Unlocking Support: The Importance of an Adult Autism Diagnosis

When I was growing up in the 90s and early 2000s, autism spectrum disorder was heavily stigmatized and misunderstood. Since I did exceptionally well in school, no one in my family even considered I might be autistic. Throughout my life, I struggled a lot with focus, sensory sensitivities and interacting with other people. When I was diagnosed with Ehlers-Danlos Syndrome (EDS)  in 2019, I learned how common it is to have ASD or ADHD with EDS. I was diagnosed with ADHD in 2021, but it still felt like I was missing a piece of the picture.

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Until recently, most adults were not diagnosed with autism in their youth. There are likely several reasons for this, including a variety of issues within the diagnostic process. People of color, nonbinary people, transgender individuals and women have been historically underdiagnosed. This is due to discrimination, stigma or misconceptions. The diagnostic process started to improve in the early 2000s, with new diagnostic criteria that more accurately represents how autism shows up in the world.

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For those of us who weren’t diagnosed earlier in life, though, getting an accurate diagnosis can be hard. Some of us have learned how to mask or camouflage so efficiently that we blend into a neurotypical world really well, making it difficult to find a provider who will take our request for an autism assessment seriously.

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This is one of the many reasons why working with a neurodivergent-affirming clinician is critical when seeking a formal diagnosis. Regardless of the outcome, the diagnostic assessment process can play a helpful role in better understanding yourself. 

The adult autism testing process will vary depending on the mental health provider you work with. It typically includes a diagnostic interview where your clinician will ask about your life experiences, developmental history and how you interact with the world. You may also be asked to complete questionnaires or self-reports. Additionally, your clinician will observe your behaviors, communication style, emotional regulation and reactions to social situations. Your clinician most likely will also ask for input from family members or close friends to help paint a picture of your behaviors and the challenges you face.

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While this can be an intense process, there are several benefits to getting an autism diagnosis.

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Receiving an autism diagnosis can provide not only clarity but also a sense of relief, as it validates the experiences and challenges many individuals have faced throughout their lives. A diagnosis can also give us the understanding, coping strategies and appropriate support we need to live more balanced lives.

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Self-understanding

People who begin to question if they may be autistic do so for good reasons. Often, they are looking for answers to help explain why they feel so isolated, struggle with interpersonal connections and more. When someone feeling this way receives validation through a diagnosis, it helps them get a clearer idea of who they are. Autism may also help someone understand their past experiences, choices and difficulties they’ve run into.

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Knowing I’m an autistic adult allows me to treat myself with more compassion. I used to be really hard on myself. For years, I felt like I had to hold myself to a higher standard than other people. If I failed, I would get emotionally dysregulated and it would feel like the end of the world. Now that I know I’m autistic, I’ve been able to work with my therapist on learning how to give myself some space and grace. I’ve also stopped blaming myself for being unable to predict when something might go wrong.

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Sensory adjustments and improvement

Through therapy, reading and connecting with other autistic adults, newly diagnosed folks can learn new coping strategies to improve their everyday lives. For example, I’m really sensitive to lights and sounds. I’ve tried a few different tools, and now I know that I always need to have noise-canceling or dampening headphones and tinted glasses with me when I travel. These are just a couple of possible resources in my toolbox, and they may not work for everyone––but for me, they make a world of difference. I can better advocate for myself and my needs since I’ve been able to explore what does and doesn’t help me.

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Unmasking

If someone doesn’t know they are autistic, they may also be unaware that they are masking or camouflaging. Since the world is not set up for neurodivergent people, it can be hard to move through everyday life. Sometimes, it might feel like we need to put on a mask to interact with co-workers, call our student loan servicer or even spend time with friends. Masking can help us get through these demanding situations. 

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Unfortunately, masking also impacts an individual’s energy levels, mental health and self-esteem. 

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When we know about masking, we can actively take steps to be more authentic or unmask. This lowers stress levels, improves mental health and limits the risk of experiencing autistic burnout.

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Navigating relationships with others

It isn’t always easy to navigate relationships with others. It can be difficult to know how to communicate what we are experiencing with other people, whether those people are our family members, partners or friends. Frustration can easily build up, especially when miscommunication or misunderstandings happen. 

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For those of us who are autistic, these misunderstandings might happen more often.

