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“It is necessary to educate better”, “You need to stay at home with such children” … Every parent of a child with an autism spectrum disorder (ASD) at least once in his life heard such statements from others. Advice and questions are taken by surprise in the doctor’s office, in the entrance of your own house, on the playground or in the store, and sometimes in the circle of loved ones. Why do people behave this way and how should the parents of a child with ASD react?
Raising a child with developmental disabilities is not easy and without tactless and shameless comments, questions and advice from the outside. But, alas, there is no getting away from them. How does the mother of a child with autism respond to comments? And how can we help if we are witnessing a similar situation? The opinion of psychologists.
“The main thing is to develop your own coping strategy”
Maria Sisneva, clinical psychologist (Moscow)
Why do people even consider it possible to give advice and speak out against other people’s children? The reasons for such behavior can be different: lack of politeness and delicacy, ignorance, the desire to “do good” and “benefit”, passive aggression, fear at the sight of a person unlike them. But the reasons here are not so important. The main thing is to learn to protect yourself and your child, your boundaries.
In psychology, there is the concept of “coping style” or “coping strategy” – a typical way to cope with something. Someone can rudely besiege impudent, and someone after that worries. Someone uses humor, can paradoxically or caustically laugh it off, send off the interlocutor with his advice. And some even ignore comments. There are also those who try to get through to the interlocutor, to explain to him that he is wrong.
It is best to look for your individual coping style. The statements below are a “field” for training. Write under each of them what you would answer and how you would behave with the interlocutor. Analyze what style of behavior is comfortable for you. And, most importantly, remember: yes, these people hurt you, but in reality they do not affect your life in any way. But you have the right to hit them back – perhaps the next time in a similar situation they will remain silent.
“There are children who are much worse off.” – “There are people who do not comment on other people’s children”
Here are answers to common sayings in my coping style.
- “Did someone jinx him, did they take him to his grandmother?” “If she looks like you, I’m afraid he’ll get worse.”
- “Did you do surgery on his head?” “I would rather do heart surgery on rude and tactless people. Do you think it will help?”
- “That’s because his parents are alcoholics.” “You have a minute to think and apologize.”
- “He doesn’t talk because he communicates telepathically?” – “Yes! And you know what he just thought of you? You can’t hear, but we have telepathy.”
- “When he grows up, he will pester everyone, you will need to castrate him.” – “And you will need to read the international Convention on the Rights of Persons with Disabilities … Although, start at least with a book on elementary rules of politeness.”
- “I can’t imagine how you can stand it, it’s terrible …” – “It’s unpleasant for me when you say that. I love my child. Maybe I can tell you how best to support me?
- “Patience to you!” “It could end right now.”
- “You know, there are children who are much worse off.” “You know, there are people who don’t comment on other people’s children.”
- “And you didn’t try to educate him?” “I’ll start right after you try to stop giving unsolicited advice.”
- “Didn’t your husband leave you?” – “And you?”
Experiments show that a person feels more confident when he is not alone.
Separately, it is worth mentioning those cases when such comments are made not by a saleswoman in a store, but by someone close. Here we need a frank conversation, but without getting personal. Criticize not the person, but his behavior. Say that his or her words were unpleasant to you (you can explain why). Please let me know how you can be supported. Or maybe you’d be more comfortable if he refrained from commenting at all. If so, this should be clearly stated.
How can you help by witnessing the mother of a child with autism being asked tactless questions or making inappropriate remarks? Be sure to support! Two people is already a team. Many experiments show how much more confident a person feels and how much easier it is for him to fight back if he is not alone. Remember the scenes from westerns and action movies, when an ally suddenly appears next to a lonely hero and they instantly defeat all the villains.
“The main thing is not to “connect” and not give the interlocutor a chance to hurt you”
When I was shown a list of questions and remarks with which strangers turn to mothers of children with autism, I thought it was a prank. I read it again, and a wave of indignation swept over me. And this is probably the first reaction for many of us. However, different situations require different approaches for their resolution.
Let’s say shameless people on the street ask you, looking askance at your child: “Is he a fool? Rain Man?”, “Will he remain like that for the rest of his life?”, “And what talents does he have?”, “Well, have you spoken already?”. All of these questions indicate that the person asking them does not allow or ignores the distance between you.
