Saturday, February 4, 2012

Where Are All These Mean People??!!!










(originally written & published on February 4, 2012)



Since I started my Autism Daddy Facebook Page back in April 2011 and this blog in September 2011 it feels like not a day goes by where somebody doesn't post something or make a comment about how some stranger made a snide remark under their breath about their parenting skills or made some direct rude comment to the parents or even directly to the kids.

And I must admit that I read these and of course it makes me sad, but it also makes me feel that somehow this is the one part of our autism experience where the grass is greener on our side.

Somehow I can honestly say that we almost NEVER come across people being rude or murmuring comments under their breath...  and I honestly don't know why.

As I've written many times, we take Mr. Kyle everywhere.  We try to bring him into all sorts of situations from restaurants, to movies, to Yankee baseball games.  Once in a while he surprises us and is a complete angel.  Most times he will hold on for as long as he can but let it be known that he's not thrilled with the situation.  And sometimes he will have an all out meltdown and we need to leave the situation immediately.

But I've almost NEVER had people say anything or whisper under their breath.  Sometimes they stare.  And that can be a bit irritating.  But 9 years back I would have started too.  When we have the service dog with us they definitely stare... and sometimes ask questions which is understandable.  Since we've had our autism service dog (almost 2 years!) I can count on one hand the amount of times I've seen another service dog out in the world, for a blind person or an asd person.  So yes they are kinda rare.  So when you see a dog attached to a flapping kid in your local supermarket it's kinda surprising and people stare and kids ask questions and that can be annoying...

But again it's not people being mean or rude or nasty which is what I often read happens to many of you. 

So it's got me thinking why this is??









Why are people not just out and out mean or rude when they see Kyle being loud, or melting down, or playing with his saliva, or kicking the back of their chair at the movie theater? 

Is it because he's so darn cute and handsome?  The wife feels like that goes a long way in life...  :-)

Is it because we live in a big metropolitan area and folks are more exposed to people with disabilities?

Is it because it's kinda obvious from that Kyle has autism within seconds of seeing/ meeting him?  Maybe it's harder for the kids who are more typical?  Maybe when they have a meltdown it seems more shocking and out of place to the outside world.  And they think it's a spoiled kid? 

Maybe it's just because he is only 8 years old and people will make mean/ rude comments when he's 14 years old and still licking the pole in the supermarket?

Or maybe people are being mean/ rude/ staring more than we even realize but we are so wrapped up in our own world that we don't even notice that people are being a--holes?

What normally seems to happen to us when we are out in public with Mr. Kyle is people will stare for a second or two and then most seem to get it and look away cuz they don't want to be caught staring like a schmuck, or they give us a knowing smile/ smirk/ nod as if to say "I get it.  My (brother/friend/cousin) has a kid just like that."  Or they give us a quick pity look. 

Kids will stare sometimes...sometimes alot... and my wife will snap them out of it by saying directly to them "Hi how are you?!" and they get all shy and scurry away.  Or sometimes they will ask direct questions "Why is he making those sounds?" and we will explain.  And we've found that very often kids are staring more out of concern ("why is that kid crying") than out of "that kid is weird".

But all in all we rarely if EVER run into people who are just mean or rude or a--holes.  It seems to us that for the most part people are inherently nice & polite & patient with us and sometimes go out of their way to make us feel welcome...And sometimes they are just indifferent & non-plussed.  Sometimes I think because we live in a big metro area that people are so busy and in their own world that they barely even notice us... which is fine by me and is sorta the biggest compliment of all!  :-) 

Here's a perfect example of people being out of their way to be nice.  We were at a restaurant for breakfast a few weeks ago and Kyle was melting down pretty badly.  So bad that the wife took him out to the car so I could finish my breakfast in peace.  And then I was gonna go out and let her come back in to finish eating.  Well the waitress came over and went out of her way to say that we weren't bothering anybody and that we didn't need to take our son out.  I thanked her big time but explained that it was better for him if he left, but I appreciated her saying that.

How did we get so lucky?  Where are you guys hiding all these mean people?  Actually don't tell me cuz you guys can keep them. 

:-)

THE END
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If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above or by going to http://www.amazon.com/?tag=a050ef-20?  This way I can make a little money to help pay for my son's after school & weekend therapies.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!





81 comments:

  1. This comment has been removed by the author.

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  2. I am petrified of the mean people but have yet to meet them. I'm still battling with my husband to take our boy out more. Even if it means a little meltdown He needs to get out.
    I have read about these meanies but found people to go out of their way to help.
    Teri

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  3. I do think having a severely disabled child is "easier" in public. (being adorable and seriously disabled is icing on the cake!) We have had the same experience as you, most people are VERY nice and helpful to us, holding doors for our stroller or even letting us check out first if it is obvious he's getting ready to lose his shit! I know people stare (sometimes I can't blame them we are alot to see) but I'm usually too busy focusing on Johnny so I don't notice. ;)

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    1. I agree. My daughter is on the high functioning side and I think people assume that she is just spoiled or I don't discipline her enough rather than thinking she has ASD. When she was an infant she had horrible colic and cried 12-14 hours out of every day. My first time out with her alone to Target a woman actually walked up and told me I should go home that I was disturbing everyone!

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    2. I also agree. My son is high functioning. He had a meltdown in Wal-Mart once and an old man walked over to me and told me that it was too bad that I didn't discipline my child. There are lots of mean people out there.

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  4. I have a very mean 'Mother in Law' that likes to make ignorant comments about my daughter's autism, and my parenting abilities. Please... Take her away... You can have her.

    I'm very happy to hear you havent encountered too many mean comments. I've heard a few remarks made by strangers about my daughter, but we brush them off. If we are lucky, we run into the people that make those remarks with our shopping trolley!

    Keep up the great work autism daddy!

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    1. Have you gotten her a book on autism, possibly as a gift? It sounds silly, but if it's short enough, she might have the patience to read it, but it sounds like the "for Dummies" one might stretch her patience.
      A little understanding goes a looong way.

