16 Tips for Caregivers 

Parenting any child presents both joys and challenges, but parenting an individual with ASD brings its own rewards and challenges. In the beginning, you may feel overwhelmed by a variety of emotions. It is important to recognize and acknowledge these emotions and to take care of yourself during this stressful time. Every family handles stress differently, but the tips offered below are designed to help you begin the process of caring for yourself.

Get the Support You Need

Surround yourself with people who love you and educate them on your new adventure. Tell them how you are feeling and what you’re thinking. Just having someone listen can make all the difference. Also, consider looking into support groups for yourself and others in your family. There are many different, local options throughout the state (and nationally), and we have a few listed in the Community section of this manual.

Ask for Help

Your friends and family probably want to help but are not sure how to best approach you or what to offer. Don’t always wait for them to ask. Outline specific things you think you might need help with, such as babysitting, cooking, laundry or getting some items from the store. Asking specific people for specific tasks will make it more predictable and less stressful for all involved. This will also help them to understand what it is like to be impacted by someone in your life having ASD.

Make Time for Yourself and Family

Try to take daily breaks for yourself. They don’t have to be long or elaborate. Below are some suggestions on how to unwind and relax:

• Take a walk around the block, street, or neighborhood
• Turn your phone off for an hour
• Go out to eat or order takeout and don’t feel guilty
• Plan a weekend away
• If applicable, engage in a spiritual practice, such as prayer, meditation, or worship.
• Enjoy a slice of cake
• Exercise
• Go window shopping
• Sip a cup of coffee or tea in silence

Make sure you are getting some rest

The better you sleep, the more rested you will be and the more productive you will be with your family. Finally, make time for your spouse and/or other children. Again, these do not have to be long, elaborate activities if they are predictable and mutually enjoyable. This is a team effort and everyone needs to be healthy.

Self-Educate

Knowledge is empowering; learn as much as you can about autism and how to help your child. There is so much information out there and so many places to find it. You can start by:

• Talking to your child’s school, providers or family physician
• Accessing available search engines such as ARNI-online (autismsocietyofindiana.org/resources/), ASK (aboutspecialkids.org), and Indiana Disability Resource FINDER (indianadisabilityresourcefinder.org)
• Reaching out to other parents and/or parent-facilitated groups and advocacy organizations (e.g., INSOURCE, The ARC, Family VOICES)
• Contacting other state resources noted within the resource section of this manual (e.g., FSSA, IDOE)
• Consider participation in your regional HANDS Local Community Cadre or the Global Community Cadre (handsinautism.iupui.edu/collaborations/lcc/)
• Looking on the internet (e.g., HANDSinAutism.iupui.edu, IndianaNetwork.org), in books or magazines

Early or Educational Intervention

Start looking into early intervention programs in or around your area. This could be accomplished by contacting your school district, doctor, HANDS in Autism®, ABA Centers, other service providers, or families in your community. Consider writing your questions down to remember your questions and take notes on contacts and information provided.

State resources can also help guide you in the right direction, and we listed some places to contact in the “Resources for Individuals with Autism Spectrum Disorder” section of this chapter. For children less than 3 years old, contact First Steps under the Family and Social Services Administration (FSSA). For school age children, contact your local school district to begin the process of evaluation to identify the appropriate educational placement and interventions.

Transition Age Intervention

If your child receives special education services or has an IEP, stay aware of and in touch with your teacher or local education agency (LEA) as your child approaches the transition age range (i.e., 16-24 years of age). Within Indiana, this will occur in 9th grade or when he or she turns 14 whichever occurs first.  While transition discussions and planning should be occurring ongoing as it pertains to potential areas of need or support, this age is marked with the addition to his or her IEP of sections pertaining to goals, services and support needs in the areas of employment, education and training, independent living and community participation.

Regardless of services received, your child will be eligible for Pre-Employment Transition (Pre-ETS) services from 14-22 years of age so long as he or she has documentation of disability and continued enrollment within an educational program. Engagement in Pre-ETS services will help support your child as they are considered for Vocational Rehabilitation services moving forward with transition counselors having access to and supporting you through this process to determine eligibility.

You may also be considering guardianship options or as your child approaches 18 years of age. Questions guiding these decisions may include whether you should make a permanent decision about his or her decision-making capacity, the impacts of such decisions or if you could increase his or her decision-making capacity through skills training opportunities or the presence of a formal or informal supported network that can support decisions in areas where added guidance may be needed. These conversations can be informed through additional consultation and education (www.supporteddecisionmaking.org) prior to making a determination.

Adulthood and Aging Intervention

In working to ensure your child has a network of support and services through to adulthood, this network will help to maximize their independence, to sustain outcomes obtained through school and transition planning, and to optimize their overall quality of life. Early and ongoing use of tools and strategies such as the LifeCourse framework and other person-centered planning can help to plan for the range of supports and services that may be needed across the lifespan.

While legislation, services, and research are steadily expanding in the field of ASD and adulthood, early and sustained work in building a network of trusted persons, contacts and agencies will help to ensure your child has contacts to assist in decision-making and advocacy. Early and sustained advocacy for and work towards finding and sustaining meaningful employment or vocational experiences will further enhance his or her overall quality of life, psychological well-being, and healthier aging.