The Elusive Autistic Infant

My special, lovely, angry tomato monster is only one and a half years old, and he is on the spectrum. 

I actually knew Griffin was autistic when he was only a couple months old. Plenty of people have tried to talk me out of this, or "reassure" me when I point out the very autistic things he does. Of course, I don't concern myself with those things. I am confident about what I see in my kids every day and I haven't been wrong about any of it yet. Building on that, I am not just "looking for things to be wrong" as people have accused me in the past. There's nothing wrong with Griffin, or me, or any of my kids - autistic or otherwise. I will admit however that I do spend an absurd amount of time analyzing every little thing he does. That's just me and my overactive brain, I guess. 

When people question these things that I know to be autistic traits, it is mostly because they lack the understanding that I have. If you point out one thing, they will excuse it away. "All kids develop differently," they say. "My child/my cousin's child/my little brother did that but he grew out of it." 

There's a fundamental difference here - my baby is part of an extremely autistic family, and these traits are not isolated. They are pervasive, consistent, and an integral part of his character. Realistically though, I don't blame people for not really understanding. As his mother, I can see the motivation behind some of his actions that would otherwise be construed as nothing unusual. That, I suppose, is what they call a mother's intuition - which, statistically, is more likely to discern autism than a pediatrician (but more on that later). 

I am not here to convince anyone that Griff is a little autist, but for the sake of educational purposes, here are some of the indicators that presented early on:

As a newborn, he would sit and stare quietly... for an absurd length of time.  He would literally sit there, awake, without making so much as a single coo. He wasn't sleepy. He was just taking it all in, I suppose... for about the first two months. While sitting there like a robot or an alien, staring off into space or at my phone if I happened to be taking a picture, he would just barely start to furrow his brow. He had a way of almost always looking somewhat puzzled by what precisely the hell was going on out here beyond the womb. 

He also always had a confused look on his face. While sitting there like a robot or an alien, staring off into space or at my phone if I happened to be taking a picture, he would just barely start to furrow his brow. He had a way of almost always looking somewhat puzzled by what precisely the hell was going on out here beyond the womb. 

Newborn Griffin, looking confused and startled as was his usual. 

When he wasn't staring, he was trying to leap out of our arms. I know, some babies are naturally very squirmy. That is not what we were dealing with. Griffin would be content to be held one minute, then suddenly push off from the person holding him without regard to his own safety or presence of gravity. I had not yet experienced a baby this age that would try taking a suicidal leap into oblivion rather than be held for one second longer, and it really caught me off guard. It was like holding a toddler who suddenly says, "put me down," only this was an infant. And he did it for no apparent rhyme or reason. Between my husband, my father, and I, we nearly dropped him pretty much every day. 

He wouldn't give baby kisses. You know how babies reach a few months old (maybe a little later for typical babies... I don't know, because my kids did all this stuff super early until Griffin came along) they start trying to give kisses? They will open their mouths and come at you like a hungry bird in a slobbery attempt to basically eat your face? It is the most adorable but also the most disgusting thing. Every baby does it at some point or another. Griffin never really did it at all. He went through a really small phase where he supposedly kissed his dad, and his grandpa, maybe three times over the course of about two months. I didn't really see it happen, but they assured me it did. Other than that, there were no kisses to be had until much much later when they were toddler kisses. 

He wouldn't smile or laugh for the longest time. Supposedly, social smiling begins around six weeks. That has never been my experience. All of my kiddos smiled much earlier than that. Royal started smiling in response to stimuli around one week old. Not one of my children waited until 6 weeks to smile except Griffin. He took even longer to start doing it regularly. I remember messaging people and asking if they had ever seen a baby that wouldn't smile or laugh. Of course, everyone assured me that it was normal (it is not normal). Maybe they assumed that by asking, I was expressing fear or anxiety over it? I don't know. All I really wanted was validation. "Oh... yeah, that is kind of weird. What a weird baby." "Yes, thank you. He is weird, indeed." 

