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.

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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She is NOT a ‘spoil brat’ she is a child with serious food aversions!

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Have you ever joined any food groups on social media or watched food programmes on television? I have to say I usually avoid them as someone who generally has little time to watch TV and who struggles to cook.

However I was chatting to a friend today who had been watching TV recently and heard a famous chef on prime time TV talking about ‘fussy eaters’ and saying that it was all down to the parents ‘giving in.’ She felt she had to say to me as she knows the struggles I face daily with my daughter.

Just minutes later a fellow blogger posted how she was outraged having read on a huge Facebook group relating to food that a professional was advocating ‘starving’ fussy children until they gave in and ate!

I should be used to this by now but it still hurts. People feel so open about judging my parenting and my cooking and even my mental health because I happen to have a child who has serious food aversions and struggles to eat.

It is a daily battle for me to remind myself I am not to blame!

IMG_1851Every parent wants to feed their child. It is fundamental to their welfare and brings us so much satisfaction to know they are happy and nourished. My daughter was a wonderful breast feeder and despite having low birth weight, she was settled, happy and growing on breast milk. Then I began weaning and suddenly everything changed! From the very start she refused solid food and eight years later we are still struggling.

We have seen paediatricians, dieticians, health visitors, mental health nurses and psychologists and we are still struggling.

If I put food in front of her and tell her ‘it is this or nothing’ she would starve.

If food touches she has a huge meltdown and stops talking and interacting. It traumatises her beyond belief.

Every single day is a struggle. People say it is my fault, like that helps. People say she is controlling us, like that will make her eat! The worst ones are those who say she is a ‘spoilt brat’ when in fact she is a child with extreme anxiety and food aversion! It is heartbreaking.IMG_1850

We have a few foods she will eat and those are saving us from the added trauma of a feeding tube (a trauma that could result in no food or drink ever going in her mouth again). She has only two things she will drink. Her weight is a serious worry as is her health as she walks a fine balance between being ‘well’ and ‘we may need to intervene’.

We have days she will eat and days she won’t.

Her food aversion and eating issues are complex and related to many things and not just ‘fussy eating’.

If I am to blame then why does her twin brother have no issue with food and in fact will eat anything out in front of him?

There is no history of eating disorders in my family.

My children are not fed on junk.

My daughter is not a spoilt brat and neither will I allow her to starve. That is known as abuse!

Food aversion and eating disorders are REAL. TV personalities should know better. Professionals should know better. Ignorance is rife about this matter and it is destroying children and families everywhere.

Please stop judging!

My child is NOT a spoilt brat! She is caring, loving, gentle, beautiful and kind. She also has food aversions and an eating disorder.

Unless you live with this it is hard to understand. Ignorance from professionals and TV personalities is not helping.

Food aversions and eating disorders are no laughing matter. How would you feel if it was your child or someone you loved struggling?

 

A version of this blog first appeared here

 

What are schools really saying when they reward 100% attendance? 

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I sat at the back of the hall at my daughter’s school end of year assembly smiling as the choir sang, the oldest class performed and finally the awards were given out. As a parent it is such a proud moment to hear your child’s name called out and their achievements recognised. Awards for academic achievement, endeavour, sports, star of the year and citizenship had me cheering, smiling and clapping. Then one final reward which made me so angry I actually wanted to get up and walk out: 100% attendance! 

 
What? You mean they actually reward children with a certificate for not missing a single day at school? Yes it is actually common place and, in my opinion, absolutely awful!

 
To put this in context the average attendance in my local authority this year is over 95% so hardly a huge issue. I do understand some children are absent for reasons that are unacceptable but is this really something to penalise the child for or is this not something that would be better dealt with via education of the parents or guardians?

 
So what are schools really saying when they reward 100% attendance?

 
1. They are telling children ‘we want you here even if you a sick’. 

Surely this goes against all health and safety and human rights of the child and others in the school? This is telling children that coming to school comes before their own physical and mental well being which is appalling. The entire point of education is that the welfare of the child should be central. By rewarding attendance you encourage children to come even when contagious to other staff and children or when they are in no fit state to learn. Stop and think…if an employer put attendance of higher value than human rights would we not be calling our union and going to the press? Then why do we praise schools when they do this?

