Friday, October 7, 2022

Comments by Twilah Hiari

Showing 42 of 42 comments.

  • I agree with you Planet Autism–that Asperger’s and autism are related. I meant that they’re substantially different, but I think they are still related. I’m sorry if I wasn’t more clear in my blog. I don’t think I would have regressed if I hadn’t already had Asperger’s, which as you know is generally considered to be part of the so-called spectrum. Since I’ve written this I’ve been in contact with two other people who have regressed as adults. I definitely think there’s a sort of association that makes this possible. I’ve also observed the same thing you have–Asperger’s parents with children who are more severely autistic. Though there are neurotypical parents with severely autistic kids too.

  • It’s an incredibly long story with a complex intersection of mechanisms involved. You can find part of what happened here: Months after I wrote the post I just linked to, I also found out that immune system dysfunction played a role as well. I write about that on my blog: Those things are still just the tip of the iceberg though, and I’m working on a memoir of the entire complex series of medical events that facilitated my regression. I’ve reached the limit of links MIA permits for comments, but on my blog I write about what I’ve been doing to heal my gut, immune system, and brain.

  • The key difference between my position and the ASAN policy statements you’ve quoted is that I don’t want assistive technology or supports. I don’t want physical therapy, occupational therapy, speech therapy, or supportive typing. I want to rectify/reverse the foundational causes of my intermittent inability to speak as well as the many of my other challenges I experience that fall under the umbrella of autism. This means I want to fundamentally change my neurological experience. I’ve had some degree of success changing my neurological experience, and with time, I think even greater transformation is possible. Simply making those statements in online forums for autistics has led to me being attacked and banned. That’s the tyranny I’m talking about–that there are other autistic individuals who have decided they can police my lived experience and tell me that because I share the same diagnostic label as them that I’m not permitted to proclaim that I’m trying to heal. Yes, I call it tyranny when another person declares themselves sheriff of my body and brain.

  • I don’t have time to respond to all of Au Valencia’s points, nor do I have an interesting in engaging on some of the more bizarre ones, but here are my thoughts. 1. I agree, a more clear characterization would have been to say ‘the neurodiversity movement’. Long titles aren’t as compelling though. 2. I didn’t say being removed from a group is bullying. Re-read the paragraph. 3. I’d like to engage in conversations with these ND activists you reference as I hadn’t been exposed to that well rounded perspective. 4. I’ve tried to engage in constructive conversations, which, I’ll point out, don’t involve spurious accusations of hate speech. 5. I can recommend some primers on logic and argumentation. Hyperbole is not your friend. 6. I’ve made comments contrary to the ND movement in forums, yes. I haven’t encouraged death or harm, nor have I stalked. Who is doing that? 8. Regression is real, and since I’ve written the piece, other adult autistics who have experienced regression have reached out to me to have detailed and productive conversations. I’m not terribly fond of the levels, but they are an easily understood reference point. 9. Are you serious? 10. For real? 11. Guess that’s why Silberman got ASAN Ally of the year in 2015. 12. Not logical. 13. Reference hyperlinked in the piece. 14. I’d love to be part of these conversations, but I keep getting banned for simply discussing my experience. 15. I’ve never read that rationale for identify first language anywhere. 18. People with behaviors that would be characterized as autistic didn’t exist in Somalia, so no word was created to describe such behaviors. 19. Genetic racial health inferiority? Extrapolating that is like saying enhanced melanin production that affects Vitamin D levels = inferiority. Attaching a value judgment of inferiority to a biological fact isn’t coherent. 21. I have. 22. Huh? 24. Where did I say anyone wanted to increase pollution or poisoning? 25. I’d be delighted to have a conversation about this. 25. I said investigation into the prevention of the most incapacitating presentations of autism. Preventing a certain manifestation of a condition does not equal preventing people–because the condition is not inevitable or inseparable from the person. 29. Yes, our goals are the same, so why can’t we have a civil conversation? 30. Does your ad-hominem allegation against Torrey affect the stats?

  • Leads me to question whether the moms are depressed because of neuroinflammation, and the seek out drugs to try to mask the symptoms of a deficient microbiome that fuels the neuroinflammation.

