New Autism Magazine – Masking, Issue 1

Recently, I was in contact with the amazing Olivia Armstrong to do an interview for a new magazine, Masking. It’s all about showing autistic voices talking about issues that matter to the autistic community. This is great for everyone to read – whether you’re autistic yourself, have a family member or friend who is, or just want to be more informed. It’s well put together and well written, highly suggest a read!
Here’s my contribution, a section about gender bias in diagnosing autism:

“It took 19 years for someone to suggest that I might be on the spectrum, after years of therapy and obvious symptoms, such as meltdowns, growing up. These were labeled tantrums, and I was considered to have anger management problems. Girls are socialized differently, so if you’ve got a social disability and are being judged against criteria set up for a group of people who are trained from birth to socialize differently from you, there’s going to be a difference and people won’t pick up on it. You don’t fit their mold.”

“There’s theories out there that being autistic means I have a male brain. I don’t see how that’s possible, since I feel female and am very happy as a female. It feels kind of dismissive of my identity as a female to say that I must be male in some way to have the neurology I do.”

“For a while I was told I was possibly bipolar. This didn’t stick because I didn’t get the right sort of mood swings, but suffice to say it took a while and several bad theories before realizing that ASD fit me perfectly and explained everything.”

That’s just a small portion of the amazing autistic voices in this magazine, and I highly suggest giving it a read to support this emerging journalist! To show her you want an issue 2, show your support by voicing it on social media and liking her magazine’s twitter page (@MaskingMagazine)

issuu.com/maskingmagazine/docs/maskingmagazineissue1

 

 

If you like what you’ve read, show your support with likes, comments, and shares. If you like it so much you want more, follow me here on wordpress, on facebook at Some Girl with a Braid, and/or Twitter @AmalenaCaldwell.

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Toilet Talk

Let me just put this out there: don’t detail your disabled child’s bathroom struggles online or in print. Or anywhere. Unless you have their explicit, informed consent, don’t even think about publicizing it.

Warning about the tone for this post; I’m pretty angry. I wanted to finally sit down and write about what it’s like to travel to a foreign country as an autistic (no idea when I’m going to be in the mood to write that at this point), but there’s a new terrible hashtag full of ‘Autism Moms’ (and probably a few dads, but it really is majority moms) spouting nonsense, harmful debunked conspiracy theories about vaccines, insulting autistic adults, and detailing how they never wanted to take care of a disabled child. So I’d like to address just one aspect of this, one that is far too common even beyond the anti-vax crazies. Here it goes.

When an older child wets themselves in public, they don’t want the whole world to know. Yet, there’s a certain brand of ‘Autism Moms’ out there who feel it’s a badge of martyrdom pride that they cleaned their child’s waste.

Autism Marytr mom
Image is of a medal labeled “Official Autism Martyr Mom”

Recently, one such mother attacked me because she believed that I don’t know anything about autism and specifically severe autism because I’ve never had to deal with an eight year son old pissing himself in public like she has.

Sure, I haven’t. I haven’t had a kid. I’ve helped with some children of others who have had this issue, but I haven’t raised them – and I will not name or indicate their identity because I value their dignity and agency.

At the same time, this woman has never been autistic in any way. Just because I’m not a parent doesn’t mean anyone gets to dismiss everything about my knowledge just because I don’t want to disclose when the last time I wet the bed was. That I don’t tell the world details about what my parents may or may not have had to clean up at what points in my life. For my reaction to this sort of silencing technique (You’re nothing like my child! You’re too high functioning! You can talk, so you’re not really autistic! This is my domain, RAWR!), see my post A Letter to Autism Parents from an Autistic Adult.

Serpent_Emerald
Image is of a sea serpent rising from the ocean saying “How dare you speak out about autism! I am the only one able to speak about it! If you can talk, you’re not really autistic!”

I also have a question for you. Why would you ever tell anyone about such a private moment in your child’s life?! You think anyone wants to stand there soaked in their own waste due to fear or inability to control themselves and have the whole world know? Who benefits from the world knowing about this private, scary, humiliating moment? Certainly not your child. You, Autism Mom. You get pity points. Which, I fear, is all you want from your child anymore, because too many of you have written off your children as forever doomed, damaged, and practically dead – leading to irreparable damage to the children you’re supposed to treat with love.

I was in a class once where I was one of the better students. The teacher asked me to lead the beginning of class, because she needed to help another student. I didn’t know what the other student needed help for, but since the class was a subject I was confident about and I was friends with the other students (small class), I was okay with taking over and helping. I realized later as the teacher quietly helped and cleaned the floor that one of the children [neurotypical, to my knowledge – if that matters at all] who most would consider too old for such a thing had had an accident. And it was private. No one else realized what had happened. The teacher handled it right.

download.jpg
Image is of an A+ graded school paper

Parents, here’s what you do if your child struggles with bathroom issues:

  1. Clean it up
  2. Get new sheets/clothes
  3. Wash your child
  4. Put your child in new clothes
  5. DON’T TELL EVERYONE

Seriously, don’t. Us older autistics generally don’t want everyone to know when we stopped wearing diapers. And if you ask, I sure as hell wouldn’t tell you if I waltzed out of the womb fully potty trained or if I wet the bed yesterday because it is no one’s business but my own. You are violating your child’s right to privacy and agency by telling the world about these things. And it’ll follow them.

