In a word: OOF

In the ever-losing game of balancing out the time I spend with each kid so that neither assumes I love the other better—or both of them assume I love the other better, but I feel pretty confident that they are being ridiculous drama llamas—I was thrilled to discover that the day after Chickadee’s birthday, there was going to be a screening of Autism in Love at our local indie cinema.

“Hey Monkey, would you like to go see this documentary with me? I think it’ll be pretty interesting.” I was braced for a shrug or a swift refusal (this would, after all, cut into his gaming time…), but to my delight he agreed right away. (I also invited the rest of the family, by the way. But it ended up just being Monkey and me, which was fine.)

This movie caused me to have A Lot Of Feelings, both because of the movie itself and how Monkey reacted to it. The premise is simple: they follow four autistic adults who are either in or want to be in romantic relationships. Two of them are a couple, one is married (but his wife is in the hospital with end-stage ovarian cancer, and it’s unclear if they ever lived truly independently), and the youngest of the bunch is a young man who really wants a girlfriend but is struggling with… well, everything, seems like, but especially that.

There are highs and lows in the film, but it was the ride home that was most interesting.

“Four people isn’t enough,” he said, first. “Everyone with autism is different. All of those people in the movie were sort of on the same level of functioning. There wasn’t anyone like me.”

This was surprising on two fronts. First: The couple lived independently, both of them had driver’s licenses and “regular” jobs, and struck me as being on the same level of functioning (I hate the whole high- and low-functioning thing, but I don’t have better language for it) as Monkey. In fact, the woman in the couple struck me as VERY similar to him, and I briefly wondered if his inability to see the similarities was because she’s female. Second: The other two subjects in the film were more limited in their functioning (again, sorry for the “functioning” label)—they didn’t drive, their thinking was extremely rigid, and one had a job through an organization employing those with disabilities, while the other had no job at all for most of the film (towards the end, he’d found employment as a supermarket bagger).

The fact that my normally very discerning kid was lumping all four of these adults together was interesting to me.

“I thought the couple was sort of like you,” I ventured. “Her, specifically. What do you mean there was no one like you?”

“I could tell she was autistic when she talked,” he said. “I mean, it was really obvious she has a speech processing issue. I’m not like that.” Huh.

“Okay…” I said. “You don’t have that specific thing, but sometimes people can tell you’re autistic when you talk. If you get excited about something you sometimes drop some consonants and become hard to understand. That’s okay.”

He nodded, but was clearly frustrated that I was missing something. “None of them had regular jobs. Do you think I’m going to be able to have a regular job?”

Ah. Now I understood. “First, honey, yes, I fully expect you’ll have a regular job in a field that interests you. But… I think the couple did have regular jobs—they just didn’t show as much about that because showing the special job, or the complaining about not being able to hold a job, was different. See what I mean? I’m pretty sure both the guy and the girl in the couple had gone to college and had what you would consider ‘regular’ jobs.”

He nodded. We talked some more about Lenny, the one who was single, who seemed to struggle the most through the film. During the screening, Monkey had leaned over to me several times to make comments, as Lenny was outspoken in his desire to not have autism and to be “like everyone else.” Monkey pointed out to me, at various points, that 1) Lenny was clearly suffering from low self-esteem, 2) Lenny didn’t seem to have a very good support system to help him come to terms with his autism, and 3) Lenny wasn’t sad because he was autistic, Lenny was sad because he was clinically depressed. And now he wanted to talk about him some more.

“I feel like I could’ve ended up like Lenny,” he said. “I mean, if I hadn’t had all the support and help I got, and you guys helping me to realize that yeah, I’m different, but that’s hard in some ways and good in others.”

“Really?” I asked.

“Sure,” he said. “His mom didn’t really seem to understand why he couldn’t just snap out of it. That’s not how you help someone who’s depressed. But I remember feeling like that, sometimes. I felt really bad for him. I think if he would stop believing everything he read on the Internet” [Lenny had some interesting beliefs about how relationships work] “he might be happier, too.”

“Well, he’s a pretty rigid thinker,” I said. “That’s… well, you know. That’s a pretty typical autistic thing. You do that sometimes, too.” He started to protest. “Not about the same stuff, of course. But sometimes that same kind of ‘this is the way it is’ thinking, right?” He nodded.

“I think I USED to be like some of the people in the movie,” he said. “But I’ve gotten a lot better at handling things.” I agreed. “I just would’ve liked to see someone more like me.”

Sometimes I wish I could crawl inside that kid’s head and see how he sees himself. I sure am enjoying my little glimpses from the outside, though.

22 Responses to “In a word: OOF”

  1. 1
    Zb April 20, 2016 at 11:21 am #

    wow, what a great discussion.

  2. 2
    Tracy B April 20, 2016 at 11:48 am #

    Know how others perceive you is sometimes very scary. I’m so proud of Monkey and his progress. He has definitely made progress!

  3. 3
    Karen R April 20, 2016 at 2:47 pm #

    Where is a love button when you need one?

  4. 4
    pharmgirl April 20, 2016 at 4:00 pm #

    You’re having an amazing week, aren’t you?

    • 4.1
      Mir April 20, 2016 at 4:08 pm #

      I REALLY AM!

      • Genevieve April 21, 2016 at 1:51 pm #

        Hooray for your week and your fabulous kids!

