If we were having coffee…

I’m writing this to everyone but especially those who blog on WordPress (and in this case follow the hashtag #weekendcoffeeshare).  I know from past experience of my post “I Stand Quietly” that WordPress bloggers can help things to go viral globally… and I hope that you might choose to make that happen again, but this time, it’s not my words I want to share…

If we were having coffee, today, I would probably mention that it is World Autism Awareness Day and, perhaps, you would switch off a little.  That’s OK.  Either it’s something that you are interested in, or not, I’m not interested in a lot of things that others feel passionately about…

However as bloggers I hope that you are interested in writings, feelings, expressions of self.  Humanity in all forms.  I hope that you understand the fear and loneliness of being misunderstood, discounted, ignored and the yearning desire to be heard, believed, accepted, included…

I know that if someone dismissed your words, out of hand, without justification or explanation; if someone argued against your words (feelings, beliefs, your very self) then you would be outraged, bewildered, devastated and more…

Below I have linked to the words of an autistic called Jim Sinclair, words that I admit I only discovered recently.  I wish that these words were more widely known, so that if/when autism enters someone’s life, they are already aware that it’s OK, specifically so that parents of a newly diagnosed autistic child know that it’s OK.

The most important thing about these words is that they were written in 1993 – nearly a quarter of a century ago – since then revolutionary things have happened in the world; the internet, blogging and mobile technology have given so many a voice, a community, access to information, knowledge, the ability to communicate and advocate and still, we are mostly frightened and ignorant about autism, spending fortunes on searching for reasons, interventions, treatments, cures, and worst of all, prevention.  Autistic people don’t want that, they want acceptance and support.

So please, sit back, enjoy your coffee and a read… let’s talk afterwards.

Don’t Mourn For Us – full version

Extract:

Autism isn’t something a person has, or a “shell” that a person is trapped inside. There’s no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person–and if it were possible, the person you’d have left would not be the same person you started with.

This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism.

Therefore, when parents say,

I wish my child did not have autism,

what they’re really saying is,

I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.

Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.

Don’t Mourn For Us – full version

Thank you for taking the time to read this.

If you would like to make a donation to the National Autistic Society who support and advocate for autistic people like my daughter Beatrix (the beautiful fierce tiger tamer in the image above) and our whole family, please click here.

Find more information about the #AutismTMI (Too Much Information) campaign, and how it feels to be autistic, and how you can help, please click here.

US readers: please note that autistic people would like you to Boycott Autism Speaks and choose not to “Light It Up Blue” this April, Autism Speaks spends 12% of budget on autism prevention research (eugenics) and only 4% on support for autistics.  For more info and how you can truly contribute to create a world where neurodiversity is accepted, then check out the Twitter hashtag #RedInstead. where you’ll find amazing #ActuallyAutistic adults to follow…  Thank you.

19 thoughts on “If we were having coffee…

    1. Lovely!!! SO important that our kids get their own voices heard as soon and as often as possible, not just us Mums… 🙂

      Bea has some writing going onto The Guardian online as part of the National Autistic Society #TMI campaign… April 8th – exciting isn’t it!!

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        1. Such a tricky thing. The journalist wanted a response to the first part of the ‘A’ word and advice on how to handle getting the diagnosis. So it was supposed to be reassuring to those who have just heard and are reeling. I wish there had been more in there about him – they kept in his aspirations and the fact that he is fantastic and funny and brilliant and there was a photo of us both but it was definitely, on this occasion, more about the parents. I hope one day someone will be interested in his story from his perspective. Tough sticking your head above the parapet – although it seems to have gone down OK, one woman found it patronising, which was my biggest fear. (That and hearing from your firey furnace man, which mercifully I did not…) It’s the one that sticks in my head more than anything. I seriously need to grow a backbone about this stuff but, as ever, I take my hat off to you for blogging. Have a lovely weekend x

          Liked by 1 person

          1. 🙂 it’s hard sometimes… Finding the right balance…

            Also I want to move my blog back away from autism to be broader more inclusive and hopefully a bit funnier not so hand-wringing as when someone bangs on it turns people off, me included!

            I hope and dream to build an audience who enjoy reading my blog and laughing and feeling a common bond, motherhood fails, conker kicking, being fat and hairy, whatever but people who feel a kinship to me for something other than autism, then on rarer occasions hopefully a message will hit home better… Xxxxx

            Liked by 1 person

  1. Wow!

    You always have the capacity to make me think; to challenge my thought processes and perhaps reconsider.

    I read Jim Sinclair’s article in full over a ‘coffee’ (was actually a glass of wine, but we won’t mention that!) whilst I was prevaricating over taking the newly acquired desk upstairs to complete my new work-from-home space…

    Not ever having had to deal with having a child, never mind an autistic one, but having had to deal with a miscarriage and knowing a No of people who have experienced still-births and early loss of an infant (cot death), I can relate to the grief of losing a child.

    I had never considered than many parents of autistic children continue to greave for the loss of the child they thought they were going to have (and all that goes with that) rather than somehow getting on with the challenge of parenting the child they do have.

