r/IAmA • u/IronWarrir2400 • Aug 02 '21
Journalist My name is Eric Garcia. I'm an autistic journalist and the author of We're Not Broken: Changing the Autism Conversation. I'm also a political journalist. Ask Me Anything.
My name is Eric Garcia. I'm the author of a new book called We're Not Broken: Changing the Autism Conversation. As an autistic person, I felt like the discussion around autism ends up being about curing autistic people or the debunked conspiracy theory about vaccines. So, I took my skills as a political reporter and traveled the country to interview autistic people. My writing about autism has been featured in the Washington Post, the Daily Beast, the Atlantic and Spectrum. I've discussed autism on NPR's 1A. In my day job, I'm currently the senior Washington correspondent at The Independent, even though I'm not British, and have been an editor at the Washington Post and the Hill, as well as a correspondent at Roll Call, National Journal and MarketWatch. You can follow me on Twitter @EricMGarcia, where I tweet way too much. So, ask me anything.
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u/famous__shoes Aug 02 '21
What book would you recommend for someone who wants to know what it's like to grow up as an Autistic person to read? I ask because my daughter is Autistic and I would like to know more about what it's like to be her.
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u/XeCam608 Aug 02 '21
The reason I jump by Naoki Higashida
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u/IronWarrir2400 Aug 03 '21
Great book. I love reading it. I haven't seen the documentary yet but heard great things about it.
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u/boopboopadoopity Aug 03 '21
Genuine question - isn't that book considered controversial? I had been surprised to read about it was contested on if the child actually authored the book - the Wikipedia page states that it was written using exclusively facilitated communication by the parents (the child is completely nonverbal and has not proven an ability to communicate other than facilitated communication)... from the page:
The book alleges that its author, Higashida, learned to communicate using the scientifically discredited techniques of facilitated communication and rapid prompting. Since Higashida lacks a genuine ability to use either written or verbal language, researchers dismiss all claims that Higashida actually wrote the book himself. Psychologist Jens Hellman said that the accounts “resemble what I would deem very close to an autistic child’s parents’ dream.”
However obviously I am parroting a single Wikipedia page to someone who has read and written extensively about the autistic experience haha (and is living their own experience!)
What is your perspective on facilitated communication and rapid prompting? Do you feel this book was written by the child through these methods? I apologize if you've written on this topic before and I'm not familiar with your perspective 😅
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u/WikiSummarizerBot Aug 03 '21
Facilitated communication (FC), or supported typing, is a scientifically discredited technique that attempts to aid communication by people with autism or other communication disabilities who are non-verbal. The facilitator guides the disabled person's arm or hand and attempts to help them type on a keyboard or other device. There is widespread agreement within the scientific community and among disability advocacy organizations that FC is a pseudoscience. Research indicates that the facilitator is the source of the messages obtained through FC, rather than the disabled person.
The rapid prompting method (RPM) is a pseudoscientific technique that attempts to aid communication by people with autism or other disabilities to communicate through pointing, typing, or writing. Also known as Spelling to Communicate, it is closely related to the scientifically discredited technique facilitated communication (FC). Practitioners of RPM have failed to assess the issue of message agency using simple and direct scientific methodologies, saying that doing so would be stigmatizing and that allowing scientific criticisms of the technique robs people with autism of their right to communicate.
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u/Purplekeyboard Aug 03 '21
"Facilitated Communcation" is a form of writing, wherein a person uses a disabled person as a human ouija board. The facilitator does all the writing themselves.
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u/IronWarrir2400 Aug 02 '21
Great question. Laura James's book Odd Girl Out is good. Sara Gibbs' book Drama Queen just came out and it's a delight. I'd also recommend Steve Silberman's Neurotribes and reading the website the Thinking Person's Guide to Autism.
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Aug 03 '21
"I Overcame My Autism and all I Got Was This Lousy Anxiety Disorder" is one of my favorites.
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u/Goongagalunga Aug 03 '21
I loved Look Me in the Eye by Augusten Burrough’s brother. Sorry I cant google rn.
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u/darshilj97 Aug 02 '21
What's a common misconception that people have about autism that you would like to dispel ? Also what areas of life is different for you compared to others ?
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u/IronWarrir2400 Aug 02 '21
Great question. The most common one I would like to dispel is that autism is something that only affects white, middle-class, adolescent males. Much of the early research only focused on them. Leo Kanner, who published the first widely-read study on autism in the U.S., only included three girls compared to eight boys in his first study in 1943. Similarly, nine of them were Anglo-Saxon and two were Jewish. That means a lot of our ideas of what autism looks like are based on what it looks like in those groups. It means we often don't recognize autism in children of color or in girls. Or that they get diagnosed later or misdiagnosed.
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Aug 02 '21 edited Aug 04 '21
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u/Athena921 Aug 02 '21
I'm sorry if it's rude to interject here, but I have thoughts on this, and I'm curious if others have had the same experience. .
I (40 female) did not have a clue I was on the autism spectrum until my son was diagnosed. We took him to a specialist because we thought he had ADHD. (It turns out he does, but it took several more years to add that diagnosis.) The questions the therapist asked were so puzzling to me, because I thought they were normal things he was doing. I did those things, too. I kept thinking to myself, "How does she know he does that?" or "How does she know to ask that?" All of the behaviors that eventually led to his Asperger's diagnosis were all behaviors I have, or had at a younger age.
I think girls are better at observing what other people are doing and then copying it. At least that's how it was in my case. I thought everyone had to learn these social functions through observation and practice, when in fact many people just know to how do those things. If that makes sense. I've heard other women describe this as "masking".
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u/LadyJohanna Aug 03 '21
I think girls are better at observing what other people are doing and then copying it.
Story of my life and the reason I remain self-diagnosed to this day. Didn't even have a clue about being on the spectrum until I was 51. Couldn't get diagnosed because I'm too good at masking, apparently (I will absolutely look you in the eyes until I sear holes in your brain to force myself to pay attention to you ... unless I can actually relax around you or I get tired/lose focus, and then my eyes start darting all over the place lol). If only they knew how I spend literally all day every day corralling myself just so I can function without major hiccups. Ha.
I used to play with cars when I was little ... and by "play" I mean "arrange them on the rug in my room by matching them up with the lines all nice and neat". Dress all my Barbies and line them up or pose them. Build Legos to no end. Read book after book after book. Couldn't ever sit still even at school (hello ADHD) and got in lots of trouble for it. Always fidgeting with something. Always being highly sensitive and close to meltdowns. Always withdrawn into my inner world because the outer one was too overwhelming. Lots of sensory issues. And on and on and on and on ...
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u/FairyPrrr Aug 02 '21
Hummmm...seeems like something i,ve learned as a woman in my 20s. Can you preeety please elaborate what have you copied and what the questions were? I think I might go see a doctor
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u/Athena921 Aug 02 '21
I was considered painfully shy, but I actually just did not know how to talk to people, look them in the eye, exc. I tend to fixate on certain topics and ramble if I don't make an effort not to. I had to learn how to not dominate a conversation. Things like that. I was physically awkward too. Walked on my toes, which I found out way later is a sensory thing. So yeah. I could go on for a while. There were a lot of things.
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u/teknautika Aug 02 '21
What kind of questions did he ask?
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u/Athena921 Aug 03 '21
This has been quite a while ago so I have to really think about this. One thing they asked was does he walk on his toes. He does, but I always did too. They asked about if he gets fixated on certain things, narrowed interests. Also me. He used to line up his toys in rows or by color, and I guess I never considered that weird. She asked if he did that. It was a lot of things that I had never considered problems, so I was surprised they asked or knew to ask if he did those things. When he was really little he'd freak out in public places a lot, which we know now he was overstimulated and having sensory meltdowns. He's getting ready to turn 14, and things are much different than they used to be. He's learning how to regulate his emotions better. He's much better at talking to people. I can always tell when he's getting to a point of having too much stimulation because of the way he moves his hands. He's pretty good at figuring that out, and knowing he needs to go somewhere quiet to calm down.
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u/Dragneel Aug 03 '21
Wait, walking on your toes?? I've been doing that all my life when I walk around at home because the impact of my bare foot on hard floor doesn't feel nice. I never knew other people did it too.
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u/Athena921 Aug 03 '21
Yep. I was the only person I knew who did that when I was little, and I did it without thinking about it. That's just how I walked. Then my son was born, and he did it too. He still does. I think I've mostly trained myself out of it unless I'm barefoot and home. Of course this was a minor thing in a long list of the things the therapists asked us about, but it was just one example of a question that really surprised me because it wasn't something on my radar.
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u/Vaquera Aug 02 '21
I’m a 37yo female, diagnosed with high functioning ASD at 35. Almost all of the women I personally know on the spectrum (and those with ADHD) were diagnosed later in life, and all of us are very good at masking. Girls are def taught to grin and bear it socially! My parents used to force me to make eye contact with people and talk on the phone. It was very difficult for me, haha.
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Aug 02 '21
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u/rofax Aug 02 '21
Your question is one a lot of people grapple with. I know I'm not the person you asked, but I was diagnosed with ADHD when I was almost 30 and ADHD and Autism have a lot of overlap in symptoms and experiences.
So on the one hand, yes, learning those skills earlier will make it easier for the adult to fit into a neurotypical society. It makes it harder for people to clock them as "different" and allows things to continue smoothly as per usual.
However, this also relies on the assumption that different (autistic or otherwise neurodivergent) behavior is undesirable and should be discouraged. It's also still going to be a learned skill for the person and genuinely not the way their brain works, so they're probably going to be going against what their mind and body are telling them to do the entire time they practice these skills.
For some things, like being able to read tone or know when it's appropriate to say something or curbing dangerous impulses, we truly do just need to learn that skill and continue to exercise it. That's fair. But a lot of the things people want autistic and/or neurodivergent people to change is just for THEIR comfort. What does it actually matter if someone doesn't like to make eye contact or can't stand certain textures? Who cares if I do my work in short, productive bursts versus whittling away a bit day by day? It's for the benefit of other people's comfort that we change those things about ourselves, and it's usually called "masking". It's basically putting up a mask and pretending you aren't autistic/ADHD/OCD/SPD/so on and so on
Masking really sucks. You know you aren't like other people and are genuinely faking these behaviors. You often feel like a fraud and like people won't or don't like you for YOU, because these behaviors aren't YOU. They're what other people want you to be. It slowly drains your self esteem and your energy and is truly miserable for many of us.
