Podcast: Navigating Autism Through Childhood Years

Episode Transcript

Jenn: Welcome to Mindful Things.

The Mindful Things podcast is brought to you by the Deconstructing Stigma team at McLean Hospital. You can help us change attitudes about mental health by visiting deconstructingstigma.org. Now on to the show.

Hello folks. Good morning, good afternoon or good evening to you. And thank you so much for joining us today, wherever you’re joining us from, to talk all about navigating autism spectrum disorders throughout childhood.

I’m Jenn Kearney. I am a digital communications manager for McLean Hospital, and I am joined today by the lovely Laura Mead. And autism spectrum disorder, we’ll be referring to it occasionally throughout the session as ASD.

It’s a very common developmental disability. It actually impacts approximately one in 54 children. That was the, I think, the most recent statistic I was able to find.

So, what’s true for one child within that spectrum may not actually be true for another because, like a real spectrum, it kind of varies in its severity. But ASD is a lifelong condition where its social, communicative, behavioral challenges and needs could vary as time progresses.

So in our chat today, Laura and I are going to talk about examples of signs and symptoms of autism spectrum disorder in kids and teens.

We’ll talk about ways to support the needs of our loved ones as they start to age out of childhood and how we can improve quality of life, both for the kids and teens with ASD that we’re looking after as well as ourselves, because a lot of times, caretakers end up on the back burner and that is not something that should continue to happen.

So if you are unfamiliar with her, I have the distinct pleasure of introducing you to her today. Laura Mead is a teacher and administrator with over 20 years of experience in special education.

She is currently the educational administrator at Pathways Academy, which is McLean Hospital’s school for students on the autism spectrum with and without co-occurring psychiatric diagnoses.

Her background is in psychology, education and art, and she has taught elementary and middle school special education to students with social, emotional and behavioral challenges in both private and public school settings.

You have such a great biography that I’m almost, I have a hard time getting it all out. So Laura, I just want to say, thank you so much for joining today. I have talked to you before about ASD, and I think it’s one of the most fascinating topics because you are so well versed and so passionate.

And I just want to get the conversation started by asking you, what are autism spectrum disorders?

Laura: Sure. And thank you for having me again. It’s such an honor, it really is. If you hear background noise, I apologize. There’s no private space in our school. There’s just a lot of child movement.

So, if we look at autism spectrum disorders, it is kind of an umbrella term that is talking about individuals who meet a certain set of criteria. And it’s kind of laid out within the diagnostic and statistical manual, five I believe is the most recent.

And in order to be diagnosed with an autism spectrum disorder, you really need to have a certain amount of impairment or have some significant impact in terms of communication, social interaction and some potential other areas that can be really impactful in daily living.

And I think we think of the terms Asperger syndrome, we think of PDD NOS, which is pervasive developmental disorder, not otherwise specified. Sometimes we’ll hear of social pragmatic communication disorder, which is a little bit newer.

We’ll hear of autism, you’ll hear high functioning autism, you’ll hear levels within, you know, autism level one, level two. And you might hear about someone more deeply affected on the spectrum.

There are so many kind of different terms. And the terminology has changed over time. And as we kind of, morphed over time in terms of diagnostic criteria or what we’re calling things, sometimes things become more clear and sometimes they become more confusing.

So, in the past there was the diagnosis of autism. There was a diagnosis of Asperger’s syndrome, which was similar to autism, but had some different pieces to it and might be what some people think of as a high functioning autism.

So, you might have some challenges with social interaction, but chances are with Asperger’s syndrome you might not have necessarily any intellectual disability. Whereas if you had a diagnosis of autism, there were real specific qualifications that went with that.

And PDD NOS, you would get that diagnosis if you met some of the qualifications but not all. I think it might be 2013, it changed to just a general autism spectrum disorders.

And one of the better ways to think about it is I find, there’s a student outside my window, two students, it’s as if they’re playing old timey, like they have whiffle ball bats, and they’re hitting a log of wood as if they’re old time lumberjacks. It’s funny and distracting.

But this is why I love working at a school ‘cause you can’t make this stuff up. They’re doing it to be funny. They, sorry. Where was I?

Back in 2013, I believe, when the term Asperger’s was kind of put aside and it’s now just autism spectrum disorders, we typically will say, if we want to describe someone that was previously identified with Asperger’s syndrome, as someone with an Asperger style presentation.

You don’t really hear the PDD NOS component, the pervasive developmental disability. You kind of just hear the autism component. And if you have someone that isn’t, I can get into the actual qualifications to meet the, to be given the diagnosis.

You don’t have some of the components of autism, but you do have that social pragmatic impairment. That’s when you might see a diagnosis of social pragmatic communication disorder.

So, would it help if I kind of just went through, what is the actual diagnosis? And I have a few notes only because there’s no-

Jenn: That would be helpful for sure. Also, like, some of the common signs and symptoms of autism spectrum disorders would be awesome.

