Autism Self-Diagnosis is not Special Snowflake Syndrome

posted in: Uncategorized | 38

A white woman with dark hair holds a stethoscope to her own chest. She is wearing a paper mask and a gray shirt.

Recently, 4chan-flavored trolls invaded the #autchat hashtag. For the uninitiated, Autchat is a bi-weekly discussion group for Autistic people. Past topics have included friendship, autistic representation in media and strategies for coping with executive dysfunction. The community is usually warm, welcoming and a great place to learn. Instead, participants were told to commit suicide or drink bleach to ‘cure’ autism. The source of their ire? An Autchat regular and middle-aged mother of two described herself as ‘informally diagnosed.’

Autism self-diagnosis is a topic that can evoke strong feelings in many people. It isn’t unusual for adults to self-diagnose. It also isn’t unusual to get a lot of push back or even violent threats for self-diagnosis. Why does self-diagnosis make people so angry? More importantly, why do people self-diagnose in the first place? The hostility directed at self-diagnosis is, fundamentally, based in ignorance of what factors lead to its existence: Healthcare inaccessibility, rapidly changing diagnostic tools and the changing face of what autistic people and autism even look like.

A frequent accusation leveled against people who self-diagnose is that they are displaying the symptoms of ‘Special Snowflake Syndrome.’ Special Snowflake Syndrome is a term used derisively to describe a desire to be special and different. The problem is, who doesn’t want to be special or different? The term stigmatizes harmless forms of creative self-expression. Believing that you have the soul of a Lisa Frank leopard or identifying one’s gender as ‘galactic’ doesn’t hurt anyone. I wish, when I was younger, I’d had the creativity and flexibility that people now have to express themselves. All that being said, self-diagnosis comes from a different place. While self-diagnosis shares the search for a vocabulary of self-expression, there are more sociological aspects that go into why it is so widespread to begin with. These aspects are not related to Tumblr or other popular social media platforms.

This is a cartoon of a frowning snowflake. The text, "you are not a special little snowflake," is superimposed above it.
Because no one is a special snowflake. Special snowflake syndrome isn’t a thing.

The root of self-diagnosis is a lack of good resources. A lot of people, particularly women and people of color, didn’t get diagnosed as children because autism was seen as a white, male disease. When I compare stories about my early childhood with male autistic peers, I am astounded at the similarities. For example, I was suspended from preschool for throwing a tiny, plastic chair at one of my teachers. In middle school, a boy asked me to be his date for the dance and I automatically assumed that he was telling some kind of joke that I didn’t understand. I didn’t realize until years later that I had badly misread him and his intentions. I spent hours, well into high school, carefully arranging my dolls into pleasing and sensical configurations. All of this probably sounds familiar to parents with autistic children. If I had been male, these social and behavioral problems may have been evaluated differently.

More seriously, autism was once seen as something apocalyptic for families. In one particularly notorious ‘awareness’ campaign from Autism Speaks, a board member describes her desire to commit murder-suicide with her autistic child, with her autistic child sitting only a few feet away and well within earshot. Some parents avoided formal diagnosis of their children because they wanted, desperately, for their children to be normal. Many people who were diagnosed later in life have developed their own ways of coping with a world that was not designed for autistics. Life may have been easier for them if they’d had access to certain supports.

As someone who was diagnosed as an adult, I feel the paradox of late diagnosis acutely. On one hand, I wonder if I would have struggled less in school if I’d had access to an individualized education plan, or even the awareness of why life was different for me than it was for my sister or my peers. I stumbled through most of my childhood angry, confused and often alone without knowing what I was doing differently. On the other hand, I feel extremely fortunate and grateful that I have not suffered through the applied behavior analysis and other abuses masquerading as treatment that has deeply scarred many of my autistic peers who were diagnosed as children.

Things are changing. In the last two decades or so, rates of formal autism diagnosis have steeply increased. An estimated 1 in 68 children are autistic, compared to the 1 in 2500 estimate from 1990. There aren’t, as some conspiracy theorists believe, more autistic people now than there were then. It’s just that our diagnostic tools have improved significantly. Furthermore, reduced stigma means that parents are not only willing but motivated to make sure their children get everything they need to succeed. ABA and other abusive therapies are still given unfortunate legitimacy by the American government and individual parents, but that is also changing.

