Agreed. I have a friend who has been autistic their entire life, but was only acknowledged/diagnosed in the past little while, in their 30's. Back when they were a little kid, it was interpreted as just being a challenging/picky/quirky child, nothing "diagnosis-worthy". If the medical system and society better understood autism back then, it would have been noticed and diagnosed back then. I have heard the same approximate story over and over.
That’s disputed; another point of view is that “autism” is a label and we’ve increased the scope of that label to cover a lot of things which in the past were either given different labels or no label at all. There are a number of voices in the academic/professional community questioning the great and growing breadth of the “autism” label and the flimsiness of the scientific justification for its expansion (people such as Laurent Mottron, Lynn Waterhouse, Allen Frances)
This. I think the problem is simply we're over-diagnosing autism. Basically borderline people would've been considered normal in the past, but are now considered autistic. Frankly, the entirety of symptoms involved in diagnosis sounds subject to a person's opinion of what people's behavior should be vs shouldn't be. Since this line is hard for everyone to agree on, we've come up with degrees of autism, like "high functioning" autism such as Asperger's syndrome. I'd argue, it's only when it's obvious (i.e. the person is largely dependent) while having said symptoms, that they're autistic... Just because someone behave's abnormally socially, has peculiar interests, and/or has delayed abilities (unless extreme), isn't sufficient IMO. Additionally, two different doctors may end up giving different diagnoses.
Autism (and ASD) should really not be seen as this essentialist "yes or no".
There are degrees to which people, considered autistic or not by your favorite arbitrary standard, exhibit autistic traits. And those traits are not strictly inherently better or worse than neurotypical traits.
The standard for consideration as disorder should be the same as with most psychiatric disorders: Not mere presence, but causing issues that need support.
But at the same time, the people that are doing fine with autistic traits are no less autistic.
(Also, Asperger's has ceased existing a while ago)
> But at the same time, the people that are doing fine with autistic traits are no less autistic.
I’d question that statement. People with BAP (broad autism phenotype) have autistic traits and are doing fine with them, but by definition are “less autistic” than people with ASD. A lot of people with other psychiatric disorders such as schizophrenia, can have significant autistic traits as symptoms of that other disorder (the symptomatic overlap between ASD and schizophrenia is much larger than many people appreciate, although it is believed that the similar symptoms nonetheless are caused by rather different processes) and obviously are not “doing fine”, but nonetheless are in a very real sense “less autistic” than a person with an actual ASD diagnosis
> (Also, Asperger's has ceased existing a while ago)
That’s not really true; the DSM-IV still exists, and professionals are still free to use it if they wish. Our son’s psychiatrist told me that he still sometimes gives children DSM-IV Asperger’s diagnoses if the parents feel particularly uncomfortable with the label of “autism” inherent in DSM-5 ASD.
> Just because someone behave's abnormally socially, has peculiar interests, and/or has delayed abilities (unless extreme), isn't sufficient IMO.
Then it's a good thing that this is absolutely not sufficient to declare someone autistic (even "high functioning", although this kind of categorization is frowned upon these days) even now. Those are just some of possible externally visible symptoms.
I and many other autistic people would strongly disagree. Neurotypical vs ASD isn't some gradient like you seem to think, it's much bigger, clearer wall between us.
I am one of those that you wouldn't diagnose autistic, but in reality me and my thoughts are much much much closer to the ones you would than neurotypicals. I wasn't diagnosed as a kid, partly because autism wasn't diagnosed at least in my country when I was born, partly because even though it was obvious to everyone how different I was my parents tried to pretend I'm just a normal kid. And partly because with time I honed my high quality human emulator to the perfection so at some point I could play that almost-"normal" kid part that they and society wanted from me.
Doesn't mean I didn't constantly feel there's been a mistake, I've been born on wrong planet, in middle of different species that doesn't understand me and which I don't understand. Absolutely nothing about the world made sense, life was hard and strange even if I was extremely good at pretending it isn't. It all changed when I found out and found others like me. Nowadays I'd be diagnosed at two years old, and my life would have been so much easier. I wouldn't have the need to pretend (or mask as we call it) as much, which is a HUGE constant stress. I could understand the world and myself much better, and adjust my life knowing better why and how I'm different. I feel like I could have grown up to be much less of a broken person. There are millions and millions like me, many of whom still don't know and are thinking what is going on in this world. They should be diagnosed as early as possible so they could start enjoying life like I have in much healthier way after finding out.
