Living with Autism and Mental Illness; A Struggle Many Endure Silently

Author: Dr. Tara Loughrey Cohen, Director of Education, The Victory Center

Autism is a pervasive developmental disorder, also known as a spectrum disorder with varying degrees of severities. While progress has been made in identifying autism earlier in development and increasing community awareness, we may often associate certain difficulties experienced by those on the spectrum to be a direct reflection of autism rather than an underlying mental illness. Parents, professionals and the community may tend to attribute manifestations of behavioral and emotional outbursts as part of autism rather than mental illness.

Problematic behavior such as the inability to sit still, prolonged crying, as well as sudden changes in behavior such as eating, and sleep patterns may be misattributed to be a result of the autism diagnosis. Given increased prevalence of autism which is now at 1 in 59 (CDC, 2014), more emphasis should be placed on understanding the lifelong challenges as it relates to mental illness. The increasing body of research is clear, having autism puts an individual at greater risk of mental illness. Recent research by Simonoff et al. (2008) found that approximately 70% of persons with autism met criteria for a comorbid mental illness listed in Diagnostics Statistical Manual 4th Edition.

Characteristics associated with autism, such as difficulties relating to social norms and difficulties communicating, may increase the likelihood of experiencing loneliness and symptoms of depression. Sensory sensitivities such as difficulties tolerating lights, sounds, and other external stimuli in an increasingly fast paced society may also put someone at greater risk for anxiety. The topic of autism and mental illness certainly deserves greater attention so that we may become more versed in the complexities surrounding living with autism.

Research should focus on developing more sensitive tools to identify psychiatric disorders accurately in individuals with autism. One unfortunate reality is that diagnostic tools developed to detect comorbidity of psychiatric disorders with autism are limited. In addition, current diagnostic tools have not been adequately tested for validity and reliability for those on the autism spectrum. Further, overlapping clinical symptoms and a heavy reliance on the individual communicating their symptoms to clinicians makes diagnosing mental illness evermore challenging. When a child is not responding to function-based behavioral interventions that are intensive and implemented with a high degree of treatment fidelity, it is up to parents and behavior analysts to advocate that something else may be going on. When certain problematic behavior is finally recognized as manifestations of a comorbid mental illness, more specific and comprehensive treatment is possible which ultimately promotes better clinical outcomes.

Leyfer et al. (2006) performed a series of diagnostic tests to identify prevalence of comorbidities of psychiatric disorders in a sample of 109 children diagnosed with autism. In their published research, specific phobias appeared most commonly with autism at a prevalence rate of 44% with fears of crowds and needles reported most often. The second most common diagnosis was Obsessive-Compulsive Disorder at prevalence rate of 37%. Common examples of these manifestations in autism included parents and caregivers having to perform daily routines in a specific way. Other manifestations included extensive question asking rituals and/or preoccupation with repeating certain verbal statements. The third most common comorbid diagnosis detected was Attention Deficit Hyperactivity Disorder at a prevalence rate of 31% followed by depression.

The onset of mental illness often occurs in adolescence, a time of rapid developmental changes associated with puberty and increased social pressures. These co-occurring factors may lead some parents to believe that changes in their teen’s behavior are a part of growing up with autism rather than mental illness. Abrupt and lasting change in behavioral patterns without substantial environmental changes should serve as a warning. Further, familial history with mental illness should make parents more vigilant to likelihood of comorbidities.

Although differential diagnosing is difficult, it is critical to promote access to appropriate treatment which may include the addition of Cognitive-Behavioral Therapy (CBT) and when necessary, medication. Many of these therapies can be successfully incorporated and scientifically evaluated with an applied behavior analytic approach. However, without appropriate comprehensive treatment, mental health issues can worsen leading to injury of the individual and those around them. Caregivers, therapists, and parents are on the front lines of detection. Should one suspect a mental health issue, it is imperative to seek the advice of an expert to develop a comprehensive treatment specific to the needs of the individual. The remaining work lies in prevention and promoting overall better mental health. With October 10th designated World Mental Health Day, I challenge our community to be more sensitive to the neuro-diversity of individuals and to be more inclusive of those with differences. Whether it is inviting the child with autism to a birthday party, creating more sensory-friendly environments, or just simply showing greater compassion to the individual who is struggling to navigate through a daily routine, each of us can be part of a meaningful solution.

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