Letter to Norman Lamb MP & Minister for DoH

Dear Minister,

Next month you will publish a review of the English Autism Strategy. In the run up to that publication Act Now for Autism would like to make you aware of the reality of living with autism in 2014:  

On 13^th March last year you attended an All Party Group for Autism meeting where you sai:

“We would never tolerate someone with cancer getting the wrong care or treatment…and we should not tolerate someone with autism or Asperger’s Syndrome getting the wrong care or treatment or not getting any care at all.”

In February 2014 there are far too many adults with Asperger’s Syndrome who are getting the wrong care, treatment or no care at all. We simply do not have enough professionals with the required understanding and knowledge of autistic disorders to make a difference to the lives of those living with the condition.

In January NICE published the Autism Standard (QS51) and stated that the quality of care for people with autism is poor and varies across England and there is a real variation in the type and quality of care that people receive with many autistic patients living with other conditions that go undiagnosed. Nice called for clearer standards to ensure consistent treatment across the country.

Local Authorities and Health Service providers continue to do nothing for some of the most vulnerable people in their regions. In the years since the Autism Act and the roll-out of the Adults Autism Strategy, there has been a great deal of talk about services and provision for people with autism, but almost no action.

Our supporters tell us that although their Local Authority does now have an Autism Action Plan, they continue to report back to central government that their plan is ‘in progress’.

Having a plan that has been ‘in progress’ for more than three years with no actual progress is a failure and just not good enough.

There has to be some way of accurately measuring the progress that Local Authorises have made and holding them accountable.

It was very positive that the latest self assessment sought to include adults with autism who you asked to comment about the performance of their Local Authority. Many of the adults who speak to us on a regular basis, who are active within their Local Authorities, were totally unaware that their Local Authority had been asked to have their self assessment signed off by adults with autism.

Concerns are being voiced to us by adults with autism and parents and carers, who are active within their local partnership boards and working groups, that meetings with their boards and groups are now very infrequent and are often cancelled at the last moment due to a high number of apologies. Assurances are being given to stakeholders that meetings will be held to amend draft action plans, only for them then to find out that the action plan has already been signed off.

The problems that people with autism face are real, and far from their quality of life improving over the last three years, for many services have been slashed or stopped altogether. With further cuts to come and changes to benefits, where does that leave them?

Autism does not fit neatly into any one box and because of this it has become a hot potato that is being passed from one provider to another.  It is in fact adults with autism who remain unsupported and in need who are at the end of the line. They are the ones left holding the hot potato.

Adults are telling us that without an assessment being carried out they are being told by social care providers that their difficulties are mental health related. How is it possible to come to that conclusion without an assessment being carried out? Adults who have communication and socialisation impairments are being asked to go into detail about their own condition and how it is impacting on their lives, with people they have never met or over the phone. It is simply not acceptable to expect autistic people to communicate their needs this way.

We fully understand that adults with autism can and do have mental health issues, however we are concerned that assumptions are being made by professionals who often lack a depth and breadth of understanding about autistic conditions.  

Mainstream mental health services are not equipped to deal with adults who have autism. Long standing diagnoses are being questioned by people within mainstream mental health creating increased anxiety for the adults who are trying to access support. 

Adults with autism are being told that there first point of contact for their difficulties must be their GP who will then signpost them on to the correct services for them. In 2009 a national audit office report stated:

“Four out of five GPs (80%) indicate that they require additional guidance and training to identify and manage patients with ASD more effectively.

Seven out of ten GPs (71%) do not provide specific ongoing support, monitoring or condition management for patients diagnosed with autism. “

In 2012 the National Audit Office published a report ‘Progress in implementing the 2010 Adult Autism Strategy’ in that report they concluded:

“Less progress has been made in improving access to social care assessments, personal budgets and diagnostic services in local authorities, which can all help adults with autism to access services and support.”

And that:

“Effective local services and support are crucial in improving outcomes for people with autism.”

 

There were many areas in their report which were marked as ‘not achieved’.

Not achieved.

Ensure that autism awareness training is available to everyone working in health or social care and work with partners to develop effective training modules which can be used by local authorities and primary care trusts to create local training programmes.

