Wednesday, April 2, 2008

Running FOR Autism, not AGAINST it. Why we don't support Run The Dream

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.

16 comments:

Autism Reality NB said...

jypsy

It is very disappointing to see you try to smear parents and other people who care who are trying to cure or treat autism disorder by equating it with the McCarron case.

You are entitled to your opinion. You are entitled to argue that having a disorder is a good thing. But for those of us who disagree with you there is no need to make such silly and offensive comparisons.

You say talk to autistics. But there are some autistics who can not engage in that conversation. Their parents and loved ones do that for them. And not all Aspergers/High functioning autistic persons share your anti-cure views either.

Suzanne said...

jypsy, it is very disappointing(if not surprising) that neither the Howards, nor HDinNB understand/support/value this simple statement "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.
also, Karen McCarron was driven by such lack of understanding, so it IS relative to the point that Alex cannot support "Run the Dream"
Run-on RunMan! Your efforts to educate emergency personnel are inspiring

Ralph Smith said...

jypsy and Alex, many thanks for saying it right - and for running it right.

Joseph said...

Harold: If anyone is trying to smear people here, it is you. And you are at this constantly. I read the post again to try to see where Jypsy equated "autism advocates" to Karen McCarron. You are obviously referring to an addendum at the end of the post; a postscript as Jypsy called it. It follows in italics.

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.


At no point has Jypsy equated Karen McCarron to any "autism advocate". She's simply asking pointed questions about Dr. McCarron's state of mind, and how it was brought about; a state of mind which has been documented in court and other accounts.

Your misrepresentation of Jypsy's postscript is disgusting.

You are incapable of addressing the substance of the post so you latch on to any bit that might let you discredit your opponent. It's easy to get sick of your feeble and unsubstantiated attempts to discredit anyone who disagrees with your grim views of autism.

You want pity? You have mine, don't worry.

Michelle Dawson said...

jypsy and Alex, this is right on. My hat's off to your hard work and leadership, and to the fantastic example you set.

Autism Reality NB said...

What a surprise, Joseph and Michelle Dawson dropping by to throw insults at someone who disagrees with them.

I have read your "critique" Joseph and it is nonsense. jypsy is clearly insinuating a correlation between autism cure dialogue and the actions of McCarron. Your childish insults don't change the facts. And your friend suzanne actually says expressly what jypsy insinuated.

If there are harmful voices in the autism world it is the voices of those, like Ms Dawson, Joseph and now jypsy, who attack parents and caring people trying to help people with autism disorder.

Sharon said...

It's astonishing that anyone would imagine for a second that Alex or you would choose to collaborate in any way with someone expressing such mistaken, damaging and prejudiced views about autism.

If only more people would take on the message on Alex's shirt.

Re Mr D, he appears rather delusional.

Joseph said...

Karen McCarron had a curebie minset, a mindset of doom about autism; yes, one that is very similar to that of many "autism advocates". In fact, she was well acquainted with DAN! doctors and such. This can be documented, although there's not much sense on harping on it day in and day out.

Does this mean that all parents with a curebie mindset are the same as Karen McCarron, a convicted murderer? Do you Harold actually believe this is the logical conclusion of the factual observations I made above? Why? Explain that to me.

Kelly5sons said...

Hi Jypsy

Mark and Kelly here. As many are well aware our oldest son Greg also has autism. He is one of the smartest people that I know. And I would never want to change any one thing about him. His Autism makes him what he is.

The problem with a lot of people perception of Autism is that this is something that should be fixed, like these people are broken.

They need a reality check. Maybe they need to spend some time inside a Autistic persons head they just might like the way they feel and think.

Mark and I have spent far too many years worring about Gregory and trying to figure out how we can make him more comfortable in the world the way we perceive it. To only come to the great and releiving reality that he is a very happy well adjusted young man with many talents and many challenges.

Just like the rest of us.

The only negative is the way that the rest of the world perceive him.

Mark and Kelly McCosham

Anonymous said...

If you read Mr Doherty's latest post on his blog it's quite revealing--you all should shut up because you're high functioning, you won the autism lottery and he didn't. You're all house slaves and his kid is a field hand kind of thing. But it is sad that while he yearns for a cure, he cannot envision it ever actually happening, he mourns the life of an 11 year old kid who is still here and very much alive.

jypsy said...

Today, after emailing Mr. Mike McCarther from "Run The Dream", we finally got a reply - it was short, offensive, and contained language I won't repeat on this blog.

Unbelievable.

jypsy said...

We have blogged about or letters to Mr. Howard and his Team, and their replies, here at "Laughter & Profanity - Run The Dream's Response to Our Concerns"

Sherry said...

As a mother of a 12 year old boy diagnosed with autism......I say: "Way to go Jonathon...Thank You!!!"

And Thank You to every person out there that understands that my son deserves the best quality of life possible for him!

Sherry Gambin Walsh
NL

jypsy said...

Sherry,

Mr. Howard is spreading the message to the general public that your son is a burden and that people like him should ultimately be prevented from existing. How does that promote your son's quality of life?

Ettina said...

Autism Reality NB,
Are you aware that jypsy is autistic?
Are you aware that autistic people with higher-level communication skills usually use language more literally than most people?
Those two facts mean that you should be *very* careful about claiming she's insinuating something. Most autistics do not tend to insinuate things, even if their communication is superficially normal. We're known for being quite blunt, and having people read stuff into what we say that isn't there.
jypsy, I've met autistics who are pro-cure. droooopy (not sure if I've got the right number of o's) who is on youtube and the autismspeaks forum is one of them.

jypsy said...

Ettina,
I know of pro-cure autistics as well, Marty Murphy is another. "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." meant just that. I know *of* Ms. Murphy and Drooopy but they are not part of the autistic community, online or off, that we frequent. I know their names, I've seen some of their work but I don't "know" them. I expect it could be said that there are "big parent & professional run Autism Organizations" who share our POV and not Mr. Howard's as well (though none spring to mind at the moment).

Mr. Doherty is well aware of my diagnosis and that of my children. He says "there are some autistics who can not engage in that conversation" but many, many more *can* and it appears we are ignored or receive laughter & profanity when we do.