The Gender Gap in Autism: Where are the Girls?

The Gender Gap in Autism

There has been a significant increase in reported cases of autism over the past decade. Prevalence rates have risen steadily, from one in 150, to one in 110, and now to one in every 54 children (18.5 per 1,000 children aged 8 years). According to the CDC's Autism and Developmental Disabilities Monitoring (ADDM) Network, autism is 4 times more common among boys (1 in 34) than among girls (1 in 144). Statistics also indicate that referrals for evaluation of boys are nearly ten times higher than for girls. Moreover, girls are diagnosed with autism at later ages compared to boys. This gender “gap” raises serious questions because many girls with autism are being overlooked and will not receive the appropriate educational supports and services. 

Why are fewer girls being identified?  Why do parents of girls experience a delay in receiving a diagnosis?  Are there gender differences in the expression of the disorder? Answers to these questions have practical implications in that gender specific variations may have a significant impact on identification practices and the provision of clinical and educational services. Although few studies have examined gender differences in the expression of autism spectrum disorders, we do have several tentative explanations for the underdiagnosis and late identification of girls with autism spectrum disorder (ASD). They include the following. 

• Social communication and pragmatic deficits may not be readily apparent in girls because of a non-externalizing behavioral profile, passivity, and lack of initiative. Girls who have difficulty making sustained eye contact and appear socially withdrawn may also be perceived as “shy,” “naive,” or “sweet” rather than   having the social impairment associated with an autism spectrum disorder.
• The diagnosis of another disorder often diverts attention from autism-related symptomatology. In many cases, girls tend to receive unspecified diagnoses such as a learning disability, processing problem, or internalizing disorder. A recent survey of women with Asperger syndrome indicated that most received a diagnosis of anxiety or depression prior being identified with an autism spectrum disorder.
• The perseverative and circumscribed interests of girls with autism spectrum disorders may appear to be age-typical. Girls who are not successful in social relationships and developing friendships might create imaginary friends and elaborate doll play that superficially resembles the neurotypical girl.
• Although Students with ASD are more likely to be the target of bullying than typical peers, this may not be recognized in girls due to gender differences in preferred modes of aggression. For example, girls may use covert verbal, social, and psychological forms of aggression while boys tend to rely on confrontational and direct modes of bullying. As a result, the more subtle nature of relational and indirect aggression (social exclusion and rejection) used by girls may be taken less seriously than the more obvious, direct aggression exhibited by boys.
• Although girls may appear less symptomatic than boys, the genders do share similar profiles. Research suggests that when IQ is controlled, the main gender difference is a higher frequency of idiosyncratic and unusual visual interests and lower levels of appropriate play in males compared to females. As a result, the behavior and educational needs of boys are much more difficult to ignore and are frequently seen by teachers and parents as being more urgent, further contributing to a referral bias.
• Over reliance on the male model with regard to diagnostic criteria might contribute to a gender “bias” and underdiagnosis of girls. Clinical instruments also tend to exclude symptoms and behaviors that may be more typical of females with ASD. For example, assessment instruments such as the Autism Spectrum Rating Scales (ASRS) and Social Responsiveness Scale (SRS) have generally reported higher mean scores for boys than girls. The lower symptom scores for girls may reflect gender differences and expression of the phenotype. Recent research suggests that certain single test items may be more typical of girls than of boys with ASD, and examining symptom gender differences at the individual level might lead to a better understanding of the gender difference in ASD.
• Apart from biases in reporting or diagnosis, there is significant evidence to suggest that multiple biological factors contribute to the sex differences seen in autism. These include genetic and hormonal differences between males and females that may provide a “protective” mechanism for girls and lead to differences in symptoms and vulnerability to the disorder.

If girls with autism process language and social information differently than boys, then clinical and educational interventions based largely on research with boys may be inappropriate. As a result, autistic girls may receive less than optimal academic and behavioral interventions. If gender specific variations do exist, then the predictive validity of the diagnosis and developmental course may well differ between the sexes. Unfortunately, the consequences of a missed or late diagnosis can result in social isolation, peer rejection, lowered grades, and a greater risk for mental health and behavioral distress such as anxiety and depression during adolescence and adulthood. As a result, there is an urgent need for research to compare girls with autism to typical boys and girls to more fully comprehend the implications of being a girl on the autism spectrum. 

Best practice recommends that when a girl presents with a combination of social immaturity, restricted interests, limited eye gaze, repetitive behaviors, social isolation, and is viewed as “unusual” or “different” by parents, teachers and peers, the possibility of an ASD should be given consideration. Clinicians and school-based professionals should also question the presence of ASD in girls referred for internalizing disorders such as anxiety or depression. 

Best practice assessment and intervention guidelines are available from: A Best Practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools (2nd Edition.) and Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and Intervention in Schools. 

