How Should We Present the Autism Spectrum to the Public?

The autism community seems to be searching for the “perfect” description of itself. It is such a complex and complicated disorder that I believe no such description exists. I fear that in our desire for the perfect message we instead send no message. Any attempt to describe this condition to the masses is met with criticism from with the autism community and confusion because of the criticism outside of the community.

We need to stop this bickering internally, and get behind a message, any message about autism. We need to understand that this will never be THE message but a first step that will start the conversation. Then the message can be broadened to included more and more about the different types of autism.

When Jerry Lewis started his work with Muscular Dystrophy nobody knew that much about it, but over many years he slowly educated us. Yeah, there was some really embarassing pity shots but over time the more noble message got out. The autism community needs to follow this model of many messages and descriptions to explain this disorder to those that don’t live it.

One message is not going to make or break the general public’s perception of us but a campaign of many different messages will. If we keep looking for the “perfect” message we will never create that first or second or third message out of one hundred or a thousand.

I am an adult endowed with Asperger’s.
Probably the biggest mistake the Autism community is doing right now is asking for a cure. This implies there is one cause of autism, when in fact there are many causes, many of them genetic (and possibly only cured genetically or by invasive fetal intervention) and many caused by in-utero trauma (viral, umbilical problems, low birth weight, fevers, pharmaceuticals, alcohol and common foods we naïvely eat without knowing they cause defects.)
So we should be asking for cureS. We should be researching the numerous true causes. We should be educating on preventing birth defects. We should be vaccinating to prevent viruses which can cause birth defects. Change it to cureS, plural and you get my support.
And I must add, some of us Aspie’s do not share some people’s empathetic supposition that we want or need to be cured, though I understand respect the motive of some parents; I certainly have enough problems with one of my sons.

Attempting to speak about “autisms” is nothing but a cop out to avoid speaking out about it as a huge epidemic that is affecting 1 out of every 58 boys now in this country. It makes NO idfference what end of the spectrum the person is on. The fact is that the majority of these kids don’t get their needs met, there are now so many that it’s making help for them more difficult and pretty soon they will overwhelm our social security system. The majority of those even with aspergers cannot hold down a job so I don’t think the spectrum is as big as you do. If you stop talking about “autisms” we might be able to get more accomplished and concentrate on stopping this epidemic once and for all.

Jerry Lewis is the last person in the world that we want to emulate in getting any message out. Respect for the person with autism must be the basis of any message that is put forth.

Joe

Maurine, which data indicate that autism is an epidemic?

To Autism News Beat
1 in 91 children in the states and 1 in 58 boys. If that’s not an ep[idemic, then I cannot imagine what an epidemic is.

ANB
perhaps 1 in 60 (1 in 38 boys) that we have in the UK is more your cup of tea???.

what would you consider an epidemic ?
1 in 6 (children with educational special needs)
1 in 10 (ashma)
peanut allergy??

whats the magic number ANB and who needs to peer review it for you to accept it??

Personally, I think what really confuses the public more than anything else is a lot of foreign terminology. “What’s an Asperger?” “Neurodiversity??? What’s that???” “What’s a pervasive development thingy?” “Cognitive-social what, now?” Ideally, we should be starting with words and phrases that we know people understand, and only introduce terminology gradually, and as desperately needed.

I am a 38-year-old female with Asperger’s syndrome and a mother of two sons with Asperger’s.

I always knew I was ‘different’ but it took me years to finally receive an official diagnosis (in 2006) of Asperger’s and it has helped me a lot to understand myself and understand, why I’ve had so many problems with other people before (although I also had amazing friends who helped, accepted and supported me even before I knew that I was autistic).

I’ve had some really horrific things happen in my life but mostly I was lucky. And my life has definitely improved so much after the diagnosis and my career has blossomed which helps me to help my own children – I know exactly how to help them realise their full potential and support them in their difficulties (because I’ve learnt the hard way and can protect them from experiencing the worst).

Do I want to be ‘cured’? Even if it was possible, no.
Do I suffer because of autism? No.

I’ve had dietary problems and depression and OCD can be bad sometimes but that’s not caused by autism (although it often happens together – those are all separate conditions).

I do not believe that majority of people on the autistic spectrum are male – I believe that most Aspie women are socialised to mask their ‘difference’ like I was and manage to ‘act normal’ and fit in.

The only reason I got diagnosed was because of a crisi situation which was partly caused by racist attitudes ot some people I trusted (in Britain, it is not uncommon to hate people with a foreign accent – it’s not longer dependent on someone’s skin colour – some racist white British people hate anyone foreign which is wrong, of course, but that often results in abuses being covered up by the very people who DO NOTHING if the victim is foreign. And being autistic didn’t help, of course as bein ‘different’ only makes it more likely to be rejected).

So I was diagnosed almost by accident.
But many white British women with Asperger’s remain undiagnosed because GPs and health workers do not recognise the symptoms of AS and often don’t want to believe it, instead accusing women like that of being ‘Drama queens’ or even ‘delusional’.

Ignorance is a number one cause of suffering of autistic people. And sometimes I feel that it’s the non-autistic people who choose to abuse power and push about the vulnerable in society who need the ‘cure’ or at the very least treatment and education.

Actually, I’m quite good at many things and I want to be useful to society. I am also very fair – I value justice and compassion above all else, above money and power and society could do with more people like us engaging in society.

I’m not saying that all autistic people are ‘better’ than non-autistic. I’m saying that some qualities of autistic people can be very useful to society as a whole and accepting and supporting someone who is maybe a little naive and ‘different’ will go a long way to helping us belong and positively contribute instead of hiding away from the hurtful world and finding solace in our obsessions.

