Autism

It’s Autism Awareness week. It does feel like it should be Autism Awareness Week every week, every year until we finally start to make some real progress. Let’s not kid ourselves as we have are only just starting down that road.

This years theme is centred around inequalities. Inequalities that have become even more stark and exposed during the pandemic.

I tell you what is unequal. Bridge building. It’s always up to the autistic person to try and build those bridges. Our society, our institutions and too many of our communities are not interested. They see Autism through inaccurate stereotypes. Something to be ignored or brushed under the carpet. We’ve all experienced that approach. Individuality is frowned upon. People need to be forced into set moulds and templates.

Yesterday I was listening to the words of a really wonderful, unique and brilliant teenager. He was talking about his struggle with autism. His daily fight with inequalities and ignorance. Why was it so hard for people to understand. He was saying that every day he heard so many false stereotypes. But in fact he had a sense of humour, he liked having fun, he liked having friends, he had feelings, he cared. He was as valid as an individual as anyone else.

That lad wasn’t different he was UNIQUE. We all should be. It’s a better world for that.

We all should be welcomed and supported.

Help

This is my favourite place to put my hot drink mug. Just the right size. Nice height. Views over the farmers fields. It was kind of the people who built the house to put this here all those years ago.

Sometimes you just have to do things yourself.

I remember having a conversation with a leading clinical psychologist just before she retired. She told me about the UK Health Service and its approach to kids like Hawklad. She was so disheartened. Increasingly parents have to fight for any support. The Government (this government) are intentionally making it more difficult to access public services and receive support. The view from the top is that it’s not the responsibility of tax payers to fund these things. It’s down to the individual. The more you can afford the better the service you can secure. The psychologist warned me that as soon as Hawklad became a teenager the services which have been secured will start to ebb away. Reviews by ‘independent’ managers will suddenly find him just above the support threshold and he will be removed from the support list. When he gets to adult life she said the support would be completely gone.

Hawklad turned 13 this year so where do we stand…..

  • He hasn’t seen a Paediatrician in two years (was supposed to be every 6 months). He has dropped down the priority list and is at the wrong end of the waiting list.
  • Zero help from school on his dyslexia. The NHS is prevented from providing any support as it has to come from Education budgets now.
  • Zero help with his Aspergers. The psychologist was not replaced when she retired and the service is on hold (4 years now).
  • Zero help with his ADHD as he was reassessed as being above threshold.
  • He did receive physio therapy help with his dyspraxia. He was due to start a programme to help with his writing and keyboard difficulties. But two weeks before the programme was due he was seen by an Independent assessor (never worked with Hawklad before). After 3 quick tests which lasted 4 minutes he was assessed as being above threshold and the service was withdrawn.
  • Grief Counselling still officially waiting…
  • The last support he has is an anxiety counselling service. But sine his last wonderful support worker was moved on, the service has started to dwindle away. No idea when the next support session will happen. He’s unable to venture out of his house ot touch objects due to his anxieties BUT as he is not in physical danger then he is classed as a low priority.

Sometimes predictions come true.

Sometimes you have to do things yourself .