Parent & Caregiver Guide to Driving With a Child Who Has a Disability

Traveling can be challenging for any family, but traveling with children who have autism spectrum disorder and other disabilities can present unique challenges. Travel can also bring joy to kids with disabilities and enable families to have memorable experiences and connections with loved ones.

Parenting children who have disabilities can be complex and costly, but that doesn't mean families need to miss out on travel. Experts and parents encourage families to approach traveling with children who have disabilities with planning and preparation. Dr. Emily King, a psychologist and mother of a child with a disability, suggests traveling is like any skill you teach your kids; it can get easier with practice. Starting with shorter road trips may make travel more manageable.

We've compiled tips, resources and expert advice for managing road trips with kids who have disabilities.

Almost every child can display behaviors that may not be safe while driving, but children with disabilities may be more prone to such actions. Those with language delays may struggle to understand or follow directions, making behavioral and physical challenges more difficult. Creating a plan and preparing to stay calm when such challenges arise can ease the struggles that go along with road travel.

Children with ASD, developmental delays or other conditions may display behaviors that can lead to distracted driving on a road trip. Common challenges include impulsivity, hyperactivity, aggressive behavior or failure to follow directions. Many children go through a phase where they don't like being in a car seat or seat belt, but for some children with disabilities, this may be an ongoing issue that makes it hard to travel. Refusing a seat belt can obviously make it difficult to drive safely, especially if you're in the car for a long time.

These issues can be distracting — and dangerous — to the driver. Behavioral challenges can also arise when kids don't understand what's going on, as with children with limited language development or delays.

Children with ASD may be exceptionally rigid or sensitive to changes in their routines. Specific physical needs can be complicated to manage while traveling.

Challenges With Food: Many kids with ASD have particular eating habits and favorite foods. “A lot of parents spend a lot of time making sure they have the exact brand (and) the exact packaging for kids who are very rigid in what they're willing to eat,” said Dr. Elizabeth Caronna, a pediatrician specializing in ASD.

Challenges With Bathroom Breaks: There's no way to avoid the need for bathroom breaks on a long road trip, but using public toilets can be strange or difficult for kids, especially those with ASD. According to Caronna, using public restrooms can be tricky and throw off toilet training.

Challenges With Sleep: Caronna also says sleep disruption can be common among children with ASD while traveling. Sleeping in a hotel room or guest room at a relative's house can impact sleep well beyond the vacation.

"I hear that a lot," said Caronna. "'It all happened when we took the road trip, and since then the sleep has not been the same.'" Kids might insist on sleeping in the same room with caregivers if they got used to doing so during vacation.

Taking any road trip requires that you have good car insurance and essential safety supplies. You may need to take extra precautions and get special equipment when traveling with children with disabilities. Depending on your child’s age, size and individual needs, there may be safety products you should consider to ensure your trip is as safe as possible.

How much car insurance you need depends on many factors, including what your state requires and how much coverage you can afford. Each state has minimum liability requirements, but they may not be enough for families with children with disabilities. You may need a higher level of coverage for medical costs for a child with a disability in the event of an accident or to cover the cost of any vehicle modification or special equipment you may have installed.

Before you head out on a long road trip, make sure you understand your car insurance needs and check auto insurance quotes to see if there are better car insurance options for your needs.

In addition, make sure you have roadside assistance in case your car breaks down on the road. The last thing you want to deal with when traveling with a child with a disability is a major disruption like a breakdown without knowing help is a phone call away.

With planning and preparation, road trips can be manageable and fun for families of children with disabilities. Longer trips that involve overnight stays may take more practice and deliberation. There are many strategies you can use to make longer trips as smooth and enjoyable as possible.

You want to arrive at your destination safely and with as few incidents as possible, but what about having some fun along the way? Traveling is a great adventure for all members of your family and can be so for your child with disabilities as well. If you take time to practice, plan, imagine and discuss your travel plans ahead of time, getting there will be much more enjoyable.

Once you’re armed with the tools and techniques that will help you on the road, there are some essential things to know as you make your way to your destination. If you will be traveling with a service animal or want to seek out businesses that are equipped to manage guests with disabilities, the following tips can help.

If your child uses a service animal as defined by the Americans with Disabilities Act, your child is entitled by federal law to be accompanied by the animal at all times. This includes while in restaurants and hotel rooms. However, different rules apply if the animal is used for emotional support but is not a service animal that has been specifically trained to perform a task for the health or safety of the person with the disability. While some businesses do allow for the presence of emotional support animals, by federal law, they do not have to allow them unless they have been trained to perform a task. Some local and state jurisdictions may have laws regarding the use of emotional support animals. You do not have to furnish proof that your animal is a service animal, and your animal does not have to wear a special patch or vest, but your animal must be under control at all times.

Even if a service animal accompanies you, specific rules do apply. At restaurants, the dogs must remain on the floor at all times. Hotels are not required to allow service animals in the rooms by themselves. If allowing service animals would cause the business to alter the nature of a service or program provided to the public, the business can restrict the animal's use. An example would be if you have a service animal at the zoo, but certain animals in the zoo become upset over a dog's presence.

If you feel that your child has been discriminated against while using a service animal, you can file a complaint with the U.S. Justice Department. Sometimes calling ahead and explaining your child's situation to a manager can fix the problem.

It can be hard to stay calm when your child has a meltdown in public. Most children with ASD do not look any different from other children and may simply be judged by others as "too old" to be having a temper tantrum. As a result, strangers may not be especially sympathetic, and parents may feel judged. One strategy parents can adopt is to carry "My child has autism" wallet cards that explain your situation and ask for understanding.

Not all travel destinations or ways to get there are autism-friendly. Some have non-judgmental and well-informed staff trained on ASD and primed to understand the needs of people with ASD. Autism Double-Checked reviews hotels and airlines for their level of autism friendliness. A rating of "autism aware" denotes that staff has been trained on ASD, while "autism ready" means staff is trained explicitly about situations that might arise and how to handle them. Parent groups, such as those on social media, can also be good resources to find autism-friendly hotels or destinations.

If you’re planning to stay in hotels along the way, or if your destination is a resort rather than a relative’s house, you may want to buy travel insurance. Travel insurance can be helpful if something goes wrong before or during your trip. It may help you recoup your costs if your trip is interrupted due to a medical emergency or illness, weather event or other disruptions.

Make sure you know what the policy covers and that you could get help paying for a medical emergency or recouping your hotel costs.

There are many resources for people with ASD and specifically to help families traveling with children who have disabilities. Some resources include:

• Autism Double-Checked: Provides training and certification for autism-friendly destinations or travel companies. They provide guides and social stories for specific autism-friendly establishments.
• Carol Gray Social Stories: The creator of the Social Story concept offers explanations and samples of Social Stories, social learning tools that support children with ASD.
• The National Center for the Safe Transportation of Children with Special Health Care Needs: Part of the Automotive Safety Program at the Indiana University School of Medicine, the National Center provides safe transportation information and resources for providers and families with kids who have disabilities.
• Pathfinders for Autism: Offers an online provider directory, help line, articles and guides to understand and manage autism.
• Organization for Autism Research (OAR): Parent-led and science-driven, OAR provides information and directs research to improve the lives of people with autism.
• Center for Parent Information and Resources (CPIR): Serves as a centralized resource for Parent Training Information Centers and Community Parent Resource Centers, which work with families of children with disabilities.
• Autism Society: A national organization that advocates for public policy, operates the Autism Source database and offers a national contact center (800-3-AUTISM) to provide information and referrals.
• Autism Speaks: Conducts research, advocacy, and programming on autism.
• Financial Resources for Families of Children With Autism: MoneyGeek's guide to financial assistance options, including federal programs, tax benefits, grants and state aid to help families manage autism care costs.
• Financial Planning for Parents of Children With Learning Disabilities: MoneyGeek's guide outlining ways for parents to handle costs related to learning disabilities, from diagnostic testing to therapy, while exploring financial assistance options and planning for the future.