Autism and Anxiety – An Awful Combination

Another school morning and another anxiety filled hour for my autistic daughter. Her life is filled with rituals, fears, worries and restrictions and nothing is getting easier. She has autism with generalised anxiety and the combination is awful.

It all starts with how she wakes. (Well actually it starts even before then because she often has nightmares.) She immediately has to check that everything is how she left it before she fell asleep. She has to have certain comforts in bed and they are all lined up just so. If anything has moved while she slept her anxiety becomes extreme.

“Mum, someone came into my room again last night!”

“Mum, I can find ….I need you NOW!”

Things must never change. Nothing can ever be moved. That’s her rigidity due to autism but then the anxiety kicks in when something changes and her whole world spins out of control before she’s even out of bed.

Anxiety, autism and sensory issues then affect what she will eat (usually the batter from chicken nuggets for breakfast because she has AFID (avoidance restrictive food intake disorder) and will only touch a select few foods.) Clothes have the same problem and I am down to just three pairs of school trousers she will accept and two polo shirts. I have no idea what I would do if my washing machine ever broke! Socks cause huge anxiety but going without them causes even greater anxiety again. She can’t cope with school shoes so she has trainers.

Then she has her rituals every morning. Set things must be fully completed before she can leave even when time is short. Cries of ‘mum have I got time for…’ can’t actually be answered with a no or she collapses in a heap unable to function. Her mind has so many open boxes that must be closed before she can step out the door. Leaving any open means her day will be preoccupied by one unclosed box and she can’t move on. She can’t ‘just ignore it’ or ‘forget it for now’ or ‘do that later’ because autism and anxiety don’t allow for that.

She has to please everyone. Homework must be done to the letter. Missing a night isn’t an option because anxiety tells her her teacher will somehow know and reprimand her. Her own conscience condemn her because she has to be perfect.

Even before she gets into school she must be first or second in her line because otherwise in her mind she is late. Anxiety makes her thoughts irrational but autism prevents her seeing it that way. Autism then distorts how she perceives the world and those around her then anxiety tells her she’s useless, foreign and not wanted. It becomes a vicious circle controlling everything.

She can’t break rules for fear of being shouted at. Fire drills sent her anxiety spinning because she has to go outside in indoor shoes and without a coat, two rules that she can’t break due to her anxiety and autism. Being outside at the ‘wrong time’ sends her stomach in knots for weeks afterwards. No amount of social stories or reassures help.

Every day is exhausting. Anxiety exhausts her as she lives on her nerves never feels adequate or good enough or perfect enough. Then autism tells her this will never change and that everyone looking at her is doing so because she’s done something wrong.

Autism affects her ability to communicate then anxiety prevents her overcoming this.

Autism affects how she understands social situations then anxiety makes her feel the world is better without her.

Autism means she must obey the rules then anxiety makes her fear for the consequences of being unable to do so through no fault of her own.

Autism makes her vulnerable then anxiety means there’s nothing I can do to change that.

Autism Is a lifelong communication disorder affecting how she communicates, thinks, understands language and interacts with others.

Anxiety is worrying, unease and fear about the unknown.

Together they are crucifying my daughter and so many others.

There is no cure but that doesn’t mean I give up trying to help her.

My daughter is beautiful, kind, caring, compassionate and smart. If only the awful combination of autism and anxiety left her alone others could see her potential and love even more.

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. 
Morning 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?

The 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. 

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.