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darkobssessions · 4 years

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Coping Tips for Autistic Women

I am compiling a list of resources for aspie women along with tips to manage symptoms and navigate the world. Regretably, most of my personal experience comes from living undiagnosed and unaware about this for the last 27 years. There was a giant elephant in the room with everything, and I have only recently worked it out. This means that most of my habits prior to this point were ones attempting to cope with a giant unknown, the limits of which were unclear. But they more or less worked, because, as I am realising, there’s always been something they are attempting to address.

With other diagnoses and ways I attempted to explain and understand my difficulties, there were finite causes and treatments. I should have been improving if I tried x, y, or z. And I did improve my symptoms in many ways, but there was something missing from the picture. That is that autism is my personality, my state of being, how I process and view the world. And no tool, medication, process or treatment was ever going to change who I really was. Being misdiagnosed (or being missed and failing to receive the autism diagnosis) means that I have been trying to correct something that you cant ‘correct’, and shaming myself for something fundamentally me.

Some of the tips I learned over time, from how I am as a person, without the framework of reference of neurodivergence or autism:

Sensory:

My sensitivity has always been a big waving flag. I felt and saw things others didn’t. I felt more deeply. I sensed the microeffects and changes in everything. I responded harder and faster to any chemical, environmental shift, any positive or negative event, As we all do on the spectrum, we attempt to navigate our sensory environment. And we come up with coping mechanisms, good or bad, before or after we realise we are on the spectrum. For me this was a strong aversion to the things that upset me, that disturbed my senses. It was an orienting of myself in a way to avoid the disturbances, going inwards, withdrawing and even shutting down. I learned that I could not and did not want to handle crowds, loud places, supermarkets. I lived in a giant simulation attempting to minimise and avoid as much as possible the things that hurt. I learned that I was extremely sensitive, no one else seemed to be, and I just had to manage it. Since discovering autism in the last weeks, I am able to embrace the fact that sensory overload is a thing, and I really do feel pain in my body when things are too much and too loud, and just wearing earplugs has mitigated so much of this. I was gas lighting myself before about feeling a certain way because there was no explanation, that I was aware of anyway.

Physical:

I have had so many problems over the years, since I was a young girl. I used to get food poisoning symptoms really easily. I had hidden allergies. I remember a lot of my childhood spent doubled up with stomach pains, or having a fever. My family didn’t know any better and fed me and treated me as they did every other member. I was not the same, I did not feel the same, but I took it all in. By the time I was in my early teen years, I had cemented my aversion to certain foods, taken the only control I had at the time against an encroaching and controlling mother and turned it into anorexia. I avoided things I didn’t like, again, and set up a system of control that made more sense than the gaping wounds and confusion within me. Starvation triggered bulimia. And a viscous cycle of malnourishment and dysregulation unfolded. I didn’t learn until many, many years later that my system was so sensitive and damaged that if I tried to go back to how I used to eat as a child, I would get terrible symptoms. So my coping tips as I have healed from the eating disorders and become more aware is to figure out what the triggers are, what hurts, and to avoid it. This along with adding in nutrient dense foods and working on the deficiencies has done wonders for me. I’ve done tremendous work on my autoimmune conditions, gut problems, sensitivities and inflammation levels and the difference is like night and day. That I can induce psychotic symptoms by deviating or introducing foods I am intolerant to is no joke. The tip I can share is elimination diets truly do work, the keto diet is recommended, and eating the carnivorous way saved my life. My eating disorders for almost 15 years INCLUDING the 7.5 years I was a vegan, mostly high raw and fruitarian depleted my nutrients so badly that every symptom was enhanced 100% and I was eating pretty much ONLY food I was actually intolerant to. Ahem, plants, I’m talking to you. The peace I feel, the nourishment and rest on a nervous system level having eliminated them is unreal.

