The main reason why the politics of autism are so polarized is that nobody knows very much about autism.
April is Autism Awareness Month and I have chosen to make folks aware of the complexities and conundrums surrounding its politics, which are replete with divisions, debates, and diatribes fueled by self-advocates, special interests, activists, militants, and conspiracy theorists. The two main camps — though each has its own sub-groups, factions, and radical element — consist of people who view autism as a devastating neurological disorder that must be cured, prevented, and eradicated, and those who see autistic people as having a natural variation of human neurological wiring that must be tolerated, accommodated, and respected.…
Article comments
26 - A
You made one sentence a paragraph long. That run-on was painful to try and read.
27 - Estee Klar-Wolfond
As a mother of an autistic child and founder/exec.director of The Autism Acceptance Project, I thank you for writing this. We have included a link in this month's TAAProject newsletter.
28 - melvin polatnick
Hello again Margaret
The best care that can be given to dysfunctional people--is a large enough federal check.That alone would make most of them functional enough to survive.The rest can choose group homes,and then given good care.Lets stop wasting money trying to make a square peg fit into a round hole.With a decent amount of federal dollars in their pockets they can enjoy life as well as Neuro-typical people.The billions of dollars spent on quack cures for the dysfunctional could better be used in the hands of those that need that money to survive.
29 - Dean M
At first I was a bit put off by the use of the word disability. But after reading the whole article, I am glad to see that there are autistic children out there with parents who want real answers rather than running to quack science. The URL I have supplied with this comment is a perfect example of what children raised by parents who want to turn them into something they are not end up like as adults, and should be read by every curebie who thinks they are helping their child by trying to make them what I refer to as (in my best Michael Ironside slur-voice) "normie".
30 - Noetic
"The view that autism is not a disorder but simply a different way of being is presently a controversial idea that is strongly criticized by parents who hope to someday see their autistic children become neurotypical"
I think that is perhaps a misperception - sure some parents have that (impossible) wish but many just want their kids to be able to look after themselves as much as possible, to learn how to cope with this world (the same as all parents *should* want their kids to be able to cope and understand) and live a happy, fulfilled life
31 - Noetic
Another thought - I think a lot of the "animosity" between parents and these advocates stems from the fact that they both seem to have massive assumptions over what the other side believes. Sure there are some on each side that do hold these extreme beliefs but the majority are nothing like that.
For example, disliking the idea of a cure does NOT automatically mean that one is opposed to interventions that help a person cope better and understand better.
Similarly, referring to autism as a disorder, or wishing that one's child was not as severely autistic as he or she is, does not mean one looks down on autistic people or thinks they are not really human beings, or that one wishes the child had never been born.
Living with an autistic child, especially when that child is clearly suffering a lot of distress, anger, anxiety and confusion, is not easy I am sure. Nor is living with autism yourself, but with the right support and interventions it is not the "prison" or "hell" some parents seem to believe it to be.
32 - Dean M
Noetic, the animosity is a direct result of groups like CAN or Autism Speaks refusing to let the voices of people who are autistic be heard. Half the time, when you try to point out to them that not only did we face almost the same difficulties as the children they are trying to pass off as crippled or broken, we generally had it much worse due to complete ignorance, they retreat into negationism.
In other words, when the autistic try to speak for themselves and the message is not to the curebies' liking, they attempt to negate us. I have even had one fool try to tell me I was not autistic because I could speak to them. Fortunately, I always carry around copies of certain written things by autism specialists so I can tell negationists to choke on them. But the point is that CAN and Autism Speaks are not giving anyone a voice or helping anyone. They are making life worse for not only everyone on the spectrum, but many families to boot.
33 - Dean M
Lori, if your daughter really is twelve years old, the likelihood that she was diagnosed with Asperger's Syndrome, especially with such self-injurious behaviour, at age five is not just minimal. It is practically non-existent. It even causes me to wonder whether this daughter you claim is so happily normal now even exists.
Assuming, however, that she does exist and is everything you say she is, she is just another decade or so away from turning around and asking you why you have lied about her. Real autism experts such as Professor Anthony Attwood or Doctor Isabelle Hénault have told the press on a number of occasions that the biggest issue they have with the autistic adults they often end up speaking with is anger over their parents' rejection of the fundamental basics of their character. In other words, children like the one you describe grow up to be incredibly angry and aggressive about the people who were supposed to protect them as children not allowing them to be what they really are.
My parents made that mistake, and are now paying a very heavy price not only monetarily but also in sheer emotional terms as I simply cannot and will not converse with them 95% of the time. My sister, who was vaccinated for polio and other such nasties at the exact same time as me and yet is not autistic in any sense (this is called a hint), is a complete stranger to me because nobody told them how to deal with an autistic son or brother. Please get your finger out of your ear and stop making the same mistakes my family made.
34 - Harold L Doherty
"but it never has to be anywhere near as awful as it is portrayed in these docu-melodramas."
Never is a very big word. The fact is many severely autistic children require treatment for serious self injury. Some will refuse to eat to the point that they risk self starvation. Others must be watched to ensure they do not wander into automobile traffic or otherwise go missing. These are some of the realities for some autisic children that you find offensive.
