We are different not defective: Neurodivergent individuals and their supporters speak out in response to ‘$5 Million Grant Awarded to Make Autistic People Mask’

These are community members responses to: $5 Million Grant Awarded to Make Autistic People Mask in Job Interviews Based on the  National Science Foundation’s $5 million grant given to the Yang-Tan Institute of Employment and Disability “to help create better job outcomes for people with autism spectrum disorder.”

Grant link

Samantha Craft painting of feeling like she is on the wrong planet.

*Why should I, an older guy, have to learn better how to hide “the real me” from the world. I’m fed up with the anxiety, depression and despair to the point of wanting to be done and give up? I’m trying so hard to make my way and be myself.

*This…..is….horrible.

*The bigger take away is discrimination is being condoned rather than admonished

*TRIGGER WARNING. These things sound like a nightmare in a workplace, let alone at home. “A social robot for use in home environments to improve resilience and tolerance with job-related interruptions…” I cannot function in traditional work environments because of my ASD. Just the idea of having the same stressors in my home, the one place where I can relax and just be without anyone trying to change me, is causing me anxiety. If it became reality, I think I’d probably commit suicide.

*I’ve read it. Wtf!! I will try and make a blogpost in Danish. Unfortunately many of our own (Danish) studies ate just as stupid.

*The only thing interviews do is find out who is good at interviews. Being good at interviews doesn’t mean you’ll be good at the job, and vice versa. Its like the job is flying, but the interview is swimming. If you’re a duck, you’re fine. The fish will do great at the interview but not so good at the job. And if you’re a bat, you’ll fall at the interview stage . We’re all bats trying to learn to swim.

*Really? When will all these researchers learn to ask what help autistic people want, or if they even need it? I would never presume to know what would help someone with an issue I have never experienced.

*My first reaction without reading….WTH??? I’ll be back after I read.

*This is so frustrating. 😣🤮🤦🏼‍♀️

*Dehumanizing, very sad💔

*Here’s my main comments upon reading the article and your comments: 1) I agree with every thing … wrote as commentary; 2) I am so so so glad I am now over the age of 65 and don’t have to put myself through the torture (which would be even greater with this AI stuff – one of my former occupations was related to AI resources and capabilities, and this is definitely NOT a good use of such technology – I can think of much better, related to AI tools that help the autistic person recognize the specific kind of neurotypical toxicity that is going on :)) of having to go to one more job interview. I put my health at serious risk now at my age if I engage in masking. And my only alternative is going verbally down into either muteness or incoherency.

*Stuff like this keeps reminding me of conversion therapy. Damaging.

*This sure doesn’t sound like encouraging diversity in the workplace. Just more ways to tell you that you don’t fit in and it’s something wrong with you and not the process. What happens after the interview when they find out who you really are?

*Unfortunately it’s not hard to imagine experimentation on other minority groups because it’s happened a lot. It’s way past time to stop it for all.

*This is why HR should NOT be the one conducting the interviews because they will decide who to hire based on how well the interview questions are answered according to them. If anyone should be conducting the interviews, it should be the direct supervisor of said employee, and a project portfolio should also be allowed in the interview.

* … weigh in on priorities so that ableist studies like this won’t be approved. That $5M would have been better spent on studying how to help autists with PTSD from being forced to mask so that they could potentially be able to someday re-enter the workforce or empathy training for abled people so that they won’t feel the need to force us to conform.

*Wow, the sad fact is that so many of us who were not diagnosed as children, decades ago, have been battling for years to successfully unmask. We hid our idiosyncrasies, trying to appear ‘normal’ leaving us full of residual stress and a massive dose of cortisol surging through our compromised bodies. Why can’t we be appreciated as we are? We are innovators, disrupters, we notice things that others don’t.

*Before we can become anything we have to first be our true self.I am so sad to read this. I feel the weight of the world on my shoulders as an autistic trying to help parents think differently and also to change people’s mindset about ND employability. So so much work that needs to be done…😰

* It’s so demeaning. We would be othered by an AI system.

*Heartbreaking and definitely a step backwards!!!

*That’s horrendous I’ve been made to mask most of my life and only through you which led to others have I found my tribe, my place in what was a hostile world. Masking is such a complex and difficult thing why would they want to cause pain? It’s like telling me to discard my wheelchair and crutches and pretend I can walk. It’s like telling my black son to paint himself white because of racists.

