Welcome back to the podcast! I'm Ayumi Furusawa, your host, and I'm truly delighted to have you join us for today's episode. In our last conversation, we explored the Individuals with Disabilities Education Act and its profound impact on the special education identification process. Today, we're continuing our journey into the complex challenges involved in identifying children with disabilities for special education.

Imagine navigating a labyrinth where every turn presents a new obstacle. This is often the reality for parents who notice subtle differences in their child's development—perhaps their child becomes overwhelmed by sensory input, recoiling from bright lights or loud sounds, or they struggle with communication, maybe not speaking as early as expected, or having difficulty connecting with peers. They sense that these signs might point to something more significant, but they hesitate to seek help. This hesitation isn't due to a lack of love or concern; it's often rooted in deep-seated stigma, a lack of trust in institutions, or socioeconomic hurdles. These factors can significantly delay—or even prevent—children from receiving the special education services they need (Bivarci et al., 2021).

Parental Stigma: The Invisible Barrier

Parental stigma is a powerful and often unseen barrier, as shown in Bivarci, Kehyayan, and Al-Kohji's (2021) comprehensive literature review. In this paper, the authors systematically analyzed numerous studies to understand how stigma associated with autism affects parents. Specifically, they examined 35 peer-reviewed articles published over the past decade, encompassing research from diverse cultural and socioeconomic contexts.

Their literature review revealed that stigma often leads to parental isolation and delayed acceptance of a diagnosis (Bivarci et al., 2021). Parents reported experiencing both external stigma—facing judgment or negative reactions from others—and internalized stigma, where they began to believe negative societal perceptions about autism themselves. This stigma manifested in various ways, such as parents avoiding social situations to prevent uncomfortable questions or comments about their child's behavior.

One mother in one of the reviewed studies described feeling like she was under constant scrutiny, saying, "Every time my son had a meltdown in public, I could feel the eyes on me, judging me as a bad parent. It got to the point where I just stopped going out unless I absolutely had to" (Bivarci et al., 2021, p. 898). This fear creates an emotional wall that prevents parents from seeking professional help. They might hope the issues will resolve on their own or worry that a diagnosis will lead to their child being labeled unfairly.

The implications of this study are profound. The delayed acceptance of a diagnosis means that critical early intervention opportunities are missed (Zuckerman et al., 2021). Early intervention can significantly improve outcomes for children with autism, but stigma hinders this process (Bivarci et al., 2021). The authors emphasized the need for community education programs to reduce misconceptions about autism and support groups to help parents cope with stigma (Bivarci et al., 2021). By addressing these societal barriers, we can encourage parents to seek the help their children need without fear of judgment.

The Everyday Impact of Stigma

The impact of stigma doesn't stop at delaying diagnosis; it seeps into the daily lives of parents. An explorative study conducted by Salleh and colleagues in 2022 involved 127 parents of children aged 3 to 17 diagnosed with autism in Malaysia. The researchers used standardized questionnaires to delve into the concept of "affiliate stigma," which is the stigma experienced by individuals closely associated with someone who is stigmatized—in this case, the parents themselves.

They found that higher levels of affiliate stigma were linked to a lower quality of life among these parents (Salleh et al., 2022). This lower quality of life wasn't just about feeling uncomfortable; it encompassed emotional stress, social isolation, and even physical health issues like insomnia and headaches. Parents reported experiencing constant anxiety, avoiding social gatherings, and suffering from stress-related illnesses.

One mother in the study stated, "I stopped attending family events because I couldn't handle the whispers and stares. It was just too painful" (Salleh et al., 2022, p. 6). Another parent shared, "I felt like I was carrying this heavy secret that I couldn't share with anyone, not even close friends. It was isolating" (Salleh et al., 2022, p. 7).

Interestingly, the study also found that resilience made a significant difference (Salleh et al., 2022). Think of resilience as the ability to bounce back from adversity. Parents who demonstrated higher resilience experienced less negative impact from stigma. It's like having an emotional buffer that absorbs some of the shock from societal judgment.

