Is it Safe to Get an Adult Autism Diagnosis Now?

We talked a bit in some previous blog posts about the benefits of getting an “official” diagnosis vs self-diagnosis, and while some of those points still hold, things have changed in the US drastically over the past few months. So let’s take another look and talk about whether or not getting an autism evaluation and diagnosis are worth it for you right now. 

If you’d like to review what I previously said about the pros and cons of getting an official diagnosis, take a look at this previous blog post. To summarize, the majority of the “cons” were related to logistics. Think about things like the cost and time involved or potential for discrimination. I also talked about more of the pros in this blog post. But, in the wake of so much that has come out of the current administration (specifically many of the things that RFK has been saying), many people are more afraid to seek out an official diagnosis. 

Is it worth it to get an autism diagnosis now?

There’s a lot of understandable fear about many of the things RFK has said about autism and his plans to “cure” autistic people and more that I won’t get into here. For many people, this has been enough to convince them to wait (and there’s nothing wrong with that!). If you’ve been here a while you know that I’m a firm believer in self-diagnosis. Again, you don’t need someone else to tell you what you know is true about yourself. That said, there are people out there who still want to go through the process.

One of the main reasons for pursuing an official diagnosis even with everything happening right now is to know yourself better. I’ve said it many times in the past, and I’ll continue to say it here- autism doesn’t need a cure because we aren’t broken! There’s nothing wrong with being autistic and for many people, just knowing that about themselves helps them see themselves in a different light. So many clients talk about how reassuring it has been to know that they aren’t crazy, difficult, or bad people- they’re just an autistic person who didn’t know that about themselves. But once they have that information, they have words for their experiences and a better understanding of why it’s a struggle (for example) to go to the grocery store. 

Despite believing in self-diagnosis, many people still struggle with feelings of imposter syndrome when it comes to self-diagnosis. Sometimes going through the evaluation process itself can help quiet that voice in your head that says “you’re making this all up.” For others, they may feel comfortable with self-diagnosis, but they have friends and family who don’t believe them and blow them off. These people want the diagnosis to help have “backup” when they talk to friends and family about being autistic. 

How can I know an autism evaluation is safe?

I always recommend asking the evaluator some of the following questions so you can accurately determine the risks involved. 

• Do you take insurance for autism evaluations? 

• Be aware that any time you use insurance for anything, the provider has to put a diagnosis down. This is a large part of the reason many providers (myself included) do not take insurance. If you go through insurance for an evaluation, that diagnosis will be linked to you through your insurance company and can “follow” you other places. I have more information about why many providers don’t take insurance in this blog post. While taking insurance isn’t a bad thing in itself, using insurance for an evaluation can be more risky if you have privacy concerns. 

• Does your medical records system connect to other providers?

• This tends to come up more with providers who are part of a larger system, such as a local hospital group. You may have noticed that when you go to your primary care doctor’s office, they are able to pull up medical records from other doctors, sometimes even from ones that aren’t affiliated with their particular hospital system. Most of the hospital systems here in the greater Charlotte area use My Chart; anything one physician puts into My Chart can be viewed by other physicians you see that use My Chart. 

• Generally speaking, providers in small or solo practice do not have systems that integrate with others that way, but it is definitely worth asking about! The electronic medical system that I use, for example, is made for solo and small practices and does not link with anyone else; the only way for information to be viewed by another provider would be if it is sent directly to them.

• Will you send my information anywhere?

• The answer to this should always be a resounding “no, not unless you specifically ask me to.” I won’t get into the privacy laws and HIPAA here, but your provider can not share your medical information without your prior written consent (with a handful of exceptions, such as immediate danger to yourself or a child being in danger). 

• A lot of folks have asked about reporting to a “registry.” It’s important to keep in mind that as of this writing (10/9/2025) there is no registry, however you would want to know if a provider would comply with such requests (for the record, I definitely would NOT).. 

Ultimately, as with everything, you have to be the one to decide whether it’s worth it or not to seek a diagnosis. If you’d like to talk more about the risks and benefits, or want to go ahead and schedule an adult autism evaluation in North Carolina or South Carolina, click here to schedule a free consult. And if you don’t feel comfortable filling out a form online, you can always send me an email at Leah@ridgelineCAS.com or call or text me at (704) 776-1632 and we can set up a time to talk.