Co-occurring mental health conditions are the rule rather than the exception in autism spectrum disorder (ASD). A full 70% of individuals with ASD have one co-occurring condition; 40% have two or more (Siminoff et al, 2008). Living with autism is a journey, and in talking to families, I often rely on a travel metaphor in describing ASD as “carrying suitcases.” This word picture helps families understand that ASD is the central condition, in dynamic interplay with others, and sets the stage for an integrated, multi-pronged approach to treatment.
Elizabeth Roberts, PsyD
Estimating the prevalence of the most common, co-occurring conditions in adults with mild ASD is complicated by the heterogeneity of both ASD the condition and ASD research methodology. The majority of ASD research has historically focused on children, males, and more severely affected individuals such that subgroups of adults, females, and individuals with milder forms of ASD are still much less understood. With that caveat in mind, research (Cassidy et al., 2014, Croen et al., 2015, Hofvander et al., 2009, Leitner, 2014, Leyfer et al., 2006, Muris et al., 1998, Simonoff et al., 2008; van Steensel et al., 2011) has identified the following prevalence rates for the most commonly occurring disorders:
- Anxiety Disorders including OCD, 40-80%
- Attention Deficit Hyperactivity Disorder (ADHD), 37-85%
- Depression, 26%
- Mood disorder, 52%
- Suicidality, 66%
Other conditions or problematic behaviors that co-occur less frequently (Cacola, Miller, & Williamson, 2017, Croen et al., 2015, De Vries et al., 2010, Haruvi-Lamdan et al., 2017, Hofvender et al., 2009, MacMullin et al., 2016) but require consideration when treating adults with mild ASD include:
- Psychosis
- Schizophrenia
- Gender dysphoria
- Trauma
- Excessive electronic gaming
- Substance use disorder (SUD)
- Learning disabilities
- Developmental Coordination Disorder (DCD)
Each of these conditions represent important and complicated topics with emerging bodies of research. A particularly important and neglected area of study is the relationship between trauma and ASD, as individuals with ASD are vulnerable to experiencing higher rates of social rejection, bullying, abuse, and conflict across development. Excessive gaming is not recognized as a disorder in the DSM 5 but will be in the next edition of the ICD. A new review of what is known about ASD and SUD indicates that these conditions co-occur more often than has been believed (Palmer & Kunreuther, 2018). Like other individuals with anxiety, individuals with ASD may be particularly at risk for cannabis dependence (Hill et al., 2017). Individuals with ASD suffer from a range of learning disabilities but limitations in reading comprehension and compositional writing are the most common; the majority of students with ASD suffer with poor handwriting related to DCD.
Medical and neurologic conditions that co-occur with ASD (Canitano & Vivanti, 2007, Cohen et al., 2014, Croen et al., 2015, Fombonne, 2003) include:
- Tic disorders
- Seizure disorder
- Sleep, eating, and elimination disorders
- Obesity
Thus, careful diagnostic assessment is crucially important at the initial stage of integrated treatment. This leads to a sophisticated case formulation that accounts for the inter-related nature of ASD, co-occurring conditions, and behavior embedded in the biopsychosocial context.
Case Example
P.R. was a 21-year old young woman with average intellectual ability and language, enrolled in a young adult transition program. Previously diagnosed with ASD, ADHD, learning disabilities, and dysgraphia she had been treated with stimulant medication in the past. Over the previous six months, she had been re-started on a new stimulant to treat ADHD. She was not doing well. An already limited food repertoire had become further restricted, resulting in alarming weight loss. She was gaming several hours a day and her sleep-wake cycle was compromised. She had recently failed the one college course in which she had enrolled. Her social isolation had increased. Self-care and hygiene were poor. At a family meeting, she bore a hollow-eyed, haunted look. A staff clinician offered his interpretation that her behavior represented a wish to die. He affirmed that the team cared deeply for her. This decisive communication prompted her to disclose a daily, grinding experience of profound dread and hopelessness. Her mother began to weep and disclosed her own history of intractable depression. The team was then able to generate a set of interventions around now more clearly identified challenges. These included closer collaboration with the treating psychiatrist around the management of ADHD and depression and avoidance of appetite suppression, regular family sessions, psychoeducation concerning the interplay of ASD, depression, ADHD, sleep, nutrition, and excessive gaming, increased staffing to support nutrition, ADLs, and academics, and a behavior management program to support alterations in her relationship to gaming.
