misdiagnosed girl

I’ve struggled to cope with life for as long as I can remember. I’m a worrier, a stress head, and the little things just really get to me. So in my early twenties I asked for professional help and regularly saw a psychiatrist for around five years. I wanted to understand aspects of my personality that were making it hard for me to function. I wanted to know why, as an adult, I still struggled with regular ‘temper tantrums’ and that the littlest of things could set me off. Why I didn’t fit in, anywhere. Not even in a bohemian circus community, or my own family.  I always felt like an outsider, a failure. I wanted a diagnosis, medication to fix me.

After several years, and with some reluctance my psychiatrist diagnosed bipolar. It didn’t really fit, as I do not become manic, and never overspend, engage in lots of sexual encounters nor achieve masses on account of limitless energy. However I am definitely moody, so perhaps I could be suffering from a very rare ultra rapid cycling variety which accounted for my, often daily, flip outs. So I tried a few different mood stabilisers, with limited success, and was never really entirely convinced by this diagnosis, though it was good to have an answer to cling onto during darker moments.

I’ve written on the blog about my bipolar diagnosis, and tried to accept it as the reason for my difficulties. Life have moved on since the diagnosis and I’m now a Mum of three, with a son who was recently diagnosed with high functioning autistic spectrum disorder.

Shortly after he was diagnosed I had taken him out, with a plan to park in a particular place and go to eat in a nearby cafe. When we got to the parking space I had in mind I found that the whole area had been changed to residents parking only. This threw me, because I struggle to cope with the unexpected, especially when a new firm plan hasn’t been brought in to replace the old plan. It had already been a difficult morning, with challenging social stuff, and I started to feel myself freaking out.

I turned and I looked at my son sitting in the back of the car and in that moment I recognised that our challenges are similar. That his issues, though different in appearance, share underlying causes. Having never considered the possibility before it crossed my mind that my problems might be connected to the autistic spectrum.

So followed weeks of thinking and chatting to Mr Purple and my closest friends (some of whom said they had considered this possibility about me). After this time I was able to clearly clarify what my problems look like.

1. I am completely unable to cope without a routine. Punctuality is very important to me.

2. I have a more than usual need to stay organised, with a complicated list system, and very specific ways of doing things. This is, in part, because without it I struggle to stay on top of things, and not constantly lose things and forget things.

3. Socialising is always a struggle for me, I talk to much about myself, interrupt people, and do not understand the different levels of relationship and what kind of conversation is appropriate with whom. Particularly outside of very close friendships, and when dealing with authority. I have been bullied all my life because of my social faux pas.

4. I have regular, destructive meltdowns. I’m not me, I would never behave that way. I lose control and it’s very hard for those around me to cope with. Afterwards I am so so ashamed and embarrassed. I try so hard to stay in control but the next meltdown is always just around the corner.

5.I have sensory sensitivities. Bra’s are intolerable to me, as is sniffing, eating noises, loud sudden noises and strong smells.

6. I find it very hard to focus on multiple tasks. Making the end of the school day, when all the kids try to talk to me at once, very difficult. I struggle to stay calm in these types of situations.

7.I’m extremely clumsy, in fact I was diagnosed with dyspraxia as a child. Which according to this may have overlap with autistic spectrum disorders.

8.I struggle to understand my own emotions. I react without really knowing what I’m feeling and why. It’s a feeling, its not nice, and I’m scared by feeling anything other than happy. I desperately try to fix the feeling, frantically trying to make it go away.

9.I struggle to interpret other peoples emotions. This has caused no end of misunderstanding, and has cost me friendships and other relationships as I’ve got it so wrong so regularly.

10. I do not like physical contact with anyone but my husband and children. Hugs, hand holding etc feel unpleasant to me. I’m also not fond of making eye contact with people, but my wonderful Granny taught me, as a child, to look between peoples eyebrows to give the impression of eye contact which helps normalise my gaze.

There’s more but I think you get the picture. I decided to get a professional opinion and was referred to the local adult autism services. After a long and anxious wait for my appointment the day came and Mr Purple and I met Dr Peter Carpenter who was part of this group who developed the guidelines for diagnosing and managing adults on the autistic spectrum. So in short, he knows his stuff.

After two hours of questions, tests, and observation (as well as some fairly comprehensive pre interview forms filled in by me and Mr Purple) he had no difficulty at all in diagnosing me with aspergers, a high functioning autistic spectrum disorder. So I finally have an answer. Not at all one I would have ever expected but one that really does fit. All of these issues which have caused problems for me all my  life fit so perfectly into the triad of impairments and I’ve no doubt that this diagnosis is accurate.

This feels like the start of a more promising future. Now that I understand why I am the way I am, and that it’s neurological and I couldn’t have done anything to change it, I feel less hatred and more compassion for my flaws. I will be sent on a course to better understand this diagnosis, as well as having access to a weekly drop in for additional support. People may understand me better, and my husband and I can adapt to fit my needs. It’s been a long road, and I wish it hadn’t taken so long, but I finally understand why I’ve always felt so different. It’s because I’m neurologically different, and in time I hope to be totally fine with that.

I’m taking a big step being so public about this diagnosis. But ultimately I shouldn’t feel ashamed, and without more women on the spectrum coming forward and saying “this is me” the female presentation of aspergers will be less understood. Meaning more women like me going so long without a diagnosis. Those of you who know me in real life might have a hard time taking this on board, and doubt me, which would be totally understandable. If you have any questions please don’t hesitate to ask.