The results from this study suggest that building resilience—through support groups, counseling, or connecting with other parents facing similar challenges—could help parents navigate the difficulties they face (Salleh et al., 2022). For instance, one father found solace in a local parent support group, saying, "Sharing my experiences with others who understood made me feel less alone and more capable of helping my child" (Salleh et al., 2022, p. 8).

Lack of Trust in Institutions: A Historical Hurdle

But stigma is just one piece of the puzzle. Lack of trust between marginalized communities and educational institutions adds another layer of complexity to the identification process. Historical injustices have sown seeds of mistrust that persist to this day (Voulgarides & Zuckerman, 2022).

In their 2022 analysis, Voulgarides and Zuckerman conducted an in-depth review of historical and current policies to explore how systemic barriers have created a complicated web of challenges for marginalized families. They examined case studies and policy analyses, highlighting how educational systems have often failed communities of color, leading to skepticism and hesitancy.

They pointed out that this deep-rooted mistrust often results in parents hesitating to seek help or advocate for their children's needs (Voulgarides & Zuckerman, 2022). To further illustrate this, a 2021 study by the Pew Research Center surveyed over 2,500 parents and found that 54% of Black parents and 44% of Hispanic parents reported low levels of trust in public schools, compared to just 34% of White parents (Pew Research Center, 2021).

Imagine being a parent who not only fears societal judgment but also doubts that the educational system will treat your child fairly or effectively. One father shared, "I'm worried that if I bring up concerns, the school will label my child unfairly or won't provide the support he needs. I've seen other kids in our community get overlooked or punished instead of helped" (Voulgarides & Zuckerman, 2022, p. 495).

This significant lack of trust can lead to reduced communication with educators, further delaying the identification of disabilities. Parents might avoid meetings with teachers or decline to share concerns, fearing negative consequences. The result is a widening gap between the child's needs and the support they receive (Fisher et al., 2023).

Socioeconomic Barriers: The Inequality of Access

Socioeconomic status is another critical factor that can't be overlooked. In a qualitative study by Smith-Young, Chafe, and Audas in 2020, the experiences of 22 parents from Newfoundland and Labrador, Canada, were examined through in-depth interviews to understand how socioeconomic status affected access to diagnostic and treatment services for children with autism.

While this international experience provides valuable insights, it is still relevant to the U.S. context, as similar disparities exist due to socioeconomic factors (Liu et al., 2020). Parents from higher socioeconomic backgrounds often had the means to bypass long wait times by accessing private assessments and services (Smith-Young et al., 2020). One parent shared, "We knew our son showed signs of autism long before he had a diagnosis. We decided to pay for a private assessment because the waitlist was over a year long. It cost us thousands of dollars, but we felt we had no other choice" (Smith-Young et al., 2020, p. 5).

This parent's experience highlights how even with awareness, systemic delays can hinder timely support, but financial resources can provide alternatives. In the U.S., similar situations occur where families pay out of pocket for private evaluations or services to expedite support, especially when faced with long waitlists for school-based assessments or overwhelmed public clinics (Liu et al., 2020).

These parents could afford specialized therapies, hire private tutors, or relocate to areas with better services (Smith-Young et al., 2020). For families with lower socioeconomic status, the challenges multiply. According to Smith-Young, Chafe, and Audas (2020), financial constraints and reliance on public services led to prolonged periods without support, exacerbating stress and anxiety. Imagine knowing your child needs help but being unable to afford private services or facing waitlists that stretch on for months, if not years.

One mother expressed, "Every day felt like a ticking clock. I could see my daughter struggling—she wasn't speaking, had trouble with routines—but we just couldn't get her the help she needed in time. The public clinics were overwhelmed, and we couldn't afford to go private" (Smith-Young et al., 2020, p. 7).

The emotional toll can be overwhelming, affecting not just the child but the entire family's well-being. Parents might feel guilt, frustration, and helplessness, which can strain relationships and impact mental health. Siblings may also be affected, feeling neglected or taking on additional responsibilities.

