I've blogged the above in full over at The Biology Files, but wanted to add in a few even more personal observations here.
Our oldest son is diagnosed with Asperger's. He received this diagnosis at age 3, almost 4, when we lived in San Francisco. There wasn't any effort to "get" the diagnosis for school; in fact, TH was referred by a speech language pathologist who had done screenings at his preschool. We always knew that he had significant deficits in social interaction and some other clear oddities, and the Asperger's diagnosis--or "high-functioning autism"--was an obvious fit, as he was using language "on time"--not pragmatically, but the words were there. If there's one thing that I take issue with in the diagnostic criteria for Asperger's, that would be it. It was this feature that distinguished his diagnosis from Autistic Disorder.
Our middle son has a diagnosis of "provisional Asperger's" (among other things). In some ways, he's more the "little professor" type with his literalness, tendency to monotone monologuing, lack of perspective taking, etc., while TH is more of an autie with his behaviors like flapping and echolalia. We did not seek an Asperger's diagnosis for our middle son, and he does not receive related services at school. The way IEP-related services work at our school, a child receives help for one of three reasons: (1) academic need (e.g., an aide or collaborative classroom as academic support for work the child cannot complete alone); (2) occupational therapy needs (e.g., for motor delays); and (3) speech therapy. Our oldest son received all three when he was in district, while our middle son receives none because he does not need them, and we have not asked for them. He's complicated, and his needs are not academic.
For us, an Asperger's diagnosis was not something we sought. It was something a medical professional diagnosed. And I doubt to the very tips of my toes that we have received anywhere near $50,000 a year in supports for our oldest child at any point in his schooling. Indeed, I now school him, so we pay our taxes and receive nothing--scholastically speaking--in return.
I think the thing I take most issue with in Frances' words--aside from the utter lack of citation of any supporting data--is his description of an academically able child who's "socially shy" as being the typical recipient of an Asperger's diagnosis. This description shows, in my mind, a lack of understanding--dare I say, empathy--for what it really means for a child who has Asperger's or autism. "Socially shy" comes nowhere near describing it. Based on our experiences with our sons and what we know for other autistic people, the kind of anxiety they feel in new situations or with new people is more akin to sheer, unadulterated terror. I know that is how my sons react.
Only today, we took our middle son to meet the social skills teacher. He was almost paralyzed with fear and anxiety. He barely spoke a word. He never once looked at his teacher. This isn't just "socially shy." It's paralytic anxiety, and my children have it in every single novel situation--and often even in more familiar scenarios. In other words, it's more than "shy," and it's debilitating. In my mind...and in the typical lexicon of "mental" illness speak...that qualifies as a disorder, not just some kind of eccentricity.
56 comments:
I'm one that wishes Asperger's and Non-verbal learning disorder would be completely removed from the ASD dx not added to it as they are pretty much doing with the V.
Put my elder (11 - NLD), their cousin (12 - Aspie), and the younger (9 - severe, non-verbal autistic disorder) together and you get 3 completely different children and very obviously 3 completely different set of difficulties, issues and limitations. It's truly amazing to see and very, very obvious to everyone.
I am going to admit, I deliberately went and changed my elder's dx. 2.5yrs - mild PDD, 3 yrs - s/l delayed with global delays, 6 (after 18mths of pushing the medical system to do it) - a mild form of ASD or orally to his mother - NLD w/ s/l delay. Why?? b/c I could not get services before Gr 3 - per the school - without the word "autism" in the dx. Nothing else gave him the label of "exceptional". Have I removed it... No. The psychometrist offered to at the beginning of Gr 4 and I said "not a chance" nor has the school pushed me to do so. They can see the results of appropriate services and understand the need for them.
Will I ever... probably at Gr 8 heading for highschool it'll get changed to NLD. He should be able to handle general level courses with little help. Then if he wishes he can go to college or move to advanced to go to Univ.
I found the article I read about this Allen Frances guy a bit worrying as well.
My daughter has Aspergers, and she does have it. She's homeschooled so it had 0 to do with the school system and everything to do with her difficulties and needs.
I'm a bit uneasy about Aspergers being removed from the DSM-V but I'm not completely clear on how it's all going to work.
Ever since I started being open about being autistic, I've had people say "oh you're just shy" or "everyone has those problems" and even say that I have no disorder at all and am just like everyone else. And yet these same people continue to get angry at me for being unavoidably autistic. It's bewildering.
