Autism is a meaningless word

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... and this thread title is just attention-grabbing bollocks. I don't actually think it's a meaningless word.
But now that I have your attention I'd like to relate an experience that made me think that it's perhaps not a very well defined term.

So I have children who often behave in strange ways ... many of which I now know are typical of autism.
A few months ago they got diagnosed. I guess I expected that somewhere along that path I would learn "what autism actually is", and how to deal with it. Well... what I learned is that, where we went, they diagnose on the basis of a "score" from a questionnaire (a locally adapted version of ADOS, I guess). At the first meeting they ask the parents about the kids' behaviours and at the subsequent ones, they try to see for themselves. Effectively their definition of "autistic" is: "someone who scores more than X on ADOS". Now, all the questions on the questionnaire relate to their behaviour - which I already knew before the diagnosis. So what extra information did I gain now by "knowing" they are autistic? Zero. Well.. ok.. I learned that there are some other behaviours considered typical of autism which my kids don't exhibit. But that doesn't tell me anything new about my kids, nor does it bring me any closer to a working definition of "what autism actually is".

Don't get me wrong, the diagnosis has helped in some ways because we can now get some of other people's heard earned taxes to help our kids, get some of their treatments/activities subsidised, etc. But as for actually learning something - not so much. The whole thing was more like a series of bureaucratic hoops we had to jump through to get at the dough, basically.

And it's weird, when someone asks me "what's up with your kid?" and I answer "he's autistic", they act as if that actually explained anything. Whereas I now know that all it means is that he exhibits certain "typically autistic" behaviours as described in ADOS - which the person asking the question has already noticed, or else they wouldn't be asking in the first place. But if I say "he has communication problems" they'll say "OK but why? is he deaf? No? Autistic? Oh, I see!" - as if that actually explained anything. As if "autistic" actually meant anything beyond "he behaves like you just saw him behave". It seems to me like circular logic grounded in a big bunch of nothing. Whereas "communication problems" at least has some semi-concrete meaning.

Yes, weird quasi-philosophical stuff of this kind bothers me sometimes. Especially people throwing around big words without ever saying "hang on, what does that actually mean?". I guess that means I'm not completely normal myself but hey, no surprise there!

Can anyone relate?

If they were diagnosed just based on one test you better get a second opinion.

That said understanding of autism is in it's early stages so a lot of it is still vague and contradictory. But this should improve with time.

What would I do with a second opinion?
I got what I wanted - money.
We're not exactly rich and some of my kids' behaviours make life quite a bit more expensive than it would otherwise be, so every little helps.

Yes I would prefer if everybody including me had to pay less tax, rather having the state rob me with one hand while handing me money they robbed from others with the other hand, but that option is not available here or in any other place we could realistically move to.

Autism is an explanation for behaviour. It says, "he's not screaming and throwing a fit because he's a brat, it's because he has sensory problems [which others can't see]." It says, "he's not responding to you because he's autistic; he's not deaf; if you use sign language or writing, he won't respond either, and he's not just ignoring you to be rude." Autism helps narrow down the reason behind a specific behaviour; people can see the behaviours your children are exhibiting, but they could be from a dozen different sources, all of which require a different approach to address. Using the label 'autism' lets people know which approach to use in this instance.

I know what you mean. I needed a diagnosis to stop my employer from grinding me down, and frankly that was the most noticeable thing it did.

I agree that the whole concept of ASD is so subjective that it can be hard to believe it means anything real or that that diagnosis was anything more than a clever con trick on my part, but one or two things I've noticed would suggest otherwise:

1. I used to write very detailed diaries before I knew what autism was, including a lot of self-description that made little sense to me at the time of writing. But when I read them now, in the light of my knowledge of autism, they make a LOT of sense.

2. Once I "knew" I had ASD, I was able to compare my own traits with the known Aspie traits, and a lot of things about me became clearer. It gave me a handle on my likely strengths and weaknesses, so I knew what I'd best avoid and what I might be good at. It didn't make me any stronger as such, but it helped to stop me burning myself out on stuff I couldn't hope to achieve and from blaming my "attitude" for some of my social problems. It's rather like getting my hands on my astrological profile in a world where astrology actually works.

