Ways Parents with Children with ASD Can Empower Themselves

Guest post by Kristine Kenny, MSN, RN, CPN, CAS

What does empowerment mean? According to Merriam-Webster dictionary, empowerment is the act or action of empowering someone or something. It is the granting of the power, right or authority to perform various acts or duties. Families who have a child with ASD require a wide range of services throughout their life. Empowerment among these families is needed to make sure that their child is receiving the proper services and best care that is available for the child. This article will discuss strategies for parents to empower themselves so they can be their best selves for their child with ASD and other family members.

Ways Parents with Children with ASD Can Empower Themselves

Finding empowerment while trying to raise a child with ASD can be challenging. This article will discuss ways that the parents can empower themselves to be able to achieve the resources and services that their child needs.

Strategies for Empowerment:

• Awareness
• Acceptance
• Action

Awareness

By becoming deeply aware of common challenges and realities that parents face with a child on the spectrum, one’s view of ASD can change from negative to a healthier perception.

The 2 most common issues parents face on this path are:

• Parental stress
• Stigmatization

Parental Stress

Studies have shown that caring for a child ASD is associated with higher levels of parental stress than parenting children with a physical disability or children with developmental delays without ASD. This could be due to a variety of reasons- challenging behaviors, judgment of others, or lack of resources. Another study suggests that when parents are supported and provided with proper services for their child, there stress levels decrease and their quality of life increases.

Whatever the case, parental stress is inevitable and will ebb and flow as the child grows. Keep this in mind along the way. Chronic stress can limit one’s ability to have the physical, mental, and emotional bandwidth to involve themselves in their child with ASD journey. Self-care is crucial to help decrease and to deal with the challenges. Empowerment will develop as the child and parent go through these fluctuations.

Stigmatization

Research states that families of people with autism can experience stigma. This means that they can face ignorance, prejudice, and discrimination due to having a family member with ASD. Stigmatization can occur in any setting, environment, or within groups of people, including extended family members, churches, and healthcare settings. Be alert to it.

Stigma can prevent families from reaching out for help and leave them with feelings of isolation. Although this is painful to realize, do not let it stop your efforts. Use it to fuel your mission to empower yourself and your family. Keep in mind, that there are a lot of people that do care about you, your child, and your family. The more you are around these supportive groups and people, the less the stigma will bother you.

Acceptance

Acceptance of your child’s diagnosis will take time. However, once you gain some acceptance of the situation, it will help you to recognize your value as a person and parent to your child. 360 Behavioral Health states that acceptance will help reduce depression symptoms and stress of the caregiver. This allows you to gain the mental and physical energy needed to obtain resources and support to help your child. This means you are facilitating your child to improve their social, communication, and behavioral skills to the best of their ability.

Action

Awareness and acceptance will help you to take the action that is needed to find the best treatment that is available for the unique needs of your child. This step is very empowering. You know your child the best. Taking action and working together with specialists to help your child is energizing and fulfilling.

Access to Resources

Understanding what resources are available for your child at each age of development is critical. Resources can include financial insurance coverage, healthcare, early intervention, and the multitude of other services that are available to help your child. Utilizing community, state and national resources are important so the parent can understand what is available and make choices for the unique needs of their child. Research states that parent empowerment is defined as the process by which parents gain access to resources and has been implicated as one factor influencing parent responses to challenges associated with parenting a child with ASD. It is linked to positive outcomes including parent self-esteem and perceived control over the environment.

Research states that as parents feel more confident in their knowledge of ASD treatments, it gives them more space for parenting and other things in their lives. When you can parent without being burdened by limited information, you can foster your role as the parent and ensure you are giving your child the care they deserve. Autism Speaks, CDC, and the National Institute of Mental Health: Autism Spectrum Disorder are websites that offer a plethora of educational materials to increase your knowledge base.

Understand your child’s rights

The Americans with Disabilities Act (ADA) is the main law that requires equal access for people with disabilities, including people on the autism spectrum. You should familiarize yourself with this law so you know how it applies to your child. Once your child enters the school system and an individualized education plan (IEP) is developed for your child, make sure you understand it. An IEP is a legal document that under federal law that is created through a team of your child’s school district personnel and the parents. It is used to ensure your child is receiving specialized instruction and related services. The PEAL Center is a great resource for IEP information and rights.

Care for yourself

Caring for yourself will have a trickling effect for the rest of your family. Self-care of the caregiver is critical in order to ensure the best for the person with ASD. This not only includes rest, good nutrition and support, feeling more competent in your ability to care for yourself gives you the energy and vitality to care for your family.

Looking for more information, you’ll enjoy these:

• How to Prepare Your Autistic Child for a Trip to the Doctors
• Self -Care for the Parent of a Child with Autism Spectrum Disorder
• Autism 101- What is Autism Spectrum Disorder
• How to Advocate for Your Child with Autism Spectrum Disorder (ASD) in a Medical Setting
• Siblings of Autistic Children: Common Concerns and Effective Strategies
• How to Connect With Parents (Locally and Worldwide) After an Autism Diagnosis

Key Takeaways

Empowerment for families with a child with ASD is a crucial part of dealing with the child with ASD and all of the challenges that will occur throughout a lifetime. As your child grows, your empowerment strategies will change and grow with that child. Empowerment takes time and patience, but it will build with time and experiences. Try and surround yourself with others who are on your same path. This will help you to encourage and inspire others who need it too. 

Kris is a mom of 3, one of whom has autism. She is a pediatric nurse, assistant nursing professor and author. When she has free time, she enjoys exercising, baking and binge watching TV series. Learn more about her at Autism Healthcare Books!