Autism Vox

51 opinions for Does Your Child Know She or He is Autistic?

• Melody
  Mar 26, 2008 at 6:10 pm

  When I was diagnosed (age 10) my dad told me and explained it as a different wiring of the brain, and told me about Einstein and I think Temple Grandin (the school psychologist gave him a book). It was helpful because then it was easier to understand why the other kids were so mean to me when I didn’t do anything to them. It helped me reinforce the idea that it wasn’t my fault that I was bullied.

• Cliff
  Mar 26, 2008 at 6:35 pm

  Well, I definitely fell into the “wasn’t told” category. Mind you, the conditions were different, to the degree that telling me wasn’t really an option (90’s stigmatization was worse, and I might have spoken about it, theoretically throwing my chances at a normal education right out the window; the diagnosis was at the time technically stripped; UCLA directed my parents not to tell me).

  That, in the long run, was a pretty bad mistake with no faulted party, and in the short-term and long-term picture hurt my self-esteem in huge ways (and was, far more than the actual issues related to autism per se, a larger detriment to my happiness). I’d recommend highly that at some point that this is made clear (10 sounds about right, perhaps earlier, before middle school for sure), because otherwise the attribution errors are going to go through the roof. It might be better to be more presented with the information and allow him/her to make his/her own conclusions, but I can’t say for sure (never having had the real benefit of the flip side, but it makes sense to me).

  Cliff

• Leila
  Mar 26, 2008 at 6:42 pm

  My son is only 4-years-old, and I don’t know if he’s paid attention to our mentions of autism or the fact that he is autistic. I notice he listens to a lot of “grownup” conversations around him (by making an ocasional comment or beaming when he knows we’re proud of him for some reason) so I wouldn’t be surprised if he already knows he’s autistic, even without understanding the meaning of that word. I plan on having a conversation with him about his difference, as soon as I feel he’s able to understand and elaborate on it. I don’t think it’s a good idea to hide the diagnosis from a person, because he needs to know why he’s different and what causes him to act and think a certain way.

• Regan
  Mar 26, 2008 at 6:49 pm

  I believe that Eleanor is aware that she is different, or more accurately, how others see things may not be how she sees them.
  I don’t know if she knows she is autistic, and given that I don’t have immediate insight in her thoughts, I hesitate to give some paraphrase that could be completely wrong. Right now it is better to address issues in terms of the specific.

  Anecdotally and 2nd hand I know 2 children who have had a formal talk and take pride and comfort in knowing, and 2 for whom knowing became a focus for feeling like they were out of control of themselves and under control of “autism”. I think it is dependent on the person and how it is addressed.

• Emily
  Mar 26, 2008 at 7:09 pm

  I know TH is aware that he is different because he has told me that he is, but we have not explicitly discussed autism. I need him to be able to intellectually understand a little bit about developmental processes and brain wiring, I think, before I get into that explanation. I think he’s going to be ready in a year or two. The school says that in second or third grade, the other children may start becoming more aware of things like the aide that TH has, etc., and that awareness may end up precipitating the discussion anyway.

• jypsy
  Mar 26, 2008 at 7:27 pm

  Absolutely my kids know, always have.

• VAB
  Mar 26, 2008 at 7:35 pm

  Our guy knows. We don’t make a big deal out of it, but he does know that the trouble he has with language is part of autism. Whenever it comes up, however, we are always sure to point out that his knowing the populations and capitals of most of the countries in the world and his abilities with math are also part of autism. Also, when we are talking about Einstein or Bill Gates or David Byrne or whoever, I’m always sure to mention that they are autistic. Our intention is to present autism as being neutral, like having red hair, but we probably err on the side of talking about it as a positive attribute — after all, our favorite person in the world is autistic.

• Emily
  Mar 26, 2008 at 7:48 pm

  VAB, that was nicely said.

• Karen
  Mar 26, 2008 at 8:06 pm

  Thank you, VAB. My Pete is 7 (tomorrow!) and I want him to know…yet I don’t know the right way to tell him without it seeming negative. I also don’t think he’s quite ready to understand it right now. I shall remember your words when the right time comes.

