Transcript for Podcast Episode: 093
Autism Detection: A Summary of Dr. Ami Klin's Autism Work
Hosted by: Dr. Mary Barbera

You're listening to The Turn Autism Around podcast episode number 93. I'm your host, Dr. Mary Barbera. And today I'm going to do a solo show for a change. I've done a lot of interviews, so I want to take the work of Dr. Ami Klin, which I really came to know starting last year. I want to take three lectures that I attended from Dr. Ami KLIN as well as a new article that was written by Dr. Ami Klin and some coauthors entitled Affording Autism and Early Brain Development Redefinition. I know it sounds really technical, but I'm going to break it all down and tell you why you need to know this information now.

Thanks for tuning in to another episode of the Turn Autism Around podcast. Like I said, I'm going to be looking at the work of Dr. Ami Klin and talking about the need to know information. I don't know how many of you know that are listening, but I just completed the drafting and the writing of my second book, which is called Turn Autism Around A Parent Guide: An Action Guide for Parents of Young Children with Early Signs of Autism. That subtitle's giving me a little trouble memorizing it anyway. Turn Autism Around is for parents of children, one to five year old with autism or signs of autism.

And why I really felt the need to write a second book, even though my Verbal Behavior Approach book is still selling well and I have my online courses which are really turning things around for parents and professionals every single day. Why I wanted to write the second book and it ties into the work and the research of Dr Ami Klin really nicely, was I really felt like I needed to go back down the mountain and go and really help parents of children with early signs of autism. We need to save the baby, save the toddlers from a life time of disability because the work of Ami Klin really shows that we can maybe we can't prevent, you know, autism, but we can really change the trajectory of autism. We can change the whole course of children's lives, and we can prevent many of the things that often accompany autism.

So back to my book just to update you all. My book will be published by April of 2021 in time for Autism Awareness Month. It will be a hardback book. It is being published by Hay House, which is a big publisher. It's being distributed by Penguin Random House. Dr Temple Grandin has written a fabulous forward that I'm excited to share with you. It's gonna be on Audible. I'm going to read the book. It is literally going to be a guide with chapters on talking, advance talking, social skills, potty training, beating, sleeping, desensitization to doctor and dentist, haircuts. It's going to be a guide so that parents don't have to wait in line, wait and worry.

If it's just speech delay, great. Read the book. It's totally going to be appropriate. If it's early signs of ADHD. If you have a diagnosis of any kind developmental disorder for a young child, it's going to be great. And even for older kids with moderate severe autism who still have problems with behavioral issues and feeding and sleeping, the book, while it's geared towards younger kids, is going to be helpful. So basically my first book, The Verbal Behavior Approach, and all of my work, my courses all are pretty much geared towards kids and even adults who are functioning at a one to five year old level for language cognitive skills. And so really, my second book is going to be a game changer, I think, in the field.

But the book won't be out for a while. So in the meantime, I'm going to give you some glimpses and buy my new book is not very heavily. It doesn't have a lot of references. It doesn't have a lot of research. It's an action guide based on my two decades of experience, based on all the research I know. But given out in a very layman's, child friendly, positive way. But one of the researchers that I came across only after I started writing my book and book proposal was the research of Dr. Ami Klin and how I came to know him was he presented at least last year and this year at the National Autism Conference, which is usually held at Penn State University. It's a great conference. I live only two and a half hours away from Penn State main campus. So it's an easy drive. It's been a fabulous conference. I've presented there very long ago when I was the lead behavior analyst for the Pennsylvania Verbal Behavior Project.

So I presented for a few years there. And now I've been attending and getting my continuing education credits for my board-certified behavior analyst certification. So it's a great conference I came upon. Dr. Ami Klin. I went to his workshop last year, which I went to because I was writing my new book. He was talking all about early detection and it really has his content just blew me away. So this is episode 93. So before I get really into talking about mostly this article, but also seeing his lectures not only from 2019, but also two lectures that he did at the National Autism Conference online through patent through Penn State. I'm going to link this article, which Dr. Klin has given for free, as well as those three lectures, as well as all his notes. I'm going to link those in the show notes. So, MaryBarbera.com/93, if you are a professional or researcher, are interested in learning more, I would encourage you to watch the lectures, read the 15-page paper.

