June 2010 Member Q&A: amberlight (Ann)

Thanks, Elena - will respond later on today...

1. What's your story - how are you involved with autism?

I'm on the autism spectrum, face-blind, dyspraxic, major sensory issues & have arthritis & a spinal scoliosis. All fairly invisible, despite not being 'mild'. Hubby and son are on the autism spectrum as well, so we all care for each other, with sometimes mixed results! I run a company, but also work as an autism adviser to the Government, the National Autistic Society, the BSI Buildings Accessibility group on autism and related conditions, etc. Brilliant fun. Training, advice, info, general chats, policies...

Is life easy? Nope. Some days I wake up and think "arrghhh!". Is it worthwhile? Oh yes indeed.

2. How did you find Talk about Autism and how long have you been with us?

Almost by accident in an internet search about Treehouse, since it's such a well respected Charity. I've not been here long - maybe a couple of months, but I'm enjoying it.

3. What is your top tip to pass on to someone whose child has recently been diagnosed with autism?

Never try to guess in advance what your child will find fulfilment in, and never try to guess in advance what they can achieve. So many parents end up in despair because they think their child will always be horribly miserable and that autism is nothing but a trial. For many of us, it can have great benefits too. And there are so many new ideas and so much research happening. There is real hope of a good bit of happiness for everyone, no matter what their level of ability. Even today I was with 15 of the major statutory services etc, all working together for the first time to make a difference. It's happening.

4. What has been one of the most difficult encounters you've had with regard to autism?

Being targeted by predators. I count as a vulnerable adult, and alas I've experienced pretty much the worst sorts of behaviour from people over my lifetime. Bullying, violence, sexual abuse, being excluded, mocked, defrauded...terrifying stuff. There are no words to describe the cruelty of some people towards those on the autism spectrum.

5. If you had to describe autism in no more than 3 words, what would they be?

Brain design difference!

6. This is an extra question: Do you have any Summer holiday suggestions or advice for people with autism?

Plan ahead. The more we know in advance, the happier we are, generally. Pictures, plans, maps, schedules.

Holidays can be hugely stressful for reasons that are so difficult to explain to other people. Changes of location, different sensory experiences, routine changes, more or different social encounters, beaches with scratchy sand and searing sun and the noise of waves and the smell and feel of sun tan lotion etc... We may need to really pace ourselves and find ways to 'chill out' for a while. It helsp me to wrap myself in something when I get stressed out, and I can easily go non-verbal if I'm coping with too much.

Some of my best holidays are things that others would find incredibly boring, but they're my hobbies and I love them. If a family can work around a child or adult's hobby to some extent, it can be a lot easier for everyone.

And just for fun:

1. What would your dream holiday be?

Luxury yacht in the Med, a tanned crew to sail her, flat seas, long drink! (I wish!) :-)

2. If you got stranded on a desert island, what 3 things would you take?

Hubby (well, why can't he be a thing for the purposes of this, eh? ;-) ), the Bible, & a fully equipped mobile home. Is that cheating?

3. Tell us about something that you really enjoy doing.

Maps, since you ask. Love them. Can sit and read a map for hours. So many layers of history, place names, the way the landscape has been changed over time by the rivers, the historic buildings...it's just wonderful. And my brain can turn it into a 3-D scene and imagine the whole thing 'on the ground', which is a skill most brains don't have, as I understand it. There again, there's plenty of other things that most people can do that I can't do at all (crosswords, balancing, riding a bike, swimming, remembering names, knowing who my own family is by sight...etc), so it all balances out.

That's a wee bit about me, anyway. Ask anything.

Hello Amber,

I found your answers very interesting, particularly the liking of maps. It has always bemused me why people are often so bad at reading maps and can't envisage how they relate to the real world. When I was younger I would tell my mum, 'just over the hill, the road bends to the left and then goes over a river and then the first right after that' - and she would say, 'how do you know that from the map'...'because that is what it says' I said...

When I was a child I had an obsession with the floorplan maps of castles that used to be in castle guidebooks (they have been progressively dumbed-down over the years). I would then design my own castles for role-playing games, inspired by the great designs in real life (many of these games I played on my own or even in my own head, sometimes with 'geek' friends). If someone gave me a floorplan of a castle then I could easily visualise it in 3-D come to think of it! It is a visual language that I understand.

I also build 'maps' or 'webs' of concepts and how they relate to each other (so a link is like a road - or something like an interlinking tunnel in a sci-fi-ish landscape! Sorry - a bit beyond words!). Dates, locations and links to other sites cluster at certain points. In some ways it is a symbolic map of my own brain in operation (that makes sense actually, as it is the hardest the visualise - as it is like a map without edges). I think it is an attempt by parts of my frontal cortex and visual processing parts to understand itself, all going on beyond fully conscious control - all a bit tricky to articulate, but I try!

I can also ride a bike and swim (with head above water). I can't do the other things you mention though. I can do crosswords as long as they are not 'cryptic' - these make no sense to me at all.

My questions:

What type of map do you find most interesting and easiest to visualise and why?

Do you find it strange when people can't do things that you can do or does it suprise you?

Damian

Hi Snowdrop/Tracy,

When we first met, neither of us realised we were on the autism spectrum. It was more than 20 years ago, when the only diagnoses for autism that were handed out were for 'classic autism', and almost invariably for men. But we liked each other from the very first time we met. It just felt so comfortable and we have the same sorts of values and silly sense of humour. Love soon followed, and has stayed with us ever since. The diagnoses followed much later on when medical professionals started realising that we exist. Both of us were diagnosed within the last ten years. We assumed that our son (now nearly 18) would be like us, yes, but that long ago we didn't know what we exactly were!

I think the 'predator' thing has been difficult for me because I'm faceblind as well as on the autism spectrum. I really can't see the danger signs from people at all, or even recognise them, so I end up smiling at everyone and being friendly with everyone...and predators find that incredibly easy to spot and target. It's certainly true that some 80% of people on the spectrum experience bullying, violence etc at some point, but few will have my range of experiences I hope.

Do I get on better with other adults on the spectrum? Not necessarily. Depends on the person. I find I get very afraid of anyone who gets shouty or cross all the time, whether they're NT or ASC, but I have a range of friends now from every part of life - from extremely NT to extremely autistic and every point in between! Finding and making those friendships has been a huge triumph for me and hugely hard work, but so rewarding. I think people imagine that all autistic individuals are loners, shy, etc. I'm an extravert and love being with people - I'm just rubbish at getting it right, lol!

Being positive gets me through most things. I treat life like a long climb up a mountain. Hugely hard work, but the views are great and the feeling of triumph of overcoming each obstacle is marvellous!