He hated breastfeeding. I'm a long time breastfeeding advocate from way back. I do it on-demand, I do it all through the night, wherever, whenever. I had some difficulties with Rowan but I chalk that up to being inexperienced. I certainly have had no problems since. Until Griffin, anyways. He would get fussy, and I would try to get him to nurse, and he would get mad. He would claw at me and scream. When he would latch on, he was constantly trying to pull away, and it seemed like he wanted to breastfeed from a distance if he had to do it at all. None of my attempts to pull him closer or reposition him made any difference. He was hungry but refused to nurse for more than a minute. Because of this, I was nursing him for what seemed like hours at a time. He STILL has issues even tough be is primarily breastfed! He will nurse for about one minute, then pull away and shove my boob out of his face. Then he will scream at me until I offer him the other boob. We do this back and forth until one of us is fed up. It's so much fun (not). 

He hated solids, too. When the time came to start solids, I hoped it would have a positive affect on our strained breastfeeding relationship. It did not. You would think that a baby who disliked nursing so much would love being able to satisfy their hunger a different way, but nope. He did not like any flavor or any texture I offered him. I tried to give him potatoes and he let them fall straight back out of his mouth. He quickly decided it was safer to refuse food before we ever got as far as putting it in his mouth so he would bat us away before we got any ideas. He hated apples. He hated yogurt. He hated fish. He hated bread. He hated eggs. He has gotten much better, but the first 6 months were a failure. 

He hated co-sleeping. This is a weird one for sure. I have slept with every child in my bed from birth. I have never had the experience of a baby sleeping anywhere except in my arms for the first two years of their life. Griffin was not okay with this. He would be fussy and toss and turn all night when he was in bed with us, and ultimately I ended up letting him sleep somewhere else when I was so tired I couldn't deal anymore.

When he finally became okay with co-sleeping, he struggled to sleep. Griffin was a decent sleeper in our bed eventually, but only if we didn't touch him, didn't get near him, didn't put the blanket on him and just left him alone. That's kind of difficult when you have a small baby sleeping in a giant bed. I wanted him close enough to me that I could wake up if he moved or anything, but he wanted nothing to do with it. He would kick all the blankets off and scoot far away from me every night. 

He wouldn't make eye contact. As if breastfeeding wasn't weird enough already, Griffin would not look at me while he was nursing. As he got older, I started to notice it wasn't just while nursing; Griffin avoids eye contact quite a bit still. 

He wouldn't engage at all. There's nothing like well-meaning people telling you how to teach your kid stuff, especially when you have six other kids. The "problem" with Griffin is not that I got lazy, or that the other kids do stuff for him. It's not, as my dad suggested, because I need to talk to him. Griffin just won't engage. I have tried saying his name and getting him to look at me. I have tried the to point to things or teach him things, but he is very adamant about remaining disconnected if he wants to. Which brings me to the other issue: 

He wouldn't respond to his name. It's very difficult to get kids to say words or connect on any significant level when you shout their name over and over but they ignore you.

 "Griffin! GRIFFIN! GRIFFFFINNNNNNN!"

*nothing*

The worst part about that besides the fact that it is obviously irritating is that the kids made a joke about him thinking his name is popcorn. This was compounded by the fact that he loves popcorn and would respond to that word whenever he heard it. So they started calling him popcorn and he would respond 99% of the time. He still ignores his own name a lot of the time. 

He had near-homicidal rage. I have seen babies throw little fits. They learn it at quite a young age. Nothing, however, compares to the fury that I have witnessed from my angry little tomato. And the reason I call him an angry tomato is because he has a fat round face and when he is screaming, his entire face turns a scary shade of red. He has already experienced the infant version of the autistic meltdown. We have concluded that during these times, if he had been holding a weapon, one of us would be dead. Not too long ago, he went nuts while we were in the car. I took a soda bottle from him, and he started screaming so hard he could hardly make a sound while simultaneously flailing and throwing himself backwards. He simply did not stop. After about fifteen straight minutes, my dad finally asked if there was something wrong with him (as in... medically wrong. Not sure what that would be). He was freaking out for longer than I had ever seen a baby do so. 

He didn't want to be cuddled. Most newborns love getting all snuggly warm and a lot of the time, just want their mommy. Griffin did not. He didn't seem to care if it was me holding him or one of the kids, but either way, he wanted to be held upright and not too tightly. 

He was picky about his clothes. We had to (still do) be aware of what we were dressing him in. He would be fussy if we put him in fleece or anything restricting. He also would squirm around in his sleeper until he had both legs pulled up into the body, or both his arms inside. I don't know how many times I picked him up to find that his sleeper looked like a bunting and he apparently had missing limbs. 

