The Evolution of Facing Our Fears: Where we’ve Been and Where we are Going

Written by: Tamara Rosen, PhD. and Judy Reaven, PhD.

As many of us are aware, youth with autism spectrum disorder (ASD) often experience significant symptoms of anxiety, moreso than children without ASD. In fact, a recent study by Kerns and colleagues (Kerns, Rast, & Shattuck, 2020) found that the lifetime prevalence of anxiety disorders in ASD is close to 40% – a rate 2 to 5 times higher than that for other children with special health care needs (but not ASD). These findings converge with previous studies finding higher rates of anxiety in ASD compared to other samples or the general population (see Leyfer et al., 2006; Simonoff et al., 2008). Importantly, anxiety symptoms can interfere with many aspects of life, including participation in home, school, and community settings (Adams, Simpson, & Keen, 2018). Youth with ASD display “traditional” anxiety symptoms that are similar to those shown by neurotypical children, such as fear of separating from parents, worry about future events or making mistakes, and anxiety around social interactions.  They may also display fears or worries distinct from those seen in neurotypical youth, such as worry about accessing a preferred interest, fear with a very specific focus (e.g., phobias of pizza bubbles or men with beards), worry around changes to routine, or anxiety when anticipating an unpleasant sensory experience (e.g., loud noises; Kerns et al., 2014; Kerns, Winder-Patel, et al., 2020).

Fortunately, there are effective treatments available for youth experiencing anxiety. Cognitive-Behavioral Therapy (CBT) has garnered 50 years of strong research support, thus establishing it as an effective, evidence-based, and first-line treatment for youth with anxiety (Higa-McMillan, Francis, Rith-Najarian, & Chorpita, 2016). In CBT, the client is supported in developing strategies to manage anxiety, including healthier and more realistic thoughts, somatic management strategies such as deep breathing or progressive muscle relaxation, and gradually approaching feared objects or situations (e.g., Abramowitz, Deacon, & Whiteside, 2011).

In the past 10-15 years, we have seen the development of CBT programs created specifically for youth with ASD (e.g., Facing your Fears; Reaven,  Blakeley-Smith, Nichols, & Hepburn, 2011; Exploring Feelings; Attwood, 2004) as well as adaptations to CBT programs originally developed for neurotypical youth (e.g., Cool Kids; Chalfant, Rapee, & Carroll, 2007; Behavioral Interventions for Anxiety in Children with Autism; Wood et al., 2009). There are now many Randomized Control Trials (RCTs), review articles, and meta-analyses of these programs, which suggest that overall, CBT is an effective anxiety treatment for youth with ASD (Perihan et al., 2020). While this increased attention and support for CBT in ASD is incredibly positive, this has not always been the case. Around 18 years ago, there was virtually no research on CBT for individuals with ASD, while that for neurotypical individuals was flourishing. In fact, there was little research available on treating anxiety in ASD at all. Of the available studies back then, most used purely behavioral approaches using a case study or single-subject design, and the quality of those studies was variable (for a review, see Rosen, Connell, & Kerns, 2016). The state of the literature mirrored what was going on clinically, in that mental health providers felt ill-equipped to treat anxiety symptoms for clients with ASD, and ASD providers did not feel comfortable treating co-occurring mental health symptoms in their clients. In other words, the silo that we still see today (see Maddox et al., 2020), and that many of us are working to bridge, was negatively impacting the availability and accessibility of anxiety treatments for youth with ASD.

The Facing Your Fears (FYF) Program (Reaven, Blakeley-Smith, Nichols, & Hepburn, 2011; Reaven et al., 2012, 2018), was born out of an attempt to bridge this treatment gap. FYF was designed for youth with ASD, wherein CBT approaches were adapted to make them more accessible for this population. Recognizing that most clinicians at the time had experience either in CBT or ASD (but not both), the program was developed under the principal that experience in one of these areas, and not necessarily both, was sufficient for the delivery of FYF. Additionally, with a user-friendly manual, the CBT treatment could eventually be more easily implemented by mental-health or ASD providers.

FYF is an outpatient, multi-family, evidence-based CBT group treatment for children and adolescents ages 8-14 with average intellectual abilities (soap box on the latter criterion to follow), and a primary co-occurring anxiety diagnosis (social, generalized, separation anxiety, or specific phobia). If other co-occurring conditions are more impairing (e.g., depression, OCD) than anxiety symptoms, then FYF may not be the right fit. The group consists of 4-5 families who meet for 90-minute weekly sessions for 14 weeks. Adaptations to core CBT content include opportunities to practice social skills, user-friendly visuals and worksheets, and hands-on activities. Additionally, parents attend all 14 sessions, and participate in the comprehensive FYF parent curriculum.

During the first half of the program, the focus is on anxiety psychoeducation and skill building. Through activities, discussions, and worksheets, participants establish a shared vocabulary for emotions (Attwood, 2004), identify situations that lead to anxiety, how the body feels when anxious, strategies for managing anxiety (e.g., helpful thoughts, relaxation strategies) and increase motivation to work on anxiety symptoms. A crowd favorite is often the “worry bug” activity, in which participants learn to “externalize” their symptoms; in other words, separate the person from the problem (March & Mulle, 1998). “Fear-facers” are empowered to take charge over their anxiety, and establish language that reflects this empowerment (e.g., “this is just my worry bug.”). In the activity, participants are encouraged to make a mental picture of their worry and then create an image of their “worry bug” using arts and crafts materials (e.g., Play-Doh, markers and paper). They then create a “helper bug” and squash their “worry bug.” In this activity, we have had the pleasure of seeing Ginny Weasley defeat Voldemort and “Why Hello Blade” slay “nightmare.”   

