My parents never could have filled out those evaluations

family with parents in focus and kids in blur

So, this showed up on Twitter a few times in the past days:

Sex Differences in Parent-Reported Executive Functioning and Adaptive Behavior in Children and Young Adults with Autism Spectrum Disorder

Emily I. White, Gregory L. Wallace, Julia Bascom, Anna C. Armour, Kelly Register-Brown, Haroon S. Popal, Allison B. Ratto, Alex Martin, and Lauren Kenworthy

This study is the largest to date examining executive function and adaptive skills in females with autism spectrum disorder (ASD). Its primary aim was to utilize parent ratings of real-world executive functioning and adaptive behavior to better understand whether females with ASD differ from males with ASD in these areas of everyday functioning. We compared 79 females with ASD to 158 males with ASD (ages 7–18) who were statistically matched on age, IQ, and level of ADHD or ASD traits.  . . .  Females were rated by parents as having greater problems with executive function on the BRIEF. Parents also rated females as exhibiting more difficulties than males on the Daily Living Skills domain of the VABS. There was a correlation between increased global EF difficulty and decreased adaptive ability in both males and females. Our results indicate relative weaknesses for females compared to males diagnosed with ASD on executive function and daily living skills.  . . . These findings indicate specific liabilities in real world EF and daily living skills for females with ASD and have important implications for targeting their treatments.

While I do think it’s helpful to actually be studying girls on the autism spectrum, I honestly have to wonder how accurate the parents’ view of their kids is/was. I know that my parents had some very strange ideas about what was going on with me, as a kid. I was under constant pressure to perform to their specifications, and when I succeeded, I became even less visible to them — because I wasn’t failing to comply with their (unrealistic) expectations for me.

Of course, I was usually in trouble for one thing or another, and that didn’t help my executive functioning at all. I remember many a time when I simply couldn’t finish a job — or start a new one — because of extenuating circumstances. I got overwhelmed. Blinded by the bright sunlight. Loud sounds like the vacuum cleaner hurt my ears, so I couldn’t do that chore on Saturday mornings. The smells of bathroom cleaners nauseated me, which made me work slower — and appear less capable. I screwed up things left and right because of my sensory issues and general state of overwhelm. I was always tired. I used to go to bed before 10:00, while all the other kids stayed out late and played. I was exhausted. All the time. There was no way anybody could get an accurate reading on my abilities, because I rarely had the opportunity to function when I was at my best.

And certainly never under conditions that I chose and could control. I was always forced to operate in situations where I was at my worst — and then I caught sh*t for not living up to everyone’s expectations. I get tired, just thinking about it.

I have to seriously wonder about the ability of parents to estimate their daughters’ capabilities, because of my experiences. I know I’m not alone in this. So many of the expectations of girls are unrealistic, from the foundation up. When you’re different, that doesn’t necessarily mean you’re disabled. Or that you should get some sort of intervention to make you more compliant. It may actually mean that you’re under more pressure, which means you have fewer resources to devote to executive functioning or figgering out WTF people expect of you. But because it looks so easy for the other girls, you’re compared unfavorably, time and time again.

I wish I could see the exact measurements, to see how the girls were graded. I also wish I could see the conditions that each and every one of the girls were living under. Not that any of the parents would have been neglectful or abusive (though that can be in the eye of the beholder). Rather, are the living conditions of those girls inherently more challenging than ones faced by boys because, well, they’re girls?

Or maybe they’re biologically female and/or gender-assigned as girls, but they’re actually non-binary or they’re “little transmen in the making” (please don’t burn my house down for using the wrong terminology – I’m trying to be playful, fer Chrissakes). Wouldn’t their gender differences / struggles have an effect on their presentation and/or abilities as well?

The authors of the study seemed pretty well aware of these kinds of limitations (bold emphasis is mine):

It is necessary to recognize the limitations of this mainly exploratory study. The measures of both EF and adaptive ability are based on parent report and lack the additional input of other adults in the participants’ lives, the participants themselves, and reliable lab-based tasks. Although this study does not provide indications of the etiology of these differences (e.g., whether parental bias based on sex-specific expectations for these skills drove sex differences), it is notable that the differences in adaptive behavior and EF in this study were found on measures that are either sex normed or derived from a balanced male:female standardization sample. It is important to recognize the possibility that utilizing norms based on typically developing youth could mask ASD-specific sex differences.

and

Like others in the field, we have conceptualized individuals in a binary way (male vs. female) when in fact there could be many more profiles, or possibly no difference in profile, as we include those who are transgender and gender nonconforming. Given high rates of gender variance in people with autism [Strang et al., 2014], it is important to include these underrepresented groups in future research.