He would laugh and smile if a sibling was screaming and crying, but nothing could startle him or make him sad. When he finally started showing emotion, it was the wrong one. I hesitate to say "wrong" because, really, who cares? Who is to say what is the appropriate response to anything? But for the sake of saving time, I will just say he did not react in the typical way to most things. He was very amused by the other kids acting hysterical and crying and carrying on. When most babies become easily startled, however, he was unaffected. Nothing would make him pout or cry from actual sadness as most babies do. 

He wouldn't babble or attempt to communicate with attempted words - except to screech like a pterodactyl from Hell. He still doesn't call me mama. He doesn't say hello or bye bye. I have heard him say "owe" a few times, and when he wants to nurse he will point to me and say, "dis." His speech is profoundly limited. He never babbled normally. At the age he should have been learning to string multiple sounds and syllables together, he played with "babababababa" for maybe a few days. He points, grunts, and shrieks. Somehow we all communicate with him just fine though. We never find ourselves frustrated or confused about what it is he wants or what he is trying to say.

He wouldn't play games with us.  When everyone is telling you the "cure" for your baby's lack of engagement, it can be quite a headache. Taking into account that your child will not cooperate at all, it is beyond obnoxious. I'm sorry to inform everyone, but Griffin, despite all my efforts, just wouldn't play with us like other babies. There would be no patt-a-cake. He wouldn't clap or wave. The only thing he would do was peek-a-boo, and that didn't come until he was much older than usual for such a game. He still loves peek-a-boo. 

Okay, so this looks like a comprehensive list proving that Griffin was/is a slug who lays around like a fat lump and does literally nothing. That's obviously not the case. For good measure, I will divulge what Griffin actually does:

He loves to fold clothes. He will take a paper towel or a clean puppy pad if he can't find anything else, and he will spread it out carefully on the table or floor. He will proceed to roll it up or fold it, then straighten it out again. When he is finished, he always grunts at me to admire his work. "See? I folded it," is what he is saying. "Oh, wow, good job!" He smirks in response. 

He likes to pretend that he is a dog. It is the funniest thing I have ever seen. It is subtle and I don't think most people would even notice it. He gets down on the floor and crawls around, shaking his head as if he is eating or playing. I thought it was strange at first because he was beyond the stage of crawling, and he doesn't really behave in a typical silly baby fashion. After watching him for a while, I finally realized what he was doing. I asked him if he was a doggy and he grunted and shook his head yes. 

He has a dry sense of humor. He can make me laugh by making ironic faces. No, I am not joking. He does not do baby humor. Sometimes he will look at me, and then do something super weird like planking, waiting for me to laugh. We have decided he is either a robot or some old German man reincarnated. 

He's also good at slapstick. He will walk up and smack stuff out of people's hands and then look around to see who is laughing. I don't know how or when he learned this, and I know it should not be encouraged but it is SO DAMN FUNNY... when he does it to someone else. 

He loves dancing, but takes it very seriously. He is easily embarrassed about it though. If you watch him too closely he will get bashful and stop. There is very little smiling or joy on his face when he is dancing. I think if any other person saw it, they would say, "how do you know he enjoys it?" I just do, okay?

He has recently started singing - which he also takes very seriously. It's the only time he seems to try to use words. Whenever I say, "Griff, are you singing?" he gets embarrassed. 

He loves the animals. He tries to kiss them and hug them all the time. He also tries to discipline them and gets PISSED when they take food from his hand, and when they bump into him or the dogs hit him with their tails. 

He likes to play with blocks and similar constructive toys. He lined them up the other day (which is so stereotypical of autism, even though none of my other kids have done that) and it was so cute. Then, he built what I swear was a tiny village. It was the craziest thing. Then he stacked them into this super tall tower before knocking it over. 

Most of all, he is such a funny kid. I am constantly amused by everything he does - even when other bystanders are less amused (like when he is smacking one of his brothers for being too close to me). Maybe I would have been more alarmed if my first child had been so noticeably autistic, but this is not entirely new territory for me by any means. I can imagine there are people who think I am absolutely crazy to "label" my baby at this age, but like I said, we are an autistic family. It's not a label at all. It's just who we are. I think I speak for all of us when I say we wouldn't change a thing. 

