Monday, September 14, 2009

At Queen's Park - day 43

Today under Queen's Park there was a protest for taxi cab drivers. There were a few police cars and policeman, in case the taxi drivers become too unruly I think ;-) Nothing like that happened, but one of the policemen approached me and asked what am I hoping to achieve by protesting. I said I hope I will get the therapy funding for my son back. I have noticed that he had on his arm a tattoo of autism puzzle pieces. He told me his son is five and also has autism, and that he payed privately for his therapy, and that his marriage did not survive the stress of raising autistic child. I think that short conversation is so revealing of the ugly truth about how autism effect lives, not only of autistic children themselves, but of their families as well.
I do not think people who haven't gone through the experience realize the magnitude of effect autism has on family relationships. Divorce rate are at 80% among parents of autistic children, and nobody knows how having a autistic member of the family effects siblings and grandparents.

Here is a link to a study about family stress.

As I was writing this, I had a short visit from Andrea Horvath, the leader of the NDP. She said that they support my cause.

11 comments:

  1. You stated:
    "Divorce rate is at 80% among parents of autistic children,"

    Information from the link you provided:

    "It is heartening to note that research has not shown that parenting a child with a disability always has an overall negative effect on the parents' relationship. Despite all the difficulties, couples with a child with an ASD have been shown to be no different from typical parents when it comes to reports of spousal support, respect for partner, or commitment.7 Another encouraging fact: we could find absolutely no support for the 80% divorce rate for families with a child with ASD commonly cited around the autism community.8,9 A study looking at divorce rates for families of children with assorted disabilities found an average increase (over the rate for couples with non-disabled children) of only 5.97%.10 An Easter Seals' survey of families with a child on the autism spectrum, moreover, found parents of a child with an ASD to be less likely to have ever been divorced than the parents of a typically developing child.11"

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  2. Yes, I should of check my sources of information, and not repeat something I just saw on Youtube. We neurotipicals are like that with numbers. Specially ones with mommy brain like me. Sorry.

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  3. Then I would also question your "proven fact" that "50% of kids who receive early and intensive treatment lose their diagnosis of autism". Where did you get that? Does that mean you support the use of aversives?

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  4. Dear Maryna

    Please don't apologies to any one, because Autism is a disability and causes stress on NORMAL families living with autism and ABA is the only scientific proven therapy for autism.

    The 50% of children receiving ABA and losing their diagnosis of autism is based on a study done by Ontario scientist Dr. Adriana Perry.

    Funny that some people with autism collect disability cheque for their diagnosis while claiming that autism is just a culture or differently wired, shameless ehhh …

    On behalf of parents living with autism I admire your efforts to combat autism the disorder and to advocate for help to your child.

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  5. my neighbour's kid just started school and they are having a meeting this week because the teacher put her in a corner and put a cardboard box over her head.

    I don't know about other people, but this would cause a lot of stress to me.

    Another case for homeschooling.

    Anyway..

    There will always be someone picking at your opinion or what you wrote/said whatever to prove some point or promote some agenda. You get the basic things right in your posts Maryna, which is you are trying your best to improve the quality of your son's life.

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  6. This is a comment for jypsy:
    You want to discredit the old doctor Lovaas findings too? The study is old and repeating it would be would be unethical because it would require to deny treatment to experimental group. Government does it though because administrative indolence is immune to ethical concerns. Or may be I am wrong again? See I am not a scientist. I am not into numbers. But I witnessed in the private school my son goes to how couple of boys transformed from four years old reclusive, one word sentence loners to boisterous, talkative friends making first graders, I have seen low functioning teenagers stop everyday sefinjourous behaviors, and stated following directions, I have seen non verbal kids learn how to use communication devices. Do I know the statistical numbers? No. Do I need statistics to be convinced that therapy helps kids become more capable and happier individuals? No. I have seen enough through my own eyes.
    And would my mommy brain allowed me to keep my child in place where I would seen applying aversives? I am a mommy first, you know.

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  7. I agree Maryna- even if the divore rate is only margianlly higher than the average, the stress is there. It's real. We deal with the guilt and worry and stress on a regular basis and it isn't easy. Then there's the impact on our NT child who get neglected because of all of the time we spend with our child with autism and all the resources that are spent on him....and then that gives rise to the guilt and worry etc. it doesn't go away.

    The fact of the matter is that our province does not provide adequate services and meet the basic developmental needs of children with autism and this put s a tremendous emotional and financial strain on families. Let's not negate that.

    As far as ABA, many children do make huge gains with this treatment and it's the only scientifically proven form of intervention. If ABA can help our children reach their fullest potential and learn, why is it being denied to them. Other jurisidications have recognized that children with autism are entitled to treatment. Why not Ontario?

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  8. "The 50% of children receiving ABA and losing their diagnosis of autism is based on a study done by Ontario scientist Dr. Adriana Perry."

    I contacted Dr. Perry who denies this. She states that in the Ontario study she led, 11% "ended up in the average range" and goes on to say "not necessarily the same as loss of diagnosis". She also says that when kids were selected who were similar to the children in other model program studies, the number is "likely" in the 40%s.

    The agenda I promote is accurate information. I believe it is important. If you (all) don't, that's fine.

    Repeating Lovaas's study would not be unethical for the reasons you claim. There are plenty of parents who want things other than ABA for their autistic children. Those children could serve as controls. Lovaas did not claim "50% of kids who receive early and intensive treatment lose their diagnosis of autism".

    I did not address your opinions, just your scientific claims. I too am a parent. I have 2 autistic children (1 autistic, 1 Asperger's). I believe they deserve accurate, factual, information.

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  9. Dr. Adrienne Perry study results are posted on The Ontario Association for Behavioural Analysis (ONTABA) website http://www.ontaba.org/outcomeIBI.htm . Any balanced person will favour the results that IBI is the most effective and the only science based therapy for autism.


    “Repeating Lovaas's study would not be unethical for the reasons you claim. There are plenty of parents who want things other than ABA for their autistic children.”


    I am interested in examples of things other than ABA for children with severe autism!!!

    The only factual and accurate information for very few people is their disability cheque while celebrating the “Joy of Autism”.

    Again, shamless…

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  10. jypsie you say that "The agenda I promote is accurate information." Is your idea of accurate information suggesting that promoting ABA = promoting aversives.

    The agenda you appear to promote is what the previous poster calls "the joy of autism". WHy not respect other families' decision to use ABA as a form of intervention for their children if they deem it useful and effective??

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  11. I think that not every ABA based program is equally well run. So some have less success than others.

    My personal experience is this: There were 4 other kids, all boys dropped off at the same time I was dropping off Sebastian for last two years. So I had an opportunity to observe them better. Two of them blossomed and were ready to go to first grade after couple of years of therapy, and they would be talkative and social and indistinguishable among other kids. Third one is high functioning, verbal, but couple of grades behind his age, learning and making steady progress. Last boy is low functioning non verbal and self injurious, and that could be quite scary because of his size even two years ago, He is now much happier, smiling a lot, following directions, waving his hand and saying hi, and his self aggression is much less frequent now. That is what I saw with my own eyes. And what I saw is that 100% of kinds I know and was able to observe for extended period of time on regular basis is benefiting from well run intensive ABA program. About 50% not including my boy, and 40% if you include my son in to the group was able to, whatever you name it learn in regular class setting following same instructions neurotypical children do.
    Lovaas study is pretty close to what I was able to see. Do I need to read scientific journals to tweak the numbers for me? I am too busy for that.

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