I admit, sometimes I do feel like screaming to the onlookers who roll their judgmental eyes and make inappropriate comments -- "Mind your business!" But obviously that is not very productive. Instead, I've created "autism awareness" cards that succinctly explain autism. I calmly smile and hand onlookers cards without having to verbally respond.
-- Carole Finnin-Omoigui, Bronx, N.Y.
I have a grandson who is autistic. My daughter went to the mall one day and while getting Ben back into the carseat he had a tantrum. A lady passing by accused her of beating her son. The almost sent her over the edge!
-- ANNHONEYWELL
Whenever my son starts to get upset and we are out at a school function or a restaurant, we always try to get him to focus on our eyes. My older son Nickolas is really good at getting Joshua to relax and have a good time. Recently we were at the mall and we didn't go into the stores in the proper "Joshua" order and he started to cry and pull away and get upset. Nickolas noticed that people were starting to stare so he went to him and pointed at his nose and said "Come on Bubba, let's go look at video games." Joshua looked right at Nick's eyes, wiped his tears, took his brothers hand and off they went. It took us a long time to realize that this worked, but as soon as Josh sees that we are not upset, he is not upset. We also have found that lightly massaging his cheek or back calms him as well.
-- pholsinger
I am a single mother of four. My two boys are autistic, one is high-functioning and the other is mild with OCD. My coping mechanism is to just ignore and block other people who stare. My focus is on my sons.
-- Sonia Payne
My twin 11-year-old granddaughters are autistic, one more pervasive and one Aspergers. Jessica has experienced many meltdowns in public, and reactions are just as many. Often strangers will ask if I need help, and just as often they will make critical comments or try to talk directly to her and tell her that it's no way to behave. I have found the best comment I can make is “Jessica is autistic; please keep her in your prayers.”
-- Judy Kribley, Schaumburg, IL
I look politely but directly at the interested observer and inform them, "My son has autism." Depending on their reaction, I may also add, "What's the reason for YOUR behavior?"
-- BMingola
My son will often collapse on the ground screaming if he doesn't get his way. A sweets store, where he wants to put his hands in all the candy receptacles, is often the trigger. We make sure that the store owner knows that he is autistic. So far, we haven't had them call the police, but we try to avoid malls when we are out with him. Once in a department store, a sweet, elderly woman tried to talk to him, probably concerned he was being abducted. We kindly explained to her that he was disabled, which she accepted. It helps if you aren't freaking out yourself, and it's important that you aren't hostage to your child's autistic behaviors. It is tough, but the only way to socialize him or her, so he can go about in public as an adult without obstructionist, inappropriate behavior.
-- allthethingsyouare
My daughter Regan Chambers is five and was diagnosed with autism about 2-1/2 yrs. ago. When it comes to the public and Regan, in the beginning I just didn't want to go anywhere with her. The looks from people at church, grocery stores, even the park, just broke my heart. But I soon realized that if I don't make people aware of autism, who will? So, everywhere we go, we make sure to tell people that she is autistic and they always ask questions and at least I know they know more about autism than they did when they woke up. I just want people to think before they give the dirty looks or make the little comments, because you just never know.
-- Rebecca Chambers
Generally, people fall into one of three groups. Group one is people who get it and don't miss a beat. Group two is people who recognize it and want to, but don't quite get it yet. And Group three is people who don't get it and probably never will. What is “get it?” Call it good manners, class, respect, openness -- these people look my daughter in the eye, smile, and go with the flow. Those who get it want to connect with her regardless of any awkwardness. Anyone who takes the time to get to know my daughter is rewarded with unconditional friendship, laughter, creativity, and a new appreciation of how people should be treated regardless of disability, race, culture, poverty.
-- Tom Brock, San Ramon, Calif.
My son is 7 and highly functional. We take him everywhere we go. His older sister (who is 21) spoils him rotten. And if anyone says anything she holds her head up high and tells them that he is autistic and he is okay, maybe the problem lies with you.
-- Lora Jessee Ferguson
I am the single mom of a six-year-old autistic son. I want him to have the benefit of doing all the things that "typical" children do, so we frequently go to the local museums. We talk about "the rules" when we are on the way. That lays down the guidelines and helps him to focus on what is and is not acceptable behavior. Sometimes we have great success and other times ... I think the thing that bothers me most is the parents who allow their children to stare and finger-point. When my son and I are out and about and he sees another child acting out or crying, I always tell him, “That little guy/gal is having a bad day. We have bad days sometimes too and it is not polite to stare." Just recently, he approached another child who was crying and said," Hey little guy, it's okay. Just calm down. Everything will be fine." My heart filled with joy.
