Perhaps you've always felt "out of place" — like you didn't belong and the world you live in wasn't designed for you, with all the struggles that come with that. Perhaps someone else, or multiple people, have suggested the possibility that you may be on the autism spectrum. Perhaps your child was recently diagnosed and you realized that you are a lot like them.
Awareness and understanding of autism has increased — not enough, but nonetheless — in recent years. So has access to information, through the internet. A growing number of adults who were undiagnosed or misdiagnosed in childhood are now realizing that they may be autistic. Some of them will have found ways to cope, both with the inherent struggles that can come with autism, such as sensory overload, and the world around them, while others are struggling. Some are content to educate themselves about the spectrum and to make a tentative self-diagnosis.
So, I think I'm autistic: What now?
By the time you seriously suspect that you are autistic, you've probably spent countless hours reading about autism, and there's a good chance you've messed around with the RDOS and Autism-Spectrum Quotient quizzes. (If you haven't, they're in the links section below. Though these tests don't replace a diagnosis in any way, research does show that these quizzes can help predict ASD. They aren't perfect, mind you.)
Adults who suspect they are on the spectrum can approach their family doctor for a referral, or they can independently look for someone who can make the diagnosis. This could be a neurological psychologist or a psychiatrist. It can be helpful to use the internet to look for "autism specialists" near you, but make sure to be on the look-out for those who work with adults — because not all do.
What can you expect from the diagnostic process?
- Because autism spectrum disorder is a lifelong condition that first manifests in childhood, whoever is evaluating you will want to talk to people who were present during your childhood, ideally at least one of your parents. They will ask for documentation, if you have any, that can provide evidence of autism during your earlier life. These can include school reports or previous assessments, even if they weren't specifically looking for autism.
- The person guiding you through diagnosis will also want to talk to people currently in your life, such as a partner, friend, or an adult child, to gain a better understanding of your personality and functioning.
- Then, there is a personal evaluation. This has both "official-looking parts", wherein you may be asked to solve puzzles or draw something, as well as parts with a more informal feel, wherein you talk to your evaluator. During this last portion, the diagnosing professional will assess your social and communication behavior and your personal accounts of your life experiences thus far.
- You finally get a written assessment, and your diagnosing professional will talk you through aspects of it to explain them.
During the diagnostic process, it is important to answer any questions you're asked as honestly and completely as possible for the diagnosing doctor to get the most accurate insights. If you are an autistic adult, chances are that you have developed masking behaviors that allow you to better pass as neurotypical. You may be relying on "scripts" to decide what to say in social contacts and you may have learned to mimic or make eye contact, for instance. Your evaluation is perhaps not the right place to put these strategies to use — be yourself, and if you do do things that do not come naturally, explain this during the diagnosis.
You can prepare for your evaluation by gathering documents you think may be helpful — notes teachers made of behavior that seemed different, for instance, or written feedback you have received in jobs. You can jot down any questions you have in advance, and write a letter explaining why you believe you are autistic. The more detail you can provide, the more complete a picture your diagnosing doctor will have access to.
As you go into the process, you may also want to prepare for what comes next. Some adults who are newly diagnosed feel nothing but relief, while others struggle once it's official — even if they clearly saw it coming. Also consider the possibility that your diagnosis will be inconclusive, particularly if you aren't able to bring people who were present during your childhood to the table, or that you will be diagnosed as neurotypical even though you were convinced you were on the spectrum.