"That doesn't work." How many times have we heard this statement in terms of therapies for autism? Is it fact or opinion, depending on who is saying it? The answer may surprise you.

In our present academic environment, and actually in a lot of areas of life, if someone isn't up on something, they're usually down on it.

That means if someone doesn't know that much about something - ie, if it's not within the area of their expertise, they're often critical of it, especially if they don't know anything about it! Ludicrous? Yes. But often true.

I attended an autism conference a couple of months ago, where I sat through a session called "Fads in Autism".

The theme of the session was that ABA (Applied Behavioral Analysis) was the only therapy that "works" in autism - that everything else was the scheme of some huckster, trying to make a quick buck, at the expense of parents hopes, dreams and pocketbooks. The projection screen listed just about every therapy for autism ever known to mankind, all deemed the work of con artists or well-meaning people who didn't know what they were doing. 

And there was our expert, telling us they all didn't work. The true cons were lumped into the list with some helpful and valuable therapies and approaches. It was a terrible shame for parents that were new to the world of autism therapy.

Basically any therapy that didn't have their research completed- was on the list, which is basically just about everything but ABA. It was interesting that speech therapy and special education were notoriously absent from the list.--both non-data-taking strategies. I can only guess that was because there were special educators and speech therapists present.

So what happened? Everyone in the room seemed to agree, as evidenced by a sea of bobbing heads. Parents were mesmerized, happy and thankful that this man saved them from going into the abyss of choosing the wrong intervention for their child. I've never been so unnerved. I wondered if we'd all have to drink the pink koolaid next.  

When a person presents themself as one who backs up what they say with research, everyone in the room will assume the opinion is factually based, or may not even realize it's an opinion at all. After all, a behavior analyst would never say anything that wasn't backed up with research, right?

Well, as it turns out, at least with this guy, there was no attempt to separate fact from opinion.

I remember when I was new to this whole process. When a behavior analyst said that something didn't work, I assumed that they had research and data to back it up. I believed that ABA was the only effective autism intervention and that everything else was either crap, ineffective, or certainly very secondary to the effectiveness of ABA, because that's what I was told. It wasn't until my child experienced benefits from other interventions that I knew a different truth.  Read more...

Sandra Sinclair, www.autismvoice.com

This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 2.5 License

Now that there's a new feature that allows me to check comments and trackbacks before posting, I can allow comments and trackbacks again on Autismvoice.

I had some very nasty comments and trackback spam from porno sites recently, and had to stop all posting on the blog for awhile, to prevent our readers from having to read that.

Now that we have this feature, please feel free to post and trackback again. Your post will go up usually within 48 hours or so, as soon as I have an opportunity to review it.  

Sandra Sinclair, www.autismvoice.com

This is a great series of articles at Wrightslaw about the common mistakes parents, advocates, evaluators, and school districts make in advocating and creating a plan for our children. This link leads to parents' mistakes, and if you scroll down that page, you'll see links to the other articles. Very helpful! This is intended for US residents, since it's based on US laws; however, there are overall themes of wisdom that could be applied throughout the world in advocating for our children's educational and therapeutic needs:

http://www.fetaweb.com/02/mistakes.parents.crabtree.htm 

Sandra Sinclair

www.autismvoice.com

This is an incredible article by Ellen Notbohm about some of the misconceptions about autism and what we can do about them - written from the child's point of view. It's an eye-opener. She also has a similar article for teachers that I will post soon. - Sandra Sinclair, www.autismvoice.com

TEN THINGS EVERY CHILD

WITH AUTISM WISHES YOU KNEW

by Ellen Notbohm

Some days it seems the only predictable thing about it is the unpredictability.  The only consistent attribute -- the inconsistency There is little argument on any level but that autism is baffling, even to those who spend their lives around it.  The child who lives with autism may look “normal” but his behavior can be perplexing and downright difficult.

Autism was once thought an “incurable” disorder, but that notion is crumbling in the face knowledge and understanding that is increasing even as you read this.  Every day, individuals with autism are showing us that they can overcome, compensate for and otherwise manage many of autism’s most challenging characteristics.  Equipping those around our children with simple understanding of autism’s most basic elements has a tremendous impact on their ability to journey towards productive, independent adulthood.

Autism is an extremely complex disorder but for purposes of this one article, we can distill its myriad characteristics into four fundamental areas: sensory processing challenges, speech/language delays and impairments, the elusive social interaction skills and whole child/self-esteem issues.  And though these four elements may be common to many children, keep front-of-mind the fact that autism is a spectrum disorder: no two (or ten or twenty) children with autism will be completely alike.  Every child will be at a different point on the spectrum.  And, just as importantly – every parent, teacher and caregiver will be at a different point on the spectrum. Child or adult, each will have a unique set of needs.

Here are ten things every child with autism wishes you knew:

1.  I am first and foremost a child.  I have autism.  I am not primarily “autistic.”  My autism is only one aspect of my total character.  It does not define me as a person.  Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)?  Those may be things that I see first when I meet you, but they are not necessarily what you are all about.

As an adult, you have some control over how you define yourself.  If you want to single out a single characteristic, you can make that known.  As a child, I am still unfolding.  Neither you nor I yet know what I may be capable of.  Defining me by one characteristic runs the danger of setting up an expectation that may be too low.  And if I get a sense that you don’t think I “can do it,”  my natural response will be:  Why try?

2.  My sensory perceptions are disordered.  Sensory integration may be the most difficult aspect of autism to understand, but it is arguably the most critical.  It his means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me.  The very environment in which I have to live often seems hostile.  I may appear withdrawn or belligerent to you but I am really just trying to defend myself.  Here is why a “simple” trip to the grocery store may be hell for me:

My hearing may be hyper-acute.  Dozens of people are talking at once.  The loudspeaker booms today’s special.  Musak whines from the sound system.  Cash registers beep and cough, a coffee grinder is chugging.  The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums.  My brain can’t filter all the input and I’m in overload!

My sense of smell may be highly sensitive.  The fish at the meat counter isn’t quite fresh, the guy standing next to us hasn’t showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they’re mopping up pickles on aisle 3 with ammonia….I can’t sort it all out.  I am dangerously nauseated.

Because I am visually oriented (see more on this below), this may be my first sense to become overstimulated.  The fluorescent light is not only too bright, it buzzes and hums.  The room seems to pulsate and it hurts my eyes. The pulsating light bounces off everything and distorts what I am seeing -- the space seems to be constantly changing.  There’s glare from windows, too many items for me to be able to focus (I may compensate with "tunnel vision"), moving fans on the ceiling, so many bodies in constant motion.  All this affects my vestibular and proprioceptive senses, and now I can’t even tell where my body is in space.

3.  Please remember to distinguish between won’t (I choose not to) and can’t (I am not able to).