Susan's Blog

Monday, January 2, 2012

The Parents Vs. The Autistics

It’s become pretty clear to me that there is another dichotomy in the autism community, and that I have to talk about it: the high-functioning autistics vs. the parents. This split is as lethal as the melting ground in a volcanic eruption. I am not talking about it to piss people off, though. I’m writing about this because I am sad about Nat and this question is like a moldy lump inside me that needs to get some light.  I do not want to hurt people by saying this stuff out loud but I have to talk about this.

I have many friends in both worlds, needless to say. This is a passionate community where friendships are forged from the deepest of despairs: the idea that something is wrong with your child. For the parents, having a child with autism means lifelong worry.

That statement alone is enough to inflame many autistics, however. So many of the high-functioning and Asperger’s group feel that autism is not the problem. Autism is a different way of being, of perceiving. If the autistic person is given the right supports, therapies, and education, and a chance to succeed, then there is no problem. The problem, to the autistics (I’m generalizing for simplicty’s sake), is with society. Society does not fund autism interventions or therapies nearly the way it should. Society discriminates, by insisting there only be one standard, one way of showing intelligence — mostly through being verbal. Society (going by what the media reflects) insists that people focus on what the majority focuses on — love, friendship, career, health, attractiveness, popularity. But these may not be what autistics focus on. If an autistic’s very perception is different from a neurotypical (NT) person’s, then by definition the autistic will be excluded, discriminated against, thought of as inferior.

If you can’t do what the majority can do, you are different. Different is usually not liked. Again, I’m not saying I feel this way, I am trying to reason out what I think happens out there. Different is usually disliked. The deeper the difference, the deeper the int0lerance. The more resentment. And yet we as a country legislate compassion — and rightly so — with programs like Medicaid, Welfare; we legislate fairness with Affirmative Action, and the Americans With Disabilities Act. And so, because we legislate and fund help for the different, the different then have a chance to become less so.  But what happens when they do?

Should autistics be trained to some degree to lose their appearance of autism in the name of having a “better” life — or would their lives be better without the attitude that different is bad? The divide is whether you believe that autism is an inherently good or bad thing. The divide is about who can speak for whom. Should a parent push their autistic child to be as NT as possible (suppress stims, learn to speak) in order to live a better life? (“Better” meaning more like the mainstream, or at least more independent of others’ help) How far is too far? We all agree that we should do no harm. But how do we define harm? Many parents feel that you should do everything you possibly can to mitigate the autism: education, speech therapy, SI, behavior mod, biomed interventions. And many high-functioning autistics feel that if you do this with the underlying assumption that autism is something to be rid of, you are abusing the child because you are giving him the message that he is inferior. Because autism, to many autistics, is a part of them, and not a bad part.  To the parents, the autism, the autistic behavior, these are problems that should be fixed to whatever degree possible, because they are getting in the child’s way of a better life.

The divide is about not knowing where the truth lies, if there is even a universal truth.

My truth is pretty much only about Nat. My need — the purpose of this post — is to admit that I don’t know what he knows, and that is a huge source of pain for me. If I see him sitting around doing nothing except move from to chair to chair throughout the day, I feel bad. I look at him in his fullness and his clear, complicated eyes and I ask myself, “What kind of life is that?” Yet to give him a chain of activities, even to have him choose between a few, feels like I’m forcing an agenda on him. The choices don’t usually make him smile, but is that because he doesn’t know to smile, doesn’t smile socially, or because he truly is not happy about the choices?

Many high-functioning autistics and Aspies will tell me to presume competence. Assume that Nat understands pretty much everything around him, everything he hears, but he does not communicate that. He chooses not to, or he cannot. Either way, assume that he is at roughly a 22 year-old’s level of comprehension. Remember those who suddenly speak at 30 and say, “Don’t treat me like a child.”

But the parents experience their child differently from this. Or I should say, I do. Only sometimes can I see that Nat is understanding what is being said. Many other times that is not at all clear. Ned says I read meaning into what Nat does, that I project. Ned’s attitude is — to simplify it a bit unfairly — work with what we got, work with what we see, make the best of that. Don’t make shit up.

