Autism Resources

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Neurodiversity rocks

Pro-tip: If you’re just looking for my list of resources, scroll down the page halfway to bypass this lengthy personal introduction and you’ll find them. I’m also aware of changes in labels and language, and this is included fully below if you read all.

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I never expected to be delving into the incredibly deep and complex world of autism and neurodiversity when I suddenly landed in a wheelchair in early 2012 at 45 years old.

I had remained blissfully ignorant of most of its complexity, thinking of it only as something else others had to deal with since I had no children.

That said, I always struggled to fit in, and battled many of the common co-occurring conditions along the way, as I tried to pass as a “neurotypical” female. In fact, I’m now convinced this lent to my onset “cascade” of 2012 from so much accumulated stress of trying to pass, and not pass out (heh).

Well, fast forward a mere 12 months and as a newly minted EDS support group leader in Oregon, when no less than 3 people asked me if I “had Asperger’s”!* Uhm, well, no, not officially, but it left me wondering, so I took a deep dive, and have since come to realize that it appears to be highly co-occurring with connective tissue disorders involving hypermobility, and also Mast Cell (Activation) Diseases. (Hold your terminology checking horses folks, and read on.)

Why, we don’t yet fully know.

*Yes, I’m keenly aware the formal diagnosis of Asperger’s was taken away by the DSM-V in 2013, but some in the community still refer to it, although this has fallen out of favor since about 2018. But some prefer and still refer to this identity, especially those formally diagnosed with it (in the past), and have even built businesses around it, so… it will probably not fully disappear, or not for a long while. I will use “autistic” going forward myself when not recounting history.

So I considered (past tense now) myself a likely undiagnosed autistic, but realize this was not an official diagnosis, and some took issue with that. I’m heartened to see increasing acceptance of self-identification and “self-diagnosis” in the autistic community over the years. Formal diagnoses are both inaccessible to many, and also unaffordable for many. And, also sometimes harmful. (It can be used to discriminate, or infantilize or deny agency due to continued stigma and lack of understanding and proper support in many arenas.) So please respect other’s lived experience, do not add to their gaslighting, nor deny them (us) much needed support.

Nay, I could use some in fact. 

When to Suspect Autism (outside of the DSM 5 criteria)

Here’s a great unofficial checklist of less well recognized autistic traits in better masking and passing folks of all genders (you parents might want to really self-examine): Samantha Craft’s (no longer gendered) Autistic Traits Checklist (2022) EDIT: That site appears to be down as of April 2024, alas, and I haven’t been able to reach Samantha to inquire about it.

So meanwhile, here is an older gendered version she first put out for AsperGirls. Just ignore the gendering. Anyone can experience these traits, of any gender, race or ethnicity. They are just less well known/less stereotyped, so not “official” traits and signs. Think of this as a “When to suspect high masking/passing autism” list.

Some less well-known or recognized traits can include:

  • Extreme shyness / conversely, may interrupt a lot or inappropriately (rule out ADHD also)
  • Deep thinking/introspective, may have precocious vocabulary (use big words when young)
  • Good at mimicking or imitation of live people or TV characters (parrots lines)
  • Skin picking, nail biting, rubbing, hair twirling, gum chewing, toe-tapping
  • Stimming by dancing, bouncing, twirling, needing high-pressure hugs (alt: may avoid touch)
  • Naive or gullible, easily led, honest
  • Trouble with oversharing, and or reciprocity (turn-taking) and friendships
  • Trouble identifying feelings, both physical (interoception) and or emotional (alexithymia)
  • May play teacher, and direct play or work groups, or be rigid or perfectionistic (even when young)
  • May seem fine at school or work, but explode, “lose it” or melt down upon getting home (alternatively: may elope – run off /away to be alone and not talk until ready)
  • Trouble falling and or staying asleep
  • Lots of allergies and sensitivities (food, chemicals, scents)
  • Sensory issues – either hyper- or hypo – sensitive, food avoidance due to same
  • Low frustration tolerance, melt down easily (NOT same as tantrum, this is a stress release)
  • Dislikes interruptions or changes in routine, may need help with transitions (extra alerts)
  • Highly sensitive – probably passes the Highly Sensitive Person quiz (if over 18)
  • Signs of Hypermobility Spectrum Disorders or EDS, hypotonia as infants, uncoordinated, clumsy

This SHORT list is BY NO MEANS DIAGNOSTIC OR COMPREHENSIVE. Talk to a professional for a proper evaluation.

