#035: Autism Diagnosis, Waiting Lists & Early Language Development with Dr. James Coplan
Dr. Coplan is retired now, but he worked as a developmental pediatrician for decades. He’s got a lot of experience and a lot of wisdom to share with you. Not only was he a developmental pediatrician, but he is the author of a book called Making Sense of Autistic Spectrum Disorders: Create the Brightest Future for Your Child with the Best Treatment Options.
I asked Dr. Coplan some hard questions, and he always had an answer for me. He told about the sister that prompted him to take interest in autism and developmental issues; he explained his Early Language Milestone Scale; and when I asked him every anxious parent’s question, why are the waitlists to be diagnosed so long, he explained in a way that made perfect sense.
Dr. Coplan is somebody who understands compassionate care, and understands that not every child gets their perfect diagnosis after just one visit. He also understands the importance of family; when he was still a practicing pediatrician, he had a steadfast rule that both parents had to be present for clinic visits.
On that note, Dr. Coplan also addressed the topic of denial. Unlike some professionals who believe that denial is a negative trait, Dr. Coplan broke down why some people are so deep in denial, and why it isn’t something that needs to be beat out of them. If you’re someone who is struggling with denial, then this is the interview for you.
Mentioned in this episode:
— marybarbera.com/workshop (Sign up for a free online workshop for parents and professionals)
— Making Sense of Autistic Spectrum Disorders: Create the Brightest Future for Your Child with the Best Treatment Options, by James Coplan
— Early Language Milestone Scale
— Lack of Pointing: A Sign of Autism?
— Autism Denial: Taking Action
— On an Autism Waitlist? Here’s What You Can Do
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Mary: Welcome to another episode of the Turn Autism Around podcast. This is episode number 35 and in today’s episode, I interview Dr. James Coplan, who diagnosed Lucas back in 1999. But before I get there, I want to give a listener shout out to MomMatt16, who left a five-star rating and review on iTunes. She said, “I’m so glad I found Dr. Mary Barbera’s podcast. As a mother of twin six-year-olds on the spectrum, this has been God sent as I’ve learned so much from her. She’s extremely detailed with her information and breaks it down so that you are able to understand how to better help your children and be a stronger advocate for them. I’m so grateful to her for sharing her journey and knowledge with us.” And thank you so much for leaving me that review. If you are listening and haven’t gone over to iTunes or wherever you’re listening to this and given me a rating and review for the podcast, I would love it if you would do that.
Mary: So, let’s get on with our interview with Dr. Coplan. Before we do that, I want to introduce him a little bit more formally, but of course, he has a lengthy bio that I’m not going to read, but I just want to tell you that Dr. Coplan is a developmental pediatrician. He’s retired from practice at this time, but he has been a developmental pediatrician for many decades, and he wrote a book called: Making Sense of Autistic Spectrum Disorders: Create the Brightest Future for Your Child with the Best Treatment Options. And he also developed an Early Language Milestone Scale that we’re gonna discuss a little bit. He is full of wisdom from his many years as a developmental pediatrician. So, I definitely wanted to have him on, and I hope you enjoy this interview with Dr. James Coplan.
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: Okay. I am so happy to have you on this podcast, Dr. Coplan. So, thank you so much for taking the time out to join us.
Dr. Coplan: I’m delighted to be here to hear from you. It was wonderful to get your email and to be here with you today.
Mary: So, let’s talk about your fall into the autism world. I know you’ve been a developmental pediatrician for many years, but I also know, and you told me at the visit when you diagnosed Lucas in 1990, that you have a sibling with intellectual disability. So, can you tell us about your fall and how you got interested in treating kids with autism and other developmental issues?
Dr. Coplan: Sure. It was actually… My earliest recollection, my great grandfather, who at that point was blind. So, the old Russian gentleman blind, and he’s holding my kid sister on his knee and he’s bouncing her up and down. And she was about two and I’m five years older than she is, so I was seven. And I remember standing in my parents’ kitchen and he’s saying to my father and stepmother in his accent in English, “why doesn’t she talk? Why doesn’t she talk?” And that memory was actually tucked away in my brain. And I didn’t have conscious access to that memory for another 25 or 30 years. I went off through high school, through college, through medical school, through residency, I decided to become a pediatrician within pediatrics. I decided to go into developmental pediatrics and work with kids with special needs. I developed the Early Language Milestone Scale to screen language from birth to three that had been published.
