Then and Now: On Changing Abilities, and Why Those Don’t Make Me “Fake”

When I was reorganizing my blog a few weeks ago, I discovered a large number of posts from when I was still in high school. These reminded me of the relative ability I displayed at the time, as compared to my current impairment. That is, if you feel that high school performance and locked ward placement – I am temporarily back at my old ward – reflect directly on one’s level of intrinsic functioning or impairment. If you believe that a high school student who performs well on all subjects is inherently better than a locked ward patient, it is easy to assume that I have become less functional – less worthy even. Worse yet, it is easy to assume that either my past performance or my current impairment are unreal. This is the way many autistics’ realities and therefore their existences are being denied.

Yet when you reason that way, you forget the social circumstances involved in shaping a person’s abilities and difficulties. In my own case, for example, high school was relatively structured. I, being highly intelligent, didn’t have to do much studying, so I could get by without planning my studies. Socially, I didn’t fit in, but that is of course normal for a high-functioning Aspie like me. College, on the other hand, was a lot less structured, and, beyond that, a lot more academically challenging. I could no longer get by without studying, so my lack of organizational skills bit me in the ass.

In daily living, I never did many household chores when I lived with my parents, and did them with relatively much help at the independent living training home I attended. Besides, I had a strict schedule there and someone to fall back on should I get stuck. In independent living, I didn’t have these, and I fell flat on my face.

Beyond this, there are the difficulties that people would rather deny. One’d rather deny that, in high school, I had meltdowns several times a week and was a wanderer. On the locked ward, back when I resided there in 2007 and 2008, that was expected of the behaviorally disturbed person I was, but people still clung to the idea that this had all started in 2007. It hadn’t.

There are also the things, when it’s online people judging autistics, that you just don’t learn from someone’s blog. I hesitated to come out as a self-injurer because I know my staff read my blog. Now they’ve seen me head-bang several times. There are still things you do not know about me, because I find them hard to articulate or because they are still simply none of your business.

People could esaily deny that I am as autistic as I am based on my former blog posts. I can offer a rebuttal if they’re willing to believe that autism is as much influenced by social circumstances as it is a medical condition. Unfortunately, the people who are most likely to doubt my autism reality, don’t take the social model of disability and won’t see autism as something influenced by such circumstances as whether a person is accommodated – either formally or informally – or not.

Read Full Post »

Highly Intelligent vs. High-Functioning

The fact that I refuse to buy into “functioning levels” with regard to autism, says nothing about my recognition that some people have more abilities than others. In fact, every autistic is different, but there are some more obvious ways in which autistics can have better or worse abilities. Intelligence is one such thing.

I have a verbal IQ of 154. My performance IQ cannot be measured because I am blind, but there is no indication that it would be below-average. I am, therefore, highly intelligent. Fine with me if autism advocates, or anyone else, use this term to describe me. I don’t like my intelligence for various reasons, but I have it. Some autistics do not or appear to do not. I have never denied that

With regard to the term “high-functioning”, however, I have a lot more trouble when I see it used about me. This term connotes independence in areas of daily living and a relatively good outcome. I am not “high-functioning” in many common respects: I live in an instituttion, I cannot work, I have difficulty with leisure activities, I have meltdowns and self-injurious behaviors, to name just a few things. Ironically, I do not fit in with the “high-functioning” crowd in one other respect, which is the fact that most of their problems are presumed to be social, and I am in a relationship.

If you want to refer to me in debates, and you want to distinguish me from your autistic relative who presumably needs a cure, and if you care to do it accurately, call me “highly intelligent”, not “high-functioning”. Then, examine your prejudices about people who are highly intelligent, whom you automatically always assume to be highly functional in daily life.

The fact that I refuse to buy into “functioning levels” with regard to autism, says nothing about my recognition that some people have more abilities than others. In fact, every autistic is different, but there are some more obvious ways in which autistics can have better or worse abilities. Intelligence is one such thing.

