In the Autism world, Anxiety goes hand in hand with the condition and Jay is no different here!
The Anxiety, that goes with Autism, is debilitating and over-whelming and I have seen it first hand. I cannot begin to tell you how hard it is to see Anxiety engulf your child, and prevent them from having a normal life.
From a very young age, long before diagnosis, Jay created his own way of dealing with the all day Anxiety he always had, and still has now! Many triggers would set it off, and finding the triggers got harder and harder, as they amalgamated and became hard to predict.
Technology. It exists for so many functions. One function it has, is to be of use to the child with Autism, who requires a diversion and relief from the ever lasting tidal surge of Anxiety on the mind. Jay was visibly anxious throughout the day, be it a home day, or School day, it did not matter, he was still anxious. Eventually we began to twig, that when Jay was engulfed in any activity that included the use of technology, he became visibly much calmer, and to our delight, the use of technology, stalled, and at times prevented or stopped a Meltdown, caused by the build up of high levels of Anxiety.
So, we began to buy equipment for Jay. We bought a Tablet, a Computer, and a music CD player. Whenever Jay showed signs of high Anxiety levels , we would direct him to one of these to help calm him. In the beginning, it was music and his CD player that calmed the Meltdowns and Anxiety. He would put headphones on and would calm down. Sometimes it failed and the Meltdown would follow, the result of high levels of anxiety that could not be calmed. However, the number of these Meltdowns lowered, with use of the CD player and the calming effect it had. I believe it zoned him out. He had a distraction, and I think distraction is a very efficient coping tool for the children who have Autism and certainly for Jay!
Jay soon required more to help calm his Anxiety, so we got him a Tablet. For a long time and into Year 1, he used this Tablet, again as a diversion and a coping mechanism. Then, suddenly it was not enough again. He began to throw it and scream at it, and what was once a calming piece of equipment, became an actual trigger for Meltdown. It was then, that we applied to a charity for a grant to get a Computer especially for Jay. We received a Computer, that was fantastic, as it had a touch screen too so Jay was able to control everything about it. It calmed him and gave him a happy place to go to take his mind off his feelings and his debilitating OCD and Anxiety. The funny thing was, he was jolly good at controlling the Computer! He got so good, that at School one day, he actually managed to turn the screen and it’s programme, completely upside down! The actual programme I mean, not the P.C! Nobody had ever done that before and the School had to bring a Technician in to fix it!! I offered to pay but the School wouldn’t hear of it! How Jay did it we do not know-we only know that he understands technology at a far higher rate than his developmental age.
Using forms of Technology to cope with high levels of Anxiety.
The biggest problem with using technology as a calming mechanism? Yeah-it can break!
Not good! When your child relies on that calming influence, and then that influence is suddenly not there, that is so scary for the child and Carer. Because we know that one of the biggest Meltdown triggers is things breaking and going wrong! It is unpredictable, unplanned, uncontrollable, and quite frankly, to my son Jay, it is the end of the world as we know it! I absolutely dread anything going wrong with our Computers, or Tablets or music CD players. We have one in the car and if it breaks Jay will go right there and then into a full blown Meltdown! Again, this is not bad behaviour, or spoilt behaviour. It is Autism behaviour. When that form of technology fails the child, they no longer have control over it and the calming effect is now gone and they are left with high Anxiety and all those feelings collide with the fact that the thing that they relied upon has now gone wrong and they feel powerless to fix it. Jay will shout at this point, asking me to fix it over and over until it is fixed! If it wont fix he will Meltdown. Once, our T.V went off and Jay could not watch his favourite shows after School. Those shows are always there for him after School, and help him stay calm, when he is trying to process the day, and they mean everything to him. He has connections with the characters, he relates to them more than people, and he feels happy around them! Maybe it is because he can be himself around them, they are not threatening in any way, he does not have to put a brave face on for them, they are just there for him. So, when the programmes would not work this particular day, it was a massive trigger and Meltdown descended on to him in it’s all consuming fire! There is no reasoning with Jay when he gets in to this state. Simply saying stop will not make a scrap of difference, because the reason is not behavioural, although it may look it, it is physiological.
This is because, when a child with Autism, has constantly high levels of Anxiety, their body stays in a fight or flight mode all the time! That is exhausting for the child. Jay has these levels all the time, and the only things that calms him in our home are his toys and technology items. They are SO important to his well being! He needs the security of knowing his favourite T.V characters will be there for him after School, and that he can go to his Computer whenever he needs to, to help himself to self-regulate. If your child has these Anxiety levels, then it is absolutely imperative that they acquire self-regulating skills, because it is unlikely that the Carer will be able to calm them. It is a hard thing to accept , that your adored child requires other means than you to calm down, and attain calmness again. So I would suggest to Parents wondering whether to give in to the lull of technology, to go for it and get you child some form of it, to help then learn to self-regulate. I worried and worried that Jay would be addicted to forms of technology, but honestly, he has not, and when you are faced with a Meltdown that is so heart wrenching to endure, and even worse to over come, you may feel that the slight risk of addiction is nothing compared with the calmness attained by using these machines for times when they need to zone out. Jay has always done other things as well as his Computer, and because we have Now and Next cards for schedule, we are able to minimise over usage anyway. So maybe invest in PECS cards and use them to ensure the child using the machine also has time for other activities-it works for us.
Today, I observed Jay using T.V to self-regulate. I came in to the room, and he was jumping. His face was red and showing signs of a sensory overload coming on. I went to sit down next to him, and observed his breathing. It was fast and laboured. He was becoming anxious. I know these signs and they always lead to a Meltdown, so I continued to monitor his Anxiety levels , and suddenly he jumped much faster , and began to ‘stim’ He flapped his arms, and jumped fast, whilst making stimming noises and he continued to do this for a whole 5 minutes. He then became visibly calmer, his breathing slowed and his colour returned to normal-he was calm! He had done it himself for the first time ever!! He had self-regulated!
I was so proud!
Jumping to self-regulate, using Technology to do so.
On a recent trip to a Walled garden, Jay managed to stay calm the entire time, but today we went for a walk using his SEN Buggy, and Jay was crying the whole time saying he wanted to go home. Jay has an attachment to home at the moment and we are very much struggling to get him out anywhere. He cries out and shouts ‘no’ every time we say we are going out, so now we are saying to him simple consistent phrases to help him to stay calm on any transition or change to the day. We now say “ first trip, then home” This is using the First and Then strategy and it is working to a degree and we will continue to use this way of communicating a change to him. However I am concerned about the big change coming with School beginning again. Last year when Jay started his SEN school he developed a severe phobia of bathrooms and it got so bad he was with- holding and would not enter that room- it was a scary time for us as it was escalating as many of Jay’s phobias do.
So next time I write, I will tell you all about one of the most challenging traits Jay’s Autism brings-OCD- Obsessional Compulsive Disorder
At the Walled garden -a successful trip out!