We know why formal diagnosis rates have increased. Given this, what is an informal or self-diagnosis, and why does it still happen? One common form of informal diagnosis is when parents have multiple autistic children. New knowledge about autism and genetics may lead these parents to look into their own histories. Steve Silberman documented this phenomenon as early as 2001 in his article, ‘The Geek Syndrome.’ Some of these parents go on to seek formal diagnosis, out of curiosity or because they feel that accommodation of some kind would improve their quality of life. In general, people can lead fuller, more productive lives once they know how to address problems they didn’t previously understand. An autism diagnosis, or even the consideration of an autism diagnosis can provide important insight.

Given the obvious benefits, why aren’t adults diagnosed more often? Is that that they know they’d be labeled ‘neurotypical,’ thus popping their possibility of being special? No, of course not. Even if adults have histories and impairments that point to autism, autism is still largely viewed as a children’s disease. As a result, very few professionals can provide adult autism diagnoses. A diagnosis can include up to three days of cognitive testing if you can even find someone who is qualified to perform the tests in the first place.

The difficulty of finding professionals who deal with adult autism isn’t the main limiting factor in diagnosis though. That dubious honor falls to the sheer cost of an official diagnosis. Of the few autism specialists who are qualified to diagnose adults, only a tiny number take insurance. In the DC area, the cost of an official autism diagnosis from a specialist is approximately $4000. If you’re an adult who may be autistic and who has managed to muddle by without disability accommodations and you’re not in school, the high cost of a diagnosis just isn’t worth it. This is the main reason why groups by and for autistic people are often inclusive of people who are self-diagnosed. Most people simply do not have a few extra thousand dollars lying around to get an official label slapped on to something that they may already know about themselves.

Even without an official diagnosis, many people find engagement with the Autism community helpful. You don’t need an official diagnosis to benefit from learning coping techniques with people who have similar life experiences. Worst case scenario, someone who isn’t autistic learns how to function more easily from people who are autistic. All this does is make some people’s lives easier. There’s nothing sinister about it. It’s just another instance of the curb cut effect: Disability accommodations can improve the lives of more than just their target audience.

Two pairs of hands play with tangle toys.
Are the people playing with these stim toys actually autistic? It doesn’t really matter.

Of course, this leads to a common autism parents’ bugaboo: The belief that the people who advocate for the autistic community are not actually autistic, or that those people are too ‘high-functioning’ to understand the issues that affect these parents’ children. The thing is, many of these so-called ‘high-functioning’ people may not have always navigated the world as easily as they do now. I was a screaming terror as a child. The preschool I attended was Jewish parochial and affiliated with the Chabad movement. My preschool teacher was deeply religious and well regarded in the ultra-Orthodox community. When my mostly secular mother told my preschool teacher that she was planning on having another child, my preschool teacher told my mother, only half-joking, that my mother must have great faith in God. Headbanging, aggression and other behaviors that are generally considered negative are not uncommon childhood experiences for many ‘high-functioning’ autistic adults, whether they have an official diagnosis or not.

I appreciate that many autistic community groups like Autchat understand these issues and affirm the identities of people who are self-diagnosed. I hope that in the next few years, the difficulties and deficiencies in care that lead to self-diagnosis will be better understood in the mainstream. As diagnostic tools and understanding improve, I expect that the number of self-diagnosed autistics will decease accordingly, as self-diagnosis will no longer be as needed. I don’t expect the number of Internet trolls to fall any time soon, but a girl can dream.

38 Responses

  1. Sara, I love this post. It’s a comprehensive examination of the utility of self-diagnosis and self-recognition as autistic, in a society where women and people of color are often erased from the autism spectrum narrative.

  2. (I left this on Facebook, but Sara asked me to leave it on the blog. I added a few things.)

    I have complicated feelings about self-diagnosis. On the one hand, I wasn’t diagnosed until I was 22, because I had trained myself (not naturally learned) to make eye contact when I talked to people, like many autistic girls do because society punishes us more when we don’t follow social rules. I saw lots of therapists growing up because of my family situation, and was tested, but because of the eye contact they immediately dismissed it. Like you, I suffered a lot as a kid and teenager for not having that diagnosis, even though every time I read about Asperger’s I was like “this is me.” For example, in elementary school I had a social worker try to declare me “special ed” and shuffle me off to remedial classes–even though I was well above grade level in pretty much every subject–simply because I had behavioral problems. It would’ve been better if I’d had a diagnosis that acknowledged that one can be behind behaviorally without having other learning disabilities. At the very least, if I’d known about self-diagnosis sooner it could have at least helped me come to terms with some of my personal struggles, even if it didn’t come with the institutional services I needed.

