Sevan Celikian: Hi everyone. Welcome to the LeafWing Center podcast here. We’d like to discuss any and all matters relating to autism and applied behavior analysis. My name is Sevan Celikian, a behavior analyst at the LeafWing Center, and with me today I have my awesome colleagues and fellow behavior analysts.
Rei Reyes: I’m Rei Reyes. I’m a BCBA for the LeafWing Center.
Manjit Sidhu: Hi, I’m Manjit Sidhu and I’m also BCBA at the LeafWing Center.
John Lubbers: And of course I’m John Lubbers, a behavior analyst with the LeafWing Center and Sevan, like you said, this is a different topic for us today. Really something I’m excited about. I think it’ll be really interesting and a little bit of a deviation from what we’ve done in the past.
Sevan Celikian: Yeah, it’s going to be great. So to our listeners out there, we’re going to do something a little different today. Typically with each episode what we do is we pick one issue or topic and we do a deep dive. Usually that’s a common behavioral concern and we’ll explore assessment options, intervention options, and really go deep with one topic today. We want to switch it up and we want to get through as many questions relating to autism as we possibly can and we’re going to be basing these questions on the most commonly researched Google search terms on the internet as well as questions that we as practitioners find ourselves receiving frequently. So we’ll get through as many of these that we can folks. And if we missed any, please feel free to reach out to us, ask us, we’ll answer them for you. We’ll leave some contact towards the end of the episode. And with that shall we get started?
John Lubbers: Well, if I can add just one quick clarification for my own knowledge, Sevan and Rei and Manjit is these are typically questions that are just Joe and Jane public out there in the world are typing into search engines, right? And they’re asking questions. So some of them may be in a question format, some of these things may be in a statement, some of them may seem really obvious or not so obvious. Some of them may be relevant to you and to your situation or not. So it’s basically it really it’s a grab bag. This is the cracker jack box of question and answers for us for the audience, but the one thing being is these are the things that you guys, the public out there are asking in the search engine, so that’s why we decided to do that. Our criteria for include inclusion or what we decided to to use to include these in our podcast today was what was actually asked in search engine. So we didn’t filter these at all except just looking at what the most common ones are where we just looked at the top hundred or so most common questions or statements that were typed in there and we thought we would just go ahead and give answers and make comments and address those for your benefit.
Sevan Celikian: Awesome. That’s a great way to put it. Thanks John.
John Lubbers: Thanks guys.
Sevan Celikian: Are we ready for the first one?
John Lubbers: Yeah. Ready.
Manjit Sidhu: Let’s do it.
Sevan Celikian: Awesome. First question, how will autism affect my child’s? A great question. A really important question. Not an easy one to answer. Actually. We know that autism affects everyone differently and while cases of autism might have some similarities, no two cases will ever be the same. We have some individuals with autism that may be mildly or moderately impacted, while others might be profoundly impacted. Autism might affect several areas of development. These might include communication, socialization, play, academics, motor skills, executive functions. Among others. There might be challenging behaviors, present tantrum behaviors, difficulty communicating wants and needs. So this varies from individual to individual. There are other issues that are often correlated with autism diagnoses. These might include gastrointestinal issues, sleeping difficulties, toileting difficulties, as well as other issues. So it really depends. It really depends on a case to case basis.
Sevan Celikian: Next question. When autism is not autism, so in other words, can autism or a better way to say it, are there situations where one might think autism is present when in fact it is not? So there are some behavioral or other developmental issues that may look like autism, but they’re not. These might include speech delays without other developmental issues. They might include narrowed interests or sensory processing issues, food sensitivities, hearing problems, maybe obsessive behavior. So just because one of these or a couple of these are present, it doesn’t mean that there is an autism diagnosis. Typically autism cannot be reliably diagnosed until age two or so. So just because some of these issues are present does not mean that there is an autism diagnosis and an autism diagnosis requires an assessment from, from a medical doctor or a psychiatrist or psychologist and can’t usually be reliably diagnosed till about after age two.
Sevan Celikian: Next question. Where does autism come from? So in other words, what causes autism? So this is probably a very common question out there and also very difficult to answer because we don’t have any information on triggers or isolated causes of autism. So at this time there is no single cause for autism which has been identified. However, there is some research that indicates that genetic vulnerabilities or exposure to harmful chemicals during pregnancies, some abnormalities in brain structure and function, they might be linked to autism. However, none of these have been identified as causes or triggers. Where is autism most common? So according to the most recent information provided by the CDC, autism has been reported to occur in all racial, ethnic and socioeconomic groups. Well, it’s not specific to one region or one ethnic group or one geographic location about, and this is roughly about one in 59 children has been identified with autism spectrum disorder, ASD according to estimates from the CDC is autism and developmental disabilities monitoring network. ASD is 4x more common amongst boys than girls.
John Lubbers: And Sevan, I think this is an interesting topic. I know I’ve read as well that autism doesn’t respect ethnic or economic lines. So it affects wealthy as well as not wealthy people equally. It doesn’t have any racial or cultural discrepancies either. And I think too, one thing that I’ve read and I would like to know whether the sciences has been widely accepted but that the incidents of autism spectrum disorders is a little higher around freeways and then farther away from freeways and the city center and that the incidence is a little less, I don’t know whether that’s purely some sort of unsubstantiated correlation at this point or what, but I read some systems statistics like that as well, so kind of interesting discussion.
Sevan Celikian: It is interesting. Thanks for pointing that out John and that ties us into our next question which is Where’s autism most common in the world and that’s difficult to determine because the USA is one of the few countries that tracks and reports it’s autism numbers. And even our survey parameters need improvement because they contain some limitations. They only sample certain age groups from, from specific States. However, the data out there does seem to suggest that Hong Kong, Ireland, Japan, South Korea also have high rates ranging anywhere between one in every 27 and one in every 65 children.
Sevan Celikian: Next question. Where does autism affect the brain or how does autism affect the brain? We can spend quite a bit of time discussing this one. So there is a lot of information out there regarding this and an interesting research study that I came across, and this was done by Dr. Anderson at the Radiology Department in the University of Utah Health in Salt Lake City.
