21 responses to “Recognition”

  1. Carol

    Amen, sister. I took a PSAT in high school. I was 99th in language and 40th percentile in math. I was told “Don’t you think you are a little unbalanced?” like I sat there and decided “Wheee sucking at math sounds kicky!” I have dyscalculia which also means that I get lost a lot and don’t understand what this “north” is of which you speak. People think they can teach me compass directions or explain adding to me. (I manage to cut people short now when they say “Well what direction does the sun come up in” with “I don’t know, it isn’t coming up right now.”) Anyway its hard and the hamsters cycling the wheel in my brain don’t help.

  2. Sarah TX

    Oh, you are so not alone. Paul Erdos, one of the most imaginative and prolific mathematicians of the modern world, was quite clearly non-neurotypical, and self-medicated with coffee and amphetamines. Of course, he was seen as eccentric because of his gender and his social class. Most people don’t have this privilege.

    And that’s just the first one that came to my head. If I went back through my History of Science notes I could probably dig up quite a few more Big Thinkers along the same lines.

  3. minna

    The Bad Self-Diagnosed Autistic Person who full-out claims an autistic identity with all the negative parts that go along with and is doing it to be an enormous jerk seems to be a unicorn.

    I’ve met quite a few people who are self-diagnosed ASD, and of those about a third who claim the label Aspergers and proceed to deny any ‘negative’ aspects, or any aspects (some which are required for diagnosis!) they didn’t have either as a myth, or more often as Things Thase Gross Autistic Rainman People Do, Not Us Aspies. Which isn’t to say they’re in the majority (I’ve got no idea), or that self-diagnosis is invalid (I don’t think it is), simply that I have come across quite a few IRL in my time. And have also met the occasional person who was diagnosed by professionals in childhood who uses the label as an excuse to be an asshole. Though it occurs to me that I might just be agreeing with your statement here, since I’m not sure which is the most relevant part of that sentence. Unless by “with all the negative parts” you mean the social connotations, in which case I’m disagreeing? I don’t know.

    I had a similar issue through my entire schooling life. I got very high marks in primary school, and started failing math in grade 9, but couldn’t seem to get any help. I’d be told to study, but nobody would explain to me what that entailed, so I ended up reading the textbooks over and over, which didn’t help at all. And no matter how many times I tell people that I lose words when I’m frustrated or upset, they seem to disregard it.

    Good luck with your communication, in any case.

  4. Miriam Heddy

    Carol, I went and looked up Dyscalculia and they could have my photo beside the diagnostic list.

    In college, my husband suggested that, like him, I get a job shelving books at the library, since it was easy money, you could listen to your walkman while doing it, and I like libraries and books.

    I was given a bookcart full of books and realized, after a few minutes, that I couldn’t do it. One book, I could shelve, but it meant holding that book up in front of the shelf while carefully finding its place. A whole shelf of books felt like Death itself. I think I almost had a panic attack, as I felt dizzy and sweaty and I ended up pushing the cart back and saying, “Sorry–I realized I can’t do this.” I felt incredibly stupid–just as I did when I was a kid forced to keep doing the timed multiplication tests until I did them fast enough (which meant doing them over and over and feeling more and more helpless).

    I knew I wasn’t good at math, got lost easily, couldn’t read and follow a map, etc., but I didn’t have a name for it, and I often felt like I had only half a working brain and I developed a horrible perfectionism about writing because I felt like I had to compensate for the part that didn’t work.

    I don’t know what good it would do to get diagnosed now, but it frustrates me that I grew up without having a name for it.

  5. KJ

    Thank you. I feel like that often- people think I am really really smart because I know a bunch of random facts, memorize with great ease and can put word together in a way that sounds interesting. But I struggle with math, with social interactions and with spacial stuff. I didn’t learn to drive until last year. I hate parties because they overwhelm my senses. I’m pretty sure my LDs contributed to my depression, anxiety and eating disorder. I need help with some stuff. But I feel I can’t ask for it.

    LDs make life really difficult. Thanks for writing about it. It is so rare to read about another adult who struggles with LDs.

  6. Mindy

    Thanks for sharing your experiences. My son is also non-neurotypical and the reminder that sometimes he has to do what he has to do right now was needed.

  7. Sarah (another one)

    “The Bad Self-Diagnosed Autistic Person who full-out claims an autistic identity with all the negative parts that go along with and is doing it to be an enormous jerk seems to be a unicorn.”

    This times a thousand. I’ve never come across such a person in my many years of being Internet-obsessed. I’ve just heard a lot of people complaining about it. It’s infuriating. I know I have a rant about people who are ableist jerks about self-diagnosis on my blog somewhere. I don’t have any firsthand experience with self-diagnosis, having been professionally diagnosed first, but I have many autistic friends for whom self-diagnosis was a true lifesaver. (Several of whom have since been professionally diagnosed.) What I’d like to say to the anti-self-diagnosis people is, “are you personally willing to find a qualified professional and pay for assessments for all self-diagnosed people who want a professional evaluation? No? Then stop talking.”

