Happy family playing on the grass in the park in the evening.

I’m sitting with Holden in our home office which we’ve painstakingly decorated with every piece of nostalgia we could find over the years. “This,” Holden says as he waves his hand vaguely at the walls, “this is what the inside of my head looks like.” I sit back and realize that although we’ve been married for over eight years, I’ve never understood my husband as much as I do in this moment.

Just last month Holden was diagnosed with autism, and while this diagnosis has answered some questions he’s had all his life, it has also opened a whole world to him that he wasn’t anticipating being a part of. While looking around at our all-too familiar office, I wait for Holden to be ready to talk. I get the feeling he has a lot of catching up to do.

Lyvonne: At what point did you realize you might have autism?

Holden: Probably about a month or two after we figured out that our son Cade might have it. I was doing a lot of research and things started to add up, for not only him but for myself as well.

Lyvonne: At the risk of sounding cliché, how did that make you feel? Realizing that you might have autism at 29 years old must have been a bit of a jolt to the system.

Holden: Um, really my age didn’t come into play because we didn’t know much about autism, so I was kind of confused. Usually when people think about autism they think of the stereotypes, people like Rainman or those kids that sit in the back of the class who don’t really participate or seem to be in their own little world. While I am neither of those, I was having a hard enough time understanding how Cade fit into that world, let alone how it was possible for me to be a part of that world as well.

Lyvonne: With the introduction of not using functioning labels like high or low when speaking about those on the autism spectrum, were you told where on the spectrum you actually sit?

Holden: The psychologist was actually quite surprised that I fell on the spectrum not as someone who would have earlier been given the separate diagnosis of Asperger’s, but rather as someone with moderate autism like that of our son.

Lyvonne: You talked about the research we did for Cade. What part of it really clicked for you and made you think “Wow, that sounds like me”?

Holden: To be honest I don’t know; I don’t remember back that far. I just remember as I was looking through all the Google checklists of “your child might have autism if” and thinking “wow, this reminds me of my childhood” or even “this reminds me of now.” Of course, at the time of the research, my attention was on Cade and so the thoughts about myself were just in the farthest reaches in the back of my mind.

Lyvonne: Was there something that really stood out from your childhood that just made things click? Once you got to the point of looking into your own diagnosis, I mean.

Holden: As I started going through the diagnosis with the psychologist, she started asking me a lot of questions that brought about memories from when I was a child. Things like going through all of these different social groups as I moved schools or districts, things most kids didn’t seem to go through.

Lyvonne: Were you able to look at Cade and his struggles and see your own within them? Either from your childhood or from your adulthood?

Holden: I don’t know if I necessarily saw myself in him. I really do believe in the saying that if you’ve met one person with autism then you’ve met one person with autism. Cade and I experience the world differently from each other, but I think I see some of the same loneliness in him and it really makes me sad. I hope for a better future for him.

Lyvonne: Seeing as you are experiencing the understanding of autism as an adult rather than in early intervention as a child, do you think that is affecting how you are approaching your own diagnosis?

Holden: Honestly, for me, I think as an adult I’m able to look at the fact that I spent 30 years not having the diagnosis and trying to make me work in the box of society. There is almost a script the rest of the world is going by and I feel like I had 30 years of ad libbing in the world. So now I’m seeing it’s OK to be me and there’s a reason why I didn’t get the same script as everybody else.

Lyvonne: Does that mean that, if given the chance to go back and change things, you wouldn’t choose therapies and interventions and would instead trudge your own path knowing full well there would be massive obstacles you’ll have to overcome?

Holden: I think instead of therapies per se, I would have just preferred having someone help teach me “translation skills.” if you will. I would want someone to teach me to understand things rather than to just conform to them. That’s kind of what my outlook is with Cade. I don’t want to force him to conform to the world, just learn how to live within it and understand others.

Lyvonne: Do you think you would be different today had you been evaluated as a child?

Holden: For me, that’s a trick question. You see, it would have depended upon my mother’s insistence or not on therapies. I’d like to believe that without therapies I would still be the same kid I was; I just may have understood why some things were harder for me. While with them I may have learned to conform and assimilate, but it may have made me a duller version of myself.

