Posted by: E (The Third Glance) | February 15, 2012

Growing up Autistic: On Nature, Nurture, and Abuse

When I told a friend of mine who I’ve known since 6th grade that I was Autistic when I found out in college, she responded: “No you aren’t. You’re just a product of growing up with your (insane, abusive) mother.”

While I don’t doubt that some of my difficulties and social isolation are due in part to my parents’ abusive tendencies, one must also consider the root of those actions in the first place.

My parents took a “Harry Potter” approach to my upbringing. They knew I was Autistic (and kept it from me), and even before my official diagnosis, they had every desire to stamp it out of me, and took every opportunity to extinguish anything that might be related to my Autism.

(note that irrelevant pieces of text have been omitted here. This is from “Harry Potter and the Sorcerer’s Stone” Chapter 4: “The Keeper of the Keys”)

“You knew?” said Harry. “you knew I’m a – a wizard?”

“Knew!” shrieked Aunt Petunia suddenly. “Knew! Of course we knew! How could you not be, my dratted sister being what she was? Oh, she got a letter just like that and disappeared off to that – that school – and came home every vacation with her pockets full of frog spawn, turning teacups into rats. I was the only one who saw her for what she really was – a freak!”

“Now, you listen here, boy,” [Uncle Vernon] snarled, “I accept there’s something strange about you, probably nothing a good beating wouldn’t have cured…”

My texture/sensory issues with clothes and food were a constant battle. My mother has called me a prude since 3rd grade. My special interest was beaten out of me, to the point where I would hide books in my bed and read them only in the dead of night for fear that I’d be caught. It’s amazing that I’m still interested in it today, given what I’ve suffered through because of it. When I tried to remove myself from stressful social situations, I was dragged back in forcefully, and physically restrained so that I wouldn’t try to leave again. Whenever I didn’t look at someone in the eyes properly when they were talking to me or I was talking to them, I would get backhanded or yelled at. And stimming was absolutely out of the question. I’ve gripped my hands together so tightly to avoid stimming in front of my parents that I’ve actually dislocated my own fingers. I’ve gauged my nails into my skin so deep it’s bled, and bitten my fingers and arms enough to leave scars, all to stop from stimming. Meltdowns were not an option. When I was in high school, my mother would take away my textbooks and yell at me to go out and party. Anything related to my Autism was punishable, regardless of the actual magnitude or relevance of the offense. Did this make me exhibit Autistic traits? No – if anything, it made me hide them, often to my own self-detriment. It was because of my Autism.

I exhibit more than enough autistic traits to earn me a spot on the Autism spectrum, and have my whole life, though I learned early on that if I let them show it was going to be bad. Yes, my parents my have increased some of them, but as horrible as it is, I might argue that the abuse I suffered through growing up has helped me to function as an independent adult, and has given me more of an ability to “pass” for NT when I need to. My drive for independence (and to get away from my family) was so strong that I am able to live on my own, at age 22, and have been paying for myself and school since I was 20 (19 if you don’t count tuition). I can feed myself, do my laundry, and get myself to and from work. Although I do not, under any circumstances agree with my upbringing and what I went through, I cannot deny that I turned out pretty much ok. I’m happy, independent, and doing what I love to do. I’m a productive scientist in an extremely prestigious PhD program. I didn’t have an official label growing up so people didn’t judge me by that (though they did judge me based on everything else). I don’t doubt that my parents thought they were doing the right things, and that they tried to do their best by me. And I don’t doubt there are many other (significantly better, less painful) ways to have learned the lessons I did growing up. But I can’t change the past. I can only change my present and future. I am Autistic. I was abused for it. My whole person was trained to be invisible and I was taught that I didn’t matter.

But I’m not invisible anymore. I’m here, and I’m me, quirks, obsessions, passions, stims and everything else that makes me unique. Look out world, here I come.

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Responses

  1. I have a son with autism. He’s 26 and a step father, devoted husband and as quirky as hell. We love him dearly because of those quirks. He was raised by his grandparents and, like you, was abused because of his “issue” They never told his father or I that he was autistic. HE didn’t even find out till he was 20 and was living in my house. I made him go to therapy because I knew, after only a week, that he was “different” Since his Dx, he, and I, have done extensive research and he’s in college now. He has Asperger syndrome and does well until he tells someone he has it. Then he’s shunned for the most part. Sad but true, you have been abused, but you came out not only a survivor but a THRIVER. Congrats and keep up the great work!!

