As autism parents, we often do our best to focus on the positive aspects of raising a child with special needs. We follow various Facebook and Instagram accounts, connect with other parents and do our utmost to be the best advocates we can be.
While it’s not pleasant, we do have to think about the troublesome and even frightening aspects that come along with raising a child with special needs.
Over the past few months, I’ve interviewed various autism parents about what they fear most. So many had the exact same responses while others surprised me.
Here are some of the greatest fears revealed by autism parents.
What Will Happen to My Child After I Die?
This was the number one fear mentioned to me by autism parents. Many asked the same question: “Who will take care of my autistic child after I pass away? Relatives? A group home? Many don’t have answers.
“My husband passed away last year and my son, Cliff, and I are now alone. He is 32, non-verbal and requires round-the-clock care and supervision. I’m getting older and I have medical issues that prevent me from doing physical labor. Caring for Cliff has become increasingly difficult. We don’t have any close relatives in our town and he is on a waitlist to enter an assisted living facility. Lord only knows when or if he will be accepted. What will become of him when I pass on? Who will take care of him? This is what keeps me awake at night.” – Laura
“I’m going to be dead one day, my husband too, and Tyler is still going to be in this world. I need to have the reassurance and peace of mind that he will be taken care of after we are gone. It’s a very frightening thought, but I’m grateful for his sister, Lana. We are currently in the process of taking legal action to ensure that when we pass on, his sister will become his legal guardian. I’m aware that many are not as fortunate. I am grateful she is willing and able to take on this huge responsibility.” -Carol
Some adults with autism learn to function well in society. They are able to earn degrees, maintain gainful employment and live on their own. Others never develop the communication and self-help skills necessary to live independently and this is another one of the top fears amongst autism parents.
“My son will be 21 this year, he isn’t in school and doesn’t hold a job. His social and communication skills are poor and I believe this is what holds him back. I have tried to encourage him to attend adult day programs and I’ve even spoken to the manager at our local grocery store as he is capable of bagging groceries or moving shopping carts, but he refuses. I don’t know where to turn, I’m very scared for his future.” – Mona
“My daughter is aging out of her day program and literally has no future in sight at the moment. Our town has little to no support or services for adults with autism, what is she going to do? I can’t stay home with her, I have to work. Doing everything I can to plan ahead but with the limited resources offered, I’m at a total loss.” -Julia
For kids on the autism spectrum and their families, puberty can be particularly challenging time. While a child’s behaviour may improve during elementary school years, it can deteriorate with the physical and hormonal changes that come with adolescence. This is worrisome for many autism parents, particularly to those with children with limited or no verbal ability.
“My daughter is only 7 years old, but I’m TERRIFIED of the day she gets her first period. Will she understand how to care for herself? Will she be able to properly keep herself clean? What if she’s at school or out somewhere when it happens? Who do I consult when the time comes? So many questions and no answers.” -Sima
“I can already see the changes happening in my son, puberty is emerging, slowly but surely. The mood swings are definite signs that it’s starting. Do I discuss puberty with him? How do I explain it so he properly understands? My one worry relates to his sexual development. Will he know and understand that there are social boundaries? Will he act inappropriately if he’s sexually excited or will he contain himself? This is all very hard to swallow, but it’s reality.” -Anonymous
Following the tragic news story about a woman who died in her kitchen while with her then five year-old autistic son, who was found next to her body and was unable to call for help, had many autism parents horrified.
What if you were alone at home, in the car or in a public space with your child and you had a medical emergency or an accident? In many cases, our children would not have the wherewithal to dial 9-1-1 (or your local emergency phone number) or ask someone nearby for help.
“I have Type 1 diabetes and I was recently diagnosed with angina. I know I need to make a some lifestyle changes but it’s not easy. I have thought of worst-case scenarios when I’m alone with my 13-year-old. He’s a smart kiddo, and I’ve discussed what he must do in an emergency, but truthfully, I don’t know what he would do. I hope we are never faced with such a situation.” -Carl
Lack of Self-Advocacy
As your family member with autism ages, he or she will need to learn how to assess problems, speak up and ask for what they need, know their rights and how to negotiate. Some individuals with autism can verbally communicate their goals and desires while others may have significant difficulty doing so. Many parents fear that their children will never be able to attain these vital life skills.
“I have witnessed other children bully my son on more than one occasion and it breaks my heart. He stands there without saying a word while being verbally abused by snot-faced buggers. I just wish he could stand up to them, but he doesn’t. I shudder to think about what happens when I’m not around. I know he isn’t telling his teachers about the bullies. It’s all very sad.” -Ramona
“A boy in my son’s class hit him, completely unprovoked. I learnt that my son cried but didn’t speak up or retaliate. Fortunately his teacher witnessed the entire incident, but what if she hadn’t been there? The violent act against him could have been a regular occurrence and I would have been none-the-wiser. I want to protect my child and I want him to feel safe. The fact that he doesn’t have the ability to tell me, or his teachers when he’s being bullied is gut-wrenching.” -Jason
On a recent excursion to the science centre, my son decided to run ahead of me down a long corridor, turned a corner and was temporarily out of sight. Although I was able to catch up to him, that brief moment brought on feelings of panic and fear. What if I had lost him? Although I don’t like to underestimate my son and his abilities, I’m quite certain he wouldn’t have asked for help. A terrifying thought.
There have been some horrific stories about autistic children separating from their parents, most recently the tragic story of 6-year-old Maddox Ritch. While these cases are few and far between, they are a reality. As parents, we have to take every precaution possible to avoid these scenarios.
“The day I lost my son at the park was quite literally the worst day of my life. He was found at a laundry-mat two blocks away, jumping and stimming watching the dryers spin. I’ll never forgive myself and it’s still very difficult for me to tell this story. I’ve never felt like less of a mother to my child.” -Priya
Lack of Safety Awareness
All parents have safety concerns when it comes to their children. But many individuals with autism do not appear to have a safety ‘antenna’ built in, and their sensory processing does not effectively work to help them in the area of safety and crisis prevention.
When asked, many adults on the spectrum have strong feelings about safety and what they endured as children and teens. These challenges prevented them from feeling when something was too hot or too cold, an object was very sharp, or from “seeing” that it was too far to jump from the top of a jungle gym to the ground below. Even if they learn safety rules such as ‘Look both ways before crossing the street,’ or ‘Do not cross the street without an adult,’ their sensory processing challenges put them in danger because all they may see is the beautiful yellow line in the middle of the road or a bright neon sign on the other side and may run to touch it.
“While on vacation we were swimming at the hotel pool as a family. My daughter didn’t use any caution whatsoever while walking around the swimming pool, it’s as if she didn’t notice it right in front of her. She fell right into the deep end and sunk down to the bottom. I’ve never seen my husband swim so fast. He pulled her out of the water and she was thrashing around in hysterics. Not only did it cause a scene, but she refused to go near the pool for the duration of our trip.” -Mary-Anne
“I’ve told my son on countless occasions that he is not to run in a parking lot and must stay by my side at all times. He is quite hyper and is constantly moving and running around. One day he got out of the car and ran in the parking lot, narrowly missing an oncoming vehicle. He didn’t attempt to move out of the way, nor did he seem frightened after the fact.” -Alex
Have you a fear that wasn’t mentioned above? Or one you would like to share? Feel free to post in the comments below.