How to discuss this most thorny of subjects without either offending someone or getting it wrong? The answers are that you can’t. I’m going to get this wrong for some and offend others.
Recently, Sullivan posted an update from ASF’s Alison Singer who intimated that ASF were on the search for a cure. I want to say that a) I don’t believe Alison Singer was very well quoted and b) Even if she weren’t, it was still a worrying quote for some.
I don’t think Alison, whom I _have_ forgiven (as if she needed it) for her statements regarding Autism Every Day is – like lots of us, including me – very good at saying the exact right thing at the right time. I doubt she has a team of PR spinners ready to oversee every word and I think that maybe those that _are_ in charge of that PR aren’t on the same wavelength as Alsion Singer.
So much for ASF. What about the dreaded ‘c’ word. I’m on record as saying that autistic people don’t need a cure. I still think that. I still believe that autistic people should be afforded every opportunity and every assistance to be who they are regardless of who others think they should be. I know people – those who believe that life is black and white – take issue with that but I think its perfectly valid to respect those who do not want a hypothetical cure to not partake of that hypothetical cure.
But.
There are those autistic people who _do_ want a hypothetical cure. For those, we are duty bound to look for one. Even if we strongly disagree with their reasons, if we claim to respect the right of people to have differeing neurologies, we cannot _ignore_ the ideas produced by those people. We can disagree with them, debate them, whatever. But we cannot and never should ignore their right to have those ideas. To do so stands against everything that neurodiversity stands for in my opinion. Some things are inconvenient truths. This, to me, is one. My own answer to this inconvenient truth is that I don’t like it. I disagree with it. I will still respect the opinions of those who want it. They posses a validation I cannot – they are just as autistic as my own daughter and I cannot and will not force my own ideas on these people.
So, to me, we – those who do not believe in the necssity of a cure – should be reframing the debate. Instead of saying ‘no cure, not now, not ever’ we should (in my opinion) by saying ‘if there ever is a cure, heres how to use it wisely, without pressure or contrivance’.
I think there will be a cure one day. I think its unavoidable. Science is amoral and will search where it will. It has given us electricity and we built the computer and the electric chair. Morality had no say in the discovery of electricity but it shaped the development of the death penalty and how we moraly share information. I think that how we approach the time that this cure is invented/discovered/developed is vital. We can choose to fight against it and lose or we can choose to help shape it to be a morally responsible idea.
Left Brain Right Brain 
I agree with you wholeheartedly, Kev. As an autistic person who does not want a cure, I feel ethically bound to support those who do. If I want self-determination for myself, I need to support everyone’s right to it. My experience is not necessarily another person’s experience; what I am willing to live with is not necessarily what someone else is willing to live with.
To my mind, the main issue that drives the acceptance v. cure debate into polarizing extremes is the single, overriding social obligation for disabled people to “get well,” whether we consider ourselves ill or not. This is an obligation that must be looked at in all of its ramifications before we can have any sort of nuanced debate on the subject. And that means looking at these issues from a broader disability rights perspective, and not simply from an autism perspective.
I recently posted about this issue at http://www.journeyswithautism.com/2011/05/11/autism-disability-and-the-obligation-to-get-well/. I’m hoping that others will also be interested in reframing the debate. The current terms of engagement are getting us nowhere.
How about the role of parents in wanting their severely dysfunctional, intellectual disabled autistic children to live a fuller life. Who decides for those children other than their parents? Kev L. ? Does Kev L, decide for someone else’s child whether they should have a cure or not? Does Rachel 14:43:16 decidce whether someone else’s severely limited child should have a cure or not? Of course by asking such questions I am pre-branded as seeing things in black and white aren’t I? Kev L. should start showing real respect for others and quit faking it.
Actually Harold, they’re good questions and I don’t pretend to have the answers to them. But maybe part of the answer is to start with a presumption of competence rather than incompetence? Does this mean you’re seeing something in black and white? I don;t know but I do think you’re not prepared to see any options other than your own.
“How about the role of parents in wanting their severely dysfunctional, intellectual disabled autistic children to live a fuller life.”
Can you clarify something for me? In your view, does intellectual disability (in and of itself), and/or autism (in and of itself) mean that an individual will have a less full life than one who has neither autism nor intellectual disability?
As Sullivan can attest, the wielding and implications of the term “cure,” was a matter much-discussed at IMFAR — discussed with folks on the spectrum, parents, and professionals. I’ll post an excerpt from my IMFAR roundup rather than retype:
“IMFAR was also a week of thoughtful conversations with folks I deeply respect for their inclusiveness, ethics, and neurodiversity outlook. We generally agreed that most community members — autistics, Aspergians, or parents of kids with autism — want to ameliorate the challenges that accompany an autism diagnosis, wherever reasonable. For parents, friends, and relatives of kids with autism who are **not neurodiversity-aware**, that last phrase can be a synonym for “cure.” [While] I think such attitudes are understandable, [they] demonstrate a need for redoubled efforts to promote autism awareness and acceptance.
“I do hope Autism Speaks’ ongoing evolution continues to guide them towards the research and support of autism symptoms, needs, and challenges — and away from the word “cure.” Especially when that word that doesn’t apply to people like Autism Speaks Scientific Advisory Board member John Elder Robison, who stated repeatedly that while he may be on the autism spectrum, he is not disabled.”
from http://thinkingautismguide.blogspot.com/2011/05/imfar-2011-proof-of-evolution.html
a) Well, good on you for forgiving someone who isn’t remotely sorry for wanting to kill her kid, and who was VERY involved (in charge of? I don’t remember that bit, what with the driving off a bridge bit) a panic video that still effects lives of real autistic people today. I guess…
b) If people want a cure for themselves, I am sad that their life has been so crappy that they feel they are broken. Really, that’s my first reaction. People suck and it sucks that they have so many disabled people convinced it’s our fault that they fail humanity forever.
c) There is no way a cure would be used ethically. None at all (see: people sucking). That is a HUGE problem that cannot be ignored in the discourse.
d) Autism isn’t about our parents. It’s about us. If our parents want to be so helpful, they can work for an accepting world and adult services and useful communication & sensory interventions (then maybe b would be a nonissue).
“If people want a cure for themselves, I am sad that their life has been so crappy that they feel they are broken”
Kassiane,
Serious question here, not a challenge–what if a person just doesn’t self-identify as autistic? Remove the fact that people suck–even though we do. But, since a cure is a hypothetical question, perhaps we can add this hypothetical situation (people not sucking) to the discussion.
As to the focus on adults, I would hope that you have read enough here to realize that is a major focus of this blog. For the few of my comments sent to the IACC that have been made public, I am on record there as well as requesting an increased focus on adult issues. Those comments which are not public have the same focus. And there are many.
As to the first part ” Autism isn’t about our parents. It’s about us.” I agree. But, at the same time, being a member of a family isn’t about autism. I look to the communities–autistics, parents, professionals–to help inform me and enable me make a better life for my kid. But the primary community for us is the family.
Frankly, for me, autism or no autism is not the question (even if it were a real choice). The question is how to make a situation where my kid can be happy. What bothers me is the implication that autism=unhappy and somehow non-autistic=happier. That is damaging.
Harold, if you read my piece, you’ll see that I’m interested in engaging in dialogue with parents, and that I am not interested in dictating to parents what to do for their children — any more than I am interested in anyone dictating to me how I should view my life.
