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I. Don’t. Have. Aspergers. April 8, 2012

Posted by mareserinitatis in education, gifted, older son, personal, societal commentary.
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Today, I came across this post talking about expression of Asperger’s in women.

I have to admit that I’m understanding how my son felt in school.  When he was in 6th grade, the school decided to do an evaluation and said he was Aspie.  The whole thing was rather traumatizing for him.  He talked about how the school psychologist talked to him like he was a toddler, using small words in a loud voice.  It was very patronizing.  He started calling her the psychopath-ologist.  The next year, the ‘diagnosis’ followed him to the gifted school he attended.  I talked him into going along with it because there was help with social skills and things that he really did need some help with.  He said he was okay with getting the help.  However, he did keep insisting he wasn’t Aspie, and the teachers kept saying that his refusal to accept would make it hard for him to adjust.

Here’s the problem: he’s not Aspie.  When he was 4, this first came up.  I took him to out of town to two researchers who specialize in Asperger’s to have him examined.  Nope, not Aspie, they both said.  However, it’s obvious he’s probably gifted.  It was at this point that giftedness could probably be problematic in a normal classroom.

Given my history with the public schools as a child, this had never been a blip on my radar.  I constantly had problems, but very often I and my parents chalked this up to the fact that we were pretty much considered ‘poor white trash’.  Now I can look back and see how that perception along with my very visual approach to things confluenced to make school hell for me.

But as an adult, I keep seeing things about Aspergers.  And people keep saying my son is Aspie.  And I suspect people think I’m Aspie.  And I’m not.  I simply am not.  I am amazed at how many traits of Asperger’s are also present in the gifted, and given my experience with my son, I’m sure that there are a ton of kids out there who are being misdiagnosed as Aspie when, in reality, they’re perfectly normal…for gifted kids.

I know people who have kids who are Aspie, and I understand it’s hard to deal with.  However, I am getting really tired of this ‘medicalization’ of a gift or a personality type or whatever you want to call it.  The problem with calling gifted kids Aspies because they may show some of the same traits is that those labels become a capsule to describe the student.  So-and-so is an Aspie, and so every thing they do that seems off or quirky or different becomes a sign of their disability: there is something WRONG with them.  How many times do people look at these kids and say it’s a sign they’re brilliant?  In my experience, almost never.  By the time older son was finished with sixth grade, the fact that he had a college-level vocabulary was being used as a sign that he had a disability, and the psychopath-ologist was claiming he was actually hyperlexic.  His English teacher, who at the beginning of the year was saying she thought he was a very bright boy, suddenly said he didn’t seem gifted when asked by the psychologist.

I don’t have any issues with parents of Aspie kids, or even Aspies themselves.  However, I am really sick of how society seems to have taken a hold of this ‘diagnosis’ and turned it into a way to categorize anyone who is socially awkward, shy, or quirky.  For a lot of kids, all of their gifts and abilities are now being viewed as some sort of dysfunction that falls under the category of Aspie.

And it’s not just kids.  I’ve seen this and experienced it as an adult.  Maybe I tend to fixate on things, but I need to do that to solve difficult problems.  Maybe I feel things more strongly, but why is that a sign of Asperger’s instead of Dabrowski’s Excitabilities?  Why are all these things viewed as a problem rather than a sign of uniqueness and intelligence?  I know a lot of people view the label as a way to better understand those who are different, but it also seems like a way to write them and their gifts off as an oddity.

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Comments»

1. Aspergers Girls - April 8, 2012

I agree. There are surely children being diagnosed with ASD they do not have it. There are sure tell signs for boys. Something about the human brain likes to sort and classify. I found your blog because you linked to my blog about the Aspergers traits.

Unfortunately, with women, there are a lot of women who have many Aspergers traits that are being diagnosed with everything but Aspergers. For women who have most, if not all of the traits, and spend there whole life wondering what is wrong, the diagnosis can be a huge relief. A place to begin to find support and connection. I just figured out I was Aspie after 43 years. And figuring this out has changed my life for the better.

Aspergers isn’t a bad thing. There needs to be more education about the “syndrome.” So many people have a wrong understanding. I invite you to read the post about 10 Myths about Females with Aspergers.

With children, I wish people could find a way to get help from the school system (OT, Speech, Social Skills, Tutoring, etc.) without having a label. Unfortunately, kids who need services have to have a diagnosis. Aspergers often comes with difficulty in spacial awareness, handwriting, organization, etc.

If my son hadn’t needed huge amounts of support, including a one on one aide, I would have much prefered “gifted.” But as the journey has unfolded, we have “Aspergers” and so we set about to shed a positive light on the condition.

