Paediatrics & Child Health, 2019, 461–468

doi: 10.1093/pch/pxz121
Position Statement

Position Statement

Post-diagnostic management and follow-up care for autism

spectrum disorder
Angie Ip, Lonnie Zwaigenbaum, Jessica A. Brian
Canadian Paediatric Society, Autism Spectrum Disorder Guidelines Task Force, Ottawa, Ontario
Correspondence: Canadian Paediatric Society, 100–2305 St Laurent Blvd, Ottawa, Ontario K1G 4J8.
E-mail [email protected], website www.cps.ca

All Canadian Paediatric Society position statements and practice points are reviewed regularly and revised as needed.
Consult the Position Statements section of the CPS website www.cps.ca/en/documents for the most current version.
Retired statements are removed from the website.

Abstract
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 de-
velopmental 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

GENERAL PRINCIPLES AND GOALS progress, provide ongoing family education and support, and di-
OF CARE rect families to appropriate specialists, as needed (Table 1).
The overall goals of treatment are to target the core features
Children with autism spectrum disorder (ASD) require indi-
of ASD, along with associated developmental, behavioural,
vidualized medical, behavioural and developmental interven-
and learning challenges, and enhance quality of life for the en-
tions, and support from social care services, to maximize their
tire family. Specific treatment goals include improving social
full potential. Managing ASD requires coordinated care among
functioning, play, verbal and nonverbal communication, and
medical and mental health care professionals, therapists, edu-
functional adaptive skills, as well as reducing maladaptive be-
cators, and social and community service providers. Families
haviours, and promoting learning and cognition (1–6).
should be informed about different treatment options and ev-
idence for their effectiveness. They should also be referred to
supportive resources, especially when major life transitions ADDITIONAL ETIOLOGICAL TESTING
occur (e.g., starting or changing schools, the birth of a sibling, AND ASSESSMENT FOR ASSOCIATED
or a separation or divorce). MEDICAL CONDITIONS
Paediatricians, family physicians, and other primary care pro- After an ASD diagnosis has been confirmed, paediatric health
viders typically manage or make referrals for coexisting medical and care providers may order additional etiological testing or as-
psychiatric conditions in children with ASD. They should also reg- sessments for associated medical conditions (3). Investigations
ularly monitor and evaluate the child’s health and developmental are often ordered during the ASD diagnostic assessment, and

Received: January 8, 2019; Accepted: March 27, 2019

© Canadian Paediatric Society 2019. Published by Oxford University Press on behalf of the Canadian Paediatric Society. All rights reserved. 461
For permissions, please e-mail: [email protected]
462 Paediatrics & Child Health, 2019, Vol. 24, No. 7

Table 1. Checklist of approaches to post-diagnostic management of ASD

1. Etiological testing for associated medical conditions

□ Physical and neurological exam
□ Hearing assessment (with formal audiology assessment, if indicated)
□ Vision assessment
□ Dental assessment
□ Genetic testing, if indicated (e.g., chromosomal microarray)
□ Metabolic testing, if indicated
2. Assessment and management of co-morbid conditions. Refer to specialists when appropriate.
□ Gastrointestinal conditions
□ Nutrition
□ Sleep
□ Anxiety, depression, and other mood and psychiatric disorders
□ ADHD
□ Other child-specific conditions
3. Other assessments and therapies that address ASD-associated functional challenges
□ Speech-language therapy
□ Psycho-educational assessment
□ Occupational therapy
□ Physical therapy
□ Individualized educational supports
4. Behavioural and developmental interventions for core and associated features of ASD. Refer to specialists when
appropriate.
□ Become familiar with available community programs
□ Provide information about essential components and effectiveness of treatment interventions and programs
□ Facilitate enrolment into behavioural and developmental intervention programs (therapist-delivered or parent-mediated
approaches)
5. Management of challenging behaviours
□ Offer anticipatory guidance on safety issues (e.g., wandering, bolting, vulnerability to bullying or abuse)
□ Identify and assess target behaviours
□ Assess existing and available supports including behavioural and developmental interventions described above
□ Offer first- or second-line treatment, as appropriate
□ Refer for parent training
6. CAM approaches
□ Become familiar with CAM therapies
□ Inquire and provide guidance about using CAM therapies
7. Family and other support interventions
□ Provide parents with educational resources about ASD and local community supports
□ Provide information about in-home supports and interventions and help with securing respite care and social assistance
□ Inquire about family and sibling support and parental physical and mental health issues and unmet needs, and refer
appropriately
□ Assist with application for the Disability Tax Credit, and provide information regarding opening a Registered Disability Sav-
ings Plan
□ Advocate for local services and education programs
□ Obtain and share information, with parental consent, with schools, program staff, and health and social service personnel
(especially during major transition periods)

