(Inside: 4 reasons to not support autism speaks are a must read for all autism mamas! They’re the most popular autism organization, but they’re so harmful.)
When we found out that A-Man is autistic, I went into research mode, like I do with everything.
Eventually, that research lead me to realize I’m autistic myself. But before that happened…
Naturally, that research brought up the organization Autism Speaks. It’s one of the largest autism organization in the country.
I really really wanted to get on board with this organization and become that mom of a child with autism with the blue puzzle piece on my car and educating people.
As we are getting close to Autism Awareness Day and I’ve seen more and more posts about it, I felt that I needed to share my thoughts on the popular autism organization.
As a mother of an autistic child, and as an autistic person myself, I do not and cannot support Autism Speaks, and I don’t think that you should either.
I realize that many people have only heard of Autism Speaks.
Well-meaning folks do marathons and fundraisers for the popular organization not knowing the sad truth.
People “Light it up blue” on April 2nd for Autism Awareness Day, and they have no idea about what this organization is truly for.
4 Simple Reasons I Don’t Support Autism Speaks
If we haven’t met yet, hey friend, I’m Kaylene!
I’m an Autistic mom of six neurodivergent kids and a parent coach that helps parent-advocates parent their Autistic child with more ease.
And since it’s Autism Acceptance Month, I’m hosting a brand new event, and I want to invite you!
Here’s what I’m talking about: Embracing Autism Live!
It’s a one-day virtual event designed to help you create your custom plan to parent your Autistic child with ease. And you can get your Early Bird ticket for just $19!
Click here for all the details!
And now, let’s dive into the 4 reasons I don’t support Autism Speaks (and you shouldn’t either!)
Autism Speaks Doesn’t Help Autistic People
Only 4% of their huge budget goes towards actually helping individuals with autism and their families with their family grants.
Autism Speaks is arguably the largest autism organization in the country, and yet they really aren’t focusing at all on helping families who actually experience autism.
For a comparison, 22% of their budget is spent on fundraising efforts.
I simply can’t support an organization that pays their CEO such an obnoxious amount while they ignore the real needs of the families the organization claims to support.
Autism Speaks is Searching to “End Autism”
Autism Speaks has the ultimate goal of ending autism, by any means necessary.
The majority of their funding goes towards autism “research”.
Not research for improving therapies and equipment that helps individuals with autism, but research for a “cure” for autism.
They are also trying to find a prenatal test for autism, similar to the one that they have for Down Syndrome so that mothers will no longer have autistic babies.
As a mother of a child with autism, I wouldn’t change a hair on his head. His autism does not define him, but it definitely plays a role in who he is. I would never take that away, and I would never, ever, wish that he hadn’t been born because of his autism.
And frankly, as an autistic person, I can’t believe an organization that claims to represent me honestly wishes I were never born.
There is Not One Member of Their Board With Autism
Autism Speaks is one of few disability charities that refuses to include individuals with disabilities on their board or in leadership positions.
They are trying to make decisions regarding the future of autism without consulting any individuals with autism.
In fact, after being criticized so heavily for this, Autism Speaks added John Elder Robinson, an author and autism advocate who has autism, to the board.
He later resigned because the organization had no respect for individuals with autism and he could no longer align himself with their beliefs. You can read more about that here.
For those who say that it’s simply that there aren’t autistic people interested and qualified, the Autistic Self Advocacy Network’s board includes several autistic self-advocates.
*Update: Autism Speaks has responded to this criticism and has added autistic members to their board. While it’s a teeny, tiny, baby step in the right direction, it doesn’t rectify the damage this organization is done.
Autism Speaks Uses Disgusting Marketing Techniques
Autism Speaks says that they are all for spreading “awareness” of autism, but in reality, they are spreading only fear.
Over the years they have produced some really terrible videos to market their organization that portray children with autism as something to fear.
One of their videos is a commercial called “I Am Autism” which you can find on youtube here.
It shows like a horror movie including lines like “I know where you live” and “If you’re happily married, I will make sure that your marriage fails” and “You are scared, and you should be”.
They also made a movie called “Autism Every Day” where mothers talk about how difficult their lives are because of their children with autism with their children in the room.
Including a mother who says that she contemplated driving off a bridge with her child with autism, but only didn’t because she also had a neurotypical child.
Seriously. She says it. You can watch here.
Overall, I just cannot in good conscience support autism speaks as the mother of an autistic child or as an autistic person myself.
I know that these aren’t common knowledge facts, but as you know more, you can do more.
Please do not support this organization. If you are looking for autism organizations to support, please check out the Autistic Self-Advocacy Network.
And if you’d REALLY like to support more acceptance and understanding of autistic people, grab this free Autism Signs Cheat Sheet to share with others!
Loved this post? You might also enjoy…
- 5 Shocking Reasons NOT to Light it Up Blue for Autism Acceptance Day
- 5 Things to Do Instead of Light It Up Blue on April 2nd
- Autism Speaks Partners With Abusive “Therapy” Center
- Autism Therapy Red-Flags All Parents Should Watch For
Thank you for sharing this information. This is very interesting to know. You never know about some of these big organizations what exactly is going on behind the scenes until you dig a little deeper. I also appreciate that you gave some good organizations to support instead!
Mom on the Move recently posted…Say No to Things You Need to Know Before Kindergarten
You’re very welcome! That’s exactly why I decided to write this post. If you aren’t researching, it’s impossible to know what’s really going on. So glad that you stopped by!
Thank you for this information I will be sure next year for my birthday to not allow all my gifts to be contributed to this. As a grandmother of a child on the Spectrum, I really want to do something to better the future 4 people living on the Spectrum. What do we do? Your exposure may have started the people running this 2 be more aware and allow more people on the Spectrum working with them. I tried to go back and find out where the money went to that was donated from all my friends on Facebook for my birthday but there’s no follow-up button to go find what was contributed. My friends said they needed a receipt to claim it from their taxes that was never issued. So basically this is all tax free money to them and God only knows where it went. You have any heads up on this?
I’m a huge supporter of the Autism Society of Minnesota and all affiliates – we are the exact opposite of Speaks- boots on the ground supporting individuals and families every day. Check our http://www.ausm.org
When the media rails against doctors who think that there’s link between Autism and vaccines they’ve been known to quote Autism Speaks who stance is that there is no link.
Even a stopped clock is right twice a day- IOW even people who are generally wrong sometimes say things that are correct.
If I may say so, Autism Speaks sounds like a real POS organization.
The rest of my family supports Autism Speaks, but I don’t. I wouldn’t create a group called Oboists Speak because I am not an oboist, so why is this all-NT run organization so popular?
I absolutely agree with you, Anna. I don’t think that anyone who is neurotypical will ever fully understand autism. I will forever advocate for my son, but I know that his voice advocating for himself will always be much stronger.
