We NEED to Discuss the Autism Speaks Rebrand Attempt.
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- Опубліковано 29 чер 2024
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📒 Sources 📒:
I am Autism Autism Speaks Response: www.autismspeaks.org/i-am-autism
Eileen Lamb Instagram: theautismca...
Is Autism Speak a Hate Group: awnnetwork.org/is-autism-spea...
NHS Autism is not an illness: www.nhs.uk/conditions/autism/...
Autism Speaks: www.autismspeaks.org/
Autism Speaks Wikipedia: en.wikipedia.org/wiki/Autism_...
Autism Speaks No Longer Looking for a Cure: www.disabilityscoop.com/2016/...
Autism Speaks Genetic database: www.thetransmitter.org/spectr...
MSSNG: research.mss.ng/
Screening for Down Syndrome: www.nhsinform.scot/healthy-li...
Epilepsy and Autism: www.epilepsy.com/stories/epil...
Autistica: www.autistica.org.uk/
Spectrum 10K Controversy: theautisticadvocate.com/spect...
Autism Speaks Resignation Letter (John Elder Robison): jerobison.blogspot.com/2013/1...
MSSNG Launch: abcnews.go.com/Health/mssng-p...
The History of the Puzzle Piece Logo: autism-advocacy.fandom.com/wi...
Perspective on the Puzzle piece: web.archive.org/web/200707140...
NAS: www.autism.org.uk/advice-and-...
Lovaas Wikipedia: en.wikipedia.org/wiki/Ole_Iva...
The Problems with the Puzzle Piece: neurodivergentrebel.substack....
The Puzzle Piece and Negative Emotions: www.ncbi.nlm.nih.gov/pmc/arti...
Autism Speaks Financial Statements: www.autismspeaks.org/sites/de...
Autism Speaks CEO Salary: projects.propublica.org/nonpr...
How Many ABA Hours are Needed: www.goldenstepsaba.com/resour...
CDC Autism Data: www.cdc.gov/mmwr/volumes/72/s...
What is Red Instead: happilyeverautism.com/what-is...
UN Calls JREC: abcnews.go.com/Nightline/shoc...
Matthew Israel: en.wikipedia.org/wiki/Matthew...
Alison Singer Wikipedia: en.wikipedia.org/wiki/Alison_...
Alison Singer Quits: www.theguardian.com/lifeandst...
Autism Speaks urges Parents to Vaccinate: abcnews.go.com/Health/autism-...
Retracted Autism and Vaccines Paper: www.thelancet.com/journals/la...
www.ncbi.nlm.nih.gov/pmc/arti...
www.ncbi.nlm.nih.gov/pmc/arti...
Shock Devices Still Allowed: www.boston.com/news/local-new...
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I’ve been researching Autism Speaks for so long that I can’t even remember who I am anymore! 😅 I hope you found this one interesting. I really don’t think this video series was a good way to show the autistic community that they are listening and taking concerns, about their past and present, seriously.
Let me know what you think ♥
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Autism speaks is responsible for most misconceptions and rumours we have about autism today
We are fluent in Afrikaans and English. We also understand Dutch 100% and German we know around kindergarten level
Polish is hard 😊
Why place non-adsense with jarring timing, rather than at very front/back/both, where people will still watch out of mutual consideration?
*Checks* I've studied a little of Gothic, and of classical Latin. I'd like to work on both. I'd also like late ancient Greek, for some of my research, and Ukrainian, for other research.
"Let your child's torture supervisor know if your child has developed PTSD from their torture sessions, so they can slightly lower the intensity of their torture sessions."
Unbelievable.
I literally didn't even search far for that quote - it was the first ABA practice I stumbled across 😬
It seems to me that the people who are the professionals should be the ones who note if their patients are developing an adverse reaction of some kind to their treatments? Isn’t that kind of like, their whole purpose in being the professionals? It seems sort of like “let your brain surgeon know if they’re messing up your delicate brain surgery so they can stop removing your appendix right away and start operating on your brain instead,” to me. They’re the experts, so shouldn’t they be the ones to tell me what to look for if their treatment isn’t working rather than me noticing “hey, why are you amputating my child’s leg to treat their broken arm?”
it’s so sad too bcuz ABA can be extremely helpful when CLIENT-LED!!! when clients set their own goals and lead sessions, they are able to improve the skills that they feel need help. the problem is when other NT people try to decide what people with autism need to address, and come to it as “fixing” rather than improving an area they struggle in
I haven't watched the video yet and,,, *WHAT*
@@goopbuniabsolutely, I think it should be based on what the child cares about, always focusing on ways to make it easier to communicate and less easy to act in challenging ways (I.e hitting others/hurting self, because that’s the only behavior I think is acceptable to try to reduce) It’s just NTs are terrible at gauging the actual antecedents and have already made the kid upset before they’ve learnt anything!
"we have autistic employees, so we can't hate autistic people." Is the same thing as "I have a black friend".
But if you do have many black actual friends, you're not allowed to mention that either. Because there is no winning with people.
Exactly my thought ^^'
"I have a black friend, that works for me."😬😵
"We literally need to pay autistic people in order for them to tolerate even being in the same room as us."
just like a trans person can't be transphobic bc they're trans. there's not many. but they exist
The ad: *autism is scary and your parents will have a messy divorce if I come into your house*
Me, as a child: *lining up all my animal figurines by size* oh yeah it’s all coming together
This made me choke lol
I mean the charity is for high needs autistic cases, not qUiRkY ones that end up becoming well functioning independent adults like you or I. Pretending it’s the same thing to have a high needs autistic child who needs constant supervision and catering to and a quirky but average needs autistic child is disingenuous.
@@mommalion7028i feel like there’s better ways to help those cases than torture prisons, right
@@mommalion7028 because filming a mom talking about driving off a bridge with her high support needs child inside is helping them? Be so for real. We all have our bad moments, but we shouldn’t support the folks who used that and the whole “I am autism” ad. Autism Speaks clearly has no place in helping families of high support needs children.
@@mommalion7028 Supporting autistic people with higher support needs is a perfectly valid thing, and it can be very different to people with lower support needs who can manage it themselves, but lower support needs autistic people are *still autistic*, and the advert really misses that. Portraying all autistic people as high support needs is an outright lie, and I can't see how any good can come of a charity claiming to support a disability and yet misrepresenting it.
Autism speaks is giving real “I’m not racist because I have one Black friend” energy
Exactly this. Tokenism. All I see from them is tokenism and misdirection. There don't seem to be any outright lies, but a whole lot of lying by omission and half-truths.
Exactly lmao
tokenization, of course. Very intentional.
Haha right that’s so true
Lord I felt this the entire time. Made even worse with the French accent somehow....
“Mind your misconceptions” comes off super preachy and condescending-effectively directed at the autistic community itself. A bit counterproductive, I think.
"Mind ye preachy-condescendation"
Not when their intended product is getting rid of us, it's not counterproductive.
Absolutely. Like how about they mind the misconceptions that they still spread about autistic people.
On point.
Adult autistic folks are so used to gaslighting at this point, I think they've learned to see through it. Autism Speaks are the ones who gave the poor optics by encouraging "treatment" -- ie medication and training, and the idea there was ever a "cure" for what isn't a disease. It's no mystery why so many people who've been alive since the '90s feel Autism Speaks is utterly gross.
Yeah, I thought it was gonna be about them minding their own misconceptions but instead it’s all about correcting autistic people. It’s horrible.
Autism Speaks does not speak for me!
¿Is yo autizm speakin' for itself & u?
@@SkedmundSchmedmundA person doesn't "have autism". A person is Autistic. It's like asking a black person "does your blackness speak for you?" It's wrong and insensitive.
@@yeshevishman As an autist, mah bad g, ya make a very valid point.
Edit: Then again, this does remind me of the bar from a rap song: "I got black, I got white, whatchu want?" Now, ignoring the context coz i don't remember wot it is, he's saying he has black & white, so they essentially mean the same thing methinks.
Edit 2: I did not read the 2nd quote entirely, but I'm still leaving the 2nd thing anyway.
