Oklahoma Autism Needs Assessment Survey

Transcription

1 Oklahoma Autism Needs Assessment Survey Parents, Caregivers and Individuals Living with Autism Spectrum Disorder June 30, 2016 A report to: The Oklahoma Family and Interagency Autism Council Prepared by: Oklahoma Autism Network Tolbert Center for Developmental Disabilities & Autism College of Allied Health University of Oklahoma Health Sciences Center 1200 North Stonewall Avenue Oklahoma City, Oklahoma Phone: Toll Free: or AUTISM Fax: okautism@ouhsc.edu Web:

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3 Acknowledgments We thank the following individuals for their advice and commitment in developing the survey. Traci Cook, MS, Executive Director NAMI Oklahoma, Inc. Ginger L. Elliott-Teague, PhD, former Senior Researcher Department of Human Services, Office of Planning, Research & Statistics Tracey Falardeau, Coordinator, Oklahoma State Department of Education, Special Education Services Wanda Felty, Community Leadership and Advocacy Coordinator, Oklahoma LEND Core Faculty University of Oklahoma Health Sciences Center, Center for Learning and Leadership, College of Medicine Joann Goin, former Director Department of Human Services, Developmental Disabilities Services Todd Loftin, Executive Director Assessment and Instruction Oklahoma State Department of Education, Special Education Services Kim Osmani, Transition Coordinator Department of Rehabilitation Services Mark Sharp, Executive Director Oklahoma State Department of Education, Special Education Services, SoonerStart Linda Whaley, Program Manager Department of Human Services, Child Care Services Corresponding Authors Address correspondence concerning this report to the principal investigators, Julie D. Smith, MS, OTR/L and Rene Daman, PT, MS, BCBA, LBA Oklahoma Autism Network, College of Allied Health, University of Oklahoma Health Sciences Center, 1200 North Stonewall Avenue, Oklahoma City, OK 73117; and

4 The Oklahoma Family and Interagency Autism Council Rene Daman, PT, MS, BCBA, LBA Chair Director, Oklahoma Autism Network, College of Allied Health, University of Oklahoma Health Sciences Center Department of Education Tracey Falardeau, MA, Coordinator, Special Education Services University of Oklahoma Health Sciences Center (continued) Judy Pluess, Family Services Coordinator, Oklahoma Autism Network, College of Allied Health Jacob Singer, MA, BCBA, Lead Behavior Analyst Julie D. Smith, MS, OTR/L, Co-Director, Oklahoma Autism Network, College of Allied Health Ginger Wells, MSW, Special Projects Coordinator, Oklahoma Autism Network Department of Health, SoonerStart John Corpolongo, MS, Director Gina Richardson, MS, CCPS, Program Consultant NAMI Oklahoma, Inc. (National Alliance on Mental Illness) Traci Cook, MS, Executive Director Department of Human Services Michaela Bishop, Director of Training / Behavior Support Services, Developmental Disabilities Services Linda Whaley, Program Manager II, Child Care Services Department of Rehabilitation Services Kim Osmani, MEd, Transition Coordinator Higher Education University of Oklahoma James Martin, PhD, Zarrow Family Professor of Learning Enrichment, Zarrow Center, Jeannine Rainbolt College of Education University of Oklahoma Health Sciences Center Wanda Felty, Community Leadership and Advocacy Coordinator, Oklahoma LEND Core Faculty, Center for Learning and Leadership, College of Medicine Martha Ferretti, PT, MPH, FAPTA Professor Chairman, Department of Rehabilitation Sciences, College of Allied Health Bonnie McBride, PhD, BCBA, Assistant Professor Pediatrics, Department of Pediatrics Norman Public Schools Justin Milner, Director of Special Services Oklahoma Developmental Disabilities Council Jenifer Randle, Advocacy and Training Coordinator Parents Ashley Dawson Angela Donley, Autism Coordinator, Oklahoma Family Network Jennifer Miller, BS, Co-Founder, Resource Director, Autism Center of Tulsa Amber Theinert Michelle Wilkerson, BA, Co-Founder, Program Director, Autism Center of Tulsa Private Providers Sherilyn Walton, LCSW, Family Support Program Coordinator, TARC

5 Executive Summary The Individuals with Autism and Their Families, Oklahoma Plan In April 2001, Howard Hendrick, the director of the Oklahoma Department of Human Services, brought together stakeholders "to discuss the development of a comprehensive plan that would move the state to the cutting edge of research, service delivery and supports for people with autism of all ages in the state of Oklahoma." Developmental Disabilities Services (DDS) of the Oklahoma Department of Human Services and the Lee Mitchener Tolbert Center for Developmental Disabilities (Department of Rehabilitation Science, College of Allied Health, University of Oklahoma Health Sciences Center) convened the Autism Working Group. Participants included representatives of the primary agencies and providers serving people with autism in Oklahoma, representatives of higher education, and parents of people with autism. The Autism Working Group (2002) created The Individuals with Autism and Their Families, Oklahoma Plan detailing their vision and recommendations. The Oklahoma Autism Network at the University of Oklahoma Health Sciences Center was established in October 2003 as a statewide administrative unit to facilitate the planning, financing and administration of the various recommendations of the Oklahoma Plan. The Oklahoma Family and Interagency Autism Council In 2009, the Oklahoma Autism Network convened the Oklahoma Family and Interagency Autism Council with membership from state agencies, parents, higher education, and community providers. As outlined in the Oklahoma Plan, this Council serves to: Facilitate the efficient and effective exchange of information on Autism Spectrum Disorder (ASD) activities among state agencies, professionals, and families; Coordinate ASD-related activities within the state for individuals across the ASD spectrum and across the lifespan; Increase public understanding of the member agencies' activities, programs, policies, and research related to ASD; Provide input to updates of the Individuals with Autism and Their Families, Oklahoma Plan; and Provide an opportunity for those invested in Oklahomans with autism and their families to network and build relationships that foster collaboration between agencies, organizations, and family members. Needs Assessment The Oklahoma Plan (2002, 2009) outlined the primary functions of the autism networks including developing and implementing a system for ongoing monitoring of the needs of people with autism over time, and alerting agencies to the changing needs of specific individuals or groups. The Oklahoma Family and Interagency Autism Council recommended the Oklahoma Autism Network design and implement a needs survey for parents or caregivers of individuals with ASD and individuals with ASD within the state of Oklahoma. In May of 2013, the Council published the first Oklahoma Autism Needs Assessment Survey (OANAS) of parents and caregivers report. The Council recommended conducting the survey every three years to gather ongoing information from parents and caregivers to provide current information for agencies, the legislature, and other key stakeholders regarding the needs of children and adults with ASD and their families. 1

