My Journey to Understanding Autism
By Meredith Bryan
I was surprised by my reaction to my son’s autism diagnosis. Even though I entered our paediatrician’s rooms expecting him to confirm what we already suspected, I still wasn’t prepared for the shock and grief that I felt and would continue to experience for months afterwards. Our doctor opened the most recent Diagnostic and Statistical Manual of Mental Health Disorders (DSM-5) and together we went through the list of characteristics for autism spectrum disorder (ASD). I remember his question: “Are you sure you want this diagnosis, as it will be with him for the rest of his life?” This surprised me. Whether we formally recognised Angus* as autistic** or not did not change the fact that it is a part of who he is. The little boy who walked into the paediatrician’s office with me was the same little boy who would be coming home again. He was still Angus with or without that label. This is a truth that brought me much comfort, although if I am honest, my original plans for my son’s life (and my family’s too) did not include autism.
Over the next six months I read anything I could get my hands on to try to better understand what was happening in my son’s brain. I wanted to make sure that we were doing everything possible as a family to address Angus’ challenges and support him. I also wanted to try to alleviate some of the uncertainty in my own mind over what life might look like in the future for Angus. I really struggled with the uncertainty of it all and still do. The daily unpredictability of Angus’ reactions to his environment is heartbreaking and exhausting. It can result in great distress for him, and many challenging behaviours. It challenges my trust in God and reminds me daily that my life is not my own and it is He who directs my steps (Jeremiah 10:23).
The autism diagnosis was helpful as we finally had an explanation for all the other challenges that we couldn’t seem to put our finger on. We had already had many other diagnoses and years of therapy. This was the final piece of the puzzle in understanding Angus. Or maybe just the beginning of a new pathway and a whole lot more learning! I did feel some guilt, however, that Angus was 7 years old when he was finally diagnosed with ASD. I now realise that I am not alone in feeling this way as I have since had many conversations with other parents who also feel guilt over their child’s ‘late’ autism diagnosis. The most common age for Australian children to receive an autism diagnosis is just before their 6th birthday.[1] One explanation for later diagnoses of autism is co-occurring conditions. In a large-scale US study, 95% of children on the spectrum had at least one co-occurring condition with many having 5 or more[2]. Autistic characteristics are often masked by co-occurring deficits in attention, cognition, language or motor ability. Another study[3] found that it took an extra 1.8yrs for children with ADHD to receive an ASD diagnosis as the symptoms are so similar.[4]
Angus received his ADHD diagnosis at age 5, and just a few months later we were told by a psychologist that “he didn’t have autism.” I assumed that the psychologist had screened him for autism. It was only years later that I came to understand that this was just her professional opinion. Angus had not been officially assessed using the Autism Diagnostic Observation Schedule-Second Edition (ADOS-2), the Social Attention and Communication Surveillance-Revised (SACS-R) or the Autism Diagnostic Interview-Revised (ADI-R). It would take another two years and the negative impact of two Covid lockdowns to really highlight Angus’ autistic behaviours. This story of missed diagnosis is not uncommon.
What I have now come to understand is that we had been treating the symptoms of autism and many co-occurring conditions for years before we had our diagnosis. The ASD diagnosis helped to explain why Angus screamed for 18 hours a day for the first 4 months of his life, and why as a toddler he took an hour to go to sleep in the day and a further hour and a half every night (sleep disorders are common in ASD). Angus also didn’t babble as a baby like his brothers; he was unable to form sounds and then later struggled to blend them into mono and then multi-syllabic words (language disorder). His clumsiness also worried me (movement and coordination disorder), resulting in multiple surgeries, stitches, glue, and visits to the emergency department. This persisted even after he was diagnosed with very poor eyesight and prescribed glasses (also common in autistic individuals). Some other co-occurring conditions for Angus are anaphylaxis, cognitive difficulties in working memory and processing speed, and challenges with reading (phonological awareness). This list goes some way towards explaining the diversity of profiles amongst individuals on the autism spectrum, yet these are only the additional conditions that accompany autism, not the core characteristics of the condition itself.
The core characteristics of ASD fall into two domains: social/communication and repetitive patterns of behaviour. The first domain includes difficulties in starting and maintaining a conversation, nonverbal communication, and developing and maintaining relationships (APA, 2013). The second domain covers repetitive behaviours, interests, and activities. In order for an Individual to be diagnosed with ASD they must experience at least two of the following four characteristics:1) stereotyped or repetitive behaviours; 2) insistence on sameness; 3) special interests; or 4) unusual sensory reactions. ASD is a spectrum condition, meaning people experience a wide range of characteristics. Severity ratings from 1 (requiring support) through to 3 (requiring substantial support) were also introduced in the DSM-5 to reflect the variability of the condition. A person on the autism spectrum can experience symptoms differently even within the same day depending on their environment and how they are feeling.
