Wednesday, 2 April 2014

2nd April - World Autism Awareness Day

April 2nd is World Autism Awareness Day - and across the world buildings are being lit up with blue light to "Light it up blue" for Autism Awareness. 

ADHD is a condition which is commonly co-morbid (often occurs with) with Autism, and certainly we have both here. So for us, it's "Light it up PURPLE" day as we raise awareness for both conditions. Both very real, both still very misunderstood. I recently wrote about ADHD Awareness here  and there is an excellent online leaflet about Autism Awareness here.

Living with Autism 

It didn’t start well.

After a traumatic labour with my eldest son four years earlier I was extremely apprehensive at the thought of going through a similar thirty hour labour. Given the inescapable fact that I was hurtling past full term carrying what the scans testified was a baby with a large bowling ball for a head I wasn’t desperately encouraged that the obstetrician's view that “second time was usually easier” could possibly be true.

It wasn’t. Nearly three weeks overdue I was induced and my baby became very, very stuck. Like so many mothers of children with disabilities I frequently find myself wondering what, if anything, might have “caused” his difficulties? What could I, should I have done differently? Because nearly losing your baby before he even makes it into the world is not a good start. Not emotionally, not physically...... For either of you.

It was a traumatic first few months. Reflux aside, I knew things were not quite “right”.

Picture the scene - there is a crying baby, sounding inconsolable and you know its mother is in the room. You would be forgiven for assuming the baby is crying because its mother is not (yet) holding him/her. However you would be wrong. Harry cried when you held him close, settled when put down (as long as he wasn’t refluxing) and detested being fed as that involved restricting his movements. Weaning was a revelation to him, food without cuddles, no eye contact required. Solids from 5 months, by 8 months he was having ab-so-lute-ly nothing more to do with adults feeding him, despite lacking the dexterity to self feed effectively. Where there’s a will and all that - and boy was there a WILL.

Children on the Autism Spectrum frequently feel out of control of their environment, and constantly seek to exert control to feel safe and less anxious. This is our biggest challenge now Harry is older. There are frequent tantrums and outbursts, and the more challenging prolonged, emotionally all-consuming displays of anguish often referred to as “Meltdowns” are still common and have escalated over the years. We really struggled when he was younger, it can be unbelievably isolating having a child with Autism. My child would be the one hitting and biting well beyond toddlerhood, non verbal until he was nearly school age. Of course I asked for help, but high functioning children all too often slip through the net. So I blamed myself. - Well it’s what Mums do, isn’t it? And sadly, it’s what so many outsiders do too.

I remember well being told that I “Shouldn’t have been “allowed” more children as I couldn’t control my son. Nice. Really depth of understanding there. There were times when I wanted a badge to say “It’s not HIS fault and it’s not MY fault”. Then the National Autistic Society produced controversial T Shirts along the same lines. What a Godsend. Stop the conversation before it even starts….

We fought the system, obtained a full Statement (35 hours a week currently in Year 7) and have considerable support now. But it doesn’t detract from the exhausting, often overwhelming task of parenting a child on the Autism Spectrum.

So imagine what it is like actuating LIVING with it.

Partly for this article, and partly to try and help understand the social difficulties my son is currently having I decided to ask him. And this is what he said in a rare moment of self-awareness:-
 “I just want people to like me. But often I cannot remember what I should say, what is the right thing to do and when I’m hearing nothing but the clock ticking, am aware of the smell of everything in the room and listening to my breathing get faster I just can’t THINK or decide.”  
He is desperate to be socially accepted - and he does have friends, but his difficulties do undoubtedly get in the way. Someone with Autism has delayed social and emotional development. They will and do make progress, with those who are high functioning progressing at a faster rate and to a higher end point, but it’s exhausting. All too often I hear other parents of children on the spectrum repeat the accepted fact that evening behaviour is really challenging, often after a long day of “holding it all together” in school. And the end of each half term is often more challenging than the beginning, children are on their knees and in desperate need of a break.

Sensory issues are common in those with Autism, when younger Harry would identify his school sweatshirt from the “Jumper Box” by smell alone. He couldn’t access the school hall (where lunch was eaten) any time before or after lunch or he would retch, and the sound of an aeroplane would send him to the ground on his knees with his hands over his ears. He hates seams in his clothes, cannot bear to be tucked in and for a long time would only wear blue. He would need familiar smells from home with him in school, and a dark, safe space (pop up tent) to hide in and calm down when distressed. We have undoubtedly come a long, long way.

Those with Autism find prioritising inputs extremely difficult. I imagine life is like having several hundred emails in your inbox at once, all flagged as high priority. It’s utterly overwhelming. Harry still, at twelve, needs me to lay his clothes out in order, pack his school bag and either text him lists/reminders or leave him notes. He has progressed from visual picture timetables to written ones, with laminated visual reminders blue-tacked on his wall. Organisation is a massive issue. He has only just begun to complete homework at home too - because it’s school work which surely should be done at school?!

None of this makes you socially more acceptable. Despite a wicked sense of humour and the ability to understand incredibly complex issues he isn’t excelling social or academically. There is always that necessary coping which must come first - and doesn’t always leave much energy for social or academic success.

Kids with ASD are emotionally needy and oh-so-young. They need families, need support, nurturing and understanding. There isn't a magic wand, there often isn't an alternative to mainstream school - particularly for the high functioning. It’s a struggle, for them and their parents.