6 This report outlines the methodology and findings of the 2015 Oklahoma Autism Needs Assessment Survey of parents and caregivers of children with ASD and individuals with ASD 18 years of age or older who live in Oklahoma. The results are reported in sections listed below. Key Findings of the Oklahoma Autism Needs Assessment Survey Demographic Characteristics Children birth through school-age, child demographics The ratio of males to females was 4.2:1. National comparison. The Centers for Disease Control and Prevention (CDC) reported that among the Autism and Developmental Disabilities Monitoring Network (ADDM) sites the ratio of males to females was 4.5:1 (Christensen et al., 2016). Twenty-nine or 15% of the children were American Indian/Alaska Native. National comparison. Less than 1% of children were identified as American Indian/Alaska Native by the ADDM (Christensen et al., 2016). On average, children were diagnosed after 48 months. National comparison. The age of diagnosis was similar to those reported by the ADDM (Christensen et al., 2016). Nearly 47% of children had an additional diagnosis of attention deficit disorder or attention deficit hyperactivity disorder, and 34.8% of the children had an anxiety disorder, and 17.8% of the children had an intellectual disability. National comparison. The ADDM reported 32% of children with ASD also had an intellectual disability (Christensen et al., 2016). Adults living with ASD (self-reported and caregiver reported) Seven adults completed the survey about themselves and 23 caregivers completed the survey about their adult children aged 18 years and older and who no longer attended high school. The majority of individuals were identified as white. Twenty-eight percent of individuals who self-reported and twenty-six percent of individuals reported by their caregivers were American Indian / Alaska Native. Anxiety disorders (e.g., obsessive-compulsive disorder, panic disorder, and phobias) were reported for 85.7% of individuals who self-reported and 60% reported by caregivers. Impact of ASD on the Family Children birth through school-age Seventy-two percent of caregivers of children 11 years or younger had not developed long-term care plans for when they are no longer able to care for their children. Of those with childcare arrangements, nearly 41% depended on relatives and the majority were on an occasional basis. 2

7 Of the 59 caregivers who stopped working outside the home, 15 reported one caregiver stopped working outside the home while the other increased their work hours. Caregivers used numerous sources to gain information about autism. The top three sources included the internet (87.3%), Autism Speaks (78%), and books (72%). Caregivers who responded about their adult children Of the 23 caregivers, 16 have developed or were developing long-term plans for when they can no longer able to care for their adult children Of the 20 mothers, eight stopped working outside the home, seven changed their work schedule, and seven lost promotion and advancement opportunities. Eleven caregivers decreased their work hours including six mothers and five fathers. Access to Health Services Children birth through school-age Thirty caregivers (20.1%) were denied insurance coverage for their child with ASD during the last three years including four children aged 0-5 years, 17 aged 6-11 years, and nine aged years. Ninety-two (62%) caregivers purchased private services for their child with ASD during the last three years including 54.3% of children aged 0-5 years, 63.8% aged 6-11 years, 71.1% aged years, and 44.4% aged years. Of the 85 caregivers who responded, the average monthly cost for services per child was $1,637, and services ranged from $100 for sensory integration to $1,186 for applied behavior analysis. The most frequently reported services not covered by insurance were applied behavior analysis (17.6%), social skills training (12.9%), and speech language therapy (10.6%). In general, waiting lists, backlogs, or other problems getting appointments were a common barrier to accessing most professional services. Adults living with ASD (self-reported and caregiver reported) The majority of caregivers reported their adult children have public only insurance. Five had private insurance only and none paid out-of-pocket only. Twelve caregivers who reported about their adult children purchased private services during the last three year, and the average monthly cost of purchased services was $839. The average monthly cost by service ranged from $124 for a psychiatrist and $2,149 for supported employment. Of the six individuals who self-reported, the average monthly cost of purchased services was $380. The average monthly cost by service ranged from $49 for a psychologist to $132 for medication. Nearly 29% of individuals who self-reported and 31.8% of caregivers identified a lack or shortage of providers. 3