As much as I love the company of my children and my animals, I’d still like to be a part of a larger world and I can do so much more than I am already doing. If only I could feel safer and not worry about being physically attacked, again, for my lack of firm eye contact and speaking with a slight European accent. Makes me feel like a leper when people react with hostility so I don’t ever speak in public at all. Even though I’ve stopped being non-verbal when I was 14.

How are you defining “epidemic”? Feel free to consult a dictionary.

ANB ~ Take your pick. I prefer number 1 myself.
Oh, and btw, this FROM a dictionary. Miriam Webster, ever heard of it?

1 : affecting or tending to affect a disproportionately large number of individuals within a population, community, or region at the same time

2 a : excessively prevalent

3 : of, relating to, or constituting an epidemic

Lisa – to answer your question – YES!! Of course the public is confused when autism is presented as a monolithic disorder – because “the public” doesn’t have the years of experience we do.

As parents, we have seen over the years the vast differences in these children that are all being lumped into the “autism” category.

As educators, we have watched administrations attempt to teach these children in a singular way, regardless of their individual learning styles.

As researchers, we have discovered that there are multiple pathways that can lead to this diagnosis we call “autism”.

As healers, we have used our childrens’ test results to treat the medical conditions they suffer from. And as we treat our kids’ medical conditions, we watch their symptoms of “autism” lessen.

So let’s stop confusing the public, and instead educate them about the fact that the term “autism” has been a total COPOUT by the mainstream medical establishment.

While there are surely many higher-functioning “autistic” folks who are perfectly content within themselves, I feel there are infinitely more “autistic” individuals who are screaming within the confines of their injuries to be freed.

Sadly, the medical establishment cannot even take the first step toward healing these children, because by doing so, it would be forced to admit that the damage to most of these children was it’s own doing.

I pick number two. It’s very close to the medical definition of epidemic:

An epidemic affects more than the expected number of cases of disease occurring in a community or region during a given period of time.

In order to call something an epidemic, we need to compare two different rates over time. That calls for data, which goes to my original question: what date suggest an epidemic? Generation Rescue claimed for several years that that rate has increased from 1:10,000 in 1983, to 1:150. This is misleading to say the least. The best estimate for autism in the early 80s was 4:10,000, and that was for DSM III autistic disorder. There was no autism spectrum in 1983, no PDD-NOS, no Asperger’s. The best estimate for autistic disorder in 2009 is 20:10,000.

But that’s an apples and oranges comparison, since the DSM IV (R) criteria for autistic disorder is less restrictive today than in 1983.

ABN:
“In order to call something an epidemic, we need to compare two different rates over time. That calls for data, which goes to my original question: what date suggest an epidemic? Generation Rescue claimed for several years that that rate has increased from 1:10,000 in 1983, to 1:150″
Don’t blame Generation Rescue. The CDC, part of your government, were the people who came out with the 1:150 several years ago.
Since they are refering to school aged children, that would mean a lot more children from birth to 18 have ASDs than have had the swine flu which the same CDC is calling a panedmic.

What we should tell people about autism is the truth.

The spectrum concept itself presents difficulties in speaking truthfully about autism disorders because some with Aspergers Disorder and higher functioning autism do not like to be identified with the realities faced by those who are more severely affected by Autistic Disorder. A handful of the more fortunate even go out and protest when an organization like Autism Speaks organizes a benefit to help autistic children. And they organize to prevent videos offering depictions of severe autism realities from being shown to the world.

We should tell the truth. And we should make it clear that for every Bill there is someone like my 13 year old son who will live his life in the care of others and for whom his Autistic Disorder is not an “endowment”.

All Spectrums should be under one heading
NSD Neurogical Spectrum Disorders.
One Group of for example which uses an Umbrela term
is FASD Foetal alcohol Spectrum Disorders, Which includes FAS , ADHD , ARND , Autism , Aspurger’s
etc, etc ,
FASD Groups have too work together for all In Education,Interventions,Research,and Diagnosis
and have too be non Judgmental in all areas.
New research is progressing which will benifit all
Spectrum Groups. In Early Interventions and Education, Stratergy’s have too work for all spectrums. See www,fasaware.co.uk as proved working togeather is the only waqy forword

My hats off to you, Harold!

Very well said, thank you!

Hey Club 166,

When was the last time you raised over 1 billion dollars for Md research? Sure he may not be the best spokesman for MD but atleast he tried and better yet he did it.

Clarence says:
“All Spectrums should be under one heading”.
Based on that logic, all respiratory disorders should be under one heading. Then the common cold and the flu would be considered the same as pneumonia, emphysema and lung cancer.

Or lumping all visual impairments under one heading. That way someone who needs reading glasses or wears contacts for astigmatism would be considered the same as someone who is totally blind.

I think we need to wake the public up to the numbers and what they represent. Regardless of what officials say about better diagnosing–no real increase, no one has ever been able to show us a significant autism population among adults. There are more and more stories in the press about the growing need for adult services. The governor of PA recently announced the results of the first-ever state autism census. The findings are frightening.

In 2005, more than 1,400 Pennsylvania adults were living with autism – just over seven percent of the total autism population in the state.
That number is expected to increase by 179 percent to more than 3,800 in 2010 and to more than 10,000 by 2015.”
At a press conference held by the CA Senate Select Committee on Autism in April, 2009, one speaker gave us the mind-boggling CA autism numbers, saying that there were “14,000 students with autism a decade ago.” Then he added the increase, “46,000 students today, and growing.” Rick Rollens of the MIND INSTITUTE at UC-Davis announced, “Eight-four percent of the autism population is under the age of 21.” http://www.ageofautism.com/2009/05/on-media-pay-no-attention-to-that-tsunami.HTML

Here are the 2008 US Department of Education autism figures:
https://www.ideadata.org/PartBChildCount.asp

Age 6 to 11 161,121

Age 12 to 17 112,913

Age 18 to 21 18,604

Within the next couple of years, these kids will start to overwhelm social services and welfare funds. Five years from now, I can guarantee that we’ll be able to find lots of adults with autism. Problem is, they’ll be young adults in their 20s and they’ll have no place to go.

