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How I Finally Told My Daughter About Our Shared Autism Diagnosis And Why I Wish I Hadn’t Waited

While I have been fairly certain of our family’s various neurodivergences for quite some time, only my eldest daughter Anya and I each have an official diagnosis of Asperger’s Syndrome. We were both diagnosed by the same psychologist upon our first visit to his office about three years ago, and although over the course of our sessions there, he verbally confirmed my suspicions concerning my younger two children, they weren’t technically his patients to diagnose.

Earlier this year, I finally set myself to the task of jumping through the hoops necessary to get an official diagnosis of ADHD for my middle daughter Marie and Autism for my son Ben, the resident baby of the family. Since ADHD varies a bit from my own atypical brain wiring, I’ve been eagerly reading and researching how this neurotype could present in my middle child’s behavior, which led to the realization that she is likely dyslexic, as well. Being homeschoolers, this immediately helped our recent struggles with teaching her to read with the same materials that my eldest had breezed through make sense, and I set out to discover what curriculum might be a better fit.

Honestly, that is another entire story, but it is relevant here because my eldest was listening (she is ALWAYS listening) as I talked over our options with my husband and called my mother to talk incessantly about weighing the pros and cons of different materials. (I mean, isn’t that how you process picking out your curricula?) Finally, a couple of months ago Anya started asking questions about her sister’s differing needs, and I explained to her that dyslexia means that Marie’s brain works a little differently when it comes to processing information and experiencing the world; that meant we’d have to approach things a little differently for her. Without skipping a beat, Anya said, “I know I’m not dyslexic because reading is SO easy for me, but…” Then she asked, point blank, “Do I have something else like that?” as her eyes searched my face longingly for an answer that might explain how she was feeling.

Now, I had known the time was coming for us to have this discussion. Her psychologist had recommended that we not tell her about her diagnosis until she was around 10; it was his experience that kids any younger used it as an excuse for misbehavior. At the time, I listened because this was all new to us. In retrospect, however, I feel quite differently. (More on that in a moment.) Anywho, I had been preparing over the past few months as I sensed her getting curious and, frankly, a bit confused about how she was being interpreted by others. I had a couple of books set aside, one a picture book from the perspective of a young girl with Asperger’s and another a collection of anecdotes from girls on the spectrum and their parents, both discussing the challenges and celebrating the advantages of life as an Autistic female. I wasn’t sure how I would broach the subject, but I knew I would just handle it naturally as I have any other question Anya has had about more mature subjects over the years.

The time had come a bit early, as Anya turned 9 last fall, but I didn’t let the silence linger after her pointed question; instead, I went straight to my room for the books, and then we sat on my bed as I explained:

  • You and Mommy both have something in common that makes us different from many other people. We are Autistic. That means our brains work differently from what is considered “normal” in society.
  • Emotions can be hard and feel really big to us. That’s why it’s difficult to hold in excitement, anger, or sadness. It’s also why things that scare you feel so overwhelming and might cause you to panic.
  • Our senses are more sensitive. We smell, taste, hear, feel, and see everything stronger and more vividly, which can cause us to get overstimulated and either shut down or have a meltdown.
  • Even though some of these things are harder for us, some things are easier for us. We each have gifts that we wouldn’t have without Asperger’s. Like, how we both read so quickly and understand complicated vocabulary, and how you remember the tiniest of details from a long time ago, sometimes even what day of the week something happened.
  • The things that we like become things that we love with every fiber of our being, and we put a lot of energy into those things to know a lot about them or be better at them than we might otherwise.
  • All of this explains why you might feel different from your friends; why sometimes the things they do don’t make sense to you, and why other times they don’t understand why you make certain choices or behave in certain ways.
  • None of this means there is anything wrong with us. We just have a different brain, and there are lots of other people out there just like us. Autism is just a different way of thinking and being, and it is perfectly okay to be the way that we are.
  • We should still do our best to work on ourselves when we do things that could be harmful to ourselves or others; everyone should. But, we don’t have to do everything the same way as everyone else.
  • Doing things our own way, though, will sometimes cause people to be mean or tell us we’re doing something wrong. It’s going to take time for the world to see Autism the way we do, and until then you just have to be brave and strong and stand up for what you need and what you know is right.
  • Don’t let other people make you feel like you are worth any less than them, and don’t ever be afraid to be who you are. You have so much to offer the world because of the way your brain works. Be proud of that.

Then, I handed her the books and told her I’d been saving them for this day. She smiled and shimmied into a comfy spot on the bed with excitement as she opened the picture book and began to read. Every few seconds she exclaimed, “Oh, that is SO me,” and “That is DEFINITELY me,” as she read about the experiences of the little Autistic girl in the book navigating her day. When she was done, she looked at me, beaming with pride. I told her she could ask me questions any time she needed to, and I told her exactly what her psychologist had said that had influenced our decision not to disclose her diagnosis to her until now. She told me she understands but she is happy to know now and proud that we are the same.

In the weeks since, our days have been filled with realizations of, “Oh, that’s why I do THAT!” and questions like “Mommy, is this because I’m Autistic?” I answer her honestly, helping her figure out her newfound identity, one I’ve embraced for myself over the past three years. And as these wonderful, in-depth conversations fill the moments between homeschool work and ballet classes, I’ve made my own new realization: I never should have kept this part of her life from her, this core piece of who she is. We would have still needed to have a more thorough, serious conversation at some point, but I wish I hadn’t avoided mentioning it in the day-to-day.

I wish I had kept the topic of Autism and how our lives are shaped by being on the spectrum sprinkled into normal conversations and events as we’ve done over the past month or so. The difference in our connection as a family and in Anya’s behavior and self-awareness has been absolutely amazing. She was already doing phenomenally with trying new things and talking herself through difficult scenarios after attending therapy for the past few years to help her cope with changes and process emotions, but this just gave her the missing information she needed to understand why that was even necessary. Having that knowledge has made a world of difference in her anxiety and helped her to be much more mindful and cooperative at home. (Not that she was super rebellious before, but now and again we could butt heads and dig our heels in against each other on something.)

She sees the world the same way she always has, but it’s like the color has been turned up a notch in the best possible way. I’m loving the renewed atmosphere of our home and confidence I see in both of us as we take on the world together. She is able to help me determine when certain assignments or curricula aren’t fitting her needs and why, and that is SO much less frustrating than me guessing based on my own assumptions. Our school days are going so beautifully now that she feels like she has a say and can understand why we need to change up things just here and there, such as when her coexisting dysgraphia makes writing too much by hand difficult. She is just…thriving in a whole new way.

The real question is, I suppose, why did I, a proud Autistic woman fighting for acceptance and the normalization of neurodiversity, allow the doubt of others not on the spectrum to creep into my psyche and inform when I would talk about Autism more openly in my own home? Honestly, I’m still figuring this all out for myself. Years of being told you aren’t good enough as a person does a number on your self-confidence. You start to believe the naysayers and doubt your own judgment. These last few years I’ve been slowly pulling myself out of that hole, but it hasn’t been easy or perfect.

Knowing who I really am has made all the difference in my own self-perception and abilities, and I should have known it would do the same for my daughter. After all, she is a piece of me, too, and I a part of her. I will never make the mistake of hiding any part of what makes myself or each of my children uniquely themselves again. It’s too important; for them and for the change we want to be and see in the world that currently misunderstands so much about us. We are not ashamed. We are here, and we are not broken. We will not hide any longer. We are Autistic, and we are proud. When you know better, you do better, and the world has a lot of learning to do.

You can find the books I gave my daughter here and here.

April is Autism Acceptance Month. Learn more here.