9 Things You Should Know About My Son With Autism

I recently read, and loved, two articles:

Both writers (who are both moms to boys with autism) touch on some really good stuff, the biggest overlapping idea being this one: every person with autism, and every parent (or grandparent, caretaker, sibling, or friend or family member) of a person with autism, is unique.  You know, kind of the way us “regular” people are unique.  So while I highly recommend both of these articles to, well, basically everyone, there are still more things that I’d like our own friends and family to know about MY son with autism.pic13

The idea to write this post popped into my head when my uncle came to have lunch with us, and it was the first time that he’d seen Alex since he was a baby.  When Alex was off jumping in the other room (a LOT of jumping goes on in our house), my uncle asked for a short synopsis of what he should know about interacting with Alex before he came back into the room.  It was such a simple question,  but one that no one had thought to ask me yet!  I gave my uncle a few points that I thought were big.  He listened, and after giving Alex his space for 15 minutes or so, Alex was smiling and even making some eye contact with this guy he had no recollection of meeting before.  A HUGE thing for our son who often regresses in many ways when meeting new people, and shies away from eye contact even with closer friends and family members.  A 30-second conversation had made such a noticeable difference in how Alex behaved with someone who was essentially a stranger to him.

It did occur to me that people might not want to even ask the question that my uncle did for fear of starting an awkward conversation.  So, this is a quasi-brief summary of what I would like other people to know about Alex- and maybe- hopefully- there will be some pointers in here that other parents of children with autism, or other special needs, can borrow for their own friends and family, too:

  1. First and foremost, don’t feel like you can’t ask questions!  So little is known about autism in general that there honestly are no ASD “experts.”  Even people who have studied it for years and who know many individuals with autism only know a limited amount and would need to ask the same questions when meeting someone new who has autism.  It doesn’t need to be an awkward conversation, either…like most parents, my husband and I can’t get enough of talking about our kids (I’m sure to an annoying degree to most..sorry not sorry).  Just because one of our children happens to have autism doesn’t mean we enjoy talking about him any less.  Honestly, we are usually grateful for the opportunity to explain a little bit about him and what makes him tick.pic4
  2. Get most of your question-asking out of the way with my husband and me, not with our son.  Nothing shuts Alex down faster than a bunch of rapid-fire questions (How old are you?  What does your shirt say?  How do you like being a big brother? When’s the last time you took a poop?).  This may be a typical way of interacting with a 2-year-old but Alex is not your typical kid (and I’m not really sure how many toddlers actually enjoy all of these questions, if I’m being totally honest).  Comments as opposed to questions are the best way to make Alex feel comfortable and to encourage a reciprocal interaction (I hear you’re turning 3!  I like your dinosaur shirt!  I bet you’re a great big brother!  I don’t really care when you last pooped!).
  3. Autism is not a 4-letter word.  You can and should say it to me and in front of my kid.  I’ve read many stories by adults (mostly women) who didn’t receive diagnoses until they hit their 30s or 40s, and the common sentiment is that they feel relieved to have an explanation for why they think and feel the way they do.  I would much rather my son understand more about himself and why he might do things differently from other kids from the get-go, instead of wondering how to broach the topic for the first time after he has had to deal with extreme anxiety for lack of understanding in the meantime.
  4. Interact more, talk less.  This may sound like an oxymoron but I promise it isn’t.  People on the spectrum often have communication difficulties, but these stem from the impairments in social interactions that are at ASD’s core.  Focusing first on engaging in positive, reciprocal interactions that don’t involve a ton of language can actually help improve use of speech in the long run.  As soon as we started consciously doing these two things, we saw noticeably positive changes in Alex’s mood, and the regression of his language finally started to slow down and make a gradual U-turn.  Whereas the majority of children are able to learn language from regular conversation, many late-talking children (particularly those with ASD) need to have clear, concise statements that are repeated many times and with visual supports (this is a huge piece in interacting effectively with Alex and other kids with language delays who are on the spectrum, so I’m hoping to write a more thorough post focusing on this in the near future).  The biggest and most immediate change, though, was in Alex’s responses to us.  He had been withdrawing more and more since around his 2nd birthday, when his speech delay had started to grow more obvious, but when we started to focus on having fun with him again and really enjoying our time together instead of talking “at” him constantly to try to improve his language skills, Alex started to approach us more for playful interactions.  Best of all, the growing tension in our house faded and we started laughing with our son again.pic3
  5. He understands a hell of a lot more than he can say.  We are trying as a family not to talk about certain heavy subjects in front of him– Alex may not look like he’s listening, but his mood is clearly affected when he overhears anyone talking about him as if he isn’t there.  Chatting about how stressed we are or about how hard it is getting the right services in place some topics we are trying to avoid discussing in front of him (though we recognize how unrealistic this sometimes is seeing as it’s a pretty hot topic in our house right now!).
  6. You don’t need to look away when he does something weird or gross. Kids do weird and gross things. This is not specific to autism. When a toddler starts licking the windows or suddenly farts loudly and unapologetically or pronounces the word fish as bitch –LAUGH!  Autism does not make these things not funny.


