The Important Thing……
“The important thing, experts say, is early, intense and individualized intervention”
notes an article today in the Traverse City Record-Eagle about the P.L.A.Y. Project, which provides in-home and center-based services for autistic children, and about the Autism Resource Network of Northwest Michigan. It’s a statement that would be hard to disagree with, and I have said it many times before—-nonetheless, as my son Charlie has gotten older, my thoughts have evolved. The important thing is early acceptance, lifelong education individualized to a child’s learning, communicative, and sensory needs, and………
What is “the important thing” to you?
22 opinions for The Important Thing……
George Wade
Jul 4, 2007 at 12:28 pm
I have two daughters, so the important thing to me is prevention: for the sake of grandchildren.
Not just of autism but of all the disabilities that arise from junk food and pollution. Autizm -> Azthma -> Rheumatoid Arthritiz -> A –> Z.
Then what is really important is integrating all the ideas you have on AutismVox into whole, healthy children.
Kristina Chew, PhD
Jul 4, 2007 at 1:10 pm
That’s a tall order to integrate it all—–for myself, it has been most important to focus on how to make the world a better place for my son as he is.
Mary
Jul 4, 2007 at 2:01 pm
I guess I’m with all of you on this. While we work with children who have the disorder intensely and love them as they are, I can’t help but want to find out (really) what is causing the epidemic so we don’t continue to damge another generation of childen.
Phoebe
Jul 4, 2007 at 2:03 pm
Loving them without reservation exactly as they are, right then, even if they never move more toward neurotypical.
In my mind, everything else has flowed from that.
neroli
Jul 4, 2007 at 2:27 pm
“Early” as an age-related term is much less relevant than “early” as in “better sooner than later.” There’s reassurance here: children will always be communicating to us about who they are, this day, in their unique ways.
The windows of opportunity, in theory, are countless. The practice is to look for them, every day; open them when we find them; and take what we find without expectations—-we might find views we had not considered, and find ourselves enjoying them.
Sarah
Jul 4, 2007 at 2:52 pm
This blood test is for certain (and the makers admit) unknown antibodies. This test will not detect all autism by virtue that autism is a description of behavior and not the root cause of said behavor. My understanding of the antibody research is that it may or may not be linked to regressive autism. By the nature of looking at antibodies there is an autoimmune issue. Aspergers will probably not (and certainly not in my case) be detected in a blood antibody test since……..it is genetic to my family and many other families. Aspies are here to stay because many of us have children and don’t mind if they are like us. Aspies in my family do well in life for some reason.
There is research being done to look for syndromes that are currently unknown such as cholesterol uptake issues (X linked?) and why a small group of autistics have dysmorphic issues. No antibody blood test will help with that. These may be de novo mutation issues or may run in families.
Right now the attitude at PubMed is that no test will be released to the public until they are certain it WORKS. Also, the CDC and PubMed are not interested in offering prenatal testing for autism until they are 100% certain it works 100% of the time since most parents will abort that fetus.
Any start up pursuing this angle will not be doing a get rich quick scheme.
MomtoJBG
Jul 4, 2007 at 2:53 pm
I agree with what Phoebe said about loving them rignt now as they are.
Sometimes I feel the pressure (for some reason, especially from some moms I know of very “HFA” kids) to therapize my boys every waking moment of their days. They are not catching on to some things as quickly as some kids on the spectrum do, but I don’t want to just pile on more hours of ABA, at the cost of some normalcy of life.
While early intervention is important, so is having an enjoyable toddlerhood, and also having a sane mom… well, I can always try :)
Sorry to vent, but I’m having a moment!
Joseph
Jul 4, 2007 at 3:44 pm
“The important thing, experts say, is early, intense and individualized intervention”
I wonder what the “experts” base this opinion on. Lovaas (1987) perhaps? That would be pathetic.
“Intense” might be a good idea if your intention is to burn out autistic kids.
Kristina Chew, PhD
Jul 4, 2007 at 4:14 pm
And that has been known to happen—-and development is not necessarily without regressions
ordinarybutloud
Jul 4, 2007 at 4:15 pm
The important thing for me is to intervene kindly and carefully and to avoid harming the child in a misguided attempt to cure him or her.
Sarah
Jul 4, 2007 at 4:15 pm
What I wonder is, why are the educational services provided to autistic children medicalized so much? All children need guidance and education. No child will thrive without “intervention” of some sort or other–it’s called child neglect and it’s rightfully illegal. Maybe autistic children need a different kind of education, but why is that called “early intervention” when the guidance, support and education provided to young NT kids is not? And why *must* the “intervention” provided to autistic kids be categorized as intense? I worry that this mentality can lead to overloading autistic kids with too much therapy time and not enough time to just be a kid. Many adults find a 40-hour work week stressful, why are some ABA people trying to push it on toddlers?
bev
Jul 4, 2007 at 5:33 pm
Sarah,
Very well stated. The very word “intervention” gives me the creeps.
bethduckie
Jul 4, 2007 at 5:37 pm
The important thing is belief in your child as a whole and intact individual, just as he is. Incredibly hard when all around people are screaming that your child is damaged, diseased, defective…
mcewen
Jul 4, 2007 at 5:56 pm
I’m not sure what it once was, but now I’d say it was something like ‘being healthy’ - not in an autistic / non autistic way, just simple good health. There are few things more devastating for a parent than a child in poor health as everything else is then compromised, less able to enjoy life, less happy, everything becomes a struggle and strain. For all the criticisms that our children endure, most of them just ’suffer’ ordinary childhood ailments.
[I think maybe I’ve been affected by reading too many blogs of parents with children who have terminal illnesses and it’s made me much more [even more] aware of how lucky we are.]
Cheers
Kristina Chew, PhD
Jul 4, 2007 at 6:09 pm
Healthy and happy!
George Wade
Jul 4, 2007 at 8:56 pm
A lot of lot of diverse opinions, and they are all right, no one better than the others. That’s how we treat our kids so that is how we should treat the opinions, too: each one has something to offer, even those that appear to be wrong.
Daisy
Jul 4, 2007 at 11:09 pm
Have you read Margaret Wise Brown’s “The Important Book”? The last part says, “The important thing about you is that you are you.”
Simplistic, yes, but it can keep us focused on our children rather than their labels.
Kristina Chew, PhD
Jul 4, 2007 at 11:27 pm
We don’t have that book…..yet!
To Your Health
Jul 5, 2007 at 8:07 am
[…] healthy” was one response to yesterday’s query about “the important thing……” we hope for. In a […]
AJ
Jul 6, 2007 at 12:11 am
To me, “important” is listening to Eleanor sing ALONG tonight with a CD of songs….in tune, in time, with her version of the words which were pretty recognizable…listening to this as I cooked dinner….looking around the kitchen and breakfast room and seeing the big grins on the faces of her father and sister and brother…everyone getting a kick out of it at the same time….seeing how much we all enjoyed her enjoyment of the music….
That was important tonight. Tomorrow, it may be something different. Whatever it is, we’ll enjoy that, too.
But we enjoy her, and John Paul’s, differences every day. If we were all alike, that would be pretty boring. Their differences make us smile….and isn’t that what kids do?
Kristina Chew, PhD
Jul 6, 2007 at 12:29 am
I’m smiling reading about the singing, and the smiles—–
Caleb's proud parents
Jul 6, 2007 at 8:48 pm
Our son like all other autistic children, is an angelic being. He was sent to us not so that we can make HIM better, but so that he can make US better. Better people, better parents!
Have an opinion? Leave a comment: