Friday, April 14, 2017

Autistic to allistic: 10 things I want you to know this autism awareness month (and every month)




Trigger warnings: Death/murder, ableism, ABA, therapy, mild swearing, that's all I can think of, if something I talked about is triggering and I didn't list it here, please, please let me know. I will edit it in. ^_^

*Note: I use "you" a lot in a generalized way. It is targeted at the allistic reader, not my autistic pals. But I didn't have anyone in particular in mind while writing*


So April is here, and I'm taking a break from hiding under a fort of blankets to do some educatin' 


This year I've been surprised that things haven't been as bad as I thought they'd be. There hasn't been much cure talk, or genuine horrible-ness. A lot of places, for instance the London eye, planning on "lighting it up blue" have canceled their plans upon listening to us. Lindt chocolate, Panera bread, and Build-a-bear have ended their partnership with Autism Speaks and have listened to autistic people. And right now the autism awareness month and light it up blue tags are a mix of misguided parents who genuinely want to do the best but just don't know, and us, hoping to reach them and educate them. And of course, there's the anti-vaxxers and "autism doesn't have my son" people, and the "meme" people who think autism is sOO FUNNY and spend all their time dedicating their lives to going on autism tags and posting memes- we have all these people still lurking here and there, but I can't believe I'm saying this, this is our best year yet I think. I see our progress being made. I'm so beyond proud of this community, we're slow and steady, but we have passion. We are patient with this. The tortoise beats the hare. 

But regardless of the progress and the somewhat okay-ness, around this time of month is still this intoxicating scent of ableism. The puzzle pieces, the blue, the patronizing speech. Since Autism (NT's) Speaks-over us has changed their mission to "acceptance" a lot of people have changed the way they think a little too, which is the only good that's ever come out of Autism Speaks. But what most people don't know is that Autism $peaks has a different mission than most of the people who think they're changing a life by lighting up a blue tinted lightbulb or doing a jigsaw puzzle in the name of autism to represent a child being put together, or whatever.

Some people I truly believe mean well, I see it, they love their children and are truly misguided in this. They look up Autism and see this organization first on the page. They hear about it through someone. They want to do good but are unwillingly and unknowingly contributing to bad. These are the people I'm trying to reach today. I'm not here for genuine ableists, they're never going to change, they willingly ignore us and speak over us and make money off us. They don't care. And to put it lightly, screw them. 

Today's post is directed at those I know want to learn. These are those we need to educate, they are vulnerable to everything right now. And they can become some of our greatest allies if they listen. Anger is good, we need it, we need all kinds of advocates. But this month I'm educating, I'm not wasting my energy on people dedicated to ignore us.

Anyways, without further ado, 10 things I want allistic people to know this autism awareness month. 


1. It's more than a month 

To start off, autistic people exist all year, not just April. This is a silly thing to say but it kills me to see people, uneducated no less, pretend they care about autistic people in April but don't care about us every other month of the year, they want to make themselves look good this month but don't care to listen to us or educate themselves.

If you're here listening to an autistic person and actively trying to educate yourself, you're already a step above so many people. 

Autistic people need many things, and not just for April, or a specific day or month, always. Every day, every month.

We need to make everyday autism awareness, acceptance, and appreciation day. Autistic people exist outside of April, and educating yourself does too. 

Also, please do not let family or friends be your only reason to educate yourself about autism, everybody needs to, anyone you meet could be autistic, and our goal is for everyone to be a little more educated and accepting. The more understanding the better. No amount of educating yourself is ever wasted, you don't need a reason to learn. 


2. Autism Speaks doesn't speak for me. Break your lightbulbs and forget what you know.

If you got your information about autism from Autism Speaks, I'm sorry to say that you need to forget everything you know and start over. 

Autism Speaks is very good at lying, at least good enough to fool vulnerable parents into thinking they want the same things. But they're not good at hiding their past, and we autistic people and our good allies are good at finding this stuff. Also, they only changed their mission statement, like, a few months ago. They were all for cures and called your kid a burden just a few months ago. They just have the worst of it hidden. But I see all these parents with "LIUB" on their profile pics and talk about acceptance and not wanting to cure their au-some kid, and I'm like "I don't think you want the same things as Autism Speaks..." 

Now, I can't explain this all on my own, it's a very complex subject, that is- just what's wrong with Autism Speaks. But my basic answer is simple- everything. 

Forget about their just blatant awfulness for a second, let's first talk about what they actually DO. An organization, no matter how, ya know, sh*tty it is, is at least supposed to give somewhat back to their community. Nope. You guessed wrong.

Where exactly does your money go if you donate to Autism Speaks? 

44% goes to "research" this is what a lot of you want, not even in a cure way, just want answers to things. Autism Speaks will never have the kind of research you want. They study cures, even if they call that "solutions" now, even if they preach "acceptance" now, even if they post a picture of a child running on the beach with "different not less" They see me, and your child, and different AND less. 

Autism Speaks has a history with eugenics. You know what that is? Killing an otherwise healthy baby of a certain group before they can be born. That's your cure. They think people like me don't deserve to be born. 

Autism Speaks is a voice in the anti-vaccine movement, have your opinions on vaccines, I don't care, but don't let autism be the reason. Because I can think of a million diseases vaccines prevent that are worse than autism. Autism isn't a disease. 

Anyways, vaccines don't cause autism. This has been proven. The man who first made that link and did the studies was a criminal and a liar. But I'm sick of saying autism isn't caused by vaccines, I'm here to say- so what if it was? Would you rather your kid die from a deadly disease? Vaccines have kept deadly diseases of the past from coming back in the future. If you think my neurology is worse than a deadly disease, I don't have anything to say to you, I cannot see you as a human being with a working brain when you say stuff like that. There's nothing I can say that'll convince you anything if you think like that.

Autism Speaks has endorsed extremely harmful treatments such as bleach enemas and chelation. These treatments have resulted in three known deaths and multiple sicknesses. (I pause to just ponder how human beings can be so horrifyingly stupid and disgusting as to put bleach- BLEACH- in their child. The simplest thing I can say to this is- WHAT THE HELL?! But that is too simple. It's heartbreaking.)


22% goes to fundraising. If you don't know what that means it basically goes to themselves, for their own commercials and bullcrap. Their fundraising has caused panic, fear, harm, and hatred against autistic people for over 10 years. Your money will be funding the dehumanization and demonizing of me, my niece, some of my best friends, your autistic loved one, and so many other beautiful autistic people. 

21% goes to "awareness" and advertising. Same thing. Different words.

5% goes to administrative costs and salaries. Your money is going to the paychecks, dinners, and new cars of rich neurotypical people before anything goes to us.

4% goes to "other" 

And finally, 4% and possibly even littler goes directly to helping autistic people and their families. 

Autism Speaks has one of the highest paying salaries amongst autism organizations, and with all that money they can only find 4% to give directly to us, which is what they promise. 

Moving on.