Social:

I have always known I was different, in a deep, visceral way. How the adults in my life answered questions was inadequate. I saw through people and things. I was far too intense and serious. I learned to watch and observe humans and pick up cues so as to attempt to fit in. I spent the majority of my life masking, something I am only now finding out about and unraveling. I kept notes on the human experience, and saved colours, sounds, feelings, because I felt like I couldn’t communicate the truth of myself otherwise. Over the course of my life there have been inexplicable (until now) events. Lost friendships and relationships, strings of broken promises, people not acting on what they say, confusions and miscommunications, and many dangerous situations and predatory bonds. I made what sense I could of it from whatever lens I could find. It was the trauma, it was my soul contract, it was what I deserved, it was being targeted- all close, but not quite within the realm of being so naive, open and fundamentally different as you are on the spectrum. I just always assumed everybody was like me. I had to learn the very extremely hard way that not everyone felt and thought in the same way, nor had good intentions. I still struggle with the fact that humans don’t tell the truth. It is of no relevance whether they secretly know it. Most people are more comfortable with illusions. I always knew this, but the diagnosis gives me a lot more peace around it. It’s allowing me to accept the fact that if I look around the majority of the people I see are not walking around processing and over-analysing everything, feeling sounds, decoding patterns and obsessed with hacking the code of reality. Less pressure that way, and more in the way of what can be viewed as natural interaction on my part. I will solve the mystery of the universe out loud otherwise, and get the blank looks and the discomfort. I have found my people, a tribe of likeminded individuals, I have gathered friends over the years that didn’t run from my weirdness. But I am mostly content to be on my own, knowing that I can only use what is around me to try to convey how I feel and who I really am. And that will probably be a book, a movie or a work of art, much better than a 2pm rendezvous when I can’t stop talking about the hidden signs.

Emotional:

With the intensity of my emotions I have developed borderline personality disorder as a means to cope with being autistic and not knowing. I have been diagnosed with both that and bipolar because I have intense stints of emotions. They come and go in waves, lasting hours, lasting days and weeks. I consider it to be an energy management system to cope with the demands and stressors of modern day living. Creatives always withdraw and hibernate, and come out with new insights and art to share. The way that I feel and view the world is special. It’s at the basis of my writing, what I choose to engage with and how. My emotions make me who I am. I feel intensely, I share passionately about how I feel. I snap, I break, I shutdown, I come out again and I am a bright, shooting star. There is an excited little animal that lives within me and it is the strongest most passionate thing known to man. I thought that my negative experiences or trauma killed it, but this is before I knew it IS me and cannot die. So I have stopped trying to cram these emotions in or explain them. Stopped trying to attribute them to whatever script people were following when they dealt with me. Throwing me into the depressive, anxious, panic stricken, eating disordered basket case category. The missing piece now makes so much sense. The ways I responded to being autistic were coping mechanisms, such as developing a personality disorder, to deal with the pressure. My psyche splintered under the weight. My tip here is in embracing your inner life and world, embracing that you are different, so that all of the mental and emotional acrobatics needed to attempt to explain the issues or fit in can be put to rest.

Spiritual:

Being different and feeling differently means I naturally saw and expressed things in quite a strange way. I was convinced of a secret world to reality, behind reality, living on behind a paper shell, so to speak, that would rip if only I could reach out and tear it aside. That conviction was rewarded as year after year my awareness grew, my gifts multiplied, and the experiences I had revealed to me the hidden hand of god. There was very much design to the universe, a pattern, weaving through all things. And i was a part of it, not some discarded afterthought or simple byproduct that had no place. In the early years, I kept my convictions to myself, nursed them with experience. I died a thousand deaths in dark nights of the soul, crashing against the turf of my ignorance. I broke open, and everything I had been so sure of as a child was revealed to me again and again. I was convinced I had a purpose, I could feel the deep tides of human emotion and motion, could feel into the genetic sequence that had birthed me. I felt like an alien, but that slowly over time the map of my operation was being revealed to me. This is what it feels like so many years later to stand here and find out about being autistic and realise that how I felt in my soul all these years was real, and that I can begin to truly fulfill this mission now, to share my experience in words I know others will understand because they feel the same way too. It was the challenges that I never understood, while the gifts were the reason to stay alive. My message to myself and others now is that there is a point, a reason to persevere and understand yourself more. The suffering reveals so much of the true state of things, so that we can protect our tender hearts and build new things that honour who we really are, our souls.

Resources, movies, literature to follow. I just wanted to share something of a summary now of my realisations since coming home to myself.

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asexual-society · 7 years

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Aspec & Arospec YouTube List Part 2!

Apparently there are a lot more ace youtubers that I missed on the last list…

The descriptions for each channel are pretty much just copied and pasted from their channel descriptions. Unless they didn’t have a description, in which case I just wrote ‘vlogger’.

Please note: All the content of the channels below may or may not reflect the views or opinions of this blog or it’s moderators. Nor is all of it safe for work or free of problematic elements. Please use your own discretion.

