Transition into adulthood – problems for autistics

20 Jun

The recent success of the Autism Bill is in part due to a decade of patient work by the All Party Parliamentary Group on Autism APPGA

is a formal cross-party backbench group of MPs and Peers who share an interest in autism and Asperger syndrome. It was set up in February 2000. Its role is to campaign in Parliament for greater awareness of autism and Asperger syndrome, and to lobby the Government for improved services for people with autism and Asperger syndrome, and their carers.

APPGA has just released an important report on Transition into Adulthood about that awkward period when young people with autism are coming to the end of their education and their parents are trying to obtain a package of suitable services to sustain them into adult life. The APPGA report lends support to the recent finding by the National Audit Office that services for autistic adults are in a parlous state. It should come as no surprise that the inadequacies of adult provision often result in an unsatisfactory transition.

At present all school children with a Statement of special educational need in England and Wales (there are parallel but differing arrangements in Scotland and Northern Ireland) are entitled to an annual review. At 14 years of age this becomes the Transition Review and it is the duty of the local authority to make arrangements for a smooth transition to adult services when the child leaves school. This works well enough for many pupils with severe learning difficulties who often stay at school until they are 19. Their transition to adult services comes at around the same time as they leave home and move to supported living in group homes or other residential settings and maybe employment or further education.

But most children leave school at 16 and adult services do not kick in until they are 18. Many children are left in limbo. Young people with autism, especially those without a Statement frequently lose out. If you have not got a Statement you do not get a transitional review. Even with a Statement things can still go wrong, especially for those in mainstream education. According to APPGA

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.

Other significant findings were that

  • Wrong expectations could derail the transition process. Low expectations became a self-fulfilling prophecy for some while unrealistic expectations placed on young people who lacked obvious cognitive impairments set them up to fail.
  • Inter-agency working could be a nightmare, especxially when no one agency took responsibility for leading the process.
  • Professionals lacked the necessary training in autism to inform their contribution to transition planning.
  • Parents and young people did not have adequate information about the available options.
  • Transition was often funding led. i.e it was a bureaucratic measure to allocate the budget and not a tool to identify the needs of young people.
  • APPGA’s recommendations will have no statutory power unless they are included in the statutory guidance that the government is planning to issue later this year. It is important that they make it into the guidance, especially as they independently reiterate many of the recommendations of the National Audit Office. So once more I urge readers in the UK to visit the NAS website and learn how you can contribute to the government consultation on adult services.

    Campaigning by the NAS and its allies is beginning to pay off after years of patient work offering detailed and practical ways forward for government and local councils to meet the challenge of autism. At last they are listening and seem to have the will to do something positive. Make sure you have your say and help to make it count.

    2 Responses to “Transition into adulthood – problems for autistics”

    1. rajensen088 June 21, 2009 at 17:42 #

      Neither of those studies used DSM-IV or ICD-10 diagnostic tools. The intruments used were the Autism Spectrum Quotient or DISCO. These tools are used to measure social impairments, not the presence of a Pervasive Developmental Disorder. The diagnostic criteria (DSM-IV-TR) for Gender Identity Disorders includes “The disturbance causes clinically significant distress or impairment in social, occupational, or other important areas of functioning”.

      This continue a trend by cognitive psychologists (Baron-Cohen)and child psychiatrists (Constantino) to redefine the definition of autism, away from a profoundly handicapping disorder to a ‘trait’ disorder associated with ‘qualitative impairment in social reciprocity’.

      Anorexia has recently been posited as being associated with ASD.

      Some cognitive psychologists have recommended placing anorexia as a sub-category of ASD

      Constantino has posited the theory that ADHD and ASD have common genetic architures and autistic traits and children with cutoff scores high enough to qualify should be another sub-category of ASD, perhaps ADHD ASD:

      This study did not use DSM-IV or ICD-10 diagnostic criteria but used what Constantino calls his SRS or Social Responsiveness Scale, a checklist of personality behaviors related to his concept of social impairments which he defines as autistic traits.

      Perhaps the cognitive psychologists and child psyhiatrists would add several sub-categories to what will be called ‘Autism Spectrum Disorders’, GID ASD and Anorexia ASD along with Constantino’s recommendation for a ADHD ASD sub-category with the ‘Autism Spectrum Disorders.

      Here is the current recommendations:

      It will be interesting to see what the Autism Working Group finally comes up with with the new definition of autism. Whatever it will be, one thing is certain, the current prevalence rates will pale by comparison to what prevalence rates will be when DSM-V is published.

    2. rajensen088 June 21, 2009 at 17:46 #

      OOPS, comment posted to the wrong discussion. Should have been posted to the gender identity article.

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