*Someday I hope to live in a society that can accept and understand differences instead of trying to stuff us in a box we were never meant to fit in.

*I still haven’t taken the autism course my job suggests I take. Why? Because, I am autistic myself and know how to support my neurofam. And the course is ABA based, and faciliated by non-autistics. That’s like taking tennis lesson by someone who has never played tennis.Sounds pretty ridiculous doesn’t it?

*So they want to have robots teach autistic people how to act more like “normal” people. Riiiight.

*How about researchers spend time figuring out how to teach neurotypical or allistic humans how to have more empathy, integrity, and respect for their fellow human beings? How would they feel if they, as full-grown adults, were subjugated to robots in their homes, VR-simulations, daily monitoring, and screening to ensure they treated people ethically?

*Massive backward step. Perhaps a better understanding of the social model of disability might help these people learn some humanity. I’m unlearning my masking on purpose for the sake of my mental health, and educating my employer while I do so.

*Demonstrates a profound misunderstanding of autism.

*Doing job interviews in the 1980s 1985-1986 led me to an epilepsy diagnosis in 1987. Even when I did get the job once, I was accused of not listening because I was trying eye contact which hurt my eyes and me wondering what it meant meaning. I couldn’t auditory process the interviewer. That sort of thing triggered epileptic seizures.

*I would be interested to see how this got past an ethics committee and can foresee problematic applications of such technologies being used not for ‘research’ purposes but as something people must submit to in order to continue to receive either unemployment or disability benefits.

*The idea of work oriented ‘training’ being carried out in a person’s private home is also potentially an issue around interference in a person’s right to quiet enjoyment of their home. So while participants in a research study may sign up and give consent to taking part in the study, presumably in return for financial inducements, what of the future applications and envisaged uses eg. by government employability schemes, who typically have strict adherence criteria to continue to receive support?

*Awareness training all round is really the key I think – people identifying as neurotypical need training in understanding autistic and neurodiverse people and vice versa – people have different abilities and need to be celebrated as such. There are plenty of situations where not being autistic for example is a disadvantage and could be seen as an impediment!

*We need to stop ‘other-ing’ people and acknowledge and accept humanity in all its variations and get better at recognising each other’s strengths and working with them.

*We’re different, not defective. Do they have similar programs to make people act more Causasian or more Heterosexual? Didn’t think so. A hard pass on working for every company that approves of this. I hope someone sues & wins big. #Bullshit

*Here’s a novel idea: don’t make us do interviews. Let’s just have an informal chat over coffee, followed by an on-the-job trial. Almost every job I ever did was got by going temp to perm. Use the money to give workplaces autism awareness training instead. Just about every job I left was because of bullying in the workplace.

*Like seriously?!? How did an idea like this get as far as funding??
I had a very strict upbringing and can mostly function well enough to get and keep a job. I follow what I’m supposed to do and do it well. On my hiring team (6 months training) near the end they had an activity. Everyone decorates a small glass jar puts it on their desk and then everyone goes around to everyone else’s jar and leaves a note with something nice written on it about the person. A lot of the comments left for me said ‘very smart’ and/or ‘eccentric’. I hadn’t thought eccentric was a good pronoun; so I asked my trainer about it and was told they meant it in a good way 🤷🏻‍♀️…..
This does seem similar to conversion therapy and I really don’t like it. I’m also Trans & Lesbian and employers wouldn’t dare try a quasi-similar technique for those aspects of myself.

*I was very good at masking. I assess a person and then based on my previous experience with similar acting people I change my body language to try to make them comfortable. Well, I got a serious permanent injury and then burnout. I now don’t have the mental capacity to do that. At times it takes all of my mental strength just to not drop to the floor screaming in agony. So now I am somewhat jerky when I talk to people because I don’t have the ability to concentrate on all the finer movements. No amiu t of training would help. I can no longer be on a constant hyper vigilant constant alert status so as not to ‘upset’ the neurotypicals. They scream that basic manners aren’t hard yet they mean manners *they * demand. They do not want to do what *we* would consider good manners to us.

*$5 million to promote a wholly inappropriate practice. We are autistic, being autistic is who we are, it’s how we behave. Accept us!

