Mental health treatment is an integral, yet often overlooked, component in the constellation of supports that surround individuals diagnosed with Autism Spectrum Disorder (ASD). Common mental health supports include case management, therapeutic groups to increase social-emotional learning, and behavioral-based intervention strategies. While these are important staples of treatment, there is a deeper need for access to individualized mental health treatment modalities. For children and adolescents with intellectual and developmental disabilities (I/DD), mental health conditions are “up to five times more prevalent than in the general population, and these problems get worse with age and the severity of the neurodevelopmental condition” (Bertelli, Forte, Bianco, 2023). Moreover, research shows that individuals with I/DD and ASD are at a higher risk for mental health issues and ongoing adverse experiences. These may include but are not limited to, physical, emotional, and sexual abuse and neglect, multiple hospitalizations, school and placement failures, and self-injurious behavior. This indicates an increased need for mental health support and access to the same types of services as their peers without ASD and I/DD.
Components of Mental Health Treatment for Individuals with Autism
Trauma-Informed Care – In 1984, the National Association for the Dually Diagnosed (NADD) was established. This organization helped to overturn the long-standing failure of systems to recognize the prevalence of mental health issues, advance therapeutic treatments, and invest in research to benefit and improve the overall health of this population. Advances in understanding Post Traumatic Stress Disorder (PTSD), trauma, and adverse childhood experiences (ACEs) created a better understanding of the full range of experiences that negatively impact the mental health and quality of life of individuals with ASD and I/DD. Furthermore, in 2003, The National Child Traumatic Stress Network (NCTSN) expanded the criterion for adverse events and offered seven distinct domains that are negatively impacted by complex developmental trauma: attachment, biology, affect regulation, dissociation, behavior regulation, cognition, and self-concept (Cook, Blaustein, Spinazzola, van der Kolk).
Similarly, advances in trauma-informed therapy have identified core components of phase-oriented care. These include establishing safety, stabilization, affect regulation, skill building, addressing cognitive distortions, exposure to or integration of the trauma narrative, and the augmentation of resiliency factors. An additional key to providing support and trauma-informed care to individuals with I/DD and ASD, particularly in residential and day programs, is through the implementation of psychoeducation and trauma-informed consultation. This type of consultation, delivered to staff, caregivers, and family members, helps address the safety component in the environment and the attachment caregiving systems.
Trauma-Informed Consultation – The systems through which individuals with ASD and I/DD receive care have historically trended toward behavioral-based perspectives and approaches, which are not set up to explore the underlying, complex mental health experiences of the individuals served. Integrating mental health services into these systems through consultation is imperative as it creates a more holistic approach to treatment.
Being a caregiver to individuals with ASD or I/DD is as challenging as it is rewarding. This system often includes parents, extended family members, special education teachers, occupational therapists, speech therapists, behavior clinicians, and day program or residential direct support providers. One overarching goal of trauma-informed care includes creating safety and developing positive capacities within the caregiving system. This includes supporting caregivers by providing psychoeducation to increase knowledge and skills around their ability to self-regulate, provide predictability, and create positive, safe relationships. Trauma-informed care further helps with both vicarious trauma of caregivers and prevents burnout while maintaining quality care (Blaustein, Kinniburgh, 2019).
Individual Therapy – Individual therapy, which takes place within a trusted relationship and in a safe environment, allows individuals to learn about themselves and the world around them. It is confidential and can be a unique contrast to the day-to-day experiences of individuals with ASD. The therapeutic relationship is based on unconditional positive regard, allowing the individual to gain agency over their treatment. It also has the potential to create reparative experiences that will ultimately foster resiliency and set the stage for future skill-building and growth. It is a place where almost all play, self-expression, and exploration are allowed and honored — a stark contrast to systems and environments that are highly controlled and monitored. In therapy, meaning can be made, joy can be discovered, and experiences can be externalized, examined, and recontextualized.
Given the cognitive impairments of individuals with ASD and I/DD, an attuned therapist needs to document and understand any changes in presentation and expressions of distress as indicators of mental health or trauma responses. Trauma-informed therapists are uniquely positioned to offer a framework for healing in the context of the therapy space. Through techniques that draw from various approaches, therapists can offer the space and time for reparative expression and exploration that is not allowed during day-to-day events. Some examples of effective treatment modalities for individuals with ASD and I/DD are psychoeducation and group therapy, play therapy, and expressive arts therapy.
