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Some children who are accurately diagnosed in early childhood with autism lose the symptoms and the diagnosis as they grow older, a study supported by the National Institutes of Health has confirmed. The research team made the finding by carefully documenting a prior diagnosis of autism in a small group of school-age children and young adults with no current symptoms of the disorder.
The report is the first of a series that will probe more deeply into the nature of the change in these children’s status. Having been diagnosed at one time with an autism spectrum disorder (ASD), these young people now appear to be on par with typically developing peers. The study team is continuing to analyze data on changes in brain function in these children and whether they have subtle residual social deficits. The team is also reviewing records on the types of interventions the children received, and to what extent they may have played a role in the transition.
Read more: http://www.laboratoryequipment.com/news/2013/01/some-children-grow-out-autism
1) A sample size of 34 children is hardly an accurate sample size.
2 ) Verbal IQ has nothing to do with autism, and hardly can be used as an indicator of whether a child has autism. I have a high verbal IQ but that doesn’t make me less autistic.
3) It’s possible to force (some) autistic children to act neurotypical. This is true. This doesn’t make them less autistic, it means they’re faking it because they’ve been told they shouldn’t be autistic.
4) “Our hope is that further research will help us better understand the mechanisms of change so that each child can have the best possible life.” Gross gross gross. The assumption that the best possible life is a neurotypical one is awful. Fuck off, medical professionals who want to “cure” us.
My diagnosability depends a lot on outside factors, but it never makes the way my brain functions less autistic. It just makes me more or less visibly autistic to professionals.
A while back, I made a post about Henry, the 13 year old boy who is petitioning to go to school. You guys were really receptive and he got a lot of signatures on his petition, and, because of that and because of his own persistence and savviness, he’s now gotten some media attention and even some celebrity supporters (Kate Winslet, Collin Farrell.) You can see posts about everything that’s happened on his Facebook page.
His school district is still refusing to let him attend his local school, 200 yards from his house. They continue to bar him from entrance due to his disabilities—Henry is autistic, deaf, and medically complex—and this remains flagrantly illegal, a blatant violation of multiple federal laws (which have precedence over any state law or school district policies.)
This is disgusting.
Seriously, how many 13 year old boys do you know who want to go to school this badly? Or at all?
Henry and his team have a strategy, and they’re moving forward with it despite nastiness from his school district. Part of that strategy involves getting his petition to 10,000 signatures. So I’m going to ask you again: please, please, if you haven’t signed this already, consider adding your name to this. It takes 30 seconds. If you *have* signed it, please, please, reblog this—don’t just “like” it, reblog it so that more people can see, so the signal can be spread, so Henry can go to the school across the street and maybe learn about civil rights from text books instead of from having to fight for his own.
Reblog it. Sign the petition. It’s totally NT privilege that you are allowed to go to school and be in “normal” classes, and this is one case where the kid is fighting back.Help him.
Tagged: #actuallyautistic #autism #stretched ears #autism speaks is a hate group #this makes me sad #damn it #interestingly tumblr is not letting me permanently delete the submission tag #and that makes it look like I submitted these to the original posting blog #which I didn't #um #tumblr #what are you doing #submission
I like people. I have empathy. I care about people.
I care about how I treat people. I put a lot of time and effort into figuring out how to be good to people. And being good to people *isn’t* something you can just do automatically by wanting to. Not for anyone. Even though mainstream culture says that it is.
What I don’t care about is accommodating people’s preference not to see me doing things differently. Or their preference to see me look more like them at the cost of being able to think well and communicate complex ideas that I care deeply about. Or their preference that I not go out in public or interact with people when I can’t look normal.
They want me, and people like me, to just go away. And when we don’t, they say that means we are self-centered and lack empathy.
I think a lot of us who are neuroatypical spend more time trying to work out how to be a good person and understand other people’s feelings and thoughts than at least a significant plurality of neurotypical people.
politeyeti replied to your post: highvoodoopussypope: lorycannotsupinate: You…And also I don’t buy the arguments that the diagnostic criteria are tightening. Moving away from what it means to be autistic, sure; the new set are possibly even more superficial and outside observer based than before. But not stricter.