Autism Speaks doesn't have a single board member on the autism spectrum. They did, John Elder Robinson, but he quit after trying desperately to change them, and upon quitting has advocated against them and has come out with horrible things they do as an organization. Autism Speaks does not listen to autistic people, they don't listen to you, they don't listen to me. They listen to the money filling up their banks. They see autistic people as objects, another species, less than human, monsters. When really, they're speaking of themselves. The horrid things they say, the horrifying, dehumanizing things they say often leave me wondering if they're truly human at all, with a soul and a beating heart; They're stone cold. 

Let's talk about some of the things they've said about autistic people.

Here's a transcript from one of their commercials, if you can stomach it: http://autisticadvocacy.org/2009/09/horrific-autism-speaks-i-am-autism-ad-transcript/

Yep.

Total lies! I live with autism and aside from him making me do all the housework for him, I can assure you he doesn't steal children. 

No, but in all seriousness- what the hell?! Horrifying. That's all I can say. I can't quite articulate anything else. 


By supporting Autism Speaks you are actively contributing to fear mongering, harm, isolation, and hatred of autistic people. So much of their research and words not just emotionally, but physically hurt autistic people. They have actively put us in danger.

That isn't the worst of their fundraising, believe it or not. In one commercial they broadcast and sympathize with a mother who wanted to kill herself and her autistic daughter but didn't because of her "normal" child. If that was a Neurotypical child that would end the mother up in jail, but disabled people apparently are not worthy of the same respect, justice, and, ya know, HUMANITY. 

There are no words.

I am a human, a neurodivergent one, but that doesn't make me less or other. I'm just as human as you. And the fact I have to say this, is just really, really sad and kind of funny. 

This is what Autism Speaks has done. They've instilled fear into vulnerable people- for what? Money? Exactly.

This is what you're contributing to when you "light it up blue" And this isn't even the half of it.

Don't come to me about the "change in mission statement" 

You can change "cure" to "solutions" (which, in my opinion, is even worse)

You can change "awareness" to "acceptance"

But you can't change years and years of pure, horrifying ableism.

You can't erase that. The damage is done.

There is no apologizing for that. 

Autism Speaks will never, ever be an acceptance group. Their idea of acceptance is "I tolerate this annoying, inconvenient thing" Their idea of acceptance is "I love my kid but not this hORRIFYING SOUL SUCKING DISEASE" Their idea of acceptance is "We love autistic people, but only when they contribute to our agenda" 

That's the acceptance Autism Speaks promotes. Is that really the acceptance you want?

A common thing I see amongst people is being all "well I support Autism Speaks AND acceptance, why are we so divided? Why can't I do both?"

If you truly accept us, the horrible things we've TOLD YOU they've done and STILL do, you would not even think twice about boycotting them. And if you still feel compelled to support them, even after knowing this, you are not for acceptance.

You cannot accept us and support the fear mongering and dehumanization of us, that's not how it works, my friend.



Autistics are speaking. It's time to listen. 

All my pieces fit fine, thank you. 



3. Listen to autistic people. 

Autistic people are your best autism experts. Autistic people are your ONLY autism experts. 

You do not truly understand or know autism unless you see the world through autistic eyes. We see the world in a unique way, a way that someone who isn't wired like us or similar to that will never get. Likewise, we know about autism more than any Neurotypical "expert" ever will. 

I get it, you search up "Autism" to learn or find resources and Autism Speaks and the likes are the first thing that come up, but if you're really legit about learning about autism and helping autistic people, you really have to do your research and check your sources, because a lot of organizations and sources are harmful to us.

Autistic people are your best resources. There is no better resource. The only exception I'd say is good, respectful parent advocates, for instance Diary of a mom is an amazing advocate, so respectful of her daughter, such an amazing mom, a brilliant writer, and a powerful ally. She's the perfect example of a good allistic resource, and a great parental advocate. 

But your first source should always be autistic people, as I said there are good resources that are run by allistic people, like Diary of a mom is good for parents, and one wonderful organization I can think of is Autism Society of America, which does so, so much good for autistic people, it helps them with independence, spreading ACCURATE and good awareness such as honestly and respectively bringing to light the struggles we face in society, and provides many services and information. They are the best org I know that isn't autistic run, but autistic people are active with them and they are safe. But your first source should always be autistic advocates.

Autistic Self Advocacy Network is THE best autistic organization. They're autistic run, for one, and they are my number one resource. When you donate to them, you're donating directly to autistic people. If they say something is OK, I trust it. Some of my favorite advocates work on their board. I just love this organization so much, they are heroes to me. They have millions of resources and information about autism, and are becoming very well known, so many companies and even producers representing autism in their work are turning to ASAN for information, because our community is slowly but steadily making so much change, and people are listening.

The world is learning that true awareness, acceptance, appreciation, and accommodation only happens when you listen to autistic people. A slogan in our community is "Nothing about us without us"

You cannot say that you want to learn about autism or that you accept autistic people if you actively ignore what we tell you and support organizations we tell you are terrible. It does not go two ways. 

If we tell you not to support something, do NOT support it.

If we tell you what is good for us, we know that it is good for us, not you. 

Listen to our voices, we know better than anyone. You do not. Allistic people do not speak for us. They can be allies, they can speak *with* us, but they can not speak for us; It is not their voice. 

If you do not listen to autistic people, you will never truly learn about autism. We are your best resources. Adult and teenage autistics are your best resources for a child autistic, as we've lived it and we can give the best, most accurate advice.



4. Yes, *good* awareness, but acceptance and neurodiversity too


So a very popular argument is acceptance versus awareness. And it's always one or the other. But I believe that we need both. And more. But awareness is the least of what we need right now- Well, at least the kind we are getting. 

The awareness autistic people are given is the kind awareness we give diseases. Like cancer, or AIDS, and other life taking diseases. With the way they "make people aware" of us, you'd assume we were dying from a deadly, burdensome disease, rather than being born with a neurodivergent brain. 

I hear so many people say "well isn't the autism community after the same goal, isn't all awareness good?" No. No we are not. Not at all. 

I like to think of the autism community and the autistic community as two different things. One of them is filled with fear mongering, Autism Warrior Parents™, #LightItUpBlue, "It's so haaaaard", and seeing all the bad. Their goal is this "awareness" stuff. Then there's the autistic community, which is us, our voices, and our allistic allies who genuinely support us. Our goal is acceptance, neurodiversity, appreciation, accommodation, and educating people. So no, we are not after the same things, maybe the "autism community" is, but these two communities are very different. 

We do need awareness, but not the kind we talk about. That isn't real awareness. It's fear mongering, its assumptions, its lies. It harms autistic people more than helps them. It does not speak for us or represent us at all. We do not want to be seen as monsters, we do not want a cure, we just want to be ourselves. We want you to *accept* that we'll never lead a neurotypical life and maybe never achieve things that you deem worthy on your neurotypical standards, because we are not neurotypical. We are autistic. We will lead beautiful autistic lives and achieve amazing autistic things, even if it's something small. Nothing is small. Everything is big for an autistic person.

This is big. This is not something simple. You can't just claim to care about autistic people but only for a month, only your way. You don't support autistic people if you don't listen to us. And I'm sure some of you have never listened to an actual autistic person in your entire life. 

