Parents have lived experience

Spending time again with the Pasda group in Livingston over the last 3 weeks reminds me that their challenges of doing the best for their autistic child goes on into adulthood.

We all recognise the importance of hearing the ‘lived experience’ of autistic individuals.

Their voices offer crucial insight into what it means to live as an autistic person.

However, in this important push for recognition, we should not silence another group who also live autism every day; parents and families of autistic children.

Parents might not be autistic themselves (although of course, many are), and they’re not trying to speak instead of their children.

But that doesn’t make their experiences invalid, irrelevant, or unworthy of being heard.

Parents live the realities of supporting, advocating for, and navigating a world that is often hostile or indifferent to their child’s needs.

That is a different form of lived experience.

Unfortunately, parents often find themselves caught between two loud and sometimes opposing voices: the "professional" voice and the "autistic" voice.

Both can claim to know better, and parents can be left trying to do what’s right while feeling dismissed, judged, or irrelevant.

Most of the parents I’ve met are just trying to do their best.

They’re learning, adjusting, advocating — and they carry the emotional weight of trying to support their child in a world that often doesn’t understand.

They shouldn’t be made to feel guilty for not being autistic themselves, or for not always getting it right.

We need space for all types of lived experiences. We need autistic voices. We need professional insight.

We also need the voices of parents and families, because they, too, have stories that matter, and so often they are the only support for the autistic person.

The challenges are big. To succeed, we need to work together for a society that is understanding and celebrates of autistic talents and autistic thinking.

What do you think? Let me know here.