When do you explain ASD to your kids?

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In another thread, I started a discussion that was inappropriate in said thread...
I figure the polite thing is to turn it into a thread of its own.

For me, I wasn't diagnosed until I was 34, so I have no idea what it would be like to have the 'answer' to why I was such a freak from the very start.

Part of me thinks that there ought not to be a need to explain these things, kids should have the freedom to grow up without being bullied or treated badly by others. If each child would be cherished by their peers for their unique personality, rather than osticized (sp?), I think the world would be a better place.

However, reality is not like that. Given what I know today about autism and AS, I only wish I had known from the start. I am really jealouse of my sister, who has cerebral palsey (sp?), and have known her entire life. Who got vocational therapy and all these other resources thrown at her (okay, nothing was 'thrown' at her, our mom had to fight difficult battles for each and every form of support), while I have always have had to fend for myself. I was the 'normal' kid, the one with no problems. Riiight...

I think the discussion with babies and toddlers would be similar to the ones my mom would have with my sister and I about my sister's disability... Everyone has the same worth. Physical or mental abilities are irrelevant. Everyone loves, hurts, laughs, cries, are good at some things and less good at other things. Even if you can't do certain things (ride a bike in my sisters case), there is no reason why you can't do other things (my sister was a fiend at boule), or find a work-around (my sister rides a trike like a pro).

I don't pretend to have any idea what it is like to have a child or how to raise one, and I definately don't intend to ruffle any feathers, it's just really interesting to hear what you pro's out there think. I am certain my life would be different today if my family had known about my disability from the get-go, and I think I would have been a different person with different opportunities and made different decisions, if I had had the knowlege from an early age.

I have mixed feelings about it.

On the one hand, surely my folks would have cut me a little more slack than they ever did, because, while they knew from the beginning I was not normal, they were determined that since I obviously wasn't mentally ret*d, they were going to by-God MAKE me normal. Of course, it didn't "fix" me, because all their pressure and discipline did nothing to alter my neurology, so I just ended up feeling that no matter what I ever did, I was going to be nothing but a disappointment to my parents, because whatever it was they wanted their son to be, it wasn't ME. If they/we had known, at least the pressure to be someone I could never be would have been less, and that would have to be more psychologically and emotionally healthy.

On the other hand, I worry that if I had known, not only would it have only contributed to my natural tendency toward depression, self-pity and isolation, I might have used it as an excuse to sit and wallow in my handicaps and never get out in the world and try to function. I might have missed a great many opportunities and experiences (both good and bad) if I had been allowed to put a tag on my handicaps and say "I CAN'T do _______, there's no use trying. My Autism won't let me." Truth be told, there ARE times when you simply CAN'T do something because your Autistic brain just won't cooperate or throws up an invisible wall, but if I had been allowed to convince myself that I could NEVER do any of those things, well, then I certainly never would have.

So, at the end of the day, I don't know if early detection would have been a help or a hindrance, it might have been either, or both, but there's no changing it now. I am what I am - but it is cathartic to know finally, that those functional inabilities that frustrated, hindered, maddened and caused me such endless despair over the years were not simply personal flaws in me as an individual, but handicaps every bit as real as I experienced them to be and that they aren't limited to me - they have a name, other people are struggling with them, too, and its NOT OUR FAULT.

For one thing, many of us didn't know either for quite a while - my own son didn't get a diagnosis we trusted until he was 10. We knew there was something, just not what, exactly.

We did tell him at that point because he and other children had already started to give him much worse labels. We struggle right now with the idea of disabled/different - I do believe he will be different his whole life, and that he's somewhat disabled right now, but I don't think he'll be disabled his whole life (not that there is anything wrong with that - just that DS seems to be able to adapt given enough time.) Fortunately, we had good experiences with both my son and the other children - once they had a frame for his behavior, they were less frustrated and more understanding, at least in most cases.

One issue that came up in that thread that hadn't occurred to me - DS had a strong sense of privacy when we told him, and made good choices about disclosing, but I could see where that wouldn't have been the case when he was younger (we had a real struggle when he was a 2nd or 3rd grader and he discovered - by accident - the word "suicide.") In that case, I might wait and find alternate explanations that were less specific. There is also the possibility of prejudice, so you kind of have to know your community (see what happened to blogger Emily Willingham, here: http://www.emilywillinghamphd.com/2013/ ... istic.html It might be difficult for a child to know but not be able to tell anyone.

