AIM DLA Benefit Reform Consultation Response

Autism-in-Mind (AIM) AIM was founded in 2001 by Carole Rutherford and Sarah Johnson both parents with two autistic children. AIM is a national support and campaign group dedicated to raising awareness of autism and how it impacts on the lives of those living with the condition. AIM is in touch with parents, carers and adults with autism all over the UK via our many internet support and campaign groups and also via local support groups with a current membership of 4170 parents, carers and adults with autism.

Carole Rutherford is an advisory group member of the All Party Parliamentary Group for Autism and was a member of the External Reference Group who helped to informed the Department of Health during the process of the writing of the Adults Autism Strategy ‘Fulfilling and Rewarding Lives'.

In April 2009 AIM launched its Valuing ‘EVERY’ Autistic Person Campaign. The Campaign was launched to highlight the unmet needs of adults with autism and the urgent need for Autism Partnerships Boards which AIM believes are essential if adults with autism are ever to have their needs met.


Since the July 2010 budget AIM has been working in collaboration with the ACT NOW (Autism Campaigners Together) Campaign. Carole Rutherford is a founder member of ACT NOW and is currently managing their campaign.

The AIM response has been written in collaboration with the ACT NOW Campaign.

1. What are the problems or barriers that prevent disabled people participating in society and leading independent, full and active lives.

Despite ‘inclusion’ being a buzz word in the UK since 1997 it is a word that continues to lack any real depth of meaning for those who are living with disability. ‘Inclusion’ has nevertheless been latched onto by the public in general, who have been persuaded to believe that we live in a fully ‘inclusive’ society and that children and adults with disabilities are now very well taken care of. This in itself has become a barrier for disabled people many of whom continue to find it very difficult to participate in society.

This is especially so for those who have hidden disabilities. Autism and Aspergers Syndrome can often be a hidden disability. People find it harder to accept, and make reasonable adjustments for someone who has a disability that can not be seen. Even if adjustments are made for that person because the disability is hidden the person who is making the adjustments often expects that the disabled person will, after a period of time, be able to present themselves in what society generally considers to be a ‘normal’ way.

Attitudes continue to be one of the biggest barriers for people with autism to overcome. There is a dearth of understanding about autism which has been recognised in the Adults Autism Strategy ‘Fulfilling and Rewarding Lives’ which is why the Government is providing £250,000 to ensure that frontline professionals and staff have received ‘some’ autism specific training. If we have frontline professionals and staff who lack any depth of knowledge and understanding about autism then it is highly likely that the lack of understanding and awareness of autism is evenly spread throughout our society.

There are stereotypical attitudes towards people with disabilities which can be hard to overcome and this can result in discrimination, patronizing, ignorance and bullying of the person who is disabled. People with disabilities can be socially ostracized leaving them feeling alone, isolated and vulnerable.

People with disabilities are often stigmatised because of their disability and adults with autism find it extremely difficult to seek and maintain employment. Only 15% of adults with autism are currently in full time employment. However even though many adults with autism would like to work there are barriers which are preventing them from doing so.

Autism is a condition that is diagnosed because of a severe impairment in communication and socalisation, and yet we continue to deny our children and adults an education which would teach them to communicate and socalise effectively, something that is essential of these adults are ever going to be able to seek and maintain employment. Effective communication and social skills need to be added to the curriculum of every child with autism if we want the current situation regarding the employment of adults with autism to change.

Support in the workplace for adults with autism ranges from being poor to none existent. As autism is a lifelong condition all children and adults with autism will require lifelong support.

Being able to live as independently as possible is something which we as a society should be striving for. Being able to live as independently as possible is even more important than seeking and maintaining employment. To enable adults with autism to live as independently as possible it is essential that as children, the services, therapies, interventions and provisions that are essential to work towards independence are readily available.

Children and adults with autism often have to fight, sometimes for many years for the essential support and care that they require. The bar to access services is often raised too high and there is too much "red tape/form filling" necessary before Local Authorities and Health and Social Care Providers will even consider providing a service.

Children and adults with autism can have problems accessing transport to get to where they need to be. There needs to be more disabled parking bays as negotiating a busy car park can present someone with autism with a sensory overload.

Disabled people are always on the outside looking into society. Society needs to be more accepting of people who are “different” and be prepared to integrate disabled people into normal life and not consider them a nuisance or too much trouble to deal with.

2. Is there anything else about Disability Living Allowance (DLA) that should stay the same?
AIM believes that it would be a mistake to take away the mobility component of DLA for those people in care homes. The government are mistaken in believing that people in care homes get transported about free of charge (they do not) Like everyone else people who live in care homes and residential want be able to access the outside world, see friends, go shopping, have outings and generally be as independent as possible. This is especially important for someone with an Autistic Spectrum Condition who needs to practice their social skills in a variety of setting because people with autism find it difficult to transfer their skills from one setting to another.

AIM finds it difficult to believe how taking away the mobility component from a disabled person who clearly has mobility issues can enable that person to continue to do these things? Our concern is that when the money is removed, people in care homes will just have to stay in and look at four walls and this will lead to depression and feelings of isolation, frustration and impact on the emotional wellbeing of that person.

AIM believes that Disability Living Allowance should remain the same for anyone who has a recognised and diagnosed lifelong condition and who has been awarded DLA for life or for an indefinite period. We also believe that any new system should not prevent people with lifelong conditions from being awarded DLA for life or an indefinite period. It must be recognised and accepted that some conditions, including autism, will always greatly impact on the lives of those with the condition, making it necessary for that person to have additional support. Reassessing people with lifelong conditions will not be in our opinion a cost effective option for the Department of Works and Pensions.

Reassessing someone with a lifelong condition like autism is we believe morally wrong because it is asking someone with a lifelong disability to justify their diagnosis and how the condition impacts on their lives.

3. What are the main extra costs that disabled people face?
There are many extra, often hidden costs, of living with autism. Many children and adults can not access the therapies, interventions, services and provisions which they require to improve their quality of life. Even those who can access these provisions often only have the therapy, intervention, service or provision for a limited amount of time. There is now well documented evidence which states that people with autism will require these things for life, because children and adults with autism often lose skills that they have gained if they are not continually worked on or supported.

Some children and adults with autism require a ‘safe space’ which can be built into their home which they need to use when they are overloaded and can no longer cope because of stress and anxiety. Some children and adults benefit from having a specially adapted sensory room in their homes. Both of these adaptations are very costly.

Many parents, carers and adults with autism pay for their own support. Extra costs can range from having someone do the shopping, cleaning and cooking, all things that adults with autism can find difficult. People with autism sometimes find it impossible to go out alone so a carer is needed to help the disabled person access the outside world. In addition to this some adults with autism can not be left on their own, so a live in carer is needed, or someone to be on call at night.

Adults with autism often have co morbidities running alongside their autism. It is now recognised that sensory issues play a huge part in autism and adapting the environment to ensure that sensory impairments are kept to a minimum can be very costly.

ADHD is perhaps the most common co-morbidity know to go hand in hand with autism. Adults with ADHD can act impulsively often without any regard to their own personal safety. This means that is it essential that there is always someone on hand to ensure that the adult remains safe.

Dyspraxia is a co morbidity of autism. Adults affected can suffer from both fine and gross motor issues. This can result in furniture being broken on a regular basis. Many families have reported to AIM that they buy beds much more frequently than other families would ever expect to buy beds.

OCD is also co morbidity with autism and this can result in the adult having to undertake often costly routines and rituals.

Fine motor skill issues mean that children and adults with autism can find it not only difficult but painful to write. This means that the easiest way for someone with autism to communicate is through a PC or lap top. These are both very costly items. It is also sometimes necessary to have a specially adapted keyboard or mouse to help the child or adult to use the PC or lap top.


Sensory issues affect not only the clothes and shoes that children and adults with autism can wear but also the type of bedding that they can use. Sensory issues can also dictate the type of bed that the person with autism can sleep in, cups they can drink from and the plates that they can eat from and the food which they eat.

4. The new benefit will have two rates for each component:
Will having two rates per component make the benefit easier to understand and administer, while ensuring appropriate levels of support?

It is difficult to answer this question without knowing how the two rates for each component will be decided. If the rate is going to be decided via assessment, written and or by medical or interview, then the adult who is being assessed must be made an offer of an advocate/communicator at the first point of contact. All adults with autism have impaired communication and socialisation skills. This impairment applies to all areas of their lives including filling in forms about themselves. Who will be carrying out any assessment that is deemed to be necessary? Will this person who is carrying out the assessments be correctly and specifically trained and qualified to understand autism, which is a vast spectrum with no two people presenting in the same way.

What, if any, disadvantages or problems could having two rates per component cause?

If the assessments are not carried out by people with the required, knowledge, experience and understanding of autism AIM believes that this could result in an increase in the number of appeals and tribunals.

5. Should some health conditions or impairments mean an automatic entitlement to the benefit, or should all claims be based on the needs and circumstances of the individual applying?

AIM feels that in some circumstances automatic entitlement should apply. We believe that people with complex lifelong conditions should be awarded an automatic entitlement without a constant battle to prove their condition and needs. Some of our supporters suggested a base rate entitlement, and that any further entitlements would be based on their needs and circumstances.

6. How do we prioritise support to those people least able to live full and active lives? Which activities are most essential for everyday life?

The most support should be given to enable adults to live as independent a life as they possibly can. Adults with autism should be able to enjoy the same quality of life as anyone else would enjoy. This would include the support needed for going out into the community and do basic things like shopping, a visit to the dentist, doctors or hospital appointments, all of which can easily become a traumatic experience for someone with autism. It can be very difficult for people with autism to adapt to change and this includes the people who are caring for them so adults with autism require consistency including those who support them.

Being able to participate in every day life activities is essential. We should be actively including adults with autism into our community and supporting them to do all of the things that neurotypicals can do, otherwise because of the rate at which autism is growing we risk greatly increasing the number of adults with autism who are living in isolation in our communities.

7. How can we best ensure that the new assessment appropriately takes account of variable and fluctuating conditions?

It is essential that whoever carries out the new assessment understands the complexities of autism because the level at which an adult with autism is functioning can fluctuate not only from day to day but from hour to hour depending on their levels of stress and anxiety. Any changes to routine however minor they would appear to be to an untrained assessor can effectively make it impossible for a person with autism not to function well for the rest of the day. Changes to their environment, their carers, a bus arriving late, or not arriving at all, a clock being 5 minutes fast can all impact on the functioning ability of someone with autism.

Sensory issues also play a big part in an adults ability to function effectively and all 5 senses can either be hypo or hyper sensitive making if very difficult to pinpoint a particular stressor. An adult with autism’s functioning can be affected by a flickering light, a clanking radiator, the smell of someone’s perfume, or the colour of someone’s jumper. Whoever assesses adults with autism will have to fully understand how complex autism is.

8. Should the assessment of a disabled person’s ability take into account any aids and adaptations they use?

What aids and adaptations should be included?

Should the assessment only take into account aids and adaptations where the person already has them or should we consider those that the person might be eligible for and can easily obtain?

Only adaptations that a person might already have and not any which they might require but have been unable to obtain should be assessed. It is difficult to imagine how an assessment can be made of something that does not exist. An adult with autism would find it very hard to imagine how an aid or adaptation could improve their lives without having first experienced the aid or adaptation, as part of the autism diagnosis is an impairment in imagination.

9. How could we improve the process of applying for the benefit for individuals and make it a more positive experience? For example:

How could we make the claim form easier to fill in?

How can we improve information about the new benefit so that people are clear about what it is for and who is likely to qualify?

It must be recognised that adults with autism have a diagnosed impairment in communication and socalisation. We believe that because autism is a condition that is wrapped around communication and socalisation it is essential that all adults with autism are offered support, at the first point of contact, when it is known that an assessment is going to take place.

It is unquestionably the case that adults with autism often find it difficult to fill in the forms that usually are required to be completed prior to assessments. This is because it is not only their verbal communications that are impaired, but also all other forms of communication including written communication.

Given that it is highly likely that adults with autism will be placed at a substantial disadvantage by these assessments, it is vital that everything is done to support a person during the process. It is essential that the relevant public bodies are proactive in offering and supplying independent and meaningful support at the earliest opportunity.

