First published September 6, 2011.
As a parent, you are a legal guardian. You’re responsible for your child’s welfare, education and health. As the parent of a child with autism, of course, you’re also responsible for therapies, IEP’s and much more. With all those responsibilities come rights. You have the right to choose your child’s medical care, educational setting and therapies. You decide how much to spend on what, where your child will live, what he will eat. As soon as your child turns 18 years old, however--all things being equal--all that will change. In the United States, anyone who is 18 or over is considered an adult, with all the rights and responsibilities attached to adulthood.
Rights and Responsibilities
What are the implications of becoming an adult? Here are just a few:
Many adults on the autism spectrum face challenges with taking on the responsibilities of adult life. They may not be able to adequately understand money, sex, or healthcare issues or they may not have the emotional ability to handle such issues under stress. Because autism is such a wide-ranging disorder, it may also be the case that your adult child can, for example, handle money on a day-by-day basis, but be unable to grasp the concept of taxes, investments or insurance plans. Or it may be that your adult child can manage her own routine doctor visits, but panics when faced with the bright lights and unusual smells and sounds of a hospital. There are a number of situations in which adults are either developmentally unable to act accordingly, or when certain specific types of tasks are beyond their abilities.
Full Legal Guardianship
To help parents and/or caregivers to manage such situations, the federal government and individual states offer a variety of caretaker options which can be tailored to individual abilities and needs. By far the most intensive option for managing the affairs of an adult with special needs is continued full, Legal Guardianship. At first glance, it may seem like a good idea to simply continue as your child’s legal guardian, even after he turns 18. After all, you’ve done a good job so far, so why change a situation that works? In some cases, particularly when there is a severe disability, this option may be a particularly good one. But what if your child's autism is less profound? Depending on your state, full Legal Guardianship may strip your child of many legal rights, including the right to marry without consent, vote, or even choose his or her own home. If you believe your child with autism can and should have at least some of the rights and responsibilities of an adult, then this type of arrangement may not be appropriate.
Another important point to consider is that Legal Guardianship does not give you the legal right to determine your child’s choice of friends or sexual partners. If you are considering guardianship because you feel your child makes poor decisions in this regard, you may want to carefully consider your plans. Even if you are granted some form of guardianship (and you may not be if your child is not intellectually disabled), guardianship doesn’t give you any more authority than you have today. In addition, should you feel that your child's level of disability makes full Legal Guardianship a good choice, you must decide if you will continue in that capacity. If you determine that you wish to continue as your adult child’s guardian, then you can take action prior to your child’s 18th birthday to ensure that there is no gap in guardianship. This may be an important step, since an emergency situation could arise in which your adult child would need to sign a medical waiver or give permission for a medical intervention. Without legal guardianship, the process could slow down, making it very difficult to provide quick, appropriate medical care.
Other Guardianship Options
There are essentially three forms of guardianship: Guardianship of the Person, Guardianship of the Estate/Property, or Guardian of both the Person and the Estate. Of these, full Legal Guardianship covering both property and person is the most intensive. It’s important to note that there can also be two guardians assigned--one as guardian of the person, and the other as guardian of the estate.
Guardians of the Person are responsible for:
Guardians of the Estate are essentially responsible for all financial transactions and decisions, including:
Regardless of the type of guardianship you seek, you or your child’s assigned guardian may be responsible for reporting to the court each year. Guardianship is not a permanent status, and it is possible to either give up or lose the right to be a guardian of an adult.
Choosing the Guardian
You will also want to decide whether you, personally, want to be your adult child’s guardian. It is possible to assign a third party or hire a professional guardian to manage your child’s daily life and financial affairs. Even if you decide to become your child’s guardian, the question will arise of who will take over for you upon your death. Ideally, that person will have agreed to the role ahead of time, and you’ll have put that decision into your will. You may wish to consider hiring a lawyer or a guardianship professional to help you through this process.
Establishing Legal Guardianship
Just as each state has its own regulations regarding guardianship, each one has its own procedures for pursuing this arrangement. The process will involve steps that you will take and others taken by the legal system:
Alternatives to Guardianship
A great many adults with autism are perfectly capable of handling many aspects of their lives, and many are also capable of seeing clearly where they need extra help. If your adult child fits this description, there are many options available to you and your child to provide support without obtianing guardianship:
Making the Decision
How critical is it to establish guardianship for your adult child with autism? The answer to that question will vary for every reader. While you may not feel that full guardianship is right for your child, you may find that other options are in your family's best interest. The important thing is to access information, begin to discuss and consider choices, and to move toward accurate assessments of your child's strengths and challenges regarding living independently. Before your child blows out those 18 candles, it is wise to have considered readiness for everything that comes with stepping into adulthood.
Parents can support their teenager on the spectrum in many ways, but one that often gets overlooked is the support provided by helping school staff see your young adult as an individual. Neurotypical adults—whether teachers, administrators, or coaches—may at most have only a superficial understanding of the autism spectrum. In addition, the autism spectrum is highly diverse in how different young people display their disability. A positive alternative is helping school staff to truly understand your teenager and his or his unique qualities and challenges.
My years of experience with students with various learning and mental health challenges have shown me the breadth of characteristics which appear in students on the spectrum. It is reflective of the great diversity among human beings, despite our constant efforts to easily label and categorize people. At the last school I headed, one young man struggled with social relationships with his peers, but grasped humor and sarcasm and communicated very well with many adults in his world. That teenager had a wide range of interests. Another student was highly verbal, but his verbosity reflected his tendency to obsess about two hobbies--computers and video games. His challenges with logical thinking included difficulty in consistently recognizing the effect of his actions on other students. A third student caught my attention at his enrollment meeting by correcting my pronunciation and grammar several times. As a middle school student, he was only beginning to struggle with the expanded demands of peer relationships. The result of the differences in these students is that my teachers had to be selective about which techniques to use to enhance these students’ social skills. We could not use a cookie-cutter approach.
