Lydia X. Z. Brown

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In case you’re wondering

No, Autistic Hoya isn’t relocating to WordPress, at least not anytime in the near future.

What happened today is that I had a fantastic (and by fantastic, I mean downright awful and frustrating) experience trying to leave a comment on a friend’s blog that uses WordPress as the platform. This was by no means the first time this had happened. In fact, it was probably the dozenth or so this year, if not more. With each passing comment, I’ve grown more and more frustrated with my or my computer’s general inability to leave comments on WordPress-hosted blogs. I finally decided that the easiest way to solve this problem would be to create a WordPress account. Then, I ran into the problem that although I wanted to create only a username and not a blog, the system decided to break itself and commit suicide, forcing me to create a blog.

I know of another Autistic blogger who uses an iPad and thus finds it nearly impossible to leave comments on Blogspot-hosted blogs without finding a standard computer with which to write the comment or otherwise going through a roundabout method. I’ve spent months generally unable to leave WordPress comments other than the odd one that’s been allowed to slip through. I hate it when the internet becomes inaccessible. I particularly hate it when the internet creates parallel inaccessibility — when one person can use platform A but not platform B, and another person can use platform B but not platform A, thus creating a mind-boggling, obscenely frustrating paradox impossible to overcome without vast amounts of sheer rage and caffeine. (And stimming, too.)

I know that I’m guilty of not having universal accessibility with my own site, as I haven’t been able to make audio recordings of each of my posts, nor have I learned how to allow folks to change colors, font sizes, and such things, nor can everyone leave comments — and in all likelihood, my former policy on never deleting 99% of comments has created an environment in which at least some people whose comments and insights I’d love to read likely feel emotionally and psychologically unsafe and therefore do not add to the conversation. I try. I really do. But it’s oh so frustrating when the fault lies not with you but with some enormous, impenetrable company that has created a barrier that you have little to no control over removing or altering in order to gain access.

Sometime last week, I was inside a large retail store when I went to the fitting room to try some clothes, only to find my olfactory senses violently assaulted by the overpowering stench of commercial cleaning chemicals that made the entire area completely inaccessible to me. This doesn’t happen to me as often as it does to some friends of mine, but after staggering from the fitting room in a near fit of rage (yes, Andrew, the pun was intended) , I found that the folks working on that particular retail store would likely have neither ability or nor will to change their cleaning practices to accommodate all people with chemical allergies or sensitivity or sensory processing differences, and furthermore, that the only real means of redress lies with the folks at corporate. Not to be a cynic — or perhaps I do mean to be a cynic — but I highly doubt that one letter from an angry customer, no matter how articulate or well-argued, is going to sway them to mandate more accessible environments for all people.

Sometimes I hate having an invisible disability. It means that my disclosure will always be questioned and sometimes interrogated, frequently disbelieved and occasionally attributed to a lazy, defiant personality wont to “make excuses.”

When exploring potential future opportunities for myself based on my current course of study (I’m an Arabic major), I recently realized that pretty much every standard language proficiency exam for people seeking jobs as translators, interpreters, or language analysts requires an oral component (understandably), and that this sometimes takes place over the phone. If that is ever required of me during a job application process, I’m going to have to file for an accommodation under the ADA, because I have auditory processing problems that make it very difficult for me to conduct extended conversations over the phone, including in my supposed native language, English. And that realization gave me pause, because I’m afraid — with good reason — that that request could result in an act of discrimination against me in the hiring process that would ultimately be nearly impossible to prove in any kind of civil suit.

Accessibility is a tricky thing. The thing about it is that it ought to be the basic, minimum standard of human decency — to provide equal access. But the reality of it is that it’s applauded and cheered when someone makes an effort to make a place or a website or a process more accessible to people with all sorts of disabilities and differences. An act of basic human decency has become the exception, better than the norm. And never mind requests for accommodations for accessibility reasons. We’re told to be grateful, to be thankful, to grovel at the feet of such generous benefactors who went out of their way for us. That, or we’re told it would cost too much, would take too much time, would involve just too much effort, and so it’s not worth it. Either way, we’re left by the wayside.

So it becomes easy to resign myself to the lack of accessibility whenever I encounter it, because frankly, it gets too tiring to demand change from ears unwilling to pay much more than perfunctory attention. At that point, why bother?  If the basic, minimum standard of human decency is in reality a far-fetched and unrealistic delusion, then I’m done trying. Why demand equal access? Why demand my basic rights as a human being or even just the acknowledgement of my humanity when my kind is routinely subjected to the worst kinds of dehumanization anyway?

“That’s unreasonable” is just another way of saying, “You, Lydia, you personally are not worth the trouble, because you’re just not as important or valuable as a normal person. In fact, it would be so cost-prohibitive to make sure you have equal access that we’re appalled that you even had the gall to demand it. Who the hell do you think you are?”

It takes one step to move onto this long, tortuous path.

This is very likely to be the very last post that appears here, unless Autistic Hoya ever does actually migrate to this platform, which I don’t foresee and haven’t planned or intended to do. For those of you who’ve actually found and or read this brief screed at WordPress and the internet and general inaccessibility, I hope that at the very least I’ve provided sufficient amusement or engagement for the few minutes of your time that it took to read this. If you (surprisingly) haven’t read Autistic Hoya before (and really, I’d be very surprised if you stumbled across this page without having read Autistic Hoya before), you can find more of the same at http://autistichoya.blogspot.com. If you’re having accessibility problems, by all means, please share them here or elsewhere, or if you too find it impossible to leave a comment, maybe you can just send me an email — lydiab.abdulsaleeb@gmail.com works fine. I listen to accessibility complaints, but that’s probably because I’ve actually experienced inaccessibility. Trust me, I know it’s not fun.

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31 Comments

  1. Hi Lydia, I’m commenting here, because just like you’ve been having trouble commenting on wordpress sites, I have been having a damn hard time commenting on blogger sites… it seems that if I’m logged into my gmail account, it won’t let me override with either name/url OR wordpress OR openID, and as I need to keep my blog separate from my person, I can’t comment easily – I have to open up a whole new webbrowser and other obnoxious things – took me 15 minutes to leave a comment last time I wanted to – I almost gave up completely! I suspect you’re having similar troubles. But yeah, at any rate, sorry for the ramble… but see, it was significantly easier and more accessible for me to comment here, so I did. 🙂

    • autistichoya says:

      I think I’m going to leave this page linked in the comment script on the main blog so that people with WordPress can just post comments to any of my posts on this page, so long as they specify whatever it is specifically they’re dissecting/admiring/attacking. Maybe that will solve my/your/other people’s problems?

  2. I hear you about WordPress. Accessibility is a big problem (though not for me). But Blogspot is just as bad, if not worse. If it were not for the fact that trying to log in to post anything to Blogspot proved impossible for me (and I later learned that it was a Google-owned thing, thus would always “correct” my server addresses for me)… well, I am sure you can guess the rest.

    • autistichoya says:

      Before I began to use Blogspot, I had the same troubles, particularly as I didn’t use my real name online, and would have to switch browsers or log out of my email in order to comment on things. It was a right bloody mess.

      • Can you explain me this? Because when I’m logged in in Blogger and then leave a comment it doesn’t show my real name, or does it? I don’t want it to show my real name and until today I thought it wouldn’t, but maybe I’m false. I’m taking about leaving comments on Blogspot-Blogs, mainly.

  3. charbfc says:

    I started blogging some time ago on Blogspot, with the high hopes that I could start a conversation with folks who might be interested in similar topics. HA! It’s way, way too difficult for them to log in and leave a comment – everyone gets scared away by all the hoops they have to jump through. Very disappointing!

  4. Meg Evans says:

    My sympathies. I stopped using Blogger two years ago because it misposted one of my comments, which resulted in several trolls spreading conspiracy theories about me. Blogger used to have all kinds of glitches with its comments. It seems to be working better now that Google has integrated Blogger commenting with Gmail accounts, but that has caused other problems as you’ve described.

    • But when you have a blog (on Blogger) you can choose who you want to leave comments. Only people with an account or everybody. I have chosen everybody (I think) so I hope that actually everybody can leave a comment. Or is this still not the case even in this case?

  5. Oh Lydia, really pleased to have this as a place I can occasionally comment as I have tried a number of times to leave comments on your regular blog. Always enjoy reading you and am pretty much in awe of your ability to write the last post about Language and representation from your iPhone without any typos that I could see. I am genuflecting before your imagined presence.
    Language is important. It carries with it a responsibility, especially for those of us who are writing things that will be read by others. I have written on my blog things that months and even years later I would not write today. I appreciated your honesty about how ideas evolve and change with time. Something people often do not speak of. My ideas, my language, my opinions regarding autism and specifically my Autistic daughter have changed considerably in the years since she was first diagnosed. I am grateful for that. There are some words I’ve chosen to use, such as refer to her as Autistic, rather than saying she “has autism” because of the things I’ve read from adult Autistics and until she can tell me otherwise, I hope she will forgive me if this is something she doesn’t agree with. Until she can advocate for herself, a day I fervently hope, will one day come, I do my best to respect her, while speaking of my own process through all of this. I try not to say things that, were she to read, she would find hurtful or upsetting. If I am in pain, I try hard to convey that this is MY pain to work through and not hers or because of her. I have learned so much through your writing and other Autistics who are writing. I am pleased to hear you, to read your thoughts, always interesting, always thoughtful, always insightful, often provocative. Thank you for writing, for making your opinions and ideas known, my life is better as a result.

  6. This is wonderful, and I hope that as my Autistic 3yr old gets older and comes into her own, she can have as much pride and confidence in herself, as you do. She is my HERO and I am so very proud of her and all her hardwork. Thank you for the post, I look forward to exploring your site and sharing your insights with others.

  7. C7 says:

    Tried to post the following at your Georgetown Independent piece, got 404’d (with an ironic “you’re out of place” custom-404 screen to boot). So here it is:
    In changing one’s speech patterns, one almost certainly changes one’s thought patterns as well. Checking one’s language is worthwhile.

    Getting actual perspectives on impairment/disability is useful; the difficulty IMO is finding the balance between representative inclusion & the “self-narrating zoo exhibit” where one’s participation is presumed to be for the benefit of those present who do not have that perspective. [In the autism realm, this tends to happen when autistics speak at parent-focused conferences.] Here, I worried that asking Mr. Lehrer his opinions right there in class might qualify. Proposed solution: professor privately checks with him beforehand(figure a week or two?) to ensure that there’s nothing significantly out/line in the materials. This would defeat both the potential of Mr. Lehrer being regarded as a Token Blind Guy and a professor’s need(?) to remain publicly unchallenged.

    Thank you for your time and consideration.

  8. tielserrath says:

    Commenting on your simulation post as the wordpress demon has struck again:

    Oh dear god… and they didn’t even talk to someone with autism before they made it.

    That site wasn’t helped by another article on the sidebar: INSPIRATION OVERLOAD! The wrestler without arms or legs!

    Needless to say, I didn’t click through.

  9. Mrs. Why says:

    http://www.autistichoya.com/2013/02/my-heart-breaks-for-your-child.html?m=1

    “My heart breaks for your child.”

    I have often wondered what my stepson, who has Aspergers Syndrome, 8 yrs old, and my cousin, who had severe Autism, 26 yrs old, who my family has had custody of since he was 15… I have wondered what they feel like living in this world with us, the “normal” ones, who are responsible for their every bit of care.

    I came across your blog while researching, as I have done every day for 17 years… As a caretaker of 2 “handicapped” persons, I might be able to she’d some light as to why people feel they wish they had “normal” children.

    First, as I stated nearly every day for 17 years I have researched ASD, and I firmly believe the travesty which has happened to an entire generation, is avoidable, and a deliberate damage has been done to our children.

    As the one with ASD, things are probably very different than for the one who is caring for the person. I can only speak from my personal experience.

    I think when I person states, “I wish I had a normal child,” they are wishing the damage which happened to their child….never happened. That, there weren’t numerous doctors who could not explain what happened to their baby’s mind and body. That their child wasn’t violent, or sitting in a corner banging their head against the wall, or running through the store screeching as loud as they could, that their bowels worked properly, that they didn’t wander away in the middle of the night, they didn’t attack police officers, they didn’t run into oncoming traffic, they didn’t beat up their pregnant cousins, jump out of second story windows…. Threaten to slit someone throat and “f$&@” them when they were dead, they didn’t have to live on drugs which only make them more ill, they didn’t wake up at 4 am everymorning jumping and screaming for years so now one gets to ever sleep…. Or talking nonstop ALL day EVERY day…. Never really saying anything, or smiling in someone’s face when they are being corrected for smacking the dog in her stomach after a c-section and asking if the dog had fun while almost dying because of a miscarriage, or stomping on his new baby brothers fingers and breaking 3 of them…. I could keep going, but I think we get the point.

