Editor’s note: This story includes the mention of suicide and its impact on a community. If you or someone you know is having suicidal thoughts, you can reach the national crisis hotline at 800-273-8255 or by dialing 988.
Erin Brooker Lozott has worked in the field of autism and mental health for 29 years. She answers calls from people in crisis every day. But she never expected the call to come from someone in her own family.
“When that happens to somebody that you care about, it doesn’t matter how well trained you are,” she said.
Before last year, Lozott said it would have been harder for her to help that family member. But with the new 988 number for the National Suicide and Crisis Hotline, she has options.
“Once you call 911, if a police officer comes to your house, whether it’s a non-emergency line or the emergency line, your ability as a parent to make a decision, if you want to change your mind, it stops,” she said.
Lozott currently works as a program director for the Els for Autism Foundation, a global nonprofit dedicated to providing services to people with autism, including speech language therapy, occupational therapy and mental health counseling. Her voicemail, as well as the voicemails of all mental health employees at Els, includes the 988 number.
“Knowing that something that’s constant like a 988 for anybody, no matter where you are in the country, is available when that cycle comes to a head and you just need that space and that person to have no judgment and to be able to call and feel that you can have a place to get help, is significant,” she said.
988 went live in July 2022. Since then, the national hotline has received almost 5 million contacts, up 33% from the previous year.
Director of the Alachua County Crisis Center Alexandra Martinez said in the months leading up to the number change, the county was preparing for an influx of calls. But along with the new number, the national hotline also implemented location-based routing changes that actually decreased the number of calls the county got from 988 in the first year, from 11,563 to 9,850 total calls.
But, she said, the center did receive a larger number of calls more recently, jumping from an average of 748 calls per month to 1,001 calls in June.
“So, we think now that the routing changes have kind of settled out, we will start seeing what will end up being true to our area and our crisis center,” Martinez said.
Martinez emphasized the hotline isn’t just for those experiencing suicidal thoughts. Even those just having a really stressful time can call and talk.
“Oftentimes, the misconception is that people are calling looking for an exact answer, when for the most part people are just needing somebody to listen and really give them their full attention and give them validation about what they’re going through and give them a sense of connection,” she said.
Mellonese Mayfield, director of the SMA Healthcare crisis response team, said her center also didn’t see a huge uptick in calls after the number changed.
“We’ve worked on other initiatives within our community where everyone says, ‘Oh, you’re going to receive a lot of calls’ and we do not. So it doesn’t always necessarily mean because something has changed that it’s going to actually impact us in such a dramatic way,” she said.
SMA has a mobile response unit that responds to mental health emergencies in Marion, Volusia, Flagler, Putnam, St. John’s and Citrus counties. The national hotline will sometimes patch local callers through to them if they need more specific help, but Mayfield said there’s a catch.
“With 988, the callers are anonymous,” she said. “They can choose if they want to divulge their name and information and location and all of that.”
If the caller doesn’t disclose that information, Mayfield said it creates a barrier to care.
“It makes it a challenge when you’re wanting to assist someone in the community and you do not have all the information that you need in order to reach them,” she said.
And it’s not just the anonymity that mental health experts take issue with. Lozott said there’s still more work to be done to train 988 hotline workers on how to help people with autism.
According to a press release from the Autism Society of America in 2022 regarding the 988 hotline, “30% – 40% of people with (intellectual and developmental disabilities) are likely to have co-occurring mental health disabilities.” For people with autism, that number increases to 70%.
The Centers for Disease Control also reports that adults with disabilities are over three times more likely to report suicidal ideation compared to those without disabilities.
“I still feel that more autism specific training to the hotline, the people working at the hotline taking the calls must occur because autism is so complex and unique to each individual person,” Lozott said.
In her ideal world, Lozott said 988 would have a video call option for people with autism to be able to pick up on more nonverbal cues.
“You already have a hard time processing language, and now you have a hard time with social communication, and you’re on the phone, and you can’t even have the opportunity to pick up on someone’s nonverbal cues, their social language, their gestures, and you’re trying to explain to somebody on the phone that you don’t know that you need help from a suicide standpoint,” she said.
But until then, Lozott is happy she has the option to call if she needs it.
“Moments of suicidal ideation are going to kind of pop up, they’re going to kind of show their face and emerge from this world. Everybody could, the person could feel perfectly fine and happy. And all of a sudden a wave of depression kicks in that is just too much to not fall off the cliff,” she said.
“No one ever forgets 911. No one ever forgets 411. And now, no one will ever forget 988.”