A recent article in WIRED magazine took a close look at the vaccine/autism discussion. I discussed it briefly in a previous post. The article took a very science-oriented stance which, you can imagine, did not please the vaccines-cause-autism organizations.
For example, the “vaccines-cause-autism” organizations are listed by WIRED as “anti-vaccine” organizations.
The WIRED piece has caused a stir, even outside of the autism communities. Ms. Wallace’s piece has been noticed by Time Magazine, MinnPost.com, and The Atlantic. Oh, and some of the “anti-vaccine” orgs blogged about it too.
Not surprisingly the author of that piece, Ms. Amy Wallace, received a lot of responses to her article. In an interesting move, she has discussed many of the responses on Twitter. These have been compiled on the “bastard sheep” blog.
In addition to the WIRED article getting noticed, the responses are getting noticed. The Terra Sigillata blog has a piece up. The LA Times LA Observed has a piece on their blog.
Let’s take a closer look at the responses. She got about 250 so far, with about 3:1 in favor of the article. Some of the responses from her twitter feed: Some responses, like the one noted in Terra Sigillata, were quite harsh. Here are a couple:
I’ve been told I’ll think differently “if you live to grow up.” I’ve been warned that “this article will haunt you for a long time.”
“If she lives to grow up”? Pretty clear threat there.
She has every right to complain. Instead Ms. Wallace has reported on these comments, but for the most part she hasn’t added commentary. This hasn’t stopped her detractors from calling her a “cry baby”.
I’ve been called stupid, greedy, a whore, a prostitute, and a “fking lib.” I’ve been called the author of “heinous tripe.”
This is one view the outside world is getting of the autism communities. Does anyone think this is helping? OK, there are the small minority. So, to be more precise, does anyone reasonable disagree with the idea that this hurts the autism communities?
Here are some more comments she received that focus more on the autism communites:
In his book, Autism’s False Prophets, Dr. Offit writes about scientists who have been intimidated into staying silent about autism/vaccines. If scientists – who are armed with facts and trained to interpret them – are afraid, can it be any surprise that a lot of parents are, too?
No, it isn’t a surprise. Sad, yes. Surprise, no.
One persistent theme in their emails is the idea that vaccination policies abridge our civil rights. As one reader put it, “Me and mine are not a herd. Human beings are capable and entitled to decide for themselves what to put in our bodies.” Another mom wrote, “The PARENT knows their child more than anyone in the world. The PARENTS, Ms. Wallace, NOT Mr. Offit.” Another said, “I have a Son that needs Me – not another needle.”
To which Ms. Wallace responded rather well:
This idea – which we discuss in the Wired story – is powerful: that parents, not medical experts, should be the ultimate authority on their children’s health. To which I say, with all due respect, and as a parent myself: loving your child doesn’t make you an expert. It makes you a devoted parent.
Ms. Wallace goes on to state:
The dominant emotion in even the angriest emails to me is despair. Forget the vitriol, the slurs, the insults. The despair is what I find truly painful to read.
Which she follows with this comment from a parent:
“Those of us with autistic children are really sick of you know-it-alls,” one mom wrote me. Then she delivered the best description of what a loving parent wishes for their child that I have received so far. “I want my daughter to feel like a ‘typical’ child,” she wrote. “I want her to experience ONE day of no GI pain or headaches. I want my daughter to be able to gain weight and be able to have enough energy to play on the playground with her friends. So, in between therapies, doctors’ appointments, crying, diarrhea, no friends, trouble with school, countless vitamins to keep her tiny body going and being near bankrupt, you think I want to be in this fight?”
Ms. Wallace responds:
No, I don’t think she wants to be in that fight. Who would? Autism can be truly devastating to families. There is no debate about that. Which is why – as so many parents have said — every available research dollar should be aimed at finding the causes of the disorder
Leaving aside the discussion of whether autism is a medical condition for the moment (although I expect and welcome comments on this):
With all due respect, here Ms. Wallace made a common mistake in equating understanding causation with progress towards therapies. Ms. Wallace seems to have bought into the assumption that if we know the causes, we will automatically know treatments. Well, yes and no. Yes, understanding causation may help in many cases. At the same time, in many cases it likely will not.
Take, for example, the idea that autism is vaccine injury. The alternative medical community already assumes autism is a vaccine injury. They already claim to be treating autism as vaccine injury. Do they have a “cure”? No. Do they even have any proven therapies? No. For that matter, are any of their therapies really based on treating vaccine injury, as they claim? No. As a simple example: can anyone point to a truly innovative therapy that Andrew Wakefield (father of the MMR-causes-autism theory) has developed?
Consider HBOT (Hyperbaric Oxygen Therapy). Can anyone give a clear explanation how that ties into vaccine injury? The closest “therapy” based on vaccine injury proposed so far is chelation. The removal of mercury from a body supposedly mercury poisoned from vaccines. The latest study, from their own researchers mind you, shows it is as effective as a placebo. Which is a nice way of saying: chelation doesn’t work.
I am not saying that causation research is useless. Far from it. However, it is neither necessary nor sufficient to produce the medical therapies many parents are searching for to treat their children.
I’ve gone off track from reporting the responses Ms. Wallace received to her piece. I’ve probably also sidetracked the discussion that will happen here.
Today Ms. Wallace added some comments she has received from autistics.
n the past week or so, I’ve heard from several people who said they were on the autism spectrum. They all said they enjoyed the article. What they don’t enjoy, however, is hearing themselves described as people that no one wants to be.
I’ll end with one comment out of those tweets:
“I have Autism. But: I am a person, not a problem. I am an asset, not a subject. I’m not a lab mouse, I am human.