My best friend has a younger sister with autism, and ever since I found out I have been researching ever since.
Finally, after more than 70 years of worldwide research the two main pieces of the puzzle can be put together and then all the other pieces fall into place. At first glance the answer seems improbable but after 70 years of research it was obvious that the answer wouldn’t be obvious. There are several reasons that the answer wasn’t found before, all mainstream researchers are medically trained and autism is not a medical problem it’s more of a physics problem. These researchers are extremely fact resistant and refuse to consider anything but a medical cause. Another reason is that one of the two main pieces was unrelated to autism and had no connection to autism at the time and finally the data from the second piece was considered a symptom of autism and not the genetic factor.
In 1998 a study using EEG technology was conducted to determine the impact of fluorescent flicker (strobe) on humans. The flicker distorted every one’s brain waves but the most notable finding was that the faster your visual response time (VRT) the GREATER your distortion became. This is the environmental component of autism. It has the capability to distort brain waves enough to cause autism in a fragile developing infant brain.
In 2013 the University of Rochester did a study on a group of autistic people and found that their VRT averaged twice as fast as normal. The fast VRT allowed for large brain wave distortions and is the reason they are autistic. This is the genetic component of autism that researchers have been looking for.
An infant that inherits a fast VRT is predisposed to becoming autistic. Their fragile still developing brain is receiving very distorted information when exposed to fluorescent flicker causing improper neural connections and pathways leading to autism.
Major studies around the world prove that vaccines do not cause autism yet parents continue to see their children regress into autism after being vaccinated. This understandably drives the anti-vaxx movement. What they have no way of knowing is that the exam room with the door closed is the most concentrated flicker environment possible. This is what’s causing the regression, not the vaccine.
It’s well known that males (hunters) have a faster VRT than females (gatherers) which means that their brain waves are distorted more than females. Bell curve calculations indicate that about 6% of males and 1.5% of females are predisposed or 4/1. However the slower flicker in countries that use 50 HZ electricity put more children at risk but the percentage gain for females is greater than males making the ratio closer to 3/1in the UK, this has been confirmed by the University College of London.
There are 350,000 Amish, some vaccinated and others not, no electricity, no autism.
An increased exposure to fluorescent light, an increase in autism, NICUs and day cares or just the need for more illumination, short winter days resulting in a seasonal variation or the abnormal amount of overcast days of the Pacific NW causing an increase in autism.
I could go on and on but if you’re not convinced by now there’s no point.
I don’t want to know why I’m autistic, nor do I want a cure. It’s a fact of life for me. It causes struggles, but if it weren’t for being autistic, I wouldn’t have some of my best friends, in real life, online, and imaginary. We don’t need this information. I don’t need it. This is a big part of who I am. Take the autism away and I’m an empty shell. Without my connection to Aza, Ash, Luka. Without my Vocaloid obsession. Without my quirks. Without my artistic skills. This is how I was born, this is how I will die, and I don’t want or need a cure. As such, please kindly fuck off.
Interesting! Thank you for pointing out these little known facts. I wish more people would do the research into organizations like these.
Nicole Schwarz recently posted…Preschool Aggression: Prepare, Plan and Repair
Thank you for reading! It can be hard when an organization claims to be helping people. I would have no idea if my son hadn’t been diagnosed!
Interesting article. Are there any organizations that you like?
Nell recently posted…Get Outside & Connect: Investigate Worms
Yes! The Autistic Self-Advocacy Network and the Autism Society are some of my favorites.
I support Thompson Center for Autism & Neurodevelopment Disorders, University of Missouri. I was very impressed when I toured the facility.
I had no idea. And I’m sure a lot of people I know have no idea either. I’m glad I read this. It goes to show it pays to always look into an organisation before investing your time and money to support them. Thanks for sharing your perspective!
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I had no idea until we found out A-Man has autism and I started researching. It’s crazy how easy it is that an organization so popular doesn’t really help the people it claims. Thank you for reading!
Oh my goodness, I didn’t know! I have done the “Light it Up Blue” thing every year without knowing what was going on behind the scenes with Autism Speaks. So sad. I wouldn’t trade my daughter for anything in the world and I won’t allow her to be treated as “less than” just because of autism. Thanks for writing this!
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Isn’t it so sad that all of this can happen and a huge majority of people don’t know? They paint themselves as a charity for autism, but the behind the scenes is so much scarier!
Thank you for this information I will be sure next year for my birthday to not allow all my gifts to be contributed to this. As a grandmother of a child on the Spectrum, I really want to do something to better the future 4 people living on the Spectrum. What do we do? Your exposure may have started the people running this 2 be more aware and allow more people on the Spectrum working with them. I tried to go back and find out where the money went to that was donated from all my friends on Facebook for my birthday but there’s no follow-up button to go find what was contributed. My friends said they needed a receipt to claim it from their taxes that was never issued. So basically this is all tax free money to them and God only knows where it went. You have any heads up on this?
Wow How incredibly narrow and myopic is your post. Autism Speaks doesn’t hide what they do. They don’t advertise $$ for families. AS has been clear since its inception that they raise money for research. And how research is critically needed. To provide money to families for programs, etc. etc. takes on an entirely different dynamic that our federal government would love to interfere with.
AS is probably the most influential organization daring enough to challenge Congress concerning people with autism and make them hear the autism community. Are they perfect? No. But they don’t deceive. Mr. Robison is brilliant, yet he is not the only person to leave a company because of differing views. AS has a ton of resources for those needing it. Being involved with AS allows people & families to connect with others who can guide you with everyday challenges. You might even meet someone…for a lifetime..who simply “gets it”.
I enjoyed reading your post and seeing all of the reasons why you write. I also learned a lot about Autism Speaks – I had no idea of their intentions or where their fundraising money goes towards. Wow…I wonder how many people don’t know this.
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I’m glad that you enjoyed the posts! It is scary how so many people have heard of the charity, but they often don’t know of the organization’s intentions.
Kaylene I have a son that has Aspergers syndrome, he’s 20 yrs old has worked at McDonalds for 2 yrs now he’s finally interested in getting his license to drive he’s always been too nervous, I want him to take the driver education course first, do you have any suggestions on a place that’s good teaching it to an Aspergers individual
Oh Carolyn, I’m sorry I don’t have any tips. My children are still young (6, 4, 2, and 2 months) so we haven’t tackled driving yet. Praying you find something that works well soon!
Carolyn,
I don’t know about the area you are in, but when my younger brother was ready to learn, my mom contacted my aunt that is a local police officer. She was advised to check with a driving instructor from the police department. That might give you a start.
