Dismay at Aspie ‘hate’

15 Feb

I read Bev’s latest blog entry bemused and increasingly dismayed. I thought (hoped) maybe she was wrong and had grasped the wrong end of the stick but not only is that unlikely coming from Bev it was wrong. She was spot on. There really were, I realised to my dawning amazement, people with an Aspergers diagnosis who were upset at the possibility of the DSM (V) placing them inside an overall category of ‘autism’. And not for any particularly legitimate reason but mostly because they didn’t want to be associated with the people who I’ve heard them describe as ‘low functioning’.

The comments I read under the story featuring Michael John Carely of GRASP for example pointed towards an internal selfishness bordering on disgust for those who _already_ share their place on the spectrum.

A stunningly nasty comment on this blog illustrates the issue even more handily:

Medical science used to have morons, idiots and imbeciles to describe people with defective brains, but those words became pejoratives, and mentally retarded was substituted. Then mentally retarded became a pejorative, and that got switched to developmentally disabled. Many parents with children born with defective brains glommed onto “autistic” because it had more cachét than retarded or fetal alcohol syndrome or brain damaged, perverting the word autistic and turning it into a new synonym for retarded.

So I don’t want to be called “autistic”. I prefer the distinction Asperger’s brings me; that I am endowed with a different brain, not suffering from a defective brain.

The only positive thing you can say about this commenter is at least they are being totally honest. I’ve read an uncomfortable amount of comments from aspies over the last few days that skirt around the exact same feeling but just don’t come out and say it quite so blatantly.

I know for a fact that not all aspies feel like this but I think those that don’t need to follow Bev’s example and come out and say so. Loudly and clearly. I don’t believe that aspies who want to disassociate themselves from their autistic comrades deserve any part in a movement like neurodiversity. I hope, I believe, that the aspies I count amongst my friends and colleagues feel that way too.

Update
Ari pointed me towards some comforting support from ASAN on the issue:

http://www.newscientist.com/article/dn18508-psychiatrys-draft-new-bible-goes-online.html?full=true
http://blogs.edweek.org/edweek/speced/

Update No.2
More blog reactions. If anyone knows of more please leave the address in the comments and I’ll add them to what I hope will be an ever growing list.

Clay – http://cometscorner-clay.blogspot.com/2010/02/true-neurodiversity-welcomes-dsm-v.html

Samantha – http://unclesamscabin.blogspot.com/2010/02/resisting-taint-of-autism.html

Andrew Wakefield – I have no need of continued registration

14 Feb

In a remarkable and somewhat odd statement put out by Andrew Wakefield, he states:

I have no need of continued registration with the GMC…

Which is somewhat contrary to his statement of 2004 that;

It has been proposed that my role in this matter should be investigated by the GMC. I not only welcome this, I insist on it…

Why would someone insist upon being heard by an organisation he holds so little respect for he longer wants to be a member?

During the rest of the statement, he provides thanks to the support of his economic fan base – the parents, imcluding no doubt the parents of the children whom counr amongst the 11 counts of sticking tubes and needles into developmentally-challenged children without ethical approval, and nine counts of doing so contrary to the children’s wellbeing.

In a private email Brian Deer stated his opinion – which I share – that:

There can’t by any doubt that with four charges of dishonesty, including research and financial misconduct, that he knows he will be erased from the medical register.

Just _one_ of these substantiated charges would be enough to get a GP struck off. With the amount Andrew Wakefield has against his name it would be a small miracle if this didn’t happen and he is pre-emptively striking back at the GMC, declaring he doesn’t care if they do strip him of his right to be referred to as ‘doctor’.

I’ll leave the last words to Brian Deer, the man who single handedly brought down Andrew Wakefield:

His latest statement illustrates a more sinister aspect of Andrew Wakefield’s conduct: the mismatch between what has occurred outside the hearing and what has gone on inside. Outside – appealing to his economic base – he claims he is a victim of sinister forces – the drug industry and government and so forth – when he’s not the slightest evidence of this, (and neither have I). He was taken down by an old fashioned journalistic investigation, executed in the public interest.

And yet, inside the hearing, his behaviour was quite different. He called no witnesses whatsoever. While the prosecution called a parent who provided devastating evidence, he didn’t risk putting any of the ringleaders outside the building into the witness chair, where they could be cross-examined over how vulnerable children came to be brought to a hospital with no department or reputation for evaluating developmental disorders, and where doctors seemed all-but-entirely uninterested in the children’s futures. Nor did he put any questions whatsoever to the government’s vaccine chief, despite Wakefield supporters turning up for a much-hyped showdown. Nothing was asked, because Wakefield has nothing.

