Issue Brief

Autism Spectrum Disorder; The

Transition Period
Nicole Hipp
High School to College: Introduction
ASD, also known as Autism Spectrum Disorder, is defined as, “...a broad range of

conditions characterized by challenges with social skills, repetitive behaviors, speech

and nonverbal communication.” 1 The ways in which those with autism learn, think,

and solve

problems vary

from highly

skilled to

severely

challenged.

Only about one

percent of the

world

population has

autism, but the

United States

has seen a five

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

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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

in education, vocational training and employment, social support, housing, and

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

Families and individuals that are affected by Autism Spectrum Disorders

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

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large can work together to make the transition period more effective and smoother for

those affected by Autism Spectrum Disorders.

The Current Situation

Health

Autism is the

fastest growing

developmental

disability.10 Although

this is the case,

autism and ASD

related disabilities

are the most

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,

gastrointestinal and digestive disorders, persistent viral infections, PANDAS, feeding

disorders, anxiety disorder, bipolar disorder, ADHD, Tourette Syndrome, OCD,

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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

As previously stated, those with ASD often have more health-related

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

and further their career.

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

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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

programs in place in attempt to alleviate some of the financial burdens and

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 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.

The Current Policies Enacted

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

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 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

funding to aid the growing population. If the government continues to simply

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.

The increase in homelessness will also raise the national rates of

unemployment.22 Combining the rising rates of unemployment and lack of federal

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

recognize an increase in mental illnesses such as depression and anxiety.24 The

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

rates, and subsequently raises the prevalence of mental health statistics.

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 “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

Alleviating the Situation

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

what’s not, as well as additional research on the adult ASD population.

This type of research is needed to understand how society can assist young

adults through this difficult process. Specific research in different ASD phenotypes,

genders, race/ethnicity, cultural grounds, cognitive abilities, and functioning is

necessary to better understand each circumstance.28 This specific research would also

be beneficial to study social, economic, and institutional support to evaluate different

situations. Examining all situations and circumstances has the potential to increase

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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

unfamiliar topic, research is crucial to build a factual understand to build reputable

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

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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

futures.36 Coordinating strong Individual Educational Programs, commonly referred

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

implement changes to support this population in society.38 Planning starts in the

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.

Planning for the Future

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

independently brings empowerment and it empowers all individuals, and it

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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.

Funding steadier transition processes also promotes less homelessness and

subsequently increases the employment rates. Although ASD may not directly affect

everyone in society, unemployment and poverty does. Helping individuals with ASD

pursue a career helps society at large in the long run.40

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

it has on families associated with Autism Spectrum Disorders. In addition to most of

society being uninformed about the

effects of poor transition planning,

most policy makers are not directly

affected by ASD and therefor may not

be very passionate about change that

requires funding.

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 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

enhancement to the transition period is crucial to any proposed act.

Action and Conclusion

As previously stated, the transition planning should start relatively young.

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

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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

fashion. Long-term implementation planning that includes milestones for specific

agencies and assignments is crucial.46

Neurotypicals take advantage of their given transition programs. Those with

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

health illnesses continue to raise awareness to the evolving situation. Providing a

smoother transition period will impact society at large and ultimately for the better.

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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-

7Yurtoğlu, Nadir, Marji Erickson Warfield, and Susan L. Parish. "Transition to

Adulthood for Individuals with Autism Spectrum Disorder: Current Issues and
Future Perspectives." History Studies International Journal of History10, no. 7
(2018): 241-64. Accessed March 27, 2019. doi:10.9737/hist.2018.658: accessible
at
http://lurie.brandeis.edu/pdfs/Friedman%20Parish%20Ericson%202013%20Tra
nsition%20to%20adulthood%20for%20individuals%20with%20autism.pdf

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.

12 "Facts and Statistics." Autism Society.

13"Autism Fact Sheet." National Autism Association.

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.

16 "Autism Facts and Figures." Autism Speaks.

17Ibid.

18"Facts and Statistics." Autism Society.

19"Autism Facts and Figures." Autism Speaks.

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.

40"Facts and Statistics." Autism Society.

41"Coming of Age: Autism and the Transition to Adulthood." Coming of Age: Autism
and the Transition to Adulthood | Interactive Autism Network.

42Diament, Michelle. "Congress Considers Renewal Of Autism Act." Disability Scoop.

February 11, 2019. Accessed April 02, 2019.
https://www.disabilityscoop.com/2019/02/11/congress-renewal-autism-
act/26019/.

17
43Ibid.

44United States. Government Accountability Office,. Youth and Autism: Report to

Congressional Requesters. Washington, DC: U.S. Accountability Office, 2017. 1-
70: accessible at
https://www.gao.gov/assets/690/684484.pdf

45Ibid.

46Ibid.

18
Photo Citations:

1. Head Gear: https://home.edweb.net/webinar/autism20180927/

2. Autism Related Disorders:

https://www.dreamresearchgroup.com/2014/02/autism-spectrum-disorder.html

3. Autism Prevalence Graph: https://www.autismspeaks.org/science-news/cdc-

increases-estimate-autisms-prevalence-15-percent-1-59-children

4. Health Problems Graph: https://iancommunity.org/ssc/medical-transition-

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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