Monday, November 03, 2008

Autism in Adults

With reference to adult outcomes, we do know some things and we shouldn't be all that impressed . . .
It is not an overstatement to say that adaptive behavior competencies will get you through times of no academic skills better than academic skills will get you through times of no adaptive behavior competencies.

Who do you think put these remarks in his presentation The Autism Education Network's recent Collaboration in Autism Treatment conference?

If you guessed, Dr. Steven Gutstein . . .

. . . you would be . . .


This speaker did cite the 2004 Howlin study that Dr. Gustein uses as well as two I do not remember seeing (Green (2000) and Cederlund (2008)). He mentions several statistics like those spotlighted by Dr. Gutstein as well:

In a group of 20 adolescentes with Asperger syndrom, Green, et all (2000) found that despite a mean IQ of 92 only half were independent in most basic self care skills including brushing teeth, showering, etc. None were considered by their parents as capable of engaging in leisure activities.
Howlin, et all (2004) surveyed 68 adults with autism with an IQ of above 50 and found a majority (58%) were rated as having poor or very poor outcomes. With regards to employment status they found
  • 8 were competitively employed
  • 1 was self-employed earning less than a living wage
  • 14 worked in supported, sheltered or volunteer employment
  • 42 had "programs" or chores through their residential provider.
Cederlund, et all (2008) followed 70 males with Asperger Syndrome (AS) and 70 males with autism more than 5 years after their initial Dx. The results indicated that while 27% of the AS group presented with "good" outcomes, 26% had a "very restricted life, with no occupation/activity, and no friends." Outcomes were considerably worse for this with an autism diagnosis.
He came to similar conclusions as Dr. Gutstein. IQ does not predict the ability to stay employed, keep friends, and live independently. In his talks, Dr. Gutstein goes further to say that neither language nor success in school predicts employment, friendship, and independence for autism-spectrum adults. So, who is the mystery speaker? Dr. Peter Gerhardt. Unfortunately, his conclusions, I fear, will produce more of the same . . .

Before I go any further, I must be completely honest. I am not a fan of ABA; I have a personal bias against ABA. In spite of all of the "evidence" (and I am a statistics hound, having earned my bachelor's degree in mathematics and master's degree in operations research), I am not impressed.

Why? Because, as these studies point out, success in school (a static system) and high IQ (a static ability) does not address dynamic intelligence, which is required for sustained employment, relationships, and independence. ABA targets static skills (learning procedures, thinking in the box, memorizing information, reacting to a prompt in a predictable way, etc.). In fact, Dr. Gerhardt points out, "in supporting adolescents and adults, there are times where previously accepted 'prompt hierarchies' may have to be modified." His answer? Prompting a la bluetooth. Hmmm . . . I am being flippant, I know--Dr. Gerhardt's presentation is full of all kinds of ideas to make an ABA parent's heart sing. However, having seen Pamela master developmental milestones that have enabled her to learn all kinds of life skills in the past 18 months--milestones I thought impossible for autistic people, I want more than direct-prompt-driven behavior.

What I like about RDI is that direct prompting (imperative teaching) is the absolute last resort for teaching problem-solving and thinking outside of the box. RDI acknowledges that the great strength of autistic children is static learning. Pamela learned her calendar skills (knowing the day of the week given the month, day, and year) through her eye for patterns, a static ability. Rather than developing that part of the brain even more, I find it more beneficial to develop the area where she is weak: dynamic thinking. It is slower and not as exciting as ABA, but I think in the long run will pay off for us!

I am not trying to bash ABA here, but to draw some clear distinctions between the two. Remediating autism means giving the child a second chance to do over what they missed the first time around. It means looking at the typical developmental profile of a typical child and letting them try to master those missing gaps. That is why ABA looks great at first because children pick up all of these wonderful static skills very quickly and you become the miracle worker. BUT, they have no idea what to do when things change or something unexpected happens. Static is easy for them, so why spend time focusing on what comes naturally? That is why you have so many highly intelligent autistic people with degrees who cannot hold down a job.

Not only that, the parents/therapists doing ABA have to engage in a completely different manner. In ABA, you expect the child to give an immediate response--in RDI, you are told to wait up to 45 seconds to allow the child to process and think. In ABA, you give the command in the same way every time. With RDI, when the child is on a roll and feeling competent in the situation (there are no commands or prompts), you add variation for which you have no prompt or target response. If they are able to go with the flow, you keep adding variations. If they freak out, you help them recover, get them going with the flow again, and challenge with a different variation. With ABA, everything is focused on verbal communication. With RDI, you are trying to be as nonverbal as you can because that is what most of our kids missed during their infant and toddler years.

If I boiled it down to one comparison, I think an ABA child is expected to do, but an RDI child is allowed to discover.

P.S. Here's more food for thought: an article called Reaching an Autistic Teen about a school started by the father of a spectrum teenager that employs Greenspan's ideas. I like this explanation of developmental theory (which is what RDI is too) on page 4:
I begin to picture the brain metaphorically as a tangled ball of Christmas lights. When you plug it in, there are strands that light up perfectly and there are dark zones where a single burned-out bulb has caused a line to go out. If the bulb for Exchanging-Smiles-With-Mother doesn’t light up, then Empathy won't be kindled farther along the strand, or Playfulness, or Theory of Mind (the insight that other people have different thoughts from yours). The electrical current won't reach the social-skill set, the communication skills, creativity, humor or abstract thinking.
I think RDI is less-child driven and tries to balance between parents and children more. I am inspired that it is the PARENT of a spectrum child (a father, no less) who started and runs the school. Very neat!


