Amber’s Autism Awareness 6 Years On

A story in a nutshell about Amber (Amber’s Autism Awareness) told by her Mum Christine, who has Fib. This is a warm-hearted story, and sometimes can bring you into tears and mad at society at the same time in length of time the powers that be to do something. 

Reproduced here with the kind permission of Christine. I have seen Amber and Christine many times. Amber is a beautiful child, all down to Paul and family. Can’t forget the time I took baby Oleg (Meerkat) to her home. I’m not sure what she made of it. Another Meerkat is ordered Amber, and on its way from Russia. April is Autism Awareness month where buildings in Leeds switch to blue lights like Leeds Arena last year and also is Amber’s Birthday.

Part 1. Amber was diagnosed with autistic spectrum disorder almost 6 years ago. We asked if she would live a usual life and they didn’t know, they couldn’t say if she’d speak, interact with anyone, ever learn anything or be capable of any independence. They gave us the name but not any answers .. Fast forward 6 years and everything they weren’t sure of she does brilliantly. She’s a fierce little miss who doesn’t let anything stop her, she has moments where she’ll hold a short conversation, her people skills although not typical are quite charming and she can put herself across when she really needs to. The key to this leap in development was all round acceptance from people at school and home. She has a fierce independent streak that you can’t break.. She goes with what she wants and what she’s learnt.. It might not be how the majority do things but she’s gets to where she decides she needs to be. She takes no notice of her diagnosis cos to her she is just herself so we don’t get hung up on it either. Autism Acceptance is what we should all be doing whether you can relate directly or not.

Part 2. Politically Correct – the debate is going on right now and not once have I heard anything about the future of my child. It’s not just about people on the spectrum it’s about a variety of disabilities where they are hit from all sides. They cut the NHS so specialist care is blocked by too long waiting list and not enough time or professionals to deal with our issues while our children continue to suffer and likely develop mental health issues. Schools don’t have the training or space or even budget to properly educate our kids, illegal suspensions or exclusions happen and no one bats an eyelid. Statements are sometimes used against us rather than for us at times dare I say ignored. A LEGAL document and no one cares. Children out of education for long periods of time missing out on what they say “every child has a right to” job prospects are low to none existent before they even get to that age because of stigmas, disabled people keen to have a full life used on training programmes then discarded once the unpaid period is over.. Who complains about that? Then you cut the benefits they need to live on, cut services that help them to cope, rob transport in an underhand way. Where are the policies for these things where are the solutions, I heard none did you? Why these issues at the bottom of a list, there are are productive people being wasted because of a label that isn’t properly understood.

Part 3, 2nd April Happy? Autism Awareness Day – so the whole month is dedicated to raising awareness and showing acceptance of autism. This day isn’t picked up on as much as maybe it should be and we made previous moves telling our stories on radio and in the papers but it’s not enough. I’m thinking this year we need to celebrate what already exists in our communities, this small groups that get on with themselves and make a difference to those that attend. We will post said treasures through the month and celebrate the acceptance side.