Gifted Issues Discussion homepage Forums Recommended Resources "Gifted Should Not Be Confused with Disorder"

There's no consensus on this one. Some argue that "person first" language has exactly the reverse of the intended effect.

This article from Neuroskeptic puts it well (though the tone starts out a little snarky): http://blogs.discovermagazine.com/n...guage-that-is-person-first/#.UUXvSxnldWt

This seminal piece from 1999 was written by an autistic person: http://autismmythbusters.com/genera...air-why-i-dislike-person-first-language/

This one covers much of the same territory, but adds an important point about the "euphemism treadmill": http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3519176/

Just some food for thought!

Seriously. I was just about to say something along those lines and looked at his face and I realized he really needed to hold on that, emotionally - he needs right now to hold on to that...and I just smiled at him.

Is my gifted son highly sensitive or does he have a sensory processing disorder? The OT that saw him when he was seven said it was a sensory processing disorder but I just see his differences as being highly sensitive. He noticed everything, including clothing tags, sounds that I could tune out would bother him--but not to the point that he would have behavior issues.

Is his anxiety a mental disorder or the result of a gifted kid knowing too much about very difficult reality. My son doesn't want to hear the watered-down, sugar-coated version of anything. My husband always said our son had "a death grip on reality." My son likes to plan things, to be prepared (isn't this a scout motto?) and part of being prepared is to accurately assess the situation. His recent diagnosis has him thinking about how it will affect his ability to get a job that pays well and whether or not he should try to hide his disability when looking for a job. He is only 14 but he is planning ahead, like he always does and looking for more information in order to change his plans if necessary. One of his primary care physicians suggested that he see a doctor to possibly get medication for his anxiety after he asked her too many questions. He always felt that he had been misdiagnosed and his doctors had been giving him the same cliche' advice that they give everyone and he said he knew he wasn't like everyone else. The suggestion that our asking too many questions was an anxiety problem did not shut us up. We kept asking and finally got a correct diagnosis.

He had been diagnosed with a developmental coordination disorder when he was not clumsy because he had a few symptoms of DCD. They applied Occam's razor instead of looking for an accurate diagnosis.

Because he taught himself to read and spell and could name words that were verbally spelled out for him at 2 1/2, words that he had not seen before, people in my family wanted to label him with Asperger Syndrome. He does not have it. He used to have older friends but the scoliosis brace he had to wear from age 11 to 14 kept him from doing things with other kids. A physical disability can be very socially isolating when you live in a small town with a nice football field, but no library. When every social event for kids involves the ability to do physical things it is almost impossible to be involved socially.

Maybe true--as said I don't know about all disabilities, I think autism may be unique. But I have never met anyone with Down syndrome/Trisomy 21 or their family members who appreciate being called a "downs kid" or even worse a "downs". Never. And I believe in calling people what they want to be called, so I will listen to the self-advocates I know who have very strong feelings about his and have spoken eloquently about it. My son is not defined by Down syndrome and he wants people to recognize that.

Edited to add: I will confine my personal experience to Down syndrome. Re: other disabilities I don't think it is that difficult to find out and use the language preferred.

That has also been my experience with families living with Trisomy, deacongirl-- and shame on me for defaulting to the grammatically easier way of stating that. The child in question is growing into a lovely young woman, and I should know better.



YES-YES-YES. This is exactly our experience. EVERY social activity involves food. I hate that this is one of the first things that people learn about us IRL. But this is because of how ubiquitous food is with cultural and social experience. Food, at least to a lot of people = social currency/experience. If you can't participate in the food aspects of an activity, you are second class and "weird" or even worse, "rude." Period. If you can't participate at all because of barriers which are about safety, then you're the bad guys for "changing it all" for "just one person." It is truly amazing how ANGRY people get when you ask them if it might be possible to just, you know, not have cookies until the END of {activity}.

It's really crazy-making. My DD also seems "excessively anxious" to some people... but frankly, I think that those people just don't get it sufficiently well. The courage that she has and the grace with which she manages the load are frankly humbling to my DH and I.

About half of my DD's close friends have Asperger's. They tend to have overlapping needs, and more readily understand her desire to not be touched, quirkiness about food, about where she puts her hands, and her hyper-vigilance. NT kids tend to ask a lot more intrusive questions about those quirky behaviors. So there is DEFINITELY an up side for us in her friends' ASD!! On the other hand, maybe her experiences and life with disability make her a better friend to them, too-- they can relax around her because she can often "read" them well and make adjustments to her own communication methods automatically based on what makes them uncomfortable, and thinks nothing of it.