    • Thanks for stopping by! I feel for your son, and I’m glad he’s doing better now. I’m in a really lucky situation, because I’m an academic and in my line of work, being Autistic is often an advantage, and is certainly not frowned upon the way it is in the rest of our culture. I’ve found that the few times I’ve told people, it’s actually worked out better for me, because once they know, they have a rudimentary understanding as to “why” I do what I do. People’s respect and tolerance levels seem to increase when they know. But I’m very careful about who I tell, and I haven’t told many people, only a very select few. Sometimes I wish I could wear it on my forehead. Having an invisible disability can be both a blessing and a curse.

      • I wish I could say I didn’t understand but, I can. I have Fibromyalgia, coronary artery disease and numerous other unseen issues. If you look at me, you’d swear the only thing I suffer from is eating too much. Too often we judge people by what we see and not what is real. You truly cannot judge a book by it’s cover art :)

  2. This is a fabulous post! I am so honoured to have the opportunity to regularly read about your experiences and perspective. Honestly – your insight gives me information that helps me with my son and also with my students.

    Thank you for sharing your experiences E. You are making a positive difference to the lives of others!

    Leah

    • Thanks, Leah. I’m really glad that I can have a positive impact on something.

  3. “I’ve gripped my hands together so tightly to avoid stimming in front of my parents that I’ve actually dislocated my own fingers.” – This literally made me cry.

    This post is so moving, I don’t even have words. What a survivor you are for accomplishing all you have despite terrible circumstances. If you write a memoir, I’ll be first in line to buy it.

    • Thanks for stopping by. I’m 22, I don’t have much to “memoir” about yet. Maybe one day. Thanks for your kind words :)

      • Bieber wrote one and he’s even younger! LOL.

      • Ahahahahaaaaaaaaaaaaaa no. *twitch* I feel like I should live more life before I sit back and reflect on it in book form. That’s what the blog is for. Plus if I write a book, it’s going to be science non-fiction.

      • I was totally joking about Bieber. And I completely respect your decision to live more life. For now, I’ll have to accept that you will be reducing me to tears through your blog instead of a book.

  4. I was abused for being autistic (and just for being me), too. But although I haven’t suffered nearly as bad as you, I will never forgive my parents for what they have done to me.

    “They tried to do their best” is not an excuse that gets accepted past the kindergarten level. I routinely fail students who tried hard but still couldn’t write the test well enough. The world doesn’t care about our trying. You can try, for example, to find a job all you want but until you actually get hired, you will be unemployed. This is why I don’t think that “well, I tried” is a good excuse for bad parenting.

    Autism in children gets exacerbated as a response to an intolerable home environment. Look at any autistic, you will find bad parents who are making the child escape into the world of her or his own. I think we should stop letting such parents get off easy because “well, they tried.”

    I’m sorry for the rant but this is a painful topic.

    • I do agree on principle, and I don’t forgive my parents for what they did. However I can and do believe they honestly thought they were acting for the best, with what they considered my “best interests” at heart. Yes, they did a pretty shitty job of it. But I think they had good intentions. They wanted to “fix” me, to give me the opportunities and skills and things they felt were important. I don’t think what they did was ok, but I do understand why they did what they did.

  5. I’m sorry you had to go through that. I’m sorry you had to be invisible. What great things you have accomplished. Thank you for sharing. You do matter.

  6. I am so glad you are free and living your life on your terms now. I hope as the years pass they will bring you more healing and closure. Time is so good for that. I have seen parents take this approach, one once “counseled” me to spank my autistic child when he wouldn’t go to sleep. I could not conceal my horror when she said it so glibly. She believed this solved her child’s sleep issues, and ergo it was the “right” way to handle it. I am encouraged by parents today who communicate and strengthen each other so that they never resort to such misguided methods. Adult autistics provide us with so much information that helps us understand and find a better way forward. Thank you for sharing your perspectives.

    • That’s so horrible! I’ll bet it “solved” the child’s sleep issues… when you live in constant fear of everything, a lot of things can be “solved”. No doubt the child simply learned that in order to make mommy not be mad and hit him/her, one must lie awake in bed, unmoving, with one’s eyes shut, regardless of anything else. Fake it till you make it. Or just fake it, because that’s the only option. Doesn’t really solve the problem – it’s like putting a cover over the mess on the floor. The mess is still there, it is just hiding under something else.

  7. Thank you for writing this article. I know most of your recent posts have been on the dark side, but please don’t stop writing them because of that.

    My son has Asperger’s Syndrome. Life is rough for him. I don’t know any other way to put it. And it’s not rough because he has AS. It’s rough because society doesn’t know what to do with someone who has AS. But all of us, including him, want him to grow up with the tools he needs to live HIS life the way HE wants in a predominantly neurotypical world.

