"Autism doesn't come with an instruction guide.
It comes with a family who will never give up."
KERRY MAGRO
With Neurodevelopmental Conditions (NDC) and autism spectrum disorder (ASD) diagnoses on the rise, more parents are experiencing the challenges that come with raising a child who struggles with communication, social interaction, or atypical behavior (1).
It’s natural for parents to feel adrift when they first learn their child is affected by ASD. Nonetheless, there is room for optimism; science is progressing rapidly and we are witnessing greater outcomes as a result of a high-quality early intervention.
We now know that autism is not caused by parenting, but rather by a complex interplay of genetic, epigenetic, and environmental factors. We also know that interventions in the first years of a child’s life can seriously reduce the likelihood of their diagnosis being confirmed in the future (2,3). The question remains whether autism does need a ‘’cure’’, or should be seen as a difference, not a disadvantage, as asserted by The National Autistic Society (4).
Caring for a child with a NDD presents significant challenges for parents, requiring extra effort to adapt to daily activities that can sometimes be daunting. The demanding nature of caring for and raising a child with autism may lead parents to experience physical and mental exhaustion. Mothers of these children often endure greater mental, physical, and psychosocial fatigue, along with lower health-related quality of life compared to mothers of typically developing children (5,6,12). Furthermore, chronic stress can contribute to the development of anxiety, depression, and stress-related health issues in both parents, particularly affecting mothers (7,8). Physical manifestations of stress often include a weakened immune system, fatigue, muscular tension, eating and sleep disturbances, as well as feelings of detachment from reality, forgetfulness, and challenges with self-care. When compounded by inadequate sleep, lack of emotional support, and financial strain, parental stress can lead to marital discord, less effective parenting, and disengagement from treatment protocols. This reality may not align with the life we envisioned, but it's one many parents of children with neurodevelopmental disorders navigate.
Research suggests that understanding one's own emotions and feelings plays a pivotal role in enhancing parental outcomes. Upon learning of an autism diagnosis in their child, many parents undergo distinct emotional stages, such as denial, anger, bargaining, depression, and acceptance. These stages closely resemble the model outlined by Elisabeth Kübler–Ross (9).
In the denial phase, you may feel shocked when learning about autism diagnosis. Parents may grapple with disbelief or seek multiple opinions to confirm or refute the diagnosis.
While anger is considered a natural reaction to frustration and stress, it can evolve into intense rage directed towards oneself, one's children, spouse, society, or even the universe.
During the bargaining stage, a sense of hope and faith emerges, often leading to aspirations for a different diagnosis or the belief that a specific treatment or therapy will provide a definitive "solution" or cure for the child.
Following the initial shock, deep sadness and depression may ensue. As parents, we harbor hopes and dreams for our children, envisioning their futures consciously or subconsciously. Some parents mourn these dreams, while others find relief in understanding their child's atypical behavior, which can alleviate emotional distress and open avenues for support (10). Consequently, some parents may feel a newfound sense of confidence following the diagnosis.
Speaking about emotional challenges, I recall Dave McKean's film 'Luna', where characters grapple with profound sadness, navigating through a landscape of grief and emotional turmoil. Their journey mirrors the emotional challenges faced by many parents during the diagnosis of their child with autism. Like the characters in 'Luna', these parents confront a whirlwind of emotions, from sadness and confusion to a profound sense of being lost in uncertainty lying ahead. The metaphor evokes a sense of fragility, load, and protectiveness, which can parallel the emotional journey of parents caring for their newly diagnosed child. Much like the paperman carrying the bird, parents of children with autism may feel fragile and overwhelmed by the challenges they face, yet they are deeply committed to caring for their child, just as the paperman is committed to protecting the bird.
However, amidst their struggles, both the characters in the film and the parents embark on a journey of acceptance, adaptation, and finding hope in unexpected places. Just as the characters in 'Luna' learn to embrace their emotions and find strength in vulnerability, parents of affected children often discover resilience and growth as they advocate for and support their child through the complexities of the condition. Through this comparison, we gain insight into the shared human experience of coping with adversity and finding light in the darkness.
Therefore, it is natural for the parents to experience emotional conflict and disharmony due to completely different and intense emotional reactions. However, parental behaviors and emotions play a central role in creating a positive emotional connection with the child. A 2019 study confirms that children with autism are attuned to their mothers’ feelings (11). Indeed, your emotional state significantly impacts your child, whether you realize it or not. Therefore, taking care of your well-being is in both your and your child’s best interest. But where do we start? Given the Kübler-Ross model as a reference, it is valuable to explore how the stages of parental emotional response could be adapted to address stress stemming from a child's diagnosis and cultivate resilience in challenging circumstances.
While these stages may keep occasionally returning in various forms and degrees, acceptance is the point where you start finding small moments of joy and making realistic plans for your child’s future. Moreover, parents report feeling more connected to their child as they incorporate the diagnosis into their understanding of the child.