I have a verbal IQ of 154. My performance IQ cannot be measured because I am blind, but there is no indication that it would be below-average. I am, therefore, highly intelligent. Fine with me if autism advocates, or anyone else, use this term to describe me. I don’t like my intelligence for various reasons, but I have it. Some autistics do not or appear to do not. I have never denied that

With regard to the term “high-functioning”, however, I have a lot more trouble when I see it used about me. This term connotes independence in areas of daily living and a relatively good outcome. I am not “high-functioning” in many common respects: I live in an instituttion, I cannot work, I have difficulty with leisure activities, I have meltdowns and self-injurious behaviors, to name just a few things. Ironically, I do not fit in with the “high-functioning” crowd in one other respect, which is the fact that most of their problems are presumed to be social, and I am in a relationship.

If you want to refer to me in debates, and you want to distinguish me from your autistic relative who presumably needs a cure, and if you care to do it accurately, call me “highly intelligent”, not “high-functioning”. Then, examine your prejudices about people who are highly intelligent, whom you automatically always assume to be highly functional in daily life. Oh, and, of course, don’t assume someone is highly intelligent in the first place just because they can write well.

Read Full Post »

Against the Autism Dichotomy

MJ of Autism Jabberwokcky yesterday wrote about the autism spectrum dichotomy. As is apparent from the title, MJ aims to distinguish different subtypes of autism, and he once again chooses to draw the line based on “functioning level”. He illustrates his point with two examples, one of a textbook case Aspie and their difficulty finding a job, and one of a few low-functioning autistic children learning to say “I don’t understand”. Triumphantly, MJ informs us that, yes, there are autistics who don’t know how to respond to an unknown question. Well, duh!

What strikes me as astonishing in all these autism dichotomies, you-are-not-like-my-child posts, etc., is that no-one ever actually draws a line somewhere. If autism is a dichotomy, then where, exactly, is the line between high and low functioning? How many points on an autism questionnaire does one need? How many words must one be able to say? How often must one bite one’s hands? What IQ must one have? What household chore must one be able to perform? There is no objective measure to draw the line, and that is precisely the problem with any similar dichotomy.

To draw somewhat of an anlogy, do you know how valid the Myers-Briggs Type Indicator (MBTI) personality test is? You know, the one with the INFJ, ESTP, etc. personality types? Well, people switch personality type on average every month. And why? Because the MBTI uses a dichotomous system to classify people: you are either introverted or extraverted, either judging or perceiving, etc. This doesn’t work. Personality tests that use a sliding scale for the traits they measure – such as tests based on the Big Five -, are much more valid.

Now I am not aware of anyone doing a factor analysis on autism traits, although I’d love to see one. But it appears that autism consists of a few different traits, each of which a person can function better or worse on. More importantly, even if autisticness were a single factor, a ten-point or hundred-point scale would make much more sense to measure it than a dichotomous approach.

Admittedly, MJ acknowledges that there is something inbetween high-functioning and low-functioning, but he refuses to reject the labels on this basis. Can’t we, instead of saying HF and LF, just say that some autistics are better at skill X than others and some autistics are worse at skill Y?

Read Full Post »

Misconceptions About Autistic Abilities and Intelligence

Urocyon wrote a lengthy but very interesting post on abilities and the supposed loss thereof, especially in autistics. Even after multiple reads, I find it hard to digest all that she writes. However, I do already see quite a few misconceptions about autistic abilities, intelligence and “regression” that she addresses.

Firstly, people often suppose someone has lost a skill, when in fact they never had that skill, but they were never expected to have it, either. A lot of “regression” may in fact be explained by a lack of expected progress. To give just a tiny example, when I still lived in the independent living training home, I often found myself arguing over skills I’d presumably had before but no longer had. One of these involved the ability to plan a meal independently. In reality, I’d never done this and had always gotten help planning meals. What changed were not my meal planning abilities, but my staff’s expectations of them.

Changing demands can play havoc on one’s apparent skills on a very large scale, too. Just because I could easily plan for a test where I had to study 50 pages in high school, doesn’t mean I can plan to study 500 pages in college. In fact, I never planned for the 50-page study at all, but I need to if I need to study 500 pages. This may seem like a tiny example, but it is a big reason why keeping up with college academics is much harder than keeping up with high school academics, and I for that reason make a lot less progress at college.

