It’s been a very bizarre couple of weeks. The roller coaster continues, as I come down from the intensity of the AANE Women and Autism conference, and continue to think about so much that was said there. It really was a great experience, and so much great material covered. Also, it just makes it so clear, how much work there is yet to be done, to get women on the Autism / Aspergers spectrum the support they need.
I was talking to someone last night about my “diagnostic adventures” – how I self-DXed 18 years ago, and then tried to obtain a formal diagnosis 10 years later – or 8 years ago, at about this time of year. I was told by 4 different clinicians who supposedly “knew about autism”, that I couldn’t possibly be on the spectrum.
My PCP/GP/doctor just looked at me like I was delusional (at least, I think that’s what her look was about) and wrote notes in my records. She never mentioned it again, but she did say that she’d nearly diagnosed me as clinically depressed because I was so quiet — well, duh, lady, I’m studying you, trying to figure out the best way to interact with you, so I can do a passable job of building a relationship.
My psychotherapist flat-out told me I was exaggerating. According to her, her sister-in-law was an obvious Aspie, with all the attendant behavioral “tells”. I didn’t present like her at all. You don’t say… (insert sarcasm here). Hello… it’s called a spectrum for a reason… Ironically, when I met him, my therapist’s partner turned out to have the most classic textbook autism I’ve ever witnessed in someone I met in person. But according to her, he “was just ADHD” and that was that. Huh – how ’bout that.
My neuropsychologist, who was helping me with executive functioning and cognitive-behavioral issues, pulled out the standard-issue Theory of Mind argument, stating in no uncertain terms that because I could understand what others were thinking, I had empathy, and I can converse with people (be social), I didn’t fit the criteria. Augh! Clearly, he wasn’t up on the latest research. And he didn’t even bother asking any questions to clarify and dig deeper. He was so, so convinced that he had all the facts, that everything he’d read from the canon was God’s Truth, and that was that. I just didn’t know what to say. This was back in 2009, before the research about women on the spectrum started to be done in earnest, and I had no leg to stand on. So, I clammed up and we moved on. But the joke was ultimately on him, because I totally used those sessions to address my Aspie issues, without ever calling them that. Ha ha! Just try to stop me! Can’t be done.
But at the time when I was seeking a formal diagnosis, it was for a very real reason. My partner was having serious health issues, and my otherwise endearing Aspie traits were spiking wildly all over the place, leading to meltdowns and literally endangering my partner when I would “go off”. There were a number of incidents where I just lost it and wasn’t able to help and protect her, so she sustained an injury from a fall on the ice when I wasn’t able to be with her to help her balance. I just couldn’t do it. I was at the other end of the driveway, losing it. And she got hurt. She’s still suffering from that injury, and it’s been progressively disabling her. It’s a direct result of me not being able to get help at the time.
Since I couldn’t seem to get official clinical help, I reached out to a friend I thought I could trust, who I was sure would understand and be able to support me at least with morale and talking things through. My partner and I had good friend who was a therapist who also worked in student services at a top technical institution that’s renowned for its large population of students and professors on the spectrum. Actually, she was just my partner’s friend, and I was simply an accessory to their relationship — someone to cook them the meals to eat together, and help her with driving directions to our place — but I thought she was my friend, too, in my typical naively trusting Aspie manner. And when I tried to talk to her about Aspergers, she just shut me down, like the others. She considered herself an expert on Aspies, since she worked around them all day, and she told me I had “maybe a little” Aspergers (holding her thumb and forefinger close to each other). I pressed the issue, but she dismissed me.
I was past my three-strike limit, and I was out. Done. Finished with asking people for help. I’d have to figure it out for myself. I did what I could, piecing together help through sideways references and allusions, and focusing on co-occurring conditions that were easily explained by my neuropsych and doctor. The psychotherapist did a lot more harm than good, quite frankly, and I should have dropped her, but I needed someone to talk to about stuff, and she was available. So, I danced kind of close to the edge for at least a year, till — luckily — she retired and I could get free. I couldn’t do it otherwise. I was too locked-in with that dynamic. And I didn’t have the wherewithal to extract myself. Ugh.
I tried talking to another therapist, as well, but she was even more of a train wreck. She was just awful, telling me that I had to get used to a lesser life and lower expectations because of my executive functioning and behavioral issues. Augh! A whole lot of angry swears come to mind… But I’ll spare you. It’s early in my day, and I know I’m a bit worse for wear.
See, now I’m kind of in a similar situation to where I was back in 2009. My father’s medical issues have turned out to be serious, and as the eldest in my family who’s also most able to assist my parents, there’s going to be an extended period of increased demands, while my resources are not going to get any more abundant. I’m not likely to be more rested, more rich, or have more discretionary time and energy, but I’m “on point” to help my parents. So, I need to really manage my issues. I’ll be talking with doctors, navigating the medical establishment, putting things together, helping my mother figure things out, and being the representative for my other three siblings, who live half-way across the country.
If only I could get some honest-to-God help with my issues from someone who actually understands autism spectrum challenges. I did connect with a therapist who’s somewhat conversant / accepting / open about autism / Aspergers, but he’s not an Autism Support Ninja, by any stretch. Sometimes when I say things, I’m not sure he actually gets it. Or that he’s fully aware of how different it is to be a woman on the spectrum.