You complain about autistic voices not being heard, an old refrain from the neurodiversity camp. In doing so you ignore the voices of autistic persons who in fact are heard such as those who actually join and participate in various autism organizations. In my home province of New Brunswick in Canada I served for several years on the Board of our provincial Autism Society which included an autistic person whose voice was heard and whose organizational abilities kept us on course for several years. This past year that gentleman gave evidence before the Canadian Senate committee exploring autism treatment funding issues, along with several other autistic persons including neurodiversity icon Michelle Dawson. As for the internet autistic voices are heard often. It is time to retire this old hostile myth that autistic voices are not heard isn't it?
It would also be helpful when discussing the politics of autism if you refrained from using insulting and offensive terms like "curebie". I do not subscribe to the vaccine theory because it is unsupported by scientific evidence. But if a cure is found for autism I would seek it for my severely autistic son in a heartbeat. I would not seek to impose it on autistic persons and they are all free to retain their autistic traits. But for my son I would cure him instantly if it could be done.
All in all there is nothing new in your commentary it is just more neurodiversity hostility disguised as analysis.
Respectfully
Conor's Dad
35 - Dean M
Indeed, Harold, never is a very powerful and devastating word. Perhaps you should try using it on a teenaged autistic boy sometime in some contexts, such as telling him he will never be allowed to talk to members of the opposite sex, hold down a job, eat by his own means, and so forth. That is the kind of way "never" was used with me when I was 13 or so, and it is still a word, especially in its original Latin root, that produces some hideous reactions from me.
Considering that it took more than a quarter of a decade for my autism to be diagnosed (damn those subtle things, huh?), and then every support service in the local area at the time basically dismissed or refused to listen to my complaints, I think perhaps you ought to ask yourself who is really believing a myth here. I have sat and listened to distraught parents who have been told that their autistic sons will just end up in jail anyway, as well as autistic children who, like myself in those days, can have lies made up about them of the most outrageous kind by the other children and instantly believed by the faculty. Do you have any idea what it is like to have people constantly lie about you, be physically punished for it, and have schoolteachers tell you "anyone would think you were hard done by"? I will give you a hint: I am not the only one who he has had to relocate in order to avoid retribution from. Considering that Autism Speaks and Cure Autism Now, two terrorist organisations that autistic children are kept up at night crying about, are even allowed to exist, perhaps you ought to consider that we are not the ones who started the war.
Another thing many autistic individuals with traits in common with me find aggravating is being told how to speak. If you don't like us calling you curebies, tough doo-doo. Considering that this is a variation of neurology that often results in people speaking the plain truth as opposed to dollying it all up in pretty-speak, you should be grateful that my particular catchphrase, hissing the word "normie" in my best Michael Ironside impersonation (think of how one would sound if they wished to rip the flesh off your body while you still live and you're halfway there), has yet to catch on. What you seem to be missing is that for one thing, your son might not want or need a cure either. What if you cured him tomorrow, then found out the next week that it was not his autism but his environment that was the problem, as every autistic individual has been shouting at people like you from the get-go? You also seem to be missing the fact that if a "cure" were found, individual consent would be ignored. About the only thing the third X-Men film got right was the attempts to force their "cure" upon the mutants.
I know I do not wish to be "cured" of the ability to write thousands of words in a day. But people like CAN show every indication that they do not care. You will be cured, damn you, if you like it or not. What if the first child you cure tells you "this is what I think of your cure" and blows his brains out on television, as I plan to in such an event? What then, Harold?
Actually, Margaret's commentary is very unique in that it tries to adopt the viewpoint that all people are in fact people. When I reflected on the inhuman level of abuse that I suffered until an overload caused me to start beating up the wrong teacher shortly after being diagnosed, I knew I could never take that view. As I said in one comment on a Youtube video, you try to cure me of my autism and I will kill you. I want my autism, warts and all, complete with the massive slash marks in my forearms that resulted from idiots like you not listening.
Margaret, if I may offer a personal perspective upon these claims of unnecessary hostility on the part of the autistic, I think the phrase "do unto others as they have already done unto you" says it all.
36 - Noetic
Dean M. "Noetic, the animosity is a direct result of groups like CAN or Autism Speaks refusing to let the voices of people who are autistic be heard. Half the time, when you try to point out to them that not only did we face almost the same difficulties as the children they are trying to pass off as crippled or broken, we generally had it much worse due to complete ignorance, they retreat into negationism."
That's what I mean though - not all *parents* are like this, yet you generalise that attitude to the whole group. I have yet to actually read a statement by such a group (as opposed to certain individual bloggers who hate autism) that actually refers to autistics as crippled or broken.
Exaggerations and generalisations don't do the credibility of autism advocacy any good - in fact they put them on the same level as many believers in quack science. (Both twist and exaggerate the truth to "prove" their points - I may AGREE more with your point but I still do not see the need for such pointless and hostile overgeneralisations)
37 - Dean M
You ever hear that saying "when you side with someone, you inherit their enemies"? Well, the deafening silence of parents or educators who do not support eugenists like CAN et al makes those people stronger, and is effectively siding with them. If you seriously wish there were no parent groups trying to make us out to be cripples, then I suggest you have a good look at all the curebie videos on YouTube for starters. One second they are telling us our brains have been fried by mercury, the next they are debating us so poorly its even money as to whether they graduated high school. In effect, they try to have it both ways, and its because people like you give them that, they can keep doing this.