3. Even if the individual traits are the only objective thing about ASD, even if ASD itself is a myth (though I don't believe it is), just knowing in such depth what traits I have is very useful as self-knowledge. Sure, I "knew" about those traits all the time, and so you could say that the process told me nothing I didn't already know, but my awareness of them and their significance for independent living, social success etc. would never have been anything like so strong if I'd not looked at autism. I thought self-knowledge was only about personality types, but a lot of the autism questions were quite new.

Thanks all.
To be clear, I'm not arguing that ASD is mythical or anything like that. It's very obvious that my kids are "different", not by their own choice, and that some of those differences cause problems for them (and for others).

I guess what I'm saying is that, for people who have already seen my kids, telling them "they are autistic" or "they have autism" (take your pick ) just satisfies people's need for a label without adding any actual information - because the actual meaning of "autism" (as defined by the diagnosis criteria) is basically: "someone who behaves like my kids do, or some variation thereof".
About sensory issues or anything else which other people can't see, if I understand correctly these things are not actually used as diagnostic criteria, precisely because they cannot be observed by others. It's not like, say, kidney stones or something, which people generally can't see but a doc with an X-ray machine can. In that case, saying something like "this person is in pain because they have a stone in their kidney" does actually add extra information, which one wouldn't normally know without being told.
But the ASD diagnosis - at least in the case of my kids - is based on nothing but observable behaviours. Therefore, to someone who has already seen those behaviours, the "autism" label adds precisely zero additional information.

When I see people needing labels without asking or caring what the label actually means, it makes me despise them ... and I don't enjoy despising people. So sometimes that makes me a bit sad. Overall, this is far from being the biggest problem in my life, but still, it's good to get it off my chest here. Thanks for listening

One major point, as I see it, that has not yet been brought up is that autism is a neurological condition. It is not a behavioral issue, discipline won't help and it doesn't stem from bad parenting. Your child can't help doing many of the things they do; they are just trying to cope with a world that wasn't built for them. In practical terms, telling someone that your kids are autistic tells that person not to blame your child or you. It also tells you some ways in which you may be able to anticipate your kids' behavior and also help them to be more comfortable in situations that you can control. For example, if you know your kid has sensory issues with, say, loud noises, you can know to avoid situations that would cause loud noises, or give them headphones or earplugs to use so they can avoid having a meltdown. If you don't know what's causing the problem, you can't know how to solve it.
Another example is hand flapping or other stims. If you know that it calms your child, you will know to let them do it; if you didn't know that, you would try to force them to stop, which will cause them more stress and they would possibly act out in more bothersome ways. You can't stop autism, but you can make life better for your kids if you know what is happening with them and you understand a little more about what their experience in the world is like.

My wife, who was a mental health expert and support group leader, finally figured out why her years of experience flat out didn't work in my particular case, once she made the determination of autism.

I see both sides of this. There's what the person themselves gets out of the label and how well that label communicates to others. For me, getting diagnosed (as an adult) was like a huge light bulb moment. Like you with your kids, I already knew my personality and my behavior. But it was like there were all these disparate things with regards to how I interact with people and experience things that didn't really line up with the way I viewed the world prior to my diagnosis. Getting the diagnosis was kind of like looking at those magic eye pictures from the 90's. All those random, disparate things in my life snapped into place in something that made much more cohesive sense as a whole.

But for the informing others side, it tends to be pretty worthless. I don't think it has so much to do with the limitations of the label so much as the lack of understanding of what it means with most people you encounter. You say autism, they think [list of stereotypes]. Then they either assign those stereotypes to you, even if they don't fit, or the insist that the label doesn't work for you because you don't match enough of the stereotypes. There's the rare case, every once in a while, where it really helps someone else understand you, either because they already know enough about autism, or because they care enough about you to put aside their preconceived stereotypes to learn what it means for you. Those are few and far between, but they still make the diagnosis worth it IMO.

