When I identify myself as an autistic woman who is whole and happy, I get a lot of people telling me that I can’t possibly be autistic. I don’t fit their stereotyped idea of what that means. I get it everywhere I come out with my diagnosis. I get if from professionals who are paid to know better, and I get it from friends and co-workers. Even new acquaintances love to judge if someone’s autism diagnosis is legitimate.
I don’t know why people feel qualified to decide if this particular aspect of our personality and cognition should apply to us or not. Imagine if people felt the right to decide if you are gay or not. Or imagine if people looked at someone using hearing aids and said that hearing loss is over-diagnosed.
It is true that autism is stigmatized. It’s also true that a lot of autistic people experience institutional abuse. I experienced this myself. I was placed in special education in the 3rd grade and endured much abuse while I was receiving their help. There is even a trend towards medicating autistic people with antipsychotics, the result of which is much explored in other places on the internet.
But autism isn’t a mental illness. Autism is a difference in the way that we develop. Studies today show that we can tell which babies will eventually fit the criteria for autism at the early age of 18 months. Some early studies even show this is true at 2 months. Put shortly, autism simply means that a person is not born with the typical human drive to absorb social information. We don’t tend to focus in on people’s eyes instinctively. We don’t favor putting our attention towards human voices more strongly than non-human sounds, as typical children do. This is fantastic for an autistic adult looking to understand themselves, but does little for the diagnostician who is deciding how to treat the individual in front of them.
Autism is an umbrella diagnosis at this point. There is a huge variation in presentations and symptoms that all fit into this one category. The broadness of the diagnosis doesn’t tend to be useful to clinicians. In fact, as a special education teacher, I can tell you it’s rather problematic when I’m presented with a new student and only told that they are autistic, without more details. But the broadness of the diagnosis is very useful to the individuals. It’s useful to the people who live with it.
There’s a lot of criticism flung at both the Neurodiversity movement and the Mad Pride movement that we are bad for people who are called low functioning. I call bullshit on that. I think the real threat is that we’re talking about the so-called low functioning people like they are peers. We’re talking about them and us as if there is no “them and us,” just us. In short, we’re interacting with people as if they are just that—people.
The broadness of the autism diagnosis helps me see the humanity in people who need more supports than I need. It helps me understand what we have in common. That broadness allows me to interact with autistic people all over the world, everyone from CEOs to people who require help with clothing themselves (and CEOs who need help clothing themselves). It gives us a common sense of community. When I identify with people who have full time caregivers, I can use some of the ways that their caregivers give help to help myself.
Who does it threaten when we actively embrace people who have the same set of neurodivergent traits as our own, but in a much less subtle way? Let me put that another way: If we had a society where everyone embraced all of neurodiversity, meaning that every typically developing and non-typically developing person is held as equally worthy of respect, what would that society look like? How would you even be able to sell antidepressants to a population that had never been told that their human value is dependent on how well they conform to a social norm?
These people, who are sometimes called “low functioning,” have serious skills in the area of living with autism. Some of the ideas I’ve lifted off of my higher-needs peers include: Noise-cancelling headphones to keep noises from getting me all upset, weighted blankets and other weighted items for when I do get upset, and visual schedules of common daily activities that help me feel like they are entirely doable and not overwhelming.
An autism diagnosis can open up a whole new category of ways to support an individual who is suffering emotionally. Since autism is not a mental illness, we don’t have the same therapies for it. Types of therapy that can be used to help an autistic person include occupational therapy and speech therapy. There are also special education supports, some of which work just fine for adults struggling with daily tasks. Academic accommodations can make a huge difference to a struggling kid.
There are dozens of ways that we can help a child or an adult who has any sort of cognitive diagnosis. When applied appropriately and in line with the desires of the individual receiving the therapy, they can reduce stress and upset, help the individual develop a strong sense of self, and generally make life better. When we withhold therapies and supports, we see higher rates of medications and psychiatric hospitalizations.
Accepting myself as a peer with people who have more visible struggles than I do gives me more than just practical solutions. Knowing people helps me know myself. When I’m in a large group and it’s hard for me to follow the conversation, I can recognize that cognitively, I have a harder time following because I don’t filter sounds as well, and I switch focus with less ease than most of the other people in that conversation. I’m not bad, sad, or sickly. I’m just autistic. It’s normal for us.
When I slip and do something that causes me embarrassment, I sometimes beat up on myself for not being good enough. With an understanding of my autism, I can remember that I would never say the things I’m saying to myself to my autistic students. I can break tasks down for me, the same way I would for them. I can encourage myself the same way I encourage them. I can forgive myself the greater time needed in processing conversations. I can forgive myself for being way more tired than my neurotypical friends at the end of a busy event.
Despite all these psychological benefits, psychiatrists have this way of attempting to erase our autism diagnoses. It’s happened to the vast majority of autistic people I know. You’re sitting in a psychiatrists office, looking for help. They take a history, as doctors often do, and ask for your medical history. You tell them you’re diagnosed autistic. The doctor frowns. He tells you there’s no way that you can be autistic. You sigh. It’s going to be one of those appointments. But this time, you are ready with the 10 page neuro-psych evaluation you have from the PhD that diagnosed you.
Mind you, with ANY other disorder, the doctor would simply nod and record. No one asks to see the tests that tell you that you have diabetes. The psychiatrists looks at your ten page report for a bare second, and again tells you that there’s no way you are autistic. You’re much too articulate, and your hair is neat. He then proceeds to note that you have delusions and low self-esteem. He decides you have Borderline Personality Disorder, with depressive features.
He suggests group therapy… which… nothing could be harder for an autistic person who doesn’t hear well in groups. And of course, there’s the antidepressant medications. When you object that you don’t feel depressed, just too sensitive to the world, he adds a mood stabilizer on top of it.
Whether doctors find it clinically useful to diagnose me with autism is not my top priority. My top priority is making advocating for myself and for people who don’t have the skills to advocate for themselves. We don’t exist solely to receive therapies and be a consumer for the medical service industry. I exist for my own purposes. So please, if someone tells you that they identify as an autistic person, be respectful. Don’t tell them that autism is over-diagnosed. Understand that if they are using this label for themselves, it’s likely because it’s serving them somehow. Instead, ask them what autism means for them.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.
Well I won’t take your autistic away from you. I’m neurodiverse also and if you live long enough it might
be pretty obvious that everyone is.
You “connect” with other “autistic” people. People connect with that with which they identify. Artists with artists, politicians with their ilk, shrinks with theirs. The acceptance you talk about, should be the norm and should obviously not be limited to “autistic”.
I’m not sure why you are comfortable with one label but not the ones a shrink wants to give or add on top of it. I guess those labels fit someone else.
You can see that adopting one label NEVER lets you off the hook. And I sure as heck hope that you do not believe that the drugs are medications and that it’s okay to see your students put on them.
I’m sick of the term “low functioning”. There are a whole lot of people who are “high functioning” and are nasty sadistic pricks. But that is our neurodiverse society. We just don’t do anything about the “functioning” ones. No labels, no drugs.
There is an article here to show you an example of “high functioning” https://www.theglobeandmail.com/news/national/doctors-at-ontario-mental-health-facility-tortured-patients-court-finds/article35246519/
Now you have to remember that the judge ruled that no malice was intended. And really, it was not long ago. And you have to remember how many hundreds and hundreds of doctors and nurses never said anything. Not before nor after. What is important to know is that there are certain types who go into psychiatry and “function”. Function is NOT a given good thing or sign of ethics, morals, or of any social advancement benefit to society. A person obviously can be homeless and never cause anyone grief.
And psychiatry has NOT changed for some “better” function. Because it draws a certain neurodiverse crowd.
“Understand that if they are using this label for themselves, it’s likely because it’s serving them somehow. Instead, ask them what autism means for them.”
That’s from your informed adult perspective.
I work with adolescents with autism diagnoses and for a lot of them it has been forced onto them, is not serving them and is experienced as degrading. In many cases it also seems completely unjustified to me.
A lot of child and youth psychiatrists seem to know exactly two labels, ADHS and ASD, and stamp them on everyone crossing their paths. Right on the cutoff of ADOS is something I see more often than not. The fishing for a diagnosis is super obvious.
First off it is a weird feeling for a child to be singled out, taken by the hand to go see the school’s “head” person. Most kids know exactly what is going on and they do not benefit. Sure they might get those “services”. Psychiatry benefits. It is horrible to be “observed”. A child can perhaps tell you when they are a 50 or 60 year old adult, how it made them feel and how perhaps they never connected how it actually affected them.
All we need is more nami parents to tell their kids/teens that their labels are something to sport, to be proud of. And a stupid thing to do when in reality the kid does not feel the same.
I was 8 when I was first diagnosed. Please read the blog before commenting.
So that was what? Two decades ago?
It’s great that the diagnosis has helped you, but that doesn’t mean it can’t be overused now.
And where it is overused it masks real struggles and prevents needed solutions. Abused children don’t need therapy for autism. They need therapy for their parents.
Dana, please attempt to give a reasonable explanation for the massive increase in ‘diagnosis’ of ‘autism’ in recent decades? And what precisely, in your view is ‘autism’? What ‘things’ do all or most as autists have in common, do you mean to say they have little interest in others?
Dana, as recently as several decades ago a dictionary running to over two and a half thousand pages had no entry for ‘autism’ in its main text, only in an addenda. Its was so rare to be so described. Why do you think huge numbers of people are now described as “morbidly self obsessed and out of touch with reality” when, like with yourself, there is ample evidence that this description is simply untrue?
