N is for No Means No

NThis is an entry for the Blogging from A to Z Challenge. The entire month of April (except for Sundays) I will be blogging through the alphabet on autism-related topics to celebrate Autism Acceptance Month.

N is for No Means No

As adults we talk about things like rape prevention and use the slogan “No Means No.” That is to say, respecting someone else’s “no,” at any time, for any reason, is the rational, adult, ethical thing to do. There are a lot of strong and powerful words being put out about respecting other people’s boundaries and autonomy.

A strange thing about “no means no” is that it only applies to adults. The more vulnerable members of our society — children — are rarely allowed to own their “no.” And then somehow we expect them to morph overnight from people who have spent nearly two decades having their boundaries violated by people more powerful than them (adults) to people who are eager to respect other people’s boundaries, even the boundaries of those who are weaker than them (often women, thus the rape prevention connection of this slogan.)

And, for the moment here, I am not talking about just Autistic children. This is something we do to all children, regardless of neurology. Now, you’re probably saying that sometimes children need to have their boundaries violated and I will not argue that with you. For example, we have to teach children that there are big, fast-moving, deadly cars to pay attention to and not run in front of. This is a perennial facet of parenting — in other generations there were Roman soldiers to not piss off or hungry saber-toothed tigers and dire wolves to not look like lunch in front of.

Another example is life-saving/changing medical treatment. Kids don’t want surgery or chemotherapy or orthodontic braces but parents who choose their child’s health over their boundaries are making a loving choice. Hopefully, there is lots of talking about outcomes and the boundaries are violated in as gentle and informative a way as possible. There are some boundaries in childhood that are pretty much inevitably going to get dismissed for a particular life-and-death sort of purpose and that’s okay. Difficult for everyone involved, but okay. I am very happy that my parents pushed me into getting my teeth aligned by discussing the results with me and offering encouragement and support to continue when the procedures were more painful.

But there are thousands of minor boundary transgressions made against children all the time. For example, my father — who, I should mention, loves me dearly and was a wonderful daddy — used to answer my request for a chocolate bar by saying, “you don’t want a chocolate bar.” Not “I am not going to buy you a chocolate bar,” or “I don’t have the money for a chocolate bar,” or “I want to see you eat something healthier, so I’m not getting you a chocolate bar,” or “chocolate is for birthdays, Christmas, and Easter, so you’ll just have to wait for the next holiday.” No, he told me I didn’t want a chocolate bar. This was very confusing to me — I had thought I wanted a chocolate bar. I still felt very much like I wanted a chocolate bar, despite being told I didn’t. Were my wants true? It was baffling to me and a minor boundary transgression (telling me I didn’t feel the way it was obvious that I did feel) that subtly chipped away at my sense of self and autonomy.

I’m a very concrete thinker. It never occurred to me that “you don’t want that” was just an expression of speech for my father. It was something far less subtle to me. Wanting a chocolate bar and not getting it was bad enough. Being told that I didn’t even know myself well enough to understand what I wanted was diminishing in ways I’m only now beginning to understand, decades later. Small statements have big consequences, especially when you stack a mountain of thousands of small statements day after day.

But even these sorts of boundary transgressions are minor compared to the level of compliance that is so often expected from Autistic children. Too often, in the name of therapy or early intervention, Autistic children are subject to a systematic demolishing of their sense of autonomy and their right to say “no” and be heard. Autistic children are treated in ways that most people would be horrified were non-autistic children treated the same way.

“Touch your nose.” “Touch your nose” “Touch your nose.” The therapist takes the child’s hand and forces it to the child’s nose while saying once again, “touch your nose.” Then, “good girl! Here’s a gummy bear!” A pause, then, “touch your nose.” “Touch your nose. ” “Touch your nose.”

It is a technique I have seen used to train bears to do tricks. It is a method used to train dogs and horses to perform on command. It is a common behavioral modification program for Autistic children.

A bear demonstrates the “touch nose, get a gummy bear” technique.

Now, there’s nothing inherently wrong with asking someone to touch their nose. I am ten years older than my sister and when she was a little toddler, one of our favorite games was for me (or Mom) to say, “where are your ears?” She would grin and touch them. “Where is your nose?” Again, a smile and a touch. We’d go through all the objects — her toes, her teddy bear, the blue ball, the red ball. She didn’t need gummy bears because she loved the game and the attention. She was eager to show off that she knew all these things. But even if she needed an incentive to show us things, that’s still not horrible. There’s nothing inherently wrong with giving someone candy or stickers for showing that they know the letter S or where their nose is.

Where the touch nose sort of training goes horribly wrong is when we forget that No Means No. Autistic children don’t have as many resources for saying no, so they say it in ways that get labelled as “non-compliance.” They turn their head away. They get up from the table and walk away (or try to!) They cry. They scream. They hit. They bite.

And then they get labelled: violent and non-compliant.

