I met Katy Perry once and it changed my life. I also have a lot of thoughts.
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I hate the phrase “autism doesn’t have a look”
Autism doesn’t have a physical look or a facial feature, but autism HAS A LOOK. Autistic people stim, autistic people have abnormal posture, body movements, difficulty placing their bodies in a social environment, autistic people have speech impairments or differences in tone and rhythm, autistic people don’t make eye contact, we might tiptoe, have hyperactivity, verbally stim…
I get it that a lot of people are frustrated when they hear “you don’t look autistic”. But you don’t have to erase my existence to educate others. You can educate others about the different ways autism presents as well as understand and explain that people like me DO EXIST.
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oi, estou esperando pelo seu post sobre unmasking autism
olá, acabei de postar
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The romantization and trivialization of Autism Spectrum Disorder in the book "Unmasking Autism"
It's taken me a while to post this, even though I had the whole text written already. The problem is that every time I pick up this book or write anything about it I have a really hard time dealing with my emotions. This book is so bad and harmful that every time I have to think or read it – even if I'm doing so to criticize it – I have a hard time.
Anyways, I came across this table of "common, healthy autistic behaviors" (I didn't get that far in my reading yet) and I decided to make this post based on what I had already posted on Twitter.
The first thing that I need people to understand is that however you feel about your autism, however you identify, autism is, inherently, a severe developmental disorder that causes severe disability. You CANNOT have autism if you do not have deficits and impairments and I DO NOT CARE how you feel. Autism is classified so because people who have it need help, need A LOT OF help, REGARDLESS of whether we live in an accepting society or not and autism does not exist without impairment/deficit because if it did it would not be autism, it would simply be a personality trait.
The second thing that I need to say is that the traits listed on this table absolutely do exist in ASD but they are being put in an extremely romanticizing way and if one experiences ASD purely as described on this chart, then they likely do not have ASD. This is the exact problem with Tiktok, Twitter and other social media current content about autism, it's shallow, lacks context and is romanticizing. This kind of content is why so many people end up self-diagnosing with autism without actually having it, it's why people like myself – who have more difficulties – have a harder time fitting in, because current autism advocacy, such as this book and other social platforms, are advertising a type of autism that is cute and fun and easy to deal with, while autism is an extremely difficult condition to live with not only for the autistic person but for their family and friends as well. By advertising this cute, quirky autism, you are once again, like the autism community has always done since "Aspies for Freedom", leaving out those of us who are most marginalized. And I dare to say that this does not only happen to high support needs, but low needs people too who don't fit the new ASD criteria you have created.
Now, about the chart, the first sentence says: "intense studying of a new favorite topic". Not only is this type of wording extremely vague and could apply to literally anyone, but it's also undermining the intensity and the reality of having a special interest. Having a special interest is time consuming to the point of losing sleep, not using the bathroom, not showering, eating or interacting with others. A special interest itself causes so much self-stimulation that many people end up having meltdowns from overstimulation, a support worker once contacted me for help because their patient was so excited about Doctor Who that they'd talk about it to the point where they'd hyperventilate and trigger a panic attack and even lightheadedness due to lack of oxygen. Well, for myself I have experienced similar symptoms, like when I almost failed high school because all I could think about was this one TV Show I liked? Or when I almost passed out from crying and excitement from seeing Katy Perry at a concert when I was 15? Or when I was taken out of class on my first day of University because I was so excited about the topic we were studying I started making noises and disrupting the class? Or when I triggered a meltdown because I spent the whole day studying this same topic to the point where I overwhelmed myself?
"Not noticing sounds or social signals when focusing on an engrossing task": oh, do you mean when my dad and uncle accidentally mixed two chemicals to clean our pool causing a mild explosion in our backyard and a toxic fog that came into our house and I didn't hear my mom calling for me because I was too focused on a book I was reading? Or do you mean when I was a kid when I would be so focused on lining up my toys or watching the fan that I could literally spend hours and hours without having any other type of interaction which could lead to neurological damage because I wasn't using language and interacting with anyone? Or do you mean when autistic kids are usually so interested in objects that they barely recognize and acknowledge other people, leading to difficulties with development of language, cognitive and motor skills? A lot of autistic kids need to go to speech therapy, ABA or early interventions because we could very easily spend our whole days focused on a task or a toy to the point where we won't interact with anyone, which could lead to serious neurological issues such as completely lack of functional language. Social interaction is key to development of language and other important skills that will improve an autistic person's life, including those who are nonverbal and have very high support needs, and the fact that many autistic people won't acknowledge sounds or people interacting with them when they're focused is dangerous for their physical and mental health. See here the problem of intensity? How this book is shallow and lacks true understanding of ASD? Everybody happens to ignore one or two things if they're focused, doing it constantly to the point where it's dangerous and almost impossible for anyone to interact with the person is ASD.
