So, there's this guy..... who wants to run across Canada... (Okay, as the mother of a guy who wanted to run across his Province, I can relate...) So, he goes looking for a "cause" to raise awareness about and funds for, while he runs. His research brings him to Autism (or, more precisely, ASD - "Autism Spectrum Disorders"). Again, I can relate. Our Autism Celebration Run was about fulfilling Alex's dream to run across Prince Edward Island, to raise awareness about Autism (ASD) and to raise funds to benefit our Island's autistics .
The similarities between Alex's
"Autistic Celebration Run" and Jonathon Howard's
"Run The Dream" Run appear to end there. Alex ran
FOR Autism, Mr. Howard is running
AGAINST Autism.
Mr. Howard, while admitting his life is untouched by autism, is out to inform
"Canadians who have been spared the burden of dealing with Autism" that autistics are a "
burden for the rest of their lives" to our parents, family members, teachers and social support groups. He wants to "
promote a unified and effective approach in Canada to dealing with Autism, and ultimately preventing it or finding a cure."
It appears obvious from those sentiments that when he decided to pick autism as his cause he decided not to talk to autistics about it. In fact, my email to him, CC'd to every one of his Team members, has gone unanswered. Meanwhile, two different Provincial Autism Societies have cooperated to get a message to Alex asking if he's like to join Mr. Howard on his run when he's on PEI.
"Why would Alex support anyone who considers him to be a "burden" and have a wish to prevent people like him, his brother and his mother from existing?" I asked. Again, no reply.
Despite its claim that "We promote public understanding and acceptance of people with Autism",
my Provincial Autism Society is supporting Mr. Howard and is planning a "Meet & Greet" for him. Yes, the PEI Autism Society donated $500. to The Autistic Celebration Run.
We've thanked them before and I thank them again. As well as directly benefiting from
Dennis Debbaudt's Autism Safety Training Seminar , the parents who make up the PEI Autism Society can take comfort in the fact that PEI's Law Enforcement Agencies, First Responders, Medical & School personnel and Early Childhood Educators
were also trained in Autism Safety, Recognition & Response . This education remains
ongoing in Police Departments, at the Police Academy, The Firefighter Training Academy and Holland College Paramedic courses etc, etc. The only meeting & greeting that happened with PEI Autism Society Executive was not during Alex's 14 day run, despite numerous invitations, but occurred, informally, when members of the Executive Board and others attended the free Autism Safety Training Seminar we presented with Dennis Debbaudt. We did meet a couple of people from the autism community who had read about us during the Run but contrast that to the outstanding support we got,
monetarily & morally, from
the Running community.
As well as the three free Safety Training Seminars, resources, in the form of training videos, picture communication cards and autism wallet cards were put in the hands, vehicles, detachments and trainers of PEI's Law Enforcement & First Responders. Every school age autistic child on PEI was given a wallet card as well.
Thanks to PEI's media -
CBC Radio & TV,
The Western Graphic ,
The Journal Pioneer,
The Guardian and
The Eastern Graphic (
a number of times), good, positive, awareness about autism was spread across PEI.
Our message and purpose was discussed, throughout the entire planning stage, with a good number of autistic individuals. We also talked to parents and family members. Our message of highlighting ability, while recognizing disability, of demonstrating potential, and discussing appropriate supports, services & education, was supported by the autistic population.
Mr. Howard's message, that we are a lifelong burden and should ultimately be cured and prevented from being, while it may be shared by some big parent & professional run Autism Organizations, is not supported by Alex & I nor by any autistic individuals we know. This kind of social stigmatizing will do none of us any good. As well, his contention that autistics are a burden is simply not true.
If there is a single member of
The PEI RoadRunners Club who believes Alex is a burden, please seek me out at the next run you're at and tell me that. I genuinely want to try to understand your reasoning. And, if you believe we are all such a burden, explain why your Club's executive saw fit to honour Alex with
an award for Inspiring fellow members and me with
an award, acknowledging my helpful, voluntary, contributions. If you honestly believe that people like Alex & I should be prevented from being, please inform and enlighten me. That is absolutely not the impression the PEI RoadRunner's membership has given me these past 4 years.
If you feel a need to support someone running for autism, and you want to keep the funds on PEI and benefits autistics, The Runman Fund is still open. (If you want to fund an autistic-friendly National or International organization, ask me, I can recommend a few). Write a cheque to "The Runman Fund" and take or send it to
The PEI Council of the Disabled. I promise you it will be put to good use. Although every Police vehicle and Ambulance has a picture communication card, our extra funds ran out after supplying only one of every three Fire Department vehicles. We would very much like to supply the other 2/3 as well as the schools and medical personnel who have requested them. Still, what we accomplished was well beyond what we had hoped to. Alex fulfilled his dream of running across PEI, we raised awareness, our message was heard far beyond just PEI and inspired others, we brought
Dennis Debbaudt to PEI and presented 3 free Autism Safety, Recognition & Response Training Seminars and had money left over to put resources in the hands of the people who should have them.
We do not support Mr. Howard's "Run The Dream". Why would Alex support anyone who considers him to be a "burden" and have a wish to prevent people like him, his brother and his mother from existing? Would you support someone who felt that way about you? As much as I wanted to like and support this guy who wants to run across Canada in the name of autism, I cannot support his harmful message.
If you ever ran behind Alex prior to August 2006, you might have read the message on the back of his T-Shirt, it's the same message that's on the bottom of every race post he blogs -
If you didn't understand his meaning before, I hope you do now.
I also hope you care enough to listen to autistics speak about autism.
As a postscript, yesterday Karen McCarron was
sentenced to serve 36 years in prison for murdering her autistic daughter
Katie. What was the message Karen McCarron got that caused her to so
want a life without autism that three year old Katie paid the ultimate price? Mike McCarron, Katie McCarron's grandfather, felt
abandoned, offended and betrayed by "advocates" parading their "horror stories" about autism. Paul McCarron, Katie's father had
a message of his own upon hearing the guilty verdict -
"I ask all parents especially those of children with disabilities to ALWAYS
love your children and be proud of them.
Cherish every moment you have with them.
Love, patience and tender efforts are the best therapies."
That is a message worth sharing.
~*~
Today is the United Nations declared World Autism Day.
Some things done in the name of Autism Awareness can, in fact, be quite harmful to autistics. Listen to the message. Do you actually believe it? Does it help autistic people? Would you repeat that message to our face?
Would you want it said about yourself and/or your loved ones?
Be aware.
Some comments from the Autistic/Autism Community:
CBC contacted me the morning of December 8th, after James had been found in thick brush and snow, two days and nights after following his dog Chance into the woods near his home in Cape Breton. James had been airlifted to the IWK Children's Hospital in Halifax in critical condition suffering from extreme hypothermia. They wanted to do a story on "the challenges or strategies that could be involved in searching for a lost person with autism" and because Alex and I had given a training session to PEI's Ground Search and Rescue volunteers in January, they hoped I could provide that information.