    See? Funny!

  7. Don’t take a lack of eye contact to mean he doesn’t like you.  Eye contact is overwhelming for most kids on the spectrum, but it doesn’t mean they aren’t interested in you. I explained this to my uncle in a way that might sound weird or wrong but it’s the best analogy I could come up with: like you would do with a shy dog, let Alex come to you when you first meet him.  A quick and friendly, “Hi, Alex!” with a 2-second glance in his direction, followed by silence and chatting up his mommy or holding his baby sister will help make him more comfortable and give him the chance to move at his own pace.
  8. He’s smart.  Autism is characterized by social and communication deficits, along with odd or repetitive behaviors.  These deficits can obviously have a negative impact on learning in certain areas, particularly any that involve imitation of others or following verbal directions.  However, many children with ASD, Alex included, are also highly visual learners.  Alex is a wonderful artist (though he does occasionally like to stop and eat the paint while he works).  When he “plays” the piano he often comes up with melodies that actually sound good (as opposed to your typical 2-year-old banging).  Alex can stack blocks as easily as any other kid his age.  As I’ve mentioned in a previous post, Alex was able to learn his alphabet without us teaching it to him because of a TV show that uses visuals.  And while Alex’s use of functional speech is extremely limited, his memory for certain words honestly freaks me out sometimes.  This kid will go all day without saying one comprehensible word and then will randomly point to my knuckle and, clear as day, announce “knuckle,” like it’s no big deal.
  9. Accept him for who he is and just have fun with him!  Alex doesn’t want to be pitied; he wants to play outside and ride his tricycle and wake the baby up too many times by purposefully jumping next to her crib.  He’s got a different way of communicating and gets overwhelmed by a lot of noise sometimes but for the most part he is just your typical charming, stubborn, and inquisitive little boy.  pic2

For those feeling like there should be a 10th item, sorry…I guess this is my way of being original?

As with any of my posts, please feel free to share!

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Education Laws and Other Light Reading

At the very top of my list of things to do now that we’re in New York, immediately followed by house-hunting and catching up on my consumption of everything bagels, is getting services in place for Alex.  Unfortunately for us, Alex has just reached the age where exactly none of the steps for us to take are clear cut.

Prior to referring Alex for an evaluation a few months ago, I had almost zero knowledge about the early intervention (EI) program or the transition process going from EI to preschool special education services.  I’ve worked in elementary schools for close to 4 years (1 year internship in NY; 2 1/2 years in Wisconsin) so am pretty familiar with the transition between preschool and kindergarten (which isn’t NEARLY as murky), but this is 100% different and 100% more confusing.  There aren’t a huge number of resources where we live, and with a grand total of only THREE school psychologists (!) working for the school district we’ve relocated to, there aren’t too many people to go to for help with deciphering education laws.  I can definitely see where we could potentially go without any services for Alex for months if we didn’t know how to advocate for him.

Alex is finally starting to take an interest in Baby Clara!

Alex is finally starting to take an interest in Baby Clara!

So, in typical nut-job/control-freak fashion, I have most recently been spending the hours of  10pm to 2am pouring over state and federal education government documents with way-too-tiny print and way too many references to things I don’t understand (hmm, wonder if this is why I’ve been having so many grad school flashbacks lately….).  With every question I get answered, at least three new questions pop up, and I’m pretty sure I’ve somehow opened the same document from at least three different links on at least three different websites; however, I feel like I might finally be getting somewhere.  Maybe.

