Some parents find out that their child has autism or Asperger’s at a young age. When this happens, the word “autism” may become part of the narrative of their child’s life. Parents may be very open about the diagnosis throughout their child’s life or they may let them find out second-hand through conversations with mental health professionals, doctors, teachers, and other parents. Often, however, parents don’t seek out or receive a diagnosis of Asperger’s or “high-functioning” autism until their child is a little bit older (elementary to middle school age) and their ability to handle friendships and social situations starts to look different from that of their peers. If this is you, you may be trying to decide how and when it is appropriate to talk to your child/teenager about their diagnosis. The later the diagnosis occurs, the more difficult the process of telling your child can be.
One of the best ways to know your child is ready to talk about their diagnosis is when they start asking you questions or bringing problems to you. For instance, if your son complains about not being able to make friends easily, wonders why his siblings have more playdates, experiences teasing or bullying, or expresses feelings that he is just “different” from other people, this lets you know he is seeking help and answers from you and it is time to start talking about autism. Every family and every child is different, but when you feel like your child is ready, here are some general guidelines for helping you have a conversation about autism:
DO: Make it an ongoing conversation, not a long, sit-down, serious “talk.”
Think about autism as being like any other important topic in your child’s life that you want them to understand. If you want to teach your child to respect others, you don’t sit down and have a single two-hour talk about how to respect people. You find “teachable moments” to talk about respect and help them understand how it relates to their everyday lives. Children, especially if they tend to be anxious or do not like to be the center of attention, will likely find it anxiety-provoking if you ask them to stop their video game and sit down at the dinner table in silence to have a serious talk. They may have a hard time paying attention to what you are saying and become uncomfortable and nervous about what you are going to say. It is important to make the conversation about autism a casual one so that they feel comfortable talking about it again and again with you. Each time your child presents a problem to you, you should let them know that their brain works in a unique way that is different from other kids they know.
If you find that your child is not bringing problems up to you and you want to approach them, try having a conversation in the car, while walking the dog, or doing something you enjoy together. You might say, “I’ve noticed you have been really frustrated about _______, I thought it might help if I could explain how your brain works.” Try to present the topic in a way that is not overwhelming or makes the conversation feel like a “big deal” to your child.
DO: Allow for questions.
Any time your child has questions about difficulties they face that are related to their diagnosis, educate them a little bit more. Try to answer their questions as openly and honestly as possible and don’t panic about needing to have a prepared answer. Children can often sense when you are not telling the whole truth. Make sure you let them know if you don’t have the answer, but follow-up with them when you do.
DON’T: Make the diagnosis the center of the conversation.
Try to focus instead on what problems the child is facing. Validate their frustrations or concerns and try to problem-solve ways to work on the issues. For instance, if they are being teased, help them figure out which kids they should try to join in with and which they should ignore or stay away from. Instead of saying, “They tease you because of your autism,” you might say, “Because you see the world differently, it might be hard to find the best people to hang out with.” Encourage them to talk to their therapist or find a social skills group in your area where they can practice these skills and meet other kids experiencing the same struggles.
DO: Emphasize that everyone with autism is different.
To make the process of talking to your child more complicated, many resources such as books, websites, and magazines don’t differentiate between Asperger’s or “high functioning” autism and the rest of the spectrum. Since mental health professionals changed to a new manual for classifying mental health disorders in 2013, Asperger’s isn’t even an official diagnosis any longer and now falls under autism spectrum disorder (even though Asperger’s syndrome can still be used for insurance purposes). Autism can be a confusing diagnosis for people to understand because it encompasses such a wide range of characteristics and symptoms. It is important for both you and your child to understand that no two people with autism are alike. An old autism cliché states, “Once you’ve met one person with autism, you’ve met one person with autism.” Your child might meet someone else with autism who is not in a co-taught classroom or is not able to communicate verbally at all and be confused about why it isn’t the same for them. It is your job to help them understand that autism can mean a lot of different things. People with autism, just like all people, have a variety of strengths and weaknesses.
DON’T: Use language that would be in a psychology textbook.
Try to stay away from works like “deficit,” “symptom,” or “impairment.” Words like this may make it hard for your child to focus on their strengths and cause them to feel limited rather than empowered. Giving your child too much information about the diagnosis itself may make them feel that they have more weaknesses instead of focusing on the things they can do really well. Use these ongoing conversations about autism as opportunities to help your child get to know themselves better rather than understand the diagnosis better.
DO: Remind them of the strengths.
Help your child make a list of strengths. Every time you talk about something they are struggling with, remind them of an area in which they excel. This can be really easy to do for children with autism. Your child may have an area of special interest that they are really excited about. On days when they are struggling to read, remind them they know more than anyone else about maps or World War II or dinosaurs or that they are excellent at remembering dates or drawing cartoon characters.
DON’T: Hand them a book and walk away.
Unfortunately, there are very few online resources for children and teens with Asperger’s. There is a lot of information for parents and a growing number of sites for adults with autism, but you will be able to help your child understand themselves better by having a conversation that is unique to them. Using online resources and books may make your child feel overwhelmed or even more “different” than they actually are. Although there are books and documentaries on Asperger’s and “high functioning” autism, they are often about one person or a small group of people explaining their own perspective and experiences. It is really important for your child to understand that although there are a lot of people with Asperger’s, they are all extremely different.
DO: Give them time to process.
Some children or teens will have a lot of questions and others need time to think about what you have said. Only give small amounts of information at one time so they don’t get overwhelmed. Another benefit of making this topic an ongoing discussion is that you can adjust the amount of information you share as well as the length of the conversation depending on your child’s mood, their reaction to the conversation, and whether they are facing a challenge or just curious in that moment. Check in with them after these conversations to see if they have any more thoughts or questions about what you discussed.
DO: Let them know other adults they can trust.
Help your child create a list of people who they can go to for help when they are struggling with something, have a question, or just need to talk. The list should include a mental health professional, a teacher, and/or another family member who is both familiar with autism and knows your child well. Having other people to talk to will reassure your child that their diagnosis doesn’t have to be a secret, they don’t need to be ashamed, and they are not alone.
DO: Let them know there is a larger community.
Although everyone with autism is different, your child should know that there are a lot of other people that have the same diagnosis. In addition, there is a large network of people out here (both with and without autism) that are advocates for the autism community. Start by letting your child know that there are organizations of people who support and embrace people with autism including the Autistic Self-Advocacy Network (ASAN), Autism Society, and Autism Speaks. If they ever express interest, help them find a way to get involved or join them in getting involved in their local community. This a great way for them to experience how autism can bring people together and create a sense of belonging.
The following is a link to ASAN’s website that provides a free handbook and video welcoming “newly-diagnosed autistic people and autistic people who just learned of their diagnosis to the Autistic community.” The website provides two versions of the PDF: one for adults and one for adolescents. As recommended above, you should avoid giving your child a ton of information at one time or giving them a resource and walking away. However, the information presented may help you find the words to explain the various aspects of living with Asperger’s or ASD to your child. This may also be something your child wants to explore with you or on their own once they feel more comfortable with their diagnosis and have had several conversations with you about it.
Last but not least, remember that you know your child best. Approach them in a way that feels most natural to you and rely on your instincts to make sure they feel comfortable, loved, and supported. Seek out the help of a mental health professional, medical professional, school counselor, or teacher if you have more questions or need to find additional support for your child.