Anonymous said...

AMEN!! I couldn't agree more... It is sooo good to see in writing what I also believe so strongly. Sometimes I get discouraged with all of those around me in the autism community thinking that teaching behavior is going to allow them to succeed later in life and truly have a quality of life that everyone deserves and wants.

poohder said...

Tammy, here is a link to Employability skills for 2000+ as written by the Conference Board of Canada. The list begins on page 2. Most items listed are DYNAMIC
skills vs Static skills. Dr. G. referenced this list a few years ago and I thought it was very eye opening. Rhonda

walking said...

Susan, I was hoping I wouldn't create WWIII.

Rhonda, thanks, I will check it out. Dr. G was going to do a webinar on this, but the computer system at the Gilbert School was NOT cooperating that day. So, he is going to reschedule.

walking said...

Poohder, here is a GREAT quote from Martin Luther that I know you will love, "However strict their orders, and however much they [coersive secular authorities] rage, they cannot force people to do more obery by word and deed; they cannot compel the heart, even if they were to tear themselves apart trying. There is truth in the saying: Thought is free. All they achieve is to force people with weak consciences to lie, to perjure themselves, saying one thing while in their hearts they believe another." (I got that from the book, Never Before in History).

Penny said...

Oh, Tammy, I love your summary at the end. It matches our experience. ABA was about getting her to DO something, RDI is allowing her to discover. Beautiful!

Niffercoo said...

This was a great entry, Tammy, and very timely for me. In fact, if you don't mind, I may print it out and keep in in my 'Words of Wisdom' notebook.

I know that I worry too frequently about academics and college. I've mentioned to you before that having my kids go to college on time (not when they are in their 20s), followed by getting 'good jobs', is the standard to which my extended family will hold me. And the studies you list and that I have read before just don't seem very promising. College doesn't equal keeping that 'good job' in a dynamic environment.

It would be great if we in the autism community could get this message out to more people. It gets frustrating when the examples of success that are held up are the ones who are still so static in their interactions, but are academically making it through in college.

I could go on and on, and maybe I will one day on my own blog, so as not to take up your space! Thanks for getting the message out there again!

Mama Skates said...

oh, how i love ur blog! sometimes, i feel like what u're blogging about is way over my head - but most of the time, i learn sooo much!

"thought is free"

"allowed to discover"

love it!

Anonymous said...

I like the Christmas lights analogy.

When "Marie" was evaluated by a neuropsych, many years ago, he really didn't address dynamic skills at all, nor did he acknowledge that her high I.Q. and verbal skills wouldn't guarantee success. I expressed a concern that things would get more difficult as Marie got older, when her book smarts wouldn't be enough. He dismissed my concern. "She'll compensate," he said. That never intuitively seemed right to me.

I used to be on a listserv with many adults with NonVerbal Learning Disability (which is basically a deficit in dynamic skills). There were many brilliant people there who'd excelled in school, earning graduate degrees, only to find they could not function in the professional world. It was heartbreaking.

Great post, Tammy!

Anonymous said...

I love the Martin Luther quote, too.

LAA and Family said...

Terrific post Tammy! I am really enjoying learning more about RDI through your posts and videos about Pamela. Not that I'm picking up any books enough, but I find I go for the RDI books I have more frequently than my ABA book these days.

walking said...

Thank you all for your kind comments. I guess people who might get offended at my ABA comments have sense enough to skip my blog! LOL!

Anonymous said...

I think RDI is not an entirely
original approach...RDI has
"stolen"ideas from R. Feuerstein
and many others....
and I think the RDI parent is
trying to transform himself
ABA is about motivating and reinforcing...)

walking said...

I spoke too soon! LOL!

In the material I have read or viewed, Dr. Gutstein has not claimed these ideas are new. He has given credit to many authors and researchers and encourages parents and professionals to read their books. Some of the authors and researchers do attend RDI conferences as guest speakers.

Dr. Gutstein also states that he is organizing the research on the development of typical children and comparing it to that of autistic children to figure out the gaps in development. His approach is to autism is both cognitive and developmental and, since Dr. Feuerstein is a cognitive psychologist, it would make sense that their methods have common ground. I even ran a search on their last names and found no websites making your claim.

If we apply the same reasoning to ABA, one could state that Dr. Lovaas stole ideas from Dr. Skinner and today's generation of ABA experts steal from each other or from Lovaas. I prefer not to follow that path of reasoning because I believe it is a genetic fallacy. Even if Dr. Gustein stole these ideas--which I doubt simply because he has credited so many others, the act of stealing does not render the ideas themselves wrong, just the method of obtaining them.

I think that the great thing about living in a free country is that I can choose RDI and other parents can choose ABA. I think RDI works because autistic children do have social brains like the rest of us and, once they begin to think in dynamic ways, their brains start to benefit from the naturally occurring reinforcement that comes from learning through guided participation. I do not prefer ABA because the techniques focus on static skills, introduce unnatural reinforcements, and rob children of the chance to think.

But, that is my opinion and I enjoyed having a spirited debate with you!