Dealing With Other People's Reactions

As if dealing with a special needs child wasn't enough, you'll often find yourself having to cope with others reacting badly to your child.  We've had any number of experiences ranging from dirty looks and meant-to-be-overheard comments to being chewed out in a foreign language to people attempting to physically discipline our child.  Luckily, it's not an everyday occurrence, but it is something that you need to mentally prepare for.

There are no obvious signs that let people know that your child has autism.  To those who aren't familiar with the condition, it's hard to tell if a child is running around and around the room shrieking at the top of his lungs has autism or an indifferent caregiver.  Unfortunately, people tend to assume the latter.  It’s not fair, but in our society, we’re much more accepting of physical handicaps than mental ones.  If someone is physically handicapped, we make efforts not to exclude them and we don’t expect them to function like a non-handicapped person.  We try to create access for them. But there is still an expectation that people with mental handicaps should be able to act just like everyone else.  We don't tend to assume that the guy behind the counter who won't look us in the eye has autism. At best, we assume he's shy.  At worse, we assume he's a jerk.

You'll have to decide for yourself how much you want to tell people.  You don’t owe anyone an explanation for your parenting choices but it can be difficult to brush aside other’s judgments.  I've heard of parents who had t-shirts made up that said "Autistic child: handle with care" or "I'm not a bad parent, he's autistic."  Other parents make up cards that cover the basic facts which can be handed out.  Some are able to just ignore the unpleasant comments and looks and continue about their day.  And there are others who find it so difficult that they stop going out entirely.  I’ve been in situations where I felt so horribly judged that I just wanted to run away and hide.  One woman screamed at me for over five minutes in Chinese (I’m guessing since I don’t actually speak the language) after my son pushed her child.  I tried over and over to tell her that I couldn’t understand what she was saying and that I was sorry but nothing I said or did made any difference.  Ironically, both children got over it well before their parents did and were happily playing again.  There are parents who have talked about having a deep sense of shame that their child was acting out and drawing attention.  It’s sad but inevitable: there are going to be times when you’re out in public and your child will have a meltdown or get stuck in a ritual.  Taking a little time to think about how you want to handle it can make the actual event less traumatic for you and your child.  You know yourself and how comfortable you are with ignoring negative reactions from others.

Unasked For Comments:

It’s one thing to ignore the evil eye and disapproving stares.  It’s another to ignore those who make comments directly to you.  There will always be those who think that you're entitled to their unasked-for advice.  Usually, I try to educate them a little (it's also useful in getting them to be quiet and leave you and your child alone).  My son loves to sing and often is belting out his favourite tunes wherever we go.  I've had people, mostly of the little old lady variety, tell him or me that children should be seen and not heard.  Explaining that he has autism and that this is a way of soothing himself in an unfamiliar environment usually results in a hasty apology and the person backing off.  Sometimes it ends with an even more judgmental comment and me biting my tongue.  For those of you who are a little more daring or a little less caring about public opinion, you can try my husband's favourite response:  "I'm sorry, but you've obviously mistaken me for someone who gives a crap about your opinion."  This usually results in the person storming off in a huff but can be very satisfying.

Aggressive responses:

            It actually amazes me how many people respond with aggression when their social cues are not picked up on.  It seems to be more unforgivable than being openly rude.  We've all seen how quickly the group can move to exclude and ostracize someone who isn't quite "normal."  This is the major handicap that people with autism face when dealing with the public, in my opinion.  When someone talks to a child and the child ignores them, continuing to stare at a display case, often the reaction is very negative. I’ve had people insult my son, telling him and me that he is rude or bad or stupid.  Others make jokes that aren’t really jokes.  Some walk away in a huff.  Some won’t take no for an answer and insist on getting in the child’s face, demanding a response to their greeting.  Not everyone is inappropriate, but it happens far more often than you might think.  Again, it’s important to decide how you want to handle it before you’re stuck in the middle of a situation.

