5 reasons I am self identified as autistic

Every now and then I see a conversation in which someone (usually not autistic, but occasionally autistic) says that self diagnosis of autism is not okay. I’ve never dived into the conversation publicly before, because it’s a tough one to have and, to be honest, it’s exhausting defending yourself to people who’ve already made up their mind and don’t want to listen. But I do have some pretty strong thoughts about this, and I’m going to share them here.
There are a few things about self identification that I suspect a lot of people don’t realise.

It’s actually really scary to self identify. Coming out as autistic is a big thing. Autistic people are often treated poorly in our society and intentionally choosing to experience that without the back up of the societally expected approval by a professional is not easy and not something that self identified autistics take lightly or jump into on a whim. I have seen people go through this process, I have supported people to go through this process, I have gone through this process myself. It is harder than you can probably imagine and I have never seen it done without much intense deliberation.

The people I know who are self identified autistic took a long time to be confident in their conclusion. They researched, they read, they talked to people, they thought about it so much they felt overwhelmed, they stressed, they denied, they went back to the start and did it all again….. until they had to admit to themselves that there was no other option than to conclude they are autistic. And then they had to go through the process of telling other people, knowing that they would be criticised for it. You don’t go through that unless you are sure.

So, I have no problem with self identification of autism. I know many professionally diagnosed autistic people who also have no problem with it. The wider autistic community itself is overwhelmingly accepting of self identification. The autistic communities I am part of have been unquestioningly accepting of me and unwavering in their support of me both as I explored the possibility of being autistic and as I gained confidence to claim the identity as my own. I won’t attempt to speak for all of us, but I would like to share my personal reasons for avoiding a professional diagnosis.

Reason 1: The diagnostic process is expensive. For many adults it is unattainable financially with no benefit unless they intend to apply for funding or disability support

Reason 2: The diagnostic process is flawed. The DSM diagnostic criteria for autism are no less subjective, once you consider who wrote them, who applies them to peoples lives and the context in which they are applied, than a well researched well thought through self identification is.  They are also no more reliable or accurate.

Reason 3: The diagnostic process can be harmful. It requires a person to make themselves vulnerable to a stranger whose sole intent is to categorise you as a series of deficits and deficiencies- every professionally diagnosed autistic adult I know who went through that process says it was awful.

Reason 4: I am protecting myself. I am not prepared to subject myself to the scrutiny and subjective interpretation of my life by a non autistic “autism expert” for validation of what I know to be true and what has been confirmed to me multiple times from within the autistic community.

Reason 5: I am being defiant. I am opposed to the medicalisation of an entire communities way of being. There is nothing inherently wrong with being autistic. We are not broken or indeed of fixing. Our lives are not a series of imperfections. We are disabled, yes, but we are also a diverse, innovative, strong, and capable group of people, and we are more than capable of understanding ourselves without the need for validation and approval from non autistic “experts.” And for me personally, if I need an  endorsement for my own peace of mind…. well, I would rather take the acceptance of the autistic community over the bureaucratic approval of a professional any day.

Now, I’m not saying it is wrong to seek a professional diagnosis. There are many reasons to do so. One common reason is the need for support in situations where the person or organisation who will provide the support requires a diagnosis. I am not criticising people who take this path. I’m just saying self identification is valid too, for as many reasons as people seek formal diagnosis. I love that the majority of the autistic community is so welcoming and inclusive of all autistic people, no matter how they came to identify as autistic.

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29 thoughts on “5 reasons I am self identified as autistic

  1. Westie says:

    My main problem with self diagnosis is the increased risk that your self diagnosis is incorrect, and an accurate diagnosis of some other condition actually results in a better outcome.
    The second problem flows from the first. If “many” of the people identified with a given condition in the community are actually better described by some other diagnosable condition, then the services available will (over time) become poorly matched to the standardised terms they are made available to assist.

    This applies every much to Autism as it does to (for example) Celiac disease compared to a self diagnosed “gluten intolerance” (which leads among other things, to mislabelled food that actually puts celiacs at risk).

    Like

    • michellesuttonwrites says:

      You read the article before you commented, I’m guessing, so you know I disagree with you.

