What the AUTISM?! – Détails, épisodes et analyse

Welcome back to season 2 of “what the AUTISM?!” This podcast is intended for listeners who are interested in learning and better understanding the autism diagnosis. If you are a new listener to our podcast, welcome to our community! Whether you are a parent, a health care provider, a teacher, a fellow community member, or an aspiring behavior analyst, this podcast is meant to create an ongoing discussion with you the listeners, to better understand all the mysteries of this autism diagnosis and be a resource to one another as we each partake in this journey together. 

Today’s episode is on the topic of transitioning to adulthood for individuals that are diagnosed with autism. Those that follow autism research will have noticed that much of the research conducted focuses primarily on birth to childhood, but there’s a growing push for research to expand to adulthood and beyond for this specific population. Understanding life course trajectories can help us identify how different outcomes stem from different etiologies and different prevention strategies that would be most appropriate for different subgroups of individuals that are impacted by the autism diagnosis in various ways. Basically, what this means is that autism is a disorder that encompasses a wide spectrum, and in order for us to better understand the appropriate treatment and care for each individual, we need to conduct further research that focuses on more than just the infancy and childhood years. 

A resource I want to point our listeners to is the National Autism Indicators Report. It’s a helpful guide put together by Drexel University to present current research findings and their implications. The specific report I want to point you towards is the report from 2015 that focuses on transitioning individuals into young adulthood. Young adults with autism have a difficult time post high school for all possible outcomes, whether it is work, continuing education, independent living, socializing and participating in the community, and staying physically healthy and safe. To further complicate these difficulties, many of these individuals face adulthood by first stepping off a services cliff. This is a common analogy utilized within the autism community to refer to the transition that individuals diagnosed with ASD go through once they graduate high school. They no longer qualify for the services they’ve had access to since infancy, and these transitions are some of the hardest obstacles that an individual diagnosed with autism and their family have to experience. The National Longitudinal Transition Study conducted in 2012 found that over ⅓ of teens diagnosed with ASD could not navigate to various locations outside the home, or were not allowed to do so. The report also identified that most teens with ASD could perform adaptive tasks, such as feeding and dressing, very well, but some had trouble using the telephone or looking up phone numbers or counting basic change. It’s also important to highlight in terms of social opportunities, individuals with ASD were found to engage in fewer social and recreational activities in middle and high school compared to their peers without an ASD diagnosis. Students with ASD were also found to have decreased levels of participation in sports, clubs, and other lessons/activities, and community service.

Over half of young adults with autism received no vocational or life skills services during their early 20s. It’s also important to note that nearly half of the youth on the autism spectrum were victims of bullying during high school. Over one-quarter of adolescents engaged in some type of wandering behavior in which they impulsively left a supervised situation, increasing their risk of becoming lost and going missing.  Some of these statistics highlight the wide range of needs and accommodations that individuals with ASD will be needing; however, the health care system doesn’t have the resources...

Welcome back to season 2 of “what the AUTISM?!” This podcast is intended for listeners who are interested in learning and better understanding the autism diagnosis. If you are a new listener to our podcast, welcome to our community! Whether you are a parent, a health care provider, a teacher, a fellow community member, or an aspiring behavior analyst, this podcast is meant to create an ongoing discussion with you the listeners, to better understand all the mysteries to this autism diagnosis and be a resource to one another as we each partake in this journey together. 

Since posting my very first episode, we’ve grown such a big community here, so I would like to start off this season with a quick recap of who I am, what is autism, and what our next steps are. My name is Amanda. I’m a Board Certified Behavior Analyst (BCBA) and I had been working with clients with Autism for about 8 years. 

Straight out of my undergrad, I started off as a behavior therapist at a large ABA agency. Fast forward a few years, I got a masters degree in ABA and my BCBA license in 2016 and practiced as a clinician and a clinical manager leading a team of about 50 staff members and over 40 families and patients. I’m currently a graduate student at Johns Hopkins Bloomberg School of Public Health researching and learning more about this autism diagnosis.

Let me clarify that although, I am a BCBA and an aspiring researcher, the intent of this podcast is to share my experiences and my knowledge to help my listeners better understand the Autism diagnosis and where the current research stands, but please note that this is not a means of medical or psychological diagnoses nor recommendations. 

