I believe identity matters. As such I support the right of humans to identify with any culture, belief or condition. If one believes one has a condition one can accept that belief without harming those who are formally diagnosed with the same condition they identify with. There’s room in this world for both AUTismS the condition and ‘Sexy Autism’ for those who identify with it as a way of thinking/being. And there will be those who live in one or the other and those who have lived elements of both.

An armchair diagnosis is a self diagnosis, it may be imagined or actual but to the person it is actual and until verified or not it cannot be proven nor disproven. I was diagnosed at 2 as psychotic in 1965 (autism was called Childhood Psychosis then). I was later diagnosed with language processing disorder in 1972 and as autistic in 1990. I am not threatened by those who identify with autistic experiences. We are all autistic sometimes, in some situations and to different degrees.

Understand that the term armchair diagnosis or self diagnosis doesn’t deserve venom. People have a right to explore identity, to identify. It’s human. Most who are self diagnosed are honest enough to know and state they were the diagnostician and one without professional qualification, so why feel threatened… they are humans exploring identity.

It’s not armchair diagnosis that causes harm and hatred, its harm and hatred that are generated by human beings of all kinds, using all kinds of reasons and excuses for it. An armchair diagnosis does not cause psychopathy or narcissism. Psychopathy and narcissism cause themselves. At the end of the day there is no reason why someone who self identifies with autism should equate to ‘hater’, nor why they should be hated – by anyone.

Sure, there may be those with autism and psychopathy, Narcissistic or other personality disorders or mental illness or those who don’t actually have autism but strongly identify with it or as it. If they do and do so without harm to anyone then so be it. Human to human, they are still my fellow human beings.

One of the most bizarre things happened to me around 10 years ago. An Aspie who saw herself as ‘The Autism Whisperer’ (and openly advertised herself as that’) met me at a conference. I had some stammering, a bit of language tumbling, some Exposure Anxiety and I had some tics… I had been doing a talk then signed books so my nervous system was rather fried… anyway, I looked more autie than usual… she was fascinated by me but then I got a letter. she wrote that she had wanted to tear my skin off and bite me to the bone. She wrote that she resented me with the greatest enormity because i was on the outside as autistic as she felt she was on the inside. The woman scared the shit out of me, why want to harm and disfigure someone you met because they seem more outwardly autistic than you? But it taught me how passionately, sadly, sure, pathologically invested, someone can be in investing their entire identity in having autism.

Carmel Anne Jones
Up to a point, yes. But I have had some self-diagnosed people accuse me of assuming superiority because I was formally diagnosed. It is particularly bad when they are forum admins and make such comments. This happened on one forum I was on (a well known one but I won’t mention the name) and I ended up being banned for some stupid trumped up reason.

Daisy Walton
Excellent post on “armchair diagnosis” Donna. You’ve cleared up a lot for me. Sometimes a self diagnosis is a stepping stone towards a formal diagnosis, as the previous post has proven. I don’t mind self diagnoses, as they can lead to a formal diagnosis but I dislike it when those with self diagnosed Asperger’s Syndrome or HFA/LFA assume those who are formally diagnosed are not good enough.

Fleur Wiorkowski
See I got formally diagnosed because I felt like I needed that – probably my background in psychology – but I know plenty of people who have diagnosed themselves and I don’t feel that is any less valid . . .I’m sad I didn’t meet Ning when I was there! As you know, I speak fluent cat and learned that before I learned human . . . I was doing a kitten yowl yesterday at my house and Lewis was looking at me like ‘Oh my Gosh!!!!’

