I've written a fair bit about how painful those kinds of statements are to me. I've talked about how dismissive it is of me, my experiences, my struggles, my failings and my accomplishments. Telling me I'm "not impaired enough" to even call myself autistic reduces me to a static snapshot of this moment in time -- worse, of someone else's perception of this moment in time. There is so much of me they cannot see in plain text on the internet. They have looked at one facet of me -- my facility with written communication -- and reduced my entire being to that single detail.
But today I want to talk about how harmful those statements are to someone else. Yes, they are insensitive and hurtful to me, but what is infinitely more important is that they are damaging to the child to whom I am being compared.
A child -- any child, not just an Autistic one -- is a work in progress. By this I don't mean that they are a someday-person. Every child is real and authentic and fully human in this moment, perfect just as they are. But they are also a sort of seed of the adult they will hopefully grow to become. And, to extend this analogy, think for a moment about how plants grow. If you could only see the seeds and bulbs and spores and had no idea what plants they would become, wouldn't you think an iris bulb held so much more growth potential than a sunflower seed? Yet, given time, the sunflower will tower high above the iris blossom. Tiny acorns grow into massive oaks, but before oak trees scrape the sky, that even smaller bit of dandelion fluff will take over the entire meadow, filling it with sunny yellow flowers.
The seed is not the plant. The child is not the adult. And children are such mysteries when compared to seeds. The experienced gardener knows how much harvest she will reap from a row of radish seeds, provided no accidents such as drought occur. A parent can give birth to a dozen children and still only have rough ideas of how that twelfth child will turn out, given no accidents that sway the course of the child's growth or cut it tragically short. Parents see things, many things, but not everything.
My sister (who happens to not be Autistic) was very gifted with mathematics in her teens. There came a point, in middle school, when my father could no longer help her solve problems, despite his degrees in chemical engineering. My sister was calculating problems involving things such as trains traveling through spiral tunnels. It seemed obvious to all of us in the family that she was destined to be a scientist or mathematician when she grew up. Her aptitude in the STEM fields was tremendous.
Imagine my parents' shock when my sister declared art history as her major in university. She went on to work for a non-profit protecting historical architecture before marrying and becoming a stay-at-home mom to two delightful little girls. She was an acorn that grew into a daffodil! I say that not to devalue what she has done. Hers is a well-lived and splendid life and daffodils have intrinsic value. But they are a shock when one expects an oak.
Children are unpredictable. Their life trajectories are hugely unpredictable. And, in many ways, Autistic children are even more so. Although I believe that autism is nothing new and Autistic people have always been among us (though unrecognized and called by other names) a clear understanding of what autism is and what the autistic lifespan looks like is still to come. These are uncharted paths that are in the process of being discovered by researchers, by parents, by Autistic people ourselves.
So . . . what is it that you are actually saying when you look at my life and say that I am not like your child?
In a very real sense, you are saying that you don't believe in your child. You are saying that your child cannot grow to be what I am, do what I have done. You are signing off on a package that has not been delivered yet. You are dismissing your child's potential for amazing growth and change. You are not just reducing me to a static snapshot. You are doing the same to your child.
Maybe you look at me driving long distances and then look at your 16-year-old who wants to drive but is not ready yet. You don't see that I was not ready to drive at age 16, either. I didn't get my license to drive until I was 25 years old. And even then, I was shaky and unsure whether I was making a wise decision or not.
Maybe you look at me writing detailed descriptions of my inner thoughts and understanding and then look at your 14-year-old who is writing surface descriptions of things and can't even explain why she does the things she does. You don't see that I was not able to begin to explain my actions or seek help for internal suffering until my twenties -- and not really in any meaningful way until my thirties. You see my blossoms and don't recognize that they are late blooms.
Maybe you look at me sitting in university lectures and passing exams and making the dean's list and then look at your 7-year-old who needs a one-on-one aide to be allowed to stay in a classroom at all. You don't see that I was hiding under the table and biting people in my first grade class and the teacher protested until I was removed from her classroom. I was still quicker with blows and bites than words at age 15. It has taken a long time and a lot of work to become a person who can deal with stress and conflict without exploding and lashing out. I dropped out of high school. I tried university at age 22 and had to drop out. I got my first university degree at age 40. I dropped out of graduate school. My trajectory has been anything but smooth.
So if you really do think that I'm not like your child, you should stop and remember that I am decades older than your child. And you should stop and ask yourself why it upsets you that I do think I am like your child.
I think I am like your child because I can see a kindred spirit in your child and because a doctor put the same word, autism, on my different way of interacting with the world as a doctor put on your child's ways. I think I am like your child because when I look at your beautiful child, I see a person but also a seed of the person to come after. I see potential in your child and I think it is magical and wonderful that your child is still being formed -- still forming herself. I see a million different paths your child's life could travel down and it is mysterious and I feel like holding my breath as I watch her grow.
