Psychotropic Medication Use Among Adolescents and Young Adults with an Autism Spectrum Disorder: Parent Views About Medication Use and Healthcare Services

Abstract

Objective:

Psychotropic medications are frequently used to treat mental health and behavioral issues in adolescents and adults with an autism spectrum disorder (ASD). Although parents of individuals with ASD frequently take on medication management for their child, there is limited literature on parent perspectives of their child's medication use or their views about the healthcare services they receive, particularly in adulthood. The current study examined and compared parents of adolescents and of young adults with ASD regarding their child's psychotropic medication use and their views about healthcare services.

Methods:

One hundred parents of adolescents and young adults with ASD (ages 12–30 years) completed an online survey about their experience with their child's healthcare services and medication use.

Results:

Parents of young adults were less likely to use nonpharmacological services before using a psychotropic medication than were parents of adolescents. Parents of young adults were also less likely to believe that their prescribing healthcare provider had adequate expertise in ASD, and were less satisfied with how their prescriber monitored their child's medication use.

Conclusion:

Findings highlight the need to build capacity among healthcare providers supporting individuals with ASD as they transition into adulthood. There is also a need for improved medication monitoring and increased awareness of the different mental health challenges that individuals with ASD encounter as they age.

Introduction

Individuals with an autism spectrum disorder (ASD) are frequently prescribed psychotropic medications (Rosenberg et al. 2010; Coury et al. 2012; Logan et al. 2012; Memari et al. 2012; Schubart et al. 2013; Spencer et al. 2013; Hsia et al. 2014), with >75% taking psychotropic drugs by the time they reach adulthood (Esbensen et al. 2009; Spencer et al. 2013). Despite their widespread use, literature on psychotropic medications in adolescents and young adults with ASD remains limited. Of the few studies conducted to date, most have examined medication rates or associated demographic and clinical variables (Esbensen et al. 2009; Coury et al. 2012; Lake et al. 2012; Spencer et al. 2013; Lake, Weiss, Dergal & Lunsky 2014), but not the experience of using medication, such as knowledge about or satisfaction with medication monitoring.

Associated mental health issues, and deficits in social, communicative, and cognitive functioning often impede individuals with ASD from managing their own healthcare (Bruder et al. 2012). Consequently, the responsibility for coordinating and managing healthcare and service provision for their adolescent or adult child, including medication use, frequently falls on parents or other caregivers (Howlin et al. 2004; Carbone et al. 2010; Levy and Perry 2011; Bruder et al. 2012). Despite this, the little we know about parent perspectives regarding their child's healthcare and medication use, with most of our knowledge coming from studies of children. Generally, this literature suggests that parents are dissatisfied with the healthcare services that their child receives (Harrington et al. 2006; Liptak et al. 2006; Kogan et al. 2008; Mitchell and Hauser-Cram 2008; Carbone et al. 2010; Mackintosh et al. 2012).

We know even less about parent perspectives as individuals with ASD enter adulthood, when the needs of patients and families may change (Graetz 2010). This transition can be particularly challenging for individuals with ASD, not only in terms of physiological changes, but also because of possible changes in residence, education, and employment. Additionally, young adults may encounter significant changes in service eligibility or accessibility, and some adults may no longer be eligible or have access to funded nonpharmacological services or supports. For example, adolescents access services through children's services and the school system, whereas young adults receive services within the adult system. Further, young adults must move from the pediatric to the adult healthcare system, where access to healthcare professionals and trainees who have the capacity and expertise to care for individuals with ASD is sparse (Bruder et al. 2012; Cheak-Zamora et al. 2013; Marrus et al. 2014). Lastly, medication efficacy, tolerability, and the reason(s) for prescribing medication or the individual's psychiatric presentation, may also differ between the two groups. For these reasons, there is a clear need to better understand the unique experience of medication use among transitioning youth with ASD, and how these experiences differ from those of younger adolescents.