Sevan Celikian: He indicated that the duration of connections or synapses between brain sections and individuals with autism lasted for longer periods of time then in neuro-typical individuals. So in other words with autism, the brain might have a more difficult time switching between processes. This might be an explanation as to why individuals with autism experience sensitivity when exposed to several stimuli at once. Lights sounds, loud noises, people talking, that sort of thing. Also, autism does not affect one section of the brain, but rather how the neural systems work and that’s why it’s typically referred to as a developmental disorder and not a brain disorder. Next question, where did autism originates? So the first person to use the term was, and I found this I didn’t know that is I had to do some research, was an Austrian American psychiatrist, Leo O’Connor. He first described autism around 1944 and in 1980 the DSM3 the diagnostic and statistical manual listed autism as a diagnosis and referred to it as a Pervasive Developmental Disorder
John Lubbers: And before this too, interesting in terms of the evolution of it at various times between that 1940s and 1980s it had been called things like childhood, schizophrenia and other things. It only, more recently, like you noted, Sevan is become autism and recognizes autism and now the DSM, the Diagnostic and Mtatistical manual now refers to it as Autism Spectrum Disorders.
Sevan Celikian: I’m glad you pointed that out, John. The definition and the criteria, the diagnostic criteria, it has gone through changes and at an evolution over over time, so the DSM is always the most reliable and accurate and will have the most current diagnostic explanation of autism.
John Lubbers: You’re right about current because it does change is we’re on the DSM5 now and it’s for sure that there’ll be a DSM6 or even revisions or modifications on the DSM5 and it is possible that we’ll see some changes either in the name or the diagnostic or descriptive criteria for Autism Spectrum Disorders.
Sevan Celikian: Definitely. Next question, will autism be cured? This is another commonly researched and ask questions. So I think with the question like this, it’s important to differentiate between the terms cure and treatment, but this time there is no cure for autism. However, we know that effective research back treatments such as ABA therapy are available and we also know that with effective treatment, many of the symptoms and challenges and and skill deficits and challenging behaviors of autism can be improved. And that kind of ties us into our next question. Can autism be treated?
John Lubbers: Well, I hope you don’t mind but can I just add in really quickly? A cure kind of implies that we know the cause and at this stage of the game we really don’t know exactly what the causes, so it’s hard to really say we can cure it. That term has been used in the literature and it’s been a little bit controversial at times and it’s a little bit of an extreme perspective, but some people use the term here to mean that they’ve eliminated all the symptoms and all the things, the identifiers that were typically or previously associated with Autism Spectrum Disorder. And the elimination of those then implies that they’ve been cured, but we just don’t know what the cause is. So we really can’t say that right now.
Sevan Celikian: Yeah, and that ties us in really well to our next question, John. Which is can autism be treated? Yes. Autism can be treated. ABA therapy is a research backed scientific approach. It can be utilized to address skill deficits and behavioral challenges that autism presents. And like we said earlier, it’s important to note that treated is not the same as cured, but with effective autism treatment, many effected individuals can experience substantial increase in their quality of life. And I also want to point out that especially in our present day paradigm as as it stands today, there is a lot of movement toward an interdisciplinary approach in terms of treating autism. Luckily there are so many resources and services available to individuals with autism. These might include applied behavior analysis services, speech therapy services, occupational therapy, IEP teams with with goals that everybody’s on the same page on. So that’s really the direction that we’re heading in with with treatment. There are so many resources available and I think that’s what it’s all about and the communication between family members and professionals like doctors and behavior analysts and speech therapists, it can really help to optimize and bring forth the best and most optimal treatment results. So yes, autism can be treated and autism get worse with age. Another common question, it can get worse with age, with time, but, but it can also get better. So if there are certain behaviors and skill deficits that are not addressed early on, they can become entrenched with age and these can result in long term difficulties. On the other hand, though, with effective and comprehensive treatment, a lot of these important skills and replacing behaviors can be taught early on and these may improve an individual’s quality of life significantly. So yes, autism can get worse with age with time. But it can also get better, a lot better.
John Lubbers: And it’s a really interesting discussion there too. I’ve had this many times with the families that we’ve worked with and other professionals as well is and even school, you see this most often in school and maybe I phrase this comment in the terms of school, maybe it will help us understand the point. I’m trying to make the difference when when a student goes to kindergarten they learn skills throughout that year and then they go and if it’s additive or foundational and then they graduate, matriculate, go on to first grade and they learn additional skills built on those from kindergarten. And then second grade builds on those from first grade and kindergarten and it continues to kind of add over time. The thing that we see oftentimes with individuals with autism spectrum disorder, children with ASD is they’ll miss a lot of the skills that are being taught and are developing in kindergarten. And so when they become first-graders or the age of a first grader, they lack some of those skills that were acquired for the other students in kindergarten. And so over time their acquisition of skills is slower or different or however you choose to describe it. It’s different than a typical developing student, a typical progressing student. And so that can, from the outside perspective can look at, Oh, it’s getting worse over time. And it’s really what we’re picking up on is really the comparison at that age where that person is with Autism Spectrum Disorder compared to someone else their age and it’s the discrepancy. As the gap widens, it looks worse, but it may not necessarily be worse. It just the gap may have widened.
Sevan Celikian: Yeah, I think that’s a really important point, John. There are a lot of cumulative effects when it comes to learning. And one of the main things that ABA therapy tries to do is to really provide the pivotal behaviors and teach behavioral cusps. And these are skills and behaviors that will allow children or individuals to access more of their environment, to access more reinforcement, to access more contingencies, to promote more independence, increased quality of life. Essentially we’re teaching how to learn. So the kiddos are learning how to learn and yeah, it’s a really important point. So the sooner we catch these skill deficits and sooner and earlier we can teach the replacement behaviors and fill some of those gaps, if you will, the better. We’re setting up individuals for longer term success.
Rei Reyes: Yes. And then to add to that, what Dr. Lubbers had said earlier is that we really see the difference. When you start comparing a neurotypical student to the, say a student with autism because they are, they will be very different and that’s where we have very individualized ABA programs. And especially in a school setting, we have IEP and that’s what makes it more meaningful for our autistic students to kind of like work on the relevant pertinent goals from their perspective. So with that Sevan and folks, we’ll move on to the next group of the most common questions asked there on the internet and to begin, let’s see, Can autism be prevented? Let me think about this. If to prevent something, you must know the cause and it, and again, as Sevan had mentioned this earlier, there is no known single cause. So prevention is most likely not possible, but some folks have claimed a link between ASD and immunizations and this is a very heated topic and we’ve heard this over the last few years and unfortunately a number of parents have believed this link between autism and immunizations, immunizations that our children get in the second, third year. I think this is the MMR, please correct me if I’m wrong.
