WHAT WE KNOW

There were so many moments after Alex first started to present similarities to her brothers, that I often questioned if what I thought I was adamant that I was seeing was in my head.

Each time she’d smile at me, or say, “love you, mommy” while seemingly locking solid eye contact, I’d hear that voice in my head question why on earth I thought she had autism. “She clearly loves fiercely and without hesitation, both thriving on connection, while also seeking it out,” I’d tell myself. “How could she possibly have autism?”

But then she’d leave the drawers in her room open again, even after I'd already closed them once behind her earlier in the day… and all the light switches had to be in the upright position, which typically meant she left a trail of leaving all the lights on in the house. 

She’d rub the ears of her lovey with such repetition that she could tell which well-loved giraffe (as we’d purchased multiple the moment we realized that was her chosen comfort lovey) were those of her preferred version, or one that hadn’t been there for all the moments she needed her because her ears did not feel the traffic and wear and tear of her troublesome fingers.

On the rare occasion I’d have to tell our well-behaved and people pleaser of a daughter, no, she’d melt-down into a complete puddle of shame that would take upwards of 30+ minutes to exhaust herself so that we could comfort her out of it. 

When I asked her teachers at school about if they were seeing similar behavior, they said not at all, and would beam with pride that she was one of their favorites and just such an easy going kid. Two of the most talented caregivers and educators I had seen to date, reassured me that Alex knew what was expected of her, and went through her days with ease and pride.

And when I pressed them, to provide explanations to why they were seeing what they were seeing at school: that they had a phenomenal routine with clear boundaries that children on the spectrum, particularly high functioning, would excel at because it was the same every day; and that yes, she was our carefree and fun loving kid because she had no problem playing by herself for hours, but at this age she should want to interact with her peers. 

Her teachers did not know, because they paid attention to each of their students, and simply adapted how they worked with each of them to how they learned best. They saw Alex’s strengths, and played to them, working their hardest to always set her up for success. While they did push that she definitely needed to be evaluated for speech, as she was significantly behind her peers in that area, they thought that once the words would come, some of our concerns may fade. 

The day care Alex was at when she turned 2, and is still fortunate to be at today, is an outstanding program, and she seriously scored the lottery with her teachers. I say this because without that knowledge, it may sound like I’m placing blame, which I am not. But you don’t know what you don’t know, even when you are as truly good as you are. 

On “Celebrate Friends” day, when Alex didn’t want to take a photo with her peers, we were sent home the most adorable photo of her widest grin in between the two teachers she adored so much. After the initial “Awe, what a great photo” moment, as I scrolled the feed to see how her friends posed with their peers they chose, my inner voice spoke up saying “pay attention”.

On the day that I arrived to school to find my typically “she had a great day” welcome halted by my girl in a shame puddle, shoulders full closed over, knees in a V shape and head down while tears poured onto her lap, on top of the picnic table,  I looked at her favorite teachers questioning the scene met with a smirk and response of: “We explained it’s not safe to dance on the table, and asked her to get down”. While simultaneously making my way to scoop that puddle of shame up into my arms and smother her with love, I laughed back “Oh dear, guess that’s one career we won’t be chasing, huh Ali girl!” putting all at ease while ensuring she felt safe in her spiral.

But then, on the day that I pushed back a bit, asking that they interrupt her routine and expect the unexpected from her, they suggested that maybe we were seeing certain behaviors at home because she was learning behavior from her brothers. In the moment I bit my tongue as tears of frustration and fear welded in my eyes, and did the best I could to just get Alex to the car without completely breaking down in defeat. 

When it came time to have them fill out the forms the state requires of both parents and educators for an autism evaluation, looking to compare her behavior at school with her behavior at home, the comparison looked as if the forms were describing two different girls.

I want to reiterate here, that you don’t know what you don’t know. And when you love someone, especially the way I know these amazing women love our daughter, your mama bear defenses can go up, ready to argue anyone who says there’s something off with your cub. We couldn’t love them more for it, and we do understand why we were seeing what they weren’t.

But when it was finally time for Alex’s evaluation and my daughter and I sat in front of three new women whose job was to determine what they saw of the young girl in front of them, the conflicting forms gave room for the evaluators to see only the obvious, without taking any time to determine a behavioral baseline and understand what was in front of them. 

Even after an hour and a half of observation, much discussion, and many questions looking for greater clarity regarding the discrepancy in the forms from school and home, the three doctors sat with confidence when they told me they saw no signs of autism in Alex.

I sat in disbelief as the doctors shared that the girl they saw in front of them had too much autonomy and confidence, worked too hard to engage, and had far too great of abstract thinking to possibly be on the spectrum. 

When asked to give specific examples, as I had also been present for the entirety of the evaluation, very confused as to what I saw was so clearly different from what they saw, they shared the following confidently:

Alex displayed great autonomy as she completed the tasks asked of her at the table with one of the doctors, consistently looking back with pride and confidence to “show off” to mommy each time she got an answer right.

During the time when a doctor purposely ignored Alex, my daughter worked diligently to get her attention back by laughing loudly and asking the doctor “if she was so funny!”.

And then finally, as my greatest confusion in their conclusion sat on the concept that my three year-old who was struggling to find her words and communicate in general, could have too great of abstract thinking at this stage of her life, they said that she had no hesitation taking two objects that had nothing to do with each other to create a game that displayed her wits and creativity.

As every emotion swirled inside of me, I whispered to myself, you don’t know what you don’t know.

I gathered whatever strength I had left, trying to seem composed and unphased, and asked, “do you think you had enough time to determine a strong behavioral baseline to support those conclusions?”

The doctor’s posture stiffened, her arms crossed pinning her clipboard against her chest, and she said “I’ve diagnosed many girls on the spectrum over the years, and know what I’m not seeing.”

I nodded, trying to smile, but feeling sad for each girl like mine who had come in and performed exactly as she was taught, and been dismissed by this incredibly brilliant and impressive doctor (because she truly was). 

As I rose from my chair to leave, and held my daughter’s hand tightly in my own, she gave me one final piece of advice: “you need to parent her like she is a neurotypical and she’ll act like she is a neurotypical.”

My heart still hurts as I sit in that memory.

I know how many lost and confused parents that very talented doctor comes across each day. I know because my wife and I were those parents when we had the boys evaluated. We had no idea. Those parents are looking to her to tell them what they don’t know, where this time around, I was dumbfounded that even when I explained what I saw, she refused to consider the possibility she did not know what she did not know. 

I know that our daughter does not flap, or line her toys, or display a lack of interest or attention in human connection.

But I also know that our daughter has lived on her tiptoes since the day she could walk.

And that when we first got into that evaluation room, she looked to me in fear, but understood that when I told her “It’s ok, you’re safe”, that she was to go on and participate in the evaluation the way she had in the 4 similar sessions (during the last three months) with all female staffs, in white rooms, with random toys. 

I knew that each time Alex looked back at me, displaying that “confident autonomy” the doctor (who’s Alex’s back was toward) was incorrect in reading her body language, and that Alex was looking for acknowledgement that she was participating and ensuring I saw that she was doing well, as that is what we people pleasers do - look for confirmation that we are doing it correctly.

I knew that when the doctor ignored her, my daughter got so nervous that she’d done something wrong, she performed what she knew (to make someone laugh) in order to not fail, because even at this young age my girl is in search of perfection, despite that had the doctor continued to not participate - or worst, told her that she had failed, she would have melted into a shame puddle and the session would have gone incredibly different.

I also knew, that my tomboy of a daughter, who only wore her brother’s clothes, and had no interest in dolls or dresses, knew just what to do with the snot sucker (plastic bubble tool that you literally put up a child’s nose to suck out their boogers), and nerf dart she was handed; not just because she is obsessed with her brothers and their interests, but because her very thoughtful uncle had brought three rocket kits as gifts just days before to play with each of them, where they worked for hours to put a styrofoam rocket (basically a very large nerf dart) onto a plastic tube that was connected to an air pocket that when jumped on, blasted that styrofoam rocket into the air.

Had the doctors looked at my child, the way her teachers did, as an individual to be evaluated not for what she might have in common with children typically known to be on the spectrum, but as the third in a family with diagnosed autism displaying textbook signs of what a high functioning girl on the spectrum displays at this age, they would have altered their standard testing for boys her age, and looked to get past what her behavioral baseline was, to see what the doctor who spent days with her only a month ago saw clearly. 

But as we don’t know what we don’t know, I share this with you now, in the hopes someone else will learn what they need to in time for someone who’s parent hasn’t researched autism for 3 years, and whose child isn’t experiencing an academic interruption to where others may take notice.

This article sums up what I’ve learned to be true for high functioning girls on the spectrum who are hiding in plain sight.

Symptoms like delayed speech, meltdowns without an ability to self-regulate (or shame puddles as we call them), irritability/inability to be flexible with change, the need to self-sooth (by rubbing her lovey’s ears) despite a lack of displaying repetitive behaviors (like how Luca flaps), and attachment to certain objects despite not lining them up were all things we identified early on with Alex, and see in high definition since understanding how they display differently in boys and girls. 

As I continue to share our journey, I’ll try to give greater detail of specific examples that may help break the stereotype that keeps so many of our girls hiding in plain sight but for now, the most important thing I hope to share is the importance of a behavioral baseline. 

Often known as a mother’s intuition, a behavioral baseline is merely knowing what is typical for your child. When you know how your child typically acts, but find that in specific scenarios it is “more than her/his peers”, that’s when you can understand what neurodiverse wiring is. 

When the “more than” becomes the standard, then there is a good reason to try to understand it further - both what is driving the behaviors to understand what the behavior is trying to communicate to you, but also if the behavior comes from a “can’t/can” or “won’t/will” perspective. Neurodiverse children simply can’t self-regulate, so what might look to some as a tantrum (or a child working to manipulate a scenario to get their way), is actually a meltdown (where a child can’t self-regulate and get out of their own way to calm down in an appropriate fashion). 

The best way to know more than what you know is to get curious, really think through what you are asking, and try to ask a scenario in a few different ways. If all of the answers reiterate each other to be true, then the consistency should tell you there is fact behind it. If that fact is stating the child is experiencing an extreme difference than their neurotypical peers, there’s a good chance it’s because of the way they are wired.

During the last evaluation, when the same amazing teachers were given forms looking for what is formerly known as aspergers, their answers were very similar to our own. Yes, they had watched our girl experience many different shifts in routine, particularly after starting her speech therapy and participation in an inclusion classroom three times a week, only coming to them afterward. 

Simple shifts like the fact that every Thursday morning she had to watcher her brothers get on the bus that she would get on each day of the beginning of the week, and she wasn’t allowed due to no class for her that morning, would create chaos for our girl until she could find her place in her known routine with her teachers. As these moments became more frequent, it was easy to recognize what we had been speaking about at home, especially on the day we had to take her to the actual evaluation, and were not able to get Alex to go into daycare afterward, despite working every strategy we knew of while she nearly stopped breathing because she cried so solidly in the car refusing to get out of her car seat. 

These two teachers have now become even greater champions for our girl, and understand - and know - something they did not before. They know that we never once were trying to say something was wrong with our girl, or fight for a label that could create unwanted diversity for her for the rest of her life. They know that we knew she needed more than we could figure out on our own, and that there were programs out there that could help us create a map to follow to get her what she needs. 

I know this was a lot to put into one blog post, and if you stayed with me- I appreciate you more than you know.

To all the girls who have grown up feeling lost and completely unsure of who you are; shameful for being known as dramatic despite how exhausted you are working to be what everyone else needs you to be; and know what it means to be frustrated for feeling so stupid despite knowing your intelligence that can’t be found in a moment of big emotion - I see you. You are not alone. 

There is a generation of women learning about just what our wiring looks like, why it makes us understand a situation to be what it is, and as one of them willing to be completely vulnerable as I work to make sure my daughter knows she is worthy, enough, and protected, I promise you that any answers I find I will share with you. We are not alone in this. xo

THE IMAGE

Photography was always something I was drawn to. 

First in college when I walked the walls of my alma mater and learned that one could take an extra curricular and learn how to capture an image, expose it to the world as how you viewed that moment, and then look to that world on their opinion of your vision.

As someone who was already enrolled in too many courses, working on a double major with a minor, the class just never rose as priority enough to make it on my schedule.

As social media became the way we expressed ourselves and sites like MySpace and Facebook brought opportunities for creative expression and communication, I learned how images could show connection, importance, and participation in activity that gave an appearance of being part of something. If you were in a group photo showcasing smiling faces and the capture of a good time, then you must be someone others wished to be around… aka worthy of others' time.

But then, when my cousin died unexpectedly my senior year of college, and I found myself lacking any photographic evidence of our time together, I learned that photographs did more than just suggest moments in time… they froze moments in time to remind you what they felt like when memory begins to fail you decades later.

It wasn’t until my wife and I arranged to have our engagement photos taken, in the most serene New Hampshire setting, that I learned that photography could also teach someone in a way that words could not. Those photos, where my heart was undeniable, and I stood in my truth for all to see, showed me that there was a way to explain to my family who had never truly known the women they were about to see in those photos, could and would believe my truth without question.

When I started this blog, I believed that the years I spent practicing photography and working to capture others' memories as they hoped to remember them would provide my readers insight in a way a blog without photos could not. I believed that as I shared our journey with autism, I could show the connection, love and empathy each of our children have, while discussing the struggles we were working through as a family, in the hopes that any misconception someone may have about autism could be challenged by a photo showing a child who is loved and not only knows how to love, but chooses to love in return.

For the last two weeks, I have written incomplete drafts on where to start on catching readers up on our last year, and where we are currently, that simply could t find traction. Although I hope I am able to use them at one point, my stream of thought simply keeps returning to photography- and my why around it.

There is a reason why over the last two years, images of parents struggling, looking worn and distraught, near the edge of no return, have gone viral on the internet, sharing stories of just how hard parenting has been since COVID began. 

Sure, I have shared a number of them on my own social accounts, and even written many of my own, that were shared on my behalf as well. But I am going to say what every parent/caregiver already knows about why they’ve gone viral, but never wanted to admit. Ya’ll parenting has always been hard. 

True, COVID took down any escape one had from parenting when child care of any kind was no longer an option, an escaping to a workday with coworkers who felt like family was no longer such a relief of a retreat… but there have always been laundry rooms overflowing with laundry that is lucky if it gets cleaned forget folded and put away to be easily accessible when a family member needs to get dressed… there have always been (and will always be) houses where voices bellow from every nook and cranny as they work through whatever hard they are going through, that neighbors can hear without any privy to what the hard is causing such a racket… There have always been (and always will be) individuals keeping the group of humans under one roof going, without ever feeling seen or appreciated.

What COVID did was take away the space to breathe and reset in between all the hard, forcing us all to operate at full capacity, without any space to have “life’s hard things''that we would once have capacity to bear, feel unbearable. As someone who was handed what feels to be a never-ending unnecessarily level of hard nearly six-weeks ago, I can tell you first hand why no photos have come from our last month as a unit showcasing the less-than-hot mess we are functioning at. I can tell you the snapshot of a human I have looked like at morning drop-off in front of so many of my children’s peers and their parents that initiated check-in calls and faces of concern and pity. 

But just as I was trying to figure out what on earth I could share lately that could be of any value to someone else on this journey, I found myself chatting with another mom I admire greatly, about something as silly as fresh pasta I found at Market Basket. What had felt like such a selfish treat for myself, as it was not something anyone else in my family would eat, and would take easily 30-45 minutes of my attention away from a chaotic evening hour on a school night, had felt like a moment where I had put myself first in a way I hadn’t since my wife had her injury two weeks before Christmas.

As that mom had shared her excitement I had discovered what she and I both felt to be such a luxury, I swallowed my guilt around what something so simple felt like, and then continued our small talk like usual… until I found myself admitting why I was so excited about the meal that had made me feel like I could breath for the first time in weeks. 

Thankfully, I didn’t list out the number of lunches I had made, laundry I had done, rooms that I had picked-up, emails that I had returned, parent-teacher phone calls that I had taken, meals that I had cooked, or dishes that I had cleaned. I didn’t confess that I had begun to resent the sound of “mommy” because all I felt I heard lately was, “Cinderella” which is why I was losing my cool so often and had become this martyr version of myself that I didn’t even recognize, or that everytime someone asked me how my wife was feeling through recovery, I wanted to scream “she’s enjoying every moment of my dream of getting to watch netflix all day with meals served to her and no kids around!” 

Instead, I thought it best to ask for advice, because just that day I had spent an hour in therapy and despite that I felt good after leaving, found my presence at home to have not improved, and started to worry if I could really keep going. Here was the perfect insider to ask, so in the attempt to put my own life jacket on so that I’d be able to save others, I went ahead and asked some exhausted and full of self-pity version of the question no captain of the ship wants to be asked: “How do you do it all?”

As the words were sent though the digital atmosphere, and I was able to breathe again remembering the meal, feeling less guilty with the confession, I found myself stewing in a different kind of guilt. 

This mom I admired and was so fond of, I had had similar conversations when COVID first started about how impossible parenting during a pandemic was. I had applauded her each time she had posted an activity with her boys that seemed just so FUN and intentionally present for kids, in easy that I wasn’t able to when I was overwhelmed with my anxiety of how to make it through another hour before bedtime when our kids seem to be at their peak of exhausted energy and chaos. I wondered why I couldn’t seem to be that kind of present for our kids, and often wondered what it would be like to parent neurotypicals.

This mom had been someone that when I had the chance to take her family photos, I shouted publicly from the rooftops how truly amazing she was in each share of each photograph of her smiling boys that gazed with such love and appreciation up at her. I only knew of her what she shared through her social channels, and what she shared with me in conversation but she was someone I believed deserved every glowing review one could give her.

I believed that because the first time I had met her, was as a brand new mom, in her home, to take newborn photographs of her first son. She had been a friend of my wife, who had seen my work online, and liked it enough to hire me (and pay me her hard earned dollars as a self-taught photographer) to capture her beautiful family in their first days together.

When I took those family photos a better half of a decade later, skills vastly improved from the first go around, she was still holding closely to two of her men that loved her. The difference was, that in our last shoot, the mom stood proudly with two sons, and in the first, she sat with her husband gazing adoringly at their first born. 

This mom that I felt so guilty confessing my selfish reclaim of some “self-care” as I tried to survive what felt like single-parenting and then some, had been doing it for years, not weeks. In that moment of entirely selfish guilt, when I asked her unfairly how she did it every day, she humbly shared some tips and tricks that did make it easier. She said that although she tried to post what was fun or funny about their chaos, they were only moments of the real thing. And that often, she felt everything I was currently feeling. She confessed that on days that the unnecessary hard felt unbearable, she held onto the reminders that her kids think “the world is a really pretty place” as her son had told her one the car that afternoon. 

Her humility in that moment gave me the strength the next day to say all the things to my wife, who is still here, that felt unnecessarily hard since her accident, without concern for how it could hurt her, because I had been walking through the last six weeks bottling it up inside like I was alone, and needed to realize I was not. 

In what was definitely an emotionally charged discussion, she ironically brought up that we were not that family in the photos we hung on our wall, or that I shared in my blog with you. That what we were in currently didn’t feel like those smiles of love and connection and empathy, implying that those felt dishonest and a coverup to what we show to the world.

In that moment I was able to say clearly, what photos like those mean to me, and why photography has been all I can think about for the last two weeks as I try to find something to share about our journey that could mean enough for someone else to be worth a share.

I don’t believe we take the photos to tell a lie to the world. Photographers, like myself, don’t take ten times the amount of snapshots at a photo shoot, to then spend hours culling those images to find just the right ones to hopefully edit (and sometimes even combine) to showcase a lie of smiling faces of children who look up adoringly at their parents with love. The final result of photos that are shared with the world, that we keep with us over time, as we age, change, grow, and sometimes don’t always stay as the same humans in that photography are taken for one reason: to remind us of the truth as to why this life can feel so unnecessarily hard.

As Glennon Doyle has made so catchy (and a mantra I hold tightly to) from her book Untamed, when we choose to: “we can do hard things.”

We take those photos and have a professional spend hours getting a chosen few just right so that we can look at them during the unnecessarily hard to remember why we are here in the first place, and why it’s important to continually remind us that we can do hard things.

We take those photos in the hope that our kids will remember the moments we show on social media and display them on our walls so that they have something to show to their kids in the years when we are gone. 

Through what felt like a never-ending river of tears that had been barged up for six weeks and finally busted through that dam, I told my wife that we take those photos so that when they try to remember this chapter she and I are navigating so poorly, that we figured out how to do it together, and that when you are in a marriage it will not always be easy, and that it will take work and effort, and choosing each other each day to keep going.

We don’t share the hard with the world every day because it’s not what people want to read when they’re scrolling their feeds. They want to think you are who you are in those photos so that there is something to work towards, not just sit in when you have to make the choice to do the hard or not.

But we can, and we are, every day, doing the hard things. 

Focusing on the photos that remind us why it’s all worthwhile, and hoping the work put in now, provides so many moments for photos for decades to come. 

To the mom who shared with me that every moment isn’t fun and intentional, but it is possible and I am able to choose to do the hard things, you are my everyday hero, and your boys are so lucky to have you. 

To all the parents out there, who know what I mean by covid didn’t make parenting hard, remind yourself that what’s hard is when we feel like we are losing ourselves without any time to breathe in between the hard things we choose to do every day.

To the friends and family members who have helped our family over the last six weeks, and particularly to my sister, Granny & Pop-pop, most amazing nanny, and dear C family for continuing to make sure we remember this is temporary - we are forever grateful. 

And to our incredible kids, when you read this one day, remember that your moms love you, and are real people trying their best to get through what can feel unnecessarily hard because you three are worth every second of it. The easiest part of all of this is loving each of you. Don’t believe us? Look at all the photos… xo.