In the only study to examine parent perspectives on psychotropic medication use among adolescents and adults with ASD, we identified a number of key concerns related to medication use and prescribing healthcare providers (Lake, Milovanov, Sawyer & Lunsky in press). Specifically, our qualitative study found that parents voiced concerns about side effects and medication efficacy, as well as concerns related to the low frequency and lack of standardization of medication monitoring. Parents also commented on the need for prescribers with expertise in ASD, and for a better integrated system with enhanced communication among healthcare professionals, and an interdisciplinary approach to treatment. Although findings represent an important first step on this topic, quantitative research is needed to follow up this qualitative, exploratory study more systematically, and with a larger cohort of individuals (Goering and Streiner 1996).

The current study adds to the limited literature on parent perspectives of psychotropic medication use among adolescents and young adults with ASD, and expands previous qualitative work using a larger, more diverse sample, divided into two subgroups: One of adolescents and the other of young adults with ASD. Our specific study objectives include: 1) To describe and compare the number and type of medications prescribed in the two groups; and 2) to describe and compare parents' perspectives of their adolescent or young adult child's medication use (i.e., reason for medication prescription, comfort with medication use, medication side effects, and medication efficacy) and parent perspectives regarding healthcare services received (i.e., expertise issues, use of previous services prior to medication use, satisfaction with medication monitoring, and availability and accessibility of nonpharmacological services).

Methods

The analyses reported here are part of a larger project examining health service utilization patterns among individuals with ASD. Participants were recruited across Ontario through flyers, web sites, and announcements targeted at relevant support groups, recreational programs, community agencies, and schools. Efforts were made to reach families living in all regions of the province, including remote and rural settings where individuals might be marginalized economically or geographically. Parents from this larger project who noted that their child had been prescribed psychotropic medication (n=363) were invited to participate in a follow-up survey. Parents were deemed eligible if they had a child with ASD between 12 and 30 years of age who was currently prescribed at least one psychotropic medication. Of the 363 parents contacted, 113 parents completed the follow-up survey. Two of these parents had a child >12 years of age, and 11 did not have a child who met the recommended Social Communication Questionnaire (SCQ) (Rutter et al. 2003) research cutoff score of ≥12 (Brooks and Benson 2013). As a result, 13 parents were excluded from our analysis, resulting in a final sample size of 100 participants. Respondents were not paid to complete the survey, and participants understood that their responses would be linked to their longitudinal data. Individuals with ASD were classified as adolescents if they were between 12 and 18 years of age, and young adults if they were between 19 and 30 years.

Participants

Adolescents with ASD (n=55) had a mean age of 15.45 years (SD=1.68), and young adults (n=45) a mean age of 22.2 years (SD=3.17). Parents had a mean age of 45.74 years (SD=6.13), and 52.3 years (SD=4.78), respectively. No significant differences were identified among adolescents and young adults in terms of mean SCQ score. More than 75% of adolescents and young adults with ASD were male, most were Caucasian, and almost all were living with family (Table 1). No significant group differences were observed in terms of gender ratios, intellectual disability (ID) status, rates of medical or psychiatric comorbidity, residence, or ethnicity. Compared with young adults, more adolescents were engaged in structured daytime activities, likely because they were still attending mandatory schooling.

Table 1.

Descriptive Statistics of Sample (N=100)

Parameter	Adolescents (12–18) (n=55) %	Young adults (19–30) (n=45) %	p value
Gender (male)	83.6	75.6	χ ²(1)=1.01, p=0.32
Intellectual disability (yes)	54.0	50.0	χ ²(1)=0.15, p=0.70
Caucasian	87.3	82.2	χ ²(1)=0.50, p=0.48
Living with family	100.0	92.5	χ ²(1)=4.03, p=0.05
Structured activity	98.2	75.6	χ ²(1)=12.00, p=0.001^***
Medical comorbidity	33.0	33.0	χ ²(1)=0.004, p=0.95
Psychiatric comorbidity	63.3	73.6	χ ²(1)=1.07, p=0.30

***

p≤0.001.

