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Primary Steps for Primary Care: Evaluation and behavior management in children with developmental and/or cognitive delays

Management of behavioral problems in children can be challenging, particularly in those with developmental or cognitive delays. In these cases, determining the source of adverse behaviors and developing a treatment plan appropriate for the abilities of the child can be barriers to successful treatment. In this article,
Lisa Elliott, Ph.D. discusses the evaluation and management of adverse behavior in these special situations.

How are cognitive and developmental delays defined?

Intellectual and developmental delays (ID/IDD) are categorized as a neurodevelopmental disorder, and unlike earlier classifications are now recognized as a psychiatric disorder in the DSM-5. The intent behind this new classification was to focus more on adaptive reasoning and functioning since that is what often determines the level of support required, rather than solely on an IQ score. Global developmental delay is a diagnosis for children under the age of 5 years when clinical severity cannot be reliably assessed, whereas unspecified intellectual disability is generally rendered for children over the age of 5 years when formal assessment is too difficult to obtain due to various impairments.

ID/IDD based upon the diagnostic criteria in the DSM-5, requires deficits in intellectual/conceptual functioning such as reasoning, higher order problem-solving, planning, abstract thinking, judgment, academic learning and experiential learning and generalization. In addition, deficits in adaptive functioning are evident in social reasoning (i.e., awareness of others’ thoughts and feelings, social judgment and understanding, social problem-solving and interpersonal communication skills) and practical reasoning (i.e., personal self-care, household responsibility, transportation, finances, and school or work responsibility). Onset of ID/IDD is defined as occurring during the developmental period; age and presentation at onset depends on the etiology and severity of ID/IDD. A child with mild ID/IDD may not be identified until school age, when difficulty with academic learning becomes evident.

ID/IDD is generally lifelong, although it is not a static disability. In certain genetic disorders there may be periods of worsening, followed by periods of stabilization or with some genetic disorders there may be progressive worsening. Severity levels may also change over time, which may be influenced by underlying medical conditions, co-occurring conditions, early and ongoing interventions to improve adaptive functioning and environmental changes.

How common are comorbid mental health disorders in ID/IDD?

ID/IDD is a risk factor for co-occurring psychiatric disorders in children and adolescents. According to the Journal of the American Academy of Child & Adolescent Psychiatry (Volume 59, Number 4, April 2020), psychiatric disorders occur at least three times more often in children and adolescents with ID/IDD than in children with typical development. Especially high rates have been reported for oppositional defiant disorder (ODD), attention deficit hyperactivity disorder (ADHD), anxiety disorders and autism spectrum disorders (ASD). Also high rates have been reported for depression/mood disorder and obsessive-compulsive disorder (OCD). Furthermore, serious behavior problems have been noted to occur 2.5 to 4 times more often in children with ID/IDD as compared to children with typical development.

How do these comorbidities present in children with ID/IDD?

It is noted there exists limited knowledge on the presentation and course of these psychiatric disorders in children and adolescents with ID/IDD as compared to children and adolescents with typical development, however recent research has yielded helpful information for ADHD and anxiety in children and adolescents with ID/IDD. With regard to ADHD, children with ID/IDD experience a similar course to typically developing children although with more prominent hyperactivity symptoms in earlier development. Further, inattentive symptoms do not typically decrease in the teen years as they often do in typically developing children and adolescents. As for anxiety, co-occurring anxiety disorders in children and teens with ID/IDD vary in prevalence in age, just as in children and teens with typical development, however the reduction in the rate of separation anxiety disorder in children with ID/IDD occurs over a longer period of time.

What are risk factors for comorbid mental health disorders in ID/IDD?

The risk factors for co-occurring psychiatric disorders include the severity of the cognitive, adaptive and language impairments, age, sex, socialization deficits, parenting stress, trauma, low family SES and a single biological parent caregiver.  Co-occurring genetic syndromes and/or medical conditions are additional risk factors. Common pediatric illnesses and/or pain such as ear infections, reflux, toothaches, headaches, injuries, menstrual cycles etc., can present or exacerbate emotional and/or behavioral problems. Individuals with ID/IDD are at an increased risk for seizures, and post-ictal symptoms may include irritability, agitation, dysphoria or behavioral problems. Children with hearing, language or vision deficits tend to have higher rates of anxiety, increased frustration and behavioral challenges, while children with cerebral palsy or spina bifida have higher rates of inattention and hyperactivity. Sleep disturbance is associated with behavioral and psychiatric disorders up to 2.8 times more likely in children and teens with ID/IDD. Environmental and psychosocial challenges also contribute to be risk factors; children and teens need to be placed in environments, including education where demands and ability is equally matched. Children and teens with ID/IDD are highly sensitive to changes in their routines and their environment, which can contribute to psychiatric and behavioral problems. Finally, individuals with ID/IDD are at greater risk for trauma; often they are bullied and abused, contributing to psychiatric and behavioral challenges.         

