Neurodiversity

00:00:00 I'm Ednarian, director of the center. Today's program is on neurode diversity and uh Dr. Jerry Haritz, the associate director of the center will present the participants and then we'll get going. Well, welcome everyone here in uh in cyerspace. Um we have a very interesting panel today for discussion on neurodeiversity.

00:00:32 So if you raise your hand when I mention your name. Susan Sherow is a training and supervising adult and child analyst at the New York Psychoanalytic Institute and the Berkshire Psycho Psychoanalytic Institute. She serves in the faculties of Mount Sinai and Albert Einstein colleges of medicine is a past president of the association for child psychoanalysis and chairs the faculty at New York Psychoanalytic Institute. A pioneer in psychoanalytic treatment for children with uh autistic spectrum

00:01:02 disorder. She developed the Shercow center method and co-authored autism spectrum disorders perspective from perspectives from psychoanalysis and neuroscience. Her numerous publications and presentations address topics including female autism, gender identity, infant development, eating disorders, and sexual abuse. In 2012, she founded the Sheral Center for Child Development and Autism Spectrum Disorder, a nonprofit offering training, research, and low fee treatment.

00:01:34 David Sultzer is a professor of psychiatry, neurology, pharmarmacology at the school of arts and at the school of arts at Columbia University and a New York State Psychiatric Institute. He earned his PhD in biology from Colombia where his lab has published over 250 studies on synaptic function particularly in the basal ganglia and dopamine systems as well as on neuroimmunology in both healthy and diseased states. His work has been cited over 50,000 times. He founded the

00:02:06 Dopamine Society, the Gordon Conference on Parkinson's disease and Nature Parkinson and Nature Parkinson's disease. His awards include honors for the Mcnite, Simons, Helmsley, and Nars foundations as well as international institutions including the NIH, Harvard, Yale, UCSF, and the Vatican in a timely fashion. uh remotely we have Ingamarie uh Eigy. Uh she is professor of clinical

00:02:37 psychology at the University of Connecticut and director of research for the institute for brain and cognitive sciences. She earned doctoral degrees in clinical psychology and brain and cognitive sciences from the University of Rochester and completed post-doal training in pediatric neuroiming at Columbia University. a licensed clinical psychologist. Her research focuses on language, communication, and brain development in autism with over 100 peer-reviewed publications. Uh she's primary investigator on the NIDCD funded

00:03:11 connect grant and co- uh primary investigator on multiple NIH and NS and National Science Foundation funded training and research grants on autism, neurodiversity, and communication. Claudia Lugo Candelles is a licensed clinical psychologist specializing in per in the perinatal programming of risk and resilience for neurodedevelopmental disorders. She obtained a BA from the University of Puerto Rico Rio Pedras, a PhD in clinical psychology from the

00:03:43 University of Massachusetts Ammerst and completed her clinical internship at the New York City Health and Hospitals Lincoln Division. Dr. Lugos Candelas completed a post-doal research fellowship in the child and adolescent psychiatry division in 2018. That same year, she joined the faculty and in 2020 was named the Bender Fishbine Scholar in Child and Adolescent Psychiatry. Dr. Hugo Candales's overarching research interest is to better understand the

00:04:14 early development and inhibitory control difficulties particularly within developmental disorders such as ADHD. She is particularly committed to understanding the exposure and experiences that are most relevant to communities that are uh minoritized, underserved, and underrepresented. And last but not least, Amy Lutz is a historian of medicine at the University of Pennsylvania, the vice president of the National Council on Severe Autism, and the parent of a profoundly autistic

00:04:45 son, Jonah, who's 26 years old. She has written about profound autism for many journals including the American Journal of Bioeththics, the Hastings Center Bioeththics Forum, Autism Research, and Frontiers in Psychiatry, as well as for more mainstream platforms, including The Atlantic, Psychology Today, The Washington Post, and Slate. Her most recent book is Chasing the Intact Mind: How the Severely Autistic and Intellectually Disabled Were Excluded from the Debates That Affect Them Most

00:05:16 from 2023. She is also the author of We Walk: Life with Severe Autism and Each Day I Like It Better: Autism, ECT, and the Treatment of Our Most Impaired Children, whichever of her five kids happened to be home at the time. So, with that, let's get started. Okay. Anyone? Yeah, we can ask each

00:05:48 other questions. So, just jumping right into it. I'm really curious about electrocomvulsive therapy and autism. Can you tell us something about this? This is new for me. I don't know about for you guys. No, we're all we're all shaking our heads. We're all ignorant. Okay. Yes. So, uh, my son Jonah, as I, as you heard, is 26 and he, uh, is very severely affected by his autism. Um, he has a tested IQ of, uh, 40 and some spoken language, but not too much. And

00:06:20 he has he was a very aggressive and self-injurious as a child. and he ended up being hospitalized for almost a year at Kennedy KGER um which is probably one of the best units in the world for uh for kids who have autism or or other developmental disability and severe behaviors. And uh he was stabilized there, but when he came home uh he was nine when he went there and when he came home after about a year he was okay for a little while and then he was just as

00:06:50 bad as ever. And I knew they used electrocombulsive therapy at Kennedy Creger for some of their treatment resist most treatment resistant toughest cases. They failed medication trials with behavior uh plans and they had uh amazing responses. So when Jonah uh kind of regressed after his year at Kennedy, we that was what I wanted to try. Um and it took a while. It was hard to get ECT for an 11year-old. Uh we

00:07:22 actually no one in Philadelphia would do it, but we ended up coming here to Mount Si to do it with Charlie Kilner. I don't know if uh anybody knows him. He's retired since then. And when Jonah had a great response, he uh they Dr. Ker was able What kind of response? What was the beneficial response? I can say one thing for people because I think when you hear electrocomvulsive therapy, everybody jumps to, you know, Jack Nicholson in one flu over coo's nest. It's not done that way at all anymore. The people are

00:07:52 under an anesthesia. Yeah. So there there's unconscious when it's happening. Yeah. Um muscle relaxance. Yes. So it's a it's an entirely different approach to that kind of therapy than in the 50s. Oh yeah. Yeah. Yeah, I teach a history of psychiatry class at Penn and I made, you know, I showed the students of One Flover the Cookies Nest and we discussed the impact that that singular movie had on perceptions even today about ECT. Um, the response was transformative. You

00:08:23 know, he went from attacking us multiple times a day sometimes to never attacking us. And he's been getting regular ECT for 15 years. Now, regular means how frequently? Means three or four times a month. And so he's had over 600 treatments, no side effects that we can tell. Um, but he's it's the only thing that allows him to go to his day program, live at home. I mean, I couldn't manage him physically when he was nine. Now he's almost 6 feet

00:08:54 tall and 200 lb. So if he was still having those kind of aggressive behaviors, he would have to be on a pretty restrictive locked ward for everyone. If there is a period where he's not receiving this, does he backtrack and help? Yes, exactly. So, in fact, we ended up in the emergency room a couple of weeks ago because um he didn't quite make it to the end of the ECT interval. I've been, you know, finding the maximizing the effect of ECT for the minimal amount of treatments is one of my life's projects. And so, I

00:09:24 keep playing with the ECT schedule. And this time, he didn't make it. And he had a breakthrough of catatonic symptoms. So a lot of and I should say like as I was going through this initial ECT experience, I was taking notes. My background is writing. I knew I would write about this and there are it's becoming increasingly um well known that ECT is very effective to treat um aggressive and self-injurious behavior in autistic severely autistic kids who uh who have some kind of medical

00:09:56 condition that's driving it. So Jonah's diagnosis was bipolar with catatonic features. other kids have a more typical catatonic presentation and uh with Jonah when he didn't you know the reason why we ended up in the ER because he started he was very agitated and he was posturing which you know this classic symptom of catatonia you know just kind of bending down touching the floor getting up lying down just going through these repetitive um motions and he was also though like leaning against like

