Tag Archives: diagnosis

Not a Cure

The cure vs. not cure battle seems to be continuing to rage on. Ages ago I made a post with my take after someone accused me of not needing any kind of help, since I am against being “cured.” It seems that to some people, it’s a binary. Either we’re just fine as we are and don’t need help or treatment, or we need to be cured. The reality is, of course, more nuanced, with different individuals needing different amounts and different types of help and treatment.

So, looking at the cure stuff, it seems that there is a pretty big disconnect between the broader autism community, and how some parents think of it. See, to autistic adults, most of us see autism as an identity. As a neurology. To get rid of the autism is to fundamentally change who we are.

I gather, though, that to some parents of autistic children, they see it differently. See, autism is diagnosed by behavior. While scientists are slowly researching how autistic brains are different from neurotypical brains, it’s still an area that we don’t really understand, and we are very very far away from using that kind of information in diagnosis. Behavior is all we have. So “having autism” is, in a sense, synonymous with “being diagnosable.” Of course, there are problems with that logic, and one of the big ones – the one I am wanting to talk about here – is how some people use it for their idea of “cure.”

Basically, for some parents, “curing” their child only means making them no longer diagnosable. And making them no longer diagnosable means making them get rid of the behavior used for diagnosis. And when I think about that, well, it’s quite distressing.

See, I could probably learn to stop stimming. But it would leave me constantly tense and uncomfortable, it would eliminate a huge part of my body language, and I would have to keep a fairly significant portion of my attention dedicated to preventing stimming. Sure, it would reduce how diagnosable I am, but it would not better my life in any way. Quite the opposite.

If there were enough external pressure, I could probably succumb to not showing my sensory issues. I could choke down food that makes me gag (well… maybe. The gagging can get pretty bad). I could sit in silent agony as clothing tags dug their way into my skin. I could learn to not flinch at painful lights and noises (which, actually I did learn that one a little. It’s not a skill I particularly enjoy, and I am working on getting rid of it).

I could take intensive social skills classes. Which, actually, wouldn’t necessarily be bad. My social skills are way behind other people in my age group, and this is very much an area where I need help. As I’m pretty sure I’ve written about before, my ability to handle parties or similar forms of group socialization is approximately nil. I just can’t do it. So teaching me to handle stuff like that would be good.

On the other hand, not all ways of teaching “social skills” are about bettering an autistic person’s ability to actually interact. Sometimes they are about hiding our weirdness. Things like forcing eye contact regardless of the pain involved. Or forcing us to touch people even if it makes us feel sick or panicked.

So if my childhood had included all that kind of “help,” and somehow I learned to cope with that stuff without more or less constant meltdowns, I might have stopped being diagnosable. But the thing is, I would still be autistic. I simply would have learned how to hide my autism. And it wouldn’t even be able to last long term. As life continues, as the challenges of life increase, it would take more and more effort to maintain the facade. My ability to do anything else would diminish more and more. Eventually, the house of cards would crumble. Inevitably.

Making the autism invisible does not get rid of it. All it does is make it so neurotypicals can happily pretend it isn’t there.

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Does Sheldon have Aspergers?

I’ve decided it’s about time for me to talk about Sheldon Cooper from The Big Bang Theory again. Specifically, about how he is so completely portrayed as a stereotype of Asperger’s, yet the show never just comes out and says so. Even more specifically, about the reasons the show’s creators have given for why they are refraining from doing so, and how utterly offensive those reasons are.

This is a topic that has been bubbling around in my head ever since I first encountered it, as well as the blow-to-the-gut feeling I had upon first hearing a rough outline of the justifications for not giving Sheldon the Aspergers label. Fair warning – this is an emotional enough topic for me that I’m probably going to have some trouble writing it. Also, I am not always very good at unpacking and explaining why something is problematic and/or offensive, and I’m not sure I am going to have all the words I need to do it justice or fully explain my feelings. Still, I am going to try.

