This post is me musing on my concerns as science starts to understand more around Autism and genetics and what the implications of this might be.
I am Autistic. I was born in 1974 and diagnosed 20 years later. As a child and teen I was ridiculed, bullied and hated. I felt alienated and on the outside of society until I was about 30. If someone had told me I was Autistic when I was a child my life would have been different. If you had said to me ‘I can cure this’ I would have jumped at the chance to have what I thought was a ‘normal’ life. I imagine my parents – one of whom is now diagnosed as Autistic and the other fits the ‘broad Autism phenotype’ description – I reckon they would have chosen to cure their daughter who struggled to fit in and live a usual sort of life. Flash forward to 2017 and if I were offered this ‘cure’ to make me non-autistic I would say a clear and emphatic ‘no!’ Many of my Autistic friends have also said they would decline being ‘fixed.’ For me, this is because I don’t know what a non-autistic Jeanette would be like. I have never been that person and I like who I am now. I have got through countless struggles and dramas and have become quite wise and sensible, and my Autism has contributed to that rather than detracting form it. My Autism comes with gifts – I can write anything. I barely edit as the sentences and paragraphs just pop out of my brain and onto the page. And one thing which might be a little controversial is that I wouldn’t desperately want to be non-autistic because I don’t like the communication style they use. What I say as an Autistic is the words and the meaning. There is nothing else going on. There are not multiple layers of meaning in my words, or micro-expressions with my face betraying to other non-autistic folks that I didn’t mean what my words said. I don’t like this kind of communication and in fact I often view it – albeit in a rather tongue in cheek way – as perhaps one of the deficits of ‘neurotypical disorder’.
I am not proposing that all elements of Autism and good and worthy. Autism can be extremely hard – as I know myself – but in my mind teaching Autistic children and adults strategies to navigate the world and supporting them to do so is a much better idea than ‘curing’ Autism and wiping us out of existence.
Of course there is currently no ‘cure’ for Autism. This article is based in speculation but it seems to me that science and research may turn up something in coming years which changes the Autistic brain into a more typical one. I do not look forward to this.
The notion of causation around Autism is something which has been occupying the minds of researchers, parents and clinicians for a very long time. If they could just find the Autism genes or epigenetic factors they could provide a ‘cure’. Despite perhaps sounding promising, this has some pretty significant negative connotations attached in my mind. Here are the reasons why:
- Focussing all the attention for Autism research on causation and potential ‘cures’ is not much use to Autistic children and adults in the here and now.
- It can be hard for parents and / or Autistic people to discern the useful research from the charlatanism. As in any ‘industry’ parents of Autistic kids are frequently preyed on by charlatans interested only in making a buck. Some of these ‘therapies’ are in fact dangerous, such as bleach enemas (now thankfully outlawed in many places) or just shamelessly grubbing money from people desperate to make their little person’s life easier to manage (e.g. $35 a litre for camel milk is one I have cone across.) There is a lot of pseudo science and downright unscientific rubbish (anti-vax anyone??). These things actually tend to harm Autistic people and our families and distract parents from helping their children with useful interventions.
- Another issue I have with ‘cures’ for Autism is more philosophical but also very important. Imagine if there was a prenatal genetic test mums could take to find out if their child is Autistic. The mum takes the test and is told how she can ‘cure’ her unborn child’s Autism using genetic therapies. How many parents do you think would elect to keep the Autistic child or not cure their child’s Autism if they could? I would hope it would be a larger number than it probably would be. Then imagine there was a way to fix all the genetic diseases, and all the other apparently ‘undesirable’ traits in our human genome? Doesn’t sound like a very nice world does it? If anyone has seen the film Gattaca they will have seen a glimpse of this – designer children and disease and difference confined to those too poor to afford the ‘fix’. This option sounds far off but I’m not sure quite how far off it is. It is certainly a future many people have speculated about and is basically Eugenics. Instead of showing people to respect difference it would involve eradicating all the difference, Absolutely makes me shudder.
- And on that point, from a purely economic and social view Autism comes with some incredible, useful skills, talents, philosophies and experiences. How many Autistic people (diagnosed and undiagnosed) are working Silicon Valley? How many great writers, inventors, actors, musicians, engineers, botanists, medical doctors, ethicists, etc etc etc in the past and present have been Autistic? A great many of them. To deny the world the gifts of Autistic people would be tragic indeed.
- If a ‘cure’ was administered and no new Autistic babies were born, can you imagine what would happen to the millions of us still with the diagnosis? If observations of other health conditions being ‘solved’ (and i use that term in a very ironic sense), pretty much all the funding and support and services may well be under question as society’s attention is diverted to another health problem which instal viewed as being ‘fixed’ already.
- One of the key issues that face Autistic people in relation to ‘cure’ thinking is that most people view Autistic children as the face of Autism. Autistic children – like typically developing children – are not yet mature. So the people who would make decisions over whether or not to ‘fix’ their child’s autism might not know about Autistic adults and how we change from children. It’s a bit like trying to imagine a five year old working as a lawyer next week!
So if a cure becomes available I hope people are considering these kinds of issues because they are very real. I’ll just pop in the much-used and very accurate Professor Temple Grandin quote saying ‘We are different, not less.’ (And if you don’t know Temple, she is Autistic and is the world’s leading expert in some areas of animal husbandry and was listed as one of Time Magazine’s 100 most influential people.)