When I diagnose autism in a child, teenager, or young adult, one of the parents often has an “ah-ha” moment about themselves. As they learn about the many different ways that autism can present, it resonates with them and I frequently hear, “you’ve just explained my whole life!” Other times, one spouse feels that autism helps them understand their husband or wife.
This makes perfect sense. We all learn a lot about ourselves as we parent our children. Our children are like us and different from us in so many ways, and the similarities and differences can help us gain insight into ourselves. This experience is not limited to autism; we may see ourselves in our children’s ADHD, dyslexia, or giftedness, or in their musical, artistic, culinary, or athletic talents, to name a few. It is a very common experience to understand ourselves more through our children, and this often occurs when our child is diagnosed with autism.
Here are some common questions parents ask about this:
If my child gets a diagnosis, is there a chance it runs in our family? Yes, there is a high probability. Autism is highly genetically driven; for example, monozygotic twins have a 60-96% concordance rate for autism, compared with only 0-23% in dizygotic twins. While there may be other factors at play, such as parental age at time of birth, we know for sure that there is a significant genetic component. But if I’m autistic, wouldn’t I know by now? Not necessarily. Simon Baron-Cohen and Meng-Chuan Lai, two highly respected autism researchers, wrote an excellent article about “the lost generation” of autistic adults, particularly those who have average to well above average intellectual functioning. These adults were coming of age at a time when our understanding of autism was quite limited. As a result, many, if not most, of them have been misdiagnosed and/or misunderstood throughout their lives.
We now know that autistic individuals have an endless range of presentations and experiences. Some parents never thought of themselves as being “differently wired” until their child was diagnosed, and they then gained a different frame of reference for what is “typical.” Other parents have had a vague sense over the years that they were somehow different but never could put their finger on it. Still others have wondered explicitly if they are autistic. Some have struggled with related difficulties like anxiety or depression and have never known what might underlie these issues. What we do know is that there are countless autistic adults who do not know that they are autistic. Could I be autistic if I’ve been successful in one or more areas of my life? Absolutely! Many adult autistics are highly successful in one or more areas of their lives. I know personally, or know of, autistics who are at the top of their fields in countless careers, including academia, IT, filmmaking, politics, music, comedy, journalism, medicine, law, and many more. I have also known many adult autistics who are wonderful spouses, partners, parents, and friends.
If I’m autistic, does that mean my other diagnoses, such as ADHD, anxiety, depression, bipolar disorder, etc., are wrong? Maybe, maybe not. Any of these can coexist with autism. It is entirely possible for someone to be autistic and anxious for instance. However, there are many undiagnosed autistics who, over the years, have been misdiagnosed with various disorders. For instance, autistic burnout can mimic depression and some people have been diagnosed with depression when they are actually experiencing burnout. As another example, some autistics get hyperfocused and very excited about certain topics/projects, forgoing sleeping and eating in order to focus on their topic of interest, and talking about it a great deal. This leads some healthcare professionals to misdiagnose them as bipolar. A thorough evaluation with a qualified healthcare professional would be able to help you sort this out.
What is a typical reaction of an adult who realizes that they might be autistic? This varies widely. For some people there is an instant recognition and it immediately resonates on a deep level. For other people, there is a gradual realization over time, rather than one clear moment of awareness.
In my clinical experience, most of the adults who come to this realization eventually feel a profound sense of relief and validation. For some, it can even be exhilarating. Still, seeing yourself as autistic for the first time can also be frightening or cause anxiety. It can bring up a tremendous range of feelings. For instance, on the one hand, you may feel anger toward your own parents for not recognizing the autism, but on the other hand you may feel forgiveness toward your parents, who had no way of knowing about the autism, given the narrow understanding of autism in the past. Some individuals also feel frustration at prior healthcare professionals for missing the autism. There is no “typical” or “right” way to feel; ideally, you will allow yourself time and space to move through this emotional experience.
What if I think my spouse or partner might be autistic? This is a frequent occurance. Sometimes the partner is open to having a conversation to explore this possibility and sometimes they aren’t. I recommend that you wait for the right moment when the topic comes up organically and everyone is feeling relaxed. Do not bring this up “in the heat of battle.” Accept that this will likely require multiple small conversations that result in tiny insights on both sides, rather than one big conversation that results in one big insight solely on the part of your partner. Most importantly, approach this conversation from a place of nonjudgmental curiosity and support.
Does it matter that I might be an autistic person raising an autistic child? Deeply empathizing with your child can be a double-edged sword. On the one hand, it can be overwhelming for your own emotional experience and can potentially bring up bad or even traumatic memories.
On the other hand, there are definitely potential advantages to being an autistic parent raising an autistic child. It can be helpful in terms of understanding and supporting your child. You may have the ability to understand your child’s experience on a very deep and visceral level, normalize it for them, and have an intuitive sense of what your child needs. Additionally, this gives you and your child a long-term perspective of how well autistic people can do in adulthood, which can be reassuring during times when your child is really struggling.
Gaining this insight can also be helpful for the marriage by providing a route for more self-compassion and less self-blame toward oneself and one’s partner. For instance, understanding that someone may have a blunt communication style is much better than perceiving that person as lacking empathy. What advice do you have for an adult who suspects that they are autistic, possibly after their child has been diagnosed?
First, know that you are not alone. I recently did a small survey of parents after I diagnosed their children with autism. About a third of the respondents have wondered or feel certain that they are autistic themselves, and about half wonder about autism in their child’s other parent.
Next, trust your instincts. If a voice in your head is suggesting this, it may be right. For many reasons, autism was (and still is) missed, particularly in women, highly intelligent individuals, and people of color. If you are learning about autism and it resonates with you, then pay attention.
Finally, as a parent, know that, if you are autistic you are in a unique position to translate your child’s experience to the non-autistic adults in your child’s life and become their most effective advocate.