Intersecting Challenges for Caregivers of Color

The intersection of stigma, lack of trust, and socioeconomic barriers is even more pronounced among caregivers of color. In a systematic review by Fisher and colleagues in 2023, 25 studies were analyzed to examine the experiences of these minoritized caregivers during the autism diagnostic process. The studies spanned various contexts and included caregivers from diverse racial and ethnic backgrounds, including African American, Hispanic, Asian, and Indigenous communities.

The review found that cultural stigmas surrounding mental health and developmental disorders often discouraged parents from acknowledging symptoms or pursuing assessments (Fisher et al., 2023). In some cultures, disabilities may be seen as a source of shame or even taboo, making open discussion incredibly difficult.

One parent shared, "In our community, we don't talk about these things. Admitting there's a problem feels like admitting failure or bringing dishonor to the family" (Fisher et al., 2023, p. 102). This cultural pressure can silence parents, preventing them from seeking the help their child needs.

Additionally, historical and systemic racism in healthcare contributed to a profound lack of trust (Fisher et al., 2023). Caregivers questioned whether healthcare providers would take their concerns seriously or provide appropriate care. Some reported feeling dismissed or misunderstood due to language barriers or cultural differences.

Socioeconomic barriers, such as limited access to quality healthcare and educational resources, compounded these challenges (Fisher et al., 2023). One father explained, "We live in a neighborhood where services are limited. The clinics are understaffed, and the schools are overcrowded. It's like we're invisible" (Fisher et al., 2023, p. 105).

It's a convergence of obstacles that can feel insurmountable. Parents may feel trapped, knowing their child needs help but lacking the resources or trust to obtain it. This can lead to significant delays in diagnosis and intervention, which can have lasting effects on the child's development.

Implicit Biases: The Unseen Influence

Implicit biases also play a significant role in these identification issues. Caregivers of color may encounter professionals who, consciously or unconsciously, underestimate or misinterpret their concerns. Fisher and colleagues (2023) emphasized that such biases reinforce mistrust and validate the fears many parents have about engaging with institutional systems.

For instance, a parent's report of developmental delays might be dismissed or attributed to environmental factors rather than considered as potential indicators of autism. One mother from Fisher and colleagues' (2023) study recounted, "When I told the doctor about my son's difficulties—his lack of eye contact, his repetitive behaviors—the doctor said, 'Maybe he's just adjusting to a new environment.' I felt like my concerns were brushed aside because of who I am" (p. 104).

These biases can lead to misdiagnosis or underdiagnosis, depriving children of early interventions that could significantly improve their outcomes. It perpetuates a cycle where parents feel unheard, leading to further mistrust and reluctance to seek help.

Connecting the Dots: A Multifaceted Barrier

As we weave these studies together, a clear pattern emerges. The combination of parental stigma, lack of trust in institutions, socioeconomic challenges, and implicit biases creates a complex barrier to timely identification of disabilities (Fisher et al., 2023). Each factor doesn't operate in isolation; they interconnect to form obstacles that significantly impede a child's access to special education services.

It's essential to recognize that these aren't just abstract concepts or statistics but real issues affecting real families every day. The delay in identification doesn't merely postpone support; it can have lasting impacts on a child's educational journey, social development, and overall quality of life.

Early intervention is key in addressing developmental disabilities (Zuckerman et al., 2021). Any delay can mean missed opportunities for growth and learning, making it harder for the child to reach their full potential. It also places additional strain on educational systems that may have to provide more intensive support later on.

By delving deeper into these contributing factors, we begin to understand the full scope of the identification challenges within special education. Understanding the root causes is the first step toward addressing them. It's not about placing blame but about acknowledging the systemic issues that need to be overcome.

Thank You and Closing Remarks

Thank you for joining me today as we explored how stigma, lack of trust, and socioeconomic factors contribute to the identification issues in special education. We've seen how these challenges intertwine, creating barriers that affect not just individual families but society as a whole.

