Crusade against hate

On the bus I am screamed at for trying to cope. For doing the things that I need to do. People, all around me, grouping together, in a mob against me, for being different.

This is the autism awareness we have.

I am told, time after time "you are not autistic", because I don't match there stereotypes. Because I can speak, or type (because it might be online). Because my communication is clear, or because they can relate to things which I say. I cannot be the kid rocking in a corner, hands on their ears, humming, to keep out the horrors of the surroundings, no matter if that is something I will do.

This is the autism awareness we have.

"Autistic adults don't matter" I hear, in those words. I am told my words don't matter, that people like me do not deserve help. I am told it only matters if we do things for the children, and those who are over 18 can be on their own. We are not part of the picture.

This is the autism awareness we have

This is the reality of our lives as it is. The hatred thrown at us. The denials of our lives. This is the reality of the fighting for acceptance - that every day, its meeting more people who've been misinformed and cannot believe that our words about ourselves are the truth.

Asking for help, is a quest to find acceptance. Traveling in public, a question of whether or not challenges will come up. Our words are not valued, our stories not told. We share, but we are overwhelmed, denied, and pushed out, by those who want autism to mean other things.

And still, we go out there, we face the world. Still we tell our stories. Still we go and do what we need to do, to make things better for ourselves. Still, we work to make things better for those who are like us. Because that's what needs to be done.

Even when it makes it harder right now, we work for understanding. Even when it is painful, we work for acceptance. Even when it is a struggle, we work against the hatred that right now, is the primary message available about autism.

Success

I sit at a table, working playing a game with students. Next to me a conversation goes on, which I desperately want to join into, and can't, because I'm working with their classmates. Instead, I busy myself listening, enjoying what I hear. Twelve and thirteen year olds discussing neurodiversity and what it means to be autistic. Preteens and teens discussing their own way of being - my way of being - and the idea of acceptance.

Another time, I sit at the same table, and a student fights within himself - overwhelmed by the noises of the classroom, but afraid of acknowledging his impairments. I'm there with him, sharing his disorder, but already accepting my own, and someone who he views as someone worth looking up to. I am open about my ear muffs in my backpack, and about how much more noise it would take for me to go through the effort of pulling them out even buried so deep. That day self-care and self-acceptance wins, because of acceptance of me, and he gets his own ear muffs to protect himself from the sensory onslaught he was feeling.

Teachers requesting where I got my neurodiversity t-shirt, aides asking about the problems of stim suppression, people turning to me as someone knowledgeable about autism and asking me questions. Most importantly, students treating me as a mentor rather than any other sort of adult.

Success - that is what I get. I make a difference in people's lives, because of my autism, and because I know who I am. I am not afraid, I know I'm impaired, I accept the word "disability", and what I get for it, is my success.

Everyone's success is their own. No two people do the same thing, no two people share the same traits, disabled or not, autistic or not. No two people share the exact same goals. What I manage though, is managing to show people that they are worthy, by showing them myself. I manage to show them how to accept themselves, by showing them that it isn't a scary place of lesser being and inability, it is a place of acknowledgement of impairments, and a place of finding themselves and their own goals. I manage to show them the worth of everyone, slowly, by showing them that impairments don't define the worth of a person, even when they begin afraid of impairments doing so.

My success is helping people through that process, speeding it up, making it not one to be afraid of. My success is making other adults start to see bits and pieces, and what that might mean in education. My success is taking being myself and spreading the idea that you shouldn't be afraid of someone like me, and it working. My success is seeing steps, someone asking me for help for more ways to take care of themselves, someone talking more openly about who they are, someone turning and talking to others about how autism isn't a bad thing.

These aren't things I could do without being autistic. I use my autism productively, because it is who I am. I need to help and share. I need to make people see the beauty of math, see that I'm not a horrible person because I am autistic, need to make people see how much they are, no matter their impairments. I need to take my self-acceptance and project it onto others, until they accept me too, until they accept themselves too, until things become better.

Because in too many cases the children are sitting their not understanding who they are, because nobody tells them. The parents fear because nobody tells them. The people around haven't heard any words about autism besides "autism speaks". There isn't any ideas of what or who we are, except the idea of fear. I am not afraid of who I am, I see no reason to fear me, even if sometimes I need a little help.

