Needs assessment in unmet healthcare and family support services: A survey of caregivers of children and youth with Autism Spectrum Disorder in Delaware

Abstract

The study aimed to collect data from families of children and youth with Autism Spectrum Disorder (ASD) in the state of Delaware, USA to understand their ongoing needs and challenges in accessing child healthcare and family support services. We analyzed responses from 263 caregivers of children and youth with ASD from 3 to 24 years using a statewide needs assessment survey. Over 50% caregivers indicated having unmet needs relative to both child/youth healthcare services and family support services. Between 24 to 38% caregivers expressed unmet needs for healthcare services such as social skills training, speech-language therapy, behavioral intervention, and occupational therapy for their child and 20–24% expressed needs for family support services such as respite care, parent/sibling support groups, counseling, and babysitting support. Additionally, number of prior early interventions received, limitations in accessing healthcare services, and unmet needs for family support services significantly predicted participant’s unmet healthcare needs. Greater ASD severity and difficulties accessing child/youth healthcare services predicted participant’s functional dependence on caregivers for activities of daily living. Together, these findings call for designing holistic, family-centered interventions that address needs of both children and youth with ASD and their families.

Lay Abstract

A statewide needs assessment survey of caregivers of children and youth with ASD revealed that 50% responders had unmet needs relative to both child/youth healthcare services and family support services. Number of prior services received, limitations in accessing healthcare, and unmet needs for family support are linked to participant’s unmet healthcare needs. Severity of autism and difficulties accessing child/youth healthcare are associated with participant’s functional dependence. Together, these findings call for placing the family at the heart of the service system in ASD.

Introduction

Autism Spectrum Disorder (ASD) is a lifespan neurodevelopmental disorder characterized by social communication difficulties and highly repetitive and restricted behaviors/interests (American Psychiatric Association, 2013). Presently, 1 in every 54 children qualifies for an ASD diagnosis (Maenner et al., 2020). Although there is considerable variability in the literature regarding prevalence estimates related to the stability of ASD diagnosis and the continuity of autism symptoms from childhood to adolescence, there seems to be overall consensus that a majority of children with ASD retain their diagnosis into adulthood with persistent difficulties in social communication, adaptive behavior, and daily living skills (Anderson et al., 2014; Ballaban-Gil et al., 1996; Cadman et al., 2012; Howlin et al., 2004; Lord et al., 2015; McGovern & Sigman, 2005; Pellicano et al., 2020). Only a small minority of individuals appear to move “off the spectrum” with residual deficits in social and pragmatic communication (Anderson et al., 2014; Fein et al., 2013; Kelley et al., 2006); however, there is a clear need for more research to validate these findings. Moreover, children with ASD also frequently have co-morbid behavioral, psychiatric, and neurological conditions including developmental delays, attention deficit/hyperactivity disorder, anxiety, bipolar/mood disorders, etc. (Boulet et al., 2009; Kohane et al., 2012; Maski et al., 2011; Vohra et al., 2014). In fact a recent umbrella review of 26 systematic reviews and meta-analyses suggested that although prevalence estimates of different co-morbid psychiatric diagnoses in ASD varied widely across studies, the epidemiological burden of comorbidities is considerably high, compounding the functional deficits in this population (Hossain et al., 2020). Given the multisystem nature of ASD and its associated comorbidities, individuals with ASD require a broad range of medical and specialty healthcare services (Benevides et al., 2016; Brown et al., 2010; Kogan et al., 2008; Lindly, et al., 2016; Vohra et al., 2014).

Children with ASD utilize substantially more services including mental health, physical therapy (PT), occupational therapy (OT), and speech-language therapy (SLT) services compared to children with other developmental disabilities (DD) (Boulet et al., 2009; Brown et al., 2010; Chiri & Warfield, 2012; Farmer et al., 2014; Gurney et al., 2006; Karpur et al., 2019). Children without disabilities typically have 1.75 physician and 0.30 other medical visits in 12 months. On the other hand, elementary school-aged children with ASD typically average much higher at around 6.44 health-related services over a period of only 6 months, with an average of 7.7 professional visits and 4.4 agency visits (Kohler, 1999; Newacheck & Kim, 2005). The complexity of the disorder/co-morbidities and the lack of evidence for a single treatment modality that can address the multisystem deficits in ASD necessitates that families seek services from multiple professionals to address children’s multisystem needs (Brown et al., 2010; Vohra et al., 2014).

In fact, polytherapy is the norm in ASD, with families seeking between 4–9 services simultaneously for their child with ASD (Goin-Kochel et al., 2007; Kohler, 1999; Ruble & McGrew, 2007; Thomas et al., 2007). For example, children with ASD and their families frequently receive 4 different types of services outside the school system, such as SLT, social skills therapy, OT, behavior intervention, medical services, biomedical treatments, respite care, family counseling, and case management (Thomas et al., 2007). Similarly, a large, internet-based, international study suggested that children on an average had previously tried 7–9 therapies and were presently receiving 4–6 therapies simultaneously; children with autistic disorder or PDD-NOS received more behavioral/educational/alternative treatments compared to children with Asperger’s syndrome and younger children were more likely to receive behavioral treatments compared to adolescents who were more likely to receive medications (Goin-Kochel et al., 2007). Most commonly employed therapies in ASD include evidence-based approaches such as SLT and behavioral interventions including Applied Behavioral Analysis (Le Grice & McMenamin, March 2002; Politte et al., 2015). However, caregivers frequently also turn towards non-empirically validated behavioral therapies and complementary and alternative medicine-based approaches that lack scientific efficacy data, with the hope of finding beneficial interventions that can address their child’s complex needs (Goin-Kochel et al., 2007; Green et al., 2006; Politte et al., 2015). Overall, parents of children with ASD utilize a plethora of services for their children and are in fact always on the lookout for newer interventions to address the multiple needs of their children.

Despite greater service utilization, families of children with ASD report greater unmet child healthcare needs and difficulties accessing services compared to children with DD and typically developing (TD) peers (Chiri & Warfield, 2012; Krauss et al., 2003; Liptak et al., 2006; Siklos & Kerns, 2006; Vohra et al., 2014). A national survey based on 3–17 year-olds suggested that children and youth with ASD are more likely to have unmet needs for child healthcare services, family support services, and family-centered care and also report problems with referrals, care coordination, and service access compared to children with other special needs (Kogan et al., 2008). Despite similar healthcare plans, one-third of children with ASD have difficulties accessing specialty healthcare compared to one-fifth children with other special needs (Krauss et al., 2003).

Unmet service needs are associated with child characteristics including age, autism severity, functional ability, and problem behaviors (Bromley et al., 2004; Hodgetts et al., 2015; Kogan et al., 2008; Siklos & Kerns, 2006), parent characteristics including maternal education and income (Hodgetts et al., 2015; Magaña et al., 2013), and other factors including knowledge about services, social support, and limited provider skills (Brown et al., 2012; Chiri & Warfield, 2012; Krauss et al., 2003; Lopez et al., 2019). Greater service needs place significant demands on a finite, resource-limited service system (Brown et al., 2010). Overall, there is a clear need to identify critical unmet needs to ensure priority-based service allocation and effective service delivery in ASD.

A diagnosis of ASD is associated with substantial caregiver burden including higher levels of parental stress, greater risk for negative psychological and emotional consequences, and substantial financial and employment loss/reduction (Galpin et al., 2018; Lindly et al., 2016; Zuckerman, Lindly, Bethell, & Kuhlthau, 2014). Employment-related losses lead to 20–30% lowering of annual household income in families having children with ASD compared to control families (Cidav et al., 2012; Houser et al., 2014). Such disruptions ultimately add to the caregiver burden by limiting families’ access to quality child healthcare. Moreover, increased caregiver stress and lower well-being contribute to poor outcomes in children with ASD (Smith & Anderson, 2014). Therefore, research identifying critical child and family support needs is warranted to help design holistic services that effectively address both child and family support needs and ultimately facilitate optimal outcomes for the child with ASD.

The current study is based on a needs assessment survey conducted by the University of Delaware’s Center for Disabilities Studies (CDS) as part of a planning initiative aimed at conducting a comprehensive statewide appraisal of ongoing needs and service-related challenges faced by individuals with ASD in Delaware (DE) across the lifespan, and developing a strategic plan to improve services for individuals with ASD with an emphasis on family participation. To the best of our knowledge, few studies have reported findings from statewide surveys designed to identify service needs in individuals with ASD and their families in the US (Mello et al., 2016; Murphy & Ruble, 2012; Ruble & McGrew, 2007; Schott et al., 2020; Turcotte et al., 2016). For example, Schott and colleagues (2020) conducted a statewide survey in Pennsylvania (PA) on adults with ASD and their caregivers on the waiting list for the Medicaid-funded, Home and Community-based services (HCBS) waiver program using the 2018 PA Autism Needs Assessment survey. They found that over 50% individuals had unmet needs relative to functional skills services, vocational services, and mental and behavioral health services (Schott et al., 2020). Similarly, in a different statewide study conducted in Kentucky, it was found that caregivers in rural and urban areas both experienced difficulties in accessing appropriate services, trained professionals, and educators for their 2.5–21 year old children and youth with ASD (Murphy & Ruble, 2012). To date, there has been no research on healthcare and family support service needs in children and youth with ASD and their families in the state of DE. The current study addresses this critical research gap by reporting on statewide data collected from a needs assessment survey identifying caregiver-reported needs of children & youth with ASD and their families.

