Why I Study Science…and Where I Stand Moving Forward

A Personal Aside

I have been thinking a lot lately about why it was exactly I got into science and have been pursuing an academic career. I thought I would take the effort to collect my thoughts here in case my ramblings prove helpful for anyone else.

It is actually rather simple to explain why I am in science. To be perfectly blunt, it is the culminated experiences I have had with my late twin brother Kyle who was autistic. My future scientific directions and decisions in life are shaped by what time I had with Kyle, and particularly by his death.


Reader’s Digest Intro to Kyle

Despite the world telling me different, I never felt that Kyle was broken. We watched Monty Python’s Flying Circus and Mr. Bean together, we went to movies together, he was my partner in crime whenever I wanted to misbehave as a child-and always willing to take the blame. In short, he was my little brother and best friend, nothing less than an integral part of me.

Important for this discussion, Kyle was never developed spoken language, he first learned to sign, then he got a facilitated communication device, basically a large keyboard with a speaker that would either let him spell things out or else he could push preprogrammed keys to speak phrases. Very rapidly he progressed beyond the canned functions and the touch talker-as we called it-was just set so Kyle could type. In fact, Kyle was such a good typist that in high school he showed an aptitude for medical transcription, since he could type fast enough to keep up with the tape, but also never misspelled words.

Relatively early in life we learned another thing about Kyle. Like me and my father, Kyle was a voracious reader. We always thought he was just scanning through pages of magazines and newspapers to look at the pictures or else stim (visually self stimulate), but he was in fact reading them. We found this out one day when there was an interesting article and we caught him slowing down just enough we could see his eyes scanning the page as he was reading. Basically, we caught him being just like the rest of us. He was clearly intelligent, just not able to speak.

When it came to school, Kyle was actually better than the normal kid. He sat in class with his laptop taking notes. He actually loved school and loved learning. He enjoyed his history classes and was easily able to pull B+’s and A’s in classes that were known as valedictorian killers. To be frank, I never saw him happier than he was walking in the hallways and heading into his classroom for another session.

This love for education was so profound, that when I left for college Kyle had a very hard time because he was not allowed to come attend school with me (We withheld 1 grade unit so he did not officially graduate from high school-this was the only way he would remain eligible for adult school from ages 18-22). Since he could not go to college, Kyle developed an interesting learning strategy: he watched educational TV all day on the local PBS station. He also started to start typing entire chapters of Utah and US history textbooks we had around the house, and then answer the questions at the end of each chapter. He found a way to keep learning regardless. To this day I regret Kyle not going to college with me. I feel that we forcibly held him back and never let him achieve his potential-and it haunts me, I think it always will.

Fast forward 14 years. Out of nowhere Kyle was admitted to the hospital with acute kidney failure and dangerously variable blood pressure. His lungs aspirated. Long story short, his last few days were spent on dialysis and Propofol/Morphine anesthesia surrounded by family as we impatiently awaited results from the pathology lab that would only finally arrive a month after his death. The doctors kept recommending we let him linger, just in case something was learned from the pathology report that never arrived, but we knew it would have only protracted Kyle’s Purgatory. So we let him go…

While in the hospital, behind my family’s back I contacted the lab I was going to do postdoctoral work in to donate Kyle’s brain. My only thoughts were that he was highly functional, no history of long term epilepsy aside from two seizures we knew about, and really intelligent. In the end, his organs were shot as they were highly infected, but his brain and his eyes went to scientific research with people I trust.

Kyle’s final gift to the world was the knowledge we can gain from studying his eyes and his brain. This is the only comfort that came from his untimely death.


Experience Guides my Life Choices

One of my early memories was having a research team from UCLA and the University of Utah come to my house to administer the autism questionnaires to Kyle and me, give all the members of my family some cognitive assessments, and take blood samples for genetic testing. The early results of these studies are collected in these papers, as well as Here, Here, Here, and Here. The most tragic to me is this one because Kyle died while it was in press. His datapoint is in the wrong column, by less than a month. This paper suggested that individuals with autism die early, of at best poorly understood reasons.

Obviously, having early experiences with a bunch of researchers playing brain games with me, letting me watch and ask annoying questions as the phlebotomist collect blood samples, and being able to read science papers in which I was a research subject was nothing short of spectacular. By the ripe old age of 10, I had made it through the two banker’s boxes of research papers my mother kept in the basement about autism. To be sure I did not understand it fully, but I was hooked. It was also about this time I decided wanted to become a neurobiologist; primarily because that was the term that the team leader of this research (Dr. Edward Ritvo) used to describe himself in one of his editorials in which he proposed studying the “neurobiology” of autism rather than as a purely psychological disorder.

