Thread by @ekverstania

[THREAD] Autism research could prioritise researching abuse.

Examples of abuse.

Categories of abuse.

Prevalence of abuse.

Motivations for abuse.

How do autistic people respond abuse?

What are the obstacles to reporting abuse?

What are the alternatives to reporting abuse?

What happens when people report abuse?

Which institutions promote abuse?

What systemic changes could provide better justice to survivors of abuse?

What do the abusers say: what would make them stop abusing disabled people?

What are some of the options for preventing the various categories of abuse?

Which people or institutions are sustained by ableism?

What treaties, policies etc. already exist to help prevent ableist abuse?

What practical steps can be taken to drive change?

Or should we maybe just research the causes of autism?

If we do both (researching causes of autism and researching how to stop abuse), which one should get more funding?

Whose choice should it be?

Whose autism is it anyway?

What else?

Which researchers benefit from the perpetuation of abuse?

Who should define what constitutes abuse?

How do abuse and neglect amplify so-called 'autism symptoms'?

What could the various autisms possibly look like without the influence of trauma?

Which ideas about autism contribute to the abuse of autistic people?

Which ideas about autism correlate with lower levels of abuse?

In classifying abuse by category, what classifiers should we bear in mind?

Classification of abuse by relationship type, e.g. caregivers, siblings, institutional staff, actual institutions and systems (via policy), mate abuse, partner abuse, abuse by other autistic people in the same virtual or physical space?

Classification of abuse by means of abuse, e.g. sensory abuse, physical restraint, seclusion, gaslighting, planned ignoring (formal and informal), removing or denying communication supports, chemical restraint, ableist criticism, shouting...?

Differences in abuse types and abuse prevalence between various cultures and classes.

Intersectional abuse clusters (e.g. autistic and mentally ill, Black, trans, etc.).

How do abused autistic people behave?

Would people accused of abuse support research about abuse if they're not running the research?

Should we stop calling out abuse in the hope that abusers in power positions will support research on abuse?

Who funds autism research? Do we have any hope of getting anti-abuse research funded by the usual funders?

What do we need to understand about the machinations of power if we are to have any hope of changing the lives of any marginalised group of people?

https://twitter.com/HZiauddeen/status/1319015839870427138?t=KLAOlRs6jgPLfkmAZUDRPw&s=19

What alternative avenues are there to getting funding that don't involve approaching organisations that traditionally fund abusers?

What motivates abuse funders?

Could we approach certain abuse funders and persuade them to fund anti-abuse research instead?

Great questions can lead to great change. Can you think of examples where this has happened?

What questions should we add to this list?

Which ones should we take away?

To whom should we be asking the questions?

For any disability, which is most important: preventing ableism, or preventing the conditions to which ableist societies respond in ableist ways?

Who should decide?

https://twitter.com/PhilosopherCrip/status/1462130642481647619?t=2f2P4dOtYZktuJjyfSORmw&s=19

Is the answer different for certain disabilities?

Is abuse a priority area for autism research, or is it way down on the list?

What should autistic people do if autism researchers focus on things which aren't priorities for actual autistic people?

Will autism research ever change if autistic people don't insist on our priorities moving to the top of the agenda?

What does 'insisting' mean? How does one 'insist'?

Is autism research which refuses to prioritise the things autistic people say they need part of the culture of abuse?

If not, what is it?

Should we do this?

https://twitter.com/ekverstania/status/1274024188974596097

If not, why not?

What else, or what other things can we do?

@Autistica does suicide research; but they also drive autistic people to suicidality, and then gaslight them.

So, what if we got existing autism research organisations to prioritise abuse as a research topic without changing who's in charge and who's doing the research? Wouldn't we just get more gaslighting?

Is current mainstream autism research capable of reform towards an anti-abuse culture in line with human rights?

Does the history of the autism research industry and the attitudes of the typical INSAR researcher give us any hope that they'll jump at the opportunity to stand up for justice, and listen?

What would it take to change?

If money could motivate a change (e.g. funders start prioritising anti-abuse studies over early behavioural intervention studies, and existing allistic researchers switch their focus), does that mean that morality and ethics can be bought?

Who should do anti-abuse research: researchers who have always been personally concerned about research, or researchers who have had a cordial working relationship with abusers for many years -- or doesn't it matter?

What potential benefits are there from doing anti-abuse research?

Who benefits?

In what way do they benefit?

What metrics should we use to measure the benefits of anti-abuse research: money, power and happiness?

Why these metrics?

Why not these?

What else?

What would the goal of such research be anyway, that would help us select the measures?

Assuming that the researchers are ethical and intersectionally anti-ableist...

How could anti-abuse research benefit actual autistic people in terms of money, happiness and power?

Definine power, happiness and money in whatever ways you want, for now.

For example, 'power' doesn't have to mean the ability to control great numbers of people; it could also mean being granted agency in matters affecting you directly.

'Money' can mean having more money available and/or having a direct say in what is done with money available for your care.

And however you decide to measure 'happiness', frequent smiling should NOT be used as an indicator.

How could anti-abuse research benefit the non-autistic family members of autistic people, in terms of money, happiness and power?

Are people who abuse their disabled relatives generally happier than people who don't?

Do people always COMPETE for money, happiness and power?

What's the OPPOSITE of abuse, and how do we instil that culture in various contexts?

What's the OPPOSITE of ableism, and how do we drive that?

How could anti-abuse research benefit educators and educational institutions that deal with autistic people, in terms of money, happiness and power?