I’m also quite clear on the concept that my experience of autism is not everyone’s experience of autism, and that not all problems can be solved by accommodations or greater acceptance. As one parent of a young man on the severe end of the spectrum said to me recently, there is no accommodation that can mitigate the fact that bees buzz, babies cry, and dogs run — all things that give her son great pain. I understand why parents want to ease that kind of suffering with a cure. Truly, I do. I’m a parent, too. It pains any parent to watch a child be in pain that can’t be eased.
But just as you worry about a cure being kept from your child, I worry about a cure being forced on the rest of us. We really need to get that issue sorted out, for everyone’s sake. But we never will do it while we’re engaging in diatribe rather than dialogue.
“Of course by asking such questions I am pre-branded as seeing things in black and white aren’t I?”
No, it’s because of your behaviour over a period of years, over multiple websites, towards multiple people, on a number of subjects, including such hilarious and utterly shameful examples of dismissing research based purely on your own son and dismissing the work and knowledge of other people based solely on the fact they disagree with you.
Consider yourself lucky that you are still allowed in many of these places at all.
Considering the upset that my youngest cannot go places like his older and much milder bro can… I’d say that given a choice the kid would like a cure.
Also, accommodations cost thousands, upon thousands of dollars per person over a lifespan. Who’s paying?? And if there is a way to ameliorate symptoms and allow the autistic person to work, what gives them the right to refuse and live off the dole??
Lastly I get really tired with the anti-cure camps “brain transplant” ideology of cure. Having “cured” one, his personality is changing solely b/c he’s become an irritating tween and working on being a PIT… teen… Like all “normal” children. The rest of the personality change was learning to speak, to read, to do math, how to behave appropriately in public and managing aggressive behaviour… ALL people need to do these things and being autistic does not give you the right to be exempted from the same rules of conduct that everyone is expected to exibit in public. I don’t see these changes as being “fundamental” or “changing his personality”… this is called “growing up and becoming an adult”.
SO… should they ever find something to improve executive functioning, take the edge off of sensory issues, and allow those with congnitive disabilities to learn easier… Harold and I will fight for the first spot in line.
We OWE them to teach them to become independant adults… not keep them dependant and make ourselves feel better by allowing them to be as autistic as they can.
In the meantime we should continue making this world less dysfunctional for people and be more accepting adaptable and embracing.
Again, I must bring up that autism is not just one thing.
Those of you who are against the idea of a cure, consider the following scenarios:
In cases where autism is caused – or at least precipitated by – discrete, environmental events (maternal infection, peri-natal hypoxia, etc), is the prevention of these events, and the subsequent reduction of the resulting ASD, a bad thing because we are decreasing neurodiversity?
What if (hypothetically) the cause of a particular form of ASD is the misexpression of a protein that doesn’t impact development until 8 months of age, at which time it causes/contributes to autistic regression. If we could test genetically for this at birth and then supplement protein levels at the critical interval (similar to what is done with PKU), we may prevent the ASD. Is this a “cure”? Do you support it?
Would it be wrong to “cure” say… Rett syndrome, which is on the autism spectrum, and involves debilitating seizures, loss of coordinated hand movement, and, often, premature death?
Kassi,
Uh-huh. I think Alison is probably regretful of what she said. In fact I know she is as she’s said so. We all change. If you’re going to put yourself in the ‘people can’t change’ category you should look at who you’re standing with.
I agree but the fact is these people exist. And they might see their lives in different ways than you and I. I can’t pass myself off as a neurodiversity campaigner if I also believe I know better than some autistic people do about what they want.
I agree its very difficult to see how it could but I think we have to try to frame that debate. Who else but autistic people and their allies should speak loudest?
But an accepting world means accepting _all_ viewpoints of autistic people. To do otherwise (it seems to me) is hypocritical. I might not like it and I won’t argue in favour of it but I cannot deny that some autistic people, for whatever reasons, want a cure.
I have to say I think that people who judge ALison Singer for the “driving off the bridge” comment are misunderstanding her. She was not wanting to kill herself and her child because of Autism perse’. It was the sense of desperation she was feeling at the time due to the barriers and conflicts she and her child were coming up against. She, in a moment of panic, fear and stress, went through a thought process many people do. The one when you feel there is no positive solution ahead, only more misery. This is the thought process most people undertake just before they suicide and it is a desperately unhappy place that deserves compassion.
The facts are that she did not act on her thoughts that day. What she shared in that video was a moment of personal insight regarding how hard things had been for her and how worried she was for her child’s future. To judge someone for heart breaking honesty is a bit harsh. Instead of allowing that fear and hopelessness on that day overcome her, Alison has gone on to make a difference within the ASD community. That is something to admire in my opinion, whether you always agree with her or not.
Sharon, in my opinion, what Alison said was wrong at the time. If nothing else it was provocative beyond necessity and I think it had the possibility of encouraging those who were on the edge so to speak to take that final step.
However, that was years ago and from my own conversations with Alison I think she regrets putting across the impression she wanted to remove autism from her life in so dramatic a fashion. Lets not forget the whole thing was an Autism Speaks production and that Alison Singer is no longer a member of that organisation. I do believe its time to move on. Otherwise we get no where.
Some are doubting there’ll be a cure at all, some in their lifetime. I’m not so sure. I believe that ‘cure’ might be preventative rather than ‘after the fact’. Lots of Down Syndrome babies are aborted and whilst I am not against abortion at all, I am concerned that abortion on the possibility of having a non NT child gives a bad and wrong impression of that disability.
As to what shape an actual cure might take. I have no idea. Those with a firmer grasp of that current science say theres no possibility. I am again not so sure. I would like to establish a position on how such a thing couldbe used before rather than after its possible invention.
@Sharon: I’m at physical and legal risk from all that strongly supported “heartbreaking honesty”. When I, as an autistic person, am honest about stress (and oh do I have it. If I start typing about it I will not shut up, but suffice to say if I wanted to fight 5 legal battles at once, they keep throwing themselves at me), then I’m being difficult and unempathetic. When people express their wish to immediately dispatch people like me, they’re being “honest and courageous”. Screw that with a garden tool.
@Kev:
a) I have never seen anything expressing regret. I’ve seen lots of “I am sorry people were offended by that comment” and justification. There is a difference.
2) If an autistic person wants a cure, that is their right and as much as I disagree, I respect their wishes. What I cannot and will not agree with is all the comments, media, other making autism all about the parents. It isn’t. I’m sad for my autistic compatriots who feel broken, because that feeling sucks, and I want them to ultimately get their needs met–even if I disagree with what they think’ll do it. But that’s way different from a parent deciding their kid has no worth unless they are neurotypical.
@Sullivan: I don’t understand what “don’t identify as autistic” means? You mean like say they ‘have autism’, or like they feel stuck inside a shell or whatever? I don’t get the question.
And the hypothetical of people not sucking is something I cannot currently wrap my head around.
(Disclaimer: I am a crappy communicator at the best of time, and as several thousand things are going to hell all at once mostly because of ‘awareness’ merging with people sucking, I am worse than usual. And pissier than usual).
Kassiane,
thanks for taking the time to comment here. It is stressful to discuss these topics. At least it is for me. My question was basically an analogy to gender identity (for want of a better analogy). If an autistic feels that he/she is a non-autistic?
The hypothetical of people not sucking flies in the face of thousands of years of human history. I realize that.
As someone on the spectrum with Asperger’s, who has worked for many years understanding the neuroanatomy, genetics and the neurodevelopmental physiology of autism, I am extremely confident in stating that there will never be a “cure”, the likes of which the curebies want. Never.