It's not really surprising that it was - and is - underdiagnosed and we're now finding more cases, as not that long time ago we didn't really diagnose it at all, and after that we only diagnosed the minority of cases who couldn't come up with an acceptable human emulator.
And because the mental image we have of autism is so wrong. I spent decades trying to find people like me, disorders that would explain the things. I gave up, thinking I'm unique. But my mental image was wrong also, so I didn't really give it enough thought - autism was a list of symptoms on wikipedia page and Rainman - that's not me, it's just that my brain and thinking is completely different and nobody understands, I can't even tell anyone because it's impossible to explain. It wasn't until I randomly read an article written by autistic person, and like 1/4 way through it I knew I found my kind - before that nobody understood, and that article could have been word to word written by me, except he knew the reasons behind it.
> I've been born on wrong planet, in middle of different species that doesn't understand me and which I don't understand. Absolutely nothing about the world made sense, life was hard and strange even if I was extremely good at pretending it isn't.
Is it only "autistic" people who feel that way? Could it be, that there are people out there who don't meet the diagnostic criteria for "autism"/"ASD"/etc – either some other psychiatric diagnosis fits them better, or none at all – yet they feel much the same way? (What about people on the schizophrenia spectrum, especially those at the "milder" end of it, such as those with schizoid or schizotypal personality disorders–have you ever thought that maybe some of them feel this way too? But most of them would not be "autistic", in that ASD would be the wrong diagnosis for them.) Conversely, isn't it possible that there are people actually diagnosed with autism/Aspergers/ASD/etc who don't feel that way? If "feeling that way" and "autism" can exist independently of each other, maybe there is no necessary connection between the two?
If one feels like one was "born on wrong planet", is that because there is something fundamentally different about you? Or maybe you were raised in an unsupportive environment – there are lots of ways environments could be more supportive without having to structure that support around a diagnostic label – and if you grew up in a more supportive environment you would have felt less like that? Maybe, if the events of your life had taken a somewhat different turn, you might have grown up in a more supportive environment purely perchance, even if nobody had been consciously trying to be more supportive.
Also, isn't it possible that those kinds of thoughts of estrangement and alienation ("born on the wrong planet") can be an idea which enters into one's mind – generally a mind which has some genuine things to feel upset about, and whose upset is not being properly recognised or acknowledged by others; yet still maybe those things are nonetheless insufficient to logically entail that particular statement – but then the idea takes hold, and it grows, and puts down roots, and becomes a lens through which future experiences are interpreted, constantly finding more confirmation for itself – maybe, even at times, turning into a self-fulfilling prophecy? In which case – maybe the real problem is that very thought, and a possible solution is to challenge and question and doubt it, rather than seeking out a community who will affirm and encourage it?
> It all changed when I found out and found others like me.
I have a lot of autistic traits – I strongly suspect that if I wanted the diagnosis, there are professionals out there who would give it to me. I've never thought I was "born on the wrong planet" though – to me that just seems such a bizarre thought. My response to our son's ASD diagnosis was basically "What do you mean X and Y and Z are 'symptoms of autism'? I did stuff like that all the time as a child, I even still do as an adult". I definitely don't want our son growing up believing he was "born on the wrong planet". He's really no more "autistic" than his father is – and his little sister has lots of "autistic traits" too, and I can even see many in his mother (although she really doesn't like it when I say that.) Rather than saying our children have "autism", I think it is more appropriate to say that they are the children of their parents, whose problems are largely continuous with (and inherited from) those of both their parents, and their behaviour is fundamentally normal and even typical for children who have the kind of parents which they have. And they were born on the only planet on which they could ever have been born–this is their planet, they belong here, they may sometimes struggle with fitting in with the crowd but so do heaps of other people (their parents included)–and I hate to think some people might try to plant in their minds the idea that they don't belong on this planet, and if anyone tries I hope they might listen to me and reject it.
Despite my own autistic traits, I don't really like the "autistic community" – it seems to me to be filled with people who put immense faith (at times even verging on religious) in a diagnostic construct which is rather dubious from a scientific viewpoint–but they seem to (by and large) not know that, and even to not want to know that. Many of them express a great deal of resistance presented with the idea that this diagnostic construct on which they've chosen to build their personal identity might be bad science or even a harmful cultural construct – I am left with the impression that many of them don't even want to hear the arguments against it, they already know the arguments must false before they've even heard them–much as many religious people don't even need to hear the arguments against their religion's doctrines in order to know their fallaciousness.