I'm mostly nonverbal yet many times I have been accused of choosing to not talk, or just not trying hard enough. A few people even claimed that I had just not met the right "guy" as if the "right" relationship would make me able to speak where all my own efforts failed.
In both those scenarios, it's as if people begrudge me the "convenient excuse" (of being autistic). I suppose they fail to see the incapacitating level of difficulty that goes along with having such a "convenient excuse". I just ignore those reactions because I've learned that no proof is good enough to such people, nothing can make them understand that it isn't an excuse.
I'm curious. How was your son diagnosed with AS at 3? That's almost unheard of. Deficits in communication and social behaviors aren't typically noticeable at that age.
I am an adult with AS with an early history of being diagnosed with mental retardation.
I should say that deficits in communication and social behaviors is not typically noticeable for AS at the age of 3. If your child had autism that's about the age they would be diagnosed today, but Asperger's Syndrome is not typically diagnosed until much later.
It was an interesting confluence of factors. First, I've noted here on the blog that TH meets all of the diagnostic criteria for regular old autism *except* for the language use at the "typical" age. I've also noted that his use of language was anything but pragmatic...we always had trouble trying to get him to use language as communication, rather than as regulation. Still do.
TH was evaluated, as I said, at his preschool in spring 2005 by a speech-language pathologist, when he was 3, about two months from turning 4. As I noted, we'd already become acutely aware of his severe social deficits--as did most children in social situations within a few seconds of encountering him. It was simply that obvious. The SLP immediately referred him for evaluation by a developmental pediatrician, who diagnosed him. As I said, with the exception of the language issue, he'd've met the DSM-IV criteria for autism...and still would. It's one reason I think that our middle son is the "true" Aspie...his deficits are becoming more and more clear, and he just turned 8, the more common age for that diagnosis.
So...is our oldest one of the overdiagnosed Aspies not because he walks a fine line between "normal" and atypical but because of an error in the criteria based on the assumption that ANY language use at the "correct" age qualifies as communication? Maybe so.
Also, I don't think that's almost unheard of now that practitioners are more aware. We happened to have been in San Francisco at the time, where awareness was comparatively high.
Aaaand...3rd post in reply...I think that had TH been born in the 1970s, he'd have been tracked early on into special ed and received a classification similar to your historical one.
Anon - my son was flagged for possible autism right at age three because his social behavior was so noticably deficient and his use of language was ridiculously factual. He couldn't tell us if he was hungry or if he had a thorn in his sock (would have violent meltdowns instead) but could tell us everything we ever wanted to know about driving cars and rules of the road.
We have only the educational diagnosis because at this time it meets G's needs. We waited for our team to finish their certification in administering the ADOS before getting G's official ASD label at 5. They also administered the GADS eval (and maybe one other I don't remember anymore) to determine that he has Aspergers. This is unusual for school systems, they usually just want/give the ASD label, but G is almost stereotypically Asperger's.
Great post. The trivialization of intense, pathological anxiety as "shyness" really got to me too. I wrote about this today also, although I don't have much to add to what you said. I loved your Biology Files piece also.
As is true with so much in the neurotypical world, much of the trouble with these diagnostic categories is that they are based on "behaviors" rather than on true insight into the sources of those behaviors. Being academically gifted and shy pretty much described how I came across in public as a child, but it didn't even begin to scratch the surface of how I felt, and it certainly didn't address all the many reasons that I acted as I did. The kind of dismissive talk that comes from people like Frances is a large part of the reason that many, many girls do not get diagnosed and end up living with a tremendous amount of overload, anxiety, self-loathing, and loneliness well into adulthood. I'm glad the Asperger's diagnosis is around, and I'm also fine with it being included under the umbrella of autism in the DSM-V. Without it, many of us wouldn't understand why we are the way we are, and we wouldn't be able to take care of ourselves and use our gifts wisely.
Sarah...that's a great way to describe it. It was a trivialization of intense, pathological anxiety. His entire attitude seemed to be one of depathologizing problems that meet the standard of pathology by the usual definitions.
Rachel...good point. We were watching the Temple Grandin biopic the other day with my nieces and nephews, among others, and there was the scene at the Christmas party when she retreats to her bedroom for a meltdown. I said out loud--and probably should have kept it in my head--"That's how Aunt Emi feels all the time inside." Oops. I'm sure now that they are planning to stay far, far away from Aunt Emi. (I'm kidding...we love each other). But the thing is...you do spend a whole lot of time just trying to maintain around people. It's just hard to do, and I think girls pull it off quite often.
