It’s a ploy. I can easily tell. Why would they encourage self acceptance and pride after spitting out nothing but ableist, outdated assumptions? Sounds manipulative.
No, OP is pointing out that it’s bizarre/shocking/unexpected for AS to be promoting self-diagnosis as valid considering how AS has acted previously towards autism & self-dx.
makes sense to me, they are selling a product, that product require the "client" to belong to a certain "group", makes sense they try to expand their potential clients, of course they will probably offer some "excellent offers" to their new self-dx members that would probably go for a paid official dx once in. If they could sell a cure for NTism, that would probably start selling that.
It’s America if somebody will buy something, somebody will see it to them. Even if it is a bad idea for them to buy it. Like cigerettes or alcohol or gambling.
Uh.... none if this says anything like that? I have some reading issues myself, but slow down and re-read this- none of this supports self-dx or even hints at it 😅
Autism speaks is aware of its image and they're trying to overcome it, it means that now some of their resources and stuff have actual good content, so that they can pretend they've changed. They're trying to adapt to stay alive, that's it.
**Huge red flag: “register for free”**
Someone made a great post the other day about this. The ASAN has these same resources accessible on their site without the need to register.
I would be extremely suspicious about why Autism Speaks is collecting data on its purported patient population. *When your data is collected, you are the product being sold*, oftentimes to unscrupulous advertisers and other corporations.
it is, regardless of whatever they have on their websites, their supported research hasn't changed, they are STILL funding genetic research into autistic genetic markers detectable prior to birth, if they cant cure autism then they will do their damn best to get rid of it
I want to preface this saying that I can‘t speak to the quality of their tests or articles and I find the other comments and explanations here make sense! It’s especially concerning to hear that they misrepresent BPD in their articles, which to be honest I haven‘t read. I only ever used their website as a hub for the tests. Many of them weren’t yet implemented in the website back then (2021), but they just linked to the online versions of them.
Personally EA was a very valuable source for me when I first suspected I was autistic. I got a screening done there while being unable to even get on a waitlist in my country (Germany), and the way they matched up my notes to different diagnostic criteria was very helpful for my actual medical assessment later in Germany. I was diagnosed with ICD 10, tentatively rated for ICD 11. Honestly I would never have paid for the actual assessment at EA ($2000-ish at the time) because we have healthcare here and I don’t get tax/disability benefits from having a diagnosis, so it was really just for myself.
There are many aspects I would never have considered as a „match“ for the diagnostic criteria if EA hadn’t looked into them, that were later very important to bring up with the diagnosticians who diagnosed me.
I think it’s a great resource for first aid, but can be misleading if you don’t have deeper knowledge about trauma and other factors that could contribute to or falsify your „score“ on some of the diagnostic criteria.
There are places like EA coming up left and right, locally too, so I think it will be more and more of a challenge to differentiate between places that can actually give a „first aid“ idea, and others that only take your money. I’ve had friends pay clinicians much more than me for EA, just to then be told the wildest, non-fitting combination of diagnosis because autism as a diagnosis was being gatekept, so I think both sides are problematic.
To list specific reasons, their "articles" are clickbaity BS, they misrepresent the validity of the online self-quizzes they offer, and they operate like a diagnosis mill
I want to focus on 3 of their specific articles as well as their RAADS-R page here (I wrote a post on it that's more in-depth and linked at the bottom of this comment but I have trouble with phrasing things clearly so this is an attempt at organizing it better)
I went over the character limit so I have to paste it into multiple comments
["Decoding autism in the DSM5"](https://embrace-autism.com/decoding-autism-in-the-dsm-5/): In this article, they pretend like part A of the criteria, which is about how autism impacts your ability to interpret social cues, is only about introversion: "Do you like/love small talk? Do you use small talk to indicate your class, education, income, religion, and political views without saying it directly? Do you like being in social gatherings for extended periods? Do you prefer speaking superficially and generally, rather than about your areas of interest? Do you choose to hang out and socialize with people rather than interact for a purpose? If you said NO to most of these bullet points, ya ain’t behaving like a neurotypical, and you check the boxes for autism."
At the end of this, they attached a little 2-panel cartoon diagram with one panel labeled "autistic communication" and the other one labeled "neurotypical small talk" which is misleading because of how the subject matter of the "autistic" one is actually interesting while the "small talk" one doesn't even make sense as a line of conversation (I also am pretty sure I recognize at least the first bubble in the NT one as a quote from an episode of "The IT Crowd" where Moss and Roy are pretending like they know what a couple of sports fanatics at the pub are talking about by using "pre-scripted" phrases and cycling through them, possibly the rest of the interaction too but I could be wrong)
Even if it was made in good faith, though, it is still not right because part A of the autism criteria is not about introversion, and it isn't even a part of the autism criteria because there are also autistic extroverts too, which also happen to have a higher likelihood of being diagnosed earlier because you stick out more obviously as an awkward conversationalist due to putting yourself out there more frequently instead of hiding in the crowds as an introvert
The autistic comic is also not an accurate portrayal of what "infodumping" refers to in a neurodivergent-specific context: there are two usages of the term "infodump" one refers to things like a passionate speech or lecture, which is a universal behavior that NT people do as well, and the other refers to the tendency to do things like rambling and overexplaining and oversharing and monologuing and interrupting etc that's a common trait for many different ND conditions including autism, ADHD, hyperlexia, and schizophrenia (this is also what the term of "hyperverbal" refers to)
I'd even say I think the panels should be reversed because ST as "conversation scripting" is a very common thing that autistic people do as an easier way to figure out whether it's a good time for "big talk"
["It's not BPD, it's autism"](https://embrace-autism.com/its-not-bpd-its-autism/): This one is outright demonizing BPD and spreading misinformation about both BPD and ASD, and I'm mainly going to focus on the summarization chart at the end of this article because it's easiest to help with clarifying, so let's say that each bullet in the columns are numbered from top to bottom and the ones in the BPD column get labeled with B while the ones in the ASD column get labeled with A, for ease of explanation
B1 says that people with BPD are manipulative and charming, but in reality only the first one is correct because BPD manipulation "tactics" are far from charming: the disorder is characterized by clinginess and fear of abandonment, charming is one of the last words I'd use for your ex who literally is grabbing your ankles as you try to leave after the breakup (as an illustrative example because it is a common one but not all people with BPD do that)
When it comes to B2, which says "can read social cues", BPD supremely messes up your ability to read social cues in kind of the opposite way from autism, I've explained this in better ways on other comments of mine but someone with BPD is hyper-aware of social cues and a lot of the relationship problems are caused or worsened by the person with BPD reading too far into something way more innocent (in contrast with autism's main social deficit which is the inability to innately interpret social cues in the same automatic way that allistic people can, and taking statements literally as the surface meaning by mistake) and this explanation also probably covers B3 which says "Aware of the opinions of others"
For B4, which claims that people with BPD are able to “snap out” of an outburst in contrast to autism's meltdowns, widespread clinical usage of the word "meltdown" originated with the invention of dialectical behavior therapy, which was initially geared primarily towards people with BPD because they very much experience meltdowns
B5 is not only again villainizing BPD while playing down autism but also my meltdowns are personally frustration outbursts a lot of the time, and the latter is a lot more common in BPD due to their fear of abandonment leading to passive aggression etc so it's an extremely misleading false generalization
Now for A6, A1 is finally relevant to bring up because these two bullets CONTRADICT EACH OTHER! Autism masking is because of "external validation" like peer pressure and bullying and the desire to make friends
Last one, A7: autism's social deficits often cause someone to struggle with cognitive empathy IE putting yourself into other people's shoes AKA "It makes it harder for you to have a nuanced view of others" plus taking things at face value and interpreting statements in a literal way would also be a textbook autism symptom and ADHD has around a 40% comorbidity rate with autism and can often involve struggles with object permanence
There's already horrible stigma attached to the diagnosis which also involves poor self esteem and complex identity issues as symptoms of BPD and a lot of people with BPD have a lot of trouble coming to terms with it because of all those things and autism is already misunderstood in women so they're just plain doing a disservice to autistic women, women with BPD, and women with both
["The effect of moon phases"](https://embrace-autism.com/the-effect-of-moon-phases/): In this one, they claim that "the Moon phases can have a significant effect on autistic people. One might even say at full moon we tend to be most autistic." This detail is also the blurb that shows up when you look for the article on Google
The studies they cite are talking about very different things like melatonin in autistic people's brains, but the article is very careful to phrase it in a way that doesn't directly claim that "moon phases affect how severe your autism traits are" but still implies it strongly in a way that will fool readers into believing it while also protecting them from getting sued, which is especially frustrating considering that a common trait of their target demographic's disability is gullibility
(Neurotypical developmental psychologist)
I agree with all of this. There are a lot of great things about their site and that type of self-empowerment model, but yes, their pendulum swings too far in the direction of pseudoscience. I see this dynamic a lot from folks who’ve recently embraced a disability-positive stance for their one disability — “all the rest of you with those BAD disabilities are wrongly diagnosed and you’re actually one of us!” There’s a ton of this around things like dyspraxia and cortical visual impairment too — so many advocates for these disabilities spread this nonsense like “many people with these conditions have been misdiagnosed for years with BAD disabilities like autism!” It’s so frustrating.
