Please help share experiences with crisis hotlines

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I am working on a project with my local and state government to try to revamp the training given to crisis hotlines and police and hospitals about how to help people on the Spectrum. I have shared my personal disastrous experiences with my government officials but I want them to know that this problem is not just with me. I want them to understand that the lack of training and understanding on how to deal with Autistic people in crisis is a national and even a global issue. I would like to see Autistic people specifically employed in every part of creating the training protocols on how to work with Autistic people and how to help meet our crisis needs and in carrying out the trainings of these protocols.

It is so important that Autistics are completely involved in every step of this process. Please share any experiences you have had with the 911 system in the US and whatever the crisis hotline is in your country as well as experiences you have had with police or with hospitals where you felt that the way they treated you showed that they were not trained in Autism or that they did not understand it. You can also share examples where you think you were treated really well and where they understood Autism well. We would like examples of how people are doing it well to give us ideas of how we can make changes as well as the disasters.

Thank you.

Thanks Skibum.

I hope people do record their experiences so that a change process can begin. It's time.

Yesterday I wrote to a group of autism "specialists" here - who post about higher suicide risk but don't look beyond the status quo system designed for NTs.

This was my message to them:

Suicide phone services - like Lifeline here and Samaritans here and elsewhere seem to be designed by NTs for NTs. I used to refer suicidal AS adults to these services but they were often unhelpful and in some cases damaging. For one thing, many AS adults dislike making phone calls and talking on the phone. Some have reported being met with hostile attitudes, which blame them for being socially marginalised, as if the marginalisation process by NTs in social situations was the victim's fault. I have nowhere to refer people now, and am tired of reading articles (by NTs) stating how terrible it is that the AS suicide rate is so high, when the inaction of charities and support services ignore such a fundamental issue and are not targeting service delivery in a way consistent with AS needs. It's hypocritical.

I will post their response if/when it comes. People who want to are very welcome to copy my message if they want to, and forward it to the directors and funders of suicide services, or anyone involved in that field.

I used a suicide prevention online chat once (this one), and pretty much all they did was restate what I'd just said and offer me a few obviously false platitudes. It just got me frustrated, and I lied and said it helped just so I could end the conversation. Although honestly, I'm not sure what they could have done differently to be more helpful to me

As for hospitals... oh, boy. I was hospitalized for severe depression, self-harm, and suicidal thoughts at the beginning of February (here). I agreed to be admitted, but only if I didn't have to have a roommate, because I had a roommate my first year of college and it was extremely detrimental to my mental health, not because of my roommate personally but because I'm not suited to living with other people - I can't fully relax if other people are in the room at all, even if they're sleeping or ignoring me, and I feel responsible for my roommate and yet my social anxiety and selective mutism keep me from actually being able to be any help or comfort. So the first night, I didn't have a roommate, but the very next day, they moved someone in with me. A few days later, the other person moved out, and the next day, I was suddenly told to get whatever I wanted from my room for the day, I was going to be locked out. I asked why, and was told it was because I'd self-harmed (I picked at a small scab I had from self-harming previously so it bled again). I thought that was a bit excessive but went along with it. The following day, the psychiatrist that was treating me there met with me and asked if I knew why I'd been locked out of my room. I told her I'd been told it was because of picking at the scab. She then asked me what I'd been doing all day during my time there. I told her that I'd been doing puzzles in the booklets I'd brought and going to groups (I made sure I went to at least one or two a day), and she said "No, you've been lying around in bed all day." Eventually during that conversation, she told me that I was going to be let back into my room, but that I had to go to group that evening or I'd be locked back out the next day. Then she asked me "So what are you going to do if you feel like self-harming again?" and I said "Go to the front desk and hope they're not too busy to talk to me." (that was a regular problem during my visit there - I'd go up to the front desk, and either there would be no one there, or everyone there would be busy with paperwork or something, and they'd glance up, look me in the eyes, and go right back to their work, and my selective mutism often makes it impossible for me to initiate a conversation myself, so I couldn't really do anything besides just leave). To that, she said, "You're really gamey, you know that?" That's not a term I'd ever heard before, so I asked what it meant. She said, "You're being manipulative." I was completely stunned - no one had ever given the slightest sign of even implying that I was manipulative ever before in my life, and I thought it was about the last thing I am. So I asked how I was being manipulative, and she said something along the lines of "You know, 'I'll do what you want if you do what I want.'" I'd said absolutely nothing about "if such-and-such" at any point in the conversation - in fact, that seemed like what she was doing to me, saying I'd be let back into my room if I went to groups (I realized that it was just the morning and evening check-in groups they wanted me to go to, which I hadn't been going to because I'd had a bad experience during such a group during a previous hospital stay, involving someone walking out during the group screaming and swearing, and I didn't want to have that happen again - and I told the staff so when they asked if I was going to those groups. Yet no one had said a word to me until that moment that there was any problem with me not going to those groups at all - I still filled out the sheets and handed them to the staff, the only thing I didn't do was go listen to everyone else read theirs aloud and also read mine aloud). And the real kicker was, if someone had just told me that they really wanted me to be going to these groups, I would have gone - there was no need for all this fuss and bother. But then when I told other staff members that I'd been locked out of my room for not going to groups without anyone saying a word to me beforehand and that now I was afraid they'd just lock me out for anything at all that they didn't like without telling me why, they didn't believe me and insisted that I'd been locked out for my own safety due to the self-harm. And then the following day, the psychiatrist came into my room and said, "So, you've been here for what, a week now? What do you think about discharge?" and I said "Um... okay," thinking "Wow, what a complete 180 from yesterday" - it was as if that conversation had never happened. I strongly suspect she was just looking at how long I'd been there and not taking anything else into consideration. But I sure wasn't going to complain about getting out of there, so I was discharged two days later. The psychiatrist also had apparently never heard of selective mutism, because when I tried to explain that I couldn't say anything when I went up to the front desk and everyone seemed busy, and I told her it was because of selective mutism, she seemed perplexed, and kept asking me why I called it that if I wasn't just choosing not to speak. Um, because that's the official term for it, that's why - and yes, I know the name implies that it's a choice, and that's why I loathe it.

Wow, sorry for the super long post

I phoned Childline about 4 times when I was 14 - 16 years old and they helped me because they gave actual advice as opposed to just listening. Then I turned 18 and couldn't bring myself to phone Childline so I turned to the Samaritans instead and found them to be rubbish. All they do is listen and give meaningless platitudes without providing any useful advice.

A helpline that provided *advice* on specific situations would be the best thing.

Thank you so much for these posts. They are so helpful. I will post my own stories as well. I only have a minute right now but as soon as I have some time I will share my stories. Thank you again, those who have posted. As many people as can share, please do. I really want the people whom I will be working on this with to understand how severe these issues are. It would be great if we could start to see some changes and also create jobs for Autistic people and other disabled people in this type of field.