Lyvonne: I’ve noticed there have been a few changes in you since your diagnosis. Do you think those are directly related to you understanding yourself more?

Holden: (Laughing) As long as that’s a good thing, yes.

Lyvonne: (Laughing) Yes, of course it’s a good thing.

Holden: Like I was talking about earlier, I spent 30 years trying to make myself fit into the box of society and not having the feeling I could be me and that it was OK. Not that it’s not OK for everyone to be themselves, because I feel they should be who they are, I just didn’t feel like I fit in and I didn’t know why. Now that I do know and I know it’s OK, I feel like I owe it to myself to be me, to be comfortable being me, and to love myself.

Lyvonne: Since Cade’s diagnosis came before yours, do you have a different view of him now that you can understand him a bit more?

Holden: I don’t know that I necessarily have a different view so much as I now have the ability to understand where he might be coming from with things.

Lyvonne: How has your diagnosis helped you?

Holden: At this point in my life, there wasn’t a lot in terms of quantity that it could do, but it definitely has added to the quality. It’s helped me to better find myself and understand myself and my family.

Lyvonne: Looking back, were all of those struggles ultimately worth it in regards to where you are in your life now?

Holden: Looking back? No. They still bring about horrible memories and nightmares of a childhood misunderstood and lonely. I really wish I’d had the opportunity to know this about myself when I was younger so at least I could have understood it wasn’t my fault that I was different.

Lyvonne: Does that mean there is a part of you that wishes you didn’t know you have autism now?

Holden: No! I would never change knowing it. I’m just upset that I didn’t know it earlier. In reviewing a large part of my childhood both educationally and medically, it creates a certain resentment against those who from my perspective prevented me from being evaluated earlier on.

Lyvonne: You do take into consideration that it was the ‘90s and much of what we know now wasn’t even really a glimmer in the eye back then, right?

Holden: I do. But as I look through the documentation and my memories there were a lot of red flags. Maybe they might not have screamed autism to professionals in the ‘90s but it should have said “not neurotypical.”

Lyvonne: That makes a lot of sense. Is there anything you wish you could go back and tell pre-diagnosis Holden?

Holden: I’d go back and say “It’s OK. Don’t worry about the world’s perception and trying so hard to fit in. One day everything will come together and make sense.”

Lyvonne: Well, I think that is a wonderful way to wrap this up. But I’ll still ask, is there anything else you would like the world to know about being an adult with a new autism diagnosis?

Holden: I would want the world to notice that as someone who should have been diagnosed when younger but wasn’t until the age of 30 — not only can we get married and have families of our own, we can be successful in life and our careers.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by Lacheev.

RELATED VIDEOS


“But there is nothing to worry about; you’re clearly a very good mother.”

Those words struck me cold. Said by my lovely, kind, sympathetic GP as I began my journey to diagnosis.

I had not thought for a moment that my having autism would be considered relevant to my capabilities as a parent.

If I was diagnosed, would they now check whether I was a suitable mother? Would my autism stand against me if ever there was a custody battle in the future?

I looked at the doctor, shocked. Up until that point we had not made eye contact. He looked as he had sounded: friendly and concerned. But it had obviously crossed his mind. As he realized it was likely I have autism, he had turned his attention to my parenting of my son in the appointment room and perhaps was reassuring himself that in spite of my probably autism, I was doing OK as a parent.

It was too late to turn back. The wheels were already in motion. I had thought he was a safe person to talk to. But even seemingly safe people can surprise you.

I love my son. I still remember acutely the days when we shared the same skin. When he was born, I held him close to my chest. And realized up until that point, my heart had lived inside me; now it had a new home in someone else. Pressing him to my chest is the closest thing I will ever know to having my heart in place.

As he grows and roams, my heart tears away from me. I am left here whilst my heart adventures in him. And I would scoop him up and hold him tight and never let him go…but I know this is not allowed. We cannot indulge the ferociousness of our own love, because if we do that, we turn it inside out and it becomes pure selfishness.

He is now nearly 3. Goodness knows how I’ll cope when he is older!

But that doctor’s words left a question in my head: Does my autism affect my parenting?