    I don’t think it’s so much wishing for normalcy, as wishing our children did not have to live this way. You may be happy with the way you are, and that is wonderful, but, it doesn’t seem you are as severe as some of the above mentioned. Having ASD yourself, as a parent, you might possibly understand more than we do… But, are these things something you would wish for your child to live with? Do you think maybe one day, you would pray for a cure?

    Caring for a child, and then an adults EVERY need, especially when handicapped, is not a piece of cake for anyone. It is VERY different to be the one cared for, whom everyone else builds their lives around, than it is to be the one building life around the person who needs the care.

    Does this mean we dont love our children/family members? Hell NO! It means, even though we wish they didn’t suffer these things, and we had life a lil easier….. WE STILL DO IT! We miscarry our babies because of a brutal attack by a teenager with Autism, we go to the doctors visits 4 days a week, we lose our jobs because our children are kicked out of school over and over, we wake up EVERY day to a screeching, banging, yelling child, and make that child’s breakfast, before we even get or coffee….. We cry, we break, but WE DO IT….. If that isn’t love…. Well, I don’t know what to say.

    • Terry Falk says:

      Honestly, while some of the things you describe seem part of autism, the main thing – the violence (as well as the drug use) – does not. This isn’t to say that Autistic people are never violent and never use drugs or anything. It is to say that such things are not inherent parts of being Autistic, no more than they would be of being allistic/non-Autistic (and allistic people are violent towards us A LOT). To say that you wish that your violent Autistic relative wasn’t Autistic anymore because of the violence makes as little sense as wishing that your violent gay relative wasn’t gay anymore so that he would stop being violent.

      I’m all for eliminating violence of all kinds against all people. What I’m not in favor of is seeking cures based on a conflation of normalcy with morality that doesn’t have much basis in reality at all.

    • adkyriolexy says:

      Autistic people statistically are no more violent than non-autistic people. While some individual autistic people are violent, this is NOT BECAUSE OF THEIR AUTISM. There are violent individuals who happen to he left-handed, but no one would suggest that their left-handedness caused their violence, or “we need a cure for left-handedness, because I met a violent lefty person once.” It’s utterly nonsensical.

      While autistic people are no more likely to initiate violence than non-autistic people, all people (autistic or otherwise) can be prone to violent acts in self-defense. Autistic people are regularly abused in the name of “care” or “treatment” or “therapy” or “help,” and when the autistic people physically defend themselves (as anyone else would in such a situation), they are called “violent” or “aggressive.” Most autistic people (like most non-autistic people) don’t initiate fights, but they can certainly fight BACK when provoked.

  10. NonViolentAutisticSurvivor says:

    I can understand your aversion to violence, Why, as I have an aversion to violence myself–and am on the autism spectrum. Not all Autistics go around attacking pregnant women and police officers. A cure to autism will not end violence. If you want an end to violence, get to the core of the issue. And know that there are MANY more autistics on your side, who want a more peaceful, compassionate world, than there are violent autistics. I am autistic and have been the victim of extreme violence (at the hands of non-autistic perpetrators, mind you) and really wish that you wouldn’t equate the violent acts you outlined with autism.

    • Mrs. Why says:

      I am not equating violence with Autism. It is a symptom I have witnessed, over and over and over. Not just with my cousin, but with my stepson, with SEVERAL other children at their schools, toward them, teachers etc. one of my very best friends awoke one night, to her 7 year old son, who has Autism, in the kitchen of yet home, holding a knife…. When she asked him what he was doing, he simply replied, that he had to go murder his brother.

      I did NOT just mention violence… I also spoke of being kicked out of schools, and losing our jobs because of it, of running into traffic, of wandering off, running through stores screeching and screaming, slamming their heads into the wall, over and over, waking the entire household up every single morning….. For years, so that all of us are so sleep deprived…. We have circles under our eyes.

      Not being able to do ANYTHING the child/adult might not want to because a fit is sure to follow. Having an entire family build their entire lives around the very whim of the person who is in need.

