Sunday, 2 April 2017

World Autism Awareness Day 2017

I wasn't going to write a separate article today.  What have I got to offer? I thought.  What can I possibly add to those who are way more expert in this arena than me?  What can I say that hasn't already been said?

But I can't not write. I can't not add.  There IS still so much to be said, so much to be learnt, so much to be done.

I am an Autism Mum. My children are both diagnosed with Autism Spectrum Disorder (a title I HATE with a passion!).  I'm wholly comfortable with the diagnosis of Autism. I am wholly uncomfortable with the label "Disorder".

And, as every Autism parent knows Every Day is Autism Awareness Day.  We are so, so aware. Every day, all the time.

I have seen much on social media urging us not to Light it up Blue.  I think I am growing to understand this sentiment.  My son is younger than my daughter, yet he was diagnosed first.  So yes there is still that misinterpretation that Autism is a male thing or that it is more prevalent in boys.  I don't buy this.  The stats may show it is more diagnosed in boys - we are yet to determine if it is more prevalent.  Until we have an accurate diagnostic tool, and so, so, so much more awareness, we simply will not know.

My daughter was diagnosed 15 months after my son, and largely it was my son's diagnosis that helped us FINALLY secure a referral for her to even be seen and assessed.  Even then it was a battle, because she was intelligent, and verbal, so she couldn't possibly be autistic could she?  Aaaaargh!!

My son's diagnosis took 3 painstaking, expensive, battling years - because he was good. He was a good boy who suffered massive separation anxiety, so that had to be it didn't it?  I was a fussy mother.  I needed to 'cut him loose', he needed to 'toughen up a bit'.   Not at all.  I was his translator.  In a world where nothing made sense, I was constant and I made sense.  I would translate to him and for him, all the difficult social and sensory situations he couldn't navigate.  Remove that translator and the world was a terrifying place where he was lost and scared and alone.  But they missed all that, for half his little life, despite him also having ALL the early signs - poor eye contact, unresponsive to his name being called, speech delay, speech and language referral, unable to sequence events, unable to predict cause and effect, unable to read facial expressions, unable to determine hot/ cold - the list goes on and on and on.  But it was all missed, by everyone, all the time.

I am thankful for a GP who believed in us.  Who referred and referred and referred again.  Who, despite endless rebuffles and a request to "desist" continued to believe in us and fight for us. 

It's probably because of our diagnostic journeys that I also have issue with the Puzzle Piece autism symbol.  My kids have never been a puzzle to me.  It was clear as ******* day that they were autistic.  I will admit it took a deal longer to finally 'get it' with my daughter.  We thought it was a number of other things, and she ricocheted between counsellors, therapists, CAMHS, Educational Psychologists etc for years before we finally realized that actually she just wasn't getting it.  Yes she was staggeringly bright and astute but she had literally no social or emotional understanding at all.  She actually really didn't understand why she could just go up and take that swing away from another child and go on it herself, she really, really, didn't. She didn't even "see" the other child, she just saw the motion and thought "ooh, swing".  Like an infant would.  And she still does.  Despite the theraplay, the social stories, the context placement - this is still a massive struggle for her but it is truly not that she is being mean, she really does not see!

We do a lot of social stories and a lot of therapeutic parenting at home.  As we home educate, I would say as much, if not more, time is devoted to social understanding and life skills as is given to actual 'lessons'.  And that's fine with me, great infact, as I know this is what they were not getting at school.  Maybe once a term the SENCO would take my daughter to a 'focus group' and spend 15 minutes talking about 'Bullying' or 'How to be a Friend' not realizing that talking without pictures would make no sense to her at all, and that even with visual reinforcement she would need these visuals to be constantly available to her in order to apply them.  She couldn't 'remember' and 'implement' them herself without context and prompting, ever.  So they would throw their hands in the air, call me in to school and protest "but she did the bullying workshop"! 

And my son, had 1-2-1 time daily with a TA working on recognition of facial expressions and sequencing of events.  1-2-1 time, every day, for TWO YEARS.  But no, he showed, absolutely no signs of Autism........

So I guess I can understand the puzzle symbol for the 'professionals' as, in my experience, very few of them actual get it.  And even with the puzzle pieces, a picture and the instructions  right in front of them, still can't piece it together!  And that makes me sad, angry and sad.

But my children aren't a puzzle to me.  They aren't blue (which, by the way, was historically a colour for girls!  Pink was a more expensive dye to produce so this was reserved for the clothing of boys, blues and greys being the cheaper to produce and therefore reserved for the 'less important' girls.  So the whole gender blue thing is topsy turvey anyway to my mind), they aren't red or any one colour in particular.  It's called a spectrum for a reason, a glorious, colourful spectrum.  Unfortunately for us the rainbow is already taken, as I think that far better describes my children than a puzzle piece or one set colour.

But we could argue all day about how best to respresent it.  The important thing is that autistic people and autism families are raising awareness. Flying the flag. Promoting acceptance. Sharing the love.

And it's not easy, it really isn't. Every day is a little bit harder than it should be, fact.  Granted there are times that are magical and wonderful but day to day life takes longer, is harder, requires more input, more management, more planning, more resilience, more prompting, more aids.  For me it's this that I would wish friends and family could understand or just believe.  You don't need to see our child rocking and screaming on the floor to know they're struggling.  Just believe us, please.  And understand when we say no to a particular thing (usually special occasions - please understand they are not special to our kids, they are terrifying and stressful and confusing and overwhelming).  Trust us when we say we can't get a baby sitter - we really can't, it's really not that simple because we are not talking about an adult we know keeping them safe for a few hours. We are talking about the build up, the lead in, the preparation, the social stories, the actual event and then the diabolical de-stimulating, delayed processing afterwards that can take days and weeks and leaves us so wrung out and exhausted, it really wasn't worth those 3 hours and Pizza Express with you!

That is the awareness I would like to raise. 

Thank you for reading xx


  1. Fellow autism mom, first time reading your blog. Nice! The hardest thing for me sometimes is the isolation. I went through a time period, where it seemed all my facebook acquaintances were posting cute pics of their babies babbling, saying cute things and I wanted to cry. I didn't have any cute stories to tell. A baby smearing feces on the wall wasn't cute. And to tell of a story of a child biting me or hitting themselves was not "like" fodder. I went to a parenting conference about disciplining children, and realized that there was a presumption that your kids could speak for themselves and advocate their own needs. My kids were nonverbal, so I left the conference. I have to admit, I take a break from facebook, from time to time, because the things people complain about their kids doing(talking too much, arguing with siblings) I wish those were my only problems. Not the danger of my boys running out into oncoming traffic, or taking down their pants in public and laughing about it. Thanks for sharing!

  2. Thanks for reading & for your comments.

    I totally get what you mean. The number of times in the playground I wanted to just cry when other Mums were talking about really banal and trivial stuff and I just wanted to scream THAT'S NOT MY LIFE!!
    Not their fault of course, but it can be a very lonely & isolating place to be.
    My children are both highly verbal so it is often assumed they can advocate for themselves or that they know what they are talking about when the reality is their social understanding and understanding of language is on par with a toddler still.
    And yep, I hear ya - we've had the poo smearing, the running into the road, the inappropriate boundaries....
    But we're an Army - the Autism Army. I started this Blog so that my fellow Army Mums & Dads know they are not alone. We are in this together and there are others who understand xxxx