This is where I struggle. Sometimes Charlotte strikes me as a shy girl. According to her teachers, she doesn't stand out from her friends. She has minimal, simple accommodations on her IEP (which are probably what's effectively making her not stand out from her peers).
Other than in language acquisition, Charlotte has never been obviously different. She has never appeared to deeply and painfully struggle with immense challenging issues. Her social anxiety is fairly mild and probably scoots more toward shyness than true anxiety. And from experience, we've figured out how to make new situations smoother (like our recent foray back into church).
Now that her communication is mostly "normal" (she does still script occasionally), it's hard for me to say what makes her Aspie or Autie or whatever. She tends toward repetition and avoids new things, but I find neither of those to be disabling for her. Things when she was younger, like specific, unusual fears, are not in play anymore.
The thing is, I didn't scheme to get her the diagnosis from the school. They evaluated her at the end of preschool and said she qualified for services going into Kindergarten.
Sometimes I think Charlotte isn't truly autistic. But then I think - What is 'truly autistic'? What does it mean anyway? Where exactly is that line that distinguishes between ASD and not ASD.
I could imagine someone looking at Charlotte and even spending time with her thinking that we're the parents who worked the system. We're not and we didn't. It was just sort of handed to us. The school psychologist who evaluated her said our state writes the description of autism loosely so that more kids who need a little extra help get it. Is that the school scheming then? Who knows... They are eager to help her, giving her more speech per week than is written in her IEP.
Even if a parent or teacher thought we did work the system (and I don't think anyone does), I wouldn't care. I'm glad that she gets the little boosts in school that she gets. I wish every child did.
I should add that when Charlotte was age 2 and 3 and into 4 she was clearly autistic (just not evaluated for it). So it's not that she never was, it's just that the traits are a whole lot less apparent now and seem to continue to recede.
@goodfountain: I think the fact that you no longer observe autistic behaviors reinforces the point that Emily and Rachel were making: many girls learn to suppress stigmatizing behavior well enough to "pass." And until Charlotte is old enough to really understand and describe what's going on inside, or understand the long-term cost of expending all that energy to fit in, it's hard to know if what you're seeing from the outside is a shy girl or a girl who's figured out how to cope very successfully with issues that are more complicated. But the point Rachel was making, I think, is that defining autism based on observed behavior is problematic because the causes for the behavior are what really matter.
If one can hide autism, are they really autistic?
Yes, of course. Autistic people are not constantly
out of control. But the price of the huge effort
at control will be eventual dysregulation.
Me: "If one can hide autism, are they really autistic"
Emily: "Yes of course. Autistic people are not constantly out of control".
Emily, having autism doesn't mean one has to be out of control. But from my experience, one doesn't have a disorder if they can turn it off and on at will. I've never been able to do that and neither can my AD son. It is always with us, surrounds us and shapes our experience with the world.
http://www.youtube.com/watch?v=CGZ0fxuYPTM&feature=related
http://www.youtube.com/watch?v=CweQ9wHoBvM&feature=related
Even with my AS, I am always "out of control" as some might say and so are those in my support group. We cannot pass for "typical". I wonder, whom are these people that can pass for typical? How did their disorder rise to clinical significance if they can turn the disorder on and off based on the circumstance?
You know, I wonder how much sexism was involved in Frances' take on Asperger's. It's usually the girls who come off as shy and academically gifted; when the stereotypes are flying, those are not words I've heard applied to Asperger's boys very often. In fact, the stereotypes about boys seem to go decidedly in the other direction. So, given that Frances was taking in stereotypes, who was he talking about?
It's been well documented that girls tend to do be able to "pass" by studying social situations and becoming chameleons to fit them, expending a great deal of energy that might actually otherwise go into something more meaningful, like figuring out what we love doing in life, and taking care of ourselves. This does not mean that we are not autistic; it means that we present differently from boys.
There are lots of possible reasons for this. My own take is that a) girls, on the whole, are wired differently from boys and tend to be more social, and b) the society in which we live still values passivity in girls and expects aggression from boys. Autistic children are not so oblivious to social expectations as people seem to think. Far from it. I was keenly attuned to the expectations of other people as a child, and I did everything I could to meet them, which is one of the reasons that I didn't get a diagnosis till I was 50. I'm still quite sensitive to social expectations; I've just learned that I'm not always able to meet them, and that my own needs and expectations are equally valid.
