i'm going to be conversation

with dr. lots. lots is going to talk a little bit about her book which just came out today. the book is chasing the intact mind how the severely autistic intellect disabled were excluded from the debates affect the most. so i know that will be of great interest i know a lot people in the audience and afterwards we're going to have an audience q&a and then dr. lutz be going and we'll sign books and we have a little reception with her. so that's our deal. first, i also wanted to thank we've got celebrities in the audience tonight, but there are few that i really wanted to point out, just for starters, we have paul aronsohn, who is the new jersey state ombudsmen for people for with intellectual and

developmental. so paul, thank where i see him. thank you for coming back. they're great. i'm hiding behind behind alison's singer who is the executive of the autism science foundation that going to talk about a little bit later, alison and and we want to welcome back zucker you may see karen's poster in the back we were so pleased to launch karen's book with john donvan in a different which we also have they've also done a great documentary about it too. and i recommend that book to everybody. so our tonight it's dr.. amy assaf. let is the historian of medicine at the university pennsylvania, the vice president of national council on severe autism and csa, and the parent of a profoundly autistic son, jonah, age 24. good choice of names.

thanks a lot. she's written about profound autism for many platforms, including the atlantic psychology today spectrum slate. i'm most recent book that i've just talked about just published today. so you guys are all getting to see it right on the publication date. and we're so thrilled that dr. lutz has been kind enough to come today on publication date with us. and she's also the author of we life with severe autism in 2020. and we did a virtual in conjunction with the autism science foundation on that one during covid. and each day like it better autism easy and the treatment of our most impaired children and you were here for that one. so we're thrilled to have you on and the next one, we're going to have you back for that. we're already reserving it. dr. lutz lives outside philadelphia with her husband, who's here tonight as well. and whichever of her kids who happen to be in town. so let's give a huge round of applause to dr. angela.

so for those of you, those people in the audience who may know, you could tell us a little bit about your and how you got involved with autism. well well, first of all, jonah, i really have to thank you so much for having me again, for all your support, for every one of my books. it's a privilege to be here to launch it today this could honestly fill the entire time you how i got here because was a pretty convoluted journey. my original background is in i had a graduate degree creative writing and thought i was going to write the next great american novel. and then when my oldest son was diagnosed with autism and it became increasingly evident how severely affected he was by it, i started writing more and more about issues relating to severe autism. and then just, i think years ago

i decided i needed, you know, i needed to figure out exactly how we got to this place where the autism is so fractured, so i did what any curious normal person would do and went back and got a ph.d. to figure it out. and i just defended a year ago last may and just was hired right back on to the faculty at penn. and that's so the book, the chasing the antique mind, the the project i wrote for my dissertation to actually answer the question like, how did we get here? what is driving autism discourse today? and and then here i am now. wow. yeah. i meant to mention that. elena and i also have a son with. profound autism. we have two children, but one. so we're so grateful for your work and amazed that you're able to do all that with all the kids and to go back, get your page, did what you to write this particular at this particular time huh so i've been in the

advocacy space for more than two decades and i'm like a hopeless optimist. so i keep thinking certainly things going to improve. you know, i was really drew me into the advocacy space besides of course having a severely autistic kid was kind of this mismatch between our life at home where we were dealing with a child that was very aggressive self-injurious. and he had a terrible problem with elopement and we were living in crisis all the time and i was reading about, you know, these kind of geniuses who were singing with rock stars or, you know, a basket to win a game and high school basketball. or then there was sheldon from the big theory, you know, and i was like, this isn't this isn't what we're living. so i everything i've written has been has had the greater purpose of shining light on the severe end of the spectrum. and then i started to connect

with other people, other parents who were brilliant and doing such great work in their own. alison singer is the first person, my first friend in autism world, my first real ally, and then after her i met other people, i met caren zucker, met jill asher, i met lisa perls, i met all of these other people. and i thought, geez, you know, we are to make a difference now. we're all finding each other. we're not all working in isolation, but in fact, we just kept losing more, you know now we're in a space where if you go on twitter or tiktok, you can hear people say there is no such thing as severe autism. actually and everybody is has just this normal or even intellect inside. if you access it with the proper diet or the proper intervention or through the proper pseudoscientific communication aid, you know. so i was i was really interested in this idea. there is a normal or genius intellect inside every autistic

person. no matter how seemingly impaired they present. and i was like, where this come from because we don't talk other intellectual disabilities in the same. so no one talks about kids with syndrome in that way or kids other types of genetic syndromes or other congenital abnormalities and. i'm a historian of medicine, so that's what i went back into the history to see. if i could trace the emergence of this intellectual idea. so in fact, and i think you've largely answered i wanted to ask you about with the title, maybe you could talk a little bit more about the concept of the intact mind. because you you know, i love the book of the first word, the title. i wasn't sure exactly what the thesis. yeah so the intact mind is this just exactly what it sounds like this kind of normal or even genius intellect hidden deep inside people who present as