So, I want to take this, and tell people. Take this and go to the children, and instead of the therapy, just play games working on math skills and while doing that talk to them as a peer and mentor. Letting them know who I am, being open about my diagnosis, being open about my impairments and about what I do because of them. Answering questions about how I cope, and about what my quirks are. Tricking them into learning skills that I think are necessary to learn, and I think will help them, focusing on problem solving skills, and critical thinking skills, and various types of reasoning.

And that's what I do, I share, I teach, I show people and they get to know too. They get to see too the beauty, they get to see too, who they really are - someone who isn't to be feared.

The harm of us vs them; to @SesameWorkshop

When I was a child, I wasn't taught about autism. It wasn't a topic spoken about. Not hidden, but not in the public view either.

When I was 13 or so, I was told, that I probably had Asperger's. I wasn't told much, but I was told some. I was given enough that I could research online.

What ended up happening, was that I went into neurodiversity. This was a different form of being. There was nothing wrong with me. Some people were like this, and other's weren't and this was fine. But what also ended up happening, was that I said I wasn't disabled, denied my impairments, and pushed away any relation with autism. I wasn't like those people. I couldn't see the association, the relationship, between me and the people who couldn't speak for years, if ever.

Eventually, as I grew up, I was able to learn that I am impaired. I was able to learn what my impairments actually are, and I was able to see, wait, this is how I am autistic. And I was able to understand how I'm autistic, someone with a speech delay is autistic, someone with partial speech is autistic, and someone who is nonverbal is autistic. I was able to understand how the traits vary, and yet are so similar, and relate when I read writing by a wide range of people. At this point, its easier for me to relate to someone who's nonverbal than someone who's where I was a decade ago.

But, while I'm telling this story, you might wonder, why this is relevant to someone like Sesame Street. This separation. This us vs. them, is harmful, to everyone involved. I didn't have guidance to learn this. I needed to learn it on my own. I needed to learn how I relate to others, while the information I was getting was pushing me in the other direction. The people who cannot speak or take care of themselves are different than those who can and they are different than the "normal" neurotypical people. That's the overarching view of autism information being shared.

This us vs. them, ends up leaving people without help. It ended up leaving me without help for years, and I'm struggling to get it now. The years of me thinking I was unimpaired, only "different", I knew, and yet didn't do many things which would have helped because I was separate. I didn't need help like those people in my mind. This left me farther behind when I realized what was actually going on. Now, other's view me in diagnostic stereotypes, because of the us vs them fight going on around me of the same, again, denying me help.

It ends up with people getting abused, mistreated, and fighting a world of stigma. People understandably become unwilling and unable to turn to others, when others are right there. Other's struggle along on their own, never managing half of what they could do if anyone would treat them the same as the others around them. It leaves autism, in a world of its own.

Instead of saying autism, all of autism, is a thing, which occurs, a thing which people do need help for, and a thing which isn't a tragedy of burden, it leaves, us, the autistic people. And yes, we're both autistic and people behind.

There's one group, at the center of all of this. There's one group, which leads the charge of how autism is a burden to all the families, to the world! And how it doesn't matter if we're trampling autistic people in the charge. There's one group which says that if you're able to speak, you're separate. That groups people, and in doing so takes the voices away from members of all groups.

You've probably heard lists of what's wrong with Autism Speaks. The list is long: dehumanizing; spending little money actually on helping families of autistic people (4%); stealing writing from autistic people; the "I am autism" video; not having one autistic member of the board of directors; things like someone in leadership talking about the only thing stopping her from driving off a bridge with her autistic daughter was her neurotypical daughter at home on video; generally denying anything about adults with autism, or our ability to do anything successfully...

These all cause pain directly. They also build a culture of fear, hatred, and fighting. People are afraid of those of us who are autistic. Why wouldn't they be, when they're taught that the only thing we are are burdens who are unable to ever contribute to society and who meltdown at the drop of a pin. And people are becoming more and more aware of autism than when I was a child, and not in positive ways. Now autism is a bad thing. It's a bad word. It's an insult.

All around autism; there's hostility and fear, in ways that we're needing to unite against in order to try to overcome Autism Speaks. We're needing to try to teach that every person deserves to live. We're needing to try to teach that every person deserves to be able to be treated with respect. We're needing to try to teach, that every person. Everyone, deserves a chance.