8 Impact of Accessed Public Services School services (children aged 3 through 21 years attending school) Over 70% of parents reported their student received speech-language therapy, 5 received occupational therapy, and 45.5% received one-on-one support from a paraprofessional or teacher assistant as part of their Individualized Education Program (IEP). Less than 20% of student received assistive technology, functional behavior assessment, job readiness training or work experience, sensory integration therapy, or social skills training as part of their IEP. Less than 20% of caregivers received parent counseling and training as part of their child s IEP. During the school year, 107 of the 148 (72.3%) students missed school because of autism symptoms. The majority missed between 1 and 5 days. During the school year, 54 of 148 (36.4%) parents were asked to pick up their children early from school due to behavior. Twelve students were suspended during the school year. Of the 12 students, 9 were suspended between 3 to 5 days, and 3 between 1 to 2 days. Over 56% of caregivers reported that their student needed social skills training to be successful in school. Fifty percent of caregivers strongly agreed or agreed that their children were doing better as a direct result of services at school. Of the 174 parents who responded to the survey, 75 (43.1%) were aware of Developmental Disabilities (DDS) services. Of the ten caregivers who reported they were receiving DDS waivered services, nine strongly agreed or agreed their son or daughter was doing better at home as a direct result of the waivered services. Forty-four caregivers applied for the Medicaid Waiver program. Thirty-five had not yet received the services. Their wait time ranged from less than one year to more than six years. Department of Human Services, Developmental Disability Services Forty-four (59.5%) caregivers applied for the Medicaid Waiver program. Thirty-five (40.5%) had not yet received the services. Their wait time ranged from less than one year to more than 6 years. Of the ten individuals who received waivered services, five were on the In-Home Support Waivers for Adults, one was on the In-Home Support Waiver for Children, and three were on the Community Waiver. The majority of caregivers reported that their adult child is doing better as a result of waivered services. The majority of families reported they experienced less overall family stress, less overall stress, and less financial worry. 4

9 Crisis Intervention Children birth through school-age Over 45% of families experienced a crisis in which they were concerned for the safety of their child or of themselves. During times of crisis, nearly 45% of families contacted a family member or friend, 30% of families handled it themselves, and 29% contacted their child s mental health provider. Three caregivers reported that their child required an inpatient hospitalization for behavioral or psychiatric reasons during the past 12 months. Two children were admitted multiple times during the past year. Over 17% of caregivers reported an interaction with the police. Three caregivers reported their child had been charged with a crime during the last three years. Adults living with ASD (self-reported and caregiver reported) Nearly 22% or 18 of the 23 caregivers indicated their families experienced a crisis in which they were concerned for the safety of their adult child or of themselves. Nearly 45% of families contacted a family member or friend during a crisis. Thirty-nine percent contacted their child s mental health provider. Four caregivers reported their adult child had been arrested, and none were charged with a crime during the last three years. Two individuals who self-reported had been charged with a crime during the last three years, and one served time in jail. Employment Adults living with ASD (self-reported and caregiver reported) Four of the seven individuals who self-reported were employed. Three were employed full-time and 1 was employed less than 30 hours per week. Nine caregivers reported their adult children were employed. Two were employed full-time and seven were employed less than 30 hours per week. 5

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11 Table of Contents Executive Summary... 1 Autism Spectrum Disorder (ASD)... 9 Methodology Limitations Results Demographic Characteristics o Children birth through school-age, caregiver demographics o Children birth through school-age, child demographics o Caregivers who responded about their adult children o Adults living with ASD demographics (self-reported and caregiver reported) Impact of ASD on the Family o Children birth through school-age o Caregivers who responded about their adult children Access to Health Services o Children birth through school-age o Adults living with ASD (self-reported and caregiver reported) Impact of Accessed Public Services o School Services (children aged 3 through 21 years attending school) o Department of Human Services, Developmental Disability Services Crisis Intervention o Children birth through school-age o Adults living with ASD (self-reported and caregiver reported) Employment o Adults living with ASD (self-reported and caregiver reported) Additional Comments o Children birth through school-age o Adults living with ASD (self-reported and caregiver reported) References

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13 Autism Spectrum Disorder (ASD) What is Autism Autism spectrum disorder (ASD) is a brain based disorder that usually appears before the age of three. While individuals with ASD exhibit a wide range of functional abilities, they experience varying degrees of difficulty in social interaction, communication, and behavior. The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) (American Psychiatric Association, 2013) outlines the criteria for diagnosis of autism spectrum disorder. Under the prior DSM (DSM-IV) criteria, individuals could be diagnosed with one of four separate disorders that included autistic disorder, Asperger s disorder, childhood disintegrative disorder, or pervasive developmental disorder not otherwise specified. The DSM-5 includes only autism spectrum disorder. Anyone with one of the four diagnosis used under the DMS-IV should qualify for a diagnosis of autism spectrum disorder under the criteria used in the DSM-5. We do not know all the causes of ASD. However, through research we have learned that there are likely multiple contributing factors, including biological, environmental, and genetic factors. Currently no cure exists for ASD; however with effective intervention, individuals with ASD make progress and develop new skills. Prevalence The Centers for Disease Control and Prevention (CDC) estimated the prevalence of ASD among children aged 8 years was 1 in 68 in the U.S. (Christensen et al., 2016). The CDC continues to work to find out how many children have ASD, discover the risk factors, and raise awareness of the signs ( Currently, we do not know how many Oklahomans have ASD. Our best guess is based on information the Oklahoma State Department of Education gathers about children receiving special education services through their annual child count. Through the annual child count, children are identified in one of 13 categories, including Autism. In 2014, 4,885 (4.6% of all children receiving special education) children aged 3-21 years were identified under the autism category. This number does not include children with ASD who are served under another category, children with ASD who are not receiving special education services through the local public school, or those under age 3 or over age 21. Children served under Autism Category in Oklahoma Child Count by Age Group Oct 12-Nov 13-Dec Percent Change Age 3-5 * ,822 Age ,405 1,674 1,923 1,899 1, Age ,346 1,540 1,816 2,067 2,417 1,690 Age ,386 TOTAL (Age 3-21) 454 3,062 3,586 4,121 4,389 4, * not reported 9