In an attempt to organize my thoughts and hopefully make my insane amount of research beneficial to at least one person outside my immediate family, I thought I’d try to summarize and maybe narrow down some of the more useful information I’ve come across.  I am not going to attempt to accurately reference each individual law or piece of legislation or whatever else because I am almost guaranteed to screw it up…please use the links provided if you want to know the specifics.

  • The Department of Health (DOH) under the Early Intervention program (or Part C of the IDEA, or Individuals with Disabilities Education Act) provides services to children with disabilities, birth to 2.  The State Education Department (SED) is required to provide services to preschool children with disabilities, ages 3 to 5 (Part B). (I’m pulling this info from the NYS Education website-http://www.p12.nysed.gov/specialed/publications/preschool/transitionguide/document.htm– but this is the same for all of the United States).  Neither of these programs should be confused with other independent, private or community services, which don’t have the same age guidelines or restrictions but also aren’t provided by the state (i.e., these are the services that can cost a LOT of money).
  • The biggest difference between the EI and preschool programs are the types of services available through each.  The EI program is family-centered; i.e., the child’s family is supposed to lead the way in regards to goal-planning, and is required to be involved in the decision-making process as well as in the implementation of services.  Therapy is often done right at home and can be utilized to work on any number of skills, whether or not they directly relate to education.  For instance, one of the goals we came up with for Alex when we were putting together his IFSP (Individual Family Service Plan) was for him to get better quality sleep (what I wouldn’t give to have a whole team of people trying to improve MY quality of sleep).  Goals and services can also target things like interactions with parents, getting dressed, playing appropriately with toys, or eating (to name a few).hair
  • Preschool special education services, on the other hand, have to target goals related specifically to success in the educational environment.  These goals are documented on an IEP (Individualized Education Program), which is the same document that will follow the child until they turn 21 or are no longer eligible for special  education services (with revisions occurring at least once per year).  To put it simply, preschool services are a lot more limited in what they can offer than Early Intervention services.  If your child is able to “hold it together” in terms of behavior at preschool but falls apart the minute they get home, special education can’t touch those problem behaviors because they aren’t directly impacting educational performance.

    And here's Baby Clara, starting to take an interest in Big Brother Alex's hair

    And here’s Baby Clara, starting to take an interest in Big Brother Alex’s hair

  • There also needs to be a big enough gap between your child’s current performance and that of their “typical” peers in order for them to qualify for special education services/an IEP.  Whereas EI services can sometimes be given as preventative measures in the case where your child has a condition that is known to cause delays (e.g., autism), special education services at the preschool level and beyond can only be given after a significant delay already exists (and yes, in case you were wondering or are confused, this is totally counter-intuitive and oftentimes just plain sucks).
  • There is a several-month-long transition period between EI services and preschool SPED services (the specifics in terms of dates and transition procedures vary from state to state).  By referring Alex for Early Intervention services when he was already 2 years, 6 mos., and then moving him to another state at 2 years, 8 mos., we have managed to turn his transition into basically the most confusing situation ever.  The document that’s been the most helpful (to me, at least) in explaining what the hell is going on and what our options might be is this one: http://www.parentcenterhub.org/wp-content/uploads/repo_items/legacy/partc/8-trainerguide.pdf  It’s a training curriculum- about a bajillion pages long but fairly easy to understand- about Part C of the IDEA and it’s produced by the National Dissemination Center for Children with Disabilities.hair
  • Depending on the state you’re in, there may be some overlap in terms of when a child is eligible for EI services and preschool SPED services (but they can’t receive both at the same time).  Some states offer the option of keeping a child in EI services a little bit past their 3rd birthday (called a Part C extension), and you might also be able to start preschool services before your child’s 3rd birthday.  The timelines depend on the date when your child is born, as well as specific start dates for preschool special education programs.  There are about a million other ifs, ands, and buts in regards to these scenarios, and they all vary by state.  Long story short?  Do your homework.
  • Regardless of your child’s age or the state you are in, there are a few things to pay attention to when you’re referring him or her for an evaluation.  Most importantly, WRITE THINGS DOWN!!!  Names of people you’ve spoken with, dates and methods of contact, even failed attempts at reaching someone in the school office.  I can safely say from my own experience as a school psychologist that when a parent can readily reference when they’ve spoken with various people or signed documents, school staff will take note of this and work that much harder to stay on top of things with that parent’s child.
  • The other thing that I would highly recommend doing is not only documenting the date that you signed consent for the evaluation (which sets the rest of the timeline in motion, including the eventual date when your child will begin receiving services if he or she qualifies for them), but also making sure that you get the opportunity to sign for consent as soon as possible.  In the district where I worked in Wisconsin, there was a 15 business day timeline from the date of a referral for evaluation until the date that the consent form had to go out to the parents; however, in New York, there is no timeline (rather the consent form just needs to go out “immediately” after the referral is received).  Don’t let the EI or school staff sit on this one.  Now I’m not saying to become a huge pain in their ass…but if you do, I won’t judge.
  • If you want to do your own research on IDEA, here’s the link to the IDEA information page on the U.S. Department of Education website (www.ed.gov): http://www.parentcenterhub.org/repository/idea/ You can find the exact text of the IDEA as well as summaries and way more resources in understanding it than you could possibly finish reading.  And finally, if you want to find out how your own state interprets the IDEA and what additional laws you’ll need to be aware of, google your state’s education government page and use its search bar to look for special education.
Alex decided this was a safer activity.

