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

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#1 of 29 Old 11-07-2011, 04:09 PM - Thread Starter
 
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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. 


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#2 of 29 Old 11-08-2011, 05:35 AM
 
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{{{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.

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#3 of 29 Old 11-08-2011, 05:58 AM
 
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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.

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#4 of 29 Old 11-08-2011, 07:02 AM
 
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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.

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#5 of 29 Old 11-08-2011, 09:30 AM
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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. 


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#6 of 29 Old 11-08-2011, 06:22 PM - Thread Starter
 
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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. 


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#7 of 29 Old 11-09-2011, 02:06 AM
 
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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. 


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#8 of 29 Old 11-09-2011, 04:38 AM
 
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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.


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#9 of 29 Old 11-10-2011, 08:56 AM
 
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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.

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#10 of 29 Old 11-10-2011, 11:20 AM
 
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Originally Posted by Roar View Post

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


 

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

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#11 of 29 Old 11-10-2011, 04:23 PM
 
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ROTFLMAO.gif  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.

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#12 of 29 Old 11-10-2011, 04:32 PM
 
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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 hug2.gif. 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. 


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#13 of 29 Old 11-10-2011, 04:39 PM
 
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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.
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#14 of 29 Old 11-10-2011, 04:51 PM
 
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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.


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#15 of 29 Old 11-10-2011, 09:13 PM
 
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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?  hug2.gif


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#16 of 29 Old 11-11-2011, 12:16 PM
 
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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.

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#17 of 29 Old 11-11-2011, 05:08 PM - Thread Starter
 
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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.


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#18 of 29 Old 11-12-2011, 07:07 PM
 
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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.

 

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#19 of 29 Old 11-12-2011, 07:09 PM
 
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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.

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#20 of 29 Old 11-21-2011, 07:38 AM
 
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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.  


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#21 of 29 Old 11-21-2011, 09:03 AM
 
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Quote:
Originally Posted by Roar View Post

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.


I second this 100%.  I never use the word "Autism" or "Asperger's" in my son's hearing, although privately we have discussed the special, different ways that his brain works (which, for example, allows him really super good night vision).  The labels are not helpful because they concretize an identity. Even for children, identity formation is an enormous and complicated undertaking. The use of labels, especially as explanatory devices, just doesn't help in the long run. I don't think passing out cards is a good idea either (expensive, wasteful--- people just pitch them when they're finished reading them). The fact of the matter is, 1 in 100 kids is somewhere in the spectrum and 100 in 100 kids will have a tantrum at some point in a public place. People either gotta get used to it, or find another planet to live on because the ASD kids are going to rule the world. Breathe through your nose, smile politely, and if you need to say something to let off some tension, just tell the cashier (or ice-cream man, or unfortunate person stuck in the elevator with you) that you appreciate their patience. No explanation.

 

One time, when I received a really mean comment (on the order of "some children just shouldn't be allowed in public"), I looked at the lady very levelly and said, "Little Timmy didn't get his crack fix this morning and has been grumpy ever since. Can we borrow your crack pipe?"  She looked shocked and said, "I don't smoke crack!" And I smiled, very nicely, and said: "Oh. My mistake. I thought you were in between highs, and that's why you were so rude."  ROTFLMAO.gifI don't honestly advocate being a wise-@ss in these situations, but it does occasionally pay to see the humor of it all. 

 

Hugs!

 


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#22 of 29 Old 11-21-2011, 02:31 PM
 
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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


That is so sweet! 

 


 

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I never use the word "Autism" or "Asperger's" in my son's hearing, although privately we have discussed the special, different ways that his brain works (which, for example, allows him really super good night vision).  The labels are not helpful because they concretize an identity.


 


 

My DD knows her DX, and that has been a very positive thing for her. Ultimately, if you kid is on the spectrum, they will know it. It's really a whole different issue, but yet related. Although I don't generally tell strangers my DD's dx, its not because it's a secret from her. It's just that it's on a need-to-know-basis, and strangers don't need to know.

 

Unless your kid is mislabeled, being on the spectrum IS part of their identity. Believing anything else is just living denial.

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#23 of 29 Old 11-22-2011, 12:44 AM
 
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My DD knows her DX, and that has been a very positive thing for her. Ultimately, if you kid is on the spectrum, they will know it. It's really a whole different issue, but yet related. Although I don't generally tell strangers my DD's dx, its not because it's a secret from her. It's just that it's on a need-to-know-basis, and strangers don't need to know.