But what were those children supposed to do? No means no, right? For everybody, right? Or maybe only for non-autistic adults? Children don’t get to say no? Children who can’t shape the sounds of “no” with their mouths don’t get to say no?

There are people who say that “touch your nose and get a gummy bear” is very important. There are people who say that a child must go through hundreds of repetitions of touching their nose or they will never have a chance in life. There are people who say a child must spend 40 hours a week sitting at that table, touching their nose over and over. And there are people who say that the cries and hitting are just “manipulation” and should be ignored. The protests have to be worked through and the nose has to be touched. And touched. And touched.

How is it manipulation to try to assert one’s self? How is using any method available to say “no” a manipulation? How can I hear people saying these things and not think of “no means no” and how grossly it’s being violated?

Sexual abuse is high among those of us with intellectual or developmental disabilities. The Arc reports several studies that found frighteningly high rates of sexual abuse against children and adults with intellectual disabilities, ranging from 1/4 to 1/2 of disabled people being the target of serious abuse. A study published in the journal Child Abuse and Neglect found that nearly 1/5 of Autistic children had been abused sexually or physically. This is not a population that should be taught that their no doesn’t mean no. This is a population that needs to be taught to own their no, defend their boundaries.

Look at it this way: is it better to push and push a child, while ignoring their boundaries and attempts to say no, so that they can perform a task on command but are primed for victimization? Or is it better to work within the child’s own learning time table, working to help them develop without forcing them or ignoring their clear statements that their limits have been reached, ending up with someone who accomplishes things at a later age than others and has a strong sense of self, refusing to allow others to violate their boundaries?

I see a lot of parents struggling hard to get their child “indistinguishable from his peers” or “school ready” at the “right” age.  It is worthy to want to help your child. It is important to work to help your child achieve her full potential. But it is crucial to teach your child to say no and be heard. It is vital to respect your child’s autonomy and not sacrifice their safety for your learning goals.

Children develop. Even children with developmental disabilities develop — just on our own schedules.  A study of children who were not speaking by age 4 found that over half of them spoke fluently as adults. When you add in the adults who were not speaking fluently but could communicate well using short phrases, the number of non-speaking children who grew up to be speaking adults went up to 70%.

“But that won’t be my child!” I’ve heard parents retort. “The definition of autism has been broadened too far. Those children are high-functioning. They aren’t like my child! My child has REAL autism! My child has Kanner’s autism, not Asperger’s!”

The first person ever diagnosed with autism by Dr. Kanner drives a car and plays golf today.

Oh, he’s still Autistic. Read the linked article and you’ll see that he’s very Autistic. But he lives in a community with lots of support and accommodations. And love. Donald Triplett is very loved and respected in his community.

Forget “indistinguishable from peers” and focus on building a world of Triplett-friendly communities. Stop interpreting outbursts as “emotional manipulation” and start looking for the root causes. And teach your children — all your children — what boundaries are and how to say “no” and make it stick.

No means no. That is a basic truth of a respectful society. Do not teach your child that they are outsiders to that social contract. Thoreau taught it, Martin Luther King Jr. taught it, and you can teach it: when demands for compliance become unreasonable, it is a fundamental human right to say “no.”

 

 

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4 responses to this post.

  1. Such an important subject and so well addressed.

    Thinking of schooling: one of the things I’ve always found hard to understand is this idea that you can take a group of children who were aged between 4 and 5 on a particular, arbitrary date and expect their development to proceed in lock-step. Even before you consider developmental delays due to autism or other conditions. And yet that is how the school system is set up, and that is what parents have been led to expect: milestones to be reached by particular dates; laggards to be goaded until they pick up their pace.

    There needs to be a change of focus from the destination to the journey. As with life so it is when traveling: the experience is so much richer when one throws the itinerary out the window and enjoys the process of simply being places along the way. And it’s no biggie if you never end up at the place you set out for as long as you’re somewhere you feel comfortable.

  2. Thank you! <3

  3. I absolutely love this post. It addresses that sometimes as adults there are things we do have to say no about as well. But we certainly can phrase it in a way that is acknowledging what the child wants and then re-framing. (chocolate bar was a great example!) Not just no with a “because I said so”. And the most important place to accept a no, honor it and respect it, is when it is a therapy situation, or when you know it is just a rough day and we all have those. Constructive therapies, without restraint, seclusion, or coercion or undermining the child’s needs and desires, can be helpful. I searched long and hard to find a therapist who would accept that some days we would have to not come because my child did not want to come. And I would respect that. We all have those days. And pushing past the no is disrespectful.

    And considering the higher incidence of abuse by others for children who are disabled, we need to empower and teach that when you (the child/adult/anyone) says NO. Then you stop. Perhaps regroup and figure out what will work for that day instead.

    RESPECT THE NO!

  4. I am a former massage therapist and I completely appreciate your insight! Both of my children have ASD and it makes me cringe when other people do not teach the importance of safe touch and “no means no”. Thank you for addressing this important issue!

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