A List of All the Things That Normal People Can Just Do But Are Now Behaviors Because I’m Autistic

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When I was younger, I was quirky. I didn’t have a diagnosis then, and nobody noticed the myriad of small ways that I managed my sensory world, or if they did they just thought “yeah, she’s a kid, she’s particular and picky.” But then I became and adult and those quirks didn’t go away. I continued to do kiddish things because they felt nice on a sensory level.

And then I got a diagnosis of autism, and I knew that if that had been around for all of my childhood, those quirks wouldn’t have been quirks. They would have been behaviors. There would have been an explicit program introduced into my life to extinguish them. When I was “normal” they were fine, but now that I’m autistic they are signs of my difference, and when you’re disabled every sign of difference needs to disappear. That’s how you survive in the world right? Never stick out, never appear incapable, never ask for help.

This all came into sharp focus for me last month when I was talking to a parent, and as a way of explaining one of their child’s struggles they said “the moment he comes home he always wants to put on his pajamas. I think it must be a sensory thing. What do I do?” I had to look her straight in the face and say “I do that. Don’t do anything.” She looked shocked. I can fake neurotypical decently enough. When I wasn’t diagnosed, no one ever imagined that this was something I should have to change, because I was an adult and I could do whatever weird stuff I wanted to. But here was this mom, convinced that because it was a symptom of autism it was a problem and she needed advice about how to manage it.

My advice? Let it be unless it’s hurting someone. So without further ado, here are all the things that would have been seen as problem behaviors to be extinguished if I were diagnosed as a child.

-Wearing a onesie on a regular basis, sometimes in public
-Chewing on things, all the things, including jewelry that I have specifically bought to chew on
-Having very specific dietary requirements that limit what I will eat (I will never eat fish, have a gag reflex every time I come near tofu, prefer to eat chicken nuggets as often as possible, and typically don’t cook beyond “press the button on the microwave”)
-Eating food that’s undercooked, specifically grains and sometimes raw pasta
-Stimming! I twist back and forth to crack my ankles when I’m standing, or sometimes roll onto the sides of my feet to stretch my legs out. I chew on my lips semi constantly, and when I was a kid I chewed on my hair.
-I will not talk on the phone unless it’s an emergency. I don’t care if it’s considered rude, I have such major anxiety.
-I grind my teeth, pinch myself, or dig my fingers into my arms when I’m upset.
-I lose verbal ability when I’m deeply upset and sometimes will use text instead.
-I periodically will sleep for 15+ hours at a time.
-I use my phone when socializing to manage anxiety (this was just seen as super rude for a long time, but no one told me they were going to use therapy to make me stop).
-I don’t sit upright in chairs unless I’m at work. No seriously, I slide down into them and turn into a weird little ball.
-I become obsessively interested in things and will engage in them for hours and hours to the point of almost hating them (video games, or a particular movie or TV series). Netflix binges aren’t seen as a symptom for most people.
-I wore two watches as a kid. No reason, I just liked it.

A lot of these are things that I KNOW neurotypical people do. But you add enough of them together and suddenly all of them are problems, because now you’re autistic and you can’t do anything that might be weird, or that might be because of sensory sensitivities/executive dysfunction/social issues. Why are autistics held to a higher standard than NTs? I might hazard a guess of ableism, but what do I know? I’m an autistic who still has all these negative behaviors.

Passing Means Always Passing: How Disability Systems Punish Functionality

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I’m hitting the edge of some burnout right now, which is not really news in and of itself (there’s a lot of shit going down in my life), but what’s different this time around is that I’m very actively involved in an advocacy program and I’m seeing a. the types of services and programs that people who are less functional than I am receive and b. how hard it is to access services. Mixed in is the realization that most people don’t think of me as disabled. When I act disabled they get confused, frustrated, and angry. If you’re disabled, you’re generally expected to be exactly the same amount of disabled all the time. But that’s not how it works.

I can generally pass for neurotypical. I can be independent. Until I can’t.

