Episode 59: Autism: Diagnosis and Roadmap – Lindsey Sterling

LD Expert Podcast - Episode #59
Autism: Diagnosis and Roadmap - Lindsey Sterling

 

Jill Stowell: Autism can be a really scary word, if you don’t know a lot about it. Our guest today, Dr. Lindsey Sterling, does know a lot about it and I think you’re going to find this conversation with her to be so helpful. Welcome to the LD Expert Podcast, your place for answers and solutions for dyslexia and learning differences.

 

Jill Stowell: Today we will talk about what to do if you suspect autism, what a diagnosis means, parenting a child, teen or young adult with autism, navigating common challenges faced by families with children on the autism spectrum and some innovative groups at the Sterling Institute that I’m really excited for you to know about. I’m your host Jill Stowell, founder and executive director of Stowell Learning Centers and author of Take the Stone Out of the Shoe: A Must-Have Guide to Understanding, Supporting and Correcting Dyslexia, Learning and Attention Challenges.

 

At Stowell Learning Centers, we work with children and families just like yours. When you have a child who is struggling, you feel like you’re the only one. You don’t know where to turn. You don’t know who to talk to. Well, this podcast is for you. We will equip you with knowledge and practical tools for understanding and helping your child. If this episode brings up any questions for you, go to stowellcenter.com and give us a call.

 

Our guest today is Dr. Lindsey Sterling, a clinical psychologist and founder of the Sterling Institute in Naples, California where she focuses on child psychology and specializes in autism and neurodiversity research and treatment. Welcome Lindsey.

 

Dr. Lindsey Sterling: Thank you for having me.

 

Jill Stowell: Oh, I’m so excited to have you. I have so many questions for you. But let’s start with a little bit of background from you about your interest in autism and your journey to founding the Sterling Institute.

 

Dr. Lindsey Sterling: Sure. So like you said, I’m a clinical psychologist. I think sometimes all the terminology can be a bit confusing for people. There are school psychologists. There are non-clinical psychologists. So clinical psychologist means I have a PhD in child clinical psychology and it’s a clinical degree.

 

As far as my interest, it’s funny. I think back to my essays to get into graduate school. I’ve always been interested in psychology and always been interested in the brain and this was sort of like a perfect marriage of being able to be in the field of psychology but study things like psychophysiology and neurological underpinnings of some of the different behaviors that we see.

 

So I went through graduate school and was in what we would call like the academic track. So grant writing, working at universities. As a professor, doing research in the fields but always clinical research, so always seeing families at the same time.

 

As the years went on, just feeling like doing some soul searching about why I really went into the field, which is that – you know, I love working with the families, with the kids. So started building a private practice, was always doing a little bit of private practice work on the side while I maintained academic positions.

 

Then eventually several years ago took the leap into private practice in Long Beach which as you mentioned Naples is a part of Long Beach in California and had been trained for many years, all the way through graduate school and beyond doing diagnostic assessments. My post-doctoral work was in cognitive behavioral therapy and understanding the physiological underpinnings of anxiety and autism. 

 

So really felt pretty prepared to serve this population and about a year and a half ago realized we have this long waitlist of families searching for answers, for diagnostic clarification for their kiddos. They had teens. They had young adults in for therapy.

 

So I started to build the group out and hire other amazing clinicians. The other clinicians similarly went through a track to really specialize in developmental disorders over the years and the idea was to really shorten the waitlist so that families weren’t waiting months and months and months to get answers and to get support.

 

So we built this group out and we now have a group clinic and one thing I should probably add when I mentioned that, I hired other clinicians with the specialty. Graduate school is a little bit different than medical school or other types of training where when we apply to graduate school, we apply to work with a specific person who specializes in the exact area that we want within the field.

 

So when I applied to graduate school, I applied to work with a mentor who specialized in autism so that all of my work in graduate school centered around autism. So we really get years and years of training and so I saw other clinicians who had similar backgrounds and I always tell people there the clinicians in our group are people I would send my own kids to. I was very I guess you could say selective about making sure that they have this breadth of experience and knowledge too. 

 

Jill Stowell: Well, I am so glad that you are there. I think there’s just such a huge need and you’re right. When parents start to become concerned and they really need help, they really need help now, not months and months and months down the road. 

 

Dr. Lindsey Sterling: Yeah. It almost didn’t feel ethical, right? That’s the nature of the field. People are waiting months and months for an assessment but as a parent, I could relate to this idea that when somebody suggests something about your child, like this could answer some questions, this could provide some clarity.

 

If you get these answers, there might be early intervention or more specific intervention that could be helpful. You feel like you should have done it yesterday, right? So then to get on a waitlist and say it’s six months or nine months or two years before you can get this assessment, it didn’t feel like I was really serving the community in that way. So now we have a team and we can get people moving through pretty quickly.

 

Jill Stowell: That’s great and so needed. So when a parent suspects that their child may have autism or needs that they don’t quite understand, the next step is who to go to for a diagnosis. Should they go to their pediatrician or to a psychologist or both? Where do they start?

 

Dr. Lindsey Sterling: Yeah, it’s a great question. Some of that depends on the age of the child or the person. So it’s always great to run things by your pediatrician and there are some really wonderful screening measures that have gone through rigorous testing. So like for toddlers, there’s one called the M-CHAT that pediatricians can give you and it’s a really quick questionnaire. It’s not diagnostic. 

 

So screening for something is different than diagnosing. Screening says, OK, yeah, there are some concerns here that maybe exceed the threshold of what we see in most kids. So this deserves further exploration. You know, you should go get an investment. So that’s something that you could do through a pediatrician unless the pediatrician is a developmental pediatrician with extra training and those do exist.

