As we near the one-year mark since my son’s autism diagnosis, I reflect on the incredible growth we’ve experienced together. I now embrace my role as a proud mom of a unique little boy who approaches life on his own terms. He’s autistic, wonderful, and embodies all the qualities of childhood.
A year ago, I felt lost and overwhelmed. The word “autism” was daunting, filled with uncertainties that left me anxious about my capabilities as a parent. When a compassionate doctor delivered the news that my child met the criteria for an autism spectrum disorder, panic set in. How could I support him effectively?
After weeks of grappling with my emotions and absorbing a mountain of information, I shifted my perspective. Rather than viewing my son’s neurology as a challenge to be fixed, I began to see it as a beautiful puzzle. My role is to observe as he connects the pieces.
To gain insight into this intricate picture, I turned to an invaluable source: autistic adults. While medical professionals provide essential information about autism’s scientific aspects and therapeutic options, the lived experiences of those on the spectrum offer a deeper understanding. The internet has made it easy to connect with autistic individuals willing to share their stories, and I’ve found that when I listen, they often provide clarity in my moments of confusion.
It’s crucial to acknowledge that educating parents like me is not their responsibility. Yet, many of these individuals generously share their insights, aiming to foster understanding and acceptance of autism. Here are some key lessons I’ve learned from listening:
1. Identity First Language Matters
Many autistic adults express a preference for “autistic person” rather than “person with autism.” One individual explained that referring to her as a person with autism implies it’s something separate from her identity. For my son, I’ve chosen to use identity-first language, but I remain open to his preferences as he grows.
2. Voices of Experience in Therapy and Intervention
Autistic adults have strong opinions about various therapies and interventions. While I won’t dictate what’s best for my child, seeking input from those who have experienced these approaches can be enlightening. You might discover unexpected insights about what has been beneficial or detrimental.
3. Cure is Not the Goal
Many autistic individuals do not seek a cure for their neurology. One adult candidly shared, “What I wish neurotypical people knew is that changing our neurology is impossible. We just want acceptance, not to be treated harshly.” Understanding this perspective is vital; anyone promising a cure likely has ulterior motives and should be approached with skepticism.
4. Presuming Competence
This means believing in your child’s ability to accomplish tasks with proper support. For instance, if shoe-tying is challenging, consider alternatives like slip-ons or Velcro. It’s crucial to avoid letting a child fail just to encourage growth; this approach can be harmful and counterproductive.
5. Non-speaking Does Not Mean Non-understanding
I learned from a woman who didn’t speak until she was over six years old that she understood everything around her long before she could verbally communicate. It’s essential to recognize that a lack of spoken language doesn’t equate to a lack of comprehension.
6. Addressing Ableist Ideas
It’s natural to feel embarrassed about using ableist language or concepts. Instead of arguing, seek guidance on how to improve your language and understanding. This reflects personal growth and respect for the autistic community.
7. Diversity in Autism
Autism manifests differently in each individual. For instance, some may mimic social behaviors so well that they’re not diagnosed until adulthood. Autistic people can be found in various professions, and their experiences are as unique as they are. Avoid making assumptions based on a diagnosis.
8. Community and Expertise
While connecting with other parents is valuable, I’ve come to realize that my experiences with my son don’t qualify me to speak for all autistic individuals. I’ve become an expert in my child’s needs, but the voices of autistic adults are the most informative and crucial to my understanding.
For parents navigating a recent diagnosis, seeking perspectives from autistic individuals is invaluable. Take a moment to breathe, trust yourself, and have faith in your child. Autism may present challenges, but it also opens doors to remarkable opportunities for growth and connection. Remember, love and understanding will guide you both as you journey through this together.
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Summary
Listening to autistic adults has profoundly shaped my understanding of my son’s autism. Their insights have illuminated various aspects of autism, from identity language to the importance of presuming competence and recognizing diversity within the spectrum. Embracing these lessons has empowered me to parent with confidence and compassion.