Overview of the Disorder

Autism spectrum disorder (ASD) is a biologically based, neurodevelopmental disorder. It is identified in the DSM-5 (2014) as “persistent deficits in social communication and social interaction” and “restricted, repetitive patterns of behavior, interests, and activities.” Autism is viewed on a spectrum because of its neurodiversity; it can be said that no two cases of autism are alike. How we have approached our understanding of autism has had recent shifts, and innovative research continues to push the boundaries of this understanding.

Autism spectrum disorder has had a unique history in its development and articulation as a disorder. Earliest mentions of autism come from the child psychiatrist Leo Kanner, who in 1943 published a paper with “autistic” in the title; in it, he wrote his observation of a unique, unarticulated condition in children (Kanner, 1943; Tanguay & Lohr, 2016). This condition was named early infantile autism (Spielman et al., 2020), and it was characterized mainly by an inability to form close emotional ties with others, speech and language abnormalities, repetitive behaviors, and an intolerance of minor changes in the environment and in normal routines (Bregman, 2005). The current iteration of autism spectrum disorder was grounded in Kanner’s and Hans Asperberg’s work (Asperger, 1991; Spielman et al., 2020, Tanguay & Lohr, 2016).

Autism did not become an official diagnosis until the DSM-III was published in 1980 (Tanguay & Lohr, 2016), and it came to its current rendering of autism spectrum disorder with the publication of the DSM-5 in 2013. Where there were previously three separate disorders— autism, Asperger’s syndrome, and pervasive development disorder—the DSM-5 merged these into the current diagnosis. The rationale points to reasons such as the lack of literature that speaks to differential responses to treatment or differences in cause between the previous categories of autism and Asperger’s (Happe, 2011; King et al., 2014), and the lack of successful genetic studies that could identify differences between the behaviorally defined subtypes of autism (Harris et al, 2008; Happe, 2011; King et al., 2014). Some people who were diagnosed with Asperger’s may still be attached to that label rather than autism.

Prevalence of Autism Spectrum Disorder

Autism’s prevalence has steadily increased, likely due to the changes in case definition, more awareness about the disorder, earlier detection, as well as more availability of specialized services related to autism (Kogan et al., 2018; Xu et al., 2019; Maenner et al., 2020; Lai, Lombardo, & Baron-Cohen, 2014) with research indicating a 10% increase in prevalence since 2014 (Maenner et al., 2020). The prevalence rates in the US vary from 1 in 54 overall (Maenner et al., 2020), to approximately 1 in 40 children overall (Kogan et al., 2018); with sex variants ranging from 1 in 26 boys, and 1 in 93 girls (Kogan et al., 2018) to 1 in 34 boys, and 1 in 145 girls (Maenner et al., 2020).

There are known neurodevelopmental comorbidities with ASD, with studies indicating that approximately 33 to 45% of children with ASD have an intellectual disability, learning disability, and language/communication disorders (Simonoff et al., 2008), and that 50% have attention deficit hyperactivity disorder (Leitner, 2014; Simonoff et al., 2008). Other comorbid psychiatric conditions include anxiety disorders (like generalized anxiety disorder), panic disorder, separation anxiety, and social anxiety disorder (Zaboski & Storch, 2018); as well as other disorders such as obsessive-compulsive disorder (Postorino et al., 2017), depression, and oppositional defiant disorder (Romero et al., 2016; Simonoff et al., 2008).

How Autism Spectrum Disorder Develops in Youth

Autism has various etiological factors that are still being understood. While distinct mechanisms may not have been agreed upon (Gardener et al., 2011; Lai et al., 2014), the prevailing theory is the epigenetic theory, in which an abnormal gene is expressed early in the development of the child, which then alters the expression of other genes (Muhle et al., 2018; Samaco, 2004). It is a highly heritable disorder, with research indicating a heritability rate of 81% (Bai et al., 2019).

Autism appears highly heritable and influenced by genetics, as identical twins show concordance rates of 60%–90%, whereas concordance rates for fraternal twins and siblings are 5%–10% (Autism Genome Project Consortium, 2007; Spielman et al., 2020). Genetics influence the neural development of a child, so it follows that genetics would play a role with this neurodevelopmental disorder.

Developmental Systems Considerations for Autism Spectrum Disorder

Considering the above scenario with Leo, his team did know that his parents had a history of psychiatric disorders, as well as concerns about intellectual disability. His parents were deceased at the time of treatment. This leaves one to wonder if his parents had undiagnosed autism, especially since Leo’s parents would have been children themselves in the 1980s. Considering the developmental systems perspective, we could see this potential biological vulnerability, coupled with the social vulnerability due to parental stress and difficulty with caring for Leo, and the environmental influences on behavior (e.g., school not being the place to best meet therapeutic needs, transitions to learning new social rules and children in a residential facility).

