Color wheel.

I was diagnosed as on the autism spectrum when I was about 15 years old. At that time, I had no idea of what the diagnosis meant. I shrugged it off, because I didn’t feel any different than I was before I had been told.

However, other people began to treat me differently (in a good way). They seemed to have more patience and understanding when I was struggling with things. They wouldn’t get so upset when I had trouble with communication or overstimulation.

At one point, my mom gave me a chapter of a book to read. It listed some symptoms different people on the spectrum might experience. I began to realize that my traits I thought were common were not always traits most typical people might have. I began to share my experiences, hoping I could help others to better understand, too.

When I created my old website and blog as a self-advocate, I started out telling people I have Asperger’s. I didn’t really think anything of the term. In my mind, I didn’t see myself as either “a person with Asperger’s” or “an ‘Aspie.’” In fact, I saw myself as both. I titled my book “I Have Asperger’s,” and my Twitter name used to be “Aspie.” (It’s since been edited.)

Then in 2013, the term “Asperger’s syndrome” was dropped from the DSM. Suddenly I had no idea how to explain my diagnosis. Although I’ve technically never lost the diagnosis, some people would insist that Asperger’s syndrome didn’t exist anymore. Even medical forms I would fill out began to drop the term. All that was left was “autism spectrum disorder.

I began to notice arguments in the autism community as well. Are people “autistic?” Are they a “person with autism?” As someone who didn’t even have their diagnostic term recognized anymore, I felt as though this argument was a bit nit-picky. To me, it all meant the same thing, but the argument would bring more confusion to those who didn’t understand the term at all. I decided to avoid the confrontation from either side of the debate, and began to refer to myself as “on the autism spectrum.” This phrase also helps explain the diagnosis a bit more clearly.

From what I understand, some people don’t like this phrase because they believe I’m talking about a straight line with one end being so-called “high functioning” and the other “low functioning.” However, when I say I’m “on the autism spectrum,” that doesn’t have to refer to a linear spectrum. It doesn’t mean there has to be one end or another. Take a color wheel, for example. It still contains a spectrum of colors, but it’s in a circular diagram.

Yes, I’m “autistic.” I’m also “a person with autism.” And I respect that other people may prefer to use one phrase or the other. While I won’t correct people for using either of these phrases when referring to me, I personally don’t like to use them, because they bring out arguments. So I’m “on the autism spectrum.” This is a less confusing way to explain the diagnosis. Not only does it avoid arguments and keep people from telling me the term for my diagnosis is gone, but it also reminds people that autism is in fact a spectrum.

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One of the hardest things for me to deal with as an autistic person is people not understanding what life is like on a daily basis. Nobody has any idea how much energy goes into ensuring I don’t mess up too badly or that I “get things done” when they need doing. Well, they might, but many people in my life didn’t until I received my diagnosis, and even then, it’s hard for them to understand sometimes.

Ever been so tired after a busy day that you sit down and before you know it, you’re waking up out of nowhere and it’s the next day already… when you weren’t even finished with the day before? This has been my reality since I was young. A few hours of an activity that didn’t involve being at home, and for the next day or even two, I’m so tired I can’t do anything except lay around and sleep. The exhaustion of autism is real and tangible in my everyday life.

Each day it takes every single bit of energy I have to focus on tasks for the day. If I don’t focus, my mind wanders and before I know it, hours have passed and I haven’t done a darn thing that’s important. I can’t sit and do nothing (literally, do nothing) because if I do, I fall asleep. I must be doing something – writing, reading, on the computer – that is engaging my brain or that’s lights out for me. I can’t sit on the couch without falling asleep, ever, unless I’m doing something. And no, watching TV doesn’t count. It’s easy to oversleep this way, which makes me more tired, and it’s harder to recover from. Some days I sleep 12 hours, others I get eight hours split into two for days on end and I’m fine. I don’t “crash” except after I’ve been out into the world.

If I don’t focus on walking up the steps, I will trip. If I don’t watch very, very carefully when I’m pushing a cart in the store, I will misjudge distance and run into someone or something. I am hyper-vigilant while driving to avoid misjudging and by the time I get home, I’m exhausted. I get majorly fatigued from being out in the world with its sound and smells and all around environment surrounding me, assaulting my ears and eyes and skin from every direction. I wear headphones as much as I can to block out noises and listen to music, because I can’t handle silence, but I can’t do this while driving.