So basically, apparently lots of people have questioned whether or not Sheldon has Aspergers. Enough so that there are multiple articles out there talking about it, and the show’s creators have talked some about why they have not and will not give Sheldon that particular label. The problem is I happen to find all their reasons deeply problematic and offensive. I figure I’ll just go over them and try to unpack their problems in no particular order.

Number one on the list is that if he’s afflicted with a real disease, how can his friends mock him the way they do? [link]

Alright, if that’s what they are going to declare “number one,” then that’s where I’ll start. The first problem that jumps out at me is the fact that they call autism a disease. Autism is NOT a disease, not at all, and it is incredibly offensive to call it that. Autism is a condition, a syndrome, and can also be termed a disorder as well as a developmental delay. It is not, not at all, a disease. A disease is something you have. Something that happens to you, but is separate from who you are. Autism is a difference that is there from the start, and will always be there. It is about how I think and view and interact with the world. For me, and many others, it is an identity.

However, there is another matter deeply problematic in this statement of theirs. One thing more or less everyone I come across in the autism community agrees on regarding Sheldon Cooper is that the Sheldon jokes (very nearly all of them) are autism jokes. Some of us find them funny, others of us find them offensive, but all of us recognize them for what they are. So when I read that sentence up there, it sounds to me like they are saying they want to mock autism and make autism jokes (because, you know, that’s exactly what they’re doing), but they don’t actually want to admit to it. Personally, I am not in the least bit impressed with that. I would much rather people just admit that they are making jokes about Aspergers rather than look away and deny it because, I don’t know, they might feel bad if they own up to what they are doing.

Our feeling is that Sheldon’s mother never got a diagnosis, so we don’t have one.

Well that doesn’t make any sense at all. It does, however, reflect some ignorant attitudes I’ve seen around occasionally, that seem to assume that Asperger’s has been on the books as a diagnosis more or less forever. In reality, Aspergers only made it into the DSM in 1994, and even then it was fairly obscure. It wasn’t until 2000 or so that it really started becoming a thing. Occasionally I encounter people who believe that if someone did not get a diagnosis in childhood, that must mean they weren’t really challenged and thus their perspectives as adults don’t mean much. This is very far from the truth, and I imagine many adults who are being diagnosed today would have been diagnosed as children, had it been known. Sheldon’s mom not getting him a diagnosis means *nothing whatsoever.* That particular justification sounds, at best, like a bad cop-out. At worst, it sounds like an echo of the harmful attitude that people diagnosed in adulthood must not have had significant problems as children.

Instead of the writers having the freedom to make Sheldon as anal and nerdy as they like, they would be constrained by the nature of the ailment.

Parsons and the show’s writers have very carefully avoided labeling Sheldon as having an ASD, because they’ve said they don’t want to be limited by what an autistic person would or wouldn’t do. [link]

Ok, I’m going to address these two together, because they are more or less the same thing, and have the same problems. Here, they are saying that if they actually labelled him with an ASD, they would suddenly find themselves writing a personification of autism, rather than writing, oh I don’t know, A CHARACTER. As though if you give someone that label, suddenly EVERYTHING they do is about that label or comes from that label.

It’s like they’re saying they would do exactly what ada hoffmann asks writers not to do in her livejournal post here. When you write about autism, there is absolutely no need to reduce the autistic character to only autism, or (even worse) to only the deficiencies of autism. In fact, it is it is a fairly horrible thing to do, because it denies us our humanity, our agency, our flexible, dynamic, and incredibly diverse selves. That is not ok at all. Labelling Sheldon with Aspergers would not suddenly limit him, and it is not ok to act like it would. It really says something about what they think of those of us on the autism spectrum – and what it says is nothing good.

