I had a boy nobody knew about: a feeble autistic child. I was barely an adult myself when I put him away. I had no options. And I told no one what I did.
My boy avoided people. He would slip off to the basement, hiding in the narrow space behind the furnace, comforted by solitude and constriction. He barely ate. He rarely spoke. I knew my rail thin, silent child was not made for this world. To protect him — from himself and others — I found a place for him behind thick walls.
He was isolated, but safeguarded. It was the best solution I could come up with.
The years passed while I kept my dark secret. I would lie awake at night, picturing the young boy, his brow knit as he puzzled out the world. I saw him counting the threads in a woven carpet with a magnifying lens or spending hours cataloguing the floating shapes in his eyes, ignoring the people around him. He was remarkably unprepared for life among humans. As difficult as the world was for him, on those nights I wished he could have been lying beside me, sleeping and happy. I would doubt — briefly — my decision to put him away before once again realizing that it was the only option.
I could not risk the further complications of fathering children. I had already failed to properly care for the one autistic child. So I cut off that option, electing to have myself surgically sterilized.
I told no one about the boy as I advanced my career. The desks of my coworkers were chockablock with photos of children. They must have noticed that I had no such mementos, but I assume they chalked me up as an “all business” type with no personal paraphernalia at the office. Break room talk often led to questions about kids. When asked about mine, I simply said, “I have none.” When pressed, I revealed, “I can’t have any.” That always ended the conversation.
I dined with friends, laughed at their jokes and enjoyed their wine without them being aware of my secret. Of course, there were probably a handful of people who suspected that I was keeping something hidden — something big. They would chuckle, sometimes uncomfortably, when then wine flowed and I let down my guard — babbling in unconscious imitation of that lost autistic boy. My best friends were the ones that I didn’t feel a need to apologize to the next day.
I confided in one, younger, friend — a father of an autistic son himself — coming completely clean. In a crowded, noisy pub, over stout, I confessed, “It was different then. There wasn’t the support system at the time, not what your son had. I did what I had to do.” I held his eyes, both daring him to contradict me and inviting him to catalogue the mistakes I made. His sympathetic, “God, that must have been tough,” surprised me. I nodded, speechless. The food came, along with another round. The conversation veered, but my years of silence had been broken. His parting embrace told me I made the right decision.
It would have been impossible to live with somebody without revealing this secret. Early in our relationship, I took the woman I would eventually marry to visit my autistic child. It was better than waiting for her to stumble upon the evidence. We visited him frequently. She would smile at him. Occasionally, he would smile back, even approaching her. Eventually he accepted her. One of my happiest moments was when he felt comfortable enough to touch her, grinding his head into her abdomen, vocalizing wordlessly in autistic glee. I was grateful that she was willing to pass inside those walls, to hold that child with genuine affection.
The walls that enclosed that boy, that protected him, that my wife was willing to penetrate, were the barriers created in my own mind.
The autistic boy was seventeen. He saw how different he was from others – his inability to speak to strangers, his awkward interaction with humans. He was strange, but he didn’t have a name for it, nor — in the clueless world of the 1970s — did others. But the message from the world was clear. He was becoming an adult. He had to function on his own. What did it mean to live alone? How did people support themselves? He had no idea how to get a job. And yet, somehow people did it. There had to be a way, even though he could not see it.
Desperate and frightened, the boy latched onto an idea. He created me. I was a simulacrum, a sacrificial construct. My birth was his one competent act before he retreated into the cell he had me create for him, all those years ago. I was an experiment over thirty years in the making — his Hail Mary pass. He had no reason to believe I would succeed, and yet I did.
My first act was to bury that scared child deep inside me, keeping him safe while I struggled on. I had to figure out how to act human. I was the one who clawed through terror to speak with landlords and employers. I was the one who laid at night on a single mattress on the floor of a dirty apartment in Hackensack, endlessly rehearsing conversations I would have the next day. It took me hours to get out the door in the morning, repeatedly dressing and redressing until the clothes felt comfortable. Finally, I would walk a mile and a half to the back room of an electronics assembly firm where I worked alone, diligently, silently. I stayed until ten at night, stopping off on the walk home at a deli to pick up food I knew how to microwave. I ate once a day. I wasn’t brave enough to ask where the bathroom was at work, so I waited until I got home for that too. I would run home to eat, urinate and hide.
And yet, this was my role. The autistic child gave me two things before he retreated: the instinct to try and the ability to suffer. With sufficient capacity in both, my survival was possible, if far from secured. Then he put me in the human petri dish and left me to heartless, yet effective, evolution.
