diff --git "a/assets/Books Chunks/Encyclopedia of autism spectrum disorders/book0_cleaned_chunk_28.txt" "b/assets/Books Chunks/Encyclopedia of autism spectrum disorders/book0_cleaned_chunk_28.txt" new file mode 100644--- /dev/null +++ "b/assets/Books Chunks/Encyclopedia of autism spectrum disorders/book0_cleaned_chunk_28.txt" @@ -0,0 +1,3181 @@ +having a child with a disability of any type is made +even more challenging as a result of the stigma +associated with such a difference. Stigma is gen- +erally defined as a form of branding of an individ- +ual in which a community devalues his or her +social identity. In Korea, for example, despite +dramatic changes in autism awareness in all seg- +ments of society, autism (chap’ae) continues to be +a highly undesirable disability, and the diagnosis +is believed to be applicable primarily to children +and adults with profound intellectual impair- +ments. Other cultures provide pathways that min- +imize stigma. In India, the recent positive +portrayal of people with ASD on television and +in films, even if inaccurate, has opened dialogue +about disability and has provided a point of cul- +tural reference, and in some cases, pride (Singhal +2010). In the USA, many people who have both +ASD and above-average intelligence, while fac- +ing social challenges, still find gainful employ- +ment in the fields of engineering, computers, or +mathematics. +Within North America and Europe, the par- +enting experience of minority groups can +involve additional challenges as a result of cul- +tural differences. Kediye et al. (2009) described +challenges faced by Somali parents, such as the +language barrier in communicating with key pro- +fessionals; a perception of racism and being +judged; misguided advice from the general pub- +lic who assume poor parenting; and a sense of +estrangement in the absence of extended family. +However, it is important to recognize the wide +variability in experiences across minority +groups. For example, Magaña and Smith (2006) +found that Latina mothers of children with ASD +had significantly better overall well-being than +their non-Latina counterparts and reported strik- +ing differences in the degree to which Latina +mothers held more positive beliefs about their +children. + +Future Directions +The understanding of autism can only gain by +further examination of autism both across and +within cultures. Careful attention to observed sim- +ilarities and differences will help researchers and +clinicians better understand the disorder as well as +better design and develop interventions that are +applicable to families of all backgrounds. Some +specific potential areas for future work include the +following areas: +* As immigration patterns continue to shift with + political changes in every corner of the globe, + researchers are presented with continually + changing options for investigation of immigra- + tion and prevalence of ASD. +* Pediatricians and primary health care workers + are in need of simple, reliable methods of iden- + tifying ASD that do not require extensive train- + ing. More research on the validity of diagnostic + tools cross-culturally is needed to equip these + professionals with the instruments they need to + accurately diagnose ASD. +* The dramatic gap in appropriate intervention + options for the majority of children in the + world with ASD suggests the need for + researchers to work closely with professionals + on the ground to develop intervention + approaches that are cost-effective, feasible, + and culturally relevant. +* Relatively little research has examined whether + there are differences in symptom expression + across cultures. Genetic studies are underway + in many non-Western countries, which will + allow much greater understanding of how + genetic heterogeneity and culture interact to + influence the presentation of ASD. + +See Also +* Epidemiology +* M-CHAT +* Prevalence +* TEACCH Transition Assessment Profile + (TTAP) + +Curriculum +Louise Spear-Swerling +Southern Connecticut State University, New +Haven, CT, USA + +Definition +Broadly defined, a curriculum is the set of courses, +including the specific course content and +sequence of topics, taught in schools. The term +core curriculum refers to the set of courses and +content typically required of all students in a +school. In K-12 education, core curriculum +would usually include reading, writing, mathe- +matics, science, and social studies, as well as the +arts and physical education. Additionally, the term +curriculum sometimes is applied within a partic- +ular domain (e.g., the reading curriculum or the +math curriculum). Curricula within a particular +domain include specific subtopics or component +areas, with some sequencing of subtopics and +skills. For instance, a reading curriculum in the +primary grades (K-3) should address component +areas such as phonemic awareness, phonics, +fluency, vocabulary, and comprehension; within a +component area, the curriculum would address +easier skills before more difficult ones. In the +area of phonics, for example, children would be +taught to read simple, one-syllable words before +two-syllable words, and two-syllable words +before complex multisyllabic words. The term +curriculum is not synonymous with instructional +program. A curriculum could be implemented +through the use of one particular instructional +program or set of programs, but it could also be +implemented through instructional activities +developed by teachers or schools. + +Historical Background +Some countries, such as the United Kingdom, +have a national curriculum which standardizes +specific course content by grade. Although the +United States has no national curriculum, virtually +all states have their own standards for important +academic domains such as mathematics or read- +ing. These state standards provide some guidance +to local school districts about what state education +officials view as important content for each grade +level, K-12. Professional organizations and schol- +arly panels (e.g., the National Early Literacy +Panel, the National Math Advisory Panel) also +provide guidance to educators regarding impor- +tant curriculum content. Nevertheless, K-12 cur- +ricula can vary substantially from one state to the +next or even within a state, across districts, mean- +ing that curricular expectations for children at a +particular grade level also can vary substantially. + +Future Directions +The Common Core State Standards Initiative +(www.corestandards.org), a state-led effort coor- +dinated by the National Governors Association +Center for Best Practices (NGA Center) and the +Council of Chief State School Officers (CCSSO), +has outlined evidence-based standards by grade +level for K-12 English/language arts and mathe- +matics. States choosing to adopt these standards +would be addressing similar skills and content in +their core curricula, which might lead to more +consistency across and within states in expecta- +tions for students in each grade. + +See Also +* Reading +* Written Language + +Custodial Grandparents of +Children with Autism Spectrum Disorder +Jennifer Hillman1 and Connie Anderson2 +1Applied Psychology Program, The Pennsylvania +State University, Berks College, Reading, PA, USA +2Post-Baccalaureate Certificate Program in +Autism Studies, College of Health Professions, +Towson University, Towson, MD, USA + +Definition +Custodial grandparents of children with autism +spectrum disorder (ASD) serve as head of their +household; assume primary responsibility for at +least one biological, adoptive, or step-grandchild +diagnosed with ASD; and may or may not have +their caregiving responsibilities recognized via +legal adoption, guardianship, or formal custody +arrangements. Families comprised of custodial +grandparents and their grandchildren are called +grandfamilies, kin care, custodial, and skip- +generation families. + +Historical Background +Research on custodial grandparents of children +with ASD was predicated by general studies of +US grandparents who lived in the same household +as their grandchildren. Although the Census +Bureau began to gather data on grandparents who +lived in the same household as their grandchildren +in the 1970s, a lack of data regarding the individual +characteristics of those grandchildren, coupled with +multiple changes in autism’s diagnostic nomencla- +ture, has made it difficult, if not impossible, to +discern the number of custodial grandparents tak- +ing care of a child with ASD. +In 1970, the US Census Bureau reported that +2.2 million grandparents lived in the same house- +hold with a grandchild, but it was not possible to +determine if those grandparents served as primary +caregiver for their grandchild or if they co-resided +with additional members of the child’s family +including the child’s parent or parents. Over the +next few decades, increasing numbers of grandpar- +ents “lived under the same roof” as their +grandchildren; by 1997 more than 3.9 million +grandparents lived with a grandchild (see Hayslip +and Kaminski 2005). Meanwhile, while the 1994 +Diagnostic and Statistical Manual of Mental Disor- +ders (DSM), 4th edition, identified childhood +autism as a developmental disorder that included +individual diagnoses of Asperger’s disorder, PDD- +NOS, autism, childhood disintegrative disorder, and +Rett syndrome, the Census Bureau did not collect +enough data to determine how many of those 3.9 +million grandparents served as custodial, versus +co-resident, grandparents, much less custodial +grandparents of a child with autism (i.e., ASD). +By the turn of the century, the Census Bureau +(1999) collected data that allowed for the +identification of custodial, as well as co-resident, +grandparents and reported that of the 4.6 million +US grandparents who co-resided with a grand- +child, 1.3 million of them served as custodial +grandparents. These custodial, compared to +co-resident, grandparents were also more likely +to be grandmothers, to live in poverty, and to not +have health insurance for their grandchild (1999). +When the DSM-5 (APA) introduced ASD as an +umbrella diagnosis for autism in 2013, it was still +not possible to obtain a population count of cus- +todial grandparents of children with ASD via the +Census Bureau, and no formal research studies of +custodial grandparents of children with ASD +existed in the literature. However, recognized +experts in grandparenting like Hayslip began to +examine the custodial grandparents of children, in +general. A review of this early literature on custo- +dial grandparents, in general, revealed five pri- +mary themes including the heterogeneity of this +population, the personal costs and benefits asso- +ciated with assuming this role, the use of various +parenting styles, a desire for social support and +connection, and a need for essential social and +health services (Hayslip and Kaminski 2005). + +Current Knowledge +It remains impossible to obtain an accurate count +of the number of custodial grandparents of chil- +dren with ASD in the USA; no governmental or +private organizations gather the appropriate data +to make that official determination. One can, how- +ever, estimate how many grandparents currently +serve as custodial grandparents for children with +ASD in the USA. The Census Bureau indicates +that 2.7 million custodial grandparents in the USA +currently provide care for 2.5 million +grandchildren (Cancino 2016). When combined +with current prevalence rates of ASD, in which +1 out of 58 US children receive a diagnosis of +ASD (Autism and Developmental Disabilities +Monitoring Network 2018), 43,103 of those 2.5 +million children cared for by custodial grandpar- +ents could be estimated to carry an ASD diagno- +sis. Because additional census data indicate that +custodial grandparents care for grandchildren at a +ratio of 1.08 grandparents to 1 grandchild +(Cancino 2016), those 43,103 children diagnosed +with ASD would be expected to be cared for by a +total of more than 46,500 US custodial +grandparents. +Our knowledge of the estimated, more than +46,500, custodial grandparents in the USA cur- +rently caring for children with ASD remains lim- +ited. Important reference groups for the custodial +grandparents of children with ASD include the +parents of children with ASD; the parents of chil- +dren with other disabilities and chronic illnesses; +the custodial grandparents of children, in general; +and the traditional grandparents of children with +ASD. A review of these reference groups will +provide useful background information and points +of comparison for it currently knows about custo- +dial grandparents of children with ASD. + +The parents of children with ASD serve as an +essential reference group for custodial grandpar- +ents of children with ASD; the custodial grand- +parents of children with ASD, who assume the +role of surrogate parent, can be expected to share +similar experiences, challenges, and demands +(Hillman and Anderson 2019). It also is essential +to note that the parents of children with ASD, +compared to the parents of children with other +kinds of chronic illness and disabilities (e.g., hear- +ing and vision loss, Down syndrome, cerebral +palsy, intellectual disability, and diabetes), expe- +rience a variety of unique, additional stressors (see +Hillman and Anderson 2019). These stressors +include the challenging behavioral and communi- +cation problems typically exhibited by children +with ASD like elopement, tantrums, meltdowns, +insomnia, sensory sensitivity, stimming (e.g., +hand flapping, headbanging), an insistence upon +sameness, physical aggression, restricted and +unusual interests, restricted food choices, and dif- +ficulty with verbal and non-verbal communica- +tion. Additional, unique challenges for parents of +children with ASD, compared to parents of chil- +dren with other chronic disorders and illnesses, +include difficulties in obtaining appropriate ASD- +related services, transporting their child to a vari- +ety of appointments, and obtaining daycare and +respite care, social isolation, and the need to spend +more time interacting with insurance companies, +school personnel, and various agencies to acquire +appropriate services (Cidav et al. 2012). +Among parents of children with ASD, one +parent (typically the mother) often takes on the +role of the personal case manager, advocates for +the child with ASD, and assumes primary respon- +sibility for transportation to ASD-related appoint- +ments, management of ASD-related problem +behaviors, and before-and-after-school, evening, +weekend, holiday, and summer childcare. +Because many of these primary caregivers often +lose the ability to work a typical workweek out- +side of the home, mothers of children with ASD +earn 56% less than mothers of children in general +and 35% less than mothers of children diagnosed +with other chronic illnesses and disorders +(Zuleyha et al. 2012). This decrease in household +income only adds to the increased financial bur- +den of parents of children with ASD who typically +need to cover the cost of ASD-related therapies, +medical care, specialized school instruction, sum- +mer programs, and day and respite care (Cidav +et al. 2012). +Parents of children with ASD face additional +stressors in their relationships with spouses and +partners and often express fear regarding their +child’s future, particularly after their own deaths. +These parents have expressed, “Who will love and +care for my child with ASD after I pass away? +Will my child be able to live independently, or will +they be placed in a group home or institution? +Who will make sure that they are cared for and +not emotionally, physically or financially +abused?” This combination of demands in care- +giving, challenges with ASD-related problem +behaviors and lost wages can lead parents of chil- +dren with ASD to experience social isolation, +anxiety, and depression (Dyches et al. 2016). It +can be expected that the custodial grandparents of +children with ASD would have a similar +experience. + +Another essential reference group for custodial +grandparents of children with ASD is that of cus- +todial grandparents of children, in general. In +terms of providing long-term social benefits, cus- +todial grandparents of all children prevent those +children from entering an already typically +underfunded, overworked, and insufficient foster +care system (Hayslip et al. 2019). Despite provid- +ing this essential social service, however, research +suggests that custodial grandparents of children, +overall, represent a disproportionate number of +minority group members and are subject to a +variety of challenges and stressors. For example, +custodial grandparents often assume their role in +response to a crisis related to a parent’s divorce, +death, incarceration, mental or physical illness, +military deployment, substance abuse (e.g., +increasingly frequent opioid use), or participation +in child abuse and neglect (Hayslip et al. 2019). +Custodial grandparents of children, overall, are +also more likely to be African American, Latino, +and grandmothers (Hayslip et al. 2019) living on a +fixed income