To open up our first episode, let’s talk about the updated prevalence data that was published recently in December 2021. The prevalence of Autism Spectrum Disorder in the US is 1 in 44.

But where do these numbers and data exactly come from? If you’ve been following the reporting of new prevalence data, there’s an updated prevalence report for ASD every 2 years. This data is published by CDC’s ADDM Network, which stands for Autism and Developmental Disabilities Monitoring Network. The ADDM Network conducts active surveillance of ASD. When the ADDM Network publishes new prevalence data, this is based on the data that is collected from previous years. The 1 in 44 prevalence data is based on the 2018 data, so we wouldn’t know about the current 2021/2022 data till a later date, but one thing we know for sure is that the prevalence of ASD is ongoingly increasing. We started with 1 in 150 back in the 2000 surveillance year. The ongoing question is, why is the prevalence of autism increasing so rapidly? Is it the environment? Is it the food? Is it the changes to the diagnostic criteria? Great question…we don’t know! There are still so many unknowns when it comes to autism but over the years researchers have uncovered so many variables and risk factors when it comes to autism. This season, we’ll be specifically diving into some key findings over the course of the last decade. Let’s break down what each of these findings implies for the future of autism research, treatment, and policy changes. 

If there are any other topics/questions, you’d like for us to cover, please reach out to us via email or on Instagram. You can always connect with me via email at whattheautismpodcast@gmail.com or on our Facebook page/Instagram @whattheautism. We upload a new episode on your favorite podcast platform every Sunday. Please note that this podcast has been created to discuss my personal experiences and opinions and is not a means of medical or psychological recommendations. But if you enjoyed this podcast, please make sure to follow and subscribe to our podcast channel, and I’ll see you in our next episode. 

Intro: Welcome back to another episode on “What the AUTISM?!” This podcast is for anyone who is struggling with understanding what autism is and how we can better empower our autism community through research proven methods. In each episode, I will be sharing with you ground-breaking research and how the diagnosis of autism can often be misunderstood. If you are a new listener to our podcast, I highly recommend you start from episode 1 to catch you up to speed on various terminology and concepts! Now let’s get started…

Research Article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5392775/ 

In the research study we’ll be reviewing today, we’ll be talking about self injurious behaviors and exactly how prevalent this behavior is within children with autism. In 2017, a handful of researchers conducted a population-based study that reviewed a large sample of children with autism to gauge exactly how prevalent Self-injurious behaviors are within the autism population. 

Self-injurious behaviors (SIB) are quite diverse in its appearance. Common types of SIB in ASD include-head banging, hair pulling, arm biting, eye poking, and skin scratching. Often times these types of behaviors are established because of a child’s inability to communicate their thoughts and emotions. They have learned that when they engage in self injurious behaviors, they get an immediate response from their caretakers, which eventually leads them to what they want, whether that may be attention, release of built up frustration, and/or access to a particular food/object/person. Regardless of the function of the behavior, self injurious behaviors create a huge health and safety concern for families, schools, and within community members. As always, I’ll be including the research article on our Facebook page for you to follow along. The research article shows a table that breaks down the findings from this study to help you better understand the results of what these researchers found.

Analyzing the findings of this research study, they found that the prevalence of SIB in a population-based study of ASD averaged 27.7 % over three surveillance years. Due to various limitations and sampling differences in this study, there are speculations that this 27.7% may be an under estimation of the prevalence rate of self injurious behaviors amongst children with ASD. However, regardless, these results suggest that self injurious behaviors within ASD are common and deserve more clinical and research attention in order to further advance the level of awareness and treatment strategies. 

This study revealed that SIB are a common phenotypic characteristic among children with ASD and that its prevalence is higher than has been reported in children with other developmental disabilities. SIB are dangerous behaviors but it’s also important to note the amount of impact that it carries within the immediate family and community circles. SIB deserve more clinical and research attention but of course, this requires time, effort, and financial means. In conclusion, SIB in ASD is an important public health concern that affects many children. Future research is warranted to better understand its potential risk factors and consequences, in order to develop effective and more targeted treatment strategies.

Does your child exhibit SIB or SIB-like behaviors? Does your child struggle in communicating their thoughts, feelings, wants and needs? This may some times result in them hitting their head or banging their head against the wall. Some parents I have worked with in the past have also reported that their child at 18 months used to cry and repeatedly bang their head against the pillow or against their parents’ stomachs. Now, although this doesn’t warrant huge safety/health risks as the pillows and stomachs have cushion, but how...

