And while I can not rattle off every type of train ever built, I have my own lists: World Series results, stations on the New York Subway, crews of the US Mercury, Gemini, and Apollo missions.
And I like the cartoon showing the difference between the stereotypical autistic person and the reality.
Me, as well! And, like you, Kiwiwriter47, I can rattle off most of the crews of Mercury, Gemini, and Apollo missions, along with the first seven Space Shuttle crews. I remember the dates of BOTH the Challenger disaster (Tuesday, January 28, 1986; 11:38 EST) and the Columbia disaster (Saturday, February 1, 2003, 8:59 EST--BIG space geek here).
I'm not as huge a space geek, and I lost track of the crews and other information after the Space Shuttle started flying -- there were so many missions -- but I am very impressed.
And you know how Asperger's, except for memorization and strong work ethic, is a living hell.
Philámayaye (thank you in Lakȟótiyapi). The biggest benefit of my diagnosis was finally finding commonality for all of my reactions and behaviors that were always labeled as being just a weird quirk only I had.
Recently self-identified (and clinically supported, if not “diagnosed”) at 42, after running into an absolute brick wall of burnout at the end of last year. Understanding myself much more fully, now. The autism and neurodivergence community is no question the best thing about the internet, in my view.
What comes to my mind reading this insightful piece by Amelia is the Myth of Normal. We make ourselves sick by assuming what normal is rather than embracing our differences as the healthy norm. As a child I was labelled with attention deficit disorder when in reality I only attended to the world differently. As an adult that difference is paying dividends as I write about how I attended to the world went against the cookie cutter order imposed upon me by school as a student. School had separated subjects that were inseparable to my mind. I was busy making connections that went against our order of things to see the bigger connected picture.
Indeed, when you put together all the stats of different groups who "aren't normal", I ask, as I have elsewhere, has it become abnormal to be "normal"??? If diversity outnumbers "normal" then isn't it well past time to stop separating people as "different" according to a minority measuring stick?
Exactly, Republicans fear- resent the fact that America is becoming a nation where minorities are becoming the majority...it sucks to be an illiberal white fantasizing about the good old days of the good old boys. Trumpism is all about resenting progressive change....diversity.
Later it was determined that I was gifted. I was bored at school. Not suffering from attention disorder at all.. So, I experienced being "special" in both ways negative and positive. Both labels were wrong. I was merely different as my parents were. They modeled lifelong learning, independent thinking skills-organic learning rather than FOLLOWING the standard procedures. School was interrupting my education. At university, in political science I argued we needed to DE- school society so that we are not so schooled to label but to embrace diversity and civics so that we can become a more democratic society. Lack of independent thinking skills and authoritarian personality traits have been measured and documented in FOLLOWERS of Trump.
You are very welcome, Amelia. We need more experience based-insight based reporting like you offer rather than data based-poll based-specialized spins that are deadline based rather than wisdom based. Speed and specialization- meeting deadlines-filling space fast leaves less room for holistic wisdom.
I HATE jokes or really, kidding. "Oh, hey, I was only kidding." I've only told everyone in my life a thousand times I don't get kidding. I don't understand & I think it's cruel. No I won't get over it. Just don't kid with me. Say what you mean & mean what you say, please. I will hardly speak to my brother any more. He won't stop & thinks it's hysterical to upset me. We're 60 & 70 yo. We're both on the spectrum.
👏👏👏 I have a sense of humour, I "get" genuine jokes, but I too find "kidding" to actually be a form of bullying if people know you don't like it but they continue. I especially hate seeing it be done to other people & often intervene to support the one being attacked & hurt to let them know I understand & support them. But I wish people who say they care about someone would just take them at their word & stop eh?
My culture is very much about joking with each other, but it's always with each other and more often self-deprecating.
I can't stand the poking and prodding some people do for the sole purpose of upsetting someone that they mislabel as "just kidding around." Yeah, no, that's bullying.
I have several of these "symptoms". I "hear" too much. I was hyperactive in early years so I was put in dance and tumbling. I pause when speaking to "find" the word that fits. I am hypersensitive to spices. I hear music of any kind first before vocal sound so I have a hard time in venues with background music when I am supposed to carry on a conversation. All my life. A couple of other "things". I never considered it was autism. I just thought everyone else had their own different problems.