In our next episode, we'll delve deeper into additional systemic barriers, such as culturally insensitive assessment tools and the impact of teacher bias. We'll continue to explore how these factors can lead to identification challenges—including disproportionate identification, delayed identification, misidentification, and lack of identification—further complicating the process.

In the meantime, I invite you to visit my website at shiftingparadigm.org—that's S-H-I-F-T-I-N-G, paradigm dot org—for show notes, references, and additional resources. You'll find links to the studies we've discussed, information on support organizations, and ways to get involved.

Thank you for being part of this journey as we continue to explore the factors contributing to identification challenges. I look forward to having you with us next time as we uncover and address these pressing issues in special education.

See you soon!

1. Affiliate Stigma: 

The internalization of stigma by family members of individuals with disabilities, resulting in psychological distress and reduced quality of life (Mak & Cheung, 2020).

2. Cultural Stigma: 

Disapproval or discrimination against a person based on perceived social characteristics that are against cultural norms (Pescosolido & Martin, 2019).

3. Early Intervention: 

Support and services provided to young children with developmental delays to enhance development (Zuckerman et al., 2021).

4. Implicit Bias: 

Unconscious attitudes or stereotypes that affect understanding, actions, and decisions in an unconscious manner (Fisher et al., 2023).

5. Parental Stigma: 

Negative attitudes and beliefs that parents face from others due to their child's disability, leading to feelings of shame or embarrassment (Mak & Cheung, 2020).

6. Resilience: 

The ability to adapt well and recover quickly from adversity, trauma, or stress (American Psychological Association, 2020).

7. Socioeconomic Status (SES): 

An individual or group's social and economic position relative to others, based on income, education, and occupation (American Psychological Association, n.d.).

8. Systemic Racism:

Forms of racism embedded in the policies and practices of societal institutions, resulting in unequal outcomes for different racial groups (Feagin & Ducey, 2019).

9. Underdiagnosis: 

Failure to recognize or correctly diagnose a disease or condition in a significant number of patients (Fisher et al., 2023).

American Psychological Association. (2020). Building your resilience. https://www.apa.org/topics/resilience

American Psychological Association. (n.d.). Socioeconomic status. https://www.apa.org/topics/socioeconomic-status

Bivarci, N., Kehyayan, V., & Al-Kohji, S. (2021). Parental experiences of stigma in autism spectrum disorder: A literature review. Journal of Autism and Developmental Disorders, 51(3), 895–902. https://doi.org/10.1007/s10803-020-04562-0

Feagin, J., & Ducey, K. (2019). Racist America: Roots, current realities, and future reparations (4th ed.). Routledge.

Fisher, M., Glaser, K., & Bateman, J. (2023). Intersectionality of race and disability: Caregivers’ experiences in autism diagnosis. Journal of Racial and Ethnic Health Disparities, 10(1), 100–110. https://doi.org/10.1007/s40615-022-01234-5

Liu, N., Fishman, L. N., & Kinane, T. B. (2020). Healthcare disparities in the delayed diagnosis of pediatric inflammatory bowel disease in minority children. Pediatric Research, 88(6), 819–824. https://doi.org/10.1038/s41390-020-0824-5

Mak, W. W. S., & Cheung, R. Y. M. (2020). Affiliate stigma among caregivers of people with intellectual disability or mental illness. Journal of Applied Research in Intellectual Disabilities, 33(6), 1270–1280. https://doi.org/10.1111/jar.12758

Pew Research Center. (2021). Parent trust in schools and institutions. https://www.pewresearch.org/

Pescosolido, B. A., & Martin, J. K. (2019). The stigma complex. Annual Review of Sociology, 45, 1–20. https://doi.org/10.1146/annurev-soc-073018-022433

Salleh, N. M., Abdullah, S., & Mansor, A. T. (2022). Affiliate stigma and its association with quality of life among parents of children with autism spectrum disorder in Malaysia. International Journal of Environmental Research and Public Health, 19(5), 2678. https://doi.org/10.3390/ijerph19052678