Dr. Coplan: And then I was giving an interview to a woman who was a newspaper reporter for the Syracuse daily paper, it was kind of a human-interest story. And she’s asking me all these questions and I’m at home. My wife is in the kitchen making dinner and I have my feet up on the footstool and she’s asking me, where did you go to school? How did you come interested in language? And boom, all of a sudden that memory came flashing back to me. That had not crossed my conscious mind since the day it was laid down when I was seven years old. So, it must’ve been 28 years or more. And so, all of a sudden flash. That’s why I had gone into pediatrics. That’s why I had gone into child development. That’s why I had gone into early language developments. It was all about my sister.
Dr. Coplan: And in fact, as a kid growing up, I very much wanted to help my sister, but for reasons having to do with our family, I was… My sister and I were kept apart for reasons that had to do with family dysfunction. So, I had this tremendous frustration about all of that. So, I was in child development and then initially I was more of a utility player. I’ve worked with kids with cerebral palsy, I worked in the neonatal ICU follow-up clinic. I actually worked in the HIV clinic looking at kids with encephalopathy. I wrote several papers on hearing impairment and one of those was very instrumental, partly in the move to get the universal newborn hearing screening. I can’t share that, but I was told that my paper was handed around the table at the NIH study sessions or recommendation sessions.
Dr. Coplan: But I got into working with kids with spectrum disorder, partly because a lot of times the initial presentation is the way it speeds your language. And one of the questions I used to always drill into my trainees, is it delayed speech or is it delayed language? And of course, with kids on the spectrum, it’s not just speech. The child may be verbal. In fact, some kids will slip through the net because they’re echolalic and they’re repeating phrases, but they’re not using language in a socially appropriate way, not in a reciprocal way, or they’re not using gestures and beckoning and pointing and joint attention. When I point do you look, I look where you look when you point, things like that. So, my interest in language eventually brought me all the way back to working with kids with spectrum disorder. And then that kind of intersected with the tremendous increase in the recognition of kids with milder forms of spectrum disorder. And from there on, one thing just led to another. And when I decided to open my own private practice and stepped away from Children’s Hospital of Philadelphia, and opened a private practice essentially on, with rare exception, was populated almost entirely by kids on the autism spectrum.
Mary: Okay. So the Early Language Milestone Scale, you had told me before we started recording, was published in 1980 and is still available at pro ad and we’ll link that in the show notes, but you were explaining how which I think is really good. This, this scale was, was basically to see if the child had just a speech delay. One part of a speech impairment or a more global language issue like kids on the spectrum have. And it’s a screening tool for kids up to the age of three. Can you describe just briefly the three types of skills that Early Language Milestone Scale is looking at?
Dr. Coplan: Sure. So, the scale, and I don’t have a copy in front of me, but it’s an eight and a half by 11 piece of paper that’s divided horizontally into three areas. The first area has to do with auditory expressive language skills. And those start with things like cooing, babbling, making single syllables, making multiple syllables, and jargoning, which is [inaudible], rising or falling syllables of the like speech and then Mama or Dada, whether specific or not. And then moving on to single words, two-word phrases, and then what I call cookie monster speech: Me want cookie. Kind of three to five-word phrases with broken English, leaving out the verb to be in conjunctions. And that takes you from birth to about 36 months in the expressive area for auditory receptive, which is the middle area of the page, the middle horizontal bar. It starts with things like alerting to sound, turning to sound, turning to a bell or something else like that.
Dr. Coplan: And then following parents’ commands initially with a gesture on the part of the parent, like give me with the parents standout, and then give me without the parents hand, out like that. And then following two step commands and then more complex commands. So again, that takes us from birth through about five. The auditory receptive irritates us from things like turning to sound all the way up to following two to three step commands. Now the third area, and I’m particularly pleased with this that I included is visual communications skills and those are not often present on a language screening tool because most language tools are inherited from speech language pathologists who are about speech and receptive language.
Dr. Coplan: But visual is just as important, so it starts with things like eye contact and then it moves on to things like playing gesture games like patty-cake, peekaboo. It’s so big, which should come in around seven to nine months old imitating gestures. As I said earlier, if you give a visual cue along with a verbal command, give it to me with your handout, that’s at a nine-month level. Give it to me without your handout is it a 12-month level? And then it gets to things like pointing. And it turns out that the age at which children use index finger pointing to point to a desired object is virtually identical to the age at which children will use single words to name the object that they want. This is based upon histories taken from parents where our research assistants would ask, does your child do this? Does your child do that? Then we looked at how the data lined up, and index finger pointed lined up virtually identically to within a couple of weeks of use of a first single word. So delayed pointing is one of those indices of language development. Even a child may have quote normal unquote length of utterance if they’re echoing phrases.
