Advocacy Children's Health

Everything That Comes With Living With Autism

It’s time to get ready for school, and John’s already had a meltdown because his green shorts are in the washing machine. You patiently redirect to a green shirt with khaki shorts and green socks. Breakfast was easy at least: Cheerios and sliced apples, and he even took a bite of the turkey sausage you made. Then you remember that today his classroom is going to have a special demonstration with birds and other wildlife. So you take a break from packing lunch to sit down and walk through what’s going to happen. “John,” you say, sitting next to him while he stares at his plate, “today some cool birds and animals are going to come visit your classroom. Your teacher is going to ask you guys to sit in a circle on the floor. What do you do?”

You walk through what’s going to happen and praise him every time he gets it, and gently correct when he doesn’t. At the end, he flashes a quick smile, and your heart swells. After you drop him off, you click through everything on your to-do list: First, work, then get off early to take a meeting at school—you want to talk to his teacher about some other learning strategies you worked out with John’s psychologist—then it’s speech therapy day. After that, you’ll work with John on his homework and try some of the new behavior management tools your psychologist also shared, since 4 p.m. meltdowns have been happening almost every day. Then dinner, the nightly bath and tooth brushing battle, and the sweetest time of all: snuggling up in bed to read John’s favorite books. Once he’s asleep, you take some time to clean up, watch a few minutes of TV, then it’s time for your book and bedtime before it all starts up again tomorrow.

“Living with autism does have major stresses,” said Dr. Alex Mabe, a pediatric psychologist at the Children’s Hospital of Georgia. “The biggest one, initially, is determining the diagnosis and finding a specialist trained in autism who can work with you on language, social interaction and behavioral management.”

One thing we know is that the child with autism who gets early developmental intervention—such as family training, speech therapy, physical therapy, nutrition services and hearing impairment services—often does much better socially, physically and academically. “It would be terrific if we could determine a diagnosis as early as age 2 or 3 and start interventions,” said Mabe. “The sooner, the better.”

Then comes everything else.

1. School. “School systems in general are not well designed for children with autism, staff may not have much training and programs can be limited,” said Mabe. It can even be difficult for parents of a child with autism to obtain an IEP, or Individualized Education Program—“but that is absolutely essential for helping a child with autism go through the school system,” said Mabe.

It’s important that parents know their child’s rights to receive an education. Parents also need to learn how to advocate effectively for their child, knowing that sometimes it can be a battle to get teachers on board and understand how to teach their child most effectively. National autism organizations often offer parent-to-parent support groups that can provide a great sounding board for how to work with schools, and Dr. Michael Ellis, a father of a child with autism, also has written a book, Caring for Autism, that offers great practical tips for helping parents navigate the world of a child with autism.

While many young adults with autism continue to live with parents and enter rehab programs, some colleges do have special programs designed for young adults with autism. Make sure to seek those out if appropriate, and use your advocacy skills and seek a lawyer’s advice to secure government support in the form of a supplemental income for your child.

2. Mood, social and behavioral management skills. A therapist will work on teaching these to a child with autism. But it’s just as important for parents to listen and learn these skills too, said Mabe, so they can help teach and reinforce at home, too. For example, parents can learn to use techniques like listening to music, cuddling up in a blanket or getting something to eat or drink to help a child calm down when they’re upset.

Many families also have children with autism who are lower-functioning, where they should focus on working with an Applied Behavioral Analysis therapist on pivotal skills such as eye contact, communication gestures (if they are non-verbal), feeding themselves and being able to calm themselves down.

3. The environment. It’s a tricky balance sometimes to make sure your child’s environment isn’t overstimulating (too loud, too busy or too bright) or isn’t stimulating enough, which can also be distressing to a child.

4. Flexibility training. Children with autism tend to be rigid in their thinking and have a hard time shifting from one topic, idea or activity to another. So, for example, you might have the child who literally can’t stop talking about Thomas the train, even when it’s not socially appropriate; is fixated on the idea that everyone at school “hates him”; or has a meltdown anytime a schedule changes. To teach your child flexibility, start with small changes, like gradually expanding the conversation to trains in general; focusing on how a certain way of thinking affects your child (“when you think everyone hates you, is that working for you? Is there a better way to think?”); and making small schedule changes and preparing your child for a change.

With all of the above and more, it’s very true that the parent of a child with autism needs both attention to detail and a whole lot of patience. “Parents also need a good support system; otherwise they just wear out,” said Mabe.

Success can look different depending on each child, but for the most part, it means being able to establish meaningful communications, to be cooperative and to work with others—and for some, it can also mean graduating from high school, attending college, getting a job and living independently. Again, every child is different, but “early intervention can make a big difference to achieving those goals,” said Mabe.

Take the next step

The Children’s Hospital of Georgia has one of the area’s largest child and adolescent psychiatry and psychology programs, with specialists who can evaluate and treat children with autism spectrum disorder. To schedule an appointment, call 706-721-6597.


About the author

Children's Hospital of Georgia

Children’s Hospital of Georgia is the only facility in the area dedicated exclusively to children. It staffs the largest team of pediatric specialists in the region who deliver out- and in- patient care for everything from common childhood illnesses to life-threatening conditions like heart disorders, cancer and neurological diseases.