Autism after 21 Day

Does Autism Magic away in adulthood?

Where are there pediatric Autism Clinics in all hospitals but no Adult Autism Clinics?

Why is there a Services Cliff at Age 21, when any services (even if they are inadequate) received during childhood comes to an abrupt end with no replacement or continuation of supports and services. 

IDEA protection end, with no equivalent replacements and supports

There is URGENT NEED for translatable solutions and supports for the ever increasing numbers of autistic adults. 

End of IDEA protection afforded during the Ed years. The yellow school bus stops coming. 

• Approx 1/3 of autistics who got access to mainstream ed  are put on a diploma track in high school and have the opportunity to make their way to 2/ 4 college, at age 18. They join the swelling ranks of other late-dx autistics and face challenges and barriers that come with adulthood. 
• Almost 2/3 of autistics who are dx in childhood remain in the special education all through their ed years. 
• At age 18, they get another 4 years of what is called Post Secondary Program; located either in segregated facilities/schools, in the school district itself or more recently as programs run on university campuses so they happen in the same space as college-aged peers; though the programming may be different. At the end of the programming, they receive a Certification of Completion.  
• IDEA protections end at this point. This is also the services cliff where all previous services.
• Their options are a series of adult day programs, upto age 50 and then 50+ years. These day programs again have a range of quality - from real job coaching to mere babysitting but there is far less state oversight of quality. There is a shortage of good programs. And as usual, much like special education itself, programs only want the "easy autistics". So where do the rest go? 
• This is a HUGE problem, as families are suddenly handed back their adult child and told to go figure out what to do, from caretaking to daytime programming to housing and staffing, funding to figuring out pretty much everything. Many YA autistics have signifiant medical and other communication needs which can get aggravated with age with no real supports. The onus pretty much falls to the family to figure out what to do. 

• The challenges faced compound for autistics who have higher support needs yet had somehow managed to access mainstream education and even make it to college. Its like straddling two world, as they face barriers in both world - neither of which knows how to support you or wants to include you. Its almost assumed you must be in one of the other other. I have to question this assumption. Instead why can we find solutions?
• Some of these barriers and challenges are unique to each space while others are common across the spectrum. The point being that adulthood in autism is not easy and we need to be thinking of solutions that helps each group and across the board. 

What does research say 

Transition Time

• Lack of planning and coordination: The transition from childhood to adulthood often involves a change in service providers and systems, which can result in a lack of planning and coordination. One study found only 58% of families reported receiving transition planning services (1)
• Limited availability of adult services:  A study found that over 50% of young autistic adults received no services or supports after leaving high school. (2) 
• Disparities in access to services: A study found that young autistic adults from racial and ethnic minority groups had lower rates of access to vocational rehabilitation services compared to their white counterparts. (3)
• Negative impacts on outcomes due to lack of adult services and supports on employment, independence, and quality of life. A study found that young adult autisitcs who received adult services and supports had better outcomes in employment, independent living, and social participation compared to those who did not. (4) 

Co-Occuring Medical Conditions in the Age 18-28 group

• Co-occurring medical conditions: increased risk  (52%) for at least one co-occurring medical conditions such as epilepsy, gastrointestinal issues, and sleep disorders (5)
• Medication use: A study by found that young autistic adults had higher rates of medication use compared to their NT peers; used to manage behavioral or medical health issues (6) 
• However, medication use may be complicated by issues such as difficulties with communication and sensory sensitivities and other medical issues. 
• Sexual and reproductive health: Young autistic adults  may have limited knowledge and support regarding sexual and reproductive health and services. (7)
• Substance use: A study by found that young adults with ASD had higher rates of substance use compared to their neurotypical peers due to difficulties with social communication and peer relationships. (8)

Social Issues

• Lack of social support: Autistics in the 18-28 age group may experience social isolation and loneliness due to difficulties with social communication and interaction. A study found that only 58% of young autistic adults had contact with friends outside of school or work, and only 17% received invitations to social activities. (9)
• Difficulties with employment: Young autistic adults  face challenges in finding and maintaining employment due to difficulties with social skills, sensory issues, and communication difficulties. A study by found that only 58% of young adults with ASD had ever worked for pay outside of the home, and only 12% were employed at the time of the study (10)
• Challenges with healthcare access: Young autistic adults may face challenges in accessing appropriate healthcare due to difficulties with communication and navigating complex healthcare systems. A study  found that young autistic adults had higher rates of unmet healthcare needs compared to their neurotypical peers (11)
• Mental health concerns: Young autistic adults may experience mental health concerns such as depression, anxiety, and suicidal ideation. A study by  found that young adult autistics had higher rates of depression and anxiety compared to their NT peers (12)

References:
(1) Liptak, G. S., et al. (2008). Planning for health care transitions: results from the 2005-2006 National Survey of Children With Special Health Care Needs. Pediatrics, 122(1), e110-e117.
(2) Taylor, J. L., & Seltzer, M. M. (2011). Employment and post-secondary educational activities for young adults with autism spectrum disorders during the transition to adulthood. Journal of Autism and Developmental Disorders, 41(5), 566-574.
(3) Magaña, S., et al. (2014). Racial and ethnic disparities in quality of health care among children with autism and other developmental disabilities. Intellectual and Developmental Disabilities, 52(2), 91-101.
(4) Roux, A. M., et al. (2015). The impact of vocational rehabilitation services on the employment outcomes of adults with autism spectrum disorders. Journal of Autism and Developmental Disorders, 45(8), 2490-2499.

(5) Bitsika, V., et al. (2020). Co-occurring medical conditions in young adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 50(3), 1013-1022.

(6) Ray, T. J., et al. (2020). Patterns and predictors of medication use among young adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 50(2), 471-483.
(7) Eastgate, G., et al. (2018). Young people with autism spectrum disorder and their families' experiences of sexual and reproductive health. Autism, 22(5), 582-591.
(8) Matthews, N. L., et al. (2019). Substance use in young adults with autism spectrum disorder: Impact on mood and social functioning. Autism Research, 12(11), 1676-1688
(9) Shattuck, P. T., et al. (2012). Postsecondary education and employment among youth with an autism spectrum disorder. Pediatrics, 129(6), 1042-1049.
(10) Roux, A. M., et al. (2013). Shattuck Lecture: The state of the science on outcomes for youth with autism spectrum disorder–a review. Journal of Autism and Developmental Disorders, 43(11), 1-17.
(11) Parish, S. L., et al. (2012). Access to care for children with autism in the context of state Medicaid reimbursement. Maternal and Child Health Journal, 16(8), 1636-1644.
(12) Lugnegård, T., et al. (2011). Psychiatric comorbidity in young adults with a clinical diagnosis of Asperger syndrome. Research in Developmental Disabilities, 32(5), 1910-1917.