Don’t be Afraid of the Myths and Misconceptions about Autism.

Parents often feel sad, afraid and confused when they learn their child has an autism spectrum disorder, and It’s no wonder -- autism is often portrayed as a grim, lifelong disability, from which there is no hope of recovery.

Of course, these expectations are based on outdated information about people who grew up a generation ago, when only the most severe cases were diagnosed, and treatment was practically nonexistent. Unfortunately, parents are still given this outdated information, presented as if it’s still accurate and relevant in our present day.

These misconceptions lead to more fear, more sadness, limited expectations, and feelings of incompetence in parents about how to best help their child. As a result, some parents rely entirely on other people to work with their child and to make decisions for their child, instead of trusting their own instincts, knowledge, and abilities. Parents are their child’s best resource, yet somehow that’s not the message they’re getting from the experts.

"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

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

For the podcast on this topic: part 1 and part 2

When dealing with tantrums and difficult behaviors in autism spectrum disorders, using behavioral approaches alone can sometimes fail. What is the missing piece to managing these behaviors that a behavioral approach alone may not address?

To start, we need to look at the reasons for behavior. According to behavioral approaches, most of the behavior we see results from one of three reasons: a request, seeking attention, or a sensory reason. Let’s look deeper at these three reasons for behavior and the ways we currently handle them.

Handling a request is fairly straightforward. To put it very simply, a request is usually something externally controlled by both reinforcing appropriate requests and not reinforcing inappropriate ones, such as a tantrum.

For negative attention-seeking behaviors, we can eliminate the behavior by not giving the negative behavior attention and give attention for desired behavior – very straightforward, and again, usually externally controlled. 

The sensory reasons arise from both the external and internal events that a child experiences through the five senses, and may or may not be externally controlled. 

In all of these situations, our internal responses – our feelings and thoughts about events fire us into action. In stressful situations, the resulting “knee jerk reactions, are often difficult to manage with a purely behavioral approach for a few reasons:

1. Thoughts and feelings are often lightning-fast, internally-controlled events, therefore difficult to manage through external behavioral modifications.

2. Thoughts and feelings can’t be measured, and as a result, behavioral approaches simply don’t address them. It doesn’t mean that these things don’t exist or aren’t important. It just means that they’re left out of the equation.  

3. Behavioral approaches address the cause and consequence of  behaviors – the beginning and the end. But internal responses (ie thoughts and feelings) happen in the moments between the cause and the consequence. By not dealing with thoughts, feelings and solutions at these moments, we leave a child to figure out solutions on his or her own.

4. Children on the autism spectrum have a limited ability to adapt to new or changing situations, solve problems, compare past to present, or see possibilities. Because of this, if a child never learns how to think through a challenging situation during the emotional moments, when faced with it again, the same behavior will probably repeat itself, no matter what the consequence, or how many times they’ve been through it before.

This situation calls for tools to deal with overwhelming thoughts, feelings and strategies in the moment before the tantrum, not just consequences after.

In the book The Explosive Child , Ross Greene talks about this situation. This book applies to any disorders that have limitations in problem solving and executive thought, including all PDD’s, including Asperger’s Syndrome, PDD-NOS, and all autism spectrum disorders, ADD, ADHD, and various other developmental disabilities.

In the book, first we pick our battles carefully, and then talk through our thought process out loud. This way our children can hear us think through situations before tantrums. This also creates a memory of how they triumphed in the situation without resorting to negative behaviors.

Progress is made in small increments, but as time goes on, tantrums should decrease, and you can even start to ask your child to contribute ideas about solving problems during those emotional moments. In doing this, you help your child learn how to solve problems and become confident about handling new, changing, or challenging situations. You’ll combine the best of all worlds, to the benefit of your child.

- Sandra Sinclair, www.autismvoice.com

MP3 File

Tantrums and undesirable behavior are common problems for children on the spectrum. Why is it that sometimes behavioral strategies work, and sometimes they don't in turning these behaviors around? What is the missing piece from the behavioral approaches that, once put in place, could change the outcome for our children?- Sandra Sinclair, www.autismvoice.com

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