Autism Resources
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.
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.
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. They are just less well known/less stereotyped, so not “official”. Think of this as a “When to suspect high masking/passing autism” list.
>>> 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 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.
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
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.
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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: August 19, 2024
From Autistics and By Autistics
For Parents especially recommended by autistics:
- Safe places online for Parents of Autistic children and Autistic people to learn about Autism – Kieran Rose
- NeuroBears is for autistic young people, and their families, who want to learn what it means to be Autistic in a really positive way.
- Free Printable Autism-Positive Book List by Not An Autism Mom
- Free Autism-Positive Book List by Kieran Rose at The Autistic Advocate (eBook available for $5)
- For parents who think they aren’t autistic: Samantha Craft’s Autistic Traits Checklist (2022)
- Recommended books about Autism, PDA, Neurodiversity etc. – 2023 by Autistic Truth
- Books by Dr. Mona Delahooke on reading body based signals in kids, vs top down behaviorism
- AAC is Everything, Everything is AAC — Why Guided Access & Other Methods of Locking Tablets Remove Autonomy AAC in the Cloud – 2021 Tuttleturtle42
- Don’t Mourn for Us – Jim Sinclair in Our Voice November 1993
- How to not be an ableist parent, plus hundreds of tips for IEPs and 504 plans
- Lives in The Balance (a recommended site for parents of non-speaking kids who may act out)
- Autistic Allies
- Punished by Rewards? A Conversation with Alfie Kohn 1995
- Responsive Parenting Inspirations
- Kind and Firm at the Same Damn Time – parenting courses by SuperNova Momma
- 10 Alternatives to “Consequences” When Your Child Isn’t Cooperating – Aha Parenting
- Defense Mode: Why they seem so stuck and shut down all the time via Asperger Experts
- In Tune Pathways by Kristy Forbes of Australia
- Thread of additional autistic recommended resources for parents of newly recognized neurodivergent kids by Shannon Des Roches Rosa 2022
- How listening to autistic adults helped me understand and support my son – Shannon Des Roches Rosa vai WaPo 2019
- A Black Autistic Mother Speaks Candidly About Racism, Intersectionality, and Her Fears and Hopes Around Raising Two Black Autistic Sons 2020 The Articulate Autistic
- A Checklist for Identifying Sources of Aggression – via We Are Like Your Child
- When a Non-Autistic Child Is Raised by Autistic Parents, Their Experiences Are Similar to Autistics Raised by Non-Autistics – Terra Vance via Neuroclastic 2022
- My Kid Had a Meltdown Tonight V.R. Blevins 2022
- Hey Parents of Autistic Kids: Here are Five Easily Avoidable Mistakes via TPGA 2010
- Speaking of Autism – “How do I get an Autistic Person to X?” – you’re asking the wrong question – Quincy 2019
- Talking to Kids about Healthy Sexuality – via Happily Family blog 2023
- If not ABA, Then What? – Sparrow Jones author of excellent blog Unstrange Mind
- Eleven Ways You Can Make Your Autistic Child’s Life Easier – TPGA
- How do you talk to a non-verbal person with Autism? by Ido Kedar (Ido in Autismland)
- Thread on why it’s bad for parents of high support needs autists to suggest Aspergers is not a form of autism by @EbThen 2021
- Optimising Autism Part I – Tania Melnyczuk (should lead and link to Part II in YouTube)
- the case for backing the frick off 2013 Beth Ryan
- Gecko Community UK -support for students 11-20 struggling with mainstream education
- Being Someone To Trust – course by Jodie Smitten for relatives and carers of autistics
- The Ableist History of Autism Speaks – 2019 Crosman via In The Loop
- Books by Autistics for All via Autonomous Press
- Samantha Craft’s Autistic Traits Checklist 2022
- BOOK: The Secret Life of Rose -Inside an autistic head – Rose Smitten 2022
- EDS and School Resources (and a little autism too) – Jan 2024
Why ABA is Bad per Autistic adults who survived it:
- ABA – Unstrange Mind
- Treating Autism As a Problem: The Connection Between Gay Conversion Therapy And ABA – 2018
- Pervasive Undisclosed Conflicts of Interest in Applied Behavior Analysis Autism Literature 2021 Bottema-Beutel, Crowley in Frontiers in Psychology
- Stop ABA, Support Autistics – The Great Big ABA Opposition Resource List 2021
- Stop the shock, Petition to Close the Judge Rotenberg Center: Zapping is Torture! 2022
- Evidence of increased PTSD symptoms in autistics exposed to applied behavioral analysis 2018 Kupferstein, Henny
- Non-Speaking Autists Thoughts on ABA – Tania Melnyczuk 2019
- ABA is Abusive – evidence and testimonies via Neurodiversenby 2021
- Only an Ancient Science Can Save Your Child – Neuroclastic
- New report finds widespread abuse of autistic people – 2022 University of Sunderland, UK
- How therapy can traumatise autistic people (w/ Steph Jones) – 2024 Video interview by YoSamdySam
Black and Brown autistic experiences:
- EP 60: Black, grown and autistic 2023
- Autism in Black (website, with annual conference in April)
- Wentworth Miller, Mental Health Stigma, and Masked Autism – 2021 Dr. Devon Price via Medium
- Fidgets and Fries – on being Black while autistic
- “When You’re Black and Trans, There are No Safe Spaces – Dahlia St. Knives 2020 via Alma
- A Black Autistic Mother Speaks Candidly About Racism, Intersectionality, and Her Fears and Hopes Around Raising Two Black Autistic Sons 2020 The Articulate Autistic
- Issue 18: The Black Experience – Zoom magazine
- My Autistic Mind – podcast by Corey Roberts
- 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:
- Autism in Black Online Conference, April 28-30, 2023
- Neurodiversity Celebration Week March 13-19, 2023
- Autscape Conference by and for autistics coming August 2022
- Inside Autism (online course 4x /year by Kieran Rose)
Autism-Positive Autistic YouTubers to follow
- Neurowonderful
- Yo Samdy Sam
- Kayla Smith
- 25 Autistic YouTubers to Check Out – by Stephanie Bethany (includes the above 3 plus more)
Articles and info for everyone:
- Actually Autistic Wiki (born 2022 by @Fochti)
- The neurodiversity concept was developed collectively: An overdue correction on the origins of neurodiversity theory 2024 (group letter clarifying the true origins of the term)
- Neurodiversity – Some basic terms and definitions by Dr. Nick Walker
- 5 Shocking Reasons NOT to Light It Up Blue for Autism Day by Autistic Mama
- Samantha Craft’s (less recognized) Autistic Traits Checklist (2022)
- The Ableist History of the Puzzle Piece Symbol for Autism by Cassandra Crosman 2019 via In The Loop
- On Being Articulate – Just Stimming
- Autistic Social Hangovers
- Making Sense of Autism
- Neurodiverse Love
- Uniquely Human by Dr. Barry Prizant
- 107 Favorite Quotes about Autism and Asperger’s – The Art of Autism 2023
- Avoiding ableist language: Suggestions for autism researchers Bottema-Beutel, Kapp, Lester et al 2021
- Autistic Vs Allistic Communication Styles via AccessATE 2022
- Video: Letting Go of Control and Rethinking Support for Autistic Individuals – Amy Laurent TEDxURI 2019
- Monotropism via Stimpunks
- New Research Suggests Social Issues are Down to Neurotypicals more than Autistics 2017 via Critical Neurodiversity
- What is Speech Cluttering – via The Stuttering Foundation (I suspect this may be semi-common in those of us with hypeverbal ADHD as our brains get ahead of our speaking parts)
- New evidence ties Hans Asperger to Nazi eugenics program – 2018 Spectrum News
- ADHD Linked to Oxygen Deprivation Before Birth 2012 – Science Daily
- What is ableism and how can we tackle it? Kerry Mead via Bristol Autism Support 2022
- Autism tips for teachers – by an autistic teacher 2019 Fingus Murray via TES
- The Ableist History of Autism Speaks – 2019 Cassandra Crosman via In The Loop
- Stop ABA, Support Autistics – The Great Big ABA Opposition Resource List 2021
- Evidence of increased PTSD symptoms in autistics exposed to applied behavioral analysis 2018 Kupferstein, Henny
- PERSON-FIRST LANGUAGE IS THE LANGUAGE OF AUTISTIPHOBIC BIGOTS Dr. Nick Walker 2021
- Google doc of resources to #StopTheShock of disabled people (the use of very high 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.)
- ABA is Abusive – evidence and testimonies via Neurodiversenby 2021
- Is ABA Really “Dog Training for Children”? A Professional Dog Trainer Weighs In 2019 (hint: it’s worse)
- Autism FAQ via Autistic Hoya 2013 (refers to outdated DSM-IV dx categories, but otherwise quite relevant still)
- Build up to a Meltdown… and Burnout… and CPTSD… ZeroWrites blog 2022
- “Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”: Defining Autistic Burnout 2020 Raymaker, Teo, Steckler et al
- Autism – some vital research links by Dr. Ann Memmott 2019
- I’m Autistic. Here’s What I’d Like You To Know – Ryan Boren (Boren Blog)
- How abuse mars the lives of autistic people – Emily Sohn in Spectrum News 2020
- The Six Stages of Autistic Discovery – the journey 2022 Dr. Chloe Farahar
- Ableism 101 (what is Ableism) December 12, 2019 | by Ashley Eisenmenger on Access Living
- 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.)
- Pete Wharmby’s Autistic “Thread of threads” on Twitter (account not required) describing many aspects
- (Autistic) Guest Educators – featured on Aucademy‘s blog summer 2021
- Autistic Traits are Human Traits: Depathologizing the Autistic Experience – YoSamdySam on YouTube 2021
- Function Labels: And We’re Supposed to Be the Awkward Ones – Terra Vance on The Aspergian 2018
- Why are functioning labels bad? And what does masking have to do with it? Twitter thread by @TruthAutistic March 2021
- Thread on why the terms Aspie”, “Aspergers” are white supremacist and ableist -2022 @DrHlexia (If profile is locked, this may not be visible to you if you’re not one of their followers on Twitter.)
- Additional thread on why both Asperger, the man, and the label were and are super toxic in 2021 by @GreenSnail_ (If profile is locked, this may not be visible to you if you’re not one of their followers on Twitter.)
- De-Nazifying the “DSM”: On “Asperger’s Children: The Origins of Autism in Nazi Vienna” – Dec 10, 2018 Andrew Scull via LARB
- Resources supporting preference, but importantly well-being properties, of identity-first language: we are Autistic – Aucademy Nov 2021
- Assumptions and Ableism – Amy Sequenzia on Ollie Bean
- A Black Autistic Mother Speaks Candidly About Racism, Intersectionality, and Her Fears and Hopes Around Raising Two Black Autistic Sons 2020 The Articulate Autistic
- Thread on what it means to me to be autistic by Pete Wharmby @commaficianado
- Fidgets and Fries – on being Black while autistic
- Non-Speaking Autists’ Thoughts on ABA – April 2019 Tania Malnyzcuk
- More Problems With Functioning Labels – Amy Sequenzia via Ollibean
- “We Have Autism All Wrong” – Letters from Joao, 21-year old non-verbal “severely” autistic – Andrea Libutti, MD via Huffpost 2017
- Wentworth Miller, Mental Health Stigma and Masked Autism 2021 via Medium (View of a late diagnosed queer autist)
- Reframing Autism Holly Bridges on The Art of Autism 2018
- Neuroqueer – blog by Dr. Nick Walker discussing neuroqueering
- Don’t Mourn for Us – Jim Sinclair in Our Voice November 1993
- The Other Autism – site about autism in non-cis boys and men (that is, everyone else besides cis boys and men, not just women either)
- “It’s a Spectrum” Doesn’t Mean What You Think – C. L. Lynch 2019 The Aspergian
- I Abused Children For a Living – Diary of a BirdMad Girl
- April is Ableism Awareness Month – Erin Human 2018
- Understanding the Spectrum – A Comic Strip Explanation 2017 Rebecca Burgess via The Art of Autism
- Autish: Accepting Your Late Diagnosis
- Some alternate views on Autism Speaks (updated 4/4/17) via The Caffeinated Autistic
- The Problem With Temple Grandin by Onikage on Autish
- Autistic Advocates/ Personalities other Than Grandin by Onikage
- Navigating Autism Acceptance Month and Autism Myths April 2017 Ryan Boren (<–great compilation of many resources IMHO)
- Rethinking Autism
- I’ve been diagnosed with an autism spectrum disorder. Do I tell my manger? My children? My partner? 2021 Eleanor Gordon-Smith via The Guardian
- Autistic Burnout via Tranforming Autism
- Undercover Autie’s FAQs
- The Aspergian site
- I Don’t Want Your Awareness – Amy Sequenzia via Ollibean
- 50+ Autistic People You Should Know via NOS Magazine (promoting diversity in neurodiversity)
- Autistic Primer by Erinhuman – seems to be gone, 2022 🙁
- Autism: Awareness, Acceptance, Love – Asymmetra
- Autistic Burnout and Aging – Judy Endow March 2017
- Spectrum Women
- Spectrum Suite by Samantha Craft (who also has EDS)
- Autism Strategies by Tania Melnyczuk in South Africa (a strong advocate for non-speaking autists)
- Actually Autistic Blogs List
- 100-ish Books on Autism and Neurodiversity – Not an Autism Mom 2020
- AutPress – for neurodivergent voices
- Weavers and Concluders: Two Communication Styles No One Knows Exist – 2021 Terra Vance on Neuroclastic
- Motor Difficulties in Autism by Kdo Kedar (Ido in Autismland) – and why to presume competence in non-speaking autists
- Wearable and Highly Portable AAC Ideas – Another Queer Autistic 2022
- Depathologizing Asperger’s / autism – it’s a normal healthy neurological orientation
- Throw Away The Master’s Tools: Liberating Oursleves From the Pathology Paradigm – Neurocosmopolitanism
- ‘To Siri With Love’ and the Problem With Neurodiversity Lite – Rewire 2018
- How to Identify Trauma in Autistic People – wikiHow 2021
- Dystonia Fact Sheet via the NIH (a highly co-occurring condition in EDS and autistic people)
- The Articulate Autistic – Jaime Heidel’s blog
- Project K: Preventing and Treating Sensory Overstimulation – Tania Melnyzcuk 2018
- Victimization and Perpetration Experiences in Adults with Autism – 2018 Weiss and Fardella
- (US) Job Accommodation Network (JAN) – Autism accommodation page – 2022
- Stim Your Heart Out – a project to normalize public stimming by Prue Stevenson
- Neurotypicals Don’t Juggle Chainsaws – podcast by two ND creators
- The AuDHD Burnout to Psychosis Cycle: A personal experience by David Gray-Hammond (Emergent Divergence)
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.
On the Co-occurrence of HSD, EDS and MCAD with Autism and More
- Bendy joints, stretchy skin, clumsiness. Why hypermobile Ehlers-Danlos Syndrome is often missed – and what it has to do with autism March 2023 Marie Claire Seeley via The Conversation
- 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
- Joint Hypermobility Links Neurodivergence to Dysautonomia and Pain Feb 2022 Csecs, Iodice, Rae et al (includes Dr. Eccles) Frontiers in Psychology
- Mast cell-mediated neuroinflammation may have a role in attention deficit hyperactivity disorder (Review) 2020 Song, Lu, Huan et al
- Researchers have identified a relationship between Ehlers-Danlos Syndrome and Autism – Casanova, E via Autism Research Institute 2020
- Video: Hypermobility and Neurodiversity 2020 By Dr. Jessica Eccles (@BendyBrain on Twitter)
- High functioning autistic disorder with Ehlers-Danlos Syndrome 2011
- Ehlers-Danlos Syndrome and Autism Dr. Manuel Casanova 2013
- Chiari malformation I and autism spectrum disorder: an underrecognized coexistence 2015 Jayarao, Sohl, Tanaka
- MCAD linked to autism by Dr. Theoharis Theoharides 2015
- Autism in the Son of a Woman With Mitochondrial Myopathy and Dysautonomia: a Case Report 2015
- Neurological manifestations of inherited disorders of connective tissue 2014
- Nationwide population-based cohort study of psychiatric disorders in individuals with Ehlers–Danlos syndrome or hypermobility syndrome and their siblings 2016 BMC Psychiatry Martin Cederlöf, Henrik Larsson, Paul Lichtenstein, Catarina Almqvist, Eva Serlachius & Jonas F. Ludvigsson (mentions autism too)
- Joint hypermobility and autonomic hyperactivity: relevance to neurodevelopmental disorders 2014 Eccless, Iodice et al
- RCCX Hypothesis of complex polymorbidity and the stress-diatheses 2016
- ESSENCE meets connective tissue disorders? 2016 (blog) talking about how:
- A connective tissue disorder may underlie ESSENCE problems in childhood 2016 Baeza-Velasco, Grahame, Bravo
- Autism and anxiety disorder: zooming in on the details March 2017
- Autism and Ehlers-Danlos Syndrome (EDS) – 12 Management tips – Linda Wemyss via Spectrum Women 2017
- Learning, as an adult woman, you have autism (and EDS) – via CNN April 2017
- Groundbreaking Research Links Autism with Histamine, Inflammation and Mast Cell Activation – 2017 (based on 2013 info) via Wake Up World
- Generalized joint hypermobility and neurodevelopmental traits in a non-clinical adult population 2017 Glans, Bierot, Humble
- A Cohort Study Comparing Women with Autism Spectrum Disorder with and without Generalized Joint Hypermobility 2018 – Casanova, Sharp, Edelson et al – Behavioral Sciences
- Chronic Pain in Adolescents and Alexithymia – March 2018 May, Brandon, Clinical Pain Advisor
- Blog by another autist with EDS (Rural Tea Cake)
- Autism, Joint Hypermobility-Related Disorders and Pain 2018
Carolina Baeza-Velasco, David Cohen, […], and Vincent Guinchat - Autism and EDS/HSD studies collected by Nerdy Zebra January 2019
- Resources for Medical Doctors (treating autistic patients) – Marie Camin, PhD
- Can Autism Affect Eyesight? How a New Understanding of Vision Could Change How We See the Spectrum – August 2021 James Sinclair (Me Jan: I’m including this down here because of the high overlap between hypermobility spectrum disorders/EDS/ other Connective Tissue Disorders which lend to vision problem for physical reasons, and autism. This article brings up a few that our doctors may not ever “solve” or be able to.)
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:
- Health Disparities Among Gender and Sexual Minorities with Autism Spectrum Disorder 2020 Hall, Batza, Streed Jr et al
- Neurodiversenby – site about the intersection of neurodiversity and gender variations
- Neurodivergent Queer Identities – KBOO fm Portland, Oregon 2019
- Neuroqueer blog by Dr. Nick Walker discussing neuroqueering
- Sharing My Trans Origin Story for Transgender Awareness Week – Neurodivergent Rebel 2021
- Autism in Girls – I Was Wrong – Yo Samdy Sam on YouTube 2021
- “When You’re Black and Trans, There are No Safe Spaces – Dahlia St. Knives 2020 via Alma
- Wentworth Miller, Mental Health Stigma, and Masked Autism – 2021 Dr. Devon Price via Medium
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:
- Why many women with autism and ADHD aren’t diagnosed until adulthood – and what to do if you think you’re one of them – April 2022 Alokananda Rudra Durham University via The Conversation (CW: this article stills feels biased and sexist to me.)
