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mr peabody

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What one man learned when he treated his autism symptoms with psilocybin

"That trip was like an '80s movie starring me. I saw what my life could be like, without computers and all that rubbish. It gave me the most hope I've ever known."

The morning after his first big trip with psilocybin truffles, Alyx came downstairs beaming and looked his support worker straight in the eyes. In the seven years Claire had been working with him, he'd never been able to meet her gaze before. It was why he'd come to Amsterdam to take psychedelics.

Diagnosed with autism at age five, Alyx, who is 26 now, had been largely housebound since leaving high school near Oxford, in the UK. His social anxiety was so bad that he couldn't talk to the customers for his small computer repair business, so his mother handled them while Alyx only dealt with the machines. The rest of the time he was gaming, up to twelve hours a day. "I spent my whole life isolated and alone," he tells me. "I'd wake up, run computer stuff all day, game, go to bed, and then do the same thing the next day. I didn't realize I was stuck in that loop."

Alyx also found it impossible to speak to people, to talk on the phone, to leave the house by himself. He couldn't look at his mother, he had acute anxiety, he spent 12-16 hours a day, every day, online. He was in specialist schools until he got himself kicked out deliberately at 16. Alyx also, as he tells me, couldn't understand or experience emotions clearly, found body language inscrutable, didn't understand subtext such as sarcasm.

Then, towards the end of 2016, Alyx read a couple of stories about psychedelics and autism, in an article about a clinical trial of MDMA, and a guy on Reddit who said magic mushrooms had helped immensely with his social anxiety, which filled him with hope. "I told Claire, 'okay, we have to go to Amsterdam, because it's the only place they're legal, and we have to take magic mushrooms' and we did."

Actually, they used truffles. Legal in the Netherlands, they are the root system of the mushrooms, and Claire was there purely to support Alyx while he tripped (she owns and runs a company providing support to people with autism), taking a big professional risk. Neither want to use their last name as a result. They spent months researching the ins and outs of psychedelic therapy, and found that there was a fairly simple protocol developed in clinical trials. Two substances, MDMA (the recreational drug most commonly known as Molly or ecstasy), and the psilocybin (the psychedelic substance) in magic mushrooms, share similar therapeutic traits, says Ben Sessa, a clinical psychiatrist who has researched the two substances at Imperial College, London. "They are both equally, interchangeably useful," he says.

In the recently published MDMA study Alyx read about, 12 participants on the autism spectrum had two all-day sessions, with either MDMA or a placebo, in a comfortable therapy room with music, art, and flowers. If they wanted to talk, or dance, they could do that with the two therapists who were with them throughout; if they wanted to kick back with the headphones and see where their minds went, that was all good too. There were regular therapy sessions before, between and afterwards to make sense and meaning of their drug experiences.

The study was tiny, more a proof-of-concept than anything, but the results were promising. For the eight autistic participants given two sessions with 75 mg, 100 mg or 125 mg of MDMA, social anxiety levels reduced by 50 percent. Significantly, they stayed this way when measured again six months later. The placebo group had much smaller reductions as measured by the Liebowitz Social Anxiety Scale (a system created by a psychiatrist to assess what role social anxiety plays in one's life) until they had further sessions with actual MDMA and saw similar improvements.

The study was based on the doctoral work of co-investigator Alicia Danforth, who previously worked on a study of psilocybin for anxiety in patients with terminal cancer. She decided to investigate the social experiences of autistic adults taking MDMA recreationally. Of the 100 she surveyed, around 90 reported better social communication and increased empathy and connection.

Danforth acknowledges that her findings are preliminary. "We hope that the good safety profile and encouraging reduction in social anxiety symptoms will inspire funding for new and larger studies," she says. "We're looking forward to sharing what we learned with other researchers."

It's important to note that this type of treatment shouldn't be tried at home without supervision. "This study was done in a controlled clinical setting in conjunction with intense psychotherapy," says Christina Nicolaidis, professor of Social Work at Portland State University and editor of Autism in Adulthood, and unaffiliated with the study. "It should not in any way be taken as a reason to try using MDMA to treat social anxiety outside of a clinical setting," she says. It's an interesting line of inquiry that deserves further research, but there are many steps needed before it can be considered as a potential treatment."

Claire's decision to support Alyx therapeutically, outside of a clinical setting, was incredibly difficult. "Alyx was so set upon doing it by this point, so passionate about it, that I could tell it was something he was going to do with or without me," she tells me. "He was a consenting adult, he'd done his research. I wanted to make sure that if he was going to do it, he'd be as safe as possible." They'd also done some prep work ahead of time and throughout the process: They shared everything with his parents, social workers, and clinical psychologist, who organized a mental capacity assessment for Alyx as a precaution.

The first trip Alyx took, with a small dose of truffles they bought in a smart-shop near their Airbnb in April 2017, dissolved into a four-hour giggling fit. Claire says it was the first time she'd seen him genuinely laugh. "True, emotional, proper laughter. He was so much more animated, and could talk more fluently."

A few weeks later, back in Amsterdam, he tripled the dose to 45 g, which would blow the roof off for most people. Alyx felt like it "it installed the ability to feel emotion." A couple of hours in, he was listening to a movie soundtrack when the emotion in the music suddenly became available to him, like a switch had been hit. Looking at Claire, he could read the feelings in her face like he'd never been able to before. "It was just tears, for hours, that I was able to do that," he says. "Everything just flowed naturally, and I didn't have to think about it at all."

The important thing is that he could still do it once the trip was over. Claire had spent years trying to help Alyx understand what he called "people stuff," conversational inflection, facial expressions, dual meanings. "He didn't understand emotion at all, and so he didn't have the language to express what he was thinking and feeling," Claire says. "But the psilocybin somehow gave him the skills to do it. He was suddenly able to empathize with other people, and have full conversations."

Clearly, there are differences between Danforth's trial and what Alyx did. For starters, although she has a degree in psychology with a masters in autism, Claire is not a psychotherapist. However, they had the benefit of a very close relationship forged over years of constant contact. Alyx is adamant that he couldn't have done it without her.

Again, while MDMA and psilocybin are different drugs, there's a large overlap when they're used for therapy, according to Albert Garcia-Romeu, a research associate at Johns Hopkins University who led a study giving psilocybin therapy to smokers, and found that 80 percent had quit six months after the trial ended. "They're different beasts, but I think they can work towards the same end," he says, adding that similar mechanisms include "helping to promote therapeutic rapport, enhancing pro-social feelings, reducing fear and anxiety related with revisiting past trauma, and improving mood."

Sessa, who is leading the latter trial at Bristol University, tells me that the effects of MDMA for his patients have been surprisingly similar to the classic psychedelic experience. "They've all reported more of a kind of mind-blowing peak experience, in which they talk about 'I can see the light, I can see my problems in a new way."

Alyx's peak experience took place in a Delorean park at sunset overlooking a futuristic cityscape. It came after he'd spent an indeterminate length of time in a state of "no self, no environment," your standard ego death. "The best I can say is that the rest of that trip was like an '80s movie starring me. I saw what my life could be like, without computers and all that rubbish. It gave me the most hope I've ever known."

Garcia-Romeu explains how the two sides of Alyx's big trip, the peak experience (a moment or phase of euphoria) and the ego loss (an intense feeling of connection to the world around you), worked together to allow positive change. "Addictions, whether that be online gaming or drug use, are these kind of rigid patterns that we get locked into. The ego loss clears the way to allow the emergence of these insights. In that way they're very much related." Claire sees Alyx's gaming addiction as a coping strategy. "Social interaction was such an awful experience for Alyx, so you can completely see why it was too stressful, too much to process, so he ran his server and had control, so nothing could go wrong."

When he got back home, Alyx decided to set his house in order. The server went, as did the computer detritus that once covered every surface. In came bean bags, lava lamps, and Christmas lights, transforming the room. "I tried to make it as trippy as possible. Before, my whole existence was maintaining that server, every day. I didn't have a concept of anything else... And now, I haven't played an online game in over a year. All I want to do is sit on the sofa, smoke a bong, and chat."

Danforth emphasises to me that MDMA does not "cure autism." It's crucial to her that this message is clear. And for people with less high-functioning autism this is may not have nearly the same effect. Alyx agrees, but says his psychedelic experiences have changed how he views it. "Before the trip, I used to think it was a disease I could never escape, and that I was sort of sub-human or broken," he says. "Now, I know that I've got problems but I'm doing the best I can to work with them and fix them. I can't ever cure it, but I can make it a lot easier to live with."

His personal relationships have changed dramatically. He's gone on vacations with new friends, and at a psychedelic seminar in London he told his story in front of hundreds of onlookers. He's also blogged extensively about his trips. "I'm a totally different person now," he says. "Before this I didn't really exist, and now I actually have a story to tell, I have a reason to live. There's life where there wasn't. I like telling everyone."

https://tonic.vice.com/en_us/article/pa58xy/what-one-man-learned-when-he-treated-his-autism-symptoms-with-shrooms
 
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mr peabody

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Oh yes, this is EXCELLENT! I'm so glad to see this being researched, without some official scumbags doing their utmost to trip researchers up and bring them crashing down before they get the chance to help anyone with anything, just because of their almost psychotic fear of psychoactives, especially ones they don't have fingers in a tax-pie for.

Alicia danforth seemed nice to me, helped out with some questions for her, think it must have been a year or two ago, got the feeling she was a good egg, so to speak, and not unintelligent:)

I'm autistic myself, the 'classical' or Kanner's variety, and, although I've never for a moment thought it a disease, or that I was in any way dysfunctional [quite the opposite, as a kid, I have to admit, that I saw neurotypicals and felt pity for them, compassion, and sorrow that they could never share in the beautiful intensity and vibrancy of the world as seen through the eyes of an autie or aspie. I still do. Not in a contemptuous way, but it saddens me that whilst there are therapies like this being developed for my kind, there's no such help even THOUGHT OF, for neurotypicals, it breaks my heart.

I was dx'd as a kid, quite early, and I was absolutely squeebly that day :)

'people stuff'...lol, I know what he means there, although 'doing social' or 'doing NT' are the terms I've generally used, still, meaning pretty much the same.
Although I certainly get sarcasm, (actually I can be a right snarky bastard at times, when needs be), or as I've heard it said by other spesh folk 'XYZ left me totally out of social spoons'=D

I did attend two mainstream schools, at primary age but it was obvious they were not for me and neither was I, for them. Just wasn't going to work. And besides,fucking awful. Not even any girls I could like (I've always ONLY liked either autie, MR, aspie, or autie/aspie+MR girls. We just get on better. Ideally Kanner's girls with an intellect to keep me on my toes. I've nothing against NTs, well, not as a group, certain individuals of course, but not because of their neurotype, but, I have, on the other hand, dated off the spectrum, with girls who weren't MR and it has been an unmitigated disaster without exception.

I seem to attract two kinds of people

1-special ed girls of some kind or another, usually autistic, and good, loving people, who I've been happy being with, and made happy in return. Or
2-neurotypical girls, but messed up. I always seem to attract the really, really fucked up psychobitches and total screwballs.

Why? bugger me if I know, but thats how it seems. Spesh and happy, or NT and stuck with bat-shit mental that nobody can cope with in a relationship, just people too fucking broken to be relationship-capable, and generally vicious along with it. To hell with that, I just, now, only date spesh people. Just because the rule and exception ratio is in favour of that, and besides, I'm a lot more attracted to spesh girls than those who aren't.

First secondary was a classic/Kanner's autism school.

