A Study of Family Caregiving

Quality of Life of Adolescents and Adults with an Autism Spectrum Disorder
Report #15

Marsha Mailick Seltzer, Ph.D., Jan S. Greenberg, Ph.D., Waisman Center University of Wisconsin – Madison
Gael Orsmond, Ph.D., Sargent College of Health and Rehabilitation Sciences, Boston University

Recent interest in the transition to adulthood in individuals with autism spectrum disorders (ASD) has been motivated in part by the surge of youth with these diagnoses currently exiting high school and entering adulthood. At the present time, there is little consensus about how best to assess the quality of life (QoL) of adults with ASD.

Past research has found that adults with ASD face many challenges in achieving the conventional markers of adulthood – becoming employed and self-supporting, living independently, establishing one’s own family, developing a network of friends, and contributing to the community. Some have called for a reconceptualization of QoL for adults with ASD, but little research has been conducted that can inform such a reconceptualization or identify strategies for improving the QoL of adults with ASD.

It is because of this lack of understanding of the adult population with ASD, and our collective knowledge based on our research over the past 14 years, that we are well positioned to trace trajectories of development during adulthood, as well as to identify factors that have the potential to improve QoL during the adult years.

Download PDF: http://www.waisman.wisc.edu/family/reports/autism/Reports15.pdf

Aging enigma

SFARI (Simons Foundation Autism Research Initiative)
By Deborah Rudacille

September 13, 2011

Nearly 70 years have passed since autism entered the scientific literature, and yet certain aspects of the disorder remain almost wholly unexplored. Even more than gender differences in autism, the effect of aging on individuals with the disorder is a blank slate.

More … http://sfari.org/news-and-opinion/blog/2011/aging-enigma

Autistic teens thrive with chance to shine

Futurity – August 2, 2012
Posted by Andrea Estrada-UCSB

Autistic adolescents are able to make friends when given a chance to play up their strengths—like high intelligence and very specific interests, say researchers.The junior high and high school years are emotionally challenging even under the best of circumstances, but for adolescents with autism spectrum disorders (ASD), that time can be particularly painful. Lacking the social skills that enable them to interact successfully with their peers, these students are often ostracized and even bullied by their classmates.

The new study conducted by researchers at the Koegel Autism Center at University of California, Santa Barbara also shows that the area of the brain that controls such social behavior is not as damaged in adolescents with ASD as was previously believed.

The findings appear in a recent issue of the Journal of Positive Behavior Interventions.

read more

 

Autistic young adults missing out on much-needed services

Nearly 40 percent fall through the cracks after high school, study finds.

Note: View video within article.

What happens to young adults with autism spectrum disorders (ASDs) once they graduate high school and are no longer entitled to services?

“National, state and local policy makers have been working hard to meet the needs of the growing numbers of young children identified as having an ASD,” says Paul Shattuck, PhD, assistant professor at the Brown School at Washington University in St. Louis. “However, there has been no effort of a corresponding magnitude to plan for ensuring continuity of supports and services as these children age into adulthood.”

In a first-of-its-kind study, Shattuck looked at rates of service use among young adults with an ASD during their first few years after leaving high school. He found that 39.1 percent of these youths received no speech therapy, mental health, medical diagnostics or case management services

read more … http://news.wustl.edu/news/Pages/21858.aspx

Better Federal Coordination Could Lessen Challenges in the Transition from High School

DisabilityScoop | August 7, 2012

As students with disabilities transition out of high school, a new government report finds the path to independence is overly complicated.

Under the Individuals with Disabilities Education Act, kids with disabilities are eligible for a broad range of services through their local school district. However, once these students complete high school, they must apply and be deemed eligible for services administered by upwards of four federal agencies in order to continue receiving government assistance.

But a report released Tuesday by the Government Accountability Office finds that poor coordination often leaves young adults and their families struggling to find resources.

article: http://www.disabilityscoop.com/2012/08/07/feds-transition-improvement/16195/
see: PDF

Children and Adults With Developmental Disabilities: Services in Washington, Research Evidence

by Stephanie Lee, Marna Miller

The Washington State Institute for Public Policy was directed by the 2008 Washington Legislature to estimate the effectiveness, costs, and benefits of programs for individuals with developmental disabilities (excluding special education).

