Skip to main content

Autism Therapies and Research

Someone asked me if I oppose all behavioral therapy for children with autism. No, I don't. In fact, I support more research so we can better refine whatever treatments and supports do work for people with autism. I just despise, truly despise, some fringe groups and dangerous ideas about the nature of autism.

This week, a social work student from New York brought to my attention a teacher who cited Autism and Childhood Psychosis by Frances Tustin. The book, first published in the early 1970s, embraces the "narcissistic" view of autism. The book calls for therapies that, sadly, I've witnessed within the last few years: holding a child against her will, for example. The book also links emotionally detached mothers to autism. So, I will continue to remind people that such out-dated nonsense should be challenged. Thankfully, I believe most people will recognize Tustin's text is more a historical artifact than valid information on autism.

I wasn't familiar with the Tustin book, I admit. Apparently, it was reissued in 1995 and some very old-fashioned instructors and practitioners still embrace the theories mentioned. The text seems "Freudian" to me, for lack of a better description. If anyone knows the text, correct me if I'm mistaken.

It's no secret that I dislike people misusing the term "ABA" (Applied Behavioral Analysis, which is not a single therapy technically) and the practices that some people engage in under the guise of "therapy" for children with autism. Fringe groups like NARTH and some people still attached to out-dated notions of mental health use generally abandoned, discredited methods that are not endorsed by the APA or any respected organization. I definitely have no respect for the Lovaas name -- and it doesn't take a lot of research to find out why someone dedicated to equal rights for all people would be troubled by the Lovaas history. (Read the 1974 Lovaas text, Perspectives in Behaviour Modification with Deviant Children for a sad history lesson.)

However, my disgust with a fringe of therapists and "practitioners" respected by almost no one in academia or the research community should not be taken as opposition to any well-designed and monitored research into early intervention therapies for autism.

My mother does not have a college degree and was dealing with my disabilities years before Prof. Lovaas' research at UCLA. Yet, anyone familiar with her efforts would call them "early intervention" and a form of observation-based support. I have no doubt that my mother, working with my physical and neurological development from birth, played a major role in my later success in life. I know, with complete certainty, that my parents being actively engaged in my early years ensured I reached my full potential.

I do not and cannot agree with some "neurodiversity" activists that we should not research "ABA" therapies. First, this assumes all ABA is still dependent on the out-dated and discredited early Lovaas work. Second, we cannot ignore the fact that the brain is more adaptable at early ages.

We know children do learn languages easier than adults, and I don't believe it is a stretch to theorize that young minds are more likely to respond to any behavioral therapies.

I'm not convinced that ABA therapies, sensory integration therapies, or many other therapies for autism have a sufficiently high rate of success. I also believe some therapies are so discredited that they should be abandoned entirely, as research has found no credible evidence of success. Facilitated communication falls into the category of "Abandon it, already!"

I'm definitely opinionated on treatments and therapies. But I also want much more research. I don't believe the evidence for "social stories" is compelling, for example, but I'm more than willing to have research continue. Maybe we can determine when a therapy with a low success rate works and why. If something is working 50 to 60 percent of the time, is the therapy working or is this a side effect of interactions? We should explore such questions.

I'm never going to celebrate the Lovaas name. I want people to know what horrible biases Lovaas represents, especially his anti-homosexuality theories. I don't want people to forget that history. Reputable researchers, clinicians, and professional organizations must work to end discredited practices as quickly and completely as possible. Groups like NARTH are small, pretenders to legitimacy.

At the same time, if we dump all research into everything with a checkered past, not much research will be conducted at all. We cannot stop all behavioral therapy research. It simply isn't logical to stop asking how we can help the most impaired individuals.

Comments

  1. I wonder what part I had in my son's "abilities". Part of ABA was a book that had a checklist of words, non-nouns that could be presented kinesthetically or visually. I worked 2 hours a day for about a year, instead of paying $60,000 a year for ABA. It was the same book that a psyschologist might have used (It was Catherine Maurice's book. She was a proponent of Lovaas who said her children recovered).

    Presentation of language visually/kinesthetically...no punishment or reward for "look at me", the behavioral component wasn't a part of my "therapy". Instead of punishment, I thought "What do I need to SHOW Ben in order to help him understand??" Words were so much jibberish to him. I will always wonder...and I hope and pray for my Ben's success!!

    ReplyDelete
  2. May we all hope the success of every child, no matter his or her challenges in life. The best to your son.

    ReplyDelete
  3. Sorry to ask but which Catherine Maurice's book? I have found two on Amazon: Behavioural intervention and Let me hear your voice. I'm guessing it's the latter, but I just wanted to be sure.

    There are barely any autism services in my area, so it really feels like I've been banging my head against a brick wall these last 2.5 years (since I suspected my son might have it). This post has been really informative and I enjoyed reading it, thank you!