All adults who have a diagnosis of autism who are contacted by the benefit assessor should be given an automatic offer, on the basis of their autism diagnosis, of access to an advocate, supporter or “communication assistant”.

This should apply irrespective of their “apparent” communication abilities. It is essential that their communication difficulties and differences, their communication “styles” and their preferred methods of communication are taken into account and appropriate adjustments made and support ensured. If assistive technology is required then this must be provided before any test takes place.

AIM believes that effective communication is a basic human right and to enable adults with autism to communicate effectively an offer of an advocate/communicator should be made at the first point of contact whoever is undertaking an assessment.

10. What supporting evidence will help provide a clear assessment of ability and who is best placed to provide this?

AIM has some real concerns reading supporting evidence and who is best placed to provide this. There are many adults with autism who have not been seen by anyone about their autism since leaving Children’s Services. Adults with an IQ of over 70 who do not have a mental health issue continue to fall between the cracks for services and provision. AIM is very concerned as to who will be able to supply supportive evidence for adults who are isolated and hidden within our communities.

Case History

James is 24 years old and has a diagnosis of Aspergers Syndrome and Keratoconus. Although James sees someone regularly about his visual impairment James has seen no one other than his GP in connection with his autism since he was discharged from Children’s Services when he was 16 years old. At the point of discharge James’s family were told that they were ‘managing’ James very well and that it was unlikely that Mental Health Services would have anything that they could offer James.

When James was 16 his DLA was reviewed. The re-assessment form asked who James had seen in the last six months who could verify his condition and how it impacted on his life. James’s Mother made an appointment to see their GP with James. The GP felt that because James had not seen anyone in the medical profession since being discharged from Children’s Services when he reached the age of 16, it would be beneficial to James to be seen by someone in connection with his autism. Despite trying not only autism related health professionals in their own Authority the GP contacted autism related professionals throughout their Region. No one was willing to see James because his IQ was over 70.

After speaking to the DLA offices James’s Mother was told that it would be acceptable for the GP to be named on the DLA form.

When the award was made the rate for care was lowered even though James had developed Keratoconus since his last review.

There was a detailed report from a leading eye specialist detailing how the Keratoconus together with the Aspergers Syndrome was greatly impacting on James’s life.

After appealing the decision to lower the care rate for James the original award for care was reinstated and an indefinite award was made. James has to date seen no one in the medical or social care field since his DLA was reassessed and the indefinite award was made.

AIM is aware that there are other adults like James who have not seen anyone in connection with their autism for many years – who will these adults be able to call on for supportive evidence?

AIM believes that where possible a range of professionals and also a history must be taken into consideration rather than treating the claim as new each time. Autism is a lifelong disability.

11. An important part of the new process is likely to be a face-to-face discussion with a healthcare professional.
What benefits or difficulties might this bring?

While the benefits of a face to face discussion would be obvious for someone with a physical disability as it would be seen, the same could not be said for someone with autism as there are often no outward signs of autism, and where there are signs of extreme stress and anxiety they could be mistaken for just that, and not as a way in which someone on the Autistic Spectrum might present most of the time. It would be essential for whoever would be assessing the adult with autism to have a good knowledge and understanding of autism and to have received suitable and accredited training.

As we have already stated we believe that all adults with autism should be offered the support of an advocate/communicator at the first point of contact regarding an assessment. We consider this not only to be essential where any face to face assessments take place but also prior to the assessment to give the adult with autism time to familiarise themselves with their advocate/communicator and to feel comfortable with them. We believe that parents of adults with autism should be able to act as advocate/communicators for their children if there is no one else who is able to do so.

Are there any circumstances in which it may be inappropriate to require a face-to-face meeting with a healthcare professional – either in an individual’s own home or another location?

We are very am concerned that exposing some adults with autism to a face-to-face interview, wherever they are held they will put that individual at risk. Autism is a complex condition and some individuals with autism also have mental health issues and may become violent when stressed and anxious, either by being in an unfamiliar environment or by meeting a stranger.

Face to face meetings would be difficult for someone with autism with their social and communication difficulties, this should be taken into account and as we have stated the person should be offered an advocate to support them.

12. How should the reviews be carried out? For example:
What evidence and/or criteria should be used to set the frequency of reviews?

Should there be different types of review depending on the needs of the individual and their impairment/condition?

Autism is a lifelong condition. It is also a complex condition that requires someone with a great deal of expertise who can understand how the condition can impact differently on individuals with the condition.

AIM believes that there must be a very different type of assessment process for adults on the Autistic Spectrum, and one which takes into consideration their often complex and specific needs. The assessment will have to wrap around the individual with autism as opposed to the adult having to fit in with the assessment procedure. The assessment must also take into account the communication and socalisation impairments that all adults with autism have irrespective of how they appear to be able to communicate.

It would therefore make sense if someone who knows the adult with autism well and who sees them on a regular basis should be contacted at the point when a review might be required, to ask if there has been any changed in the adult’s condition and how it is affecting them and impacting on their lives. The frequency of the reviews should depend on any changes that have occurred and how these changes have impacted on the adult.

13. The system for Personal Independence Payment will be easier for individuals to understand, so we expect people to be able to identify and report changes in their needs. However, we know that some people do not currently keep the Department informed. How can we encourage people to report changes in circumstances?

Adults with Autistic Spectrum Conditions infrequently represent how their disability impacts on them accurately and to ask an adult with autism to be able to identify and be responsible for notifying any changes in their condition could be for many adults with autism problematic.

AIM is concerned by the statement that ‘Personal Independence Payment will be easier for individuals to understand’ Autism is primarily a condition that affects communication and socalisation and if it for that reason that AIM is currently campaigning for advocate/communicators for every adult with an diagnosis of autism who is having a benefit review.

We find it difficult to see how someone with an autistic spectrum condition can be encouraged to report changes in their circumstances which they might not fully understand, or may even be unaware of themselves. For this reason it may be prudent to pass the responsibility of notifying changes in a person with autism’s condition to their lead health care professional, whoever that may be.

14. What types of advice and information are people applying for Personal Independence Payment likely to need and would it be helpful to provide this as part of the benefit claiming process?

People with autism will require information that they are able to understand and this may require them being able to access an advocate/communicator to familiarize them with the process and to help them to understand how they can apply for this benefit and how they will prepare a claim.

15. Could some form of requirement to access advice and support, where appropriate, help encourage the minority of claimants who might otherwise not take action? If so, what would be the key features of such a system, and what would need to be avoided?

An unconditional offer of an independent advocate/communicator at the point of diagnosis would be beneficial for adults with autism and also an unconditional offer of an independent advocate/communicator if the adult has been assessed for support from a social care or community care provider.

16. How do disabled people currently fund their aids and adaptations? Should there be an option to use Personal Independence Payment to meet a one-off cost?

Some of the aids that are required by adults with autism are not material aids. Some adults pay to access therapies and interventions that are helpful to them that are currently not available to them via the National Health Services. It has been proven that Occupational Therapy is not just beneficial for children with autism but can also be beneficial for adults with autism. Some adults pay to access social skills groups. Both of these therapies are on going. Paying for a 12 week course of any therapy or intervention will never be enough for adults with autism because they have to continually practice some of the skills that they have learnt to be able to use them effectively in social settings.

17. What are the key differences that we should take into account when assessing children?
As the vast majority of children with autism will be seen on a regular basis by at least one of the following people, health professionals, speech therapists, educational psychologists, specialist teachers, occupational therapists, physiotherapists who will have a good understanding of that child.

AIM does not support the idea of assessing children with autism at all.

If confirmation regarding the impact that the autism has on a child’s life is necessary it should be sought via the professionals who are involved in the child’s life.

Children with autism often find everyday living very stressful and suffer greatly from anxiety. Meeting strange people who they do not know well in unfamiliar places would be very problematic for many children with autism. Some children with autism find it extremely difficult to respond to some professionals for example speech and language therapists, who they see on a regular basis at school, but who in a home setting they can find it difficult to communicate with and respond to.

For this reason AIM believes that assessments for children with autism could be very damaging and could impact negatively on the emotional wellbeing of the child. We also believe that some parents may decide not to subject their children to this ordeal and may then be unable to provide the therapies and interventions that they use the DLA to fund.

18. How important or useful has DLA been at getting disabled people access to other services or entitlements? Are there things we can do to improve these passporting arrangements?

As with everything else connected to autism being able to access additional services or entitlements because of DLA is something of a postcode lottery. In some areas the high rate care component will allow an adult with autism to access additional service or entitlements while in other areas the adults will still fail to meet the criteria for these additions. However as there are still a dearth of services for adults with autism in the United Kingdom for many DLA has made no difference at all to their services or entitlements.

19. What would be the implications for disabled people and service providers if it was not possible for Personal Independence Payment to be used as a passport to other benefits and services?

It would be good news for adults with autism if Personal Independence Payments were able to be used as a passport for other services and benefits for the reasons that we have stated in answer to question 18.

20. What different assessments for disability benefits or services could be combined and what information about the disabled person could be shared to minimise bureaucracy and duplication?

There is no reason why all of the assessments that an adult with autism may require (this could include community care and social care assessments) could not be carried out all at the same time under the supervision of a specialist body who is, importantly not part of the DWP. These assessments could be carried out by a local Community Care Team, a similar idea has been suggested in relation to children with SEN and how these are assessed. The outcome of the adult assessment would lead to a Disability Development Plan which would very importantly state the following

1. The person's disability and whether this was a statutory disability
2. How the disability impacts on them as an adult in relation to key areas such as well being, independence*, employability etc
3. What support they are entitled to both in terms of benefits and whilst at work in the form of reasonable adjustments and ongoing support.
4. Explore areas of employment that the adult with autism may be capable of doing, as well as what kind of reasonable adjustments and support would have to be put into place for that adult.
5. All of the medical needs of the adult would be listed. This is important as adults with autism often have co morbidities and other disabilities in addition to their autism which impact on their autism and ability to function.
The Disability Development Plan could be reviewed for everyone after every 3 years.
There should be a mechanism to record significant changes with regards to disabilities and how they affect the relevant person. This may seem like a costly process but firstly it would be voluntary (i.e. if disabled person did not want to apply) however if the disabled person wanted benefits or Community Care facilities we suggest it would have to be compulsory. It would be very beneficial to employers as it would give them more meaningful information about the disabled person.
Clearly the plan would have to be person centered and a great advantage over the existing system. We have no reason to believe that this way of assessing would not save money in the long run whilst ensuring that the disabled person was given the relevant support when they needed
* National Autistic Society Campaign ‘I Exist’ 2008 61% of adults with autism rely on their families for financial support with over 40% of adults with autism still living at home.

21. What impact could our proposals have on the different equality groups (our initial assessment of which is on page 28) and what else should be considered in developing the policy?

It is essential that anyone who is involved in the process of assessing the needs of either a child or adult with autism must have received the relevant and appropriate training and must have a good understanding and awareness of Autistic Spectrum Conditions. If those involved in this process do not have the relevant understanding and awareness of the condition and have not received any appropriate training then it is possible that the person will not be fairly and appropriately assessed.

22. Is there anything else you would like to tell us about the proposals in this public consultation?

AIM can not stress enough our concerns regarding adults with autism who remain ‘hidden’, unsupported and without provision within our communities. For these adults DLA is an absolute lifeline and allows them to access things that they would otherwise not be able to access without DLA like paying someone to do their shopping or helping them to attend appointments.

The Adults Autism Strategy ‘Fulfilling and Rewarding Lives’ has not has the opportunity to make a difference to the lives of adults with autism and AIM remains uncertain as to the impact and how effective this strategy will be given the current economic climate. AIM is concerned that without DLA some adults will be unable to cope because they will be unable to fund the additional help that they require.

We are also concerned about the assessment process for these adults who may very well be called upon to account for their disability and how it impacts on their lives without having the back up of any medical evidence to support them.

It would be cruel and immoral to punish adults who have never met the criteria for services and provision in their own Local Authority by asking them produce evidence from the services and providers that they have never been able to access. Some
arrangement must be made for these adults to ensure that they are able to access independent autism specific medical support should they require supportive evidence.