I remember still, after a trip up to yorkshire, to see my grandmother, going out for a walk, up the sheep fields, picking wax-caps of various kinds, meadow waxcap (Camarylophyllus pratensis (sp?) formerly in either Hygrophorus or Hygrocybe, large, orange, decurrent gills, meadow lover, very, very tasty) Scarlet hoods (Hygrocybe coccinea/coccineus), bright lurid scarlet blood-red and again, tasty as.

What granny dearest, nor parental units knew, on the other hand, was that I'd been harvesting liberty caps=D

Never tripped before, other than low doses of fly agaric (thats one of those 'autie things' in my case. Always have been a polymath, but especially, and earliest of all, I've been a fanatical mycologist and mycophage; taught myself, according to my grandfather on my mom's side, to read, using mycology textbooks, at 4yo. So mycology is, well, I've a good idea, at 32 now, of what's out there and whether or not I can eat it, and I have since I was tiny :)
Botany came with it, and chemistry as soon as I had the means to scrounge money for the beginnings of a lab; which I daresay, is my pride and joy, my sanctum sanctorum, somewhere I, and nobody else in the house, will go, so no matter how I'm feeling, if I want some privacy, I've got it, among the flasks and still-pots, vac pumps, rotavap etc.)

So, there was a trip (as in visit to) to yorkshire, to a hostel by the name of 'stones' IIRC, planned by the school, taking us up there for about a week, give or take a bit.

There, we kids, we'd organized a midnight feast (trying to organize auties....its like trying to herd fucking cats=D), while I had another item on the menu just beforehand, if you get my drift.

Tripped, fairly hard, comparing with trips on mushrooms later in life, presumably anyone noticing just put things like sensory stimulation, running feet up and down over the sharp edges of a bed frame side and corner etc. down to me being a spazz (no offense to others on the spectrum, I just, well I spend a fair bit of time with an online autie/aspie community, and we use the term of ourselves, take it and own it.)

And over the next week, about the timeframe of the first beginning to getting going properly; I could tell my communications skills, NT-reading skills were improving, so fast, dramatically, I could TELL that it was happening, actually seeing it in myself.

It was...catalytic, is the best way I could describe it; in improving neurological capabilities, social skills, all sorts of similar related capabilities, improving, dramatically and rapidly.

As for Alicia Danforth's statement of MDMA not curing autism....GOOD!!!!!!!!!!!!!

The thought of a 'cure' for autism, its something a great many of us find a nightmarish, repugnant prospect. Because it'd be inflicted on people before we are able to say 'no', or at least to enforce that 'no'. Maybe even in-utero. Likewise prenatal testing; for when prenatal testing for Down's syndrome became available, women were pressured to take doctors up on it, and have the test.

Result? something like 80-85% of Down's people were killed before ever even being born.

Not because they had a disease, not because of something that would bring them lifelong suffering and misery and pain.

But because their mothers were pressured to believe their children were less than the 'perfect' kids they were/are 'entitled to'

A permanent 'cure' would be an abomination. To turn us NT. Jesus no!

There are so SO many of us, who would fight to the bitter end to prevent such a travesty from ever being. The very idea is noxious, horrific, a thing that should not, MUST not ever be brought into the realms of reality.

I know many who, despite there being bits and shits of inconvenient stuff along with our neurotype, sensory overloads, specific textures or sounds that are just...vile, go right through us like rusty nails down a blackboard, but just the same, we do not WANT 'curing'

One cures a disease. One does not cure that which is not a disease. When people suffer from autism, chances are, it's the structure of the environment they are in, being, as a result of a numbers game, NTs being more common, although our numbers are rising and quickly. Not quickly enough, but quickly.

And also, the attitudes of others towards spesh people. The often lack of awareness, That can often lead to suffering. But autism isn't a disease. If the right structures, right opportunities are worked into society, so that we have the same equal chance others do, in life, ensured us. No more, no less,just efforts made to ensure that we have the chances in life others do, such as in employment*, that sort of thing can often result in people being miserable. But when things go right, it is a gift, a precious thing, and I know I for one would HATE to be '; for to do such a terrible thing would strip a man of the very core of his being, of his very essence, his spirit, his being, his soul. Autism isn't something that is 'contracted' like an illness. It is something one is born with, and one as much IS as HAS. Autism is integral to the autie/aspie. Without, then they are nobody.

To flay someone of their soul..I can think of few things more grim and abhorrent.

Limpet_Chicken
 

mr peabody

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Stem cell–derived neurons from people with autism grow differently

Changes in gene expression also hint at how the brains of people with ASD develop differently from those of other people.

Neurons derived from the skin cells of people with and without autism spectrum disorder exhibit different patterns of growth and development, according to a study in Nature Neuroscience.

“Though our work only examined cells in cultures, it may help us understand how early changes in gene expression could lead to altered brain development in people with ASD [autism spectrum disorder],” coauthor Rusty Gage, president of the Salk Institute, says in a press release. “We hope that this work will open up new ways to study neuropsychiatric and neurodevelopmental disorders.”

Gage and his colleagues converted skin cells from eight people with ASD and five developmentally typical controls into induced pluripotent stem cells, then re-differentiated those cells into neurons. During that re-differentiation process, the researchers noticed differences between the two groups. For example, neurons derived from people with ASD grew faster and developed longer and more-complex branches than the other cells. As the cells grew into 3-D organoids, those derived from people with ASD were bigger.

In addition, a genetic program in neural stem cells that includes several genes linked to a higher risk of developing ASD turned on earlier in the cells derived from people with ASD than in the cells from developmentally typical donors. The chromatin during this stage of cellular differentiation was more open in those from the former group, perhaps explaining the differences in gene expression. When the researchers manipulated the cells’ development such that they skipped the neural stem cell stage altogether, the abnormalities disappeared.

“It’s amazing to me that this experiment worked,” Gage tells Science News, adding in the press release that "the study’s findings emphasize the importance of understanding of the early cell biological events that precede the onset of symptoms.”

https://www.the-scientist.com/news-opinion/stem-cellderived-neurons-from-people-with-autism-grow-differently-65313
 

mr peabody

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Processed foods may hold key to the rise in autism

Neuroscience News | University of Central Florida | Jun 20 2019

Eating processed food which contains Propionic Acid (PPA) during pregnancy may affect neural stem cell development in the fetal brain. Excessive PPA reduces the number of neurons and over-produces glial cells, causing inflammation. Additionally, PPA shortens neural pathways. The combination of damaged pathways and reduced neurons may be associated with behavioral deficits associated with ASD.

With the number of children diagnosed with autism on the rise, the need to find what causes the disorder becomes more urgent every day. UCF researchers are now a step closer to showing the link between the food pregnant women consume and the effects on a fetus’ developing brain.

Drs. Saleh Naser, Latifa Abdelli and UCF undergraduate research assistant Aseela Samsam have identified the molecular changes that happen when neuro stem cells are exposed to high levels of an acid commonly found in processed foods. In a study published June 19 in Scientific Reports, a Nature journal, the UCF scientists discovered how high levels of Propionic Acid (PPA), used to increase the shelf life of packaged foods and inhibit mold in commercially processed cheese and bread, reduce the development of neurons in fetal brains.

Dr. Naser, who specializes in gastroenterology research at the College of Medicine’s Burnett School of Biomedical Sciences, began the study after reports showed that autistic children often suffer from gastric issues such as irritable bowel syndrome. He wondered about a possible link between the gut and the brain and began examining how the microbiome — or gut bacteria — differed between people with autism and those who do not have the condition.

“Studies have shown a higher level of PPA in stool samples from children with autism and the gut microbiome in autistic children is different,” Dr. Naser said. “I wanted to know what the underlying cause was.”

In the lab, the scientists found exposing neural stem cells to excessive PPA damages brain cells in several ways. First, the acid disrupts the natural balance between brain cells by reducing the number of neurons and over-producing glial cells. While glial cells help develop and protect neuron function, too many glia cells disturb connectivity between neurons. They also cause inflammation, which has been noted in the brains of autistic children.

Excessive amounts of the acid also shorten and damage pathways that neurons use to communicate with the rest of the body. The combination of reduced neurons and damaged pathways impede the brain’s ability to communicate, resulting in behaviors that are often found in children with autism, including repetitive behavior, mobility issues and inability to interact with others.

Previous studies have proposed links between autism and environmental and genetic factors, but Drs. Naser and Abdelli say their study is the first to discover the molecular link between elevated levels of PPA, proliferation of glial cells, disturbed neural circuitry and autism. The 18-month study was self-funded by UCF.

PPA occurs naturally in the gut and a mother’s microbiome changes during pregnancy and can cause increases in the acid. But Drs. Naser and Abdelli said eating packaged foods containing the acid can further increase PPA in the woman’s gut, which then crosses to the fetus.

More research needs to be done before drawing clinical conclusions. Next, the research team will attempt to validate its findings in mice models by seeing if a high PPA maternal diet causes autism in mice genetically predisposed to the condition. There is no cure for autism, which affects about 1 in 59 children, but the scientists hope their findings will advance studies for ways to prevent the disorder.

 
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For the first time in my life it felt like I was the driver. Certain things I marked as impossible became entirely plausible. Social interaction became more of an intimate conquest to get to know and understand as many humans as possible. My life took an incredible 180 degree turn, and now I find I am able to look at life in a way I never dreamed possible. I self evaluate every week to work on my flaws. I consciously push myself out my comfort zone to feel alive. I have life ambitions now that I’m extremely passionate about achieving. I just feel all around healthier. Able to make sense of my surrounding, better understand friends and family, work without feeling super depressed.

---

My senses don’t get overloaded anymore. I used to feel pain touching rough surfaces. Now it feels a little uncomfortable, but not to the point where it physically hurts due to the stimulation. Hearing several sounds at once doesn’t give me a headache. Social skills seem improved, as well as reduction of social anxiety. While I was on acid I noticed I had a much harder time expressing myself with language than I do normally. However, I didn’t experience any frustration when I had a hard time expressing myself, I felt pleasure instead. This effect has lasted a while, and I am enjoying it.

---

I guess it broke down barriers, is how I would describe it. It felt like up to that point, I just sort of always lived in a shell. The way I isolated from people, I just sort of tore all that down. I said, ‘There’s no need for there to be a barrier.’

---

Since tripping I’ve just become a happier person overall. My depression symptoms have gotten much better and social interaction isn’t so bad anymore. While I still often dislike talking to people, it’s really much better than it was before I started tripping.

---

I had symptoms, although more hyper empathy than no empathy (... reclusiveness, compulsive/obsessive behavior, social awkwardness, and language/speech issues). Psychedelics have helped me cure those almost entirely.

https://thethirdwave.co/psychedelics-autism/


 

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The effects of ketamine on people with ASD

by Martin Silvertant

The experience of ketamine for people with ASD more or less depends on what the reason for taking ketamine is. One can use ketamine for:

- Treatment of autism and/or depression
- Preoperative sedative
- Recreational use

Treatment of (severe) autism

Ketamine, an NMDA receptor antagonist, has been purported by some as a possible treatment for autism. One study from 2015 indicates:

Here, we present a single case study in which a patient with a severe intellectual disability was said to have demonstrated a dramatic, albeit short-lived, remission of the core symptoms of autism following adventitious treatment with ketamine.

Although this anecdote is encouraging, we argue that further analysis of ketamine as a treatment for autism is needed.

Ketamine has also been proven to be a successful antidepressant treatment, so it is probable that the use of Ketamine can help people with ASD as well, either as a way of managing autism symptoms, or alleviating symptoms of depression.

Ketamine as an anesthetic

Ketamine has also been found to be a good anesthetic when it comes managing autistic children pre-operation, and oral Ketamine (6–7 mg/kg) has been found to be the most reliable preoperative sedative for these patients.