Welcome back to another episode on “what the AUTISM?!” This podcast is for anyone who is struggling with understanding what autism is and how we can better empower our autism community through research proven methods. In each episode, I will be sharing with you ground-breaking research and how the diagnosis of autism can often be misunderstood. If you are a new listener to our podcast, I highly recommend you start from episode 1 to catch you up to speed on various terminology and concepts! Now let’s get started…

Today I wanted to talk about a research article that was published back in May 2020. It’s titled “Adherence to Screening and Referral Guidelines for Autism Spectrum Disorder in Toddlers in Pediatric Primary Care.” If you would like to follow along while listening to the podcast or if you’d like to review this study at another time, I have left a PDF file of this research study on our Facebook page. 

But the objective of this study was to identify and study the various factors that are associated with doctors/physicians completing a follow-up interview and referring families to the appropriate next step in services after the initial screening for autism. The American Academy of Pediatrics (also referred to as AAP) recommends that all young children are screened for the autism spectrum disorder (ASD) during their regular check ups with their pediatrician. But a common concern that has been discussed is the disparities in the ASD diagnosis and intervention across children of minority. This research study goes into depth on some potential contributors and some possible things to consider when we discuss the diagnosing of autism and the immediate next steps taken by physicians in their recommendations and referrals.

Prior studies that examined referrals after developmental screening suggest that patient characteristics such as race, ethnicity, or gender may influence physicians’ responses. One specific study which I’ll also include on our facebook page, found that a girl with language delays was 60% more likely than a boy with similar symptoms to audiology. Among a sample of very-low-birthweight infants who are eligible for early intervention services, referrals were much lower among children of black mothers, mothers without private insurance, or from towns with higher poverty rates. 

So in today’s research study, the researchers examined a group of children with positive results in their screening to estimate rates of completion of follow up interviews and the physicians’ adherence to AAP guidelines in referring patients to early intervention services, audiology, and/or for an ASD evaluation immediately. In this particular study, the screening that was provided was a M-CHAT-F which is a parent-report tool that involves 23 "yes/no" questions about a child’s behaviors to determine their risk of ASD. There is also a SWYC Milestones questionnaires that includes 10 age-specific questions to evaluate children’s attainment of motor, cognitive, and language skills. As part of routine care, caregivers completed both of these questionnaires and screening measures on an electronic tablet or through an electronic patient portal prior to their visitation with their physician. I won’t dig too far into the specific methods and measurements, but I did want to review the results of this study with you for us to have some type of dialogue of what this could mean for your child if you are questioning potential diagnosis of autism. 

The results of this study found that there are multiple factors associated with increased likelihood of follow-up interviews being completed. The research study includes very easy charts and tables that break down the various factors, such as ethnicities, genders, etc and the percentage of each population group that are provided with follow up interviews.

From this study, researchers found that despite a high rate of screening across pediatric primary care,

Welcome back to another episode here at What the Autism?! We hit our 10th episode, and I want to thank YOU the listeners from all around the world for tuning in and showing your support for our podcast! We have over 200 listeners from  24 different countries that are tuning in and I’m very excited to see our family here on this podcast channel grow! For those of you that are new here, welcome to What the Autism?! You can follow us on our Instagram and Facebook page, @whattheautism, for daily updates and if you have any questions or stories you’d like to share with us, you can email us at whattheautismpodcast@gmail.com. 

To celebrate our 10th episode here, today we’ll be running a Q&A session with questions that were submitted by our listeners. If you think of additional questions throughout today’s episode, feel free to email us or dm us on IG and we’ll answer those questions throughout the upcoming podcast episodes or in future Q & A episodes.

Question:

Why did you start this podcast?

