#autism self advocacy

[autiebiographical]

Day 10 of Auctober!

There is a growing number of autistic self advocates online because we learned that if we don't advocate for ourselves no one will. Autistic people should be at the centre of autistic advocacy!

[canenotabeltofunction]

Some people will not like this.

Autistic people are the authority on how to support autistic people- not parents, not ABA therapists- autistic people

Acting like you know what is best for autistic people as a whole and speaking over autistic adults who try to help parents learn how they can support their kids is not advocating for your child.

Instead of supporting organizations like Autism Speaks try looking at places like the Autistic Self Advocacy Network (https://autisticadvocacy.org)

Autistic people regardless of their level of support needs deserve to be treated with respect and given the resources to communicate their needs themselves as best as possible. Sometimes that requires extra help from caregivers- it does not make you able to speak for the community

When autistic adults say something is more harmful than helpful it is not your place to tell us that we are wrong. :)

[cl0udpup]

Feeling seen and encouraged

Yesterday on Twitter, I got a ton of interaction on my post explaining the process I've been going through of researching autism, and trying to determine if it fits for me. The responses were overwhelmingly positive.

I felt validated, accepted, understood, believed. People were SO kind, warm, welcoming, encouraging, non-judgmental. It filled me with a rare kind of joy, like butterflies in my stomach, electric energy in my chest, lots of smiles, tears in my eyes.

I think this is the feeling of love. I can think of feeling this way when totally enamored with someone and sharing affection, as well as how I feel when bonding with a dog. It is the happy tears emoji.

I spent much of the day continuing reading, researching, and came across this survey about autism, completed mostly by autistic people, as well as in smaller numbers, their parents/caregivers, professionals who work with autists, and some "neutral"/non-autism-connection people.

Reading this survey was so intense. I feel like I've spent my entire life feeling alienated, different, on the fringes of society, but in this sample of people, my feelings and experiences aligned with the majority. I cannot put into words how intense this level of validation is. It was so overwhelming I practically felt intoxicated, like reality was pulsing, and a warm hug of energy and understanding surrounded me.

I wanted to document how I feel in this moment, as I can have a hard time remembering things if I don't write it down, and this feels important.

I will make two additional posts, detailing the survey, and the thread. For now, thank you for reading and supporting me. It means the world.

[my-autism-adhd-blog]

Self Advocacy Scripts I Rely on as an Autistic Person…

Neurodivergent_lou

[innermost-memoirs]

Self-diagnosis of autism is valid. Why is that?

The mental healthcare system, as well as the medical system in general, is still entrenched in misogyny, racism, and classism.

Women and gender minorities face difficulty and often aren't taken seriously whenever they seek care or voice health concerns. Women are more likely to be diagnosed with BPD, Bipolar disorder, depression, and/or anxiety before ever being considered for autism. Diagnoses like autism and ADHD are often seen as "boys' disorders".

People of color face similar difficulties, with many doctors still believing in racist medical myths and stereotypes.

As for classism, many low-income people and those in poor communities simply don't have the means to seek medical care or get tested for autism. Testing services may also be unavailable from a geographic standpoint, or practices may be grossly outdated (and biased), which leads to inaccurate results.

Getting late diagnosed is a whole other battle, as now you have to find a doctor willing to even look at you; most resources for Autistic people are aimed at children.

With all that being said, if someone looks into autism, does their research, weighs it against their lived experience and difficulties, and determines that they may well be Autistic... I believe them. And you should too.

"But what if they aren't REALLY Autistic? They're taking validity away from actual disabled people!"

For one, let's be honest: many of us disabled people aren't validated by society even if we do have a crisp piece of paper that says we've been medically diagnosed. Anyone who discredits one disabled person is willing to discredit the rest of us, too. I guarantee a lot of people look at me and see me as a "fake" Autistic person for XYZ reason, because I don't fit their image of what an Autistic person should be like.

For two, if someone finds community amongst Autistic people and gets information and resources that help them, what's wrong with that? Would you prefer that they go back to feeling lonely and miserable, just so you can feel vindicated and smug?

Let's keep in mind that if you're late diagnosed, you didn't go from "not being Autistic" to suddenly "being Autistic". You were always Autistic and always needed accommodations, now you just have a doctor that says so. Getting a late diagnosis, being misdiagnosed, or not getting any care at all comes with its own unique challenges and pain.

These people should not be shut out from the community just because their autism didn't fit a certain narrative, they were born with the "wrong" set of genitalia, or their parents were too poor (or uninformed) to get them screened.