Left Brain Right Brain 
Why do they always effing have to say we’re devestating to families? Screw that.
Get your vaccines. They won’t eat your babies. And autistic people…shock horror…aren’t a devestation.
$10 to the first mass media person to publish that. I’m sick of having to justify my existence, and sicker of “yes, I know you poor parents suffer from your children” in pro vax stories.
/crabby
I hate to be totally ignorant, I certainly don’t want to be a fool but who in their right mind would want to be diagnosed with autism? What good is it?
” What they don’t enjoy, however, is hearing themselves described as people that no one wants to be.”
“I have Autism. But: I am a person, not a problem.”
My son is not autism, he HAS autism. A person can have cancer and not BE cancer right? There seems to be some confusion, most likely on my part I’m sure.
I guess those parents don’t need a pediatrician.
It’s a lot more broad than that in my view. She thinks understanding causation is the only possible solution to what she calls the “devastation” of families.
That makes no sense. Take Down Syndrome, for example. If a family perceives they are devastated by it, knowing the causes doesn’t change that. All the therapies in the world won’t change that either, BTW.
>> This is one view the outside world is getting of the autism communities.
The potential for this is why I’m thankful that Amy Wallace refered to the list in her article as “anti-vaccine” groups.
“My son is not autism, he HAS autism. A person can have cancer and not BE cancer right? There seems to be some confusion, most likely on my part I’m sure.”
Just the same as he “HAS” any other medical/mental condition out there. I don’t see those with any other mental health issue claiming it’s “wonderful” or how they “ARE” that condition.
Autism impacts sensory, visual, fine/gross motor, speach and language and developmental delays (unless you’re an ASPIE or NLD).
I can guarantee you my NLD child does not wish to be my Autistic disorder child. Actually we (Mother and I) were discussing the younger one and the elder flat out said to us “I do not have autism”, my response “no you don’t”. The more and more my Autistic disorder child learns that he is ignored and isolated and that his brother can do things that he cannot… he doesn’t enjoy having autism either.
When he cries that he can’t go to summer camp, stay at a friend’s house… as we drop the elder off… he should feel proud of this?? This is glorious?? He is expected to live this way because Aspie’s think he should sit and shut up and deal…. Why??
Read more: https://leftbrainrightbrain.co.uk/?p=3419#ixzz0VGzmoeJz
“I hate to be totally ignorant, I certainly don’t want to be a fool but who in their right mind would want to be diagnosed with autism?”
Well… me for one. And I can honestly say that my dad would have been okay being diagnosed as sub-clinical/atypical autistic. Tell you why in a bit.
“What good is it?”
It’s a bloody good key to gain access to services (at least if the services exist!), and it’s also a good indicator of what steps need to be taken to modify environments to better suit the person diagnosed autistic.
“My son is not autism, he HAS autism.”
Wrong. Autism isn’t something one can ‘have’ … it is a developmental psychological state, diagnosed on the basis of behaviour, since it is not a monolithic entity…
“A person can have cancer and not BE cancer right? There seems to be some confusion, most likely on my part I’m sure.”
I’d say. Firstly… my dad died of cancer. Renal at first and then it metastatised throughout his body to his bones and his lungs. And of the two things – autism and cancer – I can pretty much guarantee that hed rather have had an autism diagnosis than the diagnosis of something that cost him his left kidney and then his life. Secondly… cancer is pretty much a monolithic entity: a group of cells whose development has been hijacked by a mutation in the genetic material within the cell that is responsible for how the cell develops. Autism is not like that: we don’t even know for sure what in the brain brings it about, to the point where we cannot really call it a brain disorder (since – even with clear developmental differences in the brain structures – too much in the social and physical environment can influence a person’s behaviour). We can say ‘neuro-developmental’ about it but the fact is that not all people develop at the same rate in everything they do.
As for suggesting that anyone wanting an autism diagnosis would not be in their right mind: that shows a lack of empathy on the part of the person suggesting it… without the diagnosis, many like me have suffered serious crap from others; so please, don’t begrudge us it, or suggest that we’re not in our right minds for wanting a diagnosis that clarifies the issue we have had to face… that’s too much like John Best.
We already went over that. Of course your son is not autism. He’s autistic.
Imagine a guy saying “I’m homosexuality.” Does that make any sense?
I already explained that it’s perfectly OK to use certain labels as adjectives. For example, you can say “disabled people” just as easily as you can say “people with disabilities.”
Of course, we can all see you were just trying to make a point by distorting what is actually said.
Any person with autism may benefit from being diagnosed with it, depending on the circumstances. Some people will absolutely refuse to allow their (sometimes adult) ‘children’ to be diagnosed to the point of threatening formal action.
As regards cancer and autism. A cancer diagnosis does not involve any characteristic or tendancy that can be regarded as part of the person or personal identity. Cancer can really impact on peoples physical appearance and ability to perform their usual roles (and become part of the persons self and socially defined occupational identity as a result) but no person is ever likely to define any part of their being as ‘cancer free’.
In contrast, autism is primarily a behavioural diagnosis. The symptoms do not correlate directly to any model of personality, but some ‘symptoms’, notably preference for sameness and intense special interests and the like, can be experienced by people with autism as being manifestations of their personal likes/dislikes and tendancies.
When these characteristics are displayed in the neurotypical range, they are not medicalised as ‘preference for social contact’ or ‘preference for occasional change because you felt like it or read a good article about it in HomeWeekly’, whereas when they are displayed in the autistic range, we – as a society – medicalise and delegitimise these traits regardless of their personal significance or value.