"the society in which we live still values passivity in girls and expects aggression from boys"
I agree with the first part but any parent raising a boy understands the 2nd part, especially as it relates to a boy with an ASD does not expect aggression but demands the same passivity as girls. In fact, boys, and this is well documented, have not been served well by our educational institutions for many decades precisely because curriculum has been designed and implemented with the idea of passivity and anything outside passivity has been labeled dysfunctional and in need of remediation. Boys are not allowed to "be just boys". They must sit still like girls, must respond like girls (aka with social reciprocity in mind) and they must never learn kinectly.
If one is keenly aware of the state of mind of others, perhaps they have another "disorder" because that is not autism. I know some ASD females in my support group that are just as curious about other's state of mind as I am. I'm not sure how one can be labeled with an ASD if they have both a firm grasp of other's state of mind as well as the ability to turn on and off their "disorder". That to me breaks the whole category of ASD. Perhaps this is something different, like personality disorder?
Girls are probably under diagnosed. However, what Rachel is describing isn't autism from my experience.
Let's not forget that the majority of autistics that receive government disability services, including educational services have been identified as having clinically significant delays in all 3 core areas and a majority also have a cognitive disability.
Your original question, Anon, implied a
a lack of control. The ability to control a
pathology is not the same thing as "turning it off."
It takes hard work. Shannon Rosa at squidalicious.com
has blogged eloquently about how hard--and invisibly--
her intensely autistic son works at control. My
son does the same. Finally, autism is called a
spectrum for a reason, and the intensity of
different aspects of it varies considerably from
person to person.
I am spending a good, full day with my family
and won't be commenting again until tonight,
but other readers may have observations to make.
Sarah, I don't disagree that girls may suppress stigmatizing behaviors to fit in more, but I can't quite determine what behaviors Charlotte might be suppressing.
The last thing I want to do is be one of the people that's giving her any kind of message that she needs to pretend to be somebody that she isn't in order to fit in. I don't force her to do things she doesn't want to do (like play soccer). I do things with her (like attend every Girl Scout meeting) so that she will have the experience w/out being upset that I'm not there.
But then I also push her outside her comfort zone (like with attending church) because I feel like it's my job to encourage her growth. The school pushes her (week after next she has to start walking herself into school rather than the sped teacher getting her at car) because they want her to be more age appropriately independent.
Those things are scary for her. Am I making her suppress her fears and pretend that she's brave when in reality she's terrified?
I don't expect anyone to have the answers to these questions. And, Sarah, you are right that only time will tell as she gets older what's really going on inside her head.
Until then I feel like it's a bit of a guessing game. The main thing Charlotte ever tells is that she's "a little bit nervous" about doing something, and we generally try to honor that feeling, while not letting it dictate our lives, if that makes sense.
Quite a little tangent here, Emily. Sorry!
" Finally, autism is called a
spectrum for a reason, and the intensity of
different aspects of it varies considerably from
person to person."
Agreed, though I was already aware of this because others have told me thus, though I rarely see it as an adult in my community (I've been told this rather mild ASD exists but these individuals don't participate in my "community"). I wanted to interject here because I didn't think the other end of the spectrum was being adequately represented.
In case I give a different impression, I do appreciate your blog and I thank you for allowing me to comment.
Anon, what I'm describing is autism. I'm autistic, I have a diagnosis from a specialist, and this is my experience. It's the experience of lots and lots of other women, and trust me, it is very decidely *not* a personality disorder. Good grief. We're just starting to come out of the dark ages in which women on the spectrum got misdiagnosed with everything from personality disorders to schizophrenia, and it's so not fun to watch someone throw around that kind of language.
In any case, the idea that autistics lack theory of mind is incorrect. We may not intuitively understand neurotypicals, but then again, they don't intuitively us. I don't know about anyone else in the room, but it seems intuitively obvious to me that people of similar mind understand each other intuitively. I have always had a much easier time understanding other neurologically atypical people than anyone else. If the neurotypical world had anything remotely like a theory of mind about autistic people, they wouldn't spend so much time and money on research studies trying to understand us analytically. Nor would they have put autistic people in mental institutions for so long, thinking they were just empty shells.
