According to the latest findings from the CDC, 1 in 50 children are now diagnosed as being on the autism spectrum. My friend Jen (mamapink) has a super sharp 3-year-old daughter Ayla (pronounced eye-lah) who was diagnosed with PDD-NOS (pervasive developmental disorder not otherwise specified) on the autism spectrum last year, so I asked her to share how she recognized the signs, pursued early intervention services, and how far Ayla has come today. She said it felt really good to write it all out and provided such in-depth answers to the interview, we’ve turned it into a 5-part series that takes you through what it’s like for her to raise a child with autism.

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Can you tell us a little bit about when you first thought your daughter may be neuro-atypical?

I think I’ve always had a feeling that Ayla might have been different since she was born. She was hypersensitive to almost every type of stimulus you can think of when she was a newborn. She was labeled “the cryer” from the nurses at the hospital. At first it didn’t make sense to me (I thought “don’t all newborns cry?”) but now it makes perfect sense. My husband and I always felt and still do feel now like we’re “walking on eggshells” around her, constantly trying not to set her off. As a newborn she was very sensitive to noise, unlike other newborns that would sleep through loud TV, vacuums, airplanes, etc. We would literally tippy-toe our way while holding our breaths in order to not disturb her sleep. But on the other hand, she was soothed by very loud white noises such as the hair dryer on the highest setting placed right by her ear or the white noise app on my phone on the highest volume, again, placed right by her ear. At first we thought it was colic. Then we found out she had GERD (acid reflux) so we attributed her sensitivity and crankiness to that. But then even after 3 months went by and 6 months went by and nothing had changed while she was under medication for her GERD, I started to revisit my thoughts that perhaps she had autism.

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I’ve always had a feeling she was very different, but she didn’t show the classic signs of autism early on so I always sort of brushed it off. She had good eye contact with me, she had an extreme attachment towards me (still does), she didn’t flap or rock, etc and these signs were going against everything that I’d read about autism. However when I look back, I can see that there were subtle signs along the way. She had difficulty sitting up (wobbly and weak core), she absolutely hated tummy time with a passion, she was extremely fixated with her right hand when she had finally discovered it, she would twist and twirl an object whenever she got it in her hands, she never jumped at an age when babies love using the jumperoo, and she rotated her feet/ankles all the time for a long phase. Granted all of those were phases, but those are things that pointed to autism in subtle ways. As she reached one, I noticed she couldn’t grab finger food or objects with her two fingers as well as a one year old should, she couldn’t/wouldn’t point to things, and instead of trying to speak she always grunted. I already knew she was delayed in several areas, but my attitude was always “wait and see.”

At around 15-18 months she stopped saying “mom” in Korean, a word she had already known for a few months, which was a sign of regression. That’s when I decided to seek Early Intervention at around 16-17 months and services actually started when she was 18 months. We tried it for a total of 8 sessions (one calendar month), but I decided to end it because I felt it was doing more harm than good. My daughter cried hysterically for the entire session each of those 8 sessions, and I noticed she had “side effects” from each visit. She got sick (ear infections) more often and ended up becoming much more clingy and sensitive for the consecutive days after each visit. That was a decision I now regret terribly.

Did she have any other specific behaviors that you were concerned with, or fail to reach certain age-appropriate milestones?

As mentioned above, besides the little quirks and phases that she went through, her behaviors weren’t too alarming. Her sensory processing issues were there, but I didn’t recognize them as part of characteristics related to autism at the time. It did raise a little red flag in my head, but it wasn’t enough for me to conclude that she had autism. She was delayed in most major milestones, but none of the delays were a cause for concern according to our pediatrician.

I think some of the major behavior differences that we had with her compared to other kids her age were: she was swaddled until she was 9 months old and she used the swing until she was 9 months old. We thought the swing was going to break! She was so big and heavy by then that the swing barely swung! But we had to get our sleep! All of us! She also didn’t roll over back and forth until she was 9 months old. She almost entirely skipped crawling. I think she only crawled for a couple of weeks before she started cruising at around 11 months. I had to carry her everywhere, all day long, even while inside the house and it was extremely draining. She was also so clingy that she wouldn’t play on her own at all.