Another misconception involves the idea that a high test score always indicates across-the-board ability. In truth, a single skill might enable a person to do well on a broad range of tasks at a certain age, when that same skill will not help a person as they get older. Amanda mentions in the comments that her IQ score dropped by half between the ages of five and 22. She attributes this to her hyperlexia, which enabled her to score in the 160s at age five, but wasn’t helping her anymore as an adult. Interest in and, hence, familiarity with the test items would also have an effect. For instance, I’m not sure I would still score as high on calculus as I did in childhood, because I had a special interest with it back then and haven’t in many years.

Changing environments can also influence apparent functioning. Put simply, if an autistic is in a too stressful environment for too long, they run the risk of burning out. I still find it hard to acknowledge that this overflowing happened to me in 2007, and I don’t use the word “burn-out”, because medically speaking that refers to very specific symptoms, which I didn’t display. However, I must admit that the change in environment from the training home to my own home, plus a lot of accummulated stress from when I lived at the training home, contributed to my psychiatric breakdown. It is of course possible that my self-esteem was ruined, that I was seeking attention, or any number of other explanations I’ve gotten from others, but you cannot simply dismiss the impact the change of environments had. It just wasn’t true that I’d always had the skills to live independently: until my institutionalization, I had always moved into less restrictive environments, and there was no way of telling beforehand whether I would be able to cope there.

As Urocyon highlights, all this becomes more complicated when you’re labeled gifted. Gifted kids are supposed to know better and be successful in almost every area. Furthermore, gifted kids aren’t supposed to lose skills. If you were once gifted, or scored as gifted on an IQ test, you should always display extraordinatry abilities. I find it somewhat ironic how a drop in measured IQ is seen as tragic when the child was intellectually disabled to begin with, yet as something unreal and impossible when the child tested as intellectually gifted to begin with. In both cases, a drop in measured IQ may indicate a loss of skills, and it may be an indication of a broader loss of abilities, but it may also indicate different developmental expectations, less familiarity with the test items, exhaustion, stress, or any other number of things. Similarly, if a person tests as highly intelligent, that may indicate they are actually highly intelligent – which does not say a thing about social, behavioral or daily living skills -, but it may also indicate they are just good at taking tests. There is no need to throw unwarranted and biased stereotypes at someone on the basis of a test score, even if these stereotypes are presumably positive.

Read Full Post »

The Validity of “Functioning Levels”

I’ve seen a few posts lately discussing the question whether we should believe in “functioning levels” or identify with a specific “functioning level”. I, for one, do not believe in them. This is not for philosophical reasons, but because there is simply no valid way of distinguishing a LFA subtype of autism from an HFA subtype.

This is not the same as saying there is no valid way of finding differences between individual people. For example, it is quite clear that someone who can speak, is in that respect different from someone who can’t. The matter isn’t black-or-white, of course – there are people who are partly verbal -, but it is clear that people can be differentiated on the basis of verbal ability. The same goes for IQ, presence or absence of self-injurious behavior or self-care problems, and all the other official or unofficial determiners of “functioning level” that float around the autism community.

But it is simply untrue that someone who is “low-functioning” in one respect, say, speech, will automatically be “low-functioning” in other respects. Some people who can’t speak score quite high on non-verbal intelligence tests. Conversely, some people who score low on IQ tests, can speak. Some people who can speak and score high on IQ tests, exhibit self-injurious behavior and have self-care difficulties. And so on and so forth.

I do not believe in “functioning levels”. I do not identify with a “functioning level” myself, either, except when it is very relevant, such as when acknowledging my verbal privilege. Because granted, I am high-functioning in that respect, and I have no problem acknowledging my abilities and the fact that they provide me advantages over people who do not have (or are not perceived to have) these abilities. That is, however, quite different from identifying with a non-specific, generalized functioning label. I cannot do this. Even I, who meets the criteria for being “high-functioning” in the two most formal definitions – speech and IQ -, do not conform to the general definition of high-functioning autism. Most people don’t. And most people deemed “low-functioning” are not actually low-functioning in all respects, either.