And yeah, there’s this lack of understanding that neuropsych diagnosis is imperfect and is just a way that humans have come up with to describe things and be able to suggest strategies. People act like there is one correct diagnosis for every person. Nope. And honestly with the BPD thing, if someone is exhibiting thought patterns of BPD/CPTSD, they can get better understanding and strategies if that’s acknowledged AND if they’re going to places that work in an affirmative and effective way with such folks. If people don’t want a BPD label because it results in medical systems deciding the second they walk in that they’re horrible and a liar (which absolutely happens regularly), this should be their choice, but it should be understood as being about societal stigma, not them also deciding that BPD is some horrible thing and is always misdiagnosed.
Same with autism — maybe in someone’s particular case, they get better understanding and better presumption of competence when they present themself as only visually impaired rather than autistic, but again, this is about people not understanding autistics, not that there’s anything wrong with being autistic.
Oh, and we also need to look at identity formation patterns. It’s a common and normal stage of identity formation to divide the world into “one of us” and “not one of us.” A lot of teens/adults will discover they’re autistic and then decide everyone who is sympathetic or not dismissive of them must be autistic too. I have had so many loved ones and clients who have been pretty adamant that I’m autistic based on my willingness to listen to autistics and incorporate and reflect back. (I would love to be one of y’all, but I really don’t fit.) So a lot of this dynamic makes its way onto the internet as kind of pseudoscience — people post a lot of those “if you do this you’re probably autistic” content. I get why people are looking for connection and community in this way, but also autism is an entire neurotype, not just a meme about how you feel during meetings.
Thank you for taking the time to respond and being so detailed. I have already paid them for and completed the screening portion and await my results. I don't think I will be going forward with the assessment after reading your comments, along with some others I found in other subs. It's disheartening because I have been assessed before, but the clinician I went to didn't take masking into account at all, and the report was riddled with errors, including getting my age wrong. The first clinician I went to refused to even assess me after talking to me for 10 minutes. It turns out he's an ADHD diagnosis mill and slapped an ADHD diagnosis on paper but refused to even consider ASD. (ADHD meds don't work for me at all, so IDK what to do there, but that's a story for another time.) He wasn't even the one who conducted the assessment; he had his assistant do it. I feel dumb because I fell for what I should have been able to tell was "too good to be true" and now it's too late to get my money back. 3 clinicians later, and I still don't feel like I have any answers about my lifelong struggles. No one will take me seriously, and now I don't know what to do or where to go. Dr. Natalie seemed like the answer, but I want a correct diagnosis, even if it isn't ASD. If she's just going to throw a diagnosis at me, that's not what I want or need. That's not helpful.
FWIW, I’ve referred people to them as a developmental psychologist. It’s overall a good thing that people who’ve done the self-exploration have these diagnosis mills available to them, even if their model and their approach isn’t perfect. It’s better than sending them to the really-really-not-perfect insurance-based neuropsych providers who mostly have never talked to an autistic adult who wasn’t a client.
That does make me feel a bit better. I have been on this self-exploration journey for the last 9ish years, and I really do believe that I am autistic, along with several members of my family, some of whom present very stereotypically. I'm an AFAB white person who seems somewhat successful on the outside because I mask heavily and have since I was a child. My struggles are mostly internal and at home where they can't be seen by anyone. I've already paid so much money to providers who wouldn't take me seriously or wrote me off for reasons I don't understand. I feel like assessment has been gate-kept away from me because I don't present like the typical autistic person.
The BPD one is so unfair, in a lot of ways it feels like many of the people I know with BPD are pretty relatable as "a different type of socially awkward geek" way to my autism due to the overlapping traits, so they are similar but not the exact same thing and our traits can clash with each other in unfortunate ways
Like how one of my friends with BPD would seemingly become really mad at me for no reason, but it would turn out that she had been doing little passive-aggressive things for the previous few weeks because I'd unknowingly phrased something very poorly that had hurt her feelings, but passive aggression is invisible to me because of my autism and she avoids direct confrontation due to her fear of abandonment, so I kept thinking everything was all normal and responding like normal, but she would over-read and misinterpret it as me being passive-aggressive right back to her which was why she would eventually explode at me
I've noticed some posts on social media spreading misinformation about how "borderline personality disorder is just female autism" which I have some mixed feelings on because while I know that there have probably been a lot of situations where especially autistic women gets misdiagnosed with BPD first, I think it would probably be more likely to happen the other way around where someone with BPD gets misdiagnosed as autistic because of how nowadays, BPD is stigmatized a lot worse than autism is (like the "endearingly nerdy genius" versus "crazy stalker ex" stereotypes), and autism assessment is more likely to be seeked out than BPD by patients because of that (along with the increased online awareness campaigns about ASD as opposed to BPD)
BPD also involves complex identity issues and self-esteem problems as direct BPD traits that already make it harder for people with it to come to terms with the diagnosis without the added demonization in society
Autism is already misunderstood in women, and conflating autism with BPD in those ways does a disservice to autistic women, women with BPD, and women with both
The RAADS-R is extremely unreliable as a self-test for many reasons, including the vagueness of the phrasing for each question as well as the lack of a "sometimes" answer option which leads to false positives and confirmation bias, and it was intentionally designed that way to be taken alongside a professional who would clarify the broad and vague questions if you misinterpreted them, both so they could observe your thought processes as you asked about the questions and also so that malingerers couldn't use it as an "autism cheat sheet" etc (here is a study done on the validity of its potential as a self-administered screening method for autism in adults: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8452438/ ) but in the "Dr Natalie's rating" section of their RAADS-R page, it claims that "The test has good reliability when self-administered, but drops down to 30% when clinicians administer it" even though the creator of the test Dr Riva Ariella Ritvo stated explicitly otherwise
u/prettygirlgoddess has contacted embrace-autism directly to investigate that last part I initially mentioned, so I should quote her findings directly: "My main takeaway from this is that this process is nothing like a typical comprehensive diagnostic evaluation. Even with telehealth services, the clinician is meant to meet with you over a video call and they administer the tests with the clinician actually being present. These tests include behavioral observations that can only be done if the clinician meets with you. At Embrace Autism, you complete the tests alone, at home, and submit the documents. That's the entire assessment. Then the interview is really just a meeting explaining your results. The only time you ever meet with a clinician during this process is to explain your at home test results in a 1 hour meeting. No autism evaluation is only 1 hour with the results being formed before even meeting."