We reviewed the research literature to find the best available evidence on the economic impacts of services for individuals with developmental disabilities and found that residential services in the community for similar groups of adults with developmental disabilities cost less on average than institutional care. In some research, supported employment increases clients’ wage earnings and taxes paid, with a reduction in public costs. Several programs have demonstrated positive impacts on various life outcomes.

Document ID: (09-10-3901)

Website: http://www.wsipp.wa.gov/pub.asp?docid=09-10-3901
See Full Report

Coming Of Age With Autism

About one in 120 children in the Washington state public school system have an autism spectrum disorder. That’s a 430 percent increase from a decade ago. In the next decade many of those teenagers with autism will become adults. But what they will do as adults is anyone’s guess. Autism is often associated with children, but it’s a lifelong condition.

In Coming Of Age With Autism, we meet young people taking their first steps toward independence, and the family members and professionals who support them.

See: http://kuow.org/topic/coming-age-autism

Concerns Raised Over Independent Living Centers

DisabilityScoop – September 28, 2012

Website: http://www.disabilityscoop.com/2012/09/28/concerns-independent-living/16551/

Oversight of the nation’s Centers for Independent Living is severely lacking, a new audit finds, calling into question how effective the centers are at helping people with disabilities integrate into the community.

In a report from the U.S. Department of Education’s Office of Inspector General, officials found that the agency’s Rehabilitation Services Administration is doing far too little to assess the effectiveness of the independent living centers it oversees across the country.

more

Disability and Work – Research Report

September 2012

A joint publication from the John J. Heldrich Center for Workforce Development and the Kessler Foundation

College Students with Disabilities: What Factors Influence Successful Degree Completion? A Case Study
by Paula Barber

The challenges students with disabilities (SWDs) face on college campuses have been examined widely, but little is known about the experiences of SWDs who have successfully completed college. To level the playing field for people with disabilities by encouraging college education and completion, it is essential to inquire which factors are supporting degree completion.

Much of the information that is known about college success and completion is linked to outcome measures for programs that are linked to specific programmatic funding. This report examines the viewpoints of successful SWD completers and the staff from five colleges and universities in New Jersey without regard to particular program and funding initiatives. This approach yielded a variety of observations about SWDs and promising practices and challenges of the colleges they attended, as well as uncovered areas for further study and development of supports for students, staff, and faculty. Noteworthy was the perspective of both students and college professionals that on-campus services and supports were most critical to college completion.

Full Report: http://www.heldrich.rutgers.edu/sites/default/files/content/College_Students_Disabilities_Report.pdf

 

Fact Sheet on Autism & Employment

Presented at Autism Works
National Conference on Autism and Employment

Date: March 6 & 7, 2012 in St. Louis, MO
Presenter: Dr. Scott Standifer, Disability Policy and Studies, University of Missouri

See: http://www.dps.missouri.edu/Autism/AutismFactSheet2011.pdf

For the First Time, a Census of Autistic Adults

Time | Health & Family – October 3, 2009

Among the many great mysteries of autism is this: Where are all the adults  with the disorder? In California, for instance, about 80% of people identified  as having an autism spectrum disorder (ASD) are 18 or under. Studies by the  Centers for Disease Control and Protection (CDC) indicate that about 1 in 150  children in the U.S. have autism, but despite the fact that autism is by  definition a lifelong condition, the agency doesn’t have any numbers for adults. Neither has anyone else. Until now.

On Sept. 22, England’s National Health Service (NHS) released the first study of autism in the general adult population. The findings confirm  the intuitive assumption: that ASD is just as common in adults as it is in children. Researchers at the University of Leicester, working with the NHS  Information Center found that roughly 1 in 100 adults are on the spectrum — the  same rate found for children in England, Japan, Canada and, for that matter, New  Jersey.