very severely autistic and this is very hugely prevalent in autism. so, for example, i'm just going to i figured you're going to ask about the definition of the intact mind. so i just wanted to read you some examples. the archive that i used to kind of prove my argument throughout this book was i read about 80 parent memoirs from parents of autistic kids of all different functioning levels just to trace how idea really gets amplified in this particular genre that that how so many are just picking up a memoir about autism. that is the idea that presented and i should be clear in a lot and in bulk of the memoir is the intact mind is accessed but not in all of them. so even parents who have profound autistic kids who are still profoundly autistic at the end, they don't access the intact, but they still believe it's there and their to access

that intact is kind of what drives the book, even if at the end they're disappointed, doesn't they're still speaking of it in that language. so this is just one i'm just going to read you one paragraph because i was warned that no one wants to hear authors read from books anymore. so the critical element and i figured this is just super important that we're all on the page with the intact mind. so critical elements of the intact mind are its innate ness, integrity and inaccessibility, at least at first. in other, there is a profound disjunct between the child's inappropriate, destructive of or even aggressive behaviors, and the capable self that has always been hidden deep inside. and this just quotes from some prominent memoirs you might have read. barry kaufman, who wrote sunrise like going back to the seventies, for example, describes the, quote, vast field of intelligence that we felt existed beneath the of his son.

ron's bizarre patterns. catherine morris, who wrote let me hear your voice and other hugely popular, a memoir about abba catherine, where she her daughter anne-marie as quote, wild in by her autism and is determined to assault those ramparts. robert hughes writes of, quote, the normal boy hidden just under the silent surface of his son walker and in a more much, more recent book, judy barron recounts, quote, we caught rare and fleeting glimpses of a helpless child trapped the bizarre behavior of shawn's autism. and we were determined to get him out. shawn and i have written the story of his release from the terrifying imprisonment, his own mind. so idea is in just so many autism memoirs and so half the book is just an analysis of where does this come from? doesn't reflect. i don't have to tell any of the parents in this room that this doesn't reflect anything

biologically true about autism. so trace its emergence to psychoanalytic theory the middle the early kind of the mid third to mid 20th century and you know going forward and the second half of the book talks about how it says three case studies from our current moment and makes the case that the assumption of the intact mind is foundational to much policy and practice affecting kids like ours today. so kind of had a writing question about the two sections. how did you decide to divide it into two halves? and what i enjoyed is i'm trying. remember last time i read this where it says, you know, you can read the first half or the second half in isolation. it's to read the whole thing, which i highly recommend. but for people who are more interested in or the other can really focus on that. how did decide to do that and? i'm just trying to decide.

any of my colleagues are going to hear this. besides, i do have a here, so i probably confess that my my interest is really in how these issues affect our present moment has always driven my interest in going back into history to see how we got here. i knew i wanted to talk about the history. i also needed to show why that mattered and to show how can use that understanding of the history to understand why we're in this position where we have to defend. there is such a thing as severe autism and not everybody with autism can hold a competitive minimum wage job or live in their own apartment or make their own decisions. you so so i knew i wanted to to cover both those things and i guess if i was a better writer would have a nifty transition that would make it flow one organic piece, but instead i was just like, i'm going to write the history and then we'll do the case studies. well, i thought it was great i thought the bold sections were

very compelling, but there it's it's great that that have that choice. so you talked about 880 memoirs of people families. people thought that was a staggering to me. what was that like? and, you know, first of all, how did you do it then? i mean, that's what writing and writing a dissertation is about a ton of research. and i think that i lucked out because i decided on what my archive was going to be was i mean, the only likely i might be the historian of medicine that didn't write my dissertation using an actual archive, you know, a place where people go and they look old documents and stuff. but it happened to be very fortuitous, right? as every one of my cohort was beginning to work on our dissertation covid hit. and so all the archives were closed. but i was able to access all the i was very into because i was interested in discourse how people are talking autism. i was only interested in in published sources because it didn't really wasn't really important to me how leo kanner

was writing about autism in some private letter to somebody. if that didn't affect how he was writing about it publicly. so i was able to access everything needed and. reading the memoirs was amazing because just kept finding more evidence of, you know, went into it with a certain hypothesis. but i didn't know that i was going to find so much about the intact mind. i didn't know it would be in virtually every memoir that i read. again, whether the intact mind was accessed or not and, some of the most brutal memoirs were the ones where the intact mind wasn't accessed. and and you got and the and the parent just talked about the glimpses that they saw. they still believe the child in there, even though there was nothing they could do to kind of access that hidden intelligence child was still a threat to, you know, couldn't be left alone for a second. and a threat to her himself or somebody else. and the parents were kind of trying to reconcile the their