00:10:28 the counter and his uh his psychiatrist is still Leewtell from Kennedy Kger after all this time and we've become uh friends from our from years of working together and advocacy around ECT and severe autism. So I had no compunction about filming Jonah and sending her a text at like 9:00 on a Monday night to say, "What do you think?" And she said she she thought it was catatonia, but she said the words that no severe autism parent wants to hear, which is you

00:10:59 should take him to the ER to make sure it's not something physical because the way he was leaning against the counter. Maybe he's impacted, you know, may he who knows? He's 26. How old was he at the time you're talking? This is just a couple weeks ago. Yeah. So um so yeah so when we don't get the ECT in time the the symptoms do return and we just don't know why that is. Okay now do the science hat just for a sec. Um so people diagnosed with autism have a very very

00:11:31 high incidence of seizures. Yes clinical seizures and about 50% of people that are diagnosed with autism. Of course, this depends what flavor of the many many different flavors, many disorders that autism has, but it's very very common. Yeah. ECT purposely mixes seizure. Y and Jonah does have epilepsy, so he's also on uh anti-seizure medications that we um so they have to reverse his the benzo that he takes in his in his IV

00:12:01 right before they administer the electrical stimulus that causes the seizure. Wait, say that again. They because he takes globazam for his seizures they have to reverse the effect of the benzo it in order to have a good seizure from ect. Now some people wonder if ect might cause seizures in you know in it definitely causes seizures. That's the point. Oh later after not in that moment. I mean like to develop a seizure disorder. Yeah. Um but as you said it's seizure disorders are so common in this

00:12:31 population it's really hard to know. Um, but I will say that when Jonah we do see some seizure activity from him, it's always at the end of the ECT treatment cycle again because ECT does raise the seizure threshold. So, it's as it wears off that it comes down and then we start to see some of the twitching. He gets a lot of he's had some grandma seizures, but his bigger issue has been with myiaonic uh seizures, which you know are like twitches that in isolation can look like a hiccup, but but in a cluster could look like your person is is

00:13:02 shortcircuiting. Really, I was hoping to jump in um to this very interesting discussion. Um I'm first I wanted to say just how nice it is to hear that your son has had this really really positive response to ECT. I'm I'm so happy and it it sounds like you're able to uh keep him at home with you which is a wonderful outcome. Um I I this seems to bring us naturally to the a topic that's really central to discussions of neurodeiversity and that

00:13:33 is how the um uh how the discussion of of neurodeiversity and and all the strengths and positive sides of autism. how how can those perspectives um be integrated with the the very particular and um uh high support needs of of people like uh like your son. Um would would that be a topic we could uh we could turn to now? And uh I wonder um uh Amy if you have uh

00:14:05 if you have thoughts about that topic yourself. I have lots of thoughts on on that topic. I'm really curious to hear what everybody else has to say. Um I when I was invited to uh participate in this panel, I had no idea who else was going to be here. Um and obviously I don't come from a medical background. I just sit in judgment of all of you medical practitioners through history. Um but you know autism is you know has become so politicized in a way uh that I

00:14:39 think is you know um has been very harmful to the people who are most severely affected by it like my son and I'm constantly uh in these you know you know part of what's known become known as the autism wars you know the the conflicts between that I mean the very rough fault line is between parents of severely autistic kids and generally like neurodeiversity advocates who um who are

00:15:09 mostly uh kind of more mildly affected autistic adults uh who have a more identitarian view of of autism and uh I'm so I was anticipating that there might be a neurodiversity advocate you know as part of the panel I thought that would have been um kind of important certain to hear from somebody who is very much invested in that ideology. for me um you know I it's hard you know

00:15:39 something that I say a lot is that uh I never I never thought in a million years that autism would become trendy as it has you know with uh um people kind of celebrating it people self diagnosing with it and then turning around and kind of weaponizing that celebratory view against the kind of services that my son needs You know, I could talk about this forever, but I am curious as um people working on the medical side of autism where how you see this impacting your

00:16:11 work if at all. Well, I don't see the neurodeiversity side as much. Uh the patients who come to me clearly want to be helped to become as neurotypical as possible without any doubt. And I I don't and haven't had to engage in that other aspect of this we're aing or enabling the these people um by or being abbleist by trying to help them. The parents clearly

00:16:43 come with an agenda that matches my abilities which is to help the children become less autistic if we can help their symptoms um move in the direction of neurotypical. If we can help them move from a special needs school to a more neurotypical school, we can support whatever skills they have. And we also give medication just to say at the outset that we do believe that combination of medication and intensive psychotherapy is what does help move the

00:17:13 children from one place to another place along the trajectory. So when we get very profoundly autistic children like your son, we we're really in trouble because we don't have the skill set to or the ability to give them as much as they need. We don't really understand it as much as I'd like to understand it. And and of course, it's much more work to get on the floor and play with a 2-year-old or three-year-old who's moving backwards instead of forwards or who's spinning around psychologically

00:17:45 speaking or literally literally and psychologically and just when they seem to emerge and they start to use a few words, they move backwards. So, one of my questions for the whole team here was how people are understanding profound autism. We I actually sent my intern to the Siver Center on Tuesday for their all day long uh seminar which I I attend usually every year but this year I I didn't have time to get there myself but their whole dayong program was on

00:18:16 profound autism. Was anybody at InSAR? No. Yeah. Yeah. Did you go to the talk on where Kathy Leward and Matt Seagulla announced the new consensus definition of profound autism? Yeah. Yeah, it was a really it was really a um I thought a very interesting panel and and very well well done. I think um they're trying very hard to sort of respect the positive sides of of the neurodyiver diversity

00:18:47 movement and and you know all the things we can get from that. But at the same time just saying, hey, people have been some people have been really left out of that conversation and they need things that uh sort of neurodiversity movement isn't isn't giving them. And um uh yeah, I think it seemed to me like the audience was pretty receptive. And that audience, I will say, at InSAR is filled with a lot of um people coming

00:19:17 from a a neurodiversity perspective, a lot of uh grown-up uh highly verbal adult self- advocates and and others um autistic members of sort of members of the autism community. and um it seemed like there was a lot of uh positive uh respect for for what they had to say with that new definition. Yeah. So for those of you who are not familiar with the new term profound autism so this is in this is uh kind of suggested in by the Lancet commission in 2021

00:19:49 uh which was a large group of uh autism researchers, clinicians, parents, autistic adults from six continents. I think there were over 30 of them and they were brought together to issue a five-year plan of just autism at large. But the what everybody was talking about when that uh 60page paper came out was this small sidebar that proposed introducing a new label of profound autism uh in response to DSM5 which got

00:20:19 rid of all the subtypes of autism like asperers or PDNOS and just offered instead this autism spectrum diagnosis. And most stakeholders have found that to be not helpful um because it include now you have one label autism spectrum disorder that includes my son and includes Elon Musk apparently. So um you know that isn't useful for research. It makes it very hard to um craft policies that affect this population. So profound

00:20:50 autism is a way of reversing this lumping move of DSM5 and splitting up the spectrum again. Uh and it was, you know, again, a lot of uh uh was very there was a lot of uptake of this term since then. Uh and I knew profound autism was here to stay when the CDC released prevalence numbers specifically for profound autism because no one has ever accused the CDC of being on the cutting edge of anything as far as I know. And if you're curious, it's not a

00:21:20 few outliers. It's almost 27% of autistic kids today meet the criteria for profound autism. What those criteria are were kind of um uh different uh diff framed differently by different research groups. But so there was a deli method which is kind of a consensus building exercise uh recently and the results were just announced at INSAR the big autism research meeting last week. And so the definition of profound autism that researchers are going to be asked to use is um I'm going to try to see if

00:21:52 I can remember the whole thing if you remember it. I can I can tell you if that's helpful. Um the focus is on kids who are older than eight to sort of acknowledge the developmental uh changes that might occur up until that point. Um a second criterion is requiring the need for adult supervision uh 247 to ensure health and safety. um thinking about adaptive functioning that is um significantly below age level expectations and people um and the

00:22:23 inability to accomplish uh sort of activities of daily living functional activities. um they have a a sort of a and/or um criterion where either IQ scores are defined as lower than 50 or people use verbal communication with single words or only use communication to verbal communication to get their needs met. Um and they the abilities like this uh are present uh all all the time. Um so there's um kind of a move

