When JC was diagnosed with autism we had no idea what the future may hold but more importantly we had no real structured plan going forward. We had no idea of what to expect as he would travel through puberty. I have no idea if this is because he was diagnosed at a hospital more than an hour away from our house and as such they weren’t aware of services in our area, or because he wasn’t diagnosed until later meaning they didn’t really have a plan because he had missed all of the early intervention or if it was because he was high functioning and it was perceived it wouldn’t be needed or that resources are so stretched that for the high functioning ones there just isn’t the help.
Either way, that lack of planning has impacted on our family greatly, but especially on JC.
Whether or not a child with autism is high functioning it still means that they face major social and communication difficulties. Humans are social creatures and have a vast array of social rules, norms and cues that are difficult to navigate even for a neuro typical teenager in the throes of puberty, let alone someone on the spectrum.
JC was diagnosed with autism in the high functioning range just before puberty set in. Within 6 months of that diagnosis he had isolated himself to the point he refused to leave the house, and, 3 years later, continues to do so. He will go to school unless, for some reason which can take quite a while to determine, he refuses to do even that. For the most part he lives his life in his lounge.
We have tried many things to get him to engage in life – with us and the outside world. All to no avail. A couple of years ago we spoke to a psychologist about it. All our attempts to stretch him had failed. We wanted to use the only thing we knew would motivate him, his love of reading fan fiction. We wanted to remove it and let him earn it back through social engagement just with us at first but then with the outside world. That psychologist explained to us that his special interest is his safety net and that removing it would create such anxiety for JC it would be torture. We were so shocked and relieved we took professional advice. We definitely did not want to torture our son!
So we returned home and did the best we could. We begged, cajoled, even bribed in an attempt to get him out of that lounge and back into the land of the living. I read lots of books that said children on the spectrum needed to be stretched, given opportunities to achieve and succeed at things which then would build their self esteem – and sport especially was good at this. We tried so many things. I would get frantic as our son refused to leave the room in which he was ensconced thereby refusing any attempt to do such stretching and achieving. How coukd I get him to play sport if he woukdnt leave the room?
(It turns out that the advice given to us was in fact incorrect but another post on that will follow)
Yesterday was a horrible day. It rained and hailed with gale force winds all day. Going outside was impossible. It’s school holidays. As the day progressed with me pottering and JC in his boxer shorts, under his blanket, reading his fan fiction, I got more and more depressed. I felt like we were living two seperate lives. I ached for a”normal” relationship with my teenage son. But instead I took him his food and drink throughout the day, he would say thank you and we would go back to our seperate lives under the same roof.
I thought about those parents who had the benefit of early intervention and, to be honest with you, I resented them. I was angry at the doctors who refused to acknowledge something was wrong when I took him to then at age 2, 3, 4 and 5, I was especially angry at the ADHD specialist who took our $2000 to assess our son because the said previous doctors refused tohelp us, and cameback witha diagnosisof ADHD/ODD only to be told 6 years layerit was autism. I resented and became angry at all that time we had missed whet he would have benefited from therapies such as ABA and social stories, where we could have been building his confidence instead of crushing it with behaviour modification that advised for kids with ADHD. Studies show that the earlier the diagnosis, the earlier therapy begins, the far better the outcome, the better chance of an independent life.
I was once told that research has shown that wherever you are at at the age of 25 is pretty much where you will be for life. He said that this means of you are independent, working and socially integrated at 25, this is how you will be for the rest of your life barring a major catastrophe. If you are living at home and not socially integrated by then, the chances are you won’t ever be. Now, I haven’t read the study so I have no idea how the study was conducted, what the hypothesis was and how it had been extrapolated to the wider community. Either way it has scared the crap out of me. JC is 15. We have 10 years to improve his chances of living an independent life.
Motivated by thinking of this study, I sat next to JC in his lounge. He was playing PS3.
“Can I play with you?” I ask.
“Mum, youre a pacifist.”
It’s true. I abhor killing and war and am very vocal about it. War is unneccsary, especially the wars being fought today. I admire Gandhi and Buddha. My kids know this very well. I looked at the game my 15 year old was playing. Dead bodies were lying every where.
“JC do you have to play these games? ”
“It’s just a game mum. They’re not real bodies. It’s pretend. ”
I sigh. At least he is aware of that. He once tried to reassure me he wasnt about to go around killing anyone. Such a relief.
“Well, can I play with you?”
“I prefer to play alone.”
The 2 second conversation took place with me sitting next to him and him continuing to play.
I once read that to engage with someone with autism you need to take an interest in what they like, in their special interest. I have tried, on Lord have I tried. Nothing has worked. Yet again, I walked out of the lounge defeated.
By the time Dee got home from work he could see I was down. He asked why and I told him. We wondered, as we had many times in the last three years since his diagnosis, how on earth we could stretch JC past his comfort zone. We had no idea.
Then we got a text from a friend inviting us all to the footy final on Saturday. They are one of a handful of friends who totally get our family and accept us as is. Dee’s team is in the final, JC’s team isn’t. We went into his lounge and asked if he would like to go.
“Sure,” he said.
We looked at each other. We couldn’t believe it.
“Swans arent in the final,” Dee said. He wanted to make sure JC understood he wouldn’t be watching his team but Dee’s.
“I know, but it will be fun watch Fremantle whip the Hawks’ butt!”
Dee and I laughed. Dee made some joking quip about Fremantle being a rubbish team to which JC replied that Dee’s team is still going to get whipped. We left the room.
We got to our lounge and sat down. Tears started streaming down my face. Dee put his arm around me.
” There’s always hope my love. Always hope.”