Zoe (@notnigellajamie) to “I Wish I didn’t have Asperger’s” #AutismPositivity2012 Flash Blog

This post originally appeared at http://notnigellanotjamie.blogspot.co.uk/2012/04/autismpositivity2012-flash-blog.html and is reprinted here with permission of the author.

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#AutismPositivity2012 Flash Blog

Hello everyone.  I’m participating in the #AutismPositivity2012 Flash blog.  Here is a message from the folk behind the event:

The Autism Positivity Project has been co-created as a collaborative effort by the blogging collective: Thinking About Perspectives. We are a diverse group composed of parents of children with autism/autistic children, partners of autistic adults, and autistic adults, committed to increasing autism awareness and acceptance via open and respectful dialogue.

We share a common vision and goal. We want to have a positive impact on spreading understanding, mindfulness, and supporting those with social cognitive challenges or different ways of seeing and interacting with the word.

Our positive stance and openness to learning from our varied perspectives is deepening our understanding.

Here is a short explanation of the inspiration for the Flash Blog:

A couple of weeks ago, someone somewhere googled “I Wish I Didn’t Have Aspergers”. The phrase popped up in a blogging dashboard and struck the blogger as being particularly sad. She wished she could have answered.

We don’t know who it was. We don’t know where he/she lives. We have no idea if he/she found what he/she was looking for in that search.

We do know that search directed that person to a blog. We do know the searcher clicked on it in an attempt to find what they needed. And we do know enough about the challenges of autism to know that person is likely not alone in that sentiment.

So, we got to thinking. What would we say to that person? What if it was a kid, desperately trying to make it through tough years of intolerance and ignorance? What if it were a person who might never stumble across the amazing voices speaking for autism acceptance? What if that person thought himself/herself all alone? What would we say about the present? What would we say about the future? What would we say about happiness? And hope?

Each of us in the autism community –- self-advocates, parent advocates, friends and family, teachers, health professionals—we would all have different messages for #IWishIDidn’tHaveAspergers. But likely we would all try to send the message that there is a brighter future and that friendship and support are out there.

We are asking every blogger in the autism community to write a message of positivity to #IWishIDidntHaveAspergers. So that next time that individual (or another) types that sad statement into Google, he or she will find what they need – support, wisdom, and messages of hope from those who understand.

Here is my contribution to #IWishIDidntHaveAspergers:

I’m Mum to an outstanding almost teen with Asperger’s.  He is very smart, funny, kind, generous and loving and he is also very impacted by his condition.  Over the years, we have used a social communication intervention called Relationship Development Intervention (RDI) to work on some of the difficulties at the heart of autism.  He is now great at taking perspectives, having lots of meaningful reciprocal conversations, and really being interested in what other people feel and think about things.  This has enriched both his life and ours – he is much more connected to us and to the world.  He has got a ‘best friend’ (who also has Asperger’s) and he thinks about his friend’s point of view and accommodates his friend’s difficulties.  His friend doesn’t follow an RDI programme and so is much more rigid about things sometimes whereas my son will negotiate and (mostly) patiently generate options for solutions to a conflict, so that his friend doesn’t become anxious.  It’s really hard for my son to do that, which shows you how far he has come.

I write about how we have worked on his difficulties and the theory behind RDI on my blog http://notnigellanotjamie.blogspot.com

My son is still very impacted by his difficulties with emotional regulation, but we are working on these and he is already showing progress by stopping and thinking about things when he gets upset or angry.  In the past, he has just hit out, physically or verbally.

Following our mutual practising of emotional regulation using RDI, he’s even helping me with my own regulation when I’m angry or frustrated……I have the red hair gene, so that’s not infrequent 😉

It’s possible to use this kind of intervention to work on those parts of the Asperger’s that cause you the most difficulty.  My son says to tell you that it’s hard work, takes a long time, you will need to be patient, you don’t need to lose the parts of your Asperger’s that you like and it’s worth all the effort.

I know how hard it is when Asperger’s or autism really impacts on your ability to have friends, relationships, a job, to live independently and to have good emotional health and wellbeing.  It breaks my heart when I hear about Aspies who are slipping into mental health problems because they feel lonely and isolated but it doesn’t have to be like that.

Let’s not forget that there are people with Asperger’s out there who are living happy, fulfilling lives.

If you are someone with Asperger’s who doesn’t fit into that category then remember that you can change those parts of your condition that cause you difficulty if you want to.

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