The ever present diagnosis debate

One of the things that I have noticed through using online forums and support groups for people with Aspergers is that one debate that pops up incredibly regularly is what I term the “diagnosis debate”-in other words, are you self diagnosed or professionally diagnosed?

Let me start off by clarifying here that, unlike some people I have come across, I have nothing against self diagnosis of Aspergers Syndrome. I know how expensive it is to get a dignosis of Aspergers in the United States so lots of adults living with Aspergers Syndrome in the US simply cannot afford a professional diagnosis, and I also know that ease of getting a diagnosis varies hugely in the United Kingdom depending on how much local professionals know about Aspergers. There is also the fact that a lot of people with Aspergers who weren’t diagnosed as children fail to obtain a diagnosis as an adult because it is naively and wrongly assumed that it clearly can’t have affected them that much or they would have been diagnosed before. There are lots of other reasons why obtaining a professional diagnosis can be hard-some people have grown up in cultures that have no understanding of a condition such as Aspergers, some have existing diagnoses that mean professionals are reluctant to consider Aspergers, feeling that any symptoms of Aspergers can be explained away as a result of their other diagnoses, and some people feel that getting a professional diagnosis would alienate them from people.

For lots of people out there who are self diagnosed, they do undoubtedly fit the diagnostic criteria for the condition. Indeed, I have come across a lot of people online who describe reading a website about Aspergers and feeling overwhelmed by how similar it is to their own experiences and how much it explains their life to date. I must admit that, as someone who was professionally diagnosed at the age of eight, I have never had to experience going through life, not understanding why I do certain things a certain way and not understanding why I see the world so differently from others. I can only imagine the sheer relief at reading up on something and thinking, “That’s me!” Living with Aspergers can be hugely isolating-living with Aspergers without knowing that you have Aspergers must be even more so. Accepting that there is a reason for your eccentricities and quirks means that you find a sense of belonging among the Aspergers/autism community online and this means that, for some people, it is the first time they have been accepted as themselves anywhere.

However, there are people out there who I think self diagnose themselves a little too quickly and probably would not fit the diagnostic criteria if they were to see a professional. I am attempting to be as diplomatic as I can here as everyone has their own reasons for self diagnosing, as mentioned earlier. One thing I have come across a lot online is people who have self diagnosed themselves with Aspergers based purely on the social aspect of the condition. This is not unusual as it is the social aspect that is most well known about and most well written about. Ask the average person who does not know anyone with Aspergers personally to describe the condition and they will probably say something like, “A bit of a loner” or “prefers to keep themselves to themselves” or variants of those two observations. As awareness is rising, the other aspects of the condition, such as the sensory issues, the difficulties with language and the need for routine in a lot of cases are receiving more recognition but, in most people’s minds, it is still the social aspect that is forefront. I know that Aspergers differs hugely from person to person-some people don’t have any need for routine and can be spontaneous, some appear to have no sensory issues and some socialise easier than others but, from my experience only, most people with Aspergers, including myself, have a combination of symptoms from different areas of neurology, not simply the social symptoms. There is a reason why diagnoses of conditions on the autistic spectrum have to meet the criteria of a triad of impairment (which lots of people on the spectrum as well as professionals think should be made a square of impairment to incorporate the sensory issues that have such an impact on the lives of people on the autistic spectrum). I think that it is more of a problem in society that leads people to want to explain their social difficulties with a diagnosis. Why can society not accept that there are all sorts of people and that some people are more introverted than others or struggle to make small talk? Some people are not naturally social and will never be so, whether they have Aspergers or not. Being introverted and retreating away from social situations does not automatically make you Aspergers, yet I have met people online who think exactly that. I genuinely believe that if society was more accepting of people who are simply not wired to be social, people would not feel the need to search for diagnoses to explain why they are not social. I also feel that a lot of the social difficulties experienced by people on the autistic spectrum arise from difficulties in the other areas, such as difficulties with language and sensory processing and the obsessive nature of people on the spectrum.

As mentioned before, I  have nothing against self diagnosis and understand why there is a need for it in a lot of cases but (and I know this will probably come across as patronising so apologies if it does but it was not my intention) I feel that more research should be done before self diagnosing yourself with something as complex as Aspergers. Look beyond what you first read and get to know people with the condition, either on or off line, so that you can see the other ways in which it affects people. I know that the majority of people who are self diagnosed have done this already but I also know that there are people who have seen websites about Aspergers and felt that it instantly explained why they have such a hard time socially without looking further in depth into the other facets of the condition.