When the autism strategy was rolled out in 2010 adults with autism were not being asked to account for themselves in face to face benefit assessments in the way in which they are now. 

A revised strategy is urgently needed to reflect the impact that benefit assessment and reassessments are having on adults with autism. 

Advocacy and not being able to access a suitably trained autism advocate to enable an adult with autism to communicate effectively during an assessment remains one of the biggest concerns for Act Now for Autism. Another burning issue relating to the benefit assessment and reassessment process - who exactly are adults with autism meant to go to for supportive information about their condition? 

There are literally thousands of adults with autism who have seen no one in relation to their autism after being signed off from children’s services. Who can these adults turn to as a matter of urgency if they require supportive evidence? 

The assessment process is contained within time restraints making it all but impossible for adults with autism to access the professionals they need to enable them to produce supportive evidence. 

As we have already explained adults with Asperger 'sSyndrome and High Functioning Autism do not meet the criteria to enable them to access support.

During the last three years it has become clear to us that adults with Asperger's Syndrome are caught up in a truly vicious circle with no way of being able to get out of it. 

We need someone or some process to monitor and evaluate the progress of the autism strategy to ensure that progress really is being made. We also need to record outcomes.

Without these things being in place we are very concerned that when the next review comes along we will find adults with autism and their parents and carers with exactly the same as they have right now: NOTHING. 

We thank you for taking the time to read our letter.

Sincerely

Act Now For Autism  

Three Years On - Feeling The Impact.

We started our campaign three years ago this weekend and to mark the occasion we are releasing our new video ahead of our updated impact assessment (Feeling The Impact) in September.

We want to thank all of you, our 12,000+ supporters, across the UK for your continued support and for allowing us to use your images and words to aid in our campaigns for advocacy and better services for autistic people. 

"You've got the words to change a nation...if the truth has been forbidden, then we're breaking all the rules...

Let's get the TV and the radio to play our tune again, it's bout time we got some airplay of our version of events..."

NOTHING?

Is this really what our adults with autism have got to look forward to for the rest of their lives?

Have you ever read the book or watched the film The NeverEnding Story?

Bastian Bux a quiet boy who loves to read is accosted by bullies on his way to school. He hides in a bookstore, interrupting the grumpy bookseller. Bastian "borrows" a book, leaving a note promising to return it, and races towards school. He then hides in the school's attic to begin reading The Neverending Story.

The book describes the fantasy world of Fantasia which is being threatened by a force called "The Nothing," a void of darkness that consumes everything.

April 30th marks the end of Autism Awareness Month. A month that has seen some amazing autism awareness and acceptance blogs and events held all over the world.

Adults with autism and parents and cares have worked hard to improve the level of awareness, understanding and perception, that those who are not living with autism have about the multi faceted and multi coloured condition that we call autism.

So as we leave Autism Awareness Month behind us for another year, I decided to write a blog that I am afraid will paint a pretty grim picture of what living with autism, after the age of 16, can be like for young people and adults with the condition here in the UK.

I make no apologies for the title of my blog ‘The Nothing’ because for many post 16 children and adults with autism that is exactly what they have to look forward to. NOTHING!

In fact despite all of the fighting that parents do on behalf of their children, to ensure that they get a half decent education and that at least some of their complex needs are met, the sad truth is that with every year that passes far too many children are marching on towards ‘The Nothing’

Our Lives in your hands Ambitious About Autism. March 2013

“Less than 1 in 4 young people with autism continue their education beyond school.”
                                                                                                   
Transition Report APPGA - Effective and timely planning – 2009

“Many young people with autism often find that planning for their futures does not happen. Frequently, decisions about a young person’s next placement are made only when they are approaching the end of their schooling or, worse still, after they have left school. In the vast majority of cases where transition planning is taking place, it is happening without the involvement of adult social services. Contributors stressed how vital it is to address this. A recurrent theme was the mental health problems which developed, in part, as a result of these failures.”

