LA: Welcome back to Special Needs Daily, because laughter is a therapy we can all afford. I'm Lori Ann, LA, a battle-tested single mom to three neurotypical young adults and two extraordinary nonverbal autistic teenage twin boys. And today we're discussing three words that have been uttered to every special needs parent at some point in their journey. Three innocent little words. Three words that can make a special needs mom's left eye begin twitching before the sentence is even finished. Have you tried to have I tried? Pull up a chair. How much time do you have? Because I have been doing this since my boys were diagnosed nine years ago. I've tried therapies. I've tried supplements. I've tried visual schedules. I've tried sensory things. I've tried hiding things in foods. I've tried reasoning. I've tried bribes. Whoops. They call them reinforcers now. I've tried prayer. I'm always praying. I've tried things supported by science. I've researched things with so little science that somewhere there's a scientist throwing up his hands in disgust. So, yes, there is a decent chance I've tried it. And if I haven't, there's an even better chance I've Googled the ever loving crap out of it. If you're raising a child with autism, Particularly a child who doesn't speak, people send you things. do they send you things? Articles, videos, Instagram posts, supplements, diets, detoxes, protocols, machines, doctors, people who aren't doctors but have really impressive Instagram lighting. Someone's cousins, neighbors, chiropractors, nephew who had autism until he stopped eating gluten. And of course, miracle treatments. I recently received an article with the words miracle drug and autism in the same headline. And listen, you put those words together, and every parent like me is going to look. Because underneath all my sarcasm, and there is a lot I'm still a mom. Of course I looked. Of course I read it. And I got to the end and had the same question I have every time I read one of these stories. What does it actually help? Don't tell me it treats autism. Autism is an athlete's foot. You can't just say applied twice daily until autism improves. What does it help? Because autism isn't one thing. This is the part I think people outside our world sometimes don't understand. Two people can both have an autism diagnosis. And look nothing alike in their strengths, challenges, communication, sensory needs, behavior, or level of independence. My boys are nonverbal. They need substantial support and 24-hour protective supervision. But they're also incredibly affectionate, they make eye contact, they seek me out when they want something, they participate in group activities. They play basketball, they play soccer, they play tag, they laugh, they engage with people. So when I read treatment increased eye contact, okay. Mine already looked directly into my soul when I've forgotten to charge their iPads. Next, increased affection. No shortage here. I have two teenage boys who still crawl all over me like I'm a human beanbag chair. Next, more participation in group activities. Wonderful. Mind participate. I can give you my list and it's not complicated. I want communication. One of my boys can parrot anything. I say something, he can repeat it back to me almost perfectly. But repeating verbal language and using verbal language to communicate your own thoughts are two completely different things. If there were something safe and scientifically proven that could help unlock meaningful communication, now you've got my attention. I don't need Cookie. I want, mom, my stomach hurts. I want something happened at school today. I want, I don't want to do that. I want, leave me alone. Do you know how happy I would be if one of my children looked at me one day and said, Mom, you're annoying. I'd probably burst into tears. He thinks I'm annoying. Thank you. I call everybody. That is what I mean when I say meaningful verbal communication. Not more words. You know what else I'd like somebody to develop? A protocol for understanding danger. Sign me up for that clinical trial. Because right now, the primary safety intervention in my house is me. And I have developed grip and finger strength that I believe should qualify me for professional rock climbing. My hand strength is spectacular. Why? Because sometimes the only thing standing between one of my children and a terrible accident, is my hand attached to his hand. I don't need better eye contact. I need stop means stop because a car is coming. I need my children to understand that sometimes mom isn't being controlling. Mom is trying to keep everybody alive and unharmed until bedtime. That would change our lives. Frustration can become overwhelming for my boys. And sometimes that frustration turns inward. pinching, head slapping, biting themselves, head butting me and scratching me. That's one of the reasons that this particular miracle drug story did get my attention. Because one of the claims being made about this drug is that it helped reduce self-harming behavior in this little boy. Okay, I'm listening. Because if you have something that has been scientifically proven to safely reduce self-harming I want to know about it. I would give anything to help my boys through those moments when they're so frustrated, overwhelmed, or unable to communicate what they're feeling that they hurt themselves. Not because I need them to behave more typically. not because