Tuesday 29 November 2011

Simon Baran Cohen's new research- intelligent parents


People seem to have various views about Dr Simon Baran Cohen latest research indicating that really intelligent parents ie engineers, computer scientists, mathematicians are more likely to have children with an ASD. Some opinions include – yes Simon we kind of know this already and how much more are you spending researching this fairly obvious stuff!

I agree this banter has been around a while. Temple Grandin cites in her wonderful book “Thinking in Pictures” that’s its not unusual to her that the majority of hits she gets on her web page appear to be from Silicon Valley. However, i have to say i am a big fan of Mr Cohen – not only is he related to one of the most talented comedians (Sasha Baran Cohen) but i love his research and the concept of theory of mind was revolutionary and certainly changed my perspective of autism. Also his books are very reader friendly with huge emphasise on family support and a tone that is empathetic towards families not sympathetic. Any family member related to someone with an ASD or indeed anyone diagnosed with an ASD will tell you how important that is.

So although this is probably not the most mind blowing research, I can tell you as an (almost – i have not graduated yet) scientist. It is important to properly investigate and research these things. Vagueness has been sniffing around autism for decades – what we need now (obvious as they may seem) are facts!

Saturday 26 November 2011


Friendship can be a rocky one to ride. I think anyone who has been through the teenage years knows how difficult it can be, honestly especially when half the time when you are hugging your best friend good bye who are pulling the knife out of your back as you are walking away! Ok maybe I’m being a tad over dramatic, but friendship can be tricky..especially if you are a teenager and if you have a sibling with a disability it can be even more difficult. I remember having friends in school who would openly imitate that Timmy kid from South Park knowing full well i had a brother with autism. So friends is always an area of interest for me whenever i meet another sibling, especially if they are in their teenage years,soo how are your friends with it?

I have gotton several answers to this question, verging to  they love my sister, they feel sorry for me, they don’t like coming to my house or i don’t like bringing them home .It honestly makes me feel a little bit sad just typing this.

For me, how my friends treat my brother is basically make or break with my friendship. And i have always been quite lucky. I am absolutely so protective of my brother and probably take offence maybe a bit easily sometimes. But i openly admit...if anyone makes a joke at someone with autism in my admittedly very bias eyes they are tainted forever.

 One memorable instance happened at my house when i was 18. I was about to go out and two friends were over. Friend 1 knew and had known for a few years that i had a brother with autism, friend 2 didn’t know so told her that day,”hey my brother has this thing called autism so if he stares at you or acts a little different don’t worry”, as was my way if introducing people to what was so normal to me back then. Interestingly Friend 1 was so uncomfortable - her body posture actually tightened when my brother came up to introduce himself. It was as if my brother had a flashing autism sign above his head. That was all she could see. Friend 2 acted completely normal chatted away with him and told me how much she was looking forward to meeting him again the next day. I think you can guess the one I’m still friends withJ

Now that I’m in my twenties, i still tell people that i have a brother with autism before they come to my house. Although its different as I do find there is more awareness of autism now and obviously how i explain it is a little differentJ However, i am so lucky to have wonderful people in my life now who love my brother. I can’t explain how lovely it feels to see my friends excited when they see my brother and make such an effort to talk to him. My two bestest friends in the world (they know who they are) have an amazing relationship with my brother and i don’t think they know just how much it means to me. It is so nice when people who spend time with my brother see him for who he is and not some label or in some cases flashing signs they may see over their head.

This blog post probably is not the best for advice for other siblings as it is really my opinion on a very personal subject. But i suppose every person who meeting your brother or sister whether they react in a positive or a negative way at least they are being introduced to autism and the person behind the label whether they can see past it or not...it may just let them think differently about people. And if they still don’t get it,,..screw them! Do you really want ignorance in your life anyway?

Saturday 19 November 2011

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:)

Wednesday 2 November 2011

Me, me me!

I have had a few interesting conversations recently with people relating to siblings of people diagnosed with an ASD and the attention or misattention that siblings often get. Research indicates that due to the stress of having a child who maybe needs a little more attention , many other brothers and sisters often get pushed to the side.Obviously i am sure that this is something that happens in most families to some extent, there is always new research evolving on older child needs, the middle childs misplacement and the younger child's need for approval.

Two years ago while studying at Queens university in Belfast i chose to do my dissertation on siblings of children with autism. One piece of research did jump out and that is that there is a pattern of siblings feeling somewhat neglected at times and this occurs perhaps at a slightly higher frequency then most families. I often think its OK when they grow up they will understand.

Myself i think i was fairly lucky, with a very small family where its just me and my brother i was always given so much attention. Also, the type of person i am,i have always done my best to avoid any drama, always have been wanting to run off to my room the second a tantrum started , i would always rather be away from any of the drama associated with living with autism. So i think i kinda of trained myself to learn when i could not get my mams attention and while my brother was having a meltdown i was aware was not the best time!

 However i often wonder what it would be like now for me, the day of home programmes to have all these people coming into my house to play with my brother and not me, to shower praise on my brother and not me, to only see my brother and not me..i would say it would be fairly difficult. I remember one instance when a relative visited as a child who decided that my brother needed an all her attention, and me "the ok one "none. I remember my Mam told me years later how i acted up that weekend, storming out of the room, throwing toys down the stairs ,acting completely unlike myself! So i suppose parents who may be reading this and if you are experiencing this kind of behavior you may be reassured that this is normal, and maybe one day a week of just taking your child out may do this trick. To siblings who are reading this remember the overall message of the blog.. you are not alone!