This post is inspired by many interactions I have had both online and in “the real world” with other parents of Autistic children. I have noticed a significant emphasis on functioning labels in the autism parenting world. When I have made the argument that functioning labels are arbitrary and make no sense, I am accused of not knowing what it is like to parent a child with “real autism” because I would not say these things if my child were not “high functioning”. I am very, very sad for the children of such parents. No child should ever feel like they are not completely and unconditionally loved. I am also heartbroken for those parents, because they are turning their backs on a loving and beautiful relationship with their own children. No amount of “support” and “sympathy” is worth that.
First, let’s address those functioning labels.
What is “high functioning”? What is “low functioning”?
Often, the distinction seems to be made on the amount of verbal speech your child uses that is considered “functional speech”.
So, a child who can talk and have a conversation with you is “high functioning”?
What about a child who uses scripting instead?
What about a child who sometimes loses speech and uses typing to communicate?
What about a child who sometimes has a hard time with typing, so they have to use picture cards to communicate instead?
What about a child who finds that the picture cards are sometimes too overwhelming and communicates the only way they know how, with frustration and sometimes, SIB’s? Oh, you didn’t know that behavior is communication? Because it is.
All of these describe my child. There are days when everything fits together, and she is fully supported and her sensory needs are being met, and she can have a lively spoken conversation, even with strangers.
More often though, her speech is scripted.
At home, she mostly types to communicate because there is no pressure on her to “conform” and stop acting Autistic already.
On the days where she has reached her limit with the very difficult task of trying to talk, she uses the picture cards. Usually though, if she is too exhausted to talk, that is when her frustration comes out and she communicates the only way she knows how to. Some people call them “bad behaviors”. I know better.
Is that a “high functioning” or “low functioning” child?
You tell me.
What about the things that she needs help with?
At 11, she still needs me to stay next to her so that she can get to sleep. She also needs a lot of help staying asleep, but that’s okay. That’s what she needs and I am her mother. This is what I am supposed to do.
Though she is an avid learner, my child needs help staying focused and “on track” with visual schedules and checklists. Without them, she will often become confused and anxious because she is unsure of the next step in her school work. We support her because she is worth it, and lamenting about how much support she needs won’t change the fact that she needs it. It will just make her feel bad about who she is and the things that she needs help with. Because we value her, we know that helping her with these things will teach her that needing support is not shameful.
When you go in our bathroom there are picture cards tucked inside the medicine cabinet to help her with toileting and hygiene. She will often forget a step if there is not a visual cue to remind her.
My “high functioning’ child is not yet potty trained and still has to use diapers. We support her and teach her, but we never shame her publicly or otherwise for being Disabled and on a different developmental path than other children her age.
Wait, does that make her ‘low-functioning”? I get confused because she is also reading ‘The Hobbit”, which might make her “high-functioning”.
It’s almost like I was right when I said that functioning labels are arbitrary, ableist and totally made up.
Perhaps it is sensory or dietary issues that decide our functioning label?
We are fairly careful with our diets because many foods trigger seizures or migraines in my child. Even though these issues are separate from autism, many people don’t realize or understand that, so I thought I’d include this in deciding her functioning level. In addition to these health concerns, sensory issues with taste and texture limit her diet even further.
My child also has several sensory issues with auditory processing that makes going to crowded box stores or restaurants very difficult for her. So, we accommodate her instead of telling complete strangers on the internet that autism is to blame for our hard time parenting or the adjustments it takes to support her. (for the record, we eat meals late or early if we want to go out to avoid the crowds and we don’t apologize or become embarrassed by her being openly Autistic in public. She has a right to participate in the community as much as anyone else while being her own authentic self at the same time).
She also requires a lot of proprioceptive and vestibular input and a lot of breaks throughout the day to stay regulated and happy. We spend a lot of time on the trampoline, or spinning or swinging. We spend a lot of time stimming. Because knowing when you need to take care of yourself is an important step to learning self advocacy, we always encourage her to speak up when she needs a break or sensory play time. Some days she spends the majority of her time taking breaks instead of doing school work. So, is she “low functioning” because her sensory needs are so intense or is she “high functioning” for recognizing what she needs to regulate her mind and body?
Confusing stuff, these functioning labels!
Since I am not sure she would fit neatly into any of these “categories” of autism anyway, and because I find them disrespectful to her as a human being, I refuse to use functioning labels. My child is Autistic, and I love and accept her no matter how much support she needs. No matter much spoken language she uses. No matter what, because her life is worth living. Honestly, I am disgusted by those who would force me to put her in a category and determine how worthy she is based on what she can or can not do.
How dare anyone attempt to place a value on my child’s life?
So, now Let’s talk about your assumptions
When you assume that my child is “high functioning” (whatever that means) because I tell you that it’s not okay to determine how much acceptance an Autistic person deserves based on a functioning level, you are making assumptions based on your own bigotry. You are assuming that I could only love and accept my child because I don’t know what it is like to deal with “real autism”. Do you realize that says a lot more about you than it does about Autistic people, or me, or my child?
It is saying that you think that loving a person you consider “high functioning” is easier than loving a person that might need more support.
It is saying that it’s okay to accept someone who is able to “pass” or conform, but not someone whose disability makes that impossible.
It is saying that some Autistic people are worth more than others.
It is saying that you think it’s okay to write off the very real support needs of people you deem “high functioning” because if they can pass sometimes, they must be able to get over themselves and pass all the time.
It is saying that you don’t know the first thing about autism.
It is also saying that you have some deeply held and rather troubling ableist beliefs that you should probably come to terms with and get help for. You owe that to your children.
On a personal level, I find those assumptions to be incredibly insulting because you are putting a value on the life of my child based on your own ignorance. Don’t you dare do that to my kid. My child needs a lot of support. I still love and accept her completely and totally no matter what developmental track she is on. I am disgusted and offended by those that think my love for her is conditional and based on her not being a “real” Autistic. Nothing could be further from the truth. I accept all of her, her gifts, her challenges, her whole complete self. She can’t be separated from her neurology and I wouldn’t want her to be.
You are harming and dehumanizing my child and all Autistic people when you perpetuate your ableist beliefs.
Stop telling people that some Autistics are worth accepting while others are not. Stop making assumptions about my child and other Autistic people based on your own ignorance and prejudice. Most importantly, stop talking about autism as if you understand it at all. Because when you use functioning labels, it is clear that you don’t.
About the Author
Romana Tate is the pseudonym of a busy mom. She does not write under her real name to protect her child’s privacy, but felt like she wanted to say something about people’s assumptions about functioning labels. She enjoys spending time with her family and educating parents and families about parenting their Autistic children with compassion, acceptance and unconditional love.