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.
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.
>>> 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.
I did not give this too much weight until Dr. Theoharides began to correlate MCAD and autism as well as I learned in 2015. So either we’re onto something, and whatever drives hypermobility and MCAD 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.)
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.
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.
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):
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.
Book: Afrotistic, A novel, the first about a Black autistic female (everywhere books are sold) 2023
Some disabled Black tweeps on Twitter to follow: @BlkGirlLostKeys @Lilririah @BeingKaylaSmith @autinelle @teona @MizTeeFranklin @Bibicosplays @Tinu @plscallmeky @mauimescudi @SurvivingTime @FlyIngenuity
Learning opportunities BY and / or FOR autistic people:
Google doc of resources to #StopTheShock of disabled people (the use of veryhigh powered tasers to shock “non-compliant” autistics and others) in 2021 still. (THIS IS LITERAL TORTURE OF HELPLESS INDIVIDUALS AND HAS NO PLACE IN AUTISTIC SUPPORT OR ANYWHERE ELSE FOR THAT MATTER. ALL SUBJECTS ARE TRAUMATIZED BY IT.)
I watched “Music” – Jennifer Litton Tidd, on the problems with Sia’s over the top stereotyped musical movie produced in 2021 (This movie is widely held to be problematic in the autistic community. This article explains why.)
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.
People with Autism Experience Pain at a Higher Intensity – Neuroscience News, January 2023 (Me Jan – NB some with more rare EDS, like clEDS may actually experience LESS pain than they should due to insufficient enervation of the body, and end up injuring more before realizing it’s too late)
Autism Medical Comorbidities – 2021 (only highlights some of the most common, not including hypermobility spectrum disorders and EDS surprisingly) Al-Betagi
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: firstname.lastname@example.org.
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.
Are you a Hidden Aspie? (yes I know that term is now offensive to some, but the description of less obvious autistic traits may help some to suspect)
Understood.org – help for uncovering your child’s neurodivergence and finding support for same
Ollibean – site for disability rights, inclusion and neurodiversity
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: