I never expected to be delving into the incredibly deep and complex world of autism 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. (Ignorance was bliss, lucky me.) That said, I always struggled to fit in, and battled many of the common comorbidities along the way, as I tried to pass for a “neurotypical”. 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 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 comorbid with connective tissue disorders involving hypermobility, and also Mast Cell Activation Diseases. 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 the community still refers to it, so I do too.)
I now consider myself a likely “Hidden Aspie” or autistic cousin, but realize this is not an official diagnosis, and some will take issue with that. I will stick to my conclusion however, as the description of Asperger’s resonates extremely deeply with me, and I’m also aware of my entire family history, and you are not. I’m also getting NO support thank you very much, so trust me, I’m not taking anything away from anybody. Nay, I could use some in fact.
Further, I found it extremely commonly comorbid in the EDS & MCAD support groups I landed in, both on and off line, and continue to the longer I observe the groups. (One has over 12,000 members in it alone, so a decent sample size.) Everyone seemed to be either on, living with, or related to someone on the autism spectrum , or showed subclinical signs as I had. 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 so-called “high-functioning” (essentially, verbal) autism doesn’t either. I find this latter often alternatively (and likely mis-) diagnosed as any combination of the “Subclinical Alphabet Soup” I find of: ADD, ADHD, SPD, OCD, BPD, NPD, depression and anxiety among other things. However, I will focus on those resources relating to neurodiversity 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 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 EDS and wondering whether to suspect it, you might check out this page. And see this page to suspect comorbid MCAD.
Please note the list below does not constitute endorsement of any particular view or treatment, nor am I espousing a “cure” for autism now. I’m seeing arguments on both sides for both “recovering” children via nutritional therapy and support, and “backing off”, at least with forced behavioral therapies. As I’m so new to this world, I’ve been sort of receiving a crash course and having to madly catch up with the latest in thinking, and have found a very confusing array of sources to sort through, all purported “experts”, autistic and otherwise.
Since some autists I follow on Twitter trigger to the word “recover” or “recovery”, and almost all to the word “cure”, I am omitting a couple of well known sources and sites accordingly. I admit to following the better known names and louder voices at the start and thus getting a view biased toward curing and compliance – who could blame me? Thankfully Twitter is introducing me to many minority voices who also deserve to be heard, and I’m appreciating learning from. (And slowly adding below.)
I am slowly but finally recognizing the need to give autistic persons increasing autonomy and agency over their bodies and minds, just as we all want. Dogs don’t bark for no reason – we don’t stim/cry/melt down/bang/sing/want to spend time alone etc. for no reason either. I’m increasingly convinced in 2017 that a stance of following and observing more than pounding into compliance (for all kids) results in better outcomes for all, including exhausted parents.
I’m now focusing on the words “support” and “acceptance” more than “awareness” (which seems to imply a pathology) accordingly. As someone in my group just pointed out, neuro-diversity is really also just a trait, like hypermobility or red hair color. Let’s start loving and accepting each other in all of our various beautiful human forms and styles. Thanks 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.
Best wishes to all.
General autism information and support
- Are you a Hidden Aspie?
- Girls and Autism: Flying Under the Radar (nasen UK)
- What is Asperger’s? A long answer to a short question
- Autism Resources Site (by a parent of an autistic son)
- Career Assistance For People With Autism
- If not ABA, Then What? – Sparrow Jones author of excellent blog Unstrange Mind
- AutPress – for neurodivergent voices
- Autism Society
- Caring For Our Kids
- Autism Society of Oregon
- Guide to Aquatic Therapy for Children With Autism
- Autism Nutrition Research Center – led by James Adams PhD
- ASU Autism/Aspergers Research Program
- Center for Autism
- Age of Autism
- Peirson Center for Children (Portland, OR)
- Dr. Tony Attwood’s Site (Australian psychologist and author)
- Healing Without Hurting
- Heart Full Healing (NMT)
- Brain Balance Centers – under Dr. Robert Melillo (See “Disconnected Kids”)
- 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
- Seriously Not Boring
- Spectrum Suite by Samantha Craft (also has EDS)
- Reduce the Noise: Helping Love Ones with Sensory Overload Enjoy Shopping
- Estate Planning for Parents of Children with Autism
- Dr. A J Russo’s site on the link between nutrition, metabolism and neuro-behavior
- Understanding the behavioral problems associated with high-functioning autism – My Aspergers Child site
- Aspienwomen: Moving towards an adult female profile of Autism/Asperger Syndrome (also mentions EDS connection FTW)
- Autistic Burnout and Aging – Judy Endow March 2017
- 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?)
- 50+ Autistic People You Should Know via NOS Magazine (promoting diversity in neurodiversity)
- Some alternate views on Autism Speaks (updated 4/4/17) via The Caffeinated Autistic
- I Don’t Want Your Awareness – Amy Sequenzia via Ollibaean
- Autism: Awareness, Acceptance, Love – Asymmetra
- Ollibean – site for disability rights, inclusion and neurodiversity
Check out the hashtags #RedInstead #NOTmssng on Twitter for “awareness”
On the Comorbidity of EDS with Autism and many DSM-V diagnoses
- High functioning autistic disorder with Ehlers-Danlos Syndrome 2011
- Ehlers-Danlos Syndrome and Autism Dr. Manuel Casanova 2013
- 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
- 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)
- 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
Google will net you many many more resources on autism and related/comorbid disorders (ADD, ADHD, OCD, depression, anxiety). Please send suggestions and q’s to: firstname.lastname@example.org thanks. Or use the contact form provided in the menu.
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