“Mom, I think I might be autistic,” announced my then 16-year-old daughter to me and her father, one Sunday afternoon.

An avid reader, Adrianna had stumbled onto an article about autism, and it resonated deeply with her because she had been struggling with a variety of social and sensory issues. The information in the article seemed like a reasonable explanation compared to the patchwork of ideas that she had put together about why she was so different.

I feel ashamed to say that, initially, my husband and I blew off the idea of her being on the spectrum because she didn’t seem to fit the typical description of an autistic child. She was very articulate, she had no obvious repetitive behaviors (or so we thought), and she seemed sociable enough. She was also an African-American female, and I had never heard or saw stories about Black girls with autism. 

But Adrianna continued to do more research in the form of online self-assessment tests, and by reading more articles and blogs. After several more conversations, we scheduled an appointment with a psychologist to the start the process of getting her evaluated, and Adrianna was officially diagnosed with Autism Spectrum Disorder (ASD) in early 2023, at the age of 21.

So What is Autism Spectrum Disorder (ASD)?

Autism Spectrum Disorder (ASD) is a neurological and developmental disorder that affects how people interact with others, communicate, learn, and behave. Although autism can be diagnosed at any age, it is described as a “developmental disorder” because symptoms generally appear in the first 2 years of life.

Below are some examples of common types of behaviors in people diagnosed with ASD, according to the National Institute for Mental Health. Not all people with ASD will have all behaviors, but most will have several of the behaviors listed below.

• Making little or inconsistent eye contact or intensely staring at a person
• Appearing not to look at or listen to people who are talking
• Displaying facial expressions and gestures that do not match what is being said
• Difficulties adjusting behaviors to social situations
• Difficulties sharing in imaginative play or in making friends
• Having an unusual tone of voice that may sound sing-song or flat and robot-like
• Having a lasting intense interest in specific topics, such as numbers, details, or facts
• Being more sensitive or less sensitive than other people to sensory input, such as light, sound, clothing, or temperature
• Being able to learn things in detail and retain information for long periods of time
• Being strong visual and auditory learners
• Excelling in math, science, music, or art

Although Adrianna is learning how to manage the symptoms that come with ASD, and is finding success, dealing with social expectations can be difficult especially when confronted with the callous comments from well-meaning, and sometimes not so well-meaning people. 

So below are some things NOT to say to a person on the spectrum, as well as some alternative statements to use, instead.

1. “Why are you so shy?”

My daughter and I recently attended a banquet hosted by a local Junior League chapter. We happened to be seated at a table with a woman who talked incessantly about herself, and dominated the entire conversation.

She talked so much that I could hardly get a word in, and I’m a very outgoing and talkative person. My daughter, who looked like she was feeling slightly overwhelmed, quietly sat there and listened.

After a while, the woman stopped talking, looked at my daughter, and asked, “Why are you so shy?” My daughter and I were taken aback by her rude comment, and I said, “Maybe she was waiting for you to stop talking”. We left shortly after that interaction.

The truth is that people on the autistic spectrum sometimes deal with social anxieties that make it difficult to interact with others, and many times they have difficulties making friends. 

It’s important to not make quick judgements about who you think they are, creating more barriers that only further distance them from others.

What you can say instead: I would love to get to know you better. Can you tell me a little bit about yourself? 

If the situation lends itself to this, you can ask them to go to lunch (dinner, brunch) so that the two of you can continue to conversation. This helps create community which people on the spectrum desperately need.

2. “You should smile more.” 

I cannot tell you how many time someone has said this to my daughter. She has had complete strangers in stores, at malls, even at church come up to her, and tell to “smile”. 

People with autism often express their emotions differently which sometimes leads people to assume that they are angry or upset.

I get that sometimes people are uncomfortable when they are interacting with someone who may not be smiling, but that’s not really the other person’s problem. If you feel insecure on uncomfortable, that might be a good time to do some self-evaluation. It’s not the other persons job to make you feel better about who you are.

We simply do not have the right to tell someone what to do with their body. This includes their face, which last time I heard, was on a persons body. As a general rule, you should also avoid offering suggestions to people you don’t know and who haven’t asked for your help.

What you can say instead: Nothing! Remember, we don’t get to tell people what to do with their bodies.

3. “Why are you staring at me like that?” 

According to the Above and Beyond ABA Therapy website, persons with autism use intense staring “as a way for them to regulate sensory input and manage sensory overload”.

