My kids get door-to-door pickup service to their public schools. It's one of the "perks" of having autism. Remember the old jokes about riding the "short bus"? Not so funny anymore. On one of the two buses that stop at my house, I see three boys in the windows. Boy #1 is a good looking kid. He also has the telltale facial traits of Down syndrome. He sits tall, alert, and looks out the window at the world. When I wave to him he returns the gesture. His smile could light up a Broadway stage. He greets my daughter as she mounts the stairs. I call him "The Mayor."
Boys #2 and 3 are typical looking kids, blond, also handsome. They sit hunched over with their faces contorted, eyes squeezed shut and their fingers in their ears, blocking out the world as if in pain. If they happen to glance at me, they cringe and turn away instantly. (I haven't always had that affect on boys, in case you're wondering.) Boys #2 and 3 have autism.
You simply can't mistake their autism for anything else. It doesn't look like intellectual disabilities, DS, cerebral palsy, or any other category of disability. And yet the drums are beating in the national media (again) to tell you that there is no autism epidemic, simply better diagnosis. Or to promote this offensive explanation for the skyrocketing numbers of kids with autism: parents clamor for the diagnosis in order to get school services. Sure, blame the greedy parents! "I'll take reading, writing, 'rithmatic, a one-on-one aide, OT and Speech and a couple of those naked lady tees please."
In my household, autism is an epidemic. We're the New England Patriots of autism. 3 and "Oh!" (Our three daughters have autism.)
Along with telling us there is no epidemic of autism, a major push is on for two pediatric autism screenings by age two. That confuses the heck out of me. Doctors are already so good at diagnosis that we've gone from CDC stats of 1 in 10,000 to 1 in 150 in twenty five years. Is there a prize if we get to 1 in 50 kids?
I'm not sure the pediatricians are ready to take on the "two by two" challenge. They have not been trained in the neurobiological symptoms of autism. After all, autism is classified as a psychiatric/behavioral disorder, even in 2007. I asked hundreds of parents how helpful their pediatrician had been as they sought answer for their kids. Their answers were disheartening. The majority said that their pediatrician was an impediment to getting a diagnosis.
For instance, when a parent expressed concern that her child had regressed in speech and started chewing his clothing voraciously, "There's nothing wrong with him. He's just not a dummy, like most kids. He's worried about the world." To the Mother whose child couldn't sit up at 12 months, "She's a late bloomer." Another gem, "Do you see the way his eyes follow this block? That proves he doesn't have autism." To a mother whose child wasn't clapping by 12 months, "If he does have autism there's nothing you can do about it."
Here's my personal favorite. "I've never heard of a family with more than one child with autism." That's what my pediatrician told me in 1998 when I expressed concerns about my second child's lack of speech. He was in his mid-forties and affiliated with Children's Hospital of Philadelphia, one of the most respected hospitals in the nation.
I believe my old pediatrician. I'm sure he had never run across a family like mine. Because I don't think we existed. The epidemic is real. It's here. The faces of those boys on the bus tell me so.
Follow Kim Stagliano on Twitter: www.twitter.com/KimStagliano
In our pediatric practice's 30-year history, there had been only one child they could remember like mine (diagnosed in '94) - and they steadfastly refused to call him "autistic" because he understood some language. So it's not like they were hung up on labels.
We also went from "nothing's wrong but the neurotic parents" to "autistic, can't be helped, sorry" in about two months.
When our oldest, who will be 17 in February, was 15 months old...I told our pediatrician I was concerned because she was not talking....
He told my husband and myself, "you are doing to much for her, make her ask you for things.."
DUH !!!!!
4 pediatricians later, we found one who was concerned "she was not talking at 18 months"...
Thank God for that doctor.
4 Autistic children later, we knew what to look for from birth.
Be careful in Atlanta...
Jeanette
I just love your stuff!! The real deal. Raw and pure honesty! Often hard to come by. And your analogies....great stuff!!
Thanks for all you do,
Lin
Sam's MAMA
This was AFTER I explained about the terrible tandrums several times an HOUR or sometimes HOURS LONG, and the fact we had to remove everything from his room but a mattress because of his hysterical rages, in which he even threw the mattress. He was three.
