By Mitch Leppicello, LICSW, ASD and Mental Health Specialist
“Melanie looks sad, depressed and doesn’t have any close friends. Why does Charlie always defy me? Jack’s teacher thinks he has ADHD, how can I tell? Sam said he doesn’t care if he lives anymore. Carrie worries about everything…she has strange obsessions and compulsions. Our adolescent son has been diagnosed with four or five different mental disorders, which one is right?” These are just some of the very typical reports I hear from parents when they bring their children to see me for their emotional and behavioral problems. The thing these children and teenagers all have in common is Autism Spectrum Disorder or ASD.
ASD is the only child/adolescent psychiatric disorder with the greatest comorbidity compared to that of other children and adolescent psychiatric disorders. Psychiatric disorders, like ASD and autism, are thought to develop as early as birth and early childhood; unlike other psychiatric disorders that develop later in life; in adolescence, for example. ASD and autism are often referred to as developmental disorders or neurodevelopmental disorders. In the case of ASD, it’s common for all three terms (psychiatric disorder, neurodevelopmental disorder, and mental health disorder) to be used interchangeably. These and other disorders are included in the classification manual used in mental health and psychiatry called the DSM (Diagnostic Statistical Manual for Mental Disorders). The American Psychiatric Association (or AMA, the group of physicians whose specialty is psychiatry and mental health disorders) edits the manual. All mental health professionals use the DSM to make diagnosis for children, adolescents, and adults. “Comorbidity” is primarily a medical term that is used to describe how mental disorders co-occur with one another. ASD has the highest comorbidity of mental health disorders and occurs more often in children and adolescents than adults. There is little understanding however about why comorbidities occur in some individuals but not in others.
The main reason for the higher rate of comorbidity in youth is likely due to the disparity in childhood development. Younger children have less developed cognitive and language skills which affect their ability to communicate emotions and thoughts. In preschool and early childhood, the main form of communication is through playful behaviors. Although we promote positive ways of behaving, children often also act out negatively, or “misbehave”. Young children have not developed the skills they need to regulate or modulate typical stressors through expressive language. This makes it harder for parents to read signs of stress through the child’s non-verbal acting out. It becomes easier when kids use their words to communicate. Most of us agree that’s it’s harder to read signs of stress through non-verbal acting out, than when kids use their words to communicate.
Many factors go into how well a child regulates or copes with their distress. In general, they are biological, genetics/dna (nature) and environment, family stability and functioning (nurture). What makes ASD so difficult to assess, diagnose, and treat is that ASD affects in so many different parts of the brain. It intersects boundaries of psychiatric problems from neurological, to emotional, to behavioral, to learning, to muscle and motor, and finally to the autonomic nervous system. No other psychiatric disorder has the distinction of affecting so many different areas of the brain and, in turn, affecting so many areas of their life. Individuals with ASD have less adaptability to handle typical life stressors and disappointments compared to other kids their age. Now let’s imagine, in a very over-simplified way, what it’s like to live with ASD. These youth have problems communicating either to others, from others or both. They also have neuro-challenges relating socially (friends, family, classmates, coworkers), feeling connected, and decoding the social nuances within the context of situations within their peer group. Youth with ASD also have problems with rigid thinking and inflexibility, making it hard to make transitions and adjust to changes in their environment. This may be why staying on one topic, enjoying one activity, seeing one kind of movie or game; being with one familiar person is so much more preferred. Transitions and changes in the game plan without warning are for individuals with ASD like kryptonite is to Superman!
Other characteristics and areas of difficulties with ASD include: speech/language problems, hypo/hyper sensory integration, learning disorders, fine and gross motor incoordination. All individuals with ASD have their own degree of difficulty within their developmental delay that can affect their level of functioning. Some parts of their development are very delayed while other slivers of their development excel to the level of kids ten years older. ASD as a diagnostic category does not require the presence of any additional problems or comorbidities. They are simply more likely to co-exist as additional problems to the already challenging ASD. Comorbidity is not specific to just one additional mental health disorder. Numerous comorbidities are just as common. When clients ask me if I ONLY see people with ASD, I tell them it would be very difficult due to the frequency of comorbidity. I have to be able to know depression with ASD versus depression without ASD. I tell people I need to know as much about what ASD is as what it is not. Below are comorbidities common for individuals with ASD.