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  5. one time when judah was flipping out in an elmers at about two. there was a guy staring and making obvious rude comments to his breakfast partner. I walked up to his table carrying my son. and said "my son has autism,whats your excuse asshole? take a picture it lasts longer" and then proceded to take Judah to walk around out side while mu husband and brother got our food to go. Since then Ive learned to keep my own cool better and just ignore people. which is getting harder at Judahs current stage at age six and a half where he LOVES to yell the word "penis" in public as loud and.oftem as he can.

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  6. I try really hard to live in a bubble when we go out. In my small world, there's not a lot of indifference. They're either nice and go out of their way to be kind, or they don't understand why I can't control my kid & give me dirty looks every time they pass us in the grocery store. Your good luck is probably a combination of everything you mentioned.:)

    Cassie

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  7. We have had almost the exact same experiences that you have had. Many of my friends have had name calling and or unsolicited parenting advice.
    We have yet to encounter verbal ignorance. Staring, yes. But, I feel the same as you, I would have stared too.many years ago.
    My Jace is 8 yes. Old also. And, he can get quite loud when he is happy. I think it surprises people, so they look.
    I hope we never encounter the ignorance that others have. I am afraid of what my response may be.
    Kelly

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  8. We've had mostly great experiences out in public with strangers and those that know us are amazingly gracious and giving. Where I find the meanness is usually when I'm visiting ASD communities online and people polarize over some treatment/cause issue. Those of you who are putting yourselves out there in blogs and on Facebook are pretty courageous because you never know when you're going to set off one of these debates. I've seen some pretty ugly ones. Thanks for putting yourself out there for those of us who don't. It's so good to know we're not alone!
    Kat

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  9. My daughter is about to be 12, and we rarely have issues with mean people either. Most people comment about how beautiful she is, and try to be helpful or kind. She is severe, so it is obvious and we do get lots of questions, but it is just people wanting to understand. However, the few times we have encountered mean people it is awful! And most of the negative comes from totally unexpected sources, acquaintances and family, which makes it worse! But the kind people by far outnumber the mean people.

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  10. I can relate. My son is 4 yrs old, he looks like a "typical" child. But when he make his noises, which can get really loud. People do stare and give me bad looks. But they keep it moving. I usually get asked why he is crying or making noise? They usually try to talk to him and tell him that big boys don't cry. I just smile and keep going. I did have a bad experiance while travling. I was checking in at the airport and this ladies told me that i need to teach my son how to keep quiet cause he was being annonying. I was like he has autism, which i think she didn't know what it was. I explained to her that its a way for him to calm down. In long island, NY where i live i haven't meet a rude person.

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    1. I really don't know how I would react in that situation. I would like to think that I would be civil and kind...

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    2. I would have a real hard time being nice specially if they were being a dick...I sometimes see the way people look at him when he is jumping or going in circles..and in my head I am saying. Go ahead say something..I am waiting for it..my son is usually really good in stores and stuff so I don't hear people say much but I don't think I could keep my cool if they did

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  11. We get the jerks more often, because my son is so called "high functioning" so he is verbal and really doesn't do alot of stimming. But he has stripped at Target and knocked an entire aisle of merchandise all because he wanted a particular $5.00 toy that they didn't have in stock. Before he was diagnosed at the age of 4, my husbands aunt gave me a book for Christmas, "Nanny 911" because maybe I could learn a few things. This sucked more because it was from a family member and not a stranger.

    usually in public my husband will tell them to eff off, I usually just stare them down because I don't want my son to have to hear me explain his disabilty. It's not like he doesn't know he has it, but he is so smart and can manipulate situations more if he thinks it is working.

    Everyone of our ASD kids are completely unique in their ASD, but I am happy that you havn't noticed it or have kinder people because it adds a little more heartbreak to the situation.

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  12. I don't know how it s for everyone else but your sons Autism might be more obvious than others. Since my kids are starting to get older people are starting to notice their behavior like my daughter is 2 and only babbles and makes noises, she spins and claps. My son however is higher functioning so when people see him they just think he's a brat. We are moving out of state soon for Autism services and I have spoken to a gazillion school districts as well as parents in those districts and that was one question I asked everyone of them and they all said the same thing. I asked if they dealt with bullying and so on. They said that when the child is higher on the spectrum it's more obvious to kids so they don't get picked on but the kids that are higher functioning other kids don't really know what's wrong with them, just that something is "off" and those are generally the kids that get picked on. We've only been in the asd community for 6 months but one thing I can say is oh the starring! It's really irritating to me because I know their wheels are spinning about my kids

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  13. I haven't had a chance to read all the comments yet, but I think I've figured something out a couple months ago. It's me and not my daughter, if my kid is doing something and I am feeling like "Gee i hope this doesn't bother anyone/I hope no one says anything" I think people pick up on my lack of confidence, and they think they are trying to help. But If I face the situation with the attitude of "We have every right to be here as anyone else and she can't help what she is doing so let her be!" people keep quiet and don't say a thing.

    anyway maybe I',m crazy but so far this is working for us!

    Mary-Ann

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    1. Your confidence is key! Well said. I work in a special ed classroom with LF non-verbal autistic kids who can sometimes be aggressive. When we go out in to the school at large, the more confidence I project, the more my students are accepted by the other kids in the school. In learning to project confidence, I've seen a HUGE difference in how my students are treated by other kids and staff at the school. At first, we did get a lot of dirty looks and comments like "why is he taking his students out in public they are out of control". Now students and staff go out of their way to greet us.