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15 Methodology Overview and Sampling The study was a research survey to examine the needs of individuals with ASD as described by them or their parents or caregivers. Quantitative data was collected through an online survey. Purposive and snowball sampling were used. Targeted state and private programs and parent organizations disseminated the announcement of the survey. Those eligible to participate in the survey were parents and caregivers of individuals with ASD and individuals with ASD 18 years of age or older who live in Oklahoma. Development of Survey Questions The 2015 Oklahoma Autism Needs Assessment Survey (OANAS) is the second statewide survey to target specifically families and individuals affected by ASD. The first OANAS was conducted in 2012 and included the collection of information about demographics, service experiences and needs (screening and diagnosis, early intervention and school services, therapeutic interventions, etc.), barriers and / or limitations to accessing services, employment, waiver services, adult services, crisis, and financial resources. The 2012 OANAS included questions adapted from surveys by the Indiana Resource Center for Autism (Bellini & Pratt, 2009) and the Pennsylvania Department of Public Welfare Bureau of Autism Services (2011). To improve the 2015 OANAS, questions from the National Survey of Children s Health (CDC, 2013), the National Survey of Children with Special Health Care Needs (Bramlett MD, Blumberg SJ, Ormson AE, et al., 2014), and the 2012 OANAS survey questions were reviewed by colleagues and members of the Oklahoma Family and Interagency Autism Council for content, wording and changes. The questions for parents and caregivers of individuals with ASD were divided into nine sections including demographics, early intervention, education services, adult children, waiver services, purchased services, crisis, autism information, and financial resources. Questions for individuals with ASD were divided into six sections including demographics, education, employment, living situation and relationships, health/education services, and crisis. The University of Oklahoma Health Sciences Center Institutional Review Board approved the study. Electronic Survey Description The survey was available for three months in an online format using SurveyMonkey. The software allowed for skip logic so that participants were presented with questions based on prior responses (see Figure 1. for the survey algorithm). For instance, a parent who indicated that he/she had a child birth to 36 months moved forward to the early intervention category and skipped the education services category. The survey format also allowed participants to skip questions they did not wish to answer. They could also save their responses and complete the survey at a later time. SurveyMonkey provided Secure Sockets Layer (SSL) technology that allowed for the collection of anonymous responses through a secure, encrypted connection. Recommended documents to help caregivers complete the survey for their child with ASD included: Individualized Family Service Plan (IFSP) (SoonerStart Early Intervention Program); Individualized Education Program (IEP) (Special Education and Related Services); or Individualized Plan (IP) (Developmental Disabilities Services) The survey for parents and caregivers consisted of 170 questions. However, the number of questions answered depended on the age of the individual with ASD. Participants never completed all 111 questions. Skip logic, described above, allowed the 11

16 participant to answer questions relevant to the particular age population. The survey for individuals with ASD consisted of 61 questions. The survey questions were designed to help participants answer questions as quickly as possible. Questions formats included drop-down box, select from a list, and open-ended. Open-ended questions were minimized. To reach as many potential participants as possible, recruitment flyers were disseminated through personal contacts and s by state and local programs serving individuals with ASD including the Oklahoma Autism Network, parent support organizations, local private practitioners, and state agencies such as the Oklahoma State Departments of Education, Health, Human Services and Mental Health and Substance Abuse, as well as through media. Potential participants were directed to the OUHSC Oklahoma Autism Network website ( where consent was described and a link to the on-line survey was provided. Participants could quit the survey at any point and the majority completed the survey in less than 30 minutes. Figure 1. Survey Algorithm 12

17 Survey Participants Of the participants, 256 selected I am a parent or caregiver of an individual with an autism spectrum disorder. Of the 256 surveys, 174 were complete and included in the analysis. Fifteen participants selected I am an individual with autism spectrum disorder and 18 years of age or older. Of the 15 responses, 8 were complete and included in the analysis. Data Analysis Descriptive statistics were used to summarize participants responses to the survey questions. Response data were presented in means, medians, ranges, and frequencies, and relationships between responses were examined and reported. The analysis is organized by: Children birth through school-age, and Adults living with ASD (18 years or older and no longer in high school) (self-reported and caregiver reported) The analysis is presented differently in the Impact of Accessed Public Services section by: Educational services provided by local education agencies (children aged 3 through 21 years attending school), and Developmental Disability Services provided through the Oklahoma Department of Human Services 13

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19 Limitations This survey included several limitations. Because this survey was conducted in an online format, caregivers and individuals with limited access to the internet may not have been able to participate. Additionally, a high percentage of caregivers reported an annual household income of $50,000 or more. The median range was $60,000 to $64,999. During 2014, the median household income for the state of Oklahoma was $46,235 (U.S. Census Bureau, 2014). Of the 150 caregivers who responded to the survey question about workforce participation, 132 reported workforce participation about a second adult living in the home. They selected from the following: yes, part-time (less than 30 hours per week); yes, full-time (30 hours or greater per week); or no. In 73 of the 132 households (55.3%), both adults living in the home were employed. The majority (87.68%) worked 30 hours or greater per week. In spite of these limitations, this survey provides the most comprehensive information to date regarding children and adults with ASD and their families who live in Oklahoma. These results provide information that can assist agency leaders, the legislature, and professionals when making decisions about needs of individuals with ASD and their families. For future surveys we will consider additional methods to reach families with limited access to the internet. Additional resources will be required to conduct the survey through multiple means, and to assure that we reach families of lower socioeconomic status and various ethnic backgrounds. 15