Experiences Across Race and Ethnicity. Diagnosis of ASD had been previously known to have higher prevalence in White youth, with researchers indicating that there were significant racial/ethnic disparities in the recognition of ASD (Mandell et al., 2009). ASD has been shown to be more commonly identified in Asian than White youth (Sullivan, 2013). This often occurred because of the presence of intellectual disability which complicates further developmental assessments (Mandell et al., 2009) or because mild levels of symptoms presented by Black and Hispanic/Latinx youth go unnoticed (Nevison & Zahorodny, 2019), or are even more so mistaken for ODD/ADHD/other disruptive disorders (Mandell et al., 2009). Current trends of ASD diagnosis show that rates of ASD diagnosis for Black and Hispanic/Latinx children are exceeding rates for White children; this appears to indicate that provider barriers to identification of ASD in minority youth are beginning to diminish.

Experiences of LGBTQ Youth. One study about gender identity and sexual orientation in autism spectrum disorder (George & Stokes, 2018) offers the recommendation for clinicians to be aware of gender diversity within the ASD population, as it will influence the necessary supports for the child. George & Stokes (2018) found in their study sample that sexual orientation in some youth with ASD relates to their gender experience, specifically that the relationship between autistic traits and sexual orientation were mediated by gender-dysphoric traits. This information is critical to understand, as affective distress is common with ASD and gender dysphoria respectively, and a nuanced approach to working with ASD youth is necessary to distinguish challenges with anxiety, social skills, or sexuality-related worry. It is also important to keep in mind challenges youth with ASD may have communicating their experiences with gender diversity, as well as their sensitivity to bias/harassment due to their movement away from “typical” being further highlighted if they come out as gender diverse (Strang et al., 2018).

Assessment of Autism Spectrum Disorder

Autism spectrum disorder is probably the most misunderstood and puzzling of neurodevelopmental disorders. As pointed out in the Spielman et al. (2020) chapter that discusses autism, children with this disorder show signs of significant challenges in all three main areas: (a) deficits in social interaction, (b) deficits in communication, and (c) repetitive patterns of behavior or interests. Autism manifests early in life and introduces serious impairments in functioning (APA, 2013)(Spielman et al., 2020). There are also three severity levels, spanning from “Requiring support” to “Requiring substantial support” to “Requiring very substantial support.” The Autism Speaks website offers an open-access outline of the diagnostic criteria for autism and the related disorders, as well as the severity levels recently mentioned.

The child with autism spectrum disorder might exhibit deficits in social interaction by not initiating conversations with other children or turning their head away when spoken to (Spielman et al., 2020). These children tend to struggle to make or maintain eye contact with others and seem to prefer playing alone rather than with others. In a certain sense, it is almost as though these individuals live in a personal and isolated social world that others are simply not privy to or able to penetrate. Communication deficits can range from a complete lack of speech, to one word responses (e.g., saying “Yes” or “No” when replying to questions or statements that require additional elaboration), to echoed speech (e.g., parroting what another person says, either immediately or several hours or even days later), to difficulty maintaining a conversation because of an inability to reciprocate others’ comments (Spielman et al., 2020). These deficits can also include problems in using and understanding nonverbal cues (e.g., facial expressions, gestures, and postures) that facilitate normal communication. (Spielman et al., 2020).

As we saw with Leo, he had difficulty with modulation of the volume and tone of his speech. He also had difficulty with maintaining appropriate space when he did engage with others. These characteristics lead to further social isolation as he was not able to connect with peers or learn in a social context. His unique and heightened interest in animals tended to make for interesting starts to conversations, but he often would spout facts about these animals without concern for the interest of who was listening. His conversation skills were much more limited when the topic wasn’t focused on his interests. When he would go into “animal-mode,” he seemed to be in a world to himself that other people cannot understand. This leads to the next core feature of autism spectrum disorder, repetitive interests.