And if you are today, listening to me, reading this somehow, I want you to know this.

What we need right now is acceptance. Then real awareness. But we cannot achieve that without acceptance. Some people think it's the other way around, but it's not.

People know the autism they've been made to fear, they don't know the autism that I live with; That I am. 

Contrary to what Autism Speaks feeds you, they are not for acceptance. They never were, and surely not now.

Their acceptance is "I tolerate this annoying, inconvenient thing"

Their acceptance is "I love my child but not the very core and most vital part of who they are" 

Their acceptance is "I only accept you when you do this thing I like, or you conform to my standards, or you can pass as neurotypical"

That is not acceptance. That is tolerance at the very least, and not the good kind of tolerance. Autism Speaks doesn't promote the good kind of anything. 

I want you to accept my autism. Not the diagnosis, the fact I'm autistic. I am not a person with autism. Autism hasn't devoured me. It hasn't stolen me. It's not my roommate or some velcro add on. It's me. I am autism and autism is me. It is my neurology. There is no neurotypical person underneath some autistic mask, it's an inseparable part of who I am.

Autism is pervasive, meaning it makes up all of who you are. It takes up all of me. It is how I see the world, how I exist, everything I do, everything I say, everything I am- it's autistic. Don't just be aware of that, accept it. 

Accept my limitations, and accept my strengths.

Accept my autistic traits. 

Accept my stimming. 

Accept my autistic way of being. Instead of fixing me; Fixing us, fix the world.

Fix the lack of accommodation.

Fix the lack of genuine awareness.

There's a lot that needs fixing, but none of this includes autistic people. 

We try so hard to fix autistic people, the way we play, the way we think, the way we communicate and express ourselves, the way we see the world, the way we are. And we in turn ignore the lack of accommodation and the ignorance and fear being promoted, that truly causes autistic people to suffer, and we don't think of this as the cause of autistic people suffering, we just assume that being autistic is to blame. 


Neurodiversity is the radical idea that there is no "normal" brain and no life is better or worse just because of your neurology. 

The idea that your life isn't of less value because your brain isn't wired neurotypically.

It isn't limited to autism, allistic (non-autistic) people can be neurodivergent (not neurotypical) People with ADHD, Bipolar disorder, Tourette's, Dyslexia, Schizophrenia, Sensory Processing Disorder, and Dyspraxia- to name a few, and anyone who's brain is wired outside of typical and affects the way you exist and see the world. Also, deafness and blindness are sometimes included, and sometimes not, but our communities often co-exist for the same reasons, when you are born a certain way, despite the disabilities that come with it, you don't even really think about what it would be like to not be autistic or not be ADHD or bipolar or not be deaf or blind, you'd have to learn how to live in the world all over again, which to me is ten times harder than my disabilities I have now, because I've found ways to accommodate myself and I'd have to find new ways. The lack of hypersensitivity and the ability to just read people would be kind of terrifying to me. I can't imagine not seeing the world in an autistic, neurodivergent way. Neurodivergent people have found a culture within each other. 

What neurodiversity is not is a sugar coding, "differently abled", anti-therapy/anti-meds, B.S. train. What we are is anti-cure, and pro-presuming competence and acceptance. 

I hear a lot of crap about neurodiversity, and all of it is uneducated, messy, just completely fake stuff. I'm not gonna say there isn't overly positive people, they're extremists and I dislike them more than the next person, but that doesn't represent neurodiversity as a whole. Neurodiversity isn't an opinion, or really even a movement, it's a fact. It's just a part of human diversity. You can't disagree with it because it's who we are. It's just as ridiculous as disagreeing with someone's sexuality or race, vital, unchangeable parts of who we are. We, as a society, have come to accept these things as a part of human diversity, why is neurological diversity any different?

It seems to be mostly NT people who question neurodiversity, but I've seen autistic/otherwise neurodivergent people, usually the internalized ableist people who've been fed ableism and cure rhetoric their whole life, and somehow them spewing crap about neurodiversity is far more insulting, well- not even just insulting, just really sad. And it's definitely not their fault, it's the fault of uneducated people spreading misinformation to other uneducated people. 

Medication saved my life. That's not a dramatic statement, it's a fact. Before I started taking medication, I was having such severe mood swings I'd cry myself to sleep and spend my whole day in a cycle of depression, anger, hyperactivity, and extremely dark thoughts. I'd scream and meltdown all day. My anxiety was at an all time high, it was so bad I couldn't function. For lack of a better, more respectful word, but most honest I can say right now, I felt like I was going crazy. I wanted to die. I never would do something like that but I had suicidal thoughts. Mostly, I wanted all the horrible things I felt to go away. Even my best days were still rainy days, I just had an umbrella. Medication is an aide, it's my umbrella, it keeps me somewhat level. I still have my bad days, and they are unbelievably bad when they come, because for me when it rains, it pours, and I'm also growing so as I grow my symptoms and traits will change and so will my certain needs, but I have an umbrella right now. I will need therapy for the rest of my life, for coping skills, for life skills, to be able to live on my own one day and be in this world as an individual. I am multiply neurodivergent, autistic is the big picture but I have a lot of neurological and mental stuff intertwined with being autistic; It's like a puzzle, autism is the picture on the puzzle but then we have all the little pieces that also help to make up who I am. My neurodivergence is a giant, colorful, unique, beautiful mess. And despite my umbrella I'm still neurodivergent. Autistic traits cannot be medicated, unlike other neurodivergence can, but whether your neurology (or some of it) can be medicated or not, whether you can function well or not, whether you ever find an umbrella, neurodivergence is a pervasive thing, it's not an add on, it's your neurology. You see the world in a neurodivergent way, you feel in a neurodivergent way, you exist in a neurodivergent way. Neurodivergent people struggle, they will forever struggle, umbrellas or not, medication and therapy is but an aide, the reality is there will always be bad days. My autistic niece was born verbally delayed, she has umbrellas now to help her communicate, and she can speak verbally, she's very verbal now, but her umbrellas do not make her less autistic. She'll always be autistic. She just has accommodations for it. My sister is bipolar, there was a time she couldn't function and needed to be intensely medicated, now she can cope and has leveled so much she doesn't need such intense medication, but she is not less bipolar. She'll always be bipolar. 

The point is, neurodivergence doesn't just go away, there is no cure, and we shouldn't advocate for one. Because with unique brains comes unique struggles but also unique strengths. My niece is one of the most creative, imaginative, just magnetic and bubbly people I've ever known, she has the most beautiful brain and biggest heart, and she is just so unique, everyone around her is just drawn to her. I can't imagine her being neurotypical, because she's beautifully neurodivergent. My sister is such an amazing mother, she would do anything for the people she loves, and she has a unique way of seeing things and expressing herself. She's good with numbers and art, she's creative, she's funny, and she has a unique way of doing things. I can't imagine her being anything but her. Should our struggles be left unaided and not attempted to be mitigated? No. Not at all. But why cure the very essence of who we are to cure an ounce of what comes with it? When we can accommodate, aide, or "umbrella" it. Curing neurologies isn't only very impossible, but it also is useless. I would not be neurotypical if I somehow had my neurodivergence taken away. I'd just be without a neurology. I'd have no personality, I wouldn't be able to feel, I'd be a mush of a human. Your neurology literally takes up all of who you are and how you do things, and taking it away would take away everything you are. Whether you want to accept this or not, it's fact. And ignoring fact is harmful. Speaking over autistic, or otherwise neurodivergent people is harmful. 

