Thread by @AutSciPerson

I know people are done tweeting about #StopSpectrum10K for today but like,

seriously I'm just so stuck on how SBC thought this was a good idea? Like I don't know who's original idea it was but he's kind of the lead (based on the team description)..

Why is the autism genome such a goldmine to geneticists?

Like yes, -intellectually- it's an interesting problem.

In actual practice, it's dystopian and absurdly dangerous in our current society.

THE FIRST PART DOES NOT TRUMP THE SECOND PART.

#Spectrum10K
#ActuallyAutistic

I read a few tweets with the Spectrum10K hashtag and like..

I mean truly it felt like people were commentating on some alien species they wanted to dissect.

It's honestly so creepy to read about how "interesting" autistic genes are and "what a complicated problem!" it is.

I really don't see a lot of humanity in how non-autistic people, especially genetic autism researchers, talk about autistic people.

I can see the intellectual intrigue while still valuing human beings as people.

I don't think this has occurred within autism research yet..

This might sound a bit self-centered,

but it hurts to know that even if I had a PhD right now in neuroscience, my words wouldn't matter to those non-autistic people literally doing research on a group I'm a part of.

Because I'm autistic.

We are worth less to them.
We "don't know what we're talking about."
We're "anti-science."
We're "paranoid."
We're "too high-functioning."
We're not an "expert" like the allistics.

These are all ways to shut us up and discredit our experiences and voices as autistic people.

One of the actual "ambassadors" of the study was insulting autistic people today.

The "ambassador" to a research study that is supposed to have the end goal of increasing quality of life in autistic people.

The researchers didn't shut the ambassador down. No one apologized.

We will always be reduced to as small of an impact as we can.

We use twitter? We're just trolls!
We complain about something? We're just paranoid!
We have issues with something? We don't know anything about "low-functioning" autistics so how dare we have an opinion!

There will always be a scenario where a non-autistic person can discredit an autistic person's experience.

It is everywhere.
It is in the research design.
It is in how researchers interact with us (they don't, at all).
It is in how desperate autistic people are to be heard.

Non-autistic people who have no understanding of the history of disability, the historical and current abuses that esp. marginalized autistic people face, and with no context,

have continued to gaslight us instead of listening & taking action with us as equal partners in change.

Autistic people pay non-autistic people's livelihoods -

Autism researchers
ABA therapists
Staff that electrically shock disabled people at JRC (still happening this second)
Autism charities
Any type of "autism intervention" or therapy

Yet we cannot reside over any of it. Why?

I want to scream about this situation honestly,

but there's actually nothing more to say.

An autistic person even met with them and said their concerns (why they weren't going to participate) last year, and the researchers completely ignored their comments!!

We've had this conversation in circles.

We've explained why this could be potentially very harmful to autistic people.

We have reached out to the people involved.

We have explained that most of us don't want a cure (esp. not prenatal screening).

Do our lives just not matter?

Is it more important to look like you're helping autistic people,

than it is to actually help autistic people?

Even if that help means stopping what you're doing?

Honestly I kind of wonder sometimes if these people have hearts. It's so disappointing and ruthless tbh.

I actively -want- to be able to trust researchers, especially people researching autism!
That would be great!

No autistic person WANTS to be arguing about this, but we literally have to because future autistic people in the world matter,

and current autistic people do too.

Most autistic people aren't sitting here trying to find a fight with a research!
We just want non-autistic people to listen to us and actually consider what we are saying and respond to us like humans with value & lived experience!

We absolutely DESERVE answers & transparency!!

We are not bad or awful for wanting that.

We are the subjects.

They should be wanting to get our trust and respect, instead of using vague half-baked statements to avoid a real answer or not having an answer in the first place.

They should care about us.

[I'm calling it right now that someone is going to come on this thread and attack me for using the word "ruthless" - but that's sure how I feel about ambassadors insulting autistic people for having concerns about a DNA database of autistic people's DNA.]