Adapted from Wilkinson, L. A. (2017). A best practice guide to assessment and intervention for autism spectrum disorder in schools (2nd Edition.). London and Philadelphia: Jessica Kingsley Publishers.

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)

Supporting Families with Autism in Our Schools

Parent Perspectives and Need for Support

Studies indicate that the demands placed on parents caring for an autistic child contribute to a higher overall incidence of parental stress, depression, and anxiety which adversely affects family functioning and marital relationships compared with parents of children with other disabilities. It is well established that social support is protective of optimal parent well-being and, therefore, a key element of intervention and treatment. Supporting and ensuring the family system’s emotional and physical health is a critical component of best practice.

School professionals working with families of children with autism should be aware of the negative effects of stress and anxiety and assist in offering services that directly address parental needs and support mental health. Negative outcomes include: (a) increased risk of marital problems; (b) decrease in father’s involvement; (c) greater parenting and psychological distress; (d) higher levels of anxiety and depression; (f) added pressure on the family system; (g) more physical and health related issues; (h) decrease in adaptive coping skills; and (i) greater stress on mothers than fathers. Parents often experience stress as they decide how to allocate their attention and energy across family members. For example, they may feel guilty about the limited time they spend with their spouse and other children, when so much of their attention is focused on the child with autism.

Understanding parent perspectives and targeting parental stress is critical in enhancing well-being and the parent-child relationship. School professionals who have knowledge and understanding of the stressors parents face are able to provide more effective assistance and support to the family. When families receive a diagnosis of autism, a period of anxiety, insecurity, and confusion often follow. Some autism specialists have suggested that parents go through stages of grief and mourning similar to the stages experienced with a loss of a loved one (e.g., fear, denial, anger, bargaining/guilt, depression and acceptance). Sensitivity to this process can help school professionals provide support to families during the critical period following the child’s autism diagnosis when parents are learning to navigate the complex system of autism services.

Mothers, in particular, may experience high levels of psychological distress, depressive symptoms, and social isolation. Research has found that nearly 40% of mothers reported clinically significant levels of parenting stress and between 33% and 59% experienced significant depressive symptoms following their child’s diagnosis of autism. Challenges in obtaining a timely ASD diagnosis and lack of appropriate treatment services and education were contributors to parental stress and dissatisfaction. Frequently reported important unmet needs include (1) financial support; (2) break from responsibilities; (3) rest/sleep; and (4) help remaining hopeful about the future.

Support, Educate, Advocate

School professionals can support parents by educating them about autism; provide guidance and training; assist them in obtaining access to resources; offer emotional support by listening and talking through problems; and help advocate for their child’s needs. It is especially important to acknowledge the value of parents’ unique and important perspective, validate their observations and concerns, and reinforce their roles as important contributors to the educational process. Professionals should also help the family understand what the identification or diagnosis of autism means and what the next steps are in addressing the issues of support and educational planning. This includes helping parents achieve a better understanding of how their child thinks and learns differently and become familiar with strategies that might help both at home and school. For example, parents can be taught evidence-based strategies that successfully support their children. Parent-implemented interventions have the potential to improve the child’s communication skills and reduce aggression and disruptive behaviors, as well as increase the functioning of the family system. Parents can learn to implement story-based interventions, visual supports/schedules, and Pivotal Response Treatment (PRT) strategies in their home and/or community through individual or group training formats. Professionals can also assist families by offering parent training in behavior management, which has been shown to increase parents’ self-efficacy and decrease their child’s problematic behaviors. Establishing a school-based parent support group may also be consideration.

Another major strategy for helping families with autistic children is providing information on the access to ongoing supports and services. This includes publicly funded, state-administrated programs such as early intervention, special education, vocational and residential/living services, and respite services. Professionals and family advocates need to be aware of the various programs and their respective eligibility requirements and help parents to access these services. Parents will also need timely and appropriate information regarding their children’s programs and services and may have questions about long-term educational planning. It is important to openly communicate the student’s strengths and weaknesses and encourage parents to play an active role in developing and implementing intervention plans and IEPs. Professionals should also remember that parents have a life-long role in their child’s development and realize that the family’s needs will change over time, and that they have other family responsibilities in addition to their child with autism. When schools use a family-centered approach and work to increase parental involvement and support, not only do the parents and children benefit, but school personnel do as well.

Adapted from Wilkinson, L. A. (2017).  A best practice guide to assessment and intervention for autism spectrum disorder in schools (2nd Edition). London and Philadelphia: Jessica Kingsley Publishers. 