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21 Demographic Characteristics CHILDREN BIRTH THROUGH SCHOOL-AGE Caregiver Demographics Of the 174 responses, 151 were parents or caregivers of children birth through school-age. Relationship to Child n=151 Parent 90.7% 137 Grandparent 4.0% 6 Foster Parent 0.7% 1 Guardian 2.7% 4 Other 2.0% 3 Mother Father Age n=132 n=106 Range Mean Median Race / ethnicity (all that apply) n=132 n=107 American Indian / Native American / Alaska Native 7.6% 8.4% Asian 0.9% Black / African American 1.5% 1.9% Hispanic, Latino or Spanish 5.3% 3.7% Native Hawaiian / Pacific Islander 0.9% White / Caucasian 91.7% 91.6% Other 2.3% 0.9% Educational level n=132 n=107 Professional (MA, MS, ME, MD, PhD, etc.) 23.5% 20.6% Four-year college graduate (BA, BS, BM) 35.6% 29.9% 1 to 3 years college (e.g. business schools) 31.8% 25.2% Completed vocational, trade, or business school 5.3% 7.5% High school graduate 3.0% 12.1% 9th-12th grade, no diploma 0.8% 4.7% 8th grade or less Marital Status n=131 n=107 Married 77.1% 92.5% Separated 2.3% 0.9% Divorced 16.0% 2.8% Widowed 1.5% 0.9% Never Married 3.1% 2.8% Caregivers from 27 counties participated in the survey. Nearly 91% of the respondents were parents. The average number of children per household was 2.7, and the average number of children with ASD per household was 1.1. Seventeen caregivers reported having more than one child with ASD in the home, and eleven caregivers adopted their children with ASD. 150 caregivers reported the child lived in the parent s home and almost 98% were satisfied or very satisfied with their living situation. Of 169 caregivers, 77% of mothers were married, 16% divorced and 4.6% single. The majority of caregivers had a high school degree, and 59% of the mothers earned a college degree, of which nearly 24% had a professional degree. Almost 51% of fathers had a college degree. 17

22 Almost 60% of respondents Annual Household Income During 2014 n=141 annual household income was $50,000 or more, with 23.4% making over $100,000 annually. $100,000 or above $95,000-$99,999 $90,000-$94,999 $85,000-$89,999 $80,000-$84,999 $75,000-$79,999 $70,000-$74,999 $65,000-$69,999 $60,000-$64,999 $55,000-$59,999 $50,000-$54,999 $45,000-$49, % 0.7% 2.1% 2.8% 4.3% 4.3% 3.5% 3.5% 5.0% 6.4% 6.4% 23.4% The median range was $60,000 to $64,999. According to the U.S. Census Bureau (2014), the median household income for Oklahoma is $46,235. The largest numbers of responses were from caregivers living in Oklahoma, Cleveland and Tulsa Counties where the median household income is $46,584, $55,626, and $48,926 respectively. $40,000-$44,999 $35,000-$39,999 $30,000-$34,999 $25,000-$29,999 $20,000-$24, % 6.4% 5.7% 6.4% 5.7% National comparison. The median household income for the United States during 2014 was $53,482. $15,000-$19, % $10,000-$14, % $7,500-$9, % less than $7, % 5.0% % 25.0% 18

23 Child Demographics In this section we described demographic and diagnostic information reported by caregivers. In some sections we compared the information with 2012 statistics reported by the Centers for Disease Control and Prevention (CDC) from the Autism and Developmental Disabilities Monitoring Network (ADDM). However, we have not concluded that our data set is a representative sample for the State of Oklahoma. We reported national data for information purposes, not as a comparison. Age Child n=150 Age (in years) 1-2 yrs. 2.0% yrs. 21.3% yrs. 16.7% yrs. 22.7% yrs. 19.4% yrs. 12.3% yrs. 6.1% 9 Nearly 63% of the children with ASD were aged 11 years or younger. 18.4% of the children with ASD were aged 15 years or older. Gender 18.9% Child's Gender n= % Male Female Child's Gender by Age 0-5 years, n= years, n= years, n= years, n=9 Male Female Among the 148 children, 120 were male and 28 were female representing a male to female ratio of 4.2:1. The CDC reported in the ADDM the ratio of male to female was 4.5:1 (Christensen et al., 2016). 19

24 1% 15% Race/Ethnicity n=150 1% 5% 6% American Indian / Alaska Native Asian Black / African American Race / Ethnicity The majority of children were identified as white. Twenty-nine children were American Indian / Alaska Native. There has been very little reported about the needs of this population as a group. Less than 1% of Hispanic, Latino or Spanish children were identified as American Indian / White / Caucasian Alaska Native by the ADDM (Christensen et al., 72% Other 2016). 13.9% Child's Autism Diagnosis n= % Autism Diagnosis Among caregiver respondents, 66.2% had a diagnosis of Autism. One caregiver who reported other suspected high Asperger Syndrome functioning autism but the child had not 19.2% 66.2% PDD, NOS Other received formal testing. Caregivers were asked what type of professional diagnosed their child, and 49% indicated their child was diagnosed by a psychologist. Child's Autism Diagnosis by Age Autism Asperger Syndrome PDD, NOS Other Type of Professional Diagnosing n= years, n= years, n= years, n= years, n=9 20

