Claire was only diagnosed with autism in September 2010, aged 16, after 5 years of hell for her and her family.
Everything had changed when she had started secondary school – she fell and hurt her arm, the work got too much, and suddenly she lost the ability to speak, she talked of herself in the third person, and the behaviours and aggression became very severe.
As we lived in Mid Wales, and our family was over an hour away, it proved very stressful all around. After her loss of skills, there followed numerous hospital appointments and tests all across the county. We had numerous diagnosis of – anxiety, depressive episodes, early onset dementia (which unfortunately Claire overheard whilst in hospital), vascular dementia, psychotic (This was because her hearing is so accute that she can hear things long before anybody else), psychiatric, a badly behaved and spoilt child that needed to be placed on the naughty step in order to learn the error of her ways, and “autistic traits”.
Our grieving process was very difficult – only 2 months after she was diagnosed, she was able to attend an autistic unit, where the staff really seemed to understand her and her autism, and offered us plenty of help, support and advice. She was non-verbal at this point. Unfortunately, she was only there 8 weeks as the hour travelling in the morning, and again in the afternoon, affected her too much, her behaviours worsened and she shut herself down and proceeded to sleep for 22 hours a day. We were told she would die at this point, but we kept her alive by getting the minimum fluids possible into her. She finally woke up 4 weeks later, but things weren’t better, and the only option we were given was a hospital in Northampton, 4 hours away. We refused, as it was too far away, our daughter couldn’t speak, and we would lose her.
She went into a unit in Bridgend, where the staff were great, and Claire was happy (in her own world, but she loved it there – no pressures, plenty of room), but it wasn’t the right place for an autistic girl. This was when professionals said she needed medium to long term care, and although we wanted her home, we needed some respite, so we agreed although we stated that she would be able to come home as much as she and we wanted.
Her transition to an autistic school started, but a week before she was due to go there, we were told there was a problem with the place, and would we look at an autistic college. We weren’t happy, but went to visit the place, not too far away and still in Wales, and agreed that she could go there. She was there 10 months, and unfortunately there were serious incidents during this time – also, she became very depressed as although she wanted to come for a visit to see us, and we wanted this too, we were told she wasn’t ready. She was under no section, just a child who needed extra care!! She came home., and stayed 10 days, but the pressure we were under from the college to get her back was unbelievable. Our poor daughter also suffered whilst there – she burnt herself with a kettle, absconded twice across busy roads, cut her hair with scissors, a carer fell asleep in her bed, she was tied tightly in a blanket, and towards the end – close to her 18th birthday (when she thought she would be dead cos of the dementia diagnosis) behaviours began again, and she was removed from there because she was being restrained so much!!! She was then placed in a unit, and despite her, and us asking for support at home, this never happened.
She became very bored there, and unfortunately got out once, and was restrained face down on a pavement, in broad daylight, and handcuffed, and put into the back of a police van. This was an autistic child, who everybody working with her knew that she had a severe problem with the police, and sirens. She was home a lot during her time in the unit, because she didn’t want to be there, didn’t think she needed a hospital, and didn’t have all the therapies, and fun things she had had in her college placement. The plan was looking for a “closer to home” placement for her, and we felt very disappointed and insulted when we were offered an autistic placement in North Devon. We are a very close family, and there is no way that Claire would manage being that far away from us, the people she relies on for everything, and trusts completely. She eventually went to a care home in West Wales in January this year, and it started well. Unfortunately though, the police had to be called after an incident when she was told she would be going to one place, and was taken to another (Claire doesn’t do change), and because she was close to the road, and aggressive at this point, and again she was put in leg restraints. A nurse in uniform entered her room, and now another more serious issue has happened, which has frightened Claire completely, and she is too scared to go back there.
She has been home with us for 2.5 weeks at present, and all is going well. Because of her late diagnosis, she has missed out on so much. She wishes she could turn the clock back, and so do we. Where was all the help and support that she should have had. Why was she locked up and taken away from us so many times. Why can we still not get the support and help she deserves? Why do we, as parents, feel that we are often ignored, and others always know our daughter best? As she said last week, “It’s the first time in 3 years that Claire has been allowed home for more than 2 weeks.” How heartbreaking. We are all now having to re-adjust. Her younger brother is enjoying the fact she is home, and wants to do lots with him, and she is certainly a breath of fresh air at the moment. She is determined not to stop us doing anything, and despite her fear of loud noises, supermarkets – for their bright lights, loud noises, she is trying so hard to come with us so we can all lead normal lives. Yes, we understand her, and know her perfectly. We are experts at makaton sign language, and widgit communication. We know her routines, and how she functions. It is so difficult to have to sit back and let professionals who barely know her write her plans, and only have input into them. This is why so much goes wrong. Thanks for taking the time to read it. Cath Dyer