Wow congratulations your son seems to be doing great a job and driving. I have a 19 year old son with autism. I am not sure where you live but there are driving schools in my area (San Diego California) that give eight hours behind the wheel. Which is great because it gives them confidence each car is equipped with a second brake peddle and steering wheel to ensure their safety. Once they are done with the lessons California requires 60 additional behind the wheel by the parent which is what I am doing now. But the confident and peace of mind the driving school gave was essential to getting started. It got me $250.00 for eight hours of instruction. I have found that as our children get older less and less resources are out there. Best of luck to you and your son.
The thing that bugged the crap out of me about Autism Speaks is the name. My son with an autism diagnosis is NON VERBAL. Autism *doesn’t* speak at our house, thank you very much(to them) for that annoying and rude reminder. :P
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It’s because they want to speak FOR our kids. So frustrating. Have you had any luck with devices for your son?
I don’t like the name much ether as I didn’t speak at all till I was 7 years old. Autism didn’t speak in my mum or dads house for years.
I thought it ment that the organization speaks for the concerns and supports person with Autism.I didnt take it to mean Autistic people dont speak
But that’s the thing, this organization doesn’t speak for the concerns of autistic people or supporting them.
Oh I couldn’t agree more. My brother is non verbal and the name has bugged me for many years every time I hear it since the day they formed as all I have ever wanted for my brother was for him to be able to speak. He does now know some sign but not a lot. It’s so frustrating because he really is quite smart in his own way, but speech has been elusive.
Jason please don’t give up. Please get him a device!! Trouble is people assume kids with autism who don’t speak are cognitively disabled. That is a lie. The words are in their heads and with a device he can demonstrate that to you. He needs a speech assessment and your insurance should Pay for the device. It will take 6 years for the child to master language. Be patient, don’t give up.
The problem is the majority get fooled by this organization, the public needs to know what they are actually about, self serving and not doing the community any real service. Good post.
Thank you, Paul!
Amen! You will not ever see me post a link to or like Autism Speaks! They tried to show they were making an effort to improve but only in response to the negative feed back about the amount of money that was going directly towards families. I’m so glad you posted this! It was big news on my page (only parents and educators of individuals with autism) I don’t see posts from Autism Speaks being shared anymore. More shares like yours will decrease their eligibility for grants and political funding.
It’s awful that they’re so popular, isn’t it? I really hope that posts like this help people to understand so they just run out of funding! Thanks for sharing your thoughts. <3
I am autistic and Autism speaks is a hate group that wants autistic people to not exist. How are they so powerful and why haven’t they been stopped. They would commit genocide if given the chance.
I too agree with your sentiment and have never been impressed with the major Autism funds..but I am for research. I felt as you did when my two kids on the spectrum were young. I too went into Full blown research mode, everything was for a purpose and we would learn to live with this besides my kids were sweet, gentle and kind.. My kids are now 20 and 21 and life is extremely difficult for the 21 year-old and my 20 year-old has no life. He is totally trapped in phobias, anxiety, and other issues I won’t go into. I never dreamed my kids would end up getting worse not better.
Hopefully your child will continue to thrive. I love my kids with my whole being and would die willingly if it could help them but I cannot wish this for anyone. I know too many parents with older kids who devote everything to them but the kids and parents are drowning! And there is little help out there unless you are lucky enough to live in the few areas that actually have decent services.
I do agree that we need more services widely available, and there is research that should be done about new techniques and therapies that can help those with autism. I do not support research towards the goal of killing autistic babies. I do not support research that wants to change who my child is so that he is more acceptable to society. There are negative sides to autism, without a doubt. We need research on how to further assist individuals to navigate the waters of those downsides. We do not, however, need to research ways to “end autism”. Thank you so much for taking the time to comment with your thoughts! We are in total agreement about the lack of services!
You don’t believe in research to find a cure? Are you. Suggesting that if there was a miracle pill that could remove the effect of autism in your child that you would NOT take it because you love your child just the way they are? That’s crazy! I love my 14 year old son dearly, but in a second I would give him that pill and happily change a huge part of him…. And allow him to speak. … And allow him to interact with his peers…and yes he would be different but I am certain that he would prefer that life if given the choice. Helping families is important-obviously-but we need to find a cure. Not to kill autistic babies, but to cure the brains of the next generation of autistic kids.
I am suggesting that if there was a pill that would take away his autism I would not use it. His autism is not a tragedy, it’s a neurological difference. If we “cure” all autism or kill autistic babies (which really is a goal of autism speaks), how many Mozarts and Einsteins would we as a society lose out on? I think we need to cure cancer, we need to accept and embrace autism.
There are pills to help ease the symptoms of ADHD, Bipolar, Depression and any number of neurological differences. My daughter is completely non-verbal and if there was something I could do to help her unlock her mind to help her have meaningful communication I would. It kills me to see her hurt herself because she cant interact with her parents, friends and peers. That despite being incredibly smart she is in Special School District schools and not going with her classmates. Thankfully shes on the very mild end of the spectrum. Not all autistic individuals are mildly quirky
We have several friends whose children have become increasingly violent and isolated with age. If a pill would make their daughter safe to be around her family I know they would give it to her. I love my daughter, I love her vivacious personality and exuberance. But if I could make life easier for her I would
People, autistic and others, communicate and interact with out speaking, and plus your kid could use a dynavox or similar adaptive tech device so she could also talk in “English ” but she does communicate and interact and connect, just nkt in ways you understand
Anyone who believes that autism is something to be cured or aborted is wrong. Autism isn’t something to be cured because it is not a disease or a disability nor does it mean that person is any lesser than a non autistic person just because someone with autism can’t communicate or behave as effectively that doesn’t mean they have no thoughts or emotions. Also it is not abnormal people who are family of a person with autism to wish that they had a pill or a magic wand to wave over the child and make all their problems go away but that’s not the way to help your child. Support is the way because the only people who are the real people to help are the people who care not autism speaks but real people such as professionals or family. I was lucky to have that kind of help and I will admit there are struggles but there are struggles with anything in life even in mine but as someone with autism it’s part who I am and probably who any of my future children will be so no I wouldn’t change anything about myself.
My partner was diagnosed with autism only recently while I was pregnant with our son, who is now 15 months.
Not only did my partner go through an entire loop of essentially saying if our son was going to have autism, he would think it’d be better for him not to be born (he was emotional, and he was dealing with the emotions of his own diagnosis)..but he also talked about the extreme guilt he’d feel, as he wouldn’t wish his experience on anyone.
He is someone I’d consider extremely “high functioning” (respect to the author, as I know you don’t appreciate these terms)..but he was definitely one that got away with just having “quirks”, being kind of “weird”, and clearly dealing with anxiety.
So. Our son does now show signs of potentially being autistic–hence why I’m here researching and reading!–and I’m fully prepared to encourage all of his amazing strengths and help where I can for him socially. But honestly, I think it’s going to be devastating for my partner if our son does come up with a diagnosis.
