Bullying and the dark side of the Neurodiversity Movement
This is a post I’ve been meaning to write for a while but didn’t. I couldn’t. Partially because I was scared of the backlash, partially because this topic makes me feel deep emotions that I don’t like dealing with — from feeling angry to sad and everything in between. Today I want to shed some light on the dangers of the neurodiversity movement.
Want to see more of the bullying by the neurodiversity movement? See this post of mine for another snippet —> https://theautismcafe.com/en/end-actuallyautistic-bullying/
What’s the Neurodiversity Movement?
What is this thing, you may ask? At first glance it seems like a good idea. Autistic individuals fighting to get autism recognized as something to not be ashamed of, fighting for autistics to not be seen as less-than and not bullied. Cool, right? Of course. I’m all for that. Charlie, me, and all autistic people, we are just as cool and worthy of being loved and respected as anyone else.
Here’s where it gets tricky: the majority of neurodiversity proponents that you can find under the hashtag #ActuallyAutistic are extremists. Not only are their views on autism harmful, but the vocal ones, in my experience, have been very vicious, and constantly attack autism-parents and autistic adults who disagree with them on social media. I’d go as far as to call it harassment in many instances. But here, I’ll try to go through each of their arguments separately.
Neurodiversity proponents believe that:
“Parents shouldn’t be allowed to speak about autism.”
They believe that only autistic people should be able to talk about autism because they’re the ones living with it. The idea is “nothing about us without us.” The issue is that they completely exclude many individuals on the autism spectrum, who are severely affected by autism and don’t have the luxury of being able to express themselves on social media to give their opinion.
Another issue is that they only want to include autistic people who think like them. Autistic adults, like me, who disagree with them are, of course, not allowed to speak about autism either. They tell every autistic who disagrees with them that they have “internalized ableism.” They go as far as calling parents who express any morsel of negativity about autism, “martyr moms,” and then shame them on social media. You can imagine how emotionally painful that is for parents whose lives are already on a roller coaster and who’re doing the best they can raising an autistic child.
“Severe autism doesn’t exist”
You read that right. They do not believe that severe autism exist. They deny it. They believe everyone is just as autistic as all other autistics. In reality, Charlie, like many others, can’t communicate, care for himself, or keep himself safe without extended support and constant supervision.
Yet these people have the ability to get online to insult autism parents. Many of them are proudly self-diagnosed. They believe self-diagnosis is valid because doctors have failed them by missing their autism, and not everyone has enough money to go through a full therapeutic assessment (fair point). I feel like self-diagnosed autistic adults shouldn’t speak for all autistics as they do by saying “we.” Their “we” certainly doesn’t include all autistic adults. It doesn’t include me. I’m not against self-diagnosis as long as people don’t use it as a weapon to be nasty to other autistics and parents of autistic children.
“Autism is not a disability, it’s a gift.”
They don’t see autism as a disability so they don’t see a need for medical research, therapy, or a cure. Totally their choice. If there were a cure, I’d take it for myself. I’m high-functioning, but autism affects me in ways that hinder my own happiness. ND activists call people in favor of a cure ableist, eugenists, and nazis. They fail to realize that for many autistics, autism is a severe impairment. There are many autistics with self-injurious behaviors, no way of communicating (whether verbal or non-verbal), and no self-care abilities. For these people, the chances of living an independent life are close to 0. The #ActuallyAutistic speak from a place of privilege, being able to speak about their views online and advocate for themselves. Some see autism as both a difference and a disability. I respect that.
“You can’t love your child if you don’t like autism.”
I really wish people understood that you can be sad about your child being severely disabled and still love them with every fiber of your being. Hélas, they don’t. I love Charlie so much, and everyone who knows me knows that is true. But if I could take his pain away, and give him a way to communicate, I’d do it in heartbeat.
“ABA therapy is torture.”
They believe that ABA is abusive and a form of torture. They believe it’s ableist because it’s trying to take the autism away from the child. Charlie isn’t in ABA therapy because we want him to be normal. We want him to be safe, independent, to learn to communicate, and to decrease his, and yes, our, frustration. We want to fade away the less functional and dangerous behaviors, like playing with the cats’ litter box, swallowing rocks, and running in the street, to give him a better shot at life. I’m not trying to “fix” Charlie’s autism.
One of of my followers was telling me about that one time she published a balanced yet pro ABA article on her page written by a young autistic man. He had ABA, felt he’d benefited from it, and liked his ABA team, many of whom remained close to him and his family. (That’s actually the case for us too. I still speak with many of Charlie’s therapists.) After a while, the autistic young man’s mom quietly asked her to take the post off her website as he was getting nasty abuse online, and as a vulnerable autistic man was not able to take it. He was getting upset.
This is how it works: they bully people into being too scared to post positive experiences online about ABA. And then it becomes a vicious cycle, such that only negative experiences are found when you search online for ABA info.
I wrote an extended balanced post about ABA therapy here.
There are more issues about which I disagree with them. For instance, they think the puzzle piece symbol is harmful, as well as functioning labels and the terminology “person with autism.” Basically, they’re mad at the world and bully everyone who disagrees with them. See for yourself.