THANK YOU! What an informative and thoughtful article. I learned a lot from this. I’m not on the spectrum but have friends that are. Your experience and explanations I believe will make me a more informed, understanding person going forward. Thank you so much for sharing. 💜
This is wonderful! A lot of these symptoms show up in my husband, myself, and my son as well as my autistic daughter. As it turns out, for philosophical reasons, I was protective of my kids’ autonomy and agency as they were growing up and as I learn more about our brains I am grateful that I let toddlers, preschoolers, and school kids dictate to the family when warranted (I can’t handle the noise at this musical, the height of this restaurant, scratchy clothing, etc.) Even if I didn’t understand everyone’s operating system, I have few regrets because we always treated sensory issues, mental exhaustion, video gaming, as indicating needs, not willfulness.
While attending a conference and seeing a presentation in which the presenter referred to her research participants as "Aspygirls", I checked off nearly every indicater she presented regarding women who'd been misdiagnosed all their lives and have a high probability of being Autistic. I then looked for someone with expertise in late diagnosis of women and got my official diagnois of ASD. That was an enlightening moment that cast an entirely different interpretation of my life's experiences. Interestingly, I am also a behavior analyst, which means I provide applied behavior analytic programs to assist individuals (many autistic) in increasing their independence and addressing any individual needs they or their families have identified. Now, I have to say, that if I had been the recipient of traditional ABA as a child, I would have responded violently to that treatment and likely have been institionalized as a result. However, as a modern and non-traditional behavior analyst, one who is a firm believer in the right of everyone to refuse to be compliant and to be unique and interesting individuals, I provide what is becoming known in our field as "compassionate care". I do not try to mask anyone's individual traits or try to turn an atypical person into a typical person. I wouldn't like it if someone tried to do that to me, so I'm not doing it to them. Applied Behavior Analysis has been going through significant changes largely the result of the feedback recieved from previous recipients of ABA programs. I want to make two comments regarding the statements made in this article about ABA. First, like you mentioned, every autistic person is unique just like every non-autistic person is unique, and we range across a wide spectrum of skill strenghts and skill deficits. What I have observed in autistic adults who have significant skill strengths is a tendency not to recognize that there is a significant population of autistics with significant skill deficits in communication and daily living skills who would have their independence seriously limited without ABA programs to help. I have also observed in my field a tendency for ABA professionals to not recognize the population of autistics who do no have severe skill deficits and therefore do not need any intervention and if they get treatment, it's usually not appropriate. So that is my first comment regarding negative comments about ABA. The other comment is that it's very common for people to speak in absolutes, for example, something is always one way, or never one way. When people use absolutes to refer to the historically and sometimes current traumatic ABA programming, and advocate against it without qualifying what they say, then they are misrepresenting whatever it is they spoke so absolutely about and are in fact engaging in the same behavior they complain about when people refer to them in absolute terms. So my second comment is, as much as we each want to be treated uniquely and recognized for our strenghts and assisted for our weaknesses, we should recognize that we do the same for others autistic and non-autistic, and for programs intended to teach. Let's face it, many public schools and many teachers are terrible in how they teach or respond to kids with autism, but no one is advocating that we end public education for autistics. My personal experiences with the public school both as a student and as an educator have been both positive and negative but I don't advocate for the end of public school because they aren't perfect or had a history of poorly treating individuals with disabilities or autism. However, I frequently see this response by autistics, to advocate against something that is not universally negative and in fact helps so many people. There seems to be no flexibility or recognition that many behavior analysts, including myself, are actually helping people and are not in any way hurting or traumatizing anyone. Just once, I'd like to read an article that provides a balanced view of ABA rather than advocating for or against. Thank you, Wendy Weller, PhD, BCBA-D.
"The puzzle piece organization also advocates the use of a form of Applied Behavior Analysis (ABA), which forces children with autism to mask everything. Its goal is compliance and obedience not focused on the best interests of the autistic individual.
This controversial ABA has been criticized as abusive and traumatic and has negatively impacted the public's perception of all forms of ABA."
ABA isn't inherently bad, but like many forms of therapy or treatment, when the needs of the recipient get discarded for the convenience or comfort of others, the methods and outcome rarely have a positive effect on the patient. Unfortunately the well funded, highly publicized puzzle group has pushed for ABA that caters to caregivers wants at any cost.
I've used ABA at different points in my life to help me attain several of my own goals. I highly recommend it for that purpose.
I've only had one disastrous ABA experience which was a forced one because my school counselor diagnosed me as "weird for a girl" and the administration demanded I get treatment to make me normal. It was worthless mostly because the male analyst had preconceived, immovable prejudices about the intellect and motivations of teenage girls. He kept trying to make me work towards getting a boyfriend and making myself prettier because, isn't that the dream of every teenage girl?
