How Accepting Her Autism Diagnosis Made This Mom a Better Parent to Her Two Autistic Sons
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Tiffany Hammond, who is an author, disrupter, and self-proclaimed pie-slayer, knew even as a little girl that she was different. That difference made her life hard, especially when she was a kid. And though there was an internal awareness, Tiffany was a freshman in college before she was officially diagnosed with autism.
Autism is a neurological and developmental disorder that affects the way people interact, communicate, learn, and behave. It’s known as a spectrum disorder for the wide variety in type and severity of symptoms.
Tiffany’s diagnosis came after she lost a cherished writing instrument before an exam. The pen, featuring a Troll topper, was broken and could no longer write, but Tiffany carried it everywhere she went.
“I lost that pen and I felt like I unraveled,” she said. “It felt like the world stopped. Everything that could go wrong, I felt went wrong.”
Tiffany had a meltdown.
“I didn’t go to class. I didn’t go take the test, I just stayed in my room. I stayed in my bed, under the blanket. I didn’t eat. I got up to go to the bathroom that was just about it. I was there for two days.”
When Tiffany did get up to return to her classes, she learned that she needed a note to excuse her absence. Someone on campus told her to visit the psychiatric ward to get the note. During the evaluation, a medical professional asked her, “Have you ever been evaluated for Asperger’s?’
The Diagnostic and Statistical Manual of Mental Disorders, known as the DSM-5, stopped classifying Asperger’s as an official diagnosis in 2013 as it was folded into the autism spectrum.
By the time she was in college, Tiffany had heard about the condition before, but had not been tested for it.
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While most children receive an autism diagnosis before the age of 2, as a Black woman, Tiffany’s late diagnosis is not uncommon.
People assigned female at birth and Black populations in the US are often diagnosed later than other groups. They aren’t readily represented in the research and are often excluded from services designed for autistic individuals.
Dr. Douglene Jackson, PhD, OTR/L, LMT, ATP, CYT, FAOTA, a consultant and occupational therapist, and a Black woman, attributes the discrepancies in diagnoses to prejudice.
“The face of autism today is not what we would think of as a little Black boy or a little Black girl or even an adolescent who looks like me,” Jackson said. “So that notion alone needs to be checked. Those biases around what autism looks like needs to be checked.”
After her evaluation, Tiffany left the psych office with a note for her class and additional resources about Asperger’s. Tiffany stuck the paperwork in a drawer underneath her clothes.
“I didn’t want something else to be wrong with me,” Tiffany explains. “I already felt different. I felt alone. And then I’m on this college campus and everybody seems like they have their stuff together. I didn’t want to stand out. I wanted to fit in. I wanted to blend so I didn’t think about it.”
From the time she was a freshman in college, until she was in her mid 30s, Tiffany didn’t think about it. She didn’t talk about. She didn’t tell her mother. (At the time of this interview, the two still haven’t had the conversation.) She just attempted to move on with her life, without acknowledging her autism.
But autism showed up again when Tiffany became a mother, first in her now 16-year-old son Aidan, and then later with her 14-year-old son Josiah.
At 17 months old, Aidan was not speaking. He was Tiffany’s first child, so she didn’t know if other children spoke at this age or not. Still, she took him to be evaluated.
“They looked at him for like 15 minutes and they were like, ‘Yup, that’s autism.’”
Tiffany did not take the news well.
“I cried. I felt I did it, like it was my fault," Tiffany said. “Nobody wants to know that your child has something that’s going to make their life harder. And at the time, I didn’t really know what that meant. I felt like the autism alone was going to make his life harder. And in many ways, autism does make his life challenging because it’s still a disability. But in a lot of ways, society makes his life harder as well. That was something I grew to learn and understand."
Her second son, Josiah, received his diagnosis when he was 6. And though this was the third time she had received this type of speech from a doctor, this diagnosis was more difficult to handle.
“Aidan, my oldest, he’s in this beautiful space of not caring what people are thinking around him. He’s going to be him, regardless," says Tiffany. "But Jo-Jo knew that the world was going to be unkind to him. I felt like I didn’t know how to help because that’s how my life was.”
Tiffany eventually learned that in order to parent her sons in the best way possible, she had to accept her own autism.
“In the beginning, I was not trying to be autistic,” Tiffany said. “I was just trying to be their mom and trying to figure out how to care for them. I prioritized them over figuring out what I needed for myself. That wasn’t working. It wasn’t working at all.”
