Autisme

Autism and the dangers of the neurodiversity movement

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I really wish people understood that you can be sad about your child being severely disabled and still love him with every fiber of your being

This post blew up. People having different views than mine about autism is not the issue. Bullying by people in the neurodiversity movement is however a serious issue and needs to stop.

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.

Comment from ND activist to autism parent on Twitter

Comment from ND activist on Twitter in response to this post of mine https://theautismcafe.com/autism-parents-its-okay-to-grieve/

Comment from ND activist on Twitter in response to this post of mine https://theautismcafe.com/autism-parents-its-okay-to-grieve/

Comment from ND activist on Twitter in response to this post of mine https://theautismcafe.com/autism-parents-its-okay-to-grieve/

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 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 from communicating, like Charlie, who are severely affected by autism and don’t have the luxury of being able to express themselves and 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 to work through.” 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.

aba cult abatherapy neurodiversity movement autism autistic actuallyautistic eileen lamb the autism cafe theautismcafe nonverbal aba cult abatherapy neurodiversity movement autism autistic actuallyautistic eileen lamb the autism cafe theautismcafe nonverbal

Comment from ND activist on Twitter in response to this post of mine https://theautismcafe.com/autism-parents-its-okay-to-grieve/

Comment from ND activist on Twitter in response to this post of mine https://theautismcafe.com/autism-parents-its-okay-to-grieve/

« 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. Most of them have the ability to communicate, use the bathroom alone, eat cleanly, follow directions, and many of them have jobs too. Many of them are also 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 like they do by saying “we.” Their “we” certainly doesn’t include all autistic adults. It doesn’t include me.




« 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 of being able to speak about their views online. Some see autism as both a difference and a disability. 

« 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 him with every fiber of your being. Hélas, they don’t. I love Charlie so much, and everyone who knows me know that is true. But if I could take his pain away, and give him a way to communicate, I’d do it in heartbeat. I hate autism often. My autism. And Charlie’s autism. It’s fine if you like your autism but don’t attack people who don’t.

aba cult abatherapy neurodiversity movement autism autistic actuallyautistic eileen lamb the autism cafe theautismcafe nonverbal

« 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.

aba cult abatherapy neurodiversity movement autism autistic actuallyautistic eileen lamb the autism cafe theautismcafe nonverbal

Some go as far as calling it a cult…


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: 90% of these were in response to my post about grieving my lost dreams.

 

 

  

Please share. 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. While people who know about autism understands that #ActuallyAutistic views comprise a minority, the rest of the population doesn’t because the #ActuallyAutisitc’s voices are so loud. 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, guys. 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. 

My book, All Across the Spectrum, is available for pre-order here.

Here are a few pieces written by autistic adults, on the subject of the dangers of neurodiversity:

The dangers of ‘neurodiversity’: why do people want to stop a cure for autism being found?
by Jonathan Mitchell

The Problem with the Neurodiversity Movement
by Thomas Clements

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11 Comments

  • Reply
    Tammy
    2019-05-06 at 7:11

    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

  • Reply
    Heather
    2019-05-07 at 2:56

    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!!

  • Reply
    Amanda
    2019-05-07 at 10:45

    Yes! This. All of this. Thank you for writing the words that I’ve been hesitant to. Sharing

  • Reply
    Bobbi
    2019-05-07 at 11:56

    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!

  • Reply
    zhen ren
    2019-05-07 at 7:49

    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.

    • Reply
      Alyssa Huber - The Life of an Aspie
      2019-05-11 at 6:49

      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.

  • Reply
    AA
    2019-05-09 at 5:02

    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

    • Reply
      Eileen
      2019-05-09 at 5:19

      Your comment put a smile on face so thank you for sharing.

  • Reply
    paul
    2019-05-09 at 9:43

    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.

  • Reply
    J
    2019-05-12 at 1:14

    Why would you write an article whose majority content is literally just a collection of people you demonize making super valid points?

  • Reply
    Zinnia
    2019-05-14 at 8:59

    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.

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