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Having a child with autism: 21 things I wish I'd known

Parents and loved ones of children with autism share what they wish they'd known earlier.
/ Source: TODAY

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.

TODAY Parents spoke to numerous moms, dads 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, Manchester, Tennesseee

Sarah McKamey and son Micah.Sarah McKamey

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

“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, Lambertville, New Jersey

Laura Jones and family.Biker Ballerina

3. It won't always be like this

"During the hardest times, when my son wasn’t sleeping or eating or when he melted down over lights and sounds, I wish I knew it wouldn’t always be like this. I wish someone would have told me that the child I have now will grow and change and regress and thrive. You will feel frozen in time at different points. Know that it will get better. And harder. It will change."

Kate Swenson, Minnesota

Kate Swenson's three sons
Kate Swenson's oldest son Cooper has autism. He's pictured here with his two younger brothers.Courtesy of Kate Swenson

4. 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, West Virginia

5. Find other parents who will understand and support you

"It always has been invaluable to have other parents who are going through the same thing as you are, to call them up and say I can’t believe this is happening to me today. Because to the rest of the community, the things that happen to us, they’re really not the norm."

Ruth Singer Strunck, the mom of two young adults with autism

6. It's OK to be sad about your child's autism diagnosis

"I get really sad when I think of the 'normal' childhood my kids have missed. I have no tolerance for parents who complain about having to drive their kids to ballet and soccer and all of their other activities. I wanted to be that mom, and I always envisioned my life would be that way. But now I realize how blessed I am to avoid dealing with drinking, drugs, promiscuousness, social-media bullying and all the other typical teenager problems."

—Alicia Hardigree, Greenville, South Carolina

Alicia Hardigree is pictured with her daughter, Ally.
Alicia Hardigree is pictured with her daughter, Ally. "Autism will humble you and make you a better person," Hardigree said.Courtesy of Alicia Hardigree

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

7. 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 1,000 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, Great Barrington, Massachusetts

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

8. 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, Port Washington, New York

Nicole Sugrue and son Adem.Nicole Sugrue

9. 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 8 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, Lake Ariel, Pennsylvania

10. Try not to read too much into things people say to you

"You will find yourself annoyed with positive comments because they seem to minimize the magnitude of your child’s challenges. You will also be annoyed by negative comments that don’t recognize the magnitude of your child’s progress."

Lisa Lane, Woodruff, South Carolina

Lisa Lane with her son, Colby, who has autism.
"An autism diagnosis will change every aspect of your life, from the way you relate to religion to the way you select your salad dressing," said Lisa Lane, pictured here with her son, Colby. "You can lose yourself in autism, but you can also find yourself."Courtesy of Lisa Lane

11. The hardest parts of autism are often unseen by the outside world

"My daughter can appear to be 'fine' at a party, but later that night will likely be a nightmare. I think this is what can make autism so very lonely. It is a war fought mostly behind closed doors."

Lacy Gunter, Greenwood, South Carolina

Lacy Gunter's daughter, Hannah
"Autism does not define my daughter," Lacy Gunter said of her daughter, Hannah, pictured here. "I have learned to separate Hannah from her autism. Hannah is loving and kind and has unbelievable comedic timing. I adore her!"Courtesy of Lacy Gunter

12. 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, Jacksonville, Arkansas

13. 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 OK 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, Knoxville, Tennessee

RELATED ESSAY: I know what causes autism

14. 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, Los Angeles

Grayden Grossman with his parents.Steven Grossman

15. Autism does not equal a lack of empathy

"We need to eradicate the idea that people on the spectrum are unfeeling and consider that perhaps some of the behaviors we don’t understand are because they in fact feel more than those of us who are not on the spectrum."

—Lauren Casper, Lexington, Virginia

16. Your child with autism may bring out the best in your family

"Our son is the oldest of our three children, and he has taught us all the importance of kindness, patience, compassion, listening and respect. These attributes allow our family to keep a very grounded and real perspective on what is truly important in life vs. what is fleeting, frivolous or simply not worthy of our energy."

Stephanie Martin, Greenville, South Carolina

Stephanie Martin with her family
Stephanie Martin is pictured with her family. "Whether it is in the doctor's office, the classroom, or at the state house," Martin said, "we the parents have to educate and advocate on behalf of our child."Courtesy of Stephanie Martin

17. Having a child on the spectrum can be like a reboot to your life

"It's exciting and challenging because each day holds a new adventure. Despite the challenges of having a child on the spectrum, my life is perfectly complete. My son challenges me to be a better parent every single day."

—Yolanda Holmes, Greenville, South Carolina

Yolanda Holmes with her son
Yolanda Holmes is pictured with her son. "Celebrate the successes because that's what will get you through the hard times," Holmes said.Courtesy Yolanda Holmes

18. Remember to live your own life and take care of yourself

"Take up yoga. Kiss your husband. Create beautiful bowls out of clay. Do whatever it is that lights you up inside — all the things that made you feel whole, and alive, and good before autism darkened your doorstep."

Carrie Cariello, Bedford, New Hampshire

19. Four legs and fur may change your child's world and give you hope

"We were on an endless search for that one thing that was going to make the difference for our son ... and then we adopted Xena, a severely abused and neglected puppy. The moment my son and Xena met, there was an immediate and undeniable bond. He spoke freely to her; he sang to her; he played with her. They were inseparable. We spent years and thousands of dollars on therapy hoping to accomplish what this dog was able to attain instantly. My son finally had a relationship where there was no judgment or expectations placed on him, but there was a friendship that allowed him to let it all go, open up and be himself. I am not saying that all families living with autism should have a dog, but I will say that miracles do come true, and your miracle may be at your local shelter waiting for you."

Linda Hickey, Johns Creek, Georgia

Linda Hickey's son Jonny has autism. He's pictured here with his beloved rescue dog, Xena.
Linda Hickey's son Jonny has autism. He's pictured here with his beloved rescue dog, Xena.Courtesy of Linda Hickey

20. This is a great time to parent a child with autism

"I am grateful that we live in the times that we do. So much new information has been discovered about autism. We live in the age of the internet and I can connect with another autism mom who lives several states or even countries over and talk about our shared experiences. I am grateful to have things like iPads that not only help my son communicate but also gives us a chance to share a moment while watching one of his favorite YouTube clips. A tip of my cap to the families that went before us. They really helped pave the way for the benefits my son has now. I hope I can do the same for the ones coming behind us."

Eileen Shaklee, Wall, New Jersey

Eileen Shaklee is pictured with her son, who has autism.
Eileen Shaklee is pictured with her son, who has autism. "My child has taught to me to look at everything with a new perspective," Shaklee said.Courtesy of Eileen Shaklee

RELATED: The stuff they don't talk about during Autism Awareness Month

21. Your journey may be different, but your goal is the same

"What we want for our children is the same thing that everybody else wants for their kids. It may take them a little longer to get that, it may take us more intervention, but in the end health and happiness is what everyone wants for their children."

Ruth Singer Strunck, the mom of two young adults with autism

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