    ReplyDelete
  4. I would also check with Future Horizons. They offer some of the better materials, though we might always find something to update.

    The FH Autism site is: http://www.fhautism.com/

    Future Horizons tends to promote its connection to Dr. Grandin a lot, but I can't blame them for using her as their lead expert.

    ReplyDelete
  5. A couple of small and inconsequential corrections, if I may:

    "most people know Tustin's text as more historical artifact than valid information on autism."

    "the practices that some people engage in under the guise of "therapy" for children with autism."

    See? Really microscopic errors, and I can't help but notice. No disagreement on facts or opinions.

    ReplyDelete
  6. CS, are you aware of the common practice of "packing" done in France? Parts of the western world still embrace the psychoanalytic view of autism like Tustin did.

    http://neuroskeptic.blogspot.com/2011/01/packing-autistic-kids-french-scandal.html

    ReplyDelete
  7. Yes, I wrote about French theories on autism in my dissertation. The texts I located were published within the last five years. They were disturbing, but it also reflects a very non-medical perspective of mental health.

    The French diagnostic manuals are an interesting read.

    ReplyDelete
  8. Hi There,

    I started my own blog to help my sister out who's little boy was diagnosed with autism about a week ago. It will be fantastic if you guys can contribute to the blog and help her understand autism better.

    It is a bit over whelming at the moment and all advice and support will be appreciated!

    Many Thanks, V

    http://vanntastic.weebly.com/1/post/2011/02/first-post.html#comments

    ReplyDelete
  9. Thank you for sharing you insight on the topic of Autism Research. Hopefully, the constant drive to formulate and deploy new treatments and therapies will allow the most impaired individuals to receive the help they need. Thanks much.

    ReplyDelete
  10. I believe we must continue research towards more effective therapies for those families and individuals living with autism. That means we must also reject those approaches that have been discredited so we can move ahead without the baggage of the past.

    We cannot stop trying to find what does work to improve lives, but that will mean some conflicts are impossible to avoid. Even scientists argue over the methodologies of research projects. The key is to "do no harm" when trying to assist anyone.

    ReplyDelete
  11. This comment has been removed by the author.

    ReplyDelete

Post a Comment

Comments violating the policies of this blog will not be approved for posting. Language and content should be appropriate for all readers and maintain a polite tone. Thank you.

Popular posts from this blog

Autism, Asperger's, and IQ

"Aren't people with Asperger's more likely to be geniuses? Isn't genius related to autism?"

A university student asked this in a course I am teaching. The class discussion was covering neurological differences, free will, and the nature versus nurture debate. The textbook for the course includes sidebars on the brain and behavior throughout chapters on ethics and morality. This student was asking a question reflecting media portrayals of autism spectrum disorders, social skills difficulties, and genius.

I did not address this question from a personal perspective in class, but I have when speaking to groups of parents, educators, and caregivers. Some of the reasons these questions arise, as mentioned above, are media portrayals and news coverage of autism. Examples include:
Television shows with gifted characters either identified with or assumed to have autistic traits: Alphas, Big Bang Theory, Bones, Rizzoli and Isles, Touch, and others. Some would include She…

Listen… and Help Others Hear

We lack diversity in the autism community.

Think about what you see, online and in the media. I see upper-middle class parents, able to afford iPads and tutors and official diagnoses. I see parents who have the resources to fight for IEPs and physical accommodations.

I see self-advocacy leadership that has been fortunate (and hard working, certainly) to attend universities, travel the nation (or even internationally), and have forums that reach thousands.

What I don't see? Most of our actual community. The real community that represents autism's downsides. The marginalized communities, ignored and excluded from our boards, our commissions, our business networks.

How did my lower-income parents, without college educations, give me a chance to be more? How did they fight the odds? They did, and now I am in a position of privilege. But I don't seem to be making much of a difference.

Demand that your charities seek out the broadest possible array of advisers and board members.…

Life Updates: The MFA Sprint

Life is okay, if more than a little hectic at the end of this first month.

With one month down, I'm 11 months away from my MFA in Film and Digital Technology. Though things might happen and things do go wrong, so far I'm on schedule and things are going well —— though I'm exhausted and working harder than I did for any other degree. Because the MFA requires projects every week, this isn't as easy to schedule as writing. Even researching a paper can be done from the comfort of home, at any hour.

You cannot make movies by yourself, at any time of day. It doesn't work that way. Filming takes time, and often requires a team of people. It's not comparable to working alone on a degree in writing or rhetoric.

The team-based nature of film is exhausting for me, but I enjoy the results. I also like the practical nature of the skills being taught. You either learn how to adjust ISO, f/Stop, shutter speed, and other variables or you don't. You can have theories …