What Is It Like to Be a Parent of an Autistic Child?

When you are the parent of a child with autism, the challenges multiply. Being a parent of an autistic child may cause you to feel guilt, grief, anxiety, frustration, and anger.

Parenting a young child is always challenging and exhausting. When you are the parent of a child with autism, the challenges multiply. It can be difficult for you and your child to bond. Your child with autism loves you, although they may not show it in the usual ways. You may have to find different ways to connect. Focusing on the love you share can make this and other difficult tasks doable. 

People with autism differ from most other people in several ways, including: 

• How they communicate
• How they interact with others
• The ways they learn
• How they behave

Another name for autism is autism spectrum disorder (ASD). This term reflects the diversity of people with autism. The amount of help they need to function can vary widely. 

To diagnose autism, health professionals look for two main signs of ASD. First, the child will lack the communication skills and social skills that most children have at the same age. Second, the child will show a pattern of behavior that includes:

• Actions that are repeated over and over
• Rituals
• A focus on tiny details

In children with ASD, these traits are present to a degree that affects how they function.

Typically, children with autism also have sensory problems. They may be sensitive to lights, sounds, smells, and textures, or they may seek intense sensory stimulation. Their ability to think and to talk can vary widely. 

Sometimes people believe that their child cannot have autism because they are highly verbal. While some children with ASD are non-verbal, others are quite talkative. They have a lot to say about the topics that interest them but don't understand how to carry on conversations.

If your child receives a diagnosis of autism, you will probably experience a flood of emotions, including:

• Guilt. You may feel responsible for your child's disorder, although knowledge about what causes autism is far from complete.
• Grief. You may feel a sense of loss because your child will not have the life you wanted them to have. Also, the life you envisioned for yourself will have to change. 
• Anxiety. You are likely to worry about your child's future. What will happen to your child if you die or can no longer care for them?
• Frustration. Friends and family members may frustrate you by a lack of understanding. In public, others may think your child misbehaves, which is upsetting.  
• Anger. You may become angry at the lack of support you receive from your spouse or partner, family members, and friends. You may not get the help you expect from social services.

On a positive note, it can be a relief to have a name for your child's symptoms. You will also learn that there are treatments, although there is no cure for autism. Those with ASD can grow and progress. A diagnosis enables you to start that process.

You are going to need help and support. That means sharing your child's diagnosis with others. Be prepared for resistance to the diagnosis. Many people have preconceived ideas about children with autism. Your child may not fit the pictures in their minds. Relatives may need time to process this information before they can accept it.

You can help those close to you understand autism by pointing them toward good sources of information. Asking friends or relatives to go on health care visits with you can increase their understanding. Still, it's likely that some people will find misinformation and share it with you. Try not to overreact. Remember that they're trying to help.

Having a child with autism sometimes means learning new ways to interact. Because children with autism vary so much, your child may not have some of these issues. But many children with autism have these traits:

• They may not understand facial expressions and other non-verbal communications.
• They may not like to be touched and be uncomfortable with physical expressions of affection.
• They take things literally and have trouble with humor, idioms, and figures of speech.
• They may be intensely interested in one thing and be unable to talk about anything else.
• They can lack tact and may say hurtful things.

If you're patient and remain positive, you'll find ways to connect with your autistic child. 

If you're the parent of a child with autism, you'll probably have to advocate for your child. That means standing up for your child in many situations, including at home and in public. You may feel more comfortable if you picture yourself standing up for all children with autism.

Another aspect of advocating involves knowing your child's rights and pushing for them to get services, especially from your school system. When going to meetings about your child, be sure to:

• Keep good records
• Get everything in writing
• Take someone with you to listen and provide support
• Be assertive but stay calm

You can also advocate for autism at the local, state, and national levels. Join organizations that will tell you how to work for improved care. You can give a speech, write a letter, attend a rally, or take part in other ways. 

Having a child with autism affects family life. In one survey, mothers of children with autism said their marriages have suffered. Some said they felt emotionally distant from their spouses. They also said they did not have enough time for their other children. Some of the other children said that they felt overlooked.

Stress levels go up when a family includes a child with autism. Although there are no easy solutions, it may help to:

• Ask your health care team for help and advice
• Spend one-on-one time with each child
• Look for a support group for siblings of children with autism
• Join one or more support groups for parents

The cost of having a child with autism can vary. Some countries provide more financial support than others. In the United States, medical care for children with ASD costs about 4 to 6 times more than care for children without ASD, on average. The behavioral interventions that some children with autism need can cost from $40,000 to $60,000 a year. 

Caring for a child with autism can affect your earning power. You might have to give up your job or switch to a lower-paying job with better hours. In some families, parents take on extra jobs to make more money, but this means more time away from home.