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Eventually, Tiffany discovered that accepting her full self helped her better relate to her boys.
“Now, I accept all of who I am. I lean into all of that,” she says. “I think that I understand them in a much better way than I did when I was blocking who I was. I have all of these experiences of my childhood that I’m actively pulling from that I was denying in the past. It’s reference material. I go back to it and I can say, ‘Maybe this is why he’s feeling this way. Maybe this is why this is happening.’”
Tiffany and her sons have different challenges and different sensory issues.
Still, the similarities in their experiences have made Tiffany the advocate her children needed, especially in the school system.
With Aidan, Tiffany found that he was excluded from the larger student body.
“They wouldn’t take him to the assemblies or on the field trips,” Tiffany said. “One day a substitute teacher hit him. I went to the school and they had him barricaded in the bathroom with one of those gym mats.”
Sadly, things weren’t any better for her second son. Even with documentation from three different doctors stating that Josiah had autism, it was a fight to get his school to acknowledge it. Instead, they wanted to classify him as “emotionally disturbed.”
When Josiah had challenges at school, the first thing his teachers would do was call the police. When other non-Black students had similar challenges, law enforcement was not involved.
A study found that individuals with developmental disabilities, such as autism spectrum disorder, are seven times more likely to come in contact with police than those without disabilities. Given the history of racism and violence associated with the police and Black people in this country, those interactions can be harmful or even deadly.
In addition to the mistreatment, Tiffany was never satisfied with her sons’ individualized education programs or IEPs.
“I just got tired," she explains. "And I could see that my kids were tired. They were drained. I didn’t know what I was doing but I was like, ‘Let’s try homeschooling.’ So that’s what I did. We’ve been homeschooling for four years now.”
With her children away from traditional school, she’s seen her sons blossom.
“They’re more open. They’re more relaxed," she says. "Even with Jo-Jo, he never said a word at school, ever. He won a Spelling Bee championship, never said a word. They allowed him to write it. I didn’t realize it at the time but he was so blocked within himself, just so stiff. But he talks so much now.”
Being away from school has made Josiah more sociable.
“He used to only talk to us. Now, he talks to people at stores. He goes to buy his own things. He has short conversations with people. He’s into genealogy now so he’s all on Ancestry, sending messages to our family members. He would have never done that in the past. He does it with my mom and they get their phone numbers and they call them and talk to them. He’s just more free now.”
Aidan, on the other hand, is nonverbal and often uses an AAC (augmentative/alternative communication) app to communicate.
It’s estimated that 25% to 35% of people diagnosed with autism either have no speech or no reliable speech. While that is a sizable percentage, the nonverbal community is underrepresented in society or forgotten entirely, even within the autistic community.
“I wanted a place to belong that would understand me, understand my kids. And I didn’t find that, not even within the autistic community itself," says Tiffany. "Every space you’re in, online, offline, autism community, autistic community, they leverage speech. You can see it in how they share and not. The types of things they advocate for and how they consistently and persistently leave out non-speakers and their families. It was frustrating.”
Tiffany created the space she was seeking in Fidgets and Fries, a site and Instagram page (which boasts 59.2k followers) where she shares what life is like for her family with the hope of "cultivating a community that explores Intersectionality." She knows the representation of a Black family living with autism, with a nonverbal child is needed, especially for those who may not see themselves reflected in affirming ways.
“The [nonverbal members of the autism community] are out there but they’re hiding at home. They don’t go out,” Tiffany explains. “That’s a lot of what I do. I travel. I don’t care anymore. I come across people who are rude and mean. They yell at us and they yell at Aidan. It’s hard. I go to the hotel and I cry sometimes and I don’t want to go out. But I still do it because I want to show that there are families like ours out there and that we exist. Our experiences matter, especially Black autistic non-speaking people."
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In alignment with her goal to provide representation for nonverbal people in the autism community, Tiffany wrote a children’s book.
A Day With No Words invites readers to imagine what it might be like to communicate, like Aidan does, without spoken words.
Tiffany wrote the book as a tribute to Aidan.
“I just wanted this to be a book that is a celebration of my son and people like him,” Tiffany explains. “I wanted this to be a love letter to my kid. He has inspired me so much and I truly feel like he is going to change the world. He’ll do it through all the people he meets. The people who have gotten to know him are better for it. I want to share him with the world and inspire change. I think that this book is a good way to do that.”
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