      Firstly, professional diagnosis does not guarantee accurate diagnosis. The diagnostic process is full of flaws, and even though who use it and see it’s value still acknowledge its limitations. A quick google search on this will give you much interesting reading. On top of that applying a medical model of thinking to the diversity of human minds and behaviour is inherently dangerous for too many reasons to list here. I recommend reading the work of Nick Walker at http://neurocosmopolitanism.com for more on this.

      The second “problem” you identify won’t be a problem because those of us who self identify and do not have a professional diagnosis do not qualify for services- autism specific service providers almost universally require diagnosis before they will help you. The exception to this tends to be services run by autistic people for autistic people, but those are far outnumbered by those run my non-autistic people.

      I’d argue that having services poorly matched with the standardised terms is a good thing because the standardised terms are problematic within themselves, as I indicated above, but that’s another discussion, and a long one at that, so I’ll move on.

      The problem I have with you comparing autism to coeliac disease is that autism isn’t an illness or a disease. I agree with you that misdiagnosis of coeliac is life threatening. The same situation does not apply for self diagnosed autistics.

      Autism is not life threatening.

      If you want to talk about people who experience anxiety and the risks to them if they do not receive support, that is different again. But although many autistics do experience anxiety, anxiety is not autism and you don’t need an autism diagnosis to get help with managing anxiety either, so I really don’t see how your concerns apply here.

      Liked by 3 people

    • Cassie says:

      Here’s the amazing thing.

      Autism diagnoses, like many other diagnoses, rely a fair amount on self reporting. I am an Actually Diagnosed Autistic. My assessment involved the assessor asking questions of myself and my mother (who was only brought along because I have memory issues and cannot remember large chunks of my childhood and adolescence) relating to what I felt, how I acted, how I acted as a child etc etc. I’m sure the way I behaved in the assessment was also taken into account but given that I’m an autistic woman and we tend to present differently, that could have been as much of a strike against me as for me.

      If I decide I want to be diagnosed with depression I can research the symptoms and then go to my doctor, lie and say I’ve been suffering those symptoms. The doctor will likely then diagnose me as depressive.

      I was self diagnosed as autistic before I was officially diagnosed. That self diagnosis was actually a necessary step in me getting an adult diagnosis. More importantly, it opened up a whole new vocabulary to explain lifelong issues. I found other autistic women my age who had burnt out the way I had, who were also used to playing along, to faking things they didn’t understand because that was what everyone did. I was finally able to explain that I’m not just being picky about food, there are things I can’t eat because of textural issues. It was a realisation that I’m not broken or weird and I’m not alone.

      Liked by 1 person

    • Amy says:

      I don’t necessarily think self-diagnosis is wrong, but I do think it should only be the first step. I think it’s insufficient.

      I have ADHD, and without a diagnosis I wouldn’t qualify for medication or any kind of services. They’re a goddamn lifesaver, they really are. I had qualms for years about not wanting to ~change myself~ with drugs, but the meds make me more able to control my emotions, and they help me function on the level expected of independent adults in the world.

      Proper diagnosis can be so important.

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      • Richard Cross says:

        You’re comparing chalk and cheese. ADHD is a psychiatric disorder that can (perhaps) be treated with drugs. Autism is a neurological condition, for which there is no treatment per se, and in particular no drug treatment (other than snake oil).

        Additionally… what “services” are you referring to? Free ones? For adults? In the UK, where we have a free National Health Service, there’s almost nothing for adults with autism, except for the most severe “low-functioning” cases affecting families on low income.

        There’s certainly nothing for those of us with Aspergers or “high-functioning” autism… which is why in many local authorities, you won’t get a diagnosis of Aspergers unless you pay for it privately.

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          • Richard Cross says:

            I was trying to draw a distinction between ADHD and autism in terms of the value of a medical diagnosis. But I do see them as subtly different beasts… am I doing ADHD a disservice in doing so?