Repetitive patterns of behavior or interests can be exhibited in a number of ways. The child might engage in stereotyped, repetitive movements (rocking, head-banging, or repeatedly dropping an object and then picking it up), or she might show great distress at small changes in routine or the environment (Spielman et al., 2020). For example, the child might throw a temper tantrum if an object is not in its perceived proper place or if there are disruptions to the daily schedule (Spielman et al., 2020). In some cases, the person with autism spectrum disorder might show highly restricted and fixated interests that appear to be abnormal in their intensity. For instance, the person might learn and memorize every detail about something even though doing so serves no apparent purpose (Spielman et al., 2020). Finally, individuals on the spectrum often experience sensory issues such that they are excessively sensitive to certain stimuli or not very sensitive at all. Each person with autism may be sensitive to different kinds of stimuli, which can include sounds, textures/touch/temperature, sights, smells, and tastes. Hypersensitivity to sensory stimuli is a common source of distress for individuals on the spectrum, and hyposensitivity may lead to fixation on certain stimuli (e.g., shiny objects) or seeking out sensory experiences (e.g., rubbing a textured carpet). Importantly, autism spectrum disorder is not the same thing as intellectual disability, although these two conditions are often comorbid. The DSM-5 specifies that the symptoms of autism spectrum disorder are not caused or explained by intellectual disability (Spielman et al., 2020).

Assessment Tools

Diagnosis of autism should employ a multidisciplinary approach that should include multiple informants, consideration and potential observation of the child in multiple settings, and psychological testing that can evaluate cognitive skills, language skills, adaptive function, executive function (Blijd-Hoogewys et al., 2014), and academic function (Tanguay & Lohr, 2016). Parents may be able to observe restrictive patterns, but not all autistic children behave in this way as infants or toddlers. Depending on the context, the child may have a different presentation; for instance, they may be less restrictive with their mother, or they may be more interactive with siblings. Lastly, the neural diversity of autism creates an imperative to understand this particular presentation of autism; one of the common clinical mantras with autism is “when you meet one person with autism, you have met one person with autism”

Interview Questions for Client, Family Member, or Teacher. Autism does require specific assessment approaches, but for those not in specialty clinics, you can do brief screening questions to then see if further evaluation is needed. Tanguay and Lohr (2016) offer these common screening questions:

• Does your child talk to you or make sounds to you, just to be friendly?

• Is it difficult to catch your child’s eye?

• How has your child responded to others in distress?

You may even hear these questions asked of parents in their child pediatrician visits, especially during the first few months after birth.

Observation in Naturalistic Settings. Autism assessment will include direct observations of the client for diagnostic purposes. This is especially critical considering the core deficits of ASD according to the DSM-5 Autism Diagnostic Criteria are behaviors or patterns of behavior. Kroncke (2016) identifies key areas to be included for observation as part of a comprehensive evaluation: behavior, appearance, eye contact and gestures, play and interests, social reciprocity, attention, motor skills, mood and affect, and naturalistic. Naturalistic observations give the assessor more information about behavior and presentation across multiple settings and within naturally occurring contexts such as at home, school, or a clinic. This can be useful for complex presentations and for directly observing social abilities and social reciprocity within the child’s natural environment.

When a problem or challenging behavior is a concern, a functional behavior assessment (FBA) will be conducted. The FBA requires direct observation of the impact of environmental variables on behavior, consistent with methodology from applied behavior analysis. During a functional behavior assessment, the assessor will collect data on observations of antecedents, behavior, and consequences (ABCs) in order to hypothesize the function or the purpose the behavior is serving for the individual. This is the first step to developing an effective behavior intervention based on teaching functional replacement skills.

Measurement and Rating Tools. Common assessment tools for ASD include the Modified Checklist for Autism in Toddlers (M-CHAT) (Robbins et al., 2001), Autism Diagnostic Interview-Revised (ADI-R) (Lord et al., 1994), the Social Communication Questionnaire (SCQ) (Rutter et al., 2003), Autism Diagnostic Observation Schedule, 2nd edition (ADOS-2) (Lord et al., 2012), and the Childhood Autism Rating Scale (CARS-2) (Schopler et al., 2010).

The CARS-2 (Schopler et al., 2010) measures 15 core deficit behaviors associated with autism spectrum disorders, including relationship to people, imitation, adaptation to change, and emotional expression. The standard form (CARS-2-ST) is appropriate for youth younger than age 6 or youth aged 6 and older who have a notable communication deficit or an IQ of 70 or lower. The high-functioning form (CARS-2-HF) is appropriate for youth aged 6 and older with verbal fluency and an IQ of 80 or higher, which allows the assessor to differentiate comorbid challenges.

The ADOS-2 (Lord et al., 2012) has five modules, and each module is appropriate for children at different developmental and language levels. The assessor will choose which module to use based on the relative fluency and complexity of language used by the child, ranging from no expressive use or receptivity of words to fluent language. The modules assess the child in planned social occasions or social situations that typically produce a social response in someone. These occasions are referred to as presses from the assessor, and they are attempts to engage the child in imaginative activities, social role plays, or other social-communicative behaviors.

