There’s no place like home… unless you are autistic, part 1

DSCF0856What do you want?

This is a question that I get asked a lot when it comes to where I want to live. I was put into care when I was 21 years old after our local authority refused to offer any help, support or respite care for my Mum who was dealing with my severe challenging behaviour every single day without any rest. All she wanted was a few hours of respite, but they refused even that. After I attempted to swallow all of my pills in a stupid attempt to end it all, I was put in hospital and left there. It was the only way to get me care, to make me homeless…

A residential home out of county was found. I liked the residential care home. The only problem was it’s location; the middle of nowhere. Without a car, you were pretty much trapped in the village which consisted of two long roads and no shops. Our residential home had 6 residents and 3 cars. One day the little red car broke down and we were down to two cars. Arguments would regularly break out over who got the cars that day and for how long. The ones who lost the argument had to stay in the village for the day staring out of the window at the brownfields surrounding our house.

Even at the first meeting with my new social worker, the emphasis was on getting me as independent as possible as quickly as possible. A time frame was set by the funding authority. The time frame was four years, at which point I was told by my social worker that I was ready for something called “supported living” and that it was better (translation: cheaper) than residential. I told the social worker to f**k off. I think I made my feelings pretty clear that day.

After that meeting I was told that the council were no longer going to pay for the on site psychiatrist and psychologists who had just barely been keeping me alive over the past four years and were still working me through my problems. As a result my mental health deteriorated and my behaviour got more “challenging” as I struggled to express the feelings inside of me. We were being encouraged to be more independent by the new manager of the home. That meant a 15-20+ minute walk down the long lane then potentially 30 or more minutes waiting for a very unreliable bus on a busy main road.

Being in residential was not the problem, it was the location. As soon as my social worker heard I was having doubts about where I was staying she charged in and used my confused and vulnerable emotional state to convince me that I would be happier in supported living. I was bored and suffering from severe mental illness, I was like putty in their hands.

SW: “What do you want?”

I want to be in a home just like this but somewhere less isolated…

SW: “That’s not possible, you will go to supported living”

No that’s not what I ….

With that, the meeting was over and my fate decided. My words had been twisted to suit the funding rather than my own personal needs. Mum warned them I wasn’t ready but no one would listen to us.

The house we were forced to choose due to an impossibly short period of time was in a town. I would not have the same level of support, instead I would get 5 hours 1:1 and there would be someone “on house” at all times. Me and my Mum were assured that the home was for people like me “high functioning” were the words they used. That was the first lie I was told there and although I later came to care deeply about the other residents, some of whom were profoundly learning disabled, at the time it was a huge shock. I decided I had changed my mind about moving so the Social Worker called another meeting.

SW: What do you want?

I want to stay here. I don’t want to move. The others are nothing like me and I am not ready to live in the community

SW: The process has already started. It is too late to change your mind.

Meeting over.

I cried for three days when I moved into the new house. On the fourth day my Social worker and the new company’s manager held a meeting with me to see how I was settling in. I really wasn’t and I told them this.

SW and manager: What do you want?

I want to go back to the residential!

SW: You are here now, you can’t go back

But I hate it here!

Manager: It doesn’t matter, you are staying here…

But I don’t want to stay here

Manager: Tough

I WANT TO GO HOME!!!

Manager: That is NOT AN OPTION

F**K OFF YOU F*****G D******D!!!

I ran up to my room, grabbed a chord from my nightgown and tried to hang myself from the shower. I decided if I couldn’t go back to where I felt safe, I didn’t want to be alive. A staff member caught me and pulled me down. I was sent to the local psychiatric ward for a week.

Psychiatrist: What do you want?

I want to go back to my old house

Psychiatrist: You can’t so how can we make it better?

I… I don’t know… (LET ME GO HOME!!!)

I was sent back to the supported living house. I was abused there for over a year and so were most of the other residents. Before I moved in, they promised my Mum that they could handle challenging behaviour. By handle I think they meant ‘manhandle’ as I often ended up face down on the floor or in a four point restraint. Some of the staff would knock me to the floor if I so much as raised my voice or showed signs of anxiety. Eventually I would put myself on the floor as it was easier to accept my fate than struggle. The CQC were contacted and the company was given six months to sort it out or be shut down.

Foolishly I decided to move again. This time was my own mistake. I still disliked the house as it was loud, the other residents were hard to live with and I wanted a fresh start somewhere where nobody knew me. I was shown a room in a 4 bedroom shared house in the south of the county. It seemed so nice and perfect, I was naive. The two people who ran the service in the south refused to follow the carefully written behavioural guidelines supplied by my previous team leader and all hell broke loose as a result. To cut a long story short, I punched someone in anger, got a caution, tried to hang myself again and ended up back in hospital. I was there for three weeks while they decided what to do with me.

Psychiatrist: What do you want?

I want to go back to the residential!

Psychiatrist: That cannot happen. So what do you really want?

I… I don’t know…

I spent some time in a 2 bedroom bungalow in a small gated community in the middle of a nice small town. I loved it there, but because I was no longer allowed to live with other people due to my behavioural problems, it was decided I couldn’t stay there as there would be another resident coming back from their own stay at hospital fairly soon. I was kicked out on my birthday.

I wasn’t asked what I wanted.

A flat became available in the town I used to live in. Take it or get nothing was the offer. I went to have a look. It seemed okay, but Mum had concerns. I was still having major meltdowns, self injurous behaviour and had no support for my previous suicide attempt. Mum was worried about noise from the pub. When I first moved in my neighbours were lovely but she pointed out “what if they move out and a noisy neighbour moves in?” She also said she was worried in case I went into crisis out of hours and that either I would attack someone or someone would attack me.

Tick, Tick, Tick… Three years later, all of the above happened. Mum knows me so well, either that or she secretly has a crystal ball and forsaw the future. The response to Mum’s concerns was;

“Don’t be so negative!”

I am once again being asked “What do you want?”

All I can say is; I don’t know.

There is no point in arguing for what I need, my voice stopped being listened to long ago…

To be continued…

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One thought on “There’s no place like home… unless you are autistic, part 1

  1. This is a very sad, well I was going to say story but that seems belittling because it’s not a story, it’s your life, so I will say that this is a tragedy that should never have been.
    As always your blog is a great source of insight into the other side of care provision for Autistic people. I’m sorry, truely sorry because this is not how it’s supposed to be. Where were the person centred planning meetings? Where was the involvement of your link worker? Was any weight given to your wishes at all? It seems not!
    Where ever you were in all of this, you were not where you should have been, at the very centre of the planning for your future life. Your wishes were not considered, your family ignored, your presence in the minds of those making decisions appear to have been completely lacking.
    This is not how it should be done!

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