Do most autistic children know they are, and at what age do they find out - or are told - they are different - if at all?

If they have a condition from birth, no matter what it is, it will be normal to them.

The one born with the condition (whatever it is) will not fully understand it because they have no frame of reference. Same as a blind person cannot fully understand how sight works because they have never experienced it, they may have learned about it, but cannot truly relate as a sighted person would.

did you know that the medical field has a family of 5 children 4 of which are autistic, the family is allowing the children to be tested to see what may link them to autisium. They think now that they can track down the exact gene in thier dna that maybe the cause of the disability

I knew I was different around age 5. My mother suspected it around then as well.

Neither of us actually knew exactly how until almost thirty years later when they finally figured out that it was Aspergers.

@petersonsylvia Link?

welcome to fluther

@Zen: Developmental Differences of all sorts have tremendous variability. Autism spectrum disorders are a prime example of that; but even Down’s Syndrome with a clear genetic cause, ranges from mild to severe.

Having worked with these patients as children and adults, those with greater severity of cognitive impairment are less consciously aware of the differences between them and the general population. But those with less cognitive impairment have an awareness of the difference – if only in knowing that they are treated differently in the school environment.

As @DrBill notes, they don’t know what they’re ‘missing’ (for lack of a better word), because there is no basis of comparison. Conversely, those if us with average or better physical and cognitive abilities can imagine what it would be like to have one impairment or another… but you can’t really know. Just as an average person can’t comprehend what it would be like to have extraordinary abilities – whether physical/athletic prowess, or a high intellectual capacity.

In my position of evaluating hearing, it is challenging to assess the level of the individual person’s level of functioning within the first few minutes of the exam, so that I can gear the hearing test procedure to their own idiosyncracies… and this isn’t just with Developmental Differences, or cognitive loss related to aging; but even amongst “normal” patients, there is great variability in how an individual learns, interacts with and understands all that is going on around them. Many are very laid back, and flow with the process, but some are anxious or in denial of their symptoms. Each of us is different.

For example, I have “normal” patients with minimal hearing deficits that complain that they can’t hear, yet other patients with severe impairment that tell me they can hear just fine.

It’s all relative.

@zenele Here is a link about the family I think @petersonsylvia is referencing. Here is a blog link about them as well that points to the likelihood of six kids with autism being in the same family. This blog is written by the Dad in the family and he references (second article down or so) that his kids were all being blood-tested related to a study on genetics.

My siblings calling me the eyeball (our word for oddball) made it pretty clear one was not like the others

@hearkat – True, each of us is different. However, for a moment there, I thought that you were implying that all of us with ASDs have cognitive impairment and was honestly offended. It actually took me a bit of conscious effort to figure out that such offense was probably unintentional. I will admit that empathy and communications are not my strong point, but I would say that its more of a difference than an _impairment.
The only reason I might consider it an impairment is because it impairs my ability to interact with people who equate different with inferior… like I thought you did there.

I bring this up in public mostly to support your point about variability, and to point out that not all autistic people are low-IQ recluses who hug their knees and sit in the corner rocking, trapped in our own heads. And some of us can get a little touchy after a lifetime of being called “stupid” and thought of as inferior… though that might be true of normal people too for all I know.

I tutor an autistic child (age 10). He has two brothers aged 7 and 5. Now obviously I can’t say for sure, because its not like I can just ask him, but it doesn’t seem that he really “notices” a difference. Maybe that will change when his brothers grow up and start dating or moving away, but for the moment at least he doesn’t seem to know.

Its gotta be tough being in his shoes. Like until I started working with him I never realized how much of my own cognitive abilities I take for granted. Like you might hold up a picture of a dog and ask him “whats this” and he’ll answer “dog”... but then you hold up a picture of a dog with the word dog next to it and ask him, and he’ll just blankly stare at you.

I can only speak for myself, but I knew that I was very different as soon as I started formal schooling. Until I was school age, I didn’t have much interaction with other children; I had no standard of child behavior to compare myself to. I either kept to myself or tried to imitate adult behavior.

In primary school I rapidly learned that I was very different. Other children seemed to have some magical way of knowing how to interact socially that I couldn’t understand, much less learn. AS was unheard of in the 1960s. I have no idea what diagnoses were made, but the effect of the “treatment” on me was profound. Basically my parents and school officials attempted to “force” me to socialize, which led to my being strongly ostracized by my age cohort and my abandoning all attempts at learning social skills. I would throw violent tantrums if forced to socialize with other children, but behaved quietly and achieved top academic grades if left alone. I learned how to camouflage myself, never speaking in school unless a teacher called on me in class, disappearing during non-academic activities and rejecting any attention/awards for my academic achievements.

