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

With these gray-area kids, it seems to really depend on who you're talking to. Which seems...totally aggravating, inconsistent, bizarre, and unscientific.

As far as ASDs/ADHD goes, it goes back to my own pet theories that there is very little we understand about these disorders, that they are a vast spectrum, and that they probably represent a number of different "wiring" issues in the brain, not just one or two.

I am almost certain my son does not have Aspergers or ADHD, but I am just as certain he has several of the characteristics - and the ones he has, he has to a pretty strng degree. Because he is so much like his dad, I am also pretty certain they stem from the same complex makeup of high IQ, dyslexia, dysgraphia and a few other choice learning disorders. I think it is all blended together like the roots of an aspen grove - what you see above ground may look like very different trees, but below the surface they are all of the same system.

It is part of why I've fought to not have him labeled but also fought to have accommodations as if the label were there.

Sorry, DeeDee, that's not what I meant (I may have worded it badly). I agree with you that just because a child has a disability that doesn't make him/her sub-functional.

What I meant was relating to my comment about pathologizing variations in typical childhood behaviour (Vs. a legitimate disability).

My interpretation of the paragraph that I cut and pasted was that unless a child is a perfect round peg that fits into society's perfect round holes (ie does not deviate from being totally typical), this could be considered by the AAP to be an "impairment in function."

Maybe I took it a little too personally (having two square peg kids and having been one myself).

For example... my DD10 is extremely sensitive. Today two student teachers who have been with her class for several weeks said goodbye to the class (I guess they're finished their practicums or something). My daughter has been crying on and off for over an hour, and will continue to have the blues about it for the next several days. Is that typical for her age? Likely not. (Square peg, yes.) But impairment in function? I'm so sorry my kid isn't "typically sensitized."

Again, maybe I'm over reacting (my cafeteria fringe scars are showing, lol). It would have helped if the term "impairment in functioning" was clarified.

The tricky thing is that in our family's experience that line between variation and disability is hard to define in a way that isn't highly personal. (With some disabilities, it can definitely be more clear-cut, but even something like Deafness can become a point of proud differentness rather than stigmatized disability.)

Our DS10, who has autism, has done a lot of thinking about this. He feels that his autism both is and is not a disability. When it's letting him memorize gobs of data and hyper-focus and excel at things that interest him, it's a "difference" from other people. When it's getting him into trouble because he's out of his depth in social situations, it's a disability. Which one it is depends on which situation he's in. He is okay with knowing that it's both.

I guess I'd like to get to a place as a society where what's in the DSM is just useful heuristic information and not stigmatized, so that people can use it as needed without anyone feeling judged, like they're being told they're inferior or challenged about their kid being odd in some way. I (idealistically) think that is how this information is meant to be used: as clarifying help.

DeeDee

This.

And see, having the experience of both that kind of disability/difference and one which HAS no real up side...


I consider my DD's "disability" to be almost entirely "disabling" in the sense that it NEVER seems to provide advantage, but continuous disadvantages. It alters everything about your lifestyle, and this is often not at all obvious to outsiders, but it is nonetheless true. I'd also consider diabetes and seizure disorders to be like this.

It is not just physical disabilities that present that way, though-- not too many people would argue that depression, schizo-affective disorder, or crippling OCD is "sometimes positive."

I really do think that this may be what separates "differences that come with certain challenges" from "disability" in the conventional sense.

I'd characterize my PG child's cognitive capacity as the former. In some settings intended for NT individuals, she faces challenges that they do not. It certainly isn't much of a social bonus for a young adolescent girl. On the other hand, in OTHER situations, she is at a significant advantage over her more typical peers.


I'm unsure that it is correct to group "natural ways of being different" in with those differences which, in an earlier age, would have had PROFOUND consequences in terms of survival.

KWIM?

