Never fulfilling the criteria

Some of you may have read my post “Help me to reveal the bigger picture this world autism day” which I posted no longer than a few days back. I wrote the post in an attempt to gather others by my side, in-order to help me pull of a great idea for this World Autism Awareness day (April 2nd 2012)

For those that didn’t read the post, please do, you can find it HERE.

A very quick summary… Basically I’m trying to encourage people to wear something that contains the colours of the awareness puzzle or ribbon. Maybe one of the two symbols on a tee-shirt, face paints, a home-made funky eye mask, etc… it’s totally up to you just be creative! Next write the words”Doing it for World Autism 2012″on a large piece of card and hold it up. Lastly, regardless of where in the world you are, snap a picture.

This is aimed at all, especially those who don’t have a child, partner, relative on the autism spectrum, as well as those that do! Bloggers, especially mummy & daddy bloggers, health bloggers, autism activist etc, can then upload pic onto their site/blog with small description stating that they are doing it to raise awareness for autism. I’ll add a link to my blog and everyone can submit links to linky.

Would love you to also tweet pics and messages using hash tag #worldautism2012 on Twitter

Those that love to network on Facebook, can upload to there profiles or pages tagging the page A boy with Aspergers, which is the fan page connected to my blog and has become a support haven for almost 5,000 members, who are looked after by myself and a great group of admins who have stuck with it throughout.

I’m hoping to get enough images of people around the world dressed proudly in their autism bright’s with a board in their hands. Why… Because I’ll make this into an awesome awareness collage!

For the full details please check the link, as given above!

Now, that’s done, I wanted to touch on yet another issue That I raised within that very same post a few days back!

Those who read, will know that I gave some examples to demonstrate how the word mild, when used with High functioning autism and Aspergers Syndrome, can all to often be seen in the wrong light, resulting in likely misconceptions, causing many distressing situations for those on the higher end of the autism spectrum. This is mainly due to the term mild being widely used to describe the intellectual side of asperger’s and HF autism which then leads people to dismiss every trait to be that of mild! I tried to demonstrate how this is rarely the case when it comes to the social aspect of HF autism and Aspergers.

Now, I did go off to bed late last night, questioning whether I made my point clear enough, explained it as well as I could have! Some fans on Facebook stated I hit the nail on the head where others couldn’t get passed the need to compare Aspergers to what some describe as classic autistic (lower functioning) I did point out that those with autism often get stuck in their own world where’s those with Aspergers often (well, at some point) realise they are different! they want to socialise and just cannot do so, this can cause great depression within the child.

Now to cut to the chase and reframe from writing that whole essay of a post all over again,I’m here today because I came across a news story that highlights the importance of the issues I raised last time… When I asked you.. “would u use the world “mild” to describe…”

Now I ask you the same with another example, one that was reported within the news. I ask does the article you are about to read represent the word “Mild”?

A 11-year-old boy diagnosed as having Aspergers Syndrome was reported to have run away from home because he was struggling to cope with his autism!

The report told how a massive police search was put in place when the child known as Ben, went missing from his bed sometime during the night. He was found to be missing at 7am in the morning when his parents went to wake him for school!

Ben had left a handwritten note which stated that he did not wish to be found!

His father reports how his son Ben who is diagnosed as having Aspergers syndrome, suffers from anxiety and was particularly anxious due to the Sports day taking place at the school which he attends.

Ben’s parents state that “Ben running away is part of an inability to cope with certain social
situations and pressures, which is part of his condition.”

However it was noted that Ben had never ran away before, making this extremely worrying for his parents and everybody else involved.

A huge search was underway when Ben was thankfully spotted by officers who were searching above by helicopter in Elloughton Dales just after 10am.

It is said that Ben told his parents that he had planned to return home later that day.

Ben himself, is a child who has tried to raise awareness for his condition! It has been reported that Ben previously worked raising awareness for autism as part of the Lifestyle Project, organised by Humberside Police.

As I continued on Reading the article, I sadly discovered something that although unfair and anger provoking, it came as no surprise to me whatsoever!

Ben’s father told reporters, that his son is currently under the care of a paediatric consultant, but has only now, since the incident, been offered more help!!

An all to often situation, parents asking for help before the child in question gets into a worrying or dangerous situation, only any previous request are outrightly declined, with the explanation always the same… Your child nor family fit our “criteria” therefore you’re not eligible for support!

Yes, it was reported that Ben’s parents expressed concerns for their child many times, they were noted to be constantly asking for support for Ben, they fought for Ben, though in the end, it took a situation that could have ended so much worse, for that criteria to finally be
met! severe

After Ben’s return his family contacted their local Child and Adolescent Mental Health Service, known to most as (CAMHS) to demand support for Ben, which was thankfully agreed.

The parents wanted to thank the public, family and friends for support. There was also words of thanks for the guys in blue for their fast and efficient response that lead to Ben’s safe return home.

It was reported within the article that CAMHS had made the following statement.