Laura: Excellent. In order to have a diagnosis of autism, the individual, and I’m tempted to say child, but in essence, you can have an autism diagnosis as an adult.

Typically, the symptoms are presenting before age three, but they might not be recognized, especially for adults of my age today, chances are those signs might not have been recognized and I’ll talk about what they are.

In my field, we see a lot of children diagnosed with autism ‘cause we’re working with students, student age people. But an individual has to have a couple persistent deficits in each of the three areas of social communication and interaction and at least two types of restrictive repetitive behaviors.

And I think, when we talk about social pragmatic communication disorder, there isn’t that repetitive, you know, intensive interest or restrictive interest repetitive behaviors. So, persistent deficits in each of the three social communication areas and two out of four types of restricted repetitive behaviors.

So, when we’re looking at these three types of social communication, we’re talking about social-emotional reciprocity, nonverbal communication that relate to social interaction, and the ability to develop, maintain and understand relationships. So, you need to have some impacted, you have to be impacted in all three of those.

So social-emotional reciprocity, that might be what we typically think of, when someone’s struggling with social skills, not knowing how to start a conversation, not knowing how to join, how to engage in a conversation or talking maybe only on your preferred interest, having a flat affect, which is really common on the spectrum.

And a lot of people who don’t have an understanding of autism might think that that flat affect. And what I mean by that is, a face that really isn’t reflecting emotion, kind of the face we’d all make when just, staring at a window or watching a commercial that’s, you know, kind of boring. Just a kind of a flat look.

Not smiling, not grimacing, anything like that. It can be assumed sometimes by people, oh, that person isn’t feeling emotion or doesn’t have any emotion. And that’s really not the case.

Flat affect is just that you are not showing that emotion in a way that’s expected. But maybe you are showing it by flapping your hands if you have autism. Maybe you’re showing it in other ways.

But it’s just not that typical expected way that we see on people’s faces. So, that’s the social-emotional reciprocity. The second piece, the deficits in nonverbal communication behaviors that are used for social interactions. These can range from kind of, poorly integrated verbal and nonverbal communication.

So for the average, average “neurotypical” person, when we’re making a point, our hands move with the point and there’s things just kind of happen naturally. Whereas if you have someone on the spectrum and not always, it might not.

This is just one example of something that might be a challenge. But maybe they aren’t using their hands or they have to think about, you might have someone with autism who is a college student and they’re in a public speaking class. And the professor says, “Use your hands to emphasize points.”

And it’s not just coming. And maybe it doesn’t come for everyone anyway, but to kind of have to think about doing that. Lack of eye contact, that can be really common with autism. And I have kind of, a strong feeling about that.

When I was first learning about autism, when I was in graduate school 20 years ago, I remember people talking about engaging with the child with autism and they kept saying, “Look at me, look at me.”

I felt a certain amount of resistance to that because the focus was solely on the look at me, look at me. And we’ve come to find, research has shown that people with autism spectrum disorders have trouble concentrating.

When they’re taking in that visual information, it feels uncomfortable, possibly like if we stare too long at someone. It’s like, you can’t force me to stare at someone. It’s too uncomfortable. And that might be a little bit of what it’s like.

So maybe lack of eye contact, different body language, not expected body language, not picking up on gestures or again, that lack of affect. And then, the third piece, deficits in developing or maintaining, keeping up, understanding relationships.

So, that can range from how we adjust our behavior. We might talk different to a baby than we do, you know, a peer than we do to our boss. And maybe someone on the spectrum, especially a child who hasn’t been taught this might not pick up that.

People tend to talk with a higher voice when they talk to babies or they might tend to talk, you know, just a little more formally when talking to an older person.

Often you hear of children with an Asperger’s profile, with an autism spectrum diagnosis as called little professors, referred to as little professors where they use this kind of pedantic speech that sounds like they might as well be teaching a college course because they’re not adapting their speech to the fact that they’re talking to another 10-year-old peer.

They’re using the formal words and kind of formal language. Sometimes there’s that difficulty in sharing imaginative play, or sometimes there’s no interest in peers. I think that’s part of where the term autism came from.

And from my experience I have, most of the students I work with have this kind of Asperger’s profile. And I have yet to come across someone with that presentation that isn’t interested in social interaction and peers.

It might seem like they’re not interested because they’re only talking about Thomas the Tank Engine, and they’re just focusing on their own interest.

But I think you will run into situations with individuals who have a diagnosis of autism who may just seem really internally focused or focused on sensory behaviors and aren’t seemingly quite as open to interaction with peers.

So, those are those social areas where, you know, you need to be impacted in those areas to receive the diagnosis. And then, you need to have, there’s four different restricted repetitive stereotyped behaviors. And you need at least two of these.