I learned through trial and error how to talk at work: which topics were acceptable, how long to keep it up, what were the best moments to make eye contact. I learned I could score points by showing up at a meeting and handing out an impressive technical document that I worked on in secret, at night, for months. My internal furnace burned bright as I poured energy into the gradually improving human. I suffered. I drained myself. But in a thousand small steps, I succeeded.
I learned I could live in a nicer home. I discovered where to go for simple furniture, how to follow recipes and eat real food. I bought a car so I could range farther. I learned how to make my conversation sound genuine enough to make a friend, and to go with him to noisy places like bars. Bars with women.
My first relationship was an awkward attempt. I was odd and difficult to communicate with. I did not know how to hide my hidden autistic child and still be close to a person. Eventually, with more failed attempts, partial successes, and eventually long-term relationships – including one that led to marriage – I discovered that the only way I could succeed was to show a glimpse of that boy. I could be different. I had no choice but to be different. There were women who liked different.
I improved at talking to humans and it paid off. I learned how to use my voice to influence people. I got better at figuring out what people were thinking: coworkers, store clerks, girlfriends. I was growing. I was molting. Each successive shell endured, fitter than the last, stronger, more realistic in appearance, better integrated into the human world. With very few skills of his own, somehow, an autistic boy managed, over the course of a few decades, to create a functional human being.
It didn’t bother me that he was real and I was not. I passed the Turing test. I felt real enough to me, and that was all that mattered. Happiness was out of reach. I was working too hard at being human to be happy. My only goal was success. And, against all odds, I achieved it.
Yet now – with a wife, a home, a career – I yearn for more. I hope it is safe enough to finally let the boy out. I want to be whole. I want to be with him, to be one with him. I want to face the sun together, to feel its warmth. I want to show him that we can survive, together, that we can only be happy together. He can be free and I can be real. And we will know joy. It is our last, greatest, challenge: to merge, to be ever different, yet finally, fully, human.
You made me cry. I finally got a glimpse inside of your head. I’ve waited more than 30 years for that. Thank you.
This is so beautiful
Very well written. I can really relate to this.
I’m glad that it has personal meaning. That’s perhaps my highest goal in writing it.
This piece is one of my most treasured pieces. Thanks you Jim. SO well written……….
You’re welcome, Hein. Your reaction is one of my most treasured treasures.
Me too 🙂
I am so glad you feel safe enough to let your self out and be whole again!! Blessings and best wishes Jim!
I want to add that my daughter and I are both on the autism spectrum along with a genetic disorder that may be part of the reason why. We both battle to be whole
Thank you karen. Good luck in your battle.
Ah, love, you are whole. It’s a different kind of whole than many people, but the world needs people like you and your daughter just as much as it needs the rest of us.
This is so hard to read, and beautiful.
Deciding to be whole again is such a good, and such a weird, experience….
It’s a goal. We’ll see how it goes. Thanks for reading, and for feeling.
So much this.
Tried explaining this a thousand times, a thousand ways. My first diagnosis was in 1980 when I was 3… then 27 years of hiding… then not hiding anymore.
Feels so freeing… so GOOD.
You wrote it so beautifully and brought tears to my eyes.
I’m glad you feel free and good, Heather. That’s wonderful. And thanks so much for speaking so positively about what I wrote.
Not any more. Don’t stop.
This affected me deeply. I had tears running down my face as I read it. Thank you for sharing your experience. My son and I are both autistic.
In that case, thank you for sharing your reaction. It means a lot to me that it connected with you.
It brought tears to my eyes , is there any treament for it when its genetic
What do you mean by treatment, Farah? I want to make sure I understand what you are asking.
Thank you for this. I have hidden my little autistic girl inside for 43 years. My own daughters have SPD and my 10 year old was diagnosed as ASD a couple of years ago. I was always different. Always struggling. Trying to be acceptable to others. Not understanding why everything was so hard for me yet seemingly so easy for others. I learned how to adapt and change myself to be acceptable to others. I didn’t want to be different – I just wanted to fit in. I have been searching for truth and balance all my life. I was missing something that I couldn’t put my finger on. It has bothered me for the last several years, since my oldest daughter’s diagnosis. Now I see. Now I understand. I have to let her out. I have to let her be part of me and for that to be okay. My mission is JOY. Thank you for shining a light in the darkness for others, like me, to follow. Blessings to you and thank you.
Kate, joy sounds like an admirable mission. I hope you find your way and continue to communicate about it. I doubt there’s any one optimal path to joy, being whole, or whatever you care to call it. This joining with my hidden child is the way it makes sense for me. It is in a sense real and also partly metaphor. I doubt it will ever get to a final state, because I don’t even know what that would be. Thanks for writing. Don’t stop.
