September 18, 2023

What We're Reading: Neurotribes

Blue Orchard Bee Resource

What We're Reading: Neurotribes


A long-standing goal at the Blue Orchard Bee is to improve the accessibility of our resources for all of our listeners and readers. Much of our work this year will be spent working toward this goal by republishing some of your favorite episode with new, fully edited transcripts. This video first appeared in the 2021 Fall series and features a discussion on the book Neurotribes by Steve Silberman. Join Jennifer Swearingen, Molly Gribble, and Danielle as they share their thoughts and reactions to this book.


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In this session, Danielle and two other colleagues discuss the book they are reading entitled Neurotribes by Steve Silberman. Join Jennifer Swearingen, Molly Gribble, and Danielle as they share their thoughts and reactions to this book.


Jennifer: I am still working on Neurotribes and I am loving it, although the chapters that I just finished are a little heavy, talking about eugenics and things like that, but it's a fascinating read.  I'm really excited.  I bought it - or I borrowed it from the library - but I'm gonna buy my own copy because I like it that much.  

Danielle: He’s a very good storyteller, isn’t he?

Jennifer: He is.  

Danielle: Do you want to kind of give us the main idea so far or kind of the high points or whatever you think so far?

Jennifer: Well, when I picked it up - I mean, I don't know why I was kind of procrastinating picking it up.  It just didn't sound like a book that was gonna be engaging to me for some reason, but I knew it was important.  I knew that you had said you liked it and then Jay really highly recommended it, so I'm like I'm gonna do this.  And I picked it up.  And I remember when I read the introduction I just had chills.  It just really spoke to me because it just… It started out with the author and I think he was on maybe a cruise ship or was it some kind of conference with a bunch of technology geeks from Silicon Valley.  And he was just noticing different things about them.  Noticing - who’s the man that did [inaudible], is that right? - he was one of them.  And he wanted to do an interview with him.  And he said he was open to doing a follow-up interview, but he wanted him to know, ‘we have an autistic daughter.’  And he starts seeing a pattern among these people from Silicon Valley that they later end up calling an epidemic of autism.  And ‘oh my gosh something’s happening to our children and it's horrible.’  And he was really intrigued and he wanted to investigate what was going on in Silicon Valley and what was the syndrome that these children were suffering with.  And just hearing the way that he described everybody - he just really, like you said, he's a great storyteller.  And he really I think brings out the best in people and it was amazing to me - I never really considered - and I don't think he gets to this in the intro - in the beginning when autism was first really being talked about, it was something we had to get rid of and stamp out and cure.  And I like the way that he focuses on the people, like Asperger and Sister Victorina, that really sat with the children, interacted with the children - not on an artificial basis, not by conducting studies as we would think of such, but just by reading stories and reading his favorite poetry - Asperger would read his favorite poetry to the children.  And just treating them like children that just needed to be nourished and it reminded me so much of Charlotte Mason.  The program that Sister Victorina put together, the schedule - the way she did it - I thought, I don't know if she knew about Charlotte Mason because by this time Charlotte Mason would have been dead, but maybe she was aware of her work, I'm not sure, but to read the schedule - it just made me smile.  I was like, ‘oh, that sounds like a Charlotte Mason education and the children just really thrived with it.  So, to go from the introduction where he’s talking about ‘oh I really want to investigate what's going on, what’s happening.  And then to go back in time, you know, like to maybe the late 1700s with Henry Cavendish and Paul Dirac (I think was the other man's name) just to show that even though it's hard to trace the roots of autism that it's not a new phenomenon.  It's not something new.  It’s people.  Imagine this - that God just creates certain people in a certain way and we all have something worthwhile to contribute.  And the only thing with people with autism is that sometimes the things that really are challenges for them can kind of make them ostracized from the rest of society and, therefore, they're not - they may not live up to that full potential, but they could if they had the support from the community.  They could see the value that they're bringing to us not just as a nation obviously, but around the world.  So, it's absolutely amazing.  I'm just really inspired by his storytelling.  I’m inspired by the ideas.  I just went into this not really knowing very much about autism and I'm learning so much.  And I'm excited about it because I have a nephew who's on the spectrum and my son is not diagnosed and he may or may not be on the spectrum, but he is different and so just to read about the respect he has for different people as individuals and to learn about these other individuals in history that had that same kind of respect and weren’t just clinical, but really cared about these kids as individuals is - it’s just really - I have chills just talking about it.  It really inspires me to respect personhood and I know that Charlotte Mason would just - I think she would love this book.  

To go back in time with Henry Cavendish and Paul Dirac… shows that even though it's hard to trace the roots of autism it's not a new phenomenon.  It's not something new.  It’s people. ~Jennifer Swearingen

Danielle: Molly, have you read Neurotribes?

