Why I (Still) Boycott Autism Speaks

(Note: This is the commentary from the link to my “Why I Boycott Autism Speaks” post. Something about the format of my blog made it really hard for me to read, though, so (under the assumption that some other people would have difficulty reading it also) I decided to put it in its own post.)

Since I posted about why I #BoycottAutismSpeaks, they have posted a “call for unity”–another attempt to silence the voices of the Actually Autistic people they claim to want to help.

I want to make an addendum to this post, however, because I mention my experiences with meltdowns, and I don’t want anyone to take what I say about my meltdowns as evidence that being nonverbal is The Worst Thing Ever. Being nonverbal sucks for me, but its not because there’s something inherently wrong with being nonverbal, and it shouldn’t be taken as a commentary on the experience of other autistic people. It sucks for me because most of the time, I’m not nonverbal. Verbal and written communication are my main methods of communication, and so far I haven’t been able to substitute written communication during the periods in which I am nonverbal.

When I become nonverbal during a meltdown, it’s scary. All of a sudden I can’t communicate, and the people around me are getting increasingly frustrated by that fact. That’s what’s so hard: not being able to communicate.

Communication seems to be a big thing for Autism Speaks–they talk about how autistic people are cut off from their parents/the world, and it seems clear they consider being nonverbal to be a mark of being “low functioning.” But there are plenty of ways for people who are nonverbal to get their thoughts and feelings across, even if finding one that works can be a difficult process, and even if those ways aren’t foolproof. The thing is, communication isn’t a one-person process. In order for autistic people, nonverbal or not, to communicate, you have to actually listen to us.

And if Autism Speaks really wants to help Autistic People, they need to start doing just that.

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Why I Boycott Autism Speaks

I meant to link to this on here when I originally posted it, but was somewhat distracted at the time due to circumstances in my personal life, and forgot.

Since I posted this, Autism Speaks has posted a “call for unity”–another attempt to silence the voices of the Actually Autistic people they claim to want to help. As a result, I felt it appropriate to add more–but formatting is annoying, and the text was hard to read, so it is now its own post.

Disabled Dragon

I wrote a thing a little while ago, which was supposed to be a short comment on my share of this “why I boycott Autism Speaks” post on a diary of a mom, but then it wasn’t short or really related to that particular post. Basically I accidentally essay-ed, which is a thing that happens.

Anyway, I said I’d post it as my own “boycott Autism Speaks” thing, but then life happened and spoons were none and anyway here are the words (slightly edited because Facebook took away my edit option for some reason?)

(cut because wow, that is rather long actually.)

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