Differential Diagnosis Considerations with Autism Spectrum Disorder

ASD shares features with several other psychiatric conditions, including (but not limited to) generalized anxiety disorder (GAD), social anxiety disorder (SAD), obsessive compulsive disorder (OCD), depression, and social (pragmatic) communication disorder (SCD). This can complicate diagnostic decisions, as symptoms of ASD may be misdiagnosed as another condition, symptoms of another condition may be misdiagnosed as ASD, or once a diagnosis of ASD is established, a comorbid diagnosis may be missed (or vice versa).

Many youths with ASD experience a significant amount of anxiety in their daily lives, and this is particularly true for youth with autism requiring little support (Gilliot et al., 2001). Youth with ASD may become anxious when their routines are disrupted, when they are overwhelmed by sensory stimuli, or when they are in unfamiliar environments and social situations (Wood & Gadow, 2010). A diagnosis of GAD, however, requires that anxiety is present more days than not across a wider variety of settings and situations due to pervasive worry, as well as the presence of physical symptoms of anxiety such as fatigue, muscle tension, and sleep disturbance (APA, 2013). In order to differentiate between anxiety stemming from ASD symptoms and a formal GAD diagnosis, it is necessary to assess the triggers and underlying content of anxious thoughts.

Both individuals with SAD and ASD may present with anxiety in (and leading up to) social situations (Spain et al., 2018). As a result of this anxiety, both categories of individuals are likely to avoid social situations and may also show social skills deficits (Spain et al., 2018). However, the source of the anxiety can differentiate the two; individuals with SAD experience anxiety in social situations due to fear of judgment and negative evaluation from others (APA, 2013). On the other hand, individuals with ASD may become anxious in social situations because they have a hard time interpreting nonverbal social cues, engaging in nonverbal communication (e.g., eye contact or gestures), and engaging in joint attention with others, thus reducing the overall quality of social interactions and making it difficult for youth on the spectrum to navigate (Tyson & Cruess, 2012). Of note, not all individuals with ASD feel anxious in social situations, as some may have low motivation or interest for social interaction to begin with (Tyson & Cruess, 2012). Conversely, many individuals with ASD are motivated to make social connections but lack the social skills to do so; if these individuals also experience much anticipatory anxiety leading up to social situations due to a fear of negative evaluation from others, they may also meet criteria for SAD (Bellini, 2006). Youth with high-functioning ASD who are more self-aware about their social skills deficits are more likely to experience comorbid SAD (Tyson & Cruess, 2012).

Restricted and repetitive behaviors are hallmark symptoms of both ASD and OCD (Ruzzano et al., 2015). Both youth with ASD and OCD may adhere to strict routines, have a need for sameness in their everyday environments, and have perseverative thoughts or intense preoccupations (Griffiths et al., 2017). However, feelings elicited by these behaviors and thoughts may help differentiate between ASD and OCD symptoms. While obsessions and compulsions in OCD are ego-dystonic (i.e., regarded as intrusive and distressing), preoccupation with special interests and adherence to routines in ASD are generally ego-syntonic (i.e., pleasurable or rewarding) (Griffiths et al., 2017). Of note, features of ASD and OCD are highly comorbid, and comorbid ASD/OCD is associated with greater functional impairment across domains and poorer treatment response (Griffiths et al., 2017).

Depressive disorders and ASD are both characterized by notable social withdrawal and flat affect; other shared features may include irritability, low motivation, executive function challenges, problems with eating/appetite, sleep disturbances, and perseverative thinking (Pezzimenti et al., 2019). However, clinicians must keep in mind that symptoms of depression are a departure from an individual’s “typical” functioning; this may be harder to assess for more enduring depressive symptoms lasting over the course of several years, as is the case for persistent depressive disorder (also referred to as dysthymia) (APA, 2013). In any case, clinicians should assess when symptoms began to elucidate whether they may be transitory, which may be more indicative of depression; furthermore, if symptoms have become more severe over time relative to baseline functioning, this may also be indicative of depression (Pezzimenti et al., 2019). Additional considerations should include individuals’ unique symptom etiology. For example, the reason for social withdrawal may help clarify whether it stems from depression and/or ASD, as youth on the spectrum are less likely to be socially motivated or may want to avoid sensory overload in social settings. Similarly, changes in eating patterns may be attributed to depression and/or ASD, depending on the underlying issue; depressed youth may eat less due to reduced appetite, while youth on the spectrum may eat less due to tactile sensitivity to various food textures, resulting in a limited range of tolerable foods.

