Five Issues Facing Families with Autism Spectrum Disorders (ASD)

 By Marvie Ellis, M.S., CCC-SLP

 Over the years, I have spoken with several families of children with autism spectrum disorders about the various challenges they encounter. These range from receiving emotional support to getting the latest biomedical information.Five main issues, listed in random order, were discussed most often:

As a disclaimer, these are the opinions of many families that have come to my private pediatric practice and do not represent all families and their opinions.  Some families have a difficult time getting their insurance plans to cover specific treatments. 

Some plans offer a limited number of visits, ranging from 20 to 60 visits for one calendar year.  Other plans will not cover speech-language services if a child is over the age of three. 

In addition, insurance companies limit the number of providers within a given area.  The waiting list could be several months long.  Sometimes the behaviors of children with ASD are unpredictable and frightening to people who are unfamiliar with the disorder.

In addition, parents of typically developing children don’t know how to engage the child with ASD or the child’s parents.  Because the child with ASD does not have a visible syndrome, so the expectations of social engagement are misleading to others.

Even people who have some awareness about autism may know only the medical definition.  However, recently there has been an effort by the mainstream media to make autism more widely known.  Not all therapists are trained in the various techniques used to enhance the skills of the child with ASD. 

Well trained speech-language pathologists and occupational therapists 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).  

Depending on whether a child’s school advocates services and educates teachers and aids about ASD, parents can find it difficult obtaining appropriate services for the child.  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 behaviors.  This training is vitally important for parents of children who are newly diagnosed with ASD.  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.  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.

While some school districts and private practices offer special outings and absorb the costs because of their commitment to families, parents of children with ASD usually find themselves at home with no social outlet for their child and no break in the routine for themselves.  Hopefully, we can enlighten those who are not aware of these issues and comfort those who need to be reassured that their voice is heard.Published as:: The Top Five Challenges Facing Their Families,” -ADVANCE for Speech-Language Pathologists & Audiologists, 15 (17): 15, 18