There are two ways that this comes back to bite me in the ass: one is in terms of the services and supports I might want, and one is in terms of the personal blowback that comes from being disabled and neurodivergent. These problems appear either when I start to experience burnout from pushing myself to be functional for so long, or when stresses start to add up and I can’t keep up anymore.

There is literally no system in place to allow temporary respite for people with disabilities. There is absolutely respite care for families and caregivers, but there’s no system that will say to me “sure, take a vacation come stay at this place and we’ll feed you/take care of you, and we’ll cover your lost wages so that you can actually afford to take this break”. That sounds preposterous to me even typing it, because I have been so conditioned to think that I don’t deserve something like that, despite the fact that it would completely change my life for the better, make me more productive, more stable, more happy.

In order to receive services through the government, you have to prove beyond all shadow of a doubt that you are super disabled and really absolutely definitely need services or money. That means that if you are capable of holding down a job, if you make any amount of money, if you aren’t visibly disabled, you don’t get services, much less temporary services until you can get back on your feet that are easily accessible during a crisis.

Most services ask simple questions about your functioning rather than looking at how that functioning affects you. I can work, yes, but it exhausts me to the point that I sleep for 14+ hours in a go at least once a month. I can drive, yes, but it sets me on edge and gives me massive anxiety. I can call and make my own medical appointments, yes, but that’s about all I can do in a day. I have demonstrated that I can do these things, and now I’m expected to do them without any kind of repercussion to my well being because I’m “high functioning”. People don’t notice that they stack expectations very quickly: once you’ve demonstrated you can do one thing, they expect one thing AND.

If you can fake it for some amount of time, the system is not interested in the burnout or the toll it takes. It is not interested in prevention. It barely has the funding to help those who are already in crisis, much less those of us who would prefer to avoid a crisis.

On top of all of that, when you can mask for a while people start to think that that’s who you really are, or that it doesn’t affect you.¬†We’re all so used to hiding our disabilities that when we can’t, it can result in all the ableism we’ve hidden from coming crashing down on us. Jobs assume that if you could complete the task yesterday you should be able to complete it today (and when you can’t you get consequences, or may even lose the job). Friends and family don’t understand why sometimes you can socialize and other times you can’t. It can look like you’re just an asshole if you work very hard to maintain relationships most of the time, but when you get burnt out you stop returning texts and phone calls or forget to reach out, miss a birthday, can’t be supportive.

Underlying all of these problems is the lack of recognition that “functioning” requires lots of other supportive activities: work requires showering and eating and transportation and sure maybe I can do one piece of that but not all of it. Maybe I can afford to maintain a home but I don’t have the spoons to keep it up and no one is around to help with that. Passing means being able to do all of the tiny things that keep up the facade around whatever you do: if you want to pass at work you have to pass enough to go out with coworkers, enough to bus or drive, enough to pack a lunch.

This is horrific for people like me. I can function well enough for long stretches, but one of the most common symptoms of autism in people like me (and particularly women) is exhaustion and fatigue. I am tired all the time. When I have a major event it takes me weeks to recuperate (case in point, my work’s conference and gala were two weeks ago and I’m barely starting to feel human again). If we’re lucky we find jobs and people who understand that our energy and functioning fluctuate, people who will pick up the slack when we’re struggling to get from bed to the car to work. But if we’re not lucky? We push ourselves until we can’t move, we become immensely depressed, we don’t understand what’s wrong with us because shouldn’t we be able to do all the things everyone else is able to do?

There are no supports when you can pass some of the time. It sucks.

Fuck You For Wishing You Could Fix Your Child

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The first draft that I wrote of this post was not fit for general consumption. It was angry. It was heartbroken. I furiously typed out a thousand words in fifteen minutes with tears streaming down my face in grief and fear because I didn’t know how to respond to another autism parent acting as if autism is the enemy.

But I gave it a day or two, and I can engage with the topic again, and so here we are. I think it’s incredibly important to genuinely engage with the fear that autism parents feel without letting them say damaging things, and that is what I aim to do here.

