By Patty Laushman
Navigating the world as an autistic adult can sometimes feel like an intricate puzzle, where understanding your needs, communicating them effectively, and seeking the right support are key pieces.
Self-advocacy is a powerful tool that empowers you to define your own path, set and achieve goals, and ultimately enhance your quality of life. In the end, when these pieces are all in place, you can experience a quality of life that may be unimaginable to you today. Self-advocacy can help you live your best life!
In this blog post, we'll explore the fundamental principles of self-advocacy. We'll talk about how to identify your unique needs and goals, build effective communication skills, seek support and resources, and overcome the challenges that may arise along the way.
The goal is to provide you with insights and strategies that fill you with hope for a brighter, less stressful, and more rewarding future. So let's start down the path of a life defined by your terms.
Understanding Self-Advocacy
It's essential to first grasp the fundamentals of self-advocacy and why it holds such significance in the lives of autistic individuals.
Defining Self-Advocacy
At its core, self-advocacy is the art of speaking up for yourself, asserting your needs, and making choices that align with your personal values and goals. It's about steering the direction of your life and ensuring that your voice is not only heard but respected.
Because the world was not built with the needs of neurodivergent adults in mind, self-advocacy is a vital tool for navigating a world that may not always understand the unique experiences, challenges, and strengths that come with autism. It's a means of actively participating in decisions that affect your life, from healthcare and education to employment and relationships.
Breaking Free from Dependence
Self-advocacy stands in contrast to the notion of dependence on others for decision-making and problem-solving. While seeking guidance and support from trusted individuals can be valuable, self-advocacy emphasizes your ability to take charge of your own life.
It's important to recognize that self-advocacy is not about rejecting help or shutting others out. It's about participating in a collaborative approach where your input is central to the decision-making process. It empowers you to make choices that impact your life while acknowledging the needs, perspectives, experience, and expertise of others.
Real-Life Inspiration
To illustrate the power of self-advocacy, we can draw inspiration from stories of autistic adults who have utilized this concept to transform their lives. These are real stories from Thrive Autism Coaching clients, but their names have been changed.
Carrie’s workplace accommodations:
An autistic woman, Carrie used self-advocacy to secure reasonable workplace accommodations, such as noise-canceling headphones and the ability to take breaks when her sensory system was overwhelmed. Her advocacy not only improved her job performance but also paved the way for a more inclusive work environment for others.
Evan’s independent living accommodations: An autistic man living independently, Evan faced challenges in managing daily tasks such as meal planning and having the right food in the house he needed when he was hungry. With the support of his autism life coach, he advocated for getting access to a meal delivery service that would deliver one healthful meal a day that he didn’t have to cook while leveraging no-cook options for other meals. By advocating for himself, he gained the ability to lead a healthier, more self-sufficient life, and increased his energy level throughout the day through more regular nutrition.
Tamara’s education accommodations: An autistic college student, Tamara advocated for exam accommodations. Through open communication with professors and disability services, Tamara ensured that her learning environment was conducive to her success, and she got extra time needed to complete tests. She knew the material. It just took her a bit longer to take the tests. Her grades went up almost immediately, and she had the strongest semester of her life.
Devin’s social and sensory accommodations: An autistic adult visiting family for the holidays, Devin was feeling overstimulated by all the frequent socializing with family and friends. They decided some alone time was needed to calm their sensory system, but their dad was wondering why they were isolating themself. Devin explained that they were doing alone time because they were overstimulated, and Dad responded, “Okay, just keep in mind you don’t see these people often, but take your time.” This allowed Devin to feel totally accepted by their dad and comfortable while taking the time needed to calm their system before returning to socializing.
These stories illustrate the potential of self-advocacy to improve one's quality of life rather than suffering through others' expectations. They demonstrate that by embracing and implementing self-advocacy, autistic adults can overcome barriers, access opportunities, and shape their lives according to their unique needs and aspirations.
Identifying Your Needs
In this section, we'll walk through the essential step of understanding your own needs and setting clear goals. This self-awareness and clarity on what you want and need is the foundation of self-advocacy so you know what to ask for. Here is what the three-step process looks like.
1. Engage in Self-Reflection
Start by taking the time to reflect on your unique strengths and challenges as an autistic individual. Consider what aspects of your life may be affected by your neurodiversity, such as communication, sensory sensitivities, or executive functioning.
Think about your values and preferences. What matters most to you? Are there specific situations or environments where you feel most comfortable and fulfilled? Are there others that are just completely not working for you?
Then think about your goals and aspirations. What do you envision for your future? These can be personal, professional, or a combination of both.
You can't do everything at once, so spending this time in self-reflection will guide your advocacy efforts and help you prioritize where to start.
2. Identify Your Goals
Now that you have some ideas about what is most important to you and awareness of where the gaps are, it’s time to set some goals that will improve your quality of life. As soon as you start to do this, you are likely to wonder if what you are asking for is actually realistic or if you are worthy. I assure you that you are!
It might help to seek input from trusted friends, family members, or professionals who understand autism and totally “get you.” They can provide valuable insights and perspectives that may help build your confidence that you deserve what you are asking for.
