If you’re caught up with my two-part movie review, thank you. I left one huge train of thought out because it was too enormous (symbolically) to just toss out without doing a deep dive.

To be clear, the movie was saying that the search for an autism cure is somewhat understandable, but the means and actual ableism are unethical. And, as the audience, we can agree with that.

What’s missing, however, is a chance to look at the basic quandary of using psychiatric medication to mitigate certain behaviors in autistic people. The moral dilemma shifts with the age of the person.

For one thing, kids like ours cannot meaningfully consent to being medicated with such high amp drugs. Most of the informational literature also warns that the side effects are not rare.

I struggled with this issue for a WHILE when A was younger. Conversations with my therapist come to mind:

Me: I’m worried we are doing this for our own convenience.

Him: Is that so bad? You need sleep. What will happen to him if you don’t make it?

Me: So we sacrifice his natural state of being for our own?

Both of us: heavy sigh.

There was no simple answer. We just had to try out meds on A. And there was the constant adjusting we had to do because he cannot tell us when it’s not helping.

I didn’t realize that that was not as difficult as the decisions we had to make for him when he became older. Also, was it him? Or was it teachers who expected medicated young men in their special ed classrooms?

This round of meds caused a sharp appetite increase, weight gain, and A’s whole face structure and appearance changed. He also acted like he was tranquilized. I hated it, and cried a lot. His teacher was all praises, and I still hate her with all my heart.

I know I’m probably wrong, and some part of my response is me being a foolish mother. But I don’t care. Unless you’ve seen a loved one’s whole countenance and demeanor change because of psychiatric meds, you don’t know how painful this is. And he doesn’t get to say “Okay, yes I feel better, I am grateful,” or whatever he could say to make my anguish go away.

Buddhi in the movie simply went from nothing but therapeutic intervention to drastic “cure all” drug. So I feel like audiences didn’t get to see what the realistic, daily decision making is like for parents. How it is still terrible to have this much power over someone else’s life, and to know that you have to say it; you have to indicate a level of acquiescence to the medication journey so that the psychiatrist or neurologist knows the path to set your kid on. So your hand, as a parent, is all over that choice. You are the ones who changed the story of your kid’s life, and you don’t get to sit down with them in their adulthood and say “Here is what was going on, here were the options before us, and this is why we chose what we did for you.”

Here, no one asks for accountability, so you have to live with it inside your heart, and it alters you just as much as the meds are altering your kid’s brain and body.

I am not even saying meds are bad. Some autistic people self injure to the point of requiring eye surgeries and etc. We are talking about a level of impulsivity that might be debilitating or life threatening. So if I must choose, of course I choose the path which gives A the best chance at living in good health.

I just wonder: are we medicating these kids because society won’t tolerate sharing some of the responsibility? Behind our need to get sleep is the fact that no one is coming to save parents like us. We are alone. That is a fact.

The other night, I had a dream that my husband and I were hosting a wedding, and everyone liked a massage chair we owned. Except that it had a hot water feature which we couldn’t remember how to turn off, so water was soaking into the carpets, and it even ran into a pantry and cooked the rice at the bottom of the cupboard. We kept asking people to help, but they were partying.

As I talked about it in therapy, I saw it as symbolic of how we cannot join anymore in the wider world of social life, where carpets stay mold free, and people are able to overlook flooding. We are nourishing ourselves (cooking rice) with the dregs of what passes as self care, and people often try to “teach” us to have fun because we seem joyless to them, but we are asking for help, and they don’t want to hear it.

I sometimes listen to people talking—what do you do; have you been to that winery—and I want to take a huge book and drop it on the floor with a thud and yell that I cannot stand acting like this chitter chatter isn’t killing my spirit.

We live in a totally different world, and no one is coming to save us. I think the movie could have just said that and it would have been powerful beyond belief.

Radha.