If you think I am not like your child, I ask you: do you believe in your child? Do you leave the possibilities open? Do you nurture your child so that he feels safe to grow into the adult he is germinating inside himself?
If you believe in your child and you believe in your child's possible futures, I ask that you also believe me when I say that I am like your child. I am like your child and I think she is wonderful beyond the telling. Please, will you believe in her wonder and possibilities, too?
I didn't learn to drive until age 30. My little brother started lessons before I did, but he still doesn't feel comfortable enough on the road to go for his license.ReplyDelete
My little brother was the one with the language delay of the two of us. He didn't talk much as a kid. Now, we're both able to chat up a storm about video games. And we both sometimes have problems finding words; the autism doesn't vanish, we just try to adapt to a world which was geared towards NT folks.
(Even in my high functioning state, I had friends I met in college not believe I was on the spectrum (just quirky), until a friend who was in high school with me described me at age 14. I was better at handling social relationships at age 20, and autistic tendencies are not considered unusual when one is a nerd.)
Thank you. That's all I can say. Thank you so much for this.ReplyDelete
I don't believe in my children, because I try to only believe in things that exist. ;)ReplyDelete
Sparrow ♥ This is wonderful!ReplyDelete
I relate so very much to this post. I am not autistic and don't know anyone in my family to have that diagnosis. I have, however, struggled all my life with my own demons and relationship to the world. Some of my problems still haunt me while I have managed to find ways of coping with some. I am now able to function in an almost normal fashion. I loved your use of the metaphor comparing the growing child to the seed of a plant. Beautiful!ReplyDelete
Yet another lovely post. Accurate, well written, evocative.ReplyDelete
This is wonderful - beautifully written and very inspiring. I do very much believe in my son, and I think the experiences of autistic adults are one of the most important ways for me to understand him better.ReplyDelete
I love this post so much. We know that our son is not who he will be, but we really enjoy who he is now. It is really important to us (me and his Dad) to read what you and other adults have to say about your journies. Thank you. We are listening to you and to our son.ReplyDelete
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thankyou for the post. It gives me hope for my son who is a beautiful child with so much potential.ReplyDelete
Thank you for this. As a mom of a recently diagnosed autistic son, I was so scared upon first learning of his diagnosis. The media paints such a negative and limited picture. But reading stories of autistic adults has given me a new perspective. It has opened my eyes to the fact that my son need not be limited, and can instead flourish and thrive. It has helped me reassess my life through a much more positive lens.ReplyDelete
Let's be honest...it's not the same hence why it's called a spectrum. Its understandable you can't understand why parents of children affected by severe autism and their never hearing words, how their children feel, injurious behaviors and countless disappointments, sleepless nights etc. You are not these parents and haven't experienced this. Also we wonder who will care for our "forever children" once we have passed away. It's not that your not autistic enough it's that you're not accounting for the reality of others on the spectrum and struggles. Your struggles are also real...but totally and completely different on a grand scale.ReplyDelete
I'd like to take your comment point by point:Delete
"Let's be honest...it's not the same hence why it's called a spectrum."
Yes, it is, but that doesn't mean what most people think it does. The spectrum is not a linear severity scale. Imagine something more like a multi-dimensional color wheel. It describes a far more complicated situation, in which different autistic people all have many similar and dissimilar traits, which can all vary independently in intensity. So someone whose autism looks very mild could be having trouble that you can't imagine. And it turns out frequently that people who are thought not to understand or be capable of much at all, are far more capable than anyone thought once they have a method of communication, or a system of supports, that works for them.
"Its understandable you can't understand why parents of children affected by severe autism and their never hearing words, how their children feel, injurious behaviors and countless disappointments, sleepless nights etc."
As we are autistic people, I don't know why you'd assume we're not familiar with self-injurious behaviors, speech difficulties, or sleepless nights. We are, I promise.
"You are not these parents and haven't experienced this."
Several of our editors and writers are parents, of both disabled and non-disabled children.
"Also we wonder who will care for our "forever children" once we have passed away."
No one is a child forever. There are adults who have very different, and very intense support needs. That doesn't make them children. They may always need help, but they should also have the right to advocate for themselves and to have their ability to do so nurtured. Disabled adults should rightfully be considered adults, and laws in the US guarantee their rights to live in the least restrictive environment possible, with the help necessary to make that possible.
"It's not that your not autistic enough it's that you're not accounting for the reality of others on the spectrum and struggles."