>Many of them express a great deal of resistance presented with the idea that this diagnostic construct on which they've chosen to build their personal identity might be bad science or even a harmful cultural construct – I am left with the impression that many of them don't even want to hear the arguments against it, they already know the arguments must false before they've even heard them–much as many religious people don't even need to hear the arguments against their religion's doctrines in order to know their fallaciousness.
I think you're misreading the situation. I don't know anyone who is particularly happy about how inconsistent the experience of trying to get diagnosed with autism (particularly in adulthood) is.
The strict defensiveness is simply a result of the existence of exterminationist parties. Many autistic people are happy with the way they are, and just want some support to exist in a society that expects differently from them. But the likes of Autism Speaks keep framing autism as a severe disorder, mostly defined through the suffering of parents, that we need to "cure". Even if many people do not want to be cured.
I'm not diagnosed with ASD, despite having a bunch of autistic traits and being in two groups that are seeing much higher rates of ASD (ADHD, trans), but I know the exact same problem with trans people. For how small of a population trans people are, the evidence for affirmation being the best way forward is overwhelming, and yet there are constant attacks on trans healthcare that stem more from an extension of anti-gay republican partisanship, the more fascist (in the "every enemy needs to be the worst threat to civilization possible" way) part of has started to call us "groomers" now.
Of course we'll have a hard time differentiating between good faith criticism and and the constant barrage of exterminationist thought veiled in "just asking questions".
This is also the big reason a lot of autism and trans advocates heavily oppose researching autism and transness within genetics. Because it looks like a precursor to elimination.
> The strict defensiveness is simply a result of the existence of exterminationist parties. Many autistic people are happy with the way they are, and just want some support to exist in a society that expects differently from them. But the likes of Autism Speaks keep framing autism as a severe disorder, mostly defined through the suffering of parents, that we need to "cure". Even if many people do not want to be cured.
"Autism Speaks" is a US organisation, and I'm not in the US, so the debate over them doesn't have a lot of relevance to me personally. That said, while I disagree with many of their beliefs, and I don't doubt they cause some harm (albeit unintended rather than intentionally), I think a lot of the rhetoric levied against them (such as "exterminationist") is overwrought.
I think a lot of the problem is a problem with "autism"/"ASD" itself – throwing together into one bucket two very different groups of people – one group is people who have average-or-greater IQs (sometimes even with significant giftedness), albeit combined with various social and emotional problems, anxiety, topical obsessions, sensory sensitivities, etc. Many of these people can realistically aim for many of the same goals as the average "neurotypical" person (education, a successful career, a partner/spouse, children, home ownership, etc), even if they are likely to experience certain bumps on the road which the average person might not. Some may benefit from some extra help, but many will achieve a lot even without it. Then there is another group: people with significant, sometimes even profound, intellectual disability; many of whom are non-verbal; some of whom have significant problems with self-injury or physical violence towards their carers. Goals such as a university degree, a professional career, marriage, children, which many people in the first group manage to achieve, are totally unrealistic for people in this second group. We've given both groups of people the same label, "autism", despite the fact they have very little in common and clearly "don't have the same thing". (Of course, there is also a third group of people who don't really belong to either, but are somewhere in-between the two.)
Organisations such as Autism Speaks are dominated by parents of children who belong to the second group, those organisations which vehemently criticise them are run by people who belong to the first, who (in my view) are misinterpreting statements about the other "autism" as statements about their own. And, for all their concern about the harms caused by groups like Autism Speaks, don't want to hear about the very real, albeit somewhat different, harms to which they and their organisations contribute.
> but I know the exact same problem with trans people
I think the parallel you are trying to draw here is very questionable. I'm not aware of any ideological or personal overlap between Autism Speaks and the kinds of social/religious conservative or radical feminist groups which are involved in controversies over trans rights/equality. On the contrary, if you look at Autism Speaks' own website, they present themselves as LGBTQ-friendly: https://www.autismspeaks.org/lgbtq-information-and-resources
> This is also the big reason a lot of autism and trans advocates heavily oppose researching autism and transness within genetics. Because it looks like a precursor to elimination.
That fear seems to me to be grounded in ignorance of the actual state of autism genetics research. For one thing, most researchers don't believe that ASD actually exists at the level of the genome. "ASD" is really a kitchen sink into which we've thrown a whole bunch of unrelated and poorly understood conditions, and the eventual outcome of improving our understanding of the genetics is very likely going to be the abolition of "ASD" and its replacement with a bunch of more specific concepts with a much better genetic basis. Also, the DSM-5 boundaries between different conditions (such as ASD, ADHD, OCD, etc) likely don't exist at the genetic level – the same genetic variant might increase the odds of all three of ASD, ADHD and OCD, and which (if any) of them you actually develop may be determined by interactions with other genes, non-genetic environmental factors (whether biological or psychosocial), or even just random chance. In other words, you can't genetically eliminate ASD, because genetically it doesn't exist to be eliminated.
