Hey, I Have That!

Rosie here, me and Mum are taking it in turns to blog.

Sometimes people ask me what it is like living in such a strange family.  To me it’s not strange at all,  its all I’ve ever known.  I would have said ‘To me it is normal’, but after my Tedmed speech, ‘who would want to be normal?’ seems to have become my new catchphrase!

Mum is obsessed with the subconscious.  She is a hypnotherapist and is always going on about our consciousness-filter.  We let in what we want to, keep out what we don’t.  If we are feeling down our filter cuts out all the good stuff, so that we can only see the bad.  If we feel good, our filter gets rid of all the bad stuff, and the world is great.  I’m not sure how much of this stuff I believe, but I know that when I look at my brother and sister, I only see their good qualities.  Most of the time.

Daisy is great.  She is the pretty one in the family for sure.  Her laugh is like a tinkling bell and everyone who sees her says ‘Aww, so cute!’ – I could be jealous but I think that too.  Lenny does whatever the hell he wants, so I could be jealous of this as well.  If he gets into the kitchen all hell breaks loose; he might turn the taps on for the pleasure of seeing the water dripping over the side; he might get a full bag of rice (mum gets massive ones from the Asian supermarket) and break it open, scattering the rice everywhere. He loves doing stuff like this, does Len.  Who knows why?  All I know is that sometimes if we join in his activities instead of telling him off it’s great, like a food fight or something.  He knows what he wants to do and his isn’t going to let a little thing like social norms get in his way.

Dad  is great, he works hard for us, and also, when he gets home from a hard day’s work, if he sees Mum all tired and harassed, he takes over, like takes Daisy and Lenny out swimming or to the park or something, so that we can have some quiet time.  I  know that its hard for Mum and Dad, looking after us three, but they pull together and support one another.

So this is the story.  Lenny was diagnosed with autism when he was super small, like three years old, though it had been very obvious since he was two.  Everyone was relieved when he got the diagnosis, because the waiting was over and Mum and Dad could get more support.  We got a lovely book called ‘Little Rainman’ which explained autism from like a child’s point of view.  Though I was really young (seven, nearly eight) I got it straight away.  The book was told by a little boy called Jonathan (though he couldn’t speak, his Mum had given him the words, just like we sometimes have to do for Daisy and Lenny).  The book explained how he loved to spin, how he was afraid of loud noises, but liked to make even louder noises.  How he sometimes felt uncomfortable looking into people’s eyes.  I read the book once.   ‘Hey, I have that!’ I said to Mum.  Mum looked at Dad and Dad looked at Mum.  It was like ‘oh’.

About a year later I got my own diagnosis of Asperger’s Syndrome, but from the very start the condition was explained to me in a positive way.  All the greatest movers and shakers in history had Asperger’s apparently, Mum and Dad told me.  Einstein, Eddison, Mozart, Di Vinci.  How could I think of it as a disease or a disability when it was described to me like this?  As I got older, I learned that unfortunately some people are challenged by difference, and want to look down on anyone who doesn’t fit. I don’t believe that the world HAS to be like this, though.  My vision of the world that me and my siblings will grow into is one of acceptance, love and celebration.  Who’s in? ♥

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12 thoughts on “Hey, I Have That!”

  1. Thank you for sharing your family life and family history with us.
    You’ve really got wonderful, lovable children. In my opinion it is really important for children with additional needs to receive acceptance and love in their families and you support them and do your very best by accepting them for who they are instead of trying to fix their autistic behavior or forcing them to fit social norms.
    I’ve seen that BBC program “My Autism and Me” and the sequel “Through my eyes”, where Rosie talks about her family and her own autism. I received a good impression of your family that completely fits to your description of all of them.
    Especially Rosie is really brilliant. She is shown to be warm-hearted, highly responsible and trustable. And she obviously is a loving sister for her siblings. I’m quite sure she would not have been so impressive and self-confident without the love and respect she receives in your empty house full of love.
    In my opinion, they made an excellent choice by selecting her as a speaker for that TEDMED event. I hope that there’s a video recording from her appearance at TEDMED and that it will soon be available on the TEDMED-homepage. I would like to see that, and I think it might be useful to other people with or without autism, too.

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    1. Thank you for your kind comments Wolfgang. I’m so glad that you share Rosie’s positive approach to autism. I personally prefer people with autism, I find their company very relaxing and don’t have to stress about hidden agendas! I think Rosie’s speech is available on TED.Com from tomorrow 🙂 x

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      1. I only received “The Daily Journal of Arabella Crumblestone”. Thank you for your nice personal dedication.
        I thought that “The Unfinished Stories” might be temporarily out of print, so I didn’t want to ask for it. But I found a copy elsewhere and bought it, so it doesn’t matter. I really liked both books and Rosie’s illustrations, too.
        If both books are still available, I’ll order one more copy of each of them for my niece. I’m sure she will like them, too.

