03/04/2016 08:14AM ● Published by Aimee Cormier
An Autism Diagnosis Is Just The Beginning
By Amanda Jean Harris / Submitted Photos
It was more than a dozen years ago when I wrote my first story about autism. The young boy’s name was Isaiah. More than once in describing the premise of the piece I recall having to say, “no, he’s not artistic. It’s autism. He’s autistic.” And then they would ask about Rain Man.
The fundamental understanding of autism has changed dramatically. Mainstream television shows feature families facing life with an autism diagnosis. Insurance coverage has expanded for therapies. Awareness is growing. And yet, there is much left to be understood. Just as autism is a complex thing with a spectrum that ranges dramatically, so is each child who is diagnosed. And perhaps that is the last frontier in the world of autism awareness — understanding that no two children can ever be labeled the same.
“The autism spectrum is extremely varied,” says Melissa Stevenson, who is the mother of a son, Beckett, diagnosed with autism. “There are people on the spectrum who may have an incredibly advanced vocabulary, while there are others who are nonverbal and cannot communicate with speech at all. Some are hypersensitive to certain sounds and smells, or don’t like to touch certain textures, or are extremely picky eaters.
“Then there are people that are hyposensitive and crave more sensory input, she continues. “For example, they may be constantly on the move, like loud noises and love roughhousing. The hypersensitive child may avoid things like finger paint and mud puddles, where the hyposensitive child may paint his entire body with it. My son may or may not have done that before. There is a saying that goes, ‘If you’ve met one person with autism, you’ve met one person with autism.’ They’re all different.”
Being “different” is often the first indicator that something is amiss. Sometimes it’s clear. Some diagnoses are obvious and some signs, however, are far subtler. The average age of diagnosis for a disorder on the autism spectrum in the United States is 4 years old. A common misunderstanding is that a diagnosis isn’t even an option until the age of 2 because of the nature of developmental milestones. In other words, people have thought that until certain milestones aren’t met a child won’t be diagnosed. Parents like Emily Wolf know this isn’t true.
“We were in therapy at 7 months because there were so many sensory issues,” Wolf says.
Her son, Seth, wouldn’t eat and had issues with food textures. One therapist actually mentioned autism before he was even one year old.
“I was like ‘He’s a baby!’ but she saw the red flags with sensory issues and delays,” Wolf says.
At 22 months of age, they headed to a psychologist who gave them an autism diagnosis.
“I didn’t even understand what a sensory issue was. They said he was high functioning at first. Some would say Asperger’s, but I knew he wasn’t because we were more delayed than that. There were certain doctors that called it different things.”
It all added up to autism.
Scratching The Surface
The generic description of autism includes symptoms like “difficulty communicating, difficulty with social interactions, obsessive interests and repetitive behaviors.” But, that only scratches the surface. The spectrum is appropriately named a spectrum to reflect the wide difference between those with a diagnosis — some speak near constantly while others not at all. As Stevenson described earlier, the sensory issues can run the gamut from wanting to shut the world out to craving more of it. Having one indicator of autism that is considered “high functioning” (or low) does not give any reference to other areas. In other words, a child that is entirely nonverbal may function well in other areas.
“If an autistic person cannot talk to you, that does not mean they don’t understand you,” Stevenson says. “Most of the time they certainly do and are listening to every word.”
Speaking The Truth
While the efforts for improvement vary with a child who has autism disorder, perhaps one of the greatest is improved speech and communication. Speech pathologist Marsha LeGoullon says it all comes back to finding ways for children to communicate in a meaningful way — something they each want no matter their ability level in speech. She has been working for a decade with children with autism and sees the full gamut of ability in terms of speech and communication. She points out that knowing words is only a portion of the equation.
Understanding them and true communication is another animal.
“Some children may know a lot of words, but they don’t really use them appropriately or they are reciting things they saw in a movie as practice, but don’t know how to use them in a daily environment,” says the woman at the helm of Pediatric Learning Center. “It’s a challenge for them. They may not know how to sustain an interaction.”
She believes we all have an inherent desire to connect and even in the area of speech, she begins there.
