Autism 101 for Mandated Reporters

Suspected wandering-based neglect or abuse calls must be investigated to insure the safety of children and adults. Abuse, whether it be against a child or adult, disabled or not, MUST ALWAYS be reported.  If a mandated reporter suspects an abuse case that involves a child or adult with autism or other developmental disability, he/she needs to be very careful, because what may first look like abuse or neglect may actually be solid signs that families are trying to keep their disabled loved one safe and secure in their home environment and community.  The mandated reporter needs to carefully consider the individual’s disability and highlight that SPECIFIC disability in any reporting. The Mandated Reporter may also want to suggest that any Child Protection Officer or Case Manager contact a knowledgeable trained professional who is familiar with the individual’s specific diagnosis and the family history before recommending removal of the individual from a home.

Autism and wandering; A dangerous combination that occurs frequently 

*  Individuals with autism wander, much like individuals with Alzheimer’s disease. It is helpful if you can keep an open mind about autism related wandering just as you would with Alzheimer’s disease wandering.   It may very well NOT be a case of neglect.  It is impossible for anyone or any family to keep a family member intent on leaving under constant supervision.

*   Many individuals with autism are drawn to water even if they don’t know how to swim. Drowning is the most common cause of death among individuals with autism.

*    Individuals with autism may seek water sources even during wintertime i.e. under pool covers, and into ponds that are partially frozen.

*    You may discover reports of children and adults with autism who may remove clothing, wander onto or walk/run near roadways, onto train tracks, near dumps or alleys, into wooded areas and  abandoned homes and structures, climb up to places of height, i.e. roofs, bridges, water towers, power lines, attempt to, and enter occupied dwellings.

*    Disturbed sleep patterns are extremely common in the autism population. Wandering at night is also common.  Sleep deprivation among caregivers is chronic and longstanding and can cause an inability to keep careful watch over an individual with special needs. 

*    Families should be offered POSITIVE WANDERING PREVENTION ASSISTANCE. The wandering of a child or adult with autism will not stop by putting them in state custody. Alarm systems that work for Alzheimer’s patients may work for individuals with autism. Project Lifesaver, ION Kids and other tracking programs have been proven helpful. Providing a Premise Alert Form and techniques on how to keep individuals safe are all effective interventions that professionals can offer to assist parents and caregivers. Go to www.papremisealert.com for a free form and information.

Physical signs 

*   Individuals with autism show no physical characteristics. 

*   Old scars from Self-Injurious Behavior (SIB’s) a phenomenon that is frequently found in people with autism. Some individuals will bite, scratch, cut, or otherwise mutilate themselves to a point of leaving scars and marks.

*   Old scars that look like they didn’t get proper treatment are not uncommon. When individuals with autism are injured and are left with a wound that requires stitches it can be difficult if not nearly impossible to either put the stitches in because the individual with autism will need to be fully sedated. This is not always possible and so the child is left with a much larger scar than what one would expect.

*  Old scars from stitches that were successfully put in but ripped out by the individual are also common.

*   Some will have permanent bald patches; no eyebrows or eyelashes from frequent recurrent self-injury.

*   Bruises, old and new, can be from SIB’s or they can be a result of typical events, many individuals with autism have a very high tolerance for pain.  They may lack an understanding of cause and effect, which can lead to reoccurring dangerous behaviors.

What you may see in home settings and some possible reasons why.

*    Individuals with autism may break glass in order to hear the sound or when agitated. Lexan and Plexiglass products are used to protect individuals but also, make a first responder’s job more difficult.

*    Some families use bars, indoor shutters, or other window protection.

*    Windows nailed or screwed shut to prevent elopement.

*    Toys and food in plastic containers, out of the reach of children but in sight is common in homes of children with autism. This is done to teach communication skills.

*  Only a mattress or yoga mat on the floor instead of a bed.  The individual may present behaviors that are dangerous if certain furniture is accessible.  Climbing dressers or bed frame, pulling over furniture on themselves, throwing furniture when agitated.

*    Individuals with autism may wedge his/her head between a wall and furniture for the sensation of deep pressure, which is a sensory need. They then may be unable to remove themselves from these situations so families remove the furniture to protect the individual.

* Some individuals with autism refuse to use sheets and pillows because of sensory issues.

*There may be beds without any blankets, sheets, and pillows. No decorations, pictures, curtains…

*    The individual may engage in “Pica” the act of eating nonfood items, pillows, papers, posters; curtains may be removed to keep them from being eaten.

*    Some families teach bed making and stripping skills by doing it each night and morning.  It may take years for this skill to be mastered.

*    Some individuals with autism suffer from incontinence frequently. Beds may need stripped daily.

*    Feces smearing is not uncommon and often occurs many times during the day and night.

*    Ripping of bedding may be an issue so beds are left stripped on during non-sleeping hours.

*    Pica can also take the form of eating the tacks and tape needed to put up decorations. So, for safety reasons families leave walls bare.

*    There also may not be any soap, shampoo, deodorant or personal care items in view or kept in locked cabinets to protect the individual.

Locks on refrigerators or cabinets

 

*     Locks on bathroom cabinets, to keep individuals from eating medications, cleaning supplies, labels off food. .

*   Food is often in locked cabinets or refrigerators to keep the individual from pouring rice, beans, cereals, juices, milk…. which is often done in an effort to meet a sensory need.

 Locks on interior doors and windows, bars on windows

*    Some families find it necessary to put locks on interior doors. * This is not recommended but is something that does happen.

*    Toys may be kept in plastic containers out of reach or plastic bags. This is done to increase a child’s need to communicate in order to get a preferred item.

*    Locks may be placed on windows to prevent the individual from throwing objects out windows to climbing out on to roofs or leaving the house undetected.

 Locks on gates in yards

*   Families need to do this to keep individuals safely at home and yet allow the individual some outdoor recreational time.

These signs and features may occur in an individual with autism or around their home. It would be prudent to meet with a case manager or school official who is very familiar with autism AND the specific family to be sure that there isn’t legitimate safety reason for what has been observed. It is a tragedy for a family who is doing a good job in an exceptionally difficult situation to also have to defend it in court. It is very difficult for these children if they are removed from their home environment because routine and sameness give them a sense of security.  It truly is a tragedy if that happens because of a lack of education about autism.

 

Written by Susan F. Rzucidlo Additional information can be found at www.papremisealert.com. Compiled by Susan F. Rzucidlo All copyrights are maintained by SPEAK Unlimited Inc.  More information for first responders can be found at www.papremisealert.com All copyrights are maintained by SPEAK Unlimited Inc.  More information for first responders can be found at www.papremisealert.com  POLICY CHANGE AS OF 6/1/08 All rights reserved contact Susan Rzucidlo at SPEAKsusan@gmail.com  for  permission to reproduce.   © 2003-13 This handout is protected by all copyright laws. Any changes or additions must be requested of the author.