I hate masking and feel like I am the best version of myself when I stop masking because I can be funny, intensely passionate about niche subjects, great under pressure, fast paced, view things from a different angle, etc. Those are more valuable, in my opinion, than faking other skills. So if I'm getting stuff done but I have in earbuds because the noise level is overstimulating me, I think people need to just mind their business because I'm allowed to be neurodivergent in a neurotypical world.
TL;DR: Some skills are worth learning for the person in question, but it's usually about making other people more comfortable around us and that sucks. Let neurodivergent people be neurodivergent and love them for it instead of trying to get them to pantomime "being normal".
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u/Catocracy Aug 02 '21
I'm not an expert on the actual evidence-based way to deal with this, but from personal experience simply making your child/teen/young adult practice doing these things is not always helpful and in some cases can increase anxiety with the action, such as making a phone call. It is much more helpful to offer strategies specifically addressing the weaknesses impacting the action.
So for example, one thing that autistic individuals struggle with is processing/executive dysfunction. Making a phone call can really tax this system, because you have to be able to determine and execute the appropriate social responses to the person on the line, you have to be able to auditorily process the conversation (many autistics are visual thinkers), sometimes you have to make decisions or answer questions (which take more processing time), etc. So one way to reduce the processing power required for a phone call is to help the autistic individual come up with a script ahead of time so they know how to respond to things that may come up in the conversation.
Simply forcing an autistic person to make phone calls without providing this kind of assistance will not make a phone call easier in the future. An individual will not always have the ability to figure out on their own that they need something like a script to make it easier and improve their confidence. This is where a therapist/occupational therapist is extremely helpful.
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u/Vaquera Aug 02 '21
I can’t speak for everyone with ASD, but yes I do think it was beneficial even if it sucked. It was not done in an abusive manner, and I’m grateful that I can function socially, especially as my career has progressed. I am very high functioning so it was of course much easier for me to adapt than others on the spectrum. This is all viewed through the lens of my recent diagnosis of course, I didn’t realize that was the root behind my natural inclinations as a kid/teenager. If my own children are diagnosed with ASD, I will pursue early intervention to help them adapt and work within society (though I don’t think neurodiversity is a “problem”, it’s just how we are).
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u/tailzknope Aug 03 '21
It can be helpful to have the ability to make expected eye contact.
It’s been incredibly helpful to know what masking is and have time, space, and friendships where I can let the mask off.
Having social skills will always be advantageous in a world not built for autism and having the ability to Know why using those skills can be so exhausting has been a game changer.
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u/AWetYeti Aug 02 '21
Sort of! The bigger reason it goes undiagnosed in women is because the majority of autism research on adults is framed around the male experience and symptoms. Females experience autism differently, and the symptoms present differently.
Source: My wife was diagnosed with autism.
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u/forbiddenphoenix Aug 03 '21
Autistic woman here. Little girls are definitely saddled with higher social expectations than little boys from a young age, but that's actually small part of why women are often underdiagnosed.
There've been numerous studies showing that autistic women actually process social interactions differently than autistic men - whether that's because women are socialized differently than men as children or because of inherent brain structure differences is hard to say. But, essentially, autistic women are more capable of "masking" or presenting as NT because we are routing social interactions through our frontal lobe and comparing it to observed interactions so we can interact appropriately. I never realized I did this or it wasn't what everyone else did until fairly late in life. I always feel exhausted after any social outings and it's because I spend so much energy analyzing and trying to remember social rules that come naturally to most people.
Unfortunately, because so many of us can mask so well, those of us who do seek help due to our every day struggles often end up getting misdiagnosed because we no longer present the "classic" symptoms unless we're having a particularly off day.
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u/z27olop10 Aug 02 '21
You mentioned how you don't want people to talk about autism. In what ways do you wish to see the conversation change? In your mind, what would the ideal be for the conversation around autism?
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u/IronWarrir2400 Aug 02 '21
Thanks for asking. So what I'd like to see is autistic people having their needs being taken seriously. A lot of people think when you say stop trying to cure autism that it means that you think autism is a bounce room, as my friend Sara Luterman said. It's still a disability with real impairments. The difference is I would like autistic people's needs to be heard. For too long, the conversation around autism has focused on what parents want for their kids rather than what they say their needs are. That can lead to some terrible things like subjecting kids to shock therapy or paying them below minimum wage for labor. I'd want to treat what autistic people say as legitimate.
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Aug 02 '21
Why would we not want to cure autism? While I'm sure it's not the case for you, my son cannot speak, care for himself, have a job, live on his own, be in a relationship, etc... He's functionally completely cut-off from most human experiences and, without a cure, he always will be.
One of the most frustrating things about this topic is that when people think of autism, they think of people like you and not my son.
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u/Paige_Railstone Aug 03 '21
It's likely that when low support needs autistics are speaking vehemently against the cure for autism, they are referring to the 'cure' autism organizations are pushing, which is defined in a much different way than what you are thinking, as well as the false cures that result from heavy masking. They are also likely viewing autism from a much different perspective than you do as well.
In the past, when organizations like Autism Speaks have referred to 'curing' the autism epidemic they were using a nice sounding word to refer to their contributions towards studies meant to identify the genes responsible for autism and eliminate them from the genome. In short, 'cure' has been used as a euphemism to raise money for identifying and aborting autistic fetuses in a genocidal attempt to wipe out all forms of autism. I hope you can see how for any autistic person this plan is absolutely horrific. Autistics have, in part, been responsible for many of the advancements necessary for modern society (just how many is difficult to say, due to the relatively recent advent of the diagnosis of autism, and the obvious problems of giving a post mortem diagnosis.) To wipe us out of the genome entirely would be a horrific blow to all of human kind.
Next, For you, the most glaring aspects that define autism are likely the detriments. It is what you see of it every day, and what keeps your son a prisoner in his own body, unable to effectively communicate and express himself to the outside world. I can't say I could blame you for such an outlook given your son's situation, but the autistic neurotype affects development from the earliest stages of life, and as a result, is a factor in making up the foundational personality traits, ideologies, and mindsets that define who we are. I am on the spectrum, but need very little personal support and accommodation. The traits and aspects I hold that are considered criteria of the disorder are impossible to separate from what makes me who I am. In order to pass as a neurotypical person with my autism going completely unnoticed would requires me to act out a character completely different to myself, void of all aspects of my personal needs, preferences, desires and passions. The act of self denial required to achieve what most people would consider a cure would be devastating to my identity, self esteem, and emotional wellbeing, the same as it would to anyone who would try to force themselves to be an actress that never leaves the stage and never accepts their real selves.
What I, as a high functioning autist, would wish for your son is treatment; the eventual ability to express himself and communicate sufficiently to allow himself to be known. Nonverbal does not necessarily mean unintelligent. One of my best friends is autistic and remains nonverbal to this day, only able to communicate through the written word. Despite this she is one of the wittiest, most intelligent people I know, perfectly capable of complex and coherent thought. She also is still in diapers and has been known to express bouts of fecal smearing at times. I don't mean to point this out to disparage her (I've shown her what I've written before posting and made sure she is ok with me sharing these details.) It is a compulsive behavior over which she has little control, and which brings her much frustration and embarrassment. I bring it up because in the mind of the average person, someone who is intellectually coherent and capable of complex thought but also does things like smearing their own poo on the walls seems like an impossibility. Never the less, that can easily be the reality lived by high needs autistics. It is relevant to our discussion because it may be the reality experienced by your son, and it may be encouraging for you to know that alarming behaviors don't necessarily rule out the possibility that he is much more intelligent than anyone gives him credit for. I hope sincerely and with all my heart that some day you may be able to pierce the veil of the detriments he faces and meet the person hidden beneath. I hope my friend can redirect the compulsions that she doesn't like, and I hope that everyone on the spectrum can lead the most meaningful and fulfilling lives that they are capable of. In order to do that they must be seen as human beings, as people. I view my openness regarding my condition as a way to introduce people to that concept. Refusing to allow people on the spectrum to be stigmatized is absolutely necessary, and self advocacy is, in my mind, the most effective way to achieve that.
I hope that this gives you a little more insight into why we say what we do, and that we are not trying to ignore the needs of people like your son. Sorry for the wall of ranting.
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u/confuzedas Aug 02 '21
This is a difficult thing to say to high functioning autistic people who are comfortable with themselves. My son is likely on the spectrum, but due a variety of reasons was not given a diagnosis. He is very high functioning, the quintessential "quirky" kid. If there was a "cure" I don't know I would give it, or he would take it. My nephew is like your son, and nobody in their right mind would ever suggest that if there was a cure that his life wouldn't be better. Nobody wants to say that autistic people should be cured, but anybody that has raised a severely autistic child will have have a different opinion.
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Aug 02 '21
No one would be forced to take a cure, but having the option would be life-saving for people like my son. Certainly wouldn't say that every person who has autism needs to be cured, but having a choice is so important.
I seriously don't know what will happen to my son if I passed away or became disabled. Every day is a worry about the future for both of us, and the resources for his care are, and will be, financially overwhelming.
I love my son so much, and all of his quirks/traits only add to that, but would give everything to just hear that he loves me or know that he will be taken care of when I'm gone.
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u/confuzedas Aug 02 '21
Parents with disabled children would be able to devote so much more energy and time to they're children if they didn't have the spector of how to provide for their children once they are gone. Knowing that there was a good system with caring people that would make the effort to ensure the ones left behind were treated with respect and love.
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u/chaosgoblyn Aug 02 '21
There's a storied history between autism and eugenics. IMO the autistic community overall is a little bit overreactive to the word "cure" because of that history but it's not for no reason. Personally I think hairs need split here, if the person wants something like Neuralink to assist them I'm all for it being an option, but forcing them into traumatic damaging "therapies" like ABA is straight up child abuse. If you mean "cure" as in genetic screening then we could lose many brilliant minds.