    Reading Jim’s article, the films ET and The man Who Fell To Earth kept popping into my head: the way those ‘aliens’ were treated is perhaps not dissimilar to how people with autism are treated in our society?

    Definitely a thought provoking morning coffee 🙂

    Thank you once again

    Liked by 1 person

    1. And thanks for commenting as always – it means a lot to me not to “blog” into a vacuum!!

      I very much like how Jim puts it as I myself cannot deny that I have felt grief although I feel awful about that… but the key thing is putting it to bed quickly and completely.

      Parenting (and trying to start a family too) is fraught with challenge for everyone… there’s no guarantees in life…

      For me, my tears were more of relief and anger, that very belated acknowledgement that I wasn’t mad or a bad mother, that I was right to seek a diagnosis etc… so complicated actually to express it all.

      Also, I think it’s hard for any mother to bear that her child will experience hardship or discrimination, alienation, any kind of sadness or pain… for me my grief was not so much about autism but fear of the path ahead… knowing at that moment, that I could not protect her “from evil” as much as I thought maybe I could before…

      But she is a fierce and fantastic young lady, what was I worrying about!!!!! XXX

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  2. What a thought provoking post. I guess those words can be translated to any disability. It was very well written.

    I often take part in Parkrun. It is a 3 mile run or walk every Saturday morning. Given that i am blind, i need someone to accompany me around the course. I usually walk it. Anyway there was a time that i was asked if a young man could walk with me. He was about 14-15 at the time. He was autistic. I said yes that i had no bother at all walking with him. The Saturday morning came and we started walking. I had my guide dog with me so he was able to relate and told me about his dogs and things. My only problem was that in a way, i felt responsible for him. Unfortunately, he got a bit lost on the route. I felt i had to say something to the people organising parkrun. I just felt that there should have been someone there to point him/us in the right direction on the course. Me bringing this up didn’t go down well with the boys father though. I haven’t seen him since, and i do wonder how he is. I do feel rather guilty for having to say to someone about him though and i really didn’t mean for any hard feelings to be caused. I just felt for both our safetys, he needed a little more guidance on the walk.

    Sorry for the long rambly post. I hope my post isn’t offensive.

    Thanks for sharing those words though.

    Liked by 1 person

    1. Your post isn’t offensive at all, and it’s such a shame that the boy’s father couldn’t be more gracious… it’s so very important that we are open and able to talk about things, everything in life, especially things that make us feel worried or unsure.

      I am always happy to listen and answer questions and keep conversations going, even if it’s hard sometimes, never apologise for just wanting to have a conversation!!

      It’s other people’s limitations not yours!!

      Thanks for the thoughtful comments, Torie xxxx

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      1. I’m glad you weren’t offended. I got the feeling from the boys father that he pushed his son too much. In fact, when i said about how i felt the father should have accompanied us, or at least been near by should we have ran in to difficulties, i was met with “I showed him the course so he should know it” or something like that. The boy had done his Duke of Edenborough award, which is great, but i couldn’t help feeling that the father was living his life through his son a little.

        Take care, x

        Liked by 1 person

        1. Wise words – I see and hear similar all the time – especially with autism. People are frightened of it, I feel like some parents think it reflects on them somehow… I don’t know, I hope Beatrix is as thoughtful as you when she is older. X

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      1. my eldest son was diagnosed with Dyslexia just before the time we needed to look for senior schools. I had to re think how I saw him. And I came to the realisation he was my bright, intelligent, articulate son, who just happened to have Dyslexia.

        Liked by 1 person

  3. I don’t have a child with autism, but I work in a residential school with students with or on the Autistic spectrum (excuse the wording trying to keep it simple) and I also have a close friend with a young autisitic daughter. I really enjoyed your link to Jim’s words and it made me think hard about it all . I am sharing it as I think people should read it and it may help the way we relate to others. Thankyou for writing about it yourself. I enjoy your blog

    Liked by 1 person

    1. Moira, thank you so much for sharing the link.

      It is such a powerful piece of writing, gentle yet thought-provoking, I feel anyone would find it hard not to be affected by it… and yes, I completely agree that it definitely has the power to influence how we relate to others…

      (and thanks for lettting me know you enjoy the blog!!) XXX

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  4. Once again, another thought provoking blog. Jim’ s piece speaks volumes. Can’t believe how long ago it was written and how incredibly relevant it still is. It shows that there is still a long way to go in educating others I guess. I really identify with the grieving part but fortunately for us, we instinctively tried (& continue to try) to just enjoy (mostly!) our adventures with our son. After all, we all need advocates to help us along the way and everyone is different. That’s why humans are so fascinating…..
    Keep blogging xx

    Liked by 1 person

    1. Thank you! Yes, I believe that there is still such a long way to go… I would love to think it’s just human nature not to think too much further than our own realities, innocent ignorance… but then reading comments on a lot of autism-related articles published in the last few days, I’m quite aghast at the ferocity of some anti-autistic rhetoric, very sad… humans indeed fascinating (and so flawed in so many ways!!) X

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