    Then they give birth to children who not only get insufficient microbes during the birth process, but have been bathed in SSRIs in utero. What do you get? Guaranteed neuroinflammation, which is a hallmark of autism.

  • Hi Jmcbk,

    I can’t give medical advice, but if I were in your shoes, I’d do lots of reading about ADHD meds and potential side effects, specifically on developing brains. If you’re in a position to do so, you may want to visit one or more health care provider who are open to non-pharmaceutical perspectives on ADHD, or are at least willing to have a fruitful conversation about the risks vs. potential benefits so that your decision is as informed as it can be. You know him best, I’m sure, so if you don’t think the labels he’s been given are interfering with anything important, you may just choose to ignore them altogether and just let him be him. If his reported attention challenges are really interfering with learning or other important things, maybe a different evaluation or approach would help to make sure a problem with his learning environment not meshing with his learning style isn’t really the problem, rather than an attention issue on his part. Other things I’d look into, or try to find a provider with knowledge in, would be the effect of diet on attention and behavior. Some small dietary tweaks work wonders for some people.
    Regarding education, one child’s ‘least restrictive environment’ is sometimes another child’s greatest obstacle. Whether a child will do better in a smaller class or in a mainstreamed class depends a lot on the child, the teachers, and as you’re aware, the other students. Trust your gut and keep paying attention to the communication you get from your son. If he starts in a small class this fall and seems to be doing okay, keep going from there. But if you see problems, you may want to keep pushing for other options. Good luck to you and your son.

  • Monica- an autistic adult friend and I have come to the conclusion that many of us with behaviors/symptoms that are associated with autism are in the same style of boat, but the boats have different builders. I’m glad you understand the spirit of what I’m trying to describe with the term pseudo-autism.

  • Daniel Au Valencia- I stand by my choice of the words ‘more autistic’. As much as I dislike the fact, right now in the US the DSM is the authority in terms of describing what constitutes autistic. As described in that text, the cornerstone of an autism diagnosis is: “persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays”. I experienced an exacerbation of my difficulties in social communication and social interaction when the microbial changes and interrelated brain changes occurred. Therefore I became more autistic. And yes, my exacerbated autism is bad for me, because I, like most people, live in a society that requires one to be capable of consistent receptive and assertive communication in order to survive, and I lost the ability to both hear and speak consistently. I didn’t mention it in the piece, but I also have visual issues that affect my ability to read sign language, so my access to communication was all around very badly compromised.
    I’m not going to pretend that change was good or neutral–it was negative. I experienced losses that I didn’t want to experience and that I cannot compensate for. I can try to embrace these changes all I want, but that’s not going to pay my mortgage (deficit in social communication in work environments). It’s not going to allow me to attend the meditation teachings I used to enjoy but can no longer understand due to my auditory issues (social communication). It’s not going to let me maintain linear thought when I’m trying to make a simple or complex decision and I’m interrupted by a loud sound (social communication is thereby impaired when I can’t think and respond accurately in all environments). What distinguishes my unhappiness with these changes from the notion of something as intrinsically bad is that if the world were different and full of captions, work opportunities for people who require complete silence, and the blaring music and motorcycle sounds that permeate the walls of my home were eliminated, I wouldn’t have any problems at all. But that isn’t the world I live in, so yeah, my exacerbated autism is bad, not inherently, but because of its implications for the extent to which I can participate in our very acoustically unfriendly society.
    Yes, I would like to see the DSM diagnosis for autism (and all of the other diagnoses contained within that text) be replaced by more empirically verifiable metrics and conditions. But right now the DSM definition is the only definition I can appeal to, despite my criticism of it. I think in the future when a truly scientific system like Research Domain Criteria replaces the DSM, a necessary component of an autism diagnosis will be the presence of autism specific microbes, whatever those turn out to be.

  • I completely understand, that is my exact relationship with sound also. Audiologists in the know would call that hyperacusis, but as you clearly have experienced, others in different branches of the medical profession might be tempted to become much more creative in their labels for what you experience.

  • truth- I think ECT is just one of the more recent manifestations of inherently damaging modalities that are being tried in attempts to “treat” any neurodivergent behaviors labeled autistic. I think it is child abuse and that anyone involved, practitioners, parents or otherwise should be charged with child abuse.