What the Wakefield project was all about was getting into the small intestines and spines of children without anybody finding out the reason. *And this is where, rightly, that project has brought him.*

Ginger Taylor goes off the deep end

13 Feb

Like Wade Rankin, Ginger Taylor used to be someone that you could have a decent conversation with regarding vaccines and autism. Not any more. Increasingly, since she was caught out smearing the wrong man her blogging has become erratic and, well, odd.

Today reaches a new low point in Ginger’s blogging career. She has drawn a map listing the ‘forces’ ranged up against poor old Andy ‘Dr Dreamy’ Wakefield. ‘Look at the energy flow in this thing…’ she intones heavily as she describes how Rupert Murdoch and the US Arms industry are exerting pressure on Andy.

Ginger Taylor has become Richard Nixon – believing that everyone in the modern world is oout to get her, or in this case, her paranoia proxy Andrew Wakefield.

California’s Invisible Autism Epidemic Continues

13 Feb

Over a year ago, I wrote a post at Autism Street titled,
“California’s Invisible Autism Epidemic“.

At the time, IDEA child count and population data was available through 2007. Admittedly, what follows is a bit of a repeat, but there is updated information included too.

That January 2009 post asked the following question:

It would seem that many an “autism advocate” has warned us of an impending “crisis” that looms for California’s healthcare systems and schools. If autism caseload is increasing, and it represents a real increase in autism itself, then a next logical conclusion is that, ceteris paribus, similar increases will also be seen in the total numbers of children in special education in California’s schools, right?

And suggested an answer:

Wrong – well, maybe wrong.

Another year has passed, and IDEA data for 2008 is beginning to become available. Here’s what the preliminary IDEA data for California kids in elementary, middle, and high schools shows for autism now:

Autism

To borrow a phrase from Bev over at Asperger Square 8, “Don’t Panic!”.

Also, please remember, that like the CDDS client data, the IDEA is not descriptive epidemiology.

The USDE data are not reliable for tracking the prevalence of autism, and they in fact never were meant to fill this need.

Source

What we can actually learn from this, is that the increase in the number of kids receiving special education services who wear an “autism” category label continues to increase.

Of course the, “not so fast” is next.

The Invisible Epidemic

The next graph shows a bigger picture in California. It’s the number of students (age 6-17) receiving special education services, as a percentage of the population (age 6-17) for all disability categories.

All Disabilities

The percentage has been flat, at a little under 9.2%, for 11 straight years. How is this possible? If there have been “epidemic” increases in the autism category, all things being equal, we should have seen this number rise, shouldn’t we? And therein lies one potential answer – all things are probably not equal. It’s true that within the IDEA data for California, the increase in the use of the “Autism” category label is not offset by decreases in the use of the category label “Mental Retardation”. The increase is also not offset by a corresponding decrease in use of the label “Speech or Language Impairment”.

Speech or Language Impairment

A communication disorder such as stuttering, impaired articulation, a language impairment, or a voice impairment that adversely affects a child’s educational performance.

Source

So what else is there? Something big in California?

Autism and SLD's

Specific Learning Disability

A disorder in one or more of the basic psychological processes involved in understanding or in using language, spoken or written, that may manifest itself in an imperfect ability to listen, think, speak, read, write, spell, or to do mathematical calculations, including conditions such as perceptual disabilities, brain injury, minimal brain dysfunction, dyslexia, and developmental aphasia. The term does not include learning problems that are primarily the result of visual, hearing, or motor disabilities, of mental retardation, of emotional disturbance, or of environmental, cultural, or economic disadvantage.

Source

I can still see how, in days of lower awareness and recognition of autism among parents and educators, an autistic child could easily be placed in this category (as a kind of catch-all), based on the first portion alone – “A disorder in one or more of the basic psychological processes involved in understanding or in using language, spoken or written…”. It could even be the case, that alongside less awareness and recognition, there was also some degree of unwillingness to use a category label like “Autism” on the part of both parents and educators.

Interestingly, the apparent in increase of .09% of the resident population categorized under “autism” appears to be offset by a .09% of the resident population decrease for “specific learning disabilities” in 2008.

Source data can be found at http://www.ideadata.org

Wakefield Monkey Study Withdrawn by Editor

12 Feb

In case you missed it, Dr. Wakefield is a co-author on a series of studies vaccinating macaques. They have been touted as “blockbuster” studies, and also critiqued sharply.

With a hat-tip to KWombles for the information: The paper has been withdrawn

If you check the Neurotoxicology website, the paper now has “Withdrawn” added to the tile:

“WITHDRAWN: Delayed acquisition of neonatal reflexes in newborn primates receiving a thimerosal-containing Hepatitis B vaccine: Influence of gestational age and birth weight”

with the statement at the bottom:

This article has been withdrawn at the request of the editor. The Publisher apologizes for any inconvenience this may cause.

