SELF-ADVOCACY
Communicating and speaking up for one’s own personal interests, needs, and rights.
SELF-DETERMINATION
The authority and freedom of an individual to make decisions on their own behalf; the ability to exercise control over one's life.
What is advocacy, and what does it mean to be an Autistic Self-Advocate?
Usually what comes to mind when someone thinks of “advocates” are often outspoken individuals who champion for change within our society or in the political realm. However, advocacy doesn’t always have to be on such a large scale. Advocacy means standing up for a cause, whether that’s advocating for your right to accommodations at work, advocating for accessible programs at your local community center, or advocating for better inclusion and acceptance amongst friends and family.
There is often an emphasis on the terms “self-advocacy” and “self-determination” within the developmentally and intellectually disabled communities. Historically, the family of Autistics and medical professionals have spoke on behalf of Autistic people, rather than letting Autistic people speak for themselves and decide what’s right for them. This is still often the case today. “Self-advocate” is a distinction that notifies that a member of the Autistic community is asking for a change on their own behalf.
Being a good advocate means knowing what you’re entitled to, knowing your rights, and ensuring your own comfort and well being. Being an advocate can be making small changes in your personal life or within your community, which will radiate to the rest of society.
RESOURCE: Self Advocacy Association of NYS
SANYC has a variety of resources, including training on general self-advocacy, knowing your rights, and more!
Contents:
Advocacy Within Your Personal Life
Disclosure, Accommodations, and Handling Discrimination
Advocacy in Your Community
Organizing and Reaching Out to Local Organizations
Advocacy on a Large Scale
Pushing for Political and Societal Changes
Advocacy Within Your Personal Life
Disclosure, Accommodations, and Handling Discrimination
Disclosure:
Many of us in the Autistic Community are able to mask and not disclose our autism diagnosis to others. Just being open about your diagnosis is a form of advocacy. However, it’s important to do so in a safe space, ensuring you won't be subjected to harm or discrimination.
What are the pros and cons of disclosing?
Pros -
Being openly Autistic allows you to communicate your needs, including accommodations at work or school, and can help you better explain your needs within social situations.
Disclosing to others increases visibility of what autism looks like. Others may have a limited view of what Autistic people can look like, and knowing that their friend/colleague is Autistic can open up their worldview.
Disclosing can allow you to feel comfortable within your friend groups and at work. It allows you to unmask and be open about who you are.
Cons -
Being openly Autistic can open you up to discrimination, bullying, and harassment.
Accommodations:
Advocacy is knowing what you’re entitled to. Here are some possible accommodations you can ask for at school and work:
School -
You often will have to work through your school's disability center and show a medical diagnosis of autism to get accommodations. They will communicate directly with your professors on what your needs are, without disclosing what your specific diagnosis is.
Examples of possible accommodations:
Extended time for test taking
Having someone to help take notes during classes
Receiving written instructions in class, rather than relying on verbal instructions
Access to sensory-friendly spaces
Residential accommodations, adaptable spaces, single occupancy dorms
Academic coaching or counseling for Autistic students (if your school offers this)
Hybrid learning model, mix of virtual and in-person classes
Handbook from ASAN about accommodations at school, navigating college, and more.
Work -
For accommodations at work, reach out to your employer's HR department. If you’re at a small workplace without HR, talk to your supervisor. They are legally required to provide reasonable accommodations for your disability (If your request is denied, see below on “discrimination”).
Examples of possible accommodations:
Alternative work environments
Schedule flexibility
Additional time for tasks
Daily check-ins for feedback
RESOURCE: Accommodation and Compliance: Autism Spectrum (JAN)
This resource is directed towards employers as well, but has a list of several possible accommodations.
Discrimination:
What does discrimination look like?
Discrimination isn’t always clear cut. It can look like being asked specific questions about your disability during an interview, having policies that indirectly disadvantage people with specific disabilities, or denying your request for accommodations. The resources below provide many examples on what discrimination can look like in the workplace.
Identifying Discrimination -
RESOURCE: Types of Disability Discrimination at Work | DavidsonMorris
How to Protect Yourself and Report Discrimination -
Contact HR, document your diagnosis and any complaints.
It’s important to have documentation that your employer was made aware of your disability and any discrimination related complaints you raised.
Get everything in writing!
