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It’s not something you grow out of

zuzu

Shark-Fu* has a post up at Shakesville and at Angry Black Bitch with a very important reminder:

A bitch was pleased to read that Senator Clinton would increase funding into autism research and education, but I’d like to see some of that money go to adult autistics too.

Oh, I know that the press is in love with autism right now because the revised spectrum has resulted in a better understanding of just how common an autism diagnosis is. But the press has failed…horribly…to point out that autism is not a childhood illness just because symptoms appear when a person is a child.

Autistics grow up. Education is great and more funding will certainly help the many families who can not afford programs that will help their child become an adult who can participate in society. But autistics grow up and that 1 in 150 estimated figure should be a warning bell to policy makers that major funding increases in adult care and job training programs are needed now and sure as shit will be needed in a few years.

So go forth and fund research for a cure and research into treatments. I hope all the candidates intend to fund education and expand the availability of those programs to all families. But all y’all need to know that the thousands of autistic adults who woke up autistic today and will, by the grace of God, wake up autistic tomorrow need a commitment to healthcare, job training, work programs and residential care.

I’ll say it one more time…autistics grow up.

It’s true, and it’s something all too many people forget. My nephew has autism, and I know my sister worries about how he’s going to function as an adult — will he live on his own? Will he be able to work? Given how difficult it’s been to get necessary services and accommodations from a school system required by law to provide them, what’s going to happen when he leaves school?

Read the whole thing.

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* Is that the best handle or what?

55 thoughts on It’s not something you grow out of

  2. As an autistic I have to disagree with Angry Black Bitch in regards to “go forth and fund research for a cure.”

    We’re different, not diseased. We don’t need treatments any more than a woman needs treatments for being a woman or a gay person needs treatments for being gay.

    What we need is for you (NT society) to learn to accept us as the human beings we are and give us the assistance we need to live in and participate in your society.

  4. My sons are autistic – and I do thank Zuzu for putting up this post.

    There exists within the autism world a divide between the advocates of so-called “cure” – the disease model – and the disability rights/accessible society model. While I respect differences of opinion, I am a strong advocate of the accessible society model.

  6. Another social model anti-disablist here. Whilst it’s important that whatever means for managing and dealing with not being neurotypical are available for autistic (and related condition) people (especially in a world that’s pretty useless at embracing neurodiversity), presuming that the problem is that autistic (and autistic spectrum) people just aren’t neurotypical enough and the solution is making them more neurotypical is really problematic.

  7. Why would it be more important in a few years than now? Are autism rates rising? WHY do you think it’s rising?

  8. I recall reading somewhere about it being difficult for autistic adults who are diagnosed in adulthood to receive any kind of care – something about at least some states only providing this if autism is diagnosed in childhood.

    Also, what foibey said.

  9. I agree with the “no cure” mentality. My son has high-functioning autism and I wouldn’t change him for the world. But I would like to take away a lot of the frustrations he has when he interacts with the world around him. And unfortunately in society, change doesn’t happen just because you want it to. Or because it should.

    I know my son could bring talent to the table at any organization. But would he be able to navigate the corporate culture? And if he couldn’t, would that be blamed on him and his failure to adapt, or would the company value his contribution and make allowances for his differences?

    Based on what I’ve experienced in the school system thus far (he’s now in 5th grade) I’m inclined to think they would kick him to the curb. Their failure would become his failure. And that saddens me.

    (Usually, the accommodations I ask for at his school are very low-cost, low-effort such as decreasing the number of questions on a page to allow for less clutter, or decreasing the number of choices from 4 to 3 in multiple choice format tests–this is routinely met with serious resistance because change-is-hard and if we-give-them-what-they-want-they-will-want-more. Its incredibly frustrating to know that a simple adjustment could make his world and the world around him more harmonious, and they just won’t do it and they can’t even really explain why not.)

    I agree that funding needs to carry over into adulthood, not because we need to “cure” autism, but because we as a society need to get our collective act in order and embrace a more diverse population.

  10. I do want to note that by posting this, I’m not taking a position on cure vs. accommodation. Rather, I’m posting this because I think she makes an extremely good point that all the funding that goes to austim mostly goes to childhood education and therapy, and there are few resources available for adults. Who don’t magically stop needing accommodations when they graduate from school.

  11. Diagnoses of autism have increased sharply over recent decades. Some of this is due to refinement in testing tools, some perhaps to overdiagnosis and some to reclassification of some persons previously designated as so-called “retarded” into the category of autism. Some of it may be to an objective increase in the rates of occurrence.

