Christmas is tough...

I have read so many blogs about autism in the last few years. The general consensus is that for families with an individual with ASD..  Christmas is quite a difficult time. There are so many reasons why autism and Christmas are a complete disaster

1.       It is something that only happens once a year, its completely out of the regular routine of everyday life.

2.       It involves the concept of a spiritual story which a lot of people with ASD have a difficult time getting their head around

3.       The excitement which revolves Christmas from the shops, the rush of people, overcrowded areas and just giving and receiving presents can be completely overwhelming for an individual who just struggles to cope with an everyday situation without getting stressed out

4.       And number four Christmas is complete sensory overload, blasting music, crowded streets and flashing lights..In even find it overwhelming.

Every year me and my family greet Christmas with a sense of anticipation and a little bit of dread. We have been quite lucky the last two years and have had quite calm Christmas’s with my brother. But then we have thrown ourselves into making it as calm and routine as possible. We have schedules and rules and calendar events posted all over the kitchen. Every Christmas we follow the exact same routine from the time we get up to the time that we go to bed at night. We don’t put up many decorations – a tree and a crib is the extent of it and we just keep our fingers crossed.

I have been asked so many times to come to friends on xmas day and i think people really don’t get how important it is for me to be home with my family to help my parents. Especially since i am an only sibling my parents really need my support. This year was quite calm and i was even able to go to a Christmas party (although late that night when i was sure all was well) so hurrahJ

So my message to every family who reads this blog and has a family member with ASD , i hope you have a wonderful, calm, safe Christmas with few meltdowns and outbursts and I hope you have a peaceful new year!

A Little Bit of Controversy for Christmas Week

http://www.youtube.com/watch?v=b0IvM8c-Pew&feature=related

So one of the whole points i started this blog was to have give honest opinion about being a sibling with autism. Obviously that involves giving my opinion on certain topics. I think one of the responsibilities of having a blog involves not being afraid to shy away from certain controversies and autism is unfortunately full of them. Also, I’m sure everyone who does read this is hopefully aware that this is just my personal opinion on topics and my own outlook I never wish to offend anyone and i completely respect every one else’s perspective. 

This video that I posted is hardly scientific but I do think that it is interesting and it involves one of the most controversy theories of what is the root of the recent surge of autism – the MMR. Despite the fact that officially the MMR has been cleared as safe and not linked to autism, it is still a topic that remerges again and again. Many parents still feel that the reaction that their child suffered due to getting this vaccine led to their child’s autism. I completely empathise with these parents. Maybe there needs to be more research to ease parents mind because unfortunately at the moment measles, mumps and rubella are at a dangerous level.

I think posting a video like this allows people to think about such an important topic that has such relevance for so many families.

Disclaimer: this link does contain a loooottt of offensive language and a lot of offensive Botox (Jenny McCarthy!)

Comedy?

http://www.rte.ie/ten/2011/1201/gervaisr.html

Ricky Gervais is getting in some trouble over his new TV show, as disability campaigners have accuses him of exploitation. This is not the first time that Ricky has come under the spot light of disability campaigners. However, my opinion on this...  I think that Gervais is a fantastic comedian and a very clever one. I think the way that Gervais handles disability in his shows is in quite a sensitive way. Throughout the Office, Extras and his new show I think Gervais jokes don’t make fun of those with a disability but the ignorant people around them. Like that classic scene in the Office where Garath points out to a girl he has just been introduced to “hey, you’re in a wheelchair” while everybody in the room puts their head in their hands. In my opinion Gervais uses the ignorance and miseducation of disability as the joke and not the person who is disabled.

However, i am completely aware that comedy and disability is such a sensitive thing. That’s why i love Gervais because the majority of comedians choose to make the person the disability that joke and I find that so upsetting and disrespectful.  I feel really stricken with the whole linking of comedy and disability sometimes, and yes i think that to promote inclusion that  we  do want people with disabilities to be included. Maybe they should be a part of the comic aspect just like every other member of society. However, my main issue is when it becomes disrespectful and mean. Comedians like Frankie Boyle and in some aspects Ben Stiller i think have clearly something missing inside them where it comes to empathy and understanding of other human beings.

Ben Stiller is an old enemy of mine. I have not watched Tropic Thunder, despite the fact that i have heard positive things about the films treatment of disability, making fun of ignorance rather than the disability again. However, after seeing “There is something about Mary” when i was 12 i just can’t bring myself to watch a single thing that Stiller is in, he has become so aversive to me he’s basically like a phobia at this stage! For anyone who hasn’t watched it, there is a horrible sterotype of an individual with a disability.

 The thing that does bother me about disability humour is that my brother can’t defend himself. Pretty much every other group can, they can issue a statement or take the piss back. Now i know there are a lot of people with disabilities that are well able to give as much as they get, but my brother is not one of them. The fact that nasty jokes are being made about people with autism, really cuts me to the core and the fact that my brother cannot defend himself is what makes me feel the worst. It is a vulnerable group.  When comedians argue the point of comedy is to push boundaries yaddayaddayadda guess what those theories are manmade! Mostly what i see are a bunch of insecure people, desperate to be shocking enough to make it into the papers and sell a few tour dates. If you don’t believe me, follow Tommy Tieran’s career- controversy- tour, controversy – tour and etc!

So again that’s just my opinion about a really sensitive matter. Again i don’t think disability humour should be not included. It allows people to become aware and hopefully discuss the disability. However, it does of course depend how it is done. Ricky Gervais you a winner in my book. Franky Boyle is worse than the worse biggest fattest playground bully picking on the smallest kid in the classroom.

Simon Baran Cohen's new research- intelligent parents

http://www.telegraph.co.uk/science/8905851/Rise-in-autism-may-be-linked-to-clever-parents.html

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!

Friends

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?

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:)

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!

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,...