This is going to be hard for me to write and explain. I have been thinking about this, and researching it, for several years at least now. The easiest way for me to start off will be with linking to this blog post by Rory Reckons on Autistic burnout. This, by far, is the best explanation of what happened, is happening, to me since about my late 30’s to now. It is so close to what happened, how I was, am, feeling that I could have written it myself.
My journey into the possibility of Autism began while I was researching my rare disease periodic paralysis (PP), and all the possibly accompanying comorbid conditions. That lead me into getting whole genome sequencing (WGS) done to try and find the causative gene for my rare disease, and any other possible things that may be causing other symptoms. I saw a few genes come up talking about autism, but didn’t really think much about it because I always saw the stereotypes in the media and thought that isn’t me. One that came up in the results, that matched a lot of my symptoms, was Ehlers-Danlos syndrome (EDS) and another was mitochondrial (mito) disorder. In the support groups for my periodic paralysis I saw many talking about their hypermobility and EDS, and a few times I heard people talk about the possibility of mitochondrial disorders being primary or secondary causes of PP. So I joined some EDS and mito support groups and just started listening, because that is what I do and I want to make sure I listen a lot, make sure that it really is something that is related to me, and not something I am just wanting to be related to me. I think this is because I have been disbelieved so much in the medical community, plus I really don’t want to get it wrong because I don’t want to treat something I don’t have because I have been given treatments that have caused me so much harm I really need to get it right.
Anyways, I started hearing about people in the EDS and mito groups talking about autism more often and a possible link with autistic people having these health problems. They began sharing articles about autism and I started to see more people talking about being #ActuallyAutistic online. I began listening to what they had to say, reading the resources they shared, and realizing that this may explain who I am, and why I am the way I am. The header image explains the process I pretty much went through mentally in coming to the realization I am autistic. During this process I took several online tests, including many I don’t share here, showing that I am likely autistic, just another piece cementing for me that I am autistic.
Another thing that I started realizing when looking into being autistic is the other things autistic people sometimes have too. Like attention deficit hyperactivity disorder (ADHD), obsessive compulsive disorder (OCD), rejection sensitive dysphoria (RSD), demand avoidance, etc. Just like with autism I had these media influenced images of things like OCD and I thought that couldn’t be me, then I started listening to people who have it, and I realized it wasn’t really anything like that for most people and that I likely have it. So after listening and learning more again, I found a couple more tests to see if there was a possibility, and again found more that I have as well. I also have ADHD, OCD, RSD, and demand avoidance.
I am avoiding the terminology PDA, or pathological demand avoidance, because it is very controversial and I believe demand avoidance describes it accurately for me.
* Rare Disease | # Genetic Link
- Double Vision
- Mild Cognitive Disorder
- Mollaret’s Meningitis (Recurrent Viral Meningitis)*
- Periodic Paralysis*
- Spinal Stenosis
- Traumatic Brain Injuries
Self (SD) & Suspected (SUS) Diagnosis
- ADHD (SD)
- Andersen-Tawil Syndrome*# (SD)
- Autism# (SD)
- Dysautonomia (SD)
- Ehlers-Danlos Syndrome or Connective Tissue Disorder (SUS)#
- Inflammatory Bowel Disease (SUS)#
- Leigh Syndrome*# (SUS)
- Mast Cell Disorder (SUS)
- Mitochondrial Complex III Deficiency# (SUS)
- OCD (SD)
- Paramyotonia Congenita*# (SUS)
- Spinal Instability (SUS)
Associated Autism Characteristics
- Skin sensitivity
- Mirror-touch synaesthesia
- Auditory Processing Disorder
Other Supporting Evidence
- Strong empathetic connection to animals
- Regularly told to stop making sounds with my mouth or body
- Have meltdowns when get too stressed
- Need to rock or sway to sooth at times
- Was bullied at school, but some other kids stood up for me
- Only had a couple close friends as a child and and adult
- Substance abuse problems in my twenties
- Struggled through school and only got some college done due to stress
- Testing in high school showed very smart, but poor grades
- Adverse reactions to SSRI’s
- Reduced anxiety due to not having to interact in social situations during pandemic
- Autistic mirroring (especially accents)
Things That Helped Me
🎭The Masked Autistic Quiz🎭If you’ve spent your life ‘faking normal, you might not look autistic to the casual observer. So I’ve made a questionnaire that’s tailored to the masking autistic adult.#ActuallyAutistic#AllAutistics — Steve Asbell (@steve_asbell) February 24, 2020
#ActuallyAutistic folks, during interactions with strangers my coping mechanism is to shut down. Instead of scripts to manage, I just bloop my way through, even with "basic" interactions, because I forget to expect the interaction.— Mx. Charis Hill ♿ (they/them) (@BeingCharisBlog) December 25, 2020
Seeking advice for scripting tips!