    Part of the need for additional funding is that many of the caretakers of autistic adults – usually parents – will themselves need additional care as they age.

  12. I’m firmly in the no cure camp, even having seen the full spectrum of the disorder (my twin brother has Aspergers and I work in an Autism classroom). In fact, my experiences reaffirm the need for acceptance for a broader range of experiences, as well as the need for practical, academic and communitive preperation. We’re big fans of least restrictive enviroment in our classroom.

    And this can’t stop at 21. After my brother graduated, I started looking for resources for him, beyond social security and my dads insurance (which will always cover him, thank goodness), and there are a couple of support groups, but nothing big, and nothing that met his needs.

    The kids grow up! And other people need to expect that. People are entranced by the cute little kids who just seem out of touch with the NT world, but adult ASD? It seems like they still want them hidden.

  13. As a high-functioning member of the autism spectrum, I’ve had struggles making friends, with shyness that borders on a social disability, a hard time relating with anyone, and also the luck and resources (thanks to my sonn-to-be-ex-wife, mom, and most of my employers) to have had the time to work my own way in the world. I’m not sure I need to be cured or just accomodated. I’ve always felt different, was different, and was treated differently (sometimes for the better, sometimes worse, but usually just differently.)

    I’m not sure I’d want a cure. Would I be like the mental patients who aren’t sure if they need to take their medicine? Would I want to be bold and less socially repressed? Would I want to lose the good things: my focus, the ability to spot patterns in chaotic situations, the calmness that allows me to be fearless at times? I’m not sure I want to be cured. But I am all in favor of study.

  14. I’m probably shoving my foot in my mouth, but while I appreciate what Nate and Kat and everyone else who is supporting the social model/no-cure stance, I would argue that searching for a “cure” or at least some prevention would help those individuals who are *not* high-functioning.

    The anti-disablist model, while important (and should definitely be implemented), does not, I believe adequately allow for the fact that some individuals may not realistically be able to function in any society, no matter how inclusive it is.

    I guess my point is…why not advocate for both? Not because all non-neurotypical individuals need to be “cured,” but because it might improve the quality of life for those whose differences are so severe that it dramatically impedes their chances of living outside of an institutional setting.

    All of that said, I don’t know anyone who’s autistic…I’m applying my experiences with individuals with physical disabilities/differences to this model.

  15. My brother is a high-functioning autistic who wasn’t even diagnosed properly until about eight years ago, at age 52. I gathered his medical records once to help him get SSI, and his diagnoses were all over the map: depression, schizophrenia, retardation, etc.

    The school system in the 1960s was even worse than what Kat describes. Basically, the high school just wanted to sweep my brother under the rug. They practically shoved him out the door at age 16.

    Thank God my sister is able to live with him and my mother, who is 87 and becoming very frail. If she couldn’t take care of him I don’t know what I’d do.

  16. I’m a probably high functioning autistic adult (I’ve never been diagnosed but I perform as “autistic” on all diagnostic tests I have ever encountered–indeed, I perform as a low functioning autistic on tests such as recognition of emotion from facial expression–but since I have successfully negotiated the educational system and lived independently most of my adult life, claiming to be low functioning would probably be just over dramatizing). Anyway, I’m also firmly on both sides of the fence on the cure-accomodation issue.

    On the one hand, some autism is completely debilitating: leading to an inability to talk, interact normally, or live an independent life. Some sort of accomodation might help, but I really think that severe autistics could have a better life if their brains were brought closer to neurotypical. Even for high functioning autistics, let’s face it everyone, accomodation isn’t going to happen. Society isn’t going to ever be able to deal properly with people who can’t read facial expression or social cues. Sure, I’d like for it to happen. I’d also like to be able to fly to the moon by flapping real hard and one seems about as likely as the other. On the other hand, a lot of neurotypicals scare the sh!t out of me and I don’t really want to be like that. Er…sorry about insulting most of the board.

  17. I’m probably shoving my foot in my mouth, but while I appreciate what Nate and Kat and everyone else who is supporting the social model/no-cure stance, I would argue that searching for a “cure” or at least some prevention would help those individuals who are *not* high-functioning.