    You may not be ready to write your memoirs, and I agree with your reasons why. But you might consider writing about your childhood experiences at more length, and about the choices you made along the way that brought you to where you are now. I found myself reading this article and ticking off in my mind the things I’ve been doing right and the things I’ve been doing wrong in raising my son. I didn’t come off too bad, but there’s room for improvement. (Every parent has room for improvement.) I plan to improve! In time I’m sure my son will thank you, too.

    Keep writing. Keep not being invisible.

    • Hi Tom, thanks for stopping by! Don’t worry, I won’t stop writing. I’m still battling the evil that is Mono, so writing takes a lot more out of me right now than it usually does, and I haven’t had as much time to work on it, because classes come first, always.

      And I will write more about my childhood. Definitely. One of the things I have trouble with in the blogging world, is that often people don’t read the whole blog. And in order for me to be able to tell my story, I’m going to need many posts, that build on and refer to each other – this is a reason to write a book, but that is not something I want to do yet. I will write more about my life growing up (I have easily 50-70 blog post ideas, and more come up all the time), but it takes time and energy that I don’t always have.

      And I commend you for working so hard with your son. I’ll bet you’re a great parent. Any parent who truly believes in the potential of their child and helps that child to reach it, with their child as their guide, is a good parent. :)

  8. I have been “working around” my autism since long before I was formally diagnosed. I was independent of my parents, in essence, by 18, for many of the same reasons. I am also a parent of long standing, far from perfect, but have tried to help my kids work around their limitations. Most are your age or older and escaped without labels, the youngest is 14 and because of physical anomalies, could not. It’s tough. Life is tough. At times I wish i had gone into science and academia instead of studying law. I look forward to reading more from you.

    • Yes, “working around” is a great way of putting it. I tend to prefer “working with”. I “escaped without a label”, as well, and in some senses that was good, because I wasn’t limited in the education system. However having a label, just knowing that there was a reason that I was the way I was, has helped me to grow enormously, and has honestly saved my life. Sometimes it’s great to keep labels away from kids who are doing pretty much OK (ESPECIALLY academically, because public schools can cause problems), but just knowing about my diagnosis has been one of the biggest blessings I could have asked for.

      • It has been a blessing for me as well, explains so much. And it turns out that in my near-extended family I am second generation”autistic-like” of…an uncle was diagnosed in the late 40s or s0me time in the 50s, my brother after myself, and one nephew and all my kids have had “autistic like” or somewhere on the spectrum labels…and I strongly suspect the other nephew and niece of very bright Aspieness, including with some of the allergy-GI stuff that often goes along with it. My mother (who is as mind blind as they come) would not hear of any of this however. My late dad (whose brother has the Autism diagnosis kept quitet until after Dad’s death) had an academic history very typical for an Aspie with some LD issues.

  9. Thank you so much for sharing your story!! I have to say that I have been working with the autism population for years and want you to know how beautifully unique you are!!! You matter and your differences make you your own unique self!
    Thank you so much for sharing your story I don’t doubt that you will become a famous scientist doing revolutionary work because I have found ppl with on the spectrum excel at their interests because they ate able to see things differently than NTs do
    Michelle

  10. Awesome post! Thanks for using HP. That puts a great spin on your story and makes it so understandable.

    • Thanks for stopping by. :) It’s an interesting analogy. I used to dream of living in a cupboard under the stairs, because I loved small spaces. And almost everyone has read “Harry Potter”. There’s actually a large number of Harry Potter analogies I could make…

  11. My parents did not know I had autism [they were told I was "almost autistic" in 1972, but that was before Asperger's label was available]. So they often punished me for my sensitivities and my reactions to my sensitivities and being bullied. I, too, was desperate to get away from my parents so I married too quickly. I also had stimming actions that I needed to suppress [for my own reasons --to prevent being bullied or shunned], however I never dislocated or caused serious injuries to my physical body. On the other hand, I am sure that I caused my clinical depression with rare schizophrenic features by punishing myself [to the point of tremendous guilt and hatred of myself ]–that is until I was dx’d at age 40. The dx was liberating and my parents apologized for how they treated me.

    • Thanks for stopping by! It is amazing the effect of just knowing the Autism diagnosis can have, isn’t it?

  12. To use another movie analogy – National Treasure. The scene is where Ben is handcuffed to an FBI desk and Agent Sandusky is outlining the consequences of Ben stealing the Declaration of Independence. Sandusky says (not a quote) Door number 1, you go to prison for long, long time. Door number 2, you help us get back the Declaration of Independence and you still go to prison for a long, long time, but you feel better.