Yes, this. There’s just no way you could lump everything into a spectrum (getting rid of Aspergers) and say that the criteria somehow became “tighter.” Sure, they took 3 criteria groups and made them 2, but that doesn’t mean they’re “tighter.” They blended 2 of the old criteria (communication deficits and social deficits) into one blurry group (social communication deficits), which in turn eliminated the necessity of language development issues for an Autism diagnosis.
That’s not stricter…
I do understand the fear a lot of the broader autism community has. Some of the early work done testing the new criteria showed a potentially huge loss of diagnosis across categories but targeting the less visibly autistic. But I think those studies were inherently flawed (using data from 1993? Why would anyone take notes to fit criteria that had not yet been developed vs the ones they were validating at the time?). The potential loss of diagnosis is a scary thing, and I completely understand being worried about that. If you only hear that autism diagnosis will go down with the new criteria, of course you might mistakenly think they’re stricter. But autism diagnosis is a really variable thing as it is. Depending on your location, class, race, gender presentation, age (and probably lots of other factors), your access to accurate diagnosis is hugely, wildly variable, and that doesn’t even get into having a school system diagnosis (to qualify for school services like IEPs) and not a medical diagnosis. The quality of people diagnosing autism runs between actual experts and someone reading off a list who maybe took a child development class in undergrad.
There is a huge issue at hand where the new criteria have little to do with being autisitic and focus instead on what autism looks like (particularly in children) to NT, deficit-model-based observers. I don’t like the implications of my potential, my inner life, and my skills as reflected by those criteria. But even as a late-diagnosed, often invisibly autistic person, I still meet the new set (provided I’m seeing someone who knows jack shit about adults on the spectrum, which is not a criteria-dependent issue and is more of a knowledge gap issue). I just don’t like them and think they’re kind of useless.
Very interesting, thank you for adding more!
Yeah, diagnosis is a huge issue that needs to be easier to get (reliably from a trusted source), not harder, because so many helpful school programs and accommodations are so difficult to get without an authority figure signing off on it. But that’s a part of the problem, too. Because we still use a system where one authority figure with all the knowledge and the power is the one who decides whether someone is or is not autistic, the criteria will always be more about what “looks autistic” over what it’s like to be autistic. But other diagnostic criteria in the DSM include private, inner experiences in a way that the ASD criteria don’t.
However, I believe they are trying to lower the age at which autism can be diagnosed (so those school programs and accommodations can be set in place ASAP, though there are NT-centrist issues with interventions and stuff too), which is why we may be seeing more of the “looks” over “be” in the criteria. Because young children cannot tell us their experiences the way adults with other diagnoses can.
The DSM-V is still kind of a sloppy mess, though. There’s really not enough research to justify a lot of the changes, but like you noted, some of the research against the changes is also flawed.
I think it would be objectively better to do two things we are not doing right now (in the US or Australia, where I’ve lived):
1. Include subjective, internal experiences in the diagnostic criteria, even if only as notes and not criteria in and of themselves, or allow them to be part of a designated spectrum of things that can fulfill potential criteria. Have you seen my alternate criteria? They’re floating around tumblr somewhere and I’m super lazy for the link, but they should be under the autism tag on my tumblr.
2. Provide the sort of services that are currently labelled “early intervention” to all kids for free, no questions asked and no labels or potential labels needed. Any kid that needs OT, PT, ST, whatever should be able to access that for free without needing a diagnosis at the age of 2 (unless it’s for something that is medically relevant like CP or hearing loss). Moving the potential diagnosable age for autism younger reinforces the idea that it’s a medical diagnosis that can be made by looking at all the places we lack something “normal” toddlers/children/adults/people have. When you’re talking about a fundamentally different neurological wiring system, searching only for the things that are “bad” is inherently problematic to people’s conceptualization (self- and other). This model leads directly to cure fantasies and the child abuse that follows there, as well as increased rates of depression and anxiety comorbidities for autistic people. The really young diagnostic age also contributes to the cure mythos by labelling kids who are not actually autistic but who do need these services. When they outgrow the need for the services and “lose the label” they are held up as examples of cured autistics instead of incorrectly diagnosed children. I don’t think this is a very large group, but they fuel the belief that autism is a fixable thing instead of a word for a different way of thinking and experiencing the world.
