Many families wonder when and how to approach sharing with their child that they have an autism diagnosis. There are no clear rules on how or when this talk should occur, but there are a few things you should consider:
- Autism is a lifelong condition and may unfortunately impact how others react toward your child. Generally, a person with a diagnosis of autism is already aware of their differences.
- A diagnosis is simply a description of features that are currently present – it may feel more real when a diagnosis is provided, but the symptoms did not appear simply because the “magic words” were spoken.
- A diagnosis can provide you with the language and a framework to consider using to meet any additional areas of need that are present. For example, your child can learn to advocate their needs to their teacher: “I have autism, I feel overwhelmed when there is a lot of noise in the classroom.”
- I, as well as many self-advocates that I have communicated with, have expressed that learning of our autism diagnosis was a relief – it provided us with a clear way of communicating to others what our differences are, which supported us with then advocating for any supports that we may need.
- I am of the opinion that my autism is nothing to be ashamed of. Learning about my autism provided me with insight into who I am so I could best utilize my strengths.
The strategies you choose to employ will likely differ based on the age and developmental level of your child:
Regardless of your child’s age, you may wish to check-in with yourself to assess how you’re feeling prior to speaking with your child. Consider asking yourself questions such as, “Do I know enough about autism to answer questions my child might have?” It is perfectly normal to feel like you don’t have all the answers and it is okay to say to your child “I don’t know, but let’s figure it out together!” You will learn and grow as time goes on and you may find yourself revisiting a conversation again and again as you gain new insights.
For younger children, you may wish to consider visual options such as Sesame Street, which has a character on the spectrum, or illustrated books and videos such as the ones found on the Organization for Autism Research. For some children, you may want to start by reading a story or watching a cartoon about a character with autism. After doing so, you can have a conversation about what the character experienced and ask if your child ever felt similarly.
For late elementary/middle school age and beyond, consider having an open conversation with your child about how they view their challenges and strengths. Children at this age may be acutely aware of their differences. Help your child understand any areas in which they may be struggling and why there may be a need to reach out to others for support. Emphasize the child’s strengths and provide reminders about how much you and others care for them. A helpful resource to consider at this age and onward is the Welcome to the Autistic Community booklet.
For middle school and high school age youth, you may wish to take the advice listed in the prior two steps. Your child may find some benefit in viewing media depicting people with autism. Some examples include Atypical on Netflix and the Temple Grandin movie. If your loved one prefers reading, you may be able to find some quality books by visiting your local library. Milestones Autism Resources also has a Recommended Reading List that can come in handy. Websites, such as autisticadvocacy.org and wrongplanet.net (founded by our 2018 Keynote, Alex Plank) can be great resources for your youth to explore what autism means to them and communicate with others about their shared experiences. Have a conversation with your youth about how they are similar/different than the people in these programs. Support them with identifying how their unique strengths and skills can help them be successful. At this age, you should consider involving your youth in their IEP meetings and other areas where they can develop self-advocacy skills.
At any age or stage, consult with an expert who is familiar with your child, such as a counselor or advocate. They will be able to support you with tailoring a strategy to the specific needs of your family and child. Additionally, if you need any assistance, the Milestones Help Desk is happy to support you with this process. Give us a call at 216-464-7600.
— By Nathan Morgan, MSSA, LSW, Early Intervention/School Age Coordinator at Milestones Autism Resources. Nathan also is an autism self-advocate who has shared his experiences on panels, at events, and on the local news. He is passionate about teaching and autism-related research.