When it comes to children with severe autism, mixing Ketamine with Dr Pepper may be required. A case study from 2009 reports the following:

A 16-year-old, 80-kg, 190-cm-tall male with severe autism was scheduled for dental rehabilitation under general anesthesia. During a dental rehabilitation procedure under general anesthesia 1 year previously, the patient had refused to cooperate and drink his premedication and had become very agitated in the preoperative holding area. This necessitated physical restraint and forcible intramuscular injection with ketamine to sedate him.

On the day of the dental procedure [1 year later], the patient was pacing back and forth in his pre-operative room and appeared anxious. He was clearly agitated and withdrew to a corner when the anesthesiologist entered his room. He even punched one of the nurses when she tried to talk to him.

However, he refused to take the oral premedication mixed in sweet syrup. Learning that Dr Pepper was one of his favored beverages, we mixed the oral medications with 15 ml of Dr Pepper to mask the appearance and change the flavor of the drug. In this disguised form, the patient took the drug readily from his parents. He was then left undisturbed in his bed, and he fell asleep in 20 min.

Individualized perioperative plan

Research indicates that individualized perioperative plans are beneficial for sedation of children with ASD, and that the preoperative sedation increased with increasing severity level of ASD:

- Severity Level 1 (21 percent or Asperger’s (31 percent)
- Severity Level 2 (44 percent)
- Severity Level 3 (56 percent)

Cooperation at induction of anesthesia was:

- Severity Level 1 (98 percent)
- Asperger’s patients (93 percent)
- Severity Level 2 (85 percent)
- Severity Level 3 (85 percent)

Recreational use

Anecdote 1

The music clip that has apparently been playing for 9 minutes just ended. “What do you think?” I hear someone say from a distance. I suddenly “wake up” and look around me. I don’t know where I’ve been. I don’t think I was actually present when the music was playing. I dissociated.

I feel light. I feel like I am a bodyless head on a bedding of clouds. Reality is distance somehow, but intensely present at the same time. I feel warm and fuzzy. Just a head covered in clouds…

“Well?”

“Did you say something?”

Anecdote 2

She is 19 years old, and has been diagnosed with Asperger syndrome. She is a frequent recreational drug user, and reports that some drugs do not seem to have the same effects on her as in other people.

Synthetic psychedelic drugs like 2CB don’t seem to have an effect on her.

She also reports that Ketamine just makes her feel drunk. No dissociation. It does, however, disinhibit her, and causes her to engage in bad behaviors such as vandalism.

https://embraceasd.quora.com/The-effects-of-Ketamine-on-people-with-ASD
 
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Study suggests acetaminophen in pregnancy linked to higher risk of ADHD, autism

Medical Xpress | Oct 30 2019

Exposure to acetaminophen in the womb may increase a child's risk for attention deficit/hyperactivity disorder and autism spectrum disorder, suggests a study funded by the National Institutes of Health and the Agency for Health Care Research and Quality. The study was conducted by Xiaobing Wang, M.D., of the Johns Hopkins University Bloomberg School of Public Health, Baltimore, and colleagues. It appears in JAMA Psychiatry.

Attention deficit/hyperactivity disorder (ADHD) is marked by a pattern of hyperactivity and impulsive behavior. Autism spectrum disorder (ASD) is a complex developmental disorder that affects how a person behaves, interacts with others and learns.

Researchers analyzed data from the Boston Birth Cohort, a long-term study of factors influencing pregnancy and child development. They collected umbilical cord blood from 996 births and measured the amount of acetaminophen and two of its byproducts in each sample. By the time the children were an average of 8.9 years, 25.8% had been diagnosed with ADHD only, 6.6% with ASD only and 4.2% with ADHD and ASD. The researchers classified the amount of acetaminophen and its byproducts in the samples into thirds, from lowest to highest. Compared to the lowest third, the middle third of exposure was associated with about 2.26 times the risk for ADHD. The highest third of exposure was associated with 2.86 times the risk. Similarly, ASD risk was higher for those in the middle third (2.14 times) and highest third (3.62 times).

The authors conclude that their results support earlier studies linking acetaminophen exposure in the womb with ADHD and ASD and underscore the need for additional research. The U.S. Food and Drug Administration urges careful consideration before using any pain-relieving medication during pregnancy.

 
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MDMA-assisted therapy: A new treatment model for social anxiety in autistic adults

Alicia L.Danforth, Christopher M.Struble, Berra Yazar-Klosinski, Charles S.Grobd

The first study of MDMA-assisted therapy for the treatment of social anxiety in autistic adults commenced in the spring of 2014. The search for psychotherapeutic options for autistic individuals is imperative considering the lack of effective conventional treatments for mental health diagnoses that are common in this population. To date, MDMA has been administered to over 1133 individuals for research purposes without the occurrence of unexpected drug-related SAEs that require expedited reporting per FDA regulations. Now that safety parameters for limited use of MDMA in clinical settings have been established, a case can be made to further develop MDMA-assisted therapeutic interventions that could support autistic adults in increasing social adaptability among the typically developing population. As in the case with classic hallucinogens, MDMA catalyzes shifts toward openness and introspection that do not require ongoing administration to achieve lasting benefits. This infrequent dosing mitigates adverse event frequency and improves the risk/benefit ratio of MDMA, which may provide a significant advantage over medications that require daily dosing. Consequently, clinicians could employ new treatment models for social anxiety or similar types of distress administering MDMA on one to several occasions within the context of a supportive and integrative psychotherapy protocol.

This paper provides an overview of the rationale and to summarize the method for a pilot study of MDMA-assisted therapy for the treatment of social anxiety in autistic adults. Multiple areas of investigation in autism research have paralleled MDMA research. Some examples include neurobiological studies, particularly on the effects of the neuropeptides oxytocin and vasopressin, which are believed to play a role in interpersonal connection and bonding, and the neurotransmitter serotonin. Cognitive studies, such as investigations of the mechanisms of face recognition, also appear in the literature of both autism and MDMA research.

In healthy volunteers, MDMA administration acutely decreases activity in the left amygdala, a brain region involved in the interpretation of negative cues, and attenuates amygdalar response and emotional reactivity to angry faces. This action of MDMA is compatible with its reported reduction in fear of emotional injury or defensiveness. The multi-level effects of MDMA on brain circuits, monoaminergic neurotransmitters, and neurohormones that have been studied extensively in autistic individuals suggest that further study of the effects of MDMA in autistic populations is warranted. In addition, MDMA has been proposed as a treatment for anxiety disorders, which are prevalent in autistic individuals. The current review takes into account these areas of overlap and explores a parallel indication by studying MDMA-assisted therapy as an intervention for social anxiety in autistic adults.

Conclusions

Promising findings from early psychedelics studies with autistic minors, development of safer clinical research models and methods, clarification around optimal set and setting, and an abundance of self-reported accounts of potential benefits all support the case for initiating a pilot trial with MDMA-assisted therapy for autistic adults who have moderate to severe social anxiety. Researchers gradually and cautiously are exploring a broader range of potential risks and benefits of MDMA-assisted therapies. In the opinion of the authors, this is the optimal and responsible option for addressing the public health concerns that have been raised, as well as to investigate the potential of developing new and novel models for some psychiatric conditions that are refractory to conventional treatment. Informed understanding of the facts about MDMA, a psychotherapeutic compound known to enhance prosocial behaviors, is as relevant to clinicians, researchers, the public, and policymakers now as in any earlier point in its history.

https://www.sciencedirect.com/science/article/pii/S0278584615000603
 

mr peabody

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Effects of CBD on autism

Researchers have found what they believe to be a potential link between autism and CB2 receptors within the endocannabinoid system. One study found that the cell mutations in the brain that have been previously associated with autism block the action of molecules that act on CB2 receptors. These CB2 receptors are the same ones that the cannabinoids found in cannabis, tetrahydrocannabinol (THC) and cannabidiol (CBD) act upon. A similar study also found that mice with autistic-like behavioral issues possessed upregulated CB2 receptors. Another discovered this same prevalence in the upregulation of CB2, but in human subjects. These findings regarding the CB2 receptors support the theory that autism could be caused by a disruption of the brain’s ability to send clear signals and in turn raises the possibility that using cannabinoids found in cannabis can restore communication to allow for proper cell function and communication.

There’s also evidence supporting cannabinoids’ efficacy for treating autism. In one study, an autistic child that was given THC for six months reported significant improvements in hyperactivity, lethargy, irritability, stereotypy and inappropriate speech. In addition, mice with similar behavioral characteristics to autistic humans saw a reduction in depression and were able to remain focused on running on the spinning wheel apparatus after given cannabinoids. Another study found that boosting cannabinoids in the brain helps to correct behavioral issues that are related to fragile x syndrome, the most common known genetic cause of autism.

https://elationcbd.com/tag/epilepsy-children/
 
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mr peabody

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Ketamine, a promising new experimental treatment for ASD

A recent study linked NMDA receptor disfunction to autism spectrum disorder (ASD). However, this idea is not new. Previous scientific reports and case studies have probed existing medications that have profoundly modulated NMDA receptor activity in patients with ASD. One such study used intranasal ketamine in an adult patient with ASD. These physicians reported drastic clinical improvement in this patient, especially with the mood of the patient. In other trials, scientists investigating the effectiveness of another NMDA receptor modulator, memantine, found reasonable effectiveness for improving communication and social behavior. These findings strongly suggest that NMDA receptor dysfunction is involved in some cases of ASD. Ketamine is the gold standard NMDA receptor antagonist and, therefore, may be ideal for treating some cases of ASD.

https://www.ivketamine.com/autism/
 

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Asperger’s Syndrome vs. High-Functioning Autism: Understanding the difference

Autism is a pervasive developmental disorder and the fastest-growing developmental disability among children. Learning that your child has been diagnosed with autism spectrum disorder (ASD) can be a shock, and it is overwhelming to parents who do not yet understand what the diagnosis will mean for their child and how they can help. Even more frustrating for some parents is that within ASD are two separate diagnoses that are often used interchangeably by medical professionals, despite key differences between them. Asperger’s Syndrome (AS) and High-Functioning Autism (HFA) are singular diagnoses with differences in language development, age of onset, and cognitive function.

History of Asperger’s Syndrome and High-Functioning Autism

Asperger’s Syndrome, identified in the 1940s by Hans Asperger, is a subgroup within the autism spectrum in which children display far more significant motor skill delays and obsessive interests, yet fewer issues with speech delays. Asperger’s is more noticeable in boys.

High-Functioning Autism applies to children with autism who have an IQ of 70 or higher and exhibit milder symptoms. For example, these children exhibit fewer language delays, few to no cognitive deficits, and better spatial skills. The most significant difference for children with High-Functioning Autism is that they do not have intellectual disabilities.

Asperger’s Syndrome and High-Functioning Autism do have some significant differences. Knowing the differences can help you better attend to your child’s needs.

Language development

Both Asperger’s Syndrome (AS) and High Functioning Autism (HFA) are considered more mild than other levels of disability on the autism spectrum, but the most noticeable difference between the two is language. With HFA, the child displays delayed language early in development, whereas an AS diagnosis only exists if there are no significant impairments in language. Although children with AS can suffer from language delays, the challenges are typically not as significant as for children diagnosed with HFA.

Age of onset

Those with AS are not typically diagnosed until much later in life, sometimes not even until adulthood. Due to the persistent language delay, children with HFA are diagnosed much earlier. In some cases, a diagnosis is changed from HFA to AS once the child is in school and other characteristics, such as cognitive and social skills, can be better assessed. Early diagnosis is important, especially for children with AS, so that they can receive the proper intervention.

