I have a lot of friends who refer to themselves as “spoonies” due to chronic pain and other conditions. I am familiar with the concept of planning for spoon usage and conserving spoons. However, it occurred to me that the same could be said for those with ASD or anxiety related disorders. Something that I have noticed over the years in my own teens and more recently I can see and acknowledge in myself also. I am putting it down to social energy, let’s call it forks instead of spoons, I think it works well for us.
So, for a person with ASD, Anxiety or any number of other diagnosed or undiagnosed condition the sheer effort of being “social” requires careful planning and consideration. Going “into the out” often involves masking what is going through your head and it can be exhausting. Even when it’s something you really want to do, a trip to the cinema, hanging out with mates, a shopping trip etc… So for arguments sake let’s say that each activity uses a certain amount of forks. And you only have so many forks in your social energy drawer. Perhaps a pop to the local shop uses 1 fork, a trip to the cinema only uses 2 because you’re essentially watching a movie in the dark. But a trip out shopping to a busy mall is going to use up 6 forks, a quiet theme park during term time only uses 4 forks but a weekend or summer holiday trip is going to ramp it up to 9 and you only have so many forks to use in a week.
You prepare your social energy for the things you want to do, but a change of plan runs those forks put pretty quickly. We are familiar with the melt downs when people cancel plans or when things go wrong, one of the early signs of ASD in J was him needing to be prepared, how changes to plans would throw him off, even when it was a change for the better. Me finishing work early and being able to surprise him at the school gates would mean that I would still need my dad to accompany me because he was expecting to see grandad, even an aunty visiting from over seas surprising him would not always result in happiness.
This has continued over time, though we are prepared and make efforts to manage when things don’t go to plan, it became obvious that even when the plans change at their request it still ends in tears. I began to notice that after having an enjoyable day with friends the request for “sleep overs” would commence. Now a sleep over, planned and prepared for, goes smoothly. A last minute change of plan decision tends to result in tears, drama and anxiety. Why? This leads me back to the idea of Forks. They have planned their forks needed for the day out, we have planned a day out taking into consideration all other plans for the week. A sleep over thrown in, unplanned, unprepared for, suddenly requires that rapid use of Forks. A change of plan plus a whole lot more hours without being able to retreat into your own bubble to rejuvenate yourself. A recipe for disaster. No more Forks to give!
I recognised this, I spoke to the teens about it, we saw it in themselves and in the 5 yr old as well. It all made perfect sense. If physical activity needs to be planned and “budgetted” for by those with physical conditions then why would it be any different regarding social activity for those with “social functioning conditions”?
It makes sense then, that a situation that causes increased anxiety will use up far more Forks.
I have always had sever anxiety around hospitals, which is a downfall given how much time I spend in them with the children’s physical conditions. (I blame the hospital visits and seeing how sick my mum got when I was a child.) The appointments crop up, they trigger me, but I know they are coming, I prepare myself. I budget my forks.
Last week, we had an appointment at Great Ormond Street. Daddy got the day off work to accompany me, I felt the usual tension rising, but I knew i had to get to GOSH and the following day we had an eye appt for M. I was prepared. I had a day at home on the Tuesday and lounged by a river with good friends on Wednesday, conserving my forks.
Then Thursday evening struck. The trains went to chaos and we couldn’t get home. The journey took us 6 hrs, meaning we didn’t get in till gone midnight. It meant several changes to route and destination and we wouldn’t have managed at all if not for my life saver brother in law turning out to pick us up and drive us home. (He was the only one with car seats thanks to my niece). Fridays appt saw me leaving N at home with the teenagers because he couldnt face goi g out again, understandable, and life carried on with work on Saturday.
I am now on my 3rd day at home, debating a small trip out for the sake of the little ones, physically I am ok, emotionally I am drained and exhausted. I’ve barely managed to scrape together dinners and the black dog is looking overhead. But we have more hospital appts Wednesday AND Thursday. I have used all of my Forks! My head cries “it’s too peopley”. It is safe to say I have no more Forks to give.
So now I strive to be aware of these feelings. Not just in myself but in the small people who perhaps don’t recognise what they are feeling but when the 2 yr old just wants to lay on my bed with me and watch tv for a little while I will cuddle him and allow that time, there is a reaon he doesn’t want to charge around downstairs. When the 5 yr old states “no, I’m not getting dressed, I don’t want to go out, I want a pajama day!” I need to hear what he is telling me and be patient and work with him. Because the small children are humans too. In this day and age, with so much awareness of mental health and campaigning for it to be treated equally to physical health then if as teens and adults we are allowed to have days when it just feels too much effort to “people”, then surely the children are allowed to have days when they have no forks to give.