That is an extreme statement and it needs some qualifications.
“Cure” means different things to different people. To the curebies, “cure” means that their ASD child disappears and an identical looking NT child appears in their place. Without the ability to reform nervous tissue into a different neuroanatomy with something like Mr. Scott’s transporter (in other words magic), that won’t be possible. If it were possible, it would be like a brain transplant, the former person is destroyed and a different person substituted. No one else considers a “treatment” that destroys an unwell person and substitutes a different well person to be a “cure” of anything.
There will be treatments that will improve functionality, improve social interactions, enhance the desire to be social, and which will reduce the adverse symptoms of autism. People with autism will want these treatments once they understand them. People who embrace neurodiversity will want these treatments for people they care about.
Curebies will want these treatments too, but will then not be satisfied because they will not affect the “core” symptoms of autism that curebies find objectionable. The symptoms that curebies find objectionable are the symptoms they use to distinguish someone with autism from someone who is NT. Until everyone of those symptoms is eradicated and the curebie can’t tell that their child is not the “perfect-NT-Stepford-child” that they want, they will not be satisfied.
What curebies want is to change their ASD child into an NT child that fits the “NT-child-shaped-hole” inside of them. There will never be a way to do that. The curebie has to change the “child-shaped-hole” inside of them to match the child they have instead of the child they want.
There has been a lot of concern about prenatal genetic testing. I am extremely confident that prenatal genetic testing will never be successful except for conditions where there are deletions or duplications. The type of autism that runs in families will not be susceptible to genetic testing. I appreciate that a great many researchers working on autism genetics don’t subscribe to this idea, but so far they have not been able to identify any genes associated with autism. In the largest study to date with a few thousand subjects, no single gene was responsible for as much as a factor of 2 in incidence. What that means is that no single gene was responsible for increasing the incidence from 1 per 100 to 1 per 50. The researchers keep saying they need larger studies, but study size is limited by the total population. If we assume that there are specific genes that do increase the incidence, we know that the increase is less than a factor of 2. If we assume that there are genes, and each gene have an effect size of 1.33, and those genes interact, then how many genes does it take to get a 1/100 incidence? (1/1.33)^16 = (1/100). What kind of population does it take to analyze the effects of 16 genes? 16! = 2×10^13, or about a hundred times more people than have ever lived.
But we know that autism is not solely genetic. MZ twins can be discordant for ASDs. Teratogens like thalidomide and valproate increase the incidence of autism. Maternal stress increases the incidence of autism. If non-genetic factors increase the incidence of autism, then how can prenatal tests determine the autism status of the fetus? They can’t. Autism is a property of a phenotype, not a genotype. The same genotype will support a phenotype with autism (when exposed to valproate) or without autism (when not exposed). The same genotype will support a phenotype with autism when subjected to maternal stress in utero and a phenotype without autism when not.
Any prenatal test is going to have a false positive and a false negative rate as well as true positives and true negatives. What will the cost of a false negative be to the producer of the test? A lifetime of support for an autistic individual? Lets say the liability for a false negative is $1 million. If the test producer allocates $1,000 per test to liability for false negatives, the false negative rate needs to be less than 1 in 1,000. Since the average incidence is 1 in 100, lets assume that by finding a combination of genes that produce a 20 fold higher incidence, up to 1 in 5, that such a test would be good enough. How many genes does it take at 1.3 per gene to get to 1 in 20? I get about 11. How many individuals does it take to test 11 genes? 11! is 40 million. That is only about 10x the number of autistic individuals in the US given a 1 in 100 incidence.
The idea of a “cure”, either by altering neuroanatomy or by eugenics is simply not going to happen. It really is time to stop wasting resources on wishing for a “cure” and focus on helping people with autism cope as best they can and on configuring society so that people with autism are not brutalized at every turn.
Research into understanding autism should continue, even the genetic stuff should continue, but the focus should stop being “cure”, or “finding the gene” for autism, because it is already known that there are too many to diagnose autism genetically even if it was purely genetic which we know it is not.
@Sharon: The problem isn’t so much what Alison Singer thought and said as the context in which she made it known. If she had expressed these thoughts in private to a friend, or a therapist, or a family member, or God — or even if she had written a well-considered public piece about the thoughts that can go through people’s minds when they see only miserable options looming for their children — I wouldn’t have a problem with it. But she talked about wanting to drive off the bridge with her child in a video made to disseminate fear and misinformation — and she said it in front of her child. From what I’ve read, she seems to have remorse for having done so, but it doesn’t change the impact of what she said and the context in which she said it.
I don’t feel angry at her in particular about it, though; I tend to stay away from feeling angry at particular people because there are far too many people engaging in nastiness toward autistics to just choose out one or two. I’ll speak to the crappy things people do and say, but I don’t tend to nurse any anger toward the people themselves. It takes too much energy and, besides, there’s more than enough anger to go around in the autism community without my adding too much to the store.
@ Rachel, look I’m not saying what she said was good. I’m saying we need to stand back a minute and understand her intention without assuming the worst. Ive seen the video and I hate it. You know my blog posts well enough to know I certainly do not share the curebie philosophy. But I think Alison has moved on from those days and it’s a shame people want to keep thowing an error of judgement in her face.
@kassiane, I’m sorry if I offended you in anyway by asking for some understanding of Alison’s viewpoint. I understand why a ‘cure’ narrative may seem to you like an effort to dispatch Autism, but lets face it, it wont be retrospective so you are at no risk. And like daedalus2u I doubt we will be close to any cure in the pure sense, at least in our life time. Just to be clear. If I had a choice of a cure for my son I’m really not sure I would utilise it. I think that would be his choice when he was able to make it. I’ll take him as he is for now.
Very interesting post, and interesting discussions in the comments too.
I get the impression often that parents of autistic children get painted as villains; that they are evil for wanting their children to live their own (the parents’) idea of “the good life”. That they don’t understand that autistic people too can have a “good life” while embracing their autism. But if that is the problem here, then merely pointing a finger at it and screaming “evil” doesn’t help. We all have our own notions of what a good life is – regardless of whether our children have ASD or not – and we want that for our children as well, there is nothing wrong or un-natural in that. If it conflicts with what is objectively good for the child, then the parent needs information and education, not attacking. Attacking just drives them further away from having their mind opened to different possibilities (since it puts them on the defensive), and quite possibly towards even more extreme views held by people who are more welcoming to their concerns.
Even as adults – regardless of our challenges – we remain part of family units. A parent never stops being a parent. It would be horrible to think of “emancipating” autistic children (and then adults) from the influence of their NT parents. What a horrible goal – to effectively tear apart a family because of different attitudes towards autism. Part of the beauty of the neurodiversity movement is that it allows for and encourages all the voices, and to embrace those differences. When the fringes of the neurodiversity movement pits children against parents, or effectively says NTs don’t and can’t understand autistic people (that only autistic people “truly” understand the autistic perspective), it does itself a disservice and creates distance – rather than understanding and empathy – between members of the autism community. That autism community is not just autistic people: It is the people who love autistic people too.
@Sharon: Clearly you’ve never been stopped by police for walking while autistic. Never been attacked for walking while autistic. Never been forced out of a college class and told that you, with your 4.0 GPA, don’t belong in college *because you are autistic*. Clearly you’ve never had your neurology used as a reason to hurt you and threaten you. I have. This week. “Cure” and “prevention” may not directly affect my life, but you bet your ass that the kind of “awareness” that the I JUST WANT A BAGEL!!!!!!!!! video started could easily-and I mean EASILY, I am a tiny woman with adrenal insufficiency in an area with trigger happy cops-get me seriously injured or killed. It’s not just about cure/prevention or not–it’s about what the rhetoric does to real autistic people RIGHTNOW, legitimizing treating us as not really real people.
