Opinion: Late autism diagnosis is better than no diagnosis
David Crisp, autism trainer and speaker, candidly shares his experience of being diagnosed with autism in later life and what difference an early diagnosis would have made for him.
22nd June 2022 marked precisely 40 years since my final day at secondary school. This date is forever imprinted on my mind as easily one of the very happiest days of my life!
I remember taking my GCE O Level English Language exam a few months earlier, and one of the essay questions was “School days are the happiest days of your life. Discuss.” After the initial confusion that this question didn’t actually mean discuss (!), I had real trouble answering it. In my childhood experience, school days, especially secondary school days, were amongst the most traumatic periods of my young life.
Autism, particularly high functioning autism, was virtually unheard of in mainstream education in the UK in the 1970s and early 1980s. Indeed, it would not be until 1981 that the term Asperger Syndrome was first popularised by the late psychiatrist Lorna Wing. Consequently, a whole generation of late diagnosed autistics went through our entire childhood, and much of our adulthood feeling isolated, confused, bullied, misunderstood, lost, angst- ridden, or full of self-loathing.
At school I struggled both educationally and socially to fulfil my potential. I was a bit of a loner, with few friends, all of which I would confidently describe as being if not autistic, then certainly neurodiverse! We all had narrow interests, were universally poor at sports and had a preference for solitary pursuits. Although we were probably of above average intelligence, we struggled to achieve our expected academic grades due to the social and sensory difficulties of being in an overcrowded, noisy and hostile environment.
By being educated in a secondary boys’ school, I rarely met or interacted with girls of my own age-a factor that would affect my ability to form romantic relationships with the opposite sex for a number of years.
At college, I was able to engage with girls of my own age but found this to be difficult initially due to this experience. However, as I was undertaking a Preparation for Nursing Course, most of my college classmates were female and in one subject, I was the only male in the class! Having older sisters and a previous poor experience in school, the commonality of the course content helped some class friendships to develop. Much of the alienation I had felt at the Boys’ School was much less severe in this college environment. I was also only taking the qualifications that were relevant or interesting to me, so academically I thrived. To this day, I have not failed a single theoretical exam or qualification since leaving school in 1982.
As if proof was needed, this demonstrated that it was the environment that impacted upon my academic success, rather than any deficiency in myself, although at this time, I could not fully understand the reasons for this.
During the mid-1980s, I went to Leicester to train as an RGN Nurse. The hospital environment had been like a second home to me growing up as my late father had frequent hospitalisation, so I found the environment itself reassuring. However, during my final year, my father had a period of sustained ill health, and there had been some irregularities around our final exams. Together, these resulted in my having what I now know to be autistic meltdowns.
Consequently, my nursing career ended in 1988 and I went through a period of self-loathing and depression. Had I been diagnosed as autistic as a child or in early adulthood, much of the difficulties I experienced in the first 3 decades of my life could have been looked at differently, with undoubtedly better outcomes. Instead, these difficulties were attributed as my personal failings. I had also compartmentalised much of my friendships. By this I mean that I left behind my school friendships when I left school, and likewise with any college or nursing friendships. This left me alone, and feeling virtually friendless, without the social skills to easily form new relationships.
At aged 28, I was to meet my future (and current!) wife, and fortunately for me, we had travelled on the same bus to college all those years ago, so we had that history. We were also both seeking commitment and were happy on our own or just being in each other’s company.
We married within 2 years and had 2 children before the millennium. The pressure of being a father and main wage earner hit me when my son was a baby and an intense period of workplace bullying led to my attempting suicide. Over the next few years, our marriage was tested further as both children were identified by their health visitor to be showing early signs of autism. A plea for help for our children from our local authority, led to accusations of “exaggerating their disabilities” and false accusations of FII (I have an earlier article about this in Social Care Today).
Although this experience was traumatic and the worse year of our married life, it was my decision to fight this perceived injustice with hard facts, rather than just emotion, which led to an enforced psychological assessment, which suggested presence of autistic traits. A voluntary referral for an autism diagnostic assessment led to a diagnosis of Asperger Syndrome.
Finally, all those historic difficulties in social communication and social interaction, my special interests, ritualistic behaviours, sensory and environmental issues were all starting to make sense.
Clearly, my lack of an autism diagnosis, years of masking my behaviours and the intense exhaustion, anxiety and social isolation had had a significant negative impact on my mental and physical wellbeing. At the time of my diagnosis, I had been suffering from depression and anxiety for nearly a decade and from the debilitating condition of chronic fatigue syndrome for two years.
Although being incorrectly placed on child protection for a year, it did lead me on the path of my self-discovery through my receiving an autism diagnosis. I was aged 42 when I was diagnosed, and it felt like a great weight had been lifted from my shoulders.
I left school just as autism was beginning to be recognised as not solely limited to individuals with a learning disability, and the term Asperger Syndrome was beginning to gain publicity, so it would have been highly unlikely that the difficulties I faced as an adolescent would have been clearly identified, let alone understood by anyone at that time.
Looking back, what difference would it have made to my life had I been diagnosed earlier?
I would have known the reasons for my mental turmoil, why I had difficulties in forming or maintaining friendships, why changes of routine and crowded environments made me so stressed and why masking in an attempt to “fit in” left me being bullied or feeling totally exhausted. Undoubtedly, school may have been more bearable and my life chances may have been different had my autism been recognised . However, despite all of the pre-diagnostic “grief” and angst, I may have not met the lovely lady who has become my wife of 26 years, and had the 2 wonderful children that I have.
Neither would I have met so many incredible autistic individuals and their families through being part of the autistic community.
If anyone reading this is considering a referral for an autism diagnostic assessment as an older adult, I would encourage you to go for it! Autism is not a disorder, and most certainly not a tragedy. I grew up thinking that I was defective in some way and was bullied at times for being different. Diagnosis puts a name to that difference and enables autistics to accept and embrace our neurodiversity. We are not defective, but simply wired differently.
I am “Wired 4 Autism, ”and that’s a good place to be!
Photo by Taylor Wilcox