“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 endured 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. What a terrible shame for parents 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.
My son did benefit tremendously from ABA. But he also benefitted tremendously from Relationship Development Intervention, Verbal Behavior ( a form of ABA), Speech, OT, PT, and Special Education. None of these are peer-reviewed to the satisfaction of the man who lead the “fads” workshop. But all have helped my son. Do I care that the research isn't in yet on these? No, I don't, because I've seen the results myself, however “anecdotal”, or individual they may be.
Let's see things for what they actually are. Are there useless therapies out there – produced by opportunistic hucksters just waiting to vacuum the cash out of our wallets? Of course there are. As parents, we have to determine what's effective and what's not.
In the meantime, our children are getting older every day. If we wait until every peer-reviewed journal ok's every considered treatment, our children will probably reach adulthood before another treatment finishes research. Because of this time delay, we must weigh and discern which interventions are effective and appropriate for each individual child. It's a very personal decision, balanced on knowledge, discernment and discretion.
What the phrases “works” and “doesn't work” actually mean:
Getting back to what works and what doesn't — I used to assume that the words “works” or “doesn't work” was probably something to do with effectiveness to help a child recover from autism. I was wrong. What “works” means: the therapy produces behavioral change, according to peer reviewed journals.
(and as a side note – what kind of behavioral change? How much are we actually saying and not saying with that very vague statement? )
If there's not enough peer-reviewed literature on something, it's customary and acceptable to say ”it doesn't work” . This means that every therapy in it's infancy, including ABA in its early days, ”didn't work”.
Let's think about this – There's not enough peer-reviewed research on how many people can walk or talk. It's purely anecdotal evidence at this point - no research, no peer-review. According to this line of logic, walking and talking isn't valid or real. Parenting “doesn't work” to effect behavioral change in children. Teachers can't teach new things. Nothing works unless you've thoroughly researched and peer-reviewed it. You see how ridiculous this can get? How much does this mirror what's happening in the real world, and how can any new idea survive in this environment?
At it's root “Doesn't work” usually means that either the research on the method is still in process, or the research to date is flawed, or that there is no research at all as yet. It has nothing do do with whether the therapy is actually effective .
This would be a more truthful statement: “While things look encouraging, doubtful, etc, we don't have enough research to know the true effectiveness, of that treatment as yet”. Or “I don't know anything about that therapy and cannot comment.”
So, ladies and gents, the next time you hear an “expert” say something “doesn't work”, ask them what evidence they have that it doesn't work. If they say something like “there is no evidence that the therapy can produce behavioral change”, you know what it really means. (see the paragraph above.
–Sandra Sinclair, www.autismvoice.com
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