Anne Dachel Media editor: Age of Autism

Harold,
I would have to disagree with you.
For every Bill there are 10 people like your 13 year old son who will live his life in the care of others and for whom his Autistic Disorder is not an “endowment”.

A different intelligence that simply does not fit into society as is, each of us different on the spectrum just like those that are not, each with differing strengths and weaknesses, but our biggest battle continues to be with a society that only allows conformist and for me to conform would be to lose part of self [Aspergers Parallel Planet]

Mr. W, I’m blaming Generation Rescue for throwing out misleading data. There are no studies showing a 1:10,000 rate in 1983. Again, the best estimate is 4:10,000 for DSM III autistic disorder, which is what was counted as autism in the early 1980s. The CDC’s current estimate of 1:100 is for a spectrum of PDDs that didn’t exist in 1983.

I just don’t know that it’s possible to properly present the wide spectrum of ANY complex medical condition to the public in the short time that they are willing to give to issues that do not directly impact their own lives. Do I understand the reasons why some within the autism community might feel this issue is important? Yes, absolutely. That being said, when basic needs like insurance coverage and services for adults living with severe autism are not currently being met, I think the community has bigger issues to tackle right now. The public is easily confused, distracted and gets overwhelmed when asked for too much at one time. A narrowly focused message will be far more effective in getting them to aid the community in getting basic needs.

As time goes on, the message can shift to allow for greater education about the wide variety of ability levels within the spectrum. Changing perceptions is a issue of social consciousness that takes a very long time to achieve and could very well be a generational thing. The level of awareness about autism now is just the start and it will take a long time for the population at large to come to grips with what autism is and what it means. There’s also the very real possibility that the diagnostic labels for various types of disorders will change or be reconfigured as more research is done. There’s so much we don’t yet know and, if those within the community are struggling with the questions, how can we expect the public to understand? That doesn’t mean that we do nothing, it just means that right now we are better off giving the public a simple message with simple requests.

Jeff – what simple message would you craft to present autism to the general community?

That is why it is called a Spectrum Disorder

Each and every individual with autism certainly does not experience each symptom with the same severity. Different people with autism can have very different presenting symptoms. Health care providers think of autism as a “spectrum” disorder, a group of disorders with similar features. Within each of the key diagnostic categories, i.e., communication, social or behavioral, one person may have mild symptoms one of the groups, while another may have serious symptoms. But they both have an autism spectrum disorder.

In general, high functioning consumers with autism (e.g., Asperger’s syndrome) are generally less likely than low or mid functioning consumers to require or seek placement in a residential program if their primary deficits tend to be more in the realm of social development and not in the management of day to day activities in the home or community. For the most part, it is consumers with autism in the low to mid-range of functioning that will be the prime candidates for enrollment in a residential facility or group home.

These consumers, especially those that would be considered mid-range on the autism spectrum, can show considerable variation in the strengths and competencies they possess and the challenges they face. Besides social deficits, these consumers will, to varying degrees, be limited in their ability to engage in the activities of daily living (ADLs). Likewise, there will be delays in language development and cognitive ability. There will be inconsistent patterns of intellectual functioning and marked restriction of interests. Consumers may over or under-react to stimuli in their environment and may engage in repetitive, ritualistic behaviors. Consumers at the lower range of the spectrum will manifest a greater range and intensity of these complex conditions than mid-range consumers.
A subset of consumers may demonstrate self-injurious or aggressive behaviors or be prone to running away or other forms of elopement.

Some individuals are referred to as high functioning in regard to certain symptoms, some are referred to as functioning in the mid-range of the spectrum, and some are considered to be low functioning, or on the low end of the spectrum.

For example, one individual may be unable to speak a single word what so ever, can handle his hygiene issues independently, and may never demonstrate aggression to others or never harm himself. But they may hear the sound of a vacuum cleaner or a power tool and the sound may terrify them to such an extent, that they may fall backwards on the floor or they may run away suddenly in situations that they might get lost in.

Someone else may be able to speak, but presents with such severe self stimulatory behavior and little awareness of her surroundings, that she may be a danger to herself by unknowingly walking into traffic without looking both ways first.

Someone else may be able to learn the skills to do a job, but his socialization skills are extremely poor, and occasionally “out of the blue”, when needing to stand in a line, his frustration level may suddenly increase, and he loses impulse control and without provocation, he bites the person who is standing in front of him in line.

With all due respect, there needs to exist a certain level of conformity or complete and utter chaos takes over causing the inevitable demise of an entire planet and existance. Which is the very reason law and order exists today. It was born of necessity.

There also needs to exist a certain level of independent individuals or we inevitably experience the same deterioration in society causing it to eventually become non-existant. From my expereince and knowledge, as much as 85% of individuals with an ASD, including Aspergers, are not completely independent and depend on some level of support and care. At the current rate, the ratio of independent individuals to non-independent will become imblanced in the very near future. Then what?

Additionally, let us not forget all of the other disorders and disabilites that will also factor in.

I think we are not conveying our message loudly enough nor forcefully enough. Very soon it will become too little too late.

The key to presenting the Autism Spectrum to the public is the message that Autism is not a disease but a “condition.” Often characterized by a failure to bond, lack of social interaction with others, avoidance of eye-to-eye contact, difficulties in language development and repetitive behaviors. Milder forms of autism are known as Asperger’s Syndrome, Pervasive Developmental Disorder and ADD/ADHD. Together they are known as Autism Spectrum Disorder (ASD).

