I’ve not written anything for a good long while, I’ve been sitting on something that I wanted to write about before anything else but it just wouldn’t come out. It wasn’t ready. After brewing for a few months today is the day! I have no idea how this will be structured so I’m just going to write and let it tell it’s own story.
Last year my sister sent me a book for my birthday (or Yule, I’m not too sure). It was called ‘The electricity of every living thing’ by Katherine May. I found it to be a lovely but confronting book about Katherine’s plan to walk the South West Coast Path in England and as the journey progressed it intertwined with her realisation and acceptance of a self diagnosis of Autism Spectrum Condition (ASC). The book brought forward for me something that had been quietly chiming in the back of my mind for many years and it brought it forward rather loudly.
I always wondered why I felt like an alien, why my mum always jokingly said I was ‘an oddball’. Why I just struggled with a lot of things. I was drained by people, places, noise, light and chaos. Why I was never able to maintain friendships and why work always made me depressed and anxious and I could never stick at it.
The next domino that fell was due to another book, ‘Unmasking Autism’ by Dr Devon Price. I bought this one out of curiosity, ‘just to see’. Well I did ‘just see’, I bloody well ‘just saw’ myself. I was finally able to affirm to myself that yes I am Autistic (informed self diagnosis is valid within the community and often the only avenue available to people due to the difficulties around diagnosis).
At this stage, I had to think about whether I wanted to pursue a medical diagnosis. For me, I wanted to be sure, I didn’t want to be self diagnosing and becoming part of the community if what I thought wasn’t true, I had a big case of imposter syndrome and didn’t fully trust my own conclusion even though this has been something I have questioned for a long time. But I was bounced around so many therapists and psychologists as an adult and given 5 runs of CBT which never worked, there is an emerging school of thought that CBT is less effective for Autistic people (CBT is thrown at most things and I was craving something more targeted and personalised, I never truly felt that the root of my issue was being looked at). I remember saying to this myriad of professionals that something was being missed, that there was something deep down that needed addressing and not one of them considered Autism. Who was I to argue? I wasn’t the one with degrees in Psychology right? and that then gaslit me into thinking that I was just inextricably broken and there was no solution.
It’s easy to see why my diagnosis was missed, I was female and born in the 70’s (in fact, I read somewhere that Gen X are considered the missing generation regarding neurodivergence diagnosis). Apparently, because girls are socialised differently due to cultural gender norms we are better at ‘hiding’ our Autism, we’re dead good at being quiet and polite and compliant (more patriarchal bullshit). Also, the diagnostic tools used are somewhat outdated, initially Autism was considered a thing that middle class white boys had, so all efforts were put into diagnosing that group, and women, people of colour, trans people and anyone who doesn’t fit into that group were (and still are) sidelined.
I was nervous approaching my GP about getting diagnosed, partially due to the above but also because I’m 46, what the heck am I thinking? Is it too late? But I knew I needed to know. So I psyched myself up for two weeks to make the phone call for an appointment and when I went the Dr had the look of a rabbit in the headlights, I don’t think he really knew what to do with me. After a convoluted series of events that involved being referred, then getting a letter that they needed more info, a form sent to me by the GP meant for him but he sent to me to fill in (I had no idea how to do this, it sent me into a panic, don’t do this to Autistics please), I was finally accepted but the wait was three years.
This is where the privilege of diagnosis comes in, the NHS is a wonderful thing but the mismanagement of it has led to life altering waits for services. There are some people who don’t even get through the first hurdle to get on the list and then those who do have to wait, all the while their heads swirling with anxiety and impatience and frustration. If you do finally get to the top of the list you then endure a fairly bizarre outdated diagnosis process aimed at young boys. Not ideal.
So I went searching, I joined a forum for Autistic people and asked about diagnosis. They pointed me towards the Adult Autism Practice who use a Neuro affirmative approach to diagnosing adults. This is a service you pay for (again a privilege, if you have the funds) I paid in instalments which was a little easier. Was it expensive? For me? Yes. Was it worth it? Absolutely. My sessions were compassionate, affirming and informative.
I was officially diagnosed in August this year, when I was told that “yes, you are Autistic” I burst into tears. I finally knew who I was. The itch in the recesses of my brain had been scratched. Everything made so much sense to me. My childhood, my struggles as an adult. It was so freeing for me.
Diagnosis brings with it many feelings, I was happy, sad, angry and these feelings still continue as I work through years and years of struggle and masking. If only I’d known who I was when I was younger maybe I would have made different decisions and been more comfortable in my own skin. I am aware of the stigma involved in diagnosis, I am Autistic, I have always been Autistic and will be Autistic forever. This will travel with me throughout the rest of my life and will be met with varying reactions as people have their own stereotypes around what an Autistic person looks like and how they behave.
Autism for me isn’t something I’m ashamed of, I know from my brain injury that I’m dis-abled by society. I know now I always have been. That brings up great sadness for me. Put into a box and silenced before I even truly got going. I take comfort in knowing I can now tell the young me, the little girl who couldn’t understand the world, that she was beautiful and valid as she was. That the world wasn’t ready for her but she made it through anyway.
My name is Lauren, I am Autistic and I am now finally ready to claim my space.
The Hermits Grove 