I’m sorry Dana, although I greatly respect what you’re trying to put forth, that you see “Autism” as something that can be seen more as an innate trait of a whole aspect of the human population, and how you can see yourself reflected in others, and how this phenomenon can be respected and nurtured; but I don’t feel you have responded fairly to what beokay wrote, and it’s clear to me that beokay did read your blog. To say, please read the blog before commenting, when there’s a challenge to what you wrote, is a rather standard accusation people make. Beokay simply brought up a very valid question regarding what you said, that really doesn’t meant that they didn’t read your blog, that means they question something in it or wish to bring in further dialogue that expands the context.
Beokay and other people here have responded with extreme concern, and have truly valid concerns. It’s wonderful that you have come to terms with the term “autism” but that doesn’t mean it’s not seen as hate speech by other people, or something that has confused them extremely and was forced on them without their own understanding, nor does it mean that they were given the space to offer input from themselves as to what they felt was going on rather than just being told what’s going on with them from others, with the whole stance of objectivity and authority (which Sam Plover pointed out). You yourself say it’s an umbrella diagnosis. And you also don’t mention the whole matrix of people who might have the same symptoms, but never had to deal with the psychiatric labeling, don’t want to be involved with labeling that is psychiatric, don’t want a psychiatric label, don’t want to be called “autistic” and have a whole other insight into it, which might be more holistic. And you might be truly at a loss to not know how people were at peace who had no need of such diagnosis, although they did, or do, or will have, the same symptoms.
You list such things as not looking at people, being more sensitive to ambient sounds and dialogue, being upset when you trip; but those are just experiences, to list those as symptoms, and bring in this “diagnosis” can very much take away understanding, and rob people (other people who are uncomfortable with the diagnosis) of seeing that they are fine the way they are, that it’s just something innate to them that’s different. That you found peace there, can be something very different for others. That’s what others were trying to point out who have seen that.
You can say it’s not a psychiatric illness, but that’s more wishful thinking on your part than reality. No, the symptoms may not be, but the word is. Autism is seen as a psychiatric illness. The diagnosis does confuse a lot of people, and it’s also used to promote psychiatric drugs, or treatment that only analyses their behavior rather than acknowledging what might be going on that goes against medical hegemony, or diagnosis based on behavior rather than relating to the person. Behavior you can program a robot to do, but relating to a person is something more human than that.
And to say it’s not over-diagnosed when it might be used to say there’s a genetic flaw although there’s evidence pointing out that it’s the environment, but that evidence is not acknowledged, that’s really overlooking something that shouldn’t be overlooked.
What if toxicity can cause what’s diagnosed as Autism, whether or not the symptoms are the same as yours, but the term is used? What if vaccines or other unacknowledged issues can cause Autism. What if modern schooling and forcing a person to have to deal with a social environment they don’t feel comfortable with, or having to be inundated with standard curriculum that doesn’t really interest them or that they understand too readily or too slowly, or a whole list of other things causes what’s labeled as a neurological disorder called Austism?
When the documentary vaxxed is suppressed, when a documentary about root canals (also quite articulate with scientific data that’s uncomfortable for mainstream standard practice) is suppressed, when Charlie Rose can have someone on his show touting that they know psychiatric illness comes from a brain malfunction while completely not sharing the one scientific truth that’s the clearest, and that psychiatric treatment causes brain malfunction (chemical imbalance, addiction, deterioration); how much does this come from corporate interested calling themselves medical and making money off of it rather than truth. And all the rest of it: sugar, caffeine, pesticides, fluoride, food coloring, preservatives, gluten and other stuff that’s proven to cause swelling and can be bad for your intestines (another sign of “autism”)…all stuff that can be overlooked when someone is “diagnosed.”
You and others may have strong feelings about what I just inserted in the prior paragraph, as to whether that’s valid or not; but typically ONE or TWO of those things will be singled out to invalidate all of the rest. Instead you get the diagnosis, which in such a case is really over-diagnosis. That’s more than just umbrella diagnosis, that’s a smoke screen.
Whether autism is overdiagnosed depends on how you define autism. Should an individual who has a very low iq, who can speak only a few words and who cannot interact with others at all be put in the same “autistic” category as someone who is intelligent, very verbal, and able to interact socially even with difficulty. To me that doesn’t make sense. I understand that accepting the label autism is a comfort to you. And a lot of educational, financial and social help for children having difficulties probably depends on applying this label. But I suspect there’s also a downside to putting children in a categorical box and encouraging them to see themselves as having a disorder instead of seeing themselves as being like everyone else with their own unique strengths and limitations.
“And a lot of educational, financial and social help for children having difficulties probably depends on applying this label.”
And is psychiatry so limited in language that they could not write a letter to the services that a child or adult might require? The letter could state what areas a person has trouble with. Or what area of “troubles” cause personal hardship and stresses. So if it’s noise, light, social discomforts (which could really just be noise or light, or the wrong activity, etc etc or include not being with the right people)…my point being, a letter could list the areas that a kid needs extra help with. And why exactly would we have schools that serve only one type of kid? So instead of a label which tells no one anything, language can be used. In fact a mother could perhaps write a better letter than the “doctor” but if it needs an official stamp to qualify for befitting environments, that stamp does indeed not need to say “autistic”. It is time to stop calling a befitting environment as “extra help”. A choice of environments would be the normal way to provide for diverse populations instead of constructing a system that has the audacity to call differences in people “disorders” or “illness”
It seems scientifically sketchy at best to suggest that something is “overdiagnosed” or “underdiagosed” or “not overdiagnosed” when there is no way to measure what the correct level of “diagnosis” could possibly be. It’s like arguing whether kids need more or less recess or more or less discipline in school. There is not a “right answer,” and it is silly to talk about it as if there were. More or harsher discipline has certain consequences, which some people like and some people don’t. It’s totally subjective. Same with basically all of these psych diagnoses, including autism. There is no way to “over- or underdiagnose” because there is not correct level of “diagnosis,” mostly because these are not definable medical conditions but socially-bound, subjective definitions based on beliefs and values rather than any kind of scientific observations.
I believe that the way autism is defined today is overly broad and is a subjective social construct. The term is so nebulous I don’t see how it could be used in meaningful research. However, I do think a narrow definition, such as the one used 50 years ago, which described very severely disturbed children, may have had merit.
You may be correct in your evaluation, but my point still stands: until someone comes up with an objective standard that is based on a real-world, replicable measurement that doesn’t depend on the opinion of “experts,” the boundaries of any “diagnosis” will continue to expand and no argument regarding “overdiagnosis” can ever be made, because there is no standard for diagnosing. The rest is all philosophy, and generally not even very good philosophy at that.
The definition of autism has not changed in the last fifty years but who qualifies has changed dramatically. Autism was holding steady at 1:2500 fifty years ago according to the CDC; it is diagnosed at nearly FIFTY TIMES that rate now (1:56). However, “autism spectrum disorder” no longer includes children who are “very severely disturbed”; they would now be described as “mentally ill.”
I wrote a paper on autism (for a master’s degree) in the 1970s. What was considered autistic then is not the same as today.
If the definition remains the same but who qualifies has completely changed, I retract my previous comment and defer to Steve’s previous comment (wisdom). Thank you for clarifying the issue for me, Marie; the definition of autism is too ambiguous to debate.
I’m neurodivergent. We’re all neurodivergent now. Our minds can imagine things that never where while responding to the actualitie of what is. We are all different – neurodivergent- having different environmental stimuli to interpret but we’re all the same, what’s the point in having a brain if it doesn’t respond to its environment. We cant just imagine any old thing and make it happen any old way.
We operate basically subjectively in a world whose déirce objective reality is near impossible to know with any certainty. And what does a ‘diagnosis’ do – it to ignores this reality and maps the real (psychological attitudes, disjunctures in relationships, society in turmoil, real tangible material deprivation (homelessness, unemployment, lack of training and education, unavailability of healthcare and welfare)) by pathologising, individualising and personalising with the illusory objectivity of a psychiatric/psychological diagnosis. Placing all responsibility in the hands of the most vulnerable – scapegoating.
I respect diversity but when as a child I had a problem reading I wasn’t ‘diagnosed’ with a developmental disorder, neither was my ‘neurodiversity’ celebrated – I was placed in a class appropriate to my reading age! Thus I learned to read(as it turned out chronologically I was the youngest in class).
It’s true that we are all subjects with our own subjective experience and understanding. We experienced depression, anxiety, psychosis in individual ways but if all we have to go on to understand what ‘autism’ means is to ask the person ‘identifying’ as such i’m none the wiser as to what it means. I must catch up and read a few more chapters of Sami Tamimis book.
“Neurodivergence” is the new “mental illness.” I challenge anyone to demonstrate or explain otherwise, even hypothetically.
Neuro divergent will probably be used similar to bipolar – ie. address concerns about stigmatising language by invalidating those concerns. Claiming that replacing one word with another while simultaneously loosing the ‘diagnistic’ criteria and thus expanding your market. Its a bit frightening actually as the word neuro-divergence is a fact of all brains (there is no ‘typical’ neurological configuration) , it applies to all of us!
There’s two things going on, at least, probably more, but to stick with (2):
There ARE a lot of people who are forced on an autism diagnosis, and that’s done in a way to make them clinically think there’s something wrong with them, I’ve heard this from a therapist I know even. They told me how they were frustrated with people who use the diagnosis as an excuse, the same way someone would say that they have a physical condition preventing them from physical activity someone ends up defining their cognitive, emotional and even spiritual abilities, as if they simply can’t fill-in-the-blank. When this is done in a way that shuts down a person’s ability to relate to themselves, no matter how kindly this is done, no matter how much a “therapist” believes that they are helping a poor diseased person understand their reactions, this is Munchausen NOT therapy. And all of the hallmark card niceties, all of the candy sweetness and all of the coy singsong tone that this is administered with doesn’t change that. And you can end up getting the whole psychiatric system giving rewards when one sees themselves that way, and have it be disabling rather than empowering. There’s often no excuse made for REAL physical problems that could be causing the problems listed as autism which could be coming from a whole number of sources, and yes I believe that vaccines can cause brain damage, which is even listed as a side effect OF them. Beyond that there’s nutrition, environment in general, and if you believe people have a soul and reincarnate there could be emotional challenges at a soul level, as far out in left field as that seems, that should be acknowledged if a person has such curiosity, or they could just be someone who processes life differently, someone who needs legroom to work out their own feelings, thoughts, intuitions, experiences and instincts about something rather than following rote guidance, social patterns, indoctrination or other “authorities”. All of that is largely dis-acknowledged by psychiatry or the medical community.
