Why are Autism Labels SO Damaging?

Autism: A New Perspective
Autism: A New Perspective
Why are Autism Labels SO Damaging?

Using Functioning Labels with Autism

When it comes to using terms like this “high-functioning” child or this “low-functioning” teen, it takes all of the humanness out of the person. It implies that they are just another statistic, “oh, this person will never be able to live independently” or it pigeonholes people and makes us forget that these are not small robots we are talking about, they are people. 

In order for each individual autistic person to get the supports they need in life – whatever those supports may look like we need to drop the labels because they are doing more harm than good.

At RDI®, we’re not interested in the labels, we’re interested in the unique individual. And people who are dealing with autism are the same as you and me. We have a unique presentation and part of that unique presentation is that we all want the same things, but we’re all different, and understanding that gives us the ability to look carefully, like where we get started and how we move along once we’ve gotten started.

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Full Transcript

Kat Lee: Welcome back to Autism: A New Perspective, the podcast show where we help you understand what is going on in the mind of your child, and we always encourage you that growth for your precious child is possible. I’m Kat Lee. And in this podcast, Dr. Shelley discusses high-functioning versus low-functioning, why these labels can be so damaging to our children? Let’s listen in.

Kat Lee: So when it comes to using terms like this high-functioning child and this low-functioning child, the terms disturb me. I wondered if you felt the same way.

Dr. Sheely: No, I do because I feel like there are some implications when we use terms like that, and one of the implications is that we can project where someone’s going to end up. This person is gonna have no problem, they’re gonna fly through your life, they’re gonna be independent at 21, and this person is going to be at home with you and not be able to do whatever. So I think that’s one of the reasons why that’s always bothered me. And part of it is, to be honest with you, when I first started thinking about people on the spectrum, I thought that way, I thought that I could project this person’s gonna be just fine. Well, I better tell you the truth here. And I was never any good at projecting, my projections were never accurate. And so I realized early on that those terms were not useful terms. And the other thing, Katherine, is I think that when we use terms like that, we categorically pigeonhole someone, so we don’t have to be so thoughtful in the work we’re doing.

Kat Lee: And I think they can be true, whether the words are high-functioning or low-functioning, you just kind of get your… I love the word pigeonhole, it is the perfect visual for that. I think it might surprise people to think that labeling a child high-functioning could actually cause them to not get what they needed. Can you talk about that a little bit? Because I remember I was seeing your children who were labeled high-functioning, which the same thing can happen. But actually, if people don’t think you as a child needs special attention or something designed especially for you, that can actually mis-serve that child.

Dr. Sheely: It can. And I’m remembering one of the first young women that I ever worked with, and she was about 12 at the time, and she said to me, do you know the problem I have? Nobody wants to help me, because they look at me and they say, she’s okay, she just needs to do it. And she said, if I could do it, I would do it, but I don’t know how to do it. And so if I were in a wheelchair, this is her example, if I were in a wheelchair, people would be helping me. If I were blind and had a cane, people would be helping me, but I look okay and I can talk, and they don’t see that I have the same problems those kids who can’t talk have. And nobody helps me. And I think that’s true. I also think that early on in the autism community, people were trying to figure this out. And I’m remembering when the AdAS was being developed, and they were trying to sort out high-functioning PDD-NOS, [chuckle] what were some of the other terms that were being used? Oh, Asperger’s, so they had these ways of putting this group of people over here, and they were trying to quantify it with algorithms that [chuckle] didn’t make sense. And finally, just gave up.

Kat Lee: My son is almost 30, and he received a diagnosis in a very negative outlook when he was two, when he was the ripe old age of two. And so we weren’t really, at that time, caught up in all this trying to figure out where he fit in, we just wanted to help him have the best life he could have and be the most he could be like you are with any of your children. But people have told me since that it was a good thing because of his oral motor problems and his language issues, his specific disorder, which is you have taught me is a co-occurring condition, not a part of autism. He would have been labeled low-functioning, and therefore he would not have been given the hope, and therefore we would not have been given the hope for him for where he is today. Because when those words are stated, and I’ve seen it, unfortunately, so many times, the parents kind of go, well, we’ve been told he’s low-functioning, but we wanna still help him be. And I try to say, let’s try to remove those words, but that’s hard to do Dr. Shelley. It’s hard once parents are told, well, this is really only you can expect.

Dr. Sheely: Yeah. I kind of have to take responsibility for something we did that every now and then pops up, and we were so, for lack of a better term, just upset by what was being said to parents when their children were diagnosed, that we would make up other terms. [chuckle] And so we would say, well, we think that it’s more like an interactional disorder. We had a ton of them, and that was not fair either, because when you’re looking at autism, you’re looking at a neurological difference that interferes with the guiding relationship. And in a nutshell, I think if we had just been able to say that, and with the direction we were taking, I think everyone would have just felt better. Because if you can re-establish that guiding relationship, then it doesn’t matter what the residual presentations are. And also, if you can think about that, then you know what’s co-occurring. You also know if there’s comorbidity and that has to be dealt with. It’s neat. It’s a neater way to think about it, and it’s not condescending, and it’s also not over the top, “Don’t worry, everything’s gonna be fine.” It’s like, “This is where it is and that’s why we need to move forward.”

