African American Parents’ Perceptions of Diagnosis and ...alence of ASD has heightened the need for more educational and therapeutic services and interventions for individuals with

African American Parents’ Perceptions of Diagnosis andServices for Children with Autism

Jamie N. PearsonNorth Carolina State University

Hedda MeadanUniversity of Illinois at Urbana-Champaign

Abstract: The identification of children with autism spectrum disorder (ASD) during the first two years of lifehas become more promising; however, the probability of early ASD diagnoses does not always extend to AfricanAmerican children. This disparity has decreased the likelihood that African American children will benefit fromearly intervention services. This qualitative inquiry explored, via semi-structured interviews, the perceivedfactors that facilitate and impede early diagnoses and access to services among African American parents ofyoung children with ASD. A constant comparative approach was employed and 15 themes related to diagnoses,services, and recommendations emerged (e.g., parent knowledge of ASD as a facilitator to diagnosis, “aggressiveadvocacy” as a barrier to accessing services, and parent education as a recommendation for addressingidentified barriers). Parent advocacy and partnerships with professionals were overarching themes in this study.Implications for parent training related to knowledge of ASD, parent advocacy, and partnerships withprofessionals are discussed.

Recent findings have indicated that the prev-alence of ASD is 1 in 68 children (CDC, 2016).Over the past several years, the increased prev-alence of ASD has heightened the need formore educational and therapeutic servicesand interventions for individuals with ASD(Wong et al., 2014). The early childhood yearsare critical for children with ASD becauseearly identification is associated with in-creased benefits from interventions and ser-vices (Bruder, 2010; Irvin, McBee, Boyd,Hume, & Odom, 2012). Although the identi-fication of ASD in children younger than twoyears has become more promising in recentyears (Boyd, Odom, Humphreys, & Sam,2010), this likelihood of early ASD diagnosesis not consistent among African Americanchildren. African American children are oftendiagnosed months or even years after the on-

set of symptoms and can go undiagnosed untilschool age or later (Hilton et al., 2010; Man-dell et al., 2009).

Access to Services

Across racial and ethnic backgrounds, servicesfor individuals with ASD have been describedas limited, inaccessible, and costly (Dymond,Gilson, & Myran, 2007; Irvin et al., 2012).Among families of color however, access toappropriate services is further compoundedby factors such as socioeconomic status andliving environment (Reichard, Sacco, & Turn-bull, 2004). Some of the work around theintersection of culture, race and disability hashighlighted the challenges that families ofcolor face when seeking access to services.For example, Blanchett, Klinger, and Harry(2009) argue that minority families of chil-dren with disabilities face barriers to accessingservices such as: (a) differing cultural perspec-tives of disability, (b) limited access and unfa-miliarity with available service delivery options,and (c) service providers’ lack of understandingof factors such as race, social class, cultural val-ues, and experiences. Blanchett et al. (2009)suggest that when families of color seek servicesfor children with developmental disabilities,they are likely to face systems and structures

This research was supported in part by fundingfrom the Office of Special Education Programs,U.S. Department of Education: Project LEAD(H325D100062). The views or opinions presentedin this manuscript are solely those of the authorsand do not necessarily represent those of the fund-ing agency. Correspondence concerning this articleshould be addressed to Jamie Pearson, 2310 StinsonDrive, Campus Box 7801, Raleigh, NC 27695.E-mail: [email protected]

Education and Training in Autism and Developmental Disabilities, 2018, 53(1), 17–32© Division on Autism and Developmental Disabilities

African American Mothers and ASD / 17

mailto:[email protected]

(e.g., human and community services, specialeducation system) that are not adequately pre-pared to help them navigate services. In manycases, this results in families of color receivingculturally unresponsive and inappropriate ser-vices and interventions.

Other researchers argue that healthcare pro-viders’ (HCP) knowledge and perceptions ofAfrican American families impedes access to ser-vices for these children (Gourdine, Baffour, &Teasley, 2011; Liptak et al., 2008; Mandell, List-erud, Levy, & Pinto-Martin, 2002; Thomas et al.,2007). For example, Reichard et al. (2004)found that many families of children with devel-opmental disabilities from minority back-grounds reported difficulties finding competentand trustworthy practitioners who were empa-thetic and understanding of their concerns.On the other hand, Gourdine et al. (2011)purported that African American parentsare less likely to view certain treatmentmethods as helpful for their children be-cause of the history of stereotyping, discrim-ination, and racism that they have experi-enced when seeking mental health servicesin the past.

Barriers to Diagnoses for African AmericanChildren

Among African American children in particular,the three primary categories that contribute tothe disparate access to diagnoses and servicesinclude: differential diagnoses, socioeconomicstatus, and cultural divergence (Pearson, 2015).Previous researchers (e.g., Blanchett et al.,2009) have described similar barriers and chal-lenges related to children of color with ASD.

Differential diagnoses. Differential diagno-ses among African American children are de-fined as rates and timing of diagnoses of ASDthat are less than or more delayed than thoseof European American children (Pearson,2015). Access to services for African Americanparents of children with ASD is a commonbarrier to obtaining accurate and timely diag-noses. In their work, Mandell et al. (2002)found that on average, African American chil-dren were 7.9 years old when they first re-ceived a diagnosis. Mandell and colleaguesalso found that 50% of the European Ameri-can children in their sample received an ASDdiagnosis by the age of 5.5 while less than 30%

of African American children received a diag-nosis of ASD by age 5.5.