The differences in how individuals experience the core characteristics of autism and its co-occurring conditions, are a reminder that each person is unique. As the saying goes: ‘If you’ve met one person with autism, you’ve met one person with autism!’ This is significant as all too often generic labels and accompanying stereotypes are applied to people with disabilities. Contrary to popular belief, most individuals on the spectrum do not possess savant skills like Rain Man or the Good Doctor! A true understanding of autism reminds us to look at the individual person’s strengths and challenges. Angus has both and has recently been sharing his growing understanding of himself with his friends.
I am writing this after what has undoubtedly been our toughest year. The lockdowns were especially difficult for someone who prefers predictability, and they exacerbated Angus’ already challenging behaviour and sleep issues. The return to school then increased Angus’ school avoidance and anxiety. Yet it has also been the year of greatest gains for my son! Angus was able to engage in imaginative play on his own for the first time (with LEGO of course!), shared his love of the Lord Howe Island Phasmid (a giant stick insect) with his peers as part of his school’s public speaking competition, and had a birthday party with his own friends. As Angus’ awareness of the world around him increases so does his anxiety. However, the greatest protection over his mental health is his love for God. Recently, when Angus was extremely distressed I cried out to God for help. I was able to share Philippians 4:6-7 with Angus by explaining that he was currently holding the ‘worry’ card in his hands (think Pokemon trading cards) while Jesus stood in front of him hand outstretched offering Angus the ‘peace’ card. I explained the worry card is quite common as most people have it and it’s worth very little while the peace card is rare and valuable but you can’t accept the peace card from Jesus without first handing over the worry card. It took a while but I knew Angus had completed the transaction with Jesus when I felt his little body relax next to me.
I am grateful that our God gives wisdom to overwhelmed parents and that His gift of faith knows no bounds. I am also grateful for Angus’ diagnosis which has opened opportunities for support including NDIS funding for therapy and assessment, greater understanding from his school, access to specialist medical professionals, information, further study, and a supportive community of people living life on the spectrum. Although we wouldn’t have chosen this path, God is guiding us along it for His name’s sake and refreshes our souls each day (Psalm23:3).
*I am conscious that I am telling a shared story. Although my son has given me permission to share aspects of his life and he has chosen to tell others about his diagnosis, I will not use his real name to give him some privacy.
**I recognise that there are a variety of opinions regarding the terminology used to refer to individuals on the autism spectrum. However, identity first language appears to be the preference of most people in the autism community.
[1] Bent, C. A., Dissanayake, C., & Barbaro, J. (2015). Mapping the diagnosis of autism spectrum disorders in children aged under 7 years in Australia, 2010-2012. Medical Journal of Australia, 202(6), 317–320. https://doi.org/10.5694/mja14.00328CA
[2] Soke, G. N., Maenner, M. J., Christensen, D., Kurzius-Spencer, M., & Schieve, L. A. (2018). Prevalence of co-occurring medical and behavioural conditions/symptoms among 4- and 8-year old children with autism spectrum disorder in selected areas of the United States in 2010. Journal of Autism and Developmental Disorders, 48(8), 2663-2676. https://doi.org/10.1007/s10803-018-3521-1
[3] Kentrou, V., de Veld, D. M. J., Mataw, K. J. K., & Begeer, S. (2019). Delayed autism spectrum disorder recognition in children and adolescents previously disgnosed with attention-deficit/hyperactivity disorder. Autism, 23(4), 1065-1072. https://doi.org/10.1177/1362361318785171
[4] Sokolova, E., Oerlemans, A. M., Rommelse, N. N., Groot, P., Hartman, C. A., Glennon, J. C., Claassen, T., Heskes, T., & Buitelaar, J. K. (2017). A causal and mediation analysis of the comorbidity between attention deficit hyperactivity disorder (ADHD) and autism spectrum disorder (ASD). Journal of Autism and Developmental Disorders, 47(6), 1595-1604. https://doi.org/10.1007/s10803-017-3083-7
Meredith is a proud mother of four boys (and no, she didn’t keep trying for a girl!), and is married to Steve who is a minister in a multicultural church in South Sydney. Meredith has a background in education and loves reading the Bible one to one with other women. She is currently researching the perspectives of culturally and ethically diverse Australians on autism.
The views and opinions expressed on this site are those of the authors and do not necessarily reflect the official position of The 139 Collective. As a collective, we seek to humbly learn from each other’s experiences and remember the unity that we share in Christ even when our current viewpoints on the difficult topic of disability differ.