“It won’t matter!” you might say. “My child is non-verbal and will never be capable of anything! The world needs to know my struggle!”

Bathroom-Stall-Dimensions1
Image is of a row of toilet stalls

Sure, maybe your child is non-verbal, incapable of independent function, and difficult to understand/manage now. But you know something? I’ve been reading plenty of writing from autistic adults who were there. They were non-verbal for years. Some still are. Some were institutionalized. Some probably were in diapers. They were told (or more likely, their parents were told) they would never be able to live independent lives.

And where are they now? Well, some of them ARE living independent lives, or more independent lives, decades later. They can learn, adapt, figure out how to navigate a very hostile world. (Please note that I am not attempting to speak for these people, out their individual struggles, or single anyone out. If any autistics who’ve experienced these things wish to comment their stories or link to their own articles/blogs/videos about their experiences, I more than welcome it. I want your voices heard.)

Back to Autism Parents: If your child finally manages to get themselves a job interview, and their potential employer does a search on them, the last thing your child will want their potential employer to find as a search result is a book by their mother with chapters dedicated to excruciating details describing what it was like to clean their waste when they were teens. “Was afraid of hand dryers at age eight and pissed themselves in public” makes a bad thing to have in mind when reviewing someone’s resume.

Or what about if they try dating at age forty? Their potential date googles them and the first thing they find is “My child constantly wet themselves until they were thirty! God, I just hated having to clean up their feces that specific very embarrassing moment when they were eleven and didn’t make it to the bathroom! Their crying was so annoying, this wasn’t what I wanted in a child! Here are all the details on that!”

Do you think that makes for good dinner conversation?

bad date.jpg
Image is a stock photo of a woman in red sitting alone after a bad date

This extends to all other personal information that Autism Moms like to share about their children without their children’s knowledge or informed consent:

  1. Bathroom struggles
  2. Porn viewing habits
  3. Text messages
  4. Grooming struggles
  5. Executive functioning struggles
  6. Videoing/describing meltdowns in detail
  7. Anything personal and private about their children

Autism Parents, just stop this. You should love and care for your child enough that you don’t want to humiliate them. You sharing all this private information is not helpful, it harms autistics. It violates us.

Look, no one thinks it’s fun to clean up someone else’s mess. And it’s probably not what you thought you were signing up for when you had a kid, and you want to vent. Vent privately, not online for the whole world to see. Remember that this is the child you have, and you should love their autistic selves. Remember that your child is just as human as you, and treat them with dignity. If you think it’s a trial for you, just imagine for a moment what it’s like to experience what your child is experiencing for yourself. If you had a sudden case of food poisoning and made a mess all over your chair and the carpet at dinner, how would you feel if your mother took a picture of it and told all 500 of her Facebook or Twitter followers about what a burden it is to put up with a daughter/son like you?

Practice a little empathy. You’re supposed to be the ones who are good at that, right? Sharing this nonsense harms everyone:

idiot-meme-e1521872819253.png
Image is a screenshot of a meme stating “I can’t wait for my 8 year old’s diapers to be delivered,” said no mother of a vaccine injured child, ever.

 

“I’m so happy my mother decided to share private, humiliating details of my most vulnerable moments because she wants to use my struggles to point the blame of my existence at anything other than her own genetics!” – said no child ever.

We are not ‘vaccine injured’. We are not ‘stolen children’. We are not ‘practically dead shells’, and we are not ‘missing’. We are the result of your genetics. We are your children. We are adults. We are part of this society. And we deserve basic human dignity. You owe your child respect.

 

If you like what you’ve read, show your support with likes, comments, and shares. If you like it so much you want more, follow me here on wordpress, on facebook at Some Girl with a Braid, and/or Twitter @AmalenaCaldwell.

Autistic Moments: Aversions and Sensitivities

I recently read an article about a mom physically tackling and fighting her autistic child to force them to confront one of their sensitivities/aversions. She calls her child a burden, and laments his ‘tantrums’, apparently ignorant of what sensory overload induced meltdowns are about. I don’t want to give her credit and views by linking her, but it was an article published by the Washington Post, presented as a positive thing despite her admitting doctors consider her actions dangerous. I wanted to address a particular phrase. She describes her child’s aversions as ‘autistic phobias’. I can’t begin to express my dislike of this phrase. Aversions and sensitivities are not ‘phobias’. They can cause legitimate pain. I have a phobia of spiders. I have an aversion to seafood. I know the difference.

I’ve been wanting to do a piece about sensory sensitivity and aversions for a while now, I just wasn’t sure how to start it. Now I know.

