do you tell strangers about your child's DX when they behave inappropriately?

[Piglet68]

Another embarrassing moment at the grocery store with DS (7) who was recently diagnosed as autistic (high functioning). While in the checkout line he was trying to open a bag of candies and some fell on the floor. In frustration he threw the bag, yelling "They dropped on the floor!", which spilled candies that hit a couple of people. I picked them up and scurried out of there, as someone said in a disgusted voice "He *threw* them at me!". 

I get so embarrassed in situations like this. I know everybody is thinking that he's a horribly spoilt, badly behaved child. I've been so tempted lately to say "He's autistic" as if to explain that I'm not a horrible mother and he's not a horrible child. I suppose I hope this will stop people from judging me and him, but it may not make any difference. Plus part of me feels its not right to hurl that label around just to spare my own issues with feeling judged and embarrassed. 

I'd love to hear from other parents of autistic kids, or kids with behavioural issues, to know what to do in these situations. 

[SpottedFoxx]

{{{hugs}}}}  You know what... ALL kids have melt downs and do stuff to embarrass their parents.  The adults are the ones who should be embarrassed, not you.  Had I been in your situation, I would have just calmly said "I'm sorry, my son is autistic and frustrates easily" and just kept going.  If they made a rude remark, I would have either given them a hairy eyeball or told them it must be nice to be perfect.  The key (and the hard part) is to not get flustered.  By being calm, you show these so called adults, that you are in charge and you are just find in dealing with your child's struggles.

Once my son was having a total sensory meltdown in the grocery store.  I had to get what I needed so I just let him cry as I calmly shopped.  Oh, the looks I was getting!  Then, down the back stretch of the store at the very end was a woman waiving her arms.  I looked behind me and no one was acknowledging her.  As we got within earshot, she said to my son (who was in one of those car carts) "Oh, you are a crazy driver, you better not crash into me!" and with that, she bumped her cart into mine and made the silliest of faces.  My son went from complete hysterics to hysterical laughter.  I will forever be indebted to that woman for getting it.  For knowing that some times it's just a bad day for a child and you can either be part of the problem or part of the solution.  

I hope the next time (and lord knows there will be a next time for all of us) that you encounter adults who get it.

[Linda on the move]

There are a bunch of really fun autism t-shirts. My favorites says "Eye Contact is Overrated" and has a smile face staring off in the wrong direction. My second favorite says:  "Aspies Unite -- oh right, like we are going to hold hands."  Here's a link to other autism Ts: http://www.cafepress.com/+weird_autistic_kids_hoodie,114782712

(I don't own any of these or put them on my kid, but looking at them makes me happy)

I don't know that there's a *right* or *wrong* way to handle the weenie butts of the world. I've gotten really thick skin over the years. It doesn't bother me any more when people glance at my kid for a second and think they can evaluate me as a parent based on what they see. It's so absurd. I have developed tremendous compassion for other moms and learned to drop my judgements of others.

[Emmeline II]

I also found that being calm, not making eye contact with "spectators," and just dealing with my child worked best - I think it implied that there was an "issue" and he wasn't a typical child. I did have a few good Samaritans who would push my cart, open a door, etc., so I could get ds out of there.

I did see a post where the parents carried cards that had something on it explaining Autism, and gave them out when a "spectator" was less than understanding.

Edited by Emmeline II - 11/8/11 at 4:34pm

[DBZ]

I understand how you feel. There are times when I am tempted to say something like that, but the people that really matter already know my DDs issues. There have been times when I have told a grown up not to be so judgmental because things aren't always how they seem. A friend of mine finds comfort with her autism bumper sticker. She hopes that someone will see it and put 2 and 2 together. 

[Piglet68]

Thanks everyone. It is always a good feeling to be around people who get it. We're lucky to have so many supportive parents in our homeschool community, but venturing out into the general public can be hard sometimes. I just wasn't sure if copping the "he's autistic" thing would be fair to him or "right", iykwim. 

