When a person realizes they may be autistic as an adult, a lot of questions will arise. Among these questions is the big, “to get diagnosed, or to not get diagnosed” dilemma.
There are quite a few factors to take into account when making this very personal decision. A diagnosis can be an affirming and validating step that leads to increased access to accommodations. However, an official diagnosis can also open a person up to more instances of ableism and stigma.
Do I Need an Adult Autism Assessment?
If you’re beginning to wonder if you have Autism Spectrum Disorder (ASD), you may wonder if you need to seek out an adult autism assessment. Does everyone who suspects they may have autism need to get an official diagnosis?
The short answer is no. The autism community has long accepted self-diagnosis as valid. However, you will need to do research into autism, self-reflect, and likely talk to other autistic people in order to make an informed self-diagnosis. While media can be a great resource to start you on your journey, it should not end there.
There are some cases in which adults with autism may choose to seek out an official diagnosis. Let’s go over some of the pros and cons.
Adult Autism Diagnosis: Pros & Cons
Pros
- Validation: If you are considering seeking an adult autism test, chances are you have already encountered a lot of trauma and invalidation due to not knowing you are autistic. By getting an official diagnosis, many people will feel validated in their struggles, and may feel a greater sense of self understanding. An official diagnosis can also give some people increased confidence to share their diagnosis with others and ask for accommodations/accommodate themselves.
- Accommodation: An official diagnosis can, in some cases, increase access to accommodations. For example, some workplaces and academic settings will require a person to have a diagnosis in order to obtain accommodations necessary for success. While self-diagnosis will work for accommodations in some situations, it may not in others.
- Dealing with imposter syndrome: It is very common for late diagnosed people (with autism, ADHD, or AuDHD) to experience imposter syndrome about their neurotype. For many, an official diagnosis can help quiet imposter syndrome and help with acceptance and understanding.
Cons
- Stigma and ableism: These are huge issues for autistic people. There have been self reported instances of an autism diagnosis hurting peoples chances at fostering and adopting, immigrating to other countries, and being seen equally in court cases. Ableism can also come into play in the medical field and when looking for a job. These possible downsides to diagnosis and self disclosure come from systemic and individual ableism and/or lack of understanding. While many autistic people are able to navigate these areas of life effectively, the powers that be may see the word “autism” and have negative biases about the person in question’s capabilities.
- Cost: Cost is also a big factor in the decision of whether or not to get evaluated. Autism evaluations are often not accessible to adults due to their high cost. Some people who want a diagnosis may be prohibited by their financial situation. This is another reason that self-diagnosis is supported in the autism community.
How Do I Get an Adult Autism Assessment?
The first step is to find a psychologist or a psychiatrist who specializes in diagnosing ASD. Then, you’ll want to ask some questions about their experience, training, and diagnostic methods to find the best fit. Finally, you’ll want to prepare for your appointment ahead of time.
Picking the right provider for you
When looking into being evaluated for autism as an adult, the provider you pick is imperative. If at all possible, it is best to pick a provider who is experienced in diagnosing adult autism. If you are a woman or AFAB individual, it’s especially important to find someone who lists ASD as a specialty due to the often differing traits associated. The search for the right provider can be a difficult one. At the bottom of this page, a good resource - created by a neurodivergent diagnosing professional - is linked that may help. You can also:
- Ask your primary doctor (if you have one) for a referral
- Ask your insurance provider (if you have insurance) for a list of covered autism specialists
- Look on local reddit pages, reviews, or ask around in the local community to find someone who is knowledgeable in adult autism
- Reach out to local medical centers and universities (they often have autism centers and resources, sometimes at reduced cost based on income)
Once you have compiled a list of potential providers, these are some things to look for/ask a potential provider to ensure they’re a good fit.
Being Prepared for Your Appointment
Many of the steps listed in the self-diagnosis portion can also be very helpful to prepare for your appointment. In the moment it can be hard to call on examples of ways that you relate to autism. By writing out traits you’ve observed in yourself, doing self reflection, and connecting with the community ahead of time, you will be better prepared to convey relevant information during your appointment.
Steps to Self Diagnosis
If you decide that self diagnosis is the right thing for you, below is a non-exhaustive list of ways to ensure an informed self diagnosis.
- Researching autism: If you think you may be autistic, a great first step is to look at the DSM diagnostic criteria and see what parts of your life and experiences line up with the traits listed. The wording can be confusing, so I would highly recommend looking into the vastly different ways that traits can present. For example, women and AFAB individuals will often have different expressions of autism due to increased social pressure, among other factors. A quick google of autism traits common in AFAB people will result in a myriad of resources (I recommend picking ones created by actually autistic people) to use as a jumping off point.
- Self reflection: Self reflection is a huge part of self diagnosis. Looking inwards - both in the present and in the past - is necessary, especially when considering that the majority of late diagnosed people are high masking. By adulthood, if a person has been masking most of their life, that mask can almost feel like their authentic self. While unmasking will often be the ultimate goal, that can’t happen until the person knows that they are autistic. Looking at the individual’s internal experience of the world is often a key piece in figuring out if a person is autistic.
- A great example of ways to see if your internal world matches up with autism traits is to think about the diagnostic traits and ask yourself if these things are easy and natural for you. For example, you may be able to maintain eye contact, but do you find it difficult or have a system you have to use in order to do so (ie. looking at the forehead, counting seconds of how long to make eye contact, have a hard time listening at the same time as making eye contact)? Difficulty with things such as this can be an indicator pointing towards autism.
- Ask for help: The autism community is a beautifully diverse group of people with some members who are happy to help others explore what it means to be autistic. By connecting with autistic people you can pay attention to see if their experience has commonalities with your own. Asking questions and making connections, online or in person, is a great way to learn more about what it is really like to be autistic aside from stereotypes and clinically written DSM criteria.
- Online assessments: While not diagnostic on its own (professionally or otherwise) there are great online assessments that can help aid in your journey. A resource to access some of these assessments is listed in the resources section.
- Common experience: Another way to know if autism is something you should look into further is if you share common experiences with autistic people. Some feelings autistic people often experience at some point in life are a feeling of being “different” or even “alien” throughout life. A very common thing I hear is “I wished that being human had a rule book,” or “I felt like everyone else had a rule book that I didn’t.” This experience can also be described as an invisible wall going up when trying to communicate with others.
Adult Autism Test (Final Thoughts)
The choice to get professionally evaluated is a very personal one, and there is no “right” one-size-fits-all answer. Each person should weigh the pros and cons that a diagnosis would have on their life and proceed from there.
Lastly, wherever you are on your journey, be gentle with yourself. Realizing that you are autistic as an adult is a huge shift that is often accompanied with a range of complicated feelings. While knowing you are autistic can be a positive thing in the long run, accepting and understanding your neurotype takes time and energy. Remember to always go at your own speed and accommodate your needs in the process.
Adult Autism: Additional Resources
DSM diagnostic criteria for autism
List of neurodiversity affirming providers
Association for Autism and Neurodiversity: Diagnosis FAQs
