Tuesday, May 15, 2007

Objections to Early Intervention

The latest on my craw's radar: people who (appear to?) object to early intervention. Remember that my son is five. He is a product of early intervention. I believe in making sure that ALL people get the services and supports they need- that is, early intervention is not about telling other people it is "too late" or an alternative to providing service to older children or adults. Early intervention is identifying children who need services and support as early as possible and providing he service and support they need. It is about trying hard to get kids learning the skills other "normal" kids pick up on their own, and helping them learn to function, to play, to learn about their world and communicate with their fellow human beings.

Although this attitude may not be shared by all folks who believe in early intervention, I can only speak to the attitudes I know. Maybe there are folsk who believe they are curing their kid. I have no such allusions. I am teaching my autistic child to live in a world designed for people who are not autistic.

But the objections to early intervention seem to be something I can't put my finger on. I sometimes have this trouble between when my critical thinking alarm goes off ("there's something wrong with this argument...") and when I actuallyhave time to process what the other person is arguing to be able to pinpoint the problem ("Oh! I see. You think the sky is yellow. Well, that doesn't work.") At this stage in my processing, I can only say that when people scream very loudly and get very upset and start attacking other people because of their parenting choices and semantics of their goal, there is usually something wrong i the argument- especially when they suddenly seem to be in my face.

Sometimes there is something wrong with my own thinking. I'm learning all this too, after all. I am not a perfect savant about autism or even about Joey. I'm no mindreader, and I have to learn what he's thinking and feeling the same way other people do- I'm just better at understanding him than most other people. I understand that I don't know everything. But usually by the time I have ideas that get out here, they've been pretty thought through, so that they are at least reasonable, even if not always right. There is no need for shouting, or getting surly. Present me with new information.

But usually when I have someone surly and sharp telling me what an idiot I am, there is something wrong with that side of things. The assumption of stupidity is a huge red flag. The assumption of lack of research is another red flag. It makes me start to look very carefully at what is being said- and what is being implied.

Back to the case in point: early intervention. So far, there seems to be an anti-early-intervention segment, and they are very, very angry. So far, the objections to early intervention seem to be:

1. You shouldn't medicalize child development.
2. It is impossible to diagnose autism before age 2.
3. Children before age 2 often seem to be autistic.
4. Early intervention is intended to "cure" autistic children.
5. Early intervention services deny services to older children and adults (apparently because the services are intended to "cure" autism.)


Child development is already medicalized. That's why we go to a pediatrician for well-baby appointments every 6 months.

If we had been knowledgeable about autism, we could hav diagnosed Joey before the age of 2- closer to 18 months. He was showing signs while we were still in the hospital, but diagnosing based on sensory problems would probably be very tricky.

My non-autistic child is VERY different from Joey- even with the sensory problems my other child has. With them side-by-side, there is no mistaking that Joey was autistic from birth. I have not met a normal child who "seemed" autistic the way autistic children do before age 2. I have met children with other disabilities who present very similarly to autism. And for the record, Joey did have things like eye contact, smiles, and interest in people as a baby. No one sign is going to give you a diagnosis of anything, much less autism.

Early intervention helps children learn valuable skills and gain functional skills and education that other children "pick up" through imitation and normal processing. It helps autistic children learn how to learn. It does not cure autism.

Early intervention does not eliminate the need for future service, and does nothing at all for people who currently require support and service. It lessens the needs for specific types of service for children who are able to benefit from early intervention.

In Joey's case, the smiles were disappearing. The ability to communicate was not developing. He was becoming increasingly frustrated and upset. WE WERE LOSING HIM. That may be hard for some people to understand. It seems particularly difficult for some autistic adults I have met. From this point of view, I was watching a happy, healthy, loving child turn into a sullen, frustrated, angry child. As a parent, that means something must be done. Now. If I had not moved my butt and gotten him into some kind of intervention, what would have happened to him? I can tell you this: he would not be speaking. He would have remained rustrated and angry. He would have had less and less access to the world around him. I understand that some people think that this is what I should have done- allowed him to "be autistic" and do nothing. I can't please everyone.

15 comments:

Heidi said...

This could have been my post a few months ago when we started ABA. Our Sami is 3 and two months now. Watching your child disappear in front of your eyes over a matter of months is very very scary. It's hard to explain to people who a) are not parents b) are not parents of autistic children c) just have a different attitude to life. What are we supposed to have done, nothing? Of course you are doing the right thing. Wishing you lots of strenght and positivity

Camille said...

