The Silberman Issue

NOTE: Steve Silberman himself has offered his response in the comments.

I have nothing personally against Steve Silberman.

Steve Silberman’s book NeuroTribes is a solid piece of writing that argues many of the same ideas I’ve put forward on this blog. It’s a book that expresses optimism about our futures. It’s a book that respects us. Silberman did an immense amount of research and it shows.

Furthermore he’s worked hard on outreach to the community. He interacts constantly with us. He’s constantly pushing the cause of neurodiversity. As much as an outsider to our community can do, he’s attempted to do. I respect that.

So it’s not as easy to do a piece in which I have to call out Silberman. He’s not Autism Speaks or a cure advocate. He’s at least on the right side. But I can’t hold my tongue any more on this.

Steve Silberman has become a very serious problem for autistic people. He’s become the de facto voice for the autistic community when he is not a member of it. He has become the person the media cites as the expert on the subject, crowding our own voices out of the conversation. And I can’t lie: I feel he’s at fault in this as much as the media.

Silberman can’t be faulted for trying to sell his book, to be clear. Yes, of course he’s got every right to do so. His book is on autism. I expect him to talk about it nonstop. I talk about my own book a lot after all. I realize that he is trying to make his living.

But early on, the idea that he was a voice for us solidified in the media. I’ve read a number of stories that promote his book as if it’s the definitive tome on our lives. It gets frustrating to see articles treating him as the expert on our lives. It’s something I’ve seen constantly since the book came out and I truly think it’s getting worse.

The issue I see is that Silberman hasn’t really stopped to dispel this idea. He’s gladly spoken up in the expert role. He’s really started to become that voice and it’s becoming increasingly unsettling to me as an autistic writer. While he might be able to name drop a number of autistic voices, there’s no denying he’s still speaking for them.

This is how it always is for us after all. The media doesn’t listen to us. They might if we have an exploitable story like being the brother of a famous writer (John Elder Robison) but otherwise it’s assumed we can’t speak for ourselves. This in spite of the fact that the autistic blogging community is a rather epic one filled with great writers. I’m one of thousands here.

It is profoundly problematic that our representative is someone outside our world. That’s reinforcing the idea we don’t know enough about our lives. That’s simply not true. We know full well who we are. We know our lives. Just because eye contact is hard doesn’t mean we can’t tell you concisely how we live.

Being an ally means knowing that your own voice matters less than those you support. I support causes like gay rights and trans rights. But not in a million years do I claim to speak for them. I know enough when to silence my own voice and let the true experts speak.

Silberman tries to be an ally. He certainly does advocate reading works by us. He shares our thoughts. He heavily cites us on his feed and links to us. But I’m still feeling unnerved by him. It’s frustrating to see someone who occupies this central role who isn’t us.

What am I looking for from him? I’m not really sure. I guess just to know that he doesn’t see himself as a more important voice than us. To see him step back a bit. Less activism would even be fine with me. It’s nice he supports us, but it’s not like I don’t feel a bit unnerved by how loudly he speaks.

I also stress to the media: please find us. We’re out here and we’re yelling. Going to someone who studied us over us isn’t the way to go.

As I said at the start, this isn’t easy to discuss. But it must be said.

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Diary of an Autistic Father: Week 12

Lola is sick.

OK, she’s not got anything more than a cold but she is definitely under the weather. She’s been a bit fussy and upset when she’s awake, which isn’t as often as usual. She’s has terrible sinus congestion and a runny nose that obviously angers her. She coughs a bit. Thankfully her fever has broken.

Still it’s hard on us. Amanda and I love our daughter and want her to be well. I hate being sick and I know she must really hate it. Those pained cries kill me. The look on her face as she just wants this to stop, not yet knowing it will, is agony for me.

There was some hope in how well she did at the doctor. She did have her first sick visit to the dr, a rite of passage for miss Lola. She performed nicely. Everybody likes her after all. She even put up with having her blood drawn.

Mostly she’s sleeping right now. This means I’ve gotten to read quite a bit. I’m not indulging in serious reading mind you. I received $75 in Amazon gift cards which I’ve used on comic strip books and graphic novels for my phone. I’ve been reading a lot of Big Nate volumes, which are sheer comfort food to me. Reading has been a truly nice thing for me of late. This fluff has kept me relaxed and calm. It gives me joy. It helps ease my worry about Baby Lola.

She is healing, slowly. There will be days yet of fuss. But I can help. I’m her daddy.

Diary of an Autistic Father: Week 11

Babies have the simplest hierarchy of needs. 

That’s the big lesson I’m learning from Lola. Her needs are fairly simple. She might get hungry. She might need a new diaper. Maybe she wants to be held. Whatever the case, it’s pretty easy to satisfy her needs. 

I bring this up because it’s a sharp contrast to adult interaction which is baffling and confusing. When I’m trying to satisfy a baby’s wants, I’ve got 4 options roughly. When I’m satisfying an adult, I have 600. The nuance between each is extraordinary btw. And I have to choose the right one. 

It’s for that reason that I’m actually feeling fairly confident in my skills as a parent. I’m on day 3 of solo duty and it’s going great. Lola is being quiet except when she’s fussy and I need to help her. But mostly she’s a chill kid. 

We’ve had a few trips out. She gets the usual attention every time. Trust me, I love having a stranger stop and exclaim “what a cute baby” behind my back. She’s never fussy in public either. Seriously good kid. 