No one ever ‘has a talkative’, they are talkative or chatty. People don’t ‘have a high sociability’, they are friendly and social. People ‘like to try new things’, never ‘has a preference for novelty’.
That some people regard this as dispossessing and dehumanising people with autism is not something I neccisarily agree or disagree with, but insultingly over-simplistic false analogies to a painful and debilitating potentially life-ending condition aren’t the way I’d handle things.
“Autism impacts sensory, visual, fine/gross motor, speach and language and developmental delays (unless you’re an ASPIE or NLD)”
No idea who told you aspies don’t experience any of this. I doubt it was any reputable organisation.
Altered sensory profiles are definetly indicated in aspergers (and NLD) to the point where some postulate aspergers as a ‘cousin’ syndrome to AD(H)D and dyslexia.
“He is expected to live this way because Aspie’s think he should sit and shut up and deal…. Why??”
Pretty much every ND commentator and blogger I know openly and widely opposes the existence of situations like the one you describe. Several, myself included, have experience delivering professional services to people with autism.
Whenever I have seen people being asked to validate claims like yours above they have always failed to produce any evidence or reference that says anything remotely like they claim.
There are differing opinions. Strongly held opinions. Do you know the reasoning behind the opposing position?
Autism, by its nature, is integral to how a person thinks and perceives the world. It is integral to the identity of the person. If one could somehow remove autism from a person, would that person be the same individual? Or, in “curing” autism, would you have essentially destroyed one individual and replaced him/her with another?
One can cut a cancer out of a person and the individual is the same. You can cut off my arm, and I am the same person. Change the way I think–am I still the same person? Beyond the tough philosophical question, there is no way to “cut out” autism from a person.
FarmWife2 demonstrates quite clearly an individual who doesn’t understand the question posed. It is a very tough question.
Autism, by its nature, is integral to how a person thinks and perceives the world. It is integral to the identity of the person. If one could somehow remove autism from a person, would that person be the same individual?
Bull.They would be the same person,only better.I know.I am not fully recovered,but now that I am in my second year of my recovery,I can see massive improvements in who I am.I have had a setback due to some very severe GI disease in the last couple of months,but I am in a much better place than had I not treated my autism,and spent a lot of time learning the factors that contribute to its severity.I an by no means recovered,but I am well on the way…and I am 49 years old.
A viewpoint even “Big Pharma” has woken up to:
http://www.courant.com/community/groton/hc-ap-ct-fea-pfizer-autismoct25,0,3266887.story
This is one of the things that really drives me up a wall about neurodiversity.It is what I call one of ND’s big lies.If carried to the extreme,we get people who claim cutting with knives on the job,is a valid form of self-expression.and an integral part of who they are.I’m sure most of you know who I mean.It is the same mentality that vilifies parents for treating their child’s autism with “biomedical” treatments ,or says an adult like myself,who is using a dizzying array of supplements, and immune modulating drugs originally meant for AIDS to improve their autism are filled with self hatred and need to see a psychiatrist.
Yes,Kim et al after many false leads,I can now say my autism and GI disease is definitely associated with inborn immune disease.Just like those kids you spit on over at Age of Autism.And I’m too old to have been vaccinated.It isn’t always the mercury.Fever does the job just as well.
Most of those who spout this garbage,have never regressed themselves and,certainly not experienced repeated regressions well into adulthood.They talk about how their “autism”,usually only mild Asperger’s,helps them,and enriches their lives.But thave no idea what it’s like to spend hours wandering,or eloping,with no idea what you are doing,They never talk about head banging. They never talk about going to school in diapers when you are eight and nine yeas old like I did. They never talk about the inabilty walk normally,or write legibly without a computer.
Oh that’s right that’s a “comorbid condition.” 😡
These are what goes away when you use biomed.
Neurodiversity types who see all autism through the eyes of Asperger’s will neyver get it.They are dealing with an entirely different disease.
Yes disease.
And not all autism is the same.
My turn to call “bull”. Find me someone who sees autism all through the eyes of Asperger’s syndrome.
They aren’t on this blog.
@Roger: There’s absolutely no evidence this woo is helping you at all. Even if you’re convinced it has helped you, and you tell us all kinds of tales to show us how it has helped you, that’s still not really evidence.
You’re not that different to Hulda Clark trying to cure herself with the zapper until the very end.
For that matter, you’re not that different to any of the countless woo-meisters who claim they truly are the real deal, unlike the other quacks.
I know this is pointless as Roger is an infamous hit-and-run poster, but it needs to be said:
“They would be the same person….”
By most objective measures – such as those used in autism services – they would be tangibly different in several areas that are generally related to personality and behavioural traits.
The only people not to show the traits under measure are those with PAL scores of 1 or
“Oh that’s right that’s a “comorbid condition”
Correct. If it’s not part of the diagnostic criteria for autism, or directly accounted for by any symptom of autism, then it is clincally a comrbid.
This has been repeatedly pointed out to you, and you have done nothing to rebut it bar aggression and childish sacrcasm.
You continously chide and disdain people who attribute positive non-diagnostic things to thier autism, yet you happily attribute negative non-diagnostic things to your autism that could easily be accounted for by additional or comorbid conditions.
You can’t have it both ways.
“Neurodiversity types who see all autism through the eyes of Asperger’s will neyver get it.”
As has been pointed out before, many of us have dealt with the entire spectrum. The continued implicit assertion that ND is all about aspergers belies an ignorance of who the ND movement actually are
“They are dealing with an entirely different disease”
Not according to any current classification of autism and aspergers.