 
2. They are telling children ‘school comes before your own family.’

Yes children are put down as ‘unauthorised absence’ when they are off due to a family funeral or when there is a family crisis. A few years ago a good friend of mine lost her entire home and possessions in an awful house fire and as a result of being homeless and having no access to uniform or a roof over their head the children lost out on attendance awards! That, to me, is saying to children that even if you have no home, no clothing and no bed to sleep in you should still come to school. In other words, we just don’t care about your home life as long as you attend, even if you are in no state to learn! 

My own family had a sudden death in the family this year and as the immediate relatives it was down to us to make all the funeral arrangements and deal with the estate. The problem was the relative (my children’s gran) lived over 400 miles away. Did school really expect me to say to the undertaker ‘I’m so sorry but as this is term time could you keep the body until the next school holiday?’ Life does not run to school timetables and children are part of wider families where death, hospital stays, separation and unexpected events happen. Do we actually want to live in a society that places school attendance above the welfare of our own children?

 
3. They are telling children ‘turning up is just as important as learning’ 

That sounds good doesn’t it. They will claim this is an award ‘that all can achieve’ wether they are academic or even have additional support needs. You don’t need to be sporty or overly confident or even the ‘teacher’s pet’ to get attendance so what’s the problem? The issue here is that children come to school not simply to have their name ticked on a register as having attended but to learn and develop. We are supposed to be preparing children for the future but what employer would want someone turning up to work doing nothing? If a child has managed to keep up with the pace of learning and tried their best all year is this not of much more long term value than just being there?

 
I get that schools want children there. I understand they are accountable to the local authority for attendance. I understand they want to be seen as inclusive and have awards for children that struggle academically or do not overtly shine out in any subject, but why pick attendance?

 
Make school a safe haven, a place of significance and fun where children want to be. Educate parents on the importance of helping your child to attend as much as possible. But please, do NOT reward children for coming in when unwell, for putting school above family or for just merely having their name ticked on a register. 

 
I thought we were all about having the child at the centre or getting it right for every child or whatever else they wish to call it?

 
Oh and while I am here: not one of the staff members in her school this year would have gained an attendance certificate so why should the children not be treated the same? 

What Happened When A Child Refused To Have My Autistic Daughter In Her Team


It’s two days before sports day at my daughter’s school and gym lessons are all about practicing for hurdles, sprinting and egg and spoon races. The children are excited, eager and raring to go…all except one child who finds any sport a challenge.

She is small, quiet, slow at running and finds balance and jumping difficult. She has fallen too often and takes longer to master even the most basic of physical skills Everyone in her class knows this but today it seems even more obvious.

The class is divided into teams to practice the skills. Although no mention of competing, timing or winning is even said the children somehow know this is practice for the big day when trophies and awards are given out. The teacher numbers the children and sends them to their respective areas.

And then it happens.

Miss can I swap groups?”

“Does she have to be in our team?”

“It’s not fair we always have her!”

“That’s it! I’m not taking part if she’s on my team!”
And at that one child walked off, refusing to take part in the lesson simply because my autistic daughter was on her team. 

My 8 year old won’t tell me how she felt about that but I can image. As her mum I want to cry. My daughter may struggle with social awareness at times but even she totally understood she was not welcome or wanted and she knew exactly why. 

She knows she is different from her peers. She knows her physical skills are delayed and that she often needs adult help to participate, yet every week she tries her best. But how much can one child take?
What would you do if you knew no-one in your class wanted you in their team? 

Naomi ignored them. She carried on as if nothing had happened while the other child sat and watched. She needed assistance at the hurdles and at anything related to using balls but then as the teams moved around activities the teacher noticed something very special.
When Naomi’s team came to sprinting they were a child short on her team. The child who finds running hard took it upon herself to not only run for herself but also on behalf of the very child who had refused to join in because she did not wish to be on a team with my autistic daughter! The teacher cheered her as she pushed herself to not only run twice for her team but also do several other tasks twice over because her team was a child down.

