April marks World Autism Acceptance Month, a month dedicated to raising awareness of the signs, symptoms and realities of autism and to promote acceptance.
Here, Prescription Exemption Checking (PECS) team member at the NHSBSA, David Howlett, tells his journey of diagnosis and living with autism.
Hi, I’m David and I’m autistic, although it took well into my adult life before I was officially diagnosed. This was also the case for my partner of 14 years, Helen.
Together, the fact that we have been able to cope as well as we have during the coronavirus pandemic over the past year rather belies the common assumption that those with Autism Spectrum Disorder (ASD) are rigid and unadaptable. Our ability to “mask” our autistic traits and (consciously or unconsciously) and try to force our square-peg selves into the round holes presented to us quite possibly contributed to our late diagnosis.
Growing up, I had loving and supportive parents who fed my growing imagination and love of knowledge with a steady stream of books, documentaries, films and other such media. However, try as they might, my parents could not get my GP interested in looking into their suspicions that I sat on the autistic spectrum, she believed I was merely quiet, bookish and a little anxious.
Things were harder at school. I wanted very much to get to know people and befriend them, but somehow, I always felt like I was on the outside looking in. Even when I did manage to make friends, I always seemed to be the one who didn’t quite fit in, and as I moved from primary to secondary school, those friends I had managed to accumulate melted away. Worse than this, however, was the bullying – both from other children and certain teachers – which lasted through primary school to a few years into secondary school.
Looking back, my autistic traits most certainly intensified as a result, as I became more and more walled-in and metaphorically curled in on myself. It wasn’t until the months leading up to my GCSE exams, a year or so after the bullying had waned to nothing, that I started to come out of my shell thanks to the kindness and persistence of some of my classmates, who I had grown to call friends.
By the time I started university I was much more relaxed and happy; I had friends who accepted me, I was content with who I was and didn’t particularly feel the need to have a label of any form. Even when university turned out to be quite a lonely experience and bit-by-bit I lost contact with many of my existing friends, I did pretty well; those friends I had remaining were supportive and accepting of who I was, my family was as loving and supportive as ever, and with the onset of social media and online communities I was making new friends all around the world – foremost of whom was Helen!
However, a long period of unemployment in my twenties slowly started to affect my mental health, and my willingness to seek official diagnosis. I was content with my self-identity without a diagnosis and had accepted that I was probably on the spectrum somewhere, but at the same time repeated failures to progress beyond interview stage when seeking employment and the feedback being given that I came across with an unusual effect and didn’t seem like the right “fit” for their work environment, was gradually pushing me further and further into depression. I increasingly worried about the possibility that I was *not* autistic, but instead that there was merely something indefinably “wrong” about me.
Eventually, I decided that I needed to know one way or another – reasoning that if I was given a diagnosis of autism, this would count as a protected characteristic and it would have to be taken into account at any future job interviews. As such, I made an appointment with my GP in August 2006 to argue my case. Despite the suggestion that I might be a sensitive and anxious person, my GP eventually referred me to the local Adult Affective Disorders team to start the diagnostic process. In one of life’s little ironies, it was just a few days later that I received an offer of employment from the NHSBSA, the position I still hold to this day!
The diagnostic process was a long one, which began with over a year spent on the waiting list. After a few assessments on a general level intended to rule out various mental health conditions and affective disorders, a referral for autism assessment was warranted. Followed by another prolonged waiting list and further assessments, one comprising an interview solely with myself and another with the presence of mother, so that detailed and accurate insight into my early years and development could be given. Ultimately, the official diagnosis came in April 2018, more than 18 months after I had initially been referred for assessment, that I had autism.
The funny thing is, having started the process still more or less being happy not to have a label and just being happy to be who I was, towards the end of the process and by the time that I received the diagnosis, I very much wanted the label. I am who I am, and the official diagnosis doesn’t change any of this – it just enhances it.