Lack of imagination in autism is not what you may think


What do you think of when you think of imagination? Do you think of children making up games, people writing fiction stories, or perhaps role play? It is true that all of these, and so much more, require imagination yet imagination is so much more than just forming new ideas and being creative.
Many autistic children (and adults) struggle with a special type of imagination called social imagination.

 

Firstly let me explain what this is NOT:
1. It is NOT the ability to be creative. 

 

In fact many people with autism are highly gifted artists or musicians and have unique and highly talented ways of presenting their ability.

 

If your child is diagnosed with autism it does NOT mean they will not be good at drawing, or be able to express themselves in creative ways.

 

2. It is NOT a lack of ability to play with toys or act out made up scenarios.

 

Children with autism can play at feeding a doll, or play with trains or bring plastic figures to life. Autism may mean their play is more repetitive or scripted from TV programmes but lack of social imagination in itself does not mean your child will never play with a toy phone or dress as a nurse.

 

3. It is NOT going to stop your child writing stories they have made up, telling lies or building unique structures out of lego bricks.
So now we know what social imagination IS’NT let’s talk about what it IS:
Social imagination allows us to understand and predict the behaviour of other people. It also helps us to make sense of abstract ideas, and to imagine situations outside our immediate daily routine.
Lack of social imagination is why so many people with autism struggle with change: they just can not imagine things happening any other way.
Social imagination is the ability to watch others and work out their intentions, their thoughts and interpret what they may do next. This is why children with autism (and adults) find social situations such a challenge at times. They struggle to put themselves inside another persons head and therefore they prefer to watch rather than join in.
Both of my children have autism. On their own they can entertain themselves, make up their own games and even play structured games with rules very well. The difficulty lies when they are expected to play alongside other children because people are very unpredictable and may play in an entirely different way to what my child is used to. That ability to adapt and understand others is known as lack of social imagination.
Lack of social imagination means they can not foresee what might happen next. This is why those with autism can not see danger: they simply can not imagine anything happening that has never happened before. They have never drowned before so how could that happen? They have never been knocked over by a car so how could that happen? Even if they have had some danger happen like an injury that only happened in one place in one particular chain of events so to them it will not ever happen again. This makes lack of social imagining dangerous.
Lack of social imagining means they struggle to see the future. They can not imagine ever moving to a different school or a new house or having a different carer. They can not imagine their bedroom painted a different colour or someone else moving into the family. This is why it is so important to help children with autism (and adults) when anything changes.
Lack of social imagining means they need support to face new situations. Going to new places, meeting new people, even road diversions all require our brain to be adaptable and without the ability to ‘imagine’ that everything will work itself out you can see why so many people with autism will struggle.
Lack of social imagination  is also why my daughter has no concept when others are bored listening to her talk on and on about her latest fixation. Not only can she not imagine that everyone else would love Thomas Tank Engine as much as she does but she also can not imagine that you would want to do something else if she doesn’t. She doesn’t want to cook dinner so why should I? For my non verbal son he sees no reason why he can not go and watch lifts at 3am since he can not imagine that the rest of the world is sleeping.
Lack of social imagination is why my daughter is so bound up with anxiety. It is why she has so many difficulties trying new foods (unable to imagine if they will taste good or not) and why she has significant challenges socially.
Yet she makes a great pirate looking out to sea in the playground as you can see from the photo. She had great fun telling me about rescuing people from the nearby houses and looking for treasure under the swings. She has plenty imagination it’s just social imagining she struggles with. People may think they are the same but they are not.

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My children do SUFFER from autism and I think we need to understand that.

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I have just outraged and angered an entire community by saying that. Before you pin me to your dart board and vilify me on social media please spare me a few minutes of your time to hear me out first.

I adore my children. They are my heartbeat, my reason for being, my everything. I think they are the most beautiful human beings ever created, they are talented, hilarious, kind, amazing and every single day they make me proud.

