One night, some time before he turned 4, The Firstborn was agitated and upset. This was a long time BD (Before Diagnosis), but I had already worked out that this child did not do anticipation at all well. SO, we chatted, and I let him work towards what was on his mind. Which was that he was scared about turning 4. Because he didn’t know how to be 4. It was a classic light-bulb moment! Of course, he didn’t know how to be 4! This child, who needed every single new thing – transitions, sensory alterations, damn it, even weather changes – signalled and made concrete, could NOT imagine what was ahead of him. I was SO relieved that we’d worked it out. As he snuggled down, I explained that was why birthdays only come once a year because you got to practice being your new age. How could anyone know how to be a new number on the first day? I asked him if he felt he was good at being 3, to which his response was a resounding YES! I reassured him, that as the year went on he would get to be so good at practicing 4 that his little sister would want to catch up. Which I hoped meant he’d be happy to turn 5 the next year to keep one step ahead of her.
The Firstborn slept well, developed into a marvellous 4-year-old, and we had the same anxiety again the next year. With both him AND his little sister. And with our 3rd child. I was reminded by of this by a video by Princess Aspien (https://youtu.be/z1wgGlXS7pM). In it she describes exactly what all my children have experienced. For all of them, aging and all it’s unknown qualities, cannot be visualised from experience and is frightening. Well. Terrifying really. I’ve come across this phenomenon in Autistic children quite a few times as my children have grown. At the special school The Firstborn attended there was a lovely boy who regressed from the age of about 11. Slowly, nearly every ability related to communication slipped away. His anxiety increased to dangerous levels, and just before his 13th birthday he became suicidal. It was a terrifying time for him and his family, and all those whom cared for them. And then, on the day of his 13th birthday, there he was at school – talking, interacting, engaged. Happy! You see, he was still alive. When he got up that morning, he could explain to his parents that he had developed the idea that when he stopped being 12 he would die. Because that was when childhood ended. Obviously, they asked why he hadn’t tried to tell anyone what he was feeling. And his answer was that he didn’t know, or have the words to use.
Very often, our children cannot visualise concepts that they must endure. Think of the issues many of us have with toilet training, transition to kindergarten, school, high school. It’s my own experience as an Autistic person that if I cannot visualise a new thing/event – and for me, it IS a visual mind picture – all I can see is a black hole. Literally. I see myself walking into the void. Nothingness. Imagine the fear on my very first trip to Europe – in the years before the internet and iphones. I fainted on the plane. I threw up on arrival. I still remember the out-of-body experience when I landed. My body – me – was standing on previously non-existent ground. The experience was THAT intense.
I am fortunate. I didn’t have this fear of birthdays and growing up. In fact, I was the opposite. I was never a child. It was such a relief to have my body and the world match my own self perception as a human being! But I had to learn how to manage it in my children. So here are some suggestions, based on our family’s practices –
- Be sparing about referring to up-coming birthdays. For a while we had to code word them as “natal festivities”!
- Include the child/ren meaningfully in any planning of events, guests, etc.
- Follow your child’s lead. If they talk or respond anxiously about birthdays, see if this fear is part of it, and reassure them about time to practice. Make opportunities for discussions to arise.
- Don’t refer too far ahead to new stages, e.g., kindergarten – or if you do, allow room for uncertain feelings and ambivalence about change. Don’t keep emphasising how “big” “responsible” “exciting” this new thing will be. They don’t know that yet!
- NO surprise presents! Ever. We learnt this one the hard way. Get them to tell you what they want. Mind you, make sure they are realistic. We could not buy a German Shepherd dog every time it was requested. Redirection was required. And an appropriate parental response.
- No wrapping on presents. No envelopes on cards. They might hold booby traps. Well, that’s what you’d have thought watching the way our children approached such items. Make sure family and friends know this. There are some adults who get disturbingly upset if their gift is not received with rapture…
- Caveat! – that line “if you’ve met 1 autistic person…” – none of these suggestions might suit your child. On the other hand, just talking about how our children think such unusual thoughts might ring a bell, and you’ll notice something new.
And my final words of wisdom
Watch Princess Aspien’s video. Here’s the link, again, because I think it’s a Damn Fine Resource (https://youtu.be/z1wgGlXS7pM). Such an amazing young woman, who understands herself, and is learning to grow up – her way. She’s also a bit of a reminder. It’s so easy to get caught up in the day-to-day routines and crises and bustle that parents can forget an important point. Autistic children grow up – into Autistic adults. Helping them now, when young, to understand how they think, what they feel, and how they ARE gloriously different, all goes toward giving the tool they will use as adults. Just like Princes Aspien.
Positively Pink Àû 