If you’ve landed here, maybe you have been quietly researching traits of autism, looking up screening questionnaires, and wondering if you could be part of the recently reported 39% of autistic patients that have co-occurring Ehlers-Danlos Syndrome (EDS) and hypermobility spectrum disorder (HSD). Before I ever sat across from an evaluator, I spent months reading, questioning, and second-guessing myself too. If you’re in that stage now, know that curiosity itself is a legitimate starting point, and there are solid tools out there to help you sort through it.
Screening Tools Worth Knowing About
Long before I booked an evaluation, I ran myself through a few of the screening questionnaires that clinicians commonly reference. None of them are diagnostic, but they gave me an understanding of patterns I’d never been able to name, and they made my eventual conversations with a provider much more productive. My provider actually utilized some of these as a pre-evaluation before my appointment.
- RAADS-R (Ritvo Autism Asperger Diagnostic Scale–Revised) – Built for adults who were never diagnosed in childhood, often because their traits didn’t fit the stereotype clinicians were trained to spot.
- CAT-Q (Camouflaging Autistic Traits Questionnaire) – If you’ve gotten good at performing neurotypical behavior, this tool accounts for the ways that skill can hide you from a standard checklist evaluation. It is designed to help account for masking behaviors.
- AQ (Autism Spectrum Quotient) – A screening questionnaire that evaluates autistic traits across 5 domains: social skill, attention switching, attention to detail, communication, and imagination.
Treat these as a compass, not a diagnosis. They’re most useful for organizing your thoughts before you ever walk into an office, or for building the confidence to bring the topic up with a provider in the first place. If you aren’t yet at a place comfortable enough to seek out a professional evaluation, they can simply serve as information to mull over yourself.
How the Testing Process Actually Works
Finding the Right Provider
This step is quite an important part of the process, because the provider evaluating you has the potential to shape your understanding of yourself. A lot of general therapists simply haven’t been trained to recognize autism in adults, especially in people who’ve spent a lifetime compensating for it. This can lead to either misdiagnosis or delayed diagnosis – trust that I know this from personal experience. If my previous general therapists would’ve had more robust training in recognizing autism, it could’ve saved me some hurt. Since that wasn’t my case, I started my search with something as simple as “adult autism assessment near me,” then spent a lot of time reading through each provider’s background to confirm that an adult autism evaluation was actually something they did regularly, not just something listed among a dozen other specialties. I also reached out to 1 or 2 people I knew were diagnosed to ask if they had recommendations. If you see a regular therapist, you can also ask them if there is anyone they would recommend, but consider looking into them as well.
Getting Ready for the Appointment
Everyone approaches this differently. Some people prefer to walk in with zero expectations, and others (like me) want to be prepared. I brought with me a document where I logged every trait I’d noticed in myself over my lifetime, plus things friends and family had pointed out as well. If you have comfortable relationships with people who have known you since childhood, disclosing your journey and asking for their insight could be very beneficial. Bringing these documents in was helpful for me because I was extremely nervous. I was nervous I’d come off too neurotypical and they wouldn’t be able to parse out my autistic traits. Writing them all down ahead of time meant I wasn’t relying on memory and wouldn’t forget anything important. It also felt somewhat like validation of my experiences, since self-doubt and gaslighting tends to creep in at this stage.
You could also bring the results from the screening questionnaires if your provider didn’t already have you do them.
I also brought along a piece of research connecting autism to Ehlers-Danlos Syndrome, since there’s a documented correlation between hypermobility spectrum disorders and autism. My evaluator was already familiar with the research, which was a relief, and he actually told me he already had suspicions that I was autistic just from my medical history. He holds a belief that if autism evaluators either aren’t familiar with or aren’t considering the relationship between the two disorders, they are not up to date on clinically important literature.
Give yourself permission to treat this like the emotionally taxing event it is. Clear your calendar for after the appointment if you can. This advice was given to me by the provider before my appointment. I was running on fumes by the end of mine and was grateful I had nowhere else to be. I would also recommend eating beforehand since the appointment can last longer than you’d expect. Bring something to sip on. I brought water but also a “treat” drink for sensory input. Lastly, if you are a fidget person, it is totally fine to bring one with you. My provider had some sitting on his coffee table and even let me keep the one I had been fidgeting with after. It was my first fidget toy, and his gesture helped me give myself “permission” to use the tools that help me.
The Day of the Evaluation
Obviously, check in at the front desk. If you find yourself spiraling in the waiting room, stepping into the restroom for a minute can give you a small, private moment to reset (aka try to calm the heck down) before being called back. Take advantage of any water or snack they might have to offer in the waiting room, or enjoy the one you brought.
Plan for the session itself to run anywhere from one to three hours, depending on how much back-and-forth happens. Some evaluators might even break it up into a few appointments. Everyone is different. Expect a walkthrough of your medical and psychiatric history – this is your window to bring up anything relevant, which is exactly when I raised the hypermobility research. Your evaluator will likely also revisit your questionnaire answers at some point, using them to understand how you process the world outside a clinical setting.
From there, they’ll typically work through the DSM-5 diagnostic criteria either in an obvious “line by line” way, or a less obvious way through conversation-style dialogue. If at any point you don’t understand the question or need clarification, it is okay to ask for an example or to have it phrased a different way. There are no “wrong” answers; honesty is the best way for the evaluator to understand you.
Lean on the prep work you did. Having my self-summary meant I could reference my notes and answer from a calmer place instead of racking my brain under pressure. By the end, some evaluators will share a preliminary impression on the spot, while others hold everything until the official written report is ready. If that timeline matters to you, it’s completely fair to just ask how and when you’ll get the results.
Once It’s Over
However the appointment went, give yourself the rest of the day to just rest. It’s a strange kind of exhausting, even when it goes well. The wait for the official report afterward can feel endless, and it’s easy to let that waiting period turn into anxious spiraling. What helped me was reminding myself that no report, whatever it says, changes the reality of my lived experience. Any answer is some answer, even if it was different from your expectations.
Key Takeaways
- Screening tools are a starting point, not a diagnosis. The RAADS-R, CAT-Q, and AQ can help you name patterns you’ve noticed in yourself and can make conversations with a provider more productive, and some evaluators even use them as pre-evaluation tools. But none of them substitute for a professional assessment.
- Choosing the right evaluator matters a lot. Many general therapists aren’t trained to recognize autism in adults, especially those who’ve spent a lifetime compensating for it, which can lead to misdiagnosis or delayed diagnosis. It’s worth vetting providers specifically for regular experience with adult autism evaluations, not just autism listed as one of several specialties. Asking for recommendations from people who’ve been through the process can also be helpful
- Preparation can make the appointment far less overwhelming. Bringing a written log of lifetime traits (including observations from friends and family), screening questionnaire results, and even relevant research (like the EDS/HSD-autism correlation) can ground you if nerves make it hard to recall things on the spot.
- The day itself is emotionally taxing, so plan around that. The appointment can run long, so eating beforehand, bringing water and a fidget item, and clearing your schedule afterward all help.
- Whatever the eventual report says, it doesn’t change the reality of your lived experience.
By Tayler Goectau
clinical research coordinator,
disability advocate
@distaaybled
Sept. 2026
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