Honestly, I just don’t get why this has to be so. Why is autism such a mystery to so many clinicians? Especially in the Boston area, where there are so many advanced schools, as well as AANE, which has been doing education and outreach and support since about the time I self-DXed. I just don’t get it. Be they doctors or therapists or other healthcare providers, clinicians should have at the very minimum a faint familiarity with the concept that women on the autism spectrum are not anything like 8-year-old, straight, white, middle-class autistic boys. I mean, seriously. It’s just ridiculous. It’s roughly like doctors measuring the general population’s body-mass-index against that of a toddler who still has all their “baby fat”, and declaring us dangerously underweight. Maybe that’s not a great analogy, but I’m a little stretched, right now.
Seriously, people, this is sorta kinda something of a scandal. Those of us who carry the greatest burden area also some of the most vulnerable. According to the American Psychological Association:
The percentage of family or informal caregivers who are women range from 53 to 68 percent, according to the Family Caregiver Alliance. While men also provide assistance, female caregivers tend to spend more time providing care than male caregivers (21.9 versus 17.4 hours per week).
So, we spend more time, more often. At the same time, we’re usually making less money and also caring for more than one person. So, if we take time off work, the “hit” to our financial viability is greater, in terms of everyday living, as well as long-term retirement prospects. I’m taking care of my dependent spouse, as well as helping with my parents. Luckily, I’m in a job that has a lot of flexibility — and vacation time, but it still takes a toll, because I have to juggle all my commitments, change them around, disrupt my routine, and adapt to extraordinarily challenging circumstances. Everything I crave, which makes my life liveable and enables me to live effectively from day-to-day, is being disrupted, which adds yet more stress to an already demanding situation.
And I’m not the only one whose time and energy and financial resources are stretched thin. A whole lot of other autistic women do not have the flexibility I have. If they take time off work, they can lose their jobs. Or get their pay docked. Women typically have fewer resources — and less support — and yet, we get a disproportionately larger share of the “excitement”. Especially autistic women.
How is this fair? And it doesn’t just affect us, but others we’re supporting and helping — which is — ahem — lots of people around us, family or otherwise.
We hold things together, we women do. At home. At work. In the world. Yes, even us Aspie gals, hiding well out of sight, plugging along in our jobs and our home lives, treading water in the stormy seas of “how stuff goes”. But who’s helping us hold it together? Especially women on the spectrum. I mean, seriously people. How is this not a top health priority — especially with all these autism researchers? What does it take to illustrate the inequity and disproportionate burden? Infographics? The validation of some high-ranking straight, white male authority figure? Or maybe a news article about a tweet. That seems to happen with alarming frequency.
I guess I just need to hack into Trump’s Twitter account and tweet out my concerns — then every single news outlet on the planet will enthusiastically jump all over it! Woo hoo! It’s an idea…
But back to the real world. The situation of ageing autistic women just sucks on so many levels. Think about it — women live longer, we end up being caretakers for ailing parents far more often than our male siblings, and since women on the spectrum can also be incredibly good in a crisis, that makes us the natural pick for running interference in tough situations. Thanks to my alexithymia (which passes for level-headedness), I volunteer for the most emotionally draining situations, because somebody has to do it, but my siblings are scattered to the four directions (and/or crying in the corner).
At what point do I get some support? Or any of the other autistic women who are working overtime to support others, for that matter? Why can I not just walk into a doctor’s or a therapist’s office, tell them I’m autistic, and have them adjust their approach accordingly? Why do I get shot down, if I disclose? Why do I have to hide the fact of my challenges, for fear that I’ll be considered less-than… less competent… less capable… less intelligent… less compliant? Why does an autism disclosure make me suspect? Why is lacking care for autistic women even an issue, in this day and age?
Why is there is such a dearth of understanding in the healthcare community about women on the spectrum? We should simply be able to show up, state our situation, and get the appropriate accommodations that will do more than allow us not be overwhelmed — the simplest accommodations could actually help us be our best, most brilliant selves.
Maybe I’m missing something, but it seems that it just makes sense for clinicians to screen for autism first, because it really creates a substrate of foundational issues, which then give rise to any number of other intensified complications. I don’t consider autism a “co-morbid condition” because I don’t consider it a malady. It’s a contributing factor that creates conditions that intensify a range of issues in their own special way. Things start to make a lot more sense, if you treat the autism spectrum as a core component of someone’s personality and character, just as you would treat ethnicity, gender, or class — Oh, wait — those core components aren’t factored in, either, a lot of times.
Silly me. What was I thinking?
Basically, if you’re not a straight, white, middle-class male who’s conversant in medical terminology or understands the dynamics of patriarchal model patient-doctor interactions, it seems to me that you’re all set.
The rest of us though? Yeah, good luck with that.
But still, I cannot for the life of me understand why this is the case in the Boston area. It’s not like we’re living under a rock, here. In my parents’ rural area, where I grew up, yeah, I get the lack of awareness. That’s understandable. I’d expect them to be at least 20-30 years behind this metropolitan area. But here?! In a globally recognized center of education and medical advances?! It just flabbergasts this Aspie. And I’m sure it does many others, as well.
And it sucks bilgewater on days like today, to live in a world that’s structured around/for/by/because of such restrictive, unimaginative, under-exposed, not-fit-for-service neurotypical norms. Especially with a mind like mine, which craves logic almost as much as it does glucose and oxygen. The dearth of logic might be causing me the most distress of all, quite frankly.
It’s got to change. It can change. Somebody just needs to make a priority of it.
Because we autistic women (and non-standard-presenting autistic men / nonbinary folks) matter. We matter so very, very much — and not only to ourselves, but to everyone around us who’s connected and depends on us. Everybody.
Okay. Enough. I’ve got to eat something. It’s going to be a long day.