Mary: Yeah. And I think because I’ve been trained in the stat, which is a screening tool for autism in two-year olds and the eight dos and the MCHAT and things like that. Like, I do a fair amount of looking at pointing and talking about pointing and the, you know, that is one of the big, big red flags for autism is lack of pointing, which in typical kids comes in fast and furious very early on. And with kids with autism, it’s almost always delayed.
Mary: Okay, so, so like I said, we’re going to link that in the show notes. And I think that’s a good example where you’ve been, we’ve been working at this for many, many years. As I said in the introduction you are retired now from practice from the actually seeing kids, but you’ve spent many, many decades actually seeing clients as developmental pediatrician, seeing patients. And I know the waitlist… if parents are worried the pediatrician try to refer to developmental pediatricians, the waitlists are very long in the United States. And there’s other doctors and psychologists, psychologists, psychiatrists, neurologists, developmental pediatricians, they can diagnose autism. So why do you think there are such waitlists, do you have any ideas for if a parent is worried or a professional wants to try to find a way to get a child evaluated it can be quicker?
Dr. Coplan: So, you’ve asked a lot of questions that are all rolled together and… Why there are waitlists. I mean it’s supply and demand in terms of having the number of hands on deck to handle the volume. There are also financial issues. And let me broaden this discussion a little bit. When I was on the faculty and or on the staff of either a university hospital in Syracuse or the Children’s Hospital of Philadelphia, any physician who provided cognitive services as opposed to interventional services with either a speculum or a scalpel or some kind of stoked that you would put into some part of the patient’s body. But people who sat around thinking, so the infectious disease people, the geneticists, the developmental pediatricians, the general internal medicine type folk for children, anything that’s not procedurally based, but you sit there and you think about the patient, those are vastly under remunerated and the best illustration I can give you, that goes way back to friend and colleague of mine who was in fact a pediatric surgeon. And he said to me, Jim, when I have a kid admitted to my service with rule out appendicitis, I could take him to the operating room and take out his appendix, and make 10 times as much money as if I put him in the hospital and go visit him at the bedside every couple of hours and keep repalpating his belly. He CT really has a heart appendix and needs to go to the OR.
Dr. Coplan: So, part of what’s going on has to do with the fact that the financial resources for any physician who provides cognitive services, and I include developmental pediatrics in that. So, it’s broader than just developmental pediatrics. But this is, this is the, this is our little piece of territory. I think somebody needs to have or should have a kind of child sensibility, child psychiatrists, child neurologists, developmental pediatricians, anybody who really understands something about the mind of a child, the persona of a child, what makes children tick so to speak. It’s really pretty scary for me to think about giving somebody a checklist form who doesn’t know… Doesn’t have anything kind of feel in their fingertips for how kids work. But it’s… So, I’m not going to be territorial and say the developmental pediatricians have to be the ones to do it, but somebody who has that feel for children.
Dr. Coplan: And then the other part of it, which gets back to time as money, is a sensitivity to the family and the child is part of the family. How are the siblings doing or how is the marriage doing? And one of the things I used to say during my teaching to my trainees is the unit of treatment is a family. Unit of treatment is not just the child on the spectrum, but the unit of treatment is the family. And I had a rule and you know this, I had a sofa in my office and I had an ironclad rule that unless one of the parents is in jail, six feet under, or active duty holding a weapon, they both need to be there. And the picture of my sofa, I said this is my secret weapon because I would get both parents on the cell phone, talk to them both at once. Now I lost money in practice because I spent too much time with people. But I was always very sensitive to family function. I’ve already alluded to the fact that when I grew up, it was really not, doesn’t bear repetition, but it was not helpful to anybody’s development. We used to call my sister… So, it’s somebody who has the time and the sensitivity and maybe they have a social worker on their staff who talks with families, but some kind of compassionate, holistic and that word’s been beat to death. But it’s expensive. It costs money, that kind of time to put trained people into there. But that’s the way to give compassionate care.