.....I'm Anonymous, passing is not about "turning off" autism at will. Passing is hugely exhausting and usually requires lots of downtime afterwards. Passing is not about choosing to act autistic in one circumstance and not another. It's not about choice, and people who pass are always autistic. It's simply that our impairments become more obvious in certain situations, or that it becomes harder for us to pass as neurotypical in particular situations because they are so stressful and difficult for us.
Autism can be a very secret hell. I was not diagnosed until my 30's, but was not merely pressured to act NT, but systematically abused into it. My dx told me I was not insane, and I mattered as much as other humans. In my teens, I tried to broach the subject of my severe sensory issues with a psychiatrist, and found myself in a locked down psych ward for it. I'd hate for us to go even one step back toward those days.
Can I just butt in and add, I started googling Autism symptoms when my son was anout 7 months old. At 2 he was diagnosed pdd-nos, with the expectation that will change to Aspie at 3 years. A mother may notice very subtle signs from early on. Whereas some have to wait until the sledgehammer of school problems erupt before seeing the social and language deficits. Doesnt mean they were not there all along, just that they were not acknowledged. How many parents and professionals have delayed dx on the basis of labelling a child 'shy'. Sorry to sound angry here, but that just comes across to me as a flat out case of denial. You would have to be ignoring a host of other menifestations to come to the shy conclusion.
Me again..
Just wanted to add a comment for I'm Anonymous. As a social worker in a previous lifetime I worked with women, many of whom had personality disorders. I can assure you the presentation of a PD juxtaposed against an ASD personality are poles apart. Both may have difficulty managing emotions but a striking difference is that a person with, for example, Borderline PD will continually seek and create drama, whereas from my observation ASD individuals do not. This sounds like a wide generalisation but it really cuts to the heart of how ASD versus PD people experience the world, and how they learn to manage (or not manage) their symptoms. It seems to me each go in opposite directions when it comes to behavioural patterns. Another example of difference is the high levels of drug use and prison representation by those who have PDs. This again does not seem to be the case amongst ASD females. Conversely they seem more likely to pursue academic or artistic pursuits. They are also (usually) happy to spend time alone, whereas I have never met an PD woman who could spend much time without the company of others. Just a few examples for your consideration.
And let me apologise for my tardy spelling in the above post for any pedants reading :)
I am going to agree with Sarah and Rachel.
Passing is a skill of survival, I don't stop being autistic, I just wear a mask over it. The mask of normalcy is well kept lie among NTs. Underneath the guise however is an autistic person. It's exhausting and taxing. I hate passing honestly, but it's necessary for my place in NT society. As someone that is born female, I can understand the social pressures that are push upon those that are born and diagnosis as women.
Being transmale creates a new dynamic however on my diagnosis.
Sharon, you are entirely correct about the difference between PDs and autism. My mother had a PD, and she was histrionic, manipulative, always looking to be the center of every situation, and miserable without an audience. Those are not the markers of people with autism; in fact, they are in opposition to autism. I have absolutely no interest being at the center of any social situation, performing for an audience, maniuplating people, or creating drama. Even if it were in my nature to do those things, it's pretty much central to being autistic that I wouldn't even know where to start.
I would also add, that, draining though it can be, much of the ability to "pass" is based, not on the ability of the autistic person but on the propensity of neurotypicals to attribute autistic behaviors to something else entirely.
For instance, people tend to assume I'm cripplingly and overwhelmingly shy, and while that can be true in some situations, I'd say my problem is about 10-20% shy and the rest that I have little understanding and less interest in average NT conversations.
Additionally, people assume I am lesbian (an assumption I've also heard people make about Temple Grandin when they've come in partway through an interview and don't know who she is), and I've also had well-meaning people insist that I could not possibly have the personality I do unless I had been sexually abused and that I need to talk about it in order to heal. None of those things is true of me. I also often get read as hostile or depressed when I am not at all so.
So in brief, while I technically pass for "non-autistic" in most circles, what I pass for is not a completely normal, healthy neurotypical version of myself( if such could exist), but a lesbian with PTSD! Not a high-status kind of individual in our society, and creating that kind of impression wrongly *should* qualify as something of a handicap.
I've never been considered "typical" or able to be confused or hide autism. Seems to me like those that can are very lucky. I've tried but I always fail. I don't know anyone that can. Perhaps that is because those I run into, typically those in support groups and DD services can't do it either. All of you that can should be thankful.