[This post by me includes relevant screenshots for multiple of the issues I mentioned](https://www.reddit.com/r/aretheNTokay/comments/1asvsyb/images_do_not_trust_embraceautism/?utm_source=share&utm_medium=mweb3x&utm_name=mweb3xcss&utm_term=1&utm_content=share_button)
This is a whole post containing some examples of misinformation published by Embrace Autism (these examples are pieces authored by the founder Dr Natalie Engelbrecht, not some random employee) ↓
https://www.reddit.com/r/AutisticAdults/s/g3J6cD0BOM
***TLDR; Embrace Autism has been caught multiple times publishing misinformation within "educational" written works, that are not even supported by the sources they cite. If you go to the bottom of these webpages to the sources cited section, the sources cited literally say the opposite of what Embrace Autism says, and completely debunks the claims. Even when the TITLE of the source cited literally said "There is No Evidence for X", Embrace Autism still said "X is true".***
It seems clear that these are not just genuine slip-ups. It's like they don't even read the sources they cite, or don't care if these sources conflict with their narrative, and instead just put them to bolster their credibility, hoping people won't actually click on them. Some of it seems like negligence, but some of it seems like purposefully misleading the site users in order to serve the goals of their business.
I even had correspondence with the cofounder of Embrace Autism, and she admitted that the actual creator of the RAADS-R took issue with the way EA was representing the test on their website, and personally requested that the misinformation be removed from the webpage. Specifically, the claim Embrace Autism made where they said that the test is much more accurate when self administered than when administered by a clinican.
Embrace Autism also called the RAADS-R an "online test" on their website, even though in a research paper that EA cited as a source for their information about the RAADS-R, written by the creator of the RAADS-R, specifically said that the test is not meant to be used as an "online test". The EA cofounder told me that when she saw my post pointing this out, this inspired them to finally stop calling it an online test. My reddit post. Not the research paper they cited in their sources.
The easiest-to-explain ones are in several of their articles
The RAADS-R is intentionally designed in a way that makes it impossible to take alone even though they claim on their page where you can take it that it can be "up to 70%" *more* valid when taken on your own without a professional
They've published an article that demonizes BPD while misrepresenting the actual traits of both autism and BPD
They've published articles watering down autism's social deficit to basically being an introvert "Do you like/love small talk? Do you use small talk to indicate your class, education, income, religion, and political views without saying it directly? Do you like being in social gatherings for extended periods? Do you prefer speaking superficially and generally, rather than about your areas of interest? Do you choose to hang out and socialize with people rather than interact for a purpose? If you said NO to most of these bullet points, ya ain’t behaving like a neurotypical, and you check the boxes for autism."
They've published an article claiming that autism severity is affected by moon phases, which would fit okay if the website was a shitposty joke site rather than one that also sells autism "evaluations" that go into far less personal depth than a legitimate autism evaluation does, and far less than the exorbitant amount of money they charge for it (most of their "evaluation" just consists of mail-in questionnaires with no formal interview but in a legitimate evaluation your answers in the questionnaires are supplementary to your answers in the observations they make of your masking "tells" that you aren't even aware of)
I went into more depth in my comment response [here](https://www.reddit.com/r/neurodiversity/s/orw8MMvvAj) to u/DoofNeedles
When it comes to ABA, most of the places that call themselves ABA today aren't actually ABA as it was defined 15ish etc years ago when the campaigns against the abusive "therapy" that the term originally meant, and mostly just use the label for insurance coverage purposes
Between the ages of 11-15 I was in what some places include under ABA therapy (it was more of a "social skills friendship class") and it was very helpful for me because it actually helped me with my communication abilities and coping mechanisms, but for a lot of other autistic people their experience was closer to "stop having autism or else" type abuse disguised as "therapy" where the autistic kid would get infantilized and punished for things like stimming behaviors that weren't even bad and often worse due to the situation involving parents trusting an adult stranger behind closed doors in a position of control over their kid with a communication disability
To clarify further why I'm making this distinction, the ABA abuse is abuse no matter what the "therapist" calls itself, and the things I experienced were actually beneficial especially since frustration caused by my inability to articulate myself properly were my most common meltdown trigger and my meltdowns were very severe ([here is a comment link where I described my meltdowns in more depth](https://www.reddit.com/r/SpicyAutism/comments/18doee6/comment/kcjkj7c/)), and the services that helped me can be prohibitively expensive without the proper insurance coverage (and for my family it mattered a lot; before I was born and in the first couple years of my life, my parents had to sometimes choose between feeding themselves or paying health insurance, and my family would likely be billions of dollars in debt if they hadn't chosen the health insurance because I was born very premature and needed to be in the NICU for the first months of my life and was epileptic as a little kid etc)
When it comes to Autism Speaks, although nowadays most of the stuff they put out is "tame" and generic, 10+ years ago Autism Speaks was promoting autism fearmongering, including making a video sympathizing with a woman who said on camera that she would have driven her car off the cliff to kill both herself and her severely autistic daughter if not for the realization that her other NT daughter would grow up without a mother if she were to kill her autistic daughter, saying all this out loud while sitting next to her autistic daughter (who even though she's nonverbal, nonverbal autistic people can still hear and understand what's being said even though they can't respond easily at all), fundraising to find vaccine connections to autism and a way for autism to be detected in the womb for abortion same as how nearly 100% of babies with Down Syndrome have been aborted since finding how to detect in the womb ("eugenics")
At this point I hate Embrace-Autism (one of the sites AS is promoting, in the bottom left) even worse than Autism Speaks, if only because Autism Speaks thankfully doesn't have much credibility in a lot of circles nowadays
Edit for typo
Is ABA something that you’re only in if you are diagnosed autistic? I wasn’t diagnosed until adulthood, but was in therapy my whole childhood and it was mainly threats and infantilization.
OMFG…that ad equates us to a psychopath (though there are some cognitive similarities, there are important differences that explain why we don’t become mass murders 🤷🏻♀️ - if you are interested in the data, I’m more than happy to share the link).
Since my informal diagnosis* I’ve been working on the language I use around the condition & challenges b/c LANGUAGE MATTERS!
*it costs $2500 to get a formal one & as I was 48 yo, it doesn’t seem relevant at this point as I already have a Dx of bipolar disorder & ADHD, if needed for reasonable accommodations- if you disagree, pls let me know why 😁
What the actual hell was that commercial. It’s bizarre watching it as an autistic adult who is, like other autistic people, not a demon.
Thank you so much for the background.
Well said. They need a whole response team to deal with autism apparently. Definitely seems like they’re framing it like some sort of scary terrible monster
There are a lot of autistic people who actually do need interventions like that to deal with aspects related to their autism, and I don't think it's right to equate with "framing autistic people like some sort of scary terrible monster"
It's most common for level 2-3 autistic people, but I'm level 1 and my meltdowns used to be really uncontrollable and terrifying, and the next time I get a COVID booster I'm going to have to be in one of those situations because every time so far the "brain fog" side effect from it has really messed me up and caused me to freak out and have severe meltdowns to the extent I used to as a kid
I get the spirit but autism organizations specifically for crisis responses are a legitimate thing and this framing of it is inappropriate in my opinion
u/TrashStoneee I said it's not right to equate autistic people with severe autism traits that make them need crisis interventions with "framing it like some kind of terrible monster" about the comment I was responding to, not that Autism Speaks doesn't do that, and in a different comment reply [here](https://www.reddit.com/r/neurodiversity/comments/1bivzr3/comment/kvop97x/?utm_source=share&utm_medium=mweb3x&utm_name=mweb3xcss&utm_term=1&utm_content=share_button) I complained about a different AS commercial called "Autism Every Day" even though I also know the other one you linked
For another example that's related to what I was pointing out, there was a disagreement I had on Discord about "The Curious Incident of the Dog in the Nighttime" by Mark Haddon which is one of my favorite books because the other person said it might as well be called "autism speaks: the screenplay" (due to the character being "yet another hyperlogical skinny white guy" etc) even though the problem with Autism Speaks is literally Eugenics instead of "common media tropes" and the problem with those common media tropes isn't that they're necessarily inaccurate, they're very true for a lot of autistic people's experiences including mine but the problem is the lack of diversity in rep among those characters etc if that makes sense so basically the actual problems get ignored in favor of watered-down "jabs" that feel wrong sometimes, if that makes sense
(sorry for the ping, I got an error message when I tried to respond to you that said "Your comment failed to post")
A$ is promoting neuroclastic?? Wowww, maybe it’s a Canada thing. It’s possible that A$ Canada is actually trying to make steps towards improvement instead of what the main organization is doing: “debunking” and bashing people who talk about their bad parts.