If your kid has an aversion to a large, crowded arena sized theater, let me give you what I imagine they might be experiencing in terms you might comprehend. Picture that you’ve been dropped into the ocean. You’re kicking frantically to stay afloat at the surface, exhausting you to the point that you want to pass out, but you can’t because you need to survive. It’s so deep that you can’t see the bottom. The vastness and space are oppressive and make you feel small and vulnerable. The darkness below is an expanse in which anything can be hiding to come up and chomp your legs. There are large fish making strange noises with large teeth swimming all around you, and you don’t know if you’re their prey or not. Waves keep hitting you, salt is stinging your eyes, and the water is so cold it burns your skin. The noises around you cause literal pain with how loud and close they are and make your eardrums feel like they’re going to explode. Everything happening all at once is overloading your senses because you can’t focus on each individual problem at the same time, so it turns into a giant ball of pain. You’re terrified, you don’t know how or when this will end. All you want is to get back into a boat and feel something solid under your feet, to be surrounded by familiar people who’ll give you a blanket and a cup of hot chocolate, to be in a safe environment. Instead, you give in and shut off, resigning to your fate as a tortured, drowning victim as you sink.

Thalassphobia
Image is of a swimmer sinking into a dark ocean

Some people are professional divers or marine biologists who feel right at home and happy in this environment. They know that this particular species of fish is just curious and harmless to humans, they know how to block out the noise. They bring gear to give them protection from the elements. They have a great time with this experience. But that’s not necessarily you. In this scenario, the theater is the ocean, and you are a marine biologist. Try to understand that your kid is not. And they won’t be just because you beat them into submission – that’s just forcing them to chose between two different types of torture. Do they fight the waves, or let the fish drag them down? Forcing this choice on your child will make them suppress themselves around you in an unhealthy way that will emerge later as an adult or teen in the form of trust issues and trauma.

I don’t have this particular aversion to theaters, but I would like to talk about one I do have. I have a lot of food aversions and sensitivities. To throw extra wood on that fire, I literally taste things most people do not – my biology class in high school was talking about recessive traits, and there’s a paper with a particular very strong, very bitter, very unpleasant flavor on it that if you have a recessive trait you can taste, but most people do not. Only myself and one other person in the class could taste it. In addition to this, I also have strong aversions to certain textures and smells.

Let me make a quick comparison: If I told you I cooked up a nice batch of insects, the idea of putting that in your mouth would probably make you squirm and shake your head and make faces. Imagine those little legs prickling the inside of your cheek, that insect goo gushing out of its abdomen when you bite down, coating and sticking to your tongue. Little pieces of exoskeleton stuck against the roof of your mouth. It’s horrific – as in, literally a trope used in horror movies. That same aversion is what I feel towards textures of things like mushrooms and the smell of things like seafood. Just because some cultures see insects as perfectly delicious, legitimate food doesn’t mean you do. Just because you see mushrooms and seafood as perfectly delicious, legitimate food doesn’t mean I do.

bowl of roaches
Image is a bowl of roaches. You are likely lying if this doesn’t make you squirm at least a little internally.

My mom used to hide food that I didn’t like in food I did like without telling me to try and trick me into eating it. I love mashed potatoes – so she put cauliflower in the mashed potatoes. She would not tell us what was in food unless we tried it first, leading me to just not eat a lot of food if I wasn’t fairly confident I knew what it was. She’d tell me that something in a solid color cup with a solid lid and a straw was my favorite drink (orange juice) when it was actually my least favorite drink (milk). That small mushrooms were actually ‘soft water-chestnuts’.

You know what this all amounted to? Me distrusting anyone giving me food if I don’t know exactly what it is and can’t see everything clearly. My husband even feels this instinctive distrust – for years, I was afraid if he offered me something new accompanied with the words, “Here, just try this, you’ll like it.” He could feel my distrust, and I think it hurt him a little. In short, my palate was not expanded by these actions, my distrust was. My palate expanded as an adult on my own time.

For example, I willingly tried a dish called Gobi Manchurian, which is essentially seasoned and fried cauliflower. It’s delicious. But I knew what was going into my mouth, there was no trick. I made the conscious choice to try it when I was open to the concept.

gobi manchurian.jpg
Image is of a plate of gobi manchurian

Trying to get your autistic child to try new things is not bad, don’t misunderstand me. But breaking their trust to force the issue before they’re mentally able to cope is wrong, plain and simple.

Please note that I was not diagnosed as autistic as a child, and my mom had no concept of the intensity of autistic aversions. I’m not trying to bash her here, just trying to make a point. She really is a good mom, and my aversions were not as severe as some, so it may have not been as obvious. An example of a not good mom is one who will tackle their child in public, wrestle said child for over a half hour, and drag them kicking and screaming into a non-sensory friendly theater. Physically fighting them, practically body-slamming them, and dragging them as they scream for mercy is abuse.

