"As I wandered the resource fair with both my kids in tow, it became strikingly clear how limited the options would be for Nicholas post-high school."
"There is a lot of money invested in these kids when they are young but there is significantly less as they get older. You feel as if you're on your own."
These are the real thoughts plaguing parents of high school-age children with autism spectrum disorders. Transitioning from high school to the adult world is a critical time in the lives of all students and their parents, but it is even more daunting for parents of children with ASDs. Sheltered programs are available for adults at the lower end of the spectrum, and college or technical programs for the very high-functioning students. But for those who fall in between, there aren't as many options.
When their children with special needs are young, parents are guided and supported through most of their child's education, often starting when their child is 18 months old. But what happens after high school is over? What supports will be needed or even available? After age 21 do the services stop and, if so, who pays for speech-language and other interventions?
We know the incidence of ASDs is increasing-according to the Centers for Disease Control and Prevention they affect one in 88 children and, as of today, the consensus is there is no cure. Autism is more prevalent than childhood cancer, juvenile diabetes and pediatric AIDS combined. According to Autism Speaks, a national autism advocacy organization, the annual cost to society is $126 billion and has more than tripled since 2006. Schools are being asked to do a better job preparing these students for life after school. ASDs are very costly, and as these children grow older, professionals and parents are becoming compelled to create opportunities and options for them to become independent and able to find employment. I know I am beginning to field more of these questions from concerned families and it's just going to keep coming.
As members of a helping profession, we are trained to identify deficits and then work on remediation. However, at some point in the treatment process, we must adjust and refocus our thinking to identify how these "deficits" can be redefined to become assets in the workplace. For example, a student who is antisocial or a social loner will be less inclined to engage in workplace drama or office politics; the student who has a tolerance for repetitive activities may be a good fit for mundane tasks that others find boring. These traits can be attractive qualities to an employer if expressed as a positive and not a negative. We have to help our clients and their families make this distinction. And to be effective we must become more familiar with the transition process and help identify options for these young adults.
What does the law provide?
First it's helpful to understand what is legally mandated. The Individuals With Disabilities Education Act has required transition services since 1990. However, in 2004, the legal requirements were revised to require an individual transition plan typically be developed beginning at age 16. The ITP is a legitimate part of the individualized education program, which is legally binding. The goal of the transition plan is to facilitate the student's movement from high school to the adult world of work, independent living (if possible) and community integration.
Although IDEA protections end when a child turns 21, Section 504 of the Vocational Rehabilitation Act and the Americans With Disabilities Act continue to provide protections beyond the age of 21. Still, these are not entitlement laws and can vary in interpretation and implementation from state to state. The National Dissemination Center for Children With Disabilities (NICHY) is a national disability-related resource bank of information listed by state to assist families in locating local organizations and agencies. Resources include parent groups and training, as well as research-based information on best educational practices.
What we have tried
Since 1997, our center, the Los Angeles Speech and Language Therapy Center, has offered a speech- and language-based summer camp for children with ASDs and other special needs. Because we provide a variety of services, including early intervention programs, speech-language intervention and social skills training, we have long-term relationships with our clients and have watched them grow up.
Last summer we realized that several of our older students with ASDs were ready for a less structured camp experience. Camp staff and I decided to incorporate them into the camp as speech buddies. A "speech buddy" is the term we have used over the years to describe typical high school students who earn community service hours for their volunteer participation. To become speech buddies, our students with ASDs were required to participate in the same training and weekly debriefings as all of our volunteer staff. The selected students were verbal and 14 to 16 years old. They had received services from our center for an average of eight years and all had participated in at least two of our programs.
Their development during the eight weeks of summer camp was amazing. They seemed to walk with a greater sense of purpose and pride. One young man reflected on his previous noncompliant behaviors and inability to express his emotions, and jokingly described himself as a "changed man." Another remarked, "I know I have autism, but I like being treated the same as everyone else. I just learn differently from other kids." This underscores the importance of inclusion and the value of meaningful peer engagement.
However, despite the growth, there were behaviors-poor self-regulation, inflexibility, overstepping personal boundaries and pragmatic language issues related to workplace jargon or idioms-that could potentially be problematic in the workplace.
For example, one morning I observed a young man standing in the hallway looking up at the clock. When I asked him what he was doing, he responded, "Waiting for my lunch to start at 12 o'clock." It was only 11:50, and I explained that phrase did not mean for him to stop working while "waiting" for 12:00.