Here’s what I want to push back on: autism parents who in the name of being honest say that they wish their kid could be fixed, that they had to give up on dreams of a certain career or of their child graduating college or high school, that they are giving up hope, or that quality of life just isn’t enough. This post was inspired by one video in particular, but I’ve heard so many parents use the same phrases, or talk about how their child will never do x and that no one else will understand that. Particularly that autistics like me won’t understand that.

My autism is not visible. It’s not “severe”. Many people don’t even believe I am autistic. They think that I don’t get what it’s like because I have a job and I own a house and I’m married. They think that the pain they feel when looking at their severe kid is justified because they’ve had to give up dreams of raising a lawyer or a doctor, of it ever being easy, of being normal.

And honestly I’m so fucking tired. I’m so fucking tired of being looked at like I don’t belong in the disability community because I don’t wear it on my sleeve. And I’m so fucking tired of parents thinking that I’m better than their children because I’ve checked some series of shitty boxes.

When a parent says that they have to give up on the hope of a certain milestone what I hear is that they wish their kid could fake it like I can, and what they don’t understand is that they are hoping their kid can be in pain like I am. When they say that quality of life isn’t enough, they are prioritizing their own need to be normal or to have certain wishes fulfilled over the happiness of their child.

What I want all of the parents who say those things to know is that I have reached the milestones. I’ve hit the goals that you dream about for your parents. And the way I did it was through pain. It was by trying not to be autistic. It’s hard to explain exactly WHY all the things that went wrong did, but here is how I felt while I was graduating from high school and getting jobs and going to college.

I spent seven years of my life actively wanting to die.

I am not exaggerating.

Imagine this for me. Imagine that you wake up. You cut yourself. You refuse breakfast. You go to class. Everything hurts. It hurts to not cry for the hour that you’re in class until you can escape somewhere and curl up in the fetal position and wrack with sobs. You refuse lunch. You try to make your body work out even though it hurts, it all hurts, it hurts all the time. You cry like other people don’t, like it feels as if your throat is trying to pull itself out of your body. You get shooting pains down your arm. You wonder when it will happen, when your heart will give out, when the razor will go too deep. You hope it’s soon. You don’t know if you can make it another day. Just staying awake feels like the most gargantuan task in the world. EVERY. SECOND. Every second feels like the worst emotional pain you’ve ever felt, and it’s a constant desperation to just end it.

Not imagine that because you’re in college and passing your classes everyone thinks your quality of life is perfectly fine. You can speak. You can bathe yourself. You can clothe yourself. You’ve hit the milestones. You’re doing everything you’re supposed to do! You’re the autistic all those autism moms think about when they wish and dream.

Except that being alive is the worst thing that you can imagine. You try not to rip your skin off. You try not to stick your fingers down your throat every night. And this goes on for months and months and years, until you’re so exhausted that you don’t know how to go on. But you do because you’re stubborn and you know that the rule is you don’t quit things that you’ve said you’re going to do, so you keep getting up and doing it again even though more than anything you want to die, you want to be done, you want your head to be quiet and calm and easy and you know it will never be.

I can’t say for certain that the reason my life was hell was because I was trying to have more than quality of life, but that sure as hell is my hunch.

When you say that quality of life is supposed to be enough but it’s not you’re telling me that you would rather have the kid who can go to college even if they want to die than the kid who will need intensive supports but may be happy as a clam. And that’s fucked up. I’s so fucked up. Quality of life doesn’t come from all those damn boxes you want. Do you want a child who’s autistic and not a fucking lawyer or doctor or do you want a kid who’s fucking dead? Because that was the road I was going down until I got adequate help.

Trying to force your kid into the mold of neurotypicality is pushing them into depression and suicidality and all of the shit you should never ever want for your kid. And yes, those milestones that are so important to you? Those are asking for neurotypicality. It’s asking your kid not to be who they are.

JUST STOP. I don’t fucking care if you’re trying to be real or open or whatever fucking shit it is that convinces parents of autistic kids to have these conversations, stop saying that you wish someone would come and fix your kid because I can hear you and I know that what you want is for me not to be myself. It tells me I’m not safe around you, that I have to keep masking, that I can’t rest.