 

Most pediatricians are not doing full autism assessments. So that’s where a clinical psychologist would come in because testing for autism does take – it takes several weeks to go through and meet the child, do extensive interviews with the family because – and we can talk about this later as well – it's not just a flair of behavior as it happens all of a sudden. There really is a pattern that we see over time.

 

So asking the pediatrician for advice or who to go to, if you have concerns, if the concerns are warranted. But as a parent, don’t let anyone brush you off either and say, “Oh, you know, boys are just delayed.”

 

Sometimes we know in our gut if our child just feels a little bit different than some of the other kids that we see. You know, like in playgroups and things like that.

 

There’s also the regional center. So if you have a very young child, you can go through the regional center and see what support they offer and then if you’re older, if you’re like a young adult, that you can still ask your physician if they have somebody that they would recommend. That you may – and this is sort of the unfortunate burden on people, on families, that you may be searching for a clinical psychologist in your area who does diagnostic assessments.

 

I always say that’s the hardest part, right, is that by the time people come to us, oftentimes families have already gone through this process of coming to terms with even asking the question about autism and finding experts who can help them. So they’ve already gone through quite a journey sometimes by the time they come to us.

 

Jill Stowell: So you do evaluations for all ages at the Sterling Institute. I think you mentioned a child as young as 16 months and also toddlers, 25-year-olds. So tell us a little bit more about the evaluation process.

 

Dr. Lindsey Sterling: Sure. So yeah, 16 months is pretty young, right? So that’s not a typical kiddo who we would see unless the concerns – you know, oftentimes I try to talk to parents ahead of time on the phone, get a sense of what their concerns are.

 

Sometimes they are pretty glaring. Like the parents really have significant concerns and in that case, we don’t want to wait. There’s really no benefit to waiting. 

 

However, the diagnosis does become more stable, closer to 2, 2.5 as kids get older. So if it’s a little wishy-washy at 16 months, we would probably wait until they were a little bit older and then yes, we see school age kids. We see adolescents and we see adults of all ages. 

 

The evaluation obviously would be a little bit different depending on the age. But there are some core aspects that always go into an evaluation. So – and this may differ from clinic to clinic - but what we do is a pretty standard psychiatric history intake because we don’t want to go into the assessment with just tunnel vision and say we’re just looking for autism, right?

 

So we want to do an interview that really gets at family history, at history of the person’s concerns, what school is like for them, what it’s like with friends if they have medical conditions. So really trying to take a broader look to make sure. You know, is there something else we should be looking at? Is it warranted that we’re looking at autism?

 

So that’s the first meeting and it’s usually with a parent unless we’re assessing / evaluating an adult in which case sometimes they might want a parent with them too and that’s actually great to get that history.

 

The second meeting we tend to do an interview called the Autism Diagnostic Interview, which is long. It can go for an hour, two hours. There are 80 something questions and it’s really considered one of the gold standard parts of an assessment.

 

Some people sort of skip over it. The reason why I do it and our team does it is because again autism is not a snapshot in time. It’s not something that somebody just catches when they’re 14 or they’re 25. It is a developmental condition.

 

So we want to make sure if we’re giving this diagnosis, if we’re even considering it, that there is a pattern from an early age that we can see. We used to say we had to see symptoms before the age of three and that has changed. Now it’s just in the – you know, sometime in early development, but sometimes we don’t see the behaviors or the differences really emerge until life gets more stressful and complicated.

 

So sometimes it’s really subtle when someone is little and it’s not until school age or later that we really see that emerge. So the developmental history interview is also with parents. But if we’re evaluating an adult, sometimes they don’t want their parents as a part of it. Sometimes they can’t for whatever reason.

 

We still try to interview people who knew the person when they were younger, whether it’s a sibling, whether it’s a partner, whether it’s an old friend. We just try to get information from wherever we can.

 

Similarly, with young kids, we will – with the parent’s permission, we will talk to their schools. Sometimes we will watch them at school, go and observe. Talk to whoever referred them, whether it’s a pediatrician or a psychiatrist or a therapist.

 

And then the third meeting would be what’s called the ADOS, the Autism Diagnostic Observation Schedule and that’s a play-based assessment.

 

So for little kids, this feels maybe sort of fun. There’s a bunch of toys out. It’s very standardized from our end. But from the child’s perspective, there’s just a bunch of toys out and they can explore and we’re looking at things like how they play with toys, if they try to involve other people when they play, if they respond to our bids to get their attention and to play with them. So that kind of goes back and forth that they’re pretending.

 

Then that ADOS, as we call it, another part of gold standard, a part of the assessment, there are four modules and there’s also a toddler module. So a module one for example would be used with a very young child who’s playing. But as they develop more speech, you would use a higher and higher module.

 

So you can use a module four for example with an adult and that’s much more conversation-based. Obviously we’re not going to be playing with toys with an adult. We’ve also learned over time that sometimes we need more than that, that again an ADOS might be an hour, hour and a half and that doesn’t show the full picture of a person.

 

So with an adult, we also ask a lot of questions and we really try to do more interviewing with them about what it’s like for them at work, what it was like for them at school. Really get their insight about what their experience is.

 

So that’s part of the assessment. We tend to send standardized questionnaires as well, kind of like a validity check to get more data, to also screen for others, psychopathology.

 

We pull it all together. We consult with people. We think about it. We discuss and then we provide the feedback to the teen, the adult, the parents.

 

I think our style is very collaborative. So along the way, we’re talking through this, with the adult, with – if it’s a young child, with the parents. It’s a conversation. It’s not me just having secret data and then presenting it at the end like ta-da! But it really is a conversation because parents know their children best.

