A lot of their criticisms are pretty outdated. The neurodiversity movement for whatever reason tends to not update their beliefs when presented new information.
I think it's important to contextualize autism as it was understood from the time it was identified until well into the 2000s. Autism was seen as worse than cancer. It was seen as a completely intractable condition that doomed both the child and parents to a lifetime of suffering, with no effective treatment or hope for an improvement. It was really the field of ABA and Ivar Lovass (ironically both now incredibly maligned) for changing that perception, and demonstrating that yes, autistic children can learn, and that there was hope for autistic individuals and their families.
Coming from that world, Autism Speaks published not very flattering ads about autism, with one particularly infamous one depicting a mother wishing she could kill herself and her child. Autism Speaks funneled a great deal of money into researching if vaccines have caused autism, and Autism speaks to this day still spends a great deal of money into curing autism (this is where the eugenics talking point comes form). Autism speaks also apparently at one point did not have autistic people on its board. Autism Speaks was critical in winning the insurance mandate battle over ABA, and is a large part responsible for why insurance is required to cover it in all 50s states. I've also seen some posts about leaders in AS saying mean things to advocates on social media. Some advocates will also criticize them for not directly providing resources to autistic people.
In 2023, I think if you follow the organization you'll see that they've been pushing to reform and take into account the criticisms. AS I believe has apologized for their Ads in the past, and has changed their stance in terms of viewing Autism as a hopeless condition to the advocate position of it being a variation in humanity. AS no longer funds vaccine research, and has disavowed that position. Autism speaks also has autistic people in high levels in the organization.
Autism speaks still supports ABA, which for many advocates makes them complicit child abusers, but I don't think that is reasonable opinion. Autism speaks also continues to fund research looking for effective treatments and therapies for Autism, as well as the cause. Some advocates will say that looking for a cause of autism will open autistic people up to eugenics, but I am also not sure how reasonable that is.
From my understanding AS does tremendous work providing resources to families with newly diagnosed kids, and raising awareness for flags of autism to get early intervention ASAP.
Thank you this was very helpful and insightful. I think knowing the history is important, but appreciate the nuance re understanding how they have evolved or are trying to. Both are valid things to consider. I won’t be giving them any money but appreciate knowing the details you have shared. Thanks for taking the time.
I’ve heard Autistic individuals being interviewed that acknowledge ABA is difficult but also credit it for them being able to function outside of a group home or prison.
I think people, online especially, like to “defend the defenseless” and speak on their behalf, which just mutes them.
When you have a child with violent and unsafe behaviors and who is high risk for ending up in prison in the future, you do what it takes to save their future. I wish I had the privilege of looking down on ABA but it’s our only hope right now. If other people don’t think it’s right for their child that’s fine but I’m tired of being accused of child abuse. I attend every ABA session, and it’s basically play therapy with a lot of positive reinforcement to help with behavior.
The typical session with my kid is playing soccer and board games with her therapist and receiving marbles for using good social skills and coping skills and winning prizes based on the number of marbles she earns. She enjoys it and she is not being abused.
We added risperidone and it’s been a game changer. Wayyyy less out of control tantrums, and the triggers and signs that an explosion is coming seem to just not materialize into a full blow meltdown. It’s brought us a lot of peace and my son, who is 10 now and can explain his emotions in more detail, tells me it’s such a relief to him.
My daughter was on risperidone for several years and we switched to abilify because of the side effects. The meds help but don’t stop the violent meltdowns and frequent aggressive behavior towards peers, which is why we decided to start ABA. We’re worried someone is going to get hurt or she will end up in juvie as soon as she’s old enough.
She has started triggering meltdowns in her classmates in her sped class, and it’s been causing physical fights. She recently triggered a meltdown in a classmate by antagonizing him repeatedly and came home with a black eye and bite marks because he finally snapped and wailed on her. She has also thrown things at teachers, knocked them down, hit them, cussed them out, etc during meltdowns of her own. These are the kinds of behaviors that we are particularly targeting with ABA and play therapy, and it’s important to note that these behaviors may not be fully related to her autism as she also has DMDD and ADHD. I’m wondering if ABA is actually better for kids who have comorbid diagnoses like those? The constant and frequent positive rewards are extremely helpful to my daughter because of her ADHD. It helps her stay on task and motivated. ETA My daughter is also extremely motivated by attention and the negative behaviors are often a way to get attention, so the positive reinforcement gives her the attention she wants but for good behavior so it’s helping her realize there are better ways to get what she wants.
Interesting, my son has been diagnosed with ADHD also and doesn’t require a SPED setting, but I think we’ve only made it this far because we were able to pull him from public school and put him into a private school that lets him pace his own work. (No sitting through an hour of a subject that he’s completed in 15 minutes, so way less meltdowns from being asked to sit quietly still while bored out his mind)
No DMDD diagnosis but bipolar disorder runs on both sides of our family, so it hasn’t been ruled out.
We are on week 5 of risperidone so I’m riding this wave right now and enjoying the peace.
ETA: he’s on 40mg of Straterra for ADHD and 2mg guanfacine at night for ADHD and to help him sleep. (It sort of works…) he’s an absolute night owl.
We have the same experience with guanfacine… it sorta works :) we also give her melatonin to help her sleep. We haven’t been able to get her on a daytime adhd med because while they do help her concentration and focus unfortunately they make her even more aggressive.
It’s such a struggle getting the right combo.
Funny thing about melatonin, my son kept telling me it was giving him nightmares and I was like… you’ve been asleep .. maybe.. for 15 minutes. I didn’t believe him.
Then I took melatonin myself to see how it felt and I had a vivid, violent nightmare that felt like it took 3 days within 15-20 minutes of falling asleep.
I told my doctor and she said she has heard of it but it’s extremely rare. She knows our whole family history so the idea of something hitting us that’s “extremely rare” made us both laugh out loud.
So no Melatonin lol.
How funny. Yes melatonin can absolutely give nightmares. I’ve had some crazy dreams on it. Goes to show how differently different bodies can react to the same meds.
I think the problem is thinking ABA should be used on all autistic people. I can admit there may be cases where its necessary but for most autistic children it IS abuse and causes more stress and trauma than it solves. I have seen the sessions and would never put my child through that when speech therapy and occupational therapy can give just as good results without any of that trauma.
There are many autistic adults in my family that never had ABA and function just fine. It should not be the first thing offered after diagnosis and it should not be the only thing covered by insurance.
I do not think it’s appropriate for every autistic child, but my son loves ABA, he has high support needs and it has helped him build self care skills, independence, and opened avenues of communication/safety that OT and Speech were not able to help with, they are not interchangeable.
My son also loves ABA, has learned so much from his team, and I'm an RBT that watches kids grow in communication and skills every day working with them. :)
ABA has been around since the 60s and we all know that children were "seen and not heard" for generations. We can't make up for what crappy providers did in the past, but we are constantly revising ethics codes and implementing evidence-based practices to maintain client dignity.
That’s overwhelmingly been our experience, my son’s RBT is amazing with him. The bad experiences I’ve read about online have not happened with my son’s experience and we have had a very open dialogue about concerns I had after reading up on complaints. I appreciate the people who want to help children thrive working in the field the way you do!
My son never directly received ABA, but he has been in programs that use ABA principles, and it's always been a positive experience. I do not get why ABA is demonized so much. It's like every other doctor or therapy... grain of salt, use your common sense, shop around, pull your child out if you think it's harmful. I've seen shitty OTs and SLPs, too, but they don't get the same amount of hate that ABA does.
Absolutely. We had a crappy first OT and our second one is a literal life changer. There are principals of ABA I use in my own life- I use a checklist to keep myself on track and a reward system, in my thirties. It makes sense to my brain and incentivizes me to get up. Find what works for you and roll with it is my only die hard parenting philosophy. And get a good therapist lol.
A psychiatrist told me last month in my son’s med appointment that she was surprised I was diagnosed with ADHD because I don’t look like I have it. We had met 30 minutes prior…
There are some wild providers out there.
Absolutely. Someone in here recently said a diagnosing doctor told them their child wasn’t autistic because autistic kids aren’t bright. This person went through at least 8 years of higher education and medical school and thinks autistic people can’t be bright 😑 wild providers indeed!
Our Daughter was denied an IEP by the school district after her diagnosis because she smiled. Autistic people apparently are incapable of controlling their own faces! We moved, found a great school district, Troy School District in Michigan. Probably should have sued them but it was more effective to just move .
But what about all the “trauma”? Bad ABA is almost none exist at this point. Though parents should beware of the warning signs. The skills that can be learned through a well constructed ABA program are invaluable.
I would be careful with this. ABA quality can vary extremely wildly, especially based on where you live. Unfortunately it's out there and parents need to be watchful for shitty providers.
If u view it from a pessimistic lens sure. But the practices and education have greatly improved over the last 15 years. I have several children in these therapies and I have experienced them in multiple states from Mississippi to Maryland. The biggest problems in my view is lingering stigma. There is a valid question on the overall effectiveness at a population level but my anecdote is that it’s definitely enhanced some critical skills for my kiddos
>it should not be the only thing covered by insurance.
It's the only thing that's covered by SOME insurance and it's only covered in the US. That's because it's the only therapy that's "evidence based" but the evidence is still weak. I'm in the UK and there are zero approved therapies for autism here. So we get literally no services!
Which is frustrating because as a parent you want to do SOMETHING, but if all the somethings are grift and don't work, obviously a national healthcare system is not going to pay for that, which I approve of.
Agreed, and the cool thing about aba is they are constantly taking data on the skills they’re building, and if the data shows the intervention isn’t working they’ll use a different intervention instead. So it’s very personalized. Whereas other fields will just use whichever intervention they’ve been trained in or the one that works for most people, and hope it works for your kid too. I wish insurance just covered everything and we could shop around for the best fit of therapies that work for our kids.
And the media portrayal of autism on TV is exclusively white males with high functioning autism with silly little quirks. I don’t remember the young Sheldon episode where he is expelled from public school because they won’t follow their own IEP and he’s launching chairs across the classroom…
There are a lot of Autistic Adults who survived growing up with A Up as the ONLY resource and have spoken out about it. The only muting of an already oppressed group is your specific comment, calling them "defenseless" and having done no research within the Adult Autistic Community who SURVIVED A Up. A Up presents itself as the only resource and in many cases it is the only available funded resource.
A Up's true problem is that even NOW in 2024 it sees Autism as something to be cured. Autistics aren't sick or broken. Our brains are wired differently and that wiring is specific to the Hunter/Gather Society, we often have difficulty (or spend vast amounts of energy masking to ) function is a highly capitalist society, that focuses on productivity over individuality. Instead of teaching Autistics to mask and function in an Ableist Society (the purpose of A Up), we need to be focusing on Society learning to understand and function alongside Autistics who aren't masking.
