Parents and professionals alike are noticing a staggering increase in the rate of autism. Jill Escher, autism mom, research advocate, and president of the National Council on Severe Autism, discusses some of her important research ideas in the field. As mothers of young adults with autism, we also discuss the supports available in the US for autistic adults and how it will stand up in the face of the increasing rates.
Jill Escher and the rate of autism
Jill is a mother of two children with nonverbal autism and with no history of autism in her family, she was motivated to understand the causes behind autism, leading to her work today as a research advocate teaming up with scientists to study innovative new ideas on this big ticket question. There are many theories in the autism world about the causes and Jill has done work learning about non-genetic heritable effects. This means taking a look at a genetic change, that isn’t a mutation necessarily. This is caused by environmental/medical effects to the parents that may have affected their sperm or egg before the child was conceived. Uniquely, Jill was able to receive records dating back to her in utero care with her own mother and found that her mother was injected with a steroid in the 60s that could have this effect.
Is genetics the cause of autism?
If it is plausible that genetics are not the cause for all autism, and that it is a combination of environmental impact on the genes, this might explain the rate of increase in autism. There are a lot of charts with varying dates that discuss the increase, but there are not many that focus on the broad timeline of the 1970s to the present, in which we really see the rise. When discussing the increase, many people say that diagnosis has become easier and broader. In some cases this may account for less than half of the increase but in many instances the requirements to be included in data that show the increase have become more narrow, and stricter. Which actually reflects a larger increase than we even know.
So if rates of autism are genuinely increasing, what does that mean for our future? Today’s children with severe autism will eventually become adults with serious support needs. As parents of adults with autism now, Jill and I both agree the current supports in place are not enough. It is not a level playing field state to state either and this is a real concern as the rates of adults with autism continue to grow. While not a definable term, “Severe Autism” describes a portion of ASD that requires 24-7 care for the individual. Many individuals with severe autism are non-verbal or have limited language and pose great safety risks to themselves, they are unable to work in traditional settings or independently, and need a great deal of constant support. As an autism community, we must come together to get our children, who will become adults, more. They deserve more.
Jill and I discuss a lot of nuances in the autism research field and some of the important work to be done. Her advice for parents and professionals to manage stress pairs well with my philosophy of care. Encounters with your children should be positive and revolve around fun and the genuine joy of your child.
Jill Escher on Turn Around Autism
Jill Escher wears many hats in the autism world. She is an autism research advocate and philanthropist. She is president of National Council on Severe Autism and past president of Autism Society San Francisco Bay Area. She’s also a housing provider for adults with autism and developmental disabilities. Finally, she’s the mother of two children with nonverbal autism.
- Why has the rate of autism increased?
- What do scientists believe cause autism?
- Is autism really increasing?
- Can genes mutate after birth?
- What is a non-genetic heritable effect?
- What does severe autism mean?
- Is there enough support for adults with autism?
- Free Autism Workshops for Parents and Professionals
- Is it Low Functioning Autism or High Functioning Autism?
- Autism and IQ Scores| Supporting Children with Intellectual Disabilities
- New Report Details Alarming, Relentless Surge of Autism in California — NCSA
- ASF Weekly Science Podcasts
- Jill Escher
- National Council on Severe Autism
- Exploring the role of nongenetic inheritance in the etiology of human disease
- National Council on Severe Autism on Facebook
#153 Turn Autism Around Podcast Transcript
Transcript for Podcast Episode: 153
Jill Escher: Why Has the Rate of Autism Increased?
Hosted by: Dr. Mary Barbera
Guest: Jill Escher
Mary: You're listening to the Turn Autism Around podcast, episode number one hundred and fifty three. Today I have Jill Asher on the podcast, and Jill wears many hats in the autism world. She is the president of the National Council on Severe Autism and Past President of the Autism Society San Francisco Bay Area. She has two children on the spectrum, and she is also a research advocate and has a lot of knowledge about the numbers of the rise in autism, which we talk about her hypothesis that it might not just be genetics and or environment, but there's a third hypothesis that Jill has been doing research on and presenting with other scientific researchers, presenting some of her theories. We also talk about severe autism and how we really need bigger seat at the table to help our kids who are turning into adults like Lucas and her son, Johnny. So we talk all about these issues. It's quite fascinating and complex and hope you love it as much as I did. Let's get to Jill Escher.
Welcome to the Turn Autism Around podcast for both parents and professionals in the autism world who want to turn things around, be less stressed and lead happier lives. And now your host Autism Mom, Behavior Analyst, and bestselling author Dr. Mary Barbera.
Mary: Thanks so much for joining us, Jill. It's really good to meet you and to have you on the show.
Jill: Thanks, Mary. Happy to be here.
Mary: So we'll start the same way as usual. Describe your fall into the autism world.
