Susan's Blog

Sunday, August 4, 2013

Presume competence? Or be parental?

What must it be like to so frequently be told what to do and how to do it? It’s one thing when you’re a child and everyone around you is pretty much older and wiser. But when you’re a 23 year old man? This is one of my biggest areas of concern for Nat, a grown up with intense autism. For him basically to survive, and enjoy life, he needs a lot of supervision, adjusting, and fine-tuning.

If the higher-functioning autistics and Aspies are right, I am to presume competence. I am to treat Nat as if he knows in many ways what is going on, what is being said. I am to act as if he understands me for the most part, but just that something gets lost in the processing or responding on his end. I also have been saying this for a long time. But there’s a part of me that feels a little twinge of doubt, that Kompetence Kool-Aid. I look at how my younger son Ben, who is fifteen, responds to Nat. He still gets frustrated by all the ways in which Nat has to be reminded how to behave. Even as a little boy Ben used to “herd” Nat (eight years older than him) when Nat walked too fast, too far away from the rest of us. Nat still walks too close to strangers on the sidewalk and needs to be pulled back every so often with a sharp, “Nat, slow down.” It is very stressful  going out to eat with Nat and Ben because I know that Nat is going to chew with his mouth open, touch his food with his fingers, and talk constantly, in a regular tone, but to himself. Every so often I will catch Ben’s withering look towards Nat and I will then try to fix everything. I will put my hand softly on Nat’s back to get his attention, and murmur, “try to be calmer, Nat,” or “a little quieter, Darling.” Nat hears me and does it for a little while but eventually slides back to his natural state of being.  And Ben goes back to smouldering. I talk to him about compassion, of course…

Last night, after gently suggesting that he tell Nat himself, Ben said, “I did.” Clearly he was still frustrated and probably had so many other complicated emotions. What must it feel like to Ben, the little brother, to have a relationship with his oldest brother that is virtually impossible to see or feel? What kind of pain remains in his heart, from birth, never healed, to know that there’s a whole person, a whole fifth of his family, that he is never going to be able to talk to, hang out with?  When, how do you accept such a thing? Even I, Nat’s mother, accept this fact in many ways but there are still times when I long to know what he would be like without autism. To have a life with less struggle (in that regard), and the chance not to be constantly titrated, pushed, pulled, or remonstrated by others.

My husband Ned has no problem simply saying, “Nat, come on!” meaning, lower your voice. Ned is his parent, and that is that. This unabashed way of directing him sometimes makes me hurt for Nat, however. Would Ned talk that way to Max, our 21-year-old son? Maybe, if Max were being disrespectful or irritating. But when has that happened last? By 21 or 23 so many young adults have developed subtlety and poise, and their grown-up personae. There is very little room between that adult mask and their child faces.

But as much as I cringe when Ned is so directly parental with Nat — the way I would treat a much much younger child of mine — I also wish for Ned’s confidence that this is just fine. He’s Nat’s father, he will always be. Isn’t a parent always allowed to be parental, i.e., teaching, demonstrating, imbuing wisdom? Is it truly okay to Presume Competence when in fact that person is not competent in some very key, life-or-death ways?

No, not really. Ned is completely within his rights as Nat’s dad to tell him what to do. But my question still remains, how does it feel for grown-up Nat, when the rest of the world does it to him, as well?  For his own protection?

But — here’s the conundrum: if Nat is aware that he is not competent in a particular social setting, and thus does not mind others telling him what to do differently, then isn’t he, in fact competent, at least in a self-knowledge sense?

And so being aware of his difference, his position in society of being constantly correctable — how does that feel for him?  Does it make him sad, or is he used to it? Does he just think to himself, on some level, “yeah, fine, this is me.” Or does he live with an eternal underlying pain that this is how it is and no matter what he does he cannot get people to stop telling him what to do?