    I see your point. And I would like to clarify that while greater acceptance would be immensely helpful for my son, it may not be the only solution for every child. I am not an expert on autism by any means (maybe my son’s autism to a degree, but not the entire spectrum). While I wouldn’t change my own child and accept him for who he is… would I, if I had known to, done something differently to minimize the effects of autism on him? Probably. The challenges my son has had to face can be heart-breaking… if I had the chance to make it easier on him, I probably would have. What parent wouldn’t, really.

    People are entranced by the cute little kids who just seem out of touch with the NT world, but adult ASD? It seems like they still want them hidden.

    Exactly. My son was “cute” when he was three and would sit and open and close a sliding glass door for over an hour. No one minded that he didn’t talk, because… he was “so cute!”. It was easy to limit his exposure to people. He was 3, I just kept him away from everyone I knew wouldn’t accept him. But as he gets older, those around him find his quirks less charming… just as he’s excpected to more and more be not only in the midst of society but there without me to advocate for him. Then the focus turns to “disciplining” these kids/adults. Everytime I go to my local support group meeting*, all I hear is one story after another about a middle- or high-school age child with autism who has been expelled from school. If they can’t “manage” the behavior, they get rid of the source. Forget trying to understand the way the child thinks and approaching it from there. As adults, I can only imagine it gets worse (we aren’t there yet.)

    *The support group I attend is to help me deal with the education system’s approach to my child and not my child’s autism. Autism can be amazing and very interesting (in the meantime, my NT child is much less predictable and somewhat aggravating!). Autism is easy, the system is hard and that’s why many of us parents seek out support.

  18. Can someone recommend a good website or board where I can learn more about autism and autistic people? I am having trouble understanding the accommodation-over-cure stance and would like to do more research. (Personally, I have suffered from social anxiety all my life, have gotten help through therapy and medication, and would now never go back to the way I was. It’s not autism, I know, but it’s close in a few very small ways.)

    Thanks in advance for your help…

  20. On the other hand, a lot of neurotypicals scare the sh!t out of me and I don’t really want to be like that. Er…sorry about insulting most of the board.

    *snort* Pfft, most neurotypicals scare the hell out of me, too. And I am one. 🙂 Supposedly.

  21. I blog about my son and my struggles with the school here. Its completely anecdotal, mostly me venting about my experiences with the school as it intertwines with our daily life.

    A good source of special education legal information (not just for autism, but for any disability, is at Wright’s Law.

    Accommodations take many forms and are dependent on the specific person and the setting. For someone confined to a wheelchair, an accommodation in and educational setting might be an elevator, or being able to leave a classroom a few minutes before the rush at the bell. For someone with autism, an accommodation might take a different form, such as the ability to sit in a different (quieter) room to take tests.

    The Americans with Disabilities Act (ADA) guarantees people disabilities “reasonable accommodations” under the law but does not apply in every setting… and of course, there is much gray area in what is considered “reasonable”. Section 504 of that law assures that children have equal access to education (504 Plans).

    The Individuals with Disabilities Education Act (IDEA) sets forth laws governing how students with disabilites are treated and educated in the school setting, including the use of Individual Educational Programs (IEPs).

  23. Has anyone here read C S. Friedman’s “This Alien Shore”?

    She posits a world where any mental illness, disability or difference *can* be cured, but it is entirely up to the individual (as an adult) to choose a cure or not, and an elaborate system of societal accomodations has been made to allow people with varying mental dysfunctions and differences to live in a cohesive society with each other. In her story, this world is one of many colony planets, and it turns out, the only one that can do space travel because the only means of space travel that doesn’t cause deleterious mutations can only be navigated by paranoids, and the rest of the human worlds have all used the ability to cure mental illness to stamp it out, leaving them with no one paranoid enough to survive piloting a spaceship.

    One of her two main characters is an autistic man. It’s an excellent book.

    That being said, I often do think, in any discussion where people with a disability who are able to participate in society to the extent of posting on the internet talk about society’s desire to “cure” them, that it *is* important to remember that if you are here having this conversation you in no way need a cure, but there are people who are much, much more disabled than you. A person who can have a conversation on the Internet by definition can interact with society, and only needs accomodations from society to get by. A person who cannot communicate at all would probably greatly benefit from a treatment that made them able to communicate! So when we talk about a “cure”, I’m of two minds. I think humanity would rob itself of a potential strength if we stripped out the autism spectrum and made everyone neurotypical. On the other hand, treatments that could ameloriate low-functioning autism and give those people enough function that they could communicate for themselves and function in society to some extent would *save lives* (I’m sure most of you are familiar with how often autistic people are murdered by caretakers to the chorus of general yawns from the populace. The more autistic people who can stand up and talk for themselves, the less yawning will occur, and I think less murder.)