The diagnostic process for me was long and thorough. A story in itself. Suffice to say diagnoses of autism are not handed out lightly where I live. I had always suspected I might lie somewhere on the boundary between neurotypical and autistic. I was surprised when the report finally came through. There in it were all the things I knew about myself that hinted at autism, and alongside them was another list of attributes I had been unaware of but which friends and family had confirmed as a part of the process. I wasn’t on the boundary at all. I was a fully fledged card-carrying autistic.

Getting diagnosed doesn’t change who I am, but it does change how I look at myself. I am more aware of my own subjectivity and my own fallibility. I am not able to see all aspects of myself. I rely on trusted friends and family to guide me about who I am.

But does my autism affect my parenting?

My whole working life has been dedicated to supporting children with additional educational needs and disabilities, and even as a teenager I worked to this end. I have advocated for so many neurologically diverse individuals. I want them to be recognized as equals to their neurotypical peers. And so I want to answer, “No.” No, my autism doesn’t affect my parenting. I am just as good as the next parent. But it isn’t that simple.

To begin the list.

My autism affects my parenting because as an autistic person I find social contact draining, and I have to be in permanent social contact with my son. And even though I want to be there, sometimes I just run out of energy. And it’s not run out of energy as you would feel when you are tired. It is more like a greying of the world, a fading. I can see him there…but I am not quite with him.

My autism affects my parenting because my brain processes cortisol differently. When levels of this stress hormone get high in my brain, my emotional processing centers shut down. I stop feeling emotions. I still have my thinking. I know I love him, and I act on this knowledge and my actions are the same as the actions of love. But I am not there. Because I am my love.

My autism affects my parenting because my brain processes language slower than a neurotypical brain. I have learned numerous ways to deal with this, so it only now catches me out in certain situations. But one of these is knowing what to say to other parents. I often think of things to say, but I know they are not the “right” sort of things. They are the off-the-wall, old, slightly blunt things my friends know me for saying and enjoy. They are not appropriate small talk at the preschool gates.

The list is endless. And it is endless because every aspect of me is my autism. This is why people with autism often reject person-first language. I am not a person with autism. I am autistic. Everything that is me, is autistic. It is not a thing I carry. It is who I am.

And if you are neurotypical, if I were to ask you how your neurotypicalism affects your parenting, would the answers not be similar? Are there times when your social needs get in the way of your parenting? Are there times when the way you communicate has a negative impact rather than a positive one? Are you a person with neurotypicalism or are you neurotypical through and through?

Everything I am affects my child. I am autistic. So my autism affects my child.

There are strengths and weaknesses to my processing. Like so many of us, I tend to only make lists of the weaknesses.

“But there’s nothing to worry about; you’re clearly a very good parent.”

Perhaps I should re-listen to that kind doctor. What he was watching at the time was my gentle parenting of my son. My personal understanding of how processing language can sometimes be a slow thing means I am good at giving my son time to digest my words. Given time for processing means many of the strops common to the “terrible 2s” are avoided.

My autism makes me aware of how strange and different places can seem at a sensory level, meaning I am able to understand when my son reacts to a new environment and withdraws inside himself.

My autism makes me aware of tiny details, which means I share common fascinations with many 2-year-olds. When he pulls on my hand asking me to stop and inspect a blade of grass growing from a wall, I don’t do so begrudgingly. I am delighted to be shown. My delight lets him know that his interests and ideas are good; it feeds his self-esteem.

This is also a list that can continue.

Diagnosis has helped. Being diagnosed as autistic has helped me to understand where the limitations of my parenting may lie. Consequently I’ve been able to have frank conversations with the staff who support my son at preschool. They help him to make friends and teach him how to play with other children. Something I am no more informed about now than when I stood in the playground 30-odd years ago. It takes a village to raise a child. If I had not been diagnosed as autistic, I think I would have tried to do it all myself, and none of us can do that.

An awareness of how our brains work is enabling for everyone.

The author holding her son, watching ships in the water

Photo credit: Phil Bennett

We want to hear your story. Become a Mighty contributor here.


I was diagnosed as on the autism spectrum when I was about 15 years old. At that time, I had no idea of what the diagnosis meant. I shrugged it off, because I didn’t feel any different than I was before I had been told.

