This year I turn 42. For those of us who enjoy Douglas Adams’ Hitchhiker’s Guide to the Galaxy books, 42 is the ultimate answer to the question of what is the meaning of life the universe and everything. So in my 42nd year, I am reflecting on meaning and fulfilment and how Autistic people can have the meaning misunderstood or misinterpreted. I am currently sitting in my lounge room with my beautiful black cat asleep on the rug saying purr. I am listening to myself. No really, I am. I recorded a radio show with an amazing writer and fellow Autist and I’m making sure I don’t need to tweak the audio. My life is filled with these sorts of things at the moment. I am ‘living my dream’ as they say and meaning and fulfilment are writ large on my life. It’s a good place to be.
My life has not always been meaningful, or even likely to continue beyond the coming Tuesday though. Here is my life….(the short version). Somehow, in nearly 42 years I have gone from being a smart and unhappy kid, a bullied and abused and very unhappy teenager, a socialist, a criminal and prisoner and drug addict, someone with a diagnosis of Autism who didn’t accept it, a woman with a diagnosis of schizophrenia who didn’t accept it, a long-term welfare recipient, an aspirational human, a university student, a public housing tenant and unintentional alcoholic, a Masters student, an author, a somewhat reluctant public speaker on Autism matters, a graduate public servant, then a level higher in the public service, a homeowner, another level higher in the public service, a very psychotic person, a reluctant hospital patient, an author again, a TEDx speaker, all of a sudden a well-known and sought after Autistic speaker, mum to a little black kitty and just about to be an author again. I don’t know what’s next but I ended up in a place which gives me a lot of meaning. I feel my life is worthwhile and I’m helping other people through what I do. It’s a pretty good feeling.
There are over 7 billion other lives in this world, with a similar amount of twists and turns and odd things and triumphs and tragedies as mine. Different people find different meanings for their lives. One thing I struggle with around the concept of meaning is some of the messaging around Autism and how Autistic individuals are seen in relation to fulfilment and meaning.
Here are some of the things I notice some people expressing which worry me:
- If someone says ‘I am Autistic’ most people do not instantly think of this person being fulfilled and having meaning in their life. While sometimes we do lack a sense of meaning (just like some non-Autistic people do), this assumption often seems to be wrong and based in stereotypes. Also, some Autistic people’s sense of meaning and fulfilment comes from things that non-Autistic people don’t relate to or see as meaningful. To the Autistic person, there may be deep meaning in their interest or activity, regardless of what others think.
- One issue that can happen is when a parent or educator denies their Autistic child access to things which are meaningful to them for whatever reason. I know how I would feel if a bigger person I looked up to said to me ‘No more Autism advocacy for your Jeanette! It’s making you stay up too late’ I would feel terrible and kinda betrayed. A good book that looks at this sort of thing is ‘Just Give Him the Whale’ by Patrick Schwartz and Paula Kluth – Just Give Him the Whale
- If an Autistic person does one of the things that other people do as part of their life, such as employment of going to university or even graduating from high school, they are often seen as being ‘amazing’ or (pass the vomit bag please) ‘inspirational.’ While for some people – Autistic and otherwise – these are significant and unexpected achievements, for others of us, going through a world where just doing stuff that we want to do and being seen as some kind of hero is rather insulting. I do gain meaning from my paid work but it does not provide a super-charged, exponentially amazing experience because I am Autistic. It is my job, like other people have a job. I really enjoy it but I do it so I can pay my mortgage and all those reasons that most people do their jobs.
- One thing that provides meaning to a lot of people in the world is parenting and family. Autistic people are parents too – in fact a lot of parents of Autistic kids these days are seeking and gaining a diagnosis after one or more of their kids is diagnosed. But so many non-Autistic people think that we can’t ‘do’ parenting. The expectation can be that we won’t have kids and Autistics who do get a while load of unhelpful ‘help’ and unwanted advice. The whole thing about having no empathy – and flowing onto that Autistic people’s apparent inability to connect wiht their kids or partner – is insulting, unhelpful and just plain wrong. We do find meaning in relationships with partner, family, kids and friends just like others do. We are not cold-hearted robots or refrigerator parents or any other silly stereotype.
I now have a lot of meaning in my life. I am very fortunate. But as my little potted Jeanette’s life timeline above illustrates, I have not always had meaning, or even a stable place to live and an income. Meaning is vital for everyone but it can also be a luxury which one needs to get to a point where they can find it. Through history humans have sought meaning and purpose. But I think that we need to rethink meaning and Autism. We can and do have a meaningful life, whatever it might look like. Even if we don’t do things that people traditionally ascribe meaning to, then that does not diminish that meaning to us. And we have as much right to a meaningful life as anyone else does.