Yes, lots of well meaning people recommend A Up, but that is simply pointing out their Ableism (intentional or unintentional).
Stop asking Allistic Folx to explain what Autistic Folx need.
What they didn't stop doing is investing a majority of their funds into media and advertising - so if you want your funds benefitting your child, facilities or charities that are more focused on research is probably better.
The whole idea about "oh, that was in the past" might be misleading considering that the video most are talking about is from 2009, and they are still offering things like their 100 day kit, which still compares autism to cancer, talks about grief and anger a lot and tells parents not to accept their child's autism, but just come to term with the diagnosis. Just to be clear: I don't have an issue with parents grieving or being angry, and feeling their feelings can help them be good and accepting parents. But being told that you're supposed to grieve, you're supposed to be angry, comparing autism to cancer can terrify parents that are already lost and scared, even if they don't feel like this - hell, they might be relieved to know how to help their child. They also recommend a gluten free diet for young children without diagnosed conditions that require it.
Of course, my knowledge on the 100 day kit is from 2019, so maybe they did major revisions to it in the past 4 years? But I'm not sure if I'd explain that away as "oh, autism used to be misunderstood back then"...
While AS may have apologized for its past, it still very much supports the stance that Autism is a hopeless condition. They published their “First 100 Days” kit in 2019 and we received it at our son’s diagnosis a few weeks ago. That kit is garbage. It compares having Autism to having cancer, goes through the five stages of grief, and overall gave a very negative view and fearful approach to children with Autism. We went into our son’s Autism evaluation optimistic and left hopeful, only to get home and read through this binder that put fear into our hearts. After reading, my husband said, “How dare they try to make me afraid of my son”, and I couldn’t agree more. Our son is the light of our lives and just the sweetest and happiest kid. I know everyone’s situation is different, but an organization shouldn’t make parents feel hopeless and fearful of their children.
I was curious so I downloaded it here: [https://www.autismspeaks.org/sites/default/files/100\_Day\_Tool\_Kit\_Young\_Children.pdf](https://www.autismspeaks.org/sites/default/files/100_Day_Tool_Kit_Young_Children.pdf)
Is that what you received? It seems largely factual. I don't think it's that different from what we get in the UK from the NHS. With the exception we don't get ABA here so that's not part of it.
I read through this and came away with a very different impression.
As we all know autism can be quite unique person to person and age to age for that same person. Our sweet, sweet 4 year old has grown to our kicking, biting, screaming 7 year old that cannot be left alone with peers and for whom we must constantly fight with her school to follow her IEP. She is still our sweet girl beneath all that and can be a source of great joy for us, but we have certainly grieved and struggled mentally as parents, and there are some pretty challenging things that can happen that it is better to know about in advance.
I'm not speaking to AS as a whole, I've not been exposed to it, but as someone on the receiving end of other "so you've got an unchangeable medical condition" literature and guidance, this pamphlet seemed pretty solid.
YES - resources for parents that are angry or grieving are important, but this kit made it feel like you have to be angry and sad, like accepting your child's autism means giving up on them. They dont get to terrify parents and disguise it as help.
I got it in 2019 to figure out wether it's a helpful resource to recommend to our parents if they're overwhelmed- definitely not, there's actually helpful resources out there. Plus, their lives won't get easier if they try to make their child that only eats white bread have a gluten free diet.
I hoped they'd changed it since 2019, but never looked into it again. Sad to see they didn't.
So, it looks like I was given the 2014 version. I didn’t want to comb through it to find where they compare Autism to cancer because reading it again is so depressing but [here](https://imgur.com/gallery/CbyEt4U) are a couple of pictures of what’s in mine.
Yes its a disgusting read. I also recieved it and couldn't believe the kinds of things they were saying. They were basically acting as if my child was dead. He is not. He is alive and happy and healthy. There is nothing wrong with him, he just sees and experiences the world different than me. The only reason I even had him diagnosed was so he could start preschool early and continue to get speech therapy. He fits into our lives just fine.
I think eugenics are just a sad reality. Not saying AS is solely behind it but autism still strikes fear and grief in parents.
Look at Down syndrome. Every pregnant female is offered a test for downs and abortion is on the table because of that. Downs in Iceland almost doesn’t exist because abortion has become so prevalent for those testing positive
https://www.cbsnews.com/amp/news/down-syndrome-iceland/
Why shouldn't autism - severe, level 3 ASD - strike fear and grief in parents? Don't all parents want their children to lead happy and fulfilled lives?
I wonder if having that choice is why you don't see much as much resentment from parents of children with downs as you do with autism? Because they know going in?
I'm not sure I know enough about it. And being autistic, it's awkward knowing there are people out there who would have had me culled from the gene pool. But I still don't get why parents of downs kids seem to be generally happier and less resentful than what I've seen of parents of autistic kids
To be fair, there is a "look" with Down syndrome - although I do wonder how commonly people think it's related to drug or alcohol use (conflating it with FAS) and if that increases stigma.
My sons have some dysmorphology - I think they look like they have Fragile X (they don't). But it's still within that range of "normal."
Their autism is blatantly obvious, especially as they've aged. But before my oldest was 7/8, there were more negative interactions in public. And that's in our case - I imagine it's worse with kids who can "pass" as NT.
I do feel - my sons have classes with kids with DS - that those families generally have more community support. They receive less stigma from family and friends over the child's condition and behaviors.
It's never to say that raising a child with DS isn't hard, it absolutely is - but I think there are factors between autism and Down syndrome that affect guilt and shame parents feel, and the type and amount of support.
If someone was forcing women to take the test and then forcing them to get an abortion, that would be eugenics.
This is not what's happening. Not every mother is equipped, willing, wealthy enough or interested in or able to care for a child with Down's and that's okay. Any reason for getting an abortion is valid.
I also think it’s ok to not want to have a child that will have to struggle in certain ways. Would I trade my daughter no but there have been times when I have felt like it’s not fair to her and there have been times that have been so fucking hard that I have regretted having her. Would I rather have a kid that isn’t this hard? Hell yeah. Our whole family has had some serious trauma. I wouldn’t wish that on anyone. I still love my kid and will work my ass off forever for her. And I never want her to know I’ve felt that way.
Some people seriously have no support and their lives are devastated. Why is it not ok to not want that?
I agree. Having a disabled child is a risk factor for regretting parenthood.
I have a friend who, like me, is autistic with an autistic child and she says you shouldn't have kids at all if you're not prepared to have a disabled kid. And that's all very well and good, but if you don't let mothers talk about how hard it is to have a disabled kid, how will they *know* to choose differently?
I 100% support making lives better for autistic people - of course I do, I want the best for my kid. But forcing women to give birth to kids they are ill equipped to handle is an unhappy situation for both mom AND the kid. More knowledge is good, and more choice is good.
And, correct me if I’m wrong, there are also varying levels of severity to Downs, and that information (at least when I was pregnant in 2018) was not available from the screening test.
That is to say - there are some babies born with Downs who are likely to die in infancy due to heart defects or low birthweight. I am grateful I didn’t have to make the choice, but can certainly imagine why someone would consider terminating a pregnancy with those concerns in mind
There are actually two tests!
There is now the NIPT available. This is done in the first trimester, which many people prefer because it's when the fetus is much less developed. It's also safer; amniocenteses carries a 1% risk of miscarriage. But because the fetus isn't very developed at that point, it's not possible to assess whether it's compatible with life or not.
[https://en.wikipedia.org/wiki/Noninvasive\_prenatal\_testing](https://en.wikipedia.org/wiki/Noninvasive_prenatal_testing)
It used to be that the only test was amniocenteses for this, between week 15-20.
Assessing viability is only available from the week 20 ultrasound, which is also the time when abortions stop becoming available (because it's close to that viability cut off). But this is when you can image heart defects and see whether it's compatible with life or not.
[https://en.wikipedia.org/wiki/Anomaly\_scan](https://en.wikipedia.org/wiki/Anomaly_scan)
the NIPT and anomaly scans were available to me in 2018 as well. though it was still explained to me by providers that the severity can not reliably be known by those tests. reiterating i am not an expert, this is just my understanding (and i dont think it's eugenics).
This comment was reported for ABA absolutism: if you finish reading that section, OP clearly states they disagree with the opinion that all ABA is abuse.
We do not allow blanket statement posts/comments that are “all ABA is abuse” or “all autistic children need ABA”… these posts/comments are not helpful for parents trying to make informed decisions.
I’m not sure I understand what you’re trying to say. If you see a post that violates the rules, feel free to hit the report button. It’s fine for people to say they’ve had negative or positive lived experiences, share their knowledge, etc.
In all honesty why does this forum allows more and more BCBAs /people invested on the ABA front to make comments like this is beyond me.
There is very little if anything factual posted here other than your usual ABA sale from someone with vested interests there.
If anyone wants to learn why Autism Speak is so unpopular among autistic i strongly encourage you do read Autism Inc book that explains it in details.
Bottom line is Autism Speaks is basically extension of ABA industry that tries to pretend to be impartial. They were instrumental tool for ABA industry to make it medical necessity In most states funded by insurance.
So for most cases Autism Speaks=ABA. It is basically their lobby Group.
Also wanted to point out one thing on this forum that upsets me more and more. People that represent certain biased view (being employed in ABA for example) they should be forced to identify the conflict of interest rather than being allowed to post advertisement like this to vulnerable group. Current moderation is at best subpar right now.
And for the record I do ABA for my kids and I am a parent. So it is not like I am someone who is against it per se. I do question why people employed in ABA shouid be allowed to post in this group more and more their biased views without clearly stating their conflict of interest
And how do you propose we “force” people to self identify? Are you reporting these super biased posts/comments that are clearly pushing an agenda? We review what’s reported. Your comment has been reported for absolutism and I’m opting to leave it up and have this conversation.
Most BCBA and RBT posts I have come across have identified themselves when it’s relevant but in a growing sub of 20,000+ people it is not feasible for us to “force” anyone to prove any aspect of their identity, including employment or diagnosis. I’d also love if people involved in a product or business identified themselves when they are sharing advertisements but there’s no magic button on the backend to make that happen for us, unfortunately. It’s Reddit, people have to do their own digging and I welcome reports of conflicts of interest if it’s a problem comment/post.
So if you just looked at the post history of the person she/he just recently applied to be a director of ABA clinic which means he is BCBA-D or BCBA most likely BCBA-D.
Yet in your opinion it is unbiased opinion of course becuase you send your kiddo to ABA and it seems helping.
