The comment from a child with autism

Have you ever logged onto your blog to be presented with a comment that brings tears to your eyes within a second of reading it? I have!

Writing the blog, ‘A boy with Aspergers’ has not only helped me express myself, giving me a platform to put down my thoughts, share our trails and tribulations, celebrate our achievements as a family, a place to off load both the good and not so good, but it’s so helped me to connect with other families like my own. I have always hoped that other families draw comfort from my words, somehow relate and feel they are not alone! There are many parents of children on the autism spectrum, that have commented one my blog and when they state how the blog or facebook page has helped them somehow, I feel inspired to write more.

But what if its not a parent, teacher, carer or other that comments on your blog, what if its a child, one who is on the autism spectrum, a young teenage girl who within a few simple words manages to share her likes & dislikes, express her lack of happiness with the world she lives in, as well as the things she longs for most as a teenager? She didn’t want the latest mobile phone or a tenner to go see a movie with a friend, no! She wanted something that most of us take for granted, either that or something we don’t fully appreciate. Below you can read the words that I read when opening my blog today, the words of one teenage girl on the autism spectrum…

I am a girl who got Autism. Who can’t really make new friends too hard me make really upset. I am a girl who really like to handwriting a lot, liking to make the teacher laugh! I am a girl who like to dance, listen to music, go on a computer or on a laptop. I am a girl who sometimes repeat her self. I am a girl who gets wind up all the time. I am a girl who gets into trouble a lot. I am a girl who get pick on a lot. I am a girl who need to make a new friends who i really trust. I am a girl who is feeling really alone. I am a girl who always staying in at play times sometimes. I am a girl who really need to gets help. I am a girl who really talk anyone. I am a girl who feels like getting push out of stuff. I am a girl who always put same things! I am a girl who really need a new friends who can keep secrets and who I really trust of a best friend. I am a girl who feels really alone. Note these words have not been edited in any shape or form & the original comment can be found over on the page “Autism love list” located under the header above.

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Are you really brave enough to put the word Aspergers down on your job application?

The power of the internet is truly amazing, for me it’s brought information, peace, opportunities, comfort, experiences, support, education, understanding and friends. (Those and so many more!) 

 Yesterday, I got to meet one those friends in the flesh, over a fabulously delicious skinny latte, with lashings of cinnamon generously sprinkled over a layer of froth. (No, that wasn’t a snip-it from the Marks & Sparks commercial, but me really appreciating a good mug of coffee!) Thanks Neil 🙂

 Star bucks was the ideal setting to chat to a new friend, one I had been wanting to meet for sometime but life being life just made it an impossible task… Well till now! 

 I suppose to classify Neil as a “New friend” isn’t quite right! You see, I’ve known Neil for sometime now, though conversations are only ever exchanged in the land of cyber-space. Neil, an adult on the autism spectrum who was given a late diagnosis of Aspergers syndrome, is a regular contributor in discussions and a massive supporter of the support page, ‘A boy with Asperger’s’ the Facebook page in which I created some few years back as an added addition to this very blog (hence the name of course). His opinions are always given in a frank and honest manner, his certainly given some great advice to many of our members, including that of myself. To be honest Neil has provided me with a sort of insight, highlighting how things could possibly be for my own child in adult life (an important issue to which I will elaborate on soon enough)! 

 Here I was, finally about to meet Neil who yes as mentioned has Aspergers. Just, after 1.30 lunch time I arrived to found Neil awaiting my arrival at the entrance. I knew it was Neil and his profile pic on Facebook had sod all to do with it! So… What gave him away? Only the fact he checked out my footwear as I entered through the door ensuring I had no sandals upon my feet (Yes, Neil hates sandals) There was no awkwardness having only previously met in cyberspace, well… this was the case for me and Neil seemed just fine too! Having got passed the shock that was caused by the similarities of my common London girl accent to that of someone you would likely find staring in the soap ‘Eastenders’ We chatted about life in general. Honestly, Neil is a genuine guy who is extremely interesting and speaks from his heart. He says exactly how it is (Which is an aspie trait you cannot fail to appreciate). 

 Everything Neil said was of interest, I found it a privilege to have him tell me about his life on the spectrum. He put the myths to bed and although I myself  always knew it possible, it was just so good to hear that the best part of his life has been a great success! How else can you describe a good education, (through it wasn’t always easy) a happy marriage and a beautiful son. However, there was something that had never been quite right! At no fault of his own Neil has never been able to hold down a job! Why because society wont allow him that right, the basic human right to make an honest living, to be the loving husband and father who provides and I should add ‘Wants’ to provide for his family… WHY? Its simple! Neil is not seen as a) a “Team-Player, b)  a big communicator  and c) one of them (you know part of the click) Yes, that’s right, those that will a least give him a chance assume his some kind of character from the film ‘Rain man’ sitting him in the corner alone, far away from his colleagues, drawing the conclusion that it’s for the best as this is what those with aspergers want and need to be social isolated from the ‘world… Well, isn’t It! 