Clickhere to read a free preview of “A Best Practice Guide…”

Key References & Further Reading

Barnhill, G. P. (2014). Collaboration between families and schools. In L. A. Wilkinson (Ed.), Autism spectrum disorder in children and adolescents:  Evidence-based assessment and intervention in schools (pp. 219-241). Washington, DC: American Psychological Association.

Estes, A., Munson, J., Dawson, G., Koehler, E., Zhou, X., & Abbott, R. (2009). Parenting stress and psychological functioning among mothers of preschool children with autism and developmental delay. Autism, 13, 375-387.

Feinberg, E., Augustyn, M., Fitzgerald, E., Sandler, J., Ferreira-Cesar Suarez, Z., Chen, N…Silverstein, M. (2014). Improving maternal mental health after a child’s diagnosis of autism spectrum disorder: Results from a randomized clinical trial. JAMA Pediatrics, 168(1), 40-46. doi:10.1001/jamapediatrics.2013.3445.

Giallo, R., Wood, C. E., Jellett, R., & Porter, R. (2013). Fatigue, wellbeing and parental self-efficacy in mothers of children with an Autism Spectrum Disorder. Autism, 17, 465-480.

Hardan, A. Y., Gengoux, G. W., Berquist, K. L., Libove, R. A., Ardel, C. M., Phillips, J…Minjarez, M. B. (2015), A randomized controlled trial of Pivotal Response Treatment Group for parents of children with autism. Journal of Child Psychology and Psychiatry, 56, 884-892. doi: 10.1111/jcpp.12354

Hoffman, C. D., Sweeney, D. P., Hodge, D., Lopez-Wagner, M. C., & Looney, L. (2009)
Parenting stress and closeness: Mothers of typically developing children and mothers of children with autism. Focus on Autism and Other Developmental Disabilities, 24, 178-187.

Kiami, S. R., & Goodgold, S. (2017). Support Needs and Coping Strategies as

Predictors of Stress Level among Mothers of Children with Autism Spectrum Disorder. Autism Research and Treatment Volume 2017, Article ID 8685950, https://doi.org/10.1155/2017/8685950

Myers, S. M., & Johnson, C. P. (2007). Management of children with autism spectrum disorders. Pediatrics, 120, 1162-1182. doi: 10.1542/peds.2007-2362

National Autism Center. (2015). Evidence-based practice and autism in the schools: An educator’s guide to providing appropriate interventions to students with autism spectrum disorder (2nd ed.). Randolph, MA: Author

Rogers, S. J., & Vismara, L. A. (2008). Evidence-based comprehensive treatments for early autism. Journal of Clinical Child & Adolescent Psychology, 37, 8-38.

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). A best practice guide to assessment and intervention for autism spectrum disorder in schools (2^nd Edition). London and Philadelphia: Jessica Kingsley Publishers.

Weiss, J. A., Cappadocia, M. C., MacMullin, J. A., Viecili, M., & Lunsky, Y. (2012). The impact of child problem behaviors of children with ASD on parent mental health: The mediating role of acceptance and empowerment. Autism, 16, 261-274. doi: 10.1177/1362361311422708

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).

First Impressions Matter: Facial Expressivity & Peer Acceptance in Autism

First Impressions Matter

Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder characterized by two core-defining features: impairments in (a) social communication and (b) restricted and repetitive behaviors or interests (American Psychiatric Association [APA], 2013). Social-communication deficits include difficulties making affective (emotional) contact with others. This includes deficits in nonverbal communicative behaviors used for social interaction which range from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to a lack of facial expression or gestures.

Many individuals on the autism spectrum have a “flat affect” or reduced facial display. “Flat affect” is a term used to describe a lack of emotional reactivity or expressivity. With a flat affect, expressive gestures are minimal, and there is little animation in facial expression or vocal inflection. Facial expressions are a form of non-verbal communication essential to interpersonal relationships. An inability to read facial and social cues makes “connecting” to others very difficult. Likewise, reduced expres­sivity may impede social discourse or provoke negative initial reactions to the person with autism. 

Research

A study published in the journal Autism examined the impact of facial expressivity on first impression formation and found that typically developing children formed their impressions of peers with ASD in as little as 30 seconds. Videos of children with ASD were initially rated for facial expressivity by adults who were unaware of the condition. Researchers further investigated the friendship ratings given by 44 typically developing children to the same videos. The children making friendship judgments were also unaware that they were rating children with autism. These ratings were compared to friendship ratings given to video clips of typically developing children. Adult participants rated children with autism as being less expressive than typically developing children. The 44 child participants also rated peers with autism lower than typically developing children on all aspects of friendship measures. Autistic children were rated not as trustworthy as the typically-developing children in the films. Moreover, study participants were less likely to say that they wanted to play with or be friends with the video subjects on the spectrum. These results suggest that impression formation is less positive towards autistic children than towards typically developing children even when exposure time is brief.

