Coping With Autism

DISCLAIMER – The Autism Resource Foundation provides general information to the autism community. The information comes from a variety of sources, and the Autism Resource Foundation does not independently verify any of it, nor does it necessarily reflect the views and/or opinions of the Autism Resource Foundation. Nothing on this website should be construed as medical advice. Always consult your doctor regarding the needs of your family.

Autism Speaks / Cure Autism Now (CAN)
Coping

It's not easy to hear the news that your child has autism, and realize that your life will be utterly different than you had expected it to be. Daily life with a special-needs child presents many unique challenges. How do you come to terms with the fact that your child has autism? How do you cope once you get over the initial shock? We aim to help you by providing regular features on topics ranging from how autism affects your family to day-to-day survival strategies. Please be sure to check in with us often.
 
Coming to Terms with the Diagnosis
No matter how well-prepared you thought you were after months spent worrying about your child's development, and seemingly endless visits with specialists, hearing that your child has autism is usually devastating. Many parents and psychologists describe the diagnosis as a kind of “death.” As Sharon Rosenbloom writes in Souls: Beneath and Beyond Autism, “With the diagnosis of autism, the dream dies.” While of course your child is very much alive, the feeling of loss is nonetheless very real for most parents and families. In many ways, the diagnosis of autism represents the death of both your idealized child and your life as you imagined it would be, full of soccer games and school plays, ballet classes and sleepovers. The diagnosis leaves you facing something entirely new and unknown, and it can feel very scary indeed.

What to Expect
You will most likely experience a wide range of emotions. These may range from shock, anger, and resentment, to fear, worry, and profound sadness. Some parents may feel guilt, while others may actually feel some relief at finally having a diagnosis. One minute you may feel like screaming, and the next minute all you want to do is cry. Each person displays his or her own range and intensity of emotions. Still, you may go through something similar to that of others who suffer a great loss:

• Shock: You may feel confused or frightened, or you may find yourself in denial, questioning the diagnosis or searching for another doctor who will tell you something different.
• Profound sadness or grief: As the shock subsides, these feelings may engulf you as you mourn the loss of your idealized baby.
• Anger: With time, your grief may turn into anger toward your child, your spouse, or whoever may be close at hand. You may also feel resentment toward other parents with healthy children.
• Acceptance: Ultimately, you begin to accept your child's diagnosis and the changes that living with autism brings.
  

This can be a very challenging time. The main thing to remember is that all of these emotions you're feeling are normal. Be patient with yourself. It can be a long time before you are able to feel a sense of acceptance about your child's disability. But most parents who have been through this already will assure you that eventually that time does come.

Help Yourself Adjust
In the meantime, there are some strategies that can help you. Psychologist Judith Grossman, of the Ackerman Institute in New York City, recommends a preventionist approach. In other words, don't let yourself fall apart. While you may be on an emotional roller-coaster ride, your child needs you now more than ever.

• Give yourself time to heal. You may need to take time off from work while you are grieving. Let yourself cry, scream, or anything else that helps you release your emotions.
• Write in a journal. Louise DeSalvo, in Writing as a Way of Healing, notes that studies have shown that “writing that describes traumatic events and our deepest thoughts and feelings about them . . . is linked with improved immune function, improved emotional and physical health,” and positive behavioral changes.
• Begin treatment for your child immediately. Bryna Siegel, in The World of the Autistic Child, writes that “starting with treatment is the best way to work through the acceptance of the diagnosis. . . . The sooner the treatment begins, the sooner there will be some positive change in the child and the parents can begin to see that the child's situation is not hopeless.”
• Talk about your feelings. Discussions with someone you trust, whether a partner, friend, family member, or religious leader, can be a tremendous relief.
• Learn facts about autism. With information, you will feel more capable to make the right decisions for your child. Take care not to become overwhelmed, though. You don't need to solve all your child's problems at once.
• Maintain daily routines.Routines bring order to family life at a time when it may feel chaotic and overwhelming.
• Join a support group. Find other parents who understand what you're going through and can give you advice and direct you to resources. Don't let yourself become isolated.
• Do something for yourself every day.Gardening, exercise, art, prayer, anything that makes you feel good.
• Don't forget to appreciate your child's gifts. Don't let the word “autism” cloud your feelings toward your child. This is the same little person you loved and appreciated before the diagnosis
• Get help when necessary. Following the above strategies should help keep you from falling apart. However, if you do find yourself so overwhelmed that you are unable to function or care for your child or children, consider seeing a trained psychotherapist who can help you work through your difficult emotions.

MSNBC Article
Coping With Autism - Families Connect To Deal With The Diagnosis

When Lisa and Alan Bryant of Dothan, Ala., had their son Jarrett, he was such an easy-going, low-maintenance baby that by the time he was 2 years old, Lisa had given birth to another son, Jacob. Then the family’s world changed drastically. Jarrett, now 7, had been diagnosed with autism.

