All Party Parliamentary Group on Autism 

Services for Adults with Asperger syndrome 


Asperger syndrome  is an autism spectrum disorder, a condition that affects the way a person communicates and relates to others. It affects more males than females.

Access to Social Care 

Across the UK adults with Asperger syndrome continue to be explicitly excluded from accessing statutory health and social care because they do not “fit” the perceived remit of learning disability or mental health services. 65% of adults with Asperger syndrome have not received a community care assessment.[1] (Barnard, J. et al, 2001)

“They didn’t think I was bad enough as my IQ was over 70.”  [2]

Despite the Government’s guidance on the White Paper Valuing People , which states that people with Asperger syndrome are not precluded from using learning disability services, current practice is for people with Asperger syndrome to be sent between mental health and learning disability services, neither of which accepts responsibility for assessment or provides services.[3] (Powell, A. 2002)

An example of good practice is the Independent Living Skills and Social Group in Leicestershire. It is a club for over 18s with a diagnosis of Asperger syndrome. The group organises activities such as computer skills, budgeting, cooking, first aid and social events. People have used the group to develop living skills, enabling some members to move from residential care to a more independent lifestyle. The benefits to the funding local authorities and health authority are reduced mental health difficulties and reduced support costs as people are learning skills to help themselves in independent living.[4]


Benefits 

People with Asperger syndrome often struggle to get adequate support via the Benefits system. Most are often judged “too able” to get disability benefits such as Disability Living Allowance (DLA).

Misconceptions & Misdiagnosis 

“I suffered severe depression resulting in self-injury, thoughts of suicide, hopelessness, failure and self hatred. ...I was diagnosed as a result of the depression. The first diagnosis was schizophrenia then severe clinical depression with suicidal tendencies.” [5] 

The lack of understanding of the nature of Asperger syndrome can result in an individual being misdiagnosed, particularly by mental health services. This can lead to isolation and acquired mental health problems.





BriefingonServicesforAdultswithAspergerSyndrome00
For people with autism spectrum disorders, the key to mental well-being lies in prompt and accurate diagnosis. According to the NAS 2001 report, Ignored or Ineligible,  46% of people with Asperger syndrome were not diagnosed until after the age of 16. Without a diagnosis, it is impossible to put in place interventions that can assist the positive development of people with autism spectrum disorders. They are unlikely to receive appropriate services and may experience feelings of frustration, depression and anger as they struggle to comprehend their impairments. In order to prevent this downward spiral local authorities need to provide this group with practical life skills that will empower them to lead happy and productive lives.

Employment 

Low employment rates and single status are common in people with autism spectrum disorders. An NAS survey in 2001 found a 6% rate of full-time employment in adults with autism spectrum disorders.[6] Whilst employment is not an option for all, many more people could and would be able to work if they received better support (Barnard et al, 2001).[7]

Prospects, the National Autistic Society’s employment consultancy for adults with Asperger Syndrome, hopes to develop its work to support people in their search for employment. Please see accompanying briefing on Prospects.

Saving Costs 
A report on the cost of autism was published in March 2001, by Krister Jarbrink and Martin Knapp. The estimated annual expenditure on services for people with autism spectrum disorders in the UK is approximately £1 billion and an average lifetime cost per person with autism of £2,940,538[8]. If increased social education support, such as social groups, post-diagnostic support, self-advocacy and life skills were given to teenagers and adults with Asperger syndrome, more would be able to live with greater independence and at a reduced public cost.

Action Needed 

  1. Training for professionals across services including social, health, housing and education to increase awareness of Asperger Syndrome; 
  2. Preventative measures to reduce social isolation; 
  3. A clear support pathway so families know whom they can contact to request assessment under the NHS and Community Care Act 1990; 
  4. A range of supported housing options. 









[1] Barnard, J. et al, Ignored or ineligible?  NAS 2001
[2] Barnard, J. et al, Ignored or ineligible?  NAS 2001
[3] Powell, A, Taking Responsibility  NAS 2002
[4] Powell, A, Taking Responsibility  NAS 2002
[5] Barnard, J. et al, Ignored or ineligible?  NAS 2001
[6] Barnard, J. et al, Ignored or ineligible?  NAS 2001
[7] Barnard, J. et al, Ignored or ineligible?  NAS 2001
[8] Jarbrink, K and Knapp, M The Economic Impact of Autism in Britain  Autism Vol 5 No1 pp7-21 March 2001, Sage and NAS in Loynes, F The Impact of Autism  All Party Parliamentary Group on Autism 2001



Page last updated on: 24/07/2002