When your child is diagnosed with an Autism Spectrum Disorder (ASD), you can expect to experience a variety of thoughts and feelings. Some parents deal with an initial shock when their child is diagnosed.
However, receiving a diagnosis for your autistic child helps you to define the issues your child deals with and supports you in obtaining the help your child needs to best deal with their individual challenges.
Explaining autism to children, whether they are diagnosed with the disorder or not, can be a delicate task. It requires patience, understanding, and a willingness to answer questions. Here are some strategies and tips for explaining autism:
Process the Diagnosis Yourself First
Once your child gets an autism diagnosis, you are going to find yourself dealing with a variety of new challenges. One of these new challenges will be helping your child’s siblings, friends, family, and classmates understand what autism is.
However, before you throw yourself into supporting those around you and your child, first process the new diagnosis yourself.
Everyone will process their child’s diagnosis differently. Here are a few suggestions that can help you with the process.
- Educate yourself on autism. There are many websites that can be a great resource for learning about ASD such as the Center for Disease Control and ABA Therapy Resources. These sites will help you gain a fuller understanding of the disorder your child has been diagnosed with.
- Make sure your child has received the correct diagnosis. There is a good deal of overlap in diagnoses. If you feel that the diagnosis of Autism Spectrum Disorder fails to fit what you are seeing in your child, voice your concerns, and seek advice for a second opinion.
- Give yourself time. The diagnosis of ASD can be distressing for many parents. If you find yourself struggling with the awareness of your child’s diagnosis, give yourself the time you need to feel whatever you are feeling.
- Reach out for support and locate specialists to help you and your child. Every state provides early intervention services for children with ASD diagnoses.
Depending upon what state you live in, you may be able to find services for your child before he/she reaches the age of three. Initiating the process of obtaining services for your child will help you feel that you are making progress even in the early days of your child’s diagnosis.
Explain the Basics of Autism
While this may sound like a straightforward task, you are going to want to be aware of the age of your audience when you share information regarding your child’s autism diagnosis. If you start engaging your child’s sibling(s), friends, and classmates in a discussion of autism early on, you can add to the conversation as your audience’s ability to understand grows.
Children under the age of seven may not be able to understand theoretical information. You can find talking points in the “Growing Up Together” brochure created by the Autism Society. You are going to want to be very concrete in the information you share. Children under the age of seven can understand that:
- Your child’s autism isn’t something they can catch
- Your child’s autism isn’t anyone’s fault
- Your autistic child, if he/she is prelingual, hasn’t learned to talk yet
- You will keep them safe
There are several books that can help you introduce young children to what autism is. For example, It’s Okay to be Different uses bright colors and silly scenes to explain differences.
Children over the age of seven are able to understand less concrete information. Children between the ages of eight and eleven can handle more complex explanations. Children in this age range can understand that:
- Your child was born with autism
- Your autistic child’s brain is different
- Your child’s autism creates problems with speaking, playing, and understanding other people’s feelings
- Your autistic child can learn
- Your autistic child may have to work very hard to learn
- When your autistic child behaves aggressively it is the parent or teacher’s job to deal with it, not theirs
- That you are willing to answer questions, if they have any
- That they can help your autistic child by engaging them in play and/or showing them how to do things
You can find talking points for your teen on the Autism Society’s “Growing Up Together” brochure for teens.
You can find a list of the thirty best children’s books about autism here. If you find talking about autism difficult, there are a wide range of books that can help you start this conversation.
You may also find that providing books for your autistic child’s sibling can help them understand how they can engage with an autistic sibling.
Autism In My Family is an appropriate book for children aged 8-12 who have a sibling diagnosed with autism. This book is an interactive workbook that can help your child understand autism.
It will encourage your child to help their autistic sibling develop their own identity and emotions. This book can be supportive in helping you maintain a strong family and is a good supplement for siblings working with professionals to understand their place in the family.
Share Information Specific to Your Child
Once you have begun the conversation on autism, you will want to engage his/her siblings and friends by sharing information that is specific to your child. If your child experiences hypersensitivity to sounds, lights, or textures this is something that your child’s siblings and friends may need to know.
Understanding your child’s particular challenges will help those around him/her understand how your child is feeling and predict his/her reactions to situations.
For example, knowing that your child is hypersensitive to sound will help siblings and friends understand why your child is allowed to wear headphones when they aren’t.
Remember, Autism exists on a spectrum. Some children diagnosed with an autism spectrum disorder will struggle with verbal communication, others won’t. Some children on the spectrum will struggle profoundly with social interaction, others may show little impairment in their ability to connect with others socially. Help those around your child understand where he/she lies on the spectrum.
Share Suggested Ways to Interact With Your Child:
Help your autistic child’s siblings, school mates, and friends engage with your child by providing suggestions on ways to interact with your child.
- Teach the children around your child how to catch your autistic child’s attention before asking them a question
- Encourage others to always recognize and respond to your autistic child's attempts to communicate. When others respond to your child’s attempts to communicate, these responses act as positive reinforcement for the behavior. This will lead to your child’s increasing attempts to communicate. Nothing kills the attempt to communicate as quickly as having these attempts be ignored.
- Held those around your child understand that offering an autistic child a choice in activities will improve the likelihood that they will engage in play.
- Help others engage with your autistic child by teaching them to summarize other’s statements, check for understanding, and asking questions.
- Engage the children around your autistic child in games that your child enjoys. Play, particularly creative play supports the use of verbal communication. If you engage your autistic child and his/her sibling(s) in play, you will help them to develop a stronger bond while encouraging your autistic child to use their communication skills.
