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:

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.

For the love of weird brains

My son was recently diagnosed with ADHD.

There is a lot to unpack in that sentence. I’ve tried a half-dozen times to write about this. I’ve struggled to explain how we got here, but I think the best place to start is with Corin.

3C34DC0E-1252-4DBF-A401-3CB9BC4C1169Corin is a wildly smart and imaginative kid who thrives on love and affection and wows me with insights well beyond his years. He loves being the center of attention. He excels at reading and language arts, and many academic tasks come easily. He is obsessive in his interests (currently Pokémon, heaven help me) and lives deep in his imaginary worlds. He is sensitive and a keen observer of people, and he internalizes more than he lets on.

Corin also struggles mightily with emotional regulation and executive function. Because he is so bright, he is able to maintain well enough in school to avoid being flagged as struggling. His teachers know he isn’t performing to his full potential, but he’s a good kid who expends everything he has to meet expectations. That means he has nothing left by the time the school day ends. In the safety of our home, he releases pent-up negative energy in outbursts that leave the rest of us shell-shocked and exhausted. The cracked light switch and holes in his wall testify to the escalating rage that led us to get serious about finding answers.

We’ve sought parenting advice and tried every technique in the book. We’ve worked on his diet and sleep habits, limited his screen time, encouraged more physical activity and outlets like music lessons to build confidence. We’ve diffused essential oils and showered him with love and attention. He’s in regular therapy.

The bottom line is that a kid with an untreated ADHD brain does not have the control to use the strategies he’s learning when they’re needed most. We’re still in the process of figuring all this out, but treatment is necessary to calm Corin’s brain to a place where he can learn things like emotional regulation, impulse control, and follow-through on hard tasks. He needs help regulating his body’s hyperactive response to uncomfortable environments. While home is the place we’ve most felt the impact, his functioning in school and church have also been affected.

60C5B004-DA29-41C0-8069-EADDA84ABD45Part of my struggle in how to share this story is that I want to be clear I’m not seeking validation. We know we’re doing what’s best for Corin. I am sharing this chapter of our story because I know there are other families in our shoes, and because our family has learned the value of being open and real about our experiences.

We are not ashamed of Corin’s diagnosis. His brain works differently than most kids’. We’ve talked a lot with him about how amazing “weird” brains are, and how ADHD will give him a different perspective on the world. We’ve seen his relief at knowing there is a reason he struggles. After years of attending Buddy Walks and seeing the attention Lina gets, he’s feeling pretty good about his own brand of special. He knows we’re going to do whatever it takes to get him the help he needs. We talked about this blog, and he wanted me to share his story.

I’m also not going to lie about how hard all of this has been, and likely will be for a while yet. Being mom to my two children has demanded more of me than I could possibly have imagined. I have had to dig very deep, and grow beyond what felt possible.

I am tired. But I am also grateful and hopeful.

1A048D53-57FE-4C48-99F5-8B3405DE6727I am grateful for the incredible partnership of my husband. I am grateful for our support system of family and friends. I am grateful for compassionate and informed medical professionals and therapists. And always, I am grateful for my children. They are my heart, and remarkable people in their own rights. I am lucky they are mine.

I am hopeful because I know we will navigate this just as we have every other challenge that has come our way: with hard work, honesty, courage, and the confidence that God will give us exactly what we need for today.

Well, that, and plenty of coffee.