- Autism Screening Tools Excluding Women, Study Finds 2022
- ‘We weren’t visible’: Growing awareness leads more women to autism diagnosis 2021 The Guardian
- How different are girls and boys above and below the diagnostic threshold for autism spectrum disorders? 2012 Dworzynksi, Ronald et al
- ‘I understand exactly who he is’: Moms discover they share autism with their children 2019 Isabel Dias June 11 Washington Post
Females and Autism / Asperger’s – a Checklist –Samantha Craft (pre 2022)- Better: Samantha Craft’s (no longer gendered) Autistic Traits Checklist (2022)
- Autism – It’s Different in Girls 2016 Scientific American
- Autistic Women and Non-binary Network
- Aspienwomen: Moving towards an adult female profile of Autism/Asperger Syndrome
- Girls and Autism: Flying Under the Radar (nasen UK)
- Why Autism Goes Unseen in Girls and How To Spot It 2019 Sarah Jane Critchley via Teachwire
- The Other Autism – site dedicated to autism in girls, women, femmes
- Master List of Books with Female Autistic Characters by Starr Green
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
- Girls and Autism: Flying Under the Radar (nasen UK)
- The misnomer of ‘high functioning autism’: Intelligence is an imprecise predictor of functional abilities at diagnosis 2019 Alvares, Bebbington, Cleary et al
- Not an Autism Mom
- Chronically Capable – a site for disabled people seeking work, and employers willing to accommodate them
- All Cats Are on The Autism Spectrum – video of the book being read, includes some outdated stereotypes from a male POV
- Autism Community Training Canada
- Autistic Women and Non-binary Network
- What is Asperger’s? A long answer to a short question
- The Picture Exchange Communication System (PECS) – helps non-verbal autists to communicate
- Questioning Answers – by a PhD seeking answers (some may find ableist)
- Career Assistance For People With Autism
- Gender is a Social Construct – for those seeking insight into gender diversity for all
- Guide to Aquatic Therapy for Children With Autism
- Guide to Living With Sensory Overload
- Autism Nutrition Research Center – led by James Adams PhD
- Pathological Demand Avoidance (Extreme Demand Avoidance)
- Kilee Patchell-Evans Autism Research Center
- Reframe Your Thinking Around Autism: The Polyvagal Theory and Brain Plasticity
- The Thyroid-Autism Connection via the Kellman Center
- Spectrum Suite by Samantha Craft (who also has EDS)
- Reduce the Noise: Helping Loved Ones with Sensory Overload Enjoy Shopping
- Dental visits for children with autism
- Dr. A J Russo’s site on the link between nutrition, metabolism and neuro-behavior
- Aspienwomen: Moving towards an adult female profile of Autism/Asperger Syndrome (also mentions EDS connection FTW)
- Autism: The spiritual approach to intervention by Sandra Alexander
- High functioning autism and borderline personality disorder
- Integrated Listening Systems – a multisensory program for improving brain function
- Help ruling out PANDAS and PANS (you can have both autism AND PANDAS but some are misdiagnosed)
- The Emotional Blindness of Alexithymia – Scientific American 2014 (trouble reading your own or other’s emotions? Putting your feelings into words?)
- Women with autism hide complex struggles behind masks – Spectrum News 2016
- Towards sex and gender informed autism research 2017
- Social Camouflaging in Adults with Autism 2017 Hull, Petrides, Allison et al
- Depathologizing Asperger’s / autism – it’s a normal healthy neurological orientation
- Our autistic family’s approach to therapy (neurodivergent paradigm)
- 10 “Autism intervetions” for families embracing the neurodivergent paradigm
- About Mitochondrial Diseases via Mito Action (a common comorbidity)
- 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:
- Books on hypermobility, EDS and MCAD
- Helpful Gadgets
- EDS Support Groups
- MCAD Resources
- Mental Health Resources
- Dysautonomia Resources (POTS too)
- EDS Resources
- Related Research