Jill Escher's Fall into the Autism World:
Jill: Well, I was a mother of a young boy who had met all of his milestones, and I got pregnant again and had a baby, a big boy named Jonathan. And we noticed very early on that he was very different from our first child. He didn't babble? He was very irritable. Like all the time, he wasn't interested in toys. When he was a little older, he just started spinning things and looking at things that twirled or little cracks in the pavement or corners of the room. He wouldn't really make eye contact. You wouldn't respond to his name. You know, he did some flapping and jumping. And we brought this to the attention of the pediatrician, who at that time had really not seen many autism cases at all. And he felt there was no problem. And that Johnny was a very, very healthy, robust boy who would catch up.
Mary: And how old was he then?
Jill: That was like at 12 and 18 months and then again around two years? But then shortly after two years were like, Doctor, this guy's not babbling. He's not talking, he's not pointing, he's not playing, nothing. And I had gotten wise by that point to the idea of autism. Okay? And I was reluctant to think of it as a possibility, considering I had really never met anybody with autism. I had no autism in my family, my husband's family and there. There was no reason to think that this would happen to a child of ours because I had no risk factors. But we eventually took him to a neurologist. The neurologist basically took one look at him and said, Oh, he has it in spades. We're like, What's really? How's that possible? And then we got a second opinion, a third opinion, the never and said, Yep, this guy has autistic disorder and you should start ABA, but there's really not much you can do about it. And we're like, what? Like, where did this come from? You know, and then a couple of years later? Well, seven years later, to be exact, we had a daughter and everyone said there would be a very, very, very low risk of autism because of Chinese sort of came out of the blue. There was no reason for it. No genetic reason for it. Nothing. And by the way, so he's a girl. So you know, the chances of her having autism are even lower as a female. And lo and behold, by the time she was 18 months, you know, same pattern. She had a little bit of language, but it was only repetitive and no back and forth. Very little babbling, no interest in toys, no interest in abstract context, no interest in stories, you know, repetitive play. And we're like, Oh yeah, here we go again. So then she was diagnosed again with autistic disorder by multiple clinicians. So that's my fall into it.This is not something I ever expected had heard of or sought out. It found me. And today John is 22 and Sophie, 15, and they're both non-verbal autism to this day.
Mary: OK. So and you are an attorney, so didn't have an education background?
Jill's Background and How She Became Involved with Advocacy:
Jill: Yeah, I was an attorney. I'm not no longer practicing, but yeah, I didn't have a scientific background or an education background. And again, you know, in my life growing up, I just never encountered autism. No one I knew had it in their families. No, I never saw it. And when I was growing up, it was not something that was really talked about. And so I really didn't know what I was getting into at first. Now I know.
Mary: Yeah. So we're going to talk more about severe autism and your kids a little bit later. But one of the real reasons I wanted to have you on the show is because I listened to a podcast interview you did recently with the Autism Science Foundation podcast, where you talked about your research, you're first author on scientific papers and curious how you went from an attorney to a scientist. I mean, you know, we'll talk about the autism rates and all that stuff. But like, were you just so intrigued by why your kids had autism that you started doing research?
Jill: Yeah, actually, I want to make it clear I'm not a scientist and I'm not a researcher, but I'm definitely a research advocate, and I definitely work with people who are scientists. But I myself, I don't do science. I advocate for science, I talk about science. I try to promote ideas that should be pursued in science. And I also fund to a modest extent, some pilot studies. But no, I had no, and my husband and I had supported autism research really from the beginning because we're like, What happens here? We had no answers at all. You know, we knew it wasn't genetic. All the clinicians told us that. I mean, you can take one look at them and tell they don't have any genetic mutations. We don't have anything. Our family. My pregnancies were totally normal. You come as a family with zero risk factors and then all of a sudden, not just one, but two kids with autism, not just autism, but severely disabled by autism like that. And this is something a pattern that we see happening over and over and over and over again across the United States. It's not just our family, right? Right. And I'm like, I never could figure this out. Nobody had any answers for us, and I thought, well, this is quite a significant public health question, considering that we see these really exponentially increasing rates of of autism, which, by the way, are real and not just an artifact of diagnostics, but we can talk about that. And then it's a very, very long story. And I'm going to put it into a tiny nutshell. But about nine years ago, through this crazy set of circumstances, I discovered that I myself when I was a little tiny fetus. So in my mommy's tummy, basically, I had been very, very, very heavily exposed to very powerful synthetic steroid drugs. Now these were drugs that in the 1960s, I was born in 1965, gestated in 1965. These were drugs that were pretty common several decades ago, given to women who were thought to be at risk for miscarriage. My mother was thought to be at risk because she had had prior miscarriages, so she went to a doctor who basically injected her week after week after week for eight months straight with these very powerful synthetic steroid hormones. And in my mind when I discovered this because I happened to get my records, which was amazing, most people have no records of what they had been exposed to in utero, but I had detailed records. It, of course, raised my mind. Well, did something happen to my eggs? Right? So I kind of had this instant hypothesis is not not only was I affected as a fetus, but were my eggs which were developing when I was a fetus. Were those somehow exposed to these drugs and did that result in some sort of impact on my child's my children's development? So that remains the core of my hypothesis, which is it's not just the in utero exposure to the fetus that matters, it's also the exposures to the parents gametes that matter. So you have to go back in time even before the child is conceived to the parents, basically sperm and egg, their gametes and the history of their gametes. And that's a weird thing to think about. We don't think about that when we think about what could be causing disability in humans. We do think about prenatal exposures, and we do think about what happens when they're infants and young children and adolescents. We think about all of that, but we fail to think about the parents gametes, we think of those only as DNA. Period. We don't think about all the other things that happen and so that's what I've been supporting for the past eight or nine years. I've been supporting research looking into what are called non genetic heritable effects, which I'm sorry for that mouthful.
