Once a child is diagnosed as autistic, their parents tend to become overprotective. In some ways, it’s good that parents of autistic kids often become so involved. It can help their children get the support they need early in life to grow and thrive. But some parents take it too far. They don’t push their autistic children to develop a wide range of skills because they have a fear of letting go.
Temple Grandin, PhD, one of the world’s most respected experts in the field of autism and subject of the Emmy and Golden Globe-winning film that bears her name, wants parents to rethink their child’s autism. Rather than focusing on the diagnosis and the child’s limitations, she wants them to see their child as an individual with strengths. She wants parents to push their autistic kids to develop non-academic skills that will help them in the real world.
In the video above, Grandin and Debra Moore, PhD, a psychologist who has worked extensively with autistic children, teens, and adults, speak with moderator Micaela Birmingham about rethinking autism. In this installment of Scary Mommy‘s Live.Work.Thrive. series, created in partnership with Fatherly, they discuss how parents’ mindset can impact how kids on the spectrum learn and grow, diagnosis and labeling, and how these can work for and against our kids, the importance of life skills for children on the spectrum, and how you can pair interests and strength to help them thrive.
The following has been edited for length and clarity.
Dr. Grandin, can you tell us a little bit about your childhood, and when you were first diagnosed as being on the autism spectrum?
Temple Grandin: Well, I was born in 1947, so doctors didn’t know very much about autism. When I was two and a half years old I had no speech, and all the symptoms of classic autism, and mother took me into a neurologist. I was diagnosed as brain damaged, but she made sure I was not. Then, I went to a very good speech therapy school that two teachers taught out of their home. And then a little later on, when I was about five, then they put the autism label on it. But I had the classic symptoms.
Dr. Moore, how does the experience Temple had compare to today’s methods of diagnosing children?
Debra Moore: We’re more aware today, but it still depends on where you live, what kind of community you’re in, and what kind of resources there are. We’ve got a long way to go yet. When I was in graduate school, we were told we would never meet a child with autism so we didn’t really need to learn too much about it.
TG: The thing about autism is it’s very variable. Elon Musk, he’s told everybody on Saturday Night Live he’s autistic. And then you have some that remain much more severe, they never learn to talk. And there’s all different levels in between.
There are many different types of minds out there, and they all have their strengths. Dr. Grandin, I think you said, and this really stuck with me, the world needs all types of minds. And while there is a lot of emphasis on STEM thinkers right now, this may be leaving behind some kids who think differently. Can you explain a little bit about why you think that?
TG: I’m an extreme visual thinker — scientists would call that object visualizer — because everything I think about is a picture, a full realistic picture, like a PowerPoint slide or like little short videos. Another kind of mind is more mathematical mind — that’s the visual-spatial. They think in patterns. So there’s the math mind, and then the art mind, and then a lot of people are mixtures in between. Then you have the verbal thinker, who thinks completely in words.
These different kinds of minds have complimentary skills. Let’s look at something like Zoom. A visual thinker makes the interface, but the mathematician has to make it work. You need to have both. Like right now I’m working on another book on visual thinking, I’m working with my super great co-author Betsy, she’s totally verbal. I write the first draft, and then she rearranges it in the most beautiful way. I just don’t know how she does it. That’s different minds working together. She knows how to organize in ways that I don’t, but she wouldn’t be able to do the same source material.
Dr. Moore, I’d love you to explain a little bit about this concept of mindset. I know your book is really focused on several different mindsets, but how is this an important way to look at the autism spectrum?
DM: I think the commonality between all the mindsets is that we want to look at the entire child. The label of autism is simply a part of that child. There’s lots of other pieces of personality, of temperament. And if you forget that and you overemphasize the autism, well, number one, you often will overemphasize deficits, because that’s kind of the definition when you think of autism and the diagnostic criteria. They’re not pointing out any of the strengths. They’re only pointing out the challenges, but there are just as many strengths. So the mindsets keep coming back to that concept. Think about the whole child, build those strengths, expose that child so that you can find those strengths, prepare that child for the real world, and do it in a way that talks the language that that child thinks in.
TG: I think we’ve got to expose kids to lots of things. I get asked all the time what would I do if I could improve the schools. If I could do one thing, I’d put all the hands-on classes back in: art, sewing, woodworking, cooking, theater, wood shop, auto shop, and welding. My school had theater when I was in elementary school. I wasn’t interested in being in the play, but I made sets and costumes. Set designers and costumes, that’s something that can turn into a career. This is why it’s so important to keep these things. I think taking them out of the schools is one of the worst things that schools have done.