Anonymous...thanks for posting here. You ask good questions, and your posts have opened up a great discussion. I think probably people who can "pass" are thankful that they've developed that ability. Of course, "passing" is a matter of degree. They may not draw the attention of strangers, but based on my own experience, their families and friends are likely under no delusions.
Let's not forget those that are on the other end of the spectrum in our conversations about autism. For them, they can never hope to achieve such a life changing ability. Intellectual as well as motor neuron disabilities will prevent most people, including girls id'd as ASD from ever participating, even partially, in a society that favors "typical neurology".
Please also note that the videos I supplied of those on the other end of the spectrum were ignored in the comments. We do a great disservice to people with ASD when we fail to recognize their disability, especially those on the lower end and the less fortunate.
I don't think that omission of the full spectrum from the current discussion implies overlooking them; indeed, the group you reference has been discussed. I referred you to Shannon Rosa's blog about her son, for example. Kristina Chew also blogs about her son, who has intense autism. We are aware of many families whose children engage in SIBs, etc. It's not something we're ignoring just because it's not a focus here on a post about Asperger's.
Many parents who read and post here have children who have been described as being on an "opposite" end of the spectrum, which I think is probably a false dichotomization. People who are perceived because of specific behaviors to be lacking overall are, from what I've learned, being misperceived and placed on an "end" of a "spectrum" where they are generally underestimated and their potential not realized. Indeed, I'd say that it's society's "favoring" of typical neurology that drives this dichotomy most and keeps their abilities locked away.
In sum, I know almost all of the people who have posted here, and I can assure you that no one of them is ignoring the group you describe by focusing their comments on a specific topic in this comment thread. If we ourselves do not have children with intense autism, we have close friends who do, and we do not ignore them.
I'm curious. Are you claiming that there aren't two ends of the spectrum when you wrote "false dichotomy" ?
Do you think the kids in those videos, especially the first one, will benefit from interventions and "rights" as people with AS will? How so?
How much time have you spent in autistic seclusion classrooms and severe disabled classrooms?
I'm sorry for sounding aggressive, but I've never come across someone in real life that would say there is a false dichotomy between what is considered low and HFA. At least not with people that work with both populations.
Do you think the kid in that first video has anything in common with me or anyone posting here or that there is some sort of hidden intelligence there that he has?
I haven't watched the videos. I'm not sure what "rights" you're talking about. Yes, I have spent time in autistic seclusion classrooms and other places surrounded by intensely autistic people--of course. The false dichotomy of the spectrum and reference to "high-functioning" and "low-functioning" is not something I've come up with myself; it is a topic of long discussion, as are the two terms I just used. They come into question as people discover their misapplication, especially in the population given as "low functioning."
To answer your questions, yes, I do think that children with intense autism have much in common with all other people. They are, after all, people. And yes, based on insights from parents of people with intense autism and autistic people who self describe in that way, there is potential there that is, in part, under the lock and key of societal expectations.
I do not know the child in the video, which I have not watched (I don't watch youtube videos of difficult circumstances involving people who likely have not consented to being videotaped), so I cannot speak to his having or not having "hidden" intelligence. What I do know is that we have discovered repeatedly that assumptions made based on common societal interpretations have proved to be wrong in a number of populations, and autistic populations are only one example.
"I haven't watched the videos." "I don't watch youtube videos of difficult circumstances involving people who likely have not consented to being videotaped"
I call these autistics the invisible ones, most likely the majority that Frances was referring to and whom he is trying to be sensitive to. Most people turn away when they see them.
I don't see where Frances, in that story at least, is trying to be sensitive to anyone. I didn't turn away from the video because someone in it is doing something that would be uncomfortable for me. I've already explained why I don't watch these videos. For what it's worth, I also generally don't tweet or blog or otherwise promote media around stories about specific children who have died from vaccine-preventable diseases unless their parents are the ones telling the story. I don't want to use other people's grief to make my points, and I won't watch someone else's discomfort unless I can be reasonable sure that they sanctioned its dissemination. Those are simply my internal rules.
Most people probably do turn away, which reinforces my point that common societal interpretations don't do this population any favors.
Emily, their parents want you to see them. They are crying for help both from society and from our governmental institutions whom constantly cut the budget for these folks. We need to see them. Only then can we understand the depth of the difficulties and to move to action and ask our school boards, our health and human services, our medical practitioners and carers to not forget them. They need us.