I’m told H might not reach his "academic potential" as he is undoubtedly very bright, but what is that in reality? This twelve year old son of mine is programming Java using IntelliJ, teaching himself coding via YouTube and adapting the code (and cursing loudly) when the offered code fails to work. His current skills would earn him a IT GCSE if he could see the point in taking the exam, almost A level grade and I have no doubt whatsoever that he will be extremely successful in life.

So we will muddle on, learning from each other, taking the rough with the smooth. You see, when it comes to support it isn't *just* about resources, it's about people. It's about what makes our children who they are, their individual quirks and needs. My son needs free Java flirtation time, space to keep the world out, time to bake and to cook curry with his mum, knitting with his Granny and gardening with his Grandpa. He needs to watch Tracy Beaker on loop for four hours at a time on a challenging day, guard his Pokemon Card collection and sleep with his Polar Bear close at night, under the photo of his beloved hamster. How in the world can the hope of any academic qualification top those achievements and securities?

A child with (high functioning) Autism is a jumbled up mixture of super intelligence, emotionally and socially compromised functioning, in a patience lacking, control seeking, security craving, sensory obsessed or impaired individual desperate to be accepted. Normal is only what we define it to be - there is really no such thing as neuro-typical, we are all quirky in our own way. And the more we attempt to define and partition personality, ability and individuality the more we leave people out. Difference should be embraced and celebrated.

So I will leave you with this photograph. I cannot tell you how much this photo means to me.

This is H, doing his homework. Now that in itself is a major miracle - but this is voluntarily doing his homework. At 4pm, not 9.30pm at night after an hour-long meltdown. One of those very rare and special occasions, when you just look, and smile, breathe deeply and relax because this is a GOOD moment.

(Please note the absence of coercive techniques. No bribery was used in this scene.)


  1. my mum has an old uni friend who has a daughter with Autism, she is 25 years old now i think, unfortunately if you dont know their family and see the girl for the first time she looks as if she has schizophrenia, as her mum wasnt aware about educating a child with Autism, I dont think she even went to school, and now she is 25 doesnt like to see people, hides when someone comes to visit them and you will never see her having a conversation with someone except her mum..thats really horrible i think as she cant rely on herself and totally dependent on her mum

    1. Unfortunately with invisible conditions like Autism - or schizophrenia which is quite different, it is often impossible to see how someone is struggling, or indeed what they are actually capable of. Twenty five years is such a long time, thankfully there HAS been a huge increase in awareness and understanding, and had your friend's daughter been born more recently she would probably have received significantly more input and support. So very sad.
      Thanks for commenting.

  2. It's great that there are so many posts about Autism out there today - I know I've learned a lot personally so my understanding is much greater because of the posts I've read. Well done for raising awareness x x

  3. Second personal post today on the subject, thank you for sharing! It makes me understand a bit more about this condition and show even more respect to the parents of autistic children!

  4. I knew nothing about Autism before I started reading a lot of blog posts on the matter. Sounds like you have been through a tough time. Really interesting read.

  5. I've read a few articles today about Autism... my heart goes out to families learning and living with all the joys and the trials that come with Autism. I do wish you all the best and thank you for sharing such a touching post.

  6. Thanks for the post. I had learnt a lot from it!

  7. Well done for highlighting such an important issue x

  8. It is wonderful reading all the posts telling the truth about living with autism today. I hope that World Autism Awareness Day does increase understanding and awareness and make the general public realise what an incredible job the parents of children living with autism are doing every single day.

  9. Loved reading this and loved hearing how Harry is doing. My 4 year old son Toby has autism and is only just verbal enough to be able to ask for what he wants. It's very broken and we use PECS to help him. He has quite high sensory needs in terms of needing to move a lot and he learns by having music on in the background, comforting to him. I see so much potential in him but it's been hard as the so called professionals dismissed his capabilities. We are going it the home ed route as a result. Would love it if one day Toby would sit like your son doing some work. Here's to differences and quirkiness xx I had an emergency section btw as he got stuck and as a baby all he did was cry, proper screams when we held him and x10 if we didn't. So hard.

  10. I don't have any experience of this so thanks for sharing

  11. Thank you for sharing. It helps to educate others who don't have first hand knowledge

  12. This is the second post I have read on this today and I am starting to understand what it is now. It must be so hard coping with it at times but also rewarding when something goes well. Hope you get all the support you need x

  13. fascinating read. and so absolutely shocking that anyone would think or say that you or anyone else 'shouldn't' have another child because you have one with autism.

  14. Thank you for sharing your story about autism. x

  15. thanks so much for sharing, it's a real eye opener xx

  16. A wonderfully frank post. I often blame myself for my sons ASD/ Aspergers because I was taking a hormone to put me through the menopause in very early pregnancy (I had been told I would never conceive and shutting my hormones down for few months would possibly help). I am full of what ifs, what if I hindered his development. He is a wonderful boy but it is hard work and posts like this go a long way towards helping people to understand.

  17. Such a beautifully written post and on such an important subject. It sounds like you're doing an amazing job as a mum. Thanks for highlighting the difficulties of living with autism. You're doing a great job of raising awareness of it. And am in awe re your son and his Java.

  18. Love that picture; I dream of the day when my girl actually wants to do work! I think his comments are very telling and a good way for us all to understand how he feels. Tough for us, but even tougher for them x

  19. Thank you for sharing.
    We do need more awareness posts like this.

  20. Thank you for writing such and informative and helpful post. I blame myself for my childrens autism . I think as parents we do feel it is our fault, but we know it isn't. I love the fact that your son is learning coding

  21. I have learnt so much this month about ASD. Thank you so much.


Many thanks for taking the time to comment, I really value your responses.

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