MONROE – One in 88. That’s how many children are diagnosed with autism today.
That number has been rising for years, largely because diagnosis has come a long way, with doctors able to identify the signs of the disorder when children are younger. The younger a child is diagnosed, the easier it is for some families to manage the disorder.
Autism is a spectrum disorder, and no two-children with autism are the same.
There are those with autism who are highly functional and can manage on their own as adults, and there are others who in their teen years still have a hard time speaking and completing simple tasks by themselves.
Because there are so many variables with this disorder, organizations like the Autism Society of North Carolina’s Union County Chapter exist to help parents and children navigate their way through this incredibly complicated world.
“Our main crux is to provide support to families and teachers and individuals on the spectrum,” said Kim Belk, one of the board members of the Union County chapter. “We don’t do research. We’re purely a parent advocate-type support group.”
In the last several years, the chapter has been able to provide grants to area special needs classrooms, grants to families so they could attend a conference or training to learn how to help their child, and scholarships for children for day camps, adaptive sports leagues and more.
And once every quarter, the chapter offers a four-hour support group session for parents that’s done in a workshop setting with speakers, and gives parents a chance to share their concerns, ask questions and find support for some of the issues they might be facing with their children.
Belk explained, that for every parent who’s child is diagnosed with autism, it’s a long journey, and everyone handles it differently.
Belk knows first-hand the challenges a child with autism entails, because her 19-year-old daughter was diagnosed with autism when she was 11.
Her daughter is in high school, and is about to age out of the public school system – but her mental capacity is still that of a 5 year old.
“The toughest thing for me is that I firmly believe you have to have a basis in communication and have some sense of danger and safety and be able to do some basic skills for yourself, and she can’t do that,” Belk said. “The hardest for me is to teach her those skills. For example, she doesn’t bathe herself. I’m not going to be here forever and I’ve exhausted all the ways I know to teach her. That’s been a struggle for me to teach her. I’ve go to get it done and I’m trying to figure out new tactics to figure it out. But she’s not going to obtain, so that’s really hard for me.”
The other issue Belk has had to deal with recently is regression.
“Meaning the skills she’d acquired, she’s lost or won’t display anymore,” Belk explained.
Belk said while there are definitely ways to help children navigate their autism, it’s very much a disorder that can only be managed – not conquered.
Another volunteer with the Autism Society of North Carolina’s Union County Chapter has a 7-year-old son who was diagnosed with autism when he was almost 4, and he doesn’t even know he has it.
This mother wanted to remain anonymous, not because she is ashamed, but because she wants to be the one to tell her son about his diagnosis.
“My son is basically indistinguishable amongst his peers and we didn’t know that would be the case, it just happens to some kids,” she said. “So he doesn’t know. So the struggle we have now is telling him he was diagnosed, and how do we handle it.”
Because her son was diagnosed early, they were able to start work right away to build his skills. Now he’s in a regular second grade classroom, and this week was his last on his individual education program. Next year, when he goes into the third grade, he’ll be 100 percent a part of the regular classroom.
“It just goes to show what a spectrum (autism) is,” she said. “I don’t think he’s cured. There’s no cure. His brain thinks differently than ours. Whether they change the diagnostic criteria or not, he wasn’t misdiagnosed.”
But while the outlook is good for her son now, it hasn’t always been easy.
“We had to basically retrain his brain how to think and one thing they have a hard time comprehending is a higher order of thinking, like making predictions, assumptions, taking others’ perspectives, it’s a very different thing for them and I didn’t think our son would get there,” she said.
And when her son conquers new challenges and reaches new milestone, each event is celebrated.
She said her family has spent “thousands and thousands” of dollars, and countless hours in therapy – as much as 40 hours a week – to get her son to where he is today.
“And to know that we did the right things, we made some mistakes, but my son told me he loved me for the first time on Mother’s Day when he was 4. That’s something you hear … the fact your kid says mommy, for a typical child you relish, but when he has to work so much harder for those same things, it’s just amazing.”
Her son is even able to play baseball.
“It’s just incredible,” she said. “He has to work twice as hard as everyone else and they don’t see it yet. That’s awesome.”
She also has a 4-year-old daughter and she also doesn’t know her brother has autism.
“She hasn’t asked,” she said. “It’s just not been talked about.”
But it will be, eventually, she said.
“Autism is a journey, and now we’re trying to figure it out,” she said. “He’s not asking the questions yet and when he asks the question, then it’ll be time to tell him.”
Karen Baker, co-chair of the Union County chapter has a somewhat similar story.
When her son was young, he was nonverbal, had tantrums, obsessive compulsive behavior, and an extensive list of other behavioral issues. But the first two doctors she took him to did not diagnose him with autism. At around 3 years old, he was finally diagnosed, and for Karen and her husband, it was a relief.
“It empowered us,” Baker said. “We started researching everything we could about autism.”
And that’s when Baker first got involved with the Autism Society of North Carolina.
But things were rough for a while and Baker eventually quit her job to stay at home with her son, whose behavioral problems were still not under control.
But through continued speech therapy and other therapies, and changing his diet, the tantrums began to simmer down.
They also got their son a therapy dog through Project2Heal in Waxhaw and that’s made a big impact as well. Now most people don’t even realize her son has autism, she said.
“Which is a blessing and a curse, especially when trying to get services,” she said. “My son still has some difficulties and I do not say he is cured or recovered, and he will always have challenges that a neuro-typical person would not.”
One thing all three mothers stressed for parents is trusting your gut and pursuing a diagnosis if you feel like something is wrong.
The next support group for the Autism Society of North Carolina’s Union County Chapter is May 19 at 9 a.m. at the Hampton Inn in Monroe. This will be the last one of the school year. The next support group will be in September.
To learn more about the Union County chapter, visit www.unioncounty-autism.com/.
April is Autism Awareness Month and the Union County chapter of the Autism Society of North Carolina hosts its annual Aware Fare fundraiser April 24. Eat out at La Strada Pizza & Pasta in Wesley Chapel, The Coffee Table in Wesley Chapel, Alice Jules Coffee House in Monroe, La Vida Mocha in Monroe, Sprue-Licious Gluten Free Foods in Monroe, Farley’s Pizza in Mineral Springs, Fox’s Pizza in Waxhaw, Boswell’s Sandwich Salvage Co. in Stallings or McAlister’s Deli in Monroe and a small portion of the proceeds will benefit the society’s education opportunities and grants.