You might be able to genetically eliminate certain specific forms of syndromic ASD–aka "ASD due to a known genetic condition", to use the terminology of the DSM-5; which most people with ASD don't have, most cases of ASD are non-syndromic: a few non-syndromic cases may actually be undiscovered syndromes but the vast majority likely have highly multifactorial origins which rules them out of the "syndromic" category. Some even argue that syndromic ASD shouldn't be counted as ASD, but rather as the syndrome, and we should only consider non-syndromic ASD to be ASD. If gene therapy could be used to reduce some of the disabling symptoms of Fragile X syndrome (one of the most common types of syndromic ASD–not everyone with FXS meets the diagnostic criteria for ASD, but 15-60% do, with that wide variation in diagnosis rates mostly due to differences in ASD diagnostic practices), such as intellectual disability, seizures and early onset dementia–what's wrong with that? FXS, as one of the best understood genetic causes of intellectual disability, is also the target of significant drug development efforts, which doesn't directly change the genetic mutation, but attempts to counteract its downstream biological consequences. Is it wrong to try to develop drugs to boost the IQ of intellectually disabled people?
Similarly, there appears to be some genetic contribution to transness, but all the research I've seen suggests its genetics are diffuse, and you can't use genetic manipulation to eliminate a genetically diffuse condition–once again, a fear which seems to be grounded in ignorance of the actual state of genetics research. (Also, whether and to what extent transness and homosexuality/bisexuality are distinct at the genetic level is an open research question.)
> We've given both groups of people the same label, "autism", despite the fact they have very little in common and clearly "don't have the same thing".
I'm not sure it's so clear. I've been lucky to be surrounded by people similar to me for a big chunk of my life which significantly reduced the feeling of "not being understood" or "from a different planet" and I don't have much trouble passing as a regular person, but in a severe meltdown I can still shut down and downgrade into something akin of that non-verbal kind of autism for some time. As far as I know, that's not how neurotypical people react to intense stress at all.
> but in a severe meltdown I can still shut down and downgrade into something akin of that non-verbal kind of autism for some time. As far as I know, that's not how neurotypical people react to intense stress at all.
I'm very sceptical of the existence of "neurotypical" people, but I think speechlessness, difficulties in processing verbal information, etc, are actually quite common experiences when under extreme stress, and many people who would never be diagnosed with ASD respond similarly to how you say you sometimes do. I don't think similarities between how some people act on those occasions when they are overwhelmed - whether they are overwhelmed rarely or frequently – and how other people act 100% of the time, really have much significance.
> speechlessness, difficulties in processing verbal information
I don't think these words even begin to scratch the surface of the experience I'm talking about.
> I don't think similarities between how some people act on those occasions when they are overwhelmed - whether they are overwhelmed rarely or frequently – and how other people act 100% of the time, really have much significance.
It's very significant. Among other things, autism is a lot about what, why and how fast makes you feel overwhelmed (and sensory issues are just tiny little part of it). Learning how to identify when you're starting to get overwhelmed and how to cope with resulting meltdown is important part of therapy. As you noted, the word "autism" describes a pretty broad phenotype, but there are common patterns that simply don't apply to non-autistic majority, and which vary in their intensity across individuals. When everyday interaction makes you overwhelmed already, the difference between "those occasions" and "100% of the time" is not very sharp.
What you say is not true of everyone who meets the DSM-5 diagnostic criteria for ASD–"meltdowns", or "what, why and how fast makes you feel overwhelmed" are not part of those criteria–so it is possible to have ASD (per DSM-5) yet not have those symptoms, and indeed there are people out there just like that.
Conversely, there are people for whom what you say is very true, but who don't meet the diagnostic criteria for DSM-5 ASD, and hence officially don't "have autism". People with anxiety disorders, panic disorder, OCD, etc, can have very similar (if not identical) experiences, yet they don't have the right set of other symptoms to meet the DSM-5 criteria for ASD.
I get the impression you are defining "autism" anecdotally, based on your own personal experiences and those of others you know, or based on popular information sources (as opposed to the research literature). When you define it that way, you may actually be talking about a rather different construct from what the DSM-5 is talking about.
