Autism: Preparing for Aging Out of the System

THE PREVALENCE OF AUTISM spectrum disorder (ASD) has increased exponentially over the last decade. In 2012, the Centers for Disease Control and Prevention’s Autism and Developmental Disabilities Monitoring Network estimated ASD prevalence was 14.6 per 1,000 8-year-old children. Approximately 82 percent of those children had a previously documented ASD diagnosis or education classification given by a community healthcare provider.

The Diagnostic and Statistical Manual of Mental Disorders (DSM-5) defines ASD as a neurodevelopmental disorder characterized by persistent deficits in social communication and interaction and restricted, repetitive patterns of behavior, interests or activities. Some individuals diagnosed with ASD also present with intellectual or language impairment. A diagnosis of ASD can be associated with a known medical or genetic condition or environmental factors. DSM-5 segregates ASD into three levels of severity: level 1 – requiring support, level 2 – requiring substantial support, and level 3 – requiring very substantial support.

While federal and state governments provide support and resources for children with ASD to help them with early and correct diagnoses, healthcare and education, once they turn 21, most states no longer provide these same resources, as they are said to have “aged out” of the system. Unfortunately, this happens at the same time they are transitioning into adulthood, which is challenging enough. Factor in a cognitive disability such as ASD, and it is even more overwhelming. Practitioners try to help, but much more needs to be done.

A survey conducted by Kaiser Permanente titled “A Mixed Methods Study of Physician Knowledge and Experience with Autism in Adults” concluded: “Most adult healthcare providers recognized basic autism characteristics, but reported not having adequate skills and tools to care for this growing population of adult patients. Provider training, resources and improvements in the transition from pediatrics to adult medicine are essential to support the delivery of adequate and effective healthcare to adults with ASD.”

Prior to children turning age 21, pediatricians and family physicians can help guide individuals with ASD or parents of children with ASD in the transition to adulthood. Availability of assistance will depend on where an individual is on the spectrum, the state in which they reside and whether they live in an urban or rural setting.

IEPs and ITPs

Two tools at the federal level, used for students with ASD to ensure they receive the best possible education and experience a smooth transition into adulthood, are an individualized education program (IEP) and individual transition plan (ITP).

An IEP is a document that tailors education to the individual student to provide the maximum benefit. It outlines the child’s special education plan (goals for the school year), services needed to help the child meet those goals and a method for evaluating the student’s progress.

An ITP is a document that prepares students for life after high school. It should be written by the time a student is 16 years old. Each student’s plan is highly individualized and includes planning for further education and/or training, employment, income, living arrangements, leisure time and participating in the community. However, it should be noted that an ITP is only a starting point for individuals with ASD transitioning into adulthood, and it is only useful for individuals diagnosed with ASD when they were school-aged children. Individuals diagnosed with ASD as adults won’t have an ITP.

“In many school systems, ITPs are done extremely well with a thorough evaluation and seamless connections to adult services for such things as vocational rehabilitation and financial and housing assistance,” says Ellen Arnold, EdD, an educational consultant and special educator who develops and teaches short courses and seminars for persons with autism. “However, in other school districts, it has become a meaningless piece of paper. It may provide information, but no one has worked directly with the student to make sure she/he knows the resources available and how to access them.”

In addition, says Dr. Arnold, because an IEP and ITP are void upon completion of high school, if students with ASD want to continue on to postsecondary education, they have to renegotiate a new contract with their current institution, whether it be a university, college, trade school or employer. “In helping persons with ASD transition into adulthood, the most common challenges they face are a loss of automatic supports provided by the schools, concern others have about their social isolation, inadequate preparation for independent living, and employers who don’t understand their unique characteristics and needs, so their job security might be compromised,” adds Dr. Arnold.

With or without an ITP, pediatricians and family physicians can recommend resources to parents of children and adults with ASD to help them transition into adulthood. A myriad of these exist both at the federal and state level, as well as not-for-profit organizations, to assist with postsecondary education, employment, housing and community living, and financial, medical, social and life skills training.

Autism Speaks

Autism Speaks is a U.S. organization focused on improving the transition of individuals with ASD into adulthood, increasing global understanding and acceptance of ASD, acting as a catalyst for research and breakthroughs and ensuring access to reliable information and services throughout a person’s lifespan. Through Autism Speaks’ online toolkits and other resources, the organization reaches more than 50,000 adults each year.

Autism Speaks’ website is a treasure trove. For students still in school, there is a link to an IEP guide created by a team of lawyers at Goodwin Procter LLP to help families understand the IEP process. The 26-page guide contains an IEP timeline and clearly lays out the steps to take throughout the IEP process. The guide also includes tips, resources and answers to frequently asked questions.

Three new tools were recently launched for adults to help their transition into adulthood. Is It Autism and If So, What Next?: A Guide for Adults is a toolkit designed to help adults who suspect they might have ASD, as well as those recently diagnosed with the disorder. A Parent’s Guide to Employment for Adults with Autism Spectrum Disorders includes advice on how parents can help their adult child find and keep employment. And, Community-Based Skills Assessment: Developing a Personalized Transition Plan uses both a criterion-based observation and an interview-based process to measure the individual’s knowledge, skills and behaviors.

Two educational resources were also recently launched. The Brian and Patricia Kelly Postsecondary Scholarship Fund and the Postsecondary Educational Opportunities Guide are designed to help young adults with ASD and their families explore various educational opportunities beyond high school.

In addition, Autism Speaks established two new networking groups on LinkedIn to connect members of the community to specific adult-related issues: Autism Employment Network and Housing and Residential Supports Network.

There are also two extensive resource databases on the organization’s website that cover all areas related to transitioning into adulthood. In the Resource Guide, users can select the state in which they live to view a listing of resources. And, in the Resource Library, users can browse the latest books, magazine articles, education manuals, software and more.

According to Donna Murray, PhD, vice president and head of clinical programs and autism treatment network at Autism Speaks, pediatricians and family physicians can help parents of children with ASD in their journey into adulthood: “I would suggest to start the discussion of transition early — including transition to adult medical providers. Compile a file of medications and past and current issues with a list of supports (strategies) that would make a visit more successful. This will help the individual with ASD [become] more independent during an adult medical visit and provide necessary information (both medical and behavioral) to the adult provider. Also, I would recommend a ‘handoff’ so the current provider is somewhat available for consult.”

Autism Society

The Autism Society is a U.S. grassroots organization created to increase public awareness about the day-to-day issues of individuals across the spectrum, advocate for appropriate services for individuals of every age, and provide the latest information regarding treatment, education, research and advocacy. Catherine Medovich, an information and referral specialist at Autism Society, says the organization helps parents build a network of support so they do not have to reinvent the wheel when the time comes to transition their child into adulthood.

“Although some people with ASD who are transitioning into adulthood will have support from their parents and their ITP,” says Medovich, “there are others we often refer to as the ‘square-one phone calls.’ These are typically phone calls from parents who did not receive a diagnosis for their child when they were young and, therefore, their child did not receive any support or resources throughout their school years. These parents or caregivers have to immediately become familiar with the appropriate agencies, new terminology and who they can call to obtain necessary services for their loved one with ASD.”

Medovich says she also receives phone calls from adults who have “inherited” their adult sibling with ASD after one or both parents have died or moved into a care facility, leaving them responsible for their sibling’s day-to-day care. “There is lots of information on autism, but you have to know where to look for it. At the Autism Society, we like to empower people with the tools they need to navigate the vast amount of information available,” says Medovich. “Support and resources can vary greatly state by state, so it is important to research what your state offers before looking outside your state for help.”

