Self-Advocacy
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. Their 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.
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 they will need 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 them and making sure your child has gotten what they need, want and deserve. However, as autistic people 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
Part of self-advocacy may involve disclosure, and it is important that your child is aware that they are autistic and to understand that autism has provided them with strengths and certain challenges. Each person will react differently, but many individuals with autism have shared that they were relieved to know their diagnosis. 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 at AutismSpeaks.org/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. For some, you may need to start with decisions as simple as what clothes to wear each day. You can eventually build up to decisions about making their 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 they want and build the skills necessary to communicate their desires for the future. See the Resource section of this Tool Kit for more information.
Person-Centered Planning
As mentioned, the development of the transition plan should be driven by your child’s desires, preferences, strengths and challenges. This is the theory behind person-centered planning.
The process usually starts with an initial team meeting to identify opportunities for the autistic person to participate in the community, find employment or postsecondary education and live as independently as possible. To the best of their ability, your child should play a central role in the meeting. They should even choose who to invite to this meeting – this might be family members, friends, teachers, therapists, etc. The process will provide you and your adolescent with a vision for their future and some specific steps to get there. Team members are responsible for implementing the strategies discussed in planning meetings. It is best to prepare your child as much as possible for these meetings so they are able to participate as much as possible.
More information about person-centered planning can be found on the PACER Center website and individuals and families can get assistance with person-centered planning by contacting their local University Center on Excellence in Developmental Disabilities or Parent Training and Information Center.
There are several person-centered planning tools available to families. The next page has information about two tools that families have found helpful.
PATH: Planning Alternative Tomorrows with Hope
PATH is a person-centered planning and goal-setting tool used to map out a vision of a desirable future for the individual. This tool helps families to think about the future and then work backwards to determine the steps necessary to achieve that future.
PATH, developed by Jack Pearpoint, John O’Brien and Marsha Forest, starts with identifying the individual’s “dream” and creating a portrait for the future they desire. Based on this ultimate vision, the team then thinks about the goals for 1-2 years ahead, followed by the next few months and continuing to the present. The team next determines the immediate steps that should be taken to achieve that long-term vision.
PATH resources can be found at inclusion.com/path.html.
MAPS: Making Action Plans
MAPS is a collaborative action planning process used to help an individual create a plan for their own life. During the meeting, the team develops a MAP to serve as the compass that points in the direction of a positive future for the individual with autism. Some essential elements of a MAP meeting include a personal and informal atmosphere, the presence and participation of the focus person and the key actors in their life, the discussion of key issues and the development of a concrete plan of action to begin right away.
There are eight questions that should be covered by the facilitator in the MAPS meeting, divided into 2 parts:
PART I
1. What is a MAP?
2. What is the person’s story?
3. What is your dream?
4. What is your fear?
PART II
1. Who is the person?
2. What are the person’s talents, gifts and strengths?
3. What are the person’s likes and needs?
4. What is the plan of action?
The answers to these questions should drive the development of a MAP for the individual.
Conclusion
When thinking about all aspects of transition planning, keep in mind that teaching your child to advocate for themselves can make a big difference in helping to secure the supports and services needed to live the life that they want and deserve. Remember that you can start very small and build upon these skills gradually and to the best of your child’s ability. Even just teaching your child that they have the right to make or contribute to decisions big and small can go a long way. Even though it may not be easy to communicate them, your child has thoughts and feelings just like any other young adult who wants to shape his or her own future.
Start small, start early and you can succeed in providing your child with a life of happiness and dignity.