What is a "Non Genetic Heritable Effect":
Mary: Non genetic heritable effects. So most people think, OK, it's genetic and or environmental triggers, and you're saying that this is a third, you know, kind of a combo of looking at not just the genetics of the baby or the fetus in your belly, but also your eggs and your husband's sperm and that. What about like mitochondrial disorders and things like that? Like this is our genes are able to kind of. And I mean, I'm just asking these questions because these things have been brought up to me, and I don't really know if these really complicated stuff here. But can Gene's kind of mutate even after birth?
Jill: OK, really good question. Really good question. So I'm going to back up a little bit and just say earlier in October, I published an article in the Journal of Autism and Developmental Disorders, which is the leading autism journal. I published it with five research scientists that lays out this hypothesis, and it's open access. If people want to look up that journal and maybe type in my name, it'll come up.
Mary: And we link to it in the show notes as well.
Jill: Yeah, it can be in the show notes, so here's the thing. Your sperm and egg and it's like, what are you talking about? Like gametes on the autism podcast for? Yeah, but really, it's really important. You know, they're pretty well protected. Most things are not going to cause mutations in your sperm and egg. Most things aren't going to damage the mitochondria in your egg. There aren't mitochondria in the sperm, by the way, you're inherited entirely from the maternal side. Most things aren't going to, you know, cause much of a change in what's called the epigenome. So the epigenome is a little bit like the genome, but it's all these chemical factors that affect how genes work instead of changing the actual genes themselves. OK. Right. So you can turn on or off a gene through epigenetic mechanisms without changing the gene so you don't need a mutation actually to have a mutation like effect. OK. And that's what epigenetics explains in some cases, in most for most things, these things are most things are innocuous and won't damage or harm your sperm, and that there are some exceptions to that. And that's where I've been focusing the research that I support. So one exception to that is general anesthesia, and we see this in animal models where if you administer, let's say, a rat or a mouse or general anesthesia, while as if you're going under for surgery, let's say you're having your gallbladder removed or something, right? So you can mimic that in a rodent. And what they've seen in these studies is that the sperm or egg of the rodents exposed rodents are changed by the general anesthetic exposure. Now that's very uncommon. Right? Like most things, that's not going to happen. But something like general anesthesia is so potent, so toxic that has chemical properties which enable it to reach the germ cells, which is not true in the case of a lot of chemicals. But it's a potent, potent neurotoxin. In fact, it's designed to be a neurotoxin. It's designed to virtually kill you by suppressing your nervous system, right? But it's doing that for a good reason. So it enables surgery. We need surgery, so I've nothing against general anesthesia. It's a very vital pharmaceutical. But at the same time, it's a it's a neurotoxin. It's a reproductive toxin. It does cause DNA damage, and it can cause changes in the epigenome of both brain cells and our our germ cells. So I point this out as an example of a question that I think should be very preeminent in autism research. We tend to think of autism coming from either the genes or the environment. Right? And in this case, it's neither. We're not talking about the genes, we're not changing the genes and we're not talking about the environment as it affects the fetus. We're talking about the environment as it affects the germ cells. So this is a really, really to me, fundamentally important question for autism research. Can the exposures like this? This is not the only ones. This is just an example. But can a parent's history of exposures like this help explain increased risk for autism in their children. That, to me, should be above genetic research right now. We have exhausted genetic research. We've spent billions of dollars looking for autism genes. And even today, genetics can only explain 10 percent of autism clinically. And in that 10 percent, most of those cases are syndromic and things that you might really not think of as autism, like fragile x, a p 10 mutation. You know, I can go on. There's some deletion syndromes, you know, 16 p 11, blah blah. And you know, those explain just a small fraction, and despite study, after study, after study, after study, we're really not finding significantly more genetic findings that can explain the outcomes in the offspring.
Mary: So your argument for the twin studies that have been done that shows that if one identical twin is a factor with autism, the other one has a 90 percent chance or something like that. And then siblings, you have two siblings, and the chances of having another child with autism is upwards of 25-30 percent now.
Jill: No, it's more like, you know, 18, 19, 20 percent. 20 percent.
Mary: Yeah, there has been a couple of studies that have even been higher than that, which is kind of alarming. But your argument would be yeah, but that doesn't mean it's genetics because they came from the same parents and they are living in the same environment. They were exposed to the same, their parents and them, or exposed to the same toxins. So that doesn't really prove that it's genetic. You're saying that the only 10 to 15 percent can actually be proven and linked to a gene like a fragile X gene.
