No You Don’t

trigger warning: stories of abuse, poverty, and discrimination

 

When I meet parents of young Autistic kids, especially after they find out how much I was like their kids when I was their kids’ age, many of them say “I hope my kid is like you when she grows up!”

 

I used to say, “I hope she’s much better off than I am,” or simply, “no, you don’t,” but over time I learned that parents refuse to accept that answer. Maybe they think I’m doing that social thing where someone compliments you and you are expected to refuse the compliment a time or two, finally accepting it but maintaining your veneer of humility. Or maybe they’re just baffled. But sometimes they even got angry so I finally learned that I should answer, “thank you. That’s very kind of you to say.” Reinforced behavior — reinforced by social censure if I dare give the wrong response. And I am exquisitely sensitive to social pressure — it was one of the biggest clues that made me reject the misdiagnosis of schizoid personality disorder the moment I was given that one.

 

But the truth is that they do not want their child to turn out like me. If your Autistic child turns out like me, you have failed. Your Autistic child deserves so much better than to turn out like me.

 

Oh, I know what the parents are seeing when they say that. I’m not so mindblind as to not realize: they see a very articulate adult. My writing skills are excellent. My vocabulary is quite large. And, while the largest part of it is self-taught, I am extremely well-educated. I even have university degrees: two bachelor’s degrees and an ABD (that’s “all but dissertation.” I dropped out of graduate school about two inches away from a doctorate.) They see that and they think, “my child is non-verbal. My child goes to school and crawls around on the floor, meowing like a cat. My child still wears diapers while all her age peers have been toilet trained. My child bites and hits people. My child bites and hits herself.” And so on.

 

Then they hear that I was many of those things, myself. I was kicked out of the classroom for crawling on the floor and hiding under the tables. My first grade teacher said I was “mentally retarded” and petitioned (successfully) to have me removed from her classroom. I would not speak. I bit people, hit people, bloodied other children’s noses, hit them with sticks, kicked, and spat on people. I could not hand-write and so I did not do school-work. I wet the bed until I was fifteen years old. I set things on fire. I was a very troubled and trouble-causing child. As a teen, I was expelled from the entire county school system and my parents had to find a private school willing to take me. At sixteen, I dropped out of school altogether.

 

And yet, they think, you turned out all right. I’m told I’m inspiring. I’m told I give them hope that their kids will be okay. How dare I dash that hope by telling them that no, I do not want their children to turn out like me. Maybe they think I say that because I hope their children do not succeed? That is not the case at all. The only reason I’m typing these words today is because I want your children to succeed. I want you to help them be happy, healthy adults. I want you to learn and I want you to do it better. I don’t want the children of today to spend tomorrow going through the things I lived through yesterday.

 

I was raped. I was abused — domestically and otherwise. I was molested. I was taken sexual advantage of. I want you to teach your children to say no and I want them to know how to mean it and back it up when they say it. I want you to teach your children to value themselves and I want you to teach them to own their bodies.

 

Children like yours — children like I was — are taught to be compliant. That’s what 90% of autism therapy looks like to me: compliance training. They become hungry for those words of praise, those “good girls,” the M&Ms or stickers or other tokens you use to reward them. They learn quickly that when they do what you want them to do, they are a “good girl” and when they try to do what they want, they are a “bad girl.” I was not allowed to refuse to hug the man who sexually molested me for a decade of my childhood because I might “hurt his feelings.” That’s pretty major, but there were millions of minor experiences along the way, chipping off my understanding of myself as something owned by myself and not something owed to the world around me.

 

Even something so seemingly simple as the constant pressure to smile. Everybody wanted me to smile. And I was told that I was such a pretty girl and ought to smile. And I was told that I was so pretty when I smiled. And it was so important to everyone that, after a while, I sat in front of the bathroom mirror practicing faces, trying to find the muscle-feeling that would make a smile. I practiced and perfected until I could make a smile on demand. I worked hard until I had a smile that made everyone happy and got them to quit bothering me. And now, when I am afraid that I am being a bad girl, when I am resisting what someone else wants, when I am feeling the pressure to be a rag doll again, to be whatever and whomever I am being asked to be, I put on that smile as a shield to protect the tiny scraps that are left inside me as I give in and give up who and what I am because the pressure to comply is so huge and so uncomfortable. And because I was never allowed to say no, never allowed to own myself, never allowed to not-want and still be a good-girl.

 

You do not want your child to grow up to be like me.

 

I live in crushing poverty. I live on SSI, Medicaid, and food stamps, which means that I live about 20% below the poverty threshhold. If I marry, I lose much of that and become dependent on my husband, stuck in a relationship that I can only hope stays good because I have no resources to leave. If I marry someone else on SSI, the two of us lose about 25% of our cash and resources, so I have strong incentive to live and love without the legal protections that marriage can bring. With the current political climate and the battle over same-sex marriage, I think most of us now realize what it means to not be allowed to marry. My situation is somewhat different in that I am allowed to marry but I am penalized so grievously if I do that it is not really an option for me.

 

Although I am so poor, I feel wealthy and fortunate because it is such a big step up from how I used to live. I have never been able to keep a job, which means before I started getting SSI, I was unable to consistently keep a roof over my head or food to eat. I spent a lot of time sleeping in the park, in public restrooms, on loading docks. I ate at soup kitchens and out of dumpsters and off what food I could steal. I entered into sexual relationships with strangers in exchange for a place to sleep and food to eat. It’s called survival sex and it was really easy for me because of my life-long training as a rag doll, compliant, always more concerned with what everyone else wants than what I want, feeling frustrated and worthless because, despite that strong urge to please I never could actually please anyone. So it was easy to give up my life, pitiful though it was, to someone else again and again and again in order to stay alive. My life was not worth much, but it was all I had and I clung to it.

 

Survival sex means abuse. Survival sex means being asked to do shocking and disgusting things — not even all of them sexual so you probably can’t even imagine the things I’ve been expected to do in order to survive. Survival sex means walking across the mile of bridge once again because someone thought it was funny to drive you out of town and drop you off alone, someone thought it was easier to deal with that slut they spent the night with by leaving her far away than risk that people they know might find out they were with her. Survival sex means risking your life, every day of your life, in order to stay alive.

 

You do not want your child to grow up to be like me.

 

I am well and truly disabled. I thought going to university would help change that, but I developed more disabling conditions while I was in university and struggling to comply. I didn’t feel worthy to ask for accommodations that might have helped me. I was brought up to believe that I have to do things the way everyone around me does them and even then I am of less value than them because almost always, they do it better than me. But I can’t ask for special treatment. I have to keep pushing to do it the way everyone else does. I begged to use a typewriter for school work but I was refused. I can’t have special treatment. I will learn. I will get used to the pain. I will get used to the agony. I just have to keep trying. I just have to keep pushing through. If I ask for accommodations, I am admitting weakness. I am asking for special treatment. I am getting there on an unfair advantage and it won’t count.

 

So I actually went through ten years of university without accommodations for my dysgraphia, my central auditory processing disorder, my vestibular hyperacusis, my dyspraxia (mild though it is), my periodic mutism, my shutdowns, my meltdowns, my hypernychthemeral syndrome, my visual migraines . . . and the depression and anxiety and agoraphobia this collection of misery brought on. Because the thing all those conditions have in common is the modifying pronoun: they are mine. They are mine and I am supposed to own them and take responsibility for them and budget my time and apply myself (because I am not “living up to my potential”) and conquer them. I am not supposed to ask for help. I am not allowed to ask for help.

 

You need to teach your child how and when to ask for help. It is just as important as teaching them how to say no and mean it.

 

You do not want your child to grow up to be like me.

 

Disability is about more than impairments or barriers to doing. Disability is about societal discrimination and barriers to being. I am not just disabled by my conditions. I am not just disabled by my difficulties in saying no and asking for help. I am disabled by the world around me and the expectations it puts on someone who looks like me (and writes like me!) and the attitudes it has about what I can do and what I cannot do.

 

I face strong discrimination every day. I am treated as lesser because I live on SSI. I am frequently accused of scamming the system by people who only understand disability as impairment in mobility or visible deformity. I am told, “you look just fine to me” by people who have never set foot inside a medical school. I am given unworkable “solutions” and told I’m ungrateful and not trying if they will not work in my life. Those who don’t directly say anything to me show through their behavior that they view me as lesser, they think I have given up, they think I didn’t try, they think I am lazy, they think I am living off their tax dollars. Every day, I hear someone say, “why should I have to work so hard to pay for people who won’t?” I live in a world that tells me every day, directly and indirectly, that I am a worthless parasite.

 

If I do not talk about being Autistic, I am viewed as an inferior example of a human, one who can barely get by, a slob who can’t keep her house clean, a lazy, good-for-nothing, welfare queen. If I do talk about being Autistic, sometimes I am not believed — because I can talk at all. I sometimes suspect most people don’t believe in my autism because they saw Rain Man or they saw Touch or they saw Change of Habit or they saw Mercury Rising or they saw Bless the Child or they saw whatever godawful made-for-TV movie-of-the-week that convinced them that they know what Autistics look like and I ain’t it.

