Thread by @autiescientist

What went wrong for #Spectrum10k and what are their options now? What can the autistic community achieve? A thread 🧵 #StopSpectrum10K #autism #ActuallyAutistic

1. The key issue for Spectrum10k is a lack of trust. Key here to remember what trust actually is: it is a combination of perceiving a third party as a) competent, b) benevolent and c) transparent. Spectrum10k has issues on all aspects:

a) Competence: is questionable from many points but probably 2 are key. For one, SBC has introduced theories of autism that have set back the field (especially female diagnoses) by decades and has added to stigma (empathy!)

a) Competence: secondly, there seems to be little understanding of what the autistic community actually NEEDS, what our lives are like, what our experiences are. Without such understanding they will always be judged as incompetent- how could they help even if they wanted to?

b) Benevolence: the stated aims of this research are to improve wellbeing. I actually have little doubt that what researchers *think* they do is help and reducing suffering, but on the basis of flawed mental models. Helping parents who want their child to be “normal”.

b) Benevolence: Helping by taking the “autistic” bits out of the person. Probably also helping by reducing the chance of co-occurring conditions. But trying to fix these things within the person.

b) Benevolence: and this approach this is of course infuriating for us because we realise that helping would mean to address societal structures and our environment. It wouldn’t take a lot to improve our lives if that would genuinely be the aim.

b) Benevolence: but the core issue is that benevolence goes only as far as making the researchers feel good about themselves and being able to justify their actions. This is not autism centric. This is a NT centric form of helping. And we see through it.

b) Benevolence: Another big error here was choosing ambassadors that aren’t part of the community but those that are confrontational and insulting - and then not distancing themselves from it all. This is not the behaviour of someone who cares about our wellbeing.

c) Transparency: the media strategy has been a disaster. Explicitly mentioning wellbeing but it being clear that there is no theory of change from DNA to improving wellbeing and it therefore appearing as a marketing ploy.

c) Transparency: grant proposals that talk about different aims (eg understanding causes) than those on public facing material. Lack of precision in consent forms about data & information & consent. Lack of transparency about the risks to children who can’t consent.

2. This complete erosion of trust means that the reaction of the autistic community with strong fear of eugenics is entirely justified and understandable. Given the competence in the community to research and pick holes in logic, all of it was surfaced at lightning speed.

3. What are their options now? It’s key to remember their aims here: they want participants for their study. Therefore they are interested in a supportive adult community - without which their sample is skewed toward young children and their parents. But even they are sceptic.

4. Their options? They could cut their losses and recruit only those younger participants. Given that they combine data sets with the US, it might be possible for them to do that. Or take a lot longer than they thought by building 121 rapport with existing research participants.

5. They could attempt trust repair: scrap their am ambassadors, distance themselves, explain what data can be deleted and how, seeking consent to sell data to third parties, frequent updates to all participants on findings and new consent for instance.

5. For the autistic community key aims should be to continue to make potential participants (parents etc.!) aware of the risks and explain why we aren’t trusting here. It could lead to negative media attention for them, it could lead to some parents and adults not taking part.

6. Those of us with the energy should also be open to engage with these researchers if they genuinely wanted to address their issues in the future. The roundtable could be a start.