If you have to say and think those dark, hard thoughts, don’t do them on the internet where your child might one day hear them or where people just like your child will hear them. How DARE you say that you wish he could have more than quality of life?

I would trade every accomplishment I have ever had to have had any kind of quality of life for the years that I was masking. I would give up my college degree and my voice and my job if I knew that I wouldn’t ever feel that way again.

And I’m here bawling because I saw another video of another mom who wants her kid to be fixed and all I know is that even the people who compliment me in public, people I know, people who have spoken to me about how talented and accomplished I am, they don’t want me to be who I am. They don’t want to see when I meltdown and go nonverbal, they don’t want to see the scars, they don’t want to know that getting here almost killed me and it’s people like them who did it to me. They want me to keep pretending, and they want their kid to pretend too.

That isn’t any kind of support.

Coming Out Disabled Part 2

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Welcome to part 2 of the Coming Out Disabled series! In part 1 we talked about who you might want to come out to, the pros and cons of coming out, and why you’d decide to do it. Here in part 2 we’re going to get practical: what should you actually say to someone when you come out as disabled? What are some scripts? And how do you manage when it doesn’t go the way you planned?

Formal Disclosures

Let’s start with the relatively simple; formally disclosing. This is disclosing at work, school, or another environment where you are legally protected and want to ask for accommodations.

“Employers are compelled under the ADA to make reasonable accommodations for qualified individuals with disabilities. An accommodation is a modification or adjustment that allows the individual to participate in the interviewing process or to perform the essential functions of his or her job. Examples of reasonable accommodations include providing written instructions, allowing the use of headphones to block office noise, a modified training program, flexible scheduling, etc.”-from Workplace Disclosure

In these circumstances it’s best to stay short and to the point. As we mentioned in the last post you may want to preemptively disclose if you feel that the environment is right. In that case you might say something like “I have autism. In particular I struggle with executive function, verbal instructions, and task prioritization. I don’t need accommodations right now, but I may in the future and would like it on record.”

More common however, is that you need an accommodation and you’re asking for something specific. In those cases it can be very beneficial to plan your actions ahead of time. Brainstorm (alone, with a therapist, with a trusted friend or family member) what accommodation may help you the most. Take the time to decide who you will disclose to: do you have an HR department? Do you feel comfortable disclosing to your direct supervisor? Is your direct supervisor the one who is causing problems, so you need to go to their supervisor?

Choose the person who is a. most effective at getting you the accommodation and b. that you feel comfortable speaking with. You can disclose in person or through email, whatever feels the most comfortable to you. Eventually you will probably want to get any formal accommodations in writing.

The script will probably go something like this “I have autism and because of that I have some difficulty with sensory processing. That means that the noise in the office is incredibly distracting and sometimes painful to me. I’d like to bring noise cancelling headphones as an accommodation.” You may want to provide some kind of brief information about the concern you’re bringing up to help educate your supervisor/teacher/etc.

Remember that accommodations have to be reasonable, so there is the possibility that you may not receive every accommodation you ask for, or your employer/school may suggest an alternative. However if you feel they’re ignoring the ADA you do have options, which we’ll address in part 3.

Personal Disclosures

There is no single script for disclosing to family, friends, and other close people. That’s because when you come out to your family and friends, you’re not just telling them one piece of information. You’re educating them about your entire diagnosis.

Coming out to your family is likely to be a much longer process of education and renegotiation about what you’re capable of and what supports you need. This is where the metaphor of “coming out” is particularly apt: within the queer community, people talk about the fact that you’re never done coming out. You have to keep deciding with each new person how much information to share.

That is also true with disabilities, but there’s an added layer for disabilities: for each new difficulty, need, and support you have to decide how much you want to share. For example you might tell your parents that you’re autistic, and explain that this is why you have struggled with friendships, with an intense fascination for rules, with falling too deeply into certain interests. They accept it.

A couple months later you realize that one of your struggles is with plans that change unexpectedly. Do you tell your parents and ask them to give you advance notice when things might change? What about a couple months later when you realize talking on the phone gives you anxiety and you’d prefer they text?