Autism/Oughtisms: There are a whole lot of autistic people who leave their families to escape horrendous abuse. Or are kicked out because they’re autistic. The things many autistic adults have survived are pretty evil–jussayin’.
And no, an NT parent or friend or family member or whatever can’t understand what it is to be autistic, any more than I can understand what it is to be NT. That shouldn’t be contraversial, it seems self evident.
@Kev: I’ll believe she regrets it when she says so with no justifications attached. Not like what I, as a nonperson who isn’t even worthy of a stupid community college PE class according to the stupid community college, actually matter, but that’s how it is. People don’t get forgiven until they’re sorry.
@Kassiane I am sure you are aware that you dont have to be Autistic for those things to happen to you. There are many shades of humanity that lead to prejudice and injustice. My neurology has caused me numerous problems depsite not having Autism. PLease dont misunderstand my position re Alison. I am on your side when it comes to acceptance of difference in all it’s forms.
@Kev, I find it hard to say it is was “wrong”. It was how she felt. Are we going to tell people what and how they should feel? Yes it was hard to hear, and yes it was a gloomy picture presented, but I do not think the intention was wrong, albiet misguided. When parents kill their Autistic children it is because they feel they have nowhere to turn, they are out of options. The conversation we are having here that vilifies a woman for naming her pain adds to that sense rather than offers a compassionate response that can lead to support and alleviate hopelessness. C’mon people, lets remember that no one loves a child with Autism like the parents do (in most cases). It is this deep sense of affection that leads to overiding anxiety and fear, and the sense of being unable to cope. I am prepared to state here clearly that despite loving and admiring my son, there have been times I have been driven to the brink of actions I have been shocked by when contemplating them in calmer moments. It is easy to judge me and others but in the same way I dont know what it’s like to be Autistic, others dont know what it’s like to care for a child who pushes you all day every day through sleep deprivation and all the other demanding behaviours. We are but human.
@Sharon: We’re really not in conflict about this. I’m supporting your point of view that people be allowed to speak their feelings without being vilified for them, and I understand Alison Singer’s despair at feeling that there were no appropriate services for her child. My only point is that there is a time and a place to speak those kinds of feelings, and that she chose the wrong ones. I think we probably agree on this.
As for where parents come in here, I think it’s important not to overgeneralize. There are parents who love their autistic kids, and there are parents who despise them because they are autistic. Not all parents who feel pushed to the edge of hurting their children do it because they have nowhere to turn; a lot of them do it because they want “normal” children, pure and simple. I had parents with all kinds of resources, and who literally tried to beat me into normalcy and compliance, so I know what Kassiane is talking about.
On the other hand, there are many, many parents like you and A&O who love your children as they are and want to teach life skills rather than enforce normalcy. Parents like you are our allies. We may not see eye to eye on everything, but we can work with the differences and build bridges, because there is mutual respect.
Thanks Rachel.
I watch movies like Loving Lampposts and other documentaries, I talk to people that care for Autistics and talk to Autistics themselves and the thing that has struck me more than anything is that it never seems to matter the level of severity, they just do not want to be “cured”.
Even those that can not speak, like Carly (Carly’s voice), as an example. She can not speak, she can type. Yet she does not seek nor desire a cure.
Loving Lampposts features several Autistics that can not speak and they do not want a cure.
Most of us would consider them disabled, “unable to live life to their fullest”… but they love who they are.
I’m sure they’d love to be able to speak and have other barriers removed but not to be cured.
Many parents are unable to get a response from their children so they do what they feel is in their best interest. They see a child that needs help… but after these documentaries and talking to many of them, I can’t help but wonder… maybe one day they will find a way to communicate and when they do, will they say the same thing I’ve been hearing? or will they in fact say that they did want a cure?
In my experience, and it’s just my experience, I’ve yet to hear from an Autistic that has found their voice (through typing or otherwise) that they wish that they could be cured.
I like what Daedalus had to say, and pretty much agree wholeheartedly with that view.
I would also add that we take too closed off a view when we think of the genetic causes of autism as they affect just one individual. It is a poly-genetic syndrome. Probably different gene combiniations contribute to different symptoms of different severity. We can’t remove those genes from the gene-pool, and probably wouldn’t want to if we could. They probably exist in the first place because they are adaptive for some purpose – the vast majority of them do not appear to be defective at all.
It is simply the combination of them in any individual that produces the neurotype. After heaps of research, they have only found a very few actual defective genes affecting a handful of autistics. Most of the rest, as Daedalus says have the same genes as are found in the general ‘neurotypical’ gene-pool.
Simon Baron-Cohen has done a bit of research showing that autistics tend to have close relatives who are scientists and engineers. Autism may actually be too much of a good thing.
So I am not interested in a ‘cure’ at all, but in improving supports and communication, and fostering independence and making the best of autistic skills.
a quick read of this thread…leaves one with following operative words/phrases to ponder: people suck; diatribe v. dialogue; stupidity; cure v. dont; It’s about us; world less dysfunctional; hypocritical; heart breaking honesty;
COMMENT
pondering heart breaking honesty: it seems we have a stupid, hypocritical, talk no walk compassionate, society that sucks up to authority…and authority (legs) that, in turn, panders to society’s baser (human?) nature. irony, irony, irony…all is irony…and btw so is vanity.
to a specific: cure v. dont…
cure should be up to the individual…which reminds us the spectrum is made up of all degrees of individual autism…which raised the question: how should cures be applied to the non-verbal children/adults. cure/dont-cure should always be discussed within the parameters of degree (eg, verbal v non-verbal)
it make little sense to discuss verbal hi functioning cures and lo functioning non-verbal cures as one and the same…and sadly we seem to discuss these apples/oranges issues in the same breath.
[Stuart Duncan (SD) say] I’ve yet to hear from an Autistic that has found their voice (through typing or otherwise) that they wish that they could be cured.
you might listen to those who have been committed to JRC (judge rotenberg center shock, torture, school)…i strongly disagree with JRC programs but bet the farm most of the autistics there would welcome a cure.
also SD say: (Carly’s voice), as an example. She can not speak, she can type. Yet she does not seek nor desire a cure.
getting into semantics…but that carly found her voice could be considered a cure…so not sure what carly (anyone) considers a cure.
always suspicious of my way or the hi-way positions…my 40 years living with non verbal, lo function autistics is different than SD’s
btw hate the lo/hi functioning terms/label…any suggestions as to a better terms welcome…believe lo are as intelligent as hi whether on or off the spectrum…communications is the difference.
stanley seigler
a quick read of this thread…leaves one with following operative words/phrases to ponder: people suck; diatribe v. dialogue; stupidity; cure v. dont; It’s about us; world less dysfunctional; hypocritical; heart breaking honesty;
COMMENT
pondering heart breaking honesty: it seems we have a stupid, hypocritical, talk no walk compassionate, society that sucks up to authority…and authority (legs) that, in turn, panders to society’s baser (human?) nature. irony, irony, irony…all is irony…and btw so is vanity.
to a specific: cure v. dont…
cure should be up to the individual…which reminds us the spectrum is made up of all degrees of individual autism…which raised the question: how should cures be applied to the non-verbal children/adults. cure/dont cure should always be discussed within the parameters of degree (eg, verbal v non-verbal)
it make little sense to discuss verbal hi functioning cures and lo functioning non-verbal cures as one and the same…and sadly we seem to discuss these apples/oranges issues in the same breath.