            The worst cases are those who get physical.  I’ve taken some self-defense training with a local karate instructor so that I have the tools to deal with those who attempt to physically discipline my son.  It’s come in useful on more than one occasion.  There are several martial arts disciplines that can teach you techniques on how to block someone from striking, remove a grip and restrain someone, all without actually hurting the other person. 

I've had an adult push my son because he wasn't waiting his turn in line behind her.  He wasn't trying to be aggressive with her, he was just trying to get past her on the playstructure where she was sitting.  It's shocking and very upsetting but it happens and it helps if you can be prepared with a plan of what to do, because it can be very difficult in the moment.  In this case, I explained that he had autism and was non-verbal and didn't understand what she was trying to tell him.  Her response was that I shouldn't let him out with normal children.  I bit my tongue (hard!) and walked away.  There are people out there who aren’t just ignorant, they are deliberately blind and will fight anyone who tries to enlighten them.  It’s not your job to make sure that everyone reacts with tolerance.  It’s your job to protect your child.

In my opinion, it is never okay for an adult to physically discipline a child who is not theirs.  (And I’m not big on physically disciplining a child who is yours, either, just for the record.)  It doesn't matter if the child is autistic or not.  That being said, if your child is habitually violent, then you do have to consider the safety of the public.  I'm not talking about occasional tantrum but regular and predictable violence.  You aren't just your child's protector, you are also the protector of the public from your child.  It's a difficult choice to make and you'll have to weigh each situation individually. 

We had a very difficult situation one time with our eldest son.  He was overexcited and running around while I spoke with someone.  I wasn't paying attention as closely as I should and he knocked down a little girl.  Her father picked my son up and began to shout at him, demanding to know where his parents were.  My son was screaming, absolutely terrified.  I immediately went up and got the father to release my son, turning him over to his grandfather who was also there.  I then told the father in no uncertain terms that he was never to manhandle my son again.  The father began to shout at me, but I held my ground, waiting to see what would happen next.  After a few seconds, I could see him realize what he had done.  He was ashamed but it doesn’t change the fact that he lost his temper.

In my opinion, the father's behaviour was totally unacceptable.  However, I was not doing my job as a parent.  I knew that my son was overexcited and when that happens, he doesn't pay close attention to where he's going.  Either I or his grandfather should have been closer to him or taken steps to calm him down.  I don't consider the incident to be my fault, but it was a warning that I wasn't paying attention to him as I should have.  It's part of what we have to do as parents of children with autism and it may be unfair, but it is necessary.  You'll constantly have to weigh off the benefits of having your child participate versus the amount of work required to make it successful.  Generally, my son is more likely to injure himself when frustrated than hurt someone else.  This can be disturbing to onlookers, but doesn't put them in danger.  You'll have to make your own decisions on what's acceptable.

I don’t tell you all of this to frighten you or because I’m a bitter, cynical person who believes the worst in people.  The vast majority of people that I’ve encountered and who you will encounter are good people.  They may not always know what to do, but they genuinely want to help.  But there is a small minority who are having bad days, are bullies or who believe it is their right to discipline any child they encounter.  Because our children are more likely to be “misbehaving” (a term I use very loosely), they are more likely to be targeted.  Being ready to handle that is no different from putting on a seat belt in a car in case of a crash.  Most of the time, you don’t need it but when you do, you’ll be grateful.

Special Treatment:

I've heard stories of difficulties people have had with churches, schools, plays, concerts, etc.  In some cases, the child was overexcited or overstimulated and became disruptive.  In other cases, the public or staff reacted badly, creating a negative experience.  But sometimes it was the parents who made a bad call.  It might be important for you to have your child attend church or temple (or whatever spiritual gathering you prefer).  The experience can be a great opportunity to practice social skills and participate in family life.  But do they need to sit in the middle of a crowd?  Is it too great an expectation that they will sit still for over an hour?  In one case, I recall reading a post by a parent who was incensed that her church had offered to let her family sit up in the choir loft so that her child with autism could get up and move around without disturbing the other parishioners.  My immediate reaction was, what's wrong with the choir loft?  I'll admit that I certainly don't know all the details, but that sounds to me like a group that was willing to work with the family and meet the child's needs.  Further posts suggested that the woman didn't want her child singled out, which made me feel badly for the child in question because it sounded to me like the mother was ashamed of her child's diagnosis.  Again, I’ll admit I’m making a judgment without knowing all the circumstances but it allows me to bring up an important point.

