Late-Diagnosis Autism: What Happens When Parents Learn They Also Have ASD?

In recent years, a fascinating trend has emerged in the autism community: parents of autistic children are increasingly discovering that they themselves are on the autism spectrum. This phenomenon of “late-diagnosis autism” among parents is shedding new light on the hereditary nature of autism, the evolving understanding of neurodiversity, and the complex interplay between genetics and environment in shaping neurodevelopmental differences.

For decades, autism spectrum disorder (ASD) was primarily diagnosed in children, often in early childhood. The focus on early intervention and support for autistic children has been crucial in improving outcomes and quality of life for many individuals.

However, this child-centric approach to autism diagnosis and support has inadvertently left many adults undiagnosed and unsupported.

The Growing Trend of Late-Diagnosis Autism

As awareness of autism has grown and diagnostic criteria have expanded, more adults are realizing they may be autistic. Parents of autistic children are often at the forefront of this trend.

The journey of supporting an autistic child frequently leads parents to a deeper understanding of autism and, in many cases, recognition of autistic traits in themselves.

Dr. Sarah Thompson, a clinical psychologist specializing in adult autism diagnosis, notes that a diagnosis of ASD in adults can be life-changing. She says, “We’re seeing a significant increase in parents seeking autism assessments after their children are diagnosed or just adults in general (with or without kids of their own). It’s often a moment of profound self-discovery for these adults who have spent their lives feeling different but not understanding why.”

I posed the question on my Facebook page about adults getting diagnosed, and whether they are glad they did or if they regret it. The responses I received to date have all agreed that an affirming diagnosis has helped them to better understand themselves. Comments have included:

• “It’s helped me to better understand myself, and why I sometimes react or respond in a certain way. I now know why I can’t do small talk.”
• “I’m kinda happy I got diagnosed with autism, it’s made me who I am.”
• “I’ve always known that I was different and felt out of place, but I never knew why.”
• “It gave me some understanding on why I was the way I was growing up. I was awkward, info dumped on things I loved. And it helped me understand why I never really had friends, because I was different and didn’t fit in.”
• “I was diagnosed at 44. I’m glad I got the diagnosis, because it explained so much about the various issues I have faced … I’m now more confident in my abilities than I have ever been, but I just wish I could have been tested and diagnosed when I was younger.”

(But this dialogue is just getting started, and I’d love for you to join the Facebook discussion!)

Reasons Behind the Trend of Diagnosis of ASD in Adults

Several factors contribute to the increasing number of parents receiving autism diagnoses after their children:

• Increased Awareness and Understanding
  As parents learn about autism to support their children, they often encounter information that resonates with their own experiences. This increased awareness can lead to recognition of autistic traits in themselves that they may have previously dismissed or not understood.
  
  
  
• Genetic Link
  Research has consistently shown that autism has a strong genetic component. Studies suggest that autistic individuals are more likely to have autistic children compared to the general population. This genetic link means that when a child is diagnosed with autism, there’s an increased likelihood that one or both parents may also be on the spectrum.

  Currently,  no genetic test for autism exists, as genetic tests don’t diagnose ASD. However, tests can look for factors that could increase the chance of autism occurring.

  While a genetic test for autism isn’t available, genetic testing may be able to determine if a child’s autism is genetic, which comes from analyzing DNA from a blood sample. The findings could potentially  be helpful by assisting with treatment decisions or related conditions, for example.

  However, most parents choose to go through an independent evaluation to determine if they are also autistic rather than the genetic test route.

• Evolving Diagnostic Criteria
  The understanding of autism has broadened significantly over the past few decades. The diagnostic criteria now encompass a wider range of traits and experiences, recognizing autism as a spectrum rather than a narrow set of behaviors.

  This expanded understanding has made it possible for more individuals, including those who may not fit traditional stereotypes of autism, to receive diagnoses.

• Masking and Compensation
  Many adults have unknowingly “masked” or compensated for their autistic traits for years. Masking involves consciously or unconsciously hiding autistic behaviors to fit in with neurotypical social norms. When parents see their children exhibiting similar traits without masking, it can lead to recognition of their unmasked autistic traits.
  
  
  
• Improved Diagnostic Tools for Adults
  As the need for diagnosis of ASD in adults has become more apparent, clinicians have developed and refined diagnostic tools specifically for adults. These tools are better equipped to identify autism in individuals who have developed coping strategies.