A big question. At my son H’s school they are always stressing age level appropriateness and how an 18 yr old with special needs is still an 18 yr old etc etc. I agree to a great extent but….as my son’s housemother observed (with some surprise and embarrassment to me one day) ” I know H is 18 and I always treat the kids with the respect due their ages. But I have discovered that H simply responds SO MUCH better to what I would consider “baby talk.” Simple short clear statements and commands, even a sing-songy emotionally charged kind of voice. It catches his attention and he listens in a way he does NOT when I speak to him in an age-appropriate manner! I feel kind of bad but what can I do? Adult speak flies right by him, he just isn’t interested or else can’t understand it, despite constant modeling.” I completely agree. Even to the feeling bad. It’s a real quandary.

— added by Nancy Bea Miller on Sunday, August 4, 2013 at 8:29 am

In my opinion, we need to presume competence initially….then adjust as necessary for the specific individual. My 17 year old son is severely affected and is totally non-verbal, but understands what is said in his presence if he’s paying attention. He’s competent in some things….not so much in others….and how he’s approached needs to vary with the circumstance.

He’s very attuned to attitudes and tone of voice. Being approached with respect is critical to his success. This past year at school he had an aide who spoke down to him….and he did NOT respond well to being made to “feel stupid.” Academically, he has no interest, and no apparent skill. With life tasks…unloading dishwasher, cooking, maintenance chores, laundry, servicing vending machines….he’s much more competent and can function more independently….with little direction.

As my husband has said, “there are so many things he can ALMOST do.” The key is to continue to expand that list, assume he can eventually achieve that competence, and set expectations accordingly.

— added by Peg Pickering on Sunday, August 4, 2013 at 9:19 am

We proved through non-verbal testing this past spring that my non-verbal son is at least borderline IQ. The Teacher and I both know he knows more than he can say. We watch him work, we watch him play… Then we nearly got removed from our classroom and… that made for a fun end to the school year. We’re at a different school – aged out of the other class – but still in the same style room with his friends from the other school. Mama threw a hissy.

Problem is, the autism makes a mess inside that head of his and things just don’t work they way they should. 5 pgs later and I asked the psychologist what she thought and she said “textbook severe ASD”. We’re getting an EEG, I’d love an MRI to see the mess but living in the land of full “Obamacare”… we can’t pay for it and get it done.

How can a nearly 12 yr old child that is currently sitting at the kitchen table, singing to himself, drawing maps – page after page, corner after corner, 911 number after… – into his DSi but unable to cross a road without me holding his hand. No idea… that’s just what it is.

Yes, I parent like Ned. No, I have little to no tolerance/patience for his 2yr older bro who behaves like Ben. One day I will write in my will that the elder have no control over his finances or living when he is of age. If there is no compassion now… sorry…

My youngest will probably never become older than 9 or so… I presume competence in many things… I also realize that in the end the autism will never ease and I need to parent – and I don’t “baby” – that to keep him safe and learning.

It is… what it is. I don’t have to like it, but I will live with it.

— added by farmwifetwo on Sunday, August 4, 2013 at 10:03 am

Oh, dear Farm Wife 2, I always like to hear your honest, no-nonsense, confident (if sometimes a little un-empathic)approach to raising kids. But I must take issue with your characterization of “Obamacare” in your country (Canada), and how this Healthcare For All policy makes it so that you cannot afford to get your child an MRI to see “the mess” in his head. First of all, Healthcare for All is about getting access to even the most basic aspects of healthcare, which many many people in this country did not have at all when insurance companies had so much say. I have to remind you that now autism therapies are to be covered by insurance, whereas prior to Obama’s healthcare package, this was not the case. The fact that you cannot get your child an MRI just to look into his otherwise healthy mind is in no way a reason to throw the healthcare baby out with the bathwater. Unnecessary testing is never something that insurance should pay for.

So many more people will now have access to healthcare, how can that be bad? Because of Obama, Medicaid and Medicare will be able to support the most needy — many of whom are adults with disabilities like autism.

