Making Sense of me, understanding my autistic diagnosis in my thirties.
Getting diagnosed ADHD in November 2020 and Autistic in April 2021 (at 34years old) was like finally being handed the keys to myself. Those keys (and medication) saved my life. That is not hyperbole. Memories have come flooding back but now I see them through a lens that makes a lot more sense to me.
Silly things made sense! Like my love of tiny utensils, not being able to sit in chairs properly, my obsession with animals, why certain smells are enough to take me out, and finally the answer to my lifelong question, “why is everything so loud?”
Big things, too.
As a child I acted like a cat. My name was Mabel. I was a cat at school too. I did a lot of “weird” things. I was bullied a lot, I’m sure you could have guessed. I remember sitting out in the grass field alone at recess searching for four-leaf clovers. The other kids didn’t allow me to play. I wanted to be Indiana Jones, but girls aren’t allowed to be boys, they’d say.
That didn’t make sense to me then and it still doesn’t now. What makes Indiana Jones a boy? What made me a girl? Why can’t I be both and all the things in between?
I thought everybody’s behaviors were policed like mine were. Assumed everyone had heard “you’re being weird,” or “stop. You’re so embarrassing,” hundreds of times before adolescence. I couldn’t understand why I just never seemed to understand math. I thought I struggled in school because the teachers said I was brilliant but didn’t “apply” myself or, maybe I really was just not smart. But the number of times I was called “gifted” added confusion. How could I, in middle school, test “college-level” language arts but when in actual college couldn’t pass basic, elementary level algebra? I never got a college degree because I didn’t know I have a learning disability (dyscalculia). I knew I was doing this being a person thing wrong, but I couldn’t seem to figure out how to do it right.
I learned by watching. And I grew up with my filmmaker brother, so we were always watching boys. I wanted to be Aragorn, not Arwen. Eowyn would have been fine too, though. I have ADHD too, so my special interests can fluctuate. I can be obsessed with something for a few months, and then never think of it again. Some stay with me forever (LOTR)
When I went to prom, we had to take a Breathalyzer to get in. I stood in line, anxious as all hell. I HATE queueing (Disneyland is hell on earth for me), and I’ve never had to breathalyze before! I don’t know how to do it! There are people everywhere, watching. I don’t go to this school. My friends chatted and laughed in line while I focused intently on the task before me. I watched as one by one, teenagers breathed into the tube as I took mental notes. Stand here. shoulders here. hands here. When it was my turn, I panicked. I asked for instructions, he said “just breathe like normal into the tube.” I said, okay… put my lips on the machine and sighed. That was how my brain translated “breathe normally through your mouth with your lips closed around this thing.” Everybody laughed at me. This type of thing happens all the time, still.
When I am going to a new place, I research it. I need to know what the food options are, how the lighting and ambiance are, what the layout looks like, and prepare myself for it. I didn’t realize this is something I have done my whole life that most others do not do. I have to feel prepared and work through every scenario possible. I have ‘scripts’ in my head for social interactions, and I like to arrive early so I can go straight to the bathroom (it’s almost always in the back) and get a lay of the land to plan my escape if necessary. I will always opt to sit outside if that is an option. I like to ‘fly under the radar,’ and generally don’t enjoy being perceived.. especially if my shoulders are showing. But I am an engaging and funny storyteller in the right situation. I change outfits multiple times a day because I’m just not comfortable in that thing anymore. Fuck all tags, itchy things can burn.
After socialization, I sometimes go nonverbal. At parties or gatherings, I walk away from conversations that are boring without a word and rarely ever say goodbye. There always comes a point where I just have to go. So, I go.
My accent changes and the echolalia is real. Never before did I know why I had to repeat sounds, or why I make the sounds that I do. I am curiously good at copying accents and dialects just by hearing them yet I can’t watch/process things without subtitles (auditory processing disorder). A quick google offers this fun list of linguistic ‘oddities’ in autistic folks:
* verbosity
* abrupt transitions
* literal interpretations and miscomprehension of nuance
* use of metaphor meaningful only to the speaker
* auditory perception deficits
* unusually pedantic, formal or idiosyncratic speech
* repetitive speech and oddities in volume, pitch, intonation, prosody, and rhythm
* echolalia (repetition of what has been said to them)
Which, if you’ve ever had a conversation with me will likely chuckle and agree.