But if you're a parent, I am bringing this information. I'm summarizing it. So no need for you to dove in and get the nitty gritty and the research because really important that you just take action. And that's what my mission is about. OK, so let me get to summarizing all of that. So when I was at the 2019 presentation with Dr. Ami Klin during a question and answer segment of his presentation, I think towards the end of his presentation, I asked, do you think autism can be prevented? Because we have seen in my online courses and through my work that some kids are showing signs of autism. Some kids are even diagnosed with autism. And we are literally having some success with turning things around to the point where we believe that a child maybe would have been diagnosed and is not diagnosed or maybe turn things around so that they're not looking like they have autism anymore.

So Dr. Klin said no, based on his research, he believed that because of his research that autism itself could not be prevented. But also, based on his many years of research, he believed wholeheartedly that behavioral disorders, speech disorders and intellectual disability, which is an IQ lower than 70, could be prevented. So basically. Maybe autism in general can't be prevented. But, you know, moving them to the higher functioning level of the spectrum or if it's not autism is not diagnosed. Maybe it won't be diagnosed. So the other point I want to make is we also don't know. Dr. Ami Klin talks about the sub threshold autism symptoms. So you might have a child with speech delays or other symptoms that are going to end up being something else, like maybe ADHD or maybe a learning disability or maybe speech delay or maybe nothing. So we just have to kind of work like. It all depends on us to try to change the trajectory.

The other important thing about Dr. Ami Klin's work is he views autism as a disruption in the child caregiver dyad of reciprocal vocalization, babbling back and forth. Eye contact, back and forth. Imitation back and forth. And for some reason, Ami Klin believes that it's more of a genetic issue based on his eye gazing studies. Is that child caregiver dyad gets off track, off kilter and the child stops looking at you so much. Stops babbling, stops vocalizing or doesn't progress to that and gets off track with his milestones. And if a parent doesn't know how to pull that back, which. Ninety-nine-point nine percent of parents are not going to know how to pull that back. It gets more off track, then they get more behavioral issues. They get more tantrums.

They might, you know, start refusing food and stop sleeping and stop sleeping well and all kinds of things so that they're developing and they're getting older by the month. And all of a sudden, you've got a really big gap in terms of that caregiver dyad. So his research shows that we really need to pull that back in. So, as I said, I'm going to link to this really important paper. But the paper is basically a call to redefine autism and to stop for researchers and policymakers to stop viewing autism as this lifelong disability that's severe, that is often accompanied by intellectual disability and severe behavioral problems and language delays and start viewing it more as a public health concern.

And we really need to change that. We have done some work. Like in 2007, the American Academy of Pediatrics recommended universal screening using the MCHAT which I've done a video blog on the MCHAT, which we'll link in the show notes. But the screening tool, even though it's good and it's easy and it's only like twenty-three questions, I think it can be filled out by, you know, parents in the waiting room. It still has problems with false negatives. It has problems with even kids that do screen positive very like less than half actually go on to for further screening to get a diagnosis. And most kids aren't diagnosed actually until they're in school, giving way to a lot of deviation from normal developmental milestones. There's also, as outlined in this paper, funding issues.

So IDEA, I don't know how many of you know about IDEA, but it is the Individuals with Disabilities Educational Act and it covers most people think IDEA covers kids three to 21 or school age to 21. It actually covers part of IDEA called Part C of IDEA, covers kids from birth to three years of age. But that part C of IDEA only takes up three point five percent of the 13 billion dollar budget per year, which means that more than 95 percent of IDEA federal funding goes to kids above the age of three to 21. So birth to three services, birth to three. Everything about birth to three is underserved, undervalue and definitely underfunded.

And this is where we can make the most bang for our buck. It's the time, especially if we train parents, which is my whole thing, which is why I wrote that book. The second book and why I invested for the past five years in online courses to get parents directly in to talk about and show them how to repair that parent child app. We also have issues with denial. I was in denial for over a year when my husband first mentioned the possibility of autism when Lucas was 21 months of age. I've done a couple of video blogs on that we can link. There's also the issue of regression, which Lucas regressed after fifteen months of age after his first year. He regressed with sleep, he regressed with playing sing-songy games. He regressed with eating. He regressed with pointing, with waving. These are all critical.