In another situation a young man asked a high school volunteer if he could be friends with her on Facebook. Not wanting to appear rude, she agreed. Unfortunately, our student misunderstood her intentions and began to communicate with her too frequently and made her uncomfortable. From his perspective she was his "friend," and he was just being friendly. We revisited a unit from our social skills program that addresses friendship and the difference between a friend, an acquaintance, and a person with whom we may share a common space or interest. We also reiterated the rule that "shared interests do not equal shared personal feelings."
At the end of the eight weeks, we gathered informal feedback from the students and their parents. One young man said that he enjoyed helping and working with children while another, after assisting in housekeeping chores, said he'd like to have his own cleaning business. Another student said he would like to go to UCLA and come back to work with us. For this upcoming summer, we will expand on our model to include more students and will offer an eight-week pre-vocational training program.
This type of experience and feedback can be useful to anxious parents who sometimes find it difficult to envision realistic and attainable outcomes for their children. The experience also benefits the students because it encourages them to think about their post-high school goals and gives them a legitimate voice in the ITP process. By providing them with this summer work experience, we created job and career goals for students with ASDs.
A sea change
Our center isn't the only place creating these experiences. The number of nontraditional structures and creative job opportunities for students with ASDs are increasing. Many are through nonprofit organizations that offer vocational training programs that can lead to employment in fields-such as Exceptional Minds Studio, an animation studio for young adults on the spectrum with a vocational center and summer camp for graphics and animation. Another is Farming Independence, which encourages students to grow and create things on a farm, and then sell them.
Other creative approaches are customized employment, which-as the name implies-tailors a job to suit the strengths and skills of the individual. Still another, "entrepreneurial supports," creates new businesses for individuals around their interests and skill levels. For example, a student who likes to destroy things that do not appear to be perfect can be given entrepreneurial support to go to different offices to shred papers and documents. The documents could be made imperfect by possibly tearing a corner and then given to the worker to shred. A board (often composed of family members, professionals, mentors or members of the business community) would be established to ensure success.
These novel approaches are in addition to more established options such as supported employment, which allows people with ASDs to work in competitive jobs while receiving ongoing support services, and traditional job opportunities or competitive employment options for higher functioning people who, once trained, can work relatively independently.
What is the SLP's role?
Speech-language pathology services are not provided by schools after age 21. Therefore, it is imperative to address speech and language deficits related to long-term productivity, which include verbal and nonverbal communication and social groups. This engagement can begin much earlier than the start of the transition (see "After Commencement, Clarity" in this issue). Incorporating social communication goals that address workplace idioms, theory of mind and executive functioning should be written into the ITP, even for the students who may be doing well in communication and behavior. Sample goals could be written as follows:
1. Given minimal assistance, student will identify the meaning of 10 common workplace idioms (clock in, hit the ground running, keep the ball rolling) in four of five trials.
2. When given specific social situations, student will demonstrate critical thinking skills to generate appropriate solutions with 80 percent accuracy ("You come home from school and discover the door key is not under the mat. What can you do?")
3. When given social scenarios, student will correctly identify the perspective of others in four out of five opportunities when given minimal assistance ("Your friend has a party and no one comes. How might she feel?")
As professionals, we are in a unique position to find ways to leverage our students' natural abilities and fixated interests into career possibilities and encourage families to do the same. Examples of how some private and school-based SLPs are helping their high school students with ASDs are:
- One SLP collaborated with classroom teachers on her student's pre-vocational goals and reinforced them in her treatment groups using role-playing and social stories related to workplace situations.
- Another SLP opened her personal contacts list to help her students secure volunteer opportunities and gain exposure to the world of work. She most recently connected one of her students with her neighborhood dog walker.
- The care provider of a musically talented 21-year-old with an ASD asked an SLP for her thoughts on encouraging him to pursue singing. She thought it was a great idea and supported the possibility. She accompanied the young man as he initially began to sing free of charge at local clubs. He was subsequently "discovered" by a local singing legend and now receives compensation for opening her shows.
The common thread that binds all of these examples is creativity, which is nothing new to our profession. We demonstrate our creativity and commitment to these children daily as we work with them to enhance communication. Now we must use our professional skills and creativity to help them see a way into their future.