Kaligirwa is a noted autistic autism scholar and advocate. They recently had their advocacy and motives challenged after they asked an autism diagnosis and resources company, Embrace Autism, whether it was behaving unethically in coaching people on how to take an online autism screening test. We wanted to know more, and so we talked with Kaligirwa about the incident and its repercussions both for them and for the already-questioned validity of autistic self-diagnosis.

Kaligirwa: My name is Kaligirwa. I’m an advocate and an autistic scholar. My work is focused on misinformation in the autistic community, as well as education and intersectional disability justice advocacy.

Thinking Person’s Guide to Autism (TPGA): That’s very needed. Also people might know you on social media as Black Spectrum Scholar?

Kaligirwa: Yes, that’s my username on most platforms. I’m most active on Instagram and Threads. But I’m also on Substack and TikTok.

TPGA: I’m really grateful to you for being willing to talk with us. Today we’re talking about your incident with Embrace Autism. Could you summarize the issue, for people who aren’t already aware?

Kaligirwa: On May 5th, I believe, Embrace Autism [an online autism resource that provides both free and paid autism screenings] had published autism self-diagnosis guidance, building on a paper from Sturm et al 2024. Embrace Autism stated that because the RAADS-R (an instrument to assist with adult autism diagnosis) has screening questions that can be difficult to process for autistic people, they were suggesting to ignore two of the responses. And these responses specifically relate to when the traits have appeared first, if the traits have always been present, or if they were present before age 16.

As autism is a neurodevelopmental disability, I thought this was an ethical issue. That Embrace Autism was presenting this guidance—that wasn’t part of the study that they were citing—as to how to complete the RAADS-R, when that way wasn’t validated by studies. And even the authors of the study they were citing themselves were stating that, the way that the study was set up, that they were more talking to other researchers or psychometricians about what changes could be made to the RAADS-R format, to simplify for users of the tool in the future, but they weren’t sure whether it would make a meaningful difference. That’s why they suggested at the end of that paper that there should be more research.

Basically, embrace Autism took the findings from that research and they turned it into public-facing advice on how people should now take the RAADS-R.

So, the following day, I went to my Threads account, And I called them out. I stated that it was unethical issue, from my point of view, if an assessor suggests that people take tests in a way that doesn’t necessarily align with your lived experience, because you’re coached on which answers to choose and which to ignore. And the point of a screener like that—if we’re going to talk about the most ideal conditions—is to respond based on your lived experience.

Original comment from Black Spectrum Scholar on Embrace Autism’s recommendation

Something important that needs to be stated about the RAADS-R is that as it was developed as a portion of the Autism Quotient instrument created by Simon Baron-Cohen and team. The autism quotient was supposed to be sent in the mail, but the RAADS-R was supposed to be given by a clinician, which gives the autistic person the possibility to elaborate on some of the questions. For instance, would you rather go to a party or a library?

But a lot of autistic people tend to struggle with that question format, because it depends what type of party, what type of library, what time of the day and stuff. So it’s not much the answer that matters, it’s the rationality that matters for the clinician to be able to get that from the autistic person.

Embrace Autism took that RAADS-R format and then put it up as an online screener, to increase accessibility and self-exploration. But that means there’s no structure or form, or support from a clinician to be able to elaborate on the answers.

Embrace Autism’s supposed solution to that was to tell people how to ace the test, so that they can get a higher score. But if we already reduced some of the validity of the test by putting it as an online format, where there’s no longer supports for ambiguity that we struggle with, and you’re left alone to do this questionnaire, the solution isn’t to even lessen the validity of the questionnaire by telling people to not answer based on their lived experience, but instructing them to choose some responses and other responses.

So, I do this post, and a few people react and are pretty concerned with the advice that’s given, because Embrace Autism is a for-profit diagnostic company. They provide free online screeners, but they also provide a tiered service: You can get a screener with a professional that would tell you that you’re likely autistic, but that’s not going to be able to give you a diagnosis. Or you can go upwards to a full diagnostic report, which is around $2,000 if I’m not mistaken. It’s a freemium model, where the authority and the legitimacy that they get from having free resources helps them then attract self-suspecting autistic people,

Embrace Autism is present in Europe, in the United States, in many provinces in Canada, they’re pretty much global. That is why I saw this as an ethical issue, as the last thing providers are supposed to do is tell their potential patients how they should answer screeners, because there is a difference between explaining what a question means in context, and telling people straight up to ignore that part of the screener. The purpose of the screener was to know whether those traits appeared in childhood, or whether they appear in adulthood, so these are important parts of the screen—as it was designed.

