And yes I know there is a spectrum of autism from severe to not as severe, but when someone is as high functioning as this does the word have any meaning anymore?
There are large variations in what different autistic people are capable of, and (e.g.) whether they have intellectual disabilities. The writer might be considered high-functioning by a professional, but it has clearly impacted their life. To call their autism "incredibly mild" sounds dismissive of their experiences.
Full disclosure: I'm "high-functioning" autistic too and can associate so much with their account.
> And yes I know there is a spectrum of autism from severe to not as severe, but when someone is as high functioning as this does the word have any meaning anymore?
I wanted to reply to this edit. In this post is someone who struggled to function at a dinner with potential friends, and reverted to clients at a strip club because at least that can be rehearsed.
I refuse to judge the author; I think they've done amazingly. But having this label may empower them and help them be more in control of their life. The word has meaning.
It certainly does, and although the wait lists are long here in NL, I can still recommend people who suspect they have autism to investigate it (via professionals). Its been roughly a 10 months ago since I had my diagnosis, and I learned so much ever since:
* My partner (then undiagnosed) went to a group of partners of ASDers to learn more about how I experienced the world. This led her to believe she also has ASD (recently confirmed).
* I learned all the things related to what makes ASD different from NTs such as Theory of Mind.
* I met fellow ASDers, learned their background, their strong and weak traits, and was able to observe them as well.
* I did a mindfulness course specifically for people with autism.
* We, a couple both diagnosed with autism, get help to deal with our baby so she can grow up healthy in this NT world with two autistic parents (I'm terrible at reading her body language...)
* There's more in development but I'll keep my mouth shut until it's been done & succeeded.
All of the above thanks to the fantastic healthcare system in The Netherlands. God, I love my country, I'm so blessed being born here.
EDIT: A lot of women (like my partner) end up being undiagnosed. Women are trained into a certain role in society which isn't typically masculine-autistic. They're forced to learn to mimic, act, etc to fit the feminine role.
At least her son was diagnosed a lot earlier, he's now getting medication and extra classes to catch up on about a year of falling behind at school.
My GF has an ASD diagnosis, her sister ADHD, and her brother and mother lead a very secluded life and are in our opinion fit for an ASD diagnosis. It runs in the family, so to say. Her sister also gets checked for ASD however she's quite "different" from the other ones mentioned.
And that does wonders for you when trying to be diagnosed and, if you are lucky, treated.
BTW, I also don't think of ADHD and ASDs as diseases either. Like you said, it's more like the way we are wired. I am wired in a somewhat odd way, but I wouldn't trade my brain in for the standard model, even if it is inconvenient sometimes.
Yup, people with severe autism get diagnosed early in their life, as child. They're clearly impaired by their autism, and get help.
People with a mild version get un(der)-diagnosed, especially women. They're expected to just blend in with society yet when they have difficulty in life, they're being told to e.g. "man up". Which might work with NTs shrug.
If you don't see a disability, its not there, right?!
If you don't understand how to interact with people, you don't understand. You need help to figure it out, or you need help to realize you don't need help.
Yeah, that's the one billion dollar question indeed, one even specialists are unable to answer. (Both me and my significant other asked our specialists this very question.)
Autism is a (developmental) disorder. In our society you're expected to behave in a certain way, and if you don't you get burned. You get called a witch, a hermit, an oddball, a nerd, or what have you. People with mild ASD can function in our society, but there will be situations where they have to adapt to society's norms instead of their own.
If the world worked the way I'd envision, a lot of small talk simply wouldn't exist. Simple example: I get fucking annoyed by this terrible, inhumane and fake way Americans seem to greet each other with how are you which they don't mean one iota of. I cannot stand it, but I have to endure it, and the American culture is coming for you. It slowly creeps up into the world, for good or bad (not saying its all bad!). Another example: looking someone in the eye when you talk to them. I don't want to! I get over-sensitised! I prefer to stare to something beautiful peaceful, such as clouds, nature, or some one point on the wall which has a slightly different colour.
The good news is that people with mild ASD, with adequate help and understanding from their peers, can have a functional, successful life and many have bend the positive side of their ASD to something fruitful. Whether that's some scientific advancement, great invention, financial success, or a plain happiness is less relevant than it might seem.