We're not anti help, anti aides, or anti mitigating struggles. We're anti cure, anti "fixing", anti the idea that our lives are less because they're different. We're not different and less we're different not less (and if I see Autism $peaks ironically post that quote overlapping a picture of some kid running on a beach or something, I will scream)

Lastly, a neurotypical life would not equal a better life. It'd just equal another life. Another life capable of struggle, another life capable of hardships, another life of low functioning moments. Neurotypical people can be disabled, they can have chronic illnesses, not all of them are independent. Neurology doesn't dictate the quality of your life, it doesn't dictate your struggles, it's just who you are, and things come along with that. Neurotypicality is not a godlike existence, it is not the only way or the best way, it's just a way. Autistic is a way, so are other neurodivergences. Better? Worse? Neither. Just different.

We're different. That can be good sometimes, that can be bad sometimes, that can be anything sometimes, but all of it is who we are. We do need awareness- awareness for our existence, awareness that we have meltdowns and will have outbursts in public- and that you should not stare at us like we've killed your first born son, awareness of the lack of accommodation, but we also need more than that, we need acceptance, appreciation, neurodiversity, and we also need more action. Instead of being *aware* of how to treat autistic and otherwise neurodivergent people, we need to start treating them well. Instead of being *aware* of the lack of accommodation, we need to work harder to fix that. Awareness can never work on it's own, we need more. We deserve more. 

Please keep your "awareness", it isn't aware of me.

And it doesn't accept me. 


5. Autism is a spectrum. And it's pervasive. 

Autism is very much a spectrum and not at all linear. No two autistic people you meet will ever be exactly the same. In fact, most autistic people I've personally known have all been extremely different from me, with a few similarities, that's how it is. And it's perfectly okay.

So when I hear the argument that an autistic person can't just, like- frankly, exist as an autistic person, because they're "not like my child" it annoys me. OF COURSE I'm not like your child. And your child is not like me. 

Another argument is that pretty much anyone who is verbal, has the ability to read, write, or use a computer, or is an adult or not a boy (therefor "high functioning" to Autism Parents™) doesn't have "that kind" of autism, and cannot talk about autism at all.

"That kind" of autism you say your kid has- they have meltdowns a lot, they cannot take care of themselves- hey, guess what, I have "that kind" too. I'm a "severe" kid. But you wouldn't know that by looking at what you see on the outside, would you? You would not. 

When I hear people talk about how "my kid doesn't have the type of autism everyone talks about" I just have to laugh. Do you know how much is out there for non-verbal, young boys? If I want advice on meltdowns I get advice for a 3 year old, non-verbal boy, and just about anything I could ever want advice on. If anything- that's all we talk about. Non verbal, young boys are the default. People like me, who are mostly verbal and not a boy, we're thrown under the bus for presenting differently- and called "high functioning" by people like you. Your kids "type" of autism is all I hear about. It's all over google. There's few places I can go for resources. I hope this doesn't sound like I'm trying to compete or compare, I'm not at all- I guess what I'm trying to say is, is that  autism is such a spectrum and it needs to be treated as such, instead of like a condition separated into such extreme halves with defaults. 


There's so many analogies I could use to describe autism, but there's one I recently came across that is absolutely brilliant. Since my editor sucks with links, I'm going to link it in the resource post, it is the one by "utterlyafk" 

Basically, autism is like a color. Everyone's shade is different, but that doesn't make them less or more autistic, or more purple or blue or red, just a different shade.

"High functioning" and "low functioning" are silly labels to me. They're completely based on assumptions. I'm not non-verbal, for the most part, so yeah- I'm high functioning in that area. But I also have severe struggles, some of which "low functioning" autistics don't experience, a lot of which greatly affect my communication. 

My shade of autism comes with severe social struggles (classic "Aspergers" traits like reading people, difficulty with conversation, and all of that. But also the "classic autism" of having no interest in social interaction, a lot of which is due to anxiety and sensory reasons), comorbid mental health issues which intertwine with my traits (anxiety, severe mood swings, etc.), severe sensory issues, emotional issues, severe exhaustion, *periods of going non-verbal*, other communication struggles like auditory processing and getting my words out, lots of stimming, horrid executive function/self care/independence skills, and a beautiful, unique, creative view of the world and a hyperfocus on things that interest me. These are just the basics, everything I do is autistic, it is pervasive, it runs through my veins. Nothing about me is untouched by autism. It would be super convenient to be high functioning, but I'm not. Maybe on the outside I seem that way, and a lot of autistic people seem that way too, but we aren't. 

Someone else's shade can be completely different. For instance, someone can be non-verbal, have poor self care and executive function, but be a total social butterfly, not as many sensory issues, and genuinely "higher functioning" than I would in that area. Someone else may have just "Aspergers" traits such as reading people and socializing, but not as many sensory issues or meltdowns or independence struggles. They may go on to have a family of their own and may do just fine independently, but social struggles are an exhausting, daily struggle. And just as valid. Both of these examples are definitely "higher functioning" in areas I am "low functioning" but I may be "high functioning" in areas they are "low functioning"

There's just so many different ways to be autistic. Some people require routine, some despise it or only need it in some parts and must always be going and doing. Some are very social, some aren't social at all. Some are highly verbal, some are not verbal at all, some are in between. Some stim all the time, some don't stim at all, some are in between. Some only experience meltdowns, some only experience shutdowns, some experience both, and I'm sure there are some who have experienced neither. Some get exhausted easily, some are overly energetic, some are somewhere in between. Some have families of their own, some will never live independently, some are in the middle of the extremes. Autism is not linear. It is a huge, colorful spectrum and so, so diverse and unique. There is no one way or "wrong" way to be autistic. It's your neurology, and no ones neurology is exactly the same as someone else's. Comorbid conditions come in equation too, some struggles are enhanced by co existing conditions. Like ADHD, Down syndrome, Depression, Anxiety, Bipolar Disorder, OCD, physical, learning, or verbal disabilities, chronic illnesses, etc. 

