Unpacking the Autism Diagnosis
Receiving an autism diagnosis for your child is no doubt an emotionally charged and life-changing event. You may feel surprised, overwhelmed, or relieved by your child’s diagnosis, reactions that are quite natural and understandable for a variety of reasons. Despite the mix of emotions, it’s important to know that life holds many possibilities for your child. Most significantly, there are things you can do. Through informed action and the use of appropriate treatments and interventions, you can enhance the quality of your child’s life long-term.
Although it isn’t possible to accurately predict how much progress your child will make, research has shown that intervention and treatment can improve your child’s development and quality of life. So, allow yourself some time to accept your child’s diagnosis, but be ready to take action as quickly as possible knowing that your child is still your child, and you will always be the authority on your child—his/her personality, areas of strength and difficulty, and likes and dislikes. Your family has a journey ahead, and every day is an opportunity for you to positively impact his or her prognosis.
Some parents have a more difficult time than others accepting their child’s diagnosis. In some cases, this may be due to a lack of understanding of what autism is, how it is caused, and what it means for their child’s future. On one hand, an autism label may be something that some families prefer to avoid entirely. On the other, an autism label can help validate and put a name to the developmental delays that some families have long suspected.
We often recommend a shift in focus from the label of autism to treating the symptoms that initially raised the concern. Of primary importance is that the child’s intervention team and parents work to improve the child’s communication and social interaction and reduce problem behaviors. Next, parents can identify other symptoms and developmental milestones (e.g., dressing, toileting) that can be targeted directly with intervention. Approaching autism in this way keeps the focus on addressing those areas that interfere with your child’s learning and development, and allows you to remain solution-oriented.
Another reason that some parents struggle to accept their child’s diagnosis is that autism places all of their hopes and dreams for their child in question. An autism diagnosis, though, does not mean that parents should give up on those hopes and dreams. Rather, we urge parents to use them to further inspire them in their efforts to help their child. Interestingly, when asked what it is that they want most for their child, parents of children with and without autism respond similarly: they want their child to be healthy, have friends, secure any needed supports, and most importantly, be happy. Although raising a child with autism will be challenging at times, such aspirations for your child are achievable, particularly with strong family support. With autism you are not running a sprint, but rather a marathon with many bumps and hurdles along the way. The best thing that you can do following a diagnosis is to get started.
Your Life as Your Child’s Advocate Begins
While a diagnosis with autism presents a range of emotions and complexities, it also brings clarity and purpose in terms of understanding what is going on with your child. In that light, there are three beneficial aspects.
First, whereas some parents struggle to accept and cope with the label of autism, many identify areas of concern for their child—and often from a young age—without any confirmation of suspected differences in development. Receiving the diagnosis can provide a name for the cluster of symptoms you see, as well as validate your concerns. Once a child is diagnosed, parents can begin to better understand what they are facing and educate themselves about how best to support their child and family. Further, parents may be better equipped to discuss their child with other family members and trusted friends, as well as their child’s teachers and pediatrician.
Second, the diagnosis is a prerequisite for accessing direct and related services. Although differences across state funding agencies exist, the necessary services for children are rarely provided without a diagnosis. Children with autism require high quality, intensive and evidence-based intervention in order to make positive progress, yet the costs of providing intervention are often high. Depending on where you live, funding is available that may assist with or even offset the costs of treatment. Your child’s diagnosis, though, may be the key to accessing this funding.
Finally, your child’s diagnosis with autism begins your expanded parental role as the principal advocate for a child with special needs. Although states and local education agencies provide funding for services (in addition to what is covered by TRICARE), budgets are often tight and there are almost always more families in need than there are resources available. Unfortunately, you cannot expect to be contacted by service agencies after the diagnosis and provided a menu of options for your child, nor can you expect that all the services that your child and family need will be accessible. The responsibility for taking the first action step—and likely several more—will in all likelihood rest with you. It is critical that you become fluent in essential, trustworthy information about autism and understand your child’s and family’s needs, as well as the services available so that you can make informed decisions about your child’s course of treatment.
One of the greatest challenges following your child’s diagnosis will be sifting through the vast array of information about autism and treatment options. There are a multitude of autism resources, and it is often very difficult to distinguish between reputable and questionable sources of information. In academic parallels, autism has just placed you in a graduate level course for which your prior education has little or no bearing. What’s at stake, however, is not academic. Your child’s and family’s lives are truly in the balance. The information and supports that you, your child, and your family need are available; it will be up to you to find them.
As you begin this process, you are sure to find conflicting opinions (and sometimes high emotions) about the best methods or treatment to use. You will be able to find evidence of efficacy in the form of documented research studies that are published in reputable scientific journals. If you are researching a potential treatment and you cannot find a mention of that kind of evidence, you should be suspicious. Some sources are excellent; others less so. This website will arm you with the resources and tools you need to be an informed advocate for your child.
Downloadable Tool: How to Be an Informed Consumer of Information