“A spokeswoman for Humber NHS Foundation Trust said: “All referrals to our CAMHS team come either through a professional, such as a school nurse, who has concerns about a young person’s mental or emotional health and would contact one of our primary mental health workers, or through the family’s GP”

Finishing by saying

“All referrals are considered by the multi-disciplinary team to decide on the appropriate care route for the young person.”

This is just one more example of why we need to be heard, Ben like many others, my own child included, deserve a happy childhood, after all this is what every child should have!

Those older Adults on the spectrum, also deserve good decent services, support, recognition and acceptance.

Please wear your colour and hold up your board this World Autism
Awareness day 2012 due to kick off on the 2nd of April.

Also I’d love you to right-click and save the art work, save and display. If so, thank you that is very kind of you all.

You can read the full article from which I sourced this information by clicking HERE and see

Related articles

• Help Me Reveal The Bigger Picture This World Autism Day (aspergersinfo.wordpress.com)
• Weekly Whirl – World Autism Awareness Day is 1 Month Away! (autismspeaks.org)
• Teaching Aspergers Children Self-Care Skills (eoghann.com)

Help Me Reveal The Bigger Picture This World Autism Day

Mild, what do you think off when you hear the word “Mild”?

A mild curry, a mild headache, a touch of man flu (or so some call it)!

Maybe you think of a mild case of chickenpox or a mild amount of pain?

Now, let me ask you,
“When you see a child of… let’s say 11 years old, throwing himself  aggressively around the local supermarket, red, hot and flushed,  shouting & screaming obscenities, refusing to walk, with no apparent  sense of danger, what do you think? Does the word “Mild” come to mind?

I didn’t think so!

If you were 100% truthful with yourself, my guess is, challenging, spoilt, dragged up, brat, may have come to mind! Although this is usually  never truth, I’m not about to jump into a written description on the worlds misconceptions or that of the importance of ignorance  (intentional or otherwise). I’ve done plenty of this lately. I will however agree that the word “Mild” is not one I’d chose to describe the above situation!

When you have a child with Aspergers Syndrome, who has displayed such  behaviours..more than once, you deal with it, though when you turn to another and inform them of your child’s diagnosis, for that person to turn around and refer to it as “Mild” you can’t help but want to  
SCREAM…

This misconception has just got way out of hand. Whoever chose to describe Aspergers as Mild was basically of their trolley! You see Aspergers is only described in such a way as to highlight the fact there is normally no intellectual difficulties, however social difficulties are just as pervasive as those children with what some may refer to as “Classic Autism“ the difference being that those children with a diagnosis of Aspergers Syndrome are normally fully aware of their differences, some even referring to themselves as not “Normal” as has my own child.

Those with Aspergers are not oblivious to the world around them… OK,  maybe while engaged in their “Special Interest” but other than this, the prospect that the child with Aspergers wants to engage with peers, having friendships like yours or mine, is always normally the case! The sheer frustration at not being able to always make these friendships or in many cases, keep them, is often too much for the child, hence the reason, so many children with aspergers find themselves diagnosed with depression or some type of anxiety related illness!

Now, I ask you again..”Does the word “Mild” spring to mind when you think of the above  
explanation It’s not a competition, I’m in no way even comparing the different types of autism, it’s a spectrum, where no two cases are ever the same! I’m just merely pointing out that the term mild is not actually a suitable one, as it is of course, taken out of context, leaving  
others (even teachers, and other professionals) expecting more than maybe they should from a child with Aspergers. It’s my belief, and that of many others, that this is likely the reasons behind high school exclusion rates, placement breakdowns in mainstream schools and  
so forth. My child is very literal, yet despite his previous school’s awareness of this, metaphors were continuously used by staff, during conversations with my child! He was just expected to get these quirky little phases, such as “Has the cat got your tongue” or “The teacher can’t hold your hand forever” so, of course being adamant that he never holds the teachers hand, he quite rightly informs the head teacher, to which he is ordered to remove his sarcastic tone, that or stop being thick!

The child with Aspergers, has to continuously adjust ones normal behaviour, something they are most uncomfortable with, to fit neatly into the life, that society expects and accepts.

Its common for many diagnosed with Aspergers syndrome, to receive a late diagnosis! This is true, but only due to the signs being suppressed by the child in question, as they either keep themselves to themselves, blending into the background or speak to one or two children, though not actually forming friendly relationships with them, yet teachers commonly mistake this as healthy peer relationships. What then will often happen, is once that child returns to the safety net of home, the bubble pops and like dynamite they explode letting go of a whole days bottled up frustration, becoming sometimes uncontrollable! Of course the parents reports such goings on, yet they are looked upon as one sided concerns! Teachers mainly assume the issues must be down to some problem in the home, why wouldn’t they considering the lack of challenging behaviour within school? This was certainly the case with Little man!