If you’re forcing your child into non-sensory friendly environments, or forcing them to confront aversions, think about who you’re doing this for. Are you watching the milestones of neurotypical children and measuring your child against them, wishing you could brag about meeting those same milestones? Do you find yourself hating ‘autism’ and crying about what a burden dealing with ‘autism’ is, wishing you didn’t have ‘autism’ in your life? Do you call meltdowns ‘tantrums’, dismissing the cause of meltdowns entirely because you just see it as behavior in need of correcting? Do you find yourself overjoyed when your child does something ‘normal’ or is able to ‘pass’ not because you think your child is enjoying themselves or comfortable, but because for those moments it almost feels like you don’t have to deal with ‘autism’? Do you find yourself excusing abuse with “It’s okay, s/he’s autistic”? It’s not okay. And it’s not worth it. Try to imagine what your child is actually feeling and respond kindly and with empathy to that instead of focusing on how ‘autism’ affects you. It’s. Not. About. You.

And you know something… maybe your autistic kid will never get over their aversion the way I’ve learned to eat cauliflower. Maybe it’s so strong, so painful, that they just can’t. If it’s not harming them, then don’t push it. They don’t need to eat mushrooms. They don’t need to go to a non-sensory friendly performance in a giant arena with tons of screaming children.

seafood.jpg
Image is of a variety of seafood

Something I don’t think I will ever overcome is my aversion to seafood. The smell is so abrasive that the idea of putting anything related to seafood in my mouth makes me break out into a cold sweat.

A while back, I went to this cooking event my parents had tickets for. They teach you how to make a meal, and the theme was New Orleans, so seafood was involved in some of the dishes. There was a dish that had small bits of crawfish in it. I didn’t have a lot in my bowl, but I knew it was there. All I could picture was that disgusting smell and how that smell would taste. My husband, then fiancé, was there with me, watching me try to force myself to put this food in my mouth. I literally trembled just holding the fork, tried to pretend I was a ‘normal’ adult, and ended up on the verge of tears.

My husband, Evan, said the most amazing thing. “You don’t have to eat it.”

He recognized that it was so difficult for me to mentally overcome this aversion that it was better to just not eat it, and I could eat something else later. It was like a wave of pure relief to be told I don’t have to force myself to do something I’m so opposed to. I felt understood and respected.

If your kid has aversions, give them the option to try and confront them, but don’t force it. In the long run, they’re only going to be hurt by it. Understand and respect them.

And, just for those in the back: Abuse is not excused because your child is autistic. If you wouldn’t throw your body on top of a neurotypical child and restrain/wrestle them for half an hour for something as trivial as not wanting to watch a concert you want them to watch, don’t do it to an autistic kid. Don’t force people to endure pain if there’s no danger in them not enduring it. Disability is not an excuse for abuse.

DISABILITY IS NOT AN EXCUSE FOR ABUSE.

 

If you like what you’ve read, show your support with likes, comments, and shares. If you like it so much you want more, follow me here on wordpress, on facebook at Some Girl with a Braid, and/or Twitter @AmalenaCaldwell.

 

Autistic Moments - Crawfish Dish.png

Autistic Moments – Aversions and Sensitivities (text)

Some Girl with a Braid: I can’t do it… I know there’s seafood. I can’t eat it.

Evan: You don’t have to eat it. It’s okay.

Some Girl with a Braid: I can feel her judging me. She’s watching me.

Evan: She doesn’t matter. You don’t need to eat it.

Some Girl with a Braid: I love you. Let’s get McDonalds.

Autism Parent or Autism Adjacent?

I recently was thinking about a problem I’ve seen popping up in my feed lately, voiced by autistic parents. Not autism parents, autistic parents. As in, parents who are themselves autistic. They may or may not have children who are also autistic, but it is usually assumed when they say they are autistic parents that they are neurotypical parents of autistic children. This is because the label of ‘autism parent’ has been used for a long time to describe parents of autistic children.

Off the top of my head and with my 6:00AM foggy brain, I don’t think any other group does this. My fiancé was adopted from Korea, and I don’t think his parents have ever referred to themselves as ‘Korean parents’. That would imply they are parents who are Korean, which they are not. My short-haired mom doesn’t refer to herself as a long-haired braided mom just because I have long hair in a braid. Gay parents aren’t parents of gay children, they are parents who are gay.

You might as well have a cis-gendered mother refer to herself as a male parent if she gives birth to a son, as if having a male child makes her a male parent.

mom and baby
Description: Stock photo of a woman with a baby, added text has her thinking, “Having a male baby makes me a male parent, even though I’m a cis-woman!

 

So why are the parents of autistic children called autism parents?