Note 2: If your favorite youtuber is not on this list, feel free to add on!

Enjoy!

Aaron Ansuini: A trans ace vlogger who talks about both asexuality, being trans, video games, art, and motivation; Twitter

Abbie Wells: Aspec singer, actress, and vlogger; Twitter, Tumblr, Instagram

Aced It!: We are just a handful of Ace/Aro YouTubers who wanted to make a community to chat! Hang out let’s talk! ; instagram

Ace Ideas: We are a diverse group of asexuals here to share our knowledge, experiences, passions, hobbies, and stories surrounding our asexuality.; Facebook, tumblr, twitter

Aceland Alexander Kent: Transgender-Male, Homoromantic, Aceflux-Asexual musician and vlogger. He used to run the queer information channel, Questions and Queeries ; Twitter, Instagram, Tumblr, BandCamp

Ahsante the Artist: Artist, Storyteller, Harvard 2015. A place for educated discussion, spirited lifestyle, cultural critique, creative reflection, and the silly goings on in the life and mind of Ahsante; website, Tumblr, Twitter, Instagram, Facebook, Portfolio website, Patreon

Androigynous: Hey guys! Andie here. Your resident cat girl. You’ll find gameplay, art, unboxings and feline vlogs! There’s something for everyone. ✨; instagram, facebook

Antastesia: A French asexual feminism/lifestyle/travel/vegan vlogger; Tumblr, Twitter, Instagram, Facebook, professional website

Anthony Pero: Posting funny videos and skits with the purpose of making people laugh. I like to focus on anything from serious topics like depression to goofier subjects like my Facebook newsfeed. My channel also consists of parodies of people I know, things I see, or random events that I think need to be spoofed; Twitter, Facebook, Instagram

ArtByFlan: Sometimes I draw things. Sometimes I record myself drawing things. Sometimes I post videos of myself drawing things here!; tumblr, deviantart, facebook, twitter

Asexualise My Asexual Life: Asexualise Your Asexual Life: Empower And Enhance Your Asexual Life. Giving Asexuals a voice in the world. It is my mission to give asexuals a voice in the world; to empower other asexuals to be comfortable and confident with their asexuality; and to give insight into my colourful asexual life, to enable others to better understand their own and to know they are not alone. I want to educate others about asexuality, so that in the future, all asexuals can live in society happily.; twitter, facebook

Autistic Asexual fangirl Adventures: just a vlog page, random ramblings and adventures of a autistic asexual and geek who wants to try and make the word a better place.; twitter

BaptismOnFire: My name is Jack, I love horror and all things creepy. Here you’ll find videos about nightmares, monsters, creepypasta and generally spooky things! Remember to watch the skies, stay paranoid and trust no one…; Twitter, Tumblr, DeviantArt

Blue Phoenix Ace: American ace education vlogger. My goal is to educate people about Aromanticism and Asexuality, because maybe it will help someone learn the truth about themselves before they hit the age of 37!; music channel, Website, Soundcloud, Facebook

BreakfastAlexis: An asexual artist who creates animatics; tumblr, twitter, redbubble

Brian Langevin: Occasional videos discussing asexuality and life in general! This channel also hosts an archive of Everything’s A-Okay - a project Brian Langevin started alongside the project’s writer, Amy Liang, to bring greater visibility to asexuality; Twitter

Channel for Positivity l Understanding l Justice: Demisexual Korean-American motivational vlogger. Stay woke. See BOTH Sides. Social Justice. Bite-Sized Politics. Build more POSITIVITY :D Pragmatic Utopian. Diversity. Understand Humans & Relationships. Embrace Progress.; twitter, tumblr

Christi Kerr: This channel is a mix of whatever I like to do, which mainly includes vlogging but could include any number of things; Twitter, Tumblr, Facebook, SnapChat, Instagram

Christine Sydelko: The youtube channel of vine-star/popular internet comedian and her boyfriend; Twitter, Instagram, Snapchat

Clara Unleashed: Denmark based asexual/biromanic vlogger. They also run the aspec focused youtube channel, My Ace Experience ; Instagram, Twitter, Tumblr

Cultlleader: Asexual Vlogger; Instagram, twitter

curlybobofelia: UK based asexuality Awareness, LGBTQ, Mental Health Awareness, Disability Rights, Child Rights & Anti-bullying Advocate vlogger; Tumblr, Twitter, Facebook, Instagram

