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“Legislative advocacy has become difficult for the severe autism population since the DSM-5 lumped Asperger’s syndrome with autism spectrum disorders (ASD). Further complicating the matter, a new population recently emerged who identify as “autistic” without having a diagnosis from a qualified health care professional.
Without a clear distinction for various parts of the spectrum, we are comparing apples and oranges. We will not render meaningful information, and we make it difficult for the entire spectrum, but especially for those most affected.”
Irene Tanzman is a patient advocate and author of Abie and Arlene’s Autism War. Jill Escher is president, National Council on Severe Autism (NCSA).
They share their stories and discuss the KevinMD article, “Why health care professionals must call for splitting the autism spectrum.”
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Hosted by Kevin Pho, MD, The Podcast by KevinMD shares the stories of the many who intersect with our health care system but are rarely heard from.
Transcript
Kevin Pho: Hi, and welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. On today’s show, we have Irene Tanzman and Jill Escher. Irene is a patient advocate, and she’s the author of the book Abie and Arlene’s Autism War, and Jill is the president of the National Council on Severe Autism. Irene wrote the article “Why health care professionals must call for splitting the autism spectrum.” Irene and Jill, welcome to the show. So we’ll get into that article in a little bit, but I’m going to ask each of you your story and journey to where you are today. Irene, why don’t you go first?
Irene Tanzman: Well, when I was working, I did work in the health care sector as a data analyst, but I am now retired, and I write and advocate full time. But my main thing that brings me to this point is that I’m the mother of two adult children, and one of them has severe autism. And so I come to you, and I came to this article, as the mom of an adult with severe autism.
Kevin Pho: Irene, speaking from your perspective, what would you say right now are some of the biggest challenges facing those diagnosed with severe autism?
Irene Tanzman: Well, as I said in my article, when my son was diagnosed almost three decades ago, fewer people understood the word autism. There were fewer people who were aware of that word. Now more people are familiar with the word, but they don’t necessarily think about the kind of autism that my son has. I wasn’t happy when he got his diagnosis, but it did give me a one-word description of the symptoms that he had.
Nowadays, it’s total confusion, because there are people with that diagnosis who have the symptoms that he has, one of which is very severe communication difficulties. And there are also people with that diagnosis who are actually talented with communication, so that they can write books, and they can have YouTube channels, and they can have six-figure salary jobs. It doesn’t seem like it’s the same disability.
And I attended a webinar from the National Council on Severe Autism, and when Jill Escher called for the splitting of the autism spectrum, I said, “Yes, that’s it. That’s what we need,” because the diagnosis right now doesn’t really mean anything. It’s just total, total chaos. And I wonder how we can really do anything. How can we look at the disparities between people who have autism and those who don’t when the population is so ill-defined?
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Kevin Pho: So we’ll get into that article in a little bit, but first off, Jill, I want to introduce you. You are president of the National Council on Severe Autism. Can you briefly share your story and a little bit about your organization?
Jill Escher: Sure. I’m the mother of two kids with nonverbal forms of autism. My son, Johnny, is 22, and my daughter, Sophie, is about to turn 15. And just as Irene said, I’ve grown very, very frustrated with the meaninglessness, the absurdity of the term autism, which now encompasses so many different realities, so many different presentations, that it really has almost no clinical application anymore.
It can apply to a kid like my son, who is completely nonverbal, who has the academic skills of a preschooler, if that, who has almost no functional skills, and who engages in perpetually disruptive and difficult behaviors. And then it can apply to somebody who’s a college professor, right? Who has trouble making friends, or who has social anxiety, and who has sensory processing disorder. It’s absurd. It’s absurd.
I mean, would any doctor say, “Yeah, OK, we’re going to apply the same labeling scheme to somebody who has a mole and somebody who has stage 4 cancer”? You would say, “No, that would never ever happen in the medical profession,” but that’s exactly what’s happening in autism now. So there is a desperate need to carve out more meaningful categories where there are common denominators, right, in each category. And we aren’t there yet. I do think that over the next several years, we’ll see progress in that direction.
Kevin Pho: All right, so let’s go more into that issue and the article, Irene. It’s titled “Why health care professionals must call for splitting the autism spectrum,” and both of you have talked briefly about that. But Irene, can you go more into your article and explain how autism is currently defined, and share a little bit about what you would like to see done?
Irene Tanzman: Years ago, there was always a spectrum of disorders that fell into this. But things got a lot worse after the American Psychiatric Association lumped the Asperger’s diagnosis together with the rest of the autism spectrum. Things have gotten progressively worse. And one of the reasons why, as I said before, is that the population is very ill-defined.
If you have a child who has problems, and you go to look at the disparities in health care, you have a person who might be very, very difficult for a physician to treat, because when they go into the physician’s office, the physician is going to ask, “Well, where is the pain coming from?” That is totally different from somebody who can communicate well. And you have to figure out how you’re going to accommodate people like that.
I was involved with some of the efforts to bring better health care to people with autism, and a lot of the efforts that are out there are pretty much like sensitivity training, and I don’t really think that that’s enough. I think that we need to really think about: What are we talking about? And what is needed? I think many of the health care professionals who worked with my son were very sympathetic. But they have to know exactly what to do. We need training on it, but we can’t make any progress in anything, because we don’t know what it is.