When educators start with a narrow template of what constitutes autism, the outcome is ineffective teaching. A better approach happens when teachers start with getting to know individual students and use the autism diagnosis as a resource for providing the best support possible. Focusing on the category and not the individual often leads to teachers simply being frustrated that the student isn’t behaving in a predictable manner.
As a parent, you can actively cultivate relationships with teachers and administrators to help them view your child as an individual. One action parents can take is to provide all teachers with information about the child’s likes, dislikes, motivators, and behavioral triggers. Effective teachers follow the best practice of building a positive rapport with their students, and personal information—such as a student’s love of trains or the video game “Halo”—helps facilitate that rapport. The teacher or administrator’s response to that information also assists you in determining how willing they are to work as a team with you. For example, during enrollment meetings, I took notes on students’ likes, dislikes and behavioral triggers and disseminated those to every teacher in the school. I also set an expectation that teachers use that information. This practice made my teachers more effective. Our goal was not to teach autistic students; our goal and our responsibility were to teach individual students.
Of course, the trick is to do this in a way that helps you gain the teacher’s cooperation. This process is often an exercise in identifying the most outstanding teachers in the school building. In general, the more a teacher exhibits an ability to listen to you and your concerns, the more likely he or she will also demonstrate the same behavior with your teenager. You can look at this experience as an opportunity to gain great skills in reading people and understanding their motivations—skills you are also likely to want your young adult to develop.
Using stories will also be particularly helpful as you speak with teachers about your student’s needs. Many teachers best remember specific qualities about our students when a concrete example in the form of a story reinforces the information parents are providing. This approach likely gives us a visual image to return to when we next encounter that student and need to respond differently than we habitually do. It’s even better to learn enough about an educator to make the story meaningful to them in some way. For example, if you as a parent know that your son, James, has the same name as his social studies teacher’s son, you have a way of engaging with that teacher on a personal basis, which may be far more effective than engaging in the more formal teacher and parent stereotypes. Again, you will be bringing forth your student’s humanity and linking it to the teacher’s experience.
Remember the Big Picture
When it comes to our kids, it’s easy to get tunnel vision. We love them deeply and know that they need our support and advocacy. The challenge is that our tenacity on their behalf can come across to educators as pushy and even interfering. Of course on one level, that reaction is irrelevant; we still have to do what we believe is best for our teenagers. It can be helpful, though, to view any troubling situation—such as a conflict with a teacher or another student—from a broader perspective. By taking a short time to view a situation from other vantage points—the student’s, the teacher’s, the principal’s, and so on—we are better able to help bring about a solution. In addition, looking at the big picture helps us to not take other people’s reactions personally, which then allows us to listen, gather information, and strategize more effectively. For example, an unresponsive teacher may be a genuine problem and your student may need to be in a different class. On the other hand, if a parent can patiently and nicely reiterate her concerns again the following week, instead of going directly to the principal to address a problem, she may find the previous response was a one-time incident. Perhaps the teacher was coming down with the flu and was desperate to leave school for the day when you came to her classroom to discuss a problem. Errant negative responses can be dismissed with this approach, while if the teacher’s negativity or unwillingness to treat your student as an individual is ongoing, you may have gathered the information needed to make a meeting with the principal far more effective.
The example above also speaks to the value of perseverance in helping your student succeed. It could take a long time. And, breaking down any conflict or solution into a step-by-step process models effective problem-solving for your student. For example, you have a negative encounter with your student’s English teacher and you are feeling furious about it. Your impulse might be to stomp directly into the principal’s office and create a scene. And while a calm, effective principal might hear your frustration and help you to process it, and then move on to finding a solution that supports your student’s growth, you may not be dealing with a school leader who possesses those qualities. Furthermore, your student may not have the skills to make sense of a parental outburst in a meaningful way. So a better approach across the board is to model the practice of calming yourself completely before you connect with the principal, especially in the presence of your child. This can be challenging, but is a great opportunity to help your teenager learn good social skills. You can also enhance that learning process by mindfully describing the steps you go through to calm yourself and to plan your next step.
Flying on Their Own
Finally, when your student is ready, you can also help him learn to advocate for himself in the ways described above. All the skills parents can use to positively and effectively advocate for their students are skills that both parents and educators know these young people need to learn. Whether your teenager has high-functioning autism or Asperger’s, he or she will benefit from repeated, patient, clearly-described modeling of the constructive ways in which people communicate to solve problems and to develop relationships. Parents can role play with their students, ask probing questions of their teenager about the behavior of people on television or in the grocery store, and openly explain their own behavior as parents. All these practices let young men and women experience and succeed at being self-advocates in a safe environment.
In the End
What most of us want in life—whether we are neurotypical or experiencing the autism spectrum firsthand—is to be understood and known not only (and not foremost) as a member of a group, but as individuals. Helping your young adult be seen and appreciated for his love of pepperoni pizza, his obsession with anime, and his great vocabulary is not only vital for the important goal of giving him a sense of being valued as a person, but also because it helps the educators who teach him be more patient, more supportive, more understanding and ultimately more effective in their work.
Transition planning, in its most basic sense, means figuring out what you want to do in the next stage of your life, gaining the skills and resources you need to do it, and then doing it. In theory, everyone—autistic or not—should engage in a transition planning process, not only during high school but also during the years preceding every life change.