their child's need for a lifelong round the clock care with this belief that the child was actually a genius inside only if only now, just for well, for me and for our audience is this concept. again, i've many books and a lot of them are involved with that wasn't really aware this was a central issue in this in disputer disagreement. i guess what i'm to say is that i feel like you framed the discussion in a different way my mistake in that common distinction the intact mind and not having intact mind or is this something really know an original. no, i think that people are not talking about it which is point i make in the introduction. that is that even this assumption is foundation too. so many of the policy debates we have right now, nobody is making it explicit. so nobody's saying, you know, i

think that we need to get rid of 14 c because all these people are geniuses inside and we're infantilizing them by, you know, putting them into 14 c programs or, or day programs. they're just kind of, you pushing these policies, which sound great until you kind of expose that there is this assumption at the root of it that doesn't match the reality of life on the ground for for hundreds of thousands families. i mean, we know now since since the book went to press, you know the cdc has released prevalence numbers about the illness, about the prevalence, profound autism and eight year olds today and you know, the cdc looks at at eight year olds and so this is just about eight year olds. but of autistic eight year olds, almost 30% meet the criteria for profound autism, which includes iq less than 50 minimal or no language and the need for round

the clock supervision. so this is not we're not talking about some fringe couple of people you know my son and a few others this is a of individuals who are profoundly autistic and who are kind of shoehorned into a system that it's now being built reflect this you know this intact mind and all these hidden capabilities that our kids that my son he just doesn't have. i guess what really struck about this is and there are autism families in the audience and people are trusted that autism organism organizations around here. even within our profound autism community, we usually walk around saying, oh my, we might discuss the challenges that our children face, but we don't really come to grips with the fact maybe their mind is not

intact somewhere like a typical person. that's what i'm to say. you're not only in some ways coming up against what you're talking about. the popular misconception. i'm saying even within the more profound autism community, it's a different way of framing it, i think. oh, 100%. i mean it. what one of the things one of the main drivers of the intact mind is the hope of parents and i felt that hope and we believed it. i mean, when jonah was was a toddler, he hyper like six so he could read and right before he could talk. so we really believed that he was going to. and my husband, who's up here, used to joke that he was going to be that kind of a socially awkward mit student. the computer nerd wasn't so handsome, but all the girls know, like he wouldn't even recognize that the were interested in him. he'd be too busy on his computer, you know, of course it didn't turn out to be that way.

um, it took a long time for before i became comfortable, you know, accepting jonah's profound limitations. you know, i remember the crazy things we used to do. i just for some reason what sticks my head is when he was like, eight or ten trying to get him to watch like, um, like a marvel movie instead of sesame street because that was more age appropriate. like all these things that were so important to me at that time. and now he loves sesame street. okay? so he's always going to love sesame street. now, everyone in my house has an unbelievable, deep knowledge of sesame street. we talk to each other in sesame street all the time in our house. but not all parents give that up. so you know one of the chapters of one of my case studies is about resurgence of facilitated communication, which, for those of you don't know, is an intervention in which a profoundly autistic person is prompted and supported kind of spoke out messages on, a letter board, but with physical

support, some kind from a facilitator. so either there's actual physical touch to elbow or hand or shoulder or sometimes the facilitator is just holding the letter board. but the communication cannot occur without that physical support and this is not new the facilitated communication was brought to this country in 1989 and by the mid 1990s it was overwhelming shown that the output fc is controlled by the facilitator, not not consciously kind of the way we do board works, right? nobody thinks they're moving the ouija board, but in fact they are and this has been shown overwhelmingly through dozens of controlled studies and now it's just roaring back. and the only reason i can think of despite in the face of all evidence that parents basically turn their kids into puppets and have no to do any testing to show that that the communication that's coming of them, which is always incredibly sophisticated

and articulate, like poetry or a manifesto, is about what it's like to be disabled, you know it's never like, i want peanut butter, which is what like jonah would say, you they just need to believe that intact mind is in there. virtually everything associate with the good life. that's like a term from philosophy. the good life, you know, meaningful career, reciprocal, like romantic relationships, travel, interest in politics or philosophy or, you know, anything that all requires an mind and all of that is going to preclude it for he'll never have any of that. so i understand how that hope can be very powerful. and i have no blame for for parents who, um, that keeps them going because sometimes you need something, you know, you're so you chose three, you three

