Dr. Peter Gerhardt, who has worked in the autism field for 37 years, shared some of his expertise with parents and professionals last week at a one-day conference in Raleigh. His presentation was titled “Transitioning to Competent Adulthood for Individuals with Autism: Implications from Preschool to High School and Beyond.” Dr. Gerhardt is the Executive Director of the Educational Partnership for Instructing Children (EPIC), a school for individuals with autism that uses Applied Behavior Analysis to teach new skills and increase independence. For those who could not attend his presentation, we are sharing some highlights here.
According to a 2015 study titled National Autism Indicators Report: Transition into Young Adulthood, “Young adults with autism have a difficult time following high school for almost any outcome you choose – working, continuing school, living independently, socializing and participating in the community, and staying healthy and safe.”
Dr. Gerhardt’s presentation focused on the ways families and professionals can teach skills and provide supports that increase the likelihood of good outcomes in these areas. His key point was that families should always be looking five years ahead, asking themselves where they would like their loved one to be in five years, and teaching them accordingly. Larger goals can be broken into smaller goals, and they must be specific.
Everyone is capable of living and working in the community with the proper supports, and no one should have to earn the right to be in the community, Dr. Gerhardt said. If an individual is aggressive in a classroom, that is not a reason to keep him from the community; his behavior may be communicating that he does not want to be in the classroom. But Dr. Gerhardt acknowledged that there are barriers associated with certain social norms to overcome:
- High rates of severe challenging behavior can limit community participation.
- Poor hygiene and age-inappropriate clothing restricts social inclusion.
- Poor eating skills restrict inclusion on many levels.
- Inappropriate sexual behavior tends to fall under community zero-tolerance policies
- Not being bowel- or urine-trained presents an overall challenge.
These factors should all be worked on when children are still young, so they are not an issue by the time the student is 12 and families are ready to create a transition plan, Dr. Gerhardt said. Children with autism often lag behind typical children in skills that may be thought of as chores but actually are the beginning of independence from their parents. For example, when children are 4, they can put out napkins for a meal or put laundry in a hamper. At 10, they can make the bed, vacuum, help wash dishes, and take out the trash. Self-care skills, such as brushing their teeth or showering without prompting, also are important to learn at a young age.
Don’t be afraid to let children make mistakes, Dr. Gerhardt said. “We limit people by not thinking they are capable,” he said. “We don’t let them try. The best times of my life were probably the riskiest… Most people on the spectrum don’t get that chance.”
Start with the Outcome
Transition plans should be very specific about the expected outcomes for adulthood, Dr. Gerhardt said, providing an example:
“In 5 years STUDENT X will be 21-years old and preparing for graduation. Ideally, STUDENT X will be working at job where there is music in the background and he will be able to move from activity to activity. When there are clear expectations STUDENT X can be very proficient at work tasks. Currently STUDENT X works in a 1:1 staff to student ratio so that needs to expand to a 3:1 prior to graduation and his engagement needs to increase to 45 minutes of independent work. In terms of his home life, STUDENT X will have a greater repertoire of independent skills including dressing, showering, toileting, laundry, etc. STUDENT X needs to increase his repertoire of preferred activities, beyond I-Pad Apps, and increase his engagement in these at home. In terms of the community he enjoys going out to restaurants and working out at the gym with his father. STUDENT X’s ability to communicate is significantly limited and this needs to be a focus of intervention moving forward. STUDENT X appears to be his happiest when he is eating, with his family, or leafing through books with preferred photos. He will engage in Wii Sports and riding a bike when the opportunity is made available.”
To build a transition statement like the one above, Dr. Gerhardt recommended that both the individual and their family provide input on what type of job might be a good fit as well as where and how the individual will live. With the expected outcomes defined, a plan can be created for getting there.
Once the environments are named, go into them and think about which skills the individual will need to be successful. First identify critical skills, those that enable individuals to independently complete a variety of relevant tasks and engage in desired activities. They are also skills that are used frequently enough to remain in individuals’ repertoire and can be acquired within a reasonable time frame. For example, for some individuals, learning to drive would take too long, but riding a bus is a critical skill that will enable them to get to a job.
Then list skills that reduce the individual’s dependency on others, keeping in mind that not all parts of a task may be necessary. For example, for grocery shopping, going into the store and paying for items are necessary skills. Getting everything on the list actually isn’t; we all forget things, and we have learned to go back in. Learning to go to different stores also isn’t critical, Dr. Gerhardt said, noting that most of us have a habit of going to the same stores all the time.