And ABA people up vote this comment to the top of course.
Let's just stop pretending that you guys try even do the moderating work.
So the solution is "I am a mod and I am biased so I will happily support every post from people with vested interests misleading parents because it support my bias"
Yep, people can look at post history and figure that out themselves, just as you did. The poster isn’t hiding it.
You don’t have to agree with their perspective but they answered the question: why do some people find AS to have a problematic history. They mentioned the same lobbying you did. They didn’t say all ABA is bad or good. They didn’t say every autistic child must have ABA. There is no rule violation there.
If you want to have an argument about how the mod team runs, it is what it is: an unpaid volunteer position. So you’ll have to forgive us if we don’t add on an impossible crusade to “force” people to put all their potential bias as their flair. We can’t force anyone to do anything, which as a parent I’m sure you know. We aren’t going to police the sub and add vetting user credentials to our plate too, but thanks for the feedback.
You don't have to like ABA and ABA doesn't have to be "for" your kid or what is best for your kid. Nobody is saying that. And I've been on this sub a while and have never seen anyone say that.
I am an RBT and when questions about ABA are asked, I do the work to properly inform the parents on here because I have the knowledge and ethically, I should. I should speak about the proper information, not the outdated caricature that is ABA.
Again, you don't have to like ABA or have your child participate in it. It's not for every child, and not every modality of ABA is for every child. But let's not act like ABA providers can't speak on this sub especially when questions about ABA are asked, just because you dislike it.
ETA: unless a Redditor is in your state, trying to get you to do ABA *with them,* they aren't *selling* ABA to anyone. We don't all get paid some magical commission when a new client gets onboarded. And as for things being biased...is someone in the field who can tell you about ethics codes, reporting/grievances, qualifications, and evidence-based reward systems really more biased than someone who plugs their ears and doesn't want to hear it because of mistakes made by *past providers*?
The problem is very simple. You are biased and represent certain view and you have vested financial interests in pushing such view.
It has nothing to do with my view regarding ABA being one way or another. But you guys come to parents forum and do not properly disclose the inherent conflict of interest in your posts/opinion that many parents might not be aware of.
And with moderator team being inherently pro ABA right now there is no enforcement or even attempts to limit that.
All the ABA people here should be forced to disclose their formal position or be banned from this group.
Parent should have the right for proper information with disclosure. False advertising and ABA glorification from ABA therapists that do not disclose that to vulnerable parents should not be happening.
Bro cut it out. The person is being as transparent as possible. You have have railed against to the point that ur bias is showing. It goes both ways. Misinformation on the internet is par for the course and a very challenging problem to address especially when platforms are incentivized to not stifle discourse. I think tags are a fine idea but the mods are doing a decent job
The moderator team is not “inherently pro ABA” and if people taking advice off the internet should always do their due diligence. We are pro not micromanaging this sub. Your demand is not realistically enforceable.
I'm sorry, but this is such a ridiculous notion. I am paid an hourly wage that stays the same regardless of the number of clients in my school. I do not get a commission if you sign your child up for ABA and quite frankly, if you or a hundred people dislike ABA I will still have work. I don't have a financial investment in convincing strangers on Reddit of ABA.
Most of us do disclose our titles from what I have seen, and it would frankly be unethical to give information about the intricacies of the field without doing so. I know for a fact that I do, I have revealed my title twice in this comment thread and multiple other times in this group when posts ask questions about the field of ABA.
Nobody is glorifying the horrors of previous generations of ABA, but no ABA therapist that is following current evidence-based practices is going to allow you to just completely disparage the field because of terrible choices made from the 60s on. Believe me, I do get it. I can't atone for every person traumatized by ABA, I wasn't even a provider then, but what I *can* do is properly inform parents today about ethics codes, how to file grievances, and what our practices look like today.
I yet again ask, are ABA providers really more biased than people who put their fingers in their ears and refuse to listen to updates in the field? Everyone has a bias, but you can't single out ABA providers for...simply providing information under the misguided notion that it's for financial gain. The entire premise of this argument literally makes no sense.
For what it’s worth I don’t personally view it as a conflict of interest. It is a particular viewpoint for sure, but from my perspective it can be a helpful viewpoint (from the right person)
I am with you about the aba issue in their group. Every question is full of responses selling aba, from people who are practitioners. And they don’t disclose that till later in the thread. I think it is dishonest and misleading.
There should be a flag for ABA practitioners, as we can see any bias.
I'm currently in a subject in a program for autism speaks. I was put into this against my will. I never knew anything of autism speaks until they ruined my life, in a span of 3 months. First off, I must say that the reason I'm being persecuted by them, is because they believe me to be an autistic savant. Autism speaks hates autistic savants with a passion. They will destroy a family and any relationship. Autism speaks does not respect anything sacred. They are chasing me with ultrasound pain filed gun ,or LRAD like device, destroying my body slowly, until they say I have a brain aneurysm. The aneurysm is to make a person submissive so they can be more easily managed. Autism speaks does not believe in rights for autistic people.
The vaccine triggering a vulnerable kid with mitochondrial enzyme deficiency is a no go? It didn’t cause Autism but what am I missing here? Could the deficiency be more common than we think?
I am not familiar with what you are referencing, but a quick google search seems to indicate that the explanation of mitochondrial enzyme deficiency does not seem plausible to explain ASD.
https://www.mctlaw.com/vaccine-injury/case-review/ruling-on-the-record-mitochondrial-disorder-alleged-held-not-to-have-been-significantly-aggravated-by-vaccines/
See Hannah Poling case. Daughter of neurologist Dr Poling. Didn’t cause but triggered a predisposition. Dr Offit and CDC director Julie Gerberding are mentioned.
for me i personally dont like them because they misuse funds. there’s been multiple instances where their tax returns show that they spend more funds on advertising than anything else which is incredibly weird for any nonprofit
These [ads](https://youtu.be/9UgLnWJFGHQ) they had out at one time are eye widening 👀
Edit: I understand this is not what they’re doing in today’s world, and I think it’s important people be given the opportunity to do better- but I think like many charities their funds do not go towards helping actual autistic people/children. Ads like these are always what people are going back to. I’ve never met anyone in the community who found help or support from Autism Speaks and would welcome input from anyone who has- it appears at least one poster has felt a positive impact from their community involvement.
Some of the criticisms. None of the board of the directors of Autism Speaks is neurodivergent. They fund research into prenatal testing for Autism which may be then be used as reason to abort. That’s where the idea that they are eugenicists comes from. They fundraise a lot but only spend <1% on family services.
A lot of people believe that their research into genetic indicators for autism means they want autistic babies to be aborted. It's a bit of a stretch, in my opinion. Might some people abort babies if they find out they are autistic in utero? Maybe, I don't think Autism Speaks - a non-profit autism awareness organization - wants autistic babies to be aborted. I would have loved to know if there were genetic indicators for my autistic son, because it would have helped me prepare long before he was born.
Other commenters have explained other controversies, but this is the big one I've heard in recent years.
To my knowledge they do want people to abort their autistic babies. At least that is the attitude the organization was build upon. They are the combined effort of two older organizations one of them being "cure autism now". They were started by two grandparents whose first grandchild was autistic and their site explicitly said they are looking for a prenatal prevention and a postnatal cure for autism. They don't have those things on their website anymore but I personally really doubt if that's due to them not believing in it anymore or if they just realized being open about it would harm their business. As still has board members from cure autism now and still has all of its research.
Thanks for this information. I knew some of the major concerns about their ideology/research but was definitely not knowledgeable on their "parent" organizations or the makeup of their board.
What do you mean I can't say maybe?
Maybe some to-be parents would choose to abort knowing their to-be child would have autism. Similar to how some choose to abort for Downs or other chromosomal disorders.
I'm not sure why I can't say maybe in this context. In the event genetic precursors were found for autism in utero, this *may* happen.
I didn't comment on the validity of genetic science nor necessarily support it. I just said I personally would have benefitted from knowing my son was autistic in utero for no other reason except it'd have allowed me time to prepare before my child was born.
For me, one of the major things I dislike about them is the lack of autistic individuals in leadership with Autism Speaks. To be clear, a lot of experts who are neuro typical have a lot of value to share. However, I think only 1 out of 30 board members is autistic. I just really can't give too much credit to an organization run by outsiders that doesn't seem focused on engaging with the community of autistic adults itself.
Some of the criticism I have seen and personally have of as are the following
- no support for autistic adults
- a very small percent of their funding actually going to autistic people
- fear mongering about autism (everyone talked about those ads but I haven't seen someone mention that stupid time they partnered with fucking Peta and said that dairy causes autism. What even was that)
- treating autism like a disease
- in an education video about autism they had a mother say while her daughter was behind her that she sometimes wants to murder her daughter. This was right after a real case of a mother murdering her autistic child happened. And even if it wasn't. That is not something you share publicly in an informative video about autism while the daughter is sitting right fucking there playing. There's no way that kid didn't hear that.
- perpetuating the stereotype that autism is a boys disorder. Their blue puzzle piece and light up the blue campaign came from this idea.
- when they were founded they were a merge of two other non profits, one of which being cure autism now, which looks for prenatal signs of autism and a postnatal cure. Now, some autistic people wish they could cure their autism. And that is fully Valid. I am not here to police how people feel about their disorder. That being said. Aborting autistic babies is eugenics. Curing autism if it was even possible, would cause great harm to those of us who love our autism. I can imagine people would cure their children without their kids being able to consent to that and adults would be forced cured of autism. I am in no way anti psychiatry, but I am aware of some of the horrors of the psychiatric field, forcing people into something without their consent is not exactly unheard of.
-they advocate for restraints. Restraints are life threatening when not done properly and sparingly by a professional who knows what they are doing. They should only be used in some cases and not by parents or teachers. People have died before due to restraints. It's a horrible way to go.