During the second half of the program, these skills and principles are put into action as participants identify their “fear-facing goals,” create exposure hierarchies, and face their fears in session. Participants are encouraged and rewarded for facing their fears in session, and for practice outside of sessions. As an example, a participant with a fear of flushing toilets might identify the following steps in collaboration with their parent(s) or guardian(s): 1. stand outside of the bathroom 2. stand inside the bathroom 3. stand inside the bathroom while someone else flushes the toilet 4. flush the toilet. The fear-facer and parents or guardians would also identify rewards for each exposure practiced in-session, at home, or at school (e.g., 15 extra minutes of screen time) and a bigger reward for reaching the target goal of flushing the toilet (e.g., a new video game).  

The first published efficacy trial of FYF was conducted in 2009, and there have been several clinical trials, including randomized control trials, since then (see Reaven et al., 2009; Reaven et al., 2015, 2018; Reaven, Blakeley-Smith, Culhane-Shelburne, et al., 2012; Reaven, Blakeley-Smith, Leuthe, Moody, & Hepburn, 2012). Most of the trials included school-age children, ages 8-14 years. Recognizing that adolescents with ASD are particularly vulnerable to anxiety, yet under-studied, FYF was also adapted for adolescents ages 13-18 years (Reaven, Blakeley-Smith, Leuthe, et al., 2012). Overall, results indicate that children and teens show significant reductions in anxiety symptoms following treatment in clinical settings compared to control groups. These studies also support the feasibility and acceptability of the program, with parents and participating youth generally rating the activities as “very helpful” or “helpful.”  To expand upon these findings and increase access to care for young adults with ASD, a college adaptation of FYF, funded by the Organizaton for Autism Research, and led by Drs. Brian Freedman and Jessica Monahan, will start this fall at the University of Delaware.

There have been additional adaptations to the original FYF program since its inception.  In 2016 (though perhaps ahead of our time!) Hepburn and colleagues examined the feasibility of delivering FYF via telehealth, with the overall goal of improving access to care for families who might otherwise not be able to access the intervention (e.g., families who live in rural areas and/or far away from specialty clinics). True to our goal of improving access for underserved families, we included youth with ASD with a range of intellectual abilities (the soap box is coming). Adaptations included fewer and shorter sessions, fewer families, more parent involvement, briefer parent-youth activities, and no youth only activities. Following the intervention, the treatment group showed significant reductions in anxiety symptoms compared to the wait-list comparison group. There were also increases in parents’ confidence in handling challenging situations with their children, and high rates of  program satisfaction reported by both parents and children. However, there were also some technical difficulties that sometimes interfered with service delivery or family participation (perhaps not all that surprising to many of us telehealth newbies!). Here at JFK Partners, we abruptly transtioned to delivery of FYF via telehealth last spring and got to see for ourselves what challenges the format can bring. However, we have also seen the positive treatment gains that outweigh those technical difficulties. Based on our own lessons learned, we have compiled a list of modifications to consider when implementing the program via telehealth, and we hope it is a helpful resource for other providers delivering the program via telehealth.  

Consistent with the original intent of FYF, implementation efforts are also underway. Most group trials of CBT take place in clinic settings where Caucasian or high-SES participants are over-represented. Thus, yet another treatment gap is the lack of accessibility to mental health services for students with ASD from traditionally underserved racial minority, ethnic minority, or low SES backgrounds. To increase accessibility, FYF has been adapted for schools for delivery by interdisciplinary school providers (Reaven, Reyes, Pickard, Tanda, & Morris, 2019). With the goal of maximizing sustainability, acceptability, and feasibility of the program, FYF – School Based Version (FYF-SB) was developed based on input from community stakeholders, including school providers and parents of children with ASD and anxiety (Reaven et al. 2020). Adaptations to the original FYF program include shortened session time (core CBT concepts were retained but shortened) and less parent involvement. The first published trial took place in Singapore and was delivered by allied educators (Learning and Behavior Support – AEDs/LBS; Drmic, Aljunied, & Reaven, 2017). Cultural adaptations were also made, such as using more culturally appropriate emotion vocabulary and video modeling. Findings demonstrated that parents and youth reported significant decreases in anxiety symptoms, including generalized, separation anxiety, panic symptoms and school avoidance symptoms. Parents reported that the program was useful and school staff reported high satisfaction with the program. A more recent pilot feasibility study conducted in public schools in Colorado area was also associated with reduction in anxiety symptoms (results from Reaven et al. are under review). Additionally, school-providers reported that FYF-SB was easy to deliver and benefitted their students, and many indicated that they planned to continue to deliver the program in the following school year.   

Although CBT has demonstrated effectiveness for the treatment of anxiety in youth with ASD, these programs have generally not been designed for youth with Intellectual Disabilities; in fact, these studies usually exclude individuals with lower intellectual disabilities (e.g., IQ below 70 or 80). There is also sometimes an erroneuous assumption that individuals with ID are unable to access the “C” in CBT and/or benefit from emotion regulation skills (Rosen et al., 2016). Therefore, most anxiety treatments for people with ASD and ID focus on purely behavioral interventions, though these strategies may be insufficient for addressing the generalized or social worries these individuals do in fact have (Dagnan and Jahoda, 2006).

