Issue #45: Collaborating with Parents of Children with Autism

Developing and implementing effective educational programs that are meaningful for students with ASD involve collaboration with parents. Parents of children with ASD work closely with professionals to obtain diagnoses, early intervention programs and other resources, and are usually knowledgeable about both the disorder and their children. Bringing the experiences and knowledge of parents to the program planning process, serves not only to enhance students’ school success, but also creates a climate for ongoing learning, communication and collaboration.

A collaborative parent-school relationship is based on parents and teachers understanding each other’s perspectives and realities. It is important for parents to have a clear understanding of their child’s school program, the roles of staff members and how individual classrooms meet the diverse needs of all the students.

It is equally important for teachers and school staff to have an understanding of the experiences families go through in living with children with ASD, the interventions they access and the important role that schools play in families’ lives. With these understandings and a commitment to collaboration, parents and teachers can work together to create positive and effective educational programs for students. Each family is unique and has different experiences obtaining a diagnosis, and planning for and adapting to meet the needs of a child with ASD.

OBTAINING A DIAGNOSIS

Obtaining a diagnosis is often the culmination of a long process that parents undergo searching for an understanding of their child. Prior to seeking professional help, parents notice that their child’s development is not progressing as expected and there is something different about the way their child behaves. It is often the family physician who is the first professional contacted. The following are common initial concerns that parents bring to their physicians regarding their child’s development.

  • The child may appear to have unusual listening patterns. He or she does not seem to respond to language, yet seems to enjoy music. This concern may lead parents to explore whether the child has a hearing impairment.
  • The child may seem aloof, make little eye contact and resist attempts to bond with parents. This concern may lead parents to seek advice on how to form a closer attachment to their child.
  • The child may have unusual eating and/or sleeping patterns. Many children with ASD are picky eaters and parents are often concerned that they are not getting adequate nutrition. Other children with ASD have difficulty sleeping and are exhausted.
  • The child may be slow developing language and communication skills.

Once concerns about a child’s development are raised, there are many avenues physicians may take to investigate the issues. Specific diagnostic medical procedures, genetic testing and referral to other professionals, such as speech-language therapists, occupational therapists, physiotherapists and psychologists are often initiated.

While early diagnosis is preferred, there are some children diagnosed in later years. These are children whose early development and behavior was not conspicuously abnormal. It may be that once such a child entered the school system and was observed over time by a teacher familiar with normal child development, the autistic symptoms were detected. Other children may have had a history of social, language, learning and/or behavioral difficulties and were assumed to have other kinds of disorders, such as attention-deficit/hyperactivity disorder or learning disabilities. However, careful observation over time revealed that the behavior was more accurately described as ASD.

Many parents are relieved to discover that there is an explanation for the behaviors their children exhibit. Many parents obtain a diagnosis as a way of determining what support and assistance they can access to best help their children. Although the diagnosis itself may be difficult to accept, the goal for most parents is to access appropriate intervention.

ADJUSTING TO THE DIAGNOSIS

There are many books, articles and research papers about the stages of acceptance families experience when they learn their children have ASD. Recent research studies indicate that people often experience multiple emotions and reactions that don’t necessarily occur in discrete phases. Every family will react differently to the discovery that a child has ASD, and experiences its own unique way of coping and adjusting.

Adjustment often involves accepting the emotions experienced, gathering facts, and helping siblings and other family members understand the disorder. Acceptance occurs as parents learn more about ASD and realize they can take an active role in creating a positive future for their children. Gathering information, meeting other parents of children with ASD, identifying and using professional services, as well as advocating for their children are positive ways that parents can begin to adjust.

DEVELOPMENTAL STAGES AND FAMILY STRESSES

All families go through different stages of development as children are born, grow up and eventually move out on their own. Each stage brings new challenges and demands new accommodations.

Families of children with ASD often face these challenges more acutely, as they deal with the awareness that their children need different kinds of support and intervention at every stage. Parents often find themselves going through an acceptance cycle with each new phase of development. The transitions from preschool to elementary school from elementary school to junior high and high school, and from high school to the adult world may be particularly challenging.

It is important that educators understand the perspectives and experiences that families bring to the home-school partnership. Many parents have a wealth of knowledge about the disorder, resources and interventions, and an overall understanding of what works for their individual child. Families may be experiencing stress and anxiety about the transition from one education system to another. It is also helpful for teachers to understand that there are other factors, such as family size, cultural background, socioeconomic status and geographic location that affect the degree to which families are able to engage in the school-home partnership. Most parents are motivated to help their children, but vary greatly in how they act on this motivation. Some parents have the time, temperament, educational background or knowledge about ASD to work closely with the school staff. Other parents, although motivated and concerned about their children’s development, may not be actively involved in their children’s school programs. Educators need to be sensitive to the perspectives and beliefs families bring to the school context.

