Fuck You For Wishing You Could Fix Your Child


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 3


I promise that some day I will write something shorter than a 3 part series, but today is not that day. Instead, today I am going to finish out my series on coming out disabled, with some final bits and pieces you may want to consider when coming out.

The first of these is that when you come out you are in some ways taking on the task of educating people. Note that I don’t say you have the responsibility or you’re agreeing to. You shouldn’t HAVE to. BUt unfortunately if you want people to understand what you’re saying and respect your accommodations, it’s highly likely that you’ll end up doing a lot of education.

So one thing you want to consider when you’re going to bring your family and friends along into the world of disability with you is how much you trust them to educate themselves, how much energy you have to educate them, and what all they need to know. In some cases this can actually be a really cool process; if your loved one is interested, open, and curious, they’ll probably do some research themselves, but ask you about your experiences. Being able to talk openly about your disability can feel relieving and validating. Even though it does take spoons and time to explain stuff, it can also feel like growing closer.

On the other hand, if your loved one isn’t super invested in the process it can be total shit. It’s exhausting when you’re always the one who has to bring up your needs, and since we’re trained to feel like setting boundaries is asking for extra special treatment, you can feel needy or whiny. You’re not. It can feel like an impossible choice to decide whether you want to keep a diagnosis to yourself and try to navigate your needs alone, or disclose and spend time educating and convincing people that you deserve respect and validation. I hear you. It sucks.

What I will say is that in one of those situations you’re not ever likely to get support. In the other, it’s possible people will learn and grow along the way. If you’re uncertain about how family or friends will react, I strongly recommend talking it out with a therapist or someone else you trust, particularly someone who has experience with the people you’re not sure about.

It’s also possible that you have just received a diagnosis, and you’re learning along with your family. In my opinion, it’s great to be upfront when that’s the case, and ask for help in finding resources and services. Sometimes it can be easier to learn about the diagnosis together with your support system, if only because other people prefer to be helpful rather than be educated.

The final concern that I want to bring up here is the possibility that someone else might out you. That sucks. Never talk about someone else’s disability unless you’re certain they are open. But sometimes it happens. I once had an executive director mention that I was autistic to our entire leadership team without asking me. What do you do?

This only becomes a problem if you find out about it, but when you do you have a few options. You can decide to be open and out, answer questions, and live that outness. That’s what I decided to do, because I had no problem being out at work it just hadn’t seemed like the right time yet.

If that’s not an option, you can set a hard boundary: “Yes, I am autistic, but I would prefer not to talk about it. I’d also appreciate it if you don’t treat me any differently because of it.” This won’t necessarily stop people from wondering, or changing the way they act around you, but it might help. You may also want to mention to the person who outs you that you’d prefer they let you decide when to disclose. Honestly if it were me, I might even say that immediately after they out me, because I would prefer for those in hearing distance to understand that it was inappropriate, and it’s not something to be shared further.

Do you have any further questions about coming out about your disability? What was the hardest part for you? What did you learn?

Coming Out Disabled Part 1


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!