Children with Autism and Blindness: Misunderstood, Mislabeled, Misdiagnosed

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We are happy to bring you information about another telephone support group available to you.


By Dr. Susan Barron, PhD and Facilitator for the Lighthouse Guild Tele-support group for Parents of Children with Autism with Blindness.

Misunderstood, mislabeled, misdiagnosed. How many times since the birth of your child has this been the judgment of others about your boy or girl's behavior, ability, or functioning? How hard and how often has it been your challenge to correct, explain, and advocate for a fair assessment of their abilities and limitations, so that you could obtain the needed services to enable them to live their best lives? And how tired and frustrated have you become in trying to search out the best resources, people, and support to make this possible?

Dealing with a child who is both blind and autistic, with special needs is doubly difficult, because so many agencies and services are set up to deal with one or the other—they're either familiar with or experts on blindness, knowing little or nothing about autism, or they know about and have expertise with autism, but rarely are comfortable with or have knowledge about blindness. And this is where so often, mistakes made about the meaning of your children's behavior and limitations may lead to less than appropriate services offered. Locating the best facilities becomes a daunting task for a parent, filled with complications and frequent discouragement.

To help handle the sometimes overwhelming exhaustion, uncertainty, and confusion, the Lighthouse Guild with the National Association of Parents of Children with Visual Impairments (NAPVI) offers a free national telephone support group specifically for parents of children who are blind with autism to come together. They have an opportunity to share, support, and encourage one another's efforts as they go about the daily routines which often sap their energies. It helps them to not feel alone and to try to stay upbeat when they meet the many obstacles that stand in the way of getting what they hope will be the best for the people they love the most. They get to laugh at the absurdities or cry about their struggles, but always be understood. They hear which strategies parents have used successfully, and learn how to avoid or go beyond what is unlikely to meet their goals.

In addition, participation in the group often provides some useful information when there are guest speakers. Among some recent ones have been:

  • The owner of a clothing company who sells garments without buttons, zippers, hooks and eyes, that are reversible and made of soft, smooth texture.
  • A physician who has done research linking autism to gastroenterology problems and has treatments for same.
  • A lawyer who discussed setting up special needs trusts.
  • A legally blind actress who talked about teaching children facial expressions and hand gestures and how close to be to others' physical space and be comfortable.
  • An orientation and mobility specialist who instructs students how to use sound cues and clicks to determine location and the nature of objects in space.
  • And the latest, a mother of a 59-year-old blind autistic son who has learned to navigate multiple state educational and workshop settings to secure necessary services and is currently waiting for group home placement.

We are hoping to have someone address the parents on how to comfortably deal with oncoming puberty and emerging adolescence.

The parents see the value of the time they spend. It is both a chance to relax and ventilate among others who "get it" and an opportunity to receive verbal appreciation from those who most recognize how much they do every day. For more information about the free tele-support group for parents of children with Autism and Blindness or to enroll, contact the NAPVI national office at 800-562-6265 or email parentgroups@lighthouseguild.org.

Topics:
Support Groups
Autism Spectrum Disorders

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