Autism is treatable. People who have autism can improve significantly with appropriate intervention. the best approach to treatment is a multi-disciplinary approach.

ANB,
“Mr. W, I’m blaming Generation Rescue for throwing out misleading data. There are no studies showing a 1:10,000 rate in 1983.”
First of all Generation Rescue was founded in 2005. I have tee shirts from autism rallys that are older than that say the autism rate is 1:150.
Also, I heard the figure 1:10000 in 1983 when I was attending a parent training program presented by The Bancroft School.
Congressman Burton used numbers 1:250 to 1:150 in 2002.
http://www.youtube.com/watch?v=id-gGYQihaM
It’s fun to watch the FDA lady hem and haw when Burton asks her if she could give a yes or no answer about whether she though thimerosal caused autism. Her answer was a positive maybe.

Here’s a link to a testimony given at Dan Burton’s April 6, 2000 House Government Reform Committee
on Autism and Vaccines.
http://www.feingold.org/megson.html
The doctor says in part;
“In 1978, I learned as a resident at Boston Floating Hospital that the incidence of autism was one in 10,000 children. Over the last ten years I have watched the incidence of autism skyrocket to 1/300-1/600 children. Over the last nine months, I have treated over 1,200 children in my office. Ninety percent of these children are autistic and from the Richmond area alone. The State Department of Education reports that there are only 1522 autistic students in the state of Virginia.”
So there again are the stats of 1:10000 in 1983.

Burton is an idiot. “Autism” didn’t appear as a distinct diagnosis in the DSM until 1980. The earliest population study was Lotter in 1966, who found 4.5:10,000. And why does it matter when GR was started?

So instead of quoting actual peer-reviewed studies, you give us – Dan Burton’s testimony?

Like I said, there’s no credible evidence to back up GR’s claim of an autism epidemic. There was no autism spectrum in 1983 – just autistic disorder. Comparing 1983’s rate for DSM III autistic disorder to today’s rate for the entire spectrum is meaningless. Can we agree on that much?

Troy said:

Hey Club 166,

When was the last time you raised over 1 billion dollars for Md research? Sure he may not be the best spokesman for MD but at least he tried and better yet he did it.

Well, I guess if I was one of the researchers that got most of that money all those years, I’d be happy with Jerry Lewis. However, if I was a person with MD, I might feel a tad bit different.

The MDA telethon raises its money by selling an image of helpless children to be pitied, spending all their time hoping for a cure. In Jerry Lewis’ world, there are virtually no adults with disabilities, no need for accommodations, and no need to focus on the realities of these people’s lives.

The image of those with MD portrayed by Jerry Lewis is one where their lives have no value, save to appear pitiful to help raise funds for the MDA. No amount of money raised is worth that.

Joe

I think autism should be presented as a monolithic disorder, even if that confuses people. It is a spectrum.

Oops – senior moment – this is what happens when writing comments and making dinner at the same time. I mean that autism should be presented as the opposite of monolithic, as it is a spectrum with biomedical diversity and very diverse levels of impairments, abilities, etc.

ANB, I can’t believe you are still wasting people’s time debating whether autism has increased. Let’s accept 4.5 in 10,000. The current rate of 1 in 100 would be 100 in 10,000. That’s 22 times the 4.5 rate. And some say the current rate is higher than 1 in 100. School statitics show huge increases. M.I.N.D. Institute studies show huge increases. The rate of MR and other conditions has not decreased in proportion to the increase in autism — this is not just diagnostic substitution. Yes, there is better diagnosis of milder cases, but you really can’t miss a child who is unable to talk. That does not pass unnoticed, regardless of training or lack thereof. I know that you will nitpick about whatever I say, and it gets really tiresome to keep citing studies and making the same arguements only to encounter endless splitting of hairs.

Here is an article that discusses the increase in autism as well as the DSM-III diagnostic criteria for autism:
http://www.ageofautism.com/2009/09/autism-not-really-on-the-rise-967-impossible.html

ANB says, “Burton is an idiot”. Whoa, impressive scientific reasoning — what a critique of the video linked to by Mr. Wonderful.

Congressman Burton says that his grandson was a normal kid before receiving 9 vaccines at once. Two days later, his behavior changed dramatically and he was running around flapping his hands, lost skills, and regressed into autism. This is one of thousands of “anecdotes” that many are so happy to dismiss as “coincidental”.

But we’re getting off topic. The topic wasn’t whether autism has increased but how autism should be presented to “the public”. Coming home from work with a lot on my mind and three people to feed, I momentarily confused the word “monolithic” with “diverse” — as if Lisa’s last question was whether it is confusing to present autism as diverse, when actually I guess she is asking whether it is confusing to call such a broad spectrum by one name — autism.

I feel that people with autism who are able to express themselves and advocate for themselves should do so. Their perspectives are of course very valuable and of great interest. I also think that parents who tell of their children’s severe problems should not be criticized for not painting a rosier picture. It’s all part of this broad spectrum.

ABN
And why does it matter when GR was started?
Because you said earlier Mr. W, I’m blaming Generation Rescue for throwing out misleading data.
Then you said So instead of quoting actual peer-reviewed studies, you give us – Dan Burton’s testimony?
Do you in fact have any peer-reviewed studies that do show the rates from the 1980s?

Twyla
I feel that people with autism who are able to express themselves and advocate for themselves should do so. Their perspectives are of course very valuable and of great interest.
The problem with that is that they want to speak for everyone on the spectrum. This is like saying that since I wear reading glasses, which is a visual impairment, I should speak for everyone with a visual impairment, even those with 20/200 vision or those who are totally blind.

