Sleep Problems in Children on the Autism Spectrum

Sleep Problems in Children on the Autism Spectrum

It is well documented that in addition to the core symptoms of social/communication deficits and restricted repertoire of behaviors, children with autism spectrum disorders (ASD) often experience other comorbid (co-occurring) conditions. In fact, studies estimate that approximately 70 to 84 percent of children with ASD might meet the criteria for a comorbid disorder or condition. Co-occurring conditions include mental health (ADHD, anxiety, depression), neurological (seizure disorder), physical (cerebral palsy, atypical gait), and medical (allergies, asthma, gastrointestinal) conditions. In addition, unusual responses to sensory stimuli, chronic sleep problems, and low muscle tone can occur in individuals with ASD.

Most parents have had some experience with a child who has difficulty falling asleep; wakes up frequently during the night, and/or only sleeps a few hours each night. Although temporary sleep difficulties are an expected phase of child development, ongoing and persistent sleep disturbances can have an adverse effect on the child, parents and other family members. Indeed, a child’s sleeping problems can quickly become a daily parenting challenge. Consequently, we should also expect that sleep problems in children and adolescents with ASD will represent an additional burden on their families, as they attempt to deal with the challenges associated with the symptoms of ASD.  Moreover, there is evidence to suggest that insomnia in itself can aggravate autistic symptoms and further impair adaptability.

Children with ASD appear to experience sleep disturbances more frequently and intensely than typically developing children. Previous population-based and retrospective clinical studies have found a high rate of sleep onset problems in young children with ASD compared to typically developing children. Between 44 and 86 percent of children with autism have a serious problem with sleep. By comparison, between 10 and 16 percent of children in the general population have difficulty sleeping. Research reports the following instances of sleep issues in children with autism:

• 54% displayed resistance to bedtime
• 56% experienced insomnia
• 53% suffered from parasomnias, such as sleepwalking or night terrors
• 25% experienced sleep-disordered breathing, including sleep apnea
• 45% had difficulty waking up in the morning
• 31% experienced daytime sleepiness

Research

Emotional and behavioral problems are related to sleep problems in the general child population, and have also been associated with sleep problems in children with ASD. For example, a previous study of children with Asperger syndrome or high-functioning autism found that those with chronic insomnia were characterized by more emotional and behavioral symptoms than their peers. Co-occurring conditions, such as gastrointestinal (GI) problems, sensory sensitivities, attention deficit hyperactivity disorder (ADHD) and anxiety are also known to disrupt sleep. Although research suggests that children with ASD have a high rate of sleep problems, even when adjusted for other mental health problems, the lack of longitudinal data and population based studies has limited our ability to understand the complex relationship between co-occurring emotional and behavioral problems and sleep difficulties in this group of children. In order to examine the need for increased sleep health care in children with ASD, sleep problems should be longitudinally studied in a total population setting. This approach allows researchers to examine potential risk factors and assess the development of sleep problems over time, as well as plan for early prevention and identification.

A longitudinally-based study published in the journal Autism examined the prevalence and chronicity of sleep problems in children with problems believed to be typical of ASD. The children were assessed for autistic symptoms, sleep problems, and emotional and behavioral problems. Overall, the frequency of chronic insomnia was more than ten times higher in autistic children compared to non-autistic children (39.3% v 3.6%). These children also developed more sleep problems over time, with an incidence rate at of 37.5% compared to 8.6% in the controls at age 11-13 years. Likewise, sleep problems were more persistent over time in children with autistic symptomatology, with a remission rate of only 8.3% compared to 52.4% in the control group. Despite few girls being represented in the study, sleep problems were significantly less prevalent in girls than boys, and that their sleep problems were also more transient. The presence of comorbid attention-deficit/hyperactivity disorder (ADHD) was a strong and independent risk factor for sleep problems in the ASD group. While emotional and behavioral problems explained a large proportion of the association between sleep problems and autism, children with autistic symptoms had a three-fold increased risk of sleep problems.

Implications

Previous research and results of this longitudinal population-based study show a clear association between autism symptoms and sleep problems and support the generally high prevalence rates of sleep problems reported in children with autism. Research also suggests that sleep disturbances may represent early warning signs of autism, exacerbate autism symptoms severity, significantly decrease the health-related quality of life of individuals with ASD, and affect the mental health of family members. Problematically, sleep problems tend to exacerbate other issues characteristic of the ASD. For example, daytime sleepiness from lack of sleep often results in more severe repetitive behavior, hyperactivity, inattentiveness, and aggression during the day as well as deficits in higher-order and complex cognitive functions. This argues for the assessment and treatment of sleeping problems as a standard and integrated part of the symptom management of ASD. Diagnosing and treating sleeping problems in autistic children is important both to relieve symptom severity and improve quality of life for children and their families.