"Needing to know exactly what to expect before entering an unfamiliar situation": yes, absolutely, every time I have to go to a new doctor my family has to call them beforehand, make sure they can see someone like me, ask them whatever procedures or exams they plan on doing and STILL I have to take extremely strong medication to allow doctors to touch me and for me not to have a meltdown because it's a new situation. Do you know what else? Needing a support worker with me on my very first day at University because the thought of going to this unfamiliar situation was so overwhelming I needed support, and still do every once in a while. Of course this is an extremely healthy behavior and doesn't cause any distress at all. Of course that I will always have people to tell me exactly what's going to happen to lessen my anxiety a little bit but still have a meltdown in the end (irony).
"Sticking to a very rigid schedule and rejecting deviations to that schedule": this wouldn't be a problem in a neurotypical person who can easily adapt to changes and eventual issues that come up in our daily lives. Unfortunately, I hate to say that most autistic people like myself deal with inevitable changes by banging their head against the wall causing themselves a concussion. Good changes? Bad changes? Ugh, it doesn't really matter. "I was finally hired to this job I have been rooting for in a long time", too bad dude, all your schedule will change and the only way you can cope with that is by having multiple meltdowns and eventually needing to be put to bed under the affect of Xanax. "Amanda, your cousin stopped by to make a quick visit", ugh, sorry, I wasn't expecting that pleasant surprise, I unfortunately must have an anger attack and self harm to cope with my feelings. "Amanda, your grandmother died and now your mom is staying home for a week on a grief work-leave", hum, not really on my schedule, will have to spend the next days trying to not sound like a dick to my mom because she disrupted my routine and I am having many conflicting feelings while she is dealing with the death of her mother. "Amanda, you have to come home right now because your grandfather just died and we have to travel for his funeral", ugh absolutely normal and healthy behavior to have a full blown meltdown in the Uni hallway because I wasn't planning my granddad's death and needing to be helped by a Professor who then called 911 because she didn't know what to do with me.
"Spending hours or days alone sleeping and recharging after a socially demanding event or stressful project": clear example of trivializing ASD. For most autistic people, even for people who have low support needs, socially demanding events cause episodes of mutism, inability to do any task at all, inability to shower, eat, take care of themselves, work. Autistic people aren't just chilling on their couch watching TV after a social interaction. Autistic people are laying in bed, feeling sick, having symptoms such as fever and panic attacks, feeling overwhelmed. I would argue this applies mostly to low needs people because for people like myself and other higher support needs people I know and live with, social events are not even a possibility in the first place.
"Needing 'all the information' before coming to a decision": this one absolutely pisses me off. When I need to make a decision I do need all the information, but not only the information available, I really need ALL the information that I WANT, regardless of whether it makes sense or not, such as wanting to know what will happen if X is chosen, but how will you know for sure something about the future? And no, I cannot let it go, autism causes something called cognitive rigidity, which makes every thought and feeling get stuck in an eternal loop which we are mostly unable to stop. On my second year of University I had to make a decision to follow a degree in Hebrew or Linguistics. I needed all the information. But the information that I needed was "how will I do on the linguistics tests if I choose this degree?" and "how will I be able to complete all the Literature courses on the Hebrew degree if I have a hard time with reading and comprehension?". This was one of the hardest times in my life when I got stuck in thoughts to which there were no answers for and this caused me extreme anxiety and distress.