    So yeah. I don’t want the world where everyone is neurotypical, but I’d like the world where everyone can talk, even if it involves assisted keyboard typing. If a “cure” was aimed solely at making low-functioning autistics into high-functioning autistics I’d be in favor of it. For Asperger’s and high-functioning autism I’m in favor of more social acceptance and greater accommodations.

  24. The Americans with Disabilities Act (ADA) guarantees people disabilities “reasonable accommodations” under the law but does not apply in every setting… and of course, there is much gray area in what is considered “reasonable”.

    I believe that sometimes those grey areas are warranted. Generally speaking, I think almost all requests for accommodation are reasonable, but every so often I find that the requests put both the requestor and the requestee in a position that offers no benefit to the former while overtaxing the latter.

    I had a student a few years back who suffered from a severe form of panic disorder. I wanted to help her out as much as I could–I was willing to work with her privately on days when she couldn’t face class, help her catch up after she missed a week, etc. However, neither I nor the university was willing to comply with what she wanted–she wanted me to tutor her in the course materials privately, so that she would *never* have to attend the class. For obvious reasons, this was impossible for me. If she was unable to meet *any* of the requirements of a participation-based class, then she was in the wrong environment, and might be better off seeking an online version of the course.

    It’s the only time I’ve been unable or unwilling to offer accommodation for a disabled person. It wasn’t for lack of sympathy–I suffered from a very mild, temporary form of panic disorder–but for a lack of practical resources and a belief that a certain amount of personal responsibility may be necessary, if possible. (Giving extra time, a quiet room, wheel chair access, or a note-taker, using an FM, allowing a student extra breaks or encouraging the use of a service animal all seem to me to be not “reasonable accommodations,” but basic human necessities. And since we do offer distance learning, does that fit the requirements? I would hope so.)

    Bah. This has turned into “My Thoughts On Educating Disabled Persons.”

  26. I have Asperger’s, and at 22, my life is all sorts of messed up because I did not get continuous treatment throughout my life. There are a lot of things that I cannot handle on my own, but I’m stuck because of the lack of support for adults.

  27. When you have something with as wide a range as autism/Asperger’s, it’s pretty hard to definitively say “there should be a cure” or “there should only be accommodation.” As other people have pointed out, while a lot of people with autism are high-functioning or can be high-functioning with therapy, there are others who are not, and a high-functioning autistic person claiming that a low-functioning person is fine as they are is no better than an able-bodied person insisting that all of “those people” be institutionalized. When you’re dealing with a range of people, you can’t make decisions based on only one end of that range, whether it’s the high end or the low end.

    We can absolutely be doing a lot more for high-functioning children and adults, but figuring out a way to mitigate or avoid the problems experienced by low-functioning autistic people is important, too.

  28. Kat: Even more annoying than being hidden, is the infantilization that occurs. People, esp at recreation type places, keep charging him the kids prices on things. He’s 23 and looks it!

    Or among the very high-functioning, the stigma of being special ed at any point in life, is also harsh. One of my old students was a star basketball player in Special Olympics, and just really amazing athletically overall. Now, he won’t play in the adult bracket, or with the non special rec teams, because he doesn’t want them to know he is autistic, which is fairly obvious, because he doesn’t want to be made fun of.

    That’s the sort of acceptance that needs to happen. And not suprisingly, the best place we’ve found for this acceptance is in the homeless shelter where my brother works.

  29. Accommodations are not at the discretion of any one person. If an accommodation is deemed by the appropriate parties as reasonable (and this usually involves a legal or quasi-legal process), it is to be put in place. If the educator is personally unable to provide the service (say the accommodation is one-on-one assistance during class) then another solution is found (an assistant is brought in during class to provide added support.)

    The spirit of IDEA and ADA is that the various parties work together to come up with a mutually agreeable solution (not that this is always the case.)

    There is a distinction between providing “equal access” and providing “best possible”. While any child/adult (disability or not) would benefit from the “best possible” accommodation, but that doesn’t mean anyone is entitled by law to it. Likewise, accommodations are not “special privileges” or favors that we grant to people with special needs at our discretion. They are carefully examined strategies designed to level the playing field.