      Again, I do not know if any of you are this severe, or have ever had to care for someone with severe Autism yourselves…. But, all I am saying is that it IS devastating. It breaks the parents…. Especially when they are one who KNOWS their child was healthy, and now they are not! Again, it doesn’t mean we don’t love, it means….. We don’t want our children/family members living this way.

      Autism, in my opinion, because the government and drug companies and medical industries and food industries do not want to admit what has cause 1-54 boys and 1-88 children to develop Autism, has gone out of their way to paint it as this “sweet, cute, fun little new thing” happening… No explanation, no reason…. NO CURE…. Just, “Awe…. It’s Autism awareness month.”

      The BIGGEST travesty of all, are those children….who are now growing into adults live with being ignored….. their issues unaddressed……

      • Terry Falk says:

        You said “I’m not equating violence with Autism” and then went on to do exactly that, in fact calling it a symptom. There is no diagnostic criteria anywhere of violence being a “symptom” of autism. Statistical research shows, in fact, that we’re less likely to be violent than neurotypical people. If you’re not going to equate violence with autism, then good – stop doing it, starting now.

        As for the other stuff, we don’t do stuff like that without reason. That’s not to say it’s good or acceptable in some cases, but that it’s the symptom of a larger problem. Self-injury or intense reactions like screaming, for instance, is often a sign of major anxiety due to sensory or other environmental stressors that we don’t know how to either escape from or more easily communicate that we’re being harmed by. Get rid of the stressors, and you might well get rid of the problem, no “cures” needed. Believe it or not, even Autistic self-advocacy types would like to be rid of a lot of these things, not only because it would necessarily mean that the things that hurt us as Autistics are also gone, but also because we don’t actually enjoy feeling like everyone else around us hates our guts. Trying to mitigate unpleasant aspects of autism/being Autistic and find a way to best be ourselves and what we want to be is not a cure – doing so is to a cure what preventing ovarian cancer or unwanted pregnancy is to “curing” being a woman.

        And our issues are hardly being ignored. Woefully mishandled which results in serious physical and psychological harm and even death, yes, but certainly not ignored. The way “awareness” is being handled now is only going to get more of us hurt.

      • Mrs. Why says:

        Terry, I didn’t see a “respond” button under ur post, so I don’t know if u will get this or not.

        When I said, “I am not equating,” that’s exactly what I meant… I am not, putting violence into Autism, I have seen it as a symptom of Autism, and also been told by several doctors, social workers, psychologist, and administrators, it is a common symptom.

        I am ALSO, not attacking the behaviors, and understand they are also symptoms.

        It is wonderful, you, and the other persons here are able to have debates and intelligent conversations.

        As for those in my life, and those in the lives of persons close to me, this is not the case for many of this generation of children with Autism.

        You have spent your time, in a way, trying to negate what my personal experiences have been with Autism.

        I do wish there were a cure. I do wish an entire generation of children and young adults were not damaged by the medical and food industries, and now living with the consequences of someone else’s doings.

        I also, would like to hear, from anyone who has Autism, since this blog touched me so closely, if they were raising a child, who had symptoms, such as I’ve listed, and many many many other parents experience…. Would they truly view it as not loving the “handicapped” child, if they wished the child did not have to live this way?

        Another symptom, I have personally experienced, and been told by many professionals, is a symptom, is the inability (not saying all persons who have Autism are this way) to see past their own wants and desires.

        For example, if my step son were to want to go outside, and no one else wanted to go outside, he would be unable to process the fact that all of us are not there to just serve his whims, and would literally never ever stop either throwing a fit, talking about it, having a melt down, until he is given his way. This is just a basic example.

        If my cousin, at 26, which is the same age I was when I started caring for my step son, were to be expected to take care of someone with Autism, he would be unable to see past his own desires, give up his needs and live solely for te child’s needs. The child would go uncared for, because what he wanted would be more important.

        I posted here, because, I wanted to say, it is not about NOT loving, people would be incapable of caring for others if they did not love them. I also wanted to share the other side, to say hey, this isn’t easy….. This is what it looks like, would a person who has Autism, be willing to do this for another?

        My objective was not to place ideals and symptoms on Autism, that don’t exist… They DO exist… Just do a little google search for parents talking about what they have experienced.

  11. Kerima Cevik says:

    Mrs. Why,
    You are relating your experiences as a care provider. But you are not understanding what is being said about your experiences. You are assuming those individuals typing answers are “less severe” than those you provide care for. That is not necessarily true. They are different, not better or worse.

