As the number of children diagnosed with autism spectrum disorder (ASD) increases, so does the number of parents trying to navigate the complexities that accompany an autism diagnosis. Raising an autistic child is challenging for many parents, and many reported higher levels of stress compared to parents of neurotypical children (Estes et al., 2013; Hayes & Watson, 2013; Valicenti-McDermott et al., 2015).
Parents’ stress comes from a variety of sources, including medical and behavioral issues, expenses, availability and quality of interventions, and society’s attitudes towards individuals with disabilities (Carroll, 2013). Subsequently, it is not surprising that parents raising autistic children experience chronic exhaustion and stress.
While there are numerous intervention services for autistic children, supports for parents is lacking. Understanding the type of supports parents want is a critical first step towards better assisting parents, and subsequently, improving parents’ well-being and family outcomes (Hartley & Schultz, 2014). I conducted a group interview with 26 parents about their child’s autism diagnosis and how it impacts their daily life. All parents had at least one autistic child under the age of 10, with many having other neurotypical children.
Level of Support After the Initial Diagnosis
Parents reported feeling relieved after receiving an autism diagnosis, since it confirmed their instinct that something was “different” about their child. Despite feeling relieved, all parents felt isolated and lost since they had questions and fears and did not know where or who to turn to. Additionally, after the diagnosis parents reported experiencing a great deal of denial and sadness. Half the parents had support from family or friends and most of the parents were frustrated from the lack of support by their physicians.
The Hidden Stress Many Don’t Discuss
Caregiver and family stress typically begins before a formal autism diagnosis is given. Parents reported experiencing reduced support and decreased interactions with family and friends when their child began exhibiting autistic behaviors. Lack of autism awareness was the primary reason parents gave for the negative impact on relationships. Half the parents reported friends stopped requesting playdates, and all the parents reported feeling alone, as though nobody understood their child’s unique behaviors.
The Primary Source of Stress
Autistic children are usually referred to numerous intervention services including school support, occupational therapy, applied behavior analysis, physical therapy, and speech therapy. All parents reported a main source of their stress were barriers to autism services, such as battles with insurance companies to cover autism services, finding service providers within a reasonable distance of their home that did not have months long waitlists, and scheduling multiple therapies into their busy week.
Feeling Alone
All the parents talked at length how they felt very alone. Since the possibility of a meltdown occurring when out in public – and being judged by others – is always present, many parents described shopping exclusively at one store, shopping during hours with fewer shoppers, or having their spouse complete errands.
Guilty Feelings Leading to Stress
Those parents with multiple children discussed at length the unrelenting feeling of guilt about the unequitable division of attention and care given to their autistic children versus the other siblings. This led to a robust discussion surrounding family vacations and how they are more exhaustive than relaxing for parents. Due to the amount of time it takes to prepare their autistic child for a vacation paired with no respite care while on vacation, most parents reported planning few – if any – family vacations. The parents reported feeling guilty and expressed sadness seeing their neurotypical children missing out on new adventures, new places and experiencing a much-needed stress relief.
One Dream
For parents, the weekly therapies feel like a road of unending appointments, consuming time that could be spent on their other children. As the parents wished there were a better way to coordinate the numerous therapies, one parent dreamily asked, “Wouldn’t it be nice if the therapies were under one roof?” And just like that, a dream took hold; could there be one agency that offered a suite of therapies? Additionally, could one of the therapies be mental health counseling for parents?
What Would Help Parents
The biggest ask by parents: Be patient with us, especially when we are grumpy. We are doing the best we can under the circumstances. Realize that every day comes with challenges and few reinforcing encounters; we don’t feel valued. One parent said, “I feel guilty for saying this, but just once I wish the therapists were as happy to see me as they are seeing my autistic child.”
Beneficial Supports
All parents reported parent support groups provided a supportive space for them to cope with their stress by reflecting on their stressors and connecting with other parents. One parent specifically mentioned being surrounded by parents who “get it and are non-judgmental” was helpful. Parents said they preferred support groups led by parents rather than professionals. One parent said he would love to see more support groups led by autistic adults, since most are led by non-autistic individuals.
One parent noted that agencies often set up parent trainings, support groups and workshops without offering supportive services like childcare, “and then they wonder why parents don’t show.” Another parent mentioned those families who have the most support usually attend the agency-sponsored programs, whereas the families who would really benefit are not able to attend due to lack of childcare or schedule conflicts. When planning support groups or workshops, parents mentioned scheduling them during the school day or Friday afternoons, rather than evenings.
One support all parents concurred with: A mentoring class that equipped them to be better advocates for their child during IEP meetings. All the parents said they felt the IEP process was stressful and fraught with frustration. One parent said, “I would gladly pay for a professional to guide me through the IEP process, making sure my concerns are heard and my child’s needs are met.” All the parents wholeheartedly agreed they would pay for that service.
Information is Power
All parents discussed the importance of being informed on autism, making them more confident in knowing what was best for their child. From the moment that an autism diagnosis is given, the parents explained, “Lack of access to reliable information is a significant barrier to adjustment for families.” Another parent said, “It is how parents cope, more information helps parents cope emotionally.” The parents reported feeling frustrated and overwhelmed differentiating the legitimate interventions from the faddish, unproven approaches. One parent said, “Information is power. It is how I can help my child be more successful in life.”
Respite is the Most Important Support
If you could list one support as the most important, what would it be? When I asked this question, all parents responded in unison…. adult time. One parent summarized it well, “For all the stressed-out parents with kids on the spectrum, I can’t emphasize enough how luxurious it is to have even a small amount of time away.” One parent said if agencies scheduled a two-hour “parent night out” or “parent afternoon out,” it would be popular. All the parents agreed, “Most people assume parents of autistic children have family willing to watch their kids, which is not the case. For some, therapy sessions are their only personal time.”
Conclusion
The interview highlights the importance of support for parents. It became apparent that every day comes with challenges and unknowns which can be emotionally draining and stressful. Not all parents receive support from family and friends, which leads to the importance of formal supports offered by agencies. Some may argue that services for autistic children indirectly help parents. True, however supporting parental needs is usually not the job of the child’s therapist. Offering services solely for parents may be a dream. But what if there was one agency that housed multiple therapies? What if it housed mental health counselors for parents? What about adding social workers to help parents navigate services and information? What if there was an education advocate who walked parents through the IEP process? And parent support groups and parent-night outs were offered monthly? Slowly the dream of supports can become a reality.
Heidi Hillman PhD, BCBA-D, LMHC, is Associate Professor at Eastern Washington University. For more information, Dr. Hillman can be reached at hhillman@ewu.edu.
References
Carroll, D. W. (2013). Families of children with developmental disabilities: Understanding stress and opportunities for growth. Washington, DC: American Psychological Association.
Estes, A., Olson, E., Sullivan, K., Greenson, J., Winter, J., Dawson, G., & Munson, J. (2013). Parenting-related stress and psychological distress in mothers of toddlers with autism spectrum disorders. Brain & Development, 35, 133-138.
Hartley, S. L., & Schultz, H. M. (2014). Support Needs of Fathers and Mothers of
Children and Adolescents with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 45(6), 1636-1648.
Hayes, S. A., & Watson, S. J. (2013). The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders, 43, 629-642.
Valicenti-McDermott, M., Lawson, K., Hottinger, K., Seijo, R., Schechtman, M., Shulman, L., & Shinnar, S. (2015). Parental stress in families of children with autism and other developmental disabilities. Journal of Child Neurology, 1-8.