    I wish also that professionally diagnosed autistic people in generall would be more accepting of self-diagnosed peers. I’ve heard stories of support groups outright excluding people who don’t have medical documentation, and it seems as though the validity of self-diagnosis comes up weekly on many of the forums. Sigh. Don’t we all take enough crap as it is? Why do some people have to be nasty and exclusionary towards SD people who are seeking support from us? Having an official diagnosis doesn’t give you an excuse to be a jerk to SD people, either. Urgh.

  8. Astrid

    Except that I am now officially diagnosed with ASD, I can relate. I recall the situation when I was being evaluated for ASD in early 2007, and the doctor asked my parents whether they’d ever suspected I was autistic. “Sure, since she was two,” my father said, “but we’ve also known from that age on that she is very intelligent.” That hurts, because my impairments were and still are denied because of my IQ.

  9. Kiri

    I’m not sure what to add other than “thank you”, so: Thank you.

  10. Rigs

    It’s even harder when you don’t have a “real” LD. My uni requires 4 semesters of Spanish and, as an otherwise straight-A student, I was given a lot of “study more, try harder” when I kept on failing tests. When, after I got down to disability services after 3 semesters of tanking my GPA, it turns out that I have a foreign language learning disability. However, when I mentioned it to one of my classmates, I was told I was making it up because I was “so smart”. Thank you for denying the fact that my brain isn’t hardwired in a way that can learn languages.

  11. Stephanie Lynn Keil

    I feel stupid most of the time. I have autism (“autistic disorder” diagnosis) with all of the cognitive problems and learning disabilities that come along with it (dyscalculia, language problems, etc.) I never got high marks in school, except in music. I was never in “gifted” classes. I don’t have the same abilities as many of the “Aspies” I read about. I was in special classes.

    “autism meant kids who didn’t talk at all and had to be put in helmets so they didn’t hurt themselves too much from banging their heads against the wall and lived in institutions”

    I pretty much fell into this category when I was younger. I was never considered to be “low-functioning” because I could always “prove” some sort of intelligence in some way, but I had very severe problems in other areas. I don’t consider anyone who can “prove” their intelligence in some way to be LFA. I, and many other people, only consider the LFA to be those who also have severe intellectual disabilities. A person can have “severe” problems, especially when young, and still be HFA or become HFA later.

    But as I got older I got better: I am certaintly HFA now. I learned how to drive (I have superior visual-spatial skills and am not clumsy), I even have a job now in a kitchen and am working on making my living as an artist. I think I will always be on SSI, though. I will most likely never graduate from college: I cannot stand being in that environment and my cognitive problems are too severe, I think; plus, I just don’t have the money. I am going to write about my new job soon, how it effects me, what I think about it, etc. I have some things to say.

    I have some other things to say about people with ASDs getting “paid” to do things as well. I think there is a way to do it because I think I am going to do it. I can’t explain it in words now but I think it will be helpful to many.

    My non-verbal IQ is very high: in the “genius” range. I can paint, draw, play the piano, compose, write poetry, etc. Basically, anything “non-verbal.” I suppose I have “savant” skills, which is another reason why I think I can drive (driving, drawing, painting, music: they all use the same part of the brain, don’t they?)

    But my verbal/language abilities are pretty poor.

    At 11 my IQ was tested at 96; before that it was lower and now it is higher. I read somewhere that this can happen to people with ASDs, especially to those with more severe ASDs who do not have an intellectual disability. But IQ tests are something you have to have good social and communication skills to take so it is impossible to truly measure an autistic person’s IQ and the more severe the autism the more difficult it is to get an accurate test.

    I was even considered by some to be “retarded.” I was told I would be “lucky” if I graduated from high school and would never go to college. I didn’t graduate from high-school (I have my GED) and I completed a little over a year of college.

    Sometimes I’ll pretend that they (my language and comprehension skills) are better than they really are so I don’t look stupid.

    I recently wrote a book review on my blog for the book “April Witch” (which I recommend, by the way).

    To be honest, I didn’t actually read the entire book: I could only read the parts that were interesting to me (typical of an autistic person). I didn’t understand many of the relationships in the book and got very bored reading them so I skipped to the parts I enjoyed.

    I also had much difficulty writing the review. I also heavily spell check everything before I post anything, though there are still errors in what I write, both in spelling and grammar.