The point is, we all function differently in different situations, and how we function one day in that situation may be completely different the next. This is true even for Neurotypical or otherwise allistic people. I'm not denying there are high functioning aspects to autism, some I might have, but then there's people who are considered lower functioning than me that function trillions better than I do in some situations. The point is, labeling human beings and categorizing them into boxes helps no one. You never hear people say "mild" or "low functioning" Neurotypical, so why is it the same with us? Just because we're not neurologically typical doesn't mean you can just dehumanize us and categorize us into patronizing boxes and put all these standards on us. We can exist autistically without labels and expectations to act and be a certain way, or be like another autistic person. Regardless of how we function or don't function, no one can be "mildly" autistic, just like no one can be "mildly" Neurotypical, or otherwise neurodivergent. Our neurologies make up the very core of who we are. Autism doesn't just exist in only good or only bad parts, it's just all of you. It's not a pick or choose thing. So comparing autistic people is silly. And what's even sillier, to put it simply, is saying "I love my child but not their autism" then you don't love your child. Your child IS autistic. Whether you "want to define them by it" aka face the truth or not, the bad stuff is autism, but so is the good stuff, so is everything in between. It's a pervasive developmental condition, pervasive is defined as to make up all of a thing or a person, or to spread through it. Autism spreads through me, there is no inch of me left untouched. Traits can *present* mildly, and not everyone has the same ones, but that doesn't make someone severe or mildly autistic, you're either autistic or you're not; There's no in between. 

Likewise, there is no autism "look" or default way of being. You're just autistic. Is it really that complicated? 

And for those wondering what we call those who present differently than another autistic person if we shouldn't call them high functioning or low functioning or the likes, we just call them different. We just call them autistic. Is it really that complicated? 

The autism spectrum is this colorful, bumpy, squiggly, unique, up and down rainbow ride, and it's too beautiful and too diverse to have little labels and boxes planted in its colorful grass. 

A few last things I want to add on this topic, even if there was a "high functioning" autism or a "low functioning" autism, being autistic means you have struggles, regardless of how well you function or not. There is a degree of disability that every autistic person has. I do know autistic people who in some sense function better than me, and I might function better than someone else, but my severe struggles and their severe struggles also make them low functioning in other aspects. Functioning labels are ultimately used to box up autistics and also speak over us in other ways.

A quote I love on this topic is "high functioning means your deficits are ignored, and low functioning means your assets are ignored" and that is so accurate.

You see an autistic person who is verbal, or has a high IQ, and maybe can live on their own, and you see that and assume they're high functioning, they've never struggled like "your child", and never will. They're only a little bit autistic. Just enough to make them quirky, awkward, absent minded professors. 

You see an autistic person who is non-verbal, or intellectually disabled, and maybe cannot live independently, and you assume that they have nothing to contribute to society. You assume that they must hate being them, that they suffer, that they're the "bad" "worst" "severe" kind of autistic. They "deserve" a cure you say, and the "high functioning" people don't get to say anything because we don't struggle enough to even need one. I see non-verbal autistic people talked over and used for the cure rhetoric agenda so often, but they are some of our greatest, wisest advocates and some of the strongest neurodiversity supporters I've seen. Amy Sequenzia is a prime example, she is one of the most brilliant, amazing neurodiversity advocates I know of. She's a warrior, I admire her so, so much. To say she likes who she is is an understatement, she's anti-cure and pro-neurodiversity and one of our fiercest advocates. She speaks with alternative communication and she lives a beautiful autistic life. 

One day I stumbled upon an Autism Warrior Parent™ blog somehow, and they were talking about how "aspies" don't need a cure because they don't have the "bad" side of autism, they have the good side and they wouldn't be them without autism, but autistic people like this persons son *deserve* a cure, because they *would* be themselves without autism and they wouldn't struggle. This person also pointed out an autism advocate who is non-verbal. Because said advocate is so outspoken about their struggles they have as an autistic person, the blogger assumed she wants- *deserves* a cure, and would take it in a heartbeat. I'm familiar with the advocate he mentioned, and they haven't talked about a cure ever, nor necessarily about acceptance, just their journey and their life, their struggles and strengths. There's all kinds of autistic people advocacy and they're important. If this person did want a cure, well, I would not agree at all- I've seen my share of autistic people who want cures and I don't see that as "evidence" that autism "has its bad sides" I see it as people who've been fed ableist ideas by their families/the media/etc. and internalized it. I also would hope they knew a cure is impossible and that being autistic is who they are and that curing it would cure all of the great things being autistic can bring, but it's also their thoughts and I will not argue with it. I advocate neurodiversity so people who think autism needs to be "cured" whether allistic or autistic themselves, can educate themselves and hopefully change their minds. As I was saying- you cannot assume because someone is open about their struggles that somehow that means they hate being autistic. Using non-verbal advocates as your prop for cure agenda is so sickening. An autistic person is not your object for you to expose for your own gross ideas, they're a human being and are allowed to be open about their struggles without being labeled or assumed. Whether an autistic person loves themselves or hasn't gotten there yet, or never will, is for them to say. Not you. 

Autistic people are not objects here for you to box up and put millions of different labels on. We exist and that's enough, we do not need to be defined by your standards or your idea of what makes us worthy. None of us are less or more, in so many different standards, we're just autistic humans trying to get by in this world like anyone else. 

Functioning labels are not medically acceptable, they do not help anyone- they either just completely dehumanize or create a barrier between the person and services. Nobody functions low or high all the time, not even neurotypical people, and we don't label them like this- so why do we label autistic people like this? 


6. Autism does define me. 

My friend Gray and I were talking, joking about Autism Speaks and such, and they said the truest, most brilliant thing ever. "Put the person miles before the autism, but still leave them behind" (if you don't already, you should totally read Grays blog, which is consciousimperfections.blogspot.com  Gray is an amazing voice on autism, a phenomenal writer, so funny, and a wonderful human; One I'm so glad I've gotten to know) 

Gray's words made me think about this giant topic, and just how ignorant people are to it.

I am autistic. It is my neurology. It is the very core of who I am. There is no part of me uncolored by autism. It's all autism. Not just the bad stuff, not just the good stuff, all the stuff. It's all autism.

My sensory issues, social issues, communication issues, executive functioning issues, my meltdowns and shutdowns and exhaustion- they're all autism. But people think it stops at that. That autism is some monster that devours me and wraps itself around me and all the good inside of me must be rescued from it like a damsel in distress. This is not the case.

Because my writing, artistic, musical, and advocacy abilities, my unique view on the world, my honesty and genuineness, my hyperfocus on details and what I love, and all the other very best parts of who I am- they're all autism too.

You see, autism isn't a pick and choose thing, it doesn't just affect your child in inconvenient ways, it affects them in every way. When you say it "takes up everything!!" you're correct, it does. Not just your life, but your child's neurology. 

The good, the bad, and everything in between is all autism. And if I were not autistic, I would not be me, and I would not be anything. I'd just be skin and bones and organs, but no feeling or thinking or anything else; I'd be a shell of a human.


I come across a lot of quotes along the lines of "put the person before the disability!1" "autism doesn't have my child it doesn't define him his wonderfulness does" "I love my child but not their autism" "if you only see autism you miss out on a wonderful person" As well as a lot of NT people trying to be all good and progressive by coming onto posts about autism (a lot of them BY autistic people, mind you) and being all "uMM don't you mean person with autism, see the person not the disability uwu" 

Sigh. Where do I begin? 

If you need to ignore my disability to see me as a human being, then my pal, it is you that has a problem here, not me. 

You cannot love someone but not their autism. If you do not love the very core and defining part of who they are, then you do not love them. You cannot choose how your child is born, you cannot love your child but not their blackness, or their gayness, or their brown eyes. Otherwise you do not love your child. It is that simple. And it is sad. 

