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Support parents who care for children with autism

Applied Behavior Analysis (ABA) is considered by many to be the gold standard for treating children with autism spectrum disorder (ASD). April is National Autism Awareness Month, making it a good time to review the importance of this evidence-based approach, and specifically, the role of parents and caregivers.

Parents and caregivers play a critical role in the ABA process, as they are central to reinforcing what is taught in session by the ABA therapist. Such a role is challenging for parents and caregivers and understandably can cause parental stress. In fact, stress is the main reason for lack of parental involvement in a child’s early intervention program, such as ABA, according to one study.

Supporting parents and caregivers, therefore, is important to a child’s successful ABA treatment.

Parents reinforce ABA therapy

Early diagnosis and intervention are necessary to achieve the best outcomes in treating children with autism. ASD treatment focuses on improving children’s abilities in communication, self-help skills and social interactions. ABA uses specific teaching methods, such as positive reinforcement, with a focus on how learning is achieved. When the child is not actively in therapy, parents and caregivers reinforce what has been taught during these sessions.

Parents and caregivers play a critical role in the ABA process, as they are central to reinforcing what is taught in session by the ABA therapist.

Indeed, ABA therapy isn’t nearly as effective without parental involvement. When parents do not participate, a disconnect develops between what is taught in therapy and what occurs in the home. This disconnect prevents children from applying what they have learned across different settings and environments. Learning in ABA also requires repetition and practice, and practice opportunities are lost if the child is not receiving this reinforcement from parents and caregivers in the home. Children who receive consistent parental teaching in conjunction with an early intervention program demonstrate overall improved cognitive and developmental skills.

The data demonstrate that ABA works. In one study of children with ASD who received intensive treatment for 40 hours per week over a period of two years, 47 percent of those who received this intensive ABA therapy were functioning at the same level as their peers who did not have ASD.

To stay involved, parents need support

Parents rely on both formal and informal supports to help their child with autism, according to a study on family support needs. Informal supports include assistance with everyday tasks and emotional support from family and friends. More formal support includes help from myriad professionals, ranging from speech pathologists to behavioral health therapists to special education teachers. Both sets of support are more effective when provided in the context of family-centered care, which calls for establishing relationships based on mutual respect and open communication.

The study also reports that mothers and fathers feel differently about whether their support needs are being met. Mothers and fathers experience parental pressure disproportionately as “mothers reported higher levels of parenting stress and more depressive symptoms than did fathers,” even though most support services are geared towards mothers, the study continues.

In brief, mothers’ unmet needs focus on child therapies and treatments, while fathers feel their needs are unmet in the areas of parent self-care and relaxation. It’s important to note these differences as we determine what supports parents need to help them be more effective in their children’s education and therapy.

Supporting parents of children with ASD

Regardless of different support needs voiced by mothers and fathers, support is indeed necessary. Not only is it critical to parents, but it’s also critical to the child’s successful development. As noted, stress is the main reason for lack of parental involvement. How, then, can we address that stress?

Research indicates that access to a support group as well as follow-up services post-diagnosis are of most benefit to parents. A parent support group helps parents to adapt better to the diagnosis, reduce stress and navigate services. While parents of children with ASD seek support from friends, they prefer receiving support from families with ASD experience: 68 percent sought support from friends while 93 percent sought information from families with a similar diagnosis.

Research indicates that access to a support group as well as follow-up services post-diagnosis are of most benefit to parents.

Closing gaps in care is always critical to successful treatment, and support for parents of children with autism is no exception. Beacon’s experience with all behavioral health conditions has taught us that important lesson. Specific to ASD, Beacon’s coordinated care model for ABA therapy offers family support from a dedicated ASD clinical team, including case management and help with referrals to an ABA or behavioral health specialty network. Through a needs assessment, we identify and provide ongoing family coaching, including information on treatment options, family coping strategies and advocacy. We also connect families to legal/financial resources, support groups and online educational information.

The approach is family-centered, which as noted, is most effective. It helps to determine the needs unique to each family member, such as information on treatments for the mother or relaxation outlets for the father. As we seek to help families of children with ASD, it’s imperative that we include the whole family because children with ASD can’t thrive without their families’ support

10 Comments. Leave new

Lori Jeanne Peloquin
April 14, 2021 4:25 pm

Even more family centered is the DIR/Floortime model which is also supported by research. It focuses on the emotional developmental level if the child, their individual differences and relationships with caregivers to support their emotional growth.

Debra Fruchtman
April 15, 2021 12:00 am

I agree DIR/Floortime should also be considered. It’s a wonderful intervention. Many of its approaches are very useful in working with all children too.


Family involvement is an incredibly important component of any ABA-based treatment plan. In our practice, we encourage parent participation and feedback as much as possible. We always consider our role to be that of guidance and support for families as much as for the learner themselves. I’m very glad to hear that these supports are being made available to families in need.


I am a licensed clinical social worker, and I have a nonverbal autistic grandson and his father living with me. It requires a lot of time to parent and supervise this child. No one can do it alone, and even though ABA therapy sounds great, it is not available very easily, especially when the child has Medicaid health insurance. We have had some experience with it, but it is never continued on a regular basis due to the agencies, but it’s also very stressful to have someone in your house doing it, or to be constantly taking a child to appointments. I just want to say, that you can’t do enough to support families like this, and really most people don’t understand the kind of ongoing stress it involves. Thank you for this article.


All parents and caregivers should try hard to remember self-care in order to continue to be able to support the children and family members in their care and life 🙂

Lenore Collupy
April 14, 2021 6:08 pm

As a family member of a now adult son with ASD, and as a Family Advocate being “family centered” is vital in the care and treatment of our children. I have always said that this truly is a “pervasive” developmental disorder –ASD ripples into and effects many lives…especially the families. As the family we need to continue to advocate for consistent supports and treatment for our children but also the need for respite care so the family can recharge. This article brings forward the familial stressors–let’s find ways to give and offer relief!

Lenore Collupy
April 14, 2021 6:23 pm

Nice article on the importance of being “family centered” for all touched in the circle of this “pervasive” developmental disorder! We must stay committed in not only the treatment of the children with ASD but in offering stress relief for the families…to continue to advocate for needed respite services so that the family can recharge. Families need to stay fortified and resilient on this journey!


I have to echo the Mom that wrote that the intense services you mention (40 hrs./wk.!) are not available in many states (Id.). I also think a missing piece is the stress on the siblings who have to cope with the ASD bro. or sister. They have to sacrifice their needed time for their special needs sibling. Also, the stress on the parents as a couple. I suspect divorce rates are high. I especially like the idea of a support group for these families.


AANE is a great support for families!


I think most of these families experiencing such stress should consider the DIRfloortime model of therapy. It is incredibly effective, it treats your child as a whole person instead of trying to mask their “disorder” and is not nearly as time intensive. I’ve had to take my own kids at maximum 2/week for an hour each time. I cannot fathom the stress of taking a young child to a therapy setting 40hrs a week. That’s ridiculous. And I don’t think many people realize that the form of therapy ABA is a stressor in and of itself. Of course your child is going to be stressed out doing this therapy.


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