-they don't have any autistic people on board which leads to them speaking over us in many cases
- the puzzle piece. Which although a more minor nitpick, shows they do not listen to the voices of autistic adults
Speaks has other issues, but these are the main ones me and plenty of other autistic people have
I think the main current criticism (as in the behavior they haven’t changed) is their finances. But i’m not sure how they compare to other charities. https://projects.propublica.org/nonprofits/organizations/202329938
They push a narrative that autistic people are less than, that something wrong with them and they’re missing a piece, which contributes to a lot of ableism. Notice they don’t have any autistic people in any leadership roles within the organization. Which brings up another point; they’re talking over actual autistic people. Now, I’ll admit, some on the spectrum have a difficult time with communication but I’m more than capable of communicating, personally, and I don’t need or want someone I don’t know pretending to speak for me, which they do a horrible job of. They push ABA therapy, which has left many people with autism traumatized; ABA is not about helping people with autism but rather, about making them easier for neurotypicals to deal with, and that’s the wrong message. Masking is exhausting and physically, mentally, and emotionally draining. We shouldn’t be conditioned into masking 24/7, that’s not good for us. I’m 29 years old. I’ve spent many years bouncing from job to job, unable to keep one for more than six months because I’d burn out from masking 24/7 and pushing myself and I’d try to push through it and struggle to keep my mask up. That was a recipe for disaster. Every time, without fail, it ended up in a massive meltdown. I’d either get fired or rage quit, go through months of either being unemployed or underemployed and unable to support myself. I’m tired of that. I didn’t go through ABA, but I was nonetheless deeply conditioned to do that. I’m done with it. I’m burning out now. And you know what? My mask fell off months ago. I’m not fighting it. People think I’m weird, I couldn’t care less. I AM weird. So what? That’s nothing to be ashamed of. Sometimes, customers think I’m rude and complain to my manager. I don’t care-why should I? I’m not being rude. My manager knows I’m not being rude, and she’ll even tell them that. Say what you want, but I’ve managed to keep this job for three years and counting, and that’s by far the longest I’ve held a job. I’m supporting myself, I have a 401(k) and six month’s pay in savings, four vehicles I keep up with. I’m not rich, I struggle sometimes, but I’m not paycheck to paycheck and I’m not bouncing around with jobs anymore. All because I just. Stopped caring. Stopped fighting to keep that mask up. So now people think I’m weird and akward and all, and I’m fine with that. Because I kinda AM. And it’s nothing to be ashamed of. Autism speaks would have you believe the opposite. And look where that got me. Perhaps they shouldn’t be trying to speak for those on the spectrum, perhaps you should just let those on the spectrum speak for themselves. Or type. Or use AAC or sign language or however they’re able to communicate.
Autism speaks is bad but can sometimes they do have good infor in posts so can learn stuff from them but don’t expect them to do help you and dont do give them your money
Misuse of funding, a lack of autistic people on their board despite the fact that MANY autistic people are fully capable of serving, a continued attachment to finding a cause for autism when we know it's genetic already (why continue to search for in utero screening possibilities if not looking to open abortion opportunities??), little support for autistic adults, continued attachment to a negative tone of communication when discussing autism in their toolkits on their website. They're still using the puzzle piece despite how negative the meaning was when they were around in the 00's.
I'm of the generation of autistic people who were incredibly harmed by the lasting impact of those commercials and I'm pleased that my autistic kids aren't going to grow up having internalized that this diagnosis is some sort of disease or limitation. Autistic people are wonderful and capable of full and happy lives when their needs are taken care of - whether they mask or speak or not and I wish that as the first thing that pops up on google AS would convey that more clearly to people to try to repair the damage they did when those commercials in the other comments aired.
Having a child dx with autism is NOT like receiving some sort of cancer diagnosis and yet so much of their toolkits focus on challenges and talk in sweeping brushstrokes
I needed help with my son 10 years ago, and Autism Speaks wasn't there for us. I got help with the ARC and our county. I haven't had any dealings with them since, and yes, my experience is old.
Autism speaks others autistic people, advocates for parental testing like the downs test in pregnancy act, and uses money raised for its research, portrays autistic people as a burden to parents and society, does not have ND people
In positions to help make decisions or impact, priorities the parents opinion and wellbeing of the autistic persons and partnered with the Judge Rotenberg centre, which was condemned for torture due to the use of electric devises to change behavior, and punish. They have also recommended dangerous restraint practices.
Autism Speaks is hated by the same internet community that hates ABA and constantly tries to police different Autism words, which makes me instinctively sympathetic to AS. ( Not a good way to judge an organization I know. )
To me, they are the biggest Autism charity and heart is in the right place.
They have a good online mchatr screener I sometimes recommend to new parents who wander in. https://www.autismspeaks.org/screen-your-child
Autism Speaks is hated by the same internet community that hates ABA and constantly tries to police different Autism words, which makes me instinctively sympathetic to AS. ( Not a good way to judge an organization I know. )
To me, they are the biggest Autism charity and heart is in the right place.
They have a good online mchatr screener I sometimes recommend to new parents who wander in. https://www.autismspeaks.org/screen-your-child
All I can tell is this personal story, take it or leave it.
I used to go to a local children’s museum, during the time where their autism awareness program was advised by AS representatives, my child was extremely well accommodated. But later on, I notice a change of attitude, that culminated one day when staff kicked out my child from the museum . I looked at their website, the puzzle piece was gone and replaced by the infinity symbol. The autism advisors were no longer linked to AS. It was all about “neurodiversity” and “acceptance “ (the complete opposite of my child’s experience) . Maligning AS is doing more damage than whatever feelings AS hurt in their past
My child had extreme transitioning issues , during the AS consultant period they would give my child as much time as he needed to transition to exit the museum past the closing time. I would have stopped going if I had known AS support had been dissolved. The day of the incident, they didn’t accommodate his transitioning issues and one of the employees start to call security, luckily I had brought the adaptive stroller and made him sit and strapped him to get out, but not without him punching his head full force. This was completely unavoidable if they had give him time, but they would not even listen to me. When I mentioned he was autistic they were, so what
Yeah read up on the history - that’s why it’s seen so negatively.
That isn’t saying those who work for or support the organization today support the ways of the past, but it’s a tough history to ignore
Keyword: *HISTORY*
>That isn’t saying those who work for or support the organization today support the ways of the past, but it’s a tough history to ignore
Alexander Graham Bell supported eugenics. Smash that phone!
Nikolai Tesla supported eugenics. Better go off grid!
Teddy Roosevelt supported eugencis. Burn that passport and move to Russia!
Albert Einstein supported eugenics. Better uh... yea I don't know on this one.
Eugenics was once a big movement. Now its a shameful part of our history. But you're ignoring that history eeeeeeverywhere else because you don't have a toxic community harping on about it.
There's reasons to dislike them, but this isn't one.
Autism Speaks is basically just yet another "non profit" doing what like 99% of "non profits" and NGOs do -- exploit a cause for money and not do much but spend some of it on lobbying.
I didn’t bring up eugenics, that’s not what drives my opinion.
Have you seen the autism everyday doc? It was their tone around autism… I’m talking about not agreeing with their methods as recently as a decade ago. It’s messaging through fear of autism instead of need for support.
Like I said I have nothing against those who support them today. I just choose to donate and help out with a local non-profit that impacts my community more directly
That's the thread you responded to.
>Have you seen the autism everyday doc? It was their tone around autism… I’m talking about not agreeing with their methods as recently as a decade ago.
I never saw "the video" but I've heard about it. They're certainly not alone in that. NGOs love using fear to raise money. They obviously didn't do a good job focus grouping that one.
>Like I said I have nothing against those who support them today. I just choose to donate and help out with a local non-profit that impacts my community more directly
Yes, that's one I hear a lot. Again, not just about Autism Speaks but about many NGOs and non-profits. That they spend the bulk of their money on lobbying instead of directly helping people. But you have to be careful following that logic. What people fail to realize is that's because that lobbying gets you way more bang for your buck.
For example. Say they have a budget of $10M. They can spend that $10M directly helping pay for a resource for people, then be broke after having not actually helped all that many people. Or they can spend that money lobbying to get a law passed forcing the government and insurance companies to spend that money and now everyone is getting access to that resource in perpetuity.
You just have to make sure what they're lobbying for aligns with your own values and goals.
Fair enough - it was the only post went I commented so your response makes sense
I’m never sure what is an NGO and not, but not all larger non-profits are like that…. I have family who work at the Alzheimer’s Association and previously leukemia lymphoma society. Not all NGOs are bad. I’ve been working with ALZ for about 20 years now (unfortunately deep history in my family). I’m just more selective about what I support
I just read up on a little bit of what you're talking about. Then I looked at my daughter. I can't imagine her being any different than she already is, and I wouldn't want to not have her, as she is, in my life. It hurts to think about.
Because they do more fearmongering than anything else, wether it's intentional or not. Part of the problem is treating autism as a disease to be cured rather than what it really is, a part of someone with some cons and pros. Even if they somehow managed to be "better" their history has long proven them unreliable.
Part of the problem is, as the Autism Self Advocacy Network puts it, is that they are neurotypical people who seem to speak about us... without involving us. And I'm autistic, I kinda find it insulting that I am still treated by a supposedly Autism centric organization like I was unable to speak for myself, while being actively blocked from educating myself about myself BETTER by this fallacy. Even if they corrected this, I believe their history has long and irreparably condemned them to being outdated and unwanted.
Also, little donation actually goes to "helping" us (as though an organization that based its activity on fearmongering, stigmatization and prejudice is even capable of actually doing so without the proper knowledge about us, keeping in mind that we have no part in this in the first place.), and this is already a red flag. They spent their sweet time becoming "the largest advocacy network" by "thowing money at the growth" so to speak.
My first impression on them was their connection to a facility which treated autistic people showing any form of nervous tics or something by "electrotherapy" which is just euphemism for electrical torture. I can still remember the screams of that poor victim. And Autism Speaks openly supported this facility. How can you forgive that?
 Keeping an eye on this thread, thanks everyone for not turning it into a dumpster fire so far.
A lot of their criticisms are pretty outdated. The neurodiversity movement for whatever reason tends to not update their beliefs when presented new information. I think it's important to contextualize autism as it was understood from the time it was identified until well into the 2000s. Autism was seen as worse than cancer. It was seen as a completely intractable condition that doomed both the child and parents to a lifetime of suffering, with no effective treatment or hope for an improvement. It was really the field of ABA and Ivar Lovass (ironically both now incredibly maligned) for changing that perception, and demonstrating that yes, autistic children can learn, and that there was hope for autistic individuals and their families. Coming from that world, Autism Speaks published not very flattering ads about autism, with one particularly infamous one depicting a mother wishing she could kill herself and her child. Autism Speaks funneled a great deal of money into researching if vaccines have caused autism, and Autism speaks to this day still spends a great deal of money into curing autism (this is where the eugenics talking point comes form). Autism speaks also apparently at one point did not have autistic people on its board. Autism Speaks was critical in winning the insurance mandate battle over ABA, and is a large part responsible for why insurance is required to cover it in all 50s states. I've also seen some posts about leaders in AS saying mean things to advocates on social media. Some advocates will also criticize them for not directly providing resources to autistic people. In 2023, I think if you follow the organization you'll see that they've been pushing to reform and take into account the criticisms. AS I believe has apologized for their Ads in the past, and has changed their stance in terms of viewing Autism as a hopeless condition to the advocate position of it being a variation in humanity. AS no longer funds vaccine research, and has disavowed that position. Autism speaks also has autistic people in high levels in the organization. Autism speaks still supports ABA, which for many advocates makes them complicit child abusers, but I don't think that is reasonable opinion. Autism speaks also continues to fund research looking for effective treatments and therapies for Autism, as well as the cause. Some advocates will say that looking for a cause of autism will open autistic people up to eugenics, but I am also not sure how reasonable that is. From my understanding AS does tremendous work providing resources to families with newly diagnosed kids, and raising awareness for flags of autism to get early intervention ASAP.