Aware of the treatment gap impacting adolescents with ASD and ID, Blakeley-Smith and colleagues have adapted FYF for teens with ASD and ID. Adaptations include enhanced visual supports, more concrete language and simplified activities, increased video and in-vivo (e.g., live) modeling, and more emphasis on parent and school involvement. Preliminary findings show that teens with ASD and ID who participated in the adapted FYF program were able to successfully learn and independently use both cognitive and emotional coping strategies, challenging the existing paradigm. Hot off the press, results of our published trial from this year (Blakeley-Smith et al. 2021) also show that the program was feasible and acceptible, and associated with reductions in anxiety for participants. A randomized trial examining the efficacy of this program in more rigorous manner is planned to start this fall at JFK Partners (whether in the clinic or by telehealth due to COVID-19 remains to be seen).    

Our initial goal was to address the treatment silos that negatively impacted access to mental health services for individuals with ASD. Since the outset of FYF, we have made progress in bridging the treatment gap by adapting the FYF program in various capacities. That is, our research program has moved from a focus on school-aged youth with ASD, to adolescents with ASD, and more recently to adolescents with ASD and ID and college students with ASD.  To make the program accessible to more people with ASD, we have adapted the modality of program delivery to include telehealth and school-based settings. As mentioned earlier, FYF was designed with the assumption that experience in CBT or ASD, and not necessarily both, may be sufficient for the delivery of FYF. About 15 years later, we now have evidence that  school-based FYF can be delivered by non-mental health providers (at least in school settings), which can increase the capacity to serve anxious youth with ASD. Overall, we hope to continue to adapt the program to increase inclusion of individuals across the spectrum in the coming years. Interested in delivering the program for the clients you serve? Read more about Facing Your Fears here and feel free to contact Judy Reaven at judy.reaven@cuanschutz.edu for more information. Together we can support individuals with ASD!  

Tamara Rosen, PhD &
Judy Reaven, PhD

Tamara (Tammy) Rosen, PhD is a Postdoctoral Fellow at JFK Partners, University of Colorado School of Medicine. She received her B.A. from SUNY – Binghamton University and Ph.D. from SUNY – Stony Brook University. Her clinical and research interests are in assessment and treatment of psychiatric challenges in Autism Spectrum Disorder (ASD), and increasing access to evidence-based mental health services for individuals on the spectrum. Tammy has presented at various regional and national conferences, and authored many peer-reviewed publications on these topics.
 
Judy Reaven, Ph.D. is a Professor of Psychiatry and Pediatrics at the University of Colorado Anschutz Medical Campus. She received her B.A. from Vanderbilt University and Ph.D. from the University of Missouri – Columbia.  Clinical and research interests include identifying and treating psychiatric symptoms in Autism Spectrum Disorder, as well as the implementation of evidence-based treatments in community settings.  She is the primary developer of a cognitive behavior therapy (CBT) group intervention for anxiety in youth with ASD (Facing Your Fears- FYF).  She has been PI on many federal/foundation grants and has co-authored numerous peer-reviewed publications and book chapters.

Is THAT true? Judging Evidence by How Often its Repeated

Reposted with permission from Scott D. Miller, Ph.D. – Original post date: October 22nd, 2019

I’m sure you’ve heard it repeated many times:

The term, “evidence-based practice” refers to specific treatment approaches which have been tested in research and found to be effective;

CBT is the most effective form of psychotherapy for anxiety and depression;

Neuroscience has added valuable insights to the practice of psychotherapy in addition to establishing the neurological basis for many mental illnesses;

Training in trauma-informed treatments (EMDR, Exposure, CRT) improves effectiveness;

Adding mindfulness-based interventions to psychotherapy improves the outcome of psychotherapy;

Clinical supervision and personal therapy enhance clinicians’ ability to engage and help.

Only one problem: none of the foregoing statements are true.  Taking each in turn:

  • As I related in detail in a blogpost some six years ago, evidence-based practice has nothing to do with specific treatment approaches.  The phrase is better thought of as a verb, not a noun.  According to the American Psychological Association and Institute of Medicine, there are three components: (1) the best evidence; in combination with (2) individual clinical expertise; and consistent with (3) patient values and expectations.  Any presenter who says otherwise is selling something.
  • CBT is certainly the most tested treatment approach — the one employed most often in randomized controlled trials (aka, RCT’s).  That said, studies which compare the approach with other methods find all therapeutic methods work equally well across a wide range of diagnoses and presenting complaints.
  • When it comes to neuroscience, a picture is apparently worth more than 1,000’s of studies.  On the lecture circuit, mental illness is routinely linked to the volume, structure, and function of the hippocampus and amygdala.  And yet, a recent review compared such claims to 19th-century phrenology.  More to the point, no studies show that so-called, “neurologically-informed” treatment approaches improve outcome over and above traditional psychotherapy (Thanks to editor Paul Fidalgo for making this normally paywalled article available).
  • When I surveyed clinicians recently about the most popular subjects at continuing education workshops, trauma came in first place.  Despite widespread belief to the contrary, there is no evidence that learning a “trauma-informed” improves a clinician’s effectiveness.  More, consistent with the second bullet point about CBT, such approaches have not shown to produce better results than any other therapeutic method.
  • Next to trauma, the hottest topic on the lecture circuit is mindfulness.  What do the data say?  The latest meta-analysis found such interventions offer no advantage over other approaches.
  • The evidence clearly shows clinicians value supervision.  In large, longitudinal studies, it is consistently listed in the top three, most influential experiences for learning psychotherapy.   And yet, research fails to provide any evidence that supervision contributes to improved outcomes.d

Are you surprised?  If so, you are not alone.