Implications

The findings of this study have important implications for intervention. First impressions make a difference: whether you are looking at facial expressions, gestures, or just general appearance, people are quick to form judgments about others. Autistic children experience more peer rejection and have fewer friendships than their typically developing peers. Limited facial expres­sivity may further remove children with autism from meaningful interactions and reciprocal emotional related­ness with others. Negative peer responses can be especially upsetting for more socially aware autistic children who may be strive but fail to form friendships. Further, distress often increases as children approach adolescence and the social milieu becomes more complex. 

Social relationship skills are critical to successful social, emotional, and cognitive development and to long-term outcomes for all students. An increase in the quality of social relationships can have a major influence on the social and academic development of both typically developing children and those with autism. Consequently, intervention needs to be focused on both groups in potential interactions rather than solely on the child with autism. This includes strategies designed to promote skill acquisition in building social relationships such as direct instruction, modeling, role-play, structured activities, social stories, formal social groups, pivotal response teaching, self-monitoring, and coaching. 

Students in general education can help the process of cohesion by serving as prosocial role models for autistic students. Teachers may also provide reinforcement for prosocial behavior or assign students in general education to work with students with autism in small groups on class projects together to promote positive interaction. Schools should make a dedicated effort to educate typically developing children about autism and associated symptoms. Educating children and increasing awareness will hopefully encourage a more thoughtful first impression formation process. Teaching social skills can have both preventive and remedial effects that can help reduce the risk for negative outcomes not only for children on the autism spectrum, but also for all children. 

Does facial expressivity count? How typically developing children respond initially to children with Autism. Steven D Stagg, Rachel Slavny, Charlotte Hand, Alice Cardoso and Pamela Smith. Autism published online 11 October 2013 DOI: 10.1177/1362361313492392 

The online version of this article can be found at: http://aut.sagepub.com/content/early/2013/10/10/1362361313492392

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).

Sensory Integration Therapy (SIT) and Autism: Research and Practice

Sensory Integration Therapy (SIT) and Autism Spectrum Disorder

Unusual sensory responses (i.e., sensory over-responsivity, sensory under-responsivity, and sensory seeking) are relatively common in children with autism spectrum disorder (ASD) and when present, may interfere with performance in many developmental and functional domains across home and school contexts. Sensory issues are now included in the DSM-5 ASD symptom criteria for restricted, repetitive patterns of behavior, interests, or activities (RRB), and include hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of the environment; such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects. It should also be noted that sensory processing disorder (SPD) is not recognized as a distinct diagnostic entity by the International Statistical Classification of Diseases and Related Health Problems (ICD-10), Individuals with Disabilities Education Act (IDEA), or the Diagnostic and Statistical Manual of Mental Disorders (DSM-5).

Research

The use of sensory integration therapy (SIT) for treatment of ASD has been both popular and controversial. Although SIT is often used individually or as a component of OT services for children with ASD, this intervention is best described as unsupported.  For example, a systematic review of intervention studies involving the use of SIT concluded that the current evidence-base does not support its use in the education and treatment of children with ASD. The National Autism Center’s National Standards Project also identifies SIT as an “Unestablished Treatment.”  Likewise, the National Professional Development Center on Autism Spectrum Disorders (NPDC) found “insufficient evidence” for sensory diets and sensory integration and fine motor intervention. Further, the American Academy of Pediatrics Section on Complementary and Integrative Medicine and Council on Children with Disabilities has issued a policy statement indicating that although OT with the use of sensory-based therapies may be acceptable as one of the components of a comprehensive treatment plan, parents and professionals should be informed that the research regarding the effectiveness of SIT is limited and inconclusive. They recommend that when utilized, interventions to address sensory related problems should be integrated at various levels into the student’s individualized educational program (IEP). The American Occupational Therapy Association also suggests that practitioners utilizing a SIT approach use clinical reasoning, existing evidence, and outcomes to create a comprehensive, individualized approach for each client, rather than employing isolated, specific sensory strategies. It is important to recognize that other OT treatments which focus on improving functional skills (e.g., activities of daily living) are essential for a range of neurodevelopmental disorders, thus children with ASD should have access to those interventions when indicated.

In summary, the current evidence-base does not support the use of SIT in the education and treatment of children with ASD. Although SIT has been researched and practiced for nearly 40 years, its underlying theory, accompanying diagnoses, and treatments lack scientific support. At this time there no convincing research to conclude that SIT and similar interventions promote improvement in behavioral or social functioning of individuals with autism. Consequently, professionals should present SIT as untested and encourage families who are considering this intervention to evaluate it carefully. There is a need for more research using scientifically robust, experimental methodologies with larger numbers of more diverse participants to determine whether SIT should be termed an evidence-based intervention. Future research should also investigate if SIT is more or less effective than other interventions designed to reduce or overcome sensory difficulties and whether specific individuals are more likely to benefit from SIT than other individuals.