Socioeconomic status. Socioeconomic status(SES) is viewed as a barrier when financial re-sources inhibit access to services for this popu-lation. Low SES, however, does not account forthe under diagnosis and misdiagnosis of ASD inAfrican American children. Low SES impactsfamilies across racial and ethnic backgrounds(Irvin et al., 2011); however, given the dispro-portionate number of African American chil-dren under 18 living in poverty (DeNavas-Walt,& Proctor, 2015), it is believed that low SESfurther exacerbates delayed diagnoses and ac-cess to services among this population (Pearson,2015). For example, Liptak et al. (2008) foundthat families living in poverty had decreasedaccess in getting care from a specialist, having apersonal physician, getting acute care, and re-ceiving preventative care for their children.

Cultural divergence. “Cultural divergence isthe idea that there exists a disconnection be-tween parents of color and the medical profes-sionals who treat their children” (Pearson, 2015,p. 54). Cultural divergence is a barrier describedas cultural phenomenon that impacts access toservices for African American families of chil-dren with ASD. As a result, many African Amer-ican families face culturally unresponsive anduntimely access to early intervention.

Cultural divergence also highlights thenotion that HCP knowledge and percep-tions of African American families impe-des diagnoses and access to services (Liptaket al., 2008). For example, in their case study,Gourdine et al. (2011) found that a two-parent,college-educated, middle-class African Ameri-can family faced many challenges obtaining aninitial diagnosis and subsequent access to ser-vices. During their first clinical visit, HCPs as-sumed the parents were uneducated and imme-diately recommended placing their son in aninstitution. Reichard, Sacco, and Turnbull(2004) found that culturally and linguisticallydiverse families of children with developmentaldisabilities reported difficulties finding compe-tent and trustworthy practitioners and wantedthem to show more concern. Zuckerman et al.(2013) identified disparate diagnoses and refer-rals for Latino and African American childrenwith ASD based on the cultural perceptions ofthe medical professionals who treated them.Their findings indicated that HCP perceptions

18 / Education and Training in Autism and Developmental Disabilities-March 2018

of families of children with ASD suggested thatLatino and African American children had lessknowledge of ASD than parents of EuropeanAmerican children. The HCPs also suggestedthat, as practitioners, they faced more difficultyin recognizing the characteristics of ASD in La-tino and African American children, as com-pared to European American children (Zucker-man et al., 2013).

There is a dearth of literature around diagno-sis and misdiagnosis of ASD in the AfricanAmerican community (Mandell et al., 2002).Despite the availability of evidence-based,early intervention services for children withASD, African American children continue togo undiagnosed and misdiagnosed at alarm-ing rates. These findings reflect a need toexplore the reasons why late diagnoses anddisproportionate access to services are, asindicated throughout the literature, uniqueto this ethnic minority population. There-fore, the purpose of this study was to ex-plore the perceived notions that facilitateand impede early diagnoses and access toservices for children with ASD in grades K-5,by interviewing African American parentsabout their experiences. This study wasguided by the following research questions:(1) What are the reported experiences ofAfrican American parents of children withASD in grades K-5 when obtaining an initialdiagnosis? (2) What are the reported expe-riences of African American parents in gain-ing access to services? and (3) What recom-mendations do African American parentshave for educators, service providers, andhealthcare providers to better serve theneeds of African American children withASD and their families?

Method

Participants

Semi-structured interviews were conductedwith 11 African American mothers of childrenages 4–11 with ASD living in a midwesternstate. The inclusionary criteria were: (a) a par-ent or caregiver of a child with a primarydiagnosis of ASD who qualified for specialeducation and related services in a publicschool, (b) both parents/guardians and thechild were African-American and resided in

the state, and (c) the child was between gradesK-5 at the time of the study. All caregivers(including fathers) were eligible and invitedto participate; mothers, however, were theonly respondents.

After receiving Institutional Review Boardapproval, efforts were made to reach familieswho resided in all regions of the state, includ-ing urban, rural, and remote communities.Participants were recruited through a localautism program, Parent Training and Infor-mation Centers, Easter Seals, and various localcommunity agencies using emails, newsletters,and flyer announcements. Thirteen parentsexpressed their interest in the study after re-ceiving a flyer from the researchers or fromparticipants who had already completed thestudy (i.e., snowball sampling). Of the 13 par-ents who expressed interest, 11 met inclusioncriteria to participate in the study. Data werecollected from 11 African American mothersin urban and rural areas whose children(boys, n � 9; girls, n �3) were 4–11 years old(mean age � 7.92 years) at the time of thestudy. The mother’s ages ranged from 31 to 48years (mean age � 38.9 years). Six motherswere single, three were married, and two wereliving with their partners. Annual family incomeranged from $8,700 to $90,000 (mean AnnualFamily Income � $48,600). Two participantswere mothers of two children with ASD who metinclusion criteria; therefore, child data is repre-sentative of 13 children (see Table 1).

Data Collection

To explore the experiences of African Americanparents of children with ASD, participants com-pleted a family background questionnaire andparticipated in semi-structured interviews.

Family information questionnaire. The Fam-ily Information Questionnaire was developedby the authors and was administered to collectdemographic information about the parentsand the types of services that their childrenwith ASD received. The questionnaire included15 items and took 5–10 minutes to complete.The questionnaire included demographic ques-tions such as parent’s age, gender, marital status,level of education, employment status, familyincome, and child information. The question-naire also included questions about the types


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and amount of services their child with ASDreceived.