At the same time as I was learning about autism from reading these papers, I was spending a lot of time immersed within the autism community in Utah. My brother was attending what was then called the Children’s Behavioral Therapy Unit (CBTU; Now the Carmen B. Pingree Center for Children with Autism) in Salt Lake City and my mother was working there. I had the opportunity to go in at times for “peer” and “sibling” training so I could learn how to help my family manage my brother’s behavioral outbursts as well as so they could learn about how autism in the family affected the nonautistic siblings. My mother also took charge of numerous summer programs to help the local autism community. This generally meant that I got to play with autistic kids and teens in the summer. In doing all of this, I spent a lot of time with kids with autism and their families. As a result, I have an odd sort of kinship with the autism population.

As stated above, I never saw these kids as broken, but rather as just different. Some of them, admittedly, did have crippling behavioral problems and epilepsy, but these seemed to be trivial to their potential, which was rarely achieved. What I did come to notice at these times was the culture of doctors trying their hardest to help these kids be normal by giving them experimental drug treatments. Kyle was even briefly on Pondimin, but my parents decided to discontinued treatment when he became thin as a rail and had a personality change-having Kyle be the Kyle we loved was more important than normal or typical social behavior. This lesson stuck. I wanted MY Kyle, not a perfectly behaved little robot for a brother. Over the years I have interacted with autistic children on lithium, other antipsychotics, barbiturates, steroids, among many other unproven off-label drug regimens. Every time I see this I want to grab the families and shake some sense into them and then go smack the doctors. I don’t do it because I truly understand the sense of helplessness these families feel, they do not see anyone helping, so they see grasping at straws (in this case experimental therapy) as the only logical move.

Why I Do What I Do

So, primarily because of my life experiences with Kyle, I specialize in the experimental analysis of behavior in animal models. More to the point, I develop experiments and collections of experiments that are specifically intended to be used as preclinical drug screens. This is explicitly so the mouse can become sufficiently useful that it never again becomes necessary for doctors to be required to use antipsychotics, barbiturates, or diet drugs as potential off label cures or treatments for autism, or any other disorder for that matter. I want to help give the families and doctors legitimate options.

It is my sincere hope that some of these behavioral outcome measures are useful not to help drug companies make the new miracle drug, but to remove the ineffective ones from reaching clinical trials. If a drug does not show a cognitive benefit that outweighs any side effects using a battery of tests specifically designed to be clinically relevant, then the rationale for moving forward with the compound is removed. Then we can all move on and design a better option.

I have avoided autism as a model in which to do this work for a few reasons 1) I am too close. I cannot be dispassionate or impartial to the results, so I may skew them unintentionally or get invested in a particular outcome. And 2) there is a new best or more complete mouse model for autism every 30 seconds it feels like. I don’t like moving targets so I have avoided that one. However, these reasons do not keep me from studying everything around autism. I have spent a lot of time studying Fragile X and related disorders as well as Down Syndrome, and I have worked at the MIND institute in Sacramento. What I have been noticing is that increasingly, the Fragile X field and the autism field are using each other’s outcome measures, so perhaps my early experiments in Fragile X may prove useful for autism work moving forward.

I also have chosen an additional focus in neuropathology. This was partially by accident, but I have always wanted to know what was different about Kyle’s brain and mine, and this seemed a good enough reason as any to move into this field. One of my first forays into neuropathology was actually a research rotation wherein I did a pilot experiment to assess any differences in microglia in the hippocampus of post mortem autism cases compared to no autistic control cases. I later moved more toward the Fragile X direction, but always keeping my periphery open to autism related cases.


Moving Forward

After Kyle’s death I have become angry. I am angry at the researchers trying to cash in and overhype whatever incremental “breakthrough” they have made. I am tired of advocate groups trying to shove useless bullshit and pseudoscience down the throats of families that have so little hope that they will follow any advice from an authority figure. And I am angry at the medical profession for forgetting that autism is something they have to consider in designing treatment options, both for brain or non-brain related disease. And I am sick and tired of society treating people like my brother as if they are broken. They aren’t, we are just too stupid to understand them, so we are unable to extend them the olive branch they so desperately need…

And I am furious with science in general for missing the point. We are not in science to cure anything. I say this because we cannot actually cure autism without knowing about it first. We have to uncover some of the essential truths at the heart of autism before we can even presume to treat it. We have to study both verbal and nonverbal autistics, low and high functioning autistics, and we have to study the entire population, not just a few select individuals that are easy to study and will sit still for a half hour during an fMRI experiment.