Are you willing or able to cite where people who are "against" early intervention have said so?

I am against willy nilly "early intervention." You seem to think that you know what early intervention looks like in all cases. I don't think it is the same or even similar in many cases.

Early speech therapy is excellent. They can take my tax dollars and pay for that for any kid who needs it, autistic or not. Early physical therapy and occupational therapy, ditto. I have seen what early ABA intervention can look like and what it looks like is stupidity and abuse.

So lets define "early intervention" before we start to argue over it.

I have never seen anyone say that early intervention comes at a cost to denying older kids intervention and that there can only be one or the other, that it's a zero sum game. Who says this?

There is a big problem with an early autism dx, because autism has come not only to be "medicalized" but demonized to an extreme degree. Parents are literally terrorized by the diagnosis, "your child will grow up to be dangerous and will attack and bite and break people's arms, will be a mindless monster.... unless you do our early intervention... chelation... diet.. vitamins..."

I would rather see a kid go without a dx until he's 6 years old than be labeled as a monster at age 18 months. There's no undoing the damage done to a relationship between parent and child when the parents believe they have a monster on their hands. No early intervention will change that. Only accuracy and a wilingness to say, "we don't know how this kid will turn out, but he's bound to be great." will change that.

Another Autism Mom said...

The "demonizing" of autistic children cannot be extended to all early intervention professionals (therapists or the doctors doing diagnosis). I never got that impression from any of the people I dealt with during my son's diagnosis and IEP process. Everybody kept telling me how adorable my boy is, and that although his development was delayed, he had a lot of potential and was very smart in many areas, had a great temperament, etc.

ABA, when it's well done, is far, far from being abusive or stupid. I think it works great, although it is not enough - in my opinion, floortime and other therapies that work on joint attention in a more natural setting should be part of the program from the start.

The problem in autism circles is that the debate is so radicalized, so emotional, that it takes a long time (if ever) for a parent to sort through all the information, bickering, and propaganda, and find out what really helps on your child's case.

Mary P. Jones (MPJ) said...

I do find that when people strongly disagree with me, we usually have some fundamental difference of values or understanding. But it is hard to explore those -- to listen and understand what is behind the disagreement -- and not get caught sidetracked in arguing over the nit picky details that aren't really at the heart of things.

I see this in autism circles -- vaccines, ABA, etc. But this divisiveness and judgmentalism is also present in the larger parenting community: breast vs. bottle feeding, co-sleeping vs. crib sleeping, working vs. stay-at-home parents, etc. And in our world at large in discussions over taxes, economics, government, war, etc. Many people feel they have the one answer that is right, not just for them, but for everyone.

Our decisions, our lives, our families, our children are complex. And we're all doing the best we can.

BTW, FWIW, I have 2 children, 1 autistic and 1 NT and they were different *in utero* -- I have talked to other autism moms who saw a significant difference between their autistic and NT kids from birth.

Joeymom said...

I didn't point out or link to the various sources or post the rather extensive collections of emails on purpose. I have no intention of having people track down other people and start yelling at them the way they yell at me.

ABA works very well for Joey. We have very specific skills he works on, and it has done very well in teaching him the building blocks of larger tasks, so that he can perform tasks independently. In fact, the bulk of ABA method is discrete trial training- which most teachers do when teaching any task, even in normal classrooms; they just don't don't call it DTT. You learn to add until you do it correctly. Then you learn multiplication... until you get it right. Then...

JoeyAndyDad said...

Hello. Camille, I don't think anyone could argue that willy nilly intervention is a good thing.

But what exactly are you arguing?

Early intervention, driven by systematic inquiry into the cause of the symptoms presented by the child is an absolute good.

If it's not ASD, there are still dozens of developmental problems that could be causing the symptoms.

The summer before we got the diagnosis, I read widely, including Thomas Sowell's book about his late-talking child. I wanted to believe Joey was an Einstein-like late talker. He was and is a bright child, who is as fun-loving as any child I've ever met.

But Joey is not a "normal" late bloomer. If we had not intervened when we did, he would have had ever so much more difficulty speaking than he is encountering now.

I sometimes kick myself for not doing something earlier- and I had voiced concerns about his lack of speech. But we decided to be cautious and not rush into anything. Joey's physician agreed.

How would you like to explain to a young adult that their development is permanently capped because you didn't think the signs were any big deal?

