A Cautious Celebration of the Autism Act 2009

For most people on the autistic spectrum the Autism Act of 2009 has the potential to be a godsend. It will, it promises, set out a strategy on how services can be improved in health, social care and employment. It will ensure that Local authorities draft a blueprint of how they intend to tackle isolation, discrimination and inequality for people on the spectrum. I am not yet clear how this will translate in reality, for the adequacy and appropriateness of provision will be heavily dependent on funding and on a proper understanding of the the variability and needs of those on the spectrum. Institutions like to pigeon hole and this can reduce what is offered to a few options, as has happened in education.

Assuming a flexible, creative and individual model of care is put forward, then the transition between child and adult services (which is currently patchy to nonexistent) will hopefully become a seamless passage where child and adult services liaise and work together for a period of time before complete handover.

If councils invest in specially designed, sensory controlled, subsidized sheltered flats/housing (which are guaranteed for life) most of those with Aspergers could enjoy independence and appropriate careers. Employment success could also be within reach if really creative options were introduced. One example might be a non-teaching university post where gifted people with aspergers could research their own field at their own pace. Such posts would potentially lead to some useful discoveries and would cost less than having to fund long-term benefits.

The autism act also needs to address the benefit system. It needs to be simpler. At present many families have been driven to breaking point by the stress, uncertainty and inhumanity of fighting for even basic financial support. Others give up and have to rely on the charity of their families to support them.

If the Autism Act works as it potentially could, most of the children featured in our book may well be able to go from having bleak futures to fulfilled, comfortable and happy lives where their needs and differences are recognized, accepted , accommodated and, dare I say it, celebrated too.

There are some for whom I doubt the Autism Act will benefit. I have encountered an adult with aspergers who has a doctorate in physics but was nonetheless unable to cope with appropriate full-time work. He suffered from anxiety and sensory problems and, because of his obsessions, he focused on one part of his job whilst neglecting and failing to prioritize others. He was offered a carer who was not sufficiently bright to be a companion to him. Although the carer was kind and well meaning, his training had emphasised that people with aspergers have trouble mixing, consequently all his time was spent trying to encourage social skills such as going to the pub or having a coffee out as part of his care package. He was incapable of understanding that this particular man with aspergers, did not want to engage in light-hearted talk but was only interested in discussing academic things way beyond the carer's potential to comprehend. The AS man felt incensed and offended by the continual pressure from neural typical people for him to conform. It is this group of people I am particularly concerned about as I am worried that the care available will continue along the current model but will just be expanded not adapted.

For my son and I, the prospect of his transitioning from teenage to adult is no different. During his childhood there was no appropriate help except for Disability Living Allowance and Carers Allowance. These were terminated on his sixteenth birthday leaving us in extreme poverty. With the introduction of the Autism Act I am not convinced that the help on offer will be any more suited to his needs. After years of experiencing inappropriate provision by inappropriate so-called professionals I do not expect an Act to change things for us. I suspect we'll just get more of the same - a one size fits all approach. A lucky few will benefit from the expertise of a few knowledgeable and experienced charities and the rest, at best, will be put up in inappropriate flats, bedsits etc.

I have to admit I am cynical about the capacity of the Autism Act to help the really extreme and particularly complex cases. Like most people, I do not like to be wrong, but on this issue I very much hope I am.

Click here to read an interview with Anna.