Struggling. . .

Although I’m learning a lot from teaching my kids at home, I continue to try and find suitable programs for them, whether as an educational supplement or for socializing with and meeting other kids. I keep thinking there is a little gem out there that I’ve yet to uncover where all the progressive parents of kids with autism send their kids to receive an enlightened and compassionate education. This whole process has brought up so many issues that I haven’t had to think about in years. I’m conflicted and frankly, depressed at the autism ‘landscape’ here in Florida and probably most of the country.

I’ve recently been in contact with a program my kids attended when they were first diagnosed in 2001 called Learning on the Log. I credit that program with helping to shape my views of my kids’ abilities and my own pragmatic approach which does not seek to “cure” autism but rather to help my boys be happy, productive, and capable of giving and receiving friendship and love. I found a fantastic partner in Vancouver with Friend 2 Friend Social Learning Society, which is dedicated to helping children on the autism spectrum learn to play and make friends. I know this won’t be popular with most parents of children with autism that I know, but I think we sometimes do more harm than good when we put all our effort into trying to make our children “normal”.

When my son Robert was first diagnosed in 2001, all my research led to a book by Catherine Maurice called “Let Me Hear Your Voice”. Maurice, a PhD, describes the intensive behavioral intervention that brought about her children’s “recovery” from autism. Here, a quote from the review at Amazon.com:

A vivid and uplifting story of how a family pulled not one but two children out of the torments of autism–and into a normal life.

Maurice preaches the gospel of ABA (Applied Behavior Analysis) as espoused by Dr. Ivar Lovaas. ABA is pretty much the only game in town here in Florida, and in much of the US. Parents have sued school districts and insurance companies to secure funding for the significant costs of therapy. For a nuts-and-bolts description of ABA, you can see this Wiki entry. And if you’d like to see what Maurice thinks of interventions other than ABA, you can see her letter posted here in response to a Time Magazine article about ‘Floortime’, a therapeutic intervention espoused by Dr. Stanley Greenspan.

Our family chose the ‘DIR/Floortime’ route. Floortime doesn’t have it’s own Wiki entry but you can learn more about it at Dr. Greenspan’s website here. 

The issue I have right now is that ABA seems to be the only option. Parents and scientists have successfully painted other interventions as “not scientifically based” and therefore not credible or eligible for funding. The reason ABA is so “scientific” is that therapists record meticulous data on how many times their students successfully complete a task (anything from learning to label objects to establishing eye contact to requesting desired items). One of the problems I have with ABA is that its’ most loyal adherents are blinded to the efficacy of other methods of reaching kids with autism. Not only that, but ABA seeks to make kids fit a mold that we as a society find acceptable. How? By forcing the children to make eye contact, even though it is quite difficult and even painful for many. By extinguishing self-stimulatory behaviors (stims) like hand-flapping or pacing. You may be thinking, that’s wonderful! If the kid is flapping wildly, other people will look at him funny and he won’t be socially accepted. But, as the Friend 2 Friend program puts it so beautifully, stims serve a purpose for people with autism and we all have stims. (Mine is hair twirling and leg-bouncing, Robert’s is flapping, John’s is pacing, Dad has several and Joe’s is messing with his fingernails.) What if you were sitting in traffic, late for work, and needed to calm yourself down? Some people might twirl their hair or bite their fingernails or yell at other drivers or rock back and forth. What if someone wouldn’t let you?

This stuff is important because it dictates the way we educate people with autism. Would you want your kid to go to school, be sat at a table and not allowed to move until he completed certain tasks? Before you say that’s what all kids are supposed to do, I’ll tell you that many kids with autism have sensory-processing issues that can make sitting still excruciating. Practitioners of ABA don’t even acknowledge the sensory-processing differences and refer to sensory integration therapy as “quack science” or refuse to address it altogether. Or would you want your kid to be rewarded with a Cheetoh every time he did something right and nothing when he did something wrong? (Many therapists use edible ‘reinforcers’ for kids with autism. I won’t allow it with my son.)

All this matters because the only ‘autism programs’ here use ABA. Exclusively. And I don’t believe in it, I’m sorry. I believe some of the principles of ABA can be used successfully to help many children with autism, but it is not a “cure” and it is not the only intervention available to us to reach and teach our kids. And the next time someone shoves the “only scientifically-proven, peer-reviewed autism intervention” card down my throat, I’ll be sure to remind them that Lovaas’ data included years when he utilized ’subversives’ on his subjects. To his credit (as well as researchers who work with him), he has eliminated the use of such subversives today. But the data frequently quoted by the ABA-only camp includes a time when those subversives were used. If you have the stomach, you can read this 1974 interview in Psychology Today with Lovaas.

I’m not feeling very peaceful but I hope I will find it. And I hope you will too.