I started What the Autism?! not only because I’m passionate about the work that I do, but also because throughout the 8 years I’ve been working as a clinician, I’ve witnessed so many family members who regretted some of the choices that they made throughout the years. And it’s not their fault. These parents feared the future of their autistic son/daughter. What would happen to their child if something happens to the parents? Is anyone out there to care for their child? And out of that fear, they wanted to provide anything and everything to their child in hopes that something sticks. But often times, that results in regrettable decisions that have left many families broken, financially, relationally, mentally, and emotionally. The purpose of this podcast is to help all our families understand the scientific research that is out there and to help parents make the most INFORMED decision when it comes to treatment and diagnosis. Time is of the essence and any wrong decision can waste money, and most importantly, time...time that your child cannot afford to waste. So before making any decisions on treatment, make sure you seek out the appropriate specialists, get multiple medical opinions and make sure you are well informed of type of services your child may need. 

Is it hard for high functioning Autism to be diagnosed?

When we say high functioning, this typically means that the individual doesn’t engage in high rates of maladaptive behaviors and can functionally communicate with others. Although high functioning autism may be less noticeable in the community, a credible psychologist should still be able to quickly identify if a child has autism no matter how severely impacted the diagnosis is. A high functioning autistic individual may struggle with emotional sensitivities, social difficulties, resistance to change, or certain fixations. But regardless of what type of symptoms are present, an individual that’s less severely impacted by the autism diagnosis should still be able to be diagnosed with autism if they meet the diagnostic criteria. In Episode 2 of my podcast, I review the diagnostic criteria for autism and what checkboxes psychologists are looking for when it comes to the autism diagnosis so make sure to give that episode a listen to see if your child may meet the qualifications for the autism diagnosis. 

I think my child has autism...what do I do?

The most important thing is to get your child diagnosed! Autism can be diagnosed as early as 18 months! Don’t let anyone tell you other wise. If your insurance provider and/or any agencies are telling you to wait till your child is 3 years old....don’t! Because when a child turns 3 years and then action is taken to schedule a diagnosis, by the...

Welcome back to another episode on “what the AUTISM?!” This podcast is for anyone who is struggling with understanding what autism is and how we can better empower our autism community through research proven methods. In each episode, I will be sharing with you ground-breaking research and how the diagnosis of autism can often be misunderstood. If you are a new listener to our podcast, I highly recommend you start from episode 1 to catch you up to speed on various terminology and concepts! Now let’s get started…

Today’s episode will be covering the last part of our ABA 101 series. During the last 3 episodes, we talked about the ABCs of ABA, what behaviors are, the functions of behavior, reinforcement versus punishment, so today we’ll be talking about reinforcers and how we establish motivation in our children.

Let’s get started with a quick recap. Last week’s episode covered the difference between reinforcement and punishment in ABA terminology. Remember that reinforcement occurs when a behavior INCREASES because of a consequence of either adding or removing something from the environment.  By definition, a reinforcer INCREASES behavior and there are 2 types of reinforcements: positive and negative reinforcement. 

Positive Reinforcement: A behavior occurs. A stimulus such as a person, an object, etc is presented immediately following the behavior. The probability of that behavior occurring again in the future increases. 

Negative Reinforcement: A behavior occurs. A stimulus is removed immediately following the behavior. The probability of that behavior occurring again in the future increases. Let me remind you, that just because the word “negative” is present, it does not mean anything bad. 

What are some examples of reinforcers? Any items/access to activities such as electronics (tablets, video games, etc) or access to locations are all common examples of reinforcers.

What effects reinforcer effectiveness?

We must remember 4 different variables that effect reinforcer effectiveness. They are: deprivation/satiation, immediacy, size, and contingency.

1) Deprivation/Satiation: Often referred to as not enough or too much of a good thing!

Deprivation: Not having access to something that is highly desirable. Often this is used to increase the value of an item/activity to someone. 

Example:  

• I’ve been working all day and haven’t had a chance to eat. Because I haven’t eaten anything, I’m deprived of food, so my motivation to get food is higher. 
• If my child had access to their video games removed, their motivation to gain access to play their video games is higher. 

Satiation: This is the opposite of deprivation. Satiation refers to having too much. If the same reinforcer is used over and over again, it will lose it's reinforcing value.

Example:  

• Let's say you ate a cheeseburger for lunch today and for dinner, your friends want to go out to have burgers. Tomorrow, your co-worker suggests grabbing a burger for lunch again...no thank you! You are satiated with cheeseburgers.

2) Immediacy:  The item that is serving as the reinforcer needs to be delivered as quickly as possible as soon as the target behavior occurs. The longer the amount of time lapses between the behavior and the delivery of the reinforcer, the less effective the reinforcer will be. 

