Autism.

So today is world Autism awareness day. April is Autism awareness month, yet there still seem so many people who do not know about autism; perhaps even don’t care?
It never really occurred to me before I read @Fatal_Romantic blog that there are SO many siblings of kids with autism out there, each and everyone of us experiencing the same or similar things. Situations, emotions. Perhaps that is ignorant of me, for not considering it before now. I’m not insensitive towards the challenges having a family member with autism presents, I am guilty however of not giving ‘others out there’ much thought. Which is wrong, I am certain we’ve all been asked the aged old question - or perhaps it’s a statement? “Isn’t it extremely hard growing up in a house where someone is autistic” - My automatic response “I don’t know. I’ve never known anything else”

This is true, I was four when J was born, I had been spoiled rotten by my Parents and other family members. I had an air of jealousy surrounding my brothers birth, which was natural right? He was a happy bouncy baby, he slept well and ate well. Mum had to wake him up to feed him, which amused her friends no end.

I am not entirely sure when they first noticed something wasn’t quite right with him. From what I remember of him as a toddler he would sit on the living-room floor with his legs crossed on a blanket (he didn’t like the feel of the carpet), with his ‘world of bugs’ book carefully balanced on his lap. He would stare at the pictures and words for hours. Quietly taking it all in. Then on dull days, he would go out into the garden with our dog to ‘explore’ I can always remember the image of a small blonde haired boy standing at the bottom of the garden, infront of the drooping cherry tree and vibrant flowers; his black labrador sitting faithfully by his side. The two of them staying in the same position for what seemed like hours, watching the bees and other insects. There were times when even then I stopped to watch him, it never struck me as ‘odd’ I just envied his patience. Sometimes it would start to rain and he wouldn’t even notice.

When he wasn’t transfixed by the bees he was pulling up the rocks in the garden, collecting all the bugs he could find; carefully putting them into a box. Separating the ones that were ‘enemies’ as he said. He would present this box to our Mum, then continue to rattle off the different names of each bug.

J was always talking about his ‘obsession’ every single fact you didn’t need to know spilled from his innocent mouth.

As he grew up his ‘special interests’ changed, from bugs to space, then to play station. I remember in primary school, everyone asking me if he was my brother; because he would get scared or react to situations people could not fathom. They didn’t understand his unique traits and behaviour, they simply labelled him as a ‘bad little boy’ which wasn’t fair. I stuck up for him even then.

He was finally diagnosed at age 12, a rather lovely head teacher in his Primary School noticed he exhibited classic signs of Autism. I don’t know if Mum was relived? or just happy someone else finally saw what she’d been saying for years. It got to the point where she thought everyone thought she was ‘mad’ It was certainly a weight lifted. Although after his diagnosis things were tough. I imagine it is hard to be told there is ‘something’ wrong with your child, no matter if you already ‘knew’ hearing those words must have hurt, I think it broke her heart. No matter how long she’d yearned to ‘know’ the reality both my parents hard.

@Fatal_Romantic said something in her blog;

“There is that dramatic line, “I would die for you.” There are very few people I would say “I would kill for.” My brother is one of those very few people.”

I feel the exact same about my brothers.

One particular situation sticks in the forefront of my mind, I was 15 and had recently joined fire cadets at my local fire station. I loved it, every minute of it. I quickly became enthralled in everything and I rose to ‘leading fire cadet’ - this was something that made my Parents proud. I met the Queen & was introduced as “The first female leading fire cadet in the UK”
J was nearing his 12th birthday, a week away. This was the youngest a person could be for joining cadets. I had made friends with one of the instructors daughters, this instructor was a primary school teacher and also had several degrees in Psychology. They came from a extremely affluent area of the city, I had mentioned to this instructor before I had a brother who had Asperger’s Syndrome. She spoke to me for ages, asking questions and telling me things I already knew. Then she said to me;

“You know it’s very rare for Parents who have an autistic child to stay together” - me 15 years old, I can honestly say a little bit of me died then.
So J applied to fire cadets, he was all excited, I would come home and tell him everything that happened. I figured the more I told him about what the routine was like the easier it would be for him to ‘adapt’. For around two weeks it’s all he would talk about. He even pestered me to bring my folder home, in which contained everything a ‘fire cadet’ needed to know. From how to tie knots to the command structure within the fire brigade.
He studied the whole folder, by the time he read it once he had memorised every single word. Mum got a phone call a few days later saying he hadn’t been accepted this time. He was gutted, devastated. I was angry.

I phoned my friend, the daughter of said instructor - both her Parents were the ‘main’ people of the cadets. My friend A fired up her Mum’s computer and accessed the fire cadet files, she opened the applications folder and skimmed through the names of people applying until she reached my brothers. It still makes my blood boil even now

“Applications rejected on the grounds of health and safety . Applicant is Autistic so therefore poses a danger to other cadets”

This written by the woman who said she ‘knew everything about autism’ she was a disgrace to her profession and a truly nasty person.
There were SO many kids that attended cadets that had severe behavioural issues. J paled in comparison.

Just another example of people who should know better, but still fall back into the stereotypical view of someone who has Autism.

This is just a tiny miniscule part of the challenges my family has faced over the last 20 or so years. There are a lot more, there are SO many ignorant and quite frankly rude people in this word. Some of which like above should know better. Mum tells the boys when the encounter such people

“They can't understand, feel sorry for them as they are new souls, they will learn their lesson in some way’

It helps them to understand it a little. Only recently has J who is 21 openly told people/his friends he is Autistic, he’s scared of the reaction he’ll get. Scared that they’ll stop talking to him, or think differently of him. I am pleased to say his fears were unjustified. The majority of the responses from his friends have been “wow I didn’t even realise” - I don’t know if that is due to the amazing friends he has surrounded himself with or the inquisitiveness of his generation. But I am thankful to each and everyone of them, they are true friends. They know if he’s finding a situation hard and is likely to freak out just how to calm him down.

Autism awareness is very important to me, I can’t help but think the number of people ‘out there’ who have never heard of this condition. How many Parents are teetering on the edge of a precipice, knowing something is wrong, but nobody is listening or seeing what they do. Children with Autism should be given the support they need, they should be nurtured and most importantly understood.