Many moons ago, early 1988 to be exact, I started my first job in what was then called the caring sector. This was before anyone in my family had been diagnosed and would be the first time I ever heard the term autistic.
The position in question was at a place laughingly described as a half way house, it was in fact a dumping ground for a variety of people who had just been turned out of long term psychiatric units and were not for one reason or another felt suitable for a home based type ‘care in the community’. It was a very mixed bunch of people with a wide range of needs from those with long term mental health issues such as schizophrenia, to long forgotten students who had had break downs 40 years before and never been returned to their families. There were also those who wouldn’t of been classed as having mental health difficulties, including individuals with Down’s syndrome and others who were autistic.
When I arrived at this, well let’s call it a unit, (it was in fact a large, secluded run down Edwardian house) at not quite 18 with no qualifications or experience it was clear it was not in fact as it purported to be ‘a place to develop skills and introduce individuals to the wider community,’ it was in reality more of a prison. When I asked about trips and making links to the local community, I was told staff had been embarrassed by residents behaviour and the community was hostile so it had been stopped. So obviously I thought that was perfectly acceptable and left it at that…..
No I could and did not. I created links with the community, we had skittles nights at the local pub, I started a weekly social night and arranged shopping trips and outings to near by cities. There was however an element of truth in what was said about the hostility of the general public and often those I supported were taunted or we were asked to leave or I was shouted at about how I could bring ‘people like that’ into their town centres.
I consistently challenged these views in whatever way I could and eventually gained supporters. Staff views were hardest to change, there was a culture of physical restraint and punishment and an over use of tranquilisers to keep ‘residents’ compliant. However over time many who did not like the changes I made left and one or two new staff arrived with views more similar to mine of equality, decency and right to quality of life for all.
The strain eventually got too much and I left after about a year and a half. I reported the privately run institution to the local authority as my parting gift (for a myriad of breaches of duty of care as well as human rights abuses such as withholding money and possessions).
Twenty years later I was to learn from a wide eyed, gentle and positive girl I met in the pub and who happened to work at the unit that it had been the turning point and that the place had transformed. She was able to tell me many of the individuals I had known had either moved on to more independent lives or were still there but with jobs and social lives, supported but fulfilling their ambitions. It was the best Christmas gift I ever had.
These days do not generally lock Autistic people away, do not generally shout at them in the street, people do not generally feel that autistic or disabled people should not be seen however just because things have improved a great deal does not mean there is not still room for improvement. In todays world as an autistic person you are far less likely to be;
Locked in institutions – although it does still happen even against the will of parents where suitable provision is not available in the area. It can be extremely difficult to get their child returned (I am talking about actual children and those who are now adults). Some even die in the ‘care’ of these institutions.
Mocked in public – however Autistic people especially those who are no verbal are often though of as less or talked about in sympathetic patronising tones. Autistic children and adults are often bullied for being ‘weird’ or not conforming to he ‘norm’. Autistic people have even been beaten or murdered purely for being ‘different’.
Deprived of opportunities – these days the majority of autistic children attend mainstream schools and on the surface are expected to achieve in the same way as their peers are, they are in titled by law to ‘responsible adjustments’ to help them achieve their full potential. However the term reasonable adjustments is a lose one and can be interpreted in many different ways, there is just not the funding available to make the adjustments needed for all children with a SEN to reach their maximum potential. Schools by their nature are generally not autism friendly as they are a sensory and social nightmare. Work places also often are not willing to make adjustments or see beyond an awkward job interview to the persons full potential and so only 14% of autistic people are in full time employment.
Experience physical or pharmaceutical restraint – While over all drug use for keeping autistic people compliant now they are no longer generally confined to institutions may of declined, autistic children as young as 4 are taking medications just to tolerate the school environment. In America, and to a lesser extent in this country, dangerous quack ‘cures’ for autism are being peddled and given by some desperate and ill informed parents. Sadly physical restraint is still used in some schools especially specialist and residential placements, there are many advocates fighting for change and things are slowly improving.
Have there views or wishes ignored – While general attitudes have moved forwards and rights of all people accepted as being equal, autistic children and adults are still persuaded into interventions they do not want or are harmful to them or their medical needs are overlooked and their voices not heard. There have been many cases of autistic people being harmed or even dying because they have not been listened to by professionals.
I believe the following things need to happen so that I can be staring into the disbelieving face of a 20 year old in twenty years time telling them how bad things used to be for autistic children and adults;
- Autism needs to be seen as a different way of thinking, not as a wrong or broken way of perceiving the world.
- Autistic advocates, consultants and advisors need to be present in our schools, work places and health system to insure ‘reasonable adjustments’ are being made, self worth of autistic people is being promoted by respect for it as an identity, and that prejudice is rooted out and exposed.
- Good quality local provision is prioritised with an emphasis on keeping families together.
- Environmental factors, Personal choice and the best interests of the individual are always considered before prescribing drugs to autistic children and adults.
- Restraint is never considered acceptable excepting the most extreme situations where there is serious criminal intent or danger to life.
- Lack of funding is not used as an excuse for lack of equality.