However, other people began to treat me differently (in a good way). They seemed to have more patience and understanding when I was struggling with things. They wouldn’t get so upset when I had trouble with communication or overstimulation.

At one point, my mom gave me a chapter of a book to read. It listed some symptoms different people on the spectrum might experience. I began to realize that my traits I thought were common were not always traits most typical people might have. I began to share my experiences, hoping I could help others to better understand, too.

When I created my old website and blog as a self-advocate, I started out telling people I have Asperger’s. I didn’t really think anything of the term. In my mind, I didn’t see myself as either “a person with Asperger’s” or “an ‘Aspie.’” In fact, I saw myself as both. I titled my book “I Have Asperger’s,” and my Twitter name used to be “Aspie.” (It’s since been edited.)

Then in 2013, the term “Asperger’s syndrome” was dropped from the DSM. Suddenly I had no idea how to explain my diagnosis. Although I’ve technically never lost the diagnosis, some people would insist that Asperger’s syndrome didn’t exist anymore. Even medical forms I would fill out began to drop the term. All that was left was “autism spectrum disorder.

I began to notice arguments in the autism community as well. Are people “autistic?” Are they a “person with autism?” As someone who didn’t even have their diagnostic term recognized anymore, I felt as though this argument was a bit nit-picky. To me, it all meant the same thing, but the argument would bring more confusion to those who didn’t understand the term at all. I decided to avoid the confrontation from either side of the debate, and began to refer to myself as “on the autism spectrum.” This phrase also helps explain the diagnosis a bit more clearly.

From what I understand, some people don’t like this phrase because they believe I’m talking about a straight line with one end being so-called “high functioning” and the other “low functioning.” However, when I say I’m “on the autism spectrum,” that doesn’t have to refer to a linear spectrum. It doesn’t mean there has to be one end or another. Take a color wheel, for example. It still contains a spectrum of colors, but it’s in a circular diagram.

Yes, I’m “autistic.” I’m also “a person with autism.” And I respect that other people may prefer to use one phrase or the other. While I won’t correct people for using either of these phrases when referring to me, I personally don’t like to use them, because they bring out arguments. So I’m “on the autism spectrum.” This is a less confusing way to explain the diagnosis. Not only does it avoid arguments and keep people from telling me the term for my diagnosis is gone, but it also reminds people that autism is in fact a spectrum.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by Pialhovik.


One of the hardest things for me to deal with as an autistic person is people not understanding what life is like on a daily basis. Nobody has any idea how much energy goes into ensuring I don’t mess up too badly or that I “get things done” when they need doing. Well, they might, but many people in my life didn’t until I received my diagnosis, and even then, it’s hard for them to understand sometimes.

Ever been so tired after a busy day that you sit down and before you know it, you’re waking up out of nowhere and it’s the next day already… when you weren’t even finished with the day before? This has been my reality since I was young. A few hours of an activity that didn’t involve being at home, and for the next day or even two, I’m so tired I can’t do anything except lay around and sleep. The exhaustion of autism is real and tangible in my everyday life.

Each day it takes every single bit of energy I have to focus on tasks for the day. If I don’t focus, my mind wanders and before I know it, hours have passed and I haven’t done a darn thing that’s important. I can’t sit and do nothing (literally, do nothing) because if I do, I fall asleep. I must be doing something – writing, reading, on the computer – that is engaging my brain or that’s lights out for me. I can’t sit on the couch without falling asleep, ever, unless I’m doing something. And no, watching TV doesn’t count. It’s easy to oversleep this way, which makes me more tired, and it’s harder to recover from. Some days I sleep 12 hours, others I get eight hours split into two for days on end and I’m fine. I don’t “crash” except after I’ve been out into the world.

If I don’t focus on walking up the steps, I will trip. If I don’t watch very, very carefully when I’m pushing a cart in the store, I will misjudge distance and run into someone or something. I am hyper-vigilant while driving to avoid misjudging and by the time I get home, I’m exhausted. I get majorly fatigued from being out in the world with its sound and smells and all around environment surrounding me, assaulting my ears and eyes and skin from every direction. I wear headphones as much as I can to block out noises and listen to music, because I can’t handle silence, but I can’t do this while driving.

