I’ve always been very tactful, I’ve never played “my pain is worse than your pain”. But I’m tired. It’s time we all got real.
I have two kids on the autism spectrum. One has mild Aspergers, the other much more severe Aspergers. Parenting these two kids is like night and day, but with each of them I face different issues than parenting neurotypical kids.
As the saying goes “To know one person with autism is to know ONE person with autism.”
My kids are different from each other, but they share a few traits. Neurotypical kids are diverse, so are kids with autism. But not in the same way as neurotypical kids.
My point? Parenting kids with autism is harder in part because other parents have no idea of the situations that parents of kids with autism have to face and navigate, and just don’t relate.
I have never had understanding friends who listen to my experiences and difficulties in parenting kids on the autism spectrum. I have never had that support, or anyone I can talk to when issues arise. And with kids on the spectrum, issues arise frequently. And it makes parenting a very lonely experience.
So I’m writing.
Here’s my problem. My 18 year old son is going clubbing tonight for the first time.
My ‘friends’ have always been more interested in talking about themselves, and when I raise an issue they take it as an invitation to tell me about their kids, and give me a one liner sound-bite parenting advice as their token acknowledgement that I ever spoke.
Do you all know what a ‘Karen’ is? Karen is the archetypical self-absorbed female of my generation.
The saying goes she is “45, mother of three. blonde. owns a volvo, demanding, annoying as hell. Wears activewear 24/7 and she’s currently at your workplace speaking to your manager.”
This is what Karen would say when I confide in her that I’m worried about my son going clubbing.
“Well, just don’t give him money. When my son first went clubbing…” half an hour of talking about herself.
Yeah, no I can’t do that. You don’t understand the problem. I want him to experience the world, not hide away in his bedroom. I want him to have a good life, gaming in his bedroom all day every day is not it. I want him to have friends, and have fun with them, doing what every other 18 year old young man is doing.
But here’s the thing.
He does not like loud noises. He does not like crowds. He does not cope with strong smells. He does not cope with flashing lights. He has never had a lot of alcohol, and he believes that alcohol doesn’t affect him. And when he melts down, it’s a nasty experience for everyone. And if he melts down without there being someone who understand and can support him, things could get very ugly. And I’m worried for him.
Karen again reiterates that she wouldn’t let him go. And starts talking about her other son with the moral of the story being what a great parent she is.
Completely unhelpful. This is why I don’t go to Karen for support. As always, its much more complicated than that. And I can’t use a simplistic ‘solution’. I need support, someone to talk to, someone who will listen. I don’t want to hear about your kid, I need to talk about mine. I need to talk because while I’m talking I’m reducing my own anxiety and working through the problem. Karen’s job is largely to just listen. Ask a few questions. Not fix anything, just be there. Maybe learn something and empathise if they can.
The solution is not to keep my son at home.
My son wants to experience what all his friends are experiencing. He wants to be included. He has longed to be included for almost a year now. As all his friends turned 18 and went through this rite of passage, and more and more of them joined the ‘clubbing’ crowd, he felt more and more isolated and excluded.
I know exactly how that feels. My heart has been breaking for him. To be excluded and isolated on the basis of your disability is a cruel experience. It’s ten times worse watching it happen to your child.
So finally, a friend invited him along. He lit up. He’s excited. He’s included!
He’s anxious. What to wear? How much money does he need? How much alcohol should he drink? He doesn’t know the basics. He doesn’t follow fashion. He doesn’t look like the other guys. He doesn’t act like the other guys. He stands out.
This is where it starts to get complex. He has had alcohol before, at home and a few drinks at a friend’s house. He doesn’t believe alcohol affects him at all. But it DOES. I’ve watched his behaviour change, but he can’t see it in himself. And because he can’t see those changes, he can’t comprehend the dangers, the risks, the situations he might get into that he is unequipped to handle.
Generally, alcohol releases inhibitions, makes people more social and sometimes more ‘honest’.
My son is socially impaired, as people with autism generally are. He is often socially ostracised because he has behaved in an inappropriate way or said something inappropriate. He’s often upset someone with a blunt comment and people see him as rude.
Can you imagine what a kid who doesn’t realise what alcohol does, or how it affects people or how it affects him, can you imagine what that kid might say? To his friends, fine. But imagine he insults a complete stranger who is drunk and drugged up, and potentially violent? What if he says the wrong thing to the wrong person, having no idea what he’s saying or doing?
Yes, that’s how mothers’ brains work. Think of the worst-case scenario and then try to mitigate that.