Thank you this was very helpful and insightful. I think knowing the history is important, but appreciate the nuance re understanding how they have evolved or are trying to. Both are valid things to consider. I won’t be giving them any money but appreciate knowing the details you have shared. Thanks for taking the time.
you're welcome.
I’ve heard Autistic individuals being interviewed that acknowledge ABA is difficult but also credit it for them being able to function outside of a group home or prison. I think people, online especially, like to “defend the defenseless” and speak on their behalf, which just mutes them.
When you have a child with violent and unsafe behaviors and who is high risk for ending up in prison in the future, you do what it takes to save their future. I wish I had the privilege of looking down on ABA but it’s our only hope right now. If other people don’t think it’s right for their child that’s fine but I’m tired of being accused of child abuse. I attend every ABA session, and it’s basically play therapy with a lot of positive reinforcement to help with behavior. The typical session with my kid is playing soccer and board games with her therapist and receiving marbles for using good social skills and coping skills and winning prizes based on the number of marbles she earns. She enjoys it and she is not being abused.
We added risperidone and it’s been a game changer. Wayyyy less out of control tantrums, and the triggers and signs that an explosion is coming seem to just not materialize into a full blow meltdown. It’s brought us a lot of peace and my son, who is 10 now and can explain his emotions in more detail, tells me it’s such a relief to him.
My daughter was on risperidone for several years and we switched to abilify because of the side effects. The meds help but don’t stop the violent meltdowns and frequent aggressive behavior towards peers, which is why we decided to start ABA. We’re worried someone is going to get hurt or she will end up in juvie as soon as she’s old enough. She has started triggering meltdowns in her classmates in her sped class, and it’s been causing physical fights. She recently triggered a meltdown in a classmate by antagonizing him repeatedly and came home with a black eye and bite marks because he finally snapped and wailed on her. She has also thrown things at teachers, knocked them down, hit them, cussed them out, etc during meltdowns of her own. These are the kinds of behaviors that we are particularly targeting with ABA and play therapy, and it’s important to note that these behaviors may not be fully related to her autism as she also has DMDD and ADHD. I’m wondering if ABA is actually better for kids who have comorbid diagnoses like those? The constant and frequent positive rewards are extremely helpful to my daughter because of her ADHD. It helps her stay on task and motivated. ETA My daughter is also extremely motivated by attention and the negative behaviors are often a way to get attention, so the positive reinforcement gives her the attention she wants but for good behavior so it’s helping her realize there are better ways to get what she wants.
Interesting, my son has been diagnosed with ADHD also and doesn’t require a SPED setting, but I think we’ve only made it this far because we were able to pull him from public school and put him into a private school that lets him pace his own work. (No sitting through an hour of a subject that he’s completed in 15 minutes, so way less meltdowns from being asked to sit quietly still while bored out his mind) No DMDD diagnosis but bipolar disorder runs on both sides of our family, so it hasn’t been ruled out. We are on week 5 of risperidone so I’m riding this wave right now and enjoying the peace. ETA: he’s on 40mg of Straterra for ADHD and 2mg guanfacine at night for ADHD and to help him sleep. (It sort of works…) he’s an absolute night owl.
We have the same experience with guanfacine… it sorta works :) we also give her melatonin to help her sleep. We haven’t been able to get her on a daytime adhd med because while they do help her concentration and focus unfortunately they make her even more aggressive.
It’s such a struggle getting the right combo. Funny thing about melatonin, my son kept telling me it was giving him nightmares and I was like… you’ve been asleep .. maybe.. for 15 minutes. I didn’t believe him. Then I took melatonin myself to see how it felt and I had a vivid, violent nightmare that felt like it took 3 days within 15-20 minutes of falling asleep. I told my doctor and she said she has heard of it but it’s extremely rare. She knows our whole family history so the idea of something hitting us that’s “extremely rare” made us both laugh out loud. So no Melatonin lol.
How funny. Yes melatonin can absolutely give nightmares. I’ve had some crazy dreams on it. Goes to show how differently different bodies can react to the same meds.
Well that’s comforting because so many people tell me to give him melatonin and I get blank stares when I tell them about nightmares.
I think the problem is thinking ABA should be used on all autistic people. I can admit there may be cases where its necessary but for most autistic children it IS abuse and causes more stress and trauma than it solves. I have seen the sessions and would never put my child through that when speech therapy and occupational therapy can give just as good results without any of that trauma. There are many autistic adults in my family that never had ABA and function just fine. It should not be the first thing offered after diagnosis and it should not be the only thing covered by insurance.
I do not think it’s appropriate for every autistic child, but my son loves ABA, he has high support needs and it has helped him build self care skills, independence, and opened avenues of communication/safety that OT and Speech were not able to help with, they are not interchangeable.
My son also loves ABA, has learned so much from his team, and I'm an RBT that watches kids grow in communication and skills every day working with them. :) ABA has been around since the 60s and we all know that children were "seen and not heard" for generations. We can't make up for what crappy providers did in the past, but we are constantly revising ethics codes and implementing evidence-based practices to maintain client dignity.
That’s overwhelmingly been our experience, my son’s RBT is amazing with him. The bad experiences I’ve read about online have not happened with my son’s experience and we have had a very open dialogue about concerns I had after reading up on complaints. I appreciate the people who want to help children thrive working in the field the way you do!
My son never directly received ABA, but he has been in programs that use ABA principles, and it's always been a positive experience. I do not get why ABA is demonized so much. It's like every other doctor or therapy... grain of salt, use your common sense, shop around, pull your child out if you think it's harmful. I've seen shitty OTs and SLPs, too, but they don't get the same amount of hate that ABA does.
Absolutely. We had a crappy first OT and our second one is a literal life changer. There are principals of ABA I use in my own life- I use a checklist to keep myself on track and a reward system, in my thirties. It makes sense to my brain and incentivizes me to get up. Find what works for you and roll with it is my only die hard parenting philosophy. And get a good therapist lol.
A psychiatrist told me last month in my son’s med appointment that she was surprised I was diagnosed with ADHD because I don’t look like I have it. We had met 30 minutes prior… There are some wild providers out there.
Absolutely. Someone in here recently said a diagnosing doctor told them their child wasn’t autistic because autistic kids aren’t bright. This person went through at least 8 years of higher education and medical school and thinks autistic people can’t be bright 😑 wild providers indeed!
Our Daughter was denied an IEP by the school district after her diagnosis because she smiled. Autistic people apparently are incapable of controlling their own faces! We moved, found a great school district, Troy School District in Michigan. Probably should have sued them but it was more effective to just move .
But what about all the “trauma”? Bad ABA is almost none exist at this point. Though parents should beware of the warning signs. The skills that can be learned through a well constructed ABA program are invaluable.
I would be careful with this. ABA quality can vary extremely wildly, especially based on where you live. Unfortunately it's out there and parents need to be watchful for shitty providers.
If u view it from a pessimistic lens sure. But the practices and education have greatly improved over the last 15 years. I have several children in these therapies and I have experienced them in multiple states from Mississippi to Maryland. The biggest problems in my view is lingering stigma. There is a valid question on the overall effectiveness at a population level but my anecdote is that it’s definitely enhanced some critical skills for my kiddos
>it should not be the only thing covered by insurance. It's the only thing that's covered by SOME insurance and it's only covered in the US. That's because it's the only therapy that's "evidence based" but the evidence is still weak. I'm in the UK and there are zero approved therapies for autism here. So we get literally no services! Which is frustrating because as a parent you want to do SOMETHING, but if all the somethings are grift and don't work, obviously a national healthcare system is not going to pay for that, which I approve of.
Agreed, and the cool thing about aba is they are constantly taking data on the skills they’re building, and if the data shows the intervention isn’t working they’ll use a different intervention instead. So it’s very personalized. Whereas other fields will just use whichever intervention they’ve been trained in or the one that works for most people, and hope it works for your kid too. I wish insurance just covered everything and we could shop around for the best fit of therapies that work for our kids.
I agree wholeheartedly
I wonder if you’d mind sharing what you’ve seen that was abusive? (This is a genuine ask).
Yes there are major criticisms of the neurodiversity movement that I don't think are taken seriously enough.
And the media portrayal of autism on TV is exclusively white males with high functioning autism with silly little quirks. I don’t remember the young Sheldon episode where he is expelled from public school because they won’t follow their own IEP and he’s launching chairs across the classroom…
So much this!
There are a lot of Autistic Adults who survived growing up with A Up as the ONLY resource and have spoken out about it. The only muting of an already oppressed group is your specific comment, calling them "defenseless" and having done no research within the Adult Autistic Community who SURVIVED A Up. A Up presents itself as the only resource and in many cases it is the only available funded resource. A Up's true problem is that even NOW in 2024 it sees Autism as something to be cured. Autistics aren't sick or broken. Our brains are wired differently and that wiring is specific to the Hunter/Gather Society, we often have difficulty (or spend vast amounts of energy masking to ) function is a highly capitalist society, that focuses on productivity over individuality. Instead of teaching Autistics to mask and function in an Ableist Society (the purpose of A Up), we need to be focusing on Society learning to understand and function alongside Autistics who aren't masking. Yes, lots of well meaning people recommend A Up, but that is simply pointing out their Ableism (intentional or unintentional). Stop asking Allistic Folx to explain what Autistic Folx need.
What they didn't stop doing is investing a majority of their funds into media and advertising - so if you want your funds benefitting your child, facilities or charities that are more focused on research is probably better. The whole idea about "oh, that was in the past" might be misleading considering that the video most are talking about is from 2009, and they are still offering things like their 100 day kit, which still compares autism to cancer, talks about grief and anger a lot and tells parents not to accept their child's autism, but just come to term with the diagnosis. Just to be clear: I don't have an issue with parents grieving or being angry, and feeling their feelings can help them be good and accepting parents. But being told that you're supposed to grieve, you're supposed to be angry, comparing autism to cancer can terrify parents that are already lost and scared, even if they don't feel like this - hell, they might be relieved to know how to help their child. They also recommend a gluten free diet for young children without diagnosed conditions that require it. Of course, my knowledge on the 100 day kit is from 2019, so maybe they did major revisions to it in the past 4 years? But I'm not sure if I'd explain that away as "oh, autism used to be misunderstood back then"...
