According to the Centers for Disease Control (CDC), autism affects 1 in 88 children, and hundreds of families are receiving news of an autism diagnosis every day. Autism is a developmental disability that significantly affects three areas: communication (verbal and nonverbal), social interaction, and behavior. It is a spectrum disorder, meaning it affects "each person in different ways and can range from very mild to severe," the CDC notes.
Many autism and medical groups advocate for early intervention and intensive therapy to help achieve maximum progress and recovery for a child with autism. They also advise gathering a team of doctors to assess the best treatment. But when you're sitting in an office hearing the word "autism," the immediate days that follow can be overwhelming, and it can be difficult to figure out what comes next. What should parents do in those first few days and weeks after receiving the diagnosis? What treatment should they seek? How do they find good doctors? How should they cope and move forward? Here are practical and helpful ways parents can come to terms with the diagnosis and devise a plan of action.
When parents hear a doctor's diagnosis of autism, it can be the worst news to receive. Pamela J. Compart, M.D., a developmental pediatrician with HeartLight Healing Arts in Columbia, MD, stresses getting a diagnosis from the right people: "There's no slam dunk to diagnosis. Some kids are diagnosed through the school system and not through a professional, but your child should see a developmental pediatrician or a neurologist with an interest in autism." Dr. Compart advises that children gets a hearing test because neurological hearing loss can seem like autism.
Autism has no known cure -- no surgery, medicine, or therapy. There is no typical path of treatment that works for all children with autism, but there is treatment, says Dr. Compart. Before any treatment can be discussed, parents have to get past absorbing the news. "Even if you thought your child has autism, it's different when you hear the word. In the doctor's office, you'll hear lots of things, but you may forget them. You have permission to call your doctor back."
Receiving news about any difficult diagnosis is difficult. A thousand questions race through the mind: What does it mean to have a child with autism? What will the future hold? Can the child make strides and live a normal life? What should a parent do to help their child? First, parents must deal with feelings of grief about the diagnosis. "Your life has changed in that moment and nothing [bad] will happen to your child if you wait a week or however long it takes to get your bearings," says Dr. Compart.
"Some parents do better by diving into research and looking for ways to help their child, but I've found that most need to grieve for what they thought was their child's future. It's not that they can't help their child have that future, but the journey will be different." Dr. Compart suggests that parents talk to each other and figure out what they will tell the family, but be prepared for unexpected reactions. "You can't shift from grief to hope immediately. You have to go to the worst-case scenario and come back up." Although autism awareness has risen extensively in the past several years, there is still uncertainty surrounding it.
The one thing parents must do quickly is see autism specialists and pursue further testing and evaluations, but getting the help of educational services usually means being put on waiting lists. Every state has early interventional services (often for children ages 3 and under) as well as special education (often referred to as exceptional education). Procuring these services takes time, as does getting appointments. Lisa Goring, Vice President of Family Services for Autism Speaks, says getting on waiting lists is something families should pursue even while they go through the grieving process.
"Those first days, even if you take just 20 minutes to get the process started, it helps. Some families say they never knew it would take so long to get into certain programs or see certain doctors." Goring suggests looking up local or state autism organizations in the area and contacting them to find out which doctors are recommended and which services should be pursued first. "Sometimes taking that first bit of action to get your child on the right waiting lists is the what parents need to do to help them process," Goring says.Become Familiar with Your Child's Rights
The terminology and information about the rights of a child with autism can be overwhelming. You have to learn a whole new language of laws and terms such as IEP (individualized education program), LRE (least restrictive environment), EI (early intervention), IDEA (Individuals with Disabilities Education Act), and FAPE (Free Appropriate Public Education). The sooner parents and caregivers familiarize themselves with these terms and the rights, the sooner they can become their child's toughest and best advocate.
The family services team of Autism Speaks, under the Goring's guidance, recently updated its "100 Days" kit, which provides guidelines on how parents can get through their first few months after receiving the diagnosis. A section about legal rights provides a good starting point for understanding special education services. Talk to other parents of children with autism to get more information. "Parents' support groups sharing experience and knowledge with each other is one of the most powerful things out there," explains Asma Sadiq, M.D., Director of the Division of Child Development at Beth Israel Deaconess Medical Center in New York. Dr. Sadiq offers information to her patients about a parents' support group to join or consult for key hands-on practical information.