“And not all autism is the same.”
True. Yet people like Harold et al. continuously berate the ‘ND movement’ for talking about their own experiences at the expense of the experience of ‘the lower functional’.
You can’t have it both ways here either.
“My turn to call “bull”. Find me someone who sees autism all through the eyes of Asperger’s syndrome.”
I would add a stipulation, if only to cut down on the wriggle room Roger has.
Find me someone who sees autism all through the eyes of Asperger’s syndrome, outside of personal blogs or articles.
People do change when they rid themselves of disease. A coworker quit drugs and alcohol, he is the same person but he is different also. My father was a painter and I grew up around other famous artists. Many of them had severe drug and alcohol problems that seemed to work for their art. No one would suggest changing them so as not to interfere with the creative process. Maybe my analogy should have used the word alcoholic rather than cancer. Some embrace being an alcoholic, some family members hate it. Some parents, such as myself, knew who their child WAS prior to him becoming “different” and it is backwards Sullivan, backwards in the sense that I am not trying to change him, I am trying to help him find his way back.
If I could write the script or develop the recipe for remaking me 10 or 1,000 years from now, Im not sure Id want to change anything except my laziness. I’m too afraid of who I would become, I actually like myself. But I do try to improve myself every day. I work out, I (try to) eat right, I come here to learn a thing or two, but I’m also more dishonest than I’d like to be, I’m bad with money, and I tend to find people trustworthy when most aren’t. I work on those things as well. I guess I only do not want to change because of the unknown, but I work everyday to change into someone I would much rather be. Why not do this for my son? He is 3 and a half years old unable to make this on his own unassisted.
I found the Wired article extremely one sided and poorly investigated. But to me it is a perfect reflection of public opinion at least the way it seems to me. My son can only receive an hour and a half of speech therapy a month from government assistance. Our insurance is not required by the State to cover ANYTHING related to autism. And I feel that the misinformation put forth by this Wired article is so infused in the mind of the public that it crushes what hope I have for my son’s development. Politicians who need to enact legislation to mandate insurance reform, to allocate funds for services, for educators and healthcare providers to allow some of us desperate parents a moment or to to explain ourselves and to be respected for who we are, parents who know their sons and daughters and can offer a wealth of information.
It’s tough I know, there are soooooo many different facets to autism, and those loved ones effected by it as I am. .
I’m not sure where you live but I found this today –
“Ruling deals a blow to denials of autism treatment
Refusing to cover a costly behavioral therapy because the care provider lacks a state license violates California law, a Los Angeles County judge finds.” It’s at http://www.latimes.com/business/la-fi-autism27-2009oct27,0,7328448.story?track=rss
I thought of it cause you mentioned your insurance company won’t cover anything for Autism.
Hi Sullivan –
You stirred a big pot with this one!
Here are my thoughts in no particular order:
1) From my observations of my son, and what I’ve seen other autistics write, I think that the sensory perception issue is very important; but it is difficult to say if it should be considered core autism or not. There are, likely many people with autism who do not suffer from sensory perception ‘problems’.
I’m really on the fence here.
I can see an arguement to be made that changing the way someone perceives would be a truly disconcerning concept; I, ahem, experimented with hallucinogens in college. On a couple of occassions when we obtained particularly potent batches, I experienced synthesia for a couple of hours; in a very real (or seemiingly real) way, my perception of reality was heavily skewed. If someone wanted to make me feel that way for forever, I wouldn’t be very happy about it. I guess what I am trying to say is; in cases where altered sensory perception is present, I can see validity to the argument that changing it would be more than solving a medical problem. [I happen to think these experiences have helped me, to some extent, with understanding my son’s behaviors.]
On the other hand, my son’s perception problems aren’t any fun, and in fact, they hinder him greatly. How you do judge the benifit of having a growing child not be tramautized by the sound of a dog barking, or a child crying, against the risk of changing his perception of the world? As you mention, tough questions. I have no idea if our biomedical interventions have helped alleviate his sensory problems or not, but they have reduced, and to my eye, his ability to navigate the world is much improved. He certainly doesn’t seem any worse for the wear, in fact the opposite, by the apparent improvement in his sensory issues (or perhaps, just his ability to deal with those inputs).
2) Attacking Ms. Wallace is detetrimental to advancing any cause. I can, however, relate to people who have little more than anger and bitterness left and have a lot of compassion for them. They aren’t feeling that way for no reason; and I don’t think I have the right to judge how anyone has handled journey autism.
3) In regards to the problem of believing that knowing the cause will lead to effective treatments, I think that a big problem is that ‘causation’, and for that matter, ‘cures’ are too narrowly focused in these discussions. It seems likely to me that there are a combination of lots of little things ‘causing’ autism in most cases, and consequently, lots of things that can help a little.
4) I strongly, strongly believe that autism is a medical condition, much in the same way other neurological disorders are being found to have wide ranging effects. This discussion seems to frequently devolve into semantics and oversimplified analogies and I’m not sure how to move forward.
Derailment of conversation regarding Ms. Wallace’s tweeting complete!
– pD
It’s the difference between accepting the diagnosis Autism and learning about ways to cope with the behaviour of their child, and the blind drive to find a cure to the whole behaviour.
I love how the pro-cure folks ALWAYS ALWAYS disregard the views of non-verbals and “low-functionals” Apparently only people that are “ND” are Aspies. Auties of all kinds don’t count and I LOVE how they always throw the ableistic tangent which is the “Goldilocks Rebuttle”
It’s ridiculous.
Bensmyson wrote:
“My son is not autism, he HAS autism. A person can have cancer and not BE cancer right? There seems to be some confusion, most likely on my part I’m sure.”
