Saturday, March 2, 2013

Canadian Autism Organizations – Who to Trust?

Autism Parents are arguably the most vulnerable of any parent group.  The individual nature of autism, the seemingly random nature that it affects families has a pattern-seeking and thus god-fearing species like ours desperately seeking some semblance of a cause.  Of course the scientific consensus is the wiring in the brain is different in individuals in autism.  However, that fact doesn’t disperse the belief in refrigerator mothers, vaccines or the various re-brandings of gut causes.  So who to turn to for advice? 

Autism Society Canada – 
This group has been very silent in recent years (see bottom of this article).  It is a parent organization to smaller groups such as Autism Ontario, Autism Manitoba.  The Autism Societies, for the most part, do not address controversial therapies.  They instead advocate for access to traditional therapies such as ABA and IBI, speech & OT.  They inform parents and professionals on IEPs and other education rights.   Their mandates include educating families and use the slogan “realizing potential”, implying that with community and family support, individuals with ASDs can be successful members of society.  Broken down into provincial territories and again into city and rural communities, this is a grassroots organization.

-          Logos:  Usually portray an individual or individuals.  Puzzle pieces are never used.
-          Focus:  Rights of the individual, quality of life, support groups, employ-ability, and community events.
-          Funding:  Private donations from individuals, memberships, volunteer-run, government funding.
-          Tenure:  Founded in 1976 (However, some sub-organizations have 40 years of operation).

-          Declaration:  I have volunteered for a provincial branch of this organization at the municipal level.

 Autism Speaks Canada – 

An off-shoot of the American organization Autism Speaks.   Both organizations are actively seeking a “cure” for ASDs and view individuals with ASDs as suffering.  This has put them at odds with individuals on the spectrum, other organizations, and the “neuro-diversity” movement.  In the USA, associated with since discredited organizations such as DAN!  and ARI; however, in Canada this association has been muted and the Canadian organization has been more focused on distributing resources to other autism agencies.  The resources for families and other organizations are of high quality – especially the “red-flag” videos.
-          Logos:  Puzzle Piece, usually in a light blue
-          Focus: Research in a variety of treatment methods, promotion of the organization (branding), supporting community programs through donations.
-          Funding:  Toys R Us is a huge sponsor both in Canada and in the USA, private donation, NO government funding.
-          Tenure:  Founded in the USA in 2005.
-          Declaration:  No conflict of interest.

-          **Amendment:  Since I wrote this article, another blog published some finding that may explain (on the American side of things), my observations above:

Autism Canada Foundation 
An upstart in the national stage, Autism Canada Foundation has quickly found its voice in the mainstream media, an organization that CTV or other media outlets immediately ask for comment.  However, it has had a more difficult time defining itself and has almost a schizophrenic introspective – claiming to want to prevent autism from occurring and yet promoting the contribution of individuals with autism.  The core values include promotion ALL possible “therapies”, even discredited ones like homeopathy.  Most scathingly, it’s current Executive Director Laurie Mawlam has personally attacked critics who question the organizations recommendations of biomedical and discredited treatments to newly diagnosed and vulnerable families. 
Logos:  Parent and child reaching for a star
Focus:  Distributing (questionable) information to families
Funding:  Donations, some government funding.
Tenure:  Founded in 2010.
Declaration:  After respectfully commenting on the organization’s recommendations that parents try dis-proven treatments, and blame vaccinations (since retracted) and that the cause could not be genetic (since somewhat retracted), I was personally contacted by their Executive Director and asked to not participate.  It seems she took the critique personally as an attack on her parenting choices rather than my intended purpose of pointing out that science is not on the side of the organization’s assertions.  I found this contact very disconcerting and unprofessional.  I include this anecdote because I think it highlights some important growing pains of the organization and the moral competency of its leadership.

Verdict:  Reading the declarations, I’m sure this is obvious, but it bears explanation.  

The disconcerting quiet of the Autism Society of Canada and its societies and the quick and sudden rise of groups like Autism Canada Foundation and Autism Speaks Canada is indicative of the other culture war – the culture of autism.   

Since about 2005, there has been a battle for the soul of the autism parent (whose numbers have ballooned), the established charity – Autism Society Canada has not dabbled in vaccine causation, whereas the newer organizations both have and have both retracted somewhat from that belief.  That experience translates to treatments as well.  Autism Society has a few groups that promote GFCF diets, but seldom going beyond that point.  Autism Speaks seems to be positioning itself, in Canada, as an alternative without actively touting alternative medicine.  Autism Canada Foundation actively promotes alternative medicine.  Experienced parents in the world of autism have been and still are being shouted down by false prophets Wakefield, McCarthy and alternative medicine practitioners.  For parents, it boils down to whether you belong to one of these two groups:  1) True Believers who believe even false hope is still hope and who must try everything (kitchen sink) and 2) Mindful Skeptics who need hard facts and are willing to accept their hypotheses are wrong.
Not included in this summary:  Geneva Centre for Autism as it’s largely a Toronto-based organization and not yet national. It focuses on training for parents and professionals as well as vocational training for individuals with ASDs.

Recommendations for parents looking for advice from an organization: 
-          Look for commonalities from all these organizations, especially library lists.  Example: all of these organizations would agree Temple Grandin is a recommended read.
-          Decide what you want from or to contribute to the organization.  Do you want your child to magically become neuro-typical like Pinocchio, or do you want to ensure his rights as a person are respected throughout his life.  (Yes, that is my bias you’re sensing).

General Autism Advice:
-          Attend the autism not as an emotional issue when deciding treatment or other big decisions, but as a business or as a project.  This distance will give you objectivity so you can recognize when another parent or an organization or an individual is selling you a treatment that won’t work or if the IEP actually isn’t making sense to you.  Communicate treatment options with your spouse or co-parent and accept criticisms of the treatments.  Example: is IBI effective at this time?  How can I measure it?
-          Accept that autism will be a life-long condition for your child – this is the hardest part.  Whether or not there is improvement in the condition will remain to be seen.  Accepting your child and accepting your child’s autism are two very different things, and there is a grieving process which you must allow yourself to do.  Even if it means delaying a treatment somewhat.   Autism is not a superpower, but neither is it a curse, it is.  It just is.
-          Seek support not just from like-minded individuals, but also individuals who you disagree with.  Examine why you disagree with them.

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