Sunday, August 16, 2009

Facing Autism in New Brunswick (and Conor) 3 Years Later

Conor, October 2007

Conor, August 2009 (2 days ago)

In a few days it will be three full years since I began this autism blog. Things have changed in 3 years and things have remained the same. I have changed ... some. And Conor has changed ... a lot. The autism world for the most part has not changed at all with the same arguments being recycled over and over. The good news ... or bad ... if you are a faithful member of the Autism Hub ... is that I enjoy blogging and plan to continue.

I have written previously of my motivation for starting this blog and will not do so again other than to say that I wanted to express my views about autism a subject of utmost importance to me because my buddy, my son Conor, has Autism Disorder. Today and each day I pledge to continue to fight for a better life for him no matter what obstacles are placed in my path and no matter who places those obstacles there.

I do not accept the descriptions of autism offered up on major media publications like CBC and CNN which tend to ignore the harsher life challenges faced by the more severely affected. The CBC, in particular, caters to the views of Michelle Dawson and some other High Functioning Autistic Persons and persons with Aspergers Disorder who do not want to be cured of their autism and therefore feel that no person with autism disorder could really want to be cured. I reject wholeheartedly such attempts to impose their personal feelings on my son.

Three years ago my immediate interest was the impending election in New Brunswick. For parents of children with autism the Liberal Party of then opposition leader Shawn Graham offered a real choice. In the election campaign Mr. Graham made very specific promises:

1. Integrate services for young children and their families by enhancing and expanding the Early Childhood Initiatives Program to ensure a smooth transition into public school for children identified as at risk or those with special needs, such as autism.

2. Provide UNB-CEL autism training for 100 additional teaching assistants and Methods and Resource teachers each year for four years.

There was some fierce resistance from the education bureaucracy because the commitments arose out of consultations with stakeholders and civil servants could not claim career ownership of the commitments. The CUPE local union representing Teacher Asistants has also opposed the commitment because not all of their members could pass the entrance and graduation requirements for the UNB-CEL Autism Intervention Training program. But, Premier Graham has been honoring those commitments, together with former Education Minister Kelly Lamrock, in the three years since that promise was made.

Federally not much has happened to help autistic children in Canada over the past 3 years. Our Fredericton MP together with Nova Scotia MP Peter Stoffer was able to get a motion passed which essentially recognized the need for a National Autism Strategy for Canada but it did not do much more than that. The much more concrete private members bill from PEI MP Shawn Murphy was defeated by a coalition of the Harper Conservatives and the Bloc Quebecois. It is clear that as long as Stephen Harper, who has never been a big fan of Canada's public health care system, remains Prime Minister there will be no REAL National Autism Strategy which addresses the funding requirements of the provinces struggling to provide autism services across Canada. Only the parties responsible for our national medicare system, the Liberals and NDP, will consider a REAL National Autism Strategy and parents of autistic children would be well advised to elect either one or both to govern if they hope to see a REAL National Autism Strategy put in place to ensure interventions, education and residential care for all of Canada's autisic children and adults in need.

Canada has some very prominent autism researchers but they tend to be old guard researchers like Eric Fombonne and Laurent Mottron; interested in pursuing their pet theories about the nature of autism but doing little to actually advance our knowledge of causes and cures for autism. (In fact Mottron has stated that the notion of curing autism is nonsense). The United States, which has led the way in providing credible, evidence based assessments of autism interventions, also leads in seeking to find causes and cures for autism (Once again, this Canadian autism Dad says God Bless America).

The "it's gotta be genetic" paradigm that Teresa Binstock described in 1999 as the basis for funding decisions for autism research still dominates the studies that are being done and the discussion of autism issues but it is beginning to change with an emerging consensus that autism disorders result from an interaction of genetic, environmental and biological factors. As the authors of the recent California study pointed out though autism research funding still grossly favors genetic over environmental autism research. But at least it is starting to dawn on some at the IACC that they have to start looking at environmental factors.

On the controversial issues of vaccines and autism I have changed my mind. While I once accepted without questioning the public health authorities position that there is no vaccine autism connection I am no longer so sure. I have read the comments of people like Dr. Bernadine Healy and Dr. Jon Poling and I am no longer convinced that the science is closed on these issues. As the public health authorities commence a campaign to provide as yet untested Swine Flu vaccines to pregnant women and young children, vaccines containing both thimerosal AND adjuvants that enhance the effects of the thimerosal, I am very mindful of Dr. Healy's caution that the mercury based thimerosal crosses the placenta. I can't help but wonder whether the 2009 Swine Flu panic will give rise to an Autism Baby Boom, yet another dramatic increase in autism diagnoses, in the year 2011 and subsequent.