Finally after my third son was diagnosed (another long story, but because he didn't talk it was a bit easier) the OT's and therapist that became a part of our life immediately saw IT and sent me to an educated doctor that gave us our diagnosis. What a trip!
(And what about the pediatrician we saw monthly?)
I did want to add that we had originally chosen another pediatrician (in the same practice), but she was doing this for 20 years, and it seemed she was just stagnating from doing this for so long... That's why we had decided to switch to the younger doctor. I firmly believe that if we were still with the older doctor, we would have been told to wait and see. And we would have lost precious time.
Then I told him that one of his colleagues in the practice had ordered an EEG for one of my girls but never followed up with any results. His answer, "We don't order EEG's from this practice. I've never ordered an EEG. I'm a pediatrician." Well, doc, somehow my kid ended up sedated in a hospital with electrodes stuck to her skull...... No apology, no, let's look into it right now and check her results. Nothing.
And he hasn't heard of the Two by Two campaign. Thank God.
My son does not have an autism spectrum diagnosis, but he does have sensory processing and non-verbal learning disorders. Our pediatrician initially told us to just quit worrying and then ultimately gave us a referral to a child psychologist, who then diagnosed our son w/ anxiety. They recommended a lot of discipline and anxiety books, and suggested having our son see a therapist, which we did for over 2 years. But it was not until I happened on a book about sensory processing disorder, said "That's my son!", and got an OT evaluation, that we were finally on the right track. My son was by then almost 5, and it was over 3 years since we had first expressed our concerns to our pediatrician.
From our OT, we learned about Listening Therapy, nutritional therapy, and Vision Therapy, all of which have helped a great deal. My son does still have "anxiety", but I know that it was at least exacerbated by these processing disorders, as well as by a host of gut and metabolic disorders. Our own anxiety as parents was also exacerbated by pediatricians and psychologists who were either unaware of what signs would have pointed to these disorders, and therefor of appropriate treatment for them, or were dismissive of inquiries about the same.
I learned that our OT now has a flyer for pediatricians about how to recognize signs of sensory processing disorder. It would be good if there was similar info, or even better, actual training, on how to recognize signs of visual and auditory processing disorders. This seems like a small pebble in a great big sea, but at least it would be something.
I know that these disorders are not the same as autism, but many people w/ autism also have these disorders. I have learned so much from parents of children with autism, and, in addition to the very real epidemic of autism, there must be many kids like mine w/ related disorders that could be treated more effectively earlier on if they were both better recognized and acknowledged.
It's always amazing to hear about professional ignorance in this area. A good friend of ours, who happens to be African-American, was told by one of the area's most prominent pediatricians that he wasn't sure if her son was autistic because it was unheard of for black children to have autism. I wonder if that doc has it figured out yet.
Great post (as usual), Kim.
I wish I could write like you. You have such candid humor about your writing
that I love.......or maybe it's that I can relate.
Before my son was diagnosed - I had a pediatrician blow me off several times when
he was not meeting his milestones. Completely missed the strabismus that he had
and needed glasses for. Oh - and I won't discuss the fact that she would not
refer me to an ENT for tubes even though by the time he was 7 mos old he had had
6 ear infections and been on 7 different antibiotics. No mention at 6 WEEKS OLD
that it is NOT OK for a child to have and ear infection! We won't talk about
the massive diarrhea and the hypotonia. Those are ALL phsychiatric/behavioral
in nature.........right? THEN - we won't discuss the neurologist that on TWO
OCCASIONS told me that there was NO WAY my son was autistic.......because he is
way too social. All too often I hear repeats of these stories from other
parents of kids with ASD. It sickens me that they can not see the
epidemic.......or is it that they just don't want to??
If you want to remove the pediatric roadblock, be willing to change the health care system.
Now our son is doing very well, and talking a lot, but I still wonder how much better he could be doing if we'd been able to start early intervention "early" - at 18 months instead of 2 1/2.
And I did,but I had to fight for everything and go WAY BEYOND OUR MEANS to get it.