I’m almost always cold. It can be 80 degrees out and I’m wearing a sweater because that’s how my body is. I like to joke that I’m walking air conditioning. At bedtime I have to sleep with a comforter on me, even in the summer, and need to sleep a certain way in a certain position — this is a quirk that was exacerbated by my leg injury.

Clothing is a big one. Shirts must be v-neck in order for me to wear them because otherwise, I feel as if I’m choking. No lace or itchy fabrics can touch my skin and I can’t stand to be lightly touched. I’ve been known to smack at myself when something lightly brushes against me because I can’t handle the feeling. I prefer long sleeves nearly all the time and pants because I hate having my legs uncovered. I’m unable to go barefoot unless it’s to get in the shower and that’s only because wet socks is an even worse feeling than bare feet in the shower. Tennis shoes are my go-to footwear, although I will wear dress shoes if I have to… but only for a short period of time and if they are too awful, I’ll take them off no matter where I am at the time!

Ugh, eating. Taste and texture issues are plenty. I rarely try new food in public places because chances are I won’t like it or am unable to eat it and I will have wasted money. I eat the same foods over and over on a daily/weekly basis with slight variations among what I can eat, and other than salt and pepper, my system is unable to handle the majority of spices. It’s not that I won’t eat food, I can’t, and yes, I do try again occasionally. This has become a problem at random times when people judge me for refusing to eat something. Here’s the thing… if I don’t like the smell, I won’t eat it. This is hard to explain, but my body knows it will make me ill and protects me. Why is that so hard to believe? I don’t know.

I take everything literally. I don’t take as much personally as I used to, but that also requires a mental effort to keep my brain from freaking out in that area. I am able to “give” sarcasm, but most often do not understand when I’m receiving it unless I know the person really well. Written communication is better than verbal, and I cannot effectively engage in verbal arguments because my brain can’t keep up. I can’t recall how many times I was asked “did you hear me?” because when someone talks to me, I will stare blankly for a few moments processing what they’ve said before I can respond, and it’s often not fast enough to please the person talking to me. This is bad when it comes to working, for obvious reasons.

When I’m upset, I have to “verbally vomit” all the negative feelings in order to get over them, otherwise, I will start shaking and become physically ill from the overwhelming emotions. This often makes people think I’m being a “negative Nancy” and sometimes even gets me called pathetic. I feel I have the emotional development of a 16-year-old and often react before thinking because of my inability to “see the potential consequences of my actions,” which continues to elude me to this day. I am 32!

For a long time, I hated myself because of all this, and others picking me apart because of it made it worse. And unfortunately people can still get to me, especially when I see people referring to those who are autistic as monsters or brats that just need their butts kicked.

Let’s get something straight. You can’t beat or smack or discipline the autism out of anyone. It’s a neurological issue, not a discipline issue. Period.

Know how I learn? Repetition. That was the problem with college with me. It wasn’t my type of learning environment. Every job I’ve ever had, they showed me two or three times, made me do it, and I got it forever! Over and over I learned by seeing and doing, not by someone telling me what to do. No matter how many times someone gives me verbal directions, I will never, ever remember them. I need to see them. It’s this way with everything!

Ever experienced having to tell someone something over and over, only to get ticked because they don’t “get what you’re saying” after the first or second time? Yeah, nothing like being on the receiving end of someone’s anger over that sort of thing, especially when you’re intelligent like I am. I felt “stupid” for so many years; it did a number on my self-esteem.

I will never “figure things out on my own” because I just can’t. Not don’t want to, can’t. I know this because I’ve tried. I always did better in jobs where there were rules and directions and things to do in a certain order because that made sense to me. I could learn that, no problem, which is often why I stuck with fast food or retail because anything that left things up to me to decide was a bad idea.

The fact I know what’s happening with me and how I react to things doesn’t mean I can stop those reactions! That’s like knowing you are allergic to peanut butter and saying, hey body, stop doing what you’re wired to do because I said so! Silly, right? If I could do that though, I would, because nobody enjoys being out of control.

I’ve changed and grown, and continue to change and grow, but it’s a terribly long process that required a lot of time and effort and pain. Unfortunately, I learn by doing, and sometimes that meant doing the same crap over and over again until I “got it right.”

By the way, that’s not very effective in life, and people aren’t very forgiving of what they see as you repeating the same mistakes over and over again. But hey, I was left to figure it out on my own for way too long and in many ways, that’s still true. I have more support but nobody wants to tell a grown adult what to do all the time. I “get” it.

