Should I Pursue an Adult Autism Diagnosis?
Updated: Nov 7
By Patty Laushman
I speak with many adults who suspect they are on the autism spectrum. Often their child has been recently diagnosed, and they can relate to the challenges that resulted in the diagnosis, or they may have read something about autism that really resonated with them. They often ask themselves if it makes sense to pursue a formal diagnosis or not.
In this post I will discuss the pros and cons of adult autism diagnoses. Let’s start with labels in general.
Are Labels Bad?
Labels are often seen as negative, but they can also be positive and helpful.
A label is simply a name or category given to someone or something. We use labels all the time in our everyday lives. For example, when you go to the grocery store, the produce is labeled with the name of the fruit or vegetable. This helps you know what you are buying.
In the same way, labeling people who are autistic with ASD can help others understand them better, and more importantly, it can help them better understand themselves. Labels can also lead to appropriate treatments and interventions if someone is struggling.
It is important to remember, however, that just because someone has a label, it does not mean that they are automatically defined by that label.
Pros of Assessment and Diagnosis
Let's take a closer look at some of the benefits of receiving an autism diagnosis.
Normalizes Your Experiences
Being neurodivergent can be pretty tough. People might think of you as odd, believe that you're doing things wrong, or wonder why you can’t do things they expect you to do. You might feel like you're often the odd one out and that nobody really understands you.
But receiving an autism diagnosis can actually be a really good thing. It can help you to understand yourself better, and it can also help to normalize your experiences. When you know that there are other people out there who are just like you, it can make you feel less alone in the world.
And when you know that your experiences are actually part of a larger neurological condition and even a culture and community, it can help you to feel less "crazy" or "weird."
Gives You a Better Locus of Control and Sense of Personal Understanding
One benefit of receiving an autism diagnosis is that it gives you a better locus of control. Having a label can lead to self-understanding, which can lead to self-acceptance, which can lead to self-love.
And this massively positively impacts quality of life. Many adults who receive a diagnosis later in life of things like ASD or ADHD at first feel shocked. But then they go through a process of reevaluating their entire lives in light of this new filter and ultimately feel a sense of peace because they suddenly understand why things were the way they were.
This newfound understanding leads to self-acceptance and better confidence in asserting one's needs and asking for accommodations. So if you're struggling with making sense of your life, an autism diagnosis might just be the thing that brings you some much-needed clarity.
Can Improve the Quality of Your Relationships
One of the most significant benefits is that it can improve the quality of your relationships. With an autism diagnosis, you will finally have an explanation for why you have always felt and acted "different."
The people in your life may finally understand why you do (or don’t do) what you do, and they can better accommodate what you need. With this newfound knowledge, you can also seek coaching from an autism-informed couples counselor or coach on how to improve your relationships.
Leads to More Effective Interventions or Support
Once you have a diagnosis of autism, you can learn more about how autism impacts you specifically and start finding autism-informed medical and mental health providers who can provide more effective care, which will have a directly positive impact on your quality of life. That said, even if you suspect you are on the spectrum or have self-diagnosed, you can start looking for autism-informed providers.
Employers are required to provide reasonable accommodations to people with disabilities, which autism qualifies as. You may benefit from more teleworking or written instructions or a meeting agenda in advance. Asking for and receiving accommodations on the job can literally be the difference between success or failure on a career.
A diagnosis also empowers you to look for employers who are neurodiversity friendly, increasing your chances of success. Many large employers, recognizing the unique and valuable strengths of autistic people, are starting neurodiversity initiatives to create interview processes and on-the-job supports to attract and retain this type of talent.
Gives You a Clearer Sense of Your Strengths, Weaknesses, and Limitations
An autism diagnosis can give you a clearer sense of your strengths, weaknesses, and limitations. For instance, if you are diagnosed with autism, you may realize that you are better at visual tasks than verbal ones. This can help you to focus on your strengths and provide you with a greater sense of self-worth.
Additionally, an autism diagnosis can also help you to understand why certain things may be more difficult for you than others. For example, you may have difficulty with social interactions or sensory overload. But once you understand your limitations, you can work on developing strategies to either overcome or accommodate them.
Improves Ability to Advocate For Yourself and Others
One benefit of receiving an autism diagnosis is it can improve your ability to advocate for yourself and others. When you know why you do the things you do, it's much easier to explain them to other people and insist on what you need to thrive.
And when you're able to explain your condition to other people, they're more likely to be understanding and accommodating. So, if you've been struggling to advocate for yourself or others with autism, a diagnosis can be a valuable tool.
Gives Peace of Mind
Receiving an autism diagnosis can be a huge relief for many people. For years, they may have struggled to understand why they feel different from other people and why they have trouble with social interactions, communication, and sensory issues. An autism diagnosis can provide them with an explanation for their difficulties and help them figure out what they need to improve their quality of life.
Cons of Assessment and Diagnosis
That said, there are a few things that people should know about assessment and diagnosis before they dive in head first.
It Can Be Expensive and Time-Consuming
The first potential downside is that it can be costly. Not only do you have to pay for the assessments themselves, but you also have to pay for the professional's time to go over the results with you. This often runs into the thousands of dollars, although if there is a university nearby, they sometimes have low-cost assessments.
In addition, assessment and diagnosis can be time-consuming. You will often wait for months on a waitlist, and then once you get assessed, you have to wait for the results.
Others May Reject Your Diagnosis
If you end up with a formal diagnosis, rather than be curious about autism, some of the people in your life may not believe you are autistic. This can be painful when that person is a family member or close friend.
Also, despite years of autism awareness campaigns, only a small percentage of people actually understand autism. If you tell someone you are autistic, they may say that you can’t be autistic because you can talk or some other piece of evidence based on their lack of understanding. This can be very frustrating to have to educate the people around you about what autism actually is.
In addition, labels can also create erroneous expectations and even lead to discrimination. People who expect someone with autism to behave in a certain way may inadvertently reinforce negative behaviors. They may also withhold opportunities, such as relationships, job offers, or career promotions, even where this type of discrimination is against the law.
While labels can be helpful in many situations, as you can see above, it is important to remember that they are only cognitive shortcuts. They should never be used to pigeonhole or marginalize someone with autism.
You May Experience Conflicting Emotions
The process of being diagnosed with autism can be a very emotional process. Individuals may go through a range of conflicting emotions, from relief to sadness to anger that no one figured it out sooner.
Second, the label itself can be a source of stress and anxiety. People who qualify for labels often feel different or broken. And this can cause problems with self-esteem, self-concept, and a sense of ability to affect one's life. An autism-informed therapist or autism life coach can help instill a sense of agency.
Correct or Incorrect Negative Diagnosis
Any diagnosis comes with the potential for a false positive or negative. The same is true for the assessment and diagnosis of autism, especially since professionals qualified to diagnose adult autism are hard to find.
An adult autism diagnosis is actually pretty difficult to get, so I don't see false positives as a problem, but I've definitely seen false negatives when the evaluator is uninformed.
There is also the possibility when you go through an assessment that you will correctly be told that you are not on the spectrum. Because the characteristics of people who are gifted, autistic, or have ADHD have so much overlap, some adults will pursue an autism diagnosis to find out they are not autistic but “only” have ADHD.
This can lead to a great deal of frustration in addition to wasted time and money.
If you've ever been to a doctor, you know that they love to give you labels. "You have the flu." "You have a cold." "You have a broken leg." But what if the label they gave you was "autism"? Would that be so bad?
It could actually be a good thing. In fact, labels can be quite helpful in understanding yourself if you are neurodivergent and provide the key that unlocks improving the quality of your life.