Why I’m still upset about my ASD diagnosis

Mad BBA little less than a year ago I had the most devastating, fascinating realization of my life – I am autistic. Yes, I’m “high-functioning” meaning I have no intellectual disability and retain the power of speech, but my autism (formerly called Asperger’s Syndrome) is not mild. It affects my moment-to-moment life every day in ways I am still discovering. Moreover, my condition has affected the long-term course and events of my life tremendously and will continue to significantly affect me the rest of my days.

In the fall of 2016, I had come to a point in my life where the mental healthcare establishment had seemingly given up on me and I on it. I’d been put on every psychiatric drug and combination of drugs imaginable and had not been helped, and in many cases hurt, by them. No amount of talk therapy could get to the bottom of why my anxiety was so unconquerable, why I was unable to “get my shit together,” or why I had so much trouble forming and maintaining relationships with other human beings.

SONY DSC
Isolation screws you up.

The sad truth is that psychiatric medicine is still very much a “trial & error” field. A person comes into an office and describes a vague constellation of symptoms that are nonetheless crippling, and whatever new psych med the drug rep dropped off will be prescribed for anxiety or depression, and ALWAYS, ALWAYS at some point, bipolar disorder.  Yet if what you have is an inborn neurodevelopmental disorder, a drug that only deals with biochemical imbalances is going to have limited benefits and frequently will instead make you sick or exacerbate negative symptoms.

If doctor after doctor keeps taking a crack at fixing you, and you never improve, at some point the medical system will blame the patient. I’ve been told in more complicated terms that if I would just be less weird and learn to “deal with stuff” I would feel much better. If I just decided to improve and looked on the bright side, I would no doubt be less afflicted. If I would simply “get my shit together” and look after myself more competently, I wouldn’t feel overwhelmed. I just needed to “get serious about getting better.”

Obviously, in the light of an autism diagnosis, these are uproariously insulting suggestions.

I always thought, “Decide to be better? Deal with things? Stop being so odd? Why didn’t I think of that?!” But of course I had. It was all I thought about: how to blend in and not draw negative attention to myself and my challenges. I didn’t even consciously know how much I was exhausting myself in order to be, or at least appear to be, happy and normal. After all, I didn’t understand that I was experiencing life differently from most other people, because at no point had I ever looked through the eyes of a “normal” person. It was outside my experience, because I was born different.

So this is what happens when you grow up unwittingly autistic and female:

  1. I was taught to mask autistic behaviors. Not on purpose and not just by my family. More than we can know from being immersed in our own culture, little girls are taught to carry themselves differently from boys, to move around less, and to stifle certain body movements, “inappropriate” humor, or interests that do not fit with the proscribed roles of females. If a little boy takes off his shirt while playing on the playground, it’s not that odd, but if a little girl does it, it’s an incident. If a little boy wants to play with Hot Wheels or make fart sounds or tell gross jokes, it’s just boys being boys, but a girl will be harshly reprimanded. The world is more of a minefield of potential social faux pas for a girl than it is for a boy, and so teachers, parents, and normally developing peers will nag, tease, shame, bully, or punish any behavior that is not seen as “fitting in.” This is dangerous.
  2. When you are taught to mask, you are robbed of your true identity. Because I was not allowed to be as pedantic, vocal, fidgety, gross, eccentric, rigid, naked, or “masculine” as I wanted to be, I began to collapse in on myself. I was reprimanded, rejected, and shamed from many directions, so I learned to “hold it in” so I wouldn’t “get in trouble.” I became stoic, but anxious and suicidally depressed by the age of only nine or ten. We teach boys to lash out at bullies and those who contradict them, vocally or physically. We tell boys they have the right to stick up for themselves. So autistic boys become conduct problems when they begin to have conflicts with peers, but girls are taught to be quiet and well-behaved at all costs, and to look to themselves for fault first. We lash in, not out. So as time goes on, unidentified autistic girls begin to internally torture themselves for being odd and friendless, and we become dangerously mentally ill from not being allowed to be mentally different. By the time I was  a young adult, I was deeply confused in a way that only others who have to hide their basic natures and mannerisms can understand – LGBTQ people, for instance, suffer the suicide attempts, self-harm, eating disorders, estrangement, and addictions that many undiagnosed neurodiverse individuals also experience in young adulthood. I myself became a promiscuous binge drinker who self-harmed to relieve the immense internal pressures I couldn’t identify. My true self was screaming to be let out.
  3. You are gaslighted by everyone in the world until you break. I was continually told that when I was overwhelmed by events and situations and phobias, I was being dramatic, or looking for attention, or exaggerating my distress even though I knew I wasn’t. When I had what I now know are meltdowns, I was made to understand that I was just weak, hysterical, and, again, not trying hard enough to be normal and control my responses. I was “making too much of things” though I now know I should’ve been much more insistent that I was unwell. Since the majority of those in your world are not autistic, they don’t understand that you can’t “just ignore” certain distressing sounds, tastes, or sensations. It does not take very long for you to begin denying the veracity of your own perceptions. I also couldn’t filter out the moods of the people in my vicinity either. There is some unplumbed ability that many autistics have that enables us to “sense vibes” from other people. Though I have a difficult time reading facial expressions and extrapolating the reasons for others’ emotions and behaviors, I can physically feel the overriding emotional tone around me. When I had a teacher who was angry and dissatisfied, her mood and anxiety would leech into me even if I understood that she wasn’t angry at me specifically. The same goes for the workplace. If it’s a tense environment and I can’t remove myself from it, it will infect me and no amount of positive self-talk or relaxation exercises can change that. I’ve tried. I feel everything and everyone it’s often too much, which is why I isolate. Essentially, you aren’t gaslighted by a single abusive person or a bad family; the entire neurotypical world does it to you and you begin to automatically doubt your senses, impulses, and survival instincts. This is also very dangerous.
  4. Masking teaches girls to be unquestioningly compliant. I was being asked, from a very young age, to constantly sublimate my needs and ignore my level of discomfort in order to make others more comfortable around me. For instance, when I was old enough to get a driver’s license, I didn’t have any interest in driving – I wasn’t ready yet. This is common for a lot of reasons in autistic people. Yet, I was not given the option of holding off on driving because my parents were tired of schlepping me and my sister to school and activities. It might have been less stressful for them, but being expected to drive introduced a great deal more anxiety into my day to day. My needs are not as important as other people’s, is the lesson I internalized and have yet to unlearn. When situations got more risky after leaving for college, I was unable to assert myself at all. I’d never been allowed to say no. I didn’t know my comfort level even mattered. Like many Southern women I was taught to serve others, make guests comfortable, and never be argumentative or contradictory. So I found myself in situations that were dangerous, and had no idea how to extricate myself to a safer place. I pushed my own limits to the point that I would melt down and fail to keep my responsibilities. I still have a difficult time coming up with the words to refuse a request made of me. This is one of several reasons why over 80% of all autistic women, even the smart “high-functioning” ones, are sexually abused, assaulted, or exploited.

These are universal issues for many women and men on the spectrum who’ve lived undiagnosed into adulthood. The thing that makes me the most angry besides the above is that because I flew under the radar for so long, I wasted over half my life in extremis. In deep isolation. In jail. Exhausted. Trapped in my own loud, garbled mind. Close to dying or wishing for death or begging for death to wait.

My diagnosis set me on a path of grieving for the time and the self and the life that I lost. I’ve stayed up nights playing the “What If?” game. What if I’d been born later when there was greater awareness of Asperger’s and autism? Would I have been identified or not? What if I’d been accommodated from an early age? What might I have accomplished by now? What traumas might I have avoided? Who would I really be? Where would I be? Would I have money and respect and a job?  Would I have a family? A husband? A real best friend? Would I be better off, but a worse person? It goes on and on.