As for “limited by what an autistic person would or wouldn’t do,” well that’s an interesting statement. Exactly what limits are those, anyway? Ari Ne’eman is a white house appointee, and founded the Autistic Self Advocacy Network. Alexis Wineman was Miss Montana and made into the top 15 for Miss America. Jessica-Jane Applegate won a gold medal in the paralympics. If you browse through ThAutcast’s facebook page, you’ll see autistic musicians, autistic artists, autistic people who play any variety of games, autistic people with intellectual gifts, the list goes on and on and on. Tell me, what exactly are these limitations on what autistic people “would or wouldn’t do”?

In reality, there is no reason that Sheldon would lose anything if he were labelled with Aspergers. Not unless the writers decided to do so, and if they did it would ENTIRELY be something they chose to do. Not something they were forced to do because of the label.

But by not defining Sheldon, they’ve inadvertently captured an important aspect of autism, which is that the disorder has common tendencies, but flexible boundaries.

No. Well, yes in that they are showing that “the disorder has common tendencies, but flexible boundaries,” but it is not at all *because* they did not define Sheldon. As I said above, they could still do so if they said he had Aspergers. In fact, it would be incredibly offensive (and downright wrong) if giving him that particular label changed any of that. And really, the author of that quote admitted, right in that sentence, that labelling Sheldon as being on the autism spectrum would not (or at least should not) have lost that aspect of autism.

Not unless the writers decided that they would do it that way. Which would be predictable, but wrong.

In the writers’ minds, calling it Asperger’s creates too much of a burden to get the details right. [link]

You know what… at least this one is honest. Everything so far has shown significant ignorance about Aspergers on the part of the writers/creators, to the point of being really quite offensive. Clearly, they do not know Aspergers well enough to be able to write about it, if they actually believe all the things I talked about above. While I am internally facepalming about their worrying about “details,” there is no question that they would at least need to learn enough to rid themselves of their misperceptions and prejudices. That said, I am disappointed with their decision, as well as their attitude that it would be a “burden” to learn even the basics of autism.

Personally, I would love to see Sheldon get diagnosed with Aspergers (or other ASD). It would not at all need to change the way he is portrayed, nor would it need to reduce him to “autism traits.” He could be just as eccentric, dynamic, and funny (or offensive, depending on your point of view) as ever, with all the randomness he sometimes has.

And really, this post is not purely about the fact that the creators of The Big Bang Theory have said offensive things about Aspergers in their justifications to not label Sheldon. They have simply expressed the same misinformation that already surrounds us. The fact that people seem to so readily accept their justifications just further shows how far the ignorance goes, which is a big reason why I wanted to write this. These attitudes and beliefs are wrong. They are offensive. And they need to stop.

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1 in 88

Apparently the CDC recently released a study claiming that now 1 in 88 children have autism.  I’ve been seeing a large number of articles and blogs about that, with lots of speculation as to why it could be happening.  The answers seem to largely be split between “better testing” and the usual conspiracy theorists talking about vaccines or “toxins” or other such things.  I did, however, find two articles to be particularly interesting.

This article was one that I found talking about the issue.  There was one particular sentence towards the end that really jumped out at me.  “[The CDC] checked health and school records to see which children met the criteria for autism, even if they hadn’t been formally diagnosed.”

Maybe it’s just me, but that seems very, very odd.  Health and school records do not a diagnosis make.  Instead, what it seems to be is that 1 in 88 children might have an autism spectrum disorder, but it does not seem at all reasonable to treat that statistic like an actual fact, given how it was achieved.

This brings me to a blog post I found talking about the issue.  In it, a parent of a child with a developmental delay (DD) cautiously speculates that maybe an increasing number of children with DD might be getting lumped in with autism, even if they don’t actually fit.  Why might this be happening?  Well, there is a lot of overlap.  They can look superficially similar, and it can require more careful testing to determine what is actually going on.  Even worse, parents have incentive to diagnose their developmentally delayed child with autism, regardless of whether or not it’s accurate because apparently right now autistic children get better support and more services than children with other developmental delays.

