Happy Autism Acceptance Day!

April is generally one of my least favorite months, but I’m trying really hard to focus on it being Autism Acceptance Month – instead of paying as much attention to all the harmful “light it up blue” things. I’m too close to burnout to be able to deal with it this year.

Fingers crossed I actually manage to get through this month without going hypertensive.

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Unsuprisingly, a lot of people aren’t really sure what to think about the idea of Autism Acceptance.

I think a lot of parents and professionals are often exposed only to the negative aspects of autism – to the point where “acceptance” absolutely takes them aback. They automatically assume that we’re ignoring the stressful parts of being autistic – which is definitely far from the truth.

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When we talk about autism acceptance, we aren’t minimizing the hard parts.

I will absolutely and 100% own the fact that being autistic is hard.

Sensory issues are an absolute nightmare, communication and socializing is really overwhelming, executive functioning is the Worst, the very delayed milestones can be stressful and embarrassing for us, and I’m not even going to get started on emotional regulation.

There’s a lot of things I don’t talk about on here for privacy’s sake – especially since I prefer to keep things semi-professional/don’t always feel like doing the “self-narrating zoo exhibit” routine. I’m definitely not minimizing here – especially if we’re talking about co-occurring conditions that can make things even harder sometimes.

And remember, I have two autistic brothers. I’m fully aware of the parenting aspect too – from worrying about his future, stressing out over medications/therapies and IEPs, to learning how to help him best cope with meltdowns.
I’ve gotten hit, bitten, punched, scratched, and everything else over the years as we learned together about handling emotions  – but I know from my own firsthand experience that meltdowns are much more distressing when you’re the one having them. When it came to those meltdowns, he was just a little kid trying his hardest to regulate some large emotions – something that a lot of adults struggle with too!
(Note: he knows I write about this stuff and do advocacy work. If he changes his mind and decides that he wants me to omit this part later, I’ll delete it – because his privacy matters too. But for now, he’s okay with it. He’s starting to learn about/do self-advocacy now himself, and I’m so proud. )

Seriously, there’s a lot of aspects of being autistic that’s stressful – but you’ll find that each person has specific things that they struggle with, autistic or not. Autistic people just have some additional difficulties – especially because we’re in a society that is definitely not designed for us.

If we’re being honest, society often creates the most barriers for me. Barriers facing employment, accessibility, being able to live alone safely, negative stigmas attached to how my brain works, and so many other things.

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I’ve already had one meltdown this month, and we’re only on day two.

Do you know how hard and emotionally exhausting it is to hear people talk about you and your condition – saying you’re a burden, a product of an epidemic, a drain on society?

Do you know how hard it is to sit and listen about people talk about you as if you’re not in the room?

Could you imagine listening to people say that your parents must be saints to have put up with raising you, and then being told “that’s understandable” when you politely mention that you were actually a ward of the court?

Would it upset you when people told you *to your face* that you should have been aborted, and that you should be sterilized or “put down” because of “poor quality of life”?

Or – they flip it over and say “you’re not actually autistic” or “you’re nothing like my child.” (To which I would love to remind that they definitely haven’t lived with me. My former roommates, friends, and fiancé will all tell you that living with me is definitely an interesting time. There’s a reason my paperwork says “severe limitations” on it. Also: here’s a friendly reminder that functioning labels are useless and dehumanizing.)

 

This is what we put up with every single April. It’s either “you’re a burden” or “your experience isn’t important or valid.”

Do you know how much I’ve had to restrain myself when people have said things about my youngest brother’s death once I mentioned he was autistic?

“Well, that’s probably for the best.”

“He’s better off that way, anyways.”

Because to a lot of people – even the so-called “advocates of special needs people” see us as lesser. And to them, our existence and lives are a tragedy. 

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That’s why I can’t stand Autism Awareness Month. It’s a month long reminder that the world sees myself and my loved ones as less, even from the people that we should be able to trust the most. People post videos and blog posts talking about how their children “ruined” their lives, sharing videos of their children struggling with meltdowns that are emotionally devastating for the kids, and literally talk about how they wish their child was dead.

I hate myself enough as it is; a month-long party for people to talk about how awful it is that we exist? No wonder I’m having meltdowns.

 

And that’s why we need autism acceptance – because awareness alone translates for most people to pity us and hate our condition.

Autism awareness screams to the world “look how horrible this is” and stirs up a lot of negative emotions towards people that are autistic. It’s turned into not just raising awareness and information, but almost a fear-inducing/anxiety campaign about how hard it is to “deal” with our kids.

Autism acceptance, however,  is a little different. It’s not “everything is fine and happy.” You ask most autistic adults and they’ll straight up tell you that it’s really hard to be an autistic person in a neurotypical-run society.

Autism acceptance is about acknowledging that autistic people have a unique perception of the world, and that we shouldn’t be shoved aside or hidden away as a burden or tragedy. It’s about fighting for those supports that we and our families desperately need – and keeping the focus on helping us develop the skills to make our own decisions and self-determination.  It’s about celebrating that our differences don’t make us less, and that our lives don’t have to follow the typical pattern in order to be valued and worthy.

It’s also about celebrating autistic community, too. When we get together, some really cool things can happen.

• We share cute animal pictures or facts about our special interest when someone is stressed – because we want so much to “fix” whatever is going on.

• We come up with creative solutions together, such as using color-coded badges to help with socializing.

• We share what different coping skills work for us, in hopes it can help someone else.

• We trade ideas for AAC methods, tools, and fidgets. (Seriously, few things are as great as watching a room full of autistic people discover a new favorite stim toy.)

• We squeak and flap our hands in solidarity when someone gets good news or when someone we love enters the room.

• We give each other advice on how to cope better with meltdowns, how to deal with those everyday difficulties, and how to tear down the barriers and inaccessibility we face.

• We work hard on making the world better for the autistic people who will come after us. Because we know it’s hard, and we want future autistic people to have better experiences than what we went through.

 

When I was at the Autism Campus Inclusion 2018 summer program , I got to witness firsthand how wonderful it is to be surrounded within autistic community. People using several different methods of communication, not feeling restricted by expectations of “passing” as neurotypical, and sitting there next to my fiancé and being in the company of so many amazing new friends?
It felt like I actually belonged somewhere for once, and I still sometimes get a little emotional because of how happy it felt.

We need people of all different kinds in order to make the world a better place, and that includes us autistics too. We each have our own individual role to play, no matter who we are. We don’t have to fit a mold or pretend to be neurotypical in order to be important.

I’ve realized this quite often in the autistic community. I love the friends I’ve made, the connections and bonds I’ve established with other autistic people all throughout the spectrum.

Each person has a different array of talents and difficulties, and every single autistic person I have ever met is valued and should be loved just as they are.

And that’s exactly why we do Autism Acceptance Month.

• autism acceptance month