‘Bake Off’ Star Lizzie Acker on Showstopping Cakes through Neurodivergent Eyes

Episode Transcript

Dr. Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa.

Dr. Nath:
And I'm Dr. Audrey Nath.

Dr. Correa:
This is the Brain & Life podcast.

Dr. Nath:
Today we're going to be talking about baking and learning disabilities. Daniel, are you ready?

Dr. Correa:
Yes, I'm ready.

Dr. Nath:
We had a mailbag question from a listener about this. Daniel, do you have it?

Dr. Correa:
Just so great to get questions to really address what you guys want. We heard from one of our listeners, and she asked us, "I hope you air a podcast about people who have been diagnosed with learning disorders as adults due to previously unknown congenital issues or brain injuries, thereby explaining the reason for their earlier struggles with math, reading, following executive skills, et cetera. I obviously have a personal interest in this and would love to hear what other people have experienced because of this issue and what they have done in school, the workplace or social situations to help them with their deficits". Thank you, Kristin, so much.

Dr. Nath:
So this has been on my mind as well. I recently saw a patient who had a left parietal tumor and some problems with math and writing, which can be associated specifically with left parietal tumors in a syndrome called Gerstmann syndrome. And so that's an example where her school had no idea and she had no idea that maybe she was struggling with some of that because of her tumor. This does happen, Kristen, so I'm really glad you brought it up.

Dr. Correa:
In so many different ways too. It's not just necessarily a learning disability or a cognitive disorder, sometimes it can be even from an injury or from a process like a brain tumor. Such an important topic for all of us to learn more about, especially also now that more adults are being diagnosed with this later in age.

Dr. Nath:
Absolutely, we have more awareness and more testing.
For today's episode, we will be speaking with Lizzie Acker. She was a contestant on the Great British Baking Show, and we talk all about how her learning differences came into play with baking, how she tends to rely a little less on the recipe and more from other sensory inputs, like feeling the texture of the cake to know if it's done and how it smells and how it looks. And she talks to us all about her showstopper that was her way of expressing what it's like to have learning differences with ADHD and dyslexia.

Dr. Correa:
She even gets into how she had applied her learning and challenges and skills to working in the show and in her life.

Dr. Nath:
Absolutely. I mean, she's working on a cookbook for kids with learning differences, specifically to have the kids use more of their other senses to the textures and smells and how things look, to help make wonderful baked goods. And, after that, I spoke with my former program director, David Urion, who is a behavioral neurologist, all about the history of how we started diagnosing ADHD and treating it, because he remembers those days before we had treatment.

Dr. Correa:
Sounds like we should all pull out a cupcake recipe, listen to the episode and get cooking. But in the coming weeks, stay tuned. Our first February episode, I'll be interviewing Dr. Joseph Jebelli. He's the author of "How the Mind Changed", and talks about the healthy human history of how our brains have evolved. And then he also had previously written a book called "In Pursuit of Memory: The Fight Against Alzheimer's", where he shares his family's experience with Alzheimer's.

Dr. Nath:
And on February 9th, we'll hear my interview with Cameron Boyce's parents, Victor and Libby Boyce, talking about the celebration of their son's life, as well as sudden unexplained death in epilepsy.
So today my loves for baking and reality TV and incredible stories from divergent people are all coming together. So if any of you watch the Great British Bake Off, Lizzie Acker, from Liverpool, England, made it past all of the screening rounds and all of the auditions, and she was selected as a contestant on the 2021 Bake Off season. Her apple pie brandy snaps were alouded as a lovely mouthful from judge Prue.
But something I didn't realize when I was watching the show is that Lizzie overcame multiple learning issues, including ADHD and dyslexia and dyspraxia, and I wouldn't have known that from watching her beautiful painstaking work on the show. So today we are beyond psyched to have Lizzie with us on the show to tell us her story of finding her way in life and rocking 'Bake Off' through neuro-divergent eyes. You will always be our star baker here at Brain & Life. Welcome to the show, Lizzie Acker.

Lizzie Acker:
Hi.