Manjit Sidhu: Not that.
Rei Reyes: Okay. So, but that research had long been debunked. It doesn’t have accurate information. However, the damage had been been done already and that’s why maybe we have these outbreaks of measles the last year or two. So to come back to the question, can it be prevented? As far as we know right now, no. And it’s like a public service announcement. It is still best to get your children, their immunizations as needed, as recommended by the medical doctors. Second question, can autism be fatal? It is not like, Oh I acquired autism and that’s it. And so you’ll be fatal. No, no, autism is not fatal. Maybe if we can stretch this question, maybe it can be, but maybe the behaviors that can be dangerous, that can lead to someone getting hurt.
John Lubbers: And I’m not even aware of any research right now that says the lifespan of an individual with Autism Spectrum Disordersis any different from someone who does not have ASD. So interesting. It’s a really interesting question and a really interesting topic. But yeah, I don’t know that there’s any research out there yet.
Rei Reyes: Yeah, I don’t think so. I mean, it’s not a disease per se like, Oh, I acquired something and my health is deteriorating and it’s not like that. The next question is actually a group of similar questions. So can autism be inherited? Is it heriditary? Can it run into family or can it be passed down? So the are very common questions. There are cases in which it is likely, I mean the research had shown us and even from our own experience out there with the last few years that we’ve been working in this field, that there are families with three siblings, four siblings, even twins, both having a diagnosis or only one of the identical twin having it. So can it be passed down or is it inherited? As far as we know right now it appears that it is.
Rei Reyes: Can autism get better ? I believe Sevan had covered this. The diagnosis of ASD is a lifelong, however, with proper services, the symptoms that define the diagnosis can get better. You know, like better communication skills, solve problem skills, regulating behaviors. Among the few behaviors and difficulties that are living with autism can go through in life. Can autism be diagnosed in adults? I have not come across this, but it may be possible. We do have some children, older children that are just receiving services at age 10 or so only because perhaps the symptoms back then when when they were younger were not as pronounced or not affecting their lives. But as the demands over the years increased, you know the symptoms have more effect on their lives. Dr Lubbers?
John Lubbers: Yeah, as far as we know, two guys, I think that we know that, it can be diagnosed as an adult typically caught earlier because of the impact it has on an individual. But we’ve heard a lot of cases where we have an adult 30, 35 years old and they’ve had some difficulties all their lives. These are typically individuals that would be described as higher functioning or more skilled and they’ve had difficulties all their lives with relationships, with jobs, with feeling happy and present in their lives where they need to be. And then as a 30 35 year old, 40 year old or something, we’ll go and find out that they believe they carry a diagnosis of Autism Spectrum Disorder and that kind of helps them to understand why they’ve had some challenges. So we’ve seen situations like that where it can be assessed and diagnosed and sometimes undetected in the majority of the cases though because of its impact and the significance that it has for an individual, it’s usually diagnosed earlier in life.
Rei Reyes: Yes. The next question we have, can autism be acquired? Currently, e have no reason to believe that you can just acquire, again, there is the research out there of trying to figure out causes and as of today, there is no known cause so we don’t know really if you can just get it.
John Lubbers: In the word acquired, makes me kind of think like a
Rei Reyes: A cold. Yes. Yeah, so you can’t just really pick it up.
John Lubbers: Yeah, and I guess if we’re to assume that’s the nature of the question and maybe they’re concerned by the person that’s out there asking this is like, Hey, if I’m around somebody with autism, is there a possibility that I could get it or my baby could get it or my children or what have you. I think that the science right now says no, it’s not something that can be acquired or transferred from one person to another outside of genetics.
Rei Reyes: Yes.
Manjit Sidhu: Safe to say that autism is not contagious.
John Lubbers: Yes, exactly. Yeah.
Rei Reyes: I’m surprised that question did not show up on Google, but yes, it’s not. An interesting question, next one, can autism be detected in the room? When I tried to answer this question, my first answer was no then I started doing some reading again on the internet and apparently there is a group of scientists out there that is somehow finding some links between, I guess with whatever testing you’re doing. But again, this is a very new science and we don’t know if it’s really doing what it’s supposed to be doing. So again, back to the question, can it be detected? Some people claim that there is.
John Lubbers: Yeah. And I think to you guys, I think this really speaks to the this line of research that’s out there. You know that this genetics and the human genome and that area of research and science and medicine where they’re really looking at genetic connections. And I think in the area of genes in Autism Spectrum Disorders that geneticists that are investigating this area are enthusiastic and S in and are positive in the sense that they think they will be able to identify a gene or some genes or some actions of a gene or a group of genes that are then strong predictors for Autism Spectrum Disorders. So if you kind of play this out a little bit to its end, you could imagine that if we could test the genes of a an unborn baby and we had, assuming that we’ve already kind of, the geneticists have already kind of figured out a way of identifying it and individuals that have been born already that maybe if they’ve dialed that in that maybe they would be able to identify it in an under unborn baby at some point. So it’s possible it is, yes, science may go there. We’re not there yet, but I think it’s an interesting area for us.
Rei Reyes: The next question, can autism get worse with stress? Interesting question. The symptoms, difficulties that are presented by an individual can be affected by stressful situation. For example, given a novel environment like a classroom or a birthday party, a child living with autism may start performing these repetitive behaviors. It’s very common. I work in a school setting and I do see these repetitive behaviors happening, when they just first get to the new classroom. So this is just from my own experience I would like to say there may be.