And then you have people that simply are different, that have their own inner world that’s as real and as strong, or more prominent, than what’s called the objective world. Every great creative artist in a way has to be of such an ilk, they have to be able to relate to a world where emotions take on a reality beyond the world that’s physically tangible, because they are working with how emotions create an architecture that somehow brings out the meaning or the purpose of life (and thus the beauty), and that can’t be tangible because it melds with what’s called the future and remains beyond our grasp but urges us on with hope. Or anyone that simply processes life by being in their own world, having their own innate completely individual way of doing things, regardless of what the norm is, or how they are supposed to behave to not be made to feel they are weird.
I completely understand how frustrating it is when you’ve grown to understand the part of yourself that’s functional on its own, without having to adapt to social norms, and that then what you call autism you don’t see as being over-diagnosed. But WHY is the word “diagnose” even involved. That’s QUITE a misnomer, of not a very misleading red herring. What does it have to do with what a diagnosis is? I wouldn’t go to my doctor to be diagnosed as an artist or not; I wouldn’t even go to the creative community in order to be accepted as such or not. Neither would feel I wasn’t a chef when whatever recipe I thought was worth imbibing didn’t end up on the menu at MickDonuts (I might possibly not be naming a restaurant due to “intellectual” copyright laws)….
I wouldn’t even go to MickDonuts if they gave me an extra prize that said “artist” on it, just for buying their… *ahem*
Oh, excuse me, I meant their diagnosis, I got a little lost there for a moment….
This: “That’s QUITE a misnomer, of not a very misleading red herring” should have been: That’s QUITE a misnomer, if not a very misleading red herring
“Autism is an umbrella diagnosis at this point. There is a huge variation in presentations and symptoms that all fit into this one category.“
Exactly. It has no meaning anymore. When you say you’re autistic, I understand it to be an identity that helps you cope with the world, but not a medical condition with any validity whatsoever.
My daughter has been diagnosed “on the spectrum” as have two nephews. I would have been diagnosed as a child if girls had been so targeted in the 80s. I was also targeted for special education. I’ve always been different. I refuse to jump on the autism bandwagon. It’s no different from the bipolar bandwagon or the borderline bandwagon or the adult adhd bandwagon.
We’ve all got demons we’re fighting. We’ve all got quirks. Neurodiversity applies to all of us, not a special group who seem to want special treatment because they happen to identify with a particular subjective label.
Thank You Dana for your Informative Article, I’m very interested in the airing of this subject.
” Studies today show that we can tell which babies will eventually fit the criteria for autism at the early age of 18 months. Some early studies even show this is true at 2 months. ”
Please provide the links to these studies.
If you are saying autism is an identity, a social group that people identify with and find use from then diagnosis is irrelevent.
The problem with diagnosis is that people diagnosed seldom have choice over the treatment offered and those treatments can often be irrelevent, timewasting or harmful.
Removed for moderation.
Yes, Autism is over-diagnosed. We hardly know what it is, if anything.
The “mental illness” identity? Really? I don’t identify as “mentally ill”, let alone with any particular brand of “off” labeling. The “sickness” (i.e. scapegoating) industry , unfortunately, will continue to operate regardless.
The thing being sold is “treatment”, the diagnostic label goes along with the “treatment”, like love and marriage, or, perhaps, better, crime and prison. The “cure” is realism. While disease may be a social problem, social problems are not diseases.
A lot of excellent points brought up in this blog. The only constructive criticism I have is that in any situation if misdiagnosis and overdiagnosis are occurring, it is unethical not to provide this information. (Informed consent.) The phenomenon of overdiagnosis and misdiagnosis can exist with the diagnosis being legitimate for some and illegitimate for others.
I would also submit that measures should be taken on a large scale to prevent misdiagnosis and overdiagnosis. Also, no disrespect to anyone here but I am not going to be engaging in further conversation. This is my final comment. Thanks!
I’ve finally come to these conclusions: If “autism” is no longer meant to denote organic brain dysfunction it should not be used at all, as it then becomes an abstraction, like “mental illness.” And that “neurodiversity” is a term which belongs under the aegis of “biopsychiatry,” ascribing one’s personality, thoughts and feelings to physical variations in brain structure.
“mental illness” is a distraction from the real psychological, social, economic difficulties those so described face (if any) – What do you propose to address these real and often troubling concerns people have?
Why do you think I even care? Anyway you’re speaking in generalities. I think many people are way too preoccupied with themselves, personal feelings and their “identities.” If you have a plan for revolution and collective control of the planet that’s more the kind of thing I consider worth discussing. I’m not interested in chopping at the branches.
Neuro divergent will probably be used similar to bipolar – ie. address concerns about stigmatising language by invalidating those concerns. Claiming that replacing one word with another while simultaneously loosing the ‘diagnistic’ criteria and thus expanding your market. Its a bit frightening actually as the word neuro-divergence is a fact of all brains (there is no ‘typical’ neurological configuration) , it applies to all of us!
I think you care because you comment several times a week. You might comment on the basic nature of what you think societies response to profound psychological turmoil might be. Even post revolutionary societies are going to have many persons so affected.
Oldhead, how about – nationalising the commanding heights of the economy, promoting the common ownership of the means of production, housing for all, equal access to healthcare, education, the law and other professional services, welfare provision, pensions, leisure amenities. Sounds hopelessly ideal until you realise it has already happened. And oh right maybe UBI and certainly vigorous environmental protections.
Whatuser, speaking of “rights”. Here is a petition I hope you take a look at. Started by people I know, and you do not have to be Canadian to sign.
I need to point out as well that the “them and us” is not between actual autistic people and their high functioning peers abusing the label. The “them and us” is the false division promoted between higher functioning “on the spectrum” folks and the so-called “neurotypical” community. It is insulting to people like me to have very high functioning people referring to themselves as neurodiverse and suggesting they need special treatment that is otherwise unavailable to lower functioning people without the autism label. That’s where this label is doing vast amounts of harm. This is highjacking a medical label for special treatment for folks who now how to game the system. I won’t do that – it is unethical. But it is clear that a growing number of people realize that they will get the help that we all deserve when they apply this label to themselves. I am glad you pointed out that there are doctors and psychiatrists who see through the charade. It does anger me that MIA gave this blog a platform since it basically reads as a set of directions for unethical people to abuse systems of help designed for those in actual need. There are autistic people. I know some. They deserve better than to have what amount to crooks looking for special treatment highjacking their condition.
“high functioning” autistic people still have objectively verified neurological differences, and often on a relatively significant scale, therefore, the term “neurodiverse” applies very well.
Now, for the support, many “high functioning” autistic people require support. This is the reason functioning labels are rarely used anymore and are often perceived to be inaccurate to represent various autistic people.
The only thing that medically divides “low functioning” and “high functioning” autistic people is a difference in IQ, and I’m sure you’re aware that IQ doesn’t necessarily determine how much a person will struggle, therefore, the applied functioning label shouldn’t determine whether or not these people are “highjacking” (*hijacking) anything.
What kind of evidence are you aware of for consistent and objective “neurological differences” in autistic-diagnosed people? I have not seen any such evidence, and have been working with this stuff since the mid-90s. I’m always happy to be educated, but if there is any such evidence, I am not currently aware of it.
Well, autism alone is classified as a neurodevelopmental condition, which implies a general neurological difference alone. Of course, it may be possible that some autistic people don’t have said neurological differences, but who knows.
Whether or not said neurological differences can end up changing over time into a more neurotypical-like structure, I don’t know. I’m not going to dismiss it as a possibility.
There are several pieces of research I can provide that prove neurological differences in autistic people:
Although the neurological differences tend to differ per individual, they’re there nonetheless. It’s certainly not consistent in the sense that they’re the same differences, but it’s absolutely objective.
Thanks for that.
As I suspected, these results are based on functional brain scans, rather than structural differences. Additionally, these patterns are based on averages among participants, rather than specific, consistent differences between the groups being measured. So there very well may be many individuals in the study group who do NOT have the characteristic pattern, and many individuals who DO have the characteristic pattern, who are in the control group. The differences do not distinguish between the groups.
An illustrative quote:
“No research has uncovered a ‘characteristic’ brain structure for autism, meaning that no single pattern of changes appears in every autistic person. Studies of brain structure often turn up dissimilar results — there is great variety across individuals in general. But some trends have begun to emerge for subsets of autistic people. These differences might one day provide some insight into how some autistic people’s brains function. They may also point to bespoke treatments for particular subtypes of autism.”
So SOME people diagnosed with autism have certain characteristics in common in terms of FUNCTION. They state clearly that these findings can’t be considered causal, as they might be the result of rather than the cause of “autistic” behavior, and as they are not close to consistent for anything close to all people so labeled.
The studies are suggestive that there may be some correlates among people labeled as “autistic,” but does not establish that these are either genetic or neurological in origin. Of course, we might expect that from a group of people who are “diagnosed” based on subjective behavioral checklists and clinical judgment. In short, I would conclude from these studies, and what else I know, that “autism” is a loose connection of people who have certain behavioral/emotional/intellectual characteristics in common, but that this group is extremely heterogeneous and that the causes of these shared behaviors have not been determined, nor has it been determined that such behaviors even HAVE a shared cause.
