As we are all aware, Phobias in children and adults are fairly common.
I have at least four, I wont share them but they impact me a lot.
The Phobias that go with Autism though, are somewhat different. You may ask how?
Jay’s Phobias are forever changing although some remain constant. So, what Phobias does Jay have and how are they different from Neurotypicals?
To begin with, I need to explain that it is widely recognised that children and adults on the Spectrum have phobias that relate to their physiological state and their rituals and routines and lastly their Sensory System! Normal Phobias may start because of an event or a situation one finds themselves in, and that will cause a Phobia to commence. With Jay, we have seen Phobias that are somewhat bizarre to other people. His first Phobia at five years old was with the sky and the weather. He was terrified of changes in the sky. If clouds moved and blew across the sky, he would go into fiercely distressing Meltdowns that would last for hours. He was scared of the weather and the rain, grey sky and dark clouds, and he would constantly scream and cry whenever the sun went behind a cloud. He would shut himself inside with every door and window shut, because he was afraid of the sky or the clouds. At School, he would watch the weather out of the classroom windows and scream and cry if it began to rain. His teachers would have to reassure him that the rain was good, and that we need the rain for “water to drink” I began to say this each time Jay went into a Meltdown over the weather and I kept the phrase consistent, and to some degree it did calm him. Here is an obvious difference already. I have yet to meet a Neurotypical person who has a Phobia of moving clouds, so severe that it causes them to shutdown and be incapable of regulating.
Weather and the sky, remains one of Jay’s worse triggers for Phobia and reactions to it have run our lives for over three years.
To help Jay, we provided a Weather chart and bought books about the weather, to help him to process what the weather means and why it must rain and why the clouds move. Here is a photo of Jay with his Teddies who calm him, and a book we use, and of Jay using his chart in a moment of Anxiety and in this case he did self-regulate! He also , in the second photo, is using his pictures of the weather which I drew for him, to ease his Anxiety over a day of changeable weather patterns.
Jay and his teddies.
Jay’s calming strategies.
By using these aids, Jay is now able to de-sensitise and calm down about bad weather, and this is something I recommend you buy, if like Jay, your child has Weather Anxieties and Phobias linked to Autism. With Jay, his understanding is around 2-3years and so it has always been a challenge to help him to understand the world around him. We use visible aids, as it reinforces the language we use and aids his understanding on life and his world.
For the last two Summers Jay has had a Phobia of Bees , Wasps and Flies, and again people may say so have a lot of people. This is true. However the challenge with Autistic Phobias, lies in the severe reactions, not the Phobia itself! When Jay sees a flying Insect near him, the sudden noise immediately affects him and he will suddenly make as to run away, whilst screaming and shouting! The Insect has entered his personal space you see! He will then go into a Meltdown, where he cannot see reason, and cannot be calmed, neither can he self calm. The severity of this particular Phobia, means Jay is restricting his life. He will not go outside in our garden, because he knows there are Bees there. He will order every window and door shut, and if we open them he screams and shouts to close it, and the terrified look on his face tells us he very, very scared and he is not able to reason with himself. His reactions are wild and sudden, and if we are not prepared for them, they would catch us off guard. This is why , whenever we leave the house, we fasten a Backpack with a wrist strap attached onto Jay and so we are able to prevent him from running away into a road or other danger, in a moment of panic when the Phobias it him. When he was young and was doing this when the sky changed or the weather patterns were unstable, he would stay in Meltdown for hours and sometimes all day, but now he generally takes less time to calm, but the reactions are still just as severe! There is an important safety factor here and that is why as his Carer I have to be one step ahead always! The Phobia of Bees and Flies, this summer , meant that whenever Jay went out on trips with his Respite Carers, the staff had to keep all windows closed on the bus, as Jay had a particularly severe meltdown on a trip with them, when a Bee had flown near him whilst waiting to board the bus! The Meltdown lasted the whole way home. I have had meetings with Jay’s Care manager more than once to discuss methods of coping with these Phobias and strategies to handle them. I always say, that I would rather a staff member restrain Jay in the appropriate and trained way they do, than he run into the path of a car! It is that serious. I was with jay in a café recently with his Dad, and he saw a Wasp! One moment I was paying for our drinks, the next my son had dropped to the floor screaming and pulling away from me hard and shouting, and all in front of staff and customers. I immediately gave Jay to his Dad, asking him to take him out, and I turned to the staff serving me and said Sorry about that, and they replied not to worry. Jay then went in to the toilets with Dad and proceeded in to another Meltdown over the Hand dryers. Another trigger is noise. Hoovers, hair dryers, hand dryers, and lawn mowers all set jay off into Meltdown! These Phobias and reactions seriously debilitate Jay and also run our life, and every year that goes by, more and more of these Phobias develop.
Recently Jay has begun to use OCD to manage the Anxiety he feels. Rituals also help him to stay calm. The most recent one being to do with a picture I made Jay of frogspawn which I added ‘googly eyes’ to, in order to create a 3D effect. Jay began asking me to touch it. He would bring it to me and say “mummy touch the frogspawn” I would then touch it with my middle finger and say “ooh” This is what we call in the Autism world, a ritual. Linked to OCD, Jay requires me to do these rituals over and over. He asked me yesterday to touch the frogspawn about 30 times throughout the day.
It would appear that Jay is asking me to see my reaction, but I do not think it is that. I believe he is using this to help ease his Anxiety about Bees. He askes me to touch this piece of paper, and then he calms down. I have seen this ritualistic behaviour from him many times. He asks me to draw Caterpillars and Butterflies and also weather pictures over and over again, many times, and it always goes alongside obvious Anxiety and Meltdowns. Jay uses these calming techniques to self-regulate, and it is a constant tiring thing to have to repeat yourself over and over again! It takes patience, and a calmness of mind , a strength of mind too, to acquiesce to these repetitive rituals, without losing your own patience. If I did not do these things for Jay, then we would see more Meltdowns and more visible Anxiety, and that would stress him and distress his mind more and I could not do that to him. He cannot help any of this. It is Autism that drives these things and to understand Autism, is to gain the vital knowledge and understanding required to support and also to prevent certain behaviours from forming and to support the child when they do!
It is a very hard thing to see your child so frightened of the world! As many of you know, Jay is a happy, smiling and cheerful child whenever there are no triggers to set off his Phobias. The times I have got beautiful photos of him, are the special calm moments we treasure, but there is a dark side to Autism, and this is it! It links closely to OCD, Sensory processing Disorder, Anxiety and Rituals and a lack of understanding of the world. The challenges these children face, just to be able to turn up to life and live is colossal and completely stressful for the child and the Carer. Quite honestly, I will admit that I find it very hard to handle, yet I never ever show Jay that. It would be no use to him at all, if I reacted in a way that told him clearly that he was stressing me! Again, it takes a strength I never knew I had until I had Jay, to cope with and support a young person with Autism and all its challenges. Let us remember that even though these children often cannot talk or carry a conversation, they are completely quite able to know that you, their Carer and Parent are stressed with them, and that hurts them more than any Phobia! They need to know that you are on their side, that you have their back, and that your love is unconditional, and given freely, and that they do not have to behave a certain way to attain your love and support! To put ourselves in to their shoes is to realise that whilst they have all these challenges, the person they are requires acceptance and understanding as their Autism is a part of their make up ,a and so cannot be suppressed, and why should it be?
I just need to see this happy face to realise that whatever I have to do to attain this look of happiness in Jay, I will do, without complaint, and without showing Jay how tiresome the repeating of everything is! He needs it to feel calm and happy and so I am going to do it!!!!
Next time: The Changing Attitudes to Autism over Time!