Discussion has started on setting up a National Council on Severe Autism in the UK, modelled on the one that already exists in the USA. I was asked by a journalist for my views about this, and this was my reply:
I would welcome any initiative that advances the interests of autistic people with higher needs. Autistic advocates and organisations in the UK have for a long time campaigned against the abuse and neglect suffered by autistic people with high needs, and for an adequate level of support for them. We need a massive increase in public provision of support services, appropriate care and housing. We need a programme of research which objectively investigates human brain functioning of all types, and which is accountable to the people whose lives it is researching.
However, I am concerned at the basis on which this particular ‘National Council’ is founded.
‘Severe autism’ can mean various things: perhaps that a person has an intellectual impairment or serious medical condition as well as being autistic; perhaps that their sensory sensitivities are so different from the typical that they are in almost constant distress; perhaps that their means of communication and interaction are so divergent from typical people’s that those people think they can not communicate or interact at all. It is probably more helpful to describe people in terms of their needs rather than the severity of their autism. The autistic spectrum is not a straight line from mild to severe; it is more multi-dimensional than that.
The US National Council claims that there has been a dramatic increase in the prevalence of ‘severe autism’. However, statistics which suggest this may actually reflect an increase in awareness and diagnosis, or even of an increase in the distress experienced by autistic people. The National Council appears to attribute the suffering of autistic people and their families primarily to the autism, rather than to social factors (or to the interaction between the two).
I hope that any initiative in support of autistic people with the highest needs is based on a social as well as a medical understanding of their situation, and involves them as much as possible in determining policies and strategies. I also hope that it would seek to work with autistic advocates and organisations, to benefit from their insights and solidarity, rather than setting itself up in opposition or hostility.
