Thursday, February 14, 2019

The Journey...

A timeline..... I knew I was different at high school, I went to college for 4 years, I worked various jobs and through it all for a very long time I felt like I didn’t quite fit in. There were programmes shown on Channel 4, online tests....people say we’re all on the spectrum. A vague explanation for all my quirks and eccentricities.

Fast forward to 2015 where my eldest started senior school and went through some ‘difficult stuff’ and eventually by 2016 I saw a 13 year old who reminded me of my 18 year old self. It was weird, I felt like I understood but still didn’t have a name for it. There was horrendous behaviour, challenging difficult stuff, meetings, referrals and a report from an educational psychologist. We moved house, things got worse instead of better, I got worse too.

It was a slow trickle at first, like breadcrumbs through the forest, a trail I was following, clues, pieces of a bigger picture.

I’m not quite sure when the eureka moment happened exactly (it was possibly July 2017, there are notes but I’ve had a giant of a day and just need to get this down). I was joining the dots, reading stuff online, what was ‘up’ with my teenager.... I started reading about Aspergers, teenagers with Aspergers....this then led on to how females with Aspergers are very different in some ways to males....some helpful women have blogs, and checklists and all the pieces start to fall into to place. I cry off an on for around 3 days....I tick a lot of boxes!

What next....well you process the information, you think about things. You talk. By August I decided I had enough to speak to the dr about a diagnosis for me. There was a Referral.

I think if it was just me and my husband diagnosis wouldn’t be as much of an issue, but it’s to validate who I am, there’s another younger child who sometimes has difficulties and traits, they may come to nothing, I have a better awareness now. People need to see and understand that autism has many faces.

Last April there was a 2 hour ‘pre diagnosis’ meeting! Like a stressful job interview off you go to talk about yourself and your childhood, teenage years, work life, how things have been and hope to make it onto the waiting for assessment list.

A nail biting week, wondering if I had said enough, finally after thinking about it over a weekend an email sent expressing a little anxiety that there was so much email back saying I was going on the list. A sigh of relief!

Quietly waiting, you understand yourself better, there are forums, other women, older women, different faces, similar stories, coming out of the shadows.

So here I am, last Tuesday I received a letter to say I was at the top of that list, a bit of a surprise....and  this morning I had the first of 3, 2 hour meetings. By  March 7th there will hopefully be an answer.

To be diagnosed you have to fulfill a ‘triad of impairments’. A person will usually be assessed as having persistent difficulties with social interactions and social communication, restricted and repetitive patterns of behaviours, activities or interests since early childhood, to the extent that these limit and impair everyday functioning (borrowed from the National Autistic Society)

Here I am almost at the end of my journey of self discovery, except it won’t end, and today I had to consider a question, posed by the Dr assessing me, about what happens if I don’t get diagnosed. This feels like a giant thing...that I need the answer to, and that’s why I’m here to talk about it and reassure myself I’m going to be ok with it, either way. Let’s say this triad is 75 tick boxes, I’ve come this far....because there is something there, what if I only tick 74 boxes, no cigar, the computer says NO (thanks Clare) I’m still closer to the autistic end of the scale than I am neurotypical. Ok so what is normal anyway, I am still me, quirky, eccentric, clumsy, shy, misunderstood and easily confused.

Back with news when I have something to say.


Sarell said...

I love you for being you. Totally understand the liking to know and the accepting of the " aha moment"

Carole said...

You’ll always be special xx

Anonymous said...

Love you X

Unknown said...

So very relateable. I was diagnosed at 39 also, 8 months ago. I hope you get your diagnosis, it felt crucial to me.