Dr. Coplan: And it’s just not an inexpensive proposition. Insurance companies I think arrange it to make it easy for them to reject clients. They have a stop loss department, that’s what it’s called, the stop loss department. And I’ve had phone calls at four o’clock in the afternoon that say, if you don’t respond to this by five o’clock next business day, we’re going to cut Johnny off. Well, I got a phone call from a peer to peer reviewer and this was a woman who was a nurse. And she said, well, you know, you’re out of network for this insurance company. I said, well, you know, how long was the waiting list at the end network programs? And she, so six months. But they were in network and I said, okay, so what you’re telling me is if you woke up tomorrow morning and felt a lump in your breast, and I said to you in six months you can go to see a surgeon… You’re telling me that’s okay? And she said, no, no, no, I never said that. I never said that. And I said, well, I have your name, I have your phone. That’s exactly what you said. And the minute we get off the phone, I’m calling with the Syracuse… or the Philadelphia, I’m calling the Philadelphia newspaper and I’m gonna share the gist of this conversation with him. She said, no, no, no, don’t do that. Don’t do that. Monday morning, they called my house and my office back and they paid the bill.
Dr. Coplan: I was not going to mess around. Now I’ll admit I was personalizing it with her, but I was just so, you know, I can’t say the word on the air, but that was my victory. And I also a couple of times I’ve met with parents to go to due process or go to court and win judgments. But I mean, everywhere you looked from insurance companies on, it’s, you know, what can we do to save money? And I don’t have a magic answer to that one. I, as I say, I lost money in practice, so I know shining light, I’m an example of how to do it from that standpoint.
Mary: Yeah. I often say, you know, if you thought your child had leukemia and you were told that the waiting list is nine months to even see if they have leukemia, then it’s another, you know, six months to wait for treatment. I mean, people would be not just standing in line. And so that’s part of my mission is to get these out, these strategies out, my online courses out, to people who are even just waiting. Or maybe the child doesn’t even have autism. Maybe they just have a speech delay because as we know, it’s the same kind of treatment that would work to get a child talking and pointing and sleeping in their own bed and eating and people have to kind of get over the hump of using and saying and reading the autism word because you know, and I know with me, I was very, very much in denial for like 15 months before Lucas was diagnosed. I didn’t want to hear the word autism. So, do you have experience with people being in denial and like not believing it or by the time people reached you, they pretty much knew they had autism?
Dr. Coplan: Well, so let’s talk about that. And again, I don’t know if it’s fair to say, but it was 20 years ago two months ago. I was the second person you came to. But I think you said you had had your head in the sand. I think after you left my office your head wasn’t in the sand anymore.
Mary: Oh no, no. My head was out of the sand, you know, because I read, Let Me Hear Your Voice. And I realized that there was a lot I could do. I didn’t realize that there was a lot I could do. I didn’t realize there was anything you could do. So, I thought, well, why put pin this diagnosis?
Dr. Coplan: So, let me talk about first let me talk about denial. And in medical school you’re initially… Nobody says it in so many words, but you’re taught like, well, denial, is this thing? You have to get patients past or you have to get them over. The way that I began to think about denial was slightly differently. Imagine if a person is driving a car and they were in a terrible motor vehicle accident and they have an arterial laceration in, they’ve lost a huge amount of blood. When they come into the emergency room, they’re going to be cold, pale, clammy with a thready pulse because their periphery is all constricted. All the blood vessels are constricted to try to preserve what little blood is left for their core organs, and if I said to you, I’m going to take this patient and put them in a tank of warm water and make them pink and peripherally dilated to get rid of their vasoconstriction while they’re pink for 30 seconds, then they’d be dead.
Dr. Coplan: And so, denial in a way is a protective response at the beginning when the parent is dealing with this awful trauma because at some level they already know it’s true. They already know the diagnosis is true, but the denial is their emotional equivalent of vasoconstriction to keep themselves alive during that period of maximum emotional stress. So, it’s okay. And what I want to say is denial is okay for a period of time and if you are in denial, there’s nothing to be ashamed of. It’s nothing to be ashamed of. It’s nothing somebody should try to get you over. But what I would say to my trainees, so what you do in the emergency room is you plug the patient into a big IV bag and he’d give them blood or plasma or fluids and you replete, you refill their circulating blood volume so they’re no longer in hypovolemia shock and then they’ll let go of their vasoconstriction though, let go of their denial because now you’ve replenish their core deficit.
Dr. Coplan: And a lot of times you may see a mom is in denial because her husband is out in deep space and not buying into it at all. Or because her mother-in-law is going to guilt her. We never had anything like this in our family. It’s only after I spend every year or some other stuff that… so the mother may be in denial or the father may be in denial because they’re protecting themselves. And what I tried to ask myself, cause I used to want to take people in the office and go wake up, wake up, listen to me. That’s crazy. That’s not the way, that’s not compassionate care. You can’t do that. And then I had to kind of get down under it and think, why are they in denial? They’re in denial because this is protection against something.
