I confess. It was late in the workday, and I was hot and bored. After checking my email, I followed a link to the Washington Post, a paper I normally wouldn’t look at unless I was using it to line the bottom of a birdcage, when I saw this headline:
Neurodiversity rights activist Jonathan Mooney: “You’re not broken”
I knew it was simply a baited hook, but I bit down anyway.
And like a sharp object poked through my lip, I found it irritating.
You wouldn’t know to look at him that Jonathan Mooney is a man with a disability. He is young, handsome, and speaks with an easy style and a confidence that doesn’t reflect early, dire warnings of jail or a life flipping burgers that his early teachers predicted for him. To look at him, you wouldn’t know that he is an energetic advocate for what he calls “a defining rights movement for the 21st century,” the neurodiversity rights movement.
You can read the rest of the article for yourself, but the gist is rather than concentrating on helping kids with autism connect with and conform to the world in which they live, we need to find ways and places where they can continue to be who and what they are without such expectations. Hence the idea of a “neurodiversity rights movement”. And hence my irritation.
Now before the more sensitive among you take it upon yourselves to swaddle up in the mantle of self-righteous outrage at how I am about to proceed, be warned: I have two boys who are autistic.
These young men have been a real blessing in my life, and have helped me to nurture an incomplete sympathy into a more developed sense of empathy than I would have likely ever developed if left to my own devices. And when I say “autistic”, I am using the generic term which is what I am told is the new proper term. If we go to older diagnoses, which I tend to consider more precise, they each have Asperger’s Syndrome, which is on the autism spectrum, but is usually a type of high functioning autism which can manifest itself in some interesting behavioral quirks, but doesn’t necessarily make the afflicted person stand apart the way a child with other, more extreme forms of autism can. In my oldest son, the symptoms have been a propensity toward sensory overload, which used to lead to some alarming meltdowns, an unusual focus on various things, sensitivity to loud noises, very weak fine motor skills, which makes handwriting difficult, and a lack of comprehension of the various social customs that are second nature to other people, such as knowing that you face front in an elevator, or knowing about and respecting the idea of personal space.
In my younger son, the symptoms are marked by inappropriately loud reactions, which correlate to his frustration levels, walking on his toes rather than his feet, a deep shyness around people he doesn’t know well, sensitivity to loud noises, and an expanded sense of anxiety around people, which can cause him to “flap” his hands.
While I can echo Mr. Mooney’s sentiment—they are not broken—nor are they normal.
I want them to reach their fullest potential. I already know that they are smart. The oldest one’s vocabulary alone far exceeds the 5th graders he shares a classroom with, and his little brother was reading when he was three. Their intellect doesn’t worry me. And the help that the oldest has gotten has helped considerably with his social skills. he hasn’t had a “meltdown” in 3 years, and you might have to talk to him for a few minutes before you might start to realize that he doesn’t really see the world quite the same way as everyone else. And I am glad for that.
Humans are the only creatures on the planet who figure that other like creatures owe them a certain deference because of their condition, and we in this country take that one step further by passing laws that purport to confer “rights” in order to make people conform to these expectations. This is, of course, silly. If you have to rely on the activity of government in order to confer a right, than it isn’t a “right” at all, it is merely a mandate for deference, and mandates can be changed on a whim.
I want my children to grow up to be happy and fulfilled. Every parent who cares wants that for their kid. However, I don’t think that learning to meet society’s minimum expectations hampers that ability. I know my kids are capable of doing that. I watch as it happens more and more as they grow older. It hasn’t changed who they are. It hasn’t destroyed their way of looking at the world, but they have gotten more adept at dealing with it.
I realize that this isn’t an option for every kid with autism. I realize that for some, no amount of training will enable them to interact in a regular and normal way with the world around them, and those who love them. For them, others may always be their conduit to the outside world. I remain unconvinced that special rights are the answer for supplying those people with the respect that they deserve as human beings, or that such a grant really is to the benefit of society.