DM: One of the things that Temple and I come back to also is the dangers of video gaming and the internet, because you’re not going to be learning the tools and making things if you’re sitting in front of a screen all the time.
We asked some members of the Scary Mommy Community to respond from a quote from you, Dr. Grandin, where you said, “The most important thing people did for me was to expose me to new things.” In response to that quote, we have a question that was submitted: “My son resists everything new that I try to expose him to. It’s almost meltdown-inducing, so I worry that the struggle will be more stressful than the reward I’m hoping he will gain. How do I decrease the meltdown probability, and increase the desire for that reward?”
TG: Give a choice of the things to try, that’s something that will help. The other thing is we have got to watch out for sensory problems. I was really sensitive to loud noises, like a school bell going off. One of the best ways to have gotten me over that is when school is not in session, to go down to the principal’s office and let me just press the button and press the button. Because sometimes you can get a child over being afraid of a noise like that if they can initiate it. Same thing with the buzzer on the scoreboard in the gym, hair dryers, vacuum cleaners, any of those noisy things.
My mother always gave me choices of activities, it’s important to stretch these kids. You don’t just force them into a super loud Walmart. If the child is having a meltdown at Walmart, let them have control. Take them there when it’s not busy, and maybe when they do this hand signal you’ll take them out, or if they’re visually sensitive and they hate automatic doors, then take them over there when it’s not busy and let them play with the doors where they control it. That’s one of the keys on helping desensitize some of the sensory problems.
In discussing some of these fears or sensitivities, we see children who have repetitive movements, or have hyperfocus on certain things. Neurotypical adults may find this challenging in some situations. What advice would you have for parents in these moments when they’re really struggling?
TG: I used to do some repetitive behavior when I needed to calm down, and my mother would give me a time and a place to do it, like after lunch in my room, or else I wind up swinging, spinning around it, those sorts of things. Then there’s some individuals that are nonverbal who can’t actually control the movements. Is there a sensory issue? What exactly is going on here? Is it repetitive behavior to calm down, or is it a nonverbal individual that can’t control their movements?
DM: One thing I would say is, if possible, and it’s not always possible, you want to distinguish between is this behavior a communication of a stress, or is it a self-soothing behavior? Because you’re going to react very differently to those two things.
TG: Well, the other thing on meltdowns, I kind of go through a checklist on this, the first thing I got to rule out, especially if the individual is nonverbal or partially verbal, is there a hidden, painful medical problem? A tummy ache, an earache, acid reflux? Is it happening in a noisy, chaotic place? Then the other big thing is frustration with not being able to communicate. I can remember the frustration of not being able to communicate. You’ve got to give a nonverbal kid a way to communicate. Some people are teaching sign language. There’s fancy communication devices. There’s a piece of cardboard with pictures on it. But they’ve got to have ways to communicate.
And then there’s some that are purely behavioral. I remember pitching some fits just to get out of doing something, or pitching a fit to get attention. But I want to rule out sensory communication, and painful medical problem first.
You’ve described in the past how labeling at a very young age may keep parents or physicians from recognizing or encouraging the unique skills and strengths that a child has. Could you speak to some of the dangers of these labels?
DM: We need the labels because we need to get the resources, and you can’t get the resources if you don’t have a label. But once you have that label, you have to remember it’s the same child that you had before you got the label. Nothing changed. It’s scary. It’s hard for a parent. But get your resources in line, and then get back to who that kid is. What do they like? What do they enjoy? What are they interested in?
I imagine there would be some situations where this label could actually be a relief to explain some of the past struggles that they may have had, whether that be in relationships or making friends or other parts of their life. Is that something you’ve seen?
TG: That’s especially true of adults who are fully verbal. They’ve gotten out and they’ve got a job, but their relationships are going bad. That’s where the label does give a sense of relief, because now they know why they’re socially awkward.
But what I’m concerned about is I’m seeing too many kids where they’re not learning basic skills, not learning shopping. They’re not learning things like ordering food in restaurants. The other big thing is working skills. To have a good transition from teenagerhood to adulthood on a fully verbal end of the spectrum, they need to hold down two jobs before they graduate from high school. I had a lot of work experience. My mother got me out to my aunt’s ranch. I was painting signs and selling them. I spent three years running a horse barn in our school. Didn’t do any studying, but boy, I learned how to run a horse barn. I really was good at cleaning stalls. I’m realizing now that learning that work skill was just so important: being on time, I was responsible, feeding them correctly, putting them in and out.
