As we near the one-year mark since my son’s autism diagnosis, I’ve transformed into a confident and proud mother of an extraordinary little boy. He’s shown me that he will achieve his goals—just in his unique way. He is autistic, amazing, and embodies all that a young child should be.
Reflecting on the anxiety I felt upon receiving the diagnosis, I remember the overwhelming fear of my own ignorance. I was completely unprepared for the complexities of autism. When a compassionate doctor gently informed me that my child qualified for an autism spectrum disorder diagnosis, panic set in. How could I fulfill his needs as a mother?
It took me some time to process the emotional whirlwind. I felt compelled to absorb vast amounts of information, which left me feeling inundated. Eventually, I shifted my perspective. Instead of viewing my son’s neurology as a challenge to be solved, I began to appreciate his mind as a beautiful puzzle, where every piece is significant. All I needed to do was observe how he puts the picture together.
To grasp the nuances of this intricate puzzle, I focused on learning from the most insightful experts available to parents like me: autistic adults. While medical professionals can provide scientific insights and recommendations, the lived experiences of those on the spectrum offer invaluable perspectives. In today’s digital age, it’s easier than ever to connect with individuals across the spectrum who are willing to share their journeys. I’ve discovered that many autistic adults graciously engage with parents like me, guiding us through uncertain situations.
It’s essential to acknowledge that educating parents is not their responsibility. Nevertheless, many choose to share their insights and promote autism acceptance. Here are some key lessons I’ve gleaned from listening to them:
- Identity First Language is Preferred by Many Autistic Adults. Most individuals I’ve spoken with favor being described as “autistic” rather than as “a person with autism.” This preference is significant because, as one individual articulated, “Autism isn’t something I carry; it’s part of who I am.” I’ve adopted identity first language for my son, and if he ever expresses a desire for a different approach, I will respect his wishes.
- The Perspectives of Autistic Adults on Therapy are Crucial. I won’t dictate what therapies to pursue for your child, as every family makes their own decisions. However, it’s beneficial to consult autistic adults about the therapies that have been helpful or harmful to them. The insights they provide can illuminate effective approaches that may surprise you.
- Desire for a Cure is Not Universal. Many autistic individuals, like Jenna B., assert that they do not wish to change their neurology. Instead, they seek understanding and acceptance. It’s important to recognize that anyone claiming to offer a miraculous cure is likely promoting dangerous and ineffective remedies. Instead of focusing on a cure, consider embracing your child’s unique traits.
- Presume Competence and Create Opportunities for Success. This means believing in your child’s ability to accomplish tasks if you collaborate to make them manageable. For instance, if tying shoes proves difficult, consider alternatives like slip-ons or Velcro. As Ainsley T. emphasizes, allowing a child to struggle unnecessarily is both ineffective and unkind.
- Non-speaking Does Not Equal Lack of Understanding. I recently learned from a woman who was non-speaking until age six that she comprehended her surroundings long before she could articulate words. Just because an autistic person does not use spoken language does not mean they lack comprehension.
- Addressing Ableist Language and Ideas is Important. It’s crucial to be mindful of the language we use and the thoughts we have regarding autism. If someone points out that your language is hurtful, take it as an opportunity to learn and grow.
- Recognize the Diversity of Experiences Among Autistic Individuals. Autism manifests differently in everyone—some may mask their symptoms so well that they aren’t diagnosed until adulthood. Intelligence levels vary widely, and autistic individuals can excel in numerous fields, maintain rich relationships, and lead fulfilling lives, just like neurotypical individuals.
- Parents are Not Experts on Autism. My experience with my son has taught me that while I can share insights from our journey, I am not an authority on autism itself. Engaging with autistic adults provides the most relevant and insightful perspectives.
For those navigating a recent diagnosis, seeking perspectives from autistic individuals is vital. Remember to breathe and trust in your ability to support your child. While autism may introduce challenges, it will also unveil opportunities for remarkable growth and connection. You may feel lost now, but your love for your child has always been there.
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Summary
Understanding autism through the experiences of autistic adults can provide invaluable insights for parents. Embracing identity-first language, respecting diverse perspectives on therapy, and recognizing the unique nature of each autistic individual are essential. As parents, we should focus on fostering understanding and acceptance while supporting our children’s unique journeys.
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