When 53 is the average age of mortality for autistics, that makes all of the mid-20s burnouts and meltdowns mid-life crises.

When I turned nineteen, I was weeks into my second term in college, and, as in the first term, was back to working in the library until the sun came up multiple times a week. My workload was unmanageable, and trying to keep up was affecting my health. I felt more and more like my effort was in vain, and that my life direction was misguided.

To top it off, I was now half the age my mother was when she died, and I was the same age as she was when she conceived my oldest biological sibling. At my very age she was embarking on the confusing, messy business of parenthood, unaware that her life was half over.

I knew this though – that her life had been half over – and it highlighted how little I knew of the future, and the unsustainability of the present. It was a mid-life crisis, and I had recognized it as such, there in the library as the morning neared. I decided to drop the advanced elective that had held me to the fire for weeks. It did lighten the work load, but it didn’t save me much sleep in the long run.

Since then, I have changed homes, schools, lost 70 pounds even. And I also now know that I’m on the autism spectrum. Where I had understood Asperger’s Syndrome to mean being “socially awkward and intelligent”, I now understand that the sensory processing challenges, executive functioning deficits, and mind-blindness that have affected me all fall within the autism heading as well, and being aware of these as problems has allowed me to work with tools to address them, much to my own sense of well-being. My ability to kick over my head, limber stretching, and the excessive degree to which I lean on my surroundings for support I now know to be a result of ‘low tone’, a common trait in autism. Neuroscience research in autism mouse models have further connected impaired motor coordination to an altered synaptic baseline of activation, making it initially more challenging to encode new motor programs in the cerebellum; while I had not heard of low tone yet when I read this research article, I was able to think of the results with respect to my own experiences.

It has now been year since I became publicly open about being on the autism spectrum, and in this past year autism research has uncovered more and more about the long-term outcome for the lives of autistics, from co-morbid health conditions to the job and housing crisis developing for my own age cohort – the autistics diagnosed and given support as children, who are now aging out of those support programs as adults. And in this same year, autistics have been harassed in schools, abused or murdered by parents, and others killed by police during high-stress induced meltdowns. I have meltdowns, and it is scary to think of the danger that armed officers might be to me, lacking training to recognize and act in this context. I have an app now in case I find myself unable to speak in an emergency situation, given the willingness of the other person.

Knowing I am autistic does not protect me from these realities, but I would rather know that I am autistic, and be aware of these things, and try my best to do a little good for someone else that felt like an outsider growing up, impassioned yet disconnected. As I read about the experiences shared by other autistics online, in journals, books and more, about various stages of growth, coping with stress, and burning out, and much else, I am able to feel a sense of camaraderie with total strangers who bear more in common with me than blood relatives or anyone I ever was in class with.

In a world where the pressures of performing, interacting, and doing ‘normal’ things drive some to the absolute edge, it is unsurprising that other autistics are experiencing this by the early 20s, whether on their own for the first time, trying to find work and maintain employment, to feed themselves, or while dealing with significant sensory challenges and executive function impairments.

While it may have been absurd to be experiencing what felt like a mid-life crisis at 19 because of the age at which my mother died, the life expectancy of autistics has recently been found to be 54 years old, compared to the US average of 78.7. I guess that makes the burnout of autistics in their 20s a lot more like mid-life crises.

When 53 is the average age of mortality for autistics, that makes all of the mid-20s burnouts and meltdowns mid-life crises.

ESTRANGEMENT and your role in it

About a year ago I went to a group therapy intensive program, which met four days a week, for two-hour sessions. It was a big group; maybe fifteen of us, and one moderator/counselor.

In the takeaway, the one piece of lasting knowledge that I got at group was which brand of eye drops I should be buying (a lot of anxious people have dry eyes). I left the sessions exhausted, and did not complete the entire eighteen-session course. It did leave me, however, in a good part of town to do Easter basket shopping, which is what my aesthetic brain remembers most about the experience. If I think about “the time I went to group therapy”, I picture buying jellybean-print socks for Claude and an annoying little voice-synthesizer for Béla.

As with most talk therapy situations I have ever been part of, whether in groups or one-on-one, Al-Anon was far cheaper and more effective.