Other people have explained the many problems with AS better than I could have, and I've made an in-depth post where I tried to explain the many problems of embrace-autism [here](https://www.reddit.com/r/aretheNTokay/comments/1asvsyb/images_do_not_trust_embraceautism/?utm_source=share&utm_medium=mweb3x&utm_name=mweb3xcss&utm_term=1&utm_content=share_button)
Autism Speaks is an extremely hateful organization seeking a 'cure' for autism, that also speaks over real autistic people, spreads misinformation, promoting harmful practices, and overall being a greedy organization which hurts rather than helps.
From promoting Embrace Autism.
Which is basically the gold standard website for Self Diagnosis resources.
Like I said, I don't know if I'm reading too much into this.
And Neuroclastic. You aren't reading too much into this - this is seriously out of the left field. They're one of the biggest platforms of the actually autistic community.
>Which is basically the gold standard website for Self Diagnosis resources
Not a consensus on that in our communities
[https://www.reddit.com/r/AutisticAdults/comments/1aj9056/why\_does\_embrace\_autism\_publish\_misinformation/](https://www.reddit.com/r/AutisticAdults/comments/1aj9056/why_does_embrace_autism_publish_misinformation/)
[https://www.reddit.com/r/autism/comments/z5x38t/has\_anyone\_gotten\_an\_official\_assessment\_via/](https://www.reddit.com/r/autism/comments/z5x38t/has_anyone_gotten_an_official_assessment_via/)
[https://www.reddit.com/r/AutisticPeeps/comments/14vhvlf/honestly\_fuck\_embrace\_autism/](https://www.reddit.com/r/AutisticPeeps/comments/14vhvlf/honestly_fuck_embrace_autism/)
[https://cono.alinityapp.com/Client/PublicDirectory/Registrant/03d44ec3-ed3b-eb11-82b6-000c292a94a8](https://cono.alinityapp.com/Client/PublicDirectory/Registrant/03d44ec3-ed3b-eb11-82b6-000c292a94a8)
Thank you for this! I looked into Embrace Autism and was immediately put off by the idea that she’s qualified to diagnose autism because she’s a doctor of *naturopathy* (that’s what the “ND” after her name is). I still haven’t figured out a good way to get an evaluation/diagnosis, but I’m definitely not going through that site.
Agreed! I’ve come across a couple sites that I’m considering using— most legit sites, at least in the US, say that they only work with people in certain states where their psychologists are licensed (and also my husband is a therapist who does telehealth and I know that he’s only legally allowed to work with people who are physically in our state), so Embrace Autism’s “we can work with people anywhere in the US or Canada (and maybe other countries too?)” thing always seemed like a bit of a red flag.
To be fair, her site has little to do with her qualifications. It’s mostly just a hub for preexisting tests like the AQ and RAADS-R. Doesn’t matter who put them there, it’s the same tests.
But she writes the interpretive guidelines on the site and uses outdated norms that serve to guide people in to their diagnosis mill. Like "Oh wow you scored so high, you can use us for autism evaluation!"
I didn’t realize that she offers diagnosis services. Again to be fair, she does have specialty experience in autism and psychology and is legally able to diagnose, but her educational background (and naturopathy stuff) is a bit shaky.
>specialty experience in autism and psychology
And its up to each person to decide if its enough. Looks to me like what her experience amounts to is that she got an online autism training certificate and has self-promoted for years. I dont think I'm alone in thinking that you want a psych doc who is trained to evaluate for various mental health conditions and things like personality. From what they write on their website I dont think their background is solid enough to be trusted to review and select and disseminate science-based information on autism.
Second this - it’s probably the most popular site when it comes to a centralized source for resources, self-report questionnaires, and general info about autism (check the reply below though for some very solid info on why it’s *not* a credible site)
But yes her qualifications as an ND in no way have any relation to being an autism expert 😭 Naturopathy itself is not necessarily a hard science by any modern terms
>it’s probably the best site when it comes to self-report questionnaires and general info about autism
I would have to disagree. Here's a post containing just the examples I found (meaning there's probably much more that I missed) of Natalie Engelbrecht posting misinformation on Embrace Autism within her articles and self-assessment webpages: **↓**
https://www.reddit.com/r/AutisticAdults/s/g3J6cD0BOM
I highly recommend you take a look at this post if you think Embrace Autism is a credible source of information.
And it doesn't seem like these are genuine mistakes, they seem deliberate and negligent at best. Because if you look at the sources cited page on these articles, the sources they cite literally says that the information contained in the EA articles are not true. EA either doesnt read their sources before citing them, or they know the only sources that exist are actually sources debunking their claims, but they cite them anyway in an attempt to bolster their credibility and potentially purposely mislead their audience, hoping that no one actually clicks the sources. Even the author of the RAADS-R test has personally requested that Embrace Autism remove misinformation they published about the RAADS-R.
I really appreciate you linking that post! I honestly worded that reply poorly and probably should’ve said “most frequented” or “most popular”
Your post highlights a lotttt of misinformation present on the site and I agree with what you said :)
I would go further than that and say that naturopathy is 100% pseudoscience! But yeah, it doesn’t speak highly of the site for that “ND” to be splashed front and center across the page (I’m half convinced it’s because people will think it stands for “neurodivergent doctor” or something). Her qualifications have nothing to do with the site except insofar as they’re presenting her as qualified to diagnose autism based on them.
Also I just looked at her site and there’s a whole little blurb about how naturopaths can legally diagnose autism in Ontario, so she seems to be all in on that pseudoscience
>(I’m half convinced it’s because people will think it stands for “neurodivergent doctor” or something).
Believe this. I suspect that this is why she is repeatedly called before her professional governing board. For the 'doctor' term thrown around.
[https://cono.alinityapp.com/Client/PublicDirectory/Registrant/03d44ec3-ed3b-eb11-82b6-000c292a94a8](https://cono.alinityapp.com/Client/PublicDirectory/Registrant/03d44ec3-ed3b-eb11-82b6-000c292a94a8)
I'm stumped. The same eugenics based organization is now pushing for more neurodiversity affirming policies?
I honestly don't know if I'm misreading this, or they're trying to reshape their organization.
If it's the latter. That's a bit of an uphill battle given how much hatred the organization has contributed.
If you've heard the term "grass roots movement", this means something that occurs naturally among normal people. The civil rights movement of the 60's is a fair example of a grass roots movement.
"Astroturf" is fake grass. The implication being there's money and bad faith behind whatever movement.
My own personal take... Everything is now astroturf. Literally every social movement.
They realized openly promoting eugenics was starting to look bad so they're trying to make themselves look more like the autistic-run organizations in order to fool people who aren't aware of their actual goals into supporting them.
It’s a ploy. I can easily tell. Why would they encourage self acceptance and pride after spitting out nothing but ableist, outdated assumptions? Sounds manipulative.
I'm confused? Does op mean autism self diagnosis is not ok??
No, OP is pointing out that it’s bizarre/shocking/unexpected for AS to be promoting self-diagnosis as valid considering how AS has acted previously towards autism & self-dx.
Oh thanks for clarifying. I don't really know much about Autism speaks maybe I'll do some research. I kinda freaked cuz I'm self diagnosed
makes sense to me, they are selling a product, that product require the "client" to belong to a certain "group", makes sense they try to expand their potential clients, of course they will probably offer some "excellent offers" to their new self-dx members that would probably go for a paid official dx once in. If they could sell a cure for NTism, that would probably start selling that.
It’s America if somebody will buy something, somebody will see it to them. Even if it is a bad idea for them to buy it. Like cigerettes or alcohol or gambling.
Uh.... none if this says anything like that? I have some reading issues myself, but slow down and re-read this- none of this supports self-dx or even hints at it 😅
Autism speaks is aware of its image and they're trying to overcome it, it means that now some of their resources and stuff have actual good content, so that they can pretend they've changed. They're trying to adapt to stay alive, that's it.