There was no race to win today. There were no prizes. The actual sports day is not for another two days yet. However, when I collected my daughter today her teacher called me back to speak to me.

She never told me about the child who refused to join in because my daughter was on her team. Instead she told me how proud she was of my 8 year old who excelled herself in the sports class today on so many levels.

It was my daughter who told me what happened with the other children and how one girl refused to join in because Naomi was on her team.
How silly was that mum! She thought she had no chance of winning because I am slower than others but you will never win anything unless you try.”

I don’t need to be upset about the fact my daughter was bullied today because she is different. I am not even angry the child was allowed to sit out just because she felt so aggrieved at having to do sports in the same team as a child who struggles.

My daughter proved today she is much greater at sports than anyone realised. She showed sportsmanship, team work and resilience beyond her years. What she lacks in physical ability she made up for in strength of character.

Too often we look down on others because they seem weaker or less able.

At bedtime tonight my daughter summed up her day like this:

“It was good mum! I tried my best and did extra when I could to help. That makes me a winner…right?”

Yes it does!

My child became a winner…that’s what happened the day a child in her class refused to have my autistic daughter in her team! 

Sometimes the hardest lessons in life show us what we are truly made of.

I hope the child who refused to join in today has learnt from my daughter. I know I have! 

The crisis of carers paid just £1.79 an hour.


I went to renew my car insurance recently only to discover my occupation is ‘unlisted’. I was forced to telephone them and ask what I should list myself as. They decided I was either ‘unemployed’ or ‘stay at home parent’. I am neither of these! I am a full time carer but no-one seems to know we even exist!

 
I gave up a managerial position to care for my disabled son. I have a degree education and had a good career in sales. I was a home owner, had a fairly new car and I was valued. Then I had a disabled child and now all I am deemed worthy of is an hourly rate of £1.79. In reality I get much much less than that!

 
I feel utterly disgusted at how unpaid carers are treated in this country. Are people aware that carers allowance is only given out to those caring for someone 35 hours a week or more and that it is a weekly amount of just £62.70? I wish I was only working 35 hours caring but assuming this was all I worked I would still only be paid a measly £1.79 an hour! Would you work for that amount?

 
Would you work permanent night shifts dealing with someone with challenging behaviour, who is completely incontinent and has night seizures, and still have to work 12 hour days as well? Would your union not have something to say about this? What about if you had no breaks and were often attacked at work? What about if you were denied any holidays or even time off for ill health? What if sick pay was non existent? What if all your employment rights were taken away from you?

 
When I became a full time carer it appears I lost all my human rights.

 

 

I have no union to protect me and no manager to put my case to. I went from being a someone to a no-one the second I became a carer.

 
I am considered nothing by society who view me as a ‘benefit scrounger’, ‘lazy’ or nothing more than ‘unemployed’. People scoff at my ‘profession’ like it is a joke.

 
Let me tell you my job is no joke!

 
I deal with life and death with a child who has severe complex needs. I make decisions on his welfare and health needs daily that should really be made by neurologists, doctors and oncologists. I co-ordinate his care without a secretary and attend meetings without back up. I sign forms as his ‘representative’ without legal support because no-one else is bothered what happens anyway.

 
If my son should die and I updated my CV employers would simply see me as having taken a ‘career break’ or ‘time out for family’ rather than viewing my current situation as a serious job. Why? Because caring has no prestige. It is seen as worthless, less than, of no value and not beneficial to any career. Even if I wished to use my experience to take up full-time employment in the care sector my current work is of no use as I have no reference or company or courses I have completed.

 
Even the NHS view me as simply the one who pushes the wheelchair or who hands his appointment card over. When my son reaches a certain age it will be expected he will attend appointments with me waiting outside despite the fact he is completely non verbal and unable to understand what is required of him. I will have to go through a host of hoops and bureaucracy to prove as his carer I even have a right to be with him, yet anyone can have an advocate or friend with them and they are fine?