This alone screams out loud how little those in the work place, especially that of senior staff really know about AS!

 Neil isn’t under-qualified in-fact he proves that yes, people with AS have great minds and given they put everything into it just as one would who isn’t on the spectrum, they can go on to obtain good qualifications, even having excelled in many areas of  their learning. Is it right that many people on the autism specturm or those with learning disabilities, mental health problems, especially those who’s condition is characterised but that of a difficulty with social communication, are taught by society at large that it is at there utter best interest to go to collage and then university, for god knows how many years, to obtain a degree only to face to total disappointment on the discovery that they are completely unemployable? Even when they do get their foot in the door ready for the challenge of the world of work, a large number of employees with a disability are treated just like my friend Neil (Though you haven’t yet heard the half of it)! Note: I’m not stating those with autism or any other form of disability shouldn’t go to university, obtain a degree! Maybe one day that of my own son will, through that’s his choice and his alone! Nor am I stating that all employers treat employees who have autism/aspergers or other, in this same manner… That would mean I was writing this in a discriminating way! I acknowledge that there are many that do not discriminate and actually do take the time to get autism aware and inflict that awareness on all of its employers! But sadly the number that do not are still far to high, just ask Neil or better still,  just go back a few months when MP Philip Davis outrageously called for all disabled to work for less then the minimum wage… Something he must have unquestionably considered fair in his discriminating little brain! 

 Neil’s last job ( in IT) saw him and around approximately fifteen other employees, employed on a fixed term contract! Neil once again was sat in a corner, left to his own devices. Where was the structure? Of course there wasn’t any. As a woman who isn’t on the spectrum, though I often like to be left to my own devices, I like to know exactly what it is I’m supposed to be doing, how, when and how long for in order for me to do it and do it well, who don’t? For someone like Neil this is imperative! This didn’t happen, like many people with a social communication difficulty he didn’t feel to ask, he didn’t want to, this wasn’t the comfortable thing to do. Failing to see that In-fact Neil was human and would kind of appreciate come social interaction… No one took notice! The results… Neil’s work wasn’t at its finest (but still good I must add). 

 The very end result…

You guessed it, (If, u didn’t after such a long rant then you’re clearly not following.)  Neil’s contract came to an end as planned and just as it did for those fifteen others! Well, fair game then, a contract ending is just that, a contract ending! Where is the problem? Here’s the problem… The other fifteen, all except Neil that is, found themselves happily celebrating the fact they immediately had their contracts renewed for a much longer period of time by their once more praising boss. What a sack of crap!!! Seriously can you imagine how that must have felt? Maybe It felt something like how my own son felt when he was taught in isolation, away from others, left to his own devices, maybe it kinda resembled that same feeling like when my son was told he wouldn’t be allowed to attend educational trips or participate in activities alongside that of his peers! My point… From class room, to office, child to adult discrimination due to others inability to except the person you are, that of disability discriminate still delivers that same devastating blow! Was it Ok, after all the contract had come to a timely end? Crap! This was wrong and Neil for one knows it. Lets not forget its not his first job and likely wont be that of his last! He was told, Sorry you are not much of a team player and yes your work wasn’t always up to scratch. The fact is, having they had made the work place that bit more accessible, made adaptions allowing for his Aspergers from the word go, with the added courtesy of  some instructions, which would have been much appreciated, Neil would have produced the work expected and would likely have been a great deal happier in his working environment!

 My very last point… Promise!

 Not only did I learn from Neil that my son could possible get married, have children, ride a motorbike and hate sandals as much as him! I also learnt he could possible found himself unemployable and yet again the target of discrimination. Yes, my child may have got in to our desired school but like Neil showed me… To get into his desired job is something his yet to face! 

 Neil is looking to make a stand! His words to me, “I want to change things so children like your son don’t have to grow up and be treated in the same way!” My opinion… That was spoken with passion! Please help. I don’t often plea for your help (Ok, Ok excluding that of the Mad blog awards) but this is so very important and its life changing for him and so many others. Neil is searching for other adults both young and old who have autism or other related conditions to get in touch. He wants to collect your stories and get them heard… I guarantee that this will be a campaign he will fight to the bitter end but to do it alone just makes it harder! Neil is looking for people who feel they were discriminated against at work due to their disability, who wants change and wants it with a passion. 

