Position statement
Posted: Oct 24, 2019
Angie Ip, Lonnie Zwaigenbaum, Jessica A. Brian; Canadian Paediatric Society, Autism Spectrum Disorder Guidelines Task Force
Paediatr Child Health 2019 24(7):461–468.
Paediatricians and other primary care providers are well positioned to provide or coordinate ongoing medical and psychosocial care and support services for children with autism spectrum disorder (ASD). This statement provides recommendations and information on a range of interventions and resources, to help paediatric care providers optimize care for children with ASD and support their families. The management of ASD includes treating medical and psychiatric co-morbidities, behavioural and developmental interventions, and providing supportive social care services to enhance quality of life for affected children and families.
Keywords: Autism spectrum disorder; Behavioural interventions; Complementary and alternative medicine; Developmental interventions; Pharmacological management
Children with autism spectrum disorder (ASD) require individualized medical, behavioural and developmental interventions, and support from social care services, to maximize their full potential. Managing ASD requires coordinated care among medical and mental health care professionals, therapists, educators, and social and community service providers. Families should be informed about different treatment options and evidence for their effectiveness. They should also be referred to supportive resources, especially when major life transitions occur (e.g., starting or changing schools, the birth of a sibling, or a separation or divorce).
Paediatricians, family physicians, and other primary care providers typically manage or make referrals for coexisting medical and psychiatric conditions in children with ASD. They should also regularly monitor and evaluate the child’s health and developmental progress, provide ongoing family education and support, and direct families to appropriate specialists, as needed (Table 1).
The overall goals of treatment are to target the core features of ASD, along with associated developmental, behavioural, and learning challenges, and enhance quality of life for the entire family. Specific treatment goals include improving social functioning, play, verbal and nonverbal communication, and functional adaptive skills, as well as reducing maladaptive behaviours, and promoting learning and cognition [1]–[6].
After an ASD diagnosis has been confirmed, paediatric health care providers may order additional etiological testing or assessments for associated medical conditions [3]. Investigations are often ordered during the ASD diagnostic assessment, and it is important that paediatric care providers confirm and follow-up on pending investigations, and initiate additional ones, as needed. For more information on medical investigations, see the companion statement, Standards of Diagnostic Assessment for ASD, published in this issue.
Children with ASD have greater health care service needs than their typically developing peers, but often face barriers to accessing care [7]. Children with ASD may have or develop co-morbid conditions and should be monitored routinely. Be mindful that children with communication difficulties, such as children with ASD, may not present with common signs and symptoms [3]. Additional online resources for follow-up care for co-morbidites are listed at the end of this statement.
Children with ASD should have regular, complete dental checkups. However, sensory sensitivities, anxiety, language impairments or other associated challenges, may require a modified approach to routine care, or referral to a hospital-based dental service. In some jurisdictions, public health units offer specialized in-home or school-based dental screening programs for children with ASD. Helpful resources are available for community dentists caring for children with ASD [8][9].
The prevalence of gastrointestinal disorders is higher in children with ASD than the general population [3][4]. Gastrointestinal symptoms may relate to constipation, unusual feeding behaviours, restrictive diets and challenges with toilet training. Specific workup for gastroesophageal reflux disease (GERD) or celiac disease should be considered, when medically indicated. Managing constipation, GERD, chronic abdominal pain, and diarrhea should be the same as for children without ASD. Treating gastrointestinal disturbances may improve abnormal sleep and daytime behaviours [4].
Nutrition can be challenging because some children with ASD have very restricted diets, leading to deficiencies (in iron, for example) and maladaptive mealtime behaviours. Consider nutrition counselling and referral to a dietitian, as well as behavioural interventions to target specific feeding problems. A behavioural therapist, occupational therapist, speech-language pathologist, or community feeding team may all be helpful resources.