I've lost plenty of jobs because of it, and for the longest time I just figured people like to be mean, because when I was fired, nobody would ever say why, even when I pressed them for a reason. When I was shunned or excluded, people feigned ignorance and looked for a quick way out of the conversation when I asked why. It's incredibly frustrating and saddening feeling like people pick on you for no reason, when you know that there IS a reason, but nobody will say what it is, or how to fix it.
I've tried being extra friendly (people think you've got an angle), being strictly professional (people think you don't care about anything), more helpful (people think you're brown nosing), more talkative (people think you're a buffoon), less talkative (you become the guy nobody knows, and are the first to go at layoffs). And since there's no apparent rhyme or reason to their reactions, your life becomes a series of ticking time bombs until a relationship ends, a friendship ends, a job ends... Who you are means nothing if it slowly creeps people out.
I had one wake-up call when I was called wierd by my training buddy, him question why I even took part in the classes we were taking. I asked him why, he responded that my T-shirt was cryptic.
After explaining the print to him (it was a film reference), he thought everything was fine again.
That's sadly the level some people operate on.
Something you commonly see with impaired kids is that they are given far less control over their lives, far less choice, than "normal" kids. I did the opposite. I gave my kids more latitude, not less, to help them be comfortable.
It shouldn't really come as any surprise that sensory issues plus other people not doing things on your terms typically results in an aversion to being touched at all. It isn't necessarily solely due to them being ASD per se.
When I was a child, it was far worse though. Just like the author, all my life I’ve learned through experience how to talk and I started so many fights as s child and hurt so many friends with my words. The worst part is that those things still haunt me, I regularly lose sleep because I remember somethibg weird I did as a teenager, finally figure out why it was weird, and feel like shit.
This fear of doing or saying something bad still keeps me away from social gatherings. When I feel like I don’t get any feedback on how I’m performing I often bail.
Sensitivity to non-harmonic noises, especially loud ones. The tapping of a pen, the hum of someone standing around. I cannot stand being around crying children. The feeling isn't quite that of blood pressure rising. More, that it creates a bubbling discomfort that makes me feel as though I might speak out against my own will. I never do, but it feels that way. So I have to remove myself from the situation or do something to rectify it.
A preference for non-verbal communication, well over that of my peers. A thumbs up. A nod. A wave instead of a "hey". I wave to greet people in case they don't hear me. I'm quiet because I don't like loud noises, and my own voice is near myself.
No interest in forming social relationships outside of work. People can tell I'm not interested because I don't offer to do activities outside of work. So I learn about people meeting up after work through overhearing people in passing. I'm okay with this, but I realize that this is outside the norm. Many social activities are not of interest to me.
I stave off loneliness through watching streams on Twitch and interacting primarily through Reddit. I get to control how much interaction I want. In both cases, I aim for smaller communities. I have a large body of programming work that I rarely discuss not out of humbleness or a desire to keep it to myself, but because the social rewards of sharing one's work don't carry the appeal to me that they do to others. At least, that's my assumption.
I can't read people's faces. I stopped bothering to try some time ago. I intuit by relation. This scenario seems familiar. I bet this person will want to do that. Aha, I thought so. I've also learned to tune into people's word selection. Do their words suggest urgency toward a goal, or a more relaxed attitude toward it? How do they ask for my attention? How do they speak about what they're wanting to learn? Where is this? Over there. Other questions with more detail suggest the speaker has more time, and may allow for more detail.
On the face of it, I can come across as relatively normal (though quiet). Deep down, the signs of Aspergers are still there, I've simply managed to find clever ways around them.
If that seems to make the term lose meaning, it's only because the original impression was warped.
I should think so given the challenges the article describes. You can't really believe that only people who act like the Rain Man are autistic. I suppose this kind of misunderstanding is one thing that makes the elimination of the name "Asperger's" in favor of "ASD" a problem.
I realize that you are not the original commenter who alleged that the term "autism" was being thrown around too lightly, but you're happy to agree. Is the entire basis for your view that sometimes people are misdiagnosed? Or do you have a stronger claim in mind?
Of course the fundamental issue is that the difference between disorder and being different is not well defined. I think a reasonable definition would be a disorder is something that's likely to cause an individual to harm themselves or others in a way completely outside of their control. Schizophrenia is a good example, as are the sort of autistic children you can find that have little to no ability to communicate and might see engaging in 'autistic flapping' in a corner.