 

Trust me, I was just as shocked to find out I am Autistic. When I grew up, most of your kids would not have been diagnosed. They say we have an “epidemic” of autism, a veritable tsunami of Autistic kids. When I was a kid, a good 90% or more of your kids would not have been diagnosed with autism. They would have been like me, labelled as “emotionally disturbed” and then treated and mistreated as mysteriously broken — often treated with “tough love” to try to break them out of their “willful disobedience.” Everything people say about your kids today? That they are brats, that they are spoiled, that they just need a good spanking? Those things were said about me, with the exception that I didn’t have the autism diagnosis or the modicum of understanding your kids have so I was spanked and tough loved and abused into who I am today.

 

I am not convinced that most ABA therapy is much different from the abuse I lived through.

 

I still see parents and teachers abusing children in the name of treatment.

 

Too often, I see a different label — autism — but the same lack of understanding surrounding it.

 

And those kids are going to grow up into a world that doesn’t want them, that doesn’t want to employ them, that thinks they’re scamming the system if they live on government support. The vast majority of Autistic kids are going to grow up to be adult Autistics like me. Even most non-verbal kids grow up to be verbal. Most Autistic kids are not going to grow up into the sort of adults that people look at and immediately want to help. Most of your kids will grow up to be like me. And that is criminal.

 

Adult Autistics have a staggering unemployment rate. It’s around 85%. Many of us would love to work but are unable to find anyone willing to give us a chance. In most cases, it’s not that we can’t work or won’t work. In most cases, it’s that there’s no one willing to accommodate our needs, including the need to be accepted as people who look, sound, and behave differently. People are uncomfortable around us. I strongly suspect that the “less Autistic” we look, the more uncomfortable others feel around us. If we are very visibly Autistic, we are “other” and that is easier to accept. Not-like-me is much easier to handle. But the more we look “like everybody else,” the creepier it is for others when we turn out not to be like everybody else. The higher the expectations that are layered on us, the bigger a failure we look when we’re unable to live up to those expectations.

 

Number one: don’t focus so much energy on making us look “normal.” That’s a waste of time. We’re not “normal” and we will never be “normal.” We are Autistics and we are better off when you focus your energy on helping us to be the best Autistics we can be. If we look “funny,” people will learn to handle that. They will get used to that. It’s more important that we feel safe, calm, happy, competent. It doesn’t matter as much what we look like getting there. If we flap our hands, if we don’t look people in the eye, if we communicate through typing or we speak in a monotone — it’s okay. Those are not the things that matter. But I see so much focus on those things as if getting us to look right is all that’s required to enact a “cure.” Too many people seem to think that if we look like everybody else, their job is done and we are “cured.”

 

But the monumental effort I put forth every day to try (and fail) to look like everybody else is sapping my talents and potential. All my energy, all my intelligence, goes into looking normal. There’s nothing left over to do a good job at something. When the most important thing is for me to look and sound like everybody else around me, all I have personal resources for is showing up. That’s all you can get out of me. And that’s not even enough for a job at McDonald’s. I know. McDonald’s fired me after two weeks.

 

You do not want your child to grow up to be like me.

 

I don’t have good answers. I don’t have easy answers. I don’t think there are good, easy answers. But I do believe that raising your child — if your child is an Autistic — is a much bigger task than just raising your child. If you care about your child, you need to be willing to reach out past your child. I do understand that raising a child, any child, is huge and takes all your time and energy. But if your child is an Autistic, you owe it to your child to reach past him or her and work on building a world that will accept your child. You have a responsibility to become an activist.

 

It starts with how you treat adult Autistics. Do you listen to them, or do you insult them? When they tell you how hard their lives are, do you get scared for your own child and push the adult away? Do you take their anger too personally because you are afraid you might not be raising your own child in a way that will keep them from growing up to be filled with anger? Are you afraid your child will grow up to hate you?

 

If adult Autistics scare you, do something! Listen to them! Take them seriously! Don’t treat them like children. Don’t tell them they can’t possibly understand your child because your child is different. No matter how much you wish your child were different, they’re not. They’re made of the same stuff as adult Autistics, yes, even the most scary adult Autistics.

 

Your child is just as vulnerable to growing up abused and discarded. Your child is just as vulnerable to growing up impoverished and angry. Your child is just as vulnerable to turning out the way we adult Autistics have turned out and not just the ones that inspire you. If you want your child to be someone who inspires you, you need to stop only valuing those adult Autistics who inspire you and instead value all of us. You will never understand how to help your child become the next Temple Grandin (or whomever your favorite adult Autistic hero is) if you do not take the time to understand how your child could become the angry Autistic activist who makes you want to cover your ears and hide.

 

How you treat adult Autistics — all adult Autistics — is how you are telling the world to treat your child in twenty years.

 

The kind of world you are working on building for adult Autistics today is the kind of world you are leaving your Autistic child to inherit tomorrow.

 

You are working hard to raise a healthy, happy kid. What are you doing to make a world that kid will be able to live in?

 

You do not want your child to grow up to be like me.

 

So what do you want for your child? Whatever you want, it requires a lot of work and that work has to come from you and that work starts today, right now, this minute.

 

What are you going to do next?

144 responses to this post.

  1. This is such a terrific post I am without words. Will share yours though!

  2. ((Thank you.)) Thank you for caring so much, for putting so much energy into helping us understand.

  3. This is an excellent post. Gets right to the point! Ha, I had it said to me once that I might have schizoid personality disorder too.

    Keep writing these! You’ve got a fine philosophical sense of important distinctions.

    I suspect you’ve (psycho)analyzed yourself successfully. You’ve thought. You’ve worked out solutions. But you had to keep many of your conclusions private, and for years. I don’t think this is as unusual as we may feel it is. Anyone who becomes self reliant at an age much younger than others think is right has to keep his or her mouth shut. After all, from the point where they acquire a separate regarding identity, they can interpret learning as compliance. This isn’t as unusual as you may think. Jewish kids were told that Jesus wasn’t holy or blessed, and that he was probably nuts. They weren’t allowed to say that to non-Jewish kids. Black kids have pointed out to them what’s racist and what’s not. Swiss believe in self-reliance and neutrality — a nearly unlimited right to say no, for which building the reserves to do so and get away with it can take years. Self-reliance training for Swiss kids starts in kindergarten when they walk to school with older children, separate from their parents.

    I remember as a child a very important incident when my school principal in pre-primary or first grade told my mother in my presence that there is not much a school can do for an exceptional child like me. My mom would refer back to that in my next school. But a self-reliant kid doesn’t just submit to that. I had many moments of great boredom, but I always worked out an accomodation where I could read while a class was going on. I just always had a book with me. Because I knew there was no other option apart from living death by boredom. I read for survival. I also read because if I participated I’d get in trouble. If a teacher said raise your hand if you know an answer I would have to learn not to raise my hand, because I’d always have the answer, but I’d learn, slowly, that someone else should be answering. And the realization, for me, would always be surprising and disappointing. It still is, always, disappointing.

    It’s my foundation case that people don’t mean what they say, since I was 4 year old, when they ask people to raise their hand.

  4. Magnificent. I agree that parents (and non-parental others intending intervention and support) of autistic children, need to become activists and because the world receiving their children is as you describe. I think that the way you and others are so powerfully deploying written language in this activism, is crucial. Ultimately we are role-modelling and researching and pioneering the capacities we want our autistic children to exercise across their own living.

  5. As another adult on the Autism Spectrum, I know how it feels to hear “You just need to work on your anxiety”, “Just be yourself, don’t try so hard” and so on and so on. They don’t know how hard we have to work just to function at times. My Aspergers is considered “mild” by most, because of my verbal skills but on the inside I don’t feel like I’m functioning all that well Nevermind “HF”. But something I am learning is that no matter what hand we are dealt in our life time, it usually isn’t fair. If we are sheltered and have things easy in some ways, we would have it hard in other ways. I’m not saying I like it but I
    guess I’m trying to accept that I will have to work extra hard to be in social situations my whole life.

    Thank-you for sharing such a vulnerable side
    of you here. It’s people like you who help shatter stereotypes. All I want from this life is to be someone who left my footprint behind and made a difference and to find a sense of peace.

    You’ve had a hard life, it doesn’t sound easy, but you sound strong. Hang in there, stay strong.

  6. Thank you for sharing your story with us. It is hard to hear, but important.

  7. ‘Calm, happy, safe, competent’ … I’m taking those 4 words to my son’s IEP meeting as he begins his life in mainstream schooling next week. So true. That’s what’s most important. Thanks for writing this.

  8. Thank you…I can not say for sure that I wouldn’t want my child to grow up to be like you. I can say that no human being should be abused, that societal stigma is devastating to experience. I can say that I know many Autistic adults to whom this has happened. I can say that your essay speaks to the myth of “high-functioning”, the myth that this is a quality of an individual rather than a result of complex interactions between an individual and her/his environment. But there are many, many people in this world who I would not like my child to grow up to be like. You are not one of them.

  9. This is perhaps one of best pieces I have ever read. Your honesty is immense as is your admonition to the parents. It is open, honest and raw and that is how it needs to be. Thank you. I think you are amazing. Please let me know how you feel about this being reblogged at Autism Sparkles. I believe parents need to understand this.

    • Thank you. I would be honored to have this post reblogged. I have a lot of respect and admiration for Autism Sparkles.