Note: Most of these were in response to my post about grieving my lost dreams.
It’s time to speak up for those who can’t!
I know it sucks and you may be afraid of repercussions, but if you agree that autism is a disability, if you agree that severe autism exists, if you agree that ABA therapy is useful and not abusive, and that parents should be allowed to speak about autism, then speak up too. If we allow this to keep happening, we take the risk that autism will be misrepresented and misunderstood even more than it is now. Severe autism exists. I see it everyday.
Let’s overpower the extremists in this dangerous neurodiversity movement, those who harass parents of autistic children online. I know we are a silent majority but because of the bullying the #ActuallyAutistic community is putting us through, many of you have chosen to stay quiet. I get it. I do. It’s hard to get insulted online. It affects me too, but we’ve entered a vicious cycle. We need to speak up. I need you. Autistics who don’t have the luxury to speak or express themselves on social media need you. You’ve got this. We can do this together.
Tammy2019-05-06 at 7:11 PM
I am someone who is a high functioning autistic person but I work with children and have seen the spectrum of autism. How it effects people differently, how some children are non communicative and that severe autism exists. I have also worked with a little boy who was having aba therapy at home and how much progress he made. I think the important message is that everyone is different and what will work for some won’t always work for others and that’s okay. I know I can communicate and share my thoughts but I never do this to Play my autism against anyone else’s. In fact I share my experiences with autism to try and help everyone on the spectrum. Maybe something I can verbalise by being high functioning can help a parent understand something their non verbal child is doing. This is and will always be the only reason I share. Autism is a spectrum for a reason and it’s important to always remember and hold onto that information. This isn’t a post to prompt this in any way but if anyone would like further information I write a blog http://www.my-autism.blog as my way of helping to support others. Xx
Heather2019-05-07 at 2:56 AM
As a parent, I feel like my child is an extension of me, so to say I can never talk about something my child is struggling with, or to shed light on what it’s like to raise an autistic child is ridiculous. I feel like their view points are very outdated. Most research is not focused on cures, but on learning more about causes (which is completely separate from a cure) and how to better support those with autism. There are some ABA groups that focus on lessening visible signs of autism so they “blend in” better to be more “normal”, but far and wide, those are all considered outdated tactics.
Please, please keep sharing your stories. As the mother of an autistic child, I value your perspective as not only an autistic yourself, but the mother of an autistic too. You have so much knowledge to share and to be bullied into silence would be a disservice. I’m so proud of you for speaking up!!
Amanda2019-05-07 at 10:45 AM
Yes! This. All of this. Thank you for writing the words that I’ve been hesitant to. Sharing
Bobbi2019-05-07 at 11:56 AM
Yes! Yes! Yes! Don’t stop speaking up! My son is on the spectrum and would be considered higher functioning. With his therapies and all the wonderful therapists and doctors on his team I know he will have even more progress. Do I look at my son as broken and needing to be fix? No, absolutely not. Do I want to give him every avenue possible to be able to live with less frustration, communicate better, live safely and be able to become an independent adult one day? YES!
zhen ren2019-05-07 at 7:49 PM
While some of the things you state are worthy of thought, Neurodiversity is without doubt a necessary and valid concept for discussion. While a few of its proponents are perhaps too zealous and intolerant, gravitating to thoughtless extremism that is at times over-wrought, there is a vital and imperative need for the self-advocacy inherent to the neuro-diversity movement, and in the push-back against inaccurate memes and negative stigmatization of autists. Some parents ARE harming their children with the incessant search for cures, extending to giving their kids bleach and other baseless attempts to “help” their kids. I’ve seen the remarks all over the net, even showing up in unrelated political blogs. There is almost always some parent popping up describing their autistic kids with obvious mockery and disgust. Some of these parents clearly do not love their children. Their blatant disappointment in their kids is disturbing. Its shocking to say the least. I say to all, regardless of stance, that we should be open to the various sides of debate, should listen, and be compassionate to autists and parents alike, but having said this do not tolerate the degrading, demeaning, self-esteem killing characterization/treatment of autistics. Many good and valid ideas have come out of the neurodiversity movement. Some well-meaning persons may take things to extremes, but I think most are reasonable. And likewise, some of those arguing against neurodiversity and who are perhaps unwittingly supporting neuro-bigotry and toxic stereotypes, and forced, damaging suppression of autistic traits, as well as spirit-crushing stigmatization, are equally well-meaning but also are going to extremes. All of this shuts down open discussion and ends up in conformist group-think. I will continue thinking for myself, and will not bow to the assumed authority of any self-appointed experts.
Alyssa Huber - The Life of an Aspie2019-05-11 at 6:49 AM
Thank you for your comment. I think it’s always a good idea to try to understand different perspectives and to be as respectful of each other as possible. Though, I tend to leave conversations where the other person does not seem open to being reasonable or respectful of me in return–or if I myself am getting angry or feel like lashing out. For instance, if I politely offer insight in a Facebook thread and a parent (or anyone else, really) responds by screaming at me for being “wrong” or something… then it ceases to be productive and I see no point in continuing. Likewise, people will inevitably post/say things that set me off in anger or sadness, and during those times I need to retreat and recover before I can rationally decide if that specific comment/threat/topic is worth engaging with.