They also both suffer from autism. I use ‘suffer’ deliberately.

Dictionary.com defines ‘suffer’ as:

verb (used without object)
1.to undergo or feel pain or distress:
2.to sustain injury, disadvantage, or loss:
3.to undergo a penalty, as of death:
4.to endure pain, disability, death, etc.,patiently or willingly

So sticking with the dictionary meaning let’s go through this. Not all apply to autism but here are the ones that do for my children:

Number one to undergo pain or distress. My children both undergo this due to their autism but in very different ways. My daughter feels very real pain when she experiences sensory overload and certain smells make her physically sick. Loud noise hurts her ears and someone walking past her in school is like them sticking needles in her. Her pain is real. Not understanding social situations distresses her to the point she has panic attacks and cries. My non verbal son experiences distress and pain daily as a direct result of his autism. The simplest of things changing or even a door open anywhere in our full street and he will self harm and scream for hours. He just can not cope and has no means to communicate why. That to me is pain and distress not just for him but for us too.

Number two: to sustain injury, disadvantage or loss.
Loss of ability to speak both consistently for my non verbal son and in certain situation for my daughter due to extreme anxiety; that is loss and disadvantage. To be excluded from social events because you are so limited in your interests or find social situations so complex and difficult is loss and disadvantage. To have the level of learning difficulty my son has where at 8 he can not write one letter or number nor can he read is a huge disadvantage in life. To still be wearing nappies at 8 is a disadvantage and loss. To not be able to dress yourself is disadvantage and loss. So yes they suffer from autism according to this definition too.

Number four: to endure pain or disability.
I see autism as a very real disability for both my children. They are unable to do what others in society take for granted. My son will require 24 hour care all of his life. My daughter has mental health difficulties which will require ongoing monitoring for most of her life. Socially they will both require support too. Their autism is life long and they require a much higher level of care than other children their age do. Do they need to ‘endure’? Yes I believe they do. A school day is huge for them both to cope with. The demands placed on them, the sensory difficulties faced and the continuous transition from outside to inside and different rooms puts massive stress on them both and it takes huge strength for them to get through every day. Autism causes them mental and physical pain at times in ways many of us don’t quite understand.

My children live in a world that is different to them and confusing. Their communication difficulties and social struggles make everyday a challenge. They struggle, they endure and they face difficulties. They are suffering.

It is apparently not politically correct to say anyone suffers from anything. The negative connotations associated with the word suffer make some people very angry. I am not dismissing that at all. Yet I am left with a big concern: If we continue to only allow people to use positive and politely correct language when referring to autism like it is ‘just another way to see the world‘, or ‘it is a gift‘, or ‘it is a difference to embrace‘ then are we doing an injustice to those who are in fact struggling daily, in pain mentally or physically as a result of their autism, and suffering as a result of inflexibility, social confusion and misunderstood repetitive movements like flapping?

My children need support. They need people to help them through their struggles. If that means I come across as negative saying they suffer from autism then so be it. Sometimes I have no choice but to break the taboo in order to get the support my children desperately need.

If by stating they are suffering it causes people to want to help, or makes them think about how they treat them then I feel it is justified.

I tell my children everyday how wonderful they are, how precious they are, how loved they are. I celebrate their achievements and accept them but I refuse to sugar coat their struggles and I want to honour them both for the way they cope in all the ways they truly suffer as a result of their autism.

They suffer from autism and I think other people need to understand that.

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How Google Street Map Has Given One Non Verbal Autistic Boy a voice

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If there is one thing my son Isaac has taught me in the last 8 years it is this:

 
Communication is much more than words.

 

Isaac has severe autism. He has no spoken language. He has global delay, significant learning difficulties and NF1. He struggles with lots of things in life ,but yet there is one thing he excels at and has done for a few years now: he has taught himself to communicate via google street map!

It is a different way of communicating, but for him it works much better than speech or any traditional communication app.