Interviews. The first author conductedsemi-structured interviews with each partici-pant. The interview protocol was piloted witha single mother of a 10-year-old child withASD. The pilot participant confirmed that theinterview questions were clear and expre-ssed that the questions were developed wellenough to capture the experiences of AfricanAmerican parents of children with ASD. Thefinal protocol included seven open-ended ques-tions (see Figure 1). The main areas of inquirythat were addressed include: (a) experiences ofAfrican American parents of children with ASDobtaining diagnoses, (b) experiences gainingaccess to services, and (c) recommendationsfor healthcare providers, service providers,and educators to better meet the needs ofAfrican American children with ASD. Duringeach interview, the researcher followed upwhen necessary, with additional probes basedon information that parents provided in thefamily information questionnaire. The inter-views were conducted at a time and place that

was most convenient for the participants (e.g.,public library, homes). Each interview was au-dio-recorded, field notes were collected, andinterviews were transcribed verbatim. Ten outof 11 interviews lasted between 42 and 73minutes, and one interview lasted 10 minutes(average � 53 minutes).

Data Analysis

Data from the Family Information Question-naire were analyzed to provide descriptive in-formation about the participants (see Table1). The questionnaire data were compared tothe interview data to provide support fordata triangulation (e.g., number and types ofservices). A constant comparative method(Corbin & Strauss, 2008) was used to analyzethe interview data and data analysis was con-ducted in four phases. First, the researcherseach read, independently, one transcript at atime to identify and label significant pieces oftext that emerged from the data (i.e., opencoding). Next, the researchers met to reach a

Figure 1. Interview Protocol.


consensus on significant text and develop cat-egories based on their line-by-line coding.Third, the researchers compared the catego-ries to their previously identified categories toensure consistency. Finally, the first authorreviewed all of the transcripts to ensure thecategories were applied uniformly, and to-gether, the authors developed the final emer-gent themes.

Credibility and trustworthiness. To selectappropriate participants the researchers re-cruited from a number of community agen-cies, social networks, and schools across thestate. Participants were screened prior toscheduling the interview to verify that theymet criteria for the study. Furthermore, theresearcher employed a snowball samplingtechnique such that each participant wasgiven recruitment flyers and was encouragedto share them with other families who metcriteria. Each of these measures was taken toensure that the sample was purposely identi-fied, effectively recruited, adequate in num-ber, and representative (Brantlinger, Jimenez,Pugach, & Richardson, 2005).

To ensure that the data were credible andtrustworthy the researchers employed data tri-angulation (i.e., questionnaire and semi-struc-tured interview) and researcher reflexivity(i.e., the first author was forthright about herposition and perspectives within the contextof this research by monitoring her possiblebiases through field notes, memos, and regu-lar debriefings). Additionally, level two mem-ber checks were employed to confirm theaccuracy and inaccuracy of the transcript sum-maries, and to gain support for the research-ers’ conclusions. Ten out of 11 parents partic-ipated in the member checks (i.e., reviewedsummaries). Feedback from eight participantsconfirmed the validity of the researcher’s in-terpretation of the responses. Feedback fromtwo mothers provided clarifications related todiagnoses. For example, one mother’s clarify-ing response was, “The school [early educa-tion center] diagnosed her with autism at thattime; she was 2 1/2. She did not receive amedical diagnosis from a health care provideruntil she was 6.” Finally, the first authorworked collaboratively, with a culturally andethnically diverse research team with exper-tise in both content and methodology duringdata analysis. The team verified transcripts,

reviewed and verified summaries, and assistedin coding (Brantlinger et al., 2005).

Findings

After analyzing the data, seven themes emergedas they were related to experiences obtainingdiagnoses: (a) navigation, (b) concerns initiatedby others, (c) referrals, (d) extended familyviews, (e) parent knowledge of developmentand disability, (f) HCP knowledge of ASD, and(g) HCP response to parent concerns. Addi-tionally, seven themes were categorized as ex-periences related to accessing services: (a) ad-vocacy, (b) partnerships with HCPs, serviceproviders, and educators, (c) sources of sup-port, (d) healthcare coverage and costs, (e)employment, (f) geographical location, and(g) family life events. Finally, three themeswere identified in the mother’s recommenda-tions for HCPs, service providers, educators,and other parents. These themes include:training, education, and experience. Figure 2illustrates themes and sub themes related todiagnoses, access to services, and recommen-dations for practice.

Research Question 1: Experiences ObtainingInitial Diagnoses

The age at diagnosis for the 13 children whoseparents participated in this study ranged from1.5 years to 6 years. The average age at diag-nosis was 3.5 years. Five (38.5%) children werenot diagnosed with ASD until they were 4years or older. In regards to their experiencesaccessing EI services, three of the four moth-ers who had access to EI often discussed chal-lenges with receiving EI for their childrensuch as inflexible work schedules. The sevenmothers who did not have EI services for theirchildren, acknowledged the benefits, and of-ten expressed a desire to have had the oppor-tunity for those services for their children at ayoung age. During the interviews, motherswere asked to share their experiences relatedto obtaining an initial diagnosis of ASD. Anumber of categories and subcategoriesemerged in their responses to this questionthat act as facilitators or barriers to obtainingdiagnoses for African American children withASD (see Figure 2).


Facilitators. During the interviews, a fewmothers identified specific factors that helpedthem obtain diagnoses for their children.These emergent themes referred to as facili-tators include: navigation, concerns initiatedby others, and referrals.