 
I gave birth to a disabled child. I gave up my career to be his carer. Apparently that means my career has hit a brick wall and I have waved goodbye to my self respect and self worth. My job title no longer even appears on a drop down list and my hourly worth is now reduced to just £1.79 an hour.

 
This is the crisis of carers in Great Britain right now.

 

 

Does anyone realise this is going on? 


The difficulties that get overlooked when your autistic child is verbal


I am blessed with a daughter who has a large vocabulary and clear dictation. She can read fluently and make up complex sentences. She can remember accurate facts about things and repeat these readily. She can make choices, recall events and express her opinion.

As a result of all of the above it is assumed (wrongly) that her autism is mild, has limited impact on her life and something to be of little concern about.

People are too quick to assume if a child is verbal that everything is fine. 

Let me assure you that just because an autistic child can speak it does not mean their autism is mild.

Having speech does not mean a child necessarily understands what you are talking about.

Having speech does not mean there are no learning difficulties.

Being able to talk does not mean a child can effectively communicate.

Most of my autistic daughter’s speech is something called ‘complex echolalia’. She remembers sentences and phrases from things she has read or heard and uses them to allude people into thinking she is coping socially. This is a common coping mechanism in girls with autism. They become adept at hiding their difficulties by quoting from others be it from movies, books or friends. It took a highly skilled speech therapist to diagnose this in my child but once pointed out it was so obvious. When she was younger we could pick out phrases from Thomas Tank engine, or Peppa Pig or sentences from well read children’s books I would read to her at bedtime. Her vocabulary was not being used independently but more ‘cut and pasted’ from one situation to another. This is much more common with autism than people realise.

Your child may appear to be talking but is it spontaneous language or an echo of something they have heard many times before but do not actually understand?

People assume because my daughter can talk that she is socialising. ‘She chats to friends in the playground’ is a common phrase used by schools to assume a child with autism is socialising well. What in fact she is doing is listing every  ‘shopkin‘ she owns in alphabetic order or inappropriately telling another child they smell awful today! It is talking and it is to another child but it is not social reciprocal play and she is not making friends!

Many also assume because my child can speak that she can not possibly be anxious! That is a myth. Anxiety can manifest in so many ways and if asked a direct question my daughter will attempt to answer even if her anxiety is making her feel physically sick. Anxiety in verbal people with autism can actually make them say things that are considered rude or hurtful or even cause them to repeat the same phrase or question over and over. These are ‘coping mechanisms’ to help them cope with the extra stress of certain situations.

It is assumed because she is verbal that she understands emotional and intention. That is like saying because a baby can walk they can do ballet or play football! It is dangerous and worrying that even teachers assume because a child has the physical ability to speak that they are able to cognitively answer complex emotional questions like ‘why did Billy hit you? Or ‘how do you think I feel about you saying that?’ A verbal child with autism may still struggle with emotions and verbalising events that have happened. They still struggle with seeing things from other perspective or being able to break down facial expressions. We need to remember they still have autism even if they can speak and not make assumptions based solely on the fact we appear to understand what they tell us.

My daughter can speak but don’t expect her to tell you if she is in pain or where. Don’t expect her to understand metaphors or euphemisms or jokes. She can not grasp double meanings and understands language completely literally. ‘The sky looks heavy today’ to her means it is about to fall down! Don’t stop her half way through her lists or even her sentence as you interrupt her echolalia and therefore her brain’s ability to decipher the world around her.

I am eternally grateful she can speak. I have a son who is entirely non verbal at 8 and I know the pain of never hearing your child talk.

However, I also know the pain of seeing my child’s difficulties ignored just because she is verbal.

We must look at autistic children individually. We need to look past the words they speak and see beyond the sounds we are able to understand. Under the surface of speech lies so many other difficulties that require ongoing support. 

If you know someone with autism who can speak never make the assumption their autism must be mild. There is so much more to autism than just being able to talk. Words hide much more than we ever think.