Key References and Further Reading

Adams, H. L., Matson, J. L., Cervantes, P. E., & Goldin, R. L. (2014). The relationship between autism symptom severity and sleep problems: should bidirectionality be considered? Research in Autism Spectrum Disorders, 8(3), 193–199. doi: 10.1016/j.rasd.2013.11.008.

Astill, R. G., Van der Heijden, K. B., Van Ijzendoorn, M. H., & Van Someren, E. J. (2012). Sleep, cognition, and behavioral problems in school-age children: a century of research meta-analyzed. Psychological Bulletin, 138(6), 1109–1138. doi: 10.1037/a0028204.

Devnani, P. A., & Hegde, A. U. (2015). Autism and sleep disorders. Journal of pediatric neurosciences, 10(4), 304–307. doi:10.4103/1817-1745.174438

Hodge, D., Carollo, T. M., Lewin, M., Hoffman, C. D., & Sweeney, D. P. (2014). Sleep patterns in children with and without autism spectrum disorders: developmental comparisons. Research in Developmental Disabilities, 35(7), 1631–1638. doi: 10.1016/j.ridd.2014.03.03

Mannion, A., Leader, G., & Healy, O. (2013). An investigation of comorbid psychological disorders, sleep problems, gastrointestinal symptoms and epilepsy in children and adolescents with autism spectrum disorder. Research in Autism Spectrum Disorders, 7(1), 35–42. doi: 10.1016/j.rasd.2012.05.002.

Mayes, S. D., & Calhoun, S. L. (2009). Variables related to sleep problems in children with autism. Research in Autism Spectrum Disorders, 3(4), 931–941. 

Mazurek, M. O., & Petroski, G. F. (2014). Sleep problems in children with autism spectrum disorder: examining the contributions of sensory over-responsivity and anxiety. Sleep Medicine. doi: 10.1016/j.sleep.2014.11.006.

Nadeau, J. M., Arnold, E. B., Keene, A. C., Collier, A. B., Lewin, A. B., Murphy, T. K., et al. (2014). Frequency and clinical correlates of sleep-related problems among anxious youth with autism spectrum disorders. Child Psychiatry & Human Development. 

Reynolds, AM, Soke, GN, Sabourin, KR, et al. (2019). Sleep problems in 2- to 5-year-olds with autism spectrum disorder and other developmental delays. Pediatrics. 143 (3):e20180492

Richdale, A. L., & Baglin, C. L. (2015). Self-report and caregiver-report of sleep and psychopathology in children with high-functioning autism spectrum disorder: a pilot study. Developmental Neurorehabilitation, 18(4), 272–279.

Sikora, D. M., Johnson, K., Clemons, T., & Katz, T. (2012). The relationship between sleep problems and daytime behavior in children of different ages with autism spectrum disorders. Pediatrics, 130(Supplement), S83–S90. doi: 10.1542/peds.2012-0900F.

Sivertsen, B., Posserud, M., Gillberg, C., Lundervold, A. J., & Hysing, M. (2012). Sleep problems in children with autism spectrum problems: A longitudinal population-based study. Autism, 16, 139-150. DOI: 10.1177/1362361311404255

Schreck, K. A., Mulick, J. A., & Smith, A. F. (2004). Sleep problems as possible predictors of intensified symptoms of autism. Research in Developmental Disabilities, 25(1), 57–66.

Taylor, M. A., Schreck, K. A., & Mulick, J. A. (2012). Sleep disruption as a correlate to cognitive and adaptive behavior problems in autism spectrum disorders. Research in Developmental Disabilities, 33(5), 1408–1417. doi: 10.1016/j.ridd.2012.03.013.

Lee A. Wilkinson, PhD, is a licensed and nationally certified school psychologist, and certified cognitive-behavioral therapist. He is author of the award-winning books, A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools and Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBT. He is also editor of a text in the APA School Psychology Book Series, Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and Intervention in Schools. His latest book is A Best Practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools (2nd Edition).

© Lee A. Wilkinson, PhD

Autism and Special Education: What Parents and School Professionals Should Know

Autism and Special Education: What you Should Know

The number of children identified with autism in the United States has more than doubled over the last decade. This progressively rising prevalence trend, together with the clear benefits of early intervention, has created a sense of urgency among educators and parents to ensure that students on the autism spectrum are provided with the appropriate programs and services. This article focuses on special education eligibility and educational planning for children who may have an autism spectrum disorder (ASD). It includes guidelines to help parents and school professionals understand the requirements for providing legally and educationally appropriate programs and services to students who meet special education eligibility for autism.