Navigating the service delivery system. Fourparticipants shared their experiences withnavigating the service system when seeking adiagnosis for their child. In instances whenthey were not able to get immediate attentionand services, mothers sought other avenues.For example, Jennifer said:

Because it took so long to get in to seeDr. M [developmental pediatrician], I wentthrough [community organization] and Iwas able to get in to see one of their thera-pists and she was the one who diagnosedhim.

In two cases, participants discussed hownews and media helped them with navigationrelated to obtaining a diagnoses and services.Meghan explained:

I felt like I was frustrated with the doctorbecause at that time I knew nothing about

Figure 2. Emergent Categories, Themes, and Recommendations.


autism. And it just so happened that at thattime I think Toni Braxton was coming outand Jenny McCarthy was coming out and Iam like oh my gosh, he does that. And, so,I just think that like, if I didn’t watch that orsee them on Good Morning America, youknow, I wouldn’t have known anything ei-ther. So when it came time to go to thedoctor and I filled out his general check-up,I am like, well he doesn’t do this. I felt likethose are red flags. So, I am like, somebodycould have said something. You all couldhave told me to go here or, you know, but Idid it all by myself.

Concerns initiated by others. In two cases,mothers mentioned that someone else (e.g.,educators, service providers, friends) broughtto their attention that their child’s communi-cation, socialization, and/or behaviors werepossibly indicative of a disability. For example,during a weekend retreat, Deborah was shar-ing her concerns about her son’s develop-ment with a group of friends and expressedthat she was not familiar with ASD. She said,“The special ed teacher [friend] said, ‘haveyou ever heard about autism?’ I said, ‘I heardof it, but I didn’t know what it was.’ She said,‘well look into that. It could be that.’” Simi-larly, Laura shared, “He was very busy and thatwas an issue for me. He wouldn’t sit still. Andsomeone [friend] had mentioned to me thathe should be checked out. She said, ‘you knowhe might be delayed.’”

Referrals. Deborah explained that it washer friend’s referral that helped her obtain adiagnosis for her son. She said,

There was a lady that worked with me. Sheworks with special needs children.

She asked me to bring him with me. Shesaid, let me just observe him. So, when shewas doing a little observing just for me, shesaid, you know what, it does seem like yourfriend is right. So, she told me to gothrough what is called Easter Seals.

Similarly, Linda said, “I watch TV, youknow; things tell the signs so I took her to thedoctor and let her pediatrician know. She re-ferred me to Dr. M [doctor’s name] and hediagnosed her.”

Barriers. During the interviews, mothersalso discussed a number of factors that created

difficulty when they were seeking to obtaindiagnoses for their children. These emergentthemes referred to as barriers include: ex-tended family members’ views, parent knowl-edge of development and disability, HCPsknowledge of ASD, and HCP responses to par-ent concerns.

Extended family views. Five participants inthis study discussed the ways in which theirextended family members’ perceptions oftheir child delayed the process when theywere trying to obtain a diagnosis. In someinstances, family members noticed character-istics and behaviors that were indicative of apossible disability, but they viewed them astypical behaviors. For example, Meghanshared a story about how her father’s views ofher son’s behaviors conflicted with her owninstincts. She said, “He [child] would havethose tantrums and I was like, oh my gosh,what is going on. My dad is like, ‘he is just aboy.’”

In other instances, participants and familymembers were more passive in their responsesto observed behaviors and characteristics ofASD. That is, they were aware of the problembehaviors, but did not always address them.Laura shared her frustration about her moth-er’s views of her son:

My mama was a daycare provider and I waslike, ‘did you really overlook all of this?’ Ifelt like she should have been the first one,but that is her grandbaby so there is noth-ing wrong with my grandbaby.

Similarly, Lynette said:

They [her extended family] just kind ofavoided it and it became very clear to methat they really were not going to take itserious when they [her children] wereshowing different behaviors and things–there was a strict intolerance to it.

Parent knowledge of development and disability.Another primary theme related to obtainingdiagnoses was parent’s general knowledge ofchild development and disability. In two cases,mothers admitted that they knew little aboutdevelopment and disability, and discussed therole it played in their decisions to seek a diag-nosis. In other words, some mothers knewsomething was different about their child, but


they were not exactly confident in their knowl-edge of the characteristics of disability. Jenni-fer said, “So that is why I waited a year. Itwasn’t because I was being naı̈ve about it. Itwas more so I wanted the school to tell me thatthey see a problem. Confirm what I alreadyknew.”

Other mother’s indicated that their knowl-edge of child development in general, waslimited because their child with ASD was alsotheir first child. For example, Deborahshared, “being she is my only child, I was ateacher but I worked with kids five and up. So,if they are walking and talking I could handlethat. I wasn’t familiar with babies.”

HCP knowledge of ASD. One mother whoparticipated in this study indicated that herchild’s primary HCP lacked the knowledgeand/or training to provide timely diagnosesand support. On a number of occasions thedoctor actually expressed that she was notfamiliar with ASD. Lynette explained,

The first pediatrician we had, she was just ageneral practitioner. She is like, ‘I reallydon’t know anything about it [autism]’. Iwould come to her and tell her differentthings and she was just like, ‘I really don’tknow anything about it.’

