We might all be on the spectrum…but we don’t all eat our slippers!

Yesterday I had two separate encounters with people who independently said in conversation that they felt everyone was on the autism spectrum somewhere. And I happen to agree.

I am a parent of two children, both diagnosed with autism, and I see autism everywhere.

Take the man that spoke to me recently in a coffee shop. He stood far closer to me than I was comfortable with. And whilst he rattled on and on and on about the subject he was interested in he never seemed to notice I was looking at my watch, putting my coat on, and generally giving the impression of having to leave. I wasn’t being ignorant, but I had other commitments and this gent was someone who I barely even knew. The chances are he is on the autism spectrum somewhere but he probably has no idea.

Then there was the very rare chance I had of visiting the hairdressers. As I got speaking to the stylist she mentioned how refreshing it was to see someone different. Yes, I am afraid my visits are that few and far between she probably mistook me for a brand new customer. She went on to say how she has so many established clients who come the same day for the same style at exactly the same time every few weeks. She even said she could fill in much of her diary before she even left the house. While this is great for business of course, it did make us both think how many of these regular customers are on the autism spectrum somewhere? People who like the same routine every day and need this just to give them security. She went on to say how decorating the salon causes so many of her clients to get upset as they like things to be the same every week. The most interesting thing about this conversation was she never even knew that both my children had autism.

Then there was the visitor to my house. As I offered him a cup of tea he asked if I could put the tea bag in for a certain length of time, use only a particular amount of milk and stir the sugar in a certain direction. Another person I thought about diagnosing!

How many of us clean our house a certain way, eat certain things on certain days (friday is pizza night?), shop in the same stores because you know where things are, or only wear certain clothes because only those ones feel comfortable? An I really saying that these things mean you have autism? No. What I am saying is that we can all show traits. I know lots of people who find social situations uncomfortable. I know adults who still think a dinner must have potatoes and vegetables or they don’t feel it is a dinner. I know others who only clean their house in a certain order, become distressed if the supermarket changes it’s layout, or get very upset when buses change their routes. But you know what…I have yet to meet anyone, other than my son, who eats their slippers!

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You see, in order to get diagnosed both my children had to have enough traits to meet the criteria. And this means they need support in lots of areas. So while the man I met at the coffee shop is still able to go about his business despite have some social awkwardness, my visitor is able to have a full time job but likes their tea made ‘just so’, and many of the clients at the hairdressers like things to be the same way every time, every one of these people is able to live an independent life and function in society.

And that’s the difference with my children. Isaac has no speech at 5. Naomi is so anxious she is unable to talk in social situations even when in pain or upset, they both have continence issues, and Isaac has severe learning difficulties. Isaac will need support throughout his life. Naomi will need support for years to come too. As will many other children and adults with autism. Because to have received a diagnosis they have ‘crossed the line’ from being quirky and different, to having needs in lots of different areas.
Autism is a spectrum. Many people will be able to live independently, have a job, get married, raise children, and even attend university. Others will require life long support. Some need support in social situation or in their learning. Some, like my son, require 1-1 support just to make it through the day. But everyone of them are valuable, precious, special and almost certainly unique.

The coffee shop, the supermarket, and the hairdressers all need people who incorporate visiting them into their daily, weekly, or monthly routine. And of course the slipper manufactures also gain..because, of course, my son is eating his slippers….and his pyjamas too for that matter!

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Autism is

I was asked to write a poem to mark world autism awareness month on April 2nd. There are so many misconceptions about autism and I wanted to show people how vast the spectrum can be. So here is my poem.

Autism is

Unable to speak, or maybe speaking too much
Hugging everyone, or disliking touch
Escaping outside,
Or trying to hide
Excitedly flapping
Inappropriate clapping
Autism varies so much

Won’t wear a coat, or wears one all year round
Fussy eater, or would eat dirt from the ground
Screaming or humming
Annoyingly drumming
Toys in a line
The same way every time
Autism varies so much

Struggling to learn, or has wonderful gifts
Obsessions of numbers, trains, films or lifts
Spinning around
Throws things on the ground
Constantly spitting
Aggressively hitting
Autism varies so much

Alone without friends, or controls every game
Always looks different, always dresses the same
Swinging on doors
Head banging on floors
Freaks at the dryer
Keeps climbing higher
Autism varies so much.

Can’t answer questions, won’t do as their told
In their own world or bossy and bold
Over prepared
Anxious and scared
A spectrum so wide
But they all bring us pride
When autism touches our lives.

And here is what autism looks like in my life:

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What do you mean she has autism?

