Thursday, 5 September 2019

Autism anxiety with the return of school.

Hey readers,

It is the start of September which means the return of school if you have children, which I do by the way.

So what is this post about your asking? Well, it is about my eldest who is autistic (hasn't got a diagnosis because to get a diagnosis you need an assessment at school but sadly my son masks his behaviour).

Masking refers to an autistic person using coping skills learnt through observation to hide autistic struggles. 

This is learnt behaviour so he will hide his anger, his hitting out and meltdowns until he gets home and releases it all where he feels safe and comfortable to do so. 

This, however, has a cost which means the school doesn't see this behaviour, therefore, means that he can't possibly be autistic because he doesn't show the right characteristics in ONE setting.

Bear that in mind that it is a spectrum and people behaviour different in settings and with different people. Sadly the child that doesn't exhibit the classic characteristics correctly does not get the right support and will carry on struggling.

 It is ridiculous and unfair and let's face it comes down to money which is being cut drastically in this government.

 I do feel frustrated but it is something that is out of my hands and I have no control over.

Right anyway that was tangent (by the way I am autistic and that is a very common trait in autism). Getting back to my main point of this post is that I want to discuss the week and a half leading up to the return of school for my eldest and the struggles that he faces with the change.

School holidays are six weeks at home with less structure which my eldest struggles with so much. I try my best to have a flexible structure. However I myself have been dealing with a flare-up of a kidney disease that I have so that is wiped me and lost a lot of energy being ill in bed.

I am lucky in one sense of having autism that gives me an understanding and empathy with my son because he is basically a mini-me in pretty much in response to anything.


My son in the past two weeks has struggled and not just a little bit but a lot. He finds it extremely hard to deal with emotions and putting his thoughts coherent in a sentence to someone.

He struggles greatly with change which let's face it returning to school is a big change from having no school to six hours at school in a busy and loud environment.

He struggles with the anxiety knowing he is going back though he does have friends and has fun with them there are challenges he has to deal with.

 One being at break time he goes over-stimulated and stressed so much that he has a chair placed in the school playground where he can have a break from the stimuli and has a book to read to give him a chance to switch off and escape.

The hardest aspect of my son's behaviour to deal with is his anger which is just a response to the anxiety. He has big outbursts and even stamped on my sons head. This is worrying and was the first time however he is been very hostile and it is scary as a parent. It is something we are ongoing to try to find alternative strategies but it is something that takes time.

Sleep is a big problem. He finds it hard to switch off and constantly asks questions before bed. He always asks what he can think about. He doesn't normally go straight to sleep but stare at the ceiling thinking things over. The times when he does fall straight asleep when is totally exhausted and burnt out physically that he hasn't the strength to stay away.

He has repetitive behaviour where he asks the same question over and over again or he repeats words. This is an autistic trait where repeating words or phases is comforting for the individual.

My son does non stop talking and hardly stops unless he is fixated and lost in something such as colouring or making something like a den. It is exhausting because it is not the classical conversation with to and from responses. He states facts and lots of questions which is unbelievably exhausting after an hour.

With anxiety, my son does self inflict pain to cope with the emotional side of how he is feeling. He typically scratches his neck, bites his nails, hits his head, picks his skin around his fingernails. This is his way of coping with the unknown, anxiety or something that he is not in control with. It is not ideal as it causes pain but is very common in people with autism as a way of trying to communication and expressing the feelings that they have as communication verbally is something very difficult to master with autism. 

My son ever since a young age has a desire to have something in his mouth to chew or suck on for comfort. When is a baby he would suck his thumb and we spend ages stopping him from doing it.

 At first, we thought this was a baby thing however he has not lost that need to have something to put in the mouth and through observation, it is a result of stress, anxiety or having no control over something. 

He now everyday chews and sucks on his t-shirt. He has a chewie which is a silicone shaped item that he can chew on safely to self-sooth him. However, he takes off the chewie or he forgets to put it on when he gets changed therefore ends up chewing his top. The result of this is that his top is soaked and his chest is getting bad skin. He has to change his top 2-3 sometimes a day when really stressed. 

