It’s been almost three years to the day since my husband and I sat in a university assessment room with our almost three year old son; where we were informed he was autistic. I look back on this day – how it shook me, the anxiety, the sadness, the unknown of it all, and although not completely gone, I have been able to put it in its place. This has been a process of trial and error, of self reflection, of replacing my assumptions of what it means to be autistic – from that of something that needs to be ‘fixed’ to something that simple ‘is’.
Due to my professional background this has been a challenge, however I made the decision early on in our journey not to incessantly read. I remember picking up my copy of the Diagnostic and Statistical Manual and beginning to read the criteria for autism and I quickly put it down. I did not want it to taint the way I viewed my son, to fall into analysing every move he made, wondering if what he was doing was ‘normal’. These were my first steps in exploring, in accepting his difference.
Early on I scrambled for information on what therapies we ‘should’ be accessing for our son. My inclination to charge in and ‘fix’ my son was tempered by our first encounter with an Occupational Therapist in an Early Intervention Centre. I started asking her what type of things she does to help autistic children and what behaviours she targets? She was very gentle but direct in her reply. She said to me ‘Unless there is something that is challenging for your son or your family, why would you target or change it?’.
This immediately resonated with me. Why would I change the way he is unless it was distressing for him? What was the point? To fit in? To fit into what? Who defines what is ‘the’ way to go about things?
From then on we decided to take my sons lead, using this to decide on what therapies we would access, not to ‘fix’ him, but to assist him in developing in a way that suited him and his learning style.
For example he showed a want to communicate verbally, so we started Speech Therapy, which has helped him develop his language, but is mindful not to correct his verbal stimming (sometimes he almost beatboxes, other times he sings when excited) or demand eye contact from him. When he started Kinder he has shown a strong desire to interact with the other children and wants to participate in group activities. So we engaged an Occupational Therapist and Key Worker to not only assist him within the kinder group but educate the teaching staff on how to modify the activities to be inclusive of him. This has continued as he started school this year, always with the objective of respecting his neurology, of respecting him as an autistic individual.
As we have continued our journey I have allowed my self to start reading again, but not diagnostic or medical material. Instead I instinctively started seeking out the voice of autistic adults, reading their stories of growing up, of accessing therapies, of what they would have changed if there was more acceptance of their difference. For me this has influenced a major shift in how I walk alongside my son as he enters education and as he grows, of how we interact as a family, of how others interact with us and the expectations I now have of others accepting that our lives are different.
I have shifted from wanting to ‘fix’ to a place of acceptance and advocacy. There are no ‘should’s’ for my son or for our family. We will continue to follow his lead. We will continue to not only accept his difference, but celebrate it. It’s taken almost three years to find our way through the ‘should’, through the deficit laden information that dominates the autism narrative, but we got here.