Sunday, 2 December 2012

Congressional Hearings and The Toronto Star Series

This week in the United States, there were congressional hearings on autism.  As a Canadian, I didn't follow it as closely as I would have if I was American. 
From what I understand not one autistic was scheduled to speak at the hearings despite them being about autism!
There was a lot of lobbying by those in the autism community and the day before the proceedings, Michael John Carley, executive dircetor of Global & Regional Asperger Syndrome Partnership (GRASP) and Ari Ne’eman, President of Autistic Self Advocacy Network were invited. 
As the video is over 3 hours long, I only watched the bit with Michael John Carley and Ari Ne'eman speaking. 
They spoke about more services for adults.  Not putting all money into researching for a cure or prevention ("cough" Autism Speaks) , but into supports and services to help autistics and their families throughout their lives.  Autistic children grow into autistic adults.
The other speakers spoke badly about us, calling us an epidemic and costly burden to families and society.
Two great bloggers wrote about the hearings and their effect on them and those they love.
Arianne Zurcher wrote about Michael John Carley and Ari Ne'eman and their speeches at
http://emmashopebook.com/2012/11/30/two-autistics-spoke-how-many-listened/
and Paula Durbin-Westby wrote about the language used to describe us, the two autistic speakers, and various autistics responses to the hearings in her blog http://paulacdurbinwestbyautisticblog.blogspot.ca/2012/11/burden-burden-burden-oversight.html

Although there was a lot of negative language, it was good that autistics were finally invited to take part in hearings about them.  Maybe something good will come of it for all autistics in the States.

This picture was done by Karla Fisher at Karla's ASD Page https://www.facebook.com/#!/pages/Karlas-ASD-Page/155369821204141
 

Will Canada maybe follow one day in the future?  As in the States, there are not really any adult services here and what little there is has long waitlists especially if it is government funded.  For anything else, you have to have good deal of money to pay to get private services.
This morning there was an article in the Toronto Star: http://www.thestar.com/news/gta/article/1296365--the-autism-project-ontario-promised-a-plan-where-is-it
It was scary to read that  two years ago, Children’s Services Minister Laurel Broten thought “Autism is a relatively new disorder".  Maybe to her it was but it has been around a very long time.  People were locked up in institutions or at home with labels such as intellectual delay and childhood schizophrenia.
The Minister had also promised to strike a committee of experts to advise the Ministry of Children and Youth Services on the autism services needs in Ontario. It was a group that was supposed to have started by the fall of 2011.  It does not exist still in the fall of 2012.
The article spoke again of the increased funding for children's therapy and increased funding for adults with developmental disabilities.  Autism is a pervasive developmental disability, yet the services for people with developmental disabilities are usually declined to those of us on the autism spectrum, adult or child, who do not have an intellectual delay.  Therefore, we really have no service at all.
We'll see what happens with this after the current Star article and the the rest of the Autism Project series http://www.thestar.com/news/world/autismproject
Maybe some good will come of it.  Things seem to start to get done, however slowly, by the government when The Star does an in depth series.