I do think that life with a major difference that places you outside of the mainstream can make you a much better person. Not that it automatically does, but it can.

OMG - I so hear you! My son has fatal allergies to lentils and peanuts and it looks to some fruits too - he reacts to peaches and nectarines - he used to just react to those fruits with just a stomach ache but the reaction has increased to swelling face and lips, which means the swelling throat is not far behind. People are sooooooo mean about the food allergy. People literally get violent over their right to have peanut butter regardless of the fact that it could kill my child within 15 minutes flat. My son is so anxious around peanut butter (due to literally coming to death's door within 15 minutes of exposure) that he can not eat or swallow when it is around him. The rude things people have said and done to me and him about it are unbelievable everything rom blaming me ("did you keep him in a bubble? "It's because you keep him in a bubble, he is so allergic"... I swear more than one person has actually said that to me meanwhile I ate peanut butter the entire time I was pregnant and for two of the three years that I breastfed him) to taunting him and acting like he's crazy for avoiding being near it.

Then he had a reaction to some cross contamination of fruit at school (swelling lips and hives) and the nurse had misplaced his medicine and epi-pen....He never feels safe. One of his anxiety symptoms is an inability to swallow (like at all) .... geee I wonder why???!!!

It is indeed a nightmare.

I found DS4.5's severe allergies be a lot more disabling that DS3's Autism diagnosis. DS4.5's life is impaired 24/7. The younger one is the happiest kid in the world, all smiles and couldn't care less about any diagnosis or what it might mean. In fact I am still a little more inclined to him being stubborn, strong-willed, ignorant ... and have I mentioned stubborn? but I don't know about Autistic. He's interested in age-inappropriate things which makes him delayed. But what about the fact that he does things that are 2-5 years advanced? Why is that such a bad thing? And again, his life is never impaired and isn't that what plays a huge role in diagnosing? DS4.5 is extremely sensitive to everything. DS3 is only sensitive to certain things / sounds and chooses when he reacts and chooses when he doesn't. The older one has much harder life and always had than the younger one. They are both gifted or so we are convinced (unofficially, not tested yet) but I'm 99% sure the younger one will be higher up on the scale. But for now, given the younger one's careless attitude, he'll probably have a much easier life at school and in personal life because he simply doesn't care. DS4.5 wants to be social but we have to put a lot of limits on everything because of the food allergies. DS3 is Mr. Anti-social but that is what makes him happy. It's his thing. He doesn't mind company but doesn't join in. Again, his Autism diagnosis really only impairs him in that everyone focuses on his Autism but not on HIM. You can see how annoyed he gets when people try to get him to do what they "think" he should do just turning three ... like pretend play ... when he wants to go do a crossword puzzle or read a dictionary in his game. It's the outside world that sees it as an impairment / disability. To him, it's nothing but FUN

It's just so sad, how isolating this kind of thing can be-- particularly when inclusive practices just aren't that hard.

I'm sorry to hear that Lori's son has also had the experience of not being "happy" enough with platitudes from physicians. That's really terrible that physicians would impose that on a child. HG+ kids seem to have a real NEED to own their medical conditions at a young age, and that includes reality, even when it's harsh or hard to process. My DD can talk to you about cytokine storming, and why IgE measurements aren't indicative of fatality risk, etc. etc. She knows why teenaged girls are at highest risk of death, and she is self-reflective enough to realize that she feels a lot of those risk factors keenly. This is very hard, identifying with people who died because they made errors in judgment, but it's what she personally needs to do. She does NOT need to be "hopeful" about outgrowing or an eventual treatment, because we're on our third round of "five years" at this point (insider joke, that-- it's what we all get told at diagnosis... "Oh, not to worry! There is such rapid advancement in research... it won't be more than five years and there will be a cure"), by my count. I'm not holding my breath-- but we do still follow the research with fairly avid interest, and we've been aggressive about food challenges, etc. I definitely don't like it when others (who know little about it) push a variety of "treatments" or "cures" as if we are CHOOSING to continue to live such a limited existence... I guess they all think I'm a Munchausen mom. ::sigh::

I mention that not because it's about food allergies... but because I suspect very strongly that this is yet another thing which is fairly universal about disability.

I'm so grateful that her allergist supports her interest and engagement without brushing her off or labeling her as "over-anxious." That has been a real lifeline.

I am waiting for my Munchausen's investigation... Three kids, all with issues of one kind or another... Either DH and should really never have bred, or mummy is crazy...