No spell check on my laptop, so excuse any errors.

Sam 🙂

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Ellyn ERickson - May 21, 2013

Sam, Glad to see your comment, and are aware of this difference. I follow your blog often, because my daughter has been diagnosed with Aspergers. It’s strange how many of those traits that you wrote about seem present in me, as well. It often makes me wonder when something is found in a person close to me. I continue to relate to some of your posts, and enjoy your writing. Glad you are not feeling any ‘shame’, and setting a positive light on things! Thanks~ Ellyn Erickson

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2. :( - April 8, 2012

Not my favorite post from you. The term “aspie” seems to have a negative connotation to it. It is as bad if not worse then the experiences you witnessed due to being diagnosed. I understand the frustration you must feel considering this is happening to your child, and attribute this post to that. But please consider that people you know may be savants , and could be offended at this post none the less.

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mareserinitatis - April 8, 2012

The problem I have is with the need to put people into boxes so that the rest of society can feel comfortable knowing what is ‘wrong’ with us, Aspie or not. It avoids the work of having to recognize that people are individuals with their own strengths and weaknesses. The Aspies that I know are more different than alike, and I don’t see how they all benefit from being grouped together and marginalized as disabled. It’s a reflection of society’s unwillingness to accept diversity.

I don’t think there’s anything wrong with Aspies, and I can understand why some people may be relieved to be diagnosed. But fundamentally, I think a lot of that comfort comes from having a reason why one feels different – and feeling different comes from not being accepted as you are. That shouldn’t happen to begin with.

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:) - April 8, 2012

It definitely adds to the challenge dealing with labels and preconceptions. One of the best things you can do though is exactly what your trying to do here, which is stand up for your kids. Some kids are not as lucky as yours and their parents reaction is more damaging then any preconception or label could ever be.

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3. Alexis Yael - April 9, 2012

I know your heart is in the right place, because I remember when this was first happening with your oldest son and I agreed at the time that the label didn’t fit. (And that the school system did not have a clue how to help him.)

But here, with this piece, you’re adding to prejudice against autistics with lines like this: “So-and-so is an Aspie, and so every thing they do that seems off or quirky or different becomes a sign of their disability: there is something WRONG with them.”

Maybe you are being simply descriptive. Autism is considered a disability. And certainly, this is society’s problem, seeing people who are autistic (Aspie = autistic) as different and wrong.

But that can (and should and MUST) change. The autistic self-advocacy movement is alive and well. We are working to change these prejudices.

And honestly, whether or not people are labeled, it is the perception of differentness that causes other people to see them as wrong.

Most people don’t know Remy is autistic (or that he had a stroke). And while his charming personality and extreme happiness get him a lot of slack, he STILL gets bullied at the playground. I have seen kids gang up on him and bite/ push/ pinch him. And it is because he is different. They have no clue HOW he is different, they just know he is (and they have been taught, culturally and probably in their families that different = bad).

I am not saying you are bullying. You are not. You’re my friend and I am happy for that. I’m trying to explain why I was disappointed when I read this. (And it wasn’t because I think you’re autistic, because I don’t.)

You seem to have drunk the societal koolaid, I think, in your believing that being (labelled) autistic is bad. It isn’t. It just is what it is. Giving a label gets services. Adults can need services – help – as much as kids do.

I just hope you will reevaluate your position that autism should be “(viewed as) a problem.”

We need allies, not people who drink the koolaid and thus see being autistic as a terrible thing.

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mareserinitatis - April 9, 2012

“So-and-so is an Aspie, and so every thing they do that seems off or quirky or different becomes a sign of their disability: there is something WRONG with them.”

Alexis, my point with all of this, as I responded to a commenter above, is that it shouldn’t matter if someone does or does not have asperger’s. People just need to be more accepting of differences, period. What I wrote was something that *other people think* that drives ME crazy. People make a big deal of these little things that really don’t matter.

On the other hand, I have gotten very tired of having a label attached to any behavior that doesn’t seem ‘normal’ by someone else’s standard. I don’t understand this whole need for labels. Yes, they’re handy when it comes to getting services, but I see more often that they’re used as an excuse to write people off. I’m getting very tired of labels attached to me or my kids because we’re just being who we are. When the label is helpful and brings understanding, that’s great. But that’s not what’s happening in a lot of cases, and it seems like they’ve done more harm than good.

Labels can be great to help someone understand something. But they can also do a lot of damage when you’re struggling to be accepted. It seems like they DON’T help with bringing understanding and reinforces that there’s something wrong with you that needs to be fixed. I’m not so sure that’s the case with a lot of ‘Aspie’ behavior.

