Recently a local autistic child went missing from his home, his mother is a friend and part of our local Special Education group. Our phones immediately began ringing with people asking what to do, most of whom were already in their cars and on foot looking for him. The quickness in how the community, in partnership with first responders, mobilized had much to do with how quickly he was found and brought home safe.
The questions that came up over and over were "What do I do? What can I do? What do I need to know?" It has prompted us to write this post for the next time this happens in our community and beyond - because it will happen again to someone, somewhere.
There is a saying: if you have met one person with autism, you have met one person with autism - that's why it's a spectrum.
However, there are often common needs that come up in these situations that can be helpful and while this is not a complete list, this is a starting point for information to be sure to share and steps to take:
1.) Have all the descriptive information and location information ready. Consider developing a one-sheet about your child to have on hand just in case.
2.) Identify if the child is verbal, nonverbal, or has limited verbal skills to first responders right away. Does the child respond to unfamiliar adults? What are the child's fears or fear responses?
3.) Let search crews know what the child likes. This is very important. Children on the autism spectrum are often very specific about what they like, gravitate to, fixate/focus on. This information can help find them and can help keep them calm when they are found and are scared.
4.) If you are the one gathering information, ask if the parent/family if the person prefers people first language or identity first language. While this seems like a small detail in an emergency, this actually matters. Some individuals on the autism spectrum prefer people first language and some view autism as a part of their identity and prefer to be referred to as an autistic person. It's important to use the language that the person self identifies with and prefers, and it's important to honor that self determination. Family members giving the missing persons information can advise on this as they know the person best.
5.) If you are a neighbor or a community member that wants to help search, drop what you are doing and go out and look on foot, bikes or in cars. Bring flashlights if it is night time.
6.) IMMEDIATELY search any and all areas where there is water: creeks, ponds, lakes, rivers, swimming pools.
***From the National Autism Association: Drowning is among the leading causes of death of individuals with autism. Roughly half, or 48%, of children with an ASD attempt to elope from a safe environment, a rate nearly four times higher than their unaffected siblings. Accidental drowning accounted for 91% total U.S. deaths reported in children with an ASD ages 14 and younger subsequent to wandering/elopement. These are alarming and notable statistics.
7.) Stay in communication: family, first reponders and social media alerts. Bring your phones and share accurate and verified information only.
8.) If you find the child, secure him/her but do so gently (unless they are in immediate danger, in which case just secure the child quickly and safely) and alert the search agency or call 911 immediately. Stay with the child. Speak with the child in a calm voice, try to chat about the things you know they like. Even if the child is non-verbal this is a good strategy to help keep them calm, safe and occupied until a parent/caregiver arrives. It's scary to be lost, so talking about the things they really like is stress reducing. Individuals with an ASD often have unique sensory needs - what is loud and/or scary to them may not even be noticeable to you, so nice gentle tones while chatting about their interests is helpful. This is why it is important in the description of the missing child to also list their interests/preferred focus.
9.) Support the families and DO NOT shame or chastise or blame. It only takes a minute for a child to disappear and parents sometimes have to go to the bathroom (yep, we do that!), or switch the laundry or cook dinner in the kitchen, and things happen and are not anyone's fault. I promise you, as parents of children with disabilities, we feel more guilt and chastise ourselves and doubt ourselves more than anyone else ever could. We are often our own worst critics.
Support the families. Remind them the community is out there looking for their child and the community is supporting them. When the child is found just remind them he/she is safe now and it's going to be okay.
10.) Support your Special Education programs in the schools and local organizations and parent support groups. Advocate for children with disabilities and support their independence as they grow and help created inclusive communities.
Most of all, talk to one another, know your neighbors and foster as much community as you can. Create a private Special Education Community group on Facebook and develop a close community where you can communicate quickly. We have that in our community and we noticed that helped mobilize the community so quickly and were able to get this child home safe and sound.