There is only one person from that group whom I remember by name, and about whose experience I can recall anything. His name was Keith. I got the impression that he had long ago lapped the eighteen-session format and was sticking around because it certainly wasn’t hurting anything. Whereas with most people in the group, the time spent in session was what I imagined to be their least “normal” time of day — the time when they did not have to “pass” or hold themselves together — for Keith, I imagined it was the reverse. While others were drying their tears and using their eye drops to try to go back to work or to take care of their kids, Keith was very open about the fact that group was the most structured time of his day, and even of his week. While some people talked openly about their clinical diagnoses, I can’t remember any particular label that defined Keith, but rather a hybrid of organic mental health issues, current medications for those issues which impacted his thinking and behaviors (he drooled, a lot, and only noticed it long after the rest of us had), and over a decade of serious drug abuse that had altered not only his ways and abilities, but his few remaining relationships.

He lived with his father. Independent living did not seem to be anywhere in the forseeable future. Although I had come in late to Keith’s story, he seemed to have no illusions about the fact that he was lucky to be living with his dad at all, however uncomfortable it might be for both of them, and however constraining. Keith had recently completed a six-week volunteer program with a local museum, and this had been successful, but he was casting about for more connections in a world where he wanted to make amends, and make a new life, with permanent, positive ties.

He was the Cosmo Kramer of the group, and said things that made the whole room laugh. When it was suggested that we have an evening session where our family members were invited as well, Keith was very enthusiastic. “Yeah!” he yelled. “Free food!”

“Nobody said anything about the center providing food,” the moderator pointed out.

“Then I’ll bring it!” Keith said joyfully.

There is one example of Keith’s sharing during group that has stuck with me so much over the past year that I can’t even really believe it’s only been a year since I first heard it. I have replayed it in my head that many times. Keith “went first” that morning in session, and he was not as buoyant as he often was. “I called my brother last night,” he said. “And I said to him, ‘I miss you so much, I just want to go to a hockey game with you. I want to see your sons, my nephews, and just watch a hockey game and have a good time.’

“And my brother said, ‘Keith, you fucked up so many years of my life, so many years of my kids’ lives, I have no idea if I’ll ever want to be in a room with you much less go to a hockey game with you, or have you see my kids,'” Keith reported.

Everyone in the room winced. There was nothing about Keith’s delayed affect that hid what a blow this had been to him, even though it seemed likely that this was not the first time this conversation had happened. “So,” he said. “I guess I’ll ask again, sometime.”

The group spent some time with this — after all, this wasn’t Al-Anon, where the rule of “no cross-talking” is enforced and no one may comment directly on anything anyone else says. In this group, lots of opinions and similar experiences (and eye drop recommendations) were offered. In the group’s post-mortem of Keith’s conversation with his brother, I witnessed more intimately than I ever had before the POV of the estranged family member who understood that a necessary step to ever building a bridge back to his family member meant understanding and accepting why that person did not want them in their lives, and did not need to give a promise date of when they would.

The only other place I had seen this kind of clarity was Al-Anon, where it was not uncommon to have an alcoholic guest speaker who, whether a year or twenty years sober, could sit with a smile on their face saying “I’m happy to be alive, and I would love to be able to have a conversation with my kid, but I understand why they wouldn’t want to and know I have no control over that.” These people, like Keith, had made an honest, accurate assessment of the damage they themselves had done, and recognized that it was bad enough that they did not want to subject their loved ones to the stress, the reminder, the possibility of it again.

It doesn’t always go this way. At home, we have seen — and we are pulling from three totally disconnected pools of dysfunction here — “I know that you don’t want to see me, but I want to see you, so come (to the place I am naming).” I’m not sure how a person gets to the point where they think that might work — or if it has worked, how they have rated their feeling of success after having procured what they wanted — but it really. Just. Doesn’t. Work. Keith, with one of the haziest minds I had ever seen in action, understood that he could never have what he wanted for himself — being at a hockey game with his brother and nephews — if, at the very least, his brother did not want it as well. Keith understood that trading meth for whatever prescriptions he was taking to keep his mental illness in check, and trying to keep busy, and live a productive life, did not count as free market currency and could not be traded in for time with his brother where years as a destructive force in the lives of his entire family suddenly disappeared and it was time to enjoy arena sports. Keith was honest about what he wanted, and had clarity in that what he was asking for was minimized — he probably wanted a lot more than just a hockey game — and was trying to ask for pretty neutral ground.