Even with the advances being made in treating children with AS/HFA (it’s incurable but treatable); those who were only diagnosed as adults don’t benefit. The treatment methods developed for children don’t work on adults. We sink or swim on our own. I was lucky to find a career path where social skills were not so important.

@tedd I assume that the child you are tutoring is low-functional, maybe nonverbal?

That’s a problem with HFA/AS, we’re just functional enough to slide under the radar screen, especially if we have very good verbal skills and/or high IQ.

@stranger_in_a_strange_land He is verbal, but not very functionally. He is “functional” to about as good a level as you could hope for. He can shower himself completely, but you have to prompt him to keep him on task (though we are working and having great success in teaching him to do it without prompting at all) and help him remember things, and given the nature of the illness he has to do things in a specific order. He goes to a special school for autistic children and spends most of his days one on one with a teacher there, then one on one with a tutor at home, or with his family.

Many times when he wants something he won’t know how to ask for it, but he does try to have you help him get whatever it is. If he knows the item he wants he’ll often (usually) say “Spell…” and then the item he wants…. Like “Spell Wendy’s” if he wants to go to Wendy’s. We think that is a result of his tutoring, and we are trying to work him into asking for what he wants like “I want to go to Wendy’s.”

He’s given us no reason to think he’s not intelligent, he just doesn’t have the connections in his head of how to formulate his words… if that makes sense.

@tedd It makes a lot of sense to me, especially the “hardwiring” analogy. I’m much higher functioning, but if I’d had the kind of focused coaching in childhood that’s available today, I’d at least be a happier person. My self-taught coping strategy was to withdraw whenever possible and build a very cynical attitude towards social interaction.

I feel conflicted answering the question. I don’t feel that I’m severe enough to really say- then I think about all the times I’ve fudged up socially, tactile issues and weird food problems. I just don’t want to be seen as speaking for anyone but myself. hope that made sense

I knew when I was about six. I was reading at a 5th grade level when I was in second grade- and they started me early in school. I watched the other kids play with each other and I just couldn’t understand how they did it. It was like watching people speak in code- I just couldn’t make it out.

At lunch I would sit in the giant echoing cafeteria and listen to 500 kids smack, chew and garble. It was hell. They would eat anything too- stuff I wouldn’t touch with a fifty foot pole. I looked around and realized I was the only one with a problem- everyone else was talking and whatnot. I knew something was ‘wrong’ with me.

Later, high schoolish, I saw people date and it was the same thing all over again. Like watching people speak some hidden language that didn’t make sense to me. I knew damn well I was different. So I pulled inside myself and became depressed. What was the point of trying if obviously I was such a freak?

I didn’t start learning truly good coping skills until I was already older- mid twenties therabouts. Mainly it involves avoidance because there’s no treatments out there for adults. Those of us born before the awareness have to fend for ourselves.

@gemiwing Your story sounds frighteningly similar to mine. I didn’t start dating until I was 38. Food, tactile issues, lighting, sounds, proximity to other people, blindness to nonverbal communication, OCD-like symptoms. Many of us develop social phobia as a defense mechanism. If you’re not diagnosed until adulthood, too late. All there is in a diagnosis is the “Aha!” moment of knowing I’m not alone with this, I can name the enemy.

Actually there is a possibility of improvement in adult Aspies. It requires identifying specific things you want to improve and intensive coaching to make even minor progress. You have to really want to make a change and work hard at it, one small step at a time. Even then, you’ll run into “hard limits”- things you can’t make progress in no matter how hard you work at it; the wring of the brain not permitting it.

@stranger_in_a_strange_land Yeah- the aha moment was nice, but then I was standing there saying ‘okay, now what?’. I’ve gotten a lot better by finding people/therapists I can ask questions to. I would look at expressions and conversations, then try to figure out what they meant by body language. Took a while but I’m better at it now. I still have to ask those close to me if I handled a social situation right. It’s common for me to ask Hubbs ‘did I do that wrong? did I interpret that right?’. He’s a good help to me.

