A Day In Mainstream School For My Autistic Daughter

I am so grateful that my daughter can talk and that she shares freely with me her worries and stresses of school. This day in the life has been written with her full consent and approval to help others see how challenging mainstream can be for some children with autism and how they can perhaps ‘hold it together’ all day but explode at home. 
img_2266Morning preparation 

I wake up and come downstairs and try not to think about school too much. I get my iPad or toys and set them up just how I like it. I know I need to get dressed and eat but until things are ‘right’ I can’t think about those things. I need to do one thing at a time so please leave me alone. Let me do it my way. Constantly asking me questions is so stressful as is nagging me about time. By the time we need to leave I am already stressed and anxious.

 
In the playground

I am scanning. This is so hard to see who I need to see when everyone is dressed the same and moving around. The noise, the unpredictable movements, the bags on the ground…that’s a lot to take in for me. I only want to find my best friend and the longer it takes to find her the more I get worried. What if she is off sick? What if she has an appointment today?

IMG_2395The bell

Bells panic me. They mean I have to move somewhere quickly and I sometimes get stressed. Bells mean pressure and children running and they might push me over. I stand in my line and face forwards making sure I don’t look at anyone. The teachers shout about not talking and standing straight but I am doing those already and not sure what I should be doing differently. I turn to see if everyone else is doing what I am doing and now my class is pulled up for me facing the wrong way! I feel to blame. I feel so anxious. I feel different. 

 
Getting to class

I have to remember to put my bag one place, my packed lunch somewhere else and then hang my coat on the right peg. It can be confusing to remember all that while others are talking and moving all around me and the lights are so bright inside. Sometimes I wait until most of the others are in the class but then I worry I will get shouted at for taking too long! Sometimes I forget I have my school bag as it is on my back and I can’t see it! How can everyone else do this so quickly and easily and I can’t?

Class

I listen so much. In fact I listen so hard to everything that sometimes I can’t do my work because I need to stop and listen to everything the teacher says in case she is talking to me. I want to write neat because I don’t want a row but then they say I need to work faster and I can’t do fast and neat. It is hard to concentrate with others so close to me. They move about and talk and turn pages and it is so distracting sometimes. The walls have so much stuff on them, I can hear the tap dripping and I can hear people walking about.

I am scared to talk in case I get in trouble.

Sometimes I just can’t do the work. Yesterday they wanted us to do a senses poem about fireworks. They told me to imagine being at a bonfire with fireworks but how can you do that if you have never been to a bonfire before? I haven’t. They told me to write about what I would touch but you are not allowed to touch fireworks so I can’t write anything. They told me to write what I can smell but all I can smell right now is disgusting school dinners and I can’t even spell that. I just leave that one too.

Then the teacher gets me in trouble for not doing the task. I want to cry. The tears won’t come out.



Playtime

I don’t understand this bit. You play with toys so why call it playtime when there are no toys? Just call it ‘talk time’ or ‘stand in the playground time’ instead. I take my own toys out. Then it rains and we have to come inside and I can’t play with my toys and it is so confusing for me. I don’t like changing things. I get cold at playtime because it is hard to fasten my coat and if I take my time the people tell me to hurry up and go outside so I just can’t fasten it up now. I have one area I like to stand and play with my one friend. We play the same game every day. We like it that way. I want to play with others but I can’t because I don’t understand what they are playing. They don’t have toys. I can’t work out made up games like that.

Lunchtime

Lunchtime is horrible. We have a short time for everyone in the whole school to eat and they want us all to line up and take turns and sit at huge tables with other children I don’t know. I just want to sit down and get time to eat and not have to hear chatter chatter and smell what everyone else has that I don’t like. It is far too noisy and busy and yet no-one will open my yoghurt or peel my banana. I feel lost and confused and just want out of there. 

P.E

I hate PE so much. I never know what we are going to do. Sometimes we do balls and sometimes running and sometimes sports. I hate it all. I know I can’t do it and people laugh. How can I catch a ball when there is so much else going on in the same hall at the same time? I can’t focus. I am so cold. My legs don’t like not having trousers on. My arms miss my cardigan so much. I once fell and hurt myself in PE so I don’t run now because running is dangerous plus they said at assembly to not run in school so I don’t run. Then they tell me to run and I want to ask ‘but you said not to run in school’ but my voice won’t work. I want to cry. The tears won’t come.

I do like school. I like learning and I like doing work. I like having a desk and I really want to be star of the week. I like the other children though I don’t know if they like me. I want to tell you about things that have bothered me like being told to work quicker or not eating. I am tired from it all and now I feel safe. I want to cry. This time the tears will come so please let them. 

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I am ok. I just need to let the day at school wash away so I can rest.

School can be hard but then everyday can sometimes be hard when you have autism like me. 

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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. 

There is nothing ‘high’ or ‘functioning’ about her autism at all.

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My daughter attends her local mainstream school. Her grades are average and her behaviour perfect. She is mostly happy to go to school and is never later with her homework. She appears to be an ideal student and school report ‘all is well’.

But all is far from well with my child!

She no longer receives occupation therapy, or speech therapy or any other support in school. Her grades are considered a reflection of the fact she is coping well and therefore her autism is deemed to be ‘high functioning’ simply by the fact she can answer simple times tables questions or write a story.

But there is nothing either ‘high’ or ‘functioning’ about her autism in any way!

The dictionary defines high as “great, or greater than normal, in quantity, size, or intensity.”
My daughter has high ANXIETY, high EMOTIONS, high SENSITIVITY but not high autism!

She struggles with noise, touch, change, lights, attention, demands placed on her, eating, drinking, toileting, self care, socialising and understanding the world. Just because she can read a book, sit quietly in a classroom and sing in assembly does not make her autism any less.

The dictionary defines ‘function’ as “the kind of action or activity proper to a person, thing, or institution; the purpose for which something is designed or exists; role.” Is it ‘proper activity’ for a person to break down in tears and make herself sick because the school has changed her gym day for a few weeks? Is it ‘proper activity’ for a child to be unable to interact at all with other children in the school playground? Is it ‘proper activity’ for a child to stop eating and drinking completely due to anxiety?

Her autism does not disappear when she is at school. All that happens is she conforms. She ‘follows along’ like a sheep in the hope that no-one notices. Inside she is breaking up, welling up and churning up but all anyone sees is a child who can write in a jotter, sit on a seat and tidy up when asked.

A child with autism in mainstream school should never be assumed to have ‘high functioning’ autism simply by the fact they are in a ‘normal’ school classroom. Just because they have the same uniform on as all the others does not mean they are the same.

Inside they are either feeling sick, shaking with anxiety or screaming. The flickering light is causing them pain, the humming of the radiators is making them want to cry and the child next to them leaning on their desk or touching their pencil case is causing them to want to run away. Can you see any of that or do you just see a child with a pencil in their hand writing?

School don’t see the pain in her eyes when I pick her up at three o’clock. They don’t see the teeth grinding, the skin picking and the disengagement. They don’t see the lining up of everything, the screaming and the cowering in a corner. They are not dealing with the sleepless nights begging me to come in bed beside her or the full on food refusal because her anxiety is making her ill.

They look at test scores, conformity, and academic skills and decide that my child at best has ‘high functioning autism’ or at worse is ‘fine.’

She is neither.

She has autism. Simple as that. She is every bit as autistic as her non verbal brother who has severe learning difficulties and attends a special needs school.

Don’t dismiss her struggles based solely on the school she attends.

School can say what they like but there is nothing ‘high’ or ‘functioning’ about her autism at all.

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