Sleep problems, such as late onset, frequent night and early morning waking, and decreased sleep duration, affect 50% to 80% of children with ASD. Sleep problems negatively impact daytime behaviours and quality of life for both child and family [10]. Consider counselling to improve sleep hygiene and reinforce behavioural techniques (possibly in collaboration with a behavioural therapist, and possibly combined with melatonin therapy). Counsel families to avoid using screen devices, which can disrupt sleep patterns, 1 hour before bedtime.
Up to one-half of children with ASD also experience an anxiety disorder or phobia, conditions which may contribute to aggressive or self-injurious behaviours [7][10]. Children with ASD who are verbal, and whose cognitive abilities are at an 8-year-old’s level or greater, may benefit from group or individual cognitive behavioural therapy (CBT) sessions [7][10]. Modified CBT approaches may be appropriate for some younger children.
In 30% to 53% of children with ASD, ADHD is a co-occurring condition. Many young children with ADHD are overtly inattentive, hyperactive, or impulsive. With or without ADHD, ‘bolting’ (suddenly running away from caregivers), and wandering in children with ASD, can pose further safety concerns [10]. For more on co-morbid ADHD, see the CPS position statement ADHD in children and youth: Part 3; Assessment and treatment with co-morbid ASD, ID or prematurity.
If depression co-occurs with ASD, it is generally in older children as they become more socially aware. Children with ASD may be bullied or find it difficult to fit in socially or to establish and maintain relationships [7][10]. Counselling with anticipatory guidance, including referral to community support services or referring a child for psychological intervention, can be helpful.
Alongside behavioural and developmental therapies, children with ASD often need other supportive services. Paediatric care providers can assist families by coordinating appropriate assessments and care.
One constant guiding principle is that behavioural interventions for children with or at risk for ASD should be initiated as early as possible, ideally even before a diagnosis is confirmed [11][12]. Because children with ASD experience varying degrees of impairment in social and behavioural functioning, there is no universal treatment approach [13][14]. Also, service delivery models vary greatly across Canada. Paediatricians and other primary care providers should become familiar with services and programs in their communities, and be prepared to discuss wait times for publicly funded services and other navigational issues with parents and caregivers.
Behavioural interventions have emerged as the main evidence-based treatment for children with ASD. These interventions are mostly based on the science of applied behaviour analysis (ABA) and use systematic learning principles to teach skills in different learning environments [13][15]–[18]. Current evidence supports the integration of ABA-based models with approaches that are informed by developmental theory, particularly with very young children [4][19]. For example, the understanding that affective engagement plays an important role in developing social relationships, informs models that foster positive affective exchanges between child and therapist or caregiver [12]. Naturalistic developmental behavioural interventions blend behavioural and developmental treatment approaches, and integrating them into daily activities is recommended for preschoolers [14][19].
A comprehensive review of behavioural interventions for ASD is beyond the scope of this position statement. Within the last decade, however, there has been a significant increase in the quantity and quality of studies (i.e., with larger sample sizes, lower risk of bias, randomized controlled trials) to investigate interventions for ASD, especially in preschoolers, with at least one high-quality study to determine effectiveness [16]–[27]. Study findings have established the following intervention principles:
However, it is still not known which specific interventions or approaches are most likely to be effective for an individual child, based on age and developmental stage, specific strengths and challenges, and family needs. The choice of intervention or program may depend on availability, proximity, and cost [25][26].
Countless ASD-targeted interventions and approaches exist in the literature under many different names, and they often overlap in practice. Families commonly use a combination of interventions. Primary care providers could consider the Ontario Association for Behaviour Analysis (ONTABA’s) 2017 report entitled Evidence-based Practices for Individuals with Autism Spectrum Disorder: Recommendations for caregivers, practitioners, and policy makers [16], as a starting point. The report provides tabulated information on 30 evidence-based or emerging ASD interventions, based on targeted domains (Table 12) and age group (Table 13). Definitions of intervention methods and domains appear in Appendices D and E, respectively.