 

Unless your kid is mislabeled, being on the spectrum IS part of their identity. Believing anything else is just living denial.


 

  It sounds like you are very comfortable with your family's way of approaching this, which is great. There's no need to be defensive of finding something that works for you and your child. I'm coming at this from my training as an anthropologist--- all identities are culturally manufactured. There is a strong current in adult ASD culture that resists what we might call "neurotypical normativity," i.e. the idea that neurodivergent individuals are abnormal and should be changed or "cured" in any way. My son's dad is ASD as well, and has an odd, exciting, fulfilling life--- he would no more introduce himself as Jon the Aspergian than I would introduce myself Amelia the Neurotypical. I'm not saying that ASD individuals shouldn't be aware of their diagnosis, but again... those diagnoses are culturally and temporally constructed too! What is considered autism in one country is giftedness in another country, or insanity, or eccentricity. If young children (for example, the sweet 7-year-old with the candy above) are constantly hearing their diagnosis as an explanatory label for their behavior, it seals the identity of ASD people = this thing. ASD kids = act this way. By and large we're talking about very literal individuals, so my approach has been to let my DS construct his own idea of who he is, what his capabilities and strengths are, and where the challenges lie. That's appropriate for our family, at this time (he just turned 9). Every child is different, and every year of life is different as well, so what works for one might not for another.  I think there's a fundamental difference between "keeping something a secret" from a child, and not boxing them into a label. Kwim? smile.gif

 


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#24 of 29 Old 11-22-2011, 05:07 AM
 
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AA - while I understand not wanting your child to be boxed in, do you think it's fair not to share the way the rest of the world may view him/her?  Like it or not, if your child is on the spectrum, there will come a time where an adult or another child will use the "a" word in describing him/her.  I'd imagine that if a child knows what autism is but not that they are autistic, it may emotionally hurt the child.  They may think that you are, in fact, hiding something from them and if you can't be honest, maybe something is seriously wrong with them.   I can share that what I finally was diagnosed (age 19) with dyslexia, even though I was an adult, I was crushed.  My parents hid the fact that I had a learning disability from me.  I was 42 when diagnosed with ADHD and again, felt that more could have been done for me had I carried an appropriate "label" in school instead of teachers telling me I was stupid and lazy.

 

Not trying to challenge your beliefs, just understand.

 

 


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#25 of 29 Old 11-22-2011, 05:55 AM
 
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Hi Fox.  smile.gif  Again, I'm not hiding anything from my child. As I said before, there is a family history of ASD and we are very open about it. I just don't talk about him in the third person when he is standing right there, i.e. "My child is autistic," and I don't use it as an excuse for his seemingly odd behavior. I think Linda pointed out above that some people are going to think what they think no matter what you do or say. To get back to the subject of handling public meltdowns, I don't find it helpful to offer ASD as an explanation. I find it more helpful to focus on the child and help them through the moment.


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#26 of 29 Old 11-22-2011, 06:51 AM
 
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Originally Posted by AAgrippina View Post

There is a strong current in adult ASD culture that resists what we might call "neurotypical normativity," i.e. the idea that neurodivergent individuals are abnormal and should be changed or "cured" in any way. My son's dad is ASD as well, and has an odd, exciting, fulfilling life--- he would no more introduce himself as Jon the Aspergian than I would introduce myself Amelia the Neurotypical. I'm not saying that ASD individuals shouldn't be aware of their diagnosis, but again... those diagnoses are culturally and temporally constructed too!

 

 

 

But your assumption is that having a autism diagnosis is a negative thing, and that is YOUR assumption and not anyone else's. (I see you are in  Britain, and it is my experience that Brits are far more negative about differences than Americans).

 

While many do believe that autism doesn't need to be "cured" that is a far, far cry from feeling that those who meet the criteria of autism don't have a right to that information and to resources that could be helpful for them. Having a DX can be the first step to a school that really works for a child, and at some point, it just can't be a secret and a parent still get their kid what they need.

 

My DD knows and is comfortable with her dx, and feels that being neurotypical is highly overrated. A lot of things are social constructs, but when attempting to make sense of who we are and how we fit into our society, understanding things like what is considered neurotypical and how one is different from that is helpful, not hurtful. It opens the doors to others who are different in the same way, accommodations that make the world more manageable etc.

Of course, how old or developmental mature a child should be, how they should be told, etc. are all difficult questions that depend so much on the individual circumstances, but I disagree with your fundamental believe that autism should be kept a secret from a child because it is such a negative social construct, or that knowing their dx will limit them in any way.