 

Adults know themselves. A lot of times they’ve advocated for themselves to get to this point to have an evaluation. So sometimes I will be observing something or I will be trying to work something out and I bring it up to them: “So you mentioned this happens to you when you’re at work. Do you think it’s because of this or because of this?”

 

And really trying to work it out together. So that by the time we get to the end, it feels like we’ve come to the conclusion together.

 

Jill Stowell: I love that collaborative idea because I’m sure getting a diagnosis of autism is very difficult and different for parents of a young child versus a teen or a young adult and so just kind of being hand in hand all the way through is going to help them to understand and know what to do with that once that diagnosis comes along.

 

Dr. Lindsey Sterling: Yeah, you’re right. The process is different depending on the age of the client, right? So for a very young child, like a three-year-old, for parents, there can be a lot of fear around what this means for the future. There’s a little bit of this like grief or mourning about what they were expecting their child to be doing at that age.

 

There are a lot of big feelings that come with that. That’s really understandable and we want to provide some psychoeducation around what autism means and really help support them. I always tell parents after the feedback we can talk again if you have more questions. 

 

But you’re right. If it’s a parent of a 13, 14-year-old, it’s often a much more complicated assessment, really going through the history and all of the different previous diagnoses and making sense of it and reading through past testing. A lot of times at that point, parents are more in the frustration phase of “We’ve been told this, we’ve been told this, we’ve been told this. We’ve dealt with this. We just want some clarity as to what’s going on. Whatever it is, we want the clarity.”

 

So it depends on the age and where the person is at in their stage of development and their stage of processing this idea of autism and we do try to feel that out from the beginning. Like in the intake asking parents questions. Like:

How would you feel if this is autism?

How would you feel if it’s not?

What’s your biggest fear around what the outcome could be?

What are you hoping for at the end of this?

Is it a report for school?

Is it just a letter to you to better understand yourself?

 

It’s really – our agenda is their agenda, right? Like there’s no – we’re doing this so that the family gets support and that really differs depending on the age and where they’re at in their own process.

 

Jill Stowell: Right, right. I have heard that often young women get kind of missed and so by the time they get diagnosed in their late teens or early 20s, sometimes it’s a real relief to just have a better understanding of why they think the way they do and – yeah.

 

Dr. Lindsey Sterling: Yeah. I’m glad you used that word because a lot of the teens who I see and young adults and older adults too, that word relief comes out a lot. Like I want an explanation. I want some clarity and we have been seeing a lot – in the last year so many girls, teen girls, young women as you said, who have gotten missed and I’m such a researcher at heart, so I’ve always gone by, “OK, well the research says we see this in boys, we see this in girls.”

 

But I have to say in the last year or two I feel like anecdotally, I’ve learned so much about what to look for in girls and how it can present differently just from seeing girl after girl, women after women and really hearing their stories and seeing some of the commonalities that they have with each other that’s different than the boys who we see.

 

I know we might talk about that later but we’ve seen so many that we’ve started to form these groups, these process groups, these adolescent girls and hopefully young adults together, so that they don’t feel so alone in that process.

 

Jill Stowell: I definitely want to talk about the groups. Before we get there though, so what are some of the commonalities that you’re seeing with girls that are on the spectrum but they kind of get missed along the way?

 

Dr. Lindsey Sterling: Yeah. So we know from some research – so let’s start with research because I always like to go there first and I’ve had some wonderful colleagues who have done this research. I didn’t do research on girls but some wonderful colleagues along the way who have really done some wonderful work about what girls look like at school.

 

So if you think about boys and maybe what your preconceived notions are or assumptions are about what a boy with autism or autistic boy might look like at school, sometimes these are the kiddos who are walking the perimeter of the playground or sitting by themselves and kind of watching or swinging on their own.

 

It's pretty apparent to the person out on a lunch yard, for example, or the teacher that this boy is having a hard time connecting.

 

What we know from some of the research is that girls tend to find ways to blend in. We can call that camouflaging.

 

Sometimes that term is used and they will kind of go up to a group of girls for example and try to be in it, right, so either playing or talking, and then they’re having a hard time really getting that interaction going or feeling like they’re a part of it. So they do what we call “flitting”... They “flit” to the next group, and they’re kind of there, and they’re doing the same thing until if you actually just look out on the playground at these girls, if you interview the teachers or some of the folks out on a playground, all the girls are playing with people. They’re doing fine.

 

And I’ve observed some of these girls, especially the younger ones, and it looks like they’re playing tag but they’re actually – and I apologize. There’s water pouring outside. I’m distracted by the rain - it looks like these girls are playing tag for example but really like I’ve observed in the girls just kind of running in a big circle because she sees the other girl doing that and it looks like she’s playing. But not truly connecting with the other girls.

 

And if you interview some like young adults, some young women on the spectrum, they might say, “Yeah, I have friends,” or “I had a best friend but I didn’t always feel like there was a true connection,” or I think some of the really fortunate ones did make a true connection with a friend, but maybe with a group of friends always felt like – I had one woman say she felt sort of like she was an alien with – and there was like the secret language that everybody had, that she wasn’t privy to.

 

Another thing that women and girls sometimes do, not to stereotype, but they’re sometimes socialized to nod and smile and kind of be agreeable and this gets mistaken for being a part of it, for really interacting socially. I can give you an example of – several years ago of an 18-year-old who I evaluated and she was wonderful. I will tell you about some of these wonderful qualities that I’ve seen in a lot of these girls. 

 

But it was tricky because she was smiling and looking at me and at the feedback, I said to her, I said, you know, you meet criteria but to be honest, this was a tricky one for me because you don’t check all of the boxes.

 

For example, you make really great eye contact, which is one of the boxes that we check in autism that people have a hard time with and when I said that to her, she goes, “Oh my gosh!” and she sort of like fell off the couch dramatically and she said, “You don’t even know how exhausted I have been trying to make myself look at you.”