    My son is non speaking, and I guess in many ways would fit into your idea of what you think someone Autistic is. Here is the problem. When you describe your stepson or your cousin, we are missing a great deal of information. Care providers and medical professionals tend to throw everything under the label of “oh it is his Autism”. Back in the day, it was thought that dementia and Alzheimer’s were part or aging. Then a researcher had the sense to really look at why some people did not suffer from dementia or Alzheimer’s while others did. Once the field of geriatrics was firmly established, everyone understood that these were illness that had nothing to do with aging and needed urgent attention, indeed a cure needed to be found for them. The self injurious behaviors, aggression, and incidents that you are using as examples are symptomatic of side effects to medication, clinical depression, abuse, and any number of other things, including undiagnosed severe pain. One mother took her nonspeaking adult son to a gastroenterologist who was diligent in finding and diagnosing rare gastric disorders. When he found the problem, her son, then 27 and having bee nonspeaking and violent all his life, began to speak single word utterances. A seven year old who was considered extremely violent, was taken from one specialist to another until it was discovered that the child in fact had an undiagnosed seizure disorder. Once on medication to stabilize him, he calmed and was able to attend and became a happy autistic child. Long term psychiatric care relying heavily on pharmaceuticals can cause more harm in the long run and can give rise to all of the episodic behaviors your are describing. But none of these things are cause by Autism. And when a medical professional tells you it is, what they are really saying is that because your loved one is disabled they don’t want to find the actual medical problem and treat it, they want to give you a label to hang on every problem they don’t feel like treating.

    The more Autistic nonspeakers are given a method to communicate, the less maladaptive behavior will be seen in that individual.Policemen are not trained to deal with Autistic people. If they escalate, as they are trained to do, the Autistic person will reflect that behavior. And so I’m not surprised when you say a police officer had a catastrophic encounter with someone in your care. Being kicked out of school doesn’t solve the problems and prabably made things worse. What is interesting here is that, if a member of your family who was not Autistic got into a fight at school, your first reaction would be to look for an environmental cause. You would question the person, asking if perhaps they are being bullied. But having establed that history of violence, anything that happened to the autistic individual had to be caused by that person. Studies have shown that unless a person is diagnosed with something like Tourette syndrome or a similar dx, this individual’s aggression is then externally caused. There is no diagnosis of Autism in which violent behavior is part of the diagnosis. You are experinecing the reactive cry for help of your relatives.

    I am tired too. And as you can see by the hour, I stay up late to insure my son doesn’t wake up from nightmares. You see, my son was harmed. beaten at school and he couldn’t let us know because he could not communicate. He simply grew more hostile until one day we all saw that he had gotten on the bus fine and returned home from school with a scrape across his cheek that could not be hidden by the teacher.

    Because we have turned our son around from SIB and done it without drugs and when he wants to sleep we give him melatonin, I’m going ot have to repeat, that the behaviors you describe are not part of the neurology of Autism per se. They are something that should be addressed for what it is. And the inviduals should be reassessed and given treatment as would be their right if they had typical brains.

    And when you look for tragedy, you find it. Our son’s life will not be easy. But we take each day at a time, and we see how far he’s come. We’re proud of him. I am very sorry your family is having such a difficult time. But assuming that the writer is speaking from the standpoint of an egocentric point of view is just bad form. I know. She stood up for hundreds of disabled people as well as other Autistic school children who were bullied and even thrown out of school .

    You must all get sleep in shifts. More sleep makes less depression. You are depressed as well.

    • Mrs. Why says:

      I do appreciate your thoughts. I will let u know the rest of the story…. Since it seems I need to clarify myself. I’m not saying the blog was written from an egocentric point of view…. What I asked was, would a person who has Autism be able to do what u and I do everyday? And…. If they were devistated by what happened to the child, and wished the child could be healed…. Would they be told they didn’t “love?”