issues to you just talked a little bit about three communications. you talked shelter workshops and also i thought maybe you could talk a little about why you selected those three and a little bit about the the other two. yeah. well, part of the reason i kind of there are so many, that's i've written a lot already about residential settings and, and kind of the crazy rules and pennsylvania you're not allowed to build any larger than four people because anything larger than four people is now considered an institution. you know, four, four comparison. willowbrook had 6000 people in it, but somehow they were no longer allowed to build more than people because that's an institution. so and that's predicated on this idea that everybody can live and thrive in their own individual homes in the community, and nobody needs, you know, structured, large, structured to keep them safe and to, you know, enable them to to to have

maximize their quality of life. but since i'd written a lot about that, i was like, i want to write about something else that i knew i was going to write about that because it was just surging around me and i couldn't believe it. so i definitely wanted to do deep dive into what was driving that phenomenon and guardianship ized decided to write about that a few years. it took me a while to get around to it, but a friend of mine was at the world, like a world autism day that was sponsored by the u.n. and the chair of the united nations committee. disability compared guardianship to genital mutilation and slavery for how gross a violation of human rights it was. i thought my friend was speaking hyperbolic so i actually went on the site to find the recording and sure enough what she said and i was like, oh, congratulate joanna. you have capacity because the united nations says know says that you do so again a great mismatch between. the reality of severe autism,

the discourse around it and the 14 c discourse is deranged in the spear in the actual experience of families who it who thinks a who think it's a great setting for their kids the kind of the claims by a lot of include and or neurodiversity advocates that basically paint 14 c which used to be known as sheltered um as a program which basically these, you know, capitalists, these evil capitalists are getting rich off the backs of, you know, impoverished people when in fact almost all 14 c programs are run by non profit community rehab agencies. and to me, the most statistics i compelled in that i collected in that chapter was from the united states civil the committee on civil rights did a investigation into c and they whether or not

we should eliminate it as a not on a nationwide level several states have already done that and they had an open comment period from the public. they received more comments than they had received on any other issue. and 98% were in favor of keeping 14 c for all the so many reasons and they still recommended elimination anyway because they privileged the voices of self advocates who would never need that kind of a setting but who talked about how offensive it was and how ableist it was. and, you know, so i was like all i need to kind of well, explain all of that. i think the problem comes in, it's kind of like will brook did we i'm sorry, it can be night. dan barry who lives in maplewood and it's been restored but but did a fantastic exposé when you say it's not done these capitalism never taking vantages. yes once in blue moon it really is done that way 9% of the time it's not. but he wrote a book, an exposé

of one of the times when they really were taking people. but then the problem is people myth apply these horrible examples. it's just like the willowbrook, that and guardian shipped it to me, it's the most shocking because before my son was diagnosed i was a trust lawyer and the idea idea of abolishing or limiting guardianship is just absurd and, very upsetting. i mean just to be clear, there are abuses that under guardianship, they're abuses that happened 14 ce they're abuses that happen in kind of, you know, larger residential settings. but there are also abuses that happen when those protections are not in place. right. there's this is a very vulnerable population we're talking about. there need a lot there need, a lot of oversight, a lot of involvement of family. you know, there's but basically specific settings don't like abuse and neglect people. it's kind of people actors within those settings that that do that. so i mean that opens up all other kinds of issues about, the

funding and the types of kind of staff that we have working with this population. but that was like maybe that'll be the next book. so we're or sales proceeds. today's event for those who buy the book to the autism science foundation to and csa, the national council on super autism. i was hoping you could tell us a little bit more about ncsa. i know you're vice president. you are so proud of my involvement with ncsa i've been was one of the founding board members. it's the the brainchild of jill who was in california. and she kind of reached out and brought together so many advocates who were doing kind of similar work all across the country. so allison's involved with ncsa. lisa charles is from new jersey. some of you may know, and just people from kind of all over the country. and it's a great resource for families. i really encourage anybody has an effects who would love some

of the profound autism or just if you work with people with profound autism we have a great website with all kinds of position statements. we do a lot of advocacy. we don't provide any direct services, but we really are very interested in just we are very persistent about demanding a seat at the table. like if you're going to make policy that affects our population. can you please invite us to discuss it before? you do that before you'd make any before you get rid of any settings or change any policies that really are targeted specifically towards our kids. get some of the parents, siblings or providers who work with this population to weigh in the impacts. because i mean the big point about this book is that the you know, it seems like oh it's a book language you know language that helps attract you know, who cares. but my point is that there are material harms harms in the real world that happen to real people