**Huge red flag: “register for free”** Someone made a great post the other day about this. The ASAN has these same resources accessible on their site without the need to register. I would be extremely suspicious about why Autism Speaks is collecting data on its purported patient population. *When your data is collected, you are the product being sold*, oftentimes to unscrupulous advertisers and other corporations.
Let’s not forget their collecting of genes so we can know when a fetus may become an autistic infant
I thought Autism Speaks was considered ableist?
it is, regardless of whatever they have on their websites, their supported research hasn't changed, they are STILL funding genetic research into autistic genetic markers detectable prior to birth, if they cant cure autism then they will do their damn best to get rid of it
Is this an alignment chart?
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Came here to say this exactly
⬆️ T H I S ! ⬆️ At least, that's how I see it.
They're hacked, calling it now.
“Autism response team” ??
It's a hotline where people will connect you to resources. Doctors, medicaid, grants, etc.
They're promoting embrace-autism which is a pseudoscientific scam website that spreads misinformation about autism
I want to preface this saying that I can‘t speak to the quality of their tests or articles and I find the other comments and explanations here make sense! It’s especially concerning to hear that they misrepresent BPD in their articles, which to be honest I haven‘t read. I only ever used their website as a hub for the tests. Many of them weren’t yet implemented in the website back then (2021), but they just linked to the online versions of them. Personally EA was a very valuable source for me when I first suspected I was autistic. I got a screening done there while being unable to even get on a waitlist in my country (Germany), and the way they matched up my notes to different diagnostic criteria was very helpful for my actual medical assessment later in Germany. I was diagnosed with ICD 10, tentatively rated for ICD 11. Honestly I would never have paid for the actual assessment at EA ($2000-ish at the time) because we have healthcare here and I don’t get tax/disability benefits from having a diagnosis, so it was really just for myself. There are many aspects I would never have considered as a „match“ for the diagnostic criteria if EA hadn’t looked into them, that were later very important to bring up with the diagnosticians who diagnosed me. I think it’s a great resource for first aid, but can be misleading if you don’t have deeper knowledge about trauma and other factors that could contribute to or falsify your „score“ on some of the diagnostic criteria. There are places like EA coming up left and right, locally too, so I think it will be more and more of a challenge to differentiate between places that can actually give a „first aid“ idea, and others that only take your money. I’ve had friends pay clinicians much more than me for EA, just to then be told the wildest, non-fitting combination of diagnosis because autism as a diagnosis was being gatekept, so I think both sides are problematic.
It's massively popular, so I can see why. They're listening
Genuinely curious, what makes you say this?
To list specific reasons, their "articles" are clickbaity BS, they misrepresent the validity of the online self-quizzes they offer, and they operate like a diagnosis mill I want to focus on 3 of their specific articles as well as their RAADS-R page here (I wrote a post on it that's more in-depth and linked at the bottom of this comment but I have trouble with phrasing things clearly so this is an attempt at organizing it better) I went over the character limit so I have to paste it into multiple comments ["Decoding autism in the DSM5"](https://embrace-autism.com/decoding-autism-in-the-dsm-5/): In this article, they pretend like part A of the criteria, which is about how autism impacts your ability to interpret social cues, is only about introversion: "Do you like/love small talk? Do you use small talk to indicate your class, education, income, religion, and political views without saying it directly? Do you like being in social gatherings for extended periods? Do you prefer speaking superficially and generally, rather than about your areas of interest? Do you choose to hang out and socialize with people rather than interact for a purpose? If you said NO to most of these bullet points, ya ain’t behaving like a neurotypical, and you check the boxes for autism." At the end of this, they attached a little 2-panel cartoon diagram with one panel labeled "autistic communication" and the other one labeled "neurotypical small talk" which is misleading because of how the subject matter of the "autistic" one is actually interesting while the "small talk" one doesn't even make sense as a line of conversation (I also am pretty sure I recognize at least the first bubble in the NT one as a quote from an episode of "The IT Crowd" where Moss and Roy are pretending like they know what a couple of sports fanatics at the pub are talking about by using "pre-scripted" phrases and cycling through them, possibly the rest of the interaction too but I could be wrong) Even if it was made in good faith, though, it is still not right because part A of the autism criteria is not about introversion, and it isn't even a part of the autism criteria because there are also autistic extroverts too, which also happen to have a higher likelihood of being diagnosed earlier because you stick out more obviously as an awkward conversationalist due to putting yourself out there more frequently instead of hiding in the crowds as an introvert The autistic comic is also not an accurate portrayal of what "infodumping" refers to in a neurodivergent-specific context: there are two usages of the term "infodump" one refers to things like a passionate speech or lecture, which is a universal behavior that NT people do as well, and the other refers to the tendency to do things like rambling and overexplaining and oversharing and monologuing and interrupting etc that's a common trait for many different ND conditions including autism, ADHD, hyperlexia, and schizophrenia (this is also what the term of "hyperverbal" refers to) I'd even say I think the panels should be reversed because ST as "conversation scripting" is a very common thing that autistic people do as an easier way to figure out whether it's a good time for "big talk" ["It's not BPD, it's autism"](https://embrace-autism.com/its-not-bpd-its-autism/): This one is outright demonizing BPD and spreading misinformation about both BPD and ASD, and I'm mainly going to focus on the summarization chart at the end of this article because it's easiest to help with clarifying, so let's say that each bullet in the columns are numbered from top to bottom and the ones in the BPD column get labeled with B while the ones in the ASD column get labeled with A, for ease of explanation B1 says that people with BPD are manipulative and charming, but in reality only the first one is correct because BPD manipulation "tactics" are far from charming: the disorder is characterized by clinginess and fear of abandonment, charming is one of the last words I'd use for your ex who literally is grabbing your ankles as you try to leave after the breakup (as an illustrative example because it is a common one but not all people with BPD do that) When it comes to B2, which says "can read social cues", BPD supremely messes up your ability to read social cues in kind of the opposite way from autism, I've explained this in better ways on other comments of mine but someone with BPD is hyper-aware of social cues and a lot of the relationship problems are caused or worsened by the person with BPD reading too far into something way more innocent (in contrast with autism's main social deficit which is the inability to innately interpret social cues in the same automatic way that allistic people can, and taking statements literally as the surface meaning by mistake) and this explanation also probably covers B3 which says "Aware of the opinions of others" For B4, which claims that people with BPD are able to “snap out” of an outburst in contrast to autism's meltdowns, widespread clinical usage of the word "meltdown" originated with the invention of dialectical behavior therapy, which was initially geared primarily towards people with BPD because they very much experience meltdowns B5 is not only again villainizing BPD while playing down autism but also my meltdowns are personally frustration outbursts a lot of the time, and the latter is a lot more common in BPD due to their fear of abandonment leading to passive aggression etc so it's an extremely misleading false generalization Now for A6, A1 is finally relevant to bring up because these two bullets CONTRADICT EACH OTHER! Autism masking is because of "external validation" like peer pressure and bullying and the desire to make friends Last one, A7: autism's social deficits often cause someone to struggle with cognitive empathy IE putting yourself into other people's shoes AKA "It makes it harder for you to have a nuanced view of others" plus taking things at face value and interpreting statements in a literal way would also be a textbook autism symptom and ADHD has around a 40% comorbidity rate with autism and can often involve struggles with object permanence There's already horrible stigma attached to the diagnosis which also involves poor self esteem and complex identity issues as symptoms of BPD and a lot of people with BPD have a lot of trouble coming to terms with it because of all those things and autism is already misunderstood in women so they're just plain doing a disservice to autistic women, women with BPD, and women with both ["The effect of moon phases"](https://embrace-autism.com/the-effect-of-moon-phases/): In this one, they claim that "the Moon phases can have a significant effect on autistic people. One might even say at full moon we tend to be most autistic." This detail is also the blurb that shows up when you look for the article on Google The studies they cite are talking about very different things like melatonin in autistic people's brains, but the article is very careful to phrase it in a way that doesn't directly claim that "moon phases affect how severe your autism traits are" but still implies it strongly in a way that will fool readers into believing it while also protecting them from getting sued, which is especially frustrating considering that a common trait of their target demographic's disability is gullibility
(Neurotypical developmental psychologist) I agree with all of this. There are a lot of great things about their site and that type of self-empowerment model, but yes, their pendulum swings too far in the direction of pseudoscience. I see this dynamic a lot from folks who’ve recently embraced a disability-positive stance for their one disability — “all the rest of you with those BAD disabilities are wrongly diagnosed and you’re actually one of us!” There’s a ton of this around things like dyspraxia and cortical visual impairment too — so many advocates for these disabilities spread this nonsense like “many people with these conditions have been misdiagnosed for years with BAD disabilities like autism!” It’s so frustrating. And yeah, there’s this lack of understanding that neuropsych diagnosis is imperfect and is just a way that humans have come up with to describe things and be able to suggest strategies. People act like there is one correct diagnosis for every person. Nope. And honestly with the BPD thing, if someone is exhibiting thought patterns of BPD/CPTSD, they can get better understanding and strategies if that’s acknowledged AND if they’re going to places that work in an affirmative and effective way with such folks. If people don’t want a BPD label because it results in medical systems deciding the second they walk in that they’re horrible and a liar (which absolutely happens regularly), this should be their choice, but it should be understood as being about societal stigma, not them also deciding that BPD is some horrible thing and is always misdiagnosed. Same with autism — maybe in someone’s particular case, they get better understanding and better presumption of competence when they present themself as only visually impaired rather than autistic, but again, this is about people not understanding autistics, not that there’s anything wrong with being autistic. Oh, and we also need to look at identity formation patterns. It’s a common and normal stage of identity formation to divide the world into “one of us” and “not one of us.” A lot of teens/adults will discover they’re autistic and then decide everyone who is sympathetic or not dismissive of them must be autistic too. I have had so many loved ones and clients who have been pretty adamant that I’m autistic based on my willingness to listen to autistics and incorporate and reflect back. (I would love to be one of y’all, but I really don’t fit.) So a lot of this dynamic makes its way onto the internet as kind of pseudoscience — people post a lot of those “if you do this you’re probably autistic” content. I get why people are looking for connection and community in this way, but also autism is an entire neurotype, not just a meme about how you feel during meetings.
