One month, two peaks, three achievements… next?

So that’s World Autism Awareness Day gone for another year… a month since I shared ‘I Stand Quietly’.  Does any of this really make any difference?

Some might think that I just wrote a bit of a weepy poem and then sat back watched the cash roll in, but it was so much more emotionally challenging than I ever would have imagined.  I’ve read some emails I can never unread.

I am definitely different now.  Forever.  For the better on the whole.

Over the last month, my blog has had over 513,000 visits from over 440,000 people across over 100 countries.  Here’s the glory shot (I find the twin peaks particularly pleasing considering how many times boobies have been mentioned recently):

Then there’s countless others who have read ‘I Stand Quietly’ on another website like The Huffington Post, I can’t track them, and I think the sharing will continue to trickle through more visitors for a while.  I ambitiously hope to have touched at least half a million people all in all…

Many hundreds of them took the time to say they feel differently.

Some of those affected by autism say they feel less alone, I truly hope so.  That is a wonderful thing, significantly different to anything I hoped to achieve, and the thing of which I am most proud.

Some who were previously untouched by autism say they have learned something, that they will think and behave differently and that they won’t judge.  I won’t be there when they are ‘tested’, I hope they rise to the challenge.

A minority took the time to demonstrate their nastiness and ignorance with suggestions of horrific so called “treatments” like the infamous bleach enemas and, of course, there was the exorcism guy.

I am pleased to have heard from them too… I can get aerated about them for the sake of a blog post as I feel it helps people (who maybe doubted the scale of the challenge still out there) to see that crap like this really happens to parents of autistic kids.  But in reality, they don’t bother me: they are way too bonkers to worry about.  Poor sods.

I’ve raised £13,665 so far.  That’s hilariously more than the £250, then £1,000 target that I had set myself.  I feel like that amount of money can really make a difference over the next year.

And then, of course, I got my husband and a number of his chic Londonite advertising workmates into onesies, still waiting to get the final total on the money raised there.  His company is going to double it.  Fantastic and huge thank yous.

Awareness, wonga and onesies.  Three almost alliterative achievements. Plus beautiful Bara Brith and a bombastic boob-print bag, boy oh boy.

And (as yet unmentioned on here but thought about every day) there was the lovely friend from school who drove all the way over to my house with flowers and a hug.  Simply the best – thank you – love you for that.

But let’s skip the lyrical bullshit.  The percentages are weak, I wouldn’t still be in a marketing job with results like this.  Can. Do. Better.

Because there’s those, you know, look the other wayers.  Maybe a significant majority who clicked on and off, didn’t read it all the way through, gave up, uninterested, unaffected.  Anyone who has worked in online media knows a click doesn’t mean a read doesn’t mean an impact or a reaction…

It’s all of those who didn’t donate, didn’t comment: I can’t stop thinking about them.

AND NO IT’S NOT AN EGO THING.

I could speak for any prejudice, when I say it’s not just the few fanatics and extremists we need to be concerned about, it’s the ones who stay silent.

I am aware that I have absolutely blasted my friends on Facebook about all of this over the last month, and I am dead chuffed for all the support.  But if I’m honest, I’ve been left a little obsessed about the ones who over the whole of the last month of shares and statuses have never hit the Like.

OK, maybe ‘I Stand Quietly’ was too OTT.  The topic is awkward but I’m otherwise funny as fuck.  Conkers and cockatoos? What’s not to Like?  You want me to believe you disapprove of the swearing?  Up yours.

We’ve trained most reasonably intelligent members of society that discrimination is unacceptable, but what we’ve failed to do is inspire and educate all of them not to discriminate: there’s a significant portion who we’ve just made go quiet.  They judge, fear, feel misplaced anger and disgust and keep it inside.

They would rather we just went and did our autism thing somewhere else, please.

Or they still think my daughter is a spoiled brat and I’m a weak hysterical mother.  They are just too polite to say.

