Jay’s issues with the weather started when his OCD kicked in at age 6! As a nation we tend to be a little obsessive about the weather as it changes so very much, however in Jay’s mind the weather stimulates his sensory system way too much for him to process. Let me explain! When we, as in Neurotypical people, look at the sky we see clouds. We may see them moving and our brains will process this information immediately and we will think nothing of it. When Jay looks to the sky he sees those clouds moving but to him they are scary. When Jay watches the sky he tells me he is scared because of the clouds. Now, Jay doesn’t fair well in dark rainy weather either ( not many of us do) however for Jay it is again far too much sensory information for his brain to process, therefore he becomes scared by it. When people with Autism receive too much sensory information at once ie in this case lots of clouds moving fast across a dark sky, their brains can go into a shutdown or meltdown. This is not a tantrum. Tantrums happen when a child has had a demand made of them and they do not wish to comply. Meltdown is a sensory response to stimuli that the person cannot process quick enough , leading to the meltdown. So, for us as a family the weather really is more than relevant to us because it defines the kind of day we are going to have!
The photo above shows Jay looking anxiously at the sky one summer’s day when it was beginning to cloud over and thunder. I love this photo however I know on this day he was pre -meltdown in this moment because of a sudden change in the sky. It is not all bad though, as Jay also loves the sky and the sun (don’t we all ) and in this next photo I have captured a happy moment as Jay was looking up in happiness because his beloved sun had come out!
These extreme reactions to weather are obviously not the norm. Being out in public with a child who is repeating over and over that the sky is scaring him or the sky is too dark is not easy at all! We have had times when people have looked over at Jay as he would go into meltdown because the sun had gone behind a cloud and as he said “the sun is gone where’s the sun? ” the onlookers would pull faces! It is quite unbelievable really that people can react to a small innocent child like that but I assure you they do! However, and I will advise anyone dealing with a child in an Autistic meltdown, the only thing one can do in that moment is to zone out and re-focus on the child only . This is a skill that has taken me years to do! It really does not happen overnight and one has to master it and it takes strength and above all calmness to achieve it!
We soon discovered, as Jay turned six, that other things as well as the weather affected him in a different way. We live near high moorland and we are a nature loving family who love to roam and we would take Jay up to the moors frequently. However at this time when his extreme reactions to weather had begun to seriously debilitate Jay’s quality of life and of course ours, we discovered that he could indeed feel Barometric pressure when high up and this included the approach of a storm. The higher we drove, the more Jay would say three words. “ouch it hurts” These words he repeated over and over and when we would stop the car and get him out for a walk he would then completely scream and shout the words “no it hurts it hurts.” Eventually we started to realise that our ears would “pop” at this altitude and maybe Jay was feeling that same pressure. Then we got to thinking, what if Jay feels that pressure ten times more than we do? The sensory system is huge and complex, with 7 different systems. These systems are: Sight, Taste, Audio, Touch, Smell , Proprioception (movement and spacial awareness) and Vestibular (balance and body control.) In Autism all these senses are scrambled and messed up which is why a person with Autism struggles to process information and receives all these messages in a scrambled manner, thus resulting in loss of control both physically and emotionally hence the autistic meltdown! We soon realised that Jay could well be feeling the pressure being up high in a more exaggerated intensity and at that point we stopped. We were not going to subject our boy to that when he didn’t need to be up there and we now only go up to the higher places where we live when Jay is with his respite workers. My husband and I have enjoyed many a walk up on our local moorlands as we have a few hours to re-boot and re-charge our energy, and when we feel the pressure in our ears developing we think of Jay and how incredible his mind really is. The same applies to Thunder and storm pressure. Have you ever developed a sudden headache and then it thunders? Again Jay probably feels this headache worse and indeed he has said in storms that his head hurts. How he sees the world in which we have to live is indeed different and special. I often think, if only we lived in a warm steady stable climate our lives and Jay’s would be so much easier! There are more storms some years than others but I remember many thunder storms one summer in the holidays and Jay was in a constant meltdown. This means he would go in and out of meltdowns all day long and let me tell you that this is utterly exhausting to a child. Imagine your “fight or flight” response to something you are afraid of, then magnify that emotion times 20 and then imagine you are in that mode for 2 or 3 days straight. How exhausting would you find that? What is the answer? One word: Rest, and lots of it! The child with Autism, experiencing this high level of anxiety will often sleep in response to it as a coping mechanism and the child would require constant support and supervision in those times as they may hit out or shout or scream or push you away as they are so overwhelmed and consumed by the emotions and feelings.
For purposes of education here are a few pictures of the visual aids we have to help Jay when he is in these intense moments and also to try and prevent this kind of constant meltdown occurring or reoccurring. We have a weather chart so Jay can have some control by looking at the weather and adding a card to his chart, and a feelings board, which I created for him, allowing him to put a name to the way he is feeling and again plot that on his chart. Note that I have added two sub-headings ” How I feel” and ” how id like to feel” this way Jay can identify first how he is feeling and secondly how he would like to feel. This has worked for us and because he can see the emotion face he can find which emotion fits his. People on the Autism Spectrum can struggle to convey their emotions but that does not mean they don’t have them. To dispel a common myth that they do not have empathy-yes they do, they just cant communicate it!