So, there’s literally the repetitive motor movements, use of objects or speech. And so, that could be seen in the common example of lining toys up. Instead of playing with cars, lining them up, or maybe playing with the matchbox cars, but you’re only focused on watching the wheels real close.

There’s often I feel like a sensory component or the need for setting things up in a way that makes sense. The kind of aspects we sometimes see, especially with younger children of repeating the same phrase over and over or repeating a phrase you’ve heard, which is called echolalia.

And it is just something where it kind of is, it clicks and then it becomes almost a bit of a stem behavior in itself, just repeating that. Then there is the, you know, just flipping objects or I think also sometimes, flipping things in light or taking something that’s shiny.

And again, it has a bit of a sensory feel to it, but it’s a focus on that over and over and over. Not just once, “Oh, that looks pretty,” but kind of seeking that behavior again and again.

There’s also insistence on sameness, really being inflexible with change and adhering to, if the way that you get ready for bed is, you brush your teeth, you put on your pajamas and then you go to bed, really resisting any switch up in that.

And again, that’s just one example. That might not be an issue for anyone. But it’s just one example of kind of struggling with that flexibility and that adherence to routine. The need to take the same route to school age each day, and kind of getting upset if the bus takes a different route.

Then there’s the highly restricted fixed interests where you will see someone that is really, only interested in a couple things. And we see this at school a lot with younger students who struggle to access learning on typical topics, ‘cause they’re just not interesting to them.

And so, what we try to do is really adapt learning. And if someone only likes trains and that’s really their focus, we try to see what math can we do about trains. What, you know, kind of life skills, community skills can we do about trains? What English can we do involving stories about trains?

We’ve had a lot of success over time, increasing the repertoire of interests with our students. But it takes time and you have to go slow and you got to kind of use trains as your, or whatever it might be, as your lead in.

Then lastly, I’m doing so much talking. I apologize. Lastly, that hyper reactivity to sensory input, or kind of mentioned it before, an unusual interest in certain sensory aspects of life, of the environment.

So, it might be a real intolerance to a tag in the shirt. And these are things we can probably all relate to. And I think it is one of the reasons why it’s a little hard sometimes to relate to someone with ASD, their sensory needs, because we all experience different sensory needs but we manage them.

If we have a generally neurotypical brain and it’s so hard to really say, well, this is neurotypical because we’re all in so many different ways diverse. But, you know, if you take this kind of average, middle of the road, brain wiring, we’ve all had an itchy tag, but we’ve managed to get through a meeting with it.

Whereas for an eight year old with autism, it’s just different. We can’t just expect them to deal with it. So, it might be something like an itchy tag, with a feeling of a seam on a sock, for some kids it’s shoes at all or for some adults as well.

It might be someone that feels comfortable in shorts in the winter, ‘cause they get hot really easily. It might be sniffing things, always trying to get a sense of how different things smell. Things that we don’t think smell at all, but maybe someone could actually smell that. Visual fascination with things like wheels or pinwheels.

So, if you can have a few of those areas impacted and you have a component of each of those social areas impacted, then you might meet the diagnosis. I do have some other things I’d like to share though.

In general, the symptoms are present before age three, but again, they’re not always caught. And it’s not every symptom. It’s not every single person with ASD has the same set of symptoms.

It’s a spectrum in terms of, a nice way to think about it is less of a linear spectrum and more of a, like a spherical or a circular spectrum where all around the outside of the circle are the different components, social language, pragmatic language, sensory experiences, fine motor skills, gross motor skills.

And you just kind of keep going around the outside of that wheel with all the different components that might be affected by ASD. And for some people, certain parts, maybe the sensory piece isn’t present at all, but the motor skills piece is really affected or vice versa.

And then, just the last piece that these challenges aren’t better explained by a different diagnosis, such as intellectual disability or maybe a global developmental delay.

So, I can also talk again, I have talking for so long right now, but to some specific things at different ages that people might see in their child, I think sometimes that’s interesting.

Jenn: I think that would be helpful ‘cause I know not only have you worked with both elementary, middle school age kids, I’m sure even older than that.

But also thinking about a child who might use flapping as a way to express enthusiasm around something versus the college student who doesn’t understand necessarily the, like, talking with your hands at the same time.

Obviously, those are two different examples. But yeah, any examples of how symptoms may actually evolve as kids age or how they present would be terrific?

Laura: Sure, sure. The hand flapping is such a common piece. It’s not always present and it’s something that you might see when someone is excited, when they’re uncomfortable, when they’re bored.

So there’s not like one single, and you might hear the term stim, it’s kind of short for stimulation where we are all just, in our daily lives, even me sitting in this chair right now, I lean, I move a little bit.

At some point I usually get up and sit on my one leg. And then, after about three minutes, I’m like, why did I do that? This is so uncomfortable. So I move around, I pull the leg out. It’s half asleep. I shake it.