John Lubbers: Yeah I think too, I think this is a logical, and I would answer as well Rei, yes. If you looked at what is a stressor. So when we see our individuals with Autism Spectrum Disorder and they are sometimes taken out of their routines, if routine is interrupted and this particular individual is very routine govern, we could interpret that change in routine as a stressor. And then when we see some times that routines are interrupted with individuals that are routine govern, they react in a manner that leads us to believe that they don’t like it. So their self stimulatory behavior can increase. We’ve all worked with somebody who when some changes happen in their environment, they start to stem more hand flap, more bodies, more steps and or a variety of different things. Even protests. Things that we would say as protest, so screaming. Sometimes we’ve seen self injurious behavior, we’ve seen individuals who will hit themselves when things become stressful, noise becomes too loud. That can be a stressor. So in that sense, like you said Rei, stress could increase the symptoms of autism and the behaviors that are individuals with Autism Spectrum Disorders engage in. However, it probably doesn’t change the root cause of it. That’s probably somewhat permanent and immutable.
Rei Reyes: Similarly, the next question says, can autism cause depression? Perhaps. One thing I’ve noticed in our practice with working with insurance companies, a few of them are actually requiring depression screenings at age 12 or 13 please correct me if I’m wrong, so it is probably, it may be more of a comorbid. Yes, John?
John Lubbers: I was going to just add to this too, we do see some statistics about depression being a little bit more common in individuals with Autism Spectrum Disorder. And I think what, what’s implied there a little bit is that could contribute to the depression is the individual’s awareness, the person’s awareness of their situation and the difficulties that it presents. So if I have Autism Spectrum Disorder and I have difficulty having friends or maintaining friends or keeping friends and I’m aware of that and I realize, Oh my gosh, I can’t have many friends or I can’t seem to keep friends for very long, that could definitely be something that would contribute to me being depressed either momentarily or more permanent. So you could definitely see that those two being kind of interrelated a little bit. Those two comorbid or those co-occurring problems.
Rei Reyes: Yes. Next question is more of a statement actually. It says WHO autism statistics. So like Sevan had mentioned earlier the current number is one out of 59 is and that information was from the CDC, ADDM, autism and Developmental Disabilities Monitoring Network.
John Lubbers: So I’m sorry to interject. I just had an epiphany guys. We were looking at this written out WHO tourism’s statistics. You know, it just occurred to me, I think this really was a question. It’s W H O standing for.
Rei Reyes: Oh. World Health Organization.
Rei Reyes: Is it or is that, yes, if it is, but it never occurred to me it is wordy. It was worded like that.
John Lubbers: Yeah. So again, ladies and gentlemen in the audience, I think this is just the nature of a question. Yeah. A Google search where it’s WHO written out like a word. All our preparation time we were assuming that was just a statement who autism statistics, but now that we’re saying it out loud again for the 6th time, it could possibly be World Health Organization in which case I know Sevan you talked a little bit about the incidence and prevalence of autism and some of the demographic descriptors, things of that nature. I think the takeaway from this is that it affects all races and affects all economic categories. It seems to be equally prevalent around the world, although there may be some identification differences from some countries to others depending on the medical system in place there. The records, the identification systems and those types of things. There may be a difference from country A to country B. We do see a little differences in terms of the incidents between males and females, so there is a little bit there, but it’s pretty universal across almost all people.
Rei Reyes: True that. The next question or statement, Autism, who does it affect? I think this time around WHO is just who, right? Yeah. To add it to the information, we have said already, it is 4x more common in boys. Another number 1 out of 6 U.S. Children live with a developmental disability including ASD. This was back in 2006-2008. This is very interesting, more common among older parents and tend to occur more often among people living with certain chromosomal or genetic disorders, which we have mentioned already. Those should be like down syndrome, fragile X and Tuberous sclerosis, not Tuberculosis. Just want to clarify that sound very similar. Thank you. Which parent carries autism gene? Oh, this is a very touchy topic. I can just imagine mom and dad pointing fingers. As far as we know right now, and this is quoting the CDC, we cannot say, but like I said earlier, research suggests that there may be a link between ASD and age of parents that is for parents 40 and older. They’re not seeing which it’s where it’s coming from. Mom or dad. No it’s not. It’s just the age. That was very interesting when I came across that information. So it’s been talked about before, but until recently, at least we now have some solid info and that.
John Lubbers: We know now we’re pretty confident in terms of determining that. We kind of know in the science that the gender or the sex of the baby is typically determined by the parent. Now does one parent carry the gene for Autism Spectrum Disorder? I don’t know. That would obviously imply that we knew what the gene was. We just don’t know what the gene or genes are or the gene expression. So until we know those preliminary or precursory questions, we’re really not going to know whether it is a parent, a mom, or a dad or what have you. Or an interaction between both. But really that was an interesting question as well.
Rei Reyes: My last question for my segment. Which is worse, Autism or Asperger’s? No, per the DSM5 we just now have a diagnosis of ASD, which now includes what was previously known as Asperger’s. So which one is worse? That question doesn’t really apply at least from a clinical perspective because we will look at each child’s needs.
John Lubbers: You know now the answer to this question is there really Asperger’s doesn’t exist anymore. It’s now included with Autism Spectrum Disorders as one of the disorders. And it it’s typically perceived as towards the higher end. But back in the day before DSM5 and that all inclusive diagnostic label Aspergers used to be kind of perceived as sort of milder autism. So typically what was the characteristics of somebody with Asperger’s was sometimes they had difficulties with the subtleties of language, like for example, understanding sarcasm or understanding processing nonverbal community and facial expressions concurrently with what’s being spoken or said and processing both of those bits of information like we do every time we talk to each other. So, and then of course, you know, socially and behaviorally those were typically some things that occurred with individuals with Asperger’s. But now that we have the diagnostic label of Autism Spectrum Disorder, Asperger’s is sort of something that we don’t really even discuss anymore because it’s included with ASD.
Manjit Sidhu: All right folks. Moving onto the next set of questions. My first question was interesting, which chromosomes cause autism? So like we’ve been discussing already, no one knows for sure what causes autism at this point, scientists believe that the underlying cause is genetics. However, a group of researchers at the University of California from Irvine found that certain sections of chromosome 15 was missing in a seven year old boy who had autism. This was the first time that a specific genetic problem was actually found in a person with autism. The scientists found that the boy was missing about a thousand pieces of the genetic sequences on chromosome 15 this means that some of the instructions for building the body or the mind are missing without these instructions. The body or mind may not be built correctly. There was also a network of scientists known as collaborative programs of excellence and autism and they’ve also linked chromosome seven where genes for other language disorders are known to exist as well.
