What Puts Someone on the Spectrum?

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I am writing this from Autreat, and it's something I've been thinking about due to my recent dispute with a friend in Toronto. I've asked one guy here about what defines somebody as being on the spectrum, and he said that it's the sensory idiosyncrasies that place an individual on the autism spectrum. But again, it seems to be the matter of degree. Non-autistics can have sensory differences, as well. The concept of "disability" is very relative. Anybody can technically have a disability of some sort. For example, introversion can be considered to be a disability in a society that is dominated by extroverts. Everyone has some autistic traits, just as people can have inattentiveness, anxiety, bipolar periods, etc. In some people, some traits can be more severe than others, and the presence of these different characteristics is what makes each individual's personality unique.

The problem I have is that some people simply dismiss Asperger's as a "personality type", and think that the processing issues, executive dysfunction, etc. is something that can be easily overcome by choice. I find this argument very difficult to counteract. Yet, I am still aware of the fact that there are a lot of people under the same label for whom Asperger's is a significant disability that affects their quality of functioning to the point that they cannot get a job, get proper education, etc. solely due to their symptoms. I just can't accept the fact that someone who is not having significant difficulties with their daily life and someone who does have such difficulties deserves to have the same label.

I recognize that this is a controversial issue, but I'm trying to wrap my head around this whole disability vs. personality thing. So please forgive me if this post somehow offends you. I'm only asking for opinions, not personal attacks.

I tend to agree with you on that. If someone isn't having significant impairment, I don't really see why they would want a label at all. AS is not a Nerd Fraternity, thus it irks me to hear anyone say "I think I have Asperger Syndrome, but I don't see any need for a diagnosis'. If you're not impaired enough to need help, you're not impaired, therefore IMO you likely don't have a 'disorder'.

At the same time, I recognize posts quite often from those who don't even yet realize how impaired they really are and how much difficulty their condition stands to cause them in the years ahead.

In my own experience it is possible for one to muddle through life for years and years without any label or diagnosis whatsoever, thinking you're doing reasonably well, only to run aground in middle age, reaching a point at which the coping mechanisms one has developed over a lifetime are simply no longer adequate. And that is terrifying.

Its one thing to manage from month-to-month, barely keeping one's head above water year after year, hopping from job to job, but eventually one has to have some way of building a bit of stability for the final stages of one's life and at that point the lack of Executive Function becomes even more critical than poor socialization or naivete or sensory issues. I was horribly impaired for nearly fifty years and was told the whole time there was nothing wrong with me but my personality.

In other words, my functioning was always significantly impaired, but the effects had to reach a critical mass before the handicaps were recognized, and then only by accident. Its sad to think how close I came to spending the last portion of my life wandering the streets alone and scared, begging scraps from homeless shelters and sleeping under bridges, and that there are probably many other Apergians out there who are living that very fate even now.

There's nothing chic or elitist about having Autism. It sucks. So if you don't need the label, don't claim it. It doesn't mark you as a genius and it ain't cool - its a handicap and a burden every second one has to live with it.

I think that communication difficulties are probably one of the biggest (if not the biggest) factors that come into play when it comes to someone being autistic or not. In my opinion, being unable to communicate effectively and being able to, but being reluctant to do so, are two different things. I would classify someone who has the inability to communicate effectively as autistic, while the person reluctant to do so may just be an introverted neurotypical.
I don't believe the sensory problems are mandatory for someone to have autism; they're just commonly found in those who have the other characteristics of autism (communication difficulties, problems with socialization, need for routine, etc.)

Last edited by jmnixon95 on 01 Jul 2010, 6:24 pm, edited 1 time in total.

For me, it's a bit of personality and neurology, both. Before I developed a coping style, my autism was much more apparent. That was during childhood. With practice, I developed ways of dealing with circumstances and my overall approach to life, which resembles that of a depressive type, to some extent. With more of a diagnosis as a child (something besides just "hyperactivity disorder", which didn't fully address my needs), I might have gotten more assistance in developing better ways of coping, ways that promote self esteem and empowerment.
I am definitely not like I was as a child, not totally, and I attribute that to my personality, my way of approaching and dealing with life. That's not saying autism is a personality disorder. It's neurological. I wouldn't say I have the personality of an autistic, more one of an avoidant. I am still autistic.
My theory is, if I could change locations, it would be easier to work on my personality, but my autism makes it extremely difficult to adjust to new places without a lot of support. Where I am at now, I figure there's no point in working on my personality. I feel defeated.
I notice my autism most when attempting to adjust to new places. That can be new people or new jobs as well as actual geographical locations. That's where my personality takes over, with this strong urge to flee and not return.
I won't dismiss the effects of personality on my life. I think there's room for both autism and personality in my brain, regardless of what anyone else thinks. Who else would know my life better than me?

A person with 20/30 vision and a person with 20/600 vision each have myopia, but the first person probably doesn't even need glasses and can function fine, whereas the other person may well be legally blind even with glasses.