It’s hard to not fall into an extremist mindset when a topic is so incredibly personal and emotional to you. So I think anyone on either side needs to ensure that they have strong coping skills and an open mind. Things will get better. Until then, I’ll choose my battles carefully.
Adrienne Pia2019-07-24 at 2:02 PM
AA2019-05-09 at 5:02 AM
Keeping myself anonymous because reasons.
I’m an autistic that has shared their views on Twitter and stuff and recently I stopped using the #ActuallyAutistic hashtag because of the amount of sheer toxicity and also some gatekeeping that goes on. (The last straw was someone who created a blacklist of self-diagnosed autistics because he felt they were only “pretending to be autistic.” This community justifies threatening people because they feel that the neurotypical community would do the same to them. Autism activism and self-advocacy on Twitter has taken a stance that is very black and white. (Which ironically is pretty autistic) Meanwhile I’ve been making an effort to get away from that because I don’t want to take a “My way or the highway” stance because that will get us nowhere.
Recently out of confidence I found myself in contact with someone whom I found out was an ABA therapist. I was not subject to ABA myself but I had the same negative stance on it as most others because that was the only thing I knew. However through talking to him I found out more about what it details and in what kinds of situations these tactics labeled as abusive would be applied. It made it clear to me that I would have to do more research on the subject and find out more about those cases where clients claim to have gotten PTSD from it. (ex. Was it applied in the correct situation and how?) To me, I’m more worried that certain therapists may try to suppress things like safe stimming habits where the end result may make the patient appear more “normal” in public but could result in reduced coping ability in dealing with hypersensitive moments and what not. If I can answer those questions for myself and take things in a more gray area, as well as query contrasting opinions with respect and try to learn more, I feel I can do much more than just add to the stigma that #ActuallyAutistic just seems to be adding to the rest of us. It’s counter-productive.
Activism and advocacy is useless if you only see one side, and I broke away so that I could freely look at both sides and try to understand more about the things that autistic self-advocates traditionally hate and add some gray to my picture
Eileen2019-05-09 at 5:19 PM
Your comment put a smile on face so thank you for sharing.
Adrienne Pia2019-07-24 at 2:09 PM
Thank you. Thank you again.
paul2019-05-09 at 9:43 AM
It used to be said that Cocaine was god’s way of telling you you`ve made too much money.
In the same way you could claim the supporting the more extreme elements of Neurodiversity is just god’s way of telling you you`ve spent too much time in isolation on the Internet, on a device usually paid for by someone else, i.e. wealthy loving parents, welfare (taxpayer).
It’s the ultimate in self-indulgent rubbish, the inconvenient truth is the majority of autistic individuals are disabled with a lower life expectancy (sometimes as low as 36), 90% unemployment rate, with a life of poverty and loneliness. Nobody is saying they shouldn’t have rights in the same way as other disabled individuals like schizophrenia, but all this rubbish of autism is a difference is just un scientific nonsense, being dead is a difference, so is being in a coma & in a vegetative state!
In the real-world citizens work all week to put a roof over their heads. Government quite rightly supports measures to help those that cannot help themselves, such as the disabled, but as a healthy trade off also supports measures to reduce the future burden of these individuals through research and treatment programs.
Those that refuse future treatment if it becomes available would quite rightly receive no sympathy in the form of acceptance, welfare support.
The idea that cash strapped western governments and hardworking taxpayers are going to be happy to pay enormous sums of money to the 90% of autistic people who are unemployed / unemployable because they refuse treatment, is not going to happen. The idea that schools will accept children that may go crazy in the classroom bite teachers etc., because their parents refuse them treatment is not going to happen, if a cure or effective treatment becomes available. In fact refusing your child treatment will quite rightly be seen as a form of child abuse, given the pain and suffered by some of the lower functioning types.
I used the term Western governments for a reason, in Africa, Asia and nearly all the rest of the world, it wouldn’t even be debated, some of the ideas of neurodiversity would just be laughed out the door.
Megan2023-01-25 at 4:00 PM
Yeah, you can’t “treat” autism. There is no cure and there won’t be, as it is literally a difference in brain functioning. So saying that taxpayers shouldn’t have to support people who don’t get treatment is an odd and extremely ableist point of view. Your description of autistic people is abhorrent. And in case you didn’t know, public schools are absolutely required to provide special education services for all students. In many communities, this is often the only service available for autistic children. So before you blame autistic people for their own levels of illness and poverty, perhaps consider the system causes of those. Even ABA doesn’t claim it can cure or treat your autism. You can learn tools and coping strategies, but none of that is ever going to remove your autism. Please do some research before you comment about something.
J2019-05-12 at 1:14 AM
Why would you write an article whose majority content is literally just a collection of people you demonize making super valid points?
