Part 5 in the I Think I Might Be Autistic Series

Whether you choose to seek a diagnosis or not is a personal decision. As an adult, there’s a good chance you don’t need a diagnosis. You’ve done your research, come to the conclusion that you’re on the spectrum and that’s good enough for you.

This is commonly known as self-diagnosis and when done correctly, it’s largely a well-respected approach in the ASD community. The primary reason? Getting an official diagnosis as an adult is difficult:

• Asperger’s Syndrome and autism present differently in adults than in children. Finding someone trained and experienced in adult diagnosis can be challenging.
• Many adults face numerous misdiagnoses before getting correctly diagnosed with Asperger’s or autism.
• Women in particular are often misdiagnosed because they present differently than male aspies on whom the traditional model is based.
• Diagnosis can be expensive and an adult evaluation isn’t covered by most health insurance.
• Diagnosis can lead to bias, stigma and/or create practical limitations, like not being able to join the military or having your parental rights questioned.

So how does self-diagnosis work? First, be prepared to do some work. Self-diagnosis isn’t as simple as taking the AQ and deciding you’re an aspie. Screening questionnaires can be a good place to start, but they’re just that: a first step.

Here are some additional steps you can take to verify, challenge or test out your belief/suspicion that you’re on the spectrum:

• Look at the DSM and/or ICD criteria for ASD (DSM-IV-TR criteria for Asperger’s and ASD, DSM-V criteria for ASD,ICD-10 criteria for Asperger’s and ASD).
• Be sure you understand what each of the criteria means. ASD criteria manifest differently in adults than in children, so look for examples of adult traits when considering whether the diagnostic criteria applies to you. It may also be helpful to think back to your childhood and try to determine whether you met the early signs of autism.
• Read books on the subject, both nonfiction (like The Complete Guide to Asperger’s Syndrome) and personal narratives (like Pretending to Be Normal or The Journal of Best Practices).
• Read about the experiences of Autistic adults (scroll to the bottom of the linked post for a list of Autistic bloggers). If possible, talk with one or more Autistic adults. Comparing experiences with diagnosed adults can be validating. Also, there are many Autistic adults online (Tumblr, Twitter, Facebook, bloggers) who are happy to answer questions about specific aspects of autism and being autistic. Just keep in mind that Autistic adults are people too and we have a broad range of opinions as well as differing comfort levels when it comes to sharing our personal experiences.
• Make a realistic assessment of your AS/autistic traits based on your reading.
• Talk with one or more trusted persons in your life about your self-assessment. Do they see the same traits that you’re perceiving? Share a list of ASD traits (female ASD traits) with them. Do they see traits that you haven’t considered?
• If you have access to childhood materials like report cards, school work, a baby book or old home movies/videos, review them in light of the childhood symptoms of AS/autism.
• If possible (and if you feel comfortable) ask your parents about your childhood. If you don’t want to frame your questions in terms of autistic symptoms, you could simply ask things like “Did my teachers say I [did X or behaved like Y]?” or “Do you remember me doing [X, Y or Z] when I was a toddler?”

As you do your research, keep in mind that not everyone has every symptom. Symptoms can change in severity and presentation over a lifetime, becoming either more or less noticeable with age. In fact, it’s not unusual to find that as you age, one trait (like sensory sensitivities) becomes more manageable while another (like executive dysfunction) increases in severity.

By the time you’ve completed your research, you should have a good idea of whether Asperger’s syndrome or autism is a good fit for you. Many adults are content with this and choose to self-identify as aspie or autistic based on their self-discovery process. Others feel the need (or have a specific reason) to seek out a professional diagnosis, which can be a long and difficult journey.

Even if you choose to pursue a professional diagnosis, you may want to work through the self-discovery process first. Often, getting diagnosed as an adult requires making a solid case for why you think an autism diagnosis fits you.

Weighing Self- vs. Professional Diagnosis

• Obtaining a diagnosis as an adult can be very difficult.
• Not everyone needs or wants a professional diagnosis.
• Self-diagnosis is widely accepted in the autism community when done with diligence.
• Self-discovery is a good first step toward professional diagnosis if you choose to pursue it.

Next in the series: Seeking a professional diagnosis