What happens when children with autism grow up?

Written on 15th Apr 2014 by Sylvia Lowery

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In the UK children and young people are entitled to educational help and support. If the needs of the child are not being met the parents have a right to go to tribunal and to get the provision their children need. This means that although a lot of parents feel that the provision isn’t perfect there is normally provision for children with autism.

When children with autism move into adulthood they often find there is very little provision for them. In some parts of the UK individuals with autism are assessed for services by the use of an IQ test. If the young person has an IQ that is higher than 70 this means they will not qualify for any help. The Autism Act places a duty upon the Local Authority to carry out an assessment if an individual has a diagnosis of autism. Furthermore the adult with autism cannot be denied services purely based upon their IQ score. This very forward thinking piece of legislation has only applies to England. In Wales adults with autism are still being denied services on the basis of an IQ test. To coincide with World Autism Day the UK government announced the ‘Think Autism’ strategy. This provides ring fenced support for autism in England. Devolution in Scotland, Wales and Ireland means that this doesn’t apply to the rest of the UK.

What does the IQ assessment feel like for an individual with autism ? What is the impact of being denied services ?

1. The IQ test is threatening. You feel you can’t win. A low IQ score will make you like you are a failure, but a high IQ score means you get no help.

2. You are afraid that all the progess you have been making will stop. One young man was in the middle of learning bus skills. He stopped having help to learn this skill because his IQ score was too high for continued services.

3. Independence is held back. An individual may have been able to go places with a support worker as a child but as an adult they are reliant upon family members to support them. They are often forced to live at home because there in no support available for them to move into their own place.

4. Social activities have to be stopped. Often most of the care and support fall onto one person. This person may have other responsibilities such as other children and elderly parents. This can cause adult with autism to have to give up activities bacause their carer is providing so much support  that something has to be cut.

5. The carer may struggle to hold down a job with all their caring responsibilities. This care is provided with no respite at all because an IQ assessment has deemed that the individual with autism doesn’t qualify.

6. Isolation for the individual with autism can cause increased mental health problems which is a common co-morbid with autism.

7. Using an IQ score to assess a person with autisms needs is like assessing a wheelchair users needs with a dyslexic test. Autism and learning disabilities are separate conditions. An individual may have autism and a learning disability but a lack of a learning disability does not mean a lack of a disability.  Local authorities who apply this criteria are effectively saying they don’t support adults with autism unless they have a second qualifying disability.

8. Access to work provide support if an individual with autism is in employment but often there are gaps in skills which make employment almost imposible. Targeted support for employment training is a post code lottery with large areas of the country having no support or where support is offered it has to be paid for by direct payments which is not available to those whose IQ is above 70. Tis can cause poor outcomes for inividuals with autism.

9. Many parents of adults with autism are afraid for the future because there is no provision in place if something happens to them.

10. This is an unjust system that is going to create a lot of problems in the future. It is time for change. Adults with autism should be treated better.

To come along to the Autism Employment Conference see here.

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