What You Should Know About Caring for an Autistic Person

The Center for Disease Control (CDC) estimates that approximately 1 of 44 people are autistic. This estimate has gone up in recent years due to increased understanding of autism and improved detection and diagnosing. Because neurodevelopmental diagnoses are lifelong, autistic people are born this way and do not develop autism later in life. As such, a high number of parents are raising autistic children.

People are generally assumed to be neurotypical unless otherwise specified. As such, many parenting resources emphasize what works for neurotypical children and most parents expect their children to be neurotypical.

This can lead to challenges and stressors when raising autistic children. This article provides caregivers information about autism and how to support your autistic loved one. An autistic person also shares their story.

Recognizing Autism

The Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5), conceptualizes autism as a spectrum.

The current diagnostic criteria for autism are:

“Persistent deficits in social communication and social interaction across multiple contexts,” including:

“Restricted, repetitive patterns of behavior, interests, or activities,” including: 

Other criteria include:

It is important to be aware that the current diagnostic criteria and evaluations for autism typically exclude presentation that is commonly seen in girls. Autistic girls often mask their social differences, and their special interests might be miscategorized as simply “liking girly things.”

Additionally, in the United States, white autistic children are more likely than Black autistic children to be diagnosed and receive appropriate accommodations, support, and services.This is a small component of systemic issues and poorer healthcare outcomes for Black Americans compared to white Americans.

If you notice these differences in your child, your pediatrician is a great resource for determining next steps. They can provide you with referral information for an evaluation as well as information about development and signs that your child could benefit from additional support. The Aspergers/Autism Network has a diagnostician directory with resources as well.

What to Do as a Caregiver

Because autistic people can struggle with communication, forming relationships, and overstimulation, they may require support from their loved ones. Many autistic people experience trauma symptoms as a result of the stress of existing in a world designed for neurotypical people, which may manifest as self-medication and substance use.

Additionally, many autistic people experience medical problems, particularly gastrointestinal issues, that may require treatment.

Identify Their Specific Individualized Needs

Caregivers can support autistic people by helping them identify their sensory, dietary, and emotional needs and find resources to meet these needs appropriately. The needs, goals, and desires of the autistic person should be given top priority when determining what services are the best fit.

For caregivers of young children who might not be developmentally able to articulate a preference, listening to the autistic community is essential in determining appropriate care.

Ways that you can identify an autistic person's specific needs include:

• Many autistic people struggle with verbal communication. Encourage other methods of communication (writing, body language, sign language) and use these alternatives to ask their preferences.
• Notice what is usually happening right before a meltdown to identify sensory triggers, and help them avoid those situations.
• When the autistic person indicates that they are becoming overstimulated, listen to them. Often, autistic individuals (especially children) will indicate that they need a break or need additional support, and the meltdown occurs when this communication is not met with appropriate support.

Look for Signs of Burnout

Caregivers should also be aware of symptoms of autistic burnout. Although anyone can experience burnout, due to masking and surviving in a world that is not designed to meet their needs, autistic people are at high risk for burnout. They might experience functional deficits and the inability to continue masking or thriving when they reach the point of burnout.

Burnout symptoms can vary by individual. However, common symptoms of autistic burnout include:

• Chronic exhaustion
• Loss of coping and functional skills
• Reduced tolerance to sensory stimuli
• Emerging or increasing medical symptoms
• Emerging or increasing mental health symptoms
• Suicidal ideation

Caregivers should make an effort to recognize when this is occurring and offer appropriate support. If an autistic loved one is experiencing burnout, you can help them in the following ways:

• Empathize with them. Express that their burnout symptoms must be difficult, and let them know that you believe them when they say they cannot do something.
• Reduce expectations. Understand that someone experiencing autistic burnout is not choosing to have difficulty with tasks that they have previously done, and allow them to take breaks. If a task is not absolutely essential, let the autistic person determine which tasks they have the energy to complete.
• Encourage breaks. Help them get time off from work, school, or other projects so that they can rest and recover from their burnout.
• Provide a safe space. Create an environment that meets their sensory needs.

What to Avoid as a Caregiver

Many providers will recommend ABA (Applied Behavioral Analysis) therapy for autistic individuals. However, many autistic people who experienced ABA describe the experience as stressful, traumatic, or even abusive.

It can be tempting to push your loved one to behave or interact in a neurotypical way. Consider what their needs are and why they might be engaging in a specific behavior.

If the behavior is not harmful or dangerous, consider why you want to change or eliminate the behavior. Does it annoy you? It might help to explore your own sensory needs and find ways that you can both get your sensory needs met without asking the autistic person to change the behavior. Does it embarrass you?

How to Talk to Your Loved One About Autism

Because there is still a lot of stigma around autism, this can be a difficult topic to bring up with your loved one.

Notice how you talk about neurodiversity, and make a point of using non-stigmatizing language in your daily life.

If your child is diagnosed, share their diagnosis with them so that it is not a secret or something that was kept from them.

Although language may vary based on developmental level, children are never too young to be given information about their diagnosis.

Things to Keep in Mind If You're a Caregiver

Although the causes of autism are not fully understood, there is evidence that genetics impact whether or not someone is autistic.

If your biological child is autistic, you might want to get tested as well. Autistic adults are often not diagnosed until later in life.

Take Care of Yourself

Because autistic children have different needs, and many parenting resources emphasize the needs of neurotypical children, parents of autistic children might experience stress and additional challenges in finding support. Having good self-care skills in place can help with this.

Here are a few self-care activities you can try:

• Have hobbies and interests outside of your role as a caregiver, and make time to explore these interests.
• Consider seeking support from other caregivers of autistic people. The Asperger/Autism Network has information about caregiver support groups.
• Respite care is short-term care that gives primary caregivers a break. No matter how much you love someone, it can be beneficial and healthy to have time to yourself when you know that your loved one is in capable hands.

Only Use Reliable Sources to Gather Information

Parents should also be mindful of the resources that they utilize. The Aspergers / Autism Network is run by community members and includes information for loved ones of autistic individuals. The Autistic Women & Nonbinary Network is another organization run by the autistic community with free resources available.

Listening to the autistic community about best practices for care and supportive resources that are helpful rather than harmful is essential in supporting an autistic loved one.

Patient Story: Courtney

Courtney was not identified as autistic until she was an adult, but her mother met her needs and supported her despite not having an official name for how she was “different” from many of her peers.

A loving, supportive, and accepting parent makes all the difference to an autistic child.

Social media was a huge factor in Courtney realizing that she was autistic. She read posts from other autistic adults, educators, and activists including Erika Heidewald, @erikaheidewald on Twitter) and Natasha Nelson (@SupernovaMomma on Twitter) and realized that her experiences with emotions, learning difficulties, and interpersonal relationships were consistent with autism.

Courtney said it is important for non-autistic people to know that autistic people have different experiences than neurotypical experiences, and these differences need to be honored and respected. She also wants others to understand that autistic people matter and deserve to be here too.

A Word From Verywell

If someone in your care is displaying behaviors that could be consistent with autism, it can be a worthwhile experience to explore testing to determine whether they are autistic. The evaluation could show that they have another diagnosis, such as ADHD, OCD, anxiety, or a learning disorder and could benefit from treatment.

“Best practices” for “treating” autism have changed. Previous research has emphasized teaching autistic people to “act” neurotypical, but we now know that forcing autistic people to mask can lead to burnout. Listen to your loved one when they express their needs and preferences, and listen to community voices when deciding the best action to take for your loved one.