Thursday, April 12, 2007

Autism awareness -- learning to share

The first person with autism I met was three years old. I was hired to help with his ABA (applied behavior analysis) therapy. The goal was 40 hours a week, and like Catherine Maurice in her book "Let Me Hear Your Voice" (which, by the way, I was given a copy of) we were to rescue this boy. On good days I saw it as a chance for him to learn in a way that made sense to him and I saw the joy he got out of being successful. On bad days I viewed it as an attempt to beat the autism out of him before he reached the magic age of 5.

I've met many more people with autism since then (and retrospectively diagnosed an old college boyfriend with Asperger's.). Currently, I'm full time in home waiver staff for S., a 14 year old with severe autism. His mom went the ABA route when he was little and I thank her for it all the time. At the very least, he listens, he knows what "stop" means, he knows there are people in his world, and he is a very loving and affectionate boy. He follows directions, he unloads the dishwasher, he can hold himself together when he needs to. He's non-verbal and probably one of the most autistic people I know. He's a joy. No, he wasn't cured, but we're realizing he wasn't broken. He was given therapy and education that targeted his disability and it shows. He is very happy (except when he can't listen to Shakira or Dean Martin).

Currently, we're doing SONRise with him. I have been enjoying playing with him. I purposely try to forget everything about what I'm supposed to be doing, even the SONrise instructions, and sit and parallel play with him. He twirls things. I sit beside him, twirl things, build things, offer him my Lego's and kentix (sp?) for him to twirl. I sometimes imitate his sounds, I talk, I sing.
He usually kicks me out of the room when I start singing. Everyone's a critic!

The autism organizations are impressive. When S was diagnosed, the incidence of autism was thought to be 1 in 10,000. Now it's estimated at 1 and 166. This is an epidemic. This is a social force. And god bless the parents for getting so many things passed -- the Combating Autism Act, the ABA centers, insurance that will pay for ABA and other autism therapies.

But, it's time to use good social skills and think about sharing. ABA started out as a treatment for autism and other developmental disabilities. I hear over and over about kids who can't get into ABA programs because they have a different disability. Worse, I hear of children with autism diagnoses that might actually have another condition, like Angelman Syndrome, or another genetic condition. The parents don't test because they will lose services. The reason for testing is not to limit your child, but to have more information on health and therapy issues.

Kids with cerebral palsy and Down Syndrome and other disabilities didn't just disappear when the autism epidemic started. In fact, parents of kids with developmental disabilities and people with developmental disabilities themselves built the ARC, United Cerebral Palsy, and other advocacy groups. They passed the ADA, the IDEA, waiver. They led the movement out of institutions and into the community. When the autism epidemic happened, there were networks already there for parents to build on.

Autism is a complex phenomenon. Both of the boys I have mentioned here were typical children until their vaccinations. Both spiked fevers, were sick for days, and never recovered.

I also am very interested in the genetic aspects of autism. I am currently studying Angelman Syndrome, and there is a 15th chromosome link in both conditions. (almost always in Angelman except in 10%-15% of cases where none can be found, but is suspected. In autism, there are many genes implicated, but a small duplication of the mother's 15 chromosome is linked to some types of autism). There are not a lot of genetic tests done in autism -- most diagnoses are based on clinical observations. But those genetic tests, if they were routine, would help us understand so much. The Angelman community is well-versed in genetics because doctors consider it primarily diagnosed by genetics (although experts say that the clinical diagnosis should be first). Do kids with Fragile X-linked autistic symptoms behave differently than kids with duplication of a small bit of chromosome 15? The parents could be essential here in helping us understand this, the way that parents of kids with AS are essential in helping us know whether kids with deletion positive AS are different than kids with uniparental disomy Angelman Syndrome.

But I see great pressure within the autism community to NOT test. What if another syndrome is discovered? A child loses ABA intervention. What if those babies that were sickened by the vaccinations also have a genetic component to their autisms? Does that mean that there's no case against the vaccines? I don't believe that's valid -- if you are mercury poisoned, you're mercury poisoned. But I know how juries and courts and the media will play it -- that genes are destiny and that the vaccinations couldn't have changed anything. I understand the pressure, I really do. But, wouldn't you want to know if your child had a genetic form of autism?

I understand their positions, I really do. I love the boy I work with. I love that because of autism networks, he gets the intervention he needs. I love that so many people are being helped by ABA and other programs. I love the fact that when he was a toddler, his mom sat in the doctor's office with him, wrapped her legs around him, and refused to leave until the doctor wrote her a referral to the specialist. That's the kind of thinking and action that has got the autism community this far.

But, well, share!!!!!! Do I have to write a social story on this? ,Parents and autism organisations: Your kid might recover. That would be great. But your kid will still be a citizen of the world that includes people with and without developmental disabilities. Everyone in this world deserves an education targeted toward their skills, regardless of diagnosis. Those kids with cerebral palsy and Down Syndrome and Angelman Syndrome and Williams Syndrome and Prader-Willi and every other syndrome I can name and many more I can't -- are going to grow up and be your kid's neighbors. It does not serve any of us to have them undereducated.

We can compete for limited services, or we can join together and demand MORE services. It might be time for this movement to consider where it wants to go and who they are willing to sacrifice to get there.

As an incidental, the book that started this all, The ME Book: Teaching Developmentally Disabled Children, by Lovaas, was a description of interventions on children with all sorts of diagnoses -- not just autism.


Tami said...

I'm curious to why you favor the ABA method over DIR.

Lesley said...

At first I didn't know what DIR was. I looked it up.

I should be more specific. I don't prefer ABA -- I was hired as an implimenter with no experience in it (or anything else) at all.

It was not a great experience for me. I felt I was forcibly un-autisming this kid for the wrong reasons.