Wherever I take Isaac, wether it is somewhere he is familiar with, or hundreds of miles away to a place he has never been before, he has a special talent of retracing the exact route once home using just google street map and his incredible memory.
In the summer of 2014 when he was just six year old we went on holiday to a cottage 120 miles from home yet a week later he retraced the exact route we travelled including stopping at the very same service station we took a comfort break at!

I was amazed that a child who has no understanding of numbers or letters and barely turned when his name was called could hold such an incredible talent. I was sure it was a one off.

img_6259He attends a school for children with complex needs and is transported there in transport alone for his own safety due to challenging behaviour and seizures. His school is 14 miles from home yet he takes himself there by memory via google street map every afternoon once home and sitting in ‘his’ chair. I put this ability down to the fact he does the same journey daily. I wondered if he had the location stored.

One day I watched him.

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What I witnessed gave me an insight into part of his world I can never be a part of and which he could never tell me about. Watching him use google street map gave me peace of mind as he showed me step by step the route his taxi goes and even where the car parks to get him out…in fact he even took me to the door of the building he goes into! All without speaking a single word

He uses google street map for his every communication need now.

If he is hungry he goes onto the street map and travels from his home address to a restaurant nearby and brings his iPad to me to show me.
If he wants to go out he uses google street map to show me where he wants to go, from the church he goes to every week, to the train station, and the local park. He takes himself to his grans house and to shopping centres to tell me he wants to go and watch lifts.
He has discovered he can enter a local hotel using google street map and this has opened up new unique ways for him to communicate too.
He tells me when he requires his continence products changed by taking himself to the hotel, going inside and finding the toilets!
He goes into rooms in the hotels and finds an ensuite to communicate he wants a bath at night. When ready for bed he moves around the rooms until he finds a bed and points to it.
He finds my car in the driveway to ask to go in the car.
He finds a clothes shop in the high street to ask me to get him dressed.
When he was highly distressed one day and I could not stop him screaming I put on google street map and he moved around until he found a house with a door open to show me that there was a door open somewhere he could see and this was what was causing his distress! I was in awe of his ability to find such an ingenious way to communicate.

Two weeks ago though he shocked me once again. He was more lethargic than usual and quiet (he may not speak but he makes a lot of noise!). He came and sat beside me and used his skill on google street map to take himself to the doctors surgery! For the first time ever he was able to communicate that he was feeling unwell! This was incredible. I cried. It was nothing serious thankfully but to be able to say he communicated he was not feeling good to a doctor was amazing.

Isaac is not a genius. He can not write his own name, dress himself, read or write or use cutlery. He requires round the clock care. He can not speak one word. He is severely autistic yet he has found a way to connect with others that is as unique and special as he is.

Google street map has helped millions find their way in life but none more so than one non verbal autistic little boy named Isaac.

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Why being ‘autism friendly’ is much more than a gimmick

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Did you know that last week Britain’s second busiest airport (London Gatwick) became the first airport to be ‘autism friendly’?
Where you aware that last weekend the international toy retailer toys r us held an autism friendly event throughout the uk?

It seems the whole concept of being autism friendly has taken wings and grown and it is now common place to hear of autism friendly cinema screenings, autism friendly museums and libraries, autism friendly times in trampoline parks and soft plays, and even autism friendly Santa’s grottos!

A quick glance online and I even found autism friendly cruises!

But what is this autism friendly stuff all about and is it just a marketing gimmick?

According to Wikipedia Autism friendly means “being aware of social engagement and environmental factors affecting people on the autism spectrum , with modifications to communication methods and physical space to better suit individual’s unique and special needs.”

In practice for most places this means what the retailer Asda advertised recently as a ‘quiet hour’ where all unnecessary noice is reduced to avoid too much sensory stimuli. Autism friendly cinema showings for example have dimmed lights rather than complete darkness and a more relaxed atmosphere.

