“Nothing within you changes”: Understanding autism diagnosis as an adult

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By Emily Wilson

I knew nothing about autism until the day I watched a woman in her 30s discussing her adult diagnosis on TV. Something about her sharing her preference for sitting in a plain white room compelled me to do some research. I took an online test and saw things that resonated with me as a child and an adult. I thought autism was something only diagnosed during childhood. Studies describe diagnoses are typically reached after the age of 4 in the United States, even though before the age of 2, progression of childhood development is evident and simple to assess. Despite early developmental signs, my family members, early childhood educators, and counselors never considered I may be autistic. It took me months longer than normal to walk; I only ate plain foods; I played with toys in a repetitive way; and I often isolated myself from other children in preschool.

Societally, there is a lack of awareness about common symptoms, alongside the breadth of the spectrum and how differently autism presents in each individual. Neurodiverse people function in a world constructed for the neurotypical. Instead of supporting people to feel recognized, clichés and media tropes, such as sensory sensitivity or lack of eye contact, reinforce a general misunderstanding of the spectrum. There is less awareness surrounding other signs. Some examples can be listening to a particular song over and over, repeating yourself often, or not understanding how to ‘read between the lines.’  I thought needing people to explain jokes to me was due to slower-than-average mental processing.

Women with autism are known to present symptoms differently and tend to have a greater ability to mask in social environments by copying people around them. This can make symptoms harder to recognize, leading to late, false or misdiagnosis. Especially when social anxiety, struggling with small talk, sleep difficulties or stimming can be equally common in a neurotypical population. Something I started to notice is standing or holding my hands the same way as the person next to me. I also often engage in repetitive movements to manage my stress, a common, but not exclusively, autistic trait. VeryWellHealth describes this variation as identifying how instead of why behaviors are modeled.

Some individuals remain satisfied with a self-diagnosis and would rather not receive a definitive answer. In addition to common barriers to accessing a diagnosis, there may be anxiety surrounding the reaction of family members or friends, as autism has been falsely thought of as a disease rather than a difference. I personally decided to withhold my diagnosis until I gained a broader understanding of autism before discussing it with others. The majority of reactions were accepting and positive. As for the others, there is nothing you can change about yourself, but you can help people try to understand.

Some people would benefit from a diagnosis, no matter how late in life. Events such as Autism Awareness Month are significant in establishing a greater understanding of lived experience while helping people find. their voice and diagnosis. The important factor to remember after diagnosis is that nothing within you changes, as autism is something you have already had for life. A diagnosis can help establish an improved sense of self-acceptance, awareness, and knowledge after a lifetime of feeling out of place. It can provide a feeling of relief. Additionally, a diagnosis provides an opportunity to make environmental and relational adjustments and allows you to seek additional support where necessary.

The biggest thing that has changed since my diagnosis is increased self-understanding. I have identified the reasons behind many things I used to question and feel better for it. I feel more self-aware of my symptoms, and I have a better grasp of what my triggers are and what I can and cannot control.

Emily Wilson is an Australian Freelance Writer and Non-profit Director living in London, UK. She has contributed to multiple publications nationally and internationally. She hopes to release her first book in 2024.

Twitter:@ecewr
Instagram:@emiwilsonr

Image: Mayur Deshpande/Unsplash