The scary thing is that when I am talking about the abuse and misery inflicted upon autistic children during the years I was an autistic child, I am doing the exact opposite of exaggerating. If anything, in fact, I am so severely understating things its a wonder I do not feel compelled to punch myself. And the same is true for the entire advocacy movement. If we were to take the same approach as the curebies and highlight every little negative of normalism, your television would be flooded daily with the details of child abusers being hauled into court and confessing to crimes the likes of which we thought we'd never hear about again after Nuremberg. If you want to be taken seriously as a moderator, then you had best stop trying to negate the autistic and actually listen. You want us to be warm and cuddly while morons preach genocide in a manner that is patently ridiculous yet gets accepted and protected in mainstream society? Does that not strike you as just a tad off?
38 - Michelle Dawson
It took more than two years of hard work (2003 to 2005, when I was finally allowed to testify in the previous set of hearings) to have any autistics at all allowed to testify about autism issues in front of that Senate Committee (the one referred to by Mr Doherty). The resistance against this was extreme, and it went on for a long time, and some of it is on the record.
The need to include autistics in further hearings (which turned out to be the autism hearings Mr Doherty refers to) was eventually stated in the Committee's previous report. One of my recommendations was that the Committee apologize for their actions, and they came pretty close in that previous report. The only person arguing the inclusion of autistics who is quoted in that previous report is me, though Janet Norman-Bain submitted an outstanding brief asking the Committee to consult with autistics.
I did not see FEAT, ASC (or its provincial members), et al. arguing for the inclusion of autistics in that previous set of hearings, though they had ample opportunity--and none chose an autistic to represent them. Indeed, in those previous hearings, ASC testified that autism is worse than cancer, because it does not kill us, and we continue horrifingly to live--this from a parent whose autistic son is brilliant and far more accomplished than I.
In the more recent set of hearings, the autism treatment funding hearings, autistics were deliberately banned from the major hearing in the series, the crucial round table meeting on autism research.
A list of events and/or organizations in Canada which have banned and/or continue to ban autistics in one way or another: Canadian Institutes of Health Research, Canadian Autism Intevention Research Network (banned from their organization and their conferences), Autism Society Canada, NAAR/Autism Speaks, Office for Disability Issues, Health Canada, Canadian Autism Research Workshop, etc.
The Autism Research Training program (which encompasses many Canadian autism research groups) did not involve any autistics at all until someone (not an autism society, FEAT group, or Mr Doherty) made some noise, then a few were included, then a few more. And ACT BC refused to include autistics. They had a lot of excuses. Now they have a total of one. That's better than it was before, but surely they can do better than that. ASBC still refuses to include autistics, though one ASBC board member has (he has written) tried and failed to have autistics included. Ontario's expert reference group on autism deliberately excludes autistics, and I couldn't do anything about this (I tried). And so on.
Then there was Auton, where autistics were excluded by both sides right up to the Supreme Court of Canada, and then both sides (parents and governments) opposed the participation of even one autistic. Now, Mr Doherty will say this never happened, but legal cases are pretty well documented. In fact, I have many relevant documents on my website, just like I've posted that previous Senate brief and many other efforts to have autistics included (in the CARW, in ASC, etc).
It took years (starting well before Mr Doherty's son was diagnosed) to force ASC to include any autistics at all (even as ASC has done, in a hand-picked supervised powerless ghetto, and as a tiny minority--1 of 15--on the board), and this too was a lot of (documented) work involving several autistics and our allies.
But bully for Mr Doherty for emitting another unproductive misrepresentation of the very available facts. I'm again reminded of his anti-scientific promotion of the "autism epidemic", which has the effect of denying the lives and existence of autistics.
39 - Harold L Doherty
As you know Ms. Dawson you were not the ONLY autistic person to address the Senate Committee. One of the other autistic persons to speak to the Committee was a gentleman named Jason Oldford.
Mr. Oldford was active for several years on the Board of the Autism Society New Brunswick. He was never excluded because he was autistic (Asperger's). Quite the contrary he shared his insights with the non-autistic parents on the Board. He also contributed his very considerable organizational abilities to our efforts. But Mr. Oldford did not simply assume that his voice would be rejected he came and spoke to the organization, was welcomed for his contribution, and became, as I said a very important contributor.
40 - Harold L Doherty
Dean M
You only discredit yourself by using insults to describe organizations of people trying to help their own children.
I am not trying to cure YOU Dean. I doubt anyone else is either. Those of us who are parents, seeking to cure our own children, have no desire to cure you. Nor should you have any interest in trying to prevent us from curing our children. Put bluntly it is none of your business. You do not have my son's interest at heart.
Despite what many Neurodiversity ideologues keep saying not all autistic persons write internet essays and appear before courts and Senate Committees. Whether you like it or not there are autistic persons with almost non existent communication abilities. There are also some like my son who hurts himself when he breaks windows with his hand or wanders into traffic. I have worked to ensure that an agency in NB continues to provide tertiary care services to autistic children. They work with some of the most challenging problems that SOME autistic children present including such problems as refusing to eat and literally starving themselver or physically injuring themselves.