Read more: http://www.time.com/time/health/article/0,8599,1927415,00.html#ixzz2BqJGN8Pl

Lifespan Family Research/ University of Wisconsin

University of Wisconsin Waisman Center

 AAA Adolescents and Adults with Autism- A Study of Family Caregiving

Prior to 2000, there was virtually no systematic research about families of adolescents and adults with an ASD, about the transition from adolescence to adulthood, about the experiences of individuals with an ASD, or the impact on the family. Thus, the primary purpose of our study is to examine the lives of adolescents and adults with an ASD, the impact on the family, and the challenges of coping with a family member with this diagnosis.

In 2000 we began our longitudinal study of over 400 families of people with an autism spectrum disorder who live in Wisconsin or Massachusetts. In addition to examining the bi-directional effects of the symptoms of the individuals with autism and the well-being of their family members, our goals are to describe the quality of life of these families, assess the extent to which their service needs are adequately met, and to examine the plans they made and put into place for the future.

read morehttp://www.waisman.wisc.edu/family/study_autism.html

Little Known About Helping Teens, Adults With Autism

by  for disabilityscoop
August 28, 2012

As a wave of kids with autism enter the transition stage, strikingly little is known about the best interventions for teens and young adults with the disorder, a new analysis finds.

In a review of more than 4,500 studies on autism interventions published between 1980 and 2011, Vanderbilt University researchers found just 32 focused on therapies for people ages 13 to 30. And among the small number of existing studies, many were poorly done, according to the analysis released this week by the U.S. Department of Health and Human Services’ Agency for Healthcare Research and Quality.

morehttp://www.disabilityscoop.com/2012/08/28/little-known-helping-autism/16342/

Prevalence of selected clinical problems in older adults with autism and intellectual disability

adult11513

Journal of Neurodevelopmental Disorder

Adult focused research: Prevalence of selected clinical problems in older adults with autism and intellectual disability

Published 10/25/2013

About 700,000 people with autism are expected to reach age 65 in less than 20 years, but surprisingly little is known about the disorder’s effects on adults. In preparation for the coming surge, some research groups have begun to study autism in people born between the 1950s and the 1990s.

One new study focused on people who are often overlooked in research: 30- to 59-year-old adults who have intellectual disability with or without autism. The study, published 25 September in the Journal of Neurodevelopmental Disorders, found that those who have both autism and intellectual disability act more aggressively and need more medications than those with intellectual disability alone.

Another study, published 3 October in Autism, examined the relationship between loneliness, friendships and well-being in 108 adults with autism aged 18 to 62 years. The study found that people with autism who have a group of good friends are less likely to feel lonely, depressed and anxious than those without many close friends.

The results may not be surprising, but they could help therapists work with people who have autism. A heartening 60 percent of the participants in this survey reported having close friends.

In the first study, researchers examined a 2009 survey from the National Core Indicators, a multi-state program that gathers information about people with developmental disabilities. They looked at 4,551 adults with intellectual disability and 438 who have both autism and intellectual disability.

About 40 percent of those with autism and intellectual disability take medications for behavioral problems, compared with 25 percent of those with just intellectual disability, the survey found.
Predictably, these individuals also cope with severe behavioral problems, such as biting themselves or lashing out and throwing things.

A survey from the following year of 3,963 people with intellectual disability and 298 who have both autism and intellectual disability found the same trend. The autism group in this survey has about twice the number of severe behavioral problems as those with intellectual disability alone.

Interestingly, the severity of intellectual disability also seems to affect behavior, but not in adults who have both disorders.

It appears that an unknown feature of autism, but not of intellectual disability, may add to the behavioral problems in older adults with both conditions, the researchers say. It’s also possible that the caregivers of adults with autism are not well-equipped to handle their charges.