Yes, there is a cost to the nation. But what are the choices? Let poor and disabled and elderly people just simply fend for themselves? And tell me: what are taxes for, anyway? For supporting a military — in Canada? I doubt it.

I’m sorry to sound angry. I guess I am. Not just about what you said but because I am fed up with the attacks on what may be the most humane set of laws ever enacted since the National Recovery Act and the Americans with Disabilities Act.

— added by Susan Senator on Sunday, August 4, 2013 at 12:10 pm

I try to use a respectful tone, but fairly simple language. If my sons are given their choice of videos on YouTube, they still choose baby einstein and Sesame Street (with the occasional Justin Timberlake).
And, for what it’s worth, living in Texas, I have gained a deep appreciation for societies which take care of their elderly and disabled (which Texas does NOT). Love Obamacare!

— added by Alice on Sunday, August 4, 2013 at 2:46 pm

My son is self-aware enough to identify his strengths (“Most kids my age aren’t interested in math like me”) and his weaknesses: “I get upset easily,” and “It’s hard for me to make new friends.” But when he’s tired or ill, he loses the ability to respond to questions or follow simple directions. I assume, though, it’s a matter of output being too difficult, not lack of awareness. Perhaps it’s like that most of the time for those more severely affected by autism than he.

— added by Chris on Monday, August 5, 2013 at 1:20 am

Just an FYI, I have medical insurance and always have and mine does NOT cover ANY “autism services” so don’t try to make it sound rosier than it is!
Mine will not cover ABA, OT, PT Speech or social skills group. Many insurances are not required to abide by the new autism insurance laws-depends on your company and what insurance they provide. I’m getting a little sick of people preaching that this is the answer to their prayers! I also know many parents whose insurance does indeed cover many services and the services they get are either crap or impossible to obtain due to distance, availability, etc.

— added by let's be honest here on Monday, August 5, 2013 at 2:38 pm

It certainly is not rosy, and I did not mean it to sound rosy. Perhaps I overstated what is covered in terms of autism therapies. It’s only that Obamacare is *better* than what we have had. It is likely that it is not even being implemented yet, it is kind of early.

I believe the bottom line is that if private insurance companies don’t cover what they ought, it’s because they’ve been allowed to do whatever they want in the name of privatization and free market competition. “Healthcare for All” may not be as far-reaching as it sounds, but our old way of doing things is even more minimal and unfair.

— added by Susan Senator on Monday, August 5, 2013 at 5:00 pm

Well said Susan! Had to laugh when I read a previous commenter blaming Obamacare for their lousy health coverage…it’s not even fully implemented yet folks! But do feel free to put the blame where it belongs: the previous president and that regime’s full backing of the corporate healthcare system. Together they get an A Plus for steering the country’s healthcare ship aground…it will take a while to dig the ship out of THAT sandbar. 😉

— added by Nancy Bea Miller on Monday, August 5, 2013 at 5:22 pm

Instead of over feeling everything, you should just be grateful that Nat is doing well. He is happy. If he weren’t, you would know it. I am sure. You have two other great kids. Count your blessings. You appear to have a pretty good life, all in all.

— added by Julie on Monday, August 5, 2013 at 11:27 pm

Might I suggest invoking a variation of Godwin’s Law (i.e. the discussion ends as soon as something is compared to the Holocaust) whenever Obamacare is mentioned in the comments section.
“Sometimes a little un-emphatic” made me chuckle.

— added by Leslie on Friday, August 9, 2013 at 8:12 am

Uh, has it occurred to you that maybe Nat has motor control or impulse control issues that he can’t control? Like he could want to walk slower, but his body goes faster instead.

Don’t treat him like a little kid. And DO NOT wish what he’d be like without autism. He will read that someday and hurt as much as it hurts me, a total stranger, to read it.

–an autistic adult.

— added by C on Wednesday, June 17, 2015 at 8:27 pm

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