Autism is ‘not a superpower, not a curse,' but federal changes raise fears of discrimination, stigma

Yahoo

06-05-2025

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Yahoo is using AI to generate takeaways from this article. This means the info may not always match what's in the article. Reporting mistakes helps us improve the experience.
Yahoo is using AI to generate takeaways from this article. This means the info may not always match what's in the article. Reporting mistakes helps us improve the experience. Generate Key Takeaways
Lila Coburn is a college student, activist and autistic Kentuckian. (Photo provided)
As a child, Lila Coburn was considered a 'hard kid.'
She was bullied, found it difficult to make friends and struggled in math while excelling in English classes.
Then, at 11 years old, Coburn found out she had autism.
'I didn't really know what autism was. So it was scary, because … I thought of it as a disease. That's all I had heard it portrayed as, and I didn't know what to think. I thought I might die of a heart attack,' explained Louisville's Coburn, a sophomore majoring in sociology at Centre College in Danville.
She felt 'an immense sense of relief' when a therapist explained autism to her, and life started to make sense.
'It made me understand, once therapists started explaining it to me, that I wasn't alone and that this was who I was, and eventually I understood it to be who I was meant to be as well,' said Coburn, who is a leader and student advocate with her campus' Disabled Students Alliance.
Therapists who work with Kentuckians diagnosed with autism spectrum disorder say there are deep-rooted misconceptions about autism that lead to stigma, including the debunked yet pervasive myth that vaccines cause autism. While there isn't one known cause of autism, it's largely hereditary, according to the UCLA School of Medicine.
U.S. Health and Human Services Secretary Robert F. Kennedy Jr., President Donald Trump's appointee, has also peddled misinformation about autism that experts say further stigmatizes people.
Speaking of children with autism, Kennedy recently said: 'These are kids who will never pay taxes. They'll never hold a job. They'll never play baseball. They'll never write a poem. They'll never go out on a date.'
His comments quickly drew criticism from experts and people whose experiences prove those statements false.
Kennedy has also promised to find 'the environmental toxins … that are causing' autism within months.
'We know, as scientists, you don't do research like that,' said Qusayy Godbolt, who has a doctorate in applied behavior and learning and runs his own practice, Godbolt Behavioral Consulting, in Hopkinsville.
Putting an end date to research, said Godbolt, 'sounds like some confirmation bias might be coming out a little later.'
What is autism — and how does it manifest?
Qusayy Godbolt is a United States Army veteran, who served with the 101st Airborne Division and an applied behaviorist who treats a variety of mental health issues. He's the president and owner of his own practice, Godbolt Behavioral Consulting. (Photo provided)
Godbolt, who is also an Army veteran, has worked with children and adults who have autism for many years. He said the name itself — autism spectrum disorder — should key people in: autism exists on a spectrum and can look very different person to person.
'I got people who live independently. I have married couples who have autism — or one or the other has autism. It depends on the individual,' he explained, and cautioned against generalizing. 'When you've met one person with autism, that's exactly what you've met: one person with autism.'
Some people who have autism may have learning delays, according to the Centers for Disease Control and Prevention. Some may also have trouble in social settings, according to the CDC.
Dataya Hooks, a therapist with Louisville Mental Health Group, said some people may have trouble processing audio in loud environments.
Often, children who have autism will practice 'stimming,' she said — self-stimulating behaviors that may include flapping hands in excitement. The Cleveland Clinic reports stimming can help regulate emotions.
'I've seen so many different cases. And while some (people) might stim this way, some might not stim at all,' Hooks said. 'Or while some are verbal, some aren't verbal. So it just looks different.'
Godbolt said autism-related behaviors can vary greatly.
'You may have somebody with autism who's struggling with being vocal or using the latrine appropriately or … you might have someone that their main problem is socially interacting.'
Coburn, who also has several other diagnoses and is a wheelchair user, requires help with cleaning, cooking and other household tasks. She sometimes has difficulty with auditory processing and executive functioning as well. She cited rigid thinking as another trait of her autism, which leads her to 'ruminate' on conversations she's had.
'It's a really hard thing to live with. I'm not gonna sugarcoat it,' Coburn said. 'And it's something that can be very sugarcoated, especially when people with different support needs aren't highlighted.'
The hardest part, however, is loneliness, she said.
'Frequently in my school, at least … I have been isolated … to the point where people will full-on ignore me, even if I'm talking to them, and it's hard,' Coburn said. 'But also, I will say that I wouldn't change the fact that I'm autistic. I know some people would. I would not. It's made me who I am, and it's given me a chance to advocate for other autistic people and for society to improve conditions. Because a lot of the stuff that autistic people experience could be lessened by improvements to the accessibility of society.'
Godbolt acknowledged people with autism may need a variety of supports — noise-canceling headphones for coping with overstimulation, for example.
But, he said, everyone uses supports in their day-to-day lives — from alarm clocks to calendars — so using aids to access the world shouldn't be stigmatized.
Dataya Hooks is a clinical social worker in Louisville. She holds a master's of science in social work and works with both adults and children who have autism. (Photo provided)
Hooks said this need for resources could be a factor in why autism is often so politicized.
'When you think of OCD (obsessive compulsive disorder), the need for resources isn't as much as someone with autism may need,' she said . 'Maybe other people feel that they are disrupting society or things like that, when in reality, they're not. I think it just depends on how you view that person and what you're willing to understand and learn and educate yourself on.'
Parents, too, need to learn to recognize behaviors that might indicate autism instead of misinterpreting them as simple misbehavior, Hooks said.
'I think a lot of times it's just seen as, 'Oh, they're a bad child,' rather than: 'They have this diagnosis that's just not even in the open yet, and so it's hard for them to even deal with it because they don't have the tools to do so,'' Hooks said.
'It's not a superpower.'
Lila Coburn and her service dog, Atticus, 6. (Photo provided)
When Coburn found out she had autism, she had to educate herself on the spectrum and defeat misconceptions from television and movies.
'One of the biggest misconceptions out there too, is that it's a superpower. And it's not a superpower. It's not a curse either, but it's a lifelong disability. I didn't understand that at the time, obviously, as I was 11, but it really helped me as I began to age to know what was going on,' she said.
'It's a lifelong neurodevelopmental disability, and a lot of people just … see it as Sheldon Cooper,' Coburn added, referencing a scientist in 'The Big Bang Theory' who some fans of the television show have theorized is autistic. 'The reality is that's not what autism looks like for a lot of people. It is what it looks like for some, but for the vast majority, that is not true.'
Kentuckians who live with autism need more awareness and education about autism, which in turn can decrease stigma, the therapists and Coburn said.
For Coburn, 'the most important thing is, honestly, hands off our Department of Education,' she said.
The Trump administration has signaled it wants to see the U,S, Education Department dismantled, which could upend the government's ability to guard against discrimination through its Office of Civil Rights.
'That's what protects autistic people — and disabled children are able to go to school because of the Department of Education, and because of laws like the ADA and the IDEA and the idea that that would be taken away would be disastrous, because there would be no protections,' Coburn said. 'And if there are no protections, people might think, 'Oh, no one would kick a disabled child out of school because of their disability,' but … the disability community knows that's not true. It would happen. It's only a matter of time.'
For Coburn, no other policy is more pressing. The department ensures that students are not discriminated against based on disability and that schools provide auxiliary aids as needed, such as interpreters and talking calculators.
'I think that we can't worry about anything else until we know that our Department of Education is safe,' Coburn said. 'At least it's very hard to think about other policies until we know that.'
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