Edit 3: I jusr realized wot I said was a joke m8 (or was it /j)/j)/j/j/j/j/j//j/j/j///j/j//j/j/j////j/j/j/j/j//j/j/j/j/j/j///j/j/j/j/j/j/j/j/j/j/j/j/j/j//j/j/j/j//j/j/j
*or me!*
Autism Speaks speaks. Even though we have *repeatedly* asked it not to
The fact that she's just responding to the top 10 very valid critics of autism speaks and is just answering "we don't" without providing EVIDENCE...I'm like, you can say what ever the hell you want if it doesn't have to be backed up by facts lmao
Yep. it is condescending
You can tell they don't know anything about autistic people because that kinda shit won't work on us
"mind your misconceptions" as if it's our job to view them favourably and not theirs to prove they deserve to be viewed favourably
Exactly the title alone shows they haven't changed at all and that NO ONE should support autism speaks
The irony of Autism Speaks having disabled comments :/
The only disabled thing about them.
Right? This would be bad enough on its own, but it's especially bad when they're explicitly asking folks to sound off in them. Not a great olive branch there, A.S.
Seems also like all the video is mostly, “no, you’re wrong”, rather than, “I acknowledge why you would think that but we’ve changed by doing x, y, z”. They don’t want to listen.
The cowards
Womp Womp.
She keeps saying “We don’t do this” meaning “We no longer do this,” but hoping we’ll hear “We never did this.”
She did say "never" about the electric shock part.
@@Isaac-hm6ih If you listen carefully, she said “will never,” not “have never.” Possibly just a poor choice of words, possibly an important distinction.
@@ebwarg you can be assured that every word she said was weighed and looked at ten times and very carefully and intentionally chosen.
While also just lying because they clearly do still do this lol
@@AsaTorellbecause, ironically, their autistic employee is just a mouth piece.
I work in an early-intervention preschool setting, and this year we have a student join our class that was previously in an ABA program (we are staunchly anti-ABA in my school). Because of their use of "trials", he RAN AWAY from us any time we had bingo daubers or stickers. This child was 4 years old! We spent a good four months building trust with him and showing him that we won't force him to do things he doesn't want to do, before he finally seemed comfortable in our class and with us. It was heartbreaking to see! His parents were traumatized too because they tried to push back against the school and what they were doing with him, and they gaslit the parents into thinking they were being bad and difficult parents for advocating for him.
An anti-ABA school...what a beautiful phrase you've written.
That just made me so happy to hear that *somewhere* this exists.
@@quinn0517I know I’m 27 fucking years old but can I attend class? Lmao
In my experience the phrase “mind your…” is often used to talk down to others who are doing something “wrong.” It implies one person has authority over another and has the right to dictate right and wrong to another. “Mind your manners!” Is a great example.
I reckon they knew
Autism speaks: we are doing good! Our symbols are not harmful!
Autistic people: can you tell us with stats what good are you doing? Can you show how many autistic people you employ? Can you explain what your symbols mean?
Autism speaks: No, just trust me
We have a really smart and kind man in Italy that actually did it right in a city near Milan I believe. He asked for funding any many lenders refused to listen to his idea saying he was crazy and stupid for wanting to do it. Three years later I believe this guy open a few pizzerias near Milan entirely run by autistic people. They are given jobs to run these places entirely and they are quite successful. He's done so much good for us that the president recently had a dinner with him for representing the good that there is in Italy during the celebration of the italian republic. I'm not sure but I think they've also launched frozen pizza too. This is doing good.
Isn't it weird to expect them to hire autistic people? I mean, we ARE a minority. It could be hard to find someone that's autistic, willing to work for them and be qualified for the job at the same time. Do you think they should pick someone less qualified if they are on the spectrum? (I'm not saying that autistic people are inherently less qualified - it's just that there's much less autistic people than neurotypical people, so statistically it would be much harder to find someone just as good)
@@michaw7408 the point is not about people being unqualified. People who are on the spectrum get severely less employed despite having the knowledge. You kind of set yourself up with this one. Because you're implying people on the spectrum are incapable or too stupid to know how to apply for a job. I call myself a certified idiot for example. But I'm totally aware about being hired for a job. I know what jobs I am qualified enough to do and I think many autistic people know too. It's not about collecting autistic people as pawn for their game. It's about us not being hired despite being qualified based on the assumption we're inherently stupider or weird compared to our neurotypical peers. A lot of workplace demands such as eye contact, greeting people, smiling etc. are indirectly required of you in many many jobs. And many employers will not bend on this. Even if you have a valid excuse or point. They'll find a way to demonize your lack of eye contact and make it a work related issue or priority. Us autistic people get thrown off the job market because of these differences appearing as unappealing to potential employers who refuse to hire us because they deem our very normal and uncontrollable behaviours as weird or wrong in their head. It's the same happening with the gender pay gap. Women are paid less because they're *perceived* as being less valuable or less capable. Notice the focus on the word perceived. This is in no way the truth but it is still being pushed as an idea as if it were true. And the same is happening for people on the spectrum. We're being discarded as potential candidates despite having very similar backgrounds to our neurotypical peers based on perceived differences or the lack of flexibility offered by employers. The same employers who believe hard work pays off, that you should respect authority even if said authority is disrespecting you and your time. You could be just as talented as them but you're getting discarded like trash. And that is the issue. We all know it's rude and a waste of time to apply to jobs that you're not qualified for.
@@nikitatavernitilitvynova If they were hiring based on merit, then it's reasonable to expect that ratio of autistic people to neurotypicals in that workplace would be pretty close to that ratio in general populace. That's how statistics work, it's not an ableist statement and most certainly it's not implying that autistic people are worse.
Last time I checked there were around 3% of autistic people in general population and it *IS* like that in the Autism Speaks company as well, so it looks to me like they are doing OK in that regard.
@@michaw7408 If autistic people suffer more unemployment than allistic people (which is probably the case but I haven't looked it up), then I would expect a charity that supposedly is there to help autistic people to make an effort to employ as many autistic people as possible. I would also expect them to offer working accomodations to help autistic people. Because that does help in a very practical way, and because they have the actual lived experience of more autistic people right in the company, which, again, can help their cause.
Both these things would lead to more autistic people being employed in Autism speaks than the percentage in the general population.
I feel like Autism Speaks views autistic people as an annoyance
They do, sadly
It's a group founded by parents for parents and they reflect the ableism in this world.
And think we should never be born
They see autistic people as a problem to be solved, not a minority to be accepted.
@@mardasman428The wild thing about that is that autism is something like 80% genetic. If you have an autistic child, there is a good chance that you are ALSO autistic! It is very clear at this point that my father passed his neurodivergence to me wholesale, then hated the traits in me he hated in himself. How many “autism moms” are just terrified their children will be rejected by society the way they were? 😓
I love how their rebrand is a video about the "misconceptions" about their organization and not actual misconceptions about autism that still float around.
This feels like Umbrella in Resident Evil calling them selves "Blue Umbrella." To "clean up" the messes left behind. Lots of suspicions.
Autism Speaks is the real life Umbrella Corporation, I'm SCREAMING 🤣
Just imagining Wesker with a puzzle piece pin attached to his fcking jacket omg 💀
@@bbo7002 I wish Capcom would do that just to make fun of Autism Speaks what are they gonna do against a billionaire dollar Japanese company?
When the puzzle piece was decided upon there was actually a janitor that walked in to clean and they were autistic! We are so inclusive
😂
Yeah, because they found it too riskful to give the unfortunate guy a job with more responsability.
The one autistic person in the room chose a puzzle peice.
All the autistic people on the internet chose a lemniscate.
Which sounds more authentic?
Maybe this janitor actually "suggested" the puzzle piece -- by picking it up off the floor and putting it on the table, before vacuuming that section of floor. And then the rest of the team was like, "ooh, yes, let's use that!"
🙄 (continuing the joke, in case that's not obvious.)
@DavidLindes actually the janitor just found the puzzle piece but the nt's didn't understand what he was trying to express.
The way she sounds so proud of the one autistic person in the room when deciding on the puzzle piece logo 😭 a decision like this should've been made with 100% autistic people in the room imo!
