Peter is 47 years old and comes from a large, close-knit family. He is the youngest of five children. As Peter is non-verbal, his sister talks about Peter’s character and how he lives now.
My mum would have told you that she knew from day one that something was not right. Peter was a very quiet baby who grew in to an incredibly active toddler, knowing no fear or boundaries and rarely sleeping. By the time Peter was three my parents had been given a diagnosis for Peter of classical autism and severe learning difficulties.
I have never met any child as hyperactive as Peter. He was extremely agile and active but also isolated and aloof. His preference would be to crouch at the top of our garden, with his back to us, spinning a ball. He loved to watch it spin.
Peter had many special needs as a child. He had much challenging behaviour, he rarely sat still, was non-verbal and incontinent until he was 19. Nights were especially difficult. Peter used to spread faeces on his bedroom wall. My parents built a partition down his room to keep Peter away from the windows. He still loves to hit reflective surfaces. Peter was very vocal at night, spinning, laughing and playing without seeming to need sleep. In desperation, my parents tried medication which seemed to take the edge off the hyperactivity but even today he remains very active.
As a young teenager Peter developed epilepsy, which is controlled with medication. Peter seems to experience pre-seizure agitation but this is really a guessing game, even today.
Although my parents devoted time and attention to all of their five children, they worked incessantly to maintain Peter’s life within the family and the family home. Doctors recommended sending him away but there was never any question of this. Having grown up with Peter, I am certain that this was the right decision.
Peter went to a local special school every day. He stayed there for many years and even today lives in residential care with many of his classmates. Peter’s communication is entirely pre-verbal. He uses two Makaton signs but mostly his expressive language is actions. He doesn’t point to things to make choices but has started to use a few PECS symbols. I try to read Peter’s body language and vocalisation. Peter loves intensive interaction play and can show pleasure. He will also let you know if he doesn’t like something, often by pushing it away.
The best interaction I have with Peter is when we play tickle games or bubbles. On a good day, he will roll a ball back and forth to me and laugh and smile at hand puppets.
Peter seeks out deep pressure and will often hit surfaces very hard for pleasure. I am not sure how he perceives pain. There have been one or two fairly serious accidental injuries, but as long as the wound is protected, Peter doesn’t seem to feel the pain. I wonder if that is because he doesn’t feel the pain or isn’t able to express it?
With Peter, it is often a guessing game to understand his needs. Consistent staffing is crucial by experienced, knowledgeable, mature, nurturing people. I think Peter has a reasonable level of care but I would be very concerned if he didn’t have an advocate or family member who was actively involved in his life.
Funding is an ongoing, lifelong issue. My mum and dad fought for education funding, funding for his residential care place and at every step along the way. Things simply don’t change. This is a very stressful battle and I think the anxiety of it was detrimental to my mother’s wellbeing. The fight for funding for Peter continues today. Things are no different to 40 years ago, and that cannot be right. Even with such a high level of need, it is a struggle to obtain proper funding for Peter’s care. Currently Peter has no one-to-one funding, so his world keeps getting smaller and smaller. He cannot do many of the things he enjoys: fewer walks that he loves, less swimming and rare visits to soft play. Without an advocate and proper funding there would be a really danger of Peter’s life becoming very limited.
Perhaps there needs to be more people-centred training. Understanding autism is important but understanding the individual is what makes a real difference. Some people working with Peter. They go the extra mile to see Peter the person, not Peter the problem.
Peter is ageing and I wonder how much the younger key workers are really aware of this. This is not just about changing health needs, but about the range of opportunities they provide for the individual, about respecting them as an older person. I don’t see why Peter should have to go every day to day services; maybe sometimes he just wants to stay home and chill out with his music or DVDs. If Peter started to develop dementia, would we think it was changes due to his learning difficulties, the epilepsy or his challenging behaviour? It would be very hard to know.
Towards the end of my father’s life (he died when he was 84), on Peter’s last visit home to see his dad, my father said goodbye to Peter, telling him what a good son he’d been and that he would not have wanted him any different. And I think that is probably the best indication of how loved Peter is within his family. I do think that at some level Peter knows this.
Read more stories from older autistic adults.