  30. I’d like to say that splitting so-called low-functioning from so-called high-functioning autistics when discussing a “cure” is display of NT privilege. We’re all autistic. Frankly it’s because of that privilege I never mention what my “functioning level” is, as function levels are used as weapons to shut us down when we speak or dismiss arguments.

    Also, on the internet, it’s impossible to tell who’d fall on what functioning level.

    alsojill-

    The problem becomes two things when arguing only low-functioning autistics need the cure. First it’s figuring out who is low-functioning enough to “need a cure” and second it’s an issue of consent. I think that no person has the right to alter the mind of another without consent.

    Alara Rogers-

    I think you have it the wrong way around, lives would be saved if people could recognize autistics as human beings, not horrors or burdons. It’s not for us to endure the burdon of trying to fit into NT society, it’s for NTs to change and become more inclusive.

  32. I’m probably shoving my foot in my mouth, but while I appreciate what Nate and Kat and everyone else who is supporting the social model/no-cure stance, I would argue that searching for a “cure” or at least some prevention would help those individuals who are *not* high-functioning.

    The anti-disablist model, while important (and should definitely be implemented), does not, I believe adequately allow for the fact that some individuals may not realistically be able to function in any society, no matter how inclusive it is.

    I’ve seen some pretty convincing arguments against the idea of high functioning/low functioning autism – not that there isn’t a spectrum of manifestations, but what “high” and “low” means and implies.

    Also, I’ve seen some convincing accommodation, anti-cure arguments from people who would be defined as low functioning.

    Check out what autistic people have to say for and about themselves. Their needs may not be adequately described or addressed by neurotypical assumptions.

  33. Also, on the internet, it’s impossible to tell who’d fall on what functioning level.

    I think that by being on the internet at all, you’re pretty much the definition of high-functioning. You have enough motor control to type, you have enough visual acuity to focus on the screen, your brain can process what you read and then translate that down to what your fingers type. I could be wrong, but I suspect that most autistics on the internet are doing all of those things themselves and are not relying on facilitated communication and the like.

    Does that make you a better (or a worse) person than someone who doesn’t have those skills and/or abilities? No. But it does mean that you have different needs than someone who is not able to communicate as clearly as you can.

  34. Nate and all y’all, thanks for your comments! And thank you zuzu for posting!

    To clarify, I’m not a ‘please oh please cure my 37 year old autistic brother’ advocate. He’s cool as hell and I happen to think he’s a different kind of normal.

    My point was that I will not stand in the way of those who seek a cause or a “cure”…I don’t feel that is my role despite my feelings…as long as their journey doesn’t deny funding for the autistic adults and children among us.

    I’ve lived my entire life with autism in my world and it is my hope that families come to appreciate their children and/or siblings and that policies to support and empower are funded.

    I hope that we can all agree on that but y’all can trust that this loving sister is prepared to fight for funding and respect no matter what.

    Oh and glad you like the handle (wink)…

  35. As long as we’re discussing “high-functioning” versus “low-functioning” and diagnoses, I think it’s important to note that Amanda Baggs who blogs at Ballastexistenz (linked in comment 25) has been diagnosed as “low-functioning,” among other things.

  36. Actually, “high-functioning” does not specifically refer to an individual’s ability to function in society or to communicate. It only refers to their IQ level. Its often mis-applied to the person’s abilitites. People on the spectrum have varying cognitive abilities. Those that fall into the “normal” IQ range or higher are referred to as “high-functioning”. High-funcitoning autism (HFA) is similar to Asperger’s–the difference being that those diagnosed with Asperger’s have an absense of speech/communication delay.

    An example is that while my son is “high-functioning” (has an IQ in the normal range) and can now speak, he has difficulty communicating and also a lot of trouble processing excessive sensory stimulation.

    In some ways, HFA is a blessing. My son can walk and talk and for the most part “blend in”. In other ways, it is a curse–his apparant “normalcy” often leads people to believe that he has abilties he doesn’t (he can’t ask to go the nurse when he’s sick–but he “looks” like he can, and he talks, so why doesn’t he??)

    We’re all autistic.

    No, we are not. And I wouldn’t presume to understand personally what my son’s experiences are. I can empathize because I know him and have been witness to his life, but I am not autistic.

    Autism is a DSM-IV diagnosed disability. My son meets the criteria for this, I do not. I believe many of us have autistic tendencies (in fact, some studies show that there is an increased occurence of autistic tendencies in people who have a close family member on the spectrum).