However there is much more to this than just turning the tannoy down! The National Autistic Society now has an award for being autism friendly but to get this prestigious award retailers and towns or businesses must do much more than just reducing noise or creating a more relaxed atmosphere. Criteria for their award includes having autism friendly customer information, having staff and volunteers who have an understanding of autism, making the physical environment more autism friendly, having the customer experience autism friendly and promoting understanding of autism. For anyone to go to that level is far more than just a marketing gimmick; it is costly, time consuming and takes a lot of motivation.

So why do it? And why single out autism?

What if I told you there are around 700,000 people in the UK living with autism – that’s more than 1 in 100? If you include their families, autism touches the lives of 2.8 million people every day. 79% of autistic people and 70% of families said they felt socially isolated.50% of autistic people and families sometimes don’t go out because of concern about people’s reaction to their autism. Autism friendly events have a potential to attract a huge market for businesses and towns as well as showing tolerance and understanding that reaches many more besides.

What about other disabilities?

This is the beauty of autism friendly. Autism is a huge spectrum involving difficulties to varying degrees with communication, social interaction and social imagination. Some will have learning difficulties or mental health struggles. Autism friendly events are there for everyone regardless of diagnosis or difficulty. They are as accessible to the Down syndrome community or those with genetic disorders. They are accessible to those with physical difficulties or challenging behaviour. No-one will be asked for diagnosis or membership to access any autism friendly event of any kind and therefore what is helpful for those with autism is as open and accepting for anyone facing any difficulty. We are all in this together.

img_4175So why do I care? I recently took my severely  autistic son with me shopping. He made noises, flapped his hands, laughed loudly and generally had a wonderful time watching a lift door open and close again. He can not speak. He has the mental understanding of a baby despite being 8. He is still in nappies. As the lift door opened a stranger looked at my son in disgust and said “I have come here to do my shopping, not see the likes of THAT!” I cried. It took me a long time to feel I could ever take him out again. I am not alone.

When Victoria Holdsworth approached toys r us in 2014 to ask if they would consider doing an autism event to help her son Joe she had no idea how much the entire autism friendly concept would take off. We owe her so much.

Now there are entire towns looking to become autism friendly. Liverpool has a huge campaign and councillor Mandy Garford from Dartford has a determination to make Dartford autism friendly too.

This is much more than a gimmick. This is an entire movement expanding across the UK that says to autism parents like me ‘we see you and we care.’

Do you care too? Please help by sharing this blog, supporting autism awareness and thinking about how YOUR town, business or place of work could also be autism friendly too.

Maybe one day less people will then call my son a ‘that’.

Being autism friendly is much more than a gimmick..it is a monumental change that makes the world much more accepting to children like mine.

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Autism: should it affect medical treatment or not?

Everyone deserves the best medical treatment possible at all times. No life is worth less than another. What happens though when someone can not understand treatment, or convey pain, or communicate…should they be treated differently?

Here is my story.

My son is seven years old with a diagnosis of non verbal severe autism, learning difficulties and Neurofibromatosis type 1.
Let’s stop there and make this much more personal. Here is Isaac, a cheeky, lift loving, teddy chewing, energetic, loving seven year old.

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Isaac has had some major medical tests recently to help find out more about what is going on in his body and mind given his medical condition and difficulties communicating.

He had an EEG. This came back abnormal.

He had an MRI under general anaesthetic. Yesterday we had the results. He has microphthalmia is his right eye which means he has no vision at all in that eye. His left eye has an optic glioma, a type of brain tumour.

As I said Isaac has severe autism. Should this affect how he is treated for his optic glioma?

We have two options at present.

The first is watch and wait. The tumour may never grow and his vision may remain stable. No-one really knows.

This option relies on regular eye tests, regular MRi’s and the patient communicating any changes to his vision or health.

This is where autism poses a problem. Isaac has yet to be able to carry out a conventional eye test. He shows no interest in picture cards, can not identify numbers or letter consistently and has no means of communication or even understanding any changes to his vision. MRI scans involve general anaesthetic and therefore come with risks. The MRI can identify any tumour growth but has no way of knowing any symptoms the patient may be having.

