The Way I See It: “Wizard, rumor has it that Autism Speaks has finally listened to us autistics. Is that true?

Subtitle: “Dorothy, it was only a matter of time…” – answered the Wizard of Oz

Two words that are considered really profane by autistics are “Autism Speaks”, and the reason for that is very complex. They have a history of painting Autism as a horrendous “disease” that needs to be eradicated, and the majority of autistics that I know view that as euthanasia or eugenics research in process.

I get that, but I also realize that if Autism Speaks had not formed a little over a decade ago, the world public would still be in “ignorant mode” regarding the word Autism and what that entails.

My biggest beef with them over the last (x) amount of years has been the way that they spend their donations, basically large salaries and marketing, a reasonable portion for research grants, and very little left over nor allocated for the benefit of us living with autism on a daily basis.

I will give that organization some credit, they have a wonderful website that does provide lots of tools to enable the parents of severely or recently diagnosed children with autism to empower themselves with a variety of knowledge, and about a year ago they introduced a database for helping autistics find employment. Whether or not the latter has had any success or not I have no idea.

This past week two blogging websites noted that Autism Speaks has finally modified their mission statement to exclude that hurtful four letter word “cure”. We autistics have known for quite a long time (our entire lives) that curing autism is an absolutely ridiculous objective.

Furthermore, Autism Speaks has introduced several “words” in their new mission statement that autistics have been championing and one of them is the magic word “acceptance”.

The international autism community which includes autistic bloggers are focusing on the declining revenue donations as an impetus that sparked this change in direction, and others are noting that about a year ago Autism Speaks added two well known autistics to their board of directors. I suspect both aspects are true along with many others.

How was this change received by the international autism community?

Not very well. They still view that organization as a “HATE GROUP”, and I doubt that any modifications in a mission statement will change that. However, future actions by Autism Speaks that reflects this new mission statement might, and only time will tell.

In the meantime, we have a split population that either believes in and supports that organization, and then the rest of us.

Those that view Autism Speaks as a noble nonprofit organization are primarily the parents of severely autistic children with hardly anywhere else to go for help but to their website, along with attending the various Autism Speaks Walks that seem to occur all year long now in lieu of just April, the Blue Month. 🙂 Those Walks are big donation vacuums and I assume a great place to meet other parents of autistics, and a person to person venue for commiserating or sharing personal stories.

Over the past few years I have read many stories written by parents about their autistic children whether it’s an article or a post on Facebook, and when I take the time to do that, I also utilize “empathy” to project myself into their position in order to contemplate how I would feel and what I would want for my child if he or she was severely autistic.

“Thinking Autistics” (bloggers etc.) often view those parents that write about their experiences as selfish or self-centered as if they are only concerned about how their lives have been impacted by having a severely autistic child.

And guess what? Their lives have been severely affected by raising and caring for a severely autistic child and they have every right to express their feelings as individuals. By writing about it doesn’t mean that they do not love their child nor want the best for him or her, it’s simply their method of venting in dealing with their own personal stress experienced on a daily basis.

That’s my opinion and it’s based on a deep reflection of my own life and the challenges that my mother had raising and caring for me, a severely autistic child.

My mother didn’t have an Autism Speaks nor a website of any kind to go to for information or support, she used her own intuition of what might work, what tools might help her severely autistic child, provided immeasurable support to that autistic child, and it paid off because that autistic child graduated to Asperger’s Syndrome as an adult.

What really annoys me about some of my fellow tribespeople (autistics) that criticize parents is their propensity to be extremely narrow minded with their viewpoints which demonstrates that they might be in the minority of autistics, those that lack an abundance of empathy for everyone.

What about the severely autistic child? What’s their point of view?

If that child happens to be blessed by not having the co-occurring condition of Intellectual Disability, I suspect they would have a lot to say about this, and often they do in writing whether they are verbal or not. I doubt the majority view their parents as villains but loving caregivers that are doing the best that they can in a difficult situation.

And what opinion(s) would that severely autistic child have about Autism Speaks? That’s what I would really like to know.