ADHD Attention-deficit hyperactivity disorder; ASD Autism spectrum disorder; CAM Complementary and alternative medicine.
Paediatrics & Child Health, 2019, Vol. 24, No. 7 463

it is important that paediatric care providers confirm and fol- 80% of children with ASD. Sleep problems negatively impact
low-up on pending investigations, and initiate additional ones, daytime behaviours and quality of life for both child and family
as needed. For more information on medical investigations, see (10). Consider counselling to improve sleep hygiene and rein-
the companion statement, Standards of Diagnostic Assessment force behavioural techniques (possibly in collaboration with a
for ASD, published in this issue. behavioural therapist, and possibly combined with melatonin
therapy). Counsel families to avoid using screen devices, which
SURVEILLANCE AND FOLLOW-UP CARE can disrupt sleep patterns, 1 hour before bedtime.
FOR CO-MORBIDITIES
Anxiety
Children with ASD have greater health care service needs Up to one-half of children with ASD also experience an anxiety
than their typically developing peers, but often face barriers disorder or phobia, conditions which may contribute to aggres-
to accessing care (7). Children with ASD may have or develop sive or self-injurious behaviours (7,10). Children with ASD who
co-morbid conditions and should be monitored routinely. Be are verbal, and whose cognitive abilities are at an 8-year-old’s
mindful that children with communication difficulties, such as level or greater, may benefit from group or individual cognitive
children with ASD, may not present with common signs and behavioural therapy (CBT) sessions (7,10). Modified CBT ap-
symptoms (3). Additional online resources for follow-up care proaches may be appropriate for some younger children.
for co-morbidites are listed at the end of this statement.
Attention-deficit hyperactivity disorder (ADHD)
Dental In 30% to 53% of children with ASD, ADHD is a co-occurring
Children with ASD should have regular, complete dental check- condition. Many young children with ADHD are overtly in-
ups. However, sensory sensitivities, anxiety, language impair- attentive, hyperactive, or impulsive. With or without ADHD,
ments or other associated challenges, may require a modified ‘bolting’ (suddenly running away from caregivers), and wan-
approach to routine care, or referral to a hospital-based dental dering in children with ASD, can pose further safety concerns
service. In some jurisdictions, public health units offer special- (10). For more on co-morbid ADHD, see the CPS position
ized in-home or school-based dental screening programs for statement ADHD in children and youth: Part 3; Assessment
children with ASD. Helpful resources are available for com- and treatment with co-morbid ASD, ID or prematurity.
munity dentists caring for children with ASD (8,9).
Depression
Gastroenterology If depression co-occurs with ASD, it is generally in older children
The prevalence of gastrointestinal disorders is higher in children as they become more socially aware. Children with ASD may
with ASD than the general population (3,4). Gastrointestinal be bullied or find it difficult to fit in socially or to establish and
symptoms may relate to constipation, unusual feeding be- maintain relationships (7,10). Counselling with anticipatory
haviours, restrictive diets and challenges with toilet training. guidance, including referral to community support services or re-
Specific workup for gastroesophageal reflux disease (GERD) ferring a child for psychological intervention, can be helpful.
or celiac disease should be considered, when medically indi-
cated. Managing constipation, GERD, chronic abdominal pain,
and diarrhea should be the same as for children without ASD. OTHER ASSESSMENTS AND THERAPIES
Treating gastrointestinal disturbances may improve abnormal TO ADDRESS ASD-ASSOCIATED
sleep and daytime behaviours (4). CHALLENGES
Alongside behavioural and developmental therapies, children
Nutrition
with ASD often need other supportive services. Paediatric care
Nutrition can be challenging because some children with ASD
providers can assist families by coordinating appropriate assess-
have very restricted diets, leading to deficiencies (in iron, for ex-
ments and care.
ample) and maladaptive mealtime behaviours. Consider nutri-
tion counselling and referral to a dietitian, as well as behavioural • Speech-language therapy may be required to improve verbal,
interventions to target specific feeding problems. A behavioural nonverbal, and social communication skills. A speech-language
therapist, occupational therapist, speech-language pathologist, pathologist can offer alternative and augmentative communica-
or community feeding team may all be helpful resources. tion aids, such as picture-based communication systems, signs
and gestures, or specialized devices and software, to children
Sleep who are nonverbal or whose language skills are impaired.
Sleep problems, such as late onset, frequent night and early • A psychologist can perform a psychological assessment to
morning waking, and decreased sleep duration, affect 50% to evaluate for cognitive, adaptive, and learning skills as well as
464 Paediatrics & Child Health, 2019, Vol. 24, No. 7

