The Nonsense of Neurodiversity

 

Oh no, blasphemy I have said the unthinkable. Here is a parent of two-neuro-disabled children and I think that the entire idea of neurodiversity is a sham. I also don’t need hate letters from persons in the neurodiversity movement who think I am now akin to the anti-Christ. There is wishful thinking and there is the reality. There are societal codes and there are laws and regulations by which to live your life. I think in many respects I really don’t like the neurodiversity idea because quite frankly it’s about giving up. Listen I am not talking about those who are tremendously impaired, society has to make room for and help these people. I am talking about persons like my boys who have the potential to fight for the life they want and not have to settle for a life that someone else designs for them.

The neurodiverse crowd says, oh you as a neurotypical, even though you are the parent, you don’t understand what they go through. No, I do not feel the internal struggle of what my boys go through, but what I do know is that they need to function in life in order to have a life. The idea that because they have Aspergers they can get away with inappropriate behaviors tells them that they are less worthy in life. There are rules for those who function in society and now there are rules for those who are outside the normal chain of events. This is not acceptance this is infantilization.

I wrote recently about the professors who don’t give college man the benefit of the doubt that he could perform in a classroom because there is group work involved. I wrote how I despise that attitude that he can’t do because of his autism. How is what the neurodiversity crowd want any different? How is it not infantilizing someone like my son? How is not saying that they cannot function in the real world? That the world must change for them or else the world is bigoted? The world isn’t bigoted, the world is moving along at its own pace and it’s up to those with disabilities to keep up.It’s nothing personal. It just is what it is.

The neurodiversity group says well, everyone should be accepted for who they are. True enough. That was the same language used in the civil rights movement. That is the argument against affirmative action today. Everyone should be judged by who they are not by what they are. They should be judged by the accomplishments. Everyone needs to be on an equal footing. Well, they are not you say. Welcome to the world. Some people just really have to try harder than others. No one said life was fair and no one said that everything in life was going to come easy. You as a human being are not entitled to be handed anything in this world. The only thing you are entitled to is the right to try to make your life the best that it can be.

But if you tell someone for their entire life that they do not have to try because of their disability, their skin color or ethnic origin, they are not going to try. If you tell someone that they do not need to push and push and push to make sure that their life is a success, then they will not. They will accept their own mediocrity and the mundaneness of their existence. Those with neurodiverse disabilities have a right to try to make the most out of their world and have a right to say, I am capable without having to fight for it. They have a right to belong in the world and have a right to fight the good fight.

But once you start making excuses for people because of a neuro-disability then they have lost the right to be grown-ups. Once you start making excuses for our children in their behavior the next level is their ability to think, reason and excel. Oh, you say it won’t happen because they are so smart. Well wrong. There is a difference between being intelligent and being able to function in the world.

I like the saying that Dr. Temple Grandin’s mother used to use about being different not less. But she did not have her daughter use autism as an excuse for failure; it was something to strive against. That if her child was going to succeed she would succeed by learning how to understand the rules of the world and obeying those rules. There were no excuses here and there are no excuses in our world either.

I suppose that is why I am not so thrilled by the use of Aspergers as a reason for malfeasance in courtroom proceedings. I don’t know about you, but my children know right from wrong. It is not an unteachable notion that you do not steal, kill or harm another of God’s creatures. It is not unteachable that you do not hack a government computer. It is not unteachable that you follow the law. I dislike it and I resent it. It is like when women used to use PMS as an excuse for murder. It demeaned and belittled everything that any woman would accomplish and gave traction to those that claimed women should not hold office, be police officers or fight in the armed services, for they may go off at any time and PMS someone.

I don’t’ think those in the neurodiversity crowd actually see the long term issues surrounding their movement. It is one thing to be accepted for who you are, and quite another thing when the powers that be pat you on the head and so, oh poor baby. Yes, make accommodations for testing, but remember in the real world, you do not get extended time for projects or an alternative location when working in an office. Sometimes you get a cubicle in the middle of a huge room and you need to learn to function within working parameters. Corporations are not going to function like babysitters. Society can’t function like that. It is one thing to put up a ramp for a wheelchair and an entirely different concept that because of a disability you can screw with a company’s output, timetable and other people’s future. It is why I always tell parents that there are accommodations and there are accommodations that infantilize your child. Make sure you weed out the wrong ones and make sure they set your child on the right path. Make sure that the school works on their behavior and that they work on functioning in society.

Today Highschoolboy told the vice-principal that persons at the school were bigoted against those with Aspergers because they don’t understand who aspies are. I truly don’t know where he got that one from. For all, I know he may have come up with that himself. But it was given short shrift by me and he got a talking to right away. I won’t have it. I will never allow it, not in my home. You want to be a part of the world, well you follow the rules. You want to function and be respected, well you follow the rules. Is it hard for you to figure out how to follow the rules, too bad, work harder and learn and practice? Stop feeling sorry for yourselves. Get your head out of your butt and figure out an answer and a solution. If you need help ask for it, I tell him. (Of course, it doesn’t mean that in a learning environment that the school is not also responsible for the appropriate support, but eventually, that gives way and the person with Aspergers needs to know how to help themselves).

Yes, everyone is different, but the rules are the rules. No one has a right to keep you out. No one has a right to discriminate against you because of a disability. But you need to do your job, you need to perform the way anyone else would, you need to function appropriately. To do otherwise or to say that it is not necessary turns the person with the neuro-disability into a small child and prevents their right to personhood.

Until next time,

Elise

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Elise Ronan
The purpose of this blog is to document the practical and realistic approach taken over the decades to help our two sons grow, and develop in order become all that they are entitled to become as human beings.
Elise Ronan

Elise Ronan

The purpose of this blog is to document the practical and realistic approach taken over the decades to help our two sons grow, and develop in order become all that they are entitled to become as human beings.

0 thoughts on “The Nonsense of Neurodiversity

  • July 15, 2010 at 10:39 pm
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    agreed. and this is great. 

    i have many disorders, and i take it as “try harder, don’t ‘NOT try'”.i dont want pity, i want understanding and if i mess up, id like to be understood and guidance as to how to make an improvement.i hate people who make mistakes left and right without care and just blame it on their condition.thank you for being one of the few rational in this world.

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  • July 13, 2010 at 9:03 pm
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    This is BEAUTIFULLY written, and truly inspirational. When I am able to self talk this way, I am able to function so much better. You are not a man-made label; you are a person, a capable one.
    Thank you for this! Made my day.

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  • July 11, 2010 at 8:39 am
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    While I agree with a great deal of what you say- the world is not going to change for me- I pity your children. How utterly vile you must be towards them whenever they make a genuine mistake.

    Take this example:

    My particular ASD is associated with profound disabilities in spatial reasoning. If I can see something I’m usually fine. Once it leaves my field of vision it’s lost. I lose all ability to track it. I cannot make my way through unfamiliar intersections. Even travel to familiar places is daunting since it’s all based on visual cues. If someone paints a vital building and knocks down a tree, I pretty much have to relearn the entire route. There are ways I can navigate around this disability of mine: I can read a map better than many people who have normal spatial reasoning. I count roads and intersections, memorise names. I catch lifts where ever I can. When I finally find a GPS that suits my requirements, I dare say you’d have to pry it out of my cold dead fingers. I’ve completed and passed several different driving assessments and courses, in order to highlight and improve those weak points of mine. I’ve even relocated to a country area, where it is so much easier to plan a route from A to B.

    BUT- and it this is a BUT in CAPITAL LETTERS-

    Learning to compensate for my disorder does NOT mean that my disorder magically disappears. It doesn’t mean that I’ve ‘gotten better’. It doesn’t mean that a little bit more willpower will make it disappear entirely. There’s serious structural abnormalities in the right hemisphere of my brain, particularly in areas associated with spatial reasoning. Unless a magical stem cell cure is formulated in my lifetime, I will always be spatial reasoning disabled.  If you put me in an unfamiliar area and hand me a map I’ll make it out; eventually. If you knock down all my visual cues in a familiar area, I’ll figure it out; eventually. But I WILL take many times longer than an NT and in an area of continuous redevelopment and change, I’m better off relocating entirely.

