Autism Stories: Bruce Petherick and Paula Holmes-Rodman

The two of you recently did some work on supporting neurodivergent cancer patients and have created an important document around this.

One of the important items I think for people to know about is that neurodivergent cancer patients are at risk of, higher risk of late cancer diagnosis and having poor outcomes maybe as a result.

So what do we know about much later cancer diagnosis and why it tends to occur within the, um, neurodivergent community?

Well, it sort of starts...

So I work in cancer care as well, and, um, it starts with the diagnosis and screening.

So the screening process for the cancers for which there are screenings are inaccessible.

They are, there's all sorts of sensory barriers.

There's communication barriers.

So even if things like mammograms, things like prostate exams, things like all of the things which are sup- we're supposed to be doing, they're difficult for neurodivergent folks to actually access for all the reasons we can imagine.

So if people get diagnosed later, then they're more likely to have poor outcomes.

Uh, my sister Lindsay, she had ovarian cancer.

She was diagnosed at stage four, and most ovarian cancers are diagnosed later.

But for her to be able to articulate her symptoms, to have her symptoms believed, and not to have diagnostic overshadowing in which her symptoms were just, just described as autistic expressions of, you know, herself rather than actually cancer symptoms, um, it got, had to get really, really bad.

She had to end up in emergency multiple times.

So and then by then, of course, the cancer progressed.

She fewer treatment options.

And so at every time, there's barriers and harms in the sensory information, and the longer you wait, the worse.

But there's not a lot of research in NF on autism.

So we do know as a leader in the later diagnoses work.

It, it also...

I mean, I have to, I have to s- also, um, reinforce this is a reflection of systemic problems autistic people have.

W- there is medical trauma.

There is that, um, a- as, as, um, Paula mentioned, social aspects, sensory aspects that make it difficult for autistic people to be involved in the medical system.

But of course, all our, all our autistic issues with, with bad outcomes tend to be based in systemic problems, mm, because we find it, we struggle with interaction with systematic systems in its, in and of itself.

I hope that made sense.