Tuesday, 28 February 2012

My bro:)


At the moment I am currently undergoing an internship in the US for the purposes of my career. I have been away from my family 6 weeks; it’s the longest time it’s ever been with seeing my Mam, Dad and brother. Me and my parents are skping almost every day which is so helpful. But my brother lives in a residential house the net town over so I skpe him once a week!

Our conversations are normally pretty standard. My bro tells me about his week, shows me what new DVD he has purchased or is watching, asks me have I bought him any presents yet (i haven’t!) and gives me his weekly updated list of what pressies I should deliver when I return home for a holiday in the springJ
Then I normally lose my brother to the camera. My bro absolutely loves his reflection and the tiny skpe camera which allows you to see yourself is just too much for him to bear, so normally the rest of the conversation is my bro eyes himself, making fish faces et :)

So this message is an ode to my bro, who i love much and miss terribly. With all the upheavals and confusions of moving to another country it’s nice to have someone in your life who reminds you of the littler pleasures- the excitement of seeing your sibling after a week (even through a computer screen), the yummiest of chocolate and the never-ending fun of making fish faces in the mirror!

Monday, 13 February 2012

This one is for the parents!


Tony Humphreys psychologist has recently published an article whereby he draws a link between parents not giving their children enough affection and autism. Actually my blood is boiling just writing that sentence!
The theory of the “refrigerator Mother”, a psychoanalytic theory – was one of the first explanations for autism. This was the theory that these children were enclosed within their own world because their Mothers did not give them the love that they craved, therefore they became autistic. This was a theory that caused so much pain and upset to Mothers of children with autism who hadn’t enough to deal with considering their children had just been diagnosed with a lifelong disability that had no known cure.

This theory has long long long been disputed, because like much of psychoanalysis it is based solely on theory and not fact (excuse my dig at psychoanalysis but i am a trainee behaviour analyst lol). So this psychologist has decided to revisit this “theory” and it is no surprise that apparently he has a few books to sell (a little controversy always helps)

So since this psychologist has decided to base his report on theory i thought i would blog about some facts.
Fact number 1 – The theory of the Refrigerator Mother has been scientifically disregarded
Fact number 2 – Autism is a lifelong developmental disorder. Developmental in that it develops in the brain and can take a few years to fully develop.
Fact number 3 – Although the full cause has yet to be determined, autism is recognised to be caused by a mixture of genetic and environmental factors. The environmental factors have yet to be determined.  However you only need to observe the studies of twins to see the obvious genetic link.
Fact number 4 – Experts assert the recent rise of autism to be the widening of the definition of autistic spectrum disorders and not anything else (and i was just recently at a meeting with an international expert of autism who asserted to this fact)

So Tony Humphreys is getting his information from the fact that people who are engineers, computer scientists, scientist in  general are the most likely to have children diagnosed with an ASD. And this people just obviously don’t give as much love... so they have children with autism,..what tripe. Yes – this group of people have been recognised to be linked with children with autism. However, this has been linked to the genetic factor of autism. People diagnosed with an ASD are generally more likely to go into the engineering, scientific industry due to the fact that they evidently excel in these fields. Therefore, they- due to the genetic nature of autism are more like to have children on the spectrum- FACT.

And on a personal note, i am obviously a sibling of a brother with autism and my Mother is one of the most loving affectionate people on the planet. I work within the field of autism with families and it still continually amazes me how far the Mothers i see on a regular basis will go for their children- they will literally move the world for their child. So Tony Humphreys, I’m sure that you came into this field to help people so maybe you could do the decent thing and use you role to research relevant evidence about autism and concentrate on helping families instead of selling your books.

Monday, 6 February 2012

Sibs:)



I love this article about siblings and autism. I think it gives a great summary of the major stresses that a sibling of an individual with autism goes through. The obviously has been more a research focus on the impact of autism on parents, however thankfully in recent years are research targeting siblings are starting to emerge and become more and more common. It was even the subject of my own dissertation a few years ago.

I think a focus on siblings is so important after all we stand to be the longest relationship in our sibling’s life so it is an incredibly important relationship. Often siblings can take on a parental role from a very young age due to this. Myself, - me and my brother have a excellent relationship, but it has not always been perfect. This was especially during my teens when i felt quite self conscious about having a sibling who was different. Now i love my brother quirky personality and i really do not give a crap about people staring when we are out... says a lot more about them then usJ

Saturday, 28 January 2012

New autism research

http://www.bbc.co.uk/news/health-16740758

Some new research which may indicate children being identified as having an ASD from the age of six months! Early intervention is soo important so this is really fantastic news. Hopefully this research will display more positive results!

Friday, 20 January 2012

This is quite cool

http://storyful.com/stories/1000017532

I think this is great. A nine year old boy with an ASD raising awareness and grilling candidates about their special need proposals during the run up to the US elections. Some of the replies are incredibly patronising but once you can get past that its great!

And such a good idea,..what better way to give people with ASD a voice!

Tuesday, 27 December 2011

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!

Monday, 19 December 2011

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!)