Aging out: what happens when kids with autism grow up

By Zhixiao Li


The Prevalence of Autism In Massachusetts

  • In 2012, the Centers for Disease Control estimates that 1 in 88 children have an autism spectrum disorder or approximately 1.1 percent of the population. No comparable data are broken out for Massachusetts by the CDC. But, this statistic, if applied to the Massachusetts population of 6,646,144 suggests that around 75,000 people in Massachusetts would have autism.[1]
  • According to US census data, 21.3 percent of the state’s population is under age 18. This suggests that potentially 16,000 Massachusetts children under the age of 18 have autism.[2]
  • During the 2010-2011 school year, a total of 9,886 children aged between 6 and 21 years old “were found eligible for special education due to disability on the autism spectrum. This reflects a 59 percent  increase over the last five years when considering students from ages 3 to 21.[3]

State agencies like Department of Public Health has an Early Intervention Program. Children with autism syndrome disorders are automatically eligible for the program. This specialty service program provides individualized treatments to promote social skills, communication skills and manage behavior etc.. The Department of Developmental Services (DDS) has 23 offices located throughout Massachusetts that are responsible for arranging services for individuals and their families. The Department of Elementary and Secondary Education also serves children on the spectrum for residential services up through age 21. Other state agencies likethe Department of Mental Health, Department of Higher Education etc. also offer a wide range of support and services for people on the autism spectrum.

Although many support programs for individuals on the autism spectrum last through age 21, federal law requires that the transition plan for children with disabilities should start no later than age 16. In 2008 Massachusetts passed a law requiring those efforts to start even earlier, at age 14. When a student with disability turns 14, he/she is expected to develop a Transition Planning Form. This document includes the student’s vision after high school, possible challenges and required skills for the student to be successful either in college or work environment. Each year, the school district would have an individual meeting with the student’s parents or guardians to go through the form and to determine the progress so far and areas of focus in the next year. This progress and assistance will continue for eight years until the student turns to 22.

“So that is one big thing that we have in Massachusetts, a lot of other states don’t have,” said Faith Behum, who is on the Mass Developmental Disabilities Council and a member of the Autism Commission.

Though Massachusetts provides a comprehensive system of specialized services and supports to individuals on the autism spectrum, gaps still exist in adult services. Even if individuals are found eligible for DDS before the age of 18, they have to apply for eligibility before they turn 18. And the DDS eligibility criterion for individuals 18 and over is twofold: the individual must have an IQ of 70 or lower and significant limitations in adaptive functioning. As such, many individuals with autism, especially Asperger’s, will be automatically found ineligible.

According to the Massachusetts Autism Commission Report, which was released in March, 2013:

“In the first quarter of 2012, 25 percent of individuals who applied for adult services through the Department of Developmental Services were found ineligible; 41 percent of the individuals who were found to be ineligible had an autism diagnosis.”[4]

Behum points out that this “IQ cut-off policy” is problematic for individuals with autism, specially Asperger’s, “because a lot of people who have autism have higher IQs but really struggle with some of these basic skills.”

Behum said that she once talked to a mother who has a daughter with Asperger’s. Academically the daughter is successful. Though she has a master’s degree, she struggled to live on her own. “Even to the point where she just couldn’t understand the concept of getting your mail everyday. She just forgot,” Behum related. “And all these bills piled up, she ended up losing health insurance, it turns into a huge mess. And it’s one of those things you and I are like that’s so…you just do it.” She added, “but for some people with autism, things that we seem are so easy and so elementary is really difficult for them sometimes to function in the world that we function in.”

When those individuals who are on the less affected end of the autism spectrum turn 18, they face tough choices during the transition period to eithe head off to a college or find a job. However a lot of state services would go away at this point.

Massachusetts Rehabilitation Commission is a state agency many individuals would go to if they are not found eligible with DDS and want to go into the work environment. MRC helps with young adults with disabilities to find work that includes help them to find a job, locate a job and also give them skills to maintain the job. But the problem is this kind of service is very short term. For people with autism, even if they find a job they still need ongoing supports to be successful in that job.

Some of them may go to college after high school. The Department of Higher Education in Massachusetts conducted a survey on both the college enrollment of students with disabilities and the enrollment of students with Autism Syndrome Disorder. Both have increased since the 2004-2005 academic year. However it is believed that students often do not report their disability and this leads to the assumption that the incidence may be larger than what is currently documented.

Incidence of Autism At MA Public Institutions

The Autism Commission also explains that this figure represents only about 25 percent of the total enrollment of students with autism so it likely understates the true prevalence of autism in the college population. Additionally, private colleges are reporting they are seeing more students with Autism Syndrome Disorders.

1. The Massachusetts Autism Commission Report, March 2013.
2. The Massachusetts Autism Commission Report, March 2013.
3. A study cited by the Commission’s School-age Sub-committee
4. Department of Developmental Services

About Zhixiao Li 4 Articles
Zhixiao Li is a journalist from China who has been living in Boston for almost two years. She enjoys international news and long-form reporting. She can get completely absorbed in video editing. When she isn't glued to her work, she spends time reading books, watching tennis games (Federer and Raonic are my favorites, just saying) and movies, or going for a walk in the city if there are no crazy birds.