Honestly, it has been some time since I have actually seen a true basic science paper studying autism. Basic characterizations are spun as revolutionary ideas begging for therapeutic application. Experimental results are patented before publication and spun off into companies on nothing more than a whim and a prayer. Controversial theories entirely unsupported by fact are announced as gospel truths on the gravitas of authority; and are subsequently used to do cause harm to autistics under the guise of compassion.


And then all I do is I sit by and watch it happen. Right now thinking of this is frankly pissing me off. If all I have the power to do is to emphasize the good autism-related science on this blog and try to kill and discredit overblown, poorly interpreted studies via twitter, that is what I am going to do. I am done with sitting on the sidelines like an enraged fan screaming at the top of my lungs at a team that has long since stopped listening…

Now is the time for me to get involved…It is time for me to make the difference I have always felt compelled to make…My first step is to figure out how I am going to do it.

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40 thoughts on “Why I Study Science…and Where I Stand Moving Forward

    1. Thanks, this has long been a recurring theme in my mind. Particularly as related to genetic or developmental disorders. It does us no good to try to cure before we try to understand.

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  1. I am definitely moved by your passion.I have 3 children affected by autism and have spent the last 7 years trying to understand autism as best I can. The result has been to use nutrition and detox to diminish the symptoms of autism.We have achieved more than we thought possible. The school has even removed the ASD label from my son’s IEP.

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    1. Thanks for commenting. I am happy that your children are doing well. I wish you all the best. Good luck moving forward!

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  2. Hi Ryan,I am the parent of a child on the spectrum and now a behavior analyst, professor and someone who is very interested in changing the conversation that we have about disability and autism from the "fix them, they are broken" to how can we do better at including people with autism into society. I would love to chat with you! I am at the Hussman Center for Adults with Autism at Towson University. Our email is HCAA@towson.edu. I would love to connect to create change!Best,Rhonda

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  3. You are an ally the Autistic community desperately needs! I could feel the intensity of your passion for this subject in every word of this article and was tremendously moved. I look forward to reading more as you travel a path you seem pretty much destined for.

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  4. Thank you!I am sick and tired of everyone’s approach to Autism, and Im also tired of people, teachers, therapists continuously trying to get me to medicate my son, for his behaviors, as if a magic pill is going to make him any less Autistic, it’ll just make him less of who he is and possibly dull down some of the behaviors they don’t like. I won’t do it, and it doesn’t make them very happy. Its horrible that they somehow make you feel like a bad parent for not wanting to drug your child.

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    1. It saddens me that you have been made to feel as if you are a bad parent. Makes me more sad that I believe you. I would just say find the support you need to feel confident in your sons progress. Be honest to his failings and difficulties, but ALWAYS celebrate the good things that make you love him!

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  5. Thanks for sharing what motivated you to become a scientist and why it is you study what you do. Deciding to not work directly on autism because it was an issue of intregrity, that you were concerned about being too emotionally invested and being biased was a well thought-out decision on your end – but I imagine it was also hard. Have you seen situations firsthand where others have been biased and how is this situation best addressed for those who have chosen that path?There are people who start out not working in the field they began in and end up making discoveries because of their personal investment in the project, ala "Lorenzo’s Oil" – but I don’t know how often this happens, and how often this happens where critical gains in the understanding of a condition are made."I am angry at the researchers trying to cash in and overhype whatever incremental "breakthrough" they have made."Yes. This and reporting in the media which overhypes research findings and also misstates those findings anger mine. They can mislead the public and annoy other researchers who first read the announcement and then go directly to the publication to sort out what’s really at stake."I am tired of advocate groups trying to shove useless bullshit and pseudoscience down the throats of families that have so little hope that they will follow any advice from an authority figure."That is problematic. And it’s not just groups but it’s also parents who unwittingly pass on misinformation to one another without fact checking it first. It’s the peddlers of herbal formulas and lifestyle changes for which there is no evidence it does any good and where there may be a potential for harm. There is an entire cottage industry out there which thrives on others’ desperation and ignorance, and it’s ready for conditions of all kinds – whether or not those conditions actually are in need of their "help"." And I am angry at the medical profession for forgetting that autism is something they have to consider in designing treatment options, both for brain or non-brain related disease. And I am sick and tired of society treating people like my brother as if they are broken. They aren’t, we are just too stupid to understand them, so we are unable to extend them the olive branch they so desperately need…"I think that’s pretty much it. A lot of us are too stupid to understand what’s going on, and with more observation and less labeling and fewer assumptions, we’d be closer to understanding. I don’t see what the drive is to be neurotypical. Or "normal". Who gets to decide what that means? And what if in some ways what passes as "normal" from some set of standard is actually dysfunctional and suboptimal? I think there are many ways to be, to exist in this world and they have their advantages and disadvantages. But who gets to decide that, and do we let them decide (and define) that for us?

