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

New Psychology Today article, "Gifted Should Not Be Confused with Mental Disorder." http://tinyurl.com/giftednotdisorder

Interesting article, thank you. This quote really spoke to me - we are treating our DD for ADHD because SHE is suffering, we get so much flack for it from her school because they see ADHD as a problem that effects everyone else as much or more as the child in question... She's not bothering anyone else, ergo we are abusive to treat her. SHE is the one that is most effected by her ADHD.

Thanks so much for posting this, Mark. I'll be adding this to my "ammunition" I use to keep my kiddo from getting labeled inappropriately.

Awesome article--thanks so much for posting and to SENG for sponsoring, and of course to the author! I really hope this school of thought becomes more prevalent--one would think the 37% number in itself would be a wake-up call.

By the way, I was daydreaming about a related article, if anyone wants to write it feel free--something like, "Where would Bill Gates (/Mozart/take your pick) be today as a 9-year-old? Drugged up and counseled out?" ("Counseled out" is the term given by some to the practice in private schools of advising a student and family that their 'needs can no longer be served,' or to put it more honestly, the school just doesn't want to deal with you any more as a student). I actually don't know if Bill Gates had trouble in school, but I would imagine that a number of highly intelligent, highly successful adults of today had trouble in school but by virtue of growing up 20-30-40 years ago were not diagnosed and/or drugged. I think it would be interesting to find out, and would like to read an article by somebody else about it...please!

Thanks again for the post.

"Caution is particularly necessary in diagnosing kids. They are so developmentally labile and have such a short track record that diagnostic mistakes are frequently made and once made are extremely difficult to undo."

I must say, this is the kind of thing that paralyzes me as the parent of a child who sort of appears to have this/that issue, kind of, but does she, or is it...?

I'm all for caution; but IMO the risk of under-diagnosing is about equal to that of over-diagnosing. And I don't know how hard it is to lose a diagnosis that proves to be erroneous; I suspect not as hard as trying to get services or help without a dx.

DeeDee

You could "lose" the diagnosis, but you may not lose the altered way that people perceive you, from family to teachers to friends. There is also the danger of constantly attributing behaviors or problems to a diagnosis when they may be attributable to another outside cause.

If you need services in school, then you need them. At present, my child is functioning very well in school with no services. Could things be better? I don't doubt it, but things could be better at school for lots of children. Actually, my other child, who has no diagnosis and no possible likely diagnosis that I could imagine (other than giftedness) is the one who is miserable at school!

I think it depends somewhat on the diagnosis. We had and then lost an ADHD diagnosis, but it apparently will be in DD9's 504 forever, and we will forever be asked if we have any plans to medicate her for her nonexistent ADHD.

[quote=Dbat]By the way, I was daydreaming about a related article, if anyone wants to write it feel free--something like, "Where would Bill Gates (/Mozart/take your pick) be today as a 9-year-old? Drugged up and counseled out?" ("Counseled out" is the term given by some to the practice in private schools of advising a student and family that their 'needs can no longer be served,' or to put it more honestly, the school just doesn't want to deal with you any more as a student). I actually don't know if Bill Gates had trouble in school, but I would imagine that a number of highly intelligent, highly successful adults of today had trouble in school but by virtue of growing up 20-30-40 years ago were not diagnosed and/or drugged. I think it would be interesting to find out, and would like to read an article by somebody else about it...please!

Not quite a scientific article, but it is a nice article.

www.nextstage-edu.com%2F2013%2F01%2F16%2Fspecial-delivery-unwrapping-the-gift-of-adhd%2F&h=fAQF2U8xv&s=1 $

Obviously, I don't know how to quote- ha!

"The 2010 American Academy of Pediatrics Task Force on Mental Health reported that 37% of children and adolescents either meet the DSM criteria for a mental health diagnosis or show some impairment in functioning."

37% ???? What is THAT?

(So... the next time you see three kids together, think, hmmm - the AAP considers one of these kids sub-functional in some way)

Are we over pathologizing variations in normal childhood behaviour?

Sorry, I know this is slightly off topic as it's not specifically related to giftedness, but that paragraph really irritated me.

(Good article otherwise.)

I don't know, parenting has been one big lesson for me in "there are a million things that are super rare - but there are so many of them that bad things happening are really pretty common" including physical and mental health problems. 37% seems higher than even I would hbe thought but I do think the number would be higher than most people expect... Depression , anxiety, eating disorders, addiction, developmental disorders are just the big and obvious ones...

CCN--that's exactly it, I think, that we are over-pathologizing normal variations.

squishys--thanks for the direction; I've seen things like that about ADHD (and heard Edward Hallowell on NPR speaking very eloquently about how ADHD is a benefit to many adults), and I've also seen an article here and there about how some scientists realize they are on the autism spectrum but weren't diagnosed as kids--because back then they were just considered geeks, or quirky.

I think it's a very bad thing, and am glad some (credentialed) people are trying to counteract it by pointing that out.

This was the scary part to me. Why would primary care pediatricians be giving out psychiatric diagnoses?

Kudos to the 90% who have the self-awareness to know they're not qualified. The next step is for them to stop doing it.

