Living with Autism

     There are many profound events in life that must be personally experienced to be fully understood, and having a special-needs child is one of these. This idea, that you’ll never really get it until it happens to you, is not meant to garner pity or notoriety; it is a simple statement of fact. Unless you have a special-needs child, you may never be able to grasp how all-pervading, how constant autism is in a family.

     Having an autistic child simplifies your life as, by necessity, the entire family is forced to surrender its former way of life. You are left with little more than the basics of life. These become your cherished luxuries. Chief among these luxuries is time.

     While routine is the backbone of day-to-day life, there is no such thing as following a set, rigid schedule because you have so little control over what occurs from one minute to the next. Eating a meal has to follow a set routine, but even this seemingly simple task has unseen complications. A typical child may finish his or her lunch in a matter of minutes, but a child like Matty, who has so many sensory issues, takes several minutes just to get himself mentally, physically, and emotionally prepared to eat. Matty receives heavy work, such as jumping on the trampoline or swinging on his platform swing, just to gain some sense of where his body is in space so that he can try to sit at the table. He needs oral-motor exercises, such as using the Z-Vibe (a vibrating tool used for sensory integration), to help him locate his mouth with his fork. Once he is seated, Matty continues to need attention: prompts to use his fork, reminders to stay in his seat (a near impossibility for a child with Matty’s issues), reinforcement to return to the table after he inevitably gets up and wanders away between forkfuls. If Matty tries a new food, it is cause for rejoicing, but it will almost certainly be accompanied by gagging that draws the meal out even further. This array of details describes a meal that goes relatively smoothly. If something in Matty’s environment triggers a meltdown, it’s anybody’s guess how long the meal will take or if Matty will eat anything. So a relatively simple task, something that takes the typical child a matter of minutes, often takes Matty close to an hour. Further, Matty is not an only child; he has two younger sisters who deserve attention and time, but sometimes have to go without one or both briefly because Matty requires so much of our attention and our time. Now consider the other tasks that make up a child’s day, begin adding up the extra time, and you will begin to get some sense of the constant nature of autism. Autism does not influence your reality; autism is your reality. Given this, the concept of “free time” is either farcical or foreign to many parents with autistic children. “Free time” is often the twenty-minute window that starts when the last of our kids has fallen asleep and before we ourselves nod off.

     Most people we encounter, particularly our family and friends, are as understanding as they can be, but trying to explain this chaos to someone who doesn’t live it every hour of every day is nearly impossible. Everything that comes naturally to typical children has to be taught to Matty, and it must be taught repetitively. Everything takes longer and is paced much more slowly.

     There are only 24 hours a day to act as therapist, teacher, and parent to Matty. Juggling all of these roles constantly is stressful, and when the stress is compounded with a lack of regular sleep, it leads to a lifestyle that is very different from the average. Raising any child is difficult, but the daily challenges that become a reality for raising a child with autism can become overwhelming. We fortunately have a wonderful support system with our family and friends. One of the best tools we have come across to help family and friends get a sense of the reality of autism is the video “Autism Every Day,” which is available on the internet at www.autismspeaks.org. If you really want to see what it is like, watch this video. Again, we are not looking for pity, but we do want to try to help people to become more aware of what it is really like to live with a young child affected with autism. We don’t want to sugarcoat it, and as we said in our first column, while living with autism is often an ordeal, there are also many happy moments filled with love and laughter.

     Sonja and Sean Nunan
     Matty’s parents

Matty, age 5

Autism Fact:  

1 in every 104 boys is on the autism spectrum.  

"Autism Every Day" Video