Caregiver’s Guide to Autism Symptoms

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One of the most difficult aspects of being a caregiver for someone with autism – whether a child or an adult – is the inability to understand what it’s really like for them knee. People with autism might have more severe versions of these behaviors.

Many with autism characterize stimming as pleasurable; for some, stimming is a way of coping with a stressful or overwhelming situation. It can also help them concentrate. McGreevy says that her son’s particular habit is to rub the back of his neck – even to the point where it’s raw or bleeding – especially when he’s reading. “I think it somehow helps him focus on the book instead of the 15 other things that are going on around him,” she says.

Compulsive organization. Caregivers are sometimes confused, and awed, by the obsessions and compulsions that people with autism exhibit. “As soon as my son gets home from school — within 15 minutes — he’ll have a hundred toy dinosaurs lined up in a single file in his room,” says McGreevy. “It’s so bizarre and it still astounds me.”

A seemingly compulsive need to organize and arrange objects is a pretty common autism symptom. “We like order,” says Berman. “Some kids arrange items by size, some by the same sequence of colors. They do it the exact same way, day in and day out.” That organization can extend to how they break up their days. People with autism may rigidly adhere to a schedule. If it’s disrupted, they can become distraught.

For a caregiver, accommodating these needs can be difficult. A very minor alteration – a single book put upside down on the shelf, a cabinet door left open, an unexpected day off from school — can trigger panic. But to people with autism, the disruption might feel like much more than it would to you. Seeing that single upside down book might make them feel as if the entire bookcase had been ransacked and its contents scattered.

It’s difficult to say exactly what motivates these obsessions and compulsions. But Shore believes that these autism symptoms are a reaction against the disorder they perceive in the world. “I think it’s another attempt to bring order and sense to an environment that seems chaotic,” says Shore.

Intellectual obsessions. This is another common autism symptom: an exhaustive and staggering knowledge of a particular subject. To outsiders, these interests can seem baffling. And when communication is so difficult already, it can be frustrating when all your loved one wants to talk about are baseball stats or the nuances of the side arms of different Star Wars characters.

Again, it’s important to understand that these obsessions might serve a function. In a confusing world, a specific interest — over which the person with autism has total mastery — can be like an anchor, grounding them. And while these autism symptoms may sometimes be frustrating for a caregiver, they also have a benefit: They offer a way in.

“If you have a child with autism who’s obsessed with SpongeBob, then you had better learn a lot about SpongeBob too,” says Berman, “because that’s how you can talk to him.”

Shore agrees. “I think the best thing for a caregiver is to find out what a child’s interests are and to start interacting through those interests,” says Shore.

How? McGreevy gives one example. When her son gets overwhelmed by a situation, she talks to him about his favorite subjects, animals and dinosaurs. Her effort to connect with him on one of those topics — on his own terms — can really help calm him down.

Autism Caregiving: Treatment Helps

Caregiving for a loved one with autism can be tremendously difficult. But happily, treatment can often make a difference.

“The good thing is that people with autism can learn many of the things that they don’t know intuitively,” says Shore. “It just requires direct instruction.” Skills that neurotypical children learn unconsciously – such as evaluating a social situation or reading a person’s behavior – can be taught, step-by-step.

There are many different approaches to instructing children with autism, including the Applied Behavior Analysis (ABA), the Miller Method, and the Floortime method. Shore says that there is no single best approach. As a caregiver, the key is to be flexible, to try different approaches, and see what works best with your child.

The Importance of the Autism Caregiver

Caregivers also need to understand how important they are. Both Berman and Shore give a lot of credit to their parents for their tenacity and dedication. In the early 1960s, experts told Shore’s parents that their son’s autism symptoms were so severe that his case was hopeless and he needed to be institutionalized. But his parents defied the experts and kept fighting, and they were right.

McGreevy is a passionate advocate for her son too. While she tries to accommodate his autism symptoms and keep a home environment in which he feels safe, she’s also working constantly to expand his horizons. “I think because of his condition, my son would be fine being stagnant,” she tells WebMD. “If he’s going to experience new things and grow and take the next step, I need to push him.”

For a caregiver, empathy is key. Just forcing a person with autism into the “real world” won’t work. Instead, the first step is to try to understand their perspective a little better.

“As a parent or caregiver, you need to go into the world of the person with autism first,” says Shore. “Then you can start guiding that person out.”