The Path to Autism Self-Advocacy


As parents of children with autism, we are their best advocate and indeed, advocating for them becomes a full-time job in itself. In the best of all possible outcomes, our children will one day be able to advocate for themselves. 

In a recent interview with Autism Hangout, clinical psychologist and author Dr. Sarita Freedman has identified three steps to achieving self-advocacy for those with autism.

The first is awareness. The child with autism becomes aware of their feelings and the feelings of others. They become adept at identifying sources of personal stress and developing strategies of self-regulation. Past experiences are able to be retrieved and utilized. 

After this comes acceptance. They know and assimilate that they have autism. They don’t have to like it, but they do have to recognize it as a part of who they are. 

Out of this grows self-advocacy as they feel empowered to disclose their autism and seek accommodations in school and the workplace that assist them in their daily lives.

In delineating this progression, Dr. Freeman has also identified a spectrum within the autism spectrum. Still, it’s not completely linear. My own sons with high-functioning autism have both accepted their autism. But one of them still struggles with self-regulation if his environment is not carefully crafted to be free of stress. He certainly shares with others that he has autism, but has not yet articulated what that means in terms of understanding him personally nor the accommodations he requires. 

My other son’s progress is more of a straight line. He has by-and-large achieved awareness and acceptance, yet has never disclosed his condition to anyone. And at age 15, has never taken the initiative to approach his teachers for homework accommodations, despite being encouraged to do so for years. An extremely shy and private person, I don’t know that he ever will. While very bright, he is constantly besieged by his homework and never makes grades that mirror his true abilities. For him, technical school seems the best option so that he can pursue his special interest in electronics and jettison the stress of studying subjects that don’t pertain to his passion. 

A book exists to help young adults on the autism spectrum explain their personal qualities, strengths, and difficulties to friends, teachers, employers and colleagues. Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum by Stephen Shore provides great advice that can help individuals with autism achieve their personal and employment goals. Even though my sons are fifteen, I’m going to buy a copy for them in hopes that it sparks something in them. Their level of independence as adults remains to be seen.

Of course, self-advocacy isn’t an achievable goal for every individual with autism. Not everyone can be the next Temple Grandin. Progress in awareness will be the life journey of some. 

And what a noble journey that is.

4 Responses to The Path to Autism Self-Advocacy

  1. Jennifer says:

    Lack of brain synchronization is a factor in autism according to a new study. Another study suggests siblings share a genetic predisposition. Here is a great article about the study:
    http://www.brainbalancecenters.com/2011/06/study-shows-poor-brain-sync-related-to-autism/

  2. Susan says:

    Thanks!

    SM

  3. Hi Susan, Thanks for offering such a wonderful synthesis of my thoughts on self-advocacy, and for posting the video. You’re absolutely right, there is a continuum or spectrum of the ability to achieve self-advocacy and not all individuals will be able to achieve higher levels of self-advocacy. So much depends on the functioning and language level of the individual. What I do see is that it self-advocacy is a process that unfolds over time, and many individuals are still working on this skill well into their 20′s. Typically we’d expect a neurotypical individual to have this skill at a younger age. What’s encouraging to me is that given time and ongoing intervention, people on the autism spectrum continue to grow and mature, some just at a slower pace. Hopefully you’ll experience this growth with your sons as they progress on the self-advocacy trajectory. Thanks again for posting my information! Sarita Freedman, PhD

  4. Susan says:

    You are most welcome. I found your perceptions very interesting and thought provoking.
    It’s a delight to hear from you!

    Susan Moffitt

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Did You Know?

  • * In 1970, Autism affected 1 out of 10,000 children
  • * Autism now affects 1 out of 88 children
  • * Autism affects 1 in 54 boys
  • * 1.7 million Americans have some form of autism
  • * 4 out of 5 autistic children are boys

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