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.
This is beautifully written and very well said. Well done, brave Ella x
Thank you awesome Kate!
thank you Ella for your brave and honest post
Well done for writing this down. And thank you – I think I need to finally go and seek a diagnosis as so much of that I could relate to.
That’s great Joy, I hope you find the answers you need.
Thank you x
hi Ella, I think this is a great step forward, like you I always questioned the bipolar diagnosis it just didn’t quite seem to fit. I wish we’d had this diagnosis at uni – or at least that I’d had more understanding of and insight into your challenges. Personally I always thought you were “gifted” and had hyper sensory issues. But then who am I to label and judge? I admire your quest to improve your understanding and help others along the way. I’m really proud of you for going public on this xxx
Thanks Leanne, oh yes university could have been a lot easier with this knowledge. That said at least there I had a group of close, caring, friends (including you) who tried to understand and accept me regardless. University is one of my happier times because of that, and all the dancing.
We all loved you so much Ella, it was just a shame I knew nothing about things like Asperges then. As I got older I always felt like I let you down through lack of knowledge. But hand on heart I tried my best. We had amazing times xx
We absolutely did, I’d actually really like a little reunion at some point, miss you and Tabby particularly.
Me too it’s been20 years!!!
Goodness, you write well! I’m so pleased you have a proper diagnosis and can begin to explore you. I look forward to reading more about your journey xxx
That compliment, coming from you, has really made me smile. Thanks Chris.
What a star you are Ella. Reading this is very helpful as I am currently struggling with trying to get an assessment for someone who sounds sooo like you! Now I am even more determined to push ahead. The attempted climb out of eating disorder is extremely difficult when noone in the service will let you talk facts and figures and family therapy is a nightmare!!
Beautifully written Ella xx
I’m glad you’ve finally got a diagnosis you feel really makes sense to you. I’m wishing you all the best, Ella x
I was diagnosed a month a go and I find it hard to understand myself even though I’ve lived with it all my life. This post helps and I can never seem to tell any one anything. I can’t even tell my doctor anything because I don’t know how too.
That sounds difficult, I hope, in time, you find a way of communicating more easily.
Phew! Glad you now have a diagnosis; I only wish it had been given to you earlier in life. It wouldn’t have changed you, but it may have made some things easier. Who knows. It’s so common that girls are less ‘obvious’, and missed – they tend to be better at masking the social difficulties. Hope you find some good support when you need it x
Thank you, yes I think that’s definitely true. Plus when I was younger aspergers wasn’t being diagnosed.
This has been on my mind constantly since we had the conversation a while back. I did some research and talked it through with Bex. A lot matches not all though, she is very disorganised!
We have an appointment next week to reassess Bex’s treatment. I actually fear I will get a negative response from CAMHS for Bex to this but we will see.
So glad this is helping you understand yourself and therefore make life easier for you in the future. I am using your positive story for Bex, I would love you to meet her one day xxx
Thanks Ali, I’m glad to hear you gave it some proper thought. As a child I was also very disorganised, and constantly losing my stuff. This is why my organisation systems are now so rigid, for fear of not managing otherwise. I’d love to meet her, and wish her path was a little easier, but that with the right help sooner than I got it she will find her way before too long.
So glad you finally have a diagnosis that makes sense… hope things do start to get a little easier and you can stop beating yourself up about things xxx
Thanks Mandy, me too x
It is good that you finally have a diagnosis! Good for you for sharing x
beautifully written….. well done you. onwards and upwards.
Indeed, thanks Gemma.