OCD is a maladaptive coping mechanism, which is why it presents in many different ways.— Sam Dylan Finch (@samdylanfinch) December 27, 2020
You might experience trauma, and develop agoraphobia by compulsively avoiding leaving your home.
You might have a chronic illness, and develop hypochondria as a reaction to medical trauma.
“Self diagnosis isn’t always accurate” yeah well neither is the diagnostic criteria that profesionals use.— shira! (she/they) (@shiraisinspired) January 12, 2021
finding out that neurodivergent people struggle with interoception (knowing when you’re hungry, tired, have to go to the bathroom, etc) made me feel so much less alone.— jules rylan ✡︎ 🏳️⚧️ #SaveSheikhJarrah (@genderjoy) January 23, 2021
if it's okay for me to ask (i'm not autistic), what is a good way to genuinely help with someone's meltdown? or does it vary from person to person?— xeno! check 📌 (was xenocrates32) (@zitscrew) January 20, 2021
Can we have a twitter thread where we list all of the therapies and supports that parents -can- use to help their autistic kid? #OtherWaysThanABA #SayNotoABA #AskingAutistics #ActaullyAutistic— AutisticSciencePerson (They/Them) (@AutSciPerson) April 12, 2019
My go-to is ear defenders/earplugs/sunglasses/hoodies/fidget toys/punching bag
Let's talk about demands.— AutisticSciencePerson (They/Them) (@AutSciPerson) January 29, 2021
Parents are taught too often that children "must" do certain things.
Here's how you can assess whether it is truly a "must."
Agreed - the "highly sensitive person" terminology is often just a way for people to distance themselves from the words "autism" and "disability."— AutisticSciencePerson (They/Them) (@AutSciPerson) February 4, 2021
Honestly it's used very similarly to how functioning labels are used. "They're a highly sensitive person, not autistic." https://t.co/4htMyDrDvi
A thread:— AutisticSciencePerson (They/Them) (@AutSciPerson) February 4, 2021
I think parents are often told to always make their kid be happy/content at all times.
And this often becomes and issue when kids (autistic or not) rightly feel negative emotions, such as sadness/anger, or when an autistic person has a meltdown/shutdown.
"all knowledge of Autism in academia is based on the work of two incredibly flawed men, both with incredibly flawed ideas & practice from the 1940s. Everything we know professionally & societally about Autism is underpinned by their work." @KieranRose7— AutisticSciencePerson (They/Them) (@AutSciPerson) February 6, 2021
Me sitting through a recent meeting where someone used me as an example of being high functioning & looking like I do need very many supports: 😬😬😬— Riah (ry-uh) Person (@lilririah) February 6, 2021
Disability groups do this too. https://t.co/fWqhfoHZI7
When parents say their autistic kid doesn't have auditory sensitivity, and then give out details that show that the kid (likely) has auditory sensitivity, a thread:— AutisticSciencePerson (They/Them) (@AutSciPerson) February 8, 2021
1. They don't want to do X because it is too loud
2. They refuse to use the bathroom at school/in public.
Adding that not all of us have good body awareness!— Teaching In Autistic 😷 (@InAutistic) February 8, 2021
I bought ear defenders because I get painfully sound sensitive from migraines - and discovered that I’d habituated to a quite high level of sensitivity and so had lost all awareness of the pain! (That’s not a good thing!!!) https://t.co/qSIScrRW7F
it can also be an interoception issue (not getting bodily cues) which is common in ADHD and autism.— jules rylan ✡︎ 🏳️⚧️ #SaveSheikhJarrah (@genderjoy) February 14, 2021
that being said, being neurodivergent in our society is inherently traumatic, and a lot of us have been taught to ignore our sensory needs/input for the comfort of neurotypicals.