But I often feel that I am intuiting what Nat feels and connecting with him and enabling him to do more and grow. My attitude is more like: what if Nat does know close to everything that is going on around him; then shouldn’t I be treating him as if he has Asperger’s, and taking him to Aspergers Association of New England meetings, to Autistic Self Advocacy Network meetings?  Talking to him all the time, the same way I talk to Max?

But what if he needs a slower, more simplistic way of talking? If I presume competence, I may end up talking over his head and excluding him!

I think that the more negatively you see autism, the less you can believe that there is someone there. In effect, you experience him as less, as different, as not fully able.

Or is it that the more you hate the autism, the more motivated you are to build the child’s strengths and make him more successful — and perhaps “less “autistic?


Susan, although I understand your frustration,I can also tell you no one person is wrong. We all go through these trials and tribulations. What needs to be respected is that we feel, sleep, eat, breathe autism. We are as mothers , our nature is to protect the rights of our family. My son AJ, was not diagnosed til the 7th. grade. I knew nothing about autism, but read DSMV, and figured it out when he was 9mos. old. No Dr. would believe me, I got a computer and without any technological experience, researched everything I could find. There were two studies in California at UCLA and one At Harvard on the east coast. With the help of their researches I was able to try different approaches they suggested. Some worked others didn’t but I kept trying for my son’s sake. AJ didn’t speak til he was three. I thanked the district for their help,but in reality it was I who kept helping him. Through Elementary he was bullied, through JR he was bullied, through HS he was bullied. The other students did not understand him. He would lick the glass at the entrance when overwhelmed by bulling. Back then 23 yrs. ago no one heard of Autism. I worked hard for his services was even attacked verbally by two school psychologist suggesting I was to blame for my son’s autism. Throughout it all and no help with ABA or any other help, the IEP to me was toliet tissue! We as parents do what we can, but I’ll be damned if I let anyone tell me he isn’t disabled , or fit in into what society thinks he should or shouldn’t be in order to get the monies he needs to get psych help,medicines that cost $1500.00 a month. I can’t afford. I never let my son succumb to what society wanted or didn’t want or expect of him. I let him be him. I always stressed, they do not understand how special you are , but one day my son you will be you and I want you to like you! Years have come and gone, still hates change, has fits if he’s set on something and it doesn’t come thru, meltdowns. Sometimes things don’t go right or hurt and I have to hold him for hours. He is considered socially un-fit. Getting better at it. I except him, love him, am here for him till my days are done. That is what loving parents do!! there is nothing wrong with having opinions, just remember that if it didn’t work for you it might work for others. Autistics are different, because of the Autistic child or adult experience is different for all of us. Let’s communicate effectively. I am having trouble with people who try to put my son in a box, and claim to know him. I pray everyday that the Gov’t helps us all! To raise an autistic child form birth to adulthood 2 million dollars. Who has that money and now our Gov’t is trying to make rules and categories for Autistics to fall in. You go through the red tape of beurocracy and still wind up being told he doesn’t fit criteria!! Sound familiar?? they do it in drs. offices, in schools for services, and IEP’s and now the gov’t . which has no money is trying to tell me they will take care of my child in a specific box and only if he qualifies. where is the justice in that??? We as parents of these kids won’t last forever, our finances are drained and we are desperate for the help of all disabilities not just ours!! When will we learn to not put comments that offend. Instead read the comments as, this a parent going through lots, we have all been there!!Let’s show compassion, lets unite not divide we are stronger united not divided. We all have bad and good days not just our kids. We all say the wrong things sometimes, but we all can unite, that we want the best for our kids , we will not last their lifetimes. what we do as parents should not be judge by others, we are doing the best we can. If you have not walked in our shoes, restrain from making offensive comments. Please show compassion for those of us who on bad days must vent what is pent up in us.We all hurt. I am hurting but I pray that one day the Lord will do justice with those who do not know. My ex-husband left me because he didn’t want his money in IRA’s depleted by my son, that was a year and a half ago. I finally woke up, he never loved his son, he didn’t want to give up his money because he was selfish. Good riddance, together my son and I have dealt with the effects. My son will never know his fathers excuse. Why all because the military didn’t want to keep up services, and SSI said he didn’t qualify. Talk about tough, but I am sure there are more moms and dads hurting out there. It is how we roll as my son says. I thank the Lord everyday that I had AJ to go through the divorce with me. Without knowing a word of what his father said or did. My son proclaimed,” Mom he never Loved me, I sensed it.” When I was little he would say I was only your son. I didn’t know!! He came to that realization by himself, the mind is an incredible thing. He told me Mom I’ll love you forever, thanks for everything you tolerate about me, and autism. There people was my reward. My son for the first time had remembered something from childhood that sparked that answer to me, about divorce. He said dad left because of me. I of course said nothing just let him vent. I am not patient person but I am learning to be. My son is a blessing not an inconvenience. I am broke, have no job and am a single mother of the most loving, giving human being I know, all because I chose to be a mother, I feel like the wealthiest human being!!

