Caring for patients with ASD

Autism spectrum disorder (ASD) is a neurodevelopmental disorder in which there are demonstrated differences in social interactions and communication, as well as restricted and repetitive behaviours.1 It is often comorbid with attention-deficit hyperactivity disorder (ADHD), anxiety and learning disabilities.2 There is no single identified cause of ASD, nor is there a ‘cure.’ Nonpharmacologic interventions are the mainstay of management, to teach functional abilities and learning in different contexts (behaviour therapy, occupational therapy, speech and language therapy).3 Medications are not used for the core symptoms of ASD, but rather to help with associated symptoms (irritability, ADHD-like symptoms, comorbidities).3As medication experts, pharmacists are well positioned to ensure safe medication use, and provide relevant medication education, ongoing monitoring and communication with the patient and healthcare team. This article provides an overview of ASD, largely as it relates to children and youth, along with highlights of the pharmacist’s role on the care team and in communication with the patient/family.DIAGNOSISASD is a neurodevelopmental disorder, meaning that it impacts how the brain and neurological system function and develop. The American Psychiatric Association’s Diagnostic and Statistical Manual, fifth edition (DSM-5) provides standardized criteria for the diagnosis of ASD. To meet ASD diagnostic criteria, a child must have deficits in social communication and social interactions, along with restricted repetitive behaviours.1 The former can include difficulties in social interactions, verbal to nonverbal communication abilities, and adjusting behaviour in different contexts. Restricted repetitive patterns of behaviour can include repetitive motor movements, ritualized behaviours, difficulties with transitions, highly restricted interests, and sensitivity to sensory input (e.g., temperature, sounds, textures). In Canada, ASD diagnoses are made by physicians, nurse practitioners and psychologists. Symptoms of ASD are usually present in childhood and diagnostic screening can be conducted as early as 12 months of age.4,5PREVALENCEIn 2019, the Canadian Health Survey on Children and Youth (CHSCY) provided an overview of Canadian children and youth diagnosed with ASD.2 According to the findings, one in 50 (2%) Canadian children and youth are diagnosed with ASD. Furthermore, the review highlighted that males are four times more likely to receive a diagnosis than females, and about half (53.7%) of children and youth are diagnosed before the age of five years.2The CHSCY data also provided insights into the comorbid nature of ASD, highlighting that more than two-thirds of children and youth with ASD (68.7%) had another health condition, with ADHD, learning disability and anxiety the top three named. This translates to children and youth with ASD being three times more likely to also have another long-term health condition.2 Additionally, children and youth with ASD self-report less optimal general and mental health compared to those without an ASD diagnosis.2CAUSES AND RISK FACTORSThe true cause of ASD is still unknown, although both genetics and the environment play a role in brain development. ASD is not contagious or caused by vaccinations.6 Certain genetic diagnoses, such as fragile X, tuberous sclerosis, Down syndrome and Rett syndrome, have increased rates of co-occurring ASD.7 Siblings of children with ASD have a higher rate of ASD diagnosis compared to population norms.7 Research is ongoing in the area of etiology of ASD, but to date, there is no single unifying cause of ASD.THE AUTISM ‘SPECTRUM’In 2013, the American Psychiatric Association updated the diagnostic criteria for ASD in the DSM-V. It merged five previously separate diagnoses (autism, child disintegrative disorder, pervasive developmental disorder-not otherwise specified, Asperger’s syndrome and Rett syndrome) into one diagnosis called ASD.7 Now, the diagnosis of ASD falls on a spectrum, where those with a diagnosis demonstrate key characteristics. Thoughts have shifted from a linear spectrum (where ends are marked as ‘lower functioning’ and ‘higher functioning’) to a kaleidoscope or wheel of common ASD traits.8 This approach provides a more individualized understanding of the complexities and strengths for those with an ASD diagnosis.NONPHARMACOLOGIC INTERVENTIONSAn individualized approach to medical and behavioural interventions is key to supporting the optimal development of children and youth with ASD. The overall