Of course, since many people, including professionals, do believe in “functioning levels”, it is sometimes necessary to identify with one, if only because it’s the label you were given. I was never given an explicit functioning label, but my Asperger’s diagnosis should indicate “high-functioning”. While I personally don’t identify with that label – or with the Asperger’s label for that matter -, it is sometimes relevant that I was or could’ve been given that label. For example, when exclusionist Aspies are policing what abilities we should and should not have, or when autism advocates are saying that I can’t possibly have self-care difficulties cause of my Asperger’s diagnosis.

Diagnoses, however, do not dictate identity. Just because the DSM says Asperger’s autistics cannot have had self-care difficulties in childhood, does not mean that my diagnosis dictates what difficulties I had. I can tell you that I had quite a few self-care difficulties, but they may be explained by blindness (which then the blind movement will object to, again, so what do you want?). Even if there had been a criterion (which there isn’t) that Asperger’s people could not display self-injury, I may’ve been diagnosed with Asperger’s anyway because the diagnostician didn’t know I self-harmed. Psychiatry is not a field of objective labeling, and the autism spectrum is so vaguely divided that the waters get even muddier here. There are many reasons why someone might be mislabeled, or why a certain (sub)diagnosis might be the best fit but not the perfect fit. This goes for the difference between the different ASDs, but it goes for “functioning levels”, too. These aren’t valid, either, and I can see no other reason to believe in them.

Read Full Post »

My Blog Doesn’t Tell You Exactly How Autistic I Am, and It’s Not Your Business Anyway

In discussions involving neurodiversity issues, when all real arguments have been exhausted, I am usually met with questions casting doubt on my identity as an autistic. Did I ever spend a day in special education or an institution? Can I speak, dress myself, use the toilet? How many times did I scream, bang my head, hit my caregiver within a set timeframe? I usually don’t answer these questions, since they are usually entirely irrelevant. However, beyond this, many are none of your business.

I am relatively open about my personal life on this blog, when compared to other neurodiversity bloggers. For this reason, whether I was ever in specail education or an institution, is too dumb a question to ask. However, the fact that I am open about being institutionalized at this moment and having spent years in special ed, does not mean that I will also be open about my every autistic difficulty. Even if I could’ve done so, I would not have liveblogged a meltdown: you have no reason to know about my problem behavior. Some examples of meltdowns can be found in the archives of thsi blog, if you really badly want to know. Other more open accounts of problems I used to have, can also be found in the archives, but I am not as eager to write about them now. Just because I don’t blog about them now, however, doesn’t mean they don’t exist.

Besides my choice not to disclose every single problem I’m facing, there is also the fact that I cannot explain a number of problems I am experiencing. I have been wanting to do an “Autism 411″ series on some of these problems, not for the purpose of letting curebies know how oh so pitiful I am, but merely for informational purposes. However, I’ve not gotten down to it because I simply cannot write about some of the issues I want to write about. I do not fully understand the issues myself, cannot find the words to describe them, or I cannot combine them into a sensible blog post. This does not mean these difficulties are not real.

There are also a number of problems that I indirectly write about. For example, I have criticized the Dutch long-term care system many times, and posted some specific examples of Dutch people in need of help because they were stuck in the system. The fact that I do not write as much about my own situation lately, does not mean that I face no problems with the care system. In fact, I do, but I cannot articulate these problems all the time.

But the biggest reason for my unwillingness to share every detail about my autistic difficulties is actually the very attitude of identity erasure. Curebies will always find a reason to disbelieve me anyway. Even if I published my care records online, people would still find a reason to doubt they are real or say anything. And even if you somehow weren’t going to look for every tiny bit of evidence that I am not “really” autistic, that should not be the point. People should not have to prove their autism over the Internet to someone they don’t know in order to have the right to express themselves as autistics. Your opinion on how “really” autistic I am, does not change the reality of my autism, after all.

