Friday, November 12, 2010

Don't Ask Don't Tell: Are There People That Don't Know About Your Child's Autism?

I was recently asked by a blogger friend what I thought about the fact that she hadn't told some people about her child's autism.  She called me her "virtual autism mentor" so my first reaction was to be very afraid for her.  My next reaction was to judge her swiftly and harshly.  Not.

Audrey is not so high-functioning that she could pass for typical.  Maybe she could when she was younger and it wasn't unusual that she wasn't conversant and was obsessed with the Wiggles and Baby Einstein.  But now at 6 1/2, you pretty much know something is up if you spend more than 5 minutes with her.  Still there are some people that don't know or that I haven't explicitly told.

I think in each circumstance, the important thing is the "why?" of it.  If there are people in your life that you have not told about your child's autism, why haven't you?  Because you're private?  Because you're not in close contact and you haven't told them about your child's autism in the same way that you haven't told them a great many other things about your life and your family?  Reasonable enough.  But I always want to do a gut check to make sure there aren't any more nefarious reasons.


Relatives that you don't see often
There is a faction on my mother's side of the family that she has elected not to tell.  I see these people only rarely at events such as wakes and funerals that I wouldn't bring Audrey to anyway.

In this case, I believe that there is some old-school shame on my mother's part.  But that's for her to deal with.  I don't see these people so it's not like I'm the one that's hiding it.  If that's the way that she wants to handle it, that's her prerogative.  In her defense, these people are total pinheads and wouldn't know what the fuck she was talking about if she did tell them.


Neighbors
This is always a weird one for me.  When you first move into a neighborhood, do you really have to tell these complete strangers about your child's special needs?  I have one friend who espouses the "it takes a village" mentality, and wants everyone to know in case her kid gets out of the house and they need to intervene for any reason.  But I'm not sure that if a neighbor saw my kid naked and hugging a telephone pole that they would handle it any differently whether they knew or not.  It's not like I'm going to call them all over to give them autism awareness training.

Audrey was 3 when we moved into this house, and still at the could-possibly-pass-for-typical stage.  Now that she's 6 1/2, her disability is more obvious.  There is one next-door neighbor that I don't like very much, so she was someone that I very pointedly never told.  But over the years, others have figured it out and I was pretty sure that she knew as well.  I don't hang around outside my house very much, unlike her who is pretty much constantly ass-up in her flowerbed.  One day she caught me as I was putting the trash out and started making small talk.  And then this, "So Audrey looks like she's doing so well!  She's talking so much and riding her bike..."  I always find it bizarre when people casually acknowledge something to you that you've never acknowledged to them.  It felt like she was doing that leading-on move and trying to get me to confess something.  Like "Boy, the grass is sure growing in nicely over that coffin-sized hole you dug in the backyard...." or "Do you guys find that the grow lights for the weed garden in your basement raises your electricity bill?"  I reacted the way I always react to anything she says to me:  I grunted and continued on my way.

Facebook "friends"
If you've got 750 of them (I'm looking at you Dani G), you can't possibly be close personal friends with all of them.  There are lots of long-lost grade school, high school, and college friends out there, and if you are FB friends with someone whom you used to feel competitive with back in the day there is a temptation to make them think that your life has turned out just perfectly.  For some, Facebook is the 365-day-a-year Christmas form letter, with photos of their perfect family and the sharing of only the good stuff.  Or "bad" stuff that is really good like "Can you believe that Jack broke his leg in seven places while skiing the black diamond trails during our family vacation in Vail to rescue us from our burning chalet while catching the winning touchdown in his pickup game against the Kennedys?"

This one doesn't apply to me because I don't have a lot of Facebook friends and I was copping to Audrey's autism and linking to this blog long before any long lost acquaintances friended me there.  But I do know people that consciously avoid any reference to their child's autism on Facebook.  I had one friend like this and I never said anything to her about it.  Then one day I saw her link to her donation page for an autism walk, and it felt like she had just burst out the closet swinging her feather boa and singing show tunes.  OK, I'm mixing my metaphors now.

What about you?  Is there anyone in your life that doesn't know about your child's autism?

43 comments:

  1. Like Audrey, anyone who meets Griffin knows right away that he is, how shall we say it, quite a bit different. Kinda like Mrs. Big Daddy after a glass of wine, I blab to anyone who will listen about his autism. It's not like he is gonna slip under anyone's radar.

    The neighbors need to know. If not, they might think, from the sounds coming from Griff's room, that we are running a meat packing plant / fettish-torture chamber. (They'd be half right)

    Btw, love the pic of Gladys from Bewitched.

