A Sister's Perspective

​Growing up with two brothers with severe autism, Victor and Max, has profoundly shaped who I am. Witnessing their unique challenges has brought forth a mix of emotions—guilt, helplessness, and an overwhelming sense of responsibility. I’ll never forget the first time I saw Victor engage in self-harm. I was devastated, confused, and didn’t know how to help. Over the years, such difficult moments became part of daily life, but so did the deep love and unspoken connection we’ve built.

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Through my brothers, I’ve discovered the power of non-verbal communication. What most people take for granted—like having a simple conversation—are things my brothers work incredibly hard to express in their own way. Those small gestures of connection mean the world to me. Their presence in my life has not only taught me how to listen with more than just my ears, but to also understand people on a much deeper level.

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Despite the struggles, Victor and Max have given me a tremendous sense of purpose. They’ve made me a fierce advocate for those who cannot speak for themselves, fueling my drive to increase awareness and understanding of autism. While I don’t share their diagnosis, autism is interwoven with my life every single day. My brothers have made me a more compassionate, thoughtful, and resilient person, and for that, I am forever grateful.

Advocating for a sibling with autism is a meaningful and empowering role, and there are several ways you can make a positive impact.​

Educate yourself and others

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• Learn about autism: Dive deep into understanding autism, its various presentations, and the unique challenges faced by your sibling. Being knowledgeable helps you become a better advocate and educate others effectively.

• Raise awareness: Share your experiences and knowledge with others—friends, family, and the broader community. Challenge misconceptions and help others better understand autism by encouraging open, empathetic conversations.

Be an ally in everyday life

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• Support in social situations: Help your sibling navigate social interactions. This might mean gently explaining their needs or behaviors to others who don’t understand.

• Respect their individuality: Acknowledge their preferences, strengths, and challenges. Advocate for their choices, ensuring they’re included in decision-making processes.

• Model compassion: When others make assumptions or negative comments, stand up for your sibling. By calmly addressing these situations, you can help shift perspectives.

 

Help them access services

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• Research services and resources: Find support networks, therapists, and programs that might benefit your sibling. Advocate for their inclusion in school, community activities, or special services they may need.

• Assist with transition planning: Whether it's transitioning from school to adulthood or from one level of care to another, you can be instrumental in making sure they receive the proper support and opportunities.

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Be their voice

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• Advocate in school or healthcare settings: Work with educators or healthcare professionals to ensure your sibling's needs are met. If they have an Individualized Education Plan (IEP) or therapy goals, your input can help advocate for accommodations and interventions that best serve them.

• Empower their independence: Support your sibling’s self-advocacy skills. Encourage them to speak up for themselves in situations where they can, and assist them when they can’t.

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Advocate for policy changes

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• Support autism-related legislation: Get involved in advocating for policies that improve access to services and rights for individuals with autism. Contact local representatives, participate in advocacy campaigns, and join autism-focused organizations to make a broader impact.

• Join or create advocacy groups: Participate in autism awareness and advocacy organizations. Sharing your family’s story can inspire others and create momentum for systemic change.

Foster inclusive environments

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• Encourage acceptance in social spaces: Work with schools, community centers, and workplaces to promote inclusive environments for individuals with autism. Whether it’s encouraging sensory-friendly spaces or training staff, your advocacy can make everyday places more accommodating.

• Build social networks: Facilitate opportunities for your sibling to form friendships and social connections, whether by organizing social events or finding inclusive programs where they feel welcome.

Self-care and strengthen family bonds

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• Take care of yourself: Advocacy can be emotionally demanding. It’s essential to care for your own well-being to remain effective. Join support groups or counseling to connect with other siblings of individuals with autism who share similar experiences.

• Strengthen family communication: Work with your parents and other family members to ensure everyone’s needs are addressed. By fostering open dialogue, you can ensure the entire family is on the same page regarding your sibling’s care and advocacy.

Celebrate their achievements

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• Highlight their strengths: Focus on and celebrate your sibling’s unique talents and achievements. This positive reinforcement not only boosts their self-esteem but also helps others see them as more than their diagnosis.

• Support their interests and goals: Advocate for their personal interests, whether it’s enrolling in a class they enjoy, supporting a hobby, or helping them pursue vocational or educational goals. Being an advocate for a sibling with autism involves a balance of understanding, patience, and love. Every effort you make contributes to creating a more inclusive world for your sibling, and by standing by them, you're also inspiring others to do the same.

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