"Not knowing how they feel or needing a few days to figure out how they feel about something": this is the number one reason to why I will bang my head against the wall. Not knowing how I feel, not understanding how I feel is an extremely distressing experience if not to say dangerous. Many autistic people don't notice serious illness and symptoms because they just don't understand that whatever they are feeling is normal. Luckily, I have had fewer experiences with that, but I know people whose appendix were bursting and they thought it was just a stomach ache. Last week I got up feeling weird. I didn't understand what it was, I thought it was anxiety. I went to my therapy appointment and came out still feeling a little bit off. I get home and vomit for 10 minutes straight in the bathroom and proceeded to have one of the worst food poisoning I've ever had. I had to be taught what feeling happy was, I had to be taught what feeling sad was. I have to be taught how to comprehend simple human emotions and how to understand them in my body because I simply cannot understand them. I am 22 years old. This is not healthy, this is not normal. This causes extreme distress, this is dangerous. And at least I can communicate to some extent how I'm feeling but there are family friends whose kids' are completely nonverbal with very little functional language. Whenever something changes in their mood, they have to be taken to the hospital to make sure it's nothing physical because they cannot communicate or comprehend their emotions.
"Needing a rule or instruction to 'make sense' before they can follow it": again, cute and quirky if you're an adult and the only situation you can think about this is things like "ugh, why would I treat my boss any different just because of a made up hierarchy?", not so fun when it's an adult person who cannot understand danger and thinks that riding the car with the seatbelt doesn't make sense. Not so fun when it's a 30 year-old man who doesn't understand what the police is and might act improperly around them, risking his life. Not so fun when it's a 12 year-old kid who doesn't understand death and thinks that playing "killing his sister" (by choking her) is fun. These are all real people I've met in my life.
"Not putting energy toward expectations that seem unfair or arbitrary": again, quirky if you're an autistic woman who doesn't see a point in make up, not so quirky when these things are like me, who sees exercising as totally pointless and I could very much spend the rest of my days not doing absolutely anything to move my body. Not so quirky when the expectations are actually adult people who don't understand the need to shower or personal hygiene.
I think I have made it a bit clearer with my examples how incredibly romanticizing this book is. It's a shame that so many people see this as some kind of autism bible when it's a book made by someone who we don't even know if is truly diagnosed with autism, with an extremely shallow understanding of ASD and complete disregard to the impairing nature of ASD. As I said before, ASD is inherently a condition that causes deficits and impairments and people who – most of the time aren't even diagnosed – don't get to redefine and trivialize the reality of living with autism, specially with someone with higher support needs. We can talk about different experiences of autism, we can talk about differences between high and low support needs, but we need to do it carefully in order to not trivialize what ASD really is – which is exactly the opposite of what this book does.
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The closest I've come to my heart exploding or the day I met Katy Perry
I met Katy Perry on the 1st of November 2023, but my story with her starts much earlier.
I was about 11 years old when my mom taught me how to use the computer to listen to the songs I liked. Our home wifi was so bad at the time that I had to wait forever for the videos to load on youtube and it made me extremely frustrated whenever I wanted to listen to Part of Me on repeat. So I was given a Teenage Dream CD (without the cover as my parents deemed it inappropriate for my age) and I could listen to it in my mom's office.
I'm a late bloomer, I have always been a little behind my peers: while the girls in my class were going to Justin Bieber's concert, it took me a long time to understand who Katy Perry was, what being a pop star meant and that she was the one singing the songs I liked. And when I did, I begged my parents to take me to see her – and they did, but it went all wrong.
I was 14 years old when Prismatic World Tour came to my city. I went with my mom, my dad and my cousin. But we all had to drive home early. Despite my efforts, despite sensory integration therapy, it was too much for me to handle. The lights, the sounds and the most important thing of it all: seeing Katy Perry live for the first time. Oh, I was finally seeing her, in real life! How could I manage the feeling of seeing her sing my favorite songs right in front of me? The songs that helped me, the songs that gave me hope and that helped me deal with the loneliness and bullying that came with my autism diagnosis?
I bawled to a point where I could not breathe anymore and we had to drive home. Then I laid in bed for a week feeling like a failure, feeling like a freak, feeling like I was everything I was called: weird, retarded, slow and so many other things. I was devastated.
But I never let myself give up. Katy made me feel everything: she taught me how to love someone I didn't know, she taught me hope for a future where I'd be able to do the tasks I had difficulty with, hope for a future where my dreams would come true, where I'd be able to go to college, go to a concert. She taught me how to express my feelings through music, she helped me understand myself through her music.