co-morbid conditions (such as anxiety, ADHD). These find- evidence of improvement in adaptive skills, IQ, and recep-
ings may help with treatment planning and supporting spe- tive and expressive language (14,17).
cific needs. • Parent-mediated interventions are effective in helping
• Occupational therapy addresses functional challenges in the parents to be more responsive and engaged with helping chil-
activities of daily living, including specific interventions to dren to acquire communication skills or manage challenging
improve fine motor or sensory processing impairments. An behaviours. Reported outcomes include improved parent–
occupational therapist can help children acquire self-care child interactions, increased parental knowledge and skill
and play skills. levels when teaching social communication and managing
• Physiotherapy can strengthen gross motor skills and im- behaviour, gains in children’s communication skills, and re-
prove endurance, strength, balance, coordination, and gait. duced autism-related symptom severity (20,22).
• A child and adolescent psychiatrist should be consulted to • Social skills training has been shown to improve social be-
assess and help manage any major psychiatric co-morbidity. haviour in children aged 7 to 12 years who have average or
above average intelligence (23).
• Cognitive behavioural therapy can be used effectively to
BEHAVIOURAL AND DEVELOPMENTAL treat anxiety disorders in children with ASD who are verbal
INTERVENTIONS FOR ASD (7,10,23).
One constant guiding principle is that behavioural interven- • One systematic review reported significant positive effects
tions for children with or at risk for ASD should be initiated as on parent–child interactions, regardless of the intervention
early as possible, ideally even before a diagnosis is confirmed models studied (i.e., behavioural, social-communication fo-
(11,12). Because children with ASD experience varying de- cused, or multicomponent developmental) (25).
grees of impairment in social and behavioural functioning, However, it is still not known which specific interventions
there is no universal treatment approach (13,14). Also, service or approaches are most likely to be effective for an individual
delivery models vary greatly across Canada. Paediatricians and child, based on age and developmental stage, specific strengths
other primary care providers should become familiar with serv- and challenges, and family needs. The choice of intervention
ices and programs in their communities, and be prepared to or program may depend on availability, proximity, and cost
discuss wait times for publicly funded services and other nav- (25,26).
igational issues with parents and caregivers. Countless ASD-targeted interventions and approaches exist
Behavioural interventions have emerged as the main evi- in the literature under many different names, and they often
dence-based treatment for children with ASD. These inter- overlap in practice. Families commonly use a combination of
ventions are mostly based on the science of applied behaviour interventions. Primary care providers could consider the Ontario
analysis (ABA) and use systematic learning principles to teach Association for Behaviour Analysis (ONTABA’s) 2017 report
skills in different learning environments (13,15–18). Current entitled Evidence-based Practices for Individuals with Autism
evidence supports the integration of ABA-based models with Spectrum Disorder: Recommendations for caregivers, practi-
approaches that are informed by developmental theory, partic- tioners, and policy makers (16), as a starting point. The report
ularly with very young children (4,19). For example, the under- provides tabulated information on 30 evidence-based or emerging
standing that affective engagement plays an important role in ASD interventions, based on targeted domains (Table 12) and
developing social relationships, informs models that foster posi- age group (Table 13). Definitions of intervention methods and
tive affective exchanges between child and therapist or caregiver domains appear in Appendices D and E, respectively.
(12). Naturalistic developmental behavioural interventions Significant positive features of effective interventions or
blend behavioural and developmental treatment approaches, programs are listed below (4,13–15):
and integrating them into daily activities is recommended for
• Teachers and therapists are trained and experienced, and
preschoolers (14,19).
work in supportive environments (e.g., classes with appro-
A comprehensive review of behavioural interventions for ASD
priate child-to-educator ratios).
is beyond the scope of this position statement. Within the last
• Teachers and therapists are supervised by professionals with
decade, however, there has been a significant increase in the quan-
extensive ASD expertise.
tity and quality of studies (i.e., with larger sample sizes, lower risk
• Interventions support ongoing child development, including
of bias, randomized controlled trials) to investigate interventions
social communication, language, emotional and behavioural
for ASD, especially in preschoolers, with at least one high-quality
regulation, cognitive, and adaptive skills.
study to determine effectiveness (16–27). Study findings have es-
• The child’s progress is monitored and evaluated regularly,
tablished the following intervention principles:
and adjustments are made accordingly.
• Early intensive behavioural interventions are commonly • Evidence-based protocols are followed closely, to ensure
used with young children (2 to 5 years of age), with some overall program effectiveness.
Paediatrics & Child Health, 2019, Vol. 24, No. 7 465