*This is not okay and not helpful! That money should be used to improve the workplace not try to change Autistic people!

*Wait- can’t they put that grant to better use helping employers retool the interview process so autistic people can actually land jobs?? It’s not that they aren’t capable, it’s that the interview process tests skillsets that often aren’t even related to the actual job!

*Let’s throw yet *another* obstacle in the path of those who are already devalued. Remind me again what percentage of those with autism are actually employed full-time in jobs that can support them??

*WTF …. really WTF. As an autistic women I find this deeply insulting. I would have thought investing money in educating NTs would be money much better spent ….

*But if they’re taught to mask, isn’t that deceptive? And if they mask and then have problems at work, how can they then ask for help, to have their workplace or schedule to be adapted? Wouldn’t the employers feel rightly justified in thinking that they’ve been sold short by their employee who did this. Lastly, in the UK we have the Disability Discrimination Act to make unwilling employers make necessary adjustments to level the playing field for those with disabilities. Surely that would be like training someone to go for the job of lifeguard at the swimming pool when they can’t swim?

*Why don’t they put that money toward training employees how to treat autistics with some level of human dignity once they are hired.
Why would we have to teach people that?

*WTH – I cant even focus on that right now – it just took me to a place I don’t want to be. And unfortunately now I will obsess on it for an hour or more while I go yank weeds or chop something in the garden. oh – its 4:20… perfect timing. change us indeed. make us mask more as if thats not already happening. Bite me. In all caps. this is the gut punch.

*Well when you read through the requirements in job description and follow them, get evil eye from coworkers as they very often do something totally different. You see rules broken by who are in control and ask them why. In the end they will find a way to fire you.

*…I expect a bit of pisstaking with overbearing employers, but that’s a bit too far, thanks…

*I certainly don’t need help masking; I need environments that don’t require masking. I need help having enough energy to do the actual work that masking drains from me.

*Neurodiverse people make the world a better place! We should be accepted as such!

*Welp…this seems like an expensive misunderstanding of autism….

*“Coach” culture has an unequal hierarchy. They are the coach and you are the thing they study to figure out how to coach.

*I was homeschooled from 1st till 9th grade, therefore lots of ‘normalcy’ coaching from my mom in a loving environment . . . I am still unsure where the lines between my masking or not are, and I have never gotten a job that I had to interview for. I have done more work on my side than hirers have. They need to pick up their slack, not give us more to do.

*Christ

*Really…. ffs

*Masking in interviews gives a false sense of our default state when on the job..everyone puts on their “best face” in an interview but the far reaching consequences post interview are deeply misunderstood. (Im ok with my full name being used).

*this is nuts.…ummm i dont think so…

*I quit. Yes before i even start.

*What an insult.

*As I called it: ABA in the Wild.

*I don’t know,maybe look at WHAT RESULTS ARE NEEDED ie productivity? Otherwise —- them.

*How about we just make them accept us as we are instead of us having to act like we’re not autistic?

*Stuff like this keeps reminding me of conversion therapy. Damaging.

*I do well in interviews- can’t keep the job for long but I can get them.

*Masking during an interview got me a job. Being unable to continue to mask through the job got me fired.

*Compliance culture run amok . . . go to any lengths to avoid acknowledging our humanity or our existence.

*This is terrible. It reminds me of training lab rats with electric shocks.

*So we have the money and technology to throw at coaching neurodiverse people but not to coach businesses on how to be more adaptable for neurodiverse employees? Gotcha.

*This is painfully reminiscent of the negative pressure I felt at school.

*I am always reading about how important it is to be be genuine and your “authentic self” in the workplace and such. (a common topic on LinkedIn)
Apparently, that doesn’t apply to being #ActuallyAutistic? 🤔

Samantha Craft Painting: Waiting to Be Seen. (How society as a whole does not understand the autistic experience.)

For information about this blog and author see myspectrumsuite.com

Samantha is the author of the well-received book Everyday Aspergers.

2 thoughts on “We are different not defective: Neurodivergent individuals and their supporters speak out in response to ‘$5 Million Grant Awarded to Make Autistic People Mask’

  1. Masking might as well be equivalent to lying at a job application: Instant grounds for dismissal when they figure it out. That’s what occurs to me. Juggling between reality and trying to fit in is so difficult.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s