Thursday, December 6, 2012

someone is wrong on the internet

As a few of you know, I used to post on an infertility message board. I hung around on their parenting-after-infertility board for the first few years, too. I didn't feel comfortable yet talking about parenting with people who took their fertility for granted. I wasn't sure if I ever would.

The question of "Why is my 1-year-old resisting solid food?" came up on a semi-regular basis. It was invariably answered by me with, "You might want to have an evaluation to rule out sensory aversions; it's free, it can't hurt, and it might help." And invariably, by another member, with, "You don't need that evaluation. Sensory issues with food would only happen on the autistic spectrum."

Now, I knew this was not true. Or...at least I was pretty sure. Bet must have been seen by a dozen professionals, by this point. All of them agreed he had sensory issues. None of them ever suggested he had autism; the few I was brave enough to ask, straight out, said there was no reason to even think it. But it wasn't just Bet. Every occupational therapist I'd ever spoken to said yes, sensory issues do overlap with autism, but of course you can have them on their own.

But the person saying this claimed to be an occupational therapist herself. So there was no arguing with her.  I just walked around muttering to myself...and to you guys: What does it matter whether your daughter is supposed to have sensory issues? Isn't the question whether she actually does?

Fast forward a couple of years with me, okay? Bet has qualified for and received years of feeding therapy. He turns out to have had oral-motor weakness, as well as acid reflux, all of which made chewing and swallowing harder for him, but yes: there's no question a lot of it was just plain sensory. And it's not surprising, looking back. Because although food texture was the first place it emerged - at 7 months, in fact, the very first time I tried him on pureed peas - as he got older, it became obvious that he has sensory aversions in pretty much every modality: sight, sound, taste, smell, touch, motion.

So all this time, I've been thinking to myself, I know I was right, but I don't need to argue with anyone about it. We did the right thing for Bet. I don't even know these other babies; for all I know, they're just not ready for solid food, and everything will be fine.

Now fast forward to the present. And...Bet has just been diagnosed on the autistic spectrum.

Oh.

Er.

I guess I was wrong, huh?

No. No, I was even more right. Because here is the thing:

No one is going to diagnose a 1-year-old with autism. 

Autism is rarely diagnosed before age 3; usually age 4. For a child like Bet, who has one of the mildest versions of ASD (and is borderline even for that), it can easily be as late as age 6.

Why on earth would anyone want to turn down help for a child who's afraid of food until then?

I will confess I thought about it for 10 seconds, but...I'm not selfless OR masochistic enough to go back there and argue this one again. But I wanted to say this out loud somewhere. Somewhere searchable. If there's anyone out there who needs to hear it, I hope they will.

***

Edited to add, because I know at least one friend who's going to panic about this tonight: 

Please don't misunderstand; I am not saying that if your child is not eating solid food by age 1, you should start worrying that she's autistic. I just hate to see a parent who is already worried be told not to consider a here-and-now solution, for reasons that exist only in an unknowable future.

See your child for who she is. Don't let someone tell you who she's supposed to be.

That's it, for me.

3 comments:

elizabeth said...

wow, sounds like some people need a dose of math and logic. I have a hard time imagining not getting my kid a free eval to help with a hard problem because the
possible cause of the problem is correlated with another problem. Glad you corrected the internet, but sad logic and methods of rationality are under utilized.

Dovi's Mom said...

Hi there, 'Seph. Remember me? Mindy? From 100 years ago? Ijust read this entry and my blood ran cold. I can't believe youre dealing with this too. Sounds like Bet is high functioning, and I dont know more details; but every time I read about a mother after infertility going through the autism stuff my stomach churns.

You're probably out of the loop, but my 2nd ART-created child has pretty severe autism; he was diagnosed at 20 months. he lost his speech and other skills over the span of 3 months and had no eye contact either. B"H now at 4 1/2 he's come a long way, but he's completely non verbal and very hyperactive and pretty much very autistic.

I'm blogging about my life currently at www.autism-parenting.com.

I'd love to hear how things are with you and both of your precious alphabets.... Keep in touch.

Trái cây said...

Internet is the biggest weapon made yet