Dr. Coplan: And I tried to have them both on the sofa and what I would do with both mom and dad there, turned to one parent and say Blah Blah Blah, whatever. And that parent would respond, not turn to the other parent. And I would say, what do you think about what your partner just said? And I would get the two of them talking to one another, and sooner or later the tears would come, and the denial would fall away as I was able to help people get back on the same page with one another. I mean sometimes one parent didn’t want to say anything because they were protecting the other parent. Well sometimes my parents had been trying to tell the other parent, but they’d finally given up. All kinds of permutations. So, denial at the beginning is, is not a bad thing, but denial that goes on forever. That’s not good. That’s like being stuck at one stage. And if you’re stuck at one stage, then you need help to get unstuck.
Dr. Coplan: And I mean maybe the woman had a termination of pregnancy, or maybe… I had one woman where she herself had been the product of father-daughter incest and she was so ashamed, and I said, that has nothing to do with your kid’s autism. And you could feel the rock lift off her shoulders. So, parents have reasons for denial that we might not even suspect. But if you can kinda sit and… Pediatricians don’t usually do that. Neurologists don’t usually do that. Child psychiatrists don’t usually do that. I’m a very odd duck because I kind of took license with my MD degree. It’s like a Green Lantern, you know, you can use this force for good. And I kind of delved into feeling areas that were technically not my business, but it was to help the parents be adaptive for the child’s sake. And so that’s where if you find that you’re stuck, if you’re stuck at the stage of anger or the stage of guilt, or the stage of sadness.
Dr. Coplan: My father would start at the stage of anger. He was angry. Until the day he died… And our house was this little fortress and no outside person was ever good enough to help my sister and on and on and on and on. He was stuck there and we were stuck living with him. So, I know what it means to live with somebody whose stuck So denial is a protective reflex. And instead of being ashamed of it, sit down and say, Yep, I’m in denial. At some level, I probably really know what I’m denying. Otherwise I wouldn’t be so worked up about it. But how do I get myself the help so I can move safely beyond this protected state? Yeah, I would rephrase it like that.
Mary: So, I remember being on the couch with my husband to get the diagnosis of autism. And Lucas, we already knew he was probably going to get the diagnosis cause a month prior we went to a psychologist who gave us a diagnosis of PDDNOS. And you also did an IQ test and said, Lucas, also had, at the time it was called mental retardation. So that kind of freaked me out. And I asked him, I said, well, we have an appointment coming up at Children’s Hospital of Philadelphia with a developmental pediatrician. You know, I’m assuming I should go there for, you know, what would be a second opinion? And he’s like, why, why go there? I just told you what he has. So, like, you know, deal with it. And I’m like, eh, that was so backwards at the time. So I, you know, I was very glad that I did pursue a medical diagnosis with a medical doctor because you know, there are, it’s not just like you just go into the clinic and do this checklist and you diagnosis it. There, you know, you would have us if we hadn’t, maybe… For some kids will have hearing loss or do genetic testing or do metabolic screenings. You know, there’s other things that can look like autism or make autism a lot worse that a developmental pediatrician knows that other specialists don’t know.
Mary: But I remember being on the couch and we were both ready for a diagnosis of mild autism. But you diagnosed him with moderate, severe autism. And when I told you that the other psychologist gave him a diagnose of mental retardation, you said, well that wasn’t really fair that, you know, he didn’t have language. He wasn’t testable at this moment. We hadn’t started therapy, you know, like that we should, you know, that you would only recommend that, you know, later down the line at five or eight like that. We also asked you about medication and you said, you know, you would not recommend medication for him until a full ABA program was in place. Like that was our marching orders, you know, get ABA in place and then we would meet with you to decide, you know…
Mary: But I think the whole idea of, and I’ve seen this in my practice as well with my clients is, is people, parents, I know myself, but many parents want to hinge on, it’s just mild or… in the past when we use the DSM IV, it’s just PD analysis or just Asperger’s. And we got PDLs in June of ’99, moderate severe autism with you in July in ’99. Then we went to a psychologist from CHOP to get baseline, real baseline testing. And she tested him and diagnosed with PDD nos again. And so, I had you and…it was Dr. Radcliffe who was a psychologist at CHOP at the time in the same room. And I said, okay, so you’re saying moderate to severe autism, you’re saying PDD nos. Like, which is it?