And he knew he wasn’t even owed that. His own recovery did not earn him a piece of anyone else’s. Who knows how many group or private therapy or twelve step sessions Keith’s brother had also sat through?

Around the time we adopted Béla, I had a one-on-one therapist I really liked. He was an unconventional therapist, so much so that my time with him ended abruptly only because he had lost his license to practice temporarily (I never found out why). His personal counseling was only part of what he did, and most of his time was spent doing family mediation with kids in the welfare and foster care systems, and (oddly, in retrospect), working with families who had children with Asperger’s Syndrome. He was the first person I ever heard use the term “Aspie”, which, coming from him, sounded rather rogue. He was helpful to me in understanding some of my dad’s inability to be a nurturing source for me — “THE WIRE MONKEY!!” I remember him shouting — and how it contributed to my own hypervigilance. He also tuned me in to the idea of restructuring relationships so that the labels they possess, and which they can never live up to, do not create a zero-sum game.

If he had a kid whose dad was a deadbeat who only showed up for three out of ten of their court-approved visits together, and the kid still wanted these visits to happen, one way to make them less disappointing was to reframe the relationship entirely. “This person is not capable of being a father to you; however, he can be a guy that you see from time to time, and have lunch with.”

If the kid could accept this — the permanent loss of having any expectations of this person as a “parent”, but could find a way to value the time with the person by thinking of them in terms of the actions they were capable of rather than of those that they weren’t — a good thing had happened. However, in these situations, both parties don’t have to agree to this change in terms. If the father in question was asked to consent to this change in expectations and said “I refuse to be seen as anything but a father! I demand to be invited to and be expected at all school concerts and recitals!” and still kept not showing up, absolutely nothing is gained — except a dysfunctional person is, again, somehow led to believe that their idea of how the world should work is the one that matters.

And with people like that, how things are seen — rather than the quality of private interaction with their loved one — carries a lot of weight. When a person makes life hard for someone they love, and that person changes their expectations of the relationship — when a loved one says “I am not asking you to stop drinking, but I would like to spend time with you only when you are sober, such as the time between when you finish work and go to the bar” — and the person in question treats this as an insult, rather than possibly the most loving thing anyone has cared to say to them in decades — they are worrying a lot more about managing public expectations than they are about having time of value with someone.

And, it is people who spend a lot of time and energy trying to manage public expectations, I have noticed, for whom the public’s expectations have long been formed. Nobody bothers the person with the reality of them anymore, because that’s never gone well. When you fail to conform to this kind of person’s code, their parry is, usually, to “punish” you — with less, or more difficult contact. You love me enough to no longer be able to stand seeing me drunk? Well fuck you then — I’ll consider that an act of aggression and refuse you that contact, and will further limit our contact to curt electronic communication.

That’ll teach them.

Be careful, when “punishing” your loved ones with the absence of you, that you aren’t clarifying just how much better life goes for them when you’re not in it.

This is what made Keith such a hero to me. He had no euphemisms for what he had been in his family’s lives. He was a disaster. He had cost money, years, dignity, peace, confidence, trust — he had been an enormous fuck-up, regardless of what twist of DNA had originally gotten him there. His brother did not need to reward Keith simply for not being arrested, rescued, resuscitated. His brother had his own experiences to deal with.

And I think it’s safe to assume that during Keith’s worst years, there might have been times that his brother was the one doing the offering, — of time, and attention, however modified from his original expectations of what a relationship with a brother should be like — and that it was Keith doing the rejecting.

Here’s the other thing that made Keith awesome. It was apparent when he told the story about his phone call with his brother, that it was not the first time his brother had rejected him. Not only did he have no plans to “punish” his brother for this transgression — his plan was to “ask again”. He didn’t mean the next day. He didn’t mean the next week. He didn’t plan to show up at his brother’s place of business to force him to confront the situation, or to enlist family or friends to “talk to” his brother and get him to smooth the way for him. His plan to “ask again” wasn’t a plan to try and change his brother’s point of view, but to try again to make himself available.