Of course, in the world of special needs education and law, nothing is as simple or self-evident as it appears. Transition planning is no exception to that rule. What should, ideally, be a straightforward and collegial process of planning for postsecondary life has become a contentious legal requirement, bound by laws that differ from state to state and supported by resources that may be radically different from school district to school district. What’s more, the philosophy surrounding transition varies as widely as does philosophy surrounding autism treatment, appropriate educational settings, and parenting styles.
In short (and not surprisingly), while it is theoretically possible to build an ideal transition plan and process, outcomes may not match the picture on the front of the brochure.
Who’s Driving the Transition Bus?
In some districts, a teen’s desires—no matter how apparently unrealistic—are taken seriously. One autism educator recently recounted a story, for example, of a teen who, though sight-impaired, wanted to be a pilot. Rather than hearing “that’s not an option,” he was offered a variety of related services including an opportunity to go up in an airplane with a professional pilot. It was the teen himself who, after interviewing the pilot and learning about the training process, determined that the career was not right for him—though he could develop the skills to work with or around airplanes.
This story is not typical, although it is not unique. Another similar example involves a girl with developmental disabilities whose dream was to be a country western singer. After trying out voice lessons and getting training in music theory, she found that she was in over her head—and made a different decision about her ideal future.
From one point of view, these stories are terrific examples of how highly-motivated teens can be empowered to make smart decisions for themselves. From another point of view, it’s a painful reminder of how much time and money can be wasted when one is following a teenager’s unrealistic vision of what “could” be versus what is really possible. These different perspectives highlight how differently various players view the transition process. Is it an opportunity for exploration, brainstorming, and experimentation? Or is it a process whereby a solid set of skills and resources are lined up for a young adult who desperately needs them? Or—as some suggest—can it be both?
What Is Transition Planning?
For purposes of this article, Transition planning can be defined as a process required by law which involves post high school goal-setting and implementation for students aged 14-22 who have IEPs. Here’s how transition planning is defined on the Wrightslaw Special Education website:
Transition services are a coordinated set of activities that promote movement from school to such post-school activities as post-secondary education, vocational training, employment, adult services, independent living and community participation. They must be based on the individual student's needs, taking into account his or her preferences and interests. Transition services must include instruction, community experiences, and development of employment and other post school adult living objectives. If appropriate, daily living skills and functional vocational evaluation may also be included.
In theory, a Transition Plan can include almost any kind of education, training or experience—from hygiene to banking to job training, driver’s education, sex education, college admissions and more. Even better, transition planning should be based not on what is realistic, practical or affordable, but on what a student finds interesting and desirable. Naturally, students’ ideals are often influenced by their parents’ preferences, and thus a student’s aspirations may well match a parent’s hopes and dreams.
According to the Individuals with Disabilities Education Act (IDEA), all states are required to begin Transition planning by age 16, and some states require that districts begin the planning process at age 14. Given that a student with an IEP may remain in the pubic school system until he graduates with a regular diploma or until the end of the school year in which he turns 21 (longer in a few states), it is possible for the Transition process to last for up to six years. Ideally, this would provide a wonderful opportunity to build academic, vocational, social and practical skills while also setting up a seamless transition from school to the workplace or postsecondary education, with additional resources and supports in place for housing, socialization, recreation and transportation.
How often does this idyllic scenario play out? Of course, the answer is: Rarely.
Starting the Transition Process
You should receive a Transition planning form from your school district when your child has reached (or is about to reach) the appropriate age based on your state’s laws. That age may be 14, 15 or 16. Transition planning forms differ from state to state but are generally fairly straightforward. They typically ask you to create:
In order to put together the Transition Plan, at least in theory, your child needs to have a vision for what he wants when he leaves high school. If your child is like most 14-year-olds, her “vision” may vary from a shrug and “I don’t know” to “I want to be a Grammy-Award-winning singer-songwriter.” What’s more, your child’s vision may change from year to year, so that this year’s would-be performer becomes next-year’s would-be horse farmer!
Add to the problems of adolescence in general the problems associated with autism, and you may have a very difficult time isolating a child’s desires, interests and goals. He may be unable to articulate specific directions, or she may simply be unable to imagine a life different from the one she’s always led. Alternatively, a teen on the spectrum may be extraordinarily unrealistic, because he doesn’t have the flexibility to go beyond one set idea.
In order to determine appropriate directions, many districts will implement a battery of transition assessments. These are tests are intended to help you, your district and your child to better understand your child’s strengths, needs, and interests. The idea is that, as a result of the assessments, it will be much easier to put together a vision for the future.
The National Secondary Transition Technical Assistance Center is a national technical assistance and dissemination center funded by the U.S. Department of Education’s Office of Special Education Programs. Its very large website is loaded with (among other things) tools for assessing a teen’s interests, abilities and needs. In general, the site recommends a combination of formal and informal testing tools, ranging from typical personality and vocation assessments to assessments of functional abilities, community-based assessments, work-based assessments, and so forth.
Ideally, the assessment process should provide the means to identify goals, needs and tools for reinforcing strengths and remediating weaknesses so as to reach the stated goals. Unfortunately, while there is research surrounding assessment practices, and recommendations for an ideal assessment process, the law does not absolutely require any particular battery of tests. The NSTTAC “assessment toolkit” offers plenty of testing options, but it does not provide a clear road to insisting that your district implement any particular set of instruments for any individual student.
Because the mandates regarding assessments can be very loose, it may be up to the parent to force the district to go beyond their own informal observations—or to ask anything other than “What do you want to be when you grow up?” Fortunately, the process can lead to some helpful outcomes, even when it’s less than ideal. In an interview with AA16, Nellie Aspel, Director of Exceptional Children for the Cleveland County Schools in North Carolina noted, "If enough people know the student, especially if they can’t communicate, you take that information and put it together with experiences, interviews, and know for example that the child enjoys working outside, working with people, etc. Your goal can be very general—working outdoors, working with people, etc., and then base a vision on what you can do as opposed to what you can’t do. Then build transition activities around those goals."