with a chronic illness (or mental or +physical disability) and with less formal education +(Muthiah et al. 2018) when compared to both +partnered and single parents of children, in +general. Custodial grandparents of children, in general, +also report feeling guilt, shame, insecurity, sad- +ness, and frustration (Muthiah et al. 2018) within +the context of their role, as well as anxiety and +depression (Hayslip et al. 2019). This negative +effect may arise from stressors including the crisis +that led up to their caregiving, ambiguity about +their role as grandparent versus parent, uncer- +tainly about their parenting skills, a loss of inde- +pendence and privacy, increased conflict with +their partner or spouse, and increased spending +for their grandchild’s food, clothing, and other +basic needs, challenges in finding same-age cus- +todial peers, and a grandchild’s problem behavior. +However, custodial grandparents of children, in +general (Hayslip et al. 2019), also appear to dem- +onstrate resilience, and they have responded well +to small group intervention. + +Understanding the experience of traditional, +versus custodial, grandparents of children with +ASD offers another point of comparison. Based +upon the largest national survey of traditional +grandparents of children with ASD to date, more +than 1800 grandparents of children with ASD +who responded provided both emotional and +instrumental support to the parents of their +grandchildren with ASD (Hillman et al. 2016). +Specifically, traditional grandparents of children +with ASD reported that they often provide +childcare so that a parent can work outside the +home, respite care, transportation to and from +ASD-related appointments, advocacy and assis- +tance in dealing with school personnel and insur- +ance agencies, and significant financial support +well beyond paying for essentials like food and +clothing. To provide this financial support, many +of these grandparents made significant personal +sacrifices and put off their retirement, went back +to work after they had been retired or partially +retired, raided their retirement and other savings +accounts, and even moved in with, or closer to, +their grandchild with ASD. Findings also indi- +cated that traditional grandmothers of children +with ASD were more likely to provide emotional +and instrumental support, while traditional grand- +fathers of children with ASD were more likely to +provide financial support. +Additional, qualitative analyses of the +responses of more than 1800 traditional grandpar- +ents of a child with ASD regarding their first- +person experience (Hillman et al. 2017) revealed +that these grandparents experienced joys as well +as challenges in their relationship with their +grandchild with ASD. Specifically, these tradi- +tional grandparents enjoyed having a special rela- +tionship with their grandchild, which often +transcended their grandchild’s inability to com- +municate via spoken language. However, this spe- +cial relationship was often tempered by ASD- +related behavior problems like tantrums, melt- +downs, elopement, aggressive behavior, and the +desire to communicate verbally with a non-verbal +grandchild. A central finding was that despite +these challenges, these traditional grandparents +of children with ASD typically reported that they +found solace and joy in celebrating every bit of +progress that their grandchild made, no matter +how small (Hillman et al. 2017). Additional +themes identified by these traditional grandpar- +ents of children with ASD included a newly dis- +covered ability to love their grandchild +unconditionally and the value they typically +found by engaging in ASD-related advocacy. +Additional qualitative findings (Prendeville and +Kinsella 2019) indicate that although traditional +grandparents of children with ASD also experi- +ence regret losing some of their personal freedom +when they commit to helping with their grand- +child’s daily care, they knew they provided an +invaluable service. Unlike the parents of children +with ASD, however, the traditional grandparents +of children with ASD (Hillman et al. 2017; Pre- +ndeville and Kinsella 2019) appear to experience +a “double dose” of worry and fear in which they +express significant fear and anxiety about both the +future of their grandchild with ASD and their +grandchild’s parents, which increased when they +thought about becoming too sick or frail to help or +passing away. + +Although limited, the research available +regarding custodial grandparents of children +with ASD is drawn primarily from qualitative +studies (e.g., Hillman and Anderson 2019). Find- +ings suggest that, like traditional grandparents of +children with ASD, the custodial grandparents of +a child with ASD experience both challenges and +joys in their dual, and often conflicting, role as +grandparent and surrogate parent. Specifically, +custodial grandparents of children with ASD +reported that problematic issues with their +grandchildren’s parents (i.e., their adult child +and/or their adult child’s partner) serve as one of +their greatest challenges. Challenges include deal- +ing with the original crisis that led to them assum- +ing their role as primary caregiver, obtaining legal +custody of their grandchild with ASD, and con- +flicts that often arose during visitation with the +child’s parent or parents. The custodial grandpar- +ents of children with ASD also reported that care- +giver burden, including 24/7 demands, +challenging ASD-related problem behaviors like +tantrums and eloping, insufficient ASD-related +services, increasing financial demands, social iso- +lation, and related fears for their grandchild’s +future, represented another significant challenge. +However, custodial grandparents of children +with ASD also report that they experience joy +and positivity in their role (e.g., Hillman and +Anderson 2019). Sources of joy include learning +to love unconditionally; to celebrate each time +their grandchild with ASD made progress, no +matter how small or incremental; to focus on the +positive; and to draw upon their religious and +moral beliefs (e.g., my grandchild is a gift from +God, and taking care of him is the right thing to +do) during difficult times. Custodial grandparents +of children with ASD also report developing +wisdom as a function of their role, including the +acknowledgment that it really does “take a vil- +lage” including friends, teachers, and various pro- +fessionals to raise a child with ASD and the +importance of advocacy and education about +ASD for their both own grandchild and for society +as a whole. + +In sum, research suggests that custodial grand- +parents of children with ASD face significant +stressors and burden, above and beyond those of +parents of children with ASD, caregivers of chil- +dren with other chronic illnesses and disabilities, +custodial grandparents of children overall, and +traditional grandparents of children with ASD. +The custodial grandparents of children with +ASD often face additional struggles with living +on a fixed or limited income, feeling conflicted +about their dual role as parent and grandparent, +having few peers, having their own health prob- +lems, experiencing a “double dose” of worry for +both their grandchild with ASD and their grand- +child’s parents, and not having their own grand- +parents to help them with finances or respite care. + +Custodial Grandparents of Children with Autism Spectrum Disorder, Table 1 Websites for custodial grandparents of children with ASD +| Website Name | URL | +|:-----------------------------------------------------|:-------------------------------------------------------------------------------------------------------------------------------------------------------------| +| AARP, Raising Grandchildren: Finances | https://www.aarp.org/relationships/friends-family/info-08-2011/grandfamilies-guide-finances.html | +| Asperger/Autism Network, How to Handle Meltdowns | https://www.aane.org/how-to-handle-meltdowns/ | +| Autism Speaks, A Grandparent’s Guide to Autism | https://www.autismspeaks.org/tool-kit/grandparents-guide-autism | +| CAR Autism Roadmap, The Children’s Hospital of Philadelphia Research Institute | https://www.carautismroadmap.org/resources/ | +| Generations United, Grandfamilies | https://www.gu.org/explore-our-topics/grandfamilies/ | +| Grandparent Autism Network | https://ganinfo.org/ | +| Grandparents Raising Grandchildren | https://www.helpguide.org/articles/parenting-family/grandparents-raising-grandchildren.htm | +| National Resources for Grandfamilies, Grandfamilies | http://www.grandfamilies.org/ | +| Protections and Advocacy Systems, Inc. | https://www.wypanda.com/ | +| Understood, When Grandparents Are Caregivers or Guardians of Kids With Learning and Attention Issues | https://www.understood.org/en/family/managing-everyday-challenges/issues-with-caregivers-babysitters/when-grandparents-are-caregivers-or-guardians-of-kids-with-learning-and-attention-issues | + +Future Directions +Significant gaps in the literature regarding custo- +dial grandparents of children with ASD will be +identified here in the hope that they could be +addressed with future research, practice, and pol- +icy changes. For example, it would be helpful to +obtain an accurate count of the custodial grand- +parents of children with ASD in the USA and +around the world, including their demographic +characteristics. Because most research regarding +the custodial grandparents of children with ASD +available has been conducted with convenience +samples, snowball sampling, and primarily US, +White, well-educated custodial grandparents, +research derived from nationally representative +samples would be ideal. Consistent with calls to +acknowledge the heterogeneity of custodial +grandparents of children, in general (Hayslip +et al. 2019), it also remains essential to acknowl- +edge the heterogeneity of custodial grandparents +of children with ASD. Additional research can +focus upon the experience and needs of custodial +grandparents of children with ASD from various +understudied and likely underserved groups +including immigrants, LGBT adults, and African +American, Alaskan Native, American Indian, +Asian, Latino, Middle Eastern, and Pacific +Islander adults. + +Longitudinal studies of custodial grandparents +of children with ASD are needed, and both quan- +titative and qualitative approaches to research +should be valued. Consistent with current research +on custodial grandparents (Hayslip et al. 2019) of +children with ASD (Hillman and Anderson 2019), +future investigations should continue to examine +and highlight custodial grandparents’ resilience, +wisdom, and other personal strengths, as well as +their significant challenges. Future research +should also investigate the extent to which custo- +dial grandparents of children with ASD might use +alcohol and other substances for coping, be phys- +ically abused or injured by their grandchild with +ASD, and engage in child abuse, themselves. +Because societal attitudes toward grandparents +who serve as primary caregiver for their +grandchildren have traditionally been negative +(see Hayslip et al. 2019), it would be helpful to +examine the attitudes maintained among case +managers, teachers and other school personnel, +judges and attorneys, daycare providers, and +other individuals who might work with custodial +grandparents of children with ASD. It also would +be helpful to examine the extent to which custo- +dial grandparents, versus parents, of a child with +ASD approach that child’s transition to adulthood +including their pursuit of job skills, higher educa- +tion, and options for group and independent living +outside the family home. In terms of policy and practice, a variety of +recommendations can be offered to help address +the needs of custodial grandparents of children +with ASD (e.g., Hillman et al. 2019). Because +these grandparents have identified problems +with establishing legal custody of their +grandchild with ASD, as well as managing +parental contact and behavior during visitation, +legal advocates and care providers can offer edu- +cation and assistance in relation to legal custody, +guardianship, visitation rights, permissive visi- +tation, and supervised visitation, which can vary +significantly by state. Individual states can spon- +sor and promote kinship navigators, profes- +sionals trained specifically to connect custodial +grandparents with state and local ASD- and +custody-related resources including legal advo- +cates in family and tax law. For example, many +custodial grandparents of children with ASD +may not know that they qualify for kinship +guardianship payments, foster care payments, +or state-supported child health insurance, much +less how to apply for those benefits. + +Because custodial grandparents have expressed signifi- +cant fears about who will take care of their +grandchild after their death (Hillman et al. +2019), these grandparents can be directed to +local, state, and national resources that assist in +long-term care planning; the creation of a special +needs trust and various custodial accounts can +help ensure the quality of a child’s life with ASD +long after a custodial grandparent passes away. +Intergenerational programming for custodial +grandparents and their grandchild with ASD +could also be offered by local Area Agencies on +Aging (e.g., senior centers) and Title VI Native +American aging programs, perhaps in conjunction +with professionals and student trainees from local +colleges and universities. Such intergenerational +programming could introduce these custodial +grandparents to everything from case manage- +ment services, legal advocacy for custody and +estate planning, the National Family Caregivers +Support Program, management of ASD-related +problem behaviors, nutrition and feeding services, +financial support (e.g., potential kinship care +grants, Supplemental Security Income), and +in-person and online peer support groups, to +state supported respite care and transportation +services when available. Ideally, such +intergenerational programs would feature simul- +taneous programming for the grandparents’ chil- +dren with ASD including childcare, social skills +training, music and art therapy, and other activities +and services. + +Addressing the challenges faced by custodial +grandparents of children with ASD, while supporting +their resilience and benefitting from their wisdom, +appears essential. + +See Also +* Advocacy +* Applied Behavior Analysis (ABA) +* Asperger Syndrome +* Autism Speaks +* Behavior +* Challenging Behavior +* Child Abuse in Autism +* Court Decision (ASD Related) +* Developmental Disabilities +* Disability +* Estate Planning +* Family Burden +* Family Therapy +* Guardianship +* Health Disparities +* Maladaptive Behavior +* Pervasive Developmental Disorder Not Other- + wise Specified +* Qualitative Versus Quantitative Approaches +* Related Services +* Respite Care +* Self-Care +* Support Trust +* Team Approach + +Daily Living Skills +Aaron Stabel +The M.I.N.D. Institute, University of California +Davis Medical Center, Sacramento, CA, USA + +Synonyms +Activities of daily living; Daily self-care activi- +ties; Home living skills; Self-care; Self-help + +Definition +The term “daily living skills” refers to a wide +range of personal self-care activities across +home, school, work, and community settings. +Most daily living skills, like food preparation +and personal hygiene, need to be performed on +a regular basis to maintain a reasonable level of +health and safety. Adaptive functioning, or an +individual’s ability to care for self and function +independently, is a primary consideration +when supporting individuals with autism and +other disabilities. Daily living skill activities +include: +* Personal hy_giene and grooming +* Dressing and undressing +* Meal preparation and feeding +* Mobility and transfer +* Toileting +* Housekeeping +* Laundry +* Home safety +* Health and medication management +* Leisure time and recreation +Children’s abilities to care for themselves have +been found to correlate with intellectual function- +ing and may be a strong predictor of future inde- +pendence (Carter et al. 1996). Individuals who +cannot independently carry out these necessary +self-help routines are at greater risk for long- +term institutionalization, require more intensive +living supports, and are less likely to be employed +(Wehman and Targett, 2004). Assessing adaptive +functioning is required when measuring intelli- +gence, diagnosing intellectual disability, and +determining appropriate treatment goals +(Goodlin-Jones and Solomon 2003). The most +widely used instrument to assess adaptive behav- +ior functioning is the Vineland Adaptive Behavior +Scales (Sparrowet al. 1984). Selecting skills to +teach should focus on the priority tasks required +for independent domestic and community living +(Wehman and Targett 2004; National Research +Council 2001). Daily living skills are usually +taught using strategies from applied behavior +analysis, specifically task analysis, shaping, +chaining, and positive reinforcement. Teaching +individuals with autism to generalize learned +tasks across settings, people, and materials +remains an important aspect of intervention plan- +ning when teaching daily living skills. + +See Also +* Adaptive Behavior +* Adaptive Behavior Scales +* Chaining +* Functional Assessment and Curriculum for + Teaching Everyday Routines +* Functional Life Skills +* Independent Living +* Positive Reinforcement +* Task Analysis +* Vineland Adaptive Behavior Scales (VABS) + +Daily Routines +Kimberly Kroeger-Geoppinger +Cincinnati Children’s Hospital Medical Center, +Cincinnati, OH, USA + +Synonyms +Activity schedules; Daily activities; Routine +events; Schedules; Visual schedule + +Definition +Daily routine is a schedule, custom, or habit that is +known to occur similarly on a daily frequency. Daily +routines are often preferred by children and adults +diagnosed with autism in order to structure their day +and provide predictability. Daily routines can be +inherently known by the individual without support +or review by an outside person, or are scheduled out +by another and presented verbally or visually. Visual +schedules are often used to act as an aid in convey- +ing the day’s event and are often presented pictori- +ally (as with picture icons) or in written form (as in a +checklist). Consistent use of daily routines often +helps reduce problematic behavior due to issues +with transition from activity to activity. Daily rou- +tines can be expanded to teach and/or guide most +events that occur daily on a large scale (i.e., activities +to occur from morning to night) or for specific +events (e.g., hand washing, putting away laundry). + +See Also +* Adaptive Behavior +* Daily Living Skills +* Functional Assessment and Curriculum for + Teaching Everyday Routines +* Functional Life Skills +* Prompt Hierarchy +* Prompting +* Visual Schedule +* Visual Supports + +D-Amphetamine +Karthikeyan Ardhanareeswaran +Autism Program, Child Study Center, Yale School +of Medicine, New Haven, CT, USA +Program in Neurodevelopment and Regeneration, +Yale School of Medicine, New Haven, CT, USA +Department of Molecular, Cellular, and +Developmental Biology, Yale University, +New Haven, CT, USA + +Synonyms +Adderall; Dexamfetamine + +Definition +D-amphetamine, or dextroamphetamine, is a +psychostimulant primarily used for the treatment +of ADHD and narcolepsy in children and adults. +The drugs work by increasing the release of nor- +epinephrine, serotonin, and dopamine from their +storage sites within presynaptic nerve terminals +while simultaneously also competing for reuptake +by their respective transporters, thus preventing +the neurotransmitters from being reuptaken effec- +tively. This neurotransmitter release is facilitated +by the activation of a membrane transport system +that brings in extracellular amphetamine in +exchange for pumping out the above neurotrans- +mitters. D-amphetamine may also be a serotonin +receptor direct agonist. While there is little to no +substantial evidence for the effectiveness of +D-amphetamine in treating ASD, use of the drug +in ASD patients is high due to the high comorbid- +ity of the disorder with ADHD. Side effects of this +drug may include irregular heartbeat, headache, +dizziness, weight loss, dry mouth, and others. + +See Also +* ADHD +* Amphetamine + +D-Cycloserine: Definition +Karthikeyan Ardhanareeswaran +Autism Program, Child Study Center, Yale School +of Medicine, New Haven, CT, USA +Program in Neurodevelopment and Regeneration, +Yale School of Medicine, New Haven, CT, USA +Department of Molecular, Cellular, and +Developmental Biology, Yale University, +New Haven, CT, USA + +Synonyms +Seromycin + +Definition +D-cycloserine is a partial glycineB site agonist that +binds to the strychnine-insensitive glycine binding +site on the NMDA receptor, agonizing the NMDA +receptor, a glutamate receptor subtype. The NMDA +receptor functions in synaptic plasticity. Alterations +in synaptic plasticity are believed to be at the crux of +ASD pathogenesis. D-cycloserine has been shown to +partially reverse social deficits in mouse models of +autism. Similar benefits have been shown in human +subjects as well, but further validation is still +required. Because of its actions on the NMDA recep- +tor, D-cycloserine is heavily studied in processes of +fear conditioning and extinction as well as schizo- +phrenia. In many of these studies, it is used in con- +junction with behavioral therapy to allow greater +control over any ensuing alterations in synaptic plas- +ticity. Currently, D-cycloserine is only approved for +the treatment of tuberculosis. Side effects include +headache, drowsiness, dizziness, or shaking. + +Deaf-Blind +Jennifer McCullagh and Deborah Weiss +Department of Communication Disorders, +Southern Connecticut State University, +New Haven, CT, USA + +Synonyms +Sensory impairment + +Short Description or Definition +Deaf-blind individuals have varying degrees of a +combination of both hearing and visual impair- +ments. In the United States, the legal definition of +blindness is 20/200 in the better eye. An individ- +ual with a threshold exceeding 90 dB HL is con- +sidered to be deaf. Individuals who are deaf-blind +have communication as well as mobility deficits. +This dual sensory impairment results in the inabil- +ity to use one sensory modality to compensate for +the other. Services required for individuals who +are deaf-blind are different than those required for +individuals who are either deaf or blind. Commu- +nication and language development are the pri- +mary deficits in individuals with deaf-blindness; +however, development of social-affective, cogni- +tive, and motor skills is also affected. Individuals +with deaf-blindness also exhibit stereotyped +behaviors, similar to those seen in children with +autism spectrum disorders. + +Categorization +Deaf-blindness may be congenital or acquired +resulting in a heterogeneous population. It is +important to differentiate between these two +groups; those with congenital deaf-blindness +have additional handicaps and typically require a +substantially greater amount of rehabilitation, +including programs that are individually tailored +(Rönnberg and Borg 2000). + +Epidemiology +It is estimated that approximately 10,000 children +(ages birth to 22 years) in the United States are +classified as deaf-blind (Rönnberg and Borg 2000; +The National Consortium on Deaf-Blindness +[NCDB] 2008). The adult deaf-blind population +numbers are estimated at 35–40,000 individuals +(Watson and Taff-Watson 1993). +Congenital deaf-blindness may be caused by +hereditary or chromosomal syndromes and disor- +ders, prenatal or congenital complications, com- +plications of prematurity, and undiagnosed +causes. Some common hereditary or chromo- +somal causes are CHARGE syndrome, Usher syn- +drome, and Down syndrome. Cytomegalovirus +(CMV) and microcephaly are some prenatal or +congenital complications that may lead to deaf- +blindness. In the past, maternal rubella was the +leading cause of deaf-blindness. The majority of +cases of deaf-blindness are acquired; a variety of +causes are responsible such as meningitis, +inflicted brain damage, and aging of the sensory +organs (Rönnberg and Borg 2000). +There have been very few reports on the com- +bined disorders of autism and deaf-blindness. The +prevalence of deaf-blind individuals with autism +is unknown, although it is estimated to be small. +Further, because etiological factors and symptoms +such as impaired social interaction and communi- +cation impairment are associated with both disor- +ders, it is challenging to differentially diagnose +between the two. + +Natural History, Prognostic Factors, and +Outcomes +The history of service for the population of indi- +viduals with deaf-blindness is sharply divided +between the pre- and post-rubella epidemic of +1964–1965. The first citations of education with +this population appeared in the mid-1800s with +Laura Bridgman described as the first deaf-blind +individual to learn language at the Perkins School +for the Blind. Helen Keller was an even more +recognized and influential figure in the success +of educating deaf-blind individuals. However, +even through the 1960s, limited education was +available for this population, and individuals +were often placed in residential schools or asy- +lums. Congressional legislation, approved in the +1970s and beyond, which mandated education for +children with disabilities, had a significant effect +in advancing the education of this population +(NCDB 2012). + +Clinical Expression and Pathophysiology +This severe sensory deficit results in communica- +tion disorders and subsequent handicaps in edu- +cation, social and cultural development, and the +acquisition of information. The tactile sense is +commonly utilized by these individuals for com- +munication as well as for feelings of security and +control. Other methods of compensation include +use of the cutaneous senses and vibration for +sound localization. Few studies have explored +the psychosocial aspects of being deaf-blind and +those that do typically focus on adaptation. +Depression in adolescents and psychosis has +been reported (Rönnberg et al. 2002). + +Evaluation and Differential Diagnosis +The evaluation process for deaf-blindness is +focused on determining the extent to which the +auditory and visual systems are impaired. Since +the characteristics of deaf-blindness are similar to +those of autism spectrum disorders, determining if +comorbid autism spectrum disorders exist can be +challenging. These individuals are also typically +difficult to test; therefore, identification is further +complicated and standardized tests are +nonexistent (Vernon 2010). There tends to be an +overdiagnosis of autism in individuals with deaf- +blindness leading to unsuitable intervention +(Hoevenaars-van den Boom et al. 2009). These +authors studied 10 individuals with deaf- +blindness and intellectual disability in order to +determine if they could differentiate which of +these individuals also had autism (which had +been previously diagnosed). They utilized an +instrument that they had developed specifically +for this purpose. Results indicated the presence +of a significantly greater number of impaired +behaviors among the individuals with autism in +reciprocity of social interaction, quality of initia- +tives to contact, and use of adequate communica- +tive signals and functions. The authors concluded +that their instrument has promise in terms of its +utilization in identifying individuals with autism +within the deaf-blind population. Operant condi- +tioning techniques have also been used success- +fully in the assessment of this population +(Rönnberg and Borg 2000). + +Treatment +Treatment for deaf-blindness is typically focused +on improving the communication, self-help skills, +and mobility of the individual. Since great vari- +ability exists from individual to individual, it is +imperative to establish the degree to which either +the auditory system, visual system, or both can be +utilized to enhance communication. The predom- +inant therapeutic model is behavior modification +(Rönnberg and Borg 2000). It is recommended +that the curriculum addresses five main areas: +(1) communication skills, (2) cognitive develop- +ment, (3) social and emotional development, +(4) motor and self-care skills, and (5) sensory +development (Murdoch 1986). +Research conducted on communicative and +linguistic treatment primarily focuses on the +“Tadoma” method in which the Tadoma user +places his/her hand on the speaker’s face in a +proscribed position. Through the use of percep- +tual cues, skilled Tadoma users are able to +achieve a relatively high level of comprehension +of spoken speech. Intelligibility of their speech +production is 60–70%; however, the rate of +speech is slower by about 50%. Other methods +of communication include the T-code, sign lan- +guage, and textured symbols (Rönnberg and +Borg 2000). + +See Also +* Blindness +* CHARGE Syndrome +* Deafness +* Sensory Processing +* Sensory Stimuli + +Deafness +Jennifer McCullagh +Department of Communication Disorders, +Southern Connecticut State University, New +Haven, CT, USA + +Synonyms +Profound hearing impairment + +Short Description or Definition +“Deafness” is a term that has varying definitions but +is characterized by severe-to-profound deficits in +the ability to hear. Deaf with a capital “d” is a +term used to describe individuals with severe-to- +profound hearing loss resulting in little to no usable +hearing, even with the use of amplification devices +(i.e., hearing aids, assistive listening devices, etc.). +Furthermore, individuals who are Deaf belong to +the Deaf culture which uses American Sign Lan- +guage (ASL) as their primary mode of communica- +tion. Deaf with a lowercase “d” refers to individuals +with severe-to-profound hearing loss who use +amplification devices and use oral communication +as their primary mode of communication. + +Categorization +Degrees of Hearing Impairment in dB HL +| | | +|:----------------|:---| +| Normal | 10 to +15 | +| Minimal | 16–25 | +| Mild | 26–40 | +| Moderate | 41–55 | +| Moderately severe | 56–70 | +| Severe | 71–90 | +| Profound | 91+ | + +Epidemiology +According to the National Institute of Deafness +and Other Communication Disorders (NIDCD +2010), approximately 2–3 in every 1,000 children +born in the United States are born with deafness or +some degree of hearing impairment. Hearing loss +occurs in approximately 18% of 45- to 64-year- +olds, 30% of 65- to 74-year-olds, and 47% of +75-year-olds and older. More systematic research +needs to be done regarding the incidence and +prevalence of deafness in the population with +autism. + +Natural History, Prognostic Factors, and +Outcomes +Individuals with severe-to-profound hearing loss +are not able to hear speech sounds and most envi- +ronmental sounds without amplification. If indi- +viduals with this degree of hearing loss are not +treated in the first year of life, severe speech and +language delays may occur. Furthermore, learning +and attention disorders may often arise. Individ- +uals with severe-to-profound hearing impairment +likely need hearing aids or cochlear implants, +speech and auditory training/therapy, and special +education services. +Prior to the onset of the Early Detection and +Intervention (EDHI) program in the late 1980s/ +early 1990s, children with hearing impairment +were not typically diagnosed until age 2 or +3 years when speech and language delays +were apparent. Since the beginning of the +EDHI program, children with hearing impair- +ment are being identified and treated earlier +which is important for speech and language +development (either spoken language or Amer- +ican Sign Language (ASL)). Early detection +and intervention are critical because a sensitive +period exists for speech and language +development. The first few years of life is +when the foundation for speech and language +is established, and if this period is missed due to +an unidentified severe-to-profound hearing +loss, the child will not acquire speech and/or +language. The development of oral speech and +language is possible with appropriate amplifi- +cation or cochlear implantation in conjunction +with speech and language therapy. In postlingually deafened adults, appropriate +amplification is critical to their ability to commu- +nicate with spoken language. In order to perceive +what is being said, as well as monitor what their +own speech, these individuals need to be fit with +hearing aids, and/or assistive listening devices, or +with cochlear implants. + +Clinical Expression and Pathophysiology +Deafness occurs as a result of a sensorineural or +mixed (conductive and sensorineural) hearing +loss. Conductive hearing losses are those that +occur due to pathology in the outer or middle +ear. Conductive hearing losses alone only result +in at most; moderate hearing losses, however, in +conjunction with sensorineural hearing losses can +result in severe-to-profound hearing loss. +Sensorineural hearing losses occur as a result of +pathology (typically hair cell loss) in the cochlea +or auditory nerve fibers. +Deafness can be either congenital or +acquired. Congenital deafness can be the result +of genetic factors, maternal illness, and/or infec- +tion. Some examples of syndromes associated +with hearing impairment are CHARGE syn- +drome, Usher syndrome, and Waardenburg’s +syndrome. Examples of maternal illness and/or +infection include rubella, cytomegalovirus +(CMV), diabetes, hypoxia, syphilis, and toxe- +mia. Acquired deafness may be the result of +ototoxic medications, infection, meningitis, +and encephalitis, or the cause may be unknown. +Depending on the cause of the hearing loss, the +impairment may, or may not, be progressive in +nature. Once hearing impairment is established, +annual hearing evaluations are generally +recommended. + +Evaluation and Differential Diagnosis +The goal of hearing evaluations is to assess the +outer, middle, and inner ears. The audiologist will +first perform otoscopy to determine if the outer ear +(pinna and external auditory meatus) and tym- +panic