Mary: And you, I mean, you had so many wise things that you taught me over the years, but one of them was like, he’s three; all you want to know is what he’s going to be like at age eight and neither one of us can tell you. And the closer you, you know… it’s like saying light red or dark pink. It depends on the day, depends on what testing is done. Like I remember with Dr. Radcliffe, like he was there for psychological testing and we got a soft pretzels, which he loved, and we were in the waiting room and I was holding this soft pretzel and it was like a doll play scenario with a plate or whatever. And for whatever reason Lucas came over, ripped a piece of the pretzel on and put it on the plate. I’m sure that got him big points for play, which was weird, you know, like he’s… but like that gave him more points and just, you know, made it look more mild, but you know, and she said, don’t just focus on language, focus on self-help skills and those sorts of things, because those are going to not only be a better predictor of IQ in the future but also a predictor of how functioning is going to be and how mainstream he’s going to be. And don’t focus too much just on table time and getting his language up and miss all those other big pivotal pieces. But I ensure you in your vast experience, you’ve had many parents where they really want to pinpoint where the child’s at and that’s a very slippery slope. Right?
Dr. Coplan: And in fact, what I’ve said to people is I can give you a map of the territory or it’s like a chart of the harbor maybe but there’s fog out there. I know there’s an island here. There’s a riptide over here and rocks over here. But because it’s foggy out there, I can’t tell you exactly where your child’s boat is at the moment. There is this territory, there are these hazards, there is this ship’s channel. But it would be unfair to your child for me on the basis of an hour in the room with him to give you a prediction with that degree of precision. Now let me back up for a second. One of the differences between psychological testing that Jerilyn Radcliffe did and the way I arrive at a diagnosis, and I respect this, and it’s like there are different ways to get somewhere; psychologists put a lot of value and correctly so on what they can test in the room and demonstrate in the room. Whereas as a physician, what I’m taught is a lot of the times you make the diagnosis based on the history.
Dr. Coplan: So, parents come in and they say to me, my child doesn’t do this. He does do this; he doesn’t do this. He does do that. I attach a huge amount of weight to that and I’ll try to do some testing at the table, but basically or predominantly, well maybe not basically or predominantly, but to a larger degree my diagnostic impression is going to be formed in at least equal parts by what I see and what I hear. Unless there’s a disconnect between those two things. If the parents say, oh, he doesn’t do x, or he does XYZ, but I can’t get into… But when they align, it’s like two legs of a stool. But I’m going to put a lot weight on the history where a psychologist by the nature of the training and by design, they’re gonna be Bailey skills element or giving a Dawson if they’re going to give whatever, and they’re going to go much more by the numbers on that piece of paper.
Dr. Coplan: And those may be discrepant, and it doesn’t mean one person is right and one person is wrong. What it means is we came to our diagnostic impressions using different subsets of the universe of data. Now and again, but let me come back to your larger point, on that first day when the kid doesn’t even understand that he’s being tested and that his job is to do his best for this strange adult that he’s never met before, It’s not fair. It’s not professional on my part to conclude that he couldn’t do at X; all I can say is he didn’t do X. I can’t say, and this is another mistake that teachers make, it’s another mistake school psychologists make, I don’t think behavioral psychologists make it but school psychologists and teachers will say he refused to do X in class. What you need to say is he didn’t do X in class. Put it on yourself and say, I was unable to get him to do X in class rather than impute willful task refusal to the child on day one.
Dr. Coplan: If the kid doesn’t understand what the game that’s being played here and my job is to jump through Dr. Coplan’s hoops, I can’t make a conclusion from that. On the flip side of that, if by sheer luck that day, he puts the pretzel on the plate and gets points, good for him. I’m not going to take it away from him. So, there were discrepant answers, but I think the professional answers to say, what we need to give you today is knowledge of what you need to do tonight and tomorrow. And anybody who claims that they can predict five years from now is really blowing smoke because that technology or those skills really aren’t there to hold onto your wallet when somebody tries to take that line with you.
Mary: Yeah. So I remember, you know, when you gave the diagnosis, like I said you recommended ABA, applied behavioral analysis program, and I know many years have gone by, two decades, since you diagnosed Lucas, but, and you…
Dr. Coplan: We’re not older, just Lucas, right?
Mary: Yeah. And so I, and I know you retired from clinical practice five years ago, but you know, within the past when you were practicing the past 15 years, did you continue to recommend intensive ABA programs or did that depend on the child? And what level of ABA programming did you usually recommend for a child with moderate severe autism?
