The Autism Society Event and Education Recordings Archive

Two parents, also professionals, describe the unexpected lessons they discovered through the challenging experience of parenting sons with autism. They provide the unique perspective of representing adult sons on opposite ends of the autism spectrum. The future they feared when their sons were first diagnosed is now, and is not as they expected. Their sons’ successes, despite their very different strengths and challenges, will provide reassurance to worried parents of children with autism and to the professionals who serve them. The presenters, both professionals with many years experience working with families, are parents of sons on opposite ends of the autism spectrum. When their sons were first diagnosed, each mother thought life seemed grim and the future seemed bleak. But that future they feared is now, and they find it full of unexpected lessons and surprising consolations. Each of their sons has achieved much more than they dared to hope for over the years they were raising these unique individuals. This presentation will focus on the most surprising lessons they learned- through their supportive relationships with other parents, their experiences with professionals, and most importantly from their own sons with autism. These are the lessons where the prevailing wisdom did not always tell the complete story. These are the lessons that they wish they had known when their sons were first diagnosed.

Early intervention is not the only key to the future. A promising hope for reducing the challenges of autism is the growing body of evidence that supports the positive impact of early intervention. For this reason, parents often overextend themselves trying to access every possible therapy or strategy for fear that if their child does not achieve a certain milestone by age 5, that they will never achieve it. However the years before age 5 are not the only time when real learning takes place. Individuals with autism are lifelong learners and the presenters will share information about the learning growth that often takes place in later years, even during the adolescent and adult years.

There is no one right therapeutic approach for every child with autism. What works best for one individual on the autism spectrum may not be the right choice for another. There is a tendency to view educational and treatment approaches for autism as either/or choices. Many treatments and therapies are not mutually exclusive but can be successful in combination with other strategies. The presenters will emphasize the need to look at each child individually to determine what approaches best fit the child and the needs of the family.

Effective advocacy is more than knowing your rights. Effective advocacy requires an understanding of the stress that parents and professionals each bring to the relationship. Collaboration is key and requires good communication and negotiation skills. When parents bring their emotions into a parent/professional relationship, the focus turns to the parent and is no longer on the child with autism. The presenters will describe strategies to keep the focus on what is best for the child.

Raising a child with autism is a marathon not a sprint. Taking care of ourselves both physically and emotionally and balancing family life are essential to building a quality life. The presenters will suggest ways parents can avoid “burnout” and learn to take care of themselves over the length of this journey. They will discuss the importance of taking breaks and using respite opportunities. They will also emphasize the benefits of reaching out to friends for support and the importance of retaining your sense of humor.

Academic success is not everything. It is easy to focus on the academic strengths many individuals on the autism spectrum have. However it is also important to focus on the functional skills required for independence and self-care. Children with autism will become adults and will need to advocate for themselves at whatever level possible and adapt to living in a community. The presenters will stress the importance of starting self advocacy early and working on functional skills and social work behaviors.

There is more that unites parents across the spectrum than divides them. Parents gain strength, hope and invaluable practical advice from other parents regardless of the functioning level of their child. While the only shoes we walk in are our own, parents walk many of the same paths. The presenters will share the similarities that have united them even though their sons have different challenges and strengths. They will emphasize the importance of parents advocating together for all individuals on the spectrum.

There are surprising consolations in the experience of raising a child with autism. The presentation will close with the presenters describing their personal experiences with letting go of their adult sons with autism, one to a residential farm community and one to college and independent apartment living. They will discuss how letting go requires parents to create new roles and relationships with their young adults and with the professionals who work with them. They will also describe how times of transition require parents to take risks that can make them feel a variety of uncomfortable emotions such as fear, sadness and powerlessness. The presenters will suggest strategies to help parents get through this difficult time such as: realistically evaluating what their young adult may need and want, by reaching out to other parents and professionals, and by visiting programs and becoming knowledgeable about the options available. They will also emphasize the importance of the entire autism community working together to improve the quality and availability of services for all adults with autism and their families.

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