Life After a Late Autism Diagnosis
If you have recently been diagnosed with autism as an adult, you may be wondering “what does this mean for me moving forward?” Everyone has a different reaction to life changing news. Whether it is difficult to accept, confusing to process, or everything just makes sense, it’s important to sort through all feelings that surface. Understanding how this change alters your current life's meaning will help you take the next steps to improve your overall well-being and live a life that feels more meaningful.
Reasons for a Late Diagnosis
Over the years, significant strides have been made in autism diagnosing, with several of the improvements being made to diagnostic criteria, diagnostic tools, and overall recognition of autism. Research suggests that the majority of late autism diagnosis have occurred prior to the growing recognition, specifically to children and adolescents who presented with milder symptoms (Lupindo, Maw, & Shabalala, 2022). Considering this information, in clinical practice, it’s understood that late diagnosing is still occurring, but conscious steps are taken to decrease this rate. Through research and awareness, several reasons for a late autism diagnosis have been revealed. Some of these reasons include:
Masking- Some autistic individuals may hide their symptoms to fit in, avoid bullying, and to increase connections with others.
Stigma- Families or parents may be reluctant to seek help for their child or follow through with the evaluation process due to shame, denial, and embarrassment.
Cost- Some people may not have access to appropriate care or they are unable to afford the costs of diagnosing.
Diagnostic checklists- These checklists are limited and are designed to identify and diagnose autism in children.
Lack of providers and lack of provider awareness - There are few providers that are available to diagnose autistic adults, adequately trained to recognize autism in adults, or are qualified to support and treat autism.
Other diagnoses- An adult may have already been treated for other conditions like ADHD, anxiety, or depression before receiving an autism diagnosis. This can make it difficult for providers to identify underlying autistic traits as some of the symptoms overlap with each other.
Impacts of a Late Diagnosis:
Receiving a late autism diagnosis poses various challenges for adults as they are faced with navigating daily autism related challenges without the knowledge and understanding of them (Lupindo, Maw, & Shabalala, 2022). Some of these challenges relate to the barriers in accessing appropriate healthcare and support, co-occurring disorders, and negative impacts across varied life domains.
Barriers to accessing healthcare and support- Adults diagnosed late often encounter greater challenges than those diagnosed early. One significant barrier is limited availability and experience of specialized medical providers and support services that are trained and educated to support autistic adults (Stagg & Belcher, 2019). This can make it difficult for individuals to access appropriate diagnostic evaluations, resources, and therapeutic services.
Self-esteem- A late autism diagnosis can have a profound impact on an individual’s self-esteem. An autistic individual’s identity may be questioned as they have spent years trying to comply with neurotypical expectations. For example, one way autistic individuals tend to cope with their challenges and conform to society’s standard is by masking. Masking involves actively suppressing autistic traits to conform to society while disconnecting from one’s authentic self. This unhealthy coping skill is detrimental to one’s self-esteem as it creates identity issues and increases the risk of suicidal thoughts.
Co-occurring conditions- Adults diagnosed later in life are more susceptible to having co-occurring disorders like depression, anxiety, and other mental health conditions than those who were diagnosed earlier. Some individuals with autism have reported experiencing suicidal ideation due to the lack of insight into their challenges and feelings of isolation ( Lupindo, Maw, & Shabalala, 2022)
Employment-Adults who are diagnosed late with autism have a more difficult time retaining and maintaining employment due to the unique characteristics of autism. Challenges surface with expressing or sharing their diagnosis, asking for help, or communicating needs. (Stagg & Belcher, 2019).
Relationships: Notable challenges are reported in developing and maintaining relationships due to difficulties with social communication and understanding social cues.
Positive impacts: Although there are a variety of negative impacts on a late autism diagnosis, it can also provide relief and explanations for past experiences and challenges. Autistic adults have reported that being diagnosed with autism provided clarity, relief, and increased their understanding of ASD related challenges (Stagg & Belcher, 2019). Furthermore, autistic adults were able to access resources that would aid in their self-exploration and independence after a diagnosis.