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  14. My daughter is almost 14. We get the stares because it's unusual to see a parent of a "teenage" child cutting up her food or trying to calm them down about the noise in the room. People don't understand what is "wrong" with her and assume all kinds of things. Most people wouldn't look at us twice if she were 5 but she isn't 5. I get the majority of "mean people comments" from my extended family. They don't/won't try to understand Aspergers or my daughter. They say and do very mean and hurtful things to both of us. I try to stay away from people who continually show they aren't willing to learn about Aspergers. That means we stay away from a lot of our extended family. Many people, in public, just comment on how pretty my daughter is and move on. Sometimes, we get the "why are you babying her" look. But strangers are a lot less hurtful than my family has turned out to be~Angela Mitchell Atkinson

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  15. In the 12 years we have been battling this, many advocacy groups have made great strides in public awareness which I believe helps. More and more awareness in schools teaches children and that can have a trickle home affect as well. I also think location has a lot fo do with it. We lived in a medium community in Montana and every time a comment was made, it was usually some old farmer's wife or grandma where you could "discipline" this out of existance. We still get ignorant comments occassionally when my son has difficulty out in public but, more often than not, people are always saying hi, giving him high-fives and he's the most popular guy around. And, never does this happen in school. He is one of the most popular kids and you will have a whole school on your case if you say anything bad about him. But, after 13 years of therapy (behavioral, speech, and occupational), my guy is doing remarkable well.

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  16. I feel the same way! My son is relatively well mannered in public. If anything he is loud, but he is deaf, so he doesn't even notice ;-) I can honestly say that way more people have approached me to tell me how freakin' cute he is than anything else. We get the occasional stare when he is being loud, but again, most people think it's funny. He gets really excited when we go out to eat, so that usually gets him some attention (mostly positive). For this reason, though, I think it makes those "rude" people really stand out to me. I mean, if 99% of the world can think my kid is adorable, even when he is being obnoxious, why can the other 1%? I have this one friend (God bless her), who insists on telling me every time she sees me how cute he is and how "he doesn't look like there is anything wrong with him". I kind of hate it, but I know she means no harm, so I let it go. I guess both fortunately and unfortunately being cute does go a long way.

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  17. My son is 3 so I think we still get a break because they think he's young. I have had 1 bad experience at a friend's daughter's birthday party where an older gentleman said loudly "Something is wrong with him." I simply replied, "he has autism" and then he shut up stunned that I'd heard his loud whisper. I am usually by myself with all 3 kids-- the twins in their stroller and JD holding my hand or in the shopping cart, so most folks are nice to hold doors, offer to help carry bags, or whatever they feel is helpful. We're fortunate that we've only had to deal with stares. But hey, I figure they're staring at the crazy mom with twins and a singleton tot who is happily clutching a hot wheel and smiling.

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  18. We do not get much more than stares. I do not know if that is because I do not notice or pay attention or not, but I guess it doesn't matter. I think people are often judgemental of my high functioning guys (based on the looks on their faces), but here is the thing - It is not humanly possible for me to care any less. If they are not accepting of my kids, what are the chances I am going to develop any lifelong relationship with them anyway? Besides, if I do not know how to blow off judgemental people, how can I expect my kids to? I generally find people to be especially kind, though. Just a suggestion for those who run into this, (my corny idea of the day) maybe keeping little cards with a brief description of some of the symptoms of autism or how it affects your child, and on the back a little note that says "Just so you understand...some days are harder for them than others. A smile from a stranger can go a really long way! :)". Kill them with kindness and make them think about how they make the next family feel. You will have kicked autism awareness ass and they will likely be more careful next time they open their mouth. As innapropriate as it is for them to act that way, most of that attitude comes from a lack of understanding.

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  19. my son has aspergers and because his behavior issues are set off by minut sensory issues family and and friends are always commenting that he needs more disapline......i wish they would just get more education on the matter!

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    1. Both my boys have autism. My oldest is 32. When I took him to a not nice pediatrician at the age of 4, he told me it was all my fault, I did not know how to discipline him, and the best only treatment he wanted to do was shock treatment!!! Can you imagine, to want to shock someone!!! He was of an old and I mean old mind set!! He was a younge Dr..
      Needless to say I did not agree. I soon left that province to a better more up to date on. Great move, made all the difference to both my boys. They are both thriving, and progressing beautifully.
      Sincerely Carol

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  20. I wish I could say the same as you. Sadly I come from a small town in Kansas and, generally speaking, people here are very cruel...

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  21. My Noah will be 5 tomorrow and once I brought him to a nearby childrens museum...well of course they had to have the water table on the first floor right there so we ended up there the entire time! Well we werent there very long as we drove w our neighbor and her typical son and there was a young girl there clearly for her birthday party...well my Noah is splashing the water around like crazy and splashed one of the girls they just stared at him lile he had 20 heads and the mother made some comment that was it I broke down n grabbed my son and ran outside if this was now I probably would had splahed the lady w a ton of water referenced w some nice gestures ;)

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  22. I have had some dirty looks but no comments. But 2 weeks ago I got the look that said a million hurtful words in itself. I was in line paying at the grocery store and my son started throwing a fit. There was nothing I could do but let him throw it until I finished paying. I knew this from previous experiences. The cashier was so kind. It turned out she used to work with special needs students at a local elementary. She recognized the signs immediately and reassured me. I have long since overcome my embarrassment in these situations but have a hard time forgetting the glares or judgemental stares. The woman behind me was staring right past me with an angry, disgusted look the whole time. I kept trying to make eye contact with her to give her an apology for the disruption but she refused. Her lack of compassion was hurtful. I realize she did not "know". And I understand her reaction. But unfortunately it bothered me. ~Olivia P.

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  23. My son is 13, and very high functioning, I have noticed that the mean people are crawling out of the woodwork just about now. I get it. Big guy, looks almost adult and totally normal, having a fit worthy of a two year old for no discernable reason. They don't know that the sound that the flourescent lights make hurts his ears, or that the perfume they put on six hours ago makes him gag. I get it. I just couldn't give a shit less.