3. Create a Plan
Now that you know what you want, it’s time to create a plan. Acknowledge the challenges and obstacles you face. Be honest with yourself about areas where you may need additional support or accommodations. Identifying these challenges is the first step in addressing them effectively.
Then identify who you are going to speak with and exactly what you are going to say. If you are new to advocating for yourself, it might help to bring in others to help, like your support people.
As an autism life coach, I often help clients write the actual script for what they are going to say. They can then practice this with me or other safe people before they have the actual conversation.
Whatever you say needs to take the other person’s perspective into account, so try to build this into the plan. For example, if you are asking for accommodation at work, think about how the accommodation will impact your employer and try to point out how the accommodation will not hurt them or how you can compensate in another area of the job.
The other person might need some education in order to better understand your request. You could say something like, “As an autistic and ADHD individual, the noise in an office environment is extremely distracting to me. My brain just cannot filter out the extraneous noise. It would help a lot if I could wear noise-canceling headphones while I work at my desk.”
You can say, “It would really help me if I could take a five-minute break at the top of each hour to reset my brain rather than waiting for one 15-minute break after two hours. This will help me focus more consistently throughout the day and do a higher quality job.”
By taking the time to know yourself better and defining your needs and goals, you lay a solid foundation for effective self-advocacy. This clarity will empower you to communicate your needs confidently, make informed decisions, and work toward a future that aligns with your vision for a fulfilling life.
Building Effective Communication Skills
Effective communication is a cornerstone of self-advocacy. It's about expressing your needs, preferences, and boundaries clearly and respectfully, in a way that doesn’t trigger defensiveness in other people.
Here, we'll explore what good communication in self-advocacy looks like.
Clarity and Conciseness
When expressing your thoughts and needs, strive for clarity and conciseness. Use straightforward language to convey your message without unnecessary complexity. You may need to plan in advance what you want to say and how you are going to say it. This helps ensure that others understand your intentions and needs.
Active Listening
When you advocate for yourself, you will also need to keep the other person’s perspective in mind because a win-win situation creates the most enduring changes. The way to do this is through active listening. You can start practicing active listening by paying close attention to what others are saying and show that you're engaged in the conversation by nodding, making eye contact (if possible), and asking clarifying questions when needed.
Nonverbal Communication
Nonverbal cues, such as body language and facial expressions, play a significant role in communication, sometimes even more than the words you use. Be mindful of your own nonverbal signals, and work to learn to interpret the nonverbal cues of others. This awareness can help you navigate the self-advocacy conversation more effectively.
Self-Confidence
Confidence in your own voice is crucial. Believe in the value of your thoughts and opinions. Remember that your perspective as an autistic adult is valid and worthy of consideration. If you are struggling with this, lean on the people who support you. They can give you a reality check on your situation and increase your confidence that what you are asking for is important and valid.
If social interactions are challenging, consider seeking out social skills groups or therapies that can help you improve your social communication skills, such as autism life coaching with Thrive Autism Coaching. Finding a supportive environment for learning and practicing social interactions can be a game changer.
Self-Expression
Consider how you best express yourself. If expressing yourself in conversation feels too challenging, you can try setting the stage that what you’re about to say is difficult to communicate and ask for the other person’s patience while you try to get all your thoughts out. Depending on the complexity of the topic, you can also try using written or text communication, visual aids, or assistive technology.
Handling Rejection
Even when you do all the planning in advance for what to say and how to say it, misunderstandings may occur, or the person might not agree to your request. Instead of feeling discouraged, view this as an opportunity to learn from the experience. If your attempt at self-advocacy is unsuccessful the first time, you can rethink your strategy and try again at another time.
Conclusion
On the path toward greater self-advocacy for autistic adults, we've discussed the fundamental concepts, challenges, and practical strategies that pave the way to greater self-sufficiency and a better quality of life. It's essential to recognize that self-advocacy is not a one-time endeavor but an ongoing process.
Remember these key takeaways:
Self-awareness is key. Knowing yourself, your needs, your strengths, and your aspirations is the foundation of effective self-advocacy. It empowers you to communicate your preferences confidently and make informed decisions.
Effective communication is your bridge. Building strong communication skills enables you to express your needs, preferences, and boundaries clearly and respectfully. This skill is central to self-advocacy success.
Seeking support is a sign of strength. Don't hesitate to reach out for assistance, whether from professionals, peers, or support networks. No one was meant to do life all alone. Your goal is not total self-sufficiency, but rather successful interdependence. The support of others is a valuable resource.
Improved quality of life is your destination. Self-advocacy is not a one-time event. It’s a continuous process of becoming aware of what you need, creating a plan for advocating, implementing the plan, and then trying again if things don’t go your way. In the end, if you stick with it, the path can lead to a quality of life that may be unimaginable today.
As you continue your self-advocacy efforts, remember that your wants, your needs, and your goals are unique to you – and you deserve the quality of life you're imagining. Embrace your individuality and celebrate your successes along the way, no matter how small they may seem because these successes can buoy you when the inevitable setbacks happen. With determination, self-compassion, and a commitment to self-advocacy, you have the power to shape a future that aligns with your vision, leading to a more fulfilling life.