Clinical Impact Statement: This article provides an overview of common challenges faced by the early-career clinician when working with teens and young adults with autism in the therapy room, and evidence to assist in treatment planning. With the rise in the identification and diagnosis of autism spectrum disorders and the lack of trained therapists to work with these clients, our field is in need of continued research and professional development to address this growing problem. Specific problems, such as stimming, anxiety, and suicide, as well as treatment approaches, such as CBT, psychoeducation, and social identity theory, are discussed and recommendations for the early-career clinician are provided.
For the early-career clinician, getting started in the world of therapy in either private practice or an outpatient clinic can be both overwhelming and exciting. After graduation, many of us are in this state of transition out of student mode and into professional mode. Developing confidence as a young professional, while also building a caseload, can be challenging as we face clients who present with more complicated issues than we have encountered during training. Individuals with an autism diagnosis represent one specific subpopulation for whom more than half of mental health providers have not received specific training (Williams & Haranin, 2016). In particular, adolescents (ages 14-22) with autism spectrum disorders (ASD) present a unique set of challenges by which even the seasoned clinician may feel intimidated.
Recent figures suggest that one out of 59 children in the U.S. have been identified as having an ASD by the age of eight, an increase from one in 68 in 2012 (Baio et al., 2018). This represents a large number of children who will be growing into teens and young adults within the next 10 years. Over the last two decades, the awareness and visibility of ASD diagnoses have increased, but the research informing professionals in helping those children transition into young adulthood is still lacking (Hendricks & Wehman, 2009). ASD is considered a lifelong diagnosis, though prevalence rates among teens and young adults are still forthcoming. Although precise prevalence data are not readily available, mental health problems often persist from childhood into adolescence (Simonoff et al., 2013), and some suggest problems may be exacerbated during the teen years due to difficulties with social norms, anxiety, and depression. Furthermore, the risk of suicide during the adolescent years has been found to be notably higher for those with an ASD diagnosis than neurotypical peers (Cassidy et al., 2014), despite this being an understudied phenomenon (Richa, Fahed, Khoury, & Mishara, 2014). In addition, an estimated 50,000 teens with ASD age out of services provided by their schools on a yearly basis (Baio et al., 2018). This suggests these individuals will need community-based support, like outpatient therapy, to fill the gap in services. Mental health professionals thus need to be astute to the specific needs of this population.
With half of mental health professionals having little, or no training in autism, and fewer than 16% of therapists having supervisors with expertise in working with clients with autism (Williams & Haranin, 2016), the lack of confidence and support in working with these individuals proves to be a continuing issue in our field. Beyond that, upwards of 70% of individuals with ASD having co-occurring mental health issues (Joshi et al., 2010), which suggests a huge need for effective therapeutic resources in the community. While there has been a major push for evidence-based practice, particularly in the realm of working with individuals with ASD, much of the research has been on younger populations (Wright, Brooks, D’Astous, & Grandin, 2013). With the lack of consistent evidence-based practices for adolescents and young adults with ASD in the therapy room, combined with the wide variability in skills and abilities within the ASD population, we argue here for an “evidence-informed” therapeutic approach. This type of clinical decision-making approach derives from the medical literature and may be more appropriate as the clinician considers the contextual variables associated with individuals with ASD. In following an evidence-informed approach, the clinician takes that most supported evidence about the client’s presented issues and uses that information to inform the treatment planning based on the individualized variables of that client.
The Process of Therapy With Adolescents With ASD
The process of therapy for clinicians who work with individuals whose symptoms fall on the spectrum requires a unique subset of therapeutic skill that is not always taught in graduate training. While it is important to utilize all of the common microskills (e.g., showing empathy, active listening, open-ended questioning) with the ASD population, it is also important to recognize these teens and young adults may have an additional set of needs for the therapy room. For instance, they may not have the cognitive capacity to follow metaphors and/or analogies that are often used in therapy. Furthermore, due to challenges with social nuances, a client with ASD may not have the skill to speak up when they don’t understand a question or to correct a misinterpretation that a therapist makes. Using concrete and relatable examples will minimize the chances of misunderstandings. It should be noted that the client’s inability to react appropriately to a clinician’s questions might have less to do with autism, and more to do with the clinician’s inability to ask the question correctly. One should continue to check in with both the client and, as appropriate, the family, to gauge how the client is interpreting personal progress in therapy.
Despite the DSM-5 (American Psychiatric Association, 2013) collapsing all forms of autism into one diagnosis (ICD-10, F84.0), there will still be clients who identify with high-functioning autism, Asperger syndrome, and other pervasive-developmental disorder diagnoses. Since autism falls along a continuum, it is often more important for the clinician to focus on the client’s abilities, strengths, and areas of need, rather than the specific diagnosis. This will also make utilizing the evidence-base to inform treatment a more achievable goal for the clinician—as we can search for therapies related to anxiety, depression, or social deficits.