I also think that parents who tell of their children’s severe problems should not be criticized for not painting a rosier picture. It’s all part of this broad spectrum.
Ah yes, those pesky parents who would like to find a cure for autism. Don’t they know that would be like wiping out a culture?

I think there is general agreement that the number of people with autism has increased. The question is whether that increase is anything like as huge as is implied by the monolithic statements of 1:X.

Clearly there are factors outside of a simple increase in numbers of people with autism that account at least in part for the rise in diagnoses.

New diagnostic categories have been invented (PDD-NOS, Aspergers) that include many people who would never have been diagnosed with autism. Diagnostic substitution is a reality as well.

So the questions are –

1. how many MORE children are diagnosable today with symptoms of classic autism than were diagnosable prior to the DSM IV and the IDEA?

And

2.how many adults are diagnosable today with symptoms that are now consistent with Aspergers or PDD-NOS who never received such diagnoses because they didn’t exist?

Neither of these questions has been answered in a solid, definitive way.

So far as I can tell, consensus within the “mainstream” medical community is that there is some absolute increase in numbers of kids with autism, but that increase is much smaller than is implied by the monolithic numbers.

As to the question about adults who “would have been” diagnosable, that question has been answered in several different ways depending upon who you ask.

Lisa

Mr. Wonderful, you make a perfect argument for NOT presenting autism as a single monolithic disorder.

ASAN should probably speak for themselves. If they do, they’re speaking of a “difference” (Asperger syndrome) that is so distinct from classic autism as to be, in some cases, a gift of creative thought rather than a disability.

Meanwhile, parents of profoundly disabled children are advocating for a cure, better disability services, group housing… things that are critically important to that group, but which the majority of ASAN members may not need at all.

My question is – who are we helping by lumping such distinct groups together? Not only are we confusing the general public with conflicting messages, but we’re also in constant conflict with one another because we have such disparate needs. Meanwhile, “autism” numbers are even more baffling – because we’re counting everyone in the spectrum as if they were alike.

Lisa

Because you said earlier … “I’m blaming Generation Rescue for throwing out misleading data.”

I didn’t say GR is generating its own data. I meant it is cherry picking and/or misinterpreting data to suit its own agenda.

Do you in fact have any peer-reviewed studies that do show the rates from the 1980s?

Here’s a good review of early prevalence rates.

http://www.mugsy.org/wing.htm

Lisa, I’m not aware of “a consensus within the mainstream medical community that there is some absolute increase in numbers of kids with autism.” Which data support that consensus?

ANB: the consensus I’m referring to is based on multiple interviews with top researchers and clinicians at MIND, Children’s Hospital of Philadelphia, Children’s Hospital of Boston, etc.

Perhaps it’s anecdotal, but every one of those individuals I’ve interviewed for articles has agreed that there seems to be at least some absolute increase in autism.

I have to say, too, that none of the actual research I’ve seen on numbers suggests that there is NO absolute increase in the incidence of classic autism. The study done in the UK which suggests that the number of adults with autism matches the number of kids with autism has a lot of issues; while it’s interesting, I personally wouldn’t accept it as authoritative.

Is it your stance that there is absolutely no increase in the numbers of actual cases of classic autism? (just checking!)

Lisa

As I’ve written before, there are no data one way or the other regarding an increase in true prevalence, which is to say the burden of proof is on those speculating that autism really is exploding, skyrocketing, mushrooming, etc.

Still the notion of an autism epidemic is the departure point for the whole “vaccines cause autism” nonsense. Handley calls it “the fork in the road” for his movement. And yet not one shred of credible evidence exists to show that the true prevalence has risen in any statistically meaningful way over whatever time period you choose.

And yes, your evidence is anecdotal, and thus falls far short of what is needed to establish consensus. Belief is not the same as science, and the plural of anecdote is not data.

ANB says “And yet not one shred of credible evidence exists to show that the true prevalence has risen in any statistically meaningful way over whatever time period you choose.” That is absolutely ridiculous. Lots of evidence of increase exists, from many sources. I have posted links to studies before, but you continue to spout this same nonsense unabated.

Mr. Wonderful #40. I agree. That’s why I’m saying that varied perspectives on autism are important. It seems to me that someone with Aspbergers or HFA should be capable of expressing their experiences without putting down other people’s different experiences, e.g. parents doing biomedical treatments who are berated for trying to change or cure their child who has a significant disability and sometimes health issues.

Lisa, I appreciate your being skeptical about that English phone survey of adults, instead of just accepting it at face value.

Twyla, lots of evidence exists for the Loch Ness monster, too. That’s why I used the qualifying adjective “credible”. There is no credible data which point toward, or away from, an increase in true prevalence.

ANB – given the paucity of useful information about the prevalence of autism prior to the 1980’s, do you think it is actually possible to prove an increase? Or do you think this is one of those mysteries that will simply remain a mystery?

And on a related note – do you think there is any useful evidence (for example, the California prevalence study) to show a true increase in autism between, say, 1990 and the present? If not, what would such evidence look like?

Lisa

We actually have good data on the rate of Kanner’s autism from 1966 to the late 1980s. The trouble comes with the apples and oranges comparisons put forth by Generation Rescue, Twyla, and other vaccine rejectionists.

The California DDS numbers are administrative, and thus of no real value in determining a rise in incidence. The MIND Institute’s January, 2009 study had serious limitations, and drew very different conclusions than the MIND Institute’s press release about the study.

One way to prove an increase in autistic disorder would be a population study using DSM III criteria. But why? Isn’t there a better use for research dollars?