When it's done with love and with the idea that we're teaching a child to learn, the same way we teach any child to learn, I am all for it. But I hate the thought of beating the disability out of someone, and that's what it can turn into sometimes.

DIR wasn't really a thing 6 or 7 years ago when I began this. I've read some of Greenspan's stuff since then, but I have never been part of a DIR intervention program. I would like to see it.

Tami said...

Lesley- go to

It's what our grad school believes in. They're actually fervently against ABA. They believe that floortime therapy actually helps them learn socially a lot better than what ABA can do.
And Greenspan and Wieder give GREAT detailed examples of how to do floortime therapy- it's great.

Lesley said...

Comment did show up, but there is a delay, because I approve or reject comments. Blogger can get more nasty than lj.

I have mixed feelings about all programs. I enjoy Floortime, what I've read of it. It sounds like a cross between ABA and sonrise.

ABA is valuable in a certain way, particularly in the actual functional behavioral assessments, the data collection, etc. And some children seem to find comfort in the routine of it. But I'm not so much a fan of discrete trials over and over for 40 hours a week. I left with a horrible feeling.

I think ABA can be modified and what most people are talking about when they say ABA -- the discrete trials and route learning -- are but a single, abused part.

Wow. Never in my life would I have thought I would have defended it.

I guess I believe that any program can be destructive or good -- it depends on the implimentation and purpose behind it.

I'd love to see Floortime in action.

Anonymous said...

Good evening!
I have a 7 y.o.girl who is Asperger's, I believe (she talks a lot!).

Her behavior is the major problem. Few things make her interested and motivated, so she has someone to help at school.

She is beginning GF/CF diet and minerals support. These procedures are increasing in Brazil.

Now I want to try ABA or SONRISE.
What is your opinion?

Rio de Janeiro - Brazil

Lesley said...

Wow. Nice to meet you!

I would try either program and/or the floortime program.

I'm not against or for any of the programs that I mention, I guess. I just get upset when programs promise to cure kids.

I think I'd look at something like floortime because it targets social skills. I'd also look at some of the ABA type stuff from the pyramid education people -- They have great ideas for monitoring behaviors, rewarding positive behaviors, and helping teachers teach in context.

Anonymous said...

Hi Lesley,
I have a son with Angelman Syndrome and I was reading your comments on ABA and Son-Rise. I don't know if my son is deletion or not. I am currently being visited by easter seals with the P.L.A.Y Project and it has to do with floor time but somehow I am more interested in ABA because I would like to see more functional progress. But I am also currently trying to get him into the NACD. You can find a testimonial on the NACD under Neurological impaiments. What advice can you give me in regards to therapy?


Lesley said...


Keep in mind that I'm in NO WAY qualified to make treatment recomendations. Not a doctor or therapist -- just a person with a blog.

NACD looks interesting. I've never seen it in action. Interesting...

There is a big pilot project going on right now with Angelman syndrome and ABA by a researcher named Jane Summers. (I think I spelled that right). My experience with people with AS is that ABA has to be changed a slight bit -- the rewards must be more social and less "object oriented." Most "angels" I know can't care less about the toy alot of times -- they want a hug as a reward. That also goes for programming speech devices and PECS -- they don't want to ask for juice. They can point. What they want to do is start a conversation with you.

Also check into the Angelman Project videos about behavior modification to see ABA in action.

Are you connected with the Angelman Syndrome community at all? They are AMAZING people -- I've never seen a community so strong. They would have much more specific advice for you. I've spent 5 years on their listserv, and they've welcomed me. is the forum is the homepage for the ASF

to get on the email list (which is FANTASTIC!) write back to me. I don't remember the instructions. But John, the man who runs the AS forum, is a moderator and can get you on the list.

Anonymous said...

Hi Lesley,

I am the mother of the Angelman child who previously posted in April. I am going back and forth between ABA, Floor time (which I am already doing, when I have time!), son-rise, etc. It is hard to say which is best since Angelman is rare yet autism isn't. They have proven programs for autism but not angelman. I have heard of one little girl doing Son-rise with great sucess but that was in 2000 and I can't seem to find the family to ask questions. I have gotten a lot of good feed back regarding NACD and they adress pretty much every aspect of the child, which I think is great. Again, what do think? What I don't like is for a child to be forced to learn vs learning by motivation. I am also in the Angelman forum since Nov. of last year and am so happy and proud to be part of that family!


Lesley said...

One of the coolest things about AS is that kids with AS grow and learn and continue to do so. So you're not out to beat any sort of clock. J.C. ( a girl I've known for like 7 years now) is 19 and she amazes me everyday with her maturity and how much she just knows.... I know her school has been awful and she gets NO therapy. But she learns from the world and as she grows up.

So it's not as if you choose wrong and the child explodes. :) Anything and everything that works is the right choice. You can go CRAZY trying to figure it all out. I would go with what seems to work, what the child seems to respond to, and what feels right to you. That's not a very scientific response, but I've seen so many moms (and dads) worked to death with worry and therapy. The absolute best gift you can give is being momma. It sounds like a cliche, but it's so true. J.C. has lost her mom to cancer. I can fight for all the placements in the world, for better school and therapy, but I can't replace her mom. And that's, sadly, what she needs more than anything -- that safety.

The research on AS is still very very new. I hope that one day it's as well researched as autism or Down Syndrome. I find a lot of the programs developed for people with Down Syndrome really work for people with AS (sometimes). I think I like the tone of those programs as well because they know that they are not going to teach the syndrome out of the child, but they are using the syndrome and general characteristics of it to help them figure out how to best teach the child. Autism programs can sometimes focus on "fixing" the child.

I'd just keep doing what you're doing -- keep the therapies that work, but don't forget to have a life. :)