membrane have normal appearances. Then +tympanometry is completed to determine the sta- +tus of the middle ear. Finally, behavioral and/or +electrophysiologic testing is completed to deter- +mine hearing sensitivity at the frequencies impor- +tant for speech. In behavioral testing, the goal is to +complete a pure-tone audiogram which is a graph- +ical depiction of the hearing thresholds of the +octave frequencies from 250 to 8,000 Hz. Speech +reception threshold and word recognition testing +are also done to determine threshold to speech +stimuli as well as how accurately words are +perceived. +The type of hearing evaluation one undergoes +depends on a number of factors, including age and +ability to respond to the tonal and speech stimuli. +Evaluation methods can be either behavioral or +electrophysiologic. Behavioral tests require the +listener to respond in some way to the tonal or +speech stimuli (i.e., raise hand, turn head, repeat +back words, etc.). Some examples of behavioral +test procedures are behavioral observation audi- +ometry (BOA), visual reinforcement audiometry +(VRA), conditioned play audiometry, and stan- +dard audiometry. Behavioral observation audiom- +etry occurs when the audiologist plays tonal and +speech stimuli through the sound field or head- +phones and then watches for a response from the +individual. This response might be the cessation +of crying or cooing, eyes widening, or turning the +head. Visual reinforcement audiometry occurs +when lighted puppets positioned in boxes directly +above the left and right speakers in the booth are +illuminated when the stimulus is presented. This is +done repeatedly until the individual is trained to +look in the direction of the stimulus. During the +actual testing, the stimuli are presented and the +light is turned on only after the individual turns +and looks toward the light. In conditioned play +audiometry, hearing thresholds are obtained by +using toys such as blocks. For example, the indi- +vidual is trained to drop a block in a bucket every +time they perceive the beeping sound. Finally, +hearing thresholds using standard audiologic pro- +cedures are obtained by having the individual +raise their hand or push a button every time they +perceive the tonal stimuli. Physiologic tests, like the otoacoustic emis- +sions (OAEs) and auditory brainstem response +(ABR), do not require a behavioral response +from the listener and are thus commonly used in +newborn hearing screenings, infant hearing tests, +as well as hearing tests on individuals who are +unwilling, or unable, to respond to behavioral +tests. Otoacoustic emissions are generated by the +hair cells in the cochlea, so if the hair cells are +absent or not functioning properly, the otoacoustic +emissions will be absent or reduced. + +Treatment +In Deaf populations, no “treatment” is sought +since deafness is not considered a problem. Indi- +viduals who are Deaf are taught American Sign +Language (ASL) and become immersed in Deaf +culture. These individuals use manual communi- +cation to interact in society. +Individuals who are deaf will often use hearing +aids and/or assistive listening devices. With the +advancement in technology, individuals who do +have a severe-to-profound hearing loss and who +do not receive benefit from amplification may get +cochlear implants. Children as young as +12 months can receive cochlear implant surgery. +Either method (hearing aids or cochlear implanta- +tion) must be combined with speech and language +therapy in order to train the system to listen as well +as produce intelligible speech. +Prognosis, evaluation methods, and treatment +of individuals with autism and deafness are con- +tingent upon a number of factors. Some of these +factors include the severity of autism, etiology of +the hearing loss, comorbid disorders, mode of +communication, and candidacy for hearing aids +and/or cochlear implants. Ultimately, a collabora- +tive approach should be taken when treating indi- +viduals with autism and deafness. + +See Also +* American Sign Language (ASL) +* Auditory Brainstem Response (ABR) +* Auditory System +* Cochlea +* Hearing + +Deborah Fein +Diana L. Robins +AJ Autism Drexel Institute, Drexel University, +Philadelphia, PA, USA + +Name and Degrees +Deborah Fein, Ph.D. +University of Connecticut +Department of Psychology, U-20 +Storrs, CT, USA + +Major Appointments (Institution, +Location, Dates) +University of Connecticut, Storrs, CT, 1988 – +current +Boston University School of Medicine, Boston, +MA, 1979–2000 + +Major Honors and Awards +University of Connecticut Board of Trustees Dis- +tinguished Professor, 2003– +Distinguished Contribution to the Science of Psy- +chology award, Connecticut Psychological +Association, 2012 +Edith Kaplan Award for Outstanding Contribu- +tions to Neuropsychology, 2012 + +Landmark Clinical, Scientific, and +Professional Contributions +Deborah Fein has published more than 150 articles +and chapters on autism spectrum disorder (ASD) +since the late 1970s. Her major contributions span +a number of areas, including characterizing chil- +dren who show optimal outcomes after diagnosis +and treatment for autism, screening to promote +early detection of autism, developing theoretical +models of autism, and writing seminal papers +on topics such as the role of oxytocin in autism. +Dr. Fein’s elucidation of the primacy of social +deficits in autism, described in a 1986 paper in +the Journal of the American Academy of Child +Psychiatry, as well as her theories on the neuro- +psychological underpinnings of autism, seen in +her 1996 paper in Psychological Review, and her +edited volume, The Neuropsychology of Autism, +as well as her recent honor as the Birch Memorial +Lecture speaker at the 2015 annual meeting +of the International Neuropsychological Society, +have disseminated her work to a broad audience. +Her contributions to early screening, as +a co-author of the Modified Checklist for Autism +in Toddlers (M-CHAT), and the M-CHAT, +Revised, with Follow-Up (M-CHAT-R/F) signifi- +cantly impacted the early detection of autism. Her +subsequent work examining the minority of chil- +dren with a clearly documented history of autism, +but no current symptoms, was ground breaking in +its characterization of children who achieve this +“optimal outcome” and no longer demonstrating +deficits associated with their history of autism. +Additionally, her work reaches beyond the +professional and academic audiences that access +scientific journals, in her publication of a book for +educators on adapting classroom strategies for +children with autism, and her newest book offer- +ing parents activities to do at home with very +young children at risk or diagnosed with autism. +She is currently developing a website that will be +available for free to parents, to teach them princi- +ples of behavioral teaching and stimulating +attachment. + +Short Biography +Dr. Deborah Fein, born on March 21, 1947, is a +neuropsychologist who has focused much of her +career studying autism. Her theoretical and empir- +ical work in autism was heavily influenced by her +training at the Boston Veteran’s Affairs Hospital, +under the mentorship of Dr. Edith Kaplan (with +whom she published several versions of the +Wechsler tests as a process instrument), and by a +postdoctoral fellowship at BU School of Medicine +with Dr. Al Mirsky. In addition to her scientific +contributions, Dr. Fein has trained and mentored +more than 50 trainees in autism and neuropsychol- +ogy, many of whom now hold faculty positions in +academic or medical institutions, facilitating her +tremendous influence on the field. Dr. Fein lives in +Western Massachusetts with her husband, and +they have two daughters. + +See Also +* Modified Checklist for Autism in Toddlers + (M-CHAT) +* Optimal Outcome +* Recovery in Autism + +Declarative Memory +Naomi Schneider +College of Education and Human Ecology, The +Ohio State University, Columbus, OH, USA + +Synonyms +Explicit memory + +Definition +Declarative memory is a type of long-term memory +and is memory for facts, data, words, etc. +Declarative memory can be divided into three +categories: episodic, semantic, and lexical. Episodic +memory includes memory for personal events or +experiences. Episodic memory is primarily learned +consciously and is linked to a certain time and +place. Examples include specific events such as +walking to the store or cooking dinner. Semantic +memory refers to general knowledge or facts, inde- +pendent of experience. Examples include facts +about historical events or types of cars. Lexical +memory is the knowledge for words. It has been +observed that some individuals with autism have +enhanced semantic and lexical memory abilities. + +See Also +* Episodic Memory +* Explicit Memory +* Memory +* Semantic Memory + +Decoding Skills +Diana B. Newman +Communication Disorders Department, Southern +Connecticut State University, New Haven, CT, +USA + +Synonyms +Word recognition + +Definition +Decoding refers to the word recognition processes +in which written words or print are transformed +into spoken words. This process is commonly +referred to as “sounding out words.” Proficient +decoding requires rapid letter recognition, knowl- +edge of sound-letter correspondences, phonemic +awareness, and word attack skills (i.e., analysis/ +segmenting and synthesis/blending of the letter- +sound correspondences). Accurate and fluent +decoding allows for comprehension of words +both in isolation and in context. Many individuals with autism spectrum dis- +orders (ASD) are able to mentally represent at +least some single word meanings; that is, read +words in isolation and understand their mean- +ings. Some individuals with ASD spontaneously +read words with excellent proficiency at an unex- +pectedly early age (referred to as hyperlexia); +however, it is the ability to read beyond decoding +individual words (i.e., reading in context) that +presents greater difficulty for individuals +with ASD. + +Deep Pressure Proprioception +Touch Technique +Winifred Schultz-Krohn +Department of Occupational Therapy, San José +State University, San José, CA, USA + +Synonyms +Wilbarger Protocol + +Deep pressure proprioceptive touch technique (DPPT): +Previously known as the Wilbarger Pro- +tocol, DPPT was developed by two occupational +therapists, Patricia and Julia Wilbarger, to +address sensory defensiveness. This technique +requires specific training and includes three +parts where first a client’s arms, back, and legs +are brushed firmly with a soft-bristled brush sim- +ilar to a surgical brush. Then joint compressions +are applied at specified joints throughout the +body, and finally a sensory diet is prescribed to +address sensory defensiveness. This technique +has been effectively used to reduce sensory +defensiveness and has been linked to bringing +salivary cortisol levels closer to normal values +in children with sensory processing deficits. The +cortisol levels have been used as a measure of +stress in children, and with the use of the DPPT, +the levels of cortisol approached a normal level. +The recommended frequency for this technique +is every 2 h during waking hours for 2 weeks to +see diminished sensory defensive behaviors. +A pilot investigation using the DPPT was suc- +cessful in reducing self-injurious behaviors in +women with depression and a history of self- +injurious behaviors. A follow-up 9 months after +providing DPPT found women reported a +decrease in self-harming behaviors. + +Deficits in Attention, Motor +Control, and Perception +Fred R. Volkmar +Child Study Center, Irving B. Harris Professor of +Child Psychiatry, Pediatrics and Psychology, Yale +Child Study Center, School of Medicine, Yale +University, New Haven, CT, USA + +Synonyms +DAMP; DAMP syndrome + +Definition +DAMP syndrome is a diagnostic concept devel- +oped by Gillberg and colleagues in Sweden and +used more frequently in Scandinavia. The term +refers to a disorder in which aspects of attention- +deficit disorder and motor coordination difficul- +ties are present. A close link to PDD-NOS/autism +spectrum disorder has been suggested (Gillberg +et al. 1993; Kadesjoe and Gillberg 1999). One +complexity in this regard is the potential for atten- +tional difficulties to lead to problems with peers +and social interaction; this is particularly the case +if some degree of language difficulty is involved +(Towbin 2005). Issues of diagnosis can also be +complex in children with significant intellectual +disability, attentional, and motor problems, +although it has been suggested that the DAMP +concept be restricted to cases where the individual +has an IQ no lower than the mild-moderate range +of disability. Although the topic has not been the +focus of widespread research, the issue of associ- +ations between autism spectrum disorder and and +attentional problems is one of the great interests +for both research and clinical purposes (Davis and +Kollins 2012). + +See Also +* Attention Deficit/Hyperactivity Disorder +* Developmental Coordination Disorder +* Pervasive Developmental Disorder Not Other- + wise Specified + +Definition: Metaphor +Laura Foran Lewis +College of Nursing and Health Sciences, +University of Vermont, Burlington, VT, USA + +Synonyms +Figurative language + +Definition +A type of figurative language in which objects +or actions are compared in a way that is implied +but not literal, such as “She has a heart of gold,” +or where one thing is considered as representa- +tive of the other as in symbolism (Glucksberg +2001). Typically developing children usually +begin to understand and produce simple meta- +phors as early as 2 years of age and progress to +more advanced comparisons with age, showing +significant improvements around age 4–5 years +and continuing to develop these skills into +adulthood (Stites and Ozcaliskan 2012). Chil- +dren on the autism spectrum with autism dem- +onstrate poorer comprehension of figurative +language than their typically developing peers +(Kalandadze et al. 2019). +Two theories are proposed to explain diffi- +culties in interpreting figurative language in +individuals with autism. The first theory sug- +gests that this is due to a cognitive deficit in +“theory of mind,” or the ability to attribute men- +tal states to self and to others, which leads to +impairments in imagination, socialization, and +communication (Happe 1995). Since metaphor +requires the listener to be able to understand the +speaker’s intention, an individual with autism +might interpret the language literally and be +unable to infer the intended meaning of the +metaphor. The second theory proposes that +poor figurative language comprehension is +related to deficits in structural language skills, +including vocabulary and syntax (Whyte +et al. 2014). +Figurative language is ubiquitous in social +communication, and, therefore, challenges +interpreting figurative language can affect social +relationships, social participation, and educational +achievement (Kalandadze et al. 2016). + +See Also +* Cognitive Flexibility +* Figurative Language +* Metaphoric Language + +DeGangi-Berk Test of Sensory +Integration +Tara J. Glennon +Occupational Therapy, Quinnipiac University, +Hamden, CT, USA +Centre of Pediatric Therapy, Fairfield and +Wallingford, Wallingford, CT, USA + +Synonyms +DeGangi-Berk; TSI + +Description +This assessment tool offers an objective method to +examine the sensory functioning of children aged +3–5 years. This 36-item assessment published in +1983 intended to provide an objective method to +determine whether, and to what extent, a pre- +school child had sensory processing deficits so +that the practitioner did not need to rely on clinical +judgment alone. At that time, there were only +measurements of motor functioning with no +other instrument sufficiently sensitive to deter- +mine if these motor issues were cause by an +underlying sensory integrative difficulty. +Once the items are scored, they are calculated +to establish an overall score of sensory integrative +functioning (total test score), as well as a score +within each of the following subdomains of sen- +sory integration: +1. Postural control +2. Bilateral motor integration +3. Reflex integration +The above subdomains were identified for +inclusion “because of their clinical significance +in the development of sensory integrative func- +tions in the preschool child” (DeGangi and Berk +1983, p. 1). Table 1 outlines the components of +each subdomain. This tool was designed to be implemented by +occupational or physical therapy practitioners +given their training and educational background +in the interpretation of sensory integrative infor- +mation and test results. Therefore, it is suggested +that a practitioner outside of these fields (i.e., +special educators or motor development special- +ists) seek the assistance of an occupational or +physical therapist for the interpretation of the test +scores. With a baseline understanding of sensory pro- +cessing, implementers should allow 2 h to learn +the items prior to implementation. The assessment +manual is easy to follow, and the specific instruc- +tions for item implementation