Document any conversations between you and your employer. If you decide to pursue legal action, the evidence will be very useful to an attorney, rather than just relying on accounts of your verbal conversations. This includes emails and texts as well. If you experienced discrimination verbally, it’s a good idea to follow up, in writing, summarizing conversations and confirming on both sides what was discussed. (Example, “Thank you for meeting me yesterday to talk about my request for accommodations. Just confirming that during this conversation you said…”)
Take legal action if needed:
Make a complaint with the the Equal Employment Opportunity Commission before pursuing any legal action.
RESOURCE: DISABILITY RIGHTS NEW YORK
A good resource, DRNY provides free legal services for the disabled. Contact them to see if they can help you with your specific situation.
Relevant fact sheets from DRNY:
RESOURCE: CIDNY - Addressing Noise Complaints, Harassment, and Housing Discrimination
Advocacy in Your Community
Organizing and Reaching Out to Local Organizations
Organizing:
Organizing events or groups within your community, including in your workplace and at school, can bring about acceptance and understanding of autism. Additionally, organizing events for Autistic people can foster a sense of community, allowing us to learn from other Autistics and feel validity about our experiences. Learning from the experiences of peers can make individuals more confident in asking for accommodations and fighting for what they are entitled to.
School -
Consider joining an autism, neurodiversity, or disability group at your school! If your university doesn’t have one, find some peers or reach out to a trusted faculty member to see if they’ll support you in starting your own.
Work -
Joining your work's diversity committee, doing a presentation on autism, or talking openly about the benefits to neurodiversity are all ways you can advocate in your workplace, and positively change the company culture.
Community -
Look for social or advocacy groups for Autistics in your area. If there isn’t anything near you, consider starting your own group. If you’d like to start a group in your community and have specific questions, or need help organizing events, please reach out!
RESOURCE: Starting and Supporting Self-Advocacy Organizations
Advocating for Changes Within Your Community:
Public programs can be inaccessible to many of us, often due to sensory overload concerns. However, this is something you can relatively easily advocate for in your own community! Most organizations have a contact page on their website. If there’s any planned events or ongoing programs you find interesting, yet inaccessible to you or other Autistics, you can reach out. Let them know you're a member of the community interested in a program but are unable to attend due to accessibility concerns, and ask if they’d be open to having a “sensory friendly” day in the future.
Examples of Sensory Friendly or Accessible Programs -
Lightscape Quiet Hours | Brooklyn Botanical Garden
“These special early hours are designed for adults and children with disabilities or sensory sensitivity who would like to experience Lightscape without the usual high volume of people. Quiet Hours take place at twilight before Lightscape opens to the public, making the transition into the dark much easier.”
Adaptations | Marlene Meyerson JCC Manhattan
“Adaptations is a dynamic, supportive, social community for adults at the Jack and Shirley Silver Center for Special Needs (CSN) at the Marlene Meyerson JCC Manhattan. Through structured social/recreational and employment programs, Adaptations provides multiple pathways to fostering independence, finding your passion, and experiencing the richness of community.”
TDF Autism Friendly Performances
“TDF Autism Friendly Performances present Broadway musicals and plays in a friendly, supportive environment for children and adults who are diagnosed with an autism spectrum disorder or other sensitivity issues and their families and friends.”
Advocacy on a Large Scale
Pushing for Political and Societal Changes
Politics:
RESOURCE: Civic Engagement Toolbox For Self-Advocates
If there are any specific political issues that speak to you, and you’d like to get involved in the political realm, this is a great resource from ASAN
RESOURCE: City Council Calendar
The New York City Council has its calendar for meetings available online. Through this link you are able to check the agenda of each meeting. You can register to submit testimony here - Hearing Testimony Registration - New York City Council
Protesting:
If you’d like to protest, there are a lot of rules and regulations in place in NYC. For example, if you are gathering more than 20 people in public park, you’ll need a special event permit through the NYC Parks Department. If you’re planning to use any sound amplification, you will need to apply for a sound device permit through the NYPD at the precinct your event is in.
RESOURCE: YOUR RIGHTS TO DEMONSTRATING IN NEW YORK CITY | NYCLU
Petitions, Open Letters:
Writing an open letter signed by different individuals or organizations is a good way to show solidarity. A great example - Open Letter on legal action against trans healthcare for autistic adults.