Contact me here by leaving a comment here on the blog

To visit Neil’s Blog: Click HERE

Contact me on twitter: @Clairelouise82

 

Related articles

• A College Structure for Students with Asperger Syndrome (education.com)
• Special Edition – Aspergers (education.com)

A fresh start

It’s 3-Am the early hours of Thursday morning, Little man is running around the house like some headless loud chicken on pro-plus and redbull. 

“Come on, you really have to settle down now! You know you start your new school tomorrow, don’t you think you should get some rest”? This was me, trying to unsuccessfully reason with my ten-year old little man! He seems more lively than ever despite the 8 mg of Melatonin he had an hour before! 

It’s the night before the big event! This is quite possibly the biggest event in little man’s life to date, for the morning will bring with it a new beginning, a chance to start a fresh! Don’t all children deserve this? 

Over the course of a few months I watched my child lose every last stripe of his self-esteem. I watched him being gradually excluded from everything he had learnt to love, socially isolated from the friends it had taken far to long for him to make! I battled a system that took every last inch of my strength to break, the endless meetings, the tears from both myself and my child. I listened to the professionals each one slowly giving up on him, the constant calls to collect him as he was said to have been a danger to himself and others, maybe he didn’t fit in with the daily activities planed for the day. I went to court where I found myself prosecuted for my child’s school refusal, not once but twice. I watched him cry, hit his head and ask god why? When my child stated, “I just want to be normal” I cried and continued to cry for nights, days, weeks even months after. I was scared for my sons future, for what lay ahead. I felt lost, wanting to remove my child from the school I felt was truly damaging him, the school that taught him in isolation like some mass murder. I battled for a statement, I got one, then battled for the appropriate amendments to be made! I got brave filing a claim for discrimination and getting the result we wanted although knowing this already tough relationship would now get tougher. Finally I removed my child from the educational setting that was so, so wrong for him, and watched the slow improvements as he was taught 1-1 for five hours a day at the local library by a great tutor supplied by the LEA. I found a school, an independent special school, solely for children with autism! Yet the Lea were not about to hand it to me on a plate and only after every single state maintained special school failed to offer him a place did they finally give in, agreeing to his placement at my preferred school. Little Man had spent the last six months out off school, prior to this, for the period of a year or more Little man was either home on exclusion, educated at school for the period of just three hours per day given in an isolated environment, spending the afternoons at home where he was home schooled. Now he would take the steps needed to make a slow transition to his new learning environment with the help of his tutor, his now best friend! 

This was a big deal for him, I understood that! It’s a big deal for me too! His excitement was electrifying, yet his anxiety was closely hovering by! Little man is wide-eyed at 3-Am almost every night, So this night wasn’t any different! However his this degree of hyperactivity was at a high and risky level, one I hadn’t seen in a while.  

It was something past 4-Am before little man finally gave in, surrendering to his bodies cry for sleep. I tried hard to stay awake, the fear I would somehow sleep through the alarm having fallen asleep so late was within me! Though I gave it all I had but was defeated, just as Little man was an hour before. 

What seemed like five minutes later (God I hate that) I was rudely but thankfully awoken by the horrid buzz of the alarm clock. Rubbing my eyes and seriously struggling to see a thing I faintly made out the numbers on the alarm establishing that it was 7-Am. I could have so easily closed my eyes, reasoning with myself that five minutes extra would do no harm, that I somehow would be able to remain in touch with my head that would remind me that I needed to get outta bed. But I didn’t… Though I have in the past, I made myself get out of that bed and get on with it. 

Waking the little man was like waking an angry dinosaur that or an over hormonal teenager (at ten, this isn’t great… meaning I would preferably go with the dinosaur right now) He angrily gave me an unwelcome gesture of his middle finger then so kindly asked me to @%** Off! I persisted in-till I had movement. Up he got with an awful load of abuse in toll . This little guy had only been a sleep a total of three hours and of course he was filled with both the fear and excitement about the new school . I tried not to escalate the situation and let him dress at his own slow pace. Eventually I was greeted with a somewhat more pleasant child, who sat next to me and said, “Mum, I’m terrified”  Holding on to his hand, I told him it was gonna be Ok! But if the truth be told… I was terrified too!