When navigating the journey of parenting a child with NDD, it is essential for parents to employ basic coping strategies to manage stress and foster resilience. These key strategies include:
Self-Care
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Prioritize activities that promote relaxation and reduce stress, such as meditation, yoga, or deep breathing exercises
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Make time for hobbies and activities that bring joy and fulfillment
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Ensure adequate rest and nutrition to maintain physical and emotional well-being
Seek Support
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Connect with other parents of children on the autism spectrum through support groups or online forums to share experiences and advice
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Build a network of supportive friends, family members, and/or professionals who can offer understanding and encouragement
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Consider seeking guidance from therapists or counselors who specialize in autism-related issues
Educate Yourself
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Learn about autism spectrum disorde to better understand your child's unique strengths, challenges, and needs
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Stay informed about available resources, therapies, and interventions that may benefit your child
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Advocate for your child's rights and access to appropriate services and accommodations
Practice Patience and Flexibility
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Accept that progress may take time and setbacks are a natural part of the journey
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Be open to trying different approaches and adapting strategies based on your child's evolving needs
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Celebrate small victories and milestones, no matter how minor they may seem
Maintain Communication
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Keep lines of communication open with your child's healthcare providers, educators, and therapists
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Share concerns, observations, and goals with your child's support team to ensure coordinated care and consistency
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Foster open and honest communication within the family to address any challenges or changes together
Take Breaks
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Recognize when you need a break and don't hesitate to ask for help from trusted individuals
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Schedule regular respite care or childcare to allow yourself time for rest and rejuvenation
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Engage in activities outside of caregiving responsibilities to recharge and maintain a sense of identity beyond being a parent
Parents coping with an ASD diagnosis often share common needs - emotional, informational, and relational. While emotional support is crucial for managing distress, receiving relevant and timely information can help parents develop a deeper understanding of their child’s condition and make informed decisions for further action. Additionally, an empathic and patient-centered relationship with a primary physician can make a significant difference for the parents, as empathic communication enables effective perspective-taking and improves health outcomes for both children and their parents.
Raising a child with functional, communication, and behavioral challenges can indeed be stressful. However, it doesn’t have to condemn you to a life defined by stress. Do your best to recognize when the pressure of your life is creating chronic stress, and take steps to alleviate the strain. By prioritizing your well-being, not only do you enhance your own health and happiness, but you also contribute to the overall well-being of your child and the entire family. Remember, seeking support from others who understand your journey can provide invaluable strength and solidarity along the way.
Common Challenges and Hurdles: Navigating Autism Care and Society's Perceptions.
One of the most challenging aspects parents face is the lack of understanding and empathy from healthcare professionals. Many doctors are inadequately trained in neurodevelopmental disorders (NDDs) and autism spectrum disorder (ASD), leading to misdiagnoses, dismissive attitudes, and inappropriate treatment recommendations. Parents may find themselves battling to have their concerns taken seriously, only to be met with scepticism or disbelief.
Another distressing aspect parents face is the financial exploitation they may encounter from some clinics and healthcare professionals. Unfortunately, in their vulnerability and desperation to help their child, parents may fall victim to unscrupulous practitioners who take advantage of their concerns and offer costly, unproven or ineffective treatments or therapies promising miraculous results.
These clinics or physicians may capitalize on parents' hope and desperation by offering expensive lab tests, interventions, or supplements with little to no scientific evidence supporting their efficacy. Such treatments can drain families' finances and may even be harmful to the child's well-being. Additionally, some clinics may engage in unethical billing practices, overcharging for services, or recommending unnecessary tests or procedures.
Moreover, the lack of regulation and oversight in the autism treatment industry can leave families vulnerable to exploitation. With limited guidance on which treatments are evidence-based and effective, parents may struggle to discern between legitimate interventions and those driven by profit motives. Parents may also face other forms of exploitation, such as emotional manipulation or coercion. Some clinics or practitioners may prey on parents' guilt or feelings of inadequacy, promising to "cure" or "fix" their child's autism through costly interventions or therapies.
In addition to facing barriers within the healthcare system, parents also encounter ignorance and stigma in society.
Despite increased awareness of autism in recent years, misconceptions and stereotypes still abound. Well-meaning but uninformed individuals may offer unsolicited advice or make hurtful comments, adding to the parents' burden of guilt and isolation.
Furthermore, accessing appropriate support services for their child can be an uphill battle for parents, while in some areas such services do not exist. Limited resources, long waitlists, constant delays, and bureaucratic red tape often hinder parents' efforts to access the help their child needs. This lack of support can exacerbate feelings of frustration, helplessness, and isolation.
Ultimately, the collective impact of ignorance, misunderstanding, a lack of compassion, as well as the financial burden and emotional toll of navigating these challenges can be overwhelming for parents by taking a toll on their mental and emotional well-being. They may feel stressed, powerless, and isolated, unsure of where to turn for trustworthy information and support.