    At the same time, I’ve seen a lot of people base self-diagnoses on stereotypes of autistic people. I know they’re not doing it to be Special Snowflakes; they’re doing it because they often have other mental health issues, or generally feel disconnected from society. But like, I don’t feel like I can ever talk about my autism on Tumblr anymore because it has such a skewed idea of what autism is, based on its community being run by people (many self-diagnoses) who think it’s nothing but “smart + socially awkward.” Autism has a lot of cultural misconceptions flying around about it, and I don’t think we can deny that if we open the door to every individual to define if they have it or not, there’s going to be at least some of that. A lot of those people might be better served by a diagnosis like social anxiety (which I also have, but they could have one w/o the other) and thus, aren’t getting the help they really need.

    It could be based on which (online or offline) communities we’re in. I’ve seen a lot of this on Tumblr, where autism is like the latest thing to label a geeky character as. It comes off to me as fetishistic and stereotypical, and it pushes out people like me whose struggles with autism (like time management issues) don’t all fit into the fun “savant” ideal.

    • Sara Luterman

      I asked Rose to re-post this because I think she brings up a lot of really interesting and legitimate objections to self-diagnosis. What are other people’s experiences with folks who self-diagnose? Does it vary from community to community?

      • “Autism has a lot of cultural misconceptions flying around about it, and I don’t think we can deny that if we open the door to every individual to define if they have it or not, there’s going to be at least some of that.”

        I’m Officially diagnosed ™ with ADHD, even though at the time I was diagnosed most psychiatrists would have diagnosed me with ADD, I had the fortune to be diagnosed by an expert who said “basically ADHD and ADD are the same thing” and only now, with the DSM-V is that realized.

        So definitions are malleable and not universally acknowledged within psychiatry.

        I am not trying to your other points, but it seems to me the problem isn’t shifting definitions skewing what autism is, it’s miseducation.

        The problem then isn’t self-diagnosis, but making diagnostic criteria accessible to people that want to self-dx.

      • Interestingly, many people I know have done what’s effectively the opposite of Rose’s comment–dismissed things like autism and ADHD out of hand, because they didn’t fit any of the stereotypes, then realising years later that when they’re looking at an actual diagnostic criteria, and not just the popular perception, they discover that they have a lot more overlap with it than they’d thought. So I think that this is a thing that can go both ways.

        I do worry that self-diagnosis can discourage people from seeking help, and could lead to missing a more accurate or helpful diagnosis, such as Rose’s comment about some people being better served by a diagnosis of social anxiety. Mental health conditions can be co-morbid, and I fear that self diagnosis sometimes encourages us to forget that.

  3. I attended primary and secondary school 1962-1975. Back in those days, *no* one was getting diagnosed with autism. I was quickly made to understand by the other children, in ways both verbal and physical, that I was weird, strange, different, etc. I had two choices: I could be a special snowflake or I could be a piece of shit that everyone else was allowed to step on. I opted for snowflake. Who wouldn’t? Believing in myself as a special snowflake was what helped me survive.

    32 years after I graduated high school, I self-diagnosed with autism. It was a relief to finally have one word to describe all my “special” characteristics and issues. Plus once you have a word, you can google that word, which in turn leads you to resources, communities and all sorts of helpful things. Self-diagnosis didn’t really change anything in my life except in that I found myself navigating life with more self-knowledge and self-confidence. So in way, self-diagnosis changed everything in my life.

    I have no current plans to seek professional diagnosis. I not only can’t afford to see a qualified specialist, I can’t even afford to travel to where I’d be able to find a qualified specialist. And really, what’s the point? I don’t want therapy. I *do* need supportive work environments, but the word autism isn’t useful in negotiating for these because most people don’t know what it means in the context of a 50-something woman. If they know anything about autism, they associate it with their neighbour’s kid who doesn’t speak and rocks a lot.

    So here I am – self-diagnosed and still a special snowflake after all these years. 🙂

    • Rosie: me too. My parents told me I had a complete personality change at age 3 and I vividly recall being hauled to testing at lots of different doctors. But they didn’t tell me because they “didn’t believe in labels” and they didn’t ell the school for the obvious reason- Special Ed in the early 60s.
      I also self-diagnosed in my early 50s, wasted a lot of money on a DX from and “expert” who thinks a middle aged woman should have the same thought processes as little autistic boys. However my own primary care physician actually Listened to me and after I had requested an excuse from Jury Duty last year she sent me one, and where I expected to see “uncontrollable cystitis causing incessant need to urinate” she wrote “jo is autstic and may be made to feel emotionally or physically threatened if forced to sit on a jury for something which may be Triggering to her” so I have my piece of paper!
      And I think we all need Special Snowflake T-shirts.