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    1. I’m not sure I’ve seen others biased due to siblings (I try and stay out of personal lives), but I have seen researchers start to believe their own hype. This leads to what I see as a sort if scientific desperation, or a race to cure something. This scares me. It is FAR too easy to over interpret our own findings or not consider alternative explanations. That I have seem in spades within the Down Syndrome, Fragile X, and autism research communities. Sometimes we need to take a step back and breathe. I feel u can do great work in say tusk because if my perspective, but I know Kyle will be a prism through which all data will be viewed-and prisms will always distort. I agree with your opinions. I see a lot of hyping that I don’t understand, other than in the light that funding is needed and potential cures get funded. This is where my fear resides. We aren’t funding basic science to understand disease outside the context if curing. The researchers that pursue that avenue have to do so as a side project-with other research directions that are more easily translated as higher priority. It’s sad really. The last comment I have is that I think the advocacy groups are honest in their zeal, we as scientists have let them down by attacking each other and discrediting people not as much for bad science as bad PR. If we carefully and patiently explained ourselves and our criticisms of others work, it would do a lot to move the conversation forward. What we are doing now only breeds distrust in everything else we say.

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    2. I’m not sure I’ve seen others biased due to siblings (I try and stay out of personal lives), but I have seen researchers start to believe their own hype. This leads to what I see as a sort if scientific desperation, or a race to cure something. This scares me. It is FAR too easy to over interpret our own findings or not consider alternative explanations. That I have seem in spades within the Down Syndrome, Fragile X, and autism research communities. Sometimes we need to take a step back and breathe. I feel I can do great work in autism because if my perspective, but I know Kyle will be a prism through which all data will be viewed-and prisms will always distort. I agree with your opinions. I see a lot of hyping that I don’t understand, other than in the light that funding is needed and potential cures get funded. This is where my fear resides. We aren’t funding basic science to understand disease outside the context if curing. The researchers that pursue that avenue have to do so as a side project-with other research directions that are more easily translated as higher priority. It’s sad really. The last comment I have is that I think the advocacy groups are honest in their zeal, we as scientists have let them down by attacking each other and discrediting people not as much for bad science as bad PR. If we carefully and patiently explained ourselves and our criticisms of others work, it would do a lot to move the conversation forward. What we are doing now only breeds distrust in everything else we say.

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  6. Great post, and I am so sorry that your brother has passed. Your description of the autism field reminds me a lot of the Alzheimer’s field when I was still very active in this area. I got so fed up with it I started writing editorials in scientific journals about what was wrong with the field. Doing such things makes it hard to get grants and get published! You really need a top leader in the field to convince the others to start thinking critically and stop promoting hype. Sadly, and especially in this funding environment, that may be just a dream.

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  7. Our life is a faint tracing on the surface of mystery, like the idle curved tunnels of leaf miners on the face of a leaf. We must somehow take a wider view, look at the whole landscape, really see it, and describe whats going on here. Then we can at least wail the right question into the swaddling band of darkness, or, if it comes to that, choir the proper praise. Annie Dillard

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  8. wow! moving fron beginning to the end!I am a predoctoral student aapiring to to develop a career as an academic in autism research. particularly understanding its genetic architecture.I hope my results never get hyped.Any advice for me?

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    1. I would say one good step is to take some time to get to know some individuals in the autism community, so you can see the differences and uniqueness these kids and adults with autism range. As to hype, just don’t let yourself fall into the trap if declaring findings as revolutionary or cures. Parents DO read papers, and they will take you as an authority.

