Gifted Issues Discussion homepage Forums Twice Exceptional Here we go again

Huh. Nice to know I am not imagining things completely. I am not expert. I am not doing big studies, etc. It's just my experience here in my little corner of the world. But it definitely FEELS very much like I described. And, quite honestly, it feels very scary - walking the line of trying to "get" the "right diagnosis." And my DS has plenty of "labels" and sometimes it feels the more labels they pile on the more harm is done. I feel like NO ONE really sees HIM anymore. And it does FEEL like once you got it, you can't get rid of it, which can be very, very problematic in some cases.

Personally I think any diagnosis at 2 or 3 should be considered "provisional" and subject to later confirmation or disproof and this should be clearly stated. But people can grow out of things like asthma so why not ASD.

I understand that a diagnosis can be comforting but I am concerned that society seems to becoming less tolerant of differences - everything has to be explained by a condition instead of just being accepted as human diversity.

Exactly. People want a definite answer or diagnosis for their child's delays/differences at age 2 or 3 (or even younger) and I just don't think that's possible. It doesn't mean that interventions can't be started, but more research should be done on which cases/severity warrant which therapies and long-term outcomes.
I also have little doubt in my mind that we could have gotten a PDD-NOS diagnosis for DS at age 1-2. His speech was delayed, he wasn't really gesturing at age 1, he spent a lot of time by himself trying to figure out how things worked rather than interacting with people. NOw that he is older we can see he is dyspraxic and had some delays (probably also atyical brain development combined with giftedness/2e to muddy up the issue more), not autism. I suspect that the school would have written up an autism IEP (which they can do as an educational diagnosis) if I had pushed hard enough, because they were/are clueless about how to qualify a child using other disability categories.

ASD is not a disease like asthma, subject to inflammatory or healing processes. It's a neurological difference (disorder if you prefer).

Experts agree that one can "grow out of ADHD." I think it's only about 1/3rd( depending on the severity) - this is pretty well accepted.

I'm not sure I understand exactly what you meant by "comforting" but I doubt that any parent or person diagnosed with a disability finds it "comforting" to have a diagnosis. My experience has been that it's enlightening - leads to personal understanding and starts the journey to making sound decisions for therapies, remediation and accommodations. Having a disability isn't something anyone I've known really *wants* or would choose to have, but having a diagnosis and an understanding of that disability is something that most people I've known with disabilities appreciate and find helpful. I hope I'm understanding that and not mis-speaking, I'm not sure I've explained it well.

[quote[but I am concerned that society seems to becoming less tolerant of differences[/quote]

Call me an optimist but from what I've seen I think we're (as a human race) getting more tolerant - at least in the small corner of the world I've experienced.


All those explanations of conditions come from acquired knowledge, from learning more and more about our human condition. All that knowledge is helping people who in earlier days would have had a far greater struggle in life and not have perhaps been successful instead be able to live up to their full abilities. I've seen this in my dh's family - first with his father, who was never diagnosed with anything but was just known as "never talks" and "very difficult to talk to". Everyone who knew him just chalked that up to personality. Now that I've parented a child with an expressive language disorder, I have to wonder - was it his choice not to talk, simply his personality, or was there a person hidden behind the lack of voice who was much like my ds, a person with amazing and wonderful ideas to share with the world but no understanding of how to get them out?

Also in my ds' generation there are more than a few cases of dysgraphia/dyslexia. One of ds' cousins wanted more than anything to go to med school and would have made an *amazing* dr - full of compassion and oh so danged smart. Yet in school she could never achieve the scores on reading comprehension etc parts of exams that she needed to go to med school (she did very well on math/science and her profs in college all felt she'd be a wonderful candidate for becoming a dr). Looking back 30 years ago, she had a vision challenge when she was very young. During the time prior to it being corrected, she remembers going to remedial reading classes at school but that eventually stopped when her eyesight issues were resolved successfully. After she'd already graduated from high school, when my dd with vision issues started vision therapy and she heard about it, she found so many similarities in her own life and her own struggles with reading. But now she's an adult, independent, doesn't have the $ to go back and get a diagnosis for the purposes of retaking med school exams etc and she's moved on in life. She'll have a wonderful life, but wow, the world missed out on an amazing dr. It makes me sad just to think of it

The cool thing is - more and more children, today, in school and with vigilant parents at home - are having their challenges recognized and identified and they're getting help and accommodations. It's a *good* thing. Really!

polarbear

Except that there are quite a few people in the autism community who resent it being called a disability or disorder or something that needs to be helped or changed (at least the very mild forms of it.) http://en.wikipedia.org/wiki/Neurodiversity

I struggle with this even in terms of DS's DCD. Does it really matter if he's uncoordinated as long as he can function? Is it really to his benefit to make him go to physical therapy/occupational therapy to "fix" him? At what point do you let it go and just let the person be? What if he doesn't care if he can ever do jumping jacks? We make him learn it anyway? No easy answers. He's in PT and OT so obviously right now I'm taking the route of "intervention" and trying to do what I can, but is it really reasonable? Who knows. Another mom friend I have has a kid in junior high who probably has DCD and she never did any therapies or anything. He is not in sports but is happy and does just fine.

I just wanted to bump this post from my husband up to the top, since it was hiding in the buffer for a while and may not be seen by some people.

I'm finding the current direction of the thread very interesting, though.

Look up the Wikipedia page on DCD/developmental dyspraxia and see if he has other symptoms (like gross or fine motor issues). No one with dyspraxia is going to have all the symptoms, but if he has quite a few, it's worth checking into it. Some people with dyspraxia don't have speech issues at all or they are mild.

Thanks, I just went and read that. He doesn't seem to have any of the other problems. He holds a pencil correctly, and his drawing and letter writing is on par with other kindergarteners. He's not great at getting the tongue of his shoe in exactly the right spot or in pulling his underpants up without getting a bit of a fold at the waistband, but that may be more that he doesn't care or notice. :-) When he writes, he seems to be able to get the words onto paper as fast as he can write, so he's not slowed down in handwriting. It just seems to be in talking where he will start with a couple of words, pause, repeat them, again, and again, and then get more of his sentence out.