Coke

The evidence notwithstanding, the important question is why these beliefs persist?

According to the research, a part of the answer is, repetition.  Hear something often enough and eventually you adjust your “truth bar” — what you accept as “accepted” or established, settled fact.  Of course, advertisers, propagandists and politicians have known this for generations — paying big bucks to have their message repeated over and over.

For a long while, researchers believed the “illusory truth effect,” as it has been termed, was limited to ambiguous statements; that is, items not easily checked or open to more than one interpretation.  A recent study, however, shows repetition increases acceptance/belief of false statements even when they are unambiguous and simple- to-verify.  Frightening to say the least.

EBP

A perfect example is the first item on the list above: evidence-based practice refers to specific treatment approaches which have been tested in research and found to be effective.  Type the term into Google, and one of the FIRST hits you’ll get makes clear the statement is false.  It, and other links, defines the term as “a way of approaching decision making about clinical issues.

Said another way, evidence-based practice is a mindset — a way of approaching our work that has nothing to do with adopting particular treatment protocols.

Still, belief persists.

fire hydrant

What can a reasonable person do to avoid falling prey to such falsehoods?

It’s difficult, to be sure.  More, as busy as we are, and as much information as we are subjected to on a daily basis, the usual suggestions (e.g., read carefully, verify all facts independently, seek out counter evidence) will leave all but those with massive amounts of free time on their hands feeling overwhelmed.

And therein lies the clue — at least in part — for dealing with the “illusory truth effect.”  Bottom line: if  you try to assess each bit of information you encounter on a one-by-one basis, your chances of successfully sorting fact from fiction are low.  Indeed, it will be like trying to quench your thirst by drinking from a fire hydrant.

To increase your chances of success, you must step back from the flood, asking instead, “what must I unquestioningly believe (or take for granted) in order to accept a particular assertion as true?”  Then, once identified, ask yourself whether those assumptions are true?

Try it.  Go back to the statements at the beginning of this post with this larger question in mind.

lie detector

(Hint: they all share a common philosophical and theoretical basis that, once identified, makes verification of the specific statements much easier)

If you guessed the “medical model” (or something close), you are on the right track.  All assume that helping relieve mental and emotional suffering is the same as fixing a broken arm or treating a bacterial infection — that is, to be successful a treatment containing the ingredients specifically remedial to the problem must be applied.

While mountains of research published over the last five decades document the effectiveness of the “talk therapies,” the same evidence conclusively shows “psychotherapy” does not work in the same way as medical treatments.  Unlike medicine, no specific technique in any particular therapeutic approach has ever proven essential for success.  None.  Any claim based on a similar assumptive base should, therefore, be considered suspect.

Voila!

I’ve been applying the same strategy in the work my team and I have done on using measures and feedback — first, to show that therapists needed to do more than ask for feedback if they wanted to improve their effectiveness; and second, to challenge traditional notions about why, when, and with whom, the process does and doesn’t work.   In these, and other instances, the result has been greater understanding and better outcomes.

So there you have it.  Until next time,

Scott

Scott D. Miller, Ph.D.
Director, International Center for Clinical Excellence

Scott D. Miller, Ph.D.
Scott D. Miller, Ph.D.

Scott D. Miller, Ph.D. is the founder of the International Center for Clinical Excellence an international consortium of clinicians, researchers, and educators dedicated to promoting excellence in behavioral health services. Dr. Miller conducts workshops and training in the United States and abroad, helping hundreds of agencies and organizations, both public and private, to achieve superior results. He is one of a handful of “invited faculty” whose work, thinking, and research is featured at the prestigious “Evolution of Psychotherapy Conference.” His humorous and engaging presentation style and command of the research literature consistently inspires practitioners, administrators, and policy makers to make effective changes in service delivery.
Scott is the author of numerous articles and books.
 
And, the forthcoming, Better Results: Using Deliberate to Improve your Therapeutic Effectiveness (with Mark Hubble and Daryl Chow [APA Press, May 2020]).
Click here to access his current and complete curriculum vitae.

Lets Remember, Not Repeat 2020 Reflections

With the New Year upon us, I wanted to reflect on twenty-twenty and share some updates with you, our reader. This year was a year of firsts:

– A global f***ing pandemic
– Virtual school, being your kid’s teacher
– Working from home and somehow being more productive than at work.
– Not being able to go into the store without a mask
– Masks (for many of us at least)
– Seaninderbitzen.com became a thing
– A vaccine became available

With all these firsts, while many of us are wishing twenty-twenty good riddance, my hope is that there were some good things that came out of it for you. For me and my own, we got to spend more time together, to see our children grow, get engaged, and started the Autism and Confidence program for health and human service professionals. Worth 5 Continuing Education Credits through the National Association of Social Workers Wisconsin Chapter, the program has been piloted with a Wisconsin mental health provider agency, and collected some preliminary data. The program will be available through University of Wisconsin-Eau Claire Continuing Education program in May of 2021. It will be offered virtually in the form of a 2 hour didactic and experiential learning experience, followed by 5 weeks of coaching sessions with one of our coaches. The coaching is designed to build practitioner confidence in working with people with autism and comorbid mental health problems. We discovered this past year that 100% of those who go through the full program are willing to treat people with Autism Spectrum Disorders. Thus, we were able to increase the Chippewa Valley’s mental health systems ability to treat people with Autism Spectrum Disorder.

