do you tell strangers about your child's DX when they behave inappropriately? - Page 2

[AAgrippina]

Originally Posted by 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.

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."  I don't honestly advocate being a wise-@ss in these situations, but it does occasionally pay to see the humor of it all. 

Hugs!

[Linda on the move]

Originally Posted by SuzyLee 
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! 

Originally Posted by AAgrippina 

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.

[AAgrippina]

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?

[SpottedFoxx]

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.

[AAgrippina]

Hi Fox.    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.

[Linda on the move]

Originally Posted by AAgrippina 

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.

[SpottedFoxx]

Originally Posted by AAgrippina 

Hi Fox.    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.

[Heavenly]

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.

[Piglet68]

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.