The social communication deficits that must be present for individuals to be diagnosed with ASD are not always accompanied by restricted and repetitive behaviors (Gibson et al., 2013). In these cases, a diagnosis of SCD may be more appropriate. Individuals with SCD present with many of the same social skills deficits, including difficulty communicating in a manner appropriate to the social context, deficits in changing communication to match the needs of the listener, difficulty with reciprocal conversation, and impairments in interpreting nonverbal cues and figurative speech (APA, 2013). Note that SCD should not be diagnosed alongside ASD; if a child shows social communication impairments, diagnosis will hinge on the presence of restricted and repetitive behaviors and interests (Gibson et al., 2013).

Intervention

Intervention with autism focuses on improving quality of life and reducing functional problems; unlike some other disorders, there will be no remission of symptoms or cure with intervention for autism. Considering the variance in presentation of youth with ASD, an expert panel (Maglione et al., 2012) identified core aspects of care that include aims to improve social functioning and play skills, improve communication skills (both functional and spontaneous), improve adaptive skills, decrease nonfunctional or negative behaviors, and promote academic functioning and cognition. Three core intervention models emerge to address core autism or general symptoms: behavioral model, social-communication focused model, and multimodal developmental model (Tachibana et al., 2017). The Center for Disease Control and Prevention (2019) highlight other specific therapies, including applied behavior analysis, social skills training, occupational therapy, physical therapy, and the use of assistive technology (e.g., use of communication boards or tablets to assist with communication with others).

An intervention approach that addresses the core deficits of ASD is applied behavior analysis (ABA) (Warren et al., 2011). Literature reviews (Seida et al., 2009) indicate behavioral approaches in general, with the understanding that some form of treatment is better than no treatment at all. Psychopharmacology evidence is limited, with a trial of risperidone showing success for the core symptoms of autism; however, because of its neural diversity, it is difficult to generalize to all presentations. (McDougle et al., 2005). More often than not, pharmacological interventions will focus on treating the comorbidity associated with the child’s presentation.

As we see with Leo, a behavioral schedule was created; this is a common antecedent management strategy in ABA and incorporates the use of visual cues. There were specific behaviors being targeted for increase. He would access his highly preferred YouTube songs for demonstrating 3 out of 6 school hours with appropriate tone of voice, and the aim of this intervention was to positively reinforce a behavior. It is important to consider where Leo’s developmental age and chronological age may diverge; he may still operate in the realm of fantasy due to his developmental age and may have cognitive barriers to engaging in cognitive oriented treatments. With the developmental systems perspective in mind, it is critical to consider the personal factors such as these, the caregiving relationships and the environmental contexts that could serve as a holding environment. Lastly, it is important to consider sensory-based activities to supplement the ABA style interventions (e.g., holding kinetic sand during a social skills training).

It is worth noting that working with autistic youth can be challenging and there are potential harmful behaviors to contend with such as biting, hair pulling, slapping. crisis intervention approaches such as Handle with Care should be considered given the potential for physically unsafe scenarios. Our interventions are meant to address these problematic behaviors, but the spirit of our intervention matters.

Clinical Dialogues: Autism Spectrum Disorder with Richard Weyler, MD

Sean E. Snyder, LCSW: Dr. Weyler, could you start us off from the beginning? What is it like for you with engagement of families that come to you for evaluation or for other autism related services?

Richard Weyler, MD: Engagement depends on where the child actually falls functionally. As to the techniques, lower functioning children who have intellectual disability would be a much different approach than a kid who maybe is having some social issues but does meet criteria for autism.

Snyder: You’re touching on the whole nature of autism being a spectrum. So, engagement is dictated by an assessment to see what kind of comorbid challenges or pathologies are present, and many times, it’s the comorbidities that tend to dictate how you interact with them?

Weyler: Yes, exactly.

Snyder: What about with parents? How can you work with parents who really are experts in their children’s lives?

Weyler: From my practice, I have seen two common trends with parents. One set are those who are very invested in having an autism diagnosis, and the other set who are kind of hard by the diagnosis. And then there are those who fall between those poles. When engaging the parents, you really have to take the temperature and read where they’re at and approach them in a way that’s going to make them comfortable with treatment.

For example, for parents who don’t accept the diagnosis, I like to try to still keep a provisional diagnosis to keep the kids in treatment because I want to keep the patient engaged. I don’t want to chase anybody out of treatment while trying to get my point across that their kid has a certain diagnosis. So, I’ll try to keep them engaged as best I can, and that allows me to get them into the same treatment that they would be getting, whether or not they had a diagnosis. So I’ll give a provisional, like unspecified developmental disorder. That could ease the parents into it a little bit more, but in giving that diagnosis, it doesn’t stop me from being able to implement treatment.