He thought ridicule and humiliation were the only effective ways to get a desired result from females—his actual comments to my Mother, not my perception. Unfortunately for him, I have ASD and was pretty immune to his methods. He refused to treat me any longer after I "made him cry." I got transferred to an extremely effective member from the same office who asked what I wanted.
If ALL of my ABA experiences had been like his version of treatment, I could see branding it worthless.
But I know people whose only ABA experiences were of the puzzle piece organization variety, where physical restraints, forced physical contact and being blasted with sounds and other triggering stimuli to force "desensitization" were the methodology. No one got desensitized—they got traumatized into no longer outwardly reacting. Which was the goal of that organization—compliant, normal looking kids so their family didn't have to be embarrassed or inconvenienced.
Those people are an extremely hard sell on ABA even though there's ample evidence of non-abusive forms of ABA being beneficial to recipients.
I have used ABA on my own child. It helped her to read and to get through shots. Still, overusing it is a problem too. However, part of ABA is fade the rewards as the behavior is adopted. I think everyone who plans treats in for themselves to help them do tasks that they do not want is using ABA. Still, I know everything can be poorly done especially if the person doing it does not understand it. It is supposed to help people achieve goals they want to achieve, but I have also used it for things that I felt were necessary like my daughter getting a treat after a shot. Pediatric dentists do this too. They have a treasure chest. I am so grateful that ours did not offer candies like so many do. I have taught a lot of children assumed to be on the Autism spectrum. I have had a good relationship because I am very direct. This is just part of my German cultural heritage. So, again, there is a bell curve of characteristics and everyone falls somewhere on that curve. Good for you for your self acceptance. It is a rare quality not cultivated in women.
In education, in particular, I have been pleased to see more support for individuals and agency, but there is still way too much focus on obedience. I’m grateful my kids turned out cooperative instead of compliant. As a high tech leader, as a mom, and as an education author and advocate, I have been advocating for supporting each person’s psychological needs of autonomy, mastery, and connection which are crucial for motivation. I combine that with metacognition as the two elements crucial in agency. But in order to support that, teachers need to stope demanding obedience as respect and earn their respect by first offering it to students. I suspect this is why a lot of folks with means are keeping their kids in microschools and nontraditional settings.
I think the demand for compliance from parents and from teachers is in part why ABA ended up running so many compliance programs. Our ethical requirement is that treatment we provide is relevant for the individual, family, and community. Of course, the number one thing we're often asked to do is increae compliance. I explain to stakeholders that I cannot ethically orovide compliance training as it is not in the best interest of any individual to comply with every adult or peer request. Instead, I teach stakeholders that everyone has the right to say no to anything and I try to teach them how to accept that and perhaps start to identify why refusal is occurring and problem solve rather than looking for rote obedience. Not easy, obedience has long been an expectation of children or individuals perceived as unable to make decisions.
Yes! I think this is also why schools are still focused on compliance. But relationships with people are much richer if you are not trying to train them or force them into compliance. I found this to be true when my newborns first nursed and were able to communicate when they were ready to switch sides. My internal experience of interacting with these babies was one of collaboration where my job was literally anything that required coordination, mobility, or anything else they had yet to grow into. Just because a person is not articulate doesn’t mean that their preferences and needs are less important. My soul-searching about values when I was first pregnant led me to prioritizing control-proofing my kids in the sense of immunizing them against controlling people, especially partners. I wanted them to experience the full respect from their parents as normal so that if they ran into controlling individuals they would recognize it and have boundary setting skills. So I always tried to treat them they way I would want them to expect to be treated by their future partners. And had meta-discussions with them about that so they could, when older, consciously make decisions about how and when they wanted boundaries.
My mother was so frustrated with me growing up in the 60s/70s. She thought I was doing all this on purpose. Why, I would say, when I hate attention, would I do things to bring attention to myself?
I’m so thankful that information is now getting out that there are many folks who just simply have a different operating system. Thank you for doing your part to raise awareness and normalize being somewhat different.
Philámayaye (thank you in Lakȟótiyapi). I lucked out with my Mother. Her parenting style meshed well with my aversion to touch. If she had been more physically demonstrative or demanding of affection, I think my childhood would have been drastically different.
Thank you, Amelia, for expanding my understanding. I will be sharing this article with friends and family.
Here’s a possibly related experience from my own life concerning word retrieval, especially proper nouns. My mother would occasionally use the name of the person she was looking at, rather than the name of the person she was speaking about. And as I get older, I find myself struggling to recall people’s names. Not all the time and not people currently in my social circles. Meanwhile, beginning in my 60s, I’ve needed to ask people to speak slower so that I can follow along. When watching John Oliver, I set playback at 85%.