Peds diagnose ADHD and other such disorders all the time.

I have a friend who is a psych professor (specializing in child development)/child psychologist. She does not prettify her views for me. While she does not really know my DD, she has persistently argued that DD is gifted and intense/sensitive and that's really all. I gave her the scores DD got on some of the instruments she took and she was highly skeptical of her being diagnosed with depression/anxiety, saying her scores were borderline at best. It's not that she disagrees that we need better tools to cope at home, but she objects to DD being given an actual diagnosis. It's certainly interesting to know a psychologist with this POV. I doubt she would be so candid if we weren't friends.

"sub-functional"? I must strenuously disagree with that characterization of disability.

In our family's experiences, having a disability doesn't make you "sub-functional"-- but it does offer real, serious life challenges that are different from those faced by people who don't have the disability.

Recognizing these challenges allows us to find and teach the skills that offer the best work-arounds-- and the best chance to minimize the impact of the challenges. It also allows us to understand and accept these aspects of ourselves, not think we're bad or lesser people because something is harder for us.

If you don't want to label your challenges or those of your kids, that's fine by me. But the choice to use a technical label is not necessarily bad, or pathologizing. It can as easily be liberating and open up a horizon of understanding.

DeeDee

In other articcles I've read I don't like seeing things like "suffering from dyslexia" or fill in the blank for a different label. But the kids who are different because of their challenges/differences know that they are different from the time they'e very little. My DD doesn't like the words dyslxia or ADHD very much right now, but she understands her brain is wired differently and that gives her cool strengths as well as challenges. I let her choose her own "label" and she has and we use that "label" (which is very positive) to discuss her challenges, strengths and her path in general. This has been very helpful in lowering the anxiety she experienced from "operating in the dark", so to speak.

There are too many things "wrong" with the labels that put parents off, like pressure to medicate, doom and gloom of the child's future, and I think having the labels stick on the records after plans have been dropped is wrong.

And anxiety in my mind is a secondary issue that comes from a mismatch between the person and the environment or not being treated with respect of having ones needs met in school.

I think so, as well.

I find it highly distressing that we seem (as a society, certainly, and maybe as a civilization) to be rushing ever faster to NARROW our interpretation of "normal" into a picture of 'normative' that is shrinking by at least 1/4th of a standard deviation each decade.

What we used to find quirky/amusing/eccentric but tolerable or at least beneficial in certain circumstances, we are now pathologizing very early on.

I find it very peculiar when that pathologizing is related to rate of development, or affective setpoint. Not everyone develops in lockstep with "average," in terms of cognition or executive function.

One size MUST fit all now, and if it doesn't, we need to label what is "wrong" with the individual before we make any allowances for the variations.


How sad. Maybe it's not that the individual is so wrong-- but that the environment has become so INTOLERANT.

Sorry if this is OT, but it's kind of related so I just wanted to mention it in case it struck a chord with anyone else--two of the psychologists we've seen have said something along the lines of, 'oh, they don't have to meet all the criteria to have' Asperger's/ high-functioning autism.' This was because I was pointing out that while we definitely see social issues for DD (under the 'A' category for ASDs in the DSM), we do not see what is described as 'B' category behaviors (kind of the obsessive/ repetitive type stuff), or at least only sometimes in a very mild kind of way that sounds very different from the DSM descriptions--and is consistent with the description of misdiagnosis in James Webb's Misdiagnosis book. But whatever--I guess the criteria are just a loose guideline in some psychologists' professional opinions?? So what does it mean to have criteria, even ones as flexible as in the DSM (i.e., pick 3 of the following....) Same thing for ADHD--and you could line up what they said exactly with the James Webb Misdiagnosis section on ADHD (i.e., that the 'symptoms' were inconsistent with ADHD). But these same psychologists, when I mentioned the James Webb book, did not respond. What gives?? On the other hand, technically I guess we never got a real diagnosis because each of their reports just said something like 'the questionnaires [from teachers and parents] indicated a [70-90% likelihood]' of DD having each of these things. So I wonder when we're talking about the 37% number are we talking about a suggested diagnosis or a diagnosis where the psychologist has said, "this kid definitely has X."

Just saying, our experience with liberal inclusion of DD--but in a qualified way--is another part of all this that doesn't quite add up for me.

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...)

HK - I was typing quickly on my phone before rushing off to something else and I absolutely was not trying to compare our situations directly, but as you said to compare my own children... The reason I pointed out that our DDs food issues are not life threatening was to try to show that I know that your family and our family's situations are different.

In fact all three of my children (and both of us) have food intolerance. Only one of us do I see that as reaching a life changing / "disabling" level, for the rest it's just a bit of a pain. Like you, most people I know with allergies, including life threatening allergies that have landed them in hospital with anaphalaxis (more than once), are still less restricted than our youngest is. They eat out, go to playgrounds, might send their kids on camp, etc. Conversely most people who know someone with an intolerance think of that person as a picky eater who will eat their intolerance foods if they really feel like it. We are as far from that as the multiple airborne anaphalactic child is from the child with one allergy that's never landed them in hospital and doesn't strain the family too much to avoid.

