Personally, there’s a lot that I don’t like about the culture around diagnosis of HFA among adults. I don’t know how common false diagnoses are - it is invisible, so it’s a little like complaining about all the fake disabled people who take disabled spots and bring animals around with them. I’m not a professional, and I can’t necessarily spot another aspie by sight or tell how much it is affecting their lives.
There’s also the idea of using a diagnosis and the language of acceptance to excuse bad behaviour. It doesn’t excuse bad behaviour, but it can give some explanation for why some people act inappropriately. It’s not ok though, and being told directly is an important way of learning how to act more appropriately.
Thirdly, a lot of people on the internet seem to be very free about diagnosing their partners with narcissism, psychopathy, autism etc. These issues are out there, but they don’t happen in a vacuum. I don’t like being associated with jerks just because a particular label is used as an excuse or explanation for why they have no concern for others. There are reasons why I might not act in an appropriate way, and I want to know what they are. I also want to know about anything that makes it more difficult to see or do the right thing, whether it’s something internal like autism or external like patriarchy, racism, upbringing etc. (or a combination of these).
Another thing I’ve noticed is that the language of victimhood can be very oppositional and unhelpful, even if we are making each other’s lives more difficult. Some language seems to want to place you as the victim or oppressor, and particularly in cases like this I think education and mutual acceptance is really important. Some autistic partners can be really blind to their partners’ needs in a relationship. Some family members and others around autistic people can bully and torment them for being different. I don’t see myself as a victim or as entitled to ignore others, and I think focusing on differences of communication and experience can bridge a lot of gaps (whatever their neurological issues are).
Carphologia (uncontrollable, obsessive picking and yanking and pulling at things) and related syndromes do sound funny, but it’s actually pretty horrible to witness. It’s not uncommon to encounter when you’re doing death vigil for a loved one. Wear a long sleeved shirt and just keep putting their hands in yours, so they can pull and tear at your fingers and cuffs; it’s uncontrollable, necessary for their comfort and unlikely to do any permanent harm to you, and it keeps them from repeatedly destroying their own clothing, hair, skin and medical device connections.
Your handling of the MIL situation was pure Zen. Also, good on you for being mindful of aggravating factors such as her recovery from hip surgery. It’s so easy to forget that each of us have our own burdens to carry—some observable, some not. Your consideration and grace remind me of this quote:
“The really important kind of freedom involves attention, and awareness, and discipline, and effort, and being able truly to care about other people and to sacrifice for them, over and over, in myriad petty little unsexy ways, every day.” —David Foster Wallace, from ‘This Is Water’
Why I said that it sounds silly is that I have never, ever seen people with flakes on them. Sorry if that sounds insensitive. I just picture myself talking with someone as somebody behind discretely shakes a box of corn flakes over them.
I definitely empathize with the difficulty of dealing with compulsive behaviors, but never knew that this was “a thing” and still struggle to understand it. My intuition is that they could have probably phrased it better.
I don’t quite agree. I think that it is an institutional problem, so it is both political and clinical.
The US medical establishment evaluates physiological health with optimal models, so diagnosticians and therapists encourage all to be as healthy as they can be. So there is no such thing as being “too fit”. Nobody is going to suggest that there is some clinical basis why you should display more diabetes or heart disease simply because other people may have these conditions.
Whereas mental/emotional/behavior health is evaluated this way, using normative models. It functions as a sort of statistically objectified populism, where baseline and pathology are determined not by what works best, but rather, how common a condition is.
So, in my 40s, am I employing a maladaptive strategy in life by almost exclusively using verbal communication instead of non-verbal? Or are most of the people around me employing a maladaptive strategy by stubbornly refusing to verbalize their feelings? Depending upon how one frames it, it could go either way, but the normative model makes the former a pathology simply because fewer people think of it that way.
I think of this sort of diagnosis and therapy as being misanthropic and useless. It’s best use is not to help people “fit in” to some arbitrary schema, but to help people to customize their cognition.
Another annoying double standard is that physiological diagnoses are rightly understood to be transitory, whereas there seems to be a popular perception that mental/emotional/behavioral diagnoses are somehow permanent. Nobody ever claims that YOU ARE the flu or broken leg you had ten years ago, yet they might suggest precisely this with a DSM V diagnosis.
It can be milder and/or kind of under control. Milder in the sense of some picking and scratching, removing the crust, regrowing, and a bit pity if it’s health, etc. At the head or other places. Annoying, but duable.
The notice I still doing it, is ones in a while somebody asking if I’m nervous because I keep scratching my head.
Bigger call, a while ago, seeing a crust at the kid and before I knew scratching it. Like he said not the first time, oops… Not really to laugh about, but that is the thing I do, laughing is coping, and now I know and stop the ‘urge’ to scratch him.
I lied a bit on one question - it asked if I bit my tongue or cheeks when feeling nervous. I bite my hand, and I thought that counted. I leave visible marks. For all of my scheming to appear normal around other people I don’t think it ever occurred to me how crazy this might make me appear. On the other hand, it seems a little like other people just plain don’t notice.