because of these because of these language debates. yeah. so i'm about to throw it open to audience questions. i'm going to you something that i know. i'm opening up a pandora's box a little bit about it, but maybe you could tell the audience a little about some of the struggles and why is a movement for profound separatism. you know about the it's a little about the history and the changing in the oh about the name, the name, the name and know the name and why the need to have a change in diagnosis and about excluding people from debates that affect them the most. yeah so in 2013 the american psychiatric association got rid of all the different subcategories of autism that we were all used to in the and statistical manual fifth edition. so no more asperger's if you thought you think you know some with asperger's you don't because there's no such thing as asperger's anymore also pd a.s. you know all the different kind of different category a's,

different diagnoses people were given and everybody now gets the diagnosis of autism spectrum disorder. and there are kuala fires and levels that were built in, but nobody uses them. so just everybody is autistic now you have someone like ellen and you have someone like my son. and there maybe they're both autistic or um. and so very quickly, i think a lot of parents and providers and doctors, researchers has found this to be enormously unhelpful. you know, like you want to do a study on autistic people. well, what does that even mean? and how you find the subjects, you know, that are relevant? and just because you do a study on some very high functioning autistic people who can answer uh, you know a survey or get into a scanner. it doesn't mean that's at all relevant to people like my son, who are in the more severe end the spectrum. so just a couple of years ago, i'm forgetting the date now, but the lancet, the british medical journal, pulled together commission of, i think more than

30 stakeholders. if you're interested in this, alison was involved in that. so you can ask her about it afterwards. um, when they created virtually they put out like a 60 something page report, the five year plan for autism but all everyone was talking about think in the time after that was this sidebar recommendation of introducing a kind of a, um an administrative term is what they call that i don't even know what that means it's not an official diagnosis because that would have be they would have to come from the apa but for profound autism that would have the criteria that i mentioned earlier iq below 50 minimal or no language and. um the need for round the clock supervision and the goal was just to make sure that this population is made visible and that researchers, clinicians are focusing on this very needy population, which we know from other studies is pretty much excluded from a lot of research because kids can't really follow

directions. you can't put them in a scanner, you can't ask them anything. um, so we all, you know, i thought this was phantom tastic and i will say that this profound autism is really getting up quite a bit that cdc, as i released prevalence numbers for profound autism they use that word but neurodiversity advocates who are overwhelmingly, you know, very high functioning autistic adults who consider autism to be an identity, not a devastating impairment. they have been fighting this every step of the way because they think, you know, all autism is. you know, is unitary and they are functioning. you know, kind of is fluid. and, you know, it's it it's difficult. and most of them never met anyone with profound eyes. i have to think that that's what drives this debate, is that a lot of people have not met anyone with autism and. uh, and it's hard to imagine what that can look like if

you've never actually with someone with profound autism, that's part of mike. i think that's super important for anybody, any policymaker who's considering legislate and that affects our kids. how about just spend like just a few minutes with our families and, you know, see for yourself what looks like and why we say no. our kids will never hold competitive minimum wage jobs. and no, it's not because. we're overprotective and we underestimate them. you know, i have five kids. i can't i'm like the last one is kind of lingering out like a launch. launch already. i don't you know, i never wanted be a parent forever, you know, doing this act of care forever. and i don't think any parents do. so the idea that we're somehow holding our kids back is kind of ridiculous so we're going to now open we're going to ask you to wait until we bring mic over. i believe that ellen's going up. pam's got a question and then call on people. have a look at you.

thank you so much. hi. hi. so noticing that you're using the terminology autistic pat and i own a business and we employ people with autism and we when we describe what we do because we will say people with autism, you could offend somebody, just care is to help us learn. and from expertise on that yeah i will say i have an essay in my book we walk where i talk a little bit about that particular issue, you know that i thought it so ridiculous for so long that we were fighting over a person with autism versus autistic person. it took me literally years to remember which was the one that the neurodiversity liked. and i honestly didn't care because i knew my son actually didn't care. and i thought they were both respectful. now it seems clear that a lot of autistic who care, who are involved in neurodiversity prefer that term.

autistic adults. but. but not everyone does. and i will say that i have an article one thing that i've learned recently is actually i that most autistic adults do not identify with the neurodiversity movement and actually consider themselves allies to parents understand that are profoundly kids are very different from them so and that's because autistic adults have been reaching out to me every time i publish something so another one kind of reaches out and says i really thank you i really i agree with you i just want you to know that so i have article coming out on spectrum which is an online autism big autism journal that i co-wrote with an autistic adult. and it's about all the common ground that so many autistic and parents share. and one of the so one of the things we did was i interviewed, i interviewed three autistic adults and she interviewed three parent. and one of the things that emerged from that conversation is we don't care about language like i think that the people who