Exactly. You know who designed the trans pride flag? A trans woman, and it was adopted organically by the trans community. You know who designed and sewed the first rainbow flag? A gay man, Unitarian Universalist minister, and occasional drag queen who was heavily involved in the early days of post post-Stonewall LGBT activism. Any symbol that is imposed upon a community rather than being chosen by a community is bound to be rejected. There is of course the topic of reclaiming symbols, for instance the LGBT community's reclamation of the pink triangle, but I think we're a pretty far way off from the autistic community reclaiming the puzzle piece.
I think having some neurotypical consultants there would have been a good idea, since the logo was to be used for the general public and many of them aren't autistic. So not ONLY autistic people in the room for an outward facing PR decision like this.
@@Isaac-hm6ih That would have been best practice to have autistic representation, whether it's the base majority, consultants, a board, etc. I've been a consultant before with my local health unit for research and it's a chance to give feedback and consideration as someone in their target demographic. It's also the based of any basic research methods class and recommended on many government websites.
The autistic person in the room could have been the cleaner for all we know. It just screams using technically correct "facts" to intentionally mislead.
Even if there would have been an autistic person in the room and at the table when they decided it. Who says the decision was unanimous? Could very well be that the autistic person didn't like it.
the haircut thing reminds me of a vid i saw where they were supposedly an 'autism friendly' barber shop thing (i forgot the word). but instead of making the kid feel yk, safe and comfortable, they forced him to sit thru the buzz cut while he was screaming and crying with his ENTIRE FAMILY (i heard like 6 or so people) YELLING in the background "GOOO YOU GOT THIS YAYYY WOOO LETS GOOO" and the funniest (not really) part was that there was a puzzle piece poster in the bg. like sure! instead of using scissors (quieter, no buzzing, further from his head) lets use an electric razor that feels horrible to the kid and makes a VERY loud droning sound! lets have people yelling, doing nothing but adding to the noise!!
i get that its different for everyone, and the loud noises might have helped, but at the same time he was very clearly upset?? crying the whole time?? couldve been avoided so easily
Bro like I get sometimes you gotta use the buzzer cause it’s less time and probably looks cleaner, but we can at least give the kid some noise cancelling headphones or headphones that play quiet music, and a comfort object, and we can take breaks in between.
@@agarcia3986 exactly 😭 they basically forced the poor kid to sit there
They didn't even bother with a company / youtuber apology of "We are so so sorry that all of you are stupid and misunderstood everything we've done". Instead they just went with "You're all stupid and misunderstood everything".
Logan Paul apologized better.
36:21 "If you feel that you are being bullied in a harsh way, report to your offender that you could be bullied in a more approachable way."
right? oy!
lol.
@@user-cw3wm9lx7w I doubt it is funny to patients report such things to ABA therapist
It doesn't matter if you THINK you don't hate autistic people or don't think you're ableist, but an organization that wishes to eradicate or "cure" autism and repeatedly displays ableist views that go against what autistic people actually want and support is an ableist organization and by its existence is against autistic people.
Their video sounds like it's telling the autistic community to stop complaining because we should want to be cured. A group claiming to speak for a community that isn't run by members of the community will never truly speak for us or understand what we want/need.
@@Scarygothgirl precisely
It's a classic reactionary/liberal take. "Well, unless you _know_ they had hate in their heart towards the differently-abled, it couldn't have been ableism!"
Whether they're screaming slurs or insisting they're helping you while they do it, if their actions cause material harm to autistic people, then those actions are ableist.
They may not outright say they want us to be eradicated, but they are definitely pushing the narrative that a good autistic person is someone who behaves like a neurotypical. that's why they push ABA
I mean there's a reason why “I'm not racist but…” is a meme. Literally no hate group would ever admit to being a hate group because that wouldn't make them a very effective hate group and no one believes they're a bigot. Even the fucking Nazis tried to pretend that their euthenation program for handicapped people somehow benefitted these people.
I just did a quick read and from the beginning Autism was described as "something" being missing with some children (read abnormal) that prevented them from being like other children (read normal). The puzzle piece appeared in 1963, with the crying child, and symbolized that having autism/being autistic was something negative.
You cannot rebrand something that started off negative. Even if it's just meant to symbolize that there is something "puzzling" about the condition, it still puts the condition before the person and dehumanizes individuals by insinuating or stating that people who are autistic/have autism aren't people but instead are puzzles to be solved. Ew.
You cannot rebrand a symbol that started off representing something negative. It needs to be completely done away with.
Counter argument: the word autism itself. Not everyone uses it as exclusively negative anymore, so the meaning has changed in focus over time. I'm not saying it would necessarily be worth changing a logo's meaning the same way the word's meaning has been changed, but it's possible.
@@Isaac-hm6ih To throw my 2-sense in, something can only be reclaimed by the wider community it involves. Autism as a word that has been reclaimed by the autistic community, and welcomed as a part of identity. It can be a personal choice for some autistic people to reclaim the puzzle piece for themselves, but autism speaks as an organization does not represent the greater autistic community and so is not in any place to reclaim imagery and symbolism with a dark past.
Planned parenthood successfully rebranded. Its start was actually fairly negative rooted in racially charged eugenics.
That was about a hundred years ago, I think.
Them saying "we don't hate autistic people" sounds an awful lot like "we don't hate gay people, we just hate their lifestyle".
Lamb told me I shouldn't share my experiences of abuse in ABA.
I have no respect for her.
😮 wooow. I am so sorry. I think your experience and perspective is crucial to understanding how to protect and support today’s autistic youth. I hope you feel bold enough not to listen to someone say something so harmful and wrong.
@stephenieolson8535 Thank you. It's hard that to constantly hear them call my experience "anecdotal," despite me and other survivors organizing.
We've gone over the literature that backs this program and found it fundamentally unethical. Why can't we say something about it?
Did you screenshot what she said? If the conversation is still around, I would do that and blast that on Facebook and expose her
@@kaitosalem4391 they don’t want you to talk about it because it makes their bad reputation look even worse. It’s not about you. It’s not about what’s right. Their behavior comes from wanting to protect their own interests. It’s disgusting.
@@stephenie44NOT going to back down, that's for sure. I got my nephews out of the program.
We need a counter charity called "Autism Fights"!
I second that
I'm fighting in the war against autism
on the side of autism
As an autistic person, I fully agree with this message
Honestly, yes. It would send a clear message and have an immediate clear mission statement. Not to mention that it would be difficult to turn it against people with autism with a name like that. At least without resorting to as many attempts to cover things up as Autism Speaks seems willing to resort to.
Like those Scientology Sucks guys! I wonder if they’d lend us their projector…
The biggest thing that is glaringly apparent, is that AS hates autistic people reacting in an autistic way, or seeing things differently. All I get from them even in these videos is “how dare you form your conclusions based off of facts and your lived experience, you are just supposed to do what you are told; & we are telling you to shut up.”
autism does speak, it tells me to buy little treats
Mine tells me to rant about the project Generation Loss made by Twitch streamer RanbooLive
The fact that they give more money to the non autistic owner than grants to ACTUAL autistic people is absolutely vile. No money should go to his salary at all. Charities are to help people, not for the people at the top.
Running an organization can be a lot of work, so paying a livable wage to allow staff to work full-time seems reasonable to me. But not anything higher than a living wage for working in a charity.
People working at charities and nonprofits deserve pay. The average employee makes less on average than a population's average, usually for a lot of work and even burnout. Many execs also can easily make half in the field than others. The problem isn't that people are making money in charities. If you don't have a stable core it will fall apart quite quickly. There is such a thing as overpayment though and half a million certainly is that.
@@Isaac-hm6ih
Generally agree, but Autism Speaks is a hate group thinly veiled as a charity, so everyone in it should go to jail instead of getting paid.
It might just be taxevasion front, rich people tend to make charities to avoid taxes
@@Isaac-hm6ihstill, hard work doesn't excuse the CEO having more money in the expense of workers.
No charity CEO should be taking home half a million dollars in yearly salary/employment benefits. That’s ludicrous. I don’t care how much money the charity brings in as a whole. I don’t care if that’s a fraction of a percentage of the total budget. Regardless. That’s ridiculous and disgusting.
I know someone who works pretty high level in charity fundraising, the vast majority of (US based at least) charities are just rich people laundering money. Any positive effect is coincidental
Spot on. 500k is enough to live in even the most expensive places in the US very comfortably. Is it necessarily like... "I have a super yacht" wealthy, no. But it's very much "I have a boat that I berth at my friend's house." levels of wealth.