 

I think that speaks to a lot of this female presentation. It’s not to say that boys don’t do that as well sometimes. But I do see a lot of girls who have kind of learned these skills. We can call that masking, right? That they’re sort of playing this part, but not truly feeling comfortable doing it and it doesn’t necessarily feel intuitive to do it. But they appear like they’re doing it and I’ve seen that.

 

Another thing – and this is not based – maybe it is based on the research and I’m not up on the research perhaps. But what I have seen clinically over the last however year or two, so many of the girls who have come in for assessment have these really wonderful, creative abilities, whether it’s writing or singing or dancing or acting. 

 

In fact when you ask their parents about their play when they were younger, they do describe this rich, imaginative play, which again with boys, when we look at the criteria, one of the things we look at is to play more repetitive versus imaginative.

 

So there may be a bit of a gender difference there which can throw us off because we’re really using criteria that were developed for boys. So this is – when I formed this group of teenage girls, each of them has this – I would venture to say this gifted ability and a creative aspect of their life.

 

So I’ve really seen how they have these differences with the socialization and some of the big emotions that come with socialization they’re struggling with. But then they have these amazing skills that are also out of step with their peers because they’re so talented in different ways.

 

So that’s – I don’t know if that has just been coincidence that I’ve seen so many girls like that but I’ve also had a few that have said things like acting they really enjoy because they can prepare for it. They can exude their emotions but plan for it and practice it and they feel really comfortable doing that and being on stage. So that has been a really wonderful outlet, I think, for all these girls.

 

Jill Stowell: Definitely. Wow, that was really insightful. I think many parents are a little bit afraid that the label of autism will cause people to have misconceptions about their child and I can certainly see and I know you can too how a diagnosis is going to be really helpful to the parent, to teachers, to the child. But can you just talk about that a little bit, how that is helpful in the child’s life?

 

Dr. Lindsey Sterling: Yeah. So first I want to validate that, that concern and that fear, right? Again as a parent, we don’t want to see our own kids differently. We don’t want other people to see them differently and autism can sound like a scary word.

 

So I think it’s really valid first of all that parents feel that and it’s not something I would ever dismiss. There is sort of this unfortunate outcome maybe of having so many – in our history, so many people diagnosed with autism who have more of a profound presentation, right? So who have had difficulty for example developing speech.

 

So I think for a lot of us, my generation and older who have children, sometimes that’s the conception that we have that autism is, that it’s more of this profound presentation which absolutely does exist still. But there is such a range in autism and so there are also people with gifted abilities, extremely intelligent and talented in different ways.

 

But when you hear the word “autism,” you don’t know which it is, right? It covers this huge range whereas I think when parents hear ADHD, there’s something that has become so normative. Normalized maybe is the word, right?

 

Like everyone – “oh, I have ADHD. It’s my ADHD. I’m disorganized. I don’t pay attention. It’s my ADHD.” Whereas ADHD can be quite interfering in a person’s life also.

 

There’s a lot of similarities between ADHD and autism and they’re both developmental conditions. But there’s something about the word “autism” that feels very heavy for people and so it’s understandable that parents have that concern. But the truth is over the years, more and more subtle cases of autism are being diagnosed and so we’re sort of forming a new conceptualization of what we think of when we hear autism.

 

As far as how the diagnosis can help, again, the concern about a label, any label whether it’s autism or something else, is also a valid concern. We think about having that report go to school and the child has an IEP and there’s that word “autism” that follows them through school.

 

So this is really something to address with parents and to talk through what those concerns are really about, right? So when you hear autism, when parents kind of push back against that and they worry about a label, I always ask them, “What is it that worries you about it? And what is your idea of autism? What’s your experience of autism?”

 

Sometimes for a parent, they had a neighbor down the street who was really impaired when they were growing up and that’s their idea of autism, right? So I really tried to talk through that with parents and provide some psychoeducation about really the range that we see. 

 

I also try to use the word “framework”. So a label really feels like a sticker that somebody gets put on them that’s just stuck on them forever. A framework is a way of understanding someone, right? So understanding their behaviors. When we understand the why, we have more compassion for someone. It can reduce conflict. We have a better idea of really how to support the person.

 

For the person themselves that can provide an explanation as we talked about.

 

And then for teachers and other providers working let’s say with a child, it gives them a framework for understanding the why. Why is this student having a hard time when there’s a substitute teacher? Are they just misbehaving because there’s a sub today?

 

No. If somebody is autistic, they have a hard time with change and they need preparation for change. So if we know that the student is autistic, then we know maybe it’s in the plan in the IEP or the 504 plan that they get a heads up when possible about a scheduled change, right?

 

So we can be more specific about how we support a child over time and sometimes those supports can be pretty subtle or nuanced. So it’s not like everybody else necessarily in the classroom knows what’s going on.

 

Even things like needing a sensory break, right? Knowing that when the student just bolts for the door and runs outside, it’s not because they’re trying to be bad or they’re misbehaving. But they’re truly overwhelmed by the noise in the classroom.

Having that framework to understand the why helps everybody be more compassionate and understanding and then really helps that student get the support that they need and eventually as they get older, helps the student, the child learn to advocate for themselves, learn which situations are best for them, how to maximize their success in these different situations.

 

I will say that when I do an assessment with an older teen or especially with an adult and they look back and they feel like, “Gosh, why did nobody look into this?” and sometimes it’s nobody’s fault. Sometimes if you look back 20 years, the field was a lot different, right? 

 

Other times, adults say, “I always knew something was different. I feel like my parents knew too. I wish I had some answers. I wish I had like the words to be able to explain this to teachers.”