Today, I am austistic

This seemed like a nice jumping off point for the new blog. I had originally posted this in my other blog, but it is relevant here (and a big part of why I wanted to start something new). For a little context, this was written when I connected the dots and realized that it wasn't just my son who was autistic. At this point I had not received an official diagnosis, and I wasn't sure if I would pursue one. I have since been diagnosed, lost some friends and family over it all, and become obnoxiously comfortable in our autistic way of being. This blog post, however, represents the very beginning of that journey for my family. Enjoy... 

I tried to "come out" about my autism today, but my counselor seemed skeptical... or maybe it was in my head? I am apparently not that great with body language. I didn't know if I was wanting validation or not, and I don't want to pursue the official diagnosis at this time. So what was I looking for? What kind of response did I want when I blurted out that I am 100% sure about my autism?

My autism.  

I learned recently that I am on the autism spectrum. Today, I am autistic. 
It has literally been about three days and that phrase still feels like a complete joke.  I'm 32 years old. Surely I would have known if I were autistic? I have always felt different, and known that others considered me strange and eccentric. I have always had difficulties relating to social norms. But autism? It just feels unreal, unlike my ADHD. When I realized I had ADHD, it seemed like I could embrace it easily. It was like a hat; see my ADHD hat? Yes, of course you see my blaringly obvious hat. It's flamboyant and awkward and it's so hard to miss. I don't have to convince people that I'm wearing this hat. They may be in denial about the existence of hats in general, but they can still see my hat. My ADHD is worn like an accessory that accentuates how the external components of our personalities manifest.
My autism is different.
It's more like my blood; you can't see my blood, and you can't experience it directly. But you know I have blood, right? I am walking, talking, and otherwise existing and that means there is blood in me somewhere. Even the simplest human can grasp that logic - and if there is one thing I relish, it's logic.
The rest of the world feels differently, as I am beginning to understand. I can't just tell people that there is finally a way to verbalize what's different about me. If something can't be readily seen, it is often hard for some to simply deduce the reality of its existence from the evidence.
That's fine... but it sure sucks when you are going on 33 years of being misunderstood.
I have spent the greater part of my life assessing, interpreting, analyzing and questioning everything about my self. It's an innate habit that some people can't grasp. No, it's not something everyone does, and yes, it is an overarching theme in my life that infiltrates every single moment of every single day.

You are a hypochondriac.

I have heard that plenty of times. I can't wrap my head around the motivation others must be anticipating when they accuse me of this. So, you think I am searching out things to be wrong with me? I always just assumed that I was a little more in tune with myself than the average person otherwise they would be able to effectively diagnose themselves the same way. I am aware now that my ability to snapshot every detail and store it in the collection that is my brain and simultaneously connect every dot I have ever created all at once is not a typical trait that everyone has, and it can be a blessing and a curse.
Also, that's technically not what hypochondria is or how it presents, but I digress. It's not your fault you are quick to throw out words that you don't understand the meaning of.

Staring at my phone with a whole list of traits that shook me to my core left me feeling like the stars had aligned for me . I could not only relate to each of these, but they painted a very concise picture of exactly who and what I am; the embodiment of my entire existence.
Almost everyone I know who has received an ADHD diagnosis has felt relief. It is basically as if someone says, "this is why you suck at life," and then you move on to fixing these things to the best of your ability. I honestly haven't seen much in the way of people saying, "no, this can't be right. I don't have ADHD." Most of us embrace it because the validation is needed as is an explanation for why we have these struggles.
Finding out you are on the spectrum seems to be similar. You aren't going to argue it - when you see a long list of traits that you assumed no one else would ever understand about you listed as diagnostic criteria, you just know.  There is no question there. These weird thoughts and ideals and insistence on the principles behind the rules you have enforced upon yourself are tangible. It's the idea behind autism and the misgivings we have about it that cause us to question ourselves when we really do know.

And then you have your "oh shit" moment when you stumble upon a little thing called masking.

