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.

The Five Signs That Tell Me My Autistic Child Needs Help

My children are autistic. I don’t want to cure them and I love them for exactly who they are.

However life for those with autism comes with extra challenges and for both of my children their difficulties in communicating often mean that the first I realise something is wrong is when we hit a crisis. As hard and heartbreaking as it is for me as a mum to watch my children struggle at times with these five difficulties I know it is so much harder for them. They are trying to communicate to me, and to others around them, that they need help and the onus is on myself, as their mum, and on the other professionals to watch out for these signs so we can intervene and support them through whatever the source of their distress is.

Here are the top five signs my children are struggling:

Sign number 1: Increase in meltdowns and shutdowns.

img_2186-1Behaviour is communication. No child (or adult) has a meltdown or a shutdown for no reason. They don’t just ‘feel like it’ or ‘want their own way’ as many have suggested to me about my children. For a child who has held it together emotionally all day at school, like a spring tightly coiled, is it any wonder when they finally reach a safe environment where they are free from judgement and pressure that they have to ‘let it out’? Autistic adults often have the same struggle as they are faced with working in environments that can cause sensory issues, social misunderstandings and continued demands placed upon them all day long.

Long meltdowns or periods of withdrawal and silence are alarm bells to me that something is troubling my child and I need to deal with it.

Sign number 2: Stopping eating

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This is something that my daughter does far more than my son who would eat his own bedding given half the chance! When your world is out of control and there are so few things you can control it makes sense to my daughter to control what she eats. I know right away if a child has called her names in the school playground, or she got an answer wrong in her spelling test as she will refuse to eat even the few foods that she loves.

 

 

Sign three: Mental health crash

It is blatantly obvious to me that my child is struggling when they tell me they want to die. When you misinterpret social situations, take language literally and face sensory bombardment daily is it any wonder at times that my child feels it is all too much? Signs of a mental health crash in autistic people are exactly the same as everyone else. I look out for not sleeping, loss of appetite, no interest in toys or activities they previously loved and wanting to be alone all the time. For my autistic daughter another sign is not having an obsession. When she tells me she is bored I always check if it is just simply boredom or if in fact her mental health is so poor she is unable to even think about doing anything. Lack of motivation, and no desire to please in my child is uncharacteristic and would make me want to investigate further.

Sign four: Increase or decrease in ritualistic behaviour

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My son has a lot of rituals. From when he wakes and has to bring down every cuddly toy from his bed to his arm chair, from the certain order things must be lined up at the side of the bath when he gets washed, to where he sits in the car..it all has to be ‘right’ or he gets distressed. I am familiar with his home rituals and school need to be fully familiar with his school rituals. If he suddenly stops a ritual he had always done, like the night recently he refused to get his nightly bath, I immediately knew something was wrong. Less than ten minutes later he had a seizure. He has no way of talking and his change of routine was a red flag to me that something was wrong. The need for order over and above the normal level makes me sense something is happening and they need help.

Sign five: Self harming

My son has a history of self harming due to severe communication difficulties and frustration but after a lot of support we have got this to a point where he is safe. However the first sign of him returning to making his skin bleed, or biting himself or banging his head against things repeatedly and I know he needs help urgently. He has no way of communicating pain so harming himself can sadly be his only way to show me his body needs help. It can also become a habit and a sign that his sensory needs are not being met.

 

When I hurt I have words, I have knowledge of who to ask for help and I have experience of being listened to and understood. Sadly many people with autism are not understood. They are belittled, mocked, have too many demands placed on them from a neuro-typical world and face sensory struggles every day. They perhaps find transitions difficult, a simple change in routine confuses them or they have misunderstood what someone said to them.

Just because what is troubling them seems trivial to you or me as a non autistics, does not give me or anyone else the right to say my children’s feelings are not valid.

We owe it to autistic children and adults to hear them and support them regardless how they communicate to us. Look out for these signs in anyone you know who is autistic.

It is often the case of actions speaking louder than words.