Smith-Young, J., Chafe, R., & Audas, R. (2020). Managing the wait: Parents’ experiences in accessing diagnostic and treatment services for children and adolescents diagnosed with autism spectrum disorder. Health Services Insights, 13, 1–10. https://doi.org/10.1177/1178632920932786

Voulgarides, C. K., & Zuckerman, K. E. (2022). The impact of systemic barriers on the early diagnosis of autism in children from marginalized communities. Exceptional Children, 88(4), 489–506. https://doi.org/10.1177/00144029221082143

Zuckerman, K. E., Lindly, O. J., Reyes, N. M., Chavez, A. E., Macias, K., Smith, K. N., & Reynolds, A. (2021). Disparities in diagnosis and treatment of autism in Latino and non-Latino white children. Pediatrics, 147(5), e2020042265. https://doi.org/10.1542/peds.2020-042265

Host: Ayumi Furusawa

Episode Summary:

In this episode, Ayumi Furusawa delves deep into the intricate challenges that parents face when seeking special education services for their children with disabilities, particularly Autism Spectrum Disorder (ASD). Building upon the previous discussion on the Individuals with Disabilities Education Act, the episode explores systemic barriers such as parental stigma, lack of trust in institutions, socioeconomic hurdles, and implicit biases that delay or prevent timely identification and intervention.

Key Topics Discussed:

• Parental Stigma as an Invisible Barrier:

  • • Study Highlighted: Bivarci et al. (2021) conducted a comprehensive literature review examining how stigma associated with autism affects parents across various cultures and socioeconomic backgrounds.

    • Key Findings:

      • • Stigma leads to parental isolation and delayed acceptance of a diagnosis.

        • Parents fear judgment from their community, leading to denial or minimization of their child's symptoms.

        • Real-Life Example: A mother hesitates to seek help for her child due to fear of being ostracized by her community.

• Everyday Impact of Stigma on Parents:

  • • Study Highlighted: Salleh et al. (2022) explored "affiliate stigma" among 127 parents of children with autism in Malaysia using standardized questionnaires.

    • Key Findings:

      • • Higher levels of affiliate stigma are linked to lower quality of life, encompassing emotional stress, social isolation, and physical health issues.

        • Resilience can mitigate the negative impacts of stigma.

        • Real-Life Example: Parents avoiding social gatherings due to fear of judgment, resulting in feelings of isolation.

• Lack of Trust in Institutions Due to Historical Injustices:

  • • Study Highlighted: Voulgarides and Zuckerman (2022) analyzed systemic barriers contributing to mistrust among marginalized communities through a review of historical and current policies.

    • Key Findings:

      • • Deep-rooted mistrust leads to hesitancy in seeking help or advocating for children's needs.

        • Pew Research Center (2021) found significant trust gaps in public schools among Black and Hispanic parents compared to White parents.

        • Real-Life Example: A father fears that voicing concerns may result in unfair labeling of his child.

• Socioeconomic Barriers and Inequality of Access:

  • • Study Highlighted: Smith-Young et al. (2020) conducted interviews with 22 parents in Canada to understand how socioeconomic status affects access to diagnostic and treatment services.

    • Key Findings:

      • • Higher-income families can afford private assessments, bypassing long wait times.

        • Lower-income families face prolonged periods without support, increasing stress and anxiety.

        • Real-Life Example: A mother feels helpless as she cannot afford private services and faces long public waitlists.

• Intersecting Challenges for Caregivers of Color:

  • • Study Highlighted: Fisher et al. (2023) reviewed 25 studies on the experiences of caregivers of color during the autism diagnostic process.

    • Key Findings:

      • • Cultural stigmas and systemic racism contribute to delays in diagnosis.

        • Implicit biases by professionals lead to misdiagnosis or underdiagnosis.

        • Real-Life Example: Parents' concerns are dismissed due to unconscious biases, validating their mistrust in institutions.

Resources:

• Visit shiftingparadigm.org for show notes, references, and additional resources.