Autism

Autism and the limits of the neurodiversity movement

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

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. 

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

Can we take autism acceptance too far:
by: Miriam Gwynne

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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20 Comments

  • Reply
    Tammy
    2019-05-06 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

  • Reply
    Heather
    2019-05-07 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!!

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

    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 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!

  • Reply
    zhen ren
    2019-05-07 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.

    • Reply
      Alyssa Huber - The Life of an Aspie
      2019-05-11 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.

    • Reply
      Adrienne Pia
      2019-07-24 at 2:02 PM

      Thank you.

  • Reply
    AA
    2019-05-09 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

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

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

      • Reply
        Adrienne Pia
        2019-07-24 at 2:09 PM

        Thank you. Thank you again.

  • Reply
    paul
    2019-05-09 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.

  • Reply
    J
    2019-05-12 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?

  • Reply
    Zinnia
    2019-05-14 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.

    • Reply
      Underdesk3yrsnowhighfunctioning
      2019-06-08 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

  • Reply
    Lena
    2019-05-25 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:
    or this

    • Reply
      n
      2019-06-28 at 5:37 AM

      how dare you compare autism to chattel slavery.

  • Reply
    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.

  • Reply
    Hafrún
    2019-09-02 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.

    • Reply
      Eileen
      2019-09-02 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.

  • Reply
    Xanthe
    2019-09-06 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.

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