are outlined with +pictures to assist. A score of 0 through 1, 2, 3, or +4 is received depending on the child’s response to +each item and the quality of the performance +indicating that the skill has been developed. The +higher the score indicates a more integrated, orga- +nized, or normal response. Lower scores qualify +the child’s responses, for example, unable to hold, +loses grasp, does not cross [midline], no resis- +tance, slight to moderate flexion of the elbow, etc. +The score tallies in each subdomain then result +in a “normal,” “at risk,” or “deficient” score pro- +file for a total test score, postural control score, +bilateral motor integration score, and a reflex inte- +gration score (which is only counted toward the +total test score). Score ranges for the varying age +ranges are provided on the score sheet which +makes scoring very clear. This criterion- +referenced assessment tool offers clinicians work- +ing with this population of children a structured +and organized method to assess sensory integra- +tive functions in children with delays in sensory, +motor, and perceptual skills, or children suspected +of having learning problems. + +Historical Background +Georgia DeGangi, PhD, OTR (occupational ther- +apist who now practices in clinical psychology) +and Ronald Berk, PhD (professor of educational +research at Johns Hopkins University at the time +and authored the 1980 book titled: Criterion +Referenced Measurements: State of the Art) devel- +oped this objective tool to observe and measure +the sensory integrative processes in preschool +children, specifically the vestibularly based func- +tions of postural control, bilateral integration, and +reflex integration. It was thought that difficulties +in sensory integrative processing in preschool +children could result in fine or gross motor delays, +poor balance, poor hand use, distractibility, and/or +visual-spatial organization later in the school +years. Rather than wait for these secondary issues +to arise, it was thought that intervention could +addressed/remediated the sensory concerns before +secondary issues arose. This thought, based on +sensory integration theory (Ayres 1964, 1972, +1979), continues today. + +Psychometric Data +DeGangi began developing test items in 1978, +completed psychometric studies, revised the test +and the items, completed several rounds of reli- +ability and validity testing, and ultimately identi- +fied 73 items. After additional item analysis, +which discarded items that did not well discrimi- +nate typical from delayed children or were not +sufficiently sensitive to typical developmental in +these age ranges, only 36 items remained. +The test manual specifically outlines each step +of the sampling and statistical procedures. How- +ever, it should be noted that there were some +sampling difficulties resulting in a disproportion- +ate number of 3–4-year-old children and a low +sample population (n). The authors therefore sug- +gest that further research with a more representa- +tive sample would improve the utility of the tool +and the generalizability of the findings. +Table 2 outlines the components of the assess- +ment process including the psychometric proce- +dures associated with the development of this +criterion-referenced assessment tool. In summary, +the total test score can be used reliably and validly +for screening decisions, and the postural control +score and bilateral motor integration score can be +used reliably and validly for diagnostic decisions +based on the following information: +1. Domain validity: The total test had a high + degree of domain validity + * Consensus among therapists that the items + measure the behaviors they were designed + to measure, and that the collection of items + composing each subtest was representative + of the behaviors defined by the subdomains. + (DeGangi and Berk 1983, p. 40) +2. Construct validity: + * Total test score can be used for screening + decisions with better that 80% accuracy and + a 9% false normal error rate. + * Postural control and bilateral motor integra- + tion subtests were extremely accurate. + * Reflex integration was the least effective + subtest. +3. Interobserver reliability: + * Very reliable for postural control, bilateral + integration, and total sensory integration + behaviors. + * Considerable subjectivity for reflex integra- + tion behaviors. +4. There were high levels of classification consis- + tency in the identification of the classification + designated for each item. +5. Test-retest reliability: + * The results provided substantial evidence of + the stability of sensory integrative functions + for a 1-week re-test interval using a homo- + geneous preschool sample. (DeGangi and + Berk 1983, p. 41). + +Testing procedures +Obtaining information: Thirty-six items should be administered individually and in one sitting; items should be administered exactly as described in the order presented in the manual. +Time to administer: 30 min +Time to score: 10 min +Materials included in the test kit? X yes no +Additional materials needed: 10 15 ft. space, table and chair, masking tape, pencil without eraser, switch-back stopwatch, 3-ft-long wooden dowel, rolling pin, carpeted scooter board, plastic hula hoop, and floor mat +Is the tool easy to learn and administer? X yes no +How much training or practice is required? 2 h +Who can administer the test? Designed for implementation by occupational therapists and physical therapists; can be implemented by special educators or motor development specialists but seeking an occupational or physical therapist to interpret whether the score is recommended as they have training and education in sensory processing. +Is the manual easy to follow/understand? X yes no +Are the forms easy to follow/understand? X yes no +The forms are very clear, easy to follow while administering, and can be quickly scored in a very objective manner. +Domains: Postural control, bilateral integration, and reflex integration + +Clinical Uses +Any assessment tool should be used in combina- +tion with other tools in order to gain the most +comprehensive picture of a child’s functioning. +The DeGangi-Berk TSI was intended to provide +information related to the three subdomains noted +above as these categories of sensory integrative +functioning were thought to have a strong impact +on the development of sensory integrative func- +tions in the preschool child. The intent was to +administer this assessment to children with delays +in sensory, motor, and perceptual skills, or to +children suspected of having learning problems. +This tool continues to be utilized today in +clinical practice as it is a structured and organized +method to investigate the sensory processing abil- +ities in this age group. + +See Also +* Ayres, A. Jean +* Evaluation of Sensory Processing +* Occupational Therapy (OT) +* Sensory Diet +* Sensory Integration (SI) Therapy +* Sensory Integration and Praxis Test +* Sensory Processing +* Sensory Processing Assessment +* Sensory Processing Measure +* Sensory Processing Measure: Preschool + (SPM-P) +* Test of Sensory Functioning in Infants + +Deictic Terms +Sarita Austin +Unlocking Language, London, UK + +Synonyms +Deixis + +Definition +Deictic terms are words whose meaning shifts +depending on the point of view of the speaker. +Examples of deictic terms include “this/that,” +“here/there,” “I/you,” and “my/your.” While +some personal pronoun contrasts (“I/you,” “my/ +your”) are expected to develop before 3 years of +age, many typically developing children continue +to have difficulty with spatial contrast deictic +terms (“this/that,” “here/there”) into the early +school age years. This difficulty is thought to be +related to the shifting quality of the referents for +these terms. That is, “I” does not refer to any +particular person but to the person who happens +to be talking at a given time. When that person +stops talking, the referent for “I” shifts to the next +speaker. “Here” refers not to a specific location +but rather to a place near the speaker. What is +“here” for the speaker may be “there” for the +listener. This shifting reference is thought to +cause special difficulty for speakers with ASD, +possibly due to their difficulties with perspective +taking, communicative engagement, flexibility, +and change. It is important to note that young +children with typical development can also have +difficulty with deictic terms. + +See Also +* Pronoun Errors +* Pronoun Reversal +* Pronoun Use + +Delaware Autism Program +Vincent Winterling +Delaware Autism Program, Newark, DE, USA +Retired (former Statewide Director of Autism). + +Major Areas or Mission Statement +The Delaware Autism Program (DAP) is one of +the largest public school programs in the United +States specializing in educating children and ado- +lescents with an Autism Spectrum Disorder +(ASD). In 2019, it served in excess of 1500 stu- +dents between 2 and 21 years of age, in the full +range of settings (residential programs, separate +schools and settings, and integrated school and +community sites) in six affiliated school districts. +DAP sites employ more than 500 staff, including +teachers, assistants, specialists (psychologists, +behavior analysts, speech language pathologists, +occupational therapists, nurses, etc.), and admin- +istrative and support staff. + +Landmark Contributions +Elements of DAP have been described in various +book chapters (Battaglini and Bondy 2006; +Bondy 1996; Bondy and Frost 1994, 1995; +Doehring and Winterling 2011). The Picture +Exchange Communication System (PECS) (Frost +and Bondy 2000) was first developed by Andy +Bondy and Lori Frost during their tenure at DAP, +together with the involvement of other DAP staff. +Statewide directors have included Dr. Andy +Bondy (1981–1997), Dr. Peter Doehring +(1999–2008), Dr. Vincent Winterling (2009– +2019), Dr. Mary Whitfield (2019–present). + +Major Activities +DAP is public school program that presently con- +sists of affiliated programs in 6 of the 19 school +districts (Local Education Agencies, or LEA) +across the 3 counties in the State of Delaware, +plus other specialized services and supports +(e.g., full year programming, respite, and tempo- +rary residential), provided through the Office of +the Statewide Director of Autism. As a public +school program, DAP’s services are fully funded +by the LEA and the State Education Agency +(SEA), at no cost to parents. The six affiliated +programs share many key elements, including: +(a) programs for children 2 up until 21 years of +age, across the autism spectrum; (b) settings rang- +ing from full inclusion to separate classroom for +children with ASD, including extended school +year services; (c) reliance on teaching methods +based on principles of Applied Behavior Analysis +(ABA), including PECS; (d) a high staff to student +ratio to support more individualized teaching and +community integration; (e) opportunities for par- +ents to create local Parent Advisory Committees +(PAC) to provide input to the LEA, SEA, and +Office of the Statewide Director of Autism; +(f) expectations that staff complete a core training +program, which for teachers includes a 15-credit +graduate teaching certificate in autism and (g) +oversight of the program provided by external +experts in collaboration with program administra- +tion. Many of the programs also coordinate with +other organizations (i.e., daycares, vocational set- +tings, institutes of higher education) to provide +community-based services. Three of the six pro- +grams operate larger county centers which pro- +vide education services to students with more +challenging educational and behavioral needs. +Through an agreement with the SEA, the Office +of the Statewide Director of Autism provides ser- +vices across the state, including: (a) management +of extended educational services (temporary resi- +dential programming in community-based set- +tings) and extended support services (in-home +respite provided to parents for a nominal +co-pay); (b) leadership of various statewide com- +mittees that provide consultation to LEAs regard- +ing educational programming, to coordinate +parent input from the PACs and provide indepen- +dent peer review of the assessment and interven- +tion for students with very challenging behaviors; +(c) coordination of staff training specific to ASD, +and; (d) consultation to all school districts in the +state on challenging students. DAP was +established in 1976 after parents helped to pass +laws defining many of the core elements of the +program (specialized positions like the Statewide +Director, specialized services like extended edu- +cational and support services, additional staffing, +extended school year, statewide committees, etc.). + +See Also +* Applied Behavior Analysis (ABA) +* Educational Interventions +* Free Appropriate Public Education +* Individual Education Plan +* Local Educational Authority +* Picture Exchange Communication System +* Regional Centers +* Statewide Service Programs + +Delay, Deviance Versus +Elizabeth Spencer +College of Education and Human Ecology, The +Ohio State University, Columbus, OH, USA + +Definition +Delay versus deviance refers to a debate about the +nature of development in autism and other disor- +ders. In general, a child who exhibits a develop- +mental delay follows a progression of +development found in the general population, +but progress in development at a slower rate. In +contrast, a child who exhibits deviance follows a +progression of development that is different both +in rate and sequence of progression. There is +evidence to suggest that children with autism +may follow a developmental progression that +includes elements of both delay and deviance. In +many children with autism, language develop- +ment is often delayed but occurs in a progression +similar to children with typical development. In +other children, language development may also +include deviant characteristics (e.g., echolalia). +Many children with autism demonstrate deviance +in the development of social and pragmatic skills. +For example, some children with autism demon- +strate deviance in the development of social +behaviors such as joint attention. + +See Also +* Speech Delay + +Demographics and the Age of +Autism Diagnosis +Judah Koller +Seymour Fox School of Education, Clinical Child +Psychology, The Hebrew University of +Jerusalem, Jerusalem, Israel + +Definition +The role of social and demographic factors on the +age at which children are diagnosed with ASD. + +Historical Background +A growing body of literature has shed light on the +nature of the rapidly rising prevalence of ASD. +Several variables have been suggested in +attempts to explain this trend, with the primary +question focusing on whether there is an actual +rise in incidence or if an increase in awareness +has led to higher rates of diagnosis. Variables +such as parental age and environmental pollut- +ants have been suggested as influencers of diag- +nostic trends (Durkin et al. 2008; Raz et al. +2015a). From the social perspective, contribut- +ing factors appear to include increased awareness +of ASD, changes in the tools used in screening +and diagnosis, lower levels of stigma in societies, +and shifts in the diagnostic criteria (Leonard et al. +2010). Taken together, the general consensus +appears to be that, while the former factors may +play a modest role, the rise in incidence is not a +true increase in the rates of ASD but rather a +social shift expressed in higher numbers of indi- +viduals being accurately identified and diag- +nosed (Isaksen et al. 2013). +Given the above, it follows that these social +factors affecting the rates of diagnosis of ASD +play out in variable fashion across social and +demographic contexts. In the ongoing work by +the Centers for Disease Control and Prevention’s +(CDC) Early Autism and Developmental Disabil- +ities Monitoring (ADDM) Network, national +prevalence estimates are based on the average +across the states monitored. Within that data exists +tremendous variability, strengthening the claim +that social factors are central in determining rates +of diagnosis (Christensen et al. 2019). In a recent +publication evaluating data from 2014, the state +with the lowest prevalence was Missouri, at +approximately 1 in 104 children. The highest +prevalence was found in New Jersey, at 1 in 35. +Given the lack of any environmental or biological +explanations for this stark discrepancy, it is most +logically by the fact that New Jersey has more +capacity in the form of trained experts with the +ability to diagnose young children as well as an +early childhood education system capable of +screening for and identify the children. Notably, even with increased awareness, more +accurate diagnostic measures, and reduced +stigma, families and children that are not seen by +trained professionals with specific expertise in the +diagnosis of ASD will not be identified. + +Current Knowledge +Concurrent to the aforementioned increase in rates +of diagnosis of ASD, the professional community’s +ability to identify and diagnose ASD in early child- +hood has improved dramatically. Much