Zinnia2019-05-14 at 8:59 PM
Because she is trying to educate the community about how negative and harmful the Star-Bellied Sneetches of autism are for families who are dealing with real autism.
I’m shocked by this ignorant harrassemnt of families who are already struggling. Please, if you identify as neurodiverse, move forward with your lives, be happy, you have better things to do than harass people online or worse, hurt someone who needs support and assistance. Take yourselves off the Autism Spectrum and leave the Autism community alone.
Underdesk3yrsnowhighfunctioning2019-06-08 at 10:28 PM
The idea that you get to decide who is autistic is laughable and abusive. I was diagnosed at 7 and then again in my 40s. I spent a lot of time early in school literally under my desk, playing with other children only if they would let me be the dog. Right now most people would not know I was autistic. That doesn’t mean that I don’t remember what it was like when I was supposedly low functioning, that doesn’t mean that I can’t tell when parents are centering themselves instead of their children’s experience. The woman above who says that her child as an extension of herself? That woman needs therapy. She doesn’t need a affirmations about how that’s good. She needs therapy. That’s co-dependents that’s enmeshment that’s unhealthy.
A lot of things would be easier for parents they fought for actual rights and inclusion
Lena2019-05-25 at 2:11 AM
My daughter is severe autistic . I consider autism as disability and not just a difference. That is a certain brain damage (or problems with transmitting neurological signals in certain areas).
It is silly to state that removing autism from an individual is the same as removing an individual. It is even more silly to say that if mother hates autism that automatically means she hates her child.
We can state in the same way about individuals who have a cancer or a heart condition that if we remove cancer by the special methods or the heart disease by modern surgery we remove the individual…???
Every close relative of a person with cancer will say “We hate cancer!” but no-one would ever consider this as sign of hate towards their sick relative.
I am also sure that majority of autistic people if they could be given choice they would choose to be normal if they could exactly know what it is to be normal or typical and what huge advantages it gives and how much happiness and freedom it brings to be independent and responsible for own life, how great it is to be able to communicate and enjoy communication.
There will be only one thing which may stop them from choosing to be NORMAL . It is feeling of FEAR , this is a well known psychological phenomena of people who were in-slavered. Slaves in America were afraid of freedom once they got it because they did not know how to use it, how to search for jobs, how to arrange their lives. Autism is a slavery, because it makes people dependent on their carers.
I had read enough articles published in public magazines and research journals about bad abusive treatments of autistic people in residential care units, because they can not report, can not advocate for themselves. (also bad treatments and bully from their disabled neighbors). My biggest fear is my child has to live in a residential care unit one day.
Already enough that my daughter got psychologically traumatized in autism specialist school. She could not report to me to receive timely protection. I only realized that she started to hate me for sending her every day on the taxi, started to bite me, and later she got series of nearly epileptic seizures which disappeared after I have taken her from school. The school were only saying that this regression is her individual developmental path… but it was not.
It took us two years to nearly recover from damage and our ABA program came back to the same point where we stopped as she lost her many skills after the last seizure, which was turning-away-from-school point.
I observe how my child can suffer because of her inabilities and that she wants to play with other children but she can not. I think my unhappiness about life when I was child was nothing in comparison. It was about very small problems. To be honest I was not unhappy when I was a child, but autistic children are often much more unhappy and deeply frustrated and have many many tantrums. Is that the life they deserve?
I really have a big pity about my child and compensate for her disabilities in all possible ways both by helping to learn new skills with ABA and playing her favorite but very odd games like suggested by Son Rise approach (from point view of a normal child they would never be interested to join in, but I do). I do not have time and strength to play always her games with her because I have to work, cook, clean and have almost no sleep, but I do as much as I can, because I am the only her friend who understands her demands and interests. In school her play demands were also not supported, prohibited.
I observe how extremely happy and proud of herself she is becoming when she suddenly understands how to play games with typical children , for example, at StageCoach club: Musical Statues, opposites games, dancing and Simon Says. She learned them eventually because I drilled those games at home on 1-to-1 basis using ABA principles.
So taking autism out of person only means systematic stimulating brain in the areas where they have weak connections or neurological paths in order to improve those paths. It is not taking autism out really it is adding more functioning to brain, making brain more rich, increasing its strength (brain “muscles”).
It just was simply an incorrect phrase “taking autism out” said by someone about cure. But it caused so many useless discussions in the media or such bully behaviors towards those who want cure their children from autism. I can only appreciate the author of this website , Eileen, for her honest views. I do support her every statement, let them bully me too.
The brain damage of a person with learning disability including autism can be identified through testing primitive reflexes. My daughter has many retained primitive reflexes which are abnormal or atypical and non-integrated. There are three main research groups who provide treatment suggestions to add more benefits to educational approaches like ABA or Son Rise do.
