Autism Is Not A Dirty Word, And It's Not A Punishment

When I Had Concerns About My Child, My Friends’ ‘Encouragement’ Was Actually Harmful

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Having Adam was the happiest moment of my life. They put him on my chest and I instantly felt a surge of joy I had never experienced before. We looked at our beautiful miracle and how he looked around the room. He was healthy. He was alert. He was alive. What more could a mother ask for? He was perfect.

Before taking on the role of “mommy,” I studied special education and worked with adults with developmental disabilities up until Adam’s grand entrance.

Adam reached milestones slowly. He was underweight and failure to thrive for some time, concluding our breastfeeding journey early and making way for more consistent quantities of formula. I blamed the delays on weight. How can you learn if you aren’t getting adequate nutrition? Adequate sleep?

When all his little friends were walking and starting to talk, Adam was happy to crawl and babble.

“He’s just lazy. Boys develop slowly.”

But I worried.

I worried as only someone in the field can.

I read ISP after ISP of the adults I had worked with, all starting with “…reached milestones late.”

I noticed hand flapping. The pediatrician said it’s normal for a young baby to do so. I tried separating work from home but everything ignited my worried feelings. If I were to follow my gut we’d be living in an ER, I’m sure.

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People waved to Adam. He didn’t wave back. People called to Adam. He didn’t respond. He shuffled his toys and he never played with them. He hated being read to but loved books. While I couldn’t pinpoint what made me feel this way I often felt like we weren’t even in the same room together.

If he was hungry, tired, thirsty — anything — he would cry in hysterics until we could figure out which need to fulfill. I had so much experience with children and adults with disabilities, but so little experience with babies, and zero experience with babies with disabilities. I just told myself this was normal: “He’s just a baby. “

The turning point for me was a day trip we took in the fall when he was just about 14 months old. We went pumpkin picking with a family friend and her family, including a baby girl three months younger than Adam. She pointed at things she wanted. She waved. Blew kisses.

She responded to her name and walked.

Running past us at any given moment was an 18-year-old boy with developmental disabilities, another member of her family who I have known a long time. He galloped. He hand flapped. He jumped up and down in excitement. I saw more similarities between my son and this young man than my son and the baby close to his own age.

I was at the pumpkin patch, but I wasn’t, all at the same time. I was making an inventory in my head. What is Adam not doing? What repetitive behaviors is he exhibiting?

I went home and made an actual list. The first item being “does not respond to his name.” Everything in the world can be perception (is he hand flapping or excited?) or laziness (he just doesn’t want to walk) or my imagination, but he did not respond to his name, and that was a concrete, definite issue.

It’s so hard to “trust my gut” because having anxiety means that gut feeling happens every day, every moment. Just yesterday I convinced myself I had skin cancer because an old scar looked a little funny. I can’t always trust that thing.

So I talked to myself the way I would talk to another mother. It doesn’t hurt to get the evaluations and the earlier you get services, the better the outcomes. We know this. Worst case scenario, the doctor thinks you’re being silly and that’s a good outcome in itself. Either he doesn’t have autism or he does, and I’m doing everything I can to help him.

When bringing this up to my partner, he didn’t dismiss me, but was not convinced by my findings. I had my pitch ready. Adam’s check-up was in five days. I’d ask the pediatrician what she thought and we would go from there. If we needed early intervention, the evaluations and services were free so we wouldn’t have anything to lose. He agreed and we embarked on our journey to early intervention services.

Through evaluations, we found he qualified for early intervention.

Adam now has two teachers who come to the house and play with him. He responds to his name, points with abandon, and fills in intraverbals. I get teary eyed thinking about how far he’s come since starting his services only six months ago. Had I waited six more months, we would be at a starting point, and it would be that much harder for him after potentially becoming set in his ways. Furthermore, early intervention only covers until three years old, and then they are transferred to the school district. If you delay until they are too close to the transition age, they may not make as much progress just by virtue of having to transition once they begin making significant progress.