Level of cognitive functioning

It is often believed that neither AS or HFA can occur in children with IQs below 65-70, but unfortunately, that is not always the case for children diagnosed with AS. Children can be diagnosed with AS and still struggle with other cognitive impairments not directly related to autism, such as dyslexia. On the other hand, HFA is typically present in children with IQs that are average to above average. Cognitive impairments are not associated with HFA.

Even though there are differences between AS and HFA, children on the spectrum who have either diagnosis share some challenges, including being more prone to anxiety and depression, especially during early teen years. Early intervention is key. A diagnosis of autism can be very different from one child to another, and many children fall through the cracks with diagnoses like AS and HFA, because these children appear to fit typical norms, aside from a few social quirks.

Understanding the differences and similarities between the two diagnoses will help doctors and specialists provide the correct interventions. Seeking help as soon as possible is the best way to ensure success for children with special needs, and having the right diagnosis and the right information allows parents to better advocate for their children. Every child deserves equal opportunity to feel safe and comfortable in their environment, and obtaining the right diagnosis is the first step.

https://www.angelsense.com/blog/aspergers-vs-high-functioning-autism-understand-the-difference/
 
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mr peabody

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College student finds relief through ketamine infusions

William Storey remembers a childhood filled with hopelessness and loneliness instead of birthday parties and bike rides. “I was abnormal at an age in which abnormality is very unhealthy,” states William, now 23.

The abrupt and dramatic cultural change caused by his family’s move from Maine to Georgia when he was eight complicated the challenges William already faced. Over the years, he’s been diagnosed with attention deficit hyperactivity disorder, bipolar disorder, severe depression and Asperger’s syndrome, a higher – functioning form of autism.

Generally, Asperger’s patients struggle to communicate with and relate to others. They may lack empathy and have difficulty reading other people’s moods and making friends.

During his early years in private school, William felt isolated and misunderstood, especially by classmates, and by teachers who disciplined him for “being out of control.”

He explains the mindset of those teachers this way: “I like to think of it as, This nail doesn’t seem to be fitting into this particular piece of wood quite the same way the rest of them do, so we should probably hit it more.”

By the time he reached fourth grade, William wanted to die. “I hated my life,” he recalls. “I hated everything.” In seventh grade, William switched to a public school, where he thrived for two years. “I was a straight-A student,” he notes. “I was well-liked by my teachers. I had no social problems.” Halfway through his freshman year of high school, however, he “hit a breaking point.”

“I think a lot of it had to do with age, hormonal imbalances, feeling more ostracized from my peers,” William shares. “I had a handful of people that I was at least acquaintances with up until that point. But they stopped interacting with me as much when high school started, for their own reasons.”

He stayed behind when his classmates moved on to tenth grade. As William repeated his freshman year, his conflicts with teachers led school administrators to threaten expulsion if he caused further problems. He managed to finish ninth grade, then transferred to a “less academically rigorous” school.

“It was honestly kind of a joke,” he relates. “I barely did anything, and I still made straight A’s.”

Disappointed and frustrated, he entered an early enrollment program at the University of West Georgia. William lived in a dorm and worked on his high school studies and college classes at the same time.

“I did well the first year,” he points out. “The second year, I had similar problems to when I was in the ninth grade again. It resulted in my father pulling me out of the program and bringing me home.”

More than 18 months later, he was ready to return, but by that time, he was too old for high school. He obtained his GED, but West Georgia didn’t consider that sufficient to re-admit him until William and his family successfully appealed to the state’s board of regents.

Though back in college, he wasn’t back on track. William was desperate for consistent relief from the depression that had plagued him for much of his life, despite taking “nearly every antidepressant on the market.”

Then, last spring, William’s father called Robert Pollack, MD, a friend since their days together at Yale University, to inquire about IV ketamine infusions, a relatively new therapy for treatment-resistant depression.

Dr. Pollack’s Fort Myers-based practice, Psychiatric Associates of Southwest Florida, embraces newly emerging therapies based on pioneering discoveries about the brain. Those include genomic testing to determine which antidepressant might be most effective according to the patient’s genetic profile, as well as transcranial magnetic stimulation (TMS) and theta-burst stimulation (TBS). Both use magnetic pulses to rouse areas of the brain and relieve depression.

Since 2015, Dr. Pollack has also used ketamine, an anesthesia drug introduced in the 1960s that can alleviate suicidal thoughts and act more quickly than many antidepressants. He estimates that 72 to 75 percent of his patients treated with ketamine have had a positive response.

William traveled to Fort Myers for a series of six infusions over two weeks. Following each 30- to 45-minute procedure, it took him a short while to get his bearings.

“I was very woozy, then I went to the hotel where we were staying, got food and I was fine the rest of the day,” he asserts. “Within two weeks of the initial treatment, there was a definite change. I was far less harsh on myself. I was far less miserable.”

When his depression was at its most devastating, William wouldn’t leave home or interact with anyone.

“By the third treatment, he shook my hand and said, Good morning,”

Dr. Pollack reports. “I’ve known him a long time, and that’s a first. People with Asperger’s don’t usually gain a lot of social skills. But William now sits here and laughs. He tells jokes.”

Preventing a “Ruined Life”

William calls Dr. Pollack “a godsend” whose scientific approach is “radically different” from the many other mental health professionals William has seen over the years. He recommends keeping “an open mind about some of the more experimental treatments, because everything has to start experimentally.”

William’s new regimen has him taking fewer medications, which has allowed him to lose weight. He returns once a month for booster infusions. While still “a bit anti-social,” William says he’s getting better and eventually may overcome it.

A student of philosophy, he’s also well on his way to completing his four-year degree at West Georgia in Carrollton, where he has his own apartment and is looking ahead to a career. Teaching is a possibility; so is the legal profession.

“There are so many paths, and I’m not really sure which one I’m supposed to go on yet,” William states. “But I’m also not too bothered by that because at least I’m aware that there is a way forward.”

He’s eager to share his story because he wants people to know how much he and others like him have suffered, he says.

“The way kids with autism tend to be treated, at least in the area I grew up in, is damning,” William declares. “It results in lost lives. Even if they may not end up as suicidal as I was, it really warps a person. It makes it very hard to move on, to be productive, to be happy. And it seems as though people just don’t care, and that really saddens me."

“Misunderstanding may be the cause, but at the same time, I have trouble differentiating between misunderstanding and willful ignorance, because the end result is still a ruined life.”


Brighter days are ahead for those living in darkness, William affirms, and life is worth living.

“There is hope for the future,” he concludes, “that I certainly did not feel a year ago.”

https://paswfl.com/2017/10/16/college-student-finds-relief-through-ketamine-infusions/
 

mr peabody

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Have autism, tried LSD.

Long story short: Diagnosed with Autism when I was 12. Always had problems with sensitivity and frustration, as well as depression and anxiety.

I've always wanted to try acid and my friend finally hooked me up with some.

Some of the things I noticed:

- My senses don't get overloaded anymore. I used to feel pain by touching rough surfaces. Now it feels a little uncomfortable, but not to the point where it physically hurts due to the stimulation. While I was tripping, sandpaper actually felt good.

- Pain has been suppressed significantly. I walked 10 miles 12 hours after I took two hits. This should not have been possible, considering that I have several blisters on my foot that were quite painful earlier.

- I feel significantly calmer. I am dealing with a cluster**** of bureaucracy, but I am not half as stressed as I was over it.

- I have not felt the urge to drink or smoke. To me, this is huge. My drinking was causing minor weight gain, and I don't feel the need to wind down with a beer anymore.

- Hearing several sounds at once doesn't give me a headache.

- Social skills seem improved, as well as reduction of social anxiety. While I was on acid I noticed I had a much harder time expressing myself than I do normally. However, I didn't experience any frustration from that, I felt pleasure instead. This effect has lasted a while, and I am enjoying it.

- The only downside is that my attention-span seems a little shorter than I am used to. I am hoping this recovers over the next few days.

What I liked about my trip is that it helped me put A LOT of demons in the past. I came out with 4 epiphanies.

- What's done is done; the present and future can be changed, not the past.

- Little things can cause huge change. I was amazed that micrograms of this stuff caused the amount of change in my head.

- Taoism made complete sense. Opposites are needed in the world. How do we know what hot is if we do not know what cold is?

- The work I am doing is significant and it will pay down the road.

I have problems from seeing things from different perspectives a lot, and this has helped me significantly.

-LSDautismthroaway (reddit)

---

Hi there. I'm also autistic - Aspergers to be precise. Diagnosed at around 10 I believe, and now 35, going on 36.

It's very hard to judge what positive changes in my Aspergers symptoms I can attribute to LSD use and which to simply "growing up", since I started using LSD at age 19. I continue to take it around 3 to 4 times per year.

I believe however that it is at least partly responsible for my improved ability to handle 'chaotic' situations (like multiple people taking at once), and my generally more positive outlook on life. I still have significant symptoms that make me clearly very far from neurotypical, but I put on a good act most days and there are people who even claim to be surprised when they discover I am autistic.

If you head over to /r/Aspergers and search for LSD, you'll find a few discussions where people have mentioned it.

-dalebewan (reddit)

---

I was just recently (a couple months ago, I'm only 17) diagnosed with Aspergers (classified as high functioning autism under the DSM V, I believe). Since tripping I've just become a happier person overall. My depression symptoms have gotten much better and social interaction isn't so bad anymore. While I still often dislike talking to people, its really much better than it was before I started tripping. I plan on continuing for sure to see if it can continue helping me out.

-Stormageddn (reddit)
 

mr peabody

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CBD oil for kids with autism

by Troy Farah | Dec 11 2018

Parents are fighting for the right to use CBD oil for their children's symptoms.

Lance has autism. When he was diagnosed just shy of his third birthday in 2008, he was nonverbal. He didn't potty train until he was six and he often smeared food on the wall. He was also extremely aggressive, often hitting, pulling hair, or hurting himself.

“My life was hell. I didn’t sleep…In 2012, I was pretty suicidal even,” Michelle tells me. “I did everything [for him] short of any hardcore pharmaceuticals—[Lance did not get] psychotropics or benzos or anything. I stayed away from SSRIs. I used to say, if we could just get rid of the aggression, if he would just stop hitting people…”

Then in 2014, the self-described conservative Christian mother from Dripping Springs, Texas, discovered cannabidiol, or CBD, a compound extracted from cannabis plants. It cannot get you high, unlike THC, the more famous cousin of CBD.

"The difference CBD oil made for Lance was almost immediate," Michelle says. “I'd say that first year of using CBD, his aggression went down probably 60 to 70 percent. In the subsequent years, we've been able to get it down even further.”

Encouraged by these results, that same year, Michelle helped co-found MAMMA, or Mothers Advocating Medical Marijuana for Autism. The non-profit group’s goal is for parents across the country to be legally able to procure cannabis extracts for their kids, and to achieve this, they’re helping rewrite state legislation across the country. MAMMA is part of a growing wave of support for giving cannabis oil (typically high-CBD, low-THC formulations) to kids with autism. Parents say it helps their children regulate their emotions, sleep better, and manage other co-occurring conditions including epilepsy.

But giving CBD oil to kids has sometimes led to Child Protective Services stepping in and threatening parents, even in states like California where CBD is legal. These stories have further motivated groups to lobby for protective legislation.

In 2018 alone, at least six states have enacted legislation allowing the use of marijuana for autism specifically, while two states failed to pass legislation that would have added autism as a qualifying condition. Arizona and Colorado were unable to pass legislation while Delaware, Louisiana, Michigan, Minnesota, Rhode Island, and, most recently, Utah, have enacted measures permitting it. Iowa's Board of Medicine voted on December 14 to add severe pediatric autism to its list of qualifying conditions for medical marijuana.