It comes down to a very simple truth. The touch of God is present in everything and in everyone who surrounds us. If we are created in his image, then we owe that respect to each other. It it sometimes difficult to maintain, as some people sully or misuse the gifts they have been given, but it is this recognition which is sometimes lacking for which a mandate creates a very poor substitute. Anyone who spends time with an autistic child understands that whatever the behaviors might be, there is still a dignity there, and that dignity sometimes drives them to achievements that teachers and parents don’t think are possible.
I want my boys to be who they are. I want the world to know that their hearts are so much better than my own. And I want them to be able to make their own way. That doesn’t happen in a world that has to accommodate them, and they would never know if their achievements would be the same without the deference.
You keep your “rights”. I’ll keep them learning, working, and growing in their understanding and ability to deal with the world around them.
B is W
God bless you sir.
I know exactly what you’re goung through at least by half my 21 year old son was diagnosed with Ashberger’s 15 years ago and all we ever wanted for him was to have as normal a life as we and he could make for him.
We really did not want special treatment for him but wanted him to be treated as any other child as much as was practicable while the school wanted to place him on vitamin R. We won that fight. Of course it helps that my wife is an RN.
Through my wife’s patience and deterimination and the knowledge she gained to help him he now goes to a technical school to learn computers. He is very much a smart normal kid and until you’ve talked to him for awhile you would not guess he is a little different from you and me.
Good luck, sir. There will be days that try your soul especially when the hormones kick in but hang in there with the right attitude and a little love it will get you through.
It’s the little things like this that put a smile on this old bastard’s face.
You are a far better man than I, lawyer or not
Nice BiC – and from the heart.
I read through the list of Asperger’s Syndrome symptoms several years ago, because our neighbor’s twenty year old son was diagnosed years ago.
‘Russ’ and I have gotten to be pals over the years. His dad travels and so I would go over and work with Russ observing him building his models and sanding his old pickup truck his mom and dad bought him. What I found is that Russ may be the sweetest young man I have ever met. He and I clicked from the start. Russ would hug me, tell me he loved me, and we’d get to work.
A few years ago, his mother and father found Russ a job working at the local grocery store. I have to admit, I was skeptical at first. Russ’ mother and father have high expectations for him. Russ doesn’t drive, so his mother takes him back and forth each morning to work.
When I shop, Russ runs across the store, gives me and my wife a hug, and says for everyone to hear, “I love you “Tex”.” I answer back, “I love you Russ.” The grocery store employees loves him, the customers love him, and in talking to the store manager one day, the manager loves him – calls Russ his most dependable employee and a joy to be around. He is. To me, Russ offers something that I don’t observe much anymore – genuineness.
The world would be a hell of a lot better place with another Russ or two.
The invention of notional “rights” is just another aspect of the Left’s attempt to replace God. Our true rights descend from our nature — i.e., from what God made us. But that would never fly with a leftist. For him, “rights” must be grants from power to the powerless…and of course, such “rights” can be abridged or suspended at any time the Left finds it convenient.
What an incredible surprise…
I had an autistic kid who was my teaching assistant in my high school digital media classes for two years. The first year, his case workers requested that he TA my class as he was comfortable around computers and felt safe in my classroom, the second year I invited him back to be my TA because he did such a damned good job and was so technically savvy.
Outside of some issues with his rambunctious personality he was one of the best students I ever had…..I believe he’s at the UW right now.
BiW…
This is a rare event, so don’t blink.
I agree with you.
My wife and I have both worked with children with autism. There is indeed an inner beauty that is perhaps not easy to see at first glance. The general population tends to be frightened by people with mental disorders – and their first reaction is often to shun them before taking the time to get to know them.
This is not to say that raising a child with autism is an easy thing. In fact, I know that you do not have an easy road to travel, but you seem to be traveling it with grace and honor.
I agree on the “rights” issue too. I have seen this plenty of examples of people seeking what I consider unreasonable accommodation for their children with autism or mental retardation or other behavioral disorders.