Dr. Nath:
First off, this is kind of a 'Bake Off'-related question. For those who watch the show or don't watch the show, there's different parts of the show where they have different challenges of things to bake, and one of the segments of the show is a technical challenge where they have to bake some really hard thing with these kind of obscure instructions, and the instructions are written and you have dyslexia. How were you able to work with that or did you get any accommodations?

Lizzie Acker:
So I had pre-talked to the producers because they have a safety psychologist person that if you've got any worries, you talk to her. And obviously, when I applied I said one of my main worries is reading out loud, because I hate reading out loud anyway, they make you read the instructions, so everyone reads them, filmed, so they can add bits in. They'll have one person saying, "Oh, it's at 160", and one person saying, "Fold the ingredients".

Dr. Nath:
Oh, you guys record that? I didn't even realize that.

Lizzie Acker:
Yeah.

Dr. Nath:
Oh, okay.

Lizzie Acker:
They'd made an exception that the producers would be able to read for me if I couldn't read any words, but also my font was bigger.

Dr. Nath:
That's an easy thing to do. That makes sense. Yeah.

Lizzie Acker:
Yeah. And it was that dyslexic-afriendly font.

Dr. Nath:
Ahhh. Did you have to educate them about that or did they know?

Lizzie Acker:
Yeah, so I had to ask them what font to put it in and stuff, because that's the font that I found easiest to read in.

Dr. Nath:
I'm glad that you did that. Use the font that works for you. And I'm really glad that you educated them about that, like this is the font and here's why. Because I think a lot of people just wouldn't think of it. It was an easy thing to accommodate, but people wouldn't think of it if you hadn't brought it up. Going back to when you were a kid, when were you diagnosed with ADHD and dyslexia?

Lizzie Acker:
So I was first diagnosed with dyslexia, and that was in primary school. And then later on I was diagnosed with ADHD and then dyspraxia. So I think it was a lot easier for me to be diagnosed with ADHD and dyspraxia because it was already diagnosed with dyslexia.

Dr. Nath:
It's interesting that the dyslexia diagnosis came first for you and ADHD later, and we do see that, especially amongst girls, that the ADHD diagnosis doesn't necessarily come as quickly as it does with boys. Back when I was a kid, and even still now we still see some later diagnoses for ADHD amongst girls. What did your ADHD look like?

Lizzie Acker:
So my ADHD in school was both ends of the spectrum because it depended how hyped I was.

Dr. Nath:
Okay.

Lizzie Acker:
And in what situation. Like, if I was completely overwhelmed, I would space out massively and stuff. When you look back though and you think about all little things, even down to... obviously I was diagnosed with ADHD at about 15.

Dr. Nath:
Okay.

Lizzie Acker:
So when I went to uni, I was 19 and stuff. So I'd known I was ADHD for a while. I didn't think I was affected by ADHD.

Dr. Nath:
Were you in denial, did you think? Did you just not want to be?

Lizzie Acker:
No, I just think that I'd never really noticed any behavior things, because no one really spoke about it. There was no TikTok that was like, "Oh, this is a symptom, and this is a symptom, and this is what you could do as well".

Dr. Nath:
Yes.

Lizzie Acker:
So there was no communication about what ADHD was to people.

Dr. Nath:
But clearly you have a lot of strengths. I mean, with the kinds of bakes that you were able to do, these really complex recipes that you were able to remember all the stuff and do it under the gun with cameras watching everything that you do. When did you discover that there were things that you were really good at and start to take pride in that?

Lizzie Acker:
So I don't think I did before 'Bake Off', that's the thing. So I had a friend, because I don't think you actually get in America, we have Bake Offs and Professionals. The first ever season of that, about 10 years ago, one of my close friends was on it. So he is a patisserie chef, and over lockdown he was like, "You need to apply. You are really good. Go for 'Bake Off'". And I was like, "Oh, no, no". And he was like, "Come on, you can do this", and all this. And I'm like, "Oh, don't know whether I can be bothered". And he pushed me to do it.

Dr. Nath:
Good.

Lizzie Acker:
Which is amazing, because I know people go on the show and they say, oh, this is the proudest I've ever been and stuff. But that cake that I made, I've never been proud of any grade that I've gone through.

Dr. Nath:
Which cake are we talking about? Is this your big showstopper that celebrated your special education needs?

