Despite hearing many many times that Once you met one autistic person… you’ve met one autistic person there are still a lot of assumptions made about people on the autistic spectrum, and the one I come across most is that they cannot cope with change. Just Googling the words autism and change returns pages upon pages of information on how to help autistic people code with the changing world we live in. So it must be true for all autistic people right? Maybe not…
This was a subject covered in the Cygnets course I attended shortly after Victoria’s diagnosis and helping V deal with change became one of those ingrained things that become second nature after a while. If anyone was visiting us at home we had to carefully consider exactly when and how to tell Victoria about it. Too early and she would obsess about it for days, too late and the surprise would lead to a meltdown of the senses as she would quickly become overwhelmed. Even with the right amount of notice I’m sure my family all remember arriving at our home to find Victoria hidden in a corner somewhere, refusing to acknowledge their presence for sometimes up to an hour, appearing to be scared but actually just trying to process the situation. And that is just people she knew! Dealing with strangers coming to the home (builders etc) was harder still, and planning days out and holidays became an art form! But as I say, it just became our norm.
But kids like surprises right? As Emily got older I considered whether it was fair for her to miss out on those pleasant childhood surprises that stay in the memory banks forever because of her sister’s autism and over time have introduced more and more surprises into their lives. Seeing their faces as they approached the theatre and realised they were going to see Matilda the Musical on Father’s Day this year will stay with me, and them, forever. And you know what? Victoria dealt with it like any neurotypical child would. Mostly anyway. A quick noted on that… we watched a relaxed performance of Matilda which I would thoroughly recommend… the amount of effort the theatre staff and cast went to to ensure everyone could enjoy the show no matter what their challenges was simply amazing. Check out the link for a list of dates for relaxed performances.
Change is inevitable so getting used to it is a skill V needs to learn. Sometimes the best ways to learn are to be thrown in at the deep end and I can say without doubt that the past year has seen us all experience more change in our lives than I ever imagined. In January VIctoria started at a new school when, after 3 years of fighting the local authority, they finally conceded and allowed Victoria to attend a school that can best meet her need. It was something I had put huge amounts of effort into making happen (EHCPs, meetings with the local authority, preparing for our day in court etc) but when the time came for her to actually start… I wasn’t ready to deal with the change! Her mainstream school had been a large part of her life for so long and she had many friends there as well as parents and teachers that adored her and we knew the routine of the school day; I wasn’t ready for the unknown of a new school, a new routine and sending my little girl off each morning in a taxi. Victoria however was fine with it all, almost embracing this new chapter in her life and walking through the school gates with the biggest smile on her face, something she has done every school day since.
And without going into the details, both Victoria and Emily have seen their parents separate this year which has been hard on us all but they have not just coped with the change, but recently begun to embrace their new world of 2 homes and a whole new routine split evenly between mummy and daddy. They never cease to amaze me, but on this one point alone I have been blown away by the maturity they have shown and how adaptable they have both been to the monumental changes in their life. We are a few weeks into this new routine and it has quickly become their new normal; they now know who they are with when, who is picking them up from school and who’s turn it is to take them to hobbies. In fact, I think they have a better handle on it than we do!
There have been some bumps along the way and I’m sure there will be many more over the coming months and years, but for now change is simply something they have become used to which can only help them to become more resilient in the future. And to aid in this, rather that protecting them from the changes in life that will inevitable come, I will aim to help them to embrace the opportunities that change can give whilst building their resilience when faced with unwelcome uncertainty.
Maybe autistic people can deal with change after all?