Likewise although I see no strong upside to my DDs Aspergers (yet!), I am equally aware that she's far better off than many many other children on the spectrum - some of whom WILL have strong upsides to go with their harder challenges...

Like you I think this is the crux of the issue:



CCN - I find my other DD, who has ADHD, outputs far more creatively when on her medication than off it. I don't know if she has more creative ideas on or off it, I suspect it's no different. But she does an awful lot more WITH those ideas while on the meds. Ideas go nowhere if you are too far off with the pixies to use them.

Back to my previous post (sorry to jump around) - I think that the reason I experience youngest DDs food issues as less disabling than eldest DD's ASD is that we know exactly what to do to keep her safe and normally functioning, and as long as we are 100% successful she is a normally developing child (well apart from the giftedness of course), we live in fear but our efforts are successful. We expend equal or greater energy on doing what we can for our eldest and it all helps - but she's still fundamentally effected by her problems in heartbreaking ways. I don't know what the right analogy is... My mother can put on her glasses and they work and she can read, drive, etc, the remediation makes her normally functioning - until she takes them off. My youngest can eat an extremely limited number of foods, but as long as we make no mistakes ever, she's ok. Our eldest struggles on a daily basis, in a way that her sisters don't, no matter what we do.

Also our youngest is barely 3, she's not yet experienced the full impact of how her dietary limitations may effect her as she grows up.

To further confuse a confusing issue... fwiw, I think so much of the perception of "disability vs gift vs something in between" depends on individual personality, and even individual personalities and viewpoints can flux over time in the same person. At least that's what I've observed so far in my own family.

polarbear

That is why i said we see no upside YET - as some of her comorbidities resolve she may see some benefits surface more... And personality and other family/home/life issues totally play a role.

My son really latched on to the dysgraphia is a gift thing. We were watching the Eides DVD and they talking about "dyslexia" being a gift and DS said "DO I have that?" And I said "no it looks like you have dysgraphia, which is dyslexia only of writing." He said "well I believe it is a gift!" He also seems to think he has dyslexia "midly"... Hey nothing like a 7 year old self-diagnosing. I told him the neuropsych should be able to give us a more sure answer about both. But his hypotonia isn't a gift at all, and he seems very keen on finding a "gift" in his inadequacies, ykim? He loved hearing about the "gifts of dyslexia" - He felt that gave the disability meaning.

My son was expressing frustration about his low working memory when my husband spoke up, "It is not a disability. We have an alternative way of our thinking, and it has gifts. Here is just one - programmers with low working memory have very few bugs in their code, because when they troubleshoot, they don't assume things are a certain way - they have to recheck line by line, and so they catch the errors."

I love that my son has someone who helps him understand he is wired the way he is supposed to be wired, and it is up to him to find ways to adapt to the things he has to deal with and to embrace ways it gives him an advantage.

I wouldn't have been able to think of a single gift from low working memory.

Hey HK--quick aside, I don't know about other disabilities, but people first language is very important to the self-advocates that I know, so they would strongly encourage "daughter with Trisomy xx". Thanks!

Totally agree. Personally, I think autism is not the source of DS's data-headed gifts at all; there's enough of that elsewhere in the family to suggest he just got an extra helping of what was already around. To me, autism is no gift-- as Mum3 points out, the struggles are constant, his and ours both.

However, I support his figuring out his own attitude-- it's his autism, not mine-- and his ability to look for and find a bright side in his very complicated and challenging life will probably help him be a happier person.

HK, I certainly didn't mean that disabilities all come with lovely silver linings. Indeed, I detest the "oh, you're so INSPIRING" business. I prefer the Buddhist acknowledgment that there is a lot of suffering in the world, to notice and live with and mitigate where possible.

I agree, HK, that all disability is personal, and yes, it would be grand if someone would ask what's needed to help in a matter-of-fact way without making unwarranted assumptions. We actually have some (not many, but some) folks in our lives who do that, and it is fantastic.

DeeDee

Excellent point. Most of the time, to us, she's just {Childname} and her trisomy isn't even part of how we identify her. Among the parents, of course, we sometimes share our frustrations, but those are almost invariably about advocacy challenges, not frustration with our kids' disabilities, per se.

I think that often, this is what parents are most in need of emotionally, as well-- thus the resonance of Welcome to Holland, which makes most parents cry the first time they read it.

Of course, over time, you keenly feel that maybe that kind of Pollyanna rhetoric ought to go pound sand...

but it doesn't mean that there aren't some fringe benefits from living outside the mainstream. I just wish that we had the OPTION to join the mainstream when it suits us, and we don't, of course. I'm like any other parent to a child with special needs there, I think. This, too, transcends "disability" and includes giftedness at high LOG, doesn't it? It would sure be nice to have the option to just go with the flow and be "normative" once in a while.

What I find most interesting is that so many of those benefits transcend the specifics and nature of the disabling condition... they are about stepping outside of one's assumptions as much as anything else.

Life with disability has really forced me to take off my blinders. I think that many people never realize that they are wearing them in the first place.

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...