While preliminary data was encouraging, we are looking at offering in places beyond Wisconsin in order to increase access to mental health services to people with autism. That stated, demand on the rise in for people who want to specialize in working with people with autism and comorbid psychiatric conditions. That stated, we are beginning to train new coaches to serve more professionals in our confidence building approach to working with autism and comorbid psychiatric conditions. With more coaches, new questions and new challenges will arise.

With the growth in demand for the autism spectrum disorder and comorbid psychiatric conditions specialty increasing, seaninderbitzen.com through the continuing education provider PESI, will offer: Motivational Interviewing for High Functioning Adults (HFA) with Autism and Comorbid Mental Health Conditions. This course is for the autism specific application of the intervention of motivational interviewing. It is intended to be geared towards professionals who have a working knowledge of Motivational Interviewing and want to work with their HFA adult clients to cultivate their own reasons for making the changes they want to achieve in their lives. The research we pull on this course really pulls much of what is at the heart of seaninderbitzen.com, which is research on being relational and person-centered in our approach to working with people who are traditionally have a hard time making relationships. This course focuses on tools that are based in motivationally interviewing but are geared to that HFA adult with depression or anxiety, who tends to get stuck on repeat. We work with tools to enter into the “stuckness” and move the needle forward in your treatment of anxiety and depression of HFA adults using things like confidence rulers, past success, and OARS to move the dial forward. It will be out in May of 2021, available through pesi.com for 6 Continuing Education Credits.

In addition to these clinical skill building courses, you can work directly with me on getting feedback on your Motivational Interviewing (MI) skills through our MITI 4.2.1 coding program. Clinicians who want to take their MI skills deeper now can, working one-on-one with Sean using the MITI coding system. The program requires clinicians to take a twenty minute audio sample of their MI skills, either with a fake or real client, about a real change they want to make. After completing this 20 minute audio recording clinicians submit it to Sean and get personalized feedback on their content. Using the MITI 4.2.1 coding system Sean will provide you with individualized recommendations on how to improve your motivational interviewing practice in written form, along with a 15-20 minute phone call to help you reflect on specific things you might do to take your Motivational Interviewing skills even deeper. If interested, this feedback can be tailored to an individual’s work with autistic patients or individuals who tend to ruminate.

In light of our upcoming clinical offerings additions to seaninderbitzen.com, we thought that it might be important to focus on the issue of race. Seaninderbitzen.com promotes the CATINA Method as our approach to assessing racial factors when it comes to the issues of race, mental health, and autism. The products affiliated with this approach can be found under the for “For Professionals” tab. We have a downloadable PDF paper version, a video explanation, and a podcast from Normal with Autism explaining what prompted the creation of the tool. If you are interested similar to our confidence booster series, we can work with you to address how the issue of race in autism is addressed in your assessment process.

Take a look. See what sticks out to you, and enjoy. We’ve got lots of new tools for you to try out and help you towards your continuing education needs in autism specific treatment for mental health disorders. Here’s to a new year of firsts!

Cheers from all of us at the seaninderbitzen.com family,
Sean Inderbitzen APSW, Member of MINT

Sean Inderbitzen
Sean is a Behavioral Health Therapist, and lives with an Autism Spectrum Disorder. He has a caseload with 25% of his patients that live with ASD and varying comorbid psychiatric conditions. Prior to being a mental health clinician, he was a Vocational Rehabilitation Specialist for Wisconsin Division of Vocational Rehabilitation for 3 years. He was also appointed by Governor Walker to the Statewide Independent Living Council of Wisconsin. He is an incoming member to the Motivational Interviewing Network of Trainers, and provides training on motivational interviewing, ASD and employment, and ASD and comorbid psychiatric conditions. If you are interested in a consultation or MI training, please click here

Podcasts by Sean

My Autism Tribe – Episode 66: Health Therapy for ASD
Normal with Autism – Episode 41: Unique, like everyone else

The Behavior Trap – Episode 22: Sean Inderbitzen, APSW – Wisconsin

Sean Inderbitzen
Sean Inderbitzen

Sean is a Behavioral Health Therapist, and lives with an Autism Spectrum Disorder. He has a caseload with 25% of his patients that live with ASD and varying comorbid psychiatric conditions. Prior to being a mental health clinician, he was a Vocational Rehabilitation Specialist for Wisconsin Division of Vocational Rehabilitation for 3 years. He was also appointed by Governor Walker to the Statewide Independent Living Council of Wisconsin. He is an incoming member to the Motivational Interviewing Network of Trainers, and provides training on motivational interviewing, ASD and employment, and ASD and comorbid psychiatric conditions. If you are interested in a consultation or MI training, please click here

Three Reasons to Connect With the Greater Autism Society of Greater Wisconsin

Are you looking for a place to help you find autism-related resources? Looking for quality education and training about autism and related topics? Are you looking for support from someone who has been down a similar path? The Autism Society of Greater Wisconsin and our local network of affiliates might be what you’re looking for.