And I can 100% say that HE wishes there was some kind of pill he could take that would eliminate some of his societal struggles. (Then again, it’s not so black and white, as he wants to try ritalin or adderall but hasn’t yet due to concerns of it being legitimately damaging to his health.)
It’s not something that’s easy or clear for anyone, so I feel it’s a discussion that should be open without shame. People are willing to feel what they feel. A mom using a cochlear implant so her deaf child can hear isn’t saying her daughter isn’t enough if she’s deaf, but rather a caring mother wanting her child to have the same opportunities as her hearing peers. I see nothing wrong with that when the intentions are pure and clear.
All that being said– I’m not for Autism Speaks. I completely agree that THEIR intentions and THEIR way of going about it feels extremely icky.
Forgive me for my reaction, but if there was a pill to take away autism, I would give it to my nephew in a heartbeat.
He has very mild autism where he only has trouble with eye contact, and he has worked so hard in his 17 years to get over the “talking to his peers” thing, that makes me so proud of him that it hurts.
But now people are taking advantage of his naive nature and borrowing money off him (never to repay it), calling him a retard, and basically treating him differently which is so, so unfair.
I would take away his autism away in a instant – not for anyone else, but for him. He is the most special person in the world to me and it hurts me that people know that they can take advantage of him because of his condition. So, would I change that with a pill? – I have no hesitation in saying yes.
Please do not take this as any form of criticism or disagreement – we all have our own opinions. I love the fact that this site is raising awareness and provoking discussion.
However, what I will say is that the comment in the article about a pre-natal check for autism “so that mothers will no longer have autistic babies” brought me to tears.
That is so wrong on so many levels.
We agree on many points. The reasoning behind their efforts for a prenatal check are horrifying to me. As far as the difficulties your nephew is facing, I agree that that is a huge problem. Wouldn’t it be better, however, if we could change society to not take advantage of him, or find further ways to support him to understand social complexities rather than taking away his autism which (potentially) is such a large part of his personality?
Although I can see where your coming from on a lot of things (there should be more funding going to the families etc.) I also disagree with some. There is nothing wrong with searching for a cure or a way to pre-natally Identify autism. I am currently a behavior technician and am studying to be a BCBA and I’ve worked with children with Autism since my cousin was diagnosed when I was 12, so I agree that funding DOES need to go toward treatment. However, I don’t think it’s fair to say that it also shouldn’t go towards looking for a cure. While you may not want one, that doesn’t mean others wouldn’t. It reminds me of when parents of high functioning kids says they don’t consider autism a disorder. It may not be debilitating for their kid, but that doesn’t mean it isn’t for someone else. I’ve worked with individuals who are 26 years old and can not live with their families because they are so prone to violence, they smear feces on the wall and masturbate in public, there is nothing wrong with parents of those individuals wanting a cure or considering their child’s situation to be a disorder. I’m not defending the things Autism Speaks does, there are a lot of better organizations, but certain aspects of this bothered me as someone who works with individuals with Autism. I will always Light it up Blue on Autism Awareness day because, regardless of what I feel about Autism Speaks, it brings awareness to the cause.
You do know what natural selection is right. Evolution isn’t perfect and just as their are high functioning individuals some who are more average intelligence to those who are geniuses. There are also those who are severely affected who are at the opposite end of the spectrum. You think I don’t know there are people so severely affected that they’re disabled by autism and how it affects their families because let me tell you it’s no picnic for high functioning individuals and their families like myself. Do you even know what that would mean if autism speaks had even created a pre-natal test. It would mean every new mother and father except maybe for a few (such as parents with autism) would start aborting offspring because they though their autism is bad. Do you even realize that’s genocide because you’re sentencing both high functioning and severely disabled to death because of the crime of existing. As well as what happens to the people the few who remain to have autism and their children we are already considered less than and belittled by so many how much worse do you think that would be ?
That old commercial for “Autism Speaks” has been taken down from YouTube, but it is included in this video blog by a young man who has Autism: https://youtu.be/rMPNvcJtIR8. I couldn’t believe it when I saw it! It pretty much implies that Autistic children are terrifying little demons out to deliberately destroy their families and that they need to be gotten rid of. It reminded me of a horror movie from the 1960s. They never really quite getting around to telling you just how these monstrous kids are going to ruin your life and rob you of your money, but you better send your money to them instead, so they can protect you from a fate worse than death! It would be hilarious if they weren’t actually getting rich off of people’s gullibility and ignorance. Anyway, thanks for bringing this issue to our attention. I had never heard of “Autism Speaks,” since I live in Canada. They sure as heck don’t speak for me and I’ll advise my American friends not to send them any money.
By the way, back in the aforementioned 60’s, my mother was told that I was hopelessly retarded and would never amount to anything. The doctor advised her (with me sitting right there) to “put me away” in a government institution, forget about me and have another baby. She took me to another doctor! I now have an honours BFA and four college certificates. I’m glad they didn’t have a prenatal test for autism back then!
Thank you so much for your comment. You and people like you and my son are the reason that I write these posts. Thank you. :)
I agree with many things from your post but this reply was just horrendous!
I hope you also write for people who will never be able to read, who will never be able to find this webpage and “voice” their opinion. Because that is also autism! Not only Mozarts and people with 4 college certificates!
Ana, by “people like you” I meant autistics. <3 I 100% support all autistics, regardless of their abilities or struggles.
Thank you for this post. I had no idea. It is sad that so many organizations that are supposed to help people really don’t. My son has not been formally diagnosed, but I would not change anything about him. And the commercials you mentioned sound awful. My son is not someone to fear. He’s just a little different from others. But being different is what makes this world a better place.
Thank you so much for writing this. The more people who wake up to that vile organization the better – and you’re helping. I don’t know any people with autism who support AS.
Is autism a disability? Sure. Is it also a fundamental part of that person’s identity? Also yes. To demonize these people, and to place the desires of others over the needs of the people with autism, is repulsive.
They must have taken lessons from the Alzheimer’s Association. I could almost match your reasons, one by one, with why I don’t support the Alzheimer’s Association.
THANK YOU!! I would’ve had no idea. I can’t believe that about their campaigning. How absolutely offensive! That really makes my blood boil. Oh I can’t believe this. 😔 Thank you for raising awareness.
I am an Autistic person myself and as I see the way the world is going is downright pitiful. Autism Speaks is not an organization for Autistic People it is an Anti-Autism hate group in its own regard. Autism is not a disease, or disability, it is an advantage of the next evolution phase of humanity. Tell me, why was, Mozart, Beethoven, Michelangelo, Thomas Jefferson, Einstein, Nikola Tesla, and even Isaac Newton Autistic? I AM AUTISTIC, I SAY IS LOUD AND WITH PRIDE. We need to rise up and show the NT’s what they’re really dealing with!
Hi, I’m really interested in your article. Is it possible to send me this is text format as I would like to share with the autism advocacy group in my company. We are considering affiliating with Autism Speaks and I want to make my case against it. Thanks!