Other states, such as Texas and Colorado again, are setting their sights on similar legislation. MAMMA chapters have been involved in many of these campaigns or shared resources with groups that have lobbied for the passage of these laws, Michelle says.

“We're just autism moms sitting at a table. We don't go out seeking which states are next,” Michelle explains. “As states roll in and as other moms want to sit at their kitchen table and do what we're doing, we say yes. And we give them [access to] our Dropbox and we tell them what we’ve done and we hold their hand and [we’re] just all trying to do it together.”

States that have previously enacted pro-cannabis laws for people with autism include Georgia, Oregon, and Pennsylvania, plus Puerto Rico. Other places like Massachusetts, California, and Washington, DC, don’t explicitly allow it, but they have lax enough medical marijuana laws that doctors can still prescribe marijuana for the condition.

The Food and Drug Administration (FDA) doesn’t endorse CBD or any form of cannabis for the treatment of autism. At the time of publication, Autism Speaks and Autism Society of America hadn't responded to multiple emailed requests for comment about using CBD for autism. A recent commentary in the journal Global Pediatric Health provided guidelines for doctors whose patients may be using CBD for autism, noting “CBD and similar products remain a promising yet unproven intervention in the treatment of children with ASD.”

And while a small but growing body of research has examined the evidence behind the anecdotes, there still haven’t been any clinical trials of cannabis extracts for autism tested against placebos.

A 2017 study from Chile gave 21 patients with autism oral cannabis extracts that included CBD and THC, and found they were “dramatically more effective than conventional medicines,” with approximately 67 percent of patients showing improvements in their symptoms. A 2018 study from Shaare Zedek Medical Center in Jerusalem gave 60 kids a 20:1 mixture of CBD and THC, and 61 percent of them saw improvements in behavioral disturbances. It’s worth noting, however, that neither study had control groups of people who received no treatment as a comparison, though the authors of the 2018 study have launched a placebo-controlled clinical trial based on their results. Researchers from UC San Diego are also seeking approval for a trial comparing CBD to placebos.

Still, a recent review, published by a team from Tel Aviv University, found “no convincing pre-clinical or clinical data” for the efficacy or safety of medical cannabis, including CBD, for autism. So what’s going on—can cannabis help or not?

First, let’s define autism. It’s a broad spectrum of developmental disorders characterized by deficits in communication and social interaction. Autistic people sometimes struggle with speech and nonverbal communication, may perform repetitive behaviors, and many are sensitive to certain sounds or visuals. Aggressive behavior, including self-harm, is also common.

The cause isn’t fully understood, but autism is more frequently identified today due to more thorough diagnostic criteria. As many as 1 in 59 children fall on the autism spectrum, according to the most recent data from the Centers for Disease Control and Prevention. However, a recently released study in the journal Pediatrics put the rate even higher—1 in 40 or 2.5 percent of the population.

Yet only two FDA-approved medications for managing autism symptoms exist on the market, and they leave much to be desired, Michelle says. Both drugs are only prescribed for irritability in autism, don’t address many of the other symptoms, and they have FDA black box warnings indicating death as a possible side effect. (However, another drug, balovaptan, was given “breakthrough” status by the FDA this year and may become available soon.)

The first, risperidone (Risperdal), is an antipsychotic with a long list of side effects including sudden death in patients with dementia and causing young boys to grow breasts due to hormone imbalances. The other drug, aripiprazole (Abilify), can cause sedation, uncontrolled movements and spasms, incontinence and poor impulse control, and, more rarely, seizures, and death in the elderly. The FDA warning for aripiprazole also cites an increased risk of suicidal thoughts and behaviors in children, adolescents, and young adults taking antidepressants.

Yet, when Colorado governor John Hickenlooper justified rejecting a cannabis autism bill last summer, he cited the drug’s potential side effects, such as young people developing schizophrenia from cannabis use. “I vetoed it just because [the bill] went to all levels of the autism spectrum and my medical advisors said that they were concerned with people at the far end,” Hickenlooper said in an interview with Salon. He did, however, order the state to invest $1.35 million into randomized, controlled trials using CBD to treat irritability from autism.

But Michelle says the parents she knows are far more worried about aggressive autistic kids hurting someone, being institutionalized, ending up in jail, or worse. “Some of these kids die, okay?” she says. “We know a child that died from self-injurious behaviors. Other kids wander and end up in ponds, dead. These are the kinds of things our parents are worried about.”

Michelle adds, “When I sit down with a legislator and they want to start talking to me about how long-term effects on the brain are dangerous for pediatric [cannabis] use, you know, it’s almost laughable when you put it up against what the FDA has said is okay [referring to aripiprazole and risperidone]. On top of that we have Adderall, which is amphetamine, and that’s okay to give the kid.”

This year, the FDA approved the first plant-based cannabis drug for two rare, difficult-to-treat forms of epilepsy. Called Epidiolex, the drug is 98 percent CBD, but the remaining 2 percent is a company secret. There are some major differences between the pharmaceutical version of a drug that many people buy online or from smoke shops: Epidiolex has more stringent quality controls than some over-the-counter cannabis oil products, however, many patients swear by certain brand-specific formulations. (It’s worth noting that GW Pharmaceuticals, the maker of Epidiolex, is investigating the use of cannabinoids to treat autism spectrum disorders.)

Some parents insist that their kids need THC, not just CBD, in order to function, but a number of state laws, such as in Texas where Michelle lives, forbid THC concentrations above 0.3 percent. Furthermore, Epidiolex’s recent move into the CBD market has sparked fears that access to cannabis oil may soon become limited to one formulation that costs about $32,500 a year, although insurance may cover most of it.

“I don't trust the pharmaceutical industry because they have pushed so many drugs through so quickly that have caused harm. They’ve also done a lot of good, though,” Michelle says. “It’s hard not to be wary and wonder what is the end game here. I am worried Epidiolex could create problems [with availability of other oils].”

Because Epidiolex is now Schedule V under the Controlled Substances Act, that means doctors can technically prescribe the drug for off-label use, including for autism spectrum disorder. But just because they can, does it mean they should?

The Israeli researchers from Tel Aviv University conclude probably not, citing a lack of rigorous trials, but note that cannabinoids like CBD are “relatively safe.” One of the greatest remaining risks is product contamination, which can be avoided with strong regulation. One study author, Abraham Weizman, declined an interview.

Used alone or with other drugs, CBD may help with concurrent symptoms of autism spectrum disorder, including sleep disorders, ADHD, anxiety, and seizures, the researchers note. But for other conditions, such as psychosis, addictive behavior, mood or cognitive disorders and aggressiveness, the level of evidence is low.

But another team of Israeli researchers have found promising results. Israel is the medical marijuana research capitol of the world and a decent amount of research on cannabis and autism specifically is coming from the small Middle Eastern nation.

Israel’s first and largest medical marijuana supplier, Tikun Olam (Hebrew for “repair the world"), has helped more than 700 autistic children reduce anxiety and aggression, according to Ma'ayan Weisberg, the company’s head of international relations. Results from a prospective cohort study (meaning it was not randomized or controlled) involving 93 autism patients is expected to be published in the coming weeks and soon the company also plans to begin a double-blind controlled trial on the effects of high CBD oil.

But Weisberg cautions that cannabis is not effective for all children, and the oil does have some side effects, such as fatigue or diarrhea, so it’s not accurate to tout CBD as a “miracle” drug. “To say that something that you put into your body doesn't have side effects is not speaking the truth,” Weisberg says. “Going around saying, ‘Oh, this is like the perfect thing and it helps everything,’ can have a bad effect of the future of this industry.”

It’s not yet clear what metabolic pathway cannabis oil might be acting on to get these benefits or how it may interact with other drugs, so more research is needed. There is some evidence in rodents that increasing the amount of anandamide, a cannabinoid that occurs naturally in humans, can improve autism symptoms. However, this hasn’t been demonstrated in people and if and how cannabis oil may help people with autism is still open to debate.

Medical marijuana may be more popular these days—polling pegs its support among American adults at around 85 percent—yet when it comes to kids with autism, it’s still quite controversial. But desperate families like Michelle’s may see few options for their children, and as popularity for CBD rises, the issue is likely to spark more debate.

https://tonic.vice.com/en_us/article/pa5xkk/cbd-oil-for-autism-in-kids
 

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New Zealand mother and son’s empowerment journey

by Tanea Paterson |

Tanea Paterson is an ibogaine addiction practitioner/counsellor. Both she and her son Josef are autistic but it took some time for them both to have a “tag” to describe themselves.

This is Tanea and Josef’s journey to discovery and the challenges they faced.

“Hey Mum, it’s like you are having a reverse mid-life crisis.”

That from my eldest son Josef.

It wasn’t until he was 14 years that we could finally give a valid name to his unique way of being. Not that we needed a name ourselves, but it seemed the rest of the world around us was desperate to use words to describe him. In the end, since they weren’t doing a great job at deciding what name to use; I took it upon myself. This for me was the beginning of our self-efficacy and empowerment journey.

Regardless of why, who and how, this brought change and positivity. I could learn about what makes him so interesting and individual. I could see him in a more understanding and empathic way and I had a new interest to delve into. It wasn’t as though I was sheltered from autism, far from it. Some of my favourite people on this planet are autistic; they are the people I always feel most myself with. They still are and so is my son.

I was alone when I was pregnant with him, not totally alone, I may as well have been though. Single mum at 23. It was all up to me and I thought I was doing okay. Once we hit the ‘system’, education specifically, things changed. We were lost in a spiral of confusion, misunderstanding and misdirection. The things that we were told and the things that I could not agree with came thick and fast. “Bad behaviour”, ill-fitting labels, blame, stigma and sadness – we had our fill.

I began drowning once again in my own psychological ailments and labels. Most of those diagnoses felt like steel gowns wrapped around me, they were intermittently too small to be comfortable and then too large to hold up. I really thought I was able to show the teachers, doctors and psychiatrists what I wanted them to see and understand. I’d quietly say, “No I think there’s more going on”, maybe even mutter the autism word. And they would suggest it was my parenting and his absent father.

I said it louder “No! You are wrong, these behaviours that you are seeing only happen because of what you think and say about him, about us!!” and they would offer no help except medicine and parenting courses. My boy and I were bamboozled by the misfiring of information that swept past me, always leaving a smear or two. These would result in layers of ‘Shut up we know best’ and ‘Only you can fix this by being better at parenting’ or ‘Ahh well look at his parents, you better do something or be prepared for……when he is older’.

Because they didn’t hear what I was saying, they listened with their eyes and their text books. They perceived our body language to mean a distant relationship, cold and uncaring. I know this because I read the words in his notes. I wasn’t aware that my body language and eye contact suggested withdrawal, disinterest and failure. My words felt soft and meaningful coming out of my mouth, although not too different to pleading. Sometimes how we intend to react and be, isn’t how it appears to others.

My presentation would change at times, long enough for them to see it with their eyes. They saw the strain it took to try to process their information dumps and my inability to control my nervous fake smile. They saw my lack of ‘get up and go’ and they saw how calm and relaxed I failed to be. My voice wasn’t soft and meaningful, it was monotone and pragmatic. My body language well, rocking and pushing my nails making grooves in my skin – they saw that too.

“Mum is on the methadone programme.”Has a history of depression, PTSD…" etcetera...

