Why the Canadian Government Can’t Run a Hot Dog Stand at a Baseball Game!

The Canadian Government made an announcement today (November 8th) that is purportedly significant. On closer inspection, I don’t see anything about which to get excited.

After a bunch of lawsuits, a public relations embarrassment that lead to the creation of a national website in the early 2000s, finally with the help of a turncoat MP who sold out the entire autism community while his son received science-based treatment, the Canadian government has announced the creation of a academic chair in autism. What is the expertise of the person who is going to fill the chair? Is it someone who is on the cutting edge of treatment research? Is it a researcher who is pushing the envelope when it comes to adding to the body of knowledge in the one area that has the most data, applied behavior analysis? No.

The person whose expertise is supposedly promising that it merits an academic chair is
Jonathan Weiss, Ph.D, an assistant professor at York University. The website indicates the following as areas of specialty for Weiss:
  • Families in distress,
  • Asperger's and "cognitive therapy"
  • How to teach graduate students this area of expertise,
  • Caregiver's perspectives when failure has occurred and the kid winds up in the hospital.
Not only is this chair worse than useless for any parent with a child suffering from autism, but the absence of a relevant researcher in this field is a slap in the face of any parent with a child who is afflicted with genuine, debilitating autism (as opposed to Asperger’s syndrome).

Why should we be surprised? This chair is supported by The Canadian Institutes of Health Research (CIHR). This is the Government of Canada's health research investment agency and the same folks who fought against families in the landmark
Auton Case at the Supreme Court of Canada. The CIHR claims that it’s mission is to “create new scientific knowledge and to enable its translation into improved health, more effective health services and products, and a strengthened Canadian health care system.”

In fact, based on this choice for this academic Chair, one could argue that the CIHR’s true mission appears to be to make sure that academics in Canada don’t actually come up with innovative treatments because then the government would have to pay for them. Instead, they agree to have researchers who are not going to be innovative for children who really need it, but rather, study us, the parents, because that’s far easier.

Computer Data Tracking for ABA Programs

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When I was first introduced to the world of Applied Behavior Analysis (ABA) over twenty years ago, I was impressed by the object nature of the therapy. I watched programs introduced and data taken in a variety of ways: tape on a therapist’s thigh, hash marks on paper, piles of cards separated into correct, or prompted answers. There were many ways to take the data, but it was always by hand.

With the computer revolution, all kinds of programs were introduced and industrious parents created companies to sell improved ways to take data using a computer or iphone. Just recently a parent who follows the Autism Pundit blog sent me a link to download,
free of charge, software that allows ABA data to be computerized and developed to replace paper and binders with a laptop. What is new about this computer program is it allows ABA teams to build data sheets/programs of their choice, and video programming is one of its main strengths.

I haven’t used this software yet, but for those of you who are still using a pencil and paper for all your data collection, here’s an opportunity to possibly make your life a little bit easier! For anyone who has had experience with the program, please
send me a note to share your thoughts.

An Autism Treatment Mirage Arrives from the Desert

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Just when we thought our children had been experimented upon enough, without concern for science, we are now introduced to a new autism elixir, this time from the desert: camel’s milk!

Here’s the justification given for using camel’s milk to treat autism: There is a theory that autism may be caused by some type of inflammation. Camel’s milk is thought, by some, to have an ameliorative effect for symptoms of autism by reducing inflammation. So why not give camel’s milk to children with autism?

Here’s why:

1) There are no controlled studies published in peer-reviewed journals that support camel’s milk as a treatment for autism.

2) Camel’s milk can be dangerous due to the fact that:
- the milk is raw
it comes from animals that can harbor TB and E-coli.
- milking techniques are often unhygienic.
- it’s difficult to get milk to market safely due to lack of refrigeration in areas where most people raise camels, i.e., from desert nomads.

3) This so-called treatment has very compelling testimonials given by highly motivated parents
, supported by purveyors of camel’s milk who don’t seem to be disturbed about the lack of science behind this purported treatment. Uncontrolled parental observations of their children’s behavior after having been given camel’s milk, is all there is to support parents’ belief that camel milk is improving their children’s symptoms of autism.

Does camel’s milk treat what ails kids with autism? Who knows, but until there is some science-based evidence as to measurable benefit, we need to categorize this latest theory as untested at best, and potentially dangerous at worst.

The proponents of camel’s milk (and there are a few) need to show us the data that supports their claims of efficacy. Until such time, Camel’s Milk Treatment remains filed under quackery.

Parents should not endure severe autism unaided

Recently, I’ve noticed a trend wherein brave parents of children with autism who are severely affected, go on the Internet to tell all about the miserable truth regarding the disorder. To live with a child with classic autism is devastating and frightening. The accurate descriptor would be: nightmare!

Every time I read one of these posts, I can’t help but think: why are these parents doing this by themselves? Why is there no professional involved in setting up a treatment program for their child? If there is a bona fide autism professional involved, why is horribly egregious behavior still happening?

The science of behavioral treatment has come a long way and there are
professionals who are qualified to eliminate anti-social behaviors and encourage pro-social behaviors. If the issue is money, which it often is, these parents would be wise to see that what monies are available can possibly be redirected toward a behavioral treatment consultant who can set up a treatment program to extinguish maladaptive behaviors.

We all know that government programs set up to help are usually a huge pain to navigate. It’s exhausting and frustrating to advocate for one’s child in a mindless bureaucratic system. However, if the child is truly out of control and is aggressing toward the parent, it’s only a matter of time until the system inherits responsibility for that child. Therefore, it’s in the best interest of “the system” (i.e., less expensive) to support the child at home. If the parent can bring this message across successfully, the system will probably find monies to divert to the proposed in-home behavioral treatment program. If the parent cannot do this on his/her own, perhaps a
local advocate or attorney can assist in bringing the cost-benefit argument across persuasively to government officials.

It is truly outrageous that families of severely autistic children suffer in this way, especially when there is a viable alternative
a phone call away.

Medicare's Orphans: Fourth Trailer Available for Viewing

The organization, Medicare for Autism Now has just released its fourth trailer for the film Medicare’s Orphans. It is so powerful -- a must watch!!!! Read more...

Staging a Miracle: An Interview with Jason Eden

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An Inconvenient Truth for Autism film: Third trailer available for viewing

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Medicare for Autism Now has just released its third trailer for the film Medicare’s Orphans. Watch the trailer...

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Staging a Miracle: A Practical Parent’s Guide To Surviving an Autism Diagnosis, by Jason Eden, is a hard-hitting book I came across quite by accident. It has been many years since my child was diagnosed with autism so I don’t generally read books on this topic; however, part of the title “surviving an autism diagnosis” piqued my interest. The author, Jason Eden, writes in a blunt, brutally honest tone which is clearly designed to... Read more...