Push to split autism spectrum by severity sparks controversy

[0:00] Last year, U.S. Health Secretary Robert F. Kennedy Jr. thrust autism into the national spotlight, [0:06] calling the developmental disability an epidemic and vowing to investigate what he characterized [0:11] as its environmental causes. His speech and the reaction to it struck a nerve in the autism [0:17] community and reignited debate about whether the autism spectrum is too broad and whether [0:22] those with the highest needs are being left out of the conversation. Judy Woodruff and producer [0:27] Mary Fecto have this story. It's part of our series, Disability Reframe. [0:33] It's a car. Oh, you want to go pizza car? [0:40] 24-year-old Pablo Mesa lives with his parents outside of Santa Cruz, California. [0:46] We call him either Pabs or Pablito. He is full of life and energy. He absolutely loves listening [0:55] to music. He is also on the very severe end of the autism spectrum. [1:01] He's not able to tell me that something hurts. [1:05] His mother, Alicia Mesa, has been his principal caregiver since he was diagnosed at age two. [1:11] He lives with deep frustration from not being able to communicate because he's nonverbal. [1:17] His autism presents with severe self-injurious behavior, aggression, destructive behavior. [1:24] And he has hurt himself over time. [1:27] He has. His aggression most of the time is trying to communicate that something's wrong. [1:34] So, instead of saying, oh, my head hurts, he'll start hitting his head forcefully. [1:41] He has to go around wearing a football helmet in order to protect him from more brain injury. [1:47] Pablo is supported by an around-the-clock team of at least three people, funded by the state [1:53] of California, who work with him to develop skills to become more independent and intervene [1:59] if his behavior becomes aggressive. [2:01] Systems are not built for individuals like Pabs. [2:06] High-needs individuals like Pablo once represented the vast majority of diagnosed autism cases. [2:12] I mean, I remember the first patient I saw as a graduate student, people said, oh, he [2:18] doesn't have autism because he's talking. [2:21] Can you help me make a cake? Make it flat? [2:23] Catherine Lord is a clinical psychologist at the University of California, Los Angeles. [2:29] She has spent more than five decades researching and diagnosing what is now known as autism. [2:35] We thought it was a very rare disorder that was defined by this combination of behaviors [2:42] behaviors that we still talk about, but we're definitely better at identifying autism in young [2:48] kids and also autism in adults. [2:51] Once thought to be a form of schizophrenia in young children, autism wasn't even recognized [2:57] as a distinct condition until 1980. [3:00] But in 2013, people with lower support needs, including those with a condition known as Asperger's [3:07] syndrome, were all folded into a new diagnosis that Catherine Lord helped create, autism spectrum disorder. [3:15] I think the idea of a spectrum was really more than just one thing. [3:20] It was the idea of like a rainbow where you have different hues and different levels of intensity [3:26] and different subtle differences, but it's all together. [3:30] And I think it may have backfired in some ways because it is now so big and includes so many things. [3:37] Driven in part by the broadening of the definition, the number of children with the diagnosis has skyrocketed [3:45] over the past 25 years. [3:47] Today, about one in 30 kids is diagnosed with autism. [3:51] But critics of the broad definition say it puts people like Pablo in the same diagnostic category [3:59] as Elon Musk. [4:00] I'm actually making history tonight as the first person with Asperger's to host SNL. [4:05] A 2021 Lancet Commission report on the future of autism research and care introduced the term [4:14] profound autism for individuals needing 24-7 care. [4:18] Typically, with IQs below 50, minimal verbal ability or both. [4:25] If you have a hard line, inevitably some people will get harmed by which side they fall on it. [4:31] Colin Killick is the executive director of the Autistic Self-Advocacy Network, a group led entirely by autistic people. [4:40] He says splitting the spectrum comes with a new set of issues. [4:44] The people who would be most hurt are the people who are right on either side of the line. [4:48] The person who, if they get labeled profound, get stereotyped, get stigmatized, get shunted [4:54] away from things like career services. [4:56] Or if they don't get labeled profound, lose access to vital supports and services that could [5:01] keep them in the community. [5:02] These are kids who will never pay taxes. [5:06] They'll never hold a job. [5:08] But the deep divisions within the autism community were on full display last year, after the way [5:14] U.S. Health Secretary Robert F. Kennedy Jr. characterized autistic people during a news conference. [5:20] They'll never write a poem. [5:22] They'll never go out on a date. [5:24] Many of them will never use a toilet unassisted. [5:28] What was your response to that? [5:30] Voilà. [5:31] Horror, shock, anger. [5:33] That's incredibly untrue. [5:35] Alisha Mesa disagrees. [5:38] A lot of people were offended. [5:40] However, as a mother of a severely autistic son, I felt relief. [5:46] finally someone in high office was acknowledging the reality that my son lives through every single [5:54] day to me that is not stigma that's truth alicia says pablo's high support needs have made it [6:03] difficult to access services even those provided by agencies that specialize in therapy for [6:09] autistic people i lost count after 15 agencies that all of them came in here one by one into our [6:17] home just to be disappointed a few days later when i got a call from them saying sorry but you [6:23] know we're not actually able to take your case she thinks the autism spectrum diagnosis should be [6:29] divided and people like pablo should be classified separately let's go on the sidewalk pablo requires [6:37] moment to moment supervision someone on the more mild side of the autism spectrum they could have [6:43] a completely independent life so it's not the same so there should be some distinction but over 2500 [6:49] miles away near akron ohio i do 31 year old jordan zimmerman worries that those distinctions would [6:57] have limited her opportunities zimmerman is a non-speaking autistic woman who communicates [7:04] through a text-to-speech program and because of that some of our questions were provided in advance [7:10] before i had access to reliable communication school was very difficult i struggled to regulate my body [7:16] which sometimes looked like frustration like hitting others or banging my head on walls but it was really [7:22] about not being able to express myself academically i was often asked to repeat the same tasks over and over [7:28] even things i had already learned years earlier so i wasn't just as connected socially and in society [7:35] i was also not even recognized for what i was capable of her autism was thought to be too severe for [7:41] her to learn in a classroom alongside her peers that changed when she started using a communication [7:48] app in an ipad at the age of 18. what was that like for you personally to experience that ability to [7:55] communicate for the first time it was painful to think about all i had missed and all the ways i had [8:02] been so misjudged but also incredible to think about how i could now have a say in my life and there's [8:07] some other plaques ohio university and boston college zimmerman earned a master's degree built a [8:13] career in inclusive curriculum development and now shares her story at speaking engagements worldwide [8:20] she questions whether those opportunities would have been possible if she had been labeled profound [8:26] based on the information i've seen and heard i would likely be classified as profound due to my need [8:32] for support and being non-speaking my worry with that for myself and everyone in the community [8:38] is that the narrative doctors told my family when i was four years old but also when i was 18 is wildly [8:44] different than who i am it will more likely cause more health care disparities because once a formal [8:49] label like profound autism is applied it becomes easier for people to give up back in california alicia [8:56] mesa says it's not about giving up it's giving her son a voice parents like myself are exhausted you [9:04] know i can't go and advocate for him you know just take a trip to washington so he has that potential to [9:13] disappear completely from the conversation you had a wonderful day today look for the pbs news hour [9:19] i'm judy woodruff in freedom california support journalism you trust support pbs news donate now [9:38] or even better start a monthly contribution today