We’re all doing this kind of movement and meeting our own sensory needs. If a room is too bright, we’ll kind of pull down the shade a bit. Or if there’s not enough light to see, we’ll turn a light on.

Sometimes we chew gum, sometimes we hum, sometimes we drink coffee so we can feel more awake or, you know, we’re trying to slog through a boring assignment of some sort and we’re like trying to have a little bit of happiness, you know, some flavored coffee while we’re doing it.

So, when we see someone stim, and it might be moving their hands in a certain way, sometimes it’s in front of the light, sometimes it is just a repetitive motion that, it doesn’t have to be kind of up by someone’s face.

But I think often it is, because the interplay of light is usually really interesting. It’s someone trying to meet their sensory needs. And so, that falls under that category of restrictive or repetitive behaviors.

The rocking of a body, I think this is something you think of, as stereotypical rocking back and forth in an autism presentation. And it really is soothing I think, for a lot of people.

If you are, I think we’ve probably all rocked back and forth and not even known it like, watching a sports game as we’re waiting to see if they’re going to make, you know, the shot or the field goal.

Whatever it might be it’s really, probably something that we’ve all done in some way, but it’s just so much more present and repetitive, and kind of, at times when you wouldn’t expect it.

In terms of the age periods that you might see things, I think, and I don’t have this in my head because I don’t regularly work with this young of students, so I’m really not seeing it myself that much, but some things that are said, we have a baby that doesn’t make eye contact or keep eye contact.

And if that doesn’t respond to their name or a baby by the age of nine months, and, again, that’s not alarm bells, my child has autism, but there’s just a long list of things. And I like to find information on spectrumnews.org. It’s a nice resource.

The CDC has some good information. And so, these are just things that they list that might be a clue that there’s a delay, developmental delay.

And when you kind of take all those pieces together and the different delays, that might be where the doctor has, and typically, I know parents will come to their pediatrician with concerns. They might sometimes be referred to a developmental pediatrician or a child neurologist, maybe a child psychologist, psychiatrist.

An infant or a young child up to 12 months of age that doesn’t automatically play Patty Cake or wave to copy waving that you might see, that kind of interactive game. And again, it’s not a definite. But these are signs that that’s really pretty typical of development.

It might take some kids a little longer. Using few or no gestures by one year old. And just usually at that point, it might not even be like a copying game or a Patty Cake, but just a general pointing if they see something that they want to show you.

And that would be by 18 months, that’s pretty typical for that kind of joint visual attention where a child will point. Doesn’t notice if you are hurt or upset or, you know, crying, not that you expect your toddler to comfort you if you’re crying.

But you know, just if you imagine a game where you pretend to cry, I feel like for some reason we’ve all done this to a toddler like, “Oh,” and for them to just not notice and keep kind of going about their business.

A child that’s struggling to pretend to be something else or to play, to pretend they’re an animal and make a noise like an elephant or to play teacher or, you know, put on, I think of nursery school, I always used to play house and we put on these weird like, extra pajamas that the teacher had, which was strange.

And they weren’t hers but like in a toy chest. Well, they might have been hers. The idea of that imaginative play, shared imaginative play by age four, I think, it is something of a sign to look for.

And they also say a child that isn’t singing, dancing or acting for you by age five, so that kind of “Look at this. Look at this, Mommy,” when they do like a jump or they pretend something’s a magic wand or just that child-like imaginative flare.

And when I think of a child maybe with ASD, I think of someone who’s just more interested in potentially playing with their own items than interacting with the people around them at that young age.

Yeah. Let me see. I guess the other piece that we will see as kids get older is an interest in social interaction, but it might not look like an expected interest. We might see a struggle with having a lot of changes in their routine that seem really simple to the average adult, you know.

Just to say, “I know I said that we were going to stop and get ice cream after lunch, but we’re not going to be able to go until after dinner.” And it might appear like, you know, that’s a simple change. “I just need you to deal with it. And I got a lot going on today. We’ll still get the ice cream.”

But that change just kind of throws the person with autism. It can, especially a child for such a loop. At school, we’re really always trying to reflect changes in real time on the schedule.

So if, let’s say at 12:30, the student usually has art, but it’s for whatever reason changed, and it’s now group activity, we’re going to go either cross off art and write “group activity” or erase it and have them watch us do it and kind of narrate through that.

I think as kids get older, we see in general, kids being a little more tolerant of social gaffs and mishaps and awkwardness during the elementary years. But as kids start to get into sixth grade and hit the middle school years, kids are a little more cliquey.

And they’ve fine-tuned their social skills. And so, we see a lot of adolescents feel isolated and lonely, and a lot of times are reaching out and connecting via online scenarios. A lot of our students are involved with online gaming.

And it might be, kids might be doing it much before middle school but games like Roblox where you’re interacting with individuals and they have a pretty good setup where you can’t really give any personal information that, you know, it does hashtags and number of signs when you try to do anything that looks like an address or a name or anything like that.

