Suicide prevention in autism group

Can you find anyone to investigate my methylone/mephedrone "cure"? 

It really did "snap me out of it" with a single dose, and I've never been as badly affected since...

Well we're moving in the group and hope to get a major grant to fund the study/ app development

Please don't make it a "smartphone only" app!

For some of us (admittedly not many, these days.) a phone is just a phone, a watch is just a watch, and you access the internet using a device with a big screen and fast & reliable data rates called a computer, otherwise it isn't worth doing.

I thought that a person's problem could be sent to all on "the panel" and then answers given from each of the types of responses. Responders could vote for which ever response they feel is best

Our project has yet to be published, but has been running for 6 months

I used the Stay Alive app last year. I put pictures of my parents on it, but the sad thing is they won't be around forever and one day I won't have much of a reason to keep on going.

I found Samaritans gave me very cookie cutter copy and paste advice which made me feel worse because of how impersonal it was, I really felt that nobody cared after contacting them. I probably need some real 1on1 therapy from an actual person who gets to know me and my issues. I am not sure an AI could suffice in that regard, because it is the idea that somebody cares that you really need.

Having tried to use chat bots on websites for various services, they are hopeless at finding what you need and only able to regurgitate stock responses based on keywords.

cant find you named in any of the projects there ---- what project are you involved in ?

www.autismresearchcentre.com/.../

Great. I hope we get somewhere eventually 

Well the idea is that it would continue advising, so doctors medicines and psychological management first, then the other options…….

Actually, I looked these guys up and signed up to their volunteers for research bit.

Simon Baron Cohen and Jon Cheyette Carrie Allison 

Wonderful. Well said.

I think we’re on the same page and I have now got a small group of world experts to listen to what people with lived experience have to say! So I’m in a good position to try and move this forwards with PWLE

who are you working with in ARC in Cambridge ? 

Thanks Dawn. If this ever gets fully functioning, there will be a data input section, which will have to have a "genuineness" score, so it is not filled with scammers

Typical medical profession response. "Your input is irrelevant because you don't have a medical degree".

MY suicidal ideation was way more flipping dangerous than the drugs I took to help ameliorate it!

And you are right, I didn't; get much help off any other drug or combo I may have tried, a little relief for a few hours maybe, but THIS WAS DIFFERENT. I experienced a true one shot cure. I've felt miserable and had bad thoughts since then, but not that strong long lasting ideation that was driving me to act on it.

In short, it appears to somehow left my serotonin levels PERMANENTLY a smidge higher, than when I started. 

But my little discovery came from outside of the medical profession & I don't have a big drug company behind me to PAY people like you to take it seriously, so yeah, it stays with me.

Because you are right, Drugs ARE dangerous (especially prozac, I did try the professional medical route first, and for me, (like many others report) it was disastrous. My G.P. clearly had no clue what the stuff actually did to you, or how fast it kicks in!) So whilst I was willing to risk my own health, seeking a solution that "worked" outside of the captured and tight box of "official" medicine, I can't recommend it for others.

Who knows, what the side effects of mephedrone/methylone combo could be? (At least spell it right, if you are going to poke vague aspersions at the chemical, and that's all you have, vague aspersions) because YOU don't know what the stuff does either. There's no money available to look into it (even if there was the interest) and evidence collected by illegal users is automatically disallowed, because, well, it's illegal! 

But for the record, here's what I worked for me:  

150Mg methylone orally, then 1 hour later 150Mg methylone orally again, then 1.5 hours later approximately 200Mg of mephedrone in 100ml water. (I split the "recommended" dose of methylone in half on safety grounds because I'd never tried it before, and took the mephedrone, because the methylone did not seem to be delivering any real effect, and I did at that point have a working knowledge of what to expect from mephedrone.

The whole point about novel drug use whilst feeling suicidal, is that your life has become an unbearable burden, and you are seeking a temporary lifting of that burden. The illegality and danger is really not so important at that point...     

And no-one with any critical reasoning ability who has been alive for a few decades believes the medical profession any longer when it comes to drug safety. They told so many easily disprovable lies about cannabis and MDMA for so long, that my generation takes your advice as "just a guide" (which admittedly works really badly, when it comes to antibiotics.)

I'm scathing about the medical profession with good reason. Despite having benefitted from its prowess  on several occasions, too! You all seem to think you are our masters, and not our highly paid servants.

However, things are changing fast now... Despite all the dire warnings & propaganda on the TV real people more often than ever, are finding real solutions to problems their doctor deemed intractable, by doing it themselves.

No-one NEEDS 6 years of study to understand just ONE medical problem, so people are becoming their own "specialists" now via the internet. MY GP's lack of knowledge about how my Autism works is SO obvious, because out of the two of us I am the specialist!! 