00:22:55 towards um pro providing pretty broad um you know some people cannot complete an IQ test and there's a lot of worry that IQ scores aren't particularly informative as we move lower um in in functional abilities and um so the the focus is really on adaptive skills and and the need for supervision in these new criteria. I don't know much about uh Elon Musk, but I wonder if anyone's considered ect for him. Um I was going to say you know

00:23:26 there's there's this interesting I think interesting historical parallel with the schizophrenia where there was a feeling for quite a number of decades that schizophrenia also maybe was being um overdiagnosed as a sort of biological entity and it should be treated more psychologically and that that sort of continued to some degree although you know the pend sort of swung um it swung a toward that sort of approach uh away from it and now some people thinking well why not both in some instances why

00:23:56 do we have to subscribe that it must be treated biologically and it I mean in when it's not profound um that say on that and but um I'd be curious I'm sorry to put you in the middle of everything but uh famously that I never read the original articles by boiler and presumably you have and this was the fellow that named both autism and schizophrenia in the same paper. Yeah. And and essentially said they were the same disorder. So, uh, and I'll I want

00:24:28 to hear what you might say about that because like you said, since the origination of these terms, these things have been conflated. But I do want to say one thing from a biological perspective which is that many of the genes that end up have we'll get into genetics I hope later in our conversation but many of the genes that have been identified to cause autism spec autism spectrum also cause schizophrenia and the difference is

00:24:59 typically that if there's a duplication it will cause one of these disorders and if there's a deletion it will cause the other one. and they all seem to converge on the same pathways. So that wouldn't have made sense I guess to boiler because he said that it was the same disorder. But anyway, well for boiler, autism is a symptom associated with schizophrenia. It's not its own disorder. It speaks to this kind of what Canor would call this like kind of innate aloneeness that was central to his introduction of you know

00:25:31 infantile autism as a as its own disorder in 1943. Uh but that's why he pulls the term from boiler because it speaks to this kind of lack of connection of the child to to the people around them. But it it led to some people being diagnosed as being schizophrenic who later we would diagnose as autistic. Well, that thinking I think I mean in the 19 like 40s and 50s kind of childhood schizophrenia is completely almost interchangeable with autism.

00:26:05 There's also been um quite a lot of discussion that I've heard about um the parallels between uh deafness and the deaf community and should do we conceptualize uh deafness as a uh sort of a linguistic condition and rather than being a medical condition um and making sort of drawing parallels between the deaf community and the the autism community. Um, I think those those that seems like quite a different discussion

00:26:35 than the parallels between autism and schizophrenia. Um, I don't know if others have encountered that. I haven't, but I've started to see a lot of the parallels in the world of ADHD, which is where I tend to hang out. I think that it wasn't until my work is really trying to identify risk factors in pregnancy. So the the broad scale implication is that we're trying to prevent ADHD which I have sort of you know I'm going to let out of the walls and those sorts of very seemingly can

00:27:06 all agree to kind of things but not a couple of years ago I was presented with that question of someone we were it was a fellow scientist it's like but I like my ADHD brain like it makes my life impossible and this was in the context of a multi-year peer writing sort of experience where her autism was often an immense source of distress and of impairing impairment in terms of her academic achievements and still that was like you know when we were talking about

00:27:36 the science you pose that question it's like I don't but I like my ADHD brain even though definitely has it's and I never and and I started to see a lot more of the neurodiversity perspective come into the world of ADHD become much more of an identity and and I I frankly don't know what to do with it because at the same time you see the you see the medications don't really work in the long term you see the distress you see the impairment you see the underachievement too so I I don't know what to make of it actually because my

00:28:07 work is is trying to prevent it but then should we I don't that's I see those parallels starting ADHD and I think our field is is behind definitely the conversations that are being had in autism but um it is a it is a parallel for sure the drugs are not working But amphetamine is not working long term. Long term if you see the you know the they they work in terms of behavior but in terms of educational underachievement risk for accidents divorce and those sorts of like more like life functioning

00:28:38 other outcomes not in adulthood not far off. Yeah. Yeah. That's the general panel. There was a very controversial article that came out in the New York Times I think like a month or so ago. Um so maybe maybe broadstroking too much. I see someone is nodding. Um but sort of you know the the the multimodal treatment of AD is ginormous treatment. So many sites doing behavior only stimulant only in the combination. You know they were really highlighting that

00:29:10 long long term you don't really see that many differences even though initially medications have a big effect size bigger than anything we've seen in most other fields. But in the long run sort of maybe the behavioral issues that children had went away but you still see all of this impairment sort of in other areas of their life which you know in the end as mental health professionals that that's what we're here to do is to make people happier and you know do the things that they want to do. So not in a

00:29:41 not from that perspective. I just can't help but think that the position, the perspective that autism is my superpower or ADHD is my superpower is a kind of privilege of those who are least impaired by those conditions. And you know, if I could cure Jonah, I would cure him in a second. I mean, his autism is so lifelimiting. uh when I think about all the things he'll never do and anything that any of us would consider part of what you know philosophers call

00:30:11 the good life as far as you know meaningful career uh you know reciprocal romantic relationship real friendships travel being able to participate in a conversation like this or um read about history or politics or astronomy or anything all of that is he'll never experience any of that because of his autism to so when I hear broad statements ments about autism is not a disorder. It should be taken out of the DSM, you know, it's an identity like that is very frustrating. I maybe it

00:30:43 just speaks to the need for this more new, you know, kind of a a more finely tuned classification. So that I don't mean to take away from the people who feel that autism is their superpower, but it's what the problems are. What happens when those people are kind of get the ear of policy makers and control the types of services and supports that are available to autistic people in general who by the way the people who qualify for services and supports are virtually always people who are significantly to severely impaired.

00:31:15 Well, I'm very interested in this from the perspective of trying to differentiate which children at two or three are going to move forward on a trajectory that is going to lead to them being more higher functioning. And when that doesn't happen, I'm baffled. So, I came here hoping first of all to find out more about the biology to understand what what happens when a child becomes more profoundly autistic instead of being able to use the help that we offer. Let's say we have this child here and

00:31:46 this child here and this one takes advantage of the intensive psychotherapy, the play therapy, the parents involvement, and eventually potentially medication if it's necessary as an adjunct to the intensive therapy and group therapy. I mean, we give them a full-on experience. We talk to the teachers. We talk to the schools. We give them every tool we could think of to help them get back on the trajectory, so to speak, where they've shown that they're not at age 18 months, they're now are at 20 months or 22 months. And

00:32:19 then the other child who said to me, because I heard that this child is getting better, they're moved on the trajectory. They're now in nursery school. They're moving up. They're going to classes and having friends and eating meals nicely at the table. Okay. Then there's this other little boy and he is not moving that way. He may move a little bit and then banana step forward and backward and forward and backward and the mother is frustrated and anxious and then I'm stuck. Is it because of something going on in the family

00:32:49 dynamic? Is there some incredible amount of anxiety about the the the child, the parents, the way they look and talk and think with this child that makes that child not be able to take advantage of the help we offer? Are we doing something different ourselves that we don't realize we're doing? Or is there a a biology piece that we can't see? Now, I have to assume from my own narcissistic point of view that there's a biology piece that makes one child more profoundly

00:33:21 um incapable or less capable I don't even know which which it is you know or some combination or less less uh available because of the failures of medication is there a brain difference I mean I don't even know how to ask the question because it seems like a big no I know what you're there are a lot of different there are a lot of differences and um I'll try to speak as efficiently as possible on this and just interrupt me and

00:33:52 Claudia you probably know a good deal about this too. So um you know obviously autism spectrum disorder is a lump it's a lump disorder. There are disease there are brain diseases that are all caused by one gene. An example would be Huntington's disease. Every single person with Huntington's disease has a mutation in the same gene. Um then there are disorders and autism and schizophrenia and maybe ADHD are very good examples of uh lumped