Read Full Post »

Autism Realities: Let’s Not Deny the Full Spectrum

As I said, I don’t go on Facebook, and I’m actually considering deactivating my account since I found out about Facebook’s new privacy policy. I simply don’t want my every post to an Internet group to be available in Google with my full name for the next so many years waiting for people to use them against me if I ever become famous in some kind of activist community, and I haven’t been able to find out what Facebook does with group postings.

Anyway, since I am not on Facebook, I’ve been unaware of any discussion going on in the autism Facebookosphere until someone blogged it. Apparently, Alex Plank, who founded Wrong Planet, has posted an apparently feel-goodish “autism reality” video, which Harold L. Doherty reviews.

First of all, I know Wrong Planet, a forum primarily for people with Asperger’s Syndrome. I am a member of it, and indeed it sometimes drives me away due to just a little too much Aspie superiority – if an “Aspie social clique” existed at all, the most likely place to find it would be Wrong Planet. However, I have never seen Alex himself come up with Aspie superiority statements. If that’s what the video is about, I disagree, too.

So I decided to watch the video. At first, Alex acknowledges the spectrum, and confirms that it includes those who will always be non-verbal. I agree with Harold L. Doherty that I don’t like his use of Einstein or Van Gogh as a demonstration of the “genius” end of the spectrum: neither of them can be diagnosed with autism posthumously, and I don’t see why we need a genius in our “clique” anyway. So, indeed, at first it sounded like this’d be an Aspie superiority video.

However, as I watched the rest of the video, which had young people diagnosed on the autism spectrum define what autism means to them, I found only one person denying the reality of “low-functioning” autistics, by saying that a child with their ears constantly covered and screaming is an inaccurate picture of autism. Incomplete, yes: not all autistics display this behavior, certainly as they grow up. Inaccurate, no: some autistics do actually display this and other challenging behavior. Another depiction of autism that is slightly inaccurate is when the problems interacting with others are minimized to just needing to have it a little quieter. Reality: for some, even in a quiet environment, interaction with others is difficult or seemingly impossible. I would’ve liked it if Alex had called his video “Another autism reality”, because then he would be acknowledging that some autistics are not like the people portrayed in this video, but that the ones he interviews, should not be silenced or overlooked.

Now, let me return to the review. Harold writes:

Autism Reality Alex?
With respect, the autistic children like the boy who died recently in Nova Scotia, like my son who went missing, walking through dangerous traffic, the many who are never found safe might disagree. The autistic children who injure themselves with dangerous head banging, severe biting, chewing on their cheeks or starving themselves because of extreme taste and food texture aversions might disagree. The non verbal autistics living in institutional care
might have a different perspective.

I am glad he said “might”. After all, he does not know what any of them think of autism, and at least he doesn’t openly suggest that he speaks for them. Just one reminder: please stop using James Delorey as a poster puppet. He is dead, so he won’t ever be able to comment on the video, and not because of his “functioning level”.

Unfortunately, Harold goes on to deny the autism reality faced by the people in the video:

Other than that it is a nice video, lots of good communication, good social interaction, lots of high functioning skills like driving, attending busy, crowded events, good video production skills and no behavior challenges. And of course there are no cognitive impairment issues. Good idea not to confuse the viewing public with that whole “comorbidity” thing.