Autism is a condition which is identified by three significant impairments, communication, socalisation, and imagination. Impairment indicates that there is either a part of your body or a function that stops you from doing something fully. In the case of autism the three impairments present impacts on the ability of the person with the condition to be able to communicate effectively. Autism can also impair the understanding of self and that is a hugely important issue that needs to be taken into consideration when any assessments are undertaken on a person with autism. Impaired communication equals impaired understanding.

In addition to the triad of impairments sensory issues affect the ability of a person with autism to function well. Any assessment procedure but take into account the sensory needs of the person with autism and the fact that all 5 senses can be affected.

Autism is a complex condition that requires a wealth of understanding and knowledge and without that understanding and knowledge it is highly likely that the extent to which a person with autism is affected by the condition will not be recognised.

Carole Rutherford
co-founder Autism-in-Mind

Implementing the Strategy Consultation Response

Autism-in-Mind’s response to the statutory guidance for local authorities and NHS organisations to support implementation of the autism strategy About Autism-in-Mind (AIM) AIM was founded in 2001 by Carole Rutherford and Sarah Johnson both parents with two autistic children. AIM is a national support and campaign group dedicated to raising awareness of autism and how it impacts on the lives of those living with the condition. AIM is in touch with parents, carers and adults with autism all over the UK via our many Internet support and campaign groups and also via local support groups.

While AIM welcomes the opportunity to respond to the consultation regarding the statutory guidance for local authorities and NHS organisations to support implementation of the autism strategy we are disappointed with both the statutory guidance and more importantly the wording in the strategy which we believe is both weak and vague leaving it open to misinterpretation by local authorities.

Because the wording of the strategy itself is so vague the guidance needs to be worded as strongly as possible to ensure that local authorities and health authorities know exactly what is expected of them and to enable adults with autism and their parents and carers to be able to use the guidance if they need to, to hold their local authorities and health authorities to account.

Chapter 1: The provision of services for the purpose of diagnosing autistic spectrum conditions in adults

Question 1.1: Do you think that this guidance explains the responsibilities that local authorities NHS bodies and NHS foundation Trusts have for adults with autism around diagnosis?

No The guidance does not make it clear who has responsibility for diagnosis and assessment. It is currently considered to be good practice for a multi-disciplinary team to carry out an assessment leading to a diagnosis. Each part of the team brings with it its own level of expertise.

AIM believes that it would be detrimental to the process of diagnosis to allow professionals who do not have a high level of expertise and knowledge to lead on diagnosis. The pathway to diagnosis needs to be made much clearer in this chapter. AIM does not feel that the pathway is clearly defined at the moment. GPs and other services need a clear direction of the pathway they must take when referring an adult for a diagnostic assessment. A clearly defined pathway is not only essential for professionals but also for parents, carers and adults with autism.

Question 1.2 If not, what changes would you propose?

AIM is concerned that the change over from PCTs to GP consortia will impact on the implementation of the strategy. 80% of GPs admitted in a survey carried out by the National Audit Office last year that they did not have enough knowledge or understanding of autism and often had very little understanding or awareness regarding diagnosis. A lack of knowledge and understanding will impact negatively on any referral pathway unless GPs are better trained to understand the condition.

AIM is also concerned about the role of Local Authorities in appointing a diagnostic and assessment lead. It is questionable that anyone within a Local Authority would have the necessary level of expertise to appoint a team of people whose primary function has nothing to do with local authority services and everything to do with health. It must be made clear to every Local Authority that they must appoint a lead professional who will develop diagnostic services for adults with autism.

Question 1.3 Is there anything else to add that would make a difference?

Signposts to services for adults must be clearly defines and made readily available to any adult or their parents of carers who have had a diagnosis and might be in need of provision. AIM does not feel that the guidance clearly defines the duties of local bodies and what is expected of them. All adults should be able to access services via their NHS Trusts.

Question 1.4 Do you have any other comments?

Diagnosis is not the end of the road for someone with an autistic spectrum condition. It must be the gateway to the services, provision and support that an adult may well need for the rest of their lives.Every local body must have a clear path way to support and services provision for adults once their diagnosis has been confirmed.

Parents and carers often play an important role in the lives of adults with autism and their needs must also be considered. They should also have a clearly mapped out route to any support that they themselves might require to help themselves or their adult children.Autism is quite often not a stand alone condition and it is possible that some adults who have sought a diagnosis will have co-morbidities running alongside their autism. These co-morbidities need to be recognised and included.

As we have 80% of GPs who responded to the National Audit Office Survey last year regarding autistic spectrum conditions believe they lack knowledge and understanding of autism and do not keep a register of patients diagnosed with autism. Seven out of ten GPs (71%) do not provide specific ongoing support, monitoring or condition management for patients diagnosed with autism.

Most GPs who responded to the survey said that they are not confident that their patients are receiving appropriate and adequate care. For the Implementation Strategy to suggest that GPs could diagnose and autistic spectrum condition does not make sense and is not a viable option.

Question 1.4 Do you have any other comments on diagnosis?

It is vitally important that an adult who may well have been seeking a diagnosis for some years finds the path way to diagnosis clear, precise and easy to navigate. To ensure that this happens all of the professionals involved in the pathway to diagnosis must be correctly and appropriately trained.

Chapter 2: The identification of adults with autism Training is essential for any professional who is involved in the pathway from identification to diagnosis. These professionals must be correctly and appropriately trained in autism and not just those professionals who work in the field of health or social care.

Questions 2.1-2.3: Do you think that this guidance explains the responsibilities that local authorities NHS bodies and NHS foundation Trusts have for adults with autism around identification? If not, what changes would you propose?Is there anything else to add that would make a difference?

The wording in this chapter is far too weak and needs to be amended. There need to be clearly defined expectations for NHS Trusts and Local Authorities regarding the training they must provide to their key professionals. This is especially so for GPs and social workers who must have training to enable them to signpost post adults on to the diagnosis and assessment pathway. It needs to be specified what should happen once someone has been identified as possibly having an autistic spectrum condition. Asking a local body to ‘consider’ what autism awareness training is made available, is not clearly defining the expectation that all frontline staff will have to be appropriately and correctly trained.

Question 2.4 Do you think that this section of the guidance is clearly worded and will be understood by health and social care professionals, people with autism and parents/carers?

No AIM does not think that the section of the guidance is clearly worded. We are concerned that health and social care professionals will not clearly understand what is required from them.Anyone who becomes involved in the assessments must be correctly and appropriately trained.

Question 2.5 Do you have any other comments on identification?

While the strategy states that it recognises that the biggest barrier to identification of autism is a lack of awareness amongst frontline staff, it is difficult to see how the 500,000 pound that comes attached to the strategy for awareness raising training is going to be enough to ensure that all of the key frontline professionals are correctly and appropriately trained. Training for GPs is now absolutely essential given that from 2013 GP consortia will replace Primary Care Trusts.

Chapter 3: The assessment of the needs of adults with autism for relevant services

AIM agrees that identification or a diagnosis of autism is not enough and that a diagnosis should always leads to a person-centred assessment of need for care and support. AIM is concerned that the professionals who would carry out any such assessments may not themselves be appropriately trained and this could lead to a lack of appropriate support being offered or no support at all.

There needs to be a section in this chapter that underlines the needs for anyone who is likely to be involved in a post diagnosis assessment for support to be correctly and appropriately trained. It should also be made clear that a diagnosis is not necessary for an assessment to take place.

Question 3.1 Do you think that this guidance explains the responsibilities that local authorities NHS bodies and NHS foundation Trusts have for adults with autism around assessment?

While the responsibilities are explained AIM feels that they may not be clearly outlined for others to understand what they are.

Question 3.2-3.3 If not, what changes would you propose?Is there anything else to add that would make a difference?

There is no mention of access to services following an assessment and this need to be included.It would be helpful if at the point of diagnosis the adult was offered a key worker for at least the first twelve months post diagnosis. This key worker could then help the adult to access the support assessments and services that are available.In line with the recommendations made by the National Audit Office it needs to be made clear in the guidance that anyone who is involved in the assessment of an adult with autism or will be supporting an adult post diagnosis should have been correctly and appropriate trained.

AIM would like to see it clearly written into the guidance that IQ should not be taken as an indicator that an adult with a diagnosis of autism will not require either an assessment for support or actual support.

Question 3.4 Do you think that this section of the guidance is clearly worded and will be understood by health and social care professionals, people with autism and parents/carers?

NO again the wording is far too weak and needs to be much stronger.3.5 Do you have any other comments on assessment?There is no mention of co-morbidities mentioned in this chapter and they must not be overlooked.

Chapter 4Planning in relation to the provision of relevant services to young people with autism as they become adults

An assumption is made that children with autism and their families and carers will usually have had access to support that helps them achieve and be included and that without effective transition planning, this support will disappear once people with autism reach adulthood – leaving them isolated at this critical point.

AIM would like this to be reworded as AIM is aware that many children and families who are living with autism are unable to access any support during the childhood years. This is usually because the child has Aspergers Syndrome or High Functioning Autism and does not therefore meet the criteria for provision or support services. Aim fully supports the need for effective transition planning and we would like to see this planning include all of the children with Aspergers Syndrome and High Functioning Autism who are currently excluded because of their IQ. Transition can be a difficult time for any child on the autistic spectrum regardless of their IQ.

This Chapter must address this issue because there are children who do not have a statement of special educational needs who are excluded from the transitioning process because they do not have a statement.

4.1: Do you think that this guidance explains the responsibilities that local authorities NHS bodies and NHS foundation Trusts have for adults with autism around transition? NO the chapter does not cover all of the statutory duties that are already in existence and this urgently needs to be addressed.

AIM also believe that there needs to be additional guidance wrapped around transition that will place a greater emphasis on the need for local bodies to address the challenges that a child going through a period of transition often faces.

4.2 If not, what changes would you propose?

You can not put a fixed period of time on how long a transition should take because every person with autism is different and so the transitional planning should warp around the individual and not a fixed transitional period of time.

4.3 Is there anything else to add that would make a difference?

Joined up working and thinking practices are essential throughout the whole process of transition and this needs to be clearly underlined.It is important that the needs of an adult are recorded even if there are no appropriate services that are available to offer that person.

4.4 Do you think that this section of the guidance is clearly worded and will be understood by health and social care professionals, people with autism and parents/carers?

No again the wording is far too weak.

4.5 Do you have any other comments on transition?

AIM believes that a transition plan needs to wrap around the individual and not the system. We would like this to be clearly defined in the guidance. A firm diagnosis of autism should trigger a transition plan.

Chapter 5Planning in relation to the provision of services to adults with autism

While it is essential for local areas to collect data to ensure that they commission and supply services for adults with autism AIM is concerned by some of the wording used in this chapter that we believe might be difficult for newly diagnosed adults with autism and their parents and carers to easily understand.

AIM has been campaigning for Autism Partnership Board since April 2009 and we will continue to do so. AIM firmly believes that the autism strategy requires a vehicle to drive it forward if it is to succeed in transforming the lives of those who are living with autism. Autism Partnership Boards which would create a focal point for autism and raise awareness of the needs of a complex condition that often requires personalised and specific provision, services and support.

5.1 Do you think that this guidance explains the responsibilities that local authorities NHS bodies and NHS foundation Trusts have for adults with autism around planning?

No again far too weak. The wording needs to be much stronger.

5.2 If not, what changes would you propose?

AIM does not believe that there is a gap in provision that mental health and learning disability services need to provide. We believe that there is a gap that requires autism specific services. This means that autism specific services should be commissioned so that the correct provision wraps around the individual with autism and that there are no gaps in provision.

The National Audit Office pointed out in their report last year that whilst autism specific services might initially prove to be costly the likelihood was that they would over time decrease the amount of money that would need to be spent on autism.

AIM believes that unless autism specific services are developed we will continue to fail individuals with autism.Every Local Authority must have a lead officer whose sole responsibility is autism.Individuals with autism and parents and carers must also be actively and fully involved not only in the commissioning of services but also in any decision making process that will impact on their lives.