In other cases, HCPs’ knowledge of ASDwas reflected in their responses to parents’concerns about their children’s development.The fact that HCP’s ignored characteristics ofASD in addition to parent concerns appearedto be associated with their actual knowledge ofASD. This phenomenon is described in moredetail below.

HCP response to parent concerns. In thisstudy, a frequently mentioned barrier to ob-taining diagnoses for African American chil-dren with ASD occurred when HCPs igno-red parental concerns. Even when mothersbrought forth their concerns of a potentialdelay or disability, they were often challengedby the responses they faced from their child’shealthcare provider. Of the 11 mothers whoparticipated in this study, five shared similarexperiences. Meghan said:

So I brought him to the doctor and I amlike, ‘well he is not pointing. He doesn’twave.’ And she said, ‘oh you know he is just,he has a delay he will be fine. No need to do

anything.’ So the next time I went to thedoctor I told her, I said, ‘he is still notpointing. He is not doing any nonverbal’and she said, ‘well you know, some kids,they just have a delay.’ So at the next ap-pointment–same thing. I said, ‘now he ishaving like these tantrums.’ She said, ‘atthat age that is normal.’ So I took it uponmyself, I am like I need to call somebodyelse because obviously she is not listening tome. So I kept telling her I said, ‘well I amseeing more and more about autism’ and Istarted doing the research and I am like,‘can you test him for autism?’ and she saidat the time, ‘well I don’t really think he hasautism.’ And I said, ‘well I still want himtested.’

Overall, the most frequently mentioned fa-cilitator for obtaining diagnoses was havingthe knowledge and resources for swift andeffective navigation of services. Two of themost frequently mentioned barriers includedHCP response to parent concerns and ex-tended family views of disability.

Research Question 2: Experiences AccessingServices

In terms of experiences with services in schooland community environments, mothers re-ported a number of facilitators and barriersfor gaining access to services (see Figure 2).Positive experiences with educators, adminis-trators, and service providers were often facil-itated by factors such as advocacy and partner-ship. Perceived barriers associated withservices in schools included teacher trainingand experiences.

Facilitators for accessing services. Participantsdiscussed a number of facilitators that posi-tively shaped their experiences with gainingaccess to services. Parent advocacy was a pri-mary theme that was echoed throughout anumber of interviews as a strategy to impactaction and attention to their child’s needs.Other themes that were identified as facilita-tors of service provision include: (a) partner-ships with educators, service providers, andHCPs, (b) general satisfaction with services,and (c) sources of support (see Figure 2).

Advocacy. One of the most fundamentalways that mothers were able to gain access to


services for their children was through advo-cacy. During the interviews, nine out of 11mothers explained how they have often advo-cated for the rights and services of their chil-dren. Tiffany explained:

We were able to advocate to get her [aide]to continue to be with our daughter and weeven had to be specific in what we wanted toput in her IEP. They didn’t want to putpersonal aide. They wanted to put class-room aide and we had to say, ‘I am sorry, weweren’t born yesterday. We know the differ-ence and we want a personal aide who isspecifically for our daughter not somebodythat you can pool and do whatever youneed.’

Pursuit of knowledge. Another facilitatorthat aided in parents’ ability to access timelyand appropriate services for their children wasthe pursuit of knowledge- a subcategory ofparent advocacy. Four mothers discussed theefforts they made to increase both their gen-eral knowledge about ASD, and their knowl-edge of the services that were available fortheir children. For example, Tameka shared,“It’s just me taking advantage and going to theclasses and trying to learn stuff.”

Similarly, Lynette shared, “I had to go forparental classes. So, they could teach us howto work with the children in therapy. I think itwas like four or five sessions of that for my-self.”

Dissemination of knowledge. A second sub-category of parent advocacy was disseminationof knowledge. During the interviews, threemothers who discussed their efforts to gainknowledge, also shared the knowledge theyhad acquired, with family members, friends,and other individuals in their communities.Meghan said, “‘cause I would educate anybodyin a minute. I take them to the side, ‘don’tjudge him. He has autism.’” Deborah said, “Iput it on my social networks. I try to talk toparents in the school and let them know, heythey are offering this for the kids.”

Partnerships. Another facilitator for access-ing services was the development of collabor-ative partnerships between the parents (pri-marily mothers) and the educators, serviceproviders, and healthcare providers. More-over, some of these partnerships were withindividuals in the community who connected

the families to the appropriate administratoror service provider (i.e., external partner-ship). Of the 11 mothers who participated inthis study, six of them discussed the partner-ships they developed and the impact thatthese partnerships had on their experiences.Meghan shared her experiences with ateacher who did not have any previous expe-rience teaching children with ASD. Over timehowever, she was able to develop a partner-ship with him that led to more collaborationand positive outcomes. She said:

The teacher went to different seminarsabout autism. So, he was trying to educatehimself. He tried his best . . . He would textme all the time and I would text him. And,when J [child’s name] forgets his home-work he takes a picture of it and texts it tome.

Sources of support. During the interviews,several mothers expressed how they were ableto cope with the challenges, frustrations, andbarriers they often faced when seeking accessto services for their children. They often re-lied on their sources of support as avenues ofencouragement, strength, and perseveranceto continue to advocate for services for theirchildren. The two primary sources of supportthat the mothers referenced were faith andfamily.

Faith. Five mothers in this study refer-enced their faith as source of support. Tiffanysaid, “Our family has done amazing, I wouldsay, by God’s grace.” Similarly, Ebony said,“The first 4 and a half months of her life it wasvery dire financially. It was really just the graceof God. It [faith] has kept me sane.”