I’ve always benefitted from written instructions (cheat sheets, I like to call them) and visual aids. Instructions like, “do this” without the how or why are nearly impossible for me to accomplish, and because everything is nonbinary the other side is equally frustrating. I used to run a hat shop in LA and my boss (an incredible woman) would excitedly ask me how I achieved a thing but it was impossible for me to explain. I have these instincts and I just know stuff. I don’t have agenda, I had an idea and I did it and it worked. I can’t explain it, Michelle!! With her help (and a lot of patience), I did get better about that, and a lot of other things. She helped me communicate more concisely. She’d say, “Tara, I love how your brain works, how much attention to detail to pay, and your stories but… let’s simplify. Get to the point.” Obviously, I’m still long-winded, and likely always will be because YOU NEED THE WHOLE PICTURE. It makes me laugh because I literally cannot stand listening to long boring stories and will interrupt folks to ask if there is a point and can we maybe start there instead.
When I was in my early 20’s I had seizures, we didn’t know why so they said I was epileptic. A few years before that, I had my gallbladder removed after months of excruciating pain (that I was not believed about). I did not fit the criteria (old, overweight, man) so they didn’t think it could be that. Turns out seizures and tummy area issues are common comorbidities with autism. I have historically had a difficult time explaining my feelings or sensations in my body. I couldn’t tell my parents what was wrong when I didn’t feel good, just that I didn’t feel good. So, they understandably didn’t believe me and thought I just didn’t want to go to school. I walked on a broken foot for 2 weeks before realizing it really hurt. I don’t know when I am hungry. I don’t know when I am tired, and I have a hard time expressing happiness at the moment I feel it. I’ll often let my friends know after the fact that I had a wonderful time and my favorite takeaways. It sometimes takes me time to process things and decide how I feel. I have a high pain tolerance and often don’t notice I’ve hurt myself until later, but sometimes I will have vivid and intrusive thoughts that cause me to faint. I imagine how I will die in nearly any situation, and it is almost always absolutely horrific. I have never seen the final destination movies, but I have some great material stored away if they run out of ideas.
I have a terrible memory and no concept of time. There are significant gaps where I have no recollection at all. I have struggled to recognize faces. For example, you show me your school class photo, I will not be able to pick you out. Photos of my own parents as children are unrecognizable to me. I pull my eyebrows out (OCD), pick at my face and body, wiggle my toes, fiddle with my fingernails, and need MUSIC. These are all examples of how I stim to regulate. I learned to mask so well that sometimes I still wonder if I’m making it up but everything for me is heightened all the time. It’s incredibly exhausting yet amazingly vibrant. I struggle to understand why others don’t feel and care in the same ways I do.
I don’t like small talk and I only know how to answer “what’s up” because I’ve seen ya’ll answer that dumb question a bazillion times. The answer is always “not much, you?” It’s not even a question that makes any logical sense. honestly, it fills me with rage. “How are you,” is equally irritating because NT folks don’t actually want to know the answer. If I am not well, and I tell them that, they look at me like I am insane and how dare I tell them the TRUTH. I am constantly frustrated by the way neurotypical people communicate. Why don’t you say what you mean? I’ve decided to stop trying to read between the lines and force people to be direct with me. I am tired of trying to translate the intentions and meanings, and I hate making assumptions. I like knowing as many facts or details as possible so I can come to an educated decision or conclusion. There is this idea out there that neurodivergent people don’t understand social cues but I think we do. We just don’t understand inauthentic social cues. I have an intrinsic desire for genuine authenticity, I can see that you are in pain or suffering and I am uncomfortable ignoring that obvious detail to talk about the weather or something else mundane. To me, it is kind to be honest, direct, and compassionate.