5.3 Is there anything else to add that would make a difference?

Trained advocates should be available to all adults with autism. This is essential now that adults with autism are going to have their entitlement to Incapacity Benefit which is in the process of becoming Employment Support Allowance assessed and from 2013 will have to be reassessed for Disability Living Allowance. Where no trained advocates are available parents should be allowed to advocate for their adult children without them being considered to be overly involved in the lives of their adult children.

5.4 Do you think that this section of the guidance is clearly worded and will be understood by health and social care professionals, people with autism and parents/carers?

No the language used need to be much stronger with expectations on statutory bodies clearly underlined.

5.5 Do you have any other comments on planning?

Reasonable adjustments for people with autism need to be clearly defined and specified. The personalisation of budgets for adults with autism is not overly successful at the moment and so their needs to be a clearly defined pathway which would include access to advocates, information, and advice in place.

Chapter 6: The training of staff who provide services to adults with autism

As this Chapter seeks to join together all of the action points in other chapters of the strategy, it needs to be strengthened and made clear that the appropriate and relevant training for professionals is essential to ensure that adults with autism are able to access the support that they require.

GPs must be at the forefront for awareness raising training as should any professional who will be involved in assessments..

6.1 Do you think that this guidance explains the responsibilities that local authorities NHS bodies and NHS foundation Trusts have for adults with autism around planning?

No. Generally the language used throughout this document is far too weak The wording is not specific enough to make clear what the duty for statutory bodies is. The importance of training for frontline professionals needs to be clearly underlined throughout this document.

6.2 If not, what changes would you propose?

Training needs to be specified, quantified and autism specific. Training also needs to be mandatory for frontline professionals especially GPs. Pathways to access training should be identified and details of how to access training should be clearly outlined.

6.3 Is there anything else to add that would make a difference?

AIM believes that because autism is such a complex condition it is essential that all frontline professional need to be correctly and appropriately trained. A lack of understanding and awareness of the condition can have a lasting and negative impact on the adult with autism.

Training must include all of the co-morbidities that can exist with autism. Training must be on going and there must be some method of evaluating the quality of the training being offered and given.

6.4 Do you think that this section of the guidance is clearly worded and will be understood by health and social care professionals, people with autism and parents/carers?

No, this section is not worded clearly.

6.5 Do you have any other comments on training?

Training and the quality of that training will be the one thing that underpins the strategy, and the one thing on which the implementation of the strategy will stand of fall. Without the correct and appropriate training adults with autism will continue to struggle to obtain a diagnosis and will fail to secure the appropriate support and provision that they require to live a fulfilling and rewarding life.

Autism is a vast spectrum and is often an invisible disability which can be very difficult to understand. It is therefore essential that we do not see a ‘one size fits all’ training package rolled out. Incorrect or inappropriate training can have a damaging and lasting effect on the lives of those who are living with the condition.

Chapter 7Local arrangements for leadership in relation to the provision of services to adults with autism

Someone needs to take responsibility at a local level for adults with autism. The best and most effective way for this to happen is to ensure that every locality has a named lead officer whose sole responsibility is autism. That person would be charged with setting up and implementing Autism Partnership Boards and ensuring that all of the main players, including adults with autism and parents and carers meet on a regular basis to work on the best way forward for adults living with autism.

7.1 Do you think that this guidance explains the responsibilities that local authorities NHS bodies and NHS foundation Trusts have for adults with autism around leadership?

No The language used should be clearer and stronger.

7.2-7.3 and 7.5 If not, what changes would you propose? Is there anything else to add that would make a difference?

Do you have any other comments on leadership?

The creation of Autism Partnership Boards are in our opinion essential and would ensure that meaningful engagement takes place between all frontline professionals and also with adults with autism and parents/carers. This should be set out in the guidance. 7

.4 Do you think that this section of the guidance is clearly worded and will be understood by health and social care professionals, people with autism and parents/carers?

As with all of the other chapters this chapter need to be worded in a much stronger way. AIM believes that the best way for the implementation of the strategy to success if to ensure that what is required of local bodies and lead professionals is clearly specified within every chapter.

Implementing “Fulfilling and Rewarding Lives'http://http://www.dh.gov.uk/en/Consultations/Liveconsultations/DH_118058

I laughed until I cried and then I really did cry because the Autism Act is no longer an Act it is a farce, a pantomime, an insult to a community who have waited years and years for measures to be taken to meet the needs of their community, only to find that we were in the wrong place at the wrong time.

I do not know who I am most upset with. The Labour Government, who after 13 years in power must surely be deemed responsible for the mess that we currently find ourselves in or the Conservative and Liberal Democrat Coalition Government who are coldly and callously pulling the rug from underneath us without so much as a sideways glance.

I am becoming more and more alarmed at being constantly punished for daring to give birth to two sons who reside on the autistic spectrum. I am becoming more and more distressed that my sons, who certainly never asked to be autistic, are being ignored and are ineligible for provision yet again.

When I first read "Fulfilling and rewarding lives" The National Adults Autism Strategy (which did not in my opinion reflect the vast majority of recommendations made by the External Reference Group in their final document that was handed over to the Department of Health) I commented to the CEO of the NAS that it was once again going to be left to people who were already burnt out and totally exhausted to fight for the provision that their adult children and the adults themselves, so desperately need at a local level. I know that he did not share my pessimistic view of the strategy at that point.

I am fast turning into a glass half empty kind of person and could clearly see that the strategy was not going to deliver the promise that so many of us had hoped it would. So today when I was officially sent my copy of 'Implementing "Fulfilling and rewarding lives": Consultation for statutory guidance for local authorities and NHS organisations to support implementation of the autism strategy', I was not expecting any drum rolls nor any hidden little extras which had perhaps been slipped into the document in a bid to sugar coat the cuts which are already making their presence felt.

Having been convinced that section 7 guidance would indeed make an impact, despite my protestations of impending doom, I was at least expecting to find some hope that things might in some small way improve. It is difficult to be hopeful when a consultation that is meant to be shaping the future for autism clearly spells out in it’s executive summary- that the guidance

‘underlines the importance of using existing processes and resources to achieve outcomes. For example, the guidance stresses the importance of the provision of autism awareness training for staff, but emphasises that this can be delivered as part of existing equality and diversity training, or similar programmes. This is particularly important given the financial constraints that all public sector organisations are currently working under, and the need to demonstrate value for money. The guidance also places a clear emphasis on local areas finding the best ways to meet the needs of adults with autism in their area.'

I am already beginning to see the bigger picture. The executive summary continues - that it is

‘essential to underline that all government departments are currently undergoing a spending review that is due to complete in October 2010. This consultation does not seek to pre-empt the outcomes of that spending review. This means that any statement within this draft guidance which relies on, or implies, additional resources is subject to review.’

I realised at this point that the writing was not only on the wall. It was underlined on the wall!

The hammer blow was delivered in the final paragraph to be found in ‘About this Consultation’

‘This means that in some cases the guidance may not place as many expectations on health and social care bodies as some respondents may wish.’ It is important to underline therefore that this guidance – though having legal force as explained below – is not set in stone. It will be reviewed regularly and revised as appropriate, as the evidence base develops on how best to support the needs of adults with autism to live independently as equal and included citizens.'

I was not sure that I wanted to read anymore at this point but I felt the need to see if there was going to be any gains from Implementing Fulfilling and Rewarding Lives.

We are constantly reminded that we are most certainly in the wrong place at the wrong time, and as I had voiced some months ago we are indeed going to have to battle with our individual Local Authorities and Health and Social Care providers.

‘This draft guidance should also be seen in the wider economic and public spending context. It is important we understand the full costs and benefits of proposals which would require additional investment or redistribution of funding. These will be assessed as part of the spending review. In addition, the government has made clear its commitment to promoting the radical devolution of power and greater financial autonomy to local government – offering increased flexibility for local authorities and services to make decisions that best serve their communities.’

The consultation document does state that the guidance must be treated as if it were section 7 guidance but I am still wondering where the bite that can be felt from section 7 guidance is going to be necessary. Here are some examples of what we are being consulted about.

‘Each local authority should consider appointing a lead professional to develop diagnostic and assessment services for adults with autism in their area. This should be done in conjunction with the Local Strategic Partnership.’

‘Once the NICE clinical guideline is published, NHS bodies and NHS Foundation Trusts that commission or provide diagnostic and assessment services should review their diagnostic processes and services against NICE’s best practice guidance. The aim of this is to make the diagnostic process more accessible and consistent.’

‘It is important that diagnosis of autism should open up the opportunity for the adult diagnosed to receive an assessment of their needs. To enable this to happen, healthcare professionals who make a diagnosis of autism should inform the adult diagnosed, and/or their carers, that under the NHS and Community Care Act 1990 local authorities have a duty to carry out an assessment of needs if the adult diagnosed asks for one (and it appears to the local authority that they may be in need of community care services).’

'This does not require healthcare professionals to conduct an assessment. Instead, it focuses on raising awareness that local authorities are under a duty to conduct an assessment if the adult diagnosed contacts them and appears to the local authority to need community care services. In this way, the emphasis is placed on joining up services, so that those diagnosed with autism are able to get the support they need – if they need it.'

If they need it!!!! Part of the problem is that some autistic adults will not know that they need support and services and yet it is being left to adults themselves, who let us not forget have a recognised problem in communication, to come forward and ask for an assessment. Perhaps there is a need for awareness raising training deep within the machine.

Providing information post-diagnosis

‘Diagnosis of autism can be a life-changing moment for both the individual and their family. Therefore it is important that adults diagnosed with autism are given access to information about autism and about sources of support – even if they do not qualify for care services following an assessment of needs. These should include:
• Contact details for local autism support services and voluntary groups
• Contact details for national autism representative groups
• Signposting to the “Living with Autism” section of the NHS Choices website, www.nhs.uk/Livewell/Autism/Pages/Autismhome.aspx’

Yes let’s add to the work load of the voluntary support services, remembering the financial constraints that the cuts will bring with them will also impact on the voluntary support services.

‘We will also explore the cost and benefits of issuing guidance to local authorities, NHS bodies and NHS Foundation Trusts to appoint a lead professional to develop diagnostic services for adults with autism in their area.’

Current duties

‘There is no specific duty to identify adults with autism – and the strategy could not, and does not, impose one. However, as in all areas of health and social care, staff are encouraged to be aware of potential signs of a condition and to adapt their behaviour as appropriate.’


‘Local authorities, NHS bodies and NHS Foundation Trusts should consider what autism awareness training is made available to all staff working in health and social care and how training can be prioritised.’

‘Training managers within the local authority, NHS body or NHS Foundation Trust are responsible for ensuring the delivery of autism awareness training. We recognise that they will have strict budgets to work with. It is important to reiterate therefore that autism awareness training can be delivered as part of existing equality and diversity training or similar programmes.’


‘Do you think that this guidance explains the responsibilities that local authorities, NHS bodies and NHS Foundation Trusts have around identification of adults with autism?’

What’s to explain? The responsibilities are wrapped around the words ‘are encouraged’ should consider’ and ‘should review’.

The one positive that I can see, which will not happen unless we do make our presence felt and voices heard at a local level, is this

‘In addition, the strategy suggests that “local partners may also want to consider establishing a local autism partnership board that brings together different organisations, services and stakeholders locally and sets a clear direction for improved
Services”

What this means for health and social care

• As set out in existing best practice guidance, Directors of Adult Social Services in every local authority should ensure that there is a joint commissioner/senior manager who has in their portfolio a clear commissioning responsibility for adults with autism.
• Local authorities and NHS bodies should consider establishing local autism partnership boards, looking in particular at the example of learning disability partnership boards and the benefits they can deliver for individuals and services.

As a community we are used to fighting hard and to raising our voice to make ourselves heard for every single thing that we need. We should not be doing so again when a few months ago we were celebrating the arrival of the Autism Act. But unless we do respond to this consultation we have no hope of registering our disgust that a community of people who continues to grow daily are being Con-Dem-ned and let down for being in the wrong place at the wrong time. There will come a time when someone will have to take action and stop trying to ignore the ever growing population of people with autism.

Valuing 'EVERY' Autistic Person

Valuing ‘EVERY’ Autistic Person – join AIM and help us to ensure that the needs of ‘EVERY’ Autistic Person are met through the Autism Act and the National Autism Adults Strategy.

