Wednesday, February 7, 2024

Neurodiversity, Autism and Dyslexia


Tuesdays or Thursdays are usually our lecture days here at the continuum care campus. I try to go to them all for several reasons: 1) I figure if they don’t get supported they’ll quit inviting speakers to the CCC (and I feel sorry for speakers when only a handful of us shows up), 2) I like learning new things, and 3) even if I don’t like the topic the experience might make good blog fodder.

This week's lecture was titled, ‘Neurodivergent StoryTelling.’ “What’s that?” I can almost hear a few voices coming at me. That’s what I wanted to know too, having never heard of term ‘Neurodivergent’ before. The Cleveland Clinic defines it this way: “The term ‘neurodivergent’ describes people whose brain differences affect how their brain works. That means they have different strengths and challenges from people whose brains don’t have those differences. The possible differences include medical disorders, learning disabilities and other conditions…Neurodivergent isn’t a medical term. Instead, it’s a way to describe people using words other than ‘normal’ and ‘abnormal.’ That’s important because there’s no single definition of ‘normal’ for how the human brain works.”

The cynical side of me wants to challenge the well-renowned Cleveland Clinic on their claim that we can’t label individual brains as normal or abnormal. Certainly the character Sheldon from The Big Bang Theory displays many/most of the classic traits of autism but you’d hardly say his brain is normal. I just finished reading a forum thread on Reddit about Sheldon where members were debating if he has high functioning autism or if he’s just a “rude asshole” whose mother protected him too much as a child. The fact that one of the writers on the show is autistic my money is on the former.

The lecturer is the author of a book titled On the Spectrum and he’s a college professor who didn’t find out he was on the autism spectrum until he was 35 years old. Obviously, he’s on the high functioning end of the spectrum who says he uses writing to work through his trumps and heartbreaks. (Me too!) He told of needing a lot of alone time, of his need for routines and being one-tracked and of the shame he felt before his diagnosis knowing he was different than his older brother.

As I sat listening to the lecture I was struck by how much of what he shared about his life before he was diagnosed could also be said about my experiences with being dyslexic and left-handed. How I didn’t know why I was different from my brother, of how I was called “dumb” and “stupid” because I couldn’t tie my shoes or read a clock until I was much older than other kids and because I struggled with reading and still can’t sound out words or spell those I haven’t memorized. I also get obsessed with projects to the point that my husband used to call me 'One Track.' Imagine my surprise when after the lecture I googled neurodiversity’ I found out that dyslexia falls under that umbrella. Would having your frustrated mother call you a neurodivergent hurt any less than having her call you stupid?

LeafComplexCare.com says, Dyslexia is associated with creativity, empathy, communication, design skills, observation, narrative reasoning and “big picture” thinking.” That sentence gave me a few more boxes to check off in understanding myself. Big picture thinking, for example, is something I’ve always been able to do and never understood why some people can't.

Goggle is so much fun. Next I goggled famous people with dyslexia and found a long list that includes: Richard Branson, Pablo Picasso, Albert Einstein, Cher, Anderson Cooper, Tom Cruise and Robin Williams. One of my favorite writers---Fannie Flagg---I’ve written about before in Trip to the Corner of Fiction and Dyslexia talks about how so many people can't understand how she can write when she can't spell. I get asked that all the time. Then I goggled famous people who are autistic and found a shorter list, but no less prominent, that includes: Bill Gates, Anthony Hopkins, Jerry Seinfeld, Albert Einstein, Emily Dickinson, Bobby Fischer, Elon Musk and Steven Spielberg.

What I took away from the lecture was that I had a misconception of autism. The image in my head was of little boys who seem to be locked inside their heads with few verbal skills, who need consistency in their routines and rituals but eventually grow out of it with treatments. I learned that it's a sliding scale kind of thing involving the classic symptoms. And I learned a new word: Neurodiversity which covers a whole host of brain related labels. All the websites I visited want to sell us on a romanticized view of these conditions, in my opinion, as being “linked to unique strengths and perspectives that enrich our world.” I get that, I really do. One cannot look at the lists of famous people who are “on the spectrum” without seeing the truth in that statement. However, what is lacking on those medical websites---but the lecturer focused on---is the pain that one goes through who is on the spectrum and how they have to work twice as hard to do average things. He talked about how just having a name for his condition changed his life.