00:34:22 disorders that have many different causes and at some point will need to be separated or the kinds of therapies that you've been alluding to will not be uh will not be possible to develop. For instance, um there is a um there's a class of genes that uh affect a pathway called the mtor pathway, which we could get into, but there's no point right now. But this this shows up

00:34:53 um disturbances in that particular pathway show up in so far most kids with profound autism. Okay. Now this should be treatable with the class of drugs and there was a group at Harvard that tried to treat autistic there you know very few uh studies of this sort where you can where you try to treat kids with autism. The problem is let's get away from the brain for a second and talk about uh a multi a lump disease being

00:35:24 like heart failure. So when before we understood the biology of heart failure u you know you lump things together at this point you can treat people with uh a pacemaker or you can treat them with calcium channel blocker there are millions of people being uh treated with that there drugs that mod modify sodium channels they're anti- cholesterol drugs and you take these uh drugs depending on

00:35:54 the form of heart disease you have if you have long QT syndrome for instance, you're not going to treat that with a with a uh a drug that with a statin that that lowers cholesterol. So by starting to pull these disorders apart by understanding the biology become they become um much more treatable. Now if you had let's say that you wanted to study statins and people with heart disease. Now, if you lumped everybody together, there would be no way that any

00:36:27 of those drugs would pass because of the number of the fraction of people that have heart disease, it's still going to be a a low fraction, a relatively low fraction, and and the treatment would fail. If you can start to break these into different disorders, then you have a chance. So the the group at Harvard tried to use rapamy uh a drug that actually might be effective if you started it early enough in some people with severe autism. The

00:36:58 the drug fails. Now why does it fail? And the obvious answer is because we're lumping people together. So we must understand the biology a lot better. Now the biology of autism is frankly is poorly understood but a lot of things are coming out about it including things that explain the science of seizure. Um I have to complain as a you know in my role in life. I mean it's very very very hard to get funding for basic research in autism with the exception of the genetics uh which have been funded

00:37:30 mostly by the Simons Foundation because the late Jim Simons had autism in his family. He's put a lot of money into now Sergey Brennan starting to put a lot of money because there's autism in his family. uh but the basic biology of it is extremely hard to find those foundations don't fund basic biology and frankly neither now particularly neither does the NIH so it's very it's very hard to um move ahead in that kind of work but what the Simons Foundation in

00:38:01 particular has done is um funded supported research in the genetics of autism and they've been very very successful at that and absolutely changed the field. So, but the problem is that is this is the opposite of Huntington's disease. Again, Huntington's one gene people with uh um particular kind of ALS, one gene. Parkinson's disease is about 20 genes. Autism spectrum right now we're

00:38:32 up to close to a thousand genes. We only have 23,000 genes, right? So this is going this is going to be working out. So we can identify these genes. Most of them are are not quote monogenic and Huntington's perfect example. If you have the Huntington's mutation, you will develop Huntington's at some point in your life. Okay. If uh it just from one gene, most of the

00:39:03 genes, most of the people that have autism are do not have a monogenic cost. Some do and those are more likely to be treatable in the relatively near future. The Bren Brent's foundation is fun is starting to fund that work. So you go in if you have um one mutation in one gene that might be fixable. Um and that's wonderful and you know if that's what you have in your family that's major right but it is going to be very small

00:39:34 uh fraction of the people I I'll finish now but say the people with profound autism despite the many causes do tend to converge on some changes in synaptic pathways including the ones that are clear because of the incidence of seizures but there are other things that have to do with synaptic connections and synaptic pruning that are extremely um in people with profound autism. Um going to be very important to uh to focus on those and and it's to an extent not only

00:40:08 support for basic biology has to change but the definitions of the disorders have to change. Again the analogy to heart heart disease but in heart disease the reason why there are these various treatments is because the ethiology of the conditions are known. Why isn't the ideology of schizophrenia or of autism better known? Well, the even the genes have just been showing up over the last decade in in autism and the genes in schizophrenia. No, you know

00:40:38 that's it's the heart is not based on genes. The treatment the heart is b the heart is based on G. Talk to people QT syndrome. It's No, I understand that. But the treatments we have for heart disease are not based on anything genetic because we haven't had good ways to change genes until even now. For instance, the crisper was only introduced about 5 years ago. Yeah. And it's only now that that uh genetic changing mutations in specific genes are

00:41:08 becoming a treatment. Cickle cell um but very very few right at the beginning of that. This thing about cickle cell is interesting because u of course it's not due to a lot of genes either but but we know that it confers some im some lack of vulnerability to malaria and that's one of the reasons why the genes continue to be in the gene pool. The same thing applies to these hundreds and maybe thousands of genes that may be related to schizophrenia or bipolar disorder ADHD and autism. And what's and you mentioned I didn't know that number

00:41:39 David. It's like a thousand genes. We only have like 23,000. So what's interesting about these genes is that it's not like you have to have a thousand genes and that gives you autism. It's that there's some subset of those thousands and then there may be particular subsets that interact with one another in a particular way. So that complicates it further. But the other idea going back to the single cell is that some of those genes probably do confer some advantage and that's why they're still in the gene pool. Right? So some of those thousand there was a

00:42:10 very interesting study a few years ago and I wish I knew the authors and I don't but I want to say it because it's so cool and is they took some um uh identical twins discordant so they one had main bipolar one and the other one did not. So bipolar one is manic depression. So those people get very they get psychotic usually when they're manic and the others did not have the disorder and they looked at their uh personality profile their IQ's their you know whatever other sort of quality of life measures and the the nonaffected

00:42:41 siblings actually had higher IQs more positive personality traits based on you know lack of neuroticism and such on these and they were basically higher functioning people on average compared to the controls who didn't were not one of the twins and of course the one with with the other twin who was ill with the diagnosis had lower scores all around. So it raises this idea that there may in fact be some things that people who say they have an ADHD don't take it away from me or even mild autism who feel

00:43:12 that brings them some advantage and I and that that actually complicates the story because I totally you know I totally empathize with your position. And I agree with it uh Amy, but there is this idea that well what if your son Jonah weren't made to be normal. What would that what would it mean he'd have no g let's say there are subset of his genes that do provide you know confer autism? Are some of them decent genes or good genes for us to have? I think there probably are.

00:43:45 I think our group has a a project that seems like it speaks to this um this issue. So, we're looking at um three groups of of participants in us in this study where um one group is neurotypical folks never had a history of diagnosis of autism. Uh a second group is people who were diagnosed with autism and still have autism. And the third very interesting group is individuals who were diagnosed with autism by gold standard measures and by uh clinical experts in autism uh and we have their

00:44:17 written reports and so on. So we're very confident that they had autism uh when they were little when we do studies of head circumference. They had relatively much larger heads compared to their neurotypical control. So they they sort of carried the biological phenotype of autism when they were little. Um, but now we're seeing them as older adolescents and young adults and they no longer have symptoms of autism and uh so we're we're we're collecting uh MRI imaging data from them and we spend

00:44:47 a lot of time with these individuals and um sort of collect information from them about their language abilities and their social communication skills and so on. Um, and one thing that's been very interesting to me is when we ask them how they feel about their autism diagnosis and how important it is to them to be part of that community, um, we hear a lot less both from our still autistic group and these individuals that have lost the autism diagnosis. We don't hear a lot from them about the

00:45:21 sort of advantages and superpowers that that autism might bring them. Um they they talk the the still autistic group talks a lot about sort of wishing to have more friendships and um sort of wishing wishing for more social connection with others. That's really the most prominent challenge that they still face. And um I so I I don't know I I feel like the the dialogue the discourse that we hear from a lot of um

00:45:51 self advocates and and people uh that raise their voices very loudly in these discussions about neurodeiversity is is kind of not being echoed by by participants that we see in our research studies um where they're they they they would like to have more friends uh in essence. So even even these folks who have you know IQ's and cognitive abilities in the average range and who really um are are coping well with a lot of life would consider to be autism.