So, three years later, in 2018, there was I again, for Witness The Tour. And I cried again. And I cried, and cried a bit more. Because for the first time I felt like I had accomplished something I worked really hard for. And I listened to every word she spoke and it touched my heart. And during the hardest time of my life, when I was being bullied, when I was struggling with inclusion at school, when I was struggling to accept myself and all I wanted was to be normal, I heard the words she sang, I heard "acceptance is the key to be truly free". And it touched my heart and gave me hope for a better future where things would improve, where I'd find love and acceptance.
And that future came, it came on the 1st of November 2023, when I hugged Katy. I had never felt so much love and acceptance before. So many times, when people meet me and realize I'm different, they treat me differently, they look at me differently. When I move my arms around, when I struggle to make eye contact, when my body isn't sure of the space around it, people walk away. When the words fail to come out of my mouth, people look away. But Katy didn't. She looked at me right in the eyes. In that moment I felt loved like I had never felt before, I felt like I was finally whole, like the love I was searching for was finally found. I was complete.
I remember her security guard looking at me before my turn, I remember him telling me to step forward and I remember looking at her right in the eyes and she turns to me and we look at each other for the first time. Dear G-d, in that moment, I knew everything was worth it. The 20-hour trip from Brazil to Las Vegas, the fear I was feeling when my mom had to leave me alone so I could go into the M&G area. Everything I had gone through, every single moment I thought that I wasn't supposed to be here but still got through the night, everything was worth it for that moment.
Katy saved me. She taught me hope and love, she taught me that I am worth it and that I am supposed to be here, like everyone else, that acceptance is the key to be truly free. She helps me accept and love myself everyday. Thank you G-d, for giving me this amazing opportunity of meeting someone who means so much to me. And thank you Katy, for being a light in the darkest moments of my life and for teaching me that I am a firework. I love you so much.
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I suffer with autism: a response to Chloe Hayden's post on instagram.
I started writing this as a response to someone's question on Twitter, but as I kept getting involved into all the reasons why autism causes daily suffering for me, I decided to turn this into a longer post. The language might sound harsh if you're not used to it. I don't hate myself, I don't even hate my autism because I know I was born this way and there is absolutely nothing that can change that. However, when faced with affirmations that all my struggles are caused by society by others, then I have to come forward and say this type of stuff because I know I am not the only one that feels this way, and I know most people who feel this way are afraid to say this or can't even put into words like I can. So, here we go.
My biggest struggle in life in loneliness. I suffer with being lonely everyday, all day. And this happens because of my autism. I feel that my autism keeps me from establishing true connections and relationships to others. A Portuguese nonverbal autistic man once wrote: "autism takes from us what is most valuable and unique in a human life: the ability to connect to others". This is exactly how I feel. I find it extremely hard, boring and tiring to talk about things that aren't of my interest. As you can imagine this makes interacting with anyone an extremely difficult task because friendship is made of two sides, not only one. My speech and language difficulties also make it hard for me to speak, I can only speak for a certain amount of time before I get too tired of decoding my thoughts into phrases. It feels like a manual job for me: while everyone else is able to speak freely as their thoughts come in mind, I have to do the work manually. Does AAC help? Yeah, it does, but not entirely, because I still have language difficulties, which means that using language in anyway is difficult, not only speaking is a challenge, but communicating.
My cognitive rigidity also makes it very hard to make friends. I find it difficult to interact with people who have different set of beliefs than mine and I don't mean difficult like everyone finds it difficult. I mean difficult in a way that my best friend from school converted to christianity 3 years ago and I still have written long lists of pros and cons of being her friend, I have tons of writings on my notebook about what I should do, how I should act, researching morality to understand if I can keep a friend like her: has she adopted any radical beliefs since she converted? Would I invite her to my (lesbian) wedding if I ever get married? Does she believe in hell and heaven? Is she pro-choice? She is still nice to me, but I don't agree to certain beliefs, what should I do? All of these questions "live" in my head almost daily and it's been 3 whole years.
My rigidity also makes it almost impossible to go to new places, which is something all young adults my age like to do. Not only I find it difficult to visit new places, these places have to be quiet, they have to be somewhere where I can easily get home or a place where my parents can pick me up (because I have a hard time going places on my own), they have to have something I eat, or I have to bring my own food. With all of those needs, you can imagine that most young adults don't want to take care of someone like me when going out, but rather they want a friend and the sad truth is, I can't be a friend. Because my needs are almost always too much to deal with. And I don't blame others, I don't expect a friend to be a carer. This is the reality I've come to accept and why I work so hard in therapy to improve my issues with autism.
