Brain differences such as autism, ADHD, and dyslexia are not something to be cured, but something to be embraced as part of human diversity. This is the view of “neurodiversity,” a term coined by Australian sociologist Judy Singer in 1998. The neurodiversity movement stresses a strength-based reevaluation of formerly negative medical diagnoses, and it works toward greater community awareness and inclusion for all. So, sure, neurodivergent kids have atypical ways of navigating the world, but that’s part of what makes them special.
In the video above, Singer and Lawrence Fung, MD, PhD, a psychiatrist specializing in autism and director of the Stanford Neurodiversity Project, speak with moderator Micaela Birmingham about neurodiversity in all its forms. In this installment of Scary Mommy’s Live.Work.Thrive series, created in partnership with Fatherly, they discuss why neurodiversity is important to embrace at home, school, and in workplaces, how to navigate atypical behaviors in public, and how to advocate for more resources for your neurodivergent child in school.
The following has been edited for length and clarity.
Dr. Fung, there are a range of medical diagnoses that could fall within the category of neurodiversity. Could you describe some?
Lawrence Fung: Those conditions include autism, attention-deficit/hyperactivity disorder, dyslexia, or dyscalculia, a problem with doing calculations. And it doesn’t stop there. For example, epilepsy you can also consider as a neurodiverse condition.
Judy Singer: May I add two more? One of them is Tourette’s syndrome, which is quite common. And stuttering, which is a speech disability.
Can you tell us a little bit more about the neurodiversity movement and how it relates to social justice?
JS: Basically, it came out of the autistic self-advocacy movement. And the movement is just a thing whose time had come. I thought of it as something in the mold of the feminist or the gay movements. It’s a leaderless movement. No one’s telling them what to do. It’s an evolving movement. The definition of neurodiversity itself is changing; some people have different ideas of what it means.
Judy, you describe yourself as one of three generations of Singer women somewhere on the autism spectrum. How did your experiences as a child inform the idea of neurodiversity?
JS: It began with my mother, because she was not like anyone I knew. She would’ve had tremendous struggles to be normal. Actually, my work became famous in an article in an academic book called, “Why Can’t You Be Normal For Once in Your Life?” I used to say that to her a lot. My father used to say it to me sometimes. Why can’t you just be like the other girls and have friends and get married and be a doctor and go to university? What’s so difficult?
I was always an outsider. And I’m actually dyspraxic. So in Australia, it was just horrible because sport is so highly valued here. I was always last to be picked on teams and humiliated by Phys Ed teachers. But I was safe in the classroom because I was a good student, whereas other people, like dyslexic children, they went through absolute horror. And that is what we are hoping to change.
Dr. Fung, as a father of an autistic son, how did you handle the parenting challenges that came your way?
My mom, she passed away a couple of years ago, but she taught me a lot. She didn’t go to college. She barely graduated from high school. But what she told when my son was first diagnosed and was going through a lot of challenges, she told me to love him more. That sticks in my mind.
Essentially, we give him all the opportunities that we can think of that could be helpful for him. It is not easy for him. When he was first diagnosed when he was 4 years old, he didn’t speak. I wasn’t quite sure how he was going to handle school, how he was going to make friends. Over time, with all the opportunities that we gave him, he gradually went from needing one-on-one aid when he was in kindergarten to in middle school, he said, “I probably will be fine.”
I still remember some doctors said it was going to be a tough ride for him in middle school because he was going to need to go to different classrooms and he was going to be confused. But we had faith and we loved him and we just tried our best to give him the best possible help when he needs it. And now he is 17 and is applying to college. He still needs some assistance here and there, but he’s by and large a decent student. When he was 4 years old, I couldn’t think what the road was going to be like. The trajectory is very different from one person to the other. But one thing that is the same: Parents love their children. But parents, you need to love your children more.
Dr. Fung, did your child ever struggle with behaviors in situations where others were not equipped to be supportive? What happens when you’re in Target and you’re getting judgmental looks from other people who don’t realize what your child is experiencing?
LF: When my son was 2 years old, we were visiting family in Canada. And definitely my family was looking at me and saying, “What are you doing with our new family member here?” It seems like the parents of neurodivergent children usually are the targets. People think the parents are not doing the right thing for the child, and that’s why the child is misbehaving.
A lot of the families in my clinic, they have similar problems. And sometimes the unfortunate consequence is that they move away from public places and they’re scared that they are going to be stared at or even said something to. That’s going to be not very healthy over time if they aren’t going to public places.
