How To Listen/Autism Parent Twitter Rant

Today I wrote a *rant on twitter. I feel like this is a huge milestone of sorts. Part of an inevitable progression that went something like this:

  1. Be informed that I’m Autistic & have it confirmed via official evaluation.
  2. Start a blog/twitter/FB page.
  3. Write about my own life & figuring stuff out through the lens of autism.
  4. Read all the autism books I can get my hands on about autism, autism history, autism theory, and primarily seek out writings by other Autistic people and parents.
  5. Begin thinking about broader autism-related topics outside of my own life.
  6. Begin writing about broader autism-related topics outside of my own life.
  7. Have my carefully thought-out positions rudely questioned by “autism parents” who apparently dislike that some of us grew up to have opinions that aren’t the same as their own.
  8. Be accused of being “too high functioning” to have relevant opinions.
  9. Repeat #8 until my patience runs out.
  10. Write a twitter rant because fuck all of this bullshit into the sun.

I have come to the conclusion (which now seems obvious) that if a parent of an Autistic child wants to listen to Autistic adults then they will approach us with respect. They will listen to our words, they will not make rude demands that might pressure us to violate our privacy, and if they disagree then they won’t claim we aren’t “Autistic enough” or similar nonsense.

Instead they might make the reasonable observation that our suggestion won’t work for their child because we all have different personalities and needs or they might have a different situation where our experiences won’t work. All of that is fine. We know that our suggestions aren’t going to help everyone and that’s not a problem. But we can usually give some insight into underlying issues that might help a parent better understand what their child is experiencing and then they can figure out what solution or support fits with their child’s personality and situation.

However, when a parent of an Autistic child wants to dismiss our lived experiences that we’ve so painstakingly put into words for them (because we care about their children and want to help and words are often hard for us), then they will often demand we violate our own privacy, the privacy of our children, and ignore our clear reminders that, hey, some of us have blogs that they could read if they really wanted to read more about our lives.

And if we do try to explain and maybe share more than we’d wanted or planned to, thus violating our own privacy in an effort to help their child, our neurosibling, we still get shot down with words. They always seem to have more words, while I have to use mine sparingly.

So, I’m done. I’ll post links, I’ll make suggestions, but I will not share details of my life in an effort to convince anyone that I’m “Autistic enough” but not “too Autistic” to have a voice in these conversations.

Nobody should have to do that.

To others who are feeling pressured by someone to share more than you’d like – just share what you’re comfortable with and if someone keeps pressuring you for more difficult details, you don’t have to give in to that pressure. The person probably is going to use those details to continue dismissing your effortful words with effortless words of their own.

It’s not a fair dialogue. Either they’ll listen or they won’t. It’s not our job to make it easier for them to listen – especially not past the point where it can compromise our own safety and privacy and/or that of our own children.

*I have been informed that some folks would rather read my twitter rant here than on twitter so here it is in text:

Since this topic (of functioning labels) has come up yet again, I was about to write this post, but discovered that I already had (yay!) –

“If I’ve left my house, I am going to present as though ‘high functioning.’ You will not see me on my bad days. You will not know about the worst times. You have no way of knowing how much I struggle on even those allegedly ‘high functioning’ days. How much it takes out of me…”

And, for fucks’ sake, how someone presents online doesn’t tell anyone anything about their actual life.

Sure we tend to not violate our own privacy (or that of our children) the way “autism warrior moms” do by giving every embarrassing detail often using real names, but that’s bc we value privacy & consent, not bc we (and our children) don’t struggle.

There are repercussions for Autistic people when we show our struggles. We are punished in various cruel ways when we don’t try and hide what are seen as our “failings” in real life. So, naturally, many of us are wary of not hiding.

This is not to even mention that many of us struggle to find words to describe the difficult experiences in the first place, especially if we’re newly figuring out what being Autistic means – the underlying everything of it all in my life.

So we’re somehow supposed to justify our Autisticness and prop it up with witty “autism mom”-like anecdotes that both violate our privacy AND take an immense amount of energy to access, then turn into coherent words that others can understand? Fuck that!

The goal, after all, is to dismiss the things we say that they don’t want to hear. Either we’re too Autistic or not enough Autistic or or or…. I’ve seen it time and time again. It’s not worth the energy and violation of privacy to just be dismissed yet again in the end.

And I’m certain that some folks are wondering, “Aria, how can you know other people’s intentions? Maybe they truly want to know what your life has been like!” Well, if that’s the case they can read my blog, now can’t they? I’ve been dismissed (and blocked) for suggesting that before too 😂

Also, the people who listen don’t really ever ask me to “prove” my Autisticness. So there’s a very clear pattern going both ways.

The people who are open to what we say interact completely differently than those who demand “proof” that we aren’t all brilliant and fully independent (as if anyone would give an adult autism diagnosis to someone who didn’t struggle significantly – it’s in the criteria, FFS).

Beyond that, many Autistic adults are unable to get official diagnoses and they are just as legitimately Autistic as those of us who were privileged enough to manage the process (financially, emotionally, etc) and/or who present more stereotypically.

2 thoughts on “How To Listen/Autism Parent Twitter Rant

  1. Indeed, if your “autisticness” doesn’t interfere with one or the more major life areas (cause clinically significant impairment in social, occupational, or other important areas of current functioning) you can’t even be diagnosed. Nor would an adult who isn’t experiencing impairment in their ability to function have a reason to seek a diagnosis. That attitude is so obviously ridiculous. I’ll never understand it.

    Liked by 2 people

  2. I think part of the reason why ASD is so misunderstood by the general public is that it is usually parents who are advocating for their children instead autistics speaking for themselves. I have tried hard to include our son in his own IEP meetings and Dr appointments. I also think that certain charities have misrepresented what it is really like to be autistic. They treat ASD like a curse that guarantees that you will never have a normal life. They make it sound like non verbal people have nothing to say. They also treat autistics like children regardless of their age or mentality. I think it is harmful to say things like “vaccine injured” or “environmentally damaged ” because it makes them seem broken. I like to think of it as different, not less. In my experience, parents don’t usually feel this way. The Dr acted like he was telling us our kid had terminal cancer. There are some challenges that come along with it, but it’s a part of my son’s personality and I wouldn’t change it if I could. I know that it’s frustrating to feel like no one is listening, but keep telling your story. It’s time for people on the spectrum to be heard and respected.


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s