Tempest has Aspergers, a form of autism. Autism is a spectrum of disorders with different severities and presentations, Aspergers is at the higher end of this spectrum and is sometimes referred to as “High functioning autism”: meaning that she has an extremely high intelligence (most kids with AS are above average, her included) and can function fairly well. However, this doesn’t mean she is unaffected by her autism. Autism and Aspergers affects her every single day in different ways, sometimes subtle and sometimes severe. Sometimes she’ll have a really good day and do very well, and sometimes her days are much worse. Bad days often come when ‘triggers’ appear that upset her in one way or another. Changes and over-stimulation are big triggers for her that may cause panic attacks, obsessive behavior and repetitive “stimming”. Stimming refers to behaviors that self-stimulate, like hand-flapping, toe-walking, repetitive noises or actions. Some kids may bang their heads against the wall, hit themselves, hang or climb on other people or jump and spin. None of these things are intended to be harmful, they’re to help shut out the part of the world that’s frightening, upsetting or unfamiliar… though sometimes they can be upsetting or confusing to witness if you’re not sure what it’s all about.
We help her cope by keeping a routine that is familiar and easy to follow: we have dinner around the same time every night, we do bedtime the same way, and we have strict rules about ‘how much’ and ‘how often’. To an outsider, sometimes these rules may appear to be over the top… but they’re in place with the help of specialists, experts and family therapists who have given us tools to make her life easier and less stressful.
Going to new places can be a big trigger, and can result in a lot of anxiety and tantrums, so we don’t go out very often. Traveling is exceptionally difficult, and when and if we choose to go somewhere we have to be very careful to control whatever we can to ensure her stress levels stay low. The more stressed out she becomes, the more stressed out everyone becomes. Driving is one of the best ways we can do this, as it’s a form of transportation that’s familiar, easy, and very simple to control. In a car we can control the volume, the music choices, the temperature, plus we have the ability to stop and have necessary “Body breaks” on a regular basis. We can also stop and eat whenever we need to. In a car she is not overwhelmed, touched by strangers, or subject to a barrage of unfamiliar and frightening stimuli. This is particularly important if we’re traveling somewhere she’s never been before, or somewhere that will be overstimulating (ie. fireworks, a big playground or park, a concert, etc).
Above all we’re her family and we love her very much. She’s smart, beautiful, talented and amazing: we want her to grow up to be the best adult she can be. As her parents we want to do everything we can to ensure we make choices that make her life as easy to live as possible… not just for her benefit but for the benefit of our family as a whole. Over time we’ve become very accustomed to making these little changes to our daily routine, and to think differently about what we need to do to ensure the easiest possible transition from one thing to another, but to people who don’t know us very well it can be a little confusing. Hopefully this has helped clear some of that up.
If you’re curious to know more about why routines and familiarity are necessary for autistic children, here are some helpful links to start with:
[ Understanding why autistic children need routine ]
[ Autistic children need a consistent routine ]
[ Flying can be a rough ride for autistic children, families ]
Nicole and I were pregnant together and had our baby girls five weeks apart! She brought her newborn, Katie, to this shoot with her in the Uplands and she slept peacefully through the entire thing in a little pram behind us.
