Description
Fall 2009 SODBP Newsletter
Adjusting to the Reality of the Diagnosis:
Autism Spectrum Disorders
By Nancy D. Wiseman
No one can predict how any parent will react to hearing the news that their child has autism. The diagnosis may come as a devastating blow or, if they have been searching long and hard for answers, it may come as somewhat of a relief. No doubt they will experience a wide range of emotions, ranging from anger and guilt to overwhelming grief and hopelessness. Every family needs a great deal of support from their pediatrician. The most important thing to remember is that the diagnosis is not their fault, and there is hope. Autism can be very responsive to therapeutic, educational, and medical treatments and the earlier the better.
The parent journey is one of the most challenging and life altering experiences anyone could ever imagine. It’s not a journey they can take alone. It requires a network of extended family members, friends, neighbors, doctors, therapists, educators, and total strangers to reach out and help. As a pediatrician, you are vital to the success of every parent journey.
The Top Ten Most Essential Actions for Parents
Below is a quick summary of the most essential steps parents should take to ensure a more successful journey1:
1. 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 it. “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, acceptance comes quickly, while for others, it takes weeks, months, or even years.
2. Document everything; become informed and well-connected. With all the accumulating paperwork—reports, invoices, notes, test results, letters, insurance forms, and educational plans—you will soon begin to feel as if a few good-sized trees have moved into your home. Every one of these documents should be at your fingertips when you need them, so learn to document and organize everything, either electronically or into 3-ring binders or expandable files. Being methodical and organized is key to maintaining your sanity during this journey.
3. 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. There is no way you can do this all on your own. You should draw on the expertise of all these 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 be crucial to your success.
4. Take the driver’s seat: manage your child’s treatment plan. You are the team leader and the ultimate decision maker. So while you will be relying on specialists, you still 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. You may find during this process that you become more expert than some professionals if for no other reason than the fact that you know your child better than anyone. You have to manage your child’s treatment program. You will have competent professionals on your team, but you and only you can manage that team.
5. Know your child—his 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. Typically this profile will come from a developmental pediatrician or a pediatric psychiatrist or psychologist.
1 Adapted from Nancy D. Wiseman, The First Year: Autism Spectrum Disorders: An Essential Guide for the Newly Diagnosed Child(Cambridge, MA: Da Capo Press, 2009).
6. 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 your sanity, you are going to need help 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 of assistance at this time. It really does “take a village” to raise and support a child with autism.
7. Know and exercise your legal rights. Federal laws—chiefly the American Disabilities Act (ADA)—and supporting state laws govern the supports and treatments you can get. If you don’t know and exercise your legal rights, you will probably not get what you need (reimbursement, proper services, schooling, etc.). The more legal knowledge you have, the further you will get.
8. Obtain key evaluations and reports to get the services you need, and keep them up-to-date. To get the intervention your child needs, your greatest tool will be 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.
9. Learn which treatments and programs are most appropriate for your child. Many different treatment and educational options are available. So you can intelligently select what is most appropriate for your child, you and your team must have a thorough understanding of your child and have a thorough understanding of the treatments.
10. Advocate! When it comes to obtaining treatment and educational services, you are always going to be your child’s best advocate. Don’t be afraid to be assertive and keep asking questions—no one can speak up for her the way you can. It is important that you learn how to advocate and how to do it well.
Biography
Nancy D. Wiseman is the founder and president of First Signs, a national nonprofit organization whose mission is to educate professionals and parents about the early warning signs of autism and related disorders. She is the author of Could It Be Autism? A Parent’s Guide to the First Signs and Next Steps (Broadway Books, 2006) and The First Year: Autism Spectrum Disorders: An Essential Guide for the Newly Diagnosed Child (Da Capo Press, 2009). Nancy is the 2006 recipient of the AAP Dale Richmond/Justin Coleman Award for her outstanding achievement in the field of child development.
Keywords:
Publication date: Dec 11, 2009
Revise date: Dec 11, 2009
TextID: 694