research +now shows that an evidence-based diagnosis of +ASD can be provided to most young children +with a high degree of confidence between the +ages 18 and 24 months and that such diagnoses +are typically stable, meaning they remain accurate +when the same child is reevaluated at older ages +(Guthrie et al. 2013; Ozonoff et al. 2015). Despite +these significant advances in our understanding of +the early presentation of ASD and our ability to +make accurate early diagnoses, the median age at +which a child in the United States receives a diag- +nosis of ASD is 52 months (Baio et al. 2018). +A number of factors appear to contribute to this +significant and costly delay in the age at which +children are diagnosed. Children with less pro- +nounced autism symptomatology are often diag- +nosed later compared to children with higher +levels of symptom severity, as are children with +average verbal abilities, in contrast to those who +are minimally verbal (Salomone et al. 2016). The +same is true for children from families with low +socioeconomic status (SES) and those whose par- +ents do not express concern regarding the presen- +tation of primary symptoms. On a systemic level, +children who do not have access to education and +health services are often diagnosed later than +peers who have such access (Daniels and Mandell +2014; Mazurek et al. 2014; Shattuck et al. 2009). +Children with comorbid health problems or +behavioral difficulties are also likely to receive a +diagnosis later, since parents or professionals could +potentially attribute symptoms of ASD to these +co-occurring conditions (Mandell et al. 2005). Such +a situation often leads to an incorrect primary diag- +nosis of another disorder or a missed diagnosis alto- +gether due to diagnostic overshadowing (Fombonne +2005; Goldstein and Schwebach 2004). For similar +reasons, children with autism who have experienced +adverse childhood experiences, defined as stressful +or traumatic experiences, are likely to receive a +diagnosis of ASD later than peers who do not have +these experiences (Berg et al. 2018). + +Specifically related to SES, studies have consis- +tently found a link between high SES, represented +by income, parents’ profession, and/or years of +parental education, and increased rates of ASD +(Durkin et al. 2017; Ng et al. 2017). The primary +explanation proposed is that with higher parental +education and financial means comes increased +access to services, including ASD diagnostic ser- +vices (Durkin et al. 2010, 2017; Thomas et al. +2012). Work in the United States has found chil- +dren with ASD from families that speak English as +a second language receiving school-based services +later than children who come from English- +speaking families. When they do eventually +receive the services, they receive fewer hours +each week than their peers (Nguyen et al. 2016). +In contrast, some studies from outside the United +States found no particular association between SES +and age of diagnosis, and some even found an +inverse relationship between family income or +parental education and ASD incidence (Khaiman +et al. 2015; Larsson et al. 2005). Interestingly, in +countries with universal healthcare, such as +Canada, Norway, Sweden, and France, where dis- +parities in access to health services between socio- +economic classes are low, higher ASD prevalence +was found in lower SES groups, or no link was +found between SES and prevalence of ASD +(Burstyn et al. 2010; Delobel-Ayoub et al. 2015; +Rai et al. 2012). An extensive review conducted by Daniels and +Mandell (2014) examined the association +between SES, ethnic or race affiliation, and age +of diagnosis. Of the 11 studies that inspected the +relationship between SES and age of diagnosis, +5 found an association between high SES and +earlier diagnosis, while the remaining studies +found no such association. Twelve studies exam- +ined the association between ethnic or racial affil- +iation and the age of diagnosis and revealed +contradictory findings. Five of the 12 found that +children belonging to ethnic or racial minorities +were likely to receive a later diagnosis compared +to children of nonminority children, while 5 other +studies did not find a correlation between these +factors. The remaining two studies found mixed +results, showing that children of the main ethnic +group were likely to receive a later diagnosis +compared to children of ethnic or race minorities. +The researchers posit that these dyssynchronous +findings can be attributed to variables that differ +between the reviewed studies, such as study dura- +tion, sampling method, and the geographic loca- +tion of the study. The variable findings in this +body of literature demand a more nuanced assess- +ment of each individual study, which must each be +interpreted within its particular respective context. +For instance, a Norwegian study found that eth- +nicity did not influence the age of diagnosis +(Larsen 2015). However, it is imperative to con- +textualize this finding within the political reality +of Norway, where every child has access to health +and developmental care at community healthcare +centers, regardless of any ethnic difference. + +As indicated above, societal shifts in aware- +ness and understanding of ASD are clinically +significant and relevant in societal contexts +where children and families are able to access +proper care. A consistent source of medical or +developmental care is essential in order for +children to be diagnosed in timely fashion +(Emerson et al. 2016). Families with lower +SES are also less likely to have such a consis- +tent source of care, thereby minimizing the +chance that developmental delays of any kind +will be identified and targeted close within the +optimal timeframe. It is noteworthy that the association between +consistent care and age of diagnosis was found to +differ based on race (Emerson et al. 2016), with +African American children’s age of diagnosis not +decreasing in correlation with consistent care. +This could potentially be explained by way of +differences in parent and/or professional behavior. +Professionals seeing young children of low SES +African Americans may be slower to refer the +child for a full diagnostic evaluation. Alterna- +tively, or simultaneously, the parents of these chil- +dren maybe slower to push for such a referral or to +question a “wait-and-see” approach. + +Future Directions +Further research and taking a more nuanced and +subjective perspective on the process of +screening and diagnosis are critical. The +conflicting findings that exist in this body of +literature point to fact that we do not have a +clear understanding of these issues. While some +studies find strong associations between vari- +ables such as SES and age of diagnosis, others +do not. Without considering the context for these +studies, we are unable to decipher the meaning of +the body of work as a whole. +For instance, while studies have examined +differences between ethnic and racial groups +within the United States, few have done so inter- +nationally. A recent study from Israel (Koller +et al. 2019) found that the Arab children diag- +nosed in Jerusalem prior to the age of 6 were +nearly all minimally verbal and displayed severe +autism symptomatology. While small, this study +highlights the fact that while large-scale, +population-based studies are necessary to under- +stand broader trends, more nuanced examina- +tions of specific populations and regions are +necessary in order to gain actionable data that +can lead to the support of specific sectors. +Significantly, the work done in this area has +clear and direct relevance for public policy and +community mental health. Efforts to raise aware- +ness of ASD and improve capacity for identifica- +tion of ASD by community professionals can +assist in the early diagnosis of children. The het- +erogeneity of results seen across studies indicates +that region-specific differences in screening, eval- +uation, and diagnostic practice affect the age of +diagnosis. The findings of studies conducted in +specific geographical regions or municipalities +should be conveyed to policymakers and stake- +holders in order to utilize the findings as stepping- +stones to improved systems of public awareness, +screening, and diagnosis. Continued improve- +ments in these both research and research-driven +practice may assist the provision of earlier ASD +diagnoses and support, which could lead to +improved developmental outcomes. + +See Also +* Epidemiology +* Prevalence + +Dendrite +Claudia Califano +Yale-New Haven Hospital, New Haven, CT, USA + +Synonyms +DNA + +Definition +A dendrite is one of the four main parts of neurons, +which also include the cell body, the axon, and the +axon terminals. The dendrite is the part of the neuron +that receives incoming signals from other neurons. +The signals come in the form of neurotransmitters +that cross the area of the synapse between one +neuron and another neuron’s dendrites. Neurotrans- +mitters bind to receptors on the dendrites, and then +the signal passes though the neuron to the cell body. +Dendrites may have extensive branching, and each +neuron often has multiple dendrites. +The number of dendrites and thus the number +of synapses vary with the functions of a neuron. +The dendrites of one neuron may receive signals +from thousands of other neurons. That one neuron +then integrates many signals received and +responds accordingly. +The instructions for the development and func- +tioning of a living organism are contained in a +molecule called deoxyribonucleic acid (DNA) +which is a nucleic acid. The instructions are +spelled out in a sequence or code of four chemical +units called nucleobases (or bases for short). +These are adenine, cytosine, guanine, and thy- +mine, abbreviated as A, C, G and T, respectively. +DNA is contained within nearly every cell of the +human organism. Certain segments of the DNA +molecule called genes contain the code for creat- +ing the components of cells, most importantly, +molecules called proteins (Alberts et al. 2002). +James Watson and Francis Crick described the +molecular structure of DNA in 1953 (Watson +and Crick 1953). DNA is passed from one generation to the next. +In humans, the DNA molecule is divided up into a +set of smaller pieces corresponding to chromo- +somes. Humans inherit 23 chromosomes from +each parent, 22 of them are referred to as auto- +somes and are numbered 1–22 and one is called a +sex chromosome and is either a chromosome X or +a chromosome Y. Thus, normal human cells con- +tain 44 autosomes and 2 sex chromosomes. The +chromosomes are paired in each cell. For exam- +ple, each cell will contain two copies of chromo- +some 1, one from the mother (the maternal +chromosome) and one from the father (the pater- +nal chromosome). Each of a pair of autosomes +will generally contain the same genes. However, +the sequence of DNA at each of the genes will +often vary slightly between individuals, and it is +also now clear that the structure of the chromo- +some, so-called copy number variations (CNVs), +is also part of the normal complement of human +genetic variation. +A change in the sequence or structure of DNA +which results in a deviation from the agreed upon +reference genome may be referred to in various +ways, including an allele, a variant, a variation, a +polymorphism, or a mutation. Typically, the word +polymorphism is used when one is referring to a +change that is present in a percentage of the pop- +ulation and mutation is taken to mean that the +variation is rare and relates to a disease or +phenotype. + +See Also +* Chromosomal Abnormalities +* Copy Number Variation +* Dizygotic (DZ) Twins +* Karyotype +* Monozygotic (MZ) Twins + +Dendritic Cells and Their Expression +of Costimulatory Molecules in +Children with Autism +Spectrum Disorders +Khaled Saad1, Mohamd A. Alblihed2, +Abdulrahman A. Al-Atram3, +Ahmed A. Abdel-Rahman4, Asmaa M. Zahran5 +and Amira Elhoufey6,7 +1Faculty of Medicine, Assiut University, Assiut, +Egypt +2Department of Medical Biochemistry, School of +Medicine, Taif University, +Taif, Kingdom of Saudi Arabia +3Department of Psychiatry, College of Medicine, +Majmaah University, +Majmaah, Kingdom of Saudi Arabia +4Department of Neuropsychiatry, Faculty of +Medicine, Assiut University, +Assiut, Egypt +5Clinical Pathology Department, South Egypt +Cancer Institute, Assiut University, Assiut, Egypt +6Department of Community Health Nursing, +Faculty of Nursing, Assiut University, +Assiut, Egypt +7Department of Community Health Nursing, +Sabia University College, Jazan University, +Jazan, Kingdom of Saudi Arabia + +Background +Autism spectrum disorder (ASD) encompasses +early-onset neurodevelopmental mishaps +afflicting about 1 in every 160 children world- +wide. It develops through a complex set of etiol- +ogies that involve immunological, environmental, +and genetic factors (Jia et al. 2018a, Bjørklund +et al. 2019). Individuals diagnosed with ASD may +display a range of problem behaviors such as +hyperactivity, poor attention, impulsivity, aggres- +sion, self-injury, and tantrums. The lack of suc- +cessful therapy, genetic heterogeneity, and +the increasing incidence make it one of the most +challenging disorders. At present, only some +comorbid problems of ASD could be treated, but +not the core manifestations (El-Rashidy et al. +2017; Cheng et al. 2017; Shaaban et al. 2018). +The etiopathogenesis of ASD is complicated and +debatable. Immunological abnormalities have +been recently linked with the pathology of ASD. +The chemosensory immune system has a vital role +in the process of neurodevelopment by regulation +of the neuronal proliferation, plasticity, and +synapse development. Besides, it removed the +apoptotic neurons and contributed to numerous +neurological activities (Wang et al. 2014; +Bjorklund et al. 2016). Numerous revisions over +the last 20 years have recognized immune disor- +ders, including both decreased immune functions +and higher autoimmunity among children diag- +nosed with ASD (see for details Bjorklund et al. +2016). Immune system abnormalities may have a +role in autism development; however, there is no +consensus regarding whether these disorders ini- +tiate the onset of core manifestations or regulate +the symptomatology and pathogenesis of autism +(Wang et al. 2014). Individuals with ASD +are more susceptible to various types of infec- +tions, asthma, allergies, and seizures. Also, autis- +tic patients usually have peculiar reactions to +vaccines and autoimmune diseases (Hsiao 2013; +Wang et al. 2014; Bjorklund et al. 2016). + +Dendritic Cells +Dendritic cells (DCs) currently are known as a +distinct hematopoietic lineage of myeloid cells, +together with monocytes, granulocytes, and mac- +rophages. They originate from the bone marrow +(BM) through specific ancestor subclasses and +actively contributed to both adaptive and innate +immunity and managing the equilibrium between +tolerance and immunity. DCs are powerful phago- +cytic cells and considered one of the most effec- +tive specialized antigen-presenting cells (APCs) +that are required for initiation and spreading the +immune responses (Rhodes et al. 2019). DCs are +responsible for uptaking, processing antigens, and +then presenting them to T-lymphocytes (Patente +et al. 2019). DCs recognize antigens via Toll-like +receptors, which are specific for certain molecules +present in bacteria, fungi, viruses, and parasites +(Patente et al. 2019). In the peripheral blood, DCs +are immature that upon stimulation give rise to +two active forms. Based on the functional and +phenotypic features, DCs are classified into two +lineages. The first type is myeloid dendritic cells +(mDCs) CD11c+CD123 , also called conven- +tional DCs, which present mainly in the peripheral +blood and lymphoid tissues. mDCs represent the +antigen-presenting dendritic cells that summit the +adaptive immunity (Patente et al. 2019; Rhodes +et al. 2019). mDCs are highly specialized cells +similar to monocytes and are secondly divided +into mDC-1 cells which are the main stimulator +of CD8+ cells, which is very important in antiviral +and antitumor activity (Brewitz et al. 2017), and +the less common mDC-2 cells which have several +immunoregulatory functions. They are potent +inducers for Th1, Th2, and Th17 immune +responses. Also, mDC-2 activate T-regulatory +cells in the gastrointestinal tract. In addition, +mDC2 stimulate CD4+-naïve T-lymphocytes to +express gut-homing molecules (Segura et al. +2012; Leal Rojas et al. 2017). +The second type is plasmacytoid dendritic +cells (pDCs) CD11c CD123+, which are found +in small numbers in the peripheral blood. pDCs +have a potential role as APCs, as they express +co-stimulatory molecules and MHC II. Also, +they have an antiviral role through the production +of interferon I and III and priming CD8+ +T-lymphocytes and natural killer cells (Schlitzer +et al. 2018; Rhodes et al. 2019). + +Costimulatory Molecules B7 (CD80/ +CD86) +CD80 and CD86 are a group of cell surface gly- +coproteins of the B7 family, structurally related to +immunoglobulins. These molecules play