The Impact of Late-Diagnosis Autism

Receiving a diagnosis of ASD in adults, particularly after one’s child has been diagnosed, can be a profound and life-changing experience. The impact of this discovery is often multifaceted:

• Self-Understanding and Clarity
  For many adults, an autism diagnosis brings a sense of clarity and self-understanding that they’ve never experienced before. It can provide explanations for lifelong struggles, differences, or feelings of not fitting in. Many feel relieved at finally having a framework to understand their experiences.

  John, a 42-year-old father of an autistic daughter, shares, “When I received my diagnosis, it was like someone had finally given me the user manual for my own brain. So many things about my life suddenly made sense.”

• Reevaluation of Past Experiences
  A diagnosis of ASD in adults often prompts individuals to reevaluate their past experiences through the lens of autism. This can lead to new insights about past challenges, relationships, and life choices. While this reevaluation can be enlightening, it can also be emotionally challenging as individuals process missed opportunities or misunderstandings.
  
  
• Identity and Self-Acceptance
  For some, an autism diagnosis becomes an important part of their identity. It can foster a sense of belonging to the autistic community and promote self-acceptance. However, others may struggle with incorporating this new understanding into their existing sense of self.
  
  
• Improved Self-Advocacy
  Understanding oneself as autistic can empower individuals to better advocate for their needs in personal and professional settings. This can lead to improved quality of life as individuals learn to create environments and routines that support their neurology.
  
  
• Enhanced Parenting Insights
  For parents of autistic children, their own diagnosis often enhances their ability to understand and support their child. Shared experiences can foster deeper connections and more effective parenting strategies.
  
  
• Complex Emotions
  A late diagnosis can bring complex and sometimes conflicting emotions. While many feel relief and validation, some may experience grief for the support they didn’t receive earlier in life. Others may feel guilt about not recognizing their own autism earlier, especially if they feel it impacted their parenting. That’s where a genetic test for autism may be useful.

Challenges of Late-Diagnosis Autism: Diagnosis of ASD in Adults

While a late autism diagnosis can be incredibly beneficial, it also comes with unique challenges:

• Limited Support Services
  Many autism support services are geared towards children and young adults. Late-diagnosed adults may struggle to find appropriate support services tailored to their needs.
  
  
• Professional Impact
  Disclosing an autism diagnosis in the workplace can be complex. While it can lead to better accommodations and understanding, some adults fear stigma or discrimination.
  
  
  
• Relationship Dynamics
  A new autism diagnosis can impact existing relationships. Partners, family members, and friends may need time to adjust to this new understanding, which can sometimes lead to strain in relationships.
  
  
• Internalized Ableism
  Years of trying to conform to neurotypical expectations can lead to internalized ableism, making it difficult for some adults to accept and embrace their autism.
  
  
• Navigating the Autistic Community
  Entering the autistic community as a late-diagnosed adult can be both welcoming and challenging. Some may feel they don’t fully belong due to their different life experiences compared to those diagnosed earlier.

The Broader Implications of a Genetic Test for Autism Or Diagnosis of ASD

The trend of parents receiving a diagnosis of ASD in adults after their children has broader implications for our understanding of autism and neurodiversity:

• Lifespan Perspective
  It highlights the need for a lifespan perspective on autism. Autism doesn’t suddenly appear in childhood – it’s a lifelong neurodevelopmental difference that can manifest differently at various life stages.
• Genetic Research
  The frequency of multi-generational autism diagnoses underscores the importance of genetic research in understanding autism. It may lead to new insights into the hereditary aspects of autism and potential environmental triggers.
• Diagnostic Practices
  The trend challenges current diagnostic practices, suggesting a need for more routine screening of parents when children are diagnosed with autism.
• Support Services
  It emphasizes the need for support services that cater to autistic adults, including those diagnosed later in life.
• Neurodiversity Awareness
  Late diagnoses in adults who have been “masking” successfully for years challenge stereotypical views of autism and promote a more nuanced understanding of neurodiversity.
• The Ripple Effect: Beyond the Individual
  The discovery of autism in parents of autistic children often creates a ripple effect that extends far beyond the individual or immediate family. This phenomenon has implications for extended family dynamics, professional settings, and society at large.
• Extended Family Dynamics
  When a parent receives a diagnosis of ASD in adults, it can prompt a reevaluation of family history. Suddenly, traits or behaviors of grandparents, aunts, uncles, or cousins might be viewed through a new lens. This can lead to a greater understanding of family dynamics and potentially even more diagnoses within the extended family.