The current paper summarizes findings from the needs assessment survey and also describes how findings from this survey were used to build a strategic plan for action in the state of DE. Furthermore, we will also briefly discuss the state-level initiatives undertaken to address the gaps identified through the survey within the state of DE, specifically within the areas of early identification and diagnosis, early intervention, and family-centered care. We hope that this descriptive account from the conduct of the survey to using its findings to unite key stakeholders within the state of DE, and ultimately to develop and implement action initiatives in the field will provide a model for other states in their efforts to address the needs of families with ASD and improve care of children and youth with ASD.

The statewide survey funded through a HRSA grant awarded to the state of DE was designed with the following 2 broad aims: (1) to assess the current impact of ASD diagnosis on the child/youth’s health and functional ability as well as the health and well-being of their entire family (siblings and caregivers), and (2) to identify family-perceived unmet needs related to child and youth healthcare and family support services. Accordingly, the needs assessment survey explored the following topics: receipt of diagnosis and follow-up care, barriers and limitations to accessing health care, family impact, service needs, and unwanted outcomes due to ASD. Our first research question related to identifying the current healthcare and support service needs of children and youth with ASD and their families within the state of DE. Our second research question explored factors predictive of unmet healthcare needs in children and youth with ASD. Based on previous literature, we hypothesized that the severity of ASD diagnosis (indicated by the number of prior services received), limitations in accessing child/youth healthcare services, and number of unmet family support services would all be significantly positively associated with participant’s unmet healthcare needs. Our third research question probed factors predictive of functional dependence levels of children and youth with ASD. We hypothesized that a lower age at which parents felt concerns regarding their child’s development, a primary diagnosis of Autism/Autistic disorder, and greater number of limitations in accessing child/youth services would be predictive of greater functional dependence on caregivers. Lastly, we investigated the impact of ASD-related issues on caregivers’ ability to work. We hypothesized that lower annual household income, lower age of caregiver concerns, and greater unmet family support service needs would be associated with a larger negative impact on caregivers’ employment.

Methods

Participants and procedures

Caregivers of 263 children and youth with ASD in the state of DE filled out a needs assessment survey developed by CDS at the University of Delaware (UD) as part of a federally-funded planning initiative aimed at conducting a comprehensive statewide appraisal of ongoing needs and service-related challenges faced by individuals with ASD in DE across the lifespan. Through this initiative, CDS distributed a needs assessment survey to 3 groups of individuals including caregivers of children and youth with ASD, caregivers of adults with ASD, and adult self-advocates with ASD. The data reported in this paper are based on the survey filled out by one of the three groups, i.e. caregivers of children and youth with ASD between 3 and 24 years in the state of DE (Rhoton & Ekbladh, 2012). Data from caregivers of adults with ASD and adult self-advocates with ASD will be reported in a future publication.

The inclusion criteria were caregivers over 18 years of age (parents, grandparents, extended family, legal guardians or foster parents) of children and youth who (1) had a primary diagnosis or educational classification of Autism/Autistic Disorder, Asperger’s syndrome, or Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) according to the Diagnostic and Statistical Manual of Mental disorders, 4^th edition (DSM-IV-TR) (American Psychiatric Association, 2000) and (2) were between 3 and 24 years. In families with multiple children with ASD, caregivers were asked to fill out a survey for each child. If caregivers were filling out only one survey, they were asked to provide information pertaining to their oldest child with ASD.

Surveys were available in paper and electronic/online versions and were distributed to families by the Delaware Department of Education and the Delaware Division of Developmental Disabilities Services. Paper copies of the survey were mailed out to families who had children with a classification of “autism” in the Delaware public school system. The mailed out surveys included a cover letter with contact information of the 2^nd author that caregivers could use in case of any questions while filling out the survey. Online survey links were posted on the websites of the CDS and statewide organizations including Autism Delaware, Delaware Family Voices, and the Parent Information Center of Delaware. The surveys were distributed between November 2011 and January 2012.

Incoming survey responses were screened to check eligibility of responses against the inclusion criteria. Surveys that met the inclusion criteria were entered into the survey database by research staff at CDS under the oversight of the 2^nd author. Data entry into the database were completed by the first half of 2012.

Survey instrument

The survey used in this study was modeled on the 2009 Pennsylvania Autism Needs Assessment survey developed by the Center for Autism Research in Pennsylvania (Shea, 2009; Turcotte et al., 2016), but altered by CDS to be more applicable to the needs of families of children and youth with ASD in the state of DE. The survey was available in English and Spanish languages. The 2^nd author was involved in the modification of the original survey. The modifications included adding questions about Medicaid providers and asking caregivers about the distance families traveled to receive a diagnosis of ASD for their child. The modifications of the original survey were based on several discussions held at UD CDS with key state stakeholders including agency leaders and families of individuals with ASD. The survey was modified while being sensitive to the language that families of children and youth with ASD were likely to easily comprehend while completing the survey.

The survey collected information from caregivers within the following domains: (a) child and family characteristics including demographics, details of diagnoses/comorbidities, children’s functional levels, and family socioeconomic status, (b) impact of systemic challenges presented by ASD diagnosis on the family including on siblings and caregiver employment, and (c) met and unmet service needs and limitations in accessing medical, specialty healthcare, and family support services (see Table 1 and Appendix A for details, bolded text in Appendix A explains how text data were transformed to numerical data for analyses). Based on the comorbidities commonly associated with a diagnosis of ASD, we asked caregivers to indicate if their child had comorbid diagnoses including developmental delays, attention deficit/hyperactivity disorder, learning disability, anxiety disorder, intellectual disability, obsessive compulsive disorder, other psychiatric diagnoses (bipolar, conduct disorders, depression, oppositional defiance disorder), other medical diagnoses (seizures, hearing impairment, blindness, central auditory processing disorder), and other developmental diagnoses (sensory dysfunction, developmental coordination disorder). In terms of race/ethnicity, respondents were able to select multiple options. If respondents selected multiple options in their response, they were coded as having “mixed race/ethnicity” (see Appendix A for details).

Table 1:

Key variables measured in the needs assessment survey

Variable	Q #	Question verbiage and response options available	Score Range	Variable calculation
Total unmet child healthcare service needs	43	Please tell us about child’s specialty health and education service and adaptive equipment needs: mental health counseling, SLT, OT, PT, social skills training, behavior intervention, one-to-one support, mobile therapy, case management, neurology services, medication management, summer camp, summer school/ESY, sexual health training, transition planning from pediatric to adult healthcare, vocational training, relationship counseling, other (please specify) ______ [My child is receiving, My child is receiving but needs more, My child is receiving but does not need it, My child is not receiving but needs it, My child is not receiving]	0–17	Unmet need per service scored as 0 or 1. Score of 1 given for a service if response choice was “my child is receiving but needs more” or “my child is not receiving but needs it”. Unmet need scores for all 17 services summed to calculate total unmet child healthcare service needs score. Higher scores indicate greater unmet need.
Total unmet family support service needs	47	Please tell us about your family support service needs: respite care (short term care), babysitting, afterschool care, weekend care, family counseling, sibling support groups, sibling mental health counseling, parent support group, parent mental health counseling. [My family is receiving, My family is receiving but needs more, My family is receiving but does not need it, My family is not receiving but needs it, My family is not receiving]	0–9	Unmet need per service scored as 0 or 1. Score of 1 given for a service if response choice was “my family is receiving but needs more” or “my family is not receiving but needs it”. Unmet need scores for all 9 services summed to calculate total unmet family support service needs score. Higher scores indicate greater unmet need.
Satisfaction with professionals providing services	44 & 48	How strongly do you agree or disagree with the following statement? “The professionals providing this service have the necessary skills to work with my child/family”. Caregivers asked to rate all 17 child healthcare services and 9 family support services listed in rows above. [Strongly agree, agree, disagree, strongly disagree, N/A]	0–100%	Proportion of caregivers who indicated responses of “strongly agree” or “agree” per service calculated.
Effectiveness of services	45 & 49	How strongly do you agree or disagree with the following statement? “The service is effective in meeting my child/family’s needs” Caregivers asked to rate all 17 child healthcare and 9 family support services. [Strongly agree, agree, disagree, strongly disagree, N/A]	0–100%	Proportion of caregivers who indicated responses of “strongly agree” or “agree” per service calculated.
# of limitations in accessing services	46 & 50	What limitations do you face accessing specialty health and education services/family support services mentioned? (Check all that apply): Transportation, scheduling issues, child’s behavior problems, shortage of service providers in the area, no service providers in that area won’t see individuals with autism, cost of services/my insurance does not cover available services, provider does not accept my insurance, none, other (please specify)_______________	0–9	All options checked by caregivers summed to create total limitations in accessing child healthcare/family support services.
Functional dependence	38	Is your child capable of following activities?: Toileting, feeding self, dressing self, requesting things he/she needs, requesting things he/she wants, indicating when he/she is hurt/sick [Independently, with help, not capable]	0–12	Each of the 6 functional activities were rated on a 0–2 scale: 0 – independent, 1 – performs with help, 2 – not capable. Total functional dependence score was calculated by summing individual dependence scores on all 6 items. Higher scores indicate greater dependence on others for daily function.
Negative impact of ASD-related issues on caregiver’s ability to work	34	In what ways (if any) has your child’s autism affected your family’s ability to work? (Check all that apply): (Separate columns for caregivers to check off impact on themselves and their partners) Stopped work outside the home, decreased work hours, increased work hours, changed employer, changed type of work, changed schedule, changed position with same employer, used family medical leave act, lost promotion/advancement opportunities, terminated from employment, disciplined/suspended, none, other (please specify)__________________	0–2	Variable scored for family as 0 if no impact on work of caregiver or their partner, 1 if either caregiver or partner experienced mild impact on work (chose options of decreased work hours, increased work hours, changed schedule, changed employer, changed position with same employer, changed type of work, or used FMLA), 2 if severe impact on ability to work (chose options of stopped working outside the home, lost promotion/advancement opportunities, terminated from employment, or disciplined/suspended) If score of 1 received by caregiver and score of 2 received by partner, family still received overall score of 2.
# of prior services received	16	What services did your child receive prior to receiving school-based services? (Check all that apply): Early intervention, SLT, PT, child development watch, behavioral/mental health services, other (please specify)_______________	0–5	For every service selected, a score of 1 was given. A sum of total prior services was calculated. Higher scores indicated greater # of prior services received prior to school-based services.