But you know what? That saying is true… the one about meeting someone who is autistic, and you’ve met one person who is autistic. Generalizing is bad in this arena as it is in many others. I am speaking for myself here, although I’m sure many will be able to relate.

I’m not lazy because I don’t want to do something. Maybe I can’t despite what everyone “believes” I’m capable of. I’m not “stupid” because I don’t get it. Explain it to me differently. Figure out how to make something clearer if I’m not understanding.

I’m not worthless or useless or anything because I can’t function like you do, or I need more sleep, or after a day out I need two or three days to recover. Nor am I spoiled because I have to have things a certain way to function, or I won’t try a new food out in a public place where I’m likely to get sick. All of these things are part of me. They are how I deal with the world around me so I can be an adult, just like you.

This is just who I am. And all this, coupled with dealing with the world that doesn’t quite know how to deal with it, is exhausting.

And chances are it’s how someone you love is, and what people like me need are the understanding and acceptance of others. Want to help? Figure out a way to help instead of sitting there making judgments about something you are incapable of understanding. Because if you aren’t autistic, you don’t get it and I believe you probably never will. If you don’t know what to do, ask, and please be specific.

Realize how difficult it is not to “be normal” in this world. People often tout those of us unable to “be normal” as failing to take “personal responsibility” when things aren’t going well and accuse us of “making excuses” because so-and-so did it, so therefore, everybody else can too. This is an unsound argument — how many things can’t you do that somebody else can? Tell me, are you not a football player simply because you aren’t trying hard enough to become one? What about a doctor? Is the reason you’re not “doing it all” simply because you’re too lazy to try? None of these things take skill, right, just “try hard enough” and that’s all it takes.

Of course not. That’s absurd, right? It’s how the world sees me though, especially when I haven’t managed to become the “productive adult” I’m expected to be. Why?
Because it’s easier to believe we’re failures, to see our quirks as impediments to the workplace, and our emotional outbursts as negativity that must be squashed. Except you know what we actually are?

We’re true to ourselves. When we finally realize there is nothing wrong with us other than in the eyes of society, that’s when we’ll truly realize our potential. When we’re allowed to twirl and jump and speak our minds no matter where we are, when we’re free from the limits of a day job that forces us to sustain an unsustainable sleeping schedule for our bodies, that’s when we’ll excel.

And all the good intentions in the world to help us fit in aren’t helping because in order to do that, we have to lock away the things that make us beautiful. Society is so focused on what causes autism and how to “fix” us, they don’t see the destruction they are causing, how they are trying to erode and obliterate us instead of understanding us.

Understanding me.

Yet I am not a puzzle to be solved. I’m not something that needs dissecting and examined.

I am a person with neurological differences, but under all that, I am a human who deserves respect. A human who wants love and a family and a fulfilling life as much as many others do.

We autistic people are beautiful and exceptional and loving. We are your friends, your siblings, your partners, your co-workers, and more.

And underneath that, we’re all different. Some will excel at living a “normal” looking life and they are happy, but there are many who won’t reach that level, who have limits they cannot exceed.

Ask yourself honestly: what is so wrong with being different? And if you find yourself saying that you don’t think there is anything wrong with being different, really ask yourself if that is true.

Do you rush to judgment?

Do you look at a kid screaming in the store and think how that person needs to shut their kid up, or take parenting classes, or about how you could get that kid to behave if you were the parent? Do you get annoyed when someone fidgets or moves their body in an awkward way that doesn’t fit with the public place you’re in, or if you see a grown person twirling or jumping or doing something “odd” in a public place?

When someone doesn’t automatically act in a way you find appropriate, do you believe them “stupid” or lacking manners? If you try to explain something verbally once or twice or even three times, do you start to believe the person is incompetent or shouldn’t be working at their job, instead of thinking you are upset because they aren’t working to your standards, even if they are trying their hardest at their own level?

If you ask a person a question and they simply stare at you, perhaps blinking rapidly but not speaking, would you assume they didn’t hear you? Would you speak slower as if you thought this would suddenly make them respond to you? Do you find a person dumb when you ask them a question and the way they answer isn’t exactly what you are expecting from the question?

Is there someone in your life who, when you ask a simple question, goes into a spiel about something that seems completely unrelated after giving you a short answer to what you’ve asked? Are you frustrated by telling someone to do something and feeling as if they are ignoring you because they didn’t do it? Ever get annoyed with someone who you give instructions to find something, only to have to find it yourself because they couldn’t find it even though you only told them where it was, but not to them, you weren’t specific enough?

