Unpacking the effects of a late autism diagnosis in adults

Autism spectrum disorder (ASD), commonly referred to as autism, is a lifelong neurodevelopmental condition. It can cause differences in social communication and interaction, as well as repetitive patterns of behaviors and interests. 

Autism is typically diagnosed in childhood around age 5, often before a child enters school. But previous generations of doctors, mental health professionals, teachers, and parents didn’t have the same knowledge of autism that we have today. This meant that many children didn’t receive a diagnosis — especially if their symptoms were mild or difficult to detect. 

Fortunately, thanks to increased awareness and understanding, many adults with autism are now receiving a diagnosis for the first time. One recent study found that the number of autistic adults enrolled in Medicaid doubled from 2011 to 2019. This increase could point to the growing population of adults seeking what’s considered a “late diagnosis” of autism.  

What does autism look like in adults?

Autism symptoms show up differently in each person. But some of the most common signs of autism in adults include:

• Having difficulty understanding others’ thoughts and feelings
• Feeling worried in social settings
• Having trouble making friends
• Preferring to spend time alone
• Having other people say you seem rude, blunt, or uninterested (even when that’s not your intention)
• Struggling to verbalize your feelings
• Having trouble understanding sarcasm or taking things too literally
• Sticking to the exact same routine every day and getting anxious if things change
• Not adhering to typical social norms (i.e. interrupting people)
• Experiencing discomfort with eye contact
• Having sensory sensitivities
• Easily picking up patterns or small details other people don’t notice
• Having a strong interest in certain subjects or hobbies
• Engaging in repetitive behaviors

What are the effects of diagnosing autism late?

There are many reasons someone might not receive an autism diagnosis until later in life. They may be skilled “maskers” of their symptoms. This means they can conceal outward signs of their condition, often by mirroring other people’s behaviors. 

Some people have milder symptoms of autism, and — with years to practice their coping skills — they may not experience an interruption in functioning severe enough to require support. Lastly, some adults go undiagnosed because they haven’t had adequate access to medical or mental health services throughout their lives. 

Late diagnosis seems to be especially prevalent among people assigned female at birth (AFAB) and gender-diverse people. This may be due to underlying genetic factors, brain differences, and the diverging ways that children are socialized based on their gender identity and expression. In many ways, young AFAB people with autism don’t necessarily fit the model of autism most people are familiar with. But this may be because our understanding of the condition stems from research that largely focused on people assigned male at birth (AMAB) for many decades. 

Regardless of the reason for the delay, it’s important to consider the effects of receiving an autism diagnosis later in life. For many people, it can help them better understand themselves, and they may find comfort in having a term to describe their experiences. Receiving a diagnosis is also an important first step in accessing support, like therapy. It can even help you feel connected to a community where you feel understood and accepted.  

10 tips for coping with an autism diagnosis as an adult

There are many positive things about receiving an autism diagnosis as an adult. But it’s not without its challenges. For example, you might begin to view painful past experiences through the lens of your new diagnosis. 

This emotional validation can help reduce feelings of shame. But it might also make you feel angry or frustrated that you didn’t have these insights sooner. You may wonder how your life may have been different if you’d received a diagnosis and support as a child. And now, newly diagnosed, you might feel confused about what to do next.

Rest assured that there are things you can do to support yourself and strengthen your mental health as an adult with autism. 

1. Prepare for mixed reactions. Your loved ones may have a variety of responses to the news of your diagnosis. If you feel that someone might be unsupportive, there are many ways that you can approach it, including openly sharing your feelings with them. You can also try bringing in a third party (like a therapist) to help with communication or setting boundaries for yourself, like not sharing more about your diagnosis with them. 
2. Engage in your interests. Make time for the hobbies and activities that you enjoy that help reduce stress. It’s OK to have a small number of interests that you gravitate toward.
3. Join a support group. There are many groups you can attend (either in person or online) for adults with autism. Spending time with other people from the autism and neurodivergent communities can help you feel supported and less alone.
4. Know your triggers. Many autistic people have difficulty with transitions or when something doesn’t go according to plan. While you can’t avoid these situations entirely, you can develop strategies to self-regulate after the trigger while also considering what you can do to bring more predictability into your day.
5. Manage stress. From feeling misunderstood by society to facing sensory challenges in your environment, all sorts of stressors are associated with living with autism. So try to make some time for stress-reducing activities you enjoy every day.
6. Use technology. Whether it’s for socializing or staying organized, technology can be a useful tool. There are apps that can help with things like keeping track of time, managing your to-do lists, and meeting new people.
7. Have patience. Making adjustments and receiving the proper support after getting diagnosed can take time. Try to have patience while you’re learning new skills and strengthening your mental health. 
8. Know your strengths (and needs). When you know your strengths, you have more opportunities to capitalize on them. And when you’re aware of your areas of need, you can ask for support and make a plan to improve.
9. Learn about autism. Educating yourself about autism can help you better understand yourself and become more comfortable with your diagnosis. It can also help you advocate for other people.
10. Talk to a professional. Therapy can help you improve your communication skills, develop coping strategies, strengthen your self-esteem, and more. Many effective therapies can be modified for autistic adults. 

Find care with Rula

If you’re an adult and suspect that you may have autism, you’re not alone. Many people enter adulthood having never received a diagnosis. Getting diagnosed, even later in life, can make a significant difference in your mental health and quality of life. It can help you understand yourself, give you language to describe your experiences, and open doors for support. 

No matter the issues you’re facing, Rula is committed to connecting you with the mental health support you deserve. In just a few clicks, you can use our therapist-matching program to find a provider who takes your insurance and offers the specialized services you need. With Rula, you get affordable, accessible care from the provider of your choice, all via convenient virtual appointments.

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