What the AUTISM?!

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 [email protected] 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...