Manjit Sidhu: Moving on, what does autism mean? Autism is a developmental disability that can cause significant social communication and behavioral challenges. It is seen early in life and symptoms can vary from mild to severe. My next question, what autism looks like? Autism can different in different people. It’s a developmental disability that affects how you communicate, how we behave and how you interact with others. These symptoms can range from being very mild or very severe. A child may have poor eye contact, not respond to their name. Language may be scripted from a movie or a TV or even from earlier interactions. The child may lack empathy. They may not be able to recognize other person’s emotions. The child may have challenges in participating in pretend play. They may be rigid in their daily routines. Changes in routine can be challenging. There can also be some sensory challenges such as either over or under sensitive to temperature, texture or smell or sound.
Manjit Sidhu: Children with autism may exhibit behavioral challenges such as tantrums, aggressive behavior is noncompliance and or even self injurious behaviors. Next question, what autism means to me. So autism means different things to different people. To me it means helping others understand and accept people with autism through information and education. Next question. What autism do I have? So in the DSM5 there is just one Autism Spectrum Disorder. The center of disease control states that everyone with an autism diagnosis, no matter what his or her symptoms are, they are now lumped together in a single diagnosis. So that’s just what we werediscussing earlier as well. What Autism Spectrum Disorder means. Autism spectrum disorder is a neurological and developmental disorder that begins early in childhood. It affects how people act and interact with others, how they communicate and how they learn. ASD is a collection of similar symptoms that differ in severity
John Lubbers: An interesting thing to maybe to elaborate on for us is that it is a Spectrum Disorder and what that means to us is that there’s a range so it can range from very impacted to less impacted and it can range from impact in certain areas to impact in different areas. So it can affect, like you said at the start, it can affect different individuals differently and we can all experience it differently.
Manjit Sidhu: Right. Moving on, what are autism symptoms. So there are a group of classic symptoms that are associated with autism. Individuals have difficulty with social interactions, communication skills. They ha they may have trouble making eye contact, repetition of words or actions, compulsive or in compulsive behaviors. So, but like we just said, it’s important to keep in mind that symptoms can look different with different people, what autism is not. So autism is not a lack of intelligence. That difficulty with social and communication issues may make it appear that someone with autism is unintelligent. However, people on the spectrum very with intelligence, just like those that are not on the spectrum from however language skills can make it harder to discover to discover someone’s intelligence. There are multiple types of intelligence and it’s harder to discover when there’s those language issues there.
John Lubbers: Just to elaborate on that a little bit, a lot of times our families and encounter this or our individuals with Autism Spectrum Disorders encounter this in school systems and what is customary practice of schools is to be assessed by a school psychologist. Common practice with school psychologist is to conduct sometimes and intellectual assessment and it can be both verbal and nonverbal assessments using verbal and nonverbal assessment tools. And what we’ve seen over the years that even with non verbal assessments with our individuals with Autism Spectrum Disorders is it can be very difficult to test them. And to get accurate and valid responses and results. And so a lot of times we’ve seen, years ago, more so years ago, less so nowadays as we become more familiar with ASD and more trained and more proficient with it. But we used to see where like you said, sometimes people would be diagnosed as also having an intellectual disability when that may or may not really have been the case or maybe just you know, some invalid results. So I think that’s something for us to be aware of as well as families and clinicians working with is that sometimes that there may be a belief of intellectual disability, but, and we probably should look a little closer at that just to determine that is valid.
Manjit Sidhu: Right, right. Autism is also not obsessive compulsive disorder. There are many similarities between the two disorders, but they’re very different from one another. The causes of the repetitive behaviors for both of the disorders are different. Those with autism may engage in repetitive behavior or rituals. They may be more motivated by a need to self stimulate. Whereas those with OCD engage in these behaviors more because of anxious as temps to self-sooth. So very different from one another. The next question, what autism looks like in adults? Adults with autism can have difficulty regulating emotions, trouble with interpreting body language, social cues, or even facial expressions. It can be difficult to interpret what others are thinking or feeling. Starting conversations or even keeping up with one can be difficult for some adults. What autism gave mean. So this is like my personal answer. Being in the field of autism, it has given me patience and it has given me knowledge to educate others about it. It has allowed me to teach people about what it is. It’s allowed me to help those on the spectrum to live their life to the fullest of their abilities. What does autism look like in toddlers? Autism symptoms can vary from individual to individual. However, some of the first signs in a toddler can consist of but not be limited to our lack of eye contact, not responding to their name, not showing affection, limited communication and or meaningful gestures and speech delays. They may not be able to point at objects of interest, not be able to engage in pretend play or want to be alone. Moving on, why autism happens? Several factors may influence the development of autism. There is no one cause for autism. Research suggests that autism develops from a combination of genetic and non-genetics or environmental influences, so that’s that.
Manjit Sidhu: Why autism is a gift? A child with autism can be unique and unlike anyone we know, autism gives us the chance to be something more than just ordinary. The strengths of autism could certainly be seen as a gift. Recognizing behavioral strengths of children with ASD, as important as it is those strengths that can be expanded onto increasing adoptive behavior. Next question, why autism is good? Autism isn’t all about challenges. It’s also about the gift of being able to see and interpret the world’s differently. Different does not have to be lesser or be limited. Those that are diagnosed with ASD can actually provide a unique perspective and new ways of looking at things.
John Lubbers: I think that’s an important discussion. I think it’s something that maybe we’re in the, not just the field but just in this realm of individuals with Autism Spectrum Disorder with families that have individuals in their families and with the treatment professionals that we’re just starting to explore that there can be benefits to Autism Spectrum Disorder and we see that, we see that sometimes in really refined skill sets and certain areas, niche areas like we’ve heard stories about folks that are really good at writing code, computer code that have autism spectrum disorder and an acceptance of ASD and an awareness of that and an exploration of things to do for individuals has sometimes resulted in an individual finding out, Oh my gosh, I write Python code on my computer exceptionally or I’m an amazing music producer because of my heightened focus areas or somebody is exceptional as an engineer. That it has been said sometimes anecdotally that a lot of times in the hard sciences and the engineering and on universities that there are a high incidence of individuals with ASD, what used to be called Asperger’s, people that are really brilliant in an area. So I think that this new perspective or new earth perspective on autism as having some benefits and helpful as well.