I’m not sure if that last sentence is meant to be sarcastic – I was in fact annoyed by the lack of acknowledgement of non-core symptoms, but there was no mention of these “just being comorbid disorders”. The rest of it to me sounds like denial of the autism reality faced by the people in the video. Even though most of them acknowledge having significant problems with social interaction and some point out problems with communication, Harold presumes he can judge how socially or communicatively skilled these people are just from their brief video appearance. I consider this unfair: we do not know whether these people’s video performance is representative of their performance on a regular day. We do not know whether they are in shutdown mode when finally being able to get home. We do not know whether these people attend busy, crowded places everyday, or were trying to show what they could accomplish if they really, really put their effort into it by going to a crowded place once in a while. (I didn’t make out anything about crowded places anyway, but that may’ve been visible only.) Video production may be a special interest, in which Alex is far better than in many other skills. We do not know. And even if these people are all able to communicate socially relatively well (with a lot of practice, since all are young adults), can drive, can manage to go to crowded places on a regular basis, and video production is not a special skill, Alex made it quite clear that the video was about the milder end of the spectrum. I do not myself fit many characteristics of the people in the video – although I could give a quite descent interview, I think -, but I do acknowledge that the reality portrayed in this video, exists, just like I acknowledge that Harold’s autism reality exists. I do not believe in the autism divide. Can both sides please acknowledge the existence of a full autism spectrum, with people functioning at all different levels in many different areas?

Read Full Post »

Too Low-Functioning for Mental Health

I am reminded by a post over at Spliit, that somehow links higher functioning in daily life to invisibility to the mental health system, to write about the functioning that is required to access healthcare in the first place. Of course, you may say that my own experiences are irrelevant to borderlines (I couldn’t access community mental health at first because I couldn’t communicate my needs, which is probably an autism thing), but I have seen some ways in which the healthcare system has set barriers for some people with BPD who do not have the skills to function in daily life, too. Here are just a few reasons why the mental health system may actually be inaccessible to people who have more difficulty coping in daily life. They are not meant to be exclusive to borderlines; even though I derived some points from the Spliit post, people with other conditions may face the exdact same problems. (By the way, I use the terms “high-functioning” and “low-functioning”, but I am not implying that there is a hard, black-and-white line between these or that people cannot function at different levels in different aspects of daily life.)

• People who are severely ill, may know that something is wrong, but not know what, or their illness may prevent them from knowing they have a problem. Randi Kreger, quoted in the post, connects denial to higher functioning, but I’ve also met people on my former ward whose denial (and blaming of family members or other relatives) was related to very low functioning in daily life.
• Community mental health providers usually expect clients to be able to ask for help in the specific areas they have trouble with. For this, the person has to be aware what their main complaints are and be able to communicate this to a mental health professional. Even acute inpatient placements may expect a patient to know what they need from the staff if they are not to be sent off as soon as their medical needs (eg. damage from self-harm) have been dealt with.
• Quite a large number of mental healthcare providers refuse to treat patients with severe acting out behaviors, such as aggression. This goes for group therapies like DBT (at least, what I’ve heard from the bordelrines I know), but even for some individual treatments.
• People who are unable to see a crisis coming, may not seek treatment except when they have already harmed themselves or others. Because at this point there is little use in therapy, people may be unable to access preventive therapies. But even if they are, they may be too unstable to be able to follow the therapy program, and/or the therapist may give up on them because they don’t make enough progress.
• Certain comorbid disorders, such as substance abuse, cause therapists not to want to treat people. It is a good thing that the number of dual diagnosis clinics is growing in the Netherlands, but there are still long waiting lists and these wards may require a certain level of mental stability.
• People who mostly act in may remain invisible to mental health providers, because they are ashamed of their self-harm, don’t know that it isn’t “just normal for someone my age” (pretty much every young female self-harms if we have to believe the media), or don’t know how to discuss this issue with a primary care provider, who must (in the Netherlands) write a referral to mental health. In this respect, people who mostly act out, may be more visible to mental health providers, because this behavior affects others (but of course in this sense the issue of shame applies, too).

These are just the things I can think of now. There are probably other barriers. Of course, if a person functions at an extremely low level and is an immediate danger to themselves or others, they may end up in the ER, but ending up in the ER is no guarantee that you will be able to access mental healthcare.

Of course, I am not saying that there are no barriers to mental health services for those who function better in daily life. As the post says, people who function relatively well at work or in social life, may have the ability to deny or mask their illness and avoid treatment. Since mental health providers don’t usually step in without the patient’s own explicit request unless the patient is a serious threat to themselves or others, family members cannot easily steer these people towards services. And even if they can, mental health professionals might turn the patients down because they make the professional believe that nothing is wrong. These are major concerns for families, too, so I’m not meaning to minimalize these. What I meant to write about, is that sometimes you may be too low-functioning to be able to access mental health.

