Why bad research like Spectrum 10K should no longer get the green light – And what should.

by Nanny Aut

TW: Mentions of Trauma, Bullying and Suicide

I attended the protest against Spectrum 10K in Cambridge last Friday. Who wasn’t there? Who clearly showed no intention to engage with autistics? S B-C or any of the researchers involved. This was a golden opportunity for them to engage in meaningful dialogue and hear our concerns. Instead, S B-C opted to close the whole centre for the day and told the protest organisers, in an email, that he had requested a police presence and a dog patrol – a statement that later turned out to be false. Police confirmed that no such request had been made, it was simply a scare tactic to try and prevent the protest going ahead. A meeting has been arranged with the organisers and S B-C in the coming weeks, but I will contain my optimism until I hear what the outcome of those talks are.

I am not against research into autism, there is a lot we don’t know and there is a LOT of really bad research already out there that we need to address and counter. I am not even against genetic research, there is, without question, times where understanding our genes can be beneficial.

What I am against is bad Autism research:

• Research that doesn’t involve autistics in a meaningful way from start to finish of the process. That consults with autistics in a ‘tokenistic’ way – such as having four ‘token’ autistics in a group of fifteen, with the eleven other ‘autistic’ ‘consultants’ actually being NT parents and ‘professionals’. Yet claiming it is a group of fifteen autistic voices they are using in their initial consultation – yes, this is what Spectrum 10K is doing right now.
• Research that is open and transparent about its intentions and goals. Not using empty terms like ‘for the benefit and well-being of autistics’. Yes, Spectrum 10K, looking at you. How can we make any genuinely informed decision about participating in the research when you fail to provide us any specific information about the intended purposes of the research or even who you are willing to share this data with in the future. Given some of the partners in this research have heavily promoted cure and eugenics in the past and have made no declaration at all of a change of view, this lack of openness is concerning. Especially since you refuse to allow participants in this research the right to opt out of their data being used in further studies. Something that breaches ethical guidelines.
• Research that relies on past bad Autism research citing autistic myths like ‘lack of empathy’ and ‘extreme male brain’. And yes, S B-C was responsible for creating both of those myths and promoting them.
• Research that starts with the false assumption that being autistic is a negative thing – a deficit not a difference. If you are focused on declaring all our natural behaviours as deficits, then you won’t be looking for the reasons as to why these behaviours are natural to us and why we need them. You will only be looking for ways to eradicate them and to destroy the intended neurological design. You won’t be looking for ways to support and encourage them in order to enable us to access our best ways of functioning.

We don’t need 3 million spent on poorly designed bad research that already indicates that it is going to continue to promote the harmful and ableist narratives autistics are trying so hard to fight against. Especially when there is so many underfunded areas of Autism research.

Here are my top five:

1. Apraxia – apraxia is a disconnect between the brain and motor skills. At the mild end, often termed dyspraxia, it can appear as glitches – loss of speech when processing demand is high because there isn’t sufficient processing available to maintain the high processing needed for the fine motor control of speech, clumsiness, lack of a sense of left-right etc. At the severe end, it robs the person of the ability to direct fine motor skills at all and takes enormous amounts of concentration, and effort to even achieve some kind of control over gross motor skills like arm movement and pointing. This means that traditional alternatives to speech, such as AAC and signing are also out of reach. The current myth perpetuated about apraxics is that this means they either can’t or badly struggle to understand verbal communication. This isn’t true. They often aren’t taught to read or even given meaningful learning opportunities on the false assumption it is a waste of time. They are locked in with their thoughts unless alternatives like Spelling to Communicate (S2C) or RPM (Rapid Prompting Method) are taught.
   • Despite this, there is little research into apraxia or the value of S2C/RPM, which leads to professionals choosing to ignore the testimony of apraxics in favour of bad Autism research. We have no idea why apraxia occurs or why it occurs from birth in some and starts around 2-3 years for others. We have very little idea how to address this or if there are potential interventions to restore the connections and reduce the very negative effects of severe apraxia.

2. Trauma – there are some misinformed people out there who claim that there is an over-diagnosis of autistics because the DSM markers for autism are so similar to those for trauma. There is no consideration of the fact that many autistics are traumatised from a very early age from living in an environment that doesn’t fit their neurology, and not being able to establish meaningful social connection with others who communicate the way that they do. There is also no consideration of the fact that the DSM markers mostly don’t accurately define an autistic neurology, they define a traumatised autistic neurology. A reason why a highly stressed autistic adult suddenly becomes ‘visibly autistic’ and is diagnosed later on in life.
   • We need research to explore how trauma and autism are intertwined and how to create a supportive environment that doesn’t put our nervous system under severe stress from early childhood on.

3. Mental Health – there is insufficient research into mental health – period. If you can’t sell a pill for it or monetise the therapy, research isn’t interested. Many autistics struggle with mental health, either caused by their environment or by chemical imbalances. Our brains also often respond differently to medications and therapies than NTs – and not in a good way. Why is this, and how do we create support that will actually work?

4. Suicide – there is research happening around autistic suicide – the numbers are shockingly high, particularly for late teen, early twenties autistics. However, while the conclusions are uniform, and unsurprising – bullying, ostracism, isolation, failure to obtain meaningful work, there is little research as to why these harsh environmental conditions are permitted by society to occur or how to prevent others from treating autistics in this cruel and callous way.
   • There is also no current research into meltdown–related suicide, where that toxic overdose of emotional chemicals is still swirling post-meltdown and the pain and the fear that is still very fresh causes the brain to decide a permanent exit is a sensible option. Despite this being a known phenomenon in Autistic circles, this knowledge doesn’t appear to have filtered into research circles at all.

5. Negative Neurotypical Behaviour to Autistics – Despite this negative and hostile behaviour being highly evident, there is little research into why NTs behave in such a hostile and negative way to those different from them. I only know of one research paper that identifies that this hostile response occurs within seconds of meeting. But this paper does not explore why. Nor is there research into why it affects some NTs and not others or how to create a culture that addresses these toxic behaviours. Could we design early intervention therapies for NTs to stop them developing these toxic behaviours? It very much isn’t just autistics that are affected by this, there are many, many minorities who are shut out and bullied and the world as a whole is much poorer for it.

This is very much not an exhaustive list – but this is a blog not a book, and I am not exactly known for my ability to keep things brief 😉. If you want to see some of the other things that I feel need researching, and have spent the past four years doing so, for my own benefit initially, head over to the Inside Aut section on this site.

What you will see from even these five is the need for top quality qualitative research – where participants with lived experience are interviewed, not their parents or carers who can only offer anecdotal assumption based on observation. Quantitative research comes much later down the track when you have established WHAT you need to measure and quantify from the autistic voice.

You can also see the need for top quality Participatory Research; to help design the research framework and help identify genuine ethical concerns; to help design the questions in a way that meets OUR communication style, not NT or Academe communication style, and doesn’t slant the data collection to an NT/ableist bias before the first response is collected; to help with triangulation on the analysis of the data, helping to identify NT and ableist bias that may, and often does, creep into the conclusions.

What you don’t see is a need to collect gene samples with the vague purpose of ‘it may help autistics – we don’t know how or any actual direction for the research yet – but hey, gene research is trendy and popular and we can get tons of funding for it.’

We need research into autism, we need good quality Participatory Research into autism – we don’t need bad research like Spectrum 10K or the decades of damage to autistics that bad research has been shown to cause.

What are your thoughts on good autism research that we genuinely need and will be genuinely supportive? Have your say in the comments below.

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