CREATING A COLLABORATIVE HOME-SCHOOL PARTNERSHIP

Creating a collaborative home-school partnership must be carefully planned, keeping in mind the ultimate goal of working together to best meet the needs of students. Combining the strengths and knowledge of parents who know their children best and have a history of supporting and advocating for their children, with the expertise of teachers, creates a powerful partnership that directly benefits students. Collaboration between home and school can lead to improved academic and social success, positive attitudes and behavior toward school, better attendance and improved parent-teacher communication.

A collaborative home-school partnership:

  • is an informed partnership where both parents and teachers understand the child’s realities at home and at school
  • uses a team approach to program planning and development
  • establishes a clear home-school communication plan.

BUILD AN INFORMED PARTNERSHIP

Being an informed partner in the home-school partnership requires that each participant have background information when beginning the collaboration process. Teachers need a general understanding of the nature of the student’s disorder, the student’s history, previous interventions and their effectiveness, and specific strengths and areas of growth. It is important for teachers to understand the experiences parents have gone through, and have a global knowledge of the goals, dreams and hopes that they hold for their children. Parents, in turn, need a thorough understanding of how the school system works, what program options are available and how educational decisions are made at the school.

ESTABLISH A TEAM APPROACH

Collaborative partnerships involve a team approach. Programming for and meeting the unique needs of children with ASD involve complex decisions that parents and teachers cannot make in isolation. Team members can include administrators, special education consultants, teachers, teacher assistants, therapists, parents and other community resource personnel. The school-based team is a critical part of the individualized program plan (IPP) process. Together, the team works to set meaningful academic and social goals and objectives, select strategies, develop positive behavior plans, and devise social programs to enhance peer relationships both at home and at school. The team can also plan and implement programs and in-services to augment parent and teacher knowledge in the field of ASD.

PLAN FOR COMMUNICATION

The key to effective collaboration is communication. In order to maximize children’s potential, and generalize skills both at home and at school, parents and teachers will need to communicate beyond the traditional parent-teacher interview modes. Parents and teachers need to work together to develop an effective communication plan. This plan should address how teachers and parents will communicate on a regular basis, and how emergent concerns will be handled. A variety of communication methods should be considered, including daily diaries, home-school communication books, notes, letters, journals, newsletters and regular phone calls.

Parents often want daily in-depth reporting about their children’s learning and behavior. While meaningful communication between home and school is an essential ingredient for successful collaboration, it is important for teachers not to become overwhelmed with the task of reporting. It is often helpful for teachers and parents to prioritize specific areas to discuss on a daily basis. The communication protocol should be re-examined periodically to ensure that it continues to meet the needs of parents and teachers.

It is important for teachers to identify the amount and type of communication that parents require and to keep in mind that parents need to hear some positive news about their children. Like all parents they appreciate personal messages that recognize their children’s achievement and progress.

FACILITATE COLLABORATIVE RELATIONSHIPS

Collaborating with parents often involves scheduling meetings for a variety of purposes. These meetings help teachers gain understanding of the child and family, and the supports the family has in place. These meetings provide opportunities to clarify roles, set goals and objectives, and develop strategies and communication plans in order to effectively plan and implement education programs.

Parents may be working with other professionals who have valuable suggestions for education programming and developing behavior plans. Ask parents who they think should attend meetings to share information and provide ideas for strategies. Schools may also be able to access professionals within the school division who can contribute to the collaboration and planning process.

WHEN COLLABORATION BECOMES DIFFICULT

There are times when in spite of all good intentions, the parent-school partnership becomes difficult and collaboration wanes. When this occurs, it is helpful for educators and parents to work towards understanding each other’s perspectives to better determine the barriers to collaboration and ensure that the child will not be negatively impacted.

General principles of mediation can be used to maintain and improve the home-school relationship. Identifying educators’ and parents’ mutual concerns and goals is a starting point for working together. Too often, parents and teachers become fixed in their positions and lose sight of their goals. When the focus is on the needs of the child, parents and teachers may be able to move beyond fixed positions to work creatively and cooperatively towards solutions.

It is important to be aware of the following types of issues which may contribute to parent-school conflict. Parents and school personnel may have differing views of children and their needs. Take constructive steps to reach a shared understanding by identifying the underlying needs of parents. Listen to and incorporate parents’ perspectives concerning long and short-term goals for their children to help narrow the gap between opposing views. Be cognizant that the language used to describe children takes into account the whole child—abilities, strengths and aspirations, as well as needs.

In some instances, it may be helpful to enlist an objective, mutually acceptable third party to facilitate collaboration. Collaboration will be enhanced when parents and school staff are committed to working together for the best interests of children. Parents and teachers are the two most powerful influences in children’s lives. Working together in a collaborative partnership promotes meaningful and effective learning.

 

Acknowledgment

Written by Susan Stokes under a contract with CESA 7 and funded by a discretionary grant from the Wisconsin Department of Public Instruction.

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