Here is our co-founder Dr. Gizem Tanol’s interview with University of Minnesota, College of Education and Human Development (CEHD) for autism awareness month:
To highlight the growing need for awareness about autism, each April the Autism Society celebrates National Autism Awareness Month—an opportunity to educate the public about autism and autism-related issues within the community.
As CEHD shared last week, I was recognized as one of the CEHD 23: Rising Alumni which highlights the work of 23 alumni across CEHD’s eight departments.
I co-founded the non-profit, Autism Friendly Spaces, in 2011. Based in New York City, our mission is to enhance the quality of life for those with Autism Spectrum Disorders (ASD) and their families. We work to create opportunities for families to participate more actively in the community, and work to make spaces such as Broadway shows, restaurants and museums more acceptable and enjoyable for families. Groups and organizations we’ve partnered with include the Metropolitan Museum of Art and the Intrepid Sea Air and Space Museum and Broadway shows like the Lion King, Mary Poppins and Spider-Man: Turn Off the Dark.
There are many events and outings (like going to the playground or a museum) that many often take for granted, but are challenging for families who have children with autism. Our goal is to help these families have a better quality of life by allowing their children to better engage in their communities, and therefore improve the quality of life for the whole family.
What makes spaces autism friendly
We start with a “needs assessment” of the space to learn which environmental factors may be problematic (such as long wait times or audio/visual over-stimulation). We then suggest modifications and places within these event spaces that can be used as a calming area if children are having a difficult time, to give them to opportunity to take a short break if necessary. This helps them self-regulate during the activity.
We also train the staff—including security guards, museum staff and performers—on ASD basics and what to expect. We help staff understand the challenges families may face while visiting, possible triggers for problem behaviors and different strategies to help families. We develop customized, evidence-based supports to provide to families prior to visits and during the visits. Some examples of these supports are social narratives specific to the event (e.g., going to the museum, waiting in the lines), visual supports (such as task analysis cards with visuals, If/then cards etc.) We also train and coordinate volunteers who help during all events.
5 Tips for Families
Here are a few ways families can help make community outings easier to manage and more enjoyable for children or adults with ASD:
1. Research: If you don’t find information on the location’s website, call and ask to speak with the contact for the accessibility program to find out what alternative accommodations are available.
If there is little support, ask if there are quiet sections or low-traffic areas where your family can take short breaks for self-regulation or possible times of the day that has less traffic.
2. Prepare your child for activity: Individuals that are on the autism spectrum tend to thrive on predictable routines and clear expectations, therefore it is crucial to start priming your child prior to your visit. Since it will be a departure from predictable routines, share expectations and prime your child prior to the visit. Priming can include going over the routine for the day of the event with the support of pictures/videos of the upcoming event, or going over the expectations and strategies your child can use (such as modeling & practicing how to ask for a break).
3. Before you go: Pack a “bag of tricks” with items such as noise cancelling headphones or special snacks if there are dietary restrictions. Think about strategies/materials that support your child to self-regulate and take these tools with you to the community setting.
4. Breathe and stay calm: This may be most important. Success will come in small steps, so go slowly, look for rumbling (agitation) behaviors and take short breaks in between. You may need to try attending the event a few times before your family member can fully participate. One family we worked with came to two shows—the first time sitting in our activity area in the lobby to listen to the show, and the second being able to fully attend the show with other families and guests. Next up this family is attending Spiderman on Broadway! So taking small steps is very important.
5. Focus on the Positive: Focus on your child’s success. Make sure to praise your child for waiting nicely, keeping a calm body and using self-regulation strategies. Try to take lots of pictures of your child and his/her siblings! These are great memories and they can also be used as visual supports when you’re priming your child for future community events.
We’re proud to help actively transform communities. Visit Autism Friendly Spaces if there is a location in New York City you’d like to see become autism friendly, or if you’re a New York City business owner who would like to make your space autism friendly.