Jill: Right? So what explains that other missing heritable portion of autism? Autism is very strongly heritable. As you just said, 90 percent concordance in identical twins. Right? 20 percent ish in non-identical siblings or heterozygous twins, fraternal twins. So what accounts for that disparity? Well, the field has been saying, well, it must be genetic, right? There must be a shared mutation or something like that. That hasn't been found. And so what I'm saying is you don't need a gene to result in this heritability. You can also have an epigenetic effect which can't be detected in the sequence of DNA, which can also explain this heritability. So let's look at that. You know what? What makes me crazy is that you have families like mine, like two kids with idiopathic autism. Idiopathic means cause unknown, you know, families with three films with four families of five. I met a family with six kids with autism, right? And in none of these cases have researchers expressed any interest in interviewing the parents about their exposure histories. I mean, no one ever said, Gosh, Jill, it's really weird that a family like yours. No, absolutely no history of autism or anything like it. All of a sudden, out of the blue two kids with non-verbal autism. Gee, maybe we should think, did something happen to your eggs? Did something happen to your husband's sperm? No. That thought, which to me seems obvious, seems not to have crossed the minds of a single autism researcher. You know, and so I just actually wrote. A paper was published in Biology of Reproduction. I'm not sure if it's open access, but anyway, about this question really urging researchers to think differently about autism origins and to hammer families to death with questions about their histories. And one of those questions, for example, should be their histories of exposure to anesthesia. And I know and I say that much because every single animal model conducted to date has shown these effects, but because it's a pattern that I have seen among autism families when I have interviewed them. I'm not saying like, Oh, it's like THE red flag. It's nothing like that. I think that there are probably lots of things going on. I'm not at all putting all my eggs in this basket, but it's a pattern that I've seen enough that it has definitely raised an important question in my brain. So, yeah, just a quick, quick example. I seem to notice that when a mother has had, like in her childhood, let's say, a burst appendix. Right? And she had to undergo eight or nine hours of surgery, like in youth or adolescence. As a result of that burst appendix, I have seen what seems to be a higher risk for autism in her offspring. Well, why would that be? Well, maybe it's the anesthesia. Maybe it's the fact there was inflammation. Maybe it's the fact that her abdomen was open for eight or nine hours, and maybe it's a combination of these things we don't really know. But you know, I'm a hypothesis hunter. I can't answer that question. I can't say, Oh yes, it was that exposure that led to higher and higher risk for autism in her children. I can't say that. What I can say is that this is an important hypothesis, among others. And so really, that's what I do. And it kind of makes me crazy when people say, Oh, autism is genetic, they've seen that in like multiple studies. I no, the studies do not show. The studies emphatically show that autism is not genetic, except in the small percentage of cases. But that is highly heritable. So let's look for another source for that heritability. That's not genetic sequence. That's my argument. Frankly, you know, the researchers I work with are very enthusiastic about this, and they think that it's really like, you know, the important path forward. But when you talk to kind of the diehard autism geneticists, it's so off their radar. They aren't thinking about this at all.
Mary: Yeah. And it just never made sense to me if it was truly just genetic without environment or environmental triggers, it just doesn't make sense. Like, how could you have this staggering rise of autism without even a generation going by? So let's talk about the staggering increase which you are like I am saying that there has been a staggering increase in the the diagnosis of autism. And is that, you know, and that's controversial. It seems like everything in the autism world is controversial. But you know, when did that start? When did the increased start? From your perspective, I know you sent me an article about the California system and we can link that in the show notes. But when did the increase start and is it real? Yeah.
The Staggering Increase in Rates of Autism:
Jill: OK, so it's become extremely common in the media, even among autism researchers to say that, you know, these two or three percent rates of autism that we're now seeing in our children is just an artifact of greater awareness, better diagnostics, broadening diagnostics shifts in how we considered ID, intellectual disability now considering it autism. They'll throw in all these factors, right? And they'll say, Well, that explains the increase in autism. It's not a true increase in biological disability, right in our children. OK. I want to say emphatically, that is complete B.S., and it's obvious to anybody who takes the time to look at the data that there has been. And as you said, a staggering increase in autism between like, let's just say, the 1970s to today. And if you look at the California data, which comes from the Department of Developmental Services because the Department of Developmental Services and our state I'm in California serves the more severe side of autism. It tends not to serve. Asperger's tends not to serve high IQ. It tends to focus on those people who really need support for their whole lives. If you look at the DDS data, and in fact, I want to say that in 2003, the criteria for entry into the system became more stringent. It didn't become broader. It became narrow. You had to be more disabled after 2003 to get into the system. So we have had, by definition, the opposite trend. But nevertheless, the numbers have continued to increase in an almost exponential fashion. So how do we know this in the 1980s? There were about, early 1980s, there were about three thousand cases of autism in the entire state of California. Right? How many do you think there are today, Mary?