00:46:22 I in the in the ADHD world, I I'm not super familiar with sort of the but there's this notion this popular notion that maybe more creativity is seen in individuals with ADHD and there's sort of historically sort of you know people in more like creative sort of driven fields that can work in high pace environments but in environments that allow for a lot of flexibility. And I think, you know, to to sort of balance out, I do think that because we've been all of our fields so committed to seeing

00:46:52 these disorders as disorders, we haven't really systematically done sort of what you're saying of a, you know, how representative are the voices that are doing advocacy versus, you know, more representative a sampling, but also haven't looked at as systematically these maybe positives as some of these conditions bring out. So I I do think that we've underinvested in that side because we've been committed to a vision of these disorders as disorders. And I think that's that might be some of the backlash that you know that that we're

00:47:23 getting. So I I do want to say and I do think that there's also the that I I don't know if we want to talk about it now or later, but the idea that there is a mismatch in between the abilities of an individual and their environment. And I do think that that's something that the neurodeiversity angle can help us all think about. you know, with ADHD skyrocketed after the pandemic and you could see why, right? Like we had insanely unsupportive environments for learners at home and families. That

00:47:53 could speak of something of how we're doing a bad job. I I do know that that's very different from the world of people that are, you know, dealing with much more severe presentations of the disorders and there's there's less of there's less management you can do, right, in that sense. Yeah. I I am so interested in I feel like there were kind of two things that you said there. The second part was about the social model of disability. That's kind of I've written a lot about that and have a lot of thoughts about that. But I just wanted to say that I I think I disagree with the first thing that you said that about disorder um you know autism and of

00:48:26 course I do have a daughter who has ADHD and I it's very disabling for her but she you know she doesn't have the intellectual disability uh that her brother has. But I will just say that autism is defined as a disorder in the DSM if you don't have if the kind of the two core deficits as it's phrased right now in the DSM which are rigid and repetitive behavior and problems with social communication. Like if they do not cause significant impairment to your life, you don't meet the criteria for autism. So actually I'm not at all

00:48:56 surprised to hear that your autistic subjects reported feeling um that they wanted help and they wanted and these condition these symptoms were disabling to them and they would wish they you know wished for some kind of treatment that would help them connect more. I think that the the the kind of the the neurodeiversity rhetoric that we're all hearing uh is is it does not represent a substantial portion of the autism community. I do think it's a faction

00:49:28 that has been extremely loud and also been amplified by a kind of identitarian moment where you're kind of not allowed to push back against this type of um toxic positivity around disa disability more generally. uh you know so um uh Freddy Dbor who's a who's a writer I really like uh he's a kind of a kind of like a public intellectual who had who

00:49:58 has bipolar disorder that he find that he has left him psychotic and hospitalized and he wrote an amazing piece on the gentrification of disability this idea how these the highest functioning voices are becoming the ones who are speaking for everybody and that is a problem. So, I'm really thrilled to hear about your paper. Um, I can't wait to read it when it comes out because part of the problem is when autistic people do stand up and say, "I don't actually think my autism is a superpower." And, um, there are lots of

00:50:30 issues I have that I wish I didn't have. I mean, nerd, I don't know how much time you guys all spend online. You know, I'm guessing maybe not as much as as I do or even like my kids do, younger people. But if you get on Twitter, I'll still call it Twitter, and like talk about as an autistic person that you are kind of sympathetic to the people who argue for the need for profound autism and you have these kind of disabling traits, you're attacked as being a self-hating autistic person. So the the kind of the

00:51:00 censorship and the cancelling is is so real um that you know I think there's a I'm sorry I'm interrupting on somebody but there's another piece of this that I think is really important. um papers have come out very recently on both ADHD and autism looking at the content of Twitter uh excuse me um ADHD or autism is the subject of the video and for example my colleague Diana Robbins at Drexel published a paper about the accuracy of the autism information in

00:51:32 these Tik Tok videos during one calendar year and she found that 75% of the content uh was inaccurate and we see this translating at the University of Connecticut to just a wave of people self-referring to our clinic um because they they they believe they have autism. And when we do our full evaluation, we come we say, "No, you you do not have autism." That challenges that you're having, those are relationship conflicts

00:52:03 that are age appropriate and typical or you're struggling with an anxiety or or some other challenge, but this is not autism. But I think a lot of the voices that are speaking and and talking about my struggle with autism online, sometimes those are voices that are are not reflecting sort of an actual struggle with autism, but perhaps some other um some other disorder or another condition or or something kind of that's just normative. Um, so I I worry a lot about the voices that are are speaking

00:52:33 for autistic people um where they they are not actually um u you know people people with the experience of autism. So I'd like to jump in into the middle ground between the profound autism and the ones who are on the internet desperate to be given a diagnosis because it's a lot of fun to have a diagnosis. on behalf of the parents and the families who want to understand their contribution to their child's health and welfare from the perspective of there's

00:53:06 something more than the genes because I think we we we understand even though I don't work in a lab that there are genes involved in autism but I'm also very much aware that it's not just the genes there's a genes plus a a perinatal and a post-ndatal impact. There's epigenetic events. And everything I've read, the more I read, the more I see that there is epigenetic events. That is something's happening between the baby

00:53:36 and the mother, between the baby and the fetal environment. For example, the girls who are born to mothers who've had an autistic boy have more testosterone intrauterine in the intr fluid. And I've actually had a patient who had testicular material on her ovaries because she had two older brothers who were autistic and very disturbed. One of them suicided, the other was not so functional. I mean there there are these

00:54:08 rare occasions where you actually find someone in your office who has been one of these people you read about who's been affected by the maternal testosterone effect. and their articles about the masculization and so on of girls who whose uh family have u been loaded with autistic young men. She's shaking her head so you know what I'm talking about. But but what is the epigenetic effect? Because that those are the parents who come to us where they want help and they can receive help

00:54:40 because it's their anxiety that's interfered. a lack of the ability to have mental representations delivered between mother and baby. I don't know how familiar you are with infantile psychoanalytic perspective which is that much of what happens in development is about the mother baby relationship early on. the mother's ability to be in a reciprocal relation, making eye contact, being able to babble with her baby and feel like there's some kind of interaction between them, which if

00:55:11 there's very severe autism already, a parent will impact that significantly. But if there isn't evidence of autism apparent in the first year, that baby will have a very different presentation. If the baby turns out to have autistic features at say 16 months or 18 months will still be a very different baby because the first year went smoothly. The mother and baby were babbling. The child is verbal. He's not a non-verbal

00:55:42 child. the child's had characteristics that are more typical of the other children that the mother had. And so if she's had other children or not, she'll recognize the baby being different enough. Pediatrician will recognize that there's symptoms. And if the baby is on the spectrum, there will be a a different presentation and a different ability to regroup because there's already been a solid first year for example of attunement and attachment. So

00:56:14 these children are vulnerable to the mother's anxiety for sure. I mean if once mother realizes there's something wrong she becomes very anxious and the child becomes very anxious and the baby doesn't want to look at a mother who's looking are you know are you autistic are you autistic and kid looks away when you get this child that very child into a therapy office and you start talking to playing with the baby or the toddler they stop having gaze aversion because you're not looking at them like there's

00:56:44 something wrong with you. So the simplest kinds of interactions can produce a very positive effect and that's what we count on in helping these youngsters. So what about that whole factor of there is something happening that is in the relationship that is much worse for boys. We we we propose because there are so many more boys presenting with autism early on. But now we have all these girls who do not seem to be autistic in the first six years of their

00:57:16 life and then they emerge as being autistic in in shatteringly large numbers. If you I would just say a couple of things in response to that. I'm interested to hear what everybody else thinks. First of all, for while there are some parents who will say that they knew their child was different almost from birth, in general, the reason why uh the measles vaccine like has become like there's so many families who believe that the measles vaccine caused their child's autism, no matter

00:57:46 how many studies have been done to debunk that theory, it is still extremely prevalent. And part of the reason is because that is when symptoms typically emerge. So, a lot of very profoundly autistic people, including my son, had very normal babyhoods, you know, like we didn't Jonah was very social, very precocious with his motor skills. He was um very precocious cognitively. Like he was climbing around the pool table, putting the pool balls in order, you know, in number order when he was like only about 15 months because

