Guys, I did a thing. A big thing (at least I think so!). I signed up for Advocacy Training!

Let me back up a little. 2 years ago, I started volunteering with an organization that does programming for people with developmental disabilities and their families. I’ve really enjoy it, I mostly work with kiddos, both neurodiverse and neurotypical, and it makes my day. Well, week, actually, but that’s semantics. But anyway, what I’m trying to say is that they’re pretty good people

So when I got an email about their advocacy training, I was immediately interested. I’ve been slowing trying to build up the skills I need not only to advocate for myself better, but my community too. And this email seemed really promising! They didn’t just advertise the training for families and volunteers, but for self advocacy too! Do you know how rare that is?  I was looking to sign up for a midwestern region Autism Conference, and they had registration for professionals, for educations, and for parents. Can you see whose registration they’re missing there? I’ll tell you- OURS.

But flyer didn’t do that. It said right there on the top that self advocates were being included and I’m fairly certain that’s how I managed to momentarily punch through my anxiety and hit the “submit registration” button. It helped that Jess could come too- you know, the buddy system and all.

So here I am Monday night, the anxiety about doing something new and having to out myself has been brewing for a few weeks now. My name isn’t on the sign in sheet, which isn’t a problem, it turns out, they just add me on. Then we go around the circle and do introductions- our names and why we’re here. I was a little preoccupied with worry to really care why anyone else is there. So we go clockwise, which means that Jess is going before me. This isn’t ideal, because it’s a lot easier for me introduce myself, and then have Jess go “I’m with them”. Or something like that. She usually makes it sound nicer. She’s got mad skills like that.

So Jess goes first, and says something along the lines of her “often acting as my voice”. Which is fairly accurate, given that she handles things like phone calls and making appointments. Plus all the times that I’m having auditory processing issues or am having a low verbal communication day. So  it wasn’t that what she was saying was wrong, it was the way it was interpreted.

Because the trainer assumed I was nonverbal

And he skipped me.

Guys, that felt like shit. It felt like he looked right through me, and assumed that I had nothing to contribute.

I froze, and Jess reacted (which is usually the way of things), and the guy said he was sorry, that he was confused about what Jess had said. Except that I’d had a conversation with him before the training started. So either he’s oblivious, or he made a wrong assumption and didn’t want to admit it.

So needless to say, I was pretty angry for the next hour or so. The trainer made sure to ask my opinion regularly, and I’m perfectly willing to admit that I was pretty snarky. And while my snark game is strong, I’m also incredibly non-confrontation, so I snagged Jess’s car keys and hid in the care while she talked to the guy.

She said that he felt bad, that he wanted to include me, that he wanted to hear my opinions. And I’m sure that he does, really.

I guess it’s like this: I’m always so worried about coming out of the autism closet, and usually, it goes. Worst that happens is some overly personal questions, or me having to pretend to be interested about someone’s cousin’s nephew who also has autism. Nothing really bad has ever happened. That’s why being treated like I wasn’t even there was so surprising. Being invisible to the person who’s supposed to teach me how to advocate for myself has dropped a ball full of contradictions in my chest and it’s wriggling with anxiety.

So I bet you could have guessed, but tl:dr I’m going back for the next session. Partially because I already committed to this, partially because I think this information will be really useful, and partially because I learned that neurotypical people aren’t like me when it comes to communication. They don’t plan ahead and sometimes it bites them in the ass, like what happened on Monday. I’ve learned that sometimes I need to give them a second chance, because that’s what I’d want them to do for me.

Stay tuned in November to see if the trainer wasted their second chance and had to face my wrath!


Autistic Bill of Rights Shareable Image

The Autistic Bill of Rights post that I made earlier has gone over so well, that I thought making an image of it would be a good idea.

These ten “amendments” cover what I see as the most important issues facing our community right now, although these all come from my experiences, which I recognize are not universal. I’d love to get more voices involved, and to put together a community approved Bill of Rights, so if that’s something you’re interested in. or would like to share with a wider audience, please contact me!

Autistic Bill of

Autistic Bill of Rights

If you’ve been through the American school system, you probably remember learning about the Bill of Rights. If you’re not from the US, or you slept through a decade of history classes, what we call the Bill of rights is just the first 10 Amendments to the Constitution. With the exception of the 10th Amendment, 1-9 cover the guaranteed rights of an individual person.

Now, we all know that when the writers pictured a “person”, they thought of a Christian, white, male who owed property, so clearly, the Bill is not as comprehensive as you’d think.

Some groups have used the official Bill as a template, writing things like The Patients Bill of Rights, and The Students Bill of rights, and I think that it’s about time that we made one for ourselves.

Note: Some of these cannot apply to young children, but they should take effect as soon as possible.

So here are what I think are the most important individual rights for Autistic People.


