Memorandum by the National Autistic Society (DM 26)



The National Autistic Society welcomes the opportunity to submit evidence to the Work and Pensions Select Committee inquiry into decision making and appeals in the benefits system. The NAS believes that the Department for Work and Pensions needs to:

Review how it communicates benefit decisions.

Improve the quality of the medical reports that benefit decisions are based on.


About us

1. The National Autistic Society (NAS) is the UK's leading charity for people affected by autism. We were founded in 1962, by a group of parents who were passionate about ensuring a better future for their children. Today we have over 18,000 members, 80 branches and provide a wide range of advice, information, support and specialist services to 100,000 people each year, including a welfare rights helpline and Prospects, the NAS' specialist employment service for people with autism. A local charity with a national presence, we campaign and lobby for lasting positive change for people affected by autism.


About autism[1]

2. Autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them. It is a spectrum condition, which means that, while all people with autism share certain difficulties, their condition will affect them in different ways. It affects around 1 in every 100 people. Some people with autism are able to live relatively independent lives but others may need a lifetime of specialist support.


3. Asperger syndrome is a form of autism. People with Asperger syndrome are often of average or above average intelligence. They have fewer problems with speech but may still have difficulties with understanding and processing language.


Our response

4. Our response presents the experiences of two adults with autism, Bob and Paula, who each recently applied for Employment and Support Allowance.[2] Based on their stories we make recommendations for how the decision making process needs to change.


The decision making process



Bob is 19 years old. He was diagnosed with autism and behavioural problems at the age of 2. Bob lives at home with his family in Mold, North Wales and attends a local day service for people with autism. He is not expected to enter into formal, paid work in the future without constant support.


Bob applied for Employment and Support Allowance earlier this year, with his Mum, Janet, helping with the application process. After completing his application for ESA, Bob received two letters from Jobcentre Plus on the same day. The first letter said that Bob was not entitled to ESA. The second letter said that Bob had been awarded the benefit and the total amount of money that he would receive.


Confused, Janet called Jobcentre Plus to ask which letter was correct. She was outraged when she was told that Bob had been awarded the benefit but the payments had been suspended because his doctor's letter had no end date. As a solution, Jobcentre Plus suggested going back to the doctor every 6 months to get a new letter for Bob.


In total it took Bob five months before the decision was made and he was placed in the support group.


5. The receipt of conflicting communications from Jobcentre Plus leads to confusion and delays in the receipt of benefits. Jobcentre Plus needs to review how it communicates benefit decisions, ensuring that they are clear, accurate and easy to understand. As part of this it should ensure that all Employment and Support Allowance written communications are accompanied by an easy read version or other accessible formats.


The appeals system



Paula is 21 and lives with her parents and 3 siblings in Lancashire. She is a talented writer and spends her time reading non-fiction. Prior to being diagnosed with Asperger syndrome, Paula worked in two different jobs but had to leave both because she couldn't cope with being "around people and loud music and busy [environments]." She couldn't understand why she found it so difficult to stay in a job.


Keen to get the support she needs to find work, Paula recently applied for Employment and Support Allowance. Three days after getting a formal diagnosis of Asperger syndrome Paula went for her medical assessment. The doctor carrying out the assessment rushed through the appointment in just 15 minutes, asking nothing about Paula's Asperger syndrome and ignoring a 7 page psychiatrist's report about her diagnosis. The doctor then recorded that he saw "no evidence of communication difficulties" in his report to the ESA decision maker. Six days later, Paula's application for ESA was rejected. She later found out that she had been scored zero points on her medical assessment.


Paula decided to appeal the decision and went to a first tier tribunal.


"I found it a lot more 'aspie-friendly' because you are able to submit written information in advance and can get help from people to do this"


Paula also had help from her Citizens Advice Bureau and this time her psychiatrist's report was taken into account.

The tribunal itself was very relaxed and it was clear that the people there had read all of the written evidence. The questions asked were direct and Paula felt as if they were genuinely trying to understand her difficulties.


Paula was told before she left that her appeal had been successful and she now receives Employment and Support Allowance.


6. Whilst the decision maker is ultimately responsible for awarding the benefit, the reality is that this decision is influenced heavily by the medical report from the atos doctor or nurse who carries out the Work Capability Assessment. It is therefore important that DWP require Atos doctors to demonstrate an understanding of autism before they are approved to complete ESA assessments.


September 2009






























[1] The term autism is used throughout this document to refer to all people on the autism spectrum including Kanner autism, Asperger Syndrome and high functioning autism.

[2] Bob and Paula talked to the NAS about their experiences as part of our "Don't Write Me Off" campaign which launches in October 2009.