So you’re engaging with real players, but everyone has a fake name and you’re racing cars around a track. But it’s still that engagement that kids are seeking. In school, I think we see a lot of kids do things that they think are funny to try to relate to other kids.

And it’s usually stuff that’s going to get them in trouble, not necessarily at Pathways but in public school. And often, it’s maybe something, you know, humorous happening between students.

And when the child with ASD goes to join, they make their comment, but it’s not quite as hidden or camouflaged. And they’re the one that the teacher then says, “You, to the principal’s office. I told you guys no more fooling around,” or whatever it is.

So kind of, lacking that social nuanced ability to be able to do things without the teachers seeing sometimes happens. We see even more common with young kids, but even with middle school kids, the putting hands over ears when things are loud or a bit of a quicker startle reflex.

And again, it’s so hard to relate to as a relatively neurotypical adult. I think, unless you’re an introvert, because then you probably don’t mention this other times but as an introvert, I am relatively averse to loud noise.

And I don’t like loud startling noises. I don’t like a general amount of noise. I need quiet. After a school day with a lot of noise, I need quiet. So, I think people that are sensitive to noise will get it. But if you have ASD chances are, your brain is wired differently.

You might have parts of your brain that are more connected than the average person. You might have different connections and sensory experiences. Your nervous system is reacting, bringing information in and it is louder for you.

So, it’s not just a matter of, “Oh, you’re just sensitive,” you know. “You’ll get used to it.” And there is a certain amount of, over time we do want to try to increase exposure to things, but that hands over the ears, it’s not being dramatic. It is louder.

The squinting in the sun. I think for high school kids we see a lot of anxiety over what the future holds, and kind of the idea of, “Oh, am I going to go to college? Am I going to live with my parents forever?” All those things that everyone balances. “Am I, you know, going to get a job?”

And wanting to fit in probably more so than ever before. I think it’s important to know autism is often not, ASD often not as easily noticed in girls. I think they do a lot of masking where they are able to pick up on what others are doing and they recognize.

And again, I’m making generalities, but there’s a certain amount of girls with ASD that just mask. And it somehow, a little bit seems to kind of, follow in line with the typical female trait of putting your own needs second.

And I hope I’m not making any enemies while doing that, but I just think of the moms and the caregivers who put themselves last. And now more than ever, dads as well. But it just seems like a female thing to put your own needs second. And I think there’s a piece of that in the masking.

But our male students also mask and then they’re exhausted from masking all day when they get home, so. I think the social awkwardness and the anxiety that goes with feeling awkward about not knowing how to get into a conversation, I think we’ve all felt it at a party where we don’t know anyone.

And just imagine that that’s how it feels even with your closest friends. I think that’s something that you just kind of see. In some ways it gets more challenging as individuals get older, but with more and more kind of direct instruction on that, then it gets easier.

But you do become more sensitive I think too, realizing that, “Oh, I’m different. I’m not joining the conversation like everyone else.” So hopefully, with skill building, you start to be more comfortable. And then, it’s a matter of the more you do it, the better you get at it.

Jenn: Exactly. I know one of the things that you have touched upon a lot is how symptoms appear differently for kids versus teens versus adolescents. You’ve discussed masking.

So, there’s obviously going to be some kids who grow up without a diagnosis and then may pursue it when they’re in their early 20s, realizing that, “Hey, I kind of, fit a little bit of this criteria.”

Does the diagnostic process look different depending on how old the person is seeking a diagnosis?

Laura: That’s a great question. It’s the same set of criteria. And I think it’s still going to involve looking back on the individual’s history. Did they struggle with this? It’s probably not new struggles for them.

So, it’s probably like, “Oh yeah, I did always have a hard time joining groups or knowing, you know, handling sensory experiences.” So I think the diagnostician will look at their past history and what’s been hard for them.

Maybe speak to parents or other people that have known that individual for a longer time than just the current. But at the same time, it’s really a similar set of circumstances and the same diagnostic criteria.

And it’s funny because you think about this wide, wide spectrum of ASD and some people will say, we’re all a little bit on the spectrum. And I think that’s true.

So, you have a lot of individuals who were never diagnosed, but when they see their child struggling and they seek help through professionals or are, you know, meeting with their school team to find out what might be going on.

And the child gets a diagnosis of autism or ASD. And the parent might be like, “You know what? This explains so much because I was struggling. I’ve struggled with these things my whole life.” But maybe not to the same extent that the child is.

And maybe it’s, I’ve heard it explained in a way that you just feel a little bit alien. Like everyone else gets it and you don’t get why they get it and you don’t get it.

I think I love to go back to the introvert-extrovert dynamic because I think that’s how, unless you’re perfectly equal in the middle, I think if you are naturally really introverted, you just don’t get how people can recharge by being with other people.

