Saturday, 13 October 2012

Shining a light on Atypical Autism & Aspergers

 On the 28th of September 1995 my second son was born in Winterpark Birthing center - did I know when he was born that he would be different - of course not but as we celebrate his 17th birthday and the changes he has gone through I wanted to blog about his journey and let others know how an original diagnosis of Autism changed my views on flapping and self esteem- sometimes you just have to see the world though their eyes . Hope you enjoy the view ..
 First off I should explain my son was a selective mute , he could make noise mainly a wooshing sound and the first thing I wanted to know was why if he had a voice did he not feel the need to use it . You can see from this photo he has a wonderful sense of fun and I have encouraged him to express himself non verbally and we have had a lot of fun exploring ways to bring him out of his shell.
 I guess we are lucky in that we have accepted the fact that he has no fear he will literally throw himself at anything this is more to do with his personality than his Asperges but many on the spectrum have no concept of fear and danger.
 Some experts suggested a genetic factor , which of course has certainly duplicated a strong similarity to his father and I recognise a lot of my OCD traits in my son and can also empathise with his difficulty in intepreting the outside world of facial expressions and social rules . But neither his father nor I knew anything about ASD until he turned 7 years old.  We knew he was developmentally delayed and we already had a son who had a diagnosis of ADHD so when our daughter was born a neurotypical we suddenly realised just how different our boys had become.
My little girl interacted with us , my boys interacted with themselves. journey into parenting turned on it's head as I sat with several mums finding out what to expect in my sons future . I was determined to take action to make sure he would not only be accepted in society but to arm him with the tools he would need to fit in . If that meant pretending to be normal then I would make him the best actor and applaud every performance to the last curtain!
 My son was asked how was he feeling about being in a new school and he lead his teacher by the hand and placed his head in the school photocopier by this stage he had undergone 4 years of intensive speech therapy and had integrated into a mainstream school. He could talk - well monologue to be honest . But he still could only show his feelings in a on verbal form.
When he was asked to give a desciption of who he had seen messing up the boys cloakroom his answe had us in fits of giggles as he said well it was a boy , wearing the same school uniform as this (pointing to his own) I did not know him so I did not ask him his name as you know you should not talk to strangers - well that narrowed it down - NOT!
 When he was very young the two boys were full of laughter , trips out would usually involve keeping a very close eye on them as they would just suddenly run out of steam and settle on the floor without telling us . They were attracted to colour and texture and so we knew we would generally find them tucked in between clothing racks on in this case squatting in a market stall .
 Naturally his preferred socialising was parallel play on computer games and to this day it still is his favourite method of interaction. When we did invite friends over to interact he was more interested in their shoes as his first way of recognising people and deciding if he liked them was based on shoe recognition. he once told me he knew his teacher would be kind as she always wore the same shoes everyday so he could recognise her no matter what else she was wearing.
 In order to engage in a conversation I had to learn to liteally hold him still and remind him several times that he was meant to look at me so that we could engage in conversation - this took years for him to master and when he meets new people he still finds it difficult to engage eye contact .
 The world was and still is exhausting for him even though he now has a new diagnosis of Atypical Aspergers due to his impressive progress he still has to remove himself now and then to restore and recharge - clearly he is now much to big for his sisters pushchair but it served it's purpose and it never bothered him to lift one of his siblings out so he could take a nap right up until he was 10 !
 Of course being adventurous by nature he has his fair share of accidents , the hardest thing for the doctors is figuring out just how badly injured he is and which side to xray. In 2000 they had to xray both his legs as he is known as 'cross wired' , it turned out to be the leg he was sat upon that had a multiple spiral fracture with the doctors said was incedible as he should have been in agony.
 In 2009 he was thrown several feet as a van hit him and again he came out not knowing where he was damaged miraculously apart from a lot of debris from the road not a single bone was broken . In fact I was pretty pleased as he has Oshgood Shlatter syndrome and the accident could have left him in a chair - a lucky escape , they suggested he must have been incredibly relaxed and floppy like a baby as the van hit him as this was the only logical explanation for such little damage.
 One of the cutest things we experienced and he has learned to disguise was his flapping - often seen at meal times and when running or just generally excited . His arms would be extended and sometimes we were sure he would just take off !
 At first we assumed he would grow out of it , but we soon found out this is quite common along with his spinning and rocking. We had to find ways of helping him cope with this as he found it frustrating and seemed unable to control it .
 At school he was always known for being quiet and polite and most of all being a big smiler. He smiled all the time. He would be in pain and smile, he would be confused and smile and you would ask him are you okay and his reply would simply be 'okay' . This echolalia as it is known is also very common . The unwillingness to show a change of expression also confused the teachers and his friends as sometimes he seemed to be grinning at them in a mocking manner!
 He was and still is quite happy to come and reverse himself into you and can come over on his terms for a cuddle , these days its a big bear hug when he feels like it .
 Overtime peer pressure and a few comments from his friends he learned to take the flap behind him and this lead to a familiar stance of hands behind his back firmly clasped which he pulls off pretty naturally these days . These days he fits in at college , he has made some solid friendships and they all know he has difficulty with some of the more social activities , he holds is own, he is a popular lad and I am very proud that the little boy who once was so silent is now as noisy as any other teenager .



72 comments:

  1. What a lovely story, you sound like you have a lovely family and a wonderful son who is a credit to you :-)
    Tara McDermott xx

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    1. Thank you Tara for leaving a comment for me , I have just been sitting reviewing my blog and thought I would reply to say it is much appreciated . Quite often my ramblings are internal dialogues which I put to paper and reflect upon and if they make me smile I type them up on here in the hopes to bring a smile to someone else too x

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  2. Thank you , I had a lot of support from the national autistic society and have supported them in return - I hope it helps anyone wondering if things will change xx They can and do ..x

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    1. I think in the last 10 years we have already seen a massive movement in not only recognising but acknowledging the broader range of both children and adults on the spectrum. The NAS continue this month to highlight awareness and many of us will be heading up to the Autism Show this year at the Excel for it's third year to gather more information and more resources. It is an ongoing story but one I have great pleasure in sharing with whomever stops by my blogs x Thanks for your comment x

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