Dylan Tyler: I’m Dylan, and I suck at writing the intro things, so let’s just eat a lot of popcorn together and do an unhealthy amount of binge watching. Subscribing makes it easier to find me when you’re up for binging :) ; instagram, twitter

ElectraSnow: Demisexual artist, makeup artist, and special effects makeup expert: Twitter, Etsy, Tumblr, Facebook

Elisa Hansen/Maven of the Eventide: Voraciously vivacious Vampire Reviews. The Maven peers into the realms of the creatures of the night for a humorous analysis of vampires in media and pop culture; Twitter, Facebook

Embly: 18 years old, also the cutest small potato in the neighbourhood, wine mum, also very salty and nostalgic over a jam sandwich she lost over 2 years ago; Twitter, Instagram

Estelle Z: Music, vlogs, scrapbooks, and whatever else I happen to fancy; Tumblr, Twitter, Soundcloud, Facebook, Patreon, Gumroad

happy fish: Autistic, mentally ill, queer, nonbinary person vlogging about my life and trying to pretend I know how to function as an adult.; etsy, tumblr

Heroic Pages: Canadian, lover of books, films and imagination…and also a huge nerd!! Critter! Very much an unapologetic introvert (INTJ) ACE hermit cat lady den mother!; twitter, instagram, goodreads

JakeMale TV: I do Comedy sketch videos but also Vlogs! I share my life experiences with you so you can laugh at my mistakes. I have funny moments in my life, come and join me living my life. Click on ‘SUBSCRIBE’ to be told when I upload a new video! I advice it, MY LIFE IS WEIRD! I also do a University Advice series!; twitter, facebook, vimeo

Jeff Miller: Demiromantic/demisexual transmasculine musician, actor, and all around content creator; Patreon, Twitter, Facebook, Instagram, Tumblr

janeil darnell: An aroace vlogger; twitter

jennaclarek: Heteroromantic asexual. I just graduated college with a BS degree (get it) in Audio/Video Production. I’m also obsessed with Taylor Swift, strawberry cake, and musicals. I mostly make videos about books, but I also make videos about my life, my faith, and the other things I enjoy!; goodreads, twitter, tumblr, instagram, bandcamp

Jourdann: A channel that’s all about ships (the tv kind), college life, and artsy videos; Twitter, Tumblr, Instagram

kaihugstrees: Non-binary asexual. I make videos every week about my life, from travel vlogs and challenges to videos about mental health, disability, and queer topics; Twitter, Tumblr

Kelly McCraw: Akoiromantic Asexual vlogger

Marshall John Blount: Just an Ace guy trying to make it through life…This vlog will be about my everyday life and Asexual awareness…..I hope y'all will tag along on this interesting journey with me 💜💜

marsisnotcreative: Brazilian vlogger. Does covers of songs, videos chatting about stuff i enjoy, giving opinions, rants about some things that bother me, pseudo-artsy videos; twitter, tumblr, instagram

megathornberryy: Aspec book reviewer and vlogger; Goodreads, Twitter, Instagram

Milo Stewart: My name is Milo and my pronouns are they/them. Gender confused college kid named “YouTube’s most controversial trans vlogger” by The Daily Dot; Twitter, Instagram

Mikey Neumann (of Chainsawsuit Original): Ace president of Chainsaw Original and film critic ; Twitter, Website

moonchild: My channel covers a large variety of topics and genres, some of which include asexuality, body modifications, mental health, with the occasional story time or rant video thrown in; Tumblr

Overlysarcasticproductions: Sarcastic, yet informative, summaries of classic and not-so-classic literature and mythology, as well as major historical events! (Red has stated that she is asexual); threadless, cafepress, twitter

Peach The College Girl’s Vlog: Asexual Biromantic gaming channel ;twitter, twitch, snapchat

Phoebe Saturn : i make youtube videos as a hobby and hopefully have a positive impact on your day :] ; twitter

ppusherr: Gender, Sexuality, and Social Issues solved with Positivity and Education; Tumblr

punkygirlontherock: Asexual Canadian vlogger

Ricky Dillon: American YouTube personality and singer-songwriter; Book website, Twitter, Tumblr, Instagram, Spotify

Sally Le Page: Grey-ace UK vlogger. Aims to bring science further into popular culture by making science videos that make you laugh, make you feel and make you think; Website, Twitter, Facebook, Instagram, Flickr

sara elizabeth: Demisexual American make-up vlogger. i’m sara and i’m sorta obsessed with makeup and musicals; twitter, instagram