  Sarah, a mother of two autistic children who received her own diagnosis at 45, shares, “After my diagnosis, I started recognizing autistic traits in my father. It explained so much about our relationship and some of the misunderstandings we’ve had over the years. It’s opened up new conversations and brought us closer.”

  This newfound understanding can foster empathy and improve relationships. However, it can also bring challenges, particularly if some family members are resistant to the idea of neurodevelopmental differences or hold outdated views about autism.

Professional Implications of a Diagnosis of ASD in Adults

In the workplace, adults who receive a late autism diagnosis face decisions about disclosure. While revealing their diagnosis can lead to helpful accommodations and greater understanding from colleagues, it can also lead to misconceptions or discrimination in some cases.

Many late-diagnosed adults report that understanding their autism allows them to advocate for work environments that better suit their needs. This might include requesting written instructions, noise-canceling headphones, or flexible work hours.

Some even find that their diagnosis empowers them to pursue careers more aligned with their autistic strengths. Fields that require attention to detail, pattern recognition, or deep focus on specific topics often appeal to autistic individuals.

As more adults receive autism diagnoses, it challenges societal perceptions of what autism “looks like.” This increased visibility of autistic adults in various roles – as parents, professionals, and community leaders – helps to break down stereotypes and promote a more nuanced understanding of neurodiversity.

Dr. Emily Chen, a sociologist studying neurodiversity, notes, “The trend of parents receiving autism diagnoses is forcing a recalibration of how we think about autism. It’s no longer just the non-verbal child or the socially awkward savant. We’re seeing that autistic individuals can be successful parents, professionals, and contributing members of society in myriad ways.”

Implications for Healthcare and Education

The rise in adult autism diagnoses has significant implications for healthcare and education systems.

Many healthcare providers are not adequately trained to recognize or support autism in adults. This knowledge gap can lead to misdiagnoses, inappropriate treatments, or failure to provide necessary accommodations.

Dr. Marcus Lee, a psychiatrist specializing in adult autism, explains, “We’re seeing a need for increased training in adult autism across all healthcare specialties. From general practitioners to specialists, understanding how autism presents in adults is crucial for providing appropriate care.”

There’s a growing call for autism screening to be incorporated into routine adult healthcare, much like screenings for other conditions. This could help identify individuals who have gone undiagnosed and provide them with appropriate support.

In the education sector, the increase in adult diagnoses highlights the need for lifelong learning support for autistic individuals. Adult education programs may need to adapt to accommodate diverse learning styles and sensory needs.

Furthermore, as more parents receive diagnoses, there’s potential for improved home-school collaboration in supporting autistic children. Parents with lived experience of autism may be better equipped to advocate for their children’s needs in educational settings.

The concept of the “double-empathy problem,” proposed by autistic scholar Dr. Damian Milton, becomes particularly relevant in the context of late-diagnosed autistic parents. This theory suggests that the communication difficulties between autistic and non-autistic individuals are bidirectional – both groups struggle to understand and empathize with each other.

For late-diagnosed parents, this concept can provide a framework for understanding past social challenges. It can also inform their approach to supporting their autistic children, recognizing that the goal isn’t to make their children “fit in” with neurotypical norms, but to foster mutual understanding and respect for diverse neurotypes.

For many late-diagnosed adults, connecting with the autistic community becomes a crucial part of their journey. Online forums, support groups, and autistic-led organizations provide spaces for sharing experiences, seeking advice, and finding acceptance.

However, navigating this community can be complex. Some late-diagnosed individuals report feeling caught between the neurotypical and autistic worlds, not fully belonging to either. Others find immense relief and validation in connecting with fellow autistic adults.

Looking to the Future: Diagnosis of ASD in Adults

As we continue to expand our understanding of autism across the lifespan, several key areas require attention:

• Research: More studies are needed on the experiences and needs of late-diagnosed autistic adults, particularly parents.
• Diagnostic Tools: Continued refinement of diagnostic tools for adults is crucial, ensuring they capture the diverse presentations of autism in adulthood.
• Support Services: Development of support services tailored to late-diagnosed adults, addressing their unique challenges and leveraging their life experiences.
• Education and Awareness: Broader education about adult autism for healthcare providers, educators, employers, and the general public.
• Neurodiversity Movement: Continued growth of the neurodiversity movement, promoting acceptance and celebration of neurological differences.

The phenomenon of parents receiving autism diagnoses after their children represents a significant shift in our understanding of autism. It highlights the lifelong nature of autism, the diversity of autistic experiences, and the complex interplay between genetics, environment, and personal development.

