Women on the Spectrum – How many fly under the radar?

Something happened to me today that completely and utterly deflated me, undoing all the progress I had made yesterday in setting my life in a new, positive direction.

Firstly I would like to thank anonymouslyautistic for posting about this, which pretty much sums up the many issues women and girls with ASD face – being underdiagnosed or even misdiagnosed as so many of our symptoms overlap with other things. This is the problem I faced today.

I was apprehensive about going to a psychiatrist. I have always left appointments more confused and miserable then when I went in. I had hoped today’s visit would be more positive – I have a clear understanding of what I have, I know how it affects me. I can describe in detail all the little things that I used to think were normal – banging my head when frustrated, the issues I experience from sensory overload – instead of leaving them out and considering them just normal and not interesting enough to discuss. Armed with all this new information I have learned about myself since my diagnosis from my long term psychologist who specialises in ASD, I thought “maybe this time will be different”.

Why bother going? Without going into too much detail about my personal circumstances, I need a diagnosis from a doctor or a psychiatrist in order to put in place some things that will help me integrate into a supportive workplace and be more financially independent. I have found that my diagnosis, although recognised and acceptable to most organisations and people I deal with, is now not good enough for the government. This is most upsetting but unfortunately, the way it is. So even though I have never had a correct diagnosis from a psychiatrist, back I go and spend $400 that I don’t have to get a piece of paper that tells me what I already know.

TL;DR: I have a piece of a paper. It’s not good enough for government. Need a more expensive piece of paper.

The psychiatrist was fine, don’t get me wrong. I am not down on psychiatrists at all, they do fantastic work with a lot of people and I am not undermining that. It just so happens that the ones I have seen in the past saw something in me that made sense to them, and they ran with it. My point being, it is such an easy thing to do with girls on the spectrum. We camouflage ourselves well, it is a skill we have developed to fit in and not appear different, and so many of our symptoms align with many other conditions it is no surprise that it is missed. But today was a let down, I had what I consider to be an open and shut case of Autism. So why was it ignored, again?

Firstly, the psychiatrist kept interrupting me. For anyone on the spectrum you will know that this completely derails you. I kept forgetting my points, forgetting to include parts of my behaviour that really cemented my ASD diagnosis, trailing off and losing my focus. Because of this I felt like I wasn’t able to properly articulate myself, and I found myself being guided down avenues that weren’t particularly relevant, for example, I would be trying to explain my sensory issues and how they affect my daily life. What I wanted to say that places with a lot of people and noises and lights and unexpected movements frighten me, and explain the methods I have of dealing with these fears (eg: putting on sunglasses to avoid bright lights, wearing noise-cancelling headphones in noisy places, etc). But what actually happened is this:

“…so when I go outside I get bad anxiety from all the movement and all the people, like for instance when I avoid going to busy shopping centres because…”

“Have you always avoided going to places you know people will be?”

“…Well, yes, but…”

“And when you were growing up, you mentioned you were bullied by other children at school. Did this make you avoid school?”

“Yes…” And suddenly we are talking about past traumas and things and I am thinking, here we go, another diagnosis of Borderline Personality Disorder or some such thing and before you know it, he is talking about Avoidant Personality Disorder. I had never heard of this before, so I didn’t have the knowledge to know whether it fit me or not. Since arriving home I have done some research and no, it does not fit whatsoever.

“People with avoidant personality disorder experience long-standing feelings of inadequacy and are extremely sensitive to what others think about them. These feelings of inadequacy leads to the person to be socially inhibited and feel socially inept. Because of these feelings of inadequacy and inhibition, the person with avoidant personality disorder will seek to avoid work, school and any activities that involve socializing or interacting with others” (Bressert, 2015)

Ok, I guess this kinda fits? But there’s more:

“…They desire affection and acceptance and may fantasize about idealized relationships with others.”

NOPE. I can’t stand affection. Don’t really need acceptance, either. I’m just fine living life by myself and playing video games. And fantasizing about idealized relationships? I guess? But only when I’ve been really unhappy with my life, and who doesn’t fantasize about having things differently when they are in a pit of despair?

The more I read, the more I realised that this didn’t fit at all. The psychiatrist did not diagnose me with it, but he tossed around the idea and now I am reading more about it, I understand where he was trying to go with his line of questioning. As it has happened before, it seems that something I have said has triggered an idea centering on a particular condition, which directs the line of questioning, which may produce more evidence (or not) to back up this idea, and then suddenly it’s entrenched in the professional’s mind that this is what you have and they don’t really look at anything else.

What happened today reminded me of the Girls with Autism: Flying under the Radar post, and I had to go back and read it in more detail and reading through the mini-guide was a revelation. Sure enough, it echoed the issues I have faced my entire life. And that got me thinking further, how many girls and women are still struggling through their lives, not knowing why they are different and getting many different but incorrect answers from health professionals? Girls on the spectrum don’t usually want to make waves, so how many of them just meekly accept these diagnoses and continue on without the tools or knowledge to help them live a more fulfilling and easy life?

So, rather than change the name of my blog to “Everyday Borderline Personality Disorder and Avoidant Personality Disorder with co-morbid Major Depressive Disorder and Anxiety Disorder Blog”, I might just stick with “Everyday Autism Blog” and continue in my search for that piece of paper. Wish me luck.

 

References:

Bressert, Steve. 2015. “Avoidant Personality Disorder Symptoms.” Psych Central. http://psychcentral.com/disorders/avoidant-personality-disorder-symptoms/.

Egerton, Jo and Barry Carpenter. 2016. “Girls and Autism: Flying Under the Radar.” Accessed June 1st, http://www.nasen.org.uk/resources/resources.girls-and-autism-flying-under-the-radar.html.