Suddenly something changes! As the child grows older, incurring a stronger urge for peer interaction, a low threshold for dealing with sensory inputs and lack of understanding of the social rules, Suddenly a flip in the childs behaviour may occur, one that to the school is that of a sudden change, to you, the parent…it’s been a long time coming!

The child may now stand out that bit more, maybe seen as a bit of a social odd ball as he goes about trying to socialise, they may then become targeted by the bullies! Sadly, due to the childs lack of social understanding, especially around the issue of friends, they may well find themselves as a target without even knowing it.  
Little man is, once more a prime example of this….. He was seen by other children to be a child who would easily break social rules (only due to the fact he was unaware of there boundaries)! As a result, when the bullies befriended him, the popular kids, he was proud to finally have a group of friends.This started during his fourth year of primary school and by the end of that year he had already undergone an obscene amount of formal exclusions and when he was in, he was being taught in isolation, heartbreaking, referred to by staff as a health and safety risk! As for the bullies who he mistakenly was proud to name his friends, these would do a number of horrible things, then stand back and laugh as little man got into trouble. An example would be, getting him to slap a teacher around the back of the head with an orange glove, he believed it to be OK, as it was just a game, “The Tango Game” surly the teacher would know this right? You can only imagine the reaction of that teacher! Worse, her unexpected reaction would shock little man in such a way, it would trigger more challenging behaviour, most failed to make the connection between the two and of course his education and self-esteem suffered greatly. As his mother, I watched him slowly putting the pieces together, the children not knocking when they claimed they would, his invite to a party becoming lost in the post, the fact they were suggesting he do things that he was now learning were not acceptable due to the repeated reactions these caused! This is the point when your child starts to accept that his actually friendless, being used and laughed at too! You, the parent watch as your heart breaks, you ask yourself, maybe it would have been better if he never saw the light, he continued thinking peers were his friends.

I hear hundreds of horror stories mainly consisting of discrimination and misconceptions. Like my own child, the child is never allowed on school trips, coincidentally excluded on the day of a trip or that when OFSTED visited school. What was worse was those times he was sent to work in isolation, mother and child completely in the dark that a trip ever existed… well, that’s in till some other mother mentions it! You hear her words, you play along, yet inside your crying,you’re screaming, rage ripping your insides to pieces. Even worse your child finds out, unable to cope with more rejection so he hurts himself by throwing himself into brick walls, smashing his head, scratching his arms drawing blood, or worse still… threatening to stab himself!

Please, I ask you once again…

Would you use the term “Mild” in association with any of that above? Would you?

Myself nor my son, and countless other families like mine, are not asking for your sympathy, your kind words, your half smiles as we catch one another’s eye across a crowded playground, though those things are incredibly thoughtful, we need so much more than this to make a difference!

We, need you to take just a few short minutes having read this post, to process what you have read! If you agree and only If you do… we need your help! I’m asking that those parents & individuals who don’t have a child on the spectrum as well as those who do (and anyone else who’s reading) takes just a few minutes to help raise awareness for autism and aspergers, this “World Autism Awareness Day“ (2nd April 2012)

How?

Bloggers… with the power of your influential voice, your blogs can reach a 1000 voices or more… Please Join me in creating awareness, by wearing something that resembles the colours that make up the autism puzzle or something that resembles autism. Maybe wear a T with the awareness ribbon or a puzzle piece displayed across your chest and back, paint your face, design an eye mask, just let your creativity run wild, then write on a large piece of card, “Doing it for World Autism Day 2012” hold it up, where ever you’re at and take a photo… the more funky and eye-catching the better! Post your picture to your blog adding a few words if you wish, state you’re raising awareness for world autism day and link your picture/post to the linky I’ll place on here on my blog!

You can tweet using hashtag #worldautism12 , post on the “A Boy with Aspergers” Facebook page and share any other way that grabs you.

Please it’s just one day, a few minutes of your time which will undoubtedly help spread awareness! I’m not asking you to raise money or even go to work looking like a clown! Like many other families all over the world, Its world autism day everyday in our house! I’m just  asking you to make it yours on the 2nd April 2012 (if only for 10 minutes) your reward… you will help create a better world for children like my Little man.

Non Bloggers

There is simply no getting away from it! Simply do the above but instead tweet your pictures using hash tag #worldautism12, Post them on your own Facebook page and to make it count by posting them to “The Boy with Aspergers” Facebook Page.

Those who can’t post anywhere, email them to me via address in sidebar of this blog and I’d be happy to post them out there for the world to see.

The final part of the plan

I will then hopefully have enough to create a collage of pictures of all those that took part, whether they held their awareness board in Sidney, London or New York, it will count.This can’t happen with a collection of one or two pictures! We need a huge amount to pull it off!

I will open the Linky on my blog at 11.59 on the 31st of March.

Please feel free to click and save the art work below to use in sidebars or within post, please link back.Please stay tune as there may be a few exciting surprise on the way too 🙂

So… There you have it! My plea for your help 

Help me create the bigger picture, I can’t do it without you!

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