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          • michellesuttonwrites says:

            I see both ADHD and autism as forms of neurodivergence. Because I agree with the values of the neurodiversity paradigm, I find it problematic to discuss any neurodivergence in terms of deficit or severity, even to make comments in reference to different ways supporting people. Every person experiences the effects of the strengths and the challenges their individual neurological make up brings to their life. I prefer to discuss along those lines rather than a compare and contrast style of discussion. Some people with ADHD find medication really useful, some don’t. Some autistic people find medication useful, some don’t. It’s more an individual thing than a diagnosis related thing. I think that medicalising any neurodivergence has its problems.

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      • michellesuttonwrites says:

        Amy, I believe that self identification is a “proper diagnosis”, and is certainly just as valid as one. Yes, you need a diagnosis from a medical professional to accesses services, but that in itself is not a confirmation that a medical professional is the only person capable of correctly and officially identifying an autistic person.

        I think that, even though ADHD and autism are both forms of neurodivergence, they aren’t really comparable for the purpose of this discussion. the people I know who have ADHD, or both autistic and ADHD, have experience quite different than myself and others I know who are autistic without ADHD. It’s a bit too complicated to discuss properly here though.

        But I do want to say, I know first hand the importance of medication for some folks and I agree that they are a lifesaver and people should absolutely have access to them if they need them.

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  2. nicolecorradoart says:

    I was professionally diagnosed with Aspergers at 8, but I prefer the self identification model. It allows more freedom of expression. I wish that autism service providers would allow self identification as a valid ticket into their club. Most (at least my local autism service provider) only allows medical diagnosis.

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  3. Ute says:

    Thanks for sharing your thoughts on this one. As somebody who was “auted” ( that is recognized as being a fellow autistic) by another autistic person, I went through the whole scary process of self-diagnosis too. (well Iwasn’t about to take His word for it) I have an entire library of books on autism at home, which I have read from cover to cover. So self diagnosis didn’t save me a cent ;-). It also took me a long time to forgive my friend for his observations ( what on earth tipped him off?!) and it took me even longer to accept the fact that I am autistic. Frankly, I don’t really care about the opinions of the mental health care professionals any more than you do. In the end, I am quite grateful to my friend for his input, because without it I would never have embarked on my journey of self-dicovery.

    Liked by 1 person

    • Autastic Me says:

      My story is much like yours. A female friend suggested I take a closer look and research autism for myself. I was confused. My only understanding of autism was what the media portrayed. It took me years to research. For most of those years I denied it. None of it made any sense.

      I finally asked my friend for help and resources. Best decision ever.

      Liked by 1 person

  4. Helen Krummenacker says:

    The first one, big expense for no payback, is the big one for me. I’m also probably going to be considered “insufficiently impaired” by a medical person.

    Nevertheless. I experience sensory overload and have to take strong precautions when going into public to help myself stay calm. My closest friends, the people I find easiest to communicate with, are mostly professionally diagnosed. My ability to get jobs is hampered by my social awkwardness. I’m sure I interview badly much of the time but don’t know why. I had to give up on a career in teaching because I realized I was emotionally unsuited for it. I couldn’t set up the boundaries that my neurotypical colleagues could. I had a speech impediment until I was 12 that I suddenly grew out of when my auditory processing got more sophisticated. I have a lot of physical problems like GI issues that are often comorbid with autism. I process stress and grief differently from most people but recognized myself in an article on autistic grieving. I stim when stressed, with my favorite stim being scratching my scalp all over. I always had trouble being still as a child, and I always got into trouble for not being able to control my emotions.

    I know my tribe.

    Liked by 3 people

  5. Trish Vidal (@stitchyfingers) says:

    One can be diagnosed by a professional and STILL be in denial and have it take awhile to research, and finally accept. In my case, it took 15 years. I worry about neuro-typicals who think that there’s any upside for anyone to self-identify as an autistic, it’s not like it automatically confers on you rock star status. Quite the opposite, it just opens up a can of worms to deal with and all of the sudden everyone thinks they can chime in on something they haven’t spent any time studying. As an autistic who was diagnosed by someone with MD behind their name, I find it funny when someone with no degree at all (or a business degree) tries to tell me that my doctor was wrong. Really? What are your qualifications? Passing HS biology? Self-identifying doesn’t hurt anyone. What it does is allow someone who is struggling in certain areas to realize that their struggles are not due to weakness or laziness or any sort of moral failing. What neuro-typicals don’t seem to understand is that autism is personally frustrating. Having an explanation for things one does or isn’t able to do, doesn’t make it easier to deal with it.

