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PFA Tips: Anxiety and ASD in Children and Youth

By Stuart R. Varon, MD, FAPA

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Disclaimer – the thoughts expressed below are a compilation of both information provided from the article listed below, and from the writer’s own clinical experience.  This essay is not meant to be an exhaustive review of the subject nor a definitive description of the condition.  It is my hope that the information discussed can provide additional knowledge and perspective to caregivers for youths with Autism Spectrum Disorder struggling with co-occurring anxiety disorders.

It is estimated that between 3-5% percent of children and adolescents in the general population suffer with an anxiety disorder though there are variations to this estimate depending on the study, and the specific anxiety disorder being studied. Children and adolescents with an Autism Spectrum Disorder (ASD) are at increased risk for anxiety disorders. According to an analysis of multiple studies by Francisca J.A. van Steensel et al, 39.6 % of young people with ASD had at least one anxiety disorder that co-occurred with their ASD. The most frequent anxiety disorder using DSM –IV terminology was Social Phobia, followed by Obsessive Compulsive Disorder (OCD) and Social Anxiety Disorder.

What is anxiety?
Anxiety includes various mental and physiological phenomena. Anxiety can include emotions such as worry, fear or a sense of stress about either an actual or perceived event, either in the past, present or future.

What could anxiety look like?
Other expressions of anxiety may include behavioral and/or physical symptoms. Such symptoms may not be verbally expressed even if the child has language ability. This can be even more so in a child with ASD who has difficulties with expressive language. The child may not associate his/her conscious thoughts with the anxiety they are experiencing.  As such, caregivers and clinicians could misinterpret anxiety because the child may not identify symptoms/behavior as anxiety. Identifying anxiety in ASD children may be left up to the educated guess/detective work of the caregiver/clinician.

Everyone will experience anxiety, fear and stress in life; it does not constitute having a disorder. If the anxiety, fear or stress is managed by one’s own coping strategies or in concert with support from caring individuals, is low in frequency and does not impair one’s level of functioning or interactions (in more than a mild level), the condition is likely not a disorder. However, if the symptoms continue despite using coping mechanisms, the symptoms increase in frequency or intensity, and impair social/educational/vocational functioning, then the symptoms are likely part of an anxiety disorder needing intervention.

Anxiety Disorder in an autistic youth may present differently than in their neurotypical counterparts.  They may exhibit anxiety with disruptive behavior such as agitation, irritability, hyperactivity or impulsiveness. A youth may evidence a hyper focus on a particular subject or have increased perseveration or echolalia. They may demonstrate a change in quality, intensity and frequency of symptoms. Concrete thinking may interfere with the ability to “connect the dots” that a life situation is causing the anxiety. ASD youth may have a hard time processing and/or utilizing coping skills when they are needed. There may be difficulty reaching out for help to report changes to their caregivers/clinicians.

What are common triggers for anxiety?
Situations that spur anxiety in the ASD population, aside from the typical life experiences that would cause anyone stress, can include: sudden change in caregivers at home, on the bus, or at school; or changes in routine, circumstances or schedule. Anticipating or being a participant to either an unfamiliar social situation or one that will include a lot of sensory stimulation may cause anxiety and/or stress.  ASD youth with anxiety can over focus and get stuck on past negative experiences making their reaction to these experiences hard to let go of. In assessing an ASD patient for anxiety, It is important for the clinician to evaluate information not only from the child but the parent/caregiver to make a complete assessment to see what may have led to an anxiety reaction. While checklists and formal questionnaires may be used in the assessment process, the clinician needs to listen carefully to the “story” and descriptions in the patient’s /caregiver’s own words to get a full picture of what is being described.

Anxiety disorders can present with no known trigger or circumstance.  While it is natural to think that anxiety must be caused by something such as a particular stressor, trauma, or parent/family situation to name a few, the truth is that an anxiety disorder can present ‘just because’ like any other medical condition. Often there is no rhyme or reason why a person will develop an anxiety disorder.  Certain things can trigger the symptoms, but often anxiety disorders are present just like ASD is present without identifiable cause. Sadly, many caregivers will blame themselves that something they did caused the anxiety disorder in their loved one.  While we can all be better parents/caregivers, it is important not to blame oneself as the cause of an anxiety disorder. That being said, children with ASD and anxiety can be much more sensitive to normal life stresses and may be more reactive to stress and conflict than other family members.

