I have worked extensively with kids and teenagers on the autism spectrum. All across the spectrum. (And I do, fully, passionately, with my whole heart, believe that there is quite a spectrum — not just of autism but of “neurotypical” too — more on that in the future.) And something that has hit home to me lately is the damage that teaching “rules” can do.
Without disclosing confidential information, I will just say this: I am working with a teenager, who has Nonverbal Learning Disorder. She also has a myriad of other mental health diagnoses. Having NVLD means that some of her struggles include understanding and interpreting someone’s intent, the “why” behind their actions, etc. She is at the point where she is great in hypothetical situations, but when she’s “in the moment” it’s much harder. She has an extremely traumatic background. She brought it up the other day when we were talking about different social situations and the ways to say your own opinion (a big fear of hers is that she will offend a friend, or other person, if she shares her point of view). And she started talking about the person who had abused her, and said, “He was my [family member]. He was in charge. You have to listen to what [family members] tell you to do, so I had to go along with it.”
And it really struck me. With so many neurotypical kids, rule-following is a “must.” So throw in a few other diagnoses of trouble understanding social situations and reading intent, and knowing what to do, and it’s a mess. When she was little, just like so many other kids, she heard, “Parents make the rules,” or “You have to listen to teachers,” etc. It’s so easy to give rules like that, because they are true almost all of the time. But we HAVE to teach our kids that there are times to break rules. That, “if you feel unsafe, uncomfortable, or not good, it is okay to break the rules and talk to someone else about it.”
I know this is an extreme situation, which is why it’s really upsetting me. But it applies in other ways too. With any rule. One rule is “don’t cross the street when the light is red.” Well, we also have to teach them, “But if you’re in the middle of the road when the light turns red, you can keep crossing.” We have to teach the exceptions to the rules. Which is also why I like to call them “guidelines” more than rules.
4 comments
Insightful.
Hi- I’m fifty-one and just got diagnosed with NVLD. I haven’t found a therapist yet, but I believe I’m close. I can say without a doubt that NVLD has screwed my life up. Poor grades in any subject that has math, horrible timing in conversations and just about everything else in life. I used to joke my autobiography would be called ‘Great Moments in BAD Timing’. Now I know why.
When I was in fourth grade I ran away from home. I got in trouble in reading and math class because of the NVLD. I was too good in reading and too bad in math. My dad assumed (as did everyone else) that I was just lazy and seeking attention. Long story short, I too interpreted the rules as being inflexible and just couldn’t deal with it. When I was found I went to a child psychologist and it turned out I read on a ninth grade level. I was accomodated by helping the janitor empty garbage cans and skipping the read out loud part of class. So now I was a ‘genius’ who still couldn’t do math. I was labled as lazy, selfish, and an attention seeker all because of NVLD.
I could go on and on but I’m sure you can guess that my head has been a mess for a long time because of this. It sucks.
Hi David,
I can’t thank you enough for sharing your story. It must be so frustrating to have had people misunderstand you all of these years, and to be labeled in such a negative way when it was a neurological thing going on, not a behavioral problem. How are things now? Is the diagnosis validating for you? Best to you…
Hi- The diagnosis has been quite cathartic and yet oddly disquieting as well. Hearing that the right side of my brain turned out half baked is rather weird but it does explain so many problems I’ve had over the years and I am still adjusting. I guess the worst thing has been my interests regarding education and vocation have been beyond my capability. I’ve been going to college off and on since 1982 and have not finished a degree because I haven’t been able to get past pre-calculus and chemistry. Now, with the diagnosis I am told I can get accommodations for those classes, so I’m thinking about going back to college, but it is hard for me to reconcile a verbal IQ of 130 versus a non verbal of 82. That is a huge range.
Sadly, I did complete a two year tech school program to be a surgical tech but found I couldn’t do the job because of the NVLD. The visual-spatial issues came into play regarding where instruments were located on my field. At the time I called it selective blindness and hoped it was just nerves. Nope. Damn NVLD again screwing things up. Losing that job is what prompted me to finally get tested. So things are sort of in flux right now as I seek a therapist to help me sort things out. I believed all the negative rhetoric about my lack of character, so I have self esteem issues, anxiety issues, depression issues and I cannot take a compliment because my dad was so good at sarcastic compliments that were actually insults. Between my awful childhood and lack of means job wise I felt having kids myself would be a huge mistake, so I never fathered any.
Blathering on is another facet of NVLD, so I’ve probably said too much. Thanks for you interest, and for helping younger versions of me avoid the hell of having this anchor around their necks. If I can confuse you further let me know. (ha!) David