    I had a so-called friend visit me some time ago and her attitude was pretty much the same as yours: ASD was a condition that can be cured and overcome with willpower. When I tried to explain that in order to plan our holiday together I needed to do certain things ahead of time and during she actively prevented me from utilising every single one of my compensation strategies (planning ahead, learning the area I’m going to researching public transport etc and so forth, sitting there and giggling creepily or sighing in martyrdom as I fumbled with mapbook in peak hour traffic as I tried to cross the city CBD in peak hour traffic to meet her demands), but still expected me to pull a wonderful, perfect holiday for her out of my arse. I tried explaining to her ahead of time; I tried explaining to her when she arrived and I was blundering about, trying desperately organise something out of the shambles; I tried explaining to her when she went home desperately upset at having had “so horrible” a time. Her reiteration was that all forms of ASD and their associated problems can be overcome and gotten over and all I need to do is be more normal. My response at that point was to tell her she was self indulgent, ignorant and I never wanted to talk to her again. (Although my language at the time was definitely more colourful.)

    Now; are you going to walk up to a person with cerebral palsy that all they need to do is utilise a bit more willpower and discipline, stand up straight and walk properly? Are you going to walk up to me and tell me that my severe spatial disability is just self indulgence and all I need to do is get over it? I have congenital brain abnormalities, lady! They don’t disappear as I get older; I’ll just get better able at compensating for them. If, knowing ahead of time my disability, I join a taxi cab company as a driver I will get what I deserve. But if I join a company and say to them (and this has happened in the past) “I am severely spatially disabled”, and my role changes to include a lot of driving, it is not my fault if it all goes pear shaped.

    While yes, it is up to me to learn how to function in society, I am not like the majority of people in said society. I am not like you. I don’t know how to be like you. (If I did know how to be like you I still wouldn’t want to be like you because you are not a particularly nice person and deliberate cruelty is never excusable). I can modify my behaviours. I can learn to fit in better. But I will never get it perfect, I will always need what’s obvious to you explained to me, and I will always need a certain amount of leeway. In the early stages of identification and study of my particular ASD, the suicide rate amongst adults was 33%. 33%! That’s never excusable. That more than three out of every ten people with my disorder felt the only option was death is a tragedy and a completely avoidable one. I guarantee you that every single one of those people did what I did and pushed themselves past burnout to function in a place that is essentially incomprehensible to them, and all they (I) needed was for someone, somewhere to meet them halfway. My parents flatly refuse to believe in either mental illness or any form of ASD; that’s how you get eleven year old me playing with knives and writing books entitled ‘One Hundred Ways of Killing Yourself’.

    I try every damn day to meet the requirements placed on me. I learn, I modify my behaviour, I discuss my problems with trusted loved ones, I read books and consult professionals, I meet leering, giggling twits like yourself convinced that I’m just out for attention and resist the urge to smack them in their pancake-makeuped face. It isn’t at all unfair to expect me to conform to certain aspects of society. But expecting me to become a perfect simulacrum of yourself and subjecting me to ridicule when I can’t?

    Eff you, lady. 

    Reply
  • July 8, 2010 at 7:13 pm
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    @Tera – actually you are who I am talking about when i talk about a successful person, because you did push and push and push to get what you want. But what I see on a daily basis is parents making excuses for their children and deciding that their chidlren should have a free pass because of a disability. I also see alot of people giving up all the time and not striving to be the best they can be.I agree you can have any dream you want. It is about what makes us happy and productive. If living near the strip mall gave you pleasure then by all means. Happiness is about being independent  and an individual and deciding for you what you want your life to be. You don’t need to want those things that others want. This is what makes the world go round.

    But I do disagree on one thing, neurodiversity isn’t about picking your battles as you say. YOU learned how to let go of the extraneous stuff and learned how to pick you battles. It had nothing to do with ND and everything to do with who YOU became and how you matured and learned to cope. If someone told you your whole life that society owed you something because of your disability you wouldn’t have done or accomplished anything. You would have waited to be handed something that would never have come.

    But what you also have done and that was another point in the post, is to acclimate yourself to the world as it is. Your mother helped you learn to navigate the world so you can find what makes you happy. As I said while there are accommodations for people with disabilites, the world is the world and those with disabiltiies need to figure out how to function successfully  in the world. The world waits for noone.

    I also want you to know that I am glad that things clicked for you in your twenties. I am hoping that that is what will happen for my boys. With all the teaching and reteachinga and the therapies and the life skills, I am hoping that there is a cognative realignementfor them just like you had.