I’m almost always cold. It can be 80 degrees out and I’m wearing a sweater because that’s how my body is. I like to joke that I’m walking air conditioning. At bedtime I have to sleep with a comforter on me, even in the summer, and need to sleep a certain way in a certain position — this is a quirk that was exacerbated by my leg injury.

Clothing is a big one. Shirts must be v-neck in order for me to wear them because otherwise, I feel as if I’m choking. No lace or itchy fabrics can touch my skin and I can’t stand to be lightly touched. I’ve been known to smack at myself when something lightly brushes against me because I can’t handle the feeling. I prefer long sleeves nearly all the time and pants because I hate having my legs uncovered. I’m unable to go barefoot unless it’s to get in the shower and that’s only because wet socks is an even worse feeling than bare feet in the shower. Tennis shoes are my go-to footwear, although I will wear dress shoes if I have to… but only for a short period of time and if they are too awful, I’ll take them off no matter where I am at the time!

Ugh, eating. Taste and texture issues are plenty. I rarely try new food in public places because chances are I won’t like it or am unable to eat it and I will have wasted money. I eat the same foods over and over on a daily/weekly basis with slight variations among what I can eat, and other than salt and pepper, my system is unable to handle the majority of spices. It’s not that I won’t eat food, I can’t, and yes, I do try again occasionally. This has become a problem at random times when people judge me for refusing to eat something. Here’s the thing… if I don’t like the smell, I won’t eat it. This is hard to explain, but my body knows it will make me ill and protects me. Why is that so hard to believe? I don’t know.

I take everything literally. I don’t take as much personally as I used to, but that also requires a mental effort to keep my brain from freaking out in that area. I am able to “give” sarcasm, but most often do not understand when I’m receiving it unless I know the person really well. Written communication is better than verbal, and I cannot effectively engage in verbal arguments because my brain can’t keep up. I can’t recall how many times I was asked “did you hear me?” because when someone talks to me, I will stare blankly for a few moments processing what they’ve said before I can respond, and it’s often not fast enough to please the person talking to me. This is bad when it comes to working, for obvious reasons.

When I’m upset, I have to “verbally vomit” all the negative feelings in order to get over them, otherwise, I will start shaking and become physically ill from the overwhelming emotions. This often makes people think I’m being a “negative Nancy” and sometimes even gets me called pathetic. I feel I have the emotional development of a 16-year-old and often react before thinking because of my inability to “see the potential consequences of my actions,” which continues to elude me to this day. I am 32!

For a long time, I hated myself because of all this, and others picking me apart because of it made it worse. And unfortunately people can still get to me, especially when I see people referring to those who are autistic as monsters or brats that just need their butts kicked.

Let’s get something straight. You can’t beat or smack or discipline the autism out of anyone. It’s a neurological issue, not a discipline issue. Period.

Know how I learn? Repetition. That was the problem with college with me. It wasn’t my type of learning environment. Every job I’ve ever had, they showed me two or three times, made me do it, and I got it forever! Over and over I learned by seeing and doing, not by someone telling me what to do. No matter how many times someone gives me verbal directions, I will never, ever remember them. I need to see them. It’s this way with everything!

Ever experienced having to tell someone something over and over, only to get ticked because they don’t “get what you’re saying” after the first or second time? Yeah, nothing like being on the receiving end of someone’s anger over that sort of thing, especially when you’re intelligent like I am. I felt “stupid” for so many years; it did a number on my self-esteem.

I will never “figure things out on my own” because I just can’t. Not don’t want to, can’t. I know this because I’ve tried. I always did better in jobs where there were rules and directions and things to do in a certain order because that made sense to me. I could learn that, no problem, which is often why I stuck with fast food or retail because anything that left things up to me to decide was a bad idea.

The fact I know what’s happening with me and how I react to things doesn’t mean I can stop those reactions! That’s like knowing you are allergic to peanut butter and saying, hey body, stop doing what you’re wired to do because I said so! Silly, right? If I could do that though, I would, because nobody enjoys being out of control.

I’ve changed and grown, and continue to change and grow, but it’s a terribly long process that required a lot of time and effort and pain. Unfortunately, I learn by doing, and sometimes that meant doing the same crap over and over again until I “got it right.”