Dàibhidh MacNiocail MacAindreais
I am an initially self-diagnosed (using medical records) person who went on to get formal diagnosis from two UK psychiatrists, one of whom was Digby Tantam at the University of Sheffield. I have also had that diagnosis confirmed by two psychologists, a psychiatrist and a rehabilitation-specialist medical practitioner in Finland: I cannot see any logic in the notion that one can be ‘superior’ because of having a self-diagnosis and ‘inferior’ for having been diagnosed formally. If anything, and I’m sure that Donna would agree with me, any superiority or inferiority would lie not in the person who has a diagnosis but in the quality of the diagnosis given; and this necessarily means that a formal diagnosis (because of the rather extensive collection of information that it entails) is almost bound to be of a superior quality to a self-made diagnosis. RE: “It is particularly bad when they are forum admins and make such comments.” Absolutely. That kind of separatism in the autism field appalls me intensely. This is a rather special form of the Dunning-Kruger effect and, in the case of people like that, I’d reject their self-made Asperger diagnoses and substitute dxs of Dunning-Kruger syndrome instead (yes, I’m a trained psychologist and know how to do psycho-diagnostics). There’s some pillocks about. As Donna says: ” We don’t have to carry the baggage.”
This is not to say that I abhor or disdain self/armchair diagnosis of people by themselves: indeed, there’s probably a useful process that could be made available there (my friend suggested many years ago the notion of peer-validated diagnosis – a more sociologically-sound process, don’t you think, Donna?).

Xenia Grant
In the US, it costs money to get a diagnosis, so many don’t because they can’t afford it. I don’t know how it is in Australia, but many would like to get a formal diagnosis if they had the $$.

Paula C. Durbin-Westby
I support people using self-diagnosis to understand themselves. I support those people saying they are autistic. People tend to know themselves better, for the most part, than some professional who may spend a couple of hours with a person…. Misdiagnosis by professionals is common. The criteria for autism are very clearly spelled out in the DSM and ICD manuals. In addition, if a person has other characteristics that are often found in autistic people but not as much in the general population, then it makes it easier. Some of those are face blindness, difficulties with motor coordination, taking things literally (comprehension), hyperlexia (reading at a very early age), synesthesia, and others. I don’t diagnose other people, though even if it is tempting at times. Also, in the US there have been many examples of people being misdiagnosed and put on inappropriate medications, discrimination against people who have a diagnosis from a professional that appears on their medical records, etc. so there is some reason for certain people not getting a “professional” diagnosis.

Dàibhidh MacNiocail MacAindreais
I do. But only if I’m asked to. A good assessment for anything that can be diagnosed should take more than a couple of hours spent with the prospective diagnosee. It should include talking with their friends and relatives, other people they… come into contact with – teachers, medical personnel, and so on – and it should involve some objective testing of abilities and skills (both academic and non-academic). Definitely there should be a review of all available health/medical and school records, as well as observations of the person in their real life settings. Definitely more than a couple of hours, that lot. And that will get a lot of information, really, after which it’s then a matter of developing a grounded theory of what a person is like under various sets of conditions, and why they are like that, and – if there’s a name in ICD or DSM – what the name for it is. Paula, your point about misdiagnoses and discrimination and so on is definitely not lost on me: similar thing happened to me as a child, and it definitely stands as a good reason for not seeing many professionals. Same with the discrimination issue – I’m surprised that many official bodies do not research very much that issue. It’s a bloody important one… sociologically and psychologically.

Elyse Bruce
What a number of people have a problem with when it comes to those who are armchair self-diagnosed is that many of those people actually have a diagnosis of bipolar or schizoid personality disorder and have chosen to adopt the diagnosis of… Aspergers because it is a more “trendy” and “positive” diagnosis than the one they have received, in their opinion. Oftentimes, those people misrepresent the “adopted” diagnosis and behave in ways that lead others to cultivate a negative opinion of those who actually have the disorder, disabilities, diseases, or difference. This is where self-diagnosis becomes a danger to all. While it’s true that people tend to know themselves better than some professionals, the fact of the matter is, most people — not even professionals — have the objectivity required to make an accurate self-diagnosis. A small handful are able to make an accurate guess at what is most likely the cause of their situation but an objective, knowledgeable third-party is still the best indicator as to whether the guess is accurate. One must also keep in mind that sometimes symptoms that appear to fit the desired psychopathy is actually indicative of another issue altogether. Fine and gross motor skills are impaired for many on the spectrum however it is an impairment that is seen in all neuromuscular diseases. So snobbery is not the reason for being wary of those who are self-diagnosed; common sense is the reason for asking more probing questions of thsoe who are self-diagnosed to ensure that it is not an “adopted” diagnosis for the purpose of jumping on the “trendy” bandwagon in order to get attention, secure a book deal, become a conference speaker, etc.

