When a child is diagnosed with Autism Spectrum Disorder (ASD), it not only impacts their lives, but also their family and friends. Within the United States, one in 44 children are diagnosed with ASD each year (CDC, 2022). Moreover, “About 1 in 6 (17%) children aged 3–17 years were diagnosed with a developmental disability, as reported by parents, during a study period of 2009-2017.These included autism, attention-deficit/hyperactivity disorder, blindness, and cerebral palsy, among others” (CDC, 2022). Data shows that many families in our country are navigating life with children with developmental diagnoses. So even if you don’t personally have someone in your family with a disability, there’s a good chance you know a family who does.
One study from The Journal of Pediatric Nursing, found that “Caregivers of children with Autism Spectrum Disorder (ASD) report high levels of stress, social isolation, and poor mental health. Social and emotional support may buffer negative effects of stress for caregivers of children with ASD” (Ault, Breitenstein, Tucker, Havercamp, & Ford, 2021).
To be human is to need relationship and support. Many times, families are overwhelmed not only with the diagnosis, and what this could mean for the child’s immediate and long-term future, but also with the grief of their expectations changing. When coming alongside a family, there are many ways to provide caregiver support.
Practical caregiver support for those who have children with autism.
One way to support a family that may be overwhelmed by the many appointments, therapies, and daily life, is to help them with practical tasks. For instance, you can offer to bring a meal by so that the family doesn’t have to plan for that day. Or, if you’re going to the store, asking if there’s something you can pick up for them.
Additionally, there is often a large financial aspect of treatment for children with ASD, such as Applied Behavior Analytic services, Speech and Language Therapy, and Occupational Therapies, depending on the child’s needs. While insurance companies widely cover these services, the family will still need to meet the deductibles.
Inclusion of children with autism.
There are many organizations that offer webinars, classes, and provide materials to help with understanding what autism is, and to support the development of children impacted by autism (Summit, 2022). One proactive way to support the inclusion is by taking time to educate yourself.
But it must be noted that “when you’ve met one person with autism, you’ve met one person with autism,” meaning that autistic individuals are diverse, and so also asking the caregiver about their child and learning about their unique gifts and needs is vital. Then, there are many ways to support the inclusion of the family in daily life.
As related in the study above, many families experience isolation and loneliness after a diagnosis or due to their child’s present difficulty with play, communication, and social skills. A way to support caregivers of children with developmental disabilities is to actively schedule and facilitate play dates.
There are practical things you can do to support a successful play date, such as asking the family the toys their child prefers and also what sensory things (sounds, textures, food) may be a trigger that overwhelms or overstimulates their child.
An important aspect for any child, but especially for one who may have difficulty with transitions or understanding social cues, are proactive transitions such as using a visual timer, giving warnings before moving on, and providing more time if a child is playing with something that can be finished like a puzzle or game (Knutsen, 2022).
In addition, familiarizing yourself with the child’s primary way of communication such as an augmented communication device (AAC) that uses pictures and voice output is helpful and inclusive.
Similar to play dates, including children with disabilities in birthday parties is a great way to support caregivers. Many caregivers report that children with autism are often excluded from group events.
If possible, checking in with the family before the party about sensory needs and or food restrictions can help with the inclusion. Also, providing a room away from the event can be supportive if the child becomes overwhelmed.
Religious services.In addition, there are many ways to support the inclusion of families in religious services. One practical way is to provide sensory supports such as noise-cancelling headphones for services with loud music or providing sensory toys such as fidget spinners.
Similar supports to play dates are recommended for children’s class participation. These include things like having a schedule with pictures, warnings before transitions between activities, and providing choices when possible (Knutsen, 2022).
Relational caregiver support.
Due to the high prevalence of feelings of isolation and mental health struggles for caregivers with children with developmental disabilities (Auerbach, Perry, & Chafouleas, 2019), and the research that shows the benefits of relational supports, there are many ways to support a caregiver through relationship. The following are several ways to be a friend and supportive community member for a caregiver of a child with a disability.
Take time to listen and seek to understand.
Every human wants to be understood. Families navigating disabilities and new diagnoses may simply need a listening ear. Someone willing to sit with them in their journey through incorporating the news and new schedule of treatments and to be there as they process and reflect.
One way to facilitate this is by meeting them where they are. This includes coming by their home if it’s more convenient or being flexible with phone calls can be supportive to a caregiver with an overflowing schedule.
Another suggestion is to ask what the caregiver needs – are they seeking advice, someone to help them problem-solve, or to simply listen.
Ask about their other children.
Additionally, for many families the needs of the child with the developmental disability take precedence in their daily lives due to the extent of support they may need for daily tasks and therapies. Many caregivers report feeling overwhelmed by and fearful of their other children feeling neglected.
As parents they want to make sure to continue to support and be there for all of their children. When talking with a caregiver, make sure to ask about the other family members – their needs, strengths, achievements, and interests.
Ask about their interests.
One of the most important things for any caregiver is to support the whole person. It’s important to remember that we are all more than a diagnosis, a disability, or a stage of life. Building off seeking to understand, seek to support the caregiver in their own personal interests.
This can be done in many ways such as offering to join them on a walk, take a class with them that they enjoy, or cooking meals together. The options are as unique as the individual.
In conclusion, there are many ways to support caregivers of children with autism and development disorders. The prevalence of autism has been on the rise for many years, and it is likely you know of a child or family impacted by the diagnosis.
Taking time to learn about autism, including the child in your activities, providing for practical needs such as gift cards and grocery runs, and seeking to understand and listen to the caregiver are all practical ways to support the family. It takes a village to raise a child, and your support of the caregiver may make all the difference.
Labeled and Loved | Lifelines for Disabilities
Dr Regina Crone | Presenter for Behavior Analysts
Auerbach, E. M., Perry, H. B., & Chafouleas, S. M. (2019, November). STRESS: FAMILY CAREGIVERS OF CHILDREN WITH DISABILITIES. Retrieved from Collaboratory of School and Child Health: https://bureaubulletin.files.wordpress.com/2020/01/collaboratory-on-school-and-child-health-brief-related-to-stress-and-family-caregivers-of-children-with-disabilities-november-2019-.pdf#:~:text=Although%20many%20family%20caregivers%20report%20that%20cari
Ault, S., Breitenstein, S. M., Tucker, S., Havercamp, S. M., & Ford, J. L. (2021). Caregivers of Children with Autism Spectrum Disorder in Rural Areas: A Literature Review of Mental Health and Social Support. Journal of Pediatric Nursing, 229-239.
CDC. (2022, April 2). Data & Statistics on Autism Spectrum Disorder. Retrieved from Centers for Disease Control and Prevention: https://www.cdc.gov/ncbddd/autism/data.html
Knutsen, W. (2022, March 9). Play for All- Supporting Play for Children with Autism. Retrieved from Playper: https://playper.com/blogs/news/play-for-all-supporting-play-for-children-with-autism
Summit, A. P. (2022, April 2). Autism Parenting Summit 2022. Retrieved from Autism Parenting Summit: https://autismparentingsummit.com/
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