Mary: Oh, I'm bad with numbers. Let's do. Oh, I don't even want to guess because it's probably like it's so silly, just how many people?
Jill: About a hundred and forty thousand. OK.
Mary: I was going to guess 300000. So I went there.
Jill: Yeah. Well we'll get there soon. At this rate, we'll get to three hundred thousand soon. So what the data shows us is that year after year, there's been about an 11 percent increase in autism births every year. From a caseload perspective, we've gone from three thousand in the early 80s to one hundred forty thousand today. In terms of prevalence, we went from a tiny, tiny fraction of the California population up to where we are now, one point four percent of all kids or twelve point five. I think we're headed there. If you look at our educational data, it's at least about 1.9 - 2 percent of all California children have an educationally defined autism, which is broader than the deeds autism. And then if you look at other countries and even like the recent reports from New Jersey, we're seeing autism rates in the three to five percent range of all children, three to five percent. Now people say, Oh, we're just noticing it better, you know, like, OK, there is actually not a single study out there. And I want to emphasize this, not a single study out there that shows that these numbers are an artifact of expanding diagnostics or shifting diagnostics, not one. And the studies that have looked at those diagnostic effects have found that they only account for a portion of the increase. So in California, for example, some researchers at Mind Institute looked at this phenomenon, and they're like, No, maybe it might explain like 30 percent, but it certainly doesn't explain, you know, this other portion of the increase. Even like studies from Denmark have looked at it and said, Well, you know, we have this increase in autism, but you know, maybe only like 40 percent, maybe half of it can be explained by diagnostic factors, not the other percent. And these are, by the way, I should say usually these studies look within a very compressed time frame. If you look across the broader time frame, it's even more acute, right? The lack of explanation is even more dramatic. It's in my mind, one of the most urgent public health issues facing us today. I mean, it's up there with COVID. In my opinion, it's going to last a lot longer than COVID, maybe more expensive than COVID. It will be more devastating than COVID in terms of the fact that it's affecting children from their birth and not just something, you know, that kills them later in life. And I feel like we'll get there. But right now, we're sort of in this place, this little hole of denial and confusion, and we are suffering, I think, a lot of complacency and apathy where instead we should be feeling a tremendous urgency.
Mary: Yeah, I agree with that. So let's talk, let's switch gears a little bit and talk about severe autism. And so part of what we're saying is, you know, there is an increase in numbers and it's real. And we're not 100 percent sure of the statistics, although we both know that research points to the fact that in the people with autism, kids and adults, we're looking at at least a third of them that have IQ is under under 70. I did do a video blog on intellectual disability and how it co-occurs, especially for kids with severe autism in many situations. My son has intellectual disability too, and that that's really why he needs 24-7 care because he doesn't have the cognitive ability to know when something's dangerous or how to call 9-1-1. I mean, we could physically teach him to call 9-1-1, but he doesn't have the language or the cognitive ability to understand any of that. So you founded you are co-founder of the National Council on Severe Autism, and I've been following that. That started a couple of years ago.
What does "Severe Autism" really mean?
Jill: Yes, we launched in January 2019.
Mary: OK. So it was it was pretty recent. And it's you're the president and you have two kids with severe autism. And so like, you have strong opinions on this increase, especially the increase in terms of not the, you know, people who can read and write and self advocate, but like our kids who need 24-7 care and being lumped together with people like Elon Musk. Like, how can everybody have this diagnosis? And yet? We feel like we have to just keep screaming about the need for more services and better services around the country and the world, so let's talk about severe autism, like what is severe autism, right?
