A child’s autism diagnosis can affect the whole family, but it can also be positive news. Here’s why.
Autism spectrum disorder (ASD) is a neurodevelopmental condition. It exists on a spectrum and affects language, behavior, and social interactions.
In the United States, an estimated 1 in 59 children have an ASD diagnosis. While some
When an autistic child’s identity is affirmed, they can be better understood by their families, peers, and teachers. An autism diagnosis means that any needed support systems can be put into place to allow the child to flourish and thrive.
Even still, many parents and caregivers express concern about the impact of autism on their child’s development and how that could affect the family.
Neurodivergent children and their families face can certain environmental challenges and societal stigma as they navigate a world designed for neurotypical people.
These challenges do not suddenly appear when a child gets their diagnosis. They exist from the start.
Davida Hartman, PhD, a child psychologist and adjunct professor at the University College Dublin School of Psychology, says an autism diagnosis can be viewed as an affirming experience.
Hartman’s work as the clinical director of the Adult Autism Practice and co-director of Dublin’s Children’s Clinic focuses on identifying the strengths of autism and the benefits that neurodivergent people can offer society.
When a child receives an autism diagnosis, family members can make accommodations for the autistic child and provide them with support services and educational strategies.
“Autism is a valid neurotype, and autistic individuals are valuable members of society,” Hartman says. “Some autistic people need more support and may not live independently, but they are just as equal a human being as anyone else.”
Nicole Buerkens, PhD, a licensed clinical psychologist in the Grand Rapids, Michigan, area, says that parents of autistic children often feel overwhelmed and underprepared — even before a child is diagnosed.
“Parents know that something is developmentally off track with their child, and they’re also dealing with a lot of other challenges on a daily basis,” Buerkens says.
When a child receives an autism diagnosis, some caregivers may not be able to get appropriate support for their child due to their location, availability of services, or financial situation.
In Buerkens’ experience, oftentimes families feel guilty for having a range of emotions regarding their child’s autism diagnosis, including fear, anxiety, and frustration. They might not know how best to support their child, or whom they can trust regarding treatment and support.
Research from 2009 shows that mothers of autistic children, who tend to be a child’s primary caregiver and decision maker, experienced more stress and fatigue than mothers of children without ASD.
In addition, other research from 2009 indicated that mothers of autistic teens were more likely to have higher levels of cortisol, the stress hormone.
While one 2014 study noted that mothers of autistic children were more likely to experience post-traumatic stress disorder (PTSD), the research was limited to white professionals and not indicative of the general population.
In some cases, having an autistic child may place added strain on marriages and partnerships.
Aside from the emotional and financial stressors associated with having a child with a neurodevelopmental disorder, it can be difficult for parents or caregivers to always be on the same page when it comes to making decisions about accommodations and support.
This may include a difference of opinion regarding which type of medical treatment, therapies, schooling, and long-term care is best for their child.
While some researchers have speculated that parents of autistic children have higher rates of divorce, empirical evidence among the broader population is lacking.
Siblings of an autistic child can also be affected. Buerkens says that some siblings may get less attention from their parents. Others may express a concern for the well-being of both their parents and the autistic sibling.
While some siblings may feel frustration or resentment toward their autistic sibling, others may feel protective of them.
The financial impact of medical treatment, psychotherapy, and specialized education for autistic children can take a toll on the mental well-being of parents and caregivers, costing thousands of U.S. dollars per year.
In fact, the lifetime social cost for autistic people is estimated at $3.6 million (in 2019 dollars).
Keep in mind that social cost refers to the cost to the state or country. It doesn’t take into account what families may pay to treat or manage the disorder. These costs depend on various factors, including:
- whether you have insurance and what the insurance plan covers
- how severe symptoms are
- whether your child has any co-occurring conditions
Still, these personal costs can be quite high. Some parents may have the added expense of child care, while others may choose to forego one household income and have one parent stay at home to tend to their autistic child’s well-being.