SpottedFoxx, thanks for the suggestion. "I'm sorry, my son is autistic and he frustrates easily". I like it and am going to remember it. I did feel I owed the cashier who got hit with a candy some kind of acknowledgement or apology but I was too flustered at the time. Next time I will try this. Then if someone says something ignorant I can use the "Must be nice to be perfect" line, if I have the courage, lol. 

[EarthRootsStarSoul]

This makes me really want to start a public awareness campaign about autism, so that autistics and their families are more likely to be recognized and accepted by the general public. 

[McGucks]

A family member has a child with Tuberous Sclerosis and associated Autism.  She carried little "awareness cards" that, from time to time, she would distribute in similar situations (not sure how a person could manage to care for a very upset child in public and pass out cards, but she was pretty remarkable).

One thing to remember is that, while some people might be watching and saying ignorant things, most would be checking the situation to see a) whether the child was alright (at first glance, they might think the child was being mistreated...and, after that b) is there anything I can do to help?

As long as your demeanor is that of trying to calm and console your child, folks will likely realize you are doing the best you can and that your child is being cared for by a compassionate parent.

[Roar]

Here's one way to think about it. These are strangers that you will likely never see again. So, your child is really your primary responsibility and your primary audience. Starting from that idea consider these questions: Do you think it would be helpful to him to hear his behavior explained or excused due to autism? Would you want him someday to say to say to strangers that he has autism?  The answer to those questions is going to depend a lot on your child and on how his autism affects him, but my main suggestion would be to evaluate your comments in terms of how they affect your son. On some level, I think people who are going to give you dirty looks or say rude stuff are going to do it anyway because a lot of people don't understand special needs kids.

[Linda on the move]

Originally Posted by Roar 

 Would you want him someday to say to say to strangers that he has autism? 

  Trying to imagine my ASD dd saying anything at all to a stranger.

[Roar]

Originally Posted by Linda on the move 

  Trying to imagine my ASD dd saying anything at all to a stranger.

I understand you are kidding, but I think there is a serious consideration. While being able to communicate that they have autism is not going to be a realistic goal for some kids with ASD, it is for others and it may be a lifeskill that prevents serious danger in an emergency room, with police, etc. If it is a possibility for a child it is something to consider.

[mamanoish]

When we first received our diagnosis, I had occasionally made comments to others who were being judgemental. Now I only do if it seems appropriate for that situation. And often in the case of meltdowns, I don't say anything. Sometimes my older DS will speak up for his brother and tell people "my brother has autism, so sometimes we just have to be patient with him!" 

My son's trigger is grocery stores or places where he has to sit in a cart or stroller so that I can make it through the store. I often spend 10 minutes trying to get him to sit, calm him down and explain to him what we're doing. People look at me like I'm a huge pushover. Most of the time I ignore it. As long as my son feels comfortable and our family can go about our day, screw the rest of those people. I find myself most often telling strangers about his DX if they are trying to get up in his face, asking questions or something like that. I just kindly say "he has autism, so he might not answer you" or I help DS answer the question/deal with the situation so he can better respond next time. 

It's hard, I definitely offer big . Sometimes I don't say anything, then kick myself later for NOT saying anything. Recently someone commented about him "still being in those cloth diapers." and I didn't stand up and say that he has autism, and I kicked myself for it later... because I know they were just thinking that I'm a bad mom, don't try enough or that he gets away with too much. I think it's something we all struggle with as parents to little ones on the spectrum. 

[Breathless Wonder]

It is interesting because I think that most people that would say something negative are probably not going to care if your child has a diagnosis or not. There are still many people out there that do not believe in special needs (specifically ones they can't SEE). They just think a diagnosis is a cop out for a poorly raised child. Or they might be a person who doesn't understand what the label really means, and so it won't matter. So I suppose even though my gut instinct would be to try and explain, in reality, focusing on dealing with my child is the best course of action.

[Linda on the move]

Originally Posted by Breathless Wonder 

There are still many people out there that do not believe in special needs (specifically ones they can't SEE). They just think a diagnosis is a cop out for a poorly raised child.

yes, and I think this is more true for some dx's than others. ADD being one that is very, very often blamed on parenting. With ASD, a lot of people have notions about what an autistic person acts like, so unless your kid is acting like Rain Man, stating that a kid is on the spectrum *can* lead to disbelief and more confusion/blaming.

