REACTING TO THE DIAGNOSIS
Even before an evaluation, some parents have a feeling that their child has autism. Other parents have no idea, and the diagnosis can be very unexpected. Either way when your child is diagnosed you may feel a range of emotions. For example, you may feel:
All of your feelings are valid. Give yourself time to process your feelings. Getting therapy and finding a support network can help you work through your emotions. At the same time, remember that you have the same unique child you did before the diagnosis. You just have more information about the way your child thinks, processes and experiences the world. Just because your child can or cannot do certain things right now does not mean they never will. Autistic people follow their own path and reach milestones at their own pace. The best thing you can do is continue loving and supporting your child, meeting them where they are, and finding the therapies and supports that will enable them to learn and grow.
Reacting to the diagnosis
No matter how you may feel about the diagnosis, concerns that many parents share are similar:
- Worrying about your child’s future
- Not knowing what to expect
- Feeling like you don’t know how to help
Your child needs you. You are the best person to provide them with the help, support and love they need. You don’t have to know everything about autism to be the person who knows your child best. Even if you don’t feel qualified, or you know nothing about autism, you can do this. It won’t always be easy, but there is a whole community of parents and people with autism who have walked this path.
If you find that sadness is interfering with your daily life or you have other symptoms of depression, consult your health care provider who can recommend treatment. These symptoms might include:
- Weight loss or gain
- Social withdrawal
- Sleep difficulties
- Low self-esteem
- Loss of interest in daily activities
While emotions vary across parents and family members, some might experience sadness at first. The time after an autism diagnosis can be challenging for all families.
Autism is a complex disorder. It will not only change the way that you look at your child, it will change the way you look at the world. Accepting the diagnosis simply means that you are ready to advocate for your child.
Parents, siblings and other family members may each react to the diagnosis in different ways and at different rates. Give yourself time to adjust. Be patient. It will take some time to understand your child’s autism and how you can best support them.
Keep in mind that having a child with autism will also help inspire you and provide you with a new outlook on life. As all parents do, you will teach your child life lessons, both big and small. But as your child grows, you will also learn equally valuable lessons from them, like the importance of understanding and acceptance of all people, regardless of their differences.
Stages of autism
Dr. Stephen Shore, a professor of special education and Autism Speaks board member on the autism spectrum, talks about four stages of autism that lead toward meaningful and rewarding lives for individuals with autism. Every stage involves multiple steps, and everyone advances at their own pace.
Stage 1. Awareness You’re already in this stage as you’re reading this tool kit and becoming aware of your child’s diagnosis. For many years, advocacy groups have made big pushes for autism awareness. More than a decade later, many groups have felt they successfully achieved this stage by promoting awareness in many ways. By increasing awareness of autism spectrum disorder and the many different manifestations of this condition, there have been more conversations on the subject. This awareness has resulted in many autism diagnoses for those who were under diagnosed or even misdiagnosed over the years.
Stage 2. Acceptance Many organizations also strive to promote autism acceptance. This involves caring for autistic individuals in all their strengths and challenges and not trying to make a person into someone they are not. Acceptance also involves a respect for the differences that autism brings into the lives of everyone involved, as well as the full spectrum of autism. An important aspect of this stage is working with the characteristics of the autistic person rather than against.
Stage 3. Appreciation When working on appreciation, we can look at the gifts of those on the spectrum and moments others may never understand the significance of. How many people really take the time to cherish every day, appreciate our support networks, and look at our own resilience and the value of how far we have come? Our children with autism one day may go on to college, live by themselves or find their dream job after years of hard work and support. These are moments we appreciate more than others may ever understand. Autistic people are valued for who we are and the contributions we make to society.
Stage 4. Action This stage glues together the work done in the previous three, where we actively work with a person’s strengths and interests to help them live a life they want to have. Everyone has different goals in life, and a child’s goals may change as they grow up. Let’s put those skills and supports to use as we take action to help promote self-determination, self-advocacy, as well as making fulfilling and productive lives for autistic individuals the rule rather than the exception.