Lizzie Acker:
Yes, so that cake...

Dr. Nath:
Yes. Let's talk. We should talk about this cake. For people who have not seen 2021 'British Bake Off', for one thing, just go watch it's great, but she had this showstopper cake that celebrates her differences and her SENs, or special educational needs. And there's some fuzzier aspects on the sides with the icing that represented that brain fuzz and different experiences that are really unique to you. How did you even come up with all of that?

Lizzie Acker:
It wasn't even coming up with it. You know what it was? When you're on 'Bake Off', the producers ring you up and they say, "What are you going to bake for that week"? and "Have you got any ideas"?, as you're trying to build your recipes. And when I was trying to explain it to them, they were like, "Oh, it's gluten free". And I'm like, "Yeah". I was like, "But gluten free people are special in the way that they're gluten free". I was like, "I can't relate to that. I'm not gluten free". I was like, "The way that I'm special..." I was like, "I've got special needs".

Dr. Nath:
I see.

Lizzie Acker:
I can talk about that. And they were like, "Okay", and just kind of let me just do what I wanted.

Dr. Nath:
So they couldn't picture it, I'm guessing.

Lizzie Acker:
No.

Dr. Nath:
But you could.

Lizzie Acker:
Yeah.

Dr. Nath:
You had the image in your mind, I'm sure.

Lizzie Acker:
And the thing is, so we lived together for six weeks in a hotel, and the way it was filmed, they filmed an episode in two days, and then we had two days practice, and then we'd film another episode in two days. So it was really, really intense.

Dr. Nath:
Yeah.

Lizzie Acker:
And with my ADHD and everything, once I'd concentrated for so long on them two film days, I could not practice. My attention span was not there. I was not having a good time.

Dr. Nath:
I can see that.

Lizzie Acker:
So none of them practice bakes were ever any good. Everyone was so worried. And when I actually finished the actual cake in the real tent, the home ecs were crying, came up to me and they were like, "I've never seen anything like it. It's beautiful".

Dr. Nath:
But that's the thing, because you had a unique perspective that other people don't have and sharing what it feels like to be in your brain through a cake or through talking about it. I mean, that reaches so many people in a way that maybe wasn't there when we were kids, in the eighties and nineties. We didn't hear about this, but to have this be on a cake and visible and you explaining it to everybody. And Keira Knightley, she watched it, the actress.

Lizzie Acker:
And she cried.

Dr. Nath:
And she says that she cried at the episode because she could relate with her own dyslexia.

Lizzie Acker:
That's amazing, isn't it? It's so amazing that this random cake that everyone thought was be horrendous brought so many people together.

Dr. Nath:
It's incredible. I love that you were yourself, you stayed true to yourself. You didn't try to be somebody else, which is amazing. I love getting little details like this that I wouldn't have known otherwise.
I've heard something that you mentioned in another interview that because of your experiences with having ADHD and being neurodivergent as a child and not really seeing this represented so much, that you had an idea for a cookbook for neurodivergent kids. Tell us about that idea and how you came up with it.

Lizzie Acker:
So, because I never liked any sort of book when I was a kid, and I just thought there's no books... the book industry is very... it's like towards normal brain people.

Dr. Nath:
Sure, yeah. Absolutely.

Lizzie Acker:
And the pages even, them shiny pages, I can't read on them. The layouts of the page, the distancing of the writing, all stuff like that.

Dr. Nath:
Like the font and all that, right?

Lizzie Acker:
When I was a kid, I had no concept of time. I could only tell digital time, can't tell clock time. So in the book that I wanted to create, I wanted to say, especially like when you rest some bread, oh, you'd be able to put on a Disney film in between rest and that because that's the amount of time it takes bread to prove.

Dr. Nath:
As another measure of time. I see. For sure.

Lizzie Acker:
Different aspects like that, and especially so more tailored towards autism as well. Different smells so you can smell before you bake with and stuff like that. However, it is the worst nightmare of every book publisher and everyone I go to goes, "It's too niche of a market".

Dr. Nath:
I don't think it is with my patients. So if any publishers are listening to this, please make this happen. There are a lot of neurodivergent people out there.