I have no tolerance for injustice and I will call it out every time I see it. It gets me in ‘trouble’ in a lot of social situations but again, I see this as a kindness. Nice is fake and performative. I’ve lost a lot of friends because of my “high expectations.” One of my favorite compliments (not sure if it was intended that way or not) was that I am steadfast in my beliefs. Integrity is important to me; if your actions do not align with your words I am confused and have to ask questions. Some people don’t like questions and respond defensively like I am trying to ‘catch’ them, but I am usually trying to understand and gain clarity. I misunderstand and am misunderstood often. Questions help so I can better communicate in the future, or just promote a line of questions that lead to an ah-ha moment for all involved. I avoid giving my opinion (unless explicitly asked) and will instead try to ask questions that I think may help them find their own clarity without judgment from me. I understand it can be uncomfortable but it is not a trick or a manipulation. My whole life I’ve had people twist the things I say, claiming meanings in my words that aren’t there — and they expect me to do the same but I won’t. I can’t. It’s exhausting. For example, when you say something racist and I say hey did you know that is a problematic thing to say because___, and you say IM NOT RACIST!! …… What you should have said is “I don’t want to be racist.” and then suddenly I’m too sensitive. And now suddenly instead of having a compassionate but tough conversation about you, we’re having a conversation about my perceived character flaws. This cycle is super obvious to me, but so many of ya’ll really struggle with it.
It’s been hard to keep friends and I’ve been lonely most of my life. I love humans but I like very few people. I require integrity and accountability in my circle. I see things others don’t see. I recognize patterns without realizing I recognize patterns, and I am usually prepared for whatever is going to happen next because I am basically Doctor Strange and can see every possible outcome. I feel deeply and intensely and I can usually tell when people are lying to me, even if they don’t realize they’re lying to themselves. I know when you say one thing to my face and another when I am not around, energy doesn’t lie. I can feel it in my body. I know when something is disingenuous and I will have questions.
Which may prompt a statement like, “You’re so sensitive.”
To which I have started to reply, Yes, thank you for noticing. Can you imagine the bravery and vulnerability it takes to feel deeply for myself and others? I consider it one of my greatest strengths.
Celebrating the life I have while grieving the life I could have had is an odd space to occupy, but I’ve decided to take up all the space I can. I want to be clear that I do not “suffer” from autism. I am autistic and I suffer, because of the way the world treats autistic brains, and from a system that isn’t set up for me to succeed.
Now, I’ve heard a lot of folks discounting my diagnosis’ because they (incorrectly) assume that I self-diagnosed. I have some problems with this and not because I care what you think of me, but because you may harm someone in your life with such an ableist perspective. Do you really think people want to admit later in life that they have been disabled this whole time? There is an overwhelming amount of grief in realizing your brain works differently and had you known, maybe you would have had more tools to support your needs. I am glad to know who I am but that does not discount grieving the life I could have had, who I could have been, or what I could have accomplished had I had accommodations, support, and compassion instead of the undeniable trauma that comes with moving through life undiagnosed and unaware.
First of all, getting a professional diagnosis isn’t always easy. In fact, most of the time it’s not. I got ‘lucky’ — if you consider finally having the tools to myself yourself at 34 lucky. Getting professional diagnosis’ are extremely expensive, there aren’t that many good doctors who are trauma-informed and educated on neurodiversity, a lot of families have strong opinions related to disabilities and mental health that make seeking professional support complicated or dangerous, amongst a plethora of other reasons. A lot of people have such a strong misunderstanding of what these things even are that it’s not even on their radar (like me… I just thought I was broken and weird). Up until very recently the only studies done on autism were done on young white boys, and autism presents differently in every single person and, is like everything, nonbinary.
So keep in mind that when someone has always felt different and finally begins to realize that these could be signs of a developmental disability or neurotype and they come to you, know that is a privilege. It is highly likely that they have only told a few people, people they trust, who they think will listen to them, affirm and validate them, and possibly even support their journey. If someone in your life tells you this ah-ha of theirs you are lucky and should support them. “What if they’re wrong?” you ask.
I am glad you care about them and while they may be wrong, you don’t know them better than they know themselves and your opinion is not the point. The point is that this person is at a stage in their life where they are questioning their brain type and they need support.
Disabilities, Mental Illnesses, etc. are still controversial in many communities. If someone shares that they searched up a controversial topic, admitted they relate to it, then there must be something there and you should probably listen to them. DO NOT tell them that only a professional can diagnose them, they must be wrong, or they don’t look (like) it.
And yes, this is open to all kinds of Disorders and Differences because the logic here is that you need to support your friend at that moment applies to them all.
Thanks for coming to my TedTalk
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