Episode 4 – Autism Acceptance Month

Show Notes

Tiffany Klauba and Whitney Ryan, Ph.D., of the Autism Society of Idaho joined us all the way from Coeur d'Alene, Idaho, via video call, and shared with us how daily life can differ for individuals with Autism, and what we can do to make our world more inclusive and accepting. This episode is sponsored by Melaleuca, The Wellness Company. 

Resources: 

Autism Society of Idaho
Social Thinking
Unstuck and On Target

What is Riverbend Awareness Project?

The Riverbend Awareness Project brings you a new conversation each month about important causes and issues in our community. Every month of 2024 we will sit down and have a conversation with a professional from our community about significant issues like heart health, Alzheimer’s, literacy, and more. We’ll then share that conversation with you on the Riverbend Awareness Project Podcast, with the goal of sharing resources, and information that will help you have a better understanding of the particular problems, and solutions, associated with each topic.

Disclaimer: The views and opinions expressed in this podcast episode are solely those of the individuals participating and do not necessarily reflect the views or opinions of Riverbend Media Group or the Riverbend Awareness Project, its affiliates, or its employees. It is important to note that the discussion presented is for informational purposes only and should not be construed as medical advice. Listeners are encouraged to consult with qualified health care professionals for any medical concerns or decisions. The Riverbend Awareness Project is a product of Riverbend Media Group.

Melissa: Hey, this is Melissa.

Russell: And this is Russell.

Melissa: Thanks for joining us on the Riverbend Awareness Project. Each month, we dive into a topic our community is affected by and share how you can help. This month, our episode is sponsored by Melaleuca.

Russell: April is Autism Acceptance Month. We have two guests today, Tiffany and Whitney. Could each of you introduce yourselves and your background and how your education qualifies you to speak on autism?

Tifffany: Absolutely. So, my name is Tiffany Klauba and I am the executive director of the Autism Society of Idaho.

I do have a degree in business management, so I do run the day-to-day for the Autism Society and everything that that entails. I also am the mom of a 5 year old autistic son who was diagnosed nonverbal level 2, which is a moderate to severe, basically, version of autism, and he is my entire world in inspiration to this. I got into doing this because I had no information or resources when he was diagnosed, and this has become my passion. I live it 24/7, and I'm available to anybody in the state, basically, 24/7 as well. So, yeah, I— this is just my life.

I've learned based on experiences talking with people. I read constantly about autism. Anything you could possibly wanna know, I pretty much absorb it like a sponge. So yeah.

Whitney: And I'm Whitney Ryan.

I am a clinical psychologist here in Idaho. So I have my doctorate degree in clinical psychology, and most of my training was initially focused on the evaluation of neurocognitive function in kids with complex medical conditions. And as I kind of advanced through my career, I started working more and more with children and adolescents on the autism spectrum and really kind of developed just a passion for the population. I went on to work at a children's hospital in a clinic dedicated to evaluating and diagnosing autism spectrum disorders. After about over 10 years in a children's hospital, I recently opened my own practice that's exclusively dedicated to diagnosing and evaluating for autism spectrum disorders here in Idaho.

Melissa: Awesome. Thank you, guys. We're so excited to have you today.

Whitney: Thank you. We're excited to be here.

Melissa: So to start off, how would you explain what autism is to someone who's unfamiliar with it?

Whitney: Great question. So I think it's important to highlight, and I won't spend too much time going to this, but I think it is important to mention that for individuals diagnosed with an autism spectrum disorder, there are really two areas that are impacted. So one is kind of the social communication and interaction piece that we kinda stereotypically think of when we think about the autism spectrum disorder. Right?

So individuals may have challenges making eye contact or interacting with same-aged peers or reciprocal conversation, and sarcasm may be challenging. So there is that kind of social communication and interaction piece. However, in order to meet diagnosis for an autism spectrum disorder, individuals must also have restricted interests and repetitive behaviors. So those can be things like having an adverse response to loud noises or certain textures, having a need for routine, for things to go according to our expectations, or to engage in some ritualized behaviors. So really, like, again, really routine-oriented behavior.

We see repetitive motor movements or behaviors, so that can be things like pacing, or in some we'll see hand flapping. Some kids, what we see is they'll sit there and kinda line all the toys up rather than engage and play with them. And so, again, to meet criteria, yes, we have this social/emotional piece. However, there is also this restricted behavior and interest piece that also has to be met in order to meet criteria.

Melissa: Okay, thank you. Are there... You talked about... How do I phrase this? The— what did you— you said spectrum. How did you phrase that?

Whitney: Great question and very confusing to many people.

Melissa: Yes. Sorry. That was a bad delivery of that question, but I guess— how— what is the spectrum, and what are the different types of autisms on the spectrum? I don't know if I said that properly, but—

Whitney: Nope, it's great. It's great, and I think this is really confusing. This has shifted a lot even throughout my career, and I— my understanding is we're shifting again. But right now, we have one kind of formal diagnosis that is the autism spectrum disorder. And that is obviously a huge, huge spectrum of behaviors.

Right? We have some individuals on the autism spectrum that will require pretty substantial support there in for the span of their life. And then we have some individuals who require very minimal support. I mean, some of the most successful people in the world are on the autism spectrum. Right?

So it is this huge, huge spectrum. We used to have different diagnoses, like Asperger's, which you may have heard the term. That is no longer terminology that we use when diagnosing. So now we really just have the autism spectrum disorder. And there are some qualifiers, like whether an individual also has language impairment or intellectual impairment.

And then you can also assign a severity level. So, severity level 1, 2, or 3, depending on the amount of intervention or support a child will need. So I would say we don't really have types so much as one diagnosis with kind of some differentiating factors, but still not really. We kinda just view it as this huge, all encompassing spectrum.

