Autism Etiquette

By Nandini Minocha

rishabh.JPGA very odd title for an article isn’t it? I guess it’s not something most people think about. Unfortunately it is something that affects me and my life profoundly.
As a parent of an autistic child, I am often faced with situations where well meaning people around me flounder when they encounter certain types of behavior peculiar to the special needs world. So here is my little primer for all you wonderful people out there who would like to approach my world with sensitivity and kindness.

First let me put this in context. Autism itself is likely to affect 1 in 150 children today so almost all of us are either affected personally or come into contact with special needs kids through friends or family. Virtually all classes in public schools have one or more children who are challenged in some way. The aim of the educational system in California is to integrate special needs children as much as possible with regular kids to make them familiar with their day to day environment.

All of us strive for acceptance from our peers at some level and children with special needs are no different. They too yearn for acceptance, to belong and be useful, functioning members of society. But we have to remember they are the ones that are challenged and we need to help them, meet them half way.

This makes it very important to all of us to educate ourselves and our kids about what is the appropriate behavior when it comes to interacting with children with special needs and their parents.

1. The first and most important rule of etiquette is – never ignore or pretend the child doesn’t exist. That’s the default mode that we all employ and think we’re being tolerant. But you just looking the other way will make the child and family very uncomfortable. Don’t skirt the issue, address it. Acknowledge the elephant in the room.
2. It may be a small or huge adjustment to you based on your comfort level but if you can start with a look straight in the eye (instead of a fleeting , uncomfortable glance) and a smile on your face, you would have already built a big bridge to reach out to a child who could really use a friend. This communicates – I care and you are OK just the way you are.
3. At times you may see a child who is throwing a blue fit for no apparent reason. He may lie down inappropriately, scream, or cry. I have received stares of disapproval, shaking heads and accusatory looks as if I’m possibly responsible for child neglect or abuse. But you have to understand that this may be because things are not going his way or simply because he is overwhelmed or over stimulated with the situation at hand.
4. Should you encounter such a situation, don’t stare and walk by shaking your head. My child is acutely sensitive to the piercing glances of strangers even when he is in the middle of a meltdown. Ask if you can help. If you are told to stay away or your advances for help are refused, just smile at the child/mom/dad/care giver encouragingly and leave.
5. Inappropriate behavior may manifest itself in different ways – instead of lying on the ground throwing a tantrum a child maybe playing oddly, maybe grab food that you’re eating, he may be repeating meaningless phrases over & over again. What should you do? In all situations like this I’d say use common sense, be accepting, smile, be non judgmental. Both the child and the poor harried parent will be better off for it. The less self conscious the child feels, the more likely the situation is to resolve itself.
6. Don’t talk down to a special needs child under the assumption that just because he is behaving like a two year old, he thinks like one too. Autism is primarily a communication disorder and you will be surprised how bright, creative and thoughtful these children are. Autistic children who can barely talk or with poor motor skills have created beautiful pieces of literature. Communicate at an age appropriate level even if you don’t receive feedback to validate it.
7. The key is to treat these children with compassion, maybe the child will cheer up with your encouraging words or at least will not be as self conscious under your critical stare and will not feel the pressure to conform, and will feel accepted in spite of his faults.
8. Just accept them for who they are and love them no matter how they behave. You may be surprised to know that the seemingly most low functioning child who to you may appear non verbal or non responsive will understand that and relax around you.

What about the young kids /teenagers who don’t understand this strange behavior? Well, it is my belief that they take their cues from us as adults. If we take things in our stride, don’t over react, treat people with respect in spite of their differences, then so will they. A great example of this is my 9 year old younger son. He has been exposed to all kinds of people since he was little. He has met many a family that is similarly challenged. I have never seen a child more accepting than him. All of us adults could learn a thing or two from his empathy and non-judgmental approach to people.

