My Diagnautistic Journey
CW: Discussion of bullying, childhood emotional abuse, neglect and the larger charities and voices promoting prevention and fear of autism and curebie culture.
June, 2022: I originally intended to get this out during April 2022, for Autism Acceptance Month, but alas, life conspired to delay me again. Good news – I dodged what we thought might be COVID, while coping with several other challenges. So here we are, already in June, but I finally squeezed it out. (Never mind EDS Awareness month whizzing by in May too! Whoosh! But I tweet and post about that daily here and on social media so, every day is “EDS awareness day” for me.)
My goal of this post is not to seek pity, nor praise – no, thank you. But simply to share how one could possibly go 54 years without being diagnosed autistic, and still actually be, well, autistic! Like, I kind of get my doubters and naysayers who would question if I’m really autistic, because even without imposter syndrome (which is very real), I myself have wondered how I fell through so many cracks ALL these years!
The signs were all there, all along the way. But, in a weird twist of fate, I kept getting misdiagnosed or just plain missed for a variety of reasons I’ll share below.*
*Edited to add 9/12/22: I realize the incredible privilege of passing so well for so long, in case that’s not clear below. I’m increasingly trying to go to bat for those who can’t or don’t pass at all, or much less easily. I’m still learning how to be a better ally and advocate to us all. And I do NOT consider myself any kind of expert on autism, by no means, not even after all the studying I’ve done the last ten years. We are still trampling non-speakers, and I wish to own my part in that. Thank you to all my very patient teachers fostering me along.
Autism isn’t rare, the signs are there…
But first I want to thank ALL of my autistic “elders”, that is, people both physically older than me, but also those diagnosed well before me, even if they’re younger than I am chronologically. I would not be able to remotely consider writing this post without your love and support and wisdom and shared painful experience on Twitter and Facebook the last ten years.
Which has come at no small price to some of you, I know, as you fend off the attacks of those who would like to continue stigmatizing and gatekeeping autism, and calling it rare, and worse, trying to eradicate it. Thank you for paving the path of increasing recognition and acceptance for all of us. Truly. It has not been for naught. (You may have actually saved my life, no exaggeration.)
I’m also glad to understand that we don’t really need to be aware of autism so much as to promote acceptance more now. Most people have at least heard of autism now, even if they don’t understand much about it, or have a wrong idea still depending on their source. (Hint: most of the bigger charities and louder voices are not autistic-led, so are harmful to us, even if they don’t mean to be. Seek out and follow autistic-led organizations, which are fewer and smaller as yet.)
But most parents are immersed in fear of autism, and the idea it should be prevented, treated and worst of all: “cured”. (There is no cure for autism – only for some co-occurring conditions that may make you think so. Hold that thought.) We don’t need to “beware” of autism, which further promotes this fear.
And calling it “Awareness Month” also implies that it is rare, which, like EDS, it really is not. Truly. Autism is just rarely recognized in all but stereotypical CisHet white males thanks to the loudest voices in academia and medicine promoting this toxic trope, along with the largest and loudest charities. (Sound familiar? So many parallels between the two conditions and how they’re viewed by others lending to… gatekeeping.)
So what took me so long? Grab a snack and settle in, it’s a long ride…
The Great Masking begins…
For starters, I fell through the diagnostic cracks as a child in the ‘70s, because I was born into a very dysfunctional alcoholic family. Oh, my dad managed to hold down a steady job as an engineer for 40 years, but due to his likely neurodivergence in 20/20 hindsight (trust me on this), this left almost no energy for us kids or his very dysfunctional alcoholic wife upon returning home.
And he was very rigid in his evening routine, which didn’t include being a dad. (I suspect OCPD in hindsight among other things including ADHD and possibly autism, but obviously can’t diagnose him. But neither can you.) So, we were really on our own until or unless he was in the mood, which was not that often, nor very predictable. (Unless we were blue or bleeding.)
My mother, likely affected by CPTSD, Autism, ADHD and more in hindsight also was very dysregulated, and drank and smoked to self-medicate, possibly even while carrying me. She bore me to please my father, her fourth and last husband at 40 who wanted two children. (I have one older sister who is not disabled like me and was the Golden Child.) So mom sort of got overwhelmed and didn’t cope well after I hatched. She nearly burned the house down several times before I was even in gradeschool. My sister was skilled in fire suppression by the time she was ten, alas. (I had a recurring nightmare about it into my twenties I can still recall in vivid detail.)
So my mother was not much of a mom when she was around, and then she left when I was just ten when they divorced. Abandonment issues anyone? Disorganized attachment? Oh yeah, I got you right here. It only took me fifty years to figure that out with the help of the autistic community again despite years of counseling, phew! (No wonder I was depressed!)