Read Full Post »

My Share of Autism Stereotypes

Sometimes, people with disabilities consciously or, more often, unconsciously, hold the same steretypes and prejudices that we are trying to fight when dealing with non-disabled people. I am no exception. Yesterday, I had an interesting experience that made it clear to me that I still engage in the same, prejudiced loop of thinking about autistics that I despise when I see it in others. This is no good, so I am not writing this to claim that autism advocates with whom I’ve been debating all along, are right after all. They are wrong. And so am I when I find myself thinking along the same lines.

Yesterday, I was reading some old entries from Ballastexistenz, and I decided to check out Amanda’s friend Anne C. over at Existence Is Wonderful. I didn’t know Anne C. was the author, since Amanda referred to her as “a friend”. My first incorrect assumption came out immediately: for some reason, I was expecting to find Laura Tisoncik behind the blog – I’ve known Amanda long enough to know that she has more friends than just Laura, so I don’t know why I drew that conclusion. In any case, I also assumed, probably as an offshoot from the assumption that Laura was the blogger, that the author would have a blog in many ways similar to Amanda’s, and she would write about a lot of the same topics – not that I’ve everr seen Laura’s blog, if she even got one, so I have no clue what she would be blogging about. I from there on assumed her to be similar in autistic presentation to Amanda in some stereotypically important areas, like communication method and living arrangement.

When I found out that the blog is authored by Anne C., my assumptions didn’t change. I’ve come across her on an E-mail list, but I can’t remember which or what she wrote there. Just out of curiosity, I decided to read her bio. In this bio, Anne explains about her high school and college education, graduating with a Bachelor’s degree in engeneering in 2002. I read about her NASA internship, and about the fact that she went on to work at some company as an electrical engineer after graduating from college. From that point on, my steretoypical assumptions about her swung all the way to the other end of the pendulum: I suddenly imagined her as the classic “geek syndrome” stereotype. Why did she consistently identify as “autistic”, anyway?

Maybe, of course, it is because she has been diagnosed with autism. Or maybe, if her diagnosis is Asperger’s Syndrome, it is for the exact same reasons that I identify as “autistic”: to avoid the “high-functioning”, “geek syndrome”, “little professor”, “just a little eccentric” stereotypes, or to reinforce the idea that there is no major distinciton between the autism spectrum disorders.

I was not yet done prejudging Anne. I assumed, by the fact that she is employed and earned a college degree, that she must be living indepennently and, yes, having few difficulties if any with self-care. Of course I have stated a million times that these abilities are not necessarily interrelated, but if it’s not me I’m talking about, good, old stereotypes come easier than rational thought.

Note that I didn’t read much of Anne’s blog, and I don’t know whether she even blogs about these topics, so I have no clue about her specific diagnosis (or for that matter whether she even has one), living arrangement, main communication method, level of self-care skills, or any other skill thought to be important by those who created the “low-functioning”, “high-functioning”, “autism” and “Asperger’s” stereotypes.

Apologies to Anne for having converted you into a stereotypical image in my mind. I hope that you will take it positively and at least realize that now I’ve had an opportunity to view my own prejudiced ideas. I hope that you are not offended by my post. It wasn’t meant that way.

Read Full Post »

“You Are Not Like My Child.”

Whenever I go over to autism blogs to comment on pro-cure parents’ posts, it is only a matter of time before someone tells me I’m wrongly comparing myself to their child, because I (presumably) don’t have [insert whatever problems the child has]. I was almost drawn into actually comparing myself to someone’s child yesterday, but I pulled back, since that wasn’t the point I wanted to make. However, so that everyone is clear on this: I never said I am like your child. First of all, your child is a child, while I am an adult. Second, I have no problem admitting that your child’s measurable IQ and communicative abilities are probably at a lower level than mine ever have been. In that sense, I cannot speak for your child because I am not like your child – but then again, neither are you, and we only accept it that you speak on behalf of your child because so does every parent until their child is a certain age.