• El Senor
  Mar 26, 2008 at 8:13 pm

  Do you think your kid will tell you you are a nitwit for not helping him?

• B
  Mar 26, 2008 at 8:23 pm

  I’ve tried to have ‘the talk’ with my kid, but she doesn’t understand the concept at all. She’s 10. My friends are shocked that she doesn’t know. I find it difficult to explain that I’m not keeping anything from her. For now, it doesn’t really matter. She’s not really self-aware in any way that this information will make a difference… but I do find this topic interesting.

• Daisy
  Mar 26, 2008 at 9:09 pm

  Amigo knows. We’ve used his knowledge to identify behaviors as such: “That’s your Aspergers talking.”

• Owl
  Mar 26, 2008 at 9:42 pm

  My tendency would be to say if the kid is old enough to realize they are different, they are old enough to be told. The earlier they are told the more time they have to make a positive psychological adjustment (that is if parents are going to be part of encouraging it instead of using it as a weapon to say the kid is messed up) and the less time they will have to spend later sorting out what they might have done differently or thought differently about themselves if they had known. I know when I discovered my Asperger’s syndrome I was pretty much useless for a week or two as I reanalyzed everything with the new insight, wheras I had already long ago made adjustments to knowing I was ADD. You can’t self help your self if you don’t know, and putting names on what you know but can’t identify can be empowering.

  Of course again all of this would need to be adapted to a particular level of cognitive reasoning for a child. But I’d be afraid of assuming they couldn’t tell they were different and weren’t concerned about it. Just because a child seems completely lost when it comes to caring about some things doesn’t mean there aren’t other issues they care more about.

  And there isn’t much a child can lose with a kanner style autism diagnosis by telling their peers that they haven’t lost within the first 3 minutes of walking in the door. Asperger’s syndrome style that’s a more significant issue, but again if the child has learned to be aware of the difference they may be more capable of secretiveness than you’d guess by how readily they comment on the weight of the elderly women in the grocery store or of repeating loudly what their mother told them about the quality of the produce. A prime example may be the secretiveness with which they hold their opinions of how different they are or how well they fit in or not.

• Club 166
  Mar 26, 2008 at 10:55 pm

  We were always open about talking about adoption right from the start with our kids, and followed suit when it came to autism.

  It’s just something that is. We try to present it as something that explains some of his differences, in the context that everyone has things that make them different, and his happens to have a name. We don’t let him use it as an excuse, though (unless it’s really valid).

  Joe

• shawng3k
  Mar 26, 2008 at 11:30 pm

  My 8 year old knows (but how much he understands is debatable…he’s 8 after all). He’s even tried to gain “sympathy” from it. One day, after repeated exhortations to clean his room (which he usually never has a hard time doing, nor does he usually give me a hard time about getting it done), he looks at me and says “Mom, I can’t. Its too hard! I have an Autistic brain!!” My reply “I’ll ground you and take away computer time, if you “Autistic brain” me again young man.” That was the only time he’s ever tried to use it as an excuse…so yes, I think he gets he’s different to some degree LOL.

• David N. Andrews M. Ed. (Distinction)
  Mar 27, 2008 at 1:09 am

  Yep. Mine knows… and she has no problem with it.

• Kristina Chew, PhD
  Mar 27, 2008 at 1:59 am

  Just by means of comparison: My husband Jim has, as I’ve noted, ADHD, sometimes quite severe. When he was in high school, school personnel flat-out told him that he had “minimal brain damage”—-not exactly a kind sort of sentiment! (Even for or from the nitwited.)

• Nicky
  Mar 27, 2008 at 3:54 am

  I’m the Autistic one in my family; my wife and daughter are neurotypical. So instead of the “Why you’re different from other kids” conversation, we’ll eventually be having the “Why does Daddy rock back and forth” and “Why can’t Daddy drive a car” conversation. I wonder how old she’ll be when she starts to wonder about such things.