So that’s what the whole article was about. It was really about one of the things we need to do. As for the idea of lumping Asperger’s in with ASD, at the time, I didn’t think it was such a big deal. If I could go back in time, I would have fought against it, because things have gotten progressively worse. We have people who feel that autism is an identity. My son doesn’t have autism as an identity. He has a severe disability, and we need help. We need services. We need organizations like the National Council on Severe Autism to represent us.
So my article was really a call to action. I think we need help from the health care community. We need to ask the APA to split it up so that the symptoms mean something. The whole idea is that the mental health community has the Diagnostic and Statistical Manual, the DSM. And that manual takes various symptom complexes and gives them a name, so that you can treat that particular condition, or you can do research on that particular condition, or you can do population health on that particular condition. But with autism, we’re not really defining the symptoms specifically enough.
And if you have something like that, you might as well call the whole DSM one condition. You don’t need the distinctions, because what the DSM does is define conditions by saying these symptoms are this particular condition, and this symptom, this symptom, and this symptom are that particular condition. And with autism, it’s sort of like, I don’t know what it is. I know what I’ve experienced, but I don’t know what it is. When I see it on television and in the media, I’m going, “Well, this is nothing like what I’ve experienced.”
Kevin Pho: And Jill, can you share some examples and stories of the issues that are brought up when the autism spectrum isn’t clearly defined or split the way that you would like to see it?
Jill Escher: First of all, I think one of the things that’s really, really important, that is kind of occupying the autism community and the research community as well, is the growing prevalence of autism. And I think Irene was talking about how you need to be able to compare apples to apples in order to appreciate what’s happening in a population with respect to a certain condition. It’s been very hard for people to understand this increase in prevalence, because they tend to brush it off just as an increase in awareness, or broadening diagnostics, or shifting diagnostic labels.
But in reality, what we are seeing is this incredible explosion in serious neurodevelopmental disabilities in our youth, manifesting in early childhood. We see more and more autism even comparing apples to apples. You see this in the California data, where they do compare apples to apples: We’ve seen a 40-fold increase in this condition over the past 30 years. Why is this happening? That is, I think, the million-dollar question, right, the million-dollar question that we’re really struggling to solve. We don’t know why it’s happening, but the question has been muddied and somewhat swept under the rug because of all of this kind of wobbly, “Maybe we can explain it away because of diagnostic factors.” That’s not true.
The other thing is, just as Irene was saying, we do need to be able to treat, right, these patients. And just as you wouldn’t treat a patient with a mole the same way you would treat a patient with stage 4 cancer, you don’t treat a patient with my kids’ type of autism the same way you treat somebody who is a college professor. We really do need to carve out meaningful categories where there are such commonalities that it makes sense, not just diagnostically, but in terms of how we treat them and how we research them.
Kevin Pho: And Jill, as I said before, you are the president of the National Council on Severe Autism. So tell me some of the pushback that you’re getting when making this proposal.
Jill Escher: OK, so imagine that the people with the moles said that they were speaking for the people with stage 4 skin cancer, right? Imagine that scenario. They’re like, “Well, I think my mole is not a pathology. I think my mole is just a difference, a natural difference that occurs naturally, and it doesn’t require any intervention. It doesn’t have to be cured, it doesn’t have to be treated, and we should celebrate my mole. And we should also do that with all these other people with stage 4 skin cancer too, because we all have the same diagnosis.” Imagine that scenario. It would be completely absurd.
But this is what’s happening with autism, right? The people with what I would consider to be akin to the stage 4 skin cancer, like my kids, like Irene’s son, the people with more severe forms of autism, the people who can’t self-advocate, the people who are minimally verbal or nonverbal, the people with disruptive behaviors, the people who can’t care for themselves, who can’t hold a job: They need their own space. They need their own diagnostic space. They need their own urgent needs addressed urgently, right, instead of being constantly involved in this infighting with the people with the moles.
I mean, that’s really all we’re asking. And it should be very common sense, very straightforward. But it’s taking a while. It’s hard to disentangle. Everybody with autism is so different. Carving out is not as easy as you would think, but I think it can be done.
Kevin Pho: We’re talking to Irene Tanzman and Jill Escher. Irene is a patient advocate. Jill is the president of the National Council on Severe Autism. Irene wrote the article “Why health care professionals must call for splitting the autism spectrum.” Now, I’m going to ask each of you for a quick take-home message to my clinician audience. Irene, I’m going to start with you. What’s your take-home message?
Irene Tanzman: I would say, urge your patients. If you have a patient with severe autism, urge the family to join the National Council on Severe Autism. And please, ask the American Psychiatric Association to split the diagnostic categories of autism spectrum disorder.
Kevin Pho: And Jill, what is your take-home message for the KevinMD audience?
Jill Escher: Well, as I said, autism diagnoses are increasing at a phenomenal rate. We are now seeing close to, well, more than 2 percent, close to 3 percent of all children being diagnosed with autism in the U.S. We’re seeing even higher rates in New Jersey. Some districts, school districts, are seeing 7 to 9 percent of all children being diagnosed with autism, which is absolutely a national catastrophe. And I think we need more physicians to take this growing crisis seriously, and also to engage in more training to learn how to treat these often challenging patients.
Kevin Pho: Irene and Jill, thank you so much for sharing your time and insight, and thanks again for being on the show.
Irene Tanzman: Thank you.
Jill Escher: Thank you.
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