The food thing though- look it’s just not gonna happen. I’m not eating that nasty stuff lol Also- the seams on socks. Just not going to get over that so I avoid it.

I guess it’s all about picking our battles.

@gemiwing Having a partner who really understood AS and had the patience of a saint, I was able to memorize the “easier” facial expressions and bits of body language. The more subtle things, especially with the eyes, forget it. Parties will always be a form of punishment to me. Meg was able to “interpret” for me, so we actually had some social life.

Many of the sensory issues are the same with me. Oddly, I’m good at cooking foods that I will not eat (fruits and vegetables have to go through the juicer to eliminate all texture before I can consume them). Seams, tags, starch, yup lol.

I pretty much hide out on my farm now and ignore the larger world. I like to do good things for people, but only if anonymously. For me, disarming an IED under fire is easier than attending a cocktail party. :^)

I would like to point out one major difference between @stranger_in_a_strange_land and myself, just to show what a difference a couple of decades makes. AS was still unheard of when I was in grade school but they never forced me to socialize. I had plenty of one-on-one tutoring on how to socialize though, so I manage to handle myself fairly competently. It’s definitely not intuitive, though after about three decades of practice, it’s getting easier.

One area where we are the same is that we both know the true value of having a patient translator to help us deal with the world. Even though I can manage on my own to some extent, it’s a little like walking on a sprained ankle; slow and painful. Some Aspies don’t grasp that or really feel the need for a “better half”.

Something to remember that is pretty much a defining difference between HFA and AS is language skills. Even today, @stranger_in_a_strange_land and I would have it a little rough trying to get diagnosed based merely on that since we are too linguistically adept. I was reading “normal” adult books well before age 5; something you won’t see a person with deficient language skills doing. Also note that a high IQ is common though not universal among us; I have yet to hear of many Aspies with below-average IQs whereas last time I checked, about ⅔ of those with non-AS forms of Autism were below average there as well.
So with normal-or-higher IQs and decent language skills, it’s pretty easy to overlook the fact that we are not quite normal.

It is difficult to understand the subjective reality of people whose ability to interact socially and verbally with others differs so greatly from the majority of others.

While greater support is offered to those whose fuctioning is significantly lower than average, I can attest that growing up at the extreme opposite end of the scale has its problems too.

Growing up as an intellectually gifted child, I found myself frequently at a great social disadvantage. Many of the things that interested and enthralled my peers were frankly of little interest to me. The world of books and the company of the brightest of adults became my refuge. I found it hard to relate to my same-age peers. I was very much out of the loop on the major topics of their interest and I hard a hard time fitting in. Getting near perfect grades did not improve my social standing. One of my grade school teachers remain my friend some forty or more years later.

It was not until graduate school than I experience what it was like to understand and relate to my peers. I’m not an intellectual snob and I learn as much from “blue collar” workers as I do from academics and I value many people who are as unlike me as they could be.

My point is that the “subjective world” people inhabit differ greatly and this impacts how each of us relates socially with each other.

If my answers sometimes seem dry and overly analytical, please understand that I never intend to be condescending or obscure. I write the way I think and perceive and this means I may sometimes seem to miss the point as others see it. I do work hard to understand and I experience the same feelings and emotions as do most others. I just ‘talk funny.’

@Dr_Lawrence I had that curse as well.

My step son is autistic. He’s a bit communicative. He became aware he was ‘different’ at about 13 years old. He goes to a regular school, but always had special help. It started bothering him about that age, that he couldn’t read like the other kids or understand what was going on around him. He’d get frustrated and hit his fist to his head and say, ‘My stupid brain.’ He came right out one day and asked his Dad. We were lucky that the timing was good, we were on holiday and could take loads of time with his questions. He only asked a few questions and Pappa answered best he could. Made sure to remind him of the special abilities he has because of the ‘different’ way he sees the world and that everyone is different in their way. We make sure to remind him that he’s not stupid and we correct him if he ever uses that word. I try to tell him that he just learns differently to other kids.

Every kid with autism is different. Ours is a bit more self-aware than some. Trying to make generalisations like this about ‘all kids with autism’ is, well…. the wrong way to go about understanding them.

My husband probably has a form of Aspergers. But sounds like jerv. He was reading very early, has a very high IQ, but has difficulty socialising with people he doesn’t know well, has no empathy and his sensory problems are sound related. He can’t manage money in any way and has very annoying obsessive/compulsive problems. We’re trying to get him diagnosed now, but with his work schedule, it’s hard to keep dr’s appointments. They don’t like giving the AS diagnosis without the ‘clumsy ’ symptom.