2022: Not Just "Twinning" With Autism

I’m often asked, how one knows if they or their child is autistic?

It’s been the question at the top of my own mind for the last 13 months. A fixation, if I confess fully, that had me so caught up that it left me speechless until I could find the answers. And now that I’ve found some, here is what I know.

The DSM-5 categorizes autism as:

Autism spectrum disorder (ASD) is a developmental disability  that can cause significant social, communication and behavioral challenges. There is often nothing about how people with ASD look that sets them apart from other people, but people with ASD may communicate, interact, behave, and learn in ways that are different from most other people. The learning, thinking, and problem-solving abilities of people with ASD can range from gifted to severely challenged. Some people with ASD need a lot of help in their daily lives; others need less.

In my experience, having now gone through 5 evaluations (one for each of the twins, two for Alex, and one personally), the one outlying factor that places a human on the autism spectrum is the inability to connect with others. Yes, as mentioned above, there is always a communication deficit (typically a speech delay), and some evident need for self-stimulation or lack of ability to self-regulate, but the most commonly noted is the lack of connection.

However, what seems to be consistently ignored in the last decade, is that prior to 2013- when Asperger Syndrome” diagnosis was eliminated from the American Psychiatric Association’s Diagnostic Manual of Mental Disorders, 5th Edition (DSM-V), one of the differentiators between Aspergers, otherwise known as High-Functioning Autism, and Autism (what was considered to be lower-functioning autism), was that those on the Asperger’s end of the spectrum lived for connection with others. Where their wiring was criss-crossed was their ability to interpret connection with accuracy. Now that the diagnosis of one having Autism Spectrum Disorder is all inclusive, that lack of wanting or ability to connect seems to be confused for all who fall into the category, where once was a indicator otherwise.

As I’ve clarified in the past, I have no medical education that makes me any sort of expert on this subject, but have been living with it “officially” for the last five years, so I’m simply sharing our experiences in case it can help others. Here is how I can best explain the difference in the two ends of the spectrum.

Our twins, who have been diagnosed since 18 months, couldn't be more opposite. Yes, in their looks, in their likes, in their personalities - all of it. Very little do they seem to have in common.

This is also true for their autism.

Where Luca falls on the lower end of the spectrum, otherwise known as a category: 3 for (Autism), Jack falls on what used to be known as Aspergers, but now is diagnosed as a Category: 1 (High Functioning Autism).

(If you want to learn about the 5 categories quickly, I find these definitions to be most helpful.)

I have to state for the record that I simply despise the nomenclature this diagnosis goes by because our boys are equal. They came into this world together, only minutes apart, and each is capable of exactly the same thing. Yes, their challenges are different, but all humans are challenged whether or not they admit it. What the diagnosis has given us is more of a map to understand how they are wired, and do our best as their parents to communicate with them in the ways that they learn best, and hopefully support them in the areas they struggle. Outside of opening up our family for support from the medical and academic communities, which we have learned we truly need and our children greatly benefit from, having a diagnosis listed on their medical chart changes nothing about who they are as individuals. The work they do every day; that we do with them; that is what changes what their lives could be tomorrow, and each day forward.

When the twins were evaluated, their team was looking for the following signs (taken from Autism Society’s website):

• Speaks later than typical or not at all (nonverbal)

• Repetition in language or movement, such as repeating the same word or sounds, hand flapping, or any repeated movement 

• Atypical nonverbal communication, including avoiding eye contact, giving few facial expressions, or having a monotone

• Prefers solitary or parallel play rather than engaging in associative or cooperative play with other children

• Extremely distressed by changes, including new foods or changes in schedule

• Preference for predictable, structured play over spontaneous or make-believe play 

• Strong, persistent interest on specific topic, part of a toy, or item

This list, for our twins, is literally split down the middle.

Although both boys were significantly behind in speech (which again, we thought was due to being twin boys, and maybe they just had their own language that they spoke to each other), the rest of the list is split perfectly down the middle between them.

For Luca, he was our hand flapper, our spinner, our one who never stopped moving. He would rock in his high-chair to soothe himself through the heart-burn that he took medication for until he was just over a year old. When something was too loud for him, or felt like sensory overload, you could see him move his body back and forth to calm himself down, almost as if it was focused on the movement to distract him from distress. To this day he will still find the border of a room and walk it with insistency, and even occasionally flap his hands when he is incredibly overwhelmed.