He finds it hard to focus on anything when he has anxiety. He can't settle and constantly moving. I try and give him things to do to distract him and calm him down. He responds well to using his hands so he could be making jewellery, colouring-in, writing or putting sticker cards in the book as a way to help give him some focus on something then dealing with the anxiety.

Meltdowns during the lead up to the return of school are coming more frequent with my son. He just screams for long periods of time. He really struggles to deal with emotions and change along with the uncertainty of something new occurring. He can't cope and needs to get that anxiety and frustration out somehow and the thing that he does regularly now is what is called a meltdown. 

A meltdown is a response to the overstimulated and emotional situation that he has experienced during the day or over a period of time. It is like you lose control and don't know what to do, you just really want that extremely unpleasant feeling to go out of your body and get back to normal. 

I myself have meltdowns and they are exhausted because they take your energy, frustration, angry at that moment. They are intense and after you have to deal with the guilt of the outburst because you know it upsets you and the other people involved. 

When my son goes through a meltdown he doesn't want to do anything, he refuses everything. It takes a lot of time and energy to bring him back to save place where he is violent and shouting. 

Most of the time I take him to a quiet place (normally my bedroom) and shutout as many stimuli as possible such as closing the curtains, turning on soft lights etc and this has been somewhat helpful to calming him down. He also loves mummy's bedding which is waffle and that is a sensory pleasure he can get to help him to calm down. 

So, yeah a couple of weeks is like a volcano that builds up with time and you know that he will blow. He has does this for the past four years now since he has been in school and responds exactly the same way everytime without fail. 

All you can do as a parent is provide support and space. Making sure you talk to him and give him as much information. He can frustrate me and sometimes I feel helpless. But I still crack on and keep going because as a parent you do your best for your child with what you have.

Cheers for reading X  






8 comments:

  1. It sounds like you're doing a great job. Thanks for taking part in #ThatFridayLinky

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  2. I hope that he soon settles down into more of a routine. He is so very lucky that you totally understand and are there supporting every step. #MMBC

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  3. It's good he has you to understand him. When my eldest son was diagnosed at age 12 I didn't even know what autism was. He had a lot of traits that you explain about your son and my son ended up not going to school as they didn't support him. I'm so much luckier with my daughter, now 14yrs. She was diagnosed at age 6 and with my understanding and the school being brilliant with her, her anxiety is really under control. I really hope that your boy settles soon, it's a shame the school isn't more help. xx

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  4. Thanks for the inside view of mothering and autism. I admire your deep understanding of your child.

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  5. Sorry to hear about your kidneys, I hope you are feeling better now! I was prone to kidney problems a lot when I was younger, it isn't nice so you have my total sympathy! The summer holidays are a nightmare for children, they totally need routine... and so do I! You are right, you do need to keep cracking on as a parent - but school should be helping you a lot more! Stay strong xx Sim #PoCoLo

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  6. Ahh! I understand the masking. My youngest is good at that too. We were told by professionals at one point that it was impossible for her to be autistic because she hid it at school and was different at home. One professional said that autistic people act the same everywhere. Grr! She got a mouthful off me, the head teacher of primary school and a school nurse. hehehe
    She was diagnosed with social anxiety.
    Your son sounds a lot like my girl. The sleep issues, repetitive behaviour, the non stop chatter unless she has blind focus on something and the self inflicted pain. My youngest picks her arms.
    Thankfully because my girl is deaf in one ear she gets some extra support and probably more than she is entitiled to.
    Sending love and hugs. It sounds like a tough couple of weeks for you and your son. You are doing a great job x

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  7. I hope everything goes ok for you all. You are doing a great job #PoCoLo

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  8. I used to work for a charity that ran a school predominately for youngsters with autism. What you read doesn't surprise me but I had not heard of masked behaviour before. I hope you get the support you need and your son settles into school.

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