I’ll go to church with my family, but one of the reasons I find any excuse not to sit through the main service is that I end up with bad fingernails and cuticles. Right now they’re ok, but once a person behind me asked my wife if I was particularly convicted by the message. No, it was just hurting my head.
One of the problems can be that many common comorbidities have overlapping symptoms, and a particular problem may come from a number of comorbidities. There are also issues that may come from common experiences growing up with the autistic spectrum, such as anxiety (this could come because people keep doing things that you can’t predict and may manipulate you without you seeing it. You may also keep making mistakes or failing and not understand why). In one Swedish study, 50% of individuals with ASD had four or more comorbidities, while only 4% had none.
Some other reasons why I think adults with possible HFA should look into getting a diagnosis (or at least finding out about the symptoms), even if they seem to be coping reasonably well:
There are problems that can come later in life as responsibility increases. Someone may seem high functioning when they get married, then have a couple of kids and gain more responsibility at work. The increased stress becomes too much for them, which can also be very stressful for their partner.
Other problems with relationships, for example someone having an active sexual relationship until marriage, then suddenly losing all interest. Rigid thinking meaning that the other person feels controlled and unable to pursue their interests or be sociable. Difficulties communicating love - for example, the NT partner feels starved of affection because soft touch feels very uncomfortable, or the AS partner doesn’t say that they love their partner, offer hugs, show emotion in the same way, recognise their emotional needs etc. On the other hand, the AS partner may feel that doing things for the other person should be enough to show them that they care about them, while they may feel that their own needs are not being met.
Often Aspie men may end up in a relationship with a more nurturing NT woman who is their bridge to society, but the woman may feel that she spends all of her time giving and getting nothing in return. Autistic people often build friendships around interests, so it could feel almost like a business partnership for the NT partner.
Communication between autistic and neurotypical people is possible, but it can be difficult. Without useful tools, an autistic person could spend their life muddling through when they could thrive under the right conditions.
In typical fashion, I’ll make a jump off topic to talking about relationships between NT men and women. There are common ways that marriages and other relationships can turn out, and it’s often not good for the woman. She often takes on a lot of the housework and childcare, is expected to manage a lot of the social organisation etc. Her efforts to get more support are seen as nagging and the situation doesn’t improve. Some of this can actually be explained by neurological differences between men and women. However, this isn’t inevitable. There are big cultural differences around the world, even if you can still see common traits. Some relationships work very well, even with real differences. Often this happens by respecting everyone’s needs in the relationship and finding compromises and ways to communicate. While there may be a particular dynamic with ASD, there can be specific reasons why they don’t work and ways that they could work a lot better.
Your neurodiverse (Aspie) score: 102 of 200 Your neurotypical (non-autistic) score: 110 of 200 You seem to have both neurodiverse and neurotypical traits
So I guess I’m pretty much in the middle.
I wish there were a level beyond “yes” for some of the questions about being uncomfortable about intimate social situations, being hugged by people you aren’t romantic with, disliking traditional dating, etc.
This is some of the tightest writing I’ve seen from you. Your articulation of the incongruence between psychiatry and other branches of medicine deserves its own thread.
Consistent use of the word ‘autist’ isn’t easily defendable, I’ll give you that. But for the sake of a tight headline, it works.
To your point: wording that invokes diagnostic terminology as a noun referring to the affected person—schizophrenic, autistic/autist, depressive, etc.—is, as I see it, unproductive in at least ways:
1) such wording confines discussion within whatever taxonomies and models are currently accepted in psychiatry, however medically inaccurate they may ultimately prove to be
2) it discourages further consideration of the otherness and uniqueness of the affected person’s subjective experience
3) (potentially the most damaging one) usage of this wording encourages internalization of one’s mental struggles, suggesting that they are part of their identity and/or immutable
All that said: the few self-described ‘Aspies’ that I know feel proud of who they are and how they think and have no reservations about internalizing their atypical cognition as part of their identity. Ultimately, it’s what’s most productive for that person to adapt in life. If identifying with your brain cooties makes you stronger and more adaptable then anyone telling you otherwise can buzz off.
I was just asked to “make a thread about autists”, and took it literally when choosing the headline. I don’t tend to use the term though.
I think it’s not quite the same as a disease or some other psychological conditions, in that it offers a number of advantages at a higher functioning level. It’s a different way of thinking that I wouldn’t want to be cured of. It’s also pervasive, so it feels more like a part of me than a disease might. There are challenges and particular needs when it comes to living with others, but I also think that being more neurotypical can involve challenges and needs that I don’t face.
As for being proud: I’m probably not. I just feel like after spending a lot of my life wondering what was wrong with me, I’ve just found a large group of people who can give me better answers than my own family could. That part is nice.
I guess I’d say that I’m not proud of my gender and sexuality either, especially not to the point of saying that they’re better than others, but I’m glad that there are accommodations for them and I’m glad I’m not judged based on the relative strengths of other identities.
All words are artifice, and this one seems at least grammatically/lexically consistent. Does extension of your examples mean that instead of “optimist” it would be less contrived if I used “person with optimism”? I am not sure that is any better. Instead of “scientist”, maybe “scientific person”?
Not really to laugh about, but that is the thing I do, laughing is coping, and now I know and stop the ‘urge’ to scratch him.
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