so you have a kid with autism

kid with autism

Hello, reader.  My spouse Ming has a friend whose kid was recently diagnosed with autism.  To celebrate Ming’s birthday, we were on a hike in the forest.  I mentioned how I’d had my limit, and Ming’s friend told me that it impresses him, how I know myself and can express when I’ve had enough.  He brought up his kid with autism–I think he hopes his kid will learn those skills, so everyone can get along better.

I’ve worked hard to know my needs and how to express them.  It’s tricky because if I wait until I’m at my limit, I can no longer talk.  So I need to know myself well, predict my limit, and express it in a way that others can understand.  That involves a lot of work, including codeswitching to consider how the other possibly allistic persons communicate.

What’s most difficult is I need to be able to trust myself, that I’m safe enough to express anything at all.  There were years that I didn’t really talk.  And there were years that I didn’t much leave the house, because I had no faith that I could be ok in a non-home environment.  I was extremely scared of people because of violence I’d endured.

We’ve come a long way.  I thought I should write a post titled something like “so you have a kid with autism” as an open letter to Ming’s friend, telling him what I wish my parents had known, or just giving him some insight that may or may not apply to his kid and her situation.

so you have a kid with autism

Because the kid is recently diagnosed, I assume there’s been significant pain.  Kids are often diagnosed because there’s something they’re doing that other people would prefer they not do.  “Behavioral issues” is a way that the kid might be criticized.

I was never diagnosed as a kid because I was able to contort myself.  With great effort, I could behave in ways that were mostly non-objectionable.  I have a theory that girls are less diagnosed because boys who have a lot of testosterone can’t keep the lid on.  If girls are socially smarter, we can read a scene better and see what’s expected of us.

I could do what was expected of me much of the time, for my survival.  The price I paid was extreme anxiety, always feeling wrong, and almost never getting what I needed.

needs

Thank goodness my friend’s kid might have more of a chance of getting what she needs with a diagnosis of autism.  I hope she’ll have a therapist who’s smart and who can share some sensory and social OT to help the kid navigate a world not designed for her.

The kid has taken quite a hit, just by trying to get by in an allistic world.  Being told that she’s wrong and bad at school alone I’m guessing has damaged her greatly.  Hopefully a smart therapist can reframe the kid and her experiences, validating the pain of what she has endured.  Hopefully that will be healing for the kid to hear that she’s ok, just different, and nothing was ever wrong with her.

If she can learn how to love herself (or at least not waste a lot of energy hating herself) and let go of the shame that’s been heaped on her, the kid can move on from subsistence, to thriving on her terms.  And hopefully a smart therapist can give the kid some lifehacks for autism that will help too, validating her stimming, explaining about rest, exploring possible life paths that can work well considering the kid’s needs and strengths.

diagnosis is pathologizing

My fear is that diagnosis is pathologizing.  Being told, “You have this illness.  But you’ll be ok–we know what’s wrong with you now, so we can help you,” can sound scary.  Will the kid be forced into a round hole, as a square peg?  Or will she be valued on her terms and nurtured toward liberation?

In my opinion, autism is a valid variation of human.  That’s central to autistic liberation.  Having autism is more difficult in some ways, but we are valid and ok.  It’s more work to be very different in how we feel our senses and do social.  But the world doesn’t need more normal.  The world needs something better than that.

Please forgive my supercrip cliche when I mention that neurodivergent people can save the world.  I hope we can.  Recognizing how we are is a first step–then recognizing how we are as valid is another.

learn about autism from autistic people

I recommend my favorite instagrammer neurodivergent_lou for true brilliance stated in a clear way about autism.  I’ve learned so much about myself by following, and I’m grateful.  Countless behaviors I thought were quirks specific to me are shared characteristics of autistic people.  I had no idea that walking on tiptoes was an autistic trait, for example.  I did that a lot when I was a kid.