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#27 of 29 Old 11-22-2011, 08:35 AM
 
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Originally Posted by AAgrippina View Post

Hi Fox.  smile.gif  Again, I'm not hiding anything from my child. As I said before, there is a family history of ASD and we are very open about it. I just don't talk about him in the third person when he is standing right there, i.e. "My child is autistic," and I don't use it as an excuse for his seemingly odd behavior. I think Linda pointed out above that some people are going to think what they think no matter what you do or say. To get back to the subject of handling public meltdowns, I don't find it helpful to offer ASD as an explanation. I find it more helpful to focus on the child and help them through the moment.



I think speaking of ANYONE in the third person while they are standing there is just rude.  I am all for person first language.  Yes, helping a child through a moment should always be any parent's first focus, regardless of whether that child has a "label" or not but we are human and sometimes, when faced with a rough situation, reach out to those around us we feel are judging us to offer an explanation can be helpful to the parent and maybe even to the child and those witnessing the event.

 

A few months back, we were in a local restaurant.  I noticed a family a few tables away.  I noticed them because I had seen their son at our local Jewish Community Center.   We were about half way through our breakfast when the boy had a huge meltdown complete with him taking off his shoes.  The mother came over to our table and blurted out "I'm so sorry to have disturbed your breakfast, my son is autistic and is having a bad day" and she promptly turned, grabbed her son and took off out the door.  My husband just smiled at me and said "go ahead".  I chased her and when I finally caught up, she was on the verge of tears and trying to get her son together.  I stopped her and asked her to never feel the need to apologize for her sweet son again.  We all have bad days where out kids do all kinds of crazy things.  If all he does is yell and take off his shoes, they're ahead of the game (my friend's sister, totally NT, would strip naked and run down the street when she got mad).  At that point, her son was smiling, she was smiling, her parents were smiling and I mentioned that I noticed them from the JCC and we chatted a few minutes about the things our kids do there and that was it.  So... by her reaching out to me for understanding... she and her son got exactly what they needed.  Compassion and understanding.


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#28 of 29 Old 11-22-2011, 02:09 PM
 
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I think in some ways autism is something thart is more acceptable in society and you can tell people your child is autisitc and they are more likely not to judge.  My son (and possibly my youngest daughter) has bipolar disorder, anxiety disorder and ADHD.  When he used to have meltdowns in public I didn't know what to say because mental illness is still totally stigmatized in our society.  It is really sad.  He is stable now but my youngest daughter is having major issues and just once I'd like to not have people look at me like I'm the world's crappiest mother when she starts raging in public.


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#29 of 29 Old 11-22-2011, 07:26 PM - Thread Starter
 
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AAgrippina, I enjoyed hearing your perspective. When I first suspected my kids were on the spectrum I spoke with some people (online) who don't use those labels at all, don't get their kids tested, etc. I truly respected their stance on this, but for me I wasn't comfortable with that. I needed help, and that help was available only with testing and funding and access to programs for kids with official diagnoses. What you describe seems to me to be a "happy medium" where you strive not to use the word to label your kids and create an identity out of it but also appear to be very open with them about their issues, that they are different in some ways, and that there are words people can use to describe that. I'm trying to find that balance myself, which is why I was uncomfortable with blurting out "he's autistic" in a public meltdown situation. But I was also thinking perhaps that would make it better. I realize now after this thread that it likely won't make much difference: people are going to judge anyways, and the downside has been raised by others (how this will affect DS and his image of himself).

 

While this thread was originally about my embarrassment and discomfort with being the centre of negative attention (and being judged about my son or my parenting), it was also about how we use the label of "autistic". Because my child is not in school, but a homeschool program, there is no real need for me to tell the world about his diagnosis. Originally I had planned to tell very few people. But as DS gets older and his behaviour stands out more (especially if he is getting aggressive) I'm finding it helpful. Especially because there are a few families in our homeschool program who have kids on the spectrum and so in that context I'm met with support and understanding. Then there are situations like today where I took DS to the local Therapeutic Riding centre and said he would like to have lessons. The lady was hesitating a bit and I suspected she was wondering if we understood how the place works. I mentioned DS was autistic and she was then able to tell us exactly what to do to get started, as well as some special programs they have for ASD kids (like working with miniature horses). DS was right there and obviously heard me, so it's important to me that he is comfortable with that. But at the same time I don't want him to define himself that way, I think. 

 

I don't know, actually. I'm still trying to figure this out in the context of gentle, respectful parenting. 

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