See study @ http://www.jneurodevdisorders.com/content/5/1/27

 

 

Report on State Services to Individuals with Autism Spectrum Disorders (ASD)

Centers for Medicare & Medicaid Services (CMS) ASD Services Project

Read the full report at http://www.cms.gov/apps/files/9-state-report.pdf

Introduction and Background

Over the past 30 years, the prevalence of autism spectrum disorders (ASD) in the United States has increased sharply.1 Today, the Centers for Disease Control and Prevention (CDC) estimates that 1 in 110 children in the US has an ASD.2 While the national economic downturn persists, causing public revenues to decrease, states are challenged to meet the growing demand for publicly financed services to individuals diagnosed with ASD. To make the most effective use of limited resources, federal and state policymakers need empirical data to make informed decisions about which services and support systems are safe and cost-effective in meeting the complex needs of children, adolescents, and adults with ASD. Few initiatives have focused on providing information about the most effective services for individuals with ASD. Those that do, such as the National Standards Project (NSP), have primarily addressed the needs of individuals under age 21 years. Although these efforts provide critical information about effective services and supports for individuals with ASD, gaps exist in information about promising services for transition-age youth and adults. In particular, prior to this study, no efforts at the national level examined ASD services and supports within the context of Medicaid, which is the main public funder of such services outside the education system for affected individuals and their families. Continue Reading →

Sheltered Workshops Offer Little Benefit, Studies Find

Do sheltered workshops enhance employment outcomes for adults with autism spectrum disorder?

Articles: Robert Evert Cimera, Paul Wehman, Michael West, and Sloane Burgess

Sheltered workshops are significantly more costly, yet no more effective than supported, competitive employment at ensuring job prospects for individuals with disabilities, new research suggests.

Two new studies — one focusing on adults with autism and the other looking at individuals with cognitive disabilities — compared the outcomes of those who started out in sheltered employment with those who did not.

see more….http://www.disabilityscoop.com/2012/02/21/sheltered-workshops-benefit/1503

See also: http://aut.sagepub.com/content/16/1/87.abstract?etoc 
Full Text (PDF)
http://aut.sagepub.com/content/16/1/87.full.pdf+html

Siblings Study

How is life different for adults who have siblings with developmental disabilities, many who have assumed — or will assume — primary caregiving responsibilities for their brother or sister with disabilities?

Thanks to the generous support of MassMutual Financial Group, we worked with IPSOS Public Affairs to conduct our Siblings Study.

Easter Seals will use these findings to raise awareness of and advocate for the life-long services and supports families and caregivers need — working to lessen disparities and bridge the gap for people living with developmental disabilities across the country.

read more

Special Report: DSM-5 | SFARI

Special Report: DSM-5 | SFARI

DSM-5: Special Report

DSM-5 Report | SFARIIt’s been nearly 14 years in the making, with heated debate for at least 2, but finally it’s here: The American Psychiatric Association published the DSM-5, the newest revision of the Diagnostic and Statistical Manual of Mental Disorders, on 18 May.

For this special report, we asked several experts to review the DSM-5 criteria for autism — and their reactions are surprisingly positive overall.

Walter Kaufmann, a member of the DSM-5’s Neurodevelopmental Disorders Work Group, notes that the term ‘intellectual disability’ replaces the previous ‘mental retardation,’ a change that is long overdue. The DSM-5 places a greater emphasis on daily life skills over the intelligence quotient in determining intellectual disability.

The new version of the manual also acknowledges for the first time that females with autism may have features that differ from those of males with the disorder, notes William Mandy, a lecturer in clinical psychology at University College London in the U.K.

One of the big changes in the DSM-5 is the decision to have a single diagnosis of autism spectrum disorder, folding in the milder Asperger syndrome and pervasive developmental disorder-not otherwise specified (PDD-NOS). Many people raised concerns that this move would deny people with less severe symptoms a diagnosis of autism and, as a result, access to services even when they need them.

Website:  Read Report  | Introduction to report »

Study: Interventions for Adolescents and Young Adults with Autism Spectrum Disorders

Little Known About Helping Teens, Adults With Autism

DisabilityScoop – August 28, 2012

As a wave of kids with autism enter the transition stage, strikingly little is known about the best interventions for teens and young adults with the disorder, a new analysis finds.

