Things I Wish I knew

Things I wish I'd known about having a child with autism

There's a saying that's often repeated because it's true: If you've met one person with autism, you've met one person with autism. That's because children (and adults) on the autism spectrum are very different from one another. There is no one correct road map to follow when raising, teaching and loving them.

April is Autism Awareness Month, and TODAY spoke to numerous parents and loved ones about what they have learned — and would like to tell others — on their particular autism journeys.

1. Don’t worry about what other people are thinking

“The most freeing moment of this journey for us was when we stopped worrying about public appearance. Your child needs for you to be 100 percent in tune with them and what they are experiencing, not worried about how you are perceived.”

—Sarah McKamey, son Micah, 9, Manchester, Tenn

Sarah McKamey
Sarah McKamey and son Micah.

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2. When it comes to autism, one size doesn’t fit all

“I wish I knew that autism is not the disease — ignorance is. If you put a PlayStation game into an Xbox would it work? Of course not. So does that mean the Xbox is broken? No. The same thing applies for a child with autism. Just because they don’t learn the way ‘typical’ children do doesn’t mean there is something wrong with them. It means that we as parents, caregivers, friends, neighbors and teachers need to find different ways to try and make a connection.”

—Laura Jones, children Kate 12, Jack 11, Maxx 9, Lambertville, N.J.

Biker Ballerina
Laura Jones and family.

3. Know that medical issues can be involved

“I wish I had known about the invisible medical issues of autism right from the start. For years, I had no idea that gastrointestinal dysfunction, including constipation, acid reflux, inflammation and pain, could dramatically affect my son’s sleep patterns, mood, irritability, aggression, attention, and even communication. Our son had to power through those problems all by himself on a daily basis, and it breaks my heart that we never suspected the cause of many of his struggles.”

—Janet Lintala, son Evan, 22, West Virginia

RELATED: The moment one father realized the problem wasn't his son's autism

4. Be grateful for the strong connection you and your child will forge

“In reflecting over the last 24 years of our journey, I will say this: My son gives me 100 kisses and hugs every day, he is always happy to see me and he will always be with me. He doesn’t lie and he doesn’t judge. He is welcoming to anyone that wants to enter his world. On the other hand, my father sees me about twice a year since we live 1000 miles apart. So which dad is better off? It’s not better or worse, it’s just different. Once you understand that, your road will be smoother.”

—Scott Sanes, son Jache, 24, Great Barrington, Mass.

Scott Sanes
Scott Sanes says his son, Jache, shown, gives him 100 kisses and hugs a day.

5. Prioritize independence and communication

“After baseline medical needs are met and you figure out how to deal with the ‘everyday,’ I recommend that parents pay particular attention to the areas of communication, self-help and socially appropriate skills. A child who has a high academic ability, but poor communication skills, hygiene or a proclivity to hurt others will greatly limit their opportunities.”

—Nicole Sugrue, son Adem, 19, Port Washington, N.Y.

RELATED: Why a video of a boy zipping up his jacket is so powerful for many parents

Nicole Sugrue
Nicole Sugrue and son Adem.

6. Trust your instincts even with the doctor’s advice

“What I wish I knew way back then is that it’s OK to get a second opinion when your gut tells you the doctor is wrong. We knew that Gavin had autism. Yet, we were told he had ADHD, that he had anxiety and depression. It took his first psychiatric hospitalization at age eight for a psychiatrist to finally say he thought Gavin had Asperger’s. We were always told, ‘Why is a diagnosis so important to you anyway? It’s just a label.’ Because the right diagnosis means the proper treatment. Now he has a job, he’s involved in school activities. He’s going to college in the fall to become a chemistry teacher.”

—Shannon Smyth, son Gavin Nelson, 18, Lake Ariel, Penn.

7. Seek out a mentor

“Looking back, it would have been helpful to have had a mentor or someone who had already walked the road that I faced. Initially, the diagnosis was overwhelming. Just as a driver on a road trip stops at visitor centers for information, I found myself searching for directions on how to not only cope with the future as his primary caregiver, but also how to fund his immediate and future medical expenses and care. My experiences have instilled in me a desire to mentor those with whom I come in contact who are facing the future I faced.”

—Lisa Bamburg, son Joel 20, Jacksonville, Ark.

8. Watch for depression signs in older children and young adults

“While it’s a good thing to integrate your autistic child into a regular school system, be aware that most autistic children that can be integrated are fully aware that they are autistic and as they become teenagers and into their twenties that awareness of being different can lead to depression. My brother went into the system at a young age and even graduated from college. Even highly intelligent children on the spectrum have difficulty finding their place in the world. It’s not talked about very often, but it’s a very important thing to bring more awareness to.”

—Tanya Ryno, 47, brother, 24, Alpine, N.J. and Maine

RELATED: I know what causes autism

9. When you change your expectations, the world will grow

“I wish we knew that autism just means different, not less. Instead of baseball games in elementary school we would have sensory integration programs. I wish we knew then that it will be okay some days will be hard, some days will be beautiful and at the end of each of them when we tuck our son into bed, the most important thing we can do is make sure he knows he is loved.”

—Tabatha and Tony Rainwater, son Junior, 5, Knoxville, Tenn.

Steven Grossman
Grayden Grossman with his parents.

10. Celebrate all of your child’s achievements

“I wish I had known that unlike other parents we can’t take even the smallest achievement or milestone for granted. When our son started wearing his coat without a fight and expressed that he was cold, when he was able to participate in circle time during music class and when he got up on stage with the other kids at his school show we celebrated.”

—Steven Grossman, son Grayden, 6, Los Angeles, Calif.

RELATED: Autism mamas, raise your hand

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