Please stop bashing America @@SeraSmiles
@@Demonetization_Symbol what? I don't think that's what was going on??
@@Demonetization_Symbol 🤨 ya keep silent on things you don't agree with if they are happening in America, the land of free speech... 😐
What really gets me is the fact that they have a picture of a person with Down Syndrome on the homepage of their website (at the time of me writing this comment). I started on my self-discovery journey this past February, and got diagnosed as Autistic last month--but I did see a therapist when I was 16 who said I was probably an Aspie. (She herself was also Autistic.) I told my parents about it and they immediately took a very firm stance in denying any form of an idea that I might be Autistic, and my dad even went so far as to tell my therapist off about how he thought she was so deeply wrong to associate what seemed to him as such a terrible "illness" with me. I stopped seeing her soon after. This was because my parents were still basing their assumptions off the misinformation they had been exposed to about Autism being a form of Down Syndrome. Autism never came up again until my current therapist suggested it earlier this year, and once my parents actually got to research into it a tad further and listen to my therapist's explanation, they were put on the right track towards being productive & non-pitying allies. It's the pathologizing, charity-based perspective that makes neurotypical (and undiagnosed!) people scared of Autism so they can seem to have a sympathetic stance on the outside to "help the less fortunate" who are Autistic.
I never suffered because of autism. I suffered because of allistic adults who would rather lock me in a room alone for 7 hours every day than deal with me.
OMG "Well we don't use SHOCKS anymore but we still support the general use of negative reinforcement up to and including pain" well. I suppose that clears it all up.
That just leaves out The Judge Rotenberg Centre, no one believes that they don't still use shocks cause why else did they feel the need to get the FDA's ban overturned.
Ah yes, physical pain and distress as a form of therapy to autistic people, that doesn't sound like it could be ableist at all (said with so much sarcasm it's leaking from my ears)
Yeah that is somehow better. Obvious sarcasm.
Ah yes because hurting someone who is immensely more sensitive is somehow gonna make that go away?
“We don’t torture the kids as badly anymore! We used to give them a minute of agony, now it’s only 30 seconds!” type argument
Autism Speaks is the kind of group I would never trust no matter how much they've "changed". To me, the past of "autism is the monster under your bed come to destroy your happiness and family" is something I don't understand the stance of trying to "change" rather than shutting it down and throwing it on the scrap heap and starting a completely new autism advocacy group. That they didn't, everything is built on the foundation of "autism is the disease that stole your child and haunts your home and makes it your living nightmare", and it's just like with aba, you're changing some of what's on the surface to try and make it look better, but the root "broken people that need fixing" is still there, festering underneath, and still comes out in language and behaviour and how they treat us.
To be fair, “Autism Speaks” hasn’t actually truly advocated for autistics: we’ve never been their target audience to serve, we’ve just been their targets to hit with their weapons.
EX-FVCKING-ZACTLY!!!!
Sorry this is completely unrelated, but you have an absolutely fantastic username.
Very well said! I completely agree with you.
THIS! It's an entire read on AS!
Ugh, can people with children/grandchildren/nieces/ nefews with autism or "work" with autistic people just shut up!? We can speak for ourselves, thank you. Yes, including non-verbal. Non-verbal autists can still communicate as well.
Really??? Living with us is not a walk in the park......I'm having difficulty living with myself some days....BECAUSE...of the autistic BS that my brain comes up with....how is that we can't be sympathetic/empathetic with NTs??? Both groups (ND & NT) are living on this planet at the same time.....I want to learn how to live together, not separate...
The reason so many of those people exist is because many autistic people *can’t* meaningfully advocate for themselves. There’s a reason most people talking about this online are low or lower support needs, because the ones with high needs can’t participate.
@turquoismama33 I feel you, I do. I wish we could live with NTs and be treated well by them.
However, my post was saying that I wish people w/o autism but know someone with it would be quite about the autistic experience. They do not know what they are talking about. They assume that we have nothing in our heads because their loved one doesn't communicate they way they do.
@@ammogan Autism is really a new thing....didn't make it into the DSM until 1980 and then the aspergers thing came in 1992 and now we have this spectrum classification......we ALL are learning how to deal with this....we are still in the trial and error stage.....noone really knows what we are doing yet......
I would say we are about 50%.....so much has been learned, but much still needs to be learned....and who knows what horizons will be broadened as we go along..
What is 50% today, may only be 30% or less in ten, twenty, thirty years...
@@ammogan "I wish we could live with NDs and be treated well by them." Did you mean NTs?
(calling hotline) "Yeah, hello, my employer is asking me to stop making sounds with my mouth especially among clients otherwise they might think I'm a little weird"
(answer) "Yeah he's right, you should try a little harder masking your autism"
is what I would imagine a non-autistic hotline would say......
A social worker told me that about my TICS
I didn't even realize I had been doing mouth stimming my whole life, until last week, I'm 51 😂.
I watched the "Mind your misconceptions" video to see how their rebrand was going, and it was *insultingly* bad. The way it cherry-picks the easiest, most surface level softball questions that nobody is even asking, and is painfully condescending about answering them.
I love that every one of the responses is just No. No delving into where these misconceptions come from, no explanation of how ideas have changed and they've grown, just... No. Giving real disrespectful vibes.
you're so right, it IS condescending
1:39 - I'm an ABA Survivor, who forgot he had ABA then had a breakdown last year (2023) and now am reverting back to my authentic self. I was orginally given ABA for (and these were the things that I know about), to stop rocking, eye contact (to give eye contact to start conversations), to say yes to the question "Are you alright?" and i suspect sensory things as well.
I had it when i was 5 and now am 32. I think ABA should be banned and should never be used.
Additional Edit
- The primary school I was at put me into ABA and didn't tell my parents about it
- I knew I was different at five so they were better off giving me a diagnosis at that age would had helped more than ABA. I got diagnosed when I was 26
36:29 - "and make sure the child feels supported and safe" yes don't give them ABA. FFS
I'm so sorry you went through that, no one should. That's insane they didn't even tell your parents
I didn't know there were schools putting kids in ABA without asking their parents! What year was this? Im sorry that happened.
@@RowenaSnow-px3jg according to maths: 1997
I have no clue what ABA is but it does sound like punishing the dog for its natural fear reactions and "Here, look! The dog is now calm because it no longer barks!". (Hope no one feels that I mean autistic people are like dogs!)
Man, at my school they wanted to support autistic people like myself during autism "awareness" (I prefer acceptance but this was what it was called) month. It was clearly half done, using autism speaks as well as out of date symbols. It was extremely frustrating however I was able to change it and do an entire presentation about autism acceptance month. While it was done with the best intentions, I wished neurotypical people took the time to educate themselves about the harm autism speaks causes.
Full agree, a lot of people, especially in positions of some amt of privilege, really don't do enough to understand an issue before doing something... ill advised, in professed support of said issue. Other hand tho, just.... gratitude for the advocacy. Genuinely extremely heckin cool of you
PS: 'pologies if tone is a mess/unclear, musta rewrote this a dozen times but yk how it go hahahahaaaaa
@@foul-fortune-feline I got your tone well don't worry!/gen. And thank you, it was to my own detriment though because I was going through burnout and was struggling to function, so I ran on anger lmao.
When we want representation, we end up tiring ourselves out because of burnout and because the people who should be helping don't. It feels like an endless cycle.
@@ashanenbyrogue804 Sympathies then
"Powered by spite" can be effective motivation haha, just.... definitely worth connecting with like-minded folk in the area if you haven't already. None of us can do this alone n that :3
also collective action bein orders of magnitude more powerful in affecting actual change than individual action, but I digress >w
@@foul-fortune-feline yes true I have been connecting it was just poor timing since we're all burnout cause we aren't getting great accommodations :/. I did ask them their opinion and reiterated their opinions into the presentation but I didn't want to add to their burnouts.
Also, thank you!! I'm sending my best wishes to you :)
I think itd be neat to represent an autism charity with a black light. Its not a normal lightbulb, you can either see much more or much less color when one is on, perspective really changes a lot with blacklights. Also black lights are just cool.