Resources are the following: 1. https://www.inpp.org.uk/intervention-adults-children/more-information/reflexes/ ; 2. https://www.blombergrmt.com/; 3. https://masgutovamethod.com/
Primitive reflexes are repetitive movements of small babies. If they are weak or abnormal and do not integrate in a normal way due to brain damage during birth or in the womb they will alter all the cognitive and physical (both are greatly interrelated) development of the individual. This is what is happening in autism and in many other neurological conditions like cerebral palsy and so on. The difference between cerebral palsy and autism is only about which types of reflexes are affected and whether they are abnormal, atypical, or weak.
Very often repetitive behaviors and stimms of autism are misunderstood and only considered to be a coping stress strategy. My question is why autistic people have very specific stimm patterns? The reality is that stimms, those repetitive movements are primitive reflexes!!! popping up often in situations of stress (as described by Svetlana Masgutova). Those reflexes are pleasant for autistic individuals and are calming, because reflexes are wired in their deep brain layers underneath the cortex .
I know exactly what reflexes are popping up in my child when she gets stressed. Most often she has Palmar and Grasp reflex as she starts to twitch and vigorously move her fingers . Also very often there coming Asymmetric Tonic Neck reflex, when she stretches her arm and turn face and bend head towards arm moving from foot to foot to keep equilibrium. These are just examples. Some children may compensate for postural abnormalities and problems with Galant reflex, relaxing muscles in their lumbar spine by….walking on their toes!!! Also head banging is related to a certain reflex (I was reading but do not remember anymore which, because it is not what my daughter has)
This is incorrect to use ABA to get rid from stimms. It is more reasonable to use ABA to train children to do reflex integration exercises to integrate reflexes. This will cause stimms to go away naturally, there will be no longer demand of person to exercise those repetitive movements after reflexes integrate.
Integration of reflexes in small children goes away together with demand for sensory exploration and they start to play more pretend and complex games. In the same way autistic children will automatically loose demand for abnormal sensory play which can be quite annoying for people around (for example poo smearing, all what small typical children do until their reflexes get integrated by the age of 2-3) . A standard school approach and occupational therapy offers so-called sensory integration (not reflex integration!!!) and sensory circuits, which did not prove to be efficient autism therapy. Re-patterning and integrating primitive reflexes will be something which helps:
n2019-06-28 at 5:37 AM
how dare you compare autism to chattel slavery.
David Andrews M. Ed., C. P. S. E.2019-08-20 at 8:59 PM
I really hate saying this but – whilst I’m not ashamed of being autistic per se – the assumed association with that lot that comes with it DOES embarrass me.
The neurodiversity movement was initially a good thing: it was largely evidence-based and sought to redress an imbalance of power and influence. Very noble.
Not anymore. It lost its way ages ago and has never found it since.
Hafrún2019-09-02 at 3:09 AM
Im autistic and I dont share the views of the neurodiverse community and I have been bullied out. This movement is hurting us.
Eileen2019-09-02 at 10:46 PM
I’m so glad to see more and more autistic adults speaking up against the neurodiversity movement. The bullying has to stop.
Anon2023-01-13 at 9:10 PM
I agree with you and this entire article. I’m high functioning and would have been diagnosed Asperger’s if the diagnosis still existed (late diagnosed). I keep speaking out and refuse to be bullied by the neurodiversity community. I have been accused of being a Nazi and eugenicist just because I really would love to have the option to cure my autism. I respect those who do see it as their identity and that’s okay but they can be very vicious and nasty to anyone who does not share that view.
My autism is nowhere near as severe as seen in others but it ruins my happiness enough for me to wish to be without it. I am impaired in my ability to form connection with others, including other autistic people and I have sensory issues that limit me. The NDM say that I hate myself and it is “internalised ableism.” I hate the autism, not myself and everything I’ve achieved is despite my autism and not because of it.
I notice a lot of NDM extremists are able to connect with others pretty easily, even they are only other autistic people. I am fed up with the isolation that ASD brings and when I discuss this and try to reach out with other autistic people who feel the same, I get told that it is “self-pity.” Really? The NDM are constantly saying how difficult their lives are but as long as they worship autism as a sacred thing that you can’t blaspheme then apparently that is not the same. NDM is like a dangerous cult trying to silence the other opinions. They are all for inclusion but only if it is the RIGHT sort of autism and the correct view point, They are largely extremists plain and simple, though there are some nice individuals who can agree to disagree.
Painting autism as “just a difference” will eventually hurt everyone by losing support etc. Neurodiversity started out with good intentions such as better awareness and accessibility but has descended into a dangerous movement that is harming and will continue to harm other autistics. I tried to embrace the NDM movement but the more I learned about it and about all of the things that autism has stopped me from doing, the less I could support it. I now oppose it and I think that more autistic people who do really need to speak out.
Xanthe2019-09-06 at 8:20 AM
The viciousness within the autistic ‘community’ is off-putting. I have observed that bipolar disorder & schizophrenia are often included under neurodiversity. I have bipolar & yes my brain is ‘different’ & doctors consider me to have a disability but without medical help I would be dead by now.
Wallace Runnymede2019-12-13 at 10:45 PM
Thank you for writing this. I got a lot of bad faith smears and defamation from the militant autism lobby, including on Twitter, and I’m glad to see you standing up for people who don’t follow the fanatical ND cult.
