My son is almost three years old. He has the longest thickest lashes of any child I have seen. I never notice them much but women seem to comment on them all the time. These much envied lashes rest on top of two enormous green eyes that gleam with his smiles and shimmer with tear soaked rivulets when he cries. Yesterday evening a woman complimented him on his lashes at the park. She think he'll turn out to be a stunner. I take him to the park after daycare when the weather is good.
That evening he played ball with the other children. He shook with excitement when he swooped in to kick the ball and flapped his hands back and forth rapidly. The other kids played with him and he will either kick the ball or pick it up and gently deliver it back to its owner. The young soccer player who owned the ball thought he was a sweetheart.
After two minutes of play the other kids continued playing but he broke off and went to a bush alongside the perimeter to tickle it with his hands and feel the leaves brush against his face. He's big on sensation. Sometimes he hurts himself and doesn't seem to register the pain. He would hug and embrace the branches and crouch down in the quiet darkness of a cavity inside the bush. There was silence for about a minute and then I heard a gentle whisper "Dada, here... Dada." I crouched down to join him and he would gave me a kiss on my face and then a light switch went off in his head. His body tensed up with extreme excitement and shook - he squealed with delight and returned to playing ball for one minute with the children - then back to the bush for two - then back to the ball.
He's three months short of three years old. He just started putting words together into phrases. Almost always one of three or four verbs and a single direct object or indirect object. Lots of pointing. Lots of gesturing and grunting still. I can remember I was so happy when he did put together a phrase - so relieved - I still am.
In the bush I heard a quiet whisper "Go... swing." I need to carry him to the swings because his feet are too sensitive to the sand. I plopped him into the seat and pushed him - his eyes glazed over fixed somewhere into the horizon as he settled into his zone. He doesn't really smile or laugh when I push him - well very rarely - but he will get upset when I stop. In the silence I thought of a half an hour earlier.
I had gotten home and checked the mail and there it was. The official ADOS report diagnosing him with being firmly on the ASD (Autism Spectrum Disorders) scale. The results weren't a surprise. The psychologist had already shared them with us weeks ago and they only confirmed something we had suspected for months. My wife knew since almost the beginning. This report is the ticket to important and urgently needed government funding for speech therapy, socialization skills and behavioural therapy that apparently do wonders if applied early on - if they are applied within this critical window.
He's one point shy of the cut-off for autism which puts him in a highly functioning mostly undefined nebulous region that could be pretty much anything. The spectrum is broad and varied. No two kids on it are truly alike. When I see other kids with full blown autism, I can't help but feel lucky that he is where he is on the spectrum - then I feel a little guilty for taking this comfort at someone else's expense. It's selfish but I can't help it.
Today I started thinking about how it might have been like if I had remained Catholic and had to deal with this. To the very bottom of my heart I am happy that I do not believe in the existence of any god. I honestly don't know how people of faith can deal with situations like this - but the closer I go to the spot I was at when I believe in faith the more pain and confusion I feel inside.
What would I say to myself knowing that there is someone out there who caused this to happen or let it happen. Someone who knows why it happened but doesn't care to share this information. Who would I blame? Myself? God? No, it couldn't be God's fault.
If God existed and is all-powerful, what are his motives here? I really wonder how religious people handle this. Do they start out confused or angry at their god and then, through exhaustion, lose the strength to hate and move on to forgive and then eventually start equivocating? It's a special gift. It's to give us strength. God has his purpose. He will be cured in Heaven. Would he be the same little boy in Heaven?
I don't know. But something I do know is that if God did exist I would despise him with all my strength and demand he help my child.
I love this child with all my heart but I would change parts of him if I could. I would improve his speech, I would help him along socially, remove his compulsive oral fixation that causes him to eat all kinds of crazy things. I would strengthen his coping mechanisms. In short, I would do what I will do - give him the best help science can provide. What parent wouldn't? If God existed he would be the cause of the problem, not the solution.
The materialist Atheistic understanding of reality relieves me of confusion and brings me the comfort of at least knowing what wasn't the cause. It wasn't the act of some big mysterious God. It was the result of natural unthinking processes.
Now I don't have as many questions that can never get answered. I have nobody to blame, nobody to question, nobody to hate. I have nobody to petition those long nights - pleading for a miracle or at least some progress. I have nobody to fall back on but myself, my wife and the team of professionals we shall amass around this little guy to bring him to his full potential. It is not a god that will help him be all that he can be ever in this only life he has to live - it is us humans. I am doing what fathers do, my wife is doing what mothers do, we are all doing what humans do.