Kaliane Moloch
I’m self diagnosed. Not out of fashion…my mother noticed before I did that I had mild ASD symptoms on learning about it due to my brother. I understand, though. Not everyone has the objective mind needed to do an accurate self-diagnosis. I mean I’ve come across people who heard a little bit about ASD once and then think they have it because they ‘sometimes don’t understand people’… It’s fine if people ask me for more details, and I’d be the first to admit I was wrong if some neurological test found so.

Chelsea Reinschmidt
The issue of diagnosis is tricky. I just finished watching “Rx Generation” not sure if any of you have seen it but it talks about how my generation and younger are being diagnosed with all sorts of mental disorders and medicated at younger …and younger ages and the controversy over diagnosing children. Autism definitely seems to be a bit more clear case but those diagnosed with pediatric bipolar or ADHD are often diagnosed simply to qualify for whatever services the kid needs in school. It is erronously thought meds will help an ADHD child perform better in school (in fact the research shows by and large this is not the case). A child labeled bipolar is put on cocktail of meds to make him or her more manageable for family/school workers though that seems to be the popular diagnosis for ANY behavioral issue in children. No one really knows how frequently it actually exists. The data does show that medicating children by and large does not help in the long term and actually often causes damage to the developing person. ADHD meds can induce psychotic episode and then that is taken to “prove” the kid was bipolar all along so they put him or her on the cocktail when really every issue was med induced in the first place! This is a bit off point from the topic but it seems these diagnostic categories simply “appeared” suddenly when professionals speculated there was a pediatric version of bipolar and suddenly (with very little evidence and research) little kids were medicated. It seems in part the diagnoses in the DSM anyway are made to profit drug companies. It’s completely unethical. And it has actually been far more likely that a mildy autistic kid be labeled with a mental disorder that medication can supposedly “help” hence bipolar and ADHD are super common dx over aspergers in children. Aspergers often, there is not as much treatment out there for it to “fix” it. Certainly no medication that is thought to “solve” the issue. So I think these unethical practices go into dx as much as anything. And autism is underdiagnosed in those who are high functioning. Even if families can afford to get a dx. These dx are all very subjective in nature.

Donna Williams
Those with armchair diagnoses need not feel they must pursue a medical diagnosis to validate themselves unless they have significantly disabling autism related problems for which they require professional help. Services are expensive and should be for those most in need of them. A diagnosis of AS should not be a fast track to disability benefits unless that person actually experiences their AS as a disability. You can’t have it both ways. Nor should the identity needs of non disabled Aspies mean they need to fight to change the diagnosis of autism from a medical condition to a cultural one. The reality of those with neurological impairments, severe communication disorders, information processing related health disorders are real realities. If those realities impact on a person to the degree they develop AUTistically that needs medical recognition and help. So whilst shared experiences can amount to something cultural, minimalising the health realities or some to ‘all cultural’ is silly and selfish.

But equally there’s place enough to recognise and valid the desperate need of some individuals to identify with condition, perhaps even over personhood if that is their desperation to do so. Who am I to diminish their psychological desperation to invest in identity. If it does others no harm, then so be it. But perhaps it does need a new term, the term Autistic identification so we can acknowledge it is not a formal diagnosis, nor does the person necessarily require services, nor do they necessarily wish to alter or reduce their perceived condition. I’m not going to go around finding every person with gender dysphoria and shake them and shout, but you’re not ACTUALLY a man/woman… to them they ARE their opposite gender, inside. If that’s their valid identity reality, lets accept it. If we have people with body dysmorphias who believe their perfectly normal arm is disgusting and deformed to the point they will lay on a rail track to have a train rip it off, then instead of fixating on whether their arm is actually normal or not we can still acknowledge THEY EXPERIENCE their arm as not ‘them’. There are all kinds of things humans can believe and identify with and sometimes its a phase and sometimes its a life long investment and sometimes it will seem frivolous or look mentally ill, but if a group is experiencing this then we should ask why, what it means to them, is it an identity thing, why is it so important to them. We should at least listen to their individual stories.

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.

http://www.myspace.com/nobodynowherethefilm
http://www.donnawilliams.net
http://www.aspinauts.com