Autism – what is really all about?

Autism Spectrum Disorder, or ASD for short, affects one in every 68 children in the UK.  Autistic children grown into Autistic adults.  This means that 500,000 people in the UK are autistic. Unbelievably this means that two million peoples lives are touched by autism every day.

There is a spectrum of autism for a reason and its as wide as its long.  No one person is the same as another; pretty much like any human being; everyone is an individual.  However, this does create a small problem when it comes to trying to explain autism.

I don’t believe many people can honestly and truthfully say that they understood autism until they were directly effected by it?  I defiantly couldn’t! However five years ago I had a son, C who was born with autism.  I now live with it every day.  It never goes away and it never will.  I have had to learn a lot and fast.  Sadly, but very unsurprisingly, one of the biggest things that I have come to realise is the complete lack of awareness there is about autism.  I myself have just said I knew pretty much nothing about it and yet I now want, and expect everyone else to get it.  What people do know, seems to have come from either the film, Rain Man or the book, The Curious Incident of the Dog in the Night.  OK, this might be slightly unfair but its not that far from the truth.

Right, here goes; here’s my take on ASD.  I can only tell you about it from my point of view.  I am no autism expert but I am an expect in my son and he has autism.  I am still learning all the time and I will never stop learning.  I am not Autistic and I am not claiming to even begin to understand what it is really like.  If only I could, I would be able to help C so much more. But I am a mummy who is trying endlessly to fully understand it, and help others to get it!

So here is a sneaky peak into our little world which I hope might help explain it just a little.

C is now 5, and I am still waiting for a full nights sleep.  I was not expecting to be sharing our bed with a 5 year old. Anytime from 11pm we will have a visitor.  You may say, put him back into his own bed.  Trust me we have tried.  But one thing no one wants is a meltdown at 3am. Before melatonin it would take an average of 2 hours, ever night to get C asleep. Melatonin does not last all night, so if C properly wakes up from about 2am, that’s it, he awake. And he doesn’t do awake quietly.  Autistic children do not sleep.  It’s not just parents saying that, it’s true; horribly true, kids with ASD don’t sleep. Coffee was invented for parents who have autistic kiddos.  So there is a reason we don’t tell C to go back to his bed.  Every night after being kicked in the head, duvet stolen and told to move, I get up and go and get into G’s bed.  What little sleep we do get is far too precious to worry about bed sharing.  T and I have not woken up in the same bed for over 2 years and I can guarantee you that this is not uncommon in an ASD household.

I never dreamt that when, as a family, we all snuggled down on the sofa to watch a film, we would actually watch the same 5 minutes, over and over again. I never thought that for two months of my life I would have to watch all three Toy Story films in a row, every single day.  I could never have imagined the extreme consequences of the TV box deleting off certain episodes of certain programmes.  Who would have thought I could have name all 52 Abney & Teal episodes or over 100 Octonauts episodes.  I also now know more about Dinosaurs than most trainee palaeontologists.  People with ASD tend to have pretty obsessive traits.  It is reassuring to watch the same thing over and over.  It brings comfort in the ever changing world around them.  Its also pretty common for them to become fixated on certain subjects, needing to know every possible fact going.  That is all they can talk about, not realising that other people are just not interested.  I have read so many dinosaur books and watched every dinosaur programme ever made, and not just once or twice.  Hundreds and hundreds of times – I don’t even like dinosaurs!!