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  • July 8, 2010 at 1:47 pm
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    “But if you tell someone for their entire life that they do not have to try because of their disability, their skin color or ethnic origin, they are not going to try. If you tell someone that they do not need to push and push and push to make sure that their life is a success, then they will not. They will accept their own mediocrity and the mundaneness of their existence.”
     see a lot of the opposite, actually.Instead of people using their diagnosis not to try, I see a lot more people who grew up undiagnosed (or diagnosed but their families hid it from them), pushing pushing pushing very hard their whole lives and then burning out. They lose skills that they used to have (which were tenuous in the first place) or just cannot keep up the frenetic pace they used to live in.
    But you are right, in a sense. Neurdiversity *is* about “giving up”–giving upextraneous crap and picking your battles. I had a cognitive shift starting in my 20s, and have learned to do lots of things: walk around town by myself, cook,various volunteer jobs, and handle all the miscellany of adult life. With all this development, I also lost interest in/had trouble with some things I used to like, like reading books. (There was a time when I could only read books for children or young adults).
    Some of this development is because things suddenly clicked in my head. Thedirections to places my mother gave me started to make more sense. But some of it was because I was no longer in school–I could let that go. Since I’m no longer wasting energy on, say, navigating a place that’s not my house for six hours a day five days a week, I actually have more energy for navigating other places. And because I’m an adult (and fortunate in other ways) I can choose to do lots of things at home, so have more energy to “push” at doing the things I want/need to do.
    Sometimes all the pushing in the world won’t let you do what you need or want. You might have to find a different way to do whatever the thing is.And who says all our dreams involve working hard, having careers and being successful in some narrowly defined way? My dream was to live near a strip mall. (I did it, briefly). I often think I *should* want those things, but I really don’t. I like learning, doing interesting things, helping people out and spending time with the people I love. And I do that now.

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  • July 7, 2010 at 9:43 pm
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    This Elise’s furvor scares and, okay I’ll put it out there on this list
    anyway, angers the hell out of me. I get her point. But I also know the smell
    of forming an argument TO FIT your emotions and justify your biases when it hits
    my nose – and this woman’s argument REEKS of somebody who has formed her opinion
    right from her bones and has only gotten more skilled at expressing very
    defensive “pre-rebuttals” (pre-emptive strikes) against those she knows,
    statistically and empirically by now, *will* just as fervantly disagree with
    her.

    I held off my own temptation to indulge the hypocrisy of throwing back my
    own fingers to my ears and going “la la la la laaaa – I don’t HEEAR you!!!” …
    until I read her “but rules are rules”.

    That capped it for me. That tells me that she thinks the majority is always
    right. Used to be acceptable – socially and legally – to discriminate and even
    torture (whip) somebody based on race, and it still is the case that prejudice
    has real world consequences today.

    And, I’m sure that on the day the first town/state/federally funded wheelchair
    ramp was built – SOMEBODY out there whined “why should *I* pay for THEIR
    *special treatment*”.

    I hope I don’t have to delineate the cruelty and lunacy of that ignorance – not
    here! Seriously – good for this mom wanting her boys to be the best they can be
    – but her intensity and “that’s just the way it is and that’s just tough”
    attitude is harmful – and not just to her boys.

    Some children (well – students young and old) ARE given extra time on tests,
    because it has been shown to alleviate (or rather, compensate – at least
    SOMEWHAT) for the time it takes LD students to employ those compensatory
    measures just to ACCESS and understand the questions and present the answer they
    have developed over the course like anybody else.

    That’s not special treatment. It serves the function, albeit not perfectly, of
    “leveling the playing field”.

    We as a society need to develop MORE – and more sohpisticated – means of
    providing similarly compassionate and FAIR and opportunity-providing tools and
    rules – that help EVERY citizen access this world and this life.

    And yes, sometimes the “majority” has to be dragged to this more evolved and
    fair way of behavior kicking and screaming.

    I’m okay with that. Poor NTs. They have to put their whips away. Damned
    right, they do!