I was actually rather shocked when I read that last article.  Not just because of what it said, but because I realized that in my ponderings on Asperger’s and autism, thoughts of other DDs had never even crossed my mind.  I like the idea of neurodiversity and autism pride and celebrating differences and all that stuff, but how can I champion neurodiversity while privileging ASDs above other forms of DDs or neurological differences?  The answer is – I can’t.  Yes, my personal focus is Asperger’s because that’s what I have, but I can at least keep in mind that there is more to neurodiversity than autism and NTs (neurotypicals).  April is autism awareness month, which I’m sure is a good thing for many people, but I think for me it’s also a good time to remember that there are other things that also deserve awareness, and they seem to be getting lost in the noise.

All of which leads me to speculate if maybe the people doing that CDC study were unconsciously privileging autism as well – lumping children with overlapping symptoms into autism, even if they fit something else better.  I guess that’s another way of saying that I’m not so sure I trust this 1 in 88 statistic.

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DSM 5

This has been on my list of things to write about since I started my blog, but I’m kind of intimidated to write about it.  Plus, it’s a topic that I honestly don’t really know what to think of, and I haven’t properly managed to form an opinion yet.  Also, I apologize ahead of time for the fact that this post is not going to be fully cited – I’ve been reading articles for months, but have failed to save the links and now I can’t seem to find them again.  hrmph.

So, as you may or may not know, a new version of the DSM is due to be coming out in a few months.  The entire process has been surrounded by controversy right from the start, with a large number of people unhappy with how it’s been handled, both generally and regarding specific things.  One of those specific things is the fact that a number of disorders are now going to be consolidated under the “autism spectrum disorder” umbrella, which will have one set of criteria.

Reactions have been varied, but largely negative.  Some people fear that many people will be excluded and will thus not have access to services they need (and others disagree).  Some people fear that having it all lumped together will cause those on the more severe end of the spectrum to be even more invisible than they already are.

I have a hard time figuring out where I stand on it.  Once I was diagnosed, I finally allowed myself to really start researching into Asperger’s syndrome (AS).  I learned very quickly that information about AS was often blended together with information about autism.  Shortly thereafter, I learned that the reason for this was because the line between AS and autism was blurred and confusing, and no one seemed to be entirely clear on where it was.  I have heard a number of different ideas (some say the difference is in language delay vs not, other people in whether or not there is a desire for social contact, etc) but always with the idea that at best, it’s a rough, general distinction.  I cannot directly speak for diagnoses like PDD-NOS or childhood disintegrative disorder, but I would not be surprised if the same thing holds true for them as well.  So it seems clear to me that the distinctions are flawed and as such, probably not very useful.  Plus, people have already been referring to all these diagnoses together as autism spectrum disorders (ASD), so making it official could be useful.

On the other hand, we are talking about a very broad spectrum, which contains people who are very low functioning and people who are very high functioning.  I have a hard time with the idea that one set of criteria will cover everyone.  Plus, people with different levels of functioning will obviously need different services.  I wonder how having only one diagnosis will change how services will work.  I can see the argument that lower-functioning people will have a harder time getting much-needed services, simply because the diagnosis of ASD will not indicate how severe they are.  Will there be a concept of trying to indicate where people are on the spectrum?  Will diagnoses include functional severity ratings?

Ultimately, I don’t think I can form an opinion until I see what happens.  I have always been rather bad at prognostication, so I’d rather gather more data than forecast doom and gloom based on speculation. Though I will admit, on reading over the proposed new criteria, it is rather a relief to me that I would still qualify.

And hey, look at that.  I managed to find most of my links!