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AIM believes that it is essential that the strategy is powered by one vehicle and that it is not split up and passed on to other already up and running initiatives like ‘Valuing People Now’ to be included within its remit. Autistic Adults have waited a very long time for something that can at last begin to address their often specific and often complex needs.

Autism does not sit neatly into any other disability box. While AIM understands that the current economic climate is not good, we would like it to be remembered that this is the very first autism specific initiative that autistic adults have had. Our best hope of making sure that the strategy delivers it’s much needed promise is to ensure that the Strategy is not fragmented.

AIM has been ardently campaigning since March 2009 to ensure that ‘Every’ autistic adult is valued. While it might be possible to add some parts of the strategy to initiatives like ‘Valuing People Now’ AIM wonders how the rest of the strategy will be delivered for adults with Aspergers Syndrome and High Functioning Autism who are already lost within the system with many not existing at all.

AIM’s campaign ‘Valuing ‘Every’ Autistic Person’ already has over one thousand two hundred parents/carers and autistic adults who have added their names in support of what we believe is needed to drive forward the Adult Strategy.

AIM believes that the strategy requires Autism Specific Partnership Boards. Partnership Boards whose remit is solely wrapped around autistic adults, but who will also work closely with Children’s Services to ensure that the transition from child to adult’s services is as seamless as possible and that children are not lost to provision in during that transition. These partnership boards could be set up in a similar way to the Learning Disability Partnership Boards but would be totally autism specific and would also include autistic adults who have a learning disability.

AIM believes that we need to start addressing the needs of all autistic adults, because although some autistic adults do have a learning disability their autism must not be neglected. Learning disability services are not specifically designed to meet the needs of autistic adults who have a learning disability. Partnership Boards would be responsible for those elements of the Government’s proposals which relate to services for adults with autism.

An Autism Partnership Board would operate within the overall framework provided by Local Strategic Partnerships (LSPs).

(LSPs) offer a framework for local partnership working, bringing together public, private, community and voluntary sectors in order to provide effective co-ordination.

Proposals for partnership working in relation to autism will fit within the overall umbrella offered by LSPs.

Close links between Autism Partnership Boards and LSPs will ensure a common direction and help to address wider issues, such as access to other local services, including transport. Autism

Partnership Boards will be responsible for:

•Developing and implementing the Joint Investment Plan for delivering the Government’s objectives;
• Overseeing the inter-agency planning and commissioning of comprehensive, integrated and inclusive services that provide a genuine choice of service options to autistic people in their local community;
• Ensuring that autistic people are not denied their right to a local service because of a lack of competence or capacity amongst service providers;• The use of Health Act flexibilities;
• Ensuring arrangements are in place to achieve a smooth transition to adult life for young people with autism. Autism Partnership Boards should particularly ensure that:
• Adults with ASC and carers are able to make a real contribution to the Board’s work;
• The cultural diversity of the local community is reflected in its membership;
• Local independent providers and the voluntary sector are fully engaged.

It will be the responsibility of the chief executive of the local council to ensure that the Partnership Board is in place. Membership should include senior representatives from social services, health bodies (health authorities, Primary Care Trusts (PCTs)), education, housing, community development, leisure, independent providers, and the employment service.

Representatives of people with autism and carers must be enabled to take part as full members. Minority ethnic representation will be important in view of the Government’s commitment that their needs should not be overlooked. An Autism Development Fund and Implementation Support Team would need to be established.

While AIM is fully aware that not all Learning Disability Partnership Boards are working as well as they could be in some areas. However we are also aware that some now are delivering and that the good working practice that has been developed by successful Learning Disabilities Partnership Boards could be used to help set up Autism Partnership Boards.

The Autism Communities best hope of this strategy making the difference that is needed to build a better future for autistic adults will be to have autism specific providers, users, developers commissioners and policy writers under one umbrella where all of the main players and stakeholders can meet on a regular basis and can together plan the way ahead for autism services, provision, resources, training and awareness.

Autism made history by being the first ever disability to have a Bill make it’s way through every parliamentary stage and the Bill will now become an Act. The Act is the first ever disability-specific law in England.

AIM has been an official supporter of the Bill from February 2009. The Act is not the end of the road for AIM and other groups who have fought hard to make sure that the Autism Bill became and Act. Now we have to make sure that the first ever Adult Autism Strategy will include the nuts and bolts that are going to be required to affect the much needed change that the Autism Community needs to see. The Strategy will spell out how local services need to be improved to meet the needs of autistic adults.

The strategy will be published by April 2010 and the accompanying legal guidance no later than December 2010.

There has never been a better time to engage with Local Authorities and PCTs. We can all make a difference and be the change that we all would like to see.

Ten thousand people muttering to themselves will never be heard but ten thousand people speaking together with ‘One Voice’ can make a difference.

You can keep up with our progress by following AIM on Facebook

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And also via our Blogs

http://aim-one-voice.blogspot.com/

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A Better Future

Autism-in-Mind’s response to
A Better FutureA consultation on a future strategy for adults with autistic spectrum conditions
September 13, 2009
Carole RutherfordCo-Founder Autism-in-Mind

Consultation questions*
1a. The following themes have been identified as areas where action needs to be taken to improve the lives of adults with an ASC: • social inclusion • health • choice and control • professional training • employment Are there other themes that need to be included? Please tell us what they are

1b. If yes, are your suggested themes more or less important than the five key themes in improving the lives of adults with an ASC? • more important • less important of equal importance

2 If you are involved in service delivery or commissioning, can you tell us about the costs, benefits and risks of the services you are involved in and what outcomes they have achieved for adults with an ASC. Please provide details below.

3.In your experience, does ethnicity, gender, disability, age, sexual orientation and religion or belief have an impact on how adults with an ASC access and experience services and the quality of outcomes? Please highlight any measures we can take to reduce adverse impact and promote positive impact.

Social inclusion

The social inclusion chapter looks at the problems adults with an ASC can face when trying to access the support they need to live more independent lives and access the community in which they live. Stakeholders identified the following as key areas where action is needed to improve social inclusion: a) strengthening local leadership to help overcome the problem of adults with an ASC falling into the gap between learning disability and mental health
b) improving data collection and the way local authorities plan and commission services to ensure that the needs of adults with an ASC are taken into account
c) improving access to community care and ASC-specific support for adults with an ASC
d) improving access to housing, transport and public spaces for adults with an ASC.

4a. Do you agree that these are key areas where action is needed to improve social inclusion for people with an ASC? Yes/No/Unsure Yes4b. Please explain your answer.Strengthening Local Leadership

As well as strengthening local leadership, which is essential, Local Authorities (LAs) must begin to implement the Director of Adults Social Services’ guidance. Every LA needs to appoint a named person whose sole responsibility and remit is autism.

Every LA requires an Autism Partnership Board not dissimilar to the Learning Disabilities Partnership Board where health providers, commissioners, service providers, autistic adults, parents and carers will meet on a regular basis and whose focus it is to discuss how the needs of all adults with autism can be best met and to ensure that this is done.

At the moment accessing provision is somewhere between being very difficult and downright impossible for autistic adults. This is because social care is usually supplied via a team of people who all too often will not own responsibility for autistic adults. These adults do not come under the remit of any of the teams that are supplying provision.

PCTs need to clearly define under whose remit ‘all autistic adults’ will come for service provision. The service provided should be the one which best meets the needs of the individual. IQ must not be seen as a cut of point for provision. PCT’s must ensure that there are professionals working within mental health who are qualified and experienced in dealing with autistic adults.

Autistic adults are often let down by the lack of trained professionals who can understand their problems. There is not a gap between mental health provision and learning disabilities. There is a provision gap and that gap needs to be filled by autism specific services. LAs and PCTs need to identify services that can actively work to stop the social exclusion of adults with autism.

Data Collection

The Department of Health should look closely at the DasLne Data Base how it was set up and how it operates. The DasLne has proved to be an accurate and an anonymous way to collect data for children in the North East of England which could be replicated for adults. http://www.ncl.ac.uk/daslne/about_daslne.htm

It will only be possible to plan and commission service provision for autistic adults when there is accurate numbers of those needing to access services. IQ should not exclude any adult from access provision and those who are currently excluded need to be included in any data that is collected.Improving Access to Community Care

LAs and PCTs need to invest heavily in the training of all staff who work with or come into contact with autistic adults. This is especially important for anyone who carries out an assessment of need. It is impossible to carry out a meaningful needs assessment if the person undertaking that assessment has not received any autism specific training and has not got the necessary understanding of the condition.

Care and support is crucial for autistic adults and at the moment an eligibility criteria where the bar is raised far too high is ruling out vulnerable adults with AS and HFA who require care and support. Not only that but very often the care and support that is available is often not appropriate for autistic adults. Support should not only come in the shape of assessments but should also come in the shape of social skills training, mentoring, social groups and befriending. This form of support also helps to build self help and life skills.

Improving Access to Housing/Transport

To improve access to housing, transport and public services for adults with autism will first of all require an audit of the current provision and how it is currently accessed.

Housing must meet all of the needs of the autistic adults. At the moment the housing on offer is not only not meeting the needs of the adults it is often inappropriate. It is inappropriate to expect a young autistic adult to live in sheltered accommodation with elderly and infirm adults.

There must be a menu of provision and it must wrap around all of the needs of the adult including sensory needs. Planners must meet with and listen to autistic adults and their parents and carers and involve them as much as possible in the provision of a suitable place to live.

Public transport can be a nightmare for autistic adults as travelling on public transport can seriously overload sensory input. Local Authorities must ensure that local transport strategies include the needs of autistic adult’s right across the spectrum. They will need to identify and plan for sensory issues, communication; access and social needs and should do this by working with autistic adults and their parents and carers as well as professionals involved in the lives of autistic adults.

Local Authorities should look at the possibility of having special access times for autistic adults in places like cinemas, leisure centres, shopping complexes and other public places when sensory issues could be accommodated for. Some shopping centres have special Christmas opening times for people with disabilities but these special times never accommodate autistic adults or children. This is something that needs to be addressed.

5 Please provide details of your experiences of the challenges faced by adults with an ASC in the area of social inclusion (e.g. problems in accessing necessary support).

No provision/intervention/prevention/support for those with AS and HFA access! Adults do not meet the criteria to access the support that it available. Support that is available is often not what the adult requires.

6 What actions do you think should be taken to address the concerns raised in the social inclusion chapter (e.g. Development of a specific local or regional ASC team that could act as learning mentors and trainers to service providers, training of community care assessors, changing the application of eligibility criteria)

There needs to be Autism Partnership Boards in every LA. These Boards would provide a structure for building a better future for adults with an ASC. The Boards would also provide a base where everyone involved in the world of ASC would come together to share, plan develop and commission services. There should also be a local/regional ASC specialist team to aid diagnosis and to share knowledge and expertise with local providers and health care professionals.

Partnership Boards would be responsible for those elements of the Government’s proposals which relate to services for adults with autism. The Partnership Board would operate within the overall framework provided by Local Strategic Partnerships (LSPs). (LSPs) offer a framework for local partnership working, bringing together public, private, community and voluntary sectors in order to provide effective co-ordination.

Proposals for partnership working in relation to autism will fit within the overall umbrella offered by LSPs.Close links between Autism Partnership Boards and LSPs will ensure a common direction and help to address wider issues, such as access to other local services, including transport.

Autism Partnership Boards will be responsible for:
• Developing and implementing the Joint Investment Plan for delivering the Government’s objectives;
• Overseeing the inter-agency planning and commissioning of comprehensive, integrated and inclusive services that provide a genuine choice of service options to autistic people in their local community;
• Ensuring that autistic people are not denied their right to a local service because of a lack of competence or capacity amongst service providers;
• The use of Health Act flexibilities;• Ensuring arrangements are in place to achieve a smooth transition to adult life for young people with autism.Autism Partnership Boards should particularly ensure that:
• Adults with ASC and carers are able to make a real contribution to the Board’s work;
• The cultural diversity of the local community is reflected in its membership;
• Local independent providers and the voluntary sector are fully engaged.

