This is a topic I am still learning about, but I am very slow at it because it is often seen the most in communities, and I am not very good about participating in communities. I don’t actually expose myself to many communities, and those that I do, I tend to lurk in.

However, despite all that, I do see things now and then, and there’s one trend in particular I want to comment on. That being – the apparent friction between those who are officially diagnosed, and those who are self-diagnosed.

Basically, there seems to be a lot of hostility from the officially diagnosed towards those who are self-diagnosed. Many people seem to think that if you are not officially diagnosed, that your contributions towards discussions or your experiences are less worthy to be shared.

The inspiration for this post actually came from this thread (warning – it’s a link to reddit). The OP honestly seemed to believe that officially diagnosed people were the ones who would know what they are talking about or have actually been through experiences, while self-diagnosed people have not.

Honestly, I find all that kind of sad and alarming. There are any number of reasons that I person may be “self-diagnosed” and not officially so, and a lack of official diagnosis does not inherently mean that the individual in question must not know what they are talking about or does not have anything of value to share.

So I have seen roughly three types of self-diagnosed people. These are rough generalities and I’m sure there are people I’m missing, but I can only speak to what I’ve seen and how I’ve categorized it all in the way that makes sense to me.

1. Those who have spent months or years researching Asperger’s/autism, looking at their own life, and seeing if it makes sense. There could be any number of reasons they do not have an official diagnosis – maybe they lack the money or support, maybe they cannot find a place that will diagnose adults, maybe they are scared, maybe they are old enough that they don’t see a point to an official diagnosis, and who knows what else. While the diagnosis may not be official, it still has a great deal of thought, effort, and research behind it.

2. Those who know that something is going on making them different, but aren’t sure what. They’ve stopped over in autism land and perhaps believe for a while that it is the best explanation for whatever is going on. From what I’ve seen in this group, they tend to continue to do research and trying to figure themselves out, and either migrate into group 1 or decide that autism is not the most likely explanation and look elsewhere.

3. Those who are socially awkward or rude or sometimes just jerks, who claim asperger’s as a convenient excuse for their behavior. It’s the “I can’t help it, I have aspergers!” line I’ve seen all too often when someone is called out for being an asshole.

The main problem is, obviously, group 3. Before my official diagnosis, I could have probably have been said to be in group 2 for a while, and eventually group 1. Or well, I could have if I had ever self-diagnosed. However, group 3 kept me away from that. Seeing the fad of Asperger’s come and go left me with a lot of anxiety around that label for quite a few years. I didn’t want to be in group 3, I was often repulsed by what I saw, so I just stayed away from everything for a long time.

Thing is, if I had spoken up for help and people had simply assumed I was in group 3 and treated me accordingly, it would have done a lot of damage. When we discount ALL who are self-diagnosed because of the actions of a few, we are throwing the metaphorical baby out with the bathwater. When we decide that being self-diagnosed means you don’t know what you’re talking about or you haven’t had similar experiences, we do a disservice both to them and to ourselves. We reject people who may need help or have need of community, and we deny ourselves the opportunity to hear more perspectives.

We reject the person in their 60’s who’s lived a life of difference and difficulty, who finally figured out why they are so different and why things are so difficult, but cannot get an official diagnosis due to age or income or whatever else.

We reject the teen who is struggling with unsupportive parents and an uncaring school system, desperately trying to learn how to manage autism without any supports in place.

And just to be clear, anyone who is diagnosed as an adult (and there are many of us) has a good chance of spending time in group 2 (or a similar place, regardless of whether or not we explicitly call ourselves “self-diagnosed”) for a while. We’re figuring this out largely on our own, and it can be tough when access to services almost exclusively focuses on children.

Yeah, I’ll agree that something needs to be done about that group 3, giving us all a bad name by offering up autism and “I can’t help it!” when they’re just plain being rude, but I seriously do not believe the solution is to reject all who self-diagnose.


Filed under opinion

4 responses to “Self-Diagnosed

  1. May I link to your post on the diagnosis page of my website? I really like this post! Thanks (and sorry if this is a duplicate comment – my computer was being strange).

  2. Trudy

    I chose to get an official diagnosis when I was 28, because I no longer trusted my own judgment about anything. I wanted an official diagnosis so I could be sure that I really did have Asperger’s, before talking to family members. That being said, it was not easy to find someone who would diagnose adults, and I ended up down several dead-ends before I found a wonderful psychologist who not only was willing and able to diagnose me, but also made me feel more comfortable about the whole procedure. It was also not cheap, as adult diagnosis is not funded by health services in NZ. I completely understand if someone does not want to go down that track, and feels sure enough of their own symptoms to leave it at that. For me, getting an official diagnosis has been a life changer, letting me move past my doubts about myself and start to really discover who I am.