Dr. Coplan: Okay, so you put in the qualifier, moderate to severe autism kind of at the end of your discussion. But I would see kids at 16… I had a child referred to me as 16 for a reading disability because he couldn’t understand the social content of stories. It was not a reading problem at all. It was a theory of mind problem and I don’t think that kid would have needed ABA. He needed social stories and insight-based intervention, but for somebody who you need…
Dr. Coplan: There’s an old Kentucky recipe for rabbit stew. And I used to say this in the office also. Okay. Maybe I never said it to you. There’s an old Kentucky recipe for rabbit stew where the first line on the recipe says: first catch a rabbit. And at the very beginning the object is to get the child to come, sit, attend, reciprocate, and that’s like catching the rabbit. And then once you have that basic skill set imparted, then you can use that skill set to impart more complex skills, reciprocity, self-care, communication, the fact that when I say, milk that person out there is going to give me the milk, which they might not learn through incidental learning. Kids without spectrum disorder are graded incidental learning. They do something once by accident and then catch on right away. You never have to teach them again. So whoa, where did he learn that? Kids on the spectrum often need explicit, you know, that they need explicit learning, but until the kid is sitting at the table and attending and he knows now what the game is, it’s being played and it’s not a game, although you make it a game, right, to engage the kid. The object of this is for me to acquire a new skill set and that the child may have say that to themselves. They don’t internally verbalize it. But definitely ABA is a really proven time tested, proven way of imparting new skills to somebody who may not be available to social learning or trying to appeal to verbal inducement of some other clients. So, I continue to endorse our ABA in that kind of situation. Absolutely. Good on me because 20 years ago I had come from an academic center that was very down on ABA where I’d come from before Philadelphia. So good for me.
Mary: Yes, you were pro ABA and that was great because I was, you know, all about getting Lucas into an ABA program since I had read, Let Me Hear Your Voice a couple of weeks prior. So, okay, so you went on to write a book in 2010, and it’s called Making Sense of Autistic Spectrum Disorders: Create the Brightest Future for Your Child with the Best Treatment Options. And I know you had, you know, put your heart and soul in that book and it is still, it’s still available. It’s still selling well, and you’ve gone around and have done lectures and keynotes and stuff on that book as well.
Dr. Coplan: Yeah. Right.
Mary: And you also are in the process of maybe making some videos and trying to spread your expertise a little bit more out in the field of social media.
Dr. Coplan: Actually, I got into the water before today’s interview and if you go to my website, www.drCoplan.com, no E, no D… C O P L A N. And then you jumped out to my YouTube page, I got up a video up this morning. Previously the posts on my YouTube page had been, live footage of me giving a lecture to an audience. That’s okay. And I was very pleased to see that one of my lectures had gotten like 20,000 views or something since it was put up. I was rather pleased with that. But now I’m finally an old dog, new tricks. I have a Webcam, I have a screenshot recorder, I have a video editor. So now what I’m doing is putting up, and I put the first one out this morning, where I talked directly to the parents or whoever, teachers or healthcare or mental health providers to try to make some of this stuff accessible.
Dr. Coplan: And I actually learned this. I’m actually taking music lessons online. I’m not good enough to play. I put blues, harmonica lessons online and each lesson is about 15 minutes long. And I said, if this guy can teach me how to play harmonica with 15-minute clips online, then I can certainly put my material online in a way that parents can digest easy bits. So, I’ve actually started doing that. And I think putting my first toe in the water was the hardest. So, from here on you can keep tabs on me and your viewers can keep tabs on me. So, go to the website, click on the YouTube. The first one will be the front up this morning.
Mary: Alright, great. So that’s drcoplan.com is the way people can follow you. So just to wrap it up, so part of my goals for this podcast are that parents and professionals be less stressed and lead happier lives. So, it’s not all just about strategies and trying to get the child to his highest level of function. We only have one life and I really do believe that we can… all of my podcast guests, we kind of wrap it up. So, are there, what are the key advice, pieces of advice, strategies you can give to reduce stress in the adults’ lives and anything parents or professionals or the same advice for either?
Dr. Coplan: So, I read a video blog by Lori Una if I’m pronouncing her name right, and when B and cheese.