Jill: So severe autism is not a technical term, like it's not defined in the DSM or elsewhere, but it's a term that people have been using for years and years to distinguish those who have cognitive and functional deficits, very significant cognitive and functional deficits, differentiating them from the people for whom autism manifests more as a social and sensory disorder, but who are kind of functionally and cognitively intact. But for us at NCSA, we use the term to basically say, you know, if somebody has very significant cognitive function impairments requires continuous or near continuous supervision. They are often nonverbal or have very limited verbal abilities, or if they have verbal abilities, they're not used in a kind of normal conversational way. They might be scripted or repetitive. They obviously have intellectual impairment, and in a large subset, they have challenging behaviors such as aggression and self-injury, property destruction, loud disruptive vocalization that would interfere with their safety and well-being. So that's kind of a mouthful for our population. They're not at all thinking Elon Musk. I mean, it's absurd to put someone like Elon Musk in the category of someone like my son and your son. That's the height of preposterous lunacy. You know, like, you know, if you were to award like the most absurd medical idea of the century award, like it would go to something like that, but nevertheless, like here we are where people are like, Oh, Elon Musk has some social anxiety. Therefore, he must be like, Oh, like Jonathan Escher. Like, no, no reasonable person would put them in the same category. Like, no reasonable person would put schizophrenia in the same category as like minor depression. Right. No reasonable. There's some overlap in symptoms, there's a tiny, tiny bit of overlap in symptoms, but there are differences so greatly outweigh what little they have in common. You would never put them in the same diagnostic category. But nevertheless, this is exactly the same nonsense that we're seeing in autism today. You know, the fact of the matter is that autism has exploded across all levels. It's exploded from that, from the severe category. It's exploded in the moderate category is exploded in the mild category, and this is all happened in the last 40 years. It really started. You can see in the California data very clearly that the births of this population really began to surge in, like the early to mid 1980s. That's the inflection point. OK, so it's been about 40 years in this autism, but we didn't detect it until the 90s, like they saw a little bit in the in the 80s, and then they began to really see it by the mid 90s. People are flipping out going like, Oh my God, what is happening in my school district? Oh my God, what is happening in the California developmental services system? Why are the numbers surging? Everyone saw it. And now the numbers are many, many, many times what they were in the 90s. So severe autism, all of the autisms have grown, and we have not really diagnostically caught up to where we need to be to really figure out the subgroups that share sufficient characteristics that it's meaningful clinically, it's been very difficult for the field to catch up to that. It still sees autism as this social communication disorder, which in most cases, it's really not. We're talking about something that's much more than a social communication disorder much, much more than that. So NCSA published a position paper about two weeks ago calling for basically the splitting up of the spectrum and having at a minimum categorical recognition for severe autism in the DSM. Now other things too are we don't pretend to speak for the whole spectrum, but clearly somebody like Johnny deserves a diagnosis that has nothing to do with Elon Musk. It does, Johnny no good as a patient right to be equated to somebody who let's say, went to Harvard and is a lawyer and is and can work full time and get married and have kids. What's the clinical benefit? The purpose of the DSM is to provide clinical benefits. It's not there to be a political treatise.
Mary: Right. And and the DSM is the diagnostic manual for....
Jill: The American Psychiatric Association. Yeah. Oh, and they published the Diagnostic and Statistical Manual, it's in the fifth edition now.
Mary: Right and really, what happened I think...because when Lucas was diagnosed, it was the DSM four version and that had autistic disorder, meaning severe. It also had Asperger's and PDDNOS and Red Syndrome and CDD and Childhood Descent rated Disorder. And when we went from DSM four into, I think it was 2013 to DSM five, that's when they got rid of Asperger's Everett, a PD d.a.'s, which was mild and in higher functioning levels and collapsed everything into autism spectrum disorder level one, two and three. And I think I did a video blog on that we can link to in the show notes. If you're new to this topic because we're kind of we're touching on a lot of stuff here. You know, first the genetics and now the increase and now be all these diagnostic categories. But I think when it changed the DSM five, I mean, and that at the same time in 2013, you know, Twitter, Facebook, everything was going nuts for starting. I'm not sure you know exactly what year all that took off, but I think the people who are conversational and can self advocate, you know, they started advocating for themselves as they should. But then again, that's what the media portrays. That's what the politicians want to go with. You know, the whole neurodiversity movement is actually, you know, saying that our kids, you know, maybe don't need the care that they need or we shouldn't have places for them to go into pre vocational programs or otherwise known as sheltered workshops. Or we shouldn't have residential placements.
Jill: You know, I think, you know, honestly, I think there's been an all out assault on the severe autism community. And I say that reluctantly because I don't want to say that, I don't want to create division. But it has been like an all out political assault on the severe autism community by disability rights advocates that have a very rosy view of what autism is. And there's a real pervasive denialism about the level of disability and what their life span needs will be. And one example you just mentioned was sheltered workshops. This is just this is not the only example, but the disability rights crusaders have very successfully been limiting access to noncompetitive employment for people with severe disabilities. The idea is that people with disabilities shouldn't be paid less than people without disabilities. OK, well, all right. I'm all for somebody getting a competitive integrated job, if they can. I'm all for supports for that person. But the fact of the matter is anybody with two eyes can see that, that is not possible for probably the majority of people with autism. I mean, the data really shows that people with autism have incredibly low rates of employment.
Mary: Even my people with normal IQ range.
Jill: Even people...Yes, exactly.
Mary: Like what the employment rate, at least the statistics that we're aware of are only like 10 percent of of people that have been diagnosed as autism spectrum disorder are actually competitively employed and happy with that employment, like, you know.
Jill: Yeah. And a lot of those people don't even work full time, by the way. So, yeah, it's really miniscule with horrifically bad employment rates. And so, you know, the people who are sort of the starry eyed, you know, ideologues are like, Well, we just need to find more employment opportunities for these people. We need more acceptance and understanding. And I'm like, No, that's not actually going to get you very far with the vast majority of the population is the vast majority population inherently lacks the ability to do this work right. They lack the cognitive ability. They lack the functional ability. They have behaviors they need supports, you know, it's like it's not possible, right? Somebody who is like throwing a tantrum and like kicking down the machinery at work is not going to be invited back.
Mary: Right, right, right. So, you know, or even like Lucas to even volunteer somewhere, he needs a one to one support highly trained support person with him, and then he can do very well. But if he actually got a part time job, then this highly trained person could actually not accompany him, even short term or long term, because that's a different funding source. And then we'd have to bring in this type of worker or that type of worker, it's like forget it.
