Advocacy, Rights & Self-Advocacy

Personal Self-Advocacy

• **Right to accommodations** at work and in education
• **Right to healthcare** that is informed and respectful
• **Right to communication** in your preferred format
• **Right to refuse treatment** you do not consent to
• **Right to privacy** about your diagnosis
• **Right to make your own decisions** about your life
• **Right to live independently** with appropriate support

• **Know your diagnosis** — understand your support needs
• **Document everything** — keep records of accommodations, agreements, incidents
• **Written requests** — put accommodation requests in writing
• **Use scripts** — prepared statements for common advocacy situations
• **Bring a support person** — to meetings about your needs
• **Name the law** — referencing specific legislation strengthens your position
• **Escalate calmly** — complaint procedures exist for a reason

Legal Rights by Country

• **Equality Act 2010** — autism is a protected characteristic under disability
• **Autism Act 2009** — first disability-specific legislation in England
• **Care Act 2014** — right to needs assessment and support
• **Mental Capacity Act 2005** — decision-making rights
• **Access to Work** — government-funded workplace adjustments
• **PIP (Personal Independence Payment)** — financial support
• **Reasonable adjustments** — employers and service providers must make them

• **ADA (Americans with Disabilities Act)** — prohibits discrimination in employment, services, transport
• **Section 504** — accommodations in education
• **IDEA** — Individuals with Disabilities Education Act for children
• **Fair Housing Act** — housing accommodations
• **EEOC** — Equal Employment Opportunity Commission handles workplace complaints
• **SSI/SSDI** — Social Security financial support
• **State vocational rehabilitation** — job support services

• **Disability Discrimination Act 1992** — anti-discrimination protection
• **NDIS (National Disability Insurance Scheme)** — funded support packages
• **Fair Work Act** — workplace accommodations
• **Disability Standards for Education** — educational support

• **Canadian Human Rights Act** — federal anti-discrimination
• **Accessible Canada Act (2019)** — barrier-free Canada
• **Provincial disability support** — varies by province
• **ODSP (Ontario)** — disability income support

• **EU Employment Equality Directive** — workplace protection
• **UN CRPD** — Convention on the Rights of Persons with Disabilities (ratified by most EU states)
• **National disability laws** — vary by member state

Advocacy in Practice

• **Request formal assessment** of support needs
• **Get accommodations in writing** — EHCP (UK), IEP/504 Plan (USA)
• **Attend meetings prepared** — bring documentation and a support person
• **Record agreements** — email summaries after meetings
• **Appeal decisions** — if accommodations are refused, escalate
• **Parent advocacy groups** — connect with other families for support

• Put accommodation requests in writing to HR
• Reference specific legislation (ADA, Equality Act, etc.)
• Document all interactions about accommodations
• Request occupational health assessment if needed
• Join or form a neurodiversity employee resource group
• If discriminated against, file a formal complaint

• **Bring a written list** of symptoms and questions
• **Request longer appointments** — standard 10-minute slots are not enough
• **Ask for written follow-up** — what was discussed and decided
• **Bring a support person** if helpful
• **You can change your doctor** — you deserve one who listens
• **Diagnostic overshadowing** — push back when everything is blamed on autism

Systemic Advocacy

• **Support autistic-led organisations** — ASAN, Autistic UK, AMASE, I CAN Network
• **Oppose harmful practices** — ABA, Judge Rotenberg Center, seclusion, restraint
• **Challenge cure rhetoric** — autism does not need curing
• **Amplify autistic voices** — share autistic-created content
• **Contact representatives** — about disability policy
• **Support research by autistic researchers** — participatory research methods
• **Boycott organisations** that do not include autistic people in leadership
• **Challenge Autism Speaks** — widely criticised by the autistic community for cure-focused rhetoric and minimal autistic representation

• **ABA (Applied Behaviour Analysis)** — compliance-based, suppresses autistic traits, high rates of PTSD in survivors
• **Restraint and seclusion** — used in schools and institutions
• **Electric skin shock** — Judge Rotenberg Center (still operational)
• **Forced eye contact** — physically painful for many autistic people
• **Social skills training** focused on masking — teaches inauthenticity
• **Chelation therapy** — dangerous, based on debunked theories
• **MMS/bleach "cures"** — child abuse marketed as treatment
• **Quiet hands** — suppressing stims is harmful

• **Identity-first**: "autistic person" preferred by most autistic people
• **Person-first**: "person with autism" preferred by some (respect individual choice)
• **Avoid**: "suffers from autism," "afflicted with," "autistic disorder"
• **Avoid**: functioning labels ("high/low functioning") — misleading binary
• **Use**: "higher/lower support needs" if you need to describe variation
• **Avoid**: "special needs" — our needs are human needs
• **Our symbol**: ∞ gold/rainbow infinity — NOT the puzzle piece