  37. One note on assessing individuals with autism–often, the testing that is done is designed for neurotypicals. So, when using a standard IQ test to test a child with autism, the results can be skewed. My son was originally diagnosed as mentally retarded at the age of 3 because he scored extremely low on the test. The test administrator was careful to note that while his score was low and based on that score, he was classified as MR, that he did not believe that my son had a low IQ but rather had an inability to comply with that particular test format or setting.

    And so my quest for testing accommodations began….

  38. I think that by being on the internet at all, you’re pretty much the definition of high-functioning. You have enough motor control to type, you have enough visual acuity to focus on the screen, your brain can process what you read and then translate that down to what your fingers type. I could be wrong, but I suspect that most autistics on the internet are doing all of those things themselves and are not relying on facilitated communication and the like.

    Or augmented communication? Actually, typing is a form of augmented communication.

    Also, you’re making a lot of assumptions in that post. Like Rosehiptea and Kay suggest, Amanda Baggs’ blog is a good place for a lot of information about this.

    I strongly suggest Andrea Shettle’s comment on this post, which is tailored toward people coming to Amanda’s blog after seeing her on CNN, but addresses a lot of NT assumptions about autistic people in general and Amanda specifically.

    You’re also silencing those who would be viewed as “low functioning” by denying that they could ever communicate, that everyone who can communicate is automatically “high functioning.” Seriously, see what autistic people have to say about themselves. They’re not abstractions, they’re human beings, and they have voices.

  39. No, we are not. And I wouldn’t presume to understand personally what my son’s experiences are. I can empathize because I know him and have been witness to his life, but I am not autistic.

    I’m guessing the “We’re all autistic” comment referred to all autistic people, regardless of their functioning level. I understood it as a comment against creating hierarchies that further isolate disabled people from their peers and the whole community, particularly if, like IQ, it doesn’t hold much meaning.

  40. You’re also silencing those who would be viewed as “low functioning” by denying that they could ever communicate, that everyone who can communicate is automatically “high functioning.”

    Hey, way to miss my point! I was trying to point out that not all autistic people are alike, and not all of them have the same abilities.

    I was further arguing (though it was implied rather than stated) that since autism is a range of abilities and not a monolith, focusing some resources on a “cure” could help people who are severely disabled even though some people who are less severely disabled than others feel there is no need for a cure as such.

    Are you arguing that, in fact, all autistic people have the same level of ability and that the same services will help all of them the same way, so therefore what helped you is what will help everyone who is diagnosed as autistic? Because that’s the only counterargument I can see when I am saying that not all autistic people are alike and that there are varying levels of abilities from person to person that need to be taken into account.

  41. Are you arguing that, in fact, all autistic people have the same level of ability and that the same services will help all of them the same way, so therefore what helped you is what will help everyone who is diagnosed as autistic? Because that’s the only counterargument I can see when I am saying that not all autistic people are alike and that there are varying levels of abilities from person to person that need to be taken into account.

    No, I was arguing that your assertion that being able to communicate on the Internet makes an autistic person high-functioning by default is incorrect, that the high/low functioning dichotomy doesn’t really represent autistic people, and that by saying what you did about communicating on the internet, you’re basically ignoring what many autistic people have to say about themselves.

    I said nothing that even remotely implied that all autistic people are the same or can benefit from the same level of services.

  42. At the risk of sounding whine-y and overly-PC, can we get some people-first language in this post? Simply calling people with autism “autistics” takes away all their human characters, all their life experiences and individuality, and subjects them to only being defined by their disorder. It makes my skin crawl to read that.

  43. And I got sucked into using the high/low terminology.

    Basically, you’re defining a group of autistic people who you assume can never make their wishes known, and saying that a cure would be good for them. You’re saying that the voices of those autistic people who can make themselves heard don’t count in discussing the politics or need for a cure because the fact that they have a voice at all means they can’t fall into the group you’ve defined.

    I’m not even sure such autistic people who are totally unable to communicate via speech or writing or any kind of augmented or facilitated communication exists.

  44. Lori — many autistics prefer “autistic” to “person with autism”. Check out these links to autistic bloggers/websites who reject person-first language:

    http://chaoticidealism.livejournal.com/31201.html
    http://www.jimsinclair.org/person_first.htm

    Also, there’s autistics.org, “The Real Voice of Autism.” They (obviously) use “autistic” over “person with autism.” So it’s not insensitivity, it really is what most of us prefer to use.

