Why does “social inclusion” play such a big part in intervention for Autism? It’s a no-brainer really. People with autism have significant difficulty in developing relationship/friendship with other people; the preferred mode is isolation.
We Don’t Hate People
We don’t hate people, in fact, many of us love people. We desire to build deep and meaningful relationships with other people. Although we keep talking about needing alone time, we get lonely too, but when the choice is between being lonely or sad and stressed out, we choose to be alone, even if loneliness is part of it.
We Are Not Necessarily Lonely When Alone; People Around Us Are
We get emotionally and mentally drained after having to socialise, even with people we are familiar with. We get emotionally cracked down when we have to fight with people, get yelled at, being misunderstood etc.. Most people just either get over it, or get angry; we get meltdowns.
When we are in a meltdown and/or shutdown mode, we may look very lonely, because we cut off from the world. We are not necessarily lonely at that time, but people around us, who care about us, can feel immensely lonely and emotionally abandoned.
Their feelings are validated. People desperately want to help, it frustrates them that when they throw out the life line from their beautiful and luxurious ship to us, who seem lifelessly afloat on a life buoy, we refuse to grab that rope. It’s beyond their comprehension that we are “giving up”.
Sense of Helplessness
I have been on both sides of the door. People who love us wanted so badly to connect with us, to help us ride through the hard times. They just want to do something to help; it hurts them to be in a position that they cannot offer any help – they perceive our meltdowns as rejections to their help. “Why won’t you come to me?” “Let me help you.” Pain is not always physical. Pain is felt by the sufferer, and people who watch helplessly.
We often leave our friends and loved ones feeling rejected and emotionally abandoned. They are entitled to their feelings; we don’t mean to cause it, but it happens from time to time.
Different Perspectives – Coping Method
Contrary to most beliefs, when we are keeping the world out, we are surviving a distressing crisis. This is the difference between the Neurotypical mind and the Autistic mind.
We may seem to be evading from the problem, but believe me, we are doing our best to deal with a distressing situation. Like I said, I have been on both sides of the door, I know what it feels like to be shut out of the world of someone you have deep feelings for. Knowing the definition of meltdown/shutdown is different from understanding what it is like to be in a meltdown/shutdown.
We look like a lifeless monotone cutout in the colourful world. We could see and feel the winds and colours of the world, but we remain untainted until we recover.
Mutual Understanding Is Overrated
I was once convinced that if both of us are on the autism spectrum, we would be more tolerant and understanding towards each other’s meltdowns and quirks. I am convinced now that it can be harder for a person with autism to be in love with another person with autism. It’s simple logic really. It is extremely difficult for us to form meaningful relationship; we only have a handful of friends. When we fall in love, we have the desire to connect deeply with our partner, and especially that we believe that we understand each other like no other.
Understanding doesn’t necessarily make rejection easier; it can make it harder. Understanding comes both ways. We understand the need for solitude; we also understand the desire to stay connected.
No one should ever, not even those on the spectrum, get to tell another person who gets shut out to be understanding. Feeling of rejection is feeling of rejection, we can rationalise it but we cannot deny the feeling.
So, meltdowns are hard for people in the meltdown and the people watching it. It is like watching a a loved one being burnt in fire and there is absolutely nothing you could do to help, despite the countless of fire extinguishers you have on hand.
Adding Oil to Fire
Sense of helplessness can drive a sane person up the wall, so high up that he/she loses the cool. Sometimes, their responses resulted in misdirected anger. It can escalate rapidly from being loving and caring to angry and vicious.
“Let me help you, please.”
“Come to me, and it will all be fine.”
“Why won’t you let me help?”
“Why won’t you talk to me?”
“What did I do?”
“I am only trying to help!”
“You are such a selfish person!”
“All you do is to hide behind your so-called meltdown.”
“So your feelings are hurt, and what about mine?”
Like an ant that accidentally crawled into your ear, the more you push a Q-tip through ear tunnel, the deeper the ant will crawl in. Sometimes, the most effective way is to shine a light and wait; wait for the ant to work things out and walk towards the light.
Easier said than done, I know. I wish there is an easier way, but there isn’t.
Social Inclusion for Who?
So, when we talk about social inclusion, who is the inclusion for? The people with autism, or people around the people with autism, or perhaps for both. Does it prepare us for the society, or preparing the society for us?
I get anxious in participating in class activities, and my support plan allows me to discuss my challenges with the lecturers and tutors. One of my lecturers recommended that I take the unit as external student (online studies) if participating in class activities is too demanding.
Actually it is quite viable, and when we move this concept to the real world setting, “exclusion” could mean more jobs to be designed specially for people with autism with minimal social participation so that we could deliver more effectively and efficiently without having to struggle with social interactions.
Many times, intervention and resolution are not designed solely to benefit the person with a condition, it is a good exposure for the regular people to a diversity. Perhaps it’s one stepping-stone to building a more compassionate and understanding society.