  5. 5
    Mom24_4evermom April 20, 2016 at 4:07 pm #

    I have to echo pharmgirl. Glad for your week.

  6. 6
    Zb April 20, 2016 at 4:22 pm #

    PS — Google stalking reveals that Dave is a meteorologist and Lindsey an autism advocate and musician

    I hope that I can have that killed nearly of conversation with my teenage boy someday (and he’s neurotransmitters cal). I think some of the explicit discussions about social relationships is really helping with the emergency tonal lives of all boys. Say — the tendency for young men to believe too much of the Internet is not limited to autistic men.

  7. 7
    Zb April 20, 2016 at 4:25 pm #

    Aargh — iPhone autocorrect

    Will post correction on a computer

  8. 8
    Lauren April 20, 2016 at 4:54 pm #

    You must just be so fucking proud of those kids. I’m not sure how you don’t explode from it.

  9. 9
    Chuck April 20, 2016 at 4:58 pm #

    Very interesting post. Very happy for your week of awesomeness. :)

  10. 10
    Jeanie April 20, 2016 at 5:49 pm #

    That Monkey is sharp as a tack!

  11. 11
    Adelaide Dupont April 20, 2016 at 10:54 pm #

    Monkey:

    On the 2nd April in various of our cinemas [mostly the ones that are owned by Village Roadshow – indie cinemas – those who take the time to arrange a public or private screening], you will see people who are a lot like you.

    SPECTROSPECTIVE is the time when we make 15-minute videos about ourselves and how great we are. The 2016 edition is fantastic.

    • 11.1
      Mir April 21, 2016 at 6:31 am #

      We will look for that—thank you!!

  12. 12
    dad April 21, 2016 at 9:43 am #

    We are kvelling here; but please don’t allow your justifiable pride to make you explode; and keep up the great work.

    Please note my intentional use of superfluous semicolons as a tribute to your accomplishments.

  13. 13
    zb April 21, 2016 at 9:49 am #

    I love it when your parents post on your blog :-)

    So, what I was trying to say is that I think the purposeful discussions about social relationships for boys with autism (that I read on the blog, hear about, and addressing them in communities) is helping us learn to talk about the social emotional health of all boys.

    I hope that I can have a discussion with my teenage boy like the one you had some day, and that it’s not all grunts and stiff upper lips and pretending that there is no interior life. I know that it’s not just autistic young men like Lenny who need to have conversations about not believing everything on the internet.

  14. 14
    Rosie April 21, 2016 at 11:26 am #

    I’ve been meaning to mention this for a while, but I wasn’t sure if you (or Monkey) would be interested. The company that I work for, SAP, is a global software company based in Germany. It has a program called Autism at Work, that actively recruits and trains people with autism. If you’re interested, google SAP and autism. Here’s a blurb:

    Autism at Work
    The groundbreaking SAP Autism at Work program integrates people with autism into the workforce. Our goal is to have 1% of the SAP workforce represented by people on the autism spectrum. The initiative currently includes over 100 colleagues and is active in Australia, Brazil, Canada, the Czech Republic, Germany, India, Ireland, and the United States, with plans to add South Korea in 2016. For more information, please contact us.

    Anyway, I’m a lowly technical writer, but if I can help in any way, I’d be delighted, as I’ve “watched” Monkey grow up and mature into a lovely and self-aware young man.

  15. 15
    Chris April 23, 2016 at 8:43 pm #

    For anyone interested this film is available on Netflix streaming.

  16. 16
    Daisy April 24, 2016 at 8:30 pm #

    Wow. Just wow. We recorded Autism in Love, and it’s still on the DVR. I haven’t gotten up the courage to watch it yet. More power to you and Monkey, seeing it together!

  17. 17
    Jamie April 26, 2016 at 2:57 pm #

    What an awesome conversation! Monkey is such a smart kid!!

  18. 18
    Lucinda April 27, 2016 at 2:27 pm #

    I love when I get to peek inside the thoughts of my kids, especially my son because I was a teenage girl once but strangely enough, never a teenage boy. I often don’t understand his perspective and when he shares, I always find it fascinating. Kudos to you that you have been able to keep those lines of communication open so he feels comfortable sharing. Glad you are having a great week. Your post about that tattoos had me sobbing. (In the best kind of way).

  19. 19
    Angela May 4, 2016 at 12:40 pm #

    That’s just awesome that he realizes how his life would have differed if he had been raised in a less understanding family, and has compassion for other people who don’t have that support. I told you a long time ago (I want to say Monkey was around 8) about a boy I grew up with at church, who I now believe had autism/Asperger’s, and probably his entire family did as well. Of course, at the time no one knew what that was and the whole family was just considered “strange”. His older brothers were geniuses at building and repairing player pianos and pipe organs, the kind that play themselves using some kind of drum and punch cards, but they were pretty reclusive and I don’t think they ever left the house much. The boy, his mother and his younger sister came to church regularly though.

    Anyway, I remember telling you that if that boy could grow up to finish high school and get married (and divorced, just like us “normal” folks!), and have a job (of some kind but I’m not sure what) without any kind of assistance or understanding from society of what he was dealing with, that Monkey would be just fine with parents as helpful and supportive as y’all were. It makes me SO HAPPY to see that that was true!!! Yay!!! Your kids are awesome and you have surely been a warrior on their behalves.

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