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  24. My son if severely autistic and non verbal, and it is incredibly easy to spot that he has a severe disability going on. He is incredibly handsome, and really big for his age. I have had the pleasure to run across very understanding people, and I have unfortunately had to deal with incredibly rude jerks. More jerks than I can count, actually. I do think that where you live makes a difference. I live in a relatively small suburban/rural city in southern california. But I'm not afraid of acting like a bitch right back lol :)

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  25. My son is a very large 7 year old and I had my worst experience ever at a wiggles concert where my boy had a moment. The woman in front of me called the usher over, refused to speak to me, even as I explained John had special needs. Basically she demanded we were moved and the mob joined in. She reckoned her child was in danger! It was horrific. Normally people show tolerance when u explain, but this woman was cruel. My son and I were in tears and my husband shocked. It shook me up for weeks and I really struggled taking him out

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    1. That is unreal!!! Shame on those people! I had a problem at a "McDonalds" play area where one woman wanted my son out of there, afraid for her grandson. Little did she care that he was not harmful or contagious(which she expressed). I had the managers permission for him to have his socks off,as he could negotiate the equipment.He was with his worker,and I was also there.I am the one that should of been worried about him in his bare feet. That manager(bless him)was willing to have a talk with her. It's like this, people of that mind set will never change their minds(takes all kinds to make this world).You and your child have every right to go to these places! I'm wondering, did they ask you to leave?
      The manager of McDonalds did not want me to go to the press and claim descrimination! That is what happened to you and yours! Please don't let that one thing stop you from trying again!
      Sincerely Carol

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    2. Should of read could not negotiate the equipment!
      I have another story about my neighbor....when my oldest became a teenager, she had the nerve to ask me if was going to have him put away! I said, what do you mean? Her answer... are you not afraid for your community!!! I was dumb founded. Then when I had my youngest, whom is also autistic and she found out....her reply...that's too bad.
      You know what, what goes around comes around. I found a few years later one of her grandsons has autism. I wonder how she feels about him?!!
      Sincerely Carol

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  26. I think the fact that my son's autism is not as "obvious" makes a big difference. It's a mixed bag of people that we run into. Some are very nice and just act as if the melt downs and talking loudly and repetitively are "normal" anyhow, while others ask him to shut up. We find so much support in our church and people treat him like he should be treated, just like any other member of the church. But in our rural community and school district it is another story. They don't "get it" and seem to enjoy pointing out his differences. It is so sad to see such narrowminded people.

    -Momma Love

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  27. My son has severe, classic autism and I've pretty much had the same experience as you. I think you nailed it when you said "Is it because it's kinda obvious from that Kyle has autism within seconds of seeing/ meeting him? Maybe it's harder for the kids who are more typical?"

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  28. People stare at us sometimes because my kid needs to take a break and lie down in the middle of the mall and they have places to go and we are in their way. We are about to get a service dog so I anticipate that people will be a little more curious and understanding. But I believe most of it is our own perception. For a year I barely left the house because everywhere I went people were staring at me with these judgmental why don't you discipline your son kinda way. But then it suddenly occurred to me that maybe they aren't looking at us or saying that at all and I just think they are because I question that in myself. Maybe I should discipline him better ect. When I go about the world with the attitude that I'm doing the best I can and my son has the right to experience the world in his own way I get less judgemental looks and more curious looks. Sometimes I take a minute to explain but often I don't because I'm trying to enjoy an outing with my boy.

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  29. You know I think it is probably because your son is so obviously autistic. And if you have the service dog with you, the ads an element of protection. My son is not obviously autistic. He just seems rude to people. I homeschool him, and once at an interview for a class program we were looking into, the director was very harsh with me that he wasn't able to tell her what she asked, like the months of the year etc. If your child appears normal, then they are expected to act normal.

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  30. We get a mixed bag--most people are at least polite enough to keep their disdain to themselves. With a bad melt-down, I've gotten plenty of knowing smiles, a few "hang in there momma," and even an occasional "that boy needs his butt spanked" (not in those words, of course). But maybe we get a few random rude comments because Jake is five and looks and acts just like most typical five-year-old boys--BAD! lol But I have to admit, I've never really been blind-sided or felt completely thrown off until we celebrated his 5th birthday at a bounce house. Most people don't know anything is off with Jake until he has a meltdown...or until they try to engage him in conversation--not big on the small talk! Oh yeah...and he has a crazy fixation with lights. Soooo naturally, this fixation would show its ugly face at a packed bounce house. No, he didn't turn the lights out on a hundred+ kids in moonwalks (though that would have been slightly hysterical). But he DID find a switch in the small arcade room by the restrooms. I saw it and was on him in seconds. Unfortunately, that switch didn't just control the arcade...but also the restrooms. EEEK! Halfway through my futile attempt to explain why he shouldn't turn the lights out (which fell on deaf ears)a VERY angry woman came out of the ladies room. She let me know about the trauma it caused her and I apologized sincerely and then turned back to Jake who was jumping at the switch, determined for a repeat. Most people would have just walked away annoyed with us and told stories about us for the next few days...oh but not this one. She then turned her attention to Jake and began griping at him...because apparently I wasn't doing a sufficient job. She actually reached out to grab his arm and make him LOOK at her. I have to admit, this was the closest I've ever come to slapping someone in the face. LIVID! I shoved my had in her face (which is completely out of character for me) and spat through clenched teeth, "I've got this!" I could see her gearing up to come back at me with something and I knew I'd lose it so I managed fumble over, "He's AUTISTIC! You're not even a blip on his radar...I said I'VE GOT THIS!" And she literally recoiled and whispered, "ooooh...okay" and walked away. But I was furious over it! It shouldn't have been a big deal but I HATED that I felt pushed to make excuses for my autistic son. I also didn't love that I wasn't cool-headed enough to quip some silly sarcastic line that made me feel better, made her look stupid and still be funny at the same time--that's sort of my thing. Ahhhh...I'll be ready for the next one! :)
    ~Jake's mom