Family. During the diagnosis process,mothers often described many of their familymembers’ perceptions of disability (ASD inparticular) as a challenge, or barrier. Oncemothers were seeking or obtaining access toservices however, they described more positivedynamics of their relationships with their fam-ily members. For example, Tameka explained,

Blessedly we had his [child’s father] mombecause she was babysitting for us. The earlyintervention really sucks if you are not theone at home. So she became our stay athome parent. The services were happeningin her house and she was very good.


Tiffany acknowledged how pivotal it was tohave the support of her husband as she copedwith the experiences and challenges of par-enting a child with ASD. She said, “I am for-tunate to have a husband. How many of thesekids, particularly African American children,are in single-family homes, particularly singlemoms, who don’t have the emotional supportas they are going through the stages of grief.”

Barriers. When asked about their experi-ences accessing services, participants also dis-cussed a number of factors that inhibited theiraccess to services, or created challenges withservice delivery. The emergent categories ofbarriers included: healthcare coverage andcosts, employment, geographical location,and family life events.

Healthcare Coverage and Costs. Five partici-pants discussed the impact that private health-care coverage in particular, has had on theirability to access services. These mothers ex-plained that they were better able to accessservices when their children were covered un-der state plans as opposed to private insur-ance. Tiffany shared,

It is unbelievable how much it would costand not only just meeting deductibles. Forexample, The Autism Center was $200 persemester; $200 to some people is a lot, andothers it’s like okay. But they are actuallychanging and they are going to be billinginsurance in the spring. And because it isthe beginning of the New Year, guess whatthat means? You have to meet your deduct-ible all over again, so you are going to bepaying thousands of dollars out of pocket toget services from somebody who doesn’teven have their master’s degree yet. There-fore, my daughter will not be able to con-tinue services there.

Lynette explained a common experiencethat families who have private insurance oftenface, “I think where parents run into problemswith insurance is when you have private insur-ance because they won’t cover a lot of things.”Three other mothers echoed experienceswhere they make too much to qualify for statecoverage, and too little to afford the co-paysand out of pocket expenses associated withprivate coverage.

Employment. For a few parents, particularlysingle, working moms, employment was in

some ways, a barrier to service delivery. Forexample, Tameka said, “If you are a workingparent it [EI] doesn’t work as well.” She wenton to say:

I really hate that I have to work. Not to saythat it would be so much easier if I wasn’tworking; at least I could devote more timeand energy to it [accessing services] if Iwasn’t working. The only time you can trulyfocus on it [implementing strategies] is onthe weekend because once you get homefrom work it is just like, feed them, go tobed.

Geographical location. The three motherswho live in rural areas expressed a number ofchallenges related to the accessibility of ser-vices due to their geographical location. Tif-fany shared how her location has been a bar-rier for accessing services for her daughter.She explained,

There are limited resources in southern[state] altogether, and being able to getABA therapy specifically; we haven’t beenable to do that. We tried to get ABA therapyand the closest place is like 45 minutes awayand I would have to go up there a coupledays a week. Driving 45 minutes to get ther-apy and having [three] other children isridiculous.

Family life events. Four mothers discussed anumber family life events that sometimes ei-ther impacted their ability to access services,interrupted services, or created a need foradditional services for their children. Someexamples of these family life events includeunstable housing (i.e., moving to and from anumber of shelters), relocating, divorce, childabuse and trauma, illness of a spouse, and thedeath of a loved one. Laura explained how itwas often difficult for her to focus on gettingservices for her son because she had to prior-itize the immediate needs of her family. Shesaid, “My mom was ill. He was diagnosed whileshe was ill. It was just so much. There was justso much going on at the time.” When discuss-ing the challenges of finances as a single par-ent mother, Deborah explained the following,

Every month I am behind I’m constantlyjuggling the car note and rent, making doand I shouldn’t have to. I am a supervisor, I


make decent money. I think I make moremoney than I have ever made in my life. Ishould not, you know be needing the childsupport. I wouldn’t have to work overtime. Iwould have more time to spend with her, todo things, you know, so that is the reality.And, I think the other reality is a lot ofpeople don’t want to hear it. Or they don’taccept, I think it is just assumed well, youare a single parent, you have to do two jobs.Well I don’t want to have to do that.

More than one third of the mothers whoparticipated in this study experienced familylife events that impacted their ability to obtainor maintain services for their children withASD. As such, these experiences were not onlystressors, but also external barriers that af-fected their ability to access services for theirchildren.

Research Question 3: Mothers’ Recommendations

At the end of each interview, mothers wereasked, What recommendations do you have foreducators, service providers, and healthcare provid-ers to better serve the needs of African Americanchildren with ASD? Their recommendations arediscussed below (see Figure 2).

Educators. The primary category thatemerged for educators was specialized train-ing and experience in autism. Ebony said,

I think teachers should be specialized inwhat they teach. Her teacher has a specialeducation certification, not a certificationin autism, and there is a difference. She hashad teachers that are specialized in autismand I could see the difference immediately.

Other recommendations for educators in-clude expansion of after school services andbetter communication with parents.

Healthcare providers. When participantswere asked about their recommendations forhealthcare providers, the primary categorythat emerged was knowledge and training forHCPs. For example, Laura said, “they just haveto seek experience because doctors are notgoing to say I don’t know. You know, just‘cause you have years of experience, don’tmean you have years of good experience.”Similarly, Meghan said:

I feel like maybe because of lack of knowl-edge and education, they should be more,what is the word? Not focus---but you know.Like I feel like I got turned away so manytimes. You know, and if I didn’t go on thereand Google or read he probably stillwouldn’t be diagnosed.