Lizzie Acker:
Exactly. One in seven people is neurodivergent.

Dr. Nath:
Seriously.

Lizzie Acker:
So there was so much support in that 'Bake Off' tent. Maggie was amazing, so she took all the time out with me to... after week one I was a bit rushed and everything because she said, "Right, let's do all your timings. Let's work backwards". And she taught me how to work backwards in time so I'd be more prepped. Jurgen taught me never to trust proving times, always watch your bread, and if you look at your bread, you'll be able to tell and stuff rather than just going off this one, "Oh, prove for an hour", thing. He was like, "You've got..."

Dr. Nath:
So that's fascinating. It's like a multi-sensory approach to baking, which actually makes a lot of sense, as opposed to I will read this exact time and go by it. And I do that too when I make genoise sponge, I know it's done because when I press on it and let go and it makes a little sound. So I think people do this, but bringing some awareness to it is great and I think can help kids like you find that, wait a minute, okay, I have these challenges at school with reading this long paragraph. That's hard for me. But wow, I can excel doing this other thing with my different sensory abilities.

Lizzie Acker:
All the way through education, if you've got SEN, you're probably going to struggle and you're probably going to think I'm horrendous. What am I ever going to do? Can I get a job? And stuff like that. And you worry about it and your parents worry about it. So if you can go home and bake, at least you know you've got that skill and it's so encouraging. And if you think that you can do that, you can go on and you can try other things, that makes you try.

Dr. Nath:
Exactly. It's like this building steps of confidence. Well, I know we're going to have to let you go because you're busy, but please tell us how can our listeners stay involved with what you are doing, and if you write a book, how can people stay plugged into what you're up to?

Lizzie Acker:
So on social media, I'm @LizzieAcker_ on Instagram. I've also got TikTok, which @Lizzie.a.bakes, but if you just want a fun laugh, me and Freya have a joint TikTok, which is @Freya_and_Lizzie, and we just do stupid things like dress up, do stupid dances, ride tandems, and just do all fun stuff, because people needed laugh nowadays .

Dr. Nath:
Thank you so much for joining us, and can you tell us if there's anyone out there who's listening, whose child maybe was just diagnosed with ADHD or dyslexia, is there something you'd like to say to them that you wish you had known?

Lizzie Acker:
I would say your brain's fantastic and you just learn a bit differently, and you'll always think and come up with a more amazing ideas than anyone.

Dr. Nath:
Life without brain disease is possible, but not without research. For 30 years, the American Brain Foundation has brought researchers and donors together to fund research across a broad spectrum of brain and nervous system diseases and disorders, in the pursuit of improved treatments, prevention and cures.
To learn more about the learning disabilities that Lizzie told us about, I am thrilled to speak with pediatric behavioral neurologists and my former child neurology residency program director David Urion. He is currently the director of education in the Department of Neurology at Harvard Medical School, as well as Charles F. Barlow Chair, the Director of Behavioral Neurology Clinics and Programs within the Department of Neurology, and the co-chair of the Ethics Advisory Committee at Boston Children's Hospital.
So I brought him on because he was my program director and one of our favorite attendings back when I was in training. Welcome to the podcast David Urion.

Dr. Urion:
Well, thank you. Thank you. It's a delight to be here.

Dr. Nath:
First off, I know you primarily cook more than bake, but just curious if you have seen the British Bake Off Show.

Dr. Urion:
As it turns out, my sister is just an enormous fan of the show, and is herself a really avid baker, she's the one who got the baking gene in our family. And so I've actually been over at her house where a family gathering was actually interrupted and put on pause so we could actually watch the show. So yes.

Dr. Nath:
Okay, so you have seen the show. So Lizzie, while on the show, she did bring some attention to overcoming ADHD and dyslexia and dyspraxia as a child, and ended up creating this bake, this very whimsical cake that kind of described what her inner mind felt like. There's a lot of colors in it, as you can imagine. For our audience, can you tell us a little bit about what is ADHD, and why is it that we sometimes see ADHD along with other learning disabilities in the same person?