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It is often easier to explain what we are dealing with to the people we care about when we clue them in on our autism and how it affects us. For example, when people know that we struggle with making eye contact because we’re autistic, it makes it easier for them to understand why we’re not making eye contact. When we can build in that space with the people closest to us, it can make it easier to explain to new partners or friends that eye contact isn’t comfortable for us. The more we can practice letting people into our world like that, the easier it becomes––and the easier it can be to work through communication barriers or issues.

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Building close relationships where we feel fully seen can help us find and use effective strategies and coping skills. Trusted people can remind us to use tools and skills we’ve learned, which makes it more likely that we’ll use them when needed. Strong relationships also allow us to discuss our needs openly, increasing the likelihood of our needs being met moving forward. For example, family gatherings can be overwhelming for a lot of people—autistic and allistic (non-autistic) alike! When allistic people around us learn about autism, they can also learn how to make gatherings comfortable for autistic people.

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Access to support, resources, and protections

One of the biggest reasons to seek an autism diagnosis as an adult is to be eligible to access a variety of support and resources. You can access some services without a concrete diagnosis, but these services may be more generalized. If you're looking for autism-specific adjustments and supports, it will be much more likely with a diagnosis.

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A diagnosis can also provide you with certain protections under the Americans with Disabilities Act (ADA) and other regulations your workplace may have to follow. The ADA allows you to request reasonable accommodations from your employer. This might look like having access to apps, changes to your work schedule, or other things that allow you to continue to do your job. The ability to wear noise-canceling headphones or use specific task management tools are two examples of accommodations you might be able to access. In some cases, this can even include coaching or other tailored, appropriate support that can help you at work. 

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The ADA can also protect you at school, when you go shopping, and when you engage with the healthcare system. Not every place is subject to all ADA requirements, but they generally do have to be accessible.

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Additionally, having an autism diagnosis may encourage you to find a specialized therapist who can support everything that comes with autism. Using evidence-based modalities with an autistic-affirming lens, neurodivergent-affirming therapists can help you work through a variety of situations. 

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One example of this is called behavioral activation. This is a commonly used strategy in Cognitive Behavioral Therapy where a therapist works with a client to help them engage in fun activities during the day. A therapist knowledgeable about autism will be able to work with you on accommodations, such as helping you create a routine, block your calendar and set reminders to make sure you’re able to take part in something restful and enjoyable. 

Getting a new diagnosis at any age or stage of life comes with some challenges, and a late autism diagnosis can be particularly complex. Many people who receive a diagnosis later in life have spent years navigating a world that didn't fully understand or accommodate their needs, often masking or adapting their behaviors to fit in. When the diagnosis is finally made, it can bring both relief and frustration—relief for the clarity it provides and frustration for the missed opportunities or unaddressed challenges in the past.

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While receiving a diagnosis can bring clarity and validation, it can also introduce challenges in how others perceive and respond to it. Many people, including family and friends, may struggle to accept the diagnosis or even understand what autism means, especially if they have preconceived notions or misconceptions about it.

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For every person who accepts you, there will likely be some people who don’t. Usually, this is because they have a lot of myths and misconceptions about autism spectrum disorder. Some of these may be rooted in ableism, which is a form of discrimination aimed at those of us with disabilities, chronic conditions and neurodivergence. This can complicate how others understand and accept a diagnosis and the relationships that follow, requiring extra emotional labor to navigate.

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Family and friends not being accepting

One way ableism can show up is in friends or family members either not acknowledging or accepting an autism diagnosis. Sometimes, people don’t know how to respond to an autism diagnosis, especially if it challenges their preconceived notions of what autism “looks like.” Others may have their own internalized biases or discomfort, not fully understanding that autism is a spectrum or that it presents in a variety of ways, especially in adulthood.

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Sometimes, loved ones may even feel threatened or confused by the diagnosis. For example, some may question their own behaviors or wonder if they, too, are on the spectrum. These reactions can lead to awkward or strained conversations, as they may not know what the diagnosis means for the future of your relationship.

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Disclosing an autism diagnosis

The decision to disclose an autism diagnosis is deeply personal. It can feel empowering for some, but it may feel like an additional burden for others. The process of acceptance and disclosure varies depending on your environment, the people involved and your relationship with them. For example, you may choose to disclose your diagnosis only to a select group of trusted people or to those you feel would be most understanding. Others may decide to be more open, hoping that sharing their experiences might help increase awareness or foster empathy.