By seeing me as, ya know, *me* you are not missing out on a wonderful person. I am a wonderful person. A wonderful, autistic person. 

Whether you want to understand it or not, autism does define me; You cannot separate me from it. My autistic neurology is intertwined in everything about me. It's not just a part of me, it is me. 

A quote from the brilliant Sparrow Rose Jones "Autism is not a shell around a normal child" There is no neurotypical person underneath me, autism isn't some velcro add on or cloak that I can take on and off, or some monster that eats me alive, and underneath is some good neurotypical kid who must battle the Big Bad Autism™. 


We say "person with autism" like we say "person with cancer" or other diseases, as opposed to 

In fact- this reminds me of a very gross, very angering Autism Warrior Parent™ post I came across one day. 

I stumbled across a post once where a parent, I kid you not, said something along the lines of "we say person with autism like we say person with cancer, because it's something [our son] has and fight his whole life, like cancer" 

I wanted to scream, and puke, and get angry, maybe even cry, but I couldn't do any of that. I was just stunned, all I could think was "did you say that. Did you just say that. Do you really think that" and this passion burned inside me, a new kind of anger, I wasn't angry at this person, I was angry at the true ignorance- ableism, in this world. I didn't want to get angry, I wanted to educate them.


Autism and cancer are not comparable. Just saying that feels silly and like an understatement. I shouldn't have to say this. 

Reasons why autism and cancer are alike: No ways. None. Nothing. A deadly disease and a neurology cannot be compared. It's like comparing a chicken to an orange.

Reasons why autism and cancer are not alike: Cancer kills people, often young people who fight so hard to live, but their lives are cut early. Autism is a neurology. Some cancers can be cured (all could, but we're spending all our time trying to cure my neurology. Right) Autism cannot be. You cannot strip someone of their neurology, you cannot "take all the bad stuff away but leave the personality" You cannot create a neurotypical person out of an autistic person, because to do that you'd have to take out my neurology and a neurotypical persons and apply theirs to my brain. THAT ISN'T POSSIBLE. The only other cure is killing us and if you think that's a good idea please turn yourself into the police and claim your new life in a jail cell. No good human being thinks that, no good human being kills autistic people, no good human thinks autistic people are less than human and therefor their murder is less important or justifiable. 

I could go on and on. I do not have a disease, and I am so damn lucky. While I'm not perfectly healthy, physically and mentally, I am healthy enough. And if your child is healthy or healthy enough, you should not have one complaint.  

Autism can be a huge struggle, I get it, it not only impacts autistic people of course, but everyone around us. I get how hard it can be, I see how hard my family can have it sometimes, though they love me as I am and presume competence of me, which I am so lucky for, but shouldn't be. 

Imagine a childhood spent in basically an incubator. Tubes poked in your skin and medications poured down your throat, going to sleep and waking up every morning not knowing if it's your last, constantly being given estimated life spans and expiration dates. Cancer takes everyone's life with it. It is a burden, it is ruining lives, it is stealing children. Autism is not. The struggles of being autistic and loving an autistic person are so different from dying of cancer and having to pick up the pieces of a loved one literally being stolen from you.

Autism hasn't stolen your child. Autism hasn't ruined your life. Autism hasn't literally fricking killed millions of children and taken them from their parents hands. So when you say autism is like cancer, I'm not just personally offended, but I'm also disgusted, and beyond angered and horrified how anyone could ever, ever make a comparison like that.


The language is not what's important here. 

Lots of us use "with autism" from time to time, by habit, without thinking, grammatically incorrectly if I may add. But this is not the problem at hand, while I do strongly prefer that you say "autistic" rather than "with autism" it's not as important as the meaning behind why you say it. 

If you are insisting on calling me "person with autism" or "person who just so happens to be suffering from the horrible spooky disease and being eaten alive by autism" or something like that, because you want to ignore my neurology, and in hand ignore what I- and so many autistic people - are telling you. If you are calling me that because you see my autism as an add on or a disease or a shell around me.

That is the problem. 

That is why identity first language matters.

I am autistic.

It pervades my whole being, it colors my very existence, and it dances through my veins. I am wonderfully autistic, your child is wonderfully autistic, and there is absolutely nothing that needs changing- except for ignorance. 

Ignorance is the real disease here. I'm hoping we have cure walks soon. 

"Here's a pamphlet, please actually read it. It is the cure this horrible disease you suffer from. If you choose not to, you are far worse off than we thought." 


7. Autism isn't a tragedy.  

Burden. Ruiner of families. Soulless. Monster. Missing. Diseased. Epidemic. Tragedy. 

These are just some of the words I've seen, read, and heard used to describe autism. 

We speak of autism like it's some fast acting disease, claiming people quickly, the rates are rising, and we must quickly cure this spreading disease!!

I used to see this and hurt, and I'd get angry, but now I just laugh, and I am filled with passion and eager to educate. It's shown me how far my community has come and how far we have to go.

I laugh because you think I'm scary. When I'm just a- well, I'm not a "normal" human but I lead such a typical life- for me, that is. I stay at home, I hate confrontation, and one time I stepped on an ant out of anger and I was so upset with myself; And then I realized the ant was still alive and I rushed to grab a leaf and help it back to the grass. Please, run away while you still can. Run away from this scary autistic.  

I get a kick out of it. The fact people are so afraid, and dare I say- envious, of my individuality that they cause such a panic over it, it kind of gives me confidence in a way. If I can scare at least one ableist in my lifetime, which I'm sure I have, I have accomplished something beautiful. 


This society is so afraid of anything outside of their preconceived notion of "normal" that we see neurodivergent people as less human, or not human at all, and therefor we can just talk about neurodivergent people without them, we can believe we know better than someone who actually lives a neurodivergent life, we talk about cures and things without asking neurodivergent people what their opinion on it is, we assume that neurodivergent lives must be so miserable that we "deserve" to be cured of this horrible affliction; If we do anything it's "inspiring", if we're smart like any other human we're "savants" because apparently being neurodivergent means being unintelligent, if someone shows a bit of kindness to us they're a "hero", neurotypical/non-disabled people get murdered- we get "mercy killings" and "oh, it must have been so hard to live with them"  


Autism isn't a tragedy. It doesn't make me some sort of sub-human. It isn't a "devastating disease" that needs to be cured. It's my neurology. It's who I am. 

I could write a list of all the famous, brilliant people who are or were on the spectrum, from Einstein to Van Gogh, but showing you how our neurologies have literally changed the world shouldn't be the missing piece in getting you to see us as valuable humans like you.

We're not all going to do neurotypical standardized "amazing" things, for some a great accomplishment is living another day or going outside or tying their shoes. And guess what- they're freaking amazing humans, who are as valuable as you. I don't need to be a genius, to invent something that changes the world, or do anything that improves your life to be respected as a human. Because that seems to be the only way you accept us- when we do something that benefits you.