Should my sons autism affect wether we take the risk of watch and wait?

The second option is chemotherapy. That comes with huge risks and is highly invasive. Isaac would have no understanding of the medical treatment and struggle with any changes. We would once again have no knowledge of how it would be affecting him as he has no language. This could make managing the treatment very problematic and challenging.

Do we risk chemotherapy on a child with such limitted understanding and awareness?

Before any of this happened to me I would have argued that no child should be treated any differently medically just because they have autism. The fact is you HAVE to treat them differently.

Whatever decision is made by my sons medical team in the next days and months will all come down to his autism as much as his medical challenges.

I trust my sons team. He has some very skilled medics on board but there will also be communication specialists too. Why? Because his autism DOES affect his medical treatment in a very big way.

I stand by what I said at the start. EVERYONE deserves the best medical treatment available at all times. It is just, in my sons case, autism has a major part to play in what the best medical treatment is. That is a fact we can not ignore.

The decision is somewhat out is my hands. Isaac has no say in it either.

Autism affects so much about my child and in his case it affects his medical treatment too.

I am so grateful for doctors who understanding this.

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The less they get, the happier they are

imageIt is the day after Christmas Day and if social media were to be believed my children have been pretty hard done by. Except they haven’t.

By society’s standard in the country I live in we are considered to have little income. But in actual fact we are very rich indeed.

This Christmas my children received less than many others. Much of what they had yesterday was second hard or given by family. Yet this truly has been our best Christmas ever.

Both of my beautiful twins have a developmental neurological condition called autism. Despite being seven year old my son is unable to speak and has significant communication difficulties. He can not ask or show me what he would like as a gift at any time of year and only plays on rare occasions with toys suitable for infants. My daughter has zero concept of peer pressure or current trends and instead likes to re-enact things she has seen on TV or a DVD. She likes simple, small toys that she can line up.

So I decided this year to give them the Christmas THEY wanted. I was brought up as one of four children with extended family of uncles, aunts and grandparents and a minimum of twelve people at the table for Christmas dinner every year. I loved it! My children would hate this!

So we socialised less. We had less people here; in fact we had no-one around on Christmas Day at all and we all stayed home.

We ate less. The kids had no selection boxes or sweets at all and instead had some fish bites and chips for lunch and sausages and mash with baked beans for dinner later on. We never even had pudding. Not because we could not afford it but because no-one was bothered.

We were at peace. We were content. The less we got and did, the happier we all were.

imageIsaac loved a simple book. And a toy toaster that only just cost marginally more then the wrapping paper I used to wrap it in! A family member bought him a plastic jar of magnetic letters. It brought him huge joy and despite being described by professionals as ‘own agenda’ and ‘in his own world’, he gave me eye contact and smiles and vocalised to get me to tell him the letters and numbers as he showed me them. An inexpensive item bringing priceless moments of love, communication, connection and education.

imageNaomi had a new DVD and some small characters. But one of the things she loved most was a small game of bowling which she used her new characters to play with time and time again. Turn taking, fine motor control, imagination and maths skills all coming into play in a toy that cost just a few pounds. And together we spent some beautiful time together playing a game of dominoes that cost half the price of a roll of sticky tape bought to wrap the gifts in! Gran bought her a tub of Lego and she helped me make a pencil. That pencil became a magic pencil that wrote letters and passwords all over the house.

A few days before Christmas I came back from a meeting at my sons school to a note through my door. All it said was there was a parcel in the bin for me. When I went to retrieve it I discovered two bin bags of wrapped gifts for my children.image I have no idea who did this but it was such a beautiful act. One box was full of second hand transformer type toys. My son has fiddled with these and my daughter is fascinated by the moving parts. Another gift was a craft set my daughter loves and another was some children’s make up which Naomi says will make her even more beautiful. (I don’t believe that is possible!)