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  2. I am still in the pretty much passing for normal stage and I thought this post was brilliant. I love the facebook part. I freaking hate the super positives on fb "just got back from 15km run and 1 hr kickboxing. now off to dinner with best husband in the world". whatever. I never know what to say when juju is totally freaking out in public laying on the floor anymore. do you have a stock phrase you use for strangers who stare?

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  3. This was *exactly* what I was wondering about!

    I'm glad to know I'm not ducking out of an obligation to host autism awareness to every busybody on the street!

    And I was wondering if I was being overly spiteful for refusing to give out the official diagnosis to family members who would love all the gossip/drama associated with 'having a great-niece with autism' at their next bridge club meeting.

    And then randomly I'll tell strangers... ie pulling the autism card so that I can get Sears Repair Services to commit to a 3-hour window rather than the 8 hours they originally gave me. Does this make me a hypocrite?

    I love your blog!

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  4. @Hattie: check out my post from Sept 13 for some tongue-in-cheek suggestions.

    http://www.autismarmymom.com/2010/09/beware-child-with-autism-at-large.html

    I'm all talk though...I usually just ignore the stares and carry on trying to tend to my kid. I might have some of these cards made up yet though!

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  5. This post is awesome, definitely made me laugh.
    I have a love-hate relationship with Facebook, mostly because I really hate reading all the crap that you mentioned above, but I love looking up my high school nemesis and seeing how fat she got (without friending her, of course).

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  6. I often struggle with who to tell and who not to tell. When there is a rude woman at the bus stop asking me why my first grader can't tie shoes (this happened yesterday) I wanted to say, "Shut the fuck up, he has autism." But instead I said, "Hmmm... Guess we need to work on that."

    After Zach fled my home while I was in the backyard playing with my younger son I did make it a point to tell a few neighbors who I had not told previously... If safety is involved it is a no-brainer.

    A few years ago when Zach was old enough to be a talker (but wasn't) an old bag working at Bed Bath and Beyond kept messing with him in the shopping cart, asking him every question under the sun. After the 50th question and the 50th blank stare she turned to me and said, "Not much of a talker, huh?" I said "HE HAS AUTISM" and cried all the way to my car. I think I could have handled it better but I'm not the type of mom to hand out "my kid has autism" business cards. I see these sold at the Autism Walks... Really? I guess if that is how you roll...

    Do you watch Parenthood? Last week the dad knocked a guy on his a$$ after he called his son with Aspergers a "retard." I think this is supposed to make us think he overreacted but instead I think I would have done the same thing... Not sure that this situation is relevant to your post but I felt obliged to comment on it nonetheless.

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  7. @Laura (cooperl788): See! you are proving my point! Isn't that what is called schadenfreude...the getting off on others' misery? I certainly don't want to hide Audrey's autism, but I hate that I might be fodder for someone's schadenfreude...someone who for some reason wishes ill on me for the time that I mocked them in the cafeteria 30 years ago!

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  8. @cara: thanks for the inspiration! I agree with you on the gossip fodder. And we deserve pulling the autism card once in a while!

    @erin: I was thinking of Zach with my pole-hugging scenario. I am inconsistent as hell when it comes to total strangers in stores, etc. Who knows which of my multiple personalities will be on display from one minute to the next.

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  9. ok, my.
    computer ate my last commment. here I'll try again. we have a fb "friend" who always comments, "just spent 5 hrs. at the gym" I always have to stop myself from commenting back "no you didn't" keep mixing your metaphors and have a great weekend.

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  10. I definitely keep it on a "need to know basis." I frankly don't know if my in-laws know about my son's autism. I also don't put it on blast on Facebook. I feel like if there is a chance that one day he will be fully recovered, I would like to not have shouted it from the rooftops or via car magnets, etc. and cause him any more problems down the road.

    Kimberly

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  11. This is a tough area for me. I used to keep it off my facebook page, but I don't anymore. Overall, I'm pretty open about it. On most days, my daughter can pass for typical. This makes it a little harder to discuss with some people.

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  12. I am NOT shy about Brian's autism....I use to be though. Back near the beginning of his diagnosis and when he could still kind of fit in with toddlers I didn't mention it. Now I find I mention it a lot to even strangers, because I want them to know there is a reason he's the only kid in the concert flapping and running in circles or why he's six and a half and he didn't answer you when you asked him what his name was.