Manjit Sidhu: Right. Well said, John. Kind of ties into my next question, how autism can be misrepresented in the media? So when people hear the word autism or autistic, sometimes they think of Dustin Hoffman’s character in the famous movie Rain Man, right. While his role in the film is probably the most famous portrayal of an autistic character, it is most certainly not the most accurate. The media seems to limit in many aspects of ASD that they are portraying. The depiction of autism doesn’t reflect reality for the majority of people on the spectrum. The media has been focusing on autistic savant, which is actually quite rare. Only 10% of people with autism are estimated to have those abilities. This stereotype has been sticking around since rain man from 1988 appearing in films and television shows to spread the misconception of what autism actually looks like despite its varying degrees of impairments.
John Lubbers: And it’s a kind of a double edged sword, the movie in the sense that it had kind of opened our eyes to autism.
Manjit Sidhu: Right. Definitely.
John Lubbers: It became the defining example of what autism is and we know, those of us that work in the field, we know that it expresses itself quite a bit different.
Manjit Sidhu: Exactly right. Last question. How autism presents in females? So one in 68 kids in the U.S. Have an Autism Spectrum Disorder. It’s 4x more common in boys than in girls. So because of this, scientists have focused their research more on boys leaving us with very little information how autism may present differently in girls than in boys. For now, what we do know is that many girls with ASD exhibit less obvious signs compared to boys.
John Lubbers: Interesting. And I know in the field years ago, this was just very casual observation of people that we’ve seen kind of disprove. They used to believe when autism did manifest itself and and a girl female, that it usually was a little more severe. However, I’m hearing you say that more recently we’re thinking that it’s even less common and maybe you know it doesn’t have a severity comment but maybe it’s less. The ways that it manifests itself with girls is a little different. It’s interesting. Imagine your questions were really compelling and the things that you address were really compelling and interesting, really provocative in terms of perspectives and answers and kind of challenged us a little bit. I think as professionals and in people in this realm of the autism universe to really look at things a little differently. If I can say the questions and comments, but both questions and comments that I’m going to address may have already been addressed partially or some other form by you Manjit, by you Sevan or by you Rei. So there could be redundant but they’re slightly different variations on what was asked in the search engines out there and I just want to elaborate on that again or just state that again, that there are going to be some things that are redundant that will say twice but that’s only because it was asked in a few different ways. So with that, let me go into the questions that I’ll be addressing particularly.
John Lubbers: The first one really is not a question but more a statement. I’ll change it over into a question, but it’s how autism affects development. So if we were to convert that over into a question, how does autism affect development? That’s a big question and I’ll try to tackle the answer from that in a few different ways. At times, individuals with Autism Spectrum Disorders have diminished physical skills, so they might be hypertonic or have low fine motor or gross motor skills.
John Lubbers: However, not all individuals with Autism Spectrum Disorders experienced this. In terms of cognitive development and cognitive skills, we can’t say that autism directly inhibits intellectual development, but it can be a correlate or something that is associated with. They can make it difficult for our individuals with Autism Spectrum Disorder to learn in typical educational environments and with typical educational approaches. So that can be a complication. What we can say fairly comfortable is that some individuals have intellectual disabilities as well as autism. So like we talked earlier about being able to identify and assess intelligence when we are successful in doing that validly. We do find that occasionally we do have concurrent intellectual disabilities and autism though it’s not that common. Okay. Furthermore, we can say that learning styles for individuals with Autism Spectrum Disorders might be quite a bit different from individuals without autism spectrum disorders.
John Lubbers: They may benefit or learn best from approaches to teaching that are evidence-based, that address breaking things down into simple components or simple steps that may rely on some visual materials to teach concepts. So it affects development. Autism affects development in a variety of different ways. The second area that the public was asking about is how autism affects learning. And I talked a little bit about this just a second ago, but a significant percentage of individuals with autism spectrum disorders learn differently from others. Okay. So some learn better when learning goals are broken up into small steps. Like I mentioned before, some learn better when educational materials are presented to them visually or auditorily or using some different technology. Sometimes we have individuals with autism spectrum disorders that learn or are more receptive to educational materials when they’re presented on a tablet. So we have a variety of like maybe methodologies or ways to approach that.
John Lubbers: The next comment or question that we’re going to talk about is a big discussion and maybe even we should break this out into a podcast just on this topic matter. And the statement question is how autism affects siblings. And it’s been this study of doctoral dissertations. There’s some public published research on this and there’s quite a few things that we probably should kind of address. But given that we’ll probably break this out into its own topic, let me just be brief about it. So it can affect siblings in many ways, ranging from sort of a net positive effect, meaning that the overall effects on a sibling are positive to net negative effects in the sense that the social emotional development of an individual, of a sibling, of an individual with autism spectrum disorder could be different or deficient or it could kind of affect a sibling in both ways at the same time, it could be both positive and negative.
John Lubbers: So pros and cons, the effects can range the positive and the positive effects can range from teaching siblings, empathy patients and getting some firsthand experience on how to advocate for their brother or sister in terms of what their needs are for autism, explaining it and teaching the friends of the sibling about the sibling with Autism Spectrum Disorders. What I mean by that is imagine a individual with Autism Spectrum Disorder that’s in elementary school. And then imagine we have the sibling who’s in middle school and the the sibling has their middle school friends over the house or over the apartment for a friend visit. And so it can be an opportunity for the sibling to explain. And this is my younger brother, my younger sister, they have Autism Spectrum Disorder. So they may act in this way or that way. However, it’s not a problem for us. So hopefully it’s not a problem for you. So it can be, it can affect siblings in a variety of ways. We’ve heard also at times too that sometimes the supports in the needs of the individual with Autism Spectrum Disorder can be so demanding that it consumes the majority of the time of the parent or parents and so that they have just less time to be able to spend with the neuro-typical sibling. So it’s a big answer. A big question, one that’s very important, one that’s been researched and one that we’ll likely do a separate podcast focus. Just on that similar kind of comment or topic is how does autism affect families? And it’s also a big question. Probably we would address that in the same podcast is the siblings, but it can affect families socially and emotionally just like it can exact peers or siblings make an effect.