ADHD is a cluster of problems with what are called “executive functions” of the brain including: social processing, organization, decision making, judgment, foresight or “neuro-previewing”, hindsight, perspective taking or Theory of Mind, short term and working memory, attention, impulse control, and others. ADHD is very complicated to evaluate and diagnose. In my experience, ADHD is often misdiagnosed in many individuals who appear distracted, impulsive or have problems with attention. Many people with ASD who have anxiety, depression or other psychiatric disorders may come across with some symptoms of ADHD, but do not meet the criteria for ADHD. Worse yet, many are diagnosed with ADHD and then treatment begins, thereby forgoing and dismissing further assessment for additional understanding of other possibilities like anxiety, depression, and…. ASD. DISRUPTIVE BEHAVIOR DISORDERS (OPPOSITIONAL DEFIANT AND CONDUCT DISORDERS)
In one study, nearly 70% of children with ASD also have ADHD and Disruptive Behavior Disorders.
On the surface ODD and CD are predicated on negative behaviors that are manifested by the following: loud outbursts, yelling, refusing and rejecting of others’ help and redirection to get calm, appearing disrespectful, defying authority, destroying property, and acting vengeful, and vindictive. However, these disruptive behaviors of individuals with ASD are rarely if ever spiteful and vindictive and are manifested most often when they feel threatened, cornered, and unable to get out of the embarrassing, humiliating and extremely stressful situation in which they find themselves. This common stressful situation often triggers the fight or flight response. That’s when “disruptive disorders” are most often identified for kids with ASD. This is NOT Oppositional Defiant Disorder or Conduct Disorder, but rather ill-fated attempts to find inner control and external supports to problem-solve, self-calm and self-regulate their bodies and their brains. Positive cognitive, behavioral, and relational strategies that strengthen their motivation to do well are very effective treatment and support models for kids with oppositionality and severe rigidity.
Mood disorders commonly include various forms of depression, which also includes bipolar. Mood disorders are thought to be genetic with one or both parents or a family member with a mood disorder. They are also developed through their external environmental experiences combined with problems coping with life stressors. Youth with ASD commonly experience depression, specifically a mood disorder known as Dysthymia. This mood disorder is associated with significant degrees of hopelessness, worthlessness, and pervasively low self-esteem. When we think about how youth with ASD experience their social world as perpetually confusing and confounding, we can better understand how they might develop deep sadness, hopelessness, and depression.
Many children with ASD, as many adults before them, experience a world in which they are unable to fit-in with their peers. This difficulty fitting in may be that of the child not having the skills or their social and familial support system may be less than they need for strategic social skill building. Generally, it’s a combination of the two. One child said it would be easier for him to find a way to Mars before he could find a way to fit in with his middle school classmates. One parent, echoing many before them, said they would have done something long ago to help support and strengthen their child’s social support system and communications had they known about the many problems of ASD. “He was diagnosed with all kinds of things, but never [ASD].” These persistent and pervasive negative experiences lead many to develop mood disorders that grow into worsening depressive illnesses that can cause suicidal thoughts and even plans to “… be better off dead than alive and not ever be noticed by anyone…”. It’s rare for individuals with ASD to follow through on their suicidal feelings. However, ALWAYS take suicidal thoughts and gestures seriously and get professional mental health help immediately! Individuals with ASD have a higher risk to act out if their signs of suicidal thoughts and feelings are ignored or not communicated to others. The good news is that depression is very treatable once it’s identified. Be aware, supportive, understanding, and positively relational with your child with ASD. Don’t hide from their depressive signs and symptoms. They’ll appreciate your attempts to help them after they’ve been treated and feel better.
There are many kinds of anxiety disorders that co-occur with ASD. Anxiety and depression are the two “emotional” or psychiatric disorders that most often co-occur with ASD. I call anxiety the “stress disorder” because of the many associated fears and phobias. Social anxiety or agoraphobia is also prevalent for youth with ASD. Gathering and “hanging out” in crowds of kids during lunch, recess, or after swim practice can be very anxiety producing. Many kids with ASD and social anxiety prefer to engage in their preferred or favored activity and assiduously avoid social situations like the informal gatherings mentioned above. Thereafter, the negative triggers associated with this anxiety persists leaving them few to no options to adapt or rehearse “re-exposure” to the stressful social situation. Many experts believe the anxiety for youth with ASD is linked in large part to the difficulty reading others, problems communicating spontaneously by either starting and/or maintaining conversations beyond small talk or the usual amount of developmentally appropriate peer “jousting” or teasing and taunting that so frequently occurs between friends. For youth with ASD, this can feel very threatening because it is so difficult to read and interpret.