      • Thank you. I so appreciate you allowing me to. I have a great amount of respect for you as well :). So blessed to have met you!

      • Just thought you’d like to know we are getting some GREAT feedback on your writing :). Thank you….what you do and who you are matters SO MUCH!!

        • Thank you for sharing it and thank you for caring. hope it helps someone!

          I think most people now realize that typical girls tend to grow up with weak boundaries because of hw we/society raises women to diminish themselves and serve others instead. Well, take that and multiply it by about a thousand and that’s what Autistics grow up with. Because our thinking tends to be more black-and-white and because we don’t suss the social rules enough to just absorb the exceptions and because many of the therapies that help us fit in with the world also help us become even more compliant, we need special help when it comes to things like boundaries, self-care, and self-preservation. I feel very strongly about that.

          • It is already helping! Thanks to you many parents are already talking about how this will change what they do in their upcoming IEPs :). You rock, my friend. You know so much and I am so thankful that you share your knowledge with the rest of us :). Happy day, girlie!

          • Wow, I am stunned by the huge response! Thank you. This is overwhelming, but good.

          • It is a very good thing :)

          • Posted by MargieR on February 4, 2013 at 2:43 pm

            I was never diagnosed as Autistic, but I have had and still have some of the same symptoms you describe. I was born into a family all with high intelligence (academic). Compared to my mother and my brothers, I was the Village Idiot. I was physically and sexually abused at an early age and there was no intervention, even though I did tell people who should have been able to help me, but didn’t. Your descriptions of your social interactions and feelings especially growing up, but even inside as an adult sound a lot like I feel, most of the time.

  10. Reblogged this on Autism Sparkles and commented:
    This is a MUST READ for any parent who has a child on the spectrum or, honestly, any child that struggles socially or academically. I will tell you it is raw and real and there is NO sugar coating…but that is how it needs to be because this is written by a person on the spectrum who has lived it….and she is offering a very honest and REAL warning to parents. Even when the writing is out of YOUR comfort zone or makes your uncomfortable…KEEP READING. Do it for your spectrum kiddos because there lives will be richer for YOU having done so. READ ON, my friends!

    • I literally cried in parts but it is something that parents NEED to read. We need to be more aware of what our children are up against and how to prepare them and how to change the way the WORLD sees them. I don’t even know where to begin but this has truly opened my eyes in a big and significant way!

      • Posted by California Ballot Review on September 23, 2013 at 4:56 pm

        Thank you for caring. The comments here from parents who will advocate for their children’s boundaries and self respect are helping me cope with my anger today, which is at a level you don’t want to hear about.

  11. Wonderful writing. In that every “normal” child is different, so is every Autistic, and your essay hits that nail squarely on the head. Thank you for this gracious reminder that one can appear to be “normal” when the reality is so much different.

    As a mother to a child with Ausperger’s, I understand the frustrations behind the “looking normal” and being well-educated. He’s not “normal” and never will be. At 16, when most of his peers are getting their driver’s licenses, he knows that it will be at least another 5-10 years before he will be ready to drive on the road. My child battles every day with his ASD and must be enrolled in multiple music classes just to get through the school day, and he qualifies as a “gifted” student. Many people assume that he is just socially awkward because he is smarter than a lot of people when, in reality, he is struggling to make true friends because of his ASD.

    • If it helps his frustration, feel free to tell him that I didn’t start driving until I was 25 years old. And even then it was a real struggle! But I’m a good driver and haven’t had any accident more serious than breaking the plastic covering on someone else’s turn lights and knocking a collie-sized hole in a wooden privacy fence, so I guess I’m doing okay.

      Good for you and good for the school for letting him do the multiple music classes! I’ve talked before about the therapeutic power of music in my life and it sounds like it has the same effects on him. Encourage anything that helps him hold it together and keep his cool and make it through the day. For me, it’s music, hot baths, writing, and my cat, Fermat.

      And, yeah, people see what they want to see and rarely peer past the surface. As many Autistics before m have said: if you’re “high-functioning” no one sees your struggles and if you’re “low-functioning” no one sees your skills. I think I’m something like “middle-functining” so I end up with both sides of that equation, depending on the day and the observer. I’m sure your son struggles with more than anyone outside the family ever realizes.

      • Hell, I’m twenty-nine and I still don’t drive. ;)

        • I know people in their 30s and 40s who haven’t learned to drive yet and may never. Between executive function issues, body control issues, and sensory issues, driving can be an extremely difficult task. I even know someone with advanced degrees in astrophysics who is unable to drive. There’s no shame in it. It is what it is.

          • This culture is obsessed with independence (or the appearance of it), and driving is the ultimate symbolic Thing that people use to show it. It’s a rite of passage.
            As a result people tend to regard driving as some kind of inherent proof of competence and regard someone who doesn’t have a license as less-than. Which is weird, because lord knows I didn’t volunteer to live in cow country without a license, public transit, or even really more than one or two cab companies in reach.
            I think it’s the most irritating things I’ve been judged for because it means very little.

          • It’s interesting that we have ended up talking about driving, because the post I’ll be making tomorrow talks about the way I’ve been “punished” for walking. You are so right about perceptions and judgments!

          • I’m 36 and still don’t have a driving license. I’m so glad to be living in a culture where it’s perfectly fine to take public transport everywhere (and where there is actually decent public transport to start with). Most people assume it’s because of environmental concerns, or the cost of owning and driving a car (easily 300-400 euros a month), or because I don’t want to be stuck in traffic (the entire country is gridlocked in the morning rush hour). When I say I don’t have a license I do get some funny looks. But if I don’t mention that particular little factoid, nobody thinks twice about my doing everything by bicycle and public transport, and even act a bit jealous sometimes.

  12. Posted by Rebecca Logan on January 30, 2013 at 11:10 am

    As a grandparent raising two of my ASD grandchildren, I cannot thank you enough for that!! You have done a remarkable job of helping me to understand how I need to help these two youngun’s of mine. I wish things could have been different for you – and I have every intention of making sure things are different for these two. Your fortitude speaks volumes. <3

  13. Thank you, as a parent of a recently diagnosed 11 year old boy, you have given me some things to think about. I could go on to give examples about my own experience but I feel that’s not appropriate here so I’ll jump straight to the end and say, please accept my thanks for your inspiring words, you have helped me to understand my son and his daily struggles. I hope you find peace and your place in this world where you can feel safe and secure.

    • Posted by California Ballot Review on September 23, 2013 at 5:16 pm

      You seem to get it already. that is a relief. the coming years will drain your energy, but always remember your son cannot escape the constant hell on earth y’all created for him without help. we’ll get there some day but remember you have energy that we don’t because we spend all our resources on showing up and then we’re expected to tolerate abuse meekly and we can’t turn it off. the tea party has started threatening to post names and addresses of people on SSI and SDI for public harrassment, and i fear for the safety of my service animals who keep me alive if i bring them out in public, and your archaic and demonic laws prevent me from taking my medicine across state lines or saying much about how it would have helped me cope as a child – and does help some autistic children in documented cases. and I’m constantly disbelieved and made out to be crazy, what does the r—-d know about his own life? etc. I’m glad you get it, because we need y’all to really step it up on many fronts.

  14. [...] I had just read this blog entry [...]

  15. Amazing but I don’t have any other words. Too much visual and my speech is dropping out.

  16. I can’t begin to express how much I love this post. I’m not going to lie to spare the feelings of parents who think I’m some beacon of hope. How I look for the short term you see or read me does not reflect the reality of my daily life and experience.
    Much of the reason I learned to pass so well is to protect myself from the punishment of appearing abnormal.

    • Also, I can only maintain ‘passing’ for small periods of time. I face the public probably a total of 2-4 hrs a week.

      • I can relate, Ren. I go out once a week to play games with my Deaf friends and that’s the only time I leave the house. I pay all bills online and have groceries, clothing, toilet paper, etc. delivered.

        • I miss grocery delivery. Desperately. That is one of the two things I leave the house for – that, and therapy. And maybe to see friends a couple times a month. That usually involves drinking, though.

  17. Posted by kermommy on January 31, 2013 at 3:59 pm

    I feel inadequate to respond, except, yes. Hell, yes.

  18. Posted by Tia on January 31, 2013 at 4:09 pm

    Hard to read- but vital to read. This is perhaps one of the best essays I’ve ever read. I was sobbing (for all you have gone through and I’m sure this is the tip of the iceberg) while reading it and looking at my own son. Silently thanking the adults autistics I’ve met before or read papers of before who helped me realize that the school my son was in was destroying who he is. That the treatments being pushed on our family were not a real solution- that the real solution is accepting and helping him adapt to this world. Along with “Don’t Mourn for Us.” This will now be my go-to page to share with other parents of autistics.

  19. Oh thank you, thank you, thank you for this post. It’s not only brave and extremely well done, it provides backup for parents (like me) who feel that there must be a more respectful way than those currently touted. I place this among my top 5 “must reads” for new diagnoses.

  20. This is one of the most powerful, moving pieces I have ever read. And I thank you. For sharing and for being honest.

    THIS is why my husband (who was only recently diagnosed as Autistic) and myself do not want the standard therapies for our son. We research, we study, we discuss what happened to him growing up, and then we go from there. We don’t believe in forcing eye contact, or forcing our son to be hugged if he doesn’t want to be. It’s wrong, it’s always been wrong, and he has the right to say no.