Things are good right now as a parent. I’m feeling a measure of faith in myself. I’m even changing rather dramatic diapers. Will I stay confident? Doubtful. But I’m enjoying the ride right now. Stay chill Lola. Please. 

  

Why the Time Magazine insult matters

I have written about this before. 

The pattern is a common one after all. A major outlet makes a negative comment about Asperger’s/autism. We see it. We rage about it. We get no apology. The anger fades because we’re used to not getting an apology. Then someone else does it. 

This week, it’s Time Magazine and writer Joel Stein who slurred us. Stein did an otherwise amazing piece on bullying on the internet that deserves attention. The problem is in the second paragraph he saw fit to refer to the Internet as a “sociopath with Asperger’s.” In a piece attacking bullying, he bullied an entire group. At no point did any editor step in and say this was a bad idea. I know for a fact the story had to go through several editors. But the contradiction wasn’t caught. 

Again this is nothing new. Perhaps it’s a bit more glaring due to the story. But it’s not uncommon. People who claim to be progressive often think nothing of slurring us. We’re acceptable targets by and large. 

So here’s why I think it matters. It matters because Time is a gold standard in the media. I had nothing but the highest respect for them. They are still important in the media world. Their coverage is serious business.

In just a few words, Time reinforced with their prestige the idea that this stereotype is ok. They allowed a writer to use the image of us as emotionally blind so it’s ok for the mainstream to do the same. The gatekeepers still have power, especially with a story like this. If they approved the term on THIS story then the prejudice must be ok. 

But it’s not. We’re not going to allow neurotypicals to slur us. So it is that the pattern will go. They’ll slur us. But we’ll fight back. Every time.  

Diary of an Autistic Father: Week 10 

This is the last week of Amanda’s maternity leave. On Monday, she’s back to work. 

 

The last 10 weeks have been a real joy for me. They’re easily the most time I’ve ever had with her. Our work schedules have never been the same with her working days while I work nights. We don’t often get to spend any full time together and that’s something I hate. 

I don’t talk nearly enough about Amanda on this blog. We’ve been together for five years this summer and married for 3 in December. She is in every way my partner. She’s completely aware of all that’s wrong with me and loves me through it. She never lets me off the hook but she supports me. Having her in my life is a powerful thing. 

These weeks have only reinforced how I feel. I’ve gotten to bask in her humor as I get ready for work. I’ve binge watched tv with her. We’ve taken a few day trips. Yesterday we went arcading even. 

But the big thing is I’ve seen how she is with Lola. Amanda lives for that baby. She worries about her constantly. She’s at her beck and call. She’s making sure she’s ok at every moment. It’s so beautiful. 

I hate that I’m losing her in this way but that’s life. We must tend to our gardens. I’m just lucky to have her. 

Diary of an Autistic Father: Week 9

This was a quiet week. 

Lola turned two months old with little fanfare save for her two month appointment where it was found she was perfectly healthy. She’s thin but tall so it balances out. At least she would be tall if she was standing. She had her shots. She cried a bit but so did mom. 

She had her first sleepover on Wednesday night in Conway with my parents. Unlike the Delight trip, I enjoyed this a bit more because I had Amanda with me. We went to dinner and a movie and hung out with friends. If this is how these go, these breaks, I’ll take them occasionally.

We had a photoshoot as well. A photographer captured us at the house. There were several pictures of just Lola too. In one she’s a tiny angel. That’ll be one I cherish. 

The big new thing for Lola is expressions. She’s making a lot more. I’ve seen several sustained smiles from my cub and I love them. She’s a bright little figure. She’s focusing longer too. Slowly she comes online. 

As for me, I’m trying to lean into the new normal. I’ve had anxiety and self esteem issues this week. They’re inevitable. I’m treating them though. I take my meds. I know I struggle with these things and I don’t hide it. 

What matters to me is protecting that angel. She’s a sweet little person. Of course I get anxious about caring for her. I want her to do well. So far, so good I think. 

Diary of an Autistic Father: Week Eight

Lola is a fairly good baby all things considered. She’s not all that fussy. She’s fairly easy to get. She loves bath time. She doesn’t cry through the night. 

That doesn’t mean things come easy though. This week, it’s time to look at the adventure that is the late night feeding. 

Lola is a bottle baby so I share duties of feeding her with Amanda. This means that late at night, I have to care for Lola. I feed her. I change her. I get her back to sleep. It’s not exciting or rare, just standard dad duties. 

It’s an experience for me though. For one thing it gives me a new routine. I know at a certain time I’ve got to be up. I change her–future entry maybe–and I make her a bottle. Then I rock her back to sleep. That involves being so still I’m in danger of sleep. Hopefully after that she’s back in her bed. It can take hours though.

It’s the new routine that matters. I never did anything like this 3 months ago. I do it daily now. And no, it’s not better than 6 uninterrupted hours of sleep. I’ve only had one or two true classic lucid dreams and one of them was a nightmare. 

But I have added it. It’s part of the job. And a new addition to routine becomes routine. It’s how it goes. A change soon becomes familiar. Despite our image, we can and do adapt. 

And it’s fun. It gives me a chance to really study her. She eats well so it’s fun to see that small face consume. Her expressions are gold. Then watching her fight sleep is precious. She’s a baby angel really.

New routines are tricky. She justifies them.