The Silent Battle: Caregiver Mental Health in the Realm of Autism

In the quiet corners of countless homes, a silent battle is being waged every single day. It’s not fought with weapons or on a battlefield. It’s fought within the hearts and minds of caregivers for those with profound autism and intellectual and developmental disabilities (ID/DD).

The mental health challenges these caregivers face are often overlooked. However, some studies say they’re as intense and real as those that war veterans or caregivers for terminally ill children face.

The Unexpected Battlefield

Post-traumatic stress disorder (PTSD) symptoms are increasingly common for mothers of children with autism. Some researchers have compared the stress profiles to those of combat veterans.

That might seem shocking until you consider the constant stress these mothers face daily.

Unpredictable behaviors, communication barriers, and overwhelming needs are associated with profound autism. They can trigger a constant state of high alert.

Some compare those maternal cortisol levels to hypervigilance of a soldier on the battlefield. It’s a feeling of always on guard, always ready for the unexpected. Over time, this sustained state of stress can lead to PTSD. It manifests as intrusive thoughts or emotional numbness. Some people feel the need to avoid situations that remind them of traumatic experiences.

Stress Can Be Debilitating

Parents and caregivers of children with profound autism and ID/DD also share another similarity. Their mental health profiles can reflect higher levels of strain than those with parents of children with other disabilities. These caregivers experience chronic sorrow, anxiety, depression, and stress. It can be debilitating.

Some studies link these overwhelming feelings to caring for a child with a terminal illness. This comparison isn’t meant to equate autism with terminal illness. Instead, it highlights the significant emotional burden some caregivers carry. They grieve for the typical life their child might have had. They worry incessantly about their child’s future. They grapple with feelings of helplessness and exhaustion.

Understanding the Differences

It’s important to note that there are differences between DD (developmental disabilities), IDD (intellectual and developmental disabilities), and autism. While autism can be classified as a DD or an IDD, not all DD/IDD diagnoses are autism. Autism is characterized by social interaction difficulties, communication challenges, and a tendency to engage in repetitive behaviors. However, the severity of these symptoms can vary greatly from one person to another. Autism exists on a spectrum, and it’s different for every child.

Recognizing Caregiver Burnout

The first step to providing better support is recognizing the burnout caregivers can face. Mental health professionals, friends, and family are starting to acknowledge the emotional war some caregivers fight.

Some caregivers find support through resources like respite care, peer support groups, and counseling. Some providers offer stress management strategies, and researchers are trying to better understand caregiver PTSD to come up with more effective interventions.

Recognizing burnout and offering resources and relief are part of supporting the autism community. The silent battle these caregivers face doesn’t have to be one they face alone. The road ahead may be long, but with increased awareness and support, together, we can make it a little less daunting for those who tread it every day.

8 Tips for Planning for a Successful Holiday for Your Autistic Child

The holidays are an exciting time as we share traditions, spend time with family, and navigate the different gatherings and celebrations. Holiday spirit can also bring holiday stress. We want to help you and your family have the most successful (and least stressful) season by offering our best practices and tips.


Start with Expectations

Having a positive and realistic mindset about what you want to create can make a big difference. What could go right this season? Keep an optimistic view of the possibilities for special moments you want to share. A winning holiday doesn’t have to mean extravagant plans. Consider what would be ideal, be prepared to accept when flexibility is needed, and look for the wins along the way.

Consider Comfort and Safety Needs

When visiting events or other homes, bring items you know will bring comfort for your child—things like earplugs (or headphones), fidgets, and soft clothes. When traveling, ask for needed accommodations from your airline and hotel. Make sure you are aware of possible water nearby and review crisis plans with loved ones.

Practice Before Events

Now is a great time to discuss upcoming changes to schedules and routines. Involve your child in the process whenever possible. Playing memory games with photos of those you will see this holiday season allows your child to identify matching names and faces. Establish a phrase or code word with your child to practice using when they need to take a break from events to calm down and relax.


Maintain Routines

During the holidays, change is inevitable but find ways to create or maintain routines for your child. What are things you can build into every day? Perhaps it’s something you do together each morning, afternoon, and evening (regardless of location). Utilizing visual supports like calendars and independent activity schedules can be helpful too.

Build in Fun!

Whether days are filled with errands or time at home, consider letting your child choose a couple of activities each morning for the day ahead. Here are some suggestions that might work for your family:

  • Bake something together
  • Do holiday arts and crafts
  • Take a drive to see holiday lights in your neighborhood, zoo, or garden
  • Help with decorations or gift wrapping
  • Sing along with holiday music

Consider Sensory Needs

Holiday meals can be tricky for some. Plan ahead for alternative foods that you know your child will eat. As we mentioned earlier, being mindful of dressing in (or packing extra) comfortable clothing can be helpful. Preferred items, such as toys or other objects that help promote calm for your child, are a good idea too. Consider making a sensory box that includes things to stimulate your child’s touch/sight/sound/taste/smell. Finally, establish a quiet “break space” that your child can utilize when needed.


Plan for Rest and Recovery

After each scheduled big event or outing, try to allow time for a quiet evening that follows. Start a list or document on your computer of things that went well that you want to repeat and ideas about what would make it easier next time.

Transition Back to School

Packing holiday decorations and unpacking clothes can be helpful signals to your child that things are moving back to the normal routine. Other visual cues like a countdown calendar for back to school can help prepare them. Show them when school starts and have them mark off the days. Leave extra time the first morning back to school so you can have a nice breakfast and move with ease into the day. If possible, organize a nice, calm activity after school and focus on what went well at the end of the day.