Alex decided this was a safer activity.

As for us, I have not finished making phone calls and honestly do not know when services will be starting, or where, or if a new evaluation will be done right away (as opposed to using the one recently completed in WI), and whether Alex will be receiving EI services as opposed to preschool services.  This whole process has been a lesson in learning to let go and go with the flow (HA!).  Still, the more I read and understand the better I feel about being able to advocate for Alex and to make sure he gets all of the support he needs and deserves.

I would love to hear about other parents’ experiences with the referral process, or to talk to anyone thinking about starting this whole thing themselves!  Has anyone found any other resources for helping understand what steps to take?  This whole ordeal has been pretty overwhelming and I know having other people to bounce ideas off of can only help.

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Transitions are difficult for the majority of toddlers, let alone BIG changes like adding a new baby to the family, travelling for long periods of time, or moving to a new house.   So when we were getting ready for Baby Clara to make her debut this past spring, I became increasingly worried about Alex, who had been the center of our attention for the first two years of his life.  His daycare provider (who only watched 2 or 3 other children at her home, so it was a perfect setting for a “shy” boy like Alex) had mentioned to my husband that Alex seemed to have more difficulty with transitions than the other kids she watched.  It didn’t stand out to me too much at the time since 2-3 children wasn’t exactly a good-sized control group, but I did wonder if Alex would have more trouble with losing his Only Child status than your average 2-year-old.  Still, I don’t think anyone in my family (even me, a known catastrophizer/Drama Queen)  was prepared for the change that we saw take place in Alex after his sister was born.

Back when "baby in mommy's tummy" was still an abstract concept

Back when “baby in mommy’s tummy” was still an abstract concept

I think Alex had less difficulty dealing with Mommy being away at the hospital for a couple of nights than he did with the drastic change in routine that occurred when I returned home.  One of the first nights we spent at home after Clara was born, Alex woke up in the middle of the night, sobbing inconsolably; I held him in my lap in the dark hallway and he wrapped his arms around me tighter than I would have thought possible.  It took over an hour to get him to calm down enough to go back to sleep, still wrapped up in my arms and whimpering.

Alex’s behavior changed in a lot of ways that I was sort of expecting, too; he started pushing his boundaries a lot more and throwing tantrums, particularly when I was home alone with him and his sister.  I had even been prepared for some minor regression like I had read about on online forums, like crying like a baby for attention or suddenly deciding he wanted a pacifier (typically the one that was already in Baby Clara’s mouth).  But what happened was a lot more drastic then those more typical changes: Alex’s language, which was already quite delayed, all but screeched to a halt.  He refused to make eye contact with anyone who was holding the baby and suddenly couldn’t be in another room without a parent.  It took almost 3 months before I started to realize that this probably wasn’t normal adjusting behavior.

Crap, you mean she's staying?!?

Crap, you mean she’s staying?!?

We slowly began to put a new routine into place, putting extra emphasis on a consistent bedtime routine, and Alex gradually grew more comfortable with Clara being in the same room as him (now he will even pat Clara on the head or pet her belly to say goodnight).  Alex slowly started to use the speech that he seemed to have forgotten, but making his way back to where he had been before his sister was born was painfully slow.  It took about 3 months before Alex’s willingness to communicate got back to where it had been, and his social interactions (e.g., eye contact with parents; playing interactive games with Nana and Papa) are still recovering.  