Is autistic perfectionism actually an autistic thing or could it be a trauma response from being constantly told we're getting things wrong? Do we think maybe if we just try hard enough and do everything perfectly it could stop people from being mad at us?— George Watts (@autgeek) February 11, 2021
Anyone else with ADHD and/or perfectionism do that thing where they get SUPER excited about and invested in a project and pour their heart and soul into it and then make just one (1) tiny mistake and find it impossible to continue?— shira! (she/they) (@shiraisinspired) February 21, 2021
Autistic behaviours that are generally discriminated against, despite being harmless and just how we are.— Pete Wharmby (@commaficionado) February 14, 2021
How to learn to unmask:— AutisticSciencePerson (They/Them) (@AutSciPerson) February 24, 2021
If you don't realize you're doing it, you can't unlearn it.
Where are your eyes going when you talk to someone and why?
What do you do with your body language when you're completely alone versus when you're at work/around people?
Reminder:— AutisticSciencePerson (They/Them) (@AutSciPerson) February 21, 2021
Text-based communication (email/instant message) is an accessibility need, not a preference.
A lot of NT people seem uncomfortable by this because they're not used to communicating this way. It doesn't come naturally.
NT preference does not trump accessibility needs.
Autistic people and birthdays/anniversaries.— Pete Wharmby (@commaficionado) February 23, 2021
A short thread. Based on my own experience.
Positive research thread! Here's a research article on autism and sleep by @JoPavlopoulou— AutisticSciencePerson (They/Them) (@AutSciPerson) February 24, 2021
Linking the article first before I get into detail (worth reading the whole thing!) -https://t.co/w2W2gVdSZc
please make communication easier for your neurodivergent friends!!— jules rylan ✡︎ 🏳️⚧️ #SaveSheikhJarrah (@genderjoy) February 26, 2021
this includes autistics, traumatized people, people with paranoia, and more! please RT this to pass it along. pic.twitter.com/6YZopCg2tZ
Autistic people and birthdays/anniversaries.— Pete Wharmby (@commaficionado) February 23, 2021
A short thread. Based on my own experience.
Recognizing when you're feeling under- or over-stimulated is a key skill for better coping, but it doesn't always come naturally to ADHD and/or autistic folks.— Structured Success (@StructuredSucc) March 2, 2021
What's a sign that you're feeling under- or over-stimulated?
I wish non-autistic people understood that when I am stressed, to them my voice sounds "defensive" or "aggressive," when what I really am is absurdly anxious, stressed out, and out of my element.— AutisticSciencePerson (They/Them) (@AutSciPerson) December 15, 2020
I feel like esp. when I'm vulnerable with people, they think I'm attacking them 1/8
has anyone ever wondered that maybe ND people don't know how to recognize our emotions because we're taught to think about and that we should experience emotions in the ways that neurotypical people do?— The Black Emma Frost (Read Pinned Tweet) (@iwritecoolstuff) March 3, 2021
I made another masking diagram because it seems hard for neurotypical people to understand what it means for us autistic people.— AutisticSciencePerson (They/Them) (@AutSciPerson) March 3, 2021
There are multiple layers of masking (columns 2 and 3).
The 1st column on the left is what others see.
All columns are happening simultaneously. pic.twitter.com/YZdU210pyS
Nothing is more mortifying that crossing that invisible, unfathomable line https://t.co/EecUTsvT7B— Pete Wharmby (@commaficionado) March 3, 2021
Friendly neighborhood reminder:— autistictic (@autistictic) March 3, 2021
THERE. IS. NO. TREATMENT. FOR. AUTISM.
THERE. IS. NO. CURE. FOR. AUTISM.
