Professional Documents
Culture Documents
Issue Brief Good
Issue Brief Good
and nonverbal communication.” 1 The ways in which those with autism learn, think,
and solve
problems vary
from highly
skilled to
severely
challenged.
percent of the
world
population has
United States
percent increase in prevalence. Now, about one in every fifty-nine births is affected by
autism.2 Having autism makes obtaining a steady job more difficult in society and
also creates challenges in families. Around thirty-five percent of young adults with
autism have not had a job or received any postgraduate education after leaving high
school.3 Only 16.8 percent of the population with disabilities have had the ability to
obtain employment.4 Those that are able to transition from high school to college with
2
a job in the end are faced with real world problems such as attempting to negotiate
their way into college, work, community participation, and living idependently.5
Transition aid is also not always readily available to those who are seeking the help.
In grade schools, it costs more than eight thousand extra dollars per year to educate a
student with autism.6 In conjunction with more expensive funding, research outcomes
healthcare proves that the current situation is not working the way it currently is
implemented.7 This lack of transitional support also makes this period of time
between adolescents and young adults in the real world harder for those individuals
living in lower income households and makes attending post-secondary schools and
transition programs less likely.8 That said, those that are financially more stable also
have a difficult time accessing resources due to a build-up of need. Many states have
waiting lists for adult services, especially housing. For example, in 2013, Connecticut
had over fifteen thousand people with intellectual disabilities who were eligible for
services, but limited funding meant that only a few were able to be assisted.9
deserve the help and assistance to which the average, everyday person has access. As
the population increases, so does the prevalence of ASD. The normalization of these
disorders in society will make asking for help and assistance much easier. This issue
brief specifically targets the current situation of the transition period for those with
Autism and the struggles currently imposed on these families and individuals.
Furthermore, this brief discusses the ways in which policy makers and society at
3
large can work together to make the transition period more effective and smoother for
Health
Autism is the
fastest growing
developmental
disability.10 Although
related disabilities
underfunded by the
government.12
Statistically, the true prevalence has increased between six and fifteen percent each
year between 2002 and 2010.11 Individuals living with ASD often live with other
conditions associated with autism. Some common conditions associated with ASD
include, but are not limited to, Fragile X, allergies, asthma, epilepsy, bowel disease,
4
sensory integration dysfunction, sleeping disorders, immune disorders, autoimmune
disorders, and neuroinflammation.12 Not only do most people with ASD have a
multitude of health-related complications, but a 2008 Danish Study found that the
mortality rate among those with autism was nearly twice that of the general
population.13
Financial Situation
complications than the average person. With those complications comes financial
barriers and costs. With increased financial burdens, these families often fall below
the poverty line. The variance in costs is dependent on the intellectual disability. As a
nation, autism services cost U.S. citizens $236-262 billion dollars annually on
average.14 These services are often times covered by federal taxes. In addition to
services, to educating those with autism it costs an average of $8,600 more per year
for school districts.15 Additionally, the expensive education costs lead to reduced
funding and makes it more difficult for those with autism to continue their education
Of the nearly eighteen thousand people with autism who used the available
state-funded vocational rehabilitation programs in 2014, only about sixty percent left
the program with a job.16 Of those sixty percent, only eighty percent worked part-time
at a median weekly rate of one hundred and sixty dollars, which puts them well below
5
the poverty line.17 These cost impairments have a slim chance of becoming obsolete,
but they are able to be minimized. The costs of lifelong care can be reduced by two-
thirds with early diagnosis and intervention.18 In 2015, the cost of caring for
Americans with autism had reached two hundred and sixty eight billion dollars and is
expected to rise to four hundred and sixty-one billion dollars by 2025 without more
effective interventions and support across the life span.19 If new policy acts are not
passed relatively soon, the cost of caring will continue to rise at alarming rates.
Policy Now
Looking at the current problems, it must be noted that there are current
6
implications that families and individuals affected with autism face. There is
currently a laundry list of policies in place, but only five of the twenty-two available
are focused specifically on the transition of youth with ASD to adulthood.20 Below is a
graph of the five currently enacted and how they are related to the transition period
processes.
