Speaker and author Pete Wharmby was diagnosed as autistic at the age of 34. Pete spoke to Miriam O'Callaghan about his new book, Untypical: How the world isn’t built for autistic people and what we should all do about it, and she asked him difficult the first 34 years of his life were.
"For that whole 34 years I had no idea. I had no clue that, em – I didn’t really know that much about autism, to be honest, certainly not when I was much younger. But being different in that way and, you know, if you’re autistic, then the differences can be quite considerable, things like differences in communication style, differences in how we interpret sensory kind of information and things like that, can make life quite difficult. But the trouble is if you don’t have the diagnosis, then you have no idea why you’re feeling that way, you know? So, I basically spent my entire first part of my life just assuming that I was a bit kind of, I don’t know really, like fragile or a bit flaky, you know, like not really capable of managing the world."
This led Pete to conclude that he just couldn’t cope with stuff as well as everyone else, but he didn’t know why. So, Miriam wanted to know, how did his diagnosis eventually come about? It all came to a head, Pete told her, when he became a parent because, even though he didn’t know at the time that he was autistic, he was exhibiting behaviour that is often associated with autism:
"I’d kind of built up a load of very strict kind of routines and systems to help me get through each day and the arrival of a baby on the scene kind of tore that all apart, as it does, you know? So I found myself really unable to cope in a very, very deep kind of way. So I was just casting around for answers, really – you know, why was it so difficult? – and I found out about autism, I researched it quite heavily and then I contacted, you know, I just contacted the doctors and they got me the referral and so on and so forth."
Although shocking, the diagnosis, when it finally came, was a relief for Pete because he finally had a reason that explained why he spent his life struggling to navigate the world. But it didn’t make life easier overnight:
"It didn’t necessarily offer any easy answers, but it gave me, you know, like a reason. It gave me a way to start looking for answers in a more targeted way, in a more kind of impactful way."
In his book, Pete refers to autism as a "whirlwind of anxiety". Miriam wanted to know if that anxiety was unrelenting. Pretty much, is the answer:
"Certainly for me, it kind of is, yes. But there are moments where it kind of calms down. But there are so many sources of it, you know, most of the anxiety, I think, that most autistic people at least experience stems from a combination of those communication differences that we have, which can lead to incredible amounts of miscommunication, you know, misunderstandings, getting the wrong end of the stick, not getting jokes, or telling jokes that other people don’t get."
Everybody knows how awkward a moment of miscommunication can be, but for non-neurodiverse people, these moments tend to be reasonably rare. For a lot of autistic people, Pete says, these moments tend to be constant. And as well as that, Pete has sensory issues, something that, again, can be common in people with autism:
"For many autistic people, our senses are really dialled right up, you know, we’re dramatically sensitive to things like light and sound, heat and cold, taste, smells, those kinds of things. So again, that’s constantly bombarding you, so, you know, by the time you get to adulthood, you’re exhausted by all of this."
Defining autism is difficult, given how wide the spectrum is, but Pete told Miriam that every autistic person has their own profile and will have their own personal traits that place them somewhere on that spectrum:
"For example, I am very sensitive to sound, whereas I can eat almost anything, whereas another autistic person might have no problem with sound at all, but could have tremendous limitations in what kind of tastes and textures they can handle in their food. And that’s before you even get on to things like co-occurring conditions like ADHD, or dyspraxia, dyslexia and so on and so forth."
Communication and sensory differences are huge parts of autism, Pete says, and there’s another crucial aspect of autism – monotropism:
"Monotropism is a kind of posh – it's a good word really – that means kind of, single focus. Like, real, like single point of focus. Like, almost like tunnel vision, but not quite as negative an idea. It’s the reason why autistic people can so frequently hone in and focus in on a task or activity, or an interest, or whatever it might be, seemingly inexhaustibly."
You can hear Miriam’s full, absolutely fascinating conversation with Pete, by going here.
Untypical: How the world isn’t built for autistic people and what we should all do about it by Pete Wharmby is published by Mudlark.