>>> We interrupt this preface to bring you the recent news (2021) that I have since indeed been formally diagnosed as autistic with co-occurring ADHD also finally, at 54 by my HMO as of June 2021. Go me. So I will start calling myself properly autistic now. <<<

Further, I found it extremely commonly co-occurring in the EDS & MCAD support groups I landed in, both on and off line, and continue to the longer I observe the groups. (Along with ADHD by the way.) One on Inspire has over 30,000 members in it alone, another on Facebook has 60,000, so a decent sample size even subtracting for some over-lap. Everyone seemed to be either autistic, living with, or related to someone who was, or had ADHD, or showed subclinical signs of it as I had until now.

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I did not give this too much weight until Dr. Theoharides began to correlate MCAS and autism as well as I learned in 2015. So either we’re onto something, and whatever drives hypermobility and MCAS also likely drives neuroplasticity and neurodivergent development, or we’ve got one heck of a coincidence on our hands. I’ve since added it to what I’m calling the “Chronic Constellation” for lack of a better term. 

Interestingly, the most common form of EDS, the hypermobile type still has no single gene identified as the cause yet, much like the great majority of forms of autism don’t either. (Fragile X excepted.) UPDATE JUNE 24, 2024: The Norris Lab at MUSC just uncovered a Kallikrein gene that may potentially explain a subset of us! (So not even a collage defect this time.)

I find this latter often alternatively or perhaps under-diagnosed as any combination of the “Subclinical Alphabet Soup” I find of: ADD/ADHD, SPD, OCD, BPD, NPD, depression and anxiety among other things. We may have all those things too, but still be missing the bigger picture of either autism and/or ADHD- any type among other things.

However, I will focus on those resources relating to neurodiversity and neurotype here more than personality and mood disorders. I’ve created a separate page of Mental Health Resources for the latter, though again, they are all very highly comorbid for as yet unknown reasons. (I’m starting to suspect all the underlying inflammation from unrecognized comorbid MCAD and neuroinflammation from leaky brains and guts, along with being secondary to poor treatment, trauma and abuse but that is just my hunch.)

I feel strongly we’re all circling the same drain – or hill if you prefer, and will some day find we’ve all got bits of the same very large animal in our hands, but like the six blind men and the elephant, we just don’t know it yet. 

And if you are new to the Ehlers-Danlos syndromes (EDS) and Hypermobility Spectrum Disorders (HSD) and wondering whether to suspect them, you might check out this page. And see this page to suspect co-occurring MCAD. The latter may drive some of our sensitivity to scents, pressure, chlorine, vibration, sound etc.

Please note the list below does not constitute endorsement of any particular treatment or therapy*, nor am I espousing a “cure” for autism now, only support. As I’m so new to this world, and am not a parent, I’ve been sort of receiving a crash course and having to madly catch up with the latest in autistic thinking (from actual autistics, vs their parents/carers), and have found a very confusing array of sources and views to sort through, all purported “experts”, autistic and otherwise.

* Quite the opposite, I now strongly oppose the use of ABA therapy for the reasons shown below.

Autism Resources

I admit to following the better known names and louder voices at the start and thus getting a view biased toward curing and compliance accordingly.

Thankfully Twitter is introducing me to many marginalized voices who also deserve to be heard, and I’m appreciating learning from. (And slowly adding below.) Including, but not limited to (in no particular order, and very incomplete):

  • @lilririah, @autsciperson @joychaos, @WalkerSensei
  • @autistictic, @teona,@bibicosplays, @ebthen @ekverstania @mykola
  • @commaficianado, @slooterman, @NeuroRebel @KieranRose7
  • @ShannonRosa @AnnMemmott @DrMBotha @soundcube
  • @blkgirllostkeys, @autselfadvocacy @thinkingautism @endeverstar
  • And the inimitable Queen of Black Disabled Twitter, the late @Tinu (See #ForTinu for details)

Dogs don’t bark for no reason – we don’t stim/cry/melt down/bang/run off/sing/go mute/not respond or want to spend time alone or with stuffies etc. for no reason either. I’m increasingly convinced in 2021 that a stance of following and observing more than pounding into compliance for all people results in better outcomes for all, including exhausted parents.

Thank you to all my patient teachers “out there”, and your continued patience as I continue to navigate these deep waters and come to a fuller understanding and uproot my internalized ableism. And beginning to appreciate the need for Augmentative and Alternative Communication Devices (AAC) and sign language even if I can use verbal speech most of the time. (Believe it or not, sometimes words really do fail hyperverbal little me, especially when I feel cornered or badgered, and especially when I’m in bad pain, which is increasingly often.)

