What’s the connection and what should parents and caregivers look for?
By Erica Rimlinger
Depression in all children, with or without a disability, remains a concern. According to a study published in the March 2019 issue of the Journal of Pediatrics, 3.2% of children between the ages of 3 and 17 have been diagnosed with depression.
Adolescents with disabilities, particularly those with autism, have a higher risk for depression, according to multiple studies. These studies vary widely on how much higher this risk may be. Further complicating matters, developmental disabilities and autism spectrum disorders can mask the signs and symptoms of depression — or at least the ability to report one’s symptoms. This masking makes detecting depression or anxiety in a child more difficult, not only for researchers, but also for parents and families.
Dr. Carmen López-Arvizu, medical director of the Kennedy Krieger Institute’s psychiatric mental health program, spoke about this concern. López-Arvizu treats individuals with psychiatric illness in the context of developmental disabilities and is a faculty member in the department of psychiatry at Johns Hopkins Hospital.
Is having a disability a risk factor for depression?
Not all disabilities are the same and we can’t generalize the risks of mental health comorbidities. Not many studies exist that specifically investigate the mental health of individuals with intellectual disabilities beyond prevalence reporting. We are seeing more studies coming out on autism, but we lack the lifelong trajectory data on individuals with mental health problems. The National Institute of Mental Health estimated in 2017 that approximately 19% of all adults older than 18 in the United States live with mental illness. They do not separate disability from that number.
Are children with autism at greater risk for depression?
Studies on this issue seem to be conflicting. Yes, the results are conflicting because it depends on the population’s language and cognitive function. The results reflect the difference between those who are able to communicate their depressive symptoms and the ones who are unable to do so. Research is less inclusive of the lower-functioning individuals with regards to mental health.
How can parents tell the difference between the expected mood changes of childhood and teenage years and a mood disorder?
Parents need to keep a closer eye on their adolescents with disabilities as the symptomatology might be subtle. Parents are the best advocates for their children. They are the first to notice a difference in mood or behavior. When those differences happen, it is a priority to consult with their primary care doctor to rule out any condition that can be addressed that might affect behavior. We often see ear or urinary infections that present with behavioral changes. We should never assume a situation is behavioral or primary to the disability.
If there is a concern that seems more severe or there is no identifiable physical cause, the time to take action is as soon as possible. We should not let the stigma of a psychiatric evaluation get in the way of seeking mental health support.
What experience or qualifications should parents seek in a mental health practitioner if their child has autism?
The answer depends on what you are trying to address. The individual should be a psychologist who uses evidence-based treatments that have been studied in autism or in the specific difficulties that are the target for treatment such as anxiety, depression or poor social skills. If the patient is not verbal and the goal is to address challenging behaviors, you will need a behavioral psychologist. If you don’t know where to start, seeing a neurologist, a developmental pediatrician or a child psychiatrist who has experience in treating individuals with autism can be helpful. These professionals can guide you on the more specific treatment approaches indicated for the presenting problem.
Is there a difference in the way depression is diagnosed in kids with disabilities?
The criteria are the same. The difference is in how to ask the questions that represent the symptoms. It takes experience and tact to do a full review of symptoms. Diagnosis and treatment of mental health conditions in people with developmental disabilities can be challenging and has to be adapted to the individual. Limitations in the ability to self-report symptoms of mental distress may mean that health care needs can go unrecognized and unmet.
Health care professionals report feeling unqualified and uncomfortable caring for patients with disabilities. Disability education should be part of cultural competency requirements in medical education.
Do differences exist in treatment?
Psychopharmacological treatment is similar. Finding clinicians who are educated or willing to learn about this population is much more difficult. We notice this more when psychotherapy is indicated. Trained clinicians who understand disabilities, either physical — for example, spina bifida or cerebral palsy — or cognitive, like intellectual impairment or autism, are very rare. At Kennedy Krieger Institute, we are lucky to have them, but families report this challenge as a barrier to obtain treatment or even an initial evaluation.
Are there preventative steps parents of kids with disabilities can take to forestall depression?
Yes, to a degree. We know social environments are increasingly being recognized as contributors to poor mental and physical health. Environmental contributors are highly relevant to the health of persons with developmental disabilities. Well-identified examples are the lack of adequate social interactions and feelings of exclusion and accessibility to the world in general.
Literature has shown individuals with cerebral palsy and comorbid neurodevelopmental disorders have a higher risk of mental health disorders. However, a diagnosis of CP or another developmental disability alone brings a higher risk for inadequate access to health care and health screenings, trauma from abuse, neglect or intrusive therapeutic procedures, poverty related to unemployment and underemployment and social isolation stemming from communication difficulties, transportation barriers and limited social opportunities. All these factors can be treatable and modifiable to avoid their contribution to primary depression or anxiety.
We still have much to do. We know that community support, standards of living and working conditions and opportunities, as well as political and economic factors, affect access to care for identification and treatment of mental illness.
However, one determinant of positive outcome is family involvement and advocacy. They can make all the difference.
Erica Rimlinger is a freelance writer. This article originally appeared in Baltimore’s Child.