[Stuart Duncan (SD) say] I’ve yet to hear from an Autistic that has found their voice (through typing or otherwise) that they wish that they could be cured.
you might listen to those who have been committed to JRC (judge rotenberg center shock, torture, school)…i strongly disagree with JRC programs but bet the farm most of the autistics there would welcome a cure.
also SD say: (Carly’s voice), as an example. She can not speak, she can type. Yet she does not seek nor desire a cure.
getting into semantics…but that carly found her voice could be considered a cure…so not sure what carly (anyone) considers a cure.
always suspicious of my way or the hi-way positions…my 40 years living with non verbal, lo function autistics is different than SD’s
btw hate the lo/hi functioning terms/label…any suggestions as to a better terms welcome…believe lo are as intelligent as hi whether on or off the spectrum…communications is the difference.
stanley seigler
We are making the most of ABA for teaching our son, but not for deleting ‘autistic’ behaviors when he is on his own time (modern ABA uses these behaviors as reward/break time, rather than trying to delete them, these days). I know that a segment of the ABA field promote ‘recovery’ as the goal – but frankly that is just semantics – like calling it ‘therapy’ when it is a method for teaching adaptive skills 90% of the time. Our boy has learned so many daily living skills I doubt he would have mastered at all without specialised teaching.
Maybe he would have started talking on his own without ABA, but that would have required him to actually attend to the speech around him. If he continued the path he was taking when we started, I doubt that would have happened. He was actively avoiding all contact. I know that eye contact feels intrusive and makes me anxious so that I can’t maintain eye contact and communicate at the same time. Extending that I guess that not only eye contact, but our unpredictable intrusive behavior (picking him up and doing things to him, or taking him places) was making him anxious. Hence retreating into rituals, including the awful eye-poking. Using ABA to teach him a lot of what goes on around the house, and to communicate (both ways) really reduced his anxiety, possibly to the point where he was able to start observing and picking up language on his own. Either way, ABA directly or indirectly facilitated his speech. We still write down some notes for him as he learns better reading than hearing, but we are free of lugging picture cards around.
One aspect of being on the spectrum, and parenting a severely autistic child is that I find it extremely difficult to cope with the constant vigilance he requires. When I need time to engage in some of my own autistic stress-reducing behaviors with a bit of peace and quiet, he decides it is a good time to recreate a Sodor snowscape by dunking several rolls of toilet paper in the loo and coating the bathroom floor and half his train collection in papier mache. Or mulch cornflakes and milk into the carpet all over his trains.
His ‘obsession’ is recreating Thomas the Tank Engine disasters as messily as possible. He has trashed the house. I have lost all control over my own time and actions when not at work. Then there is his running away – several police call outs and one full blown search-and-rescue. We are tackling this in ABA by teaching him road safety, and also how to get to Uncle Bob’s place safely (he attempts to abscond my brother’s place, he (age 31) has an amazing Thomas wooden railway set up; one of the ‘autism’ genes must also code for ‘trainspotter’). After several years of trying to teach him not to run away, we have given up on that – if he can’t see you, your rules no longer apply.
So while I am not interested in a ‘cure’, I am extremely interested in research which improves the quality of my son’s life, and also of our family life. Sure, autistic adults are evidence that he may grow out of some of the problem behaviors – although others haven’t. But families are also under stress now, when children are children, as well as worrying about the future.
So my question to other autistic adults, is if you were to have a child who is very severely affected, and is not looking like they will be one of the kids who will ‘grow out of’ harmful behaviors, what would you do?
And for those who are autistic adults parenting autistic children, what are you doing? I sort of get the impression that autistic parents are not as ‘curebie’, but for those with kids with severe behaviors, how do you cope? Do you just let your kid be ‘autistic’, or do you use interventions?
a quick read of this thread…leaves one with following operative words/phrases to ponder: people suck; diatribe v. dialogue; stupidity; cure v. dont; It’s about us; world less dysfunctional; hypocritical; heart breaking honesty;
COMMENT
pondering heart breaking honesty: it seems we have a stupid, hypocritical, talk no walk compassionate, society that sucks up to authority…and authority (legs) that, in turn, panders to society’s baser (human?) nature. irony, irony, irony…all is irony…and btw so is vanity.
to a specific: cure v. dont…
cure should be up to the individual…which reminds us the spectrum is made up of all degrees of individual autism…which raised the question: how should cures be applied to the non-verbal children/adults. cure/dont cure should always be discussed within the parameters of degree (eg, verbal v non-verbal)
it make little sense to discuss verbal hi functioning cures and lo functioning non-verbal cures as one and the same…and sadly we seem to discuss these apples/oranges issues in the same breath.
[Stuart Duncan (SD) say] I’ve yet to hear from an Autistic that has found their voice (through typing or otherwise) that they wish that they could be cured.
you might listen to those who have been committed to JRC (judge rotenberg center shock, torture, school)…i strongly disagree with JRC programs but bet the farm most of the autistics there would welcome a cure.
also SD say: (Carly’s voice), as an example. She can not speak, she can type. Yet she does not seek nor desire a cure.
getting into semantics…but that carly found her voice could be considered a cure…so not sure what carly (anyone) considers a cure.
always suspicious of my way or the hi-way positions…my 40 years living with non verbal, lo function autistics is different than SD’s
btw hate the lo/hi functioning terms/label…any suggestions as to a better terms welcome…believe lo are as intelligent as hi whether on or off the spectrum…communications is the difference.
“It’s about us”
INDEED about those who have been there done that…but how do the non-verbals tell us about being there.
stanley seigler
get this message:
“Duplicate comment detected; it looks as though you’ve already said that!”
but what i said not posted…
stanley seigler
Hello friends –
Interesting thread. Very nice. Here are my thoughts:
@Sharon –
Very, very nicely stated regarding Allison Singer. I was exactly where she was emotionally for a long time, and so were a great many of my autism parent friends. The reality is that lots of people have had similar feelings, and it doesn’t have anything to do with seeing an internet video that colors their perceptions, but rather, the very real and often times unrelenting difficulties in raising a child who is severly affected by autism. There does seem to be a range of research showing that parents of children with autism consistently report more psychological problems adapting that parents of children with other developmental disorders. One conclusion that I’ve come to along this journey is that I am not going to judge anyone.
@Sullivan –
Regarding the possibility of people that don’t identify themselves as autistic first (or at all); very nicely stated. I’ll ask again, would different lables ‘help’ this divide somehow?
@Esattezza –
Nice questions. I’d also add to the list, maternal supplementation of agents to ameliorate innate immune responses in the mother if she were to become sick, which has been shown to address physiological and behavioral problems in animal models. (here, here, or here.) For that matter, what about selective mating, aging parents, and/or assisted contraception, which we discussed shortly previously, which may have the chance of ‘reducing’ the number of people born with autism, if addressed culturally. Is this ‘wrong’? For some reason, there is a subset of people who think that only a genetic test coupled with abortion (or murder) are our only answers in this area. They aren’t.
@Everyone –
I’ve seen a lot of comments here on the ‘impossibility’ of curing autism. Unfortunately, the semantics of this get very difficult, and pretty much everyone has their own idea what autism is, and what would constitute a cure. I do think, however, it is salient to point out literature that indicates that a near entire removal of autistic behaviors has been documented as the result of interventions.
