Why Autism Sunday Matters!

Today is a big day in the land of autism for today is autism Sunday.

It’s sad but true, that for so many this means nothing. But then if Autism Sunday existed some ten years ago would it have meant anything to me?

“In a nutshell.. No” I would not have gave it a second thought to be honest, So to judge others would be hypocritical of me.

However things should have moved on a lot more given the rise in numbers of diagnosed cases of ASD today.

Little man was given a late diagnosis of Aspergers. Despite being taken on by camhs at age seven. During that very first visit we were told by the psychologist AS was likely to be a suitable diagnosis and referred onto the commications clinic he was actually nine when he received the formal diagnosis. That first psychologist who just knew it was AS moved to sunnier parts of the world and our loss was Australia’s gain. I beleive that if he never left things would have been formalised much sooner then they were. It was said that he displayed a mixed picture as school were insisting that they had not seen the behaviours I described saying that in their opinion any school problems were down to poor school attendence. I had a child who was on the spectrum and school phobic! But who the hell would listen? Two successful court apperances for the LEA shows that no one would. The same psychologist told us before he left that in his opinion it would only be a matter of time before little man is no longer able to surpress his anxieties when at school and as he gets older the taits of his suspected AS would unfold right before they’re eyes in an explosion of meltdowns, inappropriate languge and maybe even episods of violence that are beyond his control brought on by pure confusion, frustration and misunderstandings. By this time it would likely be to late for the mainstream relationship to continue.

As soon as he told me AS was suspected I cried so much that my eyes hurt, they honestly burnt… I then went home and started educating myself on everything autism spectrum. Suddenly everything begain to make sense for the first time in ages. For me it was becoming clear my child did in fact have AS or ASD. Later during my first court apperence for little mans constant school refusal I discovered the letter camhs had wrote to the school… It stated that they thought little man had ASD maybe Aspergers and that I was finding it very difficult to get little man to school, the likely effects his possible AS, insomina and anxieties. He went on to say I would need more support. He said he did not feel little man’s attendence concerns were due to a parental issue. It then went on to state how I was very shocked at the possible diagnosis and had become quite emotional. He had basically told them to give me a break! Yet stappled to that very same letter was a statement made by the then attendence and welfare officer (AWO) that read… “I can’t understand why mum would be so upset as it’s in the family” She was referring to little mans cousin on his fathers side, who was diagnosed with Autism aged 2. I was shocked to the core… How bloody insensitive was she! Come on if you have a family history of cancer, heart attack, diabetes which I do, would it therefore mean a person should not be shocked and emotional with a diagnosis of this kind? I’m not comparing any of the above to ASD I’m simply making a valid point of, “No matter what the bloody family history a diagnosis of any kind is bound to be an emotional one for any parent!” This woman showed ignorance on a whole new level.

Though my nephew now 8 was given a diagnosis of autism at two, I still knew little about the condition despite actually unknowingly raising a child on the spectrum. He was my first born and though I knew he was different I just didn’t know why.

I was treated like a lazy arse mother who couldn’t be bothered to get herself and child up and out of bed in the mornings. The threats of court action that were eventually carried through by the LEA and delivered by AWOs nearly broke me not once but twice! “This wasn’t what me or little man needed!” I would think to myself while sat though parenting classes that were directed at parents of unruly children (mainly teens) A few of the topics discussed included drugs, truancy, sexual relationships and teenage pregnancy! I stood up one evening and said, “what the hell am I doing here? My child is eight years old!” This was absurd, to my knowledge little man didn’t have a bloody clue about drugs! and I sure as hell hoped he wasn’t planing on making out with the ladies just. Still I sat through many useless classes as a result of that first court order.

Lucky for me the second court apperence was a nice big fine instead! Note, * Pure Sarcasm* Yet it could have been worse the LEA were taking me to court on the more serious charge of 4441(a) which basiclly means… Being a parent of a child of compusory school age who has failed to ensure their school attendence and the parent knowingly allows this by not taking him/her to school as opposed to 4441 of the education act that just means the above excluding the knowingly allows part! So how could it have gotten any worse? Well the penalty for 4441(a) is a prision sentence, level 3 fine or both. The judge dismissed the LEAs claim and although I was punished for having a child with AS who was a school refuser it was treated as 4441 meaning a lighter punishment of a £300 fine that I didn’t have so had to pay in installments. Of course this money would be better spent on my children, but hay injustice is never fair.

You really need all this what with being a parent of three children, two school aged (one with AS) and a newborn baby (yes second court apperance was served on me a few days before I gave birth to my youngest

Well the psychologist was right and those that read regularly will know that yes little mans AS did unfold before the schools and LEAs eyes and was dealt with by way of isolation, exclusions (I’ve lost count) In fact little man was being excluded as I stood in court like the naughty mummy I am! and now he receives education otherwise then at school while he awaits a place at a special school and the copy of his final statement of Special educational needs. There is also a pending disability discrimination hearing so a lot has happened since them court apperences most of it isn’t great as you can clearly see.

It’s no good being bitter, It eats away at your insides! However it’s hard not to be given you have stood in court twice, your childs school reported no issues and a year and ahalf later his had more exclusions then I’ve got shoes, you battle for a statement and work your arse of preparing your case for the tribunal due to your claim of discrimination, your child is now without a school and has zero self-esteem, you read reports from education professionals that show that they spend more time assessing you as a parent and questioning your mental health, that the child is left to fall through the cracks in the system, your tired.. so fucking tired that you burst into floods of tears because you spill the cereal at breakfast and you even forget your own bloody name when filling out forms!

Despite all the above I can now say I’m not bitter! I’m stronger! Though my battles are clearly not over and likely one will always arise. I’m putting my experiences to good use by helping others. I’ve done my training and now help other parents of children with autism with a right of appeal to the tribunal. I’m working with little man and his tutor to repair the damage of late diagnosis and mainstream school and today I will be saying a pray asking god for better understanding and support for those children and adults with Autism and Aspergers. Please Note this is not because I believe they are incabable of leading a perfectly good normal life, but because I believe the system does a pretty fine job at trying to make sure they can’t! Late diagnosis, long waiting list, battles to statement, lack of provision, jobs and support services are lacking and though I follow an array of campaigns trying to better all the above, progress is still lacking!

I think David Cameron needs to do a little more then say a few supportive words in aid of autism Sunday! However what did we expect when words are free! Let’s not bank on any support that costs money! The man is slowly stripping the country of it’s children services alongside the very few service supplied to adults on the spectrum.
I think in all honesty the man has some bare faced cheek.

Later today I will be posting an interview on the blog that I had with a very nice man called Coiln who wasn’t diagnosed with Aspergers till he was 44 years old. Did he get the support once diagnosed?

I think we all know the answer to that. What will it take to make things better? Anyone!

I wish you all a great Autism Sunday! Let’s aim to raise some real awareness today to all those untouched by ASD.
We are not asking for anything but a little less ignorance and tad more understanding as the odds are rising that someone you know now or sometime in the further, will have a autism spectrum condition with numbers of diagnosed cases rapidly increasing it seems like an idea to me.