Autistic-like, a.k.a. an odd duck

Yesterday the family went out to dinner to celebrate my husband’s birthday. I got a hearty salad and a half-pound of crab legs. I adore them, even if I don’t dip into the lemon butter as heartily as I once did.

Lei wanted to taste the crab meat, but quickly decided it isn’t for her. However she was fascinated by the exoskeleton and collected all the empty legs so she could examine them. She got particularly excited when I showed her the tendons, and explained how they work the same as ours, but they attach onto the external “bone” instead of internal ones like we have.

D quickly joined the fun and the two of them proclaimed themselves marine biologists, an appropriate calling for a girl who still half believes in mermaids. And her brother, of course.

That is Lei at her best. Connected, engaged, communicating, learning, and enjoying herself.

But she’s not always like that. When she is tired or stressed, she retreats into her inner world. She becomes more impulsive and less communicative. This happens enough that the question of whether she has autism has been raised repeatedly.

And I have investigated whether my daughter is on the spectrum. I needed to put that question to rest for myself. Lei shares many traits in common with the autism spectrum – sensory issues, poor social skills, obsessions – but I at least am satisfied that they don’t add up to an autism diagnosis.

Kids her age with autism don’t have long-term best friends who they share lots of feelings with, don’t rush to make friends with literally every 9- to 14-year-old girl they meet, don’t meet a new friend from New Zealand for a day and a half, and continue to think of her as a close friend two years later.

But being deaf means that she hasn’t been passively soaking up social skills the way hearing kids do. And if she wants to keep on top of what’s happening around her she has to constantly monitor and sweep for cues as to what’s happening. Lei frequently decides that what’s happening in her imagination is more interesting, not to mention much easier to keep track of.

Another piece of the puzzle is asynchronous development, which is associated with giftedness. Lei is way ahead in some areas, way off in others (my family is full of extremely bright non-conformists, so maybe part of that is hereditary). And Lei has areas of overexcitability, meaning in her case that her vivid imagination firmly holds her attention – making it hard to get her attention or make eye contact – and that her perception of other people’s emotions can be intense and cause her to shut down so she breaks eye contact. This makes visual communication very challenging!

Right now Lei is reading a manga series called With the Light, which tells the story of a woman raising a son who has autism. I have wondered what she would make of that.

This morning in the car she told me, “You know, I am learning so much about autism. And I feel like I have so much in common with people who have it, that I think maybe I have it, too!”

Her face was alight with the possibility that she might have autism. I wonder if she felt the way I do, hopeful that maybe there could be one big explanation for why she is so different and struggles so much.

I smiled at her and agreed that yes, she has a lot in common with people who have autism.

“One big difference,” I told her, “is that when you are feeling relaxed, safe and rested, you don’t have some of those troubles, like making eye contact or interacting well with others. When you get tired, you feel unsafe or are stressed, you do have trouble with those things.”

“People who have autism have those challenges all the time, though being tired or stressed can make them a lot worse,” I said, “So I think of you as autistic-like, even though you don’t have autism.”

She nodded thoughtfully, staring out the window. “Austistic-like,” she mused. “That makes sense.”

I’m glad it makes sense to her now, and I hope she will continue to learn about autism. I think it gives her a chance to understand herself more deeply, regardless of whether the label fits perfectly or not.

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7 thoughts on “Autistic-like, a.k.a. an odd duck

  1. I’m autistic and have an easier time socially when I feel comfortable and safe. I had the occasional friend as an elementary schooler, including a long-term best friend. I encourage you to seek out a professional with specific expertise in identifying autism in girls, particularly bright girls. I think that when someone knows they’re different, there’s usually a reason why.

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    1. I really appreciate your thoughts, Christine. Our current understanding is based on evaluation by a professional who has extensive experience with deafness, giftedness and autism. Quite a trifecta, eh?

      I’ve been wondering how important it is for Lei to have an autism diagnosis, if it would help her or what any potential drawbacks might be. What do you think?

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  2. Hi. How amazing to find your blog. I’ve only read a couple posts, but I feel a bit like we are living the same life. I, too, have a deaf child who is gifted. She also has an aspergers diagnosis (technically pdd-nos because she had a language delay due to not not knowing she was deaf until she was 18 months old.

    It’s such a unique position to be in, to be lumped in with a group of kids who struggle with language, yet to be reading college level textbooks by the age of 8.

    I wanted to address something that you mentioned in this particular blog. You said “Kids her age with autism don’t have long-term best friends who they share lots of feelings with, don’t rush to make friends with literally every 9- to 14-year-old girl they meet, don’t meet a new friend from New Zealand for a day and a half, and continue to think of her as a close friend two years later.” This really hasn’t been true in our case.

    Girls with autism precedent very differently than the stereotypical autistic child. My daughter is almost hyper social. I once read that girls with autism are very social and have a strong desire for relationship, but often they aren’t successful in those things. My daughter loves people, but the social skills issues make it difficult for her to succeed in friendships. She would totally remember a child she met in Another country and befriended. She’d remember years later.

    It sounds like your daughter has a very good view of who she is and that is beautiful. You sound like a very strong advocate for her and I know she will (and probably does already) appreciate all the time, love and energy you give in the process. Thanks for the writing it so I can feel for once that maybe, just maybe, we aren’t alone on this journey.

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    1. You’ve given me a lot to think about, Sara, and I really appreciate you taking the time to write.

      My question since writing the blog and hearing from other parents of Aspie girls, mostly hearing, and you (yes, a very similar story to ours!) is this: what are the practical needs that would be met by Lei having – or being thought to have – an autism diagnosis. One thing that springs to mind is that if we tell people she has PDD-NOS, their expectations might be different, and this could benefit her because they might not blame her so much for her quirks and social-emotional delays. What are the drawbacks?

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  3. I was actually about to state something very similar to what the other posters have said, but now there’s no need. They’ve pretty much made my point (about the socialization, relaxing, etc being very different in autistic girls and women than is commonly perceived in males).

    I’m autistic, and so are two of my kids (including one girl). Though I don’t know your daughter at all, she doesn’t sound autistic-like to me; she sounds autistic. But that’s ultimately for your family to determine.

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    1. One thing that has become clearer to me since I wrote this is that autism isn’t one disorder, but a spectrum of communication challenges that may or may not all be related in terms of causality or presentation. Lei is considered autistic by some, and not by others who know enough to have their opinions heard. I think the real question is whether an autism diagnosis will help her. Will it give her a sense of belonging? Will it help her teachers adjust their expectations of her? Will it get her additional services that would make a difference to her?

      What do you think?

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