I think talking to others about autism is tricky. I am not ashamed. I am not upset or sad about his ultimate diagnosis. I am proud of myself for working through my anxiety to get my son services he needs. I am proud of my partner for how he has embraced having a son with autism and incorporating all of the suggestions we are given from early intervention into our daily life.

Throughout Adam’s life, whenever I mentioned a concern — be it not walking on time or not responding to his name — I was met with some pseudo-encouraging soundbites from other mothers.

“Boys develop slower.”

“Everyone develops at their own pace.”

“He’s going to catch up.”

“Don’t worry about it.”

“He’s perfect!”

It’s not that I think the people saying these things are inherently wrong (Adam is perfect, in my humble opinion) or trying to be hurtful by telling me he is fine, but it could have been really damaging.

There were so many times I was tempted to listen to people wanting to be comforting. If I didn’t have the level of education I have in the subject matter I studied, I might have listened and put off getting him evaluated. Put off getting him the services that have been such an amazing blessing for our family.

I’m not going to say that if a friend comes to you saying she thinks her child has autism that you should sound the alarms, rush the child to the pediatrician, and have a good dramatic cry about it. Far from it. But I feel our conversations around autism (and other disorders) need to change, and seeking help needs to be seen more positively. Not all moms can trust their gut, so when your friend says she thinks her son has autism tell her to make a list of concerns and an appointment with the pediatrician. Tell her it can’t hurt to get evaluated. Tell her the early intervention services are free and run by highly trained professionals. Tell her if he doesn’t qualify, they can still provide you with resources on how to help your child in different areas.

If you think your friend is being over-worried and anxious about their child’s development, then tell them it can’t hurt to ask their pediatrician. Tell them they can even contact early intervention in their county if they don’t want to drag their child to the doctor (as mine goes kicking and screaming) just to get the referral for early intervention.

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You can tell them their baby is perfect. But don’t tell them their baby is perfect as though it were conditional. Tell that parent that their child is perfect and he or she will still be perfect if you get them evaluated. And they will still have their same precious angel if the evaluators say the word autism.  When people responded to my concerns with “he’s perfect,” it was like telling me that your child can only be perfect if they do not have autism.

When the evaluator first said “autism,” he was careful about how he said it. He said, “He’s so young. We just can’t know. But I think he will absolutely benefit from services.” I think about this sometimes when I join an autism support group on Facebook or when someone asks what my son gets services for.

While speaking to an older coworker whose (now adult) son had received speech services when he was young, another (younger) coworker asked what he gets services for. I took this as a moment to normalize and not sensationalize what was going on with Adam. “Adam currently has a diagnosis of autism and gets early intervention to help him with speech and play skills.”

Even in our field with so many years of experience between us, autism can sound like a dirty word. But I make a point to talk openly and positively about my son, his services, and his progress. If that young coworker has children one day, I want him to think back to that moment if he’s struggling with whether or not to get his child evaluated and remember that seeking out an evaluation is no big deal. I want my coworkers and my friends and family to know that we aren’t ashamed of our beautiful and perfect little boy, no matter how long this road may be, or how bumpy (maybe it’s just a little more fun that way too).

I used to be in a group chat with several moms I had met through a breastfeeding support group. One day when scrolling through, I saw one woman say (when discussing concerns about her son’s development) that autism is her worst fear. How, in a world of pregnancy loss, disease, and tragedy can you pinpoint autism as the worst thing that can happen to your child? Autism is not a tragedy and we need to stop talking to mothers like it is.

I don’t write this because I’m sad or feel robbed of some normalized parenting experience. I write this to remind parents and friends of parents that autism isn’t a dirty word. It isn’t a punishment. It’s just one more aspect of parenthood that we do the best we can with. I hope that as a community of parents we can reevaluate the way we talk about autism, and the way we address mothers concerns when they aren’t sure if they should seek out evaluations.

Tell her to get the eval. Tell her that her child is and will continue to be perfect. And please, do not dismiss her concerns. It could be the difference between that mom seeking services or putting it off a few months too many.