      • I need to clarify rrgaeding the video I mentioned. It is not from Autism Speaks. It is posted on whatkindofworlddoyouwant.com and it is entitled “Change Her World.” Now, before you think I’m just the meanest person ever.. I have nothing against people voicing their opinion, and attaching donations to a charity is fine. I haven’t watched all the videos of austistic children on this site, but I watched the one I mentioned plus a few others. For gosh sakes, a diagnosis of autism isn’t always such an awful devastating thing! We need more hopefulness out there ! I also don’t like Autism Speaks… guess I should do my own post about this! Just wanted to clarify my earlier comment.

    • Hi Rosie,

      You could be writing my life there!

      I grew up in Britain and moved to France eleven years ago as I realised that as a foreigner, it was easier to be weird. People just give a Gaullic shrug and put it down to the fact that I am foreign.
      Two years ago a friend suggested I look into Aspegers. Talk about a light being switched on!
      All the online tests show me on the spectrum.
      I’ll never go for a formal diagnosis as at 59 I don’t really see the point.

      However, I do cope with living much better now as I have a greater self awareness and understanding.

      I don’t know if that makes me a special snowflake, but the relief it has brought me is incredible. Who knew?

      • Hello Rosie,
        I am also from the UK, and diagnosis has come a long way here, I was diagnosed last year at the age of 52. I manage my life decently now, and there are no benifits to me from formal diagnosis… yet. As I get older, maybe later into a retirement or care home, then it will be useful in getting the accomodations I have made in my own home apply to my care environment. We are lucky, we do not have to pay for diagnosism it’s free on the NHS (though waiting lists are usually quite long. I would recomend a formal diagnosis for the use it will be later in our lives!
        Having said that, I quite agree, coping is much easier once we understand where we are coming from, at least I have found it so. And the greatest joy? Finding a community out there who understands!

    • This is pretty much me. I am 47 and when I was a kid “autistic” was not a word people knew. At 14 I had orthopedic surgery and bought the book “Son Rise” by Barry Neil Kaufman. It was my first exposure to the idea of autism, and it did not describe me. I grew up with an abusive family system that worked as a very strong motivator to learn as many social skills as possible. I have not had health insurance since 1998 and I have not had a household income over $22,000 since 2000. The free health and mental health systems available to me have proved inadequate to diagnose and/or treat ANY of the chronic health conditions I deal with. I don’t go around telling people I’m on the autism spectrum, but I DO search for coping skills, ideas, and suggestions from folks within the online autism community. One of my closest friends is an adult Aspie who has mixed feelings about self diagnosis but nevertheless listens and shares with me, for which I am so grateful.

    • I think that yes, it’s fair. As long as you have the support sytsem (emotional, social, financial) in place so that you will be able to care for both children, and provide for both of their needs which may be very different. As long as one of the kids is not neglected due to the needs of the other child, I think it could be a pretty fantastic experience for everyone involved I am an autistic and adopted only child parenting an autistic only child and I think that the one thing missing from our family is another child. If I were to adopt, I’d lean toward adopting a child with autism, as I can’t imagine raising a non-autistic child or attempting to balance raising one of each (for lack of a better term). I wish we had the option to add another child to our family, but I feel like I’m strapped already (I have rheumatoid/autoimmune arthritis and spine damage). Hope this helps Let us know what you decide!

  4. This pretty much entirely sums up a large portion of the discussions I’ve had about self-diagnosis vs. formal diagnosis — and I am very frustrated by the dismissive and rude behavior I’ve seen within the autism community (almost entirely from much younger people) about a lack of formal diagnosis in adults, about self-diagnosis. “There’s NO REASON!! You should get one!” they yell, with disparaging commentary attached, without recognizing the cost, the lack of access, and — one piece which I didn’t seen reflected in your pieces — the RISK associated with having a formal diagnosis. Yeah — the risk.

