Category Archives: Society

What should our funding priorities be for autism?

The following poll has been posted on the UK Autism Linked In Group

At a time of limited public funding, what in your opinion is the most important area to tackle (I realise that it is important to do all these things, and I’m not advocating to drop any of them.

 

  • To research the causes of Autism.
  • To improve the diagnosis of Autism.
  • To offer support to people with ASD.
  • To offer support to parents.
  • To improve facilities in schools.

Despite the poll attracting very little attention I mention it because two of the comments express views that are widely held but rarely subject to scrutiny.

The first is that

Early intervention makes such a long term difference if provided in a timely and structured way.

It does not really matter which interventions we are talking about, although advocates for early intensive behavioural interventions consistently make this claim. They may be right but where is the evidence? Most studies concentrate on benefits to children compared to control groups that do not receive early intervention or else they compare benefits from differing versions of early intervention. There is very little research into adult outcomes and how they correlate to early intervention.

When Professor Patricia Howlin delivered the 2012 Centre for Research in Autism and Education (CRAE) Annual Lecture she cited figures from Shattuck et al (2012) that out of 11000 items of autism research published between 2000 and 2010 only twenty three pertained to adult interventions and services. The National Autistic Society campaign I Exist was precisely about the difficulties that adults encounter in accessing services they need in order to enjoy a full life. Our current campaign around implementation of the Autism Act is meant to ensure that local authorities meet their obligations under the Act to provide services for adults and do not use the current economic crisis as an excuse to do nothing or even cut back on existing services.

The second comment that

parents […] are most likely to be the key carer in any child’s life

is true for children. But children become adults and usually outlive their parents. Furthermore, those adults who are judged to lack capability to care for themselves are the responsibility of social services departments. Parents may still be heavily involved but they have no rights regarding the decisions taken on behalf of their adult offspring.

It is fair to debate whether parents or government agencies are best placed to identify the needs of adults, whatever the reason for their mental incapacity. But we will all be orphans one day. And so will our children. Sooner or later they are going to have to manage without us. Surely it is better to encourage that in our lifetime while we are still there to ease the transition.

Children have the right to an independent life. We have the right to enjoy the empty nest once our children have grown up. If that is not happening because of deficiencies in the system, those deficiencies will still be there when we are dead and gone.

So I voted to prioritize resources for adults. Not only do we owe it to the generations who have been under diagnosed and ill served up until now, such interventions have been shown to be cost effective. The National Audit office Report, Supporting People With Autism Through Adulthood found that identifying autistic adults and targeting services to meet their needs would actually result in a net saving by reducing the inefficient use of existing resources.

I am not advocating a pity party in which differing parts of the autism community vie for sympathy and support in order to maximize their share of the cake. We need a bigger cake and we need to challenge the assumptions of those who run the bakery. I question the predominant idea in autism that if we can fix the children it will be alright. The practical obstacles to finding a “fix” are enormous. And the ethical dimension has scarcely been considered, something I will begin to address in my next post. Meanwhile there is a lot we can do to fix society’s attitudes to autism and the social policy agenda that is causing needless harm and distress to vulnerable adults. Our children are tomorrow’s adults. So let us Act Now and Act Together for all their futures.