The tragic deaths of two cherished friends, Feda Almaliti, a co-founder and the former vice president of NCSA, and her beloved son Muhammed, who had severe autism, have raised a number of painful questions in the autism community. Sponsored by NCSA and Autism Science Foundation on October 14, our informal Zoom conversation addressed some of those with family and friends, including:
Maysoon Salah, sister to Feda Almaliti and aunt to Muhammed
Lubna Salah, sister to Feda Almaliti and aunt to Muhammed
Alycia Halladay, friend and Autism Science Foundation (moderator)
Kate Movius, friend and L.A. Found
Navah Paskowitz-Asner and Matt Asner, friends and Ed Asner Family Center
Karen Fessel, friend and Mental Health and Autism Insurance Project
Mizpah Brown-Rich, friend and Joshua's Gift
Jill Escher, friend and National Council on Severe Autism
Amanda Kelly, friend and BehaviorBabe.com
Here is a summary (omitting attributions for the most part). We hope you find this useful, and we plan to continue this conversation aimed at improving safety for all families affected by autism.
Basic precautions and safety technology
It seems that smoke detectors in the Almaliti home did not go off, even though at least one had been checked several months ago. People (and not just autism families) sometimes disable detectors due to annoyance while cooking, and sometimes autistic children can break detectors. Families are encouraged to check smoke/CO alarms, and replace batteries regularly.
Along those lines, consider how new technology might help beyond basic smoke/CO alarms. For example Nest Protect by Google, “The smoke alarm that thinks, speaks and alerts your phone.” https://store.google.com/us/product/nest_protect_2nd_gen
Also there are fire alarms that record a voice, for example SC07CN Combination; Talking Smoke Alarm and Carbon Monoxide Detector. https://www.amazon.com/First-Alert-SCO7CN-Combination-Monoxide/dp/B0002CWXZG. This may be more effective than a standard alarm.
Have a fire safety plan and do regular fire drills with your disabled dependents. For those with severe autism, “the most important thing may be how to get our kids to move in an emergency.” One comment, “My husband and I decided we would threaten to tickle our son (he hates that!). Ultimately, these big guys have to move on their own, that’s the scariest part.” Sometimes people advise actually knocking out the disabled person so he/she can be dragged out. Fires like those that claimed Feda and Mu’s lives happen fast and can kill quickly. Escape needs to be executed very quickly, you don’t have time to think.
Consider what can buy you time, for example, fire blankets, smoke masks, flashlights by the bed. Have fire extinguishers onhand. Don’t forget the basic stop, drop, and roll. Smoke is highly toxic.
A very large, stubborn, and intellectually disabled autistic person like Mu will present immense challenges for a caregiver in a crisis situation. When possible, someone like Mu should be on the first floor. Also consider how medications (for sleep or other conditions) may interfere with alertness.
Talk with local first responders
See if your local fire department can provide guidance or advice re safety plans, or thorny issues such as the locks on windows and doors autism families often use to prevent elopement.
A few commenters encouraged families to register their developmentally disabled loved ones with local emergency responders, including police and fire departments, explaining the nature of their disabilities .
See if you or others can offer autism training to local police and firefighters on how to interact/be aware of the challenges of our children with autism (communication, de escalation, pairing etc)
Comment: “It is ridiculous what parents are expected to do without resources or help.” While a licensed home for the developmentally disabled would be obliged to have strict fire safety protocols in place, none of that is true for community-based settings.
Getting outside help
Can insurance companies help in some way to provide tailored advice? Can there be a mandate for insurers to provide extra precautionary measures to insureds when a severely autistic person resides in the home?
Can the state, insurance companies, local governments, regional centers for the disabled or nonprofits provide subsidies for safety technology to families that have financial need? Also technical support for those who need help with installation of safety equipment?
Training for the person with autism
Regional Center (developmental services) resources — Can fire and emergency safety be part of the IPP (individualized plan) process? Can the Department of Developmental Services have procedures to ensure emergency preparedness?
Education and training. Create lesson plans and use ABA resources toward safety training. Virtual reality programs may be useful for a subset of people with autism.
Kelly Bermingham offered an Emergency and Disaster Assessment Tool for families. Please click here for the document.
Some autism families live in veritable fire traps because of the need to prevent wandering and elopement. How do we balance elopement prevention versus fire safety in the home? One should not have to be compromised for the other.
Next steps
Navah and Matt Asner said the Ed Asner Family Center in LA is forming partnerships with local Fire, Caregivers and Sponsored Partners to help create safety packets and cutting edge training technology including VR and first person video toolkits to all Special Needs families. "We have a committee that is really motivated to make this happen as soon as possible so this horrific tragedy never happens to another special needs family."
Amanda Kelly said a Fire Safety and Autism webinar being offered for free on October 23 in Mu and Feda’s honor: https://www.pbscooperative.org.uk/courses?fbclid=IwAR02IBxd0L6EgOoz6Ylukvn-FPlZmBJLSdFJ7laI1o1FUMgNrPjbRjozNNI
A Feda and Mu Almighty Task Force should be created to create and disseminate fire and emergency planning information.
Karen Fessel said some autism advocates in California are discussing what might be done at the state level to prevent similar tragedies. She will report back on that.
Bill Cannata was mentioned as a severe autism dad and a firefighter who gives presentations on first responders and autism. https://www.arcsouthnorfolk.org/alec/
Also see a video on Recognizing and Responding to Autism in Disaster Settings, by the KIDs in Disasters Working Group of Orange County, California here
Alycia Halladay asked people to sign up at www.ncsautism.org for the NCSA newsletter, which would contain updates on efforts that follow in the aftermath of this tragedy.
Many thanks to all the speakers and participants for such a wide-ranging, informative, and heartfelt discussion.