Everything You Need To Know About Seeking an Autism Spectrum Disorder Diagnosis as an Adult
When I figured out that I was likely on the spectrum, it was like an existential bomb went off inside of me. I found myself immediately forced onto what felt like a runaway emotional rollercoaster ride. I felt new bodily sensations I hadn’t before, a very new internalized awareness I hadn’t fathomed before, and quite a lot of complex emotions. The knowledge seemed to melt away the thick shell that previously covered my exterior. I felt naked, exposed, and alone. I was not prepared for this, but how can you really be prepared for that in your thirties? I began to accept it but I found myself stuck… I thought, “Okay, I’m almost positive I’m Autistic. What the hell do I do now?”
It was only the beginning of a long road that I am still navigating. When I originally searched for help and resources, It seemed impossible to find what I was looking for or information I would find confused me more. So, if you’re feeling lost and alone right now, I know where you are and no long ago I was there, too. I will give it to you straight, a lot of the process will not be fun, but where you are now is temporary. You now get to forge your own path.
So, let the journey begin!
This list is only meant to be suggestions or a guide to use on your own journey.
1. TAKE ONLINE SELF-TESTS FOR AUTISM SPECTRUM DISORDER
If you suspect you may be autistic, it’s a good idea to take the most commonly given self-report tests before you come to any conclusions. Both the RAADS-R (formerly called the RITVO but updated) and the Autism Spectrum Quotient (AQ) are the most common self-report diagnostics within the medical model for adults and easily accessible online*. It’s important to note that your scores do not indicate whether you are autistic or not, even if you score high, but rather scores show the likelihood of getting a diagnosis.
Specialists and doctors who diagnose Autism Spectrum Disorder in adults may request these or others self-tests as part of the diagnostic process, but these tests are only a small part of the diagnostic process as a whole. Depending on your personal medical history and current situation, they may also request other in-depth tests to be completed. They will also take into account your full developmental history and they often request to speak with close family members such as parents or your significant other/spouse to get a clear picture of your day to day “functioning” currently and throughout your development.
2. FIND A COMMUNITY OF LIKEMINDED ADULTS
I had a particularly hard time trying to find an accepting and understanding space where I could freely ask questions to help me understand all of the new concepts and ideas I was processing. I joined too many Facebook groups, and was kicked out of a few of them for asking questions I didn’t even know was appropriate yet. I found my internet searches causing me to be overstimulated, easily overwhelmed, distracted, and confused by social media “resources” and all of the conflicting information I found. There are a few great late diagnosis and neurodiversity focused groups on social media, but I felt called to create the group I really wanted and couldn’t find, which is why I created the CONNECT Squad. The CONNECT Squad is a FREE and private community for neurodivergent adults to connect, give and find support, share, grow, and learn together in a safe, understanding, and accepting space without the distractions of social media and unwanted ads. Feel free to join or check it out by, clicking here.
3. LEARN MORE ABOUT ATYPICAL AUTISTIC TRAITS IN ADULTS
It wasn’t until I read this list of lesser-known autistic traits, or what I like to call “atypical” traits, that I knew in my bones that I was autistic. Self-tests alone didn’t give me that security I longed for, but relating to a long list more than I’ve ever related to anything else in my life? That was when I really grasped that this was very real. It was this list that was anecdotally observed and recorded by Tania Marshall* (a psychologist based out of the UK) was about “female traits” of autism. I do want to point out that the more I learn and grow within the autism community, the more I prefer to identify this list as an “atypical presentation” of traits that may lead to late diagnoses rather than excluding those who are gender non-conforming, trans, nonbinary, and/or men from this list, but either way, this is a great list if you are not quite sure if you are autistic or don’t quite understand the different presentations of autism.
4. SHOULD YOU GET A FORMAL DIAGNOSIS OR IS SELF-DIAGNOSIS GOOD ENOUGH?
Until very recently women and people of color were not included in autism studies (and improvements still need to be made in his area) and it’s also important to be aware that the DSM-V diagnostic criteria* is mainly aimed for the diagnoses of children. That’s right, there is no distinguishable diagnostic criteria or even a guide for the specific diagnosis of adults on the spectrum who were missed as children. While it may be widely debated, I believe self-diagnosis is valid as a starting point, and here is why: In most countries today and within most current health systems, those who identify as women and BIPOC are more likely to be left behind, dismissed, and depending on income and location, some do not have any access at all to the current diagnostic process. Whether you want an official diagnosis or not, self-diagnosis needs to come first and it’s important to know what you may be up against if you do want to pursue a formal diagnosis. Unfortunately, most evaluations are conducted so that the “burden of proof” is on the patient and especially for the groups mentioned above, it is not uncommon to be dismissed or turned away in the process. It is not easy to find a specialist or a doctor that specializes in diagnosing adults on the spectrum or knowledgeable about the atypical or the common masking of traits* that may skew an evaluation. If you‘ve made it into adulthood without a diagnosis, evaluators may assume you are “okay” and (falsely) believe that disqualifies you from the diagnostic criteria, but most specialists of adult diagnosis have the knowledge to know that what people see is not always the experience inside of the person and that one of the major dilemmas with adult diagnosis of ASD.
Whether you ultimately seek a clinical diagnosis or not, a self-diagnosis first may be critical for a few reasons:
- Adult Autism evaluations in the United States are not always covered by insurance and if you are paying out of pocket, they can be pretty pricey.