This is such a cool idea! When I was young my Dad had a black light and a strobe light and would set up ‘disco parties’ for us kids. I absolutely LOVED it, the doof doof of the music through the floor of this massive speaker he had, the strobing light and the sensory experience of the black light was so good for my sensory seeking self. At the time I didn’t know I was Autistic - I found out like 10 years later that my parents did but didn’t tell me and believed when I started school at 5 that I was ‘cured’ because I didn’t struggle academically 😒 so they never did anything to accommodate me intentionally, but I absolutely loved those disco parties because I could sit on the floor or jump up and down and feel the music and have the whole overwhelming sensory experience (in a good way)! Those memories still makes me smile today
I was researching autism as part of a class around 2008, and figured "Wow, these guys are the fucking worst, are they actually suing a kid for wearing a t-shirt saying "I'll speak for myself, thanks!"?" and then I start looking into autism again recently and imagine my disappointment that Autism Speaks is still around.
But they're no longer finding a "cure" for autism as of 2017, so that's.... progress?
I want that t-shirt so bad.
Also, yeah, they’re the worst.
Did they really?? That’s awful, what article can I search for?
yet they are somehow still invoved in studies that suggest feeding your kid more broccoli, to reduce their autism symptoms?
They did WHAT???
@@amazinggrapes3045 "they put bugs in him"!
17:49 The wolf pack declared themselves the best friends of the sheep, and the sheep had to not be afraid whatsoever. Not many might know the fact that the sheep was in that room when cutlery was chosen.
Excellent analogy.!
Damn that's straight up poetic
I'm stealing this line! It sounds bad ass!
The red and black wolf pack?
Huh, yeah... Not a big fan of using wolves as a metaphor/comparison for shitty people... (and none other than Autism Speaks' bullshit in this case)
This shit has been done for centuries in COUNTLESS stories already, and lots of people still hate wolves and try to eradicate them to this day... But sure, get off, I guess 🙄
I love how Meg is wearing red to go against Autism Speaks; that’s such a power move, GO MEG!!!
One thing about the light it up blue thing, I'm a light sensitive autistic person and blue lights give me migrenes. Want all blue lights removed from everywhere, it's painful.
Blue lights hurt my eyes so much.
Yes same, blue light feels physically painful in my brain, like gives me almost a headache and ‘tightening band around my head’ sensation. Instead warm light colours feel way more calming/sensory soothing to me
Why do they sound like abusive narcissistic parents
Because gaslighting is one of the traits of abusers.
Let's not use a medical diagnosis as shorthand for abusers.
Those with Cluster B disabilities are more often than not the victim of abuse.
they literally are lol. autism speaks is just a group that advocates for wine moms who happened to have a kid they cant ignore and neglect
Because they are. When a school psychologist first suggested it for my kid, they were the first thing that came up when I was looking to find out what it was. This was back in 2007/8. What I found was a bunch of horrendous stories of how their autistic child ruined their parents' lives by not conforming. And a few stories celebrating those kids who were able to mask enough to get along. I saw their methods as being abusive and never looked back at them. So for years, there weren't any resources that weren't connected with them and their attempts at conformity. They were considered the experts, which is probably why we had so many problems with counselors. I've never believed in conformity for conformity sake.
LOL maybe because they are XD
Tbf I'm glad Allism Speaks is sticking with the puzzle piece. It's nice to have a recognizable symbol so it's easier to know who to be cautious around. (I'm not saying they're all bad people, but when someone's views on autism are informed by AS I think it's safer to keep your guard up.)
Love the rename
I am autistic and have a puzzle piece tattoo but I think autism speaks is full of shit... When I got the tattoo I had never even heard of autism speaks but a tattoo shop was raising money for autism awareness by selling puzzle piece tattoos so I got one cuz I thought it was just a symbol for having autism
@@markb4790 totally fair. I try not to make assumptions about tattoos. There can be so many reasons why people get them. I think most people that display the puzzle piece symbol don’t know the history and nuances behind it - I mean, why would they. We’re taught that charities are well meaning.
Had my 11 yr old niece come up to me with a shirt with puzzle pieces all over it, and script saying "im not misbehaving im just autistic"
😬
@@CaitofFate strange message….
The frustrating thing about ABA is that there ARE therapies and coaching sessions that can help people manage the parts of their autism that they're struggling with.
I've been attending coaching at my therapy office, my coach is also autistic and understands exactly what I'm going through. They've been helping me notice where I'm masking and where things like executive dysfunction and demand avoidance are affecting me negatively, and how we can change my environment and situations to help alleviate that stress in a healthier way.
Coaching like this COULD be offered instead of ABA, it helps give autistic people so much more autonomy and freedom to be their own people. And yet here we are.
my diagnosing doctor also offered this! they called it occupational therapy.
I will never forget the time I was browsing around and came across one of Lamb's articles ("Autism Is Never an Excuse to be an Asshole") and discovered that the entire comments section was full of absolute vitriol towards Autistic people. Lamb will occasionally respond to comments on her blog criticizing her, often using the "but I'm autistic, too" as a shield to hide behind. However, she has done nothing about these hateful comments.
She also comes after Autistic teenagers and adults who disagree with her points, and often uses her son as a barrier to hold up, claiming that her (frankly, very harmful) takes on autism are excusable because her son has higher support needs, which is, in my honest opinion, pretty awful.
If you're going to look up that blog post of hers, please be warned that the comments are legitimately hideous, so if you are affected badly by ableism, I wouldn't recommend looking. Stay safe out there
Nothing screams "I'm not confident I can defend against any objections to this video" like turning off the comments; the simple fact that they're not willing to entertain any kind of back-and-forth conversation shows that Eileen's efforts with that video are purely aimed at marketing. At least it's _kind_ of honest - they don't entertain any kind of criticism of their methods whatsoever, so it's entirely on-brand to carry on that strategy.
That absolutely can be the case, but sometimes people are just vitriolic, tbh. Honestly, I think UA-cam as a forum for public discussion is pretty horrible. It can be extremely toxic as a platform, sadly.
I mean it is cowardly and is the first step to get your video taken down.
I have to disagree. People on the internet are emotional and mean. Even if the video spoke true, people would still trash it if the majority believes it sucks. Just look at all the insults game developers get everytime a project doesn't go to plan.
Tbh. Everything she said just sounded like "JuSt TrUsT mE bRo!"
Who
@@FirstnameLastname-jd4uqthe autism speaks lady i assume
@@FirstnameLastname-jd4uq Im not good with remambering names. The one that workes for Autism Speaks.
@@nyapfaar5375 lamb? I'm not sure
@@kathycollins3260 what does lamb mean?
Even the way they phrase their "condemnation" of electric shock was weird, with the addition of the "to reduce self injurious behaviors". I can't think of how the intention would be relevant here unless the point was "he had good intentions he was just going about them the wrong way" which is weird when we're talking about torturing children lol
Right like its not like it's magically okay now if you do it for a different reason
The problem for me about autism speaks is that so many non autistic people have no idea how problematic they are/were. As recently as two years ago I have seen actual mental health professionals wearing the puzzle piece. It’s such a difficult and upsetting thing to have to explain to people who really ought to be able to educate themselves.
I want a "Neurotypicism speaks" video. "I am mediocre interest. I am the lack of out of the box ideas. I am the one who bullies the others. I am the rejecter. I do NOT tolerate if you can't read my mind. I only learn to play the guitar to earn money at weddings." Let me know if anyone wants to produce this video.
I would love it if u make it
I think it has been done before, but another never hurts 😋
@@summerlovinxx I saw one but it was not very true to the "intense voice over a found footage of lonely children" format.
I would.
"I am 99% of the board members of neurodiverse support groups, because I know that everybody else are actually just side-characters without agency who go through life following their scripts. I'm the main character, I have free will."
Her commentary does come across as gaslighting with a lack of acknowledgement of why people dislike them. It looks and sounds like propaganda to me without substance in their refutations.
Ooh! Ooh! You could totaly call the hotline and give them some questions to see what info they give. That would make a great episode.
The “there was an autistic person in the room” reminds me of “I’m not racist, look I have a black friend”
An autistic person was in the room when the decision was made about the puzzle piece. It doesn't mean that they had any input in the decision. I have been in many rooms when decisions were made but it doesnt mean that I was involved or even part of the conversation.