The main purpose of the Autism Society of Greater Wisconsin is to offer a community for those who are committed to increasing the quality of life for people with autism and their families. Our local network in Greater Wisconsin makes us unique and allows us to provide direct support in local communities while staying connected at a state and national level. Our mission and vision are specific enough to give us focus while being broad enough to give us flexibility to shift our programs to meet growing needs. Our network is powered by a broad base of volunteers with varying experiences and expertise. 

Here are three reasons to connect with the Autism Society of Greater Wisconsin:

  1. We Offer Community: a Welcoming Place of Belonging and Acceptance

All of us look for a place where we feel welcomed, understood, and accepted; a place where we belong. Being part of a community that accepts and celebrates you, as you are, can play a big role in your mental health and overall well-being. The Autism Society of Greater Wisconsin is made up of a group of people that understand the wide range of experiences of people with autism and their families, and offers a place of nonjudgmental connection, and support. Across our affiliate network, we have groups for autistic teens & adults, groups for parents, and events for families. In 2020, almost all these groups have shifted to a virtual setting which makes them even more accessible! If you or someone you’re working with could benefit from connecting with others, please check out our groups and events! 

  1. We Offer Quality Autism-Related Education and Training

The Autism Society of Greater Wisconsin’s educational programming reaches over 1,500 people annually. We’re proud of the quality, cutting-edge information, and the nationally recognized speakers featured at our conferences and workshops each year. From our 3-day annual conference in the spring, to Autism 101 workshops, to trainings for community organizations and first responders, we are committed to raising awareness of autism, and most importantly, increasing acceptance & understanding. Our educational programming aims to provide timely information and strategies for supporting children and adults with autism. We also aim to shape the way people think about autism and disability, moving from a deficit model to the more strengths-based social model that focuses on changing the systems of support, rather than changing the person. 

  1. There’s a Place for Everyone

If you have a social work background, you are probably familiar with the systems theory or approach. As a very basic explanation, the systems approach acknowledges that people are part of many different systems that all influence their well-being, behavior, and experiences. Changes in just one part of the system, can affect how the whole system functions. Which means to impact one person’s life, we need to look at the systems around them. The services and supports available to a person will have a huge impact on a person’s quality of life, in addition to their family structure, the quality of the small interactions throughout their day, etc. We take a similar approach at the Autism Society of Greater Wisconsin. We know that to increase access to a quality of life for those with autism, we need to improve the systems that people with autism interact with. This is why we have programs for autistic children and adults, their families, schools, employers, communities, etc. The better our schools are supporting those with autism, the better life will be for students with autism at school and beyond. The more employers know, the more they can accommodate and support a neurodiverse workforce to be successful. The more the public understands people with autism and the importance of neurodiversity, the less stigma and discrimination people with autism and their families will face, and so on. With so many systems to affect, we need all perspectives and representation from a diverse range of backgrounds! 

There are other reasons to connect and many specific program offerings that I didn’t mention here. So please, take some time to browse our website and reach out with any questions. I’m always excited to talk about the Autism Society, our vision, and how we’re making an impact on the quality of life for people with autism and their families. Here are 5 ways to connect and get involved:

  1. Like us or follow us on Facebook, Instagram, and Twitter
  2. Connect with others in the Autism Society community by joining a virtual group or our Facebook group.
  3. Volunteer! Do you have experience or expertise to share? We’d love to hear from you. We’re always looking for blog writers, speakers, or group facilitators. 
  4. Do you want to support our mission and vision but don’t have time to spare? Donate to support our programs and services! As a nonprofit organization, we rely on the generosity of our community to fund our services. Every donation has a huge impact! 

Interested in learning more? Visit our website or contact our Executive Director, Kirsten Cooper.

Kirsten Cooper, MSW, Executive Director, Autism Society of Greater Wisconsin

Kirsten has led the Autism Society of Greater Wisconsin as the Executive Director since 2011. Prior to her position at the ASGW, she worked with the Regional Centers for Children and Youth with Special Health Care Needs on a statewide grant designed to strengthen the state’s infrastructure to improve services for children with ASD and other developmental disabilities. Kirsten received her bachelor of science degree in communicative disorders from UW – Madison and her MSW from UW- Oshkosh. She has worked with individuals and families affected by autism through direct services and systems change work for more than 15 years.

An Introduction to our Autism and Culture Course: a Podcast

Catina Burkett
Catina Burkett

Black women are not usually considered for autistic traits, but they do exist. This is true for Catina Burkett. Catina is a native of the Bronx, New York. She graduated from Columbia College in 2006, she completed her master of social work at the University of South Carolina in 2010. Catina has a vast array of experience since the start of her career in 2006, which includes independent practice. She is a licensed mental health professional, who advocates for black women on the autism spectrum, offering a unique perspective because of her autism. She is using her platform to create a guide to educate mental health providers on Autism and Cultural Competence in Mental Health.