I’m not just being a cynic, I meet them all the time when I talk about my daughter: if someone is thinking it, you can see the mismatched emotion in their eyes and the involuntary lip curl of disgust/displeasure/disbelief in a smile however hard someone tries to disguise it.

They’re the dangerous ones.  Not just for better autism awareness and acceptance, but for any other minority and for society as a whole.  They are bringing up the kids that don’t look out for my kid at school.  They are voting (in the UK) next month blissfully ignorant of the poor state of CAHMS (if they even know what that stands for), of the lack of training for SENCOs and teachers, of the lack of therapeutic services.

They don’t understand or care about the impact of benefit cuts (or even benefits testing) on those with a hidden disability.  They don’t care about the job discrimination, the isolation, the despair… and they are simply lucky that they’ve swerved the A word having an impact on their lives so far.

Then there’s the notable rise of aggressive behaviour against home educating families by certain Local Authorities, overstepping their jurisdiction and in many cases breaking the law, fuelled by misunderstanding and prejudice that we’re all perverts or islamic militants…  Actually a significant portion of us are passionate committed parents, desperate to do the best by their intelligent (often gifted and talented) very high functioning ASD kids who’ve been forced out of mainstream schools due to bullying or lack of support and who will equally flounder and fail to achieve their potential in typical broad-based special school provision… (more on that another time).

So a difference has been made but the job sadly isn’t done.

So next for me?  Perhaps a little break from being just autism Mum on here.  Light refreshment is required.  I need a laugh.  So expect puerile humour, possibly at my darling husband’s expense, the odd snarky atheist rant, silly dog stories and who knows what else: I’m going to get dirty, naked and happy.

And then, offline, there’s the ongoing challenge of rebuilding my daughter’s self-esteem, courage and sensory resilience so we can get out of the house.

Otherwise, there’ll be no barking at strangers and so I won’t be able pick out those look the other wayers who still need me to give them a big smile and a shiny Birkenstock of autism awareness booted right up their ignorant arse.

16 thoughts on “One month, two peaks, three achievements… next?

  1. Reblogged this on patc44's Blog and commented:
    I am one of those CAMHS people, who’s job it is to make the journey of families like yours through the ‘system’ as pain-free as it can be. I have an understanding – my children have their own issues & I try to be compassionate to the families I come in contact with. But unless someone tells you why children or adults do what they do, how are you to know? You will always get someone who will judge, and make nasty comments, or ignore you – because they don’t understand what is expected of them.
    Thanks for sharing your stories with us, it goes a long way to educate.

    Like

    1. Thank you for taking the time to comment… I would love to meet with some like you at CAMHS but all the referrals we have had from school, GP, OT have been rejected as our situation is not severe enough… I feel for anyone who works in a service that is SO stretched that a child who self harms (irregularly) says she wants to die (more regularly) has extreme sensory issues made worse by acute anxiety phases and a lovely ripening set of OCD and tic traits doesn’t make the grade… I honestly don’t know how you do it… Or maybe it’s just that bad in Croydon.

      I do agree with you that people who don’t know why someone behaves a certain way, don’t know how to react… To an extent…

      I had a conversation with a lady in Costco once who was tutting and muttering about how my daughter was inadequately dressed for the weather and how disgusting a parent I was…

      Once husband and daughter safely out of earshot I asked her nicely why she would assume it was because we didn’t care or know better… Why didn’t she assume there must have been a reason? Why didn’t she credit me with the same parenting skills, devotion, emotion as her?

      She burst into tears, (that was awkward)! She admitted she just saw our daughter looking different and felt angry and spoke to make herself feel better.

      I loved her for her honesty. I wish more people could be that straight with themselves and without a prompt.