Snyder: Do you get the sense with parents of children being evaluated for autism, that there’s secondary gains that are common with other diagnoses like ADHD or ODD? In practice, I’ve seen parents almost hoping for a diagnosis in hopes of getting services or other kinds of gains. Do you see that happening?

Weyler: I would say the answer to that question is nuanced because malingering exists in the DSM for a reason, but anecdotally, I don’t tend to see it. I feel like most of the parents are, by the time they get to me, invested in the child because they’ve already gone through their pediatrician, and things are really serious by the time I see kids. Usually these families are struggling.

Snyder: At that point, they’ve already kind of put in all that effort and investment because of their child’s functioning. On the opposite end, with the parents that are not overly invested, is it because they are in disbelief of the diagnosis? Is it something where they have self-blaming behaviors? Is it a problem of a lack of education about autism?

Weyler: What I see from those on the opposite end of the investment spectrum, are a lot of people who are overwhelmed. It requires a lot of time and energy with the initial evaluation phase, and for follow-up appointments, sometimes the family has to take off an entire day to get that kid to that appointment. A lot of what I see here is people struggling to be able to still be employed and get their children to have a bunch of appointments and just manage. I’m usually pretty empathetic when people are having trouble following through with recommendations.

On the other hand, you do have to be firm because if nothing changes, nothing changes. It can be a delicate balance in keeping people engaged and engaging in treatment. And then, I always like to say, “if you don’t have a patient, you don’t have a patient.” Keep people engaged and be as empathetic as possible because I see lack of engagement as a function of some barriers to treatment that we need to address that maybe we’re not able to see right away. So, I don’t believe that anybody who’s gone to the trouble of getting their kid all those evaluations is then not serious about treatment and that maybe a lot of other things going on.

When I get the sense of a lot of barriers, I usually will start increasing the levels of care and increase frequency that I see people. The psychotherapy part of me would say that your countertransference is that you’re annoyed with people that they’re not following through, and that’s probably the person you need to see more frequently.

Snyder: And not less frequently. Yes, we need to consider our own countertransference in all of this process, which can be a barrier to engagement and treatment. So one last thing with barriers. What about caregiver support? How do you bolster support systems with caregivers, for instance, with respite services?

Weyler: To start, respite is where caregivers and people who take care of people who need a lot of care whether it be an older, sick relative or a child with developmental disabilities. There are programs out there where they can get a break or have an extra personal care assistant or nurse to come to your house on Saturday afternoon, so the parent can go and have a cup of tea without somebody needing something from you or, worst case scenario, some of the children are aggressive. The life of parenting can turn into trying to keep the child from hurting themselves and others at certain moments in time. It’s nice for a parent to take a break and not have to referee fights between siblings for four or five hours. Some programs will take kids who are eligible, financially and behaviorally (usually the ones with more severe behavior). There are a lot of references therein Autism Speaks.

One question I hear from students a lot is about parents being invested in the idea that the children will always have to live with them. So, I do come across that scenario from time to time. You have to read between the lines of that statement and take a developmental approach for both the child and the adults. A place where a lot of parents are at developmentally when they’re child age is the big concern is that you’re going to die, and no one’s going to be around to take care of your children. When I hear parents say, “They’re never going to leave my home,” I think the message is really “Who’s going to take care of this kid after I die?” That can open up another conversation of motivation to getting the youth adaptive support, getting them working and getting them linked up to transitioning into adult services, or, for my intense cases, get them into an assisted living facility while the parent is still alive. One of the things you want to see as a parent is that your children are able to take care of themselves in the world. Consider it an extension of generativity. And this is really about engaging the family across the lifespan.

Snyder: Okay, great. So, last thing with the engagement piece, we need to look at different domains, specifically school or the workplace for kids. What’s the best approach when working with teachers and the school system to give students support in the least restrictive environment?

Weyler: My response isn’t only autistic kids per se. These are children with developmental disorders. In general, there are programs under the name of life skills, but with these youth, there are enhanced life skills programs where they’ll spend part of their day outside of the school learning how to work as a customer associate in a deli, learning how to take vital signs at the doctor’s office, or doing circulation duties at a library. They’ll rotate through different fields where they can figure out how they can be fully included within the fabric of society. They get the reward of being able to take care of themselves and contribute and get a paycheck at the end of the week.

Snyder: Why does it seem like we are seeing more ASD diagnoses? Are there still gaps with subpopulations like males vs females still?

