21 May 2009

Middleton Autism Centre, what's the point?

In the brave new world of Irish politics, we were promised great things to come from North-South initiatives. For some bizarre reason, it was decided that the needs of autistic children in Ireland would be best met by placing a dedicated autism centre in a tiny village about half way between Belfast and Dublin. Here was an opportunity for those with a vested interest in such things to proclaim the benefits of a centre that would, we were told, be an excellent resource for everyone, north and south. It has come to nothing. According to a BBC report, £6 million has been spent on the centre since it was approved 7 years ago, yet not a single child has been through its doors. Instead it, "currently carries out research and training for professionals who work within the autism field" though the founders has hoped to have children and their carers stay over in a residential block "for assessment and therapy.... Building work was due to begin in the autumn with the facility to open in 2010."

Now that the Irish economy is utterly banjaxed, the minister in charge has declared that they will be withdrawing funding from the centre and his Northern Irish counterpart is annoyed and has said, "This project has to go ahead, this project will go ahead. It is important, especially in times in economic difficulties, that we don't disadvantage our most vulnerable children, our children on the autistic spectrum."

Well that's an admirable sentiment, but the Middleton centre would be about as useful to the lives of Irish autistic people as a chocolate teapot. Middleton is in the middle of a country with appallingly bad public transport links, miles from any sizable city. The centre has a 1 page website which sets out its aims:
  • Training, Advice and Guidance
  • Research and Information
  • Educational Assessment
  • Learning Support
But why should people have to travel to Middleton for all this? There is already a training centre in Belfast run by Autism NI, wouldn't it make more sense to improve the services offered there than to start again form scratch? No doubt there are training services offered in the republic too that could be improved.

Research and information- are we really expected to believe that a world class autism research centre can be built from scratch in a village of 240 people? Where is the nearest university? Are the very best in autism science going to move to Middleton? Are they going to equip a new lab space? Are there not already bodies like the admirable Research Autism set up to share "information resource[s] for parents and professionals" and with a charter to "publish and disseminate research findings"? It sounds like more wastage to me.

Educational assessment and learning support can be carried out in the child's home or school. It is important to have more well trained and knowledgeable people who can do this work. Again, the funds can be put to better use to improve the training of teachers, to employ more speech and occupational therapists, well paid and dedicated classroom assistants and educational psychologists.

There is so little help for parents in NI when they are told their child is autistic. There needs to be much better access to diagnosis, more of a support system in place in each area post diagnosis, more opportunities for our children to join in with groups and classes, and an overhaul of the educational opportunities available for those (the majority) who opt to have their children educated at school. However, all changes must be based on the evidence and not on the loudest voices and special interest groups calling for ABA for all or unproven biomedical treatments.

I can't even begin here to address the dire state of provision for autistic adults in Ireland.


Lisa said...

Apart from the terrible waste of the 6 million I was actually delighted to see this white elephant abandoned.

When it was presented to us at the Education Department's Autism Conference last April, the back row of parents who managed to get last minute invites to this junket were apalled to hear what had been planned for Middleton.
A centre for CHILDREN who had FAILED was the synopsis. Instead of putting resources into exist state and charity funded autism units, ABA schools and Outreach and Mainstream placements of children with Autism and Aspergers; The plan was to wait for them to be expelled from whatever service they were barely receiving and then take them up to Middleton. On their own. There would be no intervention and support of the service that decided to "expel" the child, no home based parent support or intervention and no plan for repatriating the child back into the services that "rejected them"

As a parent I sat their open mouthed as the fellow giving the presentation continued to refer to the child as "failing" rather than the services.

6 million euro would have saved Barnacoyle ABA school and opened it up to even more children with an on-site based clinical team who could provide outreach services to kids graduating from ABA to mainstream. 6 million would buy the site Barnacoyle is on and ensure it can continue to provide much needed weekend respite to families in need of a short break in order to concentrate on their other kids or re-charge their own batteries, knowing their child with autism was safe and happy. (it's a beautiful centre)

6 million would provide a lot of home based respite with qualified personnel and parent training.

6 million could support clinical services to outreach and mainstream placements of children with ASDs across the Island. To train the teachers to understand how these kids learn and to make allowances.

Everyday I read of parents drowning in the indifference of mainstream classroom staff who have little or no training in Autism, and who are unwilling to educate themselves. Kids who would otherwise benefit from socialisation and access to academic curriculums, but who are suspended or excluded for "answering back" (when all they are doing is being factual)

What was ever the point of this centre? and hey in our current schmozzle of an economy, watching 6 million pissed away is daily news.

I'm not mourning the loss. I say direct what ever funding is left (precious little) towards existing best practice and NFP services that are offering hope and opportunity to families like mine everyday.


Sharon McDaid said...

Hi Lisa
Not surprisingly, you know more about this place than I do. I had heard of it but never really paid attention to exactly what its aims were, to my shame.
It is a white elephant and like you I am pleased to see its funding removed. It seems like it was dreamed up to tick some North South initiative box rather than to actually help the people who need it. I agree also that the money could have used in so many other better ways. It's infuriating.