I pride myself on being honest so I’m going to tell you the truth — right now, I am burnt out.
Posting your life on social media is inviting people into your life, your home. Only the rooms you’ve left unlocked, but still, your home.
Eight years of near-daily blogging has turned me paranoid. Before I click “post” on every text and photo, I’m inundated with thoughts of the many criticisms internet strangers are about to cast onto me and my life.
…Shit, I missed that dirt under Charlie’s fingernails.
…Oh god, Jude already wore this shirt once this week.
…Ugh, they’re gonna have a field day with those dirty dishes in the sink.
Other people’s voices, thought by my brain. Years of nitpicking, “constructive criticism,” and sometimes, outright abuse. Some comments are made in good faith — but odds are if one person’s sent their helpful suggestion, 58 others have too…and 50 of ‘em are not so nice.
There are some things I post that I know are controversial. Things that should never have been controversial in the first place.
But these things, they’re important to me. They’re important to me and the hundred thousand people who follow me exactly because I don’t shy away from speaking about them.
So, in that spirit, once again, here’s what I believe in that ActuallyAutistic people harass me for:
1 – Parents have every right to speak about autism, even if they’re not autistic. They, too, have a valuable perspective in the autism universe.
2- I don’t care if people use functioning labels or don’t use functioning labels. I care if you try to tell me how to speak about anything but you.
3- ABA isn’t perfect, but one bad therapist doesn’t make the entire field abusive. ABA has helped my son, Charlie, and many others, a lot.
4- Use the puzzle piece symbol. Or the infinity loop. The color blue. The color red. I don’t care.
5- Person-first or identity-first language? Everyone can choose for themself.
6- People are NOT all equally autistic — some are more severely affected than others.
7- Diagnoses should be made more accessible, especially for adults, but that doesn’t mean self-diagnosis is valid. Confirmation bias and the many other conditions with overlapping symptoms are just two reasons why.
I don’t follow the hive mind. Every autistic is an expert on their own autism, meaning that is whom they should feel free to speak about. No one can speak for the entire autistic community.
If your or your group’s advocacy relies on bullying people into silence, this means that your ideas don’t stand up on their own.
I deleted my Twitter account because it’s a petri-dish of radioactive bullies, but I’m not going anywhere. I’m not giving up because of the one obvious vocal minority.
If you’re here, thank you. I couldn’t do it without your support, private or public.
5 Comments
Frank Sterle Jr.
2023-03-19 at 9:33 PMI feel that general society, itself, could really use some proper educating on the realities of autism spectrum disorder.
Perhaps there should be an inclusion in standard high-school curriculum of child-development science that would also teach students (without being overly complicated) about the often-debilitating cerebral condition. It may also prevent some of the abuse of ASD students by their neurotypical peers, and perhaps even by some teachers.
If nothing else, the curriculum would offer students an idea/clue as to whether they themselves are emotionally/mentally compatible with the immense responsibility and strains of regular, non-ASD-child parenthood.
It would explain to students how, among other aspects of the condition, people with ASD (including those with higher functioning autism) are often deemed willfully ‘difficult’ and socially incongruent, when in fact such behavior is really not a choice. And how “camouflaging” or “masking,” terms used to describe ASD people pretending to naturally fit into a socially ‘normal’ environment, causes their already high anxiety and depression levels to further increase. Of course, this exacerbation is reflected in the disproportionately high rate of suicide among ASD people.
[As for my own autism-spectrum-disordered brain, I’m sometimes told, “But you’re so smart!” To this I somewhat agitatedly reply: “But for every ‘gift’ I have, there are a corresponding three or four deficits.” It’s crippling, and on multiple levels!]
There could also be childrearing/parenting instruction in regards to children born with ASD, with the rate of such births increasing. Low-functioning autism is already readily recognized and treated, but higher-functioning ASD cases are basically left to fend for themselves.
Reluctantly Autistic
2023-08-17 at 5:51 PMCompletely agree with you and this article. I hate the Actually Autistic mob, some of whom don’t even have a diagnosis and may not even have the disorder. I can relate to the thing about every “gift” having three downsides. I’m also uncomfortable with the idea that people cling to this notion that you can only be gifted at something because you have autism. It feeds into the whole “difference not disability” nonsense and if I could cure my autism, I would in a heartbeat! I’m high functioning, late diagnosed and accessing support is a nightmare! There needs to be a lot of education in schools and elsewhere to counter all of the social media nonsense about there being no such thing as “severe autism.” To the author of this article, if you are living with autistic kids day in and out then yes, you are very much allowed to comment about autism and should tell those bullies to shove it.
Kristi
2023-03-22 at 8:21 PMWell said and I couldn’t agree with you more!
Jenn
2023-04-28 at 5:42 PMThank you for taking the time to share yours and your family’s story. It has been the biggest encouragement to me; especially as I raise my son, who is autistic. I’ve learned so much. Still learning. Still wanting to learn. Your blog has been a true blessing to me. Keep at it!
anonymous
2024-01-31 at 6:26 AM#ActuallyAutistic?
More like #ActuallyTwoFacedBackstabbingLyingLittleManipulators