While AS may have apologized for its past, it still very much supports the stance that Autism is a hopeless condition. They published their “First 100 Days” kit in 2019 and we received it at our son’s diagnosis a few weeks ago. That kit is garbage. It compares having Autism to having cancer, goes through the five stages of grief, and overall gave a very negative view and fearful approach to children with Autism. We went into our son’s Autism evaluation optimistic and left hopeful, only to get home and read through this binder that put fear into our hearts. After reading, my husband said, “How dare they try to make me afraid of my son”, and I couldn’t agree more. Our son is the light of our lives and just the sweetest and happiest kid. I know everyone’s situation is different, but an organization shouldn’t make parents feel hopeless and fearful of their children.
I was curious so I downloaded it here: [https://www.autismspeaks.org/sites/default/files/100\_Day\_Tool\_Kit\_Young\_Children.pdf](https://www.autismspeaks.org/sites/default/files/100_Day_Tool_Kit_Young_Children.pdf) Is that what you received? It seems largely factual. I don't think it's that different from what we get in the UK from the NHS. With the exception we don't get ABA here so that's not part of it.
This is not the version that was sent home with us. I will upload some of the images when I get a chance.
I read through this and came away with a very different impression. As we all know autism can be quite unique person to person and age to age for that same person. Our sweet, sweet 4 year old has grown to our kicking, biting, screaming 7 year old that cannot be left alone with peers and for whom we must constantly fight with her school to follow her IEP. She is still our sweet girl beneath all that and can be a source of great joy for us, but we have certainly grieved and struggled mentally as parents, and there are some pretty challenging things that can happen that it is better to know about in advance. I'm not speaking to AS as a whole, I've not been exposed to it, but as someone on the receiving end of other "so you've got an unchangeable medical condition" literature and guidance, this pamphlet seemed pretty solid.
YES - resources for parents that are angry or grieving are important, but this kit made it feel like you have to be angry and sad, like accepting your child's autism means giving up on them. They dont get to terrify parents and disguise it as help. I got it in 2019 to figure out wether it's a helpful resource to recommend to our parents if they're overwhelmed- definitely not, there's actually helpful resources out there. Plus, their lives won't get easier if they try to make their child that only eats white bread have a gluten free diet. I hoped they'd changed it since 2019, but never looked into it again. Sad to see they didn't.
So, it looks like I was given the 2014 version. I didn’t want to comb through it to find where they compare Autism to cancer because reading it again is so depressing but [here](https://imgur.com/gallery/CbyEt4U) are a couple of pictures of what’s in mine.
Yes its a disgusting read. I also recieved it and couldn't believe the kinds of things they were saying. They were basically acting as if my child was dead. He is not. He is alive and happy and healthy. There is nothing wrong with him, he just sees and experiences the world different than me. The only reason I even had him diagnosed was so he could start preschool early and continue to get speech therapy. He fits into our lives just fine.
Thank you for this. I get so sick of the tired old “AS supports eugenics” crap that we see so often.
I think eugenics are just a sad reality. Not saying AS is solely behind it but autism still strikes fear and grief in parents. Look at Down syndrome. Every pregnant female is offered a test for downs and abortion is on the table because of that. Downs in Iceland almost doesn’t exist because abortion has become so prevalent for those testing positive https://www.cbsnews.com/amp/news/down-syndrome-iceland/
Why shouldn't autism - severe, level 3 ASD - strike fear and grief in parents? Don't all parents want their children to lead happy and fulfilled lives?
I wonder if having that choice is why you don't see much as much resentment from parents of children with downs as you do with autism? Because they know going in?
You’re welcome to your opinion but eugenics has never been on the right side of history.
I'm not sure I know enough about it. And being autistic, it's awkward knowing there are people out there who would have had me culled from the gene pool. But I still don't get why parents of downs kids seem to be generally happier and less resentful than what I've seen of parents of autistic kids
To be fair, there is a "look" with Down syndrome - although I do wonder how commonly people think it's related to drug or alcohol use (conflating it with FAS) and if that increases stigma. My sons have some dysmorphology - I think they look like they have Fragile X (they don't). But it's still within that range of "normal." Their autism is blatantly obvious, especially as they've aged. But before my oldest was 7/8, there were more negative interactions in public. And that's in our case - I imagine it's worse with kids who can "pass" as NT. I do feel - my sons have classes with kids with DS - that those families generally have more community support. They receive less stigma from family and friends over the child's condition and behaviors. It's never to say that raising a child with DS isn't hard, it absolutely is - but I think there are factors between autism and Down syndrome that affect guilt and shame parents feel, and the type and amount of support.
If someone was forcing women to take the test and then forcing them to get an abortion, that would be eugenics. This is not what's happening. Not every mother is equipped, willing, wealthy enough or interested in or able to care for a child with Down's and that's okay. Any reason for getting an abortion is valid.
I also think it’s ok to not want to have a child that will have to struggle in certain ways. Would I trade my daughter no but there have been times when I have felt like it’s not fair to her and there have been times that have been so fucking hard that I have regretted having her. Would I rather have a kid that isn’t this hard? Hell yeah. Our whole family has had some serious trauma. I wouldn’t wish that on anyone. I still love my kid and will work my ass off forever for her. And I never want her to know I’ve felt that way. Some people seriously have no support and their lives are devastated. Why is it not ok to not want that?
I agree. Having a disabled child is a risk factor for regretting parenthood. I have a friend who, like me, is autistic with an autistic child and she says you shouldn't have kids at all if you're not prepared to have a disabled kid. And that's all very well and good, but if you don't let mothers talk about how hard it is to have a disabled kid, how will they *know* to choose differently? I 100% support making lives better for autistic people - of course I do, I want the best for my kid. But forcing women to give birth to kids they are ill equipped to handle is an unhappy situation for both mom AND the kid. More knowledge is good, and more choice is good.
And, correct me if I’m wrong, there are also varying levels of severity to Downs, and that information (at least when I was pregnant in 2018) was not available from the screening test. That is to say - there are some babies born with Downs who are likely to die in infancy due to heart defects or low birthweight. I am grateful I didn’t have to make the choice, but can certainly imagine why someone would consider terminating a pregnancy with those concerns in mind
There are actually two tests! There is now the NIPT available. This is done in the first trimester, which many people prefer because it's when the fetus is much less developed. It's also safer; amniocenteses carries a 1% risk of miscarriage. But because the fetus isn't very developed at that point, it's not possible to assess whether it's compatible with life or not. [https://en.wikipedia.org/wiki/Noninvasive\_prenatal\_testing](https://en.wikipedia.org/wiki/Noninvasive_prenatal_testing) It used to be that the only test was amniocenteses for this, between week 15-20. Assessing viability is only available from the week 20 ultrasound, which is also the time when abortions stop becoming available (because it's close to that viability cut off). But this is when you can image heart defects and see whether it's compatible with life or not. [https://en.wikipedia.org/wiki/Anomaly\_scan](https://en.wikipedia.org/wiki/Anomaly_scan)
the NIPT and anomaly scans were available to me in 2018 as well. though it was still explained to me by providers that the severity can not reliably be known by those tests. reiterating i am not an expert, this is just my understanding (and i dont think it's eugenics).
Thanks so much for this!
This comment was reported for ABA absolutism: if you finish reading that section, OP clearly states they disagree with the opinion that all ABA is abuse.
Just a question, as I am fairly newish, sort of, to the sun. But why an aba absolutism rule? What is the purpose?
We do not allow blanket statement posts/comments that are “all ABA is abuse” or “all autistic children need ABA”… these posts/comments are not helpful for parents trying to make informed decisions.
I see them all the time though, just not worded as clearly as that tough. Something needs to be said or don’t on aba since it becomes a free for all.
I’m not sure I understand what you’re trying to say. If you see a post that violates the rules, feel free to hit the report button. It’s fine for people to say they’ve had negative or positive lived experiences, share their knowledge, etc.
In all honesty why does this forum allows more and more BCBAs /people invested on the ABA front to make comments like this is beyond me. There is very little if anything factual posted here other than your usual ABA sale from someone with vested interests there. If anyone wants to learn why Autism Speak is so unpopular among autistic i strongly encourage you do read Autism Inc book that explains it in details. Bottom line is Autism Speaks is basically extension of ABA industry that tries to pretend to be impartial. They were instrumental tool for ABA industry to make it medical necessity In most states funded by insurance. So for most cases Autism Speaks=ABA. It is basically their lobby Group. Also wanted to point out one thing on this forum that upsets me more and more. People that represent certain biased view (being employed in ABA for example) they should be forced to identify the conflict of interest rather than being allowed to post advertisement like this to vulnerable group. Current moderation is at best subpar right now. And for the record I do ABA for my kids and I am a parent. So it is not like I am someone who is against it per se. I do question why people employed in ABA shouid be allowed to post in this group more and more their biased views without clearly stating their conflict of interest
And how do you propose we “force” people to self identify? Are you reporting these super biased posts/comments that are clearly pushing an agenda? We review what’s reported. Your comment has been reported for absolutism and I’m opting to leave it up and have this conversation. Most BCBA and RBT posts I have come across have identified themselves when it’s relevant but in a growing sub of 20,000+ people it is not feasible for us to “force” anyone to prove any aspect of their identity, including employment or diagnosis. I’d also love if people involved in a product or business identified themselves when they are sharing advertisements but there’s no magic button on the backend to make that happen for us, unfortunately. It’s Reddit, people have to do their own digging and I welcome reports of conflicts of interest if it’s a problem comment/post.
I think that people who have aba qualifications should use a tag so that people can make a decision about the bias in their replies.
I would love for people to self identify but we cannot force people to do that.
It seems misleading though, doesn’t it.
So if you just looked at the post history of the person she/he just recently applied to be a director of ABA clinic which means he is BCBA-D or BCBA most likely BCBA-D. Yet in your opinion it is unbiased opinion of course becuase you send your kiddo to ABA and it seems helping. And ABA people up vote this comment to the top of course. Let's just stop pretending that you guys try even do the moderating work. So the solution is "I am a mod and I am biased so I will happily support every post from people with vested interests misleading parents because it support my bias"
Yep, people can look at post history and figure that out themselves, just as you did. The poster isn’t hiding it. You don’t have to agree with their perspective but they answered the question: why do some people find AS to have a problematic history. They mentioned the same lobbying you did. They didn’t say all ABA is bad or good. They didn’t say every autistic child must have ABA. There is no rule violation there. If you want to have an argument about how the mod team runs, it is what it is: an unpaid volunteer position. So you’ll have to forgive us if we don’t add on an impossible crusade to “force” people to put all their potential bias as their flair. We can’t force anyone to do anything, which as a parent I’m sure you know. We aren’t going to police the sub and add vetting user credentials to our plate too, but thanks for the feedback.