The full Elsevier Policy on Article Withdrawal can be found at http://www.elsevier.com/locate/withdrawalpolicy.

Note to users: Withdrawn Articles in Press are proofs of articles which have been peer reviewed and initially accepted, but have since been withdrawn before being published in this journal. Reasons for withdrawal may be due to a decision by the author and/or editor, accidental duplication of an article elsewhere, or because the content contravenes the Elsevier publishing policy in some way. Withdrawn Articles in Press are only visible to users when following an external link, e.g., an end user following a PubMed or DOI link. Such Withdrawn Articles in Press are not searchable or otherwise available in ScienceDirect.

If you follow the link for the Elsevier policy on withdrawing papers, you will find these statements:

Article Withdrawal: Only used for Articles in Press which represent early versions of articles and sometimes contain errors, or may have been accidentally submitted twice. Occasionally, but less frequently, the articles may represent infringements of professional ethical codes, such as multiple submission, bogus claims of authorship, plagiarism, fraudulent use of data or the like.

and

Article Withdrawal

Articles in Press (articles that have been accepted for publication but which have not been formally published and will not yet have the complete volume/issue/page information) that include errors, or are discovered to be accidental duplicates of other published article(s), or are determined to violate our journal publishing ethics guidelines in the view of the editors, may be “Withdrawn” from ScienceDirect. Withdrawn means that the article content (HTML and PDF) is removed and replaced with a HTML page and PDF simply stating that the article has been withdrawn according to the Elsevier Policy on Article in Press Withdrawal with a link to the current policy document.

Google Buzz – follow Left Brain Right Brain

12 Feb

If you’re a Google Buzz user you can now follow LBRB on our own dedicated Buzz account. Search for lbrainrbrain@googlemail.com and start following at your leisure 🙂

This accompanies our Twitter and Facebook accounts which you can use to follow us too.

Autism Science Foundation offering places at IMFAR 2010

11 Feb

Funds will enable parents and other stakeholders to attend the leading autism research conference and share what they’ve learned with the broader autism community.

The Autism Science Foundation today announced that is offering a limited number of grants to parents of children with autism and other stakeholders to support attendance at the International Meeting for Autism Research (IMFAR), to be held in Philadelphia, May 20-22, 2010. Awards of up to $1000 can be used to cover registration, travel, accommodations, meals and other directly related expenses, including childcare.

After the conference, grant recipients will be expected to share what they’ve learned with families in their local communities and/or online.

IMFAR is an annual scientific meeting, convened each spring, to promote, exchange and disseminate the latest scientific findings in autism research and to stimulate research progress in understanding the nature, causes, and treatments for autism spectrum disorders. IMFAR is the annual meeting of the International Society for Autism Research (INSAR).

“We are thrilled to be able to give back directly to the autism community in a research-focused way,” said Alison Singer, president of the Autism Science Foundation. “The award recipients will bring critical new research information to their communities, increasing the speed with which the latest data are shared with the broader autism community.”

“These scholarships are a wonderful opportunity to bring more stakeholders to the IMFAR and improve dissemination of the latest research findings presented at the conference,” said Dr. David Amaral, president of INSAR and director of research at the University of California at Davis M.I.N.D. Institute.

To apply, send a letter to grantsATautismsciencefoundationDOTorg describing why you want to attend IMFAR and, most importantly, explaining how you would share what you learn there with the broader autism community. Letters should be sent as Microsoft Word attachments of no more than 2 pages, 12-point type, “Arial” font, with standard margins. In the subject line please write: IMFAR Grant. Letters must be received by March 15, 2010. Recipients will be announced in April.

Anthony Cox published in PJ Online

11 Feb

Our very own Anthony Cox was published today in PJ Online (gateway to the world of pharmacy and medicines) concerning the MMR saga. I’ll copy and paste a key paragraph then urge you to go read the whole piece which is an excellent summation of events thus far.

In US court testimony in 2007, Chadwick stated that he had tested all the samples from Wakefield’s ASD children and found no MVV present. Wakefield was made aware of this before the publication of the 1998 paper, but saw fit not to draw attention to this negative finding that undermined his hypothesis.

Coming soon, the DSM-V. No more “PDD-NOS”, no more “Asperger”

11 Feb

Yes, a new version of the Diagnostic and Statistical Manual (DSM) is in the works. You’ve probably heard “DSM-IV” or read it a number of times. It is the manual used to describe the various “mental disorders” and the criteria for diagnosing them. (Pervasive Developmental Disorders or PDD’s are described there. These include Autistic Disorder, Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS), Asperger Syndrome, Rett Syndrome and Childhood disintegrative disorder. If the proposed changes go into place, all that will be left is Autism Spectrum Disorder.