Mary: She came on my podcast, I forget what…
Dr. Coplan: But like you are a very high-powered achieving person, dynamic person. And she said, look, we finally got used to the fact that we’re just not going to be perfect; if our kids’ clothes don’t match one day. That’s okay. It’s alright. And I can also speak from personal experience, having had the opposite experience in my family of origin where everything had to be just so, and in fact in the long run that was more destructive to my sister’s development and to all of our mental health than just saying, you know, life isn’t perfect. It’s okay. And I think parents need to guard against their folks out in the autism world who are fear-mongers and they sense that they can capitalize on parents’ anxiety as a way of making a quick dollar to be very blunt about it. And they still engage in fearmongering. If you don’t do this, your child is doomed, kind of an approach.
Dr. Coplan: The problem is it’s a chorus. And there were these people over here saying it. Most people over there are saying it and this people over there saying it and parents were thrown into a panic even more so than they need to be. So, you, this is not, your child was not a little bottle of Nitroglycerin and if you handle it wrong, it’s going to explode, and everything is lost. It’s not like that. Children are very resilient. Even kids on the spectrum are resilient. Parenting is trial and error. If you’re, if you’re the parents of a one and only a typically developing child and you’re learning as you go, your kid is resilient and they’re gonna withstand most of your gaps without a long-term consequence. This is not a do or die situation. And in fact, being a little bit unwound, it’s good. Bear in mind that the reverse genetics is a chance that as the parent of a kid on the spectrum, you may have more than a touch of anxiety or perfectionism yourself. Get in touch with that, learn how to let that go. Exercise through yoga, meet with friends, whatever it is.
Dr. Coplan: I had a very good colleague who once said, Ruby Salads are, and she was a therapist who said this, your child with disability is a member of your family, but your child’s disabilities should not become the center of your family. And I think those are words to take to heart. If I could say anything, if I could go back 60 years and talk to my father, you know, you were talking on your 20 years later blog post, what would you say to your younger self? That’s what I would go back and say to my dad. Of course, I can’t do it over. But that’s what I would say is, it’s okay if you didn’t get the clothes done today, it’s okay, and you’ve gotta pick which hill you’re going to die on, so to speak.
Dr. Coplan: And most things aren’t worth it. And if you only, and I had a mother tell me this, if I only get 95% of the things on my checklist done tonight, that’s okay. And this is another mother, and the rock kind of lifted off her shoulders. And then she also said, and if there are some days, and this was a kid who had CP, he had drooled, and she said I didn’t want to touch his poopy diaper. I didn’t want to touch his drool. And I looked in the mirror. At first, I thought what kind of a terrible mother am I?
Dr. Coplan: And then I knew, I saw all those feelings are okay, all those feelings are okay. You can just sit up in your chair and all that is okay. And be kind to yourself. And then the next day you pick up the cuddle and you start again, and it’s, it’s alright. You know, we’ll take a deep breath. And you said something on your blog post, which is how I also closed my book with the very same line: It’s not a sprint, it’s a marathon, and you’ve got to pace yourself and save some of your energy for the next month.
Mary: And I actually say it’s a marathon on a roller coaster because a lot of times it’s not a straight course and there’s lots of downs and lots of taking two steps forward, one step back and a lot of it is trial and error and you’re going to constantly be changing what you need to do. And I wouldn’t get too focused, like you said, don’t get too focused on where your child’s at on the spectrum. I mean, he’s a person with strengths and weaknesses and we just have wanted just continually like Lucas, you know, my goal is that he reached his fullest potential and he continued to reach his fullest potential. It’s not a finite thing. He’s only in his early twenties, so that bar has to stay high, so he remains reaching his fullest potential, whatever comes down the pike.
Mary: And we talked, you know, be as independent, as safe as possible and as happy as possible. And that really is the goal, I think for all our kids, whether they have autism or not. So, okay. So, I loved having you on. I think we’re going to have to have another session with you in the future. There are so many more areas we could cover. And so, thank you so much for your time today. And we talked a little bit about my, you know, blogs and my podcasts and anything we mentioned that is relevant, we’ll put in the show notes, but you know if you have a topic where you’re not sure if I have anything on it and the best thing to do is Google Mary Barbera and the topic, or whether that’s the potty or language or problem behaviors or kicking or getting thrown out of preschool, whatever the situation is, I probably have a video blog on it. Or if I don’t, you can email me and let me know that I should be doing one on the topic that isn’t out there. So, I hope you continue to listen to my podcasts and watch my video blogs and also join my online courses. And the best way you can find out more about that is through Marybarbera.com/workshop. So, thanks again for Dr. Coplan to be here. His website is DrCoplan.com and I will hopefully talk to you next week on the episode.
Mary: Thanks for listening to the Turn Autism Around podcast with Dr. Mary Barbera. For more information, visit Marybarbera.com.
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