25 Age of Diagnosis n=151 Average Median Range ADDM Median Diagnosis 4 years, 9 months 5 years 12 months 27 years Autism (n=98) 4 years, 2 months 4 years 12 months 14 years 3 years, 10 months PDD-NOS (n=21) 4 years, 4 months 4 years, 6 months 20 months 9 years 4 years, 1 months Aspergers (n=29) 6 years, 11 months 6 years 21 months 27 years 6 years, 2 months ADDM: Autism and Developmental Disabilities Monitoring Network (Christensen et al., 2016) On average, children were diagnosed after 48 months. The age of diagnosis was similar to those reported by the ADDM % % % 15.0% 1 5.0% Additional Diagnoses (select all that apply) n=135 Nearly 47% of children had an additional diagnosis of attention deficit disorder or attention deficit hyperactivity disorder, and 34.8% of the children had an anxiety disorder, 17.8% of the children had an intellectual disability, and 14.1% of the children had a learning disability. National comparison. The ADDM reported 32% of children with ASD also had an intellectual disability (Christensen et al., 2016). 21

26 Additional Diagnoses by Age (select all that apply) years, n= years, n= years, n= years, n=9 The diagnosis of attention deficit disorder or attention deficit hyperactivity disorder was reported for 36.7% of children aged birth through 5 years, 56% of children aged 6 through 11 years, 46.7% of children aged 12 through 17 years, and 33.3% of children aged 18 through 21 years. Anxiety disorders (e.g., obsessive-compulsive disorder, panic disorder, and phobias) was reported for 30% of children aged 6 through 11 years, 46.7% of children aged 12 through 17 years, and 66.7% of children aged 18 through 21 years. Behavioral or conduct disorder (e.g., oppositional defiant disorder or conduct disorder) was reported for 23.3% of children aged birth through 5 years and 22% of children aged 6 through 11 years. Of children aged birth through 5 years, 36.7% of caregivers reported no additional diagnosis. 22

27 CAREGIVERS WHO RESPONDED ABOUT THEIR ADULT CHILDREN LIVING WITH ASD Caregiver Demographics Of the 174 responses, 23 were caregivers of adult children aged 18 years and older and who no longer attended high school. Below is demographic information about the caregivers. Relationship to Child n=23 Parent 100% 23 Grandparent 0 Foster Parent 0 Guardian 0 Other 0 All of the caregivers who completed the survey about their adult children were parents including 20 mothers and 3 fathers. Mother Father Age n=21 n=18 Range Mean Median Race / ethnicity (all that apply) n=22 n=18 American Indian / Native American / Alaska Native 22.7% 5.6% Asian 4.5% Black / African American Hispanic, Latino or Spanish Native Hawaiian / Pacific Islander White / Caucasian 86.4% 94.4% Other Educational level n=22 n=18 Professional (MA, MS, ME, MD, PhD, etc.) 40.9% 22.2% Four-year college graduate (BA, BS, BM) 36.4% 33.3% Associate degree 5.6% 1 to 3 years college (e.g. business schools) 18.2% 22.2% Completed vocational, trade, or business school 5.6% High school graduate 4.5% 11.1% 9th-12th grade, no diploma 8th grade or less Marital Status n=22 n=19 The median age of parents was 54.0 for mothers and 56.0 for fathers. The majority of parents were white, and 22.7% of mothers and 5.6% of fathers were also American Indian / Native American / Alaska Native. All parents had a high school degree, and 77.3% of the mothers earned a college degree, of which nearly 41% had a professional degree. Almost 56% of fathers had a college degree. Of 22 mothers, 17 were married. Married 77.3% 89.5% Separated Divorced 13.6% 5.3% Widowed 4.5% Never Married 4.5% 5.3% 23

28 $100,000 or above $95,000-$99,999 $90,000-$94,999 $85,000-$89,999 $80,000-$84,999 $75,000-$79,999 $70,000-$74,999 $65,000-$69,999 $60,000-$64,999 $55,000-$59,999 $50,000-$54,999 $45,000-$49,999 $40,000-$44,999 $35,000-$39,999 $30,000-$34,999 $25,000-$29,999 $20,000-$24,999 $15,000-$19,999 $10,000-$14,499 $7,500-$9,999 less than $7,500 Annual Household Income During 2014 n=23 4.3% 4.3% 4.3% 4.3% 4.3% 4.3% 4.3% 4.3% 4.3% 8.7% 8.7% 13.0% 30.4% 5.0% % 25.0% % Almost 60% of respondents annual household income was $50,000 or more, with 23.4% making over $100,000 annually. The median range was $80,000 to $84,999. According to the U.S. Census Bureau (2014), the median household income for Oklahoma is $46,235. The largest numbers of responses were from caregivers living in Oklahoma, Cleveland and Tulsa Counties where the median household income is $46,584, $55,626, and $48,926 respectively. National comparison. The median household income for the United States during 2014 was $53,

29 ADULTS LIVING WITH ASD (self-reported and caregiver reported) Demographics Of the 30 responses, 7 adults completed the survey about themselves and 23 caregivers completed the survey about their adult children aged 18 years and older and who no longer attended high school. Below is demographic information about the adults living with ASD. Adults with ASD n=30 Self-reported 23.3% 7 Caregiver reported 76.7% 23 Adults with ASD Selfreported Caregiver reported Age n=7 n=23 Range Mean Median Race / ethnicity (all that apply) n=7 n=23 American Indian / Native American / Alaska Native 28.6% 26.0% Asian 4.3% Black / African American Hispanic, Latino or Spanish 14.3% Native Hawaiian / Pacific Islander White / Caucasian % Educational level n=7 n=23 Professional (MA, MS, ME, MD, PhD, etc.) 14.3% 4.3% Four-year college graduate (BA, BS, BM) 14.3% 4.3% Associate degree 14.3% 1 to 3 years college (e.g. business schools) 14.3% 17.4% Completed vocational, trade, or business school 14.3% 8.7% High school graduate 28.6% 52.5% 9th-12th grade, no diploma 4.3% 8th grade or less 8.7% Marital Status n=7 n=23 Married 28.6% Separated Divorced 14.3% Widowed Never Married 57.1% 10 The adults living with ASD were from 12 counties in Oklahoma. Adults with ASD Age (in years) n= yrs. 16.7% yrs. 43.3% yrs. 26.7% yrs yrs yrs yrs. 3.3% 1 The majority of individuals were identified as white. Twenty-eight percent of individuals who self-reported and twenty-six percent of individuals reported by their caregivers were American Indian / Alaska Native. The majority of individuals had a high school degree, and three individuals who self-reported and two individuals reported by caregivers earned a college degree. The majority of individuals had never married. 25