Out of professional curiosity, do you have them in any formal therapy, and if so, what type?
– hp
HP,
The Psychologist who diagnosed our older son told us that there were no therapies. We later had him with another who gave us a diagnosis that said he was never going to live a normal life, that he was always going to need help, was never going to be able to form relationships with his peers and members of the opposite sex, and that he wasn’t going to be able to live on his own some day. The third one we had him with didn’t appear to be doing much other than talking with him. He really started to progress just by being in school and scouts. If you met him today, you might start to suspect that he isn’t like other kids if you talked with him for a while, but it isn’t immediately obvious. He is enrolled in “regular” school, and leaves class three times a week, twice to work on his writing…not composing but the physical act, and once a week for his social skills, which he has learned.
His little brother could not be enrolled in regular kindergarten. In addition to the Asperger’s, he was actually almost deaf for the first three years of his life. (and that was the darkest moment I had as a parent, was him sitting on my lap in the sound proof room without him reacting at all to noises I could hear clearly).
We got his hearing fixed, but he was speech delayed, and it still affects how he interacts with other people. We got him into a developmental preschool which helped him to start to close that gap quickly. Its also when it became apparent that he was actually reading, and knew a lot more than they expected. The drawback is that a regular class can still be too much for him, and his anxiety about being around that many people makes it difficult for him to participate without being a distraction. The program he is in integrates him in with the “regular” classes. He was up to library, story time, recess, and lunch with the “regular” classes, which surpassed the school’s expectations for him this year.
He also floored me to tonight when he asked me clearly, and calmly “Daddy, what are you making for dinner tonight?”
The Psychologist who diagnosed our older son told us that there were no therapies.
Wow. How long ago was this? It can’t be that long ago – the Psychologist should have known better.
My wife was involved (back in the 1980s) with some if the early work on Lovaas therapy (aka ABA therapy). With early intervention and an intense course of therapy I am convinced that it is quite effective.
You keep your “rights”. I’ll keep them learning, working, and growing in their understanding and ability to deal with the world around them.
BIC, I think that your attitude toward your two sons is admirable. Admirable is too weak a word.
But I really don’t get your irritation with Mr. Mooney’s movement. Are you two really on opposite sides of some ideological divide? After you have kept your sons “learning, working, and growing in their understanding and ability to deal with the world around them,” it would be helpful if the rest of the world wouldn’t simply slam the door in their faces when they try to deal with that world. Opening more opportunities for people with Asperger’s benefits everyone.
I think that it isn’t so much that Mr. Mooney’s ideas that annoy you. I think that you are irritated because he phrases his ideas in terms that you associate with a political ideology that you hate.
Read the story again, and see if you can’t look past the language of “entitlement liberalism” and see your own common ground with Mr. Mooney.
Graychin, you amaze me.
This wasn’t a political post. It was about BiW’s boys, but considering you CAN’T READ and only TROLL here to start shit, you wouldn’t notice that.
Dick, I’m not amazed at all. I expect this from him…
Guys, Graychin is a scumbag and reprehensible man. No redeeming qualities whatsoever. At least none that I have ever witnessed.
Now you can see why I always believe in the no holds barred scenario with the him.
Tex, you forgot to mention that I’m also “inherently evil.”
Can I make a suggestion? This was indeed not meant to be a political post, so can we stop ruining it by trying to establish who has politicized it more?
Hey Doctor. There’s only one asshole here who politicized anything. Talk to your pal Graychin, the inherently wicked devil spawned from evil, to shut his stupid mouth when a man writes about his kids, especially in this capacity.
If you can’t read provocation in that babble from above, your even more blind than I imagined.
hippieprof,
Thank you.
There is no common ground with Mr. Mooney. Mr. Mooney wishes for these children to be tagged with the “victim” label and treated as such.
I don’t know if that idea annoys BiW, but it certainly annoys me.
BiW (and I, BTW, who also has a child that displays Asperger’s symptoms) wish our children to be treated like normal human beings.