Folate receptor autoimmunity and cerebral folate deficiency in low-functioning autism with neurological deficits.
Intravenous immunoglobulin treatment of children with autism.
Most reasonable people eventually agree that there are many types of autism, with a great number of causes and behavioral manifestations. Given that, I don’t understand the certainty that seems so pervasive that a cure is impossible. We don’t know nearly enough to make this type of blanket statement.
I think a lot of this has to do with the belief that autism is ‘hard wired’, a vast, vast over simplification; and one that mandates that all cases of autism ultimately have the same underlying cause. While there are a lot of studies to indicate physical changes to the structure of the brain in autism, this does not, in an of itself, indicate nothing can be done. We have plenty of studies from the schizophrenia arena that show morphological changes to the brain, and yet, that is a condition that in many cases, can be handled with medications.
For example, here is a double blind, placebo control study of aspirin as an adjuvant therapy in schizophrenia, Adjuvant aspirin therapy reduces symptoms of schizophrenia spectrum disorders: results from a randomized, double-blind, placebo-controlled trial, or another trial, using a different anti-inflammatory Celecoxib as adjunctive therapy in schizophrenia: a double-blind, randomized and placebo-controlled trial
It is postulated that the resultant decrease in a state of neuroinflammation is responsible for the effects; but no one thinks that the addition of anti inflammatories is physically modifying the structure of the brain. (except, maybe dendritic spine shape. . .) What this should tell us is that changes in the brain aren’t necessarily the stopping point for therapies. Whether or not the effect of those therapies rise to the level of ‘cure’ is a difficult one to quantify, but if the only reason they can’t is the ‘hard wired’ argument, or the more nebulous, “you don’t understand us / it is self evident” argument; then I think the intellecutally honest observer must admit that we really don’t know such a thing is impossible; especially on a case by case basis.
– pD
stanley seigler ,
I don’t like the low/high functioning terminology either but it is what it is. And what it is, I fear, will only be amplified by the new DSM-5 but that’s a whole other topic.
i think the world should except diabetes and not find a cure for it *rolls eyes*. How dare you want to leave someone institutionalized unable to feed or talk when they could be “cured”. To live their life in misery.. Shame on you.
Just because it has not affected your life in a bad way doesn’t mean it’s not affecting others extremely negatively. No one says you HAVE to take the red pill, but those of us who want to leave let us. Others have a RIGHT to be happy.
“Others have a RIGHT to be happy.”
Interesting how this touches on my exact point. I am not so focused on a cure as making my kid happy. What really bothers me is the implication that disabled=unhappy and cured=happy.
Much of the rest of your comment is so obviously missing the mark of what is being discussed here that I will leave it alone.
@ pD. I think your first link actually is referring to recovery from Serum FR autoimmunity in children who happened to be autistic (including Retts).
Your second link is rather odd. The child was the only one of ten who responded to treatment, the parents had the option of continuing treatment beyond the program. The abstract is not actually specific on whether they did continue with infusions, but just notes that the child reverted back to their original state within 5 months. Did the child continue treatment but revert anyway (so this was just a fluctuation)? or did parents and researcher simply watch the ‘recovered’ child slide back into autism while withholding a treatment that they knew the child would respond to. Very strange. The behavioural measures were not described at all. My woo alarm is going off.
@Stanley and Stuart. Our parents group and other related groups use ‘high functioning’ vs ‘high needs’.
The problem is that each implies that there is a ‘low’ counterpart and the two are not mutually exclusive.
After DSM-5, most Aspergians will be ASD Level 1. I am predicting a marked drop in self-diagnosis. Although some with AS seem to think that AS is being ‘removed’ rather than folded in with autism as this petition indicates:
http://www.thepetitionsite.com/2/do-not-remove-aspergers-from-asd-in-dsm-5/
The severity levels for ASD in the new DSM are based on the level of support required. There is no diagnosis for someone who requires no support, basically the diagnosis is based on ‘deficits’, ‘marked deficits’, and ‘severe deficits’.
Then, instead of symptoms just being an ‘impairment’ as they are now, under DSM-5, they must ‘LIMIT and impair’. I guess that solves the ‘high-functioning’ vs ‘low-functioning problem’. Everybody will be low-functioning, or ‘recovered’ or something like that.
This is sort of the paradox I faced when I was told of my diagnosis. Once it sunk in, the problem behaviors that had caused me a lot of pain and angst over the years, no longer worried me. So once I got the diagnosis, the behavior was no longer ‘clinically’ significant and I technically didn’t meet the criteria any more. Other than being on meds, I am not sure I would qualify under DSM-5.
Under the new DSM-5, a person with ASD who may be working though challenges, but isn’t ‘limited’ and doesn’t need support, technically won’t qualify for a diagnosis. Instant ‘cure’!
I think that does have critical implications for neurodiversity. The ‘difference’ aspect is gone. There is only the disbility aspect remaining. They are shrinking the spectrum.
On the other hand – should neurodiversity require a ‘diagnosis’.
Hi McD –
I think your first link actually is referring to recovery from Serum FR autoimmunity in children who happened to be autistic (including Retts).
This is incorrect. From Ramaekers:
Click to access ramaekers%20autism%202007.pdf
The child was the only one of ten who responded to treatment, the parents had the option of continuing treatment beyond the program. The abstract is not actually specific on whether they did continue with infusions, but just notes that the child reverted back to their original state within 5 months. Did the child continue treatment but revert anyway (so this was just a fluctuation)?
IVIG treatment is very expensive; four treatments could have easily run between $8,000 and $10,000 (or more); so perhaps unlimited treatments was not an option. As far as the fact that only one child apeared to be a highly resonsive candidate, this speaks towards the heterogeneous manifestation of autism that I tried to reference earlier. In the case of a ‘fluctuation’, this would still be evidence that in some instances the behaviors of autism are reversible, which is sort of my point.
Regarding your woo sensor, you might be surprized to learn that children with autism have been found to be low in IgG, and that as levels decreased, behavioral severity increased
Reduced levels of immunoglobulin in children with autism correlates with behavioral symptoms.
Finally, there is a growing body of initial studies linking IVIG to progress in a variety of neurological conditions that, like autism, are associated with increased levels of auto-antibodies and/or a state of heightened inflammation.
– pD
Cure is a laden term and one to avoid for many sound reasons. I prefer the term “optimal outcome” used some in the behavioral/educational treatment literature. The term is used in the context of treatment. If assistance is needed/sought, the optimal outcome of intervention is unaided independence in the community. I may not recall correctly but I believe Deb Fine’s group at UCONN coined the term.
Sullivan wrote: “Others have a RIGHT to be happy.”
Interesting how this touches on my exact point. I am not so focused on a cure as making my kid happy. What really bothers me is the implication that disabled=unhappy and cured=happy.
So, this leads me down the path that the research should be done and autistic people should be given the choice as to whether or not they want to accept a “cure”, whatever that may be. But what if the “cure” turns out to only be effective if given early in life (ie, before the person can make an informed choice. – for that matter, what if they have such severe intellectual disabilities that they are deemed legally incapable of making an informed consent at any age?)? Do parents then have the right to make that choice? They do with childhood surgeries for physical disabilities. Heck, they do for newborn boys everyday for little more than religious reasons. I’m not saying it’s right or wrong, but our society is one in which parents will be allowed to make this decision for their child. The best we can do is spread an appreciation for neuro diversity in the meantime.
Esattezza,
I don’t claim to have this all worked out. The ethics and the logic are very tricky to me.
