Should You Stop Telling People You're Autistic?

Yes, you should stop telling people that you're autistic. The decision to disclose your diagnosis, especially when it seems to be conflicting, is a personal one, but here’s why it’s important:

Do you belt out your weight, cholesterol levels, or health issues as cocktail party conversation starters? No, you don't. Why, then, would you share your mental health information with every curious passerby? It's personal medical information that should remain confidential. Furthermore, if multiple specialists have told you that you do not have autism spectrum disorder (ASD), then it is essential to believe their findings.

Autism spectrum disorder isn't a condition that one can simply grow out of. Either you have it or you don’t. If your diagnosis was given by an extensive panel of specialists as a child and later contradicted by adults, it’s crucial to understand why the diagnoses differ. It’s a complex issue that requires careful consideration and research.

Dealing with Disagreeing Professionals

My youngest was diagnosed with PDD-NOS (Pervasive Developmental Disorder - Not Otherwise Specified) at age 9 by a dedicated autism specialist after extensive testing. However, after moving with her father and returning to me, several specialists have decided that she is not on the spectrum despite no further testing. Even therapists have tried to tell me that she is not on the spectrum without any evidence.

It’s critical to understand the criteria your diagnosis was based on and what those promoting the conflicting opinions are relying on. Don’t take their word for it without proper consultation and testing. This misunderstanding can stem from a lack of knowledge about autism or biases.

Understanding the Spectrum

It used to be that autism was a straightforward diagnosis or a different label like Asperger’s or PDD-NOS. However, the modern term in the DSM V is "autism spectrum disorder," which acknowledges the spectrum's complexity. You can be "somewhat autistic" or have aspects of it that manifest differently.

Multiple specialists disagreeing with one another can suggest that the individual is close to the spectrum threshold. It’s possible that you've adapted to some aspects of autism where you learned to work around weaknesses or better leverage your strengths. Aspects of your life might have changed, causing the autism to become less pronounced.

My own experience mirrored this. As a child, I underwent a series of diagnostic evaluations and was labeled "not autistic." However, as an adult, I was diagnosed with ASD. The diagnosis itself didn’t change my life much but it did provide valuable insights into who I am.

Conclusion

Whether you choose to disclose your diagnosis or not, it's essential to appreciate the complexity of autism diagnoses. If you feel that the information from multiple specialists contradicts your own experiences and instincts, it might be helpful to seek a second opinion from a credible professional. Remember, your personal experience is just as valid as a professional diagnosis, especially when there are conflicting opinions.

Understanding the spectrum and the nuances of diagnosis can help you navigate these challenging conversations and better advocate for yourself. Whether you choose to disclose or not, being informed is the key to making an empowered decision.