Special Education

The Individuals with Disabilities Education Improvement Act of 2004 (IDEA) and the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) are the two major systems used to diagnose and classify children with ASD. The DSM-5 is considered the primary authority in the fields of psychiatric and psychological (clinical) diagnoses, while IDEA is the authority with regard to eligibility decisions for special education. The DSM was developed by clinicians as a diagnostic and classification system for both childhood and adult psychiatric disorders. The IDEA is not a diagnostic system per se, but rather federal legislation designed to ensure a free, appropriate education (FAPE) for all children with special educational needs in our public schools. Unlike the DSM-5, IDEA specifies categories of ‘‘disabilities’’ to determine eligibility for special educational services. The definitions of these categories (there are 13), including autism, are the most widely used classification system in our schools. Autism now ranks fourth among all IDEA special education categories and accounts for approximately 1% of the overall student population in our schools.

According to IDEA regulations, the definition of autism is as follows:

(c)(1)(i) Autism means a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age 3, that adversely affects a child’s educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences. The term does not apply if a child’s educational performance is adversely affected primarily because the child has an emotional disturbance, as defined in this section.

(ii) A child who manifests the characteristics of ‘‘autism’’ after age 3 could be diagnosed as having ‘‘autism’’ if the criteria in paragraph (c)(1)(i) of this section are satisfied.

While the DSM-5 diagnostic criteria for ASD are professionally helpful, they are neither legally required nor sufficient for determining educational placement. A medical diagnosis from a doctor or mental health professional alone is not enough to qualify a child for special education services. It is state and federal education codes and regulations (not DSM-5) that drive classification and eligibility decisions. In fact, the National Research Council (2001) recommends that all children identified with ASD, regardless of severity, be considered for special education eligibility under the IDEA category of autism. Therefore, it’s especially important for administrators, parents, advocates, teachers and non-school professionals to keep in mind that when it comes to special education, it is state and federal education codes and regulations (not DSM-5 criteria) that determine eligibility and IEP planning decisions. 

Children with a clinical diagnosis of ASD do not automatically receive special education, nor are students who are eligible for special education under the IDEA category of autism required to have a clinical diagnosis of ASD. An evaluation assessing eligibility for special education does not replace a clinical diagnosis of ASD, nor does a clinical diagnosis of ASD determine eligibility for special education. Although clinical diagnoses, psychiatric reports, and treatment recommendations can be helpful in educational planning, the provisions of IDEA are the controlling authority (not DSM-5) with regard to decisions for special education eligibility and placement. The child is eligible for services only by meeting the criteria for autism or another disability category under IDEA, and any applicable state criteria that are consistent with the IDEA definition.

School professionals must ensure that children meet the criteria for autism as outlined by IDEA or state education agency (SEA) and may use the DSM-5 to the extent that the diagnostic criteria include the same core behaviors. All professionals, whether clinical or school, should have the appropriate training and background related to the diagnosis and treatment of neurodevelopmental disorders. The identification of autism should be made by a professional team using multiple sources of information, including, but not limited to an interdisciplinary assessment of social behavior, language and communication, adaptive behavior, motor skills, sensory issues, and cognitive functioning to help with intervention planning and determining eligibility for special educational services.

Legal Issues

Research indicates that the proportion of published court decisions attributable to the autism classification under IDEA has risen rapidly. For example, children with autism were found to account for nearly one third of a comprehensive sample of published court decisions concerning the core concepts of free appropriate public education (FAPE) and least restrictive environment (LRE) under IDEA. Overall, the FAPE/LRE court cases were over 10 times more likely to concern a child with autism than the proportion of these children in the special education population. The disproportionate growth of autism litigation is likely due in part to school systems’ challenges in effectively addressing this complex disability and providing effective programs for individual children with autism. As more children are identified with autism, school districts are facing significant budgetary constraints and shortages of qualified personnel while parents are requesting additional and more expensive services. FAPE also invites autism litigation due to the uncertainty of the complexity and the diversity of the condition. Likewise, confusion between the legal (educational) classification of autism and the clinical definition of ASD has contributed to eligibility and placement controversies. Given the disparity between parent concerns and school practices, together with high costs, treatment/intervention controversies, and the complexity of ASD, it is understandable why parents of children with autism tend to be more prone to litigation than the parents of children with other disabilities (Zirkel, 2014). In order to address these legal issues, state and local policymakers must become more knowledgeable and sensitive about the legal and appropriate educational supports critical to children with autism and their families.

Guidelines

Legal and special education experts recommend the following guidelines for providing legally and educationally appropriate programs and services to students who meet special education eligibility for autism.