I'm trying to turn them into different children, because they're hurting. They're my babies. Of course, I want to help them stop hurting themselves. so when I read that this little boy's self-harming behaviors reportedly improved, I'm interested. But I'm also going to ask questions. Was it the drug? Were any other therapies used in conjunction with the drug? How many children experienced the same improvement? What could be? Kinds of self injury improved? How much did it improve? For how long? What were the side effects? Did children on the spectrum with intellectual disabilities respond the same way? What about non speaking teenagers? Because that is the information I can actually use. And that's where I keep coming back to this frustrating phrase it treats autism. Because I still don't know what the hell that means. And scientifically, that's not just me being sarcastic. The word spectrum is there for a reason. Autism does not present exactly the same way in every autistic person. I know this from lived experience. My boys shared a placenta, and they're very different. One autistic child may speak fluently. Another may not speak at all. One may avoid eye contact. My boys make eye contact. One may not seek physical affection. Mine are affectionate. One autistic person may have an intellectual disability. Another may be intellectually gifted. Some autistic people live independently. Others, like my boys, require significant support with everyday life. Same diagnosis, very different human beings. That's not just mom talking, that's the science of autism. researchers themselves talk about the enormous Heterogeneity of autism, which is scientists speak for, these people are really, really different from one another. So when somebody tells me a drug treats autism, my immediate response is which part? Because autism isn't one thing you can measure with a thermometer. Did the person communicate more effectively? Did anxiety decrease? Did emotional regulation improve? Did repetitive behavior change? Did social interaction change? Did sensory distress improve? Did daily living skills improve? Did the person become more independent? What changed? Because if you tell me your drug increases eye contact, I am so happy for the families who desperately want help in that area. But that's not one of our deficits. If you tell me it increases affection, we're good. If you tell me it increases participation in group activities, wonderful. But again, not where we're struggling. but tell me you've developed something safe and scientifically proven to reduce self injury. I'm listening. Tell me it could help my boys understand danger. Where do I sign? Tell me it can help transform echoed words into meaningful, spontaneous communication. You've got my full attention. Tell me it could help one of my boys look at me and communicate, mom, something hurts. Or I'm scared. Or even Mom, please stop talking. glorious day. I'll shut up immediately. Okay, that's a lie. But I will certainly be delighted that he asked me to. That's why I don't want the headline Miracle Drug Treats Autism. Tell me this drug reduced self-harming behavior in X percentage of participants. Now we're talking. Then give me the ages. Give me the diagnoses. Give me the support needs. Give me the outcomes. Give me the side effects. Give me the receipts. Because there isn't one version of autism. And there certainly isn't one outcome that every family is sitting around desperately waiting for. And if science someday gives us something that safely and meaningfully helps with any of those things, trust me, you will not have to send me the article. And then I've read that the drug has a very favorable safety profile. Fantastic. But then I start seeing versions of no side effects. And that's where mom puts her reading glasses back on. because excuse me, no side effects. My allergy medicine has a commercial where everyone is frolicking through a meadow while a soothing voice quietly tells me I may experience dizziness, vomiting, and the sudden collapse of Western civilization. So you're telling me we've developed a medication That alters biological pathways in the human body, and there are no side effects. I'm gonna need more than a headline. And when you actually look at the research, that's not quite what the evidence says. the studies so far have been relatively small. Researchers have reported no serious adverse events in these trials, which is genuinely encouraging. but adverse events Have occurred. And more importantly, even the company developing the drug says its safety and efficacy have not yet been established. That is very different from no side effects. And I'm not saying that because I want this drug to fail. Quite the opposite. I desperately want science to find safe treatments that could help my boys and everyone else. But hope doesn't require me to turn off my critical thinking. If this medication someday goes through larger trials involving hundreds or thousands of people, including people with different levels of autism, different intellectual abilities, different communication abilities, and different ages, and the evidence shows meaningful benefits with minimal risk, I will be standing in line with everybody else. Probably holding two iPads, three different snacks, somebody's shoes, and one child with my special needs mom death grip. But yeah, we're not there yet. And promising is a perfectly wonderful