What You Need to Know About My Autistic Son

I became an autism advocate on June 19, 2008, when my son, Michael, was diagnosed on the spectrum at three. It’s been a decade, and you would think that with the ever-flowing stream of information available to us in our online culture that people would be more educated about and more understanding of autism. Unfortunately, this is not the case. As a whole, there is still a lot of ignorance and misconception about autistic children, and it infuriates me when I see people treat Michael differently when they learn he is autistic. My son is not broken, and you don’t need to treat him like he is. In fact, there are probably several misconceptions you will have when you hear Michael is autistic, so let me clear all of them up for you. Here is everything you need to understand about my autistic son.

Like other kids

This is one of the most important points I can stress. Just because Michael has a diagnosis of autism doesn’t mean you need to act differently around him or towards him. Do you act differently around people who have been diagnosed with diabetes or heart disease? As far as I’m concerned, his diagnosis is no different. Autism is a part of who he is, but it isn’t all that he is. He’s a typical 13-year-old boy. He has likes and dislikes. For example, he loves animation and all things Pixar. His dream is to work at Pixar someday. Engage with him about Pixar movies or how animation varies when done on a computer versus when it’s draw by hand, and he will talk with you for hours. He’ll even show you the programs he uses to create his own animation. Engage with him about sports, for example, and he’ll be antsy and make it clear he wants to disengage because sports aren’t something Michael gets excited about. Sounds pretty much like every other kid you know, right? That’s because he is like every other kid. 

Understand

Michael has language processing disorder. Since his brain isn’t always paying attention, there are times that he hears what you are saying, but his brain doesn’t process it right away. Sometimes he needs a bit more time, so give him time to process the question fully. Be warned, however, that because he knows it’s rude to not answer when people ask you questions, he will sometimes answer with standard responses to the most commonly asked questions. So asking him how he likes school this year may result in a response like, “I’m good.” This is because he knows a standard question people ask when they engage with you is, “How are you?,” so he has an answer prepared if he doesn’t quite understand the question. Instead of turning to me with a look on your face like my son is an alien, simply ask your questions again (but not louder since he isn’t deaf and doing so just makes you look ridiculous). Chances are the second time will result in a more appropriate answer. Again, this isn’t an issue all the time. Michael’s brain works like a circuit board with a short. You never know when that short is going to trigger, and most times now that he is older, it happens less frequently. Nonetheless, be considerate.

Feelings

It is common stereotype that autistic children are incapable of feelings. In some cases, yes, there are children who have a harder time understanding or expressing emotions. Assuming this is the case for all children is wrong. Michael experiences very deep emotions. He’s very sensitive, and his feelings get hurt easily. If I am upset with him about something, he is unable to do anything until we clear the air. He’ll apologize and even insist on a hug to ensure everything is good between us. He gets nervous when he has tests like any other kids his age. He tells me daily that he loves me, and if I’m hurting, he does whatever he can to make me feel better. On one occasion when I was sick in bed with a migraine, he drew me a picture of a flower and hung it up next to my bed to cheer me up. Does this sound like a child incapable of emotion? I know several “typical” adults who aren’t capable of that level of emotional depth. They could learn a lot from Michael.

quirks

Michael’s diagnosis came with a plethora of issues he has had to learn to overcome. Let me break them down for you:

  • Hypotonia (low muscle tone): He fatigues easily.
  • Sensory integration disorder: His senses are overly sensitive.
  • Hypermobility (double-jointed): It’s hard for him to hold pens or use utensils well.
  • Hyperlexia: He can memorize almost anything, but this disorder relates to his language processing disorder.
  • Emotional Immaturity: His maturity level is about a year or two behind his peers.

When I mention any of these obstacles to people in conversation, they automatically take on a tone of pity, and they start to treat Michael like he’s fragile, dumb, or weird. His diagnosis makes him none of these things.

While these issues have presented challenges that have frustrated Michael, these also contribute to the very best parts of him. The hypotonia made sports difficult for Michael, so instead, he decided to be in band, and has become an amazing drummer. The sensory integration disorder makes Michael especially ticklish, and when he gets going, that laugh could brighten anyone’s day. Because it’s hard to write, Michael prefers to type on the computer, and his word-processing skills put mine to shame. The emotional delay means Michael can be a bit silly, so he’s drawn to sitcoms. This coupled with his hyperlexia that gives him the skill of memorizing anything results in Michael memorizing episodes of his favorite shows and often reciting scenes that he found most entertaining. We have a lot of fun with this. 

These are all the little things that make Michael who he is, and I wouldn’t change any part of him and neither would he. Michael knows he is autistic, but that’s just a word to him. He knows that he struggles at things and that he has to work harder at school, but he accepts it and doesn’t dwell on it. Since he doesn’t understand that he is different based on social standards, he is unapologetically who he because that’s all he knows how to be, and this makes me proud. He’s my imperfectly perfect son.

More about you

We tell children that they should strive to stand out and be who they are, but when we meet a truly unique child like a spectrum child, we don’t embrace the difference; we emphasize it by freaking out and acting like the child is something other than a child. Our behavior changes and becomes awkward. I often wish I could record people when they interact with Michael and play it back to them so they can see how ridiculous they are being. Having experienced this type of behavior for a decade, I have learned one very important lesson that I have shared with Michael to help him cope with people’s reactions to him, and I will leave you with that lesson as well. Just remember that when you act differently around my son or tell me that you can’t relate to him because he’s autistic, you are saying way more about yourself than you are about him.

 

Why a Butterfly?

Anyone who knows me well knows I love butterflies. What’s not to love? They’re alluring with their intricate patterns and amazing colors. Their grace when they fly and flutter about is lovely to watch. They’re beautiful, but that’s not why I love butterflies. I love them because they remind me there’s always hope at the end of every situation.