Realistic yet stretching expectations – APPGA Transition Report 2009

For more able young people with autism, there is often insufficient understanding about the level of support they will require in adult life. Yet, for others, expectations may be too low meaning poor outcomes become a self-fulfilling prophecy. Transition planning must explore all areas where support may be needed to ensure young people with autism can reach their full potential in adulthood, including employment, independent living skills, relationship counselling, and leisure activities.

I Exist -  National Autistic Society 2008

Our research found that:

63% of adults with autism do not have the support to meet their needs

60% of parents say that a lack of support has led to higher support needs in the long run

33% of adults with autism have experienced severe mental health problems because of a lack of support

15% of adults with autism have a full-time, paid job.

Don’t Write me off – The National Autistic Society

A third of adults with autism are currently without a job or benefits, and many more struggle to access the right support to find a job or get the benefits they're entitled to.

National Audit Office Report 2009

There are few specialised employment support services for people with autism. A lack of understanding of autism is a significant barrier to gaining employment and more training is needed for those delivering employment support and those administering benefits.

National Audit Office Report 2009

Around 200,000 adults with autism do not have a learning disability. This group often fails to secure appropriate support, as health and social care services are traditionally configured for people with a learning disability, a physical illness or disability, or a mental health problem (which autism is not). Three quarters of local authorities said adults with autism who do not meet eligibility criteria experience or report difficulties accessing the services they require. Almost two thirds felt that current services for adults with autism are limited. Providing specialised support could improve outcomes for this group of people and their carers, and potentially enhance value for money, as the costs of establishing such support could be outweighed over time by overall savings.

Very little has changed since these reports were written, this is despite the fact that in England we have an Autism Act and a National Adults Autism Strategy "Fulfilling and Rewarding lives" There is nothing very rewarding about doing NOTHING.

Twelve years ago there was no transition planning for my eldest son and no support to ensure that he was both ready and able to seek and maintain employment. Twelve years down the road and there is no transition planning and no support to ensure that my youngest son is both ready and able to seek employment.

My eldest son has seen NO ONE related to his autism since leaving Children’s Services. He is 26 years old in July.

I spoke at an All Party Parliamentary Group (APPGA) meeting in March, where a room full of desperate parents of adults with autism ALL had the same story to tell. Our adult children have already been consumed by ‘The Nothing’ and we are all looking for a way out of ‘The Nothing’ into a much brighter place for them to live.

Norman Lamb, Care Minister was at the APPGA meeting where he said

 “we would never tolerate someone with cancer getting the wrong care or treatment…and we should not tolerate someone with autism or Asperger syndrome getting the wrong care or treatment or not getting any care at all”.

He added that great progress had been made in getting the legal framework in place with the adult autism strategy and statutory guidelines but recognised that in many places on the ground, nothing really has changed.
The Minister added that the upcoming review of the strategy in April is a critical period for the Government to engage with parents and carers to provide a thorough analysis of where we are and what needs to change.

Speaking more generally about mental health, the Minister stated his own record in making mental health a top priority for the government’s mandate to the NHS commissioning board seeking parity with physical health by 2015.

Mr Lamb stressed that he was determined to make a difference in this area while he was Minister.

I, along with thousands of parents of adult children with autism, and adults themselves, really do hope that someone, sometime soon, will make a different, to end ‘The Nothing’ that is all that our adults have to look forward to.

I know how hard fighting our day to day battle for our children can be. I know what it feels like to run on empty. I know how frightening it can be when you have a child with autism, to look further down the road than next week or next month. But NEVER did I know how truly desolate and desperate I was going to feel living with one adult child with autism, and one adolescent where the only thing that I could be sure of for either of them was NOTHING

So PLEASE if you see anything posted about making life better for adults with autism, if you see anything posted about the autism strategy review where we are asking for comments or support, please support us. Even if you just add your name to whatever it is we are fighting or campaigning for then please do it. Your child with autism will be an adults with autism before you can blink.


Do not sit back and do nothing. Do not let 'The Nothing' be your child's NeverEnding Story!

Carole Rutherford
Co-Founder Act Now For Autism 
 

Letter to Esther McVey MP, Minister for Disabled People

Dear Ms McVey,

We are writing to you on behalf of our 12,000 supporters to share their concerns regarding adults with autism and the change from DLA to PIP.

