When people thinking of the challenges that may be faced by autistic children they tend to think of things like the risk of social isolation, speech differences etc but in reality just being autistic in a largely neurotypically biased world is where many autistic people meet most daily challenges.
For example at the moment we have some work being done on the house. Last winter it was bitterly cold in our house which was originally a fisherman’s style one up one down but since has been adapted to provide slightly more space for modern living including a converted loft. It is still old and drafty however and as a result of not being able to keep it sufficiently warm we were offered the opportunity to insulate the loft conversion (plus have a new heating system) under a government scheme, which is really great but it also happens to my sons room.
When the reperesentive arrive from the company that would be potentially fitting it I explained to him my son is autistic. I told him that I may not be able to empty the room ahead of time because my son can get very anxious at things being moved, I explained that he would have to stay elsewhere for the duration of the work and I would need to know how long it would take including the time it would take to put the room back as it was. He told me two days, I said ‘are you sure? I am fine if it will be longer but I need to know as I will need to make arrangements for my son.’ He reassured me that even with all I had told him it would be two days, radiators changed, room insulated, plastered, new skirting, painted and the room back to normal.
Now I am no builder and no nothing about skimming plaster or drying times but it seemed quick especially as my sons room is jam packed with stuff…
Fast forward 3 weeks and here I am 3 days into the work, my house is upside down and I can’t use my bedroom because it is full of my sons stuff. The builders knew nothing of what I had told the original sales person and I had to explain it all again feeling rather guilty as they scanned the room for somewhere to start a among the 49 toys monkeys, boxes of Lego and the shelves and shelves of DVD’s.
Don’t get me wrong the workman have been great but they were not informed and don’t really understand what I mean by autism or indeed that when I say exactly I mean just the same in every detail, anything but other will remind my son some strange person has touched his stuff, make him fearful things are missing and make him fell unsafe in his bedroom – which up to now has been his one sanctuary from sensory overload, as well as demands and expectation that are unwittingly places on him in the rest of the world.
So anyway my son was shipped off to his dads for the two days. Even though this is part of his regular routine he was stressed knowing things were happening in his inner sanctum back at home. His dad rang me telling me he was tearful and unsettled but I could not invite him back home as if he could see the upside down room I was looking at he would believe it could never be the same again (I had begun to wonder myself by this point to be honest). I did what I could by ringing my son to reassure him that he would be home soon and all would be the well however.
So here I am sat in park trying to have a moment of calm.
It is day 3 today and the skimming has just been started, twenty four hours before anything can go against them, at least a week for them to cure so they can be painted, sometime after that before anything can be put back up on them and my son due back tonight.
Ok so his dad will likely be able to keep him for another night, but coming home to plaster pink walls, devoid of his posters and his hat collection will be stressful for my son. Knowing he will still have men coming back he doesn’t know to touch his stuff in order to paint his room (as well as the ones to fit the heating which, it turns out, are a separate team) will be more than anyone who is not familiar with autism could imagine. On top of that I know my son will struggle with the inevitable smells new work brings, the tiny details in the room which are now different and the feeling that his inner sanctum has been breached.
So many people do not realise that small accommodations, understanding and being clear and honest can actually make a bigger difference to an autistic child and their family than any therapy or intervention.