00:58:18 he turned out he was hyperlexic. So, he knew how to kind of read and write before he could talk. Nobody taught him, but he just that's it's kind of like a decoding skill, not a comprehensive skill. But anyway, when he was he we were referred for evaluation when he was two and he wasn't talking. But so there was nothing about my interaction with him, you know, during his these formative baby, you know, baby baby months that was anything but normal and he still ended up very profound. So, I'm not a huge believer that that the

00:58:50 parents anxiety is driving the severity of the presentation. Um, of course, there's all kinds of environmental factors that shape a lot of disability. That's what Claudia was talking about earlier with the social model of disability as opposed to a medical model of disability. So, if those aren't, you know, well-known terms, uh, I'll just explain them very quickly. So disability rights emerges as kind of a civil rights and uh advocacy movement in the 1960s and 70s built around by first of all

00:59:22 spearheaded by people with physical and sensory disabilities. uh not intellectual disabilities, but they're kind of making this claim that they are not really disabled because of anything that's wrong with them personally, but because of this mismatch with the environment that you mentioned, which makes a lot of that's that's a social model of disability as opposed to a medical model that identifies a problem within impairment within a person. Um, and the social model makes a lot of sense for people with physical disabilities, right? So obviously

00:59:52 someone is in a wheelchair is way more disabled in a town with no curb cuts or ramps or elevators than they would be in a town that had those accommodations. And people who really embrace the social model fight a lot for accommodations in the built environment uh to support people with disabilities to have the same access the same opportunities as everybody else. But I believe that the social model really fails to account for people with severe intellectual and developmental disabilities because there's no accommodation to the built

01:00:24 environment that we could offer that would allow Jonah to be here today and participate in this conversation. Uh his the medical model really does do a good job of explaining what's wrong with him. His disability comes from something that's wrong with his brain. And uh so I think that there there is some nuance in disabilities conversations now around a kind of saying it's not either or you know that it's both of these things that there are obviously lots of social things going on in the environment that

01:00:55 affect how how dis how how disabilities manifest and we should obviously support people to the uh you know as much as we can. uh but the more severe the intellectual developmental disability though the more I feel like the medical model is a better uh framework for understanding that experience we go back to this idea that this is a diver we're actually talking about probably a range of different disorders we don't know how to separate them and so I think you you two may be talking about different ends of the elephant you know one to the

01:01:27 trunk and one to the tail so I think Susan's highlighting there may be some people at the milder end where we don't know and we can't quantify their medical contribution to it, but there's some. Yeah. But it may not be as profound. And so the outcome may devel depend more on epigenetic issues of this. Okay. I'm sorry. I can't I'm losing patience with the and I and I realize this is unfair. Um and and I just want to say in defense, my my mother was an autism scientist. She's one of the people that

01:01:58 that introduced applied behavioral analysis. She used to be at UMass for many years and and at University of Connecticut and stores. Um so you know I grew up being quite aware of that and you know she didn't know anything about biology. She was a psychologist and that's a tradition that continues. Um and it's easy for me to say is oh gee is a biologist but it does kind of this epigenetic thing jumping on epigenetics. Um, not I don't think I I I I know

01:02:29 there's some flaky work on epigenetics and autism, but I I I I don't think there's good evidence for epigen epigenetics has a meaning. It's a meaning about something that where you change uh you're going to modify the DNA and and get something that it's not inheritable. Although some people doing biology of u autism say it is but they don't have any evidence for this. Um these are these are mostly

01:02:59 uh some of them are monogenic causes. The ones that are monogenic causes tend to be profound autism. You're not getting them into your your practice. Uh you you probably are aware of them through your your work. Um, yeah, the epigenetics thing. I'm sorry. I just I go like, what what are these people talking about? And I realize that it's a little unfair for a biologist to be talking about stuff that, you know, is kind of the what we grow up on and and then applying it to

01:03:31 psychologists and say you're misusing the term. Anyway, going back to it, the point that you're making and and you're making and you're kind of making in a different way is the lumping. If we continue to lump all these together and call say this is all a disease called autism, we're not going to get anywhere. We're not going to get anywhere. So, we already talked about how clinically we're not going to get anywhere because the treatments are, you know, the applied behavioral analysis works great for some kids and it probably doesn't work so well for some other kids. um or

01:04:03 it might be helpful, you know, for learning to tie their shoes and this this is great, but it's not going to, you know. So, um and then there are going to be there already are um ways that these could be treated. some some of these disorders that we're calling autism could be treated probably pharmarmacologically if you could identify it at the right time when the kid we were just hearing how I I'll I'll try to make it short but we were just

01:04:34 hearing how kids are often normal when they're 2 years old and then something starts happening we're just hearing about how the kids often have large heads who end up to be the these are there are biological reasons for this and it has to do with with um how synapses are selected and unselected i.e. improved right during development and this doesn't happen genetics isn't it when you No no I'm sorry J I know we're a couple of professors talking about nomen culture oh wait I but I I

01:05:05 there are synaptic differences if you read the I mean I've read enough literature to see that there are differences in the communication systems that alter at different ages exactly and for and some alter for girls for sure they alter at different age and I think the oxytocin system for example is very protective but if you have a different amount of oxytocin is that not epigenetic you know well okay maybe it's maybe it's the wrong term it's the wrong term but but it's lumped it's lumped in

01:05:38 articles in the literature is so bad modifiable modifiable through experience just if you use that okay let's use that but but okay modifiable through experience through mothering through parent I mean if it weren't the case then I wouldn't be here because what we do is all about helping the parents find a new way to take care of their children and whether you want to call it epigenetic or schmaltz. No, don't call it epigenetic. It's a good schmaltz is a better

01:06:09 So we call it schmaltz and you help them grease the system with schmaltz and they make a better child for themselves and for the child and I don't mean I mean better in every sense because they're more productive. They their IQ's improve. They're able to go to school. They're able to make friends. They go to Dalton and Trinity and all these fancy places having been in a special needs school. They go to college. They go to graduate school. And ironically, the the the more profoundly disturbing ones for

01:06:42 us, you know, are the ones that are more mysterious. This other group doesn't seem so mysterious. But what we find is that they're very demanding because the the percentage of children who who feel whose parents feel that it's hopeless, which we see a lot of, not not you, your heart, you they should all be like you. But these parents who come to us with the children who seem hopeless go downhill. The parents who don't understand the cognitive changes and this is another I call it epigenetic.

01:07:12 the the the uh amount of mileinization that changes over time. Myelination. I call it mileinization because I went to medical school before you did. But but I've looked it up. Okay. When I was in medical school, it's called milinization. It's hard for me to change that back. Okay. But I've been corrected in papers that I've submitted. It's not but we called it mileinization. Anyway, when when you see a child going downhill, for example, at 6 years of age, there's a clear biological reason

01:07:43 for that. The mileinization or mileelination has has increased the ability to perceive the environment, right? So, every child at six can read if they couldn't read before because there's a part of their brain that is far more functional and they can figure out that Paris is in France instead of France is in Paris. They figure out grandma lives down the block instead of somewhere random because their ability to see the world in a bigger picture has become evident to them and everyone

01:08:15 around them. But if you have a child on the spectrum, that may not be the case. In fact, it often is the reason why girls are first diagnosed at age six or seven because when they begin to see the world around them and they realize they don't have any friends, everybody has friends. Everybody belongs to a click. They start to feel marginalized. They feel different. They realize their brains are different. They've been masking and camouflaging and getting by without anybody noticing that there's something wrong. Now they start to have an incredible struggle with themselves

01:08:46 as part of a group, part of a kindergarten or first grade, part of a family, and they start having explosive temper tantrums. They start to hurt themselves. That's when you start to see selfharming behavior and and eating disorders and all kinds of other characteristics that that are just part of the expression of hopelessness and hopelessness but in fact are are diagnostic. the formation of myelin is is a good example really because it's one that you

01:09:18 can do um you do imaging as she does I don't know where the camera is so I'm just sticulating in some way that makes nonsense but it's something that you can do to to to kids right you could say you know is is your corpus colosum which are the connections to the hippocamp uh sorry the c cortical connections are these normal or not um and this is another example of why we have to stop lumping because Rainman had no corpus colossum whereas it's far more typical