I can certainly see how ADD/ADHD is a way of being "different" which presents some significant challenges in some settings, and likewise, how being on the autism spectrum might or being blind, too. I can't see how having diabetes, a primary immune deficiency, or a severe mental illness is in that category. I don't think that severe, brittle asthma confers ANY advantages under any conditions.

Anyway. I do agree that destigmatizing all ways of being "human" is ultimately the goal. Maybe that involves no longer categorizing those conditions which are NOT universally "limits" more properly as challenges in some settings and advantages in others, and recognizing what is meant by "major life activities."

Understand, though, that this runs the very real risk of "ranking" things which are "really" disabling and those which are... er... well, "not real" and that is NOT what I am suggesting at all. I'm very definitely NOT suggesting that having ASD isn't a limitation in very real, very painful, and very significant ways. But I think that recognizing that it can also be a STRENGTH is a good thing.

On the flip side, considering more carefully how other hidden disabilities may come with NO real advantages is perhaps bundled with a greater perception/inclusive awareness of what is meant by "difference" or "disabling" to start with.

JRA-- disabling, no real "up" side. ASD-- advantage in some ways, disability in others.

In the latter, perhaps it is up to families/individuals to decide whether or not to "treat" the condition in order to gain greater normalcy. Much like cochlear implants are somewhat controversial in the deaf community-- the experience of difference and of disability are irretrievably intertwined and highly idiosyncratic by individual circumstance.

I'm sure there was a point to this ramble, but anyway... I seem to have lost that particular thread.

OH-- I know! Greater awareness in general. Greater compassion and tolerance for all of the ways of being different. Wouldn't that be awesome?? I don't see it happening anytime soon, of course... but it would sure be awesome. Wouldn't it be great to have this conversation?

My child is/has {difference.}

-- Can you tell me about what that means for your child in this setting?

Yes-- I'd be happy to!



Maybe we just need for all of the 'experts' in the world (both instant and credentialed) to finally grasp that INDIVIDUALS who live with various conditions/differences become experts in those conditions/differences. We are the best source of information about what it signifies in most settings. I wish that this was recognized. Advocacy would be so much easier if we didn't have to fight just to be heard.

Amen.

HK I get what youre saying but i think many people will see no upside to asd or adhd. I don't know that my DD experiences any upside to her asd, we've tried to sell it to her as such but I think it's pretty much a sales pitxh at this point in time. She doesn't have the obvious strengths that some kids, particularly gifted kids, on the spectrum have, she just has a whole cluster of deficits, conversely SES not as severely disabled as many on the spectrum are... My Youngests child's dietary restrictions have no upside and cause a lot of stress and impact everything we do, but they have way less negative impact on our lives than my eldests problems do. Although she's not at risk of dying, she is at risk of extreme illness lasting up to a month and comin complete with severe developmental regression, a diet mistake is a VERY big deal to us, even though its not life threatening we do live in fear of every possible mistake or incident. And it's just not even close to being in the same league as my eldests aspergers.

It's certainly interesting, and it's very individual.

I can cite one advantage to my kids' version of ADHD (DS is the only one with a formal dx but DD seems to be similarly affected): They're easy as pie to exercise. I know that sounds like a stereotype but whenever I hear people say "I just can't get Johnny up from the couch" I'm mystified by that (what must that be like?).

Meanwhile I have serious reservations about so called "benefits" like the "creativity" and "ability to see detail that others miss" that is thought of as being part of ADHD. My kids are both highly creative and detail oriented, but how do we know it's from the ADHD and that they wouldn't be like that without it?

I watched a video of Russell Barkley (sp?) debunking the idea that ADHD is a "gift" and he became very heated and agitated as he insisted that there are no upsides to this disorder. Mind you, his is only one opinion, and I'm a firm believer in finding silver linings and finding the water that's in the half filled glass etc etc... I think reframing the situation from a positive perspective can help one cope.

Still, ADHD wreaks HAVOC on my kids' in-school hours. It's very debilitating.

Honestly though... I'll take this 1,000+ over a life threatening allergy. That scares me more than I can articulate.

