Welcome to Autismland

 

13 weeks ago, we moved to a little place called Autismland. It’s a strange place, a community within communities, a land that recognises no international borders, that comprises people of all nationalities, whose territories stretch all the way around this world.

 

We aren’t natives, Hubs and me, but we found out that Melon is. So we moved here to be closer to her in terms of understanding and awareness. We moved here to learn her language. We moved here to bring her into the embrace of a community that would love, understand and accept her.

 

The truth is, we could probably have moved to Autismland a bit sooner than we did. We spent a good few months sitting in a field just outside the gates. This field is full of tents, and the tents are full of people, families, parents.
Some of them are stuck there waiting for some official – a Doctor, a psychologist, whoever – to stamp the paper work that makes them or their loved one a legal, official resident of Autismland. Some of them have been fighting to get this for sometime. They have visited Autismland many many times on a travel visa, but they still can’t remain there as permanent residents and their lives are more difficult because of this.
Some of them are stuck there while other issues (health, educational, psychological) that could prevent the person being diagnosed as an official resident of Autismland are ironed out. We were in this category for a while, when tests revealed that Melon had had a long standing glue-ear issue and some hearing loss. Those issues resolved themselves last Spring.
Some of the people are there because they are scared of Autismland. They are scared of what it could mean for their future, for their families, for their loved one’s development, life chances and potential independence. They are caught up with guilt and fear. They have (or could get easily) all the paperwork they need to step through the gate, but still they hold back because they are unsure and fearful about what they will find when they enter. For a few months, we were in that category too.

 

But on 9th October we left the field and entered the gates.

 

Our welcome was a celebratory one. A “welcome to the club. Here’s a barrel of coffee” rather than a mournful “you too?”. The people here laugh a lot. Often at stuff that other people wouldn’t “get”. There is a sense of hope, of unity, of community palpable in the air. There is discussion, there is learning, there are differences and disagreements that cause rifts from time to time. There is a drive and desire to spread whatever understanding and knowledge we can between each other, and to anyone outside Autismland who will stand still and listen. Heck, even if you’re walking away people will shout at your retreating back. Because everyone here has grasped the basic point that sharing, educating, supporting and humour are pretty effective at breaking down those fears that keep some people sitting in the field outside.

 

So we have been here 3 months. And I’m starting to learn the language. The language of health and education terminology, the liberal use of acronyms, the language of the successful benefits application, the language of multi-agency meetings.

 

But more importantly, I’m starting to learn the language of Autism. A language that transcends mere words to incorporate movement, behaviour, sound and context. A language that is complex, rich and expressive.
For example: recently, I was at a cavernous soft-play facility near my friend’s house. We both had our toddlers as our eldest children were at school. Shortly after we arrived, a small-ish party of school children entered. They were of mixed age, gender and race. My friend and I pondered why they were there – couldn’t be a year group trip – too many different age groups. Couldn’t be a whole school trip – the group was way too small.

 

Then I “heard” some language. The language that I am beginning to learn. A boy, aged about 11, with his face pressed hard against a rope mesh. Happy, contented, at rest. Without using any words I could hear him say “the pressure from this mesh on my skin is the BEST thing I have felt all day”. The 8 year old boy running and climbing around the equipment with his classmates, showing every sign of enjoyment but with his fingers curled back at all times to minimise accidental contact with any of them – “I’m having fun but I don’t like to touch”. The girl with ear defenders on who was sitting crying, the teacher who sat close to her and talked a little, but didn’t touch or make eye contact with her – ” I’m overwhelmed. I don’t like touch or eye contact, especially when I’m already overloaded. I can’t process much of what you are saying, but your presence here makes me feel safer”. The 13 year old girl who stood next to me and Boy at the toy lighthouse, flapping a little and vocal stimming – “there are DIAMOND shapes at the top. They LIGHT UP!! Do you SEE them!!”. They were all natives of Autismland, on a school trip before Christmas, making the most of a play facility at it’s quietest, least overwhelming time of day.

 

I still have a lot of language to learn, and I mess up all the time. This last week, I was trying (pretty unsuccessfully) to engage Melon in a short conversation about school. I’d asked a couple of questions which were met with either silence or a vocal stim that I couldn’t in any way relate to the question I’d asked. I tried a final question – “did you read a book today?”…cue more scripting, pretty hard to understand because Melon was bending/extending the sounds of some of the words as she often does (eg “gate” becomes “gay-uh-Tay”). Then I picked out some stuff I recognised… “..mouse…dark wood. owl saw the mouse, mouse look good”.

 

Then I got it. Melon was quoting lines from “the Gruffalo”. She was answering my question by repeating lines from the book, using her scripting to convey information. And emotion, because she was clearly getting a bit annoyed at how slow I was being and that was clear in her tone…
So I said “Well done Melon, you read the Gruffalo at school today!! I love that book too!”. And then she gave a grin of pure joy, and a big hug that said “finally woman, you hear me. Thank heavens, I’ve been finding it really hard work to get through to you today!”.

 

Someone I used to know once said that when you move to a new place the “firsts” are always strange: the first Christmas, first Birthday etc.., but that when you come to the anniversary of these, you can look back and realise that you’ve built a whole year of memories and associations, and all of a sudden you start to feel at home. We just had our first Christmas in Autismland. We’re starting to find out feet. Various people have helped us to hold and read the map, and have hauled us up by the armpits when it looked like we were going to slip over. I am full of hope and optimism for our journey through 2014, and I hope that by the time it gets to next Christmas I can look back with a realisation that we are all exactly where we are meant to be. At home in Autismland.

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