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      2. Rosie’s speech is now available here:

        It‘s really as brilliant and inspiring as I expected.
        But the most amazing thing is that she has found a way of nonverbal communication with her siblings. I know that nonverbal communication can be really a problem for people with Asperger Syndrome. She gives me hope and confidence, that if I’m really interested in communication with a nonverbal person, I may find a way, too.
        Can I subscribe for the book she’s writing by now? I would like to be the first to order and buy it.
        By the way there seems to be a bug on http://www.sharonkingbooks.co.uk/book.htm. Whenever I try to order “The Unfinished Stories” the order summary shows that I’m going to order “Arabella Crumblestone” instead.

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  2. HEY, I HAVE THAT, too.
    But it took me more than 50 years to find it out by myself. So my story is a bit different from yours. When I was a child, I did not have a book like “Little Rainman” and little was known about Asperger Syndrome. My mother sometimes supposed me to be “nearly autistic”, but at that time, she had only a bit knowledge about classic autism and probably did not know, that there was a milder form of autism called Asperger Syndrome. It was quite obvious that I did not have classic autism, so we never went to a doctor and forgot about it.
    But last summer, when I saw a popular scientific program about Asperger Syndrome in German TV, it became clear to me, that I HAVE THAT, too. I made some tests in the web (AQ, EQ, SQ, Reading-Mind-in-Eyes, …) and all of them confirmed that I probably had Asperger Syndrome.
    I began to search for more information about autism and especially about Asperger Syndrome, and so I found that BBC program “My Autism and Me” and the sequel “Through my eyes” on YOUTUBE.
    Although it was made for children rather than for adults, I liked it very much. The BBC-team really did an excellent job: they gave brief, but useful information about autism and choose interesting and very different persons with autism to be shown. But most of all I liked your positive kind of thinking about autism.
    However, at first I was not quite sure, if you really knew what you talk about and if you had any personal experience with the bad sides of autism. I presumed that everybody would like to make friend with a nice girl like you and could not imagine that you might have any problems with other kids. Excuse me for thinking so. It was due to the fact, that I first saw a much shortened version with German subtitles, where they had left out the important part, where you talk about the other kids laughing at you when you’re screaming or crying. When I later saw the complete version, I immediately understood that I was mistaken and you had really considered in depth bad sides as well as good sides of autism and honestly meant what you said: “Although he can be a problem, I wouldn’t sort my autism for anything. He makes me, who I am. I just wouldn’t be the same without him.”
    I began to think about it and finally I absolutely agreed with you. Of course there are several symptoms of autism that I do not like at all, but my autism also gives me special skills and abilities and my own unique kind of thinking. The positive skills due to autism outweigh the unpleasing symptoms and I cannot have one without the other.
    In my opinion, it was your idea of presenting autism in a positive way that was the decisive factor to make “My Autism and Me” so successful.
    Last month I got my own diagnosis. My self-evaluation has turned out to be right and was medically confirmed by a doctor. With your appearance in BBC you helped me a lot in accepting my own diagnosis and in finding my own way of thinking about it positively. Autism is nothing to be ashamed or afraid of. I HAVE autism, but I DO NOT SUFFER from it. I may sometimes suffer from some unpleasant symptoms from autism but at the same time I benefit from the positive effects of autism.
    Hold on to your dreams. You are absolutely extraordinary and you can contribute to change the world into a place with more love, acceptance and celebration. I’ll do my very best to contribute, too.

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  3. It’s really inspirational, all the stuff that you have done is incredible.

    I remember reading the story about you diagnosing yourself when I was looking into getting my own diagnosis several years ago. It really made an impression on me then, and it’s actually really nice to have your name pop up again like a lost friend. 🙂

    I’m thinking of starting my own blog to help me write down some of what’s going on in my head.

    From one aspie girl to another

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  4. Just saw Rosie’s video on TED! I’m so happy to hear her talk about her inner world. It took us 3 years to figure out that all of the wild moving about and strange noises our son made at odd times were manifestations of his intense daydreams, which he had been doing since he first came home from the hospital. I’ve only ever seen one other person demonstrate that characteristic, a mute autistic young man who was at a skate park but whom I could tell (through my experience with my son) had the richest skateboarding prowess/experience in the world in his own mind. And his own mother didn’t seem to be aware of this rich inner life of his until I pointed it out. How many other kids have this kind of experience without others even recognizing it for what it is?

    We are only just starting to get a glimpse into what autism is and how it impacts people. As someone said above about himself, my mother says she used to tell people I was “selectively autistic”. I see so much of my younger self in my son. I have opted to homeschool him, in part so that he can feel free to be himself but also so that he can have the time available to him to develop this rich inner life uninhibited. My own life has been challenged in many ways, and I’ve naturally become a kind of anthropologist trying to discover the ways of the other humans around me. But I think the pressure I have experienced over my lifetime has caused me to develop a kind of locked-away, subconscious anxiety that regularly tears me apart inside.

    Rosie, I’m so happy for you and many others in your generation that the stigma of being different is being lifted so much more than when I was growing up. I hope that you and others are able to continue to help be that change in this world of ours so that we might all one day be accepted as we are for who we are. Let’s support peacebuilding, tolerance, anti-bullying messages, and acceptance of one another!

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