30 Have Children Nearly half of all individuals did not plan to have children. 60% 50% 40% Three of the seven individuals who selfreported had children. 30% 20% 10% 0% Yes No, but planning on having children No, undecided No, I do not want children Self-Reported n=7 Parent Reported n=23 Annual Income $100,000 or 28.6% $95,000-$99,999 $90,000-$94,999 $85,000-$89,999 $80,000-$84,999 $75,000-$79,999 $70,000-$74,999 $65,000-$69,999 $60,000-$64,999 $55,000-$59,999 $50,000-$54,999 $45,000-$49,999 $40,000-$44, % $35,000-$39,999 $30,000-$34,999 $25,000-$29,999 $20,000-$24, % $15,000-$19,999 $10,000-$14, % $7,500-$9,999 less than $7, % 87.0% 0% 20% 40% 60% 80% 100% Parent Reported n=23 Self-Reported n=7 Over 70% of individuals who selfreported and 100% of individuals reported by caregivers had an annual household income less than $45,000 and 87% of caregivers reported their adult children earned $7,500 or less. The median range for individuals who selfreported and for individuals reported by caregivers was less than $7,500. According to the U.S. Census Bureau (2014), the median household income for Oklahoma is $46,235. The largest numbers of responses were from caregivers living in Oklahoma, Cleveland and Tulsa Counties where the median household income is $46,584, $55,626, and $48,926 respectively. National comparison. The median household income for the United States during 2014 was $53,482. Two individuals who self-reported earned $100,000 or more and four earned less than $7,500 per year. 26

31 Gender Gender n=29 10 Gender by Respondent 17.2% 8 6 Male Female 4 Male Female 82.8% Self-Reported n=7 Caregiver Reported n=22 The majority of individuals were male for both groups. Diagnosis Autism Diagnosis by Respondent 1 Autism Diagnosis n= Autism Asperger Syndrome PDD, NOS Other 80% 70% 60% 50% 40% 30% 20% 10% 0% Autism Asperger Syndrome PDD, NOS Other Self-Reported n=7 Caregiver Reported n=23 Among all individuals, 60% had diagnosis of Asperger syndrome. Twenty-six percent of the individuals reported by caregivers had a diagnosis of pervasive developmental disorder not otherwise specified. 27

32 Additional Diagnoses (select all that apply) n= Nearly 67% of individuals had an anxiety disorder (e.g., obsessive-compulsive disorder, panic disorder, and phobias), about 48% had an attention deficit disorder or attention deficit hyperactivity disorder, and 37% had an intellectual disability. 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% Additional Diagnosis by Respondent (select all that apply) Self-Reported n=7 Caregiver Reported n=20 Anxiety disorders (e.g., obsessive-compulsive disorder, panic disorder, and phobias) were reported for 85.7% of individuals who self-reported and 60% reported by caregivers. Seventy-one percent of individuals who self-reported had depression compared to 15% of individuals reported by caregivers. The diagnosis of attention deficit disorder or attention deficit hyperactivity disorder was reported for 57.1% of individuals who self-reported and 45% of caregiver reported. Forty-five percent of caregivers indicated their adult children have an intellectual disability. 28

33 Educational Participation Attended School at Time of Survey 70% 60% 50% 40% 30% 20% 10% 0% High school Two-year college Four-year college Graduate school Career technology/ vocational school No, but I would like to be No Self-Reported n= 7 Caregiver Reported n=23 One individual who self-reported and three individuals reported by caregivers attended college or graduate school. Four of the seven individuals who self-reported were not attending school but wanted to attend a school program. Of the 23 individuals reported by caregivers, 15 were not attending school Status of School Enrollment Full-time Part-time Self-Reported n=1 Caregiver Reported n=6 Of the seven individuals who attended a school program, four attended full-time Aware of Assistance and/or Resources for Individuals with Disabilities at School Yes, but I don t use them Yes, and I do use them No One individual who self-reported and two caregivers reported their adult children had been identified by their schools as needing accommodations (e.g. tutoring, special housing, counseling). Self-Reported n=1 Caregiver Reported n=6 29

34 Education Needs Self-Reported, n=1 Answer Options receiving receiving, but need receiving, but do not not receiving, not receiving Response Count more need but need Special housing Test-taking assistance Academic counseling Note-taking assistance Tutoring Peer mentoring/social supports One individual reported they did not receive special housing or peer mentoring / social supports but needed them. Education Needs Caregiver Reported, n=6 Answer Options receiving receiving, but need receiving, but do not not receiving, not receiving Response Count more need but need Special housing Test-taking assistance Academic counseling Note-taking assistance Tutoring Peer mentoring/social supports Caregivers reported their adult children received but needed more assistance with housing, test-taking, note-taking, tutoring and peer mentoring or social support. Three caregivers indicated their adult children received but needed more academic counseling. Unmet needs included test-taking, academic counseling, note-taking, tutoring and peer mentoring or social supports. 30