 

I rarely have somebody say the opposite that, “Gosh! I was labeled all through school and that was hard.” That has just been my experience that it has really ended up to be helpful. 

 

But I can’t say that’s a hundred percent true. That has just been my experience. So I try to talk through all of that with parents and play out these different scenarios to help them really see concretely what could be helpful about it. 

 

Jill Stowell: And I love the term “framework” because really, that’s what it’s about is understanding the person’s responses, their behaviors, their needs so that we can help them in a more compassionate and productive way. 

 

In the past couple of years, our staff have really kind of dug into Enneagram which is a framework for understanding how people communicate best, how they receive information best. And so really, if we can think of it like that that we never want a label or a diagnosis of any kind to put a limitation on a person, but just to help us really understand what we are seeing better and how to work with them better. It can be really helpful. 

 

Dr. Lindsey Sterling: I love that. Right. Everybody learns differently, right? Everybody sees the world differently. Everybody processes information around them differently. And that’s part of what autism and neurodiversity is. 

 

And so, it’s not about saying, “Here’s what’s wrong with you. Here is a label.” It’s more about, “OK. We see that you do process things a bit differently. You might see the world differently.” Which is awesome, right? Because how boring would it be if we all saw the world the same way. 

 

Jill Stowell: Right. 

 

Dr. Lindsey Sterling: But it can be hard if most people see it one way and you see it another way, right? So it’s this delicate balance of celebrating it but saying – validating that it’s hard. But the more parents can get on board with that, which is a process, right? You can’t expect it right away. It’s hard to come to terms with autism. 

 

But over time, the more that people around the client, whether it’s a child or an adolescent, start to sort of speak in that language too, the more the person feels like they can kind of own this and figure out how to navigate it. 

 

Jill Stowell: And I loved what you said about as they get older, really learning how to advocate for themselves and know what they need and be able to start to express that. That’s really helpful. 

 

Dr. Lindsey Sterling: Yeah. That’s definitely a goal, and I sort of got this from a colleague. I can’t take credit for it. But some other colleagues in another state actually who work in autism, we have this group where we meet and consult and one of them was saying that she writes a letter to the team. 

 

So we’ve started to do this where we write a comprehensive report, the official diagnostic report for the parents, for the school. We write a letter like a page or a page and a half to the team. And during the feedback, go over it with them, about all of their strengths, what makes them unique. That’s really the bulk of the letter. 

 

And then – and sometimes even the sensory sensitivity of the strength, you notice things that other people don’t notice for example. You attend to details that other people don’t notice. You’re so passionate about your interest. So these aspects of autism that don’t have to be bad, but are unique. 

 

And then also, outlining the things that they have said are challenges for them and some tips to work through them. But really, the essence of the letter is to be able to advocate for themselves if they’re burnt out socially, if they need a break from something, and to really eventually feel like they can be their authentic self and that they don’t have to be so exhausted trying to mask their way through different situations. 

 

Jill Stowell: Wow! That is incredible. I’ve seen some parents do some things kind of like that for the IEP team at school because they know their child and they want the team to have a bigger picture than just whatever the challenge is. 

 

Dr. Lindsey Sterling: The whole child, and not just “here’s what’s wrong or here’s what’s hard.”

 

Jill Stowell: Right. 

 

Dr. Lindsey Sterling: And that can make the child feel so good if the teacher knows this is a particular strength. And a time when this child can kind of rise up and even leave the other kids, right? 

 

Jill Stowell: Right. 

 

Dr. Lindsey Sterling: That’s another thing to the classroom too. 

 

Jill Stowell: Right. So let’s shift gears just a little bit and talk about parenting a child or teen with autism. Are there any particular seasons of growing up that seem to be more challenging for parents of children on the spectrum? 

 

Dr. Lindsey Sterling: Like different developmental periods? 

 

Jill Stowell: Yeah. Yeah, or times. I mean there certainly are with just parenting. 

 

Dr. Lindsey Sterling: Well, and that’s actually a wonderful point is that it kind of overlaps with those times. And so, this has changed a bit since I’ve seen more and more girls of all ages. But I used to say that the number one referral that we would get was like 12-year-old boys. And I think there that there’s something about that age that’s just hard anyway, right? As kids are starting to enter puberty, maybe they’ve gone into middle school where they’re switching classes and the demands have increased. 

 

So any time you see a jump in demands and expectations whether that’s socially, academically, those big transitions I think are oftentimes when we see a bigger sort of burst in referrals, because parents are worried about their child entering kindergarten or worried about this next step where they transition to. 

 

So I’ve even had parents used the word “regression.” Sometimes they know they have autism already or they have a diagnosis of ADHD and they’re wondering if it’s something more. And they would say, “Oh, my gosh! He turned 12. He turned 13 and he regressed.” And it is a really scary feeling when parents feel like that.

 

And unless somebody has a seizure disorder or something, they haven’t regressed. 

 

But what has happened sometimes is that discrepancy between where their child is at socially, emotionally, and where other kids start to kind of burst and jump to that next level, that discrepancy feels bigger. And so, parents start to feel like, “Oh, my gosh! My child is even more behind or they’re struggling in different ways.”

 

And so, this often happens with kids who are very bright, who have really gotten by in school. And so there haven’t been big reasons to alert people to get a child assessed. But then later in elementary school or in middle school, when things get really complicated, there are really these expectations for lots of independence, social interactions become so complex and nuanced. 

 

So then all of a sudden, the teacher is noticing that it’s not just about academics and how smart someone is, that there are all these other skills that are coming into play that are getting in the way. And so, I think for us, we tend to see people, clients around those times. 

 

And then another is much later, that first year in college. If we look at the theme, the transition to a new expectations, that happens a lot. And so if somebody – there has been a suspected diagnosis but they haven’t gotten a diagnosis for example or something they’ve been struggling with all along. 