• David N. Andrews M. Ed. (Distinction)
  Mar 27, 2008 at 4:14 am

  “I’m the Autistic one in my family; my wife and daughter are neurotypical.”

  Ah. When I was married before, the whole family was autistic (in that we all have diagnoses)… we used to look at non-autistic family members and try to figure out if any of them knew they were different :P

• Norah
  Mar 27, 2008 at 9:42 am

  More or less my whole family are autistic, so I was in a ‘had no idea and didn’t think you were odd in any way’ category than a ‘didn’t tell you’ category. I did know I was different from others my age when I started coming into contact with them.

  The other way around: I wish I had asked my mom “What am I?” (since she didn’t have anything to tell me, with no diagnosis) instead of just asking myself that question over and over (which was rather futile, and with regards to reading books about it: I had no idea there even were any until I was 11 or so). Then maybe we’d have started looking a lot earlier, or at least gotten my diagnosis earlier, when we actually figured it out, instead of waiting another 12 years or so.
  I never let on anything was wrong, even when there was, eventually causing me to become very depressed and contemplating suicide seriously (which I’m by now long past again already. Fine now).

  Just knowing for myself would have made a big difference to my self esteem and functioning, since now I had a lot of other labels attached, like lazy and shy, that actually were rather harmful, caused me to think I was stupid, etc, and mademe less likely to ask for help when anything went wrong.

• Rochelle
  Mar 27, 2008 at 9:42 am

  All of those who’ve commented that they or their children knew/know they are autistic, can I ask how old you/they were?

  My son is 8 and he’s much too “in his head” to understand that he’s different from his peers. I’m not sure if he’ll understand what “autism” is for sometime…

  I’m curious when you/they were able to recognize that you/they “different” cognitively from your/their peers.

  Thanks…

• Norah
  Mar 27, 2008 at 9:45 am

  And something I forgot:

  I’d definitely advise people to tell their child at a young age. Especially if they’ve already reached the point where they have met others their age and have realised they are different; don’t wait too long after that (that’s assuming they let you know they know, of course. I didn’t).

• Norah
  Mar 27, 2008 at 9:50 am

  and to Rochelle:
  I knew from the moment I started being in prolonged contact with groups of others my age (preschool). Even if I couldn’t put it into words until I was 10 or so (”I am different.” It took me until I was in my twenties to actually be able to specifically see how exactly I was different, even now I have a lot of trouble defining and then wording the ways I do things in my head that are different from the way others do them).

  Even if someone doesn’t seem to know, it’s very possible they are aware of their difference.

• Beth
  Mar 27, 2008 at 9:59 am

  We had many small discussions spanning over about 2 years.
  Nicholas is the oldest of 3 kids (other 2 are NT) and would ask questions like “Is Joe going to take a pill when he is 6?” and “Is he going to take the bus to school like me?” I would explain that his brain worked a little bit differently and that the pill helps his brain focus and pay attention better and that the small class is better for him to pay attention since it’s less noisy. I asked him after he began first grade (he was in general ed kindergarten while being evaluated and then partial inclusion since then) which class he liked better. He told me that he liked his new class better because he was a “stranger” in kindergarten.
  Last summer, I actually talked to him about Asperger’s (he had turned 8) after I found a book called “All Cats Have Asperger’s.” We had just gotten a kitten and he was in love with it so it seemed like a gentle segueway. He wasn’t bothered by the fact that he has Asperger’s per se but was upset that no one else in my family has it, too. He also told me that he doesn’t want the kids at school to know in case they make fun of him. I told him that he does not have to tell anyone at school unless he wants to. Since then, he has told me a couple of times that he doesn’t mind having a brain that’s different but that he still doesn’t want to tell his friends.
  I think it’s best for him to know at a young age because it was obvious to me that, at least on some level, he knew he was different when he was in kindergarten but just didn’t know why.

