Monthly Archives: December 2020

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Stuff you’ve wanted to ask about autism

As you likely know if you’ve been following our family, my son was recently diagnosed with autism and anxiety, in addition to an earlier ADHD diagnosis. After a lifetime of disability advocacy and professional work, our family is experiencing new aspects of disability first-hand.

As we have shared our son’s diagnoses, some common responses and questions have come up. I thought sharing on this blog some of what we are learning might be helpful for those who are in a similar process or who want to come along on ours. I’ll start with a couple of common questions and may post new ones over time.

If you have more questions, or simply want to connect, please feel free to email me directly: jolene.sharp@gmail.com.

Neurodiversity symbol

Autism Q&As

Q: Aren’t doctors handing out labels to everyone these days? Seems like any kid who is at all different, or who is struggling with stuff all kids go through, gets a diagnosis. Doesn’t that just tell kids something is wrong with them?

A: This is a common reaction. I have sometimes felt this way myself. There are a few reasons I’ve come to view this issue differently.

  1. A diagnosis doesn’t mean something is broken or wrong. It’s simply a way to better understand a particular person. My son’s diagnoses help us understand what’s hard for him, and why. They make it easier to know what’s going to be most helpful, and how to best support him. I know this, because we struggled for years without a diagnosis and tried a lot of stuff that didn’t work for him. Now that we better understand what is going on, it’s MUCH easier to know what kind of help he needs, and to support his many gifts. We can now access resources and community. For many families, a diagnosis opens doors to much-needed services, like speech or occupational therapy. I understand that for a lot of people, a diagnosis carries stigma. But that’s a problem with hurtful thinking – not with the diagnosis itself. Rejecting information about how my son’s brain works would do active harm to him and to our ability to be the parents he needs. Instead, we choose to embrace all of who he is. We choose to work to increase understanding and eliminate hurtful stigma that sees disability as brokenness.

  2. It’s easy to understand why people would get the mistaken idea that neurodevelopmental disabilities like ADHD or autism are being over-diagnosed. We certainly see many more kids being diagnosed than we used to. You’ve likely seen headlines about “increasing prevalence.” However, it’s important to remember that we’ve learned a LOT more about these disabilities over the past 20-plus years. That has helped us get better at identifying them. More children have access to screenings at younger ages – which results in more kids being diagnosed and getting help sooner. Even so, research tells us there are still many kids and adults with neurodevelopmental disabilities who have gone undiagnosed. This is particularly true for people of color and for girls and women with autism. (There is a lot of work happening to close those gaps. See recent CDC information on racial gaps in autism diagnosis.) The key thing to know is that specialists today have a much better understanding of what is happening in neurodivergent brains, and they have very specific criteria for diagnosis. Instead of being dismissive, it’s worth taking the time to understand what these developmental disabilities really are.

    Resources our family has found helpful:
    Driven to Distraction, by Edward M. Hallowell, M.D. and John J. Ratey, M.D. – a great guidebook to ADD/ADHD
    Welcome to the Autistic Community – a plain language guide from the Autistic Self Advocacy Network

  3. When parents feel there is something going on with their kid – there is likely something going on with their kid. Parents who seek help do so because they see a child who is really struggling. If you’re not a live-in witness, be very careful of judging “that’s stuff all kids do.” Sometimes, a developmental difference is first apparent to those outside the home. But my experience tells me that many neurodivergent kids work very hard to maintain as best they can what is expected of them in public, and then vent the resulting stress, anxiety, and exhaustion in the safety of their own homes. I can tell you: It is very hurtful when people minimize something they don’t understand, or worse yet, blame your parenting. The daily reality in our house has changed dramatically for the better over the past year. Understanding and the right support made all the difference.

Q: Does your child have high-functioning autism?

A: There is no simple answer to this question. Hang with me.

Functional labels have been common in the autism world for a long time. This is in part because of misunderstanding about the name: autism spectrum disorder, or ASD. Most people envision the spectrum as linear, with a person’s diagnosis plotted somewhere in a range from very low-functioning to very high-functioning, or less autistic to more autistic.

Rather than try to explain the spectrum myself, I am going to link to the resource that first reshaped my understanding. Please take time for this; it’s key to understanding autism.

“Autism Is A Spectrum” Doesn’t Mean What You Think – a blog post by C.L. Lynch

And another great visual: Understanding The Spectrum – A Comic Strip Explanation, by Rebecca Burgess

Many of the ways my son’s autism manifests are less obvious. He has a high IQ and strong language skills. He can skate by academically with minimal effort. This means the areas that are hard for him – some executive function, fine motor, social awareness, and emotional processing skills – could easily be missed or misunderstood as rudeness, distraction, laziness, immaturity, lack of discipline…  It means that for 10 years, no one put it all together. It means that his diagnosis is sometimes met with surprise or skepticism, because he doesn’t look like we think autism looks.