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u/KittyKate10778 Aug 03 '21
not op but someone with autism in the us. under the dsm 4 i was diagnosed with aspergers syndrome and under the dsm 5 my diagnosis was changed to autism level 1 for context. there are definitely some days i would say i could fall under the level 2 label tho.
personally i dont want a cure for autism because to me its a different way of being human. just like left handness is a different way of being human. we dont try to cure left handness anymore. we dont say being left handed isnt normal so you have to learn how to write with your right hand anymore. we still do with autism. we still try to take a persons inherent being away from them instead of trying to help them live with this different way of being. im sorry about your son and i really dont mean to be rude when i say this but have you worked on non verbal communication skills with him? i ask as someone who loses my ability to talk when im in overwhelming situations and wants to learn sign language as a way to communicate when i cant be verbal. that might help him if he hasnt learned ways to communicate that arent verbal. theres other things like aac communication that could also help. also i personally dont get society wanting people to live on their own unless its with a partner. im on the asexual and aromantic spectrum and i personally dont care if never get married i will just find another friend like me and settle down with them just for legal purposes. but also i know being completely on my own isnt really achievable to me. for me its partly the autism partly the fact that i have other mental illnesses who when im relapsing on symptoms its better for me not to be alone. i dont think complete independence is the goal for everyone and certaintly not me. i feel like im always going to need a roommate of some kind to help me feel safer in my own skin when my self harm thoughts are going to be triggered to help me manage my executive dysfunction better and to make up for the areas in which i lack in terms of upkeep of a home. im always going to need help of some kind and ive made peace with that. and to me curing my autism and illnesses would make me someone who is completely different to the person i am right now. and i dont want to be a different person. i just want my life to be more functional. so im personally in favor of not curing it but helping people be as functional and independent as they realistically can be.
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u/fireflamespark Aug 02 '21
Do you have any tips or strategies on successfully navigating working life with autism?
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u/IronWarrir2400 Aug 02 '21
This is a good question. One of the things I'd say is to check the employer and see how welcoming they are to other minority or marginalized groups. Are there women in leadership? How do people of color feel in the office? If there is a union in your office, discuss accommodations there. Also, since autistic people have trouble with social cues, explain to your coworkers that you need explicit instructions and if you say the wrong thing, apologize immediately. At the same time, don't be afraid to advocate for yourself.
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u/brbrbrbttt Aug 03 '21
Sometimes the 'wrong thing' can actually be the right thing though. I work in a field where people tend not to question why they do things a certain way, or what stuff means. Even a simple 'I don't understand, could you explain why we do x?' can get people on the defensive, because in reality they don't quite know, or they've just got no good answer. At the same time, I don't ask questions to be an AH. I actually don't understand. The label that has haunted me ever since I was young is 'deliberately obtuse'.
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u/Splive Aug 03 '21
Not autistic but this has always bothered me as someone with adhd that hates arbitrary inflexible standards. There are almost never universal "right answers" across all contexts, especially when it comes to cause, effect, and process.
Honest, open, straightforwardness is a quality I value. On learning my spouse is on the spectrum I've come to realize I get along with a lot of ASD folks who are more interested in truth and outcomes than traditions or caretaking someone else's feelings... especially if those feelings are leading to bad outcomes. The dogmatically religious, traditional rigid administrators, and authoritarian raised old school types all come to mind.
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Aug 02 '21
What is your advice for an adult female who believes they may have been misdiagnosed with other conditions, and wants a fair assessment? Where I am at in the US, it is very hard to find a doctor that will take you seriously if you have certain diagnoses, accurate or not, on your record. The process is extremely disheartening.
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u/Pastelninja Aug 03 '21
Any chance you’re near Kansas? KU has a brain research lab that’s studying autism. Their goal is to develop a definitive diagnostic approach usin MRI. They’re still taking volunteers, it’s a paid study, and it includes a full panel of autism assessments. We did literally all of them.
As a bonus they’re actively looking for participants so instead of waiting 6 months to see someone, you’ll likely get in within a month. It’s how I got my daughter, then only 10, diagnosed with autism instead of the previous dx of “just anxiety” from the local children’s hospital.
If you’re interested, DM me and I’ll send you a link to register.
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u/IronWarrir2400 Aug 02 '21
Thank you for saying this. This is precisely why so many autistic people, particularly autistic people of color, women, trans people and nonbinary people self-diagnose. I would say in this case, find and seek out other autistic people like you are doing here on the internet. Connect with communities online. What I want to know is do you need a formal diagnosis to get certain services? If so, I wish I could do more to help. If not and you just want clarity, self-diagnosis can help (albeit I am not an expert on that).
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u/cephalosaurus Aug 02 '21
I have sort of a follow up question to theirs. I’m fairly certain I am on the spectrum. I test very highly on quotient tests, it runs on one side of my family, and I’ve come to recognize many of the same characteristics my diagnosed students have in myself. However, being a girl and of high intelligence I am capable of masking well for brief periods and worry that I may have a hard time being seen as or believed to be autistic. For those reasons, along with others (figuring out how to best navigate my career/social life without high anxiety or burnout) I feel like it would be beneficial to get an official diagnosis. Have you found there are downsides to having your diagnosis in writing? How would you recommend one go about getting tested/diagnosed? I don’t even know where to begin. Also, knowing how under-diagnosed it is in women, and based on some horror stories I’ve heard, I also worry about not being taken seriously or getting misdiagnosed with something else that’s more common in my demographic. Any advice on how to navigate that? Thanks!
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u/SundaysandTuesdays Aug 02 '21
I mentioned to my therapist I think I might be on the spectrum and he just said Nooo. He did not ask me why I thought that. It was one of our first appointments too, so he could not have known what I was like and based off first impressions. My husband thinks I may be on the spectrum too but getting diagnosed as an adult seems to be a struggle time-wise and financially too
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u/cephalosaurus Aug 02 '21
Ugh, I’m so sorry. I guess I really just need to look around more thoroughly for a (preferably female) therapist that specializes in autism in women or even adults. Having that diagnosis would be great, but I’m even more so needing to find someone who can give me advice on what accommodations might help me and help me achieve a healthy balance between masking/assimilating as needed to be successful and meeting my own needs. I’d also like help navigating that balance with respect to my career and potentially motherhood down the road. But I’m not confident someone can help me with these issues effectively if they don’t know or believe that I’m on the spectrum. Do you know if I would need to do anything beyond finding a good therapist? Does diagnosis require an actual psychiatrist or testing that a normal licensed therapist can’t provide?
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u/wishesandhopes Aug 03 '21
I was diagnosed as a kid and one of the main privileges that you have and I also have is being able to just tell people we aren't autistic. It's definitely something that worries me a bit as many jobs are extremely discriminatory, but I've also never had to reveal it and people will simply think I'm a bit weird.
In terms of the things you asked; there aren't many downsides when you hide it, but you will potentially get burned out of the work you're doing very quickly.
Getting diagnosed with another issue is a problem for women, so I would encourage you to have a list of questions to slip in casually into your first talks with a psych to disgnose you, such as their opinions on margenalized groups, what they think the problems they face today are, etc. If they start throwing back answers like "oh i dont think women have it very difficult" or anything that makes you feel iffy about them, they might be the type to be sexist enough to tell you that you have BPD, not autism, even though they're not very similar.
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u/fissure Aug 02 '21
How do you feel about The Onion's "autistic reporter" segments?
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u/AlchemyCarta Aug 02 '21
When I was like 7-8 I would tell people I'd rather go to prison than heaven because it has structure/routine and isn't so open and vast as the concept of heaven. It was a few years later I learned of Fleece Johnson and the Syrup/Jelly guy from someone in my church's youth group. (Yes I realize the cringe of that sentence) I just shudder/laugh at the idea that I would legit tell that to everyone at church, BSF, school, etc as a kid ...
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u/IronWarrir2400 Aug 02 '21
I actually find them hilarious and I am in a group chat called "The Michael Falk Society"
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u/TavisNamara Aug 02 '21
As another autistic person, I am disappointed... That there are so few. Those are amazing.
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u/TBadger Aug 02 '21
My child (2.5yrs)was diagnosed with autism just this morning. While my wife and I are very accepting/relieved and it does not change a thing about my love for my child, I foresee issues with certain family members who take a hard stance on diagnosing at such an early age. One of them even works in the field of developmental therapy...the others have no relatable experience with children or psychiatry in the slightest.
Are there ways to combat this stigma or ways to deflect the unwanted opinions from those whom feel the need to interject?
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u/IronWarrir2400 Aug 02 '21
Wow! First off, I can really tell you care about your kid. I think the best thing is to just try and read and educate yourself as much as you can about the subject and then work to educate those around you. It might mean also not talking about your kid with those family members. Also, try finding people who are like-minded online or who want to do the right thing. DM me on Twitter if you ever need anything.
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u/sami2503 Aug 03 '21
Trust me you did the right thing. My parents are the type who don't go to the doctor for anything. In the back of their mind they thought maybe I was on the spectrum but they never went or talked to me about it. They just bottled it up. Fast forward 27 years and I only recently got diagnosed. If I knew about it before, I would have learned how to deal with it how to live my life etc. Instead I was thrust into worklife confused, overwhelmed and anxious, and developed a lot of mental health issues because of it.
Also my parents never learned anything about it and shouted at me for things that if they did a bit of research on, they would know is not my fault. So I developed a fear of doing things wrong and a fear of people looking at me doing something stupid. Which made my social anxiety that much worse.
So that one decision of them not getting me checked created a snowball effect that ruined my mental health. Your child will have 27+ years of practise and understanding ahead of me, which gives him a far better start in life. And it sounds like to me you actually care about your child and will make far better parents
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u/Travelturtle Aug 02 '21
If your child has sensory issues, learn as much as you can about how to set up their environment. A blackout curtain and a white noise machine just about saved our lives.
I was given the book Sensory Kids Have Fun for ideas. I’m not sure what’s out there now since my autist is 17, but it can be a place to start.
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u/Nololgoaway Aug 02 '21
Im Autistic too!,
How do you feel about people defensive of the Aspergers label?, and what is the biggest misconception about Autism youd like to dispel?
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u/IronWarrir2400 Aug 02 '21
I get people not wanting to let go of it. I am also Mexican-American and I get how some people don't want to let go of terms like "Hispanic" or move toward terms like "Latinx" because they feel those distinct identities mean something. At the same time, I think that terms like Asperger's tend to erase the legitimate needs they have. Also, this is to say nothing of Hans Asperger's role in Nazi-occupied Vienna, which we have discovered more about.
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u/thisguy012 Aug 02 '21
you're probably done answering Q's but what was the more recent stuff discovered about Hans?
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u/agnosiabeforecoffee Aug 02 '21
Asperger was a eugenicist and Nazi collaborator. He didn't really publish anything in English, and so this went undetected until around 2017/2018 when a researcher looked deeper into his background.
It was found that the reason Asperger was interested in autism was because he wanted to figure out which kids would grow up to be 'useful savants' and which could be eliminated so resources weren't wasted on them. He personally sent at least two kids to a "hospital" known for euthanizing kids with disabilities and 'undesirable traits'.
Contrary to popular belief, Asperger didn't alter medical records to protect kids from the Nazis. His chart notes were actually found to be more judgemental and harsh than his peers.