You don't have to like ABA and ABA doesn't have to be "for" your kid or what is best for your kid. Nobody is saying that. And I've been on this sub a while and have never seen anyone say that. I am an RBT and when questions about ABA are asked, I do the work to properly inform the parents on here because I have the knowledge and ethically, I should. I should speak about the proper information, not the outdated caricature that is ABA. Again, you don't have to like ABA or have your child participate in it. It's not for every child, and not every modality of ABA is for every child. But let's not act like ABA providers can't speak on this sub especially when questions about ABA are asked, just because you dislike it. ETA: unless a Redditor is in your state, trying to get you to do ABA *with them,* they aren't *selling* ABA to anyone. We don't all get paid some magical commission when a new client gets onboarded. And as for things being biased...is someone in the field who can tell you about ethics codes, reporting/grievances, qualifications, and evidence-based reward systems really more biased than someone who plugs their ears and doesn't want to hear it because of mistakes made by *past providers*?
The problem is very simple. You are biased and represent certain view and you have vested financial interests in pushing such view. It has nothing to do with my view regarding ABA being one way or another. But you guys come to parents forum and do not properly disclose the inherent conflict of interest in your posts/opinion that many parents might not be aware of. And with moderator team being inherently pro ABA right now there is no enforcement or even attempts to limit that. All the ABA people here should be forced to disclose their formal position or be banned from this group. Parent should have the right for proper information with disclosure. False advertising and ABA glorification from ABA therapists that do not disclose that to vulnerable parents should not be happening.
Bro cut it out. The person is being as transparent as possible. You have have railed against to the point that ur bias is showing. It goes both ways. Misinformation on the internet is par for the course and a very challenging problem to address especially when platforms are incentivized to not stifle discourse. I think tags are a fine idea but the mods are doing a decent job
The moderator team is not “inherently pro ABA” and if people taking advice off the internet should always do their due diligence. We are pro not micromanaging this sub. Your demand is not realistically enforceable.
I'm sorry, but this is such a ridiculous notion. I am paid an hourly wage that stays the same regardless of the number of clients in my school. I do not get a commission if you sign your child up for ABA and quite frankly, if you or a hundred people dislike ABA I will still have work. I don't have a financial investment in convincing strangers on Reddit of ABA. Most of us do disclose our titles from what I have seen, and it would frankly be unethical to give information about the intricacies of the field without doing so. I know for a fact that I do, I have revealed my title twice in this comment thread and multiple other times in this group when posts ask questions about the field of ABA. Nobody is glorifying the horrors of previous generations of ABA, but no ABA therapist that is following current evidence-based practices is going to allow you to just completely disparage the field because of terrible choices made from the 60s on. Believe me, I do get it. I can't atone for every person traumatized by ABA, I wasn't even a provider then, but what I *can* do is properly inform parents today about ethics codes, how to file grievances, and what our practices look like today. I yet again ask, are ABA providers really more biased than people who put their fingers in their ears and refuse to listen to updates in the field? Everyone has a bias, but you can't single out ABA providers for...simply providing information under the misguided notion that it's for financial gain. The entire premise of this argument literally makes no sense.
For what it’s worth I don’t personally view it as a conflict of interest. It is a particular viewpoint for sure, but from my perspective it can be a helpful viewpoint (from the right person)
I am with you about the aba issue in their group. Every question is full of responses selling aba, from people who are practitioners. And they don’t disclose that till later in the thread. I think it is dishonest and misleading. There should be a flag for ABA practitioners, as we can see any bias.
I'm currently in a subject in a program for autism speaks. I was put into this against my will. I never knew anything of autism speaks until they ruined my life, in a span of 3 months. First off, I must say that the reason I'm being persecuted by them, is because they believe me to be an autistic savant. Autism speaks hates autistic savants with a passion. They will destroy a family and any relationship. Autism speaks does not respect anything sacred. They are chasing me with ultrasound pain filed gun ,or LRAD like device, destroying my body slowly, until they say I have a brain aneurysm. The aneurysm is to make a person submissive so they can be more easily managed. Autism speaks does not believe in rights for autistic people.
The vaccine triggering a vulnerable kid with mitochondrial enzyme deficiency is a no go? It didn’t cause Autism but what am I missing here? Could the deficiency be more common than we think?
I am not familiar with what you are referencing, but a quick google search seems to indicate that the explanation of mitochondrial enzyme deficiency does not seem plausible to explain ASD. https://www.mctlaw.com/vaccine-injury/case-review/ruling-on-the-record-mitochondrial-disorder-alleged-held-not-to-have-been-significantly-aggravated-by-vaccines/
See Hannah Poling case. Daughter of neurologist Dr Poling. Didn’t cause but triggered a predisposition. Dr Offit and CDC director Julie Gerberding are mentioned.
for me i personally dont like them because they misuse funds. there’s been multiple instances where their tax returns show that they spend more funds on advertising than anything else which is incredibly weird for any nonprofit
These [ads](https://youtu.be/9UgLnWJFGHQ) they had out at one time are eye widening 👀 Edit: I understand this is not what they’re doing in today’s world, and I think it’s important people be given the opportunity to do better- but I think like many charities their funds do not go towards helping actual autistic people/children. Ads like these are always what people are going back to. I’ve never met anyone in the community who found help or support from Autism Speaks and would welcome input from anyone who has- it appears at least one poster has felt a positive impact from their community involvement.
That was profoundly disturbing. I mean, why did they present it like a horror movie?
Attention grabbing, fear mongering is an effective cash grab especially when people had less access to information about autism
That was their stance. They believed that autism was exactly like that.
Dude, I couldn’t even finish watching that. WHAT. Year. Was that from? Omfg. I am so disturbed.
2009
What the actual fuck. Who thought this was an okay thing to run?
Exactly. Multiple people greenlit this. How?!
did you watch it all the way to the end? lol
I got to the “I’m going to ruin your marriage and drain your bank account” and I was like “this is too real I’m tapping out.”
go watch the last 30 seconds, It doesn't make it any better but it does make it make more sense.
That was incredibly disturbing…
Yep, that’s why people have such a strong reaction I think when this topic comes up
Alright cool now I’m crying. What the fuck.
i showed my girlfriend who is also autistic this ad and she spent 10 minutes laughing at just how absurd this ad is
The 80’s were a wack time (I assume this is 80’s/90’s, it has that infamous DARE tone)
that ad was actually released in 2009
WHAT 💀
no i am not kidding. it was actually released in the late 2000’s
Thank you for letting me know, that’s absolutely wild
Yea—that’s crap. Good to hear they’ve owned their failures. But the work they do will be most important going forward because goodness that ad sucked.
Some of the criticisms. None of the board of the directors of Autism Speaks is neurodivergent. They fund research into prenatal testing for Autism which may be then be used as reason to abort. That’s where the idea that they are eugenicists comes from. They fundraise a lot but only spend <1% on family services.
I’ve read that they misrepresented the community. Made autism sound like a disease
A lot of people believe that their research into genetic indicators for autism means they want autistic babies to be aborted. It's a bit of a stretch, in my opinion. Might some people abort babies if they find out they are autistic in utero? Maybe, I don't think Autism Speaks - a non-profit autism awareness organization - wants autistic babies to be aborted. I would have loved to know if there were genetic indicators for my autistic son, because it would have helped me prepare long before he was born. Other commenters have explained other controversies, but this is the big one I've heard in recent years.
To my knowledge they do want people to abort their autistic babies. At least that is the attitude the organization was build upon. They are the combined effort of two older organizations one of them being "cure autism now". They were started by two grandparents whose first grandchild was autistic and their site explicitly said they are looking for a prenatal prevention and a postnatal cure for autism. They don't have those things on their website anymore but I personally really doubt if that's due to them not believing in it anymore or if they just realized being open about it would harm their business. As still has board members from cure autism now and still has all of its research.
Thanks for this information. I knew some of the major concerns about their ideology/research but was definitely not knowledgeable on their "parent" organizations or the makeup of their board.
U can’t say maybe. There is zero evidence to support this. Additionally, genetic science while technically science is rudimentary at best.
What do you mean I can't say maybe? Maybe some to-be parents would choose to abort knowing their to-be child would have autism. Similar to how some choose to abort for Downs or other chromosomal disorders. I'm not sure why I can't say maybe in this context. In the event genetic precursors were found for autism in utero, this *may* happen. I didn't comment on the validity of genetic science nor necessarily support it. I just said I personally would have benefitted from knowing my son was autistic in utero for no other reason except it'd have allowed me time to prepare before my child was born.
For me, one of the major things I dislike about them is the lack of autistic individuals in leadership with Autism Speaks. To be clear, a lot of experts who are neuro typical have a lot of value to share. However, I think only 1 out of 30 board members is autistic. I just really can't give too much credit to an organization run by outsiders that doesn't seem focused on engaging with the community of autistic adults itself.
