I lived in London, England in my twenties and early thirties and came across the most interesting scenarios and people on the London Underground. In a heavily populated city like London, with such a diverse demographic, you see something new everyday. You end up becoming quite desensitized to what perhaps in another situation may have been quite upsetting/interesting/different.
One morning at around 11am, I was on the Northern line traveling towards Hampstead. The train carriage was fairly empty with about 15 people or so, as we were well past rush hour. As the train stopped at Camden Town station, the doors opened and a woman got on. She was huddled over, covering her face and crying softly into her hands. She sat down and was clearly trying to keep the crying under control. She looked dishevelled and unkempt and as I looked around the carriage at the responses of the other passengers, I noticed people glancing up very briefly before returning to reading their paper or turning their heads away, looking in the opposite direction. I saw some subtle raising of the eyebrows and some shifting uncomfortably. I realized that people were very quickly assessing this women’s presentation, both emotionally and physically, and coming to some conclusion about her…which lead them to turn a blind eye. Camden Town is known as an area where there are many heavy drug users, many homeless people, and around this area, you will very often see less ‘conventional’ people on the tube. Avoiding eye contact and turning away is the norm. I decided to approach her.
I walked up and sat on the seat next to her. She didn’t respond or seem to notice that I was there. I gently put a hand on her back in a soothing way, which had her jump a little as she was startled. She looked at me and when I opened up my arms so as to invite a hug (or something – I wasn’t really sure what my plan was to be honest), she let out the biggest sob, and just fell into my arms. She wrapped her arms around me and clung onto me so tight, I was struggling to breathe. She started sobbing uncontrollably at this point and I could feel her whole body shaking, while at the same time getting heavier and heavier as she was leaning into me. I held her and just sat there, still not sure what to do. Other passengers were sneaking glances from behind their books as strangers approaching each other is probably the least conventional thing on the Underground!
After what felt like a very long time of holding this stranger (I had gone well past my stop), she started to slow down. At one point she pulled away from me just a touch, so that she could speak into my ear. She said: “Thank you. My daughter passed away this morning.” I didn’t move nor did I say a word. She leaned into me again briefly and cried softly. When she started moving away from me I noticed her breath had slowed but quiet tears kept rolling own her face. When the train doors opened again, she squeezed my knee, got up and left the train. She didn’t look at me or say anything further. I, of course, never saw her again.
Why am I telling you this story? I started thinking about this experience when I thought about difficult behaviour in our kids and the lens with which we look at them. The ASD diagnostic criteria is a list of behaviours. That is how Autism is defined. It is however not what is at the core of Autism. What the behaviours quite often reflect, is the chronic stress as a result of the Autism experience. The diagnostic criteria pathologizes a legitimate way of thinking, behaving and communicating. It casts a negative judgement on autistic people.
As parents we need to check ourselves regularly in terms of the lens through which we see our children and how we are interpreting behaviours, so we can respond in a way that is helpful and that protects our children’s autistic identity and mental health.
I didn’t assume that because the woman on the tube was dishevelled, got on in an area known for its high drug user population, and was more emotional than one would expect to see on the tube, that she was dirty or a drug addict or high and so would be unresponsive to empathy. My response assumed something more was going on. My response simply communicated that I believed that she was legitimately distressed – for whatever reason. I may have been wrong, but on that day, I was right, and I was so glad that I was able to offer an attuned connection and a safe space for that woman.
When our kids are behaving in a certain way – be that withdrawing, fighting, melting down, being aggressive or combative, uncooperative, stuck, repetitive, anxious or depressed – we can’t just assume that it is ‘Autism’ and try to change that behaviour.
We differentiate between misbehaviour and stress behaviour. We need to have empathy and understanding for stress behaviour and go back to last month’s question of “how can I make you feel safe?”
Remember – some of the key challenges for autistic people relate the fact that they so often are expected to behave like neurotypical people. Their way of thinking, learning, processing, communicating is dismissed and often is the focus of ‘therapy’ to ‘fix’ them.
They are living in a world where they are the oranges, relentlessly being compared (and coming up short) to apples. Oranges don’t need to try to be apples, when they are perfectly orange!
The core challenges for autistic people ransom much more empathy than the behaviours we tend to see every day. Keep your focus on that – what is underneath the behaviours - to soften your response to your child.
What can we as parents do to support our kids?
Remember how their brains are different. They are wired differently, and their troubling behaviours aren’t aimed to press your buttons, to hurt or annoy. Just because we don’t find something stressful, doesn’t mean our kids experience it in that same way. Their behaviour is all they have to let us know how hard things are for them.
Take a breath when you are confronted with the tough stuff – have a mantra you can repeat to yourself to create the pause – the distance between the stimulus and your response.
Then choose calm and curiosity.
Connection:
Whole family mindful movement shaking activity: Come into a circle as a family and identify one parent as ‘the leader’. You can then alternate to have somebody else be the leader too, but start with an adult so the ‘pattern’ can be established.
The leader starts out by saying: “We’re going to play the shake and stop game. When we shake, we shake as hard as we can and when we stop….we stand completely still. The trick is to keep both feet FIRMLY on the floor when we shake – you have magic glue under your feet and they can’t move! Watch me (the leader) closely for when to start shaking and when to stop. Let’s go!”
Then you start with shake and stop…shake for 3 seconds – making sure both feet stay firmly on the ground, then stop for 3 seconds, and repeat this 5 or 6 times.
For children who will become quickly disorganised by shaking you could do this seated and the ‘shaking’ part is replaced with enthusiastic drumming on the knees. The grounding of the feet is important so the movement doesn’t become disorganising. The movement from shake to stop is very calming for the nervous system and it is fun to see each other shake with reckless abandon. Be sure to have the stop moments as calming pauses rather than regular ‘freeze’. Perhaps model by closing your eyes, placing your hands on your belly and breathing deeply (perhaps adding sound to your breathing to spotlight).
Compassion:
Is there some part of yourself that hides from the world?
Write a short note to that part of you from the perspective of best friend.