Beyond assessments provided and/or implemented by the school district or professionals in specific areas of development, many experts highly recommend “person-centered assessments.” According to Nellie Aspel, Director of Exceptional Children for the Cleveland County Schools in North Carolina, "Person-centered planning process empowers the central person to be at the center of the process. There are various person-centered assessment and planning processes—whole-life planning, PATH, etc. The common element is that the student is empowered to lead it. It’s about training in leadership, and taking charge of one’s own direction in life."
Tools such as the PATH Person-Centered Planning Tool have the great advantage that they are designed to encourage buy-in. If a teen is working toward a goal she herself has selected, using tools she herself has designed, she is far more likely to feel positive, energized and engaged. On the other hand, of course, person-centered planning requires an enormous investment in time, energy, and ongoing commitment from a group of people (including your child’s school district staff) for whom the process may or may not be particularly significant.
As a parent, you can tap into person-centered planning tools such as those described above with or without the district’s involvement. While this can be a rich and exciting process, however, it may not have the desired outcomes if the district and/or supporting agencies are not engaged.
From Transition Plan to IEP
While the Transition Plan itself may be legally mandated, the items included in the plan are not. To turn visions into legally mandated objectives, your team must transfer appropriate measurable benchmarks, goals and objectives from the “visioning” document into the IEP. If you, your child and your district have developed a solid Transition Plan, it should be relatively easy to use that plan to enhance the IEP. If, on the other hand, you are in disagreement—or have a not-so-solid transition plan—it can be much tougher.
What makes a Transition Plan solid? As mentioned earlier, the plan should include a vision, objectives, and steps required to meet the objectives and fulfill the vision. If you’ve described clear, actionable steps, then those steps can become IEP goals in themselves. The trick, of course, is to determine which steps to include at which point in your child’s development.
The process of developing from 14-year-old child to self-determining, independent working adult is very involved for anyone. A teen with autism will need help in almost every aspect of development and learning, from social interaction to communication to executive function. If your child wants to work in the community, she will need to learn to drive or develop the skills to access transportation systems. If your child wants to live outside of your home (or even be at home without you monitoring his every action), he will need to know how to cook, clean, wash clothes, and generally care for him or herself. If your child envisions a college career, he will need to know how to navigate a campus, prioritize work, share space with a roommate, and much more.
How much of this can you fit on a single IEP? Obviously, you’ll need to pick and choose the specific objectives you want to address, based upon your child’s age, level of ability and need. In addition, you will want to select items that are best managed by the school district rather than by you, the parent, or by Vocational Rehabilitation or other agencies. In general, however, it makes sense to select at least one objective in each of three critical areas: academics, vocational skills and life skills. All of this must be done bearing in mind that your child’s interests, abilities and needs are likely to change between the time he is 14 or 16 and the time he graduates from (or leaves) high school.
Who Manages the Transition Process?
Ideally, your school district has a dedicated transition management expert, who is trained in and knowledgeable about all aspects of the transition process. That individual understands the assessment process, has a solid grasp of the academic offerings in the district, knows just what’s available through various agencies such as Vocational Rehabilitation or Health and Human Services, is aware of vocational training and placement opportunities in the community, and has a good grasp on where to find funding, job or education coaches, peer mentors, special transportation or education programs, which colleges offer the kinds of programs and supports your child might need, and much more.
Let’s say, for the sake of argument, that your district does not have a transition management expert who can manage and guide the process as you would prefer. In that case, transition management is likely to become the job of the IEP team, the special education director, and, of course, you as the parent or guardian. It is also possible to tap into a growing number of public and private services available for families like yours.
Your district, for example, may already know that they should be including local Vocational Rehabilitation staff in your child’s IEP meetings. If not, can contact your local Vocational Rehab yourself. (Visit your state’s Roadmap on our homepage for this link.) Other resources include:
Many people can read, but when they are done reading they have difficulty remembering what they just read about. This can happen for a variety of reasons. It might be the case that so much effort is placed into sounding out the words (aloud or to themselves) that the meaning is lost. Or, it could be the case that the words are read quickly without really paying attention to what the words are saying. Otherwise, the topic could just not be of interest so focusing on the message while reading becomes difficult. Regardless of why a person has difficulty understanding what they read, there are some general reading comprehension strategies that can help. If you struggle with reading, you can consciously try these ideas yourself. As a parent or teacher, using these teaching tools might help the ASD learner build comprehension skills.
Metacognition—thinking about what we think—regarding a reading helps to strengthen overall comprehension. In other words, we need to purposefully stop while reading to go over in our minds our opinions, beliefs, and thoughts about what we read. For example:
Talk About Readings
Talking about what you read with someone else provides a different way to gain information, rather than having to do more reading. This can be especially helpful if reading is not your favorite thing to do. Having a conversation about what is read will answer some questions you might have, can teach you about other people’s opinions, and gives you an opportunity to verbalize what you read about.
Practice Reading Often
Practicing reading often is definitely a good way to get better at it. And, it doesn’t matter what a person reads. The more you read the better. It is like the “Matthew Effect” where “the rich get richer and the poor get poorer.” Students that enjoy reading, read often, and become better readers. Those that don’t like reading, spend less time reading, and fall further and further behind. Therefore, we should try to get our children motivated to read. If they like reading graphic novels, articles about sports in the newspaper, magazines, or online, encourage them to read any of those often.
Take children to the library frequently and let them check out whatever they want. Don’t try to impose what you might think they really should be reading. We want them to read—a lot—period. If you know they liked a book by a certain author, find all the books written by that author for them to select from. Or, if you know they are interested in certain topics, find reading material about that.