    It’s been recognized at a Federal level that in the US, parents with cognitive and learning disabilities (which autism can be seen as or classified as, even if that isn’t precisely true) are discriminated against very intensely by CPS, in family courts, etc. If an adult is a parent, avoiding a formal diagnosis may be a way to protect their children, by not giving a reason to CPS to take their kids away (again, this is so well-studied that there was a Federal mandate and money devoted to stopping this!) or for family courts to declare them an unfit parent in a custody battle. You can’t expect every judge to understand that an adult autistic parent is no less fit for being autistic than a ‘neurotypical’ parent.

    That’s a very big deal! I’d do anything to protect my son; I can see why other parents would make the choice to avoid formal diagnosis if they felt nervous or scared about the implications it might have.

    • Sara Luterman

      I don’t actually know a lot about how autism diagnosis affects custody issues. Do you have any good resources you can recommend?

      • Sure thing. It’s not something I expect people to know a lot about unless they are parents (or considering becoming parents) or know someone who went through this kind of experience.

        http://www.drcnh.org/familylaw.html
        http://www.thedailybeast.com/articles/2015/02/10/baby-taken-away-because-mom-s-disabled.html

        Important quote: “Massachusetts remains one of the 37 states in which disability may be cited as a strike against a parent in a custody case. Massachusetts State Rep. Paul Heroux introduced a bill that would have made it illegal to cite disability in such cases. It died in committee last term, but he has reintroduced it.”

        Thirty-seven states! D:

        http://www.ncd.gov/newsroom/roadmap-ending-discrimination-against-parents-disabilities-applauded-disability-community
        Important quote “In the report, NCD reveals that parents with disabilities are the only distinct community of Americans who must struggle to retain custody of their children. Removal rates run as high as 80 percent among parents with a psychiatric or intellectual disability. It also shines a spotlight on the hidden hardships faced by parents struggling to keep their children, adopt children, or even access reproductive assistance.”

        An eighty percent removal rate. Now put that kind of information in the hands of a spiteful ex, family member, or neighbor, and look what happens.

        The last thing is not hard numbers but more an observation of human behavior and more anecdotal personal experience with family courts — I had a friend lose in a custody battle because she is “a lesbian” (in reality she is bisexual but married to a woman) and was going through her custody fight with her ex-husband in the South. The judge found her to be less fit as a mother because of her sexual orientation, and there is no law in the state where she lives protecting her against that overt discrimination, which stemmed from spiteful behavior on the part of her ex. While that judge said it outright, a judge doesn’t have to say something outright for the information they have to bias their decisions. We know that autism is ill-understood by American society at large; we know that many people don’t understand it. With that in mind, would it be surprising if a parent wanted to keep that off of their ‘paper record’ if they believe it might endanger their custody of their children?

  5. I also hope that adult diagnosis becomes easier – I am a self-diagnosed woman and I don’t even feel like my GP 100% believed me when I told him. I’ve tried to find insurance-covered autism services for things other than social skills and they’re basically non-existent, even in a big city.
    HOWEVER, even if it was easier to get diagnosed, I don’t know that I would feel the need to get a formal diagnosis. For me, realizing/understanding I was autistic in my 30s (after reading up on it) was akin to being gay your whole life but never even knowing “being gay” was a thing, and trying to figure out why all your dates with people of the opposite sex were going badly. Once you found out you were gay, suddenly everything would make so much sense! I felt the same way finding out I was autistic. It has deepened my understanding of EVERY SINGLE ASPECT of my anxieties, thought processes, and feeling like I don’t fit in in society. Why do I need someone to scan my brain to tell me I think like an autistic? I know I do. I think this is another reason why self-diagnosis is so accepted in the adult autism community. I hope one day people see it more like being gay – just as someone would never say, “Are you SURE? Maybe you should go get tested!” when a friend came out as gay, I hope some day when you tell someone you’re autistic, they just believe you and move on.

  6. Jennifer R

    Why did you choose the photo of the woman wearing a mask for this post? You do realize that women with environmental allergies and/or mast cell disorders are also being treated like hypochondriacs and derided, right? Please don’t throw another minority/disability under the bus in your quest to describe your situation.

    • Aspie--Autistic 1957

      I can not speak for Sara but “pretending to be normal” or wearing a “mask” is what many of us felt we needed to do in order to do fit in to the non-autistic world. Often to not be totally cut off from the world many feel the need to do this every day many hours a day. This is exhausting can lead to breakdown and many mental issues such as depression and depersonalization. In my conversations with many autistics both on and offline the “mask” analogy comes up often.