We know the circa 1980 rate was about 4:10,000, and we have Fombonne’s meta analysis that shows 20:10,000 for today’s rate. We also know the criteria for DSM IV (R) autistic disorder are far less restrictive than when the category first appeared in 1980. We know we are diagnosing earlier, and that more parents and physicians are aware of the disorder. By the time you consider diagnostic substitution, there’s no good reason to suspect a true increase in prevalence.

And yet it’s just assumed that we are living in the age of autism. It’s absurd, like the anti-vaccine movement itself.

Lisa Mr. Wonderful, you make a perfect argument for NOT presenting autism as a single monolithic disorder.

My question is – who are we helping by lumping such distinct groups together? Not only are we confusing the general public with conflicting messages, but we’re also in constant conflict with one another because we have such disparate needs. Meanwhile, “autism” numbers are even more baffling – because we’re counting everyone in the spectrum as if they were alike.
Thank you Lisa. That is what I have been saying. Now, I have a question. Who invented the term “autism spectrum”. It is not listed in and version of the DSM.
DSM IV lists
Pervasive developmental disorders
299.00 Autistic disorder
299.80 Rett’s Disorder
299.10 Childhood Disintegrative Disorder
299.80 Asperger’s Disorder
299.80 Pervasive Developmental Disorder NOS
and
Attention-deficit and disruptive behavior disorders
Attention-Deficit Hyperactivity Disorder
314.01 Combined subtype
314.01 Predominantly hyperactive-impulsive subtype
314.00 Predominantly inattentive subtype
314.9 Attention-Deficit Hyperactivity Disorder NOS
Conduct disorder
312.81 Childhood onset
312.82 Adolescent onset
312.89 Unspecified onset
313.81 Oppositional Defiant Disorder
312.9 Disruptive Behavior Disorder NOS

BUT those who speak of “autism spectrum disorders” include ADHD in with all the 299. criteria.
Also, when people speak of “autism spectrum disorders”, they never seem to mention Rett’s disorder.

DSM-III Criteria

In 1980, the third edition of the Diagnostic and Statistical Manual of Mental Disorders, known as DSM-III, was published by the American Psychiatric Association. In this, the term ‘pervasive developmental disorder’ was used for the general category of autism and related conditions. A subgroup labelled ‘infantile autism’ was defined by;

1. lack of responsiveness to others;
2. language absence or abnormalities;
3. resistance to change or attachment to objects;
4. the absence of schizophrenic features;
5. onset before 30 months.
DSM-III also has categories for childhood onset (after 30 months and before 12 years) and for atypical pervasive developmental disorder.
Also you say
I’m not aware of “a consensus within the mainstream medical community that there is some absolute increase in numbers of kids with autism.” Which data support that consensus?
Would you consider the CDC as being outside the mainstream medical community? If not, read below

http://www.webmd.com/mental-health/news/20021231/cdc-autism-rates-higher-than-thought

ABN #50.
We actually have good data on the rate of Kanner’s autism from 1966 to the late 1980s. The trouble comes with the apples and oranges comparisons put forth by Generation Rescue, Twyla, and other vaccine rejectionists.
You do realize that these folks aren’t “vaccine rejectionists”. They have seen the damage done by vaccines given to their children.

One way to prove an increase in autistic disorder would be a population study using DSM III criteria. But why? Isn’t there a better use for research dollars?
What research would you suggest? What if the research proves the “vaccine rejectionists” are right?

“What research would you suggest?”

Read carefully:

One way to prove an increase in autistic disorder would be a population study using DSM III criteria.

If the research shows that autism has mushroomed, ballooned, Tsunamied, etc, then I would change my point of view. Data currently show a five-fold increase in DSM 299.00 autism since the 70s or earlier, but the 299.00 criteria have changed over the years.

Mr. W, did you read the part that came after the headline?

Dec. 31, 2002 — New research from the Centers for Disease Control and Prevention suggests that autism rates are at least 10 times higher than three previous studies in the U.S. have suggested. But experts say it is not yet clear if the increase is real or reflects changes in reporting and diagnostic practices.

“Despite all of the talk of an epidemic of autism, there is really no way to know if there is a real increase in cases because so many things have changed within the last 10 years or so,” CDC epidemiologist Marshalyn Yeargin-Allsopp, MD, tells WebMD.

That doesn’t sound like scientific consensus to me. What am I missing?

ABN: “What research would you suggest?”

One way to prove an increase in autistic disorder would be a population study using DSM III criteria.
I was thinking of research to discover the cause and possible cure or prevention of autism. Research to prove or disprove a drastic increase would only waste a lot of money to show that one group was right and one was wrong.
It wouldn’t actually help people with autism.

I agree.

ABN
You left out the paragraphs in the middle.
CDC investigators have tracked autism cases in the metropolitan Atlanta area since 1996, finding that 34 children per 10,000 either have autism or disorders linked to it. That is far higher than the average estimate of roughly three autism cases per 10,000 children in studies conducted in the U.S. before 1990. But it is in line with another recently reported CDC investigation from New Jersey and studies from the United Kingdom and Canada.

The Atlanta surveillance is the first ongoing investigation of autism within a population in the United States, but the CDC has recently begun to track autism cases at a dozen other sites around the country. CDC epidemiologist Marshalyn Yeargin-Allsopp, MD, who led the Atlanta investigation, tells WebMD that the new surveillance network will provide a much better picture of the true incidence of autism within the U.S.
Changes the context a bit that way doesn’t it?

No Mr. W, it doesn’t change a thing. One more time: DSM criteria in the 1980s were more restrictive than what the CDC has been using since 1996. Also, the amended 1991 version of IDEA required school districts to precisely count children with disabilities, which increased the numbers of cases.