The benefits of autism research are often framed by the researchers in terms of alleviating the 'financial burden' of autism on the government and its presumed-to-be largely non-autistic taxpayers.

Now, without abandoning this ableist framing, can we make a case for anti-abuse research?

Is it possible that autistic people who are properly served rather than being abused and neglected cost the taxpayer less?

Is abusing and neglecting disabled people cheaper or more expensive than preserving human rights?

In the education sector and in government, are there potential short to medium term losses, with long term gains, or are there any short term gains as well from not abusing and neglecting people?

Generally speaking, to what extent do you need to serve people according to their basic human rights before it becomes cost-effective?

Alternatively, in what ways must you abuse disabled people before it becomes an effective, sustainable smooth-running policy that invites no interference?

What are governments for?

What's a 'successful' government?

What potential benefits are there from anti-abuse and anti-ableism research for the medical profession and the public health sector?

What models already exist for participatory research?

Participatory research means that the community being researched plays a leading role in the research, in collaboration with the researchers.

Autism researchers often view non-autistic parents, siblings, therapists and key roleplayers in autism organisations not led by autists as part of the 'autism community'; thus their idea of 'participatory research' doesn't place actual autistic people in a strong leading role.

Anecdotal reports suggest that many autistic people are abused by parents, therapists and systemically also by some powerful autism organisations.

To what extent should 'participatory research' in respect of autism be guided by non-autistic stakeholders?

The #CRPD states that 'representative' groups only count as being representative if more than 50% of the governing body of the group actually has the disability being represented. (Nondisabled parents, and service organisations without this 50%, don't represent disabled people.)

Should research into the abuse of autistic people be 'participatory research'?

When participatory research on abuse is aimed at understanding the experiences of a wide variety of autistic people, should the autistic consultants include nonspeaking people and people of colour? Should they include institutionalised people and poor people?

What are the risks to the quality of the research by including or excluding them?

What practical difficulties are involved in including them?

What accommodations are needed for abuse survivors giving their input on research goals, study design and results interpretation, given that the entire topic can potentially trigger PTSD or cPTSD reactions such as meltdowns and dissociative episodes?

Do autistic people who were abused far less than others have anything of value to add to the conversation?

Do parents, educators, therapists and institutional leaders add value to research if they are known by disabled people to be allies against abuse?

Can people frequently accused of abuse, and people who have been found guilty for abusing or murdering autistic people add value to the goals/and study design of abuse research? If so, in what way?

For the next questions, we must assume a few things, such as: nobody is perfect, organisations are not perfect, many of us are guilty of some kind of abuse (e.g. abusing a friend), repentance is possible, abused people and human rights activists can also be abusers, and...

We need to start somewhere, but we probably wouldn't want to have the worst abusers leading the research.

So... How many non-frivolous research papers do you see potentially coming from the questions so far, assuming that the money was there to fund the work?

What should the selection criteria be for the lead researchers? Or, who should set these criteria, and why?

Do the people serving on ethics committees in autism research be given training in what ableism is, and in the #CRPD and regional disability laws and regulations?

If so, what kind of training would be meaningful, and who should provide it?

How detailed should it be?

Can a crash course in ableism and human rights change anything? If so, what and how?

What one thing could everyone start doing right away to reduce the abuse perpetrated against autistic people, and disabled people in general?

Is abuse always active? Is NOT doing something abuse or neglect, and should the punishment be different? Should abusers be punished, or if not, what should happen if they're found guilty?

Is it good or bad to grant a nonspeaking person access to communication device only once they have reached certain behavioural targets?

If it's bad, how bad is it?

Is it abuse?

Is it good or bad to ignore the recommendations of autistic people when selecting therapy for a certain autistic child?

If it's bad, how bad is it?

Is it abuse?

When is it a good idea to ignore the advice of autistic people?

(This is not intended as a leading question.)

Many autistic people say #ABAisAbuse. Some say it is not. If it IS abuse, then at what leverage point (level) is change needed? To what extent does the answer also count for other practices which people say are abusive?

https://twitter.com/ekverstania/status/1414371644299169797?t=gmTUM9B4DN2qHtCKGOdGxw&s=19

Could researching the abuse of autistic people lead to a witch-hunt and the branding of innocent people as abusers?

Could NOT researching abuse have benefits for abused people, and could it help to prevent further abuse?

Quality of Life (QOL) research is a category of autism research. The abstract of this review of QOL studies doesn't list abuse as a major determining factor in the quality of life of autistic people.
researchgate.net/publication/26…

Now, without actually reading the full article, just guessing, why would you think that would be? Is it that the researchers weren't looking for abuse, or that not many autistic people are abused? Or something else?

This small study attempts to look at what may be missing from prior QOL studies by engaging actual autistic people in identifying things which make their quality of life better (or worse).
liebertpub.com/doi/10.1089/au…

What are the merits of this study?

What could be done better in future research of this kind?

This study indicates that some measures of QOL in autistic people should be autism-specific.

The researchers recognise that their research is a start rather than a final answer.

https://twitter.com/CC_at_YCTAC/status/1462565164285321220?t=2Njc4V9IUVHVNcGjLK38iA&s=19

Self-reports by individual nonspeaking autistic people indicate that access to robust AAC is essential for QOL. Up to one-third of autistic people are nonspeaking. If the above study is repeated, how many nonspeakers should be surveyed?

https://twitter.com/ekverstania/status/1312542821384060928?t=7GXjubUjV7DNdElv2BOEOQ&s=19

Do the QOL criteria identified by the autistic people in this small study give us clues to the types of abuse which autistic people experience, beyond what other people experience?