word. We don't have to turn promising into miracle before the science gets there. And that's why these headings frustrate the hell out of me. Miracle autism treatment. Miracle, that's a pretty big word. That's Moses parting the Red Sea territory. You'd better have lots of evidence. And the showcased story involved. a very young child who reportedly made instantaneous dramatic improvements. I am truly happy for that family. If their child is doing better, that's wonderful. God bless them all. I don't want that little boy to struggle. I don't want any child to struggle. But here's a detail. I didn't find until much farther into the article. His father is also an investor in the company developing the drug. does that mean the father isn't telling the truth about what's happening with his son? Absolutely not. His child may have experienced every improvement he's describing. But does it mean I need to know about the financial relationship when I'm evaluating a glowing testimonial about a so-called miracle drug? Hell yes. That's called the conflict of interest. It doesn't automatically make the story false. It means the person telling me how extraordinary the product is also has a financial interest in the company developing it. And I'm sorry, but that belongs somewhere considerably closer to the beginning of the story than the end. Because I'm not just reading this as somebody scrolling the news over her morning coffee. I'm reading this as a mother of two non-speaking autistic teenage boys. You put miracle autism drug in a headline, and parents like me are going to click because hope will make you click. And that is exactly why transparency matters. I'm so happy for this little boy. I still hope every improvement his family is seeing continues. And I hope this drug turns out to be everything they're hoping it is. But now I want the clinical trials, not the testimonial. Because a testimonial can tell me what one father believes happened to one child. science has to tell me whether the drug actually caused it, whether it happens in other autistic people, which symptoms improve, how much they improve, how long those improvements last, and what the risks are. When we're talking about a three or four-year-old child, my mom brain immediately has questions because three and four-year-olds are developing rapidly. And autistic children can have very different developmental trajectories. How much of it was treatment? How much of it was development? Was it measured? How many children experienced the same thing? What were their ages? What were their support needs? Were they verbal? Were they nonverbal? Did they have intellectual disabilities? What were the side effects? I'm not a doctor. I'm not a scientist. I'm a mom who's been raising nonverbal autistic twin boys. And I read a lot. I read studies. I read articles. I read claims. I read the fine print. I read the thing linked in the fine print. I read the study referenced by the thing linked in the fine print. At which point I have forgotten what I originally Googled and somehow I have 42 tabs open. Because you know how people say don't go down the rabbit hole? I don't go down rabbit holes. I excavate them. I bring equipment. I install lighting. By the time I'm finished, that rabbit hole has plumbing and unlimited Wi-Fi. But to be fair, most people who send us things mean well. They do. They see something. They think of us. They want to help. I appreciate that. I truly do. So I'm not saying stop caring. I'm saying please understand what happens on our side of that message. the word miracle hits very differently. Hope is precious in this community, and I've said this before our hope is not for sale. So don't market to it carelessly. With all these years into this, here's where I've landed. I am absolutely not anti treatment. I am absolutely not anti medication. I am definitely not anti science. I'm not even anti trying things. Believe me, I am aggressively pro helping my kids. But I've stopped being impressed by the sentence. This helps autism. I want specifics. Who did it help? How old were they? What were their challenges? What changed? Was that change meaningful in their actual day-to-day lives? What are the risks? How strong is the evidence? And most importantly, is the thing it improves something that my children actually need help with? So the next time somebody sends me, have you tried? I promise I'll try to receive it in the spirit in which it was intended. I'll probably read it. I'll definitely research it. Let's face it, I'll probably excavate another rabbit hole and emerge six hours later, knowing the molecular structure of something. I cannot pronounce, but I'm going to keep asking the same question. What does it actually help? Because if someday the answer is meaningful communication, understanding danger, less self-injury, more independence, you won't have to send me the article. I'll already be figuring out how to get my boys to ingest it. thank you for coming to my special needs TED Talk today. God, give us an abundance of strength, stamina, patience, and compassion for whatever today brings. Give us wisdom to know when something deserves our hope And discernment when something deserves our skepticism. Help us see our children for everything they are, not simply the things they struggle with. And please always give us enough space to find the laughter. Amen. And remember, You're doing way better than you think.