Last week, the third person in a couple years asked if I was on the autism spectrum. Both of my daughters are, and I am always trying to encourage them to be true to themselves. I feel like a hypocrite, because I actively shame myself all of the time. Your piece speaks to so many things. “Fractured” parts within myself, if that makes sense. Thanks for posting this!
When it comes to fractured items, I will spend hours, days and weeks putting the pieces back together. If there is anything that characterizes me, it is my need to fix broken things. I get lost in it. I am me in it.
The kind of fractures you are talking about take years to assemble. It is a long haul. I hope you have the patience and the right glue.
thank you for sharing my son finally diagnosed asd at 25….people in the world need to hear others struggles.
Thank you so much for writing this. I cried while reading this, because it was like you were describing me. Lately my mask and act have been cracking and falling away and I can’t piece it back together; I’m too exhausted. And I don’t want to act anymore. But letting my autistic self show is very, very scary.
I am not officially diagnosed, but the more research I do the more I am sure that I am autistic. I’m trying to get an evaluation, but it is very difficult where I live.
Again thank you for writing this. It touched me deeply.
Veronica, I hope you get what you want and need. For me, the realization was more important than my diagnosis, but I suppose the one compelled me to the other. I wasn’t diagnosed for the sake of it, but rather as part of a process of understanding how to be what I needed to be. Good luck. Continue the research. The more you know, the less scary (or more urgent) it will get.
It seems to me you have managed to articulate quite beautifully what many, many autistic adults have gone through and still are having to. But when celebrity figures such as Jerry Seinfeld decide to break that barrier down and speak out, they are greeted with such hate and vitriol – from parents, no less – they retreat back into themselves, which is so sad. I wonder what else you have written? Thank you so much for this piece of wonderful expressive writing.
I don’t know enough about the celebrity angle to comment. I hope everyone is allowed the expression they need. For me, being public was something necessary. What I have written publicly can be found here on Living Amongst Humans. This will always be true, whether directly or by reference. Expect more.
Seinfeld actually retracted, and to be fair, I think he did not initially say what he intended to say, or was massively misunderstood by the public. By “on the very very far reaches of the spectrum,” or however he put it, he was pretty clearly describing being part of the Broad Autism Phenotype. I.e., with notable features of autism that don’t meet the threshold for clinical diagnosis…which is estimated to describe up to 5% of the American public.
On the other hand, there was Daryl Hannah, who pretty much straight-up outed herself as autistic, and the reaction from many parents of autistic kids was just shameful. Including that she might be, but she just shouldn’t talk about it because it makes autism look not enough like a horrible tragedy when talented, brilliant people with decent lives admit to being autistic.
I was just like “What do you people even WANT? Do you want to see reasons to believe that your own kids could find their place in the world and build lives to be proud of, or do you not want that? Because the way you’re reacting here suggests that in fact you don’t want that.”
Yeah, it was amazing in all the wrong ways.
Several of my autistic fb friends identify quite strongly with this post. My own “simulacrum” was a complete failure–too many other conditions complicating the autism, perhaps. A few years ago it crashed and burned, and I changed my name and stopped trying to pass for normal. (I named myself after the phantom in “The Phantom of the Opera”, which says a lot about how unacceptable I felt.) I hope your experience in “coming out” will be as positive as mine has been.
I’m not sure I see it as a coming out. It is more like a “bringing out” or a “coming in.” For me, the focus is on me, not on others. Think of the simulacrum as an incubator.
Ja, die wetenskap kan raai en poog om te diagnoseer,maar wie weet hoe die enkeling ly, hoe diep die seer sny en hoe wreed die mensdom in sy onbevoegdheid kan oordeel. Hierdie blik in die siel van die “vreemde” is kosbaarMiemie Nothnagel
Miemie , tog my masjien gegenereer Afrikaans . Ek is bly jy het hierdie alternatiewe oogpunt te sien. Dit is die menslike ervaring deel van die prentjie . ( Hoe het ek doen? )
Beautiful & hits so close to home because of my own neuroatypicality. Thank you for sharing this
You’re welcome, Cassidy. I’m glad you got a chance to read it. There’s more here and more to come.
Hey, I really liked your writing. I try to understand autistic people as much as my NT brain allows me. My interest is in learning about how people function, wondering why they do what they do. Those are my threads in the carpet. It is great to have an insight like yours. I hope you can be well and relaxed (if not happy) in your life, getting better at it little by little.
Thanks for your wishes, Stephanie. And thanks for making the effort to understand those who are not like you. It isn’t as common as it should be, but we all benefit from that attitude.