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  13. I don't hide it either, mainly because he's subtle (an as an aside, a private OT told me he's not autistic, which I wasn't aware she was also a developmental pediatritican. grrr), and I have to tell people that he has a hard time understanding. I'm always afraid for his safety. And honestly, what people choose to do with the information is their problem, not mine. I'm not here to dance around eggshells with high school classmates on facebook.

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  14. I feel odd commenting, because my kids don't have autism, but my niece does and I taught kids w/ autism. My mother in law, the grandma of my niece, always totally ignores her autism -- not accept it. Like, look at the ceiling and hum ignore it. Pisses me off. Also, I have to confess that I am *so* guilty of the chat up. But here's why. When I see you, the parent of a child with special needs, I want to reach out to you. I saw my sister in law feel left out b/c of autism so I think I overcompensate. And, I really don't 'care' that your child has autism in the sense that our kids can totally hang and we can be friends. Does this make sense? I probably said this all wrong.

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  15. Tough one. Everyone close to us knows. But Jaylen is the opposite. Before he could not pass for normal, but now might fool people for about 15 minutes. So any quick visits and someone might now know. But he is still so young, it may become more obvious later. I link my blog to FB so everyone there knows. I told my neighbor because my son plays over there and trust me, I had to tell for various reasons. Our other neighbors might know since the short bus with the letters ECS drops him off. But I am sure many people don't realize that it stands for Exceptional Children Services.

    I'll tell you one thing, I wish that people knew right away sometimes, so instead of judging me and him, and thinking he is a brat they would know he has a disability and they are being ***holes.

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  16. I go back and forth on this one. When Ashlyn was young I told everyone. Then she got older and I didn't purposely not tell people but didn't feel I owed anyone an explanation either.

    Now, as a teenager, she is very verbal and quirky and sometimes can get a little out of hand in public places. For the most part I have found it is easier to make sure everyone already knows if we are going to any type of gathering. People are not as forgiving of teenagers throwing tantrums so telling everyone first decreases the stares and eyerolls and also helps other kids her age to be much more supportive of her instead of judgemental.

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  17. What people don't know won't hurt them. I wouldn't swing from the rafters announcing anything thing like "WHOOOO HOOOO MY LITTLE GIRL IS AUTISTIC!" People who need to know will know. If I were to meet up with some other mom and it seems her little girl is playing nicely with mine, I would most definitely mention it. As for neighbors, only if I felt comfortable. It's nobody's business. And it's not like your hiding it. You'll know when it's right.

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  18. I know that a lot my husbands friends and co-workers don't know. But I pretty much tell everyone. Both kids have Autism, I work for an Autism service provider, i pretty much eat and breath it. I'm probably no longer capable of having any friends who don't know and are willing to talk about it for hours on end. Yep I'm officially a dull boring blah!

    Maybe I'll.......I'll take a lover, and not tell HIM about the kids autism! Or HER?!!!
    (who am I kidding, I would tell them both. )

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  19. I couldn't read the text next to the picture of Cleetis, for some reason. The two are overlapping. Not sure how you'd fix it, sorry.

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  20. I tell everyone about my son's autism, mostly from a safety point of view as he's a bolter. Plus I'm an autism bore. I can bore them into submission XXX

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  21. @Kim: We are not opposed to being chatted up! It's just the judgment and the ignorant comments that hurt.

    @Jessica: I totally get that. It definitely can be tied to the age of your child and where they are on the spectrum. And I think it can ebb and flow over time.

    @Aimee: I'm thinking that maybe the flapping gums about your SN kids may preclude you from the torrid love affair.

    @lebelinoz: I'm having major computer issues and have been working in every browser known to man. I *think* it may be fixed now. Either way I love that you knew who Cletus the Slack-Jawed Yokel was.

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  22. Honestly, I never thought about it. Xander's different way of being is pretty obvious after spending some time with him. I don't think of his autism as a stigma and it's part of what makes Xander who he is. All my friends and family know and most of my neighbors. I tell strangers as the need arises. It's really a non-issue for us.