Weyler: Diagnoses have leveled off, although it has increased somewhat from 2010 until now. Now, it’s like one in 58 kids. The gender gap is starting to close and same with racial/ethnicity gaps. I think it’s because we’re getting better at diagnosing it, and we’re getting better at screening kids and differentiating diagnoses in our assessments. For instance, kids who would have been written off as having schizophrenia or kids who have been written off as intellectually disabled are now being more accurately diagnosed with ASD.

Snyder: That makes sense. On one hand, we’re being more precise with our measurements and standard ways of looking at it. I’m sure awareness campaigns like Autism Speaks have made an impact, now with schools and pediatricians becoming more aware. So maybe this is a matter of better dissemination practices. And I’m sure there is still more advanced research that is being disseminated and waiting uptake from the general clinician population.

Weyler: I have a personal anecdote that may address some of this. When I was deciding what field to go into, I considered neurology. I found that my problem with going into neurology is that they’re really great at diagnostics, but there aren’t a lot of cures for anything neurological at this point. I don’t think there will be until we get into some pretty heavy trials with stem cell research that can start repairing the central nervous system. We could start diagnosing and repairing the central nervous system to rewire itself.

I don’t think that there’s going to be any advances in treating the core of autism. There are no medications that directly treat autism. We treat autistic kids’ symptoms, and this gets tricky when trying to advocate for advanced levels of care. I can’t get somebody hospitalized with an autism diagnosis, so there has to be something else going on that caused them to be hospitalized. Their neurological baseline isn’t enough for intensive care.

Early intervention is key because the brain is a lot more plastic than we initially thought, but it’s still considered to be a neurological baseline. From that baseline, you have to think in a parallel way with assessment and treatment. For instance, we could have kids with ASD as a baseline but also demonstrate hyperactivity and impulsivity, which falls under ADHD criteria. In a large percentage of ASD youth, that phenomenon mirrors the general population. These kids have different options with treatment, and some will respond to ADHD meds.

With assessment, consider other transdiagnostic features. For instance, OCD has some overlap with the core features of Autism, like ritualistic and repetitive thoughts and pattern of behaviors. ASD youth whose symptoms resemble OCD could be much more refractory to meds because OCD is refractory to medication treatment in typically developing children. Another diagnostic example: it’s important to separate out ASD and psychotic symptoms, too. You have to be careful because autistic kids will believe stuff. I have an autistic child who believes that he is a werewolf, and it’s more of around a very firmly held belief. For him, he could get really aggressive when it’s time to be a werewolf.

Snyder: Right. Our class discussed how it’s important to consider developmental age, especially with a concept like magical thinking, in folks with intellectual disabilities. A person that is chronologically 30 years old but developmentally five years old will have thoughts that might seem like they are psychotic, but really, it’s magical thinking, like “I’m a werewolf.” This was from a youth I came in contact with at our clinic, and he was inspiration for our case vignette Leo.

Weyler: Right and a lot of folks won’t see the magical thinking if they don’t know they’re looking at. They’re thinking, “Oh, somebody who thinks they’re a werewolf, and they talk to themselves, they must be schizophrenic,” and I think, that perspective changes the course of treatment. Giving him or her high doses of medications that they don’t need and really not getting at the root of the problem. There’s no medication for an overall belief that you’re a werewolf.

And on the subject of medications, it’s important that students know that some medications have benefits that don’t outweigh the risk. And for some, like antipsychotics, you have to get really good benefits from it because these medications can lead to high blood pressure, weight gain, diabetes, and high cholesterol. Diabetes and high cholesterol down the line lead to really bad complications, and we’re talking about really young people here! You really have to be sure about what you’re diagnosing and how you are weighing long term risks and benefits of particular treatments.

Snyder: I think you bring up a good point about long term care. So, an indirectly related point, when you bring up diabetes. There is no real cure for type one diabetes. Similarly, there is no cure for autism per se. We should think of it in terms of chronic illness or disease. We have to really treat it with the same perspective of treating chronic illness like type one diabetes. With diabetes, it’s something patients manage with ongoing professional support and lifestyle changes or adaptations. With ASD, it’s really about management of certain symptoms, creating a support infrastructure for the family, and considering any lifestyle changes that support their overall quality of life.

Assessment led us to talk about medication treatment, so let’s stay on intervention. What about behavioral interventions? What are some of the interventions, then, that you typically recommend after you do your assessment?

Weyler: I tried to decide what kind of level of care they need; e.g., is this kid dangerous or can this child go home where they have busted out every window in their house and their parents have locked themselves in the bathroom and called 911? First, you must determine safety risk, which determines level of care and subsequent intervention.