Melissa: Thank you for that clarification.

Russsell: So what causes autism, and what role do genetics play in autism?

Whitney: Also a great question. There's not just one known cause of autism spectrum disorders at this point. I would say we still have a lot to learn in that area. I think we have a general idea that it's kind of a combination of factors, so genetics certainly can play a part.

There are some environmental factors that can play a part. There have been some factors that have been identified in research that puts individuals more at risk of developing an autism spectrum disorder. But that's not the same thing as cause. Right? So for example, one of those things is children who were born with parents who are older in age.

So while that might increase the risk of a child developing an autism spectrum disorder, there are certainly thousands of kids born with older parents that do not have an autism spectrum disorder. So again, while it might increase risk, it's really not a specific cause. And a couple other of those factors, just to keep in mind, is... so besides kind of age of parent, having a sibling on the autism spectrum increases the risk of another child having the autism spectrum, the genetics piece. Certain genetic conditions like Fragile X syndrome, you're more likely to be diagnosed with an autism spectrum disorder. Complications during delivery is believed to potentially have some impact.

So, again, we... There's just a lot left to learn on that front.

Melissa: Knowing or beginning to understand these possible contributing factors, I don't know if that's the right phrase, how is autism diagnosed?

Whitney: So a couple different ways. I would say the primary places and, Tiffany, if you have any comment on this, step in in case you disagree, but I would say the the main places that we see a diagnosis happen is with a pediatrician or, like, a medical provider kind of physician or a psychologist. Sometimes that can be through a process of going through a detailed interview with parents to kinda go through the different criteria, interacting with the child.

Sometimes that information alone is enough for a provider to feel confident making a diagnosis. Other times, it would require kinda more thorough evaluation. So we'll have kids come in and still do all the same kind of detailed interview, but then we'll also do some standardized assessment. So we might look at cognitive functioning. Almost al— well, not always, but often, we'll hear something called the ADOS used, which is, like, this hour-long, play-based assessment that's really, like, designed to elicit certain social skills, and we see kinda how kids do one on one.

We'll get feedback from teachers, from, you know, other adults in the kids' lives. I would say that those are kind of the two main routes, either kind of clinical interview or more thorough evaluation. Do you have anything to add to that, Tiffany, about any other ways that you feel like you hear families come to a diagnosis?

Tiffany: That's the main way. I think what's becoming more common, at least that I've been getting a lot of phone calls about, is adults wanting to be diagnosed, which that's a whole different ballgame because you don't have, like, teachers, and you don't have a lot of family members that interact with them on a day-to-day.

But they're always curious as to how their behaviors and their social awkwardness or whatever they're struggling with— like, is there a reason behind this? And a lot of them, there is. They just didn't diagnose because it wasn't really common over the last decade or so to really focus on autism and it being a thing. And, unfortunately, there are a lot of providers out there that will not do adult diagnostics because they don't see the point, but there really is.

So, learning why you tick is always very important, basically, for anybody just to have the best life. So, yes, we need to really get some more providers on board with the adult test.

Whitney: And I think what is hard about that just from, like, the diagnosing perspective, because it does come up all the time— I'll work with kids, and parents are like, you know, this sounds a lot like me. But I think what's hard is the autism spectrum gets diagnosed not just like does a person engage in these behaviors at this moment in time, but do they or have they ever?

So a lot of times, we don't see as many sensory issues in adults, or they kind of present differently. And so it really is important to have information from when a child was younger, and that's often really hard to get depending on, like what Tiffany was saying, what adults are available to report on childhood.

Melissa: Mhmm. That rolls into the next question. Like, what age can autism be identified? And I think that brings out that point that, like, it's important to... if you can, get it diagnosed as early as you can. But if you can't, you should still try and find out, like, so that you can get resources and understand your own makeup better. So... sorry. Is there any other... to add to that about, what age to be?

Whitney: No, I think you kind of hit the nail on the head as far as the younger, the better just because it allows us to access early intervention, and research really supports the benefit of early intervention. So we will make a diagnosis pretty reliably as young as 18 months to 2 years. I think you'll have parents report symptoms sometimes even younger, but I would say most providers will diagnose around 18 months, 2 years, and then all the way through the lifespan.

Russell: What are some of the signs you're looking for in a child that young?

Whitney: Great question.

So a lot of that comes down to, like, nonverbal social cues. So things like— one of the big things we look at is something called joint attention, which is sort of how interested are you in the people around you. So things like if, you know, kids look out the window when they see a school bus that they think is really cool. Right? Some kids will be like, "mom," you know, "look at this."

Kids on the autism spectrum might be more likely to enjoy it without having to reference parents or other people to see, like, "do you think this is cool?" Some times eye contact, of course. We look at pointing. A lot of times, individuals on the— kids on the autism spectrum that are young don't point as readily or as young, so they might kinda reach for things, but they don't show, like, a pointing of things. Tiffany, do you have anything else to add that's, like, kind of the young behaviors that we really look for?

Tiffany: Yeah. So, with my son in particular, being that he was nonverbal, something that they were really evaluating with him was the fact that most kids, if they— like Whitney was saying, if they're interested in something, they try to get their parents' attention.

Well, my son didn't have any initiative to even, like, try and get our attention to take him to something he wanted. It was just he would get really frustrated and start crying and have, like, the kid tantrum meltdown, because he didn't understand that he could get our attention and take us to what he needed, and that was a big issue for a long time with him. He didn't even start talking until about a year ago, which is amazing, by the way, when that happens. But it is so frustrating when you're a parent and your child is injured or sick, and they have no way of telling you what's wrong. They don't— the receptors in their brain are not telling them to point or show what is hurting.