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My childhood

This is going to be a somewhat more personal post.  Shortly before I went for my assessment, I talked to my dad a few times about the fact that I was doing it.  Among other things, he also informed me that my childhood did not match up with what he read about Asperger’s, so if I have it, it must be “adult onset” or some such thing.  Yeah, there’s no such thing as adult onset AS.  It’s a developmental disorder.  Of course, he also only bothered to research for one day, and informed me that he wasn’t able to find any information about AS beyond someone trying to sell a book, so I’m not sure how he wound up so convinced that nothing showed in my childhood.  In any case, it’s something I’ve been feeling defensive about ever since (yes, my dad can still have a significant negative emotional impact on me.  I’m working on it).  So I’ve been slowly putting together notes on what I remember of my childhood that does indicate AS, and I figured I’d write a post about it.

1. I can recall, quite distinctly, that I struggled with metaphors.  I can remember asking my mom was “read between the lines” meant and not getting a satisfactory answer.  In fact, it took me years to figure out what that phrase meant.  The explanation “read what isn’t written” just relies on more metaphors and is not helpful for a person who needs a literal answer.  I still struggle with metaphors, by the way.  I have no idea how people can have intuitive understandings of them, largely because I don’t have that intuitive understanding.  At all.

2. I did not make eye contact.  Ok, confession time.  I have trouble knowing if people mean “looking at someone’s eyes” or “looking directly at a person” when they say “eye contact.”  That said, regardless of which they mean, I tended to lack it.  In fact, I lacked it so much people would scold me for it.  Eventually I learned to force myself to look at people despite my discomfort, and sometime after that I learned to force myself to look at faces.  I still don’t look at eyes if I can help it.  Anyone’s eyes.  Not even my boyfriend’s eyes.  I think they’re brown, but I’m not sure.  As it is, I am only comfortable looking directly at people if I am very comfortable with them as people.

3. Also from a very young age I engaged in a lot of black and white thinking.  I can remember seeing a therapist when I was quite young who told me I thought in black and white and I needed to see shades of gray.  I had no idea what she was talking about, as the spectrum involves colors and I’m not color blind.  It took me a while to figure out that it was a metaphor for absolutist thinking, and far longer to start recognizing how I engaged in it.  In any case, it was a lifetime thing.

4. Directly related to the last point – I viewed anything I did or made as only having two options of success – it was either perfect or it was horrible.  Any error, however slight, meant that it was worthless.  This is another issue that I still struggle with that definitely stretches way back into my childhood.

5. Also mentioned above – I was seeing therapists from a very young age.  Even as young as elementary school.  Clearly, my mom knew something was off about me.  However, no one figured out what it was, so I just bounced around therapists on and off and no progress was made.

6. I was, and am, very literal.  To the point that I can remember once being scolded for it.  When I was very young, my mom did the usual mom thing and told me to not talk to strangers.  So I did what she told me to and refrained from talking to strangers.  At all.  It turns out what she meant was that I wasn’t supposed to run off and start conversations with random people.  If a stranger simply said “hi, how are you?” while she was around, I was still supposed to reply.  Not knowing that, I said nothing any time a stranger addressed me at all, and my mom gave me a minor scolding for it.  As can be predicted, I was mostly confused.  It’s hard for me when I get in trouble for doing what someone instructed me to do.

7. I had trouble with playing pretend, though apparently there was an exception for that when I was playing with my brother.  I can remember trying to play the way I saw other people playing, like having imaginary friends or tea parties with their stuffies or some such.  It never worked well for me.

8. In middle school, I wound up with an ED diagnosis.  As it turns out, at about the time that happened (late 80’s, early 90’s) it was not uncommon for people who turned out to have AS to be diagnosed ED.  Once again, it was very obvious that something was wrong.  It was not so obvious what it was, since nobody knew about AS yet.

9. In school I was bullied.  A lot.  Badly.  Well, maybe not TOO badly as I was spared most of the physical violence you hear about sometimes.  Still, it made school very horrible for me.  Needless to say, kids tend to target those who are different, and those who are vulnerable.  I was both.

