What the AUTISM?‪!‬ Amanda Kim

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…
Today, I wanted to talk about teaching our children about safety...safety on the streets and safety on the internet. We live in such chaotic times where practicing safe habits can never do you and your child any harm. There are danger zones all throughout our communities, and many of our parents have nothing but fear and anxiety for their children. I wanted to talk about some basic strategies to help our parents prepare their children.
First, let’s talk about community dangers. What will my child do when he/she gets lost while we’re out in the community? Will my child know what to do if a stranger with bad intentions approaches my child? How will my child respond when confronted by the police? If you’ve never taught your child any of these skills, I think the majority of our parents listening in are in a situation where they cannot entrust their child to make the right call in these situations, especially for a child that has an autism diagnosis. These are skills that need to be taught and reviewed with your child over and over again. If your child is in any type of treatments, I recommend you bring up these concerns with them immediately. A really good indication of a good treatment provider is that they would and should have already reviewed this topic with you. But if your child is not yet in treatment, I would start with visuals. Print out pictures of different safety signs and review them with your child. Then take them out on community walks/drives to have them identify them. For more complex situations when it comes to identifying dangerous strangers, I would start with the hypotheticals. Teach them strategies in the home by teaching them ways to avoid different strangers and how they could seek help immediately. When you feel like your child may have the basic knowledge, I would embark in what we call the “stranger danger.” Seek out close family/friends that your child would not be able to identify. Ask if this individual if they can pretend to be a stranger and have them probe different questions and information from your child. This will be a great way to see what your child would do in these types of dangerous situations. Also, a recommendation a lot of parents skimp out on, but I would highly insist on is taking a visit to your local police station. Get to know your local law enforcement. I truly hope that you and your child never have to face any dangerous situations that require the law enforcement to get involved, BUT you can never be too safe. Take a trip down to the station and make sure they have a face to your son/daughter. It may help you and your child in any difficult situation. 
Now, let’s talk about one of my favorite topics: the internet. Talking about internet safety is a MUCH newer topic of conversation, but it’s a much more complex skill to teach and navigate through. If your child is on the younger age range and just becoming exposed to games and online platforms such as Youtube, I highly recommend you start with extremely restricted usage. There are online predators on any possible platform you can think of, and I don’t mean to scare any of our parents, but it is EXTREMELY important that you are more aware of the possible dangers in handing your electronics over to your child while being left unsupervised. If your child is younger than 5-6 years old, I would monitor every video they watch and every game they play. Do not let them explore different apps...

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…

The years of 2020 and 2021 has been quite an eventual time. There have been so many global and cultural issues that will for sure be written in our history books in the years to come. As I was thinking about the next topic of discussion for our podcast, I wanted to talk about an area that many of our families may not realize is a large factor in our children’s lives. The topic of cultural differences. I don’t want to talk about the politics of all these different issues, but I do want to bring to light that your cultural identity as parents does greatly impact the way your child’s ASD diagnosis and treatment services come into play.

It’s a no-brainer that there has been a vast amount of research conducted on ASD, covering the realm of biomedicine, treatment, healthcare policies; however, an area that needs more research coverage is studying ASD from the perspective of minorities, especially for the AAPI community. There’s been quite a bit of research observing and analyzing the Black and Hispanic community, but I believe that the AAPI community has received very minimal amount of investigation and analysis when it comes to autism. While working with quite a bit of Asian families, and coming from an Asian heritage myself, I’ve come to see that there are some cultural differences in perspectives that can affect the diagnosing and treating of ASD within our children.

Coming from an Asian heritage I think there are still this level of stigma that comes with children being diagnosed with learning disorders, such as Autism. There is definitely a feeling of failure and shame on the mothers’ end. Fortunately, many Asian countries are starting to realize the growing prevalence of Autism and related disorders; however, I think there’s still quite a bit of shame and embarrassment that comes with this diagnosis for many Asian families today. I think a lot of these mixed emotions along with denial is often times what results in some children being diagnosed at a much later age, but for our Asian American listeners out there, if you suspect that your child may be showing any signs of delayed learning, please make sure you have your child evaluated by a psychologist. With now 1 in 54 children being diagnosed with Autism, this is not a individual issue that needs to be faced with shame and guilt, this is a global issue that needs to be continuously addressed through research and health care interventions. The sooner you can get your child diagnosed, the quicker your son/daughter can get the support they need!

Another area that I want to talk about is what services may look like for your family and your child. When you place your child through various therapy services whether it’s for speech, behaviors, or gross motor concerns, please don’t think this is a “the therapist knows best and will ‘fix’ my child.” GET INVOLVED! Ask questions! Get the training you need to better understand the treatment that’s being provided. Regardless of what treatment your child receives, the purpose of this treatment is for it to be ongoing 24/7 whether the therapist is present or not. This means that you need to be fully informed and trained on what you can do to best support your child when they’re not in therapy sessions.