    Thank you for making me realize we are doing the right thing. He’s come ahead in leaps and bounds without all the therapy to make him like other kids. You’ve let me see a bit more into his world. And I hope that you are able to find some peace and those around you who are so closed minded are able to wake up.

  21. Thank you for writing this.

  22. Hello! I run a blog called Think Inclusive… I would love to re-blog your piece. I know other people have asked you to re-blog it but I hope you would consider mine as well. Please let me know if you are interested.
    Thanks,
    Tim Villegas
    Think Inclusive

    • I responded to you on facebook already — yes, I am honored. I looked at your blog and it is a good one that I am happy to have my words in. Thank you so much.

  23. Reblogged this on Must Read Articles and commented:
    Salah satu hal yang harus diingat oleh orangtua anak berkebutuhan khusus: jangan sampai metode terapi dimana anak “harus” patuh menjadi pisau bermata dua sehingga anak tidak lagi tahu mana yang baik untuknya dan menerima saja semua perlakuan walaupun itu menjadi negatif baginya…

  24. Since I see that you are open to being reblogged…although I am fairly new to the more technical aspects of blogging, may I share your essay (if I can figure out how) on tagalogblog.com?

    • Yes!. I am open to all caring and repectful re-bloggings, so also anyone else reading this who might want to link or re-blog should feel free to as well, so long as you are not doing it to denigrate Autistics or spread anger or hate. These were hard things to write about, but I did them to help today’s children have a better chance in life so even though I am trembling to see how many people have read these words, that is what I wanted to happen so I am happy that people think they are worth sharing. Thank you.

  25. [...] A version of this article of originally published at Unstrange Mind: Remapping My World [...]

  26. Posted by Isador on January 31, 2013 at 9:20 pm

    Jesus Christ, I want to meet you as a little girl and adopt you and be there with you every day.

    I really have no words of comfort other than you are freakin awesome. And I am so, so sorry you had no one there to protect you.

    My SO is an aspie, my 10 yr old is an aspie and our 2 year old is also somewhere on the spectrum. I hope with all my heart and soul I am doing it right. After all, both my boys are my heart and soul, my sun and moon.

    It is tough, heartbreaking, tiring, frustrating, stressful being an autism mom. I feel I am always fighting (school system, insurance, stereotypes, etc), I am always driving (speech, OT, PT, martial arts, etc) and I am always questioning myself (are we doing too much, are we doing enough, should I let him get that frustrated at his math, should I talk to the teacher about him spending recess alone, should I take him out of advanced math, should i push for more early intervention, how much should i bitch this time that they are not following our plan that he is to use assistive technology (writing is painful for my oldest also), etc). It is also amazing, hilarious and there is so much love. I would not give it or my babies up for the world!

    You are a voice for so many who do not have one. And it is a beautiful voice. You are advocating for others though no one seemed to advocate for you as a child.

    As a mom, I just want to say how proud I would be to have you as one of mine.

    • Thank you, Isador. I wish I had the energy to respond to each and every person who has commented. I don’t, though I’m reading everyone and so happy for the support I see for my words but, more importantly, for the children. But your comment was extra touching and I wanted to say thank you to you specifically. So thanks!

      • Posted by Isador on January 31, 2013 at 9:59 pm

        YW. I liked you on FB so you’ll be seeing me around. (I also post some funny shite so keep an eye out!)

  27. Posted by Sheila on January 31, 2013 at 10:32 pm

    Reading your post I couldn’t relate more. The childhood, school, poverty, survival sex, dependence on disability and food stamps, inability to marry if I should ever want to, learning the acceptable social cues. All that and bone crushing loneliness for being the outcast that I am. I’ve an autistic son and a daughter who’s ADHD/bi polar, and I take your words to heart. I pray they never feel our pain.

  28. Posted by charissa on February 1, 2013 at 4:50 am

    Cool piece! I can definitely relate! Thanks for putting it together.

  29. Posted by Robyn King on February 1, 2013 at 5:32 am

    Such valuable information. As a teacher, I believe inclusion means everyone is included. Not molded into someone’s idea of the typical child.

  30. A trillion thanks for writing this. It’s time i wrote my own but it won’t be terribly different from this. Cyberhugs

    • Yes, write your own! Even if we went through exactly identical experiences, your perspective on it will be your own and your words will be your own and that has huge amount of value that you should never underestimate. If you feel the urge to share, do it! It is powerful and the world needs to hear what you have to say.

  31. This is truly a masterpiece. Thank you for staying strong enough to live and write this.

  32. So touched by this. Thank you.

  33. Posted by ange on February 1, 2013 at 7:24 am

    like you, I need validation. thank you for validating everything I have always felt as a parent and have been “disabled” by (severe anxiety, depression) for trying to parent my two boys to make sure they “don’t turn out like you.” it takes such a toll to protect my children, to go against the grain, and to teach my children to do the same.

  34. I am sorry for the abuse you endured. You have many struggles; I admire your fighting spirit and your fire on behalf of kids with autism. I hope as awareness grows that people will begin to understand more of the characteristics of autism and learn acceptance and even how to celebrate what is unique. My son has autism. He is amazing to me. The hardest thing as his parent is to find ways to help him navigate the world he has to live in and instill in him the belief that his uniqueness is in no way a negative. To me ‘success’ for him means the ability to be happy in his life, to love and be loved, to hopefully have the opportunity to do something he enjoys and make a living wage at it. But I know that means the NT people in his life need to do more than expect him to behave ‘normally.’ They need to open their minds to a new model of existing, one in which my son’s differences aren’t something that need to be cured — they are part of who he is.

  35. As a mom, I was a little scared to read this. You’re right. It does make me uncomfortable to read about how hard it is for adults on the spectrum. It’s so painful and there are days I can’t handle any more worry. I know that is selfish of me, but I am working on it. But, wow, I am glad I read this. It has evoked so many feelings.

    Surprisingly, you have validated me in a lot of ways. There have been so many times that others have said we are babying our son when we have accommodated him. For example, at church, in the last year he has told us how unbearable it is for him to attend the big Sunday school class, which is full of about 12 riled up kids. They sing, play games, etc. The leaders told me he was doing fine, but one day I observed and saw him practically in tears sitting under a table; that’s when he told me how awful it was for him. I took him out and haven’t brought him back. I give him the choice, but he always chooses to skip it. We’ve had people criticize, but I can’t make him deal with that level of stress (and for what? it’s supposed to be fun for kids. It’s obviously torture for him).

    Another time his SLP suggested that we start working on his cadence because it is so different from other kids. It will make him stick out more, she said. And I was livid. When I imagined having someone repeatedly criticize the way I talk, I knew I would take that as an attack on me as a person. I, as an adult, would either bristle and get defiant, or I’d feel like a piece of crap. So how would my son, a child, feel being constantly told he talks wrong?

    Anyway, thank you for reminding me what my real job is. It’s not to be compliant to a bunch of therapists (I too was taught compliance throughout my life, though not at the level you were–and I am NT–so I can only imagine what it had to have been like for you, and this has always been an issue I was scared of passing on to my kids, both autistic and NT, because I did a lot of things as a teen and young adult, merely because it never occurred to me that I could actually say no). My job is to help my son be at peace and happy. I don’t always know what that means. I know I fail pretty regularly, but I appreciate this post as a reminder of what’s really important.

    Sorry for such a long comment, but thanks for being willing to share so openly.

    • Long comments are fine!

      Yes, compliance is something that I think mothers of autistic kids often instinctively “get” because compliance is such a valued trait for females in general in our society. But with autism (male and female) there is the added issue of more “black or white” thinking, of feeling picked apart (I did get constantly picked at for not talking and later for “talking wrong” as you so accurately put it) and feeling like you can never be good enough, right enough, pleasing enough. So take all the compliance training that our culture puts females through and multiply it by at least a hundred!

      Good for you for letting your son skip the big Sunday School class! If he’s suffering, it’s not doing him or anyone else any good to be in there. I often got subjected to horrible experiences (probably fun for the other kids but horrible for me) based on the belief that it was important for me to “socialize with my age peers” and learn socialization. Socialization cannot be learned in chaos and suffering! So good for you to recognize that and act on it. You are NOT babying or coddling your son at all! You are protecting his sensitive nervous system so he doesn’t have to grow up in pain or fear. That is what mothers are supposed to do! Thank you for being a good mother to your son. You can’t know how much it cheers me when I see that!

      • Yes, absolutely.

        I, too, was sexually exploited when I was young (an older boy at school; I was 14 and he was 16), and I KNOW I only got into that situation in the first place because I DIDN’T KNOW I COULD SAY NO. I didn’t know that just “not wanting to” was a good enough reason.

        No one thinks we will ever grow up to have sex, so they don’t talk to us about it.

        That’s the biggest thing I want for the younger generation of autistics, especially the girls: I want them to know, from a very young age, that they are allowed to say no, and that they don’t owe people anything beyond “no.” You don’t owe them a Good Reason, you don’t owe them an explanation, you don’t owe them a “You’re very kind, but …”

        Just the no.