By the way, that’s not very effective in life, and people aren’t very forgiving of what they see as you repeating the same mistakes over and over again. But hey, I was left to figure it out on my own for way too long and in many ways, that’s still true. I have more support but nobody wants to tell a grown adult what to do all the time. I “get” it.

But you know what? That saying is true… the one about meeting someone who is autistic, and you’ve met one person who is autistic. Generalizing is bad in this arena as it is in many others. I am speaking for myself here, although I’m sure many will be able to relate.

I’m not lazy because I don’t want to do something. Maybe I can’t despite what everyone “believes” I’m capable of. I’m not “stupid” because I don’t get it. Explain it to me differently. Figure out how to make something clearer if I’m not understanding.

I’m not worthless or useless or anything because I can’t function like you do, or I need more sleep, or after a day out I need two or three days to recover. Nor am I spoiled because I have to have things a certain way to function, or I won’t try a new food out in a public place where I’m likely to get sick. All of these things are part of me. They are how I deal with the world around me so I can be an adult, just like you.

This is just who I am. And all this, coupled with dealing with the world that doesn’t quite know how to deal with it, is exhausting.

And chances are it’s how someone you love is, and what people like me need are the understanding and acceptance of others. Want to help? Figure out a way to help instead of sitting there making judgments about something you are incapable of understanding. Because if you aren’t autistic, you don’t get it and I believe you probably never will. If you don’t know what to do, ask, and please be specific.

Realize how difficult it is not to “be normal” in this world. People often tout those of us unable to “be normal” as failing to take “personal responsibility” when things aren’t going well and accuse us of “making excuses” because so-and-so did it, so therefore, everybody else can too. This is an unsound argument — how many things can’t you do that somebody else can? Tell me, are you not a football player simply because you aren’t trying hard enough to become one? What about a doctor? Is the reason you’re not “doing it all” simply because you’re too lazy to try? None of these things take skill, right, just “try hard enough” and that’s all it takes.

Of course not. That’s absurd, right? It’s how the world sees me though, especially when I haven’t managed to become the “productive adult” I’m expected to be. Why?
Because it’s easier to believe we’re failures, to see our quirks as impediments to the workplace, and our emotional outbursts as negativity that must be squashed. Except you know what we actually are?

We’re true to ourselves. When we finally realize there is nothing wrong with us other than in the eyes of society, that’s when we’ll truly realize our potential. When we’re allowed to twirl and jump and speak our minds no matter where we are, when we’re free from the limits of a day job that forces us to sustain an unsustainable sleeping schedule for our bodies, that’s when we’ll excel.

And all the good intentions in the world to help us fit in aren’t helping because in order to do that, we have to lock away the things that make us beautiful. Society is so focused on what causes autism and how to “fix” us, they don’t see the destruction they are causing, how they are trying to erode and obliterate us instead of understanding us.

Understanding me.

Yet I am not a puzzle to be solved. I’m not something that needs dissecting and examined.

I am a person with neurological differences, but under all that, I am a human who deserves respect. A human who wants love and a family and a fulfilling life as much as many others do.

We autistic people are beautiful and exceptional and loving. We are your friends, your siblings, your partners, your co-workers, and more.

And underneath that, we’re all different. Some will excel at living a “normal” looking life and they are happy, but there are many who won’t reach that level, who have limits they cannot exceed.

Ask yourself honestly: what is so wrong with being different? And if you find yourself saying that you don’t think there is anything wrong with being different, really ask yourself if that is true.

Do you rush to judgment?

Do you look at a kid screaming in the store and think how that person needs to shut their kid up, or take parenting classes, or about how you could get that kid to behave if you were the parent? Do you get annoyed when someone fidgets or moves their body in an awkward way that doesn’t fit with the public place you’re in, or if you see a grown person twirling or jumping or doing something “odd” in a public place?

When someone doesn’t automatically act in a way you find appropriate, do you believe them “stupid” or lacking manners? If you try to explain something verbally once or twice or even three times, do you start to believe the person is incompetent or shouldn’t be working at their job, instead of thinking you are upset because they aren’t working to your standards, even if they are trying their hardest at their own level?