U.S. Department of Heath and Human Services (HHS)/Office of the Autism Coordinator, Report to Congress on Youth with ASD
Assistant Secretary for Health (Science and Medicine) Transitioning to Adulthood
HHS/Health Resources and Services Administration (HRSA) Leadership Education in Neurodevelopmental and Other Related
Disabilities (LEND), Leadership Education in Developmental-Behavioral
Pediatrics (DBP), Interdisciplinary Technical Assistance Center (ITAC),
Autism Research Networks Program, R40 Autism Research Program,
National Survey of Children with Special Health Care Needs (NS-
CSHCN), National Survey of Children’s Health (NSCH), State Systems
Grants, State Public Health Autism Resource Center (SPHARC), Title V
Maternal and Child Health (MCH) Services Block Grant Program, Got
Transition/Center for Health Care Transition Improvement, and there is
one research network and three investigator-oriented research projects
HHS/National Institutes of Health (NIH) NIMH Services Research for Autism Spectrum Disorder across the
Lifespan (ServASD) Initiative, Grants funded through NIMH and NICHD
extramural research programs, Project SEARCH, and there are eleven
research projects and four of them are investigator initiated
ED/Institute of Educational Sciences (IES) Special Education Research Grants/Transition Outcomes for Secondary
Students with Disabilities, Special Education Studies and Evaluations,
National Longitudinal Transition Study 2012, Middle Grades
Longitudinal Study, and there is one research and developmental center
and one investigator-initiated research project
U.S. Department of Defense (DOD) Autism Research Program (ARP) within the Congressionally Directed
Medical Research Programs (CDMRP), There is one investigator-initiated
project
7
The policies currently in place are insufficient for the growing population and
demand for effective transition programs. Only five of the twenty-two available
programs are currently being funded as of today. This raises the question of whether
or not additional funding would be suitable to satisfy the demand for transitional
maintain the current supports and funding, society can expect to see increases in
homelessness due to lack of available education.21 The current policies are primarily
focused on the medical associations and educational funding within primary and
grade school classrooms. These five programs neglect the transitional period after
primary education and into the real world with jobs, housing, and independence.
funding for adequate transition program also indicates that children with autism will
live with their guardians longer than the average young adult and impose a
‘burden.’23 As previously stated, those with ASD are also more prone to mental
illnesses and combined with this ‘burdening’ affect, the United States would also
negligence from policy makers does not just hurt the population with ASD. Ignoring
the inevitable creates a snowball effect starting with the underfunding of medical
expenses and education, which then leads to increased poverty and unemployment
8
“We still have much work to do,” U.S.
Congressman Mike Doyle, 18th District of Pennsylvania for The
Coalition for Autism Research and Education (CARE)25
Research
One of the more obvious solutions to help alleviate the problem of transition
process is to conduct more research. By researching the current situation and finding
the key aspects that are beneficial in policy now and those that need more attention,
policy makers will be able to make revisions. Unfortunately, current available data is
limited to just children; adults with ASD are not included in the population-based
surveys used by the federal government for funding and research.26 Society and policy
makers are only beginning to understand what distinguishes smooth pathways and
struggling transition periods.27 We must conduct research to see what’s working and
This type of research is needed to understand how society can assist young
adults through this difficult process. Specific research in different ASD phenotypes,
necessary to better understand each circumstance.28 This specific research would also
situations. Examining all situations and circumstances has the potential to increase
9
independence, decrease the reliance on families, and foster independence.29
Increasing research is important because less than two percent of private and federal
autism funding is purposefully being devoted to the transition issue.30 With any
programs that are destined to benefit society at large. Conducting research to test the
efficacy of new and existing service and support models that are designed to improve
the outcomes for youth and young adults with ASD, as well as their guardians.31
Transition Planning
Dr. Ernst VanBergejik, Ph.D suggests that the transition planning for those
with ASD begin as early as age six.32 The planning process begins much earlier for
children with ASD because daily skills often take much longer to accomplish in
comparison to someone that does not have ASD. Accomplishing the smaller tasks
makes handling the more complex skills slightly easier. Effective transition planning
provides the opportunity for young-adults to learn about themselves and plan for
their future after grade schools.33 Starting in the homes, parents and or guardians
play a crucial part in the transition process. The need for programs that help bridge
the gap between childhood and adult systems are needed to transform systems into
flexible and individualized services as needed because not every child is in the same
position.34 Each home life is different and their program should be individual to
10
reflect that. These transition programs should be designed for broad access, but with
individual flexibility.35
After educating the family on the proper ways to provide a smooth and effective
transition, the faculty at schools must be properly informed on ways to ensure the
smoothest transition. Educating the staff before you educate the students ensures
that the children are receiving the best and most effective paths to better their
to as IEPs, and adult services would provide support from all different systems and
create a bridge between childhood and adult services and supports.37 Service systems
within the communities should be able to assess and monitor the experiences, needs,
and life goals of transitioning youth with ASD in order to identity, plan, and
family setting, is supported in the school setting, and implemented between both. To
assure this type of capacity, specific training, certification, and licensing programs are
needed.