We know that the vast majority of  PIP assessments will be made no earlier than October 2015, which is why we are raising these serious concerns now, in the hope that you may look again at the assessment process. We want you to ensure adults with autism are not discriminated against because they do not possess the historical and medical data that will determine if they will need to have a face to face assessment and subsequently if they will qualify for PIP. 

We would welcome the opportunity to meet with you to discuss this fully.

Autism is not a medical condition nor an illness so many adults are not seen routinely by any medical professionals.  Adults with an IQ of over 70 often do not meet the criteria to be seen by the few professionals who are autism experts. There are often no services for adults with autism to access, this is despite many of our adults desperately needing to access services and provision.  The historical and medical data that will decide whether or not they will have a face to face PIP assessment simply does not exist for many thousands of adults with autism.

The Adults Autism Strategy ‘Fulfilling and Rewarding Lives’ has to date, done very little to improve access to services and provision for adults with Asperger Syndrome and High Functioning Autism.
Carole Rutherford, national coordinator for Act Now For Autism, raised concerns about the continued lack of services, advocacy and provision for adults with Asperger Syndrome and High Functioning Autism when she had the opportunity to speak to Norman Lamb at an All Party Parliamentary Group for Autism meeting last month.

Autism is a communication disability, so adults with autism who have no background evidence of how their condition impacts on them are going to be at a distinct disadvantage from the start of the process. Anyone who has been and is being seen regularly by doctors, consultants and social care professionals are able to supply evidence which will substantiate the impact that their condition has on their lives.

Many adults with autism already have to endure the Work Capability Assessment process without any support. Act Now For Autism has been campaigning for advocates for adults with autism from the first point of contact regarding ESA. We believe autism trained advocates should be offered at the first point of contact re applying for PIP.

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.

There are many adults in our community who no longer have parents to support them. Who will these adults be able to access for support, advocacy and for additional evidence about their condition on their behalf? By their own admission 80% of GP's do not know enough about autism to help their patients or to signpost them to services that could help them.

There is no exact data as to how many adults with autism there are in the UK. Many adults with autism are hidden within our communities, and many of them only survive because of their DLA, which enables them to pay for the additional costs they face because of their condition.

Autism is a complex condition and the community of autistic adults across the UK are going to need a lot of support to navigate through all of the changes brought by the Welfare Act 2012. 

We look forward to having the opportunity to discuss this further in person with you.

Regards

Act Now For Autism 


Act Now for Autism is a core group of people passionate about the future and wellbeing of children and adults with an Autistic Spectrum Condition in the UK. The Core Group members of Act Now for Autism and all of the Regional Coordinators live with autism.

On the 18th October 2010, 6 of our Founder Members handed over a petition at 10 Downing Street with over 6,000 signatures in support of the Act Now for Autism campaign.
                
This was preceded by the official launch of an Act Now for Autism Impact Assessment Report. The report contained the concerns and views of 2924 people who either live with autism or are autistic themselves. We had a greater response for input into our report than Brian Lamb did into his 18-month long Inquiry into the whole of special educational needs.
  
As well as the core group we have a group of coordinators who cover 13 regional areas in the UK including Scotland, Wales, and Northern Ireland. 

We have active supporters on all of these groups who are keeping us informed about changes to provision and services in their area. We are also receiving information through our groups about the benefit assessments that adults with autism are having. We hear from adults with autism who are undergoing benefit assessments, and are suffering from extreme anxiety as a result of their assessment, on a daily basis. 

We currently have more than 12,000 supporters and the number of supporters continues to grow on a daily basis.

My Life With Autism - Employment

As part of our ongoing My Life With Autism series, one of our co-ordinators, who wasn't diagnosed with an ASD until he was 30, wrote this piece about some of his experiences in education, of adult life and employment. He wishes to remain anonymous: 

My years at school were not pleasant. I had always had difficulty interacting with my peers at school. I was well behaved on the whole but just didn’t seem to be the kind if guy people hung out with. Then just prior to starting secondary school the bullying started and it carried on and on and on and on.
I spent my most of my time in secondary school trying not to socialise in the hope that I would not attract too much attention and get living daylight kicked out of me. I did develop one or two safe friendships or at least to me they were but they turned out to be somewhat problematic. People change their minds very quickly they feared being made an outcast.

