withasmoothroundstone:

autisticpgh:

Mental health diagnosis and treatment has evolved over time according to what makes sense and what works for most people. We have an increasing…

I am… not sure it actually goes by what makes sense and what works for most people.  It’s also dangerous to assume that either the psychiatric system in general or individual people in the field in particular are benevolent.  And even when the individual people are benevolent enough, it doesn’t guarantee that their actions as guided by psychiatric ideas are going to be benevolent.  This includes when the individual people are themselves or have been at some point diagnosed or treated by psychiatry.  (In some cases that can actually make it worse, but it depends heavily on the situation.)

Like, everything said would make sense if psychiatry were reliably scientific and medical, and reliably more aware of the pitfalls of its own power systems.  But it’s not actually guaranteed to be any of those things, certainly not reliably even when it is.  And in many cases it’s most of the system that has a problem, not just bad apples.  (Bad apples just make it even worse than it already is.)

I’m in therapy, so obviously I don’t think people shouldn’t use whatever part of the system is actually useful to them.  I’m also very lucky:  It takes an extremely good therapist with extremely good self-awareness and awareness of the pitfalls of the system they’re a part of, to manage to function in a mostly-benevolent way for clients.  Like, it doesn’t take just an average person with decent intentions, it takes someone with more skills and awareness in certain areas than most people are going to have.  Or else it takes someone who manages to function in helpful and mostly harmless ways in the area that you need help, and who doesn’t step over certain lines that are way too easy to step over, and you have a backup plan for what to do if the person does step over those lines.  I’ve had therapists on and off since I was seven, and all of them until this one ranged from terrible to well-meaning but kind of useless to me.  And it wasn’t usually my situation that was the issue, it was them. As in, it wasn’t that I was autistic that was the problem, it did cause additional problems, but it wasn’t the reason that what they were doing didn’t work, most of the time what they did wouldn’t be very good for anyone.  

My current therapist is good because she’s basically like paying someone to listen to you and give you advice based on an outside perspective on your actions.  So we talk and she tells me if she thinks something I’m doing is making things worse or best done in some other way.  And then I can take or leave her advice and she has never pressured or coerced me to do or believe anything.  Plus since I’m an adult I can walk out of there any time, and I’m not in situations where she’d be mandated by law to report things I’m saying – abuse I talk about has long since been reported, and I’m neither a danger to anyone nor easily mistaken for a danger to anyone.  So I long ago decided if she caused problems for me that I didn’t think were solvable, I’d just leave.  And she’s not the type to lie about you.  (Like some will if they want you forced into inpatient facilities and can’t find a real reason you’re a “danger to self or others”.  Some are not above making something up because it’s your word against theirs.  She’s not like that.)

I actually started seeing her after my dad died, but kept seeing her specifically because she gives such useful advice on such a range of areas, and on occasion can actually teach me tricks or techniques for managing emotions.  She periodically stops me and we talk to make sure there’s an actual reason for me to keep seeing her.  

Which is great – I’ve had therapists before where I was not being helped or was being harmed but they tried underhanded crap to keep me coming in so they’d get paid.  One of them actually threw a tantrum when I decided to stop seeing him.  Another followed me to my mom’s car and tried to wedge her way in the door to try to talk me into coming back.  Both of those predicted I would die without them.  The second one also said I’d die if I didn’t join a cult, which is why I told her this was my last session.  I was finally an adult and could do that.

Which reminds me I’ve had two separate therapists who broke confidentiality while I was an adult and told my parents things about me or held lengthy discussions with my parents when I was over 18 and had signed no releases of information for anyone.  Both normally worked with children and had apparently decided since they’d both known me in childhood they could keep on behaving in this manner. One of them even told me I wasn’t an adult and never would because I was in the system and that he would have ultimate say over all my decisions through manipulating my parents.  He’s the one who threw a tantrum on the phone when my parents told him I was through with him and wouldn’t listen to his attempts to talk them into making that decision for me as well.

So… er… yeah.  This article would make sense if more of therapy and psychiatric diagnosis in general made sense and was as benign as it claims to be.  As it is, it’s useful information, but even all of this isn’t sufficient in a world where psychiatry is mostly not governed by what makes sense or what works and can be dangerous to both autistic and nonautistic people.  Even when all people involved mean well, which is not always the case.