      If an organization advocating for the rights of people who need to wear masks or just a lot of people who need to wear masks asks autistics not to use the mask anology they would find us very sympathetic to thier request. Otherwise this seems just like yet another demand telling an autistic person how to describe oneself. Examples, you must describe yourself as diseased or disabled not different because describing positive aspects of Autism is wrong and offensive to severely disabled autistic and the parents who struggle to managing them, you must describe yourself as a “person with autism” instead of “autistic” because it offensive to people with autism to describe them by there disability because they are
      are a person, thier disability does not define them. Do I even need to go into Autism Speaks?

      In increasing numbers we are not allowing well meaning people infantilize us by letting them tell us how to identify or describe our lives.

    • Aspie-Autistic 1957

      If this is a double post I apologize in advance.

      I can not speak for Sara but the “mask” anology is often used by Autistic people to describe the need to “act normal” many hours a day every day in order not to be excluded. This can be exhausting and lead to breakdown, depression, and depersonalization and other negative mental issues.

      Some Men need to wear masks also as well as autistic people with thier sensory sensitivities.

      If many who need to wear masks ask us not to use the mask anology I am sure they would find most of us quite receptive to the request. Otherwise this looks like yet another attempt of people telling us how to describe and identify ourselves. Examples are you must describe yourself as a “person with Autism” instead of “autistic” because it is offensive to people with Autism, you must describe Autism as as disease or disability because to emphasize the positive aspects are offensive to “severe” autistics and thier parents who need to manage them. I will not even go into Autism Speaks.

      What is offensive is infantilizing us by demanding we describe or identify ourselves based upon what you think.

  7. Peter Harding

    I reckon a lot of diagnosis in adults begins with self-diagnosis. I was diagnosed when I was 57, (in England for free!!) but only after I’d done a self-assessment test on line then read widely. My generation were very ignorant about ASD because there was so little information.

  8. I’ve lived in Washington DC with undiagnosed autism in my 30s and 40s. My wife, who had worked around many Aspies and autistics in her lifetime noticed it in me after a few years. I had my GP do a referral (just to prove her wrong). She was not only right she was very right.

    Now it is about the most important part of my life. It explains so many events in my life, and prevents many others of which I’d prefer not to experience.

    My insurance covered it, and it was a rigorous assessment by a PhD neuropsychologist from Univ of Chicago who does most cognitive and developmental assessments for the state.

    This part of you is as important as if you are male or female. To not get it is a crime. You have a right to know who you are and why you’ve behaved as you have, and how to change that behavior. Anything less is torture.

    I would have paid $40,000 had it not been covered, and yes I worked plenty of high powered jobs in my lifetime. Jobs are not life. Jobs are a part of life.

    I know in Washington DC one might think differently, but here in real America where we want to know our neighbors, associate, not ask them where they went to college or where they work (so as to decide if they are our friends or not), knowing one is autistic is about the most important thing in the world. Pay the money or get it covered. It is your right to know. I found out at age 60. I am 61 now and my life has dramatically changed for the better and I expect it to continute to; something I could never have said up until age 60.

    • I have a psychologist who agrees that I am Autistic, and when we are discussing the different skills and she asks me how I’m doing with eye contact thinks it is good that when I’m not, say managing to even fake eye contact but looking at the wall behind them, putting them in my sight, I have begun explaining that I’m Autistic.

      I got sick, starting in high school, worse in college. Several chronic conditions and a non-fatal motor-neuron disease. I went from school to homework to bed. I wasn’t well enough that they noticed I didn’t socialize. I can’t work. I went to one discussion group once a month. Mom needed me too.

      So that led me to be not working, to not have income. Jobs are not a part of my life. My parents can give me a small amount of money a month. Not only is it far less than $4,000 but legally I cannot have more than $2,000 and have Medicaid. Which pays for a lot of medications, physical therapy, and the psychologist. I am unable to drive- I’m in the 20-50% of people with ASD who are face-blind, and have the type that makes you unable to remember landmarks. I can’t remember which way I need to go turn from our driveway to get to the grocery store. I didn’t know the names of most of my elementary school classmates, and have a scrapbook with the class picture, and I drew blanks for each person by it… and I couldn’t fill them in while still in the class. We’d be asked to hand back papers and I’d show the name to someone and they’d point. I didn’t realize how much I depended on Mom for Executive Functioning skills help… until she got dementia.

      It may be my right to know. But I don’t have, largely due to the ASD symptoms, have what I need to get to people who can diagnose me.