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  9. Wow, so glad to here someone validate what I see so often and can’t not express. Acceptance and compassion for differently abled members of our society is what is so needed. My son is 12 and on the spectrum, so smart and able. I have gotten very selective as to who I let influence me and work with him. Snake oil salespeople know their is money to be made off this group and I have learned the hard way many therapies do nothing more than turn your child in to an obident pet. My child is so much more than a label. I want to teach him that he should never let what others define him as with their own crippled mindset, be his own definition of how he see’s himself. We are all gloriously made and until we are ALL equal, then none of us are. Thank you for your passion and anger and resolve! Your writing helped me.

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    1. Thank you for the kind words of support. I applaud your efforts to take control of your child’s health outcomes. As a parent it is important that you realize you are the one who spends the most time with your child, and thus see more if their behavior than us scientists or doctors. Keep up the good work!

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  10. Can’t wait to hear what you have to say! There is so much controversy and so many possible avenues that parents can take. It would be nice if someone could help us find the right path. I would love to know your thoughts on vaccines and brain gut connection:)

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    1. I usually avoid those topics, but here I go: I think vaccines are not important enough as a contributor to autism to worry about. The levels of autoimmune disorders in the autism population are better topics to pursue, namely because we can study them. The vaccine link ranges from flimsy to entirely absent depending on the study. The science just doesn’t support it. For gut-brain I think we are asking the wrong questions. I think the same process that results in altered brain development also effects the organs. I have no evidence because it hasn’t been rigorously studied. In other disorders there is rampant pathology in organs that was found by accident-a pathologist looked and was surprised. That said, if there is abnormal development in the organs, then any brain-organ interaction would be off. This also bears scrutiny.

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    2. to Ryan:
      I think the levels of autoimmune disorders in the autism population are related to vaccine ~reactions~ . Why else would a child with Dravet’s be thousands of times more likely to have a febrile seizure than a typical kid? (Twenty five percent are also autistic.) To the second DTP, is my understanding (memory t-cells? IDK…) You can tell me I’m full of it. Most people do…both sides.

      Your brother sounds fascinating to me. Behavior is so removed from intellect in so many autistics, what I noticed in the residential school I attempted to teach at about 7 months. I hated my son taking ritalin, but I did it so he didn’t end up in a special ed classroom full time, and it worked for that. Regular classroom with resource pull out when needed. His middle school resource teacher said he was the smartest kid in the class…I thought he meant the resource room…he meant the 800 kids in his grade. We eventually had to homeschool because of Dyscalculia, then he went on to tech and is a machinist.

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  11. Michael, thank you for this. The researcher who has come closest to actually reflecting the experiences of those of us with autism is Dr. Martha Herbert. I have tremendous admiration and respect for her having gone out on a scientific "limb". Even there, as an MD in high position and esteem, there are things which she cannot say or support without losing her credibility and taking an unjustifiable attack and fall the way poor Dr. Wakefield did.If you really want to study what’s actually going on with autistics, I’d love to collaborate. I’m working on an assessment tool, and hope to have it ready for our own research, about ourselves, shortly. Frankly, I don’t expect the scientific community to pull its socks up anytime soon.Courage to you, Jackie McMillan, B.E.S., Asperger’sThriveWithAutism.ca

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    1. I think having a better tool for assessment is essential. I liked Dr. Ritvo’s efforts to develop an Aspergers specific tool (to individuate autism from pdd-nos from Aspergers), and there was some measure of success. But to have a tool developed from within the population? That would be amazing. From outside, to be honest, we as scientists are often evaluating what we see as odd or abnormal behaviors-but ignoring the cause or reasoning behind it. As such, we are literally missing the forest because we have focused only in a single pine cone. Having a tool whereby you are asking your peers about their behavior would definitely provide a wealth if data the rest if us would miss because we never thought to ask the right questions!

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  12. Wonderful post. Moving and thought provoking. Thank you. I agree completely with all of your assessments save one. You say, "We have to uncover some of the essential truths at the heart of autism before we can even presume to treat it," but there have been many medical breakthroughs made by empiric research. I share my frustration with research spun as "potential" therapeutics, "translational research" often being mediocre basic research pretending to be clinically relevant. Good clinical research can and should progress with the patient’s short-term needs addressed practically, not theoretically. Basic research should be done to probe underlying mechanisms and offer long-term hope for change. The in-between stuff that gets spun as a breakthrough bugs me too.