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There is no “right” way to approach disclosing your diagnosis. It’s important to consider the context—what kind of relationship you have with the person, how they might react, and whether or not they’re open to learning about autism. It’s also important to note that disclosure is a process, and you may need to revisit conversations over time as people learn more about autism and your unique experience.

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Ableism, unlearning and acceptance

While we all carry ableism with us—sometimes unconsciously—it’s important to remember that it’s possible to unlearn these ingrained biases. Ableism doesn’t just come from society at large, but can be internalized by individuals. That means that we can hold harmful ideas about our worth based on a diagnosis or what we can accomplish based on how others perceive us. 

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Unlearning ableism is a lifelong journey that takes time, patience and education.

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It’s important to know that people in your life may or may not choose to embark on that journey. Some may be willing to work through their misconceptions and biases, while others may resist or be unwilling to change. This can be difficult to navigate, especially when it involves people you care about. However, it’s important to focus on your own well-being and to prioritize relationships that offer understanding, support and mutual respect. Whether or not someone chooses to unlearn ableism is ultimately their responsibility, but your path to self-acceptance and authenticity is yours to choose.

It can also be hard to find a neurodivergent-affirming provider who takes your insurance and can see you quickly. Thankfully, here at Prosper Health, all of our providers are neurodivergent-affirming, whether they are working with you for your autism evaluation or ongoing therapy.

While the specific therapeutic modalities a therapist may use will be different for each individual, some of the more commonly used options include cognitive behavioral therapy (CBT), dialectical behavioral therapy (DBT), acceptance and commitment therapy (ACT), and mindfulness.

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Cognitive behavioral therapy (CBT)

CBT is one of the most common therapy modalities, with the goal of challenging negative thoughts and creating more healthy beliefs. This therapy can help people understand how their emotions, behaviors and thoughts are all connected. This modality can also help individuals understand harmful patterns of thinking or behavior. Once these are identified, creating healthier coping skills and mechanisms is easier.

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Dialectical Behavioral Therapy (DBT)

DBT aims to help people accept who they are and work to create the life they want to live. This is often accomplished through working on mindfulness techniques, coping skills, emotional regulation and interpersonal skills. DBT can be incredibly effective for individuals who have depression, substance use disorder and suicidal ideation.

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Acceptance and Commitment Therapy (ACT)

Like DBT, ACT is heavily focused on self-acceptance and values. Another goal of ACT is to focus more on being present while removing negative reactions to emotions and thoughts that may come up. If people can accept the things they don’t have control over, they can focus more on their reactions and actions in response.

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Mindfulness

Mindfulness is a therapeutic practice that helps individuals focus on the present moment, fostering awareness of thoughts, feelings and physical sensations. For autistic adults, mindfulness can reduce stress, manage sensory sensitivities and improve emotional regulation. Therapists working with autistic clients often adapt traditional mindfulness techniques to fit their sensory and cognitive needs. This might include using grounding exercises like focusing on specific tactile or auditory sensations or introducing simple breathing exercises to help anchor the client during moments of overwhelm. 

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Sensory-based mindfulness, like paying attention to the textures of an object or a specific calming sound, can be helpful if and when meditation feels too abstract. For autistic individuals who find stillness challenging, movement-based mindfulness, such as walking meditation or yoga, can be explored as an alternative. By tailoring these techniques to an autistic person’s unique needs and preferences, mindfulness can become a powerful tool for self-awareness and resilience, helping them navigate challenges with greater calm and confidence.

For many people, learning that they are autistic is helpful and enables them to live life with more knowledge. Having context about why we hyperfocus, only want to talk about horror movies or struggle to understand social dynamics can make a huge difference. It can also make it less challenging to find new tools, coping skills and appropriate support, making life less stressful. Plus, reducing stress is especially important for autistic people, since it significantly contributes to autistic burnout.

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If you’ve been wondering if you might be autistic, we can help!

If you are searching for a neurodivergent-affirming provider, Prosper Health is here to help. Prosper Health’s virtual diagnostic evaluations and therapy provides mental health support for autistic and neurodivergent adults. Unlike other services, these visits are generally covered by insurance. 

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Our expert clinicians incorporate evidence-based therapies into our sessions, tailoring all care to the unique needs of autistic adults. With Prosper’s support, managing autism is possible.