They just know they're hurting. So it definitely makes life a little bit difficult when you're a parent. But, yeah.

Melissa: That leads to the next part. Why is it important? Like, you've just started to touch on that, but why is it important to get that diagnosis?

Whitney: I think the big thing is to access intervention. Right? We have a lot of tools now. There's things like speech and language therapy, occupational therapy, applied behavior analysis. So there's just a lot of intervention out there, and it would be nice to be able to access that without a diagnosis.

But oftentimes, insurance and different systems require that there be a diagnosis in order to really access some of these services.

Russell: So you just mentioned that getting diagnosed can help with more of the formal, maybe the paperwork with insurance in getting that help. How else does life change when someone is diagnosed?

Tiffany: Oh, man. It is amazing, honestly.

It really opens up the entire world to these individuals. It's one of those things where you don't know to ask for help if you don't know that you have an issue. So then being able to have a speech therapist helps them with their dialect, helps them with their confidence, being able to describe whether it's just with, like, the picture communications with an AAC device, which is like a iPad that they can point to things on and touch buttons that will speak for them, sign language, just learning verbal cues just even if it's just one word like yes or no. It opens up their world to be able to actually communicate and limits those frustrations.

They also, like, if they have sensory issues, for example. You go into a store and you have issues with, like, the sounds and everything. You understand why. So you... There's other ways that you can adapt your life to make life a little bit more comfortable. So, like, if parents or something— you know you're going to a crowded area and you know that the noise is too much for you, you know to bring ear protection or earplugs that are noise-softening or noise-canceling that makes your brain be able to process the information because it's so easy to get overstimulated. It just really makes life a lot easier on the day-to-day.

And, honestly, it's not so much that it's difficult or changes much for the individual besides the "aha" moment. This is why I tick this way. It's mainly we've noticed an issue for the family. They grieve. Basically, they think that a diagnosis is a label or it's going to set them up in life to be treated differently, and that's really not the case because there are a lot of individuals that go on to live normal, typical lives, get married, graduate college, you name it, but they just know how to function better on the day-to-day.

But the older generation, because they grew up with autism being labeled as something else, which I don't like to use the "r" word, it really like, they have this fear of that label being on their children, and unfortunately, it will set them up for failure. They refuse to just let them adapt and get the services they need and help them thrive.

Russell: Can you give me some more examples of how the day-to-day would change exactly? Like, what are some of the small things that would change with the diagnosis?

Tiffany: So for kids, for example, let's say you're day-to-day frustrated.

You have to get ready for the morning. Your parents tell you to get dressed, but you don't understand how to get dressed. When you're autistic, you really need that step by step instruction. So if you're trying to say, oh, you need to get dressed, you need to explain. You gotta put your socks on first and then help them do that if there's a problem. Then you need to put your pants on, and then you need to put your shirt on, and you put your arms in first, because their brains just don't calculate all the steps it needs to happen in order to be successful at that task.

Same thing when it comes to, like, brushing your teeth. They understand what brushing your teeth is, but they also need guidance on pull out your toothbrush, put toothpaste on the toothbrush, brush your teeth for allotted amount of time, rinse it off, wipe your mouth, rinse your mouth out, that kind of stuff. They just really need help with that. And once you are you're able to give them those cues, even if it's a visual cue in the bathroom, basically, so they they can see, okay.

I did that stuff. I did that stuff. I did that stuff. It really helps them succeed in life. And the same thing goes for adults.

When you have adults that need to go to work, make sure you set the alarm, because that's a common thing that you would think to do, but it's not necessarily on the to-do list of an individual that struggles with executive functioning. Just like... I don't know. You know, say Idaho, for example. There's snow outside. You know that you gotta wipe the snow off your car, but you don't leave yourself enough time to do that, so you're late for work.

So you need to make sure that you have those steps in place and that you know how to allot your time for time management a little bit better because you know that those are areas that you struggle. Those kinds of things.

Melissa: What are some other ways that life is different for someone with autism?

Tiffany: Their social cues, honestly. The social aspect of life, I mean, that's what keeps you you going.

You have to have your friends, your family, dating. That's a huge thing with the autistic community. And if you don't know how to relate to people, you don't know how to talk to people, and you don't pick up on social cues like a normal person would or a neurotypical example. It's really frustrating because you want so badly to have these friends to fit in to adapt to that social group, but you don't understand why they do the things they do. It's really difficult.

Same with dating. Your brain will tell you, oh, I really like this person. Oh, I've seen, like, on TV, they kiss when they like somebody. It's very likely that that individual will try to give you a kiss. They don't understand that that's not appropriate.

Same with friendships, like, they don't understand, like, when, for example, an autistic individual will be hyperfixated on something. So my son right now is obsessed with Pokemon, and all he wants to do is talk about Pokemon. Well, there's a lot of people out there that don't want anything to do with Pokemon. But it's like, he just... That's his thing. He wants everybody to be involved with it, and he has to play with his toys with it, and he doesn't understand why.

He just wants his friends or his peers to play with him, but he doesn't understand why they don't have an interest in it. And it can be like that throughout your entire life. Your focus and hyperfixation can shift, and it usually does just based on experiences that you encounter. It's just— and then, like, a family dynamic. Like, I was just talking about before, you've got siblings that are neurotypical.

They function. They go do sporting events. You don't understand why you're unable to or don't have any interest in going to a sporting event. Like, that doesn't look like fun to you. But everybody else wants to do it, so what does that mean?

And then you've got your family that may not accept the fact that you've been diagnosed with autism. So they try to make you adapt and be forced into a society that is not built for you, that's not ready for you. And that's not fair. It makes life very difficult for these individuals to not just be accepted for who they are and what their interests are.

