I first heard the phrase lived experience less than a year ago, when I was invited to join a team advising pediatricians on how to diagnose, treat and support children with autism. The team, which I’ll call the A-Team, included a psychiatrist, two psychologists, a social worker, and a developmental pediatrician.
The A-Team was looking for a “Lived Experience Expert”: someone who wasn’t an autism clinician but had firsthand knowledge of the issue. As a mother of two adult children on opposite ends of the autism spectrum, I fit the bill.
At first, it was intimidating. Everyone else on the A-Team had professional training. I had none. Everything I knew about autism came from raising my children and researching it for years as a journalist. I had written a blog about autism parenting for more than a decade and eventually turned those posts into a book. I was an outspoken advocate. But I had no degree to back up anything I said. I wondered whether my contributions would be taken seriously.
Despite that hesitation, I said yes, because I know with absolute conviction that my perspective mattered.
My experience is not grounded in theory. It’s grounded in reality. I’ve been through not one but two autism diagnoses. I coped the only way I knew how: by digging for information and trying to understand the system the way I would try to understand a news story.
Unless you’ve lived it, you can’t grasp the devastation of being told that your child has a disorder with no known cause or cure. Or that there isn’t much anyone can do. Or that you should get on a long waiting list for a specialist, and then on another waiting list for therapy that may or may not help.
Unless you’re an autism parent, you can’t know what it feels like having a dentist tell you the only way to treat your child is to wrap them up like a mummy and then hold them down like a prisoner while forcing their way into her mouth. Or to bring your daughter, covered in an itchy rash, to a dermatologist, only to have a nurse point at her in disgust and say, “What is that?” while she melts down on the floor.
They are all true stories. My stories. My lived experience. No doubt other autism families have similar stories. We were traveling without a map. Our kids were pointed at, ostracized, dismissed.
Worst of all, they were untreated.
Thankfully, things have changed since then. We now understand that the earlier you get a child with autism help, the better. There is still no cure, but there is far more support than there was when my children were diagnosed in the early 2000s.
The A-Team is part of that progress. Twenty or thirty years ago, many pediatricians were hesitant to diagnose autism. The A-Team is working to change that by building confidence and knowledge in screening and supporting children with autism and their families.
At Autism New Jersey, too, where I am Director of Communications, we are working to improve healthcare access, quality, and satisfaction for patients with autism through our Advancing Healthcare Initiative. As part of those efforts, we have an online Pediatrician Resource Hub that supports primary care providers in diagnosing and supporting care for patients with autism.
The work being done with pediatricians became even more meaningful to me during one of the A-Team’s recent advisory meetings. The group was discussing a boy with autism being raised by a single mom with little support. While other team members focused on the child’s needs, I found myself thinking about the mother in particular. I remembered my own years as a single mom, trying to juggle a full-time job, school meetings, doctor’s appointments, tantrums, and the overwhelming exhaustion that came with it all. I felt for that mom who wanted to help her child but just needed more hours in the day, or just someone who could step in long enough for her to sit and breathe.
That is what lived experience brings to the table. Clinicians bring essential expertise. But lived experience brings something more: context. Without that context, even the best professionals can miss what families really need.
Lived experience fills the gaps. It explains why a parent might not follow through on a recommendation. Not because they don’t care, but because they’re unsupported or overwhelmed. It reminds teams that behind every diagnosis is a family.
People with lived experience should be everywhere this work happens. Not as an afterthought, but as an essential part of the team.
Leave a Reply