I don’t see the problem with trying to find a test for autism before birth. As someone who has worked with severely autistic kids and adults (and also very high functioning individuals), I have seen first hand the extreme pain and fear that many paresnts go through. Unless you’ve been severely beaten by your child on a daily basis, you have no idea what it’s like. Every single day I get hit/kicked/punched/hair pulled and have had sever injuries from some of my clients. But I love my job and I get paid to do this….I see the despair some parents have…haven’t been able to even go on a weekend trip in 30 years, or even go grocery shopping sometimes. Yes some individuals are able to function very well, but I absolutely hate when mothers of non-aggressive or higher functioning kids act like that is the only kind of autism. I’ve seen the worst of the worst…I’ve seen parents who have to lock themselves in a room bc their 27 year old non verbal son may beat them silly. It’s not fair to these families to dismiss the idea of prevention or a “cure”.
I think it would definitely be good if there was a cure or at least a way to help people in a big way with severe autism but your comment makes it all about the parents/teachers. I think it is much harder to be autistic and feel that way and not have a good way to communicate and feel angry and not have a good outlet for emotions than to be the parent.
So when was this published? I love what you said and would like to cite it.
I have a autistic brother I like the way he is and I don’t want it to change. Autism speaks wants to change Autistic people to normal people. That’s like asking the sun to stop providing light! This is coming from a 10 year old that has a 3 year old brother! You can’t change the way people are! There’s nothing wrong with being Autistic!!!!! I almost started to cry reading this article. It makes me so angry knowing that Autism Speaks is trying to stop autism. What are there hearts!?
Pray for Autisim
You make a really good case. I dont’ agree with everything but I do think that we must be very careful what we support. I myself want my son to find his own voice. And he does speak with his emotions and with his actions, but it’s difficult. He can’t express everything so he often has meltdowns. That isn’t easy. It does make going out difficult. I love my son. I love him to pieces. He just turned four.
I have a lot of feelings about this article, in the end though it is your experience. I can’t say you are wrong. A lot of other articles and criticism is circulating, I can’t say they are wrong. This organization has a lot to answer too and may very well refuse to answer to it because those people on that board think they are doing a service, and believe in their cause. Even while the people they profess to serve are increasingly against them. So yes this does say something about the organization. How will it survive if it doesn’t listen and change course? I don’t think it can.
So thank you for stating your experience so I may know.
I always check the amounts used for the actual purpose of any charity. Everyone should…if 90% or more is used for the project then, and only then do I donate. Try Give Campus. It is organized by students at different colleges and gives 100% of the giving. You can check different colleges to see if they have a campaign for your giving. I gave to Coker College to bring clean female products to Myanmar. They are giving them enough for a machine to make the products. Giving them clean products and jobs. Think before you donate.
We have had little success with any national “autism” organization assisting us with a grassroots project that is designed as a unique experience in nature for visitors with ASD but also is appropriate for all ages and abilities. We are building The Autism Nature Trail (The ANT) in Letchworth State Park in New York, between Buffalo and Rochester (voted the #1 state park in the nation). Check out our placeholder website at: http://www.autismnaturetrail.com and send us an email if you’d like more information!
Thanks for the article. It’s very interesting. As for the name I took it for the people(me in my son case) speaks for them. I never heard of autism until my son was diagnosed. Me myself also done a lot of research as well. But I have never been the type to just give to charities. I find other ways to support the cause because you right they could be something else with the money. I volunteer, I organize and I inform are all ways to help support autistic people and their families. I like the research but I don’t take it as if autistic never existed. I took as a way to diagnosed early so we can better understand and start treatment soon as possible. If there was a test to inform me that my son was autistic, I know I would have been better prepared for it and not take some of his actions as being stubborn or just plain out ignoring me. As far as the mother talking about her feelings and her everyday life was actually refreshing. We all have moments where we feel down, frustrated or at our wits end. Inside of keeping them inside sometimes it helps to talk about it. You never know who may be going through the same thing and can offer some advice or assistance. (Just as you did with this article.)Just like everything else there is a lot of changes that this organization needs to make but just like life it’s a trail and error process. But giving feedback like this open their eyes and help make necessary changes.
So, you want to ignore all the low functioning children who are struggling daily, and their families are struggling? Decide that’s the way they are “supposed to be” and we shouldn’t help them by finding a cure??? Because you’re lucky enough to be on the high functioning end of the spectrum?? My son’s high functioning and I would still jump at the chance to take him completely off the spectrum. I don’t want to change HIM, he is not his autism, I want to take away his struggles. That’s like saying you wouldn’t cure blindness or any other disability because that’s how they are and you wouldn’t change a thing about them!!
Interesting article, one thing though… my brother was terribly bullied in my county’s “top school district.” These great schools (sarcasm) never picked up on his Aspergers. It was not until his freshmen year at a private high school did someone suggest to my parents for him to see a special doctor. For years my parents bought all the books and met with all the doctors. This emotional roller coaster took a toll on my entire family. At this point, he hated school so much because of the bullying that he dropped out without a high school degree. My parents did everything they could. Thankfully, he has job opportunities with our family business, but he could have done so much more of he was diagnosed sooner. I do not think it is a fair assumption that mothers would choose not to have their babies if they were diagnosed. If my brother was, my parents would have had much more time to plan: pre schools, summer camps, high schools, college, a better future, etc. You are extremely lucky to know that your children at a such a young age are on the spectrum. Many other families were/are in very different situations, where an early diagnosis would have allowed them to provide their autistic child better care.
While I respect this mom’s right to choose the organization that she would like to support, I believe that she is incorrect about Autism Speaks. Autism Speaks was founded by grandparents of children with autism and run for years and still is today by parents of children with autism. They have a very strong vestment in this organization. Autism Speaks has 4 pillars to their mission… Research, Advocacy, Awareness & Family Services. Yes, a much smaller percentage goes to family services, but if you think about it Family Services doesn’t need as much as research. If you have $100,000 that can buy you a whole lot more family services than research, so you really have to look at the cost in comparison to the percentage. Autism Speaks is a research organization, they have never denied this fact. They used to have the word cure in their mission statement, but no longer do because they were so misunderstood for it. A cure can mean a lot of things to a lot of people. Everyone, yes everyone, has signs and symptoms of Autism. Its how many you have and how severe they are that give you a diagnosis. So a cure for a person who cannot speak because of their autism, may be the ability to speak. A cure for a person who cannot leave their home because of their sensory issues, is the ability to settle those sensory issues and leave their home. As long as I have been supporting this organization, I have never once heard anyone or seen any research that is designed to eliminate people with autism. Educate and inform, yes, but eliminate, no. Remember all those parents who support and work for and run the organization… none of them want their child eliminated. Autism Speaks has had and will continue to have (as the opportunity presents itself) board members and/or other representative of the organization with autism. As for the messaging of the ads, movies and commercials… this is an evolving process. Most of the ones she is talking about are 10-15 years old. Think about it, if AS represented autism in a positive light all the time, how much funding would people give to something that is “so wonderful”. Yes, people with autism have true gifts and, in my opinion, are actually superior in intellect. But, if that is all that is portrayed, no one will donate because they won’t see a need. Additionally, Autism is a spectrum disorder. If you have someone on the spectrum who is very severe, and I know many, life is very hard for them and their families who seek to understand them and what they feel. Statistically, Autism knows no boundaries, families of children with autism have an 85% divorce rate and it IS scary. Again, I respect this woman’s right to choose the organization she supports, but I cannot discount all the good that Autism Speaks has done. Most people are aware of Autism today because of this organization. We have laws in place today because of this organization. We know things about Autism today because of the research of this organization and there are many Resources available to families of those with Autism because of the grants given through this organization. No organization will ever be all things to all people. Humbly, the opinion of another parent of a child (now adult) with Autism.
