Caregiver support

Recognizing common sources of stress

Stress is an ever-present reality for military families, especially those affected by Autism Spectrum Disorder (ASD), as it affects the entire family. Awareness of these stressors can make these issues easier to bear.

Finances

Caring for a child with ASD can be a major financial burden. The cost of deductibles, copays, home safety and repairs, etc. can add up to thousands of extra dollars each year. To help lessen the financial burden, ask others who have experience caring for individuals with ASD (families, doctors or support communities) for tips and best practices to help limit the costs of care.

Routine chores and tasks

Daily chores and tasks can also be a major source of stress. The daily tasks of life and maintaining a household, in addition to working full-time are overwhelming for many caregivers. In these situations, being aware of the causes can help minimize the effects.

Relationships

Caring for a loved one with ASD can be a great source of stress on relationships including couples, siblings, grandparents, etc. Friends and family members sometimes have to restructure their lives and make sacrifices or special accommodations. These experiences can strain the relationship and cause much stress.

Remember that regardless of each person’s contribution, caregiving is difficult. Try your best to see it as a group or team effort and celebrate each other’s contribution and hard work. Feeling appreciated and showing appreciation supports a positive environment. Schedule one-on-one time together. If childcare is a barrier, learn about resources you might be eligible to receive. Encourage open and honest communication so everyone feels heard and that their concerns matter. Protect personal belongings from being damaged or destroyed (locked closet, chest or safe). Accept that frustrations and arguments are a part of every relationship.

Future planning

A major stressor for parents and caregivers with children with ASD is the future care and well-being of the child. Families may be concerned about what to do when the child turns 18 years old, availability and eligibility of care and treatment, and who will care and provide for the child after they are no longer able.

Home and public safety

Safety issues are a significant concern for a child with ASD. Depending on the severity of the child’s condition, they may lack certain skills that would help to determine if a situation is safe. Parents should discuss how to recognize and avoid potentially dangerous situations along with what to do if the situation is unavoidable. Securing a loved one’s safety requires time and planning and being proactive about home and public safety is critical.

Safety tips

• Teach the child basic personal information (e.g., parents’ or caregivers’ names and phone numbers) to be able to get in touch with you if lost or in case of an emergency. Begin with small steps, such as first name only, and then add more as the child learns. Visual prompts or cues can also help. Caution children from sharing this information with strangers. They may be excited to share what they learned with anyone who will listen.
• Create a personal information card for the child can carry, especially children who are non-verbal. Include their name, address, phone number and parents’ or caregivers’ names. Or, if more appropriate, safety temporary tattoos or stickers that a child can wear out in public.
• Teach children how to identify men and women in uniform and who wear identification badges (police officers, fire fighters and store clerks) so they know who to seek out if they are lost or need assistance.
• Discuss your child’s condition and needs with teachers, daycare providers, extended family, neighbors, police officers and other individuals in the community. Alert them to any potential risks to your child including wandering, fear of pets, attraction to dangerous things (cars, trains, etc.) or other unsafe activity. Provide at least two emergency contacts in case you cannot be reached.
• Create a handout to give to those who come in contact with your child with information such as a photo ID, your name, address and phone number as well as any life-saving details. This may also include contact information for emergency services.

Home safety tips

• Place gates in stairwells and doorways
• Lock windows
• Use childproof locks on cabinets
• Install deadbolt locks or home security systems
• Unplug appliances or store them out of reach
• Fence yard