Q: Question; SLT: Speech-language therapy; PT: Physical therapy; OT: Occupational therapy; FMLA: Family medical leave act

Data Analyses

Statistical data analyses were completed using JMP^™ software (SAS Institute Inc.). Descriptive statistics and histograms were used for exploratory analyses and data visualization. Associations between variables were assessed using Pearson’s r (interval variables), Spearman’s rho (ordinal variables), point biserial correlations (categorical and continuous variables), and Chi square statistics (categorical variables). We also conducted ordinary least squares regression analyses on the outcome measures discussed below.

Correlation and regression analyses

Our three dependent variables of interest were (1) number of unmet specialty health/education services and adaptive equipment needs (here on referred to as unmet child healthcare service needs), (2) children’s functional dependence scores, and (3) negative impact of ASD-related issues on caregiver’s ability to work.

The unmet child healthcare service needs variable (Range: 0–17) was based on survey item #43 that asked about the child’s specialty health and education service and adaptive equipment needs. Caregivers rated their level of need for 17 health and education services related to case/medical management, allied health services, summer services, psychiatric/behavioral therapies and adolescent/adult needs (see Table 1). A total unmet child healthcare service needs score was calculated by summing the number of services for which caregivers indicated an unmet need, with higher scores indicating greater unmet service needs.

The functional dependence score (Range: 0–12) was calculated based on the survey question #38 where respondents were asked to rate their child’s level of independence, on a scale of 0–2 (0: independent, 1: performs with help, 2: not capable, on 6 functional activities including toileting, feeding, dressing, requesting, and indicating when he/she is hurt/sick (see Table 1 for details). A functional dependence score was calculated by summing individual scores on all 6 items, with lower total scores indicating greater independence and higher scores indicating greater dependence on others for daily function.

The negative impact of ASD-related issues on caregiver’s ability to work was assessed based on the survey question #34 that enquired about the effect of child’s autism diagnosis on the family’s ability to work. Note that the question aimed to probe the effects of care-providing experiences on caregivers’ ability to work. Several systemic and environmental factors including quality and quantity of social support systems, limited daycare options, inflexible nature of the job, lack of sensitive workplace policies, etc. may have influenced employment status of caregivers. Caregivers checked all options that applied to them and/or their spouse’s employment. We coded the variable using a 0–2 scale where 0 indicated no impact on work, 1 indicated a mild impact on work, and 2 indicated a severe impact on the ability to work (see Table 1 for details). If a family indicated a mild negative impact on employment for one caregiver and a severe impact on employment for the other caregiver, the family received a rating of 2 indicating severe overall impact on the family’s employment.

We conducted pairwise correlations between each dependent variable and other independent variables including apriori-identified variables based on our research hypotheses. Independent variables that were significantly correlated with the outcome variables were entered into the final regression model. Predictors entered into the regression models were unique and did not correlate with each other as assessed using pairwise correlations. We used R² values to assess model fit and report on significant regression models that have R² values ≥ 0.20 (i.e. combination of independent variables is able to explain at least 20% variance in the dependent variable).

We used ordinary least squares regression to model unmet child healthcare service needs. This model was run on a subset of families (N = 146) that indicated unmet child healthcare service needs. We also used ordinary least squares linear regression to predict functional dependence scores based on independent variables related to child characteristics and service needs/access. This model was run on a subset of the sample (N = 156) that was functionally dependent on others for activities of daily living (ADLs). For the negative impact of ASD-related issues on caregiver’s ability to work variable, an ordinal regression model was run; however, since the R² values were low (< 0.20), we are only reporting significant correlations between the dependent and independent variables.

Missing data for regression models

Data were missing from 1 family for the functional dependence variable and from 11 families for the level of ability to work variable. There were no missing data on the unmet child healthcare service needs variable.

Results

A total of 1120 surveys were distributed through school districts of which 13 were undeliverable to the requested address and were sent back to the sender. Of the surveys that were sent out, a total of 277 surveys were received back (25.02% response rate). Of these 277, 14 surveys were not included in these report due to the following reasons: missing data on > 60% survey questions, response to question on diagnosis of child left blank, or caregivers confirmed that the child had a diagnosis other than ASD (for example, Fragile X, Attention deficit hyperactivity disorder, Learning disability, Anxiety disorder, etc.). Therefore, a total of 263 surveys were analyzed for the purposes of this report. Below we present critical findings from the survey results.

Sample characteristics

Caregiver and child characteristics

Demographic characteristics of the 263 caregivers of children and youth with ASD who filled out the survey are presented in Table 2. Children and youth with ASD ranged between 3 and 24 years. Further details on their diagnoses, functional levels, and comorbidities are available in Tables 3 and 4.

Table 2:

Characteristics of caregivers of children and youth with ASD (Total N = 263)

Characteristic	N	%
Respondent
Mother	165	62.74
Father	30	11.41
Other (legal guardians, extended family)	68	25.86
Marital status
Married	195	74.15
Single	67	25.48
Missing data	1	0.38
Ethnicity
White	203	77.19
African American, Black, Negro	30	11.41
Hispanic, Latino, Spanish origin	12	4.56
Asian/Pacific Islander	5	1.90
Mixed	10	3.80
Missing data	3	1.15
Household income
Under 20,000	41	15.59
20,000–39,999	44	16.73
40,000–59,999	37	14.07
60,000–79,999	36	13.69
80,000–99,999	40	15.21
100,000+	59	22.43
Missing data	6	2.281
Education
Some high school/high school graduate	46	17.49
Some college/Vocation or technical school	74	28.14
College degree/Graduate degree	143	54.37

Table 3.

Comorbidities in children and youth with ASD (Total N = 263)

Additional comorbidities	N	%
Developmental delays	107	40.68
Attention deficit/Hyperactivity disorder	89	33.84
Learning disability	65	24.71
Anxiety disorder	53	20.15
Obsessive compulsive disorder	36	13.69
Intellectual disability	25	9.51
Other psychiatric diagnoses	40	15.21
Other medical diagnoses	27	10.27
Other developmental diagnoses	4	1.52

Other psychiatric diagnoses include bipolar disorder, conduct disorder, depression, oppositional defiance disorder; Other medical diagnoses include seizures, hearing impairment, blindness, central auditory processing disorder; Other developmental diagnoses include sensory dysfunction, developmental coordination disorder

Table 4:

Characteristics of children and youth with ASD (Total N = 263)

Characteristic	N	%
Gender: Male	220	83.65
Present age (years) Mean±SD (Range)	11.54±4.79 (2.83–24)
0–5 years	30	11.4
5.1–16 years	181	68.8
> 16 years	52	19.8
# of children with siblings	215	81.75
Primary diagnosis of child/youth
Autistic disorder	162	61.6
PDD-NOS	49	18.63
Asperger Syndrome	52	19.77
Additional co-morbid diagnoses present	194	74
1 co-morbidity	75	29.53
2 co-morbidities	54	21.26
3 or more co-morbidities	65	25.59
Age (months) of concerns Mean±SD (Range)	26.38±20.35 (1–172)
Age (months) of beginning EI services Mean±SD (Range)	26.29±21.11 (3–154)
Age (months) of diagnosis Mean±SD (Range)	47.08±32.69 (12–178)
Functional dependence in ADLs
Fully independent for ADLs	107	40.7
Dependent on others for ADLs	156	59.32
Missing data	1	0.38
Current living situation
Living with family or relatives	249	94.68
Residential/Foster home	2	0.76
Group home	2	0.76
Missing data	10	3.80
Most recent school-related transition child/youth made
Elementary to middle	49	18.63
Middle to high	50	19.01
High school to adult	9	3.422
Not applicable	123	46.77
Missing data	32	12.17

ADLs: Activities of daily living

Diagnosis and early intervention services

Within the first 2 years, around 64% caregivers in DE developed concerns for their child’s development and around 33% sought early intervention (EI) services. The age of diagnosis, was however higher, averaging at around 47 months (see Table 4 for details). A majority of the late diagnosed group received diagnoses of PDD-NOS or Asperger’s disorder that lead to more subtle delays that are detected at a later age compared to autism. Around 55% of families had to travel a maximum of 20 miles to receive a diagnosis, 22% travelled between 21–60 miles, whereas the remaining 23% families traveled over 60 miles to consult with specialists to receive their child’s diagnosis. Overall, around 40% of families had to seek specialists within neighboring states outside DE (Maryland, Pennsylvania, New Jersey, New York, and Virginia) to receive the diagnosis of ASD for their child. On an average, families reported visiting around 3 specialists prior to receiving an ASD diagnosis for their child (Mean(SD): 2.99(2.77)).