You and Ms. Dawson are free to live your live without being cured by anyone. Don't presume to say that you know what is best for other people's children - you don't.
41 - Dean M
Harold, don't bother. You keep coming here and commenting in search of validation of your negation of the viewpoint of real people on the spectrum such as myself. You will not find it. I still have to wonder exactly what it is that terrifies you so much about the idea of autistic people being allowed to speak for themselves. We tell you our whole world is black because of people like CAN, and you want to tell us it is pink. Between hearing that people actually testified that autism is worse than cancer when I have/had both and listening to you try to tell me nobody wants to force me to be something I am not, let's just say people who know me in person are not asking me to tone it down. They are wishing people like you would stop throwing gasoline on the fire.
As I have said repeatedly here and elsewhere, trying to tell me that a cure would not be forced on me if one were to come into existence is like trying to tell Harpo Marx that the Nuremberg Laws really aren't anything to worry about. You keep rabbiting on about what you want for your son, but what are you going to say when your son is an adult and tells you he wants something else entirely? As I have already said, Professor Attwood's biggest pervasive theme noticed among today's autistic adults is anger and frustration at parents who refuse to accept that they are not normies. In another ten to twenty years time, your son is going to find out exactly what you have been wishing upon him and be very upset with you. Are you willing to come back and post apologies to everyone on the spectrum for it even though it might end up being too late? I doubt it.
And despite what curebies keep trying to tell us, autism is not, never has been, and never will be as utterly disabling as you want us all to believe. Even the lowest-functioning of children change radically when they hit that weird and wonderful climax of change we call adulthood, and there are people who actually bother to sit down and interface with the autistic who are finding there is getting to be progressively less room for your conclusions. It reminds me of an experiment I heard about in the news in which scientists were attempting to establish communication with dolphins. They said they wanted to hear what the dolphins had on their minds, even if it was "leave me alone". It is patently obvious to me, and to many people reading this article, that you have no such regard for your own son. At some point he is going to ask you to stop curing him, and I do not doubt for a second that your response will drive a wedge between you because of your ignorance of the actual situation. The ability to write, direct, program, or paint is only beyond an autistic individual when you purposefully make it that way instead of helping.
You see, Harold, you probably will not get this, but after reading your negationist dribble, I feel far more qualified to speak up for children like yours than I feel you are. Unlike you, I have not forgotten what being a child is like, and I will certainly never forget what being an autistic child was like. You are making the exact same mistakes adults around me made when I was a boy, and it is honestly enough to make me wish I could have a film crew follow you 24/7 for when you start "enjoying" the results.
42 - Michelle Dawson
The report resulting from the previous set of Senate Committee hearings I refer to is here. Maybe Mr Doherty can show me where Jason Oldford is involved (witnesses listed at the end). Mr Doherty might want to read the autism section.
As I wrote in my previous message, in the current set of hearings, autistics were deliberately banned from the most important meeting of the series.
Every other example I gave of autistics being banned can be verified. Often, there were many witnesses, as in the CARW, from which Mr Oldford was banned at a time when he was "active on the board" at Autism Society New Brunswick (an ASC member). This means that autistics were banned from the CARW with Mr Oldford's apparent approval. That is, if Mr Oldford genuinely was in a decision-making position, he was in on ASNB's ethusiastic approval of not only himself being banned, but of all autistics being banned.
It's odd that the Canadian gov't responded to my concerns not by telling me that ASC and its members fully welcome autistics in their governance, but by writing:
"ASC is governed by parents and caregivers of people with autism as most individuals with Autism Spectrum Disorder (ASD) are either minors or are people who, due to their disability, are unable to speak for themselves, nor function within the social structure of a typical organization."
The director general who wrote this in a letter to me (on behalf of the relevant federal minister) later told me that this information came from ASC.
43 - Michelle Dawson
Mr Doherty wrote:
"Despite what many Neurodiversity ideologues keep saying not all autistic persons write internet essays and appear before courts and Senate Committees."
Well, I don't write about neurodiversity, but I see it a lot. I've seen a lot of different human brains, their structure and function. Mr Doherty calls this human diversity an ideology, which presumably would disappear if only those misguided and malicious "neurodiversity ideologues" would go away. I would not agree with Mr Doherty in this regard.
I would also like to know who has said that "all autistic persons write internet essays and appear before courts and Senate Committees" of for that matter, that all non-autistics do this. And how does this have anything to do with what basic human rights a person (autistic or non-autistic) should have, or the standards of science, ethics and advocacy they deserve. Not everyone (self included) can do what Mr Doherty's totally cool autistic son can do without being taught. Does this mean Mr Doherty's son should be disregarded, as "too high functioning"--because he has excellent specific skills--to have anything to do with "autism reality"?
Mr Doherty wrote:
"You and Ms. Dawson are free to live your live without being cured by anyone."
