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US Supreme Court Ruling on Special Education

24 Jun

The US Supreme Court has ruled in the case of Forest Grove School District v T.A. The question was fairly simple: can a child be granted a private placement (outside of the state