Significant positive features of effective interventions or programs are listed below [4][13]–[15]:
Community paediatricians and physicians are often the first-line for helping families manage challenging behaviour, such as aggression or self-injury [4][7]. A trained behaviour specialist can be consulted to help identify reasons for disruptive behaviours (usually based on a functional behaviour assessment), which then inform first-line treatment planning. Treatment plans may include specific behavioural interventions, an evidence-based parent training program, and environmental modifications, or a combination of approaches. Disruptive behaviours that are pervasive, severe, or interfere substantively with a child’s learning, socialization, health or safety, or the quality of family life, may require using medication concurrently with nonpharmacologic interventions.
A general approach to managing maladaptive behaviours is offered below.
Co-occurring behavioural symptoms and mental health disorders are common in children with ASD. In most cases, medication use should only be considered when nonpharmacological strategies have been exhausted, and they should always be used in combination with behavioural interventions for children with ASD. Sometimes, starting a medication while awaiting access to services may be necessary, but such decisions must be considered carefully on a case-by-case basis. Because children with ASD can experience more medication side effects than those without ASD, dosing should “start low (often lower than published recommendations), and go slow”. Strict monitoring for adverse effects and drug interactions is essential [28]–[31].
A comprehensive review of pharmacological options for managing challenging behaviours and mental health disorders is beyond the scope of this statement. However, a brief summary of some psycho-pharmacological medications currently in use is provided below, with recommended resources. Physicians are encouraged to review current guidelines when prescribing and monitoring psychotropic medications [28]–[31]. For complex cases, a child psychiatrist or developmental paediatrician should be consulted.
For treating irritability and aggression in children with ASD who are 5 years of age and older, the Food and Drug Administration (FDA) in the USA has only approved two medications: risperidone and aripiprazole. Close monitoring for adverse effects, including weight gain, metabolic syndrome, extrapyramidal symptoms (e.g., muscle stiffness, tremors), and drowsiness is required [30]. Please also refer to the resources below.
Debilitating anxiety can be treated with a cautious trial of a selective serotonin reuptake inhibitor (SSRI), such as fluoxetine or sertraline. Treatment-resistant children should be referred to a tertiary-care specialist [28][29][31].
First-line treatment is with methylphenidate or another stimulant medication. Atomoxetine and alpha-2 adrenergic receptor agonists (e.g., clonidine or long-acting guanfacine) are appropriate alternatives, when combined with parent training in ADHD behavioural management [28][29][31].
Antidepressants, typically SSRIs, may be considered if depressive symptoms persist despite psychosocial interventions [28].
Melatonin, when combined with appropriate sleep hygiene and behavioural modification strategies, appears to be effective in reducing sleep onset times and increasing sleep duration, but may not reduce nocturnal or early waking [2][32]. Side effects may include difficulty waking, daytime sleepiness, or enuresis.
Canadian Alliance for Monitoring Effectiveness and Safety of Antipsychotics in Children (CAMESA) guidelines: http://camesaguideline.org/information-for-doctors.
Canadian ADHD Resource Alliance (CADDRA) provides ADHD practice guidelines for physicians: https://www.caddra.ca/.
American Academy of Child and Adolescent Pscyhiatry (AACDAP) Autism Parents’ Medication Guide: https://www.aacap.org/App_Themes/AACAP/Docs/resource_centers/autism/Autism_Spectrum_Disorder_Parents_Medication_Guide.pdf.
An estimated 28% to 95% of families affected by ASD have used CAM therapies, and roughly 25% have tried special diets to augment conventional therapies [33][34]. Families are more likely to try CAM therapies when children are diagnosed at a younger age or experience severe ASD symptoms, gastrointestinal issues, or seizures [33]. Clinicians must remain familiar with current evidence in the rapidly evolving field of CAM therapies, and be ready to help families distinguish between proven and promising therapies and those that are unproven, potentially harmful, and expensive. Unproven CAM alternatives divert time, emotional energy, and financial resources away from more effective conventional treatments. At every office visit, clinicians should ask parents, without judgment, about present or past use of CAMs, and advise that current evidence for many CAM therapies is based on low quality studies. CAM therapies should not replace conventional ASD therapies. If families wish to try a CAM, care providers should counsel testing only one treatment at a time, and closely monitor and record outcomes [33]. And while some CAM approaches are considered safe, additional research is needed before they can be recommended. Melatonin use for sleep issues and regular physical exercise have both shown some positive effects for children with ASD [33]–[37].