It’s not common Jim but we will do all we can to help others see and comfortably accept ‘difference’. I work with young people and try to make myself allow what we do together be their choice. So we might sit quiet even if mum expects me to be reading books or playing. Reading your struggle helps me understand, more, the hidden parts of themselves that the people I am with would need to feel safe with me to share. I am learning so much! Thank you.
I was diagnosed when I was 17, in grade 12. It was such a joy to have a name for what makes me different, to know that what I experience isn’t my imagination, and that I’m not alone. I spent quite a few years breaking down similar walls and letting out my own inner person, rediscovering who I am, what I need and whatnot. Not everyone understood it. I had a relative, whom I see maybe once or twice a decade and whom I was on vacation with, tell me I didn’t need to “try so hard to be unique”. I had a therapist claim that I was “blaming everything on autism”, when I was trying to explain how autism is pervasive and I was still figuring it out and well, he didn’t know anything about it and had asked to be educated. It was rough, and not everyone has understood it, but I have met so many good people who have, a large community who understands and is supportive, and I am a much happier person.
I wonder what it would have been like to be diagnosed at 17. It was the hardest part of my life, the phase I was least prepared for: transitioning into adulthood. I stumbled 40 more years, unknowing, before I started following a path that would lead to diagnosis. I’m glad you did. I’m glad I did. It doesn’t solve everything, but it does allow those connections you talk about. I’m encouraged by you being happier.
Amazing!Thank you so much for posting this! It could have been written by my husband (he is in the Spectrum) and it helps me understand my son , he is 3 and currently being diagnosed for Autism.Hope you keep posting ! It helps us parents to understand better how you see the world! It’s so frustrating wanting to help my son (he is non verbal) and not being able to… It breaks my heart to have him look deep into my eyes, know that he wants to say something but he can’t…So I really love reading posts like these! They are not written by Doctors, they are written by people that live it every day and really know what it’s like…it also gives me hope and reassurance that my son will be ok and can succeed when he grows up.So please do keep posting!
Sandra, I don’t plan to stop writing. Feedback such as yours is foremost in my motivation to continue. Nothing that means more to me than to give parents such as you, or people such as your son, hope.
This is very well written and a great insight into how some autistic people feel every day
You seem more like a split personality than an autistic. I have a 52-year old autistic child.
Interesting. Nobody has ever said that before, nor do I see myself that way. I wonder what caused you to say that.
I have a Psych minor, one class away from a double major. MPS patients almost never have only 1 “self” inside them, and tend not to be aware of what happens when another personality is in charge. When one does, it is usually one of the “guardian” personalities.
When I learned I could chat through the computer, it was in a game that let everyone who was on that team chat in the feed. At first team Scorpio, while the smallest, was a blur of quick comments. Then I found I could ask questions. Then answer them. and people started saying hello to me, and asking how I was. As the game became one of my obsessions (I had bronchitis that winter for several months and I could click in a hidden objects game, read relatively simple things, or watch TV, so the novelty of the game was keeping me sane) I started a second account in the same game. Several people did this. Keeping track of their different names was hard, and my notes on who people were was confusing, so I took the start of my game name and added a 2. When I heard my team was having something happen and those accounts were stuck in a team I was visiting for another hour, 3 was born. 4 came later. There were things in the account’s “home” that you could arrange, so I started having fun with those items in the second garden. The third, I planned a different way of doing things again. And with the 4th. When I was in each account, the legitimate part of my personality, ones my family knew I had, came out. Someone frustrated with the management started a humorous thing in the forum to let off steam, a pretend, non-violent protest. Told the admins to get out of the way, we weren’t upset with them. I was the first to bring my different avatars into the fray as different people. Not the last, and many admitted then that when they were in different accounts, the way they had decided to play changed how they even interacted with their teammates. I carried on the same conversation as I moved between accounts- had more than one browser open, so when visiting other teams I would let them know that the different aavatars they saw were all me.
And when I was with the people who knew me, under certain situations my second and 4th “selves,” my whimsy vs my logic, would squabble as I decided what to do. so did a couple who was sitting with their laptops at the same table. Just part of their lives they were sharing, and always where we knew they loved each other dearly so we could laugh. So my response here isn’t the only time I’ve discussed traits as if I was more than 1 person.
