Sunday, 17 April 2011

Letter to Stuart Andrew MP from ACT NOW supporter in Pudsey, West Yorkshire.

Dear Stuart Andrew,

My brother, now an adult, has Asperger's Syndrome - he finally got his diagnosis at the age of 30 and it's been a huge relief to him, and myself and our mum, to know exactly why he is different from most other people and that we can at last start to help him understand how to fit in where he wants to, and importantly become more independent through employment.

I'm a supporter of the ACT NOW (Autism Campaigners Together) nationwide campaign. Last October they published an Impact Assessment Report to make clear the overwhelming concerns that parents, carers and adults with autism have regarding the proposed cuts and benefit assessments. 

The campaign highlights the huge amount of anxiety and stress that people with an autism spectrum disorder (ASD), and their carers have, when faced with going through assessment by the DWP or other bodies. It's like a test, a one-off chance to express yourself through a minefield of apparent bureaucracy, and I can totally understand this response.  

My brother underwent a Work Capability Assessment 2 years ago, and was refused ESA on the basis that he "seemed like a normal young lad" to the assessor. It's apparent that in its present format the WCA places people with autism and other complex disabilities at a disadvantage. It is not always apparent that someone with autism has a disability because autism can be a hidden disability and the needs of the person with the condition can fluctuate on a daily basis depending on their environment and levels of anxiety. It is often hard for sufferers to understand the nuances of what they are being asked, and they will often give the most basic answer they can think of, whether it applies to them fully or not, in order to relieve the stress and pressure of the situation. 

It is obviously very difficult for someone who has not been specifically trained in autistic spectrum conditions to effectively determine the impact that the disability has on the sufferer during a short assessment process - something that certainly was the case with my brother's assessor. It's a story I hear time and time again, that DWP assessors simply continue to misunderstand and make crude assumptions about autism and ASDs and how they affect sufferers.

It's probably worth noting that most ASD sufferers I know, including my brother, are desperate to find understanding employment and a chance of independence - they are most certainly not benefit scroungers but hard working, diligent, but misunderstood people. All they want is some help to find an employer who is willing to take a chance on someone who is a bit different and take the time to understand them - help  that my brother believes would have been more forthcoming had he been assessed by a properly trained person and been fairly assessed for, and granted, ESA. 

I am therefore writing to support ACT NOW's call for all persons suffering from an ASD to have access to an independent, trained advocate or communication assistant to help them interpret the initial assessment forms and paperwork, and to support them during the WCAs. This should be offered, in a way that the sufferer understands what is being offered and why, and what the consequences may be if they decline, at the first point of contact from the DWP when any application for benefits is made. This should also be offered where there is any review of the assessment or benefit entitlement. Advocate provision should be automatic on the basis of their autism diagnosis, and should be available to support the initial form filling process as well as any WCA or other interviews. 

It is also worth noting that many people with ASDs may not see themselves as needing help, as there is nothing physically wrong with them, and they may not have any insight into why having an advocate is essential, because they have such a narrow interpretation of things that neurotypical people would automatically assume to be obvious.

I am concerned that ASD sufferers are being disadvantaged by being left the the mercy of untrained assessors and a system that puts people with difficulties of interpretation and understanding at a severe disadvantage. Independent advocates should be provided irrespective of the sufferers' ‘apparent’ communication abilities - there is always more going on in the mind of an ASD sufferer than they are able to communicate succinctly.

I would be incredibly grateful if you could take the time to consider the issues facing adults with autism and ASDs, and, add your name to the ACT NOW National Call for independent advocate/communicators for every adult with a diagnosis of Autistic Spectrum Condition (ASC), by contacting them at They will also be happy to provide further information on the concerns of autism sufferers and their carers. 

I look forward to hearing from you at your earliest convenience.


Caroline said...

Great letter, it is lovely to see the support you offer your brother, and I completely agree that ASC can be "invisible" to the untrained eye - and indeed many people with the condition work hard to hide evidence of it.

I would have been happier if instead of putting "ASD sufferers" you had said people with ASC (autistic spectrum condition). Although many of us do "suffer" from impairments as a result of ASC the condition does not necessarily inflict suffering, and I don't think taking on a victim role as implied by "suffering" is helpful (as compared to an acknowlegement of the need for some support in specific)for the growth of people with ASC or understanding of the condition.

Anonymous said...

Wow well said, well written but should apply in all cases not just for adults with Autism claiming DLA is a total nightmare as the assessors do not understand the complex nature of Autism and the difficulties faced on a daily basis.

Jennie said...

Really i have never seen such an eye pleasing letter, i think it will even inspire many of the people to join the community and am sure many people will find this post very useful. Cheers :)

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