I attended a private Catholic grade school on my dad’s insistence that was so small, it did not have any special education sections or classes. In other words, my school and class was so small (approximately 100 students across 8 grades total), the teachers had no trouble wrangling us all, and I threw myself into my studies in order to try to win their favor along with my father’s (no dice), and people-pleased and fawned to bits.
I was also the butterfly from the wrong side of the meadow, so to speak (the only poor kid in my class), so was bullied and excluded mercilessly by my classmates who all formed a mean clique without me. Two of them actually beat me up daily on the way to and from school for three years straight until 4th grade. But I’d come home to either an empty house, or mom passed out drunk on the couch. I still have scars on my shins from being kicked. Thankfully I had some nicer boys down the street to play with for a few years until another girl my age moved next door and we hit it off. But absolutely no friends at school until I switched to a public school for 8th grade.
Anyway, this fawning was a survival strategy that ended up backfiring on me as I continued to let myself be trampled by everyone, pretty much everywhere, until only recently, sadly, much to my detriment. Boy did employers love me – when they said “jump” I said “how high?” But everyone else was happy to take advantage of this trait too, I’ve noticed. (Still are, though I’m starting to finally put a stop to it. Finally. Yes, you’ve been warned!)
I was precocious, mildly hyperlexic, hyperverbal, sensitive and eager to please so I masked and passed well in school. And my parents were quite distracted otherwise. No one recognized my ADHD either because I worked so hard to please my teachers and other people (class bullies), I sort of wrangled myself into “behaving” and completing things. And was either completely ignored, or alternatively bullied into compliance by my father at home. So I “passed” there too.
My dad just sort of wished I would disappear and either completely ignored me, or decided what we would do when he wanted to. Mom was either too drunk or overwhelmed herself to notice or care, and then she was gone. And they fought regularly and violently during which my sister and I would hide in the basement until the “storm” had passed overhead. So… not much in the way of parenting for me.
The Great Masking continues…
I got into competitive synchronized swimming from ages 9-13 for reasons I can’t remember which further trained me to “perform” for everyone’s pleasure. Oh yes, jumping into cold pools for routines was a huge shock to my autistic system along with the chlorine, but it was literally, sink or swim! And also served to greatly mask my EDS – the body-wide strengthening and coordination it imbued were probably the single best remedy for a pubescent EDSer.
And again, I was trained to suck it up, buttercup, for competition. Water too cold? Keep swimming. Goggles annoying you? Keep swimming. Getting tired and hungry? Keep swimming. Longer. Harder. Faster. This probably also gave me a good outlet for my energy and frustration as a child, again helping to mask my ADHD and EDS.
Oh I got sick a lot, but no one cared to ask why. I “retired” from the sport at the ripe old age of 13 after our team disbanded. But the benefits from all that intense aquatic conditioning lingered for years for my win.
I went on to a private all girls Catholic highschool at my dad’s behest where there were similar small class sizes, and I continued to throw myself into my studies in further attempts to please my father and everyone else. Still no dice, he just drank more after my sister left and continued ignoring me. Like, wait, why are you still here? Be gone! (Love you too, dad.)
Cue suicidal depression at 16, with no one around to care, and no real functional parents.
I also stumbled on and read the book “Adult Children of Alcoholics” by Janet G. Woititz in the late 80s I think, and took a lot of it to heart, including the bullet points on the back cover, shown here:
Which read: Adult children of alcoholics…
- Guess at what normal behavior is.
- Have difficulty following a project through from beginning to end.
- Lie when it would be just as easy to tell the truth.
- Judge themselves without mercy.
- Have difficulty having fun.
- Take themselves very seriously.
- Have difficulty with intimate relationships.
- Over-react to changes over which they have no control.
- Constantly seek approval and affirmation.
- Usually feel that they are different from other people.
- Are super responsible or super irresponsible.
- Are extremely loyal, even in the face of evidence that the loyalty is undeserved.
- Are impulsive
And being super responsible me, I took that stuff to heart, and recognized many traits in myself, and decided right then and there not to do those things if I could help it. So, I was already trying to mask and pass what looks an awful lot to me like a combo of traits from ADHD, CPTSD, and BPD, which looks an awful lot like a combo of the first two to me. But I’m no authority. That’s just my unprofessional take.
Leaving the dysfunctional nest…
I sent myself to college, where I kept jumping the fence for greener grass. (Unrecognized ADHD anyone?) But with no parental or other authority figure to stop or guide me, no one noticed how much I kept jumping around schools. I just went for whatever was shiniest, until I again wrangled myself and managed to finish a BA in liberal arts after five colleges over seven years.
