What’s the point of talking about autism?

Sometimes I wonder.

A simple google search for the same question, including “my”, brings up nine results devoted to non-autistic people. The second result is a TED Talk by Rosie King, who is autistic, but…the speech is ableist (a “severely autistic” brother because he “can’t talk”).

I’m not saying there is a problem with how autistics personally choose to identify. My problem lies in using specific terminology to avoid pissing off large crowds and running into “autism moms”, who are not autistic themselves but wear “autism” like it’s soccer and they’re desperately trying to cheer their kid on to make a goal when the kid is better at playing defense, but they’re having to play goalie just to ward off all the negative talk and pretend like they’re not hearing it.

Having a blog makes me more susceptible to criticism.

I’m asked whether I’ve a diagnosis, although this doesn’t matter in my community anymore because of the privilege of it—so I don’t advertise whether I do anymore. At the end of the day, all a diagnosis is expected to do is help me get social security benefits—but it’s not enough even then, because people have repeatedly voted against making the system easy for people like me. And I don’t even want the benefits. I monetize my blog specifically to avoid having to do this. My rock bottom is having to sell my used panties for a living, even though the idea grosses me TF out. I’m not there yet, but it trumps trying to get on benefits, simply because I have a family who has advocated against “handouts” and thus put in me the shame if I ever had to go on them.

My comments section brings on the worst of people, though that doesn’t mean people haven’t emailed me with worse insults simply because I’m autistic. I have turned off my comments twice before. At times, I consider doing it again, but my dilemma is that I love comments. They provide the kind of interaction that cannot be replaced with social media or email.

Family has taken posts I write about anything and made them about themselves. My post on autism stigma, for example, resulted in an aunt flat-out lying about me to one of my closest cousins. Like, I don’t know what she was trying to gain of it?? Laughable attempts include accusing me of talking smack about a grandmother I wasn’t even talking about and saying I signed up for the same college her child had signed up for…which I didn’t even know, and even if I did, they use all these acronyms I can’t keep up with. It may as well be football or basketball or whatever sport is in season right now! I saved the conversation as a reminder that anyone can hurt me, regardless of who/what/how I am.

One of the reasons I was suicidal for several years and self-harmed was because I thought my life wasn’t worth living. One of those reasons was because of autism.

To Siri With Love is a great example of how much of the world honors medical professionals and “autism parents”, while they actively work to silence the actually autistic community. When the narratives of autism martyr moms paint autistic children as burdens and the media sympathizes with the parents who killed, or thought about killing, their autistic children because of the burden, it’s really damaging to the more vulnerable autistics.

36 is the average age when autistic people die. I just had my 27th birthday, on 26th March. For most, it’s a celebratory event. For me, I don’t quite know how to feel.

Sometimes, I feel like crying. Nine years until the average death age.

Other times, I want to scream at the top of my lungs, I’M NOT DEPRESSED ABOUT IT BECAUSE OF MY TICKING CLOCK, because I decided against having biological children in my youth. Have you met my mother? And I saw those birth stories on TLC. Did you know they cut a part of the vaginal opening sometimes? NO THANK YOU. I barely get my menstrual cups in; I can’t imagine how much would have to be cut for a human head.

I want to be one of the people of my kind who makes a positive impact on the world and provokes the demand for change—autistic, someone with an eating disorder and/or depression and/or PTSD and/or Tourette Syndrome and/or allergies, an abuse victim/survivor, a neglected victim/survivor, a writer, disabled, a blogger, a redhead, a dreamer, a native, a human.

Sometimes I fear I haven’t done enough yet—like, why have I been lollygagging? The world is still ableist and gross and horrible and crude to anyone and everyone who doesn’t fit perfectly into the box of normalcy. People still pray to their higher power to take away these things that make their relatives unique and capable of doing a lot of good for other people like them in the world—not the things that literally kill their hosts with each second, like cancer or flesh-eating diseases—but things like autism and Down syndrome that aren’t parasitic.