At a certain point, aging is perhaps a time of increased neurodivergence.
I agree. That "hunting for a word" increases as you age (I'm almost 80) but I know the word is THERE. I just have to let my brain sort through the rest of my vocabulary. It's mostly when speaking, but happening more when writing now. When writing I can afford to wait. With speaking, "thingamajig" or "thingy" are some of my go-to words that don't leave me.
I've naturally looked this kind of thing up, and am pretty sure it isn't "senility," just aging.
I've always been rotten with names and faces.
I sympathize completely with neurodiverse people being accepted for who they are. If I want to be accepted as a still "high functioning" 80 year old with word hunting issues, I can't gainsay folks with other similar issues. But I do wonder if they are necessarily as diverse, as to particular traits, as they are filled with CONCENTRATED diverse traits. I wonder if the spectrum extends to ALL human beings, but in very very attenuated forms in "normies."
What you're describing is aphasia which is almost a universal part of aging. It only becomes an issue in sudden onset of severe cases.
Dysphasia is most common among neurodivergent people and remains fairly consistent throughout life. The variations in severity are generally associated with fatigue or reactions to stimuli.
But a person with lifelong dysphasia can also experience aphasia as they age. I'm 54 now, but I haven't noticed my word hunting becoming more common yet.
I too have noticed I listen to books on about 85% speed. I have to use closed caption to watch TV. I'm 61. My family insisted I get hearing aids. Spent a fortune on the best. What a waste of money. I hear fine. It's the understanding part in my brain that has slowed down. I understand half of people just fine. And don't understand fast talkers. I hate to talk on the phone with a passion. I love to text. Unfortunately most people in my life are the opposite. It's so frustrating.
It's more often verbs and descriptors for me. Proper nouns are one of the things I can almost always articulate.
I think that might be related to my autism, though, as there's a tendency to collect specific information. For my Father, it was NASA missions and every ship ever in the United States Navy.
Mine is obscure animals or dog/cat breeds. I can recall a Hyrax looks like an evil twin of a Quokka, but not be able to remember anything other than "Please, dish" when I want someone to hand me the large, red serving dish.
This was very enlightening. Thank you for the courage to write it. I am NOT autistic but I have some of the traits you described so eloquently and share your frustration. Because I'm not autistic, I've been spared abuse but I've seen eyerolls at times. Thank you for this article.
This one post is worth the entire year's subscription price. My 10-year-old grandson has been diagnosed with some form of autism. I'm forwarding this to his parents. I hope it will help them understand and accept him better.
Philámayaye (thank you in Lakȟótiyapi) for your support of our Substack. I've been able to help several friends with autistic children to diagnose issues their primary care physicians are struggling with. Autistic adolescents and adults can be great resources for parents.
Amelia this is a very interesting piece. I love learning new things. When I first learned about autism, was around the time that Dr. Temple Grandin was being discussed in the media. Her self awareness helped to develop understanding for Autism. When I studied school psychology we learned that spectrum meant that everyone was on the bell curve of the behaviors, which means we all have some. So, we were taught that the point at which autism is diagnosed is when behaviors impede competent functioning. I love the way you reframe things Amelia. You are a case study of one and as such make autism very individual. I know people with one or a few of many of the characteristics you have mentioned but they are not necessarily getting an autism diagnosis on the basis of that. I also know people who might get an autism diagnosis but do not have one. Still, I have visited programs where carers work with children who wear helmets to avoid them hurting themselves or others when they hit their heads against the walls. I wonder how much effort is made to teach sign language to those who do not have verbal communication. It is interesting that you say you did not speak until you had something to say. That stands out in a world where people are paid to just fill the void with speech. Thank you for sharing yourself with us.
THIS IS ME.
I'm an Aspergian.
And while I can not rattle off every type of train ever built, I have my own lists: World Series results, stations on the New York Subway, crews of the US Mercury, Gemini, and Apollo missions.
And I like the cartoon showing the difference between the stereotypical autistic person and the reality.
READ THIS.
THIS IS ME.
Me, as well! And, like you, Kiwiwriter47, I can rattle off most of the crews of Mercury, Gemini, and Apollo missions, along with the first seven Space Shuttle crews. I remember the dates of BOTH the Challenger disaster (Tuesday, January 28, 1986; 11:38 EST) and the Columbia disaster (Saturday, February 1, 2003, 8:59 EST--BIG space geek here).
I'm not as huge a space geek, and I lost track of the crews and other information after the Space Shuttle started flying -- there were so many missions -- but I am very impressed.
And you know how Asperger's, except for memorization and strong work ethic, is a living hell.