That's not a direct analogy though because autism doesn't run on a straight continuum from mild to severe in any way that can be figured out yet. It's far more complex. But still, I find it dangerous to deny someone a label just because they happen to be in a situation that works well for them. If they have the same type of neurological differences as someone who has a lot more trouble than they do, then why on earth is it a problem to be classified in the same group of people?

And I'm saying this as someone who needs way more help to get through the day than most people on WP that I've seen (including a lot of the people who gripe about people being too mildly impaired to be autistic).

And the same goes for other conditions I have. I have severe, constant headaches that require a cocktail of drugs plus repeated nerve blocks in order to function, and the pain is still often in the severe range, just not in the writhing around wholly incapacitated range. Other people have the same type of headaches but much less often and much less severe, and they can function throughout them, they're just uncomfortable while doing so. There are even people who have migraines with no headache at all, and minor cognitive and visual impairments where you wouldn't even know there was a problem (and they don't even consider it a major problem, they just see sparkly things for awhile). They're considered to have migraines though, just the same as people who have severe status migraine and have to be hospitalized because they can't function and can't even keep food down.

Meanwhile, I'm considered epileptic even though my seizures are well-controlled, and even though even when they were not well-controlled, they were nothing like the seizures a friend of mine has. I have mild temporal lobe epilepsy with complex-partial seizures and possible absence seizures (and for about half a year I had atonic and myoclonic seizures up to every few minutes but that was epilepsy interacting with a medication to become more severe than usual). She has severe, intractible epilepsy with just about every kind of seizure, has them every day several times a day, and has been clinically dead before and had to be revived after prolonged status epilepticus. She is a candidate for brain surgery to possibly prolong her life. But we both are epileptic. Neither of us is bothered to share a label with each other despite the huge difference in our experiences.

Again, I think autism is infinitely more complex than these other conditions that have fairly definite lines between mild and severe. But still. I really don't find it disturbing, insulting, whatever, that I have great difficulty with certain things because of being autistic, and other people have minor difficulty with those things if any difficulty at all. If you're of the viewpoint that autism is something innate, then there's no possible way to justify barring people from the label of autism just because it makes some people uncomfortable to share the term "autistic" with people whose experiences are so different. Frankly I think that's more the problem of the person that is uncomfortable, rather than anyone else's problem, and ought to be changed internally rather than attempting to impose people's views on others who just want a word for what's different about them whether or not they have trouble functioning.

The word autism is only useful inasfar as it helps people understand themselves or other people, or helps to provide services, or some other positive thing. When people start messing with the positive effects of it for people who only want the label so they can say "I am like these other people who understand me," then they're not really helping anyone, they're just serving various prejudicial ideas about disability. And that doesn't actually help anyone in any concrete way. The existence of people who can function okay without any unusual services, really really doesn't take away the services that help me survive. And if it did, it would be because of prejudice, not because these other people are also considered autistic. And even if I was bothered by it, it's not my place to judge other people for their own perfectly legitimate reasons for using the word autism. If they had no good reasons for doing so, they wouldn't be doing it.

I agree in that a person who is not impaired by their symptoms does not have a disorder. Maybe they are what is called "broader autism phenotype," maybe it's personality, maybe it's a way of life, but it's NOT a disorder, by definition.

A person is "autistic" when he or she has the triad of impairments- social, communication, and stereotyped/repetitive behaviors to a degree that it impairs functioning.

I think in a hundred years if the human race lives that long, there
will be other 'labels'.
If the label goes some way in explaining what you experience - go
along with it.
If it doesn't - find another label.

I think the hardest thing of all is just being 'weird'. But that is what I think
I am - even though I am supposed to have Aspergers. Get away from labels.
Don't seek refuge in them. Learn what they mean, but don't revel.
I don't want to be patronising here. I hate being patronised myself.
I think you are OK. You just need someone to tell you it is OK what you
believe and find yourself. Gosh, that almost sounded patronising. I will shut up
now.

willlard, your words are very deep and a lot to take in.
Great food for thought to ponder on.

I wonder how much along the 'spectrum' we are. and how much that precludes
our ability to communicate with one another.
though, i would say, you conveyed something very much information wise to me.

To the OP, a personality is a disability.
No one person can be all things to all men.
Be true to thy self.
Love thy self.
Those worth it will love you too, if you are lucky.
Some people have no one to love them.
And it is not because they do not have 'autism'...
or do....


I think you are fine, and will be fine...
read willard's words as a caution - he/she has more to offer
on this subject than me, but I am supposed to be 'almost' NT...
I wouldn't have a problem in meeting you in RL.

I guess the problem is how much you have with yourself.


I'm not making sense to myself anymore so i will shut up.
I guess I shouldn't post this, but I will, so if it doesn't make sense, sorry!


cheers.

Poor social skills and strong narrow interests, are what did it, for me.