Dr. Urion:
So if we start with attention disorders, I think that this is a place where we're stuck with a name that it was given a very long time ago that really doesn't actually do justice to the issue, because when you say attention deficit, it sounds a little bit as if the tank is low, and if we could just go to the station and fill it up with a little more attention, we'd be just fine. I think it's better understood, and I think that the example that we show that it's a difficulty actually in modulating selective attention for various tasks.
So right now as I'm having this conversation with you, the heating system in my office kicked on and then there's somebody out in the hall who's nabbering on about something, not very far from my door, but I know not to pay attention, or my brain knows not to pay attention, to those things, because right now this conversation is really important. And so my brain, if asked afterwards, could sort of say, "Yeah, the heating elements came on, and yeah, there was somebody out in the hall, I don't know what they're talking about, but they were talking kind of loud, but right now I'm paying attention to this conversation". And so I think that that's a way of understanding it. It's a difficulty in modulating one's attention, in essence, sort of separating what's important and what's not. And so many people with attention disorders are kind of drawn to any stimulus that comes across the bow and have trouble, therefore, prioritizing in the moment what's going on.
On top of that, if I think about the day that I'm having today, this conversation was really important, I therefore made sure to set aside time beforehand so that I could be in the right place to think about this conversation, and a little bit of time afterwards so I can get out of this conversation and into my next meeting. I put those little white spaces in there, if you will, those little blank spaces...

Dr. Nath:
Planning. Yeah.

Dr. Urion:
...to do that. And so that requires me to be sort of planful in a way, that's often a challenge for persons with disorders of attention. Then often it's sort of, the third leg of the triangle is, that it can be associated with a kind of physical restlessness and hyperactivity, which is the H part of its name.

Dr. Nath:
Everything you described there, the ability to modulate attention and the physical aspect, these are all things that are really important in adult life in order to be functional. Just thinking back with my own babies in the beginning, we're not able to do any of these things, so in the brain development perspective, when do you start to see clear signs that this is different than what I would expect at this age. For ADHD, when do you think you can kind of reliably say that?

Dr. Urion:
Yeah, so I think it's something that really is most reliably detected in the early primary grades in school. Increasingly, we get children referred who are having some struggles in preschool environments. And a lot of that is, as you suggest, really developmental in nature and perfectly usual. I'd have to say that when a four-year-old male is referred to the office because they can't sit down at circle time in their preschool, the diagnosis I come up with is "Boy". But by the time one's in early primary school, then from a maturation perspective, the brain is beginning to do a whole variety of things, where we expect that somebody actually can sustain attention, can focus on various tasks, can sort things out. And while there's a great arc of that developing over the early primary years in school, I think we can first begin to suspect it in early primary school.
And certainly by the time that you're well on the way into primary education, around the second grade, perhaps the third grade, I think we can then really see that there are people who have started to stray from the usual developmental pathway, and therefore whom we have to think about and say, what can we do to try and make their way through school easier?

Dr. Nath:
Yeah.

Dr. Urion:
I think it's also important to emphasize in this context that context is incredibly important. Our post-industrial society puts a great value on formal academic education. There are other places and times in human history where in fact, that wasn't actually how one was raised.

Dr. Nath:
Even not that long ago here, even.

Dr. Urion:
So I think we have to understand that this exists within a historical framework and context, and therefore that's part of the picture as well.

Dr. Nath:
So it's not necessarily that there's this explosion of this abnormal brain activity that just happened since the eighties, but maybe that society and our expectations for children has been which has changed. You were mentioning how could we make the experience of the child better in school. We talk about therapies and we talk about individualized plans for kids. How do you approach that process in working with a family in the school system?

Dr. Urion:
So first I think it's really important having a fairly granular understanding about what's not working for the child in school. Can do that in a variety of ways. Structured questionnaires to teachers, conversations with teachers and families, but figuring out what's actually not working, because, obviously, that's where you have to apply some strategy that could be more effective.
So is it the fact that this child is too motorically restless to actually function effectively in the community of a classroom? Or do they have trouble maintaining themself on task for varying periods of time? Or do they have real struggles with what, for them, might be non-preferred tasks? There's a certain amount of all of our education that is eating your broccoli.

Dr. Nath:
And those are three very different struggles. Yeah.