1. School districts should ensure that the IEP process follows the procedural requirements of IDEA. This includes actively involving parents in the IEP process and adhering to the time frame requirements for assessment and developing and implementing the student’s IEP. Moreover, parents must be notified of their due process rights. It’s important to recognize that parent-professional communication and collaboration are key components for making educational and program decisions.

2. School districts should make certain that comprehensive, individualized evaluations are completed by school professionals who have knowledge, experience, and expertise in ASD. If qualified personnel are not available, school districts should provide the appropriate training or retain the services of a consultant.

3. School districts should develop IEPs based on the child’s unique pattern of strengths and weaknesses. Goals for a child with ASD commonly include the areas of communication, social behavior, adaptive skills, challenging behavior, and academic and functional skills. The IEP must address appropriate instructional and curricular accommodations and modifications, together with related services such as counseling, occupational therapy, speech/language therapy, physical therapy and transportation needs. Evidence-based instructional strategies should also be adopted to ensure that the IEP is implemented appropriately.

4. School districts should assure that progress monitoring of students with ASD is completed at specified intervals by an interdisciplinary team of professionals who have a knowledge base and experience in autism. This includes collecting evidence-based data to document progress towards achieving IEP goals and to assess program effectiveness.

5. School districts should make every effort to place students in integrated settings to maximize interaction with non-disabled peers. Inclusion with typically developing students is important for a child with ASD as peers provide the best models for language and social skills. However, inclusive education alone is insufficient, evidence-based intervention and training is also necessary to address specific skill deficits. Although the least restrictive environment (LRE) provision of IDEA requires that efforts be made to educate students with special needs in less restrictive settings, IDEA also recognizes that some students may require a more comprehensive program to provide FAPE.

6. School districts should provide on-going training and education in ASD for both parents and professionals. Professionals who are trained in specific methodology and techniques will be most effective in providing the appropriate services and in modifying curriculum based upon the unique needs of the individual child.

Adapted from Wilkinson, L. A. (2017). A best practice guide to assessment and intervention for autism spectrum disorder in schools. London and Philadelphia: Jessica Kingsley Publishers.

Key References and Further Reading

Individuals with Disabilities Education Improvement Act of 2004. Pub. L. No. 108-446, 108th Congress, 2nd Session. (2004).

Kabot, S., & Reeve, C. (2014). Curriculum and program structure. In L. A. Wilkinson (Ed.), Autism spectrum disorder in children and adolescents:  Evidence-based assessment and intervention in schools (pp. 195-218). Washington, DC: American Psychological Association.

Mandlawitz, M. R. (2002). The impact of the legal system on educational programming for young children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 32, 495-508.

National Research Council (2001). Educating children with autism. Committee on Educational Interventions for Children with Autism. C. Lord & J. P. McGee (Eds). Division of Behavioral and Social Sciences and Education. Washington, DC: National Academy Press.

Twachtman-Cullen, D., & Twachtman-Bassett, J. (2011). The IEP from A to Z: How to create meaningful and measurable goals and objectives. San Francisco, CA: Jossey-Bass.

Wagner, S. (2014). Continuum of services and individualized education plan process. In L. A. Wilkinson (Ed.). Autism spectrum disorder in children and adolescents:  Evidence-based assessment and intervention in schools (pp. 173-193). Washington, DC: American Psychological Association.

Wilkinson, L. A. (2017). Best practice in special education. In L. A. Wilkinson, A best practice guide to assessment and intervention for autism spectrum disorder in schools (pp. 157-200). London and Philadelphia: Jessica Kingsley Publishers.

Wilmshurst, L. & Brue, A. (2010). The complete guide to special education: Expert advice on evaluations, IEPs, and helping kids succeed (2nd edition). San Francisco, CA: Jossey-Bass.

Wrightslaw: Special Education Law, 2nd Edition (2007).

Yell, M. L., Katsiyannis, A, Drasgow, E, & Herbst, M. (2003). Developing legally correct and educationally appropriate programs for students with autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 18, 182-191.

Zirkel, P. A. (2014). Legal issues under IDEA. In L. A. Wilkinson (Ed.). Autism spectrum disorder in children and adolescents: Evidence-based assessment and intervention in schools (pp 243-257).Washington, DC: American Psychological Association.

Lee A. Wilkinson, PhD, is a licensed and nationally certified school psychologist, and certified cognitive-behavioral therapist. He is author of the award-winning books, A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools and Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBT. He is also editor of a text in the American Psychological Association (APA) School Psychology Book Series, Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and Intervention. His latest book is A Best Practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools (2nd Edition).

© Lee A. Wilkinson, PhD