Philámayaye (thank you in Lakȟótiyapi). The biggest benefit of my diagnosis was finally finding commonality for all of my reactions and behaviors that were always labeled as being just a weird quirk only I had.
At least you know you are not as horrible a freak as you think you are.
The worst thing about it is feeling like you just DO NOT BELONG IN THE WORLD.
Not being able to remember stupid stuff or being unable to hold a conversation. It's feeling completely isolated at all times.
My middle son is like that with baseball, as well as history.
Recently self-identified (and clinically supported, if not “diagnosed”) at 42, after running into an absolute brick wall of burnout at the end of last year. Understanding myself much more fully, now. The autism and neurodivergence community is no question the best thing about the internet, in my view.
Philámayaye (thank you in Lakȟótiyapi) and welcome to "the club."
Thank you!
Philámayaye (thank you in Lakȟótiyapi)!
What comes to my mind reading this insightful piece by Amelia is the Myth of Normal. We make ourselves sick by assuming what normal is rather than embracing our differences as the healthy norm. As a child I was labelled with attention deficit disorder when in reality I only attended to the world differently. As an adult that difference is paying dividends as I write about how I attended to the world went against the cookie cutter order imposed upon me by school as a student. School had separated subjects that were inseparable to my mind. I was busy making connections that went against our order of things to see the bigger connected picture.
Indeed, when you put together all the stats of different groups who "aren't normal", I ask, as I have elsewhere, has it become abnormal to be "normal"??? If diversity outnumbers "normal" then isn't it well past time to stop separating people as "different" according to a minority measuring stick?
Exactly, Republicans fear- resent the fact that America is becoming a nation where minorities are becoming the majority...it sucks to be an illiberal white fantasizing about the good old days of the good old boys. Trumpism is all about resenting progressive change....diversity.
Later it was determined that I was gifted. I was bored at school. Not suffering from attention disorder at all.. So, I experienced being "special" in both ways negative and positive. Both labels were wrong. I was merely different as my parents were. They modeled lifelong learning, independent thinking skills-organic learning rather than FOLLOWING the standard procedures. School was interrupting my education. At university, in political science I argued we needed to DE- school society so that we are not so schooled to label but to embrace diversity and civics so that we can become a more democratic society. Lack of independent thinking skills and authoritarian personality traits have been measured and documented in FOLLOWERS of Trump.
Philámayaye (thank you in Lakȟótiyapi). "Normal ain't nothing but a setting on the dryer."
You are very welcome, Amelia. We need more experience based-insight based reporting like you offer rather than data based-poll based-specialized spins that are deadline based rather than wisdom based. Speed and specialization- meeting deadlines-filling space fast leaves less room for holistic wisdom.
"Reading between the lines to get what a person really means baffles me. Why not say exactly what you mean?" I love this so much.
I HATE jokes or really, kidding. "Oh, hey, I was only kidding." I've only told everyone in my life a thousand times I don't get kidding. I don't understand & I think it's cruel. No I won't get over it. Just don't kid with me. Say what you mean & mean what you say, please. I will hardly speak to my brother any more. He won't stop & thinks it's hysterical to upset me. We're 60 & 70 yo. We're both on the spectrum.
👏👏👏 I have a sense of humour, I "get" genuine jokes, but I too find "kidding" to actually be a form of bullying if people know you don't like it but they continue. I especially hate seeing it be done to other people & often intervene to support the one being attacked & hurt to let them know I understand & support them. But I wish people who say they care about someone would just take them at their word & stop eh?
My culture is very much about joking with each other, but it's always with each other and more often self-deprecating.
I can't stand the poking and prodding some people do for the sole purpose of upsetting someone that they mislabel as "just kidding around." Yeah, no, that's bullying.
Philámayaye (thank you in Lakȟótiyapi). It's so aggravating to have people argue with me about what I "really meant."
I have several of these "symptoms". I "hear" too much. I was hyperactive in early years so I was put in dance and tumbling. I pause when speaking to "find" the word that fits. I am hypersensitive to spices. I hear music of any kind first before vocal sound so I have a hard time in venues with background music when I am supposed to carry on a conversation. All my life. A couple of other "things". I never considered it was autism. I just thought everyone else had their own different problems.
Philámayaye (thank you in Lakȟótiyapi) for sharing. I'm glad you were able to connect with some of my experiences.
THANK YOU! What an informative and thoughtful article. I learned a lot from this. I’m not on the spectrum but have friends that are. Your experience and explanations I believe will make me a more informed, understanding person going forward. Thank you so much for sharing. 💜
Philámayaye (thank you in Lakȟótiyapi) for reading it.