One of the characteristics commonly (but not always) seen in people with Autism Spectrum Disorder is “an insistence on sameness” and/or “inflexible adherence to routines” (including difficulties with transitions).   (Diagnostic criteria comes from the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition; see https://www.autismspeaks.org/what-autism/diagnosis/dsm-5-diagnostic-criteria for full list of criteria)  There are plenty of theories as to why this is but I feel like common sense kind of prevails here: if someone is a visual learner and doesn’t understand abstract language- i.e., if anything someone is talking about is in the past, future, or not right in front of you, it’s basically meaningless- then having any deviation from your norm would be a major curve ball.  If I were suddenly transported to Japan, where the only sentence I would understand would be the ever-helpful watashi wa fune ni yota (probably spelled horribly wrong and roughly translating to I am seasick), it would at least be comforting to know that I could depend on my home to be the same when I got there and for happy hour to be at 5:00.  If suddenly these things changed and I could neither understand what happened nor ask anyone for help or to explain, I’d be upset too (and also pretty pissed that someone stole my wine).

So anyway, as it turns out, a new baby in the house was even more of a game-changer then we had planned on.  I guess it worked out in that it probably got us to pursue an evaluation sooner than we might have otherwise, but things in our house have definitely been calmer. I had been planning on returning to working, probably part-time, in the upcoming fall or winter, but with Alex in need of multiple therapies and my husband already working full-time it became apparent that there weren’t enough hours in the day for me to work and take Alex to therapy sessions and spend time with my baby daughter and husband (let alone sleep or eat or, you know, maybe shower).  The closest family to us was my brother, Uncle Peter, who lived 2.5 hours away.  My husband and I went into action (read: panic) mode and I did my best to watch both kids while Zachary looked for jobs closer to family.

Fast-forward about a month, Zach was offered the PERFECT music teaching gig in the town where I grew up and where my parents and many friends still live.  What was supposed to be a 2-week trip to visit my parents turned into a permanent stay for the kids and me, while Zach drove back to our house alone to pack things up.  All in all, we couldn’t believe how lucky we were for that teaching job to have opened up when it did and for Zach to have landed it so quickly.  The problem with this, in case it isn’t obvious, is the second massive transition Alex will now be undergoing in a matter of a few months.

Cutting to the chase here, we need some help!  How do you possibly explain to any toddler, let alone one with very limited verbal skills and with low tolerance for change, that he won’t be going back to his old bedroom?  And what about our new house (when we find one…don’t get me started on that)…I’m having trouble picturing him falling asleep in a new, empty house unless tranq darts are involved.  On our 2-day drive to my parents’ house, Alex and Baby Clara were surprisingly content, and Alex even had fun playing some not-so-original speech games I made up along the way (i.e., yelling Truck! Trees! Big Mountain! as we passed them).  It was only when it started to get dark and Alex realized he still wasn’t starting his bedtime routine that he very quickly fell apart.  Alex was hysterical and literally grabbed onto the hotel room doorway and wouldn’t let go, and Zach and I were starting to think we weren’t going to get any sleep at all when I decided to try showing Alex around the hotel room.  We turned the lights back on and I carried him around the room, labeling random objects along the way, and he abruptly stopped crying.  When I told him first sleep, then Nana and Papa’s house, he actually smiled.  By the time Zach had taken Alex out for a short drive and showed him the front of the hotel that we were staying in, Alex was fully content and fell asleep in the hotel room bed without issue.

So clearly visuals and explaining in simple terms are helpful, and I know professionals recommend doing visual schedules or social stories to help with any sort of new situation.  But I’ve never put together either of those things and honestly don’t know where to start, especially with such a novel topic like moving halfway across the country.  I would seriously love any ideas, guys!  Any other autism parents out there who’ve gone through anything similar?  Did you try anything that seemed to help?  Or that failed miserably?  I’m especially open to ideas that don’t take 8901723 hours to make and that an energetic toddler can’t rip to pieces instantly.