Now, a few days pass after people have shared their concerns, and my post at the time now had approximately 10,000 views on Threads. Then Embrace Autism started commenting on my posts, I think they left about 30 comments. They commented to me that I hadn’t read the study. I had read the study. That’s what you do when you’re a scholar. I read!

TPGA: My observation has been that you read the research deeply, and you have a very deep knowledge of autism research in general.

Kaligirwa: I try to. If I don’t know an area of autism research, it’s likely that I just don’t talk about it. That’s why I don’t talk about RPM, or Spelling to Communicate, because I haven’t done research. I’m not the person to have an opinion on something that I haven’t researched. That’s how I operate. 

So not only I had read the research, but it had been in my research library for two years. And at that time, I helped a friend write a script about the video, so I’m like, yeah, of course I read it.  Why is the assumption that I hadn’t read it first?

And at the same time telling me that I hadn’t read its research, they were telling me that I was, slandering them for expressing ethical concerns. About the same time, they also sends threats to other people who were commenting about their concerns, including an autistic autism researcher that had also commented that [Embrace Autism] were misinterpreting the research.

Embrace Autism then went on a tirade about how, “People are smearing us, you’re gonna get sued left and right.” And they found my professional Instagram, and they messaged me there that they needed my address to sue me, and they also found my private Instagram that is undisclosed, that I don’t talk about on my main channel—and they also sent me a message through my ResearchGate page, asking me to send them my address, so that they can sue me. I just responded very publicly, saying that if they wanted to sue me, they could sue me, because I know that they didn’t really have a case since expressing an opinion is protected.

Afterwards, they blocked me on Facebook—and still have to this day—and also removed me from the Embrace Autism group I was in. They blocked me on Instagram, briefly, but unblocked me the next day, when I made an infographic explaining the drift of the situation and why it was questionable that an autism organization would threaten autistic people for being inquisitive when it’s pretty much part of our distinct nature to be really inquisitive.

After they unblocked me, they started commenting on people’s comments in my comment sections, like to Dr. Megan Anna Neff of Neurodivergent Insights (who’s really popular on Instagram, and which I love dearly; we have collaborated in the past) basically trying to placate them, and, trying to convince them that they hadn’t acted unethically.

Kaligirwa describes being treated specially dismissively by Embrace Autism

That’s when Natalie Engelbrecht,  the owner of Embrace Autism, also messaged me privately on my Instagram, responding to my story, telling me that their behavior had nothing to do with race, that basically they were raised not to see color, they raise their children not to see color. They were like, “My favorite author is James Baldwin, my mentor is Mandela.” I must add that Engelbrecht is from South Africa originally, so that’s probably why she was saying that Mandela was her mentor. 

As she was saying that, I said you can’t invoke the presence of Black and brown or otherwise racialized people in your team as a way to deflect from the potential of harming people, because first, it’s tokenization—so that in itself proves that there is some structural racism happening within the business—but also it doesn’t prove that you’re incapable, as a business owner, of not doing racial harm. 

I left it on that. She said, “Oh, I’m not going to convince you, because you are already set on your idea, when we could have just used a discussion to sort this out.” I responded that “This is what I was essentially doing when I made the first post, but then you started threatening me. If you wanted to have a discussion, we could have had ten discussions before this happened.”

She stopped messaging me. Then the next day, I got a message that she was grounded from her social media account, and someone else would take over. And she apologized for the threats privately, saying she recognized the nature of weaponizing the justice system against racialized people and stuff.

I said that this all happened publicly, so, I’m expecting you to acknowledge this publicly. You’re not going to send me a little private message that, “Oh, I’m grounded off social media, teehee, but I’m still, like, a CEO, and there’s no apparent structural change, but, like, my bad for, like, threatening to sue you for saying you disagreed with what we did.”

At the same time, they [Embrace Autism] had posted a message both on their Instagram and on their Facebook, stating that they had never given guidance on how to complete the test. But the issue was—and probably their social media account was still managed by Natalie at this point—that they went ahead and edited the first post they made, the one I critiqued. But the edit history was still available, you know on Facebook how you can see the edit history?