@cazzie When I was younger, part of my treatment in school was one-on-one Phys Ed, mostly stuff like playing “Catch” to improve my reflexes and coordination. If your husband had similar tutelage, it may be hard since that symptom has been remedied. I didn’t learn to ride a bike until I was about 10, but I can now stay upright on a stopped bike without putting my feet down and bunny-hop over curbs; two things you don’t normally see “clumsy” people doing. I guess my education worked, but it also removes that criteria from my diagnosis,

Very well said, @Dr_Lawrence. Like you, I never learned the art of protective coloration among my age peers (my classmates weren’t even actually age peers because I’d been moved ahead; I was younger). Fortunately as I got older I began to find myself among people who didn’t feel entitled to mock or criticize the way I speak. We do tend to gravitate toward one another.

@cazzie Just curious as to how you fell in love with someone showing no empathy?

I’m not judging, of course, and I’m sure there are lovely people with AS et al – like Stranger – who one could fall in love with – I’m just opeing up the conversation.

@jerv His coordination has always been exceptional, actually. Freakishly so. Like all kids here, he was put on skis early on and took to it like he was born with them on. Bikes, rollerblades, soccer, .... give him any sport, any musical instrument, and he’ll work it out and achieve a level of proficiency rather quickly. Not expert, but you can see it’s a natural thing for him. But he can’t manage money or clean up or discuss emotional issues and he obsessively hides behind his ‘hobby du jour’. Perhaps his is more a case of ADHD?

@zenele That’s a good question. His empathy is placed in things like the ‘big world picture’... he can get really depressed and cry after seeing a program about blood diamonds, or reading a book about the genocide in the Sudan. I love that he cares about such things and he’s interested in the world. But he doesn’t ask me much about my day, and can’t read when his kids need him most of the time, or when I need help with something and wasn’t able to give much support at all when my parents died, especially when my mother died. He didn’t even come with me to her funeral. He talks about himself and his obsessions (which are always very interesting) and he entertains me when we’re together with his stories. and he’s super sexy…..lol And he’s crazy about me. So, I guess it’s not that he doesn’t have empathy, but he really lacks intimate empathy.

Hate to break it to you, but he sounds like what most married women would call: a husband.

Most single women call them the first, and last, blind date from hell).

(You know I’m joking – this is serious stuff.)

@zenele Yeah, as I was writing that.. I was thinking you or someone would say that, but if that is truly the case, I guess I’m a real idiot and should be filing papers at the court house or just REALLY lower my standards and expectations. He was into me once, but I guess now… not so much.

I was joking from a funny perspective, not a personal one – as we don’t know each other. Am I to understand you aren’t together anymore? Welcome to Club D. – water’s fine. I hear 50% of the population have membership. – or am I off?

@cazzie If your hubby is like me; it’s not that we don’t have empathy, we don’t know how to appropriately express it. I learned very early that it was preferable to keep silent than express such things in a clumsy or inappropriate way and create another opportunity to be criticized.

I’m much better at showing how much I care than talking about it (eg: my ladys emerald collection). I was slowly learning how to do this; we had a practice of expressing our feelings to each other very openly and bluntly, trying not to make any assumptions or get offended at clumsy expression.

@stranger_in_a_strange_land Can you write empathetically? Can you then give her the letter? Could you also read it aloud to her? Perhaps you just can’t show empathy spontaneously out loud?

@zenele I had learned to verbalize such things to Meg (but only to her). Initially, that’s exactly how I expressed myself to her.

Oddly, if I had been too verbal in the early days, I’d likely have frightened her away; she’d just come out of a horribly abusive situation and was frightened of all men. In some situations, words are cheap. I showed her respect, gentleness, caring and protection without bullshitting her or making physical advances (she had to make the first move physically). I basically put my life on “hold” for four years, to protect and care for her 24/7.

I leave letters like that on her grave every few weeks.

@stranger_in_a_strange_land But isn’t “respect, gentleness, caring and protection without bullshitting her” = empathy?

Question – and we can move to PM anytime of course, or just tell me to shut the fuck up: are you in a new relationship – or have you tried yet? You do mention her death a lot, and I feel for you, I really do, but it can’t make it easier to meet someone if you haven’t “let go”.