The Autistic Bill of Rights

I. No Autistic Individual shall have their experiences compared to others, whether they be Autistic or Allistic.

II. Autistic Individuals shall enjoy the right to communicate in ways that are natural for them, including but not limited to echolalia, stimming, and flapping.

III. The opinion or voice of no Allistic Individual should be given precedence above the voices and experiences of those of an Autistic Individual.

IV. The Autistic Community holds the right to choose the language which pertains to them, and when language is chosen, it shall be respected by all.

V. No Autistic Individual shall be denied access to tools that are necessary for their wellbeing, regardless of their ability to afford them.

VI. The right of the Autistic Individual to have the validity of their diagnoses respected, by strangers, family members, and professionals.

VII. A well-rounded option of therapies shall be made available, and Autistic people shall have the right to decide which, if any, they want to implement.

VIII. It is the natural right of an Autistic Individual to be treated as the age that they are, and not as the age that others perceive them as.

IX. The right of the people to be secure in the fact that their issues, including social, sensory, and food, shall be taken seriously and treated as such

X. No person shall, for any reason, disclose the diagnosis of an Autistic Individual without their consent.

These ten “amendments” cover what I see as the most important issues facing our community right now, although these all come from my experiences, which I recognize are not universal. I’d love to get more voices involved, and to put together a community approved Bill of Rights, so if that’s something you’re interested in. or would like to share with a wider audience, please contact me!

Being Represented

 Anyone who’s ever turned on their television has already been influenced by autism stereotypes. From Rain Man to Sheldon Cooper to Dr. House, for whatever reason, writers seem to pick the same few autism symptoms, magnify them, and then use them as their character’s only defining traits. Its infuriating. Because the majority of people know what little they know about autism from TV and movies, and if all the autistic characters they’re exposed to are basically the same, then it makes sense that they’ll assume that all autistic people are the same. That these fictional characters claim to represent all of us. And I don’t think I’m alone when I say that I’m not ok with the way that I’m being represented.

They say if you’ve met one autistic person, you’ve met one autistic person.

Stereotypes exist for a reason. It’s easier for our brains to group things together to make them easier to understand. I get that. I feel like I’m guilty of it sometimes too though. Am I stereotyping neurotypical people when I use the same scripts on all of them? When I run my Polite-Self Program, am I a bad person for not evaluating people individually? I hope not. I know that it’s impossible to never stereotype anyone, ever, and that some stereotypes are more harmful than others. I believe the majority of autistic stereotypes are harmful not only to autistic individuals and the autistic community, but to neurotypical people too, because by making assumptions about us, they miss out on interacting and connecting with us as individuals.

All this being said, I know I fit some autistic stereotypes. It doesn’t really bother me, unless people start using it to make assumptions about me. I definitely don’t like that. No one likes that.

So I guess the major question is, when does a common trait turn into a stereotype? I mean the DSM 5 A criteria requires deficits in social communication or interaction. No one’s really going to argue that autistic people have trouble with social stuff. Yet, we don’t appreciate the stereotype that all autistic people are bad at being social. Are socially awkward. Struggle with relationships. I know that I hate it when people mention that I’m good at conversion, so good, in fact, that they’d never have guessed I was autistic! I know enough social rules to know that I shouldn’t reply that that’s not a complement.

I think my problem with stereotypes like these are that people often pick an autism stereotype, and assign that as an autistic person’s main personality trait. I’d love to see an autistic character who had social deficits, but was good at mimicking neurotypical behavior. Watching them figure out scripts, constantly reminding themselves to make eye contact, and collapsing once they are home safe from the exhaustion of it all. That’s the sort of interpretation of stereotypes that interests me!

How about sarcasm? If you believe the media, not a single autistic person in this world understands it. And that is true for some autistic people. Sarcasm is hard because you have to realize the other person is saying the opposite of what they mean, fast enough to be able to pick up on the tone of voice that makes it sarcasm. Most people don’t have to think it out like that, but sarcasm is complicated! Interestingly I’ve also met autistic people like me, who struggle on some level interpreting sarcasm from others, but frequently use sarcasm themselves. Don’t worry, it confuses me too.

I think what I’m trying to say in all of this is that stereotypes suck. And when anyone uses stereotypes to represent a group of people, assumptions are made, feelings are hurt, and everyone loses out. I’m not trying to argue that all groups have something that equates to an (almost) universal experience. That’s what a group is. But I think that framing it as commonalities instead of absolutes helps people see similaries between themselves and others, and facilitates connections. Which, by the way, we can make, regardless of what the media has told you, I think that no matter what minority group a person belongs too, it should be a Right for all of us to be positively represented in our communities and in media.

So writers, directors, producers, get on it. Learn about autism from autistic people. Listen to what we want to see, and let us help you get it right. We’ve been waiting. We’re still waiting. We’re ready. Are you?