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Mental Health Matters to Autism

By Merrick Egber

May is Mental Health Awareness Month. From individual to group sessions, the Els for Autism Foundation® offers a suite of mental health services.

Start by asking yourself, “Am I feeling fine?” If the answer is ‘no,’ and you are affiliated with the autism community, then resources are available to you. As a follow-up to one of our latest news articles regarding the collaboration of Els for Autism and the National Alliance of Mental Illness (NAMI) to support individuals with autism and psychiatric diagnoses, we reached out to Cheryl Checkers, M.S., LMHC, the President of NAMI Palm Beach County, and Erin Brooker Lozott, BCBA-D, CCC-SLP, the Program Director at Els for Autism, about autism and mental health.

Why is Mental Health Awareness so important regarding treatments and therapies for the autism community?

Cheryl: “Children and adults with autism are likelier to experience a mental health condition than their neurotypical peers. According to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) 70 percent of autistic individuals are diagnosed with one mental health condition, and up to 40 percent are diagnosed with two or more mental health conditions. However, recent research suggests these numbers are even higher.

“A study published in the Journal of Clinical Psychiatry found that mental health conditions were already present in nearly 45 percent of preschool children with autism. In contrast, this study found that only about 14 percent of children without autism experience mental health conditions. In addition, several studies found that as individuals with autism grow older, the prevalence of mental health conditions increases.

“Despite these staggering statistics, there is a shortage of mental health professionals understand autism. In addition, the mental health and autism worlds can seem to be distinctly different systems of care, which often creates a barrier for individuals with autism to find the mental health support they need.”

Erin: “Due to 70 to 95 percent of children and adolescents with ASD having at least one co-occurring psychiatric disorder and 73 to 81 percent of adults with ASD meeting the criteria for at least one current co-occurring psychiatric disorder (Mosner et al., 2019), it is critical for providers working in the field of autism to have competencies in evidence-based practices for autism and mental health and mental disorders to make a change.”

As you both are mothers of daughters with autism, what could you tell me second-hand about your daughter’s experiences with mental health and autism?

Cheryl: “As a parent of a now adult daughter with autism and as a clinician who is an autism specialist, I continually witness the devastation untreated co-occurring mental health conditions cause. In many cases, these mental health challenges cause a greater impact on quality of life than autism challenges do and can lead to crises. This was the case for my daughter when she reached adolescence. Professionals continued to focus on her autism, and she received labels of ‘difficult,’ ‘defiant,’ and ‘manipulative’ rather than ‘overwhelmed,’ ‘depressed,’ and ‘anxious.'”

Erin: “From my daughter’s perspective, she is constantly trying to figure out why she must ‘feel the way she feels,’ ‘act the way she acts,’ and why she isn’t and can’t be like the ‘other girls.’ My daughter’s experiences with mental health have always seemed to take the front seat to her diagnosis of autism, with depression and anxiety causing her the greatest of struggles. In addition, she has experienced bullying and difficulty maintaining established friendships. My daughter has learned to look for the ‘yellow versus red flags’ to ensure she doesn’t misperceive levels of friendship or kindness. Finally, my daughter has had to experience going to multiple doctors and therapists continuously. During these appointments, people constantly discuss her areas of need versus her incredible strengths and talents. She now begs for the day she won’t have to see another doctor again. All this said, my daughter also understands the gifts her diagnoses bring and holds on to all the positives having a unique brain has to offer.”

What are some misconceptions about co-morbidities of mental health challenges and autism?

Cheryl: “There are several misconceptions about autism and co-occurring mental health challenges. Most are due to the lack of awareness and limited information on this topic. The most common, and perhaps most damaging, is the perception that any challenge a person with autism has is attributable to their autism. For this reason, the mental health of children and adults with autism is often neglected. This leads to untreated mental health conditions, which worsen and are harder to treat. In addition, as was the case with my daughter and many clients, it takes a mental health crisis to get the proper mental health support in place finally.”

Erin: “That medicine can fix the co-morbidities, one type of therapy alone will make the change needed for a life of happiness and success, and even with all the best doctors, therapists, and perfect pharmacological intervention, things will be fixed. Mental health and autism are about management; it is not about fixing anything. It is a lifelong journey that requires specialized care and a huge support system. Mental health and autism are about learning how to embrace the most challenging moments and celebrate the times of success, peace, and happiness. It is so difficult. The best analogy I can give is it is like having to work all day and night, and though you put all your effort and dedication into the practice, the difficulty level often (but not always) stays relatively the same.”

What are the resources in the community for NAMI and the Els for Autism Foundation for dual diagnoses of autism and mental health issues?

Cheryl: “I have strongly advocated for bridging the autism and mental health worlds for over 25 years. It brought me to my profession and continues to drive my professional and advocacy work. I lead the FAU Center for Autism and Related Disabilities (FAU CARD) co-occurring autism and mental health skilled task force. NAMI and Els for Autism are members of this vital initiative to increase awareness and mental health support for individuals with autism. This task force is a collaboration between CARD, community and private clinicians, mental health providers, universities, educators, and agencies working together to increase the capacity of professionals who can support individuals with autism spectrum disorder and mental health needs and their families.

“NAMI of Palm Beach County does an excellent job of increasing awareness of co-occurring autism and mental health conditions through community collaborations, speaker series, conference presentations, publications, and more. These exciting collaborations are helping to bring the autism and mental health worlds together. However, continued vigilance is needed to assure appropriate mental health treatment and support options are available for individuals with autism.”

Erin: “In addition to Els for Autism, NAMI, and FAU CARD, here are some additional resources: Jennifer Smyth (LMHC)Southeast Florida Behavioral Health, 988 Lifeline (formally known as 211), Vocational RehabilitationAgency for Persons with Disabilities.”

About the Interviewees:

Cheryl Checkers, M.S., LMHC, is the President of NAMI, PBC (National Alliance on Mental Illness, Palm Beach County). She is a Licensed Mental Health Counselor (LMHC) and the Founder of Checkers Counseling and Consulting. She is also the Clinical Consultant for FAU-CARD for the dual diagnosis of autism and mental health disorders.

Dr. Erin Brooker Lozott, Ed.D., BCBA-D, CCC-SLP is the Els for Autism Foundation® Program Director. Dr. Lozott is a doctoral-level board-certified behavior analyst and licensed speech-language pathologist. She is appointed to a scientific advisory committee and a clinical excellence committee for international autism organizations. She has co-authored several publications on autism spectrum disorder topics and has presented and consulted extensively nationally and internationally.