If you ask a person a question and they simply stare at you, perhaps blinking rapidly but not speaking, would you assume they didn’t hear you? Would you speak slower as if you thought this would suddenly make them respond to you? Do you find a person dumb when you ask them a question and the way they answer isn’t exactly what you are expecting from the question?

Is there someone in your life who, when you ask a simple question, goes into a spiel about something that seems completely unrelated after giving you a short answer to what you’ve asked? Are you frustrated by telling someone to do something and feeling as if they are ignoring you because they didn’t do it? Ever get annoyed with someone who you give instructions to find something, only to have to find it yourself because they couldn’t find it even though you only told them where it was, but not to them, you weren’t specific enough?

These are all things I’ve personally experienced and let me tell you, most of them are embarrassing for both me and the person perpetuating them against me.

Of course someone doesn’t have to be autistic to do any of these things, but can you imagine this sort of behavior on a daily basis? Not on the receiving end, but to actually be this way your whole life and unable to do anything about it? How many adults out there are just like me, but haven’t been diagnosed? Can you imagine how hard life is for these people who don’t know they are autistic, and the kind of ignorance they have to put up with on a daily basis?

The same kind of crap I had to deal with for years from people who simply thought me “stupid” and useless?

How many people are hurting from those who treat them badly over something they can’t help… and why are we OK with treating others like they are less just because they don’t perform like a “normal” person does?

Lastly, you know why there needs to be autism acceptance and not simply awareness?

Because awareness is standing there next to an autistic person and knowing we are autistic… and that’s it. Awareness is pointing at a group of autistic people and saying, “they are autistic!” and thinking that’s all it takes for change to arrive in how we’re treated. Like acknowledging us makes our lives better instantly.

But it isn’t. It’s not helping us get a job, or live better lives, or assisting us with those things we can’t do on our own. It’s not getting rid of the idea that the only reason people don’t succeed is because they must have a character flaw, or an inability to take “personal responsibility” for their lives, a belief that is patently false and disingenuous.

“Failure” in the eyes of society has many more factors than just one person’s individual behavior.

We need more than your awareness. And until people accept autism, accommodate those who are autistic, and help autistic people build lives with the strengths they have instead of focusing on everything they can’t do, things won’t get better for us overall.

Isn’t it time things change for the better, for everyone… autistic or not?

And lastly, you’ll notice I refer to myself as autistic. There is this “autistic person” or “person with autism” debate… I am both. Some people want it one way, others want it another… the point is, we (the ones who are autistic or have autism) are the ones who should decide that sort of thing and what to call ourselves, not somebody who has no idea what it’s like and who isn’t autistic.

If you know someone like me or someone with a disability, ask that person what they want, what they feel and what they need. Support is always appreciated, and loving us as we are is the most important thing.

Follow this journey on Violet Haze.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by Marjan Apostolovic.

 


So, I watched all eight episodes of the new Netflix series, “Atypical” in a day. And yes, I’m upset they didn’t include an autistic actor. Yes, I think it’s wrong autistics weren’t consulted in the creation of a character. Yes, it was another show about a more “high functioning” autistic teen. Yes, it was another male instead of a female. Yes, there were stereotypes — again. I still loved it.

Perhaps I should have prefaced that first paragraph with the fact that I am not a person with autism. I am a neurotypical mother who has three children, one of whom has autism. That being said, “Atypical” is not a perfect show, but, is there perfect show besides “Breaking Bad?” As a mother of a child with autism, an autism blogger and an autism advocate, for me, “Atypical” did what it was created to do: it entertained me. I laughed, I cried, I sobbed big, ugly tears and I even shouted, “Hell yeah!” more than once.

It also brought back dark, lonely times. It reminded me of where I once was and where I am now. I felt the loneliness, the uncertainty and the guilt. Oh dear heavens, I felt the guilt after learning of my son’s diagnosis, all over again. I sent a text to my 19-year-old neurotypical son who is away at college, “I’m sobbing through episode four of Atypical. I’m sorry if I ever made you feel less by trying to make Ryan feel more. I love you so much.” Then I went to my neurotypical 11-year-old daughter and held her in my arms and said the same. Then I went to my 15-year-old autistic son and said, “Sorry about all the times I didn’t get it and screwed up.” Yep, guilt.

