Lots of Hope When You Hear About “That Autism Thing”
March 27, 2008 by Kristina Chew, PhD
Filed under Health
Confronting ‘that autism thing’ is the name of an NPR story about how a family, the Browns, learned that their son Gibson has autism. As a baby, Gibson came home with on oxygen pump and a feeding pump; he didn’t point or say “mommy” and “daddy” or wave when he was a year old; the pediatrician and other professionals did not think that he showed signs of autism. But on a visit to Santa last year—when Gibson played with Santa’s beard and did not look at him—-the “mom Santa” asked he had “‘that autism thing.’” At first Gibson’s mother said “no, he doesn’t”; afterwards, she and her husband took Gibson to see an autism specialist who said:
“When I make a diagnosis of autism, generally I wait for the parents’ reaction.”
And the Browns’ reaction was one of hope for all that can be done for Gibson today. Says Katrina Brown:
“To hear that there are things we can do for him, I feel so much better.”
I feel that way everyday—because there is a lot that we can do to help our kids achieve their full potential. There is a lot that kids like Gibson and my son Charlie can do.
It’s weird how much parents can know and the medical professionals sometimes seem *not* to know. Our youngest had no words until age 19 months, after completing several weeks of speech therapy. He had serious speech delays, motor delays, retained primitive reflexes, all documented in evaluations. He waved bye-bye at 11 months, then never did it again until a few weeks ago. He’s got “low arousal” and fleeting attention. He runs in circles in our livingroom to stim, and likes stimming on overhead lights and fans. He does not do imaginative/pretend play, and he does not have names for any of the people in his life.
And yesterday, after acknowledging all of these things, the developmental pediatrician said that she doesn’t see any glaring signs of autism. And the thing is, even my husband, who was in serious denial about our oldest, knows better. Time will tell, but we can tell, too. I’m really not surprised that an observant mall Santa might have been able to see something that the MDs missed.
Until he was three, TH had two pediatricians who dismissed our concerns over exactly the traits that eventually led to his diagnosis. Their big focus, as was the case with our youngest and the developmental pediatrician, was “eye contact.” TH made eye contact with us…not sustained, but it was there. Our youngest does too, although even more fleetingly. I’m truly starting to think that eye contact as a measure of anything is REALLY overrated.
For eye contact the only consistency across the autistic spectrum is that eye contact is abnormal, not that the person will stare holes through you or that they can’t even bear to look at you. Can’t bear to look at your is more common but its a relative measure. The doctor you are referring to is making the classic mistake of knowing there is a weakness and then presuming to meet criteria there must be a complete absence of the trait. Such as doctors who claim someone is not on the spectrum because they have an idea of what the feeling of love is, or because they actually care about other people regardless how instinctive or not the ability to understand other people is.
I hear the same refrain over and over from parents. Once when assessing a middle schooler for possible Asperger Syndrome, the school psych wanted to “dissent” from the IEP team’s recommendation of a diagnosis and further therapy because “I talked to her for ten minutes and she made good eye contact.” ARGH!
I’m not entirely sure why, but Charlie’s first ABA program did not have an eye contact/”look at me” program. More than needing to make eye contact, Charlie needed to learn how to focus and control his eye movements (this helped him with learning to imitate motions and so to work on his speech). He’s gotten better at this as he has gotten older and more coordinated physically.
He’s always (since he was a young baby) looked out of the corners of his eyes.
I can’t make eye contact very well at all, and I am very uncomfortable when I do it *unless* I’m intensely interested in what I’m saying or in what is being said, and then it’s laser like. But it’s very hard for me to know how long to look or not look when small talk is involved. Our middle son, who does not have a dx on the spectrum, almost never looks anyone in the eye and actually says that it “hurts” him. TH spends a lot of time looking sidelong and up and down, but he makes eye contact a lot more than his younger brother.
I really think the eye contact thing is misunderstood and vastly overrated as a marker of autism. As the MDs like to say, it’s not pathognomic.
Hopefully soon, the eye contact issue will not be the deciding factor in diagnosing/ helping children! My daughter totally makes eye contact with people. But, as with everything else, it’s just out of sync with what typical people do. I think the eye-contact is what lost me a few years in a diagnosis and subsequently help for her.
There are diagnostic tools such as Autism Diagnostic Interview, Revised (ADI-R) for full-blown austism, abd the Childhood Autism Rating Scale (CARS) for ASD.
I’d be wary of any diagnosis made without regard to these standards which if I read between the lines is happening at some, perhaps many, schools.
When we received our daughters diagnosis, we were in no way surprised. Our biggest mistake was listening to her pediatrician who showed no concern whatsoever over her loss of language. We also had no idea on how to get her help. I think now a days as soon as we brought up our concerns, she would have been screened.
I’m not sure about confronting the autism thing. My daughter who had many of the markers of autism from birth, plummeted in her social awareness, academics, and became agressive and violent. But after a time she started to come back. She still has a long way to go, but last week her grandparents noticed how happy she was, and my mother took great pride in being able to make her laugh.
She is starting to make up games such as leaning around corners to peer into a room and giggling when she is noticed. She is starting to bounce and catch a ball.
We took her to the children’s gardens at Huntington Garden’s in Pasadena. There is a part where spices are put in squeeze bottles and the child leans over to smell it. I only had to position my daughter once, after that she leaned over on her own and waited for the bottle to be squeezed.
She was interested in the magnetic sand, but most important of all, my sister who was watching us as I had my daughter touch the magnetized filings, said it looked as if my daughter wanted to play with the other children.
Parents need to know that their children may become worse, perhaps much worse for a time, and even though that time may seem an eternity they will start to come back.
My daughter is starting to show a mischievous streak. At her grandparents when she would get close to a room we did not want her to enter, she would still try to do so, but would giggle each time she was called away.
@mayfly,
Charlie does the same thing—”sneaking” close to a place he is not supposed to go to, and turning away when we “catch” him, and giggling.
You wrote “Parents need to know that their children may become worse, perhaps much worse for a time, and even though that time may seem an eternity they will start to come back.” Yes, that happened with Charlie—very very tough. But things have gotten better—infinitely.
Really good to hear about how your daughter is doing! Really good.
I do want to say that psych is an unfortunate exception to the majority of professionals I work with. We do a full battery of tests such as the ADOS, CARS, GADS, etc.
@CG,
Charlie has not had an psych evaluate him in years—-last one was really when he was getting diagnosed at the age of 2 in Minnesota.