Not gonna lie – I’m not proud of the jumping around, but I am quite proud that I managed to even finish under the circumstances without any outside direction. Ironically, I reconnected with my mom during this time, and she ended up helping see me through the last three years for which I’m quite grateful before she died of lung cancer my senior year in 1991. I grabbed my diploma and added some additional training for medical office work to give myself some marketable skills and off I went.
No surprise, I began to have serious physical issues in the 90s as I was finishing college, that I now recognize was my EDS and MCAS acting up from stress in hindsight. But again, my issues didn’t hit the medical radar so, they were further dismissed and fobbed off as just IBS and depression. (Sensing a theme I trust!) I did get diagnosed with IBS and CFIDS back then, which you can read about here. (I was one tender point shy of enough for a fibro diagnosis, which may have been a blessing in hindsight.)
I found my niche in desktop database programming ultimately, but also found self-employment in the field extremely challenging, especially as a single female with no partner backing her. Everyone else I knew either had part or full time jobs and this was their side gig, or were married or had a partner supporting their programming habits. I was a rare lone wolf. And many took advantage of this too, no surprise. Including colleagues, ahem.
But the feast or famine nature of self-employment was just too stressful, so I survived with a mix of administrative and tech support jobs and self-employment off and on until I had one last super successful year consulting in 2011 when I started to noticeably weaken physically from the undiagnosed Ehlers-Danlos syndrome. I was 44 and no match for the effects of accumulated stress and peri-menopause as an undiagnosed autistic with MCAS, CPTSD and ADHD too, I now realize.
Autistic insight begins…
Little did I know what was coming in 2012, as my body rapidly fell apart on me in protest from so much stress of masking and passing and not passing out! This resulted in my falling down the EDS rabbit hole, and ending up leading the Oregon EDS support group from my wheelchair in 2012 despite my new arrival on the scene. (Organizing and marketing are a strong suit of mine.)
In that process, I met a lot of families individually and in groups, and noticed that everyone was either autistic, or had autistic kids. Some even asked me if I was autistic!
I was not offended in the slightest, but rather, intrigued. What made them suspect me? “You’re just like my kids!” Uhm, okay, and how is that? Pedantic nerdy little “professor” (explainer), detailed brain, info dumper, sensitive, near-sighted, literal, more.
Anyway, I tucked this away, but didn’t pursue it actively as I was too busy rebuilding the Jandroid (me) physically, and conducting my newly disabled life post “storm”. (I had to shut down two businesses, pull out my retirement savings and try to get on disability as fast as possible, all while living alone and unable to walk, so, plenty to do!)
I had also stumbled on Elaine Aron’s book and site: The Highly Sensitive Person about ten or so years earlier, and immediately recognized myself as an “HSP” in my 30s. Although when I first took her 20 question quiz, I scored only 16 or 17 if memory serves. I was off the charts (20 out of 20, and would claim more if it were possible!) after my onset cascade in 2012. I notice that cranio-cervical settling was a big influence on my sensitivity levels.
(Now I know why dad wore “transitions lenses” way back in the 80s before they were a “thing”. I’m photophobic too now. Who the hell authorized the new ungodly bright LED car headlights since 2020??? They are brighter than even our old “high beams” from the 70s!! Like, WTF!! You’re blinding me even in the daylight!! But I digress.)
There’s an increasing school of thought that Elaine has just tapped into a lot of undiagnosed well masked autism, and everyone is just missing the mark. I’m increasingly inclined to agree in 20/20 hindsight.
And ADHD enters the chat… literally!
I did notice folks tended to interrupt an awful lot in the support group meetings, like, way more than I’d ever experienced before, something I hadn’t encountered much in the workplace. (I now realize we are often filtered out or don’t make it, or are and were masking their lips off at work like me.) I didn’t recognize this to be an ADHD trait until years later, as again, I had sort of forced myself into listening well as a pathological people pleaser at school and on the job as mentioned, so wasn’t so prone to this myself. Plus, no one had clued me in to the traits of ADHD, ever. I was a cishet woman after all, and like autism, it was believed to mostly only occur in boys and men, upon whom the diagnostic criteria are all based.
I later became the support group leader for the PNW MCAD group of TMS from 2014-2017, and had a similar experience: people were either autistic, ADHD, (likely many AuDHD in hindsight), and more, as were their kids. So much so that The Mast Cell Master Dr. Theoharis Theoharides made strong note of this correlation in 2015.