Kat Lee: And I did want to underline that I know it’s well-meaning intentions. And I love that you gave kind of a history of how this came about. So I know well-meaning professionals were trying to figure things out, but I think what you’re saying is so true, and I can think of parents who’ve come to me and do continue to come to me to say, “Well, they’re telling me my child’s high-functioning to the point I don’t need anything, but we do. At home, I can see.” And I will have people say and even feel like nobody believes them, to that point, well, they’re fine now, they’re high… So I think either way, it points back to the work that we do, which is we’re not, and again, I don’t mean this in an unkind way, but we’re not interested in labels like that.

Dr. Sheely: We’re not interested in the labels. We’re interested in the unique individual. And people who are dealing with autism are the same as you and me. We have a unique presentation and part of that unique presentation is that we all want the same things, but we’re all different, and understanding that gives us the ability to look carefully, like where we get started and how we move along once we’ve gotten started.

Kat Lee: A lot of our program because it considers the unique child or adult, if an adult comes to us, and a family, which is so important, and I continue to urge professionals along with myself, along with everybody who works with families to not put words in their head that they have a hard time erasing. I think it just impacts you so much as a parent, and you know, I’ve told you our story before. More than once that we were told our son would never be able to do anything and that we needed to look after our daughter. It’s almost a quote sitting across from the desk. Again, I think someone who felt like he was protecting our daughter. Our son was lost to us but not our daughter, so focus on that. And those things, as a parent, you have to un-hear, so to have somebody say, “Look, your child’s low-functioning. We’ve done these tests. You need to accept.” To overcome that, to un-hear those things, is very hard.

Dr. Sheely: I can’t imagine, honestly, I can’t imagine what that’s like. Because the first time you hear something and you believe it, then you have to accept that there’s something else that’s true and that’s not true, and it’s really harder to believe that that’s not true, and this is true, than to believe what you’ve heard the first time is true. It’s very hard to change that pattern of thinking, and I hate it when I hear that that’s happened. In the beginning, and I like to talk to families and young people about their own diagnosis. It is an inefficiency model of the brain. Your brain is really efficient for some things and I could talk to them about something they were really good at, and so then being able to talk about vulnerabilities and where are our points of being vulnerable that we need to be thinking about. Those things, everybody has that. Everybody on the spectrum has that and everybody who’s not on the spectrum has that. And when we can think about it that way, we’re not looking at a person who has autism as another, a different. We’re saying, well, we’re all in this human race together and how do we move forward together? How do you help me and how do I help you? 

Kat Lee: I love what you would say to that individual student and I think about also saying that to parents when they’re observing that whatever it may be, that their child is exceptionally good at, I for sure would not be good. That it’s good to spotlight that because all of us have different brains and that’s an area of strength, but we have these other areas that we need to reinforce and help and help develop, and I think it puts such a… So many times, again, our eyes serve to focus on some negativity, some, okay, this isn’t happening, this isn’t happening. But other things are happening and those are things that we can be grateful for, but I don’t think we hear that that often.

Dr. Sheely: I don’t think we do either. And if I could interject something else here. I was talking about being good at something, but you know, sometimes people aren’t good, sometimes they don’t have that thing that they’re good at, and I think we have to understand that those people can get good at things, but I’m also understanding that there’s a uniqueness in everybody, and someone who doesn’t have an edge like that in something that they do is going to be just as capable of moving forward. You know, I think sometimes, Katherine, that we do the best we can, and we have a tendency to look at someone who’s not responding in the way we expected as being un-capable, incapable, of doing it. But I guess the way I think about it is, I really didn’t think through how to work with you in the right way. So we need to take that responsibility on ourselves when it doesn’t go well and say, “I need to rethink this again.” Because I know you’re capable. Usually, we would be saying this to parents, “We know your child’s capable, we just have to figure out how we can get that guiding relationship point with you and what that’s going to look like when you do it.”

Kat Lee: Well, that’s so beautiful. And I think it’s also really helpful for parents, however, their children have been labeled. I think one of the messages from us, is to try not to listen to those well-meaning people when it comes to labeling your child, but go with your gut. That’s one thing that I really wanted to end on. It’s why we know parents are the best guides. And as a parent, it’s not hard, and I’ve told you this before, for me to be all the way back 28 years ago to my little boy is two, and know that wasn’t right in our gut about him, who we knew, both of us. We both had spent a lot of time with him in the two years since he’d come to be with us. And we just knew that wasn’t true, but that can be so hard when people more educated than you in a certain area, or just been in something for 20 years or whatever the case may be tells you that. But I just wanna tell people, as parents, you know your child best, right? 

Kat Lee: And thank you for joining us for Autism: A New Perspective, the podcast show where we help you understand what is going on in the mind of your child, and we always encourage you that growth for your child is possible. I’m Kat Lee, see you next time.


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