After receiving a diagnosis, 88% children received early services prior to school-based services with around 44% receiving 3 or more services and the remaining 44% receiving 1–2 services. Most common services included early intervention (52%), SLT (51%), child development watch, (i.e., DE state’s early intervention service) (46%) and PT/OT (45%) (see Table 5).

Table 5:

Services received/planned for child/youth and impact of ASD-related issues on the family

Characteristic	N	%
Early services received by the child/youth
Types of services received prior to school-based services
EI	138	52.47
SLT	135	51.33
Child Development Watch	121	46.01
PT	86	32.7
OT	33	12.55
Behavior/mental health services	31	11.79
Other like drama therapy, play therapy, etc.	15	5.703
None	30	11.41
Individualized Education Plan (IEP) at school
Yes	237	90.11
No	14	5.323
Don’t know	2	0.76
Missing data	10	3.802
Long term plans for child/youth
Arranged housing plans	16	6.084
Set up financial trust	45	17.11
Designated guardianship	48	18.25
Designated power of attorney	27	10.27
Currently developing plans	85	32.32
None	124	47.15
Other	2	0.76
Impact on family
Caregivers
Impact on ability to work
Not affected	42	15.97
Somewhat affected	116	44.11
Extremely affected	94	35.74
Missing data	11	4.183
Siblings
Diagnosis of ASD	26	9.89
Additional comorbidities present	151	57.41
Behavioral/psychiatric issues over past 6 months
Physically aggressive	54	20.53
Verbally aggressive	63	23.95
Seems anxious	102	38.78
Seems depressed	72	27.38
Complains about sibling with ASD	108	41.06
Conflicts with sibling with ASD	126	47.91
Conflicts with parents	104	39.54
Conflicts with peers	81	30.8
Conflicts with authority figures	39	14.83
Self-harming behaviors	12	4.56
Suicidal threats	10	3.80

EI: Early Intervention; PT: Physical therapy; OT: Occupational Therapy; SLT: Speech-language therapy

Impact of ASD-related issues on caregivers and siblings

Forty-four percent caregivers (respondent and/or spouses) had to make work-related modifications such as change work schedule/hours, change type of work/employer, or use family medical leave act to accommodate family needs, and 36% had to stop work voluntarily or due to termination/suspension from work (see Table 5). Among siblings, 10% had a diagnosis of ASD and close to 60% had additional co-morbidities such as ADHD, developmental delays, learning disability, etc. as well as psychiatric/behavioral issues (see Table 5 for details).

Service needs, satisfaction, and limitations accessing services

About 90% children had an Individualized Education Program (IEP) and 72% families expressed satisfaction with their child’s IEP (Table 5). Around 33% families reported that their children had received some type of disciplinary action at school, with around 27% receiving mild punishment including time-outs or being sent out of the classroom and around 6% reporting more serious action including detention, suspension, or expulsion. Along similar lines, 6% caregivers reported that their child’s behaviors resulted in interactions with the police. Almost 50% of caregivers reported not having any long term housing and guardianship-related plans for their child (Table 5).

The most commonly received specialty healthcare services are listed in Table 6A. For families receiving child healthcare services, we calculated proportions of caregivers who indicated that (1) the care-providers had the necessary skills to work with their child, and (2) the services were effective in meeting their child’s needs (see Table 6B). Caregiver ratings on satisfaction with care-providers and effectiveness of received services in meeting their child’s needs were strongly correlated (r=0.88) but varied across services (Table 6B). Satisfaction with care-providers and effectiveness of services were both rated high for OT and PT but were least for transition planning, relationship counseling, and sexual health training suggesting the need for improving adult-based services (Table 6B).

Table 6A:

Met & unmet needs for child healthcare and family support services^*

Services	Services received		Unmet service needs
	N	%	N	%
Child specialty health/education service and adaptive equipment
Social skills training	118	44.87	101	38.40
SLT	127	48.28	71	27
OT	100	38.02	67	25.48
Behavior intervention	99	37.64	62	23.57
Summer camp	35	13.31	51	19.39
One-on-one support	57	21.67	46	17.49
Mental health counseling	52	19.77	38	14.45
Vocational training	39	14.83	37	14.07
Sexual health training	14	5.32	36	13.69
Case management	69	26.24	30	11.41
Summer school	138	52.47	30	11.41
Transition planning from pediatric to adult healthcare	8	3.04	30	11.41
PT	61	23.19	28	10.65
Relationship counseling	7	2.66	27	10.27
Neurology services	84	31.93	25	9.51
Medication management	80	30.42	15	5.70
Mobile therapy	13	4.94	13	4.94
Family services
Respite care	50	19.01	64	24.33
Parent support groups	35	13.31	64	24.33
Sibling support groups	12	4.56	57	21.67
Babysitting	27	10.27	55	20.91
Family counseling	16	6.08	55	20.91
Parent mental health counseling	22	8.37	45	17.11
Weekend childcare	10	3.80	33	12.55
Sibling mental health counseling	13	4.94	31	11.79
Afterschool care	30	11.41	28	10.65

PT: Physical therapy; OT: Occupational Therapy; SLT: Speech-language therapy

^*Table is sorted in descending order of unmet service needs

Table 6B:

Proportion of caregivers that indicated satisfaction with care-providers and optimum effectiveness of received child healthcare and family support services^*

Services received	Satisfaction with care-providers (%)	Service effectiveness (%)
Child specialty health/education service and adaptive equipment
Medication Management	84.78	85.71
Neurology Services	86.73	84.38
One-to-one Support (e.g. TSS)	84.71	83.75
Behavior Intervention	83.92	83.33
OT	91.95	82.43
PT	91.25	81.93
Summer School/ESY	85.81	81.88
Social Skills Training	88.82	79.63
SLT	89.89	77.49
Vocational Training	82.00	77.36
Summer Camp	84.91	75.93
Case Management	83.91	72.94
Mobile Therapy	80.00	68.18
Mental Health Counseling	80.41	67.82
Transition Planning from Pediatric to Adult Healthcare	79.17	55.56
Relationship Counseling	64.71	50.00
Sexual Health Training	61.90	47.37
Family services
Respite Care (short term care)	93.02	75.56
Parent Support Groups	83.67	74
Parent Mental Health Counseling	81.25	71.88
Babysitting	84.31	71.43
Family Counseling	71.43	70.37
Afterschool Care	74.42	62.5
Weekend Childcare	77.78	60
Sibling Support Groups	73.91	54.17
Sibling Mental Health Counseling	75	52.38

PT: Physical therapy; OT: Occupational Therapy; SLT: Speech-language therapy

^*Table is sorted in descending order of service effectiveness ratings by caregivers

Around 55% families reported having unmet child healthcare service needs, with over 30% reporting 4 or more unmet needs (see Table 7B). We also stratified the services received and unmet needs of families relative to child healthcare and family support services by age (see Tables 7A & 7B). Our data suggest that the average number of unmet needs increased with age for child healthcare services (see Table 7A). We also found differences in the types of services that caregivers prioritized for their children especially around the transition from childhood to adolescence and adulthood. Across all age groups, we found a common trend of greatest caregiver-identified unmet needs for services that were also most commonly received by individuals in the specified age range (see Table 7A). These findings suggest that although services to address crucial, age-appropriate needs of children were available to families, the existing levels of received services were inadequate to meet the families’ needs. For instance, it is possible that the intensity (sessions/week or duration/session) of available services may have been inadequate to completely satisfy the existing needs of families. In children between 3–7 years, caregivers expressed greatest unmet needs for SLT, social skills training, OT, behavioral intervention and summer camp. Along the same lines, in the 7–12 year age group, families expressed greatest unmet needs for social skills training, behavioral intervention, SLT, OT, and summer camp. In the 12–18 year olds, greatest unmet needs were expressed for social skills training, sexual health training, SLT, OT, and vocational training. Lastly, in the 18–24 year age range, families indicated greatest unmet needs for social skills training, vocational training, SLT, transition planning, behavioral intervention, OT, and relationship counseling. Overall, unmet needs were uniformly expressed by families across all age groups for social skills training and SLT; at younger ages, OT, summer camp, and behavioral interventions were also prioritized versus with the transition to adolescence and adulthood, families expressed unmet needs for vocational training, sexual health training, transition planning, and relationship counseling.