Screw that. I'm a writer, an advocate, an artist, a musician- I'm going to put things in the world, hopefully change it, and spread my message. Maybe not every autistic person is going to do that, but the world is a better place with them on it. You can try, you can do your little research studies, but don't ever doubt the power of a passionate group of individuals who fight against it. 

We're here telling you to listen. That we are not a burden, we are not your test study, we are not some humanoid creature. We are human. Autistic humans; We are different, not less. I see you post that quote, set in front of a happy child running on a beach. Please, if you're going to use that quote- mean it. 


8. Autism doesn't end at adulthood. You do not "recover" from it. And it's not just a boys condition.

There are two really huge misconceptions about autism, one being that it is a childhood condition- and one you can grow out of, at that. The other being that autism only affects boys. And if you're an autistic female adult, well I'm sorry- but I guess you're not autistic! Call it off, pack up your autism and send it back, you heard it here- you're not autistic! 

Yeah, okay. 

One thing I hear so often when girls are finally freaking represented is "uUUmm, isn't autism more in boys? So wouldn't that like, be more accurate"

Listen here, Tom, 

AUTISM ISN'T JUST A BOYS NEUROLOGY AND TALKING ABOUT AUTISTIC GIRLS/OTHERWISE AND HOW OUR TRAITS PRESENT IS HOW WE CHANGE THE IDEA THAT IT IS. 


So I constantly see anti-vaxxer curebie people talking about ridiculous, totally stupid stuff like how "autism is an environmentally inherited illness" - that one I heard on a whole website. Just dedicated to people who think that. All right. 

Also I saw someone somewhere arguing about people who are diagnosed late can't POSSIBLY be autistic because like, you become autistic after diagnosis and you can only be autistic as a child, dUH!! 

Like, I don't even wanna critique any of this. I just kind of want to type it out so I and fellow autistics can laugh at it. But like, some people think this is like...true. So I'm gonna tell you why it's not. And it's why it's hilariously stupid. 


Let me dispel a few common beliefs:


1. Autism is only in boys. Wrong. Autism is *diagnosed* more in boys, but that is because those who aren't boys tend to present very differently, we tend to mimic and because our traits are very different and we focus on males in the diagnostic field, girls & otherwise go undiagnosed. And also, verbal ability and IQ often play a part in diagnosis as well, which due to stereotypes and assumptions often leaves some boys with a late diagnosis too. Autism is a spectrum and it's time we stop associating it with stereotypes and start associating it with the unique people lucky to fall on this spectrum, and their unique individual experiences. 

2. Autism is a childhood condition. Again, so wrong. Autism is a neurological wiring, it is a forever thing, and while traits can change and *some* struggles can be somewhat mitigated by adulthood, you do not "grow out" of your autism, in fact, you kind of "grow into" it, in a way. Once you've lived an autistic life so long you find ways to accommodate yourself in a world that doesn't naturally do so, and you find your own "tribe" of autistic or similarly neurodivergent people and you genuinely just learn to love the way you are, and that in itself mitigates a lot the anger and depression and uncontrollableness autistic people often go through. This stereotype is also wrongfully attached onto some other neurodivergent conditions, like ADHD especially, which like autism, do not just magically go away. They're there for life, my friend, and if that is disappointing to you then don't worry, you have the ability to learn for a lifetime just like I get to be autistic for a lifetime! Woo! 

3. Autism is something you "catch" Ah, yes, I am a spooky contagious autistic, and I spread autism to everyone near me like my allistic parents and sisters, woooo /sarcasm. 

The easiest argument against this is the fact that if autism were something you could catch, if it really were a "environmental illness", my parents, my sisters, and any other allistic person around me would be autistic. But they're not. But maybe they're just really good at holding their breath around me- Haha, I kid, I kid. 

4. Autism is something you "recover from". A lot of people believe this is true because Huffington Post interviewed kids who beat autism and therefor it MUST be true! Sure, Jan. 

There's two ways a kid "recovering" from autism is phony baloney. 

1- Misdiagnosis. A child is born with a speech delay, or they have meltdowns often, and it just so happens you put your family on a holistic gluten diet and WOW! The autism has just MAGICALLY DISAPPEARED! Speech delays and meltdowns can come from many other things besides autism, and they can also be temporary, so it's possible said child was never even autistic, just had traits that appeared to be that they grew out of. And as for the gluten, vaccines, or even damned Peppa Pig (Google it, a legitimate study)- correlation does not imply causation. There is no real proof or good research on any bull crap "cause" of autism. I was born this way. Why? Who knows. Do I need to be "cured" or "recovered" from it? Absolutely not. I like being me, thank you, and if you'd listen to your kid you'd probably realize they like being them too.

2- Forced mimicry. Abusive therapies are often something many autistic kids have to experience, and it breaks my heart, and it's very common in situations like this. People put their autistic kid in therapy to "normalize" them, which involves FORCED mimicking skills, so OF COURSE they're going to appear neurotypical. They were taught to MIMIC! When you're put in a stressful, abusive, negative environment, like a chameleon, you blend in to cope, it's a natural autistic behavior, common in girls but exists in boys too. I wasn't diagnosed as autistic until I was 12. I've always been so very obviously different, so very obviously autistic. So how wasn't I diagnosed? Mimicking. I wasn't even any good at it, but if you don't have meltdowns in class, you're their standard of intelligent, and you're verbal- they don't even look into it. Half of these kids who are interviewed in articles about "beating" autism all have these autistic traits that are so obvious to me. Lots of them don't look at the camera, fidget, and all sorts of things. I see fear in them. They're being forced to be this way, they're being crammed into places they don't fit, and eventually after stamping on a piece for so long, you realize that you just gotta do the puzzle right. They will pop out, because they don't belong there. So don't be surprised when the "miraculously cured" get "their autism back" aka the destruction of a mask, which leaves you vulnerable and emotional and often looking as if you've "regressed" Please read the experiences of autistic adults who've been through abusive ABA, it is so important. 


9. Presume competence.

In the Autism Parent™ community, and the likes, I hear and see a lot of "never" and "can't" and just overall emphasis on every bad thing about autism and everything we "can't" or "never" will be able to do. I understand, there's a lot autistic individuals realistically will never be able to do. We're disabled, we're "differently abled" too, but I'm not here to sugar coat over disability. I love being autistic but I will not ignore that it has some very real struggles, and there are things I realistically will never be able to do. But there's a difference between accepting the realities and presuming incompetence. 

Presuming competence is vital. By not presuming competence you are adding another set of disability to your child, because you see them as incapable and therefor nothing they ever achieve will be of your standard, and ignorance- no, just pure ableism is the most disabling thing an autistic person will ever know.

When I, and my parents, accepted my disabilities (though they've been accepting from the very start, but it was I who had to learn), and embraced what I can and cannot do full stop, is when we found I could go farther than I, or they, or anyone thought I could. I am who I am, and that's how it's always been in my house, we accommodate what needs to be accommodated, we talk about things, we listen, we mitigate struggles as best as we can, we embrace abilities, we embrace disabilities, and we love who we are. That's how it should be. No family, no child, no life, no anything or anyone is perfect, and that's just how it is. Your (as I've said, general use of "you") child is different, not less. They are disabled, and also "differently abled", they have strengths, and they have weaknesses, but just because they do things differently than you would or outside of your narrow and closed minded idea of "acceptable", doesn't mean they are less. They are far from less.