    Liked by 3 people

  6. nelliepmoore says:

    Thank you for writing and sharing this Michelle. I self identified before I received a “formal” diagnosis. The love, care and support I received from the tribe of women I found online through The blog Musings Of An Aspie ~ Cynthia Kim was as invaluable as the clinical formal diagnosis that I received. Many of these amazing and powerful women ( a few men too) were also self identified owing to all of the reasons you cite in your article. Were it not for the fact that my husbands job provided excellent insurance I don’t know that I would have a formal diagnosis. I pursued it because I could, and because I am looking toward the future and disability benefits. That all of the doctors and therapists that I’ve worked with over the years for co occurring conditions, anxiety, depression, PTSD, OCD, EDS symtoms, IBS symptoms, hospitalization, never thought to consider that I might be autistic was damn near my undoing. It was only through my own persistence and perserverance that I begun to consider that I might be on the spectrum. The stereotypes I knew about were for boys and men and they were not me. It was only, finally at age 53, in December 2014 that I completed assessment and testing and had a diagnosis beyond my own. The whole time I was completing the testing filled with mixed emotions, wondering what if they don’t see me, who I am. What if I’ve masked and passed for so long that they miss it. Self identifying was like getting the Rosetta Stone for myself. The formal diagnosis will help me to seek benefits, though there is no guarantee to that either. Even after having a formal diagnosis I had one of my other doctors ( for epilepsy) question my diagnosis, saying who told you that, as though I were lying, or my doctor was wrong in their diagnosis. Other professionals have done the same thing. Some coming right out and saying my doctor did not know what he was doing. I just want to say to everyone who is self identifued, stand strong, trust what you know. If you have cooccuring conditions of course look into care for those things. Trust what you know about yourself as a person on the spectrum.

    Liked by 1 person

    • michellesuttonwrites says:

      Thats for sharing this Nellie. It’s such a difficult road no matter how we go about it, and everyone else seems to have an opinion on who we are and what we should be like to fit into their own expectations of us- so tiring! I’m glad to hear you got the information you needed to understand yourself.

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  7. Happy Space Invader says:

    Although I agree with everything else in the aricle, I do wish there was a better expression than “self-diagnosis”. I avoid using the term myself, as people can commonly interpret it as hypochondria. In fact, the process I went through involved many many people besides myself.

    I have always known that there was something less usual about the way I think. From every story my mother told about my childhood quirkiness (normally to do with my very literal interpretation of things people say), to my career in IT where fellow programmers have called me a “geek” to all of the social traps and misadventures, some of them serious… I had come to the conclusion that things start go wrong when I try to interact with other people.

    What planted the idea of autism in my head, oddly, was a video game I played 6 years ago (when I was 39) in which you play a police officer interviewing suspects, and then making the call as to whether they are lying or not. The creators of this game went to some considerable trouble to map real actors’ faces into the game and, I am told that the depiction was largely realistic.

    I was catastrophically bad at this game, and frequently played it with my wife watching and helping from the sidelines. At first we found it funny, but gradually I started to panic… I can only imagine it’s what it would be like to suddenly discover you’re colourblind; there’s a whole world you’re not seeing, and you only know this because of what other people tell you.

    Not long after this, someone passed round the NHS autism test at work (there’s a running joke in IT that everyone there is on the spectrum). My colleagues scored just into the borders of the “perhaps you should get a diagnosis” score, but I was absolutely off the end of the scale. I took and re-took the test, making sure I was answering the questions honestly. I found more similar tests online, and the result was always the same.

    I tentatively suggested to my wife that I might be autistic; she rejected it at first, but it gradually started to make sense to her, given what I have already written above, and more.