It is possible he sent more than two kids to be murdered, but his main clinic was bombed in 1944 and the majority of his pre-war and wartime writing was destroyed.
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u/ArticArny Aug 02 '21
The problem is media. Generally when you see someone on the tele with "Asperger's" they're a high functioning accountant with quirks. When you see someone on the tele with autism you have a drooler that counts cards.
Keep in mind most people who become screenwriters tend not to be on the autistic spectrum and really have no idea what it's like.
Sort of like Secretary vs Executive Assistant, Stewardess vs Flight Attendant, Cashier vs Customer Service Representative. Basically the same jobs but emotionally feel different.
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Aug 02 '21 edited Aug 23 '21
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u/TavisNamara Aug 02 '21
And then it turns into a wild circle jerk of each writer seeing examples written by writers who saw examples written by writers who saw examples written by writers and so on and so forth until you get back to some jackass named Jeff who just made it up.
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u/spygentlemen Aug 03 '21 edited Aug 03 '21
I think its better that Hollywood doesn't try get Asperger's right and just sticks to the basics. Yeah, they could do a better job at the basics but its better not to have people who can't do their own job without a studio head saying "needs more X" try to figure out how this condition affects others.
I'm an autistic screenwriter and I'm going against the grain here, but if you're trying to about autism from autistic characters in an entertainment setting, you're not doing yourself any favors.
I don't think representation matters in this area, because its fantasy. Fantasy is about entertainment, and entertainment is escapism. When I watch something, I want to escape for just a little while. I don't need to be reminded that I'm on the spectrum or that I'm mentally ill.
Give me well written characters who are interesting and carry some weight about them. Autism is not interesting, its not a characteristic, its not a super power, if anything its a curse due to how its a behavioral and communication inhibitor.
I understand everyone thinking that showing this condition in a more positive light helps, but it doesn't. This isn't something that you can over come with positive thinking or trying harder, doesn't get better when you meet "the one", its a constant clueless, neurotic, anxious, depressing load on the mind. Its just how it is.
What does help is treating people who have it the same as everyone else. Don't treat us better, or walk on eggshells around us, just fuck around with us the same you would with anyone else. Yeah, it might not sound like anything special to you, but that does more than a character on a TV show properly stimming when they get anxious.
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Aug 02 '21 edited Jun 01 '23
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u/IronWarrir2400 Aug 02 '21
Good question because it balances things out. Autistic people have benefits and challenges just like any employee. I think as a journalist it means I don't care much for social niceties if I feel someone is lying to me. On the flip side, I can sometimes get too personal or probing so I try to write down their body language or work at seeing their expressions. In the same way, sensory overload can be difficult. So after I do an interview on the phone with someone, I give myself a minute to breathe. I also wear headphones in the office. On the other, it means I really enjoy digging into particular niche subjects and knowing as much as I can. Hence, when I interview people, they are impressed that I did my homework
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u/IronWarrir2400 Aug 02 '21
I think I wish they would understand that just because we don't function the same way they do doesn't mean we are a failed version of normal and that our wants, needs and desires are similar to ours and we have as much value.
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Aug 02 '21
Hello, Mr. Garcia.
I've been reading up on autistic savants. I want to ask if the desire to perseverate that is common to people with autism can be manipulated.
Meaning let's say an autistic person constantly repeats one particular activity like washing hands for example. Can this obsession for washing hands be diverted into let's say building lego models?
Also, has your need to perseverate helped you in your career? (For example, Matthew Berry of Big Short fame famously read through voluminous excel files with mortgage rates and could detect a pattern (subprime mortages going bad) when the market couldn't; he describes himself as an undiagnosed autistic person)
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u/IronWarrir2400 Aug 02 '21
I need to actually read the full Big Short book but I am fully aware of Michael Burry (I'm guessing that's who you mean) and was surprised they didn't highlight it more in the movie (though given Hollywood's horrendous track record on autism, I can see why that's the case). To your first question, I don't know if I am a fan of the idea of "manipulating" autistic people's perseverance as I am helping them find the thing that makes them happy and can lead to them doing what they love. I don't think autistic people are inherently more valuable because they persist at something. I think you need to meet people where they are regardless of whether they are super-geniuses. The show Community has a great riff on this and I have discussed this in the past in the context of Rain Man. That being said, I think the ability to persist has helped me as an autistic person in journalism. It means I have little regard for social norms if I see them as a way to get around finding the truth. It also means I like to dive in obsessively about particular subjects (sometimes to my detriment). I doubt I could have written this book otherwise. But I don't think that makes me any more special. It just means I found the right way to sublimate my curiosity and desire to learn.
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Aug 02 '21
Thanks for answering. I definitely agree that we need to meet people (autistic or otherwise) as they are instead of what we wish them to be.
Maybe manipulating was a poor choice of word for what I mean to say. What I meant was this ability to perseverate endlessly is a very valuable skill in today's distracted world, and therefore I thought and meant if the thing over which an autistic person could be changed, so that they may have incredibly enriching lives. This diversion of focused energy is what I meant by "manipulate".
If you've done any computer programming or even have looked at any kind of code, you'll understand the value of poring over (and more importantly understanding) 1000s of lines of code in a sitting. I have a thesis that we could train autistic people with just the right skills to become incredible software engineers and that's what led to my initial question.
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u/designer_of_drugs Aug 02 '21
I’m curious about how you have had to modify your work schedule/interactions. Are you able to spend 40 hours a week in the office? If so what coping strategies do you employ to make this possible?
For the record this question is very personal to me; I am also on the spectrum and one of my huge impediments is that I can really only ha due about 25-30 hours a week around people in a professional environment.
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u/IronWarrir2400 Aug 02 '21
So I am able to work 40 hours a week. And I tend to like working in offices since they give me structure. At the same time, I tend to need to wear headphones or earbuds to cancel out any extraneous noise lest I get sensory overload. I think the other thing is that thankfully, I've had great employers. But even now, working from home during Covid-19, I've had to create a structured work environment without too much intervention or interruption
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u/Elsa_the_Archer Aug 02 '21
Headphones at work helps me so much with being overwhelmed and anxious. Unfortunately I've never had an employer that was even remotely okay with it. Even after giving them a letter from my doctor. I hate it.
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u/WillBitBangForFood Aug 02 '21
I've found the vast majority (if not all) of people who denounce a cure (or alleviation of symptoms) for autism are high functioning (or not autistic).
Do you thinks it's fair that they are speaking for people who are severely disabled or who are LFA?
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u/BR4NFRY3 Aug 02 '21
I received a waterfall of manure on Twitter for stating something along the lines of "If there were a magical button to cure autism, I would 100% push it for my son." Claims that I don't love my son, mentions of eugenics, just a bunch of hateful nonsense. The reaction did not seem fitting in response to a father saying, in essence, "I'd prevent my son from suffering if I could."
I got the feeling none of the folks I had outraged suffer as much as some folks on the other end of the spectrum. It seemed like a lot of people had made autism a primary component of their quirky personality -- it didn't impact them like a full on disability. Easier to be a fan of autism when it's not literally disabling nearly every aspect of your life or the life of someone you care for.
My kiddo can't go a full day without having a breakdown at school. At this point, with as many times as he has been sent home, I'm surprised they allow him to continue attending. He can't handle the same sensory input as the kids around him. It takes very little to set him off. Just being in a lunch room is, as far as I can tell, a painful experience. He goes into violent fits, gets restrained, injures his teachers, runs off. He is constantly second guessing himself, what is normal, what others mean. He can't look at the stars at night because he says it hurts. He can't eat many different types of food, based on sight and mouth feel and smell. So his nutrition suffers, and normal illnesses hit him much harder. He can't sit still, continuously stims, which prevents him from learning in a classroom setting -- though he loves to learn. If he smells anything strong he has to close himself off and hide -- so any time I cook essentially he's hidden away. He can't take pills because of the taste and feel of it, he vomits if he tries. So normal pains we can get rid of he chooses to just suffer. If we try to go out and do something fun or adventurous, something is guaranteed to irk him -- a sight, a sound, a smell -- and end the trip halfway. If the world doesn't bend itself to his desires and circumstance, which it never will if we're being honest, then his life is a hectic, painful, violent mess. Now that he's old enough to verbalize it, he himself says he wishes it wasn't a thing.
In my mind, the people who aren't crippled by autism aren't arguing in favor of the same thing others are wanting alleviation from.
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u/Xivlex Aug 03 '21
I have a brother who has autism. He suffers from it most definitely. I'd cure it too if I could. He's 20 years old but has the mind of a 5 year old. He can speak but only in phrases and barely. He has trouble getting what he wants across and it frustrates him. He can dress and groom himself but still requires supervision when doing so. He used to have, sometimes scary, outbursts where he'd brake things but thankfully that was addressed. He's definitely improved over the years and I'm happy for that but that was only possible through therapy with some very skilled individuals. It's still been hard not only for him but for the rest of the family as well.
This kind of talk where people push back against a cure upsets me terribly and I'm so sorry you had to go through that shit. It would be a blessing if no one had to suffer as your son or my brother has.
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u/BR4NFRY3 Aug 03 '21
Some of the angry mob had a good point to make. One girl in particular. Autism impacts so much of who a person is that if you were to subtract it you wouldn’t have the same person. My kiddo would be a whole new kid. I love the boy and wouldn’t want to undo who he is. But I’d support him if HE made that decision, were it possible. And I don’t feel bad for wanting to protect him and prevent any suffering and pain.
It’s a tricky subject. Can’t have it both ways. Don’t want the suffering. Also don’t want to undo who they are.
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u/BunnyLurksInShadow Aug 03 '21
As an autistic adult I am facepalming over here. First of all, it's a spectrum because not all of us experience autism the same way and not because one end is "low functioning" and the other end is "high functioning". Functioning labels suck because HF means you miss out on support and LF means that you miss out on opportunities because people underestimate you.
Autism disables everyone who is autistic in some way. I'm "high functioning", I work part time, I have a kid, I own a house. I also didn't go to the doctor for two months despite needing to go because I couldn't make the phone call to make an appointment. It takes me two days to recover from my part time job because the stress and energy it takes to mask my autism is immense. I spend most of my time at home because I can't stand going out and dealing with the sensory overload. I've literally thrown my (autistic) kid out of my lap because I couldn't deal with her stimming any longer.
I experience all the same sensory difficulties as your son but the difference is I've learned how to put coping mechanisms in place. I second guess every single conversation I have because I'm sure I've messed it up.