    • Posted by California Ballot Review on September 23, 2013 at 4:15 pm

      I’m glad you exist. people like you help me stay sane. please keep fighting. that discomfort is nothing next to my rage, and I’m glad you see that.

  36. Posted by Chou Chou Scantlin on February 1, 2013 at 9:00 am

    ❤ So profound. This is an extraordinary piece. I want to hug you and say it’s okay, and thank you. I count my blessings that, as an obedient autistic girl from another generation, it turned out okay for me. I have had my struggles, but have had much help, kindness, and protection. I am protected now. And love. You remind me it could have been so different. Independance may be great, but, oh, sometimes the cost! I have no answers either, just what works best for me. I found happiness. Was it luck? I am so sad that wonderful you, and so many others suffer or suffered. Yes, I want to hug you hard ❤

  37. Thank you for standing up and telling it the way it was however horrific. You are an extraordinary person and I do appreciate your input. I will share your wisdom and pass this on. I wish you were one of my kids, I would have been very proud to call you ours.

  38. Thank you for writing this. Thank you for your honesty. Thank you.

  39. You say “don’t focus so much energy on making us look “normal.”” This is such an excellent point. As the parent of a child with cerebral palsy, I see the therapy world taking time away the everyday kid activities she could be doing (watching TV, hanging out with her family) in order to enforce superficial ideas of what LOOKS normal (eating with her mouth instead of a feeding tube, walking instead of using a wheelchair). I try to help my daughter accept and love who she is, while encouraging her to acquire the skills she wants in life, rather than just the skills that will make society more comfortable with her. Thanks for this honest and thought-provoking post!

    • Posted by California Ballot Review on September 23, 2013 at 5:39 pm

      excellent point that this applies to persistent broad disabilities of many kinds. thank you for caring. i hope you make the time to fight too, after taking care of you and yours :)

  40. Posted by Bekah on February 1, 2013 at 9:50 am

    my friend shared this with me, and said she could have sworn I wrote it. I am so sorry that you have had the life you had, and that I had/have a very similar life, although I did go the “marriage route” and suffered severely for it, but these days things are looking up and I hope they continue. I appreciate you sharing this and I am VERY grateful for your points about Autism therapies for children. I have never been able to afford ABA therapy and didn’t push for it very hard because I know how to relate to my kids, and like you, I have sort of figured out how the world works, so I could help them in my own way…now Im glad I never bothered. I would HATE for my kids to go through anything like I did, and I have said “no you dont” to that same statement so many times myself. Thank you for posting this <3

  41. ….did I write this in my sleep? Because this is like, my life.

  42. Thank you for your post. This is important, painful, and scary. As a mom of 2 non-verbal autistic daughters (diagnosed just about a year ago) it gives me a whole new perspective. I’ve been advocating hard for them to be able to get ABA therapy and trying to get whatever therapy for them I can so they can speak to us, or communicate with us somehow. I also write a blog and would love to re-post your post on it for others to see. I must admit your honesty scares me for how to approach treatment for my two girls and also how to advocate for autistic adults. To be honest, I don’t even know many adults with autism, I’m so focused on the younger kids. That was convicting even in itself. Thank you for your words. You’ve given me a lot to think about.

    • Thank you, Lisa. Do feel free to re-blog. As for your girls, assume competence and approach them with the same respect you would have for non-autistic kids. That’s the biggest thing right there. Did you know that new research shows that letting non-verbal autistics use aac, typing, or facilitated communication tends to help them get talking sooner, if they are going to be able to speak at all? A lot of times, therapists have the old research and say don’t let your kids use pictures or communication devices because it will old them back but now they say that using pictures or other communication assistance actually helps kids master language sooner.

      This is not too different from what they learned with Deaf kids — they used to (and sometimes still do) say no sign because it will hold them back and isolate them but now they know that any kind of communication improves all kinds of communication. So don’t be afraid to try sign language, pictures, a letter board, AAC, Proloquo2go or whatever your girls take to.

      And look around and you will find autistic adults everywhere! My blog roll has a good list of adults to start with and also a lot of really good parents of autistic kids who are trying hard to respect their kids’ autonomy and help them to find their way in the world without losing vital parts of who they are. I’m glad you found your way here and I hope it’s just the beginning for a whole new way of looking at ways you can help you girls grow up to be the best, happiest, healthiest, safest, and most successful they can possibly be!

  43. Posted by marciakayx on February 1, 2013 at 11:52 am

    Like Bekah, I have so many similarities to you too. I didn’t realize I was autistic until my grandson was diagnosed. I was sexually abused, only not by therapists, by my father. I hated school, so I homeschooled my children and now I am homeschooling my autistic grandson. I do not trust him in the hands of anyone else is the main reason. I agree, ABA, to me would be torture. It is like giving doggie treats for desired behavior–desired behavior of the trainer. Thank you for this piece, well written and a life well-lived in spite of all that tried to prevent that from happening. Thank you so much.

  44. i wish i could have been your parent and helped you along the way. but since that can’t happen, i’ll take your advice, to heart and do for my child what you are recommending. he was just diagnosed last year and since then i am more adamant to give him a life of “safe, calm, happy, competent” instead of a life of conformity.

    i’m trying to figure out a way to begin an organization to benefit other ASD people. but your words have lit that fire i needed to get going with it.

    anytime you feel like you haven’t done something in your life with meaning, remember this mother. your words, life story, and advice will always remain with me.

  45. Wow, just wow! I wish I could go back and rescue you as a little girl. You so deserve(d) to know your worth and to be accepted for who you are. I know what it feels like to never feel like you measure up and always trying to please everyone.

    I am mom to 2 challenging kids, one of which has autism. I strongly dislike the idea of trying to make my daughter fit into the world around her by making her more like everyone else. I LOVE that she is so different and special and unique. I ENJOY learning how she understands the world around her and just learning about her. I looked into ABA when she was first diagnosed and knew it wasn’t for us. I guess I am fortunate that most of the people we have encountered seem to love and adore her the way she is. Instead of trying to make her fit into the way everyone else does things, they really let her be her and find ways to help her find her way in this world.

    What I am afraid of is when the “cuteness” wears off. What happens when she is no longer a sweet, beautiful little girl? Will they still be as willing to learn about her and accommodate her when she is a beautiful teenager? Will people stop trying to protect her and start taking advantage of her? That is my biggest fear. Thank you for reminding me that that is a reality.

    • Hi Christa,

      I’ve been unusually lucky, but I’ve been lucky in the way that your daughter is lucky, so maybe she will continue to have experiences like mine. Anyway, I haven’t been cute for a very long time* and people still help me. The last time I needed help from strangers, I was alone in an airport and having a meltdown. I gathered up what little language, and will, remained to me and approached an off-duty flight attendant, telling her I had autism and had missed my flight. She got into line for me and got me a new boarding pass!

      I *have* had at least one person take advantage of me; I don’t know how aware he was that that was what he was doing.

      *I was an angry, pointlessly defiant preteen, a nervous, misfit high-school freshman, a know-it-all older teenager and an impassive, hulking adult. I am arrogant. I talk too much, or not enough. I’m big, strong, and have been told I can be scary, though I am not most of the time. My demeanor sometimes reminds people of a trapped wild animal. I am almost thirty, not straight, an idiosyncratic dresser and stubbornly unfeminine. I make jokes no one gets, and allusions no one sees the point of. Sometimes people close to me might say something I’m doing, or an outfit I’m wearing, is cute, but it is definitely not an adjective anyone would choose to describe me generally.

      • Have you seen the meme “that’s what we call graduate school”

        http://whatshouldwecallgradschool.tumblr.com/

        check it out..push the “random” button you won’t be disappointed. One thing about autistics is that we carry guilt and remorse for a very long time. STOP calling yourself these names…you are PERFECT..it has taken me a very long time to shrug off society and live without the reservations that I have placed upon myself. THAT is why I call my website “Living Without Reservations” .

        You are perfect and there are people out there that will love you for you! Besides someone that can’t see how great you are doesn’t deserve to be near you. You know I take my self out on dates to remind myself I’m awesome. I just went and watched “pitch perfect” at lunch by myself..got myself a big coke, some popcorn, some candy…and I was so happy……..

        Women are hard on themselves, but autistic women are even worse.

        You are who you were meant to be! It’s ok to be us…..it’s ok to work like a Mac computer instead of a windows…it’s ok to NOT be compatible to everyone else….

        I’m looking forward to getting to know the amazing person you are..the courageous person i see hear being a self advocate..thank you for speaking up!

        LenaJeanne

        PS…..I’ll finish my PhD…but people won’t know how hard it is for me…..to get up and work! And I have my kids to look after so that helps I think!

        • “One thing about autistics is that we carry guilt and remorse for a very long time. STOP calling yourself these names…you are PERFECT.”

          Oh, don’t worry, I know. I was only using that to illustrate how, er, not an adorable child I am and people still treat me well.

          The other commenter was afraid that maybe people’s goodwill will dry up once her daughter gets older, larger, and less cuddly. I listed all those things, things that are true of me and that I am not ashamed of (indeed, lots of them I’m proud of), to help make the case that I’ve long since crossed over the “not cute” threshold, and people are still generally friendly and supportive of me.

          I was trying to reassure her that it’s possible her daughter, too, will still have generally good experiences with people once she’s no longer cute.