This is not a defense of Autism Speaks. Not at all.
But I do have to say that Autism Speaks is becoming something of a strawman for neurodiversity activists. Pro-neurodiversity writings rather give the impression that all ableism against autistic people can be traced to them. And that’s just not true. Frankly, if it were, the mission of working towards justice for autistic people would be significantly easier if it was.
When we condemn Autism Speaks in hyberbolic terms, we risk not being taken seriously. There are many legitimate criticisms of the organization. There’s no need to resort to hyperbole and caricature in explaining why it is not an organization that people should support. We need to keep the facts on our side.
I will never forgive Andrew Wakefield.
If people understood the trajectory that his bullshit took, you would never believe a goddamned WORD of this vaccine/autism shit. He didn’t even care about autism or vaccines to start with. He cared about Crohn’s disease. Then he decided that bowel inflammation somehow (?) went to the brain and caused autism. But then that turned out to be bullshit, so he looked at vaccines.
Wakefield proposed a lot of different causal mechanisms for the vaccines. I think he and his ilk first started by declaring that the dead viruses in the vaccine traveled up to the brain and did something (?) to cause autism. Then he started with the inflammation/bowel thing again. He published a paper in that vein, but it was found that his samples were entirely contaminated and the methodology was TERRIBLE. So the Lancet withdrew the paper and apologized.
Somehow, though, Wakefield stirring up this pot of bullshit led to the Jenny McCarthy’s of the world deciding that the REAL problem with vaccines is the MERCURY (Thimerosal) in them. Based on someone somewhere saying “Hey, autism’s symptoms are a lot like mercury poisoning.” Spoiler: No they aren’t.
Common symptoms of mercury poisoning include peripheral neuropathy (presenting as paresthesia or itching, burning or pain), skin discoloration (pink cheeks, fingertips and toes), swelling, and desquamation (shedding of skin).
Mercury irreversibly inhibits selenium-dependent enzymes (see below) and may also inactivate S-adenosyl-methionine, which is necessary for catecholamine catabolism by catechol-o-methyl transferase. Due to the body’s inability to degrade catecholamines (e.g. Epinephrine) a person suffering from mercury poisoning may experience profuse sweating, tachycardia (persistently faster-than-normal heart beat), increased salivation, and hypertension (high blood pressure).
Affected children may show red cheeks, nose and lips, loss of hair , teeth, and nails, transient rashes, hypotonia (muscle weakness), and increased sensitivity to light. Other symptoms may include kidney dysfunction (e.g. Fanconi syndrome) or neuropsychiatric symptoms such as emotional lability, memory impairment, and / or insomnia.
None of that sounds anything like autism to me.
This entire hullabaloo is based upon layers and layers and layers of complete BULLSHIT.
Any autistic grad students — or former grad students — out there? I’m thinking of pursuing an MA degree sometime in the future (fall 2013 or 2014), but I’m feeling quite apprehensive about the whole thing. I mean, as I understand it, the courses you take for an MA are mostly seminar courses, where you’re expected to have intense discussions and debates. I have trouble verbalizing my thoughts. I have trouble processing information quickly. I have trouble figuring out how to enter conversations and typically get ignored and spoken over. So I anticipate that participating in seminar discussions will be very difficult for me (I had enough trouble with small group discussions in my undergrad classes, which caused me to have so much social “burnout” that I’m now less able to handle being around people than I used to be).
I’ve been looking at the course outlines of one MA program I’m interested in. From the outlines I’ve read, it appears that involvement in group discussions counts, typically, for a large chunk of the grade (around 20% or so). This really worries me. I don’t know if I’ll be able to make it through an MA, but academia is a world I really love, and I’d really like to give grad school a try. So, anyway — to get to the point of this post: those of you who are on the autism spectrum and who are in (or who have completed) an MA program, how did you deal with stuff like this? Is it possible to find programs (programs in the humanities, I mean) that don’t make your grade depend heavily on class discussions, or is that pretty typical? (I’ve tried looking for advice for autistic grad students, but most advice for autistic people in university is geared towards undergrads)
Part of the reason I still haven’t completed my MA is serious burnout from the socialisation required.