There were months when we thought perhaps Luca was deaf in an ear and just couldn’t tell us, as he wouldn’t always look to you when you’d call his name. Each time we’d think it was time to go to audiology, he’d sing the tone of a song so on pitch you thought it would be impossible that he was deaf. It wasn’t until he went for tubes in February of 2018 that we learned his tubes were so blocked that he was in fact nearly deaf in one ear, and not only did he have tubes placed, but we began working with audiology to ensure he took antihistamines anytime his allergies could be bothering him, as when his allergies clogged his nasal cavities, it also blocked his ears. 

Although the hearing question had been answered, we still found that we had to call his name multiple times before he would lock eyes with us to confirm we had his attention. Even then, getting a facial reaction from him took extra effort, and usually a sing-song voice to light up his eyes and show his dufrene markers. *But, when you did, man could that boy’s smile light up a room (and still does - every time)! 

And when our pediatrician had told us during the earliest visits of having newborns that we’d find one of the twins would be the “easy” one, we assumed that Luca’s preference to play by himself for hours with preferred toys just gave him that title. As the evaluations began to look at autism, I remember saying to them, “please don’t touch our easy one, he’s our hippy, he’s so easy please, he just beats to the beat of his own drum.”

For Jack, it was the resistance to any sort of change, or interruption in routine that was a clear identifier. The struggles we would have in needing to get him into the car on an errand that just “came up” felt impossible for him. Not to mention that we should have bought stock in Lays Sour Cream and Cheddar Ruffle Chips and White Cheezits because they are the two foods our boy has eaten with every meal since he was able to tell us what he wanted to eat. Yes, we’ve added a few other foods to the list, but his diet is limited and particularly specific.

Jack had, and still has, a very hard time with spontaneous or make-believe play, which is often hard for outsiders to believe, because his imagination is impressive. He is a natural born storyteller, who can perform with great animation. He cannot however, play on his own, or with a peer, without understanding the rules or what is expected of him. (And please note that I say cannot, not will not, as they are two very different things.) His heart suffers in frustration and embarrassment when put in a “play” situation where someone isn’t dictating to him how the game must go, or introducing to him how he wishes to play. Where Luca can take a preferred object and play for hours by himself, lost in a world that only he is in, Jack simply stares at a blank slate. However, when given a script, he can feel every emotion needed in the imaginative play, and fully-take on the character he needs to be to successfully be part of the game.

Lastly, although yes, Luca has his preferred items that have stayed consistent in terms of interest: Penguins, Animals, Birds, Disney Cars, etc… Jack fixates on characters. He becomes amazed by the unique story each has, and learns everything he can about them so he can truly know them. I’ve learned that the characters he chooses, tend to represent tortured souls with some kind of multiple personality. Early on it was Sonic the WEREHOG, not the hedgehog, who is the version Sonic turns into that is incredibly strong and angry and wild when the moon comes out (like that of a werewolf), but is Sonic during the day - the happy-go-lucky people pleasing hedgehog who is friends with everyone. (Sound familiar?)  

The thing is… according to Autism Society’s definition on Aspergers… Jack’s diagnosis may have been missed had he not had a speech delay, because what I’ve learned in each evaluation is if the child doesn’t stimm (flap their hands, rock their body, etc.), and can make eye contact with a desire to engage with others, then the evaluators don’t worry about the rest. I believe it’s because the number of cases of Autism has nearly tripled over the last three decades, and early intervention is there to help with the potentially academically delayed children on the “lower functioning” end of the spectrum, like our Luca. Which I guess is understandable, because if you only have so many qualified team members in a school system to assist children with a diagnosis, then you have to do your best to not overload them with those who may be able to help themselves over the years.

Here’s Autism Society’s explanation of the differences between Autism and Aspergers: 

“What distinguishes Asperger’s Disorder from classic autism are its less severe symptoms and the absence of language delays. Children with Asperger’s Disorder may be only mildly affected, and they frequently have good language and cognitive skills. To the untrained observer, a child with Asperger’s Disorder may just seem like a neurotypical child behaving differently.

Children with autism are frequently viewed as aloof and uninterested in others. This is not the case with Asperger’s Disorder. Individuals with Asperger’s Disorder usually want to fit in and have interaction with others, but often they don’t know how to do it. They may be socially awkward, not understand conventional social rules or show a lack of empathy. They may have limited eye contact, seem unengaged in a conversation and not understand the use of gestures or sarcasm.

Their interests in a particular subject may border on the obsessive. Children with Asperger’s Disorder often like to collect categories of things, such as rocks or bottle caps. They may be proficient in knowledge categories of information, such as baseball statistics or Latin names of flowers. They may have good rote memory skills but struggle with abstract concepts.