Well, no. I do not want to break this to Mr Doherty, but autistics live the consequences of the public discourse about autism. We live the consequences of "autism advocacy". We live the consequences of motions, laws, legal and political actions. We also live the consequences of defamation, of accusations from eminent "autism advocates" that we are dangerous frauds and criminals. We also might care about what happens to other people. Yes, I know that is not allowed in Mr Doherty's world. But I'm afraid I disagree with Mr Doherty here also.
Mr Doherty wrote,
"Don't presume to say that you know what is best for other people's children - you don't."
I write formally and informally in the areas of science and ethics (both science and ethics are recognized disciplines, like law), as well as about the science and ethics of "autism advocacy". This work can and should be criticized on its merits, but so far Mr Doherty has not chosen to do this. I'm also aware that Mr Doherty does not accept that autistics deserve recognized standards of science, ethics, and advocacy. And while I'm afraid I disagree with Mr Doherty about this, he is of course free to ignore me. Nobody is trying to cure Mr Doherty.
44 - Dean M
Why bother, Michelle? Curebies like this want to urinate on us and tell us it is raining, then go crying to others when we react in a hostile fashion. The Nazis did the exact same kind of thing in the 1930s, selling their inhuman persecutions of dissenters and fringe groups as a response to some perceived threat. That is the real reason CAN will not allow autistic adults to speak for themselves: seeing what real autistic people have to say ruins the credibility of their "plague of the twenty-first century" message.
If ever there were people who exemplified the reason why the autistic are imagining breaking away to form a society of their own...
45 - Rossco
The problem that I see is that we all use abstract concepts to define a position that my not apply to what another person or group believes.
Examples of this are: what is neglect, when is acceptance ok, what ought to be accepted, what is "natural" development as opposed to enhanced development, what is good parenting.
To confuse issues, putting these concepts into working situations is more problematic. I want the best for my autistic child. I do want to see him happy and secure in life. I do want to put in place strategies to assist him in this way.
At what point do I become interferring or neglectful? It is a perspective. I think I make pretty good choices and I can live with them
I try not to be judgemental about this process with others.
One thing I believe though is that in these tentative stages of increasing public awareness, we do have to be vigilant and all oppose ALL of those that will demonise or dehumanise autistics. The endorsement or ignoring of such acts will only serve to harm my child (and all other autistic children) in future years because the public will base their views on autism based on what is filtered to them.
If a psychotic autistic person commits murder, why did they do it. Is it because they are autistic (neurologically different) or because they are psychotic (mentally ill)? If you support media who persue it is because of their autism (perhaps in the mistaken believe that any identiofication of autism is good and could be used constructively) you have helped in the demonisation of people like myself and my boy.
If you attach yourself (even loosely) to any group that supports JRC, you are supporting a centre that dehumanises autistics and any positive publicity that supports their practices.
I am 36. I was lucky in many ways that autism diagnosis wasn't around when I was longer. I was 30 until my dianosis was corrected from retardation to HFA. My son though I worry about.
He will be growing up in a time where the public will "make up their minds" on the autism debate. Menaces, unpredictable psychos, retards, animals...or perhaps people who struggle to meet challenges and changes but have potential to be a success in their own rights, worthy of acceptance and understanding in society....up to all of us.
We just have to be careful and caring. I am.
46 - Les
It seems that not many people know that early childhood schizophrenia as a diagnosis has been removed from the DSM IV and children with this disorder are now called autistics. I believe that psychiatrists and pharmaceuticals leaders, and changed the name of childhood schizophrenia to autism to create confusion. With the tremendous increase in the average paternal age since 1980 childhood schizophrenia was expected to increase significantly. So that is what we see today. The austism charities are run by and for people who know all about this and exist to raise money for useless scientific research that lines the pockets of researchers, research institutions, pharmaceutical companies and psychiatrists etc. It is a scam. The risk factors of advancing paternal age 33 and over, a family history of autoimmune disorders, an older maternal grandfather at the mother's birth are not announced and genes are collected only for the benefit of genetic research companies.
People need to wake up and those who are young cryobank their sperm in their mid 20s. Older men past the age of 33 should not father babies unless they have a supreme family history and should adopt instead.
Paternal age at conception is a robust risk factor for schizophrenia. Possible mechanisms include de novo point mutations or defective epigenetic regulation of paternal genes. The predisposing genetic events appear to occur probabilistically (stochastically) in proportion to advancing paternal age, but might also be induced by toxic exposures, nutritional deficiencies, suboptimal DNA repair enzymes, or other factors that influence the fidelity of genetic information in the constantly replicating male germ line. We propose that de novo genetic alterations in the paternal germ line cause an independent and common variant of schizophrenia.
Seminal findings
We initially examined the relationship between paternal age and the risk for schizophrenia because it is well established that paternal age is the major source of de novo mutations in the human population, and most schizophrenia cases have no family history of psychosis. In 2001, we demonstrated a monotonic increase in the risk of schizophrenia as paternal age advanced in the rich database of the Jerusalem Perinatal Cohort. Compared with the offspring of fathers aged 20-24 years, in well-controlled analyses, each decade of paternal age multiplied the risk for schizophrenia by 1.4 (95 percent confidence interval: 1.2-1.7), so that the relative risk (RR) for offspring of fathers aged 45+ was 3.0 (1.6-5.5), with 1/46 of these offspring developing schizophrenia. There were no comparable maternal age effects (Malaspina et al., 2001).