This is wonderful! A lot of these symptoms show up in my husband, myself, and my son as well as my autistic daughter. As it turns out, for philosophical reasons, I was protective of my kids’ autonomy and agency as they were growing up and as I learn more about our brains I am grateful that I let toddlers, preschoolers, and school kids dictate to the family when warranted (I can’t handle the noise at this musical, the height of this restaurant, scratchy clothing, etc.) Even if I didn’t understand everyone’s operating system, I have few regrets because we always treated sensory issues, mental exhaustion, video gaming, as indicating needs, not willfulness.
Philámayaye (thank you in Lakȟótiyapi). What a wonderfully nurturing attitude. Your children are blessed.
While attending a conference and seeing a presentation in which the presenter referred to her research participants as "Aspygirls", I checked off nearly every indicater she presented regarding women who'd been misdiagnosed all their lives and have a high probability of being Autistic. I then looked for someone with expertise in late diagnosis of women and got my official diagnois of ASD. That was an enlightening moment that cast an entirely different interpretation of my life's experiences. Interestingly, I am also a behavior analyst, which means I provide applied behavior analytic programs to assist individuals (many autistic) in increasing their independence and addressing any individual needs they or their families have identified. Now, I have to say, that if I had been the recipient of traditional ABA as a child, I would have responded violently to that treatment and likely have been institionalized as a result. However, as a modern and non-traditional behavior analyst, one who is a firm believer in the right of everyone to refuse to be compliant and to be unique and interesting individuals, I provide what is becoming known in our field as "compassionate care". I do not try to mask anyone's individual traits or try to turn an atypical person into a typical person. I wouldn't like it if someone tried to do that to me, so I'm not doing it to them. Applied Behavior Analysis has been going through significant changes largely the result of the feedback recieved from previous recipients of ABA programs. I want to make two comments regarding the statements made in this article about ABA. First, like you mentioned, every autistic person is unique just like every non-autistic person is unique, and we range across a wide spectrum of skill strenghts and skill deficits. What I have observed in autistic adults who have significant skill strengths is a tendency not to recognize that there is a significant population of autistics with significant skill deficits in communication and daily living skills who would have their independence seriously limited without ABA programs to help. I have also observed in my field a tendency for ABA professionals to not recognize the population of autistics who do no have severe skill deficits and therefore do not need any intervention and if they get treatment, it's usually not appropriate. So that is my first comment regarding negative comments about ABA. The other comment is that it's very common for people to speak in absolutes, for example, something is always one way, or never one way. When people use absolutes to refer to the historically and sometimes current traumatic ABA programming, and advocate against it without qualifying what they say, then they are misrepresenting whatever it is they spoke so absolutely about and are in fact engaging in the same behavior they complain about when people refer to them in absolute terms. So my second comment is, as much as we each want to be treated uniquely and recognized for our strenghts and assisted for our weaknesses, we should recognize that we do the same for others autistic and non-autistic, and for programs intended to teach. Let's face it, many public schools and many teachers are terrible in how they teach or respond to kids with autism, but no one is advocating that we end public education for autistics. My personal experiences with the public school both as a student and as an educator have been both positive and negative but I don't advocate for the end of public school because they aren't perfect or had a history of poorly treating individuals with disabilities or autism. However, I frequently see this response by autistics, to advocate against something that is not universally negative and in fact helps so many people. There seems to be no flexibility or recognition that many behavior analysts, including myself, are actually helping people and are not in any way hurting or traumatizing anyone. Just once, I'd like to read an article that provides a balanced view of ABA rather than advocating for or against. Thank you, Wendy Weller, PhD, BCBA-D.
That was my intent with this passage:
"The puzzle piece organization also advocates the use of a form of Applied Behavior Analysis (ABA), which forces children with autism to mask everything. Its goal is compliance and obedience not focused on the best interests of the autistic individual.
This controversial ABA has been criticized as abusive and traumatic and has negatively impacted the public's perception of all forms of ABA."
ABA isn't inherently bad, but like many forms of therapy or treatment, when the needs of the recipient get discarded for the convenience or comfort of others, the methods and outcome rarely have a positive effect on the patient. Unfortunately the well funded, highly publicized puzzle group has pushed for ABA that caters to caregivers wants at any cost.
I've used ABA at different points in my life to help me attain several of my own goals. I highly recommend it for that purpose.
I've only had one disastrous ABA experience which was a forced one because my school counselor diagnosed me as "weird for a girl" and the administration demanded I get treatment to make me normal. It was worthless mostly because the male analyst had preconceived, immovable prejudices about the intellect and motivations of teenage girls. He kept trying to make me work towards getting a boyfriend and making myself prettier because, isn't that the dream of every teenage girl?