      The rest of the story is, I believe Autism can be healed. We are seeing it ALL over the world, one parent at a time is helping their child to recover. Now, my cousin came to us when he was in his late teens… When we tried to simply change his diet, and discuss the FACT the drugs he was on were dangerous, and causing some of the behaviors, we ended up in court. The state fought us tooth and nail…. To NOT try to heal him, and to keep pumping him full of deadly drugs (which we never said we were going to take him off of, we simply were looking for alternative help), u see, in Michigan, the state as well as the doctors pharma companies and especially the school districts work together to keep these children sick. It’s their bread and butter. If u question this, u stand to loose your child. My friend, the one who’s son was standing with the knife to go murder his little brother…. His mom called the doc over a new med they ha places him on, she called 8 times, no response. She is a social worker, decided to take her son off the med, he had only been on it for a week…… When she went to the doctor she told him what had happened…. They called CPS on her…. My cousin was taken out o our custody because we didn’t want him eating sugar and gluten in his lunch, and because we were afraid of what the medication was doing to him after having live on it for over 15 years…..

      My step son…. His mother LIKES him sick, for all the attention she gets. He had been in a merry-go/round of drugs…. One of which literally made him act retarded. When it was reported to the doctor, we asked, the doctor to report the symptom to the FDA, he laughed in our faces. We successfully removed my step son from risperidone. The schools went into full blown attack mode, and did NOT stop until they got their way of having him on the meds. His mom refuses to believe diet has anything to do with it, and continues to pump him full of sugar, even after we have an allergy test which shows he is allergic to gluten and eggs and sugar….

      I have fought for BOTH of my family members. When my step son was off the drugs… He was still violent. My cousin is sooooo violent, the home he was livig in kicked him out for fear he was going to murder one of te staff members.

      They WANT these kids sick. And it is left up to US to live with what has been done to our children. My only point is, only an insane person would WISH to live with this, and never have a hard time. Again, it’s hard, and we couldn’t do it without love. My only point.

      Everyone can say violence isn’t a symptom of Autism. I have seen violence over and over….. Yes, people without Autism can b violent. I am not denying this. But to pretend it is not a very real issue within Autism is just being blind, regardless of the cause…. Which, even if u try to find it….. U will be stopped (often times) by those who make their money from it.

  12. Tammy Mercure says:

    I was wanting to speak with someone about JRC. I have read the stories
    And I have sign the petition and gotten many more to sign it.
    If there is anyway anyone could contact me I would really like to help
    Make sure the world knows about what’s going on there.
    As a mother of 2 special needs children I want to make sure the safety of all special needs
    Children is going on. I’m just a regular mom just wanting to help and make a difference.
    Thank you

  13. CJ Shiloh says:

    Hi Lydia!
    This comment is in response to you post on July 1st, 2013:

    Bummer that you’ll be in Baltimore on July 11th, but Sunny and I will be in Pittsburgh, presenting at the ASA conference. In fact, this whole summer is bumming me out – I’d much rather be in Syracuse and Autreat than presenting at ASA. Next year, we’re determined not miss the more important things, which is staying together with our friends in Neurodiversity community.
    Advocating for Neurodiversity in the music therapy field, and the autism world at large is important, but both Sunny and I are feeling a little burnt out with it already, and the year is not even finished.
    And we can’t afford tickets to Denver for AutCom2013, so we wait for next year.
    Hope you are well and hopefully reconnect in person soon! I’m always sending links to your website to other music therapists that I know. Keep up the awesome work!
    CJ

  14. wadehuntley says:

    This comment is in response to your “15 things not to say to an autistic post”

    Thank you so much for taking the time to share your thoughts on this. My son is seven years old and is autistic. I have always tried to accept and embrace the things that make my son special. Unfortunately I have encountered some of the people that lack the ability to perceive the benefit that diversity brings to our community. Your thoughts are insightful and I will try to incorporate some of these things into my own parenting.
    thank you,
    Wade Huntley
    http://www.avoiceformyson.com

  15. Clarissa Kripke says:

    Can you reference the article critiquing Temple Grandin? I haven’t read everything she has written, but I don’t recognize the attitudes and beliefs you discuss from what I have read.

  16. This is in response to How “Differently Abled” Marginalizes Disabled People: I want to say, thank you for the clarity this piece brings to this issue of naming the other, however seemingly well-intentioned (or not). I appreciate too the opening into dialog that this format affords, and enjoyed reading the comments that followed your article.

  17. suburp says:

    hi Lydia. just letting you know that i commented on your post about devocalisation.. uhm, twice. if my second comment is successful, maybe you want to recommend to other wordpress users to use the name/url option instead.

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