Imagine if we treated things like schizophrenia the same way we do autism. We better stick every single religious individual that claims to be able to communicate with or hear the voice of god on antipsychotics and scheduled 'treatment', as they're clearly on the scale. From a secular point of view, that's kind of an amusing idea but only as a form of schadenfreude - it's of course an idiotic idea and notion. They may have eccentric views or behaviors, but that is not schizophrenia. The definition of mental illness should not slide so far as to begin to encompass people that clearly are not ill by any meaningful definition of the word.
This post answers yours clearly: it is a spectrum.
> I think a reasonable definition would be a disorder
Homosexuality is not a disorder according to ICD or DSM. Autism is a development disorder. Schizophrenia is a psychotic disorder. Disorders cannot be cured, and cannot be treated either. One can learn to cope with them, but it cannot go away like a traditional disease. Its a verdict for life, so to say.
Someone with autism can have other issues, on top of their autism, e.g. ADHD or depression however autism is the main issue from which the other issues derive from.
The rest of your post is just denial, and I can only speculate why.
> The definition of mental illness should not slide so far as to begin to encompass people that clearly are not ill by any meaningful definition of the word.
That's why we have specialists who analyse people, and not laymen like people themselves, or people like you who claim about random strangers they "they don't have autism" or "don't have severe enough autism". Those people who get a diagnosis by said specialists who specialised in ASD generally don't get misdiagnosed. You may safely assume that those people have ASD. If they're not a child anymore, that generally means they have a relatively mild form but as you can read throughout this thread that doesn't mean they don't suffer, or that there's no room for QoL improvements. You can figure out how adults with so-called mild autism suffer by reading into their stories. The linked story is a great anecdote though unfortunately the subject didn't get a diagnosis.
I am lucky enough to live in a relatively rich country with decent healthcare. But many in our world, including in the USA, are not as good off as I am. Those people might run around un(der)diagnosed. That saddens me, as I've been misdiagnosed and un(de)rdiagnosed myself for a good 3,5 decades.
And this perhaps generalizes to these fields in general. The entire fields of psychology and psychiatry are currently in crisis in that their studies and research in general is now, more often than not, deeply flawed. I'm sure you aware of this [4] study which showed some 61% of major psychological studies published in reputable journals did not yield the results claimed when replicated. Follow up results from different researchers have corroborated this issue. One of the responses from the psychologists and psychiatrists involved in the unreproducible studies was to complain that they didn't use the nearly identical samples - for instance using students in e.g. Germany instead of students in New York. However that is a rather direct acknowledgement that these studies do not generalize in any way. But if they don't, then these fields are in no way producing science, let alone actionable science.
A very related issue here is the medicating of people. A recent study indicated that some 17% [1] of Americans are consuming psychiatric drugs. That number nearly doubled in a decade, yet the science on these drugs is very questionable. In recent trials upwards of 80% of SSRI's effects were explained by placebo alone. [2] That number should be doubly surprising as the side effects of SSRIs are, by contrast, very real and tend to undermine double blind studies. And the longterm effects are looking quite dire as well. This is all made more problematic by a pharmaceutical industry that sponsors research more aimed at them making money than on improving healthfulness of people. Emphasizing this is the fact that more than 50% [3] of preclinical medical trials also have results that were later found to be unreproducible.
[1] - https://jamanetwork.com/journals/jamainternalmedicine/fullar...
[2] - http://journals.plos.org/plosmedicine/article?id=10.1371/jou...
[3] - http://journals.plos.org/plosbiology/article?id=10.1371/jour...
[4] - https://www.nature.com/news/first-results-from-psychology-s-...
You seem to be under the impression that all autism, regardless of location on the spectrum, is treated the same way (and that way invariably involves heavy medication).
Between this and your "I knew a kid once" original post, I get the strong impression that you know very little about autism or autistic people, and are forming strong opinions based on little more than rumor and anecdote.
In the most expansive 'recent' study I am aware of, 64% [1] of children diagnosed with autism end up taking at least 1 psychotropic medication over the sample period, which was ~3 years. Substantial numbers ended up taking multiple, different, psychotropics. This is speaking specifically of children. In older subjects medicating rates are higher, and all rates have been increasing sharply over time.
[1] - http://pediatrics.aappublications.org/content/132/5/833
If you want to make the argument that some of those symptoms (whether autistic or not) would be better treated with counseling than medication, that's reasonable. But I don't see how you can look at that data and conclude that all autistic people are treated exactly the same.
If you've had experience with one person with autism, you've exactly that - experience with one person with autism.