There are certain conditions that, say, ADHD, for example, when the child is having the hyperactivity and the impulsivity in public places, definitely there could be things you really cannot do too much about behaviorally. And sometimes, these kids can respond to medications quite well, and they can have better behavior in the public places. But sometimes it is not related to hyperactivity or impulsivity. It’s just how the child is behaving differently socially. This happens with a lot of kids on the autism spectrum; they don’t understand the social world so much. When they get to a restaurant, they may do things that are not understood. They’re misunderstood by others.
For children, especially smaller children, this situation is easy to handle. A lot of the time the parents can explain to others that “My son is on the spectrum, please pardon us.” Then everyone is going to be very loving and maybe try to help. But if you stay silent and walk away, that will not help. That would only get other people to think, “This was another bad parent. For whatever reason, they cannot handle their child.”
JS: My daughter, when she was getting bullied in school and people were thinking she was odd and strange, an autism society came in and they gave a class about autism and what Ellie had. And it changed things. The biggest bully became her greatest protector.
How do you tell the difference between symptoms and annoying kid behavior? How do you, as a parent, distinguish when a kid needs a little extra love and support versus when you need to shut them down because they’re being annoying?
LF: Figure out if the challenging behavior is only happening in a particular setting, like at home versus both school and home. If it’s happening all the time, then the chance for it to be ADHD is higher. If it is affected by the environment, it is potentially not because of ADHD. That’s a very general way of thinking about it. If you have the condition, the condition doesn’t go away if you step into a different setting.
Another thing is the timing. Some kids with ADHD take medications, and by the end of the day, the medication will wear off. Then they’re not able to do what they would do better sooner after taking their medication.
Has training improved or expanded for teachers in the realm of neurodiversity?
LF: A lot of the methods that teachers are being taught for special education, if they are trained with special education, is to figure out what’s wrong and try to fix it. It’s like the medical model of trying to find the symptom and then finding a cure or a treatment for it to make things more normal. The neurodiversity paradigm is different. We are embracing the strains of everyone.
For example, a lot of the time in teaching kids how to understand essays and so forth, they need to see the big picture. This is something that kids on the spectrum are not very good at. But they can be very good at details. And there are some subjects that are really about details. If you want someone to know all the details, the child on the spectrum is going to know them.
In the educational setting, using the strength-based approach has been a challenging call. If the child is not going to have opportunities to be viewed in a more positive way, then teachers will not see the good side of their neurodivergence. I think there is a need for the local school districts and maybe the state, or even the federal government, to invest in children based on their strengths.
Judy, can you think of any examples, perhaps with your own daughter, where she had a strength that was far more advanced than a neurotypical child might have had in that situation?
JS: I just let my daughter do what she’s good at. My daughter is now 34, and she is good at young adult fiction. She has read every book that’s ever been written. She’s got a blog that everyone follows. My daughter, well, because of COVID, there hasn’t been much work. And the work situation has not been good for her. But it hasn’t particularly bothered me because we have a fairly reasonable disability pension here. There’s no pressure. And my daughter has found the things she loves. She loves musical theater. She dragged me into it. Now we’re both into musical theater. She belongs to a writer’s group. And finally, she has found a permanent job that uses her reading and writing skills.
Dr. Fung, tell us about your research that focuses on specialized employment programs aimed at higher retention rates and quality of life for neurodivergent people. I’m guessing this has a lot to do with this strength mindset?
LF: This is a special initiative of the Psychiatry Department at Stanford, and we call it a strength-based model of neurodiversity. We use that as the organizing principle to teach stakeholders about how to make the workplace more neurodiversity-friendly. We believe that it is not only important to teach the neurodivergent individual how to work. It is equally important for the employers to embrace neurodiversity. Because neurodiversity is a powerful thing. When people have different kinds of brains, different minds, you have innovation. With different perspectives, you can crack the problems at a different level.
People on the spectrum can save companies tens of millions dollars. Neurodiversity can be considered a competitive advantage. So it’s not only good for the company to think about hiring neurodivergent people as a matter of social justice, but it’s also about their bottom line. By having neurodiverse individuals in their midst, they can increase productivity and innovation. This is how we explain it to companies.
Once we are able to find people on the spectrum who know what they’re passionate about, we help them find work and level the playing field and get hired. In terms of interviewing, we make sure there are accommodations. A lot of the time when neurodiverse individuals are struggling to get a job, it’s not because of their qualifications. Sometimes it’s how the interview is conducted; if the company interviews in a way that is anxiety-provoking, then the individual’s performance in the interview will not be as good.
We want to take that away. We make sure there is enough understanding of what the interview will look like. And if it looks like it’s going to cause too much anxiety, we need to level the playing field by making changes. Many companies are willing to work with us during the interview phase. And after they find the right person, we continue to help the company and the neurodivergent individual through ongoing support when they’re at work.