Coping with a Late Autism Diagnosis
It can be overwhelming to process a life-changing diagnosis. Your sense of self, past experiences, and future opportunities are now being challenged and it may create feelings of self-doubt, shame, inadequacy, and confusion. It is essential for you to take healthy steps towards gaining control over your current circumstances by addressing your mental health needs and develop strategies that will allow you to embrace and navigate your unique experiences. Below are 5 ways to help you cope with a late autism diagnosis as an adult.
1. Take time to process
Your world has shifted and your thoughts are running a marathon. You’re reflecting on the past, piecing experiences together, grieving, all while feeling shocked, relieved, or disappointed. There are SO many emotions pouring into this change and it is important to slow the pace down and allow yourself to think. Carve out time to focus on identifying your strengths, challenges, and letting go of self-blame or shame. By understanding that the struggles you experienced were not due to incompetence, but rather a manifestation of your neurodivergent traits, you’ll have an easier time embracing life through a new lens and have a greater appreciation for your individual needs.
2. Seek professional help
Receiving a late diagnosis is heavy to process, but you don’t have to do it alone. Choosing a therapist who specializes in autism is essential in the transformative process of a late diagnosis, especially in the re-evaluation stage. Coming to the realization that the adversities faced in life could have been avoided or managed better, with an earlier diagnosis, can be difficult to accept. Therefore, having a safe space for you to navigate these uncomfortable or painful emotions will help you manage any stressors or anxieties that may surface. Autism specialists can help you establish greater self-awareness through the autism diagnosis, help you cope and develop strategies to manage reactions, integrate your new understanding into oneself, and share resources that can help you continue searching for the appropriate support moving forward.
3. Find Acceptance
Although acceptance can be fairly difficult to reach, it is a crucial step in the emotional journey of a late diagnosis. Acceptance involves embracing one’s neurodivergence, understanding that autism is your essence, and recognizing the value you provide to others. Acceptance ultimately brings peace and we want to recognize that it takes time to achieve it. Allow it to be a goal for you to work towards on your emotional journey to self-discovery and understanding.
4. Join a support group and lean on supports
Support groups and support systems, such as family or friends, can help others feel valued, heard, and understood. It develops a sense of community that helps promote feelings of a sense of belonging and solidarity. In self-reporting research, autistic individuals have shared that with the comfort from individuals within the autism community they were able to navigate life in a supportive environment in a healthier way (Stagg & Belcher, 2019). It was shared that valuable advice, empathy, and insight was effective at building a positive self-esteem and increased feelings of belonging. Additionally, individuals with autism shared that when their family members or friends became educated and understood autism and its challenges, individuals felt comfortable and safe to be their authentic self (Stagg & Belcher, 2019).
5. Develop Healthy Coping Skills
While beginning the long process of introspection, adults diagnosed late with autism need to develop coping strategies that will help manage the challenges they will face on this journey. Some of the coping strategies could include, seeking support, addressing mental health needs, identifying your support system, setting realistic expectations, grounding skills, and self-care activities. This will allow adults with autism to nurture themselves while navigating their unique experience. Remember to acknowledge that everyone’s journey is different and stay focused on identifying strategies that work best for you.
Notes:
Identity-first language (autistic adults) and person-first language (adults with autism) are utilized throughout this blog to be inclusive to individuals of either preference. Although the majority of individuals within the autism community prefer identity-first language, it is important to recognize that there are others who do not. Therefore, it is crucial that we prioritize respecting all preferences on which language is most comfortable to use and not assume that “one size fits all.” We can also do this by asking or encouraging individuals within the autism community to share how they would like to be addressed.
References:
Lupindo, B.M., Maw, A. & Shabalala, N. Late diagnosis of autism: exploring experiences of males diagnosed with autism in adulthood. Curr Psychol 42, 24181–24197 (2023). https://doi.org/10.1007/s12144-022-03514-z
Stagg, S. D., & Belcher, H. (2019). Living with autism without knowing: receiving a diagnosis in later life. Health Psychology and Behavioral Medicine, 7(1), 348–361. https://doi.org/10.1080/21642850.2019.1684920