You aren’t my friend if you Light it Up Blue

Today is World Autism Day. Today, many people have participated in “Light it Up Blue”. I am not one of them.

Please do not misunderstand. I am not trying to ignore autism. I am not trying to say acknowledgment of autism and the move toward greater awareness is a bad thing.

But you are not my friend if you participate KNOWINGLY in an event that was created by an organization who portrays autistic people as burdens, who for a long time were very anti-vaccine in their rhetoric, who have filmed a then-member of their board talking about her thoughts about killing her autistic child and herself (but didn’t because her NT child needed her), and who silences autistic people, removing the very mention of us from our own stories, because clearly, portraying us as capable would ruin the image they are attempting to portray of us. This organization, of course, is Autism Speaks. If you don’t know the detailed reasons why they do not speak for many autistic people, please read my link here.

Today isn’t a very pleasant day for me. I was, thankfully, spared from much of the Light it Up Blue hoopla. I apparently do well in choosing my Facebook friends, for the most part. But I had a few moments that brought me to unwelcome tears. One of those was a longtime friend of mine (not a very close friend, but still a friend) posting information for another friend about curing autism with essential oils and how antidepressants in pregnancy cause autism. I was hurt, amd how do you explain that? How do you explain “this is hurtful because you believe my neurotype is inferior and needs to be fixed rather an accepted” when you think it should be self explanatory?

The truth of the matter is, I shouldn’t have to. I shouldn’t have to explain that, and anyone who brushes me off as an angry autistic, well, yes, you’re right. But it gets tiring defending my right to exist and be treated like a human being. This goes for many other forms of oppression, too, so please don’t believe that I think this is exclusive to autism. It absolutely is not.

If I were to write a letter to the world about what World Autism day is about for me, this is what I would say.

We have always been here among you. Please do not fear the increase in diagnoses because of advances in medical care. We are not scary, and we are different, but we are no less worthy of love and understanding. We deserve to exist and to be accepted for who we are. We need access to medical care of our choosing. We need a voice that belongs to us, not our parents, caretakers, teachers or therapists. Listen to us. We may not all speak your language. We aren’t a monolith. Pay attention. And learn.

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We are not all on the same side

I’m going to apologize ahead of time, because I know this is probably going to sound disjointed. I hope it make sense in the end.

Also, quick definition time. Allistic = not autistic. Please don’t confuse this with neurotypical/NT, which means non-neurodivergent at all. Some common neurodivergences that aren’t autism are depression, bipolar, ADHD, borderline personality disorder. If it’s in the DSM, it’s probably a neurodivergence. Allistic is specific to the autism community and is an easy way to say not autistic.

I have been an active part of the autism community online for four years if you count my time as a parent, and about a year and a half if you count my time as an autistic person. I keep hearing a few phrases that bother me, and I need to explore them here. They are the following:

“We all want the same things”, “we are on the same side”, “we all want what’s best for our kids” and “but my kid isn’t like you.”

If you say any of these phrases as a way to assert your role as a parent of an autistic person as equally important as an autistic person, well, to put it mildly, this raises my hackles.

“We all want the same things” makes me believe that you don’t listen to autistics often, even if you interact with us. Also, we do not all want the same things. Even among autistic people, there is a difference. But saying parents want the same thing as autistic people is ridiculous. Many parents want a cure. Many parents want easier ways to deal with us, to make their lives easier. Many parents want us to behave in a less autistic way. Many parents want to forever infantilize autistic people through guardianship and institutionalizing. Not some, not most, not all. But many.

“We all want what’s best for our kids” is something I hear a lot. That is a matter of perspective, because what an allistic parent wants for their kids may not be what’s best. There are all sorts of ideas about what is important for an autistic child, but rarely do parents consult autistic adults. Instead, they talk to teachers and therapists and pediatricians. Where are autistic voices in that?

Another thing I’ve seen is “this infighting is terrible!” It isn’t infighting when allistics fight against autistics. While not the same form of oppression, it is like a parent of an LGBT+ person claiming they have as much of a voice in the LGBT+ community as the LGBT+ person themselves. In what other group besides developmentally disabled people is this acceptable? It is infighting when autistic people fight against each other. And it is terrible when an autistic person is telling you how they feel about x, y, z autism topic and you shut them down, and “not my child” them. It is demeaning for you to shut down the argument of an adult autistic because you assume they are “too high functioning” to count or that your child could never be like that. What you see when you interact with me online is very different from what you’d see if you spoke with me in person. In addition, I will be turning 32 early this year. I am a much different person than I was at 7, 17, and even 27. I have grown up, and I’ve adapted.

Not every person you encounter who is on the spectrum will resemble your child. This is, in part, specifically if your child is nonverbal, you will see autism through your eyes, not theirs. If your child were to encounter someone who is autistic, yes, even an adult, they may see “wow, this person is like me, and maybe because they exist and they’ve been through what I have, I might be able to do those things, too.” Despite your protestations to the contrary, they may see a bit of themselves in me. You never know.

I may not be like your child. I do not neatly fit into your low or high functioning categories, nor into many of your other stereotypes regarding autistic people (which seem to change by the hour, the more is understood about autism). Your ideas about who I am is based on your own idea of autism. I’ve had people diminish my struggles and say they didn’t think I was really autistic (because I’m not Rain Man, I guess?) until I was slamming my palms over my ears, rocking and crying because someone decided to play a maraca next to my ear. And even then, they didn’t immediately think “autism” when that happened.

I’ve never read a story about someone like me, except through the blogs of other autistic people. Even those books that address people who are like me tend to forget that LGBT+ autistics exist, that POC autistics exist, that intellectually disabled autistics exist, and so do gifted autistics. There are autistics who always look autistic, and those who can pass for allistic/NT. I fall somewhere in the middle, where people see me as odd/weird, but because their ideas about autism are skewed, they don’t think “autistic” until after I tell them, and maybe not even then.

The point is, we are all different. Assuming we must all fit some ever changing stereotype of what it is to
be considered “autistic enough” to comment on autism-related topics and if we aren’t (according to outsiders), then it’s acceptable for parents to speak over us, to tell us we don’t count is ridiculous, insulting and invalidating.