Individuals with ASD may also experience panic attacks, which can feel to many like a heart attack. Seek medical help immediately when experiencing anything unusual related to heart palpitations or arrhythmic heart sensations. Many youth with ASD have “repetitive behaviors.” They might, for example, hyperfocus on keeping books organized on the book shelf or folding their clothes in a particular way, or knowing the rules to games (becoming overly upset when others don’t exactly follow these rules). Youth with ASD have what’s referred to as OCD-A (A for autism) or ASD with OCD-like characteristics. Therapies like cognitive behavioral therapy and/or mental health medicine are very common treatments for social anxiety, panic attacks, and other forms of anxiety and are sometimes very appropriate for helping individuals with ASD.
PTSD/ACUTE STRESS DISORDER
This form of anxiety disorder is developed most often when the individual with ASD has experienced such a profound degree of distress that it is clinically impairing to them. Youth with ASD and comorbidity of PTSD may never be diagnosed because they are so rarely assessed for it. Mental health professionals: Whether you regularly treat clients or patients with ASD or not, remember to acknowledge and assess the life experiences of individuals with ASD because of the combination of overt and covert teasing, taunting and pervasive social exclusion and isolation often associated with early adolescent ASD.
Individuals with PTSD or acute stress disorder may appear paranoid or hyper-vigilant. This means the individual is not regulating their emotions and needs help or intervention to regulate. Individuals with ASD can’t solve problems when their brain is in a fight or flight mode and sense threats at every turn. Many kids in elementary through high school report this sensation and experience the feeling of being threatened by actually re-experiencing some past or negative traumatic event or experience. Having untreated anxiety like PTSD prevents others from learning social skills as well as feeling calm in their learning environment.
ADJUSTMENT DISORDERS WITH ANXIETY, DEPRESSION, MIXED EMOTIONS, AND CONDUCT
This group of psychiatric disorders is a typical co-occurrence for individuals with ASD. The reason for this usual comorbidity, in my opinion, lies in the challenge for individuals with ASD and their attempts to navigate the complexity and unpredictable day-to-day events of everyday life at their own developmental stage of life. Adjustment disorders occur with ASD, for example around usual life transitions, such as moving to a new school, parents separating, a new sibling in the house, a sick or dying pet, re-arranging a room in the house, changing the schedule or setting limits on activities otherwise pre-occupied. Problems adjusting occur at each stage of growth and development from pre-puberty (latency) to puberty, adolescence to adulthood…marriage, parenting, etc….. People with ASD will always have to adjust and cope with their ASD regardless of the the stage of life in which they find themselves. How well they adjust depends, among other things, on a supportive understanding home and educational environment, interventions or “action” for their ASD as early and often as possible.
PHYSICAL AND OTHER COMORBIDITIES
Some of the other comorbidities to ASD include: sleep disorders or sleep disturbance, allergies and nutrition or dietary restrictions, sensory integration differences that may be too much sensory input (sensory avoidant) or too little sensory input (sensory seeking). Many individuals with ASD have a greater chance of having a seizure disorder than those without ASD, even though we don’t understand the onset of seizures in general. Many kids with ASD have hypotonia and low muscle coordination. It’s not uncommon for teens originally diagnosed with Tourette’s Syndrome, Tic disorder, or Fetal Alcohol Syndrome/Effect (FAS/E) to also have ASD.
Imagine living with all of these challenges and being told to change and be different than you were born ALONG with having some of these co-occurring mental health and physical health issues. Oh, one more thing…individuals with ASD have to live in a world where all the above is considered disordered, different, and disturbed. Acceptance is elusive for kids with ASD.
I encourage individuals to obtain a thorough evaluation from a mental health professional who has experience assessing and treating ASD and prevailing comorbidity. Remember, the better we understand ASD, the more prepared we are to help!
Mitch Leppicello, LICSW is an ASD and mental health specialist and owner of East Metro Family Counseling in Woodbury, MN. He provides therapy, consultation, and professional development about ASD and other mental health conditions. You can contact Mitch at firstname.lastname@example.org or visit his website at www.eastmetrofamilycounseling.com.