The fact that she makes it sound like having an autistic people in a room makes bad decisions OK just shows that she doesn't feel that decisions about autistic people should be the ones making decisions about autistic people and she feels that a token person in a room is enough
I would say to them: "Speak for yourself. Leave me out of it."
Autism Speaks
Fine print: for parents of autistic kids
I have been with my partner since 1985, married since 1990, have 2 adult daughters, both diagnosed - one at age 2 the other age 31 and I have my assessment scheduled for next month at age 60. Divorce is not inevitable!
There's still time, you haven't had your diagnosis yet. (Joking)
I will never forget how Autism Speaks essentially encouraged medicating and training your child like a dog or a monkey, and considered the child _heavily masking_ to be "the cure!" Oh, right, I won't forget them trying to convince parents there's a cure. For... a not-disease?
Hey, I know you’ll probably never see this, but you are the reason I explored an autism diagnosis. Less than a year ago I got diagnosed, and I just want to thank you.
Thank you so much for sharing this with me! Congratulations on your diagnosis and I'm so so glad I could help 💛
@@imautisticnowwhat why can't autism $pecks just get shut down and charge them for the harm they have cuased??
Hey, I’m getting assessed in less than two months! Excited and nervous! 😅 Congrats on your diagnosis! 🥳
@@misspatvandriverlady7555 I hope it goes well for you! I was just diagnosed earlier this year. And while I can't say "you are the reason", I can say, Meg, that you played a roll. So I second the thanks. Also for what sounds like the torturous process of preparing this video... I hope you recover well from that, and that it serves to save a lot of pain for a lot of other people.
@@misspatvandriverlady7555I just got assess last week don’t worry you’ll be okay
sounds like the company is balancing a fine line between rebranding and just flat out gaslighting us for saying they are evidently awful.
Lamb seems like a marketing strategy move and an attempted counterweight to the many autistic youtubers who are gaining more and more of an audience.
I also definitely agree with the gaslighting comment. All of the things she addressed are issues many autistics have a problem with, but none of them are THE actual problem. This can cause people to start feeling like "eh maybe I shouldn't be so harsh on them" because what she says sounds 'okay'. "No painful devices should ever be used in the treatment of autistic people", well yay, right? Who could disagree? But wait, what do you mean 'treatment'? Just because we're autistic doesn't mean we need 'treatment'. But that's carefully being disappeared from view. They're not looking for a cure anymore, but they still want 'treatment'. Gee thanks.
@@AsaTorell all they did was hire a person to tell us we are wrong in yet another way
@@mattdobbs1266 that is absolutely how this comes across.
@@AsaTorell nothing more cringe than that lol
Nope not even balancing they are 100% gaslighting us
For an autistic person, Eileen's videos have very strong "I'm not racist, I have a black friend" vibes.
"Let us know in the comments" with comments turned off by now suggests they did get feedback, but didn't like Autism speaking, so they stopped that from happening.
I only just started the video, but yes, they are. Maybe they’re getting better, and that’s great, but they have a LOT to change and make up for.
Edit: ok, nope. Calling people’s valid criticisms “misconceptions” is 100% gaslighting. Own up and change, most people will accept it eventually.
"We're Nazis! Give us another try: we have *cookies* now!"
Nope.
It's so strange to hear these fully grown adults be like "We're not gonna change, but you should still look at us differently and forgive us for everything we've done (without even saying whether they'd do it again)
Even if they did change something in the past they aren't even acknowledging that they did and want us to believe that it's always been that way.
So they want us to think they've always been good and we've always been wrong about them? Even if we can fact check and see that they're wrong? Maybe they just really haven't met anyone who's autistic before.
And then they give reasons that all boil down to "I know people who are autistic so I can't be ableist"
They've stopped at nothing to become better people, and stayed there. Now they want to be rewarded for all the hard work they want us to act like they've done, regardless of the fact that they haven't actually done anything. And somehow it's our moral and mental failing if we don't congratulate them for all the changes they haven't made and forgive them for all the wrongdoings they have done nothing to make amends for, haven't apologized for, and are continuing to actively perpetrate against us.
Remind me again why we're the ones in this situation who are considered not to understand social dynamics? Why we are the ones who are deemed to have inappropriate emotional responses to situations? Why we are the ones who get labeled as disordered?
true.
i’m currently taking a undergrad/grad course on autism, and aba wasn’t mentioned by name, but one of the ‘evidence-based practices’ we learned included that 20-40 hours per week. i left a comment in the forum about how ridiculous subjecting a child to that is (who knows how many people read it). one of the links describing something we were learning was to an autism speaks site, and it seriously affected my trust in the class. i’m the only person with autism in the course and one of two people with adhd. i hope nothing else comes up, but it’s nice to be on channels like this and feel supported regardless of what certain sources have to say about me and my autistic peers
Every time Eileen said something my mind was like "ALERT: CITATION NEEDED".
There’s nothing wrong with trying to reform Autism Speaks; progress is good! But them acting as if they’ve done no wrong and that we’re all just “confused”, especially with that ‘mind your misconceptions’ video, does nothing except further our community’s already strong distain for and mistrust of Autism Speaks. The best way for them to have, or to continue going about this, would have been/is to acknowledge their past ableism, harm, recognize it as harmful, and show through the their ACTIONS that they are evolving as an organization and actively working to do better. Much like that one article they wrote acknowledging their past and apologizing for it, but maybe in video form? Because Eileen’s video definitely went about it poorly, lol
Yes. Lying once means a group is willing to lie: therefore they can't be trusted without good evidence. They'll need to do more then state that they're doing unspecified things they consider good.
@@Isaac-hm6ih Agreed
True. It is condescending.
You can't reform an apple that's rotten to the core
If they where serious they would have just down and opened a new charity with entirely new concepts, but nah they'd rather continue eugenetics research and pay their CEO 14x the median national wage
I think the only way Autism Speaks can successfully rebrand itself is to go all in on education and advocacy. Basically to become something they’re not. Meg does a fantastic job here highlighting just how fundamentally problematic the organization still is.
Like I was thinking if they're that different why not just start over as a new organisation? Use the money they have and start over with a new brand and new people (key being NOT just the same people, a few people who knew or actually changed to realise that it was so problematic, and then NEW people who actually care)
@@concerninghobbits5536 i was literally thinking the same thing. they need to ditch the name, they clearly don't speak for us.
@@isacami25 watching more of the video it sounds like that's what the one British organisation she mentioned did. They knew the name didn't represent them anymore. Different but the Chatime boba tea shops in Minnesota rebranded to Niko Niko because someone bought all the franchises and decided they don't wanna be tied to the global brand, that way you know it's local and independent.
Better to scrap Autism Speaks altogether and work with an entirely dofferent org that already does good work.
As an older person, I definitely remember "light it up blue" being associated with the idea that autism was primarily found in boys/men. Whether that was the official position I don't know, but I don't trust AS to give the unvarnished truth about themselves.
“People have all these misconceptions because that IS how we meant it back then but now we’ve learned to hide it a bit better so we can claim we don’t mean it that way at all!”
If they've changed I'd rather they just dissolve and start a new organisation with new people and new ideas. They could have done a complete 180 and be the best organisation ever but they still have that bad association so it seems dumb to not just be a new thing unless they haven't actually changed.
Precisely
This screams of spin to me. I would love to know if they’ve been losing support in recent years, if that perhaps they’re desperately trying to rebrand themselves because of that.
Although I’ve never been in official ABA therapy, I was raised in a religious setting that had a very similar attitude. Everyone MUST be made to conform, to behave the way they think is acceptable, and they would use ostracism, humiliation, and insidiously abusive language to enforce it. I can’t support any group that encourages behavioural modification via negative reinforcement.
Just did a quick glance at their annual financial reports over the last decade. The company's net assets went from about $8 million in 2014 to $53 million in 2021. It does appear that the last 2 years have seen a decline in revenue with an increase in spending for net losses leaving them at around $42 million for 2023. They sure seem to deal with a lot of in-kind (not money) contributions, though.
In a rational world these clowns would lose their charity status and pay their damn taxes.