We’re told that having these kinds of preferences is picky and demanding, so it can become harder and harder to be open and honest the more accommodations you have to ask for. Part of coming out is the self care and self awareness to remind yourself that even if other people don’t accept your requests, they are still valid. You can set boundaries, and you deserve to have those boundaries respected.

My friend Jillian summed it up nicely:

“People are often afraid to disclose cause people might judge them, but I try to remember that the people that would judge me for disclosing are going to be the same ones that will judge me if I don’t disclose and happen to be autistic in a situation. Those aren’t the people I want in my life, or the places I want to be.”

Ok But Really What Do I Say?

Alright, fine, I’ll give you some scripts. To start out with, it can be nice to disclose to someone close to you when you’re not asking for anything. You might say something like:

“Hey mom/dad/friend/partner: I wanted to let you know something pretty important. I recently received an autism diagnosis/am autistic. There’s a whole lot of information about autism out there, but I want to give you an idea of what it means for me.

My biggest concerns are (fill in: sensory issues, executive dysfunction, eye contact etc. with a brief explanation of any technical terms and one or two concrete examples). If you’re interested, I can definitely tell you more about it, or give you some examples of how it affects my relationship with you. It might mean that I’ll ask to do things a little bit differently in the future and it would mean a lot if you can be supportive.”

They may have questions. Feel free to share as much or as little as you feel comfortable, and where you don’t feel comfortable just say “That’s a little personal. I might share it later, but right now let’s talk about (fill in other subject they seem curious about)”. They may disbelieve you or question the diagnosis. You don’t have to prove the validity of your diagnosis. Just stick to the story. “I am autistic. I don’t care if you believe it or not but I need you to respect that identity and respect my needs.”

Once you’ve established the diagnosis you may want to ask for specific accommodations. That can be pretty similar to a formal disclosure: “Hey mom: talking on the phone makes me incredibly anxious because of my autism. Can you text instead?” If you’re running in to pushback on these types of things, there are some amazing resources on setting boundaries out there. You deserve to have your diagnosis taken seriously and respected, and that should be a boundary that you set with those closest to you. You also deserve to have your accommodations respected, and you get to set the boundary that if those accommodations aren’t met (or at least if folks aren’t attempting to meet them) you will no longer be around them.

This is where disclosure gets hard. Because you may have to repeat yourself. A lot of times. Your family and friends may think they “get” it, but still forget, or still not fully believe it, or still question it somewhere in their brain. Disclosure is repetition. “No, I still cannot cook because the executive function of it makes me anxious. Yes, I know it’s been 5 years since I’ve had an eating disorder, this isn’t about that.”

Disclosure is also specificity. It’s about helping the person you love to understand presume competence, believe disclosure. What does that mean? It means explaining that while I can’t cook that meal, I’m perfectly capable of baking a cake from scratch because those are totally different. It’s explaining splinter skills: yes, I can do advanced calculus but no I can’t balance my budget. It’s constantly reiterating which places you need help and what that help looks like, while reminding that you’re not fragile, weak, or incompetent.

At its heart, disclosing to family and friends is agreeing to educate them, and educate them thoroughly on what your disability is and means to you. And that is your peek into the next installment in this series, which is other considerations when it comes to disclosing.

Coming Out Disabled Part 1

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Content note: in this post I am going to refer to the process of telling someone about your disability as “coming out”. I recognize that this language refers to the LGBT community and here I am using it metaphorically to point at a similar experience to increase understanding. I also recognize that there are problems with referring to all experiences of opening up about your identity as “coming out”, however the common understanding of the language means it’s a very useful move. I’m 100% open to criticisms and would love to hear your thoughts.

This will be a multi part post due to the many factors and ways of “coming out”.

A couple of years ago, I sent my mother an email. We weren’t at a great place at the time, so it was short and sweet: “I wanted to let you know that I’ve been diagnosed with autism. I’m not sure exactly what that means, but I thought it was important for you to know. If you have any questions I’m happy to answer them.”

