Break the Cycle Campaign - more than 6 in 10 people detained in mental health units are autistic

I feel this.  

I really want to see change as well. 

I think the problem is that the majority of people most affected are in too vulnerable a position to do much or get engaged. They have too much on their hands just trying to survive the day.  That's how government get away with it.  The vulnerable all too often cannot speak up for themselves.

Keep us posted, Peter.  I'm not in London or Leeds, but I'd travel to London to protest.

I'm so sorry for what you have been through.  Might it help to get some proper autism informed bereavement support now.  It might better equip you come the inevitable.  I get that one, my parents are pretty frail now too.

Indeed, I saw this earlier this week.  It's so upsetting to read these stories.  

The trigger for me was when they took my teeth and the permanent sensory trauma that left me with.  I KNOW I escaped Jackie's fate by a mere hair's breath.  Literally escaped.  I feld the hospital and had to "go missing" for a while so that they couldn't do an MH assessment and the police could be talked down from the position of having to take me back there before I dared go home.

I had no idea I am autistic at that point but as a medical phobe I knew that no matter how bad things were they would get a whole lot worse locked inside a hospital. God! That would have been like trying to cure an arachnophobe by locking them in a box full of tarantulas and black widows.

Given that mental health services completely missed the fact that I could be an autistic person experiencing sever sensory distress and instead misdiagnosed a PD without even telling me, you betcha I am one of those who is now too afraid to seek support for anything emotional for fear of that being misunderstood and mishandled by services such that my problems will only get worse.  I try to keep my doctor's mind focused on the sensory processing differences in trying to survive physical medical treatment now and tell them nothing about any other kind of anxiety.

About 60% of that 700000 will be people with some level of suport needs, for them it's more did their carers care enough to sign. For the rest there is a real 'nail that sticks out gets hammered down' syndrome. I wrote a letter to the police complaining about the way that 16 year old girl was treated when she was arrested. I couldn't get any of the autistic people i know IRL to sign it. They all said it was pointless or they didn't want to be on a police list of trouble makers.

This mentality amoung autistic people of going through their lives hideing ... I'm sick of it.

I agree that we need to do more. Currently there is no evidence that the majority of autistic community are actually supporting these kind of campaigns.

Take the recent NAS petition that achieved around 18,000 signatures. That's quite pathetic really when you consider than there are 700,000 autistic people in the UK according to the NAS website (in reality probably far higher). Autistic people aren't particularly social but most would probably have at least one other family member who could also sign. It should have been relatively easy to achieve the 100,000 signatures needed for a parliamentary debate.

I'm not convinced that a traditional march or demonstration is the answer for the autistic community. There would be just too many differences to overcome to be able to get everyone in the right place at the right time. It would probably have to be a silent protest, personally I have to hit the mute button as soon as any news coverage of such a protest appears on the TV!

The autistic community includes a lot of IT experts. Maybe some kind of noticeable protest/disruption could be done that way, without doing anything illegal of course 

And I’m going to point out that the Department of health which is responsible for this is based mostly in London and Leeds. London is a little far for me but I’m more than happy to organise any protests in Leeds if people actually want to come and attend them.

I'm hoping things will improve with this given some more time. It's helpful that organizations are campaigning, that's brilliant and hopefully it will result in less sections and more autistics returning home, where they should be, and not locked up for being different.

I will keep you all posted. And thanks, I think I will look at sharing my story. Hopefully it will help somebody and in itself help to stop these terrible things from happening.

Oh and please look after yourself as well.

Realisticly people have been writing letters for a long time. The goverment needs to feel more presure to be pushed to act. I think people need to start talking about orgonised acts of protest. Because we can't expect the goverment to take us seriously if we don't care about this enough to shove a cardboard sign on a stick and march outside their offices on the odd weekend.

I mean if we aren't at least that comitted why should they take us seriously?

Autonomistic said:

and put you off seeking 'support' in the future.

This is definetly true. Whenever I start feeling the slightest bit of a negitive feeling then I get scared that someone will send me there again so I dont tell anyone (online im a bit better since you all wouldnt be able to do anything) and I even am terrified going to the doctor because I feel it will be in my medical records and I feel like everybody I meet knows Ive been there, even though thats irrational 

Thankfully you escaped fairly quickly but sorry you had to go through that at all. Even a short stay can be very traumatic and put you off seeking 'support' in the future.

Joking about it to you is cruel, it's no joking matter when autistic people are genuinely living in fear of being locked up. So many people wrongly believe that autistic meltdowns are wilful bad behaviour and something we are able to control. 

Thank you. I'm sorry to hear of the loss of your sister. Being pulled out of your familiar home environment into the totally unsuitable mental health ward was the last thing you needed when trying to deal with such a devastating loss. I agree with you about why can't the so called professionals in mental health services see that , it's not rocket science.

If you are willing to go public about your experiences then one of the autistic charities may want to feature your story as a case study.

NAS also have an ongoing campaign to change the mental health laws, to prevent people from being detained just for being autistic. Also crucially to force councils to provide enough community services to prevent autistic people from reaching crisis point.

https://www.autism.org.uk/what-we-do/campaign/mental-health/time-to-act

Please do keep us posted about any response you get from your MP.

I was detained once, it only lasted a day because they said they could tell I was having an extremely hard time and they were afraid I was getting worse. Even though I was there for only a day, I start to panic and almost have a meltdown when someone mentions mental health units (or worse if they joke around about putting me in one). Of course my experiance is nothing compared to people who were in for years

I'm sorry you find yourself worrying if you will end up such a situation. I truly hope you don't. It really is truly shocking. I've been in that position, after losing my sister and was detained.

I'm home again now but being in hospital for so long had a huge negative effect on me on so many levels - a noisy, bright unpredictable mental health ward is NO place for someone with autism in my opinion. I was detained in 2021 and I still have nightmares about it now! My parents are both in ill health and I know before long I will be back there and that frightens me, proper terrifies me just thinking about it. That's why I joined this community, so far it's been invaluable to me so thank you guys you're awesome.

I hope something can be done about detaining autistic people. We don't need shutting away in a hospital. That is the last thing we need... I don't know why the professionals can't see this. We NEED more access to good support with people who understand and want to help us.

Autonomistic said:

We need to unite to stop this appalling mistreatment of our fellow autists.

Amen to that. I have contacted my local MP regarding autism and being detained, am still waiting for a response but will keep everyone here posted if anyone is interested.