My son’s autism one year after diagnosis

This was written late at night just over a year ago. It was the day my wife and I learned our then 2 1/2 yr old had autism. I’m sharing this for Autism Awareness month to let other parents know they are not alone. At the end of this piece is an update.

autism — noun — a developmental disorder of variable severity that is characterized by difficulty in social interaction and communication and by restricted or repetitive patterns of thought and behavior.

When I used to imagine autism, I imagined the frustration. The frustration anyone who has autism might feel in having needs and desires they can't get out or patterns of behavior from which they can't get away. There's a terrific Netflix show called Atypical about a teenage boy with autism and his neurotypical family dealing with him and each other. In one episode the point is made that people on the spectrum want love just like anyone else but they struggle with how to go about it.

When I imagined autism I also imagined the frustration, worry and heartbreak of the parents who love them. I would stand in autism's shadow from a great distance in complete awe and admiration of parents who somehow day in and day out cared for their child, brought them to constant therapies and worked with them at home. Parents who were sometimes struck and bit. Parents who sometimes had to deal with epic meltdowns in public. Parents who I imagined are pushed to the brink of mental exhaustion yet never stop loving and caring for their child while still working full time, taking care of a home and raising other kids as well. In short, these parents to me have always been heroic. I knew I could never be that tower of strength.

This afternoon I found out I have to be.

My son Atticus was born in September of 2015. The pregnancy was normal, healthy. No cause for any concerns right up until his delivery day. Something began going wrong in the final stages of labor. We'll never know what caused it. He was born completely lifeless and blue, head to toe. He was immediately whisked off to the side where nurses began trying to resuscitate him. We learned much later through hospital records that his probability of survival in those first two minutes was in the teens. He was basically stillborn. I watched my son somehow slowly come to life with a slight gasp and the smallest spot of pink replacing the blue in the center of his chest, and a twitch of a limb. Slowly the pink spread, his body became animated and he finally began breathing.

They thought everything was fine until 18 months. We told our pediatrician we had concerns about autism because our boy was talking but not as much as we would expect from an 18 month old. We were assured he seemed fine in every other way and that this was common among baby boys compared with baby girls.

As the months wore on, his vocabulary increased only marginally. We began speech therapy and were assured after an evaluation that he was definitely not autistic but only speech delayed. Within a month or two they expected a "language explosion." It never came.

Soon we were taking him to an occupational therapist because certain physical quirks appeared and we were told he had a sensory processing disorder. That can be comorbid with autism but we were told again he passed every screening and his sensory issues and speech delay did not put him on the spectrum. He was too social, too engaged and his receptive listening was tremendous. They connected his sensory issues to his traumatic birth and told us half of all babies born this way end up with sensory troubles.

Next was Early Intervention, which did a comprehensive in-home evaluation and came away saying the same. He was not autistic. He has a speech delay and sensory issues but was far too social, affectionate, gesturing, etc., for it to be autism.

The therapies all continued with in-home speech therapy and occupational therapy and a special therapy-based play gym. We kept meticulous notes on how often we ran sensory brushes up and down the backs of his arms, legs, across his palms, bottoms of feet and back. We tracked how many times a day we put him in a weighted therapy vest. So many other things. All while being told to be patient. With only some improvement we sought answers with a pediatric neurologist. An EEG was done. An MRI was done. Test results showed nothing. Blood work was done for genetic testing. It was normal.

Finally at 2 1/2 years old we got him to the behavioral center at Nemours duPont Hospital in Wilmington, Delaware. We were running out of explanations and felt more and more that all the experts had to be wrong. As we approached the behavioral center across the street from the main hospital, we turned in one driveway too soon. The building in front of us was not the behavioral center but a Ronald McDonald house where parents of very sick children who are hospital-bound can stay for free to be near their child. That put everything into perspective. We were traveling there expecting a diagnosis of autism. That Ronald McDonald house was a brick-and-mortar testament to how things could be worse. How autism is not a death sentence.

These people at duPont were amazing and changed the course of his life. It was one week ago that he had his evaluation/observation. We were told at that time if he did have autism he was probably borderline and high functioning. So they scheduled what's called a STAT test for a week later. Which was today.

This afternoon we received the official medical diagnosis that our little boy is on the spectrum. He has autism.

I thank God we have an answer. We have a plan with a new course of ABA therapy and a path forward. There's no cure for autism, but with getting him started so young we're hopeful that he can live as normal a life as possible. He deserves to. He's a wonderful little boy.

