Wednesday, February 24, 2010

Children with autism can (and should) be helped

There is a common line of thought in some quarters that children with autism will improve naturally on their own, with or without treatment, and that parents have an unfortunate tendency to credit improvements to treatments when it is really just the child's natural growth.  Take for example this instant classic -
Most likely, your child has improved, because autistic children will learn and grow anyway, just as other children learn and grow, though on their own schedule. You might even credit the treatment you've chosen, and write a glowing testimonial to persuade other parents. This will give you the satisfaction of having found "the answer", and assuage the sinking feeling in the back of your mind that you've just been played for a sucker.
In one sense, this idea is true.  A child with autism, like every other child, will continue to grow and learn on their own, with or without help.  The problem is that while these children will grow on their own, they are starting off at huge disadvantage when compared to their peers.  Even if they naturally grow at the same pace as other children they are going to continue to be behind where they should be.

But the problem runs deeper than that.  Children with autism don't grow and learn as fast as their peers.

As I wrote about a few days ago, children with autism show a slower rate of growth then their peers.  When you combine this slower growth with the fact that children with autism start out at a disadvantage what you are left with is a child that can fall further and further behind their peers and will need extra help to narrow the gap.

Or in other words, it is unlikely that a child with autism will grow far enough, fast enough to catch up to where they need to be, even under ideal circumstances.  Autism is, after all, a disorder of normal development.

You then have to ask yourself - do you want to help children with autism catch up or not?

I am not talking about the quirky behaviors of older people with autism or accepting the differences that autism causes or correcting the biological imbalances that children with autism show.  All of that is important, but I am talking about the basic skills that every child needs to know.  Skills such as listening, talking, dressing, counting, reading, and understanding directions - all of these basic skills (and many more) can be -and typically are - impaired in children with autism.

If you decide to help teach these children the skills that they need to learn (and you should) , you are going to needs a set of tools to use and plan for how to use them.  Right now, some of the best tools that we have for teaching children with autism are speech therapy, OT, and behavioral analysis based treatments (ABA).    Research has consistently shown that these tools are generally an effective way of of helping children acquire the skills that they lack and hopeful help them to catch up to their peers.

But how do we know that a specific treatment is responsible for the improvements rather than natural learning and growth?  The simple answer is that you can't know - either way you slice it.  If our children were perfect little lab experiments we could repeat the early years with or without the therapy and compare the results.  But they aren't and so there are no do-overs - you have to make the best choice you can with the limited information that is available.

The good news is that this is the sort of question that evidence based medicine is equipped to answer.  And while the question of what autism is or how it can be best treated is still up in the air, there is a large body of work that suggests that these therapies for autism are effective at teaching children with autism and improving their outcome.

But don't take my word for it.  Perhaps you should go see what the CDC, American Academy of Pediatrics, the National Institute of Health, Autism Speaks, and the Autism Science Foundation have to say about it (just to name a few).

Be a good parent and don't listen to people like the one I quoted above.  Give your child with autism the help they need to reach their potential, they are going to need all of the help they can get if they are to get past the debilitating effects of autism.

5 comments:

  1. Hi MJ,

    "Instant classic", huh? Thanks!

    But as I told Dad4Kids:
    "I'm referring to any number of over-priced, over-hyped treatments and programs. Whether it's chelation or HBOT, clay baths or secretin, OSR-1 or ABA, any of those quackamamie treatments that have not one iota of scientific backing."

    Those first 5 are pure snake-oil. We can discuss and debate ABA, but you have me at a disadvantage, sir. I happen not to have a scientific bone in my body, (nor math, nor mechanical, nor electronic, anything technical). I do have a natural ability with English, that's about it.

    I haven't read that post you linked to yet, but I am not aware of any reason why an autistic child should grow at a slower rate, unless they also have an additional medical condition, such as malabsorption or gastroenteritis. I don't believe it has been shown that autistic children are any more susceptible to having those than others. My reason was neglect and malnourishment, between the ages of 10 and 15.

    Even if you're correct, life offers no guarantees. We're all unequal to others in some respect, is that fair? It is what it is. You pays your money, and you takes your chances.