After considering safety, I like to see if there is a family structure problem. There could be a family hierarchical problem where the parents have difficulty with disciplining the kids, and I might recommend family-based services. The treatment team goes to the home to provide services and considers the ecological and family systems within the home. Then there are lower levels of care like outpatient, and this really depends on the level of adaptive functioning the child presents.

So there is the level of care to consider, but within these modalities, I would generally start off with Applied Behavior Analysis (ABA) approaches. Part of the crux of ABA is that there’s a function to behavior. With autistic kids, the function might not be as clear because sometimes the function can be sensory or physiological. I’ve had many examples where a kid came in with a rotten tooth or an earache, and they ended up in a psychiatric hospital because he was being so aggressive, but the function wasn’t evident.

Snyder: To summarize, determine safety risk, determine level of care, consider the surrounding support. When treatment initiates, ABA is the starting point in order to look at functions of behavior. A clinician should consider sensory issues or less visible functions.

Weyler: And consider this is a spectrum, so there are so many ways to meet a child’s needs. There’s data that autistic kids respond to CBT, sometimes with treating comorbid anxiety and OCD. Behavioral treatments grounded in conditioning principles are key. Keep in mind that ABA is something people get their masters in, where they are basic principles, but there is a lot of nuance with translating it to practice.

For someone not trained with ABA or advanced behavioral technique, the idea of an extinction burst may throw off treatment. For those not familiar with the extinction burst, I will use the hungry puppy analogy. If feeding your puppy food off the table and the puppy starts getting sick, the vet says, “you have to stop feeding the puppy food from the table.” When you try to implement that strategy with the puppy and set boundaries, what does the puppy do the first night you say no? The puppy might fight, scratch, or even try to jump up on the table at first. Kids do the same thing when you try to implement a behavioral strategy and set limits. They will try to up the ante, and for kids with behavioral health challenges, an extinction burst can cause drapes to be ripped down in your house. The extinction burst actually means what you’re doing is working. Consistency is essential to behavioral conditions because even if you give-in one in 10 times, the give-in can reinforce the behavior you’re trying to lessen. That’s how the casinos make money; they give random reinforcement to keep people spending their money.

It’s important to think about parents in treatment with their kids because it’s going to increase their stress as well. They may see the burst and question the treatment team, saying “What are you guys doing; he’s getting worse!” So, it’s important to view this developmentally and within the family systems context.

Snyder: Students have asked me (and this is representative of our field during a pandemic), “What’s your take on the pandemic lockdowns and the needs of youth with ASD?” I feel like a lot of these kids kind of thrive in the school settings with learning life skills and having support like that. Now they’re kind of home. What would you say to families during the COVID-19 quarantine?

Weyler: This time is the opportunity for reengagement. This conversation would come with giving limits to people, and it is important when people can hear limits, that they feel like they’re being heard. So first, I would make sure that they were being heard. But I would go over what the recommendations are, and I would frame it as “you’re not stuck at home, you’re safe at home.” Education about the importance of following the CDC recommendations is critical for anyone engaged in patient care.

From a behavioral focus, I would also recommend that they make a schedule and they put the schedule and a big piece of poster board or cardboard, whatever, and that they continue to evolve that schedule throughout the day every day. Autistic children especially thrive on sameness. All the techniques that they use in elementary schools and preschools for transitioning kids and keeping them moving throughout the day, you can do all the same stuff at home. For example, 9:30, we’re doing spelling; 9:30 to 10, we are going to color; 11:30 to 12:30, we’re going to break and have lunch. It also keeps the parents engaged and working through the schedule throughout the day, even though they think it’s for the kids. And it’s also going to help them. And because they can even schedule time in like, okay, this is the time that you’re going to color, and I’m going to go do what I need to do.

I would recommend people get through your day without too much negative emotion and everybody getting along. If it gets to the point where implementing a class schedule in your home is causing meltdowns, I would trust peoples’ parent instincts.

Snyder: With schedules, it’s good for the anxiety that people have in general! Also, you may need to coach parents on distinguishing what are new behaviors popping up in this environment that weren’t at school. There may be a need for home-based behavior scheduling and behavior reinforcements to see what behaviors need to be reinforced or extinguished at home.

Weyler: And they will need some start up support with any telehealth platforms out there! The youth will need to adjust, and it could be the case that they are more comfortable in the privacy of their own home versus in my office. Like with anything, consistency with the intervention, even the platform of intervention delivery, will serve clients best.

To sum up everything, a good working relationship will help with developing safety, the appropriate level of care, and the best treatment that focuses on promoting the well-being of the family.

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