Why am I saying all this?

Well this view of relationships formed the basis for how I interacted at work later on and the problems I then had to overcome. What happens at this point in a child’s life affects how they will respond to situations that arise in the workplace. Anxiety is the autistic persons worst enemy, it will try and dominate their lives to the point of paralysis. More importantly the fear it produces will prevent them from achieving their potential in life and that is really is the point, isn’t it?

Between finishing school and starting college I took a summer job (my first full-time job). It was somewhat nerve racking as I had little or no idea what to expect. I discovered very quickly that relationships in the workplace were often quite complicated. Just because someone was being nice and polite, didn’t necessarily mean they liked you and more importantly I very little idea how to read people/situations and respond appropriately.

I struggled in college too, I was studying engineering and my maths wasn’t great. I had an interest in electronics, computers and I pursued it with vigour but all I really wanted to do was explore and experiment. As I’ve come to understand structured learning is a discipline and at that stage in my life I really hadn’t got it. When you can develop the discipline of structured learning it ceases to be an obstacle to your vision, your project, it becomes a tool to help you make things better. It can be a source of inspiration for ideas and the process of learning can become a pleasure rather than a pain. I look back on those years now, realise that it was one of the first pivotal point in terms of the journey I was on. The course tutor developed something of a dislike for me (he taught maths) and with my maths marks being low I was encourage to drop out after the first year. On reflection had I been persistent and perhaps re-sat the first year I might have had a much smoother ride but as it was I just rolled with it. And left feeling somewhat of a failure.

Many autistic people I have met over the years have told me similar stories. Autistic people usually think a little differently to most people, they focus only on what has value to them in terms of knowledge. It’s the project that’s important not simply knowledge for the sake of it. Many graduates come out of University with no idea what the really want to do. They have gone through the motions and met the requirements but where is the vision, the reason. Autistic people have vision they just don’t know how to get there, or they don’t believe they can. They are afraid to try.

I subsequently had a couple of different jobs. The second of these was as a Lab Tech. in a school which was really just code for a gimp (a sort of slave with no particular job description). As it turned out this particular school had an early RM network and very few members of staff who had any idea how it worked. I helped looking after it. I very quickly found myself being given all manner of technical equipment to figure out by staff who were not sure or didn’t have time. There was just one problem. I’d not been sanctioned to do it. This resulted due to my weak communication and conflict resolution skills, in me being bullied by an over zealous head teacher. I used the term bullied because it’s one thing to be told your in the wrong in some way and given chance to explain yourself. It’s another to be deliberately intimidated and unable to explain your actions. I don’t think I really understood what was going on at the time. I left with yet another failure under my belt. I had however managed to persuade my employer to give me day release to go back to college and try and converted my previous successful study to a different qualification. So I didn’t come away entirely empty handed.

Understanding the expectations of an employer is key to functioning well in a work place. Whether you choose to accept this or not, there is assumed knowledge and behaviour. Employers therefore don’t alway feel that need to explain how things should work, the chain of command, define responsibilities. To an autistic person this is a must. They need to know what is expected of them, the appropriate response when faced with uncertainty about what to do.
If there was one reason more than any other that autistic people find it difficult to hold down jobs it would be “lack of assumed knowledge”. If both the employer and employee have good clear method of communication (that works for both of them) and clearly defined and fully understood expectations from the outset there is no reason why an autistic person can not be valuable resource to their employer.

I shall resist giving a full CV here but I spent the subsequent 6 years working as an IT Technician moving between jobs building knowledge and learning, I had received no formal training thus far but by the time I left my final IT Technician role at Birmingham LEA’s Education IT in November of 1997 they had just recruited a team of IT Technicians for their Technician Service. When I arrived in December 1994 there was no LEA Technician Service. I was the first Technician and although I hadn’t realised the significance of it at the time. It was this innovative nature that would define my career.