Taking the necessary steps to help reduce the transition problems faced by
those with ASD will ensure peace between many institutions. In the home setting,
families would experience help, security, and freedom. “I believe that living
11
empowers those on the spectrum,” Matheson said.39 Adult services that offer
housing incorporates individuals with ASD in society, but also makes them feel
secure with personalized assistance. Parents are able to feel safe knowing that their
loved ones are taken care of and pursuing a life, while they are pursuing their own.
subsequently increases the employment rates. Although ASD may not directly affect
everyone in society, unemployment and poverty does. Helping individuals with ASD
Moral Issues
Unfortunately, since only one percent of the population is recognized with ASD,
society is uniformed and therefor shows little sympathy.41 It is basic human nature
that if it does not affect you personally, it is hard to have sympathy or show support
to a certain topic. Neurotypical people are also very uneducated about the effects that
requires funding.
12
Most of the improvements needed for a smoother transition period requires
federal funding. Like any governmental change, the positives and negatives are
weighed. Since autism only effects a small population in society, the struggles
associated with this topic are often ignored and sometimes defunded. The transition
period also varies from family to family. Some may require more assistance than
others making involvement with programs unreliable. The main moral argument is
founded on the idea that is does not affect enough of society to increase taxes and
spend billions of dollars on funding and research. We should care about everybody in
our country and not just society at large. Society is growing which means the ASD
population is growing as well. If policy makers begin making a change now, it will
smooth the process later. Later this year, September thirtieth to be exact, the Autism
CARES Act is expiring.42 The new proposal includes an extra three hundred and
sixty-eight million dollars, in addition to the current two hundred and sixty million, to
research earlier interventions in order to prepare children and their families for the
transition out of critical assistance programs and into adulthood.43 This specific
Lowering the ages for transition planning to begin ensures that parents/guardians
are ready for life after high school.44 School districts should begin providing transition
13
services to students with disabilities around age fourteen.45 If children are fortunate
to be in a prepared family, it is highly likely that parents will begin before age
fourteen. If children reside in a less fortunate family, age fourteen is appropriate for
them to begin with assistance from their teachers. Increasing teaching requirements
for teachers that provide transition planning and educating the teachers before the
parents, guardians, and children ensures that the correct information is relayed and
to the best of their ability. Lastly, developing key milestones for regulation purposes
and research makes sure that policy makers are being held accountable in a timely
Autism Spectrum Disorders deserve the chance to live up to their potential. With the
increasing population of those affected by ASD, the current transition programs must
be revised in order to keep up with the growth. Although these problems do not
directly affect the everyday population, the growing unemployment rates and mental
smoother transition period will impact society at large and ultimately for the better.
14
References
1"What Is Autism?" Autism Speaks. Accessed March 27, 2019.
https://www.autismspeaks.org/what-autism.
2"Autism Facts and Figures." Autism Speaks. Accessed March 27, 2019.
https://www.autismspeaks.org/autism-facts-and-figures.
3Ibid.
4"Facts and Statistics." Autism Society. Accessed March 27, 2019. http://www.autism-
society.org/what-is/facts-and-statistics/.
5Hendricks, Dawn R., and Paul Wehman. "Transition From School to Adulthood for
Youth With Autism Spectrum Disorders." Focus on Autism and Other
Developmental Disabilities24, no. 2 (2009): 77-88. Accessed March 27, 2019.
doi:10.1177/1088357608329827: accessible at
https://journals.sagepub.com/doi/pdf/10.1177/1088357608329827
6Lloyd, O. Li., and R. Barclay. "Hypothesis: A Short Latent Period for Respiratory
Cancer in a “susceptible” Population." CrossRef Listing of Deleted DOIs1, no. 4
(1979): 327. Accessed March 27, 2019. doi:10.1007/bf02549249: accessible at
https://pediatrics.aappublications.org/content/133/3/e520.short?sso=1&sso_redi
rect_count=1&nfstatus=401&nftoken=00000000-0000-0000-0000-
8Ibid.