goal is to target the core features of ASD and their associated impact on development, behaviour and quality of life. For example, this can include decreasing unsafe behaviours, improving social functioning, building on communication and promoting ongoing learning. It can also include managing common comorbidities.1. Behavioural and developmental interventionsBehavioural interventions are the cornerstone of evidence-based treatment for children with ASD.3 Applied behaviour analysis helps to guide interventions and progress in teaching skills in varying environments. Interventions should be initiated as early as possible.3 Delivery models and access to publicly-funded services vary across the country. The Canadian Paediatric Society provides recommendations and resources for clinicians and families looking to explore current best practices with respect to behaviour interventions in ASD.32. Other coordinated allied health servicesIn addition to behaviour supports, children with ASD may require other services. For example, speech and language therapy can assess and provide recommendations and interventions for verbal, nonverbal and social communication skill-building. Occupational therapy can be implemented for fine motor or sensory challenges. Psychology services can provide assessments for learning skills, educational recommendations and specific comorbidities.PHARMACOLOGIC INTERVENTIONSMedications are another ‘tool’ available for specific circumstances in the ASD journey. Their efficacy, safety and adherence should be closely monitored. Medication changes and dose adjustments should be tailored to the child/youth’s needs. The main goals of medication use in ASD are to decrease unsafe behaviours and manage comorbidities.Currently, medications are not used to ‘treat’ the core symptoms of ASD and research is ongoing with respect to pharmacologic interventions for core symptoms of ASD.9 Specifically, medications do not have a role when it comes to management of repetitive behaviours. Restricted and repetitive behaviours (stereotypies) can be rhythmic, semivoluntary movements, such as hand flapping, body swaying, repetitive jumping or vocalizations. These behaviours may actually be soothing in stressful situations for autistic people. Of note, a study looking at the use of citalopram for repetitive behaviours found no difference when compared to placebo.10 At present, medications are only utilized when these behaviours are associated with an underlying diagnosis of anxiety.1. Medications for irritability and aggressionRisperidone and aripiprazole are the two atypical antipsychotics that are US Food and Drug Administration-approved for the indications of irritability of autism and to manage aggression, although they remain ‘off label’ in Canada.11 ‘Start low and go slow’ summarizes the typical approach to dosing with these agents. Maximum doses are 3 mg/day for risperidone and 15 mg/day for aripiprazole (for these indications), although a beneficial effect may be achieved without reaching maximum doses.12,13 Risperidone can be dosed once or twice daily, whereas the long half-life of aripiprazole supports once-daily dosing. As these are atypical antipsychotics, close monitoring for extrapyramidal side effects is necessary. The Canadian Alliance for Monitoring Effectiveness and Safety of Antipsychotics in Children (CAMESA) guidelines provide recommendations for side effect management and monitoring for metabolic side effects of these medications.142. Medications for ADHDADHD is highly comorbid with ASD; thus, the use of ADHD medications in children/youth with ASD is not uncommon.15 The Canadian ADHD Resource Alliance (CADDRA) provides national ADHD practice guidelines, with useful tools for both providers and families.16Stimulants, specifically methylphenidate and amphetamine-based agents, are the first-line option for management of ADHD symptoms.16,17 Multiple agents are available within both categories, with several formulation options. To ease administration and increase adherence, administration can often be facilitated by use of ‘opening and sprinkling,’ or dissolving techniques, switching to a chewable option, or splitting a tablet. Product monographs for current stimulants on the Canadian market provide further information, and CADDRA offers a table summarizing pharmacologic treatments to assist clinicians with decision-making.16Alpha agonists can also be utilized, in the form of either short-acting clonidine or long-acting guanfacine XR.16 As these agents can impact blood pressure, close monitoring is required at the start