"It makes sense that the mutations causing these diseases would occur more frequently in older men, and indeed that's what we saw for Apert syndrome," says Ethylin Jabs, M.D., director of the Center for Craniofacial Development and Disorders at Johns Hopkins. Science Daily
Importantly, disorders linked to advancing paternal age begin to increase rapidly at about the same time as maternal risks increase -- age 33 to 35. Until now, the only evidence for paternal age effects has come from determining how many children with these diseases are born to fathers of various ages.
47 - Zaecus
"Older men past the age of 33 should not father babies unless they have a supreme family history"
I have a supreme family history; a wide range of autistic expression from all over the spectrum on both sides of the family.
I intend to have multiple children and to encourage them to do the same.
Hopefully, we'll outnumber those like you eventually, and those of us who think diversity is a good thing and differences add value can get down to sharing the world as equals.
48 - Lucas McCarty
I'll wait til 33 to get married and like Zaecus above, try to father as many children as possible. Failing that, I become the world's most prolific sperm donor. Or I could do both. Sounds reasonable.
49 - Dean M
It must be really hard work being that ignorant, Les.
For one thing, autism and schizophrenia are about as alike as chalk and cheese. Schizophrenia has an onset that generally occurs in the late teens, although obviously the mental illnesses that autism is not do not read textbooks. What the curebie quacks consistently miss when trying to pretend that autism somehow reduces one's quality of life (as opposed to abuse from parents, teachers, doctors, and so on) is that autism is present from birth, much like dark skin or green eyes.
I used to wonder why curebies are so afraid of the proliferation of autistic adults who have been diagnosed only very recently. Then it hit me like a bullet. They fear us because our existence, the fact that we have lived to adulthood in spite of terrible abuse and denial of one of our most basic human rights, demonstrates that autism is not as crippling or disabling as they would like their sponsors to believe. If anything, to be perfectly frank, it demonstrates that we are far stronger, far more resilient, dare I even say far more hardcore, than they will ever be. What kind of people would you want running the world of the future? People who have demonstrated they can take more abuse than most people can stand? Or people who cry "waaaah pity me me me, my child is *different*?". Hell, I am even acquainted with a veteran who has shrapnel in his face, and he happens to be autistic, too.
(By the way, I hope someone working for the Canadian government can read this, because I used to think of Canada as a progressive, enlightened nation. After hearing about how it treats its autistic citizens, I fear it is in danger of becoming the next Nazi Germany.)
The renaming argument is really incredibly pathetic when you think about it. It reminds me of the spurious claim one moron I will not glorify by mentioning here made that autism did not exist before 1947 because that is when Leo Kanner first wrote of it. Antoine Lavoisier identified silicon first in 1787. Does that mean silicon, the second most abundant element on our planet, did not exist before 1787? Names might have power, but only so much of it.
50 - Nikad
I assume most of the above posters live in ¨First World¨ countries. I live in Argentina and I´m the mother of a 12 yo aspie. I don´t think my son is disabled ( although I got a disability certificate for him just to be able to get economical help for therapists, schooling, etc ).
Since this certificate is renewable, I will not renew it after he turns 18. I do not think he is disabled, but the system is perverse and makes it economically difficult to insert an aspie kid in schools, etc.
If his brain was damaged by a vaccine,etc and there is a cure, I will do what it takes to provide it to him since it is my responsability as a parent to take care of both his mental and physical health, however if his AS is a part of his personality I will not ever want to change him!
In my opinion, wether a person has a mild or severe disablity and you treat them as disabled, they will grow up weak and fearful. Now the question we should ask ourselves is: What is in reality a disability? Some of the physical ones are obvious, but what about for example the now so fashionable Anxiety Disorder? or Atention Deficit Disorder, Clinical depression, ocd, bipolar disorder, autism, AS. How disabling is depression or anxiety? I have met people who couldn´t keep a job becasue of this, and I have NEVER heard any of them were excluded from panels, associations, politics, etc and treated like alien!
If the fact that somebody flips his arms, or has a weird tone when talking, or is very straightforward is a VALID reason to exclude his thoughts, feelings, opinions, etc then we as NTs deserve to be insulted and treated like hipocrits!
I have met MANY NTs that are not autistic and do not like to interact with other people, they only do it if they have to, so what is the difference? If you choose not to be social then it is fine, now if you have trouble socializing then you are a disease???
What about all the scientific research that concludes that people with autism develop as they grow up? Is it a lie? How do you measure development? Why are so many organizations stigmatizing people that have been labelled?
I was happy to know what was different with my son, we both felt relieved, we discovered together what was the way to go, how to understand each other, etc, now why am I getting the feeling that the diagnosis is in fact a CURSE?
Also, each an every person is different, so why put everobody in the same bag? To me, any organization that advocates for the rights of people with autism and has just NTs governing it, is a BIG LIE.
