Saturday, May 07, 2011

You can’t always get what you want.

People say the damndest things when you have a child with autism. And the worst offenders?  In my experience, it’s the professionals doing the diagnosing.

It took a year and a half to finally diagnose my son.  Don’t get me started on that; that’s a whole other post altogether. 

We saw countless professionals of various stripes to try to get a handle on the “situation”.

Now, remember, my son was diagnosed nine years ago.  Hopefully things have changed, but based on the stories I hear, maybe not.

The most egregious comment was from a woman who worked for the Maryland Infants and Toddlers program. Run by the Maryland State Department of Education, this program identifies and supports children with developmental delays.  Assessments are free.

She evaluated children for autism all the time. It was her job. This was her living.

When she came to my house, she didn't see a boy who spun around for hours. (My kid was never much of a spinner.) He didn't sit in the corner, banging his head on the wall.

She didn't see him lining up toys in a perfect line; he played appropriately.

He looked at her once or twice, when he was motivated, but otherwise was engrossed in his match-the-shapes toy. (She said his eye contact was “purposeful”. Can you feel my eyes rolling?)

But he used to have good eye contact, and now he didn't. He used to sleep through the night, right up until he stopped. He had at least one hundred words (my sister counted them once) and was starting to use three word sentences, until the language left him one day.  All in all, it took about a week to regress.

I expressed my concern about the loss of language. Honestly, that was the scariest part for me.

And do you know what that woman said to me?

I shouldn't want it so much. Stop wanting the language to come, and it will come.

I am not kidding. She told me that the reason my son was not talking anymore was because I wanted it too much. She saw no signs of autism.

She was lucky I was polite.  I was polite back then.  Now, not so much.

Or how about the psychiatrist who finally diagnosed my son with moderate autism? 17 out of 28 on the ADOS is the score that sticks in my mind. (The ADOS stands for Autism Diagnostic Observation Schedule, a test used to diagnose autism. The psychiatrist said that he was on the moderate side.  Moderate does not mean mild, just in-between mild and severe.)

Eight days after the birth of my second son, we were in her office to hear results. My stitches still hurt. Mother’s Day had just passed us by. My husband had taken Conor to be evaluated the day after I gave birth to his brother.

I asked her what the chances were of our new baby having autism. He was there, in the car seat, on the floor of the drab office. Instead of answering me with a statistical number or referencing a scientific study, she told me to take him home and love him.

She made a little hugging motion to emphasize her point.

Man, I could just feel my eyes bugging out of my head.  Just love him?

Ok lady, isn't that a given? Of course I love him, but love doesn’t help a kid with autism.  Therapy does.

Of course, maybe what she didn’t say was worse.

She did not give us an idea of what to expect going forward with our second son.  Turns out, they had a study going on of siblings of children with autism in which I could enroll my infant and receive free evaluations every six months through age 8. But I had to find that out on my own.  Six months later.

As for Conor…oh, they had a structured preschool for kids with autism, but sorry, it was full and there was a long waiting list.  She never mentioned the early intervention study that was going on at her institute.

Nor did she mention the autism-specific center at the institute where she worked.  (Turns out, the lucky parents get transferred to the autism-specific department when they call.  If the lines get busy, the unlucky parents get sent to the regular psychiatry department.  Unlucky us.)

So yes, I took both my boys home and loved them (hugs).  But we also enrolled Conor in an appropriately structured preschool, started occupational therapy, stepped up the speech therapy, and started looking for a behavioral consultant for an in-home behavioral program. 


Two footnotes-- 

Found this on the Internet; not sure if it’s helpful. "The recurrence rate in siblings of affected children is 2% to 8%, much higher than the prevalence rate in the general population but much lower than in single-gene diseases."  From the article "The Genetics of Autism" by Muhle et al., published in Pediatrics in 2004.

Parents in Maryland no longer have to do everything on their own, nor do they have to go into this autism journey uneducated.  Check out the Pathfinders for Autism Resource Center at 1-866-806-8400 or via the web at  There’s a whole section on Newly Diagnosed.

Check out Mick Jagger's pants.  Could they be any tighter? Great song, though.

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