    Learning life lessons at the hands of your parents may have been like a prison, but you would have had to learn those lessons anyway to get the outcome you are – if not by their hands, you might feel better about them, but prison would have been imposed by the rest of society.

    I’m in no position to judge your parents as abusive but since you have the only way to break free from that prison is to forgive them.

    • With all due respect, I disagree with your premise. There are plenty of other ways to teach a child how to function in society within the rules and bounds that society requires than to physically and mentally abuse them. One does not need to be hit and bullied to learn. Yes I did learn, I have said that several times. However along with learning some of society’s rules, I also learned that I was broken, worthless, good for nothing, completely incapable, and didn’t deserve any respect. I learned to live in fear of messing anything up. I learned that while others could make a mistake or two, there was no room for error for me. If I made a mistake, the consequences weren’t just a little bit of teasing from my peers, they were far, far worse. And nobody should ever live like that, “disability” or not.

      I consider myself lucky. My main coping mechanism was and is to convince myself that there *were* (are) happy things in life. I am an absolute optimist. I try my absolute hardest to find good in everything, regardless of how dire and miserable the situation is. If I were any other way, I probably would have ended up in the mental health system with severe self-injury, depression, or worse, as many other adults on the spectrum have.

      So sure, I managed to turn out “ok”, in the sense that I’m now living a life that I personally find fulfilling and happy – doesn’t everyone deserve that? But do the ends justify the means?

  13. [...] Despite the fact that they spent much of my childhood trying to beat the Autism out of me, and raised me in an incredibly abrasive and mentally/physically unsafe environment, my parents did do some good things for me, too. They taught me how to live independently. They taught me responsibility, and they taught me accountability. These are some of the most important things a kid can learn, regardless of ability. One of the hardest things for me to do is think in “shades of gray”. On one hand, my parents were abusive, abrasive and oftentimes neglecting. On the other hand, they taught me the most valuable life lessons that one can learn. Nobody is perfect, and I do believe that my parents thought they were doing the right things for me growing up on all accounts. That doesn’t make everything OK, but it doesn’t make everything all bad either. Shades of gray. Intermediates. Goods and bad in the same people. There is good in everything, if you look for it, and I always look for it. It’s my nature. Here are some of the great life-skills that my parents worked to instill in me that have helped me to function as an independent adult: [...]

  14. This post shook me to the core. I cannot imagine what you went through. I have four autistic children and though I am not a saint I could never imagine punishing them for who they are and their individual needs. I spend most of my waking hours learning about how they think, feel, interpret this world so I can be a good mommy and their safe haven. Thank you for writing on your experiences. You are helping others learn about how autism can and does affect people. God bless you.

    Momma T. From http://www.detourautism.blogspot.com

    • Thanks for stopping by. I’m sure you are doing wonderful things for your children. Just showing them that you do care about how they think and feel, and that you want to know why they are behaving the way they are, can serve wonders. Thank you for your comment. :)

  15. [...] is needed, badly, in this community. Where many of us are raised to believe we’re broken, and abused for our Autistic traits, it is vial that we spread the message to all people, Autistic or not, that we are not broken, [...]

  16. [...] – written by a 22 year-old autistic adult on my Evolution of a Perception post.  Her “Growing up Autistic: On Nature, Nurture and Abuse” piece is powerful, heartbreakingly honest and written with elegance.  Hers was one of the [...]

  17. Hello :)
    I was very moved by your writing. I am a 32 year old mother. My son is 4 and is on the Autism Spectrum. I dont feel like we are trying to hide this from him – but I am nervous about others judging him (if we are fully open about it). I actually talk about it with strangers all of the time because I am beyond proud of my little boy. He has pretty much been the most interesting, stubborn, brilliant, unique person I have ever met. I love him for him -not to say some days arent challenging – it is difficult when you are not wired like each other so you have no idea what triggers certain behaviors, tantrums, freak outs and other frustrations (he is verbal – but not with feelings or sentences yet). So, here is my question for you, in a perfect world, in your opinion, what is better? Being fully open about it with the world – or trying to hide it to keep him more “protected.” Lets face it – the world wants him to be something and act certain ways he never will – or will he fully understand why others want him to be something he is not. I never want to completely shelter him – but I dont want him to have to fight everyone or defend who he is constantly. I want him to feel safe, loved unconditionally and not feel like he is strange or weird because he is not! He is exactly who he was created to be. There is no reason why anyone else should have the right to try to take that away from him. So, there is my question. If you had a child like you or similar to you, how would you handle it? How do you raise someone with ASD to be proud of who they are when they are in a world that is going to point out all of their short-comings or differences instead of there beautiful hearts, minds and strengths?