— added by Milagros Diaz on Wednesday, January 4, 2012 at 1:21 pm


Thank you for this post. I have days were my 6yr son whom was diagnosed a yr ago w/ASD will not communicate or be productive @ school. When we he gets hm he plays in the backyard by himself. When I go out there to play with him he will get up & go inside as if I am invading his space. I have shed many tears after I have dropped my sons at school wondering what did I do or say this morning to make him feel overwhelmed & have a meltdown? How do I encourage him without pushing to hard? What is the balance & is there really a balance with a child whom has ASD?

When we are out in public I get inraged with the way Society labels him when he has his meltdowns or his ticks are showing from the frustration from not always being able to communicate because his mind is going a mile a minute but his words aren’t coming as fast. His classmates don’t know & just don’t care that he is UNIQUE!. I never see him as having a disability but be UNIQUE! No one is the same but everyone has a Heart that beats, has feelings, shows emotions & deserves the respect. I know my son has taught me what Uncontional Love, Exceptance, & True Strength really is.. I am the Blessed one to wake up to such a BEAUTIFUL person that I get to see the World in so many different ways. If people want to be ignorant I say go to Hell, Stay out of my sons way & your missing out on an amazing journey!! Like the song says ” It’s not always Beautiful, But it’s a Beautiful Ride!!

May God continue to give us Mother’s, Father’s, Siblings & family members the strength on those off days with tears , frustration & the why or what if’s.. May everyone have a Wonderful New Year…

Keri Parsons

— added by Keri Parsons on Wednesday, January 4, 2012 at 5:09 pm

Why are people talking about pulling their kids out of the “maize”? Does the child of more than one person here have a fascination with hiding in corn?

— added by Katie on Saturday, January 7, 2012 at 4:45 pm

Man, that is corny…

— added by Susan Senator on Saturday, January 7, 2012 at 5:33 pm

May you find love in your heart to overcome that hatred that creates in you the desire to destroy you child for being different.

As a parent of an autistic child I believe that:

Loving my child = loving autism – loving autistic people.

— added by Michelle on Thursday, January 12, 2012 at 3:49 am

I don’t think “hating the autism” ever did any good. I know there is a difference between having a child like I was and having a child who is nonverbal and still using diapers at 20-30. I wasn’t necessarily easier btw, quite a bit less innocent. To some extent parents who have kids with disabilities ought to realize the grass always seems greeener on the other side and non disabled/less disabled kids can create all kinds of problems and headaches for you, its never been easy to be a parent and its only getting harder these days. That being said my mother didn’t exactly say thank god my kids just a little different instead of really severe, whatever degree of disabled, different, “weird” I am and perhaps more importantly not good at getting good grades in school, it was clearly too much for her. She blatantly favored my younger brother who to be honest have a few Aspergers traits but is not diagnosed Aspergers. I could do no right he no wrong, and I was plenty conscious enough to notice it. Constantly I was subjected to scathing criticism meant to be helpful negative predictions about how I would never amount to anything, and “social tips” in the form of comments like you will never have any friends and you are never gonna get a girlfriend if you look like that act like that talk about those things etc. I hated school in part because I didn’t do well and that’s when she really started to be so disappointed in me. Also school sucks, its kinda circular like that of course. I have a hard time believing or even accepting it when people are friendly to me, nice to me, want me around. A feeling of belonging feels weird uncomfortable even though I certainly want it because I am not used to it and was taught on a deep subconscious level I don’t deserve to belong. And its almost like people can smell that and take advantage of me because while I occasionally defend myself quite forcefully about ¾ of the time I’m a doormat and I am easily manipulated, but not because I’m dumb.