In “real life” do you mention her as well? Her passing, her death, her grave?

Remember: you have the—ZEN: shut the fuck up option.—

@zenele I won’t speak for @stranger_in_a_strange_land , but I will say that it’s hard to find someone who has the patience to deal with us. Combine that with the difficulty of finding a romantic partner and then assess the odds of finding those traits in the same person and I think it safe to say that we have it a bit tougher. Of all of the Aspies I know personally, very few are in a relationship, and most do not even desire one.

If something ever happened to Kris, I would probably be in the same boat; even overcoming the grief would not automatically make it possible to move on.

Also, I think you missed the part about ”...it’s not that we don’t have empathy, we don’t know how to appropriately express it.”

@jerv I hear you. Actually, stranger and I have been talking for a while now – and as I mentioned to him I’ve been reading up on the subject as q result of a book that got me interested in the subject (the incident of the dog).

I simply asked whether you could (and each person is a “you”) write something down, then read it. It would be then learnt, in time. Like an actor learning his part.

I wonder if there are actors who have Aspergers.

Do you like being called an Aspie?

@zenele I have empathy, it’s just monumentally difficult to express it verbally. It’s a popular misconception that aspies lack empathy. The method you describe is exactly what Meghan did with me; I got to the point where I could express empathy to her (as I utterly trusted her), but couldn’t do it with anyone else.

The only actor I know of that has admitted to being diagnosed is Dan Ackroyd. Some of us are very good at studying and mimicking down to tiny details.

I use the term “Aspie” just as a shorthand expression; saves on typing “Aspergers Syndrome” and the acronym AS is only good as a noun. Sometimes I refer to myself in writing as autistic; people seem to understand that more readily and it saves having to explain the differences between AS and classical autism (and it’s accurate, since AS is part of the autism spectrum).

I can’t imagine having another relationship. I was a total loner for the first 38 years of my life, didn’t even date; it was an extremely serendiptitous circumstance that brought Meg and I together, I wasn’t looking for a relationship. Now, I really don’t want to “let go” of Meghan; I’d see any subsequent relationship as being disloyal to her. Even if I were interested, the chance of finding anyone who could understand or even tolerate me (face to face) would be de minimus. In real life, I don’t talk to anyone face-to-face unless business requires it, I never talk about my personal life. Even “talking therapy” is not an option for me, as F2F the only person I could open up to was Meg.

@zenele I have learned the part a bit too well and often find myself debating between chucking my brain into the toilet to act “normal” and feeling ashamed and dishonest for lying and holding myself back or admitting that it’s been a waste of time to learn social skills, telling the world to fuck off, and living with the results mostly unemployment and inability to get any sort of disability income.
Simple survival requires the former, though if I had the money to do the latter then I would in a heartbeat.

I find the term “Aspie” rather neutral. It’s akin to calling me dark-haired; descriptive and true but not derogatory the way “four eyes” would be even though that is also true.

Thanks for your thoughts guys.

:-)

@stranger_in_a_strange_land
@zenele
@jerv

Sorry…. I tried to respond and wrote some stuff…. but I’m alone and too sad now to talk about it.

@cazzie I’m here if you’d like to talk.

@jerv: I’ve been quite busy and haven’t checked in; I apologize for my delayed response…

The point I was trying to make was that there us great variability in cognitive capacity, perception, and social awareness among ALL people – regardless of whether they have a ‘diagnosis’ or fall into the ‘norm’ – and that is what makes this question essentially unanswerable. For example, I can’t recall at what age I knew that I was different from everybody else, because I was verbally abused before I can remember, so my perception was that I was always worse than everybody.

In my first sentence, I use the phrase “Developmental Differences” and state the great variability that exists especially for ASD.

Then I went on to address people whose cognitive capacity is limited for any reason. I did not generalize limited cognitive capacity to all people with ASD. I even went on to say that those with above average abilities can not really know what it would be like to be average. You chose to assume that I was lumping you in the first group and not the latter, when in fact my point was that none of us can be ‘lumped’ into any group.

I apologize if there was some vagueness in my word selections that led you to misinterpret the point I was trying to make, and certainly meant no offense.

@hearkat I figured that there was a good chance that is was a misinterpretation on my end I am prone to those so I didn’t get upset. I just wanted you to be aware of how it could’ve been (and for a moment, was) interpreted.
No harm, no foul :)