About this blog.

My son was diagnosed with PDD-NOS at 24 months. I created this blog to bring meaning to the often-confusing label. Sometimes I have answers. Other times, just more questions.

Sunday, April 19, 2009

"Recovery" reaches the masses.

Visit msnbc.com for Breaking News, World News, and News about the Economy

This video segment features Karen Exkorn, author of The Autism Sourcebook, and her son Jake. I read the Autism Sourcebook early on and, as I blogged, I did not find it compelling. Bluntly, I don't personally believe that "recovery" can be sourced to ABA, so I found her story misleading. Rather, I believe that the natural process of maturation, combined with a rich environment (which ABA can provide), causes certain children to cease to meet the diagnostic criteria. (But keep in mind, I'm a blogger, not an expert.) And on a personal note, I bristled at her recommendation that a 2 year old be subject to 40 hour per week of treatment.

To be clear: I'm not discounting the benefits of ABA, where the results are short of recovery. ABA is probably the best therapy for many classically autistic children, and I don't doubt for a moment that ABA is the best bet for a positive outcome for many.

Incidentally, Jake was initially diagnosed with PDD-NOS, not classic autism.


Jen said...

Oh, how I agree! The whole "early intervention" thing I think can be very misleading. I DID NOT start Evan in any type of therapy (except common sense mommy therapy) until after he turned two. But, wow, he reached all the milestones much sooner than the average child with Fragile X. So, if he HAD been in therapy all that time, his accomplishments would have been attributed to his "early intervention."
Granted, there are cases out there where a child's disability may be beyond the parents' capabilities, or maybe they want the extra help--fine. And yes, Evan is in therapy twice a week now, for an hour each time. I'm in no way saying therapy is "bad," I just think it can be overrated, and some people tend to attribute ALL of the child's development to the therapy instead of just natural maturation.

Anonymous said...

I agree about the role of natural maturation. It's called "developmental DELAYS" not 'absences.'

I have found Charlotte will get there when she gets there. I think therapy has helped, but not with every single thing.

I didn't watch this video because it's late and i'm tired, and I don't know much about ABA so I try not to comment on it.

rainbowmummy said...

gah, I shouldn't come here so early in the day, now I am so angry and it's only 9am.

Last two posts have left me full of the RAGE.

And did that doctor in the last post just call autism a fing disease?!

Laura said...

Jen, yeah what part of that maturation is attributable to therapy versus maturation is the real mystery I guess.

goodfountain, I know I'm skating on thin ice here but this really is a big part of my will to blog. When Brad was first dx'ed, I desperately searched for a path to follow. There were a few floortime voices out there, but they weren't very loud. So I feel compelled to say, look you don't have to do ABA and you're not a bad mom for shunning the only evidence-based treatment. And I get mad because I think the word "recovery" f's with people's emotions.

Rainbowmummy, welcome back! Sorry for the upset. I got all issues-y again this month.

Laura said...

correction - first line of last comment: "maturation" s/b "improvement"

rainbowmummy said...

Still on Ed's computer :0( but he's at work, yay!!

It's that woman Jenny McC she drives me nad, and then the other vid with the peers, gah.

I want a Jim Carrey for my team, who is on my side? Well actually that Dr Cox from scrubs I believe is all about banning the R word, he has a son with DS. But I don't know any celebs with asd kids that are of my mind set. And as we all know celebs RULE the world, gah.

Patience said...

My problem with ABA is that it is expensive so out of the range of many parents. (how good is it if you have to go into debt up to your eyeballs?) Also ABA is not the gold standard they would make it out to be and pure ABA often makes for a child who achieves but is still not quite natural.
Floortime and similar therapies can be done at home by all parents and is mostly free (possibly a few bucks to learn a routine but I did it straight from the book as there were no consultants in 1999)
I also agree that time and maturity change things as well.
Why do some kids get better and others don't? I still think some kids on the spectrum also have a degree of mental retardation or other barriers described by Greenspan in his book The Child with Special Needs.
The other issue is that there have always been children like this but in the days of larger families; there was less expectation because you didn't have all your eggs in the one/two basket of our smaller nuclear families of today.
If you look back on some family histories; there were kids who were a little slow or "off" and some just improved through being constantly exposed to siblings etc and the parents working with them.
Today people have less time and fewer children so it's a "crisis".
Just my two cents.

indigo doll said...

"Rather, I believe that the natural process of maturation, combined with a rich environment (which ABA can provide), causes certain children to cease to meet the diagnostic criteria."

couldn't have put it better myself. nothing makes me bristle like the layers of inherant ignorance implied in the term "recovered", or, worse, "cured". let these people, at best, wear "manager" badges rather than "miracle worker" ones.

rainbowmummy said...

laura, your comment, wow, you touched my heart xxxxxx

Shari said...

Our regional center is paying for ABA for my little guy. I'll take it. 10 hours a week, then 15. But there is no other therapy services in our area. No Floortime, or other (what I'm calling) social or play type therapy, so I'm doing that on my own. I do believe that maturity will help him. In fact, my hope is that he'll catch up and function on his own someday. If someone wants to call that "recovery", then they are welcome to. Even though "recovery" may not be the best way to describe it, I can't think of another suitable word. Caught up, maybe?