This is the problem with “diagnosis by checklist.” I don’t mean in any way to suggest or imply that people who fit this description don’t have anything in common, nor that such people gathering together isn’t a great idea (it IS a great idea!), nor that there couldn’t be some biological similarities between a big part of such a group. I’m saying that there is no direct evidence that people so grouped have a neurological problem, have a shared neurological problem, or even have a biological problem at all.
As to “neurodiversity,” my opinion is that the idea that there is some kind of “normal” neurological configuration that can be used as a basis for “neurodiversity” to be determined. I am of the opinion that we’d be far better to consider EVERYONE “neurodiverse” and needing individual, creative interventions that respect our individual rights and needs. Which it sounds like you are making every effort to provide, so WELL DONE!
I agree. There’s no characteristic brain structure or overall neurological difference among autistic people. All we really know is that autistic people tend to have neurological and structural differences in the brain, but the variation in those differences is quite significant, and it’s very dependent on the individual.
Technically, everyone is neurodiverse to some extent, at least in the sense that everyone has different neurology. No one person has identical neurology, but there are common features in most people that are the result of their neurological configuration, such as the ability to socialize efficiently in a typical manner.
What we mean when we say “neurodiverse” is that we have a neurological structure that’s repurposed to perform different tasks than the majority, not necessarily that we merely have neurological differences. “neurotypical” is used to describe those who’s neurology is designed to perform specific tasks, such as to socialise, maintain emotional connections, and to have enhanced intuition, whereas “neurodiverse” is used to describe those who’s neurology is designed for something other than that.
I get that. But your definition is philosophical, not scientific. There is no objective way to distinguish your two groups. It is a judgment call, which I think is why the term “spectrum” was introduced. I have no objection to philosophical definitions per se, I just object to them posing as scientific ones. You have proposed no specific neurological “structural differences” nor presented any evidence of such. The burden of proof falls to those claiming there is some way to distinguish these groups neurologically, and I have seen nothing that meets even a very loose standard of proof. What I hear is that certain people tend to behave in certain ways, and that some people believe these differences are neurological in nature, but no one can show what the difference is. The definition is entirely based on subjective assessments how people act, feel and think (as all psychiatric “diagnoses”) and so falls into the category of philosophy. I see no scientifically valid entity of “autism” that can be distinguished beyond someone’s opinion or assumptions.
Steve, et al:
I feel that the comment that some of this is strictly ‘philosophy’ may not be entirely complete. It can be ‘psychology/psychological’, which may be considered a social science and can incorporate many disciplines. In this case, ‘medical psychology’ might be appropriate. Some of the effort here is to put the studies in a psychiatric context that generally tries to bridge the physical and the mental/social. Psychology can be a subjective confession and deals with opinions and assumptions. If psychologists are honest, they immediately take the subjective nature of their judgments into consideration and try to balance them with what is considered general ‘knowledge’, as well as a healthy amount of doubt and uncertainty. The diversity of subjective perspectives, and what constitutes a consensus of knowledge, are what are so difficult. Knowledge need not be restricted to the physical/natural sciences. However, I agree that it is a slippery slope. The more social, humanistic, and artistic, the more difficult this becomes, as opposed to math and physics. I see biology and physiology/neurology as intermediaries, and research inevitably brings in the biases of subjectivity and methods.
These are my immediate thoughts. Thank you.
I appreciate your thoughtful reply.
I truly have no problem with social sciences, as long as they learn to limit themselves to actual observations and understand the problems of variable control that are so prominent.
Let’s take the “ADHD” diagnosis as a very simple example. We can look at a classroom and say, “Wow, there are some kids who do really well in this classroom, and others who do poorly.” That is an observation. We can say, “A certain subset of those who do poorly seem to have characteristics in common – they have difficulty sitting still, they seek out constant stimulation, they seem impatient with the process, interrupting the teacher and so on, and they don’t like to do exactly as they are told.” These are still legitimate observations.
We stop doing science when we say, “Those kids who don’t do well in the classroom have something wrong with them.” We are now in the realm of judgment and behavioral control. I suppose we could continue with the assumption that behavioral control is our goal, and then scientifically study better ways to control behavior. But that decision, that behavioral control is the goal, is in no way scientific, even in the very loose social sciences sense.
If we REALLY want to be scientific, we’d have to break down the classrooms into groups. We’d have to do backgrounds on the groups to see if the ones who hate it have anything in common, and if the ones who tolerate it have anything in common. We may find that the majority of the tolerant group ALSO hate being there, but simply have more skills to cope with feeling oppressed. But maybe that means THEY are the ones with the problem! “Over-accommodation Disorder” could be attached to them, and we could give them drugs or do behavioral training to make them LESS compliant and tolerant of oppressive environments!
Of course, the question of whether the environment is “oppressive” or not is social and political and not at all scientific, either.
And we could go on, but I think you get the idea. As soon as VALUE JUDGMENTS get involved, we are leaving the path of science. We can observe behavior and even draw conclusions based on these observations, but what we decide these conclusions mean about how we as humans should act is very much outside the realm of science, and always will be.
It is also valuable to recall that science is a subcategory of philosophy. So something can be philosophical within the boundaries of science, but if it is a “mix” of science and higher level philosophy, then it’s really no longer science, strictly speaking.
Thanks for the reply. Yes, the concern about oppressive environments, for example in schools, is definitely an important issue in all this. Institutional, social, physical, psychological, even architectural oppression, stress, compulsion, and fitting in can all influence this subject. The consensus on what constitutes oppression is not only not simple, but in many schools is not even a question that is raised. Everything runs along according to schedule. I find this very relevant in psychiatric hospitals, where the staff and institutional rules are like a machine. When one is in the patient role, it is a position where a resistance to or even simply questioning of an authority is least likely to succeed. They prefer you to submit at every stage, even if that means remaining silent. The same applies when one is a student. Over-accommodation disorder is a way to prevent punishment and going against any grain that is the norm, even if it’s a norm that really should be modified.
Precisely. Asking the question gets you attacked in such institutions. It’s like living in an alcoholic home – certain things are NOT discussed, and those who mention them are punished. Kind of the definition of oppression, in some ways.
For there to be differences in brain activity, there has to be a cause. The most logical conclusion would be that there’s likely differences in connectivity in one way or another, especially when one considers the fact that autistic people almost always present with differences relating to sensory input, which is controlled largely by the nervous system and the brain.
There are probably other causes that could be at play though. What would you propose a possible cause to be if it’s not rooted in neurology to at least some extent? I’m genuinely curious.
I also decided to put in some more time to research this topic, because I’m clearly in need of evidence. The most prevalent results reported physical differences in the brain, and these seem to be the most reliable:
https://pubmed.ncbi.nlm.nih.gov/29145754/ – if I remember correctly, this study reported that some allistic people analysed displayed similar physical differences in the brain, but the overall differences reported are overrepresented in the autistic group.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3787615/ – this study seems more varied; it focuses on genetic differences, brain structure, and potential environmental correlations. However, if I’m interpreting it correctly, it’s not necessarily conclusive for all types of autism.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4688328/ – this study does display physical and activity differences in the brain, but does also mention that some abnormalities are also seen in other conditions, therefore, aren’t necessarily exclusive to autism. Although, it’s evidence nonetheless, and goes into a fair bit of detail.
As you stated, there doesn’t seem to be much evidence on actual neurological differences. Although, it’s something I’ll continue to research, considering that I’ve now developed an obsession with it.
And on the subject of brain differences, do you have any evidence of autistic people not having any differences in brain structure? I’m not asking you to disprove my claims, because that wouldn’t make sense, but I am curious as of to if there’s evidence going against autistic people generally having differences in the brain.
Autism often runs in families a lot of the time too and is largely genetic. What do said genes have an impact on to cause autism then, if it’s not neurological or based on structural differences in the brain? Because clearly, if it runs in a family, something is being altered biologically. Either that, or a faulty set of diagnoses, somehow.
My family, for example, has a history of autistic people and people with high amounts of autistic traits, which implies a clear genetic, therefore, biological component. My family also has a history of ADHD, which is known to often occur alongside ASD, more often than in the general population, and ADHD is known to be primarily genetic and heritable.
Similarly, most of the autistic people I know also have a history of autism in their families. Of course, this isn’t representative of most autistic people, and I don’t intend to imply that it’s supposed to be, but I can personally vouch for a biological component being a factor in at least some cases.
There is evidence for autism’s heritability:
https://www.sciencedirect.com/topics/medicine-and-dentistry/heritability-of-autism – although, the underlying mechanism of said heritability, at least in this article, is shown to be inconsistent, therefore, difficult to accurately measure.
And again, autism is formally classified as a neurodevelopmental condition. “neuro” means “neurological”, although I’m sure you know this. This classification wouldn’t exist if there wasn’t any neurological difference commonly present in autistic brains.
If not neurological or based on differences in the brain, what is it that causes autistic people to have significant difficulty when identifying facial expressions and body language, often having to apply a lot of conscious effort to compensate despite years upon years of social experience, to have significant difficulty in social reciprocity overall, often having to compensate with lots of conscious effort, to have various issues with executive functioning, to have various issues with motor skills, to have unusual intensity in focus on interesting tasks, to be better at recognising patterns, to have better attention to detail, and to have a seemingly impaired working memory, yet relatively intact, and oftentimes superior long-term memory? If not neurology or brain structure, what are other causes?
I mean, what is it that causes us, as autistic people, to quite literally have clinically significant difficulty when trying to understand and utilise body language, facial expressions, and basically every other social cue, including things like sarcasm, metaphor, and other indirect meanings, despite having years of experience in social situations and quite literally working ourselves to the point of depression and anxiety by putting in so much effort to understand these things, whilst simultaneously having relatively intact, and often superior cognitive functioning? What is it that prevents us from developing the social intuition that everyone else seems to possess?