No, the same strategy is not going to work for everyone. My wife and I are not ABA fanatics. But it works for Joey (who knows for how much longer, he seems to be outgrowing it), and that's the bottom line.

Your six year old who has had no services has a permanently lower ability to gain language. Brain development studies show that the speech centers in the brain begin to lose their ability to gain new languages by about five.

Ever wonder why most people cannot be fluent in more than one language, but children raised in a different-language household are fully fluent in English and whatever?

Brain plasticity. Those children you read about locked in a closet till they're 11? They'll likely never learn to speak.

You can't wait on speech. You can't wait on ot, or the other proven therapies, if the child needs it.

Oh, and hi. I'm JoeyAndyDad.

Niksmom said...

Camille says: "I have never seen anyone say that early intervention comes at a cost to denying older kids intervention and that there can only be one or the other, that it's a zero sum game. Who says this?"

Actually, it's not being said in those precise words but there is federal mandate to set aside 15% of special ed funds currently in place to ehn use them for "early intervention" including screening and providing services to "at-risk" children. Frankly, I *would* consider this to be a form of denying services to older kids in that it reduces the funds currently being used for those kids.

Wow, I don't know what sort of "professionals" are "demonizing" autism and telling parents their kids will be monsters. They ought to be reported to the appropriate state medical ethics board. That sort of language is akin to telling someone with Alzheimer's that they will become a blithering idiotic child. No one would put up with that...why should parents of children with autism be any different in that regard?

kristina said...

I think of ABA as a very imperfect "science"/teaching methodology----we have been seen bad, mediocre, and very good, and it's up to parents to educate themselves and speak up when they know something is not right, and also to know when to listen. I've worked hard on myself having a good relationship with therapists because so much information is communicated between them and myself. I think some ABA therapists have been listening to the criticisms (which are often well-warranted) and have even (whether they've said this or not) integrated some floortime and RDI-esque strategies, as well as ideas from speech therapy, OT, and sensory integration. Our program does not insist on Charlie learning certain skills "because he has to" (like shoe-tying) and we constantly reconfigure the curriculum to suit his needs---and when Charlie is not learning, the therapists (and me) look at ourselves and try to figure out what we (not Charlie) are doing wrong.

And we do have to keep sending out the message, it's never too late to teach and to learn.

laurentius rex said...

Have it your own way but you measure by a standard that could not have been imposed in my time.

I am what I am, because I am what I was and will be the result of that.

Whatever intervention or lack of it was governed by place, by time, by social convention and some of what others would have autists be is bloody US american shite and nothing else. It ain't human, never was, just a blip in time that's all.

Now don't get me wrong, though I guess destiny has already determined that it is written in the stars that you shall, but I am not against appropriate intervention, but for all the world , the world is wrong I shall say again the world is WRONG.

I am not a fit to fit in with the world, and if the world will not afit itself to fit with me, then there is gonna be a mismatch and only one of us will win, but this much I can tell you the loser is the world.

Joeymom said...

I am what I am, because I am what I was and will be the result of that.

And thus shall Joey be.

Just hopefully that will include being able to care for himself and communicate with others.

So are we all.

abfh said...

I've written a post that addresses some of these issues:

What's Wrong with Early Intervention?

On the brain plasticity thing... those general studies of child development may not be applicable to autistic children. I don't know if anyone has done specific studies in this area, but I'd guess that a child who learns to speak at age 6 probably isn't going to lose his brain plasticity as quickly as children who begin speaking earlier.

Camille said...

Joeyanddad,

Frankly, to pull rank here, when was the last time you studied child development and neurodevelopment at the university level?

Me? It was last year. The stuff about critical periods has been vastly overstated. Yes, there are critical periods, but the word now from the "experts" is that they are not as rigid as believed. Some of the most rigid ones have to do with the development of vision, but the ones about aquiring speech are not so well understood.

And, as ABFH pointed out the "critical periods" for autistic kids could be and do seem to be quite different from those of ASD kids.

I for one don't have a hard time picking up the accent of a new language. For many people what I do with ease, parroting sounds, is impossible.

I use the example of Peter the Wild Boy, too. He was thought to be non-verbal and perhaps really was unable to speak when he was found as a "wild child" in Germany. His parents had been Germans. (if you want more details get the book "Not Even Wrong" by Paul Collins). He was taken to England at around age 10 and given to a tutor who couldn't get him to speak ... presumably the tutor was trying to teach him English... well, you know those critical periods... there just nasty...