Teaching about autism is a notable goal. There are many reasons to want to teach children about autism, from classmates growing up, to seeing behaviors that would be pointed out in public. However, teaching about autism should be done in a method that promotes equality. We deserve our voices, whether spoken, typed, or pointed.

Many good things are taught through children's television. This could be one. Autism Speaks, while the biggest name in autism, is one who isn't there for those who are autistic, and is that toxic.

Please Sesame Street, do this another way.

Written for the "#EducateSesame" flashblog

Stop combating me, start helping me make it better for the children of today

I'm denied help, even if the help is even available. I want to work, but jobs aren't open to dealing with someone like me. I struggle along, my senses giving me false data, but the therapy to help me learn how to deal with this false data through adaptive tech, learning other methods, and training my body, is denied by insurance repetitively.

Bus drivers tell me how I can't be disabled when I use my disability pass, no matter how much my symptoms are actually affecting me. In public, people scream at me, telling me how I'm lying for trying to cope, instead of something as simple as taking a seat on the bus when it would give me a migraine. In multiple, completely different, scenarios, I'm told speech is the only way to deal with things, even when that's completely wrong.

I'm screamed at, not allowed to get things done, denied help, being taught that I'm innately wrong, and told that it's for my own good.

You're not combating autism and you're not doing a thing to make it better for me. You're part of this. You're part of this society, who says that its for my own good to get denied the help to actually learn how to live as an autistic person rather than be stuck as a burden while screaming about how worthless we are because we're burdens. Autistic people shouldn't exist? Right? That's what combating autism is? Telling us how we shouldn't exist?

Stop it. Stop combating me. Stop combating all of us. Fix it. Help us. We deserve help. We're other people here who are being pushed around and abused at an absurd rate, which I'm not even comfortable looking up anymore, because its so high, because what autistic therapy is frequency compliancy training, along with the rest of the world training us that we're worthless and need to follow them. Because we're not good enough how we are.

Instead of putting less than 2.5% of the funding into research on services. Actually pay attention to services. Actually pay attention how to help us live as autistic people. Because that's who we are. That's how we live. We won't swap to being neurotypical. Going through and figuring out how do we live as autistic people, through things like occupational therapy, things like AAC apps, and things like PCAs are what we're needing. Not stim suppression. Help us.

Help us figure out employment and if we want it higher education. It's not necessary for us to be worth it, but really, it'd be better for everyone else too, then, because we can be great employees. We're just stuck without employment, even when we want it.

Help us learn how to say no. And help us have people listen.

Help us have society listen.

Help us say that combating autism isn't getting rid of it. It's helping us live. Without attacks every day.

Stop combating me. Start combating the attacks. And instead, make it so that the world the autistic children currently live in isn't such that it will be such a hostile place when they grow up. Instead, its not somewhere where they struggle every day in order to get through the day because of everyone and everything around them. Make it better for them. Because if we work on this, it will be better for them.

Isn't that what combating autism is about? Making the world better for the autistic children of today?

What is autism?

What is autism?

Living a life that others don't understand. Being told that you aren't "really disabled" because of being verbal. And at the same time being told that you are not good enough, that you need to be normal, that you need to act how they do. Struggling alone. Doing the best you can to be the best you can. And not being acknowledged, because people want something else.

What is autism?

Autism is being able to identify individual learning styles quickly because we cannot understanding people intuitively, and need to analyse every thing actively. Learning styles are no different than attempting to figure out anything else about the person.

Autism is needing to say that you can't do something, and not knowing when to, or how to, and if it gets through that to actually saying something, then not actually being listened to.

Autism is overwhelming joy with something as simple as a toy made for a 2 year old. Simplicity is not a thing to overlook or look down on.

Autism is not understanding the world around you, and needing to make sense of it; not always being aware of everything, or being aware of too much.

Autism is learning about things in depth, taking in all the information about subjects and being able to call it up any time its relevant.

Autism is being told that we don't live past 18. That autism is only for children. That we don't exist.

Autism is saying that typing is communication, handflapping is communication, and we'll fix that "we don't exist", we'll find our own way into the world, because we need to.

What is autism?

Simply us. And we're not broken.

Written for the "This is autism" flashblog