If we don't look at them, if we don't confront their reality and their personhood, then we have forgotten them and that is death to them. This is one reason I like the frank honesty of Kristina's blog. While she attempts to put a positive spin on things, she is honest about Charlie's reality. I'm sure when Charlie comes of age and ages out of school, we will see the difficulties of adults with this type of disability. Please, please, I respect you. Please remember to look at these autistics, acknowledge their existence and their profound hardships. We must never forget them.
Thank you so much for allowing me to speak here.
Anon...I do, and I will continue to acknowledge their existence and their profound hardships. My deepest wish for these families is some kind of therapeutic breakthrough that will bring an end to SIBs, in particular. I wish we could focus most of the research on that single factor.
"I won't watch someone else's discomfort unless I can be reasonable sure that they sanctioned its dissemination. Those are simply my internal rules."
Then you will never see the profoundly disabled. The ones society use to call "attic children". You will never be able to see the abuse of places like the Willowbrook School or the Judge Rotenberg Center. If you set a rule like this, you won't ever see these people. They don't comment on blogs and they don't produce videos or talk about their lives. They have profound global disabilities including profound mental retardation. All they have are the people that care about them and the people that care about them, their parents, are putting this out there because they are trying to make the public aware. It is better than what happened in the past, these children and adults were put in institutions where they were forgotten and never spoke of again.
If we turn away, I can only cry. I am sorry, but they need our abilities, our faculties to advocate for them. We can make the world better for them. But we must first acknowledge their existence.
As you have implied, youtube is certainly not the only place where one encounters the profoundly disabled, and there is a difference between encountering them in a video and doing so in real life. I am aware of them and encounter them in real life. I am aware of them. I am also about to spend some good family time with my family and won't be able to comment again for several hours.
Anon, you appear to be saying that anyone who can learn to mask their ASD behaviours in order to fit into a NT world is high functioning, and that somehow that allows them to ignore the plight of those that can't. That seems an illogical conclusion to me. As said above, we are talking about a spectrum disorder. I doubt anyone reading this blog needs reminding of that. I also doubt any of us need reminding that there are some that could never hope to hide their symptoms, and of course some that would choose not to anyway. You seem to feel the need to advocate for ASD people at the more extreme end of the spectrum, which is great, but in the process appear to resent those that do not sit at that end. AS if people who managed to get on with self fulfilling lives in spite of their Autism have taken an "i'm alright Jack' attitude, and have left their struggling counterparts behind with no thought. Yet I could provide a myriad of examples of how this is not the case, starting with the blog we are chatting on now.
I may be misreading your point but that it how it is coming across to me. Apologies if I am incorrect.
Anon, you are accusing Emily (and others on this thread) of dismissing the experience of others when, in fact, you are the only one who has done so. Several comments up, you flat out denied that people who can "pass" are autistic at all. You even suggested that we have personality disorders. In contrast, not a single one of us has denied, for a single moment, that people all along the spectrum are suffering. And if you knew anything about the work that most of us do on a daily basis, you would know that we spend a great deal of our energy fighting for the rights of all autistic people. If you think that we don't understand the pain that is out there, you are very, very much mistaken.
In denying the prevalence and seriousness of Asperger's Syndrome, Dr. Frances was not advocating for the rights of people on other parts of the autism spectrum--unless you consider dismissal of the experiences of some autistic people to be an empowering and effective form of advocacy for other autistic people. I consider it flat-out destructive to all concerned.
Yes, there is Asperger's supremacy out there, and it's disgusting, but it's nowhere to be found on this thread. If it were, you wouldn't be able to shut me up about it. Others have tried, without success.
Have you been following any of the debate on the removal of Asperger's from the revised DSM? I thought you might have some interest because what you describe for T. v the "over diagnosis" of Asperger's seems like one of the issues they're trying to address. As you point out the defining difference between Asperger's & autism is "typical" language development at around the age of 3. I think they've now realized that that's not a defining difference between eventual steady state deficits.
I'm looking forward to seeing how the field testing of the new diagnosis turns out.
I know this is late and I don't think you will see this but you should keep in mind that there IS a reason many of us feel autism is over identified. I teach. I see administrator's every day commenting about boys (only white and Asian, they never do this with our African Americn) who are getting into trouble with peers or in class, or struggling for whatever reason.. "I think he's on the spectrum" or "He's a little autisticy" or "He's kinda aspergery".
