Autism & Transitioning in Mum Speak
Transitioning. An impressive looking and sounding word, is it not? I have only now looked it up in the Oxford Concise and the definition goes like this: Transition = “the process or a period of changing from one state or condition to another”. Interesting synonyms were: change, move, passage, adjustment, shift, switch. And then it goes into the whole gender transition thing…The definition is straightforward enough and makes perfect sense, most parents have heard of it re the move from primary to high school.
However, I clearly remember standing at the entrance to Henry’s specialist ‘school’ in Singapore when he was three (lying on the floor crying/shouting having literally been half dragged across the public shopping mall floor to get to the said entrance) and being told that what he was struggling with was ‘transitioning’ and having no idea what that meant.
Once explained it made so much sense and I cannot impress upon any parent of an autistic child who struggles with this enough i.e. ALWAYS have this in the back of your mind, ALWAYS. It helps you prepare them for what to expect and what is happening next and reminds you to prepare your thinking and subsequent communication with your child. And never underestimate the fine detail. Difficulties with transition can occur in as simple a situation as getting out of the car or moving across a doorway from one scenario/place/area/setting to another.
I so often find that it’s the simplest daily little things that we take for granted/don’t even notice/barely even know we are doing that can cause the biggest upsets for autistics, and I am repeatedly learning through mistakes, sometimes the same mistakes too, wah! So, you’re at home and think of something you need to pop out for or mention something to an older sibling and it’s a bit too long after breakfast and a bit too close to lunchtime and before you know it, you have made a spontaneous decision and simply lob the autistic into the car to speed things up, and how well do you think this shopping trip goes? Exactly, I sometimes don’t even tell Henry anything making the huge mistake that since he’s nonverbal there’s no point anyway.
Even when I do prepare Henry and tell him where we are going and what to expect it can still go wrong and often does. It's impossible to plan for the unexpected and impossible to gauge what his expectations are when I say for eg 'beach' and since he doesn't communicate he cannot ask the questions he needs answers to.
New places and spontaneous anything upset him the most but that's life and I strongly believe the more we expose him to and require of him in terms of transitioning the stronger and better he will become at coping and hopefully one day actually enjoying the experience we have set him up for. He has such an incredible visual memory and the second and third time he visits anywhere is always better.
At age three Henry could not make the transition from daytime to nighttime; from pj’s to clothes; from home doorway to car door; from carpark to building entrance; from ‘goodbye’ to ‘hello’; from the old car to the new car; from weekday to weekend etc. etc. etc. What an exhausting time and it’s good to now look back realise how far he and we and I have come.
For parents of little autistic ones out there, the best unusual advice Henry’s therapists ever gave me was to weight his school backpack! It worked. The usual things you figure out for yourself anyway like a good routine, timings, simple and few words, using their name first before communicating anything are all excellent. But, trust me, a few heavier books in the backpack, on it went as soon as we got out of the car and Henry astonishingly just started to walk properly, forwards to where we were going.
Its kind of like a big hug from behind that helps to make him feel secure and block out some of the sensory information coming at him from all angles I think, I don’t really know. We still use it today whenever we fly and the minute that heavy backpack is on he seems to be ok and ready to proceed through the airport. There’s no magic to the rest, it just comes, with age and time and patience. They slowly start to process more than one or two words.
They slowly start to listen to and follow simple instructions. They slowly start to understand that extraordinarily helpful phrase “First xyz, Then xyz” eg “Henry, first car, then shops” and slowly, very slowly routines can become less detailed and to-the-minute accurate.
Quite a few Mums of autistic young adults have sent me messages or approached me to tell me that my writing reminds them of their time years ago and to assure me that Henry will be ok and he will get there as their children, now young adults have done, all grown up and coping well and either working or studying or not but, all of them, it seems, are able to regulate and communicate ok as young adults. I love and hate hearing this.
Love it because it’s inspiring and astonishing what autistic people can cope with and achieve. Hate it because it gives me hope and makes me feel like I can stop fighting and I dunno, relax, heaven forbid. Love it because these women have taken the time to comfort and share with me as only they who have lived it can. And hate it because what if it doesn’t come true for Henry, they are all different after all. But, I have to believe he will be ok, look what I just tried to tell the parents of little autistic toddlers in the paragraph above!
He IS going to be ok. To my family, please believe it.
Happy transitioning thinking, prepping for, and being aware of, everyone, and roll on school start! That reminds me, a quick pop at schools (it takes both the primary and the secondary working together on this) who often do not do nearly enough for transitioning autistic children into secondary - you have no idea how much detail is required! Please just ask. And parents or pupils themselves, make sure you are happy and satisfied with your transition experience. Good luck.