Art of Masking: Women with Autism:

The motivation for masking is foremost of the desire to fit in and create connections with others. Masking can contribute to achieving socially desirable outcomes such as making friends, improving social status and perform better in job interviews (2). Camouflaging or using social imitation strategies include imitations like “making eye contact during conversation, using learned phrases or pre-prepared jokes in conversation, mimicking other’s social behaviour, imitating facial expressions or gestures, and learning and following social scripts” (1). These masking or compensation strategies are often very exhausting for the individual to perform and comes at a cost. Masking requires a substantial cognitive effort, which can be exhausting and may lead to “increased stress responses, meltdown due to social overload, anxiety and depression, and even a negative impact on the development of one’s identity” (1).

Even my husband (pretty much the only person who gets me) pointed out, "I remember that. You wouldn't make eye contact with me when we were dating. I bugged you about it, then you started doing it regularly."

Yep.

All the things that I have "taught" myself in order to fit in and be socially accepted are things that, apparently, neurotypical people don't have to teach themselves.
Basically, I have morphed into a completely new person through mimicry and study. There are so many parts of myself that I have "corrected" to make others comfortable and in the process, I am constantly anxious, exhausted, and completely overwhelmed. My sensory issues have gotten worse and worse over simple things like  forcing myself to use spoons. That is such a silly example, but it epitomizes everything for me. I friggin hate spoons. They gross me out and I have severe sensory issues with them - but over the last few years, I have trained myself to use them anyways and just "deal with it" and get through the meal because too many people became aware of my aversion to spoons. It seems small but it comes at a cost, and I realize that now.

I am currently doing everything I can to allow myself to be MYSELF.

I am learning to put on headphones and block out the noise when I need to, rather than putting on a happy face and having a full blown anxiety attack later.

I am learning to spout off whatever random fact pops into my head, because it's who I am and those compulsions keep me from feeling like I have no connection to anyone around me.

I am learning that if I need to make weird faces, sit in a weird position, tap my fingers, pick at my sleeve, feel my cuticles, touch my socks, cover my head with my hood, or wiggle around... those are ALL acceptable. Fighting my stimming compulsions leads to nothing good, except scrolling through facebook for hours and digging holes into my scalp.

Harder than learning that being me is acceptable is learning about all the things that are actually not me.

I would have assumed I was great at recognizing emotions in others. Certain diagnostic tests have shown me otherwise, though. I am seeing a trend in my ability to use logic to determine the motivation and thought processes of people, but emotions just completely baffle me. I will definitely need to work on that.

I thought I was a social butterfly at heart. I must want a circle of friends and someone to hang out with and blah blah blah. That's what every girl wants, right? But why do I pull away so harshly from most social situations and people who want my time? Why do I feel like I am often phoning it in when someone tells me about their personal life and I go through the motions, responding with the material I've learned to parrot - but deep down, I feel like I am not really able to care like I should?  The problem is that I have learned those responses but they aren't always real, and that's not fair to the person I am interacting with.

I am taking time now to stop and ask my husband what is really going on between us as far as emotions and body language, because I just assumed I was right in my observations and he was wrong. As it turns out, and it kills me (all women can relate, not just the neurodiverse) to say that I am the one who is usually wrong in that capacity.

On that note, it has felt great to give myself permission to step away from this world and spend time inside my own head. No wonder the sound of anyone speaking has been grating at my nerves; I don't remember the last time I went into my own little world fully and just embraced the awesomeness of me, myself, and I. It's the much-needed refresher that used to get me through all the complex exchanges I am engaged in throughout the day.

I feel like this would be a great time to check in with my audience.

Are you reading this and shaking your head, thinking, "What in the world? You are not autistic, Abby. Jeez." That would be reaching, wouldn't it? This girl who had only one good true friend at any given point in her entire life, one real boyfriend ever, but now has amassed hundreds of online friends who truly care about her and interact with her daily? No, that doesn't line up at all. Ha!

On one hand, I feel like my whole life has been a lie. Much like finding out I am intelligent, it is hard to accept that Autism is a legitimate part of my reality. I still remember my initial sense of shock being told my IQ is 127, probably even 130 when my processing speed is slowed (thanks, Adderall). I didn't feel flattered - I felt cheated. Why did I behave my entire life as though I am stupid when I am, as confirmed by a psychiatrist, gifted and capable? I could have easily gotten a college degree instead of dropping out of school at 14. Why did I slip through the cracks?