“We knew nothing about autism except what we’d seen in the movie ‘Rain Man’ and of course it’s nothing like that,” Lisa Bryant says. As a toddler, Jarrett became unresponsive. He didn’t babble or talk, he didn’t hug or cuddle, he didn’t play with his toys or other children and he didn’t respond to pain. “One day he got out into the backyard and we found him standing in the middle of a bed of ants," says Bryant. "He wasn’t making a sound. It was as if he was totally detached.”

To make matters worse, their younger son was also diagnosed with autism at age 2. “That was just devastating," she says. "Hearing it a second time around was even worse.”

And Jake’s behaviors were even more dangerous. He’d climb on top of furniture and rip wallpaper off the walls.
“With Jake we also got no sleep," she says. "If we could get him to bed, it might be 1 a.m. Or if he went to bed he might get up at 2 a.m. and stay up the rest of the night running around the house.”

With two boys requiring so much care and therapy, Bryant says she and her husband would feel isolated and desperate if not for other parents of children with autism. “Sometimes you feel so alone in this and the only thing that helps is to talk to someone who has been there,” Bryant says.

As the number of cases of autism grows, many parents across the nation are grappling with the stress of the diagnosis and turning to other couples for support. Besides the anxiety and the high demands on parents' time and energy, autism can also take a heavy toll on family finances and put a big strain on relationships.

Reaching out to other parents can literally be a matter of life and death, according to Katherine Robertson, the mother of a daughter with autism and founder of the Northern New York Clinic, an autism treatment center in Watertown, N.Y.

“When people don’t feel like there’s anyone out there like them or anyone to help them they become desperate,” says Robertson. She notes at least two examples of parents who committed murder and suicide because they couldn't deal with the disorder.

'Don't bring that child'
Robertson and others in the field encourage families to seek out one another. Many families can’t count on their relatives, Robertson says. In some cases they even shun them because they don’t understand autism.

“Some [extended] families will say, ‘You come, but don’t bring that child.’ Or they make it known that the child isn’t welcome," she says. "It makes it all that much harder on the parents. So I tell people to look for a group. Call their public-health department or ask teachers, speech therapists and pediatricians.”

Some autism information Web sites also link to state-by-state directories of services and groups.

Parents who have come up empty in their local communities have also started their own groups. In Bryant’s town, she helped kick-start the Autism Support and Encouragement Group, sponsored by Southeast Alabama Medical Center. “We put ‘encouragement’ in there because you desperately need encouragement when you’re facing this,” says Bryant. Other parents have started local support groups — some for just parents of children with autism and some for parents of a variety of special-needs children.

Michelle Pappadia of Ellicott City, Md., has three children affected by autism. She started a gluten-free, casein-free diet support group by advertising in her elementary school newsletter. The diet is something she believes has helped her children enormously. In the diet support group, which now boasts 120 chapters nationwide, members swap recipes and tips. But Pappadia says all pertinent support groups are worth investigating.

“I tell everyone to either join a support group or start one,” says Pappadia. “I’ve joined almost all of the support groups I’ve heard of. Some have moms’ nights out and include all moms of children with disabilities. The best thing is that you don’t feel like you’re the only one going through this. You leave feeling really good. But you can also find suitable babysitters and lots of other resources through these groups.”

Help on the Web
To most parents of children with autism, online support has also become critical. There are online chats and hundreds of message boards devoted to family exchanges. Bryant found her doctor by going online to a regular Tuesday night chat group of parents (several of whom are also health care professionals).

Many message boards and chats offer support and encouragement but the practical advice is just as useful, according to Bryant. “You can get tips on how to handle certain behaviors or ask other parents if their children had weird reactions to certain medications.” You can even talk with others about the impact autism is having on your marriage or other children.

The Internet has also become a place for families of kids with autism to organize and flex their muscle, which is another type of coping strategy, points out Laura Bono, who has a 15-year-old son with autism and is a spokesperson for the National Autism Association.

“Some of my friends feel better if they can go to a support group and cry and talk about how hard it is. We feel better if we can fight to make a change,” says Bono. NAA families stay in touch via the computer and convene occasionally for conferences and political rallies.

Indeed, parent-based groups are responsible for successfully lobbying the government for an additional $50 million in funding for autism research and treatment, according to Dr. Sarah Spence, director of UCLA’s Center for Autism Research and Treatment. Her facility is one that has benefited from family activism.

“You hear a lot about families that fall apart because of something like autism,” says Spence. “But [in my work] I have to say I’ve been in awe of the families who figure out ways to cope and seem to come together. They all help each other get through this. It’s pretty incredible. It’s an honor to be in their presence.” 
Bryant says it’s true: “Believe it or not, this experience can bring you closer.”