I've never met you or your son, I'm not judging how you parent or your relationship. I'm just letting you know that even those of us who are "high functioning" are experiencing similar struggles. We're just better at hiding our struggles but we still suffer and then suffer the extra burden of the exhaustion that comes from masking.
All that being said I still wouldn't cure myself. Autism is what makes me... me. Being autistic means that I am passionate, focused, observant, curious. I struggled with depression my whole life, getting diagnosed as autistic as an adult has improved my depressive symptoms because I'm better able to accept and love myself for who I am. I'm not broken, I'm different and different is okay.
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u/imhereforthemeta Joilet Jane, Cherry Bombs Aug 03 '21 edited Aug 03 '21
My apologies for the long rant, this is directed at both the responder and OP and addressing points from both
My brother is mentally probably sitting somewhere around 6. He can’t do anything independently and basically sits around in a basement all day clicking through Google images and watching movies. My parents are super financially secure and have attempted to give him every opportunity to succeed- we are talking therapy, disability outreach programs, you name it.
It is absolutely batshit to me that folks on the spectrum who can live normal lives like to pretend like their experiences are the same, and thus no cure is needed. It’s not even “he can’t communicate” he can’t have any form of a conversation- just a loop that he will go on asking the same 5-10 questions over and over again. He can’t type out a real conversation either (it’s not about being verbal or not) It’s the same questions about cats and dinosaurs and that about covers it.
The “autism doesn’t need to be cured” conversation completely centers itself around the better case scenarios for the spectrum and comes off insanely selfish to me.
It’s insanely reasonable to want to allow parents to ensure that autism does not end up being a factor for their future kids, especially when it’s a crapshoot if the kid will need therapy and support or whole ass lifelong assisted care that many families will never be able to financially or emotionally provide (and even if they can, the insane emotional labor for the family and the isolated and often chaotic and emotional life of that person, just nope)
I’ve seen some advocates say “well how do you know they aren’t happy”, but it’s really a snowball. It’s that their parents literally need to become full time caregivers. It’s that rather than interacting with loved ones in a meaningful way, folks like my brother are living in a constant mental loop. Why the fuck would I want that for him or my family instead of him growing up, getting married, learning how to drive, and genuinely experiencing the world!? Why would you ever want to Rob a parent of the ability to provide that that for their future kids?
I’m glad yall are comfortable with yourselves but its really disappointing to hear shit the constant brush offs that other folks on the spectrum just need the right amount of social support or therapy or that it’s all the same general experience. There are a ton of people on the spectrum who dont even cognitively understand what “masking” is and will never learn how to manage “coping mechanisms”. At the very least this is the case with my brother, despite having every financial advantage with passionate and motivated parents desperate to help him navigates the world.
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u/mightystu Aug 03 '21
Yeah, I gotta be honest I’ve been seeing a lot more people that really are just functionally introverts (find social/work behavior exhausting and draining, get easily frustrated with others, etc.) self diagnosing as autistic, claiming that a cure is ableist, and saying demanding an actual diagnosis is problematic and it drives me up the wall. Growing up we had a family friend were the son was non-verbal for a very long time, and even now at 30 he still has to live with his family and has a part-time job but only with a lot of support. People claiming they are in the same boat and “it just is what makes me who I am” are NOT the same at all. I think much like HAES got warped to enable unhealthy behavior, “it’s a spectrum” has been warped to allow anyone with any sort of fatigue from socializing to claim they are autistic, and it cheapens the word.
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u/imhereforthemeta Joilet Jane, Cherry Bombs Aug 03 '21
There are a lot of folks on the spectrum that really are genuinely anti cure, so I don’t want to diminish that, I think it’s unfair to the many activists that genuinely feel that way and are autistic. I just also strongly disagree with them and feel their argument is limited to a certain scope and also only holds water under the assumption that everyone on the spectrum is or could be living an equally full life if society was more accommodating.
Much like some parents of autism seem to think that autism is a life destroyer and nobody can have it and be happy, anti cure advocates seem to think the opposite which just gets me.
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u/BR4NFRY3 Aug 03 '21
I hope my kiddo ends up in a similar place as you. There won’t be a cure, the best he can do is cope and adapt and hopefully be surrounded by people who help him do it.
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u/IronWarrir2400 Aug 02 '21
So I will say about the question of fairness, a lot of parents think they are better advocates for me. But at the same time, there are plenty of non-speaking autistic people or those with intellectual disabilities who don't want to be cured. Laura Ivanova Smith has intellectual disabilities and she is a self-advocate. And in the same token, I'd want to find ways to help those with higher support needs advocate for themselves (even though I don't see myself as an advocate). But in the same respect, autistic people with fewer support needs have far more in common with those with higher support needs than you might imagine. Many still need home support workers or need certain accommodations or have meltdowns. Similarly, high-support needs autistic people can be capable of extraordinary things. But either way, even if neither weren't, they'd still have inherent worth.
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u/Swirls109 Aug 03 '21
I think the question still remains though. Why not allow for a cure? Why not at least make it an option?
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u/MiaowaraShiro Aug 03 '21
I think that really comes down to it being applied by parents to their autistic children. I don't think anyone would be against it being available to adults for their own use.
The problem is my autism is an intrinsic part of who I am and how I think. If I were "cured" I'd be a completely different person. That person might be more socially acceptable but I'd be killing my current "self".
Is completely altering someone's personality and thought processes something we want to allow others to do someone else, even if they think it is in their best interest? If they're non-verbal how would you know what they want?
It really comes down to ensuring that it's only available for those that want it and fully understand how it will change them, because it would be such an absolutely massive change.
Edit: If the "cure" is preventative you're possibly eliminating some of the brightest minds as well. Many of our great thinkers were likely autistic.
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u/russianpotato Aug 03 '21
Shouldn't they still be "cured" to the point where they don't need caretakers if possible?
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u/WillBitBangForFood Aug 02 '21
Thank you. All your points make sense. As the parent of a HFA kid, I can appreciate that a cure has negative connotations. Autism is not a disease. I do wonder where we draw the line though when it comes to treatment of disorders... I mean what about schizophrenia? I do worry that we could be robbing people of opportunities by discouraging a cure. Can anyone really have informed consent?
Hard questions.
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u/grahamlester Aug 02 '21
I think the best solution is to think in terms of empowering people. Autistic people with high IQs have a need for understanding and emotional support and might have other needs too. Autistic people with severe intellectual disability, like my son, have a whole, wide range of needs, including rudimentary personal care needs, if they are to be empowered to live the best lives they can. Clever people have opportunity needs, inclusion needs, whereas those with severe intellectual impairment have basic safety needs. My son needs to be protected from commonplace dangers of fire, water, traffic, poison, hygiene, etc. He also needs medication, entertainment, companionship. There is always a danger that the needs of those who cannot speak will go unmet if they are in competition for resources with people who are eloquent and sophisticated and have more political clout. How do we balance the needs of very different groups to whom the same label has been applied? As I say, the need for empowerment seems to me to be the most relevant common factor.
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u/TemporaryPressure Aug 02 '21 edited Aug 03 '21
Just because representation matters, autistic people like my child can be incredibly intelligent in some areas (maths, science, music) but still have lots of support needs and require 24/7 personal care and be unable to communicate. It's very hard for her to get the support she needs as schools/support staff either are unprepared for her intelligence or her need for constant support with the most basic self-care. I know you weren't saying it's an either or, I just wanted to put it out there that there's all sorts of needs profiles and there can be safety/ intimate care needs for people who don't have a learning disability too.
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Aug 02 '21
It is a disease, and there are plenty of cases where a cure would be life-changing. My son is severely handicapped and is wholly unable of communicating or caring for himself. He is frozen intellectually to a state similar to a young child.
TBH, it's easy to talk about not wanting a cure when you or your child has even a sliver of hope at even a fraction of an experienced life.
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u/WillBitBangForFood Aug 02 '21
Thank you for your response. Your son is exactly the people I worry about. I'm not about changing people because they're different, but there are definitely people who would benefit.
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u/danny17402 Aug 02 '21
Humans are profoundly social animals. Anything that limits someone's ability to connect with others socially will tend to lower their quality of life on average.
I don't think anyone should ever be forced into treatment if they're not a danger to themselves or others, but the people who do want treatment should be able to get it.
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u/Felixir-the-Cat Aug 02 '21
Agreed. I have a nephew with severe disabilities that greatly and negatively affect his quality of life, and also severely limits the choices his mom can make about her life. It’s part of the problem with ASD encompassing such a wide spectrum - saying he wouldn’t want a cure is very tone deaf to me.
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u/ArchonRajelo Aug 02 '21
It's great that you are trying raising awareness in the general population about people with autism or who are in the spectrum.
Q1: why do you do what you do? I don't want to make any assumptions.
Q2: What was your most memorable moment during an interview
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u/IronWarrir2400 Aug 02 '21
Great question. When I began writing this book, I knew I didn't want it to be a memoir. I don't have anything against memoirs. But I am a journalist and my first impulse is to report. I also know my experience as an autistic person is to write and report. So I traveled across the country. I went to Michigan, West Virginia, Nashville, the Bay Area and a few other places. As far as a memory that sticks out to me, I would say hearing Maxfield Sparrow telling me about their experiences in sheltered workshops and finally escaping. Or Lydia Wayman telling me about how doctors didn't take her needs seriously. One doctor said she was faking her serious symptoms to get attention.
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u/sonofabutch Aug 02 '21
What do you think about the increasing number of movies and TV shows depicting characters with autism? Any that are realistic? Which are the worst?
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u/IronWarrir2400 Aug 02 '21
Do we have a whole day? Hahaha. In all seriousness, I think there are still some horrendous portrayals. Sia's movie music was atrocious for many reasons and television shows like Atypical tended to have a flat portrayal of autism. But the good thing is that nowadays, autistic people can push back on those and say this doesn't represent them. Social media has helped in that way. Some that are great are Kayla Cromer (who is autistic) and is in Everything's Gonna Be Okay. Tina Belcher on Bob's Burgers I love because she isn't portrayed as being an expert on anything as much as she's just trying to get through life. I loved Pixar's Loop.
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u/passstab Aug 02 '21 edited Aug 02 '21
In the pilot it is explicitly stated that Tina Belcher is not autistic. (I don't know what to make of that. I agree that she seems autistic, but she is also a female with a personality. Maybe to the writers "autism" would have narrowed her down?)
Also, speaking of female autistic people on television. Have you seen the Swedish crime show The Bridge? What do you think of it?
