“So that’s that.” I thought as I hung up the phone with the doctor. She had just informed me that my “neurotypical” child, my youngest son, Eli was also on the spectrum. His older brother, Owen was diagnosed with autism shortly after Eli was born. This shouldn’t have come as a big surprise because I know the large part genetics plays in autism and I’ve been watching Eli for red flags since birth. He first began showing signs of autism at four months old. However, as his language took off, along with his ability to follow one and two step directions and engage socially with his peers, I dared to believe that he was neurotypical. Even then, my thoughts constantly bounced between “Is he?” and “Isn’t he?” Still, hearing the words out loud came as a surprise and they stung a little.
I got the call a little over two weeks ago and I still haven’t done anything about it. Within two weeks of Owen’s diagnosis we had five therapists in our home every week. Of course, that was a different situation, I was a different person and it was a different time. See Life After Autism.
Normally I write about my past experiences and how I overcame those challenges. Today I’m writing about the feelings that I’m having now with no plan of action. I have no idea what our journey is going to look like with Eli. I don’t feel afraid like I did with Owen. Just tired.
Even as I write this I’m not sure how to put into words what I’m feeling. I think numb is a good place to start. There’s a part of me that feels vindicated for all the time I’ve spent worried about his development and feeling alone with my concerns. Because Eli’s red flags or what I like to call “ism’s” are different than Owen’s it’s been hard for others to believe that he may have autism too. Then there’s another part of me that feels a sadness for what could have been. There is no doubt in my mind that Eli and Owen will live full lives (God willing) and that they will be able to do anything they set their minds too. The sadness is more about the struggle that comes with a disability like autism. On top of the typical pressures of growing up: puberty, friendships, and relationships; Eli, along with his brother, both have to deal with autism and the sensory sensitivities, anxiety and depression that often accompanies it.
Have you ever heard the saying, “If you’ve met one person with autism; you’ve met one person with autism?” That makes a lot of sense to me now as I’m raising two little boys with varying degrees of strengths and weaknesses. Even their ism’s look different.
I’ve become rather fluent in reading Owen’s cues and understanding how he learns and what he needs. Since Eli talks so well and was capable of following directions l became complacent in teaching him like I did with his brother. I feel guilty for spending so much time and attention on Owen and not as much on Eli. This was because I assumed Eli’s development was neurotypical. It’s just that Owen struggled for so long, that all of my attention had to go to him in order for us to function as a family. Eli hasn’t struggled as much, by default he got less of my attention. Another valuable yet painful lesson I needed to learn so that I can be more available to him in the future.
Just as no two kids are the same; no two autistic kids are the same either. Take my boys for example, Owen’s highly sensitive to certain sounds, smells and tastes and has severe food selectivity but seems to be less sensitive to touch (i.e. he doesn’t seem to notice temperature much at all, if water is too hot or too cold, etc). Eli doesn’t appear sensitive to sounds or smells, and he eats a variety of foods yet he’s very sensitive to temperature (weather, water, food, etc.).
Owen has a lot of language but only recently has it become more functional. His language is very repetitive and he has very little back and forth communication skills. He’s unable to express himself much at all unless he is repeating something we’ve practiced or he’s seen on tv. Eli, on the other hand, has advanced language skills to the point of being precocious. This is the single most misleading fact about his diagnosis to me. Every article on autism talks of little to no eye contact and language as the red flags for autism. What they don’t tell you, without digging a little deeper, is that precocious language is also a red flag more affiliated with Asperger’s, a diagnosis that now falls under the umbrella of autism spectrum disorder. He also perseverates on topics, and will ask a question over and over again regardless of how many times we answer him.