..has a criminal record, was an inpatient in ward 10.” There was more that they didn’t write, there was more they didn’t know as well. If they had, then they could discuss it with their supervisor, slowly blink and nod ‘knowingly’ to each other. They knew about ‘those sorts of people’ that ‘chose’ to make decisions like that.

What none of us knew for certain until so much later was that these situations and the rest of the scenarios for this son and his mum were underpinned by undiagnosed autism and the ‘different thinking’ confusion in a ‘typical’ world.

So I delved into my new focus interest of autism; to be fair this already had been an intellectual attraction to me. Slowly, things for us changed for the better as I begun to take some power back. However, 14 years is a long time to be experiencing those situations. It is a long time to be parenting in a way that you were told ‘was best’, a way that caused more harm than ‘positive change’. I was beginning to experience life as a mum that felt peaceful and legitimate to our way of being.

Three years of reading about and watching autistic people talking on videos I happened upon a female autistic. She made a movie, it seemed as though she had made a movie about me. My monotonous expression cracked smiling, crying and frowning. Not the ones I had practised so well, these facial shapes felt new. Almost like when you stretch a stiff muscle and it feels fresh again.

A vacuum of visuals of memories, a collage of ever changing images rolled across the inside of my eyes. “Maybe that was different to what I remember, maybe that was WHY that…..”
A million times those words ran by like subtitles to my life’s movie. And my son, I am like him!!

It is still all up to me, and by now I am 40. The years I had spent thinking I was somehow different to my son and if I could only parent him their way, then he would ‘be’ how they wanted him to be. And then I thought of me and how I would feel if I was like him. And that is when I knew I was.

We aren’t the same, no, we have the same cultural tendencies. Some of them are concretely the same and some at polarities to each other, however in essence concrete as well. The distance between two people shrinks when you realise, recognise and empathise with each other. Knowing I too am autistic evened out the playing field in a sense and to me that was the greatest relief.

We are still parent and child in our relationship, also now we are two autistic people who both get as obsessed, confused, anxious and overwhelmed as each other. Usually, although not always at different times, with different things.

For me gaining my formal diagnosis was like passing a master class which gave me the right to use my instincts. It was a justification of me being a good person and mum. I focused on shedding as much of those smears and scars as I could and remembering and reinvigorating my true self, as much as I can. It will never be all clear, however I can continue to grow alongside and with my whanau. I can be vulnerable now and not feel like a failure, and interestingly this vulnerability makes my parenting stronger than ever. No longer do I feel I am ‘supposed to have it all together’ and ‘know it all.' Which inevitably leads me to fall apart when the pretendies became too much.

This is my reality, a real autistic parenting another real autistic. Now we share a stronger bond than ever, we can compare notes and language about being anxious or overwhelmed. I now know that I understand my son better than all of those teachers and doctors and even though I fell into some traps of trying to change him, I didn’t stay there long enough to lose my son’s trust.

https://www.altogetherautism.org.nz/mother-sons-empowerment-journey/
 

mr peabody

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Autism's hidden habit

by Maia Szalavitz

Conventional wisdom holds that people with autism don't get hooked on alcohol or other drugs, but new evidence suggests otherwise.

Shane Stoner's addiction began in 2008. He lost a factory job, his parents divorced, his father died, and then a relative introduced him to heroin. "I felt like heroin gave me confidence," Stoner says. "I could get out of bed in the morning and do the day. No matter what happened, it made me feel like it was going to be all right." It erased his constant anxiety.

Stoner, now 44, eventually entered detox in 2013 after he was arrested for stealing copper from an abandoned house. It was obvious at that point that he was addicted to heroin. But it would take several more years for him to get the diagnosis that truly helped him understand himself: autism.

The new label came as a relief. It explained Stoner's sensitivity to things such as tags on his T-shirts, and his succession of obsessive interests. It clarified why he had such a difficult time fitting in as a child, his problems with roommates in college, and why he continued to struggle with social connections as an adult. "I can't believe nobody ever mentioned it before, because I started thinking back and there's pictures of me, like, 3 years old, and I'm honestly flapping my hands."

Stoner is now three years into recovery from his addiction. "I like my autism now that I know what it is," he says. "I don't like all parts of it, I don't like the anxiety, but it's like it all made sense."

Until recently, researchers held that addiction among people with autism is rare, although there wasn't much solid evidence for this view. It seemed plausible, though: Many people with autism have a penchant for strictly following rules, which would seem to make them less likely to try alcohol or illegal drugs. Because people with autism are often isolated from their peers, this could protect them from the peer pressure that can lead to youthful experimentation. And many people diagnosed with autism decades ago had severe features; a person who can't live independently has few opportunities to become addicted.

A new study in Sweden, however, suggests that people with autism who have average or above-average intelligence quotients (IQs) are more than twice as likely to become addicted to alcohol or other drugs as their peers are. The risk is even higher for people who also have attention deficit hyperactivity disorder (ADHD). This study is the first to look at the general risk for addiction among people with autism.

Other research is also finding unexpected biological and psychological commonalities between the two conditions. "These two fields have really developed independently, but I think there could be a lot of cross-fertilization," says Patrick Rothwell, assistant professor of neuroscience at the University of Minnesota Twin Cities in Minneapolis. In 2016, Rothwell opened a lab focused on studying the biological and behavioral parallels between addiction and autism.

There are similarities in the way people with either condition use repetitive behaviors to cope with emotional problems, as well as in their impulsivity and compulsions. The two conditions affect some of the same brain regions and involve some of the same genes. These connections are spurring a new area of research that could eventually help improve both autism care and addiction treatment and prevention.




New numbers:

For much of the 20th century, most of those who received an autism diagnosis were on the severe end of the spectrum. In this largely nonverbal population, addiction seemed unlikely. But in 1994, when the Diagnostic and Statistical Manual of Mental Disorders added Asperger syndrome as a category, the spectrum extended to people who had much more opportunity to access alcohol and other drugs. Still, for years, the assumption remained that addiction was one concern the autism community could safely ignore.

When Espen Arnevik reviewed the literature for a paper he published last year, he found only 18 studies that looked at the overlap between autism and addiction. Each of them looked mainly at select samples, such as people being treated for addiction, or those caught up in the criminal justice system, rather than at the general population.

Arnevik found that the combined prevalence of alcoholism and addiction in people with autism ranged from 0.7 percent to 36 percent. Because the data were so varied, the range couldn't be narrowed down any further. Overall, however, "most studies suggest a significantly lower prevalence than in the general population," says Arnevik, associate professor of psychology at the University of Oslo in Norway. In the United States, the lifetime prevalence of alcoholism is 14 percent; for other substance addictions, the figure hovers around 2 to 3 percent (there is some overlap between these groups).

Given the prevailing impression that addiction is uncommon among people with autism, the findings of the Swedish study came as a surprise to many. The study analyzed national health registry records of the 1.3 million Swedes who were born between 1973 and 2009, and identified 26,986 people diagnosed with autism. The researchers also determined how many of those with autism had an additional diagnosis of intellectual disability, substance use disorder or ADHD.

Overall, an autism diagnosis doubles the risk of addiction, the researchers found. Elevated risk is concentrated among those with an IQ of 100 or above. But across the spectrum, ADHD is a great multiplier of risk: Among those with autism and intellectual disability, having ADHD increases the risk of addiction fourfold; among those with an IQ in the typical range or above, ADHD increases the risk eightfold.

Parents and siblings of people with autism also have a higher risk of addiction, suggesting a genetic link.

These findings don't necessarily conflict with earlier data showing lower addiction risk among people with autism, says Paul Lichtenstein, professor of genetic epidemiology at the Karolinska Institute in Sweden, who worked on the study. The main takeaway, he says, is that risk varies with level of intellectual ability. Previous research often included a much higher proportion of people with intellectual disability, which would have skewed the results.

On the other hand, autism is often diagnosed later in Sweden than in the U.S., and the proportion of people at the milder end of the spectrum may be higher. That may cause the increase in addiction risk to look larger than it is, notes Jeremy Veenstra-VanderWeele, associate professor of psychiatry at Columbia University. "I would want to see whether this paper's findings hold up when [autism] follows the typical pattern of relatively early recognition, rather than quite late diagnosis." Another possibility: Given the wide variety of people on the spectrum, it is possible that some types of autism raise risk, whereas others lower it.

The Swedish finding comes as less of a surprise to people with autism. Matthew Tinsley, now 55, had always looked to alcohol and prescription drugs to reduce his anxiety. Tinsley is author of Asperger Syndrome and Alcohol: Drinking to Cope, one of the few books on this subject. (He has been sober since 2004.) From an early age, he would take his mother's anxiety medications when he felt overwhelmed. "I found being amongst groups of people very stressful," he says.

In college, he discovered that alcohol also helped ease socializing. "Everyone else is drinking, it's socially acceptable, and if you drink, you fit in because everyone else is doing it," he says. "It took the edge off." By the time he was in his 40s, Tinsley adds, he was drinking lethal amounts of alcohol: 3 liters of gin every day. This led to cirrhosis, and he entered rehab in 2004. As in Stoner's case, his autism diagnosis in 2005 came as a relief. Once he realized there was an explanation for his sensory and social difficulties, he began to be kinder to himself and found healthier ways of coping.

The link between autism and addiction is also unsurprising to clinicians who work with people on the spectrum. Valerie Gaus, a psychologist in the New York City area, says of her clients with autism who have drinking or drug problems, many of the older ones turn to alcohol, whereas the younger ones tend to use marijuana.

Eric Hollander has seen a similar pattern. However, he says he treats more behavioral addictions, such as gambling. "I work with a lot of people with [autism] who have all kinds of impulsive behaviors," says Hollander, director of the Autism and Obsessive Compulsive Spectrum Program at Albert Einstein College of Medicine in New York. "In fact, that's one of the main targets when people come in for treatment. Either they're out of control in terms of shopping on the internet or gaming, or they're just addicted to the internet."

Hollander has looked at similarities between obsessive compulsive disorder, addiction, and the impulsive and compulsive behaviors that occur in people with autism. He proposes that these conditions, all characterized by repetitive thought and behavior, should be grouped together as obsessive compulsive spectrum disorders in the diagnostic guidelines.

Impulsivity - acting quickly without thinking - and compulsivity, or being unable to stop an activity once it has started, are both problems of self-control, or executive function. Impulsivity is strongly linked with the risk for becoming addicted; addiction is defined as compulsive drug use that persists despite negative consequences. People with autism show signs of both impulsivity and compulsivity. For example, they frequently engage in repetitive, compulsive behaviors, dubbed stimming, to address either a lack of sensory stimulation or a surfeit of it. In the case of addiction, different types of addictive drugs can enhance or reduce sensation.

Tanea Paterson, a mother of two who lives in New Zealand, used drugs to deal with social stress, but also to cope with her sensory problems. A mixture of heroin and other illegal opioids, her drug of choice, "wound down my senses to a more bearable level," she says. Using drugs also gave Paterson routines, she says. "They were predictable in an unpredictable world."

Paterson kicked her addiction more than 10 years ago, but didn't find out she has autism until 2015. Her son had previously been diagnosed with autism, and she convinced the therapist who had helped him to evaluate her. For Paterson, too, the diagnosis brought relief: "It was a lifting of so much guilt and shame in many, many ways," she says.

Paterson had been bullied and excluded as a teenager before she found peers who used marijuana and were more accepting. In this group, she felt safer, she says. Others with autism and addiction also report that drug culture helps them feel accepted: Unusual behavior is expected when people are high, so they don't stand out.




Deeper links:

Addiction is known to be linked to changes in the striatum, a central region of the brain involved in pleasure, motivation and habitual behavior. During a period of addiction, control over drug-related behavior shifts from one region of the striatum to another.

