As the mom of a 53-year-old autistic son, I have special concerns regarding my son’s well-being during the current health crisis.
In my research, I have discovered that there are health risks linked to autism that we, as parents, need to consider especially given the ever-growing crisis in today’s world.
It has been advised that individuals with heart problems, lung problems and diabetes are statistically at higher risk for complications from the present world-wide virus.
This is why it’s especially important that we know all about caring for our autistic children in a crisis.
6 Health Risks Linked to Autism
Through recent research, we know autistic children and adults are prone to several health conditions such as heart problems, hypertension, anxiety, digestive disorders, diabetes and sleep disorders.
Coping with these health conditions, especially during a health crisis, is of paramount
importance for us as parents!
Health Risks and Autism: It’s Personal
My son, Joe, like so many other autistic people, has several serious health conditions that we have learned to cope with.
My son is in the 3rd stage of congestive heart failure, has hypertension, sleep apnea, diabetes and asthma all of which can be worsened by his anxiety.
The possibility of Joe experiencing complications of a virus, any virus, is a fact that I, as a mom, must always be cognizant.
3 Special Considerations for Autism Patients
There are several common characteristics of autism that can pose a problem in delivering health care to our autistic loved ones regardless of their age or where they are on the spectrum.
Characteristics such as:
- difficulty with verbal communication causing autistic patients to not be able to thoroughly describe or explain their symptoms;
- difficulty labeling feelings or sensory input causing autistic patients to not be able to pinpoint the source or location of pain or discomfort;
- difficulty developing new behavior patterns required for healthy living causing autistic patients to not easily develop the necessary behaviors for following a medication regimen or changing unsafe habits.
These characteristics of autism can become challenging in preventing, treating or minimizing health concerns and must be discussed with health care providers to enable effective health care.
Health Care Precautions for Today’s Health Crisis
Washing hands often and thoroughly, a main precaution against this virus, may or may not be in our children’s repertoire of behavior patterns and changing behaviors is not easy for autistic individuals as it takes them some time to develop a new behavior.
However, once the behavior is finally learned, it becomes part of their daily pattern and can become difficult to extinguish as it develops into perseveration.
After 40 years in education, I can’t believe I am saying this but right now, the autistic characteristic of perseverating on hand washing could be a good thing for our children as it can help to keep them healthy.
Helping My Son FEEL Safe in a Crisis
As a mom, keeping my son safe is vital but I also need to help Joe feel safe.
As a school psychologist, I usually turn to tried and true theories to help me in situations that are difficult for me as a mom.
So, in my desire to help Joe feel safe and ease his anxiety, I turned to one of my favorite theorists, Abraham Maslow and his Hierarchy of Human Needs.
4 Things I Learned to Help Joe FEEL Secure – Caring for Our Autistic Children in a Crisis
In Maslow’s Hierarchy of Human Needs, he states the practical and obvious needs of all human beings including of course our anxiety prone autistic children.
I have adapted 4 of Maslow’s 5 needs to the needs of our autistic children no matter what age, or where on the spectrum, they may be.
These are the same things that apply to caring for our autistic children in a crisis.
1. Satisfying Physical Needs (Food, Drink, Sleep and Medication)
Providing food, drink and sleep for our children is a given, but may be challenging at times as our autistic children may be picky eaters and have difficulty falling asleep.
Good nutrition and adequate sleep help keep our children healthy especially during a health crisis.
Like most of us, our special needs children may eat more than usual and require more sleep than usual when stressed.
Monitor this possible behavior to make sure it does not turn into stress eating or signs of depression as our autistic children may have difficulty expressing the level of their stress.
Considering Our Older Children
If our children are older and living somewhat independently, it is important that their food and drink supplies are monitored and adequate for their needs.
I love to go shopping with my autistic son, but that mutually beneficial experience is getting riskier by the day.
I believe this current crisis situation presents a wonderful opportunity to assure Joe that his input is still valuable but now he must give me a list of wants and needs.
Getting Adequate Sleep
Reading and/or quiet time is helpful to enable our young children to relax enough to fall asleep more easily.
As our children get older, they will choose activities that quiet themselves enabling them to fall asleep faster.
Joe seems to find a chess app on his iPad relaxing, enabling him to quiet his mind and body enough for sleep.
Many of our autistic children take medication whether they are younger or older.
Making sure our children have enough medication or supplies for health devices such as a CPAP is important to enable children’s medical care not be interrupted.
2. Safety Needs
Providing a safe environment for our children is important as people, including autistic children and adults prefer a safe, orderly, predictable, organized world.
While providing a completely safe environment is highly improbable, our children will more fervently than ever look to us for a sense of safety and well-being.
This sense of safety and well-being extends from the physical to the psychological as feeling safe is vitally important.
Our Younger Children
Parents of younger autistic children can provide an orderly environment with reasonable rules that are understandable and easy to follow.
Predictability helps our children feel safe, less stressed and less anxious so set routines are of major importance during a crisis.
Our Older Children
Our older autistic children living independently will need to determine ways to provide personal structures that make them feel safe.
Sometimes it is their house rules listed on the refrigerator, music or the TV on at night, closed drapes or blinds that help them feel more secure.
Joe feels safe knowing he is connected to others when he needs assistance.
Knowing that a parent or authority has a plan in case of an emergency is vital for a sense of safety for our autistic children, no matter what age they are.
For example, I have my iPad on 24/7 letting him know I am available to assist and he also has an updated contact list on his phone. Thank goodness for modern technology.
Whenever or wherever in the world there is an emergency situation, Joe and I discuss it and list possible solutions to the emergency as this gives Joe a sense of control over possible emergency situations.
The point is to help our children to feel safe and in control.
3. Love and Belonging Needs
Now more than ever, Saying “I love you” to our autistic children whether younger or older is one of the most important things we can do to express our caring to our children.
However, actions speak louder than words.
My aunt fostered a little 5 year old boy who was abused and neglected by his drug-addicted mother.
He was tiny for his age as he was routinely deprived of food by parents who were under the influence of drugs.
My aunt constantly said “I love you” to him every time she looked at him. He would just stare at her.
Due to being deprived of food earlier in his life, this little boy only felt safe when holding a box of cereal, all day long and all night long.
Unfortunately, when he fell asleep, his little arms fell off the cereal box causing him to awake and become frightened at losing his beloved box of cereal.
My aunt, realizing his fright, sat next to his bed every night for months holding his little arms around the box of cereal.
Every morning when he awoke, he saw my aunt sitting next to him holding his arms around his box of cereal.
That is love in action.
Love can be shown in a multitude of ways but providing what our children need to feel safe and cared for is arguably the most effective way to show love.
4. Self-Esteem Needs
Providing a sense of self-respect, self-esteem is important for our autistic children especially in a crisis situation as self-esteem is built on realistic capabilities, achievements, and earning the respect of others.
Helping our autistic children know what they are capable of doing and helping them to display those capabilities are vital to self-esteem and feeling safe in a crisis.
A major goal for parents is to assist our children in learning to physically and emotionally care properly for themselves.
Personal hygiene is a given but learning to cook, clean and budget are also vital components to caring for oneself and activities that can fill many a day with the children.
It is never too early to teach our children to care for themselves as caring for one’s self is the ultimate in feeling capable and safe.
Feeling capable leads to feelings of self-confidence, self-worth, strength, and adequacy of being useful and necessary in the world.
Our special needs children may start feeling anxious as their personal world is changing due to school closings or a parent working from home for the first time.
Helping Our Children Feel Safe While Keeping Them Safe
A world-wide health crisis can pose a special risk to our autistic children but we can and will rise to the challenge to help our children feel safe and thrive.
We can use this crisis situation as an opportunity to spend time with our children interacting with then in ways we rarely could previously.
One important thought for all of us parents, TAKE CARE OF YOURSELF.
Monitor yourself for signs of Caregiver Stress Syndrome caused by increased stress over extended periods of time.
Your children depend on you and look to you for guidance so in taking precautions and staying healthy you provide them with the best and most important form of role modeling available to them.
Please feel free to share with me any success stories you may have as you implement your family physical and emotional safety plan.
Carol is the mother of a 53 year old Autistic son and author of Against All Odds. She is an educator, school psychologist and parenting group facilitator. Carol has been in the field of education for almost 40 years.
She has had the opportunity to teach grades K-12, was a high school counselor and school psychologist and has specialized in working with at-risk children and adolescents.
Carol has facilitated groups at a local Orange County, California clinic where she worked with adolescents who had recently been released from juvenile hall, adults with anger issues, and parents who experienced custody difficulties during divorce proceedings or have lost their children to Social Services for a variety of reasons.
Carol presently teaches psychology at an Orange County, California college.
Carol is the author of two children’s books on differences: The Draco Twins Make a Discovery and The Draco Twins Turn Bullies into Buddies.