These are all things I’ve personally experienced and let me tell you, most of them are embarrassing for both me and the person perpetuating them against me.

Of course someone doesn’t have to be autistic to do any of these things, but can you imagine this sort of behavior on a daily basis? Not on the receiving end, but to actually be this way your whole life and unable to do anything about it? How many adults out there are just like me, but haven’t been diagnosed? Can you imagine how hard life is for these people who don’t know they are autistic, and the kind of ignorance they have to put up with on a daily basis?

The same kind of crap I had to deal with for years from people who simply thought me “stupid” and useless?

How many people are hurting from those who treat them badly over something they can’t help… and why are we OK with treating others like they are less just because they don’t perform like a “normal” person does?

Lastly, you know why there needs to be autism acceptance and not simply awareness?

Because awareness is standing there next to an autistic person and knowing we are autistic… and that’s it. Awareness is pointing at a group of autistic people and saying, “they are autistic!” and thinking that’s all it takes for change to arrive in how we’re treated. Like acknowledging us makes our lives better instantly.

But it isn’t. It’s not helping us get a job, or live better lives, or assisting us with those things we can’t do on our own. It’s not getting rid of the idea that the only reason people don’t succeed is because they must have a character flaw, or an inability to take “personal responsibility” for their lives, a belief that is patently false and disingenuous.

“Failure” in the eyes of society has many more factors than just one person’s individual behavior.

We need more than your awareness. And until people accept autism, accommodate those who are autistic, and help autistic people build lives with the strengths they have instead of focusing on everything they can’t do, things won’t get better for us overall.

Isn’t it time things change for the better, for everyone… autistic or not?

And lastly, you’ll notice I refer to myself as autistic. There is this “autistic person” or “person with autism” debate… I am both. Some people want it one way, others want it another… the point is, we (the ones who are autistic or have autism) are the ones who should decide that sort of thing and what to call ourselves, not somebody who has no idea what it’s like and who isn’t autistic.

If you know someone like me or someone with a disability, ask that person what they want, what they feel and what they need. Support is always appreciated, and loving us as we are is the most important thing.

Follow this journey on Violet Haze.

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Thinkstock photo by Marjan Apostolovic.

 


So, I watched all eight episodes of the new Netflix series, “Atypical” in a day. And yes, I’m upset they didn’t include an autistic actor. Yes, I think it’s wrong autistics weren’t consulted in the creation of a character. Yes, it was another show about a more “high functioning” autistic teen. Yes, it was another male instead of a female. Yes, there were stereotypes — again. I still loved it.

Perhaps I should have prefaced that first paragraph with the fact that I am not a person with autism. I am a neurotypical mother who has three children, one of whom has autism. That being said, “Atypical” is not a perfect show, but, is there perfect show besides “Breaking Bad?” As a mother of a child with autism, an autism blogger and an autism advocate, for me, “Atypical” did what it was created to do: it entertained me. I laughed, I cried, I sobbed big, ugly tears and I even shouted, “Hell yeah!” more than once.

It also brought back dark, lonely times. It reminded me of where I once was and where I am now. I felt the loneliness, the uncertainty and the guilt. Oh dear heavens, I felt the guilt after learning of my son’s diagnosis, all over again. I sent a text to my 19-year-old neurotypical son who is away at college, “I’m sobbing through episode four of Atypical. I’m sorry if I ever made you feel less by trying to make Ryan feel more. I love you so much.” Then I went to my neurotypical 11-year-old daughter and held her in my arms and said the same. Then I went to my 15-year-old autistic son and said, “Sorry about all the times I didn’t get it and screwed up.” Yep, guilt.

“Atypical” also made me laugh out loud — remember thing I had long since forgotten. But mostly it reminded me of the progress my son, Ryan, has made, as well as the rest of our family as we traveled this unfamiliar road. And although some of that progress, for all of us, was difficult, it was good to watch this series and be reminded: we did it.

 

I think some of us parents would like to see our child represented in a television show or movie, so people would understand autism and our family. But we can’t talk about wanting our child to be seen as unique yet expect Hollywood to create a character who fits every individual on the spectrum. We can’t yell, “no more stereotypes” then be discouraged when our kid doesn’t fit the next character with autism on our television or movie screens.