Additional Resources for the CATINA Method

A Printable, PDF Version

A Video Explanation

Catina Burkett
Catina Burkett

Black women are not usually considered for autistic traits, but they do exist. This is true for Catina Burkett. Catina is a native of the Bronx, New York. She graduated from Columbia College in 2006, she completed her master of social work at the University of South Carolina in 2010. Catina has a vast array of experience since the start of her career in 2006, which includes independent practice. She is a licensed mental health professional, who advocates for black women on the autism spectrum, offering a unique perspective because of her autism. She is using her platform to create a guide to educate mental health providers on Autism and Cultural Competence in Mental Health

The CATINA Method

Culture check

Ask questions

Test your EQ

Investigate

Nine-point check

Ally: Be an ally

Culture Check

Check with your client for the importance of race and gender. This type of question can be revisited after several sessions. Do not under estimate how your black client has been conditioned to minimize themselves in the presence of white people. 

It is important to understand how society views the black community. As a mental health professional, you must use the person-in-environment (PIE) theory to adequately address and understand their culture. Have consideration for how the news and media portrays black people and enforces stereotypes.

Use Person Centered Therapy as the method of engagement. A Black person on the spectrum is most likely to be different from their cultural upbringing. This person will have a deeper sense of not belonging. The need to be seen, heard, and validated is pivotal.

For clients over the age of 18, open ended questions may provoke the subconscious need to mask and give a rehearsed response. It is likely to create anxiety. Probing questions are more structured and allows the individuals process of thought and opinion to be authentic.

Be mindful of the impact that Black people are not equally protected by local law enforcement. This has been an ongoing issue for numerous years. When Black people and white people hear police sirens, there are two distinctly different psychological experiences. One of safety and security. The other fear and worry. According to columbiapsychiatry.org “The Black community suffers from an increased rate of mental health concerns, including anxiety and depression. The increased incidence of psychological difficulties in the Black community is related to the lack of access to appropriate and culturally responsive mental health care, prejudice and racism inherent in the daily environment of Black individuals, and historical trauma enacted on the Black community by the medical field. Moreover, given that the Black community exists at the intersection of racism, classism, and health inequity, their mental health needs are often exacerbated and mostly unfulfilled. Issues related to economic insecurity, and the associated experiences, such as violence and criminal injustice, further serve to compound the mental health disparities in the Black population.” This is your opportunity to ensure a safe space for healing with full acknowledgment of systemic racism presence in society. 

Ask

No one has all the answers. Not even the CDC. According to cdc.gov “Black and Hispanic children continued to be less likely to be identified with ASD than white children. These differences suggest that black and Hispanic children may face socioeconomic or other barriers that lead to a lack of or delayed access to evaluation, diagnosis, and services.” The discrepancies I have with this report is that the CDC makes the assumption and suggest that autistic black and Hispanic children are disadvantaged by socioeconomic barriers that lead to a lack of or delayed access to evaluation, diagnosis, and services.”  The truth is that the medical and educational professionals do not assess and evaluate black and Hispanic children equally. As a black woman I have spent most of my life stereotyped as single, single parent, poor, uneducated, and unmarried. This narrative has improved.  In recent years it is noted that Black women receive degrees at a higher rate, are among the most educated, vote at higher rates than the rest of the population and starting more businesses than any other groups of women. Despite the hard work and tenacity of black women, the CDC’s August 27, 2019 report continues to push the narrative undiagnosed minority children face socioeconomic or other barriers instead of the blatant fact that they are overlooked and not included.

Keep in mind that it is not the responsibility of black people to educate white people on how to correct problems created by white people.  When seeking knowledge based on culture, you must be willing to ask yourself difficult questions. According to psychology today, white therapists should ask themselves:

“Do you feel competent to ask about, respond to, and support clients regarding their experiences of racism, oppression, and intersectionality?

Are you willing to address racial differences with clients early in therapy?

Can you talk about white privilege and what it means to be white?

If you identify as white, identify several areas of privilege you did not realize were a privilege of being white until you learned about white privilege.”  

Do you spend time with around the population you serve outside of work hours?

Reading books, watching documentaries and cultural diversity training is the bare minimum. Therapists should have experience working under a supervisor who can skillfully help navigate issues surrounding culture, race, and stigma with their clients. Autism Spectrum Disorder does not discriminate, and neither should the mental health industry and the professionals who deliver care.

Test Your EQ

Emotional intelligence (emotional quotient or EQ) is the ability to understand, use, and manage your own emotions in positive ways to relieve stress, communicate effectively, empathize with others, and overcome challenges. Have an honest understanding of your strengths and limitations before seeing a client of color. White fragility and microaggressions are detrimental to the therapeutic process. According to Zencare.com, the work of awakening to our privileges and biases, understanding systems of oppression, and creating a safe and understanding space for clients is hard, daily, and ongoing work. It can bring up guilt, shame, and defensiveness. Practice self-compassion and patience, lean into the tension, and as Dr. Chandy put it, “move through it towards connection and engagement” with clients.  When dealing with emotionally sensitive issues such as race, it is important to be your best self. Addressing the issues of Black people and Autism will require a level of self-care and genuine empathy that may not come easily. If your emotional intelligence is in check, you will be prepared to face the tough issues with all parties feeling seen, heard and validated.

Ask yourself a few simple questions:

Do I have frequent disagreements?

Do I know the difference between assertive and aggressive?

Do I feel that others are too sensitive?

Am I too sensitive?

Do I have difficulty understanding others points of view?

Do I avoid difficult conversations?