I thought there was some question about that. Did you follow up on the suggestion of another diagnosis that was made by David Andrews awhile ago? If your son is indeed autistic, then it’s not something that can be taken away from him. Sorry, no, ain’t gonna happen.
Yes, we’re arguing semantics here. Our side strenuously objects to being thought of as “having a disease”, or “needing a cure”, because those terms are not factually correct, and because they are ingrained in the minds of “curebies”, they push for money to be spent in research that could only lead to selective abortion as a “cure”. We don’t wish for future generations of autistics to be disposed of as Medical Waste, as they now do with Down Syndrome fetuses. The available money could be better spent on education, jobs, and housing, which are all sorely lacking. Autism is not cancer, and apples are not oranges. You’re not the first person to make that invalid comparison, and we’re getting sick of it.
New internet law:
Anyone who uses the fallacious autism-cancer comparison is too thoughtless, disrespectful, and uncreative (daresay I, rigid?) to be taken seriously, and should forfeit their internet connection & take a debate course with that money.
All the circular curebie arguments have been dealt with ad nauseum. So has that, but I had enough gag reflex control to post it.
As far as the dubious value of understanding cause as a basis for treatment, I think of the scene from “Return of the Living Dead” where paramedics try to give medical advice to two walking, talking corpses.
Farm wife two,
“ASPIE”?
You wouldn’t call black people Niggers would you?
Roger, really? I spit on the children at AoA? There are no children at AoA unless we count Jake. And I have spit on anyone. That would metaphorically be them AoAers you’ve apparently decided you’re back to being happy with. What there are is a bunch of angry, hostile and desperate parents engaging in bucketloads of woo. They believe in things like deranged mineral transport and that magically if you give your child ALA every four hours three days at a time, it will chelate mercury from the brain. Come on, seriously; it’s my biggest problem with you: either you have a significant reading impairment and miss the point quite unintentionally or, well, hey I guess you’re one of them with the pre-set ideas and everything being filtered through that rather muddied prism.
Clay, excellent rebuttal.
Kassiane, can I add your new law to my list of laws over at Countering?
Ms. Wallace was interviewed on National Public Radio’s “All Things Considered”. Here is a transcript:
http://www.npr.org/templates/transcript/transcript.php?storyId=114249382
Farm wife two,
“ASPIE”?
You wouldn’t call black people Niggers would you?
Read more: https://leftbrainrightbrain.co.uk/?p=3419#ixzz0VKXiPvCS
Uh. Hi you must be new. Because IDK about your side of the fence but Aspie isn’t a slur. Retard maybe, but not Aspie. Some people don’t use it but it isn’t a slur…
Good night folks.
>> Imagine a guy saying “I’m homosexuality.” Does that make any sense?
This is also why I try to make the point of saying “my son is autistic” rathar than “my son has autism”. The later is way too much like “my son has the gay”. 😦 It implies that it is something that he’s picked up rather than something that he is.
Of course there are people that still cling to the view that “gay” is somethig you pick up, or choose, too. *shrug* I think that view is just as poorly rooted in reality and just as harmful. But I’ve got more hope for this in the sphere of autism as it doesn’t involve the opinion of a huge organised religions and stuff writen in 4000 year old books.
Yes, because being autistic is just like being drunk. @bensmyson: get a clue.
Of course. Even some of the diagnostic criteria are not universal. However, sensory issues are very common in autism, and this is well documented.
There are people who apparently think GI disease should be considered core autism, even though an association is all but ruled out. Don’t tell me you’re not one them, pD.
It’s interesting. Another example is better than normal performance in the Embedded Figures Test, perhaps one of the best replicated cognitive findings in autism science. I bet “curebies” would say this is not really part of autism. It’s just something some autistic people have, and they would have it regardless of autism.
If I choose not to be labeled with the diminutive of a pathological disorder, that is my right. Call me an Aspie and I’ll black your eye.
I have found it incredibly tiring to have a genuine, informative conversation with the lot of you in that every post that spews my way seems to have been scooped out of a pile of poop and intentionally meant to hurt. This is perhaps because of some of your own personal issues with mental illness or a lack of skills to accept questions in a nonthreatening manner. I honestly mean no harm, just talking, trying to learn a thing or two.
“As for suggesting that anyone wanting an autism diagnosis would not be in their right mind: that shows a lack of empathy on the part of the person suggesting it… without the diagnosis, many like me have suffered serious crap from others; so please, don’t begrudge us it, or suggest that we’re not in our right minds for wanting a diagnosis that clarifies the issue we have had to face… that’s too much like John Best.”
As the above comment illustrates, most of you seem to be looking for some sort of justification for being total asses. Most of you it seems embrace the diagnosis as an adult because it “explains” things.
Why steal a diagnosis and call it your own, Im sure there are tons of parents like me that would be glad to give you our son’s diagnosis if you ask, that way he won’t be mistaken for you someday.
bensmyson:I hate to be totally ignorant, I certainly don’t want to be a fool but who in their right mind would want to be diagnosed with autism? What good is it?
Well, I for one would want that diagnosis. So much so that I am actively seeking a psychologist through my insurance plan to do just that. Looking back, from the vantage point of 45, it would explain so much about my behavior, especially that of my childhood years.
As for my diagnosed stepson– to be honest, I wouldn’t have him any other way. At 7, he’s the funniest, coolest kid I know. On his latest IEP Goal report, his teacher commented that he’s “always looking for a good time”. Autism is as much a part of him as his blue eyes and freckles– without it, he’d be a stranger.