I would not be joining him for his first morning, It was decided that he should instead start the transition process with the help and support of his tutor. He would only go till 12 p.m. slowly working his way up to full-time. His tutor would go with him for the first two days to settle him before his contract to teach Little man would reach an end. (This was going to be hard) The taxi came and the escort came to the door. Little man walked out to greet her, I shouted that I loved him, to relax, enjoy it, to have some fun. His reply, “I love you too mum” His eyes were so tired and filled with fear, yet I knew he was also excited. I was incredibly proud at that moment… I could have exploded with pride, for after all his been through he was now taking this giant step into the unknown. The morning dragged I sat by the phone on tender hooks, ten, then eleven o’clock no call. I just wasn’t used to this! 12.30 I heard the knock, I ran down the stairs like sonic the hedgehog and flange open the door. There he was, my little man and his tutor. 

Indoors, feed and settled, (this has to be done before probing begins) I asked… “Well, what was it like?” To which he replied. “It was the best mum. I even made a friend! Oh guess what? He has aspergers just like me”  It was then I realised that the tears & the battles had finally amounted to something. I’m not stating they were all worth it, just that for once they lead to something positive. This time I cried the tears of happiness! 

 It’s early days yet, but for once I’m opting out of my usual pessimist attitude and holding on to the hope that this is really it…

A fresh start!

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.

Social isolation

It seems that every post lately is full of doom and gloom!

I hope that 2011 brings with it lots of smiles, because lately we just aint seeing any!

I have decided that I may have to visit the GP and ask about getting little man signed off school for a while. It seems that for the last few months I have had to repetitively deliver disappointing news to little man! It’s always the same… “Sorry darling but you can’t take part in your school play” or “I’m really sorry, i tried but they won’t let you join the class for the christmas party!” I think you get the point!

I just can’t do this anymore! It’s heartbreaking informing your ten year old that he wont be joining his class again because his school state they can’t take that chance! It’s got to the point that he is punished for behaviours that haven’t occurred… But they assume that they might and to them that’s good enough. How do you explain this to a child on the spectrum? In all fairness, How do you explain this to ANY child?  You can’t!

It’s bad enough Little Man has missed so much time at school due to exclusions. His missed activities because his considered a liability, and now he misses Christmas (Well Christmas at school that is!)

It crushes him everytime…. And I never know how to answer the whys. If he isn’t sat crying himself to sleep, his angry, so angry that his throwing his whole body against brick walls. Things were so bad last month that he whacked his arm against the wall so many times it bleed. This wasn’t due to discovering he wasn’t attending a trip or taking part in a school activity, this was for a reason unknown, that I expect was a build up of emotions and anger due to the time he spends isolated in school.

Little man has spent something silly like six afternoons in his classroom since the beginning of October on returning from an exclusion! He is Isolated (spends time alone learning with TA) in the mornings and home in the afternoons (School wanted him isolated the whole day)

When I broke the news about the school party yesterday, he cried so much his eyes were sore. He didn’t kick, punch, destroy anything like he often has! I think he was to worn out to do so…. After all it’s happening all the time. I just sat thinking I honestly can’t do this anymore. His mental well-being & self esteem is deteriorating and I can’t sit back and willing watch it happen.

I’ve tried so hard to make him feel better by creating our own elf day, school trips and parties trying to compensate for the ones his missing. At first it did the trick but over time it just isn’t enough! He says it’s not the same! And I know it isn’t!

It’s sad seeing the disappointment plastered all over his face. He may have Aspergers but this don’t make him stupid and unable to see what is going on around him. I took him in to school on Monday morning and by the time I collected him at mid-day he was a mess! He had heard the other children outside singing christmas carols but was unable to join in. It was Elf Day and the children do christmas activities and crafts. His TA made a Santa decoration with him… But it wasn’t enough, it wasn’t the same, and no way was this inclusion. All the way home he keep asking why he couldn’t join his class!

I had a meeting that same afternoon. It was at this meeting the Head teacher and Senco told me they didn’t want little man returning to his class & that he wouldn’t be allowed to join them for the class Christmas party. Instead we were told they maybe able to organise for some of his peers to come out of class and spend time with him in the Den. My mother who was at the meeting was gob smacked! She made a valid point off…. This will only make him feel more “different” then he already does!

I have been informed by the Sen Caseworker that Little mans purposed statement is in the process of being drafted and should be with me sometime this week. I just hope that something has gone right and it’s been done to a high standard “No corners cut”  The school talked about little man returning to school in Jan 2011 given his not yet got a school placement in a “special school” There would be a change In TA and even more isolation. I just refuse to do it anymore. To be frank, If the doctor doesn’t sign him off… Looks like I will be taken to court for non school attendance. I’ve been there before and to be honest this time I will have a lot more to say!!!!

So that’s my decision and I’m sticking with it! Let’s just hope Little man gets the right school and the chance for happiness in 2011.. Resulting in post that are full of happiness for a change!