Am I a people pleaser?

According to psychologytoday.com, “an emotionally intelligent individual is both highly conscious of his or her own emotional states, even negativity—frustration, sadness, or something more subtle—and able to identify and manage them. Such people are especially tuned in to the emotions that others experience. It’s understandable that a sensitivity to emotional signals both from within oneself and from one’s social environment could make one a better friend, parent, leader, or romantic partner. Fortunately, these skills can be honed.”

Investigate

Investigate the latest journals, peer reviewed articles and government websites about Black people on the autism spectrum. Question the equality in research. Understand that until there are research studies and organizations that focus on people of color on the autism spectrum, there will always be a lack of representation, medical assistance and services.

An effort to identify minorities on the spectrum will require, addressing the relationships with families. Trust, education and follow through is key.  Counseling 101: Establishing trust and rapport is an essential part of a healthy therapist-client relationship. If the client and the community feels embraced, safe and respected, there can be relationships formed. Next, you must educate the family/ community about autism. Talk to Black people who are adults on the spectrum and let them educate you on their experiences growing up. This can give valuable insight to identifying black children. As an ice breaker use the nine-point checklist to get the conversation started, before using medical terminology in a manner that can be off putting. This has nothing to do with socioeconomic status or intelligence. The basis of Autism symptoms are that of white males and the culture which surrounds him. For instance, eye contact has different meanings for different cultures. Indirect eye contact is a sign of respect and humility in some cultures. That same behavior may be judged as lying, deceitful, untrustworthy or dangerous to a white person in a position of authority or a white person who feels s/he is the authority just because they are white. Simply put: culture matters and you must do your due diligence to get the best result.  Follow through is the game changer. After establishing rapport and making the connection you must commit to the relationship. Following through with being the change that is needed to help to connect with services like our white fellow Autistics, would mean so much.  Autistic people of color need allies. Allies who are determined to see change and be a part of it.

Nine Point Check

It’s important that you understand the culture and language of the parents so you can address the child/ individual appropriately. Below, is a list of common descriptions made by black caregivers describing their child’s behavior. Your active listening skills can make all the difference for a black person to get early treatment and services.

  1. Caregivers complain about the individuals refusal to speak. Delayed speech. Pointing to desired objects, non-verbal. Episodes of unexplained frustration due to communication difficulties.
  2. Individuals are judged to be rude and dismissive.  Described as “unfriendly” or “mean” because s/he doesn’t smile and usually has a flat, serious expression. Does not change demeanor for authority figures.
  3. Parent describes the child as quiet and well behaved. The individual is overly compliant: goes along to get along with minimal pushback. 
  4. Individuals are “different” from their siblings. Very sensitive to their environment, whereas siblings and other peers are able to adjust. i.e. lights, sounds, city living. 
  5. Lack eye contact and/or engage in empty stares. Lack responsiveness to command for interpersonal engagement. i.e. “Come here, look at me when I’m talking to you and do as I say.”  
  6. Child/ individual enjoys solitary activities and interests.  Does not want others touching their things. 
  7. Described as simple and naive. Person appears to allow others to use and take advantage of him/her. 
  8. Avoids arguments and altercation. The individual is not ‘tough’.  Likely bullied by family member(s) and peers. 
  9. Does not strictly identify with black culture. Sees self as an individual first and black person second. Has their own sense of style. Dress for comfort. Not to impress.

Alliance

Integrate Black therapists in practices where most professional staff are white. Consult with Black clinicians. Pay them their worth. Be transparent and open to permanent change. Take a stance. Use your privilege and your power to bring attention to the lack of research and intervention for people of color on the spectrum. In the United States and other countries around the world, people of color rank low in Maslow’s Hierarchy of needs. Systemic racism suppresses people of color and the need for control and order in their lives. People of color lack basic security and safety needs such as the policing in our communities. Being an ally can help to bring change in areas that people of color cannot reach.

For a printable version of this blog post, click here

For a video explanation, click here

  1. Katschnig H. (2006). Quality of life in mental disorders: challenges for research and clinical practice. World psychiatry : official journal of the World Psychiatric Association (WPA), 5(3), 139–145. 
  2. Emotional Intelligence   https://www.psychologytoday.com/us/basics/emotional-intelligence
  3. Addressing Mental Health in the Black Community NewsFebruary 8, 2019. By Thomas A. Vance, Ph.d  https://www.columbiapsychiatry.org/news/addressing-mental-health-black-community# 
  4. Mental Health in the Black Community |www.columbiapsychiatry.org
  5. https://blog.zencare.co/how-white-therapists-address-racism-black-clients/
  6. https://www.psychologytoday.com/us/blog/culturally-speaking/201905/is-your-therapist-qualified-treat-people-color
  7. https://www.cdc.gov/ncbddd/autism/addm-community-report/differences-in-children.html
Catina Burkett
Catina Burkett

Black women are not usually considered for autistic traits, but they do exist. This is true for Catina Burkett. Catina is a native of the Bronx, New York. She graduated from Columbia College in 2006, she completed her master of social work at the University of South Carolina in 2010. Catina has a vast array of experience since the start of her career in 2006, which includes independent practice. She is a licensed mental health professional, who advocates for black women on the autism spectrum, offering a unique perspective because of her autism. She is using her platform to create a guide to educate mental health providers on Autism and Cultural Competence in Mental Health.