• jypsy
  Mar 27, 2008 at 10:13 am

  I diagnosed Alex at 2, that was confirmed by the “experts” shortly after his 3rd birthday so I’m guessing he was “told” when he was around 2 or 3. I don’t know when he understood what that meant. (He was also “told” he was a boy at a very young age - at what poinbt do regular children really “get” that concept?) My Aspie son was diagnosed at 9, he would have been told then. 9 years later he’s still getting to understand what that means to him.

• FXSmom
  Mar 27, 2008 at 10:16 am

  My son wouldn’t even care. He is very severely affected. My daughter on the other hand asked me one day about it. I had to be honest. So I did tell her and we had a talk about it. It wasn’t easy and I wasn’t ready for it. She was afraid she would turn into her brother but I was able to ease those fears. My biggest concern, other than frightening her, was that she would use it as an excuse. But somehow I found the right words to let her know that it made her stronger because she had to fight against it every day. She was like a superhero. Never once has there been an excuse. :)

• Eleanor
  Mar 27, 2008 at 10:56 am

  My son, age 7, knows about both autism spectrum disorder/hyperlexia as well as ADHD. I think he understands the ADHD better than the ASD, though, partly because we have a really good book explaining it (the hyperlexia, of course, helped with him reading that) and because several other kids in his class have ADHD.

• Amanda
  Mar 27, 2008 at 11:50 am

  When I was first diagnosed, I heard the word, but it was rarely discussed with me directly, and the way the word applied to me was not really described.

  The terms people did use were so vague that they made no sense to me. I could understand “crazy,” but autism wasn’t “crazy,” so then what was it? But I couldn’t even formulate the question, it would’ve required both more ability to consistently and directly state my thoughts than I had, and also an ability to distinguish which words to pay attention to.

  I remember reading a book at the time, and it did describe my experiences in a lot of ways (in fact, more than any ever had), but even that didn’t tell me a lot about what autism was.

  I also remember being told directly, that I was a lot like this woman my psychiatrist had met, who thought in pictures and designed cattle chutes for a living. Although I am not that much like Temple Grandin in reality (as autistic people go), she was the only one he knew.

  And his descriptions of her did not in any way make enough sense for me to be able to figure out that he was talking about an autistic woman, or what “autistic” referred to. Nor did any words I’d ever heard around autism, given that they were all things like “in your own world” (try taking that literally), “not knowing the boundaries of yourself” (what boundaries?), “pervasive developmental disorder” (of which I could only understand one word in that context so the whole thing sounded like nonsense to me), “everything coming in at once” (a phrase that got to annoying me to the point of near-violence after awhile, because people repeated it with a tone of ‘understanding’ around me without seeming to understand anything of what was going on with me, and I didn’t really know what the phrase meant to refer to, so I felt like I was being condescended to), etc.

  I remember being told what I was thinking, but nobody ever explaining what parts of my appearance made them think I was thinking that.

  For instance, I remember being told directly that I clearly had no interest in starting conversations with anyone, but nobody would tell me why they’d come to this (false) conclusion.

  Nobody ever did explain to me precisely where people’s ability to see things about me ended. So I grew up thinking of my feelings/thoughts/etc as external to me. When I did make distinctions between what people thought they saw and what was actually there, I guessed very wrong about what they saw in the first place.

  And that last sort of understanding is required in order to understand why people think you’re autistic, because people thinking you’re autistic is based on them noticing specific things about you, and often also based on them not noticing certain things you’re actually thinking (because most theories of autism get what we’re thinking completely wrong).

  Personally I think autism should be used and explained completely matter-of-factly like left-handedness is, and that hiding it is a recipe for disaster, because if the person doesn’t understand what autism is, and how it applies to them, or does not understand why they are different, then they will come to their own conclusions and some of those conclusions can have pretty awful consequences. I’ve heard of this both in people who grew up undiagnosed and in people who grew up diagnosed around people who never talked to them about it in a way that made sense to them.