ABA therapy sounds like what parents/adults keep trying to do to "difficult kids", aka undiagnosed autistics. It's not fun.
As a Polish person I was really impressed by your pronunciation, I think you're really close to sounding like native, wow!
One of the biggest issues I have with ABA is the lack of control the autistic person has in it. Even beyond the idea of “therapists” dismissing something harmless is harmful. Like I bite myself sometimes which I’m sure would be considered harmful behavior, but I personally am ok with it. I think going through a process of training that behavior out of me would cause more harm than good. I think working with an autistic person to try and limit harmful behaviors is okay, but it needs to be a process that the autistic person has full control over, and from what I’ve seen ABA doesn’t give people that level of autonomy.
I agree. It seems like a lot of behaviors get pathologized if they appear in autistic people that otherwise would be brushed off. I don't know if I'm ND but I was raised NT and yeah I bit myself too because I liked the bite patterns on my arm. No one pulled my parents aside and said how "concerned" they were for me, it was just normal kid stuff. Autistic people often say they feel like aliens and I can't help wondering if part of it is because our society treats them that way.
Same! I used to bite my knuckles, and it was a very deliberate action I used to control my needle phobia by introducing a stronger physical stimulus that I was in control of.
I was punished for doing that and trained to stop, and the phobia got worse. It took four technicians to hold me down to get an IV into me prior to wisdom tooth extraction. I would melt down or pass out. And of course, was punished for that, too.
Just recently it occurred to me that I'm a grown-ass adult now, and if I'm allowed to have spaghetti for breakfast, I can also bite my knuckle during a blood draw if I freaking want to.
Astoundingly, I neither melted down nor passed out.
Could have been doing that for the last twenty years and not needing several days to emotionally recover from every vaccination, but no, it was weird and bad and wrong, because what if I broke skin??!! (I literally never did, not even once.)
Pathologization of neutral behaviors that simply fall outside of statistical norms is such an issue. Honestly, I'm inclined to say that the overwhelming desire to link difference with illness is itself pathological.
When I get really upset I get the feeling I need to bite my back of my hand. It calms me and I never heard of anyone else biting.
I bit the inside of my cheeks and skin pick. My son takes picking to a new level and digs chunks out of his arms. It helps him stay calm he says.
@@quiestinliteris Yep.
And yes! The JRC STILL shocks children. And it’s still legal!
It is still legal in the US to pay disabled workers less than minimum wage, with goodwill being a main culprit of doing so, it’s still legal and in 4 states unregulated to restrain and seclude children with disabilities using mechanical and physical restraints. Disabled people are still treated as less than human.
That video in a nutshell: People say that we do this thing. We don't. We absolutely do not, and I have no idea where people get the claim from.
Probably not the best structure they could've chosen. It would've probably been better to follow up the claim with reasons behind the claim, then use those details to find a counter claim, in the process acknowledging past mistakes and talking about changing approaches.
Of course, it won't make them look innocent, but it would send a message of them just being human and in the process of learning and figuring out new and better approaches to everything.
Teaching people to think twice before donating to charities is bad for business, but not doing it is bad for the world overall.
I would point out that you can't say Tony H. is autistic. You can only say he's an autistic advocate because it's possible to be an advocate without being a member of the community.
True!
Before I saw that commercial, I interpreted the puzzle piece as "the missing piece" of MY problems, that didn't make sense to me my entire life. I was misdiagnosed with SOOO many fucked up things, none of which actually helped.
Autism was the missing piece of my puzzle.
I’ve got my diagnosis of ASD when I was Young, The piece is what completed me, i’ve been just adding more pieces onto it.
It's original meaning was that there's a piece missing in autistic people. It was always shown as a missing piece. Their website back in 2007/8 made it very clear they considered people with autism to be defective and their goal in existing was to find ways to make autistic people conform to traditional behavior.
Yeah, I thought something like this too (I am neirotypical, though, I probably have CPTSD, so I can relate A LOT to missing puzzle)
@@Valeria-sx7uv psst just so you know, CPTSD can be considered neurodivergent. Youd be an allistic neurodivergent person :)
For AS the Puzzle piece is the missing piece they need as a brigding piece to justify their dehumanizing of all Autists, no matter what level on the spectrum their are.
this was a really well-balanced, clear-eyed and honest look at Autism Speaks and I appreciate the research that went into it
14 yr old girl Autistic\adhd person here and I agree with you, Autism Speaks sucks so much!!, Thank you so much for making this video for people with autism and different disabilities😊
The new logo should be a fingerprint*, to represent that we are all unique and that it is a non-linear spectrum
*This is not my idea - it was Kaelynn - I am just trying to spread an idea which I love
I love that idea!
I like that idea!
I have personally used the rainbow infinity symbol - another non-linear spectrum idea - in reports for grad school (Counseling Psychology). One of my classmates wanted to use the puzzle piece in the first report we did a few years back, and I said, um, NO!
I like the idea of a fingerprint. I see it as representing that individuality, as you mention. I also get that genetic information creates certain patterns, but each pattern is similar in some overall ways - we all have fingerprints - but different in important details. Also, importantly, all people have fingerprints, including allistics well as autistics. There’s no idea that something is “missing” from autistic people.
Thanks for sharing this idea! I love that there are more options out there. :)
@@DawnDavidson Yes! I love the way you explain the significance of the fingerprint. I wasn't sure how to put my ideas into words but you did perfectly. ❤️
I don’t like the fingerprint. It’s just kinda boring, and the entire point of a fingerprint is to be unique. But if we made a fingerprint the autism logo, we’d have to standardize the fingerprint. It’s the kind of thing that sounds good in theory but in practice it doesn’t work
They spent more on their web site than they did helping actual autistic people. Ayup.
540k for the ceo is criminal
Although the first autism diagnosis in my family occurred more than 30 years ago, I'd never heard of Autism Speaks or ABA until about 8-ish years. But then, I'm not American and none of my family ever had ABA.
When I DID hear about them, and looked into the information about them, I was utterly appalled. I wasn't shocked (no pun intended) that such practices had existed, given my knowledge of so-called 'treatments' inflicted over the centuries on people with mental health issues, disabilities, and/or those whose behaviours or beliefs were considered unacceptable by society, by the church and other institutions, or even by families. What shocked me was that it was still happening in the late 20th and early 21st centuries, in order to 'extinguish' unwanted behaviours, no matter how harmless those behaviours were. In other words, if they couldn't eradicate autism, or 'cure' it, they wanted to force autists to at least pretend that they weren't autistic, to behave as if they were neurotypical no matter the cost. It didn't matter how invalidating, painful, stressful, and/or harmful to us such pretences often were - as long as the neurotypicals were comfortable.
In order to convince me that they've genuinely changed their stance, and they're not just trying to rebrand themselves and sweep the past under the rug, they'd need to do several things.
First, admit that their previous attitudes, beliefs, and goals were mistaken, unbalanced, at best unhelpful, and not infrequently actually harmful to autists. No matter what their actual intentions were, even if I granted them every benefit of the doubt, they advocated and supported things that harmed many autists mentally, emotionally, and physically.
Next, apologise. Actually say they're sorry they did those things.
Lastly, assure us that they've changed their policies and practices - and clearly demonstrate those changes. They need to be transparent, to give actual figures of the numbers/percentages of autists they employ in various positions, including in leadership roles - and what they're doing to strengthen those. Show us in their finances that more of those donated funds are spent on services and support for autists and their families, and on (re)educating the public about the true nature of autism, its challenges, its complexity, its diversity, than they do on things that don't actually help us.
They're talking the good talk now - or at least it seems that they're trying to - but talk is cheap. They need to put their money where their mouth is. Money talks, so they say, and their money speaks louder than their words about what they think is important.
On top of all that, their name is inappropriate. Autism doesn't speak. They don't speak for (most) autists. Our message is still 'nothing about us without us'. By that we do not mean simply permitting us to be present as silent onlookers, while you speak FOR us. Nor do we mean allowing us to speak but invalidating, ignoring, or overriding our voices and then going your own merry way. We mean actually hearing us, paying attention, addressing our concerns, then demonstrating how you're actively working to meet the needs, and improve the lives, of autists and their families.