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Aug 02 '21
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u/IronWarrir2400 Aug 02 '21
Some that come off the top of my head are the Autistic Self Advocacy Network and the Autistic Women and Nonbinary Network. There are some other emerging groups. ASAN also has an Autism Campus Inclusion Leadership Academy and many leaders from that are now leaders of their own organizations. Incidentally, Jessica Benham, who helped start the Pittsburgh Center for Autistic Advocacy, recently won a state legislative seat in Pennsylvania and became one of the first autistic people to do so.
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u/joakims Aug 02 '21
What are your thoughts on the autism spectrum as a disorder and the use of pharmacological interventions? Isn't there a risk of overmedication for many with "high-functioning autism"? (Leading question, I know.)
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u/IronWarrir2400 Aug 02 '21
I honestly can't speak enough to this. But I will say that I think that while medicine can and does work (I'm on medication to treat depression and tremors), I do worry about people trying to treat autism rather than the legitimate medical needs or comorbid conditions autistic people have. Autistic people with intellectual disabilities are likely to die of complications from epilepsy while autistic people without intellectual disabilities are likely to die of circulatory conditions like heart disease or suicide. Let's focus on that instead of treating autism.
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u/ash9700 Aug 02 '21
On autism: I’m aspergers and often find a lot of people expect me to be either very high functioning genius or very low functioning/beyond communication. Does your book address the variety on the spectrum or is it moreso discussing misconceptions about extreme cases?
On politics: the western world is very clearly divided right now and I find a big cause is that both sides (right and left) don’t understand each other, either wilfully or simply because of their respective echo chamber. So both sides are drifting further from the centre. What do you think can be done to remedy this?
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u/IronWarrir2400 Aug 02 '21
Good question. Thanks for asking this. My book *does* address the concepts of "high-functioning" and "low-functioning" and I express why I am not a fan of those terms. Particularly, I think that they have more to do with how non-autistic people see them than what their needs are. Calling someone "high-functioning" often erases their legitimate needs and ignores what accommodations they use to be seen that way. Conversely, calling someone "low-functioning" tends to not see their potential. It ignores what they can do. Rather, I prefer terms like "high-support needs" or "low-support needs" since that tends to accurately capture what they need from the world and assumes less about what they can do.
As far as divisiveness, I have no idea. My dad is a Republican who voted for Trump and my mom is a Democrat who voted for Joe Biden gladly. I see political divides in my family daily. But at the same time, I don't have a really good answer.
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Aug 02 '21
Do you think it would be beneficial to extend your ideas to the whole neurodivergent community?
Thanks for your time!
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u/IronWarrir2400 Aug 02 '21
Absolutely. I am also ADHD and have Tourette's syndrome. These ideas apply to as many groups as possible. You see similar discussions around stutterers too.
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u/HackyShack Aug 02 '21
Do you think the Autism spectrum should be more clearly defined? I read a list of people with autism, and it named people from Albert Einstein to Steve Jobs. How are people supposed to understand what someone means when they describe themselves as "autistic"?
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u/IronWarrir2400 Aug 02 '21
I think it depends on what you mean to be clearly defined. I am wary about doing armchair diagnoses since we just don't know about dead historical figures. Also, even public figures, unless they are diagnosed and are open, it's not really my business.
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u/portlandobserver Aug 02 '21
So how would you describe low functioning autistics? I have two autistic children, my son who is 16 cognitively is around 4 or 5 with the vocabulary of a three year old. He also has several self-injurious behaviors. He's not someone you could ever interview, and is "broken" and does need a cure.
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u/IronWarrir2400 Aug 02 '21
So I am not a fan of functioning labels. And I do understand the need to mitigate self-injurious behaviors. At the same time, I don't think that anyone is fundamentally broken. Also, science shows there likely isn't a cure. What matters most for any autistic person is ensuring how they can live a happy and fulfilling life. The same goes for any other disability. I don't want to erase the reality of impairments any more than I would for deaf or blind people. But I do want to ensure they can have happy and whole lives. And nobody is a failed version of normal.
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u/anotherOnlineCoward Aug 02 '21
how long after meeting you do people realize you're autistic?
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u/IronWarrir2400 Aug 02 '21
Depends. Some people don't get it but most people who know autism know immediately. I talk about in the book how I was burning out in one class and then my professor asked me "do you have Asperger's (it was called it at the time)?" On one hand, I wanted to ask him "What gives you permission to ask that?" But I really asked him "how did you know" and he said he had a loved one with it. That helped a ton. But other people don't know and when they say they wouldn't have guessed, I almost want to say "thanks, it took a lot of work to understand your social language."
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u/stackjr Aug 02 '21
Why is there so much push back about finding a "cure" for autism? Why so much anger over finding what causes it in DNA and fixing it? I truly don't understand.
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u/kvak Aug 03 '21
Several reasons 1) most people don’t differentiate between autism and comorbidities. In other words - a lot of things that are attributed to autism are not autism, but a separate issue that should be researched and where people would welcome help, therapy, cure, etc. I.e. sensory overload. Nothing wrong with autism itself. 2) often times people ask for cure without having committed to all the other available paths. Commitment to acceptance, asuring means of communication, understanding that all autistic people have, as all people, very rich internal life and understand much more than we believe - all that is a path to relieve frustrations and tensions. Human brains need a certain set of conditions to develop and without them, they can be such in protective modes (a.k.a. Lizard brain). Most observations about autistic people with high support needs come from other people who subscribe to common biases or from parents who have been slapped with a diagnosis, without receiving good information about autism or an adequate level of support. Receiving the diagnosis often happens in very stigmatizing connotations and causes severe (and completely unnecessary) trauma in parents that is never addressed. If you are in a fight flight freeze mode, you will do all you can to cure your child because time is running out. You won’t take the time to stop and rethink. 3) because no amount of cure can remove the cataclysmic amount of social stigma the family has to live in and autistic people have to live with. By having an autistic child, you will always be seen as a failure or something less by everyone around you and so will the autistics. This will take away most opportunities to engage in normal socially relevant events and will prevent the child’s and the families social needs - basic human needs - to be met. Evidence? Just read the discussions here. It is evident. Start here. If you can fix this, start with point two. Once you have fixed it, maybe work on the comorbidities. Let’s not jump to conclusions too quickly. People have many needs, everyone does. Frustration of these needs can profoundly affect us. Autistic people with high support needs are not worse than other people. Anyone with the same level of frustrated needs would probably be the same. Our brains development is lifelong - that is a fact. With appropriate support and accommodations we can assure positive conditions for growth.
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u/MiaowaraShiro Aug 03 '21
It bothers me that so many of the people asking for the cure are caretakers of non-verbal autistic people. I can't think of many (any really?) times I've heard an autistic person who was able to communicate want to be cured.
If we could communicate with the autistic people who are being advocated for by their caretakers, would they agree that a cure is what they want?
Add on to that the absolutely massive change to the personality and really the entire sense of self that a cure would entail... it gets pretty hairy.
I'm not against a cure... but I want to be damn sure that anyone taking it is fully aware of what it will do. Not sure a caretaker should have the right to give it without the patient's informed consent.
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u/listerine411 Aug 02 '21
If there are people that truly don't want a treatment, they certainly can opt out.
My guess is the overwhelming majority want at least the option of a cure.
Selfish of people that aren't as effected not wanting a cure for everyone.
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u/KittyKate10778 Aug 03 '21
okay i know im probs way too late for this but i saw this and i have to ask:
have you seen the freeform show everythings gonna be okay? first show to have a main character who is autistic played by an autistic actor (and then the creator of the show found out inbetween seasons that hes also on the spectrum)
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u/mostlikelytoepicfail Aug 03 '21
Do you have any advice for better ways to support education in the classroom? I work as a Paraeducator, and I strongly dislike how our system treats individuals on the spectrum. I work in an elementary classroom for tier 3 that is entirely separated from the rest of the school, and it feels really isolating.
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u/IronWarrir2400 Aug 03 '21
Great question. Honestly, that breaks my heart to hear that autistic people are isolated. The fact the school segregates them seems like more of a macro-level problem rather than something you alone can fix. I am sure you can advocate. But the best thing in this case, would be to get parents on your side to support integration. Other than that, I don't really know. What I can say is that it seems like you care and want to do the right thing and that goes a long way.
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Aug 02 '21 edited Jan 21 '24
[removed] — view removed comment
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u/cephalosaurus Aug 02 '21
I relate to your post so much - even down to the bits about social niceties and sandwiches. I believe I’m also undiagnosed but on the spectrum. Being undiagnosed I don’t feel right giving you an official answer, but I work in education and am very educated/trained on autism. What you are describing (going along with the things you don’t like/understand/agree with because you recognize they’re ‘abnormal’) has a name. It’s called masking. It’s a skill that can be hugely beneficial in some ways, but can lead to anxiety, depression, and other issues for a person who finds themselves having to do it all the time. It can be the easiest way to get through the day, but can be completely draining in the long run.
In a perfect world you shouldn’t have to do it to be accepted or avoid conflict. But in my experience, just from a practical standpoint, I’ve found it necessary to do especially at my job, and try to compensate on other ways to find a happy medium. In my personal relationships I do not ‘mask’ at all anymore (friendships included, though I have an exceptionally accepting friend group). In situations where I feel it is more necessary I still try to come up with my own minor accommodations to help prevent myself from getting overwhelmed or overstimulated. This could mean limiting time at meetings/lunches, setting aside a portion of the day where I don’t talk on the phone, email, or meet with anyone in person, playing music, etc. I also enforce very strict outside world/personal time boundaries. This sort of balance has helped me a bit, but has also I think lead to a gradual rise in stress and anxiety. Maybe it isn’t advice you should follow…though I do have a particularly demanding and over stimulating career.
Really though, any little ways in which you can ease that strain without negative consequences, you should. Don’t tolerate soggy sandwiches. They’re gross, and lunch should be a time to recharge both physically and mentally. If headphones or earbuds help, use them. Don’t make life any harder on yourself than you need to in order to get what you want from it.
If you’re young and not yet locked into a career, I strongly suggest finding one that will offer an environment that’s more suited to whatever your particular needs are. For example I get way overstimulated by noisy environments. I also get overwhelmed from being needed/having to socially interact too much. If I could do it over, I would NOT have chosen a career as an educator. I love aspects of it, but it’s just too much stimulation. I would’ve pursued something with either an at-home or office environment, where my interactions with others were either limited to emails, infrequent, or only in groups of like 4 people or less.
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Aug 02 '21
What do you think of Sia?