 Practice

Despite the paucity of research demonstrating the effectiveness of SIT, best practice guidelines indicate that when needed, comprehensive educational programs for children with ASD should integrate an appropriately structured physical and sensory milieu in order to accommodate any unique sensory processing patterns. Students with ASD frequently require accommodations and modifications to prevent the negative effects that school and community environments can have on their sensory systems. While many schools may find it difficult to make major environmental changes, relatively simple adaptations and accommodations can be implemented to lessen the impact of sensory issues on the student with ASD. These include (a) reducing the amount of material posted on classroom wall for a student who has problems with excessive visual stimulation; (b) teaching the student to recognize the problem and ask in their mode of communication to leave the area; (c) providing a low distraction, visually clear area for work; (d) providing alternative seating and a quiet/calming space when students become overwhelmed; and (e) using headphones or similar device to minimize high noise levels. The accommodations and modifications needed to address sensory issues should be specified in the student’s individualized educational program (IEP). The collaboration of knowledgeable professionals (e.g., occupational therapists, speech/language therapists, physical therapists, adaptive physical educators) is necessary to provide guidance about supports and strategies for children whose sensory processing and/or motoric difficulties interfere with educational performance and access to the curriculum.

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.

👉 Click here to read a free preview of “A Best Practice Guide…”

  Key References and Further Reading

American Academy of Pediatrics, Section on Complementary and Integrative Medicine and Council on Children with Disabilities, Policy Statement (2012). Sensory integration therapies for children with developmental and behavioral disorders. Pediatrics, 1186-1189. doi: 10.1542/peds.2012-0876. Available from http://pediatrics.aappublications.org/content/early/2012/05/23/peds.2012-0876.full.pdf+html

American Occupational Therapy Association. (2010). The scope of occupational therapy services for individuals with an autism spectrum disorder across the life course. American Journal of Occupational Therapy, 64 (Suppl.), S125–S136.

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.) Washington, DC: Author.

Autism. 2015 19(2):133-48. doi: 10.1177/1362361313517762. Epub 2014 Jan 29. A systematic review of sensory processing interventions for children with autism spectrum disorders. Case- Smith J, Weaver LL, Fristad MA.

Brondino, N., Fusar-Poli, L., Rocchetti, M., Provenzani, U., Barale, F., & Politi, P. (2015). Complementary and Alternative Therapies for Autism Spectrum Disorder. Evidence-Based Complementary and Alternative Medicine. Article ID 258589, 31 pages http://dx.doi.org/10.1155/2015/258589

Chhatwani, S., & Fried, K. (2016). Research review: An intervention for sensory difficulties in children with. autism: a randomized trial. Science in Autism Treatment, 13(1), 26-27.

Cote, J., & Fried, K. (2016). Research review: Comparison of behavioral intervention and sensory-integration therapy in the treatment of challenging behavior. Science in Autism Treatment, 13(2), 11-13.

Dawson, G., & Watling, R. (2000). Interventions to facilitate auditory, visual, and motor integration in autism: A review of the evidence. Journal of Autism and Developmental Disorders, 30, 415-421.

Devlin, S., Healy, O., Leader, G., & Hughes, B. (2011). Comparison of behavioral intervention and sensory-integration therapy in the treatment of challenging behavior. Journal of Autism and Developmental Disorders, 41(10), 1303-1320.

Hodgetts, S., Magill-Evans, J., Misiaszek, J.E. (2011). Weighted Vests, Stereotyped Behaviors and Arousal in Children with Autism. Journal of Autism and Developmental Disorders, 41, 805–814 doi: 10.1007/s10803-010-1104-x

Lang, R., O’Reilly, M., Healy, O., Rispoli, M., Lydon, H., Streusand, W., … Giesbers, S. (2012). Sensory integration therapy for autism spectrum disorders: A systematic review. Research in Autism Spectrum Disorders, 6, 1004–1018. doi: 10.1016/j.rasd.2012.01.006

Leong H. M, Carter M, & Stephenson J (2015). Systematic review of sensory integration therapy for individuals with disabilities: Single case design studies. Research in Developmental Disabilities, 47, 334-351.

National Academy of Sciences (NAS), National Research Council, Division of Behavioral and Social Sciences and Education, Committee on Educational Interventions for Children with Autism. Educating Children with Autism. C Lord, JP McGee, eds. Washington, DC: National Academies Press; 2001.