Whitney: Can I add one other thing? Just may I chime in, Tiffany?

Tiffany: Absolutley, Yeah.

Whitney: I think important also to mention is— and I'm not sure if it's, like, kind of a social feedback loop or kind of social cues, but even for individuals that are very, very high functioning on the autism spectrum that require very minimal support, a lot of times adaptive behaviors can be really challenging. So, things like thinking to shower every day, to brush our teeth, to wear deodorant... And that can be really frustrating for families when you're like, every other 16-year-old is doing this.

Why aren't you doing this? But really recognizing that it has nothing to do with intelligence. You know, it will probably need some work with social cues and just kind of the social feedback, but those skills can just take a little bit more time to develop that. Potty training also, when kids are young, can be very difficult for kids on the autism spectrum.

And just kind of being aware that this isn't your child being, you know, defiant. It just takes more time and practice.

Tiffany: Absolutely. And I do actually wanna add something else to that too. Just coming into mind, because I'm sure every single person has encountered a child melting down in a grocery store, and you see the parent frustrated, you see them stressed out— I want individuals to step back and just take a look at that situation, because if a child is on the spectrum, which you wouldn't visually be able to see, because you can't tell somebody is autistic just by looking at them, but they get overstimulated by the lights, the fluorescent lights in stores. All the sounds such as, like, the cart wheels, people dumping things into their carts, all of the conversations. They can even hyper hear the typing on the registers. They hear all of that at once. So it's no wonder that you see a lot of children having a moment in a store where they're crying and throwing a tantrum.

It's not necessarily because they're not getting what they want. It's not necessarily that they're spoiled and being little brats. They full on could be struggling and in pain from the intensity of those sounds. And if they're still young and unable to communicate, that's very difficult to explain to an adult that you are hurting when you're going into a place like that. So I would love for society in general to just have more patience with parents.

Let them know that it is okay, that they're doing a good job, especially if you can see that they're very distressed and stressed out about the situation, because it's embarrassing. I mean, I don't know a parent that wouldn't be embarrassed by their child having a meltdown, but I personally have actually sat down on the floor in a grocery store with my son just to calm him down, to get to his level and understand and let him know that I see that he's struggling. It's all it takes sometimes is just to be aware and accept where they're at in that given moment and understand a typical thing and these parents are really trying. So I just wanted to add that in.

Whitney: Great point.

Tiffany: Yes.

Russell: Whitney, you mentioned adaptive behaviors. Can you talk about what that is exactly and kind of, yeah, what those are?

Whitney: Sure. So adaptive behaviors are really just kind of like your daily living skills.

So things like... and it— those these change with age. So when kids are young, it's things like what Tiffany was talking about with kids having to put on shoes, getting dressed, brushing teeth. And as you get older, those things shift. It's about, like, hygiene and putting on deodorant and brushing hair. And so a lot of kids and adult well, hopefully, by adults, you've kind of worked on these skills, but it still can be very challenging for adults, some of it adapted, just those daily living skills.

So even if they are, you know, holding down a very successful job and doing very well in school or whatever it is, some of those day-to-day things, like as simple as brushing our teeth, showering, just doesn't happen quite so easily and so seamlessly. And so it just requires prompting and reminders and kind of working on a sort of system to help encourage those behaviors. So again, individuals on the autism spectrum certainly are able to do those skills a lot of times. It's just a matter of working on them and kind of breaking them down and just practicing more.

Russell: So with adaptive behaviors, what would that look like socially? Like, I've— I don't know a lot about autism, but I know that sometimes, people with autism will try to... like, they'll think about social situations in a different way than people typically would, just so that they can, like, communicate more effectively with people.

Whitney: So I think with the adaptive skills being more like the daily living skills, I guess the only social impact that I could think of is just that that does become an issue. Right? As you become a teenager, or even young kids, they become very aware of how other people are dressed or what... You know, how you're brushing you hair. If, you know, you have stinky breath, the kid's gonna say, "oh, you have stinky breath."

And then other kids are feeling badly, and then they go from there on. They're gonna brush their teeth. Whereas for kids on the autism spectrum, hearing that from somebody else may be less impactful, and they're gonna kinda keep doing what works best for them. And so I think where it might impact social skills is just that some of the social... Kind of like the expectations for what we do independently. Also, I guess, interest.

Sometimes kids can have more, like, are interested in what they're interested, like what Tiffany was saying, and maybe not necessarily what the rest of their peers are interested in. I would say that's, to some extent, an adaptive behavior. So I think it's just that you cannot be receiving some of the social cues and then modifying your behavior accordingly, which, I guess, could cause some social issues.

Russell: Okay. What are some co occurring—

Melissa: Tiffany, do you have something you wanted to add?

Tiffany: Oh, yeah.

Melissa: I didn't know, but it looked you were about to say something. Sorry.

Tiffany: Yeah, no problem. The only thing that I really kinda wanna add to that too is maybe it's not really that the individual doesn't want to shower. It very well could be that they have a sensory issue with the water. Heat, just the feeling of a shower on their skin could make them feel like bugs or something that's crawling on them, something that a neurotypical person doesn't experience. So it's not always just them just trying to be defiant in the the world of hygiene.

It's just the fact that, like, the way to do it is not comfortable for them. So they do have to find a a different way, like a sponge bath with a washcloth or something that they can clean their skin that way versus having water streaming on them. But those are, once again, things that we don't really think about when you're neurotypical. You're like, okay. Get in the shower.