I place the question of identity as the primary question. An infant doesn’t contribute to the decision about, say, a circumcision. But that doesn’t affect identity. Let me take a second and discuss identity. Take away an arm or a leg from me and I lose some function, but I am still me. Change the way I think, am I still me?
Let’s say you can identify an infant that is destined to undergo a regression. Do you intervene? I would say yes. But I don’t think it is a simple question to answer. That child is has an identity at the time which is being preserved. Is that a “cure” or a “prevention”?
Let’s say I offered you a “cure” from being non-autistic. Say you would be “autistic but not disabled” as John Robison describes himself. Say that this “cure” would improve your ability to do your job. But, it would also change the very way that you perceive the world. You might lose some side interests that you have. Some things which bring you joy. It will make you more valuable to society, though. Do I have the right to tell you that you must take the “cure”?
@Sullivan: If someone feels they have the wrong OS in their brain (which is the only metaphor I can use and have make sense to /my/ brain) then they have a right to pursue options to fix that. I don’t know if that actually happens or if people associate difficulties as an integral part of the whole thing or what (if that made sense. The example my brain was using was sensory issues, if they went away I’d still process the same but there’d be a much more manageable volume of input to process).
@ pD, I didn’t have access to the full version through pubmed without attempting to log into my home library, and I am not in the country at the moment and not inclined to attempt to get this strange laptop on a strange wireless network to jump through the hoops it will take, so thanks for expanding on the abstract – which was a bit vague – and posting the link.
It sounds interesting, but not so much follow up other than this review, which seems odd – only cited by 2 other articles over 3 years, neither of which is focused on autism:
http://onlinelibrary.wiley.com/doi/10.1111/j.1469-8749.2008.03185.x/pdf
This isn’t an area I am capable of assessing so interest shown by their peers is one of the indicators I have to look at. If you have any other information, I would apprepriate links – but it does look like a very small and specific subgroup is involved.
As to Your comment re: IgG, I am not surprised at all at the link. I go into some detail on one of my pet theories here (completely unsupported by any real evidence – it is a pet theory!):
https://leftbrainrightbrain.co.uk/2011/02/the-autism-vaccine-debate-why-it-wont-go-away/#comment-139536
My woo detector was concerned over the conduct of the specific study, not the underlying theory they were testing. Many a decent theory has been set back by shonky research. Including some of my own.
Once again, working from the abstract, the authors said this about the options the parents had: “In none of these children did the parents feel that the improvement was sufficient to warrant further continuation of the infusions beyond the termination of the program.” That was for the kids who had “a mild improvement noted in attention span and hyperactivity”. They didn’t mention price in the abstract. If you have access to the full text at present, an account of why they were testing a treatment no one could afford would be appreciated. it seems horrendously cruel as you describe it!
I think you have misinterpreted my comments as well, but that is understandable since I was yakking off with only having read the abstracts. (Which is the position most parents are in if they don’t have access through a decent tertiary institution library, that is actually really scary. It would be great if one of the supposed parental support agencies had a subscription service through which parents could get join up and then get access to the major journals. That would actually be quite useful)
Anyway, I was not claiming that there not being a ‘cure’ means there could be no change to some of the core behaviors associated with autism. Afterall, I am an ABA parent. Kev and Sullivan have both mentioned the minefield that trying to define ‘cure’ is. I wouldn’t hope to draw the line. But I think that it is possible to not want to be a social butterfly, yet have the knowledge to understand what is going on in the NT world. And not want to talk, but be able to understand language and communicate your needs. And enjoy focussing on one subject, but being able to control when to do so.
Also I don’t claim that that gaining control over some ‘autistic’ behaviors is not desirable. This is my aim for my son. Not to ‘erase’ his autistic behaviors, but to give him the option to control them, to engage in them on his own terms.
From my own point of view, I would really like to have more control over the behaviors, rather than them controlling me. I like being able to focus intensely on a problem, but want to be able to choose when to do so, rather than be gripped with an obession to research and follow up topic X, when I need to do a literature review on topic Y, or cook dinner for the kids. I would like to have hobbies rather than obsessions, if that makes sense. A hobby being something I do for recreation outside of work. An obsession being something that interferes with my work. I would also like to understand what the hell is going on – these F**king NTs are winking and nodding and laughing and smirking and grinning and for 40 years, before my diagnosis, I was was getting so F**king paranoid at the secret collusion these people had that alway seemed to end in laughing at stupid old me. Even though in many situations I was ‘the boss’. For years I assumed it was because I was in some other minority group – being silly enough to be a woman in a male environment (the army – 1st career), or raised in a minority ethnic group etc etc.
But some of the aspects of AS, I can’t imagine how I would operate without – mostly stuff I didn’t realise other people didn’t do until quite recently.
So as Kev said at the start, it is all down to how you define cure. From the points you have raised, pD, and papers such as this:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2772235/?tool=pubmed
maybe there are some subtypes of autism that are amenable to drastic reduction in symptoms. With or without intervention. Quite rare subtypes I must point out.
Harking back to the differentiation between complex and esential autism, maybe the first (currently between 15-20% of cases) is amenable to ‘cures’, and the latter, being the type Deadalus and I describe above – an assortment of apparently normal genes with no apparent environmental insult is the type that represents actual neurodiversity. Just a stab in the dark based on Judith Miles’ research groups’ work. lots of links here:
http://www.genetics.missouri.edu/Autismresearch.htm
Not only is defining ‘cure’ a minefield, we also are dealing with any number of ‘autisms’
Sorry for errors. Jetlagged Aspie working on strange laptop which has been liberally treated with playdoh under some keys.
I am in Denver, Colorado. I was led to believe the place was full of cowboys. This has not turned out to be true. I have not met one cowboy here at all. All the ‘restaurants’, serve up an entire day’s food – melted – on one plate, while playing ganster rap music. Not country and western music, which I was also led to believe I would experience over here. People are very friendly though, but I have found that to be true throughout the US while travelling. For anyone who runs a blog with advice for autistic people, some advice on ‘tipping’ for visiting autistics would be really helpful. Whenever I ask locals they say something like “give them a tip if you feel like it!” or “only if you feel like it”. Frankly the thought would never cross my mind if the receipt didn’t say “does not include driver/waiter gratuities”. I had a 40 minute ride in the shuttle from the airport – 40 minutes of trying to work out if I should tip the driver, if he would be offended if I did or didn’t, or gave too much or too little. Cripes. Before the driver got in, I asked around and the other passengers gave me the useless advice above. Arrgh. If I eat out, I spend most of the meal worrying about the fricking tip. So links to travelling for autistics would be appreciated, and really sorry for the hijack.
@ McD on tipping: I’m terrible with knowing when/how much to tip a driver or bellman, but I can help you out with meals: it’s customary to tip between 15 and 20% of the cost of the meal. (Check your receipt to be sure that gratuity was not already included in the bill – most establishments will only do this with larger parties). How much to tip in the 15-20 range depends on your assessment of the service, and (IMO) how complicated your meal was (if you’ve just finished a seven course meal, your server did much more work than if you ordered a burger).
Rules I follow for tipping drivers (this is probably not proper etiquette, but it’s certainly better than not tipping at all): usually about 10% of the cost of the ride, more if you’re talking a professional car service, rather than just a cab. Though I will tip a cabbie more if they only charge per mile and we’ve spent most of our ride stuck in traffic, resulting in a fairly small bill, but a large time investment when the cabbie could have had other customers. For bellmen and the like: I usually just tip a dollar or two – maybe $5 if they’ve spend a great deal of time or gone out of their way to help me with a problem, rather than just doing their job minimally. Hope this helps, and enjoy your time in the states!
@Sullivan:
The prevention vs. cure line is about where I come down on the issue of parental/societal decision as well, with certain exceptions where severe medical comorbiddies are concerned. I understand your point about fixing a physical disability not being the same as “fixing” the way someone thinks/sees the world. However, one could make the argument that treatment for depression/schizophrenia/bipolar already does this to a certain extent, and I feel like people should have the option for themselves, or even for their children in instances where these altered thought patterns make them an immediate danger to themselves or others. Not sure how autism would fit into this paradigm.
Esattezza,
There are people who can speak much better about some of these issues (e.g. bipolar and comorbidities).
the comorbidities questions is a key one. One argument that is often levied on people who are not pro cure involves exactly this. I think we’ve already seen it in this discussion. People will say, “so, you think autistics should just live with GI pain all their lives?”. A good example would be epilepsy. Again, there are people who can and do speak to this much better than I. But no one says, “don’t treat the seizures”.
The question comes up–can you separate the comorbidities from the autism? Can you say, “this person is autistic and has epilepsy, ID, gross motor dysfunction, etc..” and say that you can cure the epilepsy, the ID, etc. and leave the autism untouched? Or, is it more accurate to say, for example, “this person has Timothy syndrome”. As a result, he is autistic, ADHD, has heart problems, etc.. In which case, if we could we would address the Timothy syndrome and the other issues will resolve?
In the end, I see a cure as a thing people hope may happen. I see a world where people don’t suck as a thing people hope may happen. I guess I’d summarize by saying, wouldn’t it be OK if both were to happen? Then we could say to a person, “you will be valued and supported no matter what. Here’s a cure. Here are the risks. Here is what we expect to happen. Feel comfortable making the choice, knowing the rest of society will value and support you either way”.
I will point out, people always seem to think of a cure as a no-risk thing. What if a cure carried a 10% risk of death, and a 10% risk of permanent injury?
I never forget the fact that the ASA started out at the NSAC–national society for autistic children. The kids grew up, a cure wasn’t there, and they had to change their focus. That was, what 40 years ago? We had the huge effort of the late 1990’s, with parent advocates lobbying to create MIND and a flurry of small/medium advocacy groups. People were convinced–convinced–that with a couple of years of chleation they wouldn’t have to worry about the future. Their kids would be cured. Their kids are growing up. Their focus is changing.
People listen to parents of small children. Now is the time when I can lend my voice to a better life for adults.
Dear Sullivan
Memo to those of you on here for the past 6 years who wanted the autism-vaccine-cure autism -bio contretemps to just go away: You lost.
Wishing won`t cure autism either Sully, so in your megamind tell everyone with autism parent/child/carer, what we should all do?
Sincerely
Sniffer
Regarding comorbidities:
I have severe epilepsy (severe here meaning: I have had my heart stop from seizures, I tend towards clusters, & my longest seizure free streak is 112 days. I counted).
During the 112 day streak (and my current 25 and counting) I was still very much autistic, still very much the same Kassiane we all know and wish would shut up. I had/have more energy, an easier time accessing language, didn’t forget how I got where I fell asleep, some of the sensory issues turn down a touch after 10 days or so, but my overall experience of the world is very much the same.
I’m pretty convinced you could cure epilepsy and I’d still be the exact same me I know-autistic, big opinions, intense dislike of loud, bright, and light touch-but without that whole SUDEP worry.
Kassiane,
I had to backtrack to find the “shut up” message others have already referenced.
You and a few other people out there are very, very important to me. I really appreciate the fact that you have enough respect for me to come here and school me on ethics.
Dear Kassiane,
Have you tried HBOT
http://www.epilepsy.com/node/971286
Sincerely
Sniffer
HBot for epilepsy is the most ill conceived idea in the history of ill conceived ideas (with the possible exception of HBot for mito). During an EEG they make you hyperventilate, cuz that often triggers seizures. Intentional hyperoxygenation is inviting a seizure. Or a lot of them.
(So I tried a barely out of trials drug and they can take it away when they pry it from my cold dead fingers).
Kassiane,
if you haven’t read here for a while, you may not be familiar with “sniffer”. Given a short period of time, he/she will likely “prove” to you that HBOT works using YouTube videos. You’ve already seen the quality of information he/she has to offer. It’s impossible, you see, to have a heart attack or stroke in an HBOT chamber. Must be true. Someone may have written it somewhere on the internet.
I’m with you on the idea of HBOT for epilepsy. First real paper that showed up on my search. Not a great one, but not a good indication of why one would try HBOT.
http://www.ncbi.nlm.nih.gov/pubmed/3733413
Dear Kassiane,
HBOT is at increased pressure thus increasing oxygen in the blood plasma by 1000 percent depending on the deth of the dive.
I read somewhere on one of the HBOT forums that it was impossible,to have a heart attack or a stroke while breathing oxygen at increased pressure during an HBOT session.
It would seem one problem you have is with absorbing suffice oxygen in your plasma hence the seizures.
Sincerely
Sniffer
Sniffer you don’t half talk some old bollocks.
Sullivan:
“The hypothetical of people not sucking flies in the face of thousands of years of human history. I realize that.”
You also realize that there are many millions of examples of people not sucking, even many millions of NTs that don’t suck. We know that people can act in ways that do not suck. We know how to do that. We don’t need a gigantic program that sequences millions of genomes, figure out how to tweak them, just so, to change the neuroanatomy of people to “cure” something. All that has to happen is for the people who suck to decide that they won’t act in sucky ways.
It is people who are fully competent and “normal”, those who are neurologically typical who (supposedly) are able to “control” themselves who have to change their behavior to be non-sucky. Supposedly that is something that NTs can actually do.
Why can’t NTs do that? Who is “broken” here?
I know this is a rhetorical question, but if people are wishing for magical change on behalf of someone else, I would wish for all those sucky NTs to not be sucky any more. I appreciate that those who don’t want to be sucky are already not sucky. They don’t need to change.
Kassiane, The idea of HBOT for epilepsy just proves that there is no quack idea so bad and so dangerous that quacks won’t push it with only a facile and non-physiologic “more is better” idea behind it. HBOT would very likely make the symptoms of RS worse. It makes periodic breathing worse in the MeCP2-/+ mouse, and this was only 40% O2 at one atmosphere.
http://www.ncbi.nlm.nih.gov/pubmed/18006868
A question, since breathing just came up, is the drug that is helping you a carbonic anhydrase inhibitor? They are sometimes used for epilepsy.
Dear daedalus2u
Is this the same mice they used in the thalidomide trials that proved the thalidomide drug safe.
Ignore whats going on with the humans it aint showing in the mice ??
Sums your thinking up.
Sincerely
Sniffer
Dear Kev and Sully,
Keep away from the subject matter, why don`t you it might keep you awake at night.
Sincerely
Sniffer
P.S. I see AOA have a new article on seizures well worth a read
>Memo to those of you on here for the past 6 years who wanted the
>autism-vaccine-cure autism -bio contretemps to just go away: You >lost.
On the contrary, aside from a few closed forums, where the idea is protected like a rare pathogen, and a few open forums which allow any idea, no matter how foolish to be discussed, the ‘vaccines cause autism’ idea has died a lonely death. Like bogus claims for an upcoming Rapture, the idea is still worth a laugh, but I haven’t seen a serious discussion of the idea in ages.