This was the second key pivotal point in my career. By this time had begun studying with the Open University and I knew that I wanted to do something more than simply tech. support. I moved way from Birmingham to Northumberland, looking for some direction. Applied for Jobs but got no where. I was however spending most of my time exploring many internet related technologies which would form the basis of what I was to do later on.

It was at this point I made a decision. I wanted to be computer programmer. I had been programming as a hobby since I was 10 years old, I was 25 at this point. A chance online encounter with another OU student would give me that first step. He offered my the chance to code on a small project for a company he was contracting with in Birmingham. It was in a language I’d never worked with before but I didn’t care. Within a couple of months I was  back in Birmingham working with them full-time. I really did enjoy it but it was to be short lived, they had financial problems and had not been paying my tax forward. I now knew what I needed to do, it was time to move on.

I managed to get a place on clearing in the August and by September I was at University on a 2 year full-time HND. In the 13 years since then I have worked as a Web Developer for a variety of different businesses been involved in some great projects and some great moments of innovation (firsts).

I say all this because many autistic people believe that the obstacles to their successes cannot be overcome. That they can not develop sufficient social skills to cope in the workplace even though that may have the intelligence and in some cases nothing short of a gift in their particular area. I did have a lot of difficultly and I have made it sound a lot easier than it actually was to cope with at the time but I firmly believe that many of these difficulties could have been eased simply by having the right support.

I wasn’t diagnosed with an ASD until after my first post-graduate job (I was 30).
I’ve hinted at many of the reasons of autistic people being unemployed or seen as unemployable already but many of the arguments are I have heard even from autism specialist organisations all seem to miss one key point which is this:

It’s about the person not the job or the education system. You can have the best education system in the world but if the person doesn’t believe in themselves and the system doesn’t come along side support them with encouragement then it brings them no hope. If an employer doesn’t believe in the capability of a person they are employing and the employee doesn’t believe in themselves either how can it ever be a truly productive relationship.
Success is relative. 

As Einstein said, “Everyone is a genius. But if you judge a fish on it's ability to climb a tree, it will live it's life believing that it is stupid.” 

It’s more important to help an autistic person find the right path for them and encourage them in it than to push them down a path they can never reach their potential on. It’s a waste of their time and doesn’t benefit society or the economy in anyway.

There are many things the Government can do to support an Autistic young person through education and work placement but in the end the greatest reform needs to happen in business. Business sees employing people with difficulties more as a risk management exercise than an opportunity and improve their company. You don’t get gains in business without risks. There are many examples of autistic people who brought about massive leaps in innovation and discovery, yet if no one had listened we would never have known.

Call For Trained Advocates

Act Now For Autism supports the call for a Cumulative Impact Assessment of the Welfare Reform Act. The changes to benefits are falling disproportionately upon disabled communities across the UK and our particular concern is for those with hidden disabilities, like autism. We want to highlight our call for an autism-trained advocate to be offered to every adult with autism at their first point of contact with the Department of Work and Pensions:

When the changeover from DLA to PIP is rolled out in April adults with autism are looking at the prospect of having two face to face assessments. People with autism and Asperger's syndrome have difficulties with social communication and flexibility of thought. This includes how to understand and work out what another person is thinking or feeling by reading and interpreting body language, gesture and facial expression.

People with autism who are non-verbal and have a learning disability will have great difficulties in making their needs and wants understood but tend to be accepted as needing advocacy which is often automatically available to them through statutory support.

It is often assumed that as people with Asperger’s and High Functioning Autism (HFA), who have average intellect and the ability to talk, are therefore able to fully and comprehensively communicate and state their view due to their verbal ability. It is this area in which people with Asperger's/HFA are in great need of advocacy because although they can physically talk they are not always able to explain and express what they actually think or thought, intend or intended to do or emotionally feel or felt using the medium of speech.

Autism is a complex disability and anyone who acts as an advocate requires a good overall understanding of autism. There are very few advocacy services that are freely available to adults with Asperger's/HFA and even fewer advocacy services that have specifically trained advocates to support people with autism.
 Most adults with Asperger’s/HFA are not eligible for statutory services and cannot access advocacy groups for a range of different reasons. An advocate with a background in autism can explain the condition of Asperger’s/HFA when attending a benefit assessment with the individual. They can also write reports and support letters as even if the person has intellectual capacity s/he may lack the insight into her/his condition that the advocate can provide.