I have enjoyed, for the most part, the people that I have met over the internet by blogging. I am not the easiest person in the world to agree with on a good day and with autism there is always room for intense disagreement on most issues. But I have come to "know" many people that I believe I like even though I disagree with them on many issues. Of course there are others who do not fall into that category but I will say nothing about them.

For me personally the biggest change in the last 3 years has been with my buddy Conor. He has grown like a weed, now standing 5' 11" and counting, at the age of 13. Every day living with Conor brings challenges. His severe Autistic Disorder is no picnic in the park. But every day without exception has also been a tremendous joy.

Where I part company from those autism parent bloggers who espouse the joy of autism philosophy is that while I love my son dearly, and enjoy my time with him each day, I refuse to sweep the negative realities of his Autistic Disorder under the carpet. I refuse to praise what is at bottom a neurological disorder that restricts his life opportunities. I refuse to do my son that disservice. I love him far too much to do that.

Thank you to everyone who has taken the time to read this blog from time to time even those who disagree with me. I intend to keep on blogging and I hope you visit again.

Conor's Dad

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Anonymous said...

Thank you for fighting the good fight. I really appreciate what you do.

navywifeandmom said...

Keep blogging away.

I don't see how anyone could ever find you offensive and think it's odd that ND thinks you are. I have never seen you write anything remotely rude to anyone and whenever you disagree with people you always do so respectfully.

Marius Filip said...

Very moving post.

Keep on fighting for the good of Conor and other children with autism!

Claire said...

Yours was the first blog I ever read, when I had no idea such things existed...I was searching "Yude Henteleff" in my search for inclusion issues. I was completely taken with what you wrote and with the whole "blog" concept. Plus, you're Canadian! Thanks so much and Conor is a lucky kid.

Anonymous said...

I have only recently started following your blog... I am the mother of four children... two biological kids and two foster boys who both live with Autism. I was an EA working in the ontario school board for 15yrs and felt I needed to do more... I now proudly raise my boys with Autism..I advocate and do what I can. I just wanted to tell you I truly enjoy our blog... keep blogging..

Unknown said...

One of my favorite autism blogs, so heartfelt, and so bare bones truthful.

Thanks for sharing, and stay strong!

robert said...

It is people like you that are able to teach me much about life and its strength, something I am just getting to learn.
Thank you and please have you all a nice start into the new week.

Tanners Dad said...

I have years of posting but only a year of blogging. You are a motivational and inspirational model for all Fathers dealing with Autism. When it seems like the world is on the brink of insanity your words point out the obvious. We have been patient for over 66 years. How many Generations will be lost. We must ask the world... How much Longer... Make it resonate through every fiber of every being in the world How much longer, World, How much Longer? #Autism

Jason said...

This is a great personal site that you have here. I have site myself where people can debate on controversial topics, 24/7. It's time for there to be more power to the people.

When you get a chance, let me know what you think. Also, maybe we can do a link exchange or something. Let me know.


Anonymous said...

What a wonderful post Harold! You should see Justin....he's as tall as I am now.


Unknown said...

Dawn I look forward to seeing Justin agin. I have caught glimpses of him at Leo Hayes from time to time when there for family reasons.

Unknown said...

To everyone who commented thank you for your kind words. I appreciate them very much.

KC's Blog said...

You are awesome! Keep fighting! Conor is a gorgeous young man. He's growing like a weed! What a handsome fella!

Julie L. said...

Happy 3 three years blogging. Connor turning into quite the handsome young man. The tension between the different communities(neurodiversity and biomed, etc) gets to me sometimes. I try to take a middle of the road appoach, but it gets lonely there sometimes.

Unknown said...

Thank you Julie L.

I liked the image of the Justin Waterman print "suspicion"??? on your blog site. The one with the children playing a game together with one boy off by himself.


Julie L. said...

I really liked that painting too. : ) J.W. is one talented guy.

Anyway, I'm wrapping up my series on creative dads and will conclude with a shout out to you, along with a nod to one or two other dads. The post should appear today or tomorrow at my blog.