    • Hi Shannon! Thank you so much for your wonderful comment. In answer to your question, how would I raise an ASD kid, or alternately, what would I have preferred the alternatives to be? I don’t know. I honestly don’t. It’s something I think about quite a lot, and I’m still trying to format it in my brain. I honestly think the best thing to do is help your son know you love him, and you love ALL of him. But that doesn’t excuse rudeness. You understand that there are sensory triggers (oh god sensory triggers, I have a terrible startle reflex that is the subject of a current draft post), and that sometimes he just needs to be removed from a situation, but as he gets older, teaching him to let you know when he knows he’s reaching his limit is important. You could even make it into a “secret hand-sign” or something (since verbal is one of the first things to go under stress) For me, knowing how my brain works helps a lot. People will *always* be quick to point out the different. That has never changed for me. But teaching him that they are not accepting and open people, and that if he sees something different from him, he should be respectful and open to that (golden rule, you know), it might help him to accept his differences from his peers. Almost in a sense of “everyone is a little different. This is how you’re different. This is how Todd is a different. This is how Jane is a different. See? You’re all awesome kids, and you like to play, but you’re all a little different. We can respect that.” – too much effort is placed on “normalcy”.

      “Strange” and “weird” are labels I wear proudly. I’m quite happy to be different – it’s where my strengths lie, and I’m happy to share that. It took a while to get to that place, though.

      So I guess my goal for Autistic kids is for them to grow up knowing what tools are in their metaphorical toolboxes, and to be able to access and use them to function in this crazy world that is not meant for them. Knowing and using your tools, and knowing that it is more than ok, it is RIGHT for you to do so, to do whatever it is that you do best, is super duper important. That’s the sense of self that is missing I think, in a lot of focus on raising Autistic kids to blend in. Blending in is over-rated. Respect and embracing of differences of all sorts, because let’s face it, it’s the differences in people that make a strong society (if everyone was good and interested in the same things, where would we be?) – teaching ALL children to celebrate and maximize their strengths is important.

      And all of this was just one big long ramble. I’m actually working on a piece of writing (for a friend, actually) that might answer this more directly, once my thoughts are more formed on it. Thanks for leaving such a great comment!

    • I am an autistic parent, with 5 kids somewhere on spectrum. i address it when needed, to work around issues. Our family is what it is. My older kids are in their 20s, and see how my autistic aspects have gotten in the way of thinkg like earning power, though my choice to spend time with them has also contributed. The older ones also have seen how their dad (pretty much the picture of Asperger though not labeled formally) has been able to at least succeed financially, and what it takes. My youngest hd more outside intervention and so it is harder to get him to work to his abilities. Sigh. Well meaning professionals don;t always do the right things.

    • Shannon– you sound like a wonderful parent!

      I think you ask an important question, and it’s a hard balance to strike. You’re right– the world isn’t ready to accept people like your son, and at some point, sadly, he’ll have to learn that and learn to stand up for himself against the system. But he shouldn’t have to start doing that at such a young age, I think.

      (I’m no expert, nor am I am parent, and my mother made the opposite mistake of E’s — she overprotected me to the point where I was nearly helpless on my own for a long time… but then, I don’t self-hate for any of my behavioral/sensory quirks. For many other things about myself, yes, but not for those tendencies. I’ve also never been diagnosed as on the spectrum, but I have enough of the same “symptoms” that I get along quite well with most auties.)

      I suspect you can probably tell some little white lies to the less understanding people to make it go down easier. Tell them your son is “allergic” to foods that he has sensory problems with. Tell them he’s “noise sensitive” or has “very sensitive skin” (or whatever his sensory triggers are) without mentioning autism. Say he’s “shy” or “awkward” or whatever if he’s having trouble with certain social interactions.

      I also have a suggestion for talking to your son about his diagnosis– maybe tell him that it’s (1) OK! and (2) something personal, like his physical “private parts”– something he doesn’t show or talk about to just anyone. I don’t know if that analogy will work for you and him, but I think it might.

  18. [...] – written by a 22 year-old autistic adult on my Evolution of a Perception post.  Her “Growing up Autistic: On Nature, Nurture and Abuse” piece is powerful, heartbreakingly honest and written with elegance.  Hers was one of the [...]

  19. Awesome kudo, that! And well-deserved.

  20. [...] me since kindergarten, and had their own biases, and to the fact that my mother was insane, and I came from an abusive household. I figured that once I got to college (and college was a given for me, no matter how often my [...]

