What should educators consider when working with students with autism?
Page 5: Family Engagement
Family engagement is one of the most—if not the most—important factors in ensuring a child’s success at home and in school. Therefore, IFSP and IEP teams should center the child and family in all of their decisions. Family engagement is more than a one-sided conversation where educators inform parents about their child’s progress or challenges. Rather, it happens when (1) educators actively encourage families to participate in meaningful ways and (2) families support their children in and out of school. Educators can build strong collaborative partnerships with families of autistic learners by seeking to understand and support them and by valuing their contributions.
Seeking to Understand Families
A first step in meaningful family engagement is working to understand the complex realities of raising a child with autism. Keep in mind that families vary greatly in structure (e.g., single-parent households, extended family living together, foster families), background and experiences, income level, primary language, and more. Understanding this is crucial, as each family’s unique circumstances will shape their priorities, needs, and the types of supports that will be most effective.
Additionally, educators should recognize that every family encounters challenges, but some families of children with disabilities experience these to a greater extent or in more intense ways. These challenges can include:
Did You Know?
Geographic location can magnify family challenges by limiting access to specialized services, qualified professionals, and support networks, particularly in rural or underserved areas.
- Limited personal time: Due to the time required to meet their child’s needs (e.g., caregiving tasks, participating in interventions, attending appointments), parents often experience decreased time and availability for work, leisure, and self-care activities. In addition, this can impact families’ school involvement (e.g., responding to communications, attending meetings).
- Financial burdens: Services and supports (e.g., medical services, therapies) can be expensive and might not be fully covered by insurance or other programs. Furthermore, some families might lose income if a parent reduces their work hours or leaves employment to care for their child.
- Heightened fatigue: Families raising children with autism frequently provide intensive care and supervision, which can contribute to fatigue. Furthermore, sleep difficulties are common among children with autism, potentially disrupting caregivers’ rest and causing further exhaustion.
- New roles and responsibilities: Family members of autistic children often assume roles and responsibilities that extend beyond those typically associated with parenting. For example, parents might find themselves taking on roles such as case manager (e.g., overseeing and coordinating a variety of services), advocate (e.g., speaking out in the best interest of their child), or medical expert (e.g., learning about their child’s medical needs, navigating insurance coverage). Such roles can take a significant cognitive and emotional toll and can contribute to increased stress levels.
- Feelings of isolation: The demands on their time, resources, and energy can make it difficult for parents and families to maintain friendships and social engagement. This challenge can be compounded when others (e.g., friends, family, community members) fail to understand or accept their child’s autism, leading families to feel alone and unsupported.
When educators are aware of the stressors that some families face, they can approach them with greater understanding and empathy. This ultimately leads to stronger school-family partnerships.
For Your Information
Because there are no physical characteristics that readily identify a child with autism as having a disability, autism is often referred to as an invisible disability. Consequently, others might perceive behaviors characteristic of autism as intentional misbehavior or a result of poor parenting. Such judgments stemming from a lack of awareness can contribute to undue stress and feelings of guilt for families.
Although families of children with autism often navigate challenging circumstances, they also frequently experience and express feelings of strength, hope, joy, love, and pride. In fact, many families find that their child has positively impacted their lives by:
- Increasing their capacity for unconditional love
- Giving them a greater sense of pride in their child’s accomplishments
- Making them more patient, understanding, and tolerant
- Teaching them to appreciate the little things in life
- Leading them to learn more about disabilities and advocacy
Research Shows
Although a child’s autism influences the whole family, individual members often navigate their experiences in significantly different ways.
- Mothers of autistic children generally experience higher levels of stress than fathers, often feeling less capable and more restricted, conflicted, or depressed in their caregiving role.
(Di Renzo et al., 2021) - Fathers of autistic children often feel overlooked or ignored by professionals even though they strongly desire to be more involved throughout the diagnostic process and ongoing care for their child.
(Brown et al., 2021) - Siblings often play a crucial supportive role for their autistic brother or sister by protecting them from bullying, helping with care, offering friendship, and connecting them to other kids.
(Samsell et al., 2022)
Supporting Families
When educators better understand the complexities of raising a child with autism, they can more thoughtfully plan for and provide meaningful support to families. Collaborating with families can not only help promote the child or student’s progress but reduce the family’s stress. Below, explore some simple ways that educators can offer intentional support for families.
