On the Facebook posting of that interview, I got a question from one of my Facebook friends who also works with autistic children and who has a child of her own with specific needs. She noted, "I'm not sure how to talk with parents who want the fact that their child has autism kept a secret from the child," observing that she thinks there is value in speaking honestly about their experiences, good and bad. Then, she asks, "Any input on how to talk with parents about the decision to talk about autism with their child?"
I think this is a fantastic question and one that every parent of a child with differences faces. As our interview indicates, we're quite open about autism around our house. But of course, at one point, TH wasn't as self aware and didn't really know what autism was. And I remember clearly when we initiated the discussion about autism because I blogged it, two years ago this month, as part of Autism Awareness Month. Except I was working on his awareness of his own autism.
We started slowly. He was five and still not particularly linear in his communication or handy with receptive language (both linger today, the latter more so). And then, we just dove right in, using as our starting point Autism: The Musical, which TH had watched, rapt. I've found that having a movie like this to watch (as we did with the Temple Grandin biopic) can make segues into discussion and revelation about autism more natural than, say, my just popping off about it while we're going to get gas. It doesn't make it seem portentous or as much of a non-sequitur if there's some external reason to bring the subject up. I wanted him to be aware, but I didn't want him to feel excessively self conscious about it.
Our process went on from there. It got to the point that TH was so comfortable with his autism that he was able to announce in class one day that he has it.
So, obviously, we long ago made the decision to be open with TH about his autism, not to hide his bright, cheerful light under a bushel. I can't even imagine being able to do that, anyway. How do you hide autism when it is, at its core, about differences in communication and self-regulatory behavior? Differences that show up pretty clearly out there in the big world. We could either have tried to keep it a secret from our son and left him to the torment of wondering why in God's name did people think he was so weird, what's wrong with him...or, we could have opened his mind to his differences, the good and the bad, and let this awareness make him comfortable and understanding of who he is. We chose the latter.
And that takes me back to the original question that this teacher and parent asked, ""Any input on how to talk with parents about the decision to talk about autism with their child?" All I can say in response is, the more a child knows about and understands themselves, the better they will be able to navigate this world. And that applies regardless of whether they are autistic. As for how to go about it? That depends on the child. With TH, our mantra was, "Everyone's brains develop in different ways. Yours developed in a way that results in something people call autism. And here's what that can mean..."
I think that for autistic children, awareness of their autism to whatever extent is feasible is just as important as others' awareness of it. Speaking of which...to round this up, I take you back to two of my original 2008 posts bookending Autism Awareness Month. Near as I can tell, they still apply. I infer from this that not much has changed in two years in the great big world out there. But, as TH's honest and unselfconscious answers to our interview questions illustrate, his own awareness has come a long way, baby.
12 comments:
I'm waiting until my son has more language and maturity to talk to him about his autism. Right now I don't think it would mean much to him. But when he's frustrated about having to do therapy instead of "just play" I tell him that he needs to work so he'll learn how to talk like a big boy (or I name one of his neurotypical classmates as an example), and I say that when he learns how to talk he'll have more fun.
I made a decision several months ago to start talking about autism and what it means with my 4,6, and 8 year old kids. I want it to be a word they grow up with, so no one is gobsmacked by it when they're older. I don't know how much they really understand yet, but I want the conversation to be open.
I have refused to discuss it with mine and have refused to let the school do the same at this time. A year or so ago I was discussing his younger bro with my Mother and he said "I don't have autism", and I agreed with him. His "autism" will not handicap his ability to live independantly, go to Univ or College, get a job etc.. therefore, it's not an excuse for behaviour and refusing to learn.
In our house autism may be the reason, but it's never the excuse. They have been raised "normally", they have the same expectations of behaviour, and learning as "normal" children. Doesn't mean little boy will get to Univ, but he still must "learn". We're not discussing little boys flapping and vocal noises, but meltdowns, temper tantrums, picking up after one's self, hygiene etc. Little boy (8) bathes himself with the help of a PEC strip in the tub. All I do now is rinse his hair.
Eldest made a comment a month or so ago that it was his "autism" that caused him to do something... I didn't know they were starting to discuss it with him at school since they aren't allowed to... And I looked at him and said "Excuse me??" "Well the autism was to blame"... Me "No, you CHOSE to behave in that manner, you know what the rules are and you will follow them". We've never had a repeat of that excuse.
Eldest knows something is very much wrong with his younger bro. We have had discussions - he's started them - about what will happen if little bro doesn't learn to speak. He feels it is his job to look after him, I have told him "no" it is mine and his Father's - not feeding his anxiety issues - and that it will be "ok". As he gets older, there will be more discussions, especially since little boy - hopefully - will be changing schools in the fall.
But for him, he's doing well at school, his social skills are close to their's, the children realize that things are "different" for him - OT, English writing expectations - but when he does better than them in Math, remembers obscure facts in Science... They respect that too... B/c, it just is.
When he's 12 and must be brought into the IEP process, he should be mature enough to discuss it. By then I actually hope we won't need one anymore.
This brings up something I always think about when reading blogs by parents, or by people who have parents: Do your kids/parents read your blog?
I mind thelawdogfiles.blogspot.com by a Sheriff's deppity in West Texas. He's not allowed to cuss on his blog because his Mom reads it.
Yes. TH reads this when he feels like it and is aware of what I post here, especially if it's something like the Q&A below. My mother, on the other hand, does not read it, but that's not because of the language.