of treatment and with dose adjustment, along with planned cessation of treatment by gradual tapering to avoid rebound hypertension.Atomoxetine can also be used and is particularly beneficial if there is co-occurring tics or anxiety.17 It has a prescriptive mg/kg titration schedule and an onset of six to eight weeks (due to its noradrenaline reuptake inhibitor mechanism of action).163. Medications for anxiety, depression and sleepSelective serotonin reuptake inhibitors (SSRIs; e.g., sertraline, fluoxetine) are first-line medication options for managing anxiety and depression in children/youth with ASD.3 Side effect monitoring, gradual titration and onset of effect are similar to ‘typical’ use of SSRIs. Melatonin is supported by evidence for use in decreasing sleep onset time and increasing sleep duration.3 However, it should be used in conjunction with sleep hygiene routines for optimal effect.PHARMACIST’S ROLEResearch published in 2017 suggests that 48.5% of children and youth with ASD had received psychotropic medications, compared with 7.7% of matched cohorts with no ASD.18 This is an increase from the previously reported 35% of children and youth with ASD receiving psychotropic medications in 2010.19 With an estimated Canadian prevalence of ASD of 2% and the potential for almost half of children/youth with ASD to be on a psychotropic medication, pharmacists are uniquely positioned in the healthcare system to provide education and monitoring.Pharmacists’ training, knowledge, access to resources and accessibility means that patients can trust us to provide safe and quality care. Optimal use of medications in children and youth with ASD often requires ongoing communication between the pharmacist and the child/youth/family and medical team members. Specific roles for pharmacists in ASD management are outlined below.1. Providing detailed medication educationStarting a child or youth with ASD on a new medication can be daunting for caregivers. In today’s society, information is easily accessible online and through social media. However, it can be overwhelming to decipher the credibility of the information obtained and understand the details. And as system pressures increase, prescribers may not always have the time to discuss medications in the detail needed for each family. Understandably, presenting a new psychotropic prescription for a child/youth to the pharmacy can instill mixed emotions.Community pharmacists are uniquely positioned to navigate the patient-provider landscape. ‘What is this medication for?’ is a key initial question to help elicit the indication as well as the caregivers’ understanding of the medication’s use. During counselling, the pharmacist can also review dosing, especially in the context of starting at a low dose and increasing gradually. They can also review onset of effect, which can be key to helping the caregiver understand when the medication will start to work (e.g., immediately, within a few doses, or within a few weeks). Pharmacists can also review common side effects, make recommendations for managing them, and clarify which are short-term vs. long-term side effects. This is particularly important with antipsychotics and stimulants. For example, taking extra time to review morning dosing of stimulants is even more beneficial in the ASD population, knowing that sleep disturbances are highly comorbid.2. Intervening on drug–drug interactions and drug administration concernsPharmacists may be the continuous team member for a family, between visits to different prescribers and specialists. This means that pharmacists will see prescriptions from various specialties, often in much more detail than each specialty would on their own. For example, a child may be seeing a psychiatrist, neurologist and pediatrician, with prescriptions from all. It is the pharmacist’s responsibility to ensure new medications are assessed for safety, including drug–drug interactions. If significant interactions are identified, pharmacists are positioned to act on the patient’s behalf to resolve them before the new medication is started. Additionally, pharmacists can provide key information when it comes to medication administration. Sometimes tablets can be split, cut, crushed, dissolved, or mixed in applesauce or pudding to ease administration. Recommendations to families on how best to administer a new medication can be pivotal in ensuring a successful medication trial.3. Modifying communication strategies to meet the needs of those with ASDAs ASD can vary in clinical presentation, the strategies that work for one