Healthy Story: Mother in denial? Or in a better position to judge?

A couple of months ago I had dinner with a friend whose colleagues son was diagnosed with autism. He was understandably upset, and that was compounded by the fact that one doctor seemed to think the child was severely impacted, while a second doctor seemed to think it was a very mild case. My friend didn't think her colleague would want me to blog about it in detail, so I never did.

But this past week I met someone in a simlar boat. Only this time it is a mother's second opinion at odds with the doctors. What happens when a couple of hours of observation by medical professionals results in an analysis that seems at odds with the observations of people who spend the other 22 hours a day with a child? Read on...

Doubtful Mom (DM) fully admits that, at one point, she and her husband were concerned about their 2-year old. She wasn't talking much; that was the main problem. They, both highly educated and verbal people, felt her speech was delayed, and that's why they took her to the doctor in the first place. Of course everyone has anecdotes about simlarly delayed children and positive outcomes. My nieces and nephews all seemed speech-delayed, but my mom would tell stories about my brother, their father, that seemed to indicate it ran in the family...and it took a while, but they all caught up.

But no one likes to take chances with their kids (as opposed to the chances we'll take with our own health) so DM andher husband felt they should take her in, just to be safe. They took their daughter in, and then sat on a waiting list for 5 months to get a full battery of tests conducted.

In those 5 months, their concerns dissipated as she started to talk more and more. But they still took her in, fairly confident that they were being over-protective, but doing the right thing.

The results came back with a rather shocking (to them) diagnosis: PDD (Pervasive Development Disorder) of NSO (Non-Specified Origin.) "NOS" (not otherwise specified.) Now, the NSO NOS means that the doctors didn't feel it could be classified as autism exactly, so it's like saying...something's wrong, but we're not sure eactly why or what!

[Thanks to Dr. Lindeman for correcting my acronym.]

What gave DM pause was that they were saying her daughter had issues in all three areas: social, verbal and physical. And she can't bring herself to buy in to the diagnosis.

She can't buy that her daughter is physically delayed (to the tune of being equivalent to a 16-month old) when she's seen her climb around on the monkey bars like a, well, monkey, doing more than older kids. And she can't buy that she is socially delayed when she has observed her interact with other kids and do just fine. And even her delayed speech, which was the original concern, seems to have caught up to other kids.

The doctors were all ready to jump in and start them planning on special needs schools, and DM has this alternate idea which is that a couple of years of therapy (which apparently their state provides for free to such children) will be sufficient to improve whatever needs to be improved in time for her to enter kindergarten with other kids.

Is she protecting her child from being needlessly stigmatized and held back? Is she in denial?

Coincidentally we were joined at dinner by a friend of mine who works for a very reputable school for kids with learning disabilities in New York. He told us about the conflicting philosophies: aggresive mainstreaming of such kids into "regular" schools vs. schools like his that appear to be "regular" schools, but accept only students with such disabilities.

DM and her husband have what seem to be impossible decisions to make.

What would you do?

Or have you had to make similar decisions?

I hope I can keep you posted on what they do.

Comments

[Anna]

I vote with the parents. I recommend one of the most fascinating books I've ever read: The Magic Feather: The Truth About "Special Education", by Bill and Lori Granger. It's an eye-opener for anyone whose kid just doesn't "fit the mold".

[DP]

I'm in a similar situation. Some folks think my son is "normal" if a little different. Others suggest that he has Asperger's, ADHD, Bipolar, etc. He is also gifted . . .he has tested well above other kids his age in IQ tests. So, is he different because he is so intelligent? Or does he have some disorder? I love him just as he is . . .

[Elisa Camahort]

Thanks Anna. I will pass your book suggestion along to Doubtful Mom.

I often wonder if we are eager to "treat" "conditions" that back when I was a kid would have been let go a lot longer to see how they worked themselves out!

[Elena]

Ignore the doctors. This comes from personal experience in the position of the child in question. I'm the oldest of three children, and all of us were late talkers. My younger brother and I didn't start speaking AT ALL until about two and a half, and my youngest brother used his own sort of sign language until he was four.

When I was about two, doctors began wondering if if was deaf or mentally retarded. If I hadn't gotten the sort of doctor who overdiagnoses, no doubt I would have been placed in special ed. classes. Fortunately, the doctor I was assigned had a very simple test for this kind of situation. He picked up a pen, dropped it on the floor, and stated loudly and clearly,"Could you please pick that up, Elena?" I got off the chair, picked it up, and gave it too him.

The doctor decided that I obviously wasn't deaf and could obviously understand him, so I would probably just start talking in my own time. And sure enough, I started talking a few months later. The pattern would be repeated in my younger brothers as well. Now we're sixteen, thirteen, and eight (respectively) and you can't shut us up!

My advice: If it runs in the family, and the girl seems to be doing well now, I'd disregard the doctors. They don't know anything.

Elena

[Dr. Lindeman]

Thank you for the post. It's a terribly important issue and I'm glad you are discussing it.

I would only add that the letters after "PDD" are "NOS" (not otherwise specified) not NSO.

Otherwise a terrific and well-crafted post.

[Elisa Camahort]

Thanks Dr. Lindeman! And thanks for the correction. I will correct the post ASAP.

And Elena: it's pretty rare to get to hear about such a situation from the point of view of the kid in question, so I really thank you for posting your experiences.

[V]

my pediatrician had a saying 'mom is always right - and YOU'RE the mom." That helped tons when my mom & mother-in-law had opinions that differed from mine, re my kids. In time, you develop a gut feeling about your kids. Unless there's something pathological about mom, I'd trust a mom's instincts over the doc's...and I'm a physician.

[Zebee Johnstone]

I'd be inclined to ignore them. When I was about 6 I was diagnosed as dyslexic - the only learning disability anyone had heard of back then.
So Mum asked "what now?" and was told to enrol me in remedial reading classes. "But we can't keep her in books now!"

THey'd diagnosed me on the strength of poor writing, never bothering about the reading or asking parents or teachers about me. (I can't believe the teachers were that stupid.)

Doctors do tend discount information gained with the Mk1 eyeball, no idea why.