Example:

• Let’s say that Johnny was promised by his mom that he’ll get a lollipop if he’s behaves in the grocery store today. Johnny is on his best behavior, and on their way out of the store, mom promises that he gets his lollipop. However, on the way home, mom forgot that she has a...

Have you ever come across a situation where a child doesn’t listen to you, no matter what type of punishment or negative consequences you place on them? Or have you ever seen a child start losing interests in earning some of their most favorite activities, toys, or foods? Today we’re going to talk about reinforcements versus punishments and what type of strategy may be the most helpful for your child. Please note that I’m not a child psychologist nor a family therapist. I’m a board certified behavior analyst that is here to talk to you about behaviors and how we can shape and develop desirable behaviors in our children. If you enjoy our podcast, please make sure to follow our podcast channel and follow us on our Facebook page and Instagram @whattheautism. 

In today’s episode, there will be some technical language and vocabulary that is specific to ABA, but be patient with me, as I’ll be breaking down what each of these terms mean and present to you some everyday examples that may be helpful in you understanding a little more about ABA. 

Now let’s start with “what is reinforcement?”

Reinforcement occurs when a behavior INCREASES because of a consequence of either adding or removing something from the environment.  By definition, a reinforcer INCREASES behavior. Remember that consequences is not a negative association like a punishment. We talked about consequences in episode 6 where we described consequences as anything that occurs after a behavior takes place. So for example, let’s say that Jenny is instructed by the teacher to go to her desk to complete her worksheet. Jenny starts crying, whining, and throwing her toys around the classroom. Because the teacher is busy working with the other kids, she puts Jenny on a time-out until the teacher is ready to work with her. Now, based on all the things we talked about in previous episodes, what do you think will happen in the future when the teacher tells Jenny to complete worksheets? Jenny will continue to engage in tantrums and inappropriate behaviors in order to get out of completing her worksheets. So during the next couple days, she continues to exhibit these inappropriate behaviors. This “time out” now functions as a reinforcer in this situation. Why? Because these inappropriate tantrums and whining behaviors have increased.  If you need a couple seconds to digest this concept, I suggest you take a pause here before moving on.

Now digging a little further into reinforcements. There are 2 types of reinforcements: Positive and negative. Don’t let the word negative get you to think that it comes with a bad connotation. It’s simply referring to whether a stimulus has been presented or removed. 

1) Positive Reinforcement: A behavior occurs. A stimulus such as a person, an object, etc is presented immediately following the behavior. The probability of that behavior occurring again in the future increases. 

Examples: 

• Bob finishes his math homework and afterwards he gets a piece of gum. A piece of gum is the stimulus that is presented. And because Bob is motivated by gum, the probability of him completing his math homework to get more gum increases.
• George sits appropriately in circle time and exhibits listening skills by answering questions about the story. This earns him 10 minutes of his favorite activity: blowing bubbles. The activity of blowing bubbles is a stimulus that is presented and because George is motivated by this activity, the probability of him engaging in circle time in the future increases. 

2) Negative Reinforcement: A behavior occurs. A stimulus is removed immediately following the behavior. The probability of that behavior occurring again in the future increases. Let me remind you, that just because the word...

What are the 4 main functions of behavior:

1. Escape
2. Access to Tangible (activity, object, anything)
3. Attention
4. Automatic (behaviors that you engage in because the specific internal sensation/feeling that you get feels good)

Remember, a behavior is only a behavior when 1. The action is measurable and observable 2. Passes the dead man’s test. These are things that we reviewed last week in episode 6, so make sure to take a listen if you missed last week’s episode! 

So let’s start talking about autism. How does the identification of the functions of behavior help in treating those with autism? When children engage in socially inappropriate behaviors such as aggression and self-injurious behaviors...if we do not understand why the child is engaging in these behaviors, we can’t properly treat the behavior. This results in a treatment program that will never get to the root of the problem.

We also review a research article that was published in 2018 titled "The Big Four." The purpose of this article is to suggest that by adding prevention practices to early intervention guidelines for problem behavior, this would increase the effectiveness of a treatment. The article talks about how understanding the core functions that produce problem behavior teaches us how to arrange environments and how to teach skills that would prevent problems from occurring from the start. I’ll go ahead and link this study on our facebook page, but it’s extremely important that we focus on the reason why a child is engaging in a specific behavior rather than how the child is engaging in the behavior. 