Dr. Urion:
Exactly. And therefore you have to have a strategy. There's no one size fits all, and the strategy needs to meet what the challenge might be for that given child in that given setting. In the course of which, you can then say, well, we have to think not only about the child, but about the setting. Any kind of a learning difference exists in the space between the child and the world around them. It's not all child and it's not all world, but it's actually how it is they meet and how effective that meeting is. And so we know that for certain children with various kinds of attention disorders, there are some teachers who are lovely for other students, but disastrous for them. And there are some teachers who might seem dry as toast to other people, but are very effective teachers of some children with attention disorders because they're so very organized.

Dr. Nath:
So these are some ways that we can address optimizing the school experience. In addition to that, sometimes we need to go further, and some children do need some medication to help them with their symptoms. And can you tell us a little bit about medications, since this is something that comes up a lot with people, and what are stimulants, and why are we using them?

Dr. Urion:
Sure. So why we're using them is actually an interesting historical accident. So there was a physician named Bradley who actually ran a Milieu Therapy unit down in Providence, Rhode Island, a hospital that ultimately bore his name. He was a child psychiatrist. But he had a group of children who had been completely non-functional in life at large and were therefore in his Milieu Therapy unit. Children that we would now recognize as having attention disorders and other various kinds of learning issues.
And in the time, in the era, that he lived in, a lumbar puncture, spinal tap was about the only diagnostic maneuver that neurologists and psychiatrists had.

Dr. Nath:
Sure.

Dr. Urion:
And so one was done on all of these children.

Dr. Nath:
Oh, wow.

Dr. Urion:
Now as pre-treatment to avoid post-spinal tap headaches, at the time there was a belief that giving dopaminergic stimulants would be helpful.

Dr. Nath:
Okay.

Dr. Urion:
This is a black pearl, don't take this home kids. Actually it doesn't work. But at the time it was believed that it worked.

Dr. Nath:
But, by the way, this is fifties, sixties-ish.

Dr. Urion:
Oh no, this was back in the 1930s.

Dr. Nath:
Thirties.

Dr. Urion:
He published his paper in 1938. So they did this and we have no idea what it did for their headaches, but miraculously it made them all much, much more functional.

Dr. Nath:
Oh, wow.

Dr. Urion:
And so it began as an empiric therapy, with first what was available at the time benzidrine, later replaced by dextroamphetamine, and then later yet by methylphenidate. So it really began as a sort of accidental empiric discovery.

Dr. Nath:
Oh, wow.

Dr. Urion:
We now realize that these agents are very active in nerve cell pathways in the brain in which dopamine and several other related so-called monoamine neurotransmitters, or the little packets of chemical that send messages around, are functioning. It was discovered in the reverse order that is you had something that worked and then you needed to figure out why it worked.
Now there have been three very large trials. The largest was here in North America, the so-called MTA trial, which compared children with well-established diagnoses of attention deficit disorder, that were treated in a variety of ways. Some received behavioral interventions only, and some received behavioral interventions and stimulant medication. And at a remarkably high rate, the children that received stimulant medication and behavioral therapies together did better in ways that mattered to them in terms of their life, than being more functional academically, in less trouble in school, having improvement in their hyperactivity.
So I think that trial was really quite huge and well powered. As you know, we talk about statistical measures of how good a study is. And so I think that that's now fairly effectively demonstrated that for the vast majority of children, stimulant medication along with interventional therapies, leads to more success in school in ways that matter to children and families, and with very low and manageable rates of side effects.

Dr. Nath:
Side effects, since you're bringing it up, things like difficulty eating, headaches, what do you see the most of?

Dr. Urion:
Yeah, I'd say that headaches, stomach aches, loss of appetite, difficulty with sleeping, and then a little bit further down the line, motor tics, that is involuntary motor movements, are probably the things that we encounter most frequently. If we see any of them, we can almost every instance moderate or modulate the dose, the form, the delivery system and find a medication and a delivery system of that medication. Is it capsule? Is it a pill?

Dr. Nath:
Sure.

Dr. Urion:
Is it a time release pill, et cetera, that works for a child, that's successful and is not associated with unacceptable side effects.