Other signs that were/are there include:

S P E E C H

– Speech regression – Her speech regressed a bit at one point. She was speaking a few words, such as “mom” in Korean but stopped saying it completely along with other words that she already knew.
– Repetitive Speech – Ayla’s repetitive speech was present ever since she started speaking words and phrases. For example, when she learned the word “dog” and she happened to see a dog outside, she would incessantly repeat the word “dog” over and over and over again. While at home we are often able to redirect Ayla’s repetitive speech, however when we’re outside it is more of a challenge. We get a lot of weird looks and laughs about her repetitive speech in public. I am appalled at how many adults are insensitive enough to laugh at a small child with a speech impediment.
– Mixing Pronouns – A lot of people with autism mix pronouns. She uses the third person pronoun (you & yours) instead of the first person pronoun (I, me, mine, my). She says, “You open the door” when she means “I want to open the door,” or “you like the candy?” in a question format when she wants to say “I like the candy.”
– Rote learning – She mastered the alphabet, colors, shapes, names of animals, and numbers earlier than most kids her age. Although she had quite a vocabulary, she was able to neither string them together nor use them effectively to communicate.
– Lack of Conversational Skills – There was a lack of back and forth conversations by the time she was able to speak. Ayla would either repeat the questions that were asked (echolalic) and not answer them or just state things on her own (“that’s a dog”).
– Repetitive Scripted scenarios/phrases/sentences – Ayla often behaves in scripted ways. There is a lack of improvisation. When asked “how old are you?” she knows how to answer “I am 3 years old,” but when asked “how old were you last year?” she wouldn’t be able to answer “2.” She often recites sentences or phrases from a movie or a book, just out of the blue, sometimes in her sleep in the middle of the night. For example, one of her favorite movies is Disney’s Up. She’s watched it numerous times already and always recites a particular scene over and over again where Carl’s wife Ellie sneaks into his room when they were still young and they’re talking to each other underneath a makeshift tent in his room with a flashlight on. Ellie says “I am about to let you see something I have never shown to another human being. Ever! In my life! You will have to swear you will not tell anyone! Cross your heart. Do it!” Obviously she cannot pronounce every single word, but she mimics those sentences and emphasizes the words just how Ellie did in the movie, so it was easy for us to pick up the fact that she was reciting lines from the movie. For example, she would mumble the first sentence and emphasize “Ever! In my life!” then mumble again and say “…not tell anyone! Cross your heart. Do it!”

P H Y S I C A L

– Flapping – She did have a very short phase where she flapped her arms a little bit, but it went away and it never came back. Flapping (or stimming) is a common characteristic of many children with autism. But she did have a long phase where she was constantly rolling/rotating her feet and curling her toes.
– Shaking her head – I’m not sure if this is a sign of autism or if it’s just a part of sensory processing disorder, but she often shook her head side to side, especially when she was tired.
– Sitting crooked – I also read somewhere online, in one of my numerous researches about autism, that if your baby constantly sits crooked (leaning on one side of her hip or tilted) while on a highchair that it was a sign of autism. Ayla used to often sit crooked while on the highchair.
– Low Muscle Tone – She sits in a W where her legs form the shape of the letter W when she’s sitting on the floor. This is a sign of low muscle tone. A lot of people with autism are born with low muscle tone and by sitting in a W, it helps them balance their core with less effort on their bodies compared to criss-crossing your legs where your back muscles need to support you more. She also did not do much tummy time so her back and core muscles did not get a chance to develop much.