Materials/Procedure

Background and sociodemographic characteristics, in addition to information about the child's medication use and experience with prescribing healthcare providers, were all obtained via an online survey. This included information on medication and side effects, parent comfort regarding their child's medication use, satisfaction with prescriber medication monitoring, and access to and satisfaction with prescribing healthcare providers. Survey development was informed by findings obtained from a focus group of seven parents with an adolescent or adult child prescribed psychotropic medication (see Lake, Milovanov, Sawyer & Lunsky in press, for further detail on the focus group). During this previously conducted focus group, parents discussed their experience with medication use and interactions with prescribers. Emergent themes from the group helped frame the final version of the current survey, and also formed the basis of subsequent analyses in the present study. Prior to launching the survey, measures were piloted among participants of the focus group and adapted accordingly. The final version of the survey took ∼20 minutes to complete, and could be completed online or by phone. All parents provided informed written consent after being provided with a detailed description of the study. This study received ethics approval through the relevant institution's institutional review board.

Study demographic and clinical variables

The following demographic and clinical variables were examined at the descriptive level: Gender, ID status, ethnicity, residence, structured daily activity, medical comorbidity, psychiatric comorbidity, body mass index (BMI), and ASD severity. Individuals were classified as having ID if parents indicated that their child had a diagnosis of mild, moderate, severe, or profound ID. ASD symptom severity was measured using the SCQ (Rutter et al. 2003), a validated parent-report instrument of autism severity. The SCQ consists of 40 items, based on the Autism Diagnostic Interview-Revised (ADI-R), which has demonstrated validity (Howlin and Karpf 2004; Chandler et al. 2007; Witwer and Lecavalier 2007) and good internal consistency, with Chronbach α ranging from 0.81 to 0.93 (Naglieri and Chambers 2009). Information on BMI was obtained through parent reported child height, weight, and pant size/waist circumference.

Medication and side effects

Medications were categorized into the following 11 medication classes for standard use. 1) Psychotropic medications: Antidepressants, anxiolytics, atypical antipsychotics, typical antipsychotics, stimulants, mood stabilizers, and 2) Nonpsychotropic medications: Anticonvulsants, antihypertensives, medications for gastrointestinal issues, medications for sleep issues (e.g., melatonin, zoplicone), and other nonpsychotropic medications. Only antihypertensive medications that had evidence for the treatment of hyperactivity, inattention, or impulsivity, such as clonidine or guanfacine (Posey et al. 2004; Arnsten et al. 2007) were categorized as psychotropic medication, as was done by others (Langworthy-Lam et al. 2002; Aman et al. 2003; Logan et al. 2012; Lake, Weiss, Dergal & Lunsky 2014). Similarly, the distinction between mood stabilizers and anticonvulsants was made by classifying medications (e.g., valproate and carbamazepine) as mood stabilizers for all individuals who did not have a diagnosis of seizure disorder, as has been done previously (Esbensen et al. 2009; Lake et al. 2012; Spencer et al. 2013).

Parents were also asked if their child had experienced side effects as a result of medication use (yes, no, don't know), what side effects their child had experienced (open ended), and what effect they felt medication(s) had on their child's psychological well-being (good or mostly good, neutral, bad or mostly bad). Medication side effects were then classified into the following categories: Metabolic (e.g., weight gain, increased appetite, increased blood pressure, increased blood sugar), cardiac (e.g., increased heart rate), movement (e.g., muscle stiffness, tics, involuntary movements), fatigue/sleep (e.g., lethargy, somnolence, sedation, nightmares), general neurological change (e.g., headaches, dizziness, disorientation, slowing down, being subdued), behavior change (e.g., mania, fixed thoughts, aggression, anxiety, irritability, depression), serious neurological events (e.g., seizure), endocrine (e.g., lactation, breast growth), dermatological (e.g., acne), gastrointestinal (e.g., constipation, loose bowels, nausea), hematological (e.g., nose bleed, low iron), temperature dysregulation (e.g., heat sensitivity, fever), weight loss, thirst, sexual (e.g., sexual dysfunction), and genitourinary (e.g., urinary retention). Classifications were based on literature on medication side effects (Matson et al., 1998; American Society of Drug Information 2014), and side effects were independently verified and coded by two authors (V.V., A.S.).