I'm still new to this, so my emotions are still all over the place. And I'm trying to be optimistic, but I think for my son, it is a matter of teaching him what doesn't come naturally. I really don't see this as a long term disability. He needs extra work in the social and language areas that most kids don't. Some kids need extra help reading, or doing math, or in physical areas, my child's need are in learning to talk and be social. But I know of one young man that this is a disability, and I don't think 40 hours a week of ABA would have made much of a difference. His mom is my son's pre- preschool teacher.

Quirky Mom said...

I just hate the way autism is portrayed as the boogey man.

And the drama.

Shocker of the day: our brains are plastic. Ugh. Like, duh.

Laura said...

Patience, Interesting. I'm highly skeptical of the MR label in reference to autism. Rather, I would guess it's a greater degree of sensory dysfunction that is at play. And yes, our parents were more chill about everything we grew up.

indigo doll, and you know, the therapists themselves are more realistic. Karen Exkorn has no professional credentials that I know of.

rainbowmummy, thanks hon and the feeling is mutual.

Shari, I'm with you in that, when Brad was dxed, the state would have covered ABA through age three. Since he was only 24 months when he was dxed, this means we would have received the services for a full year. We were able to get Floortime in lieu of ABA. And I understand the emotions you describe. Been there, done that, own the T-shirt. You didn't go so far as to describe the "try anything" philosophy, but I know that's a common way to feel as well. And for the record, I believe in "spontaneous recovery", if you will, or growing out of the dx. What I vehemently object to is the implication that recovery is intrinsically tied to services, ABA in particular. So she ties the "recovery" label to services that children may or may not need, and she delivers that message to well-intended and emotionally charged parents. Not a fan of hers. ps hope your kiddo is doing well, and keep up the good work, mama!

Quirky mom - well I am happy that people are starting to focus on the on-the-spectrum/off-the-spectrum phenomenom, but I think tying it to services is a big red herring. I wish they'd focus on identifying the 20% ish subset to which this phenomenom applies, and figure out a way of dx'ing it on the front end so that we're not subjecting toddlers to 25 hours per week of svcs when they would improve with or without the services. They seem to be going in the opposite direction.

Emma said...

In response to the whole PDD-NOS thing - there are many doctors out there who prefer to give a PDD-NOS diagnosis for such a young child. My child was given a PDD-NOS diagnosis at 2 1/2 (he is nearly 4 now) but he is very clearly Autistic. If he "recovers" it will not be due to just maturation. We are working our butts off to get single words out of him and to get him to stop stimming almost constantly. I WISH I had been able to get him 40 hr/wk of ABA at 2 1/2.

Laura said...

sorry if you took offense - I don't mean to belittle the services. ABA is a best bet for a positive outcome for certain children; it is not a prescription for recovery.

Emma said...

No no, no offense taken - clearly you were very in-tune with your son's needs and were able to put together a program that is appropriate for him. I am thrilled to see how well he is doing. I just worry that many parents go into denial "It is just a speech problem - why does everyone try to tell me it is autism???" These parents avoid the autism label and the services that might be critical. ABA is not for everyone and I actually wish I had a floortime component to my son's program. I have been urging his school to work some of the ideas into his day.

Nyx said...

It's interesting to me that our developmental pediatrician recommended floortime right off the bat. never even mentioned aba, I had to find out about it myself. Still don't really know what it is all about. But there is a bill in Congress right now, which I haven't been able to get the time to find out too much about, except that according to some emails I got, it would cover ABA but not Floortime. I haven't been able to read the bill myself yet so I don't know if that's true. It's called the Autism Treatment Acceleration Act 2009. There's more info here: http://www.autismvotes.org/site/c.frKNI3PCImE/b.4784269/k.C0E5/ATAA.htm. any idea why Floortime would be slighted?

Laura said...

Nyx, what you wrote about your child's developmental pedi encouages this cynic. The mandates tend to cover ABA and not Floortime, because ABA is the only "evidence based" treatment. See: the "Lovaas study." On the issue of the addition of Floortime to those mandates, I reserve judgement. I like Floortime and RDI, but I see both as therapies that can be carried out by an unskilled parent, if the parent is provided with consultation. I don't think the same can be said for ABA. Plus resources are not unlimited. I dunno. I reserve judgement.

Nyx said...

That is interesting. I will look for that study. I am surprised that Floortime is considered not evidence-based, since I have seen studies referenced. maybe they aren't blinded are whatever the scientists like to call it. fyi, I did finally break down and read the bill for myself, and I think it would cover Floortime if it passed in its current state, unless I was reading the wrong version of the bill. Basically, the bill defines "treatment" in a broad way, but says "including ABA." It's not an exclusive reference. So, ABA has gotten express inclusion but Floortime has not. However, Floortime should be covered in my opinion by the broader clause. So we'll just see. I wonder if the bill will go anywhere? It would be wonderful. Of course, I'm sure there are all sorts of other flaws in it, but as we know there always are. Surely something is better than nothing ....