The first time I heard the word autism being attached to my child felt like a huge slap in the face. In my head, my child was just quirky—like my spouse. I knew what an autism diagnosis meant and it wasn’t a journey I wanted to be on.
As I have ventured further into neurodivergent parenthood, I realized a few things about my initial reaction to my child’s autism diagnosis:
- It was grounded in misinformation that I had gleaned from pop psychology and unschooled media sources. We know more about autism nowadays, but there is a lingering negative stigma attached to it.
- I was unaware of my own neurodivergent diagnosis and how it could shape my ability to parent children with other neurodivergent diagnoses.
- I was unaware of the generations in our family who suffered and struggled with undiagnosed neurodivergence.
- There is a vibrant neurodivergent community waiting in the shadows of neurotypical society to embrace newly diagnosed and self-diagnosed individuals.
- These individuals are hard-working advocates for their needs and desires, but education and medical professionals often overlook or even ignore their input.
So what exactly are the pros and cons of an Autism Diagnosis?
As a neurodivergent mom, you probably have fears about how others may treat your child after they receive an official diagnosis. Let me reassure you that all of your feelings are valid. Even the “negative” ones that bring you a load of mom-shame.
Many of us neurodivergent parents grapple with this decision, weighing the potential benefits and drawbacks. On one hand, a diagnosis can open doors to support and services. On the other hand, it can bring about labeling and misconceptions that may impact your child’s opportunities. Understanding the pros and cons can help you decide how best to support your child.
So let’s gently look at the common pros and cons:
Pros of an Autism Diagnosis
1. Personalized Supports and Early Interventions
An autism diagnosis opens doors to specialized services designed specifically for autistic individuals, like educational assistance and interventions. Early diagnosis can be particularly impactful. Many pediatricians and preschool education experts advocate for this in their belief that the sooner a child receives appropriate support, the greater the potential for improvement in areas of their life, like communication and social skills, play and academic skills, and independence. Intervention is a loaded word for the autistic community and there is a great division among adults who had “early interventions” and resent the negative impacts on their childhood. As I navigated my way through my child’s preschool age diagnosis, it became clear that certain strategies did not align with my values. Remember that you are the best expert on your child. I like to take the approach that all recommendations regarding my child’s neurodivergent diagnosis are just that—recommendations. My spouse and I evaluate everything that comes our way and choose what best fits our values.
2. Legal Protections and Accommodations
Laws like the Americans with Disabilities Act (ADA) and similar legislation mandate important legal protections in places of employment and educational settings with a formal diagnosis. These usually fall under either an Individual Education Plan (IEP) or a 504 Plan in a public school setting. These might include extended test times, modified work schedules, or sensory-friendly environments and can significantly enhance an individual’s ability to succeed and thrive in various settings. As a neurodivergent parent, I encourage parents in a similar situation to gather information from multiple sources. Special education advocates can be wonderful, but they are not the expert on your child. Having a private advocate to advise you or even accompany you in official meetings can be extremely valuable.
3. Connection to Community and Family Empowerment
An autism diagnosis can open the door to supportive communities, benefiting both your child and your family. Connecting with others who share similar experiences can help you feel less isolated and build a valuable support network. These communities offer shared wisdom and mutual understanding that can help you know what to expect from the assessment process. A diagnosis can also finally validate your observations and concerns, providing a roadmap for the best steps to take. This is one of the most powerful opportunities that exists for neurodivergent moms. There are many vibrant online neurodivergent communities.
4. Financial and Specialized Care Assistance
In some areas, a diagnosis can unlock financial support or insurance coverage for certain therapies and services, making interventions more accessible and alleviating the financial stress often associated with specialized care. A diagnosis may also qualify the individual for state-provided benefits, such as respite care or in-home services. Check with your state’s developmental disabilities agency. Again, the term interventions can be a loaded statement for autistic adults. Not all interventions are needed. The most important thing I learned early on in my child’s autism diagnosis is that my child’s overall well-being mattered the most. If a recommended therapy did not match my values, we did not pursue it. I refused some recommended parenting classes because I knew my child was dysregulated and not disobedient.