Sebastian Columbine: A horror and surrealist, filmmaker and artist in Los Angeles, California. This youtube channel surrounds Sebastian’s unique style, both in terms of fashion and beauty, as well as their lifestyle and artistic endeavors; Professional blog/website, Instagram, Twitter, Facebook, Patreon

skellydun: life is an experience. here are some of mine; Tumblr

SixFootNerd: British, six foot and a total nerd! Just someone talking about Movie/Tv News, Events, Reviews and Discussions; Twitter, Tumblr

Sophie Foster: Demisexual/biromantic fashion, makeup, and lifestyle vlogger from the UK; Tumblr, Twitter, Instagram

SoulOfEbony: I wanna scribble cartoons for a living and make people smile.; tumblr, twitter

Taye Nic: I’m just an 20 year old college student who is trying to live for the first time:) Lol, I just got into makeup! I also love making things, broadway, Disney, my boho chic style lol and NYC more than anything else! I also love to make friends so stop by; twitter, instagram, pinterest

The Asexual Goddess: Ace and in your face. I’m actually an introvert so i don’t know how that works

TheGothicAlice: Asexual Aromantic artist, Manic Panic dyehard, horror junkie, cynic, and part time model; facebook, Etsy, Tumblr

TheMysteriousMrEnter: Asexual/Aromantic animation reviewer; DeviantArt, Tumblr, Twitter, TvTropes, Facebook,

Vivi Addams: Feel free to hang around for a while, watch some Lego animations, hopefully subscribe… Enjoy!; Tumblr, Twitter

#asexual #masterpost #aaw2017 #asexual awareness week #youtube #ace representation #aspec #arospec #list #grey asexual #aromantic #demisexual #youtubers #video #mod britt #long post

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ralphmorgan-blog1 · 7 years

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Could stem cells offer hope for autism?

Rockledge, Florida (CNN)Gracie Gregory smiles beneath her brilliant blue eyes. She's sitting on her mother's lap, next to her older sister, Ryleigh, who boasts about Gracie being "very sweet and kind."

It wasn't always so. Just a couple years ago, Ryleigh, 11, was scared of her sister when she'd throw tantrums and screaming fits.

"She would've fought and kicked," Ryleigh says, noting that it wouldn't have been possible to sit like this next to Gracie.

Why was she scared of her sister?

"Because of the kicking."

Gracie, 7, interrupts: "I don't even remember it."

"We do," says her mother, Gina Gregory.

Gracie has autism, a condition that affected nearly every aspect of her family's life after she was diagnosed at 2. But a new study is offering hope for the Gregorys and families like them.

Gracie was one of 25 children who took part in the first-of-its-kind study at Duke University in Durham, North Carolina. The goal: to see whether a transfusion of their own umbilical cord blood containing rare stem cells could help treat their autism.

The results were impressive: More than two-thirds of the children showed reported improvements. A larger second trial is underway, one its researchers hope will lead to long-term treatment for children with autism.

Skeptics say there are too many unanswered questions to get excited. Even Duke researchers acknowledge as much. The initial trial, published Wednesdayin the journal Stem Cells Translational Medicine, was a safety study, not a controlled, double-blind study with definitive proof of positive results. This study was open-label, meaning everyone -- the doctors and the families -- knew that the therapy was being administered.

But for the Gregorys, the change in their daughter has been monumental.

Gone are the days of Gracie throwing fits in long lines at Disney World or during dinner at restaurants. When a tantrum intruded on family outings, her mom and dad wished they had T-shirts that said "My kid has autism" to ward off judgmental stares.

During autism therapy sessions, Gracie would kick, scream, spit and hit at her occupational therapist. "It was horrible to try to get her to sit there," her mother says.

Even just brushing her teeth or combing her hair could set her off.

Gracie, then 5, was on the mild to moderate autism scale, but her parents say the disorder consumed about 75% of their daily routine. After her participation in the study, that figure has been reduced to a mere 10%.

On a scale of 1 to 10, they rate her improvement around an 8 or 9; it's been that dramatic. She's even begun attending a "regular" school and thriving there, something her parents never thought possible. She'd been in various specialized school programs, and nothing was the proper fit.

Are Gracie's changes a result of the cord bloodtransfusion stimulating her brain? Or did her brain just mature as she got older? Could it be that her parents were subconsciously determined to magnify her improvements, given all their family had been through?

Those are questions the Gregorys still ask. But they do know that their daughter's transformation appeared to begin about six months after her transfusion in January 2015 and has continued ever since.

Her father's favorite adjustment is her newfound affection. Instead of shunning hugs, she now welcomes an embrace.

"We will say we don't think it's cured her. You still see some of the small idiosyncrasies that she does have," says her father, Wade Gregory. "But again, I think it's supercharged her learning curve. It's pushed her to do things she normally wouldn't do."

Her mother adds, "She got better, and we're just thankful for that -- whether it be the stem cells or not. We're just thankful for what changes have happened."

Billions of cells

Dr. Joanne Kurtzberg shows off a freezer deep inside the bowels of the Carolinas Cord Blood Bank at Duke University Medical Center. Known as a thermogenesis freezer, it stores up to 3,640 units of cord blood -- left over from babies' umbilical cords and placenta -- at minus 196 degrees Celsius.

Each unit is designated by labels with specially designed adhesive to withstand extremely cold temperatures for decades. There are 14 cord blood freezers in all.

It is the cord blood in those freezers -- stored or donated by parents in case a serious illness develops-- that's at the cutting edge of this research.

Kurtzberg, who heads the Robertson Clinical and Translational Cell Therapy Program, has teamed up with Dr. Geraldine Dawson, director of the Duke Center for Autism and Brain Development.

Both saw a great need for medical advances to help treat children with autism. An estimated one in every 68 children in America has some form of autism spectrum disorder, according to the Centers for Disease Control and Prevention.

About 30% never learn to speak, and many children even with early behavioral interventions still struggle to adapt. There also are no FDA-approved medications that improve the core symptoms of autism.

"I was very interested in collaborating with people here at Duke who could offer medical approaches that could enhance neuroplasticity, or the brain's ability to respond to treatment," Dawson says.

That's where Kurtzberg comes in. Over the past two decades, she had seen children with inherited metabolic disorders be treated with cord blood after receiving high doses of chemotherapy.

"We've been able to show that with some of these diseases, a cord transplant rescues them from death and also improves their neurologic outcome," she says.

She began wondering: Could cord blood help other children?

About a decade ago, her laboratory began clinical tests of children with cerebral palsy whose parents had banked their cord blood. Again, they saw positive results. And in some of those children who had autistic tendencies, they saw autistic symptoms improve. Another spark went off: What if they tested cord blood specifically for autism?

The safety trial began a little over a year and a half ago. Not only did it find cord blood to be safe, but 70% of the 25 children, age 2 to 6, had behavioral improvements as described by their parents and tracked by the Duke researchers. The research is largely funded by a $40 million donation from the Marcus Foundation, a nonprofit created by Home Depot co-founder Bernie Marcus.

The children traveled to Duke three times over the course of a year. They underwent a series of evaluations such as autism assessments, MRIs and EEGs to track their brain activity. On the first trip, the children received the cord blood infusion along with the intense evaluations. Each child received 1 billion to 2 billion cells, given through an IV in their arms or legs. At six months and then a year later, the children returned for more tests and observations.

"Some children, who were not speaking very much, had big increases in their vocabulary and their functional speech," Kurtzberg says. "Many children were able to attend to play and have meaningful communication in a way that they weren't before. Some children had less repetitive behaviors than they did when they came onto the study."

Adds Dawson, "The study was very encouraging. We did see positive results. However, it did not have a comparison group, which is very important in establishing whether a treatment is actually effective."

Both researchers can't stress that enough: that although they're cautiously optimistic about the results, they want the science to play out. They are now in the midst of the definitive trial on whether cord blood can treat autism -- a double-blind, placebo-controlled trial involving 165 autistic children, ranging in age from 2 to 8. The FDA has oversight of the study.

During the phase II study, the children on their first visit receive a cord blood infusion -- either their own or from a donor -- or they get a placebo. They also undergo a battery of assessment tests and brain monitoring.

On their second visit six months later, the children receive a second infusion with whatever preparation they did not receive the first time and undergo more evaluations. The order of the infusions is not known. Researchers will monitor them for the next year for any sign of behavioral improvements.

It's known as a crossover trial, in which each subject gets the treatment and the placebo but in a different order. Researchers say it would have been nearly impossible to find participants if parents knew that their children might not receive an infusion.