I’m not becoming aggressive or trying to seem like I know it all; I’m curious as of to what you believe the potential causes to be, and am asking questions to better-understand your view.
Also, you seemed to imply before that the autism diagnostic criteria is poor and/or how it’s diagnosed is poor. Can you elaborate on that?
And as I said, we are now getting into philosophy, not science. While stating that “all things have a cause” is pretty solid scientifically, the assumption that cause is always biological is a philosophical one, that is often presented as “scientific” (in fact, people are often accused of being “unscientific” when proposing other philosophical positions), but actually in no way proven by any scientific means, and in all likelihood unprovable by such means. We get into a discussion now of what is the MIND vs. what is the BRAIN. The position you present is a “materialist” position, that all causes must be material in nature, and therefore changes in the mind must be caused by something in the physical universe. Yet there are traditions of thousands of years duration that place the mind as transcending the body but being in charge of running it, and would see the brain as more of a “switchboard” used by the mind/spirit to run the body. Less esoteric ideas include the idea of “emergent properties,” in other words, the physiology of the body creates an effect that then is able to act on the physiology itself. It seems pretty clear to me that humans can do a lot to control their bodies, including their brains. Biofeedback and meditation are two examples. There is also the science of epigenetics to consider, which falls within the purview of materialism, but allows that environmental changes are able to change the way the body works and what genes are expressed or muted or turned off.
So the idea that the brain is the causal factor of all phenomena of the mind is not something I would automatically accept. I have no interest in denying either the very real experience of being a “different” person in a world that ACTS as if there is some “normal” we should aspire to (I am such a person myself, as you might surmise.) I also don’t deny that biology may play a significant role in such differences. I see the problem more in society’s unwillingness to recognize or accommodate to the factual existence of such differences, whether they are obvious or subtle or disguised by the person pretending to be “normal.” I doubt you’d disagree with my last statement, given what you seem to be doing.
So you ask some excellent questions. They are just more philosophical questions than scientific.
As a closing example, let’s suppose for the sake of argument (and I suspect that there is some truth to this) that a certain percentage of the population is biologically predisposed to hate sitting still and is very intolerant of boredom and is constantly seeking stimulation. We put children with these characteristics into a standard classroom, and they act out and get into trouble and are extremely unsuccessful. Is the problem that the child is “too active” and “unable to focus” (even though they seem to focus just fine on things involving big movements and interesting experiences)? Or is the problem that the classroom is too dull and rigid and unable to accommodate the needs of these children?
Not a scientific question. It’s a philosophical one, and a very good one, especially when one makes the scientific observation that children of this personality type do quite well in an open classroom setting where they can set more of their own agenda. We can study these kids in different environments and observe what happens scientifically. But deciding what it means transcends science.
Again, I do really appreciate the work that you’re doing. I’m sure it would have been a big relief to me as a kid to know I wasn’t alone and I wasn’t so “weird” as I thought. I fully support those efforts. I just don’t want to concede that there is some “normal” neurological configuration that “normal” people have and that we need to only accommodate for those who diverge far enough from this purported “norm” to stand out. There are plenty of “normal” kids in any classroom who are in intense pain and hate every minute of their experience, yet are able to act “normal” as a performing seal might in order to keep their masters happy and less dangerous. I was one of those kids. I could pretend to “fit in” and do what was expected of me, but I was miserable for 12 1/2 years of school. Was I really neurologically “normal” because I could accommodate? Was I neurologically “abnormal” because it was painful to accommodate? Or were the adults simply unreasonable to expect children to comply with such an oppressive system?
I vote for #3! But science can’t answer that question for us.
In addition to my previous comment:
After some further research, I came across a study that was more specific in their analysis. More specifically, it compared autistic brains with each other along with neurotypical brains, and found that said autistic brains differed significantly from one another, the neurotypical brains remained relatively similar to each other, and both groups noticeably differed from each other, in terms of brain activity:
https://pubmed.ncbi.nlm.nih.gov/25599222/ – of course, it’s based on the analysis of brain activity as opposed to neurological structure, but it still proves differences in autistic brains nonetheless, even if being autistic isn’t necessarily the cause.
The question isn’t whether “being autistic” is the cause, it’s whether brain alterations are the cause of “being autistic.” It sounds like there is some evidence in a number of spheres that differences in brain operations, aka how the brain is USED by the person running it, between different groups. But we walk down a VERY slippery slope when we assume without scientific evidence that these differences are necessarily structural or causative.
The following link shows how imagination can cause changes in brain imaging that mirror real experiences. This demonstrates the power of the individual to alter his/her own brain operation, which to me tells us that there is no way to causatively link brain images to structure – they are simply different measurements that in most cases have little to nothing to do with each other.
I don’t mean to try and refute that there are people who experience the world differently from the “average” person. I just don’t see at this point any means to objectively distinguish between them. I much prefer to look at it as a human problem – how do we as a society deal with the inevitable differences in needs and skills and preferences that will exist in even the most homogeneous group or community.
My question then, do we throw random brain damaging drugs at “neurotypical”? And why not?
It’s really embarrassing to even talk about scans, as if in some way those primitive tools justify the drugging and “diagnosing” and it’s EXACTLY what the industry wants people to fall in love with. The blinky lights on scans.
It diverts the public from thinking further.
Do kids get lost in the shuffle? you bet. And so do drugged kids.
The ad of the girl that “thanks mom for drugging my adhd”
Is pathetic. SO pathetic. If indeed it’s real, she would not even know if the drugs were any help. Perhaps she would have done even better without them. The brain does not know itself too well.
I know mine doesn’t. But I’m sure psychiatry or a therapist can help me with that.
I agree. Assuming the cause to be biological without any conclusive evidence is a poor argument. I’m not saying that there has to be a cause pertaining to one’s biology, but simply that there has to be a cause, but I did provide evidence of differences in physical brain structure and brain activity.
Of course, as you stated, imagination can change brain activity, therefore, not necessarily providing an accurate measurement of differences in neurology, but the thing with being autistic isn’t that we willingly focus our attention elsewhere, therefore, manipulating brain activity; we generally have clinically significant difficulty in the areas I previously mentioned regardless of the situation at hand, despite trying throughout our entire lives to use different methods and achieve that social intuition everyone else seems to have.
It may very well be the case that many autistic people simply focus attention differently, resulting in differences in brain activity, but you simply can’t rule out that physical brain structure is evidently different in many autistic people when compared to those that are considered neurotypical.
I’m also not sure what you mean by the work I’m doing. I’m doing no work as far as I’m aware. Maybe you’re confusing me with someone else.
And, on the subject of evidence, I also provided evidence on the heritability of autism, showing that autism very often runs in families, which immediately implies a genetic component that alters some biological structures. I believe the evidence I provided also details differences in grey matter (and white matter if I recall correctly). Although, if you’ve already responded to said evidence, and I’m simply misinterpreting your reply, feel free to correct me.
As for more evidence, here’s some that includes dMRI methods, along with other differences in physical structure in the brain:
I have more evidence, but I’ve yet to read through all of it.
What about the fact that more autistic children present with different head sizes than the general population of children do?
What about the fact that people with genetic conditions, such as Fragile X Syndrome, for example, have much higher rates of autism?
It’s almost important to consider what would then make us use our brain differently, because it’s almost certainly not something we tend to do willingly; I don’t willingly decide to have painful sensory sensitivity in regards to specific stimuli, I don’t willingly decide to not notice social cues, I don’t willingly decide to notice patterns in everything, and I certainly don’t willingly decide to have poor motor skills, even in relation to walking — and this isn’t just me, these are characteristic traits of the autistic population. We’re literally required to force cognitive effort to get by socially, trying various methods, whereas most people have a subconscious social intuition that requires little to no effort in application and we just don’t develop that, ever.
And again, sensory sensitivity is known to be controlled by the nervous system and the brain, and autistic people almost always present with heightened sensory sensitivity, often times with it being painful. This is objective, and I very much doubt it’s possible to focus attention so much on certain stimuli to the point of pain.
One may suggest that it’s merely the result of how we’re treated, but we’re treated differently because we’re perceived as abnormal in the first place, so I don’t believe this is necessarily likely. Although, there may be an factor relating to how we’re treated from a very early age, but I see no evidence of such.
You also gave examples of it potentially being a matter of how society is structured. This is what I generally go by; that society is typically structured to be biased towards supporting the majority and neglecting the minority. But that doesn’t dismiss any potential differences in the brain, whether that be neurological or intrinsic differences in brain activity — if anything, these potential differences may simply exacerbate the problems experienced by the individual in an already-neglectful environment.
Anyway, as I said before, there’s plenty of evidence of high heritability rates in autism, along with physical differences in brain structure in my previous reply. Unless this evidence is invalid, it displays that autistic brains do indeed tend to have physical differences at the very least, and that it’s a highly heritable condition, implying a genetic, therefore, biology-altering component.
I’m all up for accepting there to be no valid evidence of general differences in autistic brains. If anything, it simply validates even further that we’re mere variations in the human population with unique strengths and weaknesses, which is great, but from what I can see, and the evidence I’ve provided, these brain differences, even physically, are often present.
I think we’ve both made our points. I’m guessing we’d actually agree closely on what should be done to help people with perceptual or behavioral differences, and I certainly have never claimed in anything I said that biology does NOT impact behavior or perception – I actually said the opposite several times, as I recall.