And if you’re really extroverted, it just doesn’t make sense why anyone would want to spend so much time by themselves? What good would that do? And so, if you could kind of think of it in terms of your own personality and things that don’t feel natural to you.

And just imagine that the world is only built for that style, it does give you a feeling like you have to pretend to be someone that you’re not because the you, that you are, you’re always being told, “Well, don’t do it that way. Don’t do it with, that with your hands. Make sure you sit up. Look at me when you talk to me.”

It’s like everything that’s natural to you is seemingly wrong. And so I’m a big proponent of supporting neurodiversity and really helping people understand we all have different brains.

And when you look at personality inventories, like the Myers-Briggs, and you, you know, you have someone who is more of the caretaker and someone who is the commander. These different components of, you know, if you take the test and find out what type of personality you are, if you put stock in that.

It’s just kind of good for us to remember that we are all really different and we’re a product of our biology of our wiring. And the world is wired for the average wiring. And so, it’s just so important to not try to eliminate or I don’t know.

We just always want individuals to be who they are and feel comfortable. And understand that the world might not be there yet in accepting that, you know, it’s okay to make movements with your hand, or if you, you know, get nervous and you keep, we all touch our hair, when we’re on Zoom.

We can’t help it. But if you just like, keep doing it and you can’t help it, to understand that, “Yeah, we’re all going through stuff, you know, and it’s okay.” Maybe withhold judgment just a little bit.

Jenn: I’m curious about, I know you’ve been in special education for over 20 years. You have to have seen plenty of kids go through rigorous amounts of therapy for autism spectrum disorders.

Have you found that the severity of ASD has changed with therapeutic options?

Laura: What a great question. It seems like in general, public education has kind of changed over time in how they address ASD and there, for the longest time was a, you know, you kind of pull everyone out that has special needs and educate them separately.

Then it was more of a, “Okay, if we can have students with their ‘neurotypical’ peers, we want to do that to the greatest extent possible.” And sometimes that gets pushed a little too far.

And the idea being co-taught classes, where you have one special ed teacher and one general ed teacher, those are the answer for everyone. And so, while pull out and having everyone do their classes separate wasn’t the answer, having all classes full inclusion, isn’t the answer, it has to be so individualized.

And so, maybe a student could do science and history with their peers, but maybe they do need to have separate instruction for math or something like that. So, the piece about public education, while it’s a little bit prone to trends, it seems like we are in a period now where applied behavioral analysis has been really over applied.

It seems to work really well for different subpopulations within autism. When you have a child who’s doing self-injurious behavior and is hitting their head over and over on a wall or hitting themselves over and over.

When you have an individual who isn’t able to verbalize and process in a social way, what they’re doing, and what’s another way they can let us know when they’re upset instead of hitting us.

That verbal ability to process sometimes means that, in my experience, this is just my opinion, but sometimes means that a rigid application of a point system might not be the best approach. And I don’t mean to paint all applied behavioral programs as point systems, but I think that’s what we think of, earning rewards, using point systems.

We’ve found that a lot of our students come to us having not had success in programs where applied behavioral principles have been a kind of, put in place and there’s been no flexibility. And a lot of our students just had ultimate meltdowns because they didn’t earn all their points in their morning classes.

And so, why try in the afternoon? And so, I think if you have a certain amount of anxiety and a certain amount of reflective ability, it might not be, if that approach isn’t working, it might be a sign that it really isn’t working. You know what I mean?

So I think in terms of, you asked about, you know, did severity and is it more of, I think what I’ve noticed in my role here at Pathways, in our, you know, area serving the Greater Boston area, what we’ve seen is just an over application of ABA principles, or maybe just a not done in a nuanced or flexible way that has actually caused kids to experience a lot more stress.

And that’s the severity to which, and then over the last couple of years, kids and families have been through so much. And we have a lot of kids coming to us that are refusing to go to school at all.

It started out just on certain days not wanting to go and then it just became every day not wanting to go. And that’s probably one of the biggest populations that we’re seeing right now. And I think that is just, it speaks to the disruption in learning that everyone went through during the pandemic.

And that it’s still disruptive, even when kids were coming back in hybrid form and back in person, it was just so hard to get used to. So, that’s a piece of the severity we are seeing now.

That and just kind of, over application of one approach seems to like really make things worse for some students, better for others. But my biggest takeaway is you always have to look at the individual child and determine, you know, and I do love a lot of components of applied behavioral analysis.

You do want to look at what happened before the behavior. You do want to look at what’s the function of the behavior. But we always want to understand that behavior is communication.

And as flexible adults, it’s our job to meet the child where they are in order to then be in their world with them and scaffold ways for them to grow from that world.

Jenn: Do you have any knowledge around toilet training children who are on the autism spectrum?