I’m not sure what co-opting this identity accomplishes. I think some parents just find out that their kid has something, find a community, and slip into the preset of that community in order to find support without thinking too deeply about the label. I’m not sure how it started though. I don’t even think other groups of disabled people have this problem.  When I google ‘disabled parents’, I don’t find pages about parents of disabled children – I find pages about parents who are themselves disabled. I can google ‘blind’, ‘deaf’, ‘mute’, ‘paralyzed’, and ‘multiple sclerosis’ parents and not find any immediate pages about parents of children with those various conditions. Even changing ‘disabled’ to ‘disability’ gets me the same results – talking about parents who are disabled. Yet, when I google ‘autism parents’, here is the result:

Autism Parents.PNG
Picture is a screen-shot of the google search results for ‘autism parent’ referring exclusively to parents of autistic children

Why does this continue? There are parents who are autistic trying to find resources and connect with each other, and instead they end up being swallowed or erased by websites geared towards neurotypical parents of autistic children. There are autistics like myself who want to become parents one day struggle to find resources geared towards us. Perhaps this has something to do with the mistaken assumption that autism magically disappears at the age of eighteen. I’m not sure what legally being allowed to vote for the first time has to do with my neurology, but apparently some people think it’s linked? (Sarcasm)

As I was pondering the problem of the autism parent label and how it erases and makes things difficult for autistic parents, I thought about how there really isn’t a ‘neat’ alternative term. ‘Parent of an autistic’ feels bulky to say the same way ‘person with autism’ feels bulky – though you can see my previous post about the subject of language as to why there are other problems with that term. As I was thinking, the phrase ‘autism adjacent’ popped into my mind. And thanks to a quiet love of alliteration, it got its hooks in me.

Autism Adjacent literally means you are next to autism. You yourself do not have it, but someone you care for or love does. It sounds better thanks to alliteration, it says what it means, it doesn’t erase autistic parents, and it doesn’t have the same initials as ‘Animal Planet’ or ‘Alien v Predator’. I think that’s a win all around.

So, let’s see if this can be a thing. I know I’m a small blogger in a small corner of the internet, but I think ‘Autism Adjacent’ could be the much needed alternative to let autistic parents reclaim the space that should have been theirs all along. Maybe it’s too late for real change – I worry that ‘autism parent’ is too embedded into the culture of society to be easily removed, if simply because of habit. But I think it can happen.

Agree, disagree? Leave your thoughts in the comments section.

If you like what you’ve read, like, share, comment, and/or follow to show support! You can also find me on facebook as Some Girl with a Braid, or on Twitter @AmalenaCaldwell.

Autistic Moments: Autistics Should Be Sterilized

Recently, I encountered an ‘Autism Mom’ who wrote that she thinks her son shouldn’t be allowed to reproduce. She uses these words: “I am still deeply worried about the idea that he could get someone pregnant and yet could never be a real father – which is why I will insist on having medical power of attorney, so that I will be able to make the decision about a vasectomy for him after he turns 18.” This is Judith Newman, author of ‘To Siri with Love’. (Updated)

According to a New York Times review, she advocates, in fact, for (implied non-voluntary/forced) vasectomies for all autistic men. I’m not sure if she assumes autistic women only have sex with autistic men (in case she reads this and doesn’t know, we are not a separate species incapable of reproducing with neurotypicals), or if she thinks that I too should be sterilized, but men were the ones specifically mentioned. Full disclosure, I have not read the entire book this woman has written detailing her point of view, and I do not wish to give money, publicity, and recognition to someone who seems to consider something that terrible as an option. I have read several passages, and found them disturbing enough to avoid the rest for my own mental health. However, I would like to discuss this topic of sterilization because there are a disturbing number of people out there – including those who claim to be allies of autistics – who feel that we should not be allowed to be parents.

FORCED-STERILIZATION.jpg

 

Let me just say it straight up for all the autism parents out there who think that sterilizing their children should be an option. IT. IS. NOT. YOUR. DECISION. Our bodies, our choice. Plain and simple. It is not your right to steal our potential from us.

The fact that any of you would even think it is your call disgusts me. We are allowed to have agency as individuals. And it hurts me deeply that you want to take that away from us. I’ve always wanted to be a mom one day. I’m getting married in less than two months, and if all goes well, in the next few years I’ll have a mini-me or mini-him. Whenever I’ve helped care for young children, I haven’t had any real problems. I’ve worked at summer camps before handling between three to easily a hundred kids at a time. I even just helped look after my year-and-a-half-old niece yesterday and we had a delightful time as she babbled adorable nonsense and took me on a tour of the backyard garden. There are plenty of autistic parents out there who do just fine – or even just mediocre, which isn’t a crime since there are plenty of mediocre neurotypical parents out there whose kids turn out alright. Autistic parents are hard to find online, because any googling of the words ‘autism’ or ‘autistic’ and ‘mom’, ‘dad’, or ‘parent’ automatically leads to an army of neurotypical people who’ve stolen our label to slap on themselves, but they do exist. There’s even autistics out there in the education system or helping out in daycares. In many cases, we are completely capable of being nurturing, loving, successful parents. Maybe when we’re five, ten, or fifteen we’re not at that point yet, but we can learn. Judith Newman’s son is a minor. He has the potential to perhaps become capable of parenting in the next few decades. She wants to rob him of that decision because he’s not as visibly mature in one way or another as current parents – as if people never change? The reason autistic adults are so different from autistic children is that we have learned. We’ve been often forced to adapt by society around us. And even if we haven’t, there’s always the chance that we will in the future. So just because you might look at an autistic boy having a full meltdown and think, “Oh god, he could never be a parent” doesn’t mean that in the future he won’t be fully capable of parenting well. You don’t know where the future will go, how he might adapt and evolve. You should not rob him of his choices by sterilizing him. Thinking differently and having difficulties in life does not mean we should be required to give up the human right that almost all other people on this planet have, whether you think we’re worthy of it or not.