People who have written and edited for this page fall all over the spectrum, from those who are fully independent, to those who rely on facilitated communication and help with every aspect of daily life.
"Your struggles are also real...but totally and completely different on a grand scale."
In the first place, there is no way for you to know this from the fact that we can type on the internet.
Secondly, sometimes when it appears that two autistic people couldn't be more different from each other in level of challenges, the *kinds* of challenges they face are actually very similar. Sometimes, people who seem to have similar levels of abilities actually have very different *kinds* of challenges. And sometimes people are very similar in some ways and very different in others. There really is no way for your assertion here to hold up, given the complex diversity of the autism spectrum.
In short, while it is true that people all over the spectrum can be very different from each other in abilities and challenges, ALL of us should have the right to be considered capable of learning and growth, even when what we accomplish might look very different from the life of a non-disabled person. All of us deserve not to have our capacity for growth limited by others' assumptions of what we will or won't accomplish, or presumptions that since we can't succeed in the same ways as non-disabled people, that we can't succeed at all.
Every single one of us deserves that, no matter how disabled we are.
As the neurotypical mother of a child who is generally considered 'low functioning', I'd like to thank you, chavisory, for your reply. I hope that my son will eventually be able to advocate for himself, but if not, the increasing visibility of autistic activists will hopefully mean he'll have help, and lots of it. I want him to make his own decisions and live his own life. He'll always be my baby, but so will my NT daughter, and I'll worry about both of them as long as I live because that's what parents do. And also, to Autmomla...I'm sorry you feel you've had countless disappointments. Sometimes kids disappoint you, because they're kids. And sometimes they're wonderful. It's not just the autism that does that, you know. And one other thing. You mention never hearing words. Stop listening for them. Your child communicates with you all the time non verbally. It's just as valid and you can still have a conversation. The ability to make sounds with your face doesn't define you, or any of us as a person, and if you keep hanging out for that, you'll be missing out on a lot.Delete
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i absolutely loved, and needed to read this. thank you!ReplyDelete
Yes I believe in my child and I knew he was special from conception through to being born at 29 weeks and was born still inside the embroitic sac and battling through intensive care 3 times and a coma, I knew I was blessed to have a special little man who would show me the world from a different viewReplyDelete
There are 2 comments I didn't approve here bc I will not tolerate people 'splainin to my authors that we aren't the kind of autistic they approve of or whatever.ReplyDelete
So if you're looking for your waaaah not like my child comment, it isn't here.
I actually believe you're probably a lot like my child. I'd like to help him in any way I can to find his own way. Do you have thoughts on school environment for young children? He's a 1st grader who is an advanced learner, that is very emotionally immature and has lots of difficulties being over stimulated at school. There is an option that places him either in a special education classroom for most of the day, or another option where is he is with other autistic children in a special program. Ordinarily I might frown on this, but after meeting the program instructors they seem much more interested and aware of his challenges and offering him the ability to learn things in ways that he prefers. Id love to hear your thoughts.ReplyDelete
Thank you everyone for creating this amazing space, and thank you Sparrow for writing this amazing post. I am a 54 year old Autistic women, diagnosed last December at 53. Even after my diagnosis through extensive testing and my health history and background I was told my another adult (not a doctor) that I had respected to that point that I was not autistic and that my doctor did not know what they were talking about and should not be diagnosing people. This person said I would not be able to have the conversation I was having with them if I were autistic. I did not fit that person's stereotype and experience of autism. Yet again I felt invalid as a person in that moment. I know that person does not know me or know enough to know all of the ways that we show up so I've done my best to let go of their comments. Your post says it all and I relate to much to it. It's me in so many areas. Thank you.ReplyDelete
Very inspiring. As the mother of a 14 year old who has seemed to go backwards in progress since hitting puberty, your description of your 15 year old self gives me the kick in the pants I needed to start feeling more positive. Thank you for sharing.ReplyDelete
This is a really great post, I do not have any experience with Autism as there is no one in my family who is autistic and I do not know anyone who is. However I have struggled a lot in the past with some of my own fears but I was lucky to have a wife that guided me through.ReplyDelete
Paul Quinn @ Med Care Pediatric
I loved this. My husband and I have had a conversation similar to your post, in that we think eventually our child will make her way indpendently, perhaps with or without supports, but it will take time. She may be ready to live totally apart from us at 30 or 35. She changes and matures in unexpected ways every couple of months. We have finally found the assistance that helps her identify and express her needs, emotions, and inner landscape. I don't know if she will drive (right now she has so much trouble judging speed and distance of other objects and where her own body is in space). But there are cities with great public transit. Really nice to have our own intuitions confirmed by someone who has been there. Again, thank you.ReplyDelete