National Autism Center (2015). Findings and conclusions: National standards project, phase 2. Randolph, MA: Author. Available from: http://www.nationalautismcenter.org/national-standards-project/phase-2/ http://www.autismdiagnostics.com/assets/Resources/NSP2.pdf

National Professional Development Center on Autism Spectrum Disorders. (2015). Evidence-Based Practices. Available from: http://autismpdc.fpg.unc.edu/evidence-based-practices

Pfeiffer, B., Koenig, K., Kinnealey, M., Shepperd, M., & Henderson, L. (2011). Effectiveness of sensory integration interventions in children with autism spectrum disorders: A pilot study. American Journal of Occupational Therapy, January/February 2011, 65(1), 76-85

Schaaf, R., Benevides, T., Mailloux, Z., Faller, P., Hunt, J., van Hooydonk, E., & Kelly, D. (2014). An intervention for sensory difficulties in children with autism: A randomized trial. Journal of Autism and Developmental Disorders, 44(7), 1493-1506. doi: 10.1007/s10803-013-1983-8. http://doi.org/10.1007/s10803-013-1983-8

Smith, T., Mruzek, D., & Mozingo, D. Sensory Integrative Therapy. In J. W. Jacobson & R. M. Foxx (Eds.) (2005)., Fads, dubious and improbable treatments for developmental disabilities. (pp. 331-350). Mahwah, NJ: Laurence Erlbaum Associates

Smith, T., Mruzek, D., & Mozingo, D. Sensory Integrative Therapy. In R. M. Foxx & J. A. Mulick (Eds.) (2016). Controversial Therapies for Autism and Intellectual Disabilities: Fads, Fashion and Science in Professional Practice. (pp. 247-269). New York, NY: Routledge.

Taylor, M., & Fried, K. (2016). Research synopses: Effectiveness of sensory integration interventions in children with autism spectrum disorders: A pilot study. Science in Autism Treatment, 13(4), 40-41.

Weitlauf, A.S., Sathe, N., McPheeters, M.L., Warren, Z.E.. Interventions targeting sensory challenges in autism spectrum disorder: A systematic review. Pediatrics. 2017;139(6):20170347

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

Williames, L. D., & Erdie-Lalana, C. R. (2009). Complementary, holistic, and integrative medicine: Sensory Integration. Pediatrics in Review, 30, e91-e93.

Wong, C., Odom, S. L., Hume, K. A., Cox, C. W., Fettig, A., Kurcharczyk…Schultz, T. R. (2015). Evidence-based practices for children, youth, and young adults with autism spectrum disorder: A comprehensive review. Journal of Autism and Developmental Disorders, 45, 1951-66. doi: 10.1007/s10803-014-2351-z

Wong, C., Odom, S. L., Hume, K. A., Cox, A. W., Fettig, A., Kucharczyk, S… Schultz, T. R. (2014). Evidence-based practices for children, youth, and young adults with Autism Spectrum Disorder. Chapel Hill: The University of North Carolina, Frank Porter Graham Child Development Institute, Autism Evidence-Based Practice Review Group. Available from: http://fpg.unc.edu/sites/fpg.unc.edu/files/resources/reports-and-policy-briefs/2014-EBP-Report.pdf

Zane, T. (2011). Putting a dead horse in a weighted vest: Another review of sensory integration training. Science in Autism Treatment, 8(1), 18-19.

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).

Can School Professionals Diagnose Autism?

Can School Professionals Diagnose Autism?

Since Congress added autism as a disability category to the Individuals with Disabilities Education Act (IDEA), the number of students receiving special education services in this category has increased over 900 percent nationally. The number of students receiving assistance under the special education category of autism over the past decade has increased from 1.5 percent to 9 percent of all identified disabilities. Autism now ranks fourth among all IDEA disability categories for students age 6-21. It’s critically important that school professionals understand the parameters of providing evidence-based assessment and identification practices for children and adolescents who may have an autism spectrum disorder (ASD).

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 the appropriate education of 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. 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.

This educational definition is considered sufficiently broad and operationally acceptable to accommodate both the clinical and educational descriptions of autism and related disorders. While the DSM-5 diagnostic criteria 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 made eligible for special educational services under the IDEA category of autism. Thus, 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.

Guidelines

Legal and special education experts recommend the following guidelines to help school districts meet the requirements 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 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.

Key References and Further Reading

Aiello, R., Ruble, L., & Esler, A. (2017). National Study of School Psychologists’ Use of Evidence-Based Assessment in Autism Spectrum Disorder. Journal of Applied School Psychology, 33(1), 67-88. DOI: 10.1080/15377903.2016.1236307

American Educational Research Association, American Psychological Association, & National Council on Measurement in Education. (2014). Standards for educational and psychological testing. Washington, DC: American Educational Research Association.

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.) Washington, DC: Author.

