Should I Get Diagnosed?

This is a super personal question, there is honestly no right or wrong answer to it. If you’re here, then you probably have been through a lot of reading and basically come to the conclusion that you feel like Autism is probably the right answer for you.

You’ve likely seen the statistics on how girls who aren’t don’t need more support go under diagnosed by the system. The research was done primarily with boys, and all of the data was biased toward boys and how they present. It’s not exactly hard to make it to teens or adulthood as a lady without a diagnosis.

For many, the self diagnosis is really enough, it answers the questions they always had about themselves. They read the stories, they feel like they finally found their soul sisters and they suddenly had this massive weight they didn’t even know they were carrying pulled off of their shoulders. The relief is enough because they finally know that they aren’t alone and that other people feel the way they feel and see the world the way that they see the world.

There’s also likely some anxiety that they will be dismissed, experts will see them make some eye contact and just go “well, eye contact happened, not autistic, have a nice day” (and honestly, that might happen). It doesn’t mean that your journey is over. Get a second opinion, or a third. Research for better specialists, ask your general practitioner for better specialists.

For others, the official paper that says “yes, I do have this thing” is important. For me, it is important. It was important for me to get it for my daughter. I wanted to have the “yes, it’s true, I really can’t handle this unless I have X to help me out” or “no, my daughter can’t do this situation the same way as the rest of her class, but if you let her take breaks in a quiet room she’ll be able to handle it”. For my daughter, I really wanted her to know throughout her life that she isn’t broken, she is just different.

When I approached my daughter’s pediatrician about getting my daughter assessed for autism, we had the general conversation about why I believed she is autistic and then I told him that I know that girls have a very hard time getting an accurate diagnosis and I wanted him to recommend to me not just any specialist but I wanted him to recommend to me specialists that he knows have previously worked with girls who were on the “higher end” of the spectrum. Specialists who had worked with girls who present similarly to my daughter. I specifically told him that I was not interested in approaching this through the school district because I wanted to reduce the likelihood of getting the older school of thought of autism only presents this way because of research in boys.

Her pediatrician printed out the normal list and he went through each of the referrals that the office can make and he circled three or four, but when he got to a specific name on that list, he said “this one, she recently did a fantastic write up for another one of my patients who is very similar in behavior to your daughter”. And she was fantastic. Utilize your resources as much as you can and be clear that you know there is a struggle in diagnosis for girls and women and that you want to try and limit the search for specialists that understand that there is a struggle for girls and women. Leverage your doctors and psychologists if they are on your side to help you in this search as much as you can.

In my opinion, there is no harm that can come from a diagnosis, only benefits that can come. But there is no need to disclose your diagnosis to anyone unless you want to after you get it.

Of course, all of this is assuming that you have ready access to decent healthcare and professionals who are caught up with the times and won’t need to hop through multiple professionals and/or travel extremely far in order to find an adult autism specialist.