When communication from the school primarily focuses on a child’s struggles or only occurs on difficult days, it can be disheartening for parents. Sharing positive anecdotes and showing genuine interest in the child beyond their educational challenges can go a long way in supporting families.
School personnel should take steps to ensure that families can actively participate in their child’s IFSP or IEP meetings. This includes scheduling meetings at a time when parents can attend, ensuring the availability of an interpreter when needed, offering virtual meetings or transportation assistance, and structuring opportunities for parents to share information before, during, and after the meeting.
Educators, particularly special education teachers and related service providers, are often well positioned to connect families with local service providers, support groups, and other community organizations that assist families of autistic children. Many families find immense value in connecting with others who are navigating similar experiences, and these associations often foster lifelong friendships and mutual support.
Valuing Families’ Contributions
Educators should view family members as more than just passive participants on the multidisciplinary team. Families are experts on their children and have unique priorities and visions for their future. As such, they can contribute to educational decisions by:
- Offering valuable insight about their child’s skills, abilities, interests, and areas of need
- Expressing their hopes and dreams for their child
- Evaluating the appropriateness of potential goals and intervention strategies given the family’s background, values, and priorities
- Sharing effective strategies and supports used at home that could also be implemented in the school setting
- Communicating unique family circumstances (e.g., caregiver work schedules, family values and beliefs, living arrangements) that might impact the feasibility of certain supports, especially when early intervention services will occur in the home environment
Families are more likely to feel comfortable opening up to school personnel when they feel welcomed and accepted. Educators can build trusting relationships by communicating respect for families’ perspectives and decisions, even when they differ from the educator’s opinion. At all times, educators should remember to focus on what they and the parents have in common—a desire to see the child succeed.
In this interview, Jamie Pearson discusses the importance of building collaborative relationships with families as well as strategies that educators can use to strengthen those relationships.
Jamie N. Pearson, PhD
Associate Professor
Department of Teacher Education and Learning Sciences
North Carolina State University
(time: 3:00)
Transcript: Jamie N. Pearson, PhD
I think it’s very important to involve families of autistic students in their education because families are often their children’s first and most critical advocate. Families spend a lot of time with their children. They’re often able to provide really critical insights about their child’s strengths, their challenges, their interests. When families are involved, we see increases in consistency of support across classrooms and in home and community environments. We see that children or students are often able to be more effective in generalizing skills from school to home. And then, families often bring voice and perspective that we don’t see when it’s just educators or related service providers. Bringing that added perspective helps us to better understand those dynamics that families have at home, and it helps us to have a better understanding of how parents might perceive a behavior at home and how that might be perceived differently in the classroom. So having family voice, family advocacy, and helping to increase family agency is a critical component in terms of thinking about collaborative partnerships with families.
There are a number of strategies I would suggest to educators to build positive working relationships with families, particularly those with varied backgrounds and lived experiences. One of those is just to practice humility. How do we understand ourselves and what our own experiences and backgrounds are? And then how can we recognize and respect those backgrounds and experiences of the families and students we support? And when we bring those two worlds together, we’re often able to engage in this exercise around humility that can help both educators and families really understand each other’s experiences and how we can work together for the best outcomes for our students.
Another thing that I would say to build positive working relationships with families is to communicate clearly. Communication is a key component of effective partnerships with families. Sometimes families have other children with disabilities, but in some cases, this process is brand-new. So when we come to our meetings with all of our acronyms and all of the jargon that we’re using, it can be quite overwhelming for parents. And so, I always encourage educators to have a quick cheat sheet that you can share with families with terms we’re going to be using and the definitions. Be sure to ask families if they have questions. So really helping family members have access to an understanding of the language that we use, especially in special education, can be really helpful for them. And this is not just at a practical level, but it’s also empowering for them. Having them feel more knowledgeable means that they have that stronger understanding and that they’re better prepared to have more input and engage in advocacy for their children.
For additional information about content discussed on this page, review the following IRIS resources. Please note that these resources are not required readings to complete this module. Links to these resources can be found in the Additional Resources tab on the References, Additional Resources, and Credits page.
Family Engagement: Collaborating with Families of Students with Disabilities This module addresses the importance of engaging the families of students with disabilities in their child’s education. It highlights some of the key factors that affect these families and outlines some practical ways to build relationships and create opportunities for involvement (est. completion time: 1 hour). |