    I’m tired of pretending to be “smart” around “Aspies” since all many of them seem to talk about is how “smart” and “gifted” they all are. I don’t really have “Aspie” skills. I have some “savant” skills seen in those with autism but I still can’t understand much of what I read and how to respond. I seem to be saying the wrong thing much of the time, even on the internet.

    I wish that all blogs just had a short summary of all of their posts. I really can’t read and understand things that well and I come across many long blog posts that I would like to read but can’t. It seems that everyone always talks about “accommodations” but I’ve never seen this: everyone seems to just assume that no one via the internet has language and comprehension problems. “Captions” and audio versions don’t work any better because they still involve language. Just a short summary and pictures would be great, too! I understand pictures and music infinitely better than language.

    (This comment might not even be “smart” enough to get through; I guess I’ll find out soon enough.)

    “What I’d like to say to the anti-self-diagnosis people is, “are you personally willing to find a qualified professional and pay for assessments for all self-diagnosed people who want a professional evaluation? No? Then stop talking.”

    Sarah, a person CAN get an ASD evaluation done for free. There ARE ways to get it for free: it might take more than a year to get it done but there are places (at least in the US since I live there; I don’t know about everywhere else) where a person can get in contact with a state disability agency and they will refer you to a diagnostic center.

    There really is no excuse why a self-diagnosed person CANNOT get an official diagnosis. I understand it might take a year or more to do it and they can just say something along the lines of: “I suspect I have an ASD and am on a waiting list to get evaluated. I am pretty sure I have one but will find out officially in a year or so.”

    Many public health centers, especially mental health centers (at least from my experience) will offer a sliding fee. If you can provide proof of unemployment than you will pay a very low or no fee at all; if you can provide proof of low income than the fee will be low.

    And if you have a low income in most places (poverty line or below) than you will qualify for Medicaid (which I have).

    If they don’t have a low income than there isn’t a reason why they cannot afford to get an official diagnosis. And if they have a good job with a good income than how can they say they are disabled?

    I am fine with self-diagnosed people as long as they are honest and make a real effort to get an official diagnosis because you CAN get one for free.

    They shouldn’t just say they have an ASD because they decide that they do, especially when they have all of the positive but none of the negative aspects.

    (Plus, I see a psychiatrist for free.)

  12. Kaz

    Don’t have the spoons to say anything long at the moment, so just: This. So much this.

    And thank you.

  13. Christine

    Stephanie:
    There are reasons other than money that a person might not seek a diagnosis. When I was living on a college campus and had free access to counseling services, I was thinking about a lot of things I needed help with including my anxiety, depression, possible ASD, my failing classes, and the possibility of hurting myself, but I never went to the counseling center. I have bad social anxiety, panic attacks. I ended up dropping out of school. I am in therapy now but that is because I have family to help me – my mom takes me to appointments.

    I don’t know if I’m making my point clear – what I mean is, money wasn’t the issue for me, fear was. I can’t speak for anyone else and I hate to assume things but I would be pretty surprised if I was the only person considering an ASD (or any disorder) who is afraid to seek help for some reason.

  14. Nonny

    @Stephanie:

    PWDs who are married to someone who makes a decent income are in a crap position, though. I can’t afford to see a psychiatric professional, because we don’t have insurance. It’s become very common for companies to hire people as contractors so they don’t have to provide insurance benefits. My husband makes enough money that we don’t qualify for various aid programs, but we can’t afford the expense of specialist visits, either.

  15. The Bald Soprano

    Stephanie: If your doctors never tell you that there’s free diagnosis available? Or if you have just enough money to not qualify for the sliding scale but not actually enough to pay for the thing yourself? Or if you’re ineligible for medicaid because you’re single with no dependents, like my brother? Or live somewhere where you get told by your GP (like me) that there’s no such diagnosis in this country as Aspergers? My GP before I left the US was talking to me about whether or not it would be to my benefit to be formally diagnosed, but now that I’ve moved out of the country, it’s not apparently an option here.

    Not to mention that: “And if they have a good job with a good income than how can they say they are disabled?” is not true, either. It’s possible to get a good job with a good income and be disabled. Harder, yes, but not impossible.

    (also, how do you get to be the arbiter of if someone else has all the positive aspects and none of the negative aspects of being aspie or autie?)

  16. codeman38

    @The Bald Soprano: Not to mention all the issues involved in finding a professional to begin with; even getting a GP appointment in itself may be a major hassle, particularly if you’re not covered by insurance. And then once you have gotten a referral, there’s the issue of contacting the specialist…

    I held off on going to psych services on campus for the longest time because I was under the belief you had to do a phone screening, and I really didn’t want to have to deal with that via relay for a number of reasons. Turns out they were willing to make an exception and do an in-person intake if you can’t hear well on the phone, but it was only after I’d pointed out this omission that they even added anything about this option to their web site or informational brochure.