Before drug use devolves into addiction, drug-related brain activity occurs primarily in the ventral area, which is involved with motivation and seeking pleasure. At this stage, people take drugs mainly because they offer either comfort or joy. The ventral region seems especially connected to impulsive behavior. But as addiction progresses, some of the action moves toward the dorsal striatum, a region involved in automating behavior into more programmed patterns, which can be set off by specific cues. This automation can be useful when it processes a complex dance move or other skill into a single, willed action, but it can also create a compulsion that, once unleashed, becomes difficult to restrain.

The compulsion could be drug use, but it could also be the repetitive behaviors of autism. In both cases, the striatum drives the persistent behavior. It's possible that in people with autism or addiction, the striatum is more prone to getting stuck in a repetitive pattern. "[Behavioral patterns] become very difficult to change once they're well-practiced," says Rothwell, who is among the few researchers who studies both autism and addiction. "That's definitely a concept that I think is very relevant both to the repetitive symptoms of autism and the habitual patterns of addiction."

Paterson, the New Zealand woman who formerly used opioids, says she sees these patterns in her own behavior: "I think of autistic inertia - can't start, can't stop - comfort in consistency, predictability and obsessiveness."

Addiction and autism may also share genetic connections. For example, Rothwell has found that NLGN3, a candidate gene for autism, is highly active in the nucleus accumbens, a region in the ventral striatum that is linked to desire and drug use. "That was striking because that's very much also an addiction hotspot," Rothwell says.

Chromosomal region 16p11.2 is deleted in some cases of autism, and mice with this deletion show enlargements in the nucleus accumbens. CNTNAP4, another autism candidate gene, is also active in the striatum; mice that lack the protein have elevated levels of dopamine in the nucleus accumbens, which is a brain state that is common at the start of addiction.

There are also intriguing neurochemical connections between autism and addiction. Interactions between oxytocin, dopamine and the brain's natural opioids in the striatum appear to be important in both conditions: Oxytocin is thought to connect the memory of specific people to pleasure, thereby creating social bonds. This process may go awry in some people with autism, and they may find socializing unrewarding or unpleasant. There may be parallels with addiction here as well. People with addiction often report feeling that social connection is difficult or even impossible, until they find solace in drugs.

Addiction also affects the brain's endogenous opioid system, which produces the experience of pleasure and comfort most people feel when they socialize. Mice lacking genes involved in this system are less sociable than usual and engage in stereotyped behavior reminiscent of autism. "There's some very interesting data out there that suggests there could be a deficiency in opioid signaling that might be a factor in autism," says Rothwell.

Genes involved in the autism-related conditions Rett syndrome and fragile X syndrome also show up in addiction research. Neuroscientists were startled to find that MeCP2, which is mutated in Rett syndrome, becomes highly active in the brain when rats are given access to large amounts of cocaine. FMR1, the gene mutated in fragile X syndrome, seems to have a similar relationship to cocaine addiction.

A better understanding of the connections between autism and addiction could provide important therapeutic insights into both, says Robert Malenka, professor of psychiatry at Stanford University in California, who worked with Rothwell on the NLGN3 research. "Clinicians in one field should pay attention to what is going on in the other field," he says.

Autism and addiction research have already converged on one medication: baclofen, a drug approved in the U.S. for treating muscle spasms. A version of baclofen is in trials for treating autism and the related fragile X syndrome. The drug is also widely used in France to treat alcoholism, although clinical trials have shown mixed results. And preclinical research suggests it may help treat opioid and cocaine addiction.

For people on the spectrum who have addictions now, however, getting help can be challenging. There is not a single study on the best way to treat these individuals. In fact, there's reason to believe that most addiction treatments are poorly suited to people with autism.

Addiction therapy is mainly conducted in group sessions, with strict rules requiring members to participate and articulate emotional problems. People with autism may respond to these expectations with anger and anxiety, which counselors may misinterpret as defiance. For those who are obligated to participate by the criminal justice system, failure to comply can even lead to incarceration.

Stoner, for one, says he had difficulty with rehab because he was made to spend many hours in group therapy and 12-step programs, including Narcotics Anonymous and Alcoholics Anonymous. "I've had a really hard time getting into that," he says. When faced with speaking in front of a group or at an Alcoholics Anonymous meeting, "my mind goes blank," he says. He also had difficulty connecting with other members. He was rejected twice before he found someone to be his sponsor, or recovery mentor.

Given these difficulties, programs to help people with autism who have addictions may need to rely less on group therapies and more on individualized care.

Stoner now works as a peer specialist at the Kenmore Club, a government-funded project of the Rappahannock Area Community Services Board in Fredericksburg, Virginia. He says the organization's more personal approach is better suited to his needs. The staff train people with various forms of developmental and psychiatric disabilities to help one another. Until more research is done, he says, people with both autism and addiction will have to find their own way to the best care.

https://www.spectrumnews.org/features/deep-dive/autisms-hidden-habit/
 
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mr peabody

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Autism symptoms reduced nearly 50% two years after fecal transplant

Neuroscience News | April 9, 2019

Arizona State University researchers claim microbiota transfer therapy reduces symptoms associated with autism and gastrointestinal problems for two years post-treatment. The study suggests MTT may be a promising option for helping to treat children with ASD who also have GI problems. The researchers stress further research, including double-blind, placebo-controlled randomized trials with a larger cohort be carried out.

According to the Centers for Disease Control and Prevention, about one in every 59 children in the U.S. is diagnosed with autism, up from one in every 150 in 2000. They report that “about half a million people on the autism spectrum will become adults over the next decade, a swelling tide for which the country is unprepared.”

The apparent rise in autism spectrum disorder (ASD) and its stubborn resistance to treatment has spurred a legion of researchers to enter the field and explore the disability in innovative ways.

Currently, effective treatments for ASD include behavioral therapy, speech and social therapy, psychiatric medications, and dietary and nutritional approaches. However, no medical treatments have been approved to treat core symptoms of ASD such as social communication difficulties and repetitive behaviors.

One promising avenue of autism research involves the gut microbiome, which is the collection of microbes that lives in our intestines and helps us in many ways including digestion of our food, training our immune system and preventing overgrowth of harmful bacteria. Recent research suggests our gut microbiomes also affect brain communication and neurological health. Worldwide, interest is growing in the idea that changes in normal gut microbiota may be responsible for triggering a vast range of diseases.

In a new study, “Long-term benefit of Microbiota Transfer Therapy in Autism Symptoms and Gut Microbiota,” published in Scientific Reports, Arizona State University researchers Rosa Krajmalnik-Brown, Ph.D., James Adams, Ph.D, and lead author Dae-Wook Kang, Ph.D, demonstrate long-term beneficial effects for children diagnosed with ASD through a revolutionary technique known as Microbiota Transfer Therapy (MTT), a special type of fecal transplant originally pioneered by Dr. Thomas Borody, an Australian gastroenterologist. Remarkably, improvements in gut health and autism symptoms appear to persist long after treatment.

At two years post-treatment, most of the initial improvements in gut symptoms remained. In addition, parents reported a slow steady reduction of ASD symptoms during treatment and over the next two years. A professional evaluator found a 45% reduction in core ASD symptoms (language, social interaction and behavior) at two years post-treatment compared to before treatment began.

“We are finding a very strong connection between the microbes that live in our intestines and signals that travel to the brain,” said Krajmalnik-Brown, a professor at the Biodesign Swette Center for Environmental Biotechnology at the Biodesign Institute and ASU’s School for Sustainable Engineering and the Built Environment. “Two years later, the children are doing even better, which is amazing.”

Roughly 30-50% of all people with autism have chronic gastrointestinal (GI) problems, primarily constipation and/or diarrhea that can last for many years. That chronic discomfort and pain can cause irritability, decreased attention and learning, and negatively impact behavior.

An earlier study with only vancomycin (an antibiotic) had found major temporary improvements in GI and autism symptoms, but the benefits were lost a few weeks after treatment stopped despite use of over-the-counter probiotics.

So, the question at hand was what’s going on in the gut, and how does it affect both physical and behavioral symptoms of autism, and how can we develop a long-lasting treatment?

Krajmalnik-Brown, Kang and Adams have shown that by transferring healthy microbiota to individuals lacking certain gut bacteria, it is possible to “donate” a more diverse set of bacteria into the patient and improve gut health.

In Australia, Fecal Microbiota Transplantation (FMT) was initially developed by Borody. At his Centre for Digestive Diseases in Sydney, Borody has overseen more than 18,000 FMTs for various disorders since 1987. He pioneered in Australia the use of FMT for colitis and Clostridium difficile infection, and was the first to use oral FMT to treat children with ASD. Only one dose of FMT is usually enough to cure C. Difficile infections, but his patients with autism were far harder to treat. He discovered that three months of daily FMT was required to treat his autism patients, but eventually resulted in significant improvements in both GI and autism symptoms.

Based on his experience with his patients, Borody led the design of the clinical treatment used at ASU for this study. The MTT approach involves 10 weeks of treatment, including pre-treatment with vancomycin, a bowel cleanse, a stomach acid suppressant, and fecal microbiota transfer daily for seven to eight weeks.

The initial open-label study, led by Krajmalnik-Brown and Adams, and published in the journal Microbiome in 2017, concluded that “this exploratory, extended-duration treatment protocol thus appears to be a promising approach to alter the gut microbiome and improve GI and behavioral symptoms of ASD. Improvements in GI symptoms, ASD symptoms, and the microbiome all persisted for at least eight weeks after treatment ended, suggesting a long-term impact.” The present study now shows the benefits are extended beyond eight weeks to at least two years post-treatment.

The ASU team compared differences in the microbiome of children with autism compared to typically developing children. At the start of the study, children with autism were found to have lower diversity in their respective gut microbes and were depleted of certain strains of helpful bacteria, such as Bifidobacteria and Prevotella. “Kids with autism are lacking important beneficial bacteria, and have fewer options in the bacterial menu of important functions that bacteria provide to the gut than typically developing kids,” Krajmalnik-Brown said.

FMT treatment substantially increased microbial diversity and the presence of helpful bacteria in the gut, such as Bifidobacteria and Prevotella. After two years, diversity was even higher and the presence of beneficial microbes remained.

“We originally hypothesized that our therapy would be efficient to transform the dysbiotic gut microbiome toward a healthy one. In our original paper in 2017, we reported an increase in gut diversity together with beneficial bacteria after MTT, and after two years, we observed diversity was even higher and the presence of beneficial microbes remained,” Kang said. He added that this may be one of the reasons for success in improving the gut health, but further mechanistic studies are warranted to define specific roles of gut microbes in the context of autism.

The work done at ASU is not only about treating patients but also about learning from the treatment in order to develop better formulations and optimize dosing.

“Understanding which microbes and chemicals produced by the microbes are driving these behavioral changes is at the heart of our work,” Krajmalnik-Brown said. The team’s new publication reports that the study demonstrated that two years after treatment stopped the participants still had an average of a 58% reduction in GI symptoms compared to baseline. In addition, the parents of most participants reported “a slow but steady improvement in core ASD symptoms.”

“Every family completed the study, and every family returned two years later for a follow-up evaluation,” said Adams, citing the families’ dedication to the research. “The treatment was generally well-tolerated with minimal adverse effects.”

“This is a world-first discovery that when we treated the gut bacteria in these children during our clinical trial two years ago to reset their microbiome with FMT, positive results are still continuing to be improving two years from the original treatments. I would call it the highest improvement in a cohort that anyone has achieved for autism symptoms,”
said Borody.