Jill: Oh it's crazy. It's insane, it's an insane idea, but is this insane idea has captured the imaginations of the policy makers and the disability rights leaders who I think just don't want to grapple with reality because the reality is really hard and very expensive.
Mary: And as the rate goes up. There's going to be a lot more adults like Lucas and Jonny coming down the pike. I mean, I've heard it be termed a tsunami is coming.
Jill: There's no question. All you have to take one look at the data. It's already a tsunami, right? Already, the adult services are completely overwhelmed by this population. And now with COVID, it's like, Oh, it got even worse. Of course.
Are There Enough Supports for Adults with Autism? What Does the Future Look Like?
Mary: Yeah, yeah. So what can we do to move forward in some small steps to make this better for our kids coming down the pike and that are going to be adults with severe autism? Like what can we do?
Jill: I think everything has to start with truth. You know, we have to be as honest as possible, you know, just kind of glossing over a painting over reality as we see all the time, you know, happening in the media, happening in the neurodiversity community doesn't help our population at all. All it does is further marginalize them and make them more invisible and make their needs less urgent. I, for one, am entirely about honesty and truth and facts, and we have to get those facts out there as clearly as we can. I think that the data on the increase in autism is has been really kind of swept under the rug. We need to have more reports showing not just as you mentioned, like not just the diagnosis of autism, but what that actually means in terms of functional levels. We need to be able to project that, and you would think that by now, twenty twenty one, that this work would have been done. But in fact, very little work has been done on this. And the little work that has been done is extremely alarming in terms of what it projects in terms of costs, not just to families and taxpayers, but to the society at large. It's just enormous cost burden. So we need to be very realistic about it and then we need realistic policy. I mean, I usually talk about it this way. We have insurance, right? For a lot of things like I'm sitting in my own home, I have home. If my house burns down, I have home insurance, I'll be able to rebuild, right? If I cross the street out there and get hit by a car. I have health insurance, so if I get my car, I can go to the hospital and they can do it, whatever to save me, right? We don't have autism insurance. I mean, we have autism. People think of autism insurance in terms of access to ABA, and that's fine. That's just one kind of small thing. But we don't have a national system for thinking about how do we spread the risk for the lifelong care for adults with developmental disabilities, especially autism, which is, I'm sorry, the most severe of all of the developmental disabilities. We don't think that way because we haven't had this problem in the past. Right. This is a new problem. This is an unprecedented problem, an unprecedented population. And we aren't really thinking realistically about how we're going to do that instead. We're sort of, you know, we're utilizing old systems like Medicaid, which was never really developed to address the needs of a population like this at this level, at these numbers. And we're just sort of trying to use these old systems in a patchwork way. It's a very fragmented, disconnected, illogical way to provide services.
Mary: Every state is totally different.
Jill: Every state is different. And I think, like the IDEA for education, it was a level playing field across all 50 states. This is the rule about how you deal with kids in need of special education. Right? Period. Across 50 states. Level playing field. We don't have that for adults. We don't have that legislation that says this is the level playing field. This is the baseline in terms of how we provide long term care for this growing population of adults with serious neurodevelopmental pathology. So how do we get there? You know, that's the million dollar question. You know, it starts with awareness, there's all this like awareness and acceptance, awareness and acceptance, but the most important thing we need to be aware of is the reality of the growing numbers and the intensity of their needs so that we can make change in politics. We're not there yet, we're not really close to it yet. We have this kind of tattered Medicaid system that people are scrambling for dollars or they're waitlists for 10, 20, 30 years to get services. And then when you get services, they're funded at such a low rate, you can't even find staff to provide the services. I mean, it's just broken. So I hope that, you know, we can get to the place someday where we can make change at the federal level. Everybody talks about change at the state level, but I think that that's going to be a very hard fight because there is something that economists call the race to the bottom. No state in the in its right mind wants to be a good provider of adult autism services because no state wants to attract any autism case to their borders. Not one. You look at some of these cases and they cost like, I kid you not per year on the low end one hundred thousand dollars a year on the higher end, a million dollars a year. Very common to see severe autism cases costing two hundred three hundred four hundred thousand dollars a year. And that includes all the housing, the programs, the staff, the medical care, all that. It's an insane amount of money. So you have these states are like, OK, yeah, we see this autism problem, but we don't want to really deal with the autism problem because we don't want that reputation. We don't want a reputation as a leader in the field. So you have this inherent disincentive to provide adult autism services. The only solution, in my view, is to have federal legislation to really address those people who really can't care for themselves, who really can't work. I mean, I'm all for competitive employment. I'm all for community integration where it can be done. But for those people who really are completely dependent and require what Medicaid calls an institutional level of care like, my kids require a nurse and requires an institutional level of care, we need realistic solutions. And we're just not there yet. You know, the political will isn't there. The understanding isn't there. I mean, we need to get there. I don't I don't see any other way. I've advocated for other changes as well. I think we need a change in how we see the nonprofit sector. And we need to really empower the nonprofit sector like on steroids, like we need to supercharge that sector to be able to provide services for our children. So how do we do that? I've actually proposed certain I or I set out a proposal for certain changes to our tax code so that we have nonprofits called essential care nonprofits. And those essential care nonprofits are specifically devoted to providing care for those who can't care for themselves and who are indigent. So we need to reconceptualize who the forces are on the ground, we need to reconceptualize where the funding comes from a federal level.