In working with teens and young adults, developing appropriate goals that are consistent with their abilities and objectives should be a collaborative process. Many clients with ASD will still require significant support from parents and teachers, so including them in goal-setting will be critical for success. Some specific goals that may be common for teens and young adults include goals related to personal hygiene, social connections, and independent living skills. Keeping in mind that males are four times as likely to be diagnosed with ASD (Baio et al., 2018), the clinician should become particularly invested in researching common issues for males presenting with these symptoms.
Engaging the Family
When the client experiences more mental health problems, parents’ and caregivers’ levels of stress also increase; beyond that of the diagnosis of ASD alone (Kerns et al., 2015). In addition, helping caregivers determine the right balance of freedom and independence for their adolescent’s developmental level can be challenging. Moreover, parents and guardians of individuals with an ASD diagnosis may have become accustomed to fully supporting their child for much of their lives; this makes that transition even harder, because they may become anxious with this release of control. Common challenges include determining when to give freedom with technology and social media; when it is appropriate to date, drive, work; and navigating differences between what each parent thinks is most appropriate—along with many others.
Although it is important to support the individual with ASD, the clinician should also recognize the need to honor the challenges of siblings. Frequently, the siblings of individuals with ASD can feel forgotten or less important because there is so much emphasis placed on supporting the client with ASD. Connecting with a local applied behavior analysis (ABA) clinic or autism treatment facility for additional treatment options, such as support groups for parents or siblings, could also be recommended.
Using the Evidence to Inform Treatment
For some clients, insight-oriented therapies may be not be a good fit for their level of cognitive and emotional functioning. Literature reviews may be a good starting point for clinicians working with adolescents interested in cognitive-behavior therapy (Kerns, Roux, Connell, & Shattuck, 2016; Weston, Hodgekins, & Langdon, 2016; Wood, Fujii, & Renno, 2011) and possible psychosocial interventions (Bishop-Fitzpatrick, Minshew, & Eack, 2014). Behavioral skills training is a performance-based and competency-based training protocol to teach specific complex skills that has had promising results (Parsons, Rollyson, & Reid, 2013). This type of approach could be used with either caretakers or clients who wish to improve specific skills. The process entails clearly describing the target behavior goal (e.g., Andrew will load and unload the dishwasher every other day), modeling the target behavior, providing immediate feedback to the client during practice of that behavior, and continuing a level of support until feedback is no longer needed. The use of video modeling, through YouTube or other services, is also a helpful strategy, as it clearly shows the client exactly what the task should look like (Franzone & Collet-Klingenberg, 2008). Researchers have developed a practice-based approach to analyzing the function of behavior that may also be appropriate—including operationally defining the behavior and gathering data (Powers, Palmieri, D’Eramo, & Powers, 2011).
Recent research into relevant mental health issues has demonstrated a correlation between social identity or autism acceptance and mental well-being in adolescents with ASD (Cage, 2017; Cooper, 2017). Moving from a “disorder” and medical model of diagnosis, to a well-being approach for ASD can significantly change the negative impact of the diagnosis as the social identity of an adolescent with ASD varies from a negative association to a positive association. The perception of general societal acceptance, and perceived acceptance by family and friends, directly impacts the level of depression and stress reported (Cage, 2017). Furthermore, individuals with positive self-esteem, who reported being proud of the autism identity, showed significantly lower levels of depression and stress (Cooper, 2017).
Social identity theory has broad implications for clinicians, as social identity can be an avenue for positive change. Increasing access to autism groups run by people on the spectrum can improve positive identification. Social groups advocating for neurodiversity are increasing online, in social media, and for students and teens with ASD. These groups can be a source of not only improved self-esteem but pride in their social identities. Moreover, online interactions might be preferred, because there are no physical, social norm obstacles. They can become a shared basis for self-definition from a positive, instead of a negative, identity (Cooper, 2017). Working with ASD on self-disclosure and self-advocacy can affirm positive social identity. Reviewing idiosyncrasies to highlight both challenges and strengths can help to build a positive social identity. When possible, including family members in this approach can help the client perceive higher levels of external acceptance. Psychoeducational groups, like PEGASUS, have been shown to have preliminary effectiveness in positive self- and ASD-awareness (Gordon et al., 2015).