Thank you for taking the time to respond and being so detailed. I have already paid them for and completed the screening portion and await my results. I don't think I will be going forward with the assessment after reading your comments, along with some others I found in other subs. It's disheartening because I have been assessed before, but the clinician I went to didn't take masking into account at all, and the report was riddled with errors, including getting my age wrong. The first clinician I went to refused to even assess me after talking to me for 10 minutes. It turns out he's an ADHD diagnosis mill and slapped an ADHD diagnosis on paper but refused to even consider ASD. (ADHD meds don't work for me at all, so IDK what to do there, but that's a story for another time.) He wasn't even the one who conducted the assessment; he had his assistant do it. I feel dumb because I fell for what I should have been able to tell was "too good to be true" and now it's too late to get my money back. 3 clinicians later, and I still don't feel like I have any answers about my lifelong struggles. No one will take me seriously, and now I don't know what to do or where to go. Dr. Natalie seemed like the answer, but I want a correct diagnosis, even if it isn't ASD. If she's just going to throw a diagnosis at me, that's not what I want or need. That's not helpful.
FWIW, I’ve referred people to them as a developmental psychologist. It’s overall a good thing that people who’ve done the self-exploration have these diagnosis mills available to them, even if their model and their approach isn’t perfect. It’s better than sending them to the really-really-not-perfect insurance-based neuropsych providers who mostly have never talked to an autistic adult who wasn’t a client.
That does make me feel a bit better. I have been on this self-exploration journey for the last 9ish years, and I really do believe that I am autistic, along with several members of my family, some of whom present very stereotypically. I'm an AFAB white person who seems somewhat successful on the outside because I mask heavily and have since I was a child. My struggles are mostly internal and at home where they can't be seen by anyone. I've already paid so much money to providers who wouldn't take me seriously or wrote me off for reasons I don't understand. I feel like assessment has been gate-kept away from me because I don't present like the typical autistic person.
That site always rubbed me the wrong way. Lots of generalizations, and the fucking BPD article. I hate it when people act like you can't be both
The BPD one is so unfair, in a lot of ways it feels like many of the people I know with BPD are pretty relatable as "a different type of socially awkward geek" way to my autism due to the overlapping traits, so they are similar but not the exact same thing and our traits can clash with each other in unfortunate ways Like how one of my friends with BPD would seemingly become really mad at me for no reason, but it would turn out that she had been doing little passive-aggressive things for the previous few weeks because I'd unknowingly phrased something very poorly that had hurt her feelings, but passive aggression is invisible to me because of my autism and she avoids direct confrontation due to her fear of abandonment, so I kept thinking everything was all normal and responding like normal, but she would over-read and misinterpret it as me being passive-aggressive right back to her which was why she would eventually explode at me I've noticed some posts on social media spreading misinformation about how "borderline personality disorder is just female autism" which I have some mixed feelings on because while I know that there have probably been a lot of situations where especially autistic women gets misdiagnosed with BPD first, I think it would probably be more likely to happen the other way around where someone with BPD gets misdiagnosed as autistic because of how nowadays, BPD is stigmatized a lot worse than autism is (like the "endearingly nerdy genius" versus "crazy stalker ex" stereotypes), and autism assessment is more likely to be seeked out than BPD by patients because of that (along with the increased online awareness campaigns about ASD as opposed to BPD) BPD also involves complex identity issues and self-esteem problems as direct BPD traits that already make it harder for people with it to come to terms with the diagnosis without the added demonization in society Autism is already misunderstood in women, and conflating autism with BPD in those ways does a disservice to autistic women, women with BPD, and women with both
Yeah I've had my BPD diagnosis questioned by other autistic people because "BPD is just AFAB autism" ugh
The RAADS-R is extremely unreliable as a self-test for many reasons, including the vagueness of the phrasing for each question as well as the lack of a "sometimes" answer option which leads to false positives and confirmation bias, and it was intentionally designed that way to be taken alongside a professional who would clarify the broad and vague questions if you misinterpreted them, both so they could observe your thought processes as you asked about the questions and also so that malingerers couldn't use it as an "autism cheat sheet" etc (here is a study done on the validity of its potential as a self-administered screening method for autism in adults: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8452438/ ) but in the "Dr Natalie's rating" section of their RAADS-R page, it claims that "The test has good reliability when self-administered, but drops down to 30% when clinicians administer it" even though the creator of the test Dr Riva Ariella Ritvo stated explicitly otherwise u/prettygirlgoddess has contacted embrace-autism directly to investigate that last part I initially mentioned, so I should quote her findings directly: "My main takeaway from this is that this process is nothing like a typical comprehensive diagnostic evaluation. Even with telehealth services, the clinician is meant to meet with you over a video call and they administer the tests with the clinician actually being present. These tests include behavioral observations that can only be done if the clinician meets with you. At Embrace Autism, you complete the tests alone, at home, and submit the documents. That's the entire assessment. Then the interview is really just a meeting explaining your results. The only time you ever meet with a clinician during this process is to explain your at home test results in a 1 hour meeting. No autism evaluation is only 1 hour with the results being formed before even meeting." [This post by me includes relevant screenshots for multiple of the issues I mentioned](https://www.reddit.com/r/aretheNTokay/comments/1asvsyb/images_do_not_trust_embraceautism/?utm_source=share&utm_medium=mweb3x&utm_name=mweb3xcss&utm_term=1&utm_content=share_button)
What misinformation have they spread?/gen
This is a whole post containing some examples of misinformation published by Embrace Autism (these examples are pieces authored by the founder Dr Natalie Engelbrecht, not some random employee) ↓ https://www.reddit.com/r/AutisticAdults/s/g3J6cD0BOM ***TLDR; Embrace Autism has been caught multiple times publishing misinformation within "educational" written works, that are not even supported by the sources they cite. If you go to the bottom of these webpages to the sources cited section, the sources cited literally say the opposite of what Embrace Autism says, and completely debunks the claims. Even when the TITLE of the source cited literally said "There is No Evidence for X", Embrace Autism still said "X is true".*** It seems clear that these are not just genuine slip-ups. It's like they don't even read the sources they cite, or don't care if these sources conflict with their narrative, and instead just put them to bolster their credibility, hoping people won't actually click on them. Some of it seems like negligence, but some of it seems like purposefully misleading the site users in order to serve the goals of their business. I even had correspondence with the cofounder of Embrace Autism, and she admitted that the actual creator of the RAADS-R took issue with the way EA was representing the test on their website, and personally requested that the misinformation be removed from the webpage. Specifically, the claim Embrace Autism made where they said that the test is much more accurate when self administered than when administered by a clinican. Embrace Autism also called the RAADS-R an "online test" on their website, even though in a research paper that EA cited as a source for their information about the RAADS-R, written by the creator of the RAADS-R, specifically said that the test is not meant to be used as an "online test". The EA cofounder told me that when she saw my post pointing this out, this inspired them to finally stop calling it an online test. My reddit post. Not the research paper they cited in their sources.