It will be the responsibility of the chief executive of the local council to ensure that the Partnership Board is in place. Membership should include senior representatives from social services, health bodies (health authorities, Primary Care Trusts (PCTs)), education, housing, community development, leisure, independent providers, and the employment service.

Representatives of people with autism and carers must be enabled to take part as full members.Minority ethnic representation will be important in view of the Government’s commitment that their needs should not be overlooked.An Autism Development Fund and Implementation Support Team would need to be established.

7. If possible, please give examples of where these concerns have been successfully addressed at a local level.

Health

The health chapter looks at the challenges faced by adults with an ASC as they try to access diagnosis and post-diagnostic support. It also looks at accessing general and specialist healthcare services (including mental health). Stakeholders identified the following as key areas where action is needed in relation to healthcare services:
a) improving access to diagnosis and post-diagnostic support (e.g. through changes to local or regional structures)
b) improving data collection and the way health authorities plan and commission diagnostic and specialist health services for adults with an ASC
c) making healthcare settings such as GP surgeries more accessible for adults with an ASC
d) improving the understanding of ASCs among mental health professionals and developing interventions to reduce the risk of people with an ASC developing additional mental health problems.

8a. Do you agree that these are key areas where action is needed? Yes/No/Unsure Yes8b. Please explain your answer.a) improving access to diagnosis and post-diagnostic support (e.g. through changes to local or regional structures)

We need local/regional teams set up across the country not only to help with the diagnosis of an ASC but to aid and support, intervention and continuity of care for adults with an ASC. Diagnosis should always be the beginning of life-long support and care for a person with an ASC. With a diagnosis should come a sensory profile and also access to professionals who can look at the biomedical side of autism should that person require medical help for any health related issues that they have as a result of biomedical issues.

We must start to include the sensory and the biomedical needs of autistic adults’ as well as looking for the well known co-morbidities, right from the point of diagnosis because these issues can impact greatly on autistic adults and how well they function. AIM is aware that sensory overload can impact on the ability of someone with autism to communicate their needs. Sensory overload can lead to a person shutting down and being unable to focus on anything else other than the invasion of their senses.

We need clearly defined pathways for all autistic adults and service provision that does not have a cut of point which is usually IQ. Autistic adults need to assured that all of their health needs will be met and that someone within every LA and PCT has the responsibility for their health and well-being.

Local Leadership has a very important part to play in the health needs of all autistic adults being met. Each LA/PCT requires a named person whose sole remit is wrapped around the needs of autistic adults. Services for autistic adults need to be commissioned on a needs basis and well structured. At the moment there is very little if anything available for autistic adults to access in the way of prevention or intervention.

Given that autism is a lifelong condition there is a requirement for lifelong services. Many autistic adults would benefit from counseling services on a regular basis, however some adults will not be aware themselves that they are in need of provision because they do not recognise that their health/behaviour has changed. So it is important that a constant even if benign presence be in the lives of our adults. This could be via a health worker or suitably trained social care worker or someone who has regular contact with the adult who would notice if there had been a change in that adult and if intervention was required. This is why it is very important that our adults are under someone’s remit and that there are people who do see our adult children on a regular basis when they move out of Children’s Services.

Parents would also need to know the services that are available to their adult children should they require them and any concerns that parents or carers raise about their adult children should not be dismissed as ‘over-involved’ parenting and should be taken seriously. The commissioning of this type of service would go along way towards stopping autistic adults from having to reach crisis point before there is any provision available to them and even then it is often not the correct provision.

Every mental health service requires fully trained professionals who are qualified to address the mental health issues that autistic adults can present with. Unless mental health services have suitably qualified and trained people we run the risk of the symptoms that someone is presenting with and not the cause being treated.

The gap that is often talked about between mental health services and disability learning is not a gap that needs to be closed it is a gap that indicates a lack of autism specific provision and this is a health issue that urgently requires action. We must stop trying to fit autistic adults into a provision that is not right for them.

Many of the mental health issues that autistic adults suffer from could be addressed by preventative service provision and would be a better use of resources and funding in the long run than having to treat someone at crisis point. We require multi-agency commissioning partnerships that will consult and work with all of the professionals working with autistic adults along with the adults themselves and their parents and carers to ensure that the right services for autistic adults are commissioned and to make the best use of the resources that are available to them.

b) improving data collection and the way health authorities plan and commission diagnostic and specialist health services for adults with an ASC

There is a real shortage of information on the prevalence of ASC among adults both nationally and at local levels. This means that people with autism are not properly taken into account in national or local planning. This is an issue that needs to be addressed quickly but will not be easy to do as many adults with ASC do not qualify for services or provision and are hidden within the system. Some adults are not even known to their GPs. It is imperative that we find someway of finding these adults. It is also imperative that we begin now by accurately recording the numbers of children with a diagnosis of autism including those who are not eligible for services or provision.

In the North East of England we have the Daslne data base.

‘Daslne is a database of children with autism spectrum disorder living in the North East of England. The idea behind the database is to help in planning services for children in the region. The database can also be used as a basis for research into our understanding of ASD. Why become involved?‘The database has many potential benefits. It will give accurate reports about children with ASD in the North East of England. Parents can ask for these reports.The database will answer important questions about changes in the numbers of children with ASD and their needs. This will give all services and voluntary organisations accurate information to plan ahead to provide high quality suppose and services to you and other families.’

We need to see replication of the Daslne or a similar method of accurately recording the numbers of children across England who have a diagnosis of ASC. This will ensure that service provision can be planned for, for those who are making their way towards adult services.

An audit of GPs should be undertaken to see how many adults with an ASC are on their panels. This would at least be a start point for finding those who are hidden within the system. Until we have accurate numbers we will never be able to provide services that we can be sure are wrapped around all autistic adults. c) making healthcare settings such as GP surgeries more accessible for adults with an ASC Reasonable adjustments can make a great deal of difference to someone with autism. Appointment times could be altered and extended where possible to meet the needs of someone with autism. There should also be a quite waiting area for an adult to wait away from the main waiting area. One would expect that GPs and their staff would be aware of the difficulties that autistic adults experience when having to visit their surgery but sadly this is often not the case. Surgeries and waiting areas can result in sensory overload which then impacts on the communication skills of the adults meaning that when the adult is finally seen by their GP the adult is unable to communicate their reason for being there. GPs and other healthcare staff often either do not know or else ignore the fact that the adult they are seeing is autistic.

In hospitals staff rarely make adjustments or understand the stress and anxiety that an autistic adult experiences just by being in a surgery or hospital. d) improving the understanding of ASCs among mental health professionals and developing interventions to reduce the risk of people with an ASC developing additional mental health problems.

The Royal College of Psychiatrists must ensure that psychiatric training must include experience in the diagnosis, assessment and management of adults with an ASC. It is impossible to understand how someone without that training is able to effectively treat someone with an ASC. The Department of Health needs to work with all the Royal Colleges, the Postgraduate Medical Education and Training Board and other professional bodies to ensure that recognition of ASC. PCTs must also ensure that workforce development plans will address the training needs of all health professionals in relation to ASC.Ideally the local or regional specialist teams that AIM is saying are necessary will be able to, through their expertise share their knowledge and understanding of ASC with all parts of the health service.

9.Please provide details of your experiences of the challenges faced by adults with an ASC in the area of diagnosis and health.

AIM is contacted not only by adults or parents and carers who feel that they themselves or their adult child might have an ASC but also by GPs who have no idea who or where to refer their patient on to for a diagnosis. This clearly shows that there is no clearly defined pathway for referral or diagnosis for adults who suspect that they might have an ASC.

Adults often encounter problems with their GPs who will not accept that they could have an ASC and make it impossible for an adult to progress any further in their quest to find out if they do in fact have an ASC. This all adds up to a lack of knowledge, understanding and training.

The adults that AIM is in contact with or who have contacted AIM have Aspergers Syndrome or High Functioning Autism. The vast majority of these adults have no on-going health provision, no preventative service provision and no idea how to access help should they require it. The majority have had no access to any one who can help them to manage their condition since leaving children’s services. These adults tell us that they do not meet the criteria to enable them to access provision.

The diagnostic criteria for AS and HFS fulfills the full tried of impairments so why do these adults find themselves cast adrift without any care or support when we are all fully aware that autism is a lifelong condition. Adults tell us that having to access other areas of the health service is not easy for them and many health professionals have no understanding of the condition. Even if the diagnosis of autism is written into their notes, and it is not always the case that it is, the professionals appear not to realise that having an ASC could make it harder for that adult to communicate and that they might need the person who they are seeing to be more patient and understanding.

Mental Health services is a big area of concern as these teams often have very little if any knowledge of ASC and we have been told by parents that accessing a team who does not have the required level of knowledge of expertise in ASC can actually make mental health issues worse. All adults with ASC should be able to access mental health professionals who have had the necessary training and are therefore able to understand and help the individual accessing the service.

Case History.

One adult with an ASC who also has a severe visual impairment which requires on-going treatment and visits to and eye hospital stopped attending because of the lack of understanding and knowledge of his ASC. Despite the diagnosis being written into his notes there were no reasonable adjustments made to make the necessary visits to the hospital easier for the adult.

The eye specialist had no understanding of ASC and was quite unhappy that the mother of the adult attending had asked to go into the consulting room with her son. He was irritated by the mother asking questions and also answering some of the questions on behalf of her son. Even after it was explained to him that the adult was extremely stressed and anxious because of the hospital visit and that stress and anxiety affected his ability to communicate affectively it made no difference to the consultant’s attitude. The ASC was completely ignored.

Because of the on-going nature of the eye condition the adult had to attend the hospital to have regular checks with the optometry department. The adults saw a different optometrist at every appointment and it had to be explained at every appointment that he had an ASC. While some of the optometrists did do their best to accommodate the adult some either ignored what they had been told or then spoke to the adult as if he had a hearing problem. The adult eventually stopped going for treatment because he was finding it so stressful.

10.What actions do you think should be taken to address the concerns raised in the health chapter (e.g. better record keeping, the development of diagnostic services, training of key professionals)?

The development of diagnostic services is essential and such a unit should be found in every LA/PCT or the LA/PCT should have access to a peripatetic specialist team who are able to diagnose adults with ASC.

These teams would be an excellent source of knowledge and training which could be fed into LAs/PCTs via the expertise of the team.Better record keeping is also essential and AIM would strongly suggest looking at the Daslne data base to see if it can be adapted and adopted for keeping accurate numbers and records of adults with an ASC.

Key training is a big issue and all professionals working with adults with ASC all professionals require autism specific training. For those already in post that training must be made available to those professionals via their own LA/PCTs who must also be required to make sure that all training is accredited and from a reputable source. LA/PCTs must be required to identify the need for training, have written requirements to cover training and implement their training plans.

11.If possible, please give examples of where these concerns have been successfully addressed at a local level.

The following case study was given to the members of the External Reference Group Health Chapter by AIM


CASE STUDY – REASONABLE ADJUSTMENTS

A mother of two sons, both of whom have an ASD, says that her GP is the only means of support that they have.She says: “He is aware that both function better in the afternoon and so we are always given afternoon appointments. If possible we are given his last appointment so that he can spend longer with our sons if he needs to. It is also quieter then. He is quite happy to let my eldest son who is 21 read any books with information regarding treatment and also his notes on the screen to make sure that he is happy with what has been written. He is also aware that our eldest is more comfortable speaking to some of the doctors within the practice than others and this has been noted without it becoming an issue.If there are no appointments available we can speak to any receptionist and state that we have an arrangement with the practice and we have always been able to see someone within 24 hours. This goes right across the board within the practice. The asthma clinic, which usually runs on a morning, will also see our son in the afternoons. I have no doubt that we would sink were it not for the understanding and adjustments made by our GP and his practice. A little understanding really can go a very long way.”

Choice and control

The choice and control chapter looks at the barriers that prevent adults with an ASC from having choices and taking control over their lives. Stakeholders identified the following as key areas where action is needed to ensure adults with an ASC have more choice and control over their lives:
a) ensuring that personalisation (including access to person-centred plans and to personal/individual budgets) is made to work for people with an ASC. b) improving transition planning c) improving access to advocates and self advocacy support d) ensuring adults with an ASC are better involved in service development and the development of policy that affects them, including making policy and consultation documents more accessible.