Sensory sensitivity and motor skills difficulties make my daily life a living hell. I can't stand the sun, the wind blowing on my face, dogs barking, cars, motorbikes, babies, kids, sometimes I have to leave my own piano lessons early because the piano is too loud or sometimes too shrill. Everything I do like getting food at the Cafeteria at University needs to be done with extremely careful movements. I easily let stuff fall down, break stuff, when eating I make a whole mess because I have difficulty holding the fork and knife and everything related. I constantly hurt myself badly. I have bad posture and bad ankles because of tiptoeing, which cause me excruciating pain.
I have trouble understanding simple concepts, simple social skills. I have trouble reading books and articles because of my language. I have trouble following whatever the Professor's talking about in class if they don't follow a straight line of thought, any distraction, any deviation from the original topic confuses me. I can't organize things in my head anymore. I need three times the time to get through a paragraph a normal person needs because language is so hard for me to comprehend. Yes, it's not all bad, I am myself a language genius (not really a genius, but let's just pretend). Yes, I can memorize grammar structures extremely easily. But I can't comprehend a sentence with any hidden meaning. I can't interpret a text that uses different meanings of words and different figures of speech. And when I get frustrated because of these difficulties that are cause by my autism, my first instinct is to bang my head against the wall. Scream. Hit myself. That's how my meltdowns are. I feel too much and I don't know how to express my feelings because sometimes I cannot communicate or comprehend them. And then I bang my head against the wall and give myself a concussion.
Yes, my autism causes me suffering. I am glad it doesn't cause you suffering, Chloe. But don't erase or deny my existence.
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Thoughts about misinformation among autistic advocates and higher needs autism
This post is a collection of tweets I made after watching a video from an autistic advocate talking about the book "The Reason I Jump" by Naoki Higashida. On the video, she claimed that some people discrete the value of the book because it was written by a severely autistic man with alternative communication and she claims that people think that "there's no way a severely autistic person could write this".
When I watched the video I was bit upset – to say at least – because it shows how uneducated most autistic advocates are and how little they actually know about higher needs autism and things they claim to support (such as the usage of AAC and the inclusion of level 3 autistic people).
The book "The Reason I Jump" was written with an AAC method called "facilitated communication". Facilitated communication is when a speech language therapist (or however is working with the person) physically guides the hand of the patient to letters and in that way they can spell words and sentences.
However, facilitated communication has a long history of controversy. There are many researchers that show that it's not an effective way of communication and that often times the person who is assisting the autistic person can influence what they want to say.
The critics of the book ARE NOT because Naoki is a level 3 autistic man who "couldn't possibly write this". It's because the method of AAC used to write the book is proven to be flawed and not express exactly what the person is communicating. And that is a GOOD THING! The more we learn about language disorders and severe communication deficits in ASD we can improve those methods. We can create better and more beneficial AAC techniques to allow and teach autistic people to communicate.
It doesn't surprise me that such video was widely spread within the autistic community, but it does disappoint me. It seems that most autistic advocates are completely uneducated about ASD, about AAC. Things they claim to advocate for. It seems to me that some autistic advocates want to find ways to prove that autistic people with severe communication difficulties are actually fully able to communicate and that all this time we were all just being fully ableist and underestimating their abilities. All we need to do is accommodate them and the deficits are gone! That's not how it works. Denying the disabling parts of autism is ableist as well. And trying to reframe the issues of the book "The Reason I Jump" as ableist is harmful and incorrect. It sets us backwards into AAC research.
It's clear to me that the community needs to be educated and needs to set aside their ideas that autism doesn't really cause any deficits and start acknowledging the real disability that autism is and how we can improve life for both higher needs autistics and low needs.
It feels like we are going backwards as a community, instead of developing and looking for ways to improve the lives of autistic people, finding therapies that help us, we are stuck in a "disability denial" phase.
I will keep advocating as much as I can.
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Thoughts about the article "Neurodiversity and disability: what is at stake?"