There is no “mainstream medical consensus” that autism’s true prevalence has risen:

“Despite all of the talk of an epidemic of autism, there is really no way to know if there is a real increase in cases because so many things have changed within the last 10 years or so,” CDC epidemiologist Marshalyn Yeargin-Allsopp, MD, tells WebMD.

Would you consider the CDC as being outside the mainstream medical community?

When I’m confronted by new evidence, I change my point of view. Can you do the same?

http://www.fightingautism.org/idea/autism.php

Thanks for the chart showing administrative data for autism rates from 1992 to 2007.

You’re welcome.

Ann Dachel has some interesting things to say about autism prevalence at:
http://www.ageofautism.com/2009/12/autism-and-adulthood-the-looming-future.html

Ann Dachel’s reach exceeds her grasp.

ABN
“No Mr. W, it doesn’t change a thing. One more time: DSM criteria in the 1980s were more restrictive than what the CDC has been using since 1996. Also, the amended 1991 version of IDEA required school districts to precisely count children with disabilities, which increased the numbers of cases.
If there isn’t an increase in classic autism, the kind that will require lifelong support for everyday living, why are state agencies that provide support for people with developmental disabilities and US agencies such as Health and Human Services and CDC saying there is going to be a larger number of adults needing adult services than there are now? Have they been asleep at the switch for a bunch of years? Haven’t they been providing services to the people who weren’t considered autistic by the DSM III criteria but would be by DSM IV or IVR?
Shame on them.

ABN says:
“Burton is an idiot.”
“Ann Dachel’s reach exceeds her grasp.”
Do you ever say anything nice about anyone?
Do you have any peer-reviewed studies to prove your statements?

The link to fightingautism.org had some interesting figures and charts.
The third chart “Annual Growth of Number of Cases” is interesting. The red line “Ages 6-22″ shows 28% in ‘95 and 18% in ‘96 and back up to 27% in ‘98.
Does that mean 10% aged out of the system in ‘96 and then there was a surge of new kids in ‘97 and ‘98?

Mr. W, there’s no shame in changing one’s beliefs to accommodate new evidence.

Is that nice enough?

I saw Burton’s C-Span performance. The man is either ignorant about autism, an idiot, or a shameless liar. I’m going with idiot, but I’m open to a different interpretation.

http://www.usatoday.com/news/health/2009-10-05-autism-increase_N.htm
“Prompted by the Pediatrics study, the Centers for Disease Control and Prevention is announcing not-yet published results of a second study. It finds about one in 100 8-year-olds has an autism spectrum disorder, or ASD. In a similar 2007 study, the CDC placed the rate at one in 150. Details of the study are due this year.”
That seems to be quite an increase in only two years. And all based on the same version of DSM.

ABN Says
“Mr. W, there’s no shame in changing one’s beliefs to accommodate new evidence.”
Well, don’t let me stop you from changing your beliefs.

Don’t let me stop you from presenting credible evidence. ; -)

re #66 Mr. W -
That chart shows percentage increases. So the cases of autism in U.S. schools did continue to increase, but not by as much in 1996 as in 1995 and 1997.

If you look at the first chart, “Number of Cases” and divide the numbers in 1995, 1996, and 1997 with the number from the prior year you will see where the percentages come from, i.e.:
# in 1995/# in 1994 = 28%
# in 1996/# in 1995 = 18%
# in 1997/# in 1996 = 24%

That seems to be quite an increase in only two years. And all based on the same version of DSM.

Yes, it does. But that still doesn’t make the increase real.

The 2007 CDC study was based on a survey of 400,000 eight-year-olds in 2002. From the CDC:

In 2002, across the 14 sites, total prevalence of ASDs in children aged 8 years ranged from 3.3 to 10.6 per 1,000 children. The overall mean prevalence was 6.6 per 1,000 children.

The “second study” is based on a survey of eight-year-olds conducted in 2004. It estimated a higher rate for ASDs – 1:100.

The Pediatrics study released Oct. 5, from the National Children’s Health Survey, was based on a phone survey, and represents children ages 3-17 in 2007. It showed a rate of 1:91.

None of this is a surprise to people who have been tracking autism numbers over the decades. Ten years ago, UK researchers Lorna Wing and David Potter estimated a 1:100 rate. They wrote:

Because we concentrated on the children with learning disabilities (IQ under 70) we saw very few with the pattern described by Asperger. We had to wait for the study by Christopher Gillberg in Gothenberg to find out how many children with IQ of 70 and above were also in the autistic spectrum. As described above, combining the results of these two studies gave an overall prevalence rate for the whole autistic spectrum, including those with the most subtle manifestations, of 91 per 10,000 – nearly 1% of the general population.

These studies are affected by more than just the DSM criteria applied by the researchers. Methodology matters, too. The CDC doesn’t actually measure the real number of autistics in a population; it counts the number of people already identified as having autism and who are listed in the databases. In the Pediatrics survey, researchers randomly called 78,000 homes and ask parents of children ages 3 to 17 whether “health care workers or doctors” had ever told them that their children had an ASD. That survey also found a 30% recovery rate for children who had once supposedly had autism.

The way questions are asked can also affect data. The CDC’s National Health Interview Survey reported a 1:175 rate for 2003-2004 – the same period that another CDC study found a 1:100 rate. In 2003, the National Children’s Health Survey asked whether a doctor had ever said that the child had “autism,” and the yes response was 0.5%. In 2007 it asked whether a doctor had ever said that your child had “autism, Asperger’s disorder, pervasive developmental disorder, or other autism spectrum disorder” and got a yes response of 1.0%. So the most recent figure was for the spectrum of ASD, where the prior figure was not.