Dimples are a genetic defect. They’re usually harmless to the individual’s body, so we don’t make a big deal of it.

1 to 2 percent of the population is redheaded, the cause being a mutated gene called MC1R. We’re twice as susceptible to Parkinson’s, which my late grandfather had. The MC1R mutations are also linked to melanoma. There’s also increased risk for endometriosis,  Despite the health risks, no one is looking for a cure to redheadedness, which is shocking because surgeons—medical professionals—hate us. But at least we’re good at making Vitamin D…that’s what counts, right? And aside from Gilbert Blythe calling Anne “Carrots”, our hair color doesn’t affect other people [so long as it’s natural].

Articles from the autistic community are what helped heal me in this department.

Does this mean my potential life expectancy is extended? I don’t know. The consequences of the cards I’ve been dealt stack up eventually. There’s a reason I’ve a great poker face. Plus, filling my blog with loads of negativity has a way of deterring new readers, and I love readers.

People like Amethyst, Amy Sequenzia, Cynthia Kim, Lydia Brown, Samantha Craft, and so many others who have come and gone—they all helped me feel like less of a burden and as though my life mattered, regardless of who/what/how I am. There’s also you, reader of my blog. You don’t realize how much a blog can to mean you at your worst when it feels like the rest of the world is telling you to go kill yourself.

Organizations and sites like Autism Speaks and Age of Autism didn’t help—not because of whether I asked them to, but because of the articles they published and promotional propaganda that made me feel like a terrorist in my own life and the lives of those around me.

Articles on Huffington Post and The Mighty didn’t help me. No—surprisingly, Ollibean and Autism Women’s Network and ASAN were the only multi-author blogs—the only mega network blogs—that made any difference in the journey to my own autism acceptance.

So…is there a point to all the madness and the criticism? Is sticking it out—through the backlash and martyrdom I get even on social media—worth it? I don’t know.

I don’t know if this blog of mine, these articles I write, the tweets I publish—do any good for the communities to which it all corresponds or the world, but I hang on to the hope that someone somewhere out there is in the same position I was several years ago. I hang on to the hope that there is at least one person in the world who will, at some point, come across everything I put out there and feel a similar impact I did all those years ago when there was no one to save me but myself, because who else cared about me?

Because even if it’s just one person, it’s totally worth it. If you’re that one person I’ve touched, you’re worth it.


I do this every time I run into some kind of pause—something that makes me feel like there is no point to this. I have moments wherein I feel like I can do anything and the world is my oyster (whatever that means)—that I have all these ideas for posts that could help make things better for the lot of us! But then I don’t have the ability to always be “on” and articulate my thoughts well. I’m just a person in a world full of billions of other people better at a lot of things than me.

A photo of myself sitting at the foot of my bed. My hair's in a half-ponytail. I'm in a blue sweater; my mouth is covered by my first.
In hindsight, I could have used a better filter that didn’t turn me yellow.

So…while I’ve talked myself out of wondering what the point is this time, there will definitely be other times. The autism community likes to put the responsibility onto the autistic community—if the neurotypical world is not satisfactory, it’s up to us to solve it. The people of any community should not have to prove their worth to humanity in order to be viewed as humans of equal worth.

This inner battle of mine…I imagine many others out there experience similar feelings, regardless of what community they originate. All I’m saying is, Think about it.

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Comments on this post

Brandi Wilkinson’s gravatar

You are beautiful, inside and out. Your blog gives me insight that I have needed. It gives me an understanding of the person I have loved forever but not been able to completely understand.

You are you and you keep doing you…continue to be the person God created you to be.

I love you! Be-Be

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Christine’s gravatar

The content you publish and the work that you’re doing to bring awareness and authenticity to your community is amazing. You talk about the ‘uncomfortable” and you rip away the layers of banners, charities, and awareness walks that most people tend to hide behind. Social Media certainly allows people to be critical, especially things they have no prior knowledge of. And why not? They’re behind a screen with memes that they claim to be fact and want to pretend like they know it all and get off on trolling other people’s posts and experiences. —ramble ramble ramble— Either way…I would love to see you doing a TED Talk one day!