Parent views about medication

We examined the following variables regarding parents' views about medication: Reason(s) for medication prescription (targeted symptoms) and parental ratings of their comfort with medication(s) (comfortable, neutral, uncomfortable). Targeted symptoms were classified into the following four behavior or mental health categories based on parent report of why their child was prescribed medication: Externalizing behaviors (e.g., repetitive, aggressive, oppositional, or self-injurious behavior, attention-deficit/hyperactivity disorder [ADHD] symptoms), internalizing problems (e.g., anxiety, depression, bipolar disorder), social issues (e.g., social appropriateness, eye contact, understanding emotional cues), and psychotic disorder (e.g., schizophrenia, schizoaffective disorder).

Parent views about healthcare services

We examined the following variables related to parents' views about healthcare services: Prescriber expertise in ASD (yes/no), use of previous supports or services prior to medication use (yes/no), satisfaction with how medication was monitored by prescribing healthcare provider (satisfied, neutral, or dissatisfied), and role of nonpharmacological services (healthcare provider/school/service suggested medication, no access/availability of nonpharmacological services, nonpharmacological services not/partially working).

Data Analysis

Descriptive statistics were used to describe demographic and clinical information for the sample (numbers and percentages for count data and means and standard deviations for continuous variables). Bivariate analyses were conducted to compare the views of parents of adolescents versus those of young adults with ASD in terms of their child's medication use, the type and number of medications their child was prescribed, and their views about healthcare services. Statistical analyses were conducted using SPSS version 20.0.

Results

Medication and side effects

As shown in Table 2, antipsychotic medications were the most commonly prescribed medication among the total sample (56%), and among adolescents specifically (54.5%). Young adults (68.9%) were significantly more likely to use antidepressant medications than adolescents (41.8%), χ²(1)=7.3, p=0.007, and adolescents (40.0%) were more likely to use stimulants than young adults (15.6%), χ²(1)=7.18, p=0.007. On average, young adults were prescribed more psychotropic and non-psychotropic medications (mean=2.27) than adolescents (mean=1.91), and almost half of all adolescents (43.7%) and young adults (48.9%) were taking two or more psychotropic medications concurrently. As shown in Table 3, parents of adolescents (85.5%) were significantly more likely to have a child prescribed psychotropic medication for externalizing behaviors than were parents of young adults (61.4%), χ²(1)=7.52, p=0.006. Forty percent of young adults used nonpsychotropic medications in addition to a psychotropic medication, whereas only 25% of adolescents used these medications.

Table 2.

Medication Use Associated with Adolescents and Young Adults with Autism Spectrum Disorder (ASD) (N=100)

	Adolescents(n=55)		Young adults (n=45)
Parameter	%	Mean (SD)	%	Mean (SD)	p value
Medication drug classes
Antipsychotic	54.5		57.8		χ ²(1)=0.105, p=0.75
Anxiolytic	7.3		6.7		χ ²(1)=0.014, p=0.91
Antidepressant	41.8		68.9		χ ²(1)=7.302, p=0.007^**
Mood stabilizer	0		4.4		χ ²(1)=2.49, p=0.11
Stimulant	40.0		15.6		χ ²(1)=7.18, p=0.007^**
Nonpsychotropic medication	25.5		40.0		χ ²(1)=2.41, p=0.12
Number of medications
Mean number of total medications		1.91 (1.08)		2.27 (1.53)	t(98)=1.37, p=0.17
2 concurrent psychotropic medications	43.7		48.9

p≤0.01.

Table 3.

Parent Perspectives on Medication Use Among Adolescents and Young Adults with Autism Spectrum Disorder (ASD) (N=100)

Parameter	Adolescents (n=55) %	Young adults (n=45) %	p value
Reason for medication prescription
Externalizing behaviors	85.5	61.4	χ ²(1)=7.52, p=0.006^**
Internalizing problems	70.9	84.1	χ ²(1)=2.38, p=0.12
Social issues	12.7	11.6	χ ²(1)=0.03, p=0.87
Psychotic disorder	5.5	9.1	χ ²(1)=0.49, p=0.48
Comfort with medication use
Comfortable	36.4	33.3	χ ²(3)=2.49, p=0.48
Neutral	49.1	40.0
Uncomfortable	3.6	8.9
Other	10.9	17.8
Medication efficacy
Good or mostly good	77.4	80.0	χ ²(2)=0.44, p=0.80
Neutral	17.0	12.5
Bad or mostly bad	5.7	7.5

p≤0.01.