He thought ridicule and humiliation were the only effective ways to get a desired result from females—his actual comments to my Mother, not my perception. Unfortunately for him, I have ASD and was pretty immune to his methods. He refused to treat me any longer after I "made him cry." I got transferred to an extremely effective member from the same office who asked what I wanted.
If ALL of my ABA experiences had been like his version of treatment, I could see branding it worthless.
But I know people whose only ABA experiences were of the puzzle piece organization variety, where physical restraints, forced physical contact and being blasted with sounds and other triggering stimuli to force "desensitization" were the methodology. No one got desensitized—they got traumatized into no longer outwardly reacting. Which was the goal of that organization—compliant, normal looking kids so their family didn't have to be embarrassed or inconvenienced.
Those people are an extremely hard sell on ABA even though there's ample evidence of non-abusive forms of ABA being beneficial to recipients.
I have used ABA on my own child. It helped her to read and to get through shots. Still, overusing it is a problem too. However, part of ABA is fade the rewards as the behavior is adopted. I think everyone who plans treats in for themselves to help them do tasks that they do not want is using ABA. Still, I know everything can be poorly done especially if the person doing it does not understand it. It is supposed to help people achieve goals they want to achieve, but I have also used it for things that I felt were necessary like my daughter getting a treat after a shot. Pediatric dentists do this too. They have a treasure chest. I am so grateful that ours did not offer candies like so many do. I have taught a lot of children assumed to be on the Autism spectrum. I have had a good relationship because I am very direct. This is just part of my German cultural heritage. So, again, there is a bell curve of characteristics and everyone falls somewhere on that curve. Good for you for your self acceptance. It is a rare quality not cultivated in women.
In education, in particular, I have been pleased to see more support for individuals and agency, but there is still way too much focus on obedience. I’m grateful my kids turned out cooperative instead of compliant. As a high tech leader, as a mom, and as an education author and advocate, I have been advocating for supporting each person’s psychological needs of autonomy, mastery, and connection which are crucial for motivation. I combine that with metacognition as the two elements crucial in agency. But in order to support that, teachers need to stope demanding obedience as respect and earn their respect by first offering it to students. I suspect this is why a lot of folks with means are keeping their kids in microschools and nontraditional settings.
I think the demand for compliance from parents and from teachers is in part why ABA ended up running so many compliance programs. Our ethical requirement is that treatment we provide is relevant for the individual, family, and community. Of course, the number one thing we're often asked to do is increae compliance. I explain to stakeholders that I cannot ethically orovide compliance training as it is not in the best interest of any individual to comply with every adult or peer request. Instead, I teach stakeholders that everyone has the right to say no to anything and I try to teach them how to accept that and perhaps start to identify why refusal is occurring and problem solve rather than looking for rote obedience. Not easy, obedience has long been an expectation of children or individuals perceived as unable to make decisions.
Yes! I think this is also why schools are still focused on compliance. But relationships with people are much richer if you are not trying to train them or force them into compliance. I found this to be true when my newborns first nursed and were able to communicate when they were ready to switch sides. My internal experience of interacting with these babies was one of collaboration where my job was literally anything that required coordination, mobility, or anything else they had yet to grow into. Just because a person is not articulate doesn’t mean that their preferences and needs are less important. My soul-searching about values when I was first pregnant led me to prioritizing control-proofing my kids in the sense of immunizing them against controlling people, especially partners. I wanted them to experience the full respect from their parents as normal so that if they ran into controlling individuals they would recognize it and have boundary setting skills. So I always tried to treat them they way I would want them to expect to be treated by their future partners. And had meta-discussions with them about that so they could, when older, consciously make decisions about how and when they wanted boundaries.
My mother was so frustrated with me growing up in the 60s/70s. She thought I was doing all this on purpose. Why, I would say, when I hate attention, would I do things to bring attention to myself?
I’m so thankful that information is now getting out that there are many folks who just simply have a different operating system. Thank you for doing your part to raise awareness and normalize being somewhat different.
Philámayaye (thank you in Lakȟótiyapi). I lucked out with my Mother. Her parenting style meshed well with my aversion to touch. If she had been more physically demonstrative or demanding of affection, I think my childhood would have been drastically different.
Thank you, Amelia, for expanding my understanding. I will be sharing this article with friends and family.