“We have to first figure out what brings out that intrinsic motivation to engage with another person. All kids have the inherent desire to interact. They just have challenges that prohibit them and they withdraw because it’s so difficult,” LeGoullon says.
In the home of the Wolfs, Seth has come far in the area of communication, but faces anxiety and sensory issues that are limiting.
“He’s come so far and now he can tell me things he’s thinking and feeling and express himself very well and his vocabulary has grown,” Wolf says.
He is homeschooled and attends a homeschool school for a few hours a week. Wolf says her son’s sensory issues are as though he can’t filter out anything that comes his way in the environment, which causes his anxiety. For the Stevensons, there are different, but similar challenges.
What We All Want
“When we go out in public, it is very obvious that my son is not ‘typical.’ He may be making noises, or get upset and scream, or be saying the same phrases over and over. It draws lots of unwanted attention and it becomes difficult to go places, so we tend to isolate ourselves,” Stevenson says.
At the foundation, however, Stevenson echoes LeGoullon’s philosophy — we all want the same thing.
“People with autism want the same things we all want. They want to go places, have friends and experience life,” Stevenson says.
Experiencing life is something Emily Wolf wants for her son as well. The key — letting children do that in their own way. For Seth that once looked like creating art from paint and a truck. I first met Emily when her son’s artwork came across my desk for a story. Because of his sensory issues, Seth didn’t want to touch the paint. He would roll a toy truck over the paints and then use that as his “brush.”
“He still loves to paint, but has been painting with his hands and has really blossomed. He works on airplanes with his daddy and on the car. He’s all about tools and how things work. He wants to be an engineer … he’s proud of himself and I’ve stopped trying to force him into a mold that he doesn’t fit. It just damages him. Nothing is wrong or bad or off. This is Seth. And Seth is awesome. It’s the only way unless you want to be depressed.”
Taking A Break
Wolf is not alone in her approach. While milestones and working toward a goal are appropriate, so is taking a break from therapy and navigating intervention as each parent sees fit. Seth has done well with therapy (although they have been out of it for a year now) along with anti-anxiety medication and natural options like essential oils.
“I think no matter what, each child will do things in their own time,” Wolf says. “We will grow as we grow and we take it step-by-step. We don’t lose hope but we don’t force things or make him live in therapy. Everyone has their own unique journey.”
It’s a journey that begins for many people long before an official diagnosis. A nagging feeling that something is different. And it’s something Stevenson says every parent should take note of sooner rather than later.
“My advice for parents after a diagnosis would be: don’t wait it out to see if it gets better,” she says. “Early intervention and therapies can work wonders. Call a professional or the local autism society for guidance.”
LeGoullon says therapy can start early and often — she’s talking newborn age.
“Three months and six months of age even. They don’t need to be 2 years old to be working on this. We are trained to pinpoint symptoms very early on … send a child for an evaluation early and it’s very beneficial.”
While seeking professionals early on is the foundation of helping children, caretakers, too, should take action as soon as their child is diagnosed to form a healthy support network.
“Although it can be difficult, take time for yourself,” Stevenson says. “This is so important. Even if it’s just a little time do something just for you. Also, find a person or a group of people who can relate to what you are going through. Make friends with them and talk to them. You will be surprised at how much this helps. Love and accept your child for who they are, and where they are, and go from there.”
Stevenson says many parents (she and her husband included) isolate themselves because of the unwanted attention that often comes from being in public places. Connecting with understanding families can be a lifeline as parents navigate the world of autism. And it’s something LeGoullon has seen improve significantly in recent years.
“It’s really incredible to see the shift since autism is more of a part of the mainstream conversation. Parents seem to have more support in each other,” she says. “Social media has played a huge part in that, too. Parents we know are now connecting with each other and lending each other support. Social media has support pages dedicated to parents.”
Wolf is part of a Facebook page that has proved invaluable and seeks out parents that can relate to life with autism.
“We have a great group on Facebook. It’s vital and necessary to find other parents who are going through it. When he was a baby, I felt so alone and I didn’t have any support. No one understood it and I blamed myself. Others are going through the same thing and we can support each other. Eight years later after the judgment and the issues we dealt with I have found what feels like a sisterhood. We don’t judge. Without that you would feel so alone.”