Dr. Nath:
So this is the question that comes up all the time with us, and I'm sure with you on a daily basis, which is that while there are other stimulants, which are known to be illicit substances, that are abused. So does using stimulant medication as prescribed for ADHD predispose someone to have a future addiction to an illicit stimulant later?

Dr. Urion:
So this has been looked at pretty carefully in a couple of different directions. So if we do long-term follow-up studies of children who were treated with stimulant medication successfully over the course of their childhood, it actually seems to have a protective effect against later substance use.
In addition, if we look at people who had diagnoses of attention disorder and weren't pharmacologically treated, or aren't being pharmacologically treated, there's actually an increased risk of certain substances, particularly ones that stimulate the dopamine system, but in a much more uncontrolled and difficult fashion.

Dr. Nath:
So that's the opposite of what a lot of people think.

Dr. Urion:
Treating seems to have a protective effect later in life, and not treating seems to actually have an increased risk for later issues with substances.

Dr. Nath:
So another question for you. She described having ADHD and dyslexia. Previously we had an episode with Barbara Corcoran from Shark Tank, as she talks about succeeding in the business world and having her dyslexia. Everybody check that out. But this was something where she had ADHD and dyslexia. Do you see a lot of that, where both of those go together sometimes?

Dr. Urion:
Yeah. It's a very common confluence of events, and I think that it is the co-occurrence of two reasonably common learning issues, as opposed to the idea that one leads to the other. But clearly, if you're struggling with something like dyslexia, having an attention disorder on top of it can make any of a number of things more challenging. It makes it harder for you to focus and pay attention to the remedial strategies that are being given, makes it all harder to struggle through reading, et cetera.
And by the same token, having a dyslexic disorder is a way of undermining some of the compensatory strategies that many people with attention disorders develop. Many people with attention disorders are inveterate keepers of lists, and pretty minute lists.

Dr. Nath:
Yes.

Dr. Urion:
They realize that an external scaffold is a pretty good idea, and so they walk around with checklists. If you have difficulty, however, with the whole issue of literacy, that's not a particularly congenial way to try and keep yourself organized. So that's a very humble example of how the compensatory mechanisms that some people use can then be undermined by having the co-ex and dyslexic issues.

Dr. Nath:
Lizzie talked about how she kind of got around difficulties with reading with baking, and so she says sometimes she wouldn't rely so much on the written recipe but had learned what to expect. What should the bread feel like? What should it smell like? What should the cake texture be when it's ready and done for the oven as opposed to reading? It should be in for 20 minutes. She learned to use her other senses to kind of compensate for having less written input. Do you see this much with your patients? Is this common?

Dr. Urion:
Oh, absolutely. I mean, I think there's two things that are there. First of all, using compensatory systems is always the mark of somebody who has successfully done a workaround of whatever their particular learning disorder is. But what's even more interesting is there's a body of information that suggests that actually it would be bad to think of things like dyslexia as purely a deficit. I mean, there's clearly a difficulty in certain elements that are essential to the reading process, but we actually know that many persons with dyslexic disorders are significantly gifted compared to the population at large in other domains. So it may well be that in addition to the fact that she had those as compensatory and effective strategies, she was just better attuned to the idea that she made finer gradations of understanding texture or smell than most of the rest of us are capable of doing.

Dr. Nath:
Sure.

Dr. Urion:
It's important for us to recognize the fact that context, and historic context and how that shifts, is also important for understanding what the impact of somebody's learning issue is on their life.

Dr. Nath:
So that's a lot of factors that go into how these sorts of things present. So they vary within a country, probably, different sort of context, different sorts of schools and certainly across the world. Do you notice that, or is that something that comes up with a patient that first thing to ask, okay, what sort of school are you in? Is this a home school?

Dr. Urion:
Absolutely.

Dr. Nath:
That kind of thing?

Dr. Urion:
Absolutely. It's impossible to practice this particular part of neurology without really understanding the context of people's lives. Because no two experiences are exactly the same, no two classrooms are the same, no two school systems are the same. So understanding what the values are, what the intentions are, what the trajectory is, an incredibly important part of helping understand this. And therefore also sometimes having a conversation with families about is this actually the best particular setting for your child, given what it is they're doing and how it is they function in a classroom setting.

