Autism Interview #199: Ira Kraemer on Autism Research and Inclusion

Ira Kraemer is an autistic self-advocate with a Masters in Neuroscience. They have spent the last six years learning about themselves as an autistic person and learning from others in the autistic and disability community. They currently give informative talks, consult on research, write about autism, and educate parents and professionals on accommodating and understanding autistic people. Ira authors the website AutisticSciencePerson.com where you can find a full list of their services. This week they discussed autism research, inclusion, and diagnosis.

How did you become aware of your autism diagnosis?

I self-identified as autistic before I obtained a diagnosis. It’s important to note that self-diagnosis is valid. The person who diagnosed me essentially said that many autistic adults she sees often know more about being autistic than she does and already have identified themselves as autistic. I stumbled upon a YouTube video about being autistic and thought “oh that sounds like me…” and started reading books by autistic authors, such as Shy, Nerdy, and Socially Inappropriate by Cynthia Kim. I still felt absurdly anxious about ever disclosing I was autistic because I didn’t have a “real diagnosis” and I just want to say to my previous self that disclosing in some scenarios could have really helped me. It’s hard to not feel like you’re “not autistic enough” – but if you think you’re “not autistic enough” – trust me, you very likely are. It’s funny how we think that neurotypical “experts” are going to know us better than we know ourselves. I was very lucky to get a validating professional who essentially said as much.

In what ways has autism been framed negatively/positively/neutrally throughout your life?

“Autism” really wasn’t ever on my mind much growing up. I did take an autism test in 7th grade in the middle of the night. I was terrified it would say I was autistic. When it came back as nearing the “threshold” for investigating autism, I put that thought away. “I’m sure I’m just the normal kind of weird.” Again, I thought autism was white boys rocking in a corner because that’s all I’d ever seen about it. It’s almost like I thought to myself, I guess I just have to suffer and pretend to be normal for the rest of my life… It took me quite a long time after I found out I was autistic at 24 years old for that memory to ever come back up.

What kind of autism research is beneficial? What kind is dangerous?

The most important aspect of autism research is to make sure autistic people actually want it, and to truly investigate the ramifications of the research before applying for that funding and especially before publishing it. Autistic people should be involved in the project throughout and as early as possible, including during the proposal, design, and actual implementation of the research. I recently consulted on an autism grant proposal from start to submission and the researchers told me by the end that I significantly impacted the direction of the project just by reframing perspectives and discussing recent autism research. I wish all autism research projects required an autistic researcher on board to help allistic people understand and reframe the “autism” that they have read from the literature or been taught about, by other allistic people.

A good question to ask is, is the research being conducted actually for making autistic lives more supported? Or is the research focused on changing autistic people to fit into inaccessible neurotypical standards? Most autistic people I know prefer the former.

What kind of autism research are you most interested in?

I’m really interested in the research on neurotypical implicit and explicit bias when it comes to autistic people. I think it underscores and solidifies the discrimination of autistic people in our society in general – in trying to access healthcare, trying to get/keep a job, trying to make allistic friends, trying to order food at a restaurant, things you wouldn’t even think of. I’m also interested in the research on negative experiences autistic people have and how that impacts them on emotional, mental, and physical levels. So many autistic people, me included, spend years thinking about how to get people to listen to us, wondering why we get such severe reactions when we were trying to offer a connection, or when they ask for honesty… Those experiences have such a huge impact on self-esteem and confidence and autonomy. If a neurotypical person can just look at a picture of an autistic person and rate them as awkward and not want to talk to them (Sasson et al. 2017) compared to a picture of a neurotypical person, then we have a really long way to go for autistic people to be fully included and welcomed in all facets of our society. It reminds me of when I was yelled at by a receptionist for using a “rude tone” when simply saying a sequence of numbers over the phone.

In what ways is society (or individuals) acting in ways they think are inclusive of autistic people but really aren’t?

“Sensory-friendly shopping hours” which usually occur early in the morning are helpful to a very small number of people and families, but it also tells autistic people that you *could* make the environment sensory friendly all the time (turn off music, reduce speaker volumes), they just choose not to. It’s also unclear whether these hours are for autistic people who are sensory seekers, who have loud vocal stims or pace around, or if they are for autistic people who have light and sound sensitivity and who need quiet or dark environments (to be clear, many autistic people can fit both descriptions).

Neurotypical people assuming that what they find comforting (hugs, handshakes, small talk, eye contact, asking why you’re upset) is what autistic people find comforting is a big one. So many allistic people who try to help me in a shutdown just make it so much worse. Things that have happened when I’m in a shutdown include allistic people trying to actively make eye contact with me while I’m looking at the floor, people putting their hand on my shoulder when it’s completely overwhelming, people asking me why I’m upset and continue to ask me when I physically can’t speak, or when speaking would make my shutdown last longer (the sound of anyone talking hurts my brain in that state). One allistic person actually helped me by prompting me to leave the room and go to the bathroom. This helped because my body freezes up in a shutdown and doesn’t really know what to do, so having that prompt was really helpful. It may not be helpful for other autistic people though. 

That’s the other big one: Allistic people may apply one support strategy for one autistic person to all autistic people they meet without asking us first. I disclosed I was autistic and a staff person turned off the lights. When I said that I needed them on, they only turned half of the lights on. This person thought all fluorescent lights were a problem for every autistic person, not understanding that some of us have other disabilities that conflict with this. A lot of times fluorescent lights are really loud to me (80% of the time), but not all of them are. The best way to support autistic people is by listening to each autistic person and respecting what support looks like to them.

Tell me about your consulting services and speaking engagements. What do you enjoy most about your advocacy work?

I provide coaching services to parents of autistic people as well as professionals who want to increase their understanding of what a pro-neurodiversity framework means on a practical level. I also provide consulting on things such as autism research, sensitivity reading, and entertainment.

I enjoy expanding people’s ideas about what is functional, what is acceptable, what is a requirement, and to put energy where it’s needed rather than putting that energy into the tragedy narrative created by so many doctors and autism professionals. Knowing that it’s okay for anyone to need support or to do things differently can truly open up new and wonderful worlds. It can help both autistic people and non-autistic people alike because our society has a habit of not accommodating each other or even ourselves. I also enjoy helping non-autistic people understand sensory pain, what that really means, and getting creative with what supports can help.

I’m also available for speaking engagements on autism and have enjoyed speaking at STAR Institute virtual summits over the past few years. 

Give your assessment of autism and neurodiversity acceptance in your region. What is going well and where are improvements needed?

People need to understand that autistic adults exist. Autistic adults aren’t seen anywhere aside from the occasional media of a cis white NT actor playing an autistic character. Professional autism spaces should be platforming autistic adults, especially autistic adults with marginalized identities, and autistic adults who are nonspeaking or have high support needs. Autistic adults need to be fully invited, involved, included, and paid, to help guide autism research, help design professional supports, diagnostic assessments, etc. We still need to get the word out that ABA is not a good or helpful “therapy” – that it has ties to gay conversion therapy and the tactics are similar. We still have the Judge Rotenberg Center in Massachusetts which is currently allowed to literally electrically shock disabled people, including autistic kids and kids with intellectual disability. We have a very long way to go before people stop actively harming autistic people.

I do see more allistic allies than I used to in research and professional spaces (particularly in occupational therapy). I do see more allistic people platforming autistic voices in the professional field that I used to. I do see allies trying to do good work, and I hope they continue, and that more people continue to listen to autistic people.

Connect with Ira:

Website and Resources

Autism Consulting Services

Diagram Booklet

Twitter

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