    The precise mechanisms of ECT aren’t completely understood when it is used on neurotypical people, so to use it on neurodivergent minor children is to plunge headfirst into a clinical experiment that can offer no valid information. If we don’t know how or why autistic brains are different, and we don’t know how ECT changes any brains, then the effect of ECT on an autistic brain is an unknowable outcome.

    But it brings up a really interesting point. We as humans have a long way to go before we achieve a thorough understanding of any brain, neurotypical or neurodivergent, but we have a medical industry that doesn’t hesitate to promote “treatments” for brain conditions that are not at all understood.

  • Great comment Bradford, as are all of the comments here. I did laugh at the point where you said I shoulda known better. Laughed and then had to log in to respond — I do think I knew better on some level, but being on the SSDI rolls will make a person do desperate things for a paycheck. I’m not sure which is worse, fighting off doctors who chased me with drugs that hurt my brain or dealing with the SSDI people. Doctors chased me and government employees run from me. At least that’s what I’m led to conclude this based on the multiple emails I have sent to government employees about the Ticket to Work program that just seem to go into a big void based on the lack of response or helpfulness I get.

  • What a fascinating story maradel! I’m glad that getting spayed was so beneficial to you. It is my dream that experiences like yours can one day be more carefully catalogued and analyzed so that the mechanisms behind them one day become better understood, rather then dismissed by the mental health community as you experienced. I agree that research in general is greatly disadvantaged due to the funding issues and funding interests involved. I’m so glad your hormone story had a happy ending!

  • I just realized I didn’t address how you say you aren’t implying life without sex is worse than death by suicide. Here’s how: The discussion at hand is about PMDD, which is a very profound mood disorder than has and does kill women. If you are talking about something non lethal, you are talking about PMS and we are talking about 2 different things. I do not think hysterectomy is appropriate for PMS. I have asserted that to date, the only known cure is hysterectomy. You responded with you legitimately tragic story of how hysterectomy destroyed your ability to have sex. That was the dichotomy that was set up. I’m just laying this out so that you can see how conclusions are drawn. That is all. I truly am sad for how your surgery went and wish you well. I’m going to withdraw from this conversation now, as your argumentative strategies are not productive.

  • If it is true that the disorder has only been found is western women that is because it has only be researched in western women. Discussion of the dynamics of where research is conducted is another conversation. I personally know women from Asia and Africa with PMDD. An absence of study based evidence indicates one thing and one thing only in this case: an absence of systematic research. I can’t offer statistics, that’s why I’m asking for research. You see the little loop we’re going in here? I’m asking for more research to be done and you’re responding with “there’s not evidence” when one needs research for more empirical evidence. It would be comical if we weren’t talking about a life threatening disorder.
    And I’m not simply extrapolating from my experience, I’m basing my remarks on interactions I’ve had with a lot of women with PMDD. No I did not do formal research, I don’t have the resources to do formal research hence my up front use of the word anecdotal. But you just really reinforced how gaslighting happens to people with conditions that may have existed for a very long time but are not yet well understood due to lack of research. But fortunately, this came out just a few days ago and shows me that at least researchers are interested in PMDD:

  • Then we’re actually in agreement because of course I’m all for informed consent and disclosure of risk. But I need to point out that we are actually be talking about different surgeries. You explained that your post surgical problem was with your vaginal cuff. Clearly it was serious and affected you and still affects you very badly. But to cure PMDD the cervix doesn’t need to be removed, because the cervix plays no role in PMDD. So unless women with PMDD have another medical issue, the cervix can stay, which means there is no vaginal cuff, and therefore there are no possible complications with a vaginal cuff. Of course there can still be complications, as it is major surgery, but as I think you now understand, I simply am advocating that women should be informed and granted the ability to opt for a surgical cure.

  • PrettyPurplePill, I’ll also mention that I’m now disabled as a result of the psych treatments I was coerced into having prior to my hysterectomy. I didn’t mention that in the article because it was outside the scope of the writing. I am SSDI qualified disabled due to psych treatments that injured me that could have been avoided entirely if I had been offered a hysterectomy instead. I can no longer work or have sex due to the psych treatments I was offered instead of hysterectomy. And I prefer this state of disability to my PMDD experience. I hope that helps you with perspective.

  • I would like for there to be an effective treatment for PMDD that is not surgical, that’s why I’m promoting more research into PMDD. But currently hysterectomy and oophorectomy is the only known cure. No one is ‘jumping into having their ladyparts cut out’. I’ve interacted with scores of women with PMDD and most attempt other treatments for years prior to hysterectomy, all while many are too disabled by PMDD to work or be productive in they ways they might choose. The argument I was making is that PMDD can kill women, that is a fact. You seem to be suggesting that death by suicide is preferable to the possibility of life without sex. I’ll just let you reflect on that and draw your own conclusions.

    It is my position that women who request what is currently the only known cure be treated as autonomous adults capable of autonomous adult decision making and be granted hysterectomies if they decide they would like to have a hysterectomy rather than PMDD until they reach menopause, should they be fortunate enough to reach menopause. I am sorry that your hysterectomy went badly. Yes, some hysterectomies do go badly, but I would like for grown women to be treated like grown women who have ownership of our bodies, especially when certain bodily organs are killing us. And of course male hormonal issues aren’t treated with castration, I’m not aware of any male hormone issue as destructive as PMDD. That’s really a red herring if you want to talk about logic. And medical research pertaining to men has historically been a greater priority, but don’t blame me for that.

  • FeelinDiscourged I agree with your point on wording. I chose the words I did because they are references that are easily understood. I am absolutely skeptical of the concept of mental illness, but I didn’t choose to address that here as it was too far outside the scope of the piece.

  • I won’t dispute the assertion that Eli Lilly and a team of researchers played a big role in PMDDs addition to the DSM, but I would caution against drawing erroneous conclusions from that set of events.

    PMDD almost killed me. My PMDD was cured by a hysterectomy and bilateral oophorectomy. After winning my battle against PMDD I found a vast community of women who have and do struggle with the disorder. The issue that women with PMDD come up against, time and time again, is that when they walk into a physician’s office and complain of mood symptoms that correlate with their menstrual cycles, no credence is given to the women’s reports.

    So rather than women with ‘ordinary’ depression, “getting lumped into a diagnosis of PMDD,” as Nada Scotland fears, women with PMDD are getting diagnosed with major depressive disorder, bipolar disorder, or borderline personality disorder. The latter two diagnoses reflect the cyclical nature of PMDD or the appearance of emotional lability due to the cyclical nature of PMDD. The differential diagnosis that should be happening isn’t happening, but it doesn’t err on the side of excessive PMDD diagnoses.

    The result is the same. The women with PMDD who report that their mood challenges have a hormonal basis and a clear correlation with their period are ignored. But they are still plied with SSRIs, which do not have any long term effect against the psychological manifestations of PMDD. PMDD only responds to hormone agonists like Lupron, or surgical correction, such as I had.

    The core issue is that PMDD is an endocrine disorder, and as such should not be treated by psychiatrists. Since it is a health issue that exclusively affects women, PMDD is under researched. Perhaps a solution short of a surgery will treat it in the future, but to date, SSRIs are not the solution, and Ely Lilly’s role in the relegation of the disorder into the diagnosis manual of psychiatrists is a big step in the wrong direction.

  • Julia, I’m so sorry you had such a terrible experience as well, but I’m very happy to hear that you have moved beyond it. I’m saddened but not surprised that you were told you had a cultural/ethnic/religion based problem when the actual problem is with health care culture. These biases are killing us, but if people like you and I keep speaking up, I hope we can promote change. I wish you the best!

  • Great question oldhead. Excellent question actually. Too complex to answer here with any degree of completeness. I think it has a lot to do with peoples’ assumptions about phenotypes and speech. Like most outdoorsy people, my skin is darker in the summer. I noticed a seasonal correlation to a certain degree. Then there is my speech, which is closer to “standard American English” than an African American dialect. Funny to me though is how audiologists identify my speech as an “otitis media dialect” because my pronunciation of certain sounds is softened in correlation to how I learned language through fluid filled ears as a small child.
    What it boils down to though, is people have expectations of what black looks and acts like and what white looks and acts like. To specific people at specific times I resembled one more than the other. And rather than ask me how I identify myself, all of these practitioners were comfortable enough with their assumption to put it in my medical records.

  • I didn’t state or imply that hand holding was a benefit. I made that statement because the previous commenter seemed to think there is one single middle class educational experience that we all have. I was seeking to correct that assumption. I am sorry that your educational experience failed you as well. Many people are failed by education for many different reasons.

  • Nomadic-I didn’t have the luxury of being “blacksheeped” by a “learning disability” [your term] growing up. I was literally black and I was “educated” in a substandard inner city school district in the 1980s. The only kids who got learning disability labels were badly behaved boys. Everyone else got crammed into an overcrowded classroom and treated interchangeably. There were no IEPs. There was no hand holding. This was a different generation and a different socioeconomic scenario. So my inability to understand lectures was overlooked for my entire school career. Not much is expected of poor minority children you see. It was overlooked right until I dropped out after never passing a grade beyond 8th. Yes, I continued to get promoted through 11th grade, but it was not because I had achieved promotion, it was because that’s the way school in the hood works. I then fought my way through college, skipping lectures I couldn’t understand but doing fine because I read the books. Losing participation credits for never speaking in class because I couldn’t figure out how – but not knowing why. I then had to give up my dream of law school because I simply couldn’t follow the law school lecture and debate format. So I don’t deserve “allowances” because I’m just a little different? I have a legal right to an education that takes into consideration my APD. What other civil rights would you have taken from me? Please understand the whole story before dismiss the pain of my experience because you have a problem with my language. I heard you and respect your opinion, now please respect my experience.

  • And so we’re clear. APD is not a psychiatric label or disorder. Psychiatrists, psychologists, social workers etc cannot and do not diagnosis it. It is not in the DSM. It can only be diagnosed by a specific battery of HEARING tests administered by an audiologist.

  • Okay, I’m making this my last comment on this issue. As we speak, I am typing with a broken left wrist, I can show radiology reports if necessary. I would be foolish to refuse to have my wrist labeled as “broken” and insist it just be acknowledged that my wrist is on a spectrum where my distal radius is less fused than the distal radius bones of other people. I needed a cast when I broke my wrist last month and I need a splint now. You have crossed a line from promoting liberation from labels to denying the validity of invisible disabilities that you don’t understand. My auditory issues are just as real as my broken wrist, and I need to DO things differently to function with them, just as I cannot lift heavy objects with my left hand right now. I am not the audiologist who decided to call this a “disorder” any more than I am the person who decided to call the process of a bone fracturing a “break”. This conversation has turned from liberating to invalidating.

  • That’s all fine and well. You can reject labels to your heart’s content. That is your right as an autonomous human being and as such I will support it. I will accept description/labels that accurately explain the etiology of my experience and the effect of my experience on my life. Such descriptions/labels have a net result of improving my quality of life through effective treatment protocol and recommendations for modifying my environment so that I can do the things I want to do and be the person I want to be. I’ll take a label/description any day of the week if it helps me live the life I want to live. Do you have a problem with descriptions/labels like “blind” or “paralyzed”? If so at least you are consistent. If not I would ask you to examine why not. Because of an invisible disability bias? Because of a conflation of description with oppression? I don’t know, these are just questions to consider. You trash your labels, I’ll embrace mine.

  • Jeanene, Thanks for taking time to respond and ask for clarification on what I meant. I am very sorry to have given the impression that I thought only people with physical differences should receive accommodations. I was just using physical comparisons because they are more easily understood.
    I think everyone should have access to whatever accommodations can be made to allow them to make the contributions that they choose to make or simply live the life they find must fulfilling. I believe wholeheartedly that people who are challenged by things that are not evidently physically based, whether the challenges is be mental or really of any variety, deserve the same accommodations as anyone. You are right, all of our struggles are equally challenging and our needs are equally valid. We are all worthy of having our needs met in order to live our lives most fully. I was just explaining the specifics of my situation to Nomadic as Nomadic’s perspective seemed to be I was simply over labeled and not in need of anything different or specific to succeed.

  • I’m still not sure you’re understanding what I’m saying. I didn’t say allowance, I said accommodation, such is provided by the Americans with Disabilities Act. Like people who use wheelchairs use ramps, and people who are blind use braille, I deserve an education I am academically and intellectually qualified to obtain. I can’t hear in certain environments, it is that simple. I am learning American Sign Language because my condition is not guaranteed to improve. I am also learning ASL because Deaf culture is amazing and hearing people can learn a lot from people who live full lives without spoken language. Like a Deaf person, I am entitled to accommodations like an ASL interpreter or to have information presented via writing/text instead of spoken language. If a room has good acoustics, the only accommodation I might need is to sit in front so I can see a lecturer’s face. I get that you don’t like labels. But labels are words and meanings of words change with time. You make valid points about labels but your point is irrelevant in my case. My concern is about changing a medical model that can ignore a physical disability but punish a person for having a normal psychological reaction to an disability that medicine failed to diagnose.

  • Nomadic – I appreciate your thoughtful comment but I want to clear up a potential misunderstanding. While I think it is accurate and healthy to understand that we all exist on a spectrum of neurological and audiological diversity, it is very ignorant to use that diversity as a basis for dismissing the legitimacy of audiological processing disorder and disorders that may appear similar to you. That would be like saying we all exist with varying ranges of mobility (indisputably true), from yoga master to quadriplegic, but to erroneously conclude that quadriplegia has no significant impact on a person’s potential for achievement in a society built for the able bodied. My APD is the result of multiple pneumonias and otitis media as an infant. It is a processing problem with genesis in infection. When ears are filled with fluid when children are first learning language, sounds are learned in a distorted fashion. I coped for 40 years with a persistent inability to understand speech in multiple environments, especially environments with background noise. I accurately hear very few words spoken to me. I have to use context clues and visual skills to figure out meaning beyond the 30-50% of words that my brain processes clearly in a quiet environment. This has had real life ramifications. I have never been able to fully understand lectures in an academic environment, so I only did well in classes where I could avoid lectures and obtain information from texts instead. I have never been able to get meaning from media such as movies, television, or radio as some of my coping mechanisms, such as lip reading, do not help in those contexts. An iatrogenic brain injury exacerbated my APD and reduced my coping mechanisms and now my brain can no longer tolerate or interpret most sounds at all. It’s not a matter of a processing nuance, it is a matter of my ears being able to hear but my brain being quite deaf when there are competing sounds. My APD was a bigger problem for me before it was diagnosed than after. I hope my description here helps you understand that. Now that I have a diagnosis or label I can get treatment and ask for accommodations so that I can integrate more fully back into professional life. I completed my Philosophy degree 16 years ago, but I was unable to attend the law schools to which I had been accepted afterward because I couldn’t hear in the mandatory lecture formats that exist in law school. But I had no idea why I couldn’t hear or what to do about it before my diagnosis/label. Now that I have an understanding of my auditory disorder, I can pursue the education that I had to previously postpone. And no, benefits are not a core issue for me, I am fortunate to have a financially supportive spouse.

  • Thank you so much for bringing Gloria’s experience to the public. I can relate. I experienced inpatient hospitalization a few months ago. While I had been hospitalized many times previously for my persistent mental illness, I was hospitalized this time because I had been prescribed two contraindicated medications, and unbeknownst to me, I was in the middle of an overdose. Immediately upon entering the institution, the psychiatrist assigned to me increased the dosage of the medication I was already overdosed on. I gave a complete medication list upon admittance and no one noted the contraindicated drugs. Over the course of 5 days, the dose was raised from 25mg to 150mg. I subsequently developed severe tardive dyskinesia and have severe difficulties with speech. Some days I cannot speak at all. At other times, I can speak but I am very difficult to understand. I also have difficulty controlling my eye movements and “look crazy” because of the way I cannot hold eye contact. The eye movements cause pain also. Of course no attorney will take action against the psychiatrist who poisoned me. I even went to a neurologist in the same health system and he wrote a summation acknowledging my injury was a direct cause of the toxic level of meds prescribed to me but disclaimed any responsibility by the prescribing physician. It hurts to be injured so badly and then just dismissed. It’s like being told, “Well, if you hadn’t been nuts, you wouldn’t have been hurt”. I’ve had people pretty much say that. I am an intelligent, educated woman who just happens to have PTSD and depression. Now I can barely talk. Thank you for speaking for people like Gloria and I.