I understand-- which is why I said that it can be a strength in some respects. Not that it "is" for every person who has ASD, because it isn't. More that we can be open to the possibility that not all disabilities are 100% bad (as a package) or that the goal SHOULD be to eradicate the differences that make up the disability for everyone who has that disabling condition. There ARE people with Asperger's who would NOT want to become NT if they could. I have to respect that.

I'm also going to point out, here, that acknowledgment of disabling conditions' occasional/serendipitous up sides does, just as I noted, invite comparisons, just as MumOfThree has done. I presume that she was not suggesting that my family's experiences are "less like disabling" than her family's with their ASD child. I am unsure if she intended the comparison between life-threatening food allergy and her other child's dietary restrictions, but it would be relatively easy for me to take offense at that... given that I've lived with both the kind of thing she describes, and with my daughter's reality... and there is NO comparison-- in my experience. This is not to minimize-- at all-- what she has stated. Just that my experiences led me to quite a different conclusion, but that those experiences differed in other fundamental ways that neither she nor I have mentioned (or, perhaps, even COULD mention in under 10K words or so)!

But it's a very easy perceptual error to make, and one that is (naturally) incendiary, this business of "my problems are The Worst Ever, and certainly far worse than {problem I don't live with}."

Look at how my words resonated with her-- not what I said, exactly, but what she thought that I might have intended, which is to say that (which, please note, I do not believe) ASD always comes with fringe benefits, or that EVERYONE with any spectrum disorder enjoys some special abilities along with the challenges. That's very clearly not everyone's experience with autism.


Pretty much any potentially disabling condition exists on a similar spectrum, I suspect. To add complexity, individual quirks and additional diagnoses/factors also profoundly change the overall impact of a disabling condition. Another family might well find MumToThree's younger child's dietary restrictions a terrible burden... whereas she does not, because she is comparing that to a set of challenges that she finds MORE burdensome in their lives.

I know people with technically life-threatening food allergy who are really not living the same life that we do, and they are, in fact, the MAJORITY of people with food allergy. They do pretty much everything that normal families do. We don't live anything close to "normal." Our lives are, in fact, far LESS normal than life with a type I diabetic was, and less normative in some ways than that enjoyed by close friends with a trisomy daughter. They have freedoms that we can only wistfully dream about... but we have freedoms that they do not, too. It probably all comes out even in the end, and I certainly do not feel qualified to judge others. (And-- to be clear, I'm pretty confident that MumOfThree didn't mean it that way, either. I choose to think that she was referring to her own family's experiences, and not in any way seeking to minimize what others are facing.) It's a sticky conversation because we always feel a certain amount of parental guilt for our inability to "cure" our kids' disabilities, maybe even angst that we resent the limitations thus imposed on us... and we're VERY defensive about being told that we "choose" to see things that way. VERY. It's largely because we've been sensitized by hordes of people judging us from day one on this forced march. If I had a nickel for every ignorant, but sunny, thing that a friend, family member, or relative stranger has said along the way.... OY.

However, that is my point, in the end. Only the people LIVING with the person who has the condition really know how disruptive it is, and how negative/positive balance becomes within their particular circumstances.

I truly wish that were more accepted. The same diagnosis does NOT the same life make.



There is a very good reason why IEP's and 504 plans don't come with mandated, prepackaged accommodations which go with particular disabilities.

I think that the commonality between giftedness and disability is, fundamentally, the story of what it means to be an idiosyncrasy in a world which seems to value only what can be categorized and labeled and understood in sweeping generalities. That just isn't what it is to be disabled-- or non-NT.

I also suspect that SOME families do see a PG child as presenting many of the same challenges as a disabling condition-- but one which has some positive aspects. Other families don't really see it as having a negative side. (I mean, I guess-- I have trouble thinking of it that way because our reality has been so different, but I suppose that there are some families in which a PG child just "is" without any real problems as a result...)