Take a shower or sit in the tub. The temperature of the water just because, you know, like in a tub, it starts out warm, gets cold. That can be very off-putting to an individual on the spectrum, especially if they've got sensory issues. So it's not like... It's not necessarily just an avoidance thing. It's just sometimes your sensory... Just it overloads on them, and it's just not comfortable.

Whitney: That's a great point. And that's true of so many adaptive behaviors. Brushing teeth can be challenging for kids on the specturm, right? Like, hair brushing.

Even potty training requires the toilet flushing, which is really loud and a lot of kids don't wanna do. So I think that's, like, a huge point to mention. So I'm glad you brought that up, Tiffany, for sure.

Tiffany: Absolutely.

Russell: Yeah, Those are some things that I haven't thought about before. So I think it's really cool to learn more about what other people's experiences are like. What are some co-occurring conditions that can happen alongside autism?

Whitney: I think the most common comorbidities would be ADHD and anxiety. So there are many, many individuals on the autism spectrum that have challenges with sustaining attention and with what we call executive functions, which are similar to challenges that we see with ADHD.

And for a lot of individuals on the autism spectrum, I would say the executive dysfunction and the executive function challenges could be some of the most impairing. Certainly, we see elevated anxiety and depression in individuals on the autism spectrum. I mean, there's many other things that, of course, could overlap, but I would say mood disorders and ADHD are probably the most common comorbidities.

Russell: What training is available for people who have some of these difficulties? Especially with, like, considering that they may also have ADHD?

Whitney: Sure. So I think, you know, we approach a lot of the skill-buildingness for individuals on the autism spectrum the same way we would if a child wasn't, or an individual wasn't on the autism spectrum. So, certainly, sometimes medication can be helpful. For children in the school setting, bringing in some kind of special education support, whether that's certain accommodations in the classroom, like use of headphones or intervention if they need some assistance with certain things, is critical. If an individual wanted to kind of work on some of these skills on their own, there's many books on executive functions and anxiety and depression.

There's some great websites. I often refer families to websites. There's one called socialthinking.com, which is really great at teaching... kind of social awareness and mental flexibility. There's another website called "Unstuck and on Target," and that works on kinda teaching parents and individuals the skills needed for executive functions. So that can be a great website.

Sometimes I think it's helpful to bring in a professional that's not yourself trying to do it independently or a parent. So for executive functions, there are executive function coaches out there. There are different, like, evidence-based programs to kinda help develop some executive function skills for mood disorders. I think for kids on the autism spectrum, a lot of times research supports the use of cognitive behavioral therapy. So working with a psychologist or doing some skill building can be helpful, or a therapist in the community.

Are there any other specific resources, Tiffany, that you think we should mention?

Tiffany: The only other thing that I think would be helpful just when it comes to, like, counseling and dealing with autism: people don't seem to understand that there is a website actually out there called, psychologytoday.com, and you can search by what you're struggling with. So autism or ADHD or something, and it will filter out all the providers in your area that are accepting new patients, what kind of insurance they have, and a lot of them are telehealth now ever since COVID hit.

So, it's something that you can do in the comfort of your own home, especially if you have social anxiety about going out in public and being vulnerable just in an unfamiliar environment. Sometimes it's better just to be at home. But it is a very useful tool, and it's something I refer out a lot because there's a lot of people that just need that extra counseling with their anxiety and depression and other factors that they're just dealing with on a daily.

Melisa: (coughs) Sorry. Excuse me. Are there some other... Oh, wait. Are there any unique challenges or opportunities, there could be opportunities too, for individuals with autism in Idaho?

Tiffany: So yes. Honestly, the the biggest challenges that Idaho in general is having is just the lack of providers ready to do the diagnosis. A lot of them are just not comfortable with the ADOS program or they don't feel like they have the educational background about autism.

So they refer out to those who are known to do the diagnostics, and those wait times can be extensive, the same with any services in the area. A lot of the time, the therapy that you're sent to, like ABA therapy, OT, speech therapy, physical therapy, feeding therapy, those wait times can be 9 months to 2 years, and that's after a diagnosis. And so it is a very big struggle. When people first reach out to me a lot of the time, I'm like, just call them all.

Get on those lists. Just get on them. Even if you don't have your diagnosis yet, say that you're in the process of it, get on the list because all you're gonna be doing is eating up that time while you're waiting for a diagnosis. And it's unfortunate because there are so many families and individuals out there that really do need those supports, but they struggle. So we try to provide at-home resources, and I did see that there are quite a few providers in Eastern Idaho and Idaho Falls area that do provide, like, the occupational therapy and the speech therapy and ABA even for adults, which is actually quite rare because there's really not a lot of providers out there that do adult services when they're they're struggling with autism.

And then, like, what I would say needs to change and what would be very beneficial to the community is just the community having a little bit more patience with these individuals and families. They are struggling and trying their best, a lot of them, and they just don't have the resources available right then and there. And something that we used to say back in the day was it takes a village to raise a child. Well, our village has definitely shrunk. We don't have the supports like we did before.

Trusting your neighbors is not such a thing anymore. Having your family live nearby is not such a thing anymore. So just having a little bit more grace towards these individuals will make the world of difference and just make it a little bit easier to to go about life.

Russell: Yeah, I think that's great mentioning just having a bit more patience with the people in our community. I think that's... I think that's amazing, and I wanna work harder at that. What are some misconceptions about autism?

Tiffany: Oh, I could go on and on about this. I really could.

Some big ones are they can't think for themselves. They can't function. They don't know how to make decisions on their own. They're not reliable with their day-to-day lives, and that they basically don't have choices, which is absolutely incorrect. We just need to be able to provide them the tools to be able to make those decisions appropriately for them.

So something like... It's... You learn it in in elementary school. You learn how you learn, basically. So are you visual? Are you hands on? All of those.