01:09:49 for many of the kids to have a very thick corpus colosum. So anyway, it's it's going back to the business about you know that the there is a period of we're calling it synaptic development but it's actually more complicated than that. Make unmaking the synapses is just as important as making the appropriate synapses. Um that is not work we can do with kids. That's work that has to be done with animal models or cells in culture. Um work that is again not

01:10:21 supported but needs to be. Um and u but we could start with simple things like that we can see on MRIs and even there start to differentiate the different flavors of autism and start to realize that you know a kid who's very high functioning probably does not have a an overly an oversized corpus colossum. And this is one of the this is one of the reasons that the kids have

01:10:51 large heads. There's a lot of biology here that's not being that's not being adequately u analyzed by anyone anywhere. U you mentioned I would add this is one thing that makes autism research uh particularly complicated and that is the need for very very deep and thorough uh sort clinical characterization of the participants in research studies and so that requires uh a multiddisciplinary team of you know sort of clinical experts in partnership

01:11:23 with you know people that are interested in the more basic biology and and so on makes it hard and large samples. I think as a neuro imager I think that's some of where we failed the field is that you know the field of neuro imaging started with very small samples that lumped everything together. So you found some things and then someone tried to replicate it and we're all surprised nothing ever replicated. And I think now there's been there was has been we'll see what happens but a move for like way larger studies that can maybe then get

01:11:55 all these subgroups in because if you have and these are very expensive studies too that like is do we have the appetite to do these things going be very costly if we have you know just ADHD I don't know how many hundreds of possible complications going to need to image a lot of people in each of these subgroups that's a very expensive study and we're coming off of the heels of you know the the replication crisis. So there there's not a lot of people interested in doing in funding this work right now. Well, you could do Rhett syndrome, right, which is which is a

01:12:27 relatively rare form of autism, but it's monogenic. It's no longer considered a form of autism because they identified that. So now it's out of the DSM for Christ. It's not considered autism. Well, but I mean that's that's that's great and it shows how stupid the the terms we're using are. Yeah. there there are more uh people on the spectrum who are in the heart sciences and mathematics. I mean I wondered if you want to I'm going back to the idea that this these genes that might

01:12:58 contribute to profound autism or ADHD um may at the shallow end of the the healthier end of the pool confer some sort of advantage. So what is that is is the idea that mathematicians or physicists uh types tend to be more uh more often on the spectrum. Is that meaningful? Sure. Yeah. and speak about um looking at hyperlexia for example and and other forms of um special expertise and you

01:13:31 know clearly these seem to emerge in part at least because uh someone is able to focus and um spend an enormous amount of time engaged in a very specific uh topic or domain and and think a lot about that and and spend to spend a lot of time on task uh engaged in that kind of um um processing and surely that confers uh some significant advantages

01:14:02 in in you know other other aspects of life. The famous Einstein didn't speak till he was four right so now he would be diagnosed with language disorder which is difficult to separate from autism. Well, my sense of the uh psychoanalytic sense of of the mother baby relationship is such that there's a scaffolding that takes place where the baby understands what's happening between mother and baby

01:14:32 by virtue of all their sensory systems and by virtue of an ability to predict. So once the mother comes to the door, the baby's crying, gives the baby some milk, the baby puts together this pattern. Ah, I cry. My mother comes to the door. I get fed. I feel fine. And after a few days of that, the mother's coming to the door and the baby stops crying before it gets fed because, oh, I heard my mother coming to the door. I predict I will not get fed. And our understanding is that because of our

01:15:04 social nature, the socialization piece trumps hunger. So baby stops crying because now it's more important to the baby that mommy came to the door to take care of me than that I get fed. And our guess, this is my theory, hasn't been proven because I can't. The the children who are on the spectrum are not able to do that kind of scaffolding and predictability. Predictability is less or non-existent to some extent depending

01:15:35 on something that again I have no idea how to explain. I'm sure could explain it to me, but but we we see this in practice that children on the spectrum have a terrible time with transitions. It's very hard for them to predict what's going to come next, no matter how smart they are. So, we we have all kinds of activities in our groups to help children manage the transition from the waiting room to the playroom, from the in and out of activities so that they can not be

01:16:06 surprised. Surprise parties are the worst for children on the spectrum. They do not want to be surprised. I often ask audiences, how many here would like surprise parties? And no one on the spectrum wants a surprise party. However, that has nothing to do with their intellectual ability or their capabilities. But what what we do find is that instead of prioritizing the social relationship with mommy because of the unpredictability issue, a baby on the spectrum is much more likely to pick up something hard like a car or a rattle

01:16:39 and become attached to that because that is predictable. So they move from the car or the rolling back and forth to a telephone. Now you get telephones at two months old because they're very useful to keep the baby quiet. It used to be six years old, but now literally these children are attached to their phones and then they become engineers. I mean, makes perfect sense that they apply their brilliance to doing something that's not about a person. It's not a

01:17:09 social science. It's a hard science. And that's why the answer to your question why you see so many more people on the spectrum doing hard sciences doesn't change this interest in things also in inadimate things and repetition right sort of yeah well the the rep repetition which is predictable with a mother with a social sense is always positive but it's also

01:17:40 variable is the ability to accept the variability of mother. Even though it's always mother, she's never the same. So that's innate. That's Darwinian to accept the the variations. But children on the spectrum to one degree or another have much more trouble with those variabilities. And that's part of why it's a spectrum. Yeah. There's a social model of ADHD which says something like boys are shouldn't be expected to sit as quietly as girls

01:18:10 in school and that and enforcing that sort of discipline can be bad for some of those boys. There is a sort of gender asymmetry in both of these both ADHD and autism. Right. It's interesting. And um and now what one of you mentioned that uh what oh people on the internet looking to be diagnosed with autism and how much is that a reflection of the sort of perhaps the isolation that some of these children are experiencing now because they're interacting with things

01:18:42 like their phones and the internet more than they are with other people. I wonder what what you think of that. I think to go back to the the boys versus girls with males and females. I think the what we end up seeing is that boys with ADHD tend to have this sort of symptom pattern that's a lot of exuberant sort of attention calling behaviors. And it's not that making making them sort of press that back. It's just that that's sort of if you see

01:19:13 in the large samples that's just a phenotype. Like boys tend to have this sort of hyperactive onset earlier, females more interact um inattentive sort of later and the females get missed because the behavior is more rambunctious. So it's e it's comes on earlier and that's why it's identified and sort of many girls go untreated for longer because they maybe had some of these more inattentive symptoms that just they're not quite as disruptive in the classroom so they don't get caught up until later. So I wanted to you know it's it's not that we're making the boys have ADHD because they're telling me to sit down. It's just that they're sort of

01:19:44 presenting with this behavior that's much more disruptive and that's how it's getting caught. Um, squeaky wheel gets there's a similar finding in the autism literature uh which is that autistic little girls tend to have um strong and repetitive interests in topics that are more sort of age appropriate age appropriate and typical. So, where boys have interests in things like Russian tanks and Norwegian mythology and electricity and the Manhattan subway system, uh, little girls might have

01:20:14 interests in things that are just a little more um appropriate like, you know, flower taxonomies or um uh taxonomies of American Girl doll and and and their experiences or or other things that may seem a little less uh unusual to people. Well, I wonder um this has been wonderful conversation so far. I wonder if we can open this up to the audience and see if there are any questions. If you do, please come up to the microphone.