    -stan

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  • July 7, 2010 at 8:40 am
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    @shinobu_no_okami – Also as far as the school is concerned, they are wonderful and understadning of my son. They hold him to rules, but also do not met out the same punishments in the same manner as they would a child who is an NT. They are totally aware that there are times the he just doesn’t get things, but it is also important, as he will soon be an adult that he learn he must follow the rules and that there are consequencs in society. He will not be in the bossom of highschool for too much longer and he needs to understand this. So what he also needs to learn is how to apporpriately handle the anxiety that he feels and how to appropriately seek out the support and help he needs. Having some detention inorder to rememeber and review that is not a bad thing at all. When you are almost 17, 5’9:  and you raise a fist to a teacher, even with no expectation of hitting, but it is a reaction to anxiety, there are consequences in society when you do that in public. It is called battery and it is a crime. He along with all the other autistic chidlren who are soon to exit school and enter the real world MUST MUST MUST learn these lessons now.

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  • July 7, 2010 at 8:33 am
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    @shinobu_no_okami – Hi, I am afraid that you misunderstood the initial part of my post. The point was that no matter how hard I try I cannot understand how it is to live with an autistic brain,anymore than my children know what it is to live with a neutotypical brain. It is not just a matter of asking the right questions, because quite frankly without experienceing the other, neither one  of us has a point of reference. He may tell me what he doesn’t udnerstand when he is given a direction but he can’t tell me how he understands life as opposed to how a neutorypical understands life.It is not evil it is reality. Something everyone needs to come to terms with eventually in their life.

    As far as the ND movement. While society is getting better at understanding of differences, and that is a good thing, many of those with disabilities, or rather their parents, feel it is a get out of trouble or an excuse for poor performance. I do feel that there is a huge movement in the the ND world that thinks that they can reorder the world and quite frankly you can’t. It is one think to embrace and understood who you are and to learn how to function with your disability in the perameters of society it is quite another thing to think that society owes you everything and that it is society that has to ultimately change its entire way of functioning. Accommodations are one thing, understanding is one thing, but nothing is going to change human interactions and societal interactions. Rules are rules and society functions on those rules and you must learn how to interpret and follow them.

    I would also have to say that the rift that has been caused in the autism community by the purported leaders of the ND movement is wrong. The majority of those who have autism are not high functioning persons with aspergers, but terribly disabled persons with no hope of indepence and indivudiality..The emotional and physical pain that is caused by severe autism is immeasureable and as a parent you can bet if I could find a cure I would, not for my sake but for the sake of my children and my friends children For the ND movement to reject as “eugenics” the search for a “cure” for autism is quite frankly egoticstical and self-centered. They forget that autism is more than them.

    As I have always said and I will always say no matter what the ND movement thinks, autism is NOT a part of my chlldren, it is the thing that prevents my children from being who they were meant to be and makes life so much more difficult for them than is necessary. Anyone who says they love autism because it is a part of their child is an idiot in my book. I see autism as a disease no different than cancer and quite frankly in many cases it is just as life-threatenting. In fact with so many of those who are severely afflicted it is a living death for what makes anyone think that those poor souls are truly living a fruitful and happy life? So if if there was a pill, like in the Speed of Dark that my child could take and be done with their autism, you bet I would make sure they took it, as would any parent.

    So this is why I don not like much of the ND movement, not because they search for societal understanding but because they decide that it is all their way and that they are the only ones who have right to a voice in this debate.

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  • July 5, 2010 at 10:06 pm
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    If it is the other people’s fault for misunderstanding something he said oddly and not even wanting to understand, then that’s prejudice. It doesn’t sound as though you asked him to give you a full explanation. Assumptions are evil, not your misunderstanding on ND.

    Now let’s cover the misunderstanding.
    So, ND is all about us getting our own way? Nope. My ASD ND movement is about getting the freedom to move. Once off spectrum people start working to understand the individuals behind the symptoms, Autistics and people with ASD* will have a greater chance of developing curiousity in Neurotypicals, and knowing them as we ought. People with no reason to understand another won’t, and people who have heard and understood at the least part of why it was said they were handicapped at understanding, then they probably are, unless by some great miracle, they didn’t actually keep the belief that was given them. Therefore, it is up to decent Neurotypicals to lead the way. Give understanding to get it back. That is my idea of neurodiversity. Try to make us the sort of people an NT may want to understand.
    *Yes, ma’am, there is a difference in the aforementioned two ASD people types. One chooses to accept their traits, and even to define themselves by it to a degree, and the other is more likely to feel bound to it.

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