Thank you, Barbara. This was a well balanced rebuttal.
I will add that autism covers a huge range, especially since the criteria for diagnosing autism has been expanded by the DSM, then expanded again, and expanded yet again. There are mild cases of autism, and there are SEVERE cases of autism. There are parents that fear for their lives after being beat up by an autistic son who is stronger than they are. And there are autistic people who are so non-violent they can’t even assert or advocate for themselves, never mind hurt someone else. There is a huge range here.
So when you see a video by AS showing a mother that has locked herself in a room, that’s real for some people. I realize the author’s experience is different. My experience is different. But I know people who have very real, very serious safety problems. If AS shows what some people experience, that is OK. That’s the truth. If they ALSO show what other people experience, that is also OK. That is also the truth.
AS is the only organization that has established any meaningful recognition outside of the autism community. That is success.
Children are born with cleft lips all the time, and we know what to do to correct that. It is high time we took mental or personality conditions seriously. If a cure can be found, it is up to the patient whether they wish to accept it. But let’s at least offer it.
It’s not just “Autism Speaks” I don’t support. I am also against psychiatric counselling (totally inhumane) and prescribing antipsychotics to those on the spectrum as a way of “normalising” them and controlling their “inappropriate” anger (of course, most of us now know those doctors who prescribe dangerous drugs are in bed with big pharma). And if someone was to knock on my door one day and inform me they had made a deal with God, Allah, Buddha, Jehovah, the devil- any higher power, that would mean my autism could be taken away just like that, ensuring me the chance of a so-called normal life, I would tell them in no uncertain terms to “take a hike.”
I may have wanted a “cure” once upon a time, but not now. I wouldn’t be me, and I am slowly but surely becoming more at ease with “me.” Why would I want to be “normal”? What is that, anyway? If it means being “plastic” (even without Botox) and believing you’re a superior being whose opinion matters more than those of the “minions”, well, thanks, but no thanks. I’ll stay as I am. My choice.
I honestly cannot agree with you on that.
The medicine prescribed to me has done nothing but make my life better.
It doesn’t alter my personality or turn me into something else, but it does help me focus enough to do well in things like college classes and keeps me from having to deal with depression.
The medicine prescribed to me was one of the best things I have been given by the people supporting me.
You’re not susceptible then.Good to know. As long as you can live with your choice, that’s fine by me. I know for sure I can live with mine: stay away from doctors who prescribe antipsychotics.
Will, do you take medicine for ADHD/anxiety symptoms, or can I ask what you take and how it helps? My partner has been considering meds for these that would increase energy and focus but has been scared to take the leap. I’d love your thoughts, as I feel his beliefs are aligned to yours– that meds would improve his life without changing HIM.
Thanks~
Interesting read!
Make sure to use person first language!
Ex: child with autism, instead of autistic child.
Person first language shows respect for the individual you’re speaking about- letting the person be a person and not immediately identified by their diagnosis.
I use identity language because it is what is preferred by autistic people (I’m autistic myself). It’s parents and professionals that prefer person-first. :)
I prefer to be referred to as autistic, because saying I have autism carries unpleasant connotations to me.
A person does not have deafness; a person is deaf. A person does not have blindness; a person is blind.
What a person has is a disease. A person has the flu. A person has smallpox.
Autism is not a disease; it is simply a part of who I am and how I was born. Therefore, I am autistic in the same way that I am male and am right-handed.
Hey, I’m a high school student and I was diagnosed with ASD last august. I’m doing my English summative on misrepresentation of neurodiverse people as well as on ASD and ADHD with my sister. I’d really like to include your article in my research, and I also wanted to reach out because you seem pretty cool. Can I include some stuff from your article?
I have mild autism and I had no idea this organisation existed but reading about what they do makes me feel bad, if they did find a cure for autism I would reject it because I can’t think of my self with out autism, to get rid my autism would be getting rid of who I am as a person, I can’t think of my self with out it
Thank you for the information. I was supposed to join the group. Good that I did research first before joining. Thanks again.
do you know what I also hate is the parents who put the autisim speaks frame around pictured if there kids on Facebook. my sister has autism and she or other people don’t need to paraded around. If they want to put it up why not do it on yourself. Oh wait they don’t want everyone to think they have autisim. Well why does your kid then. My stepdaughter mum does this too. I know she’s her child so I can’t say anything but she’s self centred and thinks only how hard it is on her not her daughter.
I’m not in the US but have heard plenty about this organisation and worse things that go on with the ‘treatment’ of autistic people.
I noticed some outraged commentators on your post hotly defending the idea of a cure or of the work done by this organisation. I won’t comment on the organisation, but it always strikes me as interesting that the people who want a cure are always the parents and the carers. They’re people assuming that how they see the world is better than the way the autistic person does. That society doesn’t need to be more integrated, but the autistic person needs fixing or curing or even prevented from being born in order to stop these parents and carers from suffering such hardship from this condition. I’ve only ever seen autistic people advocating a cure because they don’t want to let down their family or such any more…because of something beyond their condition that is a problem outside of their autism which society isn’t addressing.
The idea of a prenatal test is fundamentally offensive to me. I resent being told through media channels and from idiot parents that my life is either worthless or will never amount to anything. I have been told lots of times that I won’t achieve anything or be able to do the things I want to do, but I have done every single one of them. And why? Because behind me I have a proper support system known as MY FAMILY. And even though we had a LOT of struggles and difficulties when I was growing up, they see me as ME, not as autistic problem needing to be solved. This year I finish my PhD. Last year I lived abroad. I’ve worked with people – autistic kids, general public, and teaching. I’ve given training on autism and I’ve helped change policy by being part of a disabled organisation. I’ve fought for my rights and I’ve won every time. My life is not worthless. If that test had been in use back when, I might not have had any of this life that I’ve experienced. I might not have written stories or visited places or made friends. And honestly, that makes me want to cry. Because I shouldn’t have to justify my existence, and I shouldn’t have to plough through bigoted comments from people who can’t empathise with autistic people, and think they are better off changed or gone.