 

Unfortunately, we often see that first year of college is really, really difficult because again, these executive functioning and daily living skills come into play with managing their time, advocating for themselves with professors if they missed an assignment, doing their laundry, getting meals prepared, managing roommate conflicts, all of these things that can interfere with success in college that’s not just about how smart are you and can you do the work. 

 

And so when someone comes in with their high schooler, I’m always really excited like this is great, this gives us some time to prepare for some of this before they transition to college. So I would say the shorter answer to that is these big transitions where the expectations are the environment really changes. That’s where we see a lot of need for more support. 

 

Jill Stowell: And we actually see that at the Learning Center as well. 

 

Dr. Lindsey Sterling: I’m sure you do. Yeah. 

 

Jill Stowell: Those same kinds of transitions just more is demanded of the attention system, the executive functions, social skills and academically and it just … 

 

Dr. Lindsey Sterling: It’s more crazy. Yeah. 

 

Jill Stowell: And that is actually true with parenting in general too. 

 

Dr. Lindsey Sterling: Exactly. 

 

Jill Stowell: It can be spotlighted a little bit more. 

 

Dr. Lindsey Sterling: Exactly. And as you know with ADHD, with autism, there is often this discrepancy between cognitive ability. I actually listened to another podcast a long time ago where I really like the words that they used. This cognitive ability is what somebody can do. This is like their built-in ability. 

 

But adaptive functioning, their self-care, their daily living skills, that’s what they do do. And sometimes there is this disconnect and it’s really confusing for parents because they are like, “My child is so smart. They are so smart. Why can’t they – why aren’t they showering every day? Why can’t they help with this chore?” There is a disconnect and there are things that interfere with that.

 

And this is getting into your realm in terms of these different systems of attention and short-term memory and these other aspects of executive functioning. Sensory differences get in the way. When you really dig deep, why isn’t the person showering every day? Is there a sensory difference there? Is there an emotional interference where they’re just so exhausted from managing their stressors throughout the day that doing what seems like a simple chore is actually really hard. 

 

And so, there are these disconnects where it’s not necessarily – I always tell parents, it’s not about lowering your expectations. No. It’s about adjusting them and figuring out maybe how to organize things in a way that feels more manageable. 

 

But those are the things that I see when it comes to transitioning to middle school, high school, and college that all of a sudden it’s confusing. Here is this really bright kid, why are they falling apart in these other ways? 

 

Jill Stowell: Yes. A concern that many of our parents have especially with their teens and young adults is anxiety and depression. How prevalent is that with autism? 

 

Dr. Lindsey Sterling: Yeah. This is a topic that’s near and dear to my heart because this was my – in graduate school, in the early 2000s, I was doing an eye tracking study. So something totally unrelated to depression and anxiety. But I was looking at facial recognition in adults on the spectrum. And as part of this study, we had to do or I had to do a psychiatric history interview to “rule out” other conditions so to make sure that we have this clean sample of autistic adults. 

 

And in doing this interview, what kept popping up was depression, depression, suicidality, depression, anxiety. And I brought this to my adviser and I was like, “This is a thing. This is a really significant thing here. I’m seeing this in almost every research participant.” And at first, it was kind of like, “Oh, gosh! This is not an important thing.” 

 

And then as the months went on, even she was like, “Oh, my gosh! I’m starting to hear more and more about this.” And we started really analyzing the data because we had cognitive data, we had a lot of data on these participants, and published a paper about the high association between depression and autism in the sample of adults. 

 

And after that, I ended up doing my dissertation in anxiety and understanding the physiological underpinnings of anxiety in autism and continued that through my post doc and beyond. And so, this became sort of like a special interest of mine of trying to understand like is there a common ideology where autistic people are just prone to having both? 

 

Just because you have autism doesn’t mean that you’re immune from other things. That’s called diagnostic overshadowing where we just say, “Oh, it’s because of their autism, they don’t have anything else,” when in fact, it does seem that there are higher rates of anxiety and depression. 

 

So there are many theories around this in terms of the ideology and perhaps similar areas of the brain that are implicated or things like serotonin that are implicated in both. But if you think more about the clinical piece of this, about again, if you think about like a really bright kiddo who keeps trying to socially, he is motivated. There’s a misunderstanding. Most – many people on the autism spectrum are socially motivated but they struggle with the execution of it. 

 

And so if you think about over time, having these really confusing interactions or being rejected and not understanding why or having conflict and not understanding why, that can lead to some pretty negative mood or feelings, some pretty negative feelings over time. 

 

So what we tend to see and I do think we’ve seen in the research and I definitely see it clinically is oftentimes, we see anxiety early on like school age even, which could be the sensory bombardment. It could be kind of this sort of awareness that maybe they don’t quite know what to do in a social situation and that’s scary. So this anxiety piece is certain associated with. 

 

And then over time as this awareness grows, oftentimes, the depression can set in and that might be due to isolation or just feeling rejected or feeling like, “What’s the point? I keep trying and it’s not working.” 

 

I’ve had adults used this really wonderful descriptions of like, “It felt like I’m looking at a fish bowl like would I want to get in there and I want to be with them but I don’t know how to get it in.” 

 

So rarely do I – I do hear it but more rarely do I hear like, “I just don’t care at all.” It’s really more about, “I want to get in there but I’ve kind of given up because I feel like I’m having hard time with it.” 

 

So if you think about all of the associated mood and feeling that goes along with that, it’s pretty salient. So one of the biggest focuses in our clinic actually, our therapists have really specific training on cognitive behavioral therapy and other strategies to target the mood symptoms in autism because a lot of people will say, “Hey, I’ve gotten early intervention. I’ve had social skills group.” It’s the mood stuff that’s interfering. So that’s a big priority I would say in our group to focus on that. 