Medication to treat Anxiety Disorder
Many youth with ASD are prescribed psychotropic medications for a variety of symptoms including anxiety. Medications should be started low and raising the dose (titrating) should go slowly as the child with ASD may be more susceptible to having side effects from psychotropic medications, including elevating anxiety symptoms. Stimulant ADHD medications (i.e. Ritalin, Adderall, etc.) may: increase OCD behavior such as perseveration and getting stuck on thoughts; reduce their ability to move on from negative emotions or thoughts; increase picking and/or chewing; or heighten feelings of anxiety.

Antidepressants such as Prozac, Zoloft, Lexapro etc. are generally used as first line agents for anxiety disorders in children (with or without ASD). Improvements from using these medications can include decrease in anxious behavior/thoughts, less mood reactivity and less disruptive behavior when a child’s rigidity is tested. It may cause less discomfort with sensory stimulation in some children. However, as medications are changing delicate balances in the chemistry in the brain, they may also unwittingly reduce the “good anxiety” in a child leading to disinhibition (disinhibition is when a child begins to take excessive risks or crosses over a boundary in acting out that they never used to cross). Side effects can also include agitation and /or manic behavior such as appearing hyper/super charged/or having too much energy. Often these negative side effects can be seen within one to two weeks from starting the medicine. The positive effects may not be seen until 4 – 8 weeks of starting a medicine.

Medications such as Risperdal and Abilify, sometimes known as neuroleptics or antipsychotics, can either be used alone or in conjunction with antidepressants to help treat anxiety in children with ASD. Sometimes they are used to help the antidepressant work or sometimes they are used alone to help decrease OCD-like behavior and/or mood reactivity due to rigidity. There are several potential side effects that can occur with these powerful medicines that should be discussed with your clinician prior to starting them. They may create a sense of motor restlessness which can include pacing or a discomfort such as ‘restless legs’ (akathisia). Though not dangerous, it can be very uncomfortable and should be discussed with your clinician.  The neuroleptics can also cause agitation, disinhibition or tremors.

With medication, improvement in anxiety symptoms may not be dramatic but can happen slowly over time. Often, I will ask if a child experienced a triggering circumstance since our last visit like one that occurred before treatment started. I will ask if the reaction to that trigger was the same, less than or more than before starting treatment.  By going through this exercise, we can sometimes pick up that the child has had a gradual reduction in the intensity, frequency and/or duration of a symptom, and we try to determine whether the quality of the symptom may have improved even if ever so slightly. Tracking frequency, intensity, duration and/or quality of symptoms or mood reactivity is helpful when judging whether medication is working.

Non-medical treatment for anxiety
Non-medical treatments of anxiety for youth with ASD can include individual, family and social group therapies. As part of those interventions, cognitive behavioral strategies and interventions may be used.  It is important that treatment include a parent management element so that parents/caregivers can be coached, trained and/or supported in helping their ASD youth manage, cope and function with their anxiety disorder. It goes without saying that caring for an anxious child with ASD can be very trying and exhausting and as such clinicians should be sensitive to this and give support and encouragement to caregivers in the process. The impact of caring for a youth with ASD in general can be stressful on the family unit, the couple relationship and siblings. It is important that these components be supported if necessary, through family, marriage and/or sibling therapy. It is not unusual that a parent and/or sibling themselves can develop an anxiety disorder. Unfortunately, due to the tremendous challenges in obtaining treatment for the ASD youth either due to limitations in scheduling and attending multiple appointments, sheer cost and mental exhaustion, family/couple/sibling therapies can be overlooked. In an ideal world, having caregivers as mentally healthy as possible will go a long way to help reduce the anxiety in a youth with ASD as these youth can be very perceptive to the mental health of those around them even though they may not be able to express it.

Always consult your health care provider for medical and psychiatric advice.

Additional Resources

Visit our online provider database to find psychiatrists, psychologists and therapists.

PFA Zoomcast Interview by Rob Long: Mackenzie L. Boon, Ph.D. Dr. Boon discusses anxiety in children and youth.

Van Steensel, Francisca J.A., Bogels, Susan M., Perrin Sean (2011). Anxiety Disorders in Children and Adolescents with Autistic Spectrum Disorders: A Meta-Analysis. Clin Child Fam Psychol Rev, 14, 302-317.

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