Psychoeducation – Psychoeducation on self-regulation strategies greatly relieves (dis)stress and sets the stage for more individualized counseling. This may be modeled through co-regulation or explained with visuals and words.
Group Therapy – Over the past 30 years, Interactive Behavior Therapy (IBT), a model of group therapy grounded in the theoretical underpinnings of psychodrama, has shown efficacy in treating individuals with I/DD and/or protracted mental health issues and trauma. In one study, IBT group participants with I/DD experienced an equal or greater impact of therapeutic factors leading to positive change compared to neurotypical participants. Working to enhance social competence, acceptance, universality, and installation of hope, IBT aligns well with trauma-informed treatment frameworks (Razza, Tomasulo, 2005).
Play Therapy – Play therapy is a therapeutic modality where a trained mental health professional “uses the therapeutic powers of play to help clients prevent or resolve psychosocial difficulties and achieve optimal growth and development” (Association for Play Therapy, 2024). Play, often described as the language of children, can be especially beneficial when working with individuals with ASD and I/DD. Trauma-informed play therapy focuses on safety making, augmenting positive coping skills, facilitating emotional and behavioral regulation, and making meaning of the post-trauma self (Goodyear-Brown, 2010).
Expressive Arts Therapy – Expressive arts therapy refers to “the purposeful application of art, music, dance/movement, dramatic enactment, creative writing, and imaginative play [and] is largely a non-verbal way of self-expression of feelings and perceptions” (Malchiodi, 2020). These techniques are implemented by a mental health professional who has been trained in the use of expressive arts therapy. For individuals who are not primarily verbal communicators or who have trouble articulating their experiences, these modalities allow therapeutic work to move beyond the need for words. This approach is especially beneficial when working with individuals who have experienced trauma, as the expressive arts “are action-oriented and tap implicit, embodied experiences of trauma that can defy expression through verbal therapy or logic” (Malchiodi, 2020).
Closing
Individuals with ASD and I/DD are at risk for and present with higher rates of mental health concerns, including traumatic and adverse childhood experiences. While treatment continues to improve, mental health counseling is underutilized and underrepresented in trauma-informed approaches to care. The use of phase-oriented, trauma-informed treatment can help guide individual therapy and provide both reparative experiences and protective factors that contribute to the resiliency and quality of life for a group of individuals underserved by the health system at large.
Michelle McGonagle, LICSW, is the Senior Clinical Advisor of Mental Health Services at The Guild for Human Services. She can be reached at mmcgonagle@guildhumanservices.org.
Cailey Bussiere, MA, is a Mental Health Counselor and Expressive Arts Therapist at The Guild for Human Services. She can be reached at cbussiere@guildhumanservices.org.
References
Association for play therapy. (n.d.-a). https://www.a4pt.org/
Autism spectrum Disorder. (n.d.). National Institute of Mental Health (NIMH). https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd
Autism. NAMI: National Alliance on Mental Illness. (n.d.). https://www.nami.org/About-Mental-Illness/Common-with-Mental-Illness/Autism/Treatment
Blaustein, M. E., & Kinniburgh, K.M. (2019). Treating Traumatic Stress in Children and Adolescents: How to Foster Resilience through Attachment, Self-Regulation and Competency. Second Edition. New York, NY: Guilford Press.
Cook, A., Blaustein, M., Spinazzola, J., & van der Kolk, B. (Eds.). (2003). Complex Trauma in Children and Adolescents, White Paper from the National Child Traumatic Stress Network Complex Trauma Task Force. www.NCTSNet.org.
Goodyear-Brown, P. (2010). Play Therapy with Traumatized Children: A Prescriptive Approach. Hoboken, NJ: John Wiley &Sons, Inc.
Green-Wald, R. (2009). Treating Problem Behaviors: A Trauma-Informed Approach. New York, NY: Rutledge, Taylor & Francis Group.
Malchiodi, C. A. (2020). Trauma and Expressive Arts Therapy: Brain, Body, and Imagination in the Healing Process. Guilford Publications
Razza, N.J., & Tomasulo, D.J. (2005). Healing Trauma: The Power of Group Treatment for People with Intellectual Disabilities. Washington, DC: American Psychological Association.
