When my daughter was about three years old, the social worker at the integrated school she attended told me a story. It was about a non-speaking autistic boy who was able to communicate when he was older. I don’t remember if it was typing or what means he used. Anyway, his mom asked him: “Where were you during all these years?” He answered: “I was here, listening.”
I froze. I started thinking and trying to remember absolutely everything I had ever said about my daughter in her presence.
My kiddo was diagnosed with a speech delay at two and stopped using baby jargon somewhat late, as I posted previously. Now, I absolutely adore her and think she’s incredibly beautiful, smart, silly, a climbing monkey… so most of the comments I’d made about her were surely positive. But it is possible I did say something to her teacher or to my husband (her dad), or to her brother, that could be hurtful.
This is something that not only parents of children with a speech or communication delay go through. Parents of all children, including those that know for a fact that their children hear and understand them perfectly, sometimes say really hurtful stuff about their children. Maybe the kids can take it. Maybe they build a thick skin. Maybe that’s the way their parents use to teach them about the awful, uncaring world out there.
But psychological studies have shown that it’s the opposite. Hurtful words hurt, period. They lower your self-esteem. They make you feel like you don’t belong and that you are not worthy. They deprive you of the “secure base” you deserve. Contrary to what some people think, being treated roughly doesn’t build resilience. Having a trusting, loving relationship with your parents does. Schools, by the way, should also strive to foster belonging and providing that secure base.
Having that secure base is very important for people in general. It is incredibly more important for autistic people, and especially so, for those who don’t communicate in a “typical” way and cannot immediately tell or show you that they’re being hurt by your words.
Speaking in a demeaning way about an autistic person who cannot respond immediately, especially when the person speaking is in a position of power (bus driver, teacher, therapist, parent…) is abuse. Autistic people do hear them. They do understand what these people are saying. If the situation is difficult, the demeaning language will escalate it. The person in charge is not helping the autistic person, and they are not helping themselves. Speaking that way doesn’t make them a better person. It just makes them a bully. Unfortunately, it does happen that children are subjected to this type of treatment. I know of a child who doesn’t speak, and for a long time didn’t communicate by other means. He has been abused by teachers, therapists and transportation staff. At the time, he could not communicate what he was feeling. Something that commonly happens in this situation is that the children will try to defend themselves; for example, they could refuse to enter a space, or they could push, shove, or hit someone. As can be expected, then they’re considered “problem kids” and aggressive. At the same time, they are still considered as unaware of what is going on around them, so their behavior is not seen as a response to mistreatment or verbal abuse. It is a terrible downward spiral, with negative treatment eliciting aggression in response, and that prompting more negative treatment…
But what if they don’t tell it to the autistic person? They only tell their friends, or other teachers, therapists, parents… they may feel they need to vent and complain. Or “process it” through humor and jokes. What’s the damage then? The damage is that they are creating and sustaining an environment that is hostile to autistic people. They are normalizing thinking that autistic people are “less than,” and they are normalizing hate speech.
People can start this behavior quite innocently, with minimal comments. But if it doesn’t stop there and escalates to the next level and then the next one… finally the people that work or live with autistic people end up feeling like they’re martyrs for, basically, doing their job, and they start looking down on their students, patients, children… and very bad things can happen. I’m really not exaggerating at all.
Unfortunately, many autistic people have lost their lives at school or at home. In some cases it’s been because they are held down with such force, that internal organs are damaged. In others, it’s been actual murder. I have witnessed how a group can become polarized and intensify this feeling of superiority in relation to autistic people, and of martyrdom among those that work or live with them. I left several online groups because of this. It is easy to see the negative publicity and propaganda published by NGOs that use fear mongering to obtain funding. And there are internet sites and groups that can, definitely, be considered hate groups. It is awful. I cannot, don’t even want to imagine, what an autistic person feels reading what they post.
It is very enriching for everyone to read what non-speaking autistic people write. They state that they are hurt by demeaning comments, and that they can hear & understand what is going around them. Emma’s mom, Ariane Zucher, wrote in Emma’s Hope Book about a situation where Emma was taken to the wrong school and was seen as being aggressive because she refused to get off the bus. Rami Kripke-Ludwig wrote a very insightful article on about hurtful language, Carly’s Cafe by Carly Fleishman shows her point of view about what happens during a coffee shop interaction, Ido Kedar has written books and has a blog. Amy Sequenzia writes in several outlets and also blogs. And there is an anthology written by autistic people who type to communicate: Typed Words, Loud voices.
So, this month… be mindful of how you speak about autistic people, both in their presence and to others. Look for websites that respect them and avoid those that speak about them in a demeaning or hurtful manner. Don’t donate to organizations that use propaganda based on fear. If you do want to donate, donate to organizations founded by autistic people and/or that have acceptance and inclusion as a goal.