Please read the following words which have been written by someone who helps look after an Autistic person.
T is severely autistic and also compounded by mutism. He is 23 and still lives at home.
Now imagine that you live with him...
T is subject to emotional meltdowns when confronted with surprises or unexpected change. He is very audio sensitive and the slightest noise can result in a meltdown that lasts for hours.
T hits himself when he melts down, hard enough to leave heavy bruising and concussion, nosebleeds and black eyes. This is a daily struggle.
Currently, T's home life is not the best situation. His father is the main carer, working with him 24/7 every day of the year without any breaks or respite. He gave up his career in IT to become T's main carer.
The living situation at home has caused a massive rift within the family, leading to the breakdown of the family unit.
My name is Ben, and I am the support worker (I prefer "Enabler") for T.
2 years ago, T's father, A, and I set up Autao, a care company with a difference. Our remit is to base as much of T's care as possible on his terms.
Currently, the system in the UK is medication based, dosing these individuals with a mixture of chemicals in order to keep them stable.
This is not right.
Over the last few years, I have seen changes in T's behaviour that are a result of giving T the space and Te to work things out on his own... changes that include ignoring noises, not reacting to external sTuli, being OK to having a plan change at the last minute. These changes may not sound much, but to a parent or carer, but they are huge for T.
Now, why am I telling you this?
The simple reason is that we have reached a plateau that we cannot progress from without your help.
T needs space and Te (literally) to help cope with his condition, and the authorities are unable or unwilling to help him.
We need a bit of land, away from the city, a return to basics and a place where T, and others like him can find the peace and inner calm that is being denied to such people.
Autao's goals are to help T and anyone else who has to live with the complications of autism, to live a naturally satisfying life.
Living with autism can be stressful, but with the right environment these stresses can be diminished.
We feel a return to basic way if living will help and living within the natural rhythms of nature.
We need you to help break the cycle of medication and counter medication that dominates the UK health system, we need you to help us help T, and others like him.
With the right conditions, we can provide all the support that T needs, without resorting to a chemical cocktail designed to ease the pressure on the parents/carers, rather than help the individual.
~ B (Enabler)
I have been talking to Ben and the father about a more holistic approach to caring for and the support of Autism, it's symptoms and perceptions. However, as Ben describes, a plateau has been reached which requires new thinking, action and support to move beyond the limitations that are have been faced. I hope to add my own words and that of the father in a later post.