    I will also join the chorus against using “high functioning” or “low functioning” as if they were meaningful indicators of anything. They only reflect a person’s score on an IQ test, which may vary dramatically over a single autistic’s lifetime. Amanda Baggs of autistics.org and Ballastexistenz has had her IQ tested at many different levels, and been labeled both “low functioning” and “high functioning.” She has a great post about all the many ways autistics are discredited and shut out of discussions about autism by people who don’t want to hear them. They can be discredited both for being “too autistic” and for being “not autistic enough,” sometimes in the same conversation.

    http://ballastexistenz.autistics.org/?p=142

    Shark-Fu — Thank you for reminding people about autistic adults! That’s a huge issue in the autistic community, the tendency of NT people to think of autism only as something that happens to children. Indeed, much of the hysteria promoting intensive ABA as the *only* way for an autistic child to learn to function in society comes from this forgetting that we do in fact develop. People imagine that we will always have the same set of skills and responses that we have as small children unless we undergo this treatment, as though our autism somehow freezes us in time.

  45. Lindsay — If you prefer “autistics” then I can’t be one to judge. I’ve been so trained in my field NOT to use that terminology that it has started to sound like a slur to me, but I can respect personal preference.

  46. I’m guessing the “We’re all autistic” comment referred to all autistic people, regardless of their functioning level. I understood it as a comment against creating hierarchies that further isolate disabled people from their peers and the whole community, particularly if, like IQ, it doesn’t hold much meaning.

    If that is what was meant, then I stand corrected on that point. But I would say that the spectrum is so wide and varied that it would be a disservice to group everyone in it into one generalized bunch. “Heirarchy” implies some sort of rank structure, as if one type is “better” than the other. On the contrary, the spectrum is best graphically represented as horizontal.

    The practical application of that is the need for accommodations–what my son needs may be absolutely different from what another child with autism needs, especially a child in a different place on the spectrum. I have been to support group meetings that have splintered into mini-discussion groups because one group of people needs to find ways to get adaptive technologies for their loved one, another group needs to find a way to make an inclusion model work, another needs to find occupational therapists that understand sensory integration–etc., etc., etc. Its not a one-size-fits-all sort of disability.

    As for isolating a person from their peers–that would depend on who the person identifies with as their peers. My son has always gravitated towards NT children. As a toddler, long before we knew what autism was, he would stand and watch them play. And smile. He didn’t quite know how to join in, but he enjoyed them. He has an understanding of his autism and he is coming to terms with it. We discuss the awesome power of his ability to think on things from a different perspective and how the world is made better by that. We also discuss his frustrations about the ways it makes his life challenging. At the end of the day, he seeks to interact in “typical” culture and we work to make that happen for him. So, for us at least, recognizing the manifestations of his disability and providing accommodations CONNECTS him with HIS peers. And, in the long run, his ability to move about with some level of comfort among NTs seems to be something that will help him as an adult when there will be much less in the way of supports for him.

  47. Speaking as someone with a physical disability, the problem of early intervention becoming late neglect happens all over the map, as near as I can figure. It doesn’t seem to be limited to autistic adults; basically once the cute little poster kid becomes just another uncute adult, there’s approximately bupkiss available. I can’t even find very much good information on adults with my particular condition, and research is one of my professional skills.

  48. If the rate of autism is not increasing, there should be a number of autistic adults: boomers, gen X, gen Y, etc. I wonder what they (not counting bitter scribe’s brother) are doing with their lives.

    As kind of a crappy analogy, I remember thinking that ADD was unheard of before the 80’s. Then I found out that a 60 year old workfriend had been diagnosed with ADD in high school. So, it had existed, and was even diagnosable, long before it hit my consciousness. In those preRitalin days, they gave him speed, by the way.

    Similarly, the first time I heard of autism was when I watched St. Elsewhere, because the son of one of the hospital big shots had it. Years later, the youngest son of another workfriend was diagnosed with it. Both parents were strong advocates, who were able to get the school district to do what they are supposed to. Thus people were working with their son while he was still a toddler.

  49. Lori: Heh, I struggle with people-first language too. The special educators demand people-first language, the students don’t always care, and the community is divided itself, and a lot depends on context.. I’ve heard some pretty insulting things said in people-first language.

    It’s confusing, like all language. And it leads to some interesting situations.

  50. basically once the cute little poster kid becomes just another uncute adult, there’s approximately bupkiss available.

    I’ve also heard this articulated as an issue of what we expect of children (i.e., their dependence and need for care) versus what we expect of adults (self-sufficiency). As though somehow all disabilities are resolved by hitting the age of majority.