There is no medication, diet, supplement, ointment, therapy, surgery, no nothing to treat or cure autism.
ANYONE who claims otherwise is lying.
#AskingAutistics#NeurodiverseSquad— Sparrow/Liz (semi-hiatus) (@UntoNuggan) March 3, 2021
When you're doing a task that requires a lot of concentration (even if it doesn't seem to require a lot of concentration when other people do it)
If you get interrupted, do you feel like, instant rage?
And if so, how do you cope with it?
If you keep wondering if you're autistic/have ADHD, remember that neurotypicals don't ever question it. They just know they aren't.— Ade (@ADHDelaide) March 4, 2021
If you keep going back to it and relating to it, then you're probably on the right path.
RSD (Rejection Sensitive Dysphoria), is the most intense side of emotional dysregulation in ADHD. But the opposite side of the spectrum is less known: sometimes, when feelings get too much, some ADHDers get overwhelmed and shut off unwillingly, leading to emotional disengaging.— Ade (@ADHDelaide) April 14, 2020
when you say that you or someone else has "mild" or "severe" autism, ADHD, OCD, depression, anxiety, dyslexia, etc., what exactly does that mean?— The Black Emma Frost (Read Pinned Tweet) (@iwritecoolstuff) March 5, 2021
what information are you explicitly communicating with people?
how helpful is that in communicating support needs?
The problem:— Steve Asbell (@steve_asbell) March 4, 2021
If you Google ‘autistic support’, you’ll find resources for struggling parents.
If you search ‘autistic help’ you see resources for parents... their child is autistic.
So if you are autistic and seek help, what do you find?
That you’re seen as ‘the problem’.
Since there’s a lot of confusion on these terms:— The Autisticats (@autisticats) March 5, 2021
“Neurodiverse” is a word to describe a group of people with different neurotypes (including neurotypicals).
“Neurodivergent” refers to a single person (or group of people) whose neurology differs substantially from the norm.
How to properly socialize with an autistic person:— Steve Asbell (@steve_asbell) March 5, 2021
A THREAD. https://t.co/u5hgXy7RK5
Overcoming shame has been a continuous journey for me. Here’s how many of us experience shame:— René Brooks | Black Girl, Lost Keys | ADHD (@blkgirllostkeys) March 7, 2021
quote tweet or reply with a question someone should ask themselves if they think they might have autism. aka, a question that has an answer which could help someone better reflect on whether or not they might be autistic.— jules rylan ✡︎ 🏳️⚧️ #SaveSheikhJarrah (@genderjoy) March 8, 2021
Everytime I bring up that ABA is abuse, well-intentioned allistic people ask "Well what's the alternative?"— AutisticSciencePerson (They/Them) (@AutSciPerson) March 25, 2021
As if there's a separate formula for autistic kids, instead of just your regular love & support from a parent.
Autistic kids are children. They don't need an alternative.
Since I've gained a lot of followers over the last few weeks, here's a general thread on autism stuff for people who don't know much about autistic people (also because autism "awareness" is coming up, though I prefer to say "autism acceptance" cause that's what we need!) 1/25+— AutisticSciencePerson (They/Them) (@AutSciPerson) March 7, 2021
Neurotypical people are already "aware" of autism.— AutisticSciencePerson (They/Them) (@AutSciPerson) March 31, 2021
But they're not aware of things that are negatively affecting autistic people.
This is an #AutismAwarenessWeek megathread about what you need to know.
(autistics do not need to read it).
one of the main reasons why there's talk of "adult ADHD" and "adult autism" and why ADHD and autism are thought to be "childhood disorders" is b/c of the idea that therapy, meds, and such will "fix/cure" them by adulthood— The Black Emma Frost (Read Pinned Tweet) (@iwritecoolstuff) March 11, 2021
Let me show you how many types of consent ABA therapists break.#SayNoToABA #ColorTheSpectrum— AutisticSciencePerson (They/Them) (@AutSciPerson) April 20, 2021
"Consent: Both people want to share touch."