On the other hand, perhaps the idea of abolishing the words ‘normal’ and ‘abnormal’ in this context isn’t akin to giving everyone a ribbon for participation---my first cynical impression. Maybe the goal in what I labeled ‘romanticized’ is to get society to accept and embrace the diversity in the way our brains function which in turn might cut down on the pain people on the spectrum go through? Whatever the case, neurodiversity is a complex topic and I’ve barely scratched the surface but it made pretty good blog fodder, didn't it? ©

45 comments:

  1. What an amazing blog! I'm glad you went to that lecture! I can't imagine your frustration growing up. Lefties, especially in the 50's and 60's were always trying to be "re-trained" I think lefties are smarter ... and many of the dyslexic people you named are also lefties! Seven presidents were left handed. Now I'm heading into Google land ....

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    1. Lefties do have our brains wired differently and trying to change us when we were little like they did in my generation causes addition issues.

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  2. I've noticed a lot of TV series on Netflix about neurodivergent people, and I think that's a great thing. They're obviously trying to get viewers to be more understanding and accepting.

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    1. I've noticed that too since I went to this lecture. It's a good thing for society to grow in our understanding of one another as human beings.

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  3. This is valuable information for all of us. Recently, my husband had a stroke and we were suddenly thrust into the world of trying to determine what was going on in his brain and how to restore what had been lost. We were fortunate to get him good care very quickly and he is making strides every day. One takeaway for me has been how quickly we can be affected. Our brains can be changed by a simple fall, medication, illness, stress, and the list goes on. And many are born with challenges. I'm so thankful that people are finally talking about these special needs and working on potential answers. In years past, the world was not nearly as accepting and supportive of those considered "different" but we're finally seeing progress. Jean, I appreciate your writing this post and sharing your own experiences.



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    1. I figured it was time for me to write something with depth for a change up. I've gotten in the habit of doing the easier, throw away topics.

      Your husband is SO lucky he got treatment right away. My husband was self medicating what he trouble was sore muscles and the hospital was treating him as a wait-and-see case because they though he overdosed on Flexidril, a muscle relaxer. He walked into the hospital and could talk but a half a day later he could do neither one ever again. When he lost his speech, that's when they did a brain scan and found the stroke. Now days they have good treatments if they catch them early. Just keep pushing for as much physical therapy as you can and your husband is willing to do.

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    2. denise.burchard@gmail.comFebruary 16, 2024 at 12:21 PM

      I just read a great book, Visual Thinking, by Temple Grandin. I think you would enjoy it, Jean, because I think you might be a visual thinker, too. I've always been a very verbal thinker, but I lost that when I had a stroke, and luckily I was able to also think in pictures. My words have come back as I've been able to recover, but for a time even the "voices in my head", you know that constant stream in your head of, "Why did they say that? Is there something wrong with me? Why did I do/say that?", all that went away with the stroke and it was very quiet in my head. After a few years, they came back, but now they're different. I now think of those voices as my little cheerleaders, they no longer criticize (which seemed to be all they did before), but applaud and encourage. Much better! And what has helped the most in my recovery has been exercise and massage. Insurance won't pay for it, of course, but physical therapy is only good for 8 weeks of insurance payments, and then they're gone, and I'm still in a wheelchair. I need constant, continuing help to improve, so I found a personal trainer who works with me twice a week, and I get a massage every other week, and I've come so incredibly far it's impossible to really convey to anyone who didn't see me right after the stroke how far I've come.

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    3. Thanks for the recommendation. I put it on my Amazon Wish List. Sounds interesting. I just wish the person reading the audio version had an easier voice to listen to. I 'read' most of my books that way now.

      Congratulations on taking your stroke recovery process so far! You have a right to be very proud of yourself. Back when I was in that circle of acquaintances and therapy groups I saw too many people give up on their selves and/or take their lack of a quick recovery out on the people around them.

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  4. This is a super interesting post, Jean. I have heard that word a great deal in recent years but without much specificity so I didn't know what all fell under it. It sounds like a very good lecture and a good lecturer. I suspect when one's autism or other disabilities are more prominent, it really does a number on self-esteem. One either either goes into the shell or overcompensates or has a degree of shame. I'm a leftie too (but never had issues with that, apart from learning certain things -- actually now I'm quite ambidextrous) and I have to really concentrate on interpreting numbers (3 and 8, 6 and 9). My worst driving moment as an intersection where I69E and I69W and I96E and I96W converged. I think I headed to Detroit instead of Kalamazoo. They all looked the same! Do you watch Astrid on PBS. (Rather, do you read it, because it is subtitled French). That's a fascinating lead character!