          Anyway, I know I’m awesome, you don’t have to worry about me. :) You are awesome too! (One of my undergraduate degrees is in biochemistry! I didn’t know how to go about getting into grad school, and getting it paid for, otherwise I would’ve gone on … I love molecules too. Only I think I’d probably rather study the brain than cancer biology, as interesting as the latter is.)

  46. Thank you.

  47. Posted by Autismum on February 1, 2013 at 6:07 pm

    Reblogged this on Autismum and commented:
    One of the most important pieces I have ever read

  48. Posted by Autismum on February 1, 2013 at 6:10 pm

    I reblogged. I hope that’s ok. Thank you for this post. I’m in a bit of an emotional state after reading it so I may come back to add something a little more coherent but, for now, again, thank you.

  49. Reblogged this on mad queer..

  50. Posted by Page on February 2, 2013 at 4:45 am

    I cannot begin to say how you have touched me with this article. Although I am not autistic, I do have a form of dissociative identity disorder, and everything that you wrote struck chords. About normality, and trying to pass as normal. As not being accepted for who you actually are, or having how hard it is to live with your differences recognised. I have some friends who greatly need to hear this, we need to know that there are others who are ‘other’ out there. Someone once told me that the greatest and hardest thing that a person can do is break an abusive cycle. You have done that here. It does not make your pain or suffering any less, or your circumstances any less difficult, but you have done an amazing thing here. Hopefully you can encourage others to speak up, break the cycle!

  51. Posted by Autistagirl on February 2, 2013 at 7:29 am

    Thank you for sharing this.

    I see much of my life reflected in yours, I was undiagnosed with autism (I was also mute and ‘non-compliant’), until 31 as my son was, he has Aspergers, and like you, I did not ever want him to grow up like me.

    I’m often astounded that so many families and specialists believe in normalisation and compliance, I’ve suffered immeasurably due to being forced and broken to be and act like some one and something I was not, “normal” to me is a violent, ugly word, one I refuse to use.

    I was and am woman, beautiful, perfect, innocent and gifted just the way I was born, but punished because “how” I was these things was not “normal” apologies for using that word.

    I’m extraordinarily lucky, that somewhere, deep, deep, deep down within myself, I found that glimmer of me, that final essence that had not been taken, abused, broken or destroyed and I held on to it, I cherished and believed in it, how? I do not know, I did use the Invictus poem, used by Mandela, I used music and art, I decided to be me, I decided to say “no” and I’ve become, like you the kind, or type of person many who have autistic children say ” I hope my child grows up like you, thank you, you’ve given me such hope!”

    This fills me with such bewilderment, I notice the faces change as perhaps my bewilderment has communicated itself non-verbally.

    I raised my son to be himself, no ABA, no forced compliance, no normalisation. He is a strong, healthy, assertive, extremely funny, well liked, intelligent young man, with self belief and a desire to go out into the world. He knows right from wrong, he still can’t write good, but he types, he has friends, girlfriends, a social life, an education…..it was not easy, it was slower than the typical much spouted “therapies” ABA specifically, but I promised, vowed to myself when I fell pregnant that MY child would be a happy one, it never once occurred to me since then to have my child any other way.

    Sure he will have his trials, his ups and downs, but his life will be nothing like mine, his story, will never be mine.

    Thankyou so very much for sharing this, so many live in a bubble and don’t think about the possible dangers (they may fear them) of denying a child from being who they are.

    If I could, I’d hug you, and I wish you well, I wish you love and joy, those things that are often denied to people who’ve experienced such lives, but I see that you have found some, and like me, you’ll know deep down there are so many tiny and wonderful joys ahead, to hell with the rest!!

    Autista xxxxx

    • Thank you, Autista! What an awesome comment and what a terrific job you’ve done of mothering!

      • Posted by Autistagirl on February 2, 2013 at 9:12 am

        Thank you for taking the time to read it!

        I considered carefully whether to reply to you or not, but, as I read through the replies, the fears, the strain, the worry of parents whose children are diagnosed with ASD, I felt I had to…

        If your child is loved, cherished, believed in. If you approach your child with respect for their feelings, in equal measure to your feelings regarding their needs in learning, training and education and banish the desire to make them something other than who and what they are – you’ll be doing it right. I want them, the parents, like you, to know this, my son is (not scientifically) proof of that.

        The negative prognosis, I was given as to how my son would turn out, this prognosis does not exist, not even a shadow.

        It’s important, very important that you continue to tell the world about your life, your perspectives, what it is that you have learned from these things. You have the courage to be honest too, just look at how many lives you’ll have perhaps saved, the potential added fulfilment in these lives – good for you!! Keep going, I’m hooked!!

        Autista xxx

  52. Posted by Opus the Poet on February 2, 2013 at 12:04 pm

    I have a brain injury that results in a condition that is much like autism, or Asperger’s. I had the advantage of coming from a position of being established as a human being with a place to live and relationships from before my brain damage, but I have the disadvantage of people that don’t know I have brain damage thinking I’m “normal” because I retain a small part of my ability to interact with people. The thought of being in this condition all my adult life like you terrifies me beyond words. At least you have enough to actually live on because of disability, I can’t even get that much.

    What really scares me is that there are people like you attending my church, who have even less ability to navigate the system to get help. The irony of this is if you really need help, you lack the ability to ask for it in a way the “system” understands, and if you can navigate the “system” then you don’t really need help, you have the cognitive skills and mental toughness to actually get work. Unless people like us have an advocate navigating the “system” for/with us we don’t stand a chance.

    • I actually don’t have enough to live on with disability. Because I was born disabled and have never been able to pay into the system, I was only eligible for the minimum level of disability, SSI (supplemental security income, a program designed to augment regular SSD, not to be lived off solely on its own) and even that levle of disability payments I was only able to get after years of trying — I wasn’t getting refused, but I was so struggling to survive that I would apply and then become homeless and be too involved in the day-to-day details of staying alive that I couldn’t follow up on my case in time and it would lapse. When I was finally able to stick with the process long enough, I was approved almost instantly (which meant I got no lump sum and had a really hard time renting a place to live.)

      On SSI I get about $100 less per month than it costs to live. While I was still well enough to attend school, I made up the difference by getting student loan money to bridge that gap (which means I now have a massive student loan debt.) When I became too ill to continue in school, I lost that cushion of loan money and was about to become homeless, despite receiving SSI disability and food stamps, despite being one of the most frugal people around, despite having a seriously below-market rent due to living in a place with holes in the walls and floors and no heat and no running water in the kitchen and having been here for a decade so my rent has lagged behind inflation.

      The only reason I still have a roof over my head today is that someone online who is in charge of a private grant fund heard about my situation and offered me a small grant to bridge that gap until I can figure out some means of supporting myself. That person is my advocate and has quite literally saved my life because with all the health problems I have now, I don’t think I would survive being homeless again. And without that person stepping forward to help me, I had no idea who to turn to for help.

      • Posted by Bekah on February 2, 2013 at 8:55 pm

        Do you get both SSD and SSI? Do you know if they give you both for multiple disabilities? I get SSD now, and used to get SSI for a physical disability entirely unrelated to AS, and then all of a sudden it changed to SSD…but I never applied for it, they just sent me a check for SSI when I turned 18…so I have no idea how it works (maybe my parents got money and when I became an adult they sent it to me instead?) Im asking because I cant work either and the SSD (and SSI) are no where near enough, but both at around the same rate would at least be comparable to a part time job and would help tremendously.

        • I know the rules are different for people who start getting disability before they are 18, but I don’t know those rules because it’s a different situation from my own, even though I was disabled before age 18, just not on government disability back then.

          You may be getting less if you’re still living with your parents because the government may be looking at their income and saying, “well, you don’t pay rent so you don’t need that money and you don’t pay utilities so you don’t need that money,” etc. The problem with that is that it leaves you stuck where you are because how could you move and start paying rent, utilities, etc. if you don’t have enough money for a deposit or first month’s rent and you can only promise the landlord that your income will go up at least a month after you move in …. but will only go up that amount so there will be that one month of rent that never gets paid and you go into your life as an independent adult already in debt and scrambling to play catch-up!

          The way money for disabled people is handled in this country makes me angry because all the rules seem designed to keep us in the hole and pushed down as much as possible.

  53. Posted by Mariah McCord on February 3, 2013 at 12:33 am

    My first thought as a grandmother of a toddler who may or may not fall somewhere on the autistic spectrum is this….for all of their lives we must love these precious gifts from above at the place where they themselves are “at”. This is the beginning of acceptance and celebration of who they are.

  54. Reblogged this on contemplativemusictherapist and commented:
    As the mother of a child with high functioning Autism, this post moved me beyond words. Please read.

  55. Wow. This is powerful. Many people think I am crazy for pulling my 4 year old out of intensive treatment to try to treat her and teach her like any child. I am homeschooling, using floortime, and I spend a lot of time trying to understand her and build a bridge between us. Articles like yours help me keep my perspective. Thank you.

  56. Posted by jaynn on February 4, 2013 at 9:24 am

    “But the more we look “like everybody else,” the creepier it is for others when we turn out not to be like everybody else.”