So tell him not to drink too much. Don’t give him enough money to drink too much. Fine.
Not prevent him from going, because he has a right to experience the world his friends are experiencing. My son is a good kid. He’s one of THE most caring and empathetic people I know. But he also says brutally honest things that take some getting used to.
He’s not like the other 18 year old guys. He does not like getting drunk, he’s approaching this as an experiment. He does not chase girls, he does not want to have sex with as many of them as possible. He only wants sexual contact in the context a loving, long term relationship. Trust me on this, I know this to be true. He does not do drugs. He never has and I doubt he ever will. I have to remember to tell him to NOT leave his drink unattended. Not even with one of his friends. Yes, I can imagine terrible scenarios. Yes, I know they won’t happen. But I’m scared.
He doesn’t cope in loud, crowded environments. He hates loud music. I know, I said that. This is my worried brain cycling through the reasons he shouldn’t go. Again.
Clubbing, logically, is not something he will enjoy.
But here’s the big one.
My son can’t drive. And he can’t catch buses. And he can’t get an uber or a cab.
Why? Autism. We’ve been working on all of those things for years. He can’t do it.
Buses are his first choice, he has caught buses with friends. But at that time of night, I don’t even want him to get a bus on his own. He will be a target. In the early hours of the morning I do NOT want him alone in the city, on a bus or otherwise.
There probably aren’t even buses running that late.
He can’t get an uber, because he doesn’t trust strangers. Cabs are slightly better, but he’s still too anxious.
The only solution is for me to go pick him up. Sometime between 10pm and 2am, depending on how well the night goes.
I am always asleep by 10pm. I always have a glass or two of wine to help with pain in the evenings. I always take a solid dose of pain medications to get through the night.
I will not be able to do any of those things, otherwise I won’t be able to drive the 25 minutes into the city to pick him up.
Its something I simply should not do. It will be hard on my body, and probably not so safe.
But it’s the only way.
Make him get an uber you say.
He can’t, I told you. You don’t believe me.
Can you run a marathon? Right now? Get up and run about 26 miles?
Of course not. That would take months, or even years of training.
It’s the same with my son. He can’t get an uber, he hasn’t completed the training yet, he has not mastered those skills.
What would Karen say?
“If he wants it bad enough, he’ll just have to get an uber home. Just make him do it! You’re spoiling him!”
He’s not being ‘difficult’. He is not ‘spoilt’. He has a disability. One that few people bother to learn about and understand.
Picture a child who had an accident and currently can’t walk. They’ve been doing their rehab, but it’s taking longer to relearn walking. They are in a wheelchair still, a year longer than first expected.
Would you put their food out of their reach, and starve them? Cos if they wanted it bad enough they’d walk?
No, you wouldn’t. It would be cruel.
People are happy to be cruel to kids with autism though. People like Karen believe that kids with autism are just normal kids being naughty. And therefore they need to be punished and treated like naughty children.
It’s ignorant and cruel. You can’t punish the autism out of someone.
The only solution is for me to go to bed early. Rest. And when he calls, I wake up and go and get him.
Chances are I won’t be able to sleep anyway. I will be worried. I will be lying awake, meditating. Resting my body and mind. Working though the pain. Until its time to go pick him up.
And he will have a great night. He will experience the things he’s been longing to experience. And whether he enjoys the drinking and the clubbing or not, he will enjoy that he got the opportunity to experience it. He might go again, and I might have to pick him up again. Or he might go back to a mate’s house, in which case he can get a bus, an uber or a taxi, because he’s not on his own. Eventually he will be able to go out and get an uber home, on his own. The only way he will ever get those skills is if I support him now.
I wish he had a good friend who could take him under their wing, and look out for him, and make sure he gets back to their house safely. Way back when I went clubbing with my friends, we always crashed at eachother’s houses so as to save on cab fare. That doesn’t seem to be the way it’s done anymore. I don’t know how his friends are getting home. Doesn’t matter I guess.
To be clear, I’m not complaining about my son. I’m not complaining about having to deal with this.
I’m worried. I want the best for my son. I want him to have a typical life, I want him to have the opportunity to do typical things. I want him to be happy. I want that more than anything.
I’m going to make sure my son gets this experience. All parents worry when their kids start going out into the city and drinking. I’m worried, I’m anxious, for a great many reasons. Some to do with his disability and some to do with mine. But he deserves this. He deserves to have a full life. He just needs a little more help. And if its physically possible, I’m going to help.