an +important role in the regulation of innate and +adaptive immune system (Rhodes et al. 2019). +Previous studies have reported that B7-1 (CD80) +and B7-2 (CD86) are the most characterized +costimulatory molecules for activation of +T-lymphocytes (Fujii et al. 2004; Schlitzer et al. +2018). CD80 is expressed in low levels on the +surface of DCs, APCs and monocytes; however, +CD86 is highly expressed in these cells. CD80 +and CD86 can either stimulate T-lymphocytes +through binding to CD28 receptor or deactivate +T-cells through binding to CTLA-4 (cytotoxic T- +lymphocyte-associated antigen) receptor. CD80 +and CD86 are exclusively essential in DCs’ acti- +vation. When the MHC class II peptide on DCs +interacts with T-helper cells, CD80 and CD86 are +upregulated, allowing the activation of DCs +and contact them to CD8+. This supports +T-lymphocyte differentiation into cytotoxic +T-cell (Fujii et al. 2004; Zheng et al. 2004). +As stated before, these costimulatory +molecules have a pivotal role in DCs activation. +This activation occurs through CD28 interactions +with increase the mobility of DCs for migration +and release of cytokines specifically IL-6, with +activation of cellular proliferation, and inhibit +apoptosis (Zheng et al. 2004; Schlitzer et al. +2018). On the other hand, these molecules have +inhibitory effects on DCs through interaction +with CTLA-4. This suppressive effect helps reg- +ulatory T-lymphocytes to avert any immunologi- +cal response to self-antigens (Fujii et al. 2004; +Zheng et al. 2004). + +Dendritic Cells and Costimulatory +Molecules in Autism Spectrum Disorders +In our previous work (Saad et al. 2017), we +assessed the levels of DCs and CD86 and CD80 +costimulatory molecules in children with ASD +and compared to normal children: + +Myeloid Dendritic Cells (mDCs) +Our study showed significantly augmented +levels of mDCs in children with ASD when com- +pared to typically healthy children (2.44 0.20 +vs. 1.54 0.09; p = 0.006). Furthermore, we +noticed positive correlations between the +frequency of mDCs and autism severity +(p < 0.01), stereotypy (p < 0.05), social under- +standing (p < 0.001), emotional response +(p < 0.01), and hyperactivity (p < 0.05), as mea- +sured on CARS and ABC scales (Saad et al. +2017). In line with our findings, Breece et al. +(2013) reported significantly increased mDCs +frequencies in autistic children as compared to +normal controls (4.6% 0.41 vs. 3.70% 0.38; +p = 0.03). They found the percentages of mDCs +were higher by 25% to 40% in autistic patients +when compared to normal children. Besides, they +found significant positive correlations between +the frequency of mDCs and stereotypic behavior +(p = 0.02; effect size = 0.43) and the severity +of GIT symptoms especially constipation +(p = 0.002; effect size 1.85) (Breece et al. 2013). +In addition, they reported significant positive +associations between mDCs and the volume of +the left amygdala (p = 0.004), and right amygdala +(p = 0.02), in autistic children after adjustment of +sex and age of the patients’ group. + +Plasmacytoid Dendritic Cells (pDCs) +In our study, pDCs’ frequencies were higher in +autistic patients when compared to controls +(1.98% 0.35 vs. 1.18% 0.05; p = 0.036). +Furthermore, we found a positive association +between mDCs and autism severity (p = 0.05). +However, we could not find any correlations with +autism core manifestations and pDCs (Saad et al. +2017). Contrary to our results, Breece et al. (2013) +reported comparable frequencies of pDCs in ASD +patients and typically developing controls. They +reported significant correlations between pDCs +percentages and the right amygdala (p = 0.03) +and left amygdala volumes (p = 0.02) (Breece +et al. 2013). + +Costimulatory Molecules CD80 and CD86 +Our data showed a significant upregulation in +the expression of CD80 (49.67 4.67 +vs. 23.16 1.39; p = 0.001) and CD86 +(55.37 2.94 vs. 39.42 4.7; p = 0.001) +costimulatory molecules on the entire DCs in +autistic children when compared to control +group. In addition, the mean fluorescent intensity +of CD86+ (149.36 9.52 vs. 111.26 8.26; +p = 0.003) and CD80+ (76.07 3.18 +vs. 52.05 3.59; p = 0.001) were significantly +higher in ASD group than controls (Saad +et al. 2017). +For the first time, our results showed an inverse +association between the frequencies of both types +of DCs and vitamin D levels in autistic children. +Recently, many pieces of research and reviews +focused on the role of vitamin D in CNS and +immunological disorders (Saad et al. 2016; +Bjørklund et al. 2016, 2019; Jia et al. 2018a). In +addition to the well-known metabolic functions of +vitamin D in bone and mineral metabolism, plenti- +ful studies reported that vitamin D has several +functions in the process of brain development by +affecting the axonal connectivity and neuronal dif- +ferentiation. In ASD, previous studies have shown +significant associations between vitamin +D deficiency and increased risk of autism (for +details see Jia et al. 2018b). Additionally, vitamin +D deficiency during pregnancy was associated with +numerous adverse effects on the fetus, e.g., intra- +uterine growth retardation (Bjorklund et al. 2016; +Jia et al. 2018b). Vitamin D is a key modulator of +the immune system, playing an important physio- +logical role in the regulation of both adaptive and +innate immunity. Vitamin D is shared in the process +of DC maturation and affected their functions +through multiple mechanisms. In DCs, vitamin +D can make a resistant phenotype with low HLA- +DR, CD80, and CD86 expressions with a high ratio +of interleukin10/interleukin12p70 (Ferreira et al. +2015). Furthermore, the differentiation of DCs in +the presence of active form of vitamin D (1,25D3- +DCs) leads to failure of DCs to stimulate auto- +reactive T-lymphocytes, activating in its place +antigen-specific T-regulatory cells resulting +in induction of infectious tolerance and pre- +servation of DC tolerogenic response (Ferreira +et al. 2014, 2015). + +Conclusion +Taken together, the previous data suggest many +systemic immune abnormalities in patients with +ASD. Significant variations in the frequencies and +functions of the myeloid lineage cells, specifically +DCs, macrophages, and monocytes, have been +extensively investigated in many types of research +in children with ASD (see Bjorklund et al. 2016 +for details). We suggested that DCs may play a +role in the pathogenesis of ASD. However, the +exact mechanism of the correlations of DCs and +their costimulatory molecules in ASD remains to +be elucidated. + +Dental Care +Ben Popple1 and Fred R. Volkmar2 +1White Oak Pediatric Dentistry, Newnan, GA, +USA +2Child Study Center, Irving B. Harris Professor of +Child Psychiatry, Pediatrics and Psychology, Yale +Child Study Center, School of Medicine, Yale +University, New Haven, CT, USA + +Definition +Dental care is just as important (if not more impor- +tant) for children with autism. Unfortunately, var- +ious factors make attaining adequate dental care +challenging for children with autism. While par- +ents are understandably reluctant to stress their +child – particularly a child with oral sensitivities – +lack of dental care early in life can lead to major +long-term health problems (Volkmar and Wiesner +2009). + +Historical Background +As noted elsewhere in this volume, a considerable +body of work on the nature of autism and related +conditions (Autism Spectrum Disorders, ASDs) +exists. These conditions are characterized by +major problems in social interaction, communica- +tion, and behavior. These individuals range from +intellectually deficient to above average +IQ. Unfortunately, deficits described above can +make providing quality dental health care difficult +and unpredictable (Stein et al. 2014). In addition +to difficulties completing dental treatment, parents +also have difficulty accessing care (Kogan et al. +2008) or may avoid care because of stress related +to appointment experience (Weil and Inglehart +2012). For these reasons, managing their oral +health can be very challenging for health care +providers. + +Current Knowledge +As with regular medical care, establishing a “den- +tal home” is a major step forward in providing +comprehensive ongoing dental care for children +with autism (Nowak and Casamassimo 2002). +Unfortunately, finding a dental home can be diffi- +cult because very few general dentists are com- +fortable treating these individuals because of +behavior challenges. Some sources report fewer +than one in ten general dentists will treat individ- +uals with special health care needs (Casamassimo +et al. 2004). As a result, individuals with autism +are often forced to visit multiple offices before +finding a dentist who is willing to treat them. +Frustration associated with this process can be +avoided when patients specifically seek out a +pediatric dentist to treat their child’s dental +needs. Pediatric dentists complete a 2-year resi- +dency program in addition to dental school. In +residency, they learn to provide dental care for +infants and children through adolescence, includ- +ing patients with special health care needs. Many +pediatric dentists will continue to see patients with +special health care needs such as autism well into +adulthood. As patients get older, they may start to +develop some oral health needs that pediatric den- +tists are not comfortable addressing. Pediatric +dentists can be a helpful resource for finding care- +givers who treat more adult needs and are com- +fortable treating patients with autism. +When searching for a pediatric dentist, parents +should be aware that locating a pediatric dentist +currently accepting new patients might be difficult +(Capozza 2012). The availability of pediatric den- +tal practitioners varies widely by state. Addition- +ally, lower reimbursement by state insurance +programs like Medicaid may pose further obsta- +cles for care. The American Academy of Pediatric +Dentistry has developed a provider search engine +to help parents find pediatric dentists in their area +(http://www.aapd.org/finddentist/). + +Oral Health Concerns +Individuals with ASD experience many oral health +conditions requiring management by dental profes- +sionals similar to the general population. Like the +general population, the most commonly reported +oral health concern individuals with ASD experi- +ence is dental decay (Stein et al. 2012). In addition +to dental decay, other commonly reported oral +health problems include periodontal disease, dental +trauma related to coordination problems, and dental +trauma related to self-injury (Volkmar and Wiesner +2009). Individuals with ASD also experience +orthodontic problems like anterior open bite, +crowding, and diastema (Delli et al. 2013). +It is important to understand that dental decay +is an enormous problem for all children in the +United States regardless of health status. Dental +decay is the most common chronic childhood +disease today with an estimated 16 million chil- +dren currently affected. Oral disease is responsible +for children missing 51 million school hours and +parents missing 25 million work hours annually. +Children from low-income families have signifi- +cantly more untreated decay than the rest of the +population. Considering the high rate of decay experienced +by the general population, one may expect indi- +viduals with autism to also experience a high rate +of dental decay. Current studies, however, do not +give clear confirmation that this is the case. +Although it is generally agreed that there is a +higher risk for dental caries in ASF although +data addressing this is rather limited likely related +to differences in samples studied (see Loo et al. +2008). Caries prevention in this population is an +obvious priority. + +Prevention +While the patient, parents, and dentist play the +primary role in prevention of dental disease, all +members of the health care team need to be aware +of dental caries prevention strategies. Establish- +ment of the dental home is the first step in this +process preventing dental decay (Nowak and +Casamassimo 2002). Ideally, the dental home +should be established within 6 months of the +eruption of the first tooth or no later than 1 year +of age. Similarly, the medical home should also be +established at this time. One goal of the dental +home is to break the current cycle of problem- +initiated care seeking. The dental home works to +help establish good oral health practices through +patient and parent education. The dental home +also identifies dental disease early in the disease +process when it can be most easily managed. The +dental home is also responsible for referral to the +appropriate specialist when the patient’s dental +needs are beyond the scope of practice of the +dental home. Caries risk assessment is a tool that uses caries +risk indicators to identify habits that are likely to +result in the development of dental decay. Identi- +fying these high-risk habits allows preventive +strategies to be customized for each patient, so +dental decay can be avoided and/or the decay +process can be stopped when it is experienced +(AAPD 2013). This is especially helpful for +patients with ASD because of how little we +know about this population’s caries experience +and the many caries risk indicators with which +these patients can present. + +Beyond being broadly classified as high caries +risk because of special needs status, individuals +with autism also have risk factors specifically +related to their disorder. Some risk factors include +poor oral hygiene, detrimental oral behaviors, +medication-induced xerostomia, concurrent med- +ical diagnoses, low cognitive level, poor dietary +habits, gastric reflux, a preference for soft/sweet +foods, use of sweets for behavior modification, +and requiring help with tooth brushing. Some +risk factors occur more commonly than others in +this population, but no child will display exactly +the same risk factors. +The next strategy for preventing dental decay +is increasing the patient and caregiver’s knowl- +edge through education (Klein and Nowak 1998). +Caregivers and patients should have a basic +understanding of how dental decay occurs so +they can be proactive in making good oral hygiene +decisions. Everyone involved in the patient’s care +should be aware of the four factors that must come +together for a cavity to form, i.e., presence of +teeth, the presence of bacteria, the presence of a +nutrition source for the bacteria, and time for the +decay to develop. While the presence of a tooth +and time cannot be modified easily, the other two +factors can be. The first modifiable variable is the +level of cariogenic bacteria in the mouth. The +second factor is the level of fermentable carbohy- +drates present in the oral environment +(Featherstone 2004). Bacteria levels can be reduced through good +oral hygiene (brushing twice per day with fluoride +toothpaste and flossing once per day). Ferment- +able carbohydrates can be reduced through diet +control (avoiding foods that are especially cario- +genic). Caregivers have total control of diet in this +situation and can help prevent decay by drastically +reducing fermentable carbohydrates in the diet. In +the case of a higher cognitively functioning indi- +vidual, the child may have more independence +when it comes to food choices. With this scenario, +effective oral hygiene skills can be taught, there- +fore reducing bacteria level in the oral +environment. +While diet and oral hygiene can both be +targeted to reduce caries risk, improving oral +hygiene may be the best way to reduce caries +risk in the autistic population. Difficulty with +home care can be explained by many of the +same reasons, and treatment in the dental clinic +is also difficult. Tooth brushing can cause prob- +lems with individuals who have oral sensitivity, +poor motor control, poor understanding, and lack +of interest. Fluoride is safe and effective at reduc- +ing tooth decay when used as directed (Volkmar +and Wiesner 2009). In fact, the Center for Disease +Control and Prevention considers water fluorida- +tion to be one of the ten greatest public health +achievements of the twentieth century with more +than 150 million Americans benefiting from fluo- +ridated water. If there is concern that a patient may +swallow toothpaste, extra care should be taken to +make sure the proper amount of toothpaste is used +during each brushing session. Children under the +age of 2 should only have a smear of toothpaste +applied to the toothbrush, while children over the +age of 2 can use a pea-sized drop of toothpaste +each time they brush (Guidelines on Fluoride +Therapy 2014). Visual teaching can also be used to help +improve daily oral hygiene skills. Studies using +a simple photo storybook to outline home care and +in office procedures have helped improve proce- +dural success (Volkmar and Wiesner 2009). +Equally as important, in one study, parents saw +the value in the intervention and continued using +the storybook when the study ended (Backman +and Pilebro 1999). +For the uncooperative child, various strategies +may be employed, e.g., three-sided toothbrush. +The