Teaching Critical Skills
Start by teaching skills where individuals will be using them; most of their lives will not be in a classroom, Dr. Gerhardt said. In the real world, abstract skills can be made concrete. For example, to teach them to shop in a grocery store, take them to an actual grocery store and have them go through the steps. Of course, the challenge with that is that the world doesn’t work the same way every time, so at first, it is helpful to limit the variables. For example, start by going at a time when the store is not as busy, buying the same item each time, and going to the same cashier. Gradually, variables can be added.
Positive reinforcement is the most effective, least well understood, and most poorly implemented behavioral intervention when it comes to developing and maintaining new and useful skills, Dr. Gerhardt said. Children can tell how caregivers feel about them, and are more likely to learn from someone who cares about them and shows them respect. Reinforcements can increase positive behavior, but their value can vary according to time of day, immediacy of access, and the effort of the task, to name a few factors. For example, chips may be a reinforcing treat, but if you give them too many times, they lose their value. A child may like yogurt, but it does not mean he will do a worksheet to get it. Also, like any person, individuals with autism have changing desires.
As you are teaching skills, seek community involvement, Dr. Gerhardt recommended. In the grocery store, find the nicest cashier and talk to them ahead of time about supporting the individual with autism. Teach them how to help by addressing the individual rather than the family member or professional with them. Siblings can also be very helpful, especially on social skills because they know how that age group is interacting these days.
Repetitive practice is a key to learning a new skill, and not just for young children, Dr. Gerhardt said. Going out to eat is a rewarding experience, but it has many skills to learn: entering the restaurant, waiting, ordering, and paying. As in the grocery store, we can limit some variables at first, but it may take weeks of daily practice for all of the parts can be learned. Too often we expect success after just a few attempts that are too spread out.
Also focus on teaching the easiest, most efficient way to accomplish a task. For example, when teaching them to do laundry, use detergent pods and dryer sheets to eliminate measuring. If teaching someone to make their own meals, use the microwave or consider recipe services such as Blue Apron or Hello Fresh. Keep in mind, your goal is to teach them to do the skill without reminders from you. Mastery comes when they have control, whether that is with the support of a calendar or a prompt such as a full laundry basket.
Employment Development and Support
Dr. Gerhardt said that the potential for an individual with autism to be employed is generally limited more by the lack of imagination on our part than an individual’s skill deficit. Most jobs include about 20 tasks. Having the individual do some of those tasks can help others focus on other parts. For people with autism, the job task is usually the easiest part of employment, yet in most cases, that is a focus of their teaching.
Instead, focus on the social and navigation components of job training and support, because those are usually the reasons they lose jobs. Spending time on job matching, or making sure the job is a good fit for the individual, ensures success. Make sure it fits them in terms of challenge, interest, comfort, camaraderie, status, hours, pay, and benefits. Job sampling is also a good idea, and don’t be discouraged if the first job doesn’t work out.
Here are a few of the factors Dr. Gerhardt said should be a focus during job matching:
- What are the individual’s interests, areas of strength, and deficit?
- Is the space accessible and other individuals willing to accommodate
- Is the work challenging work but doable?
- Is the site free of factors that will make the individual anxious such as loud noises, smell, lights, etc.?
- What social skills need to be assessed prior to employment (based upon on-site observation)?
- Is it close to the individual’s home or accessible by reasonable transportation options?
- Will the family maintain high, yet reasonable, expectations for their loved one in terms of employment?
- Is the employer willing to look at the job not as a “token” or favor, but a realistic and needed job, not one made up for the individual?
- Will the employer allow training for co-workers and are the co-workers open to training and supporting the individual if needed?
Individuals with autism are reliable, dedicated, focused, attentive to detail, and hard-working, and promoting their competence over their disability will inspire employers, Dr. Gerhardt said.
Finally, be willing to allow the individual to change jobs – people with autism can become bored just as anyone else might after a long period in the same job.
Aim for Quality of Life
A person’s quality of life is determined by their amount of satisfaction with their physical well-being, emotional well-being, interpersonal relations, social inclusion, personal growth, material well-being, self-determination, and individual rights, Dr. Gerhardt explained. To help improve quality of life for individuals with autism, we must also build their leisure and social skills, which is more complicated than working on task-oriented skills. But as we plan for an individual’s transition, we must remember to consider happiness as an operational outcome, he said.
What are the ultimate goals for the individual? What we do each day affects our happiness the most. Which skills does the individual need to build a fulfilling life? Can the individual use technology to assist with self-management and independence?
Thoughtful consideration of these questions, and always looking five years down the road, will help you build a transition plan for your loved one with autism.
Dr. Gerhardt has supported individuals with autism in educational, employment, residential, and community settings. He is also the author or co-author of many articles and book chapters on the needs of adolescents and adults with autism and has presented nationally and internationally on this topic. Dr. Gerhardt is the founding chair of the Scientific Council for the Organization for Autism Research and sits on numerous professional advisory boards.
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