You have to do the same thing if you're autistic. So if you need instead of having somebody give you a verbal to-do list or task list, making it in writing so they can visualize it and check it off. And one, it shows that they've accomplished something. Two, it keeps them on pace. And three, it gives them the entire breakdown of their expectations.

With doing that at home for simple tasks, doing jobs at schools, it makes a world of difference. These these individuals are brilliant, brilliant, and they're just not always given the opportunity to show it. And it's usually because people aren't willing to give them the opportunity, have the patience, let them think outside the box. There are so many times that I have experienced just talking with, like, our adult group with the things that they come up with, I would have never thought of. I just don't— my brain just doesn't think that way, and I think it's just fantastic that these people can come up with this stuff.

Like Elon Musk, for example, he is autistic and he's a genius. Like, I couldn't figure out rocket science, and I'm neurotypical. Right? Like, that is not my realm. But he has figured that out. Same with Steve Jobs, and they even said that Albert Einstein was probably on the spectrum, the way he thinks.

So I think that the world needs to give them more credit for what they do, honestly. There's a lot more inside their head than they may be able to communicate, but it's there.

Whitney: I also think... Sorry, one other thought. I meet a lot of families that conceptualize autism spectrum disorders as a child who's very... or an individual that is very impaired that will not be able to live independently or... I do also think we see the opposite where sometimes individuals think that every child on the autism spectrum has, you know, some social challenges, but is above average IQ.

And that's also— yes. That is very much the case for many kids on the autism spectrum, but that is not the case for every child or individual on the autism spectrum. And so just remembering that within the spectrum, there are so many different types of people, so many different intellectual levels, language levels. It's just a huge, huge spectrum of people just like any other group of individuals.

Tiffany: Absolutely.

And, honestly, my own son and my own experience— when he was diagnosed, he was nonverbal. I didn't know what his future was gonna look like. Was he gonna be able to go to school? Is he ever going to move out of my house? Like, those are the things that at that moment, I'm like, okay. What does my net future look like now? And it's changed so much in the last two years. He can talk now. He figures things out. He's super independent. He can dress himself.

All of these things where I was, like, basically doom and gloom because I'm like, what does this mean for me? He's not functioning at the age of a 3 year old. They actually told me he was functioning at the age of a 7 month year old. 7 month year old (laughs), 7 month old!

But he now is, like, acting his same age. It just took a while for those milestones to be reached. And honestly, kids on the spectrum, those milestones really aren't relevant. They are on their own time frame.

They do what they need to do, and they grow in their own time.

Melissa: Sorry. I just... All the... I had this thought of that it's so important to value all the different perspectives, like, in the world, because that's how we're gonna make the world a better place for everyone, like appreciating different perspectives. Sorry. This idea or possible question that maybe a kind of a misconception that we wanted to ask about is the idea of, like, can autism be outgrown or cured? Which we feel like that question comes from a place of misinformation and misunderstanding.

How can that question be harmful, and how can we kind of respond to that to shift that mindset?

Whitney: Sure. So autism spectrum disorder is considered like a lifelong diagnosis regardless of the age at which an individual is diagnosed. We can certainly see certain symptoms improve over time. We see lots of kids and individuals gain certain skills as they develop, but we don't... The autism spectrum disorder is not a diagnosis that kids outgrow.

I think that the harm... Well, I think there's a couple of things that are harmful when referring to autism as being able to have a cure or not have a cure. One is, like, to imply that the an individual on the autism spectrum needs to be cured implies that there's something wrong with that individual that needs to be fixed, which isn't the case. Right? Everybody has... Individuals on the autism spectrum may process information in a different way. They may view the world through a different lens, but that's true of every individual with or without any sort of... you know, so there's nothing that needs to be cured or or fixed.

I do think, though, if individuals kind of operate under the assumption that I don't have to, you know, seek any intervention and I would just outgrow some of these challenges, that may prevent them or inhibit families from seeking intervention and services that could really be helpful to their child and make development a lot smoother and life a lot easier. So I think that the harm for the actual individual is if it somehow prevents a family from moving forward with some sort of intervention.

Russell: What can we do as individuals to create more inclusive communities for everyone, but specifically for people with autism?

Whitney: I think... Kind of what we've already been touching upon generally, and then I'll provide some other specific ideas. But in general, right, we are all unique people.

We all have strengths and weaknesses, and that is true of individuals on the autism spectrum or that is true of individuals with any sort of diagnosis or no diagnosis. Right? So I think just to remember that for individuals on the autism spectrum, some of the social emotional pieces might be more challenging the same way that something else— math might be more challenging for another person. So just stepping back and remembering, we are all just people with our own learning profiles, and we just kind of embrace people for who they are. Diagnosis doesn't define an individual, and it doesn't change who an individual is.

It's just terminology we use for a set of symptoms. So I think that from, like, a general world view would make us a much more accepting place. I think there are specific things those schools and employers and organizations can do. So one thing like Tiffany mentioned earlier, individuals on the autism spectrum are often very sensitive to sensory input, bright lights that a lot of offices and schools have loud noises, large crowds, uniform materials... So I think, you know, just being really aware of creating calm work environments in schools, kind of like break rooms for kids that just need a few minutes to decompress, access to sensory rooms, which a lot of schools now have.

Being more flexible with what material and style of pants are acceptable for a school uniform or a work uniform is important. Individuals on the autism spectrum are often really routine-oriented. So I think really, you know, trying to keep a consistent schedule and giving individuals a heads up like, "hey. Tomorrow's gonna look a little bit different." Just so they have more time to prepare, knowing that that can be more anxiety provoking.

