Wednesday, October 07, 2015

Autism, Politics and the Return of the Run Jump Fly Boy





I have been engaged in autism advocacy during the recent Canadian federal election.  I do so at the federal level for the sole purpose of trying to ensure that all Canadians with serious autism disorders have access to Applied Behavior Analysis for treatment of their core autism symptoms.  

I have advocated for over 15 years with other parents and with politicians like the late Fredericton MP Andy Scott who with Nova Scotia MP Peter Stoffer did manage to put autism on the Canadian political map with their joint private members' motion.  The motion set out some directions for a federal National Autism Strategy, directions which have been totally ignored by the current Harper Conservative government and by their pet autism charity Autism Canada which has never contributed to the struggle by parents from BC to Atlantic Canada who fought for, and continue to fight for Medicare coverage of evidence based Applied Behaviour Analysis for those with autism disorders. Watching the Harper Conservatives and their charity Autism Canada continue to ignore the only science based autism treatment for autism can be discouraging but not defeating.

As long as I can have daily adventures with my son Conor, now 19, I will never quit, I will never stop fighting for the right things to be done to actually help people who actually suffer from autism disorders and related conditions.  Conor has had some serious health issues in recent years with the full blooming of his seizure issues and dangerous adverse reactions to some seizure meds.  Today though as we walked Fredericton's North Riverfront Trail that we have walked so often I saw something I hadn't seen in a while ... the Run Jump Fly Boy was back.  He flew down the trail jumping into the air, both feet leaving the ground and enjoying life to the max.  Then he sat on a bench with Dad for a few minutes soaking in the fresh fall air.  And it made his old Dad and grizzled autism advocate feel good too ... very, very good and more determined then ever to continue fighting for meaningful, evidence based treatment for all persons suffering from autism disorders and related conditions.

2 comments:

farmwifetwo said...

I on the other hand lobby for funds and freedom of choice. Demanding only ONE therapy be given funding is not acceptable. Personally, I would NEVER return my child to ABA therapy and NEVER recommend it to anyone. The only behavioural issue he's every had in 14 years was 8mths after he started IBI/ABA and he clawed his male therapist... personally, I had no sympathy by then for the man. Scary that only ASD children should be "trained", treated as robots or pets (shove the food in his mouth, maybe he'll figure it out faster... not in my world), made to sit for longer hours than regular children in high school while they are toddlers... no NORMAL child is treated so poorly.. so why is it ok for a disabled child to be treated in that manner. It is ASSUMED all the others can be "taught" instead and are.

I found my anti bill 360 report that I sent to all parties a week or so ago looking for something else. If necessary, I will expand it... request a chance to talk to a Senate committee... and maybe one day turn it into a book...

Either way... we voted this afternoon. As you know... you can't complain, if you don't vote.

Unknown said...

Farmwifetwo, once again you voice your hostility towards ABA treatment based on your personal negative experience and a few negative and unfounded stereotypes about ABA.

No one including me says that only ABA should be covered under Mdicare. The position of those of us who advocagte for ABA is the solid evidence base in support of its effectives in treating many autistic children.

If you believe that Medicare should cover treatments that do not meet the evidence based standard you are free to make that argument. It isn't necessary for you to deprive other people's autistic children of evidence based ABA treatment just because your child had a bad experience.

The evidence in support of ABA effectiveness for autism has been gathered in hundreds of studies over several decades and summarized and assessed in state and federal healther authgorities in the United States, Australasia and by the CMAJ.