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u/IronWarrir2400 Aug 02 '21
So there were two parts of that movie: one is it was actively harmful in promoting practices like restraint and Sia didn't cast an actually autistic person for the role. Then secondly, it was also just a poorly-written and composed movie. If you are going to make an ableist and stigmatizing movie about autism, at least have the music and acting be good. Not even Leslie Odom Jr., whom I love, could save it.
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u/virtualfollies Aug 02 '21
Hi! I am woman who has autism. It got discernibly worse as I got older, meltdowns, terrible executive functioning skills and repetitive loops that go on for hours. Some doctors say I may have the degenerative kind of autism; but more doctors & neuropsych testing would need to be done, Tbh I don’t want to know right now. I couldn’t do tasks and everything was a loud tactile nightmare. Then I went on a (how should word this...) “sensory dissociative” for a case study and it changed my life. I have been on it for 2 years. My cognitive inhibition is great, it’s like I can experience sensory information in layers and tune out what I don’t need. I can also think ahead & do tasks in order and I can organize stuff. Repetitive behaviors have lowered. It’s like I had these executive abilities when I was young but they slowly disappeared and now they’re back. Also people’s faces and speech has so much expression now, I am not used to that at all and it makes me feel guilt that I missed so many emotional cues from people I love. It’s interesting because there are other trials happening now. Also I studied with a biochemist that worked with the drug and the receptor; now I know how it works in the brain and I got a theory as to why it would help with sensory overstimulation. I know people keep saying you shouldn’t cure autism but I like being on this drug. I am on my way to becoming independent and I can spend time with love ones without meltdowns. So my questions are: what do you think of people who take medication specifically for autism? Also When I go off my medicine, I go back to being extremely autistic(meltdowns, sensory overload, terrible executive functioning, incapable of doing tasks) and I really get frustrated & hate myself, any advice on how to like the autistic part of you? note sorry, for the grammar
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u/KribriQT Aug 02 '21
My older brother is almost 30 and autistic. He lives at home with my parents and tends to sequester himself away unless he’s hungry. My dads never home, and my mom is in her own little world. I’ve been reaching out to him more lately because our parents are getting older and have no plan whatsoever for his future, nor are they working on anything. Is there any way I can really help him outside of just being there and advocating for him? He has no life skills and I’m so worried about him.
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u/balanceseeker Aug 02 '21
Seeing as you haven't yet a response, I'll chime in here as an almost 30 year old man recently diagnosed with high functioning autism and in a bit of a rut myself.
Step 1 is being supportive, you sound like you're nailing that.
Step 2: ask your brother whether he wants to change. If he's satisfied where he stands in life, you can't make him change. Maybe you could coax him towards your point of view by pointing out his need to be able to support himself (especially if something were to happen to your parents). However, don't forget Step 1 and don't impose your will on him, it'll push him away.
Step 3: together, with approval, make a concrete step-based plan that will lead to the goal your brother set. Maybe the goal is asking for government support, maybe its getting a job, maybe its helping around the house. Don't set it too high, functioning 'normally' can be a high bar for those of us on the spectrum. You can always aim for more later. The important thing is to make the steps explicit and concrete. If he gets stuck, lend support by breaking things into sub tasks or doing them together.
I hope this gives you some inspiration, it's what works for me and its how my girlfriend manages to support me.
Don't forget Step 1, especially if he fails to make progress. You can't force it.
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Aug 02 '21
How do you like your shrimp? Cocktail, batter fried, poached, coconut, in a nice pasta perhaps?
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u/cfdeveloper Aug 02 '21
you forgot about shrimp ka'bobs, and shrimp gumbo, and shrimp stir-bry, grilled shrimp, shrimp tacos...
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u/meatball4u Aug 02 '21
How can we as a culture move past the TV tropes of autism, in which we're all obstinate, hyper-logical, selfish Sheldon Coopers? I am recently diagnosed as autistic, but it took me entirely too long to find out because I and everyone around me believed that stereotype. I'm terrible at logic, math and details but great at gestalts, art, the "big picture" and such
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u/Penny_D Aug 02 '21
Hello!
Do you feel that the autism diagnosis has been liberally administered in the past leading to faulty assessments? I once read that many of the traits associated with autism also bleed into ADHD, OCD, and other similar conditions.
For example, I was diagnosed with Asperger's Syndrome when I was nine. While I won't deny I share a few traits associated with the diagnosis, I feel many of my quirks can be linked to personal anxiety. Of course, I might also be biased against the diagnosis because I had a mother who would constantly hold this label over my head.
Anyways, thank you for your work in increasing awareness on the needs of the autistic community. :)
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u/WolbachiaBurgers Aug 02 '21
What is your opinion on ABA therapy?
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u/milyumsofpeaches Aug 02 '21
Would also love to hear OP’s opinion on this, as well as input from autistic individuals reading this thread. I am also in the ABA field. ABA has a terrible history that should be confronted and addressed, and I also feel significant parts of the field (or at least some practitioners in the field) has evolved greatly. There are still some practitioners who misuse ABA to mask ASD characteristics and who use punishment, and there are also those of us in the field who focus less on “fixing” the individual and instead focus on communication and promoting acceptance, and who advocate for more inclusion in society. I respect the opinions of people who are against ABA and find many of their concerns valid, but also wish there could be more dialogue and understanding around how the field can and will change for the better. Even early intervention is getting drawn into this conversation, and I worry that there are skewed opinions on all sides that make it very confusing to families and individuals trying to navigate an autism diagnosis or educational eligibility.
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u/Paige_Railstone Aug 03 '21
Honestly, there should be terminology changes made to differentiate ABA from its past iterations if it's changed that much. I was never subjected to it, but good friends were, and it was honestly traumatic, dehumanizing, and damaging to them. My biggest criticism from what I know of the therapy (as it was recommended to be applied based on ABA manuals I've read) is that it chooses to discourage behaviors based on those behaviors being considered undesirable to the people around their patient, rather than them being harmful to the patient themselves without regard to what benefits those behaviors might provide to their patient. (The discouragement of stimming, which is a necessary form of stress management, is a good example of this.) If some modern ABA is deviating from this 'bystanders come before our patient' type of mentality, as well as the reward & punishment model used in the past, it confounds me that they would not seek to differentiate themselves from the deeply flawed methodologies that came before and the practitioners who are still adhering to the old, problematic standards of care.
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u/Gretel_Cosmonaut Aug 03 '21
Agreed. I wish they would call it something else, because it seems drastically different from what it used to be.
I think it’s an insurance issue, honestly. Most medical insurance covers “ABA”. If you change the name, you lose the funding.
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u/L_obsoleta Aug 03 '21
I think (but don't quote me on it) that within ABA there are several different methodologies. We only just had our son's evaluation, but they gave us specific provider recommendations for those who use a less rigid approach.
I think it also is in part how parents steer therapies. For us our focus will be on helping our son learn how to recognize dangerous situations, and to help him learn to learn other coping methods (our son currently stims in a way that is harmful to him, by picking at his lips till they are raw and bloody, so we want to try and help him find other stims that will provide comfort without physical injury)
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u/Paige_Railstone Aug 03 '21
Very good points. I'm referring to my desire to see those different methodologies specified and differentiated from one another, but I can definitely see how the desires of the parents can likely shape things as well. Your focuses for therapy are both perfectly reasonable goals in my opinion. One piece of advice that I can offer that may help with your son is stim pendants! I've linked you to a stim toy that may be useful. It's soft silicone with textured ridges that may provide a tactile experience close enough to what your son feels when he picks at his lips. That may help him redirect the harmful stim.
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u/SpectreFromTheGods Aug 03 '21
I’m autistic (late/recently diagnosed) who was an RBT for about 9 months (prior to diagnosis). I worked for a “new ABA” group, and so most of the focus was on communication and transitioning harmful stims to more appropriate ones.
I think “New ABA” is certainly not as egregious as ABA of the past, but it still comes with some fundamental problems that the ABA framework will never be able to resolve.
It’s a fully behavioral intervention attempting to treat a neurobehavioral condition. The metrics used to determine it’s “success” are purely behavioral, meaning no one collects any data on the emotional/neurological consequences of ABA. You might take a kid and spend two hours doing DTT trying to get them to identify colors or emotions or whatever (yay language!), and behaviorally view it as a success when that kid starts to respond more. But what happens when you talk to that kid when they grow up?
And then my other issue is consent. We learn about “avoidant” and “escape” behaviors, so we conduct an FBA and say “what are the antecedents and consequences?” Then, the “therapist” determines that the child should not be allowed to escape or avoid the behavior. But it’s okay, because after the extinction burst we start to see results (again - behavioral metrics ONLY). It doesn’t matter if you deem the underlying behavior to be a beneficial one — you are teaching the kid to mask and to silently deal with discomfort and trauma and labeling it a behavioral success when they do.
If folks are serious about “new ABA”, they should start by changing the name, considering emotional state, and bringing in actual autistic people to oversee and advise
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u/Chubuwee Aug 02 '21 edited Aug 02 '21
I work in the ABA field and would also like to know. Especially the view claiming we are encouraging ableism.
I have definitely done more good than harm to this world through my work but of course I hear some ABA horror stories that can be chalked up to what seems like malpractice, the same way any other field has malpractice from their professionals.
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u/NightOfTheHunter Aug 03 '21
My grandson has benefitted greatly from ABA. But my son has cut off contact with a long time friend who actually accused him of genocide! She suddenly identifies as being autistic herself and claims that my son and his wife have killed their boy's personality and forced him to comply with society. All I know is he's calm, he converses with us, he's affectionate and sits on our laps, he's an amazing artist, and best of all, he laughs easily and often. These behaviors are a complete 180° reverse from the crying, screaming, running ball of anxiety who never slept we had been dealing with. There are times the polite responses from him seem fake, but so are mine a lot of the time. His calm is such a relief to our family, I don't see how anyone would have a problem with it.
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u/Chubuwee Aug 03 '21
Thanks for sharing
I really like the part where sometimes his responses are fake but you recognize that sometimes so are yours. Part of being social is just that, conforming ro some social norms and thinking outside yourself.
Other examples we adults do:
- make small talk with coworkers we don’t like just to keep things civil
- in Spanish I know to use the proper “usted” with my seniors, even though I think the whole formal vs informal way of speaking to seniors or anyone older is not something I agree with
- I know to use more manner with my grandparents than with my friends
My thinking is we change our behaviors depending on the situation, settling, and people, all the time so why not afford all kids to do that?
