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How Educators and Support Professionals Can Help Families

Adapted from Autism Spectrum Disorders from A to Z

by Barbara T. Doyle and Emily Doyle Iland

The greatest discovery of my generation is that human beings can alter their lives by altering their attitudes of mind.

--William James

Although this material is directed to professionals supporting families of people with autism spectrum disorders, the information given is likely to assist professionals in supporting the families of any person with special needs.

Families have a lot to think about. Families appreciate staff that understand the emotional and complex issues in family life. Sensitivity, support and assistance from staff can dramatically improve the quality of life for people with Autism Spectrum Disorders (ASD) and their families.

Here are some ideas that may help professionals provided the best and most effective support to families:

1. Remove the burden of judgment from yourself and the families that you support. Assume that families are doing the best they can with the resources and demands that exist. It is likely that any one of us would be overwhelmed by the situations in which many families find themselves. If you see that a family is not doing well, don't blame-- ask and tell. Ask what is going on and if there is anything you can do to help. Tell the family about resources, make referrals or put then in contact with others for help and information.
   
   
2. Strive to understand the entire family system. If you can, help parents identify resources for other issues in the family, even if not directly related to the needs of the individual with ASD. Individuals with ASD will have a better life if the needs of all family members are addressed.
   
   
3. Familiarize yourself with all the services in your community, not just those provided by the group that employs you. This may include mental health supports, such as counseling and therapy, to help the family communicate, problem solve, deal with emotional issues and plan. You may also need to provide information about social work services designed to help families find the help they need in their communities find financial aide and assist with family issues and needs. Professionals may be able to help parents get information about guardianship, estate planning and other important topics. If you do not have access to this information, try to provide the contact information for at least one local organization or person that can make connections and provide the information parents need.
   
   
4. Help families identify sources of stress, the effects that stress is producing in family members and possible options for dealing with stress.
   
   
5. Help families prioritize goals and activities. No family can do everything well all of the time. Help families give themselves permission to put siblings' needs as a top priority sometimes. Help families recognize that time relaxing with family members is as important for every family member as goal-directed activities.
   
   
6. Preserve the role of parents as parents of all the children in the family. Do not ask parents to implement unrealistic programs that do not take into account the time demands placed on the parents by other children and other responsibilities.
   
   
7. Give parents "permission" to do what works, even if it is somewhat unconventional. For example, some families do not always attend parties or functions together. Sometimes, one parent will take the individual with ASD to one activity, while someone else takes the other children to a different place. Some people would object to this saying that the whole family "should" do everything together. Others would tell you that by sometimes doing things separately, each member of the family gets their needs met more fully. Accommodating the individual with ASD at other times becomes easier.
   
   
8. Allow and promote a "hopeful" attitude in family members regarding their family member with ASD. Do not label families as "unrealistic" or "in denial" if they are hopeful for an active and successful life for the child or adult with ASD. Assist them in taking all possible steps towards goals they have chosen for the individual. If the goal turns out to be unrealistic, families will recognize this themselves over time.

Parents and professionals need to have lifetime goals for each individual. A lifetime goals planning session could be an annual event for teams working with individuals with ASD. Of course, the individual can be included in the planning process to the greatest extent possible. In the lifetime planning meetings, everyone discusses the interests, abilities, preferences and wishes of the child or adult with ASD and envisions the best possible life outcome for this child or adult and the family. A lifetime plan gives staff and parents a basis upon which to discuss and make decisions about curricular content, types of activities, intervention strategies, communication goals and skills training. Over time, lifetime plans will naturally change. "The Personal Future's Planning Model" from Minnesota is one way to plan for the lifetime of the individual.

Professionals need to model positive interaction when they are with the individual with ASD. Family members need to see professionals modeling responsiveness, flexibility and sensitivity to non-verbal communication. Efforts by professionals to understand the individual's behavior as communication helps the family learn to do the same thing. Demonstrating understanding of the unique sensory processing challenges and needs that each individual with ASD has helps families to be sensitive and aware. Professional interaction should model respect and unconditional acceptance.

Professionals need to model relationship building as the primary goal of interacting with individuals with ASD. Relationships and communication are core deficits in ASD. Relationships need to be carefully nurtured and protected. Basic relationship building qualities are trust, listening, understanding, helpfulness, caring and acceptance. Success in life may have more to do with having quality relationships than with simple compliance and academic knowledge. This is something for teams to think about.

Professionals need to share realistic and accurate information about the laws affecting the institutionalization of people with disabilities. Currently, in many states, criteria for institutionalization are, "danger to self, and/or danger to others." To ensure a lifelong place in the community for every individual with ASD, dangerous behavior must be understood and effectively treated until it is no longer part of what the person does.

Professionals can help staff and parents recognize the dangerous and potentially dangerous behaviors that can put the person with ASD and others at risk. Professionals can teach parents and staff effective ways of anticipating and preventing dangerous behavior, de-escalating problems and dealing with a crisis in all environments.

If you are a professional staff person, you have tremendous power to improve lives. Be introspective and learn about your own motivations and needs. Become the best listener and communicator that you can. Cultivate objectivity and non-judgmental language and thoughts. It is a wonderful moment when a family member turns to you and expresses their gratitude for what you have done and understood or for your kindness and courtesy.

Remember the wise words of teacher Haim Ginott: "I have come to the frightening conclusion that I am the decisive element in the classroom as a teacher, I possess a tremendous power to make a child's life miserable or joyous. In all situations, it is my response that decides whether a crisis will be escalated or de-escalated and a child be humanized or dehumanized."

No one can do everything that is needed to help all families. In the past it was not always clear what services needed to be available and how to best present these services to families. Now we do know what to do and how to do it. Families of children and adults with autism and other disorders are telling us what is needed.

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About the authors

Barbara T. Doyle, MS is a clinical consultant and co-author with her sister Emily Doyle Iland of ASD from A to Z (a Spanish language edition of the book is also available).  For more information about the book, go to http://www.asdatoz.com.

You may contact Barbara by email: btdoyle00@insightbb.com or by writing to #1 Forest Green Drive, Springfield, Illinois 62711.  Barbara's website is http://www.barbaradoyle.com.

Emily Doyle Iland, B.A, is Barbara Doyle's sister and mother to Tom, Lisa and Danny. She has actively learned to help herself and her family understand Autism Spectrum Disorders (ASDs). She is paving a path to support her son in educational and social settings. She now works as an educational consultant and advocates for professionals, families and children, sharing her knowledge and experiences to support and inspire others. Emily is the California Representative of the University of Minnesota's Yes I Can Program for Social Inclusion. Emily is also working on the C.L.E.A.R. Project to promote safe interaction with Law Enforcement and Prevent Involvement in crime. Emily is bilingual in Spanish, has translated ASD A to Z into Spanish, and is available for speaking engagements in English or Spanish! Contact Emily at emilyiland@socal.rr.com.

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