Many of us loved “Friends,” but did they hit every demographic of every 20 something in the ’90s? No. “The Cosby Show” was a huge hit, but did the Cosby family represent all black families in America anymore than “Full House” was a good representation of white families? I don’t think so. And as much as we love the day-to-day happenings at “Seattle Grace Hospital,” do you think every hospital in Seattle has a McDreamy or a McSteamy? Sadly, no. And for every 20 and 30 something woman who gathered around their televisions with girlfriends to watch “Sex and the City” while deciding which friend in their inner circle represented Carrie, Samantha, Charlotte and Miranda, many weren’t having sex or living in the city. That’s Hollywood folks.

As a mother, of course I don’t want negative stereotypes about autism perpetuating mainstream media, and I know there are many individuals with autism who are unable to work at a technology store fixing computers who are not represented anywhere in the media. But I love that our autistic adults and children are represented at all. When my son was young, there was no Julia muppet, no Max, no Sheldon Cooper and no Sam. At that time, for me, it felt like Ryan was the only child with autism I knew, and for a while he was. And although “Atypical” may continue some of those negative stereotypes, I hope those stereotypes are at least conversation starters: “Oh, your son Ryan has autism? I watched Atypical, is Ryan just like Sam?” For decades, there was no one on our televisions to even start that conversation.

Here’s the thing, of course I made comparisons to my son, of course I made comparisons to myself, but, just like Sam is not Ryan, I am not Elsa. Did I love seeing a family traveling a journey similar to mine on television? Of course I did, but, part of my binge watching had everything to do with hoping that Sam got his happy ending and transposing that hope for my son. Isn’t that what we all want in life and in a television series, a happy ending?

As for my son, Ryan, he had no interest in watching “Atypical” because, “it’s not a Japanese show that includes anime which is much more interesting than what you are describing.” “Atypical” may not be for you, or my son, but for this mother, the creators of the series did what I believe they set out to do: entertain me and give me a glimpse into another family who also has a child with autism. And teach me a lot more than I ever knew about penguins and Antarctica.

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One of my favorite quotes we have in the autism community today is from Stuart Duncan, an advocate who has a son on the autism spectrum. I first learned about this quote when he posted it on Twitter in 2012.

We often say autism is a “spectrum” and this fits perfectly into that definition. When I met Dr. Stephen Shore, another autism advocate on the spectrum who is also an international speaker, I quickly learned about his quote “If you’ve met one individual with autism, you’ve met one individual with autism.”

This quote reminds me that no two people I’ve met on the spectrum have ever been alike.

I was reminded about this recently while speaking about my own journey on the autism spectrum to a third grade classroom. One of the boys who came up to me in Batman pajamas because it was Pajama Day told me after my talk that he was on the autism spectrum. I looked at the boy and smiled. While we continued to talk I was blown away when he told me he knew Dr. Temple Grandin and Stuart Duncan, amongst other advocates. Then he told me one of his favorite quotes…

“Autism is one word attempting to describe millions of different stories.”

I’m thankful to Stuart for authoring this quote for our community to use in conversations like in my exchange with this young boy. We all need role models to look up to. Growing up, I wish I had been aware of people like Stuart, Stephen and Temple. They give me an endless amount of motivation to strive towards what I hope to do in my future, and I hope they will do the same for you.

A version of this article originally appeared on Kerrymagro.com.

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Thinkstock image by Istrejman.


When “The Big Bang Theory” first broke onto the scene, people who learned that I’m autistic would ask, What do you think about Sheldon? Honestly, I became so annoyed by the idea of a comic portrayal of a supposed autistic person that I wouldn’t watch the show, not even to find out whether Sheldon was like me or any of the other people on the spectrum I know. Finally, after several seasons, I watched the show and was delighted. The writers may not confess that Sheldon is fully on the spectrum (saying his mother never
sought a diagnosis), but he has too many behaviors consistent with the rest of us, as different as we can be from one another, to say it is not the case (as Jim Parsons himself has suggested) — and not just in broad strokes. It’s his little quirks that get us right, quirks like Sheldon’s spot.

Viewers of the show all know that the far end of the couch in his living room is “Sheldon’s spot,” a place on which he’s put a “state of eternal dibs.” He has trained his friends to keep off that spot and complains if they use it. In one episode, Howard punishes Sheldon for continuing to claim a parking spot at work that he doesn’t use (a kind of work spot) by violating Sheldon’s home spot with a “nude revenge wiggle.”