[loud-sound]

disabled people: i don't wanna "use the disability card" to miss class today...

also disabled people: semi-conscious on the floor

[ontheoutside-lookingin]

Clinical misdiagnosis is more common than self misdiagnosis. Just for the record, in case anyone is still skeptical of self diagnosis :) it’s not up for debate btw

[thecommunalfoolboy]

Say it with me now

DIAGNOSIS IS A PRIVILEGE

[snakeautistic]

I’m really bad at advocating for myself because I find my ability to communicate is extremely limited under stress. It’s frustrating because I will be struggling overstimulation or overwhelm that could be eased by simply going somewhere different, or asking a clarifying question, but while in this state I do not have the ability to communicate with people around me. Part of this is just the social effort of it all, but it also has to do with the shame I feel for asking for ‘special treatment’ or bothering people.

An example of this was recently when I was retaking my math test and the room was extremely noisy, making it hard to focus. Now, due to my accommodations I’m sure I would have been allowed to ask to be moved somewhere quieter, but at that time I wasn’t able to muster up the social energy communicate that. Another example is when I sometimes unfortunately break down in class, and begin to sob. I would feel a lot better if I went to the bathroom to cool down, but I am not in the state to communicate this and ask to leave , so I wait until an adult takes pity on me and tells me directly I should probably go cool off.

[bookquotesfrombooks]

“First the world says not to let autism ‘define you.’ Now, all of [a] sudden, when I need help, I have to prove to people that I am autistic.”

Kayla Smith

“I Wish I Wasn’t So Hard On Myself Back Then”

Published in Sincerly, Your Autistic Child

[pollen]

:0

[daughterofmalkavia]

[schar-aac]

"I am not a puzzle piece."

Image: the blue puzzle piece logo of the hate group Autism Speaks with a big red "X" in front of it, partially covering it.

[chronicsymptomsyndrome]

I really need to tell my aunt I’m autistic. I started a co-counseling class with her I really like the other two women in the class. I’m notably the youngest (all my aunts generation) but we are all very open minded liberal activist love the arts being creative plants astrology etc etc. I would put big money on all four of us being some type of neurodivergent.

Anyway every session I filter myself alluding to being autistic and I need to stop because the point is not to filter. It’s time. I don’t know if I would rather do it in a season (defined roles which I love but leaves me wondering what she’s thinking the whole time) or in regular conversation (no defined roles but I get to hear genuine thoughts and questions.) Also do I want to tell just my aunt initially or all three of them at once like ripping off a bandaid? Also do I bring up adhd? Which I am clinically diagnosed with? Should I start from square 1 w the whole backstory of how I got here, or dive right in the deep end and go back from there?

I think the part I’m most anxious about is explaining the concept of self diagnosis. I hate defending my diagnosis. I hate adding the caveat “if a doctor labeled me allistic I would laugh in their face and make fun of their career choice.” I hate having to explain how common it is to be overlook/dismissed because you’re a girl and you made eye contact or smiled or sat still or communicated adequately or masked too much

I’m certain she’ll be outright positive and supportive I’m just worried she might miss the mark in doing so. I’m worried she’ll try to be supportive by saying something like “nooo I think you’re being too hard on yourself give yourself a little credit” or “so cool that it’s hardly noticeable at least” or “don’t worry that doesn’t make you lesser than, you’re just like everyone else!” Or any of that well meaning toxic positivity crap that allistics always rely on

Anyway if any self diagnosed autistics have tips from their own experiences explaining to family/whoever, I’d love to hear. Either way thanks for reading this far if you did. Wish me luck I guess 🥸

[autville]

welcome autville, a community of autism acceptance! no need to mask your autism traits around these parts; we’re all autistic here! self-diagnosed and questioning folks are always welcome.

stay tuned and follow along for community bulletins and reports about general goings-on.

see ya around town!

[littleautiebird]

How did I realize my autism?

Its funny, in my youth, one thing I was worried so much about was making sure I acted “normal” so that no one would assume I was autistic (this being before I knew anything about autism or truly suspected it of myself.)

It wasn’t until one day as I was pet sitting (at age 23) that made me look into the idea.

I crawled into bed and the texture of the sheets physically made my teeth hurt. I knew it seemed silly, so I texted my best friend and asked her if she ever experiences anything like that, to which she of course said no and jokingly pointed out that its an autistic trait. I responded “wait though, I’ve kind of wondered if I am autistic multiple times in my life before…” She then encouraged me to look into it if I really wondered.

That was the start of it. I went on social media, websites, found books and podcasts, and I started my personal research. I read so many things that week in all my free time, spending many late nights just reading and taking notes. I probably filled about half my journal with these thoughts and observations.

I went through many phases of imposter syndrome, and still do. But I started to put more effort into believing my experience and intuition.

I was able to find a Phycologist near me who was known to be qualified for assessing adults for ASD. I emailed and not too long after was able to get a meeting on the calendar!

In my experience, this whole process has moved pretty quickly, which I am so grateful for because I know many don’t get that same chance.

Just yesterday I had my assessment. I think I feel good about it, but also some anxiety. I’ll have my follow up meeting on the 13th of this month, so I guess we’ll see!

Thanks for reading my experience 🖤