    Sounds like the equivalent of a human uncanny valley. And maybe it is. I ‘passed’ for a long time–okay, so I still do, I just know better now–and it meant a lot of time and energy spent trying to be normal, trying to be like everyone else, while not understanding how or why I was failing so badly at it. I wasn’t diagnosed with anything until I was an adult, which meant growing up on one level knowing that I was different, that something was ‘wrong’ with me, but not knowing what made me different and being totally unequipped to navigate a world full of people unlike me. And trying to deny that reality just made things worse. (Last time my parents visited Dad blamed my last year of college on my husband. In reality it was the culmination of years of untreated depression that began back in high school.)

    People want us to be like them, and the closer we are the easier it is to deny any differences, which only ever makes them feel better while making us feel worse.

    • Yes, the first time I read about the Uncanny Valley theory, which is usually applied to robots, it made perfect sense to me because it exactly described my life. I didn’t mention Uncanny Valley in the post because some Autistics feel triggered by being compared to robots and I didn’t want to make anyone feel bad by specifically applying a theory from robotics to Autistics. But yes, that. You are spot on.

      I also liken the situation of the very social-seeking Autistic to that of the “game” of Painted Bird as described in the Jerzy Kosinski novel of the same name. The main character meets a professional bird catcher who entertains himself with the cruel game of painting a bird a different color and then releasing it. The bird wants to follow its instinct to stay with the flock but the flock sees a strangely-colored intruder and attackes the painted bird, trying to drive it away. Because the bird’s instinct to stay with the flock is so strong, it continues to pursue the other birds, even as they peck it to death.

      This is the lot of the child with Asperger’s/Autism who is set loose on the playground in hopes that they will eventually “fit in.” If the child has any drive toward socialization at all, they will continue to pursue interaction with the other children who, in turn, attempt to “punish” the Autistic child for their social errors with censure, mocking, bullying, or even outright abuse. Emotionally, a child put in this position is progressively “pecked to death” by the other children who can see the paint clearly and believe the child is not “part of the flock.” The child, unaware of their vivid coat of “paint,” keeps coming back for more, sometimes even mistaking abuse for friendship because when the other children are abusing the Autistic child, at least they are paying attention and interacting with her/him.

      • Posted by California Ballot Review on September 23, 2013 at 6:20 pm

        yep. in grade school, most people beat me up so bad or cared so little about my pain, or abused me in other ways like my parents, that i was glad to spend time with a group of 3 other boys who treated me like dirt. the other boys would laugh but these 3 didn’t hurt me physically, as much as i was hurt in other ways. the ringleader was a lot like my dad, except all white (we were mixed jewish which also marked me as different in school) and even more capricious – my dad ultimately cared about preserving some use in me, thinking he could use me to get rich. the other kids could take or leave me, not realizing how smart i was.

        i think the rain man idea was straightforwardly inspirational in a capitalist sense to my dad, with no ethical complications. he tried to get me interested in reading blackjack decks and things like that, and i eventually figured out that i had to pretend not to be improving in order to get out of it, but i still didn’t understand what he had been trying to do to me until years after his death. i just thought it was wrong because i didn’t want to play and that was that. now i understand why he wanted me to do lots of math but not get a job or read marx. but there you have it – some parents are just abusive narcissists and if we rely on kids to report stuff, how are we going to find them all? i don’t know what the answer would or should have been.

  57. Posted by Sara on February 4, 2013 at 9:53 am

    As a spouse of an Aspie and a mother of a so-called ‘high functioning’ autistic boy, I appreciated this a lot!

  58. This is brilliant. Honest. I never read things this long but I had to continue. I sit here in the room where my ten year old autistic son will probably be up all night and feel reassured that I’m not a crazy weak parent. Thank you.

  59. I would like to interview you for my podcast A New Spin On Autism: ANSWERS!

  60. I feel the same way as you…I have autism, I’m a single mother to two children with autism. I have 3 BS, I never finished my master’s totally..everything BUT defense…and I have now entered into my 3rd year of my PhD in biochemistry. I also have an autism blog http://www.livewithoutreservations.com and I started my own lotion company….

    But I feel if you have raised your autistic child to be like me then you have failed. I worry that I fail my own autistic children. I’m not the person ANYONE should ever hope to be. I barely have motivation to eat…I can’t say No to people…I have very little backbone unless it comes to my kids. I love my research..I work in pancreatic cancer, but I’m afraid I’m going to quit it like I quit everything else. I want my MD after my PhD, but I’m just about 33 years old….

    What everyone doesn’t understand is the reason I’m getting my PhD isn’t so much that I desire it, but because I’m good at school and not at work. Research is not a real job..there are no set hrs and I can make my own rules..I have very little contact with people and I like my molecules and cancer cells more than people.

    Thank you for being honest!!!! It is refreshing!

    • LenaJeanne,

      That is exactly how I ended up going so far in my education as well. There is a cartoon called “Piled Higher and Deeper” that has a t-shirt they sell that reads, “Grad School: Better Than a Real Job.” There is a lot of truth to that! Where I hit the wall with school was when I got to the point in my program where I had to teach classes. I couldn’t secure any accommodations sufficient to permit me to be able to teach classes and so I couldn’t finish my degree. (I call it ABD but it’s actually ABTH&D – all but teaching hours and dissertation.)

      Thank you for stopping by! I’m going to check out your blog now.

  61. [...] version of this article was originally published at Unstrange Mind: Remapping My World, and is reprinted here with the author’s [...]

  62. Posted by ru on February 7, 2013 at 7:45 am

    This is so profound in so many ways, to be honest.

    Yes, yes, yes. I do wish when I was a child I actually learned to refuse, to say ‘no’ in an assertive way instead of being a yes man (and when I finally say no, I don’t do it in…well, let’s just say, a healthy way. It was always a bomb exploding.) It doesn’t exclusively has to do with my autism; I do think the fact that I’m the first sibling counts as well because my mother always ask me to be relent. But of course there is this ‘passing’ that also requires me to be more passive and meek, so I guess it is kind of related.

    Bottom line, this post is so, so, beautiful. Thank you for sharing :)

  63. Posted by Silvia on February 8, 2013 at 1:06 pm

    Wow, what a fantastic and thought provoking piece of writing! Thank you so much for your generosity in sharing stories of your life with us. I admire your honesty

  64. Posted by Gina on February 8, 2013 at 5:43 pm

    I live in the DC area and I have a daughter with PDD-NOS. I am also worried about the poverty mentality and reliance on the government that is pushed on people in the ASD community. Why are we working so hard to self reliance from 1-17 just to undermined it all at 18. If there is a march, protest, or a table tossing. Let me know how I can contribute. I can toss a banquet table if I am angry enough.

    From a mother ready for a revolution.
    P.S. I am proud of you for speaking the truth. This is in the dark part of every parents mind and you have shed light on it. I do want my daughter to be the like the best parts of you. Strong, honest, and brave as all get out. Do not sell your self short.

    • Posted by California Ballot Review on September 23, 2013 at 6:28 pm

      read The Misbehaviour of Behaviourists and the other documents on that website, then read up on the current law regarding ABA in your state and schedule a meeting with the legislature to bend their ear. i hear in Maryland it’s mandatory. to me it’s inherently abuse and you will be shocked at what you learn about its purpose, its effects, its creator and his involvement in the gay conversion camps now illegal in CA and NJ.

      to find autistic citizens/residents to stand behind you, talk to ASAN, AFF and AUTCOM, post on Craigslist, and search (but do not appropriate!) the #actuallyautistic tag on tumblr.

  65. Posted by nomieb on February 10, 2013 at 11:56 am

    My husband and I have discussed home schooling our child because of this issue. You have convinced us! We will protect our child from what you have been through. I wish there had been someone there for you. You may have saved some children your pain! I wish more for your life. Thank you for having the courage to share.

    • Thank you, nomieb. I used to beg to be homeschooled because of all the terrible things that happened every day at school but I feel like my parents believed what the school said more than what I said, so they were willing to frame my struggles as “bad behavior” and I was refused homeschooling, being told that I wasn’t going to be “rewarded for my bad behavior” by being allowed to stay away from a toxic, abusive, damaging environment.

      It reminds me of my later experiences in mental hospitals. If you are genuinely sane, you will recoil at the way you are treated in a mental hospital. But if you recoil, they will describe that as being resistant to the therapeutic process and refuse to release you. The only way to get out is to go limp at the center of your being and co-operate in your diminishing and not only let others abuse you, but thank them for the abuse. What is eventually released from hospital is a broken shadow of a person.

      Many schools are not so different. Except that there is a light at the end of the tunnel — the anticipation of aging out of the institution. So the difference for me bewteen school and a mental asylum (neither of which being places I belonged!) is that I did not go limp and I continued to recoil until the day I was able to drop out of school and escape. This is not what I would wish for any child! I am so thrilled to hear that you are going to home school your child. Always believe her/him when s/he tells you what school is like. You know your child better than an education system ever will. My best wishes are with your whole family!

  66. [...] is expected is bad for the autistic person (short reason for that: abuse). One writer speaks of being forced to hug her molester lest she ‘hurt his feelings’, another of learning to suppress her pain until she is no longer aware of her own emotions. Both of [...]

  67. I can’t tell you how much this means to me. Though circumstances differ i see so many of the same patterns in my life and desperately trying to raise two kids to come out better. It’s hard to find people who won’t quit on you in life, I never even knew what was causing my trouble until a few years ago.