> I think the parallel you are trying to draw here is very questionable.
The parallel is that both groups are unduely pathologized in the wrong way (not wanting to be healed, but needing support) and have groups that frame their exterminationist thought though that pathologization. Oh, and conversion therapy is advocated for either, except for ASD we called it ABA.
> That fear seems to me to be grounded in ignorance of the actual state of autism genetics research.
Ultimately, it's the thought that counts. It also plays into essentializing either too much. Just as ASD is a set of often interlinking but inconsistently related symptoms ("kitchen sink", as you said), being trans likely has genetic, neurological, environmental and even sociological component that are likely responsible in different quantities for different people.
The anxiety also lies in a precedent for finding the true™ cause and dismissing all who do not fit this model. Even if a research paper claiming to have "found the cause for autism/transness" would have a very long list of caveats and limitations and mark itself as early exporatory research, you know someone would absolutely weaponize it for their culture war.
You seem to put a lot on weight on me feeling born on a wrong planet, but it's only a thing I thought because of all the massive differences I noticed compared to all of the other people I ever met, all the way from the way I think to small traits I have. As I didn't think it's very likely that I should be that way and nobody else on this planet is, so it felt like something had gone really wrong. Had I been diagnosed as a kid like your son I obviously would not have felt that way, I'd know the real reason for it and that I'm not the only one. The place where I was born did probably affect it, if not in other ways maybe at least I would have met other open autistic people earlier, but in my town mentally different people were a shame to the family to be hidden and not talked about, and good masking wasn't really optional if you wanted to try to be a part of the community.
I don't see those differences compared to other autistic people. I always thought what kind of people they'd be if I were to find others like me, and in the end the similarities surprised me, I always thought we'd still have bigger differences but now I see so much more common between us than I ever expected. And like seba_dos1 said, overwhelm me too much (which there are multiple ways to do, all similar to other autists I've met) and I get to similar state as non-verbals - extreme trouble processing speech as well as speaking, robotic movement, feels like my brain just doesn't work.
The diagnosis itself has changed a lot (retiring Aspergers, changing it to "ASD") to account for this though, and I'd generally say that having more awareness of how people deviate from neurotpicallity is a good thing.
If you see it purely as a disorder (and thus a bad thing) maybe you have an interest in continued underdiagnosis, but many people now see autism as different, but not strictly worse or better.
Laurent Mottron believes that the original narrow view of autism had some genuine scientific value, but DSM-5 ASD has broadened the concept to the point that it has become scientifically meaningless. He presents the idea of a “spectrum” as essentially taking a wrong turn, and he argues the only way to get autism research back on track is to move away from the idea of a “spectrum” and return to a focus on “prototypical” autism
Lynn Waterhouse goes further - she believes that even the original narrower concept of “autism” is a failed scientific hypothesis, and the best way forward is to drop the concept of “autism” entirely (and related concepts such as ASD, Asperger’s and PDD-NOS), and look for alternative constructs to replace it with (her tentative proposal is “phenotypes of neurodevelopmental social impairment”)
Allen Frances has said that (in hindsight) he made a big mistake by agreeing to put Asperger’s in the DSM-IV. He says it was sold to him as a very rare disorder and he was shocked to see how frequently it came to be diagnosed. And he’s said that DSM-5 ASD is “even worse” than DSM-IV Asperger’s. (Like Mottron, unlike Waterhouse, he has no objection to DSM-III/IV autistic disorder; Mottron is less negative on DSM-IV Asperger’s than Frances, but I suspect there is actually less distance between them in practice on that issue than a cursory reading of their public statements might suggest.)
While they don’t agree with each other in all the details, what they all have in common, is a critical attitude towards contemporary mainstream diagnostic practices - maybe I’m misunderstanding you, but your response sounded to me like an attempt to harmonise those criticisms away
> I'd generally say that having more awareness of how people deviate from neurotpicallity is a good thing.
I think “neurotypicality” is a myth. Nobody is “neurotypical”. As the English child psychiatrist Sami Timimi says, “we are all, all humanity, neurodiverse”.
It pains me as a psychiatrist to say this, but as things stand I would recommend that you avoid seeing a psychiatrist. I know may great psychiatrists, but without personal recommendation, given the nature of current dominant models, you are putting your loved one in danger of being prescribed medications that may lead to some short term gain at the expense of long term enslavement to a 'chronic' disease model, addiction to difficult to come off meds and lack of empowerment to take control of finding a path for their own recovery.