 

Jill Stowell: And a couple of times you’ve mentioned and I think this is so important that this is so taxing for these individuals. It’s easy from the outside to focus on, “Oh, well, they don’t have good eye contact. They don’t connect well. They don’t. They don’t.” But the truth is, like all humans, we are trying really hard to function really well and connect and we want to do that and it’s exhausting to not be able to do it as well as you want or not understand why it’s not working the way you think it should. 

 

Dr. Lindsey Sterling: Yeah. That’s a great point. And actually, someone else mentioned this to me and it just really resonated when they said, he said, “Well, burnout is like low-level depression.”

 

When you really feel that burnout, which a lot of autistic teens and adults will explain, you do see these symptoms that look like depression and it’s sometimes hard to tease apart. So for example, like losing motivation on things that were fun before or sleeping more, not joining the family to eat, not engaging in as much conversation and they’ll just say, “I’m burnt out. My battery is just depleted.”

 

And you can see how over time then if they isolate themselves more and they say no when people offer to do things with them, that that kind of snowballs into further isolation. And so, we often do help or talk with teens and adults about how can we protect ourselves like how can you protect yourself when you foresee that you’re going to have burnout? How can you pace yourself socially? How can you say, “No, but I would love to do something next week,” so that it comes off positive? 

 

I’m also thinking about a related point just to kind of piggyback on what you were saying about this, facing all of this during the day and being depleted. A mentor that I had at UCLA, Jeff Wood, and one of his colleagues published a paper about these autism-specific stressors and why there is this increased rate of mood symptoms. 

 

And if you think and I almost always now talk about this with families and then talk through with the child, teen, the adult of what their specific stressors are, but if you think about during the day, if they are overwhelmed by sensory sensitivity so the clock ticking in the classroom, the smells, the people rustling through their backpacks, the pencil moving on the table, and they’re trying to navigate that all day. And maybe at home, they would rock or they would do something to soothe themselves but they feel like they can’t really do that at school. 

 

So on top of being extra stressed, they can’t engage in the things that calm them down. And then they’re asked to present in class or they are being called on in class or then they go to lunch and they don’t know who they’re going to eat with and they can’t really tell if somebody is giving them a weird look or if they are offending someone or navigating these different social situations where they know in the past they’ve been rejected. 

 

All day trying to deal with that, those are specific stressors. Everybody is already faced with stress during the day. But this is above and beyond. And if you think about that then of course, that’s going to be related to things like increased anxiety and/or depression. 

 

Jill Stowell: Right. You have a resource that I want to make sure people know about and we will put it in the show notes, The Social Survival Guide for Teens on the Autism Spectrum: How to Make Friends and Navigate Your Emotions. Where can people access that? 

 

Dr. Lindsey Sterling: Thank you. Yeah. So that’s on Amazon or really anywhere that the books are sold. And that was an interesting labor of love because I wrote that in the beginning of the pandemic when everybody was social distancing and isolating and I was trying to express socializing. 

 

But what I would say about that book which is nice is there are books and resources for social skills that are so important.

 

The priority for me in this book was integrating the emotional piece. I talk to a lot of kiddos and teens and adults who will say, “Yeah, I know. I know how to approach a group. I’ve been in a social skills group. I know what I can say. But then I would get there and I would start thinking to myself, ‘What if they don’t want to talk to me? What if I say the wrong thing?’ I start to get a stomachache. I start to get nervous and then my words came out weird and then I just say forget it and I avoid it.” 

 

So it’s not just about the skills. It really is about managing the emotions that come with it, and also a component of self-care of really protecting yourself, advocating for yourself. 

 

The other piece of that book that I think is important is that here are some tools if you want them. So there’s no like here’s how you have to act, here are the skills you need to use. It’s more like, “Hey, you might not want to use them. That’s OK. But there might also be a time when you really wish you had that toolbox. Here, you can use them when you want on your terms.” 

 

Jill Stowell: That is fantastic. And I want to say the name of that again because it sounds like an incredible resource. The Social Survival Guide for Teens on the Autism Spectrum: How to Make Friends and Navigate Your Emotions.

 

Wow! I think that’s so critical that that underlying emotional piece and understanding is in there, not just here’s what you do. 

 

Dr. Lindsey Sterling: Right. 

 

Jill Stowell: Here’s the framework. 

 

Dr. Lindsey Sterling: There are other things that get in the way of that. 

 

Jill Stowell: Right. Right. So before we wrap up today, I want to make sure that we talk about the process groups that you are developing at Sterling Institute because I think that also is an incredible and much needed resource. So, can tell you tell us about those? 

 

Dr. Lindsey Sterling: Sure. So these groups sort of formed organically. There was no big plan for them. It was more, as I’ve mentioned, over time, doing assessments with so many – it started really thinking about teenage girls. And hearing their stories and these amazing girls, adolescents, but this common theme of, “No one else really gets it” or “I’m exhausted having to explain to people what this is, what does it mean to be in neurodiverse” or “Do I even disclose my diagnosis. That feels so exhausting too and risky and I just feel like I’m navigating this by myself and it’s kind of a lonely world.” 

 

And I kept hearing this same theme thinking to myself that I know there are others out there because I keep meeting them. And so, we formed this group really – really it was kind of born out of that. 

 

And so the group we’re in now, I think we’re on week 6, I’ll meet with the girls again later today, and it really is like the highlight of my week. And so, we have about five of them, and before the group started, it’s an 8-week session, we gave them a survey so that they could rank the topics that are most helpful to them. 

