Out of date stereotypes about what autism looks like.
Stigma and deficit-based terminology in diagnostic manuals.
A lack of knowledge and confidence in diagnosticians.
Autism traditionally not being recognized in women, trans and non-binary folks.
Camouflaging/masking to fit in and be accepted by others.
Dismissal/invalidation of discomfort in childhood, leading living with constant discomfort and believing everyone else does too.
Lack of accessibility for patients to diagnosis (location, cost, and wait times).
Isolation and lack of digital literacy.
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| Autism - Barriers to Late Diagnosis for Adults |
The inaccessibility of official diagnosis is one of the main reasons that self-diagnosis is acceptable within the Autistic community. But without an official diagnosis, many of us may continue to feel a bit of imposter syndrome. In Calgary in 2022-23, there were no known specialists who would do an adult autism assessment/diagnosis for me. The Glenrose Clinic in Edmonton would do adult autism assessments, but there was a six-year wait!
Since I would likely be retired before then, and I needed immediate support, I chose to pay for a private online assessment to expedite a diagnosis. Many others are still waiting for an opportunity to be assessed and not everyone is as privileged as I recognize I am to have a supportive Hubby who encouraged me to spend the money on the assessment. I was also fortunate to have been reimbursed through health insurance through work.
Knowing you are different, but not knowing how or why can leave you feeling broken, confused, and exhausted from a lifetime of trying and never being good enough. The cost of hiding your true self in order to be accepted contributes to the high rates of depression and other co-occurring health conditions among Autistics, including a high rate of suicide.
Autism is a spectrum with a wide range of abilities, but we are not “all a little bit Autistic.” There’s a threshold at which it becomes something that not everyone experiences; your life is different, and disabling, and you need accommodations. All cultures, ethnicities, ages, and genders are represented in the Autistic community. Some people require more support than others. Some are well-spoken, educated, articulate, in relationships, and have children, jobs, and degrees. Some use assistive technology to type words that are then converted to speech. Some require support for their daily activities of living and don’t live independently.
A common problem for Autistic people is that our tone of voice and facial expressions don’t always convey our level of distress. We are often dismissed and given an oversimplified solution, when we actually need to make changes to our environment when we are overwhelmed. Many of us learned that these accommodations are unacceptable, because they make other people uncomfortable with our differences. So we smile and mask our distress until eventually we can’t do it anymore, and we break down, melt down, shut down, or burn out.
Being in Autistic burnout revealed my autism very late in life. In early 2022, an Autistic friend I was visiting told me she was sure that I was “on the spectrum.” I actually needed convincing. She pointed out examples of my behaviour constantly over a week, until I was convinced enough to take an online test. The online tests are not designed for adult women, (I was just sub-threshold). But I began to learn what autism in women looks like, and watched videos of other Autistic women talking about their experiences. I cried watching Sarah Hendrickx, because I finally really saw myself.
My diagnosis included a screening, an assessment, and a video interview, followed by a formal written diagnosis signed by a medical doctor. I completed many diagnostic tests, and dozens of pages of answers to questions about my childhood experiences. I provided descriptions of my behaviour from teachers and family gleaned from report cards and my baby book. It cost around $2000 (reimbursed by my health insurance) and took me around 12 months to complete. Dr. Natalie Engelbrecht of Embrace Autism was a keynote speaker for the United Nations on World Autism Day this year in 2023. She diagnosed me.
Learning later in life that I’m Autistic was a gift of self-understanding and compassion. I was also officially diagnosed with ADHD, so that makes me AuDHD. The personal cost of struggling undiagnosed for over 50 years has been hugely draining, and I feel like I’ve missed a good part of my life wasting it on things that were unimportant to me but important to others. I'm finally able to let go of unreasonable expectations and surround myself with people who love me exactly as I am; who see me, who understand me, who accept me, and who embrace me. My husband is one of those people. We have known since 2014 that he is Autistic. I volunteer with a group of Autistic women around my age who are like family to me.
Researchers and service providers are beginning to embrace our differences, along a spectrum of normal human ways of thinking and being, rather than pathologizing them. It’s a relief to me to know that it’s normal for me to struggle in some areas. I now recognize and embrace what I’m good at (reading, understanding, speaking, writing). I spend less time forcing myself to do the things I’m not as naturally good at (numbers, dates, times, directions). I spend less time trying to convince people I’m worthy of their time, attention, respect, friendship, or love. I found ‘my people,’ and communication amongst ourselves is blissfully easy and rewarding, with surprisingly little effort. I’m making better choices for my mental and physical health, and I’m finally able to get on with the business of living my life as someone different, not deficient or disordered.
~Michelle
PS: an older version of this updated article was originally written and published in Autism Around Alberta newsletter by Autism Society Alberta here: https://mailchi.mp/autismalberta/jan2024aaa#mctoc8
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