As a rule, the purpose of such questions is the desire to satisfy their idle curiosity, but something else is also mixed in. “I’m interested, so I’m involved” is almost like giving a pat on the shoulder or giving candy to an unfamiliar child. In the UK, where I live, such behavior is socially unacceptable, although this does not mean that no one does not behave in such a way – in any multicultural place there is a chance to meet a wide variety of reactions – but it is strongly condemned by society and may even be the subject of legal proceedings.
In the post-Soviet space, such a “sympathetic reduction in distance” is often perceived more as a manifestation of openness and sincerity. The best reaction, in my opinion, would be distancing: you should understand that the interlocutor is unconsciously trying to piss you off. Come up with some universal answer in advance, preferably as polite and cold as possible (for example, the following occurred to me now: “The complexity of some questions lies in the impossibility of giving them a timely and exhaustive answer”). You can even write it on a piece of paper and put it in your wallet or pocket.
The only remedy against “compassionateness” is complete disregard for
If suddenly you are approached with inappropriate comments or questions, try to take 3-4 deep breaths into the diaphragm, focusing on the air that you inhale, and then exhale it just as slowly. Further – according to the circumstances: you can pronounce your universal answer, but most likely you won’t need it – your calmness will increase the distance that your counterpart was trying to close. The feeling of the integrity of your space will not be disturbed, the interlocutor will not be able to spoil your mood.
Another group of remarks is unsolicited advice: “Send him to a boarding school, give birth to a healthy one”, “Yes, you just need to spank him well – and he will immediately become normal”, “You need to stay at home with such a child, and not go shopping”, “I can’t imagine how this can be tolerated.”
When my daughter was three years old and she screamed heart-rendingly, lying in the aisle of a plane that landed at four in the morning, all the “compassionate” passengers around gave me advice. I apologized, snapped, got angry, and felt embarrassed about my child’s behavior. But then I realized that the awkwardness had to be experienced by people invading my space. I coped with the situation, despite the fact that it caused some inconvenience to others. Nothing catastrophic for the world happened.
The remarks of “compassionate” and “sympathetic”, as a rule, are motivated by the desire to suppress. Many older people have been brought up in a repressive pedagogy and see negative feedback as a way to resolve a problem or conflict. So the mother answers the call of her adult son not with sincere joy, but dry: “And why didn’t you call for so long?”
“I don’t care,” “advisers” often say in such cases, perceiving politeness and distance as indifference and coldness. In my opinion, the only remedy for this “compassionateness” is complete disregard. It is important to learn to let the spoken words pass by – imagine that they are addressed to someone else, you should not even listen to them. In such cases, you can turn on a special melody in your head. Try to come up with your own technique, the main thing is not to “connect” and not give the interlocutor a chance to hurt you.
The interlocutor does not talk about you, but about himself, about what he believes in at this particular moment
I would call the last category of remarks explanatory: “There are demons in him, you need to go to church”, “This is because his parents are drug addicts”, “Autism is now fashionable”, “God sends tests to those whom he loves most” , “You have such a higher purpose”, “You need to shoot a negative scenario in sand therapy.”
Here everything flies in a heap – from cosmological explanations to the theory of a world conspiracy and the advice of healers. Despite the absurdity of many “explanations”, it is difficult to take them with humor, especially when they are taken by surprise. But everything falls into place, if you understand that everything that happens is pure projection. The interlocutor speaks not about you, but about himself, about what he believes in at this particular moment.
Imagine that, for example, a supporter of the theory of a flat Earth is talking to you. Would you react to his words? Hardly. It’s the same here.
But what if you have witnessed how tactless advisers besiege the mother of a child with ASD? Is it necessary to intercede or is it better to pass by? How to help so as not to injure and accidentally make mother and child even more painful or unpleasant?
In my opinion, there is no clear answer, but I would still suggest openly expressing support. The main thing is to let the parent of a child with autism understand that not the whole world is against him and that you can be counted on. At the same time, I would not enter into a direct confrontation with a tactless interlocutor, realizing that often such a person is only waiting for this.
Фонд and the association thanks to Tatyana Golubovich, Ivan’s mother (Minsk), and Ekaterina Zalomova, Ivan’s mother (Novosibirsk), for a selection of statements addressed to mothers of children with autism.