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  31. Wow, you know, you have articulated everything I've often thought. Our son is plainly and obviously autistic, as evidenced by the constant echolalia and stimming. But we have never had any kind of nasty or mean reactions. In fact, people have been really extra-nice. I have often wondered if our kiddo was just really cute (and I've had the same thought as your wife--cute goes a long way, IMO) and that's why people are willing to overlook or help. And I've even thought that same thing about what it might be like when he is a teen or an adult doing the same things when they won't be cute anymore. I don't have any answers to the questions yet, and I am still working through my feelings about what life will be life when our boy is a teen/adult (okay, I'll admit I'm kind of petrified). I just keep hoping that the rise in diagnoses and the increase in awareness will help make it easier... -Kathy

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  32. We've been lucky as well. My son is more typical looking but can make noises, flap and make faces when he's excited. We don't even get that many stares really. I may just be in our bubble, but most people don't even notice. If they do, I mostly get the sympathetic look. And if a kid is looking at my son, my son will smile and say HI really loud and they just scurry away or just smile and say hi back. I think it may be because we live in a big metropolitan city as well. So much other weirdness around us people don't even pay much attention. Surprisingly, school is where we get stares. We have a mommy mafia that is part of our parent/teacher committee that stare in judgement. So next year, I'm joining the PTC...and lets see if that doesn't change that situation :-)

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  33. It happened to us once.
    y daughter was 3 at the ime. She had a melt down in the supermarket. I admit, I antagonized the situation. She was staring and shaking her head....for some reason, while I usually can ignore such ignorance, i got really pissed this time. I said "Do you have a problem" and she said "yes, you're daughter's a spoiled brat!". I lost it on her, and stupid ignorant B**** just kept insulting my parenting skills. Strangers in the store were coming up to me and apologizing for her. So there are good people in the world.

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  34. I believe there are several things that help, cuteness, and an obvious disability are a couple on top. My girl is high functioning and 20 so when she loses it , it can be ugly. Mostly it's not obvious unless she has a meltdown or laughs. She Stimson some but has a hand flipping thing that's not very obvious.
    I believe another huge part is our perception and expectations. If we go out EXPECTING and ready to jump on the rude people, we tend to see rudeness where it may not be. I have a daughter who sees rudeness where I see curiosity or even compassion. She doesn't care as much any more so there are less rude people now. Go figure.
    ~ Katrina

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  35. Oops - let me add please before somebody gets mad ... YES I know there are rude people in this world. I know that some are judgmental an hateful. I just think that an awful lot of the time, the truly rude ones have set us on the defensive and made us EXPECT that it's rudeness every time someone looks crooked at us. ~ Katrina

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  36. We have a 9 year old VERY high functioning son. In fact, he attends a school for his other behavior issues rather than his ASD issues. As others have mentioned, this can be a catch-22 situation since our children can at first seem to be "typical." So, his outbursts can come as a greater surprise to those around us probably. And we do take him everywhere. We also live in a suburb of a major metropolitan area with a large special ed cooperative that has it's own ASD program with Autism wings in schools at all levels. In addition, we live right next to an Air Force Base, and we have found military personnel to be extremely informed and tolerant of special needs.

    All that said, we have rarely ever run into a rude or mean person when our son has a meltdown or uses inappropriate behavior. I attribute much of this to our area and to our luck, but for the most part we have found people to be genuinely curious to understand and to help. Strangers have be incredibly gracious toward our son's behavior. Which also brings me to another thought. We are proactive parents. We have never just let our son run amok in any venue. We are engaged and give him continual feedback about his behavior. I think that most people can tell the parents of a brat vs a parent of a special needs child. One is engaged and the other is either disengaged or enabling. I don't know about all of you, but when I take my son out I am almost hyper-engaged because I know there is a LOT of stimuli out there that will set off his behaviors.

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  37. One of the things I do is put a button/badge on my autistic kid. I have a big selection from buttonsandmore.com but my favorite is "Autistic Kids Rock."
    I think it gives people a heads up, promotes awareness & if she leaves her hat at recess, the teachers know who it belongs to.
    I also have a tee shirt but the buttons are more practical and they have even survived the washing machine.
    I don't meet a lot of mean people. When I do I figure it's their problem not ours. -- Meg

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  38. I have heard several rude comments out in public with my son while he had meltdowns. When my husband is with us and it happens, nobody EVER says anything or gives dirty looks. People are more brave to be assholes to a woman.

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  39. When in a shopping center with my granddaughter, who was 3 at the time, she began to experience a complete meltdown. When she was in DefCon1 we are unable to even touch her as she would scream and run and panic. I had to walk beside her quietly talking to her making comforting noises telling her it would be all right we were leaving and to take deep breaths. A man walked by, stopped and very clearly said, "SOME people should keep their kids home if they can't control them". I admit, I got angry and said, "SOME people should look closer and realize this child has issues and in our case AUTISM" He became deeply embarrassed and hurried away with a fast, "Sorry". I was seething and then began to realize at times when I saw a screaming child I wondered why the parents were not doing something to keep the child happy. Did I have a "karmic" moment then? I do not know but we made it out of the store and she calmed down. I learned no more crowded stores with really bright lights. She is 11 now and loves to shop but we have to keep it at an hour or so then she is ready to go. That was the only Mean person I have encountered directly though we do have stares as we also have a grandson who is classified as Infantile Autistic with a Communication disorder (he is now almost 8) Two ends of the spectrum, two very different experiences when we go anywhere.

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  40. They must all live by me. A store owner told me I should not bring my kid in public if I can't handle him. I told him he had autism. The store owner grabbed my son and put him under his arm and carried him out the store. Another day I was trying to put my sons shoes on in the mall and he banged his head against my face. My lip was bleeding and I continued to try to put his shoes on him and he kept throwing them off. there were over 30 adults watching and three were on cells talking about my child. 1hr later I was still trying and started to cry, lip bleeding and a women finally asked me if I needed help.

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    Replies
    1. You actually let someone physically carry your child out of a store?! That man would be in jail or in pain if he tried that with my son. Maybe you can get involved in local autism groups to help deal with meltdowns.