Molly: I have not.  It sounds like something I would be interested in.  My son is autistic.  I have, well I have four kids, you know, Jen.  He is probably more what - how you would describe Asperger’s.  They say all these different things, but that was the one thing - before I went and got him evaluated, I was actually pretty deep into CPS by then - the collaboration bit - so, when I went and got his evaluation the way that the neuropsychologist talked about him was like such an affront to me because I was so steeped in personhood by then and kind of seeing things differently.  I had already had a lens change about it.  We definitely were having issues, but it just was that guy was so defensive when I brought up collaboration and you know that this was literally the only thing that had worked with him.  And because I was listening to him - you know, I was learning about him and I was listening to him and it was just starting, but yeah it was very it was being viewed right away how I view my kid at all and I was thankful to have come to that kind of prepared in a way.  Otherwise, I mean you could be completely blindsided by these people who, you know, have their PhD and they’re doing this whole battery of tests on your kid and telling you you need to put them into like dog training or whatever - it’s just so true - we’ve seen a lot about ABA.

Danielle: One thing that stood out to me about the example that you gave, Jennifer, about Cavendish and some of the other people that he kind of sketches out was that they were successful because they were able to kind of create their own environment and make that fit for them.  And Cavendish, by the way when I read that book, it struck me so much because he reminds me of my dad, so it really - it just tickled me to read the little scenes about Cavendish and to think about that - to think about how many of those the other kids that he talks about in there, you know, were not given the opportunity or didn't have the circumstances that allowed them to create that environment for themselves.  

I like the way that he focuses on the people, like Asperger and Sister Victorina, that really sat with the children, interacted with the children… just by reading stories and reading favorite poetry. ~Jennifer Swearingen

Jennifer: His father definitely seemed really supportive of him, which I really appreciated.  And I love how it went from the past right into the present with the Rosa family and talking about their journey and trying to find the right ways to help their son.  And how in the beginning, she was really focused on curing her son.  She wanted her son to go back to normal - to be back to normal, but at the end she had decided to respect the personhood.  And they were living in a house that was very set up - the environment was friendly for him and it was just amazing to me to read about all these other books that now I want to put on my reading list - you know, the ones by Temple Grandin and - oh, who were the other ladies - I wrote them down, but to hear about this holding therapy, which sounded horrific - honestly to hold a child by force and the ABA and then the certain diet - the GFCF diet, I believe they called it, because I do remember, I remember when there was this big breakthrough where the diet of autistic children could really help alleviate some of the ones maybe who weren't verbal or it could really help them and help make them more verbal and I’m not saying there's nothing to that, I don't really know, but I know it was a hard change for the Rosa family because his diet basically had to chang completely - it was a 180.  But she felt sad for him because he seemed like he was cooperating, but just not thriving.  So, it was exciting to see the evolution of their journey from ‘please, just fix my son’ to respecting who God made him to be.  And I liked how they did it from the past and the present.  They're showing pictures of all different time periods and kind of not in necessarily a linear way, but showing how far autism has really come since it became a household word.  So, I'm excited I am eager to read the rest of it and I want to highlight - that's why I want to get my own copy - because I like to highlight certain parts - like it's a library book, I can’t, I can’t, but I am very very pleasantly surprised because I just thought it would be a book that I knew I wanted to get through.  I knew it was important but I didn't expect to enjoy reading it this much and get a whole bunch of other books that I wanted to read as a result of it.  So, yeah.  

Imagine this - that God just creates certain people in a certain way and we all have something worthwhile to contribute. ~Jennifer Swearingen

Danielle: I’ve bought that book for several people and at the same time, I was the same as you - I was a little bit intimidated with it at first, but then once I started reading it I could not put the thing down.  

Molly: I’m gonna get it.  

Danielle: It was almost like Harry Potter.  Jay was like, ‘you're still reading that book? Like, can you talk to me for a minute?’ I’m like, ‘no, it's really good.’

Jennifer: ‘Go make the kids dinner.  I'm busy.’

Danielle: You mentioned a book by Temple Grandin that you wanted to follow up on - that was one of the questions I had for you:  what other things is this stirring up for you that you want to jump off and, you know, learn about.  

Jennifer: Okay, I've seen the movie on Temple Grandin a couple times, which I did find very inspirational and so her book, I think, is Thinking in Pictures.  So, I'm interested in that.  I'm interested in Oliver Sacks.

Molly: Oh yeah - The Man Who Mistook His Wife for a Hat.  

Jennifer: Say it again.

Molly: He wrote this book - he wrote another book - I'm sure it's not the one you're saying, but it's The Man Who Mistook His Wife for a Hat.  It's a very interesting book actually.

Jennifer: Yeah, he sounded like a really interesting author.  I've heard he's also a good storyteller.

Danielle: Yeah he is.

Molly: Yes.  