Since getting to my parents’ house, Alex took a few steps back again in terms of his social communication.  I know my parents weren’t ready for how bad he seemed when we first arrived (the last time they had seen him was the week after Clara was born).  Five days later, Alex is almost back to where he was before we left Wisconsin; however, visits with friends have also resulted in temporary lapses (as well as an increase in stimming and repetitive behaviors).  In my picture perfect world, I was going to be taking road trips without the kids to visit friends overnight and catching up on all the kid-inappropriate movies I could squeeze into one night; back in reality, I realize that this is going to take some time (or maybe a lot of time).

And yes, I know that life is full of surprises and that we can’t control every little thing that happens to our children (I wish!).  I know that there will be constant change and unexpected events that are bound to throw them off balance.  Still, I feel like it’s my job as Mommy to give my kids all the tools they need to adapt to changes when they’re still young and (hopefully) still blissfully unaware of how hard life can be sometimes.  So I want to thank all of my friends for putting up with me cancelling on plans and missing phone calls and for basically being a crappy friend while trying to be a good mom.  And to all of you who keep re-making plans and calling me anyway, I love you and am so damn lucky to have you.

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All the Things I Missed

Alex @ 2 1/2 months. Still my little snuggle bug:)

Alex @ 2 1/2 months. Still my little snuggle bug:)

How did I miss it?

Such is the question that has been playing over and over in my mind like a bad movie.  My loving, sweet, affectionate 2-year-old boy, whom I have loved and adored as much as any mommy possibly could, has autism.  And, somehow, up until recently I had completely missed it.  

Everyone keeps telling me not to beat myself up, that he is still so young, that parents often don’t seek treatment until much later.  I can hardly imagine that any of this would be very comforting under most circumstances, but in my case it feels simply devastating.  I have been a school psychologist for the past few years.  A big part of my job has been to review criteria checklists, including that for educational autism, with a team, often explaining each item to other team members and parents.  I am often responsible for “educating” parents on what the criteria actually means, and on more than one occasion have had the excruciating experience of being the first person to say the word “autism” aloud in reference to their baby.  

The first time Alex heard Daddy's electric razor he nearly pooped his pants (on second thought, he probably did)

The first time Alex heard Daddy’s electric razor he nearly pooped his pants (on second thought, he probably did)

During my year “off” between college and graduate school, I worked for a daycare center in the toddler room and cared for two 2-year-old boys with autism on a daily basis.  I remember constantly wondering to myself about one of the boys’ parents; they were both special education teachers, yet seemed to have no idea that their completely nonverbal son was severely delayed.  How could they possibly not see it? I wondered.  While the boy’s peers were stringing 2- and 3-word sentences together, sometimes more, this boy (let’s call him Jason) would wander aimlessly around the room while whining, flapping his hands, and spinning in circles.  He fought off any form of physical contact from anyone, including his parents.  Jason would often bump into peers, looking past them as if they were not there or were simply obstacles in his way.  Yet it took a full year of my working at the center, until Jason was 3 ½ years old and still not saying a word aside from the occasional maaa (which stood for “mom,” “milk,” and various seemingly random items), before his parents agreed to invite a school psychologist to observe him and conduct an evaluation.  Many tears from both parents followed as they slowly began to realize and accept what was happening with their only child.  My heart broke for them, though I remained baffled that they seemed so shocked.  

And now, seven years later, I find myself in nearly the exact same position.  While my son, Alex, does not present as severely as Jason did, now that I know what is happening the truth seems all but glaring.  I can only be thankful that I was willing to finally see what was right in front of me, rather than staying in denial and missing out on getting help.  

Baby Blues (Alex @ 4 mos.)

Baby Blues (Alex @ 4 mos.)

For any parents out there who may be starting to ask the same questions about their own children, I thought I’d compile a list of some of the things that didn’t stand out to us about Alex until just recently, or that we brushed off as “just a phase.”  Plenty of the things on this list would NOT be indicative of Autism Spectrum Disorder on their own, but when put together become some pretty big red flags.  