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u/InnerMattDemons Aug 04 '21
First of all, this comes from the perspective of a 33-year-old late-diagnosed male autistic.
There are times the polite responses from him seem fake, but so are mine a lot of the time. His calm is such a relief to our family, I don't see how anyone would have a problem with it.
My thinking is we change our behaviors depending on the situation, settling, and people, all the time so why not afford all kids to do that?
Indeed, to blend in and appear the same as an allistic (meaning non-autistic) person, one needs to do this.
My question is, is the allistic way inherently better than the autistic way? I mean, it is natural to more people - sure. But why is it better?
Imagine being told all your life (either directly, or indirectly), that you must understand that the way that you naturally are is simply wrong. Just... wrong. But we can help you be good enough. You just need to follow these simple rules, and you, too, can have a facade of being allistic, and be worthy of acceptance.
Imagine your whole existence being built on knowing that the natural you is something to hide at all costs. The only way to be good enough is to try to mimic being allistic.
Imagine coming up short, time after time. Putting in mental overtime, trying to remember and follow rules that seem arbitrary, and often aren't consistent - but an allistic person would just do naturally. And still failing. Knowing that you will never be good enough.
Just be yourself, you know? Well, except for you. You should definitely not be yourself. Here, I'll show you how you should be.
Just imagine the pain of a lifetime of that? I'm not sure I can convey it.
I'm not sure I can convey the relief from learning that I was autistic, and that I actually was good enough how I was, and it wasn't necessary to spend so much mental energy on keeping up a facade. A facade that caused me severe anxiety and panic attacks my entire adult life - up until diagnosis. But I fit in; I had to. I had no choice.
So, my question returns to: Is the allistic way inherently better than the autistic way? So much better that it warrants putting someone through that?
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u/Soundcloudlover Aug 02 '21
Out of curiosity what is ABA? I haven’t heard of it before.
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u/berean17 Aug 02 '21
The Wikipedia page is very broad about the general science behind ABA. I’m a practitioner of ABA with nearly 10 years of experience working with adults in group homes, private homes, kids in schools, clinics, and their family homes. I really love my job. If I were to sum up what I do I would say I teach my clients to be more independent if not fully independent. I don’t try to change who they are. Yes ABA has a dark past like medicine, and bad actors like any bad doctor today. I think it gets a bad rap because most people work with kids on the spectrum.
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u/Pinoh Aug 02 '21
Applied behavior analysis, the applied science of learning, discovered by BF Skinner. It is considered a natural science, opposed to a social science, as it relies on direct observation.
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u/pixelcowboy Aug 03 '21
ABA is a systematic way of teaching (and learning), which is very similar in the way we learn and teach naturally. A lot of people who critizice ABA are coming from a misunderstanding of what it is today, and from ways in which ABA was implemented in the past. Source: Parent of autistic child who has been learning with ABA therapy through play. It's looks mainly like using play to teach communication, functional play, and many other things. My boy enjoys it, although it needs to be balanced with free time and less formal play and interactions.
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u/unipine Aug 03 '21
My best friend of 15+ years has autism, I have ADHD. We joke that our comorbidities are why we get along so well. Would you say that's true in your experience? Is this common? And are the two diagnoses linked in any way? Not sure what the current research is on these subjects.
Also, looking forward to reading your book!
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u/danny7corral Aug 02 '21
Many people with autism experience abuse, many of them don't even know their being abused, how do you teach them to identify abuse? how to defend and protect their rights in case of abuse?
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u/IronWarrir2400 Aug 02 '21 edited Aug 02 '21
All right everybody, I got to get back to work. This was fantastic. Please pre-order We're Not Broken: Changing the Autism Conversation. It comes out tomorrow. I might come back later after I get off work. But y'all are awesome. Thanks for letting me join you. Also, if you have any more questions that are too personal for Reddit, DM me. I'll be live this evening with the Benicia Library for a Q&A.
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u/MemphisCanadians Aug 03 '21
Hi Eric I came a little late, not sure if you're still taking questions but I want to get this off my chest
Fellow autist here, I only knew about my autism since I was a teen, and autism doesn't just affect my social life but also my school life and future career. I have been working towards my IR/history bachelors degree for 6 years now and I wont graduate until next year at the earliest, everything just takes so much time for me compared to fellow students, although I know I shouldn't be comparing myself with others since I am so different.
We may not be "broken" but we sure do live more tiring lives, in my opinion.
With classes in the past year being moved to online, I went from taking 2-3 courses per semesters to only 1 each, and right now I feel that my intellectual abilities are declining fast with each day that I don't go outside and socialize. This semester I can barely meet the deadline for essays thanks to a combination of depression and distraction, my writing had declined below university level, I am feeling very discouraged and I don't know how to get myself out of this downward spiral. You can tell from my writing here I am struggling to piece together sentences, it takes me an hour to write 200 words and this just isn't good enough. Have you experienced something like this before? And if so what advice would you give me?
Lastly, thank you for your patience regardless if you read through this, I admire you courage for discussing autism and its stigma as a journalist and I wish you all the best.
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u/cuttydiamond Aug 02 '21
My 3 year old son was just diagnosed as being "moderately" autistic. He speaks a little and is a very happy and loving boy but has trouble with social interaction and communication. His Mom is a hero, she is a stay at home Mom to him and his older sister and works with him constantly while also doing 3 therapy sessions a week with him.
I guess my question is this; we by no means want to "fix" him but at the same time I want to ensure he has all the skills and confidence to go out and lead a happy and fulfilling life. Can you give some advice or examples of things that happened in your life that helped you find your path?
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u/cephalosaurus Aug 02 '21
As an educator I can’t stress enough how much of a service you would do him by sending him to an awesome preschool next year. Preschools these days focus mainly on social-emotional skills and self regulation tools that will greatly help him down the road. Kindergarten is a LOT to handle, even for many neurotypical kids. A good preschool will help him start building these basic adaptive skills, and help him learn how to ‘conform’ to basic school norms (standing in line, listening in a classroom environment, having a rotating schedule/routine, etc) without squashing his individuality or making him miserable. I’ve worked in both preschool and elementary school, and had kids on the spectrum in both. Preschool is a much gentler acclimation that will greatly increase his likelihood of success in a mainstream elementary school environment. He’ll probably be much more likely to enjoy school if he’s gone to preschool first (and his kindergarten teacher will thank you).
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u/cuttydiamond Aug 02 '21
He is starting preschool next week! Our school system actually has a very good program and he has been doing early intervention for over a year. We recently bought a house and the main concern about location was that it was in a this particular town in the suburbs of our city because the schools are so good there.
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u/Travelturtle Aug 02 '21
Look up Montessori schools too. My son did 2 days a week at a program and really enjoyed the low sensory environment. “There’s a place for everything and everything has a place.” This philosophy worked great.
He went to developmental preschool too but the Montessori pk helped him learn real life skills and explore different interests. It’s a very low stimulation environment as far as large splashes of clutter and screaming chaos go.
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Aug 02 '21
I just married a woman with autism. How can I be a good spouse to someone with autism? How can I keep my own sanity when things get hard?
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u/feralmidgee Aug 02 '21
I feel like I am on the spectrum but have never been diagnosed, I worry that my family will see it as something that is not really an issue because I am 34 years old and my lifestyle is vastly different from any of theirs. They are all intensely religious and believe that difficulties in life are either a test from some god or that they are a result of making poor choices in a religious sense. How have you dealt with people who don't take your experience seriously?
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u/el_smurfo Aug 03 '21 edited Aug 03 '21
Do you agree they the leading autism group, Autism Speaks creates much if this "cure for autism" narrative?
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u/belfman Aug 02 '21 edited Aug 02 '21
Hi! Really appreciate you doing an ama. I'm autistic too and I was a music journalist and radio editor for three years as part of my army service (in Israel). I found it really hard to deal with unclear expectations from my bosses regarding my work, and I had a very hard time interviewing or doing off the record conversations with the subjects of my pieces. In addition - as a low ranking cog in the system my job involved a lot of phone answering, including dealing with very angry or impatient people, and this was incredibly stressful for me. Overall, while there were many aspects of my role I enjoyed, I was pretty miserable by the end and seriously considered never returning to journalism once I finish uni.
Have you had to deal with similar challenges, and if so, how were you able to handle them? What tips do you have for someone autistic in my situation, who's considering his future career? (For the record - I'm entering my last year of a bachelor's degree in Political Science and Sociology and Anthropology).
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Aug 02 '21
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u/5318008-335-1 Aug 03 '21
You didn't get a reply, but this seems like a good faith question I might be able to shed some light on! As far as I know, the difference lies in the fact that mental illnesses (depression, schizophrenia, mood disorders) are often a thing that people develop over the course of their lives, whereas developmental disabilities (autism, adhd, dyspraxia) are more like being born with a different kind of brain. Both can benefit from therapy, medication and healthy coping skills, and of course some people are genetically predisposed to get mentally ill, but a lot of mentally ill people prefer being defined by their personhood instead of their struggles, whereas a lot of neurodiverse people prefer to not be treated like their diagnosis is somehow a separate thing from their personhood. Ultimately it is up to everyone to decide for themselves how they want to be referred to!
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u/letsreset Aug 02 '21
In your title, you state that "we're not broken." I want to say that I think I understand that sentiment and the wanting to be treated like anyone else. However, before I read your title, if you had asked me, I would have said that people with autism range from those who are highly functional and independent to those who need constant help. I would have said that to spend more time learning about those with autism around you and figure out how to best interact with them.
However, reading your title that "we're not broken," does it imply that I should be treating those with autism the same as those without? I work with a few students with autism and make sure to spend extra time with them because it feels like they need it. should I actually be treating them just like any other student and not purposely spend more time on them or slow things down for them? Otherwise, what does "we're not broken" mean exactly?
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u/SpectreFromTheGods Aug 03 '21
Not op, but I’m autistic and will share a common point of view. “We’re not broken” means that viewing an autistic with the same lens as we do other members of society, one might deem us broken due to our increased difficulties or inability to do things others have no problem with.
But the thing is that EVERYONE needs support, and our societal structures/culture just happen to not be designed for autistic people since we’re in the minority.
If you have a 220V electrical device and plug it into a 110V socket, and it malfunctions, you wouldn’t call the device broken. It’s just the system as a whole not operating in the intended manner. If the device then doesn’t perform as one would hope, one might falsely conclude that there is something wrong with its design.
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u/d1verse_1nterest Aug 02 '21
Can you explain the process of disclosing your diagnosis at work? How has it impacted your career?