Should You Seek Out a Late Autism Diagnosis?

Understanding Late Autism Diagnosis:

Late autism diagnosis is a term that refers to people who are diagnosed with autism spectrum disorder (ASD) later in life than in childhood. Some people self-diagnose after a thorough investigation, and now there is the option of guided self-assessment through Lara Schaeffer’s Autism Discovery services. A guided process with Lara allows a more efficient and thorough investigation than could be achieved alone. It also gives participants greater confidence than if they had not worked with an experienced professional.

Late-identified people may find out they are autistic in their later school years, teen or college years, or even in adulthood. Some of these people may have children who are also autistic, which helps lead them to the realization of their autism. Some may have been diagnosed with other conditions in the past, such as anxiety, depression, or ADHD. They may also be autistic on top of one or more of these other diagnoses, or those other conditions may have been incorrect diagnoses that further hid their autism.

Being identified late can bring significant improvements to an autistic person’s quality of life. That is because autism brings about social, communication, and sensory challenges. If it is unrecognized, those challenges go unexplained or misunderstood.

In this blog post, I will share the story of my daughter, who was diagnosed with autism at the age of 15, after several failed interactions and evaluations by different professionals. I will also discuss some of the reasons why late autism identification can happen and how to increase awareness and understanding of the diverse presentations of autism in different individuals.

My Daughter’s Journey to Late Autism Diagnosis

My daughter was evaluated for autism twice before the age of three due to delayed speech, but her strong receptive language skills and overall intelligence led to her evaluators confidently dismissing those concerns. She still qualified for a fully-funded early intervention preschool, and I sent her to a private speech therapist for three years. Before the age of fourteen, she underwent evaluations from two different psychologists and a licensed clinical social worker. The second of the psychologists treated her for moderate anxiety symptoms for two months when she was eight years old. Not one of these professionals ever even mentioned autism.

At her intake visit on the third occasion, my daughter shared some concerns about what was bothering her with the social worker. Without ever exchanging a single word with me (the parent who accompanied her adolescent child to the visit), this clinician diagnosed her with misophonia, a dislike of certain sounds, and ruled out autism. It all took around 15 minutes. The social worker's professional imprudence in leaving me out of the conversation shocked me. After this encounter, my daughter was hesitant to try out a new clinician because of what she described as dismissive treatment. It took another year for her to reach a point where she told me through tears that she felt “unlikeable” for me to immediately head to a private practice, where we were finally on the path toward her truth.

Why Late Autism Diagnosis Can Happen

Unfortunately, stories like these are not uncommon. Autism can be missed during cursory evaluations, and individuals are usually not referred for evaluation at all if, for instance, they can manage eye contact and handle surface-level small talk. They may also have learned to mask or camouflage their autistic traits, either consciously or unconsciously, to fit in with social norms and expectations. This can be especially true for autistic women and girls, who are often underdiagnosed or misdiagnosed due to gender stereotypes and biases.

Furthermore, many autistics are initially misdiagnosed with anxiety, depression, or ADHD. These conditions do occasionally co-occur with autism, but if autism is not recognized, major underlying sources of challenges will continue to go unnoticed and unaddressed. For example, some autistic people may experience sensory overload, executive dysfunction, or social anxiety, which can affect their daily lives and well-being. Without a proper diagnosis of autism, they will not understand the true source of their challenges and won't be able to adapt their lives so that they are more comfortable and happy.

How to Increase Awareness and Understanding of Late Autism Diagnosis

Our understanding of the various presentations that autism can take in different people has increased in recent years. It is a blessing that societal awareness of the condition is improving. Identification can lead to much improved mental health and quality of life for autistic people. It allows us to gain a better understanding of ourselves and our needs. Then we can access relevant resources and services and connect with other autistic communities and allies. That is what motivates me to work to destigmatize autism and spread awareness about the varying ways it can present in different people. I hope that with many of us working together, unidentified autism can be recognized earlier and people can be empowered with knowledge of their truth sooner.

If you suspect autism in yourself or someone you know under the age of eighteen, meeting with me along with your parents can help your family determine if seeking out a certified professional who can provide official diagnoses for autism should be your next step.

If you are over 18 and/or still in college or university, we would discuss together the benefits of a formal diagnosis versus working with me in my guided self-assessment process. Each individual is different and has different needs and priorities, so this process will look different for everyone.

