Over the years, my son Ryan has had drug-induced seizures, lost all of his teeth due to anti-psychotic medication and has had no right to leave psychiatric care, no freedom of choice, no phone or internet and meals given at strict times.
This has forced him to become a shell of the vibrant, young man he used to be and as a parent, it breaks my heart.
Now, with Ryan at 32 years old and an autism diagnosis within the last few years, I’m fighting to reintegrate him into everyday life – but it’s not been an easy road.
As a child, Ryan was mischievous but very affectionate. He loved life, yet looking back there were always issues, such as how he’d get very upset if his routine was broken.
Then at the age of 17, he attempted to take his own life after breaking up with his girlfriend and feeling like he wasn’t coping with it all.
As a parent, I felt terrible because he was in such a bad way but I wanted help for my son so I contacted psychiatric services.
I wish I could go back in time and take a different path.
The first interaction with psychiatric services was in our home. At first, Ryan was cared for in the community, which meant he could live at home but was supported by visiting carers.
In the summer of 2006, he was taken as an inpatient to an open psychiatric ward, and went voluntarily. At the time, I felt relieved as I thought he would be helped.
Compared to forensic psychiatry, open hospitals are less restrictive.
Ryan’s autism wasn’t picked up on then at all. The condition wasn’t widely talked about then, and there was no mention of this with relation to Ryan. If he had been diagnosed correctly, 15 years locked away may never have happened.
Things seemed OK for Ryan, however, he was continually moved by authorities from one place to another. This was very unsettling for Ryan and each time he moved, I could see him getting worse.
Although I was always able to visit, some of the hospitals were a couple of hours away on the train.
Ryan was not improving, and although he was coping on a particular drug, this had to be removed as he was having a reaction, which could have been fatal. This led to a downturn in Ryan’s mood and his behaviour became more challenging.
In 2012, he went into forensic care, which is when things went rapidly downhill. This type of care is aimed at ex-offenders and people who are perceived as posing a risk – even though Ryan has never been convicted of a crime.
It means he is always restricted as to what he can do, he can only go out if agreed and accompanied, and he has staff watching him 24/7.
I watched as Ryan got worse and worse, but because of his undiagnosed autism he couldn’t tell us how he felt or if he was suffering. Ryan lacks capacity, and finds it difficult to say how he is feeling. Instead, it came out in his anxiety, frustration and then challenging behaviour.
Ryan couldn’t cope with these restrictions, which led to regular physical restraint, broken bones and seclusion. The latter involves being locked in a room with no access to the outside world or contact with family.
On one occasion, his wrist was broken when he was restrained by nine members of staff in 2017 as they tried to put him in seclusion.
I initially thought psychiatry would help Ryan, but I now know that is not the case. This has crept up on me over time, but has really struck me since 2014, because I felt that they were making Ryan worse not better.
I have had a constant uphill battle to secure even simple things like visits. They had to be booked well in advance (if allowed, which they are not when he is secluded) and were often cancelled, even after turning up at the hospital.
My family and I have been called some terrible things by hospital staff and they’ve even blocked my phone to prevent me calling to see how he is. I could carry on and on.
I have maintained contact with Ryan at all times, visiting every two weeks when he was moved to another city – currently about 45 miles away – and at least weekly when in the same town as I lived.
Forensic hospitals are very cold, clinical and brutal – it feels like visiting a prison, such are the restrictions.
They’re supposed to be places where you go to get better, not to be contained and removed from society. They are secretive places too – I have never seen where my son sleeps or eats, for instance. When I visit, we meet in the social room and I am not allowed in the rest of the forensic hospital.
In 2018 and at the age of 28, Ryan was diagnosed with autism. It followed a long period of four and a half months where he was secluded and isolated from everyone and everything.
His psychiatrist thought he wasn’t responding and that he may have autism. He underwent many tests over a period of time and was then diagnosed with Autism Spectrum Disorder (ASD).
I was pleased that maybe this could be a turning point.
His diagnosis meant his care package was changed and Ryan has been much better since. He is more settled, interacts better with people and is beginning to enjoy life again.
The diagnosis meant he also came under the ‘transforming care’ initiative, which is all about getting autistic people out of hospital and back into the community to lead a normal life, instead of locking them away out of sight.
This has given us all hope that Ryan can live a happy and fulfilled life.
Now he has been on trips to the seaside, where he met up with me and my husband, went into a café and ordered his lunch, played in the amusements, and walked on the beach skimming stones. We had a wonderful time and there were no problems whatsoever.
He is still in the forensic hospital, although he is now cared for as an autistic man and his care is far better than before. He still needs his carers with him in case he gets anxious but they stay in the background and allow family time.
Personally, I have been severely affected by my son’s treatment, as until recently I was fighting all by myself – with the support of my new husband – in meetings and tribunals.
I have been depressed, and still cannot sleep well. Ryan is constantly on my mind: I’m always wondering how he is doing and how he’s being treated.
None of this is even a fraction as bad as how my son must feel though, misdiagnosed as schizophrenic and not autistic and locked up for nearly 15 years. He had no hope, and is not the young man he once was.
In June last year, I managed to get publicity for Ryan’s case to be released on national and local TV and in newspapers.
I have been campaigning since Ryan got a diagnosis that autistic people should be cared for in homes not hospitals, and finally the publicity and the spotlight of the media prompted an agreement from NHS and the hospital that Ryan is held in the wrong place and should be released.
Now there is some hope. Following the media spotlight, Ryan is to be transferred back into the community in a place of his own. He will still have carers, but he will have freedom to go out when he wants, to have visitors anytime, to pick what he wants to eat and drink – things that we all take for granted.
In hospital, he has been kept inside, locked away and has missed most of his youth. Until the last few months, he wasn’t even allowed out for a walk in the grounds, which changed after I publicised his plight on national TV and the papers last summer.
Since receiving the news that he will be released soon, Ryan is so much more settled, happy and content. Incidents of self-harm and frustration have virtually ceased and he is communicating better with staff.
My son still has a bright future ahead of him, and all I want is for him to be happy. That is all any parent wants for their children.
I want him out of hospital as soon as possible – the pace at which these things happen is desperately slow – so he can begin his life all over again. Psychiatric hospitals and their detention of autistic and learning disabled people should be stopped immediately – the environment couldn’t be more wrong for them.
The transforming care programme was the beginning, now let’s hope the proposed reforms to the mental health act end this practice for good.
Do you have a story you’d like to share? Get in touch by emailing [email protected].
Share your views in the comments below.
In this exciting new series from Metro.co.uk, What It Feels Like… not only shares one person’s moving story, but also the details and emotions entwined within it, to allow readers a true insight into their life changing experience.
Source: Read Full Article