The Autism Society Event and Education Recordings Archive

Two parents of children on the spectrum, one of whom is also autistic, discuss parenting from a self-advocacy perspective. This workshop emphasizes finding a balance between the needs of the child and the family on the one hand and preparing our children with ASD to become community members on the other. Topics include standing up for our children’s dignity and rights and accepting their uniqueness while simultaneously challenging our children to fulfill their potential and become integrated into the community. The self-advocacy movement, which is comprised of parents and professionals as well as self-advocates, challenges the autism community to consider the role of diversity in human society. Rather than focusing energy on curing or normalizing autistic children, the self-advocacy philosophy encourages parents to both treat and accept autism. Autistic children may need specialized medical care and certainly benefit from early intervention and plethora of research-backed strategies that can improve ability to learn and quality of life. At the same time, most autistic people – even those labeled “cured” or “recovered” – self-report remaining autistic in terms of how they think, feel, live, and process the world throughout their lives.

With this in mind, how can parents best support an autistic child in finding ways to meet his or her needs as a unique individual while at the same time maximizing integration into the community. What does parenting from a self-advocacy perspective involve? How can the needs of the family as a whole, including the needs of parents and siblings, be taken into consideration as parents struggle to teach, heal, and help the autistic child? And what are the goals of parenting from a self-advocacy perspective

First, this workshop will explore the issue of cure and the push for normalcy that is prevalent throughout the autism community. What is the difference between cure and treatment, therapeutic intervention and becoming “indistinguishable” from peers? When a child is identified with an autism spectrum disorder, parents are barraged with information – as well as misinformation.

Parents may feel the pressure to hurriedly implement as many treatment options as they possibly can in the rush to rectify, resolve or “cure” their child’s autism – often to the exclusion of all else in their lives. Parents are vulnerable financially and emotionally to claims that various modalities or protocols can normalize a child and they may choose treatments that lack evidence of efficacy and safety. Conversely, parents may feel pressure to choose certain interventions over others, limiting exploration of potentially valuable options and preventing the creation of a patchwork of treatments that, sewn together, may be a better match for the child. Further complicating matters, not every child responds the same way to treatments or educational approaches. One size does not fit all. As a result, it is easy for parents to become overwhelmed along our journey to determine what is best for our child. Part of parenting from a self-advocacy perspective includes advocating on behalf of your child, trusting your parental instincts, and affirming your knowledge of your child and his or her needs. Workshop presenters will discuss ways parents can gain confidence and face decision-making with strength and conviction.

Next, this workshop will explore family dynamics in the context of self-advocacy. A rarely discussed aspect of treatment for autistic children is the impact of the treatment on the rest of the family unit. Some parents may want to delegate intervention tasks to professionals or may need to if both parents must work. Conversely, other parents may want to take on the tasks of a particular intervention themselves. Siblings may be impacted by the flow of professionals in and out of the home; the chaos of scheduling multiple appointments on top of school, homework, and extracurricular pursuits; or the social impacts of autism. Again, different children, and different families, have unique responses and unique needs. How can parents ensure their autistic child receives the treatments and intervention he or she needs, other children and the parents also have their needs met, and at the same time, everyone still has the space, freedom, and support to engage in all the “normal stuff” of family life?

The third component of this workshop will explore themes of community integration from a self-advocacy perspective. How important is “fitting in”? Are there multiple ways for someone to take his or her place in society? What really constitutes success? When we do not challenge our children with ASD to fulfill their potential, we are not serving them, or their communities. But parents must prepare the child for community life and prepare the community to accept and appreciate the child. The ultimate goal is for the child to become part of the community, but we need to review this process and come to see community integration as a reciprocal endeavor. While the child must know how to advocate for his needs and must gain skills in self-regulation, functional communication, and social interaction, we must simultaneously ask society to broaden its view of what autistic individuals have to contribute to the world and to tolerate the unique mix of strengths and challenges our autistic loved ones express. How can parents navigate this delicate balance between preparing the community for the child and preparing the child for the community?

Lastly, the importance of unification in the autism community will be explored. Whatever someone’s philosophy, dreams, or preferred method of intervention, we all have the same goal: the best quality of life possible for the autistic children and adults we love and live and work with. Is parenting from a self-advocacy perspective one way to foster unification and heal rifts in the community? Whether a child makes extraordinary gains through various interventions or remains in need of significant supports throughout the lifespan, remaining allied with the autism community is crucial for promoting mutual interests, protecting individuals from discrimination, sharing insights, and supporting each other through the push-pull between acceptance and integration.

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