It isn’t that people with diagnoses of Asperger or PDD-NOS will no longer will no longer be recognized as having a diagnosis. It is just that the diagnosis name will be replaced with Autism Spectrum Disorder.

Here is are the proposed DSM-V criteria for Autism Spectrum Disorder (299.00)

Autism Spectrum Disorder

Must meet criteria 1, 2, and 3:

1. Clinically significant, persistent deficits in social communication and interactions, as manifest by all of the following:

a. Marked deficits in nonverbal and verbal communication used for social interaction:

b. Lack of social reciprocity;

c. Failure to develop and maintain peer relationships appropriate to developmental level

2. Restricted, repetitive patterns of behavior, interests, and activities, as manifested by at least TWO of the following:

a. Stereotyped motor or verbal behaviors, or unusual sensory behaviors

b. Excessive adherence to routines and ritualized patterns of behavior

c. Restricted, fixated interests

3. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

Compare this to the DSM-IV criteria

299.00 Autistic Disorder

1. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):
1. Qualitative impairment in social interaction, as manifested by at least two of the following:
1. marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction.
2. failure to develop peer relationships appropriate to developmental level
3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
4. lack of social or emotional reciprocity
2. Qualitative impairments in communication as manifested by at least one of the following:
1. delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
2. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
3. stereotyped and repetitive use of language or idiosyncratic language
4. lack of varied spontaneous make-believe play or social imitative play appropriate to developmental level
3. Restricted, repetitive, and stereotyped patterns of behavior, interests, and activities, as manifested by at least of one of the following:
1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
2. apparently inflexible adherence to specific, nonfunctional routines or rituals
3. stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole body movements)
4. persistent preoccupation with parts of objects
2. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.
3. The disturbance is not better accounted for by Rett’s disorder or childhood disintegrative disorder.

For a good discussion, there is an op-ed piece in the New York Times by Prof. Roy Richard Grinker. Prof. Grinker discusses about how the separate category of Asperger Syndrome really is not necessary in today’s culture. The reduced stigma attached to Autism makes it less helpful to have a separate name for “less severe” autism.

Professor Grinker was also interviewed for the United States’ National Public Radio. You can read or listen on their site.

Autistic Disorder, PDD-NOS, Asperger Syndrome and Childhood Disintigrative Disorder will all be a part of the new “Autism Spectrum Disorder”. Rett Syndrome will not be in the DSM-V at all.

One thing this will change is access to services–or possibly. For example, the State of California has “autism” as an eligibility category in the Department of Developmental Disabilities. This was put in place before the DSM-IV and the diagnosis of Asperger Syndrome was used. The state has interpreted the law to mean that only Autistic Disorder is a qualifying diagnosis, denying people with PDD-NOS and Asperger diagnoses unless they meet the criteria for the “other category”. This has put pressure to diagnose “Autistic Disorder” over PDD or AS.

Given the current budget crisis in the State of California, it isn’t as though having a diagnosis of “autism” is a key to great services anyway.

That all said, it will be interesting to hear the discussion of this change. One point that is interesting is the removal of the age 3 limit. Before, there had to be onset of symptoms before age 3. Now it is a more general statement: “Symptoms must be present in early childhood”. I find it interesting that the lack of imaginary play statement is gone as well.

The DSM is not a checklist. In the end, it will be the diagnostic instruments like the ADOS that will determine whether someone qualifies for a diagnosis. I wonder how they will modify these instruments? The “imaginary play” requirement seems to be in the ADOS as it stands now, with the birthday party section for example.

Maternal age affects autism development?

10 Feb

A new study that looked at a large birth cohort (almost 5 million participants) over a 10 year period has announced that maternal age is an indicator of developing autism with an approximately 50% higher risk for a woman in her forties than a woman in her twenties.

The researchers looked at the records for all births in California between Jan 1990 and Dec 1999. Cases of autism were identified from this cohort using the records from the Early Start Report (ESR) for children under three, and the Client Development and Evaluation Report (CDER) for children over three.

A diagnosis of autism was defined as either positive for Developmental Disabilities on the ESR, or an autism level of one a CDER record/ICD code for autistic disorder. After excluding children from multiple births and those with missing data there were 12,159 cases and 4,935,776 controls.

Thats an interesting autism rate of 0.2% which might indicate more than maternal age that ESR or CDER is not that good at catching autism diagnoses as its a very low rate compared to the US national 1%.

This paper also lacks strength when looking at confounding factors – admittedly a tricky proposition as we don’t know what causes autism – but it may be of interest that the confounding factors that they _did_ account for were mainly ethnocentric i.e. race, gender etc and that they found that yep – whites were mainly very well represented. It seems very likely therefore that of possibly more interest that maternal age might be that not enough efforts are being made by local authorities to go into non-white enclaves.

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