Self-Advocacy & Self-Determination

Self-advocacy is an individual’s ability to effectively communicate, convey, negotiate or assert his or her own interests, desires, needs, and rights.  It involves making informed decisions and taking responsibility for those decisions. (VanReusen et al., 1994)

Self-knowledge is the first step towards advocating for your rights.  You need to know your strengths, needs, and interests before you can begin to advocate.

Self-advocacy skills should be learned as early as possible.

There are many opportunities to practice self-advocacy regardless of your age or communication abilities.

Self-advocacy begins by learning how to make personal choices, such as making choices about what to eat, how to spend your free time and what you will do after you graduate from high school.

Ages 2-5

  • Teach how to communicate “yes” and “no”
    • Always honor requests when reasonable to encourage beginning of self-determination
  • Encourage child's special interests and incorporate those interests as motivators and reinforcements
    • Foster connection between asking (or advocating) for toy and receiving it
  • Expose child to problem-solving thought patterns by saying out-loud how you will handle a problem the child is aware of (like not having an ingredient to make a meal)
    • Always demonstrate calmness and an ability to self-manage emotions when dealing with a problem, it will help your child to do the same later on in life
  • Encourage ability to communicate preferences for clothing, food, activities
    • By offering the option of choosing between two good choices (t-shirt or polo, apple or banana, reading or playing a counting game) parents and teachers can foster positive decision-making
  • Include child with ASD in inclusive, community-based settings and activities
    • Typical peers will serve as models and reflectors, the child with ASD may learn appropriate social interactions and may become more aware of their innate differences
  • Additional Reading: Moving from Preschool to Kindergarten: Planning for a Successful Transition and New Relationships

Ages 6-10

  • Expose to healthy living principles and ensure positive experiences with positive decisions
    • Explore recreational activities, adapted or typical
    • Learn about good food choices and how they  impact how you feel
  • Foster an awareness of the child's strengths and challenges
    • Teach child to request help appropriately
    • Praise child's strengths and foster development of those strengths
  • If cognitively appropriate, foster an awareness of what Autism Spectrum Disorders means
    • Exposure to words such as autism, Asperger's, Persuasive Developmental Disabilities
    • Talk with child about common characteristics of Autism Spectrum Disorders and how they impact them
  • Help child develop a self-awareness and understand when they need help or a break
    • Work with them to identify their strengths and weaknesses (school & community-based)
    • Design a system for the child to notify an adult when they need a sensory break
  • Role play scenarios that may come up at school and how to deal with them
    • Teach your child how to appropriately ask for a closer seat, different partner for a project, help with a bully
    • Practicing these skills will provide a structured “script” to use in the moment
  • Enroll child in social skill classes, counseling, speech therapy and/or other activities that will help the child learn more about functional communication skills
    • Help child develop the ability to manger anxiety or anger, particularly in public settings, by teaching ways of communicating causes for anxiety or anger to adults that can help them
    • Foster consistent use of same communication methods at home, school and in counseling sessions

Ages 11-13

  • Encourage your child to order at restaurants using own communication system
    • Help write a script for practice and take to the restaurant.  Remember to include when to say “Please” and “Thank you” in the script.
    • If child uses an assisted communication device, encourage them to be patient with your server who may not be familiar with someone using assisted communication devices.
    • If something is wrong with the food, coach your child on how to get the server's help.
  • Have child participate in planning weekends and free time.
    • Help guide the choices so child learns reasonable options such as: “First you play a game or talk with a friend, then you can play video games.”
    • Incorporate special interests that are community-based. For example, if your child enjoys swimming, take him to a public recreational center for leisure time and help him learn to use the public pool successfully.
  • Take child with you when running errands and make sure you allow for teaching time.
    • When you go to the bank, teach child steps of making a deposit
    • When going to the store, have child be responsible for finding, unloading and paying for items (with parent's money and supervision)
  • Learn about what IDEA (Individuals with Disabilities Education Act) is and how it protects your child in school.
    • If your child is not present in your Individualized Education Plan (IEP) meetings, make sure his input has been considered including what accommodations have and have not worked
    • Teach your child to communicate with you if he is not receiving an accommodation or service that is written in the IEP.

Ages 14-18

  • Make decisions about personal items to purchase and learn about budgeting skills for those items
    • Selecting and purchasing (with earned money) hygiene products, clothes, food
    • Being responsible for keeping track of when personal items need to be purchased
  • Direct your own IEP meetings (ask a parent or teacher for help preparing).
    • In the Self-Advocacy Toolkit you will find helpful resources detailing the planning process for becoming the leader of your IEP meetings.
    • Review long-term goals with family and loved ones before IEP meeting, and have a script to explain what the long-term goals are for planning your transition services.
  • Write an Accommodations Letter to your future teachers or employers.
    • Explain how your disability impacts you and any reasonable accommodations you need to be successful in school or in the workplace.
    • Highlight your strengths and the value you can contribute to a team.
  • Ask for help finding possible mentors in your community.
    • Learning from someone with a similar disability who is older and has achieved some successes will help you make choices about your future and will provide another support.
  • Learn what the ADA (Americans with Disabilities Act) is and how it affects you.
    • Make a chart of the differences between your rights under IDEA and those under ADA.
  • Register to vote and if you are a male you must, regardless of your disability, register for the draft.
    • Even if your parents choose to remain your guardian you still have the right to vote and you still must register with the military.

Ages 19-22

  • Be in charge of managing all of your benefits, including sending in pay stubs and other needed documentation.
    • If something goes wrong with any of your benefits know who you can go to for help.
  • Keep up-to-date on legislation that affects you.
    • Read news, attend community meetings, join online advocacy groups
  • Make your own doctor and other medical appointments.
    • Carry your own necessary documents (e.g. insurance, ID).
    • Use your self-made “My Life Binder” to ensure effective visits (may include scripts, visual supports, written list of questions to ask the doctor, accommodation letter
  • Pay all bills, with assistance or independently, that are solely yours (cell phone, transportation)
    • Make sure you are aware of bill statements and are reviewing them for accuracy.
  • Continue to foster relationships with mentors, those with ASD and those without.
    • When you are unsure about how to handle a problem discuss your possible options with your mentor(s) for advice and support.
  • Be responsible for asking for all accommodations you use at the workplace and in the community.
    • Know who to talk to when you feel like your rights are being violated.

Self-advocacy skills should be practiced at your school, workplace, medical offices and any other community setting where you have rights and responsibilities.

Top Ten Tips for Becoming Your Own Best Advocate

  1. Make a binder labeled My Life Binder [See the My Life Workbook for a good example] with dividers for organization.  Keep good records and be prepared and organized for any meeting or appointment.
  2. Find out who the key people are in every area of your life and how to contact them if necessary.  Make a section in your My Life Binder labeled “Important People” that includes all relevant contact information.
  3. Develop a communication system that is effective for you.  Help others you interact with understand your communication system.
  4. Explore activities and interests to discover your personal strengths and weaknesses and practice explaining to others what you are good at and what you struggle with.
  5. Be willing to ask questions when you don’t understand something. Take notes on things you don’t understand and don’t feel ashamed if you need to ask more than once.
  6. Ask someone you trust to help you if you have trouble making a decision and include them in any important meetings or appointments related to that decision.
  7. Present yourself in the best way possible—this means making sure your appearance is well-kept and your personal hygiene is pleasing to others.
  8. Polite persistence and respectful reminders work better than getting mad.  Getting upset will often get you nowhere.  If you get upset with someone take time to calm down before you try to talk with them again.
  9. Learn all you can about your disability and practice explaining how your disability affects you.
  10.  Know and understand your rights and responsibilities, including what IDEA and ADA means for you.

Additional Resources

Milestones Worksheet: Tool for Transitioning to Adulthood
A Curriculum for Self–Advocates from Autism NOW
Self-Determination Progress List
Core Components of Self-Determination
AIR Self-Determination Checklist for Students
AIR Self-Determination Checklist for Parents
AIR Self-Determination Checklist for Educators
Self-Advocacy Guidebook from Autism Speaks
Navigating College: A Handbook on Self-Advocacy
Student Involvement in The IEP Process
Being a Healthy Adult – Medical Care
Opening Doors to Self-Determination Skills Guidebook
The Arc's Self-Determination Scale