To those who take issue with self-diagnosis

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Because it was requested in this thread that people not debate the validity of self-diagnosis there, I'm responding in that vein here in this new separate thread instead.

As I said here:

Perhaps there should be a distinction between diagnosis and self-identification (perhaps a better term than self-diagnosis), with both being valid, but for different purposes? Perhaps (professional) diagnosis is important for psychotherapeutic purposes, but self-identification is valid in terms of seeking other kinds of support? I think we are our own best judges as to what kinds of support groups we find most helpful. And I am very uncomfortable with the idea of a community being dependent on external gatekeepers.

Also, what do you think of the concept of "cousinhood" as used by various founders of the autistic adult community back in the 1990's? See Reviving the concept of cousins by Mel Baggs.

I would like to propose the term "autistic-like" as a non-diagnostic term that people can self-identify as, based on their own knowledge of their own personal traits. I feel that support groups NOT led by psychotherapists should define themselves as being for "autistic and autistic-like" people -- including especially those "autistic-like" people who, like me, have highly visible autistic traits and are unable to pass for NT. Also I feel that the autistic rights movement should welcome "autistic and autistic-like" people.

I like the term “autistic-like”. I think it’s good that communities like this one are open and supportive of people who are questioning whether they fit the criteria for something (in this case, autism). It’s important for people to feel accepted and to be able to find help and advice if they want it, but it’s also important to remember that things like autism are very complicated, with symptoms that overlap a variety of other conditions, including depression, anxiety, PTSD, OCD, ADHD, Schizophrenia and others. I think “autistic-like” is a good way of saying, “I show symptoms that could fit on the autism spectrum, but I have yet to get confirmation”.

If your autistic traits are obvious, surely getting a diagnosis wouldn't be very difficult. If you're that serious about being on the spectrum that you're seeking out support for it, surely you'd be serious enough about it that you'd get yourself diagnosed.

I personally see no reason why you shouldn't try and receive a diagnosis before claiming you're on the spectrum in any manner. I think that's the reasonable way to go about it.

I wouldn't even call myself 'autistic-like'. I would call it according the problems. I think 'afraid of people', 'overempathical' or 'emotionless' aso. instead.

Yes, that seems much as I see it. In terms of peer-to-peer support, such as this site or a drop-in group, I think it's enough that people can identify with each other's experiences "according to the problems", as quite_an_extreme put it. When I'm on a thread talking about a particular trait, then anyone who's experiences of it are recognisable to me is someone that I'll listen to and try to help - I don't care what formal condition causes that problem for them, and don't expect them to care what causes it for me, unless the aetiology is necessary in order to properly understand the problem.

When it comes to formal support, imperfect as the definition and diagnosis of autism or its components might be, a formal assessment of needs of one form or another is to be expected. And if someone is telling people that they "are autistic", then it's reasonable to wonder how they know this and whether they may have jumped to conclusions if it hasn't been independently verified.

As to the language to use, I'm not particularly fussy, and have no objection to the suggestions you made. When someone says they are "self-diagnosed" or "seeking a diagnosis", I have a pretty good idea what they might mean. As pointed out here in recent threads, we already have much jargon of our own already, and many terms are not used very consistently even amongst ourselves (by me as well, I have no doubt) and are very likely to be misinterpreted outside the community.

I was told by a couple clinicians I work with that the ASD diagnosis is really focused on the disorder aspect--how much the autistic traits disorder your life, basically. So, it seems someone could be autistic without being very disordered. Or, to draw a parallel, every morning before work I check the stove/oven to make sure it's off, and I turn the door knob three times to make sure the door is locked. This is obsessive compulsive, but I don't have OCD because I'm not doing it so long I'm late for work and harming my life.

Once you are actually in the room with the specialist psychologist, for sure. But not everyone lives in a place where access to this kind of healthcare is available or affordable to them, and in other places waiting times for assessment can be literally years (such as where I live). I think this is one of the most important reasons not to exclude people without a formal diagnosis. I would say that I'm a little more circumspect about people who won't seek a diagnosis despite claiming to be significantly disabled, but certainly not those who desire a diagnosis but are prevented by circumstances beyond their control.