35 Friendships Developed by Participating in School Activities Self-Reported, n=1 Answer Options very strong Casual No friendships Have not Response friendships friendships developed participated Count Peer mentoring Dorm-sponsored social activities Student groups Intramural and club sports One individual reported they did not develop friendships by participating in school activities. Friendships Developed by Participating in School Activities Caregiver Reported, n=6 Answer Options very strong Casual No friendships Have not Response friendships friendships developed participated Count Peer mentoring Dorm-sponsored social activities Student groups Intramural and club sports Half or more of the individuals had not participated in school activities. The friendships varied among those who participated in dorm-sponsored social activities and student groups. One individual developed a casual friendship through peer mentoring. One individual developed a casual friendship through intramural and club sports Plans after Graduation Fifty percent of caregivers reported their adult children will work full-time after graduation. One individual who self-reported did not have plans for after graduation. Continue my education Work for pay or be self-employed full-time (30 hours or greater per week) Work for pay or be self-employed part-time (less than 30 hours per week) I don t know Self-Reported n=1 Caregiver Reported n=6 31

36 Living Arrangements Living Arrangements Self-Reported n= % % % 15.0% 1 5.0% Independently: alone Independently: with roommates Independently: with people who are dependent on me On own with support With parents or other relatives In a residential facility In a group home Five of the seven individuals lived independently; one lived alone, three lived with people who were dependent on the individual with ASD, and one lived alone with support. Living Arrangements Caregiver Reported n= At home with one parent At home with both parents or one parent and partner At home with other family members/ caregivers Group Home Residential Facility Independent Living with Support (live-in or visiting care givers) Independent Living without Support College Dormitory Seventeen of the adult children with ASD lived at home with a parent, parents, or other family members or caregivers. Three individuals lived independently with support and one lived at college. 32

37 Five of the seven individuals who self-reported were satisfied or very satisfied with their living Satisfaction with Living Arrangements situation. Two were dissatisfied and indicated they needed the following to change their satisfaction, housing with supports too bright for group home but need support and guidance Money income to help cover the costs would make it better. More agreeable to live here. Where i can focus on making my house a home. I dont feel Very Satisfied Satisfied Dissatisfied Very Dissatisfied comfortable calling it home when my monthly budget fluctuates out of my control. Self-Reported n=7 Caregiver Reported n=23 Sixteen caregivers reported they were satisfied with their adult child s living situation; whereas, seven were dissatisfied or very dissatisfied and indicated the following would change their satisfaction, Have the home, 3 roommates, and 24/7 staffing Supported living in community or group home State Moneys would like to get help to take care of child Currently he resides in a group home 187 miles away it is far away. Relationships Satisfaction with Relationships Self-Reported n=7 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% Romantic Friendships Mentors Friends to confide in Friends to socialize with Parents Significant other Children Siblings I do not have, but would like... I do have, but would like more... I am satisfied with my... N/A Six of the seven individuals indicated they either did not have or would have liked more friendships. All seven individuals reported they either did not have or would have liked more friends to confide and to socialize. Five of the indivduals indicated they either did not have or would like more romantic relationships. Five of the individuals reported they either did not have or would like more mentors. 33

38 Participation in Activities Participation in Activities Per Week Self-Reported Less than 1 hour 1 thru 5 hours 6 thru 10 hours 11 to 20 hours 21 to 30 hours 31 to 40 hours more than 40 hours Response Count Community groups/organizations 57.1% 14.3% 28.6% 7 Employment 42.9% 14.3% 42.9% 7 Exercise 28.6% 42.9% 14.3% 14.3% 7 Hobbies or special interests 14.3% 28.6% 42.9% 14.3% 7 Household chores/ duties 14.3% 42.9% 28.6% 14.3% 7 School 85.7% 14.3% 7 Spiritual or religious activities 42.9% 57.1% 7 Social activities with friends 57.1% 42.9% 7 Volunteer work 42.9% 57.1% 7 Other Most of the individuals spent less than one hour per week participating in community groups or organizations, school, and social activities with friends. Most of the individuals spent less than five hours exercising, completing household chores and duties, participating in spiritual or religious activities, and volunteer work. Six of the individuals spent less than 10 hours participating in hobbies or special interest. Three individuals spent less than one hour and three spent more than 40 hours in employment activities. Participation in Activities Per Week Caregiver Reported Less than 1 hour 1 thru 5 hours 6 thru 10 hours 11 to 20 hours 21 to 30 hours 31 to 40 hours more than 40 hours Response Count Community groups/organizations 52.6% 26.3% 15.8% 5.3% 19 Employment 44.4% 5.6% 5.6% 16.7% 11.1% 11.1% 5.6% 18 Exercise Hobbies or special interests 9.5% 57.1% 19.0% 9.5% 4.8% 21 Household chores/ duties 9.5% 76.2% 14.3% 21 School 6 6.7% 13.3% 15 Spiritual or religious activities 27.8% 55.6% 5.6% 11.1% 18 Social activities with friends 47.1% 23.5% 23.5% 5.9% 17 Volunteer work 37.5% 43.8% 18.8% 16 Other 62.5% 25.0% 12.5% 8 Most of the individuals spent less than one hour per week participating in community groups or organizations, school, and social activities with friends. Most of the individuals spent less than five hours exercising, completing household chores and duties, participating in hobbies or special interests, spiritual or religious activities, and volunteer work. Half of the individuals spent less than one hour in employment activities. 34