Wednesday, 9 August 2017

The Longest Journey I Ever Took: My Autism Diagnosis



I have never been 'normal'. When I was little, instead of zooming my toy cars around the room, I lined them up in long traffic jams and made them queue in an orderly fashion for hours as I inched them forward slowly one by one. When I went to the doctors and they wanted to put a stethoscope on my chest, I started screaming and didn't stop for an hour. If we went to town and I was in my pushchair, and town was busy as town will be, I would scream and cry until we went home. At school I would circle the edge of the playground, talking to myself and ignoring the other children.

As I got older, my mum noticed all these things in me. She knew something was not quite right with me. But my father's brother had had a hard time growing up- he had very likely had autism, but in those days autistic people were not treated the way they are now. My father didn't want a diagnosis for me, as he was scared that the world would become an even scarier place for me. In his own way, he thought he was protecting me.

As I entered my teenage years, my eating disorder developed and I became anorexic. At one point I was so thin and poorly that I had to be admitted to a hospital, and I stayed in various hospitals for two years. The focus of health professionals and my family was on keeping me alive, and not much else.

My dad died after a very long, brave battle with cancer when I was still in hospital at 14. When I left hospital at 15, I spent a year at home, and then due to family issues I left home at 16. Again, all my attention and that of anyone caring for me or working with me, was on keeping me afloat financially, and in terms of my health.

My various 'quirks'- not giving eye contact, dislike of social contact, difficulty relating to other people, avoidance of crowds and noise- were either ignored or blamed on other things. The problem is, girls are so much less likely to be diagnosed with Autism than boys. Whether that is due to diagnostic manuals being biased towards boys, research being focused on boys, diagnostician bias, or a combination of those things and others, we probably don't know yet.

As I reached my mid twenties I still struggled with depression and OCD. But these are separate to my autistic traits and it was a battle with doctors to make them see!

I had been thinking for quite a long time that my issues may stem from being on the Autistic Spectrum, but I was reluctant to suggest it to anyone for fear of being ridiculed. I am, without wanting to sound conceited, a fairly intelligent person who can mimic the appearance of near 'normal' for maybe ten minutes at a time if I expend great effort. There is a big false stereotype amongst even qualified health professionals that one cannot be autistic without having an intellectual disability or being completely non verbal. The fact that I could be eloquent at times, or display empathy, seemed to count against me. These people forget that girls and women have it drummed into them by society from a young age that they must always be kind, sociable, ready to entertain, etc. What they don't realise is that a lot of autistic women are coasting along, exhausting themselves as they try to mimic social aptitude.

When I finally did broach the topic to my psychiatrist, she reacted quite badly. She seemed almost personally offended that my mother and I wanted an assessment, and she even resorted to various threats to withdraw parts of my current treatment if I insisted. Suffice to say this doctor is no longer my doctor. Still, she managed to delay my referral for months and tried to say that I just had a 'difficult personality'.

Finally, I came to be assessed. It was difficult, and scary, and I was so afraid. But they diagnosed me. They said I had Autistic Spectrum Disorder. They gave me a reason why I am who I am.

For you see, doctors tell you you shouldn't want a 'label'. But I wanted it! I wanted a reason for why I felt like an alien dropped off on the wrong planet. I wanted to know why I found it so hard to make friends, get people's jokes and tell if they were lying, understand social cues and go to busy and loud places. Why I just did not 'get' the world. And I had been floating, alone and afraid in this wilderness for my entire life. They fished me out, dusted me off, and gave me a reason.

And that was the longest journey I have ever taken.
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6 comments

  1. You are such a brave person to share your story. And an amazing and inspiring human being! You have gone through so much in your life, yet here you are, fighting your battle with such a grace! You should be really proud of yourself.

    Julia xx
    theglassofclass.com

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  2. Honestly, you're such a brave woman in my opinion. I'm here if you need someone to talk to. Stay strong! ♥
    Lauraconteur ♥

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  3. Good heavens, it's so awful that you faced all this resistance from doctors! Seems like it violates that whole 'first do no harm' rule...

    But I'm glad you've finally gotten the explanation you've been looking for, and I hope it helps you find more answers and resources!

    xx
    Emily
    emilyhallock.blogspot.com

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  4. I'm so sorry that you've faced this alone and not had the best experience especially with doctors - I do have to say though I do know more males diagnosed than females!

    Kayleigh Zara 🌿www.kayleighzaraa.com

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  5. Oh Izzie, I had a huge lump in my throat reading this. You are a lovely, kind, brave girl and I'm so happy to be getting to know you. Thank you for sharing your story, particularly with regard to society not assuming autistic people are fine just because they can put on a front sometimes. I'm very glad you've found your reason but please don't let it define you, you are so much more than any label XXX

    Lisa | www.lisasnotebook.com

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  6. You are so brave for sharing your story! Glad you now have comfort in the way you are but everyone is their own person, don't ever let anyone belittle you because you are now under a label. xo
    Lily | www.covetluxe.co.uk

    ReplyDelete

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