I would actually disagree here. That's what it means to the outside observer who doesn't experience the cause for that behavior. But for the individual with the diagnosis, "autism" effectively serves as a blueprint for understanding the way your mind works, where that leads to difficulty interacting with others and your environment, and learning appropriate coping mechanisms to improve your life.

I believe the term Autism is too generic being that its a spectrum disorder one child can show symptoms of xyz while another abc. To many when one mentions one has autism the common stereotypes are rain man or "the kid with the helmet" comes into mind. I was digonosed roughly 2yrs ago and for me it did help me figure out why I do some of the things I do and why I did the things I did. It helps knowing "what is wrong with me" but getting the right services have proved to be an up hill battle due to the fact I am higher functioning but still have some social issues which kinda hampers any job longevity.

At one time I would agree with you that "autism is too generic." But, as an older and hopefully wiser Aspie I realize that NTs are too stupid for anything more accurate.

I agree, except to say that I think the reason is not stupidity but willful ignorance. If it doesn't directly affect them, they have no reason to learn what autism really is about, and they instead let TV shows and advertising campaigns teach them the meaning of autism (from the perspective of the show or advertisers, of course).

Yep spot on. I've had people say oh you don't seam to be that bad referring to the above mentioned stereotypes or they over do it Oh you poor thing I can only imagine what it's like for you (no you can't) is it hard for you to do wyx or are you able to xyz. I normally try to tell people that it's a spectrum disorder from low functioning to high functioning and that I'm somewhere in the middle leaning more towards the higher functioning side to which I get an "Oh"? and blank stare. I was talking a little about the disorder from my pov to one of my aunts and she was like I bet your happy now that you know you have Autism & I bet you can get/find all types of help being that Autism is the "in" thing now and is trendy. To which I was dying inside because I don't consider a disorder that affects my social abilities and hampers my longevity at work to be trendy nor do I find it to be the "in" thing where I am sensitive to loud noises or sensitive to bright lights nor have I been able to get/find all types of help. nor am I happy that I have such a disorder (but I'm glad I have an understanding of what's "wrong" with me). But I just sat nodded as she went on, on how trendy Autism has become in recent times and how lucky I was that there is help out there and more of an understanding there is about the disorder.

If they got the wrong diagnosis because it was poorly done their treatment/accommodation's may be ineffective or harmful. But I agree that with this crazy system we have there are often no good choices, decisions are often a choice of which will be the least harmful.

Good discussion, thanks all!
I'd like to make a distinction between what the word autism DOES (e.g. how it makes people react / treat you) versus what it MEANS (i.e. its definition, or lack thereof).

In my case, a good example of what the word autism has DONE is to give me the right keyword to type into Google so I could find this place

StarTrekker: I pretty much agree with everything you say but I also think these are all examples of what the word does, not what it means. My sons were diagnosed based on their behaviour, not the reasons behind their behaviour.

ToughDiamond:

Perfect example of something that the word autism DOES.
More good examples further down in your post.

Jimmyboy:

Another one.

gamerdad:

Tell it, brother!

My experience so far has been that with those who are sufficiently open-minded and caring, it's still better to first let them actually observe my kids' behaviour first-hand for a while and then tell them "BTW they were diagnosed with autism. Yes they're not Rain Man or whatever image comes to your mind when you hear that word, but hey, not everyone is alike and that holds true for autistic people too. Autism is a whole big wide world" - or something like that.

JoelFan - I salute your patience. If that was my aunt I think I'd have said something very rude and just walked out on her.

Now, back to what autism actually MEANS - aka its definition: Where our kids were diagnosed, they use a questionnaire and observation. Anyone who gets a certain score or over is diagnosed ASD, anyone who doesn't, isn't. Ergo, that's their definition of autism, right? You're free to disagree with it of course, but it's on the basis of that definition that we got the diagnosis and everything that comes with it. And that definition is not particularly clear cut, certainly not concise, and leaves quite a lot to the discretion of the examiner(s).