01:20:47 So, um maybe maybe what I'm seeing here is good. Maybe what I'm seeing here is a second opinion of sorts, but um since you're all doctors and PhDs, but I was recently diagnosed with at the age of 50 with um autism, high functioning autism spectrum disorder. And uh my my my counselor who's a PhD psychologist, I felt that he was a little too eager to

01:21:18 diagnose me. Um, and I saw that I listen to podcasts often and they said that one one of the diagn one of diagnostic criteria is that you need support for your autism. Now, I don't get support for my autism. I get it for bipolar. So, I don't know if that counts. Um, but another thing I was thinking is that uh I lost I lost my mother uh shortly before I turned seven. Now from my rudimentary medical education I know

01:21:49 that analytic depression is the the the upper limit is age two but I know that that profoundly affected me and I was socially um so I was thinking perhaps that could have been what my problem was rather than autism and I've never fully recovered. Um I know Dr. Lut said that autism there's repetitive movements and I kind of do that. I have like these twitches and whatever and social impairment. Well, I've been socially delayed for most of my life and

01:22:21 Dr. Saltzer said lumping and so maybe what whatever I had from losing my mother was lumped into autism and it really was something else. Uh I know that's a lot, but does anybody have any thoughts on that? I think so. I think you're right. I think you're lumped in. No, I don't know. Well, when someone comes to me as an adult, I ask their mother to give me a

01:22:51 blowby-blow description of the first two, three years of their life. That's how I make a diagnosis whether it's a a boy or a girl. So, unfortunately, we don't have your mother to ask. When I say you're lumped, it doesn't mean you don't have a disorder. you may have a disorder, but that to say that you have the same disorder as her son is is no. Yeah. You also could think, well, you know, we use these words and we don't realize how much they carry, how

01:23:21 much meaning they carry. So, I have my problems, you'll say, are maybe due to X and not the Y. And the thing is, you're just one whole person. And so, you may have problems. Everyone has problems, right? To some degree. And some of us have a lot of problems. And some of us are lucky and have fewer, but we all have problems of some sort. yours are are probably a composite of all these things. They're not just one thing. Um, you know, if if someone were to be forced to choose, and I don't know enough about your history, of course, but that was very elegantly described

01:23:52 very quickly. Anyway, um the um I can imagine someone saying, "Oh, most of his problems derive from his bipolar disorder, not from the fact that he has an underlying uh ASD diagnosis." That's a possibility, but I don't know. It could be right. Okay. Problems carry a lot of meaning. That word that single word problem and diagnosis as well. So I wonder if some of the pressure to diagnose you or others as autism has more to do with insurance so that you're covered by Oh, I'm have no inner

01:24:26 knowledge and it's just a a curiosity. I I totally agree that the at least in the case of children, the pressure to um diagnose uh is strong because that will lead to significantly better supports in the in the special education system. Um and over the lifetime, right, that's easier access to um an autism diagnosis gives easier access to things like social security disability um supports and so on. But I I wonder if this

01:24:57 gentleman, you know, the the focus on on sort of pinning a very precise diagnostic label on you. I I'm I wonder if that would be the most helpful thing or if rather the most useful uh approach is to really focus on what supports do you need and what skills could you you work with your counselor to help build skills to to enable you to, you know, figure out how to how to start and and maintain social relationships uh more

01:25:27 effectively. And um there are social skills groups even for adults with autism that um might prove useful or might prove helpful and and learning some learning some basic strategies might be a really um a really useful thing regardless of what diagnostic label you fall under. Thank you. Uh I'm asking about the efficacy of psychosocial interventions. In other

01:26:01 words, how how are they reported, right? H how how how can we actually are or there have been studies done of that? Do do we know what what the statistics show? Yeah. At least in the world of ADHD, there's a very well doumented and sort of carefully conducted clinical trials of behavioral interventions. And the behavioral interventions can go from individual therapy with children with ADHD. It tends to look a lot more with parent

01:26:31 training to manage the children's symptomatology. And there's there's many interventions, each of them sort of with their own body of evidence. Some work better than others. Um, but there is a very, you know, there was a lot of work done of that. you know, a couple of like a decade or so ago following I would say the same level of um rigor as as medication trials. And adding to that, in the autism world, we have extensive evidence that the most

01:27:02 uh effective and high impact thing is early intensive behavioral intervention. And um the most effective approaches are grounded in the principles of ABA uh applied behavior analysis which says that humans are really good at at learning contingencies between temporally um close events. Um but the the old style of ABA where a kid sat at a desk and somebody said touch blue, touch blue, touch red, touch red and they did 10 trials and so on. that has

01:27:32 really given way um to much more developmentally appropriate and naturalistic um behavioral interventions that respect in children's individual preferences and and sort of family um family goals and and that are kind of grounded in the social millu much more effectively. But um there's extensive evidence that the earlier those interventions happen the better and that those are far and away the most effective uh modality. So early

01:28:04 intensive behavioral intervention is is the watchword uh for autism uh treatment. The gentleman was asking he just clarified about the statistics involved and it it is the same statistics that you would see in any randomized clinical trial. the the you know the the crux of these either it's a pill or a social intervention it has to do with random assignment proper control of confounders of um blinding the intervention seeking comparable um sham groups or weightless controls but it is

01:28:34 the same statistics that we all rely on to you know make our up our mind about whether an aspirin works for a heart attack or not. It's the same statistics. Oh yeah, I have a question. Take your time. There there is a place or there was a place called Institute for Music and Neurological Function. Are they still in existence up in the Bronx? I think well the M Oh, that one. Music and

01:29:05 neurological. I thought you were talking about the Gordon Shaw thing which was called Mind. No, Institute for Music and Neurological Functions. No, I don't know them. They have been very, as we know, music is very powerful with Parkinson's. Music is almost a drug. And um I'm Do you have PD? Excuse me. Do you have PD? No, I do not. Okay. My husband does. Okay. Um my question is, now I don't want to sound artsy fartsy because music is so powerful for the CNS. Has Jonah

01:29:36 responded to music at all? um music and rhythm of movement or do any of you have anything to say about music, autism, ADHD, Parkinson's as something you take seriously? Jonah loves uh songs from Sesame Street and he will play them on his iPad. And as far as his movement, he does uh when I mentioned spinning literally, he often will I mean I think a lot of kids with

01:30:08 autism have altered vestibular systems because he can spin so fast that none of my other kids could ever spin like he could. He looks like he's on ice skates and he will whirl around uh kind of this big room in our house and listen to music. But I don't think the music um I mean when we did kind of like mommy and me music classes when he was little but I don't think it like had a significant impact on his cognitive development.

01:30:39 I mean it's definitely something that he leans heavily on. He spends a lot of time listening to these songs. It's interesting like he he doesn't watch any contemporary any like current episodes of Sesame Street, but he now that we have um the wonders of YouTube and very kind people have uploaded the kind of VHS compilations of of Sesame Street songs. He that's what he finds and he'll just listen to like the songs or just fragments of the songs um over and over

01:31:09 and you know what what the what meaning that holds for him. I I I don't know. Well, it raises an interesting question of whether something he likes is also something that's therapeutic and they may not be the same thing. He might just like it, right? And yeah, I don't know. Yeah, there's quite a lot of lovely evidence that autistic people are much more likely than in the general population to have perfect pitch or absolute pitch, right? To be able to tell you what note um something was. Um, and we see a lot

01:31:40 of heightened musical skills in autism. And unfortunately, the the music therapy literature is small and a lot of the work is not very well control. Doesn't include randomized double blind um kind of of trials. But I do know of at least one study that used functional MRI and a a sort of a tin I think it was a 10week um music therapy intervention and found pretty strong effects in a in a an autism group. Um a partner

01:32:12 is the first author on that that study. Um so I think that's an area where there's some real promise for the future but our knowledge base so far is is really thin. I went sorry this the our our work with babies or toddlers always starts with music. We make up songs together and just little what I little dumb stuff with the musical instruments. We make music. We I can't sing so I sound

01:32:43 terrible but we start with we make music and we all sing together the mother, the baby and me and and sometimes it's all about making music and it's very therapeutic. It gives the baby a sense of togetherness, but it's also something that they can rely on. And we use music throughout the all the groups that we do. Part of each group is involved music and dancing and the the kids just love it and feel connected in the same way. Um because music does connect and it's

01:33:15 the same. So it's got the predictability. The lyrics don't change. My voice changes. But uh it's it's very important. I want to thank our panelists for fantastic discussion today and everyone's attention and we're looking forward to seeing you all in the fall. So thank you again. Thank you. [Applause]