As shown in Table 4, parents of adolescents (70.9%) were more likely to report that their child had experienced side effects as a result of psychotropic medication use than were parents of young adults (48.8%), χ²(2)=7.27, p=0.003. Specifically, parents of adolescents were more likely to report that their child had experienced weight loss as a side effect of medication use, and although not statistically significant, metabolic side effects were also more common among adolescents (30.9%) than young adults (19.5%), Almost half of the total sample fell in either the overweight (24.4%) or obese (20.0%) BMI category, and nearly one quarter of parents of young adults reported that they did not know if their child had experienced medication side effects, compared with only 6% of parents of adolescents. Most parents in both groups (adolescents=77.4%; young adults=80.0%) believed that medication had a good/mostly good effect on their child's behavior or mental health, and approximately one third of parents of both adolescents and young adults reported that they were comfortable with the medication(s) their child was taking.

Table 4.

Type and Number of Medication Side Effects Associated with Adolescents and Young Adults with Autism Spectrum Disorder (ASD) (N=100)

	Adolescents (n=55)		Young adults (n=45)
Parameter	%	Rank	%	Rank	p value
Medication side effects
Yes	70.9		48.8		χ ²(2)=7.27, p=0.003^**
No	23.6		29.3
Don't know	5.5		22.0
Top 5 most commonly reported medication side effects
Metabolic	30.9	1	19.5	2
Fatigue/sleep	23.6	2	22.0	1
Weight loss	16.4	3	2.4	-
Behavior change	16.4	3	12.2	4
Movement	14.5	4	7.3	5
General neurological change	9.1	5	17.1	3
Gastrointestinal	9.1	5	7.3	5

p≤0.01.

Parent views about healthcare services

Most parents of adolescents (80.0%) and young adults (84.4%) indicated that their child's prescriber monitored their child's medications two or three times a year or less. Parents of young adults were less satisfied with how their prescriber monitored their child's medication, χ²(1)=4.48, p=0.03, and were less likely to feel that their prescriber had adequate expertise in ASD, χ²(1)=5.14, p=0.02. Compared with parents of adolescents, parents of young adults were also less likely to use previous supports or services before trying medication (p=0.05). Finally, almost one third of adolescents and one quarter of young adults reported that nonpharmacological services or supports were not or only partially working for behavior or mental health problems (Table 5).

Table 5.

Parent Views About Healthcare Services Associated with Adolescents and Young Adults with Autism Spectrum Disorder (ASD) (N=100)

Parameter	Adolescents (n=55) %	Young adults (n=45) %	p value
Views about prescribers
Prescriber expertise in ASD
Yes	69.1	43.9	χ ²(1)=5.14, p=0.02^*
No	30.9	56.1
Satisfaction with prescriber medication monitoring
Satisfied	53.7	38.1	χ ²(1)=4.48, p=0.03^*
Neutral or dissatisfied	46.3	67.9
Views about services
Use of nonpharmacological services prior to initiating medication use
Yes	81.8	64.4	χ ²(1)=3.88, p=0.05^*
Role of nonpharmacological services
No access to or availability of nonpharmacological services	1.9	9.8	χ ²(3)=3.40, p=0.33
Nonpharmacological supports not or only partially working	32.7	24.4
Healthcare provider, school, or other service suggested medication	51.9	48.8
Other	13.5	17.1

p≤0.05.

Discussion

This is the first study to examine parent perspectives of their child's psychotropic medication use by comparing the experiences of parents of adolescents with parents of young adults transitioning out of the pediatric healthcare system. Findings highlight key differences between the experiences of adolescents and their parents and the experiences of young adults and their parents. The two groups differed in terms of their medication profiles, medication side effects, satisfaction with care from prescribers, and relative use of other healthcare services. Differences point to target areas for intervention and opportunities for intervention with youth and their families prior to adulthood.

Consistent with previous studies (Aman et al. 2005; Mandell et al. 2008), the most frequent reason for a medication prescription among adolescents was externalizing behaviors, whereas internalizing problems were more common among young adults. Medication profiles reflected these differences with stimulant medications more frequently prescribed among adolescents (adolescents=40%; young adults=16%), and antidepressants among young adults (adolescents=42% young adults=69%). Better evidence of the efficacy of antidepressant use in adults with ASD may in part explain this difference (Doyle and McDougle 2012).

