The outbreak of COVID-19 has been difficult enough, commanding a new way of life for a disease that seemingly sprouted up overnight. For the approximate 1 in 54 U.S. children that live with autism, it’s been an entirely different experience — fraught with added confusion, anxiety and fear. In general, death is a hard subject for any child to cope with, and even harder to process for those with autism. As loved ones are lost, routines have changed and “normal” has morphed, kids with autism struggle to understand a world that’s suddenly so different and no longer feels safe.
A recent online survey of parents, the “Psychosocial and Behavioral Impact of COVID-19 in Autism Spectrum Disorder,” shows that COVID-19 has created challenges for an overwhelming 93.9% of families. From work and school to our finances, and even the cost of our home insurance, the COVID pandemic has changed every facet of how we live our lives.
“The pandemic has exponentially affected those on the autism spectrum, as well as the families, guardians, and caregivers of special needs populations,” agrees Dr. Karen Aronian, Ed.D., of Aronian Education Design LLC.
As the aunt of a child with autism, Dr. Stacy Haynes has seen these impacts first-hand with her own family. “I have seen my sister and other parents struggle with being the teachers or additional academic support for their child at home. Parents need educational supports to help their children at home, same as if they were in the classroom,” she says. “Parents with autistic children are finding it hard to balance work and school during the day.”
The impact of COVID-19
A huge part of these difficulties come from the fact that critical support systems are changed or no longer in place.
Jennifer Hanawalt, LP, Ph.D., a Clinical Psychologist at Birmingham Maple Clinic, explains; “The pandemic has significantly limited the support network, community resources, daily activities, therapeutic resources and social and educational opportunities available to many individuals and families living with autism.”
“Social skills groups, speech therapy and interaction with peer volunteers at school have either paused or moved to online platforms, significantly reducing opportunities to practice and learn new communication skills. Many community, school and therapeutic programs have been suspended or moved to a virtual format, which can be particularly difficult for individuals with autism to access or participate meaningfully in,” explains Dr. Hanawalt. “Even when school is offered virtually, students with autism do not have paraprofessionals or teachers sitting with them offering hand over hand or other important supports.”
This impacts families in different ways.
Mask mandates have been one issue of contention for children with autism, says Marissa LaBuz. She is a school-based pediatric occupational therapist that works with children who have autism and maintains Teachinglittles.com, where she teaches parents and caregivers how to teach their little ones through play.
“Since children with autism already have a difficult time reading social cues from other’s faces and participating in reciprocal verbal communication, wearing a mask can be a terrible setback for any gains that they have previously made,” she explains. “Wearing a mask can affect both their ability to see and understand other’s facial expressions, as well as communicate themselves. They may feel as though they’re being forced not to speak since there’s fabric covering their mouths.”
Many children with autism are non-verbal, which means that they may have a significantly more difficult time expressing themselves in an uncertain world. It’s something Dr. Hanawalt sees regularly at Birmingham Maple Clinic.
“The pandemic has, for many children with autism, limited or completely paused in-person interaction with peers and any interaction partners outside of their families,” she explains. “Many individuals with autism struggle with the nuances of communication and must work extra hard to take in and process the various components of a social interaction or communication.”
The virtual world can be intimidating, too. “Many components of interaction are missed in virtual or telephone communications, such as eye contact, body language, and less audible sighs or grunts,” says Dr. Hanawalt. “The ways we greet others, for example, handshakes to waves, even whether it is appropriate to greet others verbally in public have all shifted during the pandemic. This is particularly challenging for those who work extra hard to understand social norms and practice communication skills to begin with.”
As the founder of You From Home, Chris Reavis brings a unique perspective to the matter as an adult with autism, the parent of a child with autism, and a professional who serves clients with autistic kids. He says COVID has significantly altered the way he and his family communicates.
“Overall, by remembering how my child’s brain works and meeting them where they are at, we’ve had a lot of success during COVID,” he says. “This includes remembering to primarily use hands-on and visual learning styles (not auditory). I use a lot of empathy with my son, realizing that he may be in a fight or flight state, and one has to start with this before sharing adult concerns and brainstorming solutions.”
The fight or flight state has its roots in feelings of fear and anxiety, something that’s all too common during the pandemic. It’s one reason parents should pay particular attention to reinforcing feelings of safety and security during COVID.
The pandemic has taken a severe emotional toll on children with autism, who are not so easily able to process such regular and extreme changes to their regular day-to-day lives.
“Individuals with autism often feel safer and more secure in familiar settings and in the context of a set routine,” says Dr. Hanawalt. “Routines changed significantly at the beginning of the pandemic, and have continued to shift with various restrictions, openings, precautions adjusting to numbers of cases and changes in understanding of the virus.”
She cites several pandemic-induced changes, such as school, work, community transportation schedules, community programs, and store hours. “Social restrictions have changed throughout the pandemic. Schools and jobs have switched from virtual to hybrid, to full-day and back and forth. Teachers, therapists, care locations and transportation workers, for example, may have changed as a result of and multiple times during the pandemic. These changes have been stressful for most people, but perhaps especially for individuals living with autism.”
“I find many of my children are relieved of not having the social stress of school, and many enjoy being at home for school,” says Dr. Stacy Haynes, Ed.D., LPC, ACS, therapist for Little Hands Family Services and the proud aunt of an autistic nephew. “Some of my autistic patients have shown an increase in anxiety and difficulty sleeping since the pandemic has started. I have found myself doing a lot more collaborative and proactive solutions – an evidence-based problem-solving approach by Dr. Ross Greene – with children and their parents around anxiety.”
There are other things you can do to help as a parent or caregiver of an autistic child.
Keep a schedule
Another challenge of the pandemic has been the severe disruption to ‘normal’ routines.
“Routines are especially important for children with autism as they rely on cues throughout their day to indicate what comes next and thrive on predictability and structure,” says LaBuz of Teachinglittles.com. “They may have found it terribly hard to understand their daily routine. They can feel as though their world has been turned upside down by the closures and change of their schedule.”
She recommends maintaining a consistent routine each day (as much as possible) so that your child knows what to expect. “It’s still important, even at home, to make them feel safe and give them the predictability of their day. Use a daily schedule or chart with only pictures or words depending on their age and functional level, so they always know what’s coming.”
Dr. Aronian agrees, adding the suggestion of a whiteboard or magnet-friendly schedule for the refrigerator door. “Just as teachers and therapists write and post a daily schedule on the board, parents should too. A regular schedule keeps children and their home in a consistent, accountable, forward motion routine of consistency.”
A routine can be especially important at a time when there is so much disruption to daily life at home. Parents may be officing out of their home, or going through a period of unemployment altogether, and professional support may be much harder to come by with social distancing and quarantine measures in place.
“Many job programs have been suspended,” says Dr. Hanawalt. “Respite and community living support caregivers, hired to assist those with autism, may have been unavailable or less available. Caregivers have had to increase direct support that is usually provided by teachers, outside caregivers and therapists in many cases. Individuals who usually engage in supported social and peer interactions have found themselves isolated.”
LaBuz sees it, too. “For caregivers of children or adults with autism, life has gotten much tougher without an outlet or place to send them. These children need to get out of the house to have new experiences, make new connections, and learn new things,” she says, impassioned.
It creates serious issues for some parents, who feel overwhelmed by the sudden dramatic changes to daily life. “Many parents are not equipped to handle these special needs on a daily basis, so they have been left with a huge burden,” explains LaBuz, “not only to educate their young ones but to manage all of their activities of daily living day-after-day. This can get especially daunting for caregivers, as these children have trouble expressing themselves in an appropriate way.”
Still, there are ways to reestablish the normalcy of days past and restore a greater sense of order to your household. Here are a few practical ways to accomplish this:
Maintain healthy hygiene habits.
KidsHealth encourages adults to establish a regular hygiene routine that includes frequently washing and sanitizing hands, maintaining social distance and using a mask or shield when in public. Hygiene routines associated with specific times of the day can be helpful as well.
A doctor visit in 2021 may be a little different than what you and your children are used to. Many professionals have converted to telehealth, digital check-ins and online therapy in an effort to stop the spread of the COVID-19 virus and keep patients and staff safe. Due to this, Dr. Aronian says internet therapy connectivity in the COVID age has now “become essential.”
She explains, “The advent of the open Zoom/Skype/Google rooms was now a gateway for parents and guardians to observe, learn, and facilitate how to administer best care therapies for their children. There’s been a seismic shift, wherein parents and guardians are now taking on the role of professionals, absorbing and mimicking their skill sets as co-therapists at home.”
In many ways, COVID has resulted in discovering and developing new and better tools for parents to make home a more comfortable place for the entire family — particularly when dealing with autism.
Go on outings
With schools closed, it’s more important than ever that children get time outdoors in the fresh air. It’s why U.K. directives allow children with autism to go outside three times a day compared to the daily allotment for others. The familiarity and openness of the outdoors can make kids with autism feel instantly reassured and distract them from other challenges with a little fun.
If the outdoors isn’t an option, consider what kinds of virtual adventures you and your child can embark on together. Many museums, zoos and other organizations have moved to a digital format, allowing their visitors a virtual option for their visit, instead.
Don’t forget about yourself
In all of the hubbub, it’s so critical that parents and caregivers don’t forget to take time out for themselves.
“Many caregivers are trying to balance their individual work and tasks along with increased responsibilities of monitoring remote learning and therapy or even providing direct and constant support,” explains Dr. Hanawalt. “Limited to no respite or break periods, lack of outside help and regular sources of social support have significantly increased stress on caregivers who were often pushed to their limits on good days before the pandemic.”
“Finding time for self-care, even if just at the very beginning or end of the day,” she says, “is essential to be able to manage pandemic stress and overwhelming responsibilities.”
There are many soothing, relaxing activities that parents and caregivers can enjoy to help unplug. These activities, says Dr. Hanawalt, “can all be soothing and offer stress release.”
- A phone or video call with a good friend
- Reading a great book
- Solving a puzzle
- Listening to a favorite album
- Taking a walk or going for a run
- Engaging in busywork, such as knitting, painting or coloring
“Caregivers need to take breaks and have some time to themselves if they’re caring for their child with autism every day,” says LaBuz. “Finding a relative, friend, or babysitter that can give you the time you need to unwind is very important to reduce burn out.”
Creating a space
With autism, it’s all too easy to feel overstimulated, so a sensory room can be the perfect solution to restore feelings of safety and security. These rooms not only improve their visual processing skills, but also reinforce auditory and tactile processing by providing a calming, relaxing atmosphere. In this space where they feel comfortable, children with autism can sort through their emotions and learn how to self-regulate their behavior.
“If you have the space, creating a sensory room or corner in your home can give a child with autism an outlet to burn off their energy or get the sensory input that they need throughout the day,” suggests LaBuz.
“Creating a sensory or activity space at home can provide an individual with autism with a defined, available and predictable area in which to seek shelter and engage in soothing or leisure activities,” says Dr. Hanawalt. “Carving out a dedicated space with preferred activities, organized so that they can be accessed and put away easily, can help to create order in the uncertain pandemic. Items found at home or that can be readily obtained can be substituted for expensive therapy equipment. Pillows on the floor, an office chair to spin in or a rocking or bouncing chair, an exercise ball, bubble wrap, playdough or homemade dough, are examples of items that may be useful.”
Dr. Aronian considers a sensory room a “requisite,” adding that, “setting up opportunities for learning, play, movement, and skill practice creates continued opportunities to extend progress.”
Consider the different senses when setting up your child’s room.
Avoid any fluorescent or flickering lights. Instead, LED or fiber optic lighting in warm and cool colors can create a more calming space. Some children particularly enjoy novelty lighting options, such as a star, galaxy or ocean projector.
Use calming, relaxing soundtracks or your child’s favorite album to create a positive, more enjoyable atmosphere. By swapping the jarring sounds of the outside world with happy, familiar tunes, your child can feel far more secure at home.
Use an air deodorizer or plug-in to perfume the air with soothing scents. Many scents have been known to trigger physical reactions, like lavender (relaxes), or lemon (calms and helps improve concentration).
LaBuz suggests providing both stimulating and relaxing items that your child enjoys. Consider items such as bean bag chairs, swings, trampolines, weighted blankets or massagers.
One of the biggest risks for a child with autism is if they wander off and become lost, unable to make their way home. Autismspeaks.org conducted a study that found 46% of children with autism are likely to wander off, compared to an 11% risk for the average child (ages 4-7). Of those who wandered off, nearly 24% experienced a near-drowning and 65% had a close call with a traffic injury.
The digital revolution has given parents more options to help with this situation, with smart devices and tools that can track children and keep them safe.
A GPS tracker is an electronic device that can track your child and sounds an alarm when moved outside of a set location. Today, there are many models available that are comfortable for your child to wear, such as a bracelet or necklace.
Arming your home with indoor and outdoor security cameras will give you extra eyes around your entire home so you can ensure your child is kept safe. Many parents are also able to earn an extra discount on the cost of their homeowners insurance, thanks to these additional security protocols.
Door and window sensors will immediately ring an alarm when they are opened, letting you know if your child is on the move. These can also have security benefits, as well, keeping your home safe and secure when you are sleeping or not home.
Tech and apps
There are many apps designed to help children with autism communicate with the world around them, offering different functions and designs to support and improve your child’s motor and visual skills. Some are even equipped with an intervention mode to interject when necessary.
As a parent, Reavis offers a final word of advice on integrating technology into your household. “While technology can be regulating, transitions to and from technology often are more challenging. Generally, agreeing before on the time allowed and having a timer enforce this (not a parent), helps quite a bit.”
There is a whole world of support out available online, and experts encourage you to take advantage of the many resources designed to help.
“Caregivers may want to reach out to teachers and parent groups to find out about apps or websites that have been engaging or useful for their child (for example at school) or with other children who have similar needs and interests,” says Dr. Hanawalt. “There are online groups that provide a safe interaction experience, such as the pen pal program called e-Buddies through bestbuddies.org.”
These are some other organizations that can help.
|Type of Support||Organizations to Help|
|For friends and family||The Autism Research Institute provides a helpful handbook for friends and family of an autistic child.
The Autistic Self Advocacy Network is another excellent resource that explains in greater detail what autism is and how it affects children.
|Financial assistance for families with autism||Outreach Autism Services Network provides a list of available grants for financial assistance.
NeedyMeds offers a full listing of diagnosis-based assistance programs for autism.
|Resource to find smart devices||The Crisis Prevention Institute provides a helpful listing of over 65 apps for autism.
Autism Parenting Magazine has also tested and vetted the latest smart devices and apps for autism.
|Resources for sensory room items||Fun and Function specializes in sensory rooms and equipment for families with autism.
Enabling Devices is one example of a place to find sensory products for your home.