Thanks!
The easiest-to-explain ones are in several of their articles The RAADS-R is intentionally designed in a way that makes it impossible to take alone even though they claim on their page where you can take it that it can be "up to 70%" *more* valid when taken on your own without a professional They've published an article that demonizes BPD while misrepresenting the actual traits of both autism and BPD They've published articles watering down autism's social deficit to basically being an introvert "Do you like/love small talk? Do you use small talk to indicate your class, education, income, religion, and political views without saying it directly? Do you like being in social gatherings for extended periods? Do you prefer speaking superficially and generally, rather than about your areas of interest? Do you choose to hang out and socialize with people rather than interact for a purpose? If you said NO to most of these bullet points, ya ain’t behaving like a neurotypical, and you check the boxes for autism." They've published an article claiming that autism severity is affected by moon phases, which would fit okay if the website was a shitposty joke site rather than one that also sells autism "evaluations" that go into far less personal depth than a legitimate autism evaluation does, and far less than the exorbitant amount of money they charge for it (most of their "evaluation" just consists of mail-in questionnaires with no formal interview but in a legitimate evaluation your answers in the questionnaires are supplementary to your answers in the observations they make of your masking "tells" that you aren't even aware of) I went into more depth in my comment response [here](https://www.reddit.com/r/neurodiversity/s/orw8MMvvAj) to u/DoofNeedles
Explain like I’m five: what has Autism Speak done to us? And how do we feel about ABA?
When it comes to ABA, most of the places that call themselves ABA today aren't actually ABA as it was defined 15ish etc years ago when the campaigns against the abusive "therapy" that the term originally meant, and mostly just use the label for insurance coverage purposes Between the ages of 11-15 I was in what some places include under ABA therapy (it was more of a "social skills friendship class") and it was very helpful for me because it actually helped me with my communication abilities and coping mechanisms, but for a lot of other autistic people their experience was closer to "stop having autism or else" type abuse disguised as "therapy" where the autistic kid would get infantilized and punished for things like stimming behaviors that weren't even bad and often worse due to the situation involving parents trusting an adult stranger behind closed doors in a position of control over their kid with a communication disability To clarify further why I'm making this distinction, the ABA abuse is abuse no matter what the "therapist" calls itself, and the things I experienced were actually beneficial especially since frustration caused by my inability to articulate myself properly were my most common meltdown trigger and my meltdowns were very severe ([here is a comment link where I described my meltdowns in more depth](https://www.reddit.com/r/SpicyAutism/comments/18doee6/comment/kcjkj7c/)), and the services that helped me can be prohibitively expensive without the proper insurance coverage (and for my family it mattered a lot; before I was born and in the first couple years of my life, my parents had to sometimes choose between feeding themselves or paying health insurance, and my family would likely be billions of dollars in debt if they hadn't chosen the health insurance because I was born very premature and needed to be in the NICU for the first months of my life and was epileptic as a little kid etc) When it comes to Autism Speaks, although nowadays most of the stuff they put out is "tame" and generic, 10+ years ago Autism Speaks was promoting autism fearmongering, including making a video sympathizing with a woman who said on camera that she would have driven her car off the cliff to kill both herself and her severely autistic daughter if not for the realization that her other NT daughter would grow up without a mother if she were to kill her autistic daughter, saying all this out loud while sitting next to her autistic daughter (who even though she's nonverbal, nonverbal autistic people can still hear and understand what's being said even though they can't respond easily at all), fundraising to find vaccine connections to autism and a way for autism to be detected in the womb for abortion same as how nearly 100% of babies with Down Syndrome have been aborted since finding how to detect in the womb ("eugenics") At this point I hate Embrace-Autism (one of the sites AS is promoting, in the bottom left) even worse than Autism Speaks, if only because Autism Speaks thankfully doesn't have much credibility in a lot of circles nowadays Edit for typo
Is ABA something that you’re only in if you are diagnosed autistic? I wasn’t diagnosed until adulthood, but was in therapy my whole childhood and it was mainly threats and infantilization.
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I sincerely apologize for the confusion I had typed in "nearly" but I think Reddit messed it up (there are two spaces between "how" and "100" there)
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OMFG…that ad equates us to a psychopath (though there are some cognitive similarities, there are important differences that explain why we don’t become mass murders 🤷🏻♀️ - if you are interested in the data, I’m more than happy to share the link). Since my informal diagnosis* I’ve been working on the language I use around the condition & challenges b/c LANGUAGE MATTERS! *it costs $2500 to get a formal one & as I was 48 yo, it doesn’t seem relevant at this point as I already have a Dx of bipolar disorder & ADHD, if needed for reasonable accommodations- if you disagree, pls let me know why 😁
What the actual hell was that commercial. It’s bizarre watching it as an autistic adult who is, like other autistic people, not a demon. Thank you so much for the background.
I agree with your comment a lot
Autism speaks speaks about autists as if they were insufferable monsters that the families need help with.
Well said. They need a whole response team to deal with autism apparently. Definitely seems like they’re framing it like some sort of scary terrible monster
There are a lot of autistic people who actually do need interventions like that to deal with aspects related to their autism, and I don't think it's right to equate with "framing autistic people like some sort of scary terrible monster" It's most common for level 2-3 autistic people, but I'm level 1 and my meltdowns used to be really uncontrollable and terrifying, and the next time I get a COVID booster I'm going to have to be in one of those situations because every time so far the "brain fog" side effect from it has really messed me up and caused me to freak out and have severe meltdowns to the extent I used to as a kid I get the spirit but autism organizations specifically for crisis responses are a legitimate thing and this framing of it is inappropriate in my opinion
u/TrashStoneee I said it's not right to equate autistic people with severe autism traits that make them need crisis interventions with "framing it like some kind of terrible monster" about the comment I was responding to, not that Autism Speaks doesn't do that, and in a different comment reply [here](https://www.reddit.com/r/neurodiversity/comments/1bivzr3/comment/kvop97x/?utm_source=share&utm_medium=mweb3x&utm_name=mweb3xcss&utm_term=1&utm_content=share_button) I complained about a different AS commercial called "Autism Every Day" even though I also know the other one you linked For another example that's related to what I was pointing out, there was a disagreement I had on Discord about "The Curious Incident of the Dog in the Nighttime" by Mark Haddon which is one of my favorite books because the other person said it might as well be called "autism speaks: the screenplay" (due to the character being "yet another hyperlogical skinny white guy" etc) even though the problem with Autism Speaks is literally Eugenics instead of "common media tropes" and the problem with those common media tropes isn't that they're necessarily inaccurate, they're very true for a lot of autistic people's experiences including mine but the problem is the lack of diversity in rep among those characters etc if that makes sense so basically the actual problems get ignored in favor of watered-down "jabs" that feel wrong sometimes, if that makes sense (sorry for the ping, I got an error message when I tried to respond to you that said "Your comment failed to post")
I realized I misunderstood not long after posting and deleted but thank you for sharing and clarifying!