Individuals can locate resources for adults with ASD by visiting the Autism Society free online referral database at www.autismsource.org. On the homepage, click on “click here to search.” Individuals can search within categories that are of interest such as “Community Supports for Adults.” The database produces results based on ZIP code, city, county or category. Searches can also be conducted with a keyword or phrase such as “therapeutic” or “day services.” In addition, the database can locate the nearest Autism Society affiliate in a region, many of which have initiatives that specifically focus on adult issues and may offer support groups for adults with autism.

Medovich, the mother of a 25-year-old son who has ASD, says her son moved out of their family home two years ago, into a place of his own and is currently employed. “Even though my son has an education, his own place and a job, there is always something to deal with when you are a parent of a child who has ASD,” she says. “Right now, I’m dealing with some employment issues my son is experiencing. He is also dealing with social isolation, and he would really like to make some friends.”

Supplemental Security Income (SSI)

SSI is a federal income supplement program designed to help persons with disabilities meet their basic needs for food, clothing and shelter. SSI payments are made monthly to disabled people who have low income and few resources. Whether a person qualifies for SSI benefits is determined by the amount of income earned, and qualifying amounts differ from state to state. The basic SSI amount is the same nationwide, which is $733 per individual. However, many states provide additional money.

SSI benefits are also available to persons with ASD who live in certain types of institutions. And, if a person is approved for SSI benefits, they might also be able to receive assistance from Medicaid, the Supplemental Nutrition Assistance Program and other social services.

Medicaid and Medicaid

Waivers Medicaid, a joint state and federal entitlement program, provides medical assistance to persons with low incomes. If a person receives benefits under the SSI program and they are eligible for Medicaid, a state might pay Medicaid premiums and, in some cases, other Medicaid expenses such as deductibles and coinsurance.

Medicaid waivers, which are not available in all states and usually have lengthy waiting lists, are provided to persons with ASD. The funds can be used for residential placement, day programs, case management, community-based instruction, and respite and medication management.

To determine if Medicaid waivers are available, go to www.medicaidwaiver.org and click on the name of the state where the person resides. The link will provide a list of available programs and services to assist people with disabilities in that state.

Transition Roadmaps and Scaffolding According to Dr. Arnold, transitioning into adulthood can be frustrating and create a lot of anxiety for individuals with ASD. To lessen the stress, creating a transition roadmap can help individuals with ASD learn coping skills so they can adapt to new situations and opportunities with ease. “A transition roadmap is a visually decorated map to help individuals with ASD plan ahead for important transitions such as going to a new school, starting a new job or moving into a new home,” explains Dr. Arnold. “It will assist them in plotting the course from where they are now to where they are going, giving them an idea of what to expect along the way.”

A technique to help with completing tasks on the transition roadmap is scaffolding. Scaffolding, says Dr. Arnold, is breaking a task into chunks that can be modeled and rehearsed. This involves lots of practice, performing tasks with changed variables, relying on peers for help and, ultimately, performing tasks alone. The more tasks that are scaffolded ahead of time, the smoother the transition will be.

Because transitions are very hard, Dr. Arnold suggests not making too many changes at once. Think small baby steps, she says. Analyze all parts of their life that will be different, and then have the individuals experience each part separately until mastered. For example, teach individuals with ASD how to use a public laundry when they are still living at home so they will know how to do laundry when they are in college or living on their own. Teach them how to handle money at a very young age so by the time they have a job and have their own credit card, they already know how to manage bank accounts and how to budget.

New locations for work or school should be visited several times so they become familiar with landmarks, maps and the environs long before they start. Take pictures of places and people so they can be reviewed over and over again until they become familiar. A good practice is for individuals to write a social story for each location or event. “Social stories are short vignettes that we read and write with individuals with ASD to help them understand what to expect, what specifically to say, how to act and how to react in a variety of conversational or social settings,” explains Dr. Arnold.

An Increasing Need

As more and more children are diagnosed with ASD, many as young as 2 years old, new information is becoming available about the disorder. However, the need for additional data that address ASD challenges has become increasingly important, especially resources that help individuals with ASD transition into adulthood to become independent and pursue their dreams.