About this blog.

My son was diagnosed with PDD-NOS at 24 months. I created this blog to bring meaning to the often-confusing label. Sometimes I have answers. Other times, just more questions.

Friday, March 14, 2008

Report from Late Talker Group

I've been a member of the late talker group for a few weeks now. The syllogism that provides the foundation for the group philosophy is: (i) autistic children are generally retarded and know little about human nature; (ii) their children are intelligent and relate to humans; (iii) therefore, their children aren't autistic. The group counsels its members on how to dodge the diagnosis, likening the push to diagnose and diagnose early as a witch-hunt.

I categorically reject the syllogism. As neuroscience is beginning to demonstrate and as high functioning autistics have been blogging, individuals with ASDs are often much more intelligent than people give them credit for. Tests that rely heavily on language don't sufficiently measure their intellectual capabilities.

That having been said, I'm not sure that there's any harm in the late talker group. The parents hold their children in high regard intellectually, in spite of their developmental delays. Are the children handicapped by their parents' insistence that they're not autistic? My sense is they're not. The late talker group advocates Floortime and other "naturalistic" methods of teaching language. So while I disagree with the philosophy, I think the end result is generally positive.

Update: In the spirit of peace, I've deleted the portions of this post.

Update #2, January 14, 2010: I'm adding an update because I noticed an uptick in traffic for search terms like "late talker and denial". I originally authored this post almost two years ago. Here's what I think now: The line between autistic and not autistic is blurry at best; science has yet to explicate what autism actually is. A parent should be able to contemplate that their child is autistic without being castigated, or worse yet, being met with a chorus of "don't give up". Autism is not a scarlet letter. It refers to neurological difference that impairs communication and social skill. In many cases, it also engenders strength and talent. As for the group, dodging doctors and getting mad at the world for observing the obvious is not healthy. Nor is relying upon groupthink (with strong censorship) for medical advice. And speaking of censorship, the lack of a tolerance of criticism or even diversity of ideas is a clear indication of how weak their own ideas are. Strong ideas can withstand scrutiny. Theirs cannot.


Judith said...

Yikes! Poor kid. :(

The Bailey's said...

I found your blog on Autism Speaks. I hope you don't mind me commenting. My son also has PDD-NOS, but some different traits than yours. I find it hard sometimes. People think that because he does talk, he's not autistic. It is nice that you have a blog for kids on the milder side. Please feel free to comment to me anytime.

esther said...
This comment has been removed by a blog administrator.
Jack said...
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Sungold said...

Laura, I too am part of the Natural Late Talker group. I wish you and your son the very best. He's very young. And honestly, all things are still possible for him. Given the fact that your evaluation was brief and that your list of his traits is very innocuous (lining up trains is almost universal among 2-year-old boys!) I think your initial impulse to question the diagnosis was reasonable and healthy.

Of course, a confirmed autism diagnosis would mean significant challenges but NOT the end of the world. I agree with you that autistic people span a huge range and that they can lead rich lives. If your initial diagnosis turns out to be true, I know you'll cope.

I think you're smart to pursue Floortime because you're very unlikely to cause harm with it. (By contrast, ABA can be very inappropriate for non-autistic kids and for some autistic ones, too.)

To give you one point of comparison, and to illustrate that we in the NLT group are not just in denial, let me share a few things about my son, now nearly 5. Half a lifetime ago, his behavior, comportment, and characteristics were similar to your son's as you describe him (and also as you show him on the YouTube video). My son is still a little quirky, but he speaks well and is definitely not on the spectrum - unless the whole family is. :-) He won't need any special accommodations in school. We got a good evaluation, did some speech therapy, and avoided panicking. That was the right course for us.

That said, I accept that you feel the NLT group differs from you philosophically. Please understand, though, that the moderators share your concerns for proper scientific diagnosis, so I'm not sure we're really all that far apart. Sometimes members need to vent, but that shouldn't be confused with the board's philosophy.

Finally, I agree with Esther that it's absolutely unethical and unacceptable to repost someone's posts from a closed discussion group without their permission. It's inexcusable. Quite apart from copyright infringement (which may be an issue) - just imagine if you were part of a therapy group and one member recorded another's comments and broadcast them! That's essentially what you've done here.

You've done the right thing by removing the verbatim quotation. I'd like to see you take one step further and issue an apology for having overstepped. I would make sure that any apology reaches the person whom you copied without permission.

Sungold said...

Laura, I appreciate your apology. I'll make sure the NLT moderators pass it on to the affected person.

Thanks also for stopping by my blog.

One last point (not to belabor it), but that 19% figure points to the problem of overdiagnosis, not to the great success of therapies. Treatment can make autism easier to live with; it can't cure it. And while I sympathize with the desire not to let kids fall through the cracks, wrong diagnoses often result in inappropriate treatments. I'm pretty sure my son would've been diagnosed as autistic if we lived in the Silicon Valley instead of in a poor Appalachian county where services are vastly inadequate. It's ironic that this actually worked to his advantage - but this also points up the problems in the various systems.

Here's wishing you and your son a soft landing in that 19%.

Erik said...

I made the film "Autistic-Like: Graham's Story" to share our struggles to find the right doctors, the right treatments, and even the right words to describe our son. We ultimately found our way to Floortime, and wanted to share our experiences with others. You can check out a preview at www.autisticlike.com.

All Best,

Mersiha Causevic Podzic said...

To mom and dads who worry about their child not talking according to the given criteria:

I want to write this post for some time. I am a mom of 4.5 year boy who was a late talked. His sister spoke at age of two like an adult and he was three and did not talk.

We took him to different doctors, who said he was fine and we need to wait. One said he thought he was quite manipulative and intelligent, but I did not see that. We read to him every night since he was born. No single night was without the book or two. We did everything we did with his sister, but he was different.

He was very difficult. He would always run. He would run and look at the side while running (totally something I read was a sign of autism). Could not walk normally outside. Constantly engaged. When you google for this symptoms online – they all indicate to autism. Absolutely all. I read so many post from so many parents, all being worried, but never ever I read a follow up post, where those parents share how things developed after a year or two.

So this is for all those who worry: My son, 4.5 now, speaks his native language + French + some German (being in international school). He knows all the letters. He can read all the names of the kids from the class. Knows all the continents and which animals live in which part of the world. Teacher, who was very sceptical at age of three, is so proud now. A few days ago, she told us how he was the only one who could set the puzzle in 3D. None of the kids had that ability, even though they would show them the process. She said that he is very advanced now.

We still talk to him a lot. We still read a lot. He does have grammar issues time to time, but is doing great.

So dear parents, have faith in your kids. Don’t give in to all the comments online. Play with your kids, talk to them, invest in their education. They will speak when time. Each kid is different and not all are developing equally.

A mom from Austria, Vienna.