For the unmotivated reader, find reading material about what they like to do when they are not reading. For example, if they like watching movies, they might be motivated to read movie reviews and the entertainment section on Google news. You might think this is not reading, but indeed it is. Many people are under the impression that true reading means reading a book. This is really not the case, now more than ever because of the Internet.
In addition, if they read often about things of interest, it will help them become a more proficient reader overall, especially if they work on reading comprehension strategies in the process. Once on the road to having reading motivation, practicing reading less interesting materials might be a good idea too. In particular, practicing reading using strategies that have been practiced with motivating readings might make it easier to use the strategies with more boring topics.
Reading Comprehension Strategies
Start by picking strategies that sound appealing, and try them out one at a time. Don’t worry about mastering all of the strategies, since less can be more. In other words, it is helpful to learn a few strategies well, rather than to try to learn many strategies and use none of them due to confusion regarding which to use when. Reading comprehension strategies include:
Gradual Release Model
If you are a parent or teacher, you can use the “gradual release model” to help the ASD learner discover reading comprehension strategies. First, model a strategy by doing it for the reader. Then provide guided practice where you do the strategy together. Next have the reader do the strategy again (on another occasion) on their own.
Make sure to talk about the reading and how the strategy worked or did not work. You might need to model multiple times or do it together multiple times before it becomes a natural part of the reading process where the reader can do it independently.
Readability of Books
If reading level is a concern, use Hi-Lo books. These are books that are of high interest but on a low reading level. You might find this helpful when trying to motivate the reader, since the topics are age-appropriate while the reading is not too difficult.
Other things to look for are:
Reading and Writing Connections
You might wonder why writing has been included in the reading comprehension strategies. The reason is that it provides another way to understand and process reading material. So, if someone does not like verbalizing what they read about, using graphic organizers, blogs and journals might help them think about what they read, reflect on it, and flesh it out in a coherent manner aiding with their comprehension without having to verbally dialogue about it at length.
The goal of reading is comprehension, so I really hope that by trying some of these strategies and ideas you are better able to become a better reader, or to help your child or student achieve this goal. Remember that learning to read is a very individualized process and that specific support needs should be addressed in the Transition IEP.
Every day, for the past seven years, had begun more or less the same:
It wasn’t clear if Daniel really needed these cues from Mom and Dad to get his day started or if he was just waiting for them out of habit. But for nearly every single weekday morning since he first entered his high school’s “Life Skills” class as a 14-year-old freshman with autism, it had been a matter of routine. Like clockwork, in fact. And as usual, today Daniel was ready on time, standing by the door with his jacket and backpack slung over his shoulder at precisely 7:36 a.m., waiting for the school bus.
But this day, as Daniel’s parents said their usual goodbyes and watched him walk out to the curb, was different—today was Daniel’s 21st birthday, and he would age out of school at the end of the year. Come the end of June, that old reliable school bus would no longer arrive. The team of teachers, paraprofessionals, administrators, and yes, bus drivers, would no longer be there for him. That morning routine that had become so ingrained in Daniel and his parents and that had seemed to set a steady, familiar tone for the rest of his day, would have to change. And while Daniel was blissfully unaware of this impending change, his parents worried constantly about his all-important transition from adolescence to adulthood.
At the moment of Daniel’s diagnosis at age three, his parents felt afraid, lost and confused, and at times angry and hopeless. But before long, they had effectively become experts in the fields of autism and advocacy. They’d worked tirelessly to learn everything they could about early interventions, PECS, ABA therapy, RDI, and other possible interventions. Then they had to become master advocates for their child—and eventually for others as well—working hard and negotiating with their school district to obtain the services and supports Daniel needed in school in order to maximize his potential. In the end, they had essentially earned Ph.D.s in the subject of Daniel—experts in his strengths and weaknesses, his needs and his interests, and particularly in his rights as a child with autism in the public school system.
But now, suddenly, they were being forced back to square one. Once again, they would be alone and without the requisite knowledge it would take to navigate a completely new set of challenges in a system that was completely foreign to them. The prospects were indeed daunting, and Daniel’s parents felt that same terrible feeling as when their son was first diagnosed: A fear of the unknown.
But Daniel’s parents are not alone! It is important to remember that others have been down this road before them, and before you. They have blazed a trail. Just as there were experts for toddlers and school-aged children, there are experts as well in this Transition phase for young adults with autism. And there is a growing body of research and resources available to help parents of adolescents and adults with autism. As we know, this road from childhood to adulthood can be difficult and overwhelming for all families, but especially for those of individuals on the autism spectrum. So in February of last year, Autism Speaks launched the inaugural edition of the Autism Speaks Transition Tool Kit, a 100-page resource guide designed to help families navigate this often complicated journey.
About the Transition Tool Kit
At Autism Speaks, we regularly hear from families of Transition-aged adolescents and young adults about the worry and uncertainty they feel about the road ahead. These parents and family members find the idea of their children venturing out in the world to be daunting. They can’t imagine what will happen when school ends and the real world begins. In response to the concerns of our community, we created the Transition Tool Kit to provide suggestions and options to think about and explore as families set out on this journey.
We know that every individual with autism is different. Each person has different likes and dislikes, strengths and weaknesses. We strongly emphasize that though the path will be different for each family, the goal remains the same: For adolescents with autism to lead fulfilling, healthy, and happy adult lives. The guiding principle that we used in developing this kit is that all individuals with autism, regardless of the level of support needed, should be able to live lives filled with purpose, dignity, choices, and happiness. This kit encourages individuals with autism and their families to be proactive in their approach to the transition process.