Laura: Oh, great question. I have to be honest with you, I do not. That’s not something I’ve gone through or had any involvement with. But I send my heart out to anyone going through it, and toilet training in general. I can’t even imagine.

Jenn: Not easy. Not easy at all. Similar to the point that you brought up earlier or points rather, of not requiring eye contact or teaching, like, math and English with references to trains so that the child is understanding it in a way that is registering with them.

What are some other ways that we can support and accept ASD characteristics?

Laura: I would say by withholding our judgment and recognizing that we’re, neurotypical people are kind of control freaks in our own way. We want things to be a certain way. We think that certain things are acceptable and other things are not.

And so society has over time kind of gone that way. It’s a natural human thing. That’s what sociology is all about, that you have certain expectations. And so just an amount of compassion for anyone who is not meeting the expectations in the moment.

I think for children, adolescents, and maybe even some young adults, older adults, if the neurotypical person or someone with a certain amount of sense of what’s happening, can narrate your thought process as a teaching method.

So to say, “Oh, so as you might see, grandma came in the room. And now that there’s more people in the room with us, I turned down my laptop just a little bit. Because once more people come in the room and they’re not watching what we’re watching, it’s going to seem loud. So I’m going to turn it down.”

Things like that because that might not naturally occur. And if you can narrate it, I learned this from a parent of a student that we had had here at Pathways, I think probably 14, 15 years ago. And she just narrated everything for him. And it was just such a strong teaching tool. It was so second nature to her.

But I really took that away from her that you just always want to explain and narrate. And don’t assume someone understands. Don’t assume. But also, you know, you don’t want to talk down to anyone, of course.

I think, you know, kind of being a little less judgmental, a little more compassionate when someone isn’t able to follow a rule. Try to figure out why, maybe there is a reason behind it. I think that’s a big thing that we see here when kids aren’t able to meet an expectation.

Typically, they don’t have the skills in the moment or they’re dysregulated emotionally, or from a sensory perspective. And it’s not just about, you know, “I’m the adult and I set these rules and you’re the student, you need to meet them. You’re the child. And when you don’t meet them, that means you’re not doing your job or you’re bad.”

No one would say, “You’re bad,” but that’s what kids internalize. And it’s really about, let’s see how we can work together so that you can do what we need you to do. Because we do want people with ASD to have a sense of what’s expected in the world.

It doesn’t do anyone any good to be so accepting of everything about them, but not give them an idea that if you do that in public, some people might look at you.

And you’re not doing it to shame, but you know, if you have someone that really likes spinning, if you have a 10-year-old child that really likes spinning, it’s okay to help them see that there are places where they can do that, where it’s safe to do it.

Places where it’s not safe, like in the middle of a crowded parking lot. And what are other sensory options that we can give that child to meet those needs? Or can we plan in little sensory breaks where they can spin? So kind of, how can we help them meet their needs?

And I think we want to do that with everyone, helping people get what they need, but in a way that works for everyone, in a way that’s compassionate, in a way that’s understanding.

Jenn: I would love a little bit of advice about how parents or caretakers could explain spectrum disorders to their loved ones. A follow up question would be, does the language for an explanation differ depending on the age of the person they’re explaining it to?

Laura: I think it can be so hard to relate to sometimes for loved ones, because if visually someone, and if you’ve seen them, meet certain expectations.

So, if you have a 14-year-old, who was at Thanksgiving dinner last year and was able to sit at the table, but this year he is going through some stuff and he just isn’t in a place where he can sit at the table, it can be hard for maybe a family member to understand, “Well, he did it last year.

He sits at the table every night at dinner. He needs to... This is one of those things he needs to do. He needs to come out here. This is Thanksgiving, we’re all around the table.”

And it can just be so hard I think, for people to relate to what someone is going through when on the outside, we all look the same. So, in terms of explaining to family members, our best bet is to go back to different brain wiring.

And, you know, there’s no hard and fast answers for that. But where the research is headed it sounds like, I was reading some interesting things about brain cells called microglia. And they actually move around the brain.

Scientists originally thought that they were just there as kind of, immune cells that would clean up messes or, you know, maybe originally just immune cells that helped. Then the understanding changed to, “Wow, these microglia are actually involved in pruning.”

You know how as infants, we’re all born with millions and millions of nerve cells. And it’s like, you really, you couldn’t exist in life, if you went through life with all of those. And so over time, millions are pruned down. And these microglial cells are involved in that.

And they’re now thinking that they might also be involved in other aspects of the brain. So, anytime you can bring it to, do a little research, bring it to actual neurology, biology, nervous system, brain based differences, I think that helps.

In terms of explaining to different age groups of family members, I think you do want to adapt what you’re saying to different audiences. But I think it always kind of, if you can find any way to help them relate, if you can talk about something that is hard for them, like if math is just really hard for them, explain that, you know.