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4. nicoleandmaggie - April 9, 2012

” How many times do people look at these kids and say it’s a sign they’re brilliant? ”

I would actually disagree with this statement! In the math world I used to inhabit, students with Aspergers MUST be geniuses, because math geniuses are all socially different. People like my college roommate who were only normal gifted weird but actually genius were thought of as less genius than the guy who would recite pi to several hundred digits. (In middle school the diagnosed Autistic guy I did accelerated math with people thought was a genius as well, but really he was smart, but not genius.) I do think the focus aspect that often comes with Aspergers helps with doing math, but that alone isn’t enough to make someone a math genius.

I agree with the above folks that diagnosis of syndromes is important for treating the negative aspects of those syndromes, and that’s as true for giftedness as it is for Aspergers as it is for PCOS. But labels themselves can be dangerous if misapplied as in your post, or if they have negativities unfairly attached to them as the other commenters are saying.

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mareserinitatis - April 9, 2012

And my point was that labels more often than not do have negatives unfairly attached. My son probably suffered more for having this label attached than he benefitted from the services he received. It certainly made him angry and resentful. He really didn’t want to be treated differently. I think the thing he really needed was understanding and guidance, and I’m not sure why people think they can’t provide that without first putting a label on someone.

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5. Alex - April 9, 2012

As someone whom a psychologist deemed a “mild aspie” (paraphrased), I’d say that I definitely agree with the “I don’t see how they all benefit from being grouped together” sentiment that you express.

It is definitely the case that I tend to process things differently than “typical”, however specific labels such as that have very little point since there is plenty of individual variation anyway. I would say that schools treating people with such a label any differently is a counterproductive mistake.

I went through high school in a “gifted and talented” program, and well, I would say it was a positive experience overall, but primarily because those of us in it were less bound by the normal “schedule” of what classes are in what year of the school system. I think things would be better off for everyone if educational systems offered similar flexibility for cognitive diversity without needing to group people or label them.

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6. It’s not easy being…gifted. « FCIWYPSC - April 10, 2012

[…] left a comment in yesterday’s post that said: I agree with the above folks that diagnosis of syndromes is […]

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7. Flanigan - September 26, 2012

Oh thank God, someone normal. *clings to* I have experienced this since I was sixteen, back when ‘Asperger’s’ wasn’t very well understood. I was ‘diagnosed’ badly and wrongly, and was stigmatized for it, even though I’m not shy, awkward, or have obsessions with one part of an object. And honestly, ladies, I’m a girl, and so saying that women can’t get a diagnosis is just simply wrong. Perhaps some of you can’t, but my doctors couldn’t wait to hand it to me.

I knew there was something wrong with the diagnosis since it was first told to me, and it was told is a very nice way, by a very nice doctor, but he was simply wrong. I have been to subsequent doctors, and they have all diagnosed me, and are shocked when I say I had an Asperger’s diagnosis.

Thank GOD someone gave me my real Bipolar diagnosis before I committed suicide.

But the Asperger’s diagnosis has haunted me ever since. You can’t get rid of it. My whole large family is in denial, and wants to say I have it, they’ve even had my poor little cousins, my brother and several other members of my family ‘diagnosed’ with it because of me, and my shoddy diagnosis. You have no idea how guilty I feel about that.

It’s horrible people saying ‘you can’t do this’, ‘you can’t do that’. I stopped talking to people for four years because I thought that my expressions must have just simply been ‘wrong’ all these years.

I’m just so angry about this. This stigma and fad diagnosing of Asperger’s needs to go away.

Also, I find the term ‘Aspie’ to be quite derogative. *winces* Sorry, but I see it everywhere nowadays.

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8. Jon - November 9, 2012

Thank goodness people are beginning to voice their misgivings about this diagnosis and the way it is being bandied about!

I have been unofficially labeled as an AS person by my sister simply because I am intellectually curious about subjects she cannot understand or relate to. I am not talking about bizarre obsessions, like an all-consuming devotion to the history of doorknobs or a massive collection of remote control buttons under the bed. I am talking about taking interest in the world around me, in history and music and art and architecture, and in short all kinds of things the world is made of.

Yet it seems that even perfectly innocent things like that are more than enough to set off the “alarm bells” of those versed in the lore of Asperger’s syndrome and to send them babbling about “unusual and narrow interests.” I am so sick of hearing about it, of being made constantly to think about the vapid silliness of it, that I get angry every time I hear the word Asperger. What on earth is happening in a culture that labels individuals as medically abnormal for no more than having hobbies or interests?

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9. Ellyn ERickson - May 21, 2013

you told your son to go along with it, at his new school? Did it help him, or you? Just curious.

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