John2020-01-13 at 2:56 AM
Thanks for writing this article. I really hate the ND rhetoric because until we have an Autism Nation to move to, we are forced to exist within a neurotypical world. I hate stuff like “It’s just a different operating system”. I couldve done without the bullying, constant misunderstandings, being told to go away, etc. It’s a disability pure and simple.
These idiots don’t seem to understand there’s something highly stressful about raising an autistic. That maybe, it really sucks to have to research nursing homes rather than college education, for example. That maybe it really sucks to be at work and have to answer a call from a frustrated teacher about their kid’s biting. I know this and I don’t even have kids.
Max stojni2020-04-30 at 2:55 PM
Hey i loved this, ive been going through the same problems with the community. My brother is low functioning autism, hes non verbal and sometimes violent due to his headaches. I tried making a post about all of it in the autism reddit, it got removed. Made a post in an autism discord, i was then called “hitler” towards autistic people. They told me i didnt care about my brother, that because i hate his condition where he cant talk or do anything for himself, that i hate all autism. Actually baffled me how intolerant they were. Of course i hate my brothers condition, its ripping him of the life he couldve had. He cant learn because of it, he cant tell someone when hes been hurt or bullied, he legally cant ever be left alone for the rest of his life. Why wouldnt i hate that? Id have to say im a little more on the angry side about all of it, the community for the most part didnt respond well but there was one person in the discord who actually listened and shared my writing with his friends. That made me so happy, to see not all are like this. Not all are so intolerant, im gratfeul one person listened to me, even if it was only 1 in a 100. I kind of forgot where i was going with all this, all i can say is thanks for writing this article. Thank you so much. There may be hope for a real conversation about this with the community some day, i really do hope.
Carrie2020-09-16 at 6:43 PM
I advocate for those with AD aka Classic Autism (now referred to as ASD level 3) get a separate classification and be removed from the spectrum. Prismatic Autism, I call these individuals Prisms. The term Autism has been so distorted and applied to people who often times don’t even have a formal diagnosis on the spectrum. Which means they don’t have autism. For the benefit of Prisms. So that funding for research and development of effective treatments and also working towards the goal of finding the causes and seeking a cure can be out of reach of the ND movement. The quality of life, the safety and the very lives of Prisms depend on freeing them from the damage being inflicted by Spectrum Atypicals.
Lina Blackrose2020-09-25 at 3:05 PM
Thank you for being brave enough to share this post. I was diagnosed with ASD relatively late, age 35, after finally dragging myself out of denial about my ‘problem.’
It was quite a revelation to deal with, and a lot of uncomfortable emotions from past treatment etc resurfaced. I was emotionally vulnerable and, looking for support, became a part of the neurodiversity movement, using the #actuallyautistic hashtag.
I started an Instagram account to share my perception based on my own life experience. At first all was well, it became a new ‘special interest’ to fixate for hours on, and having always enjoyed art and creative writing, felt that I was putting my skills to good use, helping others in the process.
The ND movement was easy to get swept up in, with sayings like ‘autism is just a difference’ and the ‘us against the world’ mentality which gave me an outlet for my anger at having been left undiagnosed and struggling for so long.
Things changed when I started to voice my own opinions. I questioned the narrative surrounding the BLM movement, voicing my distaste for the violence and racial division taking place. I’m not particularly politically minded, but with the majority of the hashtags users being extremely far left, this resulted in a 3 week long smear campaign from an #actuallyautistic account which then had 4,000 followers – ‘calling me out’ as racist, among other things. This resulted in a barrage of hate from the ‘community.’
I stubbornly recovered from this, blocked and moved on and continued to write, as it was now my main hobby and I refused to be silenced by one bully, but the thing that ended it was when I spoke up about the fact that autism was becoming a trend and an ‘identity’ on social media, particularly on TikTok. I went into detail about how I was angry at the fact that it was perpetuating more stigma and causing autism to be viewed more negatively whilst not being taken seriously. I described it exactly as it is – a rainbow-covered narcissist festival. (While not meaning to trivialise real NPD, in my defence I was angry. Admittedly I could have used better wording.)
I questioned why people were so triggered by some other users who were expressly against self-diagnosis. I asked why separating oneself as ‘autistic’ was such a big deal, when there was no need for accommodations of any sort. I myself have many friends with autistic traits, who are not autistic. We just naturally get along. I mentioned that I was confused as to why the label was seen as necessary to ‘belong.’
I stopped using the #actuallyautistic hashtag as I decided that it doesn’t represent me or my views on anything, at all.
Of course, this resulted in another smear campaign, a post on another #actuallyautistic account ‘calling me out’ for my ‘behaviour’ / different opinions – the comment section of the post was absolutely shocking. People I had never even spoken to before, full of such intense hate for me.
A lot of them went so far as to outright lie about me.
The account owner and his girlfriend were also constantly viewing my story on my art account using 6 different accounts of theirs, after I blocked them, and continued to take screenshots and share them.