“Sitting down at the Thanksgiving table for William right now feels like if you had a calculus test that you forgot to study for and guess what? This is make it or break it. You might have to be kicked out of the class if you don’t pass it.”

It’s that level of heightened, “Oh, no. What have I done? Like, I screwed up.” It’s that feeling of fight or flight? I think for little children, it’s really a matter of just saying, “Everyone is different, everyone’s brain is different and everyone’s bodies are different.

And sometimes you might see someone who is sensitive to noise or who says certain things or moves their hands a certain way. And it’s okay. It really is just, we’re all different. And different people do different things.” Not that easy I realize but...

Jenn: Do you have any additional advice around how to explain a diagnosis of autism spectrum disorder to the child who has it without necessarily labeling them? And is there any age that this is appropriate or inappropriate to do so?

Laura: Wonderful question. I guess I would personally start with describing that, “All brains are different and some brains are naturally really good at math, some brains are naturally really good at writing, some are good at reading.

And if there’s something that a brain isn’t naturally good at, if they, you know, it’s not a thing that they naturally can do so easily, you can learn it. You just have to practice.

You just have to work a little harder. But that’s okay. It’ll still come. You can be good at whatever you want to be good at.”

To be honest, I think age wise, it seems really different for every family. If you have a few siblings that are on the spectrum, it might make sense, and they’re kind of open and talking about it, then it might make sense to start much earlier than you would if this is the first sibling with ASD or if you have an only child.

You’re really trying to balance the concept of everyone is different and it’s okay to have different wiring and that “Your ASD style wiring,” I don’t know, I sometimes like to say that, like “an autism style wiring makes you really good at some things, makes some things hard.

And you can use yourself as my wiring makes, you know, me really good at writing, but it’s really hard for me to, you know, cook” or something like that. I’m trying to think of something that would make sense to a child.

You always go to English and math as like the basic go-to. But maybe fixing things, like “It’s hard for me to fix things, but I’m really good at reading.” So, if you can relate like that, help the child identify things they’re really good at, support that and say, “Yeah, you are.”

But I imagine there is literature out there on the average age that it makes sense. I don’t know if I would recommend an across the board age. It seems like something better done in conjunction with any of your child’s providers or your pediatrician even, that might have a sense.

Only because the nature of ASD is that there are some developmental delays and you might be able to speak in a certain way to someone who is six, who might not be delayed in certain areas. Whereas another six-year-old, you wouldn’t even go there ‘cause it’s just not the time.

Jenn: I do want to touch upon parents and caregivers. First of all, they’re the ones who are attending, tuning in. They’re the ones that are doing all of the hard work, both in and out of the house.

I mean, they’re the unsung, unrecognized heroes of raising these brilliant, bright neurodivergent kids, but they always fall to the back burner, right? So, how can they make sure that they’re still taking care of themselves like you’ve alluded to before that they’re just, parents are putting their needs second to their kids. And that is human nature.

But how can they make sure that they take care of themselves while still looking after their loved ones who are neurodiverse, especially for those parents who have kids that need that round the clock continuous care.

Laura: Yeah. Yeah. I think there is a piece of recognizing the old adage of putting the oxygen mask on yourself so that you can then help your child.

Even though we all know that, it’s still really hard to do, but really having a talk with yourself that it is not only okay, but it’s necessary. I think it’s hard because there’s, for some families, there’s just not a lot of respite.

So, how to get a little corner of quiet sanity in a household where it just feels like it’s, you know, your kids are just making constant demands on you and there’s so much to be done and you’re trying to balance a job and you come home exhausted and yet you have to find the energy.

If caregivers, if parents can identify one, just one, more would be better, three would be great, but just one thing they enjoy and it could be as simple as a hot shower or a bath or going for a pedicure.

So, I’m listing all my favorite things right now obviously. Reading, listening to a podcast, anything that if you can try to give yourself 15, 20 minutes of that one thing you can enjoy and start with 15 minutes a day, maybe start with 15 minutes a couple times a week.

I don’t know if people can fit it in a day, but aim for getting there to a day, it actually, reminding yourself, it will help your brain.

You know, studies on meditation have shown that you don’t have to do an official meditation of any sort, but just quiet time to yourself where you are kind of meeting your own needs, it’s good for you it’s good for your brain and it will help you and your family and you deserve it.

Hard to tell yourself that. So, we’ll tell you, you deserve it.

Jenn: I think that’s the perfect way to end this session. Laura, thank you so much. You are so warm and knowledgeable and empathetic around, I mean, such a wonderful topic.

I think that there’s so much to be said about embracing all of our neurodiversity and understanding that all of these kids, whether you’re a kid, a teen, an adult who has ASD, you have so much that you can bring to the table.

So Laura, thank you so much. This has been fabulous. And thank you to everybody tuning in. This actually concludes our session. So, until next time, be nice to one another, but most importantly, be nice to yourself. Thank you again. Have a great day folks.

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