To draw a comparison (and I apologize if I make any mistakes, since it’s not a community I’m intimately familiar with, nor a part of), a deaf person who was born deaf and has no concept of hearing thinks differently from a hearing person. A deaf person would use a visual language – sign language. They may or may not be able to speak verbally. Does this mean that we should sterilize said deaf person out of fear that they won’t be able to communicate well enough if they have a hearing child? No, that’s preposterous, inhumane, and reminiscent of horrifically immoral eugenics programs. Would we do a DNA check and sterilize a hearing person if they were prone to having deaf children out of fear that they wouldn’t be able to communicate well enough with their child? No, of course not, due to presumed competence of able people. We instead provide services. The parent should learn the language their child is most suited for.

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Translated to autism, we think differently. Not in something as straightforward as lacking the experience of one of the senses, but our brains are wired differently from neurotypicals. While most of the autistics I’ve encountered are online, I find them easier to communicate with than neurotypicals, and from all the literature on the subject, neurotypicals seem to find just as much difficulty communicating with us as compared to with each other. Speaking hypothetically and with no first-hand experience, I imagine having autistic children as an autistic would be easier for me than it would be for a neurotypical. The language is one that’s natural for me, so to speak. I don’t need to learn it. This isn’t to say that I couldn’t care for a neurotypical child. As far as we can tell at this point, my niece is a bright, social, neurotypical child – she still came running to bang on the bathroom door when I left her for a few moments with her grandmother, so I must have done something right. But to say that because I may have some difficulty different from a neurotypical parent that I shouldn’t be allowed to have the ability to reproduce is appalling. It regulates basic human rights to gatekeepers. What if such a thing were to become common practice again (as we did used to practice forced sterilization)? Why stop at autistics? Should we include all disabilities? After all, how could a blind person look after a child? As seeing people, we think about how difficult that might be for us and all the problems that could happen, but blind people are parents all the time and things turn out fine. Blind adults know how to handle their blindness, and it’s really none of our business how or if they parent so long as they’re not doing something genuinely abusive warranting a call to CPS. Likewise, in general, autistic adults know how to handle autism, and it’s none of your business how or if we parent so long as we’re not doing something genuinely abusive. So don’t you dare force us to give up our choices because you presume we’ll forever be incompetent.

babies

I’d like to mention here something that I learned a while ago that broke my heart. I’ve always imagined I’d adopt a child. Ever since I was little and learned that not everyone had parents or a family, I wanted to provide that for someone if I could. My fiancé is adopted from Korea, and we discussed having one child biologically, then trying to adopt a second, preferably from Korea. I looked up the restrictions for who can adopt from Korea, and it broke me to learn that parents with any history of mental health issues – including autism – are prohibited from adopting. I began reading on forums about adoption, and trying to find anyone writing from the perspective of an autistic trying to adopt or who had adopted not just from Korea, but from anywhere. What I encountered was an unfortunate mess of people who’d been told they shouldn’t be allowed to adopt, or people saying to autistics that (without any knowledge about our abilities as a potential parent or who we are as individuals beyond being autistic) simply because we are autistic we shouldn’t be allowed to be parents because we would be incapable of emotionally nurturing a child due to our lack of empathy. This blends misinformation and incorrect stereotypes into policy that blocks caring, giving people from helping children find families.

Not all autistics want to be parents, and that should be respected. And there’s a good chance some of us perhaps shouldn’t be. But the potential for us to make that choice needs to be there, the same as it is for neurotypical people who might not make for good parents. I think that plenty of us would make for pretty good parents, and I know that there are plenty of autistic parents already out their raising happy children. We just need to not be robbed of our potential.

One last note: If you are a non-autistic parent of an autistic child and want to write a book about it, ensure that you have several autistic adults review your book for content and language as sensitivity readers. I would suggest going on twitter if you have an account, and asking for help using the #askingautistics hashtag – a space set up specifically for neurotypicals to ask autistics questions. Chances are you can find someone willing to help you there.