• Parents are actively involved, and learning opportunities are • Counsel families on strategies and interventions that can
incorporated into daily experiences. positively impact a child’s physical environments (e.g., struc-
tured, predictable routines) and social life (e.g., consistent
caregivers and approaches to behaviour management, and
MANAGING MALADAPTIVE BEHAVIOURS supportive, family-centred care for parents).
Community paediatricians and physicians are often the first-line • Use augmentative and alternative communication systems,
for helping families manage challenging behaviour, such as aggres- devices or software to help minimally verbal children com-
sion or self-injury (4,7). A trained behaviour specialist can be con- municate at home or in school.
sulted 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 spe- PHARMACOLOGICAL MANAGEMENT
cific behavioural interventions, an evidence-based parent training Co-occurring behavioural symptoms and mental health
program, and environmental modifications, or a combination of disorders are common in children with ASD. In most
approaches. Disruptive behaviours that are pervasive, severe, or cases, medication use should only be considered when
interfere substantively with a child’s learning, socialization, health nonpharmacological strategies have been exhausted, and they
or safety, or the quality of family life, may require using medication should always be used in combination with behavioural inter-
concurrently with nonpharmacologic interventions. ventions for children with ASD. Sometimes, starting a medi-
A general approach to managing maladaptive behaviours is cation while awaiting access to services may be necessary, but
offered below. such decisions must be considered carefully on a case-by-case
basis. Because children with ASD can experience more med-
1. Identify and assess target behaviours ication side effects than those without ASD, dosing should
“start low [often lower than published recommendations],
• Ask parents or other caregivers (e.g., relatives or a child care
and go slow”. Strict monitoring for adverse effects and drug
provider) about intensity, duration, and factors that appear
interactions is essential (28–31).
to worsen or improve the behaviour to be targeted. Ask
A comprehensive review of pharmacological options for man-
about the effect of a specific behaviour on the child’s daily
aging challenging behaviours and mental health disorders is be-
functioning.
yond the scope of this statement. However, a brief summary
• Factors that can increase risk for having challenging behav-
of some psycho-pharmacological medications currently in use
iours include:
is provided below, with recommended resources. Physicians
◦ Communication deficits, making it difficult for a child to
are encouraged to review current guidelines when prescribing
understand or express needs and wants
and monitoring psychotropic medications (28–31). For com-
◦ Coexisting medical disorders, which can cause pain or
plex cases, a child psychiatrist or developmental paediatrician
discomfort
should be consulted.
◦ Coexisting mental health problems or neurodevelop­
mental conditions
◦ Physical (e.g., lighting or noise levels) and social environ- Challenging behaviours
ments (e.g., home, child care, school) For treating irritability and aggression in children with
◦ Changes in daily routines or personal circumstances ASD who are 5 years of age and older, the Food and Drug
◦ Developmental changes (e.g., puberty) Administration (FDA) in the USA has only approved two
◦ Bullying and other forms of maltreatment medications: risperidone and aripiprazole. Close monitoring
for adverse effects, including weight gain, metabolic syndrome,
extrapyramidal symptoms (e.g., muscle stiffness, tremors), and
2. Offer first-line management strategies
drowsiness is required (30). Please also refer to the resources
• Ensure that families receive adequate education and con- below.
sistent support for behavioural strategies. Recommend
evidence-based parenting programs or classes, when they Associated behavioural and mental health disorders
are available in your community. Helpful online toolkits are Anxiety
also available (see below). Debilitating anxiety can be treated with a cautious trial of a se-
• Provide ongoing medical treatment for a co-occurring phys- lective serotonin reuptake inhibitor (SSRI), such as fluoxetine
ical disorder, and psychotherapeutic intervention for any or sertraline. Treatment-resistant children should be referred to
coexisting mental health problem. a tertiary-care specialist (28,29,31).
466 Paediatrics & Child Health, 2019, Vol. 24, No. 7