Campbell, J. M., Ruble, L. A., & Hammond, R. K. (2014). Comprehensive Developmental Approach Assessment Model. In L. A. Wilkinson (Ed.), Autism spectrum disorders in children and adolescents: Evidence-based assessment and intervention (pp. 51-73). Washington, DC: American Psychological Association.

Doepke, K. J., Banks, B. M., Mays, J. F., Toby, L. M., & Landau, S. (2014). Co-occurring emotional and behavior problems in children with Autism Spectrum Disorders. In L. Wilkinson (Ed.), Autism Spectrum Disorders in Children and Adolescence: Evidence-based Assessment and Intervention in Schools (pp. 125-148). Washington, DC: American Psychological Association.

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

Kratochwill, T. R. (2007). Preparing psychologists for evidence based school practice: Lessons learned and challenges ahead. American Psychologist, 62, 826-843.

National Association of School Psychologists. (2016). School Psychologists’ Involvement in Assessment. Bethesda, MD: Author.

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.

Ozonoff, S., Goodlin-Jones, B. L., & Solomon, M. (2005). Evidence-based assessment of autism spectrum disorders in children and adolescents. Journal of Clinical Child and Adolescent Psychology, 34, 523–540.

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.

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.

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

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 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).

Restricted & Repetitive Behavior (RRB) in Autism: Assessment & Future Directions

Restricted and Repetitive Behavior (RRB) in Autism

The DSM-5 criteria for autism spectrum disorder (ASD) include restricted and repetitive behavior (RRB) as a core diagnostic feature, together with the domain of social communication and social interaction deficits. RRBs include: (a) stereotyped or repetitive speech, motor movements, or use of objects; (b) excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (c) highly restricted, fixated interests that are abnormal in intensity or focus; and (d) hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment (American Psychiatric Association, 2013). Studies of RRBs have identified two sub-groups; one comprising repetitive sensory and motor behaviors (RSMB), such as repetitive hand or finger movements and rocking, and the other consisting of behaviors such as narrow interests, rigid routines, and rituals routines, which are collectively referred to as insistence on sameness (IS) (Bishop et al., 2013; Bishop, Richler, & Lord, 2006; Richler, Huerta, Bishop, & Lord, 2010).

Research indicates that repetitive behaviors may be among the earliest-emerging signs of autism (Wolff et al., 2014). There is also evidence to suggest that different types of RRB may be predictive of co-occurring mental health problems. For example, autistic children who demonstrate high levels of ritualistic and sameness behavior have been found to show more severe symptoms of anxiety and depression (Stratis & Lecavalier, 2013). Parents of children and teens also report that RRBs are one of the most challenging features of autism due to their significant interference with daily life. They can significantly impede learning and socialization by decreasing the likelihood of positive interactions with peers and adults. Given the importance of RRBs as a core feature of ASD, professionals should give increased attention to the assessment and presence of these behaviors, and their impact on the adaptability and psychological well-being of children and youth with ASD (Stratis & Lecavalier, 2013).

                                                                           Assessment

Rating scales and questionnaires are the most frequently used methods of measuring RRBs. For example, measures such as the Autism Spectrum Rating Scales (ASRS; Goldstein & Naglieri, 2010) and Social Responsiveness Scale (SRS-2; Constantino & Gruber, 2012) incorporate scales and treatment clusters assessing stereotypical behaviors, sensory sensitivity, and highly restricted interests characteristic of ASD. There are also specialized parent/caregiver questionnaires available that focus solely on restricted and repetitive behaviors and provide a more complete understanding of the impact of RRB factors on adaptive functioning. Of these questionnaires, the most commonly used are the Repetitive Behavior Scale-Revised (RBS-R; Bodfish, Symons, Parker, & Lewis, 2000) and the Repetitive Behavior Questionnaire-2 (RBQ-2; Leekam et al., 2007). Both cover a wide range of repetitive behaviors and were designed as a quantitative index of RRB, rather than relying exclusively on the above referenced broad-based ASD measures to assess RRBs. 

The RBS-R is a parent report of repetitive behaviors in children, adolescents, and adults with ASD. It consists of 43 items and includes the following subscales: Stereotyped Behavior, Self-Injurious Behavior, Compulsive Behavior, Ritualistic Behavior, Sameness Behavior, and Restricted Behavior. For each subscale, the number of items endorsed is computed as well as the severity score for the subscale. On the last question, respondents are asked to consider all of the behaviors described in the questionnaire, and provide a global severity rating.  The RBS-R has been reported to have adequate psychometric properties, and acceptable reliability and validity for each subscale (Bodfish et al., 2000; Boyd et al., 2010; Esbensen, Seltzer, Lam, & Bodfish, 2009; Gabriels, Cuccaro, Hill, Ivers, & Goldson, 2005; Lam & Aman, 2007).