He has had enough with the swing and I let him run around the park for another five minutes before putting him in his stroller to go home. He screams bloody murder for five minutes and then settles down with the rhythmic thud of the concrete sidewalk blocks moving under the wheels. I let him walk up the stairs into the house - he's so proud of this and I am too! - and I bring him into the bathroom. I begin to wash the dirt from his feet with his washcloth. I realize that for the first time he actually walked on the sand himself for awhile in the park. It's a small achievement but an achievement nonetheless.
He reaches out and takes my head with his hand and looks into my eyes with a mischievous grin. Pulling my ear to his mouth and leaning forward at the same time, he begins to whisper little noises into my ear. Not real words, just whispering noises. I think he saw this in a cartoon recently - we both enjoy playing this little game. When he's done whispering his secret he crouches down with his hand on his mouth, giggles and says Shhhhhh! We both laugh. I love this charming little guy - I love him as he is.
Then I feel something wet on my arm. He smiles and says quietly "Clean Dadda". As he rubs the wet washcloth on my arm I realize he's cleaning me.

While I don't have an autistic child myself, I do come from a family with several of them. I'm happy to see that you are not treating this as some sort of a handicap (unlike some of my relatives). Yes, your son will need some extra help along the way, but he has every chance at becoming a happy, independent adult with your help.
ReplyDeleteOne nice thing about science is it does give us a bit of a window into the future. The UK did a large population study a few years back, aiming to identify autistic (and other people with mental disorders) in the adult population. The good news from that study is something everyone should know - despite the difficulties autistics face early in life, the vast majority end up the same as everyone else - employed, married, 2 kids, a dog, a mortgage, and most importantly...happy.
Thanks for your comment Bryan! So far we have the opposite situation - none of my relatives and few of my friends think there is any problem at all. They all either don't know what ASD and autism is or refuse to believe he has it. My parents are adamant that "labelling" him as having it will somehow make it "true".
DeleteThe way we see it he has some issues that we will work on using the scientific therapies at hand. Our psychologist told us that with these aids he may be practically "normal" (whatever that really means) at age of 6. By then it may have been that they misdiagnosed - but it may also have been all the work done. But in the end - who cares as long as he's happy and functional? In short none of the therapies (like speech therapy can do any harm - they can only do good).
Do you have this study or a link to it? I would be very interested! You know what they say about "engineer fathers?" My father was a librarian and I am in software development. Now that I read the common symptoms of mild autism or aspergers I can actually *see* a lot of myself, my father and even odd social behaviours in my grandfather!
Our psychologist told us that with these aids he may be practically "normal" (whatever that really means) at age of 6
DeleteThat is what happened to my cousins two kids - they were much like your son (slow to learn speech, very tactile, interactions with others were normal - but they'd loose interest and wander off). Her kids are now 6 and 8, and by most standards, seem totally normal. She has to help them a lot with their school-work though, as they remain easily distracted.
So far we have the opposite situation - none of my relatives and few of my friends think there is any problem at all
You are lucky. I have a large family (between aunts/uncles, cousins & their kids, over 100 people), 4 have autism, and I'd say only a third of the rest treat them like normal kids...
...and, of course, about half of them blame "the vaccines" - I'm an immunologist, it makes me want to cry.
Do you have this study or a link to it?
The main study is:
http://www.ic.nhs.uk/webfiles/publications/mental%20health/mental%20health%20surveys/APMS_Autism_report_standard_20_OCT_09.pdf
The anti-vax crowd didn't like it much. Unfortunately, the authors focus on the negative data (i.e. autistics having less education/income on average, despite living on their own and being employed).
Now that I read the common symptoms of mild autism or aspergers I can actually *see* a lot of myself
Me too - I'm a scientist, and I certainty have some autism-like characteristics. There is even a US software company that hires autistics for bug-testing - their propensity for doing repeated tastks makes them ideal for it:
http://www.cbc.ca/news/health/story/2011/09/22/autism-asperger-work-software-tests.html
Thanks so much for this Bryan! I'll forward both of these to my wife as well! Montreal is full of video game companies. A son of a friend of mine has autism and he wins games in mere hours and then goes back and systematically explores every nook and cranny and finds every single easter egg. So his father thinks he may end up a (very good) game tester.
DeleteYour son doesn't need "Our Father who art in Heaven." He has you. Your report has arrived as well, and based on this post, you are one of the best fathers ever.
ReplyDeleteThanks Veronica, that was very nice! We're moving forward... the little guy is making progress.
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