    At around the same time, my wife and I were frequently having serious arguments, nearly always stemming from my blunt, self-centered approach to everything. I would frequently make random household-impacting decisions without consulting her. The arguments would culminate in her threatening divorce. We sought out a counseller who specialises in couples of which one or both are autistic. It was expensive, but saved our marriage. The counseller avoided giving me an actual diagnosis (because that was not what we were there for), but everything she described fitted perfectly.

    And, again, around the same time, I started “coming out” as autistic to my family and friends. For the most part, people were not in the least bit surprised. Some had even assumed me to be autistic already. For many, they would look back on past events and say “ah right, that explains why [insert incident involving me behaving bizarrely]”.

    It took the longest time to convince my parents (and even now, I’m sure sure how convinced they are). I think this is because they feel guilty at missing the opportunity for a diagnosis when I was 6 years old (when my school suggested I might be autistic)… or at any of the other points during my childhood when things went drastically wrong.

    But, as my rambling prose hopefully demonstrates, there was nothing “self” about the diagnosis. I also don’t like the term “non-medical diagnosis” either… but I really should shut up now. 🙂

    Liked by 2 people

  8. Pamela Ehn says:

    I self-diagnosed twenty years ago, and to this day people tell me I was wrong. And they say I’m wrong because I’m successful. But my success stemmed from that self-diagnosis. If I accepted those other diagnoses I was given, accepted them as true, I would probably be an endless patient in and out of mental hospitals with no job to speak of. My self-diagnosis gave me the key to the puzzle box. I was able to figure out what I needed to do so that I could get and maintain a job and have an independent life. If I were wrong, i don’t think i would have the success I have today because the solutions to my problems would have been wrong. The fact that my solutions worked is proof to me that I am indeed autistic.

    Liked by 2 people

    • Ele says:

      I had this problem, and the same solutions! When I realised I was autistic (again, for some reason I don’t like to call it “self-diagnosis”) I was outwardly successful, but inwardly falling to pieces on a regular basis – one of the reasons to pursue a diagnosis was the cracks that were starting to show. There’s one person in particular I considered a friend, very kindly / reassuringly telling me he thought I was wrong and just anxious, and I should wait and see what the doctor said. I had work telling me they were so sorry, but there was nothing they could do to support me until I had a diagnosis. My whole identity was just completely denied. But it was only through getting a diagnosis (via “identifying as autistic”), getting support for my needs and learning to play to my strengths that I am anywhere close to the “success” that everyone thought I’d always had.

      Like

  9. Mish Allucia (@mishspaz) says:

    I self “diagnosed” in 2007 and was shut down by two male professionals in 2007 and 2009 (at the time, it was an attempt to obtain an Asperger’s diagnosis in order to attain accommodations at work). I was finally diagnosed last year…and honestly, the professional that diagnosed me was actually FAMILIAR with the atypical traits and the more subtle things (and is it weird that I prefer Autistic over Aspie?). He also used a version of the ADOS used for children (since my mom remembers me as a toddler and I have VERY clear memories of social issues from childhood). What I was not expecting was the additional ADHD dx but I guess it was there all along… He also pings my a-dar so I’m always recommending him. 😉

    Wouldn’t it be nice if Autistic people could officially diagnose other Autistics? We are all different, but we’re still wired similarly…

    Liked by 1 person

    • Cassie says:

      It’s one of those funny things where somehow allistic people are considered the best people to diagnose autism. Mind you, god knows how many allistic people think they can just ‘tell’ whether you’re autistic or not.

      Then again, it’s not like that’s uncommon. I walked into my assessment for disability benefit. Was there anybody with a disability present? No. It wasn’t until my appeal hearing that there was a second disabled person in the room (a lovely Deaf guy and his interpreter).

      It was awfully hilarious to be told by an ablebodied neurotypical person that you aren’t disabled.

      Like

  10. priestessqueen90 says:

    I don’t know who I am. I have autistic traits, and trying to investigate my history for them has produced mixed results. I also have post concussive effects, so there are big gaps in my memory. Pardon my language mangling, but I’d guess I’d say I’m autgnostic. I mean, there’s no way I can know.

    Liked by 1 person

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