I care for my 41 year old daughter and always have due to her severe autism.
No one thinks they’ll get a baby with a disability. When she was born I thought, it’s okay, I can deal with it. Then you realise that no one else is going to fight for this baby, then child, other than you. You lose the person you were to become this tiger mother you don’t want to be, because everything needs to be fought for.
My daughter was in her late teens when she was diagnosed. We lost all those earlier years. They would have picked it up now, but they couldn’t then.
At playgroup, children learn about things like taking turns, but autistic people can’t understand. I ended up taking her out of school and home educating her. School was too much for her – it was too noisy and too overwhelming. Autistic people sometimes say they have ‘wrong planet syndrome’ – they feel like they are an alien from another planet.
I was at Parliament for the launch of the Autism Bill 11 years ago. What has changed since then? Very little. So much work went into creating this bill and then nothing changed – it’s heart-breaking.
I’ve spent the last 25-30 years telling my daughter that other people will rise through the ranks and things will progress, but I’m shocked to see those people are fighting the same fight that I was for the same things. Government wants quick, easy and cheap solutions. They want to do the least they can get away with. There’s a lack of vision and knowledge.
We moved to Dorset seven years ago. The first social worker I saw chatted for 15 minutes and said there was nothing she could do to help.
The support offered varies depending on the council, social worker or individual you’re dealing with, but generally I feel that healthcare professionals don’t have enough training in autism.
Many think that everyone with autism is the same. It’s not difficult to find information – the National Autism Society have a professionals section on their website with lots of easy to download information.
They want autistic people to make friends and spend time with other autistic people or people with a disability. My daughter struggles socially but is very intelligent –groups that are for people with disabilities, including learning disabilities, generally aren’t suitable for her. The only friends she has ever made have been people who aren’t autistic.
The only way an unpaid carer can be genuinely supported is by having the right package of care in place for the person being cared for.
It’s not easy being a carer, but it’s not the fault of the person who needs care, it’s the fighting you have to do all the time. It’s the horrendously stressful PIP forms and people who make it difficult that are the problem.