You know what, maybe your child will never be independent. Maybe they'll never work a "normal" job or do "normal" things. Because guess what- they're not normal! You're not normal, nobody is normal. What is normal? It's a social construct. It's something nobody can agree on, and something we all have our own idea of. It's a useless, silly thing to aspire to because it's literally nothing. Every single human is weird. And that is a beautiful, beautiful thing. Your child will do their normal. They'll do what makes them happy. They can, and WILL, have the best life, but only if you let them. Autism isn't holding anything back, it is those who don't presume competence of us that are. 


Autistic and living a good life aren't mutually exclusive, we do lead good lives- autistic ones at that, even if we don't hold up to your standards of what a "good life" is. 


10. It's not about you. 

A horrible thing I often hear from Autism Parents™, though it's common, is "I'll never love my kids autism because..." 

And it's funny because all the things they list are never about their kid, it's about them.

My child will never work the kind of job *I* want them to.

They'll never achieve anything *I* deem acceptable.

They'll never behave or function in a way *I* think is appropriate or good.

It's always me, me, me, I, I, I. (I totally spent a good 10 minutes just repeating "me, me, me, I, I, I" in my head and mouthing it to myself. It's very echolalic. Anyways) 

So what if their kid is happy being them and doing what they find enjoyable? It's not what *they* wanted, so therefor autism is a horrible disease and the child is broken.
Right...

"My child has autism and it affects our daily life so it's kind of like I have autism too"

"Autism parent stress is comparable to combat veteran stress!!"

"Imagine constantly feeling so out of place, so alone, so misunderstood, like an alien. That's what a parent of a child with autism feels like"

Those are literal real quotes and I had to hold myself back from vomiting while typing them out. 

For anyone who says anything like that or more, or has this Martyr complex, this idea that somehow everything is about them and they're the very center of the universe- first of all, you need to work on yourself. Because this isn't your autistic kids fault, it's just a very damaged way of thinking.


I see it all the time, the way the world just talks over us, speaks for us, talks to our siblings and parents and friends instead of us. They talk to us like we're two and can't understand a word they're saying. If someone shows us an ounce of kindness to us they're a hero. 


That is ableism.


Ableism is hating disabled people so much having a disabled kid feels like you're giving your life away just to raise a kid like any -for a lack of a better word- *normal* mother would. 

Ableism is talking about your autistic loved one as if you're the one who is autistic.

Ableism is thinking that raising your damned kid is as hard or anywhere near comparable to literally fighting, and possibly dying for your countries rights.

Ableism is thinking of autistic (or otherwise neurodivergent/disabled) people as less human, or some other species entirely, and talking to us like we can't comprehend a word you're saying even though we tend to understand more than you'd think. Ableism is thinking we're somehow locked inside or missing when we're standing right there. We're not ghosts, Carol, use your eyes. Don't listen to my mother or my sister, LISTEN TO ME! 

Listen to autistic people. 


Imagine living in a world where nobody listens to you and sees you as less somehow. 

Imagine living in a world where you feel like you don't belong and everything is so confusing. There's all these unwritten, ever changing "rules" and you can't keep up, it's like you speak this completely different language than everyone else, and even if you learn it, you still speak with an accent and tend to be able to pick up on who else isn't native to this language because they have an accent too.

Imagine living in a world where everything is so extreme, so fast, so constant. Imagine living in a world where you try so very hard to understand people but most of them don't even try to make an effort.

Imagine living in a world where you have to fight to be accommodated because everybody is so afraid of different they'd rather fix you than the shitty- yes, shitty, that's the most articulate word I could use- way we're treated, and the lack of accommodation and acceptance.

I'm not talking about what it's like to be a parent, I'm talking about what it's like to be autistic in a world that is set up for and favors neurotypical people. 

You're no hero for "putting up with us" Especially parents, because hey- I get it, parenting can be hard. It can be really damn hard. But not because of autism, because it just is. I consider lots of moms heroic, not because of autistic kids, because they have to take care of a mini human and themselves!! How?? Do you?? Do that? Dunno, but it's amazing to me. I can honestly say that's one of the things I just will never be able to do, but luckily, I'm not what the people call a "kid person" 

An autistic or otherwise neurodivergent/disabled kid is theoretically no harder than a neurotypical/able-bodied child. 

Any argument you give me can be shot down. I know my stuff.

"Autistic kids are a financial burdennnn" I get it, the world sucks and it isn't accommodated for us, therapies and accommodations cost a crap ton of money, and it's hard, I get it. But then I see NT kids my age who's parents are practically spending their college fund on soccer and dance lessons, which they probably will lose interest in by high school, I'm like- well, aren't all kids a financial burden? Like, the stuff my parents have to pay for are actual very serious things, it's not my fault I need things that this world doesn't naturally give me. Kids are a financial burden, living in this world is a financial burden, money is just a problem in so many ways and I just don't see how it's autism exclusive.

"Autistic kids are just harddd, they get violent sometimes!!1" I want to directly quote my mom "you are easier than your neurotypical sister was during her teenage years" 

Kids kick, kids scream, kids get angry at their parents. Teenagers are a different story, they're a mess no matter what their neurology is. Kids. Are. Just. Hard.

Autistic kids are different than NT kids, but they can both be equally "hard" to raise and live with. Autistic kids also have advantages, we're less likely to give into peer pressure (for instance, doing drugs), we tend to mature quicker than most kids, we're very passion driven and less likely to be distracted by things our neurotypical peers are like dating and small talk, and so on. And there's advantages neurotypical kids have, but this isn't the point.


We need to stop blaming autistic kids for bad/ignorant parenting. We need to stop blaming autistic kids for the ways of the world. We need to stop talking over, speaking for, and blaming autistic kids.


Our struggles are ours, not yours. Our struggles are in ways much greater but most importantly very different from yours. Our struggles deserve respect and accommodation.

Our voices are the most important voices about autism. Our existences are not less. 


Stop making autism about neurotypical people. 

Stop talking about us without us. 

Stop. 

Just listen. Listen, read, educate, think. 


This is just one month, it has no real significance. Autistic people are out here everyday  using our voices, we want to be listened to. We don't want to be spoken over. We will not allow you to speak over us.


Autistics speak.

Autistics speak and it's time to listen.

Not just in April, not just on some "Autism holiday"

Now. Always. Forever.


That's what I want you to know this month. And more importantly, every month. 

But I am just one voice, please see {this resource post} to learn more. There are thousands of words and not enough to explain it all in one post. 


And to my fellow autistics, Happy April. You are not to be silenced by a blue light, you are not a puzzle to be solved, you are not a burden to those around you. You are a beautiful being, who feels and sees the world with an intense, unique wonder and some of the most beautiful souls I know. I love you, you are my siblings, every one of you, please take care this month. It is a stressful time but it is just a month. It is just another month. 


Sincerely,

Skyler. Proudly autistic.