My daughter had a couple of very interesting interaction as a result of her “staring” at people. The first one was with a professor when she was a student at a local university.

The second incident happened between her and her psychologist, oddly enough. Both men told her that they felt very uncomfortable and intimidated by her staring.

Her father and I jokingly told her that her staring is a superpower, and anytime she needed to scare someone, all she needed to do was to give them an intense stare.

Sometimes people on the spectrum have trouble looking people directly in the eye, and there eyes will wander away from the person they are talking to or who may be talking to them.

The reason for this is that making eye contact can be uncomfortable and stressful for people with autism, especially in social situations. They may also find it difficult to understand social cues and non-literal language.

What you can say instead: “You have an intense look on your face”, or “I notice you’re looking away from me. Is everything okay?” 

Asking if they are okay let’s a person with autism know that you’re concerned about them, and that you care.This can be very affirming, especially to people who have ASD.

4. “You don’t look autistic. You seem so normal.”

Honestly, what does that even mean?

We are now discovering that autism comes in many colors, shapes, and sizes. It also shows up in people who are outgoing and extroverted.

Adrianna has a good friend who has ASD who is extremely outgoing, and very expressive. Adrianna, although highly verbal and intelligent, is much more reserved, and introverted.

Autism Spectrum Disorder is just that–it’s a spectrum or a scale between two extreme or opposite points. Depending on where a person lands on the spectrum, they can have more or less severe symptoms.

What you can say instead: Can you explain what it means to be autistic?

It’s okay to admit that you don’t know very much, if anything, about Austism Spectrum Disorder, and to use the opportunity as a learning experience. 

5. “Don’t worry, everyone’s a little autistic.”  

Actually, that’s not true at all. Sometimes people don’t know what to say when someone tells them about a difficult situation, so instead of being quiet and listening, they say something condescending and dismissive.

According to the National Institute of Health (NIH), 1 in 45 adults in the U.S. are diagnosed with Autism Spectrum Disorder (ASD). 

While society is much more aware of autism today than ever before thanks to improved public health outreach and increased screening, advocacy and awareness efforts, there are likely many adults with autism who never received a diagnosis or were misdiagnosed. 

Everyone, however, doesn’t have autism, and we should be careful about saying such things.

What you can say instead: “I really have no idea what it’s like to be autistic, but I’m here if you would like to talk about it.” This is a thoughtful, respectful way of honoring someone’s diagnosis.

6. ‘Girls don’t get autism. That’s a boy thing.”

To be fair, until recently the poster child for autism has been white children, specifically little white boys.

Research shows that autism in adult women and girls can look different than men and boys. According to the DSM-5-TR, the American Psychiatric Association’s most recent diagnostic manual of mental disorders including autism spectrum disorder (ASD), autistic girls and women may present with:

• Better reciprocal conversation skills
• Higher likelihood of sharing interests with others
• Better ability to understand verbal and nonverbal communication
• Better ability to modify their behavior based on the situation
• Less obvious repetitive behaviors
• More socially accepted special interests (like celebrities or animals)

Sometimes, girls learn how to mask autistic traits or overcompensate for them, in order to appear more neurotypical or “normal” to others. This means that they may not get diagnosed until their teen or adult years.

What you can say instead: “Oh, wow! I didn’t realize that autism affected girls. Can you tell more about your journey?”

Some Final Thoughts About Neurodiversity

Neurodiversity refers to the concept that people interact with the world in different ways, and that there is no one “right” way to think, learn, or behave.

We live in a world full of people with various neurodiversities including autism, ADHD, dyslexia, Down Syndrome, and more. As a community, we have a responsibility to educate ourselves about these behaviors so that we can better support people who are living with these challenges.

.For more information about Autism Spectrum Disorder, visit https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd#part_2281

To follow Adrianna’s ASD journey, visit her Brown Girl on the Spectrum TikTok channel.

The time for gathering with friends and family to carve and eat the Thanksgiving turkey, and to prepare our homes for Christmas day by “decking the halls”, is almost upon us. 

For many of us this is a joyous time of year, full of festivities and fun, but for those who deal with the challenges of Autism Spectrum Disorder (ASD), or another type of neurodivergent disorder, this can be a time of anxiety and angst.

Such was the case for my youngest daughter, Adrianna, who was diagnosed with Autism Spectrum Disorder in early 2023. She recently shared that the holidays have always presented triggers for her. Everything from the parties, to the changes in routine that the holidays bring, and the different foods, felt like an attack on her senses. 