TPGA: Yes.

Kaligirwa: People opened the edit history and saw that it was edited the same day as the “we did not give guidance” statement was made—and we’re like, you’re being dishonest about never having given advice, and your own edit history is telling on you.

And then they decided to delete the post. They were explaining themselves, deleting the original post with the edit history, and just blocking from their group anyone who would mention any negative comments. I think they reduced their group to… 200 people?

TPGA: Wow.

Kaligirwa: I’m in the Autistic Researchers Researching Autism (ARRA) Facebook group. And someone there said that they wanted to invite me to a podcast, to talk about the situation with Embrace Autism. I said sure! And then that person was removed from the Embrace Autism group, just because they wanted to get my perspective.

TPGA: Again, wow.

Kaligirwa: When that person asked why they were removed, Embrace Autism said something like, “Oh, we’re trying to maintain a group that prioritizes positivity” and just some pre-written statement. And that person said, I didn’t even criticize you, I just wanted to learn about this history from the person, from the other point of view.

Embrace Autism had a massive witch hunt of anyone who was just talking about the issue, and deleted all the comments and everything, so essentially, in the Embrace Autism group, it’s now as if nothing happened.

TPGA: Wow. Do you have screenshots of the original posts and discussions?

Kaligirwa: I have screenshots organized by dates, and timelines.

TPGA: So you have all the receipts. All the receipts.

Kaligirwa: I’m someone who understands how social media works, I know how to create a network effect with people that follow me.

From the get-go, I knew that I wasn’t interacting with a professional social media person, because when I criticize people who are professional social media managers, they just tend to ignore me—because they know that it’s typically worse if you respond to me.

That’s why I figured that it must have been only Engelbrecht who saw all the criticism about their business, and was just being reactive. And then at some point, someone in the business caught up, cut off her access, and decided the way they were going to manage it was just to pretend it never happened.

TPGA: This is incredibly disappointing. Because, first of all, how they treated you is wrong in every way. And secondly, I have always thought that their resources were fairly good, and I’ve shared a lot of their materials on TPGA social media. There are so few good resources out there that we could refer to, so to see another one go down is just awful.

Kaligirwa: There are alternatives to the assessments and stuff they offer. I know a website, NovoPsych, that’s an alternative if people want to divest from Embrace Autism.

I consider myself an autism education hub. There’s a lot of types of educational resources that I provide, but the difference between what I do and what Embrace Autism does, is that Embrace Autism at the end of the day is a for-profit company.

TPGA: Yeah, similarly, at TPGA we’re all volunteers. Our only incentive is to help people get more autism information, and to do community building.

Kaligirwa: Exactly. I have no other incentive. I have a day job, I don’t need to be doing advocacy. I just do that because I want to give back some of the information I’ve received. I strive for accurate and more evidence-based information about autism.

You know how there’s fat positivity, and then there is body neutrality? I try to be autism neutral. I’m not  glamorizing autism, but I’m also acknowledging that there are glimmers in the autistic experience. I try to keep a balance in my approach.

Kaligirwa

And I think that this situation just showed that the truth isn’t always… the best for the bottom line of the business. In this case, [Embrace Autism] functionally admitted that I was correct from the get-go, because they edited their post. And people realized that they admitted that I was correct by editing the post. And then the CEO admitted that the threats were racially charged and harmful.

So I’m thinking, if you did all that privately, but you won’t do that publicly, I see that as an  incongruence between stated values and actions, and that’s not the type of business that I want to support—not if you can’t do what’s right for people when you’ve harmed them, and especially for community that you claim to serve.

TPGA: Yeah, it’s incredibly disappointing, because if their goal is truly to serve the community, and if they are told their tools have errors in them or are being used incorrectly, you would think their reaction should be, “You’re right, let’s fix that and make sure it’s actually the kind of tool we want serving our community.” But it seems like what happened is that they reacted badly when you endangered their business model.

And then, to have such an unprofessional reaction, and to make it as though it’s a personal thing when you’re being objective, is just absurd.

Kaligirwa: Yeah, it was really absurd, but what really gets to me is the backlash of how some people tried to frame the discourse as being about people who support autistic self-identification versus people who don’t support autistic self-identification—when this all started as a discourse about psychometric validity. About how filling a questionnaire in the way that it wasn’t intended voids the results, and therefore makes it useless.