-- Katherine Pierce
My three-year-old son, Thomas, is autistic. The need for autism awareness is absolutely necessary. Our experience in a restaurant was the turning point in our family's lives not to become a “prisoner” of autism. We were in a restaurant in Pennsylvania, which we thought was a great restaurant experience for Thomas. And then comes this woman who actually had the audacity to come up to our corner table. My mother-in-law rose and stated as loud as can be, “My grandson is autistic”. What came out of the woman's mouth next was out of this world. She stated “I don't care!” We were floored. It was at that time I said in my head, I will never let someone get away with that again. I am no longer afraid of temper tantrums. This is my child and I am so proud of him. Who cares what other people think. God gave me Thomas because I am strong and we as a family will not let the ignorance of others get in our way.
-- Nancy Dewey
Years ago when my son was about 5 and severely behavioral, we wanted him to enjoy the circus. So against our gut feeling, my sister and I packed him up and went to the event. Approximately a half-hour hour into the circus (a lifetime to us who usually buys the tickets and has to leave in the first 15 minutes), my son began to exhibit behaviors. Unfortunately I could not carry him up the steep steps and we were too far down to let him walk [up to the exit]. A stranger who was sitting behind us saw me signing to my son and realized we were in distress. He picked him up, put him over his shoulder and got us to the top where it was quiet. I will never be able to repay him for his kindness and just gave him a hug. Over the years you learn to deal with ignorance and unfortunately, with the odds becoming even higher that many of "those people" will be touched with autism themselves, they will learn the unfortunate way how to have a heart for a stranger like the man from the circus. Thanks for letting me share!
-- Jani Sblendorio
Instead of having to explain to people that my seven-year-old is autistic I now have him wear a shirt or t-shirt that says "Be patient with me, I have autism" or "I have autism, what's your excuse". Words say it all!
-- Mary
Two days before Mother's Day, my daughter had an orthodontist appointment. Off went me and the four kids (two are neuro-typical, one has Asperger's, the other autism). In we march, things are looking good, it isn't too busy, and we find seats. But my oldest son is having some trouble finding a "good place to sit" and plops down in what apparently was someone else's seat. I quickly asked him to get up, when the former owner grabbed her stuff, walked off in a huff and loudly announced "Some people just don't know how to control their children". Could she be talking about me? My children were quiet; there were no tantrums, no stimming, nothing. Here I was congratulating myself on a job well done, when all along I was a horrible mother with monster children who cannot control themselves at all. Wasn't it nice of this woman who had obviously given birth to the most perfectly behaved children in the world to point this out to me right before Mother's Day? My face was burning and I was near to tears but I calmly said to no one in particular "I have two children with autism. I am doing the best I can. I am sorry if they have offended you in anyway," to which her teenage son turned to her and quietly said "Nice going Mom". I now carry information cards with me to hand to people who feel the need to comment on my mothering skills. But that one sentence ruined my Mother's Day and stuck with me for a long time.
-- Nicole Jette, North Attleboro, Mass.
Frankly, I am too busy to notice other's reactions. I have twin four-year-old boys who both have autism. If something happens, I am completely focused on them, naturally. Most of the time, the boys are simply "stimming" and that is what gets attention, mainly smiles because they think they are just happy boys.
-- Jennifer, Marietta, Ga.
Last summer, I took my kids to the kiddy pool at our local park. When we first arrived everything seemed fine, until my seven-year old (who was diagnosed with autism when he was three) started making his usual noises and jumping on his toes, when I noticed other parents started pulling their children out of the pool. I am assuming it was because they were not sure if my son was going to harm their children. My first reaction was anger. I was angry at these parents for judging my son without them even asking if my son had special needs. Then I calmed down and slowly started to walk around in the pool with my son so that they could see that he too was a child that just wanted to play, letting them know that my son was not here to harm anyone, but simply has a social disorder called autism. I also told them how hard it is for parents of autistic children to do all of the things that normal children can do. Between our limited activities and people staring at us when we are in public, it is very difficult for parents of autistic children to go out in public without facing some sort of discrimination.