One thing I have fondly come to realize is that your perception of autism in females is PROBABLY COMPLETELY WRONG. There is so little to base diagnosis on with women because we are masters at masking and hiding our symptoms, training ourselves to fit in, and forcing ourselves to live up to the stereotyped female existence. Men simply don't do that. The overwhelming majority of professionals won't even properly diagnose women on the spectrum. The absolute best resource you are going to find is going to be anecdotal evidence from other women who have been diagnosed. That seems fallible, but when you think about it, females on the spectrum are the masters of assembling facts and figures and compiling it into a thorough and expansive self-assessment. I trust my aspie sisters.

As I was leaving my appointment this morning, I spotted a rainbow emerging from the bay and disappearing into the clouds. It is supposed to be a reminder that God won't flood the earth and all that... but it made me think about God's reminder to me that He created me as a beautiful little weirdo who has no filter and is not afraid to be transparent. My gift is best used spreading awareness about things no one wants to talk about, and I am content to sacrifice my comfort for that, always. So, I will leave a few links here that changed me for the better. If you suspect, after all of this, that a female in your life (or you!) may be on the spectrum, please take the time to visit the possibility. Women with autism seem elusive and invisible, but we are actually hiding in plain sight.

:Multiple ASD-related tests:

 The Aspie Quiz

 The Unofficial Asperger's Checklist

Invisible Autism

The Autism Dilemma for Women

We are starting here

 A priest, a rabbi, and a nonverbal autistic person walk into a party. 
The priest says, "Wow, there's a lot of people here."
The rabbi says, "I've been waiting all week for this!"
The autistic says..... nothing.

Relax, it's just a joke obviously. None of the characters mentioned would go to a party. 

On that note, I would like to introduce my new blog.

Introducing a new blog is extremely awkward territory, because you are trying to sell something that hasn't even been created yet. It's difficult to decide what type of voice you are going to use (do I refer to myself, or the blog? Do I verbalize the personification of the text as if it is an entity?). You see, I know from experience that blogging is a fluid experiment that evolves and takes shape over time as you create more and more content. Those first few - maybe ten - posts can be a real bitch, however. The temptation to go back after six months and delete the cringe-worthy material that no longer fits is a true struggle. In an attempt to avoid that future version of myself, I will just lay out what I have as the vision for this blog. 

Ultimately, I want to bridge the gap between the neurotypical and neurodiverse. There is a whole movement taking place right now that stands against oppression of the autism community, but it is so much bigger than that. As everyone knows. autism is a spectrum; more than that, neurology itself is a spectrum. The nuances of mental health as a spectrum invoke the fallacies of how our society deals with individuals who are "different." The outliers who are autistic, ADHD, schizophrenic, OCD, BPD and so forth want the stigmas removed. Those of us on the spectrum want to be accepted and deemed worthy. I, personally, want to see marriages between neurotypicals and autistics thrive. I want to see neurotypical parents defending their autistic children instead of apologizing for them. I want to see autistic people reach adulthood without saying, "I have been ostracized my entire life." More than anything, I want a realistic and relatable example of how these differences present in every day situations. My mission is to give people a different mental picture than hand flapping when they hear the word autism. 

I can't think of any better place to begin this mission than within my family. We truly run the gamut of spectrum diagnosis, and represent an incredibly diverse sample of neurological intersectionality. As a team, we have so much to offer the world in terms of acceptance and inclusivity. We are real, transparent, and for the most part, relatable. 

As a disclaimer, what we have to say is not meant to speak on behalf of everyone. Some things in this blog will, inevitably, be too real or too honest for someone's taste. Situations and conversations will be mentioned or referenced and it won't always make the people involved look good.  What we have to say might offend and it might hurt some feelings. It might trigger some, it might awaken some. The point here is not to make everyone comfortable, but to speak our truth. 

I aspire to perpetuate this endeavor as a collaborative project; I will be enlisting the efforts of the whole family for a wider perspective as well as sharing the burden of coding and graphics (with my daughter, because she is the only person I trust with that responsibility). I hope that in the future, I can host some guest content that will support our mission statement. If you have questions you'd like to see answered, topics you would like to discuss, or if you would like to be involved in contributing here, please feel free to reach out. In the mean time, go make some phone calls or make small talk or whatever it is neurotypical people do.