*trainig for first responders & ER staffs - please help*

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Thank you so much. I hope so too. One of the big issues that I am facing is a real struggle. I reached out to the police sergeant who mistakenly 302'd me a couple of weeks ago and offered to do a class on Autism for his police department. He and the fellow officer who was with him when they took me in thought that would be a wonderful idea and they really want me to do it. The problem is that they have a policy that they are very strict about that anytime someone comes to teach anything about a mental illness or a disability of any kind, they have to prove that what they are going to teach is relevant to enough people in the affected community in order for them to hear the material. So I have to prove to them that the topics that I want to share with them or the topics that we all want them to know in order for us to not be hurt and abused and bullied and killed from being misunderstood, are going to be important to enough people in the Autistic community to make it worth their time to sit and listen to a class. So I was hoping by getting support here, we would be able to prove that these issues are actually of value to us. But unless people post, I can't prove that any of these issues are actually important to the Autistic community so I will not be allowed to do a class for these officers.

But I am hoping that Autism Society where I live will find some value in what I want to share and that they will allow me to teach officers and first responders and hospital staff through them. But I can't guarantee it because they might have the same policy. So I can work my butt off trying to change things in this society to help us but without the support of the Autistic community, I will not be able to accomplish anything.

One thing I have noticed (though I am not sure if this is an autistic thing), is that it's really hard for me to communicate my pain level to doctors. I don't know if medical professionals are looking for non-verbal signals to go along with my 1 to 10 description. I don't know if I just feel pain differently than other people. -but it has happened twice now that doctors have missed bone fractures, since my pain didn't appear "severe" enough to warrant an x-ray. Once was only a toe fracture (later found on x-ray after it started taking on a concerning shape) and the other was actually a cracked vertebra that took a really long time to heal.* If I could fix just one thing it would be this.

*Before anyone worries, I am just very active and clumsy.

I've had experiences in a psychiatric hospital (where it's their literal job to know about mental illness and neurological conditions!) in which I was treated terribly. To be fair, it was a really crappy facility that's now under investigation for malpractice, but I thought I'd add my story as an example of the kinds of things we experience.

When under stress or anxiety, I go nonverbal and can't speak, or I use a lot of single words, fragmented sentences and echolalia. I have a boogie board that I write on now, but at the time of my hospital admission, I used my iPad to communicate when I couldn't speak. I tried to explain this to the staff who admitted me, but they said they had to take it until they could get a doctor's approval for me to have it on the ward.

It took two days of me harassing them, even showing them their own "patient rights" form that they had given me, on which was written "You have the right to methods and supports to help you communicate effectively" before they finally gave in. That was two days of me being unable to make my needs or wants met effectively, nor to participate in the group and therapy activities that they required as a condition of patients' release. I was absolutely livid.

Long story short, the message for first responders and hospital personnel is to never under any circumstances take away an autistic's communication device, no matter what it is: iPad/dynavox, pen and paper, Morse code, smoke signals, it doesn't matter. If they use ASL, you are required by law to get a translator if you don't understand what they're saying. Also, presume competence. I can't tell you how many times I've used my boogie board or iPad and had people talk to me in that slow, high-pitched "special needs voice" as a result. Just because we communicate differently, doesn't mean we're intellectually incompetent.

I think it's a very important topic. I just don't feel able/equipped to do the topic justice. That's because I've never been in the kind of situations described in this thread.

The best I can say is when feeling overly stressed I become irrational, verbally heated , and you could knock over 25 points off my IQ . I'm very different in such a situation than I am normally .

ER staff simply have no idea and no training. They probably judge you based on comparisons to neurotypicals, and where there are differences they get annoyed instead of inquisitive.

You have to wear scratchy hospital gowns and the lights are bright and the machines constantly beep and there's a million people in the room touching you and not explaining why and everyone is in a hurry so they don't take the time to listen if you're stumbling with your words. They're asking rapid-fire questions and you're in pain and no one can tell you a timeline or what to expect and they only do things their way. You have no control and the ER sucks.

The ER is hard because it's so busy and they provide care based on triage, so unless you're actively dying they're not going to pay attention to you. Even broken bones and deep cuts don't mean much unless you need surgery since you won't die from them within the day. The system is designed for physical ailments only, there's not much they can do for mental health with the way things are.

I think the important part is to disclose your autism to all the staff, they won't take your physical ailment any less seriously because if it. It's hard though because staff might reduce sensory stress more if you're rocking with your hands over your ears, but then they might question your ability to make your own medical decisions. If you can, try to anticipate your triggers and explain why you need the accommodations before you need them. ER staff know to be quiet and slow and keep the lights down for patients for migranes or if a sick baby comes in, so it's not too crazy to ask them to do the same for you. Hopefully it takes away a few of the many stressors.

You're going to have to compromise too though, bring your headphones, bring calming objects, bring your own blanket and pillow. If there was a way you could show up prepared to the ER, with a sheet or two of that spelled out your needs and why, then maybe it would be better. "Autistic patient: Lights off, door closed, quiet please". Or you could go more in depth if you want.

If you're motivated to create change, do so. Email the hospital and your local autism groups to create programs to raise awareness: you could make little handbooks for each hospital department, you or someone else could give a lunch talk or a seminar to employees, you could write articles online, you could help the hospital staff draft an employee-wide email.

It's harder if you're brought in unexpectedly, like with the cops. That sucks. But the EMTs are usually pretty nice and can grab helpful possessions for you before you head out in the ambulance.

I just saw your post today, skibum. I applaud your efforts. I gave a training to first responders about what they may encounter and how to also consider a disability before deciding someone was incompetent. It was a small training in a rural area. I think it was appreciated. I will write more when I have access to a real keyboard.

skibum, I applaud your efforts because first responders CAN NOT have too much training or information on this subject.

I encountered a book on this very subject entitled Dangerous Encounters - Avoiding Perilous Situations with Autism : A Streetwise Guide for All Emergency Responders, Retailers and Parents. Its from Jessica Kingsley Publishers. I read it several years ago and am still motivated to contact the police, fire and rescue departments in my area to talk with them on the importance of this training and to donate a copy of the book. But with my AS, I am not up to tackling such visits on my own, nor have I found anyone who is willing to assist me. Perhaps you can incorporate this book into your program.

Here's something ER staffers should know in general, not just for autistic people. When someone comes in with a migraine and asks that the f*****g rock music be turned down....f*****g turn it down. This is just one reason I refuse to go to an ER even if I am dying.