- In countries like Canada, the UK, Australia, and various countries in Europe it is common to have to be referred to a specialist by a general practitioner with no formal training or educational background regarding Autism. That means you will likely have to heavily self-advocate for yourself and essentially convince your doctor to give you the referral. When/if you get the referral it’s common to have to wait 1–2 years to see the specialist.
- Most autism specialists are only trained for diagnosis of children and have little to no experience or formal education diagnosing adults and without this specific training or experience you may be turned away.
- A diagnosis is not guaranteed, obviously, and is dependent on many variables including the doctor’s perspective of what they think autism is and at times what it should “look like”. Sadly, this is hard to predict or know just by asking a doctor a few questions before agreeing to an evaluation.
What are the risks and benefits of adults seeking a formal diagnosis?
According to the AASPIRE Healthcare Toolkit, their are potential risks and benefits* when adults are seeking an Autism Spectrum Disorder (ASD) diagnosis.
Potential benefits of a formal diagnosis of ASD are:
- Would confer anti-discrimination and legal rights to accommodations in school, at work, in health care, or in other settings.
- May assist the individual in developing a better understanding of self.
- May provide peace of mind through the professional confirmation of life experiences.
- May provide means to experience better coping or quality of life by more directly recognizing strengths and accommodating challenges.
- May provide other means to understand and support the individual.
- May qualify the individual for benefits and services for people who have an ASD diagnosis.
- May qualify the individual for programs for people with disabilities, such as scholarships or incentives that are meant to increase workplace diversity.
Potential risks associated with seeking an ASD diagnosis are:
- The process of seeking and being evaluated for the diagnosis may be stressful.
- The person may perceive the interaction with the diagnostician or provider as negative, disrespectful, or otherwise uncomfortable.
- The interpretation of ASD criteria and subsequent diagnosis varies by provider, particularly in the adult presentation.
- Information about an individual’s ASD could potentially negatively impact child custody cases.
- Others in the individual’s life may still not be supportive, even with the diagnosis.
The AASPIRE Healthcare Toolkit is available here: http://autismandhealth.org/.
Common reasons adults may seek an adult diagnosis of ASD even when aware of the difficulties that may be involved:
- Validation and wanting to feel “seen”.
- May believe they’ve been misdiagnosed and want accurate or updated medical records.
- May believe no one will believe they are autistic without “proof”.
- Professional or school/university accommodations are needed and require medical documentation.
With all of that said, there are other potential roadblocks specifically adults may face when seeking a formal diagnosis. For instance, in the US adult Autism evaluations are rarely covered by insurance which means you are required to pay $1600 — $3500 out of pocket depending on the doctor and the scope of testing recommended for the evaluation. At this time, there very little research published on this subject, and most of the doctors who are qualified to be considered specialists of adult diagnosis have done their own self-study through self-study education, clinical experience, and their own research with adults on the spectrum
So, should you try to get the diagnosis or not? This decision is up to you and you should do your research and decide for yourself (and I don’t think anyone else should make this decision for you). If you’re asking me personally, I think that if you can, you should but that it’s okay if you can’t. When you can later down the road, then you can pursue it then. The main reason I think it’s worth trying for if you can, is that documented cases of women and BIPOC helps the next generation of autistic kids be properly identified and will reduce late diagnosis. It also helps statistics and prevalence numbers. The larger the numbers related to documented cases of ASD, the sooner we can demand and expect Neurodiversity acceptance (the acceptance of neurological differences). For instance, it is still reported that Autism is mostly diagnosed in white males, but there is no evidence that autism occurs more widely in Caucasians. With the spike of girls being diagnosed within the last 5 years, the evidence may be showing that boys are not more likely to be autistic, it is just more likely for males to be officially diagnosed and diagnosed at an earlier age.
After being officially diagnosed at age 34 (I’m now 36), I can’t say that actual diagnosis has helped me much, personally. I own my own business, so I can accommodate my schedule and environment as needed so I am no in need of workplace accommodations. What’s helped me the most since my diagnosis is finding a good therapist and that could have been just as successful with self-diagnosis. The truth is that I don’t see a lot of benefits compared to the risks for getting officially diagnosed beyond it improving statistics, receiving workplace or school accommodations are needed, or if you plan to file for social security disability or a program similar to it. On the flip side, in some states, like my home state of Pennsylvania, an Autism diagnosis gets you a medical marijuana card and I have definitely enjoyed that benefit.
It may also be important to note tha I have an official diagnosis and beyond my husband, pretty much no one believes that I am autistic or acknowledges it. It doesn’t seem like getting a diagnosis only to have proof actually change how others will react to the news, so I wouldn’t recommend making your decision solely based on that. With or without an official diagnosis, you will still have to educate those around you about autism, the same way you educated yourself.
We still have a lot of work to do regarding autism education, and it’s important to be aware of that uphill battle that comes with or without an official diagnosis, but I will end with this: No matter what anyone says, autism is a neurotype that is different for each person and it’s YOUR BRAIN and no one else’s.
If you decide to pursue a formal diagnosis, here is a global list of Doctors who specialize in the diagnosis of adults Autism Spectrum Disorder.
*Please note: The views, information, or opinions expressed on any linked content within this article are solely those of the individuals involved and do not necessarily represent those of CONNECT.”
