As a person with a physical disability, I can understand how some people may view me only in that way, and not as someone with a less visible, less obvious neurological condition such as autism. Indeed, this has been the norm for most of my childhood, until I officially received my autism diagnosis just prior to turning 18.
Before then, people only viewed me as being blind which, while technically true, is only a part of who I am as a whole. Often displaying certain behaviours which I imagine, from experience, to be uncharacteristic of many other blind or vision-impaired people, others just took it as a sign I had been through a lot as a young child, and that this was who I’d become as a result.
In fact, I can confirm this by saying that several psychologists I’d seen as a child assumed this to be the case, simply stating that I had been exposed to much medical and emotional trauma throughout my cancer treatment, and as such was trying to cope in a way that made me feel most comfortable.
But even then, my parents always suspected that I may have actually had autism, as I was exhibiting specific behaviours and traits typically associated with autistic children. These included frequent overwhelm in response to certain situations and environments, occasional tantrums or meltdowns when things didn’t play out how I wanted or expected them to, partially anti-social tendencies around others my age, and obsessive attitudes towards things such as lifts, trains and toys atypical of other “regular” children (all of which I have written separate articles about).
During my time in school, I often felt estranged in some way from my peers, and not just because of my blindness. I knew there was something different about me: something that certain people saw as strange, others perhaps even feeling sorry for me. But I just couldn’t work it out aside from my physical condition.
I was never able to fully connect with friends when it came to fellow interests; instead I would mostly spend time with them and just hang out, never really getting involved in the same things they liked. But I digress, as I have already spoken about my childhood social experiences in a previous article.
As part of a curricular program I was attending at the time for blind and vision-impaired students in both primary and high school, myself and other participants would have group sessions with a childhood psychologist specialised in working with children with vision impairments, aimed at perfecting social skills and interactions.
As someone who has worked with many vision-impaired children throughout his career, he was easily able to spot my then-undiagnosed autistic behaviours and characteristics, and told my parents he suspected I did in fact have autism.
It was at least another five years after that before I started seeing a new psychologist, one who works with behavioural conditions in children. It only took her minutes to come to the realisation that I may indeed be on the autism spectrum, not suffering from childhood trauma as other psychologists had concluded.
After the next couple of years spending more sessions with her working on my behaviours and social skills, we were finally successful in getting an official autism diagnosis, along with the aid of a paediatrician and speech pathologist. It may have taken nearly a decade (if not longer for my long-suspecting parents), but at last we had validation after all that time.
To this day I am still seeing that same psychologist, and I am truly grateful to her and the others who helped my family and I realise why I am the way I am, and for bringing closure to years of doubt and questioning.
I am now able to look back on my childhood and understand the reasons as to why I was so different from my classmates. The tantrums, the meltdowns, the overwhelm… it wasn’t my blindness and the subsequent “trauma”. It was the underlying autism that no one but my parents and select others were able to detect and fought so hard to be recognised.
For anyone out there who may be experiencing a similar situation to what my family and I went through, please know that you are not alone. If you are reading this and have a child or know someone similar to what I’ve been through, whether they have an existing disability or not, whether they show subtle or clear signs of autism but haven’t been officially diagnosed, know that you are right to question what is going on.
It is alright if you suspect they may have autism or another neurological condition, but don’t know for sure. It is alright to go to several different doctors and specialists for their individual opinion, as one may not always have the right answer. And it is important to be understanding of your child and their needs, as well as how others around them perceive and treat them based on how they act.
– Sam Valavanis
A List Ambassador