I guess it never occured to me not to discuss it with my son. He's still too young and still working on developing his communication skills so right now he's not concerned with it. But we will talk about it when he's older. I feel the autism is part of him just like his gorgeous hazel eyes or affectionate nature. My daughter has a heart condition and had open heart surgery at 6 days old. She and I talk about that because it's part of her too.
Kids are smart, whether or not they're on the spectrum. ASD kids know they can have some differences from non-ASD children so I think it's good to be open about the autism.
Like Stimey and MollyandMore, we just incorporated autism into our lexicon and discussions from the start, just as we had incorporated discussions of adoption.
If we can't make autism seem natural and something not to be hid, then how do we expect them to feel the same way?
Joe
I think it's important to not only be open with one's child about their autism, but also in a positive way. My parents were open with me, but they didn't really manage much beyond the disease model, so it kind of exacerbated the neurobigotry I had internalized against myself. This is why I'm glad to hear stories like your child's, where the child feels comfortable and positive enough about their autism to disclose it so openly in front of a whole room of people and at such a young age as well.
Reading blogs etc, I have found no reason to pedal autism to my eldest or any other HF child. Reading these comments... ditto but I thought I'd expand my comment....
We have never ignored his autism. At 2 we started speech therapy, at 2.5 we got a dx of mild PDD... at 3 we got the dx - he'd started to speak - that gave us problems in school. When in K we were told "speech and language delayed with global delays" was just a LD and they could ignore it to Gr 3... I spent 18mths banging my head against the system to get dx of "A mild form of ASD" or verbally NLD w/ S/L delay. This got us PDD and SLP services back in. We spent summers at a speech camp for a week, we spent weekends at speech camp for a Sat morning... these camps were a 2hr round trip from home.
We spent most of Gr 3 nagging to get OT put back in and finally I called CCAC and they called the school looking for the paperwork... but it's in now. B/c it is in he has a fusion keyboard for English class. He has difficulty getting his thoughts to his pencil in a timely manner. He was psychometrically tested at the beginning of Gr 4 where we discovered the poor short term recall issue... Yet he has amazing long term memory skills. When the school said "we don't do speech and language testing" I called the SLP and guess what.... 20 tests later we know exactly where the problem lies. English class. And it's dealt with - accommodated under the IEP yet, Teacher's keep pushing him and his C's in English are all his and we're very proud of them. At the end of Gr 3 we had crappy IEP meetings b/c they refused to realize that just b/c he talked didn't mean they didn't have to teach social or behavioural skills. I informed them it better start in Gr 4 and they better implement Ont PPM 140 (token system - ABA) or Behavioural Services (I could call them myself) would be in to audit the class... They finally put in the program - and 1/4 time EA support - and his social/behaviour etc in school has improved unbelievably. But now he's been taught how to work in groups, how to deal with playground issues etc.
We've gone through the head banging, perma bruise on the forehead. The level 10 destructive meltdowns. Now we have the 10 yr old mouthies and moods.. normal stuff. We're going to start allowance this summer. Including losing money for not picking up your stuff unasked.
But we've just kept pushing him forwards. We're teaching independance, not learned helplessness by saying "Yes, Johnny, you do a, b or c b/c you have autism". No in our house it's "do your best, you control your actions, you do a, b, c b/c it's the right thing to do".
As I've always said... for us Autism may be the reason, but we don't use it as an excuse. We look for ways to go over, under, around, and through it.
It's not perfect.... but since I was told to pretty much write him off 8yrs ago and he's as "normal" as the rest of those boys in his class.... I think we've done a damn good job parenting him.
Well, I have clicked every link and absorbed every word. WOW!!! I for one am more aware.
It's been a gradual discussion in our house (my kids are almost 15 now, diagnosed at 20 months). Autism's never been a secret or a 'bad word' in our house (I was on the phone too much of the time for anyone to miss hearing it), but the understanding of and questions about it have changed over the years. My son is non-verbal, but I think that talking about it openly has helped him.
It's been very helpful in the past year for my daughters to become familiar with some adults on the spectrum (especially women- thanks AWN, Amanda, and Beth!), and to see how different people on the spectrum are living their lives. That has opened up a lot of positive discussion about autism, what it means to them as individuals as well as our family, and how they can make good, practical decisions about their adult lives.
It's an ongoing discussion, and although the specific topics may change, it's all about how we can all make good decisions for our lives. I'm so incredibly grateful for the number of great role models out there at the moment who help in so many ways.
And yes, each child at one point or another has tried to use 'autism' as an excuse for something- sorry, you might be autistic, but you can still do chores. They're
teenagers :-)
To answer justthisguy's question about blogging...my girls have asked me not to blog about them, but I am allowed to comment on other's blogs. That's fair.
Thank you for this. We talk about autism around our children but I've never sat down to explain it to Patrick. (Big brother is two years older and not autistic and he does know about his brother being autistic and how that describes some of his differences.)
we have had many conversations about different brains, etc. I've been wondering how to work the word Autism into a specific conversation and, well, you said it.
"...Yours developed in a way that results in something people call autism. And here's what that can mean..."
He knows he's different. He knows that's ok. And he knows it's not an excuse for bad behaviour. But somehow we've never gotten around to giving it a name. I guess I always thought he'd equate the word with himself at some point since we do openly talk about it around him. Guess I was wrong (since he's never used the word, ever) and I appreciate the help with this next step.
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