12a. Do you agree that these are key areas where action is needed? Yes/No/Unsure Yes12b. Please explain your answer.a) ensuring that personalisation (including access to person-centered plans and to personal/individual budgets) is made to work for people with an ASC.

AIM is aware that currently only 27% of autistic adults have a person-centered plan. One reason why so few autistic adults have a person centered- plan could be because adults with AS and HFA find it difficult to meet the criteria which allows them to access services.

Some adults with AS and HFA have been without provision since leaving Children’s Services. Although we realise that anyone can initiate a person-centered plan AIM wonders how Autistic Adults are supposed know that that they can have a person-centered plan and what a person-centered plan actually is without having ever been given the information about these plans. To ensure that personalization really does apply to Autistic Adults LAs and PCTs must locate and identify the Autistic Adults who are without services.

If all autistic adults had an on-going person-centered plan that would go a long way towards addressing many of the issues that autistic adults struggle with, including personal budgets, housing, and social inclusion. It is difficult to imagine that an autistic adult can be successfully included into their community without ever having been asked what they themselves would see as being successfully included.

At the moment far too many autistic adults have any choice or control over their lives and far too many autistic adults are excluded not only from actively participating in their community but also from service provision.Adults with an ASC, their families, supporters and user-led organisations must play a central role in developing policy both nationally and locally and also be included in service development.

It is essential that LAs and PCTs must follow their statutory duties to ensure that they consult with and involve people with ASCs their families, carers and supporters in the writing of policies and the development of services. This involvement must be meaningful and not tokenistic. All adults with an ASC must know how they can access an advocate (who has had specific training in ASC) if they need one.

There needs to be a greater emphasis on the need to train advocates. AIM has concerns about personal budgets for people with autism. There is very little data and information available at the moment to suggest that they can and do work for people with autism. AIM would like to see the DOH look closely at the outcomes for people with autism and personal budgets.

We believe that more research is required to ensure that personal budgets can work well for adults with ASC.There also has to be an assurance that the budget that is allocated to an adult with ASC is adequate and will enable to buy in all of the services which they require to meet their needs.

At the moment that National Autistic Society has found that 63% of adults with ASC do not have enough support to meet their needs. We need to be sure that personal budgets improves this situation and does not in reality make it any worse that it is now.b)improving transition planning Every Local Authority has a duty to support young people with autism through transitions.

However there is evidence to suggest that transition is far from easy for autistic young people and that LAs are failing in their duties to support these young people through transition.

Case History

'Our daughter wants to go to University and if she does get the required grades we have no information or sources of information on how to ensure she will be supported in such a huge move, which will include leaving home and living independently. Will she have academic support will there be any funding or grants available for her? We have no idea where to start, but are already worried as experience has taught us that this will take a long time to arrange, if indeed anything is available.

This is the biggest transition - the end of schooling and support to move into the outside world is sadly totally lacking. We get the impressions that if she had failed her GCSEs she would now be sitting at home with us, with no job, no training and no social activity. No-one at all would be aware that she had slipped off the radar and out of the system, with no provision or support, as we have no intervention other than the school-based Statemented provision of learning support.'

The difficulties with transition have been recognised and documented by the Department of Children Schools and Families and have developed a transition support programme aimed at improving this often difficult and stressful time for young people. The All Party Parliamentary Group has also published a report on transition and it highlights the issues and problems that young people with an ASC face during transitions in their lives. AIM would like to see the recommendations put forward by the APPGA accepted. The report and it’s recommendations can be found here http://www.autismspeaks.org.uk/document_downloads/pdf/Transition%20Report%20June%202009.pdf

b) improving access to advocates and self advocacy support

Advocacy is a service that should be available to everyone who has an ASC. Autism is a social and communication condition which can impact greatly on the lives of those who have the condition. Stress and anxiety can also make it very difficult for a person with an ASC to communicate effectively. Being able to access a fully trained advocate would make it easier for a person with an ASC to communicate and process any information that is verbalised to them.

Trained advocates can enable a person with an ASC to best express their views and opinions. AIM sees advocacy as a preventative provision because failing to express your needs, views and opinions can lead to heightened stress and anxiety levels which over a period of time can lead to mental health issues.

LAs should take responsibility for finding and training people to act as advocates for adults with an ASC. It would also make sense for LAs to help support voluntary groups who work with adults with ASC and offer them the opportunity to train as advocates and where possible offer adults with ASC the opportunity to learn how to become self advocates.

d) ensuring adults with an ASC are better involved in service development and the development of policy that affects them, including making policy and consultation documents more accessible.

Adults with ASC should be involved in all areas of service development including writing and developing policy. If Autism Partnership Boards were set up in every LA they would provide the opportunity for autistic adults to be members of the board and to feed into policy and planning within their own LAs. The members of the Partnership Boards could then meet with a wider group of people and feed back their views and opinions to the Partnership Boards. Autistic adults have got to be included from the very beginning and not half way through a course of action that it is going to be very difficult for anyone to alter. The way in which adults feed into this process must also be meaningful for them and take into consideration that they might require help to communicate their views and opinions.

13.Please provide details of your experiences of the challenges faced by adults with an ASC as they try to make choices and take control over their lives.

Far too many adults with ASC are unable to make choices or take control over their lives because they have yet to be identified as needing support and so are living, often at home with their parents are unsupported by the system, ineligible for provision with no person-centred plan and no idea what is going to happen to them in the future. These adults need to be identified and should be the responsibility of someone.

Parents are unaware that their adult children could have a person-centred plan and if parents had this knowledge they could help to initiate such a plan and it might address some of the concerns that parents have about their adult children knowing that there was something in writing that was wrapped solely around that adult child.

14. What actions do you think should be taken to address the concerns raised in the choice and control chapter (e.g. ensuring that person-centered plans are more widely available, development of brokerage, advice and advocacy services, including people with an ASC in the development of individual/ personal budgets)?

The issues raised in this Chapter could be addressed by the implementation of Autism Partnership Boards. Named people are required within LAs and PCTs who are responsible for identifying adults with an ASC who are hidden within their LAs and not known to providers. Even if these adults do not need provision at this time they should be offered a person-centered plan and the benefit of having these plans needs to be fully explained to them. Even if something is available you have to know that it exists before you are able to access it.

Having tried to access provision and failed some autistic adults give up and stop trying. All of the services listed above need to be seen as preventative services and should be given a much higher profile and priority and developed within LAs.

15.If possible, please give examples of where these concerns have been successfully addressed at a local level. Awareness raising and training


The awareness raising and training chapter looks at the lack of awareness of ASCs among the general public and the lack of training in ASCs among a number of groups of professionals and some of the problems this can cause. Stakeholders identified the following as key areas where action is needed to improve awareness of and training in ASCs:

a) the development of both national and local awareness raising campaigns targeted at both the general public and at more specific groups of people (e.g. employers, those working in the criminal justice system) b) targeted training programmes for certain professions such as social workers, community care assessors, healthcare professionals, those working in housing and in employment support c) the inclusion of ASC in social work degrees and clinical curricula.


16a. Do you agree that these are key areas where action is needed? Yes/No/Unsure Yes16b. Please explain your answer.

a) the development of both national and local awareness raising campaigns targeted at both the general public and at more specific groups of people (e.g. employers, those working in the criminal justice system)

Someone must take responsibility for raising awareness of ASC both National and Locally. The DOH should work closely with Local Authorities and PCTs to develop a national training strategy which would encompass anyone who, because of their jobs, comes into contact with or works with Adults with ASC. The necessity for training needs to be clearly spelt out by the DOH so that LAs and PCTs are left in no doubt that they have a duty and responsibility to ensure that their staff is appropriately trained.

Training must be mandatory for all LA and PCT professionals whose job might involve them working with an autistic adult. Training of the LA and PCT workforce should be addressed as a priority and as in the first part of a national awareness raising strategy. Other bodies and groups of people should also be targeted for training including groups in the third sector some of whom could help with the awareness raising strategy.

GPs and hospital workers and anyone on the front line of service provision should be required to undertake training. It is essential that all health and social care professionals are receive the appropriate and accredited training that they require to carry out their jobs.

Training should also be mandatory for anyone who is in a position where they are carrying out FACs, Continuing Care and Community Care assessments. A lack of suitably trained professionals is creating barriers for people with ASC and because of these barriers adults with an ASC are either failing to or are unable to access the support that they require right down to obtaining a diagnosis.

b) targeted training programmes for certain professions such as social workers, community care assessors, healthcare professionals, those working in housing and in employment support

It is essential that all health and social care professionals are receive the appropriate and accredited training that they require to carry out their jobs. No one should be assessing the specific and complex needs of a person whom they have no understanding or awareness of.

Training should also be mandatory for anyone who is in a position where they are carrying out FACs, Continuing Care and Community Care assessments. As a minimum requirement there should be an ASC Aware ‘named’ person working within housing and employment who have been suitably trained so that other members of staff have a point of contact and someone who they can themselves approach if they are working with someone with an ASC whom they have little understanding of.

As a continuing part of awareness raising those working outside of health and social care should be asked to train members of their workforce to act as ASC aware ‘named’ persons. This would be a good starting point until training can be fed down to all personnel.

AIM would also like to see ASC aware ‘named’ members of staff within the benefits system again this would begin to address the need for greater awareness and understanding of ASC but should only be a starting point for training that would include the workforce as a whole. Other targeted groups should include all emergency service workers, those employed in the leisure industry (who again could begin by having ASC aware named members of staff) and also those employed in the transport industry.

Professionals working in Human Resources should also be included into a target group for awareness training. It is essential that training an understanding of ASC is not limited to healthcare/public sector services but is disseminated to the wider world of work. Autism Awareness training should be included in the syllabus of HR professionals so that large companies (who are sometimes more willing to offer employment to vulnerable adults) at the very least would have someone with knowledge and understanding of ASC. Those HR people who are trained could help to input into company policies to ensure these adults are integrated into the company culture and able to access social activities provided within the company.

c) the inclusion of ASC in social work degrees and clinical curricula.

Core training and awareness of ASC should be built into not only social work degrees (although this is an absolute must) but also into every degree course or curriculum of anyone who is training to be a health or social care professional. For those already in post there should be a requirement that the training needs of those people are identified and that training is carried out as soon as possible by suitably qualified and accredited training providers.

Training is also desperately needed within the criminal justice system and there should be a mandatory requirement for those working through this criminal justice system to receive training.

AIM would also like to see ASC aware ‘named’ members of staff within the benefits system again this would begin to address the need for greater awareness and understanding of ASC but should only be a starting point for training that would include the workforce as a whole.

17.Who are the priority groups for awareness raising and training and why?

Priority Groups should include
GP’s and all front line medical professionals
Mental Health Workers
Dentists
Social Care workers
Assessment workers
Housing Groups
Employment Advisors
Employers
Criminal Justice System
Transport workers
Benefit Agency Staff
Human Resources

The reasons why these professionals require training is explained within the other answers.

18. Is there anything else that you would like to tell the Government about the need for greater awareness of ASCs and training in the condition?

Training is without doubt the most important requirement to be detailed within the adult’s strategy. Working with adults with ASC without the appropriate training is not only unacceptable it can be quite dangerous.

AIM is aware of parents and adults who have accessed both social care and health provision and have professionals who have been assigned to them or who have assessed the needs of the adults who have actually made the lives of the people who they were meant to be helping much worse. Mental Health staff who have not received the appropriate training often make suggestions to improve the mental health of adults that are not possible to carry out or prescribe inappropriate medication. You can not tell someone with an ASC who finds all forms of social interaction not only difficult and extremely stressful to join a club or group and that they need to get out more. Going out is often part of the problem and adults with and ASC often seek medical input because they are depressed and feel as if they are failing. Being told to do something that is already difficult for you can only add to that sense of failure and increase the level of depression.

AIM is also aware of parents who have contacted social care for help only to find that because of a total lack of awareness and understanding of the condition some families have actually found their adults been removed from their care and on more than one occasion committed.

AIM has been raising the necessity for training within Social Care for some years now and has met with Ministers to express their grave concerns about the lack of suitably trained social care workers.