And if a child regresses in any area, it is a huge red flag for autism. So I know how desperate I was to make everything go away and look and be fine. I thought if I looked into autism like my husband wanted to, that the curtain would fall all my life and life that I, as I knew it would be completely up uprooted, which it was. But being in denial for over a year certainly didn't help Lucas. It didn't help me. Back then, you know, would it? Yeah, it probably would have made a huge difference if I had the information I have now. Two decades ago. To have back in 1998, when my husband first mentioned, yes, I think we would have a very different life and Lucas would be in a very different point.

Now, he is an adult. He's 24 years of age at the time of this recording. And he has moderate severe autism, mild to moderate intellectual disability. He needs 24/7 supervision. And we did intensive behavioral intervention, but not at 21 months when my husband first saw those early signs. We waited because of my denial mostly and false reassurance. And we waited until he was a little over three. Thus, we lost that really critical space where the brain, they call it more plastic and table to be changed a lot more. The brain is growing and synapses are expanding by the first year of life. Your brain, the baby's brain grows and expands like doubles in size and synapses go through the roof. And even in the second year, you have major synapses being generated. So if you catch this off track behavior, in many cases, you can pull it back and make it make the symptoms a lot more mild and potentially change the entire course of a child's life.

So getting back to funding just real quick, I do know that the Klin paper says that most of the federal funds, not just 95 percent, go to three to 21 years of age. But most of the federal funds really are consumed by adolescents and adults with severe autism who need major educational support, medical support and just ongoing support to live safely. And I know that for Lucas, you know, he has received a lot of funding because he needs it. And that's what we're trying to prevent. That's why I'm writing my second book to go back down the mountain and tell people you can afford to wait in line. You can afford to get a little bit of speech, a little bit OT unless your child is rapidly improving. And you know exactly what to do. If I were you as a parent, I would leave no stone unturned. I would get the information I needed, which is going to be out in my book, but not until April.

But it's also in a lot of my podcasts and video blogs. But it's also really in my online courses, which you can find out more at MaryBarbera.com/workshop. But Dr. Clennon colleagues say it is not inevitable that children with ASD will be severely impacted. And there's a ton of research to show that this doesn't have to be even in my first book, the verbal behavior approach in in nineteen ninety-nine. Like, literally the day before or after Lucas was diagnosed, I went to a lecture and Dr. Glenn Dunlap from Florida was presenting and I went up to him afterwards. I think it was the day before his diagnosis because I thought Lucas had very mild autism. He was going to typical preschool. He didn't look that bad. He wasn't doing anything really with self, no self-injurious, no aggression, no self-stimulatory behavior. He'd just look like a quiet kid.

So I was confident that even though I had been in denial, that he would have mild autism and he wouldn't need much treatment. And Dr. Dunlap said, you know, I've been in this field for 30 years. And he said and I. Of course, I didn't have Lucas with me for him to look at. But he said, I've heard these stories where you think, you know, kids like Lucas, like he's almost three and he's looking pretty good. And you think I you know, I can kind of rest on your laurels. You don't have to do too much. And he's like and I look at them and I think that they should do okay. And then by age eight, some of them do okay. But some of them don't. And they look even worse. And he said. And then on the other hand, sometimes I see kids who are severely impacted. And that three. And I think, yeah, this is not a good not you're not going to be a good outcome. And by the time they're eight, some of these kids really turn around.

And so his advice, which I have repeated to others, is to treat any signs of autism as early as possible. And then that way you will be looking back like I know Lucas still remains very impaired, is going to need lifelong treatment. But I know once I got out of denial and got treatment, he has had the best treatment that I could advocate for that I knew about. And when we knew better, we did better and we pivoted. So I don't have any regrets besides being in denial, which, you know, you can't beat yourself up like you just have to. Like I said, when you know better, you do better.

And there's also another example. Like I wrote a I did a video blog on. Can you tell? Can you predict how a two-year-old is going to do at age eight or 18? And the answer is no, you cannot. And really, it's most important to act to not even wait in line for a diagnosis, just get information. Half the people in my toddler online course, their children does not have an autism diagnosis yet. They are really just trying to tackle it while they wait before they get a diagnosis. Some people do have a diagnosis, but it doesn't matter if you have a diagnosis or not. You have to learn what to do to get that parent child dyad back on track. And to teach them how not to be picky eater or how to sleep through the night in their own bed, how to go to the doctor, dentist, haircut's without tantrums, all those kinds of things that by trial and error I learned how to do in the past two decades.