  Certainly my level of comprehension of a lot of things at the time would have made this very difficult (I had a very advanced ability to repeat things back in a manner that seemed to indicate understanding, but my actual understanding level in many areas was quite low). But I still think a better attempt could’ve been made, if this were happening today with the amount of information there is about autism out there.

• Amanda
  Mar 27, 2008 at 11:53 am

  Oh and also, by the way, never, ever, ever assume that a “severely affected” person “won’t care” that they’re different.

  I don’t know where that comes from, other than some bizarre notion that if a person keeps doing something that is unusual in certain ways, the only reason they’d keep doing it is because they don’t understand something.

  I have experienced having both my level of understanding considered more than it was, and less than it was, in different situations, and I know a lot of people who knew perfectly well they were different and cared a whole lot, long before anyone would have thought they did. If you wait until someone seems to be able to understand (with a value of “seems” that translates as “I’m making a huge bucketload of assumptions but I’m not going to admit this to myself”) then in most cases you’re waiting until the damage is already done and that makes it more complicated.

• Kate
  Mar 27, 2008 at 11:55 am

  My son was finally diagnosed when he was twelve-ish. The preceding three years were hell due cluelessness on everyone’s behalf (mine, the school system, his doctor). He knew something was wrong since he was having such difficulty in school, with friends (or should I say without friends), bullying, etc. When I finally found some of his symptoms matching up with Asperger’s Syndrome, I took him to a center that specialized in that and had the diagnosis confirmed. Depsite the fact that the diagnosis explained much of what my son was going through, he was quite anxious and angry - he didn’t want to talk about it at all. It took a couple of months of gently introducing the topic and backing off until he was comfortable about discussing it. Like others here, I just explained that he was “wired” a little differently and therefore learned and saw things in a unique way and I loved that about him. He also saw a great therapist who worked with him on his self esteem. This month will be a milestone (that I am a little apprehensive about) because in his health class he will be doing a report about autism! I don’t know if he is going to “come out” to all his classmates but he did tell two other kids who wanted to pick autism as thier report project that they couldn’t have it since they didn’t have autism but he did : )

• Emily
  Mar 27, 2008 at 12:23 pm

  I should clarify that TH and I have discussed that people have differences in their brains and that his brain is different in some ways from some of the kids in his class–which he already knew, so this wasn’t a surprise–we just haven’t put a label on it for him. He knows that his brother, for example, has a different kind of brain, too (he has ADHD), and we none of us really focus on that too much because it’s just not that interesting within our family group. TH is happy, and he knows that his way may differ from the “typical” way, and he’s happy with that, too.

  We rarely label personal attributes around here–sometimes, we refer to the fact that everyone but me has blond hair and blue eyes, but otherwise…”different” isn’t that different in our family, so it’s not something anyone comments on. Our sons MAY know that I’m female and no one else is, but that doesn’t even seem notable to them. Our biggest concern is having him prepared for questions/observations/teasing at school, so we’re going to have a unit on brain development and differences this summer for him and his brother as part of our summer adventures.

• Owl
  Mar 27, 2008 at 1:02 pm

  I think I became aware of how different I was by around 2nd to 3th grade. Not sure, I’d have to look up old class pictures to see where it fit in- been a long time. If I’ve got everything straight in my head it was about 4th grade I finally gave up on trying to achieve friendship from my peers because of repeated failures and or bitter turn around of people who used to be ‘friends’ with me. So that probably places beginning to notice I was different in second or early 3rd grade. The most poignant memory is the childish pranks kids played in the lunch room, stealing each others food etc and I couldn’t figure out or maintain the group affiliation to see this as anything but a cruel thing to do and I’d consistently tell the afflicted child who had their food or give them some of mine. Or some other people I knew whose favorite activity on the school play ground was to run up to someone and kick the ball they were playing with as far away as possible. I just couldn’t maintain the group affiliation to think it was somehow something I should go along with and I’d try to stop them or fetch the balls back. Or in 4th grade a group writing project where we were supposed to “grade” each other’s participation in writing and editing and I gave bad grades to a lot of the students who failed to have any useful or constructively critical things to say about my writing. They weren’t being mean to me, just weren’t doing the entire editing thing. Then I can’t remember if the teacher told the students what grade I had given them or if I was stupid enough to tell when asked. That lost me a lot of goodwill and was also about the point I stopped trying and became more bitter and reclusive. By 5th grade I was in clinical depression that didn’t lift until my family started homeschooling and my parents never knew what was wrong. Those were the kind of interactions I just didn’t discuss with anyone, not to mention the extensive teasing and bullying that went along with such social ineptitude.