Nope. ABA therapists do "hand-over-hand" to make autistic kids complete tasks that they either can't physically do or won't do. 1/8 https://t.co/vZbyVv1kqi
We need to talk about how gaslighting of autistic people's sensory sensitivities can lead to poor physical health in autistic people.— AutisticSciencePerson (They/Them) (@AutSciPerson) March 28, 2021
There are many reasons why you shouldn't gaslight an autistic person's sensory sensitivities, but this is a really important one.
Alternative communication methods are not only for nonspeaking or minimally speaking autistic people.— AutisticSciencePerson (They/Them) (@AutSciPerson) May 25, 2021
Being "highly speaking" as an autistic kid does not mean "can express myself in words super clearly all the time even when nearing meltdown/shutdown"
Use typing/writing/etc 1/4
Proposition: ADHD and autism are all on the same spectrum and we *will* see a collapsing of these categories as distinct.— Angry Black Changeling (@AshleighJMills) April 2, 2021
Hopefully before I die. Sooner if the psychiatric industry stops being led by the stale + pale.
Yes, I understand this.— autistictic (@autistictic) May 24, 2021
Yes it is often true.
No, as a general statement like this it‘s neither true nor harmless.
As an autistic person I do stuff over and over again that I truly am sorry for, that I truly try to change, but that my fucking brain doesn‘t let me change. https://t.co/wc8ro0LarJ
I want to clarify something.— AutisticSciencePerson (They/Them) (@AutSciPerson) April 4, 2021
When we say "ABA is abuse" we don't mean rewarding a child for doing their homework, that they can do, is abuse.
We mean that being rewarded for being in sensory pain & emotional distress has long-term impacts on mental health & emotional trauma 1/3
It's the penultimate day of #AutisticPrideMonth and one thing we haven't talked much about yet is masking. Dear #ActuallyAutistic friends, can you retweet this and tell us what masking means to you?#AutismAcceptanceMonth— your friend myk (@mykola) April 29, 2021
Chart of what autistic people may say and what they may mean: pic.twitter.com/Asxp451o8a— AutisticSciencePerson (They/Them) (@AutSciPerson) May 25, 2021
Yesterday I saw someone say to an autistic person,— Max Is Autistic (@MaxieMoosie) May 4, 2021
"Why are you trying to please everyone? Just let go!"
Let's talk about why an autistic person would care about pleasing everyone and why just letting it go is dismissive.
Today, I would like to think about autistic people and eating disorders. Content warning for this, therefore.— Ann Memmott PGC🌈 (@AnnMemmott) May 23, 2021
Some autistic people struggle with food and drink. Others may not. Why might this be?/
Autism and being tired all the time.— Pete Wharmby (@commaficionado) June 20, 2021
A thread 🧵🧵🧵
S2 E9 - Carolina Sphinx Moth
In this episode Nicholas (Josh Thomas) goes on a self diagnosis journey of his own to discover he is autistic. He is aided by his family, and friends, who some see it right away and others dismiss it immediately, but then eventually come around. They did a really great job of showing what the self diagnosis journey can look like. This is of course in a very short time frame for TV purposes, but for most people this realization period is over months and years. Lillian Carrier (IMDb and Twitter) plays Drea, and is the Autism Consultant, on the show and Founded Ourtism. You should check out her work too.
I related so much to this episode and all the feelings that go along with the process of discovering you are autistic. The whole show is really great, but this episode really fits with this post. I hope you enjoy it too.
With all of this information, and the information I have gathered in listening and learning from #ActuallyAutistic people, I feel comfortable diagnosing myself with Autism, ADHD, OCD, RSD, and demand avoidance. I am #ActuallyAutistic and just need the world to realize my brain works differently than others and make accommodations for me to be able to function alongside everyone else. I will leave resources that have helped me below that I hope will help you too if you are struggling.
- Living with Rejection Sensitive Dysphoria
- How to get diagnosed ActuallyAutistic in just 26 years
- Why ABA Therapy is Harmful to Autistic People
- Autistic Science Person
- Autism Inclusivity
- Neurodivergent Rebel
- Aspie Tests