Table 7B:

Unmet healthcare and family service needs of children and youth with ASD

# of unmet service needs	Specialty health/education service and adaptive equipment										Family services
	Total sample (N=263)		3–7 years (N=50)		7.1–12 years (N=104)		12.1–18 years (N=81)		18.1–24 years (N=28)		Total sample (N=263)		3–7 years (N=50)		7.1–12 years (N=104)		12.1–18 years (N=81)		18.1–24 years (N=28)
	N	%	N	%	N	%	N	%	N	%	N	%	N	%	N	%	N	%	N	%
0	117	44.49	24	48	49	47.12	33	40.74	11	39.29	138	52.47	25	50	57	54.81	39	48.15	14	50
1–3	64	24.33	15	30	26	25	18	22.22	5	17.86	74	28.14	15	30	22	21.15	28	34.57	9	32.14
4–7	52	19.77	8	16	16	15.38	21	25.93	7	25	45	17.11	10	20	20	19.23	13	16.05	5	17.86
>7	30	11.41	3	6	13	12.5	9	11.11	5	17.86	6	2.28	0	0	5	4.81	1	1.23	0	0

Table 7A:

Met & unmet needs for child healthcare and family support services stratified by age

	3–7 years (N = 50)				7.1–12 years (N =104)				12.1–18 years (N = 81)				18–24 years (N = 28)
Services	Services received		Unmet service needs		Services received		Unmet service needs		Services received		Unmet service needs		Services received		Unmet service needs
	N	%	N	%	N	%	N	%	N	%	N	%	N	%	N	%
Child specialty health/education service and adaptive equipment
Mental Health Counseling	8	16	4	8	16	15.38	15	14.42	18	22.22	16	19.75	10	35.71	3	10.71
SLT	29	58	15	30	54	51.92	25	24.04	35	43.21	22	27.16	9	32.14	9	32.14
OT	26	52	13	26	46	44.23	25	24.04	23	28.4	22	27.16	5	17.86	7	25
PT	24	48	5	10	21	20.19	14	13.46	14	17.28	6	7.407	2	7.143	3	10.71
Social Skills Training	26	52	15	30	49	47.12	38	36.54	33	40.74	34	41.98	10	35.71	14	50
Behavior Intervention	21	42	12	24	35	33.65	28	26.92	36	44.44	14	17.28	7	25	8	28.57
One-to-one Support (e.g. TSS)	11	22	7	14	22	21.15	19	18.27	16	19.75	14	17.28	8	28.57	6	21.43
Mobile Therapy	3	6	2	4	4	3.846	10	9.615	5	6.173	0	0	1	3.571	1	3.571
Case Management	9	18	4	8	27	25.96	14	13.46	22	27.16	7	8.642	11	39.29	5	17.86
Neurology Services	16	32	5	10	40	38.46	10	9.615	21	25.93	8	9.877	7	25	2	7.143
Medication Management	6	12	1	2	38	36.54	6	5.769	27	33.33	4	4.938	9	32.14	4	14.29
Summer Camp	3	6	10	20	13	12.5	24	23.08	17	20.99	12	14.81	2	7.143	5	17.86
Summer School/ESY	30	60	4	8	52	50	18	17.31	45	55.56	3	3.704	11	39.29	5	17.86
Sexual Health Training	1	2	0	0	2	1.923	9	8.654	10	12.35	24	29.63	1	3.571	3	10.71
Transition Planning from Pediatric to Adult Healthcare	0	0	2	4	1	0.962	6	5.769	6	7.407	13	16.05	1	3.571	9	32.14
Vocational Training	0	0	2	4	3	2.885	5	4.808	25	30.86	20	24.69	11	39.29	10	35.71
Relationship Counseling	1	2	0	0	3	2.885	7	6.731	3	3.704	13	16.05	0	0	7	25
Mean(SD) of total number of met and unmet needs	4.96(2.67)		2.02(2.98)		4.85(3.25)		2.63(3.71)		5.23(3.13)		2.86(3.25)		4.68(3.07)		3.61(4.10)
Family services
Respite Care (short term care)	9	18	12	24	18	17.31	27	25.96	19	23.46	17	20.99	4	14.29	8	28.57
Babysitting	5	10	8	16	9	8.654	30	28.85	10	12.35	13	16.05	3	10.71	4	14.29
Afterschool Care	4	8	4	8	15	14.42	15	14.42	7	8.642	7	8.642	4	14.29	2	7.143
Weekend Childcare	1	2	7	14	2	1.923	12	11.54	5	6.173	7	8.642	2	7.143	7	25
Family Counseling	1	2	9	18	7	6.731	23	22.12	8	9.877	16	19.75	0	0	7	25
Sibling Support Groups	3	6	8	16	3	2.885	26	25	6	7.407	17	20.99	0	0	6	21.43
Sibling Mental Health Counseling	1	2	3	6	5	4.808	13	12.5	6	7.407	13	16.05	1	3.571	2	7.143
Parent Support Groups	6	12	10	20	12	11.54	26	25	10	12.35	23	28.4	7	25	5	17.86
Parent Mental Health Counseling	5	10	9	18	8	7.692	18	17.31	7	8.642	15	18.52	2	7.143	3	10.71
Mean(SD) of total number of met and unmet needs	0.7(1.05)		1.4(1.87)		0.76(1.25)		1.83(2.61)		0.96(1.73)		1.58(2.05)		0.82(1.47)		1.57(1.95)

PT: Physical therapy; OT: Occupational Therapy; SLT: Speech-language therapy

We also found that with increasing age the proportion of families that expressed 4 or more unmet needs for child healthcare services increased (see Table 7B). Moreover, around 51% caregivers faced limitations in accessing child healthcare services including provider-related limitations for instance, shortage of services providers or providers not seeing individuals with ASD (37%), cost-related barriers (21%), transportation and scheduling barriers (16%), and limitations due to the child’s behavioral problems (14%).

The most commonly received family support services included respite care, parent support groups, afterschool care, and babysitting help and least common services were sibling support groups and weekend care (Table 6A). Among families receiving family support services, caregiver ratings on effectiveness of services and satisfaction with care-providers were moderately correlated (r=0.67). Satisfaction with care-providers and effectiveness of services were both highest for respite care, and parent support groups and lowest for sibling support groups, sibling mental health counseling, and family counseling (Table 6B).

Around 48% families indicated unmet needs for family services (Tables 6A and 7B), with greatest needs for respite care, parent/sibling support groups, family counseling, and babysitting help (Table 6A). Compared to child healthcare services, fewer families received family support services (Tables 6A and 7A). Similar to the child needs data, unmet family needs were greatest for services that families received most commonly (respite care, parent support groups, and babysitting help) suggesting that existing services were not able to completely meet family needs. Moreover, across the different age groups, unmet needs were consistently expressed by families for respite care. The other family-oriented services that were equally prioritized across multiple age groups included parent support groups, sibling and family counseling, and weekend or babysitting help. Around 50% of families reported facing limitations in accessing family support services including provider-related limitations (36.12%), transportation/scheduling limitations (19.01%), cost-related limitations (18.25%), and child behavior-related limitations (11.41%).

An overall comparison between services indicates that a larger proportion of families received child healthcare services (Range: 3–53%) compared to family support services (Range: 4–19%) (see Tables 6A and 7A). However, interestingly, caregivers indicated equally high unmet needs for child healthcare and family support services (Table 6A and 7B).

Correlation and Regression Models

Table 8 reports correlations between dependent and independent variables.

Table 8:

Correlations between all variables.

	CT	ET	AHI	PE	AD	nCD	nPSS	Age	AEI	ADx	ACon	LAW	FD	nUHSN	nLHS	nUFSN	nLFS
CT	1.00	0.08	−0.05	0.00	−0.12	0.11	−0.14	0.10	0.27*	0.19*	0.27*	−0.17*	−0.09	−0.01	−0.03	−0.06	−0.06
ET		1.00	−0.21*	−0.09	0.11	−0.09	0.14	−0.17*	−0.11	−0.09	0.07	0.01	0.05	0.15	0.07	0.08	−0.01
AHI			1.00	0.51*	0.08	−0.10	−0.03	0.16	−0.03	−0.08	−0.05	−0.18*	−0.10	0.11	−0.01	0.03	−0.04
PE				1.00	−0.07	0.00	0.03	0.15	0.01	−0.06	−0.01	−0.08	−0.13	0.11	0.17*	0.13	0.08
AD					1.00	−0.19*	0.20*	−0.08	−0.25*	−0.54*	−0.35*	−0.07	0.36*	−0.09	−0.07	−0.09	0.03
nCD						1.00	0.18*	0.11	0.04	0.19*	−0.05	0.14	0.07	0.23*	0.23*	0.19*	0.24*
nPSS							1.00	−0.27*	−0.42*	−0.26*	−0.28*	0.03	0.26*	0.26*	0.13	0.16	0.19*
Age								1.00	0.27*	0.27*	0.26*	0.01	−0.23*	0.17*	0.12	−0.05	0.08
AEI									1.00	0.38	0.75*	−0.10	−0.31*	0.05	−0.08	−0.02	−0.01
ADx										1.00	0.53*	−0.11	−0.33*	0.05	0.02	−0.10	−0.15
ACon											1.00	−0.16	−0.36*	−0.01	−0.07	−0.06	−0.19*
LAW												1.00	0.07	0.13	0.10	0.22*	0.21*
FD													1.00	0.09	0.16*	0.19*	0.29*
nUHSN														1.00	0.46*	0.41*	0.43*
nLHS															1.00	0.25*	0.63*
nUFSN																1.00	0.47*
nLFS																	1.00

CT = Caregiver type; ET = Ethnicity type; AHI = Annual household income; PE = Parent’s highest level of education; AD = Autistic Disorder/Autism diagnosis; nCD = Number of total current diagnosis; nPSS = Number of prior services before school-based services; Age = Present age in years; AEI = Age of beginning EI services; ADx = Age of diagnosis; ACon = Age when concerns were first felt by caregivers; LAW = Parent’s level of ability to work; FD = Child’s current level of functional dependence; nUHSN = Number of unmet health service needs; nLHS = Number of limitations in accessing health services; nUFSN = Number of unmet family service needs; nLFS = Number of limitations in accessing family support services. Pearson’s product-moment, Spearman’s rho, and point biserial correlations were used to identify associations between variables.

^*indicates correlations with p < 0.05.

Predictors of unmet child healthcare service needs

The regression model used the following predictors: present age of the child (in years), number of prior early services received (range: 0–5), number of total limitations to accessing child healthcare services (range: 0–9), and total number of unmet family service needs (range: 0–9) (see calculations in Table 1). All predictors were positively related to the dependent variable (Table 9). The adjusted R² for the model was 0.35 suggesting that around 35% variance in unmet child healthcare needs was explained by the combination of our independent variables. Overall, families with older children who received multiple early services prior to school-based services, who faced greater limitations in accessing child healthcare services, and who also reported higher unmet family service needs were more likely to have greater unmet child healthcare service needs.

