Valuing lived experience is more important than ever

I’ve noticed a pattern, a shift in the way the neurodivergent community advocates. The neurodiversity paradigm shift’s foundation is listening to lived experience. People sharing their lived experiences have been a powerful force for change, especially in the autistic community. We’ve seen an influx of late-identified autistic folks through the sharing of our lives with each other. 

I’m seeing a shift toward clinicians, especially allied health professionals, leading the conversations, conferences, and social media communities. The advocates with non-allied health credentials are being excluded from the conversation. 

This is happening, not just in autistic spaces, but also in trauma spaces, where trauma survivors' lived experience is considered less valuable than a therapist's professional experience. 

I’ve been in therapy for 25 years. I walked into my first therapy session when I was 19 years old. I was suicidal, falling apart and in the midst of a full-blown breakdown. I didn’t know I had been through severe childhood trauma or that I was autistic and ADHD. I spent two years starting with the basics, like recognising my father was an alcoholic. I had no idea that every parent didn’t drink to survive their working day. We slowly moved on to the rage outbursts that were also my family's normal, and named it for what it was: emotional abuse. This therapy saved my life. I learned that the deep pain I felt in my chest was something tangible and not in my head.

I loved therapy so much that I wanted to work in some kind of helping role. I was a chef at the time and couldn’t afford to take time off to study, so I settled for self-exploration. I spent many years researching, reading books, and going to therapy. It became my special interest.

Once I could afford to change careers, I enrolled in a diploma in community services. I loved my studies. I was able to learn more about my family life through my studies, especially my subjects in domestic and family violence. I started doing group work with survivors/victims of sexual assault and became an advocate in my church community for child sexual assault. This was during the time the Royal Commission into institutional sexual abuse was released, and changes within the church became mandatory regarding the disclosure and protection from sexual abuse.

I noticed pretty quickly that most churches had a pastoral care team that had no qualifications in counselling, but they still counselled trauma survivors daily. This was alarming to me as I witnessed an incredible amount of retraumatisation within this counselling. The church's values and reputation were at the forefront of the care, not the safety of the women and children who reported abuse.

This ultimately led me to step away from my positions within the church community. Not only were victim/survivors being re-victimised, but so was I. 

I understand the importance of becoming educated on topics before attempting to support folks. I understand that retraumatisation is very common among those without credentials. I’ve seen it, experienced it and been harmed by this. I have also been harmed by those who have spent years studying, those who hold coveted positions like psychologist, social worker or psychiatrist. Retraumitisation happens on both sides of the fence. 

Many neurodivergent people are psychiatric system survivors, especially those with diagnoses like borderline personality disorder, dissociative identity disorder or bipolar. The harm the psychiatric system has caused to these people groups has just compounded their trauma, not healed it. 

Research, modalities or theories do not capture the essence of my experience. I’ve spent 25 years trying to understand my life through these measures, and more often than not, they have invalidated me. I have been through severe childhood trauma: family violence, trafficking, institutional abuse, and emotional and psychological abuse. I know clinicians would call me a difficult client because of my history. I’ve heard it in training sessions when trauma therapists talk about plural folk or those who have been through sexual abuse; it’s not hard to see their attitudes. 

Maybe if we leaned into listening to people's lived experiences as research, as valuable information that can influence therapy practices, we might start to see trauma survivors as human beings who have been hurt and not human beings who need to change their behaviour. 

When we listen and validate lived experience, we move away from individualistic ideas of healing. We can see it’s not the sole responsibility of a trauma survivor to heal themselves. It’s a collective effort. We can then challenge systemic harm, racism, and the patriarchy. Community healing becomes available. Belonging becomes the norm. And the abuse stops. 

Lived experience is shaping history - Grace Tame. 

Let’s not forget it or remove it from the conversation. Qualifications are great if they’re accessible to you and if you critically assess the information you’re given from a system that thrives on inequality.