Asking autistics

The mother who wrote the book inspiring this blog post clearly did some research and listened to things like youtube channels of autistic adults as part of her research, which is excellent, but that’s not enough. She pays lip service to things that mean a lot to many autistics, such as pointing towards actually autistic sources, but then undermines it all with presumed incompetence (“I want to understand what he’s thinking. *Is* he thinking?” Yes. Yes he is. And you feeling he doesn’t think will hurt him one day), infantilization, promotion of eugenics, appropriation of autistic adults without their consent or consultation, othering, demeaning language, dismissal of her own son’s agency as a person, dismissal of her son’s privacy as an individual, and overall harmful bile. An autistic sensitivity reader could have seen this and instantly told her how incredibly harmful such language is to our community – and to her son. I don’t think that parents with autistic children should never write books about their experience. I think such works can be very useful to other parents facing similar situations. However, they need to be extremely careful in doing so and ensure that they are not belittling, shouting over, harming, or presuming to speak for autistics. We are the only people who can truly speak for autistics. Keep that in mind next time you see a non-autistic writer appropriating our label, and if you read their work, read it with a grain of salt and a critical lens.

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Some Girl With a Braid at Six Years Old: When I grow up, I’m going to have a baby like my doll, and I’m going to make up a name for her like my mommy and daddy made up my name, and I’m going to love her, and take care of her, and cuddle her, and read to her, and teach her dancing…

Some Girl With a Braid at Twelve Years Old: There’s so many children without nice families like mine… I should make a family for one or two when I grow up. More people should adopt. I should try to adopt.

Some Girl With a Braid at Twenty-Four Years Old: You are the cutest little niece a girl could ask for. I hope your future cousin is even half as cute as you, you adorable little girl.

Niece: Kitty-Cat ah Goo!

Internet: Autistic people should be sterilized. Autistic men should have vasectomies. Autistics should not be allowed to adopt. Autistics should never be parents. Reproducing is a right they should not be allowed.

Some Girl With a Braid: *Sobs quietly*

(Update, 3:43 – came across an extremely disturbing passage and have decided to name names because while I don’t want to give her publicity, this needs to be shamed.)

A Letter to Autism Parents from an Autistic Adult

Dear Autism Parents,

I don’t know what it’s like to have an autistic kid. There’s a good chance I will in the future since there is definitely a genetic component to autism, but at the moment, it’s not an experience I can fully understand. I get that it’s hard – there’s things you have to cope with and learn that you never expected to have to cope with or learn when you decided to be a parent. And to the good parents, guardians, and family out there, you are absolutely invaluable. Really, I mean it. I realized as I was writing my last post about Disney that the reason I don’t have as many sensory issues as I might have otherwise is that my family, in providing good support, created a mobile sanctuary. These were my safe people. Safe people function kind of the same as a safe space. They provide comfort simply in their vicinity. They empower me and make it possible for me to do things that on my own I simply can’t. Their words and attitude towards me are vital in providing that support. I got messages like, “You are capable of so many great things”, “I know you can do this”, and “it’s okay to be yourself” throughout my childhood. And if I couldn’t do something, then “that’s okay, do you want to try again?” along with “Without failure, you’d never have success,” helped to pick me up and encourage me. These are good things to hear, said to me by a truly awesome ‘autism mom’ who never even labeled herself as such (I think the label is slightly problematic, but that’s a topic for a different post: suffice to say, if parents have a kid who’s deaf, they don’t call themselves ‘deaf parents’ because they themselves are not deaf). She was just my mom, and that was what I needed.

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Bad things for a kid to hear are unfortunately posted in almost every single ‘autism community’ comment section I’ve ever seen by the very parents we depend on. There are tons of comments about how autism ruins lives and destroys families, or that it’s simply such an awful thing to exist. Some parents do reprehensible things like recording their child during a meltdown without permission – an extremely vulnerable, sometimes terrifying episode that is emotionally tumultuous – and publishing it for the world to see. They talk about cleaning up a teenager’s fecal matter, as if it’s okay to discuss the very private bathroom difficulties of someone else who’s already dependent and vulnerable. There was even once a video made of an autism mom talking right in front of her kid about how she fantasized about killing herself and her autistic daughter, and only didn’t because she had one “normal” child. And they constantly insult, block, and put down adult autistics.

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This is part of an argument that occurred commenting on a video of an autistic explaining why she prefers to be called ‘autistic’ rather than ‘person with autism’. The mother in question felt that this was wrong, and her son should never be labeled – then proceeded to label him male, funny, spontaneous, intelligent, and interesting without seeing the irony.

There’s a rift between autism and autistic communities. One is made up mostly by people who know autistics, the other is made up by autistics themselves. The first seems to think that the latter standing up for themselves is some sort of crime. (Generally speaking – there are those out there who stand up for autistics, but they’re unfortunately not as loud.) For something as simple as saying that I think that those of us on the spectrum should be able to decide for ourselves how we’re referred to (autistic vs person with autism), I was told by a self-proclaimed mother of an autistic boy to “kindly fuck off and shove your judgement up your arse!” This was followed up with, “I couldn’t care less what you think… I don’t care what you have to say.” This isn’t even unusual. Everywhere there’s autism parents online, there’s a good amount who say and think exactly that. They treat autistic adults like we’re monsters out to get them, when we just want to say how it is to actually be autistic in hopes of autism parents doing well by their autistic children. When autism parents internalize the idea that autistic adults are bad, the message they’ll end up sending their autistic kids is that they’re bad. If a mom complains about how autism has ruined her life, then her kid hears that their existence has ruined her mom’s life.