• Brett
  Mar 27, 2008 at 2:18 pm

  I remember a few years back, when NBC was running one of their Autism weeks, a friend’s teenage Aspie was watching and commented to the effect, “I’m glad I’m not autistic, I don’t think I could handle it.” The thing is, he had a diagnosis and was in a private day school for kids with “disabilities.” I was shocked that he didn’t know.

  I don’t know when we told Z about his autism. It probably came up about the same time we were explaining it to his NT younger brother.

  Like VAB, we present it as a neutral, just the way he is, much in line with Joe’s approach:

  “It’s just something that is. We try to present it as something that explains some of his differences, in the context that everyone has things that make them different, and his happens to have a name. We don’t let him use it as an excuse, though (unless it’s really valid).”

• Kristina Chew, PhD
  Mar 27, 2008 at 3:02 pm

  A thought I’ve had in reading everyone’s responses—-each one really says a lot—-is the extent to which kids in special ed and with disabilities see a lot more “difference” on a day to day basis. (Others have made the same point before and better than me.)

• Leanne
  Mar 27, 2008 at 5:08 pm

  I’m so glad so many people left such specific and informative comments.

  I think I need to take the next step and have a formal conversation with Patrick. I say he’s autistic in front of him and it’s definately matter-of-fact in our lives, but so far he can’t express that he understands that he’s different from his peers in school. Thank you for reminding me that because he can’t express understanding doesn’t mean he doesn’t understand.

  His older brother knows Patrick’s brain is different but I’ve never explained that to Patrick. Now I’m thinking that even though it doesn’t seem like he’s ready maybe he is and I need to feel that out with him. He’s 6, so I’m not in a hurry, but I also don’t want to wait too long.

• Amanda
  Mar 27, 2008 at 8:12 pm

  Brett– there was one point when I would have said nearly the same thing, post-diagnosis, but before understanding what autism was.

• Regan
  Mar 27, 2008 at 9:09 pm

  OK.
  So if you are in the position of having a conversation, then it is a matter of tweaking and choosing carefully how to present it.

  If a traditional conversation is not possible then how do you present the topic in a comprehensible and respectful manner? Nuts and bolts.

• Rochelle
  Mar 27, 2008 at 10:37 pm

  Thank you all so much for all your responses and for going into so much detail. I asked for completely selfish and personal reasons–I’m still personally wrestling with how autistic my son is. (He’s not classically autistic but he’s not Asperger’s either.)

  And, I don’t think (of course, I could be wrong) that he knows he’s different from his peers. While he’s in the second grade, I don’t get the feeling that he has any idea that he’s autistic or different from his peers. I *think* he knows that his classmates are doing more difficult and complicated work. I don’t think he has any kind of reasoning to understand that other people would think differently. I’m not sure he even understands what it means to “think.” There’s a level of self-awareness and consciousness that I don’t think he has at the point.

  I’m honestly of the opinion that he looks at me, his brother, and his peers and thinks we’re the ones who don’t “get” it. I just imagine he must look at me and wonder why anyone *wouldn’t* want to watch Blue’s Clues day and night?

  Thanks, again. It was all very insightful.

• Amanda
  Mar 27, 2008 at 11:13 pm

  I don’t really like the idea of having a Big Conversation about it, like most parents have about sex. I very strongly favor using the word appropriately and in context the same as all other words, and with explanation of what it means where necessary. Like, as others have pointed out, “boy”, or “left-handed”, etc. Then it becomes the same as any other thing that makes people differ from each other.