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Jane’s gravatar

Ah, yes…the screen! 😅 I always forget, because I’ve been more myself behind the screen. 😣 At times, it’s where and how I failed to continue on being this person people wanted me to be. But then, I don’t understand why we can’t just be who we are off-screen on-screen…like, it seems like so much effort to be someone else. The real self comes out eventually.

Anyway, thanks for the comment! 💖 It really makes a difference in my worth-it pondering.

And I’d definitely love to do a TED Talk one day! It’s one of the things I do so hope to accomplish! Gotta work up to it first, of course. 😳

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Jamie’s gravatar

Jane,

You’ve definitely come a long ways since I’ve known you and we’ve had our fair share of differences and what not, but for the most part, you’re definitely a strong willed person and a survivor. This is coming from my heart.

Anyways, a dear friend of mine has a daughter that has a condition to where she has to get surgery on her jaw every so often or else it’ll be morphed into something to where she can’t talk or anything. I’ve had a discussion with her mom about her daughter having to go through this and also being criticized by others, which will happen. I eventually told her that I’m sure they all know about this and that eventually my niece (my friend made me her daughters honorary aunt) because I’m looking for all of them and explaining that the Internet can be so hard on those who are different because they simply don’t understand. I also said that I had went through some rough times as well and lost a few friends because I’ve done something stupid online to cause me to lose those friends and that haters are gonna hate no matter what to make themselves feel better about themselves.

I’m proud that you’ve come this far in life and haven’t given up. Did you know that there’s been times where I’ve felt like giving up completely? Like most of us bloggers,and I hate to admit this, I too have self harmed so much so that I wasn’t thinking clearly when I did. But glad, it’s in the past and I have learned from that. There are people who cares about you just like there are of my niece and myself. I forgot exactly what condition my niece has, but her life expectancy is 26 years old and is said that most people with her condition will commit suicide. Instead of being the woe is me person that most tend to be once they find out they have a condition that can’t be cured, my niece took it upon herself to learn the guitar and actually wrote songs about it. I’m proud of her for doing so. I’m also proud of you for being brave and speaking up about autism on your blog. I admire those who do something if and when they have an illness or a condition that can’t be treated and instead of letting it define them as the condition or illness, they take what’s given to them and find a way to help others learn about it. I admire that. You have that strength and have done so. I’ve been wanting to tell you this, but I feared it might back fire or something. Keep rocking!

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Georgie’s gravatar

Honestly the fact that one of your drivers is to change the world even just for one person, shit that warms my heart so much. I may not be someone you might have helped in the way you’re wanting to help, but I’m sure someone out there is. I’m sure your voice will reach someone, because to me it’s a powerful, strong voice, and you know your purpose – nothing is more indestructible than someone who knows why they are on this earth and has reason to keep standing even though every other fucking thing has told them otherwise.

And I know there is a whole population of people out there who desperately need to be educated with your experiences and knowing what you go through. If it isn’t the terrible mothers using their children, then let it be the curious, more open-minded people of the world who don’t know anything now, but will be able to learn so much from what you write, and spread your message. You aren’t the only one out there with a powerful voice like this who doesn’t succumb to ableist language in order to make people understand. There is a community of them. I hope you continue to find them in your path.

You GO. And you keep GOING. 👊🔥

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Kassy’s gravatar

Your words, thoughts, opinions matter and the fact you want to make a positive change is amazing. It’s so awful that people target those that do not fit into the same ‘box’. While my journey has been slightly different, I can relate on some levels and have found myself feeling the same way a lot of times. I have found I just have to try and do what I can, even if that is a small thing. It’s out there and has been sent with my best intentions. ❤️

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