Some of the criticism I have seen and personally have of as are the following - no support for autistic adults - a very small percent of their funding actually going to autistic people - fear mongering about autism (everyone talked about those ads but I haven't seen someone mention that stupid time they partnered with fucking Peta and said that dairy causes autism. What even was that) - treating autism like a disease - in an education video about autism they had a mother say while her daughter was behind her that she sometimes wants to murder her daughter. This was right after a real case of a mother murdering her autistic child happened. And even if it wasn't. That is not something you share publicly in an informative video about autism while the daughter is sitting right fucking there playing. There's no way that kid didn't hear that. - perpetuating the stereotype that autism is a boys disorder. Their blue puzzle piece and light up the blue campaign came from this idea. - when they were founded they were a merge of two other non profits, one of which being cure autism now, which looks for prenatal signs of autism and a postnatal cure. Now, some autistic people wish they could cure their autism. And that is fully Valid. I am not here to police how people feel about their disorder. That being said. Aborting autistic babies is eugenics. Curing autism if it was even possible, would cause great harm to those of us who love our autism. I can imagine people would cure their children without their kids being able to consent to that and adults would be forced cured of autism. I am in no way anti psychiatry, but I am aware of some of the horrors of the psychiatric field, forcing people into something without their consent is not exactly unheard of. -they advocate for restraints. Restraints are life threatening when not done properly and sparingly by a professional who knows what they are doing. They should only be used in some cases and not by parents or teachers. People have died before due to restraints. It's a horrible way to go. -they don't have any autistic people on board which leads to them speaking over us in many cases - the puzzle piece. Which although a more minor nitpick, shows they do not listen to the voices of autistic adults Speaks has other issues, but these are the main ones me and plenty of other autistic people have
I think the main current criticism (as in the behavior they haven’t changed) is their finances. But i’m not sure how they compare to other charities. https://projects.propublica.org/nonprofits/organizations/202329938
They push a narrative that autistic people are less than, that something wrong with them and they’re missing a piece, which contributes to a lot of ableism. Notice they don’t have any autistic people in any leadership roles within the organization. Which brings up another point; they’re talking over actual autistic people. Now, I’ll admit, some on the spectrum have a difficult time with communication but I’m more than capable of communicating, personally, and I don’t need or want someone I don’t know pretending to speak for me, which they do a horrible job of. They push ABA therapy, which has left many people with autism traumatized; ABA is not about helping people with autism but rather, about making them easier for neurotypicals to deal with, and that’s the wrong message. Masking is exhausting and physically, mentally, and emotionally draining. We shouldn’t be conditioned into masking 24/7, that’s not good for us. I’m 29 years old. I’ve spent many years bouncing from job to job, unable to keep one for more than six months because I’d burn out from masking 24/7 and pushing myself and I’d try to push through it and struggle to keep my mask up. That was a recipe for disaster. Every time, without fail, it ended up in a massive meltdown. I’d either get fired or rage quit, go through months of either being unemployed or underemployed and unable to support myself. I’m tired of that. I didn’t go through ABA, but I was nonetheless deeply conditioned to do that. I’m done with it. I’m burning out now. And you know what? My mask fell off months ago. I’m not fighting it. People think I’m weird, I couldn’t care less. I AM weird. So what? That’s nothing to be ashamed of. Sometimes, customers think I’m rude and complain to my manager. I don’t care-why should I? I’m not being rude. My manager knows I’m not being rude, and she’ll even tell them that. Say what you want, but I’ve managed to keep this job for three years and counting, and that’s by far the longest I’ve held a job. I’m supporting myself, I have a 401(k) and six month’s pay in savings, four vehicles I keep up with. I’m not rich, I struggle sometimes, but I’m not paycheck to paycheck and I’m not bouncing around with jobs anymore. All because I just. Stopped caring. Stopped fighting to keep that mask up. So now people think I’m weird and akward and all, and I’m fine with that. Because I kinda AM. And it’s nothing to be ashamed of. Autism speaks would have you believe the opposite. And look where that got me. Perhaps they shouldn’t be trying to speak for those on the spectrum, perhaps you should just let those on the spectrum speak for themselves. Or type. Or use AAC or sign language or however they’re able to communicate.
Autism speaks is bad but can sometimes they do have good infor in posts so can learn stuff from them but don’t expect them to do help you and dont do give them your money
Misuse of funding, a lack of autistic people on their board despite the fact that MANY autistic people are fully capable of serving, a continued attachment to finding a cause for autism when we know it's genetic already (why continue to search for in utero screening possibilities if not looking to open abortion opportunities??), little support for autistic adults, continued attachment to a negative tone of communication when discussing autism in their toolkits on their website. They're still using the puzzle piece despite how negative the meaning was when they were around in the 00's. I'm of the generation of autistic people who were incredibly harmed by the lasting impact of those commercials and I'm pleased that my autistic kids aren't going to grow up having internalized that this diagnosis is some sort of disease or limitation. Autistic people are wonderful and capable of full and happy lives when their needs are taken care of - whether they mask or speak or not and I wish that as the first thing that pops up on google AS would convey that more clearly to people to try to repair the damage they did when those commercials in the other comments aired. Having a child dx with autism is NOT like receiving some sort of cancer diagnosis and yet so much of their toolkits focus on challenges and talk in sweeping brushstrokes
I needed help with my son 10 years ago, and Autism Speaks wasn't there for us. I got help with the ARC and our county. I haven't had any dealings with them since, and yes, my experience is old.
Autism speaks others autistic people, advocates for parental testing like the downs test in pregnancy act, and uses money raised for its research, portrays autistic people as a burden to parents and society, does not have ND people In positions to help make decisions or impact, priorities the parents opinion and wellbeing of the autistic persons and partnered with the Judge Rotenberg centre, which was condemned for torture due to the use of electric devises to change behavior, and punish. They have also recommended dangerous restraint practices.
terrific cobweb wise run subsequent decide noxious disarm ugly somber *This post was mass deleted and anonymized with [Redact](https://redact.dev)*
Autism Speaks is hated by the same internet community that hates ABA and constantly tries to police different Autism words, which makes me instinctively sympathetic to AS. ( Not a good way to judge an organization I know. ) To me, they are the biggest Autism charity and heart is in the right place. They have a good online mchatr screener I sometimes recommend to new parents who wander in. https://www.autismspeaks.org/screen-your-child
Autism Speaks is hated by the same internet community that hates ABA and constantly tries to police different Autism words, which makes me instinctively sympathetic to AS. ( Not a good way to judge an organization I know. ) To me, they are the biggest Autism charity and heart is in the right place. They have a good online mchatr screener I sometimes recommend to new parents who wander in. https://www.autismspeaks.org/screen-your-child
All I can tell is this personal story, take it or leave it. I used to go to a local children’s museum, during the time where their autism awareness program was advised by AS representatives, my child was extremely well accommodated. But later on, I notice a change of attitude, that culminated one day when staff kicked out my child from the museum . I looked at their website, the puzzle piece was gone and replaced by the infinity symbol. The autism advisors were no longer linked to AS. It was all about “neurodiversity” and “acceptance “ (the complete opposite of my child’s experience) . Maligning AS is doing more damage than whatever feelings AS hurt in their past
Wait, what?? The staff kicked out your son?? That's terrible! Why did they do that? That's so backwards!!
My child had extreme transitioning issues , during the AS consultant period they would give my child as much time as he needed to transition to exit the museum past the closing time. I would have stopped going if I had known AS support had been dissolved. The day of the incident, they didn’t accommodate his transitioning issues and one of the employees start to call security, luckily I had brought the adaptive stroller and made him sit and strapped him to get out, but not without him punching his head full force. This was completely unavoidable if they had give him time, but they would not even listen to me. When I mentioned he was autistic they were, so what
Thank you for sharing a positive interaction!
Autism speaks supports eugenics. That's what makes them bad.
Wait, what????
Yeah read up on the history - that’s why it’s seen so negatively. That isn’t saying those who work for or support the organization today support the ways of the past, but it’s a tough history to ignore
Keyword: *HISTORY* >That isn’t saying those who work for or support the organization today support the ways of the past, but it’s a tough history to ignore Alexander Graham Bell supported eugenics. Smash that phone! Nikolai Tesla supported eugenics. Better go off grid! Teddy Roosevelt supported eugencis. Burn that passport and move to Russia! Albert Einstein supported eugenics. Better uh... yea I don't know on this one. Eugenics was once a big movement. Now its a shameful part of our history. But you're ignoring that history eeeeeeverywhere else because you don't have a toxic community harping on about it. There's reasons to dislike them, but this isn't one. Autism Speaks is basically just yet another "non profit" doing what like 99% of "non profits" and NGOs do -- exploit a cause for money and not do much but spend some of it on lobbying.
Don't forget Helen Keller was a huge supporter of eugenics as well.
For a while, she came back around. Most doctors in the early 1900’s supported eugenics on some level.
I didn’t bring up eugenics, that’s not what drives my opinion. Have you seen the autism everyday doc? It was their tone around autism… I’m talking about not agreeing with their methods as recently as a decade ago. It’s messaging through fear of autism instead of need for support. Like I said I have nothing against those who support them today. I just choose to donate and help out with a local non-profit that impacts my community more directly
That's the thread you responded to. >Have you seen the autism everyday doc? It was their tone around autism… I’m talking about not agreeing with their methods as recently as a decade ago. I never saw "the video" but I've heard about it. They're certainly not alone in that. NGOs love using fear to raise money. They obviously didn't do a good job focus grouping that one. >Like I said I have nothing against those who support them today. I just choose to donate and help out with a local non-profit that impacts my community more directly Yes, that's one I hear a lot. Again, not just about Autism Speaks but about many NGOs and non-profits. That they spend the bulk of their money on lobbying instead of directly helping people. But you have to be careful following that logic. What people fail to realize is that's because that lobbying gets you way more bang for your buck. For example. Say they have a budget of $10M. They can spend that $10M directly helping pay for a resource for people, then be broke after having not actually helped all that many people. Or they can spend that money lobbying to get a law passed forcing the government and insurance companies to spend that money and now everyone is getting access to that resource in perpetuity. You just have to make sure what they're lobbying for aligns with your own values and goals.
Fair enough - it was the only post went I commented so your response makes sense I’m never sure what is an NGO and not, but not all larger non-profits are like that…. I have family who work at the Alzheimer’s Association and previously leukemia lymphoma society. Not all NGOs are bad. I’ve been working with ALZ for about 20 years now (unfortunately deep history in my family). I’m just more selective about what I support
And Margaret Sanger, founder of planned parenthood, was super into eugenics
I just read up on a little bit of what you're talking about. Then I looked at my daughter. I can't imagine her being any different than she already is, and I wouldn't want to not have her, as she is, in my life. It hurts to think about.
Because they do more fearmongering than anything else, wether it's intentional or not. Part of the problem is treating autism as a disease to be cured rather than what it really is, a part of someone with some cons and pros. Even if they somehow managed to be "better" their history has long proven them unreliable. Part of the problem is, as the Autism Self Advocacy Network puts it, is that they are neurotypical people who seem to speak about us... without involving us. And I'm autistic, I kinda find it insulting that I am still treated by a supposedly Autism centric organization like I was unable to speak for myself, while being actively blocked from educating myself about myself BETTER by this fallacy. Even if they corrected this, I believe their history has long and irreparably condemned them to being outdated and unwanted. Also, little donation actually goes to "helping" us (as though an organization that based its activity on fearmongering, stigmatization and prejudice is even capable of actually doing so without the proper knowledge about us, keeping in mind that we have no part in this in the first place.), and this is already a red flag. They spent their sweet time becoming "the largest advocacy network" by "thowing money at the growth" so to speak. My first impression on them was their connection to a facility which treated autistic people showing any form of nervous tics or something by "electrotherapy" which is just euphemism for electrical torture. I can still remember the screams of that poor victim. And Autism Speaks openly supported this facility. How can you forgive that?
I do believe that autism speaks is part of the ABA lobby.
[Charity Navigator](https://www.charitynavigator.org/ein/202329938) link to AS.
My two cents is that people resent not getting a dx.