Table 9:

Parameter estimates from regression model on unmet specialty child healthcare service needs.

Variables	B	Standard error	p value	95% Confidence interval
Intercept	−0.160	0.846	0.851	−1.832 to 1.513
Present age of child (years)	0.147*	0.051	<0.001	0.046 to 0.248
# of prior early services received	0.557*	0.177	0.002	0.207 to 0.907
# of limitations in accessing child health services	0.577*	0.144	<0.001	0.291 to 0.862
Total # of unmet family service needs	0.453*	0.106	<0.001	0.244 to 0.662

^*significant at p<0.05

Predictors of functional dependence levels of children

We identified independent variables that were significantly predictive of functional scores (Mean(SD): 3.99(2.53)) in functionally dependent children. The predictors included, child’s autism diagnosis (coded as 0 = Not autistic disorder i.e. could be Asperger’s or PDD-NOS, 1 = confirmed autism diagnosis), age of concern (in months), and number of limitations in accessing child healthcare services (range: 0–9). All 3 predictors were significantly related to the outcome measure (see Table 10). The adjusted R² value was 0.21 suggesting that the combination of independent variables was able to explain 21% variance in the dependent variable. Overall, children with greater diagnostic severity, whose caregivers developed concerns at an earlier age, and who faced greater barriers in accessing child healthcare services were more likely to be functionally dependent in basic ADLs.

Table 10:

Parameter estimates from regression model of children’s functional dependence scores

Variables	B	Standard error	p value	95% Confidence interval
Intercept	3.037	0.430	<0.001	2.186 to 3.888
Autism diagnosis [0.00] [1.00]	−0.800* 0.800	0.218	<0.001	−1.230 to −0.369
Age at which concern felt (months)	−0.033*	0.011	0.002	−0.055 to −0.012
Number of limitations in accessing child healthcare services	0.254*	0.115	0.03	0.027 to 0.482

^*significant at p<0.05

Negative impact of ASD-related issues on caregiver’s ability to work

Although the ordinal regression model was unable to explain significant variance in the dependent variable, we report independent variables that showed significant correlations with the outcome measure. Caregiver type (r=−0.17, p=0.04) and annual household income (r=−0.18, p=0.04) were negatively correlated with caregiver’s ability to work (see Table 8). Mothers were more likely to report a perceived adverse impact on their and/or their spouse’s ability to work compared to fathers or other caregivers. The impact of ASD-related issues on caregiver employment was lower in families with higher annual household incomes. On the other hand, number of unmet family service needs (r=0.22, p=0.01) and limitations in accessing family services (r=0.21, p= 0.01) were positively correlated with adverse impact on caregiver’s ability to work.

Discussion

For the state of DE, this is the first survey-based study to systematically document the needs of families of children and youth with ASD. The only other studies in the US that reported representative statewide data from needs assessment surveys in individuals with ASD included reports from Pennsylvania (Schott et al., 2020; Turcotte et al., 2016), Tennessee (Mello et al., 2016), Oregon (Dudley et al., 2019; Lindly, et al., 2020; Martin et al., 2015), and Kentucky (Murphy & Ruble, 2012; Ruble & McGrew, 2007). Our results are in line with findings from some of these other statewide reports and will be discussed in detail in the sections below pertaining to our research questions and findings. Within the state of DE, our survey results identified crucial family-identified needs and gaps in the service system. These data triggered a series of iterative phases at the state level that ultimately led to the creation of a statewide strategic plan for action in ASD, which in turn led to (1) the development of a statewide legislative body to monitor progress on initiatives instituted to address the identified gaps and (2) a new, centralized, statewide training and technical assistance center to provide training for professionals working with individuals with ASD and resources/information to families, schools, and service providers pertaining to evidence-based practice in ASD. We will discuss in detail the implications of the survey results in guiding action in DE in the subsequent sections.

Identification of current healthcare and support service needs for children/youth with ASD and their families

Around 55% caregivers in DE reported unmet child healthcare needs. We found that the greatest unmet needs were for social skills training and SLT across all age groups and for behavioral interventions in younger age groups, all of which are in fact the most commonly received interventions by children with ASD (Farmer et al., 2014; Brown et al., 2010; Green et al., 2006; McLennan et al., 2008; Thomas et al., 2007). As we discussed previously, it is possible that the provided services may not have been enough in fully meeting the needs of children and families. For instance, the dosage of the received services may have been inadequate or a significant shortage of providers (i.e., 37% families reported provider-related limitations) may have limited services received by families leading to residual unmet needs. Over the past several years, provider shortage-related gaps have been addressed in DE through the statewide training and technical assistance center, i.e. the Delaware Network for Excellence in Autism and the Leadership Education in Neurodevelopmental Disabilities program that respectively train professionals and entry-level clinicians across the state in providing evidence-based autism services and family-centered care. Further details of these initiatives are provided below within the section discussing strategic initiatives in DE.

Our survey findings are in line with Farmer et al. (Farmer et al., 2014) who reported that around 63% families of children with ASD had at least one unmet need for services including behavioral therapy, communication aids/devices, OT/PT, SLT, and mental health services. State-wide data from Oregon also indicated that among families of children with special healthcare needs, a majority of caregivers reported difficulties in accessing autism-specific services including Applied Behavior Analysis, and health professionals trained to work with children with ASD (Lindly, et al., 2020; Martin et al., 2015). Similarly, results from 96 families in Kentucky suggested that social skills training, SLT, and behavior management were the most highly prioritized and requested services by caregivers of children with ASD; in fact behavioral interventions were associated with best overall child-related outcomes in these data (Murphy & Ruble, 2012; Ruble & McGrew, 2007). In another Irish study with pre-school children with ASD, parents expressed the greatest service needs for SLT, educational assistance, respite care, and OT (Cassidy et al., 2008). Our data are also supported by other reports that suggest that despite greater service utilization, families of children with special needs are more likely to experience unmet health service needs compared to families without children with special needs (Kuo et al., 2011; Lindly, et al., 2016; Parasuraman et al., 2018; Schieve et al., 2012; Vohra et al., 2014).

Our study also suggested an increase in unmet child healthcare needs with growing age especially during adolescence and the transition into adulthood. Our findings are in line with other studies reporting that while younger children and adolescents receive services through the school system, upon leaving the school system, access to services is severely limited and individuals with ASD experience a “service cliff” (Havlicek et al., 2016; Shattuck et al., 2011a; Taylor & Henninger, 2015). Based on data from a large state-wide PA autism survey, Turcotte et al., (2016) found that with an increase in age, individuals with ASD reported lower service use and greater unmet need for services including SLT, social skills training, OT, medication management and one-on-one support (Turcotte et al., 2016). Similarly, adults with ASD require greater services in the areas of vocational or employment services, functional skill services, and mental and behavioral health services (Schott et al., 2020). Similarly, we also found that with a transition to adolescence and adulthood, caregivers identified unmet needs for age-appropriate services including vocational training, transition planning, sexual health training, and relationship counseling. Despite these high levels of service needs, treatment options for young adults are far more limited compared to children (Bishop-Fitzpatrick et al., 2013). In fact, adult living is one of the key priority areas that are currently being addressed in DE through a statewide strategic plan developed directly in response to the survey data. Overall data from our and other reports suggest that families continue to report significant unmet needs relative to services aimed at addressing core impairments of ASD including social skills, communication, and adaptive behavior across the lifespan.

Predictors of unmet child and youth specialty health and education service and adaptive equipment needs

In line with our hypotheses, we found that unmet child and youth needs were positively associated with and predicted by the participant’s present age, prior services received, limitations faced in accessing healthcare services, and unmet family support service needs. Older children are likely to have greater unmet service needs. As discussed above, although ASD is a lifespan disorder, there is a clear emphasis on early detection and intervention as well as school-based services; however, services plateau and further decline as children become adolescents and adults (Cadman et al., 2012; Shattuck et al., 2011b; Smith & Anderson, 2014; Taylor & Henninger, 2015), possibly contributing to greater unmet service needs. On the other hand, younger children access greater number of services and in fact have better outcomes than older children with ASD (Bromley et al., 2004; Ruble & McGrew, 2007). In terms of prior services, children with more severe symptoms may need and receive multiple early services prior to school-based services. Despite greater service utilization, children with complex and challenging symptoms may continue to experience greater service needs, which may remain unmet throughout childhood and adolescence.

Caregivers reported multiple limitations in accessing child and youth services including provider-, cost-, transportation-, and child/youth behavior-related barriers. Other studies have also identified problems finding providers, getting referrals for services, and financial issues as key barriers in accessing quality healthcare services in ASD (Chiri & Warfield, 2012; Kogan et al., 2008; Krauss et al., 2003; Siklos & Kerns, 2006). A large national sample of children with special needs concluded that families were more likely to report provider inability to treat children with ASD as a major barrier in accessing therapeutic/mental health services. Moreover, across all disability groups, cost-related barriers were positively associated with unmet needs for core healthcare services (Chiri & Warfield, 2012). Parents also frequently requested support in handling their child’s difficult behaviors, including information on teaching strategies and behavior management techniques (Ellis et al., 2002). Overall, there is a clear need to address service access barriers to effectively alleviate unmet child healthcare needs in ASD.