A central theme throughout the Transition Tool Kit is the importance of self-advocacy. The most important place to start the transition process is with the adolescent. His or her hopes, dreams, and desires should drive the transition process. The transition process will take time. It is important that families work with their loved one to provide the communication, self-help, and self-advocacy skills that he or she needs in order to be an active participant in the process to the best of their ability. Helping adolescents with autism develop a “sense of self” will aid in the transition process and develop a skill that will benefit them throughout their lives. Each of the sections of the kit incorporates the principles of self-advocacy. In order to one day live as independently as possible, an individual with autism must have as much of a say as possible from the start in decisions guiding his or her future.
How Families Have Responded
Autism Speaks sends hard copies of the Transition Tool Kit to families of individuals with autism ages 14 to 22 free of charge. Since the launch of the kit, we have sent out over 2,500 copies, and over 11,000 people have downloaded the kit from our website. At Autism Speaks, we are constantly working to build upon and improve our resources to better meet the needs of families in our community. So in May 2011, we surveyed the families who received hard copies of the kit to find out what was helpful and what we could improve. We are happy to say that over 97 percent of these families were extremely satisfied or very satisfied.
For the next version of the Transition Tool Kit, we are looking to incorporate the feedback we received.
Interestingly, when we asked how we could improve the kit, half of the respondents wanted more in-depth information on each
Families found the information in the kit to be extremely helpful in their transition planning. However, one recurring comment indicated the need for more information about how to actually implement the steps and recommendations we provided in their own lives and communities. Families wanted to learn more about how they can specifically advocate for services for their children and young adults. In response, we are currently working on an Advocacy Tool Kit that will go into greater detail about the importance of advocating on behalf of loved ones with autism, and provide families with tips and tools to successfully do so. In addition, along with the state-specific Transition timeline we send out to each family, we plan to include information from the Autism Speaks Resource Guide about the resources for young adults of transition age in their local communities. We are constantly looking to expand our Resource Guide to provide families with more information about local resources. The guide currently contains close to 45,0000 resources from across the country.
Many families also mentioned how they wished they had had this Transition information sooner. Through the Autism Speaks field staff, Walk Now for Autism Speaks, other fundraising events, and our social networking sites, we are working to spread awareness about the Transition Tool Kit so that families of younger individuals gain access to this information sooner and can begin their Transition plans as early as possible. It is never too early to start planning!
We are about to send out a second survey to families who received the kit since the last survey was released. We look forward to the feedback that we receive. Based upon the survey responses, we will continue to refine the kit and our resources to best meet the needs of our diverse community. It is our hope that with the Autism Speaks Transition Tool Kit, families will be able to successfully lay the foundation for the future of their young adults with autism.
Many teens with autism spectrum disorders are capable of managing ordinary activities like daily hygiene and homework—yet their social and executive functioning skills are not up to the level of their peers. What that means is that they are neither in need of ongoing intensive support, nor are they ready to simply step out into the “real” world on their own.
This borderline situation can be nerve-wracking for everyone involved. Your teen may be unable to simply go off to college, train for or apply for an ordinary job, or live independently. Yet at the same time, it may be unnecessary to plan for a highly supported situation such as intensive job coaching or a group home.
The bad news is that your child needs more support than the average young adult But there is good news—in two forms.
First, the law states that your child may stay in high school up until his 22nd birthday—and, further, that transition programming must be written into her IEP. That means that a wide range of program possibilities may be built into your child’s high school experience, both during the school year and during the summer.
Second, more and more organizations are recognizing the “not ready for primetime” teen as a potentially important demographic. As a result, more programs are springing up across the country to provide summertime life-skill and college/life prep training for high schoolers. These programs are structured in different ways, and cater to slightly different groups. The one thing they all seem to have in common, however, is that they come with a significant price tag.
Specialized Summer Programs—What They Are, What They’re Not
A good high school program with a transition plan in place is likely to be very helpful to your child with autism. Along the way, your child should be able to build such skills as time management, money management, social interaction skills and attention to hygiene. Depending upon your child’s abilities and challenges, he or she may have limited experience working in the community, taking public transportation, grocery shopping, cooking and cleaning.
If your child with autism is, however, planning to take the next steps forward toward college, independent living, and/or employment, he or she may need more in the way of preparation. That’s where a specialized summer program comes in. Many of these programs are offered by special needs high schools as a service for their students and others with similar needs. There are also an increasing number of programs offered during the summer for young people who may later enroll in more robust year-long or even multi-year programs.
Specialized summer programs for high schoolers are not synonymous with summer camp, though there are almost always recreational elements included in the programs. Unlike camp, the purpose of summer programming is to build academic, executive and social skills while also working on life skills ranging from self-care to banking. In some cases, summer programs also include goal-setting and work on issues like self-esteem. In general:
Who Should Attend a Summer Life/College Prep Program?
While summer life/college prep programs are loaded with just the type of activities and goals your child “should” have, not every high schooler is up for spending a large portion of the summer building skills. For some young people, more traditional options—camp, volunteer activities, internships, summer jobs or just plain relaxation—are more important than structured therapeutic programs. Given that there are a growing number of recreational options available to kids with special needs, it’s important to be sure that a summer life/prep program is right for your child and your family. Before leaping into a program, therefore, it’s important to consider these questions:
Assuming that you have decided to give a summer program a whirl, is your child a good candidate for the available offerings? Programs do vary, but they tend to have a number of similarities, including high instructor to student ratios, focus on social thinking, opportunities to take part in community activities, and opportunities to take on challenging situations and relationships in a supported environment.
All this is to say that life and college prep programs, whether offered during or after high school, are most appropriate for young people with autism and related disorders who are motivated and capable of handling the challenges offered. It's unlikely that such a program will be appropriate for a young person with severe cognitive or behavioral challenges. It’s also unlikely that such a program will serve to motivate a young adult with ASD who really doesn’t want to take responsibility for his or her own life.