What are important steps to take for treatment?

Early and consistent monitoring utilizing sensitive and specific developmental screening tools to help identify any delayed or underdeveloped skill is key, and even more critical is early intervention. Cognitive, behavioral and adaptive expectations should be guided by the child’s development not their age. A diagnosis of ID/IDD is a continued reassessment process. As noted previously, ID/IDD is not a static disability; the types and levels of interventions and supports may change over time. According to the Journal of the American Academy of Child & Adolescent Psychiatry (Volume 59, Number 4, April 2020), interventions aimed at environmental factors, communication, language, hearing, vision, motor or sensory function, feeding and co-occurring medical and/or psychiatric conditions may allow for new skill acquisition and improvement in adaptive functioning, thus early referrals and interventions are very beneficial and should be determined by the child’s needs.

The benefits of early psychosocial interventions are very well documented for children with ID/IDD especially for targeting severe behavioral problems, comorbid psychiatric disorders or psychiatric symptoms. Elimination or prevention of problem behaviors in children with ID/IDD often permits access to early intervention and preschool programs, and other supportive services. Obtaining a functional behavioral assessment is considered the best approach to identifying the events in a child’s environment that occur with problem behavior(s) (antecedents) and the reinforcers that strengthen and maintain the problem behavior(s) (consequences). Applied behavior analysis (ABA) utilizes principles of learning and behavioral science for addressing both comprehensive and problem-focused treatments for behavioral problems. ABA has strong empirical support and was found to be effective for behavioral problems in children and teens, ages 6-18 years old with ID/IDD. ABA interventions focus on increasing and improving communication, social skills, adaptive functioning, antecedent interventions, reinforcement strategies and extinction procedures. ABA also utilizes functional communication training to train children how to communicate using individualized communication strategies and reduce problem behaviors.

In addition, psychotropic medications are often used in conjunction with ABA to treat comorbid psychiatric disorders or specific psychiatric symptoms in children and adolescents. A referral to a pediatric and adolescent psychiatrist can be highly beneficial for helping with behavioral and/or psychiatric disorders.   Finally, parents/caregivers will need social supports, psychoeducation likely throughout their child’s lifespan as well as recommendations for various community, school, government and possibly legal/financial supports.


Contributing staff

Lisa M. Elliott, Ph.D.
Licensed Psychologist and Clinic Manager
Cook Children’s Medical Center – Denton Behavioral Health Clinic 


Related content

Cook Children’s Behavioral Health


References

Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition. American Psychiatric Association. 2013

M. Siegel, K. McGuire, J. Veenstra-VanderWeele, K. Stratigos, B. King & the American Academy of Child and Adolescent Psychiatry Committee on Quality Issues. Practice Parameter for the Assessment and Treatment of Psychiatric Disorder in Children and Adolescents with Intellectual Disability (Intellectual Developmental Disorder). Journal of the American Academy of Child & Adolescent Psychiatry. 2020; 59:4, 468-496.

P. Kurtz, M. Leoni & L. Hagopian. Behavioral Approaches to Assessment and Early Intervention for Severe Problem Behavior in Intellectual and Developmental Disabilities. Pediatric Clin N Am 2020:67,499-511.

Yasamine Bolourian and Jan Blacher. Comorbid Behavior Problems Among Youth with Intellectual and Developmental Disabilities: A Developmental Focus. International Review of Research in Developmental Disabilities. 2018; 55, 181-211. 

Kerim M. Munir. The Co-occurrence of Mental Disorder in Children and Adolescents with Intellectual Disability/Intellectual Developmental Disorder Division of Developmental Medicine. Curr Opin Psychiatry. 2016; March 29(2): 95-102.

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