Some people said that, well, autistic people need support to get through the questionnaire. I agree, that’s how it was designed originally, as an in-person tool to be given with the assistance of another person.

The same people said we don’t have that support anymore, so I’m like, yeah, but the solution isn’t to make the results even more invalid, by filling out the RAADS-R in a way that wasn’t intended. The appropriate response would be to provide people accommodations so that they can space out how they fill it out, or do it in sections. To have professionals that are dedicated to providing clarification around you. Accessibility tools that wouldn’t compromise the validity of the questionnaire. 

But telling people how to answer doesn’t support self-identification, because if the tool is meant to distinguish between an allistic person and an autistic person, it doesn’t do that anymore—because if instructs people in how to complete it in a way that’s not intended, you’re not helping autistic self-identification at all.

People often say that there is harm in the BPD or bipolar misdiagnosis, that autistic people often get, but, I think there’s also harm when a person believes that they’re autistic, and then they get support for autistic needs, but their needs are not based in autism, their needs are something else. The point of autistic self-identification is trying to see whether your experience aligns with autism, without the presence of a clinician. But if the tools you use are biased, or you use them in a way that’s not intended, you’re not going to get further clarity.

I felt like, from the get-go, my perspective was misconstrued as someone who opposes autistic self-identification or self-exploration, when in reality, I strongly support autistic self-exploration, but If you do it the wrong way, it’s going to get people who want that diagnosis the result they want—but is it going to give them more clarity? Of course not.

TPGA: What concerns me as well is how the autistic community is already undergoing attacks from outsiders who insist that self-identification is not valid. And if you have flawed tools that are giving flawed results, then that just gives the doubters more ammunition.

Kaligirwa: Absolutely. The people who are late-identified, a lot of them are, like me, Black people, women, queer people, etc.. We already have our autism diagnosis questioned. If companies like Embrace Autism give harmful advice, is that going to lead to professionals doubting whether these diagnoses are legitimately obtained, or asking if diagnostic fraud was committed in filling those screeners?

Embrace Autism claims to support autistic people, but their behavior and the advice they’re giving is not supporting autistic people in the way that they think it does, it’s just supporting people who want to get that result. And unfortunately, there are more people that relate to the autistic experience than people who are autistic. And there’s nothing wrong with relating to the autistic experience, but for some people, there’s other reasons as to why they might relate to the autistic experience. 

There’s so much misinformation on social media, and short-form video content doesn’t help. It’s harder to educate and challenge misinformation than to spread misinformation, because people can spread misinformation so easily. There are already a lot of laypeople spreading misinformation  because they don’t have access to better information, so can we not have professionals spreading misinformation when they have the capacity to know better?

I have a lot of empathy for people who spread misinformation and that are just misguided, but I don’t have a lot of empathy for professionals who spread misinformation, and who know better, and who are stating that the information they took comes from their study, but the study they’re citing doesn’t support that.

People who follow Embrace Autism can’t necessarily understand autism research by themselves. Or they don’t have the time to read the research, it’s not their thing, and they’re more concerned about gaining useful information that can help them understand themselves better, than in going through a lot of academic jargon.

TPGA: Research writing is not accessible. At all.

Kaligirwa: There’s a dependency relationship that Embrace Autism creates with its audience. Where it provides good validation, plus also education. But there’s that fine line that we never know what’s information, and what’s just there for the sake of validation.

Some folks are trying to frame the Embrace Autism issue as a poor little misguided person who just made a tiny mistake. I don’t know if it’s American culture, but there’s a lot of personification of businesses, where people treat businesses like they’re friends. Businesses are not your friends, people. Businesses would leave you dead in the street if you weren’t useful to their bottom line.

I’m a staunch anti-capitalist, I know a lot of people are more tolerant of capitalism. For me it helps that I have a background in marketing, because I can see that, yes, these free resources that they give, it just helps them get at the top of search results, and get more leads. But they’re not benevolent. They’re not just giving them out to give them out.

TPGA: Anything that’s free means that you are actually the data, right?

Kaligirwa: Yeah. Exactly. And there’s so much data. Imagine how many people fill out the Embrace Autism questionnaires.

TPGA: That’s a little bit scary. Thank you for taking the time to talk to me. Thank you for your advocacy. 

Kaligirwa: You too.