      Sometimes I see people I don’t like the look of, that trigger a gut response that is powerful and primal, I believe it’s a legacy evolutionary defense mechanism that has served us well, hard to fight it…

      …but we have evolved and we must fight it. And those of us who understand first hand what it feels like to be judged have to bite down on our own feelings of injustice and keep educating (as politely as we can, yes I know I have some development to do there!!) xxxxxxx

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      1. Lots of systems need an overhaul, not just in Mental Health. There will be a service or two or three who will be able to help and support you, with a diagnosis, or weekly help, or pointing in the right direction. Sometimes these don’t materialse quick enough, and I appreciate you feel that you are being left to flounder on your own. Would I sound patronizing if I said persevere? Its not meant to.
        I’m sure lots of us see things we would like to blurt out a comment about, but we don’t. We keep it in side- because we have the compassion not to. And even before I worked in the service I work in, and didn’t know anything about disability..I wouldn’t have said something like the woman in the shop to you!

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          1. Of course you will, and I’m sure that in the mean time, you will be supported by those around you, however way they can. And sometimes life will be calm, and sometimes you will feel like you are on a coracle on the ocean, without a paddle! but hopefully those times will give you some strength to carry on.

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  2. Thank you from a mom in the US. “I Stand Quietly” brought back a flood of emotions. My child on the spectrum will be 18 in another week. What a journey! There are still many challenges ahead, but there has been so much growth. I wish you and your family well.

    Like

  3. I am so lucky. I haven’t had any problems with my girls, so far. Asperger’s hasn’t had any negative impact on our family. Maybe because they both have asperger’s so we don’t know any other way, or maybe because we live in smaller suburbs, I honestly don’t know, but we’ve never had any problems with schools (touch wood) both are now in senior school, but it’s a smaller school with about 800 students, which is half of what most senior schools have, no issues outside the house, and even at home I’m told they are better behaved than most “normal” kids, they get a lot of support from gifted & talented, as I said we are so lucky. My brother in law is at the other end of the spectrum, he is now 19, non verbal for the most part, and will never be able to live independently. When he lived in the UK the help my parents in law was completely non existence. Trying to find a special needs school was just a nightmare. Then my parents in law moved to Spain. The difference in care he received was like night and day. The special needs school has taught him how to eat, clean his teeth, it’s an amazing school which he will attend until he’s 21. They also teach the children a trade, and help them so they can have assisted living, where he will have his own place to live but there are people on site 24/7 in case any help is needed. I wish we had school like that here in the UK, they really are worth their weight in gold.

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  4. I was also offered an exorcism on my little guy from the catholic church (I write about it in my latest post if you’re interested). What a horror.

    I thought your writing was profound and beautiful…you’ve affected a lot of people. Perhaps not everyone was affected, but that’s not even possible. You put something out in the world and the world was made better by it. Amazing!

    Like

  5. I agree with you that it’s those who stay silent we need to challenge & educate. The people who tut or remark when you’re walking in the Lake District with a 6 year old dressed as Batman having a meltdown because they can’t ‘be the leader’ are much easier to approach or address.
    Keep up the good work. You’re feisty, funny & like to talk about boobs. I salute you 😁
    P.S. Your poem really touched me & encapsulated many of my thoughts & feelings. Sod the negative feedback x

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  6. Your poem was what inspired me to get out here on WP and start writing about my experience of autism as an autistic adult. My start coincided with Autism Awareness Month, and I’m posting to Twitter as well. 140 character summaries of what it feels like to be me. Until people see us expressing feelings, they’re going to carry on believing the myth that we don’t have any. While they don’t believe we have feelings, they’ll keep telling themselves that their abusive “cures” are ok. We need to get out there and humanise ourselves to them.

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    1. Yay! Good for you. I find blogging really therapeutic as well as taking advantage of the opportunity to reach out to people. Is it a new blog? I saw on Painted Hide you are taking a break…? IF you send me your twitter name, I will follow you!

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      1. on twitter I’m @autisticfeels. I’m taking a break from Painted Hide while I deal with exclusion diets and such. I suspect some of my food sensitivities make it harder for me to connect spiritually, they can really put me in a different headspace.

        The new one is howautisticfeels.wordpress.com, and I’m toying with one for my trans* issues too, but I’m not confident I have enough to talk about with that to fill it just yet.

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