Consider volunteering your child to be a buddy to a special needs child. In the crazy schedules our kids have, it may seem a lot but after a few weeks it’ll just seem so natural. This is the best way to teach our children to be kind and considerate and you will be doing an enormous kindness to the child you meet.

Each of us can make a difference and it’s not going to cost us money. All you have to give is to give of yourself, your humanity, and you will get back exponentially.

These are just my views and I would like to use this forum to start a dialogue. If any of you readers have a situation where you felt at a loss and could use input on how you could have handled it or a hypothetical question in your mind that’s holding you back from getting involved in a child’s life feel free to post your comments and I will certainly address them. And if you are in the special needs world and have something to share I would love to hear from you.


22 thoughts on “Autism Etiquette

  1. Silvia Marquez

    Great article!!!

    We often forget that even with children that do not have special needs there can be temper tantrums and inappropriate behavior. Although it is no where near the same, the empathy should be there. As a teacher for autistic and developmentally delayed preschoolers, I do my best to instill in our students not only the basic curriculum, but joy. After all they are children!

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  2. Haleh Niazmand

    Nandini,
    So wonderfully said and I couldn’t agree more with each and every point you made.
    I hope that what you have brought up here is repeated many times until everyone has a chance to listen and hear. Perhaps we need to learn to go beyond just tolerance and open our hearts.

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  3. Jennifer

    Its hight time now that public must be familiar with this etiquette. As a mother of a 13 year old boy affected with autism always suffer the same scenarios though this doesn’t stop me taking my son as often as I could. But how many time do I need to tell the passers by that its not a show whenever he throw tantrums or make some “unofficial” sound.
    We can use the media to support us on this battle.
    We parents should work hand in hand to make this come true.
    Thanks Nandini.

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  4. vimal

    Hi Nandini,
    Great article.Being a special needs mom to a fragile-x child,whose behavior can give good ABA experts a run for their money,I wish ur article could be read by a larger forum.Sometimes I wonder how should one respond to comments like-‘Thats so annoying’ or ‘shouldn’t you tell him something ?’
    Often I miserably explain that child is disabled/unwell/has adhd,as little as I can get away with without feeling too tired.Usually after most people turn immediately sympathetic,but that saddens one as there is a thin between compassion and pity.
    vimal

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  5. Janna Woods

    Nandini,
    Your words are very thoughtfully spoken and well written. We should always remember that children challenged by autism are CHILDREN FIRST! No one should be judged by their outward appearance and all should be loved and accepted just because they are here. The golden rule still applies “Do unto others as you want done unto yourself”. Thank you for reminding us to have manners and respect for all people!
    Janna

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  6. Minal

    This article should be read by everyone is the society. The awarness about “Autism” need to be spread across so that parents like us can take there “Not typical children” out in society more often and without stress.
    Our kids will get benefited only by letting them be in the community more.

    Minal

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  7. Nandini

    thank all who have read this article & have responded with their kind comments. It was a relief to hear from the parents of other children with special needs, that they did identify with what I had to say. I was afraid to sound like the voice of a community without having received their mandate to do so.

    I also want to thank Vidya who thought of the concept of the article & then added so much by making my rambling words more readable.

    Thank you

    Nandini

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  8. Alpana Singh

    Very well written article from a parents perspective. As a special ed. teacher I have been in similar situations on field trips. Our children do have meltdowns in new situations and places with a lot of stimulations. While we are helping the child we have to also be aware of people around us who are glancing at us or as Nandini said” stares of disapproval, shaking heads and accusatory looks”. Over a period of time I have learnt to smile at them and let them know that the child needs space and time.I can understand how difficult it is for a parent. You have to remember that he/she( child with special needs) is a part of the society and has the right to be there. Unless he/she has the opportunities to be out in the society it is hard for them to learn.
    I also strongly believe that we should use the term ” child with special needs” and not “a special needs child”.
    We should not disregard that he/she is a child first and look for all the abilities each child with special needs have. I approach it as ” Children with Different Abilities”. I have known Rishab personally and remember the time when he sang for the Talent Show at school. There was pindrop silence when he started to sing. WOW!

