There is no unified response. Sometimes, there is relief; you see a loosening in their shoulders, a little less weariness in their faces. They take a deep breath, and it seems like the first full breath in a long time. It might be fear, you may see the worries compound in an instant, the lost look of someone that isn’t even sure what to ask first. It could be grief, or denial, or devastation, or contentment, or anger.
When finding out a child is autistic, the reactions will vary.
One often hears parents say, “I wouldn’t change my child for the world, but I would change the world for my child.” This colloquial phrase begs each of us to ask ourselves the question, “How do I impact the world around me?” As a clinician, a professional, a human being, how does the way you exist and interact within your professional world affect the lives of the families with which you work?
So, I ask you to reflect.
Pay attention to the language you use. Know preferred terms, and offensive ones, and understand that they may evolve. Be respectful, defer to the individual, and get information from a variety of sources, including (and centering) autistic and disabled individuals themselves. Know that the words you choose to use regarding autism and disability are critical and shape the way families and parents think about their loved ones. Know that the words you choose mean very little if you do not believe what you are saying. Understand that your beliefs, perceptions, and true character will show through, regardless of your words.
Give the parents and loved ones facts. Don’t apologize (in words or actions). Do not walk in with a somber face and say, “I’m so sorry, but your child has autism.” Try not to perpetuate the trope of autism as tragedy. Explain the diagnosis, the options. Instill hope. Talk about the child’s strengths and potential. Acknowledge fears but do not enhance them. Do not perseverate on anticipated challenges. Instill hope.
Provide a range of information in accessible ways. Explain things, check for understanding, and send the information home. Use visuals, give parents links to videos, podcasts, and blogs. Ask parents the mode in which they learn best and amplify applicable resources. Provide information on how to talk about autism to other family members and loved ones. Ask them to tell you when they are overwhelmed with information and take time to check in periodically, too. Crucially, teach them how to search for resources/information on their own and how to evaluate sources for legitimacy. They will need more, and you will not always be there.
Depending on the duration and nature of your professional relationship, discuss different models of disability. Talk about the medical model, the social model, and the neurodiversity paradigm. Explore the impact these models have on aspects of life.
Connect the family with others in the autistic community. Know the support groups in your area. Maintain a list of books, websites, blogs, movies, companies, podcasts, videos, and articles created by autistic individuals.
Be genuine. Parents and loved ones will look to you for guidance, for reassurance, for answers. While you do not need (or can possibly have) all the answers, be the needed support when possible and direct parents to other support when it cannot be you.
I am asking you to reflect. I am asking you to feel the full weight of the potential impact you have on the parents, children, and families with which you interact, not so you are harmed by the pressure, but so you remember to be intentional in your words and actions. Autistic children will grow into autistic teenagers and autistic adults and are not condemned to a life of tragedy and pain. Help create a society that fosters the autonomy, dignity, and self-determination of autistic individuals. Life may be different for autistic individuals, but it doesn’t have to be less.
Remember that.