I don’t throw temper tantrums where I make dinosaur noises, which doesn’t mean a repressed part of me doesn’t want to. Certainly I do this in private sometimes and I know there are “neurotypical” people who do this too, to some extent the difference is that Neurotypical people know to hide their stims and very normal habits that have been deemed “weird”despite the fact that we all seem to like them and need them. I learned to limit my stims to touching my face and pacing, going for walks etc, eccentric, weird, but not quite “retard”, which I have certainly been called before. Lots of people have found me weird but most don’t guess that he is Autistic. Sometimes I yell and say rude things and I am really just doing my slightly more “neurotypical” version of a stim. A tantrum of noises are at least safely devoid of specific meaning. I say bad things I don’t mean, and anger people without knowing why. I never hit people without thinking am not at all physically violent but sometimes I am the verbal equivalent of someone who loses control and starts swinging. I happen to be fairly witty and intuitive about the things someone might really care about so I can pack a punch. Though its what I want there is a price to pay for being treated like everybody else and not recognized as having a disability on a day to day basis. I consistently bite off more than I can chew, I think big thoughts and I do have a big heart and I have a voracious appetite for travel and experiences and food to be non metaphorical so I am involved in lots of work both paid and volunteer and I do have friends. I run up against the limitations of what I can do what my brain can actually juggle where I can actually get myself to by bus but I don’t want you to tell me that, especially not because I’m “disabled”. I would rather find out what I can do by trying and doing. I am not afraid to do things that I am bad at and become better at them. I can’t believe people with Aspergers are supposedly supposed to hate travelling eating different foods and having different experiences. This may be true of somebody but not me. I resent the stereotype of us as a Sheldon Cooper only, as uber nerds as self absorbed wimps as asexual and as quite that damn clueless. Most of us aren’t that socially awkward, or we were at one point and learned with time. Messages that talk about how severely disabled we are in order to supposedly raise “awareness” and sympathy in society are at best a double edged sword. What about employers for instance, if they hear how tragically inept Autistic people are it really doesn’t make them want to hire us. Employers don’t hire people out of the kindness of their heart generally and they don’t want a hassle. Some companies hire people with mental conditons to get a tax break, but they usually aren’t exactly dream jobs and isn’t that a little demeaning? So it puts anyone who is so called “high functioning” and at all desiring of independent living a dubious choice between going in the closet and telling no one what they are and getting no help or accommodations or dropping down a notch what they are really capable and just settle down into being a dependent for life. There are a lot of homeless people who are Autistics, many of them are brilliant intellectuals too.

When I hear about parents grieving over there kid being Autistic and lamenting it I get it sorta. I don’t have a right to criticize it per se but intuitively it hurts. It provokes an immediate pain and anger. Why are we a reason to cry about? We are people too? Aren’t children supposed to be a joy to be celebrated? My whole life I have to fight this crippling sense of you’re nobody/you’re no good/ your a pain in the butt nobody wants around. Its one of the reasons I didn’t really want an IEP or any association with being special ed as a kid. I figured the principals and teachers would roll their eyes at the inconvenience, figuring they needed to cover their legal ass and resenting that little flesh and blood object of that inconvenience. The much celebrated angry “warrior mom” doesn’t exactly ingratiate her child with the people charged with educating them. Especially because oftentimes when it gets to the point where a parent is going to the school demanding a teacher make accommodations you are already not exactly the teachers pet. Despite leaning to the left politically, I just don’t like getting a bunch of government services for myself, I am not interested in gaming the system and am even more sickened by the thought of someone gaming it for me like I am not capable of even asking for my own handouts. I can’t drive and have an almost nonexistent sense of direction, and being “high functioning” and all I actually have places I want/need to be all over the place and I have to take the bus and its incredibly slow and I envy people who can drive. I know what I am missing, I also know what I am not missing, a brain, a heart/empathy, since were doing a Wizard of Oz thing here, courage too lol. I don’t really feel like I have a home though, gay kids deal with this too oftentimes of course.

