When Chanelle Moriah was diagnosed with autism at age 21, life finally began to make sense. By then, there had been several misdiagnosis and six years in the mental health system.
After the diagnosis, Moriah went in search of information but couldn't find much written from the perspective of someone with autism.
So they illustrated and wrote I am Autistic: An interactive and informative guide to autism (by someone diagnosed with it), a book now published by Allen & Unwin.
Photo: supplied
“I was looking for something that kind of summarized everything and unless you’re looking at the diagnostic criteria the options were very limited,” Moriah tells Nine to Noon.
Moriah's journey to diagnosis had been a difficult one, with painful questioning and multiple suicide attempts. But when it did arrive, it offered the opportunity to manage the condition.
“Prior to being diagnosed I had been struggling with my mental health for a very long time," they say. "By the time I started questioning whether I was autistic I had been attempting suicide almost monthly. I was in hospital regularly and so I did question whether I was autistic and I talked to my doctor about it and got referred.
“There’s a whole mess of a situation around my diagnostic journey, but I did get a diagnosis and got the diagnosis confirmed. Almost instantly things improved significantly in regards to my mental health, with putting the correct tools in place and finding people who understood me and were similar to me was such a relief.”
Not being aware of autism had meant Moriah continued to make comparisons with others and how they were living.
“There were so many things that I didn’t realise were not universal experiences," Moriah says.
"For example, when I am out and about with people I am constantly aware of every single act my body’s doing, how my tone is doing, how my sentences are structured. Every single thing is monitored and consciously chosen, and I didn’t know not everyone was doing that all the time and it’s quite exhausting. Even things like realising I was becoming incredibly overwhelmed with sensory input and that I needed time by myself.
“I didn’t know that not everyone struggled with everyday functioning, or getting started with tasks or following through. It made a huge difference finding out that ‘oh I’m not just failing and toddling behind, other people don’t have to deal with these things.”
Reading diagnostic manuals allows you to understand the condition, but Moriah wanted to reframe that dry clinical perspective into something more personal and meaningful.
“The diagnostic criteria is written very negatively… It’s very deficit-based and it’s not written from what it’s like to live with those things and so I wanted to put everything together, especially after I got diagnosed and started piecing a whole lot of different things together, not necessarily in the diagnostic criteria, but common experiences of autistic people.
“I wanted to put everything together more neutral.”
Moriah was initially writing the book for personal use and as a means of processing the information now available and making sense of past feelings and experiences.
“There were so many things falling into place and it was just a lot to process. It was putting it all together for my brain to make sense of everything," Moriah says.
They shared pages of the book on a couple of groups on Facebook and received about 300 messages asking when the book was being published.
“At that point I thought 'oh I’ll just self-publish, it’s not going to be a big deal', and actually it was someone else who I now work with, she sent screenshots of it to Verb Wellington and they sent it off to some publishers and within about two hours of that I got a phone call from Allen & Unwin asking if they could publish my book."
There have been 7500 copies of the book sold so far.
“By the time I got the call from Allen and Unwin I’d already finished the book the day before. I’d already illustrated everything, it was all done.”
One of the common experiences after people are diagnosed is the suggestion by some that they are faking it. Moriah addresses that idea in a section of the book.
“When people get diagnosed late it’s almost like they start appearing more autistic and at that point they sometimes start questioning themselves or other people start making comments about it, like ‘you’re faking, you’re acting’ and it’s just not the case.
“It’s like you’ve gone your whole life trying to be everyone else and you’re trying to follow in people’s footsteps and keep up with other people, but you don’t actually get the chance to just be yourself. So, when you do get a diagnosis it’s a relief and you just get to be yourself.”
The book lists the common traits of autism and then goes through 'harder' topics, including issues of gender and a ‘cure’ for autism.
Moriah says she was nervous about offending anyone in the community with her book, but that she’d made it clear her experiences were particular to her and that she wasn’t speaking for anyone else.
“I wanted it to help someone who were not yet diagnosed, as well as those who are and explaining it to neurotypical people.
“And I wanted to express the fact that everyone experiences things differently… It’s not a one size fits all, it’s different for every single specific person.”
“I tried really hard to include a wide range of people’s experiences and making sure that I was being inclusive of as much of the community as I possibly could, while also not overstepping my boundaries. I think I’ve done OK with that.”
Moriah says the response to the book has been amazing, with people happy the topic is being discussed.
“That was exactly what I was going for. I want people to feel less alone, because it’s stuff that’s not discussed, it’s stuff you kind of deal with in silence and you think that you’re alone in that.”
The key message to neurotypical people in the book is really that autism is part of an individual's unique make-up.
“I want it to be understood that autism is not a bad thing. It’s not this awful disease. It’s not something that we need to cure, and I wanted to outline the fact that it’s a privilege to receive a diagnosis...
“I think people don’t understand that it is a different neurotype. It’s changes the entire way that our brains and nervous systems develop and are wired and so it’s not something that you can just get rid of. Because if you were to ‘cure’ the autism, so to speak, you would change the entire person. So, to say that you don’t like that about someone, that it’s bad, you’re saying that that person is bad. A lot of people don’t get that.”