Caregiver-identified, family support service needs were positively predictive of unmet child healthcare needs. The diagnosis of ASD negatively impacts the entire family (Brown et al., 2010; Farmer et al., 2004; Galpin et al., 2018; Gupta & Singhal, 2005; Lindly, et al., 2016). Greater parenting stress/fatigue and higher levels of psychological and emotional problems in siblings negatively impacts family well-being and quality of life, which in turn can lead to an unfavorable prognosis and an exacerbation of symptoms in the child/youth with ASD (Baker et al., 2011; Dunst et al., 2007; Houser et al., 2014; Kiami & Goodgold, 2017; Osborne et al., 2008). Therefore, there is an increasing push towards shifting from a child-centric system to a family-centered model of care where services are tailored to address the unique needs of both children and youth with ASD and their families (Cheak-Zamora & Farmer, 2015; Farmer et al., 2014; Galpin et al., 2018; Gupta & Singhal, 2005). In fact based on these data, the DE Division of Prevention and Behavioral Health has initiated an evidence-based, family support/care coordination approach called the Autism Care Team based on the medical home model and reimbursed through Medicaid to provide evidence-based family support services and behavioral interventions to address needs of children with ASD and their families.

Predictors of functional dependence levels of children and youth with ASD

A diagnosis of autistic disorder, lower age of initial caregiver concerns, and greater limitations in accessing child healthcare services were all significantly predictive of greater dependence on caregivers for daily function. Both a diagnosis of autistic disorder and age of first concerns are indicative of autism severity. A diagnosis of Asperger’s syndrome or PDD-NOS versus autism as well as a later age of concern is likely to manifest in children with less severe symptoms/impairments possibly contributing to lower dependence on caregivers for ADLs (Emerson et al., 2016; Fountain et al., 2011).

Lastly, greater limitations in accessing child services was predictive of greater functional dependence levels. Our regression on unmet healthcare service needs suggested that limitations in child healthcare service access was also positively predictive of unmet child healthcare needs. Greater limitations accessing services may possibly lead to persistent, unmet needs for healthcare services that might ultimately negatively impact functional skills in children and youth with ASD. Similar to our findings, an evaluation of unmet needs of 101 school-age children with ASD revealed a negative relationship between children’s functional independence and perceived unmet needs for healthcare services (Brown et al., 2011). Based on these data, Brown et al. (2010, 2011) proposed a theoretical framework for determinants of unmet needs. They suggested that poor adaptive skills, greater challenging behaviors, and low functional independence are associated with greater unmet service needs. Children who are more functionally dependent have an overwhelmingly large number of service needs that may remain unmet in a resource-limited service system. This sets up a negative cycle where children are not able to make improvements in functional skills due to lack of effective therapeutic services and their service needs keep increasing (Brown et al., 2010; Brown et al., 2011).

Impact of ASD-related issues on caregiver’s ability to work

Around 80% caregivers reported a negative impact of ASD-related issues on their employment, with 36% having to stop work completely. A host of environmental factors may impact caregivers’ employment including lack of adequate social supports, heightened caregiving responsibilities associated with the severity of the diagnosis, and lack of flexible and accommodative workforce policies. For instance, parents of children with ASD spend 10 or more hours weekly, providing and coordinating child care (Kogan et al., 2008). Caregivers are also more likely to report financial, employment, and time-related burden associated with caring for their children (Kogan et al., 2008; Vohra et al., 2014). In fact parents of children with ASD are 7 times more likely to report childcare-related employment decisions (Montes & Halterman, 2008).

Our analyses suggested that caregiver type, annual household income, number of unmet family service needs, and limitations accessing family support services were correlated with caregiver’s ability to work. Specifically, mothers were more likely to perceive an adverse impact of their child’s diagnosis on their family’s ability to work. Gender-related differences exist in caregiving roles and caregiver burden in ASD, where mothers are likely to report greater unmet needs related to their child’s development, family impact, need for social-emotional support, and planning for their child’s future care compared to fathers (Hartley & Schultz, 2015).

Higher annual household income was associated with a lower adverse impact on caregiver employment. Perhaps, having a higher annual income may allow families to access child support including respite and babysitting/afterschool care that may reduce the need for work schedule disruptions related to caregiving responsibilities. Increased household income has been predictive of lower unmet service needs, where wealthier families are able to utilize their economic advantage to gain access to critical services to fulfill their family needs (Hodgetts et al., 2015; Thomas et al., 2012).

Lastly, family service variables were positively associated with a negative impact on caregiver employment. Picture a parent of a child with ASD having unmet needs/access issues relative to child care requiring them to devote more time and energy caring for their child. This in turn would require significant adjustments to the parent’s work schedule and perhaps cost them their job if their needs remain unfulfilled, adding to the family’s economic burden (Lindly et al., 2016). Unmet needs for formal support/counseling services can negatively impact parents’ self-efficacy, ability to cope, and well-being ultimately worsening the financial, psychological, and employment-related adverse impact on the family (Galpin et al., 2018; Kuhn & Carter, 2006). In fact, caregivers reported that respite care is the most effective service that is associated with favorable outcomes for families of children with ASD (Ruble & McGrew, 2007). Similarly, behavioral support services and parent support groups were the most recommended yet most needed services as identified by a statewide survey of caregivers in rural and urban Tennessee (Mello et al., 2016). Overall several factors associated with the child’s ASD severity as well as support systems and workplace policies may impact workforce participation of caregivers of children and youth with ASD.

Implications for a family-centered model of care in ASD

Although our design did not allow for testing causal hypotheses, we explored relationships between child-, family-, and service-related variables in children and youth with ASD. Our findings support research that calls for a holistic, family-centered model of care that addresses needs of both children/youth and their families (Cheak-Zamora & Farmer, 2015; Freedman & Boyer, 2000; Galpin et al., 2018; Kuo et al., 2011; Russa et al., 2015). This is critical since families of children with DD are less likely to recognize the need for family support services compared to child health services (Lindly, et al., 2016), as was also clearly reflected in our service utilization data for child healthcare and family support services. In fact, less than one-third of parents of children with ASD report receiving coordinated care and less than one-half report receiving family-centered care (Farmer et al., 2014). Moreover, families that do not receive family-centered support services are more likely to report unmet child specialty healthcare needs (Farmer et al., 2014).

Addressing family service needs is crucial since it is significantly predictive of unmet child needs. Families with unmet needs relative to child care and counseling/support services are likely to experience more stress and face greater employment-related disruptions and financial burden. Higher caregiver burden and lower competence will ultimately negatively affect their ability to care for their child leading to growing unmet child healthcare needs. Unmet needs and access barriers for child healthcare services in turn are positively predictive of children’s functional dependence in ADLs. Taken altogether, there is a clear need to build capacity in families of children with ASD through support services that will ultimately improve outcomes for the child/youth and their entire family.

Initiatives in the state of Delaware based on the statewide needs assessment survey

At the time the survey was conducted, the growing prevalence of ASD both nationwide as well as within the state of DE presented significant challenges for schools, social agencies, hospitals, clinics, and families across DE. For instance, the percentage of students classified with autism as a portion of all students in special education increased from 2.4% in 2004–2005 to 4.9% in 2010–2011 to 7.2% in 2014–2015 to 9% in 2017–2018 (Data request from Delaware Department of Educational, February 2019). Specifically, there were significant challenges faced by families relative to early screening, accurate diagnosis, high-quality, evidence-based, and affordable services, family-centered care, and future planning for their children. At the time of the survey, DE had no autism specialty clinic, statewide autism resource center, care coordination, training programs for individuals working with children and youth with ASD, or reimbursement for different autism-related services/therapies. Autism Delaware was the only autism-specific advocacy organization supported by private fundraising efforts that provided clinical services and support to families with children with ASD. The growing prevalence of ASD and the significant struggles of families facing the daunting task of service coordination prompted CDS to undertake a statewide needs assessment of families with children with ASD to collect baseline statewide data on screening, diagnostic and referral services, early intervention, healthcare and family support services through childhood, and significant barriers and limitations identified by families while caring for their children.

The results of the survey helped identify critical need gaps in the autism diagnosis and service system in DE. This in turn guided further structured interviews and focus groups with parents and ultimately a large, statewide summit of all stakeholders involved with ASD including families and self-advocates, hospitals and health professionals, state agencies, professional organization, and educational institutions (schools and universities) to identify challenges faced by individuals with ASD in DE and possible solutions for the same. These series of activities and workgroup deliberations ultimately guided the development of a statewide, strategic plan called The Blueprint for Collective Action. The Blueprint is a collaborative plan developed by the now-unified community of agencies, organizations, and families of individuals with ASD with the ultimate goal of improvement of the care system of ASD in DE across 3 priority areas – education (early intervention and postsecondary), medical/mental health, and adult living. It was developed as a response to families identifying through the survey, the lack of a statewide network of trained ASD service providers and the lack of a single entity responsible for ensuring high-quality, individualized, coordinated care across multiple settings (i.e., schools, community, hospitals) for families across the lifespan. The Blueprint therefore included long-term goals, objectives and activities related to diagnosis and follow-up care, coordinated care, reduction of barriers for families, and improvement of outcomes across the lifespan through better services, more fluid and transparent systems, and effective training models.

