Challenges of Living with an Autistic Child

Autism -- a disease that has no cure and whose symptoms can range from mild to severely debilitating. Burlington, Vermont filmmaker Anne Barbano, whose 9-year old son Nicholas was diagnosed with autism when he was 4, says, "It's like having a prescription, but no one can fill it."

Experts estimate that three to six children out of every 1,000 will have autism. Males are four times more likely to have it than females. Some experts say autism can be helped by developmental pediatricians, child psychiatrists, along with setting up sessions for your child with speech-language pathologists, occupational therapists, physical therapists, and others. However, most parents on a limited income say this kind of treatment comes at a prohibitively high cost.

Every state has publicly funded programs for children with developmental delays, and autism is included in that category. You can get a referral from your pediatrician. Such programs typically provide speech, occupational, physical, and behavioral therapy, as well as a special education teacher. But not all parents think these programs are good enough.

A huge problem for parents of just-diagnosed autistic children is money. Very often, the publicly funded services are not at a level that parents think is necessary. And then, because medical insurance usually doesn't cover certain kinds of therapies, parents often wind up paying large sums out-of-pocket. A 2007 study on the financial impact of autism published in the Journal of Family and Economic Issues by co-author Deanna Sharpe, PhD, CFP, found parents that were paying as much as $30,000 per year for these therapies. Take, for example, applied behaviorial analysis therapy, in which an autistic child is taught how to speak or do simple tasks, can cost his or her parents up to $100,000 a year. Some resourceful parents have decided to undergo special training so that they can teach their autistic children themselves. Others resort to home schooling.

Another challenge for families dealing with an autistic child is that the situation can put stress on the marriage relationship and on the child's siblings. Experts warn not to focus too much on the autistic child and exclude everything else in the family. Couples are encouraged to devote some time to their marriage. They are also advised not to talk about autism all the time, that taking some breaks from it will serve you well, since it's not going to go away. Siblings often feel left on the sidelines while the autistic child takes center stages. And while some are able to interact and play with him or her, others feel sad that they don't have a "normal" sibling.

Experts advise that parents network with others in the same situation. A good resource is The Autism Society of America web site, which has a listing of local chapters that offer groups for families and separate groups for siblings.

As an autistic child becomes an adolescent, and then a teenager, a whole new set of challenges come up. While these include the normal issues every parent of a teenager faces, they are complicated by the autism. Autistic teenagers can have difficulty communicating with their peers, but at the same time, they usually feel the need to pull away from their parents. This can leave them with no one at all to talk to. They also have the issue of raging hormones, but often the inability to understand or appropriately manage sexual behaviors.

For most children, the teenage years are a time for them to develop their social, sensitivity and awareness skills. They become preoccupied with acne, popularity, grades, and dates and teenagers with autism are likely to become painfully aware that they are different from their peers. They may notice that they don't have many or any friends and that they aren't dating or planning for a career. For some, these feelings of not fitting in will motivate them to learn more social skills to better fit in, for others it often means they retreat into themselves even more. Psychologists say the autistic teen's increased aggressive behavior may be one way some teens express their newfound tension and confusion.

Some autistic teenagers, if they are good at reading and math, will be able to get into a college or university that will work with their disabilities and enable them to get a degree.

Armed with a degree, some adults with autism will be able to work successfully in regular, mainstream jobs. But they may run into communication and social problems which may cut into their success. Others with adult autism will be capable of working in sheltered workshops, like factory plants, supermarkets or department stores, under the supervision of managers who are trained to work with persons with disabilities.

According to Wikipedia, there is a raging debate going on within the autism community, led by the Autism Rights Movement to stop calling autism, a disease, and allow autistics to "embrace their neurodiversity". The group advises society to accept autistics as they are and not try to change them. They say society should learn how to tolerate some harmless behaviors characteristic of autism, like tics and circling, like hand flapping or humming. They encourage society to be more accepting of these behaviors than they are now.