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  41. First of all thanks for your blog. I appreciate u sharing your experiences. I was at the the store with my husband and my seven year old high functioning son. My son (who was playing my iPhone) and I were walking ahead of my husband and i had stopped to look at something when i looked up there was an elderly gentleman standing in the middle of the aisle looking at my son looking at him. The man actually said "take a picture it last longer." My mouth fell open like I was catching flies and I just stood there shocked that he actually said that. He never looked at me. I was trying to decide whether to rip his head off or keep going. I chose to smile overly sweetly at him and gently scooted my son by him.

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  42. My Granddaughter acts normal alot times, Just not talking But all the sudden something trigers her. That when The mean people seem to come out, Its like they now think it a spoiled chid throwing a fit.. One time I tryed giving her crackers from my purse. this time it did not work.a group was forming to watch and coment. As she throw a fit.. One lady came up and Ask if she had AUTISM.. When I said yes.. she started sing "On top of spaggtti.." Mia stop her fit and tryed to sing along.. In her broken hmm and different sounds.
    Everyone Kinda just looked ar Her.. One did say she was sorry for her actions and said I really thought she was just spoiled.. I found out the sing lady was a aid in a speical ed class.. Now that 1 of things I try when mia go off...

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  43. I'm totally stalking your blog these days! I am addicted! It's great BTW. When my twins were younger, 4 and under, we got alot of dirty looks and rude comments mostly because it wasn't obvious they had a disability. People just assumed we were permissive parents with spoiled children. Even my own aunt used to trash talk me and my husband behind our backs before their diagnosis......to which she painfully appologized for later. Our boys were/are unbelievably hyper and defiant. Like with any autistic child you can correct or redirect a behavior a billion times with NO success. So we are the parents always leaving the party early. So people would get to talking or telling us that we need to spank them or stop spoiling them blah blah and so on. I used to be so embarrassed and of course questioned myself as a parent. Now my boys are 7 and the more I learn about Autism and all the many many different forms it comes in, the less I care what others think. My favorite lines I use on rude people are "You dont pay my bills so you have no say in our life." or "Oh do you think you can do a better job with them? Please take them for a day...hell take them for 2 hours with NO MEDS and then we will talk ok?" But now that the boys are 7 it's becoming more obvious they aren't typical kids. Like when people walk up to them and ask their name or age and Kyle screams out "No get away from me!" or Christopher growls and fidgets. It's def easier to tell these days and more and more people recognize it and offer helping hands, which is great!

    Carrie Harmon
    Covington, La

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  44. My son is diagnosed PDD-NOS and he had a horrible meltdown at the hospital while I was trying to get him admitted for some testing he was having done. Hospital staff came to the admitting area, but instead of helping me, they just sat there and stared at me. We also had a women at a restaurant come over to our table, lean over me and say directly to my son "you are embarrassing your mother". All because he threw a little green plastic army man over the booth on to her table. Let's just say I had some choice words of my own for her!

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  45. when ever i go out with my 13 yr old to the grocery store, he makes noises, and jumps around probobly causing folks to give a gander over, but i LOVE handeling these sort of situations- always have- all the way back to when he was little and melted down- simply because the folks wanted to see what i would do . I would speak to him in the sweetest voice i could muster and stay dead calm. I never recieved a dirty look ever or a rude remark.I would speak to him softly saying help mommy pick out some oranges- lets count them. 1-2-3. Or he would pick out all my vegetables and put them in bags worked like a charm= except one time when i was in a store and he was little and adorable and crying and i was letting him cry and some woman acturally tossed a parnenting book into my cart and said "you should read this" haha.

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  46. I had business sized cards made up explaining about autism. I hand them out and tell them have a nice day!

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  47. Excuse my bad spelling. I'm from Sweden. In my experience,as a relative of both ASD people and kids with other disabilities, as well as teaching experience from a special needs class I usually can tell the difference between an underparented child and a special needs one. I now work as a waitress and in my experience the parents with the high functioning ASD kid will be very defensive. Often expecting me to misunderstand their kid and treating me as if I already have, the parent of the severe kid will be totally focused on their kid and there and then. The only one who will be really rude is the parent with the spoiled kid. But. How am I supposed to deal with the situation where I've already been judged. I can try my best but the only one who will notice is the kid. I feel like the parents often are out of reach since we meet for such a short time.
    Emilie.

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  48. Ask them if they are an expert on autism. That will shut them up. I find the older population to be less educated.
    Matt Musikar
    New City NY.

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  49. I agree with a lot of the comments. My G is 11 years old and tall for his age so people assume he is older. He is high functioning but sometimes will flap or have interesting conversations out loud with himself and the looks are really comical. It does not bother me anymore but it used too. If people are genuinely curious then it is an opportunity to educate about Autism that I take advantage of. If not I usually just point at my Autism bracelet and smile....��

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  50. I have been on the receiving end of the ignorant comments. My 10 year old daughter has always been a real prize out in public! I wish I could ignore and believe me I have tried. I just can't. You can say whatever you want about me or even to me because I can defend myself. When you look at my daughter funny I could come unglued. She didn't ask to have all of these development, speech, nuero, GI, Mito, sensory and etc issues. I actually started my blog because of a specific incident that can still bring tears to my eyes as I type this. Check it out sometime. Since you live in my world..trust me..it will piss you off. It's titled "The Reason Behind The Birth of This Blog" Hope you enjoy it. I just signed up for your emails. Can't wait to read more.
    Nikki
    Dysfunctional Dose