  9. I’m a 32yr old single mom of 5 & I had my moment of realization on my birthday this past April. Autism ties all of my other issues together into a single cohesive whole. I cry every time I read more first hand anecdotes about Autism & life, I feel this amazing sense of relief coupled with an insanely bitter anger that I was never diagnosed as a child. In grade school (2nd or 3rd grade or so) I was first invited to join a gifted & talented group & then maybe a year later labeled as “emotionally disturbed” & relegated to the special ed room with the other misfits. The only area I was “behind” in academically was math & that wasn’t even quite true – I couldn’t memorize my times tables so my teacher told me even though I was technically ahead of the class she was going to give me slower work. Once I was in the special ed room I was given dumbed down work that drove me insane, I wound up playing teachers assistant & helping the other kids in the room a lot. I got into trouble one year because I saw a bee on the ground outside at recess & when a boy stepped on it I screamed & ran off to find some place quiet to cry. I wound up being forced inside & cried at the coat hooks the rest of the day. I would cry each & every time I saw any kind of death or dead animal. I just couldn’t cope with the permanency of it. Fast forward to middle school when I freaked out one day because we were supposed to dress like hippies but I didn’t see any classmates so I thought It was the wrong day & I hid in the bathroom crying for a few hours before I got found. Turns out it WASN’T the wrong day & I would have won the costume contest but instead I was forced to sit quietly in the library for the remainder of the day….

    Ugh, ok, my point is that there were soooo many red flags & soooo many obvious indications that I am Autistic but because I’m smart it was all dismissed as me being “difficult” “emotional” & “dramatic”. I always knew something was “wrong with me” but never could find the magic words that would explain it to other people. “Autism” is my magic word. Naturally I now have to fight tooth & nail, forcibly overcome all of my issues with scheduling/dealing with stressful situations/ etc so that I can get a frigging diagnosis. 🙁 It’s even harder because I am already diagnosed with Borderline Personality Disorder which instantly makes people think everything I do & say is manipulative & plotting & a lie. (Ok maybe not literally but it sure feels like it!)

    I had one attempt at diagnosis in September but the guy seemed to only know about the stereotypical characteristics of Autism & he decided I “can’t” have it because I can “read non verbal cues” & because I’m self aware enough to analyze my own thoughts (I explained my theory about why I’m good with non verbal communication – he decided “Autistic people can’t think that far into it”). Now I have to figure out who else within a 2hr driving distance works with ADULTS on the spectrum & I’m coming up empty. I’ve gone so far as to call places who help kids & the nurses I’ve talked to have all been very supportive but unable to point me in the right direction.

    I need supportive services desperately. My ability to stay organized was never especially good & now with 5 kids & no family/friends to lean on I’m drowning. My coping skills I’ve taught myself all my life are all failing & very few people will even listen. Everyone else thinks I’m trying to be “special”, that I’m “looking for an excuse” & therefor everything I say is bs.

    Self diagnosis is all I have right now, it’s my ray of hope & this article gave me more of the strength I need to keep fighting for myself. Thank you.

    • Oh no, Purity555, my heart goes out to you. I completely understand. I really hope you do find support. There are quite a few community minded Facebook pages that you might find friendship on, Sue Larky is an autism expert that might have local contacts for you. I watched these guys today:http://www.aspergerexperts.com/go/impulse/
      And you could Friend me, if you’d like?

    • I feel those incidents all too keenly. 🙁 I’m likewise around to talk if you want someone to listen. We need to be each other’s support. I’m also a mom in my 30s. Strength to you.

  10. Aspie-Autistic 1957

    Another reason people self diagnose is fear of negative consequences if thier employers find out.

    Many older adults grew up in an era when the only autism known was the most severe kind, therefore they received several harmful misdiagnosis and have a lack of trust of psychologists.

    The diagnosis of autism is a subjective one based on observed behavior. Which means proffessionals as well as amateurs can and do get it wrong. I would trust the clinition trained in how Autism presents in adults and females to get it right more often then the knowledgeable amateur. But I would trust the amateurs who have done thier reasearch easily over most clinitions who are not trained in how autism presents in adults and females.

    So I believe if the resources or access to an Adult Autism specialist is not available
    or the person just wants an explanation, a well researched self diagnosis is a good workaround.