The only point I am making is that claiming neurological SAMENESS of people who don’t happen to stand out as “different” does not make scientific sense. We have close to zero idea why people act the way they do. All we know is that certain patterns to emerge, and that expecting people to simply change their perceptual or behavioral style because it’s inconvenient for others is rather oppressive. I am encouraging us to focus less on whose brain is more “different,” and more on how we can help people whose behavioral/perceptual/personality styles don’t fit our largely arbitrary social expectations can find their place in our social system. If someone has to have a “diagnosis” or a “spectrum” identity to be considered worthy of special consideration in this regard, we are leaving millions and millions of kids behind just because they happen to be better at adapting to irrational and oppressive conditions than others.
I agree that such claims regarding neurology are useless. This is why I moved onto the topic of physical brain differences and brain activity as evidence, and am remaining neutral on neurological differences. For all we know, autistic people could generally have significant neurological differences, or none at all.
I am, however, more inclined to believe that autistic people are more likely to have what people refer to as “neurotypical” brains, but to certain extremes; significant development in certain areas, whilst there being underdevelopment in others — this or something similar could explain the common enhanced, yet imbalanced intelligence in the autistic population. Of course, this isn’t necessarily proven, and I’m not assuming it to be, but it’s what I’d lean more towards — in actuality, for the time being, I guess we just don’t know, and probably won’t know for a long time considering the variability in the autistic population.
Focusing on adapting for and accepting those that are different is certainly a better approach, because the longer we spend researching certain populations, the less focus there is on actually improving their quality of life, and that’s the most important thing. So, I agree with you there.
It is still quite annoying that me and many other diagnosed autistic people are considered broken in a medical sense, simply because we fail to efficiently adapt to a manmade, majority-biased society. But that’s just how society is, unfortunately; labelling people that struggle as “disordered”, regardless of what causes it — it seems that people just don’t like the idea that the harsh oppressiveness of society isn’t a good thing, and then find ways to push the blame onto things like “disorders”.
And although how neurodiversity is defined and represented may not be based entirely on objectivity, it certainly helps with acceptance to some extent. The fundamental goal of neurodiversity is to promote acceptance.
I just hope that one day, sometime soon, that autistic people and other people that are different can be accepted for who we/they are. There are far too many people out there with unique strengths because of their differences that are simply being pushed aside to maintain a primitive sense of normalcy.
Promoting acceptance of those who don’t automatically “fit in” is among the worthiest of social goals. Psychiatry, unfortunately, appears committed to doing exactly the opposite!
I knew we were in essential agreement!
Isn’t it sad the way the mental health service Almost automatically assume you don’t fit in because there’s something, whatever, endemically wrong with you and exclude the possibility that you might fit in better elsewhere. In fact by informing people you are psychiatrically disabling they deepen any difficulties, add stigma etc, etc,…
Great. I’m glad we agree.
Dittos & kudos to KS FWIW. A courageous statement not designed to garner mass approval.
Some would contend there can be a literal state of “neurodiversity” that bridges (or fuses) the physical (neurology) and the abstract (psychology). As such, as long as there is a physical component this is an argument for “biopsychiatry,” though I also sense that this would be denied. In fact such a fusion is impossible in a 3 dimensional world.
At best it is euphemistic to refer to purported differences in brain structure as “diversity”; should cancers be referred to as examples of “cellular diversity”? (That sounds progressive.) Or am I missing something key?
“At best it is euphemistic to refer to purported differences in brain structure as “diversity”; should cancers be referred to as examples of “cellular diversity”? (That sounds progressive.) Or am I missing something key?”
Assuming autism is primarily neurologically rooted, or at least generally has differences in brain structure, the understanding of neurodiversity is that the neurological structure and/or brain structure of autism isn’t anything “wrong” or “disordered”, and is instead something that has contributed to the success of humanity in the past and is merely a natural variation in the human population that provides unique advantages and disadvantages.
With cancer on the other hand, it’s known to be intrinsically harmful and have no advantage for the person with it, so it’s a rather odd comparison to make.
Cancer is part of the healing process and is a function of the immune system.
WHO is assuming that “autism” is neurologically rooted? If that were the consensus “it” would be seem to be a pathology; otherwise, like the apppendix, “it” would have no functional role in a “modern” human.
What are the current “advantages” of such a condition?
Of course, we also know that science is not a matter for consensus. People have agreed to a lot of “facts” that were scientifically proven false. And still do. Witness psychiatry as a whole.
Fair point. I was more or less referring to cancers that cause significant impairment for the individual and are life threatening without medical intervention.
Anyway, there are a few common characteristics seen in autistic people:
Enhanced attention to detail
Enhanced pattern recognition
Enhanced sensory sensitivity
Enhanced, often intense focus
Enhanced interest intensity
Enhanced memory within the realm of the individuals interests
A significant bias towards logical analysis and evidence-based opinions
A significant bias towards analysis of the environment over people
A lessened tendency to “follow the herd”
Yes, anyone can have these traits, but they’re overrepresented in the autistic population, so we’re essentially designed to possess these traits specifically, at least from what it seems. We’re less socially adept, but intellectually enhanced in various aspects.
I can’t count how many times people have thought I’d be an absolute joy to be around, because my ability to retain significant amounts of information and tendency to logically analyse everything can make me seem unusually intelligent, only to later discover that I’m beyond merely being socially aloof and am rather average intellectually in a general sense.
Autism is also known to be heritable in most cases, and with the highest prevalence in the United States (according to my knowledge) being 5% in boys according to the CDC, it’s likely that autism itself and/or genes linked to the condition confer/conferred some sort of survival advantage.
In fact, autism has been linked to the same genes responsible for high intelligence:
On the subject on autism and intelligence, due to our lack of social intuition, we’re more or less forced to utilise more cognitive effort than most people to simply get by, which could possibly contribute to enhanced intellectual development in some cases. Of course, this is only something I’m theorizing, but I assume the possibility is there nonetheless.
If you’re interested in the subject of autism and potential advantages, you may wish to read through the following articles that theorize autism to be a possible evolutionary development:
So it is possible that “Autism,” whatever that is, is simply a combination of high intelligence and certain personality characteristics? Yet there are plenty of “autistic” people who have lower IQ, correct? So are those people “Austistic”? Or are they something else?
Perhaps we can just go with describing people’s behavior instead of having to slot them into “categories” that limit our ability to see the differences between them?
There are autistic people with average and below-average IQ scores, indeed. However, it’s often said that traditional IQ tests underestimate autistic intelligence, which may be why there are significantly less low IQ autistic people when intelligence is measured via other IQ tests, such as the Raven’s Progressive Matrices:
This may be due to how traditional IQ tests are culturally-biased, whereas tests like the Raven’s Progressive Matrices are like the ICD criteria for autism; a primary focus on raw intellectual ability with little to no cultural bias.
According to the CDC, only 30% of autistic people have a low IQ according to traditional tests. This number has dropped significantly over the years, as the diagnosis of “higher functioning” autistic people is rising more than that of “lower functioning” autistic people.
The 30% statistic is mentioned in one of the autism evolutionary theory articles I provided previously.
I don’t believe autism is primarily characterised by a high IQ, but instead enhanced intelligence in narrowly-focused areas of development, and intellectual traits without above-average intelligence overall.
Although, when talking exclusively about Level 1 autism (“high-functioning” autism), I’d argue that the average intelligence is relatively high overall, but I have no evidence supporting this.
I agree that we should’ve initially described behaviours as opposed to just labelling people and, therefore, placing them in a small box.
However, it’s rather difficult to just eradicate the “autistic” label, because of how we, as autistic people, have integrated it into our identity.
Now, I think it’s more appropriate to broaden the “autistic” label and have it accepted as a mere trait, just like how being black or gay is. Considering how the neurodiversity movement is progressing, I wouldn’t say we’re too far off.
Excellent analogy oldhead.
@KEPLER902 – How can you sustain the belief that ‘autism’ is a genetic condition which ‘runs’ in families? It’s incidence has skyrocketed in recent decades – your chance of earning a diagnosis of autism has climbed a hundred if not a thousand fold in that time, a hundred years ago you had zero chance of such a diagnosis. Our DNA has not changed in that time and our environment, not withstanding the immanent threat of climate catastrophe has got more benign, relatively, for people living in the west. And even if family members share behavioural traits they are more easily learnt than inherited.
Since the discovery of autism, we’ve come a long way. Nowadays, knowledge is better than ever; we’ve gone from believing autism to be “childhood schizophrenia” to understanding it as a unique condition.
Awareness of autistic people has increased dramatically, and there’s significantly more education on what being autistic means and how to identify autistic traits, therefore, leading to higher diagnostic rates.
The diagnostic criteria has also changed a lot from the DSM-III to DSM-V, and even the ICD criteria has changed a fair bit, which would change how autism is diagnosed, and the traits required for a diagnosis, of which have been broadened as time went on.
There is evidence of heritability in autism, but the underlying heritable mechanisms are largely unknown:
Personally, my family has a history of autistic people, but we’re all different from one another. My behaviours, such as adherence to routine and lack of eye contact, were present from a very young age, but these weren’t taught, especially when taking into account the fact that I was raised in a highly-varied and social environment.
Well then, it seems to me that what is really underneath ALL other “mental disorder” is really this amazing discovery of “autism”. I mean does it not make sense that if you are “autistic”, that your ways of coping or adapting would result in all these “mental issues”?
So I guess we could be “autistic” and also have 354 other diagnosis on top of it.
Then we could drug each one, or therapy it. Yes how far we have come to identify “autism” and develop drugs for it. Science and psychiatry really have come a long way.
So have they discovered what the cause of not making regular eye contact is? Like which neurons etc etc?
Would you have been autistic in a different school system?
What if we had a system where only strong muscular bodies were needed? How will medicine approach that?
Hey Sam Science has come along way by leaps and bounds, we witness that all the time, but psychiatry like politics and economics has been rapidly headed in the opposite direction. Humanities social discourse seems to be regressing in this respect!