• B
  Mar 27, 2008 at 11:39 pm

  Amanda, you said
  “Certainly my level of comprehension of a lot of things at the time would have made this very difficult (I had a very advanced ability to repeat things back in a manner that seemed to indicate understanding, but my actual understanding level in many areas was quite low).”

  My question to you is, when did your actual understanding level become what it is now? I find you are extremely reflective– more than most people, really.

• Sarah
  Mar 27, 2008 at 11:42 pm

  I second Amanda’s comments about Big Conversations. My parents meant well, I’m sure, but making a big deal out of taking me out to one of my favorite restaurants without my sister and then telling me about Asperger’s Syndrome for the first time in my life was a little much. Worse still, they dragged up unpleasant incidents from the past to “prove” the diagnosis. I didn’t even want to think about it for about a year after. I think my parents might have realized they’d gone about this the wrong way, because they didn’t mention AS again until I brought it up in a letter to my mom, and my dad still doesn’t talk about it much. In retrospect, it would have helped if they had gone about this in a more laid-back way, and also if they had provided me with written information straight off, instead of just describing AS to me in their own words and referencing people who I really don’t relate to, like Bill Gates and an uncle of mine. For an older teenager who expresses interest (I was 17), it may also be a good idea to talk more about how the diagnosis was made. For a long time I thought this was just a random diagnosis made by a psychologist who met me two or three times. It turns out she was an Asperger’s specialist, and that she also received input from my parents and a teacher in making the dx. I hadn’t been told that. Having been misdiagnosed with other conditions (AD/HD) in the past, I was skeptical of this information at first. Providing information and emphasizing that AS is not a disorder but a difference is key IMHO.

• Kristina Chew, PhD
  Mar 28, 2008 at 1:12 am

  I don’t think we’d have a “Big Conversation” with Charlie on this—-talking about autism, or about being different and how one handles that, are just part of the daily conversation in our house (in reference to Charlie, and Jim, and me—a while lotta difference goin’ on here, if I may say so).

• Kristina Chew, PhD
  Mar 28, 2008 at 1:12 am

  I don’t think we’d have a “Big Conversation” with Charlie on this—-talking about autism, or about being different and how one handles that, are just part of the daily conversation in our house (in reference to Charlie, and Jim, and me—a while lotta difference goin’ on here, if I may say so).

• Norah
  Mar 28, 2008 at 9:07 am

  I don’t like ‘big conversations’ either. My parents never did that for any topic. They more or less just presented each topic casually as it came up (like sex when my mom got pregnant with my youngest brother: “Fine, we know how he’s going to come out, but now: how the heck did he get in there in the first place, huh?”). Sometimes they’d get us interesting (library) books for kids (but still accurate and detailed) about a topic. It also wasn’t just one conversation, things came up several times at different ages.

• Bink
  Mar 28, 2008 at 9:30 am

  When my child was almost six, one day I said to her, in the course of conversation, “you know that you are a kid with autism, right?” And she said yes, she knew that. My guess had been that she had overheard enough conversations to figure it out and I was right. We try to talk about it honestly and positively, but don’t dwell on it.

  Also, parents — check your school yearbooks. In my child’s yearbook, the teacher who assists her is clearly labeled as the Autism Specialist. Any child who can read and attends that school therefore knows my child is autistic, so I cannot imagine trying to pretend it isn’t so or imagining my child might not know. I think that pretending it wasn’t so would only lead my child to wonder what was so awful about her that it could not even be spoken of.

• Marla
  Mar 28, 2008 at 12:28 pm

  I am with Club 166 on this one. We started talking about adoption and sharing M’s birth story from day one. Sharing what is appropriate for her age. We do the same with her autism, chromosome disorder and cyclical vomiting syndrome. M does know that she copes differently and has difficulty keeping up with children her age. Even though we discuss it I don’t know how much she really understands. But, we just keep on talking about it. I want her to feel confident communicating her health and learning needs as best she can and I think for her knowing about her diagnosis is important.