For those who are over twenty-one and/or already in the workforce, my guided self-assessment process is probably right for you. Getting officially evaluated over twenty-one can be a challenge, in America at least. Further, there are few, if any, governmental resources available to autistic individuals after the age of 21. For most people who have made it to adulthood without their autism being identified, simply finding out their truth opens the door to so much growth, positive change, and improved self-image. Within the guided process itself, I will help you understand more about autism in general, and together we can determine how it may have been affecting you.

You can also check out some online resources and self-assessments that can help you explore your possible autistic traits. Remember that being autistic is not a defect or a disorder, but a natural variation of human neurodiversity.

Benefits of Late Autism Diagnosis

Late autism diagnosis may seem like a daunting and overwhelming process, but it can also bring many benefits and advantages for autistic people and their loved ones. If you choose to do a guided self-assessment with me, I do everything I can to lessen the overwhelming aspects of the process and to help you understand both autism and yourself better. A late autism diagnosis can help autistic people gain a better understanding of themselves, their strengths, and their challenges. They get access to the appropriate support and accommodations that they need. Late autism diagnosis can also help autistic people connect with other autistic communities and allies and celebrate their identity and diversity. Here are some of the benefits of late autism diagnosis and how it can improve the mental health and quality of life of autistic people.

1. Self-understanding and Acceptance

One of the main benefits of late autism diagnosis is that it can help autistic people gain a deeper and more accurate understanding of themselves, their behaviors, and their emotions. Many autistic people who are diagnosed later in life may have experienced years of confusion, frustration, and self-doubt. They have tried to fit in with social norms and expectations that do not match their natural way of being. They may have also faced rejection, bullying, or discrimination from others who did not understand or appreciate their differences. They may have developed low self-esteem, depression, anxiety, or other mental health issues.

A late autism diagnosis can help autistic people make sense of their past and present experiences and recognize that they are not broken or defective but simply different. They can learn more about their autistic traits, such as sensory sensitivities, special interests, communication styles, and executive functioning skills, and also learn strategies for handling related challenges. As well, they can identify their strengths and talents, such as creativity, honesty, loyalty, attention to detail, analytical thinking, and a passion for learning. They can embrace their uniqueness and diversity and accept and learn to love themselves as they are.

2. Support and Accommodations

Another benefit of late autism diagnosis is that it can help autistic people access the relevant support and accommodations that they need to thrive in their personal and professional lives. Many autistic people who are diagnosed later in life may have struggled with various challenges that affect their daily functioning and well-being, such as sensory overload, social anxiety, executive dysfunction, or burnout. They may have also faced barriers or difficulties in education, employment, health care, or relationships.

A late autism diagnosis can help autistic people advocate for themselves, make important changes in their lives, and request support and accommodations from others that can make their lives easier and more enjoyable. For example, they may seek out therapy or counseling to address their mental health issues or trauma. They may ask for reasonable adjustments in their workplace or school, such as flexible hours, quiet spaces, clear instructions, or assistive technology. They may also seek out resources or services that can help them with practical skills or personal development, such as life coaching, career guidance, social skills training, or financial management.

3. Community and Identity

A third benefit of late autism diagnosis is that it can help autistic people connect with autistic communities and allies and discover a sense of belonging and identity. Many autistic people who are diagnosed later in life may have felt isolated, misunderstood, or different from others for most of their lives. They may have also faced stigma, prejudice, or discrimination from society, which can affect their self-esteem and confidence.

A late autism diagnosis can help autistic people find and join autistic communities and allies, both online and offline, where they can share their experiences, stories, and insights with others who can relate and empathize. They can also learn from and support each other, exchange information and resources, and advocate for their rights and needs. In addition, they can begin to celebrate their identity and diversity and take pride in being part of the autistic community.

Conclusion

Late autism diagnosis is a term that refers to people who are diagnosed with autism spectrum disorder (ASD) after grade school age (generally after 12 or 13 years old). Late autism diagnosis can happen for various reasons, such as prior lack of awareness or misdiagnosis, masking, or gender bias. A late autism diagnosis can bring many benefits, such as self-understanding and acceptance, support and accommodations, and an improved sense of community and identity.

In this blog post, I have shared the story of my daughter, who was diagnosed with autism at the age of 15, after several failed assessments and evaluations by different professionals. I have also discussed some of the challenges and advantages of late autism diagnosis and how to increase awareness and understanding of the diverse presentations of autism in different individuals.

I hope that this blog post has been informative and helpful for you, whether you are an autistic person, a parent, a professional, or an ally. Thank you for reading!