Given the present findings and input from selfadvocates about the propensity for females to compensate for social and communication deficits, increased clinical and research inquiry is needed into distinctive cognitive and behavioral phenotypes in females with ASD. This study also makes clear the importance of evaluating functioning outside of ASD-specific symptoms, into related domains that have major impacts on quality of life and overall daily functioning. Also, paying particular attention to . . .  getting the complete real-world picture of a female’s situation.

So, that’s good. It’s always nice to have researchers see that part of things more clearly… unlike other research I’ve read lately, that actually used their limitations as a justification to follow their in-my-view-deeply-flawed line of reasoning… straight to the clinical cash register.

Ultimately, though, I do think research based on parental observations is… tricky. Especially if the parents themselves have blurred vision from their own issues or limitations. What parent doesn’t have their own “baggage” to haul around? And what parent isn’t at least a little blinded by the hopes / ambitions they may have for their kids’ maturity? Especially with girls.

Yes, especially with girls, our variations so often get called out as deficits. Our differences are punished socially and personally — sometimes severely. After all, we’re females. We’re supposed to be the culture-carriers of the human race. If we fall down on the job, what hope is there of humanity’s future? I’m only being partly facetious. That line’s been laid on me so many times in my life, I can’t even begin to say.

I just wish I had counted all those times, so I’d have a good body of data to refer to. Sources. Citations. And so forth.

Well, anyway, at least this paper is a step in the right direction. The authors weren’t total jerks about their work, which is very heartening. And while I do differ with some of the conclusions drawn — mainly because I don’t feel extenuating circumstances of the girls’ lives, including gender expression pressures and social costs exacted on a daily basis, could have been factored into all of it — it’s still a start.

And when it comes to women and girls on the autism spectrum, we need more of that.

You can get limited access to the original paper here:  http://onlinelibrary.wiley.com/doi/10.1002/aur.1811/epdf?referrer_access_token=IW-FAuQkXF-Jxngb3PBDD04keas67K9QMdWULTWMo8PywqLXap6ih90kEZ-P27CZbOh6WHDJJ9cl-95q-zflFMvQ-ylh56ypdC-QI1mkdMqs5SH5iJvPXtLg0fz7PmVx5JoFIUbNE31_xC9OnsH2NivXjmjuI9Ly6KpvW7j-c_lU0mr0kstMuzyfToIfswF-PnGiMfLrT3RjDDSgwhdUBA%3D%3D

I do recommend you give it a read, if you’re so inclined.

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8 thoughts on “My parents never could have filled out those evaluations

  1. Agreed! My dad would have been clueless because he was a workaholic, but my mom did fill out some assessments back when I was going for my formal DX. My mom was very involved as a parent (but not excessively so 😊), but her long-term memory has suffered greatly for reasons you know 💞. And to be complete, she and I hadn’t lived together for the last 20+ years, so she wasn’t aware of how I am now. 💙💜

    Liked by 4 people

    1. VisualVox

      I think perhaps grandparents could be better judges of how kids are doing. They could also have a better perspective, because they wouldn’t plunge into personal crisis about the kids not being “the way they’re supposed to be”. I think modern parents have so much pressure on them, they literally cannot think clearly. It’s that danged sympathetic nervous system frying their ability to think deeply and be objective. Plus, grandparents have the benefit of knowing that things actually can turn out okay in the end. I think parents are far too much on high alert, these days, from all the existential pressures.

      Liked by 1 person

  2. Aspetrix

    My mother & her mother before are both ASD too but with no formal DX. This means expectations were skewed in my house! (Taking a week off school to hide in the dark reading was considered OK). It was great having these adaptations BUT it skewed my idea of ‘normal’ for myself & my own kids for years. Summary: it’s complicated!

    Liked by 5 people

    1. VisualVox

      Wow, that would have been great, to be able to take a week off and hide in the dark reading… my Aspie-fied family was hyper-normalizing. Standards to uphold, and all that. Pain and suffering was beside the point. There was always religious feeling to take the edge off. I realize more each day, the more distressed I was when I was a kid, the more religious I was. This isn’t a criticism of religion, just recognizing the role it played in my life.

      Liked by 1 person

  3. While very young children can’t fill out surveys, teens and adults can. It may be worth asking the researchers if they are doing a follow up study with adults. As an #actuallyautistic person, the researchers may be interested in what you have to offer. Some researchers love emails from people who take time to read their work, and will email back.

    I too am sound sensitive to vacuum cleaners, and find sudden noises also throw me off.

    Liked by 1 person

    1. VisualVox

      I believe some of the kids measured were in their teens – ages went up to 18. It would be interesting to see what the grandparents would say about the kids. I think maybe they’d have a different view, perhaps less skewed in some ways. Just a thought.

      Liked by 2 people

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