Therapies that are considered risky and ineffective include hyperbaric oxygen therapy, chelation, secretin, and the use of certain herbal products. Antibiotics, antifungals, and facilitated communication strategies are also considered to be ineffective for treating ASD [33]–[37].
Parents of children with severe ASD symptoms may inquire about the use of cannabidiol oil. There is insufficient efficacy or safety data at the present time to support the use of medical cannabis to treat any condition in children [38], and the ethical implications for paediatric care providers regarding its use in children with ASD are considerable [39].
Although some CAM therapies are considered safe with appropriate monitoring, many lack supporting evidence. Such approaches include supplementing diet with vitamins B6, C, D, and Mg, or omega-3 fatty acids, or dietary interventions, such as gluten- or casein-free diets. Other tolerated though unproven approaches include massage therapy, music and expressive therapies, therapeutic touch, therapeutic horse-back riding, other types of animal or pet therapy, yoga, and energy therapies (e.g., healing touch, Reiki) [33]–[37].
The primary health care provider has an important role in the long-term care management of children with ASD and their families, especially as developmental and other needs change over time. Many parents of children with ASD experience greater stress and financial hardship than parents of typically developing children [2]–[4]. Health care providers should be familiar with federal and provincial programs that provide financial services for families, including the Disability Tax Credit and the Registered Disability Savings Plan.
Family physicians and other primary care providers should regularly ask the parents of children with ASD about their own self-care and physical and mental health needs, and provide appropriate care and referral to supportive services, as needed. As with the diagnostic process, be sensitive to the possibility that parents often experience distress related to their child’s developmental issues and the impacts this can have on family life.
Predicting treatment outcomes, especially in children younger than 3 years of age, is difficult. However, factors associated with positive developmental and behavioural outcomes include early identification, timely access to behavioural interventions, and higher cognitive abilities. Interventions should focus on each child’s specific needs as they evolve, support parents and families, and ensure that children with ASD can participate fully in life at home, in school, and in the community [17].
For primary care providers and families learning to access ASD intervention services in their communities, the following resources are a first step:
Information about provincial/territorial and national ASD organizations, with education and support groups for children with ASD and their families:
Other resources for health care professionals and families:
Funding: A systematic review funded by the Public Health Agency of Canada informed the development of the position statements.
Potential Conflicts of Interest: Dr. Zwaigenbaum reports personal fees from Roche - Independent Data Monitoring Committee (iDMC), outside the submitted work. There are no other disclosures. All authors have submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest. Conflicts that the editors consider relevant to the content of the manuscript have been disclosed.
Members: Mark Awuku MD (CPS Community Paediatrics Section), Jessica Brian PhD (co-Chair), Susan Cosgrove, Pam Green NP, Elizabeth Grier MD (College of Family Physicians of Canada), Sophia Hrycko MD (Canadian Academy of Child and Adolescent Psychiatry), Angie Ip MD, James Irvine MD, Anne Kawamura MD (CPS Developmental Paediatrics Section), Sheila Laredo MD PhD (Canadian Autism Spectrum Disorders Alliance), William Mahoney MD (CPS Mental Health Section), Patricia Parkin MD, Melanie Penner MD, Mandy Schwartz MD, Isabel Smith PhD, Lonnie Zwaigenbaum MD (co-Chair)
Principal authors: Angie Ip MD, Lonnie Zwaigenbaum MD, Jessica A. Brian PhD
Disclaimer: The recommendations in this position statement do not indicate an exclusive course of treatment or procedure to be followed. Variations, taking into account individual circumstances, may be appropriate. Internet addresses are current at time of publication.
Last updated: Feb 7, 2024