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  51. We teach our children not to stare, play with all the children, no one is better than anyone else. No name calling, "how you would feel if someone called you that". Than Josh came along with his ASD,ADHD,Sensory overloaded stimming to the point of destruction.His older brother was 4. First it was he's so cute, you can't tell anything is wrong. Then it was,he's so loving always hugging and being sorry when he's bad.(couldn't sit still,no control over impulses etc. Then the school nurse had me on speed dial.)My first fear was school, how will he be treated ? Panic set in and I was a mess as he jumped on the bus for the first time. I have to say, thank God for the two school districts we've been in. The students treat him like one of the guys, and at the same time they watch out for him,remind him to eat all his lunch, help him when he forgets things. These kids are amazing! Even in public with their peers, It's hey Josh how's it going!. Some adults could take a lesson from them. I think we started having more comments and stares once he was taller than me. He's 14 and 5'6, he'll eventually be around 6'4 like his brother. It's okay to look like a kid while I grasp your arm and steer you through the parking lot, it's okay to throw a fit (meltdown)when you look like a kid. Now that he looks older and is taller, deeper booming voice, it's more obvious somethings wrong. When he starts flapping and spinning, well it's really obvious.It's like the Tom Hanks movie "Big". The saving grace is that most the time he doesn't notice people or the comments, too much other stuff going on. If he notices someone staring he stares them down, a really mad stare. He doesn't like people looking at him, invading his world. Quit looking at me ! Mom he's looking at me !(he and his brother) Mom are you looking at me ? No Josh no looking going on here. All in all I'm sure demographics play a big part,that and some people are just uneducated in our "disabilities world". Thanks again for your blog !! :)

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  52. I used to think we hadn't had to deal with all the "mean" people because we were in the friendly South, but if you're in NY and you're not getting them either, I think the real answer is probably the severity. Our son is pretty severe (he actually has a genetic disorder, not Autism, but a lot of the behaviors are similar). He is at about a 6 - 10 month old level on most things, and he is 5 1/2 years old. We have never had a single rude comment, and have met lots of friendly people. I do think the fact that it's completely obvious that he has "issues" prevents most of the remarks - and of course the fact that he is stunningly cute! :-)

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  53. My family have hurt me often. They except my child but the older and bigger he get the less they have anything to do with him. I am often reminded your child,your problem. I have heard it all and expect to hear more in the years to come.
    I have met very understanding people, but I bet their happy it's me and not them.

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  54. My son is 13 and I have only rarely encountered a mean person. I have encountered quite a few rude people that stare. With children I can understand but IMHO there is on excuse for an adult to stare. I meet their stare with my icy "don't mess with him" stare. Not long ago we were at our fitness center where we swim often and my son and husband finished getting dressed before my daughter and I did. I wish I knew how to put a proper linky in someone else's blog but here is what happened.-----> http://4overyonder.blogspot.com/2012/12/thats-my-son.html

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  55. My kiddo is on the high functioning end of the spectrum. He is verbal, although his communication skills are poor. As he is high functioning people are usually very confused when he says something weid, comes to the womens restroom, or has a meltdown. At age 8 he is as big as my nephew who is 12 and a full blown meltdown where head banging, slapping himself, pinching himself, and various other things are happening in public we've gotten a few looks/comments. But we will continue to expose him to different situations. He needs to be exposed to different stimuli and the world needs awareness.

    Cheri

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  56. Hi when I look at my own family I definitely think that neural "functionality" is a big factor. I myself am HFA and next year I will be studying toward my PhD. I live and work in a seperate continent to my parents. If I have a meltdown, everybody stares no matter what I do. I cannot go out at night for this reason. I would get unmercifully bullied and so would my friends. The worst experience I had was when I was walking my dog. I started crying and screaming and was taken to the police station in case I was rabid (I teach English in China). My brother has severe, non-verbal autism. If he has a meltdown people are really understanding and helpful. At university the worst thing was when people forgot I was autistic and did their rainman impressions.

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  57. We take Buddy to Wal Mart to pick up my husband when his shift is over and get our groceries. We try to go late evening when there aren't so many people, but we still get them. Buddy is high functioning but the chaos of the grocery store and hordes of people can either cause and instant meltdown or coping mechanisms. One of his coping skills is that he recites the states and capitals. Walking through the freezer section one day, spouting off the states in ABC order (because, really, is there any other way the states can be arranged??) and a man we passed called out, "Look out for the WHACK JOB coming through the veggies!" Husband explained why he was doing it. Was his mumbling really that disturbing? He then told my husband that we should keep Buddy home and away from "normal people". Husband told the man that he should be kept away from people because "Close mindedness is far more contagious than Autism"!

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  58. I think it has a lot to do with age. When my son was younger I used to get a LOT of comments. Now that he is older and it is more obvious that he has Autism (he is 11), people have stopped with the discipline comments and seem to understand that there are issues. As he gets even older I would expect that people will become even better with acknowledging this fact. His condition is more obvious the older he gets as he is not changing or developing, so the gap between him and other children will become larger.

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  59. I love all the posts. I'm the father of a now 21 year old moderate autistic son. I'm 6'2" 245 lbs so I almost never hear comments, but do get stares. About 12 years ago we were at a dicks sporting goods tent sale. My son was in one of his Disney movie reciting moments, when a boy about 7 was watching my son. Now, I say this because my son can walk off at anytime so I'm always aware of what is going on around him. The boy now looks at his father, as if to ask what is that boy doing. Wow sounds like a great teaching opportunity huh? No, he bends down to his boy and points to my son and starts laughing so then his boy starts laughing. I felt my adrenaline rush, and will say it took everything I had in me not to hurt him in the most worst way. I did go up to him and say" it's called autism and it really isn't funny". He cowered his head and walked quickly from me. The thing I'm not proud of is that I followed him hoping he would say something stupid so I could put him on the ground. That's the only time I came close to losing it.

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  60. The rudest people I have come across have been family. My mom would say hurtful things before she accepted the diagnosis. My father - in - law and his wife are just jerks period. They say rude things to my son, to us and to others. They very much just see my son as a brat.

