As an adult with high functioning autism living in supported housing for many years, I had occasionally in the early days come across certain “professionals” who worked for my Support Provider & for the local NHS Mental health teams who branded me and others with a certain degree of pessimism and ignorance.
I remember suggesting to two individuals who worked for my (then) local council’s mental health team that residents were at the core of care plans and their voices counted as much as anyone else’s, they looked at me as if I was some kind of jumped-up arrogant upstart who had no clue what he was talking about. I overheard a conversation in which one of them basically said to the other “letting service users have a choice in their care packages? That’s dangerous, that’s like letting the loonies take over the asylum!” and that people who wanted change “are a dangerous, poisonous influence’’ and they both nodded- a similar comment was made by one of my Support Managers who said I had “a questionable and dangerous attitude” because I had expressed views that talking and creative therapies could be as effective if not better for improving a person’s mental health. I suppose back in those days anyone who said anything like that was judged to be having no idea what they were talking about.
In a way it was inevitable in promoting better mental health awareness that I would be “treading on toes” of people who disagreed with the work we were doing. We were bringing about positive changes and I know that that sometimes means you have to do that. Through the talking newsletter we gave feedback on issues that directly affected us and how we thought they could be improved or done differently. This was brand new territory for the care sector and these activities directly challenged the entrenched views held by some senior officials at that time.
The big tragedy was that it took an earthquake-like-event in the form of the Winterbourne View scandal in 2011 to shake everyone and the mental health system out of its entrenched complacency and to gradually start bringing about the long overdue changes that were so desperately needed even before the Panorama Documentary was aired on TV. If common sense had been followed these changes would’ve happened without the impact of Winterbourne View. It was the start of a very long and difficult process that over many years and over many leaps and bounds has brought about the improvements that people in care (and their families & friends too) need.
Sadly, since Winterbourne View there have been further sickening stories of abusive treatment meted out to vulnerable adults in care by carers who failed in their duty of care towards them & in so doing abused the trust placed in them. But the tiny minority of care staff who do abuse the trust placed in them by those who rely on them & their families know full well that they now face the full might of the law and will be severely punished when they’re caught & brought to justice.
Over the years my involvement with advocacy work for people in social and supported housing had started by doing tenant work. From doing the talking newsletter in the early days to being involved with a panel of other dedicated tenants scrutinising tenant services and providing valuable input to improve both services and attitudes. Those negative comments only ever inspired me further, because I knew that things and attitudes had to change for the better. About 3 years back I recommended replacing the jokes article with a quiz section to make the newsletter punchier (make it more dynamic) and to encourage readers to further develop their general knowledge. Tenants and support staff could work together to solve the quiz and thereby help build good and essential working relationships which are beneficial to both parties. The old jokes page contained “humour” being published that were corny and lacked any hilarity – in short it was outdated and had to go. So, we tried the quiz and today I still set the quiz for the newsletter with mainly general knowledge questions. This later developed into a puzzles section which sometimes takes the place of the Brainteasers – needless to say it still challenges the grey cells while still being fun and informative!!
Since I moved into outreach supported housing some years back I’ve been supported to maintain my tenancy and my wellbeing. For example, I need help keeping my accommodation safe and tidy. Staff also help my emotional wellbeing by raising any concerns they have for example if they believe I am becoming unwell either physically and emotionally. I’ve become more independent but there is always room for improvement so I am happy to take on board staff concerns because we have a good working relationship and I know it is always coming from a good place.
People with Autism do make a valuable contribution to our society by volunteering for charities, animal welfare, in libraries, museums, the heritage & tourism sectors & plenty more. We’re also employed in local amenities like local cafés, charity shops, tourist attractions & much, much more!! Even if someone with Autism volunteers a few hours a week in a local café or petting zoo they’re making a valuable contribution to their local community!! And many of our greatest artists, designers & scientists from the past & present have been reckoned to have at least some form of Autism. Many autistic people made a valuable contribution to their local community during the recent Covid-19 pandemic.
My goals for the future are to continue to advocate to ensure that all those who receive care and support packages have the best options presented to them for themselves and their families, partners and friends – because it’s always subject to change & improvement. I hope that autism awareness and the advancing opportunities for people with autism to enable them to live their lives to the fullest is always a priority for those professionals working in the health and social care sector. We all have a responsibility to make a positive contribution to our society – and people with Autism/ASD’s are no different from anyone else. All I have ever strived to do is to make a positive contribution to society and ensure all those with autism, mental health conditions and other disabilities have an opportunity to do the same.