Interestingly, while my therapist is aware I’m autistic, it really hasn’t come up as a big deal in therapy.  I don’t know that she does anything different for me.  I am sure it can be very useful to know in some situations, including this one, but it has been weirdly irrelevant with us most of the time. I don’t get the sense she’s altering things for me at all, at least not with autism-specific stuff in mind.  The advice she gives would probably be good advice for anyone.

OTOH the guy who diagnosed me, he meant well, and he was a cousin himself, but holy crap some of the stuff he tried didn’t work.  Like he recognized better than most people the massive disconnect that existed most of the time between me and language comprehension.  But one of the ways he handled this was to tell me the Helen Keller at the water pump story.  Not just once but nearly every time we met.  And when it wasn’t that story, it was stories about patients he’d had in the past, most of whom were autistic but some won’t, and he’d always tell stories about the moment they grasped what language was for.  And he didn’t seem aware that telling me all this using language wasn’t going to cross the comprehension gap at all.  And he also misused power even when he wasn’t trying to.  I totally trust his intentions, and he would stick his neck out if he noticed others in his profession or at his workplace treating us badly, but he also made decisions that were terrible and sometimes dangerous and were not just random bad decisions but were guided heavily by the power structures of his job.  

He did a lot in terms of recognizing what was going on with me, advocating for me if he saw abuse happening (which was a big if), and figuring out things about me that nobody else had ever understood, but when it came to anything that falls under the general category of what psychiatry calls ‘treatment’ (I have trouble dignifying some of it with a term that’s at best an analogy to actual medicine) – that part he wasn’t usually too great figuring out.  And of the people I saw in childhood he was actually among the best.

His general thing was to talk at people, regardless of their response, and the way he described it to me (over and over and over again) it sounded as if he spent a lot of time talking to people who were in some form or another considered hopelessly unresponsive, and through having someone paying attention to them and treating them like a human being they’d eventually have some kind of breakthrough, often just because he restored some level of hope in human interaction.  Like when his patients got better it sounded like it was often less because of what he was saying to them, and more because he treated them like human beings and they responded to that by not shutting everyone out anymore.  I do think my communication issues were one of many reasons that didn’t work on me.

What would have worked on me?  Probably a lot of things, none of which have anything to do with either psychiatric medication or any school of therapy I’ve ever heard of.

I basically needed two big things.

One, get me out of environments and away from people that were toxic, dangerous, and abusive.  (Psychiatric treatment mostly just increased the number of dangerous and/or abusive environments and people I was exposed to.)

Two, give me concrete reasons to believe I have a viable future even if I remain disabled or become more severely disabled with time.  If I had seen people like me living full lives as adults even if they could not work or take care of themselves, that would have given me hope for the future.  And I think even a shred of hope for the future would have convinced me I wouldn’t be in an institution the rest of my life.

Oh and there’s a third element but I don’t have a good way to communicate about it.  It is, however, a very frequent factor in what gets labeled mental illness, and is made worse – much worse – by most forms of psychiatric treatment.  (In fact many of them are practically a formula for how to create the problem if it isn’t there in the first place, and make it worse if it is.) 

But I think even the first two things alone would have helped a good deal.  Some efforts were made in those directions by some people but not nearly enough.  And the absolute worst thing, in many ways, were the people who claimed to be giving me hope, but the hope was all contingent on a particular variety of “getting better” that I already knew was never going to happen.  When the basic assumption is “you’ll grow up disabled and permanently institutionalized” and the “hope” given is “with enough help you’ll stop being disabled and therefore won’t need an institution”, and you have a progressive disability, this is a frigging nightmare.  Because both the pessimistic assumption and the optimistic one carry the unspoken belief “People who are sufficiently disabled can only exist in institutions.”  And I could force myself to function better for a short time, which they’d all use as more reason to “hope”, but then I’d lose it all because it was hanging by a thread to begin with and the problems I was fighting against were getting worse.  I needed to be fighting less against my problems and more against any part of society that thought people like me couldn’t and shouldn’t ever expect to live in our own homes.

As it was, by the time I got out from under the thumb of psychiatry and into my own home and getting services, it took me a good five years to get even halfway to a point that could be considered happy or at least not in imminent danger because of emotional issues.  And I had to fight like hell for every inch of that.

This is why I utterly hate – when this happens to anyone for any reason – seeing everyone around a person telling them that they need to be realistic and accept being forced to live somewhere other than their own home, and everyone acting like the situation is sad but inevitable.  That “sad by inevitable” thing is downright contagious, and people just don’t question it.