  51. My step-sister is autistic… she is 30 years old. She is still living at home and depends on her mom to take care of her. I completely agree that there needs to be more support with adults who are autistic. In the whole state of Ohio, there is 1 facility that will take her and teach her to live on her own. We have visited it a few times, and it seems like the perfect place for her to get started… I think we need more than just that. It means the world to her that one day, she will be living on her own.

  52. Also, from what friends of mine say, adults go through hell to get disability acknowledged and accounted for in the system. I don’t know what it’s like for those who were diagnosed as children and grew into adulthood.

    I do think a lot of it is what evil fizz says, “what we expect of adults (self-sufficiency)” even though many disabilities make it hard for adults to be self-sufficient.

    I imagine a lot of people are undiagnosed, Hector. I personally know a few people IRL and several online who have been diagnosed with Asperger’s in adulthood, and know of at least a few adults who were diagnosed with autism. A lot of people who went undiagnosed in the past were undiagnosed because they were better able to “pass” as NT (whether or not they were trying to, I don’t know enough).

    And some have been diagnosed, because autism isn’t necessarily a static condition. What an autistic child might be able to do, might not be the same thing an autistic adult might be able to do. Amanda Baggs was able to speak for a time, but no longer speaks – as an example.

  53. Lisa — I was diagnosed with PDD-NOS as a little kid, mostly because my mom, a nurse, had always thought something was different about me and pursued a diagnosis. We think today that I have Asperger’s, because I learned to talk faster than other kids rather than slower, but Asperger’s wasn’t known in the US until the 1990s, and I was diagnosed in ’89.

    I think it’s a lot more common for Aspies especially to go undiagnosed until adulthood, though. My boyfriend has a close friend who just recently got his Asperger’s diagnosis; he says his parents just figured he was weird.

    So I guess it varies with how aware your parents are and how big/active the autism community in your area is. (My mom was very active in the Iowa autism community, and there were a lot of support programs that we used, but when we moved to Kansas there was nothing).

  54. So I guess it varies with how aware your parents are and how big/active the autism community in your area is.

    Yes. And how aware your doctor is. Some doctors are still giving the “oh, he’ll just grow out of this” talk to parents.

    Another factor may be that if your child is having difficulty in school (as many autistics do) the parents may seek for that child to become eligible for special education services. In order to be deemed “eligible”, one must have a documented disability AND show a need for services. Autism is one of 13 disabilities recognized by IDEA as a qualifying disability.

    For many reasons, seeking special education is beneficial to a child (even though its far from a perfect system.) You then have the right to advocate for your child to have accommodations and related services to give him equal access to education in the “least restrictive environment”.

    But if you don’t seek to have your child found eligible for special education, then your child is considered “typical” and any odd manifestations of his disability are considered disruptive and poor academic progress is considered lack of effort or ability. In either case, the child is then vulnerable to discipline under the usual school rules, including suspension and expulsion.

    While special education children are required to adhere to all school policies, they are legally entitled to specialized instruction to understand these policies and supports to make this possible.

    So, if you have a child with all the symptoms of autism and are reluctant to have him diagnosed, a week or so in public school will get you past that indecision.

  55. I am the mother of a 22 y/o college student with Asperger Syndrome. He had an IEP throughout public school, and in middle school had disciplinary issues (verbal outbursts) and was in three different middle schools and out on homebound for most of 8th grade (and no, we didn’t move). High school was much better. Now that he’s an adult, though, I’m looking ahead and I see…nothing…out there to help him. He’s too high-functioning for our (mostly ineffective anyway) state vocational rehab agency, not disabled enough for my state’s DD waiver, and probably not able to collect SSI. We’ll see if he can get and keep a job. We’re hoping he can. He will get a degree in Computer Science. Health insurance is also a worry, as he will go off our family policy at the end of next year.

    I am so tired of hearing about the walks, runs, jumps, etc. for a cure. I simply don’t participate. A cure isn’t going to help my son, or any affected people already born. I suppose they are really trying to tie down genetic markers, so parents will be able to abort fetuses who might end up on the spectrum. Do they really think they will be able to tinker with the multitude of genes that *might* cause autism? They haven’t even been able to do that with diabetes yet!

    As far as Hillary being for autism research, well, yeah, sure…makes her look good for jumping on the bandwagon, yes? What’s her stance on services for people on the spectrum in their adult years?

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