-- Nicole
We always go out assuming there will be a meltdown and getting past caring what other people think is a personal battle that every mother with a disruptive child has to face. For me, I had to decide what was more important, because the more embarrassed I got, the worse the tantrum got. I try to remove her from an "audience" setting and get her to take deep breaths. Now she wears ear muffs (the kind for shooting practice) and sunglasses. Since she has the ear muffs on, most people don't offer advice and there are fewer meltdowns due to getting over stimulated. But, like I said, realizing that your child needs something and fulfilling that need despite the fact that it appears that you might be spoiling your child is something that is very personal and comes with confidence in your parenting skills. Good Luck.
-- Kristi
More people than not have been fairly polite but, when I get that one person who thinks they are better than thou, I say, "He is still learning." Then they usually get the picture. I try not to feel as though I always have to justify my son's behaviors. As a whole, I feel as though our society is much more accepting of those with "disabilities" than in the last few years, and that alone is very comforting.
-- Julie Sekerak, North Ridgeville, Ohio
My son and I were eating at a local restaurant when my son thought it would be a good time to tell the world that the lady leaving the bathroom pooped and he carried on forever. The lady sitting next to us looked at me and said "My grandson speaks so much better and would never act like that," then she tried to carry on a conversation with my son who ignored her she stated, "Why will he not talk to me?" My reply was, "Did you ever think that maybe something is wrong with you?
-- Cindy J Brooks
My 13-year-old son was diagnosed when he was 8. I used to think when we were in public that if he would look a little more disabled people would stop looking at him as if he were a spoiled brat and me as if I were this horrific mother. Over the years I have become much more knowledgeable and tolerant of the ignorance around me. On rough days I just ignore them, as I am usually getting my son out of the venue we are in and heading for the safety and security of our vehicle or home. On days that are not so rough, I ask them if they have any questions about autism. Most of the time I get little embarrassing remarks and sometimes responses like “Oh”. I think the public has gotten better over the past five years, but still not good enough.
-- Dawn in Northeast Wisconsin
Thanks to Autism Speaks and the Wright family people are aware of autism. A few years ago people would look and not understand. Now I find we get soft smiles and compassion. Thank you.
-- The Hamilton Family
My daughter, Alexis Jayde, is autistic. She is 3-1/2 years old, but a tall girl who looks more like five or six. I think people assume she is a spoiled brat when she has a melt down in public. I have learned to be very careful before I judge people. The worst is when her meltdowns happen while trying to put her in her car seat. She is very strong, mind and body, and I get intense looks when they see me fighting that battle. I just try to keep my cool, and if the people are close enough I tell them she is autistic.
-- Jayme Sabin, Laurinburg, N.C.
I have a five-year-old grandson who has autism. He is so lovable that most people just adore him. If anyone were to say anything out of line, I'm prepared to tell them that but by the grace of God it could have been them or their child/grandchild. A person would have to be totally ignorant or immature to make fun of anyone's physical, mental, emotional [attributes], ethnicity, or anything that we have little to no control of as to who we are.
-- Sue Billings
I am the mother of a 14-year-old with autism. Over the years we have had many incidents, but my son's behavior is much better now, though still odd. I feel that it is unproductive to call attention to other people's bad behavior in response to my son's, so when I notice someone staring or frowning as they look at my son, I will always say, "Oh, I'm sorry, I hope he is not disturbing you. You see, he is autistic, and he is still learning to ...talk, wait in line, act appropriately, etc. (whatever the issue might be).” Whenever I face it head on like that and acknowledge that he might be scaring someone or making them feel uncomfortable because they do not understand his behavior, always the person or persons involved have acted graciously, and even told me how well they think he is doing, and started a discussion asking questions about autism or the best way to interact with him etc. I have never had anyone act ugly to me or him after I responded in this way. I just assume that they do not know about autism and do not understand, and make it my business to help them understand and have compassion. There is enough stress involved with raising a child with autism I think, without adding a lot of anger as well. And if after approaching it this way, someone would happen to be rude, well, I would just assume they have a problem, and need my prayers and compassion a lot more than I need theirs.
-- Gina Carter
I have a child with Asperger's and to help her cope with a meltdown I am able to have her blow slowly on my finger as if she were blowing out a candle five or six times to deter her mind from what is bothering her. It works, because one can't scream and blow at the same time. Then, she has to talk, not cry, about whatever is bothering her. Once we get what is bothering out on the table, we are able to manage a strategy and fix the problems.
-- Hol, Michigan
My son Jake's newest obsession is cars. He knows every make and model of every car ever made. Whenever we go out in public he asks every one he sees, "What kind of car do you drive"? Most people are cool about it and answer him. Mostly people think he is cute and start to speak to him. Some people are rude or think he is strange. To these people I say, "My son is autistic and he is obsessed with cars. We are taking a survey of what everyone here is driving." That usually puts them in their place and then they laugh and answer him. I guess that is one way to spread autism awareness.
