(from founder Earth Schwartz):
I’m sure you are excited to learn about this process and how it all works! Below is an outline of the project experience and some FAQs, so you or your family member know what to expect if you choose to join the project.
Why the name, “Identities of Autism?”
I wanted to keep it clear and accessible. I wanted autism and identities to stand out as powerful words in a time where terminology matters. Marginalized communities continue to struggle to be seen and heard and included as equals. I feel it’s imperative to give light to the differently-abled community by making space for them to define their identity as we examine neurointersectionality.
What’s the history behind IOA?
Identities of Autism began out of my love for working with the autism community over the last 20 years and my desire to show the world just how incredible autistic people are. This passion project celebrates the gifts, differences, abilities and experiences of the autistic community. I want autistic individuals to feel accepted and honored for being exactly who they are, differences and all. I intentionally chose photography as the medium so non-verbal or non-communicative autistic self-advocates have a way to express their identity even without words or spoken language. The camera captures their identity just be being themselves.
I sought out the talented photographer, Sarah Deragon, not only for her powerful and moving photography but because she too, believes in giving individuals a space for creative expression and knows the power behind identification. Together, we are supporting autistic visibility. Identities of Autism’s first photo shoot took place in 2019 at The Inclusion Festival, a sensory-friendly music and art festival in Petaluma, California.
Who is invited to be part of this project?
ALL autistic individuals and self-advocates, both children under 18 and adults. Any child under 18 must be accompanied by their legal caregiver/guardian. Autism families are also welcomed to participate.
Can non-autistic individuals participate in this project?
Neurodivergent individuals that do not identify as autistic may have their picture taken and a photo will be shared with them for their own personal use. However, at this time we are only representing the autistic-identifying community in the project. We hope to expand beyond autistic representation in the future.
How can I participate in Identities of Autism?
By signing up for our newsletter you will be added to our mailing list of interested participants. When we post or send out information about upcoming photo shoots, you can register online via the link posted on the website or in the email directly. All requests are handled on a first come, first served basis. All contact regarding participation in the project will be through email.
How do you choose participants?
Participants are selected on a first come, first served basis. We reach out to a variety of establishments, organizations, advocacy groups and community members to offer an opportunity to participate. Should you know of organizations, advocacy groups or events that would be a good fit for IOA, feel free to recommend us or send us an email with your suggestions. We are taking this project global, so no destination is too far!
If you have an event you would like IOA to be a part of, please contact us at firstname.lastname@example.org
How can I follow IOA or share with friends?
When are the next photoshoots?
How can I prepare for the photo shoot?
If you sign up beforehand, we will schedule you in and send you an email with information on what to wear, what not to wear and what to expect.
Wear comfortable clothing.
Photos are in black and white; less busy prints photograph best.
We suggest practicing some of your favorite poses and facial expressions in the mirror. It makes for better photos and can help you to feel more comfortable at the shoot.
Review the “What can I expect during the photo shoot” question.
Stay tuned for a visual story of what to expect at the photo shoot!
Do I have to smile or look at the camera?
Nope! IOA strongly stands behind autistic individuals being their most natural selves in front of the camera. This means, if you don’t want to make eye contact, you don’t have to. If you don’t want to smile, don’t. If you want to stim, stim.
Be you- exactly as you are!
What can I expect during the photo shoot?
You will arrive at the session and be greeted by one of the photo shoot organizers. You can also introduce yourself when you’re ready.
You can either sign up for a specific time or wait in line until it’s your turn.
There will be photography equipment; a big light that flashes, a 9-foot roll of paper for a backdrop and a camera. You’re welcome to observe first while you check out the set up.
Then you fill out a photo release form and choose the terminology you identify by or 3-5 adjectives that describe what you like about yourself! There will be a list of words available for you to look at to get some ideas. We welcome you to add your words to our list!
Next, move into the photo shoot area to meet our photographer, Sarah. She’s incredibly friendly and does a great job at helping people to feel comfortable in front of the camera.
Sarah may ask you to sit on a stool, stand or try different poses.
You can choose to smile or not smile. You can make eye contact with the camera or not. Best of all, you can wear whatever you feel comfortable in! Most important; be you!
Taking your photos will last 5-6 minutes. If you need a break, just let us know.
After this, we are finished and say goodbye.
A few weeks after the photoshoot, you or your parent/guardian will get a high resolution .JPG of one of your photos!
Is the photo shoot a sensory-friendly space?
We do our best to be mindful of creating a sensory-friendly space. If you have any specific needs, please let us know ahead of time so we can support you and provide accommodations when possible. Once we know where the photo shoot is happening, we will provide as much information as possible regarding the space ahead of time so you can prepare.
Will I feel safe to be myself at an IOA photo shoot?
IOA fosters a space where participants can fully express themselves without fear of being made to feel unwelcome or unsafe. We welcome people of all races, ethnicity, sexual orientation, religion, size, gender expression, immigration status, socio-economic background, mental health and ability.
What happens after the photoshoot?
We will email you a digital copy of your photos. Also, be sure to check the website or our social media sites for new postings of the most current photoshoot.
My child is non-verbal or non-communicative. May I say words for them?
While we greatly support and recognize the hard work of parents/caregivers, this is a space where we want to hear from the individual. IOA encourages self-identification in whatever form works best for that person. Family members are encouraged to use terminology that represents their experience as an autism family only.
Can I express my identity visually without the use of any words?
What can I do with the digital photos I’m sent?
You are welcome to use them as you wish. Please make sure to give photo credit to Sarah Deragon and Earth Schwartz @ Identities of Autism
What is neurodiversity?
Neurodiversity is the belief that the brain is not necessarily abnormal or damaged but rather different, presenting with alternate neurological wirings. These neurological differences are to be recognized and respected as any other human variation. This applies to conditions such as Autism, ADHD, Dyslexia, Tourette Syndrome and other diagnoses. Advocates celebrate varied forms of communication and self-expression and promote supporting systems that allow for individuals with differences to live freely and proudly because of their very differences. Adopting a neurodiverse lens moves away from the focus on the weaknesses of an individual and towards their strengths and abilities.
There are many definitions of neurodiversity. Here is how one self-advocate, Patrick Dwyer defines it:
“There is no single, perfect ideal of what a human mind or brain should be: that, on the contrary, the existence of diversity of minds and brains is necessary for human societies to flourish.
Autistic and other neurodivergent people should be accepted for who they are, and that making neurodivergent people more ‘normal’ should never be pursued as an end in itself.
The challenges and barriers faced by neurodivergent people cannot be solely attributed to internal differences or ‘deficits,’ but that these challenges can reflect problems in the ways that human societies interact with neurodivergent people.”
Identity-first language vs. Person-first language?
Those that prefer identity-first language believe that autistic individuals present with human variation of difference, not necessarily a disability. Rather, autism is viewed as a condition that cannot be separated from the person. Their autism is an inherent part of their cultural identity; it is what defines them.
Those that prefer person-first language see the person as a whole before their disability. Many believe that their autism is only a part of them. (http://www.larry-arnold.net/Autonomy/index.php/autonomy/article/view/OP1/html_1)
Identities of Autism honors and respects the decision of however each individual prefers to identify.
Autism isn’t something a person has, or a ‘shell’ that a person is trapped inside. There’s no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person–and if it were possible, the person you’d have left would not be the same person you started with.”
-Jim Sinclair, 1993 (http://www.larry-arnold.net/Autonomy/index.php/autonomy/article/view/AR1/html)
“Difference is beautiful”