Bottom line: If your high schooler with autism is motivated to take part in a program that will help him to build his independence, and you feel he is ready for a challenge, one of the many available programs may be right for you. If, however, your child is resistant, or not quite ready for an away-from home experience, there are plenty of other summer options.
How to Find a Life/College Prep Summer Program for Your Child with Autism
There are several large, multi-site programs that offer summer opportunities for teens on the spectrum. But while these are well-advertised, they are by no means the only options out there, and they are often prohibitively expensive. Before selecting one of the best-known programs, consider taking these steps:
Once you’ve zeroed in on a few options, learn as much as you possibly can about the program, the students they serve, the staff, the location, the goals and the outcomes. (Think long and hard about any program that is more than a few years old and cannot discuss outcomes reliably.) If you can, visit the program yourself, interview past participants, and talk with parents. Even if the program is generally a good one, it may or may not be the right match for your individual child.
The Cost of Independence
If you happen to have an extra $2,500 to $10,000 in your pocket, you’re all set to pay for your child’s summer experience. If, on the other hand, you don’t have that kind of money set aside for a transition program, you may be stuck. There are only a few options for finding the money you need. These include:
Sigh. Does anyone ever feel fully prepared for an IEP meeting? For those of you fortunate enough to not know that IEP stands for Individualized Education Plan, I'm a bit envious. Although, if you're the parent of an ASD student who does not face an IEP meeting every year, the circumstances around that may not be ones to envy. Maybe your child isn't receiving services from your LEA, and you pay out of pocket for education and support services. Or maybe you're homeschooling, God bless you. In light of those circumstances, I should not complain about an annual IEP meeting. But oh how I do dread them! I always go in feeling like the underdog. I feel as if there's something more I should be asking for, but I'm never quite sure what it is.This year I resolved to go in prepared. I pulled out last year's copy of Cameron's IEP and compared it line by line to this year's draft—which I had received a week before the meeting. It was the first time I had thoroughly read a draft copy before the meeting. Full disclosure: In the past, I've paid about as much attention to IEP proceedings as I did to mortgage closings. (Sign here please.) But now that Cameron and I are in transition, and I can count future IEP meetings on less than one hand, I felt it was high time I became an active participant.It was so much easier than I had anticipated! I walked away feeling that some definite improvements were made to the plan, and all the participants at the meeting were in agreement with my suggestions. My approach was simple. I kept Cameron's biggest challenges in mind, and looked at how the IEP was (or wasn't) addressing these challenges. One thing that I'm trying to get Cameron to realize is that it's okay to speak up when he doesn't understand something. His default coping skill is to pretend he understands, and avoid further discussion. I asked for a goal to address this, and got it—in the form of a strategy requiring teachers to regularly check in with Cameron and ask him to explain instructions he's been given. I also feel it is very important for Cameron to understand his disabilities and be able to communicate them if the situation calls for it. My thought is that as Cameron spends more time in the community on his own, there may be instances when he will need to disclose his disabilities in order to get adequate assistance. At the airport, for instance, he may need to ask the gate agent for early boarding, otherwise ADD might contribute to missing the boarding announcement. The IEP now has a goal pertaining to his ability to ask for assistance and another goal to develop an understanding of his disabilities. Another issue addressed during the IEP meeting was my desire to give Cameron exposure to a more integrated environment. He's been in a separate special needs setting for nine years, and I'd like for him to have opportunities to socialize with neuro-typical peers. I asked for assistance in finding a peer mentor at our neighborhood high school. While this couldn't feasibly be documented in the IEP, the representative from the public school system was more than happy to pursue this for me.Who knew that an hour of preparation before the IEP meeting would lead to such an overwhelming sense of relief and empowerment? Well, I'm sure a lot of people are thinking, "Duh! We do this every year!" But it's such a great feeling to get over myself and my hangups and get to some concrete improvements to Cameron's strategies. Planned improvements anyway. Stay tuned for progress reports.
tran·si·tion (n.) movement, passage, or change from one position, state, stage, subject, concept, etc., to another; change
A simple definition, but as students with Autism Spectrum Disorder reach adolescence and enter the Transition phase of their education, there is one very important word in this definition that is often overlooked: "To". To what are they transitioning? The transition destination isn’t as simple as a single pinpoint on a map. A quick internet search on transition for students with intellectual and developmental disabilities will yield a plethora of destinations:
Internet searching also leads to an overwhelming amount of information that changes daily, further complicating the definition of To. What are the best “go to” resources? How does one best determine the efficacy of various programs and service providers? It’s crucial to learn to weed through the emotional and provocative marketing speak and analyzing outcomes and results.
Preparation is fundamental to any plan, transition or otherwise. Common sense tells us you can’t plan a journey unless you have a destination. How can parents and care providers best define destination when student developments are unpredictable over the next three months, much less the next three years? The process of transition planning is often a paradigm shift for parents and students alike. Suddenly all the previous years’ energy and hope devoted to achieving academic gains and showing improved test scores now must focus on what happens when the testing is no longer a sufficient predictor of milestones. It’s time to start finding answers to those questions that have been lurking around the corner and have been somewhat difficult to ask, much less answer. Will he be able to live independently? Will she go to college? How long will this financial drain last? Will she be able to earn a living? What support services are available as he enters adulthood? In many ways, it’s like receiving a diagnosis all over again. Although the diagnosis may remain the same, the game plan changes significantly.
