Living With Autism - Our Story



Hi Everyone

My name is Kevin and for the last 17 years my wife and I have been dealing with the fact that our son - who for the purposes of this blog I'll call Sam - has an Autistic Spectrum Condition, specifically Asperger's Syndrome. His name really is Sam - Autism isn't a condition to be ashamed of or to hide away from your friends and family so he won't mind me using his real name.

The intention of this blog is to share our experiences with the growing number of parents, carers, siblings and people with any of the conditions covered by the autistic spectrum.

Sam was born exactly a month early when his mum was rushed into theatre with severe pre-eclampsia and underwent an emergency c-section. He weighed in at 4 and a half pounds and was the cutest and most adorable thing I'd ever seen.

Although he was in good health he had to remain in hospital until my wife's blood pressure was brought under control - a whole 11 days before we could bring him home.

Sam was our first - and subsequently only - child so we had no idea what to expect. We went through the whole gamut of emotions over the following weks and months from excitement when he did something new to complete panic everytime he coughed or the contents of his nappy didn't look entirely normal (I still don't know what is normal and I've changed hundreds of the smelly things)

The first indication we had that everything was not as it should be was when Sam was old enough to join in with activities at parent/child coffee mornings where he prefered to do his own thing rather than socialise with the other boys and girls although we just assumed he was a bit shy - like his dad.

He had a fixation with doors and loved to open and close then continually which caused real problems if it was in a public place and also really upset our next door neighbour when he kept opening and closing our living room door which made a loud bang each time.




Being a summer baby we threw a grand garden party for his second birthday and although we had plenty of children of a similar age there Sam prefered to sit in the garden swing while guests took turns pushing him to and fro to keep him from protesting. Again we just put it down to shyness around a house and garden full of people but deep down alarm bells were starting to sound.

Just before christmas we attended a family gathering ad the home of my younger brother and I asked my cousin who works as a school teacher to observe Sam's behaviour over a couple of hours and let me know what she thought. I didn't want to be the one to instigate a conversation with my wife about potential issues without having gathered some compelling evidence.

My cousin confirmed my suspicions that she thought that Sam had an autistic condition and this was likely to be a form of Aspergers.

Once we got home I took the plunge and raised my concern with my wife and although it was a difficult conversation we agreed to contact the health visitor and ask for professional advice. 



If you only have one child how do you know what is common behaviour and what isn't. This is the problem we faced when Sam was small and we naturally developed mechanisms for coping with various behaviours without any help from professionals or experienced parents of other kids with similar problems but this is not ideal and help from others has certainly been very usefull once we got the confirmed diagnosis and discoverd local (nd sometimes not so local) resources and support groups.



Sam had an unhealty obsession with remote controls of all shapes and sizes. We had to keep all of them hidden away as when he could see one but wasn't allowed to touch it it led to uncontrollable crying and screaming fits which were impossible to resolve without removing him from the vicinity of the item.

If we wanted to visit friends we had to ask them to hide all of their electronic gagets before we arrived. On one occassion some friends forgot to do this and within two minutes of our arrival Sam has stolen the TV remote and wouldn't give it back. I had to take it away from him and then we had to go home as he wouldn't stop screaming.



When we went shopping Sam refused to sit in the trolly and screamed continually if we carried him unless I sang to him the whole time at a volume that drew just as much attention as the initial screaming. I soon grew to ignore the irritated looks and the under the breath comments from fellow shoppers but my wife would get upset and want to leave the shop as quickly as possible.



Our visit to the health visitor early in the new year led to an immediate referal to the pediatrician which resulted in a swift diagnosis of 'Autistic Spectrum Disorder - Probably Aspergers' 

This generated a whole load of mixed emotions - for me the first thought was 'my son isn't perfect anymore' and 'why him?' followed by the relief that we know knew what the problem was and it wasn't a 'Serious' life-limiting problem.

At the end of the day Sam is our son and we love him exactly as he is but knowing what his condition is has allowed us to speak to many people who are in the same or similar situations and everyone has ways of coping that can be shared. We all think that we are of above average intelligence (something that is by definition completely impossible) and that we are the only ones who know our children best - so what could anyone else possibly know about our situation that can help.

The truth is that no matter how intelligent you are or how much experience you have dealing with people with spectrum conditions there is always something you can learn from other people in the same situation.

For example - I know a young guy whose 5 year old son was just going through the process of getting a diagnosis of Aspergers and during a conversation I shared one of the ways that we used to deal with Sam's behaviour when he couldn't get his own way or something in a situation was less than ideal. A simple case of distraction where we always had a plan B in case plan A went a bit Pete Tong. He and his wife have now been using this technique for a year and it has had fantastic results. It's not rocket science but not everyone can think of everything. Conversly we have learned a lot from Sam's original LSA at primary school about techniques that worked with him in class.



The more people you speak to the more you can learn and if you are just starting on the road to diagnosis then every bit of help ypu can get will make the journey less ardous for both yourselves, your child and all those around you.

My intention is to publish semi-regular blogs covering our autistic journey and hopefully some of the things that we've dealt with will help others in a similar siuation.

If you have a story to tell then please get in touch as I would love to feature your experiences coping with any aspect of ASC. 

You can contact me via the blog, on twitter @kevin_cannon or by email torchwood1968@gmail.com

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