Because when you are the person people are trying to get away from, and you truly believe you’ve made a significant change that has a chance of stopping the damage from continuing, and possibly even repairing a relationship, it’s your job to say so. Even if all you can say is “I am here.”

Nobody in this house sits around wondering if the people nobody chooses to see have had epiphanies that have magically made them into people we are DYING to see, and we are MISSING OUT ON THE WONDERMENT. (Unless people have decided to fabricate epiphanies entirely out of spite, hoping someone will catch wind of it second hand and be oh so sorry that they did not keep calling and asking and hoping and are now wringing their hands at the thought that so much personal growth has gone on and yes, there are people I can actually picture more or less formulating an embryonic plan to do this kind of thing, but they haven’t shown much tendency to follow through on productive things, much less something this creative.)

It’s a pretty good rule of thumb: if a person can’t initiate a noncombative, nonintrusive way to express to you or show you how they’ve changed, and how far they have come — they haven’t.

And even if they feel they are helpless to change, or feel they don’t need to, but still want a way to show you that they can meet you at what they believe is the halfway mark, it really does help if they recognize that you, who aren’t asking to see them at all, do get to call the shots regarding the particulars of what may very well be a hypothetical meeting. My father, now long declared incompetent due to dementia, was officially estranged from our family when Claudia arrived. Prior to that time, I had regular contact with him for my entire adult life except for two years in my twenties, during which i managed to squeeze in a remarkable number of watershed dates — I had a close friend die of AIDS, I had another friend whom my dad had been very fond of have an unexpected pregnancy and child, and I had embarked on a truly unnecessary first marriage (which has, actually, served some purpose, in that it was so insignificant that the nine years it took of my life literally just reset when I left him, leaving me with the perpetual perspective that I am about a decade younger than I am).

I did not talk to my dad for two and a half years, and when I decided to, I sent him a letter saying I did. He sent a reply:

Dear Amber, I would very much like to see you. How, where, and when?

Dad (Drew)

I can tell bloodcurdling stories about my father. He did some truly damaging things to people, and he did them with the knowledge that he was doing them. But there were some things he did right, and that was one of them. He had been an asshole to me, and he had been abusive to me, and he had manipulated me, but he hadn’t wanted me out of his life. Because I had wanted him out of mine, the shots were now mine to call, if i wanted to call them at all.

I think it is possibly something that is clearer to adoptive parents than it may be to some biological parents (although I may also be entirely wrong about this, and it may just be clear to me, who happens to be an adoptive parent, watching the absolute wreckage of relationships of people who share genetic material), but nobody owes us anything. And in particular, our children owe us nothing. I have said it a million times in the last eight years but every hope I had for success in life has distilled down to I just want my kids to keep talking to me. They may wish I was a different kind of mother; they may eventually think of me as something other than their mother. I hope not. But the only say in it that I have is how I treat them every day. I cannot, without knowing that I am an enormous hypocrite and idiot, try to guilt them into changing their relationship with me or anyone else by telling them that “they’ve forgotten what ‘family’ means” or “they’ve forgotten who made them who they are” because no point on that vague and arbitrary compass points definitively at me. 

Which is better for navigation? Magnetic or true north? Magnetic north is always on the move. It takes some effort to follow it.

Or do you just want to follow what’s on the map, because you told everybody you had the map, and by God, IT’S A MAP — have you forgotten what maps DO? (MAPS do it — not you.)

(Please, do not think this way about maps. And if you do, don’t try to make any.)

I wonder if Keith has gotten to go to a hockey game with his brother and nephews. Maybe it did happen and it was just wretched for all of them. Maybe it went an entirely different direction, and turned out to be a family dinner that was okay, certainly better than nothing, way better than nothing, but led to no next dinner, and no hockey game, and no more acceptances to Keith’s offers. Maybe putting one shaky foot in front of the other for Keith’s brother showed him that he only had those few steps in him to take. It’s hard to make a mental picture of what it means to “wish for the best” when there is more than one person in the picture.

I don’t think anything is impossible. But I know that obligation is subjective, and very little is obligatory.

 

 

ESTRANGEMENT and your role in it