Also, something Tiffany touched upon is being really clear and direct with your task expectations and instructions. So individuals on the autism spectrum tend to have challenges with something called "theory of mind," which is like taking on another person's perspective. And so it can be more challenging for individuals on the autism spectrum to figure out, like, what you're expecting of them. And so just being really detailed and, you know, this is what this task should look like or... and teachers too for assignments. It needs to you know, the essay needs to include this number of paragraphs and this number of sentences, or providing people a template like an example.

This is what the end product should look like, so that there's a little bit more guidance and less pressure to figure out what you want from me. I think employers could really serve their employees well by ensuring that whatever insurance they provide covers research-based intervention for kids on the autism spectrum. That can be a huge barrier, and for making movement forward on that. But I would still say that there are still some insurance providers that will not cover certain research-based early intervention or intervention. And then for schools, for children that are enrolled in schools, I think that making sure that they have access to different accommodations or interventions are important so that teachers learn how best to work with the child.

That's usually accomplished through something called an individualized education plan, or a 504 plan. I'm not sure if that came up during your literacy podcast, but that is an important thing for parents to kind of research or educate themselves about and and know that they have access to if their children do have a diagnosis.

Melissa: Sorry. I was listening, and I was like, that's really cool. That's all really helpful information.

And I love that it's at every level, like, being considerate of kids and adults, and every place of business could think about, "oh, this is gonna affect a group of people in a negative way." It's really not— maybe that aspect of the lighting or the sound or the environment isn't that necessary to be there. We don't need to have this here, or we should have this here because it could help some people. That was kind of vague, but yeah.

Whitney: It's true. And some of those things are so easy to modify. Like, my daughter at school wears uniforms, and we had to have a whole meeting about, like, just... You know, as long as they're solid colors. Like, it's okay if they're sweat pants. Like, do we really need them to be in the, you know, the button up?

Like, it's such a small thing, but even just having a conversation and kind of alerting people to, hey. This is an easy modification that could drastically improve an individual's quality of life. The morning routine at home, like, there's just so much benefit to just listening and and tweaking things as is helpful to people knowing that everybody's so different.

Melissa: What progress have we made? So we've talked about things we can do— has there been progress made in creating a more inclusive world and more inclusive communities?

Tiffany: Yes. Honestly, it's definitely becoming more of a thing. People are more aware. Examples of that: Walmart now has a specific time of day that they have sensory shopping available.

And it's across the world that they do this. They make sure the lights are dim. There's not, like, loud music going on in the background. Everything that you could think of that would overstimulate somebody in a grocery store, they pretty much have thought of and considered during that time, right? So it makes shopping easier for them.

Regal Cinemas, those movie theaters are top of the line right now. They've got this thing called "My Way," and they provide a sensory movie— of all the movies that are showing— so it doesn't matter how old you are or how young you are, they just make it so that showing is available for sensory needs. So the sound is not so loud. They leave the lights on dim, so it's not completely blacked out so you can navigate and not have depth perception messed up.

You're allowed to talk during it and obviously not loudly if possible, but, like, they understand that that is a process for a lot of individuals. It's talking about what they're seeing. So there's a lot of people out there that are really recognizing this, and businesses that are trying to help, but there needs to be more. That's for sure. Even your local swimming pools, having a sensory swim so you don't have that many people in the pool, or you don't have splashing, don't have loud music, don't have announcements, just so people can enjoy swimming.

It's just something that you don't think about on your daily today that it could affect somebody's life that much, and it's something they should be able to enjoy. I mean, who doesn't love swimming? Right? Unless, of course, you don't. (Laughs) Unless, of course, you don't.

But, I'm trying to think what another really good one is. The other thing is bullying in school. Unfortunately, autistic individuals are very highly likely to be bullied in school because they don't fit in. They're doing different things. Some of them aren't even potty trained yet, and their peers see that they've got, like, a Depend diaper on or a Pull Up diaper on. That leads to bullying, and it's just unacceptable.

So it may not be so much getting these children that are on the spectrum to fit in, but I think it'd be a better world if the neurotypical families taught their children to be inclusive, to not pick on people because they're different. Because someday, it could be them. I mean, you can get into a car accident and become disabled yourself. So take it as it is, but be thankful that you don't have those issues and be very polite and understanding to these other kids. Because, unfortunately, when it comes to bullying, the suicide rates of individuals on the spectrum is quite high.

They just don't fit in. They don't wanna keep trying to navigate. Everything they do is wrong. It's just— it's one thing after another, and it spirals out of control. So, having some grace is definitely— if you can take anything away from this, have some grace.

Let's put it that way.

Russell: Autism acceptance month used to be autism awareness month. Can we talk about why that change was made and kind of the impact that that has had?

Tiffany: Absolutely. So it did change.

There aren't very many people in this world that do not know of autism. They are aware of it. Now the time has come to accept it, to stop trying to put these individuals into a box, basically. You... They don't need to be exactly like everybody else in the world. If they think differently, perfect.

We need unique individuals in this world; accept them for who they are. Accept them for what they like and how they function. As long as it's not harming anybody, including themselves, let them be. So we are very pro accepting these individuals. It's been a struggle for years and years of people being like, "oh, well, they're autistic. Well, let's try and get them to be like us."

Why? Like, what what purpose does that serve? I think that the uniqueness of these individuals is something that should be celebrated, and that if you just take the time to actually have a conversation or listen or be around them, watch what they do, your mind will be blown. Trying to get all these individuals into, like, that box like I was describing is extremely harmful for them. And that's why a lot of people that are on the spectrum, especially in adults, don't really want a lot to do with the techniques and and therapies that are going on right now because back in the day, ABA therapy was very much a rigid training exercise that was not helpful to the individual.

