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Developing Independence in Your Teen with ASD

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Developing Independence in Your Teen with ASD

Chantal Sicile-Kira

Autism Asperger’s Digest  May/June 2012

“The important thing to my success as a young adult is I learned to understand my need for breaks and accommodations and how to ask for them. Speaking up for myself was hard to learn but is necessary for survival as an adult. Also learning to control my body and overwhelming moments is difficult and I work on that a lot. I have learned to be more in control of my life and I have realized that I have to work hard to make my dreams come true.”

Jeremy Sicile-Kira

 

Jeremy’s ability to self-advocate and self-regulate did not happen overnight. As described in our recently published book Full Life with Autism: From Learning to Forming Relationships to Achieving the Right Level of Independence (Palgrave Macmillan, 2012), learning to communicate his needs and wants (self-advocacy) was a long, slow process. Jeremy continues to search for new techniques to help in the area of self-regulation. Transitions such as having new support staff or attending a new school can still be challenging.

Students on the spectrum—of all ability levels—must learn self-advocacy and self-regulation skills in high school and in transition programs to live on their own or with others, seek employment, keep a job, and attend college. What that might look like for each person is different, depending on their ability level, but it is necessary for them to be included in a society that is not always understanding of their differences

High school (or in a transition program) is the last time that a person can count on help from mandated supports. After the student leaves the school district, he may be eligible for some services, but the wait lists are long and there are no guarantees he will have supports. Thus it is necessary to ensure that whatever life skills a young adult needs to learn be included in his Individualized Transition Program (ITP) and Individualized Education Plan (IEP).

Self-Regulation

Although self-regulation is a life skill not always practiced by adolescents, on or off the spectrum, it is important to learn. It requires a certain amount of self-awareness, which does not always come easily to those on the spectrum. Self-regulation involves recognizing, communicating, and managing sensory as well as emotional overload. A six-year-old having a meltdown in public or touching another shopper’s glittery sweatshirt can be understandable. However, these behaviors exhibited by a teen could very well get him in trouble with the law for appearing to threaten others.

Self-regulation is a lifelong process because individuals change over time, as does the effectiveness of the strategies in place to stay regulated. Below are some tips on how to help a teen learn to self-regulate. Not all the ideas listed here may be appropriate for your youth as everyone is different, but these can be a starting point for discussion:

  • Tell your teen what is going to happen next. This is the strategy that individuals on the spectrum told me helps them the most. It helps them prepare for change occurring, including transitions to environments or situations they may not feel that comfortable in (e.g., dentist, crowded store).
  • Find an appropriate “transition item” for him to hold. Carrying a familiar item from place to place is helpful because it may be the only constant in what your teen feels is a world full of sensory surprises. Having a photo of a favorite item as wallpaper on a cell phone or iPad or carrying an age-appropriate book or magazine can do the trick.
  • Write expectations and rules of behavior with your youth. Some teens like to be reminded of the rules of behavior in each environment. These can be simple and written with the individual. This is helpful especially for those who do not have behavioral flexibility (see Jeremy’s sidebar).
  • Create social stories and options. Writing up contingencies and options for predictable and unpredictable scenarios can be helpful in unexpected or stressful situations.
  • Help your teen recognize his tipping point. Help your youth learn how to recognize what his emotional or sensory “tipping point” is before he reaches it. At first you will be the one to recognize it; for example, if you notice him start to rock faster and faster. When he is calm use social stories to explain what you saw as the tipping point, and have him identify what he was feeling.
  • Teach him to ask for a break. Once he can recognize his tipping point, teach him to communicate the need to regroup  before he reaches the point of no return. As he gets older, giving him more responsibility for scheduling breaks and choosing an appropriate coping strategy can be very empowering for him.
  • Help him find techniques to stay calm and regulated. A person may find that using breathing  techniques or counting helps. Having small items, such as a ball to squeeze, a piece of ribbon in his pocket, or a book to look at, may help as well. Regular exercise, yoga, natural herbs, and some medications can be beneficial for staying calm.