However, if you wanted to make a logical distinction between “high-functioning” and “low-functioning”, between “classic” and Asperger’s, or whatever terminology you’d like to use, you need to do more than to pick out someone you disagree with and tell them that they aren’t part of your group. You must have solid reasons for calling one person “low-functioning” and another person “high-functioning”. Furthermore, if you don’t want whatever you decided are the distinguishing features between the category your child fits in and the category autistic advocates fit in, to backfire on you, you must make sure that every autistic advocate falls into the “high-functioning” category, but every child whose parents visit your blog, falls in the “low-functioning”, “real autism” category. Otherwise, you would open up a can of worms of parents of HFA/AS children who say you are denying their child services, and you’d open up another can of worms of autistic self-advocates who say that, since they meet your criteria for “real autism”, they can no longer be discredited. This is difficult enough if you don’t want to end up with “the ability to disagree with me in a way that I can understand”.

Now once you have established where you would draw the line between “high-functioning” autistic advocates and your “low-functioning” or “truly autistic” child, imagine your child acquires just enough skills to cross the border to the “high-functioning” side, but he only barely crossed the line. What would you do if your child indicated he wished no longer to be cured? Would you accept his remaining autism and stop the treatments, or would you proceed to get rid of all his autistic behaviors? What if he were at that point over 18?

Now imagine your child reached whatever milestone for you marks the border between high and low, not through your preferred treatment method, but through, for example, advances in technology, a more autistic-friendly environment, or interaction with autistic adults who are farther along the path than he is? Would you still contend that your child was “cured”? Would you discredit your own child’s opinion based on his current level of communication or other skills, like you discredit many autistic adults based on their current level of communication (and other presumed skills) now? Or would you acknowledge that there are actually other pathways, besides your treatment of choice, to functioning as an autistic person in the NT world? And even if your child did learn his skills through your preferred treatment method, how can you assert that he is “cured”, when he has only barely crossed the line between “low-functioning”/”classic”/whatever and “high-functioning”, and is still pretty obviously autistic?

Now of course you may’ve decided to continue your child’s treatment despite his wishes, especially if he is under 18 or you are his legal guardian. To what point would you continue with the curative treatment? And what would you do if, along the path, you came across autistic advocates who are now actually like your child? Would you tell them to their face: “Okay, you are like my child, but I am not your guardian. If I were, I’d have you cured, too.” And if that were what you’d do, why don’t you do it now? I actually used to appreciate the writer of the Hating Autism blog (which is actually a total load of crap), for once telling me straight to my face that I ought to look to some biomedical intervention that could cure me, and that otherwise I was choosing to be a weirdo and a burden on the people around me. It ain’t nice, but at least he couldn’t be accused of speaking with a forked tongue – at least not on that occasion. Or would you keep on looking for things that make said autistic “not like my child”, even if you end up with total nonsense?

Of course I failed to address the situation where your child actually does want to be cured. I acknowledge that this is a real possibility, and not just for children who’ve been taught that autism is bad all along. I know quite a few autistics, diagnosed in adulthood, who never received any “curative” intervention but still can’t wait for the day one comes onto the market. I have no problem with these people – I disagree with them on many issues, but I can’t decide for them what medical interventions they should or shouldn’t try. Likewise, I wouldn’t have a problem if your child, once he is an adult, goes on to access whatever treatments are available then. What I have a problem with, is your divisive arguing: every person who doesn’t want a cure, is “not like my child”, regardless of actual abilities. Do you think that the adults who do want a cure – and some of them are actually quite highly-intelligent, verbal Asperger’s people, who would’ve been discredited if they disagreed with you -, do fall within the category with your child? Many years ago, Autistics.org already exposed your inability to come up with logical, sensible reasons why all self-advocates are not like your child. Why don’t you finally stop trying to fight with the same broken weapons, and just tell it like it is: “Since you can disagree with me, you are not like my child.”

Read Full Post »