Autism
My middle son is 19 now. He is autistic. I wrote about him before, and about the lessons I’ve learned being his dad.
He likes to draw. Above is a self-portrait he drew, looking pretty BA. He’s actually a pretty nice guy, even though the drawing makes him look like he’s about to shake you down for that coupon you were going to use for a free ice-cream cone.
Over the past six months, his mother and I have been trying to help him navigate the online relationships he’d developed on a website that allows you to upload and share art and photography. He’s a huge Ratchet and Clank video game fan, and quickly found a group of users that were creating their own R&C fan art. The idea had him all excited at first, but then he noticed group members posting pictures of the video game’s characters in unsavory scenarios. This made our black and white thinking spectrum son very upset.
When he talked to us about it, we told him simply to not look at those pictures, and block those particular group members so that their drawings wouldn’t show up in his feed anymore. This lead to one of the most difficult parts of parenting an autistic child, and leading him into adulthood. He couldn’t NOT say something. He felt like what they were doing was wrong, and that he had an obligation to point it out. In his mind, It was an injustice that had to be confronted.
As you could imagine, pointing out the immorality of others’ drawings, with the grace of a rusty fishhook, only led to ugly backlash. It’s not like the users of the website had any idea of his developmental limitations. They just saw a self-righteous kid passing judgement on them. They cursed at him, told him to mind his own business, and leave them alone. Then it got worse.
I’ve learned that the idea of “leaving it alone” is one that’s impossible to expect from some autistic kids. He escalated, intensified his attack on the unrighteous use of his beloved characters, and (gasp) was blocked by three of his “friends”. Then it got even worse.
To say that he developed an obsession for winning those friends back is an epic understatement. For four months, he lost sleep, shed tears, made heartfelt appeals, and tried every day to talk mutual friends into talking those angry users into unblocking him. In the process, he even lost some mutual friends because they were tired of hearing about it. Everyone was telling him to let it go but he refused.
I told him many times to learn from the experience and move on. His continual pressing the issue online was only stirring up a beehive. He was becoming a pariah on the website. I tried to get people to rally around him and show him how loved and supported he was. I even went on the website myself and asked the group to cut him some slack. It all came to a head when another member of the R&C group posted a long, detailed status update about all of the ways my son had made her hate him. There were over 50 comments on the post tearing him down, cussing him out, and accusing him of being the worst kind of person possible.
It broke my heart.
In the end, I had to block him from the site. His refusal to follow wise counsel was hurting him terribly. Some autistic kids are actually incapable of learning from experience, and unable to anticipate others’ reactions to their words or actions. Imagine the impact that would have on your ability to make and keep friends! It would be like playing chess but forgetting your past moves and only being able to see your own pieces. I asked him if he ever gets confused. He said, “All the time.”
So, from here we’re looking for an opportunity for him to start over, either online or in person. We’re hoping that, against the odds, he will learn from this. If he’s ever going to transition to an adulthood that resembles a form of grownup independence, he’s going to have to learn the skills of extending grace, accepting rejection, and letting go.
It’s a long march to that place.
Autism, Family
Recently, it was my son’s 18th birthday. It really doesn’t seem real that I now have two adult children. Both of my adult children are on the autism spectrum, which poses certain challenges when it comes to leading them to a life of independence. Let’s just say, it’ll be a while before I get to turn one of their bedrooms into a man-cave. To be honest with you, they’re both great guys and I really don’t mind having them around a few extra years.
My middle son (the one in the picture) is the one who just turned 18. I vividly remember gazing at him, when he was born, and imagining all of the wonderful things he would do when he grew up. I still believe he is going to do wonderful things, it’s just that the road to Wonderfulthingsville is going to be more like a winding, speedbump-laden path than a straight-shot expressway.
Now that the boys are both considered adults, I figured I’d share a few things about what it’s like to raise autistic children. With an estimated 1 in 10 children on the spectrum, chances are you have a child, or know a child, with autism. If you have a child with autism, I hope these help.
You wish you could do more to help them make friends.
This has been one of the toughest things for me. My heart breaks on a regular basis when I see my son ignored or rejected by other kids. Autism isn’t a visible, easily recognizable disability so other teenagers just tend to see him as weird or quirky. When they exclude him, he notices and it hurts. At youth group, he usually sat alone and came home feeling sad.
It’s hard for him to make friends online as well. Having a very black and white outlook on life, he’ll usually “call out” people for swearing or inappropriate behavior. As you can imagine, this opens the door for all sorts of negative reactions from people who don’t understand the real person behind the avatar.
Since it’s so difficult for my son to make friends, I try my best to be a good friend to him. I check in on him often, invite him to walk with me, and play games with him. He really is a treasure and I pray often for him to make good friends.
You have to learn a new language.
Imagine living with someone who only speaks Italian. You work hard at learning to speak Italian yourself, but then you realize that the person SPEAKS Italian, but UNDERSTANDS French. Then you have to learn French, but don’t get too comfortable because you might need to brush up on your German once in a while.
The point is, communication isn’t always easy between myself and my son. I’ve learned to ask a lot of clarifying questions before responding to what he says to me. I’ve also learned that I can’t always count on his tone of voice or body language to make things clearer. Unless he’s angry. Then it’s pretty clear.
I have to be patient, listen actively, and talk in ways that do not communicate too many ideas at a time.
Your hopes and aspirations for them have to remain fluid.
We all have hopes and aspirations for our children. We dream of them becoming successful writers, pastors, entrepreneurs, doctors, and missionaries. Sometimes our children don’t want to do the things we dream for them, and sometimes they just don’t have the capacity.
When I heard about Temple Grandin and John Elder Robison, I thought, he could do something amazing! He might. Or he might not. Either way, I’m ok with it. He IS someone amazing and I love him no matter what.
Earlier today, I took him down to the local community college to get enrolled. He wants to be a medical transcriptionist. He has mad typing skills and I’m super proud of him.
You have to take initiative for them.
My son likes to be alone in his room…a lot. He likes things with screens. He likes the computer, the phone, and the television. When company comes over, he goes to his room. It’s not that he doesn’t like company, or exercise, or creativity. He just needs someone to take him by the hand and draw him out.
For many autistic kids, hypersensitivity to the world around them is a problem and there’s comfort in being alone and focusing on a screen to tune everything else out. If he hasn’t gotten exercise in a while, I’ll invite him on a walk. If there’s a fun activity he might like, I have to encourage him to get involved. Sometimes he protests to playing a game or hanging out with the family, but he’s almost always glad that he did.
You have to remember that they are fearfully and wonderfully made.
I used to pray a lot that God would heal my son. I know now that he is just as God wanted him. As Temple Grandin says, “Different, not less.” A disability is a bend in the road, not the end of the road. My son has taught me so much about childlike faith, friendship, and love. Being his father has made me a better person; more caring, patient, and kind.
I wouldn’t trade the 18 years I’ve spent with him for anything. I see Jesus in him. I love the way he worships (he plays bass on the church worship team), I love the way he jokes with me (he has incredibly well-timed farts), and I love his smile. He really is fearfully and wonderfully made.
If you have a child with autism, I hope you don’t grow weary. Keep dreaming for him or her, and be an amazing friend.