[Krystal323]

Interesting thread.  I agree that some people don't "believe in" aspergers/autism/behavioral issues, and prefer to think you're just a lousy parent.  I don't have an official dX for my oldest, but he is on the spectrum, and I've encountered that attitude in action more times than I can count.  

I might carry cards explaining things for ignorant folks, but then, they might still not get it, and anyway, who really cares what those ppl think about you or your family?  

[Rik-E]

I agree with those who have said to assess the situation & decide if saying anything is best. Also to keep calm & have your main focus on your child's needs.

There have been times when I state that my son has aspergers/ anxiety/ sensory issues, but generally I just ignore the ignorant masses.

Instances such as playgroups, church, clubs, or mama's meetup groups when people will be around my son a number of times I normally mention his special needs when he is out of earshot so the other parents are aware & hopefully will alert me of any issues instead trying to handle things themselves. More often than not there are other special kids in the group so I may end up with a new parent friend who understands the extra work & care involved.

[Piglet68]

Thanks so much, everyone. Roar, you have a good point and that is why I am hesitant about saying that in front of DS. I don't know how he would take it, whether he would want me telling people that, etc. He is aware that he is "different" in some ways, and he feels bad that he has "rages" and "temper problems" as he calls it (he's still wrapping his head around the word "autism"). He doesn't talk much about his feelings, you just sort of have to wait and occasionally he throws out these deep thoughts he's having. 

I also agree that there are people out there who would just "pooh-pooh" the diagnosis and blame it on bad parenting anyways. So I suppose you really can't win. And while yes, these are people I don't know, we live in a small town and this is the grocery store many people go to regularly so we are not totally anonymous. Mostly it's just that I have huge issues with having such attention drawn to me, I freeze up and get anxious. Then I take it out on DS (I'm much better at that now, but still say things I wish I didn't). I suppose  you couldn't come up with a better "poster child" image of the proverbial "spoiled brat" than a kid who has just been handed a bag of Ju Jubes, drops a couple, screams in frustration and throws the whole bag. In retrospect I suppose I can laugh at it.

Sigh. I do wish there was more public awareness. Around people who know about it I get nothing but support and sympathy. It feels amazing to be around someone and have them say something like "my kids are on the spectrum too" and know that they totally get it. Frankly, I think it would have much larger social benefits because even NT kids can be judged that way when they are just "being kids". 

Anyways, it's just really nice to chat about this with people who have BTDT.

[Zan&Zav]

I do tell people. His 7 year old brother also tells people. I think it helps him understand that he is a little differant, then he knows why people don't react the same as he does. I don't want him to hurt when people look at him like a nut when he tries to explain the circulatory system to them at age 5. I tell him it's like wearing glasses, or having black hair. It's just one of those things that make people differant. And if everyone wasn't differant the world would be boring. He gets it, more then most adults do.

[Zan&Zav]

wanted to add, with the major meltdowns I usually just try to get out of the situation. If anyone gets in my way I will say, he has autism, he can't handle this situation anymore, no, talking to him won't help, no spanking/grounding/whatever you are suggesting won't work, get out of my way.

[SuzyLee]

DS has global developmental delays.  Typically he can handle grocery store situations fine.  One time though, we had a little incident with the kiddie cart, so I went and put it away.

The ENTIRE rest of the shopping trip, he followed me around screaming "But I WANT the little boy cart!....  But I WANT the little boy cart".  All my efforts to explain and calm him down were useless, so I gave up and just got the shopping done while he wailed.  

No fewer than 5 women stopped me and said variations of "oh honey, I've been there too, you poor thing can I help you?".

I still cry when I think of that.  it made me feel so good to know I wasnt the only one.  SN or not, ALL kids have freakouts and most of the the poeple "staring" at you are probably just reminiscing about how *their* kid once had a complete and total grocery store meltdown.