Expertise, they say, is gained after 5000 hours of work, I've currrently been working on MY problems for 438,00- hours!!

I go to the GP hoping that in his mere 21,900 hours of general medical training, and (maybe) reading the periodicals and updates he MIGHT have an aswer, for my specific problem, and I don't mind if he doesn't, but I do mind when he pretends to have knowedge, (such as you just did with regards to the hazards of methylone) because I simply do not trust easily disproven "liars".

Don't get me wrong, there are the occasional doctors I meet who are really in it for the chance to actually heal someone, and not ot have prestige and money and look down their noses at everyone else. I've had doctors who will work with you to diagnose and treat a particularly sticky ailment, but they don't seem to be the majority and in fact appear to be declining in numbers, and if you get one under the NHS, they are soon replaced with a rubbish & patronising one.

Oh, and I've worked "back office" in the NHS. I've had an opportunity to study many hundreds of NHS facilities & absorb the "culture" as a fly on the wall.. I.T. people are just like flies, actually everyone tries really hard to ignore them... Oddly enough though, outside of their area of "expertise" GP's are as unable to stand up for themselves as any patient. The I.T. department I was gracing with my prescence wat F*&king uselss. It took a doctor TWENTY MINUTES to get a log on, before even attempting to use his machine. Their I.T. was venial (that's exactly wthe right word) but so was the leadership. 

It's easy to criticise and much harder to deliver good service, but we aren't getting anything LIKE value for money out of the medical profession as delivered by the NHS. And it's becoming obvious to the man on the street now. Once there is a universal medical encyclopedia, with a decent AI front end, and a suite of you tube videos showing the public exactly where to poke and what to feel for, DIY medicine will really start to "fill its boots".

A small fraction of the public now knows that Cannabis Oil (a Class A category drug) is both benign (compared to the alternatives) and efficacious against certain cancerous growths. Cannabis sellers are now selling a lot of oil based product, not only for recreational use, but for DIY oncology! And some of us end users are managing to sneak our results into the proper medical literature... (well I did anyway, when it worked on my cat!) Cannabis definitely treats aspects of my Auism ADD related problems, (it's why I still use the stuff) yet my Doctor and Psychiatrist both tell me that there is "no treatment for Autism".

Who's the effing expert in what works for my problems here? Yet there are actual laws that say I CANNOT CLAIM the things I know work are efficacious without being a Doctor. (Of course, making such claims as a practicing Doctor which go against big pharmas interests, will destroy you credibilty (and if you keep it up, your career,) real fast...

Doctors. They're good, (sometimes) but they aren't as great as they are on the T.V. set. Caveat emptor!

If you ever need research subjects, I'm up for it. Thank you. I'm googling.

We’re closely involved with Autism Research Centre in Cambridge and the input of PWLE people with lived experience is vital…….I feel

Oh wow! Yes, yes, yes.

I have been so badly let down by MH services that they've been actively damaging. I now almost feel I need protecting FROM them and I'm terrified my medical phobias will smash me into another crisis which will put me in their hands.

I was just thinking this morning that what is needed is a whole other service of mental health, especially a crisis service, for NDs. Your group sounds fascinating and I'm delighted you exist.

Going to take some time out now to read this growing thread properly.

It sounds great, but I can imagine that anything giving advice would be a legal and liability nightmare.  When people are on the brink of suicide their critical abilities are reduced or impaired and they are (as you know) extremely vulnerable.  Difficult to see how an app could account for any specific set of circumstances.  Giving the wrong 'advice' may tip someone in the wrong direction with fatal results. If you can solve those problems it could poentially be a fantastic life-saving tool.  

Are they happy? How could we possibly know, really? And there's so few of them they hardly really count in the big scheme. People think they do becuse they are on T.V. but their day is always short.

I can be happy with quite a bit less than they (or many people I meet) seem to need. So they don't really affect me. I'm too focussed on sorting out my own kind of "happy" to worry about what other people might have.

I get WAY more pleasure out of my £70 rescue cat, that I ever did when owning/operating my own light aircraft! (I've still got one somewhere, but it's a waste of time and money so I ignore it). Even doing narrow boats was way better than aeroplanes, but I'd always wanted to do aeroplanes since I was six.

Sometimes what you think you want, is definitely NOT what you need.

The pornstar lifestyle for example: I knew a guy who had everything right for him to naturally be an utter "lothario". Did it make him happy? Feck no!! I watched in disbelief for many years as he tried to make it work for him.

The screen often lies. Because it mostly tells the truth, the lies can slip by you, very easily.