ADHD is needed before they can be recommended. Melatonin use for

First-line treatment is with methylphenidate or another stimu- sleep issues and regular physical exercise have both shown some
lant medication. Atomoxetine and alpha-2 adrenergic receptor positive effects for children with ASD (33–37).
agonists (e.g., clonidine or long-acting guanfacine) are appro- Therapies that are considered risky and ineffective include
priate alternatives, when combined with parent training in hyperbaric oxygen therapy, chelation, secretin, and the use of
ADHD behavioural management (28,29,31). certain herbal products. Antibiotics, antifungals, and facilitated
communication strategies are also considered to be ineffective
Depression for treating ASD (33–37).
Antidepressants, typically SSRIs, may be considered if depres- Parents of children with severe ASD symptoms may inquire
sive symptoms persist despite psychosocial interventions (28). about the use of cannabidiol oil. There is insufficient efficacy
or safety data at the present time to support the use of medical
Sleep disturbances cannabis to treat any condition in children (38), and the eth-
Melatonin, when combined with appropriate sleep hygiene and ical implications for paediatric care providers regarding its use
behavioural modification strategies, appears to be effective in in children with ASD are considerable (39).
reducing sleep onset times and increasing sleep duration, but Although some CAM therapies are considered safe with ap-
may not reduce nocturnal or early waking (2,32). Side effects propriate monitoring, many lack supporting evidence. Such
may include difficulty waking, daytime sleepiness, or enuresis. approaches include supplementing diet with vitamins B6, C, D,
and Mg, or omega-3 fatty acids, or dietary interventions, such
Recommended resources for pharmacological man- as gluten- or casein-free diets. Other tolerated though unproven
agement of ASD approaches include massage therapy, music and expressive ther-
• Canadian Alliance for Monitoring Effectiveness and Safety apies, therapeutic touch, therapeutic horse-back riding, other
of Antipsychotics in Children (CAMESA) guidelines: types of animal or pet therapy, yoga, and energy therapies (e.g.,
http://camesaguideline.org/information-for-doctors. healing touch, Reiki) (33–37).
• Canadian ADHD Resource Alliance (CADDRA) provides
ADHD practice guidelines for physicians: https://www.caddra.ca/.
• American Academy of Child and Adolescent Pscyhiatry (AACDAP) FAMILY SUPPORT
Autism Parents’ Medication Guide: https://www.aacap.org/ The primary health care provider has an important role in the
App_Themes/AACAP/Docs/resource_centers/autism/Autism_ long-term care management of children with ASD and their
Spectrum_Disorder_Parents_Medication_Guide.pdf. 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
COMPLEMENTARY AND ALTERNATIVE developing children (2–4). Health care providers should be fa-
MEDICINE (CAM) APPROACHES miliar with federal and provincial programs that provide finan-
An estimated 28% to 95% of families affected by ASD have used cial services for families, including the Disability Tax Credit and
CAM therapies, and roughly 25% have tried special diets to aug- the Registered Disability Savings Plan.
ment conventional therapies (33,34). Families are more likely Family physicians and other primary care providers should
to try CAM therapies when children are diagnosed at a younger regularly ask the parents of children with ASD about their
age or experience severe ASD symptoms, gastrointestinal issues, own self-care and physical and mental health needs, and pro-
or seizures (33). Clinicians must remain familiar with current vide appropriate care and referral to supportive services, as
evidence in the rapidly evolving field of CAM therapies, and be needed. As with the diagnostic process, be sensitive to the
ready to help families distinguish between proven and promising possibility that parents often experience distress related to
therapies and those that are unproven, potentially harmful, and their child’s developmental issues and the impacts this can
expensive. Unproven CAM alternatives divert time, emotional have on family life.
energy, and financial resources away from more effective con-
ventional treatments. At every office visit, clinicians should ask
parents, without judgment, about present or past use of CAMs, PROGNOSIS: FACTORS ASSOCIATED
and advise that current evidence for many CAM therapies is WITH POSITIVE OUTCOMES
based on low quality studies. CAM therapies should not replace Predicting treatment outcomes, especially in children younger
conventional ASD therapies. If families wish to try a CAM, care than 3 years of age, is difficult. However, factors associated with
providers should counsel testing only one treatment at a time, positive developmental and behavioural outcomes include
and closely monitor and record outcomes (33). And while early identification, timely access to behavioural interventions,
some CAM approaches are considered safe, additional research and higher cognitive abilities. Interventions should focus on
Paediatrics & Child Health, 2019, Vol. 24, No. 7 467

each child’s specific needs as they evolve, support parents and Potential Conflicts of Interest: Dr. Zwaigenbaum reports personal fees
families, and ensure that children with ASD can participate fully from Roche - Independent Data Monitoring Committee (iDMC), out-
in life at home, in school, and in the community (17). side 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
RECOMMENDED ONLINE RESOURCES the manuscript have been disclosed.

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CANADIAN PAEDIATRIC SOCIETY AUTISM SPECTRUM DISORDER GUIDELINES TASK FORCE

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