Before this child was known to the world as “the girl with autism who expressed unimaginable intelligence”, she was a child who used baffling self-stimulating behaviors and could not speak. She experienced support for YEARS. Her family and team supplied hours of behavior analytic intervention. Her mother describes how hard she worked to keep language in front of her child, literally in front of her by using pictures and words to label household items- all the time. Her family describes how they tried never to give in or give up hope, ALWAYS requiring her to communicate a want or a desire before accessing that thing.
To the parents of my early intervention clients whose children are not yet verbal, whose children’s hands don’t express meaningful gestures yet, whose eyes don’t make sustained eye contact yet,
This is to you:
Have you seen this? Some of you haven’t. You can go check it out for yourself and come back in ten minutes.
Some of you already have. You contacted me and we both watched videos in the comfort of our own homes. There were tears in separate houses that night as we struggled to make sense of this.
My letter is to you, parents who have a child with unimaginable potential that is often unexpressed. My letter is to you, parents who hope and see results weekly but then by Wednesday are daunted by all there is to do, and understand that there is still so far to go. This letter is to you, mothers and fathers who are taking my suggestions literally when I ask you to arrange a therapeutic environment all day.
What can we say about the years of therapy, and how they affected the future person your child will grow up to be?
The girl in the video spoke with incredible intelligence and beauty. At first her fine motor actions looked laborious, and we were not sure if she was being assisted. And then we saw her words across years, settings, situations with someone sitting beside her or not. We, her viewers, watched as with strength and persistence she typed and typed, as long as it took hunting the keys with halting hands. She began to describe her feelings about being in her body, how difficult it was to coordinate her brain and actions, how it felt to experience the sensory world, why she felt she needed to throw her body against a surface… and she joked around with her father. He agonized over this. He has his daughter back. But after all these years… imagine what he went through before her “breakthrough”, before she experienced the behavioral cusp of learning to type, which opened up new worlds of reinforcement—and access to the verbal community. Think of all the years of childhood and adolescence and more than a decade of not knowing she could understand him. How long had she understood language before being able to communicate herself, we wonder.
What made the difference for her?
When this young lady was a little girl, and even as she was learning to type, her family and team of therapists emphasized she needed to use communication before accessing what she wanted. This was not meant to be cruel- it gave her the countless opportunities to practice the experience of expressing what she wanted before she got it. Requiring it every time was difficult, I’m sure. It takes work, every day, to use naturalistic strategies to make SURE a child communicates before accessing things she needs or wants as the day proceeds. Make sure that access to preferred or needed events, is CONTINGENT on a social interaction in which the child requests the event. Stick to it. Accept only the best approximation the child can make in the moment. Be consistent but also flexible, insuring the child can ALWAYS make a communication attempt during an interaction. (Understand that sometimes a moment is more difficult and there is more going on and you might temporarily accept less than you did this morning, knowing you will come back to the better approximation, and the child will be able to do it. If the child can look and use a word to request his favorite train, but today he is only making a sound, we can accept the sound right now. But in a few minutes we can model “train!” as we hold the train out. As he reaches for the train, wait a moment until he tries to say “train” and deliver the train.)
To support kids that may grow up to use a communication system like typing or an ipad:
We can use contingent access when they are young, to insure that when they are around adults, they get countless opportunities to practice doing something social and communicative, before their environment changes and they get what they want and need.
We need to gently let them know looking at others means good things, not bad things, are coming. We need to remember to say their names when we catch them looking at us or happily playing or engaged, not just when we need something from them.
We need to help expand their worlds, by giving them enough practice to get good at something. Practicing picture exchange once a day or twice a week won’t teach communication. Playing with a toy with your child once a week won’t build strong play skills. It’s not about the hours so much as it’s about the learning opportunities. We can teach our babysitter, the child’s grandparents, the child’s nursery school teacher, the child’s occupational therapist, or anyone- to use therapeutic interaction. Contact us (or your local behavior agency or BCBA) if your team needs more help building in therapeutic learning opportunities throughout the day.
What can we say about the children?
We hear them. We hear that they are hurting and unable to express needs, let alone express all the intelligence and beauty that is inside. We need to help them practice their best way. We need to give them a reason to express.
We want to help. We want to do our best to make sure they learn a communication system that is meaningful to them, that is the easiest to use out of all the options they’ve tried, and that allows them experience new worlds of reinforcement.
We understand that we have to start somewhere, and we know that even if the child learns to type complete sentences one day—we still needed to start here, at early intervention, with measurable units of behavior and communication that we can see changing daily.
We want to be consistent for them. We don’t want to hurt, but to support. We want to give them a way to express their pain, suffering, joy, needs, ideas. We need them to know how meaningful language is, and we have to be diligent and not give up when it’s hard.
When they’re hurting or hurting themselves, we want to find a way out. We need them to learn how to access that way out through appropriate behavior that doesn’t hurt.
When they’re not able to express what they need to, the way WE think they need to express language, we need to find other options. These other options need to be things that don’t hurt others or themselves.
We need to collaborate with therapists and families to give our best shot at developing your vocal skills, fine motor skills, and gross motor skills, so you don’t find it as effortful to communicate whether you use sign, speech, or an augmentative device.
And we need to keep trying.
To the kids, to the students, and to the adults who have not yet found their voice:
We must keep trying. You’re trying too, and we see how hard you’re working. We need to tell you that, when you’re working hard.
We know it takes more out of you than it takes out of us, when you have a meltdown or tantrum. We want to help you not have to use this to be comfortable. We need to develop an interaction language with you, so you can tell us in advance if you really need a break, are having trouble controlling your body, need some help, want to leave, or just feel terrible.
We know that CONFIDENCE makes a big difference. We can see you on the videotapes, Carly, interacting with friends, joking with your dad, introducing Temple Grandin as your idol- we can see you blossoming and we love to see that the cusp of learning to type has given you access to whole new worlds that were closed to you before. But we also see the confidence as you are able to interact with other kids your age, blog and write about helping others, and going on shows like Larry King. You are amazing, and how hard you have to try each time you communicate through typing.
We thank you for your advocacy for others.
We read the comments on your videos and understand not everyone will “get” you. We empathize with you. We see others questioning, judging, and making trite comments without knowing how hard you have to work.
Someone wrote, as you smiled and typed interacting with your therapist, that he didn’t like the way someone was giving you chips as you practiced your hard work.
But we’ve been there, we’ve had to use reinforcement to strengthen a skill that we know we need to strengthen. If there is nothing contingent on using a new skill, we know how easily it is to give up and stop using that skill. We know that you are learning to type for the meaningful access to communicating with others that it gives you, you’re not typing for chips. J But we still snack when we’re working on a book we’re writing…
We thank you for providing your perspective on how it feels. How it feels to use eye contact, use self stimulatory behavior, or struggle to type.
You are an example, a model, someone in the world that others look up to. And thank you for talking to us, Carly. What a gift you have given.
To the parents:
Thank you for your persistence.
Never give up.
Beautifully written and deeply meaningful words to a parent who has been fortunate to benefit from your knowledge, expertise and understanding during the early part of my child’s early intervention. To me, you have captured the TRUE meaning of “autism awareness”.
Thank you for getting the words out there and keep up the good work!