In MPD, the characters who develop are protecting the original. One of the other multiple-accounts people was commonly called Sybil. I remember the discussion of what wasn’t right about the movie in class more than I do the movie (“Sybil”). But the main character, like many with MPS, had a trauma too terrible to deal with. So parts of her brain developed different selves that could handle things that the abused little girl was left unable to manage. I am here, looking to see what I wrote in my response. I do remember that I ended my description with “I”, that I had used the third person until I was a year younger than I am. If I had MPS, and not an active imagination, the goal would be consolidating the aspects of the personality into one person. The game, in the format I had been using, died. Someone purchased the Facebook version. I am only 1 “person” there, but just the other day I was in a group chat with a few people from the old version, who transferred to the new one, and referring to a project that takes a lot of time said that for me to have started it more than one of my old avatars would have had to wanted the result.
In MPS personalities can fight each other to stay active, try to lock one up. Especially one not able to handle a situation. If the main personality cannot defend themselves in a situation others will push it aside and deal with it. I understood you to be using an analogy. But I can see how someone could mistake “I made the decision that I don’t allow myself to do this, even when I’m lying in my own bed and saying ‘I will not count that. I will not do this other thing. I will force my hands (or whatever body part is trying to stim) to be still.” The same brain is dealing with whatever one’s ASD symptoms find overwhelming, the part of the brain that knows that if you add an action you know helps you cope, and the part that says “I need to “pass” because I need to get something done, and the part that is upset both because you aren’t handling something well and because it isn’t fair that you can’t do what you know calms you because you remember feeling relieved in the immediate bit when you did it, but also how NTs reacted. Having one of those or the other able to actually take control, other than a meltdown or shutdown, would be wonderful.
Fantastic to read this, I have three autistic children(and 4 non asd) and a hubby who is most likely asd, this has made me smile,Thank you.
Does he like sunlight? Sunlight is too intense for my senses. I wear sunglasses– giving myself permission to wear them no matter what the weather has been a good way for me to take care of my vulnerable self.
::mental hugs:: The world can be very hard. Keeping him safe while your simulacrum deals with the storms was probably a good path, but you know that you are gradually creating a safe space around you, right? Your wife, the father of the autistic child… and there are *so* many of us on spectrum on the Internet.
Helen, sunlight is not really an issue. It is easier to close my eyes than to close my ears or my nose: less disruptive than screaming when someone hugs me.
I too, am a created being of my inner self. Life was too hard, too loud, too scary. So I came, as well as a few others, for different situations. My goal is to be as normal as possible. I watched and learned. I talked and went to school, to University, to work. I did not spin until I was dizzy and then lay upon the ground watching the spinning colors and sparkles. I did not rock. If I started I froze but sometimes I could feel my inner self rock. Try explaining that one. I’m rocking on the inside I told one counselor. Yes I learned not to say that again. With another I think I have DID, his response does your husband come home and find you playing on the floor as a kid. No I replied. Then you don’t have it. But that is why I’m here so I don’t do anything odd. Don’t attract attention. So of course I don’t play on the floor like a kid ( what does that mean anyway? Because when I was a kid I didn’t do it right then either). Autism never entered my head not even when my 3 kids were diagnosed not until I heard Tony Attwood lecture about girls on the spectrum. I sat in shock that’s me. For the first time in 40 years, I fit somewhere. I didn’t fit at home, at school, at work, at church. I tried so hard. But I kept getting it wrong. I felt like I’d failed my inner self. Now when I feel rocking inside my body , I go somewhere and rock. It feels great! I don’t make myself stay and talk when all I want to do is get away. I’m free in ways I’ve never been. I dream of a day when all of my selves are integrated together, of a world were different does not mean bad.
I could have just as easily called this, “Rocking on the Inside.” It sounds like you are on the right path, at least. I wish you luck in pursuing that dream of integration, of helping to create that world you imagine.
Wow! This is one of the most brave, and incredible pieces I have ever read! I wish you only happiness, as you deserve it! Please allow yourself that. Please give yourself that gift that only you can give. You are one amazing man!
I let him out and the world murdered me.. its still not ready for us.