-- Joy Ryan
I learned much from my first son with autism, so I thought I was prepared when I diagnosed my second son with autism. However, the second time around was more severe so I had to learn more methods and adapt. What helped for me: Bring a tape-recorder with headphones and favorite music to listen to in a food store -- it blocks out the other unpleasant noises to my son and focuses him on something soothing to him, yet allowed him to slowly get used to the store environment. Bring snacks like pretzels and juice just in case. It buys more time for you in the store. Start off with a short trip to the store and gradually increase the time there. It usually works best to go the same store so the routine is not upset. Later on he was kept busy looking at all the new items and displays at a different store when he was more used to the idea of food shopping
For restaurants (I did take out for ten years because it took that long to work on it) but portable DVDs with headphones and a new DVD (it is not a bribe but a coping mechanism for the adult) allowed me enough peace/time to eat hot food. Let the manager of the restaurant know and in advance ask for a table in a quiet area, away from other patrons if possible, and go early to avoid the crowds. If you can bring an extra person so you can take turns if necessary going outside to take a walk while the others finish dinner. When there is a meltdown, as upsetting as it is to get those looks, stares, comments, I found that educating them is best. The more people who understand autism, the better it will be for all our children, and for the respect and tolerance of all other children with disabilities. I have told people who stare that my son has autism and he is trying his best. Please understand, he can't communicate like you and I and that it very frustrating. It's like being dropped onto another planet, not understanding the customs, language, and yet being expected to function. Usually, they are nicer and have something to think about
For airports, insist on going through an express line for security and let you hold your child's hand while going through those security detection domes. When security insisted I go through separately (and I warned them) but they didn't listen, my son proceeded to walk through banging on the sensitive walls, setting off the lights, alarms etc and starting to run and I ran through anyway to get him. Sometimes others have to learn the hard way too. Next time, we sailed right through security! Waiting in the airport was more difficult than anything else. Bring snacks, toys, portable games, DVD players, and a surprise to keep him busy. P.S. the plane ride was uneventful. He loved it and made less noise than the screaming babies on the flight.
-- Catherine Abbott
My son, CJ is 7 years old. He was diagnosed with autism when he was only 18 months old. He is currently non-verbal. He acts out in public sometimes. It was really hard when he was younger. Often times I just ignore people who make comments or who just stand there and stare. It does bother me to have him go through people's ignorance about autism. His hearing works just fine, and when he hears people talking about him, it makes him even more aggressive. I'm constantly praying for him.
-- Gina Cyrus Palmer
My oldest son has autism. He's 17 years old, so we have been dealing with the “public” for some time. Mostly, I ignore people with my head held high. Sometimes people force an interaction, at which point I will ask them, “Do you think I want this to happen?” When he was little and people would interfere, we would tell them, “We're his parents, we got it.” Drew is now old enough that his unusual behavior is obviously due to “something” and not just “bad parenting.” So when he starts talking to himself or pacing back and forth we will tell him to stop, he's scaring the “straights.” That has a two-fold effect: Drew is aware of what his doing and usually stops and the people around us are made aware of their reactions. On occasion people will ask us if he's autistic and what that means, at which point we will stop and explain it to them.
-- Teresa Shafer
Public awareness has greatly increased from 10 years ago. When my son used to misbehave, I would apologize to those that were close for his behavior, which [I'd say] was due to his autism. I would then have to try to explain to them what autism was. Now I simply look them in the eye and tell him that he has autism. The typical response it that they know someone else with ASD and then offer help. On one of my last visits to Wal-Mart, the check-out lady made sure that all of my items were in my cart, while another lady stood with my son while he satisfied his sensory needs on the squishy pet toys at the checkout aisle, and I swiped my card simply because it is the fastest method of payment. I have also found that if I can keep my son calm, his autism may not even be mentioned. Tape gum, gummy worms, Play-dough and squishy toys are great calming tools.
--Holly Broach, Rockvale, TN
As a grandmother of a 9-year-old high-functioning ASD boy, I often provide respite for his family. I'd have to say that I've seen lots of disapproving looks if Alec loses it in public. When I catch it, I quietly walk close to them and say, “You're looking at the face of autism.” Another tool I use is to slip them a business-sized card that gives an explanation of autism and its behaviors.