three-sided toothbrush allows the parent to +clean the buccal, lingual/palatal, and occlusal sur- +faces of the tooth all at once, reducing brushing +time and increasing the chance of cleaning all +tooth surfaces. Another helpful tool is the mouth +prop. Mouth props are placed on the opposite side +of the mouth from the side being brushed to pre- +vent the child from biting down. Mouth props can +be as simple as a stack of tongue blades taped +together or the handle end of a toothbrush. +Mouth props can also be purchased online from +special needs dental supply websites. Finally, +floss sticks and interproximal brushes can be +used instead of traditional dental floss. These +products may be easier to use when flossing a +difficult child, because they can be used with +one hand. + +Appointment Preparation and the Dental Visit +Challenges for office visits for the child with ASD +arise given the children often have difficulties with +change, have limited communication skills, can be +highly anxious, and variably related socially. These +children may dislike being touched and may be +alarmed by unusual sounds or bright lights. Accord- +ingly, many behavior guidance techniques com- +monly used by dental professionals may be of +limited use (Marshall et al. 2007). Thus success in +the dental chair is largely dependent on preparation +for the visit. Caregivers, like parents and therapists, +can also do many things to help prepare the patient +for the visit using exercises to familiarize the +patient with what to expect at the appointment by +using visual aids and appointment practice (Pilebro +and Backman 2005; Volkmar and Wiesner 2009). +Parents are often quite good predictors of the child’s +behavior. Simply asking things like whether the +child can sit for a haircut, if the child is toilet trained, +and how successful tooth brushing is at home can +serve as initial predictors of cooperativeness. It is +important to understand parental concerns or ques- +tions, e.g., relative to fluoride, diet, behavior man- +agement strategies, and so forth. Parents may have +questions about mercury or use of nitrous oxide, +radiation, and other materials (Rada 2010). Strate- +gies that can help include predict in use of the dental +chair, and visual strategies have been successfully +used to manage a range of problems and enhance +compliance with health care and make use of the +typical strengths children with autism have in the +area of nonverbal, visual, static, and sequential +information presentation (Hogdon 1995). + +Story- +books can demonstrate what the dental office, +waiting room, and treatment rooms look like. The +storybook can also show pictures of dental instru- +ments and pictures of what the dental providers look +like. These materials are readily prepared on today’s +computers and can be used to facilitate cooperation. +Realistic goals should be set for each appointment. +Staff should notice patterns of success and gradually +build upon these. Understanding and consistency on +the part of care providers is important, e.g., sched- +uling so as to avoid waiting time. +For the dental visit, applied behavior analysis +(ABA) strategies can help interpret and modify +behavior. It is also important for providers to +understand that poor behavior can be +unintentionally negatively reinforced the same +way positive behavior can be reinforced. Children +with autism often demonstrate oral defensiveness, +escape, and avoidance behaviors at their dental +visit attempting to avoid treatment (Delli et al. +2013). Providers must understand they are only +reinforcing this behavior by allowing patients to +avoid treatment, e.g., patient is experiencing a +stimulus, reacting, and is rewarded when the +undesired stimulus is removed. Introducing treat- +ment in steps with desensitization visits can also +help patients have a positive experience. The first +time the patient comes to the office, the visit could +simply consist of sitting in the waiting room. +From there, the patient may walk back to a treat- +ment room. Patients continue to experience more +each visit until the desired procedure is com- +pleted. Although this strategy can be effective, it +is also very time consuming and may be difficult +to implement in the private dental office. How- +ever, desensitization visits can be planned to min- +imize the amount of time spent on visits that are +not truly benefiting the patient. When the first two +visits just require visiting different parts of the +office, appointments are quick and do not require +significant time commitment for the dentist or +office staff. +Given problems in relating and communication, +it is important to realize that the frequent patterns of +becoming overly polite when a person is having +problem may be less helpful that direct instruction, +e.g., instead of saying, “Please come sit in the chair +so we can look at your teeth,” the provider may have +more success saying, “Sit here.” Another way pos- +itive outcomes may be increased is by wearing a +clear face shield instead of the traditional cloth +facemask. Eye-tracking studies show that individ- +uals with autism spend much more time focused on +the mouth. Wearing a clear face shield allows indi- +viduals with autism to continue to gather informa- +tion from the dentist’s lower face throughout the +procedure. Staff should be aware of sensory over- +stimulation, e.g., the movement of the dental chair +may cause anxiety, and this could be avoided by +allowing the patient to stand while the chair reclines. +Use of unscented/unflavored products can be help- +ful. minimize these obstacles. Applying dental prod- +ucts to a few teeth and quickly wiping away the +excess as each tooth is cleaned can minimize sensa- +tion. “Paste-less” prophylactic angles can be +extremely helpful when treating patients who cannot +tolerate the sensation or taste of prophylactic paste in +their mouth. If use of suction is a problem, gauze can +be used to soak up saliva and water. The sound of +the high-speed hand piece can also be distressing. +When patients are having trouble tolerating bright +light, dental mirrors with lights on the handle can be +invaluable treatment tools. + +Completing dental radiographs is a very impor- +tant portion of the dental visit and is an essential +part of the dental exam and diagnosis. Dental +radiographs provide information about the oral +cavity that cannot be discerned any other way. +Radiographs can be the deciding factor in deter- +mining whether or not a patient needs treatment in +the operating room and how much operating room +time will be needed. If radiographs cannot be +completed, the dental provider must schedule +extended operating room time for the patient in +case the patient has extensive interproximal dental +decay that cannot be visualized clinically. Many +of the same strategies previously mentioned can +be used in taking radiographs. It traditional bite- +wing radiographs are impossible to complete, pro- +viders should consider attempting panoramic +bitewings. +Some papers report that the protective stabi- +lizer (papoose) is used in as high as 44% of the +time with children who have ASD. If providers +are considering placing the child in a papoose, it +should be discussed with parents at length before +starting treatment. Every effort should be made to +ensure the parent understands the purpose of the +protective stabilizer and why it is used +(9Eatonk 2005). + +Pharmacological Treatment Aids +If other strategies are not successful, pharmaco- +logical management of behavior should be con- +sidered. There are many sedation protocols +available for in-office treatment ranging from +minimal to deep sedation. Services offered differ +based on the provider’s training, experience, and +patient factors such as previous sedation experi- +ences, health history, and current health status. In +office, sedation is traditionally reserved for +healthy patients with no medical complications. +Outcomes of sedation procedures can be +unpredictable even with the most experienced +providers, and unpredictable and paradoxical +reaction to some sedative agents have been noted +(Volkmar and Wiesner 2009). If all other efforts +fail, one option is generally anesthesia; treatment +must be completed in the operating room under +general anesthesia, and parents are often comfort- +able with this approach (Cuvo 2010). In such +cases, consultation with the primary health care +provider is important. The decision to treat a +patient under general anesthesia should not be an +excuse to abandon intervention strategies that +have been discussed to improve behavior at the +dental visit. Behavior is less likely to improve +over time in children with ASD than the general +population, but improved behavior is possible +with hard work. Dental providers and caregivers +should continue to work towards successful com- +pletion of the dental visit in the office +environment. + +Future Directions +Regardless of caries rate experienced by the autis- +tic population, all children are at risk for develop- +ing dental decay. For that reason, every child +requires routine preventative dental care. When +treating individuals with autism, it is important +to remember that every patient will present with +unique challenges and will respond differently to +various intervention strategies (Delli et al. 2013). +Providers must realize that an intervention strat- +egy may be very effective for one patient and +totally ineffective for another. Given the wide +range in syndrome expression, clearly there is no +single “cook book” to success when treating indi- +viduals with ASD. + +See Also +* Applied Behavior Analysis (ABA) +* Dental Care +* Medical Home and ASD + +Denver Development +Screening Test (DDST) +Robin Hansen +Pediatrics, Center for Excellence in +Developmental Disabilities, UC Davis +M.I.N.D. Institute, Sacramento, CA, USA + +Synonyms +DDST; Denver II + +Description +The Denver Developmental Screening Test, first +published in 1967 (Frankenburg and Dodds +1967), was one of the first screening tools devel- +oped to identify young children at risk for devel- +opmental delay and disability. It’s format was +similar to the construction of pediatric growth +charts, with 105 developmental items for children +from birth to 6 years of age aligned chronologi- +cally along horizontal age lines, divided into four +discrete developmental domains: personal-social, +fine motor-adaptive, language, and gross motor. +Bar graphs for each developmental item reflect the +ages at which 25%, 50%, 75%, and 90% of typi- +cally developing children in the standardization +sample completed the task. Because of criticisms +related to low sensitivity in identifying children +with speech and language delays, it was revised to +add more language items, restandardized, and +remarketed as the Denver II in 1992 +(Frankenburg et al. 1992), retaining a similar for- +mat to the DDST. Both are administered by indi- +viduals who have trained to proficiency using +training tapes/DVD or the administration manual, +with standardized toys such as blocks, rattles, and +pictures included in the toolkit. It is estimated to +take 10–20 min to administer and score. Several +options regarding item administration were devel- +oped and evaluated. The most commonly used +approach in primary care settings included admin- +istering at least three items in each domain whose +bar graphs are closest to but completely to the left +of the age line, indicating items that over 90% of +typically developing children should be able to do +by that age. Any of these items not successfully +completed are considered a delay; items where the +age line passes through the 75–90% section of the +bar graph which the child cannot accomplish are +scored “cautions,” and an algorithm for determin- +ing normal, abnormal (two or more delays), and +questionable (two cautions or one delay) results is +provided in the manual. + +Historical Background +The DDST is most important for its historical +background rather than as a currently +recommended screening tool. It was the first +developmental screening tool for young children +that was widely marketed to the primary care +medical community as well as child care pro- +viders and other child health professionals. It +played a significant role in widespread recogni- +tion of the importance of early identification and +intervention from a public health and primary care +perspective. The role of parents as accurate +observers of their children’s behaviors was also +recognized by the developers of the DDST and +subsequent screening materials such as the Den- +ver Prescreening Developmental Questionnaire +and the Denver II. The DDST and Denver II +became widely used in the United States and +internationally, being translated and +restandardized in many countries. + +Psychometric Data +The DDST was originally standardized on 1,036 +children from Denver, age 1–72 months, with +reported co-positivity scores of .92 and +co-negativity scores of .99, using the Bayley Men- +tal and Psychomotor Scales and Stanford-Binet +Intelligence Scales as criterion tests. Subsequent +studies of concurrent and predictive validity, +reviewed by Meisels (1989), found that while +the specificity remained high (.87–1.0), the sensi- +tivity was unacceptably low (.13–.46), +particularly when children were reevaluated +14 months to 6 years later (.18). The Denver II +was standardized on 2,096 children 0–6.5 years of +age, half from Denver and half from rural Colo- +rado. Inter-rater reliability and test-retest validity +were reported to be .90 or greater (Frankenburg +et al. 1992). Subsequent studies showed that, with +these revisions, the Denver II had acceptable sen- +sitivity of .83 reported by Glascoe et al. (1992), +but specificity dropped to .43, shifting concerns +about the DDST failing to identify children with +significant delays to concerns about overreferral +of typically developing children using the +Denver II. + +Clinical Uses +The Denver II is still marketed by Denver Devel- +opmental Materials Inc. However, it is not +included in the most recent American Academy +of Pediatrics guidelines for general developmental +surveillance and screening as a recommended tool +(2006) nor in the AAP guidelines for ASD screen- +ing (2007), as it has never been evaluated as a +screening tool for ASD. Its format, however, con- +tinues to be useful for pediatric educators as a way +of visually illustrating the importance of assessing +different developmental domains simultaneously +in individual children, of tracking development +over time, and of showing the variability in ages +at which different developmental items “typi- +cally” occur. + +Deoxyribonucleic Acid +Paul El-Fishawy +State Laboratory, Child Study Center, Yale +University, New Haven, CT, USA + +Synonyms +DNA + +Definition +The instructions for the development and func- +tioning of a living organism are contained in a +molecule called deoxyribonucleic acid (DNA) +which is a nucleic acid. The instructions are +spelled out in a sequence or code of four chemical +units called nucleobases (or bases for short). +These are adenine, cytosine, guanine, and thy- +mine, abbreviated as A, C, G and T, respectively. +DNA is contained within nearly every cell of the +human organism. Certain segments of the DNA +molecule called genes contain the code for creat- +ing the components of cells, most importantly, +molecules called proteins (Alberts et al. 2002). +James Watson and Francis Crick described the +molecular structure of DNA in 1953 (Watson +and Crick 1953). +DNA is passed from one generation to the next. +In humans, the DNA molecule is divided up into a +set of smaller pieces corresponding to chromo- +somes. Humans inherit 23 chromosomes from +each parent, 22 of them are referred to as auto- +somes and are numbered 1–22 and one is called a +sex chromosome and is either a chromosome X or +a chromosome Y. Thus, normal human cells con- +tain 44 autosomes and 2 sex chromosomes. The +chromosomes are paired in each cell. For exam- +ple, each cell will contain two copies of chromo- +some 1, one from the mother (the maternal +chromosome) and one from the father (the pater- +nal chromosome). Each of a pair of autosomes +will generally contain the same genes. However, +the sequence of DNA at each of the genes will +often vary slightly between individuals, and it is +also now clear that the structure of the chromo- +some, so-called copy number variations (CNVs), +is also part of the normal complement of human +genetic variation. +A change in the sequence or structure of DNA +which results in a deviation from the agreed upon +reference genome may be referred to in various +ways, including an allele, a variant, a variation, a +polymorphism, or a mutation. Typically, the word +polymorphism is used when one is referring to a +change that is present in a percentage of the pop- +ulation and mutation is taken to mean that the +variation is rare and relates to a disease or +phenotype. + +See Also +* Chromosomal Abnormalities +* Copy Number Variation +* Dizygotic (DZ) Twins +* Karyotype +* Monozygotic (MZ) Twins \ No newline at end of file