Both of my boys make eye contact, Eli better than Owen. Most articles that list the red flags for autism do not mention that inconsistent eye contact is a more common red flag than no eye contact. If you are looking for your child to keep their head down and eyes averted at all times then you may be missing the subtleties of inconsistent eye contact. This looks more like fleeting eye contact, disinterest or simply that your child is staring at your eyebrows nose or mouth and not necessarily in your eyes. If Eli brings up the topic of conversation and is very interested in getting his point across then he will make and hold eye contact for a period of time. His eye contact becomes less consistent when he’s less interested in the topic of conversation or when he knows that he has my full attention and I look directly back at him. It’s during those times I’ll notice that he’s focusing on my facial features rather than my eyes or will suddenly become pre-occupied looking elsewhere.
Finally there are the repetitive behaviors and interests. Owen looks more like the typical autistic kid, sitting in the corner, completely absorbed in his toy car, as he rolls it back and forth while the other children play around him. Eli was never into spinning wheels, instead he loved to flip lids. He’d spin or flip them and watch them wobble until falling flat then he’d flip them again. At one year old he could get three different bottle caps wobbling simultaneously. It was quite an impressive skill. He no longer flips lids. He now loves to make his toys soar through the air in a perfect arch. He does it over and over again while making a sound like they are falling. Sometimes he watches them fall out of the corner of his eyes and other times he just does the movement repeatedly.
Owen has never flapped his hands. Eli is a frequent hand flapper. Since he could move he’s jumped or bounced and flapped his little hands while making an “o” shape with his mouth. He still does that for long periods of time in front of the tv when it’s turned off. I think he likes to see the rooms reflection as he bounces up and down. He does it in the car and especially when he’s excited. It’s adorable to watch and if it makes him more comfortable or helps him to relax then I say, “Flap on, little buddy!”
The only ism that they share is a significant delay in fine motor skills. For example, most children with typical development automatically know that you don’t have to grip a pencil as hard as you would a book so as not to drop it. Both of them have a difficult time understanding when to change the pressure of their grip. They don’t seem to understand why they can hold the pencil but not the book by applying the same amount of pressure. Problems with fine motor skills affects their ability to draw and write as well as getting dressed and undressed. It causes problems with potty training as they have a hard time pulling their pants down and back up again.
Having a second child diagnosed with autism isn’t as painful as hearing the “A” word for the first time. However, it does come chalked full of its own worries and heartaches. With a second diagnosis it’s clear that genetics plays a significant role in our family. This raises a very important and much needed conversation between my husband and I about whether we want to have more children. We both would love to have a little girl to complete our family. But our advanced age and having two other children already on the spectrum would increase the likelihood of having a third child on the spectrum. That’s certainly not the only reason we would consider not having another child but it’s cause for a conversation and much thought and prayer.
It sounds so cliche, the more difficult the situation the larger the lesson, but its true. Parenting two children on the spectrum was not part of my dream when I was pregnant and planning our future. I wasn’t so naive to think that there wouldn’t be challenges in raising children. All of us know that our children are going to struggle at different times in their lives. With neurotypical children it’s more often a gradual struggle as life’s lessons present itself over time. With a diagnosis like autism, you are going about life just like everyone else, secretly knowing that your child is a tad bit more amazing. When out of the blue someone tells you that something is “just not right” with your perfect child. When you finally get the crushing blow of an autism diagnosis it’s like someone handing you a box filled with all of your fears for your child and you have to sort through them all at once.
There is no little bit at a time with an autism diagnosis. You are thrown into turbulent waters on parenting overdrive and you swim or your child sinks. At some point in your journey an amazing thing happens, you realize that your child has started to swim beside you. Where once you thought they couldn’t they can and they do. Having a child, er, children on the spectrum makes every day tasks seem like monumental milestones to be celebrated. Once you’ve witnessed the miracle it’s almost impossible to take life for granted again.
Still have questions about autism? Please read my other article, What is Autism Spectrum Disorder? It explains the red flags, signs, symptoms and treatment options in more detail.
Do you have more than one child diagnosed with autism? I’d love to hear from you! Please comment below or send me an email. I’d love to hear your story!