So let's talk about the ASD, Autism Spectrum Disorder, plus intellectual disability. Lucas has both diagnoses, as I talked about, the rate of having both. And like I said, Dr. Klin, when I asked him, can autism be prevented? He said, no, but we can prevent the behavioral disorders. We can prevent the intellectual disabilities and we can prevent some of the severe language disorders that often accompany autism. So ASD plus intellectual disability occurs in twenty seven percent of Caucasian children. It's almost double the rate for African-American children. Forty seven percent of black children have both ASD and intellectual disability. And Hispanic children are right in the middle at 36 percent. This is all in this paper.

So that is very disturbing in light of the Black Lives Matter movement. And in light of everything, social justice. And it's not that African-American children have some genetic defect that's causing them to get both autism plus intellectual disability. It is purely lack of access to diagnosis, to detection, to treatment, to parents. And in this paper and in other research, it's not just race. It's also socioeconomic status. You know, when I was back in multiple years of intervention for Lucas and I went to due process all the way up to federal court for him, which is like educational court. I often said, like, you know, at the time I had a master's degree. I'm like, I have a master's degree. I have a car. I have a computer. I used to run. I used to be a nurse manager. I used to manage, you know, all kinds of things. It's like I had a whole filing system for Lucas.

And part of the reason I said I was in due process, which I've done a podcast on, on due process and legal issues, but part of the reason I was fighting so hard and founded the local Autism Society is because if I was going through all of this struggle and I had really everything going for me in terms my education, all my financial status might, you know, lived in the suburbs, had a car, I'm like, can you imagine the single mom who English as a second language doesn't own a car, you know? Doesn't have a computer. I mean, this is back in the late 90s, but half the reason I fight so hard is for these underserved populations and I want to just empower parents that you can indeed change the trajectory of your child's life and not just for little kids, but especially for little kids.

So that is has been my mission and still is my mission. So in general. In summary, Klin and colleagues really want us to change the view of autism spectrum disorders. They want to move away from thinking from policymakers and researchers thinking that it's this rare disease and genetic origins and that there will be lifetime disorder and lifetime care will be needed.

And we want to change that to more of autism is common. And it's one in 54 right now, plus one in every six children has some kind of developmental delay or disorder. So this is very common. And Klin and colleagues suggests that we should be treating autism or we should be looking at autism as a very common thing. And we should start to look at the care that extreme preemies get or infants with congenital heart problems. They are screened before they leave the hospital. They are set up with early intervention even before they're diagnosed with any kind of developmental delays. They are much more at risk of autism, as well as other developmental delays and disorders like cerebral palsy.

But we should be treating it as a public health risk. In my opinion, a public health emergency. And we should be empowering parents to know what to do, to know what to look for, to know how to turn things around, to know what to do if they are still having problems turning things around. So no need to wait. No need to keep worrying. Early treatment is most likely going to promote the best outcome, whether it turns out to be autism or not.

And this is really important information. So Dr. Klin and colleagues suggest that inborn risk should not equal a lifetime of disability. And even though autism is highly genetic, siblings are at least I don't have the research right at the tip of my fingers. But 18 to 36 percent of siblings, like there's a couple different studies, but about one in five siblings will go on to get an autism diagnosis if they have a sibling with it.

And the higher percentage of them will go on to have what Clayton calls sub threshold levels of autism traits. So some speech delays, some ADHD, some those sorts of things. So we need to know. Yes, it is highly genetic. But the where you fall on the spectrum is very much controlled by the intervention you receive. And so, you know, some people think that there are some very well-known people that might be on the very high end of the spectrum. And some of my former clients are driving and going to college, and none of them have gotten married yet. But, you know, there are, I just interviewed Kerry McGrew, who's a pretty famous person with autism. He's in his 30s and he very much wants to get married at some point. And so the sky's the limit, especially if we can turn things around earlier.

So the way autism is diagnosed, as many most of you know, I think is behaviorally with decreased eye contact, decreased attention, inability to imitate, that stopping of the reciprocal vocalizations. And these are the robust markers in infants. And these are all typical milestones that we can teach parents how to watch for.