Lynette also discussed the importance oftraining for HCPs, “I think medical profes-sionals, they definitely need to teach this inthe schools because it doesn’t make any sensefor a parent to get a diagnosis and go back totheir pediatrician and they can’t help them.”

Interestingly, Ebony provided a suggestionthat would play on the strengths of HCPs spe-cialties. She said:

If a pediatrician has a patient with autism, Ithink the appointment should be tagteamed with a developmental pediatrician.Once a year it should be a team appoint-ment; general and developmental pediatri-cians and then maybe they can take a videoor something. They would get a better ideaof what was going on developmentally.

In addition to recommendations related totraining, education, and areas of specialty,participants recommended that HCPs bemore responsive to parents’ concerns. Tiffanysaid,

I recommend that educators, health profes-sionals, and other service providers reallylisten to the parents. I think everybody is sobusy and time is so limited that, you know,things fall between the cracks. Because inour case, I think our daughter should havebeen diagnosed a whole lot sooner than shewas.

Finally, one parent provided a recommen-dation for healthcare providers that wouldhelp parents navigate the service system.Tameka said,

It would be nice if upon discovery there wasmore than just some print out that theywere handing you–if there was an actualperson that they could hand you. Like thesocial services person–have that person youcan call.

Parents. Many recommendations providedby participants were actually for other parents.


The primary emergent theme was a need forparent education and support. Tiffany said,“Parents not only need to know the resourcesthat are available and how to access them, butthey need training themselves.” Similarly, Mi-chelle shared:

For me, the biggest thing is to help me tounderstand or help me to help him; not thegeneric class, but maybe what your particu-lar child might need. More parent educa-tion as far as, how to navigate these systems.

Discussion

The purpose of this study was to explore theperceived factors that facilitate and impedeearly diagnoses for African American childrenwith ASD in grades K-5 by investigating par-ents’ experiences gaining access to services.Overall, participants in this study indicatedthat (a) there is a need for more parent edu-cation and training around ASD for AfricanAmerican families, (b) HCPs should be moreresponsive to the concerns of African Ameri-can parents of children with ASD, and (c)HCPs should be more knowledgeable of ASDdiagnostic criteria. The participants also rec-ommended specialized training and experi-ence in ASD for educators. The following sec-tion is organized by the research questionsthat guided this investigation.

Obtaining Diagnoses

Previous research findings have indicated thatthe early childhood years are critical for chil-dren with ASD because the earlier a child isidentified, the greater the likelihood that heor she will benefit from interventions and ser-vices designed to address his or her needs(Bruder, 2010; Irvin et al., 2011). AfricanAmerican children with ASD whose parentsparticipated in this study were diagnosed onaverage, at 3.5 years old. At age 3, young chil-dren age out of early intervention services;moreover, these families and children havelikely not had any exposure to parenting pro-grams, community programs, or supportgroups, for example.

Overall, findings from this study indicatethat mothers’ perceptions of facilitators forobtaining diagnoses for African American

children with ASD include navigation, con-cerns initiated by others, and referrals. Previ-ous studies have not highlighted facilitatorsfor obtaining diagnoses; therefore, this studyextends the current literature in this domain.Furthermore, factors described by other re-searchers as barriers to obtaining diagnosesfor African American children with ASD in-clude extended family members’ views (Gour-dine et al., 2011), parent knowledge of devel-opment and disability, HCP knowledge ofASD (Mandell, Ittenbach, Levy, & Pinto-Mar-tin, 2007; Zuckerman et al., 2013), and HCPresponses to parent concerns (Reichard et al.,2004). These findings not only support previ-ous work, but also extend the literaturearound barriers to access for African Ameri-can families of children with ASD in two ways.First, the current study includes in-depth in-terviews with 11 African American mothers ofchildren with ASD; the only other qualitativestudy to address the experiences of AfricanAmerican parents of children with ASD was asingle-family case study (Gourdine et al.,2011). Second, unlike many of the quantita-tive studies that have been conducted aroundASD and African American children, the qual-itative data from this study highlight specificexperiences of African American families andprovide examples of both barriers and facili-tators for obtaining diagnoses and gaining ac-cess to services.

Gaining Access to Services

Positive experiences with educators, adminis-trators, and service providers in the schoolwere often facilitated by factors such as advo-cacy and partnership. Perceived barriers asso-ciated with services in schools included lim-ited teacher training and experience. Threeout of 11 mothers who participated in thisstudy were receiving various types of homeand community-based services for their chil-dren (e.g., play therapy, ABA therapy, socialskills group), on average, for three hours perweek. The primary service these families re-ceived in the community was social skillsgroups. In addition, those mothers of childrenwith ASD who live in rural areas of the stateexpressed more difficulties with accessingcommunity services than those who live inurban areas.


Recommendations

The participants provided various recommen-dations for educators, healthcare providers,and parents to better address the needs offamilies of children with ASD. Their primaryrecommendations suggest that educators andhealthcare providers need more training andexperiences specific to ASD. Mothers empha-sized the point that learning about ASD is notenough and experience is crucial. Moreover,the mothers suggested that parents needmore training and support. These recommen-dations support the previous work of Gour-dine and colleagues (2011) that suggests thatAfrican American parents need more oppor-tunities to access information on ASD, andHCPs need more training (Zuckerman et al.,2013).