I’m also slowly learning to boost actually autistic voices (including my own) and have sorted the links below into those by and from actually autistic people of all stripes and identities at the top, and “the rest”. But not including the loudest, most ableist voices I don’t need to mention as everyone will hear of them if they haven’t yet. (They are the top result on Google and in mainstream media and Hollywood so do not need any boosting.) Please apprise me of any broken links too thanks.

ETA November 2022: I’m now being tapped to co-author a book on the co-occurrence of autism and EDS, to be published by Jessica Kingsley Publishers! Stay tuned!

ETA March 2023: I may break this Resources page up also into other subsections on their own separate pages as I did with my overlong EDS Resources page recently.

ETA October 2024: I am about to hatch an ADHD subsection or separate page altogether shortly too. (I’m realizing it’s just as prominent in the community.)

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I can really really use any level of support here too, thanks! (I’m about $100/month short still, and having to constantly beg for help/resources.) Thank you!

Last Updated: October 30, 2024

On the Co-Occurrence of EDS, HSD, Autism and ADHD etc.

For Parents (and why ABA and PBS are still bad ideas)

Black Autistic Experiences and Resources

Learning opportunities BY and / or FOR autistic people:

Autism-Positive Autistic YouTubers to follow

Some Autistic and or ADHD and AuDHD Coaches

Articles and info for everyone:

And check out the hashtags #RedInstead and #NOTmssng and #ActuallyAutistic on Twitter for more autistic views on “awareness”. (Those not on Twitter can also just google those terms and see the results that way too.)

Yes, SOME (possibly self-hating) autistics are quite ableist, and side with Autism Parents (TM) in the notion that it is a pathology to be prevented and or cured and mourned. So just know that autistics are not a monolith, just as no group is a monolith (all think exactly alike). Yes, this requires discernment, but so does pretty much everything in life. But the above should give you a good leg up at least.

Five Things Autism Parents Wish They Would Have Known – A. Stout blog – I posted this here, as I don’t know if the author is autistic themselves or not yet, but… it was so autism-friendly I wanted to include it in the “for autistics” section.

Autism in … non-men 2022

I first ignorantly labeled this subsection as “Autism in Girls and Women” in June 2019 as there was an increasing body of work around why girls and women are so often not diagnosed with autism. The medical and wider world are just beginning to recognize this disparity resulting from only studying a certain level and flavor of autism in white boys back in the 1900s in Germany. But I have realized this is also inaccurate and misleading in 2021.

I really appreciate this recent (2021) video by “Yo Samdy Sam” on YouTube who explains really well why gendering autism at all is a bad idea. That is, calling traits “male autism”, or “female autism”. Not only are we erasing trans and non-binary experiences (which are highly co-occurring in the autistic community as well) as mentioned, but it may lend to gender dysphoria in any gender if someone presenting /feeling female or non-binary feels like they experience more “male” autism, or vice-versa.

It should all just be called autism, period. It’s just that better masked less obvious forms (in all genders and identities and sexualities) go undiagnosed the most – not just in girls and women. Thank you for that bit of insight Sam! And, to everyone: Google is your friend. If you encounter an acronym or term that is new or unfamiliar to you (such as cishet, or intersex and more), Google it! (Doctors do it in front of us all the time!)

I expect to see increasing amounts of information on this come out. I will keep growing this list as I come across yet more great resources to share:

I welcome your input and additional resources at: info@ohtwist.com.

Original list pre 2021 of links about autism in girls and women, which should really just say “non cis men”, or just better masked, or less well recognized traits from the dominant paradigm in all genders:

General Information and Support from Mostly NTs for other NTs

This older section is more biased toward parents and neurotypicals (NTs), and their views of and about autism and autistics, which the latter may find triggering, since they are not usually consulted or centered. I confess it may reflect my still evolving formerly more ableist POV of autism as a pathology, as that’s how I was raised, and which I am still shedding. (Thanks for your patience!) Please take all you read with a grain of salt and keep an open mind. I am slowly deleting some of the most ableist sites and links. (I just deleted a few more 10/20/21.) I will probably ultimately delete this section and just leave the ones above here at some point.

EDS Resources
A precious spoon!
Google will net you many many more resources on autism and related/comorbid disorders (ADD, ADHD, OCD, depression, anxiety). Please try to be discriminating and use discernment to see if they contain an autistic or neurodivergent point of view (POV) whenever possible before embracing or adopting. (Look for material BY autistics, not ABOUT them.) This will help prevent sustaining outdated and harmful stereotypes and tropes as we progress, thank you.

Other related resources for our many comorbidities: