A friend recently posted on Facebook about a scare she had when she could not find her daughter. It was a case of a lost autistic child.
“Find her daughter” is putting it lightly; her autistic 6 year old had actually disappeared. Turns out hours later, she had followed some kids home and being non-verbal had sat quietly as they all played until the mother of the other kids came home and asked,’ whose child is this?’
Her post elicited a few dozen comments from parents who know someone or have had the experience of ‘losing their child’. “Lose” makes it sound like it is something you have misplaced – and not the frantic desperate occurrence of a child disappearing. We also use the word “lose” to describe a death and unfortunately in some cases where children have disappeared, it has ended tragically.
The Risk of Flight
Autistic children and some adults can be what we call “at risk of flight.” You turn your head – for half a second literally – and the child is gone…lost autistic child.
In January, my then 8 year old did a Houdini on me. On my Facebook wall I did post the incident; but only after I had calmed down and could let go of my son’s hand long enough to write. I posted this:
“So my son took his first ride in a police car yesterday. I can write about it now because 24 hours have gone by and I am not bursting out in tears at the very thought of it. No, the police did not arrest him…. although maybe he should have been even though he is just 8. With the Lord answering my prayers about him comes new reasons to pray still…
I was resting – (read making dinner) when I was startled by loud banging at my gate and was met by a panicky house help and the sight of the police and a neighbor.
Where is your kid?
The police man asked where my kid was and that’s when my son got off the police car, took one look at my face and edged himself past my trembling body and into the house.
Turns out my son had walked out of the main gate (I live in a gated community), past a guard who I later discovered had alcohol on his breath, and proceeded to run down a murram road and towards Mombasa Road.
Now if you know how fast cars drive down Mombasa road, you will understand why I needed 24 hours before I could write.
My Neighbor, saw him as he got to the junction, tried to stop him while causing 3 other drivers to break their cars behind her. She flagged down the police who were on patrol (forever thankful for the neighbor and the police), and together caught up with him before he could get onto the road.
The police together with my neighbor brought him home. In my neighbor’s words, it was better for my boy to ride in the police car lest she be accused of abducting my boy. The idea of an autistic non-verbal child on a busy highway…*shudder*.
I guess the only place my son could have been going to was his grandparents and it would be all right if a major national highway was not in his way and if the distance between our house and theirs wasn’t full of crazy drivers at high speed.
Goodbye to the maid
The maid who was supposed to be watching him as he played? FIRED. Instantly.
Drunk guard? He had an excuse about how he tried to call my son back… yeah you can roll your eyes with me. I hope wherever he is, he is more vigilant in his work and that more children have not disappeared while he’s on duty.
My son? – Well…. I know beyond a shadow of a doubt that God’s eyes never leave him. He is the beloved of the Lord and has a purpose to fulfill for the glory of God in his generation. ~ Thankful.
Also read: “My son is excited to be amongst people but people are not quite so excited to be around him.”
P.s if you have wanted to ask me what it is like, here is my answer – Autism is hard.”
Do I worry today that my son may disappear? I do sometimes, but I am thankful that his flight reflex has become less and I do not worry so much anymore.
What did I do immediately after he came home?
Did a lot of talking…
I was tempted to beat the living daylights out of him but instead did a lot of talking about how worried I had been, how I loved him and how broken hearted I would be if he ran away again…I was crying mid speeches and between his wiping my tears and crying a little himself, I think we understood each other.
What should we all do to minimize and mitigate flight risk for our autistic children?
Create a social story and use it for the flight situation until you are sure the message has been internalized. A social story is a short description of a particular situation, event or activity, which includes specific information about what to expect in that situation and why.
Inform your neighbors, security where you live, shops along the path to your home …anyone really, that your child is a flight risk and if seen alone or in the company of anyone other than your designated caretaker, you should be alerted.
Make sure your neighbors understand that the strict rules you are asking to be implemented are not just for the sake of it. Also be clear about your child’s disability.
Make sure your child’s school and your church or place of worship knows…Additionally, Make sure you mention it at restaurants and supermarkets if you are there with your child.
Over the years I have found that other people are generally very helpful if they know what you need…and in this case you need others also watching your kid just incase you turn away for half a second.
Make sure the POLICE know! In the west, kids who are flight risk and most children with autism are registered with the police…their photo, guardian details and where they live. This is updated each year.
Find out what helps in your set up. This helps in case your child goes missing.
Teach your child to swim. Most children who disappear are at times found near a water body or drowned. Kids love water so a lost autistic child going towards a pool or water body to play can be dangerous if they lack knowledge on water safety.
Yes even kids with autism can swim.
Find your child an ID of sorts that he/she can have it constantly… a bracelet, tags on his clothing… especially if he/she is non verbal. If he/she is verbal, teach the child to memorize your name and phone number.
Fire the inattentive maid. Yes, I know special needs can make for a very desperate domestic help situation but an inattentive maid will reward you with a lost autistic child. And this will cost you more than the housework she does.
You are better off with a maid with a hawk-eye whose cleaning skills are wanting, than a super cleaner whose idea of watching your child is gossiping with other domestic workers.
Finally – pray. I have found that prayers for the safety of my child have kept him safe even when I am not the one with him.
Jaki Mathaga is mom to a 10 year old boy on the Autism Spectrum. She heads a Corporate Non-Profit Organization by day and uses the balance of her time doing advocacy for autism. She is an Autism champion at the Kenya Autism Alliance, a parent-led and managed network of Kenyan parents of Autistic Children, Professionals in the Autism field and Caregivers of Autistic children. Twitter @Kenya_Autism
Jaki is also a Fellow of the Vital Voices Leadership Program. An organization that supports women leaders worldwide. firstname.lastname@example.org