When a Child with Special Needs Wanders Away

autism-wandering-child

autism-wandering-childWandering for children with special needs can lead to children getting lost and parents needing to contact local police or fireman to help locate their child. Because of core behavioral and communication challenges associated with children with special needs, they may not realize they are wandering off or be able to ask for assistance once they do. An example is Mary and her 4-year-old son with Down syndrome, Jake. He has to be watched constantly or he will wander off from her. It only takes a minute while her back is turned for this to happen, even in her own home.

Mary has installed locks requiring keys on the inside of all her doors. “It is harder to get out of my home, then in my home” explained Mary. However, she still has a lot of anxiety about visiting friends and going to public places that aren’t equipped to handle Jake’s ability to escape and wander off in a matter of seconds.

AbilityPath.org Tips for Parents of Children that Wander

Elaine has a 9-year-old with autism, Andy, who wandered off in the middle of the night. She was woken by the police knocking on her door returning Andy to her. She will “Andy-proof” her house and it will work for a while until he figures out how to get past the barriers.

“He will slip thru a window I forgot to latch. He is a regular Houdini in getting out of my house,” said Elaine. “As a result, I don’t sleep much at night as I always have one eye on Andy. In case I do nod off, I have installed a lock on the refrigerator and oven for safety reasons. I have also been known to sleep on the bathmat in the bathroom so I can hear if he decides to turn on the bath.”

Elaine is fortunate that Andy is known by her local police, partly due to her efforts. She created an info sheet on Andy so they better understand his specific behaviors and that he is nonverbal and unable to communicate.
Has your child wandered off? Share your story with other parents

Autism spectrum disorders (ASD) affect 1 in 110 children in the United States, according to the CDC; but, it’s not officially known how often wandering occurs with these children. In a step to better understand wandering and autism, The Interactive Autism Network is recruiting families affected by autism to participate in a survey regarding wandering behavior. To participate in this Elopement and Wandering Questionnaire/Survey, parents should visit www.iancommunity.org. The hope for this survey is to provide information to support a specific diagnosis for wandering resulting in the ability to give it a “diagnostic code,” a classification for clinical and insurance purposes.

A specific diagnostic code would help clinicians as well as police understand what the behavior means, gauge how frequently it occurs and allow for broader insurance coverage for interventions, such as tracking devices. A similar code is in place for wandering when related to dementia.

The Autistic Self Advocacy Network and similar organizations have argued against these efforts. In a protest letter , they addressed the potential concerns that the creation of a diagnostic code would lead to restrictions on people with autism in educational settings and elsewhere, creating further isolation. The diagnostic code could also be used in situations where a child is deliberately trying to escape abuse and has no other way to express discomfort, these groups argue.

Do you think a diagnostic code is needed? Share your thoughts and experiences.

 AbilityPath.org Tips for Parents of Children that Wander

  • Install key locks on all outside doors and keep the key out of reach of your children.
  • Furnish your home with heavy furnishing that can’t be moved. Children will move chairs and tables to undue locks, climb thru windows, and reach ‘off limit’ items in high cabinets. It is also good to bolt furniture and pictures to walls so that they cannot be pushed down – potentially falling down on your child and causing them harm.
  • Childproof electrical appliances. Make sure to invest in high end outlet covers that will work as your child ages.
  • Be cautious with houseplants, many children with autism like the sensory experience of tasting things. Many houseplants are poisonous and can cause harm to your child.
  • Outfit your child with an Autism Medical ID Bracelet.
  • Purchase a GPS tracking device for your child.

The Interactive Autism Network is recruiting families affected by autism to participate in a survey regarding wandering behavior. To participate in this Elopement and Wandering Questionnaire/Survey, parents should visit www.iancommunity.org. The hope for this survey is to provide information to support a specific diagnosis for wandering resulting in the ability to give it a “diagnostic code,” a classification for clinical and insurance purposes.

Do you think a diagnostic code is needed? Share your thoughts and experiences

A specific diagnostic code would help clinicians as well as police understand what the behavior means, gauge how frequently it occurs and allow for broader insurance coverage for interventions, such as tracking devices. A similar code is in place for wandering when related to dementia.
The Autistic Self Advocacy Network and similar organizations have argued against these efforts. In a protest letter, they addressed the potential concerns that the creation of a diagnostic code would lead to restrictions on people with autism in educational settings and elsewhere, creating further isolation. The diagnostic code could also be used in situations where a child is deliberately trying to escape abuse and has no other way to express discomfort, these groups argue.

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