In a review of more than 4,500 studies on autism interventions published between 1980 and 2011, Vanderbilt University researchers found just 32 focused on therapies for people ages 13 to 30. And among the small number of existing studies, many were poorly done, according to the analysis released this week by the U.S. Department of Health and Human Services’ Agency for Healthcare Research and Quality

more

See also:
Effective Health Care Programs – Comparative Effectiveness Review
Interventions for Adolescents and Young Adults with Autism Spectrum Disorders

 

Study: Many Adults With Disabilities Do Nothing All Day

By Michelle Diament for disabilityscoop
February 15, 2012

A significant number of adults with developmental disabilities have no regular, daily activities, a situation that’s symptomatic of larger problems, new research indicates.

The finding comes from a survey of nearly 800 siblings of adults with intellectual and developmental disabilities from across the country. In nearly 13 percent of cases, siblings reported that their brothers and sisters with disabilities were not involved in any sort of routine vocational or educational activities.

more http://www.disabilityscoop.com/2012/02/15/study-adults-do-nothing/14994/

Study: Nearly 1 In 3 With Autism Socially Isolated

disabilityscoop

by  | May 8, 2013

Young adults with autism are often left out socially, with new research finding they are less likely to receive phone calls and invites from friends than even those with other types of developmental disabilities.

In a study looking at the experiences of young people who received special education services, researchers found that those on the spectrum are facing a particularly rocky transition to adulthood socially.

Nearly 40 percent of young adults with autism never saw friends and half were not receiving any phone calls or being invited to activities, according to research published recently in the Journal of Autism and Developmental Disorders. Strikingly, researchers said that 28 percent had no social contact at all.

read more

Tech, Science Fields A Draw For Those With Autism

DisabilityScoop – Nov. 9, 2012

It’s long been thought that people with autism permeate the science and technology fields. Now, new research suggests that there may be some truth to the theory.

In a study of young adults with autism, researchers found that among those with the disorder who attend college, they disproportionately chose majors in the areas of science, technology, engineering and math.

The findings come from a study published this month in the Journal of Autism and Developmental Disorders looking at the experiences of 660 young adults with autism who participated in the federal government’s National Longitudinal Transition Study-2.

read more

 

The Benefits of Disability in the Workplace

Forbes – 5/12/2012
Judy Owens | Contributor


I am a little surprised that I still find myself spending a majority of my time educating people on the problem I set out to solve when I started my company, Opportunity Works. I guess I shouldn’t be surprised, since I’ve only been at it for a number of months, not years (yet). It has occurred to me that shedding some organized, well-documented light on the problem here, might help. So here goes.

Opportunity Works was founded in an attempt to improve employment of people with disabilities. We are a for-profit staffing service company, focusing our recruiting on organizations providing support to people with disabilities. We did this to solve the problem of high unemployment rates of people with disabilities, with marginal improvements since the enactment of the Americans with Disabilities Act in 1990. So, why is it that there has been so little improvement?

read more

Too little too late: A call to end tolerance of abuse and neglect – 2012

Disability Rights Washington and Columbia Legal Services

Overview

Individuals with developmental disabilities face unacceptable risks of repeated physical harm, psychological trauma, sexual assault and even death because the Department of Social and Health Services (DSHS) does not adequately investigate and effectively respond to abuse and neglect allegations in Washington’s Medicaid-funded Supported Living program.

This report documents the observations of Disability Rights Washington, Columbia Legal Services, and two nationally-recognized abuse and neglect response experts.

See: http://www.disabilityrightswa.org/reports#too_little_too_late

Washington State Institute for Public Policy

Report – October 2009

Children and Adults With Developmental Disabilities: Services in Washington, Research Evidence

The Washington State Institute for Public Policy was directed by the 2008 Washington Legislature to estimate the effectiveness, costs, and benefits of programs for individuals with developmental disabilities (excluding special education).

We reviewed the research literature to find the best available evidence on the economic impacts of services for individuals with developmental disabilities and found that residential services in the community for similar groups of adults with developmental disabilities cost less on average than institutional care. In some research, supported employment increases clients’ wage earnings and taxes paid, with a reduction in public costs. Several programs have demonstrated positive impacts on various life outcomes.

Website: http://www.wsipp.wa.gov/pub.asp?docid=09-10-3901