I hope that the above content has not offended anybody-I know that it is a sensitive topic and, if this has upset anyone, I apologise. I was merely attempting to point out that self diagnosis has its pitfalls. Of course, there is no guarantee that professionals get it right all the time either but please remember that Aspergers is a hugely complex condition and goes so much deeper than simply the social side of it.


3 Responses to The ever present diagnosis debate

  1. roboex1013 says:

    I am self diagnosed. I intend to to see professionals to attempt an official diagnosis when I can afford it but as you mentioned it is expensive. I actually really appreciate your post. I have received some doubt from others about my self-diagnosis because of both the current popularity of the condition and the main focus on the social aspects of it. Many (possibly even most) people seem to believe it IS only a social impairment or that it must include extreme social impairment. So, I get doubtful looks and on occasion even eye rolls if I state my self-diagnosis. Don’t get me wrong. I definitely have my share of issues with social interaction but for the most part I could “pass” for someone who is just an introvert that doesn’t like to socialize very much. Especially at my age now when going out is less common and most of my friends are having children and doing more family activities, anyway. At “worst” I seem maybe a bit….odd. People usually don’t consider to me to seem impaired in any way, though. Especially not if I am putting in effort to appear “normal” (although that is something I only do now on occasions where it is business related). Of course, they don’t see the build up of anxiety and stress and exhaustion that this act causes and the meltdowns that often happen later if I don’t give myself enough time to decompress before having to deal with…well anything at all…..after the socializing. They also aren’t aware of the sensory issues I have. Those sometimes extreme. Lights, sounds and smells can be overwhelming and distracting (I wear ear plugs in the movie theater now because the sound is so loud that I can’t really actually understand it if I don’t muffle it a little). They don’t all know I avoid phone calls because it is almost impossible for me to follow things being said to me over the phone. My auditory processing issues kick in and without being able to read their lips to compensate for it everyone sounds like the adults on Charlie Brown cartoons. They don’t know a lot of things. And instead of listening to me explain them (because I will and can if asked by someone really willing to listen) they assume I’m jumping on some diagnosis bandwagon. :/

    I’m happy that Asperger’s got popular on modern culture since it did help me find my explanation I have needed my whole life. And that explanation has helped me learn to function better than I did before (I may seem stranger to other people at times because of not hiding it as much but overall I function much better) but at the same time it has led to so many people deciding that they must have Asperger’s too because they “hate people” that it is kind of a double edged sword. :/

  2. I have been officially diagnosed with Dyspraxia with Autistic tendencies (which is stupid because Dyspraxia is an ASD anyway). I am self-diagnosed with Dyspraxia and Aspergers Syndrome. My official diagnosis was some years ago so I am considering getting another opinion.

  3. Duttster says:

    I have recently received an official diagnosis of Asperger’s Syndrome and I refused to believe it and still do. I joined a popular Asperger’s themed forum to see if I could get some insight from people who deal with the condition day in day out. I did this to see if I could relate to any of their issues and thus maybe come out of Asperger’s denial. It did not fill me with confidence when a good two thirds of the people I spoke to claimed to be ‘self-diagnosed’. Some genuine and really struggling with life, but there were those that just seemed to want the title for a badge of honour. They proudly displayed their ‘Aspie’ quiz score results on their profile, referred to other ‘normal’ people as neuro-typicals and littered every sentence with ‘Aspie’ this and ‘Aspie’ that. For those that cannot get an official diagnose and struggle with life. I feel very sorry for you. I hope somehow that you can get the help that you need. However, for those who jump on the band-wagon to make themselves feel special or to explain away a few of their personality quirks, get real. You are doing people who really suffer with Asperger’s a great disservice. The more of you that hop on the band-wagon the more people will roll their eyes when the condition is mentioned. I suspect it is the somewhat commonly held belief that people with Asperger’s are somehow superior in intellect that drives this phenomenon. It’s become trendy to be an ‘Aspie’. It’s absolutely ridiculous. When I was diagnosed I went away and refused to accept it. Ok it’s not something to be ashamed off, but then again it’s not something to be proud of. I’ve studied it in-depth and it’s far more than being uncomfortable in social situations and being a loner. If it transpires I really do have this condition, then I despair for my chances when I have to out it and it’s simply been ridiculed because of the this crazy self-diagnosis phenomena.

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