Receiving a diagnosis or verification of an autism spectrum disorder (ASD) is hard enough for a family. When you add in trying to formulate the best team possible for your child ’s education and treatment, that news may become downright over whelming. For the professional , working with a family to establish educational goals for a new student with autism may present complex discussions and questions as well. The challenges to both parties may threaten full collaboration and not serve the child most efectively.
A successful parent-professional collaboration is influenced by a variety of factors. This article provides a first-hand account of a successful partnership from the perspectives of a parent and professional, as well as some helpful tips for making your efforts at collaboration more successful.
Finding Out
A parent’s perspective: Georgann Albin
The article in the local paper about autism seemed a bit too familiar to me. As I continued to read further, I realized that they were describing my son Aaron, and his behavior and characteristics. It was July, and little did I know that this article would lead us to an autism verification and diagnosis by September.
The first, and one of the most important, of many desperate phone calls I would make was to Laura Maddox with the Nebraska Autism Spectrum Disorder Networks, a project of the Nebraska Department of Education. I already had done extensive research on the Internet, and within just a couple of days, I had learned a lot about ASD and had even printed some pictures to help Aaron communicate. Laura talked to me for quite a while, calmed me down and explained some basics.
A professional’s perspective: Laura Maddox
When I answered my phone that July afternoon, I didn’t know who would be on the other end, nor did I know it would be such a memorable call. There was a mother of a young child who recently had read an article in the paper that listed the “red flags” of ASD. I could hear the concern in her voice; her son—3 years old—had limited communication and did not play with other children or with his toys appropriately. He had so many characteristics of autism, she said.
As I spoke to her, I tried to give her enough information to help her make positive, informed decisions and to find out more about her son and whether he had autism. I explained the difference between an educational verification and a medical diagnosis, something that I have found to be quite confusing for parents, related service providers and even educators. In Nebraska, these are distinctive and mutually exclusive processes, unlike in many other states. I also gave her contact information for the local parent support group and names of other professionals who would help guide her through the process of verification and developing an appropriate educational program if her son was verified with ASD.
Learning and Growing Through Parent-Professional Collaboration
Georgann Albin
I searched the Internet extensively about autism therapies, strategies and techniques and, with Laura’s help, we were able to begin to address Aaron’s communication needs. The verification process was completed at school (he was verified), and the time came for that first team meeting. From my research on the Web, I expected to walk into a room, sit down and listen to professionals throw out jargon I wouldn’t understand, so I came prepared. I walked into the room with a huge three-ring binder full of everything I had researched and learned about autism, along with pictures of Aaron, so the team could see the beautiful child we were working for. I also had a big box of the best cookies in town. Several team members told me later that the binder made them nervous; they thought I was going to be one of those parents who knew everything and was hard to work with, but as we talked everyone realized we were all on the same team.
It was such a relief to find people who knew autism and were willing to take the time to help me understand strategies so that I could use them as well. I offered to help out and really be a part of Aaron’s team at school. I was so blessed to find the people I did to help Aaron. They worked with me, and it made the difference between a life of mere acceptance and the life filled with experiences that Aaron leads.
Laura Maddox
The parent-professional relationship is often a balancing act for special educators and other professionals. While giving family members too much information may be overwhelming, not enough may be detrimental. It is important to be a good listener and to take time to understand why family members ask the questions they do. Understanding that family dynamics and preferences greatly influence how family members address the education of their child is critical to parent-professional collaboration. Our role is not to make choices for them, but rather to provide important information and guidance, while respecting that they will be still be dealing with these issues in five or 10 years—and the outcomes of our work will continue to affect their lives.
Autism’s Impact on Parent-Professional(and Professional- Professional) Collaboration
The unique way autism impacts each person with autism and the myriad of treatment options can have the potential to be confusing to parents and professionals. Even as this article is being published, there are efforts underway to further enhance our understanding of evidence-based practices. It is vital that parents, educators and administrators seek out information related to effective practices, as well as child and family preferences, and use this knowledge to guide programming decisions. Most importantly, family members should be active participants in goal development, implementation and progress of evaluation.
Another related, yet unique, element that impacts educational programming for children with autism is the availability of outside agencies and private treatment programs, offering families a choice between school-based services and private services. However, in actuality, an opportunity exists for collaboration among and within the growing community of service providers and educators who work with people with autism. Such a collaborative program has real potential to lead to substantial benefits for the child by enhancing generalization and maintenance of skills, in addition to drawing upon the expertise provided by everyone involved. Establishing this collaboration requires an emphasis on determining functional priorities and goals related to educational needs, as well as respect among all team members for the variety of professional and personal roles they play and models of intervention they use. It also is vital that all team members recognize that there are differences in practices between school programs and those implemented in private or clinical settings.
How do we make true parent-professional collaboration happen? Strong collaboration is achieved through the contributions of parents and professionals, individually and as a whole, by way of expertise, enthusiasm and dedication to the person for whom they collaborate.
Advice for Parents
1. Communicate regularly and positively with your child’s team (get to know administrators, invite team members for coffee, bring cookies).
2. Understand the different organizations that provide services to families of people with autism and their capabilities (research, ask questions).
3. Determine what services and resources you are looking for and know how to articulate them to professionals.
4. Be aware of “cure” scams. If it’s too good to be true, it is. To keep your wallet and family intact, it’s best to walk away from anyone who offers you a cure.
5. Consider the relevancy of different treatments in relation to your child’s needs.
Advice for Professionals
1. Plan regular, ongoing communication with families and other professionals.
2. Consider what you say and how you say it (miscommunication and hurtful words often are unintentional).
3. Take time to understand families’ needs and priorities.
4. Listen to concerns and address them through the exploration of possibilities.
5. Be a trustworthy source of information and resources.
6. Don’t worry about always having the answer. No one knows everything.
7. Respect the expertise of parents and other professionals.
Positive Steps to Improving Parent-Professional Collaboration
- Learn about each other; build a trusting relationship.
- Be open-minded—respect the ideas of others.
- Recognize and affirm different perspectives.
- Be willing to learn and ask questions.
- Keep open communication about successes (don’t forget to share the positives) and needs.
- Share new ideas and strategies.
- Work together to accomplish goals.
- Agree to disagree—make decisions based on the data, not on emotions.
- Make programming choices and decisions based on individual and family needs and preferences.
- Surround yourself with positive, passionate people who have the student’s best interests at heart.
About the Authors
Laura Maddox, M.Ed., coordinates the Nebraska Autism Spectrum Disorders Network, a project of the Nebraska Department of Education.
Georgann Albin is the mother of three children and the recently elected president of the Autism Society of Nebraska .
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Reprinted with the permission of the Autism Society.
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