Anybody, anywhere who thinks an autistic person of any age would benefit from treatment like that given by ABA should not be let anywhere near an autistic person. They use the same approach I used to train our dog. It works on a dog. He's happy and safe when we go for walks. I would not be surprised that a child sent to an ABA treatment centre would emerge being more needful of more care than what they would have been if they'd never heard of ABA. I do believe that most problems adult autistic people have are caused by having had to be in 'hostile' environments as children - school, for instance, or even any kind of event where the child was not told where, what and when before going. Of course, if a parent doesn't know about autism or that they have an autistic child, they might cause damage by inadvertence. Perhaps all children should be screened for autism like they are screened for other things such as talking or sitting alone or walking or deafness, etc at the earliest possible age and then parents could be given a how-to handbook on how to best navigate the world with their autistic child. This would hopefully prevent so many autistic adults finding out later in life that there is actually nothing wrong with them. It would make it possible for autistic people to focus more on their assets rather than on the downside of living in a neurotypical world.
I think Autism Speaks is just another money-making company where the money is what matters, not autistic people. They prey on parents of autistic children, giving them the notion that they 'will mend their child' or make the child less embarrassing in public or make the child 'seem normal'. The fact that the CEO makes more than what is used for actual stuff related to autism says it all. Also, if I was going to call a help line for autistic people, I definitely would want to talk with an autistic person and not some neurotypical who has 'studied' autism....
Even dog training has evolved so that a lot of what ABA does isn't considered best practice for training a dog anymore.
I actually read a short blog post on the neuroclastic about a professional dog trainer who hates when dog training is compared to ABA because the way he trains his dogs is far more humane, compassionate, and more strongly prioritizes physical and emotional wellbeing.
@@LilChuunosuke Yes, I can see where using all of ABA methods over the years would be cruel, but the whole thing of giving the dog a pat on the head every time he sits when asked (we use that off leash if we hear a car coming), many "good boy"s whenever he does what he is asked to do, are what I'm talking about. A stern word or sending him to his bed gets the message across when he is caught misbehaving (loved socks when he was younger). Those two behaviour modification approaches are what remind me of ABA, but they push it to a cruel extreme. I have raised children and learned that understanding them as individuals and then working with them is a lot healthier and effective than a pat on the head or sending them to their room whenever the parent feels the child has performed well.
@@amandamandamands no indeed, positive reinforcement only for dogs
Uhhhh you are mistreating your dog incredibly hard if you used aba style "training" on them what the fuck, please never own a dog again
It's absolutely crazy to me you recognise how bad it is and then use it on your dog wtf
Every dog trainer worth their salt will tell you that the only thing you need is positive reinforcement, not torture
Their video is so defensive which immediately makes me switch off. It's like they are saying 'actually your perception of us is wrong, it's your fault'. How rude. I would rather they actually be a better organisation and support things that would help, than spend time and resources making a defense video. Actions speak louder than words right?
When someone is this defensive, I start feeling suspicious about their intentions.
She started that video with a lie because it is actually quite literally her job to convince people to support autism speaks. Started with a lie doesn't make me want to listen to the rest of her points. Thank you for discussing this.
I have an issue with boards of directors being filled with people who are not directly impacted by the by the decisions they make
Hey so this is kind of unrelated to the video, but I would just like to thank you so much for all the information you've given about autism. I finally got diagnosed 3 days ago, and it just feels so overwhelming yet liberating. I'm so glad I have an answer now for just the way I have been my entire life (it honestly probably saved my life, finding out about autism), and you contributed a lot to that discovery.
Again, thank you so much, you have helped me more than I could ever articulate. You truly are an amazing creator, and have helped so many of us discover ourselves, and you deserve all the success you have gotten and more!
Congratulations on your diagnosis! I'm so happy for you. It is a huge mix of emotions, I agree. I'm so glad I could help a little 🥰 Thank you for sharing this with me! 💛
Congrats!!
Congrats on your diagnosis, wishing you all the best 🥰
Good to hear. I just found out I'm up for assesment in the first week of August.
I understand how finding out you are autistic can save someone's life all too well. I'm happy that you got your answer and that you can have that weight lifted off your shoulders. I've got a big long comment coming through because I can't stop myself from oversharing (it's how I show empathy) and don't know how to be concise, but hey, that's why they (certainly not my professors) love me. (includes hints of existentialism and past feelings of shame)
A lot of my depressive symptoms before finding out I was autistic came from a place of frustrated confusion, of not understanding why I couldn't just be like everyone else so that life could be easier for me and those around me. I couldn't understand why I couldn't feel that I belonged. At the time, I really thought my existence in this world was a clerical error and that the powers that be had placed me in the wrong universe.
The online autistic community saved me; I love who I am, and autism is the framework from which my identity was built; there is nothing inherently negative or harmful about my disposition, it's just that people are ignorant of my difference and how it compares to their experience of being human. In any case, it's creators, like Megan, who made me feel like it was finally safe enough for me to let go of all the external shame that I'd internalized and had been slowly eating away at me throughout my childhood and adolescence.
The younger generation needs to be informed about neurodivergence, what it can look like, and what tools you can use to manage what comes with it (even if they end up not being autistic or nd, the tools that we push, e.g., for emotion regulation or other things may still help those looking for strategies to help with their specific concerns). After exposure follows destigmatization, and with that, less dismissal of the signs people see in themselves and their children.
I truly hope that we can transition to a world where both those with visible and invisible disability are considered in its infrastructure so that the word disability wouldn't apply to them anymore (seeing as they would no longer be at a relative disadvantage). I know this hope is super idealistic, but this sentiment must be felt if we want change to happen, so choose to share it with anyone who will listen.
I appreciate creators in this space so much for spreading awareness and allowing us to take respite in this safe, comfy corner of the internet. I can't even begin to articulate how seen I feel by their efforts.
The reasoning she uses for each point is just so weird, and would be seen as hugely offensive when replacing 'autistic people' with any other marginalised community. I don't trust Autism Speaks and I don't think I ever will. Thanks for covering this, Meg!
Honestly, normally I'm skeptical about language apps, but I'm impressed that you could even pronounce those Polish sentences. When I see Polish, I just think "so this is what dyslexia is like".
It sure is
What would make the first section a LOT more believable is if she ACKNOWLEDGED why Autism Speaks is perceived as a hate group and what has changed, and ideally admitted it WAS a hate group.
I find Eileen's tone to be really condescending.
Also, completely dishonest of her to invite people's comments and then allow comments to be switched off.
Agreed. Hope she doesn't talk to her autistic kid that way. I'm probably lower support needs than her kid but I've had ppl talk down to me that way, can't imagine what it's like for him 😒
To be entirely fair to Eileen Lamb, it's possible that bc English isn't her native language (I'm assuming here tho, correct me if I'm wrong) there's some kind of "lost in translation" thing going on here. Ppl modulate their voices differently in some languages, it can be confusing if ur language doesn't do that, or give certain connotations to the listener that the speaker didn't intend. Like how in English there's a difference between saying "Don't DO that!" and "Don't do THAT!" but not every language does that.
......I still don't like her tho lol 😅
@@bbo7002Its a language thing, i speak french and native french speakers tend to sound like that when speaking english!Tho obviously not all
Still doesnt make her a good person tho💀🙏
@@NisaWisa-bx7gz Ok, that makes sense! I won't hate on her accent, it's not her fault......unlike her support for autism Speaks 😒
Thanks for the info btw! 🙂 🙏
@@bbo7002 You are very much welcome! :DD
Have a great rest of your day fellow autistic :3
I'm not sure Tony H is autistic- an advocate is someone who speaks on behalf of others, so he could be an advocate who speaks on behalf of autistic people or an advocate who is also autistic. It's hard to tell which from how it's written.
I was too optimistic, I think!
I’m currently unemployed, and backed out of applying for a job with Autism Speaks. The job listing did not mention them. I had to go several steps in to discover it was for them. I could not, in good conscience, work for a company that still promotes ABA therapy. Thank you for exposing the truth about them!
Honestly, the thing that irks me the most is that there’s no apology. There’s not apology for the harm they’ve done or anything, it’s more like they’re gaslighting us into thinking “oh we never did this, what’re you talking about, just shut up and we will “help you”, whether you like it or not.”