Q: Our adult child is married and may be thinking about starting a family. About a year after they were born, they started showing signs of autism. I recognized the signs myself having done a master’s in child development.
At that time, pediatricians weren’t well-versed in spectrum behaviors. Luckily, I was aware of Stanley Greenspan’s “Floor Time” and that sensory issues could be addressed with occupational therapy. To make a long story short, we made good progress, and by kindergarten had a diagnosis and appropriate ongoing treatment.
Our child now has a PhD and is teaching at a university. I don’t think our child knew of the autism spectrum diagnosis. They knew of the OCD diagnosis and have continued medication for that. They have grown out of the more autistic aspects. They’re extremely personable and sociable.
My dilemma: Should I talk to the couple (both professors) about our child’s early diagnosis and give them a heads-up about possibly needing to parent a child on the spectrum? Not to scare them but to prepare them? How much information should I share about the issues we had to address?
I know it’s important to pass down medical information to offspring. But I don’t know how to have this discussion. Looking back, I can see similarities with my brother and my father. But talking about autism rather than heart disease or cancer seems so different and more difficult. Any advice would be most welcome. Thank you.
- Conflicted Parent
A: Regardless of how adaptable your child is, or whether they are considering having kids, you’re right that they deserve to have access and transparency around their medical information.
Autism looks different for everyone, and it’s a spectrum. You may feel like your child has “grown out of” their diagnosis, but there may be other ways - that you’re not aware of - that your child experiences the world and their relationships differently than their non-autistic peers.
Having a diagnosis and their past medical information may help them continue to receive support or understand their own behaviors, thoughts and feelings more fully. Additionally, many autistic folks consider autism to be a part of their identity; that’s something your child should be able to embrace for themself.
Have this conversation in person, or at the very least over a video call if you’re not physically close. I suggest talking to your child alone; let them decide when and how to share this with their partner.
Be direct and honest during this conversation. This may sound like: “I have something to tell you and wish I had told you sooner. When you were X years old, you were diagnosed with autism. You received occupational therapy, and since you seemed to adapt pretty well, I didn’t think it was worth discussing over the years. I’m sorry I didn’t tell you sooner, and I am here to answer any questions you may have.”
While you may feel motivated to “prepare them” as future parents, don’t focus on that. Instead, focus on your intention of simply being honest with your child about their medical information. There’s no way to predict how they will respond. They may be upset that you didn’t tell them earlier or even shocked. Be mindful of giving them time and space to process this information.
If they do ask why you didn’t share it sooner, you can be truthful about what your fears were, but be sure not to get defensive about your decision. Take responsibility for not having shared this earlier, and let them guide the conversation after you share the diagnosis. This will help you know what and when to share. Simply: Whatever their questions are, be completely honest in answering them.
Talking about autism feels different and more difficult than talking about cancer or heart disease likely because of the messaging around the diagnosis that you are still unlearning. It’s not your fault; there were many misconceptions about what it means to be autistic that have been embraced by society and are still being challenged today.
You want to be radically honest with yourself about your own biases and worries - so as to not project these onto your child or into this conversation.
Finally, you will want to find ways to manage your fear or anxiety about this conversation and its aftermath on your own. Consider what self-care skills you can implement before and after this discussion to maintain your emotional well-being. This is not about your feelings nor is it your child’s responsibility to make you feel better.