Some of my classes were quite small, and I was pleasantly surprised at being able to participate without enormous struggle. At the time I was undiagnosed and only just starting to consider autism seriously, though I would disclose up front in the future (and I do plan to go back to school for an MD, PhD, or both). In other classes, I pulled the equivalent of a C overall because my written work was good and my participation was nil. Larger classes (anything above about 10) with required discussion tended to move too quickly for me to keep up. My ability to process 6 people arguing different views and contribute my own without being really tangential is not so good. That professor also took a very dim view of one of my longest-running stims: drawing while listening, which greatly improved my focus. I cannot take notes and listen; one verbal activity precludes another. That didn’t go down well. I also found that in classes where the topic interested me I found it a lot easier to participate than in bullshit required classes. Because my MA and BA are the same field, I didn’t give a shit about the two classes basically designed to be introductory to the field which were strictly required.
Depending on what it is you want to study and what your focus is, you may simply want to look at lots and lots of programs on offer and speak to both students and departments about the real weighting given. If you have disability services behind you, I would imagine that some professors may be willing to either alter the weighting or their expectations of what participation looks like for you, but that would depend a lot on the program and culture of the university.
Things that can make it hard for me to socialize that have nothing to do with being ignorant of “social skills,” or finding it hard to understand how other people’s minds work:
- difficulty hearing what people are saying in a noisy environment (i.e., a crowded restaurant, or a university classroom where all 60+ of the students are engaged in “group discussion”)
- delayed information “processing” — i.e., it takes me a while to process what people have said (even if it’s something simple like “Hi”), such that by the time I’ve finally processed what they’ve said and am ready to respond to it, it’s too late to do so, leaving me out of the conversation or making me look rude
- taking longer than most people to form my thoughts into spoken words
- having trouble speaking, i.e. stuttering slightly, putting words in the wrong order in the sentence, long pauses where my mind goes blank and my mouth goes silent, forgetting what words mean, difficulty pronouncing certain consonants, etc.
- finding eye contact uncomfortable — I know how to do it, but it still unnerves me
- feeling bad about how fake my social interactions are, both in the cases where the fakeness is obvious, making me look awkward and weird, and in the cases where it’s not obvious, but I just feel like an asshole for making people believe I enjoy having conversations with them when actually I don’t, causing me to worry that their feelings would be hurt if they knew the truth
- finding it difficult to be around people who wear strong perfume, or other scented products, due to sensory issues
- being overly sensitive to the emotions of people around me, making being in large crowds of people overwhelming (yes, autistic people have empathy! Seriously!)
- having social anxiety and depression due to years and years of ill treatment for being different, both of which make it a lot more difficult to socialize
- just naturally being an introvert and preferring to be quiet and keep to myself, so that a lot of social interactions would still feel uncomfortable and unwelcome to me even if I weren’t autistic and everything I’ve listed above weren’t true
Lots of this list for me, too. I was really surprised I didn’t shutdown at the bar last night—it was so noisy and crowded, and my hearing was surprisingly good for once. I crashed when I got home and I’m having a really hard time doing anything today, though.
“Autism experts” like to claim that our supposed lack of a “Theory of Mind” makes us do things like use words in idiosyncratic ways while expecting other people to magically understand what we’re saying (which of course “proves” that we don’t care about other people’s feelings — or something). But then these same “autism experts” go around using words — like, let’s say, “empathy” — that have one meaning to the general public (in this case, “caring about others”) but a different meaning in Psychological Jargon Speak (in this case, “guessing what other people are thinking/feeling by looking at their facial expressions/body language”). They like to use these words when talking to journalists/appearing on television/writing “popular science” books etc., expecting the general public — made up mostly of people who are NOT psychologists — to magically know what they’re talking about.
But of course they don’t lack a “Theory of Mind.” Oh no. /sarcasm
I enjoy any and all slights to Simon Baron-Cohen.