This is not how you should tell your family important information about yourself.

When you receive a diagnosis like autism, or another disability it’s hard to know when to tell people, how much to tell them, what words you should use. Do they even need to know at all? This is your comprehensive guide to coming out disabled.

In this first post, we’re going to talk about who and when to tell, and talk about some of the pros and cons of coming out.

Who Should I Tell and When Should I Tell Them?

For the most part this is going to be a guide to disclosing an invisible disability because when you are visibly disabled you don’t get to choose when to have these conversations. However you can use these same kinds of guidelines to decide how much to disclose and when to have conversations about accommodations.

There are a few different types of people you may want to disclose to: friends, family, coworkers, acquaintances, teachers, landlords, and romantic partners (who could fit into some of these other categories but if you’re dating you might want to consider some specific things).

The one group of people I suggest you disclose to immediately are your medical professionals because they need to know what’s up with you.

Your Goals

When it comes to everyone else here’s what I would consider: what do you hope to get by disclosing? If you’re looking at a work, housing, or school setting, disclosure typically happens when you’re looking for accommodations. If you’re really struggling and need help, I would push more strongly to disclose. For family, friends, and acquaintances, one motivation to disclose is often to ask for additional help and support, but sometimes it’s also simply because you want validation and understanding, or because you want others to understand why you behave the way you do.

You may also want to “come out” for reasons similar to LGBT folks: it’s an important part of your identity and you don’t want to feel like you’re hiding or unable to talk about the things that affect your life and those around you.

Finally, it is possible that you want to increase awareness by disclosing. This is a pretty different goal from the others, and if that’s your goal, then it seems that there are fewer barriers to you disclosing as you’re willing to put in the time and effort to educate and fight stigma. We’ll get into that a bit in the next post.

Reaching Goals

Once you have identified what you hope to get by disclosing it’s important to consider whether you think disclosing will actually allow you to reach those goals.

Let’s start with work, housing, and school. Has the institution demonstrated that they’re willing to make accommodations? Is there a policy in place? Do you often hear supervisors or professors making ableist comments, or do they show some understanding of disability? These are the kinds of questions to ask yourself. The less that an institution has demonstrated that they’re willing to make accommodations, the more likely you will have to put in a lot of time and energy to reach the goals you had in disclosing. You may still wish to disclose, but you’ll want to plan ahead for a potential fight and gather resources first (ADA citations, potentially even a lawyer).

On the other hand, if you’ve got an institution that is vocal and open about providing accommodations, you may want to disclose your diagnosis preemptively. Especially in the workplace it can be good to let HR know ahead of time that you have a diagnosis so that if and when you ask for accommodations it’s already on file.

While disclosing at work and school can be challenging, it seems to be a fairly simple calculus to me: will I receive the accommodations I want from this? Even if the accommodations aren’t formal, it may be giving your boss a heads up so that they understand your needs as an employee.

Where things get a lot more complicated is with family, friends, romantic partners, and acquaintances. In many cases, you aren’t thinking in the same “I want to achieve this goal” way, but you wouldn’t be disclosing if you didn’t think it would improve things in some way. So think a bit about what reaction you would like from the person you’re disclosing to. Do you simply want them to know more about you? Do you want them to be a support person, and if so do you have ideas or examples of how they could help? Would you like them to be someone you can vent to? Or do you want them to be more understanding of behavior that is motivated or caused by your disability?

You can then evaluate how likely it is that you’ll be able to reach each of those goals. In some cases you might know that a friend is unlikely to be sympathetic. They may have a pattern of dismissing disabilities, or maybe they’ve been very unsympathetic when you’ve asked them to change behavior in your past. You can use these kinds of questions to determine if disclosing is likely to improve your relationship with someone or hurt it. I tend to think that if you’re close enough to someone that your disability is going to affect your relationship with them, it’s good manners to let them know about it. If you feel comfortable before that, or if you have a good gut feeling about someone, go for it! Some people think there’s such a thing as disclosing too early but I’m not one of them.

On that note, let’s talk about dating.