Parents of children with neurodevelopmental delays know firsthand the challenges and hurdles they face in navigating the healthcare system and society's perceptions. It's crucial that healthcare professionals, clinics, and society as a whole undergo greater education and awareness training on autism. Empathy, compassion, and a willingness to listen are not just ideals, but lifelines for affected famlies. Fostering a more inclusive and supportive environment would empower parents and ensure that all children, regardless of neurodiversity, receive the care and acceptance they deserve. A crucial step would be establishing clear and precise guidelines for treatment practices. These guidelines must not only keep pace with the latest scientific breakthroughs but also integrate the most recent research discoveries on neurodevelopmental disorders. Staying informed about these advancements and integrating them into clinical practice is essential to ensure that families receive therapy that's firmly rooted in evidence, effective, and ethically sound. Simultaneously, as parents, we can adopt strategies to recognize instances of financial manipulation and navigate social attitudes or judgments with resilience, resisting stigma and blame through personal growth and openness.
By advocating for change, we are trying to create a world where our children can thrive, supported by a healthcare system and society that truly understands and embraces their unique gifts and challenges.
References:
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Padilla-Petry, P., & Saladrigas-Tuà, M. Autism in Spain: parents between the medical model and social misunderstanding. (2020) Disability & Society, 37(3), 454–475. https://doi.org/10.1080/09687599.2020.1828043
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Bivarchi, F., Kehyayan, V., & Al-Kohji, S. Barriers to the early detection and intervention of children with autism spectrum disorders: A literature review. (2021) Journal of Nursing Education and Practice, 11(11), 72. https://doi.org/10.5430/jnep.v11n11p72
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Lester, J., O’Reilly, M. Stigma, Disability, and Autism. In: The Social, Cultural, and Political Discourses of Autism. (2021) Education, Equity, Economy, vol 9. Springer, Dordrecht. https://doi.org/10.1007/978-94-024-2134-7_7
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Thompson-Hodgetts, S., Labonte, C., Mazumder, R., & Phelan, S. Helpful or harmful? A scoping review of perceptions and outcomes of autism diagnostic disclosure to others. (2020) Research in Autism Spectrum Disorders, 77, 101598. https://doi.org/10.1016/j.rasd.2020.101598
Navigating the healthcare system and societal perceptions can be a daunting and disheartening experience. Too often, parents and caregivers encounter ignorance, misunderstanding, and a lack of compassion from doctors, clinics, and the broader community.
A study reports that children with ASD are often rejected by peers, family members, relatives, and the community. It also adds that receiving various pieces of information about ASD interventions from healthcare providers made seeking out ASD services more confusing and complicated.
"Stigma and shame are still very much present," says Kate Lynch, a parent of a neurodivergent child, "and I work every day to change the views of the vast majority of the public who are ignorant about my son’s challenges, my own challenges, and, by extension, the challenges of all neurodivergent people and those who love them."
Research Treatment Options:
Before pursuing any treatment or therapy for their child, thoroughly research the available options. Seek out evidence-based interventions and consult reliable sources such as medical professionals, reputable organizations, and peer-reviewed research studies.
Get Second Opinion:
It's important for parents to seek second opinions from qualified healthcare professionals, especially if they have doubts or concerns about a diagnosis or treatment plan. Consulting multiple experts can help you make more informed decisions and avoid potentially harmful or unnecessary treatments.
Ask Questions:
Do not hesitate to ask questions and seek clarification from healthcare providers. Inquire about the rationale behind recommended treatments, potential risks and benefits, and alternative options. Clear communication with healthcare professionals can help you feel more confident in their decisions.
Be Skeptical of "Miracle Cures":
Be cautious of treatments or therapies that promise miraculous results or claim to "cure" autism. These claims are often unsubstantiated and may be exploitative. Parents should critically evaluate the evidence supporting any proposed interventions and consult with trusted medical professionals.
Seek Support Groups:
Joining support groups or online communities for parents of children with autism can provide valuable peer support and guidance. Connecting with other parents who have similar experiences can help validate concerns, share information, and offer practical advice for navigating challenges.
Educate Others:
You can help combat ignorance and stigma surrounding autism by educating their family, friends, and community members. Sharing accurate information about autism, challenging misconceptions, and advocating for acceptance and inclusion can help create a more supportive environment for your child.
Know Your Rights:
Familiarize yourselves with your legal rights and entitlements under disability rights laws and regulations, if it is applicable in the country of your residence. Understanding the rights to access services, accommodations, and educational supports can empower parents to advocate effectively for their child's needs.
Practice Self-Care: Caring for a child with autism can be emotionally and physically demanding. Prioritize self-care and seek out opportunities for rest, relaxation, and support. Taking care of their own well-being enables parents to better cope with stressors and advocate more effectively for their child.