DS was extremely resistant to learning about his diagnosis; we finally left books where he could find them and he figured it out and then we could talk about it, but he absolutely refused to discuss it with us.

I wish my parents told me about my Dx when I was ten and I also wish I was told before my sister was.

I was formally diagnosed just over 3 weeks ago, with HF Autism (formerly known as Asperger's).
I have a 13 year old daughter who lives with my ex wife.
My ex wife seems to have taken news of my diagnosis as an excuse to resume her reduced communication and her low opinion of me.
I'd love to tell my daughter of my diagnosis, but don't have the rapport I'd like to, because of her age, because of the living arrangements, and because I don't want to cause a stronger rift.
I've already lost all contact with my family, as they have treated me as an outcast since I had a mental illness incorrectly diagnosed when I was 17.
I'm 41 now, and still don't know who to tell, when to tell them, and how to do it without either shocking them, or saying it so offhand that it seems like it's nothing.
It's clearly not nothing, it's been something that's made my life difficult forever, just I only just got a formal name for it.
I don't want my daughter's life to be worse than mine, however I suspect teachers are much better at helping out individuals who are a bit different than they were in my day.
I ended up hiding in plain sight, as the teachers could never relate to me, just like the other students (or at least most of them).
I think how and when you tell your kids is as individual as the family scenario.
In my case, at least having told my ex, means if my daughter goes for diagnosis, she can say her father has been diagnosed, so that will make diagnosis easier.
Perhaps that's the best I can do for her, at least for now.

I have thought about this quite a lot, especially concerning the youngest kid whose testing we are waiting on. If he is diagnosed, what do I tell him? What do I tell others? He definitely behaves outside of society's norms pretty frequently, sometimes requiring some short explanation, even just of the, "No, I am not killing him here. I'm holding him through this meltdown to keep him from hurting himself." variety. He really doesn't care how he compares to other kids right now. Frankly, he'd be quite happy to never see another kid under about 8-9 years old, and he really doesn't even understand that they are other /people/ and not toys that play wrong. I just can't see him understanding it right now.

I was definitely different as a kid. I feel that if I was a kid today, I'd be diagnosed on the autism spectrum. I think of things that happened, particularly when I was in high school (past my ability to compensate fully), where it would have been incredibly better for my mental health to have a diagnosis. On the other hand, when I was a little kid, my parents just kind of took me as I was.

I was reading a blog (I can't remember which one, sorry) of an adult diagnosed young woman, who was talking about this. She said when she was a kid, she had this toy that was shaped like a clown or something and you put weights on either hand of it and if they matched or they matched the math problem it was asking, then it made a chime, if they didn't, then it would buzz. She liked to make this toy sing in patterns of chimes and buzzes, and her parents thought it was cute, and didn't really care if she played with it the "right way". She really loved the activity and spent up to an hour a day crafting masterpiece concerts with it.

She envisioned what could have been if her parents had been looking at her activities through the lens of autism. Her mom watching her do this, and being sad that her poor disabled child can't even understand how to play a simple matching game. Her mom trying to teach her how to play with it, while she got increasingly frustrated and angry by her mom stopping her concert, until both of them left sad and angry, and her enjoyment of the toy probably being lost forever in the rush to "fix" her so that she can know how to play "properly".

I think back to when I was a small child, there was no massive concern over my early social development, because like most other kids in our rural area, I was not expected to interact with other small children very often, and definitely not large groups of them. Like many highly verbal ASD kids, I was a charmer of older relatives with my large vocabulary and adult manner of speaking. It never entered their minds that I shouldn't talk like that. It was just an indicator that I was smart. I very, very rarely had to face overwhelming sensory input, because we stayed home where everything was familiar and safe. Spinning objects and myself, and staring into kaleidoscopes for hours were just welcome reprieves from my non-stop talking. My parents didn't have pressure to put me in bunches of activities, and I had time and space to slowly learn many skills that our kids take extreme hits on on testing. I learned that I could do things for myself. I made some big mistakes (note apple cider and apple cider vinegar are NOT the same thing, but I'll never make that mistake again while cooking!) Mostly, I think I just had this great amount of downtime and peace and freedom from every little thing being analyzed for symptomology that our kids don't get today.

Once you get to looking at the way a kid behaves through that lens, of "Is this a symptom?" then things that seemed innocent before aren't any longer and it is sometimes hard to not have a worse attitude about them. Like the idea that blogger had that her mom wouldn't have seen it as a cute, creative game, but a symptom of focusing on parts instead of the proper functions of toys.