Autism is a complex neurodevelopmental condition. Although autism can be reliably diagnosed as early as 18 months of age, many families struggle with accessing early evaluation services which can delay access to treatment services for their children. The process of accessing and receiving an autism diagnosis can be stressful. Families may question whether they are seeking the correct support and may face differing opinions from professionals, friends, and family members.
Additionally, given the complexity of autism, many autistic individuals are experiencing more than just the core features of autism. They may experience behavioral or psychiatric co-occuring conditions, medical conditions such as feeding challenges or sleep challenges, or developmental delays above and beyond their social differences. This complexity can add to the stress and tension that families may experience adjusting to a new diagnosis. Navigating medical and behavioral services as well as educational services can feel overwhelming. If you are experiencing these emotions, know that you are not alone.
Fortunately, research has identified strategies that can help families feel empowered and enhance resilience in navigating service systems and day-to-day activities. Seeking out professional support, especially from someone with autism experience, can help mitigate those feelings of stress and increase your competence to care for your child and your family. Research has also supported the benefits of connecting with other families who have a child with autism.
When thinking about empowerment, the goal is to support resilience through connectedness, competence, and care for yourself and for others. So, where to start?
To enhance connectedness, remember to communicate with those you love. It’s ok to have differing opinions from your partner, your relatives, and even the professionals with whom you are working. What helps is to acknowledge those differences and to talk openly about them. It can also be helpful to take time to spend with those you love, even if it’s a few minutes each day. This can be especially important in supporting siblings, as each sibling will benefit from one-on-one time with their parent.
Increasing competence can help you feel more prepared when navigating services, community resources, and educational resources. Learning about autism can feel overwhelming, as there is so much information out there and so many different perspectives and presentations. Accessing research-based resources can be a great way to increase competence and knowledge on topics that are important for your family. There are a variety of free evidence-based resources available, and several of them are linked at the end of this blog!
Finally, taking time to care for yourself is going to help you feel strong and ready to take on the day. The idea of self-care can feel overwhelming to some, “How am I supposed to add in something just for me!?” but doing so will have positive effects on everyone in the family. Self-care can be as small as taking a minute during the day to breathe deeply, sit in a quiet space, or drink a cup of coffee while it is still hot. What I encourage you to do is to identify those small moments throughout the day when you can take time for yourself, do something you enjoy, and take time for physical movement. Over time, you may find that you are able to increase those opportunities and even engage others in those activities that you love and find invigorating!
Remember, you are not alone in navigating this journey. Finding opportunities for connectedness, competence, and care can help support your resilience and empower you to be just what your child needs!
Autism Internet Modules https://autisminternetmodules.org/
Autism Distance Education Parent Training https://health.ucdavis.edu/mindinstitute/centers/cedd/adept.html
Autism Speaks Toolkits https://www.autismspeaks.org/tool-kit
Organization for Autism Research Resources https://researchautism.org/families/guidebook-series/
Autism Society of American and local chapters https://autismsociety.org/
Free to Be Who You Are: Autism Treatment through a Neurodiversity Lens
The Importance of Joint Attention in Early Intervention for Autism
A Tale of Two Spectrums: Understanding Gender and Autism