Milestones Autism Resources

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Warrensville Heights, OH 44128

Phone: (216) 464-7600

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Self-Advocacy & Self-Determination: How to Share Your Needs and Protect Your Rights

Top 10 Tips for Becoming Your Own Best Advocate

  • Develop a communication system that is effective for you. Help others you interact with understand your communication system.
  • Make a physical binder and/or online folder with dividers for organization. Keep good records and be prepared and organized for any meeting or appointment.
  • Make sure you have your key contacts in your phone (both their email and their phone numbers).
  • 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.
  • 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.
  • 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.
  • Present yourself in the best way possible—this means making sure your appearance is well-kept and your personal hygiene is pleasing to others.
  • 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.
  • Learn all you can about your disability and practice explaining how your disability affects you.
  • Know and understand your rights and responsibilities, including what IDEA and ADA mean for you.

Building Self-Advocacy Skills at Different Stages

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.

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.
  • Explore your interests through volunteering, internships or summer jobs. Look at vocational tracks in your areas of interest.
  • Attend camps or overnight stays to get comfortable with being away from home and express what you want.
  • 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 your 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.
  • Make your own doctor and other medical appointments.
    • Carry your own necessary documents (i.e. insurance, ID).
    • Understand what your medications are, when you need to take them and how to refill them.
    • Make sure you put a calendar reminder for those medications you have to make a doctor’s appointment to refill.
    • Start being responsible for taking your medications with supervision.
  • 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.
  • If appropriate search for post high school options and get to know the support people who you would be working with.

Ages 19-22

  • 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.
  • Continue to foster relationships with mentors, those who are autistic and those who are not.
  • When you are unsure about how to handle a problem discuss your possible options with your mentor(s) for advice and support.
  • 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.
  • Make your own doctor and other medical appointments.
    • Carry your own necessary documents (i.e. insurance, ID).
    • Use your self-made “My Life Binder” to ensure effective visits (can be physical binder or online folder of documents and 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.
  • Keep up-to-date on legislation that affects you.
    • Read news, attend community meetings, join online advocacy groups

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

Additional Resources

Milestones Worksheet: Tool for Transitioning to Adulthood

A Curriculum for Self–Advocates from Autism NOW

Milestones Self-Determination Progress List

Milestones Core Components of Self-Determination

AIR Self-Determination Checklist for Students

AIR Self-Determination Checklist for Parents

AIR Self-Determination Checklist for Educators

Navigating College: A Handbook on Self-Advocacy

Being a Healthy Adult – Medical Care

Opening Doors to Self-Determination Skills Guidebook

The Arc's Self-Determination Scale

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