-- Diane Nelson MA
I designed a t-shirt that says, “I have autism…be nice to my mom”. I put it on him whenever we go out. It has been great. I get a lot of “ah hah” looks now instead of the “stink eye”, as my daughter calls it.
-- Cheryl Smith
Luckily for my wife and me, we live in a community that is rich in intelligent people. Up until the formal diagnosis of Asperger's, as well as afterwards, when we would be in the middle of dealing with a crisis, one of these very bright people would offer the most awesome insight to our situation: “You need to wear his butt out; that's how you put a stop to that sort of thing.” This, of course, left me feeling silly for spending all that money on medication and doctor bills to address something that a blue-collar worker could fix for me in mere minutes.
-- David B Cockrell
My five year old has autism. I have often had to apologize for his behavior, but only if he has injured anyone or broken anything. Although these are rare nowadays, he does throw fits, and scream and bite. It generates a lot of stares and comments. One lady even said I should call Nanny 911. I said loudly enough so everyone else who may have been observing my son could hear, “Please excuse me everybody, my son is having an autism moment.” Immediately I get nods of understanding and people go about their business.
-- Jamie Knopik St Paul MN
I have learned to ignore most individuals and their comments. Occasionally I will offer an explanation and some people are receptive while others offer a blank stare and say how sorry they are. The best item that I have come across that helps immensely is a t-shirt I have my son wear whenever we go out that has printed across the back of the shirt, "I have autism. Please be patient.” There are many different ways to handle situations and parents must sort out what works best for their family. I have found people are much more compassionate when they have the knowledge of what is happening.
-- Anne Bready, Jupiter, Fla.
Last June I flew to Texas with my baby and it was a long ride and we had to switch flights. On the first one going he was crying and uncomfortable, so this man yelled out "Shut that kid up." I got so angry, I yelled back: "I will. Then you can meet me outside when the plane lands so I can slap you in the face." I am not saying my response was correct, but people do not understand the frustration a parent has to go through. Thank God on the way back from Texas he had a better flight and the attendants also were excellent and offered every bit of help. Some people are good some are not shame on them.
We can decide to be judgmental and critical of each other or we can decide to be kinder, gentler, and more caring with each other. I once “hit the wall” at our local supermarket. My husband had been deployed with his National Guard unit for about six months (with six more to go). I was shopping with Tommy, on the way home from school, so he was tired, whining, sobbing and screaming (just like any “normal” overly-tired child). I had about 20 items in my cart, and the cashier at the “15 Items or Less” line – that was empty – took pity on me. She motioned for me to come over there. No sooner did I put the first item on the counter, while holding my screaming child on my hip, than someone got in line behind me, and started to scream in my other ear about how people like me shouldn't be allowed to break the rules, and “Why didn't I get my bratty kid under control, anyway?” Screaming child in one ear. Screaming meddler in the other. Involuntarily single parent mom in the middle, hitting total overload. I left my cart standing there, ran from the store, and collapsed on a bench outside, holding my screaming child while I sobbed. My life felt like it was falling apart and I felt very alone. But a couple of minutes later, a lovely older woman came out of the store and handed me two bags. She said, "Dear, please don't let the unkindness of a few inconsiderate people upset you so." I looked in the bags and there were the items I had selected. She wouldn't let me pay her for them, and she got one of the bag boys to help me carry them to my car. She said to me "Just help someone else the next time." So I do. That wonderful woman was an angel that day. She didn't know that I was a military spouse. She didn't know that my child was autistic. She didn't know that I was recovering from eye surgery or anything else about my life. She just saw someone who needed a helping hand, so she held out hers.
-- Edwinna McHale
Our son Stephen is 6 and has autism. One evening last fall, we went to a high school soccer game at my husband's alma mater. Afterward, the alumni committee was having a hospitality reception in the school cafeteria. We sat down at a table to enjoy some snacks and soft drinks and another gentleman with his two children sat down and joined us. His children were about the same age as ours. Stephen repeatedly asked the other little boy what his name was. It annoyed the other boy and he finally asked his father, "What's wrong with that kid?" I politely responded that Stephen had autism. "It means that his brain and mind work differently than yours and mine and if affects how he relates to people. His asking you your name over and over again is his way of being friendly to you." The little boy did not seem to understand and looked at his father. His father looked at his son and said, "Son, what the lady is trying to say is that this little guy is brain damaged." I honestly didn't have a response for that!
-- Susan Cole, Saint Charles, Mo.