Placing a child with Autism in to a high demand situation, will almost always result in the child reacting in a negative way!
The reason for this can always be found in the response. The child will respond to high demand, by producing a sensory and emotional reaction, coupled with a behavioural response, that clearly shows they are feeling un- safe or scared or over-whelmed at whatever situation the particular adult or child has placed the child in! Too much pressure placed upon these uniquely formed minds, is a sure fire way to walk down the ‘ meltdown’ path!
Of course, when Jay was younger when we had just discovered his Autism, I knew nothing of all this! The paragraph above is the direct result of years of experience!
In the beginning I was not going to change my life! I was going to carry on and expect Jay to fit in and nothing was going to stop me going to the places I wanted to go and events I wanted to attend! I soon learned the hard way! Trips and visits to over crowded places always resulted in full blown meltdown in Jay, tears and physical shut downs happened before our eyes, as our child turned from an adorable child , in to a crying , shouting physical mess! I do not recall the exact moment the elusive concept of ‘change’ began to creep upon me and I certainly did not listen to begin with, however after many times these meltdowns began to get so bad we sought help from an OT! This was the summer of 2015.
Jay’s OT became my first teacher. She really made me understand how Jay was actually seeing the world. The most helpful advise she ever gave me, was to change the way I do things with Jay. The OT gave me ideas to de-sensitise Jay. I have spoken before of his Ear defenders and SEN buggy and caps and dark glasses-all these things helped to calm him whilst outside. Even wearing a Lycra top helped Jay feel more calm-we took it all on board and were very pro-active -we really wanted to help Jay so much. So we did everything we were told!
Then, in 2016 we began seeing the Child Psychologist who diagnosed Jay, who was a specialist in Autism. He began to change my whole way of looking at things! We, his family, were trying to find ways to help Jay be able to cope in public and busy places and to help him stay calm, yet the one thing we were missing was the solution to truly free Jay from his sensory prison! It was something we had never even considered or realised!
The Psychologist said to me one sentence. ” Just do not place the demand on him in the first place!”
Many places around the world have different attitudes to Autism and many of these countries have awful treatments designed to “train” the child to not be Autistic. The only reason this is done is so the child ‘conforms.’ It is not for the child’s benefit because the child is just doing what is natural to them! It is purely so the adult does not have to change their life in any way to accommodate the child and their disability! Maybe that’s harsh or some may disagree and that is fine, but to me the words of this Psychologist rang out in my mind and I realised that to de-sensitise was honourable and did have an effect on Jay in a positive way, however just doing this was not going to stop the meltdowns, because it was clear that we were expecting too much of our boy!
So, I made a decision! I was going to assess each activity we did both on weekends and in holidays, and if it included ‘high demand’ situations I would cross it off the list! Instead, we began to take Jay only to natural places with no people or noise for leisure time as a family! We went on quiet picnics, played in streams, walked through quiet woods and on quiet beaches and we only saw one person at a time when meeting up with people. We did not go to children’s parties unless they were family or very small ones, and we also gave Jay the choice in what he wanted to do or better still, what he felt comfortable doing! This strategy began to pay off very soon! No more busy shopping centres, no more busy playparks, no more children’s farms covered with visitors and definitely no more mixing with large numbers of friends! Perhaps some of you are reading this saying to yourself “yes but then you are giving in” -that is fine to think, yet if we are to help these children to feel accepted and valued as they are, NOT, as we would make them, then we must accept their inability to participate in what we neurotypicals think of as normal and the desired way of life then, and only then, will we have achieved true “Inclusion”
Inclusion is not the way we place children with Autism in the same situation as neurotypical beings, it is the Acceptance of difference and of valuing that not everyone is the same! By not taking Jay to these situations, I am not spoiling him! Instead I am honouring what he CAN do, giving him respect to decide for himself if a situation is too much for him to handle, therefore I am truly listening to my child’s emotions and feelings, which is a very difficult thing for some adults to do!.They feel they need to have full control over their lives and their child’s. I no longer feel that way! I see clearly now, that the reason Jay was having very bad meltdowns and crying and saying he was scared, was because, he was scared! His disability means he cannot cope in the same way Neurotypicals can. Why should I force him to? Shall I change him by force? Is that right? I don’t think so! I believe in freedom so I will give my child the freedom to choose his life and I will adapt mine accordingly in order to help my son stay calm in this loud world, where everyone has an opinion about what we all should do to conform! I say, let’s break free from chains and what is ” normal” and celebrate difference and respect these children and adults for who they are, and not what society tells us they should be!
Next Time – Dispelling Autism Myths- But they don’t give eye contact do they? Or show Empathy? Finding out the truth about Autism!