With approximately one in 150 children being diagnosed with autism (67 children are diagnosed every day), autism is more common than pediatric cancer, juvenile diabetes and Down syndrome combined. And yet, no parents can predict how they will react to the news that their child has autism. The diagnosis may come as a devastating blow or, if parents have been searching long and hard for answers, it may come as somewhat of a relief.
No doubt parents will experience a wide range of emotions, from anger and guilt to overwhelming grief and hopelessness. Every family needs a great deal of support. The most important thing to remember is that the diagnosis is no one’s fault, and there is hope.
The journey faced by a parent of a child with autism is one of the most challenging and life altering experiences anyone could ever imagine. It’s not a journey a parent can take alone. It requires a network of extended family members, friends, neighbors, doctors, therapists, educators and total strangers to reach out and help.
The earlier the intervention begins, the better the outcome. The first few years in a child’s life are critical. Current treatment approaches offer real hope and improvement, and even the possibility of recovery as autism is treatable. This treatment should take a comprehensive integrative approach, consisting of appropriate clinical, educational and biomedical treatments.
The Top Ten Essential Actions for Parents
What follows is a quick summary of the most crucial steps parents of a child with autism should take during the first year following a diagnosis to facilitate a successful journey.
- Understand and accept the diagnosis. You will need to arrive at a deep understanding of the complexities of the disorder and how it may be affecting your child specifically. It is more than a matter of reading about autism spectrum disorders. Actually accepting the diagnosis means moving from the denial stage to acknowledging that “yes, my child has autism. But I can do something about it.” For some parents, acceptance comes quickly. For others, it takes weeks, months or years.
- Document everything, and become informed and well-connected. Being methodical and organized is key to maintaining your sanity during this journey. Also keep the contact information for your network of support organized and accessible.
- Establish your A team. You must assemble a top-notch team of medical, therapeutic and educational specialists to ensure you have the breadth and depth of expertise you need in managing your child’s autism diagnosis. There is no way you can do everything on your own. You should draw on the expertise of your network of specialists to form the most accurate assessment of your child and to identify the treatments that will best meet his or her needs. Members of the team will change over time, but the team will remain essential to your success.
- Take the driver’s seat; oversee the business of recovery. You are the team leader and ultimate decision maker. While you will be relying on specialists, you need to question everything to be sure the steps taken make sense for your child. Do not automatically assume anyone is an all-knowing expert. During this process, you might become more of an expert than some professionals because of the fact that you know your child better than anyone. Use this knowledge to manage your team and your child’s recovery program.
- Recognize your child’s likes, dislikes, strengths and challenges. Get a complete developmental profile of your child from a skilled developmental specialist. This is critical if you and everyone else on the team are to understand the depths of your child’s strengths and challenges. Generally this profile comes from a developmental pediatrician or a pediatric psychiatrist or psychologist.
- Put the proper supports in place. This will be a very long and often exhausting journey. You will be of infinitely greater value to your children and family if you are not falling apart. To maintain your health and sanity, ask for assistance from a support system of family members, friends, community members and professionals. There are many parents in the same situation who can be a great resource and part of that support system. It truly does take a village to raise and nurture a child with autism.
- Know and exercise your legal rights. Federal laws— chiefly the American Disabilities Act (ADA)— and affiliated state laws govern the supports and treatments you can get. If you don’t know and exercise your legal rights, you probably won’t get what you need, such as reimbursement, proper services and adequate schooling. The more legal knowledge you have, the further you will get.
- Obtain key evaluations and reports to get the services you need, and keep them up-to-date. To get the intervention your child requires, your greatest tool is comprehensive, detailed reports from top specialists in the field. These reports should clearly spell out the diagnosis and specifics about the educational program, therapies and support services that best meet your child’s needs.
- Learn which treatments and programs are most appropriate for your child. Many different treatment and educational options are available. To allow you to intelligently select what is most appropriate for your child, you and your team must have a thorough understanding of your child and the various treatments.
- Advocate! When it comes to obtaining treatment and educational services, you are always going to be your child’s best advocate. Assert yourself and ask questions— no one can speak up the way you can. It is critical to learn how to advocate and do it well.