In terms of medication side effects, parents of adolescents were more likely to report that their child had experienced side effects than were parents of young adults. This finding may reflect differences in the metabolism of specific medications in adolescents versus in adults (Ginsberg et al. 2002), but it may also be that with chronic medication use, parents of young adults become less aware of medication side effects than parents of adolescents. Another possibility is that the greater number of side effects observed in adolescents is linked to higher stimulant use which is associated with more frequent reports of weight loss and movement abnormalities (Stigler et al. 2004; Faraone et al. 2008). In our study, nearly one quarter of parents of young adults reported that they did not know if their child was experiencing medication side effects. The mean number of medications for young adults (2.27) was higher than for adolescents (1.91) in the current study, perhaps making it difficult to discern side effects.

One of the most concerning side effects of medication use is weight gain. In the current study, almost half of all young adults and adolescents were overweight or obese, a finding consistent with studies of young adults with ASD (Eaves and Ho 2008), but higher than what has been reported in studies of children with ASD (Zuckerman et al. 2014). This rate is also more than double the rate among the general adolescent population (Roberts et al. 2012). Similarly, almost one third of adolescents reported metabolic side effects, which is not surprising, given that 84% were prescribed antipsychotic drugs. More specifically, 71% of these individuals were prescribed atypical antipsychotic medications (e.g., risperidone, olanzapine, aripiprazole, paliperidone), all medications with known metabolic effects. While medication use is one contributor of obesity, there are a number of other factors that may also contribute, including restrictive eating patterns, motor impairments, cognitive impairments, and medical comorbidities, all common among individuals with ASD (Egan et al. 2013; Zuckerman et al. 2014). In addition to high rates of metabolic side effects, parents of adolescents were more likely to report weight loss or decreased appetite as a result of medication use; however, this may be the result of greater use of stimulants among adolescents. For these reasons, there is an even greater need for prescribers to monitor for metabolic side effects when prescribing psychotropic medications that have the potential to cause weight gain or loss among individuals with ASD.

In the current study, ∼80% of individuals using medication had their medication monitored only two to three times a year or less, despite almost half of the sample taking two or more psychotropic medications concurrently. This finding is concerning in the context of recent guidelines for the primary care of persons with developmental disabilities, which recommend medication monitoring every 3 months (Sullivan et al. 2011). Guidelines developed by the National Institute for Health and Care Excellence (NICE) (NICE 2012) suggest medication monitoring every 2–3 weeks during the initiation phase of a psychotropic medication prescription, but do not specify ongoing monitoring requirements. Canadian guidelines for the monitoring of antipsychotic medications recommend monitoring antipsychotic medications every 3–6 months, and more frequently in vulnerable populations, including individuals with ASD (McCracken 2005; Cohn and Semyak 2006). Individuals with ASD are more sensitive to medication side effects, adding to the need to carefully monitor medication use in this population (McCracken 2005). This may be linked to the finding that some parents were dissatisfied with how their child's medications were monitored. Unfortunately, this problem may be compounded by challenges finding a prescribing healthcare provider who is comfortable or familiar prescribing and monitoring medications for individuals with ASD, especially in adulthood. Together, findings highlight the need for prescribers to monitor psychotropic and nonpsychotropic medications, particularly as individuals with ASD age and may be at greater risk for comorbid conditions and the use of multiple medications.

Compared with parents of adolescents, parents of young adults with ASD were significantly less likely to believe their prescriber had adequate expertise in ASD, and also felt less satisfied with how their prescriber monitored their child's medication. This finding is concerning given heightened rates of comorbid psychiatric (Kohane et al. 2012; Doshi-Velez et al. 2014) and medical problems (Bauman 2010; Kohane et al. 2012; Doshi-Velez et al. 2014) among adults with ASD. As individuals age, the likelihood of developing a comorbid medical problem increases, and although our sample of adults was relatively young, almost half of them were prescribed nonpsychotropic medications in addition to a psychotropic medication prescription. Going forward, it will be important to understand why young adults are prescribed nonpsychotropic medications (e.g., to counteract effect of psychotropic drugs or for health issues), as well as how best to support the complex medical and psychiatric needs of this population.