Self-stimulatory behaviors (i.e., stimming) represent one of several behaviors unique to the ASD population that also lacks informative research at the teen- and young-adult level. Many parents, teachers, and education professionals work to reduce stimming, without replacing the behavior and failing to understand its importance. Stimming is often a coping skill and can be used positively, with a calming, grounding effect. However, stimming is also a sign for the clinician that the client may be under stress that could escalate to more unhealthy behaviors (e.g., aggression, hair pulling, or other self-injurious behaviors). Working with ASD, it is important not to try to eliminate stimming altogether, but rather find positive stimming outlets. Hand squeezing, leg shaking, rocking, arm flapping are all safe and effective stimming behaviors.
Knowing the Resources in Your Community
Assisting with the Transition Process
It is now both possible and advisable for individuals with ASD to engage in a postsecondary plan, regardless of the level of ability, whether it be directed toward college or the workforce (Hart, Grigal, & Weir, 2010). Transitioning from high school should include plans for increased independence, gainful employment, post-secondary education, and increasing social connections—and those plans should begin as early as possible. Many school districts have transitioning plans in place by the eighth grade, but sometimes transition plans are not even considered until well into high school. The clinician should collaborate with parents and school personnel as soon as possible to give input into the best individualized plan for the client. This transition plan should include the student’s specific goals (e.g., four-year college, two-year college, employment), current level of functioning, and practical steps toward achieving those goals throughout high school (Szidon, Ruppar, & Smith, 2015). These might include obtaining a driver’s license, attending college fairs, explicit teaching of social skills, and evaluation of assistive technology needs, among other pre-adult life skills. Beyond that, this transition plan should include the supportive individuals responsible for assisting the individual in meeting these goals and holding the client accountable.
Researchers have developed preliminary guidelines for the transition process that could also be helpful. For instance, recommendations about high school curriculum, job skill development and social skills training should be included (Hart et al., 2010; Wehman et al., 2014). In addition, the National Longitudinal Transition Study-2 provides information for the clinician about specific variables that are of importance during the transition to adulthood (Wagner, Newman, Cameto, Garza, & Levine, 2005).
Increasing Independent Living Skills
When students have more functional independence skills, they are more likely to have more success after high school, regardless of their long-term goals (Shattuck et al., 2012). For instance, skills like telling time, counting money, understanding signage in public, and using public transportation are critical for interacting independently as an adult. Therefore, the clinician may choose to include these very specific sub-goals in their treatment plans. While these may seem less relevant for outpatient therapy, these increased skills in independence are likely to directly relate to the client’s overall mental health in a positive way. Utilizing a quick checklist of adaptive skills to assess the client’s current functioning would be a good place to start, though formal assessments of adaptive functioning could also be appropriate.
Strategies for the College Path
For clients who are interested in a two- or four-year degree, clinicians can assist caregivers and clients in making informed decisions collaboratively. Clients who are still in high school may want to take college courses as a dual-enrollment option, which allows the client to experience the college environment while still having the close support of teachers and parents (Adreon & Durocher, 2007). Depending on the client’s interests and abilities, trade or vocational colleges may also be a good option. These options minimize the need for general education courses, and have increased job-specific training opportunities that may seem more relevant for the client’s chosen path. While in high school, many students rely on the support of teachers and parents to provide guidance for difficult situations. Upon leaving high school, clients with ASD will have to adjust to many changes, and the level of support at college is significantly reduced from the support received through special education or 504 plans. In the therapy room, clinicians could prepare the client for college life through creating a checklist of skills required to be successful at each type of institution. For instance, at a four-year college, the client will need to manage schedules, roommate struggles, food options, and appointments with faculty, among many other tasks. At the two-year college, the student may need to arrange transportation to and from classes, make appointments for academic advising, join student clubs, and so forth. The fit between the client and the institution is critical for success (Adreon & Durocher, 2007), so a collaborative evaluation of these factors should be considered.
Ideas for the Workforce Path
When working with clients who are not interested in a two- or four-year degree, the clinician should connect with local resources for job support. Specifically, employment services such as vocational rehabilitation have been helpful in connecting individuals with ASD and other disabilities to jobs (Burgess & Cimera, 2014). Vocational rehabilitation also provides services such as on-the-job training, interviewing practice, and career guidance. Other options within the community might include sheltered workshops whereby individuals with ASD could receive additional training and mentoring prior to entering the job market. Connecting with other career-counseling resources within the community may also be advisable.
Future research is needed to continue to expand the current knowledge about working with teens and young adults with ASD. In the meantime, utilizing the current evidence, combined with the specific needs and strengths of the individual client, is our best course of action with these clients. In addition, providing continuing professional development to clinicians and, in particular, their supervisors, would also help increase the number of professionals competent in providing these services.
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