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    1. I don't watch stuff with subtitles. I read too slow for those to be enjoyable. I think all us lefties learn to be some what ambidextrous out of necessity because our world is built for a right-handed world. And from my personal experience and from what this professor was saying, self-esteem really is a big issue and maybe what this movement to not use labels like normal and abnormal will help with that?

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  5. So interesting! Have you watched Astrid on PBS? It's just a great detective show starring an autistic character. The actress isn't actually autistic, but we had to google it because she does such an amazing job. (At least as far as I can tell.)

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    1. Jeanie (above you) asked the same question! Sounds like a show that could add to our understanding of autism while entertaining us.

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  6. A little knowledge is an incredible thing, isn't it? Because of my education background, these are things I (thankfully) am well aware of. Knowing these terms and the fact that autism is a spectrum made me able to be a better teacher for all my students. I could be more inclusive and learn to teach each type of learner in my classroom. I took several master's classes on teaching neurodivergent learners, and it was surprising how well it helped everyone learn. All students liked being reached in a variety of ways, and it helped keep my methods fresh and my classroom vibrant.

    As a creative writing teacher, I had a high number of kids on the spectrum in that class. They were incredibly creative and enjoyed one-on-one conferencing about their work.

    I'm glad you went to that lecture and felt seen and maybe a bit more empowered.

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    1. Yes, the idea that these neurodiversities are on a spectrum (like a sliding scale) does make a difference in understanding and I imagine how one teaches. I bet your students love you. You are like my niece and great-niece in the classroom. You all care about the kids. My great-niece teaches creative writing to both honors student classes and another class on the other end of the spectrum.

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  7. It sure did make for some great blog fodder! I'm so sorry that you had to go through that labelling (as slow, stupid etc.) in your life. I wish we could stop doing this to people. The world is not binary like so many people take comfort in thinking. It's not black OR white, normal OR abnormal, male OR female...there are a whole lot of ANDS and PLUSES and SPECTRUMS out there that make this planet and its inhabitants so very interesting and diverse.

    Deb

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    1. So true. Things are different/better in my life time and with any luck our understanding of diversity will keep on growing. I think the whole gender identity issue is going through the growing pains of people waking up to the fact that one's sex is not always so cut and dry as male or female.

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  8. That sounds like an interesting lecture. People can be cruel or judgemental and that doesn't help anyone. Better to be kind and treat others as we would want to be treated.

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    1. Be kind is something I have to remind myself of once in awhile when I go visit my brother in Memory Care. There is a resident there who accosts me with hostility because she thinks I'm keeping the doors locked and wouldn't let her out. Usually an aid is near by to intervene but the other day no one was near and she scared the crap out of me.

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  9. My 23 year-old grandson is on the autism spectrum. He's a great guy with a great personality but has trouble processing auditory information among some other things. He has a memory like a steel trap though.

    The past couple of years he's been attending a school for adults on the spectrum (nonPareil) where they teach advanced computer skills and also life skills. He lives in an apartment with a fellow student, drives, and works as a food runner at a movie theater that serves dinners. (This is where his phenomenal memory comes in handy. He can rattle off details about movies, directors, etc. at the drop of a hat.)

    Recently we watched the Netflix show "Love on the Spectrum" about the struggle autistic folks have dating. He had recently joined an online dating site for neurodivergent people and he could see that he wasn't the only one having to deal with this problem. It can be heartbreaking.

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    1. Wow, thanks for sharing this. Why am I not surprised there is s website for dating on the spectrum. I'll have to look up the Netflix show. Our lecturer said the hardest thing he deals with now is marriage, of trying to balance his needs with this families needs.

      The Big Bang Theory, which I watch reruns of frequently has episodes that in hindsight I now recognize as autistic people in dating situations.

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  10. On one season of the Great British Baking Show, there was a woman who was neurodivergent. She made a cake for one of the challenges that described her brain. When you looked at that cake, you could see chaos and color. I thought it was really quite an apt representation.

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  11. Neurodivergent is a common term in the educational/psychological/spiritual world I seem to inhabit either by choice or by happenstance. I appreciate the work neurodivergent for its inclusion and the idea that we all have something different. There is really no "normal" and it's our culture and society that expects something not everyone can deliver. I know many people "on the spectrum" and some are lovely, some challenging, some jerks -- just like everyone else. Great consciousness raising blog!

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    1. The Lecture raised my consciousness, for sure. Glad you added your voice to this topic.

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    2. That's was me, Jean. Not sure why it posted anonymously. šŸ¤·šŸ»‍♀️

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  12. I definitely fall under the Umbrella ⛱️... šŸ˜†...and so does just about all our extended family. I'm thinking in a lot of families it has hereditary factoo. I like the term actually... Normal being totally subjective and overrated...winks... Dawn the Bohemian

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    1. Knowing you, you'd probably feel insulted if anyone called you 'normal." LOL

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  13. I have a daughter on the spectrum (high functioning) and life was very hard for her growing up. I'm proud that she got through that time with a good sense of self. I knew something was going on, but we never ever blamed her or called her dumb. We saw so many specialists and therapists before she was finally diagnosed at age 15. Her new therapist gave her the tools to understand what was going on in her brain and how to deal with it. Special schools also helped a lot! She started blossoming and is thriving now.

    Then we finally figured out that my husband is also on the spectrum. He wasn't so lucky to grow up without internalizing some really negative things. And it made our marriage difficult. When he finally realized it and got special therapy for autistic adults it again made a huge difference. I wish he and we had known this much earlier.

    We were just talking about it today and how we did the best we could with what we knew, but how much better it would have been to have some understanding of why things were so very, very hard.

    The lecture sounds very interesting and helpful.

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    1. Our lecturer said very similar things about his marriage and how his diagnosis changed their relationship. Education really is power and the parents of past generations---like my mom---did the best they could with what they knew at the time. I'm glad your daughter got the diagnosis earlier in life and is doing well now.

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    2. So glad your daughter is doing well! My grandson wasn't officially diagnosed until he was a pre-teen. His folks tried different therapies that were designed for kids with learning disabilities but nothing made a big improvement. I think underneath it all they didn't want to hear that it was autism, but now they're his biggest advocates. And he's embraced it too. He proudly wears his school's t-shirt that says "Powered by Autism". There were, and still are, bumps along the way. He takes meds. for anxiety and in his last year in high school he had a seizure, so he takes a med. for that also. But he remains cheerful and optimistic, so there's hope.

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  14. your reasons for attending these lectures were brilliant. And the lecture was interesting by just reading this post. We used to have this type of lecture at one of the Smithsonian bldgs and my neighbor who was retired long before me always wanted me to attend. But of course I was unable being that I was still working during the day. She would say when you retire this is the first thing we'll do. But she passed and I moved. So I guess I wait until I'm living in a CCRC :-)

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    1. See if your local library books lecturers. Ours does but not as often as we have them here. Lots of times they are the same people giving them all over town as all senior citizen halls share resources at least in our area.

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  15. What a fascinating topic and comments. Labels can hurt or help the affected individual and I'm glad that Neurodiversity is a label that expands support for those who fall outside the middle of the bell curve defining mental health. In hindsight, each of my parents grappled, one with autism, the other with CPTSD. Each expended too much energy keeping up with 'normal' appearances, at some cost to their kids. To add to it, 3 neurodivergent children had them so frustrated!. I now wear my neurodivergence with pride but for decades I blamed myself for not fitting in. My parents' struggled to fit in to much stricter norms in the 1940, 50, 60's. My siblings and I immersed ourselves in the hippie generation which gave cover for neurodivent kids who yearned to break out and be themselves.

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    1. I go back to the adage that when we know better we do better which applies to both individuals and society at large. Thanks for sharing your story here. Long time no see!