So very little of what I needed involved meds or therapy, and very little was altered by my being autistic.  I mean obviously the communication stuff was an issue, and I’ve met tons of professionals who think overload is a form of anxiety and shutdown is dissociation and crap like that, but I think even without autism being a factor I would’ve had most of the same problems.

One thing though that I think is hugely overlooked by almost everyone when it comes to autism. And by everyone that includes people who are genuinely experts on the subject.  Very few people understand how many of what get described as “symptoms of autism” are actually – for many of us – signs of the effects of growing up in a society or family that doesn’t understand autistic people.  Like, when every single social interaction you have since you’re born is physically painful or unpleasant in some other way, that’s going to have a huge effect on your social and emotional development.  And same with growing up in an environment where people don’t know how to read your body language, how to communicate with you on even a basic level, and other things of that nature.  Then add on the degree to which autistic people (more than many other disabled people) are specifically treated as subhuman even sometimes explicitly by professionals, and even a lot of the things considered “core traits of autism” are questionable as to whether they really come from the person’s wiring or not. 

Those of us who had major communication issues – whether those were recognized or not (they’re not always obvious to an outsider who doesn’t know exactly what to look for) – also can develop the same or similar issues as someone who was severely neglected as a child.  There are actual reasons that autistic people behave like people who were severely abused and neglected as children even when our families love us and don’t abuse or neglect us.  Bettelheim and Kanner and others got the reasons for this horribly wrong, in ways that had sometimes-tragic consequences, but the actual observation is a genuine one, not just an artifact of misunderstanding people’s body language or something.  And those things are for reasons.  And those reasons have been thrown out with the bathwater when they threw out the refrigerator mother stuff and other useless and/or dangerous psychoanalytic takes on autism. 

I can remember vividly the first time I experienced being treated like an equal human being by a large group of people at once.  Parts of me started waking up as a result.  Sort of like a part of my soul had fallen asleep, the same way your foot can go to sleep and you don’t notice until it starts waking up.  And I began “filling out” into this spot in me that used to feel empty and nonexistent.  I not only felt more 3-dimensional and whole after this happened.  I also began understanding other people better.  

The misunderstandings had always been treated as “part of autism” and “social skills problems”.  But they actually came from a part of me that had never been fed or watered and that had been kicked and stomped on, until it just disappeared and went numb to the point that… if it ever existed in my life, I don’t clearly remember it now.  So I don’t know if it went away or simply failed to develop.  I imagine it was a combination of both.  And I see that same part asleep in a lot of people with the same life experiences as me, and those experiences are nearly universal among people with autism.  So close to universal that their results are taken as a part of autism by everyone including themselves.  And if a part of you has been numb either forever or for so long you’ve forgotten it ever existed, you’re not going to notice it until it wakes up.  And since it gets taken as part of autism, it can also be taken as okay for people to be walking around like this, or even people can develop a weird kind of pride in it, or believe it’s hardwired and unchangeable and therefore a bad thing to try changing, when it’s a part of them that would totally exist and be a good thing if they got treated as even halfway human and equal for a long enough period of time.

But it’s considered usually a bad thing to say that anything normally thought of as “part of autism” is actually a product of experience, or that being treated well will change it.  Both because people are in denial about exactly how badly we are treated (and about how even things not intended to be bad can be terrible experiences for us), and because the deserved backlash against the refrigerator mother stuff has sometimes turned into a total refusal to see anything anyone has done (or failed to do) as having an effect on autistic people’s “autistic traits”.    Including on things that some people (wrongly) consider the core of what makes autistic people autistic.

Not to mention there’s a reason that in one study, they taught autistic kids “social skills” and had not particularly good results, as in nothing really changed, but then they taught nonautistic kids the social skills required to be genuinely respectful in interactions with autistic people, and the autistic people became “more social” and seemed happier, as a result.  Like if that doesn’t say that the “social problems” are at minimum a two-way street, I don’t know what does.

All of which is also important for anyone in the life of an autistic person to be aware of.  Including the person themselves.  Lots of things attributed to our brain wiring have little or nothing to do with innate brain wiring alone, or only do in some of us but not others. And most of those things can only be solved by changing how other people respond to us.

Mental Health Therapy and the Autistic Client: The Autistic Operating System