This time it really is about me!

I suppose its only fair to talk about who i am,what i am am and how i got to start this blog in the first place.

I have one sibling, my big bro is three years older then me. He is incredibily intelligent, interested in geography, travel, tv especially old tv shows and movies. His favourite actor is Steve McQueen, his favourite tv show is and old 60 ies favourite Land of the Giants. He is a massive music fan and i hate to admit this has much better taste then me, hes the one who was listenig to the Police, the Doors, Queen , Thin Lizzy while i was still playing my Take That tapes! He lives ina amazing house with his amazing friends ....and yes he has autism.And i would never ever change that..not ever.

He is one of the funniest people that you will ever meet, one of the most honest. I always say to my friends sometimes im scared to ask him something,..because i know he wont pull any punches, hes not going to try to save my feelings he's is just going to tell me the absolute truth no matter how horrible that truely is:)

How i came to write this blog is a pretty long story, when i was growing up i knew no one else apart from my brother with autism. Everyone else seemed to have perfect lives, perfect familes with no issues. Obviously when i grow up now i see that's not the case. In so many ways my family are much more fortunate than the many families i wished i could be like growing up. However, any sibling of any individial who has a disibility will tell you it is difficult. And often the thing that makes it so different is the struggle to get access to services, access to help anfd support and sometimes just the ignorance of people on the street. When i was a teenager i often looedk in vain for some support , some message from other families just to know that we arere not alone..heelloooo is there anybody out there..and i never found anything.

So up i grew... i turned 19 and began a job working in disibility services which i loved and adored but i never thought it would turn into a career as i thought.. hey this is a part of my life, i didnt want it to become my whole life. So i did an Arts degree in college and then spent a miserable misguided year working in a bank. God that job,,..i hated every second of it. I started to think about my previous job working with people with disibilities and how i loved it, how it never felt like a job to me soo i decided that was were i needed to be, that was the route i needed to follow.

By a twist of fate i ended up coming across a very specific masters programme based in Queens university, Belfast. It was a masters in Autistic Spectrum Disorders. I applied and luckily was accepted. This was to be the beginning of my new life:) It was so great because i felt i had all this experience with autism,i have lived with it ever since i can remember and i really wanted to share that experience with other families.

So off i went to Belfast (a city that i fell in love with) and completed my masters meeting some amazing people whose optimism and enthusiasm for working within the field of autism gave me such hope for the future of families like mine. Many of these people im still friends with today so thanks for being so inspiring:)

Within this masters i fell into the science of Applied Behaviouial Analysis. The aspect of this science that was so amazing to me is that it has research behind it, it has actual research to say that yes this has been used with poepl with autism and it has evidence which indicate that it has been effective. I started working within the field and once i saw the results from the science that gave me another push to stay in Belfast another year and give this whole thing a go.So now im half way through my second masters..training to be a behaviour analyst..exciting times.

And this blog,..anyone that knows me is aware this is something that i have wanted to do for YEARS! It took me a while to get the courage to put this out there and now im so happy i did. More and more research is being conducted on siblings and there is more and more support and awareness which is fantastic and finally i feel like i am putting out a voice..which.. in the words of a trainee behaviour analyst is very reinforcing:)

What is autism?

One of the most difficult questions that people ask me is this one,.. what is autism? The eternal question something so complex and misunderstood is difficult to explain in a simple sentence...even when you have grown up with it.

One of the most concise definitions though is that autism is a lifelong developmental disability that displays itself across a triad known as the triad of impairments. The triad of impairments consist of impairments in communication, social impairments and impairment of imagination. Lorna Wings excellent book "The Autistic Spectrum " introduces the triad of impairments in such an excellent and simple way, id really recommend it.

The triad of impairments are a complexity themselves, impairment of communication is fairly self explanatory - people diagnosed with ASD find it difficult to communicate . This leads to many problems especially when you consider how difficult it must be to be unable to communicate if you are thirsty and want a drink, if you are upset and if you are not feeling well. Imagine this if you could not even speak.

 Social impairment often leads to difficulty understanding social cues and social circumstances. Big group and social settings can be an issue here. Finally impairment of imagination, this can  led to the difficulty with play we often see with children lining blocks and cars in rigid rows. Imagination impairment also may led to issues relating to imagining the future and making plans, or even not being able to imagine what another person may be feeling if they are upset or not understanding the consequences of their actions if they are upset and lash out.

Learning about the triad was something that really helped me understand my brother and why he may get upset and frustrated. I often think if i find it difficult to cope with sometimes what must it be like to live with this?
That's why i think its so important to get a proper understanding of autism out into the community, its not Rainman, its not that easy. However if more people understand the complexities of what autism is,.. they may understand more of how difficult it must be to have it.

Hello

Hello all!
The focus of the blog is tp provide a source of informantion for siblings of individuals diagnosed with an Autistic Spectrum Disorder.
I myself have a 30 year old brother with autism and have felt that as a group siblings have always been neglected with it comes to information about autism.So this this blog is my small contribution to help that.Hopefully if i can make even one person feel like they are not the only person in the world struggling with this feel like that they are not alone, thats there are lots of us out here,..i will feel so content:)
Soo watch this space,...