I doubt it’s the same opinions that adult autistics have which are quite vocal about their animosity towards that organization. I suspect that many severely autistic children would in fact like their lives to be improved as much as possible in order to integrate with society using whatever tools, methods, or drugs that are available or being developed which might make a small positive impact on their lives.

In order to do that, medical research and medical care are necessary. And guess who’s been at the forefront of pushing for that since 2005? That villainous organization called Autism Speaks.

Whether you like them or hate them, one thing that Autism Speaks successfully did for all autistics and their families is push for mandatory paid autism related healthcare services by US medical insurance companies, and that was a major lobbying expense that took a lot of their donated dollars to accomplish.

And this leads to the final contentious subject of what medical services should autistics receive whether severely autistic or not, which is the second most hated set of words or acronym by most autistics called Applied Behavior Analysis Therapy (ABA).

The history and application of ABA is not a good one, but it has transitioned for the most part from the original cruel behavior modification approach which often included physically painful methods such as electric shock therapy. A lot of autistics equate ABA therapy to dog training, and I’m usually one of them, however there is a flip-side to the concepts and application of it.

ABA no longer equates to the concept of “behavior modification” or “dog training”, and has been replaced with individualized behavior analysis that focuses on the triggers associated with antisocial behavior. This is where it gets sticky, what autistic traits are considered antisocial? A couple are at the forefront and that includes aggressive behavior and self-injury behavior.

Furthermore, ABA has morphed into a plethora of tools and methods that target the spectrum of what are considered autistic deficits, and as an example that includes severe communication problems, whether verbal or implied by actions, and helping an autistic child learn and improve their ability to communicate with a variety of tools which often includes technology such as iPads.

Like Autism Speaks, ABA is either a “love” or “hate” acronym and concept, and it’s almost an impossible challenge to change opinions on either side of that issue.

There are a lot of stories in writing by parents of severely autistic children that swear by ABA and are quite vocal about the positive aspects and results. I have read many of those stories over the last few years, but I have also read a few horror stories about ABA. Therefore I have to conclude that it all depends on who the ABA therapist is, their training and philosophy, along with their skills at working with autistic children.

As that famous phrase goes, “If you’ve met one autistic person, then you’ve met one autistic person,” and each autistic child is unique with their own gifts and their own challenges in learning to adapt to society in general. And the goal of adapting to society is leading productive lives as an adult focussing on one’s strengths and not one’s deficits.

Whether a child is autistic or not, most parents spend the first (x) years of a child’s life trying to teach their children good manners, proper social behavior, the difference between right and wrong, and a list too long to put here but all of this is done in order to help that child morph into a good person and a productive adult who makes the most of their potential no matter how limited that might be.

Most parents are not equipped nor trained to deal with little humans that do not necessarily function like the majority and this is why early intervention is so critical, so talked about in the autism world, and why therapies such as ABA continue to strive in spite of a very tainted past because there are not a lot of options for parents to choose, and this is one option that health insurance companies will pay for.

Will I start donating to Autism Speaks? Never, nor would I consider it unless I saw visible results that correspond to their new mission statement, and most importantly a radical change in their financials that demonstrates their donations are being spent on helping those ‘living with autism’ and not fat salaries and marketing.

Autism Speaks’ new mission statement is a first step, but they have a very long road ahead to garner any support from the international autism community if that is remotely feasible, and frankly I doubt it.

Unfortunately, they are still the ‘brand name’ for all things ‘autism’ just like Apple is for smartphones and tablets, and they’ve done a pretty good job marketing that blue puzzle piece that drives most of us autistics bonkers! 🙂

I hope this is truly a first step in the right direction which very loud autistic voices have been demanding for a very long time.

We will find out in the years to come…

Autism Speaks No Longer Seeking Cure

Author: David Moore Boulware

Me = [scientist, researcher, writer, coder, photographer, autistic savant, alter ego (Leonard (the friendly vegetarian lizard from an alien oval planet)), ...]

2 thoughts on “The Way I See It: “Wizard, rumor has it that Autism Speaks has finally listened to us autistics. Is that true?”

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