An Autistic Letter to the Senedd

I don’t have a loud-hailer or a soapbox. I don’t have the ability to build a public, social platform. I don’t have the structure to make you listen.

But I do have a voice. 

I started off meek and mild and questing, the more I learned the more frustrated I got, but I still wake full of hope. I still believe. I still know things can be better.

This week the Welsh Assembly, a beautiful, swoopy glass building, voted against an Autism Act for Wales. 24 to 27. So close. So few minds to change to change my world, but change they did not.

Why oh why would we need such a thing? An act just for autism? An act of autism? An enactment of autisming?

Because of me.

Because of people like me. Because of my autistic community, my people and their families and carers. Because it matters.

Do you know how much support is available to me in mid-Wales? Right here and now, today, as an adult with autism?

There is nothing. Not one thing. No occupational health services for autistic people (no specialists you see), no counselling services for autistic people (no training in relevant adjustments), no support groups (too functional), no support in work (not functional enough).

Why do we need an Autism Act? Why do we need any legislation that offers support and constructive solutions? Because it changes people’s lives for the better. Because it helps. Because suicide rates in “high functioning” (I hate that term) autistics is nine times that of the general population, but there’s less support available than for all you Neurotypicals out there.

Because whatever we have now has resulted in nothing. No safety net.

I am the eternal optimist. I will keep hoping. I will keep using my muffled voice, because there are those amongst us who need me to speak.

Wales, I love you. I adore you. Your people, your greenness, your mountains, your valleys. Only you know my hiraeth when I’m not here. Nowhere undulates like you. Nowhere is warmer and kinder. But you’ve let me down. You’re letting me down every day. 

And we need you. 

27 thoughts on “An Autistic Letter to the Senedd

  1. I sympathise conditions are no better where I live. Yesterday my almost 18 yr old had the conclusion of her ASD assessment. No conclusion. She is a ‘mixed presentation’ So the adolescent assessors are passing her to adult services, a year long wait. They told me it is a ‘watchful waiting’ for issues in her Transition to uni. I feel I am standing outside the A&E of support in case haemorrhaging begins. Luckily I persuaded them to persuade her to research it herself. I am hopeful she will realise her distaste for grooming, lack of girlfriends, aches and pains and fatigue are her traits of ASD and abandon her own solution – that she was meant to be a boy. Without Acts such as proposed, enhanced services and research the hidden army of girls with autism will travel a heartbreaking road. One of the most surprising things was they said they could not give her a diagnosis as she does not think she has any problems. Again with the girl thing – coping strategies, accepted even if they are in themselves symptoms,

    Liked by 1 person

    1. So very difficult. The idea of throwing her into the transition between school and university and seeing if she sinks or swims is terrifying. Many universities do offer brilliant support to those without a concluding diagnosis though. So hopefully she will be ok.

      Many many autistics have gender fluidity or similar. I myself am a woman who has no concept of what being “a woman” means.

      A year is a long time. I very much hope it all goes smoothly ūüíź

      Liked by 2 people

      1. I don’t have gender fluidity (or not to my mind at least). But I am a woman who doesn’t wear make-up, doesn’t understand people’s obsession with clothes, shoes or hair (I wear clothes and shoes, and brush my hair, that’ll do), and I find men a lot easier to understand than women. I have few friends (but enough) and they are mostly people who make an effort to be friends with me, and I appreciate them for it. I am married though (to a man, also Aspie) and I am about to have a baby, so definitely female.
        I also used to be a support worker for teenagers with autism, and have a sent a few off to uni (including ones who wanted to go without declaring their diagnosis) and they all seem to have got on okay, so my fingers are tightly crossed for your daughter (at least uni is a lot less judgmental than college, people are accepted for who they are mostly, at least, that’s how it was for me).

        Liked by 1 person

          1. I don’t think the Senedd would count the signature. I don’t know if you can sign it anyway. As long as you’re honest about where you are, I can’t see a problem (but I don’t know for sure, sorry).

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    1. Good plan! There is a list. It was Welsh labour who came out in force against it. Apparently we should be waiting to see if existing plans work. Plans that haven’t worked since the Senedd was set up!

      I’m terrible at contacting people, but this is too important. Today’s spoons will be spent on contact!

      Liked by 2 people

      1. I think that this might be one where the old personal handwritten letter to the offending naysayer comes in handy. Also – and yes, I admit this means more research – how about finding the following facts: 1) % of population that is autistic, 2) another group(s) that constitutes a smaller % who do get assistance 3) the people who voted against autism assistance, but either voted for assistance and/or have a person of the other group in their family/friends. (I see an excel spreadsheet for this….)
        Then write to this person/persons who voted that way and ask them why* they voted against autism assistance (without letting on you’re autistic, perhaps). If they say it’s too small of a group to be worth it, you’ve caught them with their pants down, so to speak. Most especially if aren’t going to be empowered to contribute to society as a result of the assistance. If they give other reasons, you have the information of exactly how you need to adjust their viewpoint. If they don’t respond, you still have ammunition to call them on either poor judgment or nepotism.

        Liked by 2 people

  2. How frustrating! Can I reblog so more awareness for Wales can be spread? I know what it is like to live in a service desert for autistic adults who have an I.Q. above 70 and need peace and quiet to stay sane and contribute.

    Liked by 1 person

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