Rei Reyes: The family unit, how you get along, how the family interacts and how they get along together. You can imagine a family that has to live their lives at all moments knowing or fearing that their son or daughter or brother or sister may injure themselves accidentally because of their safety skills. Awareness is a little bit deficient or inhibited. They may walk into a street while you’re out in the community. They may burn themselves on the stove. They may engage in a variety of things that may put their wellbeing at risk, and so living with that constant stress or that constant thought can definitely take its toll and have an effect on a family and family members. Additionally, it strains typically marriages. The divorce rate within couples, family members with autism spectrum disorder is much higher than it is and the families without an individual with Autism Spectrum Disorder.
Rei Reyes: It’s very common that we see the stressors of that. Often times we’ve seen families where one parent has to quit working to be able to attend to all of the needs of the individuals with Autism Spectrum Disorders. So it can have quite an effect on a marriage or a co-parenting relationship or a partnership relationship where two people are sharing parenting responsibilities may can definitely affect that. It can also affect the finances. So financially there’s quite a bit to kind of to consider here with co-payments and co-insurances and deductibles and uncovered services that are necessary and special schools. These all can require financial commitment and be a financial burden to families so there can be quite a financial impact as well. So that needs to be planned and we’re seeing a little bit more now more recently that families are, as this industry starts to kind of develop a little bit more, really kind of becoming concerned with, well, what’s going to happen with my son or daughter with Autism Spectrum Disorders after I’m gone?
John Lubbers: A parent that has a typically developing individual child would probably assume that they will make their way in life without them. You know when they, when the parent passes away, the child will move on and live their life and repeat the cycle of Parenthood and child rearing et cetera. Working and everything that we do. A parent with a child with Autism Spectrum Disorder may not well may have more questions with how that will work. Can that family rely on government or support outside of them to be able to continue the support of that individual, especially if they’re predicting that that individual may need support throughout their lifespan. So that is another big topic and you know one that we’ll cover in that podcast. The next area that I think that was asked and is of interest to everybody is how autism works. The short answer to that is we just don’t really know.
Rei Reyes: We don’t have the science yet of how it works like Manjit, Rei and Sevan said earlier, we believe strongly that is a neurological in cause there has been but we don’t know exactly what it is. Scientists are moving more in that direction. We’ll see hopefully that sometime in the near future we can arrive at determining with some confidence what it is. We also believe that there might be some interaction between neurology or genetics and the environment. Like we discussed earlier when we talked about, there’s been some school of thought that it could have to do with the interaction between shots and maybe a predisposition for autism spectrum disorders. Genes that’s very controversial in most of the research right now says no, that doesn’t exist in most of the medical practitioners are really urging us to get our immunizations so that we don’t create other problems as a result.
John Lubbers: Like it was mentioned earlier, there’s some research among pollution. There’s some belief that maybe it has some interaction between pollution in genetics, so we just don’t know yet really at this point. You know what exactly it is, what exactly is going on. There’s also two kinds of developmental pathways for individuals with Autism Spectrum Disorders. One that is where parents relate to how it worked with their son or daughter was they knew basically from birth forward that there was something different or something unique about their son or daughter. Contrast that with the parents who will recount to us that no they were fine developmentally they met all the milestones and then right around age two, 24 months give or take four months, 20 to 28 months, there was a big change and there was some big change in the development.
John Lubbers: So, so we’re still not sure the short answer that is still, we’re not sure how it works necessarily. There’s definitely, we need more research for sure. How autism affects communication? Communication and language is one of those areas identified by the diagnostic and statistical manual and the ICD in terms of a diagnostic criteria for autism and autism can affect communication in many ways. For example, first it’s believed that ASD can reduce the motivation that individuals have to communicate. And what’s meant by that is we’re folks have described their loved one or their friend or their neighbor with autism is being disinterested in wanting to engage with them in preferring to be by themselves doing something that’s solitary. So it could just, maybe there’s a reduction in the motivation. I’m just not motivated to talk to you. I would rather just be by myself. So it’s possible that that’s the case.
John Lubbers: Secondarily, there is just the language production both spoken and non spoken language can be inhibited. There’s sometimes discussion of a proxy and the ability to to formulate words and the connections between brain and and mouth and that sort of stuff. So there can be a lot of ways that autism affects communication and it’s a big area of intervention that practitioners working with individuals with autism spectrum disorder focus their practice on is facilitating communication and addressing it to reduce behaviors to increase independence. For most of our individuals, most of our individuals contend with communication issues, how autism affects daily life. Autism spectrum disorders affect daily life in a variety of ways. Probably as many as we have individuals with autism. What that means is it’s pretty individualized. So it can range from very minor changes. We can see these changes is very minor and two more significant.
John Lubbers: For example, minor changes can be things like preferring routine, preferring a certain path to the grocery store, preferring dishes lined up in a certain way or things put in the refrigerator in a certain way or socks, wearing a favorite pair of socks or things like that. So minor things to more major things where it’s the individual is very disinterested in others, prefers to be by themselves and could potentially engage in self injurious behavior as a way to escape or avoid contact with other people. So the effects on daily life can be quite a bit different. Probably individualized to the individual themselves and can range from mild to pretty severe effects. How, we talked about this a little earlier, but let’s talk about it some more because it was a searched up and address slightly differently. And it’s how autism affects adults. So Autism Spectrum Disorders, ASD affect adults in similar ways to how it affects children or or young people.
John Lubbers: In short, it would affect the individual in the same ways that had been identified in the DSM. And the ICD that is, there’s language, typically language deficits. There are typically behavioral excesses. There are typically behavioral deficits, skills, deficits. Sometimes there is a disinterest in social emotional connections with people. And so that is typically how it affects adults as well. Like we discussed earlier in the podcasts and earlier in the questions it can also be more subtle. And so when we see individuals that are adults that are diagnosed as adults, they could have contacted or been affected by odd ASD by having difficulties with interpersonal relationships, by having difficulties with employment and continuous employment and successful employment. So it can be a variety of different ways, but they’re usually typically similar to the way it affects individuals or children, two non adults.