Finally, mothers suggested that all serviceproviders be more receptive to the voices andconcerns of African American parents of chil-dren with ASD. The recent work of Zucker-man and colleagues (2015) based on theirnationally representative sample of childrenwith ASD, indicates that diagnosis is delayedby as much as three years after the first paren-tal conversation with the healthcare provider.The findings from the current study corrobo-rate previous work that suggests that (a) manyfamilies of children with ASD and other devel-opmental disabilities from minority and non-minority backgrounds face difficulties findingcompetent and trustworthy practitioners andwant them to show more concern (Reichard,et al. 2004; Zuckerman, Lindly, & Sinche,2015), and (b) there is a need for more sup-port for HCPs to be better prepared to pro-vide earlier diagnoses that will help youngchildren with ASD and their families gain ac-cess to early intervention.

Limitations and Implications

Limitations. The primary limitation in thisstudy was that participants were all mothers,and not representative of the SES and maritalstatus of African American families overall.Future studies should aim to recruit morerepresentative families. Moreover, this studywas based solely on mother’s reports, whichmay have influenced the accuracy of results(e.g., the number of services received in

school). A review of IEPs and other schooldocuments might be helpful in addressingthis limitation in future studies. Finally, thisstudy focused specifically on the experiencesof African American mother’s of children withASD. The interviews from this study providerich information about the lived experiencesspecific to these families. Therefore, compar-isons cannot be drawn about the differencesin diagnoses and access to services betweenAfrican American families of children withASD, and families from other racial back-grounds. It does, however, elucidate the voiceof African American parents of children withASD, little of which has been done in theliterature to date.

Implications for research. Given these limita-tions, future research in this domain should:(a) include a larger sample of African Ameri-can parents of children with ASD from variouslocations across the country, (b) include inter-views with African American fathers of chil-dren with ASD, (c) explore pliant barriers andfacilitators (i.e., those barriers in some fami-lies, that may be facilitators for others), and(d) include interviews with educators, HCPs,and service providers to gain their perspectiveon providing services for African Americanchildren with ASD and their families. Futureresearch might also employ additional sourcesof information such as IEP or teacher reports.

Participants in this study identified a num-ber of facilitators for accessing services andcoping with challenges (e.g., advocacy, collab-orative partnerships with professionals, andidentifying and tapping into sources of sup-port). Future intervention research shouldaim to develop and examine the effectivenessof parent-advocacy trainings that (a) embedempowerment practices as a component ofthe intervention, (b) emphasize advocacy,partnerships with professionals, and knowl-edge of ASD (e.g., social communication strat-egies) as tools for gaining access to services,and (c) rely on a sociocultural theoretical ap-proach whereupon African American familiescan engage with each other, share knowledgeof resources, share experiences, help brain-storm, and troubleshoot challenges related totheir experiences as parents of children withASD through critical reflection and discussion(Baumgartner, 2001).


Implications for practice. First, the findingsfrom this study indicate that there is a needfor more positive partnerships betweenhealthcare providers and African Americanparents. Second, African American parentsand extended family members should receivemore training and education to increase (a)their knowledge and awareness of ASD, (b)their knowledge of available services for chil-dren with ASD, and (c) their knowledge andskillset for effective advocacy. ASD occursonce in every 68 children (CDC, 2016) and,although the prevalence is consistent acrossracial and ethnic backgrounds, the reportedincidence of ASD is not. Participants in thisstudy indicated that they and their familymembers were sometimes unfamiliar withASD and didn’t realize the frequency withwhich it occurs in the African American com-munity. Therefore, news and media sourcesshould aim to be more representative by show-ing the faces and sharing the voices and expe-riences of African American families of chil-dren with ASD. It is plausible that thisexposure will not only increase awareness, butalso enable family members to feel more em-powered and able to advocate for their chil-dren, even when healthcare providers fail toprovide timely and accurate diagnoses.

This study extends the research on ASD inAfrican American children by elaborating onthe findings from correlational designs andhighlighting the lived experiences of thesefamilies. In addition, unlike previous researchin this domain, this study highlights facilita-tors, in addition to barriers to obtaining diag-noses and gaining access to services. Havingbetter knowledge of both facilitators and bar-riers alike could potentially shape future prac-tices.

Conclusion. The findings from this studysupport previous research that suggests thatAfrican American parents face difficulties withhealthcare providers who either have limitedknowledge of ASD (Zuckerman et al., 2013)or are not responsive to parental concernsrelated to ASD or disability (Zuckerman et al.,2015). This points to the need for more HCPtraining not only specific to the characteristicsof ASD, but training that also better preparesproviders to respond appropriately to paren-tal concerns. The findings from this study alsoadd to existing literature by sharing the voices

and untold experiences of 11 African Ameri-can mothers of children with ASD. Futurepractice around diagnoses and services forchildren with ASD should aim to prepare (a)knowledgeable (in regards to ASD) and re-sponsive healthcare providers, (b) experi-enced and responsive educators and serviceproviders, and (c) strong parent advocates,who together, can address the needs specificto African American children with ASD andtheir families.

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Received: 13 October 2016Initial Acceptance: 16 December 2016Final Acceptance: 6 February 2017


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African American Parents’ Perceptions of Diagnosis and ...alence of ASD has heightened the need for more educational and therapeutic services and interventions for individuals with