I have been deeply hurt by NTs. I didn’t realize how much. I went to the “brainy” things in the church group (I happen to be on a Christian path. And vegetarian. I do not understand why people who are either think it’s their business to get others on that path. I talk to a Wiccan friend, one in a traditional-Indan/Asian-meets-New-Age one, about their paths when it comes up in the safe place I found online. I sit in a bar with people of my faith in a church that doesn’t tell you what to believe and don’t care what is on their plates as we talk about science, which we believe in, and social issues, which we don’t always agree on, etc). It was in that bar basement I realized during semi-structured talks- there was a list of things to think about, but the groups’ conversations went in different orders and on tangents, that people were willing to drive me home- I have the face-blindness so many of us do that includes being unable to remember what landmark comes next on the road and to predict which way the driver will turn when they get to the intersection, as well as physical issues, that keep me from driving) They kept wanting to drive me when they realized my conversational skills plummeted when talking to an individual without a plan. They did this for years. When I arrived at the fall kick-off tailgating event there wasn’t the “oh, it’s the weird girl” reaction I was expecting. Soon a member told me to text her when I was going to one of our events, and unless she was ill she would get me. When I had to post to the FB page for a ride people come up to me, say how happy they are I made it. And always, has someone volunteered to take me home yet. When I had a shutdown, in a youth center gym, Molly had to know. Getting a crying female to the restroom is normal. Not hugging her and trying to talk it out, for a female-to-female, is not. I saw the male minister wanting to come over, to do the things his training, his experience with his wife and dear female friends said to do. Molly wasn’t in my sight, I was only hearing the chaos of a loud basketball court filled with youths and young adults (mostly 20s). What signal said “I need to handle this” was given I don’t know. The part of me that was rejected by 8 Girl Scouts of a troop I’d been in for 2 years didn’t think the acceptance from Molly would last. When Chad immediately angled over from the game when I emerged, I expected things to change. I am wondering if Molly knew I was on the spectrum before I did. But Chad didn’t know. He heard I was Autistic, and nothing changed. He was driving me that night- my usual person was working. He dropped me off, said he knew this event had been hard on me but hoped that, when one of the older, calmer teens had asked if anyone could help her with a task, away from the chaos, and 2 of us were working together, that that was fun for me. And then talked about the next scheduled thing, a study session, the same way he always had. When I told the other pastor who leads us, as she dropped me off the day my usual ride was ill, that being in a noisy bowling alley and pool hall, even the VIP room, and with people from the Islamic center- I’d gone to the meal there one Friday and the prayer service and so on, but that is different than being in a noisy place trying to talk to whomever wasn’t bowling or taking their turn at the pool table, and adding language differences and their cultural norms, as many are immigrants, to my usual trouble at social events was too much. And she accepted that and talked about the activity after that. There are people who will let you let him or her out. Who will be saying something interesting, so you want to focus on their words, and to whom you can say “I know that doing (whatever I’m doing) may make it look like I’m not interested, but in fact when I was trying to make eye contact I was losing track of what you were saying, because I am Autistic” and they will take a second, process that, and then continue. The other day I posted to the group that I’m face-blind and have trouble with names, and would be using a pocket notebook to help me because I was in a group where I wanted to know people and am developing the skills to do it. I was scared to log back on. 2 people who knew I knew them posted support, a promise to keep picking me up. Others posted a feature I might remember (like red hair) and some interaction from last year. I wish everyone met a Molly, a Chad, a Rachel and an Anne first. The people who are ready.
What a remarkable piece of writing. Well done. May you both find joy, and live each and every moment in it.
So beautiful. Made me cry. I hid my autistic self for so long but now they are free and life is so much better. I can be a better parent to my son’s who both have autism too. Thank you for sharing your experience.
Amazing and so beautiful. As a mother of a little autistic son,I am forever trying to understand the world from his viewpoint . Thank you, you are so brave a
This infographic I put together might help you understand your son a bit more: The Autistic Child
I have never received an ASD diagnosis myself, though i would not be surprised to receive one if i sought it; this… this story is far too similar to my life to feel in any way alienated from it. Your article has raised many questions within my self; regardless of the answers I find, i commend you for your beautiful writing and tremendous ability to touch the hearts of others. I am frightened, somewhat, by how eerily this article applies to me… and that fear is a deep, desperate one; my mind has begun to reel with the possibilities of why i might relate so easily, so precisely. YOu have written your story, and i have found both comfort and unease within it; i believe that to hold great value, making your story ever more valuable. Thank you for sharing your existence with the world.
Keith, for me it was a relief, a gift, and a challenge to find out who I really am. Overall, it has been overwhelmingly positive. I hope that becomes true for you also.
This was the most beautiful article I have ever read. Thank you!
Reading this solidifies why we stopped ABA with our son. I don’t want him to suffer through being told who he is isn’t normal enough. We are now looking for ways through OT to assist him with sensory processing and motor skills that let him fly his autistic flag proudly.
Anonymous, whoever you are: I’m glad you have made this decision. His autistic flag, you say. That might just inspire my next infographic. For now, this is what I have.
I wept in recognition. Thank you.