Sometimes a child’s disability can be so obvious.We know a child confined to a wheelchair requires support, or a child who is blind or wearing hearing aids may need extra patience and help, but what if the child is accademically able and looks like any other child? They don’t flap, they follow instructions and they are in mainstream education. But stratch beneath the surfice and you might just see that they DO have a disability. Often a hidden disability at that: they are on the autistic spectrum.

This is my daughter:

ImageShe is called Naomi and she is almost 5. She is the youngest of twins and her brother has classic autism, neurofibromatosis type 1, seizures, global developmental delay and a visual impairment. So she has a LOT to deal with! Her brothers difficulties are very obvious so her challenges so often get overlooked. She is so clever, so verbal at home and so co-operative, that her disability gets hidden.

What do you mean she has autism?

She doesn’t flap like her brother, she looks at people when they are talking to her, she goes to ‘normal’ nursery, she’s a girl!

Well, yes girls can have autism too! And not everyone with autism flaps, or lines toys up all day or has a learning disability. Millions of people around the world with autism attend mainstream school. My daughter may be one of them next year.

But at almost 5 she is still in nappies. And until two weeks ago she only ever described people by the clothes they were wearing or as being ‘horrible’ or ‘nice’. In the two and a half years she has attended nursery she has never mentioned a child by name: until 10 days ago. She says she has a ‘friend’ but has only ever whispered to him. She plays beside him, not with him. He just happens to be in her group in nursery and likes similar activities to her. So in her mind he is a friend.

This last week we arranged for her to go on a play date to her new friends house. At first we had to stay. She eventually moved from beside me and went to the play room adjacent to where we were sitting. But she could not bring herself to talk to her friend. Her anxiety level escalated to the point she burst into tears. She had absolutley no idea how to socially interact with another child. It does not come naturally to her at all. And the different house and different toys were overwhelming.

With support and a lot of reasurrance she stayed for an hour without us. But she never spoke to anyone. She was no trouble but she didn’t play with her friend at all. Or his little brother and sister. She just found toys and played herself. She set up some toys and looked at them. We hadn’t told her new friend’s mum about Naomi’s challenges as we wanted to give her a chance to be herself and be just like any other 4 year old. But when we went to pick her up even the mum commented on how Naomi seemed very shy and withdrawn.

What do you mean she has autism?

She had no idea. Because the spectrum of autism is so big, because we don’t always think our child’s friends could have such a thing, because awareness isn’t at the level it needs to be yet, because she is a girl!

But yes she has autism.

She struggles to communicate outside of the home environment due to extreme anxiety. She rarely ever speaks outside the house unless mum is with her and even then only to people she is relaxed around. She has selective mutism. She has no confidence to approach people so can not communicate a simple thing like needing help to get her hands washed or her coat buttoned up. She is verbally able and understands almost everything but can not make that step to initate communication herself. She just freezes.

She get anxious and stressed at routines changing. Not quite to the same extent as her brother who could not, for example, have a bath in the morning because he would assume it was bedtime, but more things like changing teacher at nursery or coming home with mum rather than on the nursery bus. She cries if you change her nappy anywhere else other than on the couch she is comfortable with. She only likes to sit in one place in the lounge. She will only eat if sitting at ‘her’ seat at the dinner table. And certain things can only be done by mum, and other things only done by dad. Because that is just how it is. And anything else brings tears and heartache like you have ripped her world apart.

She plays the same games over and over. She will only allow things to be done a certain way. In her train set for example there can only be one train on the track at one time. It must do the entire loop of the track and then the next train goes out. And this gets repeated everytime. She could happily watch the same dvd’s for hours. If she plays with her toy kitchen the exact same meal is cooked 25 times or more in the exact same way. Toys often get set up and then just stared at.

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She had the order of those characters memorised and if one was moved she would burst into tears. In nursery her anxiety is demonstrated by sucking on her tongue continually like in this picture:

ImageHer co-ordination and gross skills are behind too. She can’t kick a ball, or climb or balance on one leg. She isn’t able to dress herself and never wants to run anywhere.

And she has sensory issues like so many others with autism too. Clothes have to be soft and fluffy and she gets very upset if she has tights on as the toes just never ‘feel right’. It is the same with shoes. They are too big, too tight, too small, too hard and just not comfortable. And she will become very aggitated if her pyjamas or top do not cover her arms, no matter how warm the weather is.

She is a very fussy eater. The skins of chicken nuggets, the bread covering of fish fingers, sausages without the skin, a little mashed potato, and the chocolate spread licked off of a sandwhich is her main diet. Chocolate buttons for a treat but never any other type of sweets and only orange juice or milk to drink.