 

And so this is not a social skills group because I feel like there are lots of great social skills groups out there that a lot of our clients have been able to access. But it’s sort of like the next step where they want to hear from other teens who are not the same, like, every girl is totally unique in this group. But it has been so enlightening to hear from them and they support each other. 

 

So topics have included things like how do we communicate to our family when we have social burnout? And some of the ideas have been so great like, “Oh, I put a post-it outside my door and my mom knows like give me some time.” And just hearing from the other teens the words that they use and how they’ve communicated that. 

 

Other topics have been things like masking and how exhausting that is. Some of the girls in the group feel like they don’t really have friends, others do. So how would they make their friends? How has that worked for them and what did it feel like for them when they didn’t have friends? So they can all relate to each other. 

 

Things like navigating social conflict, disclosing diagnosis, just all of these really I think relevant and timely topics or preparing for that next step like college, navigating relationships or gender questions. 

 

And so, it’s just – oh, and then last week’s topic was about emotions, about managing anxiety and some different tips that they had for each other. So I’m kind of moderating the group but really letting them hear from each other and normalizing the experience for each other. 

 

So our hope is to continue having these groups, so for boys, for college-age students, young adults. And so, we’re just kind of actively recruiting and building out this list so that we can start to group people together. And I screen them beforehand. So I do a meeting like a free of charge meeting over Zoom just to get a sense of what they are looking for to make sure that the group would be a fit for them. And then we try to group them together. 

 

So it’s sort of an experiment in a way. This is the first group that we are doing. But I feel really passionate about it because I feel like it’s a way for them to feel connected to each other rather than just being on an island and going through some of the stuff on their own. 

 

Jill Stowell: Absolutely, and to be able to help each other. Things are received at that age better from a peer but also, it feels great to help a peer. So I think that’s amazing. 

 

Dr. Lindsey Sterling: Exactly. It makes them feel so helpful. And I’ve told them a couple of times in the last two weeks. I’m like, “You guys, I’ve been doing this for like 20 years and you’re bringing up ideas that I never have thought of.” That’s what’s fun too is that they have the lived experience to be able to share that with each other. 

 

Jill Stowell: And these groups are done virtually, right? 

 

Dr. Lindsey Sterling: They are for now. 

 

Jill Stowell: So anyone in California could attend possibly. 

 

Dr. Lindsey Sterling: Yeah, that’s a great point. So all of our psychologists and clinicians are licensed in California and so, we do do a lot of virtual work especially for girls where they don’t feel like there as many resources. We will do evaluations for people in the Bay Area. We always like to meet in person especially for an assessment but we also don’t want that to preclude somebody for getting access to support that they need. 

 

And so, the groups, we are starting it virtually for a couple of reasons. One is the geographical part that the girls are a bit spread out geographically. So there is the convenience factor.

 

The other is that there were a couple of girls who actually said, “If it’s in person, I’m not ready to do that.” So it has been interesting because I’ve had some parents and other people say, “There’s no way. We would only do this in person.” And I respect that too. There is just something to be said for getting to be in person and interacting together. 

 

But I also felt like actually more people would access this and feel comfortable doing it, starting off virtually.

 

I do have a secret hope that I’ve mentioned to them that after 8 weeks, we all get together and try to go to lunch or do something so that they can actually meet each other in person. We will see how that goes. 

 

Jill Stowell: That might be the whole next step, the virtual group and then the on-site. 

 

Dr. Lindsey Sterling: Yeah, and it’s encouraged that they connect with each other. That’s another difference with these evidenced-based social skills groups that there is a place for them that’s so important, but making friends within the group is actually discouraged in the social skills group because they don’t want that to get in the way understandably, right? They don’t want there to be any sort of like anybody left out and that sort of thing. So I respect that approach as well. 

 

With this group, it is a little bit looser where if somebody wants a phone number and they want to connect and especially at the end of the 8 weeks, we encourage that because we want them to be able to build some connections out of it. 

 

Jill Stowell: Great. Well, thank you so much for joining us today, Dr. Sterling. This has been just an incredible discussion. If you had one piece of advice for parents of neurodiverse learners, what would it be? 

 

Dr. Lindsey Sterling: Oh, gosh! That’s a hard one.

 

Jill Stowell: It is. 

 

Dr. Lindsey Sterling: Probably the advice that I even as a parent that I wish I could own because I know this is hard for parents is to really be comfortable with and celebrate your child being different because I think that sometimes that’s really hard when you’re in a group or you get feedback from other people about what their children are doing and know that different isn’t bad. Different can be hard but different doesn’t mean bad. It actually can be wonderful. So that’s sometimes easier said than done to really take in and to accept but that would be my hope for parents. 

 

Jill Stowell: Thank you. What is the best way for someone to connect with you or with Sterling Institute? 

 

Dr. Lindsey Sterling: That’s a great question. So we have a website, SterlingAutism.com. There is an email for our front desk coordinator and she will always forward it to whoever it should go to, and that is [email protected]. We’ve just started social media which is new for us. We have an Instagram, @SterlingAutism also. 

 

Those are probably the best ways. Even through the website, there is a form that you can click and it goes straight to an email. Those are probably the most sure ways to get a response, especially the Frontdesk@SterlingAutism. That is checked all the time. 

 

Jill Stowell: Great. Well, thank you so much. This was really helpful. Thank you for the work that you’re doing. 

 

Dr. Lindsey Sterling: Thank you for having me and for the work that you’re doing as well. 

 

Jill Stowell: Next week, we will continue our discussion on neurodiversity and autism with an emphasis on building comprehension and mental flexibility. 

 

At Stowell Learning Centers, we help children and adults eliminate struggles associated with dyslexia and learning differences. We want to make this journey easier for you. Connect with us on social media and on our website, StowellCenter.com for information and free resources. 

 

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