And contrary to some people’s opinion, a lot of us do understand. Even those who are non-verbal can still be capable of understanding. Responding is the difficult part. And in understanding, we can internalize at a young age your frustrations and anger, and feel it’s not directed at, say, wishing you had more energy to keep up with your child, but rather at the fact that your child is autistic. That there is something wrong about the way we are that makes your life worse. That our existence is a burden, and you resent us for existing.

I think that even if you never flat out say these things to your child, but you say them to your friends or to strangers online, it’s still in your mind. It’ll subconsciously reflect in your behavior at some point and harm your child. I hope none of the autism moms who insult people like me online want to harm their children. Yet… they see no problem in harming other autistics, and try to discredit us whenever we speak.

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Can you spot the difference?

 

They tell us that we, autistic adults, are nothing like their kid, so we’re wrong in everything we say. Of course I’m nothing like a four-year-old. I’m twenty-four. What neurotypical twenty-four-year-old is just like a neurotypical four-year-old, and why are neurodivergent twenty-four-year-olds expected to be just like neurodivergent four-year-olds? We’re what they grow up to be, and have plenty of insight that could help you and your child if you’re willing to listen to us rather than insult and degrade us (I’ve seen some stoop so low as to call us brain-damaged R-words for daring to disagree). We don’t stop being legitimately autistic when we’re older. Also, there’s a very good chance that your child will grow up to agree with the things that those who are autistic adults say. Children don’t stay children forever. Insulting autistic adults insults your child’s future.

If an autistic adult has advice, or says that you might not be doing something right, don’t act defensively and lash out – even if said autistic adult doesn’t word things in a perfectly tactful manner. We’re autistic: social communication isn’t necessarily our forte, and it gets frustrating trying to teach neurotypicals the same thing over and over, so we might be a little rude once in a while, but generally mean well.

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When an autistic adult shares information, use it as a resource and gather that information. We’re on your side in that we just want what’s best for the next generation of autistics. If someone who’s autistic tells you ‘Traditional ABA therapy is compliance training that is torture for us – I know, I survived it’ don’t shout at them and rave about how it works because your kid can hug you without screaming in pain now. Consider what they’re saying. Maybe your child shouldn’t be forced to hug anyone if their initial reaction is to scream in pain. For more on why compliance training and forced physical contact is harmful, see my post on sexual assault: Sexual Assault, Autism, and the Case for Comprehensive Sex Education for Autistics and the Disabled

Most importantly when interacting with autistic adults online, think about the people on the other side of the screen. For me, there’s a level of sheer anxiety when I comment on autism online, because I just know that there’s a good chance some autism mom will rise up like a sea serpent and try to drown me for daring to sail in waters she sees as her territory and no one else’s. Don’t be a sea serpent. If you can’t see us as people worthy of respect, then remember we’re some Autism Mom’s kid. Think about how you would feel if you found out that a group of people ganged up on your child and cursed them out for daring to have an opinion and be autistic at the same time.

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And think about what your child might think of you when they get older, log onto facebook one day, scroll through your old conversations, and find you telling an autistic adult that they’re not worth listening to because they’re just a brain-damaged r-word. Your child will become us. They’ll understand that you stood against us – against them. They will feel betrayed. They will understand that you care less about their struggles than you care about your pride, and that you are the cause of some of their struggles. They might even believe that you don’t genuinely care if they read that you said to an autistic adult, “I couldn’t care less what you think… I don’t care what you have to say.”

I have wonderful parents who never insult me or other autistics. They encourage me and don’t see me as a burden. Sometimes I have disagreements with them, but overall, they’re pretty awesome. Be the kind of parent that an autistic adult son or daughter can be proud of and think well of when they’re grown.

In my opinion, the only people who should rightfully get a say about autism and how it’s treated are autistics. We know what the experience is like, and those who are not autistic do not. They can’t understand it the way we do. Meaning well isn’t enough if someone is doing something harmful. Listen to what we have to say. Read what we write. Try to understand our perspectives. Don’t shut us out and silence us. Don’t hurt us. You’re only hurting your own children.

Thank you for your time.

Sincerely,

An Autistic Adult

 

Are you autistic? Have you encountered these sorts of parents online? Would you like to share your experiences and say what you would like them to know? Comment below.

Alternatively, are you an Autism Parent, or other member of the Autism Community (aka, non-autistic people involved in the lives of autistics)? Are you willing to stand up for the Autistic Community by supporting our voices and agency? Comment below.

Like, share, comment, and/or follow to show support! You can also find me on facebook as Some Girl with a Braid, or on Twitter @AmalenaCaldwell.