are so invested in that autism versus autistic adult distinction just. i think we have so many bigger problems that we need to be talking about so in my opinion, as long as it's respectful, you're not going to please everybody. and i think that people do recognize that. so if you if you want to ask their preference, you can think that kind of most reasonable people are are not going to be getting worked about that. and if they that's a thing that they're like they're going to that, you know, that's that's their line in the sand, then you're probably not going to get very far for a lot of other reasons. i mean, personally, just what i think this is this is one of the few issues that i think i have disagreement with, doctor, a lot, but i'm not going to i'm it's your night, so i'm going to refrain from i'll refrain from the counterargument but i go with individuals with autism. well, i find you're referring to people want to call themselves

autistic. that's fine. but to call my son, that i find offensive. i mean, i just usually go back and forth honestly, depending on the how it fits syntactically in the sentence. but i become so aware that that so many neurodiversity activists care a lot about that, that i usually default to that just because i'm usually making much bigger argument and i don't want people focus on well i can't get past this that you call me person with autism i'm like, all right you want autistic. here it is. then can we talk about this other, more meaningful? and i certainly agree with you. we got bigger fish to fry. so that's true. our next question i'm looking thank. hi. i really admire your ad because say i just want get that out there but i am kind of fascinated about this and i do have other things to worry about but i'm fascinated about the facilitated communication because my mother lived in upstate new york. i went to visit her neighbor,

work for the iraq, and we were all sitting in the backyard drinking white wine and talking about stuff and cheese and son had been diagnosed by then. and she said, you know, we got came to the ark and we wanted to facilitate. they wanted facilitated communication and we said no. yeah, it's, it's it doesn't work. it's a waste of money. we won't we won't pay for it. so i'm stunned that. is this a consumer. issue? yeah, for sure. i mean, there a miss my school district is fighting off a lawsuit by parents who are suing to try to get the district provide a facilitator in the classroom. but the school district keeps winning this case, but i'm not sure that's going to keep going. it is so it's just resurging everywhere and it just ticks me

and i'll be done real quick. no. to another thing, which is, you know, i had a friend who was very young who died of cancer and she you know, those last eight mom, it was we're going to try everything. and it was it was very sad to see. and there's always somebody out there ready to make a buck off it. yeah. and, you know, we've heard so much about i mean people swallowing bleach you know and it's scary stuff and i really know where i'm heading but this just feels part and parcel with all the other crazy stuff that we've heard about like what was the it's something chambers hyperbaric oxygen chambers which i did i want to say like i'm not exempting myself. yeah. from all parents we've all been there from all the alternative therapies we through all of that we did auditory integration. we did the hyperbaric oxygen thing, we did the diet, the

vitamins and all of that. it's just for us. at some point we got to the point it was like nothing was helping and kind of for me, it was just a reckoning. now, to be clear, the fc people believe that that what doing the rapid prompting method and spelling communicate are actual are examples of facilitated communication even though everyone outside of those communities including you know the professionals that it is because it depends this facility the help of a facilitator they argue it's a legitimate form ac which is alternative and augmented communication and therefore should be funded in the same way and provided in the same way. so they say it's that crazy alternative stuff that other people are doing. this is, you know, this is real. i'm sorry. yeah, i didn't come. part of what i understand this all comes from some professor at syracuse university. yeah. which is not like. yeah, it's not like trump

university. some up school. i mean he has some status behind and yet. well it's a douglas douglas mclean at syracuse was the one who started it now it's being driven by these two women elizabeth basler at the university of virginia, who started spelling to communicate. and so my i can't even pronounce her last name but like, you know, she's from india and she started the rapid prompting method and a has a place in texas so so yeah but bitcoin did start it and. he he's the one who brought it here in 1989. and i ask a question so i will tell you i like part of it is just an evolution of the for the parents, right? you go through things you start out your child is a certain age and you can't believe that that's going to be the end of it and you just keep on working and you are hopeful and you go and you go and you continue. we have done almost everything you've talked about. we've done. we've been all over the world with our son for different

issues. and i tell you today, if someone said to me, you know, if you do this, it really improve his life, if you did something that would prove his ability to i mean, i probably would still do it. having said he's 27, there are things that i have given up and things that i have let go of and things. so i do think some of is for parents, they have to go through it, right. don't they just have evolve and go through certain amount till they get to a point where they say, okay i've seen i've seen enough i understand who my child is. yeah and so that you if you have a three year old, you're not ready end things. no. and you shouldn't and i agree with you. if someone said, you know, we i you know, i kind of perked up at like kind of the fecal transplant know research that was coming out, like well, maybe this is the thing, but i tell you what, i will always believe in testing you know, that's what that's what boggles my mind. the facility, the communication in particular, is it's very easy to test authorship in any form

