9 Oct 2008

Irish Autism Action Campaign

I've just had a request from someone I have recently (cyber) met and come to like and respect, to promote a fund raising campaign for Irish Autism Action (IAA) and backed by mobile phone company, O2.

I hate to be so negative, but I have many differences of opinion to the IAA and this campaign. When I last looked at the IAA website, there wasn't much content and it focused strongly on ABA, though I had another look today and have more appreciation for the work they are involved in.

As for the O2 campaign; I really dislike the poster. I have long been irritated by the "puzzle" image of autism. I don't think autism is all that more puzzling than other varieties of the human condition, disabilities and not, nor do I think autistic people have to be "put together" (as can be implied by a puzzle piece). I particularly dislike the picture of the young boy with his mouth missing. I don't like the message, "let us be the voice for children who don't have one." I'd be far more keen on something about enabling children's voices to be heard, or something based on the Scope "no voice no choice" campaign.

As far as I can find with my Google skills (not as good as Jenny's no doubt) this is the main charity representing autism issues in Ireland. To analyse this group and their particular ideology, I read their "message to the Irish government" which had 8 requests:
  1. Commit to Autism Specific Provision in health, education and family affairs
  2. Fund Ireland's first Autism diagnostic centre, known as Solas
  3. Provide each child with the educational intervention appropriate to their needs
  4. Fund ABA schools
  5. Make Autism-specific provision in secondary schools a priority
  6. Fund ten hours of home-based support per child per week
  7. Fund Ireland's first supported living project for adults with autism
  8. Provide automatic welfare entitlements based on diagnosis
I commend their efforts for all of these aims except points 4 and 6.

Looking further into the IAA site, their "What is Autism" page starts with a Donna Williams quote,
"Autism is not me. Autism is just an information processing problem that controls who I am"

After giving a standard definition of autism, they write of:
"the increasing scientific research which has investigated chronic bowel problems in some children with autism and many believe that this continuing research will eventually provide some of the answers to this previously unexplained condition and the current rise in incidence."
and later:
"Although it is widely maintained that the increase in incidence can, in part, be attributed to better diagnostic procedures, it is apparent that the condition itself is reaching epidemic proportions worldwide."
There is no evidence of an increase in incidence, nor of an epidemic. It is possible to focus on the increased needs of children with autism, without twisting the truth to make a case.

Among the many ways the IAA is helping autistic children, is their recently opened diagnostic centre. I saw also that they make lots of helpful information available for the parents of children awaiting or post diagnosis, about the provision of services in every county as well as advice on how to ensure your child gets the help they need and are entitled to.

Heading the "diagnosis and assessment page" is a more admirable quote from another autistic woman, Jasmine Lee O'Neill;
"It does not have to be about tragedy or pain or loss. Bearing an autistic child is not losing that child. It's gaining a very special new son or daughter"

Like the NAS, they provide links to the dubious biomedical therapies groups, but include the disclaimer that "the presence of a link in this list does not indicate that IAA supports or recommends the content of that website". There is also mention of their work in Supported Living Services, something I'm particularly pleased to see.

However the IAA I think are best know for their lobbying for increased provision of ABA as the educational setting of choice for autistic children. Earlier this year, they produced a really unpleasant radio advertisement which was banned by the regulator. The parents of autistic children behind the IAA set up 13 ABA schools now funded by the government as part of a pilot scheme.
These centres of education, which have on average been in existence for 5 years or more, deliver intensive one-to-one (where necessary) scientific intervention to the children. The majority of the tutors in these centres of education have Primary Degrees in Psychology with many also holding Masters Degrees and Doctorates in Psychology. These centres of education deliver both a longer school day and a longer school year to ensure retention of the skills acquired by the children and to prevent regression during the long school holidays.

Places at these schools are highly sought and have been credited in media reports of near miraculous changes in the children attending them. I contend, that any school with intensive one-to-one teaching, and with many more hours taught each year, and an individualised education delivered to suit the learning style and sensory preferences of the child, will have good results, whether ABA is used or not.

Early this year, autism was much discussed in the Irish media, particularly the ABA lobbyist's attempts to have their preferred method of therapy fully supported by the government. I wrote here, here, here and here about the hugely overinflated claims for the effectiveness of ABA and railed against the denigration of autistic people, especially children, in these articles and discussions, some of which included interviews with IAA's celebrity spokesperson, Keith Duffy.

Just as I said then, I support anyone campaigning for better educational provision, better training of special education teachers, more resources for classrooms and smaller class sizes, more speech and occupational therapists, more leisure and sports facilities, measures that would help everyone. I support campaigns to reduce the wait time for diagnosis and the provision of support. I'd like to see more action on the needs of adult autistic people. I feel that the emphasis on ABA and the tactic of occasionally misrepresenting autism, will delay these aims.


Anonymous said...

(You know I agree with your whole post, Sharon.)

I want to throw my emphasis, er, my professional emphasis on the misguided efforts to be TECHNIQUE SPECIFIC. I recently attended an informational session on ABA here. I cannot share here all the problems I saw in this presentation.

In both the practice of therapy and providing education, it is incumbent on the professional to use judgement in the moment, to be able to respond to the child, and to have a broad range of techniques to achieve realistic goals.

Behavior modification (aka ABA) is used by every parent, therapist and teacher. ABA is promoted as some new discovery - but looks like warmed-over old science that seems to work, but is not supported with the kind of research that is truly respected among scientists. Barbara

Ed said...

Good post Sharon,

The parts you saw in that campaign that need to be addressed/revised/omitted or rethought are the one I see that way also.

I'm glad you have an opportunity to encourage positive change there.

Sharon McDaid said...

Thanks for your comments Barbara. I agree with you, I don't know why they have to harp on about ABA TM, ie Lovaas ABA as if it is the only thing worth doing. They call it a science, and I don't know why.

Thanks Ed, I was interested to know what you thought so am glad you've shared your opinion. I don't see that any autistic people are involved in any way with that charity. It seems to be all about parents and what they want for their young children. I regret that there is no more inclusive and representative organisation in the whole of Ireland. The NAS, though flawed, is still a much better group that is working hard to be more inclusive but it operates only in Northern Ireland.

I think would be great to see something like the ASAN expand to different countries.