  21. I have two boys. Both on the spectrum. The 4 year old was diagnosed a year ago and the 17 year old only 5 months ago. I was a single mom to my first born and despite ignorance I know something was not right with him at a very young age. He was misdiagnosed with ADD and accepted that to be the problem. The amount of times I yelled at him and critisesed him and asked him “what’s wrong with you?”, must have done eternal damage. I raised him on guilt and anger, things I am not only deeply ashamed of, but also regret terribly. Our lives changed when he was diagnosed. As I’m learning about ASD, I’m getting to know my son. I can see him for the first time in 17 years and we have some catching up to do. I agree with you. Forcing an Autist to engage and interact in a NT world must be abusive, but how else can an Autist function in a world not made for them?

    • Fortunately, many of us non-NTs find our own little corner of the world– such as in academia or the arts or the computer field– where we aren’t as expected to fit in with the mainstream. We find friends with similar tastes and have our own kind of social lives. It’s amazing how much of the NT world can be avoided, at least from high-school onward.

      Thank you for admitting to your errors and having the courage to face and change the misconceptions you had. All parenting is a work in progress, and it sounds like you and your son are both headed in the right direction.

      -A.

  22. OK, E., I’m months behind on your blog because I’ve been stuck on trying to respond to this one entry before moving ahead. So, I apologize for the somewhat scatterbrained response, but I’m just going to try and dump all my thoughts here and move on.

    This entry made me cry. I can’t imagine what you went through, and I doubt I would have even survived growing up with your parents. At the same time, I’m amazed– I know you as a bright and friendly young woman, cheerful and confident and witty and efficacious– it amazes me to realize how hard a time you’ve had, and how incredibly well you’ve recovered from it.

    (I also wonder how many of my friends realize how much I struggle with despair, mental illness, anxiety, and my other neuro-atypical quirks on a daily basis. I think I’ve even managed, inexplicably, to build myself a reputation as being “outgoing.” But I only started learning my coping skills when I was in my late teens, and many of them were pretty ineffective until I went on meds a decade later)

    Your mother is a completely alien species as far as I’m concerned. My mom did occasionally tell me to put down my books and play outside for a bit, but she never objected when I took the book outside with me. And she probably would have been quite happy if I never attended a party in my life. The word “normal” was not one that was mentioned frequently in our household, and when it was, it was not always as something desirable. That’s not to say that my mother responded appropriately to all my quirks, but her instinctive response to my tendency to have meltdowns was to keep me away from stimulating environments altogether (probably so she wouldn’t have to deal with me falling apart!). I do wish she’d taught me a little bit about how to fit socially into the mainstream– but how could she? I don’t think she has any idea herself…. and she doesn’t quite approve of the idea, either.

    Lastly, I want to tell you that I’m honored to be on the list of people you’re comfortable discussing your autism with IRL. I’m not sure what I did to earn that trust, but I’m glad that I did, because I very much enjoy knowing the you behind the “passing” mask.

  23. [...] have. They are inherently GOOD PEOPLE. This doesn’t mean I agree with all that many parents do (remember, my parents abused me, physically and mentally, for my Autistic traits, in their misguided …, an extreme of a situation that many young people live daily). It doesn’t mean that I don’t [...]

  24. [...] have. They are inherently GOOD PEOPLE. This doesn’t mean I agree with all that many parents do (remember, my parents abused me, physically and mentally, for my Autistic traits, in their misguided …, an extreme of a situation that many young people live daily). It doesn’t mean that I don’t [...]

  25. [...] like them. It shouldn’t be that way, but it is. I’ve been living independently from my parents (who abused me for letting my Autism show) for nearly 4 years. But 18 years of abuse is hard to shake. But today was a rare day where I just [...]

  26. Thanks for the great post! I’m a mom of an ALMOST 9 year old with autism. (The “almost” is very important to him!) He has always been mainstreamed, and is also in gifted & talented. There’s no hiding that he has autism, although his is admittedly not as overt as some others.

    He decided this year (in 3rd grade) that he wanted to tell his class that he has autism. I thought about it, worried about it, talked to other parents, posted on self-advocate boards, and finally decided, why shouldn’t he? He wants to do it, and the only “reason” why not to is because of what others might think. But they’re probably already noticing he is different already.

    So we went in one day, prepared with a kids book that talks about what autism is (in a very positive way — like “his hearing is really good! He can hear airplanes before the rest of us”). But also addressing where some of his difficulties may be.

    Then because he wanted to, we let the class ask questions. They were great questions. Very respectful. One boy asked what it felt like to have autism. My son looked at me like, HUH? So I said, “What does it feel like to have brown hair?”

