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How Did We Get Here?

by neurodiversitytoolbox

Our Journey to Our Neurodivergent Identities

My journey towards understanding my own neurodivergent identity began in 2019. My son J was struggling at school and had begun leaving the classroom and even attempting to leave the school grounds. It felt like it had come out of no where after a successful first year of school. While I always knew he would eventually be identified as an ADHDer, the idea of autism had never crossed my mind. 

Looking back now, it seems so obvious, but only because I now understand the breadth of differences between autistic people and their experiences. Like most people, I had no idea what being autistic meant outside of depictions on TV and movies. Instead, I was looking at my child who had no obvious stims, no “typical” restricted repetitive behaviours, who was succeeding in school (until now), and it didn’t occur to me that he was anything more than my little energizer bunny. It turns out, there was so much more to him!

I’m thankful for the keen-eyed Psychologist from the Department of Education who suggested we get him assessed and explained why she thought he fit the diagnostic criteria, in a way that meant I couldn’t brush aside what she was saying, because she was so clearly describing my little man. Nothing she said painted him or his behaviour in a negative light and I now realise how unique an experience that is, for a parent navigating the idea that their child may require a diagnosis. Even more unique is that I found a Psychologist who assessed J and provided beautiful, positive feedback about him and what being autistic means for him and who even gently suggested that I may want to look at a diagnosis for myself, and my daughter A (I know, almost unheard of, right!).

 

Image reads “As professionals, we have a responsibility to discuss the genetic nature of autism. At the very least, it helps the newly identified person feel less alone. At most, it means a whole family can feel seen and understood.”

And so began my journey into learning everything I could about autism, and with every step I took, another “a-ha” moment was around the corner, with so many things making sense for both A and I too. Off to the Paediatrician A and I went, meeting with a Paediatrician who said it was unlikely she was autistic, as she made eye contact with me and spoke to me. Mind you, she didn’t once interact or make eye contact with the Paediatrician, and I had a long list of reasons by now, that I felt meant she met the diagnostic criteria. Even childcare was saying she was totally “fine” even though every week I got a call for a head injury of some sort, and despite me explaining how that lined up with multiple other descriptions of A, they just couldn’t see it. 

Then came the reputable Autism organisation who completed the assessment, that I self-referred to, after our lack lustre conversation with the Paediatrician. They decided that she did not meet the threshold for any of the criteria except sensory sensitivities and therefore, she was not autistic. It felt like the end of the road, but I knew I needed to keep pushing. So, I headed to a Speech Pathologist to get a pragmatic language assessment, as I was sure that her social communication was, in fact, a struggle. The Speechie agreed and diagnosed A with a severe pragmatic language delay.  

Reports in hand, I went to see J’s Paediatrician about A and after meeting A, reading the reports and discussing my reasoning for believing she may be autistic, this Paed agreed and diagnosed her on the spot. Little did I know, I was starting to uncover the vast difference between diagnosing boys and girls, without even realising I was doing it. More deep diving ensued around the differences in presentation between males and females, and then even between individuals. I started to see autism for what it was, a brain-based difference, that is not the negative it can be made out to be. Despite never believing it was a negative thing myself, I had encountered so much resistance to diagnosing A and so many comments about “she doesn’t look autistic”, “but he doesn’t rock or flap”, that I really started to see how negatively and narrowly people viewed the autistic experience.

It then became even more necessary to pursue my own diagnosis. Though I was sure I was autistic and didn’t need the validation, I felt that I owed it to my children to show them that we are all the same, we think the same in our house, and while that may be different to other places, we are accepted and loved here, just the way we are. So, after an initial phone conversation with an autistic women and girls “specialist” I was told I would “only be level 1, because you’re married and have a job”. Yet again, despite being “specialists” and well regarded, some of the pervasive misunderstandings persisted. 

I did get my diagnosis and did excitedly share it with my kids, who were now 8 and 5, but it made me even more determined to share my new knowledge of autism and autistic culture with everyone I encountered, professionals, teachers, friends and family. I didn’t want the outdated ideas that made A’s diagnosis more difficult, to persist. I also didn’t want other children to experience the school related challenges J had. 

I was constantly advocating in the school space, and it was exhausting. I was just lucky I had already been a Social Worker for over a decade when J was identified as autistic. I had been working in a trauma informed way with children and families and understood that there was no such thing as a bad child, I didn’t believe in bad behaviour, only in a child communicating an unmet need through their behaviour. It was the perfect set up for what was in front of me and inspired me to take on a Psychology Internship with an NDIS (National Disability Insurance Scheme) Provider and so began my journey to becoming a neurodiversity affirming therapist.

It’s what eventually led me here, to create this space for other therapists to find the resources that I carefully curated over years and years of research and experience, but without all the time and hard work!

Note on terminology: In this piece I talk about diagnosis, because it was my initial journey and was the terminology used with me at the time. However, many autistic people like to use the term identified and I prefer it myself too. Being identified as autistic is not like being diagnosed with the flu, or cancer, or something else that did not exist in you previously and requires treatment. Autistic people have always been and will always be, autistic and so “identified as autistic” is a better fit. It accounts for the fact that it was a realisation that occurred about something that has always been present. Therefore, identified as autistic will be the terminology you see me use most often throughout the site.

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