The RBQ-2 is also a parent-completed 20-item questionnaire suitable for children (with or without autism) of all ages. Item responses fall into four groups which correspond to four specific areas: Repetitive Motor Movements, Rigidity/Adherence to Routine, Preoccupation with Restricted Interests, and Unusual Sensory Interests. Questionnaire scores can be added to provide a Total Repetitive Behaviors Score. As with previous research on RRBs, two clusters can be identified: RSMB, which corresponds to repetitive motor movements and unusual sensory interests, and IS, which corresponds to adherence to routine and restricted interests. The reliability and validity of the RBQ-2 has been supported with children and adolescents (Lidstone et al., 2014).

Future Directions

Restricted and repetitive behavior (RRB) is a core diagnostic feature of autism. Although these behaviors present a major barrier to learning and social adaptation, most of the research on ASD has focused on social and communication deficits, with less attention given to the RRB symptom domain (Boyd, McDonough, & Bodfish, 2012; Leekam, Prior, & Uljarevic, 2011). Further research and is needed to better understand their development, expression, assessment, and related clinical features (e.g., cognitive ability, adaptive functioning, comorbid disorders) (Stratis & Lecavalier, 2013). For example, it is important to understand how RRBs in typical development vary across time in order to compare atypical trajectories in children with ASD across intellectual and adaptive levels. Future research should also be directed to understanding the RRB subtypes and their relationship to comorbid symptoms such as anxiety and depression. 

Compared to the relatively large number of evidence-based, behavioral interventions for the social communication and interaction symptoms of ASD, RRBs are less likely to be included in intervention planning. There is a need to develop evidence-based interventions that are effective in treating the continuum of repetitive behaviors in order to provide support in this domain and improve RRBs before these behaviors become well-established (Leekam et al., 2011). In terms of assessment, measures such as the RBS-R and RBQ-2 should be included in a comprehensive developmental assessment to provide a more complete understanding of specific RRBs and their impact on adaptive functioning, as well as inform intervention selection (see Wilkinson for a description of assessment domains and recommended measures). Lastly, it is important to provide parents with education and training on how to effectively address these inflexible and repetitive patterns of behaviors that affect their everyday lives.

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.

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Key References and Further Reading

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.) Washington, DC: Author.

Bishop, S.L., Hus, V., Duncan, A., Huerta, M., Gotham, K., Pickles, A., Kreiger, A., Buja, A., Lund, S., Lord, C. (2013). Subcategories of restricted and repetitive behaviors in children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 43, 1287-97. doi:  10.1007/s10803-012-1671-0

Bodfish, J.W., Symons, F.J., Parker, D.E., & Lewis, M.H. (2000). Varieties of repetitive behavior in autism: Comparisons to mental retardation. Journal of Autism and Developmental Disorders, 30, 237–243.

Boyd, B. A., McDonough, S. G., & and Bodfish, J. W. (2012). Evidence-based behavioral interventions for repetitive behaviors in autism. Journal of Autism and Developmental Disorders, 42(6), 1236-1248. doi:10.1007/s10803-011-1284-z

Esbensen, A. J., Seltzer, M., Lam, K., & Bodfish, J. W. (2009). Age-related differences in restricted repetitive behaviors in autism spectrum disorders. Journal of Autism and Developmental Disorders, 39, 57–66. doi:10.1007/s10803-008-0599-x

Lam, K. S. L. & M. G. Aman (2007). The Repetitive Behavior Scale-Revised: Independent validation in individuals with autism spectrum disorders. Journal of Autism and Developmental Disorders, 37(5): 855-866.

Leekam, S, Tandos, J., McConachie, H., Meins, E., Parkinson, K., Wright, C…Le Couteur, A. (2007). Repetitive behaviours in typically developing 2-year-olds. Journal of Child Psychology and Psychiatry, 48, 11, 1131-1138.

Leekam, S. R., Prior, M. R., & Uljarevic, M. (2011). Restricted and repetitive behaviors in autism spectrum disorders: A review of research in the last decade. Psychological Bulletin, 137, 562–593. doi: 10.1037/a0023341

Stratis, E. A., & Lecavalier, L. (2013). Restricted and repetitive behaviors and psychiatric symptoms in youth with autism spectrum disorders. Research in Autism Spectrum Disorders, 7, 757–766.

Wolff, J.J., Botteron, K. N., Dager, S.R., Elison, J. T., Estes, A. M., Gu, H…Piven, J. (2014). Longitudinal patterns of repetitive behavior in toddlers with autism. Journal of Child Psychology and Psychiatry, 55, 945-53. doi: 10.1111/jcpp.12207

Lee A. Wilkinson, PhD, NCSP 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 best-selling 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).

© 2018 Lee A. Wilkinson, PhD