It's difficult getting used to the "special needs" label that comes with autism.  But ask yourself if you're more upset at the idea of your child having special requirements or the idea of other people realizing that your child isn't perfect?  We all want to believe that our child is above average in every significant way.  But holding on to that ideal can end up costing your child.  By denying them the supports that they need to succeed, we set them up for failure.  It's harsh, but ask yourself what's more important: your feelings or your child's?  Putting aside your own feelings can be difficult (and is one of the reasons that I recommend getting a good support system in place for parents), but it's one of the best gifts you can give your child.  Focusing on the reality of the situation is much more helpful than dwelling on what you wish it was.

There isn’t anything to be ashamed of in needing help.  A child with dyslexia may need verbal instructions rather than written ones.  Someone in a wheelchair needs a ramp rather than being able to run up the stairs.  Your child will likely need help and accommodation to reach their goals and it’s okay to ask for it.  My son finds it very hard to sit still for extended periods, so he gets up and moves around at the back of the class to avoid disturbing people.  If the teacher tried to make him sit still, he’d be so distracted by that, he wouldn’t have any chance at getting to learn.

Having said all that, it is also important not to underestimate your child.  Sometimes parents can go the other direction and get overprotective, protecting the child from failure by preventing them from trying.  That's not helpful in the long term either.  You'll never know what your child is capable of if you never let them try.  My children have both surprised me by what they can do when I’m busy with something else.  My son asks me to pour his milk (and I do, because I’m his mom).  But one day I was really sick and couldn’t get up and he calmly went to the cupboard and got himself a cup then went to the fridge and got the milk out and poured it himself.  Your child will surprise you, too.  Give them a chance to show you what they can do.

Trust yourself and your knowledge of your child.  Forget public impressions and work on helping them to be successful in their efforts.


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Page Descriptions

Dealing with Diagnosis: Parents talks about the emotional impact of diagnosis. This is a major life-changing event which can leave people feeling isolated, angry and hopeless. You’re not alone in this.

Dealing with Diagnosis: Friends and Family offers suggestions to the extended family and friends of newly diagnosed families. We all want to help and make things better but sometimes the best-intentioned gestures can end up hurting.

Dealing with Other People's Reactions warns of some of the less than positive responses you can expect and talks about the stigma of accepting the "special needs" label.

The Autism World is an explanation of how people with autism experience the world around them. The ability to guess what your child is experiencing is one of the best tools you can have in helping and teaching them.

Tips and Tricks is a collection of suggestions and ideas contributed by parents. I’m always looking for more suggestions to share. Contact me with your ideas.

Choosing Therapies and Treatment isn’t about specific types of treatment. Instead it’s about what you should be looking for in a therapist or treatment expert. Every child with autism is unique and there’s no universal treatment.

Changing Challenging Behaviours is a basic overview of the Applied Behaviour Analysis system. While I recognize that not every child works best with the intense behaviour treatment based on ABA, the system of figuring out what is behind challenging behaviours is an effective way to understand what your child is trying to tell you. Understanding is the first step to trying to change the problem.

Communication offers ideas on how you can help your child with autism to communicate. Without an ability to tell you what he or she wants, frustration quickly leads to behaviour problems.

Referrals for Families are options for families with special needs to enjoy some of the ordinary experiences in life. It lists examples of non-therapy professionals and businesses who are willing and able to adapt to autistic children.

Finding Help: There are three sections, pre-diagnosis, getting a diagnosis and post-diagnosis. It's my attempt to give you a checklist of options.

Helpful Books: A list of books that I've found to be useful, in the order I discovered them.

My Blog is where I share new information, what's working (and not) for our family. Posted daily (mostly).