So I slowly kept reading and studying all I could on the side, while focusing on my physical health and issues. I admittedly fell for some of the better known voices out of the gate – Temple Grandin, Tony Attwood, etc. And many of the pseudo science “curebies” on the web (SBC, Yasko) who claimed to treat autism through nutrition. And scientists like Stephanie Seneff, whose correlation to various causes was mighty intriguing to my pattern seeking brain – for five minutes. (Tylenol does not cause autism, which vastly pre-dates Tylenol’s development!)
The nutritional coaches are very seductive, as indeed, they can and do treat many co-occurring conditions which may help us behave in a more “typical” way, and or calm our mast cells, but they are not “curing autism”, since I now know that it is fundamentally a neurotype. It is only perceived as bad in the eyes of our carers, doctors, and the leading charities. Just as all forms of disability are too due to widespread ableism and lack of support.
No, they were and are treating many of our underlying co-occurring issues, like channelopathies and weak connective tissue, folate deficiencies and overactive mast cells lending to sensory issues, loss of speech, pain, clumsiness and more.
I.e, you may gain or regain speaking ability and be better regulated and more with some of these treatments, such that you may mask and pass well, but you are still autistic to be clear. Just less stereo-typical and better masked and maybe less stressed, so less obvious to the untrained eye.
Thank heavens for autistic Twitter! I slowly began to find better actually autistic voices to follow, and watched as they even argued with fellow pro-ABA autistics, which gave me more confidence in pursuing a diagnosis. Further, just as I was doing so, insight into the lack of recognition of autism in girls and women (and all non-cis-men ultimately like here, and here) was emerging on social media too.
This gave me the confidence to ask for a new counselor in 2021 after my prior one retired. And to ask that counselor to assess me for autism and ADHD. And to my surprise, she readily agreed! (It only took me 54 years, smile.)
Well fast forward to last summer (2021), and I was assessed as both autistic and ADHD, no surprise to anyone who’s been watching me or knows me well.
But, Jan, you didn’t have to jump as many hoops as me or pay as much, nor go to special ed, or need speech therapy, or help feeding or bathing, or speaking and making eye contact; you can’t be autistic!
This is true. And I am editing this original article on 9/12/22 to recognize my passing privilege, because you’re right. I know many who could never dream of owning their own home, much less ever passing in some work place, if they can even get to one. I did not and do not need extra help toileting, eating, writing or speaking. And this is not trivial. I want to use my platform and privilege to boost more marginalized voices, and that must include those who are diagnosed “early” as children, since this can entail loads of very painful mistreatment via ABA and more. And who rely on others to speak for them, often to their detriment.
But to other speaking and late diagnosed autistics, denying me my diagnosis is gatekeeping. I’m sorry for your traumatizing and painful diagnostic experience and journey but… yes, I sort of got lucky. If you can call 54 years of masking and trying not to pass out or kill myself, ending with severe burnout “lucky” or cheap.
Further, if, as many of you now claim, you truly do believe in the social model of disability and autism as a way of being, who says I even need a diagnosis to self-identify as autistic? Any more than a gay person needs a doctor to “diagnose” them as gay? Well…again, the Powers That Be who gate-keep resources for things like school support, OT, speech therapy, etc do.
But since I’m not a child nor in school, that’s a moot point for me. And, I suspect, folks who need to feel “special” compared to everyone else, and so refuse to share their label or status with others. (I see this a lot in both the autistic and EDS communities.) Check your egos…
But Jan, we’ve had some autistic parents come in and use their autism as a weapon to behave truly poorly at our local meetings, saying “I can’t help it, I’m autistic” when called out for harmful or shitty behavior or parenting. We don’t want just anyone on the bus! Uhm well, that is truly unfortunate, but that doesn’t make them or me any less autistic. It just makes them assholes who likely need some enlightening therapy and support themselves.
(Autism does NOT make people assholes, to be clear. Assholery is an entirely separate condition that runs across ALL neurotypes, and needs its own attention and ICD-10 code IMHO. Autistics do NOT have the market on being assholes, trust me. But nor are they exempt from being assholes either. No group is a monolith, and every group has their share of assholes. I know, I grew up with one and worked for many.)
But, you’ve been successful, held down jobs, run your own business, and owned two houses over the years – you can’t possibly be autistic! My son is autistic and doesn’t speak and still needs help toileting! I can’t even get respite care!
Listen, I get it, trust me I do – that’s also what made me doubt and question myself for so many years. And fall through the cracks. And fail to hit the diagnostic radar until I pushed to be seen in summer 2021. And this highlights where we as a society are failing parents and carers of autistic people – by not providing anywhere near enough support to your families and you.