Which brings me to my point. I already can feel what most parents of autistic children want is for people to see their real child inside and how wonderful that little boy or little girl is. How unique they are. To see past the autism. There's an expression within the community that if you've seen one autistic person then you've seen one autistic person. It's why it's called a spectrum. Such a wide variety. No matter where they fall on that spectrum these are real boys and girls and good men and women each with their own wonderful qualities just like all of us.

The Netflix show I mentioned, Atypical, had an episode where it came out that the autistic teen's father kept his son's autism from his close co-worker for five years because he was embarrassed by it. People's cruelty can lead to such awkward feelings. But people's cruelty is no match for my little boy's kindness. He lights up a room. He pulls people by hands to form a circle in which he then dances at family gatherings and giggles endlessly. When his baby brother Cooper came home from the hospital and would cry he would bring him his toys thinking it would help. When he was about half a year old and I first found out Bill Doyle had cancer, I came upstairs to where he and his mother were. Tears in my eyes I told her what was going on with Bill. That's when he said his first word, Dada, because he knew I was upset. He's an amazing little guy and will be an amazing man.

It's not him I worry about. It's me.

After years of watching autism affect families from a great distance, I'm now having to step out of those shadows to center stage and deal with this head-on. The heroes I've seen, those towers of strength I've been in awe of, seem beyond my grasp. Can I ever be that strong? God, I hope so. This little boy is going to have a harder road than most and he needs me. Just like his mother, I look at him and see his inner glow, his beautiful spirit. He deserves the best as he starts down this road.

I'm reminded of another show. NBC's This Is Us. An episode where Beth is pregnant and Randall is in a hardware store. He's freaking out that he might not live up to what he wants to be as a father and he begins venting to a total stranger. The man wisely says that when you have children, they tell you who you are.

Today I found out my son has autism. You're a gift, Atticus. You continue to tell me who I am. It's late at night as I'm writing this and you're asleep upstairs. But through the hiss of the monitor, from deep in your slumber, I can somehow hear your whispers trying to tell me who I will be next. I'm listening. And I love you with all my heart. This is who you are, and I honestly wouldn't change it for all the world because then you wouldn't be you. I want to help you overcome your challenges and be the best you you can be. But this is who you are, and that's wonderful. You are my son, and I'm proud to be at your side as you take these first steps of your long journey.

Today I found out my son has autism. And I found out I love him more than ever.

UPDATE: That was one year ago. Looking back on it I realize even more clearly how much Atticus was slipping away from us then. He had almost entirely stopped eye contact in the weeks leading up to diagnosis. He was stimming obsessively. He was more withdrawn than ever.

Upon receiving that diagnosis we immediately sought and got him the help he needed. We began ABA therapy, continued with occupational therapy and found new speech therapy. Just a year later Atticus is not only looking people in the eye, he’s interacting, hugging on his own, and showing affection more than ever. He’s now beginning to play with toys appropriately and understanding more of the real world around him. He now seeks out and plays with his little brother whereas before he pushed him away and wanted nothing to do with him. He belly laughs at our family’s puppy and plays with him nicely. He’s making progress in speech and his most remarkable progress has been from ABA therapy where he is identifying colors, letters, matching objects, scanning and differentiating, focusing for long periods of time, etc. He’s started making friends. He’s far happier and far more confident. He’s also becoming far more independent. He also has far fewer tantrums, actually fewer than most neurotypical three year olds. His mother and I are very grateful to everyone on his team helping him and very proud of him for all his hard work. We’re hopeful for his future.

If you’re new to this, yes, being the parent of a child with autism can be exhausting, stressful and worrisome. With so many therapies needed it can put an ungodly strain on your family’s finances. Believe me, I understand. But trust me when I say it’s worth it. They’re worth it. They love you. Even when they can’t show it, trust me, they’re in there, and they love you and need you. Don’t give up. Reach out to others when you get overwhelmed. If one therapist isn’t right, find the one who is. Trust your gut. Above all, don’t ever for one minute get caught in the trap of feeling awkward because your child is different. Yes, they are different, but they are not less. They will amaze you someday. Right now, amaze them. Be the autism parent you feared you could never be. I thank God for Atticus, my little autism warrior, every day, because he’s made me a much better person.

Jeff Deminski can be heard with Bill Doyle on New Jersey 101.5, every weekday, from 2 to 7 p.m. Listen live online here at NJ1015.com or on the NJ1015 app. Follow Jeff on Twitter. Email him at jeff.deminski@townsquaremedia.com. The opinions expressed here are solely those of Jeff Deminski.

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