As part of the Blueprint, 2 main initiatives were undertaken to accomplish the activities within the plan: (1) creation of an Interagency Committee for Autism (ICA), a senate-approved legislative body of state-level decision makers (including key stakeholders and a group of parents), tasked with implementation of the goals and activities identified within the Blueprint, and (2) creation of a new, statewide training and technical assistance center called the Delaware Network for Excellence in Autism (DNEA) housed in CDS charged with building capacity across services and systems in DE. The DNEA represents a centralized resource involving a network of organizations with expertise in evidence-based practice that can provide training and technical assistance to professionals across the state in the following priority areas: school-based services and early intervention, medical screening/diagnosis, school evaluation, and mental health. With the need gaps in the ASD service system clearly identified and improvement areas objectively documented with associated tangible outcomes and activities, the state of DE was able to implement many specific initiatives to achieve these outcomes. Below we provide a short description of these initiatives and their impact on addressing some of the key lacunae identified by the needs assessment survey.

In 2016, DE was awarded the Leadership Education in Neurodevelopmental Disabilities (LEND) grant from HRSA that enables training of entry-level clinicians in autism-related interdisciplinary services, family-centered care and cultural/linguistic competence. Led by CDS in partnership with UD College of Health Sciences and Nemours/AI duPont Hospital for children, the largest specialty pediatric healthcare provider in DE, in 2019 itself, the DE LEND program trained 400 students and trainees through short-, medium- and long-term training programs. The LEND faculty including the last two authors represent autism experts in the state and also conduct trainings in the community in collaboration with DNEA.

At the same time, CDS, Autism Delaware and their partners were also awarded another 3-year grant from HRSA that funded innovation and expansion of the early childhood evaluation and intervention system in DE through the Building bridges initiative. The goal of this initiative was to regularly bring together early childhood stakeholders (state agencies, school districts, medical practitioners, family advocacy organizations, and an Autism Care Team (ACT) family council that brought in family perspectives) to make radical changes in DE’s early childhood system. This systematic effort has led to (1) training programs for clinicians in the use of the early screening tool, Modified Checklist for Autism in Toddlers, Revised (MCHAT-R) (Robins et al., 2001), and (2) the establishment of clear pathways of coordinated care that connect families of children recently diagnosed with ASD with early intervention services and help families navigate the complex diagnostic and service systems as well as be involved in the decision-making process for care of their child with ASD. These systems were piloted in the Sussex county of DE and continue to be expanded to other counties in DE. The MCHAT-R (Robins et al., 2001) has now been successfully integrated into primary care clinics through the entire Nemours electronic health record system which allows systematic screening of children at risk for ASD and subsequent referrals to Child Development Watch (i.e. DE’s birth-to-three system) and specialty care settings for further evaluations and interventions. The LEND/Nemours psychology post-doctoral fellows regularly conduct diagnostic evaluations for ASD within the state thus formalizing a process for early screening and diagnosis of ASD as part of Child Development Watch. Moreover, in 2019, as part of Building Bridges, several school districts and community providers were trained in Project ImPACT (Improving Parents as Communication Teachers), a parent-mediated, early intervention model (Ingersoll & Dvortcsak, 2009; Stadnick et al., 2015). It is an evidence-based, naturalistic, developmental intervention focused on empowering parents to support their child’s social communication development in children between 18 months to 8 years (Ingersoll & Dvortcsak, 2009; Stadnick et al., 2015).

As our survey data indicated there, around 50% caregivers reported unmet needs for family support services. Therefore, in 2015, the DE Division of Prevention and Behavioral Health (DPBHS), began a new approach to family support/care coordination for children with mental health diagnosis through their system of care grant. This evidence-based approach called Family Peer Support Services (FPSS) was included in the DE Medicaid State plan in 2016. A new model of care coordination in line with the medical home concept called the Autism Care Team (ACT) that utilizes the FPSS model has been implemented (reimbursed through DPBHS and Medicaid) in DE to provide evidence-based family support services and improve access to behavioral interventions for children with ASD. Currently, DPBHS is the only DE agency that provides a reimbursable mechanism for family support and care coordination.

As part of the effort to improve care of children with ASD, the Swank Autism Center was established at Nemours/AI DuPont hospital. The Swank Autism Center is a multi-disciplinary center composed of experts dedicated to improving diagnosis and evidence-based treatment of ASD, provision of care coordination through a medical home model, and offering an ASD-friendly hospital setting. The Swank Autism Center now employs a psychiatrist as its medical director, eight psychologists, two social workers, and other staff. Their postdoctoral fellows participate in LEND and the Swank Autism Center staff provide trainings through the DNEA.

Children in DE with a diagnosis of ASD are also entitled to free and appropriate public education from birth through Part C, i.e. early intervention services, and Part B educational services. Child Development Watch helps enhance development of young infants and toddlers with ASD from birth to three years and train families in meeting the needs of their child. When a child is found at-risk for autism, a referral is made to the child’s school district for determination of Part B eligibility. Part B allows children with ASD to receive educational programming within the school system.

Implementation of these multiple measures has had a significant positive impact on early diagnosis of ASD as well as on service delivery for supporting families of children with ASD. For instance, previously, Child Development Watch did not routinely screen for ASD or provide families with any information on ASD. Through the Building Bridges initiative, the autism-specific screening MCHAT-R tool is routinely used as part of the developmental screening process of at-risk infants. Moreover, improved systems to route families to specialty centers and trained fellows to conduct diagnostic assessments has brought down the current average of diagnosis of ASD has been brought down to 28 months, which is 2 years earlier than the previously reported average age of diagnosis in DE based on our survey. Families are now able to receive diagnoses and services within the state of DE without requiring to travel to neighboring states. As a result of these multiple initiatives, families of children with ASD/DD recently reported an average score of 4.19/5 on the self-efficacy sub-scale of the Family Empowerment scale. In 2018, Autism Delaware reported providing family navigation services to 593 new families of children with ASD in the state of DE. Moreover, the ever-expanding community of accessible clinicians trained in autism care through the LEND program has significantly increased the trained workforce available within the state of DE. Overall, through several cascading and concurrent efforts, the needs assessment survey has significantly helped inform and improve policy and practice guidelines pertaining to ASD in the state of DE to ensure more effective and accessible care for children with ASD and their families.

Limitations

The survey used in the study was a slightly modified version of the PA autism needs assessment survey that has been conducted twice thus far (2009, 2018) in the state of PA (Schott et al., 2020; Turcotte et al., 2016). Nevertheless, we did not conduct additional studies to assess the validity of the present survey reported in this paper. Although the survey was designed to be comprehensive, there were several limitations within the survey instrument. In terms of diagnosis of ASD, we did not obtain details from parents regarding their wait times to receive a diagnosis for their child. Similarly, we did not ask parents details about the number and type of referrals and services that families received after their child qualified for a diagnosis of ASD (for instance, referral to speech therapists, certified behavioral analysts, child psychologists, etc.). Although we collected comprehensive data on interventions received by children and families, we did not provide caregivers with descriptions of each broad intervention category (for example, behavioral interventions, early intervention, etc.) and specific treatments that would qualify under the treatment category. Moreover, the survey data lack specificity relative to the types and levels of child healthcare services that caregivers were asked to report on. For instance, we did not ask details regarding the types of early interventions or behavioral intervention services children and youth had received previously or were currently receiving as well as the intensity/dosing at which children/youth were receiving these services. We also did not provide caregivers options to self-identify different types of problem behaviors (feeding problems, etc.) in their child and report on the extent of therapy services that their child was receiving for these problems. Future studies should try to address these limitations by designing more comprehensive survey instruments.

Despite wide circulation of the survey, our final sample was relatively small and consisted predominantly of Caucasian families. We could therefore not conduct comparisons relative to our research questions across families belonging to different races/ethnicities. Over 50% of our sample had a college/graduate degree and over 22% of families had household incomes over $100,000. Thus, the nature of our sample in terms of the demographics and geographic dispersion limits the generalizability of our findings to a broader, heterogeneous population in and outside DE. We also included a wide age range of children and youth in our study. Future studies should evaluate the suggested relationships between variables within samples of children in narrow age ranges.

Our data are based on parent reports, hence, there is no way to clinically confirm parent-reported diagnoses and assess whether expressed needs are appropriate given the child’s condition. The cross-sectional nature of the data also did not allow us to examine changes in child and family functioning and service needs over time. Future longitudinal studies should assess the changing relationship between child-, family-, and service-related variables in ASD across the lifespan. The reported findings are purely correlational; our study design did not allow us to test any causal hypotheses. Moreover, we were only able to predict 20–35% of the variance in the outcome measures. Other variables including measures of caregiver physical and mental health, family dynamics and cohesiveness, and comprehensive measures of children/youth’s functional abilities beyond basic ADLs may also be related to the outcome measures. Future studies should perhaps use a combination of research methods including surveys, in-depth interviews, focus group discussions, as well as standardized assessments to collect data on these multiple factors that may influence child and family outcomes.

Conclusions

The alarming increase in the prevalence of ASD has placed a tremendous strain on the service system. The lifespan nature of ASD adds significant financial, time, and work-related burden on families and impacts overall family well-being. The findings of the statewide survey have implications for the service system in DE and beyond. Child healthcare services are more frequently accessed by families compared to family support services. Nevertheless, around 50% caregivers reported multiple unmet needs pertaining to child healthcare, specifically for the very services that children and youth commonly received. An equally high proportion of families identified unmet needs for family support services. Unmet family support needs were significantly predictive of unmet child healthcare needs and access issues related to child healthcare services were in turn predictive of the child/youth’s functional dependence in ADLs. Eighty percent caregivers also reported employment-related disruptions as a result of caregiving responsibilities. Findings from this study were used to guide the development and implementation of several initiatives that have led to positive changes in early autism identification and service delivery in DE. Our findings also urge for the adoption of a holistic, family-centered model of care where services address needs of the child with ASD and their entire family to enhance child- and family-related outcomes.