John Lubbers: However, because life is different sometimes for adults, the things that they encounter might be a little different. The next comment question I think is fantastic and I think Manjit or Sevan and Rei addressed it earlier, but it is a statement how autism freed me to be myself. And this would be in maybe another podcast for us. We’ll probably do a specific one on this because I think this is an interesting topic for us to discuss as a field of practitioners. In the field, the evolution or the development of the field, we first identified, Oh, we found out about this thing called autism. Now let’s learn about it. Let’s identify, let’s describe it, let’s figure out how to assess it. Let’s figure out how to treat it. And as we’ve evolved and developed in the field, now we’re starting to look at it from the perspective of, Hey, it’s not always a deficit or a problem.
John Lubbers: There can be, it can be both a problem and a deficit and an advantage or maybe in some cases it’s only advantage. So it’s a little bit of a different perspective and a different way of looking at autism spectrum disorders. And what I assume is the individuals that are looking for this on the internet are maybe accepting that they have autism and are looking for ways to where other people have encountered, Oh my gosh, this is I’ve, I’ve accepted and I’ve identified these ways and now my life is different because I’ve come to these realizations, so I think that’s an important topic for us to really discuss in greater detail among ourselves as professionals and of course, like I said in a podcast how autism feels. This is a really interesting question and I think the short answer to that is it’s going to vary from person to person and it’s going to be very individualized.
John Lubbers: What I think we should do is really this, the way to answer this would be to get people with Autism Spectrum Disorders, to talk about it, to listen to them, to listen to their stories and to, to just get their impressions on how they felt. For example, temple Grandin has written a book and it’s very insightful and quite a few people now have written short things and longer written formats, books that talk about how their life has been with Autism Spectrum Disorders. So it’s complex, it can be difficult at times and it can be advantageous and it can be neutral. But I think it’s interesting, you know, to really look at that perspective as well. The next one is a little more focused question and it’s autism and dyslexia related. And the short answer to that is we don’t believe so at this point in the world in the science and that is because we really don’t know exactly what causes autism and dyslexia.
John Lubbers: Dyslexia now there are some commonalities. Autism is typically referred to as a learning disorder or something that affects learning. Dyslexia is also a learning disorder in schools. They refer to it as a specific learning disability or a specific learning disorder. So there are similarities and, but they’re right now in the diagnostic world, we think of them as different and possibly likely having different root causes. Okay. Our autism and ASD? The same thing. Short answer to that is yes. Yes, they are autism spectrum. ASD stands for Autism Spectrum Disorder. Okay. And that is the more contemporary diagnostic label for the spectrum of disorders that we referred to as autism. Autism is in our common language. We use it as a, we like to shorten things and use things for efficiency in language in autism, they refer to one the same, so they’re synonymous.
Rei Reyes: We typically use autism, but autism, Autism Spectrum Disorder and ASD are all the same thing. Okay. Next one. Similar type of comment question is our autism and Asperger’s related, our autism and Asperger’s related. Well, earlier in the podcast we talked about what Asperger’s was, the new definition of Autism Spectrum Disorders and the fact that Asperger’s is now subsumed or included in autism spectrum disorders. In the past we used to keep them, we described them as separate. Some people like to do that. Some people thought it was controversial, but the state of the science now is that they’re best described as part of the same spectrum disorder. Okay. Are autism rates increasing? The short answer to that is yes. As we see new statistics come out for, from the world health organization, from the CDC, the centers for disease control in our population health entities. As we see those statistics come out year after year, we see that number gets higher and higher the incidence and the prevalence
John Lubbers: Now, the real question here is why? Why are those numbers getting higher? That questions asked to me an awful lot. Why is that, John, why do you think that’s the case? Well, I usually answer that in this manner and it’s probably that I would get asked this question most often, a few years ago, so this is maybe when we knew a little bit less than we do at present, but I typically answered the question is, well, we’re probably learning to identify it more so we’re getting better at that or diagnosticians are now very familiar with it. We’re getting better at the diagnostic assessments themselves, the tools. We’ve gotten better tools, so we’re better at getting it. We’re more aware of it as a health population and as a population. Just as you know, general society, we’re more aware of it and so we’re probably identifying it more often.
John Lubbers: There are other potential reasons that this could be in the one of course the obvious one is well are we, are there causes of it out there in the environment that we’ve not identified? Well we’re not sure about that. It’s possible, but we just don’t know. It’s just so speculative right now that it would be maybe a little irresponsible really to start to speculate on that. It would extend from the science that we try to keep our, our practice rooted in and take us more into speculation in theory hypothesis. So the short answer, like I said, is yes, it is increasing. Last question that I have that I want to do address for us is our autism and Tourette’s syndrome related. And the short answer to that is no, not as far as we know, but like, like dyslexia, Tourette’s has some similarities in terms of how it manifests itself at times.
John Lubbers: So Tourette’s is typically, we have ticks, whether are referred to as ticks. They can be movements or vocalizations or blinks or any of a variety of different responses that are typically involuntary. And those ticks can be similar to the things that we sometimes see as symptoms in individuals with autism spectrum disorder. So or somebody on standing on the outside, they can look at an individual with Tourette’s and they can look at an individual with autism. They’re doing similar things and they may wonder if they’re related, but as far as we know in terms of our diagnostic science and our causal science, we don’t believe they do at this point. So that’s, those are my questions ladies and gentlemen. And I just wanted to just remind everyone again in the listening audience that these were not questions that we brought up. These were questions that people out in the world brought up and were searching out on the internet and we decided to address them.
Rei Reyes: We just decided to address the top 50 or a hundred questions regardless of what they talked about. Once in a while we would throw out a topic that was totally unrelated that we found was just totally unrelated to the area of autism, but these are the things that you’re wanting to know you, meaning you, the general public, are wanting to know you’re seeking answers for these. So we decided we wanted to address these, so I don’t know Manjit Sevan Rei, if you guys had any closing thoughts on your questions or anything else, if you do, fire away.
Sevan Celikian: Thank you to everyone that listened, we hope you found this helpful. If there are other questions that we didn’t answer here that you would like to have answered, please feel free to reach out to us, communicate with us, visit our website and stay tuned for future episodes.
John Lubbers: Thank you guys.
Manjit Sidhu: Thank you for listening.
Rei Reyes: Thank you.