Case Study

Debbie Story a member of AIM was an adult with ASC who had two sons diagnosed with Aspergers Syndrome one also with a diagnosis of ME. Debbie’s sons were placed on the child protection register with care proceedings being threatened because of unfounded accusations of fabricating illness. Debbie had been educating her two sons at home because their needs were not being met within the education system. Social care became involved when Debbie and her husband asked for some none educational support with their sons. Unfounded accusations were made that Debbie was emotionally harming her sons. Debbie and her husband were put under enormous stress and found themselves having to work round the clock and find people who understood ASC (both Simon Baron Cohen and Tree House became involved) in a bid to clear their name after the accusations were made by an unqualified social worker. Luckily because Debbie and her husband were able to find people who understood ASC and who were willing to help the family to clear their name, the care proceedings were dropped and the children’s names were removed from the child protection register. However while Debbie was fighting to keep her family together she became unwell. It was suggested to Debbie by a health care professionals that she was merely seeking attention and because of her battle with Social Services Debbie became too afraid to seek help for herself. 5 Months after clearing her name and having the names of her son removed from the child protection register Debbie died of kidney cancer. Training MUST be our number one priority because until it is what happened to Debbie could happen again.Access to training and employment


The training and employment chapter looks at the challenges faced by adults with an ASC as they try to access employment and training opportunities. It also looks at accessing benefits. Stakeholders identified the following as key areas where action:
a) ensuring that adults with an ASC can access the particular supports they need to find and hold on to a job
b) improving awareness of ASCs among employers and supporting them to make reasonable adjustments in the workplace for adults with an ASC
c) making the benefits and tax credits system more accessible for adults with an ASC
d) making training and educational opportunities more accessible for adults with an ASC.

19a. Do you agree that these are the key areas where action is needed? Yes/No/Unsure Yes19b. Please explain your answer.ensuring that adults with an ASC can access the particular supports they need to find and hold on to a job

Education, Education, Education this word has been on the Government’s lips since it first took office in 1997. With education came inclusion. In 2001 the revised Code of Practice meant that the Government’s inclusion policy really began to gather pace.

In 2004 the Children’s Act put into law the recommendations of Every Child Matters. The Every Child Matters agenda is really about delivering the five outcomes for children and young people in the

Children Act. They are:
• 1. Be healthy
• 2. Stay safe
• 3. Enjoy and achieve
• 4. Make a positive contribution
• 5. Achieve economic well-being

To enable someone to enjoy and achieve, make a positive contribution and achieve economic well-being and secure employment our current school system must ‘include’ subjects that are currently not taught within the national curriculum, but are essential for children with autism if they are ever to stand a real chance of gaining employment.

Although qualifications are of course very important when an adult looks for employment so to are the effective communication and social skills that that adult will require to enable them to use their qualifications in a work place. Despite the battle cry of Education, Education, Education, the inclusion agenda and the 5 aims of Every Child Matters it would appear that how to prepare young people with and ASC to be able to take their place in a workforce was never included in any of these plans.

Sitting a child in a class room with 30 of its peers will not automatically ensure that the child with ASC will ‘pick up’ the necessary effective communication and social skills that it will require to work in its adult life.

When we look at ways of encouraging employers to employ autistic adults we must also address the fact that leaving the skills that autistic adults are going to require in a working environment until they become adults is too late. We have to go right back to basics and include subjects in the curriculum (and not just in special schools we must remember that inclusion means that the majority of children with an ASC are now educated within a mainstream setting) that are going to enable our children to have a much better chance of gaining employment. At the moment we are not doing this and that has got to be our starting point for future generations. Although this strategy is for adults with an ASC we must surely hope to correct some of our mistakes and make the path to employment easier for future generations of autistic adults than it is at the moment.

However we must also strive to improve the employment chances of autistic adults today and to achieve this there are many barriers to employment that must first of all be identified and then removed. Central Government must play a big part in the identification and removal of the barriers to employment.

AIM would like to see the Department of Employment produce an employment strategy for autistic adults in a similar way to their ‘Valuing Employment Now’ strategy for people with a learning disability. Those autistic adults who also have a learning disability must have their autism recognised and so a ‘Valuing ‘ALL’ Autistic People’ employment strategy is essential to help all autistic adults to find a place in the workforce. AIM would like to see all autistic adults come under one umbrella which would then recognise and addresses the specific needs of those adults.

The Department of Employment must also work with relevant stakeholders and examples of good practice in employment should be collected and recorded to demonstrate the types of support and an adult with ASC might require to enable them to first of all secure employment and then be successful in that employment.b) improving awareness of ASCs among employers and supporting them to make reasonable adjustments in the workplace for adults with an ASC.

It is essential that those working in employment, benefits and education are more aware and better trained in ASD, so that adults with ASD are better supported in these areas to reach their potential.AIM would like to see an ASC champion in every LA whose role would include raising awareness of the benefits of employing an autistic adult. There are many positive attributes that autistic adults can take with them into employment. Being highly motivated and focused in a very positive trait for any employee as is working hard and being able to perform repetitive tasks to a very high standard. Autistic people are known to be excellent when paying attention to detail which must surely be a skill that is much sort after in many professions. An ASC Champion would make employers aware that in some other countries like Denmark they are already seeing the advantages of employing adults with an ASC http://news.bbc.co.uk/1/hi/health/8153564.stm

At the moment employers lack awareness that autistic adults do have valuable skills that they could bring to a workforce and much could be done to improve this. Employers would of course also need to be made aware for the need of flexibility when employing an autistic adult and some of the issues that adults with and ASC can often find difficult including sensory issues. However there is nothing that some reasonable adjustments could not overcome for many autistic adults and this too would need to be positively conveyed to prospective employers. c) making the benefits and tax credits system more accessible for adults with an ASC Negotiating the benefits system is not an easy task for someone who has both communication and socalisation issues. Many autistic adults are not even aware of the benefits that they should be claiming.

AIM would like to see ‘ASC aware’ named people working within both the benefits and employment agencies. This would be a starting place for greater awareness and understanding of ASC and also part of a consistent approach to train all staff working within the benefits and employment agencies. There also needs to be a reappraisal of the forms that are used at the moment for autistic adults to claim benefits and amendments need to be made. In ‘Valuing Employment Now’ information that is required about benefits is in accessible and easy-read formats.

AIM would like to see something similar designed especially for autistic adults. This could be included in a ‘Valuing ‘ALL’ Autistic People’ Employment Strategy.

d) making training and educational opportunities more accessible for adults with an ASC

There needs to be a much greater emphasis placed on empowering and making autistic adults ready to seek and secure employment. Educational opportunities must include skills that are required both at an interview and in a workforce/place. We can not expect autistic adults to know what to do at job interviews and we are failing them by not offering them training courses wrapped around interviews and real life working situations. This type of training needs to begin within our school system. It is unacceptable to leave acquiring these skills until just before we expect the adult to seek employment and worse still not having any where for those adults to learn these skills. Adults with an ASC need to access timely and appropriate support in preparing for work and looking for work, this should include voluntary work. They should also be able to access the support they require in a work place.

AIM would like to see working mentors in place for autistic adults to help them for at least the first year of their employment lives. This is something that could be added to a ‘Valuing ‘ALL’ Autistic People’ Employment Strategy.

20 Please provide details of your experiences of the challenges faced by adults with an ASC as they try to access employment, training and benefits.

Current statistics state that only 15 per cent of adults with ASC are in employment compared to 48 per cent of the whole population of people with disabilities. This means that adults with ASC are at an even greater disadvantage than other disabled people when it comes to getting some form of employment.

Research needs to be undertaken to see why people are at a greater disadvantage when seeking and securing employment than people with other disabilities. Training opportunities have got to be designed appropriately for adults with an ASC and those adults have got to know that those training opportunities are available to them.

21.What actions do you think should be taken to address the concerns raised in the training and employment chapter (e.g. training for those who offer employment support, awareness campaigns among employers, changes to contracts so that progress towards work is rewarded)?

Establishing Autism Partnership Boards would address all of the issues raised within this Chapter.

22.If possible, please give examples of where these concerns have been successfully addressed at a local level. Further comments

23. Do you have any additional comments about what should be included in the strategy for adults with an ASC?

It is essential that a vehicle is found to power the strategy when it is ready to roll out. If there is no joined up way of driving the strategy AIM fears that it will take years to make any difference at all to the lives of those who are desperate for services, provision and resources.

AIM believes that it is essential that the strategy is powered by one vehicle and that the strategy is not split up and passed on to other already up and running initiatives like ‘Valuing People Now’ to include in its remit. Autistic Adults have waited a very long time for something that has some weight behind it that can begin to address their often specific and complex needs. Autism does not sit neatly into any other disability box. While we understand that the current economic climate is not good we would also like it to be remembered that this is the very first autism specific initiative that autistic adults have had pointed in their direction and that their best hope of making sure that the strategy delivers it’s much needed promise is for it not to be fragmented.

AIM has been ardently campaigning for the last few months to ensure that ‘Every’ autistic adult is valued. While it might be possible to add some parts of the strategy to initiatives like ‘Valuing People Now’ AIM wonders how the rest of the strategy will be delivered for adults with AS and HFA who are already lost within the system with many not existing at all. AIM’s campaign ‘Valuing ‘Every’ Autistic Person’ has over one thousand two hundred parents/carers and autistic adults who have added their names in support of what AIM believe is needed to drive forward the Adult Strategy’.

AIM believes that the strategy requires Autism Specific Partnership Boards. Partnership Boards whose remit is solely wrapped around autistic adults, but who will also work closely with Children’s Services to ensure that the transition from child to adult’s services is as seamless as possible and that children are not lost to provision in during that transition. These partnership boards could be set up in a similar way to the Learning Disability Partnership Boards but would be totally autism specific and would also include autistic adults who have a learning disability.

AIM believes that we need to start addressing the needs of all autistic adults because although some autistic adults do have a learning disability their autism must not be neglected. Learning disability services are not specifically designed to meet the needs of autistic adults who have a learning disability. Partnership Boards would be responsible for those elements of the Government’s proposals which relate to services for adults with autism.

The Partnership Board would operate within the overall framework provided by Local Strategic Partnerships (LSPs). (LSPs) offer a framework for local partnership working, bringing together public, private, community and voluntary sectors in order to provide effective co-ordination.Proposals for partnership working in relation to autism will fit within the overall umbrella offered by LSPs.Close links between Autism Partnership Boards and LSPs will ensure a common direction and help to address wider issues, such as access to other local services, including transport.Autism Partnership Boards will be responsible for:•
Developing and implementing the Joint Investment Plan for delivering the Government’s objectives;
• Overseeing the inter-agency planning and commissioning of comprehensive, integrated and inclusive services that provide a genuine choice of service options to autistic people in their local community;
• Ensuring that autistic people are not denied their right to a local service because of a lack of competence or capacity amongst service providers;
• The use of Health Act flexibilities;
• Ensuring arrangements are in place to achieve a smooth transition to adult life for young people with autism.Autism Partnership Boards should particularly ensure that:
• Adults with ASC and carers are able to make a real contribution to the Board’s work;
• The cultural diversity of the local community is reflected in its membership;
• Local independent providers and the voluntary sector are fully engaged.

It will be the responsibility of the chief executive of the local council to ensure that the Partnership Board is in place. Membership should include senior representatives from social services, health bodies (health authorities, Primary Care Trusts (PCTs)), education, housing, community development, leisure, independent providers, and the employment service.

Representatives of people with autism and carers must be enabled to take part as full members.Minority ethnic representation will be important in view of the Government’s commitment that their needs should not be overlooked.An Autism Development Fund and Implementation Support Team would need to be established.

While AIM is fully aware that not all Learning Disability Partnership Boards are working as well as they could be we are also aware that many now are delivering and that the good working practice that has been developed by successful Learning Disabilities Partnership Boards could be used to help set up Autism Partnership Boards.

The Autism Communities best hope of this strategy making the difference that is needed to build a better future for autistic adults will be to have autism specific providers, users, developers commissioners and policy writers under one umbrella where all of the main players and stakeholders can meet on a regular basis and can together plan the way ahead for autism services, provision, resources, training and awareness.