How To Support Your Child Through The Worst Phases Of Life
“I have arthritis. My fingers get affected, esp the middle finger on my right hand is swollen and very painful. Even a light tap hurts a lot. Being my right hand, I hurt myself many times a day as I go about my household chores. The other day as I was shooting a framework with Vishal, I turned suddenly and my hand slightly banged against the wall and my middle finger got hit. Immediately I turned off the camera held my finger in my left hand and jumped up and down screaming in pain. It was a shooting pain that hit the nerves in my head. It all happened in a fraction of a second. I immediately regained my composure though I was writhing in pain and sat down. Later in the day as I was thinking of this episode it struck me that I had lost self control for that moment.Though it was a slight tap, the finger being already sore and swollen the pain was unbearable.”
– Viji Srinivas
As Viji narrated this scene at our weekly class, it transported me to the world of autistic individuals.
Viji was able to calm herself down rather quickly. And because she could communicate so clearly, she could let us know what was going on.
What about autistic individuals or highly sensitive individuals who experience this situation in their lives?
This might well be their experience when they’re in pain or when they’re having a meltdown.
The best recourse would be to understand from them directly.
Take a look at what these autists have to say.
“A person with autism hears every sound intensely magnified. Thus, if the tone of voice is harsh or strict, they will feel scared and threatened and, consequently, may inadvertently scream or even attack. Aggressive behavior is brought on by fear.”
– Joao Carlos Costa, 21, non-verbal, autistic “Low pitched notes really make me feel like love might be truly possible. High pitched notes make me feel like I could go crazy with pain and sadness. Great rhythms can make me feel like life is freedom.”
– Jeremy Sicile- Kira
Vishal has now begun expressing and told Viji recently, that some sounds hurt him on the top of his head.
The point is that we’re supportive and understanding of others undergoing extreme pain (like Viji above). But with autistic individuals, we tend to judge every move.
How can we be more supportive of autistic individuals?
1. Understand instead of judging
The point is we’re supportive and understanding of others undergoing extreme pain (like Viji above). But with autistic individuals, we tend to judge every move.
What if we stopped looking at everything as negative behavior to be controlled? What if we looked at it as the child or adult having a rough time?
Don’t take my word for it.
As Ashlea McKay, an autistic adult, says
“An autism meltdown is the complete loss of emotional control experienced by an autistic person. It doesn’t last long but once triggered, there’s no stopping it. Meltdowns are emotional avalanches that run their course whether you or the autistic person having it likes it or not. They can happen at anytime and can be caused by a number of factors including: environmental stimuli, stress, uncertainty, rapid and impactful change and much more.”
The next point clarifies how we can be supportive.
2. Give them time and space to feel safe
In the midst of a meltdown, give them some time and space to feel safe, rather than bombarding them with instructions to complete tasks.
Even if you’re away from home, you can find a relatively calm space somewhere.
The idea is to give yourself and your child some space to calm down.
This becomes difficult in public places. But be courageous and let by standers know that you would appreciate being left alone. You can help me during the pre-meltdown phase by being someone I can say “Hey, I feel a meltdown coming” to. Listen to what I’m saying, believe me and help me remove myself from the situation or place. It might mean going outside with me for a walk or telling me it’s ok to finish out the day from home. Again, it really depends on the person. Just being someone that we can flag that with, goes a very long way.
– Ashlea Mckay
For those who can’t tell us about an impending meltdown, keep in mind the next point.
3. Know your child’s signs of distress
What happens before your child becomes totally over stimulated to the point of a meltdown?
Does your child cover her ears? Run out from the room?
Look out for the indicators for sensory overload.
Mohit’s head goes down and he says, ‘shower.’ When he’s at home, we actually help him to get into the shower. This helps him.
If he’s not at home, we know we need to find a relatively quiet place.
Most of my students let me know by a word or a look. I know not to challenge them at that point and just help them feel comfortable.
It’s worthwhile to observe your child and note down the sequence of events as they occur.
4. Continue to work on communication
If your child speaks, work on experience sharing.
If your child cannot speak, don’t despair. You can still teach them to speak using sign language, PECS, a communication board or other forms of augmentative communication.
Viji came to the following conclusion: Then it hit me. This is what happens to Vishal many times. He hurts himself – a bang or a tap or a jab – many times lightly but being highly sensitive it’s very painful- and he loses his self regulation and jumps about in anger/ pain. Words fail him then at that moment and he is unable to tell us what happened. We look at the ‘ outward behaviour’ and think it to be a tantrum/ meltdown for no obvious reason ( as we don’t see any ‘ visible’ reason) and ask him to regulate himself.
Viji (and many of us) have learned to understand and not judge.
In addition we need to follow the other 3 points too.
Give them time and space to feel safe, understand your child’s or student’s signs of distress and continue to work on experience sharing communication.
Kamini Lakhani is the founder and director of SAI Connections. She has been providing services in the field of autism for more than 20 years and is the authorized director of Professional Training for RDI in India and the Middle East. She is also the mother of a young adult with autism.