We are extremely concerned by comments being made by Esther McVay that most adults transitioning from DLA to PIP will have historical evidence which can be used to decide if they would require a face to face assessment. There are thousands of adults with autism who have seen no one about their condition since being signed off from Children’s Services. This is because autism is not deemed to be a medical condition and these adults have never been eligible for services despite their lifelong need. Many adults with autism will simply have no evidence to provide, historical or otherwise. This means that once again adults with autism will be placed at a substantial disadvantage because their disability does not fit neatly into a box.

PIP will require an adult to complete a questionnaire similar in style to the ESA 50 Questionnaire which is long and difficult for someone with autism to both interpret and answer. Autistic adults do not always fully understand their own condition and this can mean that they are not accurately answering some of the questions in the ESA 50 about their functionality correctly or appropriately.
Functionality is what matters, not what the specific condition the person has.

Case study:
Client B was found “fit for work” at an Employment and Support Allowance Work Capability Assessment; her benefits were stopped; amongst other statements she told the health care professional that she did “all her own cooking and meals”, so was assumed to be independent and work ready. B suffered needless anxiety and stress while waiting 6 months for the appeal and self-isolated during this period; she appealed the decision at tribunal with the help of an advocate’s report and presence where it was explained that her “independent cooking” was purely making toast and marmite for breakfast and microchips for her tea, as she ate little else. Due to her phobias no one else could touch her food. The advocate was essential for client B. ATOS Healthcare, DWP decision makers and the tribunal time and costs could have been saved plus the anxiety and stress endured by Client B if an advocate had been available at her Work Capability Assessment.

Many people with autism cannot work and most (over 85%) of those even with Asperger’s/HFA have never been successful in obtaining or remaining in employment; their benefits have therefore been a source of stability and a replacement for the lack of statutory support or autism specific intervention that they should have been able to receive.

People with Asperger’s/HFA are now having their ESA re-assessed on a regular basis and it can be removed, without much notice, by professionals with little experience of Asperger’s /HFA. People with Asperger’s/HFA look normal as it is a hidden disability, and their intelligence and ability to speak can often be considered to be “fitness to work”. The fitness for employment of a person with Asperger’s syndrome is assessed by first answering questions on the ESA50 form which expect some insight into their condition, which they many often lack due and secondly measured in the WCA by questions about “a typical day”. Their capacity to live independently and use a washing machine are scored rather than the challenges they face due to their inability to understand and process instructions, cope with colleagues, deal with change and inconsistency in a work environment, and manage their anxiety and stress levels.

We believe and are campaigning for advocacy to be offered to every autistic adult at the first point of contact by the DWP, regardless of their perceived work capability. 95% of adults with autism we asked said they would prefer to be supported through the benefit process by an autism-trained advocate.

Adults with Asperger’s syndrome/ HFA are now in constant state of crisis and alarm, they are desperate and anxious as even if they succeed in gaining ESA, they will soon be asked to complete the ESA50 again and then attend another assessment to see if their autism and fitness to work has improved. They also fear that, if the health professional or decision maker does not understand their disability, their benefits will be taken from them if the assessment is not successful.

It seems there is no end to this increasing cycle of assessments and reassessments in their current format for people with Asperger’s/HFA and the implementation of PIP will put ever more stress and pressure upon autistic adults and their parents and/or carers.

It is essential to put in place robust advocacy services so some of the most vulnerable in society, can continue to rely on the benefits to which they should be entitled. Adults with Asperger’s/HFA need as much and the same sort of advocacy as those who have autism and a learning disability, and this service is cost effective and essential for their mental and physical health and wellbeing. Advocacy is low level preventative support at its best and would save money by reducing appeals and tribunal costs.

Act Now For Autism
www.actnowforautism.co.uk

Written by Carole Rutherford (Act Now For Autism and AIM) and Sara Heath (Shropshire Autonomy)