    You're right, there's no do-overs. Please see the recent comments of "sadderbutwisergirl" in that post. She's just 16, and tells of her experiences with SpEd and such. No do-overs to be a loving, accepting parent, either.

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  2. Clay,

    "I haven't read that post you linked to yet, but I am not aware of any reason why an autistic child should grow at a slower rate,"

    Because they can't pick up skills the way that normal children do - they (normally) don't imitate or watch what adults are doing and they tend not to try and engage in social interactions. These are the ways that young children learn.

    I have seen this result in this latest study as well as several others and I have seen it in my own children - children with autism acquire skills at a slower rate than their peers and this places them at a disadvantage.

    The entire goal of therapies like ABA is to try and teach children the skills that they need to succeed - skills that they have a hard time acquiring on their own.

    "I don't believe it has been shown that autistic children are any more susceptible to having those than others"

    Children with autism do tend to have problems with maintaining proper levels of nutrition, although whether this is an absorption issue or something else has yet to be determined. From my own experiences with my children, we try to give them what they lack in supplements but we still have a hard time keeping their levels of basic nutrients where they need to.

    As for GI issues, I would refer you to what the recent consensus report on gastrointestinal disorders in pediatrics that said something along the lines of "the preponderance of the data suggest that gastrointestinal symptoms are more common in people with autism than in "typical" people". The jury is still out but it looks like there could be something there.

    I rambled on about it here - http://autismjabberwocky.blogspot.com/2010/01/consensus-report-on-gastrointestinal_15.html

    "Please see the recent comments of "sadderbutwisergirl" in that post."

    I tend to ignore her because of what she has written in the past, specifically about a buddy of yours, comparing him to a Jewish person helping the nazis during the holocaust.

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  3. Because you had said, "Children with autism don't grow and learn as fast as their peer" I thought you were talking about physical growth. I guess not. You meant learning skills, and yes, they will learn slower, and some won't learn some of those skills at all. Again, life is unfair. All we can do is try our best with each child.

    I would agree that one-on-one teaching might be most helpful, but it seems to me that ABA is a bit cold and clinical, checking off tasks completed, mands complied with, instead of having a warmer relationship, allowing the child his/her own space, teaching things as opportunity permits, instead of the teacher always being the "driving force" The difference is only one of attitude. But these people go and get a BCBA degree, consider themselves "experts", and demand authority that actually works against the teaching process. A person without any kind of degree, but with a kind attitude, might be a better teacher.

    "I tend to ignore her because of what she has written in the past, specifically about a buddy of yours, comparing him to a Jewish person helping the nazis during the holocaust."

    Might be a little harsh stated like that, (I know how sensitive your sensibilities are), but I consider that statement to be an apt analogy. He recently said something to the effect of "Ari denies that autistics are hopeless." Well, apparently Ari didn't have Mitchell in mind when he said whatever, because Mitchell certainly IS hopeless!

    Again, it's all a matter of attitude. SBWG is actually very nice. You may not know it, but she tried to chastise me for dogging Mitchell awhile back, and this was even after Mitchell had criticized her.

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  4. In addition to her comments comparing me to a Jew who helps nazis, SBWG also agreed with a post written by ND bloggers Kowalski and Turner in a comment she wrote stating that parents involved with autism speaks or who want a cure for their autistic children are like members of the Ku Klux Klan who are forced to raise black children.

    It always interests me what neurodiversity has to teach young impressionable kids.

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  5. Clay,

    "but it seems to me that ABA is a bit cold and clinical, checking off tasks completed, mands complied with, instead of having a warmer relationship"

    I think you have a very mistaken impression of how ABA is done. The clinical side is, well, clinical and data driven but that is medicine for you. That does not mean that the therapists don't have a warm relationship with the children that they are working with and I would even say that that relationship is required for the ABA to work well.

    "I know how sensitive your sensibilities are"

    Actually, I have a very thick skin and an not easily offended. If you read some of the abuse I get when I comment at places like LBRB I think you will be able to see that. However, there are a few things that will bother me, things such as mocking someone's disability or trivializing something like the Holocaust would be another.

    As Jonathan puts it, SBWG seems to be an impressionable and naive young adult who has picked up some ideas which she lacks the life experience to understand.

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