Jennifer: Let’s see Clara Claiborne Parks’ The Siege.  The book that they mentioned in this book by Oliver Sacks is An Anthropologist on Mars.  These were the three that I was interested in pursuing next.  I'm looking up at my notes from the intro to it.  I'm remembering I found it so interesting that when you think about the autistic community at large you think of loners.  And his description in the intro was so fascinating to me because these people did do their work alone.  They thrived, you know, in solitude and enjoyed working by themselves, but they also really liked being around other people who had the same way of thinking that they did.  They really - what did he call them - ‘a convivial society of loners’ and I thought ‘oh, what a really - what a cool picture of a learning community.’  You know, all education is self-education.  Educating themselves, coming together, and sharing their findings.  And I think it was Temple Grandin also that said a lot of times autistic people do better married to other autistic people or at least other eccentric people.  I don't know where or how she came to that conclusion, but it seems to make sense.  

Danielle: I think there’s data on that.  Sarah Hendrickx, I know, has mentioned the same thing - that even if they're not, you know, diagnosed or don't know before they're married, we seem to find each other like magnets.  

Jennifer: Right, absolutely - because you're on the same page.  Who doesn't want to spend the rest of their life with somebody who's on the same page as they are.  

Molly: I've been thinking about this a little bit with my kids and like who they kind of are drawn to and I find that's very true.  Even the siblings - my little girl, she's neurotypical, but she tends to draw people, like autistic people, too.  I think she just has a way with autistic people now because she's like been around her brother forever and she's had several friends and I just find it interesting.  I've put them into rock climbing together - that’s kind of a sport that I feel like draws more eccentric people because it can be very intensive, but it's also very personal-driven.  It's more individual.  So, it's been really interesting to see the kids in that group and I was right - there's a lot of kids who are just, you know, they're just a little different and my kids feel more comfortable for sure in that group of kids.

Danielle: Tony Attwood has noticed the same kind of thing, Molly, and he refers to those - the kids who are not autistic or the people who are not autistic, but they grew up with somebody in their family who was - he was in that situation and he says ‘we're like the translators, so we can speak Aspergerese and regular, like neurotypical speak.

Molly: Exactly.  Even though my family wasn't like that - because I worked at Easter Seals when I was in high school (that’s my first job) and I spent a ton of time with a few different people and I'm sure that they were autistic but they were just diagnosed with you know pervasive developmental stuff, you know how they diagnosed everybody like that because this was back in the late 90s.  And so I kind of just, I don't know, it's just kind of natural to me, you know.  

Danielle: Anything else, Jen?

Jennifer: This does not go along with the book especially.  I just noticed that when I was in college they really needed special education teachers, but I didn't think that was my calling and now I look back and, I know hindsight's 20/20, but I missed it.  I love working with special needs kids whether they are on the spectrum or there's something else that is going on with them.  There’s something about special needs kids that makes them - it's just a different plane than your neurotypical children that are, - I guess I should say maybe going through the public school system, I find it really interesting that my kids - my older kids are in their 20s - and when the older kids would hang around with their public school counterparts it wasn't a problem, but I noticed now with my youngest who is - he special needs, but so are his siblings - but the youngest one who there's a big eight-year gap and when he tries to intermingle with the public school age kids, I mean that's just who we have, it could be with private school too but I just noticed a huge discrepancy in their ability to interact well together and I don't know if that's because society has changed, the public school has changed, I'm not sure what's fueling that, but it makes me realize how much the children that I adore being around all have something that makes them neuroatypical and I just, I’m super excited to be part of such a neurodiverse and amazing community and this book just makes me happy.  So yeah.  I would recommend it to anybody.  

Danielle: I wonder if some of that is like how quick things have gotten.  You know, like I feel like, and I'm not making a fair comparison because I grew up more in a rural location where maybe things were slower anyway, but I feel like at least where we are now it's like it's so transient.  And kids just don't necessarily just go play with the kids next door all afternoon, right.  It's go from one place to the next and you either make a connection or you're gone.  And I feel like a lot of our kids need a little bit more time.  

One thing that stood out to me about the people that [the author] sketches out was that they were successful because they were able to create their own environment and make that fit for them. ~Danielle Merritt-Sunseri

Jennifer: Yes.  That's a great point.

Molly: Yeah, Sam does better just with like a couple of friends, you know, that he knows really well, but when it gets into those situations - like he was in day camp this summer with a lot of different kids and that was just a lot for him to handle.  All those other kids - and they're mostly from just going to regular school, public or private, but there was a few kids in the group that were homeschooled and they all kind of hung together and I was impressed by the fact that they were kind and stood up for each other because there was some bullying and stuff going on.  They seemed to be more - like less group-thinky and more like, I don't know, just positive and supporting each other kind of friendships.  And I wonder if that is a difference with being at school because there's just so much of that group mindset and protecting yourself all the time that I think goes on at school.

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