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    1. Thanks for the comment. I think you just said something I was trying to say but failed to convey properly. My undecidedly un humble opinion is that the useful understanding we have concerning autism as well as the treatment options came from empirical research that uncovered a fundamental process or mechanism. This was then taken to the next step. It is the attempt to skip this first step (under the guise of translational science) that gets my goat.

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  13. Your post touched me deeply. I’m also an autism sibling, have similar concerns about autism research, and introspect constantly about the impact of my personal background on my research questions. I can’t speak to your research, but you’re already making a difference on this blog and on Twitter.It sounds like Kyle was an amazing person. Sorry he’s no longer with us. It’s frustrating that we’re so far from understanding people like him, who can read and think at high levels, but not speak. I agree with you 100% that we can’t cure autism, or even decide if it’s something that needs to be cured, until we know what it is…and we’re so far from that point. And we certainly can’t know what it is if we study only those who can easily be given standardized tests or put in a fMRI scanner. We need more creative thinking about how to test and collect feedback from those with low IQ and verbal abilities in particular. Dr. McGonigle-Chalmers has done some amazing stuff with low-IQ, nonspeaking kids, but she’s the only one I know of. I look forward to hearing what you plan to do to make even more of a difference. I have huge confidence in your critical thinking and caring. Whatever you decide to do, I’m sure you’ll help at least a few people.I’d love to collaborate with you if you ever do a project that involves cognitive psychology methods.-mosaicofminds

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    1. Thank you for your comment. It is tough when one sees the beauty and potential in our loved ones with autism and have a hard time convincing the world of it. Obviously it has long been on my mind as well. I think the way forward is to take a step back and look at the whole picture, not just the single minded quest for a cure. And that will definitely take time.

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  14. I just want to comment on the fact that most autistics have very low potassium levels and it can also fluctuate a lot, when combined with any trauma, it gets affected and goes even lower. With kidney problems, it can spike higher and drop again lower, accounting for blood pressure changes, the periodic high potassium levels would make the body eliminate sodium, which will have the blood pressure drop again. Whenever the potassium then becomes dangerously high or low (within minutes) the person can suffer an arrhythmia or organ failure. This aspect has a profound impact on the sensory system, causing daily discomfort to various extent. I have just started putting together a research study proposal which will hopefully result in being able to better manage potassium/sodium/magnesium issues via supplementation and diet. If you would like to participate in setting up the proposal or overseeing the creating of the proposal, please let me know, as I am not a scientist, but a graphic designer – benjine@graphicouture.com

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    1. I agree with your thesis entirely. Dealing with these mineral concentration issues is extremely important. Unfortunately, the tendency in science is to treat autism as a brain disease as if individuals with autism were just little heads floating around. As to your proposal, I think it is a great start. I’m not that kind of scientist unfortunately, but you can always take the idea to researchers or foundations to see if they can run with it. Good luck!

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  15. Thanks for sharing, I enjoyed reading this. Not sure how I came across this article, I can’t remember. I have two boys with autism (5 and 3) who have come such a long way, partly due to the wonderful people at the MIND. The older one was part of the ESDM study, which allowed the younger to be in the Infant Sib Study, which allowed him to be monitored for a diagnosis that did come. I am so thankful for the people that have worked with my kids, and with me, because they have had a direct influence on our lives. But I am also grateful to people that I don’t get to meet, like you and others who do the research or the behind the scenes work that has an indirect influence on us and others. So, thank you! Our current struggle is simply figuring out how to help the kids be included with their friends at school. They can be such happy, thriving kids when we support them how they need it. I never imagined myself raising such smart and loving kids, and yet here I am.

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  16. May I email you a research proposal that I created, which I mentioned above in 2013? I could not find an email address, if you could please give me one that would be great. Benjine.

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  17. Reblogged this on Under Your Radar and commented:

    Yes. This.

    “Honestly, it has been some time since I have actually seen a true basic science paper studying autism. Basic characterizations are spun as revolutionary ideas begging for therapeutic application. Experimental results are patented before publication and spun off into companies on nothing more than a whim and a prayer. Controversial theories entirely unsupported by fact are announced as gospel truths on the gravitas of authority; and are subsequently used to do cause harm to autistics under the guise of compassion.”

    This is a fantastic read from a real ally. It addresses a number of important points I think any responsible scientist will explore. I get a little tired of “autism science” being the equivalent of tossing cooked spaghetti against the wall to see what works.

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