What advice would you give for parents to help their children stretch? You hear these stories where the doctor will say, “Oh, he’ll never be verbal,” or “She’ll never go to college.”
TG: That’s way too pessimistic. You’ve got to stretch. We don’t chuck them in the deep end of the pool. You’ve got to gradually stretch doing new things, giving choices of new things they could try. When I was 15, I was afraid to go to the ranch. My mother gave me a choice: I could go for a week and come home, or I could stay all summer. I got out there and I loved it. You’ve got to get them out trying different things.
So baby steps, giving them choices.
TG: You do it in small steps. Let’s say we go shopping. I had a 12-year old girl talk to me at one of the airports, and I found out from her mom she never shopped. I pulled $5 out of my purse and I said, “Go over to that store across the hall, and buy something.” We could see the door; it was just across the hall. She went and bought a drink, brought it back, and gave me the change. That was her first shopping. I’m recommending those kind of baby steps, and then gradually increase it. But I’m seeing some moms that have trouble letting go.
DM: Don’t be afraid that your kid’s going to not be able to do something. Let them try anyway. It’s fine to fail. That’s how we learn. If you’re not letting the kid fail, you’re probably not pushing hard enough, because that’s just going to be part of learning new behaviors and new skills. Dads tend to push a little bit more and be okay with that. Moms get really used to protecting when the kid is younger, and sometimes they keep doing it even though the kid’s kind of outgrown that.
Check your anxiety at door, because if that’s what’s holding you back. You could be confusing that with your child’s anxiety. Maybe your child is not as anxious as you are, in which case that’s kind of a disservice to your child. I’ve had to work with moms as much as I’ve had to work with kids. Their anxiety was sometimes what was holding them back, not the kid’s.
What is some advice for parents who have a neurotypical child, when they’re in an interaction with a child who may be on the spectrum? How can one child help support the other?
TG: In the 50s, they used a method of parenting that I’ve named “teachable moments.” We’d sit down at the dining room table, and when I made a mistake, like sticking my fingers in my mashed potatoes or picking up meat in my hand, my mother didn’t scream. “No,” she’d say, “Use the fork.” She’d give the instruction, and if I went over to the next door neighbor’s kids house for lunch, the next door neighbor mom would give the instruction. In the 50s, grown-ups corrected little kids, and they didn’t scream at them. They’d tell you what you should do, one specific example at time. One specific example at a time of teaching manners. And the same thing in the workplace: a boss needs to pull an autistic person aside and say, “No, you can’t tell John that he’s stupid. You’re going to have to apologize for that.”
Also, in the workplace, you need to be very specific about what they’re supposed to do in their job. It has to be clear. Don’t just say, “Straighten up the store.” You need to tell them, “You’ve got to make sure that the price of the shampoo is on the scanner and matches the label that’s on the front of the shelf.” That would be an example of a specific instruction.
When a child is falling behind milestones, what is the best way to advocate for early intervention?
DM: I would encourage moms who take their kid to the doctor, and if the doctor says, “Oh, Johnny’s not talking, but you know, he’s a boy, sometimes boys don’t talk, and let’s wait and see.” If mom feels like in her gut, “No, this isn’t right,” I’ve learned to trust moms. I’ve had too many clients who were told, “Just wait.” And they just wasted a year, and you can’t get that year back. So my advice to moms is, is trust your gut. You’ve got to be your kid’s advocate. It’s hard, and it’s tiring, but you can’t rely on the professionals all the time.
TG: But the other thing is, I’ve seen moms overprotect. I’ll never forget a mom who had a 16-year old boy, fully verbal, and I suggested that he go to the store and buy something. And she says, “I can’t let go.” Fully verbal, good student in school, had never gone shopping. This is where the moms are getting too much into the label and not seeing the kid. I’m looking at the kid and I’m going, “Well, he looks like he ought to go work for one of the tech companies. He needs to learn how to do shopping.”
DM: One point is that there’s an assumption that because your child’s autistic, there’s this umbrella answer. There’s not. It really depends on each child. That’s the point of emphasizing mindsets. That’s the point of emphasizing that you’ve got to see the whole child. Again, what’s right for one child maybe totally wrong for another child. It doesn’t matter that they both got the exact same diagnosis. They could have the same five diagnoses, the same level of functioning, and still have very different needs. One child can have very different needs when they’re five versus when they’re five-and-a-half or six. Things change developmentally, environments change. I know we all want nice answers, but you’ve really got to know your child. You’ve got to get down to very specifics, and that applies to clinicians, to teachers, and to parents.