Mary: Seems like a big job, Jill.
Jill: I know and it will take all of us to do it. It will take every autism family. We're a growing community. There are. Now, millions of us in the US, these families were affected one way or another. We do have to become an army. And we can't get derailed into ridiculous nonsense and distant distractions. We have to be serious about a very serious topic. I'm all for acceptance. I'm all for seeing our children in the most positive, possible light. We also have to be very realistic at the same time.
How to Find More From Jill Escher?
Mary: Yeah. So how can people follow your work? How do they join the National Council on Severe Autism first?
Jill: Yeah. If you go to NCSautism.org, the homepage to the top of the homepage has a sign up form. Just put in your name and your email and click Send and you're signed up for our newsletter. We aren't really a membership organization. We don't ask people to pay for things. One thing I hate is asking autism parents to pay for anything because I know, I know that financially, most of them are already suffering enough, so we don't charge anything. We also have a Facebook group. We're also very, very active Facebook page. Just type in National Council on severe autism. It should pop up. We're not active on Twitter. We have an account, but we're very few people in our world who really spend time on Twitter. We're starting an Instagram account. We're a little bit behind the times in terms of social media. We send out newsletters almost every month and we have lots of webinars and we have other online events like, for example, we are starting an online severe autism film series. So that's sort of fun where you can sort of watch documentary films with your online on Zoom, with your fellow autism families and meet with the directors afterwards for Q&A, which should be super cool. So we do a lot of interesting things and it's all there on our website, so I hope people will check it out.
Mary: And you also have a personal website too, right?
Jill: Well, yeah, yeah. If you go to JillEscher.Com, it will pop up and it just sort of summarizes my work and advocacy and in research.
Mary: Cool. And so before I let you go, it's been fascinating discussion. Part of my podcast goals are not just just to help our kids, but also for the parents and professionals listening to be less stressed and lead happier lives. So you with two children with severe autism and you know this nonprofit and your research and advocacy endeavors? What do you do? Self-care wise, stress management wise, that helps you?
Fun - The Unconventional Therapy for Parents and Children:
Jill: I think I'll talk. I'll talk with respect to my daughter because my daughter's the easier of my two children, my son. I will say he did have to move out of the house. Unfortunately, it became an untenable situation and a long story there. So we unfortunately to move him out, with my daughter. I've kind of adopted a mindset of just have a lot of fun and that sounds kind of stupid. But I put her through all kinds of therapy and it didn't help. OK. It just didn't the therapies had very minimal results. She's had more results from doing things that she loves and being pushed. I mean, I'm not saying like, I don't give her that gentle push and try to build skills. I obviously do. Every parent does, but I really focus on what's fun for her. And I think that that has reduced the stress in her life and the stress in my life as well. And I think it probably sounds obvious to most parents of older children. That's probably not as obvious to parents of younger children who really think of therapy has to be a chore, you know, and skill building has to be a chore, and it's something like going to the dentist.
Mary: Yeah, yeah. My kind of approach is all very positive, and we want to use the child's motivation. And so I love that you really focus on fun and and I've even advocated for like counting, taking data on smiles and laughing to build, you know, especially for kids who can't really tell you, like, I'd rather do that. I'm bored with this. And, you know, really notice what really lights your child up. And I think that's perfect.
Jill: Yeah, yeah, for sure. And Sophie, I can say, definitely recognizes when she achieves a new skill and you can see the pride in her face and she loves it. She actually likes learning, but she learns in a very different way and said, I've just come around to really respect that, and I hope that helps even people with younger kids who feel like, Oh my God, if I don't have 40 hours a week of ABA, my child has no hope for the future, I want them to get rid of that stress they put on themselves because that might not be best for them or for their kid. But you don't know you have to. Every parent knows it's trial and error. It's getting to know your kid and seeing what works, what doesn't work. It's not like you figure things out overnight. No one does.
Mary: No, absolutely not. Well, thank you for being such a strong advocate for all of our kids, so thank you!
Mary: If you're a parent, you're trying to talk to the professional. You have to check out my online course and community where we take all of this material and we apply it. You'll learn life changing strategies to get your child or clients to reach their fullest potential. Join me for a free online workshop at MaryBarbera.com/workshop, where you can learn how to avoid common mistakes. You can see videos of me working with kids with and without autism. And you can learn more about joining my online course and community at a very special discount. Once again, go to MaryBarbera.com/workshop for all the details, I hope to see you there.
Sign up to receive email updates
Enter your name and email address below and I'll send you periodic updates about the podcast.