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May 13, 2024

Late diagnosis of autism spectrum disorder (ASD) and complex Post-Traumatic Stress Disorder (c-PTSD) - a lived experience story

My life story is one of an autistic (and Attention Deficit Hyperactivity Disorder [ADHD]) female. I want to share my story with you in case you are struggling because of undiagnosed autism or lack of support around you

Content warning: Trauma, distressing references to mental health issues, workplace bullying, undiagnosed autism, lack of support, poverty
This content has a custom transcript:

My life story is one of an autistic (and ADHD) female. I want to share my story with you in case you are struggling because of undiagnosed autism or lack of support around you. Every autistic woman needs validation for what they are experiencing. However, down-putting is often the case, unfortunately.

I endured pain and trauma through my whole life and found social contact confusing and exhausting. It is difficult trying to work out when misunderstanding is my problem or it’s with the other person. The key to understanding why my life has been so hard is my neurodiversity. As the psychologist who diagnosed me said, my brain thinks very differently to other peoples’ brains. The brain is built differently. Autistic people even experience pain differently.

But I didn’t know these things until late 2019, at 63 years of age.

I always tried hard to express myself very clearly, but other people were largely a mystery to me. Why do others seem to be so deceptive, evasive and not say what they mean? I always say what I mean. However, my straight talking has often got me into trouble. I have always known I was essentially naïve, socially, but with no idea how to fix it. Nothing I was doing worked.

Autistic people tend to burn out from our constant efforts to get along in this world. We burn out before we realise what is happening and it’s too late to pull back. This has happened to me many times, until the big burn out and increased complex PTSD surfaced in my early 60s. All this, I now know, is due to my autism. Since my big burnout I need more recovery time after social interactions, meetings, or stressors.

I lost my career when I became a single mum. However, like most autistic people, I found a special interest in which I excelled. I ran a community group on a volunteer basis for over 30 years. This gave me both personal fulfillment and social interaction. However, when I found myself in need of help, the people I thought were my friends let me down. I appealed to their empathy by explaining my recent autism diagnosis and the health crises in my life, but sadly it backfired. I was forced to give up my life’s work because I was bullied, and no one called it out. I remain in deep grief over the lack of gratitude and recognition for my work that was of such benefit to so many.

Stress is a huge health problem and can lead to chronic ill health, immune compromise and mental health breakdown. Sustained stress hormone overload led to my diagnosis of complex PTSD and autism with ADHD. Losing my special interest and connection to purposeful work was so stressful for me it also led to a cancer diagnosis. Psychologically and physiologically, it is a slow road to back to health.

Women with disability experience greater disadvantage and stress. Intersectionality explains this. My own factors include gender, neurodiversity, mental illness, physical disability, persistent pain, poverty, single status and lack of family and intimate partner support. Intersectionality increases misunderstanding and discrimination against women with disability and causes greater disadvantage. Intersectionality can cause misdiagnosis of neurodiversity. Perhaps the most damaging result of misdiagnosis is incorrect identification of neurodiversity as psychosis - but there are many other potential negative outcomes.

On the topic acceptance and validation, I have found that one of the most destructive things I still experience these days is invalidation of my disability, particularly my neurodiversity. It has taken me three years to accept this identity, start to overcome the huge challenge my diagnosis presents and to step forward with some dignity within this identity. I can find myself “triggered” and at a loss to know what to respond with when others invalidate this identity. I know that a lot of people are in wilful ignorance. Wilful ignorance is the decision a person makes to not get the information that will help them to understand something.

If I had known, I was autistic a long time ago I would have been alert to wilful ignorance and better able to stand up for myself.
It is still hurtful when others are dismissive and don’t listen. I am still working on what to respond with when someone says, “we’re all a little bit autistic, don’t you think?”

The medical model of disability - as if a woman’s disability has to be “fixed” - isolates women with disability from participation in community. Inclusion is no longer enough. Women With Disability must have participation in community.

Better understanding of disabilities, greater tolerance of difference and genuine participation will enrich our society. I heard an Aboriginal woman speak up recently during a seminar, saying that there is no word for disability in any Australian Indigenous language.

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