I’m really excited for today’s episode because this is an episode that will benefit listeners of all backgrounds. So whether you are a parent (you don’t have to have an autistic child for ABA strategies to be beneficial to your parenting), a treatment provider, or even someone who’s just curious about ABA. I’ll tell you from the start, ABA does NOT always equate to autism therapy. ABA can be used for anything and anyone that engages in behavior...which is basically all living and breathing organisms. ABA has been proven to be an effective method of treatment for children with autism, but ABA has been an effective method for those that struggle with substance abuse, fitness coaches, nutritionists, life coaches, organizational behavior management (which focuses of the behavior of a company’s employees and the company itself). 

What is ABA? ABA is a therapy based on the science of an individual’s behaviors and how they learn. So in other words, behavior analysis helps us to understand how behavior works, how a person’s behavior is affected by the environment, and how their learning takes place.

The main goal of ABA is to increase behaviors that are helpful to an individual and decrease behaviors that are harmful or that can negatively impact learning. Ways that ABA therapy programs can help...is 1. Increase language and communication skills. 2. Improve attention, focus, social skills, memory, and academics 3. Decrease problem behaviors, such as intense tantrums, aggression, non-compliance, property destruction, and many more. ABA has been existing as a therapy treatment since the 1960s and since then the research behind ABA and its effectiveness has been thoroughly investigated and proven time and time again. During the last 3 episodes, I’ve touched on various research that proves the effectiveness of ABA and some common myths that have been debunked by research. Tune into episode 5 if you’re curious to hear more about other common myths on the topic of the autism diagnosis. 

But to dive into the topic of ABA treatment, I’m going to simply breakdown some very basic foundational principles of ABA. This is going to be extremely helpful to know for future episodes when we dive further into research that has more complex concepts and scientific terminology. 

In ABA, the surrounding environment is extremely important. When we first start services for our patients, what’s most important is that we control this environment to ensure that we create as successful of a learning opportunity as possible. In order to do this, we first need to understand how these environments are studied and how to effectively utilize these variables to control the environment.

First, we need to define what the word BEHAVIOR means.  We define behavior as anything a person says or does that involves movement and has an impact on the environment. A behavior needs to be able to be observed, described and recorded. It needs to be able to pass what we call the dead man’s test. Basically, the concept is that If a dead man can do it, then it is NOT a behavior! So for example, a child not paying attention, not a behavior. Why? Because a dead man can do that. A child being non-responsive is not a behavior. Why? Because a dead man can do that. A child working on their homework, running, playing with their friends are all examples of a behavior. 

Another common mistake that many people make is what we call circular reasoning. For example, some parents will come to me and say "Johnny doesn’t do his homework because he’s lazy?" So if I ask, "Why is Johnny lazy?" The parents will say "Because he doesn’t do his homework." There is no end to this circular reasoning. And this results in a behavior that can’t be observed. I can’t observe Johnny being lazy. What does lazy look like? How it looks for me might be different for someone else. If we can’t observe it, we can’t measure the behavior. And a behavior has

In today's episode, we talk about some common myths that people have about the autism diagnosis and how research has debunked them!

1. Autism only affects children. False!
2. Autism is just an issue with the brain. False! Co-morbidities (GI issues, sleeping problems, epilepsy, etc) are very common in children with ASD.
3. Autism is caused by bad parenting. FALSE!! Research has proven that there was no difference in parenting styles between parents of typically developing children and parents of children with autism/anxiety disorder.
4. Vaccinations causes autism. FALSE! We reviewed Andrew Wakefield's 1998 study that claimed that the MMR vaccine caused autism. This study was retracted in 2010, but in this episode we dive deeper into this study to examine issues with this research study.
5. All autistic people are extremely gifted/talented with memory skills, numbers, music, art. False! Although this may be true for SOME of our children, this doesn't accurately reflect across all children with autism.
6. ABA treatment turns children into robots! FALSE! A good ABA treatment provider ensures that their programming has variability and generalization. ABA treatment has been research proven to be the most effective in treating autism.

Go to our facebook page @whattheautism to find each perspective research articles and supporting studies to debunk every single one of these myths!