Autism Didn't Ruin My Life

Toddler boy in black and gray with curly hair, and preschool girl with brown hair and pink shirt, walking away.

(Note: I am a work in progress, and I am learning more every single day. Please note, if you see references in this post that feel ableist, that I am learning, and continuing to improve my lexicon when it comes to respecting the disabled community.)

Autism did not ruin my life.

Autism did not stop me in my tracks.

Autism didn't knock the wind out of me.

Autism didn't forever change the trajectory of our lives.

This is our 'Finding Autism' story.

When our son was born, in those first few weeks and couple of months, we didn't think anything was any different. He made eye contact, he smiled early, he started reaching for toys; everything his older sister had done. We figured he'd be an early milestone baby, just like his firecracker of a sister. He even slept better than she did; those first few months. Slowly, we started to see differences. He seemed to struggle with holding up his head. We just said, well 'every baby is different' and he has a big head (it's a family trait!). Six months passed, seven months passed. The milestones got slower and slower. He was always a remarkably happy baby and a great eater. Nothing seemed to be on fire, so to speak, just slightly off the normal path.. but we kept saying that was okay.

People continued to tell us 'every baby is different', although by one year old, I had a cousin ask me 'what's wrong with him', since he was barely army crawling at that point, and clearly 'behind' those well-documented milestones. We ended up having a couple of minor health issues, and he had two relatively minor and non-life threatening surgeries. He had severe reflux, and we never slept; but, that's a story for another time. After one of his surgeries, the surgeon told us.. 'Hey, by the way, he has a single palmar crease. That combined with his low muscle tone could be an indicator of something.'. Cue the frantic googling and the realization that yeah, our son definitely had something different going on.

Let me stop here and highly suggest you stay away from 'Doctor Google' in these moments. I have learned that the hard way.

I looked at so, so many 'syndromes'. The term development delays popped up in every single one. But, that was the easy thing. The scary things were hidden heart issues, or other major medical problems. True, big time, terrifying, potential health issues. Those were the things I read, that put the fear in my head and in my heart.

We began to seek out therapy to help him work on those developmental delays. I asked people giving him the evaluation.. 'Do you think it could be autism?' More than once, I was told a firm no. He's way too social. He is funny, he makes eye contact, his social skills are his most advanced skill set! It simply cannot be autism. Because, we all know that every single Autistic person is completely devoid of any social ability (yes, that is heavy sarcasm!).  When I look back on this in hindsight, I'm frustrated that so many, so-called 'professionals' are completely ignorant on the depth and breadth of what Autism is. How many people have had a delayed prognosis, or NO prognosis, because they were 'too social'? While, I knew having a label on my son would not change anything I did for him or how I viewed him; my analytical nature wanted to know. My husband felt the same way. It's so hard going out there to fight the medical industry for your son, without knowing what to tell them other than a collection of traits.

Let's put the story on fast forward for a bit. We went through nerve wracking genetic testing. They tested him for any chromosomal deletions, and they tested for Fragile X. The genetic doctor told us, outside of his low muscle tone, he was a perfectly healthy looking boy and he really didn't suspect that he'd come back with any issues. He was right, the genetic testing came back with an all clear. An subsequent MRI came back with generally an all clear (a small blip with his pituitary gland that was unrelated to his development at all) as well. So, after years of wondering and a lot of expensive testing.. we were left in the exact same place we had been to start with. No definite answer. After putting to bed fears of any major health concerns, I simply didn't care anymore. The one and only thing I cared about was trying to win the battle with insurance. Oh, the bane of every disabled person and parent's existence.. those blood sucking companies who want to pretend they care about humans, but they only care about the bottom line. Insurance issues could be made easier, at least a little, with an actual diagnosis. For some reason, the things you need matter less without that official title.

Finally, we pushed (and I do mean, we pushed, because they tried to push back) for an Autism evaluation through the school. All of these other roads had been explored, and we hadn't gotten very far. The school did their autism evaluation and low and behold.. they gave us an Autism diagnosis. The diagnostician said.. yes, she would qualify him as being on the spectrum. The whole experience with the school was less than ideal, and I'll talk about that later.. but yeah.. they said our son has Autism. 3.5 years after I first asked someone if they thought he was Autistic, and they gave me a resounding 'no'. Long, challenging years of medical appointments and fear that something could be seriously medically wrong with our son. We passed those hurdles.  Autism? Yeah, sure, we figured it out by now. The Earth didn't move. I didn't cry, at all. I said.. finally.

It's not wrong to have hard days. We all have hard days. Our children have hard days. Being sad, overwhelmed and frustrated is going to happen to all human beings at some point. But, a hard day doesn't mean we have to have a hard life. We have not given up on our dreams and goals, just because our  son might have some challenges in communicating his needs and feelings right now. In fact, I thank Autism for giving my life more meaning. It has driven me to truly educate myself on Autism, thanks to the #actuallyautistic community and those people who know that having a differently wired brain is not wrong. It has driven me to become an advocate on all types of disability. It has given me patience and told me to look twice at people having a hard time. My son is not a burden and he is not broken. He is a gift worthy of all the good things in this world. It is my job to help pave the way for him to live his best life. Because Autism didn't ruin my life, and it doesn't have to ruin yours either.