Professional evaluation revealed a 45% decrease in ASD symptoms compared to baseline. Researchers note that although there may be some placebo effect, much of that effect appears to be real. At the start of the study, 83% of participants were rated as “severe” autism. At the end of the study, only 17% were “severe,” 39% were “mild/moderate,” and 44% were below the cut-off for mild ASD.

Greg Caporaso, at Northern Arizona University, a leading expert in microbiome data science and a co-author on these studies, helped to analyze the microbiome data to better understand bacterial changes as a result of MTT.

“Drs. Krajmalnik-Brown, Kang and I are excited about the results, but we want to caution the public that we need larger clinical trials for this to become an FDA-approved treatment,” said Adams. Professional expertise is required for safe and effective treatment.

MTT improves GI distress by introducing key strains of beneficial bacteria and helping to raise levels of biodiversity within the gut, boosting health overall.

Adams has both professional and personal reasons for doggedly pursuing ways to help children with autism because he knows the situation first-hand. His daughter was diagnosed with autism just before her third birthday. Adams, a President’s Professor at ASU’s School for Engineering of Matter, Transport and Energy, and the chair of Materials Sciences, is also president of the Autism Society of Greater Phoenix, the largest parent support group in Arizona.

“Dr. James Adams is the reason why I started working on autism,” Krajmalnik-Brown said. “I had the methods to do all of the measurements and assessments in the microbiome part of the work, and he had the autism knowledge.”

Adams recruited patients, supervised clinical work and ASD assessments, and guided the patients through the trials, and Krajmalnik-Brown led the microbiome evaluations and helped plan the study.

All of the participants in the study exhibited chronic GI symptoms from infancy, including chronic constipation and/or chronic diarrhea. The treatment benefits extended beyond their physical symptoms, even causing some parents to note how much their children’s behavior had improved over time.

“It is very unusual to see steady gradual improvement after the conclusion of any treatment,” said Adams. “We only conducted the long-term follow-up study after several families told us that their child was continuing to improve significantly.” Krajmalnik-Brown stated that the data suggests that the MTT intervention transformed the gut environment into a healthier status, leading to long-term benefit on both GI and ASD symptoms.

Adams said many of the participants in the trial shared common traits, including birth by C-section, reduced breastfeeding, increased antibiotics, and low fiber intake by the mother and child, all of which lead to limited biodiversity in their gut bacteria. Due to the open label nature of the study and the small sample size used, more research is needed in order to verify the usefulness of MTT as a therapeutic.

The initial study involved a “first-generation” estimate as to optimal dose and duration of treatment, and it was enough for 90% of the children to have substantial benefit. The team is now working on optimizing the dosing and duration to try to improve benefits even more, and to determine if booster doses may be needed in some cases.

 

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Scientists discover link between autism and cognitive impairment

by University of Toronto | Medical Xpress | 29 Jan 2020

Autism can bestow brilliance as well as cognitive difficulty, but how either scenario plays out in the brain is not clear. Now a study by University of Toronto researchers has found that a tiny gene fragment impacts the brain in a way that could explain swathes of autism cases that come with mental disability.

Researchers led by Benjamin Blencowe, a professor of molecular genetics in the Donnelly Centre for Cellular and Biomolecular Research, and Sabine Cordes, a senior investigator at Sinai Health System's Lunenfeld-Tanenbaum Research Institute (LTRI), have identified a short gene segment that is crucial for brain development and information processing. Writing in the journal Molecular Cell, the researchers describe how an absence of this segment is sufficient to induce altered social behaviour—a hallmark of autism—in mice, as well as learning and memory deficits, which are seen in a subset of autism cases.

Best known for difficulties in social interaction and communication, autism is thought to arise from mishaps in brain wiring during development. It can strike in various ways—those who suffer from it can have superior mental ability or need full time care. Where on the autism spectrum a person falls depends in large part on their genetics, but most cases are idiopathic, or of unknown genetic origin.

"It's very important to understand the mechanisms that underlie autism, especially in idiopathic forms where it is not clear what the underlying causes are," says Thomas Gonatopoulos-Pournatzis, a research associate in Blencowe's lab and lead author of the study. "Not only have we identified a new mechanism that contributes to this disorder, but our work may also offer a more rational development of therapeutic strategies."

Blencowe's team had previously uncovered a link between autism and short gene segments, known as microexons, that are predominantly expressed in the brain. Through a process known as alternative splicing, microexons are either spliced in or left out from the final gene transcript before it is translated into a protein. Although small, microexons can have dramatic effects by impacting a protein's ability to bind its partners as required during brain development. However, how individual microexons contribute to autism is not clear.

The team focused on a specific microexon located in a gene known as eIF4G, which is critical for protein synthesis in the cell. They found that this microexon is overwhelmingly excluded from eIF4G gene transcripts in the brains of autistic individuals.

To test if the eIF4G microexon is important for brain function, Gonatopoulos-Pournatzis together with Cordes' team bred mice that lack it. These mice showed social behaviour deficits, such as avoiding social interaction with other mice, establishing a link between the eIFG4 microexon and autistic-like behaviours.

A surprise came when the researchers found that these mice also performed poorly in a learning and memory test, which measures the animals' ability to associate an environment with a stimulus.

"We could not have imagined that a single microexon would have such an important impact not only on social behaviour but also on learning and memory," says Gonatopoulos-Pournatzis.

Further analysis revealed that the microexon encodes a part of eIF4G that allows it to associate with the Fragile X mental retardation protein, or FMRP, which is missing from people affected with Fragile X syndrome, a type of intellectual disability. About a third of individuals with Fragile X have features of autism but the link between the two remained unclear—until now.

eIF4G and FMRP associate in a complex that acts as a brake to hold off protein synthesis until new experience comes along, as the break is removed by neural activity, the researchers also found.

"It's important to control brain responses to experience," says Gonatopoulos-Pournatzis. "This brake in protein synthesis is removed upon experience and we think it allows formation of new memories."

Without the microexon, however, this brake is weakened and what follows is increased protein production. The newly made proteins, identified in experiments performed with Anne-Claude Gingras, Senior Investigator at LTRI, form ion channels, receptors and other signaling molecules needed to build synapses and for them to function properly.

But, making too many of these proteins is not a good thing because this leads to the disruption of the type of brain waves involved in synaptic plasticity and memory formation, as revealed by electrode recordings of mouse brain slices, in experiments performed with the teams of Graham Collingridge, Senior Investigator at LTRI, and Melanie Woodin, a professor of cell and systems biology at U of T.

Moreover, an excess of similar kinds of proteins occurs in the absence of FMRP, suggesting a common molecular mechanism for Fragile X and idiopathic autism.

Researchers believe that their findings could help explain a substantial proportion of autism cases for which no other genetic clues are known. The findings also open the door to the development of new therapeutic approaches. “One possibility is to increase the splicing of the eIF4G microexon in affected individuals using small molecules as a way to improve their social and cognitive deficits,” Blencowe said.

 
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mr peabody

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Movement to legalize CBD for kids with autism

Lance has autism. When he was diagnosed just shy of his third birthday in 2008, he was nonverbal. He didn't potty train until he was six and he often smeared food on the wall. He was also extremely aggressive, often hitting, pulling hair, or hurting himself.

“My life was hell. I didn’t sleep… In 2012, I was pretty suicidal even,” Michelle tells me. “I did everything [for him] short of any hardcore pharmaceuticals—[Lance did not get] psychotropics or benzos or anything. I stayed away from SSRIs. I used to say, if we could just get rid of the aggression, if he would just stop hitting people…”

Then in 2014, the self-described conservative Christian mother from Dripping Springs, Texas, discovered cannabidiol, or CBD, a compound extracted from cannabis plants. It cannot get you high, unlike THC, the more famous cousin of CBD.

The difference CBD oil made for Lance was almost immediate, Michelle says. “I'd say that first year of using CBD, his aggression went down probably 60 to 70 percent. In the subsequent years, we've been able to get it down even further.”

Encouraged by these results, that same year, Michelle helped co-found MAMMA, or Mothers Advocating Medical Marijuana for Autism. The non-profit group’s goal is for parents across the country to be legally able to procure cannabis extracts for their kids, and to achieve this, they’re helping rewrite state legislation across the country. MAMMA is part of a growing wave of support for giving cannabis oil (typically high-CBD, low-THC formulations) to kids with autism. Parents say it helps their children regulate their emotions, sleep better, and manage other co-occurring conditions including epilepsy.

But giving CBD oil to kids has sometimes led to Child Protective Services stepping in and threatening parents, even in states like California where CBD is legal. These stories have further motivated groups to lobby for protective legislation.

https://tonic.vice.com/en_us/article...autism-in-kids
 

mr peabody

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Premature birth found to interrupt placental function, causing brain injuries, and autism

Neuroscience News | April 27, 2019

Disruptions in the supply of allopregnanolone, a hormone created by the placenta late in pregnancy, to the developing fetus can leave children more vulnerable to brain injuries associated with ASD. Losing the supply of ALLO alters cerebellar development, an area of the brain critical for motor coordination and social cognition, impacting the post-birth development of cerebellar white matter. An experimental model revealed deficient cerebellar white matter resulted in social impairments and an increase in repetitive behaviors, two hallmark features associated with autism.

Allopregnanolone (ALLO), a hormone made by the placenta late in pregnancy, is such a potent neurosteroid that disrupting its steady supply to the developing fetus can leave it vulnerable to brain injuries associated with autism spectrum disorder (ASD), according to Children’s research presented during the Pediatric Academic Societies 2019 Annual Meeting.

In order to more effectively treat vulnerable babies, the Children’s research team first had to tease out what goes wrong in the careful choreography that is pregnancy. According to the Centers for Disease Control and Prevention, about 1 in 10 babies are born preterm, before 37 weeks of gestation. Premature birth is a major risk factor for ASD.

The placenta is an essential and understudied organ that is shared by the developing fetus and the pregnant mother, delivering oxygen, glucose and nutrients and ferrying out waste products. The placenta also delivers ALLO, a progesterone derivative, needed to ready the developing fetal brain for life outside the womb.

ALLO ramps up late in gestation. When babies are born prematurely, their supply of ALLO stops abruptly. That occurs at the same time the cerebellum – a brain region essential for motor coordination, posture, balance and social cognition- typically undergoes a dramatic growth spurt.

“Our experimental model demonstrates that losing placental ALLO alters cerebellar development, including white matter development,” says Anna Penn, M.D., Ph.D., a neonatologist in the divisions of Neonatology and Fetal Medicine, and a developmental neuroscientist at Children’s National. “Cerebellar white matter development occurs primarily after babies are born, so connecting a change in placental function during pregnancy with lingering impacts on later brain development is a particularly striking result.”

The research team created a novel experimental model in which the gene encoding the enzyme responsible for producing ALLO is deleted in the placenta. They compared these preclinical models with a control group and performed whole brain imaging and RNAseq gene expression analyses for both groups.

“We saw long-term cerebellar white matter alterations in male experimental models, and behavioral testing revealed social impairments and increased repetitive behaviors, two hallmark features of ASD,” says Claire-Marie Vacher, Ph.D., lead study author. “These male-specific outcomes parallel the increased risk of brain injury and ASD we see in human babies born prematurely.”

ALLO binds to specific GABA receptors, which control most inhibitory signaling in the nervous system.

“Our findings provide a new way to frame poor placental function: Subtle but significant changes in utero may set in motion neurodevelopmental disorders that children experience later in life,” adds Dr. Penn, the study’s senior author.

“Future directions for our research could include identifying new targets in the placenta or brain that could be amenable to hormone supplementation, opening the potential for earlier treatment for high-risk fetuses.”

 
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