Everyone knows the butterfly metamorphosis metaphor. It’s a cliché at this point, but I don’t care. As I look back at life, I see the cycle of the butterfly clearly in all the events that have shaped me: caterpillar, cocoon, and butterfly. It’s a cycle that’s repeated over and over again in my life, and that’s fine because I know no matter what life presents, no matter how dark the cocoon, I will always emerge as the beautiful butterfly I was meant to be.

Caterpillar

I know that in most metaphors the caterpillar is considered ugly and that this is viewed as a negative life stage, but this is not the case in my metaphor. The caterpillar is the symbol of living life. I believe we spend most of our time in the caterpillar stage just going about our day-to-day business. These are the periods of stability, comfort, and even boredom—the time we spend just having simple days. There are good and bad days in this stage but just your standard highs and lows. It’s just us going through life, crawling around, and doing what we need to do.

This is a good stage. After all, what’s wrong with having a stable, consistent life where you know exactly what to expect? The problem is that if you stay a caterpillar, you never grow. The point of life is to become the very best version of yourself you can become, but how do you do that? Well, sometimes life forces you to do that. It leads you to experiences, circumstances, or even people who force you to begin your metamorphosis.

Cocoon

Everyone at least once will enter the cocoon stage. At the introduction of the catalyst for your change, you start by feeling angry, lost, hopeless, and/or alone. You feel like no one understands what you’re facing. Heck, you may not even understand what you’re facing. Eventually, you begin to go inside yourself to reflect, to strategize, to figure out how you’re going to overcome the mountain in front of you. You create your cocoon and attempt to find hope and guidance within it.

This can be a very dark time depending on what you’re going through, and it can scare the hell out of you. There will be times where you want to scream and times when you cry—a lot. There will be times where you want to give up because it seems like your only option. There will be times where you have no idea how you will even get through the day, but you get out of bed, put on a brave face, and do your best to keep it together. You make it through that seemingly impossible day. Then, you get through the next day and the next day, and as you do, something amazing happens. You start to empower yourself. You start to find your strength, and you start to tell yourself, “I will get through this.” And, you do!

Butterfly

Once you make the decision that you will not let “this” beat you, you begin to break out of your cocoon. You begin to define who you are outside of this experience, and you start taking steps to be that person. With each step, day, or change, you punch out of the cocoon, and then, one day, you emerge as a beautiful butterfly.

My favorite part about being a butterfly is the moment you realize that the very thing that sent you into your cocoon has no power over you anymore. It may have scarred you in some way, but you are now stronger than the obstacle. You’ve learned from it; you’ve grown as a result of it. You’re a different person, a new, better version of yourself. You went through the darkness and now fly in the light. It’s an amazing feeling.

The challenges and experiences that inspired me to write this blog all took me through this metamorphosis. I am who I am because of everything I have been through, experienced, and survived in my life. I’ve made many cocoons, and I’ve emerged from all of them a butterfly. That’s why I included a butterfly on the header for my blog and why I use the butterfly as my icon virtually everywhere. I even have a butterfly tattoo (although very few people have known this until now). It reminds me that no matter what life throws at me that I will overcome it. When the challenge in front of me seems impossible, I will find a way to make it possible. In the darkest times when I feel like all hope is lost, I simply have to remember that butterfly deep inside of me. That butterfly is unfailingly always with me giving me the strength and courage I need to persevere. That butterfly is always going to see me through because that butterfly is always unfailing Andrea.

It All Starts With a Spark

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The first time I heard this quote was at my mom’s funeral. The visiting priest obviously used this as his standard eulogy, inserting the details provided by the family to justify how their loved one fits the quote. In my mom’s case, he used it to describe her life as a housewife. While this itself could be a topic for a post (and I’m sure it will find its way into a blog or two), that isn’t what struck me about the quote. I heard the quote, and it stirred something in me. The words hit me—hard!

I’ve thought about this quote every day since the funeral, mostly because I don’t believe I am living the life I was meant to live. I’m a successful working woman, an amazing single mom, and a supportive friend/sibling/coworker. I’ve been a caregiver, therapist, activist, and every other role you can imagine. So, what’s the problem? Where’s my fire?

It is that quote. It haunts me daily. I’ve all the characteristics life has forced me to develop. I can be as hard as a diamond or as soft as a security blanket depending on the situation. I’ve handled every obstacle life has thrown at me, and I’ve come out on the other side stronger, smarter, and more determined. It’s that quote that makes me look at all the experiences I’ve been through (and I mean the equivalent of six lifetimes worth of experiences) and realize that maybe it’s those experiences and what I have taken away from them that is the fire I have been looking to ignite.

That’s why I decided to start this blog. Life is insane, and it’s easy to feel like you are going through your trials alone; I know that’s how I felt. I never want anyone to feel that way, so I’m creating a space where people can feel supported and realize that there are people out there who understand what they are going through and who may even have some advice to share to help get them through. If I can share an experience that makes a single mom feel better about the day she just struggled with, that’s a spark. If I can help a caregiver understand that it’s OK to take care of herself/himself, that’s a spark. If I can help someone look in the mirror and love who they see, that’s a spark. Eventually, all those sparks will ignite a fire—a fire to keep the community who find comfort and strength in the words I share warm.

This initial post is the first spark. As someone who has always been a very private person, this will be a challenge to me to step outside of my comfort zone. I’m ready to accept that challenge to share the experiences I have grown through and the knowledge and strength that growth has given me. I am not sure where the spark will lead, but I know that if one person is inspired by anything I write here, then I will have created that fire, and that will make it worth it.