Spectrum 10k research – there is a link at the end of this short blog. This blog is entirely my personal opinion.
I have needed time to process this research and what it means to me. My initial thoughts were complex – I felt conflicted and confused.
I totally stand by the researchers wanting to improve outcomes and wellbeing for autistic people.
I totally stand alongside every other parent who sees the struggles their autistic child faces every single day – and would give anything to improve that.
I don’t have an understanding of how DNA and uncovering which genes cause autism will improve autistic people’s lives. I look at other genetic conditions that we understand better; like Down’s Syndrome and compare the options…I am not filled with confidence. I would like to understand more.
I appreciate the fear of eugenics. The reality of whether genetic tests will be used to eliminate Autistic people – or simply the bits of Autism people don’t like – or even the co-occurring conditions only – is something we are unlikely to get a truthful and long-term answer to. The reality of eugenics may be cloudy – but the fear Autistic people are expressing, is tangible and totally real. Yet Autistic people’s concerns are being minimised, invalidated, and spoken over time and time again. Autistic people are being tone policed for their communication-style differences, not listened to, not taken seriously, nor respected.
My need for self-care has meant that I have chosen not to get involved in dissecting the methodology, ethics, and motivation of this research at the moment. But a quick background search on the institutions, funders and past research topics has rung alarm bells for me.
What concerns me most with the launch of this research is the way that it was done:
The lack of awareness of how Autistic people may feel about it.
The lack of compassion and empathy.
The lack of foresight.
The missed opportunities to collaborate meaningfully and take people with them.
This irresponsibility has been divisive and enhanced mistrust.
Some Autistic people are quite rightly distressed by this research, yet this does not seem to have been factored into the research – support was not set up alongside the research, to help manage the inevitable and very real concerns people would have. Yes, the researchers have answered questions – but have they even considered the emotional fall-out – and how that may be experienced by Autistic people (who process information, sensory input, including emotions – differently to non-autistic people). Do we feel cared for, nurtured, and looked out for by these researchers?
My initial thoughts were complex – my current thoughts have moved on but are equally complex. I see research with stated good intentions, that also reminds me that given the choice, some people would prefer it, or think it for the best if Autistic people, like me, did not exist. I am significantly deficient enough that they should be offered the choice about which parts of me are useful enough to be allowed and which bits to get rid of.
My genetics and neurology make me – they make me different to the majority, but I am me, and equally valid. I have a right to be here warts and all. Let’s fix society first.
Autistic people are more likely to experience mental health issues – and most will tell you that this is down to how we are treated and the barriers we face – not our inherent so-called deficiencies.
Many autistic people feel ashamed of our differences – we are more likely to experience abuse, be out of work, struggle with education. We frequently mask our autism – not because we want to fit in – but just so that we are allowed to take part. We may struggle with our identity and feel ashamed.
But it is not for us to be ashamed. Every single human has a right to be here. No one – I repeat – no one person has zero physical, mental, emotional, learning, social or other issues. I have struggled with my own sense of worth throughout my life – and I want to say to other Autistic people.
You are welcome as you are. You don’t need to feel ashamed.
Shame on those who say otherwise.
UK research has predominantly focused on the biology, causes, and treatment of autism. Key findings of a report into UK autism research highlighted that academics perceive themselves to be engaged with the broader autism community, but this perception is not shared by other stakeholders, most notably autistic people and their families. Autistic people see the challenges of autism as societal and attitudinal and not about ‘curing autism’.
CRAE, 2013. A future made together: shaping autism research in the UK, London: University of London.
Non-autistic allies – please take a moment to let the Autistic people you know – and those you don’t too, if you feel inclined – that they are valuable as their whole self. This is a message rarely heard by Autistic people.
Thank you for reading.