Self-Advocacy

Self-advocacy refers to an individual’s ability to effectively communicate, convey, negotiate, or assert his own interests, desires, needs, and rights. It involves making informed decisions and taking responsibility for those decisions. For those who are on the more able end of the spectrum, self-advocacy is important as they will be responsible for asking for accommodations at college or on the job, and asking for clarification from the professor or a work colleague. For those who use technological devices to communicate and need more supports, knowing how to ask for assistance to get their needs met is a necessity. A person with little or no communication skills should at least be able to point to “Yes” or “No” and have his choice respected. Here are some tips for helping your youth develop good self- advocacy skills while still in school:

 

  • Help your teen recognize his strengths and weaknesses. Knowing his weaknesses will help your teen understand what areas he needs help in. Knowing his strengths will help him have a positive self-image.
  • Teach him to understand his rights and responsibilities. Having certain rights as an adult also means that he has certain responsibilities.
  • Teach him about the accommodations he may need. When certain accommodations are needed on the job or at college, he needs to be able to ask for them.
  • Have him practice how to communicate needs and preferences. Start by teaching him to be specific when ordering in a restaurant—a safe environment where people are happy to provide what you ask for. Then he can learn how to discuss his needs in an assertive, not aggressive, manner.
  • Teach him to ask questions. As an adult your teen will need to ask questions when something is unclear. Knowing who the key people are to ask is important as well.
  • Use the IEP process to instill self-advocacy. This includes writing goals based on some of the above skills he needs to learn, but can also be practiced by having the student participate and take an increasingly more important role every year at his IEP team meeting.

Ensuring that your teen learns self-regulation and self-advocacy while still in high school (or the transition program) is an important step in preparing for the transition to adult life. Make sure it is included in his ITP so that he will be prepared for real life as an adult. More opportunities are available to those who can stay regulated and speak up for themselves. Giving your youth the tools he needs to succeed in the community can help him have a more independent and satisfying life. And isn’t that what we want for our teens—on and off the spectrum?

Self-Regulation and Self-Advocacy

Jeremy Sicile-Kira

The thing about behavior is that people like me can experience sensory and emotional overload because we are very sensitive to everything around us.

I don’t understand behavioral flexibility, a concept I learned about in my intercultural communication class in college. Behavioral flexibility is about being able to adjust your behavior according to the context of a situation or environment. Neurotypicals adapt their behavior depending on the social group such as whether they are in church or in a bar. They can also change their behavior depending on the people they are with. Being in Las Vegas with family is different from being there with male buddies! But behavioral flexibility does not come naturally for people like me who are sensitive to sensory and emotional challenges. This is why self-regulation needs to be taught to teenagers before they leave the school system.

I have spent many years learning to control my sensory challenges by doing a lot of different things. I learned to give a break card or point to the “I need a break” icon on my different communication devices, and then I would go for a short walk. I learned to exercise for longer and more frequent periods of time.

My emotions are harder to control. Frankly, I behave calmly when I feel safe. If I feel unsafe around certain situations and people, I may go into “fight or flight” mode. I get myself regulated by getting away from the situation and people.

Too often people like me tell people our needs only when asked. Teaching self-advocacy in K–12 helps establish a great foundation for college and adult life. Every time I think about self-advocacy I become inspired. Self-advocacy is about becoming more thoughtful and involved in making decisions about your life. Try to be involved in picking your team of supports. Try to teach yourself to speak up. Respect yourself to know that you have a right to master your own life by making your own choices.

 

Chantal Sicile-Kira is the founder of AutismCollege.com, which provides practical information. A Full Life with Autism is her fifth book. Visit autismcollege.com/book.

Jeremy Sicile-Kira is a student,  writer, presenter, and advocate. He likes to travel. A Full Life with Autism is his first book. Visit www.jeremysicilekira.com.

 

Copyright © Autism Asperger’s Digest. 2012. All Rights Reserved. Any distribution, print or electronic, prohibited without permission of author.

 


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