“If you’ve met one person with autism, you’ve met one person with autism” – Dr. Stephen Shore.
In 1963, the National Autistic Society chose the puzzle piece as a symbol to represent autism awareness and this symbol has been embraced by other autism organizations over the years. Some people have expressed sharp criticism for the puzzle symbolism while others embrace it. I definitely fall into the category of people who like the puzzle symbolism because it provides an effective visual explanation of how an autism diagnosis can come together in a unique way for every individual on the spectrum.
This post is going to be my attempt at explaining how our puzzle uniquely came together early on and led us toward a diagnosis of autism. Not every autistic individual will present with the same early signs that my son did, but there could definitely be a few common threads. I am also planning to do a follow-up post to share how we finally got our diagnosis and how things are going for us now at the age of 4.
I first suspected my son might be autistic when he was a young baby. It’s not something I discussed with other people at the time, not even with my husband. I just had this gut feeling that there was something a little bit different going on with my son’s development.
I think the earliest, most obvious sign with my son was his head size. Yes, I realize head size is a point of contention in the autism world right now. Some studies have shown head size is a factor whereas other studies have shown it is not. I’m including head size on our list because I think it was a factor for us.
My son’s head was not gigantic at birth; although, my in-laws will try to tell you something different. They argue his head has always been huge and think they know better than the woman who gave birth to this child and watched as his cranial measurements increased off the normal growth curve during our first few well-child visits. By 5 months of age the increasing growth rate of my son’s head was concerning enough that our pediatrician ordered an ultrasound be done through my son’s soft spot to make sure everything was OK in there.
It took us about six weeks to get in with the pediatric neurologist and I spent that entire time really worried about my son. Fortunately, the ultrasound was quick and easy, and it ruled out any obvious medical issues like hydrocephalus. The neurologist concluded that my son just had a really large head and was otherwise “sharp as a shiny penny.”
During the first year of my son’s life, he screamed and cried a lot. Sometimes it seemed like he was upset for no reason. Other times loud noises and activities such as changing his clothes or a diaper would set him off. Sometimes transitioning between environments (i.e. putting him in his car seat and leaving the house) would set him off on a crying jaunt as well. These were all early signs of sensory issues; although, I had no idea that’s what it was at the time.
As I’ve mentioned before, hand flapping was another sign for us. He would see something he really liked or found exciting and his happy little hands would start flapping. He also lined up his toys on occasion, but more frequently he would toss them over his shoulder repetitively. My pediatrician witnessed my son doing it during a well child visit and was so fascinated by it. He said in his entire career he had never seen a child do that. Still, the behavior wasn’t concerning enough to warrant a referral for an autism evaluation. We decided to take a wait-and-see approach.
My son started experiencing night terrors as he got older. He would randomly wake up in the middle of the night, sit up in bed, and scream for 45 minutes at a time. There was no consoling him and nothing I could do to comfort him. We just had to sit with him, be gently supportive, and let him work his way out of it himself.
The older my son got, the more obvious his social issues became. He would blatantly ignore people who talked to him, other than my husband and I. He showed little to no interest in parallel play and socializing with other children. It’s like he was in his own little world a lot of the time. He played independently of others.
By the age of 2, my son was definitely behind with his speech. He was not speaking in sentences and still screamed a lot to try and communicate his needs. When he did start to talk, I can think of several times when his speech would regress and he seemed to forget words he had been using the day before.
My son’s speech really started to improve around the age of 3 and he began speaking in sentences and was able to communicate his wants and needs. However, we also noticed other speech issues emerging such as echolalia, scripting, pronoun confusion, and referring to himself in the third person. Once I realized his speech issues were improving but new issues were emerging, I finally decided it was time to seek out an assessment with early intervention.
Alongside all these troublesome signs were some pretty awesome things too. My son really was a pretty happy kid most of the time. He had a charming smile and infectious laugh. As he got older he gave hugs and loved to cuddle. We also watched as his amazing visual memory became more and more apparent to the casual observer. By the time he was 2 years old, he had memorized the whole alphabet and some phonics. He also really loves animals and has developed a bit of a special interest in them.
Seeking Out an Assessment
All these various pieces of the autism puzzle came together for us around the age of 3 and that’s when I got really serious about seeking out an autism assessment for my son. If any of you are thinking about getting as assessment for your own children, start now because waiting lists are long. It took us over a year to finally get a diagnosis and start treatment. We ended up aging out of the early intervention program before we could get in and instead got an evaluation/IEP done at age 4 through the local school district. I’ll share that experience in more depth in a future post.
I’d love to hear from my readers — How did the autism puzzle come together for yourself or your child? How long did it take you to get a diagnosis and start treatment?