Dr. Nath:
I have a question for you that comes up a lot, and I want to hear your take on this. There are families who will ask point blank, did I do this, coming from a parent. And from what I know of genetic studies, there's not like one particular gene that seems to predispose, but there does seem to be some of this that runs in families and there may be some genetic component that we don't completely understand. What do you tell parents when they ask you that?

Dr. Urion:
Many families will come forward and sort of say, everything I'm talking about with my son, actually I remember in school. So I think that there are two things I think we can point out about that. I think that sort of saying, right, except this is not your fault, and so let's not have that conversation. Let's say how lucky your son is, your daughter is, to have somebody who can be empathic with their struggles because you remember them.

Dr. Nath:
Exactly.

Dr. Urion:
So I'm going to say this is a gift and it's not a deficit and can be compassionate about that. The other thing is that it's likely to make you a better advocate for your child in the classroom because you actually know what it is you're talking about, and can remember your own experiences in the educational process and hope for a better experience for your child, because as we all do for every part of our children's lives. So I think that those are ways to sort of think about this.

Dr. Nath:
I want to hear your perspective. You've been practicing for a while, so essentially you have watched this field unfold for four decades or so. Based on that experience, what do you see up ahead, or what makes you hopeful?

Dr. Urion:
The parts that make me hopeful about all of this is our increasing public conversation about neurodiversity as one more variable that we need to consider when we talk about what is a whole and inclusive society and what does it look like. And so that conversation has gone quite far in the four decades that I've been at this, and it makes me quite hopeful because those conversations we didn't have when I first started, and it was very difficult and people felt very stigmatized by anything that was different in terms of their neurologic development compared to the, quote, unquote, usual or more normal pathway. So I think that that's one thing that's really in our favor.
The development of increasingly effective intervention strategies and technologies, in terms of people that have differences, in terms of their learning, is equally something that makes me optimistic about the future and our ability to deal with that.
And then I think, as a sort of parallel event in the development of neurodiversity as a societal concept, is also the notion that given the real frequency of learning differences in people, we cannot afford, as a society, or as an economy, to sidetrack all of those people. But I think we're understanding that, in fact, we can't afford to marginalize a substantial percentage of children. And so therefore, I think an increasing understanding that this is part of our civic responsibility, and I think that that's really changed over the 40 years that I've done. It doesn't mean that it's still not a hard conversation sometimes in certain jurisdictions, but I'd say that right now there's a much better understanding that that's what we have to do as a society.

Dr. Nath:
For any people out there, families that may just have a new diagnosis and have a lot of questions, are there any particular organizations that you send patients over to?

Dr. Urion:
Sure. One of the great advantages of the internet is it is democratized information. One of the great disadvantages of the internet is that it's democratized bad information. So I think you have to always go to websites that are well vetted and effective.
So besides the patient facing parts, for example, of the AM website, or the public facing parts of the AM website, and the child neurology facing website, they're a parent family, et cetera, run organization that think is immensely defective is one that's called CHADD, C-H-A-D-D, which is Children and Adults with Attention Deficit Disorder, chadd.org, and they're very up-to-date, and it's also very well vetted and presented in the fashion that's not either gloom and doom or over-promising things to people in terms of that. So I'd say that. And then the Dyslexia Foundation is an equally well vetted source of information in that particular domain.

Dr. Nath:
Well, David, I know you wear a lot of hats, and there's probably a line out the door of patients and residents with questions for you now, so I'll let you go, but I just want to say thank you so, so much for joining us today.

Dr. Urion:
Oh, what a delight to, first of all, to be able to have this conversation, but secondly, to be able to have it with you. It's great.

Dr. Nath:
Please come back sometime.

Dr. Urion:
All right. It's a deal.

Dr. Correa:
Thank you again for joining us on the Brain & Life podcast. Follow and subscribe to this podcast so that you don't miss our weekly episodes. You can also sign up to receive the Brain & Life magazine for free at brainandlife.org.

Dr. Nath:
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Dr. Nath:
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Dr. Nath:
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Thanks again. See you next week.

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