Lumping, Untangling, and Other Quandaries
The DSM 5 makes it easier to avoid the pitfall of lumping symptoms under the ASD umbrella. While this may result in what may feel like a staggering laundry list of “problems” families ultimately feel relieved at this “divide and conquer” approach. At the same time the strands that have been untangled then need to be re-woven. Over-zealous untangling can also lead to getting lost in the desire in therapist or client to find an exact one-to-one correspondence between a given behavior and a particular condition and so it is important for the process to remain focused on behavior change. Finally, it is crucial to appreciate the impact of the ASD symptomatology itself (including social and communication limitations) on the client’s experience of daily life, his insight and self-awareness, and capacity to receive help. The skilled clinician understands this and develops a comprehensive solution-based integrated treatment plan.
Integrated Treatment
Individual Therapy – Successful integrated treatment for ASD reinforces a client’s process of self-acceptance, self-determination, and self-advocacy. Intervention needs to be client-centered, engage the client’s sense of humor, and characterized by patience and careful management of the potential for misunderstanding due to cognitive inflexibility and limitations in social communication and theory of mind. Initial steps involve establishing a working relationship around client-identified goals. The next phase of treatment involves careful but non-intrusive diagnosis of co-occurring conditions and patient, appropriate psychoeducation. Clients are supported to positively frame their diagnoses as a means of understanding and accepting one’s whole self and a vehicle for getting help and joining communities.
Cognitive-behavior therapy (CBT) is the cornerstone of integrated treatment in mild ASD. Expertly described by Valerie Gaus (2007) and others, CBT is an established, evidence-based practice for the treatment of two of the most common co-occurring disorders in ASD—anxiety and depression. ADHD is best treated with well-researched CBT-based approaches developed for adults with ADHD (Ramsay & Rostain, 2015, Solanto, 2013), with modifications to manage ASD-related limitations in cognitive flexibility and pragmatic language. Integrated harm reduction therapy (IHRT), a treatment for substance use disorders (SUDs) that emerged in the 90s (Marlatt & Tapert, 1998), uses a CBT framework but draws on motivational interviewing (MI) and psychodynamic principles to support behavior change. While there is currently no research concerning IHRT for individuals with ASD and SUD, this may prove to be a promising approach in individual therapy.
Family Involvement – When treating adults with ASD clinicians may rely on standard clinical judgment around confidentiality and defer contacting family. However, adults with mild ASD are often dependent on others in many ways and tend to require a different approach. Presenting problems revolving around dysregulation (tantrums), lack of initiative, perseveration, or other behaviors occurring within a system are best supported with family involvement. While remaining fully client-centered and organized around the client’s goals, family sessions and psychoeducation are often essential to supporting behavior change.
Collateral Therapies – Individuals with mild ASD usually require additional therapies. In addition to interventions that support social learning such as group social skills training, clients may benefit from:
- Vocational coaching
- Occupational or physical therapy
- Speech & language therapy
- Behavioral coaching in natural environments
- Neurodiverse couples therapy
- Sex education
Psychopharmacology – The majority of clients with mild ASD benefit from referral to a psychiatrist to assist with diagnosis and treatment options for co-occurring conditions. Because many have been misdiagnosed or received inadequate psychoeducation, adults with ASD and often their family members are often unaware that medication sometimes helps. Past history of failed or iatrogenic medication treatment or experienced trauma in schools or healthcare settings are additional factors in this wariness. These need to be considered when making and managing referrals to treating physicians.
It Takes a Village
When young adults or adults with mild autism enter integrated treatment, clinicians are advised to commit extra lead time to carefully evaluate for co-occurring disorders. This builds confidence and trust in the therapeutic relationship and generates a sophisticated case formulation and treatment plan. Often this involves collaborating with family members and other professionals in interesting and creative ways.
Elizabeth Roberts, PsyD is National Director of Clinical Support Services for College Internship Program (CIP), a comprehensive transition program for young adults 18-26. For more information, visit www.cipworldwide.org.
References
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