  17. Carol

    Golly I’m going through this right now – I can’t process things well on the phone, especially when I’m depressed and I also have a hearing loss that can make it hard to hear. (Its a weird brain thing so if I’m upset its worse.) I go to an online school and I need something taken care of. They keep saying “Call us!” but I just want it in writing. Its like they refuse to get it. And my experience with self-disclosure is that I get treated worse. (Like when I had to go to the hospital because of vomiting – I have Crohns so we were afraid it was a blockage. I told my professor BEFORE I went in and asked for an extenstion, and told her I have crohns. She didn’t want to give me an extension. I had to get other people involved and it was just an awful mess. She more or less admitted that if I had only said that I was sick and in the hospital there wold have been no problem. But because its a chronic disease…)

  18. Heather Mac

    @OP

    I feel stupid all the time and as someone else who hears “but you’re so smart!” all the time, it’s hard to explain how or why (especially when, like you, I get interrupted). I do hope you’re able to figure out what the issues is and get it taken care of.

    @Carol

    I was that good in languages and that bad in math and I’d never seen the word “dyscalculia” before but I went and looked it up, thinking that might be my problem. In elementary school, I’d get the hang of whatever the lesson was after I bombed the test and while the test was being reviewed. I think I was at the Gifted Program (where I and a couple other students were bused to another school one day a week) when the rest of my class learned long division. I’m 26 and still don’t know how to do long division. In high school, some stuff I just never could wrap my head around at all. But I don’t meet all the criteria. I guess I neurotypically suck at math. :P I can’t do anything more complicated than basic high-school algebra. I think my little brother (who’s getting ready to graduate with a degree in engineering) got all the math-smarts.

    @minna

    I had the same problem, starting around middle school. And before that I could get good grades just by paying attention in class, and I never really learned how to study. I often gave up on math homework when the “algebracetera” from just one problem would cover two or three pages, because I’d plug my answer back in (to check my work) and four times out of five it was wrong. D:

    (And if any of that came out as offensive, I didn’t mean it that way. I’m still learning the PWD Community Lexicon. A glossary would be nice.)

  19. Katja

    This is very familiar to me. I have an ASD (diagnosed in adulthood but confirmed several times since, even earning me a “gold-standard” research Dx from a neuroimaging lab), and had a formal neuropsychological evaluation about a year ago. I scored in the 99th percentile on general intelligence (IQ; predictably peaking in block design), worse (~30-80) on less basic measures of memory, etc., and in the 3rd-10th percentile on tasks of more complex memory or info processing (while scoring, again predictably, within perfectly normal limits on basic attentional measures). Unsurprisingly, because of my ‘general intelligence,’ I’ve found (and still find) it nearly impossible to get others to take my cognitive deficits seriously, never mind consent to offering some kind of practical assistance, usually in the form of providing domain-general information or cues that no one really believes I either can’t grasp, or need in order to function. I’m typically dismissed as being ‘spacy,’ unmotivated, insecure, malingering, not trying hard enough, refusing to come out of my comfort zone (as if I even know what that is), blowing things out of proportion, etc.. With few exceptions, at best I’ve been politely humored, at worst showered with colorful insults for pretending to have a real disability and/or being willfully dense, or had existing privileges taken away given that I clearly didn’t need assistance in the first place and/or was taking advantage of the people responsible for providing it. At university, pre-Dx, the one professor I had who did get it (that I had wildly and paradoxically variable skills) had a niece with suspected ASD, and was clearly somewhere on the broader spectrum herself.

  20. Katja

    I was also more-or-less self-diagnosed before being professionally diagnosed (lucky to have good insurance, as well as a neurologist sufficiently freaked out by my behavior [pre-self-Dx] that he promptly sent me off to be evaluated). I’m glad to have a formal Dx, though largely for reasons of by now being impressively insecure with regard to my own credibility and capacity for accurate self-assessment. I don’t see that this makes me more autistic than someone who can’t, or doesn’t want to get formally evaluated. I also haven’t witnessed this kind of hostility towards parents who self-diagnose their children (or demands for diagnostic papers/other attempts at invading privacy, etc.).

  21. Katja

    Stephanie – I gather from your response that you presume disability, cognitive or otherwise, should affect all [work- or whatever-related] domains equally, and a person able or lucky enough to find a position that pays well and capitalizes on their strengths, can’t simultaneously suffer significant disability in this or another domain of their life. It also presumes that people can’t compensate or plow through, with or without support, often temporarily and at enormous personal cost. David Paterson has written something about the perils of being perceived as ‘high-functioning’ (unless you want to dispute his claim to disability): http://www.nytimes.com/2008/03/11/nyregion/11paterson.html?pagewanted=2. Joel Smith has also written a good piece on autistics.org: http://www.autistics.org/library/youhaveitsogood.html.

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