9"Coming of Age: Autism and the Transition to Adulthood." Coming of Age: Autism
and the Transition to Adulthood | Interactive Autism Network. April 08, 2014.
Accessed March 28, 2019. https://iancommunity.org/ssc/autism-transition-to-
adulthood.
10 Autism Fact Sheet." National Autism Association. Accessed March 28, 2019.
https://nationalautismassociation.org/resources/autism-fact-sheet/.
11Ibid.
15
14Ibid.
15Ostrow, Nicole. "Autism Costs More Than $2 Million Over Patient’s Life."
Bloomberg.com. June 10, 2014. Accessed March 28, 2019.
https://www.bloomberg.com/news/articles/2014-06-09/autism-costs-more-than-
2-million-over-patient-s-life.
17Ibid.
20Young Adults and Transitioning Youth with Autism Spectrum Disorder. Report.
National Autism Coordinator, Department of Health and Human Services.
Washington D.C.: National Autism Coordinator of the U.S. Department of
Health and Human Services, 2014. 1-88. Accessed March 27, 2019. National
Autism Coordinator of the U.S. Department of Health and Human Services:
accessible at https://www.hhs.gov/sites/default/files/2017AutismReport.pdf
21"Coming of Age: Autism and the Transition to Adulthood." Coming of Age: Autism
and the Transition to Adulthood | Interactive Autism Network.
22Dodson, Braley, and Daily Herald. "Autism after 21: Adults Struggle to Find
Employment, Housing." Daily Herald. April 21, 2017. Accessed March 28, 2019.
https://www.heraldextra.com/news/local/autism-after-adults-struggle-to-find-
employment-housing/article_52a3886d-e188-5ad1-bc2f-41218979b28a.html.
23 Taylor, Julie Lounds, PH. D. Transition to Adulthood for Youth with Autism: A
Research Report.Report. Vanderbilt Kennedy Center Investigator, Vanderbilt
University. April 2018. Accessed April 28, 2019: accessible at
https://vkc.mc.vanderbilt.edu/assets/files/resources/taylorreport.pdf.
24Ibid.
25 Doyle, Mike. "Autism Caucus." Congressman Mike Doyle. January 11, 2019.
Accessed April 02, 2019. https://doyle.house.gov/issue/autism-caucus
26Young Adults and Transitioning Youth with Autism Spectrum Disorder. Report.
National Autism Coordinator, Department of Health and Human Services.
16
27Taylor, Julie Lounds, PH. D. Transition to Adulthood for Youth with Autism: A
Research Report.
28Young Adults and Transitioning Youth with Autism Spectrum Disorder. Report.
National Autism Coordinator, Department of Health and Human Services.
29Ibid.
30Ibid.
31Ibid.
32 "Coming of Age: Autism and the Transition to Adulthood." Coming of Age: Autism
and the Transition to Adulthood | Interactive Autism Network.
33Hendricks, Dawn R., and Paul Wehman. "Transition From School to Adulthood for
Youth With Autism Spectrum Disorders."
34Young Adults and Transitioning Youth with Autism Spectrum Disorder. Report.
National Autism Coordinator, Department of Health and Human Services.
35Ibid.
36Hendricks, Dawn R., and Paul Wehman. "Transition From School to Adulthood for
Youth With Autism Spectrum Disorders."
37Young Adults and Transitioning Youth with Autism Spectrum Disorder. Report.
National Autism Coordinator, Department of Health and Human Services.
38Ibid.
39Dodson, Braley, and Daily Herald. "Autism after 21: Adults Struggle to Find
Employment, Housing."
40Ibid.
41"Coming of Age: Autism and the Transition to Adulthood." Coming of Age: Autism
and the Transition to Adulthood | Interactive Autism Network.
17
43Ibid.
45Ibid.
46Ibid.
18
Photo Citations:
https://www.dreamresearchgroup.com/2014/02/autism-spectrum-disorder.html
increases-estimate-autisms-prevalence-15-percent-1-59-children
youth-autism
5. Yellow Table: I made the graph but using facts from this website:
https://www.hhs.gov/sites/default/files/2017AutismReport.pdf
6. Child: https://www.cdc.gov/ncbddd/autism/data.html
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