I didn't know back in the 90s that it was my job to keep track of my child's development, but it very much was. Klin has these great videos, which if you watch his workshop shows, you'll be able to see them. But one video is really, really sticks out of my mind as being really key, so he has a video of two toddlers in a child wagon, a plastic wagon with a little door, and the two toddlers in the video are fighting basically over. One wants the door open, one wants the door closed. And Dr. Klein has showed the same video. To twins to twins with autism, to typical kids, to siblings of kids with autism, to autistic kids, all little kids, and has tracked their eye gazes. And identical twins will look at the same spot in different rooms. They'll be in different rooms. And they almost always look at the same spot, which is really fascinating.

But the kids that either have autism or go on to have autism will be focused on mostly on that door opening and closing. While the typical kids and the kids that go on to not have autism will be looking at the toddler's eyes, facial expressions. The fight between them about the door, they will not be focused on the door. So kids with autism just in that five or six minute video are missing all the kind of nuances of the social interaction and just focusing on the door opening and closing. And after watching Dr. Klin present last year and again to lectures this year, I'm kind of changing my mind a little bit on screen time. I did a video blog years ago. It's still applicable. I actually watched it because I'm like, you know, I should not be saying screen time is OK. Because if in five minutes you're going to miss hundreds of opportunities for social reciprocity and five minutes and then thousands of social opportunities to let kids watch the same repetitive videos over and over again is harming their brain.

My old stance on screen time is I wouldn't stop it abruptly. We need to replace it with good language and social skills. But as a parent, I know kids need engagement during all of their waking hours, as many as possible. That's 100 hours a week. That's really hard and really impossible. And sometimes within my courses, too, we use short bursts of videos as reinforcement because kids really like that. So I think it's eye-opening, though, that we really need to restrict it. We cannot have kids of any age watching hours of videos and especially the hours of the same videos where they're totally missing all the social cues and language and just focusing on objects. OK.

So we're ready to wrap things up. I do just kind of want to give you a quick summary. Everything the article, the three videos, any video blogs I mentioned are at MaryBarbera.com/93. Dr. Klin has done some fascinating research that's really going to help us. In the meantime, though, we need to take action. We need to empower parents to identify the early signs of well, even just the early milestones, keep them very engaged with what they should be expecting their child to do, to say, to imitate, when they should be walking. And we should empower parents to learn what to do, bring that child back into alignment so that they can learn socially and learn language naturally, as naturally as possible.

I do have courses and I do have free workshops. I talk about what you can do and tell you more information about my courses at MaryBarbera.com/workshop. I am always open to feedback about these solo shows versus interviews. I actually did ask Dr. Klin to come on to be interviewed a couple of months ago and he was really tied up with the whole COVID crisis. But I wanted to get this information out there because I think it's brilliant and I hope to have him on in the near future once things settle down for him. So don't wait. Dive in. If you are in denial or some client is in denial or their husband's in denial. Or their child's regressing or they don't know developmental milestones or they want to know more about the MCHAT Another great tip for parents and professionals is I've produced so much content now that you can just go to Mary autism, plus your topic, denial, regression, MCHAT, anything and something should pop up.

So also empowering parents just to just to find out more. I know the autism world is scary. Saying the word autism as a possibility is scary, but we just need to let parents know it's OK. Way back in 1999, somebody told me, you know, even when I thought it was just a speech delay with Lucas, when he was two and three quarters of age, she told me. She goes, you need to look into what they're doing for kids with autism, because if they are recovering kids with severe autism, then treating it the same way for a child with speech delays should be a piece of cake. And that is what got me out of denial and into looking into it. And it changed my whole life. And at some point, I think it's always good to look into it. I think, you know, parents of kids just with speech delays shouldn't be scared to look into how to help their child in any way. You know, you want to call it anything. I do have techniques to help turn things around. And Dr. Klin's research totally supports that parent led intervention.

And changing the trajectory of kids' lives is very much within reach and very much a possibility. So hope you enjoyed the show. I would love it if you would. Wherever you're listening, subscribe to my podcast. Leave a comment, give me a thumbs up, rate it, give me a rating and review on Apple podcast especially. That helps me get the word out. My podcast is approaching three hundred thousand downloads now. We are soon going to get to our 100th show, this is episode number 93. I'm proud of everything we've produced so far. So if you could subscribe, leave a great rating on review, that always helps to spread the word even farther. So thanks again for your time today and listening and I'll talk to you next week.