One of the major differences between Asperger’s Disorder and autism is that, by definition, there is no speech delay in Asperger’s. In fact, children with Asperger’s Disorder frequently have good language skills; they simply use language in different ways. Speech patterns may be unusual, lack inflection or have a rhythmic nature, or may be formal, but too loud or high-pitched. Children with Asperger’s Disorder may not understand the subtleties of language, such as irony and humor, or they may not understand the give-and-take nature of a conversation.

Another distinction between Asperger’s Disorder and autism concerns cognitive ability. While some individuals with autism have intellectual disabilities, by definition, a person with Asperger’s Disorder cannot have a “clinically significant” cognitive delay, and most possess average to above-average intelligence.

While motor difficulties are not a specific criterion for Asperger’s, children with Asperger’s Disorder frequently have motor skill delays and may appear clumsy or awkward.”

Two years ago, as I started 2020, my wife encouraged me to start a blog. Knowing it would be therapeutic as we navigated raising twins on the spectrum, she gave me permission to share with authenticity, only ever monitoring what I shared on our family’s behalf if she worried it would put the twins at any risk, and so I wrote what I saw each day. 

Some blogs resonated for others enough that they reached out to say they were seeing it in their children, and it even helped with scheduling an evaluation or two that did in fact find autism, and those children are getting early intervention that I know will be life changing for their family. 

Some blogs helped me share through my hurt, sobbing as I wrote them, and then receiving love and support from others as I needed it.

Some blogs were funny, as even I laughed at what felt unbelievable as it happened (particularly through the ridiculousness of COVID).

And some blogs shared too much, altering others’ opinions of our family, our parenting, and our vulnerability in sharing our life so publicly. 

In 2021, although I was writing many late nights, for hours when heaven knows I should have been sleeping because I haven’t gotten even 6 hours of sleep in the last six years, I wasn’t sharing at all because I was stuck.. Stuck in a writer’s block where I didn’t know what to say or how to say it about everything we were going through. 

I was stuck on what I thought I knew would change others’ opinions of me, and my parenting, in a way that I wasn’t ready for.

I was stuck because anytime you label something, regardless of how the boys diagnosis didn’t change who they are as humans, but did give us a map to understand how they learned, and how we could support them through that learning, it did and continues to change others opinions of the humans they are when they hear they are autistic. 

I was stuck because I had felt like I had spent my whole life trying to be what everyone else needed me to be, and was facing an authenticity that I wasn’t sure I knew how to defend yet. This wasn’t like coming out of a closet refusing to live a life without the love I wanted and felt I deserved, which as everyone in the LGBTQ community can understand in one form or another.

I was stuck because I knew that what I was seeing in our daughter, who is the most beautiful combination of our boys, was a mirror that I recognized with such clarity I could no longer ignore it. If anything, it was finally a reflection that seemed more recognizable than it had in a very long time.

And so as I began to work to have Alex evaluated, and researched the ways autism (which now includes those high function once known as aspergers) in girls, I felt a protective-writers block that told me this story wasn’t ready to be shared, as the world today tends to refuse to listen without those official labels we all give far too much weight to, and what I was seeing in our daughter, I knew too well in myself.

But today, as the ink is dry on the paper, and the label is officially diagnosed, my fingers find the keyboard again, and it’s like the quicksand has disappeared where I am no longer stuck.

2022 for this blog will share the stories about
what Autism has taught me, and what I hope to teach Autism. 

Although Alex’s diagnosis of Category 1 (Aspergers), like Jack’s, would have typically gone unnoticed, we fought diligently for our girl’s magic to be seen in order to give her the best chance at learning any and all strategies in early intervention that can give her has much success navigating what society requires of her in this lifetime. And although I went through the same evaluation, to where it was found (somewhat controversially), that I am not on the spectrum as I am far to engaging (able to connect) to be there, I’m hoping what strategies I’ve learned over the last three decades may help others in ways that aren’t academically being taught. 

So if you’re along for a read or two this year, thank you. Thank you for the time you take to be with us as I share our adventures with autism.

And if what I have shared with you isn’t something you want to continue to read, no offense taken. I thank you in advance for taking any judgment or negativity you have elsewhere, as this space is only for those along for the ride who choose to spread love, support, and an openness to learn. The only way we can change hearts and minds in this lifetime is to share what we know, and this is simply what I know. 

As always, to the others on this spectrum of a journey… we see you, and you are not alone. Xo