Romantic Relationships

Most people agree that if you want to date someone in a serious fashion there is a point at which you should disclose if you’re disabled. We’ll get into the how next week, but for now let’s talk when. Honestly there is no formula. I disclosed to all potential partners before we even went on a date, but it’s true that this might scare some people away (I personally think if they can’t handle me word vomiting about my depression I don’t want to date them). However most people think somewhere between date 3 and getting exclusive/serious. Your mileage may vary.

I would suggest that if you’re at a point where you’re calling each other “boyfriend” or “girlfriend” or a similar word, and they don’t know about something that affects most parts of your life, you may have waited too long. What’s good is that this is something you can always fix! You can disclose any time! Even if it means having a conversation about why you didn’t come out earlier, it’s better than keeping it hidden forever.

Why Wouldn’t I Want to Disclose?

So why am I writing this post if all these rules are so clear (ha)? Well because there are many things that can influence people NOT to come out. If you feel an impulse not to disclose because you feel uncomfortable, that is entirely valid, and no one has a responsibility to come out. However it can be helpful to consider what is actually motivating that discomfort and whether it’s reasonable or not.

Here are a few reasons that people choose not to disclose:

You are concerned that the person you disclose to will judge you, treat you differently, or misunderstand the diagnosis. This feels really awful, especially if they invalidate it, say it’s fake or you don’t have it, or belittle you in any other way. It is possible that this can happen and if you suspect someone might do this to you if you disclose PROTECT YOURSELF. No one deserves that shit.

However it’s also possible that you’re concerned that disclosure will be a long and difficult process. This is honestly true more often than not. When you come out, it’s not enough to just say “I’m autistic”. More often than not it means educating someone about what the diagnosis is, what it means for you, how they can help, and opening a channel for communication going forward. It’s something you keep doing over time, and can end up being a lot of work. It’s 100% valid if you don’t feel you have the spoons to educate someone at any given time, however I will say that some work on the upfront can save spoons in the future, so if you have a hunch that someone just needs to learn in order to be more helpful/understanding/supportive, it might be a good idea to brainstorm when you’ll have the energy to disclose and talk to them.

It’s surprising how often people are more willing to be understanding when they understand why you’re doing something.

Finally, some people are just private. That’s ok. You don’t have to share personal information about yourself unless you want to. However I would encourage you to remember that sharing the information can be very helpful and also decrease stigma.

Why Would I Want to Disclose?

With all that it seems like there might not be reasons to disclose. We have discussed some already, like gaining accommodations and support, but there are two that I want to focus on here.

First, every time you come out, you make it easier for the next person. Every time you educate, you increase the likelihood that another person with your diagnosis will be met with empathy and understanding rather than judgment. You aren’t required to take on this work, but it’s good, fulfilling, important work if you choose to do it.

Additionally, it can be incredibly important to disclose because it makes your life easier. Sometimes it’s not right away, and sometimes it’s not even about getting more support. Sometimes it’s as simple as being able to say out loud “I’m autistic” with ease and comfort. It’s about being yourself and cutting down on the amount of time that you have to mask and hide. Forcing yourself to act in unnatural ways takes a major toll on anyone. Being open about what you’re going through and who you are, behaving in the ways that are natural to you, and feeling comfortable to let down your guard does wonders for mood and ability to take on bigger challenges.

Coming out gives you space to relax. When people are supportive of your coming out, it’s incredibly validating. The gay community has talked before about how damaging it is to someone’s identity to live in the closet. Hiding your identity hurts no matter what kind of identity it is, and all of us deserve to be seen and recognized for ourselves.

Finally, and in my opinion best, is the fact that coming out can help you find other people who are like you. By talking about my diagnosis I have made some of the best friends in my life, people who understand and who are also autistic. It takes vulnerability, but claiming the label helps you find your people.

Look forward to some scripts and ideas for how to actually come out in part 2!

I Am Lucky To Be Autistic. You Shouldn’t Have To Be.

