Autism occurs on a spectrum. Therefore, autism does not mean the same thing for every person diagnosed. Autism can impact verbal communication, social skills, educational needs, and emotional regulation. Autism is also often associated with repetitive behaviors, sensory issues, and co-occurring disorders.
The diagnosis of autism in a loved one is life-changing for a family. It can be a challenge for family members to understand what this will mean for the individual as well as those who care about him or her. It is important for family members to learn about the implications of autism to make adjustments that will benefit their loved one as well as the rest of the family unit. Although this diagnosis may come with some fear and uncertainty, there are many ways family members can better deal with this reality.
1. Remember that autism is “on a spectrum.”
When your family member receives a diagnosis of autism, it is critical to recognize that this can mean many different things. Not everyone with autism will have the same behaviors, abilities, difficulties, or interests. Individuals on the spectrum vary in the same way people who are not on the spectrum do.
Try to understand that this diagnosis may change your perception of the difficulties your family member has been experiencing, and may help you understand their behaviors and how to treat them. For example, learning that your child has autism may help you to better comprehend compulsive behaviors or outbursts. However, be aware that your family member may not be different from others with this diagnosis.
2. Your family member may need more explicit instruction than someone who does not have autism.
Autism is a disorder that can impact social learning, and individuals with autism may find it difficult to understand subtle cues. It is important to recognize that your family member may need to be specifically taught behaviors or expectations that you may not anticipate requiring such detail. For instance, an individual with autism may not pick up on social cues about personal space without specific direction in that area. Accept that your family member may need this extra support. It will help him/her to learn the skills necessary for more functional social interactions
3. Educate others to help them understand your family member’s needs.
Just like you may need to adjust your expectations about what your family member needs to be taught, others around you may need to be taught what autism means for you and your family. This may mean having conversations with your child’s teacher or educating your friends and extended family about experiences that may be unfamiliar to them.
Do not be afraid to explain to other people that your child has autism and may have difficult moments due to this disorder. Teach your other children about educating their peers instead of being embarrassed. People may judge what they do not understand, and it is important for you and your children to learn how to be advocates for understanding, respect, and compassion.
4. Seek resources and support wherever possible.
It can be a challenge to meet your family member’s needs by yourself. Learn about the resources you may have access to and utilize them.
There are many organizations that can provide support for families who need assistance for a loved one with autism. For example, ACCES-VR (Adult Career & Continuing Education Services-Vocational Rehabilitation) is a program in New York that helps provide training and other opportunities for individuals with various disabilities and mental health disorders. Additionally, economic assistance can be provided for some programs for individuals with autism. These types of programs may be very important for families trying to meet the needs of a member with autism. Learn about what help is out there to help make life easier.
5. Know your limits.
You can’t do it all. You may need to find someone who can help your child to become more independent in specific areas. If your child struggles with one thing that you’re not sure how to address, consider a specialist in this area. (Also, as mentioned before, look for financial support when it may be available.)
Make sure you take care of yourself and recognize that your life is composed of many things, interests, relationships, and other loved ones as well. Your family member with autism is important, but so is everything else. Take breaks. Don’t feel guilty about recharging yourself for your own needs to be met. This will help you to be able to more effectively help your family member. As the saying goes, “You cannot pour from an empty cup.”
6. Appreciate small victories.
Success may look different than you imagined for your family member. This does not mean he or she will be incapable of great achievement, but you may need to adjust your expectations for achievement. For example, tasks may be smaller, and accomplishing them may take more time and effort, but these achievements should be celebrated. You and your family members will work hard for these accomplishments, and they are not insignificant.
7. Your treatment of all your children may not be exactly equal…and that’s okay.
At times, you may feel guilty that your child with autism may require more of your attention, direction, or support. You may worry that your other children may feel neglected. Recognize that your children have different needs and that it is okay if your time is spent differently.
Consider having a conversation with your children about how each of them may need different levels of attention and support, and that this does not imply one child is more important than another. Try to check in with them to make sure they are having their needs met. All of your children are important to you, even if your treatment of them may be different based on their individual needs and circumstances. Remember, quality is often more important than quantity.
8. Allow yourself time to be human.
There will be times that you may lose your patience and become frustrated. Your child’s repetitive behaviors or lack of understanding may frustrate you on a bad day. Although you may do your best to be understanding and compassionate, you will have these moments. Just as your child with autism may find it difficult to interact in a socially appropriate way, you may also find it challenging to interact appropriately with your autistic family member. When this happens, forgive yourself. Losing your patience with a child with autism is no different than losing your patience with any other child. It happens because you are human, and you will move past these moments.
9. Celebrate strengths.
Although you may feel scared or frustrated that your child may struggle in areas you did not anticipate, it is important to recognize the unique strengths your child possesses. Do not try to make your child fit into a mold you had imagined, but appreciate his interests and encourage him or her to pursue these areas. It is also important to recognize that we all may occasionally struggle with compulsive behaviors, differences in perception of personal space, or social anxiety. These behaviors may not be severe enough for a diagnosis of autism, but we all have unique strengths and limitations that make us who we are. There is no normal. This is a key understanding. Regardless of whether someone is an individual with autism or without it, one’s unique personalities, skills, and strengths should be recognized and appreciated.
10. Allow your perspective to be transformed.
When your child is diagnosed with autism, you may be scared for things he or she might miss, but you may find that this child helps you to have experiences you would have otherwise missed. Your family will appreciate things differently, and you will learn things from new perspectives. You may be challenged to approach situations in ways that you had not expected, and you will grow from these challenges. Your child may see the world differently, and he may show you what he or she sees. Imagine how you can benefit from that.
When your family member has been given a diagnosis of autism in a loved one, it is understandable to have uncertainty and anxiety about what this will mean for your family. Although this diagnosis will change your life in some ways, these changes are not all negative and can enrich your life in many ways. Following these tips will help you to navigate these changes more effectively.
Suggestions for further information:
Ariel, C. N., & Naseef, R. A. (2006). Voices from the spectrum: parents, grandparents, siblings, people with autism, and professionals share their wisdom. London: Jessica Kingsley Publishers.
Boone, V. M. (2018). Positive parenting for autism: powerful strategies to help your child overcome challenges and thrive. Emeryville, CA: Althea Press.