The Importance of Self-Advocacy in the Transition Process

The most important place to start the transition process is with your child who is now or will soon be an adolescent or young adult. His or her hopes, dreams and desires should drive the process.

Some individuals with autism can verbally communicate their goals and ideas for their adult lives. These conversations should serve as starting points to develop their transition plans. Some adolescents may not be developmentally ready to tackle the transition process. Others may be unable to express their wants and needs for the coming years due to limited communication skills. This is particularly challenging for families, as many want to provide their adolescent with the life that he or she wants.

Remember that transition planning is not a single conversation, but rather a process that will evolve over time.

The transition process will take time. It is important that you work with your adolescent 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.

What is Self-Advocacy?

For most of your child’s life, you have probably been doing the advocating – making decisions for him or her and making sure your child has gotten what he or she needs, wants and deserves. However, as individuals with autism age, they will need to learn to advocate for themselves to the best of their ability. Helping adolescents with autism to develop a sense of self will aid in the transition process and will develop a skill that will benefit them throughout their lives.

Self-advocacy involves speaking up for yourself, asking for what you need, negotiating for yourself, knowing your rights and responsibilities and using the resources that are available to you. It is never too early to begin to teach self-advocacy skills. Learning to ask for help is another step in developing self-advocacy skills. In order to do this, the individual must be able to identify that there is an obstacle or difficulty, and then seek out assistance to have the issue resolved.

Disclosure

It is important to note that part of self-advocacy may involve disclosure. Therefore, it is important that an adolescent be told that he or she has autism. Be sure to share with your child or adolescent that autism has provided him or her with strengths, as well as certain challenges. Each person will react differently, but many individuals with autism have shared that they were relieved to know that there is a label for what may make things more difficult. These individuals realized that their challenges are not due to any fault of their own, but only because their brains work differently.

It may be helpful for the individual to join a support or social skills group for those with similar abilities. You may be able to find groups in your area in the Autism Speaks Resource Guide.

How Do We Teach Self-Advocacy Skills?

Self-advocacy should be taught throughout a person’s lifetime. It can start in small ways by teaching an individual to make choices. Gradually, more advanced skills such as those involving negotiations and disclosure should be added to the curriculum if appropriate.

Teaching self-advocacy skills will be a process and it will take time to acquire these skills.

It is important to teach your child or adolescent about the decision-making process, i.e. clearly defining the decision, weighing pros and cons and learning from each choice for next time. Start with decisions as simple as what clothes to wear each day. You can eventually build up to decisions about making his or her own schedule, all the way up to decisions like what therapists to work with and what topics should be discussed at an IEP meeting. There are several tools that are available to help you and your child think about what he or she wants and build the skills necessary to communicate his or her desires for the future. See the Resource section of this tool kit for more information.

Learn more about self-advocacy and planning for the transition to adulthood in the Autism Speaks Transition Tool Kit.