Things have changed now. It's more of a compassion play therapy versus, "oh, good. You did this. Let's have a treat." They don't really do that any longer.

And if they do, you need to find a different ABA center because that's inaccurate. But just having that the ability to accept an individual for who they are, because you would wanna be accepted for your likes and needs and what you want in life. It's no different for an individual on the spectrum, so we don't need to be aware anymore. We just need to accept.

Whitney: And just to jump onto that: one other thing, and I'm sure you guys have heard this expression, but I remember learning it when I was in grad school at some point.

Like, when you've met one individual on the autism spectrum, you have met one individual on the autism spectrum. And so to try to group people together as one type of thing or to expect that every person you meet on the autism spectrum is gonna have a hard time making eye contact or that... That's just not the case. And so just to, again, remember that we're talking about an entire group of people, with all very unique experiences and challenges and strength.

Melissa: Are there specific opportunities or programs, resources for individuals with autism in Eastern Idaho that you guys know of?

Tiffany: There are.

So there's a lot of resources, actually, but I do have some that I was researching prior to doing this just so I had some for you. So the Learning Center for Adults, Journeys for Adult Center, Innovative Testing Center, Access Point, Riverside Service Group, Inspire Human Services, Peak Behavioral Services, Celebration Speech, Idaho Falls Occupational Therapy, and Ascend Mental Health are just to name a few. There are significant amounts in the Southern Idaho and Eastern Idaho area. The issue that a lot of individuals and parents have is you don't know what you're looking for. You can verbalize what you're needing help with, but you don't know exactly what that term is a lot of times when you're looking for it.

So we are always available. I— not only do we have a directory online... autismsocietyofidaho.org is our our directory, so people can go in there and search by a keyword, like "speech problem" or "can't talk." And any term that you could think of as a parent that you just don't know what the actual term is for, you can type that in and it will pop up the resources in the area by the region, ZIP code, you name it. I am always adding to that, so as more pop up, I add to it.

But I'm always available as well. So people can always reach out to me, and I will help them navigate the system from prediagnosis to end of life care with their ABLE accounts, their state planning. You name it, I'm there. I've been there, and I do not want any family to ever encounter what I did when my son was diagnosed. You don't wanna be lost, and I guarantee you, you're not alone.

So anything you could think of that that you need, Medicaid navigating, social security, legal advocate, criminal advocates, which I have been dealing with a lot in the state of Idaho, I'm here, so they're not alone. Reaching out to Autism Society of Idaho is the first and foremost thing that I would recommend because we can guide you all the way through it.

Whitney: And I will say, like, what a huge resource the Office of the Society of Idaho is. Like, because if Tiffany is not aware of if there's some of the questions she can't answer, she never will bounce you to somebody else or say, I have no idea.

Like, she will scour the earth to figure out the answers or the resources, whether that's, you know, across the country. So I do think, like, any... I refer all of my clients. So if this is who you're gonna call, like, I'm here, but you know, the Autism Society of Idaho is really a huge, huge resource for Idaho. And, again, if it's something that isn't a clear-cut answer, then the research will be done and and the correct people will be contacted to figure out what the next best step is.

Melissa: Is there— oh, go ahead. Sorry, Russell.

Russell: Yeah. No. I was just gonna say, is there anything else that we missed? Anything else that you think we need to hit on?

Tiffany: The only other thing I think I might add, which kind of tags into what I'm doing is I'm working with Boise State University right now to create an adult diversion program. It's vital for the state. So even if it's just like, say you're in mental health court because something happens. Say you you have a meltdown in public, and you get arrested because of that, because you're causing a scene in public. Instead of putting you into a program in a system that was built for individuals with developmental disabilities or delays, the adult diversion program will have those supports and therapies in it that are better fit and made for individuals that struggle in life.

Corrective action based on their behavioral needs and their abilities, to comprehend what's going on, something that's extremely vital. So, I think that those are the kinds of things people don't really think about on your daily because it doesn't affect you until you're there. So, yes, we need to have one of those available as well, but we're working on it.

Melissa: Thank you. Thank you for all that you guys shared and what you've taught us today. Like, a new perspective is good, so...

Tiffany: Absolutely. And if anybody ever has any questions, like Whitney and I were saying, they can reach out to us at any time. I am very quick to respond because I don't leave families hanging. Even if I don't have the answer, I'm gonna let you know I don't have the answer, but I'm gonna find it.

So, yeah, no one's alone in this.

Whitney: And thank you guys so much for having us and for, you know, increasing awareness and acceptance. It's such an important piece that, you know, organizations and people really kind of all work together to expand our knowledge and acceptance. So thank you.

Russell: Absolutely. Yeah. Thanks for coming on Tiffany and Whitney. Thanks for joining us for this episode of the Riverbend Awareness Project. If you enjoy what we're doing here, give us a rating on Spotify or Apple Podcasts. And you could share this episode with friends and family.

If you want to know about all future episodes, go ahead and subscribe.

Melissa: You can send feedback at [e-mail]. We're super grateful for our sponsor, Melaleuca, for making this episode possible today. And we wanna thank Tiffany and Whitney for talking to us today about autism. Thanks for listening, and we'll see you next time on the Riverbend Awareness Project.

Disclaimer: The views and opinions expressed in this podcast episode are solely those of the individuals participating and do not necessarily reflect the views or opinions of Riverbend Communications or the Riverbend Awareness Project, its affiliates, or its employees. It is important to note that the discussion presented is for informational purposes only and should not be construed as medical advice. Listeners are encouraged to consult with qualified health care professionals for any medical concerns or decisions. The Riverbend Awareness Project is a product of Riverbend Communications.