Estimating ASD prevalence is difficult and imprecise, and it’s too easy to jump to conclusions about the data. I stand by my claim that there is no conclusive evidence one way or the other with regards to a real increase in autism prevalence.

IQ is another confounding issue. Our son has been variously tested and found to have an IQ that’s above 100, below 100, and indicative of MR.

Watching the testing techniques (and knowing more about the tests), I can see that the outcome of test has as much to do with the testER as with the testEE. In addition, new nonverbal tests are making it less likely that a child will appear to have MR.

Obviously, this doesn’t mean that IQ’s among people with autism are on the rise, but that our methods for evaluating IQ are changing!

Lisa

ANB, that’s just a bunch of smoke screens and hair splitting and nitpicking (to mix some metaphores). Ultimately we never know anything, except maybe “I think therefore I am”. If you are religious, maybe you would believe it if God handed you a stone plaque engraved with the correct autism figures. Obviously, there are many confounding factors when trying to gather exact rates of autism. But the fact is, lots of evidence from various sources (including school statistics, government agencies, and formal peer reviewed studies) show huge increases. And any teacher or psychologist or speech therapist who’s been practicing for 30 or more years can tell you that the numbers did not used to be anywhere near what they are now.

Ultimately we never know anything, except maybe “I think therefore I am”.

Bingo! In science one can never completely rule anything out. The most we can say is, for instance, “There is no known association between vaccines and autism”, or “There are no data indicating a true rise in the prevalence of autism.”

Nice that we can agree on something. ; -)

But there is a lot of data indicating a true rise in the prevalence of autism. And there is a known association between vaccines and autism.

The word “ultimately” is important in the sentence you quoted. There is a lot that we do know, even if everything we know is subject to challenge, refutation, change.

And if, as you say, “In science one can never completely rule anything out,” then vaccine defenders shouldn’t be so quick to say that they know vaccines don’t cause autism, no matter how many parents have witnessed post-vaccine transformations, no matter how much science is developing which makes that link plausible.

Even the most discredited ideas have data and evidence – creationism, white supremacy, holocaust denial – you name it. And those true believers have their “experts” and “studies”. There is also evidence for the existence of Santa Claus and the Lost City of Atlantis.

So it’s importance to discriminate between just “evidence” and “credible evidence”. If credible evidence exists for the purported autism epidemic, I haven’t seen it, and neither have the epidemiologists who know this subject best. And if there is a known association between vaccines and autism, then proof needs to be offered in the form of hard data published in high impact peer-reviewed journals, where other scientists can examine and test those claims.

Yes, “Vaccines don’t cause autism” has become shorthand for “Dozens of studies conducted over two decades and across three continents have looked for, and failed to find an association between vaccines and autism.” ; -)

ANB, for someone who professes to believe so much in all evidence needing to be backed up by peer reviewed published studies, you sure make a lot of unsupported statements, such as “If credible evidence exists for the purported autism epidemic, I haven’t seen it, and neither have the epidemiologists who know this subject best.” Really? Like who?

I have posted quite a bit of data, here and in conversations with you on other blogs, supporting the fact that autism has increased exponentially. But, if you keep your eyes closed, you will never see it, because you don’t want to see it.

As far as studies on vaccines not causing autism, see http://www.14studies.org/ and http://www.putchildrenfirst.org/aboutus.html

Really? Like who?

Eric Fombonne, Richard Grinker, Bennett Levanthal, Lorna Wing. If you need more names, let me know.

And as long as we’re referencing favorite websites:

http://www.autismstreet.org/weblog/?p=65

Twyla, forgive me if I’ve asked you before, but when you refer to an “autism epidemic”, which PDDs do you mean?

Do you accept GenRes’s claim that the autism rate in 1983 was 1:10,000?

By what logic can you make a straight comparison of the 1983 rate for autism with today’s rate for all five ASDs?

From this month’s issue of Spectrum magazine:

“To say that the numbers have always been this way is shocking. There is no evidence of that. Every bit of evidence says that the numbers have increased,” says [Mark] Blaxill. “It’s a propaganda effort to normalize autism, and it’s spectacularly irresponsible. It’s morally wrong.”

Blaxill points to previous prevalence studies that show that rates have in fact increased. One early study was conducted by Darold Treffert, M.D. in Wisconsin in the 1970s. Treffert found a prevalence of less than 1 in 10,000.

In 1987, a peer-reviewed study called “A Prevalence Study of Pervasive Developmental Disorders in North Dakota” was published. As reported by J.B. Handley at Age of Autism earlier this year, researchers in North Dakota considered every one of the 180,000 children under 18 living in the state in 1987. They found a prevalence of 3.33 per 10,000 or 1 in 3,300. Twelve years later, researchers returned for a second look at the 180,000 children considered in the original study. They found they had miscounted by one child. If the prevalence has always been 1 in 100, researchers should have found hundreds of children on the spectrum. They found only 59.

Another study that contradicts the theory that prevalence has always been 1 in 100, was released earlier this year. Published in the January 2009 edition of the journal Epidemiology, the study was conducted by Irva Hertz-Picciotto, Ph.D., M.P.H., a professor and internationally known environmental epidemiologist at the U.C. Davis Medical Investigation of Neurodevelopmental Disorders (M.I.N.D.) Institute. The study found a seven- to eight-fold increase in the rates of children being diagnosed with autism in California. Hertz-Picciotto found that about one tenth of the increase could be attributed to the inclusion of milder cases of autism and roughly 24 percent of the 600 to 700 percent increase can be attributed to children receiving diagnoses at a younger age. “There is still a lot to explain,” said Hertz-Picciotto of the study in January. “The study only accounts for about 200 percent of the increase.”

http://www.spectrumpublications.com/index.php/magazine/one_in_wtf_/