of fc you ask the facilitator speller to produce information is unknown to the facilitator. that's it. it doesn't have you can do it in your house you can do it with your your your parents or whoever typically facilitates you. it does not have to be stressful, but the absolute refusal to participate in tests. that's where they lose me. you know yeah maybe you know my next book will be about how jonah in tech mind was access through fecal transplant. i don't know, but i will guarantee you that there will a lot of data to support it. you know, when we did the diet. yeah he jonah gets ect, you know, which was transform into for him that's my first book was about first stopping his super aggressive behaviors how do we know it worked. well we have a ton of data from school, from home to show that he from coming after us multiple a day to never coming after us all. so you just have to there are so many, you know, interventions out there lot of them are, you know, driven by people are

monetizing it. you know, you can't trust anything like testing. you just got to go with data. it's absolutely essential. that's just how scientific method works. and autism community is not exempt from that. and in fact, we need more than anyone else from. you know, the questions that. i am ray and my dad. so i don't to draw the wrong conclusion here. it sounds like you're you may be saying that in texas so profound this don't go together. is it possible that they're just independent of each other and we have profound with intact minds and, profound ones without. well, i will say the definition of is iq below. and to me that's an impaired you know, my son has a test like a 40 and he has no abstract language and. it's not that he he is verbal to some.

he has words that he says, but he doesn't understand any abstract concepts. and me that's that's a significant impairment. so i would say that anyone who the criteria for profound has an impaired mind now are there people who are who have you know a praxis or something that keeps them from talking but they are actually intelligent. yeah, but they are able to communicate other ways independently and demonstrate that intelligence, i think the problem insisting on that in tackiness when all the evidence demonstrates that it's just there as much as we want it to be there. well mary beth. thank you. thank you for this book. i'm looking to reading it. we loved we walk very similar relations ship to places in the jersey shore anyway i, i, i did

what's occurring to me just now is and i agree with everything that you've explained far. so this isn't like a criticism. i am thinking about the concept of, the intact mind and in particular. i'm thinking about catherine morris's book and the way let me hear your voice so foundational to so many of us who used you know, who needed to engage lawyers guns money to get our school districts to provide behavioral services to our children. so those of us who came out of it like aba educational world and fought for those things at often great personal cost, you know, in some ways we're implicated along those same lines, right? it was that it was that cassowary story about kids getting all whether you know their daughters librarians school you know like that's what drove you i think to seek out even science based effective intervention services so we were not delusional you know we were like and we did measure it right. but it just strikes me that it's

a very subtle distinction like sometimes that motivation can be beneficial to even the most profoundly affected individuals. yeah, well, certainly, yeah, exactly. that, you know, in the way you interact with, your kid may be may help, you know, may help that kid the all the constant work that happens like with sous chef is an example when you're constantly with your kid and and and engaging them in a way that maybe you weren't before when. you didn't believe that there was an intact mind in there that might be beneficial in and of itself. i think it's important to note, though. ab the reason why aba is now funded in every state is not just because of the parents like you fought for it, it's because of the data that the providers were able to show that it was effective. so again i don't have i, i, you know, i've tried a lot of things and people parents will still be trying a of things going forward. i just think it's absolutely essential we, we test and collect data and try figure out what things actually work and for whom.

so i mean, never lose the hope, but at least can, you know, do that work or more likely to work. yeah. i want to jump in for a second. having read the book, i want to be clear that the message that you're giving is to families, hey, your kid does not have an intact mind, so give up because there's nothing that can be done. yeah, that's not them. that's not. no, no, no. but that's not the message. and it's hopeful in the and the idea is just to understand that, you know, have somewhat reasonable expectation understand. ng but that that interventions that's the whole point you need interventions that understand problem and that aren't tested in that. so do you find it ironic now there is also a counter movement that's taking the narrative in many forums. you're sort of fighting against the horrible therapist who came and my child cry for 2 hours and you know and don't let them into your house.

i mean, i see it all the time. i mean, i talk about that a little bit in my last book. i one of the other things i didn't on my bingo card besides the resurgence of facilitate communication was the new aba is torture's story mostly because i feel it just reveals a deep misunderstanding of all different techniques that are included in iba division that we can't urgently fracture our power with with just sort of letting these voices take over and then there were sort of infighting and we never it is true that the same people who are believe that is torture, the neurodiversity are the ones who also like embrace fc and embrace and embrace the autism as identity thing. so yeah, i mean, but i, but i, i'm going to push back a little at letting them do this because i've been fighting really hard not to allow that narrative to kind of take over. that's exactly behind everything i write, but it's a much it's