When Sheldon’s spot was first introduced, I laughed with surprise. I recognized that spot. I establish one wherever I live or work. I associate it with a particular chair as well as its location, and that spot becomes irrationally important to me. I don’t feel comfortable sitting anywhere else: that spot becomes my home base, or what Sheldon would claim is function “0,0,0,0” in a four-dimensional Cartesian coordinate system. No matter where I go, I establish a new spot, just as Sheldon does in Penny’s apartment, Amy’s living room fort, the lunch table at work, or an Arctic cabin during a research expedition.

Sheldon explains the virtues of his spot through its having the perfect sensory environment, telling Penny, “in the winter that seat is close enough to the radiator to remain warm, and yet not so close as to cause perspiration. In the summer it’s directly in the path of a cross breeze created by open windows there.” Exactly.

In my spot, this strange vehicle of a body, which can feel so awkward and separate from my consciousness, is at home. I’ve configured my spot to cradle the body and accommodate its sensory needs (light, sound, temperature, touch) to such an extent that I don’t even have to think about having a body for long stretches of time. It’s often in a place where I can be alone with my thoughts and media, where I can explore, create, and pursue my interests to my mind’s content. Or, as Sheldon would say, my spot “faces the television [or computer screen, in my case] at a direct angle allowing me to immerse myself in entertainment or game play without being subject to conversation.” It’s where I recharge and feel completely at home in a world in which I often feel discomforted and displaced. If someone wants to visit with me, they know where they’ll find me, at my embassy, the seat that is “the
sovereign soil of my bottom,” so to speak.

When someone “violates” that spot, it’s tough. At one workplace in particular, I came into the office for some of the week and worked at home the rest of the time. We’d just moved into a new building and there weren’t enough chairs yet for the conference room near my desk. My chair had wheels, and so it was convenient for people to drag it in for meetings. They almost always forgot to return it. I’d come in to work in the early afternoon to find
my chair gone. Of course I knew where I would probably find it. I knew coworkers were taking the chair out of convenience and that the chair did not really belong to me. I did not know how to explain to them, or to myself, how important it was that my chair not be moved (or if we’re going to be entirely honest, used). But this was so important that after a number of verbal requests weren’t honored, I sent out an office-wide message requesting that people not use my chair. I stuck a pin through the fabric on the back of the chair so I’d know which one was mine. Since I was sometimes bristly and odd to begin with, people eventually accepted this as one of my quirks. They left the chair alone. Finally, new chairs were purchased for the conference room and the problem was solved.

At the time, I did not know I was autistic; my diagnosis came later in life. But today I often think of Sheldon’s spot as a public expression of something I experience as an autistic, one I can now use to communicate a need in a way people will accept, because they have seen it play out among a group of friends who find Sheldon’s quirks, like his having claimed a spot, irritating and odd but worth humoring because they care about him and his happiness.

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I was diagnosed as autistic at the age of 52. I had worked it out well before then! The realization came when my oldest child was diagnosed at age 11. I have a clear memory of being in the car with him as he had the routine post-school meltdown. “I’m a freak,” he cried and yelled. It’s funny. I was so calm. “Am I a freak?” I asked him. “Really, do you think I am?” He was so shocked! I went on. “Because you are just like me. Like my brother, like my mum and my dad. Are we all freaks?” His stunned face, silent, still sits in my mind. We sat in that car for ages. And I explained how normal he was to me. How familiar. How I understood his manner of seeing, thinking, being. That yes, life would present challenges, but I was OK. Wasn’t I?

Well, I’m OK now. But it took 22 years from the time this darling boy was born before I reached my safe harbor, my autism diagnosis. I had a pretty typical diagnostic trajectory for autistic women. Mental health issues in my teens. First diagnosis – anxiety. No, really? I had already worked that out. And I carried on. The came post-natal depression. The moment my boy was born I stopped sleeping. And he didn’t sleep much either — 45 minutes at a time for the first 10 months, punctuated by screaming. I got up every morning and sobbed as my husband left for work. My doctor told me I was “just” tired, because I was “too sensible to have post-natal depression.”

During my second pregnancy, I had ante-natal depression and five months of hyperemesis – I vomited day and night without respite, except being hospitalized to rehydrate. This couldn’t possibly be anxiety-related, according to the doctors; it was “just” morning sickness. My darling daughter was born and things just got worse. The house was perfection. I cleaned obsessively. The children were routined within an inch of their lives. I barely ate. I started throwing up and having the most dreadful moments of… well, horror. I had to call an ambulance a few times, because it wasn’t safe for me to be home. And yet, not once was I told that these were panic attacks.