All parents are faced with some transition dilemma or another. Parents often lull themselves into thinking that once their child goes off to college, their work is done. However, as has often been said: The bigger the children, the bigger the problems. Families everywhere are frequently faced with an unexpected 5-Year-Plan for college. Not to mention the boomerang effect of children leaving the nest, only to return because of an unfortunate economic swing. It’s a safe assumption that every parent faces their children’s transition years with some trepidation, regardless of the children’s capabilities or limitations. But when the financial demands will likely extend beyond the immediate future, such as in the case of the student with ASD , it is essential to make a plan for the allocation of funds. This allocation plan may well need to cover a lifetime, not just a life stage. Being prepared is the best line of defense .
Transition to Postsecondary Education
As Transition planning begins, it’s not always evident what postsecondary education might look like, or if it’s even an option. Students with developmental delays often experience a developmental pop in their mid-to-late teens, making the planning process all the more difficult. The good news is that choices for postsecondary education are increasingly available to the student with ASD. The challenge becomes assessing the quality and effectiveness of offerings for this population as a whole, not to mention a particular individual with a unique learning profile.
In it’s report, "Postsecondary Education Options for Students with Intellectual Disabilities," the Institute for Community Inclusion identifies and describes several types of Postsecondary Education models for students with intellectual disabilities. Some models are segregated, while other seek to foster partial or complete inclusion with nondisabled peers. While understanding the models is one thing, trying to locate them is another. You may, after much link hopping and Googling, find a model program that seems to be an ideal match to what you're seeking. The problem then becomes that many of these programs have extremely limited enrollment capabilities and long, long waiting lists. Why, if the demand is so high for such programming, is it not more readily available? And if you do find a program that seems to be a good fit and has openings, how do you assess whether the service provider is engaging in best practice and not simply telling families what they want to hear? It’s crucial that families learn both to ask the right questions and evaluate the answers.
Transition to Employment
In order to be self-sufficient, one must have access to income. One of the main intents of the transition plan is to eventually obtain and maintain employment. In the 2009 report,"The Current State of Services for Adults with Autism," author Peter Gerhardt notes that, "Outcome studies of adults with ASD document that, independent of current ability levels, the vast majority of adults with ASD are either unemployed or underemployed." But a job alone may not be enough. Is the individual appropriately employed for his or her skill level? Are the hours worked per week determined by the employee’s capacity or the employer’s comfort level? While being offered a job is often cause for celebration, opportunity only truly exists when the job is a good match and appropriate supports are in place. As Gerhardt also points out in the report, “…(T)he potential of individuals with ASD to become employed and engaged adults is limited more by the failure of the systems charged with supporting them than by the challenges associated with being on the spectrum."
As the ASD adult transitions out of public education and into adult services, the delivery of services becomes an entirely new terrain. Gone are the days of entitlement to service. The onus lies with the individual and the family to establish eligibility for service and find service providers. The availability of service providers offering employment support varies by state. Some large corporations are taking the initiative in recruiting individuals with special needs, and receive tax incentives for doing so. Of course tax law changes from year to year, so what’s available today, may not be tomorrow.
As with postsecondary education options, there are many types of employment models with varying degrees of support. Options range from segregated employment—typically referred to as a sheltered workshop—to constant or intermittent oversight by a job coach, to working fully independently alongside nondisabled peers. Understanding options will help immeasurably in drafting transition plans and working with school and vocational personnel.
Transition to Independent Living
In addition to thinking about postsecondary education and employment options, families of teens and young adults with ASD must consider future living arrangements. How, where, and with whom is the young adult with ASD going to live? Many adults with autism continue to live with family members. Are you, your child’s siblings or extended family members adequately prepared for such an arrangement? If living at home isn’t in the best interest of either the adult with ASD or the family, then examining housing options are a must. In addition, it’s crucial to include the development of independent living skills in transition planning. The focus of this skill development should be extremely individualized.
Transition to Eligibility for Adult Support Services
Parents and service providers of the ASD student are all too familiar with the right to a free and appropriate education. As a student exits public education and transitions to the next life stage, what once was a question of entitlement becomes a question of eligibility. Under the Individuals with Disabilities Education Act (IDEA), students with disabilities are entitled to services until they either graduate with a regular diploma or age out of the system at age 21. Once the young adult with ASD leaves the public school system, the same right to services doesn’t exist. Adult services are accessed by being found eligible for benefits. Eligibilty varies from program to program and from state to state. Simply having an autism spectrum diagnosis does not guarantee adult services. Actions taken during the transition planning stages can impact availability of supports when school days are over.
It’s All About the IEP
According to attorney Wayne Steedman of Callegary and Steedman, PA, it is critical that parents pay very close attention to the transition plan in their child’s Individualized Education Plan (IEP). Transition goals and objectives are required by law to have the same format and measurability as academic goals. Formal assessments must be conducted to determine an appropriate transition plan. Parents need to carefully assess the IEP to ensure that these requirements are met. And once IEP transition goals have been written, appropriate services must be added to achieve them. Schools may utilize outside service providers if necessary, and the school transition specialist can help arrange for a state Vocational Rehabilitation (VR) counselor attend IEP meetings.
Amy Alvord, Transition Specialist at Ivymount School in Maryland, notes that the biggest mistake parents make during the transition years is twofold: Planning isn’t started early enough, and generalizing what the student is learning at school isn’t done at home or in the community. It is crucial for students to learn self-management skills if they are to be successful at living independently. It is also important for the student to develop what Alvord refers to as “self -disclosure.” This means that the student is able answer questions such as “What’s hard for you?” and “What helps you?” in a clear manner that can be generalized in the community.
Parents and students must be active participants in transition planning, and begin the process as early as possible. While IEP meetings might seem like old hat, families must refocus energies to make these legal documents meaningful. There’s much more to exiting the school system than planning a graduation party. Transition for a student with ASD might be better defined as an evolutionary process:
ev·o·lu·tion (n.) A gradual process in which something changes into a different and usually more complex or better form.
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