    • Thank you, Carol! I hope things are looking up for you these days and I hope your two kids have it easier than we had it! Keep up the good work; raising healthy children is one of the most important jobs on this planet!

    • Posted by California Ballot Review on September 23, 2013 at 6:32 pm

      thank you for treating our separate kinds of struggles with respect, Carol. i wish i were always so level headed. this post has gotten the most amazing allistic commenters.

  68. Posted by Ben Stansfield on February 13, 2013 at 9:28 am

    “I strongly suspect that the “less Autistic” we look, the more uncomfortable others feel around us. If we are very visibly Autistic, we are “other” and that is easier to accept. Not-like-me is much easier to handle. But the more we look “like everybody else,” the creepier it is for others when we turn out not to be like everybody else. The higher the expectations that are layered on us, the bigger a failure we look when we’re unable to live up to those expectations.”

    I’m going to have to print this out, mostly for me, but maybe also so I can explain it to others.
    I don’t really know how much of why I appear like everyone else has to do with the relentless hamster-wheel of “looking normal” that I discovered around age 15, or whether I would appear this way anyway. I do know that at age 43, I am thoroughly exhausted by it, and sad deep down because I’m not sure how to stop.
    I’m also super-sensitive to social pressure, while at the same time resentful of it, and critical of it. This is probably a way of exerting some form of intellectualized control over something that, really, I can’t control at all.

    Thanks for writing this down for me.

    • Thank you, Ben, and yes it IS exhausting. In my case (and I’m not so much older than you. I’ll be 46 next month) I am so worn out by it all that I can no longer keep up the appearance. I’ve developed physical illnessess — some of them auto-immune related, some of them stress related, some perhaps a combination of the two — and my energy levels are very low and easily drained.

      There’s a great essay online called “Help! I Seem to Be Getting More Autistic!” and it talks about the effects of Autistic Burn-Out, which I’m living. It does make me ” look more autistic” because I just don’t have the strength to keep it up anymore. This is one of the reasons I’m so vocal about the damage that is done when Autistic children are trained to ” look normal” at all costs. It’s damaging and it’s draining and it’s disabling.

      I’m glad you found something useful in what I wrote. It makes the effort all worthwhile! Thank you. And do take care of yourself! Stress is a killer and even though you don’t know how to drop the training that was drilled into you from an early age, do try to find ways to be gentle with yourself and try to never feel pressured to push yourself past your limits. And people WILL pressure you, because they don’t see what you struggle with and don’t understand the consequences of urging you to “try harder” when some things are neurologically wired in Autistics in such a way that it harms us if we ignore the discomfort and just keep pushing.

  69. Posted by Beth on February 17, 2013 at 9:47 pm

    Thank you so much for this. I have two nephews on the autism spectrum and this made me think about my interactions with them – do I help them to be happy on their own terms, or do I expect them to conform to my idea of what is normal?

    Instead of working so hard to train people with autism to be ‘normal’, maybe we should train EVERYONE to be welcoming of difference. And how about we teach people to withhold judgement of other people’s lives? It sickens me that people would add to your struggles by criticizing you for seeking the help you need. What better use of our tax money is there?

    • Thank you, Beth. Your nephews are fortunate to have someone so thoughtful and caring for an aunt! Here’s wishing the best for them and you and your whole family!

    • Posted by California Ballot Review on September 23, 2013 at 6:36 pm

      thank you for caring, Beth. please keep up the good fight for us.

  70. [...] pieces about why it’s harmful to force autistic children to act “normal”: No, you don’t and The cost of compliance is unreasonable. -Bitter pill: why medical bills are killing us. -If you [...]

  71. […] leave you with a quote from an autistic blogger,  ”The kind of world you are working on building for adult autistics today is the kind of […]

  72. Posted by Sarah on August 2, 2013 at 7:32 pm

    This is really good, thank you for helping others understand a little more! I am sorry for all the pain you had to endure, thank you for sharing your life with us, as a mom to an autistic daughter I am constantly trying to learn more and help her and always be there for her.

    • Posted by California Ballot Review on September 23, 2013 at 6:38 pm

      Thank you for caring and for using autistic-first language, Sarah! keep up the good fight for us.

  73. […] time, I didn’t really have the words for why ABA was not feeling good.  And then I read this.  And it REALLY didn’t feel good.  I wrote, my most popular post, to date, The Cost of […]

  74. Thank you for sharing. Your message is heard. Please remember, the loudest parents do not speak for all of us. We have so much to learn. I want to listen x

  75. Reblogged this on Walkin' on the edge and commented:
    by unstrangemind.wordpress.com

  76. Posted by Carlie on November 2, 2013 at 8:27 pm

    I’m so sorry you’ve endured such mistreatment. Thank you for sharing these difficult truths. My son was recently diagnosed as autistic and I’m trying to learn what I can.

    • Thank you. Remember that when I say “No You Don’t,” it means there *is* a choice. Your son doesn’t have to go through the kinds of things I went through. You have the first weapon in your arsenal — his diagnosis. Be grateful for that. Right now, it might seem like there’s nothing to be grateful about, but there is. He was already autistic and now you know and that means that now you have that information and can use it as a wedge to crack open a chance for a bright life for him. It probably won’t look like the kind of life you imagined for your son when you were pregnant with him, or when you were holding his tiny newborn body in your arms, but it’s a better life in this way: it’s not a life imagined for him, but a real life that he (and you!) will build, brick by brick.

      We don’t know enough about autism yet to be able to predict exactly what his future will look like. Autism over the lifespan is still a mystery to professionals and we have only had adults talking and writing about our autistic lives for a very short amount of time — about thirty years, total. You are embarking on an adventure with your son and the roadmaps are still being sketched out.

      There are some very good blogs by Autistic adults and by parents of Autistic children in my blog roll on this site. I hope you explore them. They are really good people and can help you in this part of your journey, especially if you feel confused or upset in any way. And, of course, I am here for you. I am rooting you on and cheering for your son. So often, people hear that diagnosis and they grieve because it feels like a death. If you grieved or are still grieving, it’s okay and normal. Don’t feel guilty for those feelings if you have them.

      But also feel really good about what you’re doing — looking for more information, trying to learn, searching for those clues that will help you understand how to be the kind of beautiful, loving mother your beautiful, loving son needs. How to understand his language. How to enter his world and meet him on equal footing. How to give him the kind of mentorship and guidance he will need on his exciting journey toward adulthood.

      welcome to the family. I am rooting for you both and there are so many others of us rooting for you as well. Seek out the ones who are helpful and positive. Seek out the ones whose messages are full of love. And thank you for reaching out to us. We are here for you.

      • I would like to add my voice to Sparrow’s. She said it so much better than I ever could. But yes. To all of it.

      • Posted by Carlie on November 8, 2013 at 9:23 pm

        Thanks for the encouragement. :) I think the wait and process leading up to the evaluation was long enough for me to be sufficiently skeptical but eventually come to terms with the diagnosis before we got it, (though I guess it was a short wait compared to most that I’ve heard about now). We have extended family or friends who have pretty much rejected him as autistic OR given “sorry to hear that,” and those are both pretty annoying reactions. It was difficult for me to consider earlier in the year, because I had trouble seeing my son with “symptoms,” and some days or weeks would be less challenging for him. He’s just himself to me and thankfully able to verbalize his reasoning behind much of his quirkiness even the big things that really upset him unexpectedly.

        Anyway, by the time we finally heard his diagnosis officially, I was truly relieved. Early in the process, some people involved (his preschool teachers who had first brought up their observations as well as people from the special education agency that covered the evaluation) had said they couldn’t really tell either way if he was autistic, and I began to worry that he would not qualify for services that he clearly needs if he had no diagnosis by the end of the whole process. So I get what you’re saying that it is good to have the diagnosis. This week I visited some preschools (he’s almost 5) and found one that I feel very good about, which is HUGE, because I was worried that I might not find a place that I trust to really CARE for him. At least until we figure out Kindergarten, but one step at a time…

        Thanks again

  77. […] never change. But by discounting the experiences of adult autistics simply based on the fact that they can communicate NOW, these parents are missing out on a ton of information, resources, and support that they will not […]

  78. […] are some other posts out there that can tell you about the effects of this kind of training and why it’s […]

  79. I hope it’s ok that I linked to this post in a LinkedIn discussion touching on ABA. If the newer practitioners are not aware of the experiences that autistic adults are sharing, I am doing my best to signal-boost their words and experiences. If they know, maybe they can help change things from the inside out. Thank you very much for your words. I bought your book and have recommended it on LinkedIn as well.

    • Yes, it’s okay that you linked to this in the discussion. Thank you for your kind words and for your support and thank you for signal-boosting the words of my Autistic brothers and sisters. You are definitely being part of the solution!

  80. […] bullying, depression, lack of understanding, medical challenges, marginalization, disrespect, abuse, […]

  81. […] Therapists move children’s bodies and without asking, put their hands over children’s to make them perform desired tasks (called “hand over hand”).  Then they punish children for “non-compliance” when they say “no.”  These practices teach children that their bodies are not their own and erases their boundaries, leaving them vulnerable to physical and sexual abuse. […]

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