Let's Be Vulnerable: The perspective of the parent of an Autistic child
Parenting. You know, the word that comes with all the guidebooks and ways to prepare yourself for every developmental stage of your child’s life. Many (not all) are filled with certainties and fool-proof ways to parent in every situation. Until a detour happens, and despite your many attempts to Mapquest this new experience that has been unveiled, you are completely overwhelmed and feel like you’re in a foreign land on the freeway with a million directions to choose from. And you have no idea where to begin.
Parenting can be hard. And foreign. For all parents. I’m sure even in the 10 guide books you read while you were expecting your child indicated this. Sometimes we do the best we can do with the information we have. All parents experience curve balls. It’s normal. You can only do your best.
And sometimes, you just don’t know what you don’t know. New experiences continue to be present. I’ve observed it quite often, especially in my line of work. I have learned along the way information about child development and needs. In my search and pursuit of continuing education, I found an interest in learning about Autism and neurodiversity and ways to be affirming when working with neurodivergent individuals. Working toward expanding my knowledge of and discovering affirming approaches to working with Autistic individuals is something I have truly enjoyed doing since becoming a licensed counselor. Little did I know how much it would help me grow not only professionally, but also personally.
You don’t know what you don’t know. Until you do. Guidebooks. Undergraduate classes. Graduate classes. Continuing Education. All within my field of study have assigned a time to learn about development through the lifespan. Throw that together with work experience, and you develop a better understanding of child development. When my son was going through early development stages, many times I would take note or observe when I believed he was showing signs of developmental delays. Most often these were pointed out to my husband, and I would mention it during well-child checkups.
I would often remind myself not to compare him to other children and would be told to give him more time. So, we did. And along the way I would observe growth, but also notice additional delays in areas developmental milestone charts said he should be meeting. I’m sure many parents can relate to this experience, but some may not. You don’t know what you don’t know.
There can be a hesitancy to respond “no” to developmental questions your child’s pediatrician asks at well-child checkups. Why? Is it shame? Guilt? The assumption the doctor and nurses will believe you are a bad parent? The thought that maybe if you had read this book, or engaged this way the answers would unquestionably be “yes” instead of “no?” Maybe it’s all of the above, or none of these at all.
Recent studies have shown an increase in the percentage of children who are Autistic. Early on, we were given a referral for an evaluation for our son, and he was diagnosed with Autism. I had recognized delays and needs. I knew the diagnosis. But there was still a level of uncertainty and a flood of emotions and thoughts that filled my mind. What does that mean for him? What does his future look like? How can we continue to help him with his individual needs? How can we make sure his support system understands his needs?
I hear a lot of questions related to the afterwards of receiving a diagnosis. What do we do? What is Autism? What are these bazillion recommendations that we were given for follow-up services and resources? I think for me the latter was what I least expected. I was already aware of much of what I was told, but the feeling of overwhelm hit most when I was told what I should do to further help my child. I did research on areas I didn’t understand. (Yes, even us “professionals” do not know everything. And if someone tells you they do, they’re lying.) And when this occurred, I remember thinking, “Goodness, if this is overwhelming for me, I can only imagine what this is like for parents who have no prior knowledge before this appointment.”
My encouragement for any parent is to take time to educate yourself before engaging in any therapy. Do your research and decide on the services you feel are best and appropriate to your individual child. As with any approach, how does it fit with your child’s needs? How does it support your child? What therapies and therapists are neurodiversity affirming? How do they respect, value, and appreciate your child without discrimination, ableism, or encouragement of masking? You are your child’s biggest advocate and model.
For parents considering counseling services for their Autistic child, AutPlay Therapy is an integrative family play therapy approach that is neruodiversity affirming. It is used to address many mental health needs and concerns, and is not often an option parents are aware of or provided in a list of resources given upon diagnosis. Most of my training and education related to learning about Autism prior to my child’s diagnosis came from my desire to help Autistic children through AutPlay therapy. Information related to this form of therapy can be found at www.autplaytherapy.com.
Being vulnerable and expressing you don’t have all the answers, you don’t know everything, and perhaps you need support for yourself are all OK! Your amazing, wonderful child is still your amazing, wonderful child, and a diagnosis does not change that. The kiddo that you love, that makes you laugh, and smile, and drives you up the wall all the same. You will just understand their needs more, and you and your child can learn to advocate for those needs. Give yourself grace. Release any perceived shame, guilt, or doubt you have about yourself. We are all human, and you have the power to be the exact person your child needs you to be.