Last year, the Lagos autism community experienced its biggest wandering related scare when one of our kids on the spectrum wandered away from his home in Ikorodu. His family quickly sprang into action releasing pictures and comprehensive information about him. The community helped spread the word via radio, print and social media because we all recognized it as the biggest possible nightmare scenario for any autism parent. Some days later to the glory of God, he was found in a hospital in Marina many miles from his home, miraculously identified by information gleaned from the media push about him.
This story thankfully did not end in tragedy as though battered and bruised from a hit-and-run accident and severely dehydrated, he was reunited with his family. This unfortunately, is not always the case, statistics from the Interactive Autism Community in the US claim that half of all children with autism wander and bolt from safe places often with tragic endings. Kids with autism are more likely to innocently wonder away from a safe environment more so than typical kids and many have gone missing for significant periods of time often with tragic consequences, these incidents are unfortunately on the increase within the global autism community and they pose a serious physical risk to our kids. Here in Nigeria, we do not have the statistics and have always felt autism-related wandering was not a major concern as we all live in houses with high fences, gates and gatemen but we have had multiple wandering cases to disprove that belief and reveal just how vulnerable our kids are even with those measures.
Current research indicates there could be many reasons for wandering incidents but mainly, kids wander either TO GET TO SOMETHING OR AWAY FROM SOMETHING. Possible triggers include enjoying exploring, innocent gravitation towards an item of interest without realizing associated danger or wanting to escape an environment where certain sounds or other sensory input has become bothersome. A new unfamiliar environment can also trigger wandering. The consequent dangers of wandering include possible drowning, exposure, dehydration, hypothermia, traffic injuries and encounters with strangers and law enforcement. Because many of our kids are challenged in language and cognitive function, the onus falls on us parents to provide crucial strategies to counter wandering and develop an action plan to respond to it. There are no fail-proof answers but there are a few things we can consider
All research into preventing autism related wandering commence with
1.SECURE YOUR HOME AND ENVIRONMENT
In our context, we already have high fences, gates and gatemen but we have still seen cases where kids have opened the gates and even wandered past estate gates which are supposed to be a second security barrier. For homes without external fences, it is crucial that doors are properly secured with dead bolt locks or hook and eye locks placed above the reach of the child.
2. ALERT NEIGHBOURS AND SCHOOLS
We live in a culture of intense discrimination and stigmatisation against individuals and often families of kids with special needs; so it is not any parents’ first inclination to ‘expose’ their kids to other people including neighbours. BUT, it is very important that our neighbours not only know our kids, but are also aware of their diagnosis because in most cases these people can be our kids’ lifeline in the event of an emergency. In a recent wandering case where some estate gatemen were queried for allowing a young non-verbal adult with autism wander past the gate, they rightfully countered they did not know he had a special need. If they had known prior, they would have stopped him and reached someone from the house on sighting him walking by. I heard a speaker once say she took all the kids at her centre to introduce them to the police station nearest to them and also took the time to educate them on their uniqueness and challenges so they are better prepared to help them if the need arises and I thought it was something worthy of emulation. Unfortunately we have had reports that our prisons are filled with individuals with autism with limited or no speech who can’t explain who they are or where their families are and are just languishing in jails.
3. SWIMMING LESSONS
Research shows that the vast majority of children with ASD who wander are drawn to and go directly to bodies of water so, it is imperative that they are taught how to swim for their own safety. I am hopeful that we would have more people in-country trained to offer swimming lessons tailored to children with special needs. It is also very important that they are taught how to swim with their clothes and shoes on too.
4. ONE-ON-ONE SUPERVISION
This is especially important for when you are at large events like parties or busy places such as airports, beaches etc. it is recommended that you have an adult or two assigned to watch the child at ALL times. It is not a guarantee though as I learnt at a family outing at the beach, where with at least three people including my husband and I watching my son, he wandered away from us. We had all looked away for JUST a second for something and next I heard the dreaded question “where is Bubu?” he was nowhere to be seen. We all started looking around in a panic and someone sighted him gleefully skipping along the beach, enjoying the breeze, very far from us. How he disappeared from 3 watchful eyes in a heartbeat we would never know but, thankfully, because we had those eyes assigned to watch him, we were able to note very quickly that he was gone before he got any further.
5. GPS TRACKING DEVICES
In January this year, US Senator Charles Schumer announced a new legislation called ‘Avonte’s Law’ that will look to compel their government to start and fund programs to provide voluntary tracking devices for families of children with ASD. This law was named after a 14year old boy, Avonte Oquerdo who wandered from his school in October last year; his body tragically was found in a river in January, about four months after he went missing. The global autism community was hit badly by this case and it became a catalyst for the community to address the dangers of autism related wandering globally. In the US, it is hoped that the law will help prevent future tragedies and help put parents at ease. Our tragedy is that we do not as yet have federally funded programs to support families with children with special needs as is existent in all civilised countries but, there are companies that manufacture and sell tracking devices for children which can be purchased by families who can afford them. The devices can be worn as wristwatches or anklets and can be clipped onto belt loops or shoe laces and can be tracked on any smartphone or device with Wi-Fi. Some currently in the market include
1. Amber Alert GPS – www.amberalertgps.com
2. Pocket Finder People GPS www.pocketfinder.com
3. FiLip – www.myfilip.com
4. Trax – www.traxfamily.com
5. BeLuvv Guardian Child – www.beluvv.com
6. Secure GPS ezoom – www.securusgps.com/ezoom.aspx
7. BiKN – www.bikn.com
8. Triloc – www.ilotech.com
9. Geochild – www.geochild.com/en_GB
10. Childtrack 247 – www.childtrack247.com * there is a need for Nigeria specific devices
6. AN ID BRACELET OR LABEL
These will typically include your name, telephone numbers and other important information, it can specify your child has autism and is non-verbal, if applicable. This is addordable and can be homemade or purchased. See http://www.namebubbles.com/Labels-By-Use/Alert-Labels/Autism-Alert-Labels/Product.aspx?ProductID=30&DeptID=16
Please be prepared to adopt a multi-layered approach of supervision, security, survival skills and safe guards as there is no fail-proof method. Ideally, underlying causes of wandering behaviours should be identified and addressed. Never let your guard down even with all the modern tracking tools remember from my experience that more eyes do not equal protection; it takes just a second for a child to slip away. Do not allow independence to over shadow safety. More importantly, teach safety skills, danger awareness, self-help skills (learning to cross a road), self-regulation and survival skills. Do not assume your child dislikes all forms of water, they may hate bath times or pools but many perceive large bodies of water differently. It is important that every family has an “emergency wandering plan” with all relevant bio information and emergency numbers that hopefully you will never get to use. In conclusion, while the issue of autism related wandering is a serious global concern, with appropriate precaution and education, we can significantly reduce the risk.
Material collated from www.awaare.org