Yes, my life is vastly different than someone with much higher support needs as you’re describing, I agree. But note, I also lost all of the above (both houses, all the jobs, my health, and more) before getting diagnosed. And I struggle to manage daily without the support I could really use but won’t be given because I seem too “functional”. So I just struggle in silence, and pretend I’m managing for your comfort while battling overwhelm and depression from same. Happy now?
But, I’m no less autistic. I’m just better passing and apparently functioning, yes. I now think that ADHD helps mask autism and vice versa in us hyper-verbal better passing types also lending to my late diagnosis. (They sort of counter-balance each other, my more rigid autism checking my impulsivity, and my impulsivity making me look less rigid. And the joys of both hyper and hypo-focus from both.)
Oh if you only knew what it took to be me and pass so well! If you could see inside my brain, and experience the absolutely shit show of executive dysfunction I battle on the daily and see my struggle to stay organized (ironically) and experience my extreme depression from all of the above, you might run screaming and deem otherwise. But do go on.
I also can’t show you my pain when you flash your bright headlights at me, and blare your exhaust and your music. Or let your dog bark or child scream and run back and forth in the hall in front of my door. And wear excess perfume or use scented dryer sheets that dump plumes of perfume into the neighborhood air. Or smoke right in front of the apartment entrance. Or startle me when I’m deep in thought at work.
This world is increasingly hostile to sensitive people. Truly. And it’s fucking exhausting. OMG Jan you just swore! You didn’t swear before! Uhm, guess what? I’m really really burned out now. So I swear now. A lot, given the chance. And will probably continue indefinitely. Hang on, let me find you some pearls to clutch.
And I have the privilege of being a well educated allo-CisHet normative white woman in the western US with all the privilege that entails. I’m not suspected of deviance. Or dating the wrong person or dressing the “wrong way”. Never followed or stopped by the police for shopping, playing or driving while Black. Not passed over for white collar jobs or turned down for loans or credit or promotions because of my skin color or appearance. And have better access to doctors than many of my Black and Brown peers, many of whom end up incarcerated either in actual jails, or in institutions because we as a racist society in the US are just not willing to recognize and support their neurodivergence and pain.
So, as long and tough as my diagnostic journey has been in its latchkey way, it still pales compared to many others. And, I’ve since recognized a majority of the houseless I’ve been serving the last three years local to me as also likely neurodivergent (primarily ADHD, but also autistic and or AuDHD like me) with all other variations on top (bipolar, borderline, anxiety, depression, more). I’m claiming them all as family now.
And most have signs of a hypermobility spectrum disorder or EDS like me too. They’ve often volunteered to me what’s ailing them and often agreed when I described my issues in a nutshell – they or their families share a lot of these traits and issues too. Some have begun faring better with this new found insight, too.
No, autism isn’t rare either, it’s also just rarely diagnosed or recognized. And highly gate-kept. And stereo-typed and stigmatized.
I know I won’t convince some of you I am autistic and may never. And I can’t convince others of you that I’m still cool. 😉 But I’ve stopped caring, or at least as much as before. I don’t have the energy.
I feel like a Rorschach Inkblot Test now – people see what they want to in me, and treat me accordingly. And sadly, that includes an awful lot of self-hate, which some project onto me, which is really toxic and tiring. (Please look in the mirror you guys!) Especially doctors.
Thankfully I’m no longer striving to people-please (fawn) nearly so much, nor care nearly so much what others think. Finally. It only took me fifty years and tons of therapy. (Which continues.)
To those worried I’m taking away any resources? Again, I’m not getting any, besides mental health counseling sometimes. And not even enough at that. Nay, I could use some. So… quit fretting. I’m sorry for your terrible diagnostic journey and subsequent mistreatment.
No one should be subjected to so much painful and objectifying scrutiny or judged so harshly just for existing autistically. Or denied services so much. Or subjected to way too much of the wrong kind. (Can you imagine going to therapy 20 or 40 hours a week ON TOP OF SCHOOL? Like, when does a kid get to just.. relax??) Nor have to nearly be a lawyer or doctor to advocate for your kids in school and the health care system. (If you do.) We really need to do better by parents so they don’t feel like torturing or even murdering their kids!
Let’s stop fighting each other, and turn that energy on our ableist oppressors, shall we? They are myriad, and we have a long way to go, even as the tide is steadily slowly turning. I will continue trying to learn to be a better ally to my non-passing peers, and champion for us all, slowly but surely.
To your health,
I relate to so much of what you described.
I love being told that I’m too smart to be disabled. As if my level of intelligence can fix my executive disfunction or my mental and physical health issues.
Thank you for sharing your experiences. I really admire your strength and perseverance, and I want you to know that I greatly appreciate how much you help other people (like me).