10. Even as young as kindergarten, I had few friends and a great deal of difficulty in socializing.  I was socially ostracized by all but a very small number of people in elementary school, and as the years passed that number of people dropped, basically to 1.

11. I had tantrum problems.  For me tantrums were never about manipulation, despite that accusation being leveled against me.  They were meltdowns, and they were about feeling overwhelmed and/or triggered.

12.  People seemed to have a difficult time reading my emotions.  For example, once when young (elementary school aged, I think) I was entered in one of those childhood beauty pageant thingies.  Mostly I remember not understanding what was going on in the time leading up to it, when there was clothes shopping and explanations as to what I was supposed to do.  Then it was time for the pageant itself, and I absolutely froze in terror.  I managed to mechanically walk to the different points on the stage, but I wasn’t able to make myself to the pirouettes and such things as cute little girls are supposed to do.  Afterwords, I was informed that I was angry.  None of my protestations or explanations that I was afraid were heard.  Looking back, I view that as a rather significant example of how I apparently projected my emotions incorrectly.  I have another example or two, but this paragraph is getting long.

Having now written that list, I think overall it does indeed add up to indicating AS even in my childhood.  I suspect that if AS was known then as well as it’s known now, I would have gotten a diagnosis in either elementary or middle school.  And now if my dad tries to tell me that I couldn’t have had AS in childhood, maybe I can reference this list.

ETA:  Oh! I thought of another one!

13. I had incorrect facial expressions while young.  I do not remember if it happened all the time or if it’s more that my expressions were erratic (probably the second one), but I know it was a thing.  At one point, someone scolded me for having incorrect facial expressions and pointed out that I was smiling while angry and frowning while happy.  My initial response was anger – how dare this person tell me that my facial expressions are wrong!  They’re MY expressions!  Eventually I figured out that facial expressions serve a communicative purpose so it was counter productive if they substantially differed from the norm.  So I put a lot of effort into correcting it, but I still sometimes lapse if I am particularly tired or particularly stressed.

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Diagnosis

When I peruse forums for AS/ASD, I see the subject of diagnosis come up frequently.  People are wondering if they should get one, if it’s worth it, what’s the bother, and so on and so forth.  I figured I would go ahead and be very opinionated on the subject.

My basic thought process is as follows: DIAGNOSIS IS IMPORTANT!

Ok, so that is simplistic.  The reality is more nuanced, and I get that.  First of all, I don’t believe in self-diagnosis.  Most of us are not people who work in the mental health industry who are qualified to diagnose ASD.  Those of us who are should probably still not diagnose themselves, under the basic idea that one should never diagnose oneself, and we are too close to the problem.  So until there is an official diagnosis given by someone qualified to do so, it is impossible to know for certain if we are right.  As I have mentioned before, I suspected that I had AS for 12 years before I got diagnosed.  The entire time, I was very strict with myself about this.  I never knew for certain.  I suspected, with varying degrees of certainty and/or denial, but I never, ever let myself be sure.  In my highly opinionated way, I think everyone should do that.  I could have been wrong.

All that said, diagnosis, especially for people who aren’t children anymore, is kind of a big deal.  I don’t know much about what diagnosing children is like, so I’m not really going to talk about that, except to say that it’s very, very important.  That said, if you are an adult, it’s a bit different.  Getting a diagnosis is time consuming, expensive, and stressful.  Often it requires the involvement of parents or other family members, to lend a perspective on your childhood.  Plus, it’s difficult just to find a place to do it – it took me years and a rather fortuitous turn of events for me to manage even that much.  So in reality, it’s probably only worth going through all that if you actually have some reason to really want to know for sure.  For me, 12 years of suspecting but not being sure on top of a lifetime of being odd in lots of different ways and not knowing why on top of various functional difficulties made it worth it.

I guess the only big thing is that I get a little tweaked when someone who is self-diagnosed says “I have AS.”  But I suppose that’s my issue, as much as I am convinced I am right.  ^_^

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