I had the opportunity to read and gather some thoughts about the article published recently by Dr. Eleanor K Jones. The piece talks about the pillars of the neurodiversity movement as well as cite recent works done by neurodiversity advocates. Dr. Jones also explains critics that are made towards the NDM and possible outcomes of its growth, specially in the UK.
The first remark I would like to make about this article is related to a campaign started by an English politician. Mentioned in the first page of the article:
"MP Robert Buckland has launched a campaign aimed at ‘closing the employment gap for autistic people and those with other neurodivergent needs’. The campaign supports businesses to ‘improve the life chances of neurodivergent employees’ (Buckland 2023) in order that they might ‘reap the benefits of a neurodiverse workforce'"
I could summarize all my critics about the NDM only using this exact paragraph. My problem with neurodiversity is not that it tries to improve the self-steem of autistic people by highlighting the good parts of being autistic. My problem is that they do that while completely erasing the real deficits and difficulties of being autistic. With the popularization of the NDM and the persistence in calling autism a difference and not a disorder, reducing social issues to double empathy problem and the disability that autism causes to the social model of disability harms all autistic people. It opens up doors to things like what the English politician is proposing: autistic people don't need disability money because actually they can work. Autistic people don't need support workers or care facilities because actually, they are just different.
And what I found most interesting about this paper is that there are real resources of people saying that. A lot of times, when I try to explain things I disagree with in the Neurodiversity Movement, I get told "well, actually, the NDM doesn't defend that" or when I say that high support needs autistics and people with intellectual disabilities are excluded from the NDM I am told "no, that's not true". Dr. Jones provides very good background to those claims that critics of the NDM have been talking about.
One other important point in the text is when Dr. Jones explains that criticism against neurodiversity is often filled with ableism and I'd dare to say pseudoscience as well. I think she is absolutely correct. Often times I see criticism of the NDM coming from people who believe vaccines cause autism, who treat autistics with intellectual disability as kids and reproduce other kinds of ableism. Criticism of NDM is important, it's valuable and necessary! We must speak up and we must keep fighting for more inclusion in our community. However, one thing we must do is organize ourselves. If possible, like Dr. Jones, write papers, share our experiences, share the experiences of higher needs autistics. But we can't rely on pseudoscience and anti-psychiatry like many in the NDM do.
A remark I would like to add is when Dr. Jones talks about activists who want to take autism off the DSM and who believe ASD is comparable to being LGBTQ. I won't address the problems with comparing ASD with sexuality/gender identity etc, neither the absurd claim that autism shouldn't be in the DSM. However, when the author points out these topics, Dr. Jones explains that, to the NDM, pathologization of autism equates curing ASD. I agree though I don't really understand why activists would think that. But I have a completely different opinion: understanding that autism is a serious developmental disability that causes serious deficits is the way we can improve treatments that give better life quality to autistic people and their families. Accepting that some have more severe communication and language difficulties means we get to improve AAC methods, we can teach them better how to express themselves. How amazing is that? But when we deny that these deficits exist and simply label them as a double empathy problem, then there's no reason to work on improving services and therapies that help autistic people.
Besides that, it seems to me that a lot of people think that accepting deficits means that we want to yell at kids "you are dumb! you are disabled, you can't do this and you can't do that". And while I agree some professionals are mean and do that to kids (I have been through that myself, trust me), that's not what I mean when I say we must accept deficits. We must treat kids with kindness and compassion, we must teach them they are different and that they do have difficulties. Their issues are not going to disappear if you don't tell them about it, they will notice that they aren't getting as good grades as their peers (trust me, we know), but learning to accept their difficulties is the way for them to learn how to love themselves as they are and not how they "could be" if they "tried harder".
At last, as Dr. Jones explains, the NDM tries to distance itself from the disability movement, as much as their activists try saying they don't. By denying impairments, by denying that autism is harmful, by denying the very real deficits autism causes, the NDM is pretty much creating an imaginary autism that is only experienced by a small but loud amount of people on the autism spectrum.
I want to thank Dr. Jones for writing such a good paper and for the person who sent me this. I really enjoyed reading. English is not my first language, so excuse me for any misunderstandings of the text.
I would like to end my thoughts about this with this amazing paragraph by Dr. Jones:
In short, neurodiversity’s insistence on autism and other mental disability as an essential, immutable part of one’s brain falls short of fully considering the dangers of the biological essentialism it implies because it does not reckon with this genealogy, among others.
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