Maybe the intentions were good, but somehow you missed the point... Now who dares to tell so many adults that are being diagnosed that in fact they cannot think or do anything for themselves? That they cannot raise kids or have families, jobs and carrers when they have already proved they CAN DO IT?
nikad
( Veronica S. )
51 - James
I'm with Dean, at least up to a point. I have Asperger's Syndrome, was first diagnosed at age seven and recently had my diagnosis confirmed with a battery of tests arranged by the university where I am currently taking a Creative Writing course; whether my AS and a love of reading and writing (which I'm told I'm good enough at to make a fair bit of money out of it) are causally related is a matter for conjecture, but it certainly doesn't hurt.
Now, can someone please define the term 'cure' for me? If it means giving people with autistic spectrum disorders the means to graduate from high school and eventually college if they so desire, live independently and become productive members of society, Dean seems to have cured himself. I underwent successful treatment that took the form of speech and occupational therapy by an excellent Special Educational Needs programme throughout my education and the less structured but equally efficient tactics of a patient and understanding mother; I even got over my problem with maintaining eye contact, though I've never completely mastered my stammer. I am forgetful, socially awkward (though I'm getting better at this) and generally something of a geek, but there are worse things for one's son to grow into.
But if could give the parent of a child with autism only one piece of advice, it would be this: You must deal with your child as they are, not how you would wish them to be. They'll never really be 'normal', whatever the hell that is, so all you can do is help them learn to work with ans compensate for it, and even make their autism work to their advantage.
52 - Ms. Missy Link
Not tring to convert anyone but here is a story of what can go wrong in the journey to med the symtoms of autism.
53 - earthmonkey
Sometimes people tell me I'm too high-functioning to speak on autistic rights because I am diagnosed Asperger's and so didn't have a speech dely. They see my national writing award, my grasp of calculus by age 10 and of abstract algebra, number theory, and topology by age 16 (self-taught entirely from books, as my parents can barely do basic algebra), and people tell me I have no right to speak for so-called lower functioning people.
Let me describe my experience with someone I know who does not match this profile of a gifted autistic. When she was in fifth grade, she could not figure out how to ask her teacher for a pencil when hers was lost. She spent her time in classrooms staring off into space, participating in the schoolwork maybe 10% of the time if that, from elementary through eighth grade. Teachers would approach her, wave hands in front of her eyes, call her name, even shout it, would threaten disciplinary action, but she still would not respond to them. She always ate alone in the cafeteria, staring off into space as the kids around her made fun of her as she rocked back and forth and never said a word the whole day through. At home, her mother was at a loss. She had to plead with her daughter for hours on end to do her homework, but she would spend those hours creating absolute havoc in the house, always fighting with her siblings, refusing to be touched, self-injuring by hitting her head. She wasn't fully toilet trained until age 11.
This girl was me. And while most autistics aren't math prodigies (how many non-autistics are math prodigies?), that doesn't mean there isn't chance for significant growth and potential. While it is impossible to make a post-mortem (did I spell correctly) diagnosis, you might have read about speculation that Einstein had Asperger's. But Einstein didn't speak until he was four. The diagnosis, if on the autism spectrum, would have been Kanner's "classic" autism.
I have some friends now, but I didn't until I started attending this school, which is an art school for high-school aged students, and the students are very accepting of other people's differences, which is the only reason I believe that my stimming, perseverating, meltdowny ways are accepted as another part of who I am, and I am happy for one of the few times in my life.
When it is a day that talking hurts, I write down my messages of communication to my friends via an alphasmart the school provided me. It is far quicker than writing by hand, which takes me forever (my elementary school teachers loved my handwriting, but it took me forever to write and left my hands very sore to write even one simple sentence (such as "The dog chased the cat.")) While some of my friends like to hug me at times, they know to ask permission. One thing about physical contact is that even when I'd be okay with it, if I am not aware ahead of time that it is going to occur, then it will leave me jumping away, shouting.
One thing that should be noted is that I never underwent any sort of therapy, either by drugs or counseling. What I see is that if this sort of natural development can occur for a teenager autistic is that for people who would need more help, I see a positive program of therapy do wonders for improving the adaptive abilities of children (did I mention that whenever my mother moved the furniture around for no reason other than to change how things looked that I would have tantrums? In retrospect, we should have combined a) her moving the furniture around less often, as in only when necessary, and b) teaching me that it's not the end of the world when things change, possibly by drawing a rudimentary map of what it looked like before and what it's going to look like after).
While I am staunchly opposed to the finding of a "cure," I write this understanding that 1) very few autistics are child prodigies (just as very few neurotypicals are), 2) many therapies CAN help people adapt to the neurotypical world and still retain their autistic identity (i.e. you can teach a child to speak - or otherwise communicate - and he or she is still just as autistic) 3) that chelation and related techniques of trying to help children CAN kill and cause other side effects (while there aren't many deaths in association with chelation - I only remember reading about one or two - autism is not life-threatening, and quality of life can be greatly improved for autistics, even those without speech and those who are considered mentally retarded, by therapy such as occupational therapy and another I'm forgetting the name of - it's not ABA, that's more the stimulus-response, stimulus-response type of stuff I have seen damage the functionality and self-image of many autistics (often, so much effort is spent trying to train neurotypical behaviors that the child has difficulty accomodating his or her autistic behaviors to the outside world, and the study which actually compared the ABA-trained kids to a control group showed no statistically meaningful difference between the two groups - and I understand statistics, I took a statistics course at college in the summer between tenth and eleventh grade, one year ago.