Being autistic doesn’t often lead to other forms of distress intrinsically. There are various issues we face in life, from sensory issues to social isolation.
However, you’ll find that these issues tend to derive from artificial environments and mindsets others are socially conditioned to possess.
There’s typically nothing intrinsically wrong with being autistic. There’s nothing broken, ill, or disordered about us, nor is it likely that any form of medication for autism will come about for a while, because autism is a highly varied condition that differs dramatically throughout the entire autistic population; we’re all different and no two autistic brains are the same.
Autism is merely a condition of exaggerated focus on one’s environment, and lessened focus on people. There’s nothing any more disordered about this than there is to being gay. This is most likely why the most intelligent people tend to have at least some autistic traits, with many being autistic themselves; their attention is devoted almost entirely to their environment, which results in underdeveloped social skills, yet enhanced intellectual capacity.
To be disordered as an autistic person relies heavily on the acceptance we receive, how much artificial stimuli surrounds us, and what other artificialities we’re forced into. Without all the negatives in these categories, we’re just different people with autistic strengths and weaknesses.
Essentially, put an autistic person in a hunter-gatherer society outside of modern civilisation, and they’ll most likely be accepted as they are with little to no struggle.
There’s just nothing we need to therapy regarding autism or medicate, because most of the issues we face aren’t because we’re autistic.
The only problem is that some people get support, while others get electroshock, and you can find reports of children as young as 3 being put on neuroleptics. I have been put on them in adolescence, and they ruined me. Psychiatrists sometimes diagnose people as autistic after they have been impaired with psychiatric drugs, and it’s typically used to disempower already disenfranchised people.
It’s even worse for abused children; the label just becomes another weapon in the hands of the abuser. It works for some people, corporations (especially tech companies, like Microsoft and Red Hat) are very vocal about hiring neurodiverse people, but like others here have pointed out, it mostly leads to children being put on psychotropics.
“As children age, a variety of behavioral, therapeutic, academic, and often psychopharmacological interventions may be necessary. .. Mental health clinicians can be helpful in supporting discussions of long-term planning, legal guardianship, and reasonable expectations for an individual’s work and day-to-day living plans. .. [M]any individuals with ASD benefit from drug treatment to address a subset of their presenting symptoms or associated psychiatric problems. Risperidone and aripiprazole are atypical antipsychotics that have demonstrated efficacy and are FDA approved for reducing irritability, challenging behaviors, and repetitive behaviors in children with ASD. .. Stimulants can be effective for children with ASD and comorbid ADHD or attention problems. .. Newer drugs are in development. The GABA agonist arbaclofen targets challenging behavioral and social withdrawal, and intranasal oxytocin targets social communication deficits.”
The neurodiversity movement could/should be as active in opposing this as they are in promoting compassion, but in this case they are silent. “There’s just nothing we need to therapy regarding autism or medicate, because most of the issues we face aren’t because we’re autistic.” Those in unfavorable social positions and children have no choice in the matter.
I mostly agree.
I think it’s less of the neurodiversity movement being less active in that sense, but instead that they’re rarely listened to by professionals. We can barely even get people to use identity-first language, despite us having practically screamed for years that this is the type of language most of us prefer.
It takes people to listen to the neurodiversity movement too. There’s only so much one side can do without the other, nor can the movement be generalised, as there are various types with different intentions.
I see you were first given the label of autism when you were eight. Maybe since you were given the label at such a young age, you strongly identify with it and have been finding ways to make peace with it all of these years, as if it somehow defines something essential about who you are. Even when someone is labeled as an adult, he or she might still end up trying to make peace with it and meaning out of it, but I would imagine that the pressure is that much more when it is done to you as a child. It’s sort of like how some adults who were always successful academically may still consider themselves nerds, despite having a lot more going for themselves as adults, because that is how they were labeled as children.
I notice that you differentiate between autism and mental illness. That is understandable. A label of autism sometimes engenders compassion, understanding, and a certain sensitivity to a person as simply having “special needs.” I think most people would appreciate more compassion, understanding, and attention to their special needs, not just people who identify as autistic. Whereas, a label of mental illness can sometimes be really damning. A label like schizophrenia tends to elicit fear and hostility towards the person so labeled. But even a relatively benign label like autism can create discrimination and social exclusion of anyone so labeled. That’s one of the problems with any of those labels. They inevitably boil down to othering some people, usually as inferior in some way.
I had a broken computer and stuck a broken post it note on it to remind me to fix it. Fixed the computer but forgot to remove the note. The next person observing the computer thought it was broken because of the old label on it. The computer worked fine, but the person thought it was broken because of a label.
Then you get to the human factor , if the person believes they are broken/defective from the past judgement. Léolo – fight scene https://www.youtube.com/watch?v=SMgWZ7PUrRY
Thank you for this article. Also, it’s good to know you’re happy. A lot of the people here want to be happy but find themselves in circumstances where that is almost impossible. That you work with so many people with problems and help solve them is fantastic and kudos to you for that.
I think a lot of points you’ve made are fairly typical of a narrative that many people with whatever label (or “diagnosis” to you) has been applied to them. Also, it’s actually similar to the narrative of websites where pro-psychiatry individuals in the role of patients congregate (sometimes they are pro-psychiatry because they have no choice but to be, even if they don’t realise it, because so much of their lives are directly or indirectly in the control of mental health professionals).
But this narrative simply does not work. It simply leads to (metaphorically) outstretched arms with a begging bowl and (literally) revolving door syndrome in hospitals which last for years. And I’m not saying this to belittle you or anyone else, but because I’ve already been in that role. No more.
I understand that formal medicalised behavioural labels can be useful to some individuals to have a shared sense of identity, but I think in some ways it’s also damaging.
In a later section of your article, you stated, “He decides you have Borderline Personality Disorder, with depressive features.”
And what of the people who were first labeled that way (BPD with depressive features) when nothing associated with autism came into the picture at all? They might have a viewpoint similar to yours stating “I have so-and-so problem and instead my doctor labelled me as a schizophrenic”.
In my opinion, this sort of a notion is not helpful, but rather destructive. First of all, I feel ALL formal behavioural labelling is damaging in one way or another.
It very often leads to suspicion or gaslighting of some form of the other when someone gets to know about what labels one has been labeled with. Such behaviour on the part of others leads to even more aberrant (maybe confrontational) behaviour on the part of the labelled individual ending up turning those labels into self-fulfilling prophecies.
Communities and groups are best made primarily in the common interests of upward social mobility, economic, financial and social security. But those based on medicalised behavioural labels? While it may have some positives in terms of being understood, it also simply reinforces those diagnoses and how you’re “supposed to be” if you’re labelled a certain way.
You’d want to get OUT of those roles because even if your intentions behind it are good, it leads you down a path of going further and further down the social ladder and losing control over your own life. Always in a hospital, arguing with a mental health worker about “diagnoses” (which one is appropriate and which one is not), collecting new diagnoses, arguing about why they have written this or that about you, writing letters to them, explaining to people in the public that X or Y stereotype in not true, dissecting this journal paper and that journal paper, being called a scientologist, an anti-vaccine crank, told you’re in denial of your illness, personality disordered, and then ending up in a group with those same problems, and in some cases it ends in suicide. Down, down and down you go.
To date, when I watch podcasts and interviews of general members of the public on YouTube or wherever, everytime someone says “People with X or Y disorder behave in so-and-so way” (sometimes in a pretty negative manner), it sends a tinge of fear through my body. And pro-psychiatry sites and groups attract some of the worst sort of people of that type. Absolute experts at gaslighting and will keep labelling you till you cave into it.
You stated that some of your peers shared useful skills like noise cancelling headphones and weighted blankets. Those achievements are enough. In my humble opinion, there’s no need to bring the blanket label of “autism” into it.
The whole notion of a “broad spectrum” to me is problematic. An individual’s life is not a spectrum. An individual’s life is his own with discrete truths associated with it.
You’ve stated, “When I identify myself as an autistic woman who is whole and happy, I get a lot of people telling me that I can’t possibly be autistic. I don’t fit their stereotyped idea of what that means. I get it everywhere I come out with my diagnosis. I get if from professionals who are paid to know better, and I get it from friends and co-workers. Even new acquaintances love to judge if someone’s autism diagnosis is legitimate.”
I don’t think this is a bad thing, rather it’s a compliment. People might have the view of a child who has severe problems picking up social cues, and behaving in very unwarrantedly destructive ways to people around and they’re implying that you aren’t doing that. Perhaps it’s good to take that in a positive light rather than reinforcing the autism label on yourself/others and stating that you’re on the “spectrum”. Those stereotypes come precisely because of the labelling in the first place, so going down the path of justifying the label is futile and will only cause more pain.
The part that is problematic is then labeling you with another label.
Most of the people in roles of doctors and psychiatrists would never want to be labelled as “schizophrenics” or “autists” or “borderline personalities”. They full well know the implications of that. But even the genuinely well-intentioned ones would put on a smiling and kind face towards those they DO label and give a warm explanation about how it’s normal and there are so many people like you.
Being labelled at a very young age ends up defining a lot of things in your life. Your view of yourself, the people around you, the way people treat you. And then you have the headache of navigating through all that just as you have expressed in your article.
While it’s good to be kind to people with shortcomings of any sort, it’s even better to negate those shortcomings. It’s precisely the kind of things which make us more capable and more in control of our lives without relying on the mercy and charity of others or by letting others define who we are that this entire paradigm removes from people by means of derogatory and stigmatising labels, recording behaviour in files kept under lock-and-key (which you have no control over) like they’re lab rats and ultimately leading them down the path of incapability or keeping them in those roles. There is a lot of artificially maintained disability when it comes to psychiatry and psychology. A person’s original incapabilities are different than those which come as a result of the “help” they receive.