Shorter bensmyson: I honestly mean no harm, but you’re all clearly mentally unstable people who just don’t get what I’m saying. I’m really not being an asshat when I confuse “my son is not autism” with “my son is not autistic.” I don’t mean to be insulting when I claim being autistic is like being drunk. Finally, I don’t really mean to question the diagnoses of autistic adults, except maybe I do.
Bensmyson,
If I made a blanket statement ie – “What use is a curebie Mother” – I hope you would scoop out a great pile of poop and drop it on me.
I’m assuming your son is severely disabled – if so, your question, “What use is autism”, is perfectly reasonable…
But if you ask someone with high functioning Autism – “What use is Autism?” – with the implicit view that it is of no use – people are obviously going to snap back at you.
In the words of Simon Baron Cohen, “Autistic traits are also normal traits” – that is, individual aspects, of particularly high functioning, Autism are a normal part of human behaviour…
As has often been said – “People with Autism/ Autistic People” encompasses everything from people with profound disabilities – to Nobel prize winners.
I can’t think of any other area of medicine/psychology/sociology that is as complex and multi-faceted as Autism.
Thanks Joseph, feel free to post for me from now on, you got skills brother. Your mindful perception of the truthful intent is spot on.
Pointing out Wallace’s misstatement that causation research is all that is needed was a good idea from my point of view.
I think poor phrasing set the breeze in motion on part of this comment chain. Asking who would want a diagnosis versus who would want to have a condition are two different things in my mind.
It also appears that someone reads what appears to be an asperger’s superiority site, and then comes here to Whine about what they read elsewhere. I don’t see how the link out that returns to this very same article supports the argument that “… Aspie’s think he should just shut up and deal.” Where does this article/post give you that idea FW2?
“I’m assuming your son is severely disabled – if so, your question, “What use is autism”, is perfectly reasonable…”
My son is askewed. An inch or a mile I’m not sure, he is only 3 and a half. I would prefer he be on plum, level, fitting in, able to talk, feed himself, dress himself, piss in a pot, to have a relationship with a friend, engage in conversation, things his cousin of the exact same age has been involved in for the past 6-8 months.
While I know some people raise their hands and run to the nearest adoption center to love and raise children of various disabilities but some parents would not raise their hand to accept a child with autism, and as some of you fear, some would kill them in utero if they could test for it as they do for Downs. I am grateful that my son is who he is, I have never had a bad enough day with him that I would trade him for all the gold in Africa. But I want him non-askew, I want him to “fit in” and I certainly did not sign up for this when he was 366 days old and the wheels fell off the wagon.
Certainly Autism’s more normal traits can be attractive qualities, who doesn’t want a memory like my son has, who wouldn’t want to be able to concentrate with the obsessive intent that Ive witnessed as I watch my son at play. But come on, it’s not isolated to just those diagnosed with autism. What is isolated with those diagnosed with autism is an inability to “fit in”, to hold a job etc. Everyone with the diagnosis is this way, not everyone has the memory or the intelligence some of you have, they are more like me, or worse.
The majority of those diagnosed with autism have an IQ lower than average.
Raise your hand, who wants that? Who chooses that?
“As the above comment illustrates, most of you seem to be looking for some sort of justification for being total asses.”
The ‘above comment’ was quite reasonable in its tone and content. You did make the implicit accusation that one would have to be mentally unbalanced and/or irrational to actively seek a diagnosis.
You have compounded your error by attempting to claim that any offence taken at your quite openly offensive comment is indicative of ‘issues’ in the reader.
That you felt emotionally hurt by the reply does not and is not an indication of malicious intent of the respondent.
That you decided to respond to people pointing out the problems with your behaviour by – as correctly paraphrased by Joseph – resorting to making cheap personal attacks whilst pretending to be shocked at the reaction, is perhaps an indication that you’re not as nice a person as you have convinced yourself you are.
“Most of you it seems embrace the diagnosis as an adult because it “explains” things.”
Indeed. And thats because it does, as it does for people diagnosed with dyslexia, epilepsy, ADD, dyscalculia etc in adulthood. Adult diagnosis can often work towards explaining anything from minor difficulties with recognising people to major difficulties understanding tone of voice, from problems with maths at school to being unable to work a budget or fill out a form.
Any phenomological study of this is likely to agree with the biographical literature.
“Why steal a diagnosis and call it your own, Im sure there are tons of parents like me that would be glad to give you our son’s diagnosis if you ask, that way he won’t be mistaken for you someday.
Who is stealing anything, and what does the rest of sentence have to do with anything in the thread?
There are many of us here, myself included, who have been officially diagnosed in adulthood on the basis of traits that existed in childhood. Some clinicians will not diagnose adults unless they have testimony from at least one parent or an older relative. Some services will not book a diagnostic appointment until after depression, schizophrenia, personality disorders, and the like have been ruled out in screening interviews.
Personally, I had to attend a screening interview, two pre-screening assessments, a pre-diagnostic assessment, one pre-diagnostic interview, a relative had to be interviewed concerning my childhood behaviour, and then one more pre-diagnostic interview, as well as follow up sessions with a different clinical psychologist (who specialised in ADD/ADHD) and another CPN (who specialised in sensory and attentional ‘impairments’). This took about 18 months from the original refferal.
“What is isolated with those diagnosed with autism is an inability to “fit in”, to hold a job etc”
This is certainly not exclusive to autism (or even to intellectual disabilities/mental retardation/learning disabilities), and I would advise you to approach whoever told you that it was to revisit their knowledge base. Nor is autism a bar to employment or having a social life.