Probably that doesn’t sound significant, but being told I was bad and my needs didn’t matter (for decades) hurt me.  Little things like having a favorite spoon, loving fairy lights, and hating the sound of vacuum cleaners–I was taught that those things about me were weird or bad, not perfectly normal traits of autistic people.

play to her strengths

All people have strengths and weaknesses, and a trait can look like a strength in one environment, and like a weakness in another.  Building a place of happiness is important, where I’m unconditionally valid, feel safe, and can find the full extent of my strengths.

When I was a kid, I hid out because my needs didn’t matter in the common space.  In my own room, I created a quiet place where my needs mattered.  If my home had designated no-television hours in the living room, I would have felt ok spending time in the living room.  Noise and family anger were the biggest problem for me, when I was a kid.  I needed quiet peacefulness really bad.

questions

I would ask Ming’s friend what his kid’s strengths are, what her biggest needs are, what she most loves.  Does their home give her what she needs?  Not that everything should revolve around her.  But if her needs get met in more than one way, in more than one space, at least some of the time, she might have a better chance at a good life.  Feeling respected can go a long way.

What are you most proud of your kid for?  I hope there are many things, and she knows you’re proud of her.  She is not a fuck up–she’s a miracle of survival.  I hope she knows you believe that.

content warning: sexual violence

Disabled people are more abused and violenced than abled people.  So if I had a disabled kid, I would want to make sure she felt safe at home and could be at home as much as she needed.

When I was a teenager, I was not safe at home.  So I spent a lot of time being out, getting attached to people who used me, mostly for my body.  It was unfortunate–I endured sexual violence because I didn’t have a safe place to be.

Also, I wasn’t taught that my boundaries matter and my body is mine.  Being disabled means being jerked around a lot, and some basic lessons I needed weren’t learned.  Everywhere I went, I was treated like my needs were irrelevant.  So I had no idea that in personal relationships, what I need matters.

My relationship with Ming is the first happy romantic relationship I’ve ever had.  I met Ming when I was 34 years old.  I’m very grateful he is kind to me and we collaborate on true shared interdependent freedom.

blessings

I hope all the people with autistic kids can be happy knowing that they’re raising someone different in a world that badly needs difference, newness, and fresh ways of being.

I’m sorry it’s a lot of work being a parent, and I hope you can get the support you need to respect your kid on your kid’s terms while being good to yourself and other family members also.  Thank you for doing the sacred work of parenting.

recap

To recap!

  • Autism is a valid variation of human.
  • Since she was recently diagnosed, probably she’s hurting a lot.  Hopefully she can get help shedding shame.
  • Learning about autism from autistic people can help with reframing.
  • Consider playing to her strengths and making sure she knows you’re proud of her.
  • Having a respectful home can help her stay safe.
  • If you can treat her like her needs matter, she has a better chance of believing her needs matter and having happy relationships her whole life.

4 comments

  1. Hi, this is Ming’s friend with the recently diagnosed daughter. Thanks so much for this, and for sharing your awesome explorations! I homeschool her, which has helped a lot. I have friends whose autistic children struggle with the awkward and painful social hellscape of middle school and high school. Learning about autism from autistic people helps all of us with the reframing and enlarges our understanding. Thanks for being one of the reframers!
    Her needs matter a lot to us and we are navigating how to communicate and negotiate the tapestry of needs in family and society, so she can engage on her terms, while also treating others well. It is hard to treat others well when one is desperate and fearful, and her particular flavor of autism includes fearful perceptions of demands, even where they are are not demands. We’ve talked a bit about superpowers and how they often have at least two sides. In our gaming, I have introduced magic items with powers and detriments to model and metaphor that. So often, for anyone, our perceived flaws are integral parts of our greatest strengths, just in a different context. Good relationship are important to me (and almost everyone, really) and I particularly worry about that for her. Thank you, Laura-Marie, for your insights and for sharing them. I value you and your voice.

    1. hello, thank you for your comment. yes, our strengths being part of our weaknesses and weaknesses part of our strengths is a thing. yes, I’ve heard of demand avoidance and rejection sensitivity and hope your kid can have happy relationships. pls lmk if Ming and I would ever be welcome to game with your family.

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