It sucks to be born a disappointment, to feel unwanted, it really really sucks. It’s assumed that us Autistics are so clueless and non human we can’t even tell. I remember seeing an Autism Speaks video where a woman talks about how she contemplated killing her Autistic daughter on camera right next to her. One hopes she actually was too “low functioning” to get that but I suspect she understood exactly what was being said. When I hear parents talk about how brave they are putting up with such impossible kids it hurts me. If you need that kind of mother shop talk fine maybe you could keep it in private and not have it dominate whats supposed to be our civil rights movement.

And by the way we aren’t just children. All the focus is on parents. We can debate back and forth whether Autism is a tragic disease or whether its something to be celebrated till we are blue in the face, and I am not always sure what side I am even on in that. Its something I contemplate but its of course not an abstract academic question its sort of between me and my God. What I do know is it feels rather odd and imbalanced that about 90 percent of the focus on this condition is on the parents and not really on the people who have it themselves. Even if Autism is just a terrible shitty thing its still our thing to deal with our burden to bear. Woe is the parent of an Autistic child, they are so brave dealing with this adversity. We need to do something for parents, perhaps we should throw them a parade like we do for war veterans, warrior moms veterans of the unenviable task(despite the fact having a child is a huge dream and goal for many even most women) and the horror of having to raise someone like myself. People in wheelchairs are assumed to still be people with brains and souls despite not having working legs. The actual person dealing with it, is never really addressed, they are talked about only through the lens of being a real human beings child or student or patient. They are a phenomenon to be studied a trial to be endured a puzzle to be solved, an angel sent from God to teach us patience and simplicity(because we’re so damned annoying/Forrest Gump simpletons) We are presumed to be about as capable of commentating on this discussion as a dog would be on a discussion of dogs. This wouldn’t fly for other disabilites I don’t think. A support group of siblings bitching about growing up with a brother or sister in a wheelchair would not be considered PC. To call having a child or parent or familiy member in a wheelchair a tremendous burden will make you seem really selfish mean and immature in polite society instead of heroic. Its not considered PC to say a mentally retarded individual is soulless or heartless, though considered science to say things like that about us. When an Autistic kid is murdered by a parent or caretaker, even a priest they tend to get between 2 years to no jailtime. Our lives are less valuable under law, almost life unworthy of life. Presumably the jurors hearts go out to the poor victim, of having to deal with an Autistic person like myself. Or maybe they are seen as putting the Autistic person out of their “misery”. As long as the murder of Autistics is semi not illegal it puts all of our lives at risk.

A tearjerker of an Autism Speaks video featuring parents frankly talking about killing their kids might seem “raw” and “real” and “brave” but also fuels an attitude in society that is permissive of mercy killing people like me. So are we all friends are we buddies comrades in one cause or are some of those “nice” middle aged middle class white PTA moms are actually a threat to our health and safety and the health and safety of all Autistics. Considering the salaries some of those Autism Speaks employees pull down their real motivations may simply come down to money and ego. At the expense of our dignity and safety. I think you will find some brotherly sisterly paternal maternal feelings amongst the Autistic rights set. We aren’t parents obsessed with their kids being a certain way, quacks trying to sell product or well meaning but ignorant experts. We don’t really have an ulterior motive and regardless of how “high functioning” we may seem we get it, we know what its like. To actually be Autistic.

There is a real division there, lots of people screaming about the need to do something about Autism and we need more money and services are ultimately advocating for a tremendous stigma to be placed upon myself and others.

— added by Berisha on Monday, February 4, 2013 at 4:07 am