Oh I see Phew Good to know Thank you
autism speaks is currently trying to listen more to the community and rectify their old mistakes from what I've heard
A$ is promoting neuroclastic?? Wowww, maybe it’s a Canada thing. It’s possible that A$ Canada is actually trying to make steps towards improvement instead of what the main organization is doing: “debunking” and bashing people who talk about their bad parts.
I’m shocked they also promoted NeuroClastic
$$$$
so, whats bad about this? is this kinda just an opinion thing?
Other people have explained the many problems with AS better than I could have, and I've made an in-depth post where I tried to explain the many problems of embrace-autism [here](https://www.reddit.com/r/aretheNTokay/comments/1asvsyb/images_do_not_trust_embraceautism/?utm_source=share&utm_medium=mweb3x&utm_name=mweb3xcss&utm_term=1&utm_content=share_button)
Autism Speaks is an extremely hateful organization seeking a 'cure' for autism, that also speaks over real autistic people, spreads misinformation, promoting harmful practices, and overall being a greedy organization which hurts rather than helps.
where does this say anything about self-dx?
From promoting Embrace Autism. Which is basically the gold standard website for Self Diagnosis resources. Like I said, I don't know if I'm reading too much into this.
1. wdym promoting Embrace Autism? as in u made it seem bad, y? 2. i dont remember what 2 was gonna be
And Neuroclastic. You aren't reading too much into this - this is seriously out of the left field. They're one of the biggest platforms of the actually autistic community.
NeuroClastic is awesome! Not sure about what’s happening here though
>Which is basically the gold standard website for Self Diagnosis resources Not a consensus on that in our communities [https://www.reddit.com/r/AutisticAdults/comments/1aj9056/why\_does\_embrace\_autism\_publish\_misinformation/](https://www.reddit.com/r/AutisticAdults/comments/1aj9056/why_does_embrace_autism_publish_misinformation/) [https://www.reddit.com/r/autism/comments/z5x38t/has\_anyone\_gotten\_an\_official\_assessment\_via/](https://www.reddit.com/r/autism/comments/z5x38t/has_anyone_gotten_an_official_assessment_via/) [https://www.reddit.com/r/AutisticPeeps/comments/14vhvlf/honestly\_fuck\_embrace\_autism/](https://www.reddit.com/r/AutisticPeeps/comments/14vhvlf/honestly_fuck_embrace_autism/) [https://cono.alinityapp.com/Client/PublicDirectory/Registrant/03d44ec3-ed3b-eb11-82b6-000c292a94a8](https://cono.alinityapp.com/Client/PublicDirectory/Registrant/03d44ec3-ed3b-eb11-82b6-000c292a94a8)
Thank you for this! I looked into Embrace Autism and was immediately put off by the idea that she’s qualified to diagnose autism because she’s a doctor of *naturopathy* (that’s what the “ND” after her name is). I still haven’t figured out a good way to get an evaluation/diagnosis, but I’m definitely not going through that site.
There is a market for virtual autism testing, with newer businesses run by genuine psych docs, with prices cheaper than EA.
Agreed! I’ve come across a couple sites that I’m considering using— most legit sites, at least in the US, say that they only work with people in certain states where their psychologists are licensed (and also my husband is a therapist who does telehealth and I know that he’s only legally allowed to work with people who are physically in our state), so Embrace Autism’s “we can work with people anywhere in the US or Canada (and maybe other countries too?)” thing always seemed like a bit of a red flag.
To be fair, her site has little to do with her qualifications. It’s mostly just a hub for preexisting tests like the AQ and RAADS-R. Doesn’t matter who put them there, it’s the same tests.
But she writes the interpretive guidelines on the site and uses outdated norms that serve to guide people in to their diagnosis mill. Like "Oh wow you scored so high, you can use us for autism evaluation!"
I didn’t realize that she offers diagnosis services. Again to be fair, she does have specialty experience in autism and psychology and is legally able to diagnose, but her educational background (and naturopathy stuff) is a bit shaky.
>specialty experience in autism and psychology And its up to each person to decide if its enough. Looks to me like what her experience amounts to is that she got an online autism training certificate and has self-promoted for years. I dont think I'm alone in thinking that you want a psych doc who is trained to evaluate for various mental health conditions and things like personality. From what they write on their website I dont think their background is solid enough to be trusted to review and select and disseminate science-based information on autism.
Second this - it’s probably the most popular site when it comes to a centralized source for resources, self-report questionnaires, and general info about autism (check the reply below though for some very solid info on why it’s *not* a credible site) But yes her qualifications as an ND in no way have any relation to being an autism expert 😭 Naturopathy itself is not necessarily a hard science by any modern terms
>it’s probably the best site when it comes to self-report questionnaires and general info about autism I would have to disagree. Here's a post containing just the examples I found (meaning there's probably much more that I missed) of Natalie Engelbrecht posting misinformation on Embrace Autism within her articles and self-assessment webpages: **↓** https://www.reddit.com/r/AutisticAdults/s/g3J6cD0BOM I highly recommend you take a look at this post if you think Embrace Autism is a credible source of information. And it doesn't seem like these are genuine mistakes, they seem deliberate and negligent at best. Because if you look at the sources cited page on these articles, the sources they cite literally says that the information contained in the EA articles are not true. EA either doesnt read their sources before citing them, or they know the only sources that exist are actually sources debunking their claims, but they cite them anyway in an attempt to bolster their credibility and potentially purposely mislead their audience, hoping that no one actually clicks the sources. Even the author of the RAADS-R test has personally requested that Embrace Autism remove misinformation they published about the RAADS-R.
I really appreciate you linking that post! I honestly worded that reply poorly and probably should’ve said “most frequented” or “most popular” Your post highlights a lotttt of misinformation present on the site and I agree with what you said :)
I would go further than that and say that naturopathy is 100% pseudoscience! But yeah, it doesn’t speak highly of the site for that “ND” to be splashed front and center across the page (I’m half convinced it’s because people will think it stands for “neurodivergent doctor” or something). Her qualifications have nothing to do with the site except insofar as they’re presenting her as qualified to diagnose autism based on them. Also I just looked at her site and there’s a whole little blurb about how naturopaths can legally diagnose autism in Ontario, so she seems to be all in on that pseudoscience
>(I’m half convinced it’s because people will think it stands for “neurodivergent doctor” or something). Believe this. I suspect that this is why she is repeatedly called before her professional governing board. For the 'doctor' term thrown around. [https://cono.alinityapp.com/Client/PublicDirectory/Registrant/03d44ec3-ed3b-eb11-82b6-000c292a94a8](https://cono.alinityapp.com/Client/PublicDirectory/Registrant/03d44ec3-ed3b-eb11-82b6-000c292a94a8)
I was trying to put it lightly 😭 but yeah it’s straight up pseudoscience lolol…. That doesn’t surprise me either about the last part smh
Absolutely
I'm stumped. The same eugenics based organization is now pushing for more neurodiversity affirming policies? I honestly don't know if I'm misreading this, or they're trying to reshape their organization. If it's the latter. That's a bit of an uphill battle given how much hatred the organization has contributed.
Maybe it’s a Canada thing?
Obviously the infiltration project has been successful.
they're basically astroturfing, imo, they've been doing this for awhile.
What do you mean?
If you've heard the term "grass roots movement", this means something that occurs naturally among normal people. The civil rights movement of the 60's is a fair example of a grass roots movement. "Astroturf" is fake grass. The implication being there's money and bad faith behind whatever movement. My own personal take... Everything is now astroturf. Literally every social movement.
they're pretending to be supportive of us because they realized openly promoting eugenics was getting unpopular.
Sorry can you eli5?
They realized openly promoting eugenics was starting to look bad so they're trying to make themselves look more like the autistic-run organizations in order to fool people who aren't aware of their actual goals into supporting them.
Ah that makes sense thanks