Listening to and learning alongside my daughter, as she navigates and manages her challenges with ASD, gives me a unique opportunity to share some practical solutions that can help others with neurodivergent issues. Below are four suggestions that will hopefully enable you, or someone you love, enjoy the holiday experience and avoid a crisis.

1. Watch your diet.

Holiday foods can be a major hurdle for people who have ASD, and for those who struggle with other neurodivergent disorders.

A 2013 study found that children and adults with autism have increased immune reactivity to gluten, a protein found in wheat, as shown by higher levels of gluten-related antibodies in their blood. 

Most holiday menus are filled with gluten-filled foods which present particular problems for people who need to avoid wheat-based foods, so here are some dining alternatives.

If you’re attending a potluck, bring your own dish or entree to share.This way you know there will be something for you to eat. If you have been invited to another type of event, eat before you go, and that way you’re not hungry, and won’t feel the pressure to eat things that are not good for you. Fix something to eat before you leave, and plan on eating when you return.

Ironically, my daughter, a culinary arts student and the owner of Cauthen Confections, a home-based baking business, discovered that she is gluten-intolerant after becoming very ill in early 2023.

As a result, she began to explore gluten-free, alternative recipes for some of her desserts and favorite savory dishes. This allows her to still eat most of her favorite foods during the holidays, and she is also able to offer gluten-free alternative dessert options to others who are allergic to gluten.

2. Control the stimulation.

As the mother of a daughter with ASD, I have come to understand how important it is for my daughter to listen to her body and make the necessary adjustments to regulate. 

Being overstimulated can cause a person dealing with a neurodivergent disorder like ASD to become dysregulated, so it’s important to give yourself permission to pull away from the crowd when you’re feeling overwhelmed. 

If you’re having a party in your home, you may need to quietly remove yourself and go to your bedroom, for a few minutes. If an event is taking place at another venue, go outside for a little while to get away from the noise, or go and sit in your car. 

Some people with ASD, like my daughter Adrianna, have particular problems with rooms where there is no carpet to absorb the sounds. The echoes and the cacophony of sounds created when lots of people come together overloads her senses. 

When this happens, she will find another part of the building where it’s quiet and sit by herself for a while. If she’s in a public space, like a mall, she will use a set of headphones to drown out noise.

3. Set goals for social gatherings.

Social gatherings can be tricky business for lots of people, but for those who struggle with ASD, it can be a living nightmare. 

Adrianna shared that seeing extended family and old friends that she hadn’t seen in a longtime, and who expected her to pick up the relationship where they had last left off felt weird and awkward. Reconnecting socially can be especially hard for someone who has ASD and is already struggling with social anxiety.

One of the things to remember is that you don’t have to talk or interact with everybody. 

Find a small group of people, and chime in about something relevant when you feel comfortable. 

Plan some things ahead of time that you would like to share with others. If you’re at a gathering with people you know, share updates about your life. You can even use the time to educate people about ASD, although don’t overdo it. You don’t want to turn the gathering into an ASD workshop. When you feel like you have met your goals, or if you feel yourself getting drained and tired, pull away to a quiet place, or leave the party.

One interesting fact that my daughter, Adrianna, shared is that she seems to connect more easily with people who are different from her in some way. 

For example, if she were to meet a 23-year-old Black female who had a similar background as herself, that person would have all of the cultural context to see all of the ways in which she differs, however, if she were to strike up a conversation with a 40-year-old man from Mexico, they would not necessarily see her as odd. 

The great thing about doing this is that it allows you to cross cultural, racial, and gender boundaries and make a wide variety of friends.

4. Take time to reset.

As I mentioned previously, the holidays and all that comes with it, can be physically and emotionally draining, so you must take time out to reset.

There are many ways to do this, and ultimately, you have to decide what’s best for you.

Some of the ways my daughter, Adrianna, resets herself is by getting to a quiet place, usually her bedroom, and getting away from noise. As an introvert and someone who has ASD, being alone is restorative and live-giving.

Refreshing oneself can include writing your thoughts down in a journal, taking a walk or doing some other form of exercise, curling up on the sofa with a cup of tea and watching a classic holiday movie, going to a yoga class or winding down with your favorite tunes. 

And don’t forget to breathe– a deep in-through-the-nose-out-through-out-the-mouth, slow release, cleansing kind of breath.Taking time to be still and breathe deeply, at regular intervals throughout the day, helps to heal both body and soul.

Wishing you all the happiest of holidays, and remember to take care.