I ended up getting rid of both accounts and deleting most of my social media, after deciding that my mental health was more important than my freedom of speech.
My advice to autistic people and parents / carers of theirs?
DO NOT USE THE #actuallyautistic HASHTAG. Ever. Steer clear of the neurodiversity movement. While it was originally founded on good intentions, the ‘community’ they have built up is extremely toxic and dangerous, not to mention full of bullies and attention seekers, a lot of whom aren’t even autistic.
It has become an absolute shambles. It makes me feel ashamed to be autistic.
#actuallyautistic does not speak for me, and it never will.
Keep speaking up for those of us who’ve had enough xxx
John Rawlings2021-05-12 at 8:05 AM
I want to get involved against the neurodiversity radicals and hope you can put me in touch with suitable organisations within the UK.
Eileen2021-05-21 at 11:12 PM
I’m USA-based, sorry!
Titiwat2022-04-16 at 9:39 AM
i wnat to aganinst the neurodiversity too but in thailand
Anon2023-01-13 at 9:12 PM
I’m in the UK and I’d love to go against them too if any organisation exists. I have looked but so far found nothing, which is a shame.
Lee2021-05-30 at 6:52 AM
While I understand some of the principles of neurodiversity, and the original premise of acceptance and promoting greater accommodations in the workplace and society at large, the extreme views are disturbing. To deny that severe autism exists is invalidating and ignoring a very large group of people on the spectrum. Attacking those who speak out and would welcome an end to symptoms that, for them, are a burden in their daily lives is disrespectful to them and their journey with autism. And to silence parents and caregivers who are the only voice that their significantly cognitively impaired children have, is silencing those children as well. Not to mention ignoring the experience of the caregivers. Of course their identity is built around their child’s autism. If you are the parent of a severely autistic child it is 24/7 existence, and truly encompasses almost the entirety of your reality. That there are many things, sometimes very basic human needs they must set aside for their children isn’t whining, it’s a simple truth. There are autistic individuals who cannot care for themselves in any capacity. These individuals vastly love their children to give so much of themselves, sometimes for very little reward especially when every resource and gain is hard won. I can’t condemn them for wanting more for children and themselves. Are any one of this group of individuals lives and experiences invalid? Is their journey not real? Another thing I found interesting in the comments was the common thread of stating that the more severe symptoms, cognative impairments and developmental delays were not considered to be a part of autism, but a different diagnosis altogether. There was also allot of hate voiced at caregivers sharing the reality of negative behaviors and symptoms through writing or videos. While I understand maybe sharing under an anonymous name or blurring the faces in a video, in the event, which is unlikely for some, the child reaches a point cognitively to search out the content. I don’t understand why seeing or reading the truth of these individuals lives creates such negative reactions. How is there supposed to be tolerance for this group of people if they’re forced to stay hidden in the shadows? Where are the supports, services and respite going to come from if their needs aren’t seen and addressed? This isn’t an insignificant number of people. Those affected by the more severe symptoms associated with autism is around 30%. Not to mention their families as well as those who are higher functioning, but still impacted in their daily lives and don’t embrace the challenges their diagnosis presents. For many people a societal change won’t make a difference. No amount of awareness or accessibility will alter self injurious behavior, cure the crippling pain of Gastrointestinal distress, make it acceptable to disrobe in the grocery store, or okay to lash out and hit someone’s child or destroy property. It won’t fix the lack of resources, financial instability and broken relationships families living the reality of the severe side of autism face. Especially if medical research and behavioral therapy is shunned. States and law makers, who already balking over the costs of resources, are much less likely to make any efforts to enhance supports for these individuals if autism is no longer viewed as a disorder and if those most needing these services aren’t part of the picture represented to the public. I really believe that there needs to be 2 or even 3 distinct diagnoses, a not just level distinctions. There’s a rift that doesn’t seem like it can be breached and the spectrum is just too varied to support everyone’s needs especially with such extreme view points that aim to deny the existence of one end, the end that can’t speak for themselves. As well as silence any dissenters. As much as I would love to see compromise to achieve the goals and fill the needs of everyone, I don’t see it happening when the voices of those with the most immovable view points tend to ring out the loudest. Also when the public at large would rather pretend the disturbing reality of severe symptoms doesn’t exist. I also understand why higher functioning individuals who don’t present with these symptoms don’t want to be associated with them. Their autism is simply a unique part of who they are, and they don’t want autism to be viewed as crippling burden because it isn’t for them and many others. However, for large number of those who present with the extreme and debilitating symptoms a of autism and their families it is. It’s not truly the autism or unique view of the world that represents that’s the problem. It’s the extreme symptoms, those that impact the individuals ability to embrace and enjoy life, that lead them to elope, to cause harm to themselves and others, to experience debilitating levels of pain and anxiety, that lead to a lifetime need for constant care, that resources, intervention and research is desperately needed for. The only real way to achieve the ends of both groups without harming or interfering with those needs is to separate the diagnosis. Maybe this isn’t a realistic idea, but I think anything less will just breed a more thorough devide and hatred eventually leading to one group controlling the platform and the other being silenced and losing desperately needed resources and representation.
