Almost a year to the day since my last post on here, it feels like time for an update. Maybe it’s an age thing but my mind feels slower than twelve months ago, or perhaps it’s a natural symptom of a hectic lifestyle which doesn’t leave much time for processing. The one bonus of living day to day in survival mode though, is that autism has just become ‘another thing’ which has to be factored in to all our arrangements, as opposed to being ‘the thing’ around which our whole lives revolve. Or maybe it is just a reflection of how much we now instinctively adapt and accept a muted version of family life because, at the end of the day, if Rusty is calm and happy, everything else tends to fall into place. While it may not be everyone’s idea of fun, our summer holiday is the epitome of predictability; quiet, antisocial and with minimal surprises. Yes, things have changed but it works. Most of the time.
So, the headline of August 2019: Rusty is a calm, bright, sensitive little boy with a great sense of fun. It’s basically been a walk in the park… ha bloody ha!
In all seriousness, he has matured beyond measure in the last year and his social development mirrors that. At school, we are told that he plays and works with other children, whilst also spending time on his own when things get a bit too much. I hesitate to refer to his classmates as ‘friends’ because, quite honestly, I’m not sure there is that depth of feeling from either side which is a bit sad really. A lot of that is down to perspective though, because while it might bother me that he doesn’t have any play dates, he is not particularly fussed.
What I can’t let slide is the downright ignorance that he faces, which is obviously bred through parental prejudice and and an unwillingness to understand or appreciate difference. This is nothing new but it never gets easier and is more than simply not getting invited to birthday parties. We have bumped into a schoolmate at a theme park and seen his dad physically move him away from Rusty, completely dismissing any possibility that they could play together for a few minutes. Rusty himself has been told “you need to go to a special school” which really upset him, not because of the connotation (which he doesn’t understand) but because of the implication that he would have to leave a school where he is happy. Ho hum.
On a lighter note, his relationship with his little sister had blossomed into something really rather beautiful. While Little A is a bit of a terror, she is sharp as a tack and, at the age of two, nearly on a par with Rusty in developmental terms. They bicker, they fight and they tease but they also play, chat in a very funny way and laugh A LOT. Whilst exhausting and often exasperating, it is wonderful to see the result of their closeness – she has enabled him to grow in ways I could never have imagined and I have no doubt that he will repay that in time – after all, living with an autistic brother is bound to make her compassionate, kind and non-judgmental, right??!!
Deep breath… with every high comes a low – or so it feels – and where the peaks of this season have been, in some cases, astonishing, perhaps it’s not surprising that the troughs have been immense. Mostly I am talking about the A word… not Autism (that’s old news) but Anxiety which has become a bit of a monster.
Let’s talk numbers for a moment for the numerical world is Rusty’s haven – predictable, non-negotiable and infinitely rewarding. At school, he excels in maths and it’s amazing how many calculations you can work into daily life – he loves it. His go-to conversation starter is to ask people how old they are and what time they wake up in the morning. It is amusing, sweet but so, so boring when that is your entire source of conversation – car journeys can be particularly taxing: “how old is that house… how many miles to London… what time does that sheep wake up?” What not everyone sees though, is how this need for information intensifies when he is out of his comfort zone – questions become constant, very repetitive and completely meaningless – the tension is visible in his eyes and I can’t bear to leave those queries unanswered so we enter a bit of a vicious circle.
There has been a lot of media attention over the last few years on the impact of autism on girls and the fact that they can be very skilled in the art of masking symptoms. Rusty’s situation is different in that his difficulties are very clear but that does mean his deeper emotions go unnoticed. Lateness or an unexpected change of plans can make him so agitated that he will scratch, emit odd noises, flail around and be unable to form proper words – behaviours so stereotypically autistic that it hurts. General understanding of mental health has improved so much in recent years that most now accept it is possible to be both smiley and anxious which is a huge step forward. We are not there yet because he still manages to fool a lot of people and it is probably only at home that the mask really slips but maybe that’s ok, for now.
This has really felt like the year of acceptance, when autism, although omnipresent and often overwhelming, is not always the first thing to deal with.
That’ll do for now… à bientôt!