Findings suggest that the pathway to medication use may be different for parents of young adults than for adolescents. Not only did the medication profiles of adolescent and young adults with ASD differ, but their experiences with healthcare services did also. There are a number of possible explanations for these differences; results could be explained by a cohort effect where older parents simply have different experiences than younger parents. It could also be the case that when parents start their child on medication later in life, they are less likely to pursue other services and supports. Or it may be that parents of young adults experience greater difficulty finding and accessing services or supports for their adult child once they are no longer eligible for services funded through the educational or pediatric healthcare systems. Despite the fact that a number of evidence-based nonpharmacological practices for individuals with ASD exist, including intensive behavior intervention, positive behavior supports, and cognitive behavior therapy (Perry and Condillac 2003), medication may be the only readily available, accessible, and funded treatment option for many young adults. Other studies have shown that there may be barriers to accessing appropriate nonpharmacological services once individuals with ASD reach adulthood (Gerhardt and Lainer 2011; Shattuck et al. 2011,\ 2012). Regardless of age, it is important that all individuals with ASD follow guidelines that argue for access to psychosocial interventions prior to medication use for the treatment of mental health issues among individuals with ASD (Sullivan et al. 2011; NICE 2012).

Limitations

The study is subject to a number of limitations. First, findings are based on parent report data, and we did not have access to corroborating sources to validate diagnoses or medications. However, only individuals with an SCQ score at or above the recommended cutoff (≥12) (Brooks and Benson 2013) were included in these analyses. It is possible that some individuals in this study would not meet full Diagnostic and Statistical Manual of Mental Disorders, 5th ed. (DSM-V) criteria for ASD; however, previous studies suggest that parent-reported ASD diagnoses produce prevalence estimates comparable to population-based studies using validated medical records or diagnostic tools (Kogan et al. 2008; Centers for Disease Control 2012; American Psychiatric Association 2013; Centers for Disease Control 2013). Although we recognize that our sample may not be representative of all individuals with ASD, most individuals with ASD tend to reside with their parents well into adulthood (Howlin and Moss 2012); therefore, findings from parent report surveys have considerable value in enabling our understanding of adolescents and young adults with ASD. In addition, the authors did not have access to longitudinal medication information. This information could help clarify, for example, the relationship between satisfaction with medication monitoring and medication side effects, efficacy, comfort, or prescriber expertise. Similarly, despite its constraints, a number of studies have used similar survey-based methods to study this population (Montes and Halterman 2007; Mazurek et al. 2011; Blumberg et al. 2013; Mazurek 2014) including the 2011–2012 National Survey of Children's Health (Centers for Disease Control 2013) and the 2011–2012 National Health Interview Survey (Centers for Disease Control 2012).

Conclusions

In the current study, young adults with ASD accessed fewer nonpharmacological supports before trying a medication prescription, and parents felt that their prescribers had less expertise in ASD. This may suggest that young adults face particular challenges accessing services and supports once they age out of the pediatric system; a concerning finding given heightened rates of comorbid psychiatric disorders and medication use in adulthood. Given high rates of medication use observed in this population, an important next step will be to identify ways to support and train healthcare providers in obtaining the expertise to effectively care for these individuals. This will also involve ensuring that medications are prescribed and monitored according to best practice guidelines.

Clinical Significance

This is the first study of adolescents and young adults with ASD to examine parent perspectives of their child's psychotropic medication use and their views about healthcare services. Findings indicated that compared with parents of adolescents, parents of young adults were less likely to access nonpharmacological services and supports prior to initiating a psychotropic medication. Parents of young adults were also less likely to feel that their prescriber had expertise in ASD, and were less satisfied with how their child's medications were monitored. This may suggest there are limited nonpharmacological services for young adults with ASD, and also highlights the need to build capacity among clinicians providing care to young adults where there are fewer mental health professionals who feel equipped to provide care to this population.

Footnotes

Disclosures

No competing financial interests exist.

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