It should be remembered that the obtaining of the diagnosis, for adults, can be both expensive and time-consuming.

Semantically, I find “self-identified” to be better than “self-diagnosed.”

I don't have an official diagnoses. But, since autism is one of my special interests, I know it more about it than many people with Asperger's!

I doubt I'd need a diagnoses for therapy, as I live next to a wealthy area where there are doctors who operate outside the usual insurance paradigm. I have enough saved to retire early, even if I didn't have access to Social Security at 60.

Some of the issues I have with self-diagnosis...

... those who self-diagnose in order to have an excuse for misogyny, misandry, and/or misanthropy.

... those who self-diagnose in order to have an excuse for being passively shy or actively anti-social.

... those who self-diagnose in order to have an excuse for not getting a date or a job.

... those who self-diagnose in order to have an excuse for living at home with their parents.

... those who self-diagnose in order to have an excuse for avoiding any responsibility at all.

... those who self-diagnose in order to have an excuse for self-medication.

... those who self-diagnose in order to "join the crowd", as if having an ASD increases one's social status.

... those who self-diagnose in order to have something to complain about.

HOWEVER, those who self-diagnose and then seek confirmation from an appropriately-trained and licensed mental-health professional will get no flack from me.

^^ Most of these things have happened in my experience.

In terms of the 'autistic-like' phrase, the issue i have with it is it's you making a judgement that your traits are autistic-like. Maybe they are, but as a non-diagnostic-expert I don't think it's appropriate for you to make any definitive statements like that. I think if you want a term to describe people who believe themselves to be on the spectrum but havent been diagnosed, 'suspected autism' or 'suspected autistic' is superior terminology as it encapsulates the possibility that you're on the spectrum or have autistic traits, but also doesn't definitively say so.

One of my favorite people on WP (who is an autism researcher) used to say that Autism is defined from the outside by behavior, not by introspection from a first-person perspective.

I think Fnord's statement (about "those who self-diagnose and then seek confirmation from an appropriately-trained and licensed mental-health professional") is spot on.

Completely agree. A suspicion one has a neurological difference is not proof that one has a neurological difference. If you want to claim the autistic moniker, you should have at least at some point attained objective evidence via consulting a professional. What you 'identify as' is irrelevant, because people can literally identify themselves as whatever they want in this day and age.

There's a fine line between having an excuse and having an explanation. There's also a massive middle ground between someone who tries their best but fails and someone who simply doesn't try.

For nearly all of the examples you gave, I've got a problem with someone who makes no effort at all, regardless of whether they're self-diagnosed or professionally diagnosed. But if they truly put in effort and fail, we shouldn't be holding it against them, regardless of diagnostic status.

If someone truly tries to get a job and can't do it, I sympothise with them regardless of whether they're self-diagnosed or professionally diagnosed. If someone makes no effort at all, I'm not OK with it, regardless of whether they're self-diagnosed, professionally diagnosed, or completely undiagnosed.


Then there's other things, like being passively shy or anti-social. How much effort is enough? Many of us are capable of fitting in when we put in a very strong effort, but it's also exhausting to try to "pass" all the time. I think the line between how much effort is enough really varies from person to person, but the fact is, if being social exhausting for you, I think some level of sympathy needs to be given to you, even if you've had a psychologist explicitly tell you that you don't have ASD.

I'll reply to various posts in this thread later. For now I'll just clarify that I am on the waiting list for a diagnosis, despite my many doubts about the diagnostic procedure. Briefly my main doubts are:

1) I question whether, and how, the psychological testing component can possibly be appropriate for people my age, especially for those (like me) with highly unusual adult social development trajectories.

2) Again due to my age, not much info is available about my childhood beyond my own memories.

3) Although I will try to keep an open mind about this, I strongly doubt that there are any therapies that would be helpful to me (or, at least, helpful enough to be worth the time and energy I would have to put into them), both due to my age and due to what seems to me to be the generally still-primitive, still very unsettled state of autism science and therapeutic practice (based on what I've read about it over the past year).

I've discussed these issues in more detail here, in the separate thread Diagnose or not?.

I'll respond on other issues later.