Tony2021-10-30 at 9:05 PM
I’m going to be strictly honest and I give zero craps about possible backlash as I don’t have any social media’s for these bullys and vultures to harass and abuse me on.
I frankly don’t believe a good number of these #actuallyautistic militant monsters are on the spectrum. To be so defensive, to lash out so violently at anything that doesn’t show them in the most holy and sanctified of lights. To self diagnose because their issues frankly weren’t severe enough to limit them to the point where the state didn’t fork over the money to have them diagnosed of whatever was keeping them from participating in society to the best of their abilities. To always need to be right and wish violence and pain on anyone who contradicts them.
It would make more sense that these people use ND as a shield. A catch all to blame all of their personal failings on to. It’s not their fault, it’s everyone elses for treating them like less instead of more! Does this behavior sound like anything in the dsm-5 for autism?
I’d say no. It does fit a few others though. Narcissistic personally disorder. And borderline personality disorder. Yes the big two. The worst two really, even more demonized and frankly far more common than the ASD that has been a constant barrier I’ve worked to overcome my entire life. It also frankly fits neurotypicals that have internalized rage at being marginalized for too long. If there was a treatment for autism. Something that would make my flat affect and atypical body language go from something I’m constantly working against to Something my body does intuitively, I’d sell you my soul today just for a single dose, and I don’t care which ND #actuallyautistic keyboard warrior knows it.
If you are interested in any articles that don’t bend down and kiss the Golden ring of the neurodiverse crowd. I’d be happy to try my hand at writing them. It’s not like I have much else to do.
M2022-07-16 at 7:12 PM
I was also very caught up in the neurodiversity movement and witnessed what it was doing (the harassment, bullying, scape goating)—is plainly sickening. Like so many others, I’ve left the community because of bullying. We autistics need to stop this—it is autistic people being targeted half the time! And the so called advocates: they have brought their attacks to a professional level: don’t underestimate what they’re capable of. Some of the people perpetuating and encouraging the bullying are the leaders of major charities. Others lead groups with huge followings. They plan attacks online and at times even bring it into the world—stalking autistic using other autistic people. Many autistic people: we are gullible and it’s easy to get caught up in this. If you want to see how far over it’s gone, just look up AIM (Autistic Inclusive Meets) in the unite states and it’s main patron, Dave Courtney—a convicted mobster in the uk. No kidding. I cannot believe what’s happening in what is being called the autistic community. Most of them aren’t autistic anyway—they’re just the same bullies I met in high school. If you look at me you see I am not as good looking or well put together as the people leading those advocacy pages are. But most importantly there is no way anyone should be taking the neurodiversity movement seriously if at its core is violence and this disgusting bullying. It has some valuable ideas, but at this point it’s been hijacked by jerks pretending to be autistic to get followers.
jcjessica2022-09-29 at 9:06 AM
I’m a 19-year-old high-functioning autistic girl from China and thank you sooo much for speaking out exactly what I feel about the mainstream autistic advocacy(whatever “mianstream” means nowadays…)!
Very unpopular personal opinion or not, I think I’m going to go as far as to say, that I actually prefer the puzzle piece symbol over the infinity symbol. The infinity symbol just screams toxic positivity to me.
Tern2022-10-26 at 3:38 AM
Here is a dilemma. I agree with them on ABA, on case evidence of authoritarian practice and kids desperately running out into the street from it, that came from the Neuroclastic site when it was also speaking out against the language bullying and the militancy. But I agree with you in everything else, and your exposure of all this controlling abuse is vital invaluable and gold.
I run a group with a model strong ethic against arbitrary rejection and purging. The “Autistic Collaboration” site had a seemingly friendly video all with me then never included my group in its list, and has only now, months later, given a reason. That it’s part of this Neurodiversity movement and only wants to list groups that “align” with it, and would want to censor from my group’s website every critical word about the movement’s behaviour. It is happily listing a later-formed rival group to mine in the same city, that is militant for all this dogma and is run by intolerant arbitrary leaders who reject at whim upon any difference of view with them.
The fight to resist these dangerous fanatics’ oppressive evil vitally needs sources showing evidence exactly like this page, but usable without then being able to pounce on that the same source agrees with ABA ! That much reduces how effectively I could use here as a source in arguments.
Mary2023-01-20 at 6:37 PM
Hello autism cafe!
First of all I would like to say sorry for the horrific way the Neurodoverdity movement has treated you. Unfortunately, it is becoming a common story
Crucially, I would also like to explain that there are millions and millions of neurodivergents who are not autistic. This seems completely lost on the Neurodiversity movement. I cannot express how much this movement does not represent me or my neurodivergent family members, or helps us in any way.
I am not sure why a group of autists with the least amount of social anxiety decided to form a brigade to speak for all of us. They give the impression to the public that ableism can be solved by pretending we don’t face any challenges besides their negative stereotypes of us.
We need actual diversity of opinions in neurodiversity so society can respond to the different challenges that neurodivergents face.