    The best part though was when one boy raised his hand and said, “Sometimes I think I might have autism.” I asked him why, and he responded, “Because I sometimes feel different.”

    I asked the class, “If you have ever felt a little different, please raise your hand.” Immediately every hand went up. That boy was so amazed that others felt that way too. And it was a great lesson that there are ways that EVERYONE is different. And it’s okay.

    I love my son just the way he is.

    • Aww, your son is a very lucky young man. It’s great how these days young people are slowly becoming more tolerant of differences. I think the younger they are when differences are brought to light and explained as positive instead of negative, the better. Thanks so much for your comment! :)

  27. Thanks for this post (and the Harry Potter quote :) ). My 7 year old son is going through the process od diagnosis for autism / Aspergers and I would hope that my wife and I have made good decisions to create a nurturing environment for him, encourage his interest(s) and give him the opportunity to grow into as successful an individual as you appear to be / becoming :)

    • Thanks for the comment. :) Honestly, I think that if you’re aware of what you’re doing, and you want to “do it right”, you’re more than halfway there. Good luck :)

  28. Thank you so much for sharing your experiences, because your words reaffirm my commitment to meet and love my son who he is and where he is. Thank you for your writing, because you help me be a better parent for my child.

  29. [...] socializing with friends during an afternoon at a café or memories of growing up with abusive parents who didn’t understand her.  E.’s compassion for humans and their neurological [...]

  30. [...] Third Glance, Words and Growing up Autistic: On Nature, Nurture and Abuse where she ends with [...]

  31. Hi E
    I’d like to ask a question, if I may.
    My gorgeous daughter is 8 years old and was just diagnosed with Aspergers. We’ve been going through the process of getting a firm diagnosis for a few years, so it’s not a shock. But until now I have had no help figuring out how to deal with things, apart from the books of Tony Attwood, who is great in seeing the positives as well as the problems she faces.

    I feel that she will do better in the outside world as an adult if she has the ability to either control her behaviours, find other outlets for whatever energy or sensation she needs to release, and learn positive ways to help herself deal with situations that make her anxious.

    But I would hate to squash her as a person, because she’s glorious. Her quirks are unique and delightful, she astonishes me regularly with her insights and imagination, and she is a sweet-natured and loving little girl who is very popular and loveable.

    Here’s my question E: should I teach my girl to cover up her autism? And can I do that without making her think that being autistic is somehow bad or wrong?

    • Hi Wordbird,
      First of all, thanks for your comment. :) I’m sure it’s at least somewhat of a relief to have an actual diagnosis instead of just “she’s a little bit weird”. In response to your question: I obviously can’t comment directly for your daughter, since I know nothing of your lives, however I will answer for what I would have liked for myself, and I’ll explain why. If it makes sense for your daughter, then that’s great. Otherwise, please feel free to ask me more specific questions, either here or via email (in the “about” tab) – I’m happy to have conversations. Your daughter sounds like an absolute joy.

      What is most important for me is learning about my autism and how that makes me respond to certain events and things in my environment. Knowing that I need to take breaks, that fluorescent lights buzz, and that I need to be sitting in an office desk that has me facing the door with my back to the wall, so that I don’t jump every time someone walks down the hall. It was knowing that I could wear socks, jeans, and a fleece nearly everywhere, so that I could focus on more important things than how uncomfortable I was in my clothes. It was learning how to tap, flap, and stim in ways that were both comfortable for me, and that didn’t disturb the people around me. Typing everything instead of writing, because of my poor fine motor skills and atrocious handwriting. Leaving lists around my apartment about how to get myself up and out in the morning, and what parts of the routine I need to remember. But hiding it? Not anymore.

      It’s a lot of work to hide my autism. I can do it for short periods of time, and I’m not usually very successful. Which makes me feel like even more of a failure, because I’m failing to hide all the things that people assume make me a “bad” person (which is just bull in the first place.)

      Covering my autism isn’t important. Learning ways to work with it and around it, so that I can function on a day-to-day basis is.

      Anything that is not directly harming herself (eg. self-injurious behaviors, which I’ve struggled with much of my life) or other people (lashing out when she’s angry instead of say, counting to ten and then reassessing the situation), is not a problem, it’s simply her. Encourage interests. Common interests and clubs/groups surrounding them can lead to friendships and social interaction. Encourage her to meet people who are interested in similar things, even if they aren’t the same age. I’ve always gotten along better with people not my age (see my post Age, Autism, and Social Interactions), and they’ve taught me lots about how to interact with the world. Help your daughter to identify sensory triggers and remove them when possible (for me, food and clothes were two big ones that if I can control them, my quality of life and happiness are much much higher). And continue what you’ve been doing – celebrating HER, and helping her grow up into the best adult she can be. Autism isn’t something to be ashamed of. It’s something that’s a part of me, and it’s a part of her. And really, aside from the self-injury stuff (which doesn’t apply to everyone, and only mildly applies to me), it’s really not all that bad. In fact, I quite like being autistic!