Except that as an old man when he was interviewed by a sort of amateur antrhopologist of the day (hmmm, the day was around 1780 if Autism Diva remembers) he spoke English. Excuse me, but this is very impressive. He spoke English pretty well, but he didn't like to talk and after he answered a few questions he got irritated and he switched to gibberish to get the man to leave him alone. Worked well, too.

Early intervention has been oversold, that's what I think. Early intervention as compared to locking a kid in a closet or beating him every day 10 hours a day for being different, surely early intervention is better. But "early intervention" compared to what lots of normal parents give their kids anyway, I'm not convinced is such a big need.

If you have a child that can't talk, is having meltdowns, yes, pull out all the stops to get this kid a way to communicate, but from what I have seen, ABA is not about getting the kid a way to communicate, it's about getting the kid to sit at a table and point to red. And to sit on command, and to stand on command, and make eye contact on command, ....

And the goal of Lovaas style ABA is to make the kid "indistinguishable from his peers" so if a person is not following Lovaas, then a person needs to make that distinction, but understand that many people absolutely want a kid that can pass for normal at all costs. And they don't consider how awful the cost can be to the kid.

There should not be a zero sum game with early access to needed services being denied kids who need them, but lots of kids don't need them.

Now they are talking about intervening with kids who don't answer to their names at 12 months, they are not talking about "intervening" with a 3 year old who can't talk and is frustrated all the time. THEY that is scientists are also talking about training infants to make eye contact by forcing eye contact on newborns and maintaining it so that the kid doesn't descend into the "hell that is autism." This stuff is pyscho. What next monitoring the behavior of a fetus? Do you know that there are people who study fetal behavior???

It's good that they study fetal behavior, but when do they start trying to manipulate it???

Camille said...

To make it clearer. Nobody ought to be demanding early intervention and no one ought to be offering it free or at a cost, unless there is at least some scientific support for the kind of intervention being offered. AND if it's terribly expensive, I have a big problem with that. It sets off alarm bells of terrorizing parents into thinking they need something and then jacking up the price because the "traffic will allow." At least the rich parents or those in rich states will have it and others will be told that their child missed that critical period, tough on them...

It's cruel and unusual if there's no objective basis for it, especially.

Joeymom said...

Shoud I point out, Camille, that you are doing exactly what I said raises red flags?

We have first hand experience that the ABA program we are running now is helping Joey- by leaps and bounds. Are you saying I should discontinue something that is working for my child- and has little chance of hurting him?

You say "early intervention" has been "oversold", but then also say if you have a non-verbal child, you should get help for communication. YOU CAN'T HAVE IT BOTH WAYS. Either you want these kids to get help, or you don't. See the problem? Its a battle of words. If you have a child who needs help, you get the child help.

Period.

If my child had Downs Syndrome, no one seems to have trouble with getting early intervention. If my child had hydrocephalus, nobody would complain about early intervention. If my child had mental retardation, heck, the system is set up specifically TO intervene with support and services. But for some reason, because my child had autism, I am not supposed to intervene? That makes no sense whatsoever, no matter when his "plasticity" is, or how long it lasts.

Remember, early intervention is NOT to deny older children and adults services. It is about getting help as soon as possible when a problem presents. Having my child a screaming ball of frustration is a problem. I intervened. Like all children, it has taken some trial nd error- and still does- get the correct services and service providers in place (just like picking out a school for a normal child!). Why do you have a problem with that? Why does anyone?

Zaecus Celestis said...

"Early intervention helps children learn valuable skills and gain functional skills and education that other children "pick up" through imitation and normal processing. It helps autistic children learn how to learn. It does not cure autism."

"Are you saying I should discontinue something that is working for my child- and has little chance of hurting him?"

The problem is probably an insurmountable one, but an easy one to state.

ABA is not a neutral tool. Nor is everything that makes a neurotypical happy, even a neurotypical parent, an unharmful and positive outcome for an autistic.

When neurotypicals are no longer the sole arbiters of what is valuable and desirable, ABA (either early or late) might be useful to apply to a broad base, until then, each parent using it is obligated, not by me but by nature, to take all of the extra effort and put in all of the extra work to make sure that what they are doing to help their child act in a desirable manner isn't too costly a process for the child.

This is especially difficult for parents and professionals who see the 'desired outcome' as one that, once learned, ceases to require any effort.

It. Never. Does.