  • More than anything, good eye contact was the thing that I completely missed.  Being an educator, I knew that looking for eye contact along with social smiles were the first things doctors typically check for when screening for ASD.  So when Alex began making eye contact with us and smiling almost right away, I immediately checked “autism” off of that list that parents make up in their heads of everything that could possibly go wrong with their children, and didn’t give it another thought for the next two years.  HOWEVER, when I finally began to reconsider the possibility when Alex was 2 ½ , I began scanning through old photos and videos and comparing them with some videos I found on YouTube comparing development of typical kids versus those with autism (this was a really helpful one: https://www.youtube.com/watch?v=YtvP5A5OHpU )  I soon realized that, while Alex was looking into our eyes, he was just as interested by all of the other things going on around him and didn’t lock eyes with us frequently the way his baby sister now does.  Also, Alex would smile at us, but he would smile almost as frequently at objects and movement as he did at people.  Around the time that he turned 2 years old (i.e. a few months prior to his baby sister’s birth date), I noticed Alex’s eye contact becoming more and more rare.  Today he still makes eye contact but only on his own terms: if we try to look at him when he is looking away, he will do everything in his power to not make eye contact (twisting his head away or even rolling his eyes up or to the side).  Eye contact is most frequent when we are snuggling or doing anything else physical (e.g., dancing or playing chase games).  

Alex with his daddy @ 2 1/2 mos

  • This was another big one: not looking at us when his name was/is called.  I remember Alex’s pediatrician asking me if he was doing this at around 8 or 9 mos., and I said no but that my husband and I were really bad about using his actual name, instead alternating between pumpkinpeanut, and nugget (clearly I was very hungry when Alex was a baby).  The doctor didn’t seem worried, so I wasn’t worried either.  Fast-forward to now, when Alex still doesn’t look at us 90% of the time when we say Alex: we considered hearing problems and attention issues, but it took almost 2.5 years before I considered the possibility of ASD.

    This picture has extremely little to do with this post, but I love it anyway...I had asked Alex, "Show me your haircut!" so that's what he did:)

    This picture has extremely little to do with this post, but I love it anyway…I had asked Alex, “Show me your haircut!” so that’s what he did:)

  • Lack of following directions.  When Alex was 14-15 mos. old, he would follow a few 1-step directions (go see dadathrow ball); he quickly stopped doing this though and we thought for sure it had to be due to stubbornness(which would not be a surprise given family history).  A clue that something else might be going on was that Alex would not follow directions even when they were something that he would clearly want to be doing.
  • Crappy sleep.  This one can obviously occur in plenty of kids without autism, and would never be used as a way of diagnosing on its own.  I have always had such bad periods of insomnia that Alex’s habits of waking up in the middle of the night and frequently getting up for the day at 2 or 3 am didn’t strike me as anything that far out of the ordinary.  
  • Though he could only say maybe 10 words at the time, one day Alex just started spouting out the letters of the alphabet while pointing to them on my laptop (he was 22 mos. old).  He had apparently learned them from watching Super Why without us even trying to teach him.  Kids with good visual memories are often able to do this, but being so fluent with letters while struggling with functional speech turned out to be another red flag.
  • Playing with toys or household objects in “odd” or unimaginative ways; for example, Alex likes spinning wheels on cars or rolling them back and forth over and over again in front of his eyes (making quick, repetitive movements in front of his eyes is another one).  I had noticed a little bit of hand-flapping–one of the more commonly recognized symptoms of ASD– but since it wasn’t nearly to the extent that I had seen in other autistic children, I just chalked it up to a way of showing excitement.
  • At 2.5 years, Alex had developed a vocabulary of at least 200 words (I actually wrote down every word I could think of and counted); three months later I would guess that this number has doubled.  However, Alex very rarely used these words to communicate in a functional way.  Alex rarely answers questions, even when he knows the answer (e.g., when asking what’s that? about something in a book that he’s labeled on his own many times).
  • Our at-home daycare provider once mentioned to my husband that Alex had more difficulty transitioning between activities more than the other children she watched; we didn’t notice this for a long time because a) we kept a pretty consistent routine at home anyway, and b) we didn’t have any other children to compare Alex to (clearly this changed when Baby Clara was born…talk about your changes in routine).
  • Alex loves lining up toys.  We thought this was adorable, albeit a little odd, and it didn’t stand out to us at all until the service coordinator started asking questions during our evaluation.

I’m hoping that my posts will take a more optimistic turn soon, but thought this one was especially important.  If I can offer any advice at all to other parents, it would be to make your doctor hear you when you have a concern, even if it seems like a mild one.  And if you get an opinion from one professional and that opinion isn’t sitting right with you, get a second opinion.  With early intervention being as crucial as it is, I wish I had done these things sooner, but I am also SO thankful that I bit the bullet when I did.


Alex taking a poop break while lining up some jars of paint. #multitasking

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