I've been depressed very often since I was young, due to the awful way that my sister and my peers abused me verbally and physically. When I was in seventh grade I was assaulted each day, knocked unconscious more than a few times, sustained injuries that landed me in an ambulance during the school day, which we were completely unable to afford, and when I reported all this, my counselor told me that I had to expect such treatment since I didn't look or act "normal" (referring to my rocking, the fact that I spent all day writing mathematical proofs instead of doing worksheets that simply reiterated the lecture - I understand if it's useful for other students who need more help to remember to do it, but why penalize me when I ace the tests without even showing up for class? - and how I stayed at the library instead of trying to socialize with my peers, 90% of whom either actively assaulted me or stood back and watched with grins) and this was how she justified not punishing them. i told her I didn't ask to be well-liked, I didn't even ask her to prevent the kids from making fun of me, which would be impossible to control. I just asked that she uphold her legal duty to provide a safe learning environment, and when i finally was pressing to get the police involved after she refused to act on an attempted rape, she managed to convince me that it would be pointless to put me and my family through all that, especially since no one would believe an autistic girl crying rape anyway. What did I know? This was exactly the same runaround I'd faced ever since I'd been going to school when the boys would attack me in kindergarten, why should I think the police and the law would be any different? I stayed at that school a whole year after that, and while I managed (just barely, as I had to appeal to the same counselor) to get transferred out of a science class with the boy who'd done all that to me just months earlier before the summer break, I couldn't get out of history with him, and history class was the class where they show the sexual harrassment videos. I wanted to die, and he kept giving me these dirty looks, just like the ones he gave when the year before he'd said: "Justice has been served - to US!"
While this may seem like an extreme case, it is all too common. It may be more thickly veiled than "well, you're different, so you're not entitled to safety", It happens in many different ways. Sometimes, the counselor says, "the kid is exaggerating things" or "Being bullied helps build character" - maybe the person who says the latter is thinking back to being teased, and most certainly not to being beaten daily, usually so unfairly as five against one, certainly not to being unable to go out in the city without running into some of those bullies, or even without leaving home, some of the bullied who lived in the same mobile home complex vandalized the family car.
Oh, and another comment: the reason autism was frequently diagnosed as childhood schizophrenia in this century is that some of the earlier schizophrenia (formerly known as dementia praecox, or "precocious dementia", as it was viewed as the dementia that occurs in old age, except that it occured at a younger age, usually between 15 - 25 for maled but with somewhat later average onset for females) studies used the word autism (which, of course, is from latin) to describe specific negative symptoms of schizophrenia. Later, when Kanner did his studies of "classic" autism, he applied the same word, autism, but under a different context. Later on, in this century, this caused confusion between autism and schizophrenia. Since schizophrenia is extremely rarely occuring in childhood, and since autism is always in childhood (among the other stages of life, such as adolescence and adulthood), then this in combination with the confusion of terminology led to the inaccurate diagnosis of childhood schizophrenia. It is not that children with childhood schizophrenia are now called autistics instead (there are in fact children who are schizophrenic, and this is early-onset schizophrenia), but it is that autistics were mislabeled as having childhood schizophrenia and now are recognized as being autistic.
Please, Les, consult psychology (or history thereof) texts prior to claiming that autism really is childhood schizophrenia renamed. Perhaps you should learn from us autistics and perseverate before you (try to) elucidate. (I did.)
54 - NBBFan1
Autism is not alway's severe; the different types of autism - moderate autism/PDD-NOS (Miled), Severe Autism (Classic Autism), and Aspergers Syndrome.
Do to the scientific studies 30-years-ago, some people still think it's life long.
Through "Early Childhood Intervention" programs kids could gain self-care and social skills where as with severe autism that is unlikely.
there's multiple of them such as -
Applied Behavior Analysis (ABA), Sunshine and more.
But they will alway's be on a autistic spectrum.
Most of which get Aspergers Syndrome (AS) (High Functioning Autism).
55 - Supefreak
It should be noted that even though there is substantial proven evidence of special diets ,vitamins, as as as treatments for gastrointestinal treatments she believes in absolutely none of it.
She is laughed at often on the autism boards for her stubborn view that autism SHOULD NOT BE TREATED and she should be placed in jail for neglecting her children for the same. There are proven remedies for even complete recovery of autism yet she will not even discuss or want to believe thousands have recovered through other means. Traditional medicine DOES NOT have any treatment for autism even though even ABA and speech therapy are proven. She even opposes those. In other words she would rather her children and yours to never reach their potential.
Go over the autismspeaks and look at her post. Look at how much time she spends arguing EVERYONE on any treastment for autism.
Very sad person.
56 - Margaret Romao Toigo
Supefreak, I have never asserted that autism should not be treated, only that it should not be treated with quackery.
There really is no such thing as "alternative medicine" -- that's just an euphemism for quackery.
57 - Evan
i have autism and i overcame my autism but not completely and drinking and smoking could cause me to loose my progress