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  23. This was a very good post, and very good question.
    For me, it took me a bit to express Isaiah's new diagnosis which we received in the spring. My co-workers know about his speech, development delay, and special needs schooling, and therapy because there is one day a week that I cannot work, besides, for the most part, only the close work friends are the ones that I really, and truly speak to about him. My neighbors, that one feels funny. No, I don't announce any bit of his disability to neighbors...now if they were also friends that would be different. When you talk to Isaiah, you know something is up, but it is not obvious right away beyond his speech impairment. Family, our close family knows all there is to know about Isaiah...they have to because they are so important to our family. Relatives that we see every now and then...including my husband's immediate family...I have not told them directly, nor has my husband. I don't know, if we don't really talk then I don't find it necessary to tell them because he is not a casual piece of conversation,but nor would I avoid the conversation...kwim? Another factor for me is that Isaiah is considered high-functioning in his classroom environment. His diagnosis is PDD-NOS and not autistic. Should that make a difference to me? It does because I think people will not really get what PDD-NOS is but do have a better understanding of autism itself. and possibly make a incorrect judgement call...does that make sense? Anyway, good question. By the way, do you blurt out the diagnosis to health care professionals that have fleeting moments with your child? I was wondering about that when Isaiah had to go into surgery...yes, the surgeon and team knew but what about the recovery room, and holding room nurses,and with ER visits for stitches and whatnot. Yes, I do tell them certain needs of Isaiah's but not the diagnosis.

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  24. @Lynn: Oh thank God! Even just typing the phrase "take a lover" was exausting.

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  25. @Happy13: I'm guessing that those who choose not to tell some people under some circumstances would cringe at the word "stigma". I should do another post further exploring why people don't tell. Some examples I'm hearing are not wanting their child to be labeled and not wanting to deal with potentially ignorant responses.

    @ibeeeg: I always have told any and all health care professionals...and we've already had more than our share of ER visits. I feel that they really have to know and hope that they of all people should have some knowledge of it and would want to know. I can see where the PDD-NOS thing is harder to explain.

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  26. I don't hide that fact that my kids are autistic, but I don't go around advertising it either. I don't want to be known as "the guy with the autistic kids", but I know I couldn't hide it any longer than I could hide my nationality, marital status or the fact that my mother is still alive and my father is not.

    People in my city are so obsessed with schools, it's just a matter of time before I let slip that my kids go to "a special school for autistic kids".

    P.S. You fixed the picture-text crossover problem. Great job.

    P.P.S. You're impressed that I recognised Cletis? Sweetie, I could probably name all the kids in that picture!

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  27. I was drinking hot tea when I was reading this. It came shooting out my nose when I saw my shout-out. For the record, I DO know ALL 750+ of my FB friends. I'm just that popular, yo! Hilarious!

    MY KID HAS AUTISM!!! I shout that shizz from the rooftops. I am so out there and open about it. I agree with the "it takes a village" mentality.
    Plus, I'm not ashamed. Yes, some days I'm sad, scared and even disappointed, but not ashamed. My bird is the sweetest, prettiest, funniest kid I know. Nothing to be ashamed of here.

    I do know people who don't tell people or even refer to their 5 year old nonverbal kids with ASD as "late talkers". I can't judge what anyone else is gonna do (who am I kidding- yes, I can!), but I think I get more understanding and compassion with honesty. Did I basically just write a blog post here? You might have inspired me....

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  28. I don't hide it, although, bc Katie is HF, I get a lot of people who still tend to think how I parent is the cause of her issues. I also find myself not telling people maybe as much as I do bc I almost feel guilty Katie is HF, and by saying she has Autism I am somehow going to offend those with LF kiddos. I have issues...ha. I put it on FB, though, and I have a blog, but I'm not really super verbal about it. Well, except with friends who get it.

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  29. I meant not as much as I *should*.

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  30. This is very much like the dilemma of to tell or not to tell about your child's adoption. On the one hand, not a shameful secret. And not really secret at all when your kids are clearly a different race from their parents, as mine are. On the other hand, does everyone on the street need to know that about your child's birth mother's drug problem?

    In the adoption world we're counselled to keep in mind that once you've told someone you can never untell. You have to ask yourself the reasons for telling. Is it beneficial to the child to tell, or not? In the case of adoption, we mostly tell when the person is relatively close to the child and we're mostly confirming something they already know. I keep to the same guidelines with autism. If they're relatively close and they know her well enough to have clued in that something is a little odd about my Queenie - okay, I'll let them in on it. Otherwise, keep 'em guessing.

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  31. I tend to lack boundaries online (you may have noticed) so I talk about everything all the time.

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  32. Um. Nobody knows about Owen's autism.

    Oh yeah. He's Deaf not autistic.

    I got nothin.

    :)

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  33. I wish I could point a parent or two to this post... but then I would be outing myself as a blog denizen, and can't. do. that.

    There's some new research about college students who disclose/don't disclose their 'hidden' disabilities - including spectrum disorders - pretty interesting stuff.

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  34. I'm totally out...I just have a big mouth I guess. Most people can't guess exactly but it explains some of the odd behavior so I just blurt it out...