better story, honestly, if you to know why people listen to the neurodiversity activists who say like autism is just an identity and we're all quirky geniuses and this isn't about people with, you know, who to wear helmets and diapers when they're in their 20 years and who was families are kind of stuck at home in a constant state of crisis no one wants that story so it's really hard to get off of them. yeah and really hard to get people to listen. yeah. and for people, me who had children needed more support, more help. it's you have to develop such a thick skin when you're going outside into this community, not everywhere but in many places. oh yeah. because you're sort of he had a he had but he only got so with it, you know like but he might not even gotten this far right. so defending like the negative is not easy. know you can't be like, oh, if you didn't it maybe it doesn't

make sense but well i find that that argument keeps getting thrown up. yeah, i agree with you. where it settles. it's just amazing to me that parents like you who struggled so hard and so much, are now being vilified and attacked it's really heartbreaking to me so. sorry. question here. hello. so i was thinking when it comes to homeless people, oftentimes, you know, we think of them as having severe mental health issues, schizophrenia anyone, you know, in and out of reality, bipolar but i, i don't really often hear about autism and how acutely correlates with homelessness and there has to you i would see that there probably you know a connection between those two you know that's a great question and i don't have any data to support it i will say that my son never

be homeless because even if he was just got out with wandering around, he'd be picked up so quickly because he would like go into a store and start eating something or like he would get something wet on his clothes and start disrobing in the middle of the street or whatever, you know, then you talk about profound autism. the support needs are great that you know, the that i mean, it may not be a great facility that he would be in, but they would definitely put him somewhere like he they wouldn't let him wander around because not only for his safety, safety of other people. and it would be so disruptive to, whatever kind of community he was in, he would never last long out there, but if you're talking about people with more milder presentations of autism, i'm sure that groups into the same people who have mental that that allow them to function to some degree but me and enough to refuse treatment so that they can't be forced into treatment. but i do think that there are a lot of similar issues in both

these communities. i know that a of parents of really severely mentally ill chil children like have severe schizophrenia. other types of psychosis are just so frustrated that they can't they can't help their kids. they're they can't force them into treatment, can't there's nothing for them. there aren't services for them. so a lot of the issues are similar. i mean, you're certainly right in that we are friends with a with a parent of someone from autism who had a type of breakdown and needed to be hospitalized a really what they used to call a mental institution or or a hospital for people with mental illnesses. and the hospital couldn't handle well and this is you know, so it goes to what saying the hospital would like you know after a while you've got to take this individual out because we can't handle. yeah, both populations are faced with decreasing of like acute care facilities driven by the same kind of narrative is

everybody can be cared for in the community you know, so the same romanticization of mental illness and of and of autism. so a lot of the same issues in both these communities. time for one more question. if somebody has one or well, i just sort of want to make a point to your point, which is, when we were working on our in a different key, one of the families i met with a wonderful who you may have heard about ten, 15 years ago, his daughter who was severely autistic, had f.c in class and she, her father of of attacking her and misconduct. and he was put in jail for his actions and and in fact, it was they were the ones who got facilitated communicate into the school to begin with because they thought it was the their child had an intact mind and

after the court battles and he got out jail and life you know, turned back into the way it was before. fc when when i spoke with him, he said, you know, i would do it all again. i would go back to jail, i would live through everything that my family went through for those few months that when i walked down the street with my daughter and when she was on the track team and when she was doing things with other people, the respect she was given, when people believed that she was more than who she is, i would i would do it all over again. so i think so much of it is is also hope to be accepted as part of the community and that people who can't speak for themselves. don't get that and their families, you know, so desperately want that that they're they're willing to go to jail for it and live, you know, that kind of, you know, that

wanting that gift for their child that they think is so important. which is the acceptance. yeah i mean, i totally understand. you know, there's nothing i would want more than to then to believe that there was kind of a typical genius intellect. and joan and i. but like i said, i believe that for, for the first part of his life, i understand that i have no, you know, i have nothing. but the greatest empathy for these parents having been there myself, it's i have a little bit more a little more frustration with the providers, the kind of who are pushing this the the researchers who are kind of generating fake science to support it, you know, like because there are these harms of people by there were more than five dozen cases like that where parents ended in jail, accused of sexual abuse by their kids who facilitated communication. but some of it's not about them, the parents. it's wishing for their child to

get a certain respect. and and that's you know that's the tragedy of fc really i think so you are sure calling my better half and conor allen's mullins amy we just wanted to thank you so much for this and this is a you know a little token of appreciation from the bookstore for everything you do. we really couldn't can't thank you enough. thank you so much for having me. this is great and nice just being among people who get it, you know, i don't think all my events are going to be, you know, have filled with people who kind of know exactly what i'm talking about. we kept people. so let's give a big round of applause to dr.