• Amanda
  Mar 29, 2008 at 8:23 am

  Well… my comprehension of a lot of things was pretty decent, but my comprehension of many aspects of language (or even some of the concepts required for language) was pretty crappy and intermittent, especially compared to what it looked like at times.

  What I needed was a combination of a number of things (some of which I can give longer descriptions of, some of which I can’t):

  Time to let assorted information settle into my brain, a process that is not conscious and can take a very long time. (I have had spans of decades between hearing words and understanding them, for instance, and there’s still at least one instance from when I was about three that I am very conscious of the sound, can replay it at will, but I still can’t understand the words.)

  Context, and lots of it.

  Understanding that the way I understand something isn’t necessarily the same as someone else does, and that therefore pushing for immediate and conscious understanding is unlikely to produce long-term results. Understanding generally has to come about by a longer-term process, but when that does happen, I’ll understand something in more depth than usual.

  (That last one accounts both for my total lack of understanding of a lot of things that I describe, and the observation you made that I seem more “reflective” than most people. The “reflection” takes place differently, and so does the processing of information that leads to it. You won’t get immediate conscious comprehension of a lot of things, but you’ll get extremely detail-rich long-term comprehension that I’m often not even aware of until something triggers it.

  I suspect these are two sides of the same coin, rather than a contradiction. There’s only so much a person can hold in conscious memory at once, and only so many connections that can be made between things that way, and I don’t have as many of the shortcuts as some other people can take to understanding. But I think those shortcuts, which have many advantages that I lack, come at their own price.

  And of course I needed the actual information to steer me at least a little into how to look at these things, because otherwise there would be patterns I just plain wouldn’t see.

  I also needed time away from being pushed to use a certain kind of understanding (that is not sustainable to me) to the absolute limits, which meant that I was too busy doing that to really understand a lot of other things. This includes using certain abilities that took substantial amounts away from all other abilities in order to use them.

  I don’t know if that answer is complete or not but it’s all the explanation I can give right now. I know what I mean, though.

• Momto4kidsny
  Apr 3, 2008 at 2:43 pm

  My son is 6. We have started talking about it with him in a postive light but it’s more of a passing talk than it is a big talk like one may have for the subject of sex or drugs. He is letting us know that he knows he is diffrent and wants to know why. I’m finding that I am stumbling when it comes to telling him why. And looking back it’s because I am afraid to put a lable on him even though we already have it.
  I must say though that this Autism Awareness blogging thing has brought to me many rescources and I hope I can have this talk in a better manner for my son. I need to become more accepting of the “lable” before I can even begin to help my son to accept it.

• Brett
  Apr 3, 2008 at 3:35 pm

  A related question for the group: Do you include your autistic child in IEP meetings? Obviously, some sort of discussion with them is necessary before doing that.

• Does Your Child Know That It’s Autism Awareness Month?
  Apr 4, 2008 at 4:09 am

  […] few days ago I asked does your child know that he or she is autistic?—-and now, after Wednesday’s World Autism Day and April being Autism Awareness Month, […]

• Bonnie Sayers
  May 10, 2008 at 12:48 pm

  Nick has known for many years that he is high functioning and likes to read books and review items with me and give his take on it. Since he was mainstreamed in gen ed from 1-5 he did not see other kids like himself and no one in class knew about it being on the spectrum. But going to social skills for a year and going to camp for seven summer sessions he has learned there are degrees of autism and it has helped him understand his brother better and know that Matt is not the only one like this. In fact, he has seen some girls at camp that are worse and that made him feel better knowing Matt does not bite himself or throw knives at other kids. It has helped his overall awareness of autism and to see his differences. Sometimes he does say he hates autism.

Have an opinion? Leave a comment:

• Use this area to discover new blogs and content in the b5media network.
• Beauty & Style
• Business
• Celebrities
• Entertainment
• Health & Wellness
• Lifestyles
• Music
• Sports
• Team Blogs
• Technology
• Travel & Culture
• Video Games