Five Issues Facing Families with Autism Spectrum Disorders (ASD)

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Pediatric speech-language pathologist and award winning children's autism author, Marvie Ellis, reports five major concerns for families with children with autism.

Marvie Ellis, a pediatric speech-language pathologist and author of two award winning children's illustrated autism books has spoken with several families of children with autism spectrum disorders about the various challenges they encounter. Five main issues, listed in random order, were discussed most often: insurance, social isolation, high quality therapy, school support and social support systems. The issues addressed were from families of children with severe to moderate functioning autism disorders.

Families reported encountering difficulties getting their insurance plans to cover specific treatments. Treatment examples are speech-language therapy, hippotherapy (horseback riding), music, and art. Some plans offer limited number of visits per calendar year. These visits involve a combination of speech-language, occupational and physical therapy services. Many plans will not cover speech-language services if a child is over the age of three unless due to brain injury, not developmental delay or autism.

Insurance companies also limit the number of providers within a given area. Consequently, if there are two providers in an area using a family's insurance, only one may service children with ASD. The waiting list could be several months long. The problem of obtaining coverage for services and finding providers is even worse if a family has Medicaid as their only coverage.

Social isolation results if family & friends avoid opportunities to engage a family with a child who is diagnosed with ASD, possibly due to fear or lack of education. In addition, some parents of typically developing children don't know how to engage the child with ASD or the child's parents. Why? Because the child with ASD does not have a visible syndrome, so the expectations of social engagement are misleading to others.

Another issue for families is finding qualified therapists. Not all therapists are trained in the various techniques used to enhance the skills of the child with ASD. Parents need to know that is always appropriate to ask therapists about their level of interest and training in working with this population.

Well trained speech-language pathologists should be familiar with sensory integration, oral motor therapy, augmentative devices, sign language, muscle tone development, and play-based therapy, as well as Picture Exchange Communication System (PECS) and applied behavioral analysis (ABA). They should also know the importance of additional treatment via referral options to other specialists.

Families also have difficulty with adequate and appropriate school support. Some school districts provide special courses in autism training for their teachers and have certified autism specialists to oversee the population. Districts that do not provide this important training may place children with ASD in an inappropriate school setting with little to no social engagement with typically developing children during their school day. Teachers and aids with no knowledge of the importance of a sensory diet can give a child with ASD foods that may cause adverse reactions and aggressive or non-responsive behaviors.

Finally, families stated needing better social support. Parents of a child with ASD rarely have the opportunity to go to a public park and experience relaxed play dates with other parents and their children. Mother Morning Out and child day programs usually do not permit youngsters with ASD due to a lack of assistance, staff, liability issues, and/or training. Children with ASD often are not able to join gym groups or karate classes or go to the movies or the mall. Parents do not have places where they can take their child without it becoming an expensive outing or unless an event is offered by a nonprofit organization. One parent told Marvie, "We get to have a date every year and a half."

As a disclaimer, Marvie stated, "These are the opinions of many families I know personally and do not represent all families and their opinions." Parents interested in giving their opinions regarding issues they have may go to Marvie's blogsite at http://www.kidsautismbooks.blogspot.com and post their comments.

About Marvie Ellis:

Marvie Ellis is a national consultant for parents and educators regarding autism and other communication disorders, a certified pediatric speech-language pathologist, and an author of two award winning children's illustrated autism books, "Keisha's Doors: An Autism Story Book One" (ISBN 1-933319-00-3), 2006 Benjamin Franklin Finalist & " Tacos Anyone? An Autism Story Book Two" (ISBN 1-933319-02-X), 2005 Barbara Jordan Media Award winner.

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