And noise just soars her anxieties to record heights. If there is one thing she hates more than anything it is noise. And children running around. And going barefoot. So soft play is like a form of torture for her. Bouncy castles are another fear. And dogs, especially ones that jump up her or bark. Crowds. Intruding on her space. Scary TV programmes with loud animals and people with swords etc. The list goes on. And her anxieties become higher and higher. So understandably she needs a lot of patience and reasurrance.

And she lives by rules that can not be broken. Her brother must sit behind the driver in the car. Dad has to go out the back door of the house first. Her nursery bus MUST come before her brothers school taxi. Mummy must answer the phone, not daddy. If it is a call centre you must still say ‘hello, who is it?’ even when you know as this is the rules.

But you would never know by looking at my beautiful girl. She is sweet, quiet and no trouble to look after. She will look you in the eye when you talk to her and she is academically able. She is loving, caring, funny and brings me untold joy. She adores her brother and has so much patience with him. She teachers him and cuddles into him and talks to him even when he can’t say anything back. She is his carer, his guide, his support and his best friend.

All while having autism herself.

And that makes her one very special girl indeed!

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What do you mean she has autism?

Autism is just part of her. Have patience and understanding with her but never ever underestimate her! This girl is very precious indeed.

A label won’t define them

Are you one of those shoppers who reads the labels before buying a product? Do you want to know how much salt it contains, whether it has any artificial products in it or even just how long a use by date it has? Or do you just recognise familiar brand labels and put them in your trolley because you know your kids will eat it? Whatever you do the label serves a purpose but without opening the product you still won’t know what it is actually like.

Autism is the same.

‘Autism’ is a label that was given officially to my son on 31st July 2012. It is a label he will have for life. Some people see his label but don’t see him. Others use the label to get a better understanding of his behaviours and tailor his education to suit his needs. Some see his label as just an excuse for anti social behaviour. Still others are frightened by his label. Many do not understand his label and a few see past his label and get to know Isaac. And even fewer are interested enough to read the small print and see the other labels he has such as global developmental delay, severe learning difficulties and neurofibromatosis type 1. 

So I thought it would be good to explain his label (his diagnosis) a little more:

Autism is a complex lifelong condition that affects how a person sees and makes sense of the world. It is a spectrum condition meaning some people are affected mildly and others more severely. There are four main areas it affects including:

social communication (Isaac can not talk or point and struggles to make his needs known. He does not use social gestures like waving or pointing or blowing kisses. He is unaware of others around him much of the time and can not read facial expressions such as knowing when someone is happy or sad. He can hit or bite as he does not know this is not a socially acceptable means of communicating)

social interaction (Isaac does not give eye contact and ignores people when they are talking to him. He has difficulty following simple instructions. If he wants to sit on a seat and someone is already on it he will sit on top of them as if they were not there. He only plays on his own. He does not understand other childrens games. He will break up a train set unaware his sister is playing with it.)

social imagination (Isaac is unable to imagine dangers exist such as moving cars on a road, or falling down a hole. He can not cope with changes to his routine because he can not ‘imagine’ doing anything differently. He can not cope with new places as he has no concept of the wider world around him. New toys stay in the boxes as he can not imagine they could be taken out. He can not imagine what another person might be thinking so can act very inappropriately. He is unable to work out what other children are playing or that a train set toy is representative of a real life train.) 

sensory issues (Isaac processes sensory information differently to others. His play is all on a sensory level and he finds great delight in water play or exploring feathers. He likes to scan things across his eye line. He hates socks and shoes on. He chews and bites everything. He prefers to have no clothes on. He likes deep pressure. He loves the detail and repetitive patterns on things. He adores straight lines.)

 

But this is only how those areas affect Isaac. Everyone with autism is so unique and the areas of difficulty can affect people in all different ways. It is very likely Isaac’s twin sister will also be diagnosed as having autism later this year. But, she can talk fluently, gives good eye contact, is socially aware and academically thriving. Yet they could both have the same label.

Because a label can not define a person. 

You have to open a tin of beans and taste them to know what they are really like. For all a washing powder label says it gets “rid of every stain known” until you try it on your childs ground in blackcurrant juice stains you will never know how good it is.

Please don’t be frightened of my childrens labels or diagnosis. And please never let it define them. They are funny, boisterous, happy, loving children who are unique in every way. Autism helps us understand them but it will never define them.

Here they are playing together with a toy kitchen. Communicating, interacting, using imagination and experiencing all sorts of sensory feedback like noise and colours and movement. Because no label can define them!

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