How groundbreaking would it be if the trial shows similar results to the safety study?

"If we can show that receiving an infusion of cord blood is more effective for improving social behavior than the placebo," Dawson says, "then this will be game-changing."

Kurtzberg adds, "We'll be extraordinarily encouraged if the second trial shows that the cells benefit children when the placebo does not. We will consider that a breakthrough."

Both researchers were shaped early in life by the struggles families face raising autistic children. As a teen, Dawson babysat twins with autism who lived across the street. "It was just an inspiration to devote my career to improving the lives of people with autism," she says.

Kurtzberg was similarly affected. When she was a junior in college, she would visit a girl with severe autism and play with her as a means of behavioral intervention. "The family still writes to me," she says.

It is for this reason -- their longtime devotion to families raising children with autism -- that both issue a heap of caution. Although they're excited about the results of the first study, Kurtzberg says, "we don't want to mislead people and claim it's working before we have definitive proof."

Adds Dawson, "It's important for parents who might hear about cord blood as a potential treatment for autism to know that we are working very hard to know the answer to that question. We aren't there yet."

Cautious optimism

Kurtzberg has a hypothesis about what may be happening: that certain immune cells within the cord blood are crossing the blood-brain barrier and altering brain connectivity while also suppressing inflammation, which may exist with autism.

"I feel more confident now because of our (cerebral palsy) study, which preceded this study and does show benefits," Kurtzberg says.

Dr. Arnold R. Kriegstein, director of the stem cell center at the University of California, San Francisco, says that he hopes there will be breakthrough treatment for children with autism but that much more needs to be known before this will become a reality.

"One has to be very careful when interpreting results that haven't come from properly controlled, double-blind studies," he said. "All I can say is that it would be wonderful if this treatment was effective, but one has to be very cautious before reaching any conclusions."

Even without a placebo effect, he says, many factors could have resulted in an improved outcome in the first study: The growing children could have acquired skills simply through maturation, possibly enhanced by occupational therapy, and their parents may have clung to positive gains, creating a biased outcome.

Thomas Frazier II, chief scientific officer of the advocacy group Autism Speaks, said the results of the initial study were encouraging but that more work needs to be done before the public gets excited. "It's too early to get hopeful. Too early to change behavior," he said. "I hope people don't go out and spend money on banking cord blood as a result [of this trial]."

Kriegstein of UCSF also wonders whether cord blood is really stimulating cells in the brain and creating new connections. "There are so many unanswered questions about what might be going on here, it becomes very difficult to evaluate the proposed mechanism," he said.

"The question remains: How do these cells injected intravenously wind up in the brain, how do they target the appropriate brain regions, and what are they doing that could improve brain function?"

'I forgot how bad it was'

An 8-year-old boy with autism sits at a table in a room within Duke's Center for Autism and Brain Development. Clinical research specialist Michelle Green watches from behind a two-way mirror. Two cameras in the room feed computer monitors, allowing her to further analyze his behavior.

Dr. Lauren Franz, a clinician, works with the boy in the room.

"What kind of things make you feel threatened or anxious?" she asks.

"Like when I'm done with a test," the boy says.

"How does it feel when you're frightened or anxious? How does that feel?"

"Like pretty weird," he says.

The boy is participating in the second trial, and he's returned for his six-month assessment and second infusion. Researchers don't know which infusion he received first: the cord blood or the placebo.

But they track, record and monitor the slightest of details. Although it might seem like an innocuous conversation, researchers will compare the results with those of his first visit and any follow-ups. Was he able to sit still at the table before? Could he articulate his thoughts? Did he talk before the study? Has he improved?

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At the Gregorys' home in Florida, Gracie's parents remember when she went through those same tests. The best investment they ever made, they say, was the $2,000 spent on banking her cord blood. At the time, it was just a precaution; her autism diagnosis didn't come until three months after her second birthday.

They know the desperation of families raising a child with autism -- of longing for their daughter to have a shot of normalcy in life. "You can't quantify it. You can't measure it. You want to see your child succeed," her father says.

Mom and Dad recently watched old home videos, of Gracie singing inaudibly, of her covering her ears when "Happy Birthday" was sung for her third birthday, of showing no emotion on Christmas when she was 2. "I forgot how bad it was," her mother says.

They hope the current study leads to similar successes -- and results in breakthrough treatment for autistic children everywhere.