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  61. Our worst experiences have been with family and teachers....the family member comments on our parenting and the teacher feels he's rude and bratty. Sadly, you would think these people would try to be more patient and understanding because of who they are to us. Clearly they never tried to educate themselves. My son is 11 and fairly high functioning. He looks typical, but to hear him speak, you can tell he is delayed. He has few "filters" and speaks his mind, but we haven't had any strangers comment. Maybe I'm just good at ignoring them. We're too busy having as good a time as we can when we're out :) Our feelings are "screw em if they don't like us"

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  62. I love, love, LOOOOVE that you take him to see the Yankees play, especially being that he gets to go to the greatest stadium in all of baseball! Here's hoping that 2014 will be a better year for our boys. Got some great additions ESPECIALLY with the signing of Tanaka!!

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  63. People who are mean get the Autism card I carry in my wallet. It's very effective.

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  64. I've found that when I'm out with my son, who is higher functioning, I get rude comments (I've been told he needed a spanking, that he needed to shut up once in Chic Fil A, etc) when he's having a meltdown. When I'm with my daughter, who is lower functioning and severely effected, I never get comments. I can't ever recall getting a rude comment about her.

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  65. "Is it because it's kinda obvious from that Kyle has autism within seconds of seeing/ meeting him? Maybe it's harder for the kids who are more typical? Maybe when they have a meltdown it seems more shocking and out of place to the outside world. And they think it's a spoiled kid?"


    That's exactly the problem I face every day. 33 yrs old and when I slip down the spectrum and start acting like a 5 yr old...i get dirty looks and get yelled at...mostly by family members that should KNOW after 32 yrs.

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  66. Both of my boys have severe autism... They're almost 5 and 6... you would be surprised how many looks we get. My son was freaking out and a can of paint fell in the store, and we had bright blue paint EVERYWHERE.... and some guy had the nerve to laugh. Or we took them to the aquarium and this woman just looked at me with the dirtiest, meanest stare I've ever seen. If it wasn't for the fact that I'm 34 weeks pregnant, and trying to get them back onto the elevator took everything I had... I probably would have went over to ask her what her problem was.
    Either way.... Both of our kids wear diapers, neither of them talk... they both still use sippy cups (one more bottle looking than what the other uses)... You would think if you see and hear a kid melting down, and they're not telling the parents "But I want chocolate" or the toy or whatever.... they sound... well... like a baby or 1 year old... they would say - you know what... there's something a little off there... they must not be "normal", and not glare.
    Honestly, I'm happy for you guys... I think it would be pretty amazing if more people were more understanding... And I got it in the small town we lived in, in PA.... but in a large city in Texas? I just figured things would be different.

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  67. My son is now 5 and has moderate autism, mostly non-verbal, very energetic and a super stimmer! He also seems to behave surprisingly BETTER out in public then at home, go figure! There's the occasional shriek or scream (usually out of excitement) strangers seem to ignore it (or I'm ignoring them) , we've had a grand total of 2 meltdowns and were able to leave promptly so i cant say i've ever had any public reactions to this. I have had a few stares at best. I must say W-O-W when it comes to family! When our son was first diagnosed at 1-1/2 we immediately sought out any info on autism we could get, one of the first things we noted was a kind of pre-warning that family's tend to struggle with this. My husband (whom has a very tight knit family) and myself thought 'no way!' never imagined family of all people would have the issues. I still love all of my family in-laws and all- to death, but unfortunately i can't disagree :'( . i have a father in law that likes to say my son is 'pitching a fit' ' "WE" need to get him talking' he cringes and winces at my son when he squeals and says it's 'blood curdling', when he ask (if he ask) about our son it's "is he talking yet?" He hints around to 'what causes autism' as though to place blame on us. That is probably the MOST hurtful. Anyways you get the point, Then my parents are very -aloof, I've explained autism in great detail and how it sort of requires me to stay at home for his benefit. To be honest it just doesn't seem to click. After their last visit i had secretly hoped seeing him in person they would realize what i was dealing with here, only to get a phone call on their leaving town to tell me the dollar store is hiring. My mom ask almost every-time i speak with her 'is he potty trained yet" i find myself lying and claiming my son is doing better then he is just to avoid judgment. (yet she didn't have my NT brother potty trained until the age of 12!) Lastly i get the "rain man" references from her about how my son really is probably a genius, i know she means well but dosent see how it builds an expectation for my son that he might not live up to one day! eh.. i guess you think when your family see's you go though this you kind of EXPECT support, i think it hurts family that my son doesn't buff their ego's as most typical grandchildren do "i love my papa" kind of stuff, i try to keep in mind that autism (especially non-verbal) IS intimidating people just don't know what to say to someone who likely wont respond back. It saddens me that the general consensus is this very story strangers seem to accept it easier then family, of course family has emotion invested, but surely relatives of autism really really need to educate themselves i know half of the comments family makes are well intended, however it still hurts in reality. -

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  68. So happy you don't encounter those people. We don't need it. We all have enough on our plates.

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  69. I could not believe this post! Yes, it is the high functioning kids and their parents who get the comments. People think because they look and act normal, that they are. I have had quite a few people try to come up and "teach" my child the "right way" to act. Then I turn into a "Mean person"

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  70. When my children were younger they would sometimes stare and wonder what was going on. I would explain that they were having a bad day (not knowing if some were high functioning or just brats). They would just say "I get that" and move on. I remember one day out shopping a dad was sitting on the floor with his son and was holding him while he tried to calm down - people were staring and of course making comments. I just said hang in there and screw the them. He came up to me at the register and said thanks. I guess he just needed someone to say they get it. My children do not have autism but I have spent years working with this population and their families. I love your posts and hope you do not meet those mean people.

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  71. In 13 years I've only had someone mock my son ONE time in public that I know of. I blogged about it that night. Normally my blog post get 1000 views at most. This one had 15K views in a week then was picked up by several online magazines and shared thousands of times from each of those. I think that there may be few mean people but the stories of mean people are passed around way more than the stories about all the wonderful people we have in our lives. Why do we all love a train wreck? - I am Quirks and Chaos on Facebook

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