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  16. I'm a recent reader of your blog. I enjoy your writing, and the various topics you cover.
    Both my daughter and grandson are neurodivergent. My daughter wasn't diagnosed until she was an adult. She has both ADHD and dysgraphia. Her school years were difficult and though I tried to find some assistance, I was always told her difficulties (that we now know are due to the ADHD) were my fault as a single parent. I wasn't strict enough, I was too strict, I didn't spend enough time with her, I spent too much time focusing on her...blah, blah, blah.
    Not being diagnosed brought on many other issues: depression and anxiety among them. She's been working with a psychiatrist and a psychologist for several years, is medicated, and the strides she's made is amazing to me. She still has panic attacks and depressive episodes but her ability to manage her life and her son's is so much better.
    My grandson was diagnosed with ADHD at the age of 4, and recently was diagnosed as autistic as well. He'll be 7 soon. He has sensory issues, too many people, too much noise is very difficult for him. But he's smart as a whip especially when it comes to topics he's interested in. With medication, help from an educational assitant and lots of scripting/practice he is doing well in Grade 1. His mom is his biggest advocate and I'm hopeful his experiences will be much different from hers.

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    1. Wow, there are a LOT of hurting adults who struggled before much was known about the conditions under that umbrella up at the top...and still do. I know a little bit about dysgraphia because my husband's stroke left him without the ability to write. We were told it was a transmission issue where the brain and hand worked but the message to write what he wanted got lost in transmission in between the brain and hand. You could see the panic in his eyes when he'd try. That had to be really hard for a kid.

      Thanks for adding your story here and welcome to my blog.

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  17. I have an older sister with severe dyslexia and school was just hell for her, as she was assumed to be either lazy or stupid (or both!). One of the transformations that happened during my decades teaching college, largely as a result of the Americans with Disabilities Act, is that educators now had a responsibility to provide "reasonable accommodations" for those with disabilities, including varieties of neurodivergence. It turned out that, when we adopted more flexible teaching strategies that drew on a variety of different ways of learning, it was better for just about all students.

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    1. It all goes back to when we know better we do better. It's just sad that science and the education system didn't know what was going on back decades ago. I'm 83 years old and in my heart and head I know I'm not stupid those childhood labels stick with you. One of my neighbors has a son who is dyslexia and it was just after the A.D.Act first was making it rounds his school let him listen on tapes much of the reading material required. It was not well received by the other kids and parents who thought he was given special privileges.

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  18. One of the things my husband did after retiring was work as an aide at the high school in what they called content mastery. It was part of special ed. Kids would come at designated times from their regular classes for help with tests, assignments, etc. Some kids needed things read to them because they were auditory learners and some kids needed other approaches to help them understand. Years later we would run into these kids that were now grown up and successful in life, whether it was in a job, or in being a parent, or both. They always were so appreciative of his help. It was very gratifying.

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    1. People who show interest in helping kids are appreciated. I saw that in my niece when we'd be out for lunch in her neighborhood. Students she had years ago would always stop her to talk. I'll bet your husband enjoyed helping as those kids.

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    2. He really did. Especially the ones who'd been told they were "stupid" and realized they weren't. Just different.

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  19. This was an interesting read. I have one blog reader who describes herself as 'on the spectrum,' and this helped me understand what she means. Some characteristics are obvious from her writing, and her description of her days, but she functions perfectly well, and clearly has come to terms with it. Not everything is a spectrum, of course; the sex/gender confusion is one example. Sex (male/female) is biologically based, but gender is one of those areas where every sort of social, environmental, and emotional forces can come into play.

    I've not bumped up against the concept of 'neurodiversity,' but it's a good one. People's increasing understand of that sort of reality reminds me of the days when obsessive-compulsive behavior finally became understood as more complex than washing one's hands a hundred times a day. Many addictions are related, however tangentially. A close friend finally was able to stop her compulsive eating and lose weight when she understood the compulsiveness in her behavior, and was able to change it.

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    1. One day the fact that the sex/gender confusion is biologically based will be universally accepted---at least another generation away more research data to back it up. Right now that acceptance is going through growing pains because so many people think of it as a sin.

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  20. The person who moved me the most when speaking about having dyslexia is Max Brooks, the son of Mel Brooks and Anne Bancroft. He said that his mother fought the school district and was instrumental in his getting an education. He is a successful published author (mostly about a zombie apocalypse, but I still plan to read him despite that!) He was also hired by the US government to help train people about apocalypses, according to Military.gov. Fascinating guy who is seriously worth a Wikipedia search.
    Nina



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    1. Interesting! I never heard that story before. I also find it fascinating that military would study the fiction books to help them understand how people might act in a real apocalypses....fascinating and scary that they think it's a real enough possibility to spend money on it.

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