You think your life gets tough when the WiFi stops working. Trust me, it’s really not that bad.  Pop over to our house however and see what happens.  Meltdown central springs to mind.  Now a meltdown is not a tantrum.  A meltdown is more of a panic attack. It’s not something that can be controlled and you can’t just make it stop.  A child having a tantrum can turn it on and off, they will make sure you are watching, and on a bad day, it might last 10 minutes.  A meltdown is very different.  You cannot snap a child out of it.  It can easily last for an hour and they don’t care if you are there or not.  I get hit, screamed up, anything and everything thrown at me; it’s horrid.  My first reaction now, if at home, is to move anything that can be picked up and thrown or that C can hurt himself on.  Followed quickly by me removing G as he is not older enough to understand he will be hit.  If a meltdown happens in public, which is one of my biggest nightmares.  I pick C up, screaming and kicking and run to the car.  Having to deal with a meltdown when not at home is bad enough, having to deal with judgemental looks and whispers from others about bad parenting is just one thing to many!

Meltdowns don’t just happen because the WiFi isn’t working.  The be honest, the meltdown hasn’t really happened because the Internet has broken but more because there was no warning.  Change is a massive issue.  Children with ASD need to be in control.  They need to know what’s going to happen next.  C hates the doorbell ringing, it means someone has turned up at our house without warning.  The house phone ringing is just as bad.  The postman now leaves parcels in the pouch.  He even signs for them himself because he has been screamed at so many times. I have been locked out the house in the pass when a delivery has arrived because C was so upset.

I have cooked more chicken nuggets, sausages and home-made pizzas than most.  And oh boy don’t cook the wrong kind of chicken nugget.  C can tell if I get red juice from the wrong shop.  As he can tell if his crisps are not “his crisps”.  Don’t ever think you can fob off a child with ASD with a different brand than the normal.  They will know and won’t eat it.  Don’t try and be clever and put the cheaper brand into the old more expensive branded packet; it doesn’t work.  Trust me, I’ve tried and failed!  I hate tomato ketchup, really hate it.  But I have it in my handbag, I have it in my car and I have at least one spare bottle in the cupboard.  C will not eat food without it and I am not taking the risk of not having any.  Bread needs to be cut up into squares, and only squares.  Food must not be touching on the plate.  Ketchup must not be touching anything, even though everything has to be dipped into it.  I am not a soft touch, but this is how I rock and roll these days!

Sensory problems are incredible common with people with ASD.  In our house this means that, if you have ever pop over, and are allowed in, you will have been very likely greater by a naked child.  I can often tell when C is stressed, because he takes off all his clothes.  I have a pile of pretty much unworn clothes upstairs because they are itchy, don’t feel right, the label is in the wrong place or something else feels funny.  I can’t use washing powder that smells, I have stopped wearing perfume.  He hates me using hair spray and I have had to stop wearing wool jumpers; they are scratchy!  It can be snowing outside but we cannot get C to wear a coat – he doesn’t realise it is cold!  He doesn’t like the rain but loves playing in the bath.  If he gets too hot, his body can’t cope and this can easily result in a meltdown.  When he gets really excited, stressed, or has been running around, he gets bright red stripes across his face – his go faster stripes.  This is his body showing me that I need to step in and slow things down.  He is becoming overloaded and overwhelmed and any minute now he will have a meltdown.  If he gets really excited he sweats like he has just done a 5km run in the middle of the summer.  This is another warning sign that he needs to stop.  Easier said than done.  He is not in a mood to stop now and so by me trying to stop him and calm him down, in itself can result in a meltdown.

Autistic people are very literal.  We have had a few laughs about this when C has pulled his pants down – looking for the ants, whilst looking at you like you are crazy.  We have hunted for the cats and dogs when raining hard.  And don’t think you can say “just give me a second”.  That means he will count to 1, you have one second!

Something I had always imagined when T and I had a family was the lovely family trips and holidays we would enjoy.  This is certainly not something that we have ever managed.  Many Autistic people hate big crowds, hates lots of noise and find being away from their safe and familiar surroundings of home very hard.  When we do venture out, we get somewhere when it opens, so avoiding queues and hopefully as many people as possible.  We normally manage an hour, 2 hours if we are lucky before it all gets too much.  Going away on holiday, even staying with family is extremely stressful for everyone. Only our house is C proof,  We have window locks on all the windows, we know the door is always locked.  We know he can’t escape from the garden.  He has his space to hide in when things are too much.  We have the right food, the right bed, its our home and we can control what goes on.  It also doesn’t matter if he is naked all day, jumps for an hour on the sofa or just runs around the house.