Here’s a possibly related experience from my own life concerning word retrieval, especially proper nouns. My mother would occasionally use the name of the person she was looking at, rather than the name of the person she was speaking about. And as I get older, I find myself struggling to recall people’s names. Not all the time and not people currently in my social circles. Meanwhile, beginning in my 60s, I’ve needed to ask people to speak slower so that I can follow along. When watching John Oliver, I set playback at 85%.
At a certain point, aging is perhaps a time of increased neurodivergence.
I agree. That "hunting for a word" increases as you age (I'm almost 80) but I know the word is THERE. I just have to let my brain sort through the rest of my vocabulary. It's mostly when speaking, but happening more when writing now. When writing I can afford to wait. With speaking, "thingamajig" or "thingy" are some of my go-to words that don't leave me.
I've naturally looked this kind of thing up, and am pretty sure it isn't "senility," just aging.
I've always been rotten with names and faces.
I sympathize completely with neurodiverse people being accepted for who they are. If I want to be accepted as a still "high functioning" 80 year old with word hunting issues, I can't gainsay folks with other similar issues. But I do wonder if they are necessarily as diverse, as to particular traits, as they are filled with CONCENTRATED diverse traits. I wonder if the spectrum extends to ALL human beings, but in very very attenuated forms in "normies."
What you're describing is aphasia which is almost a universal part of aging. It only becomes an issue in sudden onset of severe cases.
Dysphasia is most common among neurodivergent people and remains fairly consistent throughout life. The variations in severity are generally associated with fatigue or reactions to stimuli.
But a person with lifelong dysphasia can also experience aphasia as they age. I'm 54 now, but I haven't noticed my word hunting becoming more common yet.
I too have noticed I listen to books on about 85% speed. I have to use closed caption to watch TV. I'm 61. My family insisted I get hearing aids. Spent a fortune on the best. What a waste of money. I hear fine. It's the understanding part in my brain that has slowed down. I understand half of people just fine. And don't understand fast talkers. I hate to talk on the phone with a passion. I love to text. Unfortunately most people in my life are the opposite. It's so frustrating.
Nouns are tricky. Proper nouns, even more so I find.
It's more often verbs and descriptors for me. Proper nouns are one of the things I can almost always articulate.
I think that might be related to my autism, though, as there's a tendency to collect specific information. For my Father, it was NASA missions and every ship ever in the United States Navy.
Mine is obscure animals or dog/cat breeds. I can recall a Hyrax looks like an evil twin of a Quokka, but not be able to remember anything other than "Please, dish" when I want someone to hand me the large, red serving dish.
Who On Earth . .
He was once thought maybe Autistic!
but preferred an explanation more Mystic
Simply couldn't Refuse . .a Constantly
nagging Muse . .on sonnets, villanelles
even Limericks! insisting ..
Are You Talking About? . . .# Three Guesses . .. .
You are my hero... & one of my go to pods every day along with J Vance & Heather Cox Richardson. Thankyou. Love you.
Deidre
Philámayaye (thank you in Lakȟótiyapi) for your kind words.
This was very enlightening. Thank you for the courage to write it. I am NOT autistic but I have some of the traits you described so eloquently and share your frustration. Because I'm not autistic, I've been spared abuse but I've seen eyerolls at times. Thank you for this article.
Philámayaye (thank you in Lakȟótiyapi) for reading it.
This one post is worth the entire year's subscription price. My 10-year-old grandson has been diagnosed with some form of autism. I'm forwarding this to his parents. I hope it will help them understand and accept him better.
Philámayaye (thank you in Lakȟótiyapi) for your support of our Substack. I've been able to help several friends with autistic children to diagnose issues their primary care physicians are struggling with. Autistic adolescents and adults can be great resources for parents.
Amelia this is a very interesting piece. I love learning new things. When I first learned about autism, was around the time that Dr. Temple Grandin was being discussed in the media. Her self awareness helped to develop understanding for Autism. When I studied school psychology we learned that spectrum meant that everyone was on the bell curve of the behaviors, which means we all have some. So, we were taught that the point at which autism is diagnosed is when behaviors impede competent functioning. I love the way you reframe things Amelia. You are a case study of one and as such make autism very individual. I know people with one or a few of many of the characteristics you have mentioned but they are not necessarily getting an autism diagnosis on the basis of that. I also know people who might get an autism diagnosis but do not have one. Still, I have visited programs where carers work with children who wear helmets to avoid them hurting themselves or others when they hit their heads against the walls. I wonder how much effort is made to teach sign language to those who do not have verbal communication. It is interesting that you say you did not speak until you had something to say. That stands out in a world where people are paid to just fill the void with speech. Thank you for sharing yourself with us.
Philámayaye (thank you in Lakȟótiyapi) for your kind words.