“Atypical” also made me laugh out loud — remember thing I had long since forgotten. But mostly it reminded me of the progress my son, Ryan, has made, as well as the rest of our family as we traveled this unfamiliar road. And although some of that progress, for all of us, was difficult, it was good to watch this series and be reminded: we did it.

 

I think some of us parents would like to see our child represented in a television show or movie, so people would understand autism and our family. But we can’t talk about wanting our child to be seen as unique yet expect Hollywood to create a character who fits every individual on the spectrum. We can’t yell, “no more stereotypes” then be discouraged when our kid doesn’t fit the next character with autism on our television or movie screens.

Many of us loved “Friends,” but did they hit every demographic of every 20 something in the ’90s? No. “The Cosby Show” was a huge hit, but did the Cosby family represent all black families in America anymore than “Full House” was a good representation of white families? I don’t think so. And as much as we love the day-to-day happenings at “Seattle Grace Hospital,” do you think every hospital in Seattle has a McDreamy or a McSteamy? Sadly, no. And for every 20 and 30 something woman who gathered around their televisions with girlfriends to watch “Sex and the City” while deciding which friend in their inner circle represented Carrie, Samantha, Charlotte and Miranda, many weren’t having sex or living in the city. That’s Hollywood folks.

As a mother, of course I don’t want negative stereotypes about autism perpetuating mainstream media, and I know there are many individuals with autism who are unable to work at a technology store fixing computers who are not represented anywhere in the media. But I love that our autistic adults and children are represented at all. When my son was young, there was no Julia muppet, no Max, no Sheldon Cooper and no Sam. At that time, for me, it felt like Ryan was the only child with autism I knew, and for a while he was. And although “Atypical” may continue some of those negative stereotypes, I hope those stereotypes are at least conversation starters: “Oh, your son Ryan has autism? I watched Atypical, is Ryan just like Sam?” For decades, there was no one on our televisions to even start that conversation.

Here’s the thing, of course I made comparisons to my son, of course I made comparisons to myself, but, just like Sam is not Ryan, I am not Elsa. Did I love seeing a family traveling a journey similar to mine on television? Of course I did, but, part of my binge watching had everything to do with hoping that Sam got his happy ending and transposing that hope for my son. Isn’t that what we all want in life and in a television series, a happy ending?

As for my son, Ryan, he had no interest in watching “Atypical” because, “it’s not a Japanese show that includes anime which is much more interesting than what you are describing.” “Atypical” may not be for you, or my son, but for this mother, the creators of the series did what I believe they set out to do: entertain me and give me a glimpse into another family who also has a child with autism. And teach me a lot more than I ever knew about penguins and Antarctica.

We want to hear your story. Become a Mighty contributor here.


One of my favorite quotes we have in the autism community today is from Stuart Duncan, an advocate who has a son on the autism spectrum. I first learned about this quote when he posted it on Twitter in 2012.

We often say autism is a “spectrum” and this fits perfectly into that definition. When I met Dr. Stephen Shore, another autism advocate on the spectrum who is also an international speaker, I quickly learned about his quote “If you’ve met one individual with autism, you’ve met one individual with autism.”

This quote reminds me that no two people I’ve met on the spectrum have ever been alike.

I was reminded about this recently while speaking about my own journey on the autism spectrum to a third grade classroom. One of the boys who came up to me in Batman pajamas because it was Pajama Day told me after my talk that he was on the autism spectrum. I looked at the boy and smiled. While we continued to talk I was blown away when he told me he knew Dr. Temple Grandin and Stuart Duncan, amongst other advocates. Then he told me one of his favorite quotes…

“Autism is one word attempting to describe millions of different stories.”

I’m thankful to Stuart for authoring this quote for our community to use in conversations like in my exchange with this young boy. We all need role models to look up to. Growing up, I wish I had been aware of people like Stuart, Stephen and Temple. They give me an endless amount of motivation to strive towards what I hope to do in my future, and I hope they will do the same for you.

A version of this article originally appeared on Kerrymagro.com.

We want to hear your story. Become a Mighty contributor here.

Thinkstock image by Istrejman.

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.