So if a person is born blind, and has repetitive behaviors because of that (many blind people rock, press their eyeballs, and have other similar mannerisms to autistic people). And has communication problems because they were deprived of communication opportunities in early childhood. And has social problems both because of the same reason they have communication problems, and also because being blind limits their ability to pick up visual social cues. Is that person autistic?

There are many other scenarios like that, too, that can result in impairments in all three areas, but that most people would not consider autism. So it must not be just having impairments in those three areas.

Additionally, a lot of people on this thread seem to think that "impairs functioning" is an objective trait. It's not. It can be highly situational, even for people with things as seemingly objective as spinal cord injuries (some of whom can be totally independent and others of whom can't, even with the same level and type of injury -- but nobody would dream of telling the totally independent ones they're not paraplegic/quadriplegic, even though people seem totally happy doing the same exact thing to autistic people). You can take the same exact autistic person, and have them grow up in two totally different ways, and one way they would not be diagnosable by the standards of people on this thread, and the other way they would be considered fairly severely limited. All these seemingly objective terms that people rattle off, aren't as objective as they look.

what puts someone on the spectrum is meeting the diagnostic criteria, that means they need to have a certain number of traits from groups of behavioral traits. there is no requirement of severity of traits. since there is no biological test that can be done, its done by observational data, which means different evaluators may see traits in different ways, resulting in differing diagnoses for the same individual.

i believe its up to the individual to decide what they consider a "significant difficulty". thats going to differ for each person. what may be considered a significant difficulty for one person may be acceptable to another. what may be a disability to one may just be personality to another. and you cant see what goes on in someones head and heart. they may feel like dying on the inside when all you see on the outside is a slightly quirky person. thats not even getting into the fact that a persons functioning will change over time where they may be fine during one point of their life and then nonfunctional at another time.

i CAN tell you that some people who have asd may not realize the extent to which it affects their life. they may see their atypical ways as normal, and see the people around them as the strange ones. my SO is undiagnosed yet an aspie. when our son was undergoing evaluation this spring, i started to think my SO was on the spectrum too. i told him that and he dismissed it. only after i said it a few times did he really start looking at the diagnostic criteria and then believed it himself. suddenly so many things made sense, for both of us. i cannot count how many times i have been called irrational during an argument because my way of thinking didnt fit his. how many serious fights weve had due to his freaking out and having an adult meltdown while grocery shopping that resulting in him cussing at me and humiliating me in public. these were things he blamed on me and he thought his actions were normal.

sometimes i think that if our son hadnt been an aspie, if we hadnt gone thru the diagnosis with him, hadnt been able to trace it back genetically to the source (his dad), that my SO and i probably wouldnt have made it much longer together. it can be pretty rough living with an aspie, but ive found its a hell of a lot easier if you KNOW they are an aspie. at least then you know they have a diagnosable neurological disorder and arent just being an ass.

At home, I act pretty normal other than obsession over particle physics.
At school I'm completely different, you wouldn't think I am the same person at all.
Scenarios and situations make a huge difference.

I think the spectrum is wider than just the people who have a disorder. So, yes, the spectrum can include people who don't have a significant disability, as far as interfering with their lives. I don't see the spectrum as just including the diagnosed and the diagnosable.

But, at the same time, I think it certainly includes everyone who is, or can be, validly diagnosed with Austim or Asperger's. I would definitely disagree with the idea that sensory idiosyncrasies is what puts one on the spectrum, since, while that's common in autism, still, I think it's not universal, and I know it certainly varies a lot, and it's also not a defining symptom.

I know what you are trying to say.
But technically we won't go into that.

I don't really have the 'disorder' as you put it.
But I am on the outer bounds of the 'spectrum'.
Supposedly.
Then again, what do I know?
Who am I trying to kid?

That's on par with saying that if you aren't sick enough to go to the ER you aren't sick. I'm impaired in my personal interactions with most people - relations with my peer group as the doctors would say - except with a small circle of friends who share various interests of mine. The thing is I don't care. So while technically impaired here it's not important enough for me to seek help to deal with.


I'm impaired when my difficulty with vocal tone (both using and understanding) causes trouble with my wife. However I don't feel the professionals can help me here any more than my wife and I working on the problem ourselves.

Most importantly I'm impaired at every job interview I've ever gone to. I've had the help voc rehab offers in my area and it wasn't helpful. That may be because I was working with them due to other diagnosis I do have and AS wasn't widely known of at the time I worked with them but my experience leads me to believe that the help they provide, in my area at least, just isn't very useful. I could suppose try for disability if I had a diagnosis but I don't think I'm disabled ENOUGH for SSD and they'd probably point at my work history in Denver where I overcame my impairment and managed to work as a special ed para-pro for 4 years.

You do not get to tell me how impaired I am until you have been me.

What would you consider being impaired by the symptoms? I never really worried about what might be "wrong" with me before, but I am about 10 years behind my peers socially, I cannot seem to connect with people deeply, never been in a relationship, can't comfort people, can't tell my mother I love her, say things which seem to offend my friends...

I'm not sure if I should be worried or not.