    The facebook comment was priceless and the feather boa was over the top! Love it!

    only a movie...that's pretty interesting about the college research students...I'll have to check that out ;-)

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  35. All our close friends and family know Kai has Autism. But complete strangers do not know till they get to know him. Kai looks normal.. till you talk to him. His lack of vocabulary is a huge sign and his OCD about cars and trucks is another big giveaway for most people. But there are ones out there that seem not to care to know what is wrong with him.. and ones like that I just do not tell. But if they ask.. I am not shy. I am glad to share the awareness and share Kai for being Kai! :)

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  36. I am also completely out about my son's diagnosis, but am trying to avoid the over-share. I don't want to be the mom who tells people so that it "explains" behavior, like why he didn't say hello to the person at the grocery store.

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  37. Work. At first no one knew. Then there were the select people who knew. Now, I'm able to say it more freely. Am I embarresed of Ben? No. It's just that sometimes it can be emotional still. When you tell someone, there's always that look of registering what you're saying and pity. I'm sure it's natural. no harm no foul, but it can still hurt and put a tear in my eye. I don't want to look weak, so sometimes it's easier to say nothing

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  38. Nefarious....now THERE'S a word I haven't heard in a while! :)

    We're tellin' people along the way that Kai's "on the spectrum". The jury is still out on what to expect down the road...he has a lot of other issues besides PDD-NOS. I find that letting folks know of his special needs helps them understand that there is a reason why he acts a little differently. It just seems easier this way. (Now if I could have a diagnosis for behaving differently, wouldn't THAT be nice?! LOL!)

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  39. @Jacquie: I almost included a fourth point for work, but since I'm not working right now I decided to leave it out. I totally get your reasoning. For me, there is also a fear that they will discriminate against you if they feel that you are more likely to be distracted or put in less hours because of having a SN kid. I worry about prospective employers Googling me and finding this blog...if it's between me and another person would it impact their decision?

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  40. well...dh is such a VOCAL husband and its always him that announces it to the world. Its like, "Hi this is my son and he has autism!!!" he annouces it strangers or anyone that galances in our direction so I don't have to. He facebooks and he tells ppl on there too. I don't facebook because of all the reasons you said. i read over his "friends" and I see the trash they write and I could never be friends with ppl irl that write perfect perfect perfect crap about skiing in vale etc and its sooooooo annoying so i refuse to facebook.

    the neighbors know mostly that we talk too. the ones we don't talk to...who cares...and they wouldn't care anyway.

    Relatives know. Some care and some don't care and still think he is acting up to be bad and even explaining it to them they still don't get it.


    But, i think people should know. I think its easier on everyone if things are out in the open and I am not the type of person to hide things like that.

    With my son, as baby up unitl 3 you couldn't really tell--- at one point a few years ago you could tell between ages 3 and 6--

    now...I think mostly you can't tell too much because he has gotten help with his aide.

    But, he does act up like in tantrums and standing too close too people and general social awkwardness and I can see where people think ohhh he is just a bad little boy etc....so I prefer that they know so they know he isn't bad he just doesn't get social cues.

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  41. We do it on a need to know basis..if someone asks..we'll tell. I think the most important person to tell is your kid-when they are ready. My boys know they are on the spectrum-they knew they were different..I figured I ought to say something..they were kind of relieved to know...

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  42. I've gone through phases with this and it's only been a little over a year. When my daughter was first diagnosed, she was diagnosed with global developmental delays... 6 months later we got a spectrum diagnosis. (not by choice). In those first couple of months, I mostly fell off the radar. I didn't tell people. It wasn't so much a secret, as I was exhausted and didn't get on the phone and when I did if people hadn't been there from the beginning, I didn't have the energy to go through the entire story again from the beginning. There is/was a certain contingent of family who (not close) who believed they had the right to spread the news. I didn't feel like my daughter's life was news to be spread....

    Now, a year later, I'm more open about it. But selectively so. I talk (a lot) to people who are also going through it. Not so much to neighbors, but that's more a timing and closeness thing. Family is an interesting beast, which I'm also selective about. I don't NOT mention it. I just find that at times for my own sanity I have to be selective in who I talk to. My daughter too is at the stage where situations are difficult to navigate. We get looks and comments... and sometimes indulgence because she's not yet 3.

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  43. @Melissa: Your daughter is still so young...you have time to work it through. If you're anything like me, your thoughts on this will change over time (sometimes daily, in my case). Thanks so much for stopping by and commenting!

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