Mostly, I’m angry that I’m still alone. I’m afraid I will have to make my peace with living apart from others, mentally, spiritually, physically, and socially. I’m afraid that knowing these things about myself will not improve my situation. I’m afraid no one will ever deign to help me. I’m afraid of the inside of my head. I’m afraid I’ll never find my people.

 

 

Author: scidoll5000

Female genius and American essayist.

8 thoughts on “Why I’m still upset about my ASD diagnosis”

  1. This is a great post and is really helpful in crystallising thoughts on difference. I hope you do write your book and get it out there – it would help others and would add to a growing volume of work that is needed to counteract all the disinformation by the so called NT “experts”. Having worked in a SEN environment with NT females I was appalled with how they are controlling the narrative and they shouldn’t be. They are utterly clueless and seem intent on trying to mould Autism into what they deem acceptable.

    I understand your anger – I am not sure what the answer is but would say avoid the medical profession. I identify with all you say – it seems such a waste and it stokes anger, but without trying to sound cheesy – you have a gift of writing and communication – your perception is priceless – use it to redress the balance. It is definitely an Autistic gift. I worked with a young man who had similar and I urged him to do the same. Autism gives a unique perspective and can make for uncomfortable reading by NT’s – so keep writing!

    Liked by 2 people

    1. I’m in Tennessee here and I’m not familiar with SEN. What does that stand for and what are some of the issues with it? It sounds like it doesn’t treat people with Asperger’s with respect. And I have largely broken with the medical profession because I’ve already been put on every drug and combination of drug. I only figured out what my condition was after I had carefully weaned myself from all drugs so I could get a true baseline in my mental state. I’ve not been able to find a counselor to speak with who knows as much as I do about women on the spectrum, so how could they help? Thank you for reading and sending feedback! I appreciate it a lot. Cheers!

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  2. Reblogged this on Laina's Collection – sharing Aspergian/autistic writing and commented:
    Yes 😊 This post sums up my struggles, too! It’s not so much the Asperger’s/autism that is the bad thing, it’s the lack of understanding that persists in a largely nonautistic world and especially the symptom-based medical and mental health fields. This very thorough post expresses so well the very real consequences of that lack of understanding. I know I’m preaching to the choir here, but this is really worth sharing! ❤️❤️

    Liked by 1 person

    1. Thank you so much for reposting Eartharcher! I’m going to focus any published writing of mine on the issues facing women and autistics with high IQs; the world thinks we aren’t all that affected, but, as you know, we certainly are. Thank you for reposting!

      Liked by 1 person

      1. You’re very welcome! I’m really interested in everything you have to say! I’m in the group you describe myself 😁. So cool to know we’re not alone and to find other (awesome!) people out there!! 🤗🌺🌺💖

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  3. Your words bring me back to when I was diagnosed. I was 28, and had spent more than a year in and out of residential eating disorder facilities, and inpatient psych units. The psychologist who diagnosed me that without treating the autism, all my other psych issues were essentially un-treatable, and that’s why I hadn’t made any progress. I was so mad that I’d been trying so hard for so long, and it had been for nothing. I could have amped up my trying to 1000% but since I hadn’t figured in autism, it was in vain.

    I don’t want to make you any reassurance that things will “get better”. It’s not my place, and I can’t see the future. However, this community is open and accepting, and in my experience, will be you “people” if you want them to be. In the meantime, being angry is a very appropriate emotion for people in our situation. Maybe make it constructive? I’ve got to tell you, some of my favorite art (whether painting or drawing or writing, or in my case smashing a scale and making a collage with it) has been created by channeling anger. Also, definitely keep writing!

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    1. I am channeling this fury into a productive thing. I am on the planning board of the Southeast Adult Autism Symposium in Chattanooga, TN. I am also giving a lecture at it in July on how we are vulnerable to predation and how to avoid it. “Wallflowers are easy to pluck: Safety Skills for Aspies” Please come if you can! And thank you for reading.

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      1. Congratulations! I’ve noticed that neurodiverse people are drawn to advocacy for themselves and others. I think that Tennessee may be a little too far from St. Louis, but if someone films the lecture, I’d love to see it!

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