Autism Spectrum: My Diagnosis
On July 14th I gathered my courage and talked to my doctor about autism. Two and half months later, I received a diagnosis for Autism Spectrum Disorder. Since my diagnosis, I've had many people contact me asking about the process.
My diagnostic process was relatively straightforward, but it was still an intense time emotionally and mentally. My research-focused brain wanted to make sure that I covered all bases—that I was thorough and honest and did my best to receive the most accurate results possible. I didn't want a false negative nor a false positive.
Here is my approach & recommendations:
Find the diagnostic criteria for Autism Spectrum Disorder in your country. In the United States, we use the DSM-5 (American Psychiatric Association. Diagnostic and statistical manual of mental disorders. 5th ed. Arlington, VA: American Psychiatric Association; 2013).
Read through the criteria and begin reflecting on yourself.
Autism has two overarching categories of persistent deficits/differences: (A) Social communication and social interaction, and (B) Restricted, repetitive patterns of behavior, interests, or activities. For the DSM-5, you will need to meet criteria for all 3 sections of (A) as well as 2 of the 4 sections of (B).
Compile self-reflection on each criteria. To do so, copy the criteria into a word document for compiling your observations. I created a blank document of the DSM-5 criteria that you can download and use for yourself. In the bullet points under each section, list observations and memories about yourself.
Be sure to include your traits from early childhood (birth to 5 years old). Autism is a neurodevelopment disorder and the criteria also states that (C) Symptoms must be present in the early developmental period.
Ask family members about your early childhood. (You don't have to disclose that you are curious about autism). What was your birth like? Were there complications? What were you like as an infant? What did you struggle with? What were your challenges as a toddler, preschooler, or kindergartener? What frustrated you? What interested you?
Take time to complete this step. Add to it over the following days and weeks. By paying attention, you will continue to remember and observe new things about yourself.
Focus on challenges that are persistent or cause significant impairment. Make sure to read the final criteria (C, D, and E). The DSM-5 is for diagnosing disorders, and you'll need to demonstrate that (D) Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning. However, impairment does not always need to be present, and may not become fully manifest until (C) social demands exceed limited capacities, or may be masked by learned strategies in later life.
Once you have reflected on yourself and the criteria, you can start the next step. Compiling this baseline knowledge about yourself will aid your success in receiving an accurate diagnosis (no false negatives nor false positives).
Call your health insurance provider and find out if they cover autism testing and diagnosis, and if you will need a referral. It can cost a few thousand dollars out of pocket. Either you will need a referral from your primary doctor first, or you can go directly to the testing doctor yourself. Find out your deductible, co-insurance, and co-pay as well.
Next, you'll need to find a doctor who does autism testing and diagnosis. My doctor's office referred me to another doctor who does autism testing, but when I called her office I discovered that she only diagnoses children.
Make sure the doctor has experience diagnosing your demographic (e.g. adult women). Most doctors only test children for autism. Also, the tests for autism were normed on boys and men! So if you're an adult, and especially if you're an adult woman, you'll want to find a doctor who has more diverse experience and knowledge.
In the United States, you can search for doctors at Psychology Today. Set filters for (1) your location, (2) your insurance, (3) autism (under 'Issues'), and (4) psychological testing and diagnosis (under 'Types of Therapy'). If there are not many search results, widen your search radius or search within the nearest major city.
There are 5 important questions to ask each doctor. I called everyone who appeared in the search results and left a message with several important questions: (1) Do they have availability? (2) How long is the wait for an appointment? (3) Do they accept my insurance? (4) What do they charge? (5) Do they test for autism in adults? (6) Do they have experience testing for autism in women?
Listen carefully to their responses to your questions. I asked these same questions to them over the phone, paying close attention to their experience testing adult women. Their responses should be thoughtful and informed. They should explain their adaptive approach, since testing adult women, for instance, can look different from the norm.