Read books about autism and autistic characters
Engaging your children by reading books about autism will help both your child that lives on the autism spectrum and their siblings. Reading books about autism helps to normalize the diagnosis.
You may know that 1 in every 54 US children is diagnosed with ASD, but that doesn’t mean much to a child. Meeting characters with autism in a book provides your autistic child with the understanding that they aren’t alone. Reading books about autism also helps your other children understand that, though their sibling is unique, they aren’t lesser.
You will find books related to autism that can help every member of your family. My Brother Charlie is a good book for children with a sibling on the autism spectrum. It is written from the point of view of a child with a younger brother with autism. This book allows an older sister to discuss her brother Charlie’s challenges and strengths in a kind and honest way.
All My Stripes allows children on the autism spectrum to travel and learn alongside an autistic zebra named Zane.
1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders offers strategies for those raising and educating children with ASD. This book has helpful suggestions for engaging your autistic child in sensory-motor activities using simple materials you can find in your home. You will also find tips for improving communication and behaviors.
Explain your child's strengths
Help your autistic child’s sibling understand that your child has strengths. We often view those on the autism spectrum disorder according to their limitations.
Clearly, you are going to help your children understand the limits that your autistic child may have, but don’t forget to explain their strengths as well. Help your child and their siblings, classmates, and friends to appreciate your child’s specific strengths.
Many children on the autism spectrum have a strong appreciation and understanding of particular topics. If your child loves trains, help those around him/her understand that this is a particular interest your child holds.
If your autistic child exhibits mathematical skills, help those around him/her see this strength. Play up the strengths of your autistic child just as you would the strengths of your other children.
Honest questions are not rude
Help both your autistic child and their siblings, friends, and classmates understand that honest questions aren’t rude. Establish an openness regarding your autistic child’s diagnosis.
This will encourage those around your child to express their curiosity and become more comfortable both with your child’s diagnosis and with your child him/herself.
Warm and open communication will help others develop an understanding of what you and your family are dealing with.
This attitude may also help those around your child develop empathy. If you approach questions in a challenging manner, you may well miss the opportunity to enlighten someone who could be helpful in your child’s life.
Some questions may be misguided, but if someone is expressing curiosity, they are generally trying to understand. Helping those around your child develop a deeper understanding of their challenges and abilities will ultimately help your child feel welcome and secure in their world.
What do you do when an autistic child hits you?
Most people tend to act out when hurt. You may have experienced this yourself, or you may see it, if and when, your autistic child acts aggressively toward others. Perhaps the best way to deal with your autistic child’s aggressive behavior is to establish expectations in those around them and to help reduce your child’s aggressive behavior.
Autistic children may tend to act out when frustrated. For many children, this behavior creates a reaction that is reinforcing. If your autistic child acts aggressively and obtains attention for this behavior, you may unintentionally reinforce this behavior. Clearly, this is the last thing you want to do.
It is best to remain calm when your autistic child behaves aggressively. Interrupt the aggressive behavior, and redirect your child’s energy. If you are working with an ABA therapist, they will help you with techniques and strategies for dealing with aggressive behavior.
Pay attention to what creates aggressive behavior in your ASD child. If you notice that your autistic child tends to hit to get attention when playing with siblings and friends, you can help reduce hitting by helping the other children understand to pay attention to your autistic child’s attempts to communicate.
If you notice that your autistic child tends to hit others when they become frustrated, you can help to reduce this behavior by checking in on the child to access their frustration level.
Pay Attention to Sibling Stress
Many children with siblings on the autism spectrum cope very well with their sibling’s diagnosis. However, children with siblings on the autism spectrum may experience stress that children in other families don’t have to deal with.
Issues that may cause stress for siblings include:
- Feeling embarrassed around peers. There are several points in a young person’s life when they want to be “normal” and to fit in more than anything else. Your child’s sibling may feel embarrassed if they feel their sibling makes them stick out as different.
- Jealousy over the amount of time and attention their autistic sibling receives. Parenting an autistic child requires a great deal of time and attention. Siblings can’t help but notice the amount of time and energy you spend engaging in supporting, educating, transporting, and attending educational and professional appointments.
It is possible for siblings to feel slighted if you spend all of your time and energy dealing with an autistic child.
- Frustration at not being able to engage their autistic sibling. Children on the autism spectrum often struggle to engage socially with others. If your child’s sibling doesn’t understand this, they may take their sibling’s lack of interest in them personally.
This is one reason it is helpful to make sure your autistic child’s sibling(s) understand how autism impacts a person.
- Anger over their sibling’s aggressive behavior. Children may not understand why you deal with their sibling’s aggressive behavior in a mild fashion. Your autistic child’s sibling(s) may be more apt to feel this frustration if there is frequent aggressive behavior and/or if you deal with acts of aggression from your autistic child differently than you do when they act aggressively.
It may be helpful to talk about these things as a family with some frequency.
- Concern about the stress felt by parents and other family members. If your autistic child’s sibling(s) are aware of your stress, they may feel protective of you. This is one reason that it is helpful for you to make sure you are dealing with your stress levels in a healthy manner.
Maintaining self-care and seeking professional help when you need to can help you deal with your stress levels. Dealing with your stress levels can keep your stress from spreading to your children.
- Concern that they may have to act as a sibling’s caregiver later in life. This is another time that it is important to maintain open communication with your children. Establishing and communicating appropriate expectations for your autistic child’s care can prevent these types of concerns.
Books like What About Me? A Book By and For An Autism Sibling can help young children understand the day-to-day struggles and joys of having a sibling on the autism spectrum.