For individuals experiencing this journey of late diagnosis, it can be a profound process of self-discovery, challenges, and ultimately, self-acceptance. For society, it’s an opportunity to broaden our understanding of neurodiversity and create more inclusive environments for individuals across the spectrum of neurological differences.

As we move forward, centering autistic voices – including those diagnosed later in life – will be crucial in shaping research, policies, and support services. The insights gained from these experiences have the potential to enhance our understanding not just of autism, but of the rich tapestry of human neurodiversity.

The Evolution of Autism Diagnosis

As our understanding of autism continues to evolve, it’s likely we’ll see more adults – including parents – receiving diagnoses. This trend highlights the importance of lifelong autism awareness and support for individuals across the spectrum.

Dr. Thompson concludes, “Late-diagnosis autism in parents of autistic children is not just a personal journey of discovery. It’s reshaping our understanding of autism across generations and challenging us to think more broadly about neurodiversity throughout the lifespan.”

For parents embarking on this journey of self-discovery, it’s important to remember that an autism diagnosis – whether early or late – doesn’t change who you are. Rather, it provides a new lens through which to understand yourself and your experiences. It can be the key to unlocking greater self-acceptance, more effective self-advocacy, and a deeper connection with your autistic child.

As we move forward, continued research, improved diagnostic practices, and expanded support services for autistic adults will be crucial. Equally important is fostering a society that embraces neurodiversity, recognizing the unique strengths and challenges of autistic individuals at all ages and life stages.

The journey of late-diagnosis autism for parents is a powerful reminder of the diversity of autistic experiences and the ongoing evolution of our understanding of neurodevelopmental differences. It underscores the fact that autism is not just a childhood condition, but a lifelong way of being that can bring both challenges and strengths.

As more parents embark on this journey of self-discovery alongside their children, they pave the way for greater understanding, acceptance, and support for autistic individuals of all ages.

Parents and Children Unite:  Navigating Neurodiversity Together

The rising trend of parents discovering their own autism after their children’s diagnoses marks a pivotal shift in our understanding of neurodevelopmental differences. This phenomenon illuminates the lifelong nature of autism, challenges long-held stereotypes, and underscores the complex interplay of genetics and environment in shaping human neurodiversity.

For late-diagnosed parents, this journey of self-discovery often brings a mix of clarity, challenge, and ultimately, self-acceptance. It can transform family dynamics, enhancing empathy and fostering deeper connections between autistic parents and their children. 

It also frequently leads to improved advocacy skills, benefiting both themselves and their children in navigating a predominantly neurotypical world.

On a broader scale, this trend is reshaping societal perceptions of autism. It demonstrates that autistic individuals can and do lead fulfilling lives as parents, professionals, and community members, contributing their unique perspectives and abilities to society. This visibility is crucial in dismantling outdated notions of what autism “looks or feels like” and promoting an understanding of neurodiversity.

Looking ahead, the implications of this phenomenon are far-reaching. It calls for a lifespan approach to autism research, diagnosis, and support. It highlights the need for improved healthcare and education systems that recognize and accommodate neurodiversity in adults as well as children. And it underscores the importance of creating more inclusive societies that value diverse neurological profiles.

As we continue to learn and grow in our understanding of autism and neurodiversity, one thing becomes clear: there is no single autism story. Each individual’s journey is unique, whether diagnosed as a child or an adult. In these diverse stories lies the potential for a better appreciation of the ways human brains can function and thrive.

Autism in Adults:  Living, Learning, and Overcoming Challenges for a Fulfilled Life

Autism in adults requires additional support and coping skills to achieve independence in today’s world.

Learn more about ways adults can live fulfilled lives and the challenges they face.

• 14 Practical Ways for Staying Motivated to Unlock Full Potential
• Autism and Independence: 7 Skills That Empower Individuals to Thrive
• Are We Overly Romanticizing Autism to the Public?
• Autism on the Brain: Unpacking the Meaning Behind Neurodiversity
• Autism Volunteer Opportunities: 5 Ways Helping Others Fosters Acceptance
• 8 Heartfelt Ways Autism Emotional Support Animals Transform Lives
• Are You An Adult With Autism? Here Are 6 Signs
• Autism After High School:  Is College the Next Step?
• Autism vs Asperger’s Syndrome: What You Need to Know
• Autism Disclosure: Is Revealing Your Disorder Helpful or Hurtful?
• Work and Autism: What Employers Should Know About Hiring People with Neurodiversity
• Drivers with Autism Can Achieve Success Behind the Wheel
• Growing Up Autistic: How I Overcame Challenges and Now Thrive