Make sure that you are well-informed too, because that will help you evaluate potential doctors. I searched "autism women" on YouTube and I learned a lot from the #ActuallyAutistic women who shared their experience, as well as research presentations. Their observations also triggered my own memories and helped me organize my insights.
It's okay to be nervous. I was nervous about being misdiagnosed. My goal was to understand myself more fully and accurately—and I didn't want to get diagnosed with autism if I wasn't actually autistic. I stayed away from videos and articles that focused on the testing and diagnosis process because I didn't want bias the test.
Be open and share your concerns. When I found a doctor that I thought would be a good fit, I was open with her about my concerns. I told her that I was worried that I could be misdiagnosed because I was a woman. I told her that I didn't have time to do as much research as I would like to because of school commitments, and I was worried that I could be misdiagnosed because I wasn't well enough informed.
Pay attention to how the doctor approaches your concerns. She told me that a good doctor is trained to "read between the lines" and spot symptoms during the testing and interview process. She said that I can always reach out to her after my testing if I missed something or want to add something new. She gets rather long emails from several of her clients! That helped me feel comfortable to book an appointment with her.
My doctor used the ADOS and the ADI-R tests to evaluate me for autism. ADOS is the Autism Diagnostic Observation Schedule which consists of several puzzles, games, and activities. The ADI-R is the Autism Diagnostic Interview – Revised and was a semi-structured interview. I didn't read up on anything related to these tests before my appointments with her because I wanted to approach them naturally and without bias.
Be as open and as "yourself" as you can be during this process! Don't repress your mannerisms nor act how you think you're supposed to act. Many people—especially women—have been taught to camouflage or mask our autism symptoms. Allow yourself to just be. For me, it was a fun experience and such a relief because I felt that I could freely be myself without being judged.
Your doctor will also need to conduct a family interview. In the United States, you can choose who this person is (partner, parent, etc.). If you have any worries, talk to your doctor about your comfort around disclosure. You may feel that your parents might not know your struggles as a child very well (especially if you masked them), or maybe your parents have memory challenges. Talk with your doctor and be open about your concerns.
This step is crucial: Ask your chosen family member to reflect on the diagnostic criteria ahead of time. Once you choose a person for your family interview, give them a skeleton document of the diagnostic criteria and ask them to spend some time filling out their own bullet points for each section. This will help their memory and recall when they have their interview. Give them permission to be open and honest about their experience of you.
You may need to complete some additional assessments. Common assessments cover mood and executive function. Mood disorders such as anxiety and depression often co-occur with autism, as do executive function disorders. For instance, ADHD and autism often co-occur! So do intellectual disabilities and autism. Having a holistic understanding of your needs will help your doctor recommend a treatment plan (such as specific types of therapy).
Then, you wait...
Finally, you get your results! You will meet with your doctor. My doctor began by telling me that I met the criteria for the diagnosis. She then talked through each of the criteria and described her evidence and reasoning for how I met the criteria (including the observations from the family interview).
You will receive a level for your autism. The levels (Level 1, 2, or 3) describe the level of support you require for your autism. Level 1 requires support, Level 2 requires substantial support, and Level 3 requires very substantial support. Importantly, the levels do not communicate how intensely you experience your autism, but only how much support you require.
At the end, your doctor will recommend a treatment plan. For instance, if you struggle with sensory integration your doctor might recommend a consult with an occupational therapist. Or if you struggle with interpersonal relationships your doctor might recommend autism-informed counseling. Or if you struggle with emotional regulation your doctor might recommend autism-informed Cognitive Behavioral Therapy. Importantly, find therapeutic doctors that have experience with autism, which requires a modified approach to treatment. If you like the doctor who diagnosed you, you might inquire if they do therapy as well. Be aware that wait lists can be several months long.
I hope this has been helpful for you! Please reach out (via the form below) if you have follow-up questions about the process, or if you have insight about how the process differs in your locale or for your context. <3