B E H A V I O R A L  /  S O C I A L

–  Hyperactive – Ayla was and still is extremely hyperactive and is always on the move. She is a “runner.” Once she mastered walking and running, she’s had a tendency to take off running when we’re outside of the house. She has a tendency to always run, even indoors, and there’s a lack of slow paced normal walking in general. Due to this, going anywhere is hard. If we have to go to a store, then my husband usually follows Ayla around while I do the shopping and vice versa. She will hardly ever follow you while you shop or sit still inside the child seat on a shopping cart, so I almost never get to run errands while I’m with Ayla alone.
– Easily Startled – Ayla would get startled and scared at loud noises very easily and would scream and cry when she was a baby. She still screams and cries at the vacuum or the blender if they are turned on without her being prepped about it.
– Transitions – Any type of transition was/is a challenge. She used to have a very poor adaptability to any new stimulus. Things have gotten much better since she’s turned 3, but it is still a work in progress.
– Sensory Overload Processing – Ayla hated being in any enclosed space with a lot of people, so the stores inside the malls, church, restaurants, other people’s houses, parties, gatherings were/is extremely difficult for all of us.
– Neediness/clinginess and mommy obsession – If I could describe Ayla in one word, that word would be “intense.” Everything is intense for her and with her. She was always very tensed and anxious as a baby, always clenching her fists. Her tantrums, cries, and stubbornness were/are always very intense. Mentally, emotionally, and physically I feel like I am always running on fumes, and she is so clingy and needy that she will not let me out of her sight for even a second before she starts crying and screaming. I cannot be in a different room than her at any moment or else it’s the end of the world for her. She will tantrum for hours if I let her. This is still something we need to work on, but it’s been the number one challenge since she was born.
– Difficulty Socializing – She was never interested in reaching out to anyone other than mommy and daddy. Sometimes even going to daddy was a struggle and still is to an extent. Whenever someone other than mommy and daddy came home, such as EI therapists and even family members, she would scream and cry until they left. She was never interested in other babies her age or even older.

O T H E R  S I G N S

– Gastrointestinal Problems – A lot of people with autism have GI problems. Ayla has GERD and she is extremely picky with food, having a strong affinity to carbohydrates such as pasta, bread, pizza, etc. She also is very specific to textures of food preferring crunchy over mushy. Ayla is also lactose intolerant.
– OCD tendencies – Ayla lines up objects a certain way, not necessarily in any pattern, but she obsesses over their placement. She also has to wear a certain set of clothes, always the same way, or a certain jacket everyday, a certain type of shoes, etc. She’s set on certain patterns of behaviors or routines in the extreme level. She also used to get fascinated and obsessed with certain objects and constantly stared at them while rotating it in her hand when she was a baby.
– Sleep problems – Ayla always had sleep problems ever since she was born. She not only had problems staying asleep (light sleeper), but falling asleep has always been a major problem and still is right now. No matter how exhausted she is, she’s always had a hard time calming herself down. We think it’s a sensory processing issue, but at this time we do not know how to solve it. Whether we had a routine or not didn’t matter. She literally does laps around the bed, in the dark, on her own, to the point of sweating and exhaustion, but she refuses to lay down to sleep. She can do it for hours. No matter how much we try to and sometimes even force her to lay down to sleep, it rarely works. When she was a baby (from 6 months on) she rarely slept outside of her own bed (aka the family bed) even while in a carseat! Most babies fall asleep so easily in a moving car, but even now it is very hard for us to get her to sleep while in the carseat.
– Looking at things that spin – Ayla loved looking at things that spun and still does now, like the ceiling fan and garden pinwheels. The first time she saw a ceiling fan she was absolutely mesmerized.
– Trains – She has a particular affinity to trains and it is probably enhanced by the fact that we live near the train tracks. We adults are so used to them passing by that we don’t realize them, but she is so very keen to the sound of the trains passing by that she always takes notice. People with autism are said to have an affinity to trains.

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After my daughter turned 2, a certain phrase kept ringing in my head over and over again. I used to know someone whose sister had severe autism and I would often ask her how they knew or how her mother found out. She told me that her mother used to say that her sister “hit a wall” after she turned 2 and stopped developing normally after that. And that was true for Ayla as well. I didn’t see much progress in her development after she turned 2, almost as if she hit a wall and couldn’t get past it.

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In the next installment, Jen shares her experience with getting the PDD-NOS diagnosis from her developmental pediatrician. You can follow her story on her blog and her instagram @yjk76.

Guest Series: Raising a Child with Autism part 1 of 5

1. Raising a Child With Autism Part 1 - The Signs by parenting
2. Raising a Child with Autism Part 2 - Getting a Diagnosis by parenting
3. Raising a Child with Austism Part 3 - Early Intervention Services by parenting
4. Raising a Child with Autism Part 4 - Challenges and Breakthroughs by parenting
5. Raising A Child With Autism Part 5 - Advice for Parents by parenting

PDD-NOS part 1 of 4

1. Raising a Child With Autism Part 1 - The Signs by parenting
2. What You Talkin' Bout? by Mrs. Hide and Seek
3. The Road Bends by Mrs. Hide and Seek
4. The Next Step by Mrs. Hide and Seek