Many autistic self-advocates prefer to describe autism in terms of the level of support a person needs. Some people with autism need a lot of support for daily living. My son is likely to need less. What we have learned he needs most is a huge, heaping helping of radical acceptance to build his confidence to be truly, wholly, beautifully himself. We invite you to join us in offering that kind of acceptance to him – and to every child in your life.

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Understanding Corin

This is not a pandemic post. But in order to get to the main point, I have to start with the pandemic.

See, one of the gifts of this time is that I have gotten to know my kids. I mean, I knew them before. But after nine months of intensive time together, I REALLY know my kids.

Admittedly, that has sometimes involved desperate parents with glazed eyes wondering aloud how long it will be before babysitting and a night out are back on the table. But all in all, it’s been a gift.

I’ve learned things about my kids I didn’t know. I’ve learned things I maybe should have known but missed in the busyness of pre-pandemic life.

A lot of that has been delightfully beautiful, like perfectly executed ballerina twirls and skillfully shaded pencil sketches. Some of it has been hard, like learning how to support kids through anxious and unsettled times, or how to talk about racial injustice.  

I also learned that my son has autism. 

From this vantage point, it’s pretty obvious. But it wasn’t obvious to me more than a year ago, when our pediatrician mentioned it as a possibility. I remember responding, “This doesn’t look like autism to me.” I had more to learn.

It took us a year on a waiting list to get in with a developmental medicine specialist. That appointment came just a couple weeks ago, but by then – after those months of quarantine with my kids – I was pretty sure what the outcome would be. As suspected, we left the office long after dark with an expanded set of diagnoses: ADHD, anxiety, autism spectrum disorder.

Let me be clear: this isn’t bad news. Jon and I aren’t grieving. This is an important step in a learning process. It’s one more way we understand what makes our son tick and how we can best support him. As I told Corin that night, “You’re the same kid you were last night and the night before that and every night before that. This just helps us understand you better.”

And that’s the crux. The label is only helpful in the ways it helps us know our son, celebrate his many strengths, and help him with the stuff that’s hard.

A diagnosis isn’t an end point. It doesn’t tell us who Corin is. It does unlock more information and help pieces fit together that we all – Corin included – struggled to understand for so long. It tells Corin that he’s not broken. His brain is just wired differently. It helps explain why some things are much easier for him – for example, deep focus and learning in subjects he’s interested in, fantastic creativity, and a remarkable memory for details – and some things are harder – like some executive and social functions. 

A diagnosis can help us feel less alone. While every autistic person is unique (let me say that again: every autistic person is unique), there is a worldwide community of millions who share some common traits and experiences that set them apart from neurotypical people. Corin is reading an introductory book written by autistic self-advocates. He is seeing himself in those pages. Things that felt like a mystery click into place. 

Corin is still processing what all this means. I have watched him struggle with a realization that many things that make him who he is also make him different from his peers.

But we are here to beat a relentless drum of acceptance. We tell Corin: “You are beautifully and wonderfully made. The Creator who knit you together knows you more intimately than you know yourself and loves every molecule of you completely. He has great plans for you. Your family knows you and loves you exactly as you are. You get to define what you want your life to be, and we will be right here, supporting you every step of the way. When things are hard, we’ll figure it out together. There is nothing wrong with you. You are Corin – and that will always be amazing.”

I have a lot more to learn. We all do. We’ll be learning more about who Corin is for the rest of our lives. The same goes for Lina. But I have discovered such freedom in knowing that I don’t have to hold my kids to some fixed, external measure of success. In fact, I don’t define their success at all. (Confession: When I try, it often turns out I set the bar too low.) My kids will forge their own paths. I’m here to encourage and support. And you’d better believe, I’ll be here fighting like hell to make sure the world recognizes my kids for who they are and all they have to offer.

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As we have shared the news of Corin’s autism diagnosis, some common reactions and questions have surfaced. I plan to share another post in the next few weeks in Q&A form, to help talk about this path we’re on. Our family has always been very open about our experiences, and we think it’s important to continue that now. (Corin has approved this post!) So: If you have questions about autism – maybe ones you’ve been afraid to ask – or about Corin and his diagnosis, send them to jolene.sharp@gmail.com. I will do my best to use this space to share resources and what our experience has taught us. I am no expert, but I invite you into our learning process. I hope to hear from you!