5. Societal Progress and Policy Advancement
The rise in autism diagnoses is driving significant changes in both society and policy. With increasing awareness, neurodivergent people are sharing their lived experiences in neurotypical settings such as schools, universities, medical and government communities to promote inclusivity within these environments and create spaces that genuinely understand and value neurodiversity. This shift influences funding allocations and drives initiatives that offer better support systems and foster a deeper understanding of the challenges a neurodivergent child faces. The result is synergistic: as society becomes more inclusive, it demands better support and further promotes acceptance and accommodation. This continuous cycle of progress enhances services, develops more nuanced research, and leads to policy changes that benefit the autistic community. Ultimately, this collective effort paves the way for a more equitable world that embraces all neurotypes.
6. Self-Discovery and Awareness
Many people find that receiving an autism diagnosis helps them make sense of their own experiences and provides a foundation for self-discovery. With this new understanding comes the possibility of greater self-acceptance and the acceleration of personal growth. For many, it validates their lived experiences and empowers them to advocate for their needs. However, the impact of this self-discovery varies significantly based on an individual’s age, cognitive abilities, and level of self-awareness. Young children or those with more profound cognitive differences may not experience this benefit in the same way as older or more cognitively able individuals.
As we explore the benefits, it’s equally important to consider the potential challenges of an autism diagnosis.
Cons of Autism Diagnosis
1. Labeling, Lowered Expectations, and Risk of Oversimplification
Unfortunately, educators and employers have preconceived notions of an autism diagnosis that box individuals into limiting stereotypes. This can stifle achievement and diminish the importance of each person’s unique strengths. Advocating for fair treatment means educating those around us to see beyond the label, ensuring opportunities aren’t unfairly restricted. There’s also a risk of oversimplification—of attributing all behaviors and challenges solely to autism. This myopic perspective may fail to consider the other integral aspects of a person’s life, like co-occurring conditions, personal preferences, and environmental failures and influences.When we overlook co-occurring conditions like ADHD, anxiety, or depression, individuals often miss out on the comprehensive care they need. Ignoring personal preferences can lead to support strategies that don’t fit well, causing frustration and slowing progress. When we ignore these factors, it can lead to inadequate support.
2. “Over-medicalization” Viewpoint and Oversight of Strengths
The long-held medical perspective on diagnosing autism focuses solely on the ‘symptoms’ of autism as an ‘illness’ that needs treatment or ‘fixing.’ This perspective often overshadows an individual’s abilities and strengths, again obstructing the potential for unhindered growth. Instead of promoting social adaptation and acceptance of neurodiversity, many diagnostic procedures and support systems emphasize the challenges and obstacles faced by the individual, drawing attention to perceived “deficits” and anticipating that people will conform to societal standards.
3. Financial, Time, and Emotional Strains
Obtaining an autism diagnosis can be complex and costly. The process often involves multiple appointments with various specialists, such as psychologists, speech therapists, and occupational therapists, stretching over months or sometimes years. This lengthy, demanding process is very taxing to a neurodivergent parent and it potentially disrupts daily routines and causes stress for other family members. The financial burden can also be substantial, with limited or unavailable insurance coverage forcing some parents to pay out of pocket in desperation for support. The financial strain can create disparities in access, particularly impacting lower-income families or those in areas with limited resources.In addition to financial and logistical challenges, the emotional toll of receiving an autism diagnosis can be overwhelming for some. Families may experience feelings of grief, anxiety, or uncertainty about the future. Adjusting to this new understanding requires time and emotional energy, which can affect family dynamics and relationships.
4. Self-Perception and its Impact
An autism diagnosis can easily be misinterpreted as a label of being ‘broken’ or ‘wrong,’ especially in young minds. This misconception can chip away at a child’s self-esteem and confidence, planting seeds of doubt that can grow into bigger challenges. But here’s the good news: introducing kids to the concept of neurodiversity and connecting them with inspiring autistic role models can empower them to embrace their authentic selves. With the right approach, an autism diagnosis can become a launching pad for self-discovery and pride rather than a stumbling block.
An autism diagnosis can be the single most powerful tool for ensuring autistic children receive the support they need. The fear of discrimination or labels can keep us neurodivergent moms from seeking a diagnosis even when we see and long for support that can make all the difference in helping our neurodivergent child thrive.
The decision to pursue an autism diagnosis, or another neurodivergent diagnosis, is complicated, highly personal and emotionally taxing for us neurodivergent moms. It is my hope that you find support for whatever you decide.