Then came That Day. I called an ambulance, got to the hospital and demanded a psychiatric assessment. By this stage, the baby was 4 months old, starving because I was emaciated from being unable to eat and all the vomiting and I was very, very scared of harming myself. The emergency team diagnosed post-natal depression within moments. I was so unwell that the baby and I spent seven weeks in a psychiatric mother and baby unit. They saved our lives. I started therapy with a psychiatrist, went on meds, and had ongoing, weekly support groups. And received diagnosis number two – generalized anxiety disorder (GAD).

As my two darling children grew and I saw my psychiatrist weekly, we noticed that I wasn’t recovering as expected. I seemed to not really fit the “usual” pattern. So along came diagnosis number three, bipolar disorder. I started medication and… nothing. No better, no worse, just the endless same not quite right. Anxiety, sensory difficulties, occasional auditory hallucinations and difficulties with communication. I came off the medication.

We had baby number three. I had five months of hyperemesis again, and later the predictable PND, and spent another seven weeks in hospital back on anti-anxiety meds. I was so relieved. Compared to the bipolar medication, they did help me cope. My sensory challenges reduced, and I didn’t get so worked up about getting things right. Having things “just so” stopped being an almighty obsession. Doing cognitive behavioral therapy (CBT) and mindfulness at my weekly support group helped a lot too.

Life went on — a hectic life with three incredibly quirky, sensitive kids who weren’t coping with the world around them. Bright, inquisitive, but socially unusual children. And that’s when the diagnoses started. In birth order, one after the other. Light bulb moments, one after the other, where each child seemed to come into focus – because they had entered my world. I’d often felt like a failure because my children didn’t respond to what the parenting  world was telling me to do. But they responded – and thrived – when I used my mother’s methods, and her mother’s. When instead of forcing them to do what they were supposed to, I listened to my instinct and did what they needed. And when I accepted there was a name for what my family of origin had been, and that it fit me too. Autistic.

I had another bout of mental illness at menopause, about five years ago now. Only this time when I had therapy, I had something to contribute that altered how my therapists worked with me. I disclosed my children’s diagnoses, but I didn’t yet claim it for myself. But in my own mind and heart, I had no doubt whatsoever. Instead of fighting the anxiety, I was taught to work with it. To accept that anxiety was an integral part of me and to manage its effects on me, and to learn to live with it. With the right meds, the right therapy, and with my own secret self-knowledge, that last recovery was the most successful.

I have never felt so well in my life, because that’s when I started to treat myself the way I treated my children. I realized that sleep was essential – my downtime. I started to honor routine and habit in my life, rather than fighting them. I became conscious of my sensory challenges. All those things I had taught my children to do, I applied to myself. And life has never been better.

As a treat to myself a couple of years ago, I saved up the money and booked an appointment with a specialist in the female presentation of autism. I received my diagnosis. I do not have bipolar disorder. I do have a mood disorder, which is defined by having had multiple episodes of depression. And I will live with anxiety ’till the end of my days. But that’s because I am autistic.

The obvious question is – does it matter that autism was never suggested, investigated or diagnosed? Yes it does. You see, life has been a little too exciting for me recently. I’m not feeling so good, mentally. One child is doing their last year of school, one has had depression, and the third came out as trans. I recently saw my psychiatrist and told her I am a bit worried about myself. And we discussed my autism. Not depression. Not anxiety. We talked about how I have had too many transitions to manage at once. I need to work through, process and synthesize them into new realities. We looked at my need for downtime to do this, and how to make room for it.

She and I discussed my current sensory disturbances. My body has felt encased in mud and like I am wading through the world, feeling the air thick and damp around me, slowing me down. Separating me from… stuff. And the humming in my ears, which I sense as my mind working overtime, trying to catch up with my new realities. In fact, knowing I am autistic made an enormous difference at my appointment.

I don’t need my meds changed. I don’t need to go to hospital. My doctor confirmed it. I need time and space. To respect the messages from my body and mind. To let my autistic brain do its work and find a safe way for me to be. This is knowledge equaling power. Power I never had when my autism lay hidden, its effects unknown and uncared for. Because my doctor recognizes that I am autistic, I know I will recover quicker than ever before. Because knowledge is power.

I am autistic. And yes, it does matter.

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