My Autism Diagnosis Story
By Blake Ali| Published on June 8, 2021 | 8 Minute Read
Hi there, my name is Blake Ali, I’m twenty-eight years old and currently a full time student studying BA Cinema in the UK.
I was bullied throughout primary school up until year 8, when my parents decided to home-school me as they could see the effects that it was having on my mental health. I grew up in white areas with little to no representation and always thought that the bullying was connected to racism. However, I now realise that it was also because I was seen as different by everyone around me.
Life had been incredibly lonely, and I had spent the majority of my teenage years speaking to people online as a way to connect with others as I didn’t have friends in real life. At first both my parents and I thought that my issues were solely mental health based as I had anxiety and experienced panic attacks since I was a child. I was diagnosed with an eating disorder, depression, anxiety and OCD at the age of sixteen but was never treated for any of the diagnoses. Even with these conditions, I still felt that something else was inherently different about me but I didn’t have a name for it at the time.
In my early twenties I was diagnosed with BPD and originally thought that this diagnosis was the missing piece. At the time of diagnosis, I had every trait and even my parents thought that at long last I could be understood. However, this still didn’t explain all of the other parts of me.
It wasn’t until 2018 when I watched a YouTube video of a girl who was diagnosed as autistic later in life, that I questioned whether I was also on the spectrum. I didn’t know what autism was at that point, but I identified with everything she said. I told my husband that I thought I was autistic but he also didn’t really know anything about it, so we didn’t move forward with seeking an assessment until a year later.
Throughout that year I took online diagnosis tests and would always be placed in the autistic range. Although these tests aren’t professionally recognized, it helped to confirm my belief and encourage me to seek a professional diagnosis. During this time, I watched several other YouTube videos and was blown away with how much it all resonated with me. My husband started doing his own research during this time and began to apply autism-specific coping skills to his caring duties and as a result we saw a dramatic improvement in my overall wellbeing.
It wasn’t until 2018 when I watched a YouTube video of a girl who was diagnosed as autistic later in life, that I questioned whether I was also on the spectrum. I didn’t know what autism was at that point, but I identified with everything she said.
In 2019, we finally decided to seek a diagnosis and went through the self-referral process to the Integrated Autism Service. This wasn’t as straightforward as we thought it would be as I was under the care of Secondary Mental Health; the Integrated Autism Service felt that they wouldn’t be able to help me because I was being treated for other diagnoses at the time. My husband ended up having to file a complaint as we were being passed between the two services with no one knowing how I could be assessed. Eventually in 2020 we were contacted by a specialist who began the assessment process with me in the summer, and the next few months were filled with forms, phone calls and finally the face-to-face assessment.
As all of this was happening during the pandemic, the face-to-face assessment took place in our home with social distancing and PPE in place. It was the first time in my life where I fully dropped the mask and allowed myself to be visibly autistic. All of the traits that I had learnt to hide from a young age were now visibly present and the wonderful doctor who assessed me made me feel seen and heard for what felt like the first time professionally.
After a few weeks, I received the diagnosis in October 2020, and everything changed from there. On one hand it felt incredible to be understood and to finally have a name for what I had experienced my whole life, but on the other hand I dealt with a type of grief for the younger version of myself who wasn’t understood. I started to experience traumatic flashbacks and found them difficult to process as I now realised why my attempts at higher education and employment had failed so many times. I had spent over a decade on numerous medications and had been in and out of hospital for a number of years, and struggled with the fact that if I had had the diagnosis and support earlier in life this could have all been avoided. It seems as though because I didn’t fit the societal stereotype of autism, it was never seen as a possibility for me even though it was blindingly obvious. I also felt overwhelmed by the reality of living with a lifelong diagnosis and spent a vast amount of time trying to come to terms with the fact that this is a condition that couldn’t be treated and that there was little to no awareness, especially surrounding autistic women.
After several months of coming to terms with the diagnosis, my husband and I decided that we wanted to create an Instagram account where we could share our experiences and spread awareness. We wanted to provide information for adults with autism and for those with neurotypical partners who also act as their carers, like my husband does for me. We haven’t had the account long but have already received numerous encouraging comments and messages from those who relate to our experiences. This project has encouraged us to become part of the online autistic community – a space where we feel comfortable and able to easily relate to others.
Our unique relationship and carer dynamic allows us to share both sides of our relationship and we hope that in doing so we can encourage others to open up to non-traditional narratives, such as being a carer for a disabled spouse or partner. Our mission is to help autistic individuals (whether diagnosed, self-diagnosed, or questioning) and be a part of the change towards neurodivergent people being accepted in this neurotypical world.
About the Author
Hi, I’m Blake and I was diagnosed with autism at the age of twenty-seven during the pandemic last year. I’m currently studying Cinema at University and have recently become an advocate for autism and other comorbid diagnoses, such as OCD.
You can follow Blake on @marriedlife.autisticwife!