This leads me onto one other thing that I have always found extremely hard.  Most children, especially when young don’t like to wander far from their parents.  They like to know where people are.  However C has never been like this.  I am not allowed to go away without warning and don’t ever think I can go away for a night but he will freely just disappear.  He never says he is off, he won’t let you know where is is going.  He just goes.  He has no fear or understanding of consequence.  He knows where he is, so of course you also do… He will just let himself out of the house; locked or not.  In the past we have found him in the garden, up trees, on my fathers tractor and more times than I can count by the stream, and often in it!!  He will climb out of an upstairs window, run out into the road or jump off a massive rock.

Life is full on.  Life is crazy and I don’t really ever get a break.  T and I have never managed a night away without our children since they were born.  I think we might have been out for 3 meals together in the last 5 years.  Its not easy getting someone to babysit and to be honest, I wouldn’t be able to trust most people to fully understand what is involved.  Being a parent of someone with ASD can be seriously lonely, and handwork doesn’t really sum it up.  You can’t meet up with friends, you can’t go to the park and nothing can be done on the spur of the moment.  There is no cure for autism.  But what there needs to be is better knowledge and understanding.  This would mean better awareness.  I am never after people to feel sorry for me.  I don’t feel sorry for me,  I just want a more understanding world for my son to grow up in, and I don’t feel that is asking that much!

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7 thoughts on “Autism – what is really all about?

  1. Melatonin CAN last all night. My Girlie is 14 – with her growth spurts and puberty, we had to find the right dose (which isn’t a lot, but we had to creep it up tiny bits). There’s no way she could handle high school without sleeping. We didn’t start melatonin until she was 12, so I really understand your issues with sleep! Talk to his doctor. Good luck!

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  2. Reading this is actually so comforting to me, it is almost exactly my life with my 5 yr old although we are only just going through diagnosis process as the community peadiatrtion said after watching him for a total of 20 mins in 3 visits to Nursery and home that he was “just a naughty boy”
    Well this “naughty boy” at just 5 yr old was excluded in the first term of primary 1 for his melt downs ! Luckily i have fantastic support from other p1 parents but the school isn’t so !
    Thank you for making me feel “normal” that I’m not the only one going through this xx

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    1. Promise you aren’t alone. And neither are you regarding the joyful journey of the dx process!! Stick with it and fight for it. You know your son better than anyone and don’t let them make you doubt that. Drives me crazy!! Good luck and never think you are alone even when life feels so lonely at times xxx

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  3. Schools, health workers, doctors, 12yrs, before a diagnosis, now 26 my son is still trying to manage his life, on the plus side he manages to work, feed himself and is a father, he has relationship difficulties and doesn’t conform to life as others think he should, support is in short supply, but I love my son . Understand we’re you are coming from good luck, keep strong, remember you know your child, fight the authorities all the way.

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    1. Couldn’t agree more. I seem to do often give that advice myself. Sad isn’t it that is what we end up saying “Fight for them”. That seems to be s lot of what being a ASD mummy is all about. Xxx

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  4. It’s good to know that we are not alone. My son is 5 also, he is high functioning but I think that also brings an added amount of difficulty. My LO is similar to your son. Apart from he is so scared of getting lost. If he looks around and does not see me he runs like a crazy loon for the nearest exit thinking I have left him. Now he can run fast, no matter how much I shout saying mummy is here it’s like he loses all reason. On the other hand if he is absorbed by something that is it he is lost until he can figure that out, or touch and explore. I try explaining to the school about his meltdowns but they look at me as if I am making excuses or am not hard enough in him. I could go on and on. Thank you for being open, we need more of this to help create understanding!

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