It has been a very simple Christmas, by choice rather than need. The children got less but in doing so we ALL got more. More in the way of quality time with them, more peace, more calmness and more appreciation of the things we so often take for granted. For the first time they were not overwhelmed or pressured and neither were we.

I love Christmas; I always have done. But this year my children taught me the true meaning of it all. Baby Jesus was born in the most humble and basic of circumstances and in our humble Christmas this year we found a closeness and a magic we have not had before. My children showed me that the less they get, the happier they are.

Well apart from love that is! You can never ever have too much love!

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When someone says, “It’s only autism”

imageTwice now I have heard the paediatrician confirm ‘Your child has autism’.

Have you any idea what that feels like?

Hundreds of times I have found myself telling someone else that one or both my children have autism.

The responses are interesting. They range from shock to sympathy, from confusion to comfort, from understanding to utter ignorance.

A few times people have told me it isn’t that bad, it is ‘only autism’.

Before I go any further I need to tell you I am so grateful for my children. I adore them. My son attends a school for children with severe and complex needs and he mixes every day with children who have life limiting and severe medical and developmental needs. I am involved with a charity that supports children with Neurofibromatosis and know personally of children with brain tumours, undergoing intensive chemotherapy and struggling with pain. Every time I take my children for hospital appointments I count myself blessed. I know there are thousands, even millions of families in the world worse off than mine.

The biggest issue my children both face is autism. But it isn’t ‘only autism’.

When you say ‘it’s only autism’ it can sound like it is something minor, insignificant, that it has little to no effect on them. That could not be further from the truth. According to the National Autistic Society autism is ‘a life long developmental disability…’ In other words my children with autism will one day be adults with autism. They will always have it. When you say ‘only’ I think of a cold or a sickness bug that is minor, time limited and will leave no major problems. My children’s autism is none of those.

Autism affects how they speak. One of my children has no speech at all aged 7. He may or may not be able to speak as an adult. What is ‘only’ about that? I find that very significant and life limiting for him and us. Many children and adults with autism have echolalia, selective mutism or difficulties being understood. These are all significant speech and language issues that need intensive support.

Autism affects what they wear. They both have huge sensory issues and rigidness. My daughter refuses to remove her school fleece even on the warmest of days and my son went two years only wearing his school jumper every single day. Some children with autism strip off even in public, others are unable to wear shoes and many have issues with everyday items like socks. It may seem trivial in comparison with what others struggle with but dealing with this daily is exhausting and debilitating for so many.

Autism affects what they eat. I have one child with autism who has no concept of edible and non edible at aged 7. He would eat plastic as easily as mashed potato! I have another who refuses food due to severe anxiety. Millions of children with autism have limited diets or severe eating issues. The stress parents face at every mealtime is anything but ‘only’.

Autism affects their play and social skills. My son is locked in his own world. He has little awareness of other children and with no language he is unable to really interact with others. My daughter has no natural desire to talk to other children other than one friend and last year preferred talking to flowers to talking to children. She likes rules and sadly people and social events don’t always comply with rules and she gets confused. My children are vulnerable and always will be. That is scary.

Autism affects how they learn. My son has significant learning disabilities. This is not uncommon with autism. My daughter learns best from visual stimulation which is not always how things are taught in mainstream school. They need patience, understanding, repetition and consistency. So many things take longer. They won’t ‘grow out it’, ‘be fine’ or ‘snap out it’. My son won’t suddenly learn to read or write or talk. It takes time and intervention and therapy. None of that is ‘only’.

I could go on and say how it affects the way they understand and think. It affects how they interpret emotions. It affects their sleep and self esteem. It affects their mental health. It affects their ability to face new situations and cope with change.

And it affects me as their mum.

Yes there is so many things worse than autism. I would never ever argue with that. But autism is still a serious condition for so many, my children included.

It may be ‘only autism’ to you, but it is far more to me, my children and thousands of others too.