For you created my inmost being;
you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
I was asked recently, "Do you take low functioning kids in your program?"
I stopped for a minute and didn't really want to answer. I thought, I can't answer that question with just that description.
For years, both in our community and even outside our community, this is how we have spoken. We say things like:
My son is lower functioning and he doesn't have access like your son does.
My daughter is higher functioning and I don't know why they won't accept her. You can barely tell she has autism.
Is your child lower or higher functioning?
Is there a school that takes lower functioning kids?
I have greater challenges because my child is lower functioning.
People don't understand just because my child is higher functioning. They think it is a walk in the park.
Our Words Paint a Picture
I know we use these terms and labels to describe something quickly, instead of taking the time to talk about the individual—as just that—an individual. I have used those terms myself over the years, but in the last year, I have thought more about how those terms don't define the particular person’s needs. If I say, low functioning person with a disability, what are you thinking? What is the picture in your head? I have asked others these same questions and I always get different answers.
Some people will say that low functioning people can't speak. Some people will say they can't care for themselves. Other folks will say that high functioning people can communicate and can mostly take care of themselves. I have heard in the past that you can barely tell they have a disability if they are higher functioning.
We now see many individuals with disabilities graduate from college, get PhD's, get married, become CEO's of companies, and all kinds of other things. I think that is amazing! We shouldn't be upset or judge an individual by saying he or she is "higher functioning," and that is the only reason for these achievements. Let's celebrate their achievements.
As a society, we have stood up more for persons with disabilities in the last ten years, but we also have created many terms that are appropriate or are not appropriate to say. It can feel very overwhelming what is okay to say and what is not.
Focus on Individuals and Strengths, Not Functional Level
We need to think about people with disabilities more than how we can define them in a two-word phrase. Rather than people with disabilities being known as high functioning, moderate functioning, or low functioning, let's define one another by individual strengths or challenges.
Now, if someone asks me the question, "Do you take kids who are low functioning?", I answer them with, "Let me learn about your child. I want to know about their journey so far and where are they now. I would love to tell you about my program to see if I have all the supports that they need, and if I don't, I will recommend another place that can support all their needs."
I want to know about Sally. I want to know how she communicates, what are her interests, what bothers her or gets her frustrated. I want to know how she can care for herself, what goals the parents and Sally has for her future, and what they want her to learn next. I want to know Sally’s accomplishments and even the challenges she has faced. I want to know her favorite color, favorite food, favorite thing to play with, and anything else Sally and her parents can share to learn about her more.
Let's focus on building each other up and encouraging fellow parents. Try not to compare, or focus on who has a more challenging life. No one ever really knows the daily challenges we all face, no matter the functioning of your child. Let's acknowledge each individual as a gift from the Lord, a precious unique gift.
We need to throw out terms and talk about persons: who they are, how they are valued, and how we can help them grow. I think if we keep using labels, we will miss out on knowing these people fully or working with individuals that we can support.
This is how I want to talk about my son, saying nothing about his functioning level:
Hi, my name is Patty.
I have a son who has autism. He is 17.
He loves rollercoasters.
He can communicate, but struggles to articulate the words when he feels he said or did something wrong.
He struggles with processing and will sometimes answer you with a large pause. He gets frustrated when people don't give him enough time to answer himself.
When there are constant loud noises or talking over one another, he shuts down by putting his head down, grunting, and clenching his fists.
He used to hit himself almost daily and throw himself on the floor, screaming for a long period of time.
He is working still on regulating his emotions and fully communicating what the problems are, when he is feeling overwhelmed in his environment.
He doesn't like to do many activities at first, but then once he is in the activity he enjoys it. He needs to be gently pushed and encouraged to join the group.
The biggest needs he has are (1) helping him communicate with others he is not familiar with, and (2)initiating conversation with a group of peers. We are working on motivating him to do his independent living skills on his own, one step at a time.
He is very loving and caring, especially when someone is hurting or sad.
So if I call a program or school, this is what I would want to discuss. I wouldn't say that my son has high functioning autism, and ask if the program takes these kinds of kids. Instead, I would learn about the program, and I would want the program to know about him, and then decide if it's a great fit or not.
Challenge: How can you change how you describe your child to others? How can you bring more awareness to others in the community to ask about the individual person’s strengths and challenges, instead of their functioning level? Let's be the folks that acknowledge an individual’s character, his or her needs, and these individual personalities that God created.
Patty Myers is the Director of Building Pathways.