Autistic people navigate a widespread lack of understanding of their identity as well as stigmatizing ableist rhetoric. They must also learn how to cope with the developmental hurdles they experience because of autism.
Sonny Jane Wise, a peer support counselor in Adelaide, Australia, works with autistic children and adults. Wise, who is autistic, says that many families lean toward the common narrative about autism that their child needs to be “fixed.”
“A lot of the education and literature around autism is written by neurotypical folks and focuses on our deficits, and this impacts how people view and understand autism,” Wise says.
They explain that when an autistic child’s environment is causing sensory overload, it often leads to more distress for both the child and members of their family.
Accommodating an autistic child’s environmental needs is crucial.
Being autistic does not change as children get older: If a child is autistic, they will remain autistic. It is a core part of them.
“All children grow and change in their own individual ways, whether they are neurotypical or neurodivergent,” Hartman says.
Early diagnosis teaches children how to understand and embrace their autism as a vital part of who they are so they can advocate for themselves and learn how to cope with some of their sensory challenges.
“Other children who do not receive such understanding or who are stigmatized and made to feel lesser than because of their autism can experience significant mental health issues in later life,” Hartman adds.
A correct autism diagnosis allows an autistic individual to understand their identity and link them to a community with like-minded people. An early diagnosis marks the beginning of an autistic child’s journey toward self-understanding and self-acceptance.
“A diagnosis helps everyone around the child to understand why they might act a certain way, and then they can change their reactions,” Hartman says. “For example, allowing a child to flap or rock if they want to, as stimming is a natural part of being autistic.”
“What is really important is the information given to parents during the assessment — that autism is presented as a different neurotype and valid way to be in this world,” Hartman says.
Occupational therapy and speech and language therapy can be beneficial techniques for autistic children.
But some of the most beneficial shifts occur when you affirm their identity, make accommodations to their environment, and connect them with members of the autistic community.
Here are a few expert-backed tips to get you started.
Allow your child to be autistic
Advocating for your child and educating others within your child’s community helps affirm their autistic identity.
Encourage your child to celebrate their identity. Help them foster meaningful connections with other autistic kids.
Make adaptations to daily routines
For example, the use of visual supports can serve the focused interests of the autistic child and help prevent sensory overload. It may be helpful to give your child some space when they need it, too, especially when they come home from school.
Consider peer support
If therapeutic inventions are inaccessible or aren’t the right fit for your child, you can also consider peer support.
Peer support is a partnership between two people with similar identities or lived experiences. It can be a helpful alternative to therapy as a relatable, affirming experience.
“Peer support is about encouraging self-determination and empowering individuals with skills, confidence, tools, and community,” Wise says. “Getting the opportunity to show up as my autistic, ADHD self and not having to hide my identities is a benefit, especially when many autistic individuals grow up feeling shame or misunderstood for being autistic.”
Listen and learn
Wise recommends that all advocates seek to understand autism outside of the deficit-based medical model.
You can educate your family by listening to autistic adults, advocates, educators, and activists on social media, and refer to books and online resources.
Be sure to actively listen to your child, too — even if that means finding new, nonspeaking ways to communicate with them.
An autism diagnosis can be an opportunity to focus on the strengths of both the child and the family.
When parents and an autistic child receive appropriate support, the whole family can thrive. The challenge is ensuring that families have access to the right resources.
“There’s really an ongoing need for families to focus beyond the diagnosis and treatment to learn how to function well together as a family,” Buerkens says. “Sometimes a neurodevelopmental diagnosis can actually help to stabilize the family.”
Hartman points out that many of the challenges that autistic people face could be improved if more people actively listened to the autism and disability communities. Learning what their priorities are for support and what society can do to create change and accommodations can help everyone.
“It is absolutely vital that we respect how autistic people perceive, experience, process, and understand the world as a different but entirely valid variation of the diversity of human experience,” Hartman says. “Autistic people can live as fulfilling a life as anyone.”