I’m not blind to the extremes of the condition, although I do think that parental approach has an impact. I don’t think sometimes that people realise that autistic kids KNOW when their parents are disappointed or upset in their having the condition. Even if, like mine, they’re not, I still feel compelled to work harder to make them proud, even though I know they are proud of me already. It hurts me to have to feel that way, because it’s the ignorance that makes it happen. Autistic kids are not unempathic, nor are they imperceptive. They understand every single nuance of emotion and feeling in the people around them. Whether they can interpret and express an appropriate response to that is another matter – if you don’t like your kid’s autism, or want to fix it, or even (like that mum in the video) want to drive off a bridge and kill them – WE KNOW. All of these things, we know. I’ve worked with lots of kids with different kids of autism, and that was one vibe I picked up from all of them. Negative energy makes an autistic kid more difficult.
Autism is almost like a feral state. By which I don’t mean we’re all wild animals, but the native instict of fight and flight are much more powerful and it takes a lot longer for us to feel safe or secure. If the parents or carers who we need to trust in are conditional in their acceptance of us, we’re never going to settle properly. I don’t say it would cure all behavioural issues, as there are lots of triggers. But being accepted for who one is in one space at least is helpful. If even your parents don’t want you the way you are, who will? In my view that kind of judgemental approach is essentially emotional abuse.
I think there’s a lot more that needs to be learned from verbal autists about autism. We can’t speak for everyone but at least if we’re listened to a little bit, maybe more understanding can begin to grow. With non-verbal, I learned makaton when I was working with students and it seemed to work very well with autistic (and Downs) kids. I haven’t seen that mentioned, just people complaining that a person doesn’t communicate in the way they expect. To flip that on its head, the autistic person is waiting for you to communicate in a way THEY understand. I wonder if all parents have explored all those avenues, or if they just (as many seem to) expect an autistic person to ‘change’ and ‘be fixed’ so they behave ‘normally’.
In any case, autism is genetic. It comes through the genes and was probably in your child because it’s in your DNA. So this is something integral to the biology of your family. But it could be worse. You could have a kid who is a rapist or a serial killer. You don’t. You might have a kid who’ll one day be an artistic genius or a top computer programmer or who might discover the secret of life. But if you decide to terminate based on fear and a test before they’re born, you;ll never know.
I guess my point is to parents who want to change their child, you need to know your autistic person. Don’t assume what;s best for them, just because it’s what YOU did or what YOU want. And don’t make them feel like they’re somehow letting you down by being the person that they are.
Kudos for the original blog post for highlighting problems. Autism acceptance still has a really long way to go globally, but it’s nice to see autistic parents advocating in the right way, not just in the wrong one.
Hello- I’m writing a speech about Autism speaks for my class. Is it okay with you if I use these points as part of my research, provided I cite my source
Thanks for posting this blog. I did notice that the “I Am Autism” commercial link was taken down. For readers who still wish to see this video, here is another link to the video: https://www.youtube.com/watch?v=9UgLnWJFGHQ,
Thank you so much for the information about autism speaks…I stopped supporting them five or six years ago…when my twin boys were diagnosed with Autism at the age of two…I had my days of sadness…and then I prayed and ask the lord to show me what I can do to improve and help to make their lives a little bit easier…And then that’s when…A Cape grew out my back.
…and I started my own research…first…I bought a book call…ten things Autistic kids wish you knew…and then a book called Disconnected kids…that book started…(especially the author)…the next phase…then I found mamavation.com…and she is the one who got me to change my whole families life style of eating, and everything in my home from cooking tools to cleaning….Her book…is called…Green Enough…I have been following this lady…LS….since my sons were 5….Have I seen improvements?…ABSOLUTELY…she is the one who exposes what all the foods and snacks , fast restaurants are doing to our brains and bodies…and one day all the mother’s with autistic children will believe me….Autsim is forever…but I am the mother who is determined to help my boys be able to infiltrate society…and at the end I say…guess what an Autistic Kid just kicked your Ass!…(excuse the profanity).
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Thank you for sending my comment…
I apologize for my misspelling of the word….Autism…with twins on the brain…its sometimes hard to retain
Funny how most people here advocating for AS are parents, or Autistic people who were brainwashed by their parents and biased professionals. Do you people realize that you are basically advocating for genocide? You want autistic childrens to die and be replaced by some miracle child out of your dreams.
Is not autism’s fault that your childrens are abused or bullied. It’s the abuser and bullies’s fault.
When you see your childrens being abused or bullied, you go and blame them for being abused and bullied? What about you support them? Instead of blaming the victim?
As for cure, There is somethis I know I would like to “cure” in myself: prosopagnosia and ability to concentrate on two things at a time so I could get a driving licence and better my fine motor skills. But otherwise its a pointless goose-chase and they really should instead finance life-enhancing things and education.
Thanks for the inspiration! As a wife, mom, and aunt to wonderful Autistics I couldn’t agree more! Yes, there are challenges and we work on them constantly. But instead of attempting to get our family members “normal” we have decided to stand out instead! That’s why we started a Live Action Role Playing club and camp! Yes, NTs and Autistics get together and have a blast!
Dana Susan Beasley recently posted…Autism Awareness Day– Celebrate Autism ACCEPTANCE instead!
I feel lucky to have come to this post via Facebook (not always the case with FB! :). I want to thank you, and tell you that your son and you are beautiful. I will be sharing and exploring the organization you shared. Autism Speaks is not worthy of its name much less its predominance in society at large.
You are disgraceful, As a mother and nurse and advocate for Autism I find your negative propaganda a disgrace, the founder of autism speaks had a child with Autism and she also died of cancer and all the while dedicated her life and organization to advocating educating etc, fighting with Congress and politicians, the problem here is autism speaks organization objectives are not what you or others after the money thinking should be ,perhaps instead of the attacking out of spite an organization that is responsible for the awareness of Autism around the globe these days you should create your own organization and its objectives and raise funds , I am a member and I fully support Autism speaks and thier objectives and goals , thank you Bonita Houmita
Frankly as a brother to a non verbal Autistic, and one of an age when there was little to zero community knowledge or support for Autism (you say he’s ARTISTIC?🤬🤬) I find the name of the organization offensive. They should know full well that a sizeable percentage of Autistic folks are not verbal and don’t “speak” . I get what they are saying but still. I’m not easily triggered unless it’s something offensive related to Autism, especially the nutjob types like Jenny McCarthy who claim it can be cured, or worse, the types that lay blame with the mother. I have seen decades of burden and guilt my mother carries and it is haunting, and in part due to many public finger pointings at mothers over the years.