child/youth with ASD may not work for another. Pharmacists need to assess if their communication method requires modification in order to better meet the needs of the patient or family; practice guidelines detail some recommended communication strategies and those to avoid.20SUMMARYPublished literature suggests an increase in ASD diagnoses in Canada. Medications—specifically psychotropics—are sometimes used as part of ASD management. As medication experts, pharmacists can play a key role as a liaison between the healthcare team and the patient/caregiver. They can utilize their knowledge and adapt communication in a way to meet the patient’s needs.Tamara Milicevic (TMilicevic@hollandbloorview.ca) is a pharmacist with many years of experience at the psychopharmacology clinic at Holland Bloorview Kids Rehabilitation Hospital in Toronto, ON, where the goal is medication management for children and youth with neurodevelopmental diagnoses, particularly ASD. She has contributed to clinical education of students on clinical placement and through the Leslie Dan Faculty of Pharmacy, University of Toronto. Tamara is currently the clinical operations manager for the Extensive Needs Service, an outpatient program at Holland Bloorview that serves children and families with complex needs, including those with neurodevelopmental and mental health diagnoses.References:American Psychiatric Association. Diagnostic and statistical manual of mental disorders. 5th ed. Arlington, VA: American Psychiatric Association; 2013.Government of Canada. Autism spectrum disorder: highlights from the 2019 Canadian health survey on children and youth. February 2022. (accessed November 3, 2024).Canadian Paediatric Society. Post-diagnostic management and follow-up care for autism spectrum disorder. Paediatr Child Health 2019;24(7):461-8.Government of Canada. Autism: for professionals. November 2024. (accessed November 3, 2024).Canadian Paediatric Society. Early detection for autism spectrum disorder in young children. Paediatr Child Health 2019;24(7):424-32.Government of Canada. Causes of autism spectrum disorder. October 2020. (accessed November 3, 2024).Hodges H, Fealko C, Soares N. Autism spectrum disorder: definition, epidemiology, causes and clinical evaluation. Transl Pediatr 2020;9(Suppl 1):S55-65.Autism Speaks Canada. Autistic characteristics across the lifespan. (accessed November 3, 2024).Baribeau D, Vorstman J, Anagnostou E. Novel treatments in autism spectrum disorder. Curr Opin Psychiatry 2022;35(2):101-10.King BH, Hollander E, Sikich L, et al; STAART Psychopharmacology Network. Lack of efficacy of citalopram in children with autism spectrum disorders and high levels of repetitive behavior: citalopram ineffective in children with autism. Arch Gen Psychiatry 2009;66(6):583-90.Anagnostou E, Zwaigenbaum L, Szatmari P, et al. Autism spectrum disorder: advances in evidence-based practice. CMAJ 2014; 86(7):509-19.Risperidone. Pediatric & Neonatal Lexi-Drugs. UpToDate Lexidrug. UpToDate Inc. Available at https://online.lexi.com (accessed November 3, 2024).Aripiprazole. Pediatric & Neonatal Lexi-Drugs. UpToDate Lexidrug. UpToDate Inc. Available at https://online.lexi.com (accessed November 3, 2024).Pringsheim T, Panagiotopoulos C, Davidson J, et al; CAMESA guideline group. Evidence-based recommendations for monitoring safety of second generation antipsychotics in children and youth. J Can Acad Child Adolesc Psychiatry 2011;20:218-33. (accessed November 3, 2024).Leitner Y. The co-occurrence of autism and attention deficit hyperactivity disorder in children – what do we know? Front Hum Neurosci 2014;29(8):268.CADDRA. Guide to ADHD pharmacological treatments in Canada – October 2024. (accessed November 3, 2024).Mahajan R, Bernal MP, Panzer R, et al; Autism Speaks Autism Treatment Network Psychopharmacology Committee. Clinical practice pathways for evaluation and medication choice for attention-deficit/hyperactivity disorder symptoms in autism spectrum disorders. Pediatrics 2012;130(Suppl 2):S125-38.Madden JM, Lakoma MD, Lynch FL, et al. Psychotropic medication use among insured children with autism spectrum disorder. J Autism Dev Disord 2017;47(1):144-54.Rosenberg RE, Mandell DS, Farmer JE, et al. Psychotropic medication use among children with autism spectrum disorders enrolled in a national registry, 2007-2008. J Autism Dev Disord 2010;40(3):342-51.Kadi R, Gayed F, Kauzman P, et al. Autism spectrum disorder: practice guidelines for pharmacists. Can Pharm J 2024;157(2):58-65.

Caring for patients with ASD

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