I have spent the last 5 years going to the types of things at my church and my alma mater that my child wasn’t told she wasn’t allowed to. The first time I went into a bar it was for a group that discussed issues. My child was allowed to be in the “Talented and Gifted” room at lunch and if debates on theoretical or academic issues popped up she was allowed to join in. The other students were eager for that child to work on group projects. So I was able to help start the church garden for the local shelter and soup kitchen. But the girl had listened to people talking about getting together to study, to go together to the social events, and no one looked at her. And she had gone to a Girl Scout multi-troop event with 8 girls who she had worked with on badges and Scout business and found out that the tents… held 4 each. And she asked for different ways of dividing the troop, to not be 4 and 4 with a remainder of 1. And 3 strangers were nicer to her than her people were but no one in that troop, when they passed her in the halls at school, acknowledged that they once were “sisters” to the girl and now she didn’t come. Before that, when she was 12, the girl thought she had a second friend until she found a note in her locker, after most of a school year, and talked about the spells when she was too tired to keep up and tried to be so small and put her head down so no one saw the tears, and hoped the teacher wouldn’t crouch by her and talk softly because it was too much, and physically getting to the girl’s room when they stopped talking was hard and there she would have to pray that no other girls came in wanting to talk and hug and all the things that the girl could not take when she was like that. The girl had seen, in black and white, a list of why she was different, and found that the person she trusted most to help her, her best friend of 4 years, had at least seen that list of all the things that she fought that weren’t acceptable in a friend. When she wanted to read it again to try to make sense of it her parents had taken it away. The school made the sender apologize but the girl had seen it, and when she moved the next year and was without the friend who had helped her she remembered that note. If she couldn’t help the crying, couldn’t help the other things, was without the person who had understood both her and the world in the class… The girl once had 3 middle school yearbooks. She realized that every signature after the move was generic, and only a few of the 6th grade were for her. And that one hurt too much to remember anyway.
The girl started to get sick in high school. Her legs wouldn’t cooperate, couldn’t manage the moment with both feet off the ground that’s required for a “run,” She got sick easily, ached when she was active and got sick after tests or writing papers or the yearly mile run. People stopped noticing she didn’t participate with things outside her college classes because she started getting diagnoses… a non-fatal motor neuron disease her mom and grandpa developed after she was born, fibromyalgia, several wrong diagnoses before they figured out she had Celiac Disease. So the girl in 6th grade and then those Girl Scouts and the high school students who ignored her outside of the “allowed activities” got the final word because going to college half-time, doing her homework and studying, took all her energy. The semester before she finished college the girl sat in her family’s kitchen and called distant relatives while she made the stew she and her dad could eat when her mom, who’d had a bad stroke, didn’t need them at the hospital, and had no one in town to call for her. When she graduated, because she was ill, she went home… and read, and crafted, and helped care for her mother, and after a few years found herself in a new church that had discussions like in college, that she was allowed to go to. She and her dad went to a book group and talked about Sherlock Holmes once a month.
There was a woman who emerged when her mom needed care. When her mother started fainting and she argued with her father about calling doctors (and who didn’t say she was right when the doctor who thought it was an affect from the stroke said they could wait until she saw her neurologist the next week unless she fainted again that weekend, but instead did the phone and food thing again while her mother had pacemaker surgery). Who, when her mother developed dementia, took care of her during the day when her father worked, could speak to the visiting nurse, who emptied catheter bags and took care of medications and told her mother what the rules were, who helped her father make decisions about her mother and the house.
The woman cared for the family puppy after it needed surgery and handled the training of a sensitive dog who had spent the time she should have been learning about the world in a small pen and being taken to vets to have her cast changed. The dog needed her to be the woman because she couldn’t learn what was normal as a puppy and so needed to watch the person she trusted most to decide how to react, after needing extra time in the beginning training classes. And because the puppy bonded with the woman who cared for her, and the woman started teaching her tricks to keep the pup’s brain busy when she had that cast on so she wouldn’t try to run, the puppy learned enough to be the woman’s assistance dog, and the woman found that when the dog was with her she could stay the woman after the discussion was over and while she tried to deal with the people in the times before and after the stuff the girl was allowed to do.
The woman has been seen outside the house, outside the discussion groups this year. Sometimes with a Sheltie beside her, sometimes not. The woman ignored the girl and asked on Facebook if someone could pick her up for events, and people were eager to. They come up to her and say they are glad she made it and ask if she has a ride home.
I have sat on the floor of a youth center and known that what was happening was called a “shutdown” and someone guided me to the bathroom and I felt their hand on my shoulder, because I was enduring something they understood. I saw the eyes of the man watching outside and I said the word “Autism” for the 3rd time outside a therapist’s office. I have done things the girl was never invited to do and so thought I couldn’t- a pizza and board game night in the church basement, a picnic, a good-bye party for the first people to express that they would miss me since I was 12. The 2 people coming in to take their posts arrived last week and I was able to say hello. And I didn’t feel like the girl, I didn’t feel like the woman who I put on because things need doing. Parts of them are me. I am 36, and like you, and like so many who didn’t know there was a “spectrum,” a year ago I began to try to leave the house as me.