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  9. Krish

    Great piece…

    Nietzsche comes to mind – “And those who were seen dancing were thought to be insane by those who could not hear the music”

    Recognize that to care for anyone else enough to make their problems one’s own, is ever the beginning of one’s real ethical development. How far we go in life depends on our being tender with the young, compassionate with the aged and challenged, sympathetic with the striving and tolerant of the weak and strong. Because someday in life we will have been all of these.

    Communication does not depend on syntax, or eloquence, or rhetoric, or articulation but on the emotional context in which the message is being heard. People can only hear you when they are moving toward you, and they are not likely to when your words are pursuing them. Even the choicest words lose their power when they are used to overpower.

    Attitudes are the real figures of speech.

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  10. Rupi Wijay

    Hi Nandini,

    Very Well written article. As a mother of an Autistic child I could relate to every single line in your article, which all seemed so meaningful.

    Rupi.

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  11. Deep

    Very nicely written article, Nandini. I’m glad you brought out the fact that Autism is not just about melt-downs, it’s also about odd behaviors; and also that speech delays do not indicate lower mental levels.

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  12. Murugan

    Hi Nandini: congrats on a very well-written article! You have accurately verbalized the thoughts of many parents like myself who have a special-needs child and regularly face situations similar to what you have described.

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  13. Ahmed

    Excellent article Nandini. The 8 thoughtful points you have written in this article can be printed and passed around as flyers!

    A lot of folks don’t realize that a simple understanding attitude towards the family can make such a huge different for the parents as well as the kid in that particular situation. Your article rocks !

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  14. Geeta P

    Dear WNI,
    This article has come not a day soon! Though written with reference to people with autism, at many levels this article is a behaviour Bible for all. Yes, we could all learn from kids who are exposed to disabled children. And empathy is recognition and acceptance. Beautifully written. Kudos to you!

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  15. Srini Srinivasan

    Dear Nandini:

    I salute you for your courage and candor in posting this article. In my limited view of the world, I find that parents of autistic children have their own barriers to overcome in acknowledging the elephant in the room. A big part of this is their hope that their child would pass off for ‘normal’.

    In today’s world where 1 in 150 children may fall in the autistic spectrum, it is time parents of all stripes to understand the realities and at least be aware of how they could respond. I appreciate your offering us these insights.

    In closing, I’d like to recall a rather amazing parent and soccer coach, Kevin. We started the season with this kid who would not take direction, would be extremely disruptive and refuse to cooperate at the most critical times. Kevin did not cut him any slack nor did he show any sign of resentment – a tough ask for a coach as competitive as he is. At the end of the season this child was as proud hoisting his trophy as the rest were and if you didn’t know it, you could not tell he was any different from the rest of his team.

    I daresay there are a few mor parents of Kevin’s sort of out there.

    Cheers
    Srini

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  16. Michelle Crowe-Paz

    Dear Nandini,
    Please remove my posting from 4 July 2007. I hold the utmost respect for your article, but would appreciate you removing my post.

    Thank you,
    Michelle Crowe-Paz

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  17. Pingback: Autism Etiquette - AllDeaf.com

  18. valerie Brenner

    OMG. Michelle. Godo fo ryour writing an article on this. Although my son is highly functioning, autisim doesn’t go away. It grows. For those of you of you who don’t know, day by day, things change! Childen turn into audlts. Situations change from small to large. Children who become adults think that they can handle themselselves and sometimes begin medicating themselve. OMG! It is so crazy and scary. Please HELP US HELP THEM! That’s the statement that I think everyone can relate to. I beliueve that this is a statement that everyone mother could live by! Or want to live by.

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  19. Sarah Pressure

    Such a facinating site. I actually enjoy all the wide variety of topics that you cover and the high quality of the writing. This has become an actually fun blog for me to visit.

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