If your child is enrolled in school, your treatment providers NEED to be in collaboration with your child’s school teacher. We need to have an ongoing healthy collaboration of

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…

I want to use today’s episode as an opportunity for us to have an open dialogue with our listeners who have been impacted by the autism diagnosis. Today I’ll be sharing with you a short snippet of my experience working with children and adults diagnosed with autism and provide you with an opportunity to share yours!

Let me tell you, since 2013 when I first started working as a behavior therapist, it’s been a long journey of learning for me and the learning never ends. When you think you know everything there is to possibly learn, a new learning opportunity arises. And I think that is what’s most important in this whole conversation about autism awareness. No one expects you to know everything there is to this diagnosis. What would encourage and support this community of individuals is for the us, the community, to remain open-minded and curious to learn more about the diagnosis, so that we can help dissipate some of the discrimination towards individuals with learning disabilities.

During the last 8 years of working with children and adults with autism, the biggest feedback I’ve received from friends, relatives, random strangers is “wow! You must be really patient.” And they couldn’t be any further from the truth. I’m definitely not as patient as I would like to be. I don’t like to wait in any sort of line for more than 5 minutes. I don’t like drivers who take their time making a wide right turn instead of using their blinkers to cut closer to the curb. A new year’s resolution that I miserably fail at since birth is “being more patient.” So why and exactly how did I continue working with the autistic community? You see, working with individuals with a learning disability isn’t necessarily about patience...I’ve learned that it’s about urgency and envisioning a bigger future. Patience can only get you to a certain point before you race past your threshold and you completely burn out, and that was one of the first things I learned when I started off as a behavior therapist. Whenever I had a new bruise or a bite mark, or whenever I lost another t-shirt to an aggressive episode, patience without vision only made me exhausted and fearful heading into another day of work. So what do I mean by “urgency” and “vision?” As a BCBA, I learned that a treatment program needs to be approached with urgency. Opportunities to maximize learning are limited. When I see a 2-year old, I get a sense of urgency...urgency to teach this child everything I possibly can to get them at their developmental milestone. The window of learning opportunities only grow narrower every year, and without a sense of urgency, there is no progress. This leads me to the topic of vision. As someone who works closely with families and individuals greatly affected by the autism diagnosis, it’s extremely important that we stay focused on the goals and the bigger picture. I ask parents at the beginning of their child’s treatment to start thinking about what they would like to see their child accomplish. I’ve had parents cautiously tell me that they want to see their child go to college, but to them it feels like wishful thinking. I’ve had a dad come to me and tell me that he just want his son to be able to play a game of catch with him. There are some 16-year-old clients that have told me that they want to own their cafe or their own nail shop. I’ve also had a 17-year-old client tell me that he

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…

Throughout the last 16 episodes, I’ve covered quite a large range of topics and areas of concerns that many families typically have when their child is first diagnosed with autism. All this information can often times be a bit overwhelming, so in today’s episode, I wanted to quickly review through some recommendations for any parents and/or caretakers that are new to this topic of autism.

As a clinician, there are a couple BIG recommendations that I can’t help but emphasize.

First, if you’re suspecting that your child may be autistic, have a psychologist see your child IMMEDIATELY. Delaying your child’s evaluation is only delaying the options you may have for your child in the future. Every month is a huge growth spurt opportunity for your infant, and as they grow older that window of opportunity grows narrower. So it’s extremely important that we don’t waste time. Getting an appointment in with a psychologist can be a very long wait, so make sure you do whatever you can to get an appointment in sooner than later. Just like with any medical doctors, there are private clinics and there are also county and/or state-funded clinics (in the state of CA, they’re referred to as regional centers). There is a wide range, and of course with each type there are pros and cons. For private psychologist clinics, you might have to pay out of pocket, dependent on your insurance benefits, but your child’s evaluation should be expected to be clinically very specific and customized to what your child may need. Dependent on their client-base, you may also be able to get an appointment in sooner than a county-funded clinic. The county-funded clinics should provide an evaluation free of charge; however, due to the higher level of need, the wait time might be longer and their evaluation will typically be a template assessment that’s completed. Every state has different resources available, so make sure to do your research on what resources are available for your state. I know we also have quite a bit of international listeners, as well. I’ve only worked with clients within the state of California, so I can’t provide specifics to any out-of-state nor international folks; however, I did leave a link to the ASHA website that provides state insurance mandates for the autism spectrum disorder. This is extremely helpful to review and understand before trying to set up any logistics with your insurance provider and your treatment providers (https://www.asha.org/advocacy/state/states-specific-autism-mandates/).

Second, do your research. There are so many voices screaming at you in so many directions. What’s most important is that you make the best decision for your child. But ensure that before you make any key important decisions, you do your research to understand what the scientific research has shown. I’ve worked with quite a handful of parents that have paid out of pocket for various treatments that claimed could “cure” autism. I’ve also witnessed families bend over backwards to get their child into a program that claims to be ABA treatment, but after much time, we found out that their methodologies aren’t based on ABA principles. So I just want to reiterate the importance of doing your research and asking various questions and addressing your concerns before signing up for any type of service.

Third, know that every decision you make is extremely important for your child. I’m not