Monday, September 1, 2008

Effie Linares, Lovaas success story?

A recent article appeared in the Modesto Bee talking about an 11-year-old boy named Effie Linares who has been given as yet another anecdotal example of ABA's efficacy as an autism intervention. The boy is shown in the article smiling with three of his good friends. A seemingly happy boy untouched by the misery of autism that affects children in many instances causing suffering. The article talks about how he is mainstreamed in a fifth grade class in a regular school.
But is this really a success story? The article does not really give a clear before and after picture of the boy's functioning level, other than talking about how at one time he went ballistic when other people touched his Disney videos which at age 11 he no longer does. But what proof is there that natural maturity just caused him to outgrow this behavior and there was no casual relationship between the 40 hour per week Lovaas treatment and an end to this behavior? Also, the article states that he was mainstreamed since the age of 5. It is possible he was always quite high functioning relative to other autistic children. We can't really tell anything from the article.

Lovaas claimed in 1987 that nearly half of his best outcome subjects in the experimental group had completely normal functioning, in other words, no one would possibly know that they were autistic or had ever been autistic. Is this the case for Effie? The answer would appear to be no from a read of the article. He still has a shadow that aides him in his class so the mainstreaming is not 100% and does not jibe with the Lovaas best outcome subjects who had no aides or shadows. Effie's father also has to work the night shift in order to volunteer in the school to help out his son. To me, this does not sound like normal functioning or a complete success story. Effie's teacher also states that he says and does things that show he is different to the other kids, so it would seem that this boy is not indistinguishable from his peers. The article neglects to talk about his academic performance in relation to the other children in his class.

Most pertinent of all, what will happen when Effie becomes an adult? Will he be able to hold down a job, date women? As an autistic adult who by most standards is very high functioning, I have had no success in finding a girlfriend and though I worked sporadically for nearly 28 years, I finally gave up the ghost it was so difficult and I had such a hard time in the work place. I have written in the past about the lack of acknowledgement of the existence of autistic adults and how we are not Peter Pans. Someday we will grow up and have all of the issues of adulthood to contend with, just like Neurotypical persons. Of course no one is thinking of what might happen to Effie and other success stories when they become adults. No adult outcomes, have ever been published in the peer reviewed literature of autistic children who have undergone ABA. The informal presentations at conferences, while seemingly a shoddy standard of science, have been used to claim successful adult outcomes and provide cost-benefit analyses of ABA as a treatment.

Even as far as anecdotal success of ABA as an autism treatment, the oldest success story that I am aware of is that of Drew Crowder written about in the book Autism from Tragedy to Triumph. He is in college when we last hear about Drew. I have yet to hear of any adult success stories even though the children in the 1987 study are now probably about 40, some possibly older.

The playwright Bertolt Brecht said that those who laugh have not been told the terrible news. Though this is something that parents of autistic children don't like to think about, the the stark reality is there.


Unknown said...

It is anecdotal evidence which by its nature is limited and at the lowest wrung of evidence based standards of evidence. But the facts still remain the boy is doing well and contrary to anti-ABA ideology does not appear to have been harmed by exposure to ABA.

ABA effectiveness is supported by studies and responsible professional reviews of those studies.

Anonymous said...
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Anonymous said...

I believe the boy benefited from ABA, but he may need some pragmatic training/language therapy (brain re-wiring and coping strategies through therapeutic training) in order to develop his potential even further.

When the boy grows older, he may suffer from other difficulties as those on the autistic spectrum typically lack executive functioning, have poor ability to generalize and connect things in conversation when listening to and recalling facts and other important information, poor attention span, difficulty with driving directions, impairment in the ability to understand and/or use language in conversations through the whole picture- not the details, recognizing and recalling events in a room setting someone on the spectrum happened to walk by, for instance, and not picking up the cue on knowing what someone means when he/she comments about it, even though the ASD individual really did see the change in the room (such as new carpetting) earlier which isn't much different from someone who didn't recognize or open his/her mouth when someone just got a new haircut, even though there was a slight gut feeling that individual really did get a haircut-

-like who would want to live with that kind of brain glitch? Only Neurodiversity and others on the spectrum who don't believe they need a cure, but this is because they live with glitches all their lives and don't know how to cope with life, so they hang out online, at support groups and at conferences as well as asking to meet others at school believing they're so awesome like themselves when they're living with the same glitches, only they sense it in their subconscience so they're in denial about autism being a disability.

The list goes on and on.

Anybody on the autistic spectrum involved with ND either needs this kind of help, or they grew up SO high-functioning to believe others on the spectrum can be like them. Then again, some people involved with ND aren't even autistic!

I already showed Jonathan the web site involving the training program I'm in, but here's the link for you and others to see what it's all about. Who knows? Maybe I'll get some people to try what I'm doing in their local areas if they read my comment and concur to my advice.

The only thing I must warn those on the spectrum and for parents who are interested in placing their child in a similar program is the insurance. They need to be sure the insurance plan they're covered on meets the qualifications (i.e. age limit and whether the client is a full-time student) for the client.

In the future, ABA and other speech therapy programs will become obsolete. They were the best programs at one time and still are, but there wasn't as much research and knowledge about autism as there is today. In future generations, the program I'm in may become somewhat obsolete, but it's a heck lot better for someone like me who only had speech therapy that was intended for the use of developmentally disabled children because I was diagnosed with PDD rather than autistic disorder in the late 1980's.

Marius Filip said...

"Indistinguishable from neurotypicals" is highly subjective since it encompasses things in the eye of the beholder, not found in standardized tests.

Yet, from what can be measurable, ABA does work. Better on some, worse in others - nobody knows really why, I suspect it has to do with the inner workings of an individual's brain.

Mrs. Koegel, a respected voice in the field, said that she's seen hundreds of "recovered" kids but only 2 or 3 "indistinguishable" ones. So, fighting for "indistinguishability" is pipe-dreaming at best.

So, in my opinion, the goal of ABA is not to make the child "indistinguishable from peers", but to make him functional enough to be able to live in this world - independently or with a reasonable amount of help.

And from what I can see with my son, ABA is not a fluff - if you have realistic expectations.

Unknown said...

Ruffin, now 27, is a child whom Dr. Rimland helped back in 1994-1996 by referral to Dr. Doreen Granpeesheh of CARD.

He's a 4th year PhD candidate in Robotics at University of California, San Diego, now with a Masters from Georgia Tech. No student loan debt--all paid the day the graduated with money earned from summer internships for Cummins, Texas Instruments, Carnegie-Mellon.

I am here in San Diego with Ruffin until the end of June, writing a memoir of his "special education."

I would love to be in touch with those of you who are supporting ABA therapy.

Warmest thanks,

Mary Jane White