Standard

Three years ago I knew almost nothing about autism. I didn’t know what sensory sensitivities were, what a meltdown was, or why a weighted blanket might be someone’s lifeline. I had been diagnosed with depression, anxiety, anorexia, and subclinical borderline personality disorder. I had been in therapy for almost seven years, including two intensive programs, multiple groups, individual therapy, and family therapy.

Three years ago I would have laughed if you told me I was autistic. No therapist had ever suggested the diagnosis to me. I’m highly emotional, not analytical. I’m overly sensitive, not someone with flat affect. I’m highly successful in school, I don’t struggle at all.

Here I am three years later with an autism diagnosis that makes sense of my life in a way that no prior diagnosis ever has. And I have to be honest; it was luck and privilege that got me this diagnosis. Not only that, it was luck and privilege combined with my own determination, curiosity, and NEED to understand myself that got me the diagnosis.

That is entirely unacceptable.

Why are autistic women slipping through the cracks? Why are verbal autistics getting missed? Why are “high functioning” individuals going untreated, even when they’re suicidal or showing oodles of other symptoms?

Let’s chat about the brokenness of autism diagnoses.

When it comes to mental health care I am lucky. I have been insured my whole life, I have had access to therapy, and I have had support from my family in getting therapy. So how is it that someone who has been interacting with the mental health system for years and who is definitely autistic never received a diagnosis?

There are many, many reasons that I did not receive a diagnosis until I began to work at an autism organization, recognized the traits in myself, and sought out a diagnosis. The first is that I am a woman. Women are chronically underdiagnosed with autism, in large part because most of the research of autism happens with men and boys. The second is that I am highly verbal…most of the time. If you’ve seen me during a meltdown you understand that my verbal abilities rest entirely on my emotional state. People assume that autistics are either incapable of speech, only speak in echolalia, or have very limited speech. The third is that I was being seen in an eating disorder clinic for most of my therapy. There are certain diagnoses that are seen a classic overlaps with autism (ADHD, anxiety, etc.). There are some that are seen as diametrically opposed: eating disorder, BPD, or other diagnoses that are woman dominated.

These are all horrible misconceptions, and they’re all misconceptions that I have heard from therapists and providers. I have had to teach my therapists what autism looks like. That is a huge fucking problem, and autistics (as well as specialists who have a better understanding of the spectrum) have a LOT of educating to do.

I’ve heard psychologists say that if someone can make eye contact then they can’t be autistic.

I’ve heard people say that you grow out of autism.

I’ve searched for a place to receive adult diagnosis and found only one or two instead of the dozens that diagnose children. This means that the wait time at most of these locations was 6+ months for a diagnostic assessment.

There is so much stigma and misunderstanding that leaves autistic adults struggling to receive services. What’s particularly awful about this is that if you are an undiagnosed autistic with no supports in place, trying to battle with healthcare providers is nearly impossible. Researching, self-advocating, creating appointments, following up on appointments months later…this is a gauntlet of executive functioning that would challenge anyone. It is entirely inappropriate that an entire population of people are expected to fight their own neurology as well as mental health providers in order to receive services.

I know that many providers out there are struggling to help their clients and to obtain services for their clients, but there is so much stigma and misinformation that continues to leave vulnerable folks in the lurch.

What happens when someone gets missed during school? What happens when the mental health system doesn’t recognize autism and keeps misdiagnosing? HOW MANY AUTISTIC PEOPLE have to go through two or three or four or seven misdiagnoses before finding the one that helps?

Why is so my research focused exclusively on boys? Why do so few clinicians who aren’t specifically trained in autism have any understanding of the breadth of the spectrum? Why aren’t more women and girls and nonbinary individuals encouraged to seek treatment? Why haven’t we researched the fact that there is a much higher than average trans population in the autistic community?

I don’t have easy solutions. It takes money and resources to better educate our service providers, to create more clinicians who can diagnose and who specialize in autism, teachers who recognize autism in a variety of presentations, parents who encourage neurodiversity.

But what I do know is that no one should have to be lucky to find the diagnosis that will change their life. We can do better. The diagnostic system is broken if nearly every autistic woman has to go through multiple diagnoses before getting the right one. And we need to fix it.