I've seen them do this with normal kids. I've seen them do this with kids who really need to be identified with personality disorders, or depression or even schizophrenia.
Casual comments like that from administrators or others is not the same thing as the allegation that parents somehow pursue a diagnosis just to sponge up an alleged 50K in sped expenses. Such casual observations do not equate to actual diagnosis, which require days of evaluation and reams of paperwork, according to very specific diagnostic criteria, involving teachers, caregivers, parents, and evaluators.
Unless you yourself are a licensed diagnostician who has evaluated these children thoroughly, in asserting that they have personality disorders, depression, or even schizophrenia is the equivalent of what you accuse the administrators of doing when they suggest "on the spectrum."
I have sat through many METs over the years. And yes, it requires a ton of student testing, lots of parent and teacher assessments but getting an autism diagnosis does not require specific diagnosis criteria.
School districts can identify autism when it has been ruled out by an MD and/or a child does not meet criteria. This is actually specified in law. I know of no other medical diagnosis in which schools can override a doctor's opinion.
A child who "looks autisticy" can be labeled with ASD even though they do not meet the DSM's criteria.
By expanding the definition far beyond the actual criteria, you have many children who do not meet the definition of autistic or Asperger's getting a label of AI or ASD (depending upon state/district).
Is it really reasonable that the number of children with autism has grown by over 6 times in less than a decade? That's what our state reports. Of course, in the 90's, everyone was ADD. Now, everyone is ASD.
This is not on point with what I've written. The assertion in the piece is that *parents* seek an autism diagnosis to take advantage of some phantom vast pot of money available for children who have one.
I can't address whether it's reasonable for your state to report that autism has grown by over 6 times in less than a decade as I do not know which state you mean or what their data are. What I do know is that studies indicate that as autism rates rise, rates of "MR" or intellectual disability seem to fall concordantly, indicating a recognition that some previously diagnosed as MR are, in fact, autistic.
As for your assertion that in the 1990s, "everyone was ADD," my son, who was born in 2002, is ADD. And it's not because we sought that diagnosis for him. Your comments strike me as in the same tone as the comments from the piece with which I have taken issue. Unstudied, unsupported, and accusative of people's seeking a "diagnosis du jour" instead of seeking help for children who genuinely need it.
I understand why you may think I am dismissive but perhaps a few comments don't make my whole position clear.
I've worked with ADD kids and ASD kids whose labels truly fit them and truly needed the services provided for those labels. I've also worked with kids who needed different services that they weren't getting because the label wasn't a good fit and the schools' were doing what they thought the label called for, not what the child needed. This label first (ie.. the label informs the services, not the student's strengths/weakness informing the services) mentality is not uncommon even in really good districts. I've also seen children who've been held back because their social skills, communication skills are underestimated due to their label. "She can't do that because she is _____."
As for the gentleman's statement, I've also seen parents seek diagnosis for autism but that is mostly in hopes that there will be an explanation for their child's poor academic performance or behavior problems. But there have been a few cases where parents have been able to force districts to pay for highly expensive private education. (http://articles.cnn.com/2007-05-21/justice/scotus.specialed_1_sandee-winkelman-free-appropriate-public-education-federal-court?_s=PM:LAW) But those are, as I said, those are rare and certainly not worth his gross generalization.
However, that does not change my concern that autism is being over-reported. Any (white or Asian) boy with speech problems, social problems or behavior problems is automatically suspected of being autistic. My school has less than 750 students and yet we have enough mainstreamed AI students to justify a single special education teacher to manage their caseload plus two students with autism in our self contained classroom. (On a side note, girls are being under diagnosed in my opinion as we've only ever had one). I believe our current number is 15. That's double what the CDC would predict.
I have to say, I agree about underdiagnosis among girls.
I just never have met a parent who's forced a diagnosis. Maybe someday, I will.
Our district is overwhelmingly white (not something we like about it), and any "minorities" are usually Asian-American, so I can't speak to the sort of disparity you imply in terms of ethnicity. If any other commenters have experience with this, I'd like to hear from them, too.
If your district is one that is "known" for providing services, that's one potential explanation for your high rates. It's a primary reason many autism families move into our district.
Parents can't force a diagnosis though they can try to find someone who is more likely to give them the label they want.
I live and teach in a university town. People are here because they work here or because it is nicer than the surrounding area. I don't think it has a reputation as being better for services just really good schools in general.
Post a Comment