Also, calling people “peers” does not make them peers. Just see what kind of roles “peers” and “activists” with token jobs end up in and how they get treated.
To me, the best way I’ve found is to stay as far away from behavioural labelling, the behavioural professions, and sorry to say, but even patient populations and families that simply drag you deeper and deeper into the pit of this hell-hole.
If it suits you, by all means have debates about “over-diagnosis” or “under-diagnosis” (both depend on whether you agree such labels are useful or destructive in the first place), fMRIs this and MRIs that, studies this and that.
I’d rather focus on making money, enjoying life with people who actually care about me, achieving better things and putting an end to all this in my life.
Very well said.
I have a “schizophrenia” diagnosis, or schizo-effective or something like that. What I’ve learned is that a part of my mind simply will spill out scenarios, just like in a dream, that are trying to tell me what’s going on, especially when I’m in a situation where I wasn’t encouraged to question what’s going on. Over the years I’ve learned to understand that language, and that IS what it is: a legitimate language, like imagination is. I could say that would I drink too much coffee or smoke cigarettes this might lead to a “psychotic” break, but that’s not what it’s about, it’s that my mind is trying to communicate something, and it’s actually the “psychotic” break that would tell me how to take care of myself, would I be allowed to learn the language, to understand it, to see it for what it is, despite that “society” doesn’t want its statistical based norms and consensual reality deportment challenged to such a degree (both are terms I picked up that are used as a means towards diagnosis). And when the feelings one wasn’t allowed to express consciously are allowed to have a subconscious language that’s legitimate than one is better able to take care of oneself, even better than what’s considered “normal.” Just not drinking that much coffee or not smoking cigarettes isn’t going to magically give legroom to the feelings, experiences, insights and other unconscious motives that needed expression; although realizing what I was resorting to because those feelings had become uncomfortable given the lack of acceptance in my environment, that acknowledges the feelings rather than a reaction to non acceptance as being “bad.”
THAT said, I’m not going to say that “schizophrenia” is under-diagnosed, because I’ve come to terms with it, and know of others who have. “Schizophrenia” is a false narrative, stating that’s it’s a biological disease, and further more when the “treatment” is scientifically verifiable as something that causes biological disease, something the alleged disease can’t be pinned down to be causing, and when there IS a biological cause that’s truly medical causing distress that causes trauma that causes “symptoms” of “schizophrenia” this often being overlooked to promote the brain disabling “treatment” that’s said to be needed, and when most “treatments” of “schizophrenia” correlate with a spike in the “condition,” or rather a spike in mislabeling it, not treating it for what it is, causing loss of life, disability, more societal phobia, more stigma, a suppression of alternative methods that do correlate with healing and understanding, and empathy, and compassion that’s true rather than patronizing; given all of that and more, I really don’t think that saying that “Schizophrenia” isn’t “over-diagnosed” is going to support seeing it for what it truly is, would it be anything at all. Not even when I see an extreme lack in society of understanding imagination, dreams, the language of the subconscious and the innate part of being human that expresses itself such.
And I don’t see that an “Autism” diagnosis is much different at all. There are a whole plethora of causes that are suppressed, when they don’t fit the mainstream medical model, there are people that can relate to “Autism” in a way that relates to the person rather than to symptoms that have to be eradicated rather than understood and related to, and the use of psychiatric medications for Autism can only be leading to the same problems (and lies, as if it’s treating a valid chemical imbalance rather than causing one and causing biological disease in the meantime)…
To be really radical and confrontative about it, it’s like saying that the F word for homosexuals or the N word for those of another race are not over-diagnosed, as if we are dealing with a valid diagnosis to begin with. Psychiatric diagnosis in many ways fall under hate speech, that’s simply the truth. How that can be convoluted with stating that it’s not over-diagnosed, when people point out it’s become what it has (an easy target)? And when one is offered another diagnosis instead, this only points out how ridiculous diagnosis are, it doesn’t make ANY at all statement regarding the validity of another “diagnosis.”
“Schizophrenia” is a myth. I fail to see how “autism” is any different. And yes, psychiatric labels are basically hate speech.
Since the topic has come up for actually reading the article, which I had, but went back to look closer, and something I might have wanted to have been left where it might not have jumped out, did do that. From reading the article. Again.
“There’s a lot of criticism flung at both the Neurodiversity movement and the Mad Pride movement that we are bad for people who are called low functioning. I call bullshit on that. I think the real threat is that we’re talking about the so-called low functioning people like they are peers. We’re talking about them and us as if there is no “them and us,” just us. In short, we’re interacting with people as if they are just that—people.”
I don’t believe that those getting the peer support, from where it’s given, really can be guaranteed to be listened to, completely. Including them in and stating you’re seeing them as human might come across as heroic, but this could be in correlation with causing low functioning?
As long as you see yourself as disabled, get “treatment” for it. Call yourself neurodivergent, promote this as “mad pride,” then it’s a whole group of “us” rather than low functioning people, when in reality there’s quite a bit of correlation with exactly that causing disability, thus low functioning.
And I question what “neuro” has to do with it?
Someone that’s brainwashed (insecure, needs to fit in to feel they are valid) and sends such signals through his nerves (which are there just to be there, whether you use them for this or for that), with the consequent effect, can call himself “neuro” divergent, as well. But someone who’s healthy, doesn’t strain his nerves, they’re not “divergent” enough, and yes, I’m really saying that perhaps people with a “diagnosis” might have, initially more healthy nerves than those doing the diagnosing. Which is what was going on before it was supposed to be from the “nerves” and thus could be called “neuro-divergent” thanks to that they’re supposed to want to be somewhat “normal” or fit in; which already isn’t normal, unless that means abnormal use of nerves (because the majority strain it (nerves) in an abnormal manner: thus abnormal straining of nerves is normal). See, it’s marvelously circular.
Make sure that divergent part of yourself is straining itself to have something to say, and fit in with what says you’re saying something, and then it’s normally abnormal: the good fight, no pain no gain.
Neither do I find it out of place to mention – again – that psychiatric treatment shows more to be putting strain on the nerves than to….
To have such strange driving laws, or guards on how one pays attention to what one is doing, to cause enough accidents that there are many cars with dents, and then start talking about body-divergent cars, and group them all together (also causing more accidents, in fact even a whole spike in them); and say you’ve made a movement about divergent car bodies; this DOES leave out the rather strange laws and “guards” on behavior that lead to all of that. Why would that be?
“To be disordered as an autistic person relies heavily on the acceptance we receive, how much artificial stimuli surrounds us, and what other artificialities we’re forced into. Without all the negatives in these categories, we’re just different people with autistic strengths and weaknesses.
Essentially, put an autistic person in a hunter-gatherer society outside of modern civilisation, and they’ll most likely be accepted as they are with little to no struggle.”
Put anyone in less stressful situations and they’ll most likely not struggle. We can suggest that those who struggle are not disordered, but that the disorder around them is the cause of struggle.
Well, yes, but my point is that our difficulties tend to derive from artificial sources. You know… Things that humans aren’t necessarily made for, but instead simply adapt to.
This then implies that being autistic isn’t disordered intrinsically, but that the environment makes us disordered. Just like how forcing a cat into a room blasting heavy metal music is likely to cause distress, but there’s nothing wrong with the cat.
Torpid, thanks for the comment.
Your comment is precisely why it is of utmost importance to drop these stupid
The biggest lie is that we need them for billing.
We can write a number beside “This child needs extra support”, “his home situation needs inhome support” “this child needs to get free access to mountain climbing”…..etc etc etc.
If we need “professionals” to declare “legitimately” on paper, on what a child is contending with and what services he would benefit by, the “reasons” are many and unique for every single child. The real reason for “billing codes” based on diagnosis is, number one, we need not change anything as a society and number two, it keeps the replacement for actual understanding and care in the hands of psychiatry and pharma.
It is the governments keeping things as they were because peasants should really never be in the position of power.
For me, the big question is this – Is “autism”/”ASD” good science?
A number of sources convince me the answer is “No”. Sami Timimi, Neil Gardner and Brian McCabe’s 2010 book “The Myth of Autism” – summarised eloquently by Timimi’s 2011 letter to the editors of the BMJ, “Autism is not a scientifically valid or clinically useful diagnosis”; Lynn Waterhouse’s 2013 book “Rethinking Autism: Variation and Complexity”; the 2016 paper she co-authored with Eric London and Christopher Gillberg, “ASD Validity”, and also their 2017 letter to the editors of the journal Autism Research, “The ASD diagnosis has blocked the discovery of valid biological variation in neurodevelopmental social impairment”; Kuskhi et al’s 2019 paper “Examining overlap and homogeneity in ASD, ADHD, and OCD: a data-driven, diagnosis-agnostic approach”, among others.
Maybe you like “autism” as a (sub)cultural identity for yourself? Well, if instead of being science, it is simply a cultural identity, then we all have the right to choose to adopt whichever culture we want. But other people, who don’t like that culture, and don’t want it for themselves, and/or don’t want it for their children – that is just as legitimate. (Of course, when the children grow up, they can decide for themselves, and may decide differently from their parents – but until then, it is up to each family to decide what (sub)culture(s) their children will be raised in.)
Some (sub)cultures may be beneficial, others may be harmful. Of course, the balance of benefits and harms posed by a particular (sub)culture may vary for different people, situations, times and places. Obviously, you think “autism” is overall beneficial. Other people don’t agree – going back to the book “The Myth of Autism”, Neil Gardner recounts in it how his life actually got better when he stopped identifying with the label of “Aspergers syndrome”, which is part of why he (and his coauthors) reach the conclusion that the harms outweigh the benefits. But I appreciate your life experiences must be different from his.