Autism self-awareness: how and when to expain to autistic child that they are different?
July 14, 2011 2:04 PM   Subscribe

For autistic mefites or parents of children on the spectrum: When did you (or your child) gain self-awareness of being autistic? How did that awareness change things?

What would have made that self-awareness easier? Would you have preferred to know (or have your child know) sooner?

Daughter is 11 and was diagnosed last year. We knew she had trouble socially, but were in denial about the cause. Autism is not severe, but she has definite social issues and developmental delays. She seems unaware that she is different, but is mostly happy.

Do we try to explain to her now and risk destroying her happiness, or wait for her to realize on her own?
posted by anonymous to Human Relations (7 answers total) 3 users marked this as a favorite
The show Parenthood dealt with this topic very well this season. I would highly reccomend it.
posted by k8t at 2:17 PM on July 14, 2011

Our son (also 11) sounds just like your daughter. He was diagnosed (Asperger's) at around age 9. We chose to tell him. We think it's important that he knows, especially because he's pulled out of the classroom for some OT and it would be weird if he didn't know why. Also, he saw several psychologists in the process of getting a diagnosis and we didn't want him to feel like there was something "wrong" with him. But we were also sure to tell him that it didn't change him and that he is still the super awesome kid we've always loved. His response? "Oh, ok". He did mention that he thought he realized he was a little "different" from other kids and he was happy to know why. It hasn't been a big deal for him - in fact, he chose to go to a sleepaway camp this year especially for kids with autism and had the time of his life. If your daughter is anything like my son, I think it's worth it to tell her.
posted by fresh-rn at 3:39 PM on July 14, 2011

How: With Kindness, Respect, Compassion, and Unconditional Love
When: When you and your partner have come more to terms with what it means to be have autism.

Having a child be diagnosed with anything can be really terrifying. Right now it doesn't sound like you are personally prepared to deal with your daughter's diagnosis ("denial about the cause", "risk destroying her happiness"). There is nothing wrong with being autistic or anything else. It is another state of being that has its pros and its cons, just like every other mode of being on earth, and I think that when you can view her diagnosis in a more positive way, you'll be able to communicate to her that, hey, just so happens she's got a really interesting neurological situation that explains why she is who she is, and that you love her dearly just the same, and that here and there you and your family are going to have to do things together to help her out, and that might be hard or it might be really fun. Treat the diagnosis as an opportunity to become closer to your daughter, not something so all-out destructive that you fear she's going to be unhappy for the rest of her life.
posted by These Birds of a Feather at 5:47 PM on July 14, 2011 [2 favorites]

Well, I was diagnosed with Asperger's at about the same age. My parents had books about autism laying about. Being a perceptive and slightly paranoid kid, I guessed (rightly) that they were about me- and worried. Not a whole lot, but I didn't know what autism really was. Having it explained was good.

If she's like me, she'd like to be told. I knew I was different; maybe she's further along the scale than I was/am- I was perceptive enough to realize I didn't get along with other people as well as most people could.

We think it's important that he knows, especially because he's pulled out of the classroom for some OT and it would be weird if he didn't know why.

Ditto. I was pulled out for speech therapy in Kindergarten and it freaked me out a bit. It's much better to know why something's happening, rather than worrying that there's something wrong with you that nobody has explained.
posted by BungaDunga at 5:49 PM on July 14, 2011

I evaluate kids with autism for a school district. For newly diagnosed kids that are old enough to read and comprehend we give them (and their parents) the book "Asperger's: What Does It Mean To Me?" by Catherine Faherty and Gary Mesibov. It's a workbook that the child and parent go through together. Highly recommended.
posted by Zebtron at 7:46 PM on July 14, 2011 [1 favorite]

Our son (age 8) was just diagnosed with Aspergers last winter, but we've known he was "quirky" since he was 3-4 years old. He also started verbalizing it himself starting as young as 5 ("I think differently than other people"). We decided just recently to tell him about Aspergers and he took it in a "well, no kidding" sort of way; I think it helped some of his anxiety about why he is the way he is and he is still very happy.

Can I tell you about Asperger Syndrome is a really good kid POV book that might help you out as well. Feel free to memail me if you want more recommendations.
posted by Wuggie Norple at 1:41 PM on July 16, 2011

I was diagnosed "late" (in my 20s; I am 32 now) and aside from currently being disappointed at the general level of ignorance that exists re. the autistic spectrum, I would say that my life is exponentially better now that I know what is going on with my brain in that regard. Growing up in the 1980s-1990s I remember vacillating back and forth between thinking I was perfectly normal and wondering what in the world was up with everyone else and thinking there must be something VERY WRONG AND STRANGE about me that nobody would tell me.

To an extent I realize this in itself is in fact "perfectly normal", but I also think the levels to which I experienced it were...atypical, to say the least, and I don't think I would have been diagnosed if the case were otherwise. Eg., by the time I was in sixth grade I was simultaneously attending a "gifted" program one day a week AND one of those pull-out things where they take you out of the regular class and send you to the "resource room" (for LD/"special needs" kids).

My parents seemed to regularly attend meetings regarding my educational planning and I also had what seemed like strange "rules" growing up (such as the one where I needed to make at least one social overture toward a classmate as a condition of using the computer when I was in junior high, and the one where I had to wash my hair in the sink BEFORE taking a shower so my parents could be assured it actually got washed). And so on.

Bottom line, even though I grew up ostensibly "undiagnosed", there were A TON of weird things that I experienced, and all the while (at least once I got to around age 11-12 or so, which was when certain kinds of self-awareness started kicking in) I felt extremely uneasy and was often prone to mentally "beating myself up" for being "bad at things I should know how to do automatically". When I was finally dxed with Asperger's (something that happened when I entered therapy in desperation during a period of horribly confounding employment/social issues) it was incredible the way all these "negative thought loops of futility and confusion" just STOPPED. Of course I was (and am) horrified at the idea of using AS as an "excuse" for just plain being a jerk, etc., and I endeavor never to do that, but it is SO MUCH BETTER to be able to go through life actually being able to identify reasons for what used to be "random meltdowns". I mean seriously -- in my early 20s I used to have stuff happen like going into a video store and leaving in tears because I couldn't find a video I wanted. My self-perception of stuff like that was that I must be a horrible person because I was "spoiled" or something. But knowing about AS let me realize that I probably had issues with expectations -- as in, if I had it in my head that something HAD TO HAPPEN A CERTAIN WAY and then it didn't, I would freak out. It wasn't until I had a framework for the possibility of having this tendency that I was able to do any sort of brainhacking that let me thwart it. And so on.

So, that was probably tl;dr, but bottom line is that for me at least, learning I was on the autistic spectrum has turned out to be primarily a useful informational tool. I definitely wish I had known earlier, though honestly if someone had tried to tell me when I was in 7th grade I probably would have disbelieved them and argued about it, as at that age I didn't have a fraction of the insight capability I have now. But learning in high school or thereabouts would have been nice and might have allowed me to seek/obtain better assistance with things like time management and certain academic issues I dealt with.
posted by aecorwin at 6:05 PM on July 17, 2011 [1 favorite]

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