Jennifer, I’m so glad you found this piece and it prompted you to tell your story. I hope you continue leaving the house as the real you. You have so much to offer. Your story—shared here so wonderfully—says so much that I and many others can relate to, and that the rest of the world would be in awe of. You are brave. Brave to share and brave in deed. I hope you have shared your story in other ways, in other places. I wish you the best.
Thank you for sharing your well written, deeply moving, personal piece of insight into the world of a person with autism. I posted it on my FB, only 2 friends liked it, one a very empathic, good friend and the other my caring husband… Somehow, it saddens me a bit to see that even when a valuable insight into the mind of “different” people, like yours, and maybe a lot of people around here, doesn’t seem to get through to “the public”. What do we have to do, to get more neurotypical minds, to be attracted to an article like yours, to read it, and to become a wiser, more informed and thus caring person from there on? I only ever got to this website, because my son of 2 years old is diagnosed with autism, and because, by doing all the research for him, I finally found out I probably have autism myself. All the pieces came together… If not for him, I would have never have known, and I would have never read your beautiful “story”. All my best, Ines
I appreciate you posting it to Facebook, Ines. It has been almost three months since I started writing here. Since that time, over 18,000 people have visited Living Amongst Humans, 90% of them for the first time. To me, that is encouraging. It has only happened through word of fingers. There are many more voices speaking on autism, to be sure.
And yet, these messages reach only a tiny slice of the population they could. That is understandable. It is hard to draw people in to read, especially in the format that I use, when there is so much other information that they are confronted with. A Facebook timeline or twitter feed scrolls by and a word here, a picture there may catch their eye.
The autistic message is very important to me, and many others, because it is so central to who I am. I give voice to my personal corner of that landscape. It competes for attention in the global meme pool. My brother might say that it does so simply on the basis of how attractive it is. I can influence that in limited ways: the way I write, the subjects I choose. Keep spreading the word. We’ll see how far this goes.
Wow, I am speechless.
I thought this was about a mother putting away her autistic child for like half of this piece, then I figured out it was not. This piece was very sad. Very sad actually. I think most poignant was the idea of sterilizing yourself because you didn’t want anything like yourself in the world. This is was a very profound piece.
We all start off reading trying to fit the author’s words into our frame of reference. For instance I suspect, from your words, that you are a mother. I would offer the following though. It wasn’t as much not wanting to bring another such as me into the world as not being able to cope with anything but my own survival. I’m actually quite in favor of autistic people, properly cared for, properly supported and properly aware.
Thank you. Pave the way for others. By your own mind, on your own. I am on the other side of the planet yet I have lived what you describe. I know the truth you speak. Thank you for daring and thank you for sharing.
Thank you, Rikard. You’ve come a long way to speak your own truth.
It seems that you are not the only one who split your autistic self from a mask you created. I sort of did that too, only I did so by creating an image of a superhuman being (an elf) who was just waiting to save the world (because I made a pretty poor excuse for a human, in my eyes at the time. Yeah, that sounds more delusional than what you are talking about, but really it comes from a similar place of hating yourself and wanting to be somebody who is acceptable.
Having an autistic grand child this touched my heart tremendously.ihave always loved him unconditionally and so intent on unnderstanding him.He is amazing and so are you.I always feel bkessed because of him in my life
amazing…I’m speechless. Thank you.
Thank you, Patti. You were just speechful enough to brighten my day with your reaction.
Wow… I was not sure at first exactly what I was reading but it became crystal clear the further I read. My son has Asperger Syndrome & ADHD. It is so hard to explain to others why he is different…why it takes him longer…why he just doesn’t understand what you are saying. I need everyone to read this & then maybe…just maybe, they would understand him a bit better. Maybe I need him to read this. Thank you for sharing.
Diana, I’m glad you think that this piece has relevance. If your son — or anyone else you know — reads this, I would love to know their reaction.
My little one cries and cries. I have to shut her in the cupboard. I keep asking for help, but no-one listens. No-one will help. The part of me they can see is grown-up. She doesn’t look like she needs help. She looks like a whole grown-up person and they expect her to behave like one. They say, “You must be responsible; you must help yourself.” They don’t realise that’s exactly what I’m trying to do.
Linda-Teresa, you provided the same comment on another related piece A Conversation with a Friend, so I have replied there instead.
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