Why We Waited 7 Years for an Autism Diagnosis

The long journey to a diagnosis

While Vaughn was what some might consider colicky, Christine says he began to display more and more concerning behaviors as he got older. For example, the only way he’d fall asleep was if he was sitting nudged in the corner of his crib.

“We could never get him to lay down to go to sleep in his crib. I tried putting a pillow in there and I even tried sleeping with him in the crib,” says Christine. “Nothing worked, so we’d let him fall asleep sitting up in the corner, then bring him into our bed after a few hours.”

However, when Christine explained the issue to her son’s pediatrician, he brushed it off and recommended a neck X-ray to make sure his neck wasn’t being affected from his sleeping position. “I was annoyed, because I knew Vaughn didn’t have an anatomical issue. The doctor missed the point. He wasn’t listening to anything I said,” says Christine.

A friend who had a child with sensory issues recommended that Christine read the book, “The Out-of-Sync Child.”

“I hadn’t heard about sensory complications before, and I didn’t know what that meant, but when I read the book, a lot of it made sense,” explains Christine.

Learning about sensory seeking prompted Christine to visit a developmental pediatrician when Vaughn was 2 years old. The doctor diagnosed him with several developmental disorders, including sensory modulation disorder, expressive language disorder, oppositional defiant disorder, and attention deficit hyperactivity disorder (ADHD).

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“They were keeping them all separate diagnoses instead of calling it autism spectrum disorder, which they refused to diagnose him with,” says Christine. “At one point, we thought we might even have to move to another state eventually because, without an autism diagnosis, we’d never get certain services, such as respite care, if we ever needed it.”

Around the same time, Christine had Vaughn tested for early intervention services, which are available to kids in Illinois in public schools starting at age 3. Vaughn qualified. He received occupational therapy, speech therapy, and behavioral intervention, services which continued through first grade.

“His school was great with all of this. He was receiving 90 minutes of speech a week because he has significant challenges with language,” she says. “Still, I wasn’t sure where he stood with the sensory issues, and the school personnel aren’t allowed to tell you if they think he’s autistic.”

The fact that he needed structure and extra services just to function made getting a diagnosis imperative. Eventually, Christine reached out to Autism Society of Illinois and applied to behavioral analysis service Total Spectrum Care to tell them about Vaughn. Both organizations agreed that his symptoms resonated with autism.

In summer of 2016, Vaughn’s developmental pediatrician recommended that he receive behavioral therapy every weekend for 12 weeks at a local hospital. During the sessions, they began assessing him. By November, Vaughn was finally able to get in to see a child psychiatrist, who believed he was on the autism spectrum.

A few months later, just after his 7th birthday, Vaughn was officially diagnosed with autism.

Christine says that an official autism diagnosis has helped — and will help — their family in a number of ways:

1. As parents, they can be certain

While Vaughn received services before his diagnosis, Christine says the diagnosis validates all their efforts. “I want him to have a home and us to have a home within the autism spectrum, rather than wandering around wondering what is wrong with him,” Christine says. “Even though we knew all this stuff was going on, the diagnosis automatically gives you more patience, more understanding, and more relief.”

2. Our son can be certain

Christine says that being officially diagnosed will hopefully have a positive impact on Vaughn’s own self-esteem. “Keeping his issues under one umbrella may make it less confusing for him to understand his own behavior,” she says.

3. His care can be more organized

Christine is also hopeful that the diagnosis will bring about a sense of unity when it comes to his medical care. Vaughn’s hospital incorporates child psychiatrists and psychologists, developmental pediatricians, and behavioral health and speech therapists into one treatment plan. “It’ll be smoother and more efficient for him to get all the care he needs,” she says.

4. They can bond as a family

Christine’s other children, who are 12 and 15 years old, are affected by Vaughn’s condition, too. “They can’t have other kids over, we can’t eat as a family sometimes, everything has to be so controlled and in order,” she explains. With the diagnosis, they can attend sibling workshops at a local hospital, where they can learn coping strategies, and tools to understand and connect with Vaughn. Christine and her husband can also attend workshops for parents of autistic children, and the whole family can access family therapy sessions as well.

“The more knowledge and education we have, the better it is for us all,” she says. “My other kids know Vaughn’s struggles, but they are at tough ages, dealing with their own struggles … so any help they can get with coping in our unique situation can’t hurt.”

5. There is more compassion and understanding

When kids have autism, ADHD, or other developmental disorders, they can be labeled as “bad kids” or their parents thought of as “bad parents,” says Christine. “Neither is true. Vaughn is sensory seeking, so he may hug a kid and accidentally knock him over. It’s hard for people to understand why he would have done that if they don’t know the whole picture.”

This extends to social outings too. “Now, I can tell people he has autism rather than ADHD or sensory issues. When people hear autism, there’s more understanding, not that I think that’s right, but it’s just the way it is,” Christine says, adding that she doesn’t want to use the diagnosis as an excuse for his behavior, but rather as an explanation people can relate to.

6. And more support in school

Christine says Vaughn wouldn’t be where he is today without the medication and support he has gotten, both inside and out of school. However, she began to realize that when he moved on to a new school, he’d receive less support and less structure.

“He will move onto a new school next year, and there was already talk about taking things away, like cutting his speech from 90 minutes to 60, and aides at art, recess, and gym,” she says.

“Not having services for gym and recess is not good for him or other students. When there’s a bat or hockey stick, if he gets unregulated, he could hurt somebody. He’s athletic and strong. I’m hopeful that the autism diagnosis will help the school make decisions based on the parameters of autism, and therefore allow him to keep some of these services as is.”

7. He can get wider insurance coverage

Christine says her insurance company has an entire department dedicated to autism coverage. “This isn’t the case for all disabilities, but autism has so many supports and is valued as something that can be covered,” she says. For instance, Vaughn’s hospital doesn’t cover behavioral therapy without an autism diagnosis. “I tried three years ago. When I told Vaughn’s doctor that I thought Vaughn could really benefit from behavioral therapy, he said it was only for people with autism,” Christine says. “Now with the diagnosis, I should get coverage for him to see the behavioral therapist at that hospital.”

“I wish we would have received the diagnosis four years ago. All the signs were there. He lit the futon on fire in our basement because a lighter was left out. We have latches on all on our doors to keep him from running outside. He’s broken two of our televisions. We have no glass anywhere in the house,” says Christine.

“When he gets unregulated, he gets hyper, and sometimes unsafe, but he’s also loving and the sweetest boy,” says Christine. “He deserves the opportunity to express that part of him as often as possible.”