    The merits of formal diagnosis vs self diagnosis is a ligitimate topic for discussion. What is bad is the shaming as a group people who self diagnose. Sara asks why this is done. Having been through many “self diagnosis wars” over at the wrong planet forum the basic feeling is that there are hordes of wannabes claiming the Autistic identity or more particularly the Aspie identity. Depending on the poster the reason claimed for the supposed wannabe hordes is to look cool and trendy, excuse bad behavoir, obtain benefits, it is an is easy explanination for why they are having real problems or are just an A-hole. The idea is that is that the wannabes hurt “real autistics” because most people will think autism is fake, way over diagnosed or think they are we are special snowflakes.

    Of course there are Autistic wannabes as well people who self disgnose based upon the Wikipidia article or one online test. The negative perceptions I listed above are believed by many non autistics and are used to bully autistics. That is why I doubt there are hordes of wannabes out there because if you do that you are going to find out quickly autistic is an acceptable slur.

    Unfortunately autistics are often bullied and are vulnerable to internalizing the negative things said to them by bullies. But as the cliche goes you can run but you can’t hide. Eventually we as Autistics as a group need to stand up for ourselves. As bad as we may be at reading people, bullies be they in the schoolyard or on the Internet can figure out that we are are scared and agree with there negative assessments of us.

    When Autistic people shame self diagnosers as a group they are doing what has been done to us.

  11. I too am self-diagnosed, after an withdrawn, lonely childhood with really poor social skills (and still do) and being “developmentally delayed” according to my sister. Noises and balance are a real problem. I also have poor social skills now; I prefer my own company just want be left alone. I did have brain surgery about 15 years ago to remove a vascular malformation near my amygdala. My neurologist seems to think that I am A-OK, because they only removed part of my hippocampus to deal with seizures. I finally have managed to get a cognitive psych test next month to strong explain fixation on an object and vertigo triggered by sound. Let’s see what happens. Does any of this sound familiar to any of you? I just want answers and skills to minimize the stimuli wreaking havoc in my life.

    • Sara Luterman

      Sorry for any confusion — I’m not self-dxed. I just think it’s totally reasonable for people to be self dxed given the expense and difficulty involved.

  12. Bart Mullin

    If one thinks that they might be Autistic, go see a psychologist and avoid potentially inaccurate self-diagnosis sites. Only through a thorough series of tests administered by a professional, will one accurately determine if they are or aren’t. Online amateurs can mislead and misdiagnose and even if one is intuitively correct and the tests are correct by happy accident, they are not official/legal diagnoses one can use to get help if one needs it.

    As per the 4chan trolls, they are sad, little people filled with much hate and misdirection and probably in More need of help than the people they’re trolling. Additionally, as a member or the ‘Special Little Snowflake’ club, (diagnosed last year at age 43) I think they are the archetypal representation of the callous NT’s who plague our general existences and refuse to make accomodations in the workplace such that we fail more often than not and have such spotty work-histories despite our best efforts (!).

  13. I am 58 years old, and when I was young, a diagnosis for my demographic was virtually unheard of. When my grandson was diagnosed a few years ago, I began my journey of educating myself. Much to my surprise, I found that so many of the stories were my stories–not just a little, but exactly. I thought about pursuing a formal diagnosis, but it really would serve no practical purpose. What I do understand though is that I can give my grandson so much from my own experiences; I can share a bond with him that may lift him and help him through difficulties. I think it is so much odd bigotry to exclude those who were born before adequate diagnostic tools, and to deny them a community. We have so much to offer each other. Shouldn’t we be supporting each other and not shutting each other out?

  14. […] Luterman: Autism Self-Diagnosis is not Special Snowflake Syndrome […]

  15. […] Luterman: Autism Self-Diagnosis is not Special Snowflake Syndrome […]

  16. Fierceandsassy

    I’m starting to understand myself as autistic and landed on this page after doing a google search on autism self-diagnosis. I am in school and planning on more of it, and for that and other reasons I am interested in a formal diagnosis. You mentioned someone in the DC area who is qualified–would you be willing to share who that is?

  17. I have a big issue with self-diagnosis. It is better to have a suspicion than self-dx. Because in many cases, self-dxes end up being incorrect as there are many conditions that can have similar symptoms such as schizotypal disorder, pdd-nos or simple personality traits that aren’t that out of the ordinary. Self-dxing harms those who actually have the condition in question.

  18. […] Read the rest of this thoughtful article here: Autism Self-Diagnosis is not Special Snowflake Syndrome | NOS Magazine […]

  19. […] “Autism self-diagnosis is not special snowflake syndrome“. (via autisticproblems) […]

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