      So I hope that helped some. Please, please, feel free to comment or email reply for clarification or other things. I’m happy to chat further. (So long as “chat” means online, where I don’t have to speak…)

    • I have found it is good to learn what situations I need to cover in, and what I do not. Also to find places, spaces, and employment/etc that maximize gifts and minimize the challenges if possible. As one wise man said, decades ago, “You are going to have to find something you do so well the world will have to deal with you on your own terms” Wish I had known that at 8. Lost a lot of time.

  32. You could be writing my story – except that I have not sought out a diagnosis for myself yet. Very few know of my upbringing, because I rarely speak of it.

    My mother wrote me off early on as being “different” and simply stopped trying. I too became independent at a very early age just to be free. I was the sole engineer in a family of dramatists, and I stood out like a sore thumb. I was hit when I would toe-walk, and I did exclusively as a young child, as though “beating it out me” would make me walk flat-footed. My special interest was dinosaurs throughout my childhood, and my mother wouldn’t allow it, telling me to do something more “girly” or “appropriate”. The same thing happened when I moved on to rocketry and engineering in high school. Even today, my mother tells people – including me – that the reason we don’t have a good relationship is because I wasn’t capable of it; I was “different”.

    I felt bad about that for a very, very long time. I felt like I was wrong. Now, I am a mother to a beautiful little autistic boy who does present more classically, but I cherish every ounce of him. I think my mother presented me with a good lesson on how not to be a parent. Now that I am a parent, I know that good parents love their children for who they are and not what they want them to be. I no longer own the blame for my mother’s inability to love me for me.

    I just wanted to thank you for your courage to put voice to your experiences, and thank you for giving me the courage to put a voice to mine as well.

    • Hi there. Thank you so much for your brave comment. :) I’m sorry that we had similar upbringing. But alas, you are not alone. I loved dinosaurs too when I was little. It sounds like you are a wonderful parent, and your son is lucky to have you. :)

  33. This precisely why I read your blog and others who have Autism. It helps me to try and understand what my child is experiencing and how to best support her. I also read everything I can get my hands on about Autism and particularly sensory issues. I have learned when I can push her and when to give her space and time to adjust or soothe herself. In return I have gained her trust, respect and most importantly love. I have seen her accomplish unbelievable things in the year since her diagnosis. She is almost 3 and already communicates to me when something “hurts” or is “too loud” and she would like to “go for a walk with mommy.” Tonight she told me I was her best friend, her princess mommy!” and I nearly cried. A year ago she would not even let me hug her or comfort her when she was scared or hurt. I realized I had no idea how to help her through it, because I didn’t know what she was going through. We didn’t have a diagnosis, and I thought her never ending tantrums and seemingly aloof behavior was just that, a behavior problem. Today she runs to me and hugs me so hard ( she enjoys deep pressure so I hug her hard back.) ofcourse if I have a sweater on she politely asks for me to remove it first (“sweaters hurt”) and I do. Ha ha We have learned together how to be a team. I worked hard to understand her challenges and researched how to truly support her in a way she felt comfortable with and the change in her has been amazing. Alexandra I believe now knows I am her advocate, that person who will always respect her challenges and love her for the amazing little girl she is. I tell her every day how proud of her I am and how special she is. I am her mom, and I will always push her to stretch and reach for things she may not always feel are possible. I do this because I want her to experience the self confidence and personal gratification that comes with facing and overcoming difficult things. The best gift I believe I can give my daughter is to be proud of who she is and confident in her own ability. She has many gifts and I never miss an opportunity to point them out to her. Your story gives me hope.

    • Sandy, thank you so much for your comment. You sound like an absolutely amazing parent, and your bond with your daughter seems wonderful. What’s so great is that you’re meeting her where she’s at, and helping her from there. That way she can grow and develop even better. You are amazing, thank you so much for sharing your story, and I hope you keep commenting. :)
      –E

  34. this is my childhood. i thought i was the only one

    • If you like them, *hugs*. If not, you are not alone. It’s amazing what the Internet can do to help.

  35. [...] beautiful detail the pitfalls and distractions of having a conversation with a group of people.  Growing Up Autistic where she writes,  ”Anything related to my Autism was punishable, regardless of the actual [...]

  36. *hugs you* (if you’re ok with that)


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