I am happy to have come upon this information. I am totally dismayed that only an estimated 4% of the money given to Autism Speaks goes to people with Autism and their families. Awful indictment on the organization. Having worked in non-profits, the model the good ones use is where 20% goes to administration, and 80% to causes/goals, hence the importance of goal-setting, and strategic plans. Unfair/dishonest distribution of funds caused a scandal in United Way in the 80s. Shame on Autism Speaks and all the other so-called non-profits that disproportionately put money in the pockets of executives instead of using it to support the PURPOSE.
Im autistic. We are the realest most interesting group of people. Far more creative than neurotypicals but boring douchebags in sweater vests make all the hiring decisions for ad agencies. Which is why Commercials are so lame. I want opportunities i have so much to give. Forgive me if I am not good in being full of shit in interviews. Contact me at bobbyhurleyjr@gmail.com
why on earth would anyone have kids these days when so much can be wrong with them? that’s their life and your life over. Adopt a normal kid if you want children.
Since my son at his nursery days was so called being autistic according to the society, I never admit my son is one. “Autism” is just a definition invented by a human being, and noone is perfect.If one claims he is perfect, it is just a motive behind. Since autism has no cure, there is no use coding children or adults to get autistic. If noone is able to find a cure, “autism” is never an illness, it us just a word.
To all whom are coded as being autistic, please do not feel end of the world, everyone has weaknesses, some just know how to disguise them but the ones who are being called autistic are just pure and genuine without acting, you are just perfectly true because you are being what you are as original, you are the best! Don’t give up and start learning to contribute and love your loved ones in this lifetime! Love…
I skimmed this article this morning and clicked the link to the “I Am Autism” video to see that they deleted it off their youtube channel. I looked it up on youtube then and watched the video and I was shaking after I saw the first half. I am autistic myself and I absolutely hate that video, I’m still scared of it. It hurt me emotionally since I don’t want to be feared by people. I don’t care if this article was from 2010 or something, I want to share my opinion on autism speaks. I would never donate to them and I will never let my family donate to them.
I thank you as an ASD adult so verrryyy much as you get what a lot don’t get. Never will they speak for me yep yep and some of the things they’ve gotten away with is in a way basic legal professional grifting, although on a larger scale. Just seems rotten and inhumane IMO. I know they accept donations to pay for the BOTs, exec’s, and to be ranked higher on Google as it’s very easy to see these patterns. The story about what they told a family with an ASD child during hurricane Katrina was devastating. Made me very emotional and upset that they made them feel bad for owning a home to begin with. Shame on them. You clearly are a Nerotypical ASD mom who actually has true compassion and sees that there are better ways which makes me happy in this moment. I propose some better things than the status quo. Acceptance being one, sometimes other things have been needed for me, but the biggest hurdle is the entire education and working environment is based on Nerotypicals, factory type model which leaves us without much realistic choices. Just because an organization says they hire those with ASD, doesn’t mean it’s true for all on the spectrum. Microsoft is an example of doing something, but they seem more keen on hiring savant types as others on the spectrum have had terrible luck with them. I guess it’s something, but there must be better ways because we like everybody else want to be helpful and contribute as well but minus all the abuse or targeting which I experienced at work nearly every single week. Never saw anybody else being singled out and humiliated at work in front of other coworkers, but here’s ASD man so have at it is what it seemed like. They knew of my issues so I thought hmmmm seems odd and of course I was lied to and told it’s standard protocol blah blah blah. Almost makes me wonder if some get some sick joy out of this behavior. Thank you ASD mom for your contribution to ASD and being somebody who cares. I am saving this in my bookmarks as it’s wonderful to see and gives this ASD adult homosapien man hope. If nothing gets done then we’ll stay on the list of things like only being able to work in a factory, sorting items for incredibly low pay or worse. Sometimes I think that many forget about long term because some temporary fixes for us end up having long term severe problems such as PTSD, Panic Disorder or even physical health problems on top of it. Just speaking as one because I can’t speak for all, but those long term damages finally got me in my middle 30s to which I got the standard be strong aka I don’t truly want to hear this or care. Some at least will tell me this while others use the politically correct model instead then off they go. Still have vivid memories of behavior modification and it’s not fun having random nightmares or panic attacks out of nowhere. Embarrassing, but somehow I’ll get there and hope all those with ASD and even you Nerotypicals too:) I don’t exclude even with abuse from childhood councilor’s and even a so called medical professional who finally lost his license after a huge list of complaints. Took a death under his care to even change things which breaks me mentally because that little girl should still be with us but nobody listened to either my parents or me. Real change must be in the form of laws and structured alternative ways to provide opportunities that otherwise won’t exist. Billionaires like to hoard up the cash and power so we’re unfortunately stuck at this point as some lack empathy yet the myth is us with ASD do. Totally false and gross oversimplification. I bet so many with ASD would benefit from a change in the mode of production and even Nerotypicals will too, so this is a win win for many. Key is…. Do they want to invest in it or actually make logical adaptations as a means to open up long term returns, or keep it as is and continue to gobble up power in a small amount of hands until forced under a law I would like to call The Decency Act. This will have a ROI in the long term, save lives, improved mental health outlooks, lower drug problems, but is difficult when impatience, greed or short term is more important than what I propose. Corruption doesn’t help either. Good luck to all and thank you for being a caring ASD mother. :) I love hearing things like this to wake up some minds. Note I’m not insulting anybody, so hope no offense has been taken. Is not my intention. Just making a point and opinion as it’s due time. After all…. We’re not in the 1800s or 1900s and no way should we reverse course or be all left behind. Apologize for my sloppy or maybe weird way of writing, but it’s the best way I can communicate. Technically this is better than my preferred way which only a few have been able to understand so I tried right haha. I study humans as a means to hopefully not be a burden. Heard that enough before bleh 😂. On a side note Google ads gave me a ABA ad uggggh. We’re not rats or pigeons which is primarily where this therapy was modeled from. Bit more complicated, but you can see the proof if interested as the history about it is clear as filtered water. Unless of course it’s bias information from the ones who do it themselves or have a special interest involved. Needs to stop ASAP and a new model of acceptance is brilliant. If needed then basic supportive therapy is ok, but no more radical ideas or treatments that ARE abusive. Sorry to burst the bubble for ABA supporters but just because your child says it helps doesn’t mean it does. I lied and agreed to make it stop and they got credit for being helpful, but it destroyed me long term so I’m at a rebuilding stage unfortunately. Hope this never happens to another child or as they reach adulthood they too can end up like me. Please don’t for the sake of these kids and again I thank the writer for supporting ASD in a truly kind way. :) It made my day that people like you do exist or it’s a dark, sad and lonely world for many. I must share this. It’s that good! Woohoo! :)