I really do have to wonder who has been feeding you all of this rubbish.
Absolutely not true. Just as you correctly claim that autistic strengths are not exclusive to autistics, the same can be said of all autistic weaknesses.
I’ve come to the conclusion that curebies are unreasonable and dogmatic in their views. This is clear once you “break the code” of their thinking:
Negative characteristics and circumstances are definitely part of autism, regardless of what science says. GI disease? Check. High divorce rate among parents of autistic children? Check. Propensity for crime? Check.
Positive characteristics and circumstances are not part of autism, regardless of what science says. They are just circumstantially there, and non-autistic people have them too anyway, so they are not too important.
Nearly everyone else just goes with what is generally accepted to be true and is skeptical of unproven ideas. For example, who here would deny there’s an association between autism and epilepsy?
My mistake, my ignorance, my wrong choice of words. What I meant to say was that ALL of those diagnosed with autism ALL have a common trait, they can not “fit in” one of the reasons Im not fond of the puzzle piece idea associated with autism, it’s as if it has a place and it doesn’t in my world.
Perhaps it is best I just post the DSM criteria, which to me, is not attractive enough to want it much less wish it upon anyone, especially my son.
Diagnostic Criteria for Autistic Disorder
A. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3)
(1) qualitative impairment in social interaction, as manifested by at least two of the following:
(a) marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
(b) failure to develop peer relationships appropriate to developmental level
(c) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
(d) lack of social or emotional reciprocity
(2) qualitative impairments in communication as manifested by at least one of the following:
(a) delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
(b) in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
(c) stereotyped and repetitive use of language or idiosyncratic language
(d) lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level
(3) restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least two of the following:
(a) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(b) apparently inflexible adherence to specific, nonfunctional routines or rituals
(c) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
(d) persistent preoccupation with parts of objects
B. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play
C. The disturbance is not better accounted for by Rett’s Disorder or Childhood Disintegrative Disorder.
bensmyson,
consider this–and I am trying to be respectful in this comment:
Assume that the idea of a cure involves changing something fundamental about a person’s identity. That in doing so, you change the person into essentially a different person.
It would stand to reason, then, that an autistic “regression” would also mean a change of a person’s identity.
Given that, and your understanding that your child had an event that changed him from non-autistic to autistic, you could argue that this was an unwanted event. You can do this without invoking damage (e.g. baseball bats to the head). You can do this without saying, “why would anyone want to be autistic”, or otherwise implying that autism is somehow worse or lesser than being non-autistic.
Now for someone whose world view is “my choice is autistic or not exisiting”, it is perfectly reasonable for that person to want to take pride in his/her self. I think it is understandable that people would react negatively when you characterize autism that way.
I don’t think anyone should or does “wish” autism on another. As far as I can see, the people saying they don’t want to be cured aren’t trying to make others autistic.
These are thorny questions and I don’t profess to have all the answers. I fully expect to have some negative reactions to this, but if so I hope to learn from them.
Who is saying they would wish autism on anyone?
How we view the people with autism that are here is a seperate issue to whether we think more or less people should have it.
I certainly think there’s nothing shameful with having had a stroke, and that people who have had strokes should not be made to feel like outcasts, but that doesn’t mean I think nothing should be done or that more people should have strokes.
You replies to this thread are just getting more and more bizarre. It’s like you’re having a conversation with someone who isn’t here, but you’re determined to have it anyway.
Again, why would anyone want the diagnosis? As an adult seeking the diagnosis for 18 months what good is it? Do you get free internet or cable as a result? Or do you get a disability check in the mail and free rent if you prove yourself to be suffering autism? I’m certain I could self diagnose myself with quite a number of ailments if that’s the case. It is extremely hard for me to believe that someone with autism can go an entire lifetime never being suspected of being autistic. Then again it’s hard for me to believe that it’s not an environmentally caused brain injury that can be treated. Unless you live in Borneo or someplace south of nowhere, autism is far from being a quirk people over look for an entire childhood. Perhaps you became autistic as an adult. Stranger things have happened I guess.
I would never want my son to be ashamed of autism, I would hope he will never have a need to justify his disorder in any manner. I would hope that he will be accepted as stroke victims, those suffering MS or palsy, are, I am certainly not ashamed of who he is.
@bensmyson: You’d need to hang around a support group to get an idea of why an adult would go get evaluated for ASD. A lot of times it’s because they are having problems at work, so they want to confirm their suspicions. I’m quite sure very little fraud actually occurs, which is what you’re insinuating, isn’t it?
In the UK, it appears that few autistic adults get benefits, and most are employed or employable. See my latest post.
Honestly, if you find something is unintuitive, that’s only relevant in so far as what it tells us about your precarious understanding of ASD. What actually matters is what science says. And scientific research tells us that autism is extremely under-recognized in adults.
“Again, why would anyone want the diagnosis?”
Because they think they have the condition. This is the same for other conditions such as diabeties and arthritis. Some people may be seeking services, others may be simply seeking some form of answer.
“As an adult seeking the diagnosis for 18 months what good is it? Do you get free internet or cable as a result? Or do you get a disability check in the mail and free rent if you prove yourself to be suffering autism?”
For me, it was extra time on exams, a PDA which was useful for both academic and clinical work, a dictaphone which proved useful during interviews and lectures (I have problems retaining attention to aural inputs at the same time as producing written output to the point where I can often have no idea the person was even talking).
Others have received internet (which I could have applied for), access to the assitive education room, TV subscription, funding to help with extra printing.
Other adults I know of have recieved social skills training, help with finding a home and employment, adjustments at work, vocational placements, vocational education, access to adult skills workshops and help in budgeting and housekeeping.
“It is extremely hard for me to believe that someone with autism can go an entire lifetime never being suspected of being autistic.”
Not sure what makes you think that. Not everyone – often not even parents of autistic children – has an accurate perception of the whole autistic spectrum. I’ve worked with fellow health-care students who had very little knowledge of autism outside of the ‘non-verbal, disruptive and mentally challenged’ autism archetype. This has included those with experience in mental health services and special education services.
I only became aware that my own traits could be attributed to aspergers after an article in a national publication. Before then I just had them.
I have also worked with people with patently obvious autism who nevertheless did not receive a autism diagnosis until well into adulthood despite being in a institution or having years of contact with MH services. Many of them were diagnosed as ‘Learning disabled’ (mentally retarded). Some of the ‘higher functioning’ clients originally had SpLD diagnosis, like dyslexia, or more severe mental health diagnosis like personality disorders or schizophrenia.
Thier traits were certainly not missed, nor have I said that mine were. That these all added up to autism was. Misdiagnosis is certainly not a novel or unknown phenomenon.
“Unless you live in Borneo or someplace south of nowhere, autism is far from being a quirk people over look for an entire childhood. Perhaps you became autistic as an adult.”
I never said my quirks were overlooked, I often experienced bullying related to these, these traits were mentioned in many of my school reports, and were commented on by friends and others right from childhood up until my last clinical placement. In fact, the reports from my relatives about my childhood quirks contributed to my diagnosis as an adult. I mentioned this in the original post. Please pay more attention.
bensmyson: It is extremely hard for me to believe that someone with autism can go an entire lifetime never being suspected of being autistic.
It’s not so hard when awareness of all of autism’s permutations has only come to the fore within the last 5 or so years. I’ve worked for nearly 20 years with Exceptional Education students and looking back, some of whom were staffed at the time as ‘Emotionally Handicapped’ were most definitely on the autism spectrum. It was a case of the system jamming square pegs into round holes.
As for my desire for a diagnosis, it has nothing to do with entitlements, and everything to do with curiosity. I wouldn’t pursue any kind of disability support, because I don’t consider myself disabled.
Hi Sullivan –
Not invoking the spectre of damage doesn’t change the facts on the ground though; poorer employment outlooks, poorer prospects for living independently, poorer prospects for having friends, higher likelyhoods of developing comorbid conditions such as epilepsy, a greater likelyhood of needing services throughout the lifetime. These are things that no one wants for their child, or themselves, even given the possibility of scoring higher on specific embedded spatial tests. Nature cares little for political correctness and cares a lot about the ability to adapt to a stressful and changing environment.
I guess the question everyone must ponder is, is speaking to truth more important than not having pepole react negatively to me? Further complicating this is that the parents here are all looking at different manifestations of autism in their everyday; it should be no surprize if the parent of a child who obsesses over trains has different concerns in this matter than the parent whose child has yet to master toileting.
But if you wish your child not to have autism, you get your share of criticism from some quarters.
Similarly, I don’t think anyone who wants to cure their child is advocating force curing the autistic adults out there.
Here’s a question for you (or anyone). We’ve known for some time that maternal infection, and likely maternal immune activation can alter brain development, with lifelong behavioral deficits in the offspring that mimic autism. This isn’t too surprizing given what we understand about paticularly virulent flu seasons and subsequent diagnosis of mental disorders.
It turns out, there are supplemental avenues which seem to be able alleviate the behavioral and neuroimmune consequences of this if given to the mother, such as NAC, and bioflavinoids. [Likely there are others].
Is this the equivalent of ‘changing’ someone’s personality? The eugenics / abortion line gets thrown out a lot in these discussions, but what about simply taking steps that just keep an infant from getting autism in the first place? Does anyone have a problem with this?
Very nicely stated.
– pD
Sullivan you should be a professional mediator. Thank you.
Perhaps I am being misunderstood because of my experience within my own house. I know my son regressed. I also have it confirmed by a behaviorist that serves on the board of the AAP who not only used our home videos to lecture to others on regressive form of autism, actually told me she could not rule out vaccine injury. Imagine that.
I don’t know about anything other than what I experience with my son. I know I did not allow any invasive treatments or procedures. I know simple things helped him such as building his immune system and repetitive instructional play. I know he improved greatly. I know he has a long way to go. I know there is nothing more in the world that I want than for him to be who he was when he was a year old. He has changed, I don’t want to take anything from him, I want him to improve, to better himself, to allow that little boy that had so much going for him to return to us.
People who discover autism as an adult trouble me. It’s like someone saying they now remember being sexually abused as a child, 30 years later. Im not saying it isnt possible, I just have a hard time grabbing it. Many of us look desperately for answers to our own short comings. We try on various things to explain why we are a certain way. The average age of diagnosis for autism is 6 years of age. Adults finding out they have autism and seeking money are taking money away from the children. We had this argument a while back about what is a disability. It just sticks me wrong, admittedly biased because of the lack of funding available for my son and because of how I perceive autism. Either you are or you aren’t, it’s not something that would go undiagnosed much earlier.
I knew a brilliant man once who was extremely paranoid, he was incredibly bright, but he also believed he was from another world and was being persecuted by homosexuals because he was so handsome and because he rejected their proposals they formed a conspiracy to destroy him. But he was brilliant right? Every argument he made to support his theories had such incredible evidence stacked upon layer of layer that in some ways it seemed plausible. I know enough about the mind to know things are not always as they seem.
Things like this are easy to ignore unless it effects someone you love.