Lived Experience/LIVD ik-SPEER-ee-ents/

Lived experience is first-hand knowledge from personally navigating life as neurodivergent—experiencing the world through a neurodivergent nervous system, facing challenges, discovering strengths, navigating neurotypical-designed systems, developing personal strategies for thriving.

This experiential knowledge includes embodied understanding (knowing what sensory overload actually feels like), strategic wisdom (developing personal accommodations through trial and error), social navigation insights (understanding masking/disclosure dynamics), systemic awareness (recognizing discrimination patterns from encountering them directly), resilience knowledge (what actually helps versus what sounds good in theory), and community wisdom (what neurodivergent people truly need/want/value).

Lived experience provides insider knowledge that cannot be gained through research, observation, or theoretical study alone. It offers authentic perspectives on what works, what helps, and what harms from those who have navigated these experiences.

Within neurodivergent communities, lived experience is the gold standard for understanding and wisdom. "Nothing About Us, Without Us" encapsulates this—decisions, research, services, and policies affecting neurodivergent people should meaningfully include neurodivergent voices and leadership.

This manifests through peer support networks (mutual aid from shared experience), self-advocacy movements (led by those with lived experience, not professionals/families), research collaboration (neurodivergent people as partners, not just subjects), service design (informed by actual users), and policy advocacy (guided by lived experience).

Community members distinguish: professional knowledge (important but limited to external observation), family knowledge (valuable but outside perspective), lived experience (irreplaceable insider knowledge from actually being neurodivergent).

Research increasingly recognizes lived experience value. Studies show: research including neurodivergent partners yields more relevant findings; services designed with lived experience input are more effective; policies informed by lived experience better address real needs; peer support led by those with lived experience shows superior outcomes.

Participatory research recognizes experiential knowledge as valid expertise, leading to community-based research models, advisory boards with lived experience, and funding for research led by those with lived experience. When lived experience is valued and included, outcomes improve across education, healthcare, employment, and community support.

Identity and Language

Many neurodivergent individuals identify strongly with lived experience as valuable knowledge and wisdom: experts by experience, lived experience researchers/advocates, people with insider knowledge, community wisdom keepers, authentic voices. This identity includes both pride in wisdom gained through experience and frustration when dismissed or undervalued. Many appreciate language recognizing lived experience as legitimate expertise rather than mere "personal stories" or anecdotal evidence.

Practical Strategies

Free/Low-Cost Options:

• Document your insights in a private journal or notes app—creates personal reference library and helps articulate wisdom (free)
• Join online neurodivergent communities to connect with others who share similar experiences (Reddit, Discord, forums) (free)
• Practice articulating lived experience in low-stakes conversations to build confidence (free)
• Offer peer support to others navigating similar experiences—validates your wisdom while helping others (free)
• Create social media content sharing lived experience insights (Twitter/X threads, TikTok, blogs) (free)

If Possible:

• Pursue formal lived experience consultant/researcher opportunities (often paid)
• Attend conferences/workshops to connect with broader community and share wisdom
• Seek mentorship from established lived experience advocates
• Consider therapy to process complex feelings about having wisdom dismissed/undervalued

Why This Works: Lived experience is expertise gained through direct navigation of neurodivergent life. Documenting and sharing it validates your knowledge, helps others, and challenges systems that undervalue experiential wisdom. Your insider perspective provides insights professionals cannot access through training alone.

For Families, Schools, and Workplaces

Families:

• Ask neurodivergent family members directly about their needs instead of assuming
• Validate children's lived experience as important knowledge worth listening to
• Include neurodivergent family members in decisions affecting them ("Nothing About Us, Without Us")
• Recognize that lived experience often reveals what actually helps versus what sounds good theoretically

Schools:

• Include neurodivergent students in IEP/504 planning as experts on their own needs
• Create peer mentorship programs pairing younger students with older neurodivergent mentors
• Hire neurodivergent staff/consultants to inform accommodation and inclusion initiatives
• Train educators to recognize lived experience as legitimate expertise, not just "student opinion"

Workplaces:

• Include employees with lived experience in designing accessibility/inclusion initiatives
• Create employee resource groups (ERGs) led by neurodivergent employees with decision-making power
• Compensate employees fairly for lived experience consulting/advising work (don't expect free labor)
• Recognize that neurodivergent employees' insights about barriers are expert testimony, not complaints

Intersectionality

Lived experience intersects with race/ethnicity (Black/Brown neurodivergent people face compounded marginalization—their lived experience includes navigating both ableism and racism, often dismissed even more than white neurodivergent voices), gender (women/girls often have lived experience dismissed as "just anxiety" or "overreacting"), class (working-class/poor neurodivergent people's lived experience includes navigating systems without resources, yet often excluded from middle-class dominated advocacy spaces), and culture (lived experience of neurodivergence shaped by cultural context—what's considered "different" varies across cultures, as do accommodation availability and community support structures).

Myths vs Facts

Myth: "Lived experience is just personal opinion or anecdotal evidence." Fact: Lived experience represents systematic, embodied knowledge gained through direct navigation of specific circumstances, providing insights unavailable through other means.

Myth: "Professional expertise is more valuable than lived experience." Fact: Professional expertise and lived experience are complementary. The most effective approaches combine both.

Myth: "People with lived experience are too close to their situation to be objective." Fact: Lived experience provides essential insider perspectives that outsider "objectivity" cannot access. Both perspectives contribute to complete understanding.

Do's and Don'ts

Do's:

• Recognize lived experience as legitimate expertise worthy of compensation and respect
• Create meaningful partnerships where lived experience voices have real influence
• Value your own lived experience as expertise
• Seek communities where your lived experience is recognized and valued
• Support others with lived experience in having voices heard and respected

Don'ts:

• Treat lived experience as just "nice to have" input or token representation
• Assume professional training gives complete understanding of neurodivergent experiences
• Expect free labor—compensate lived experience consulting fairly
• Dismiss lived experience as merely "anecdotal" or "personal opinion"

Quick Tips

Today:

• Document one insight from your lived experience in notes or journal
• Join one online neurodivergent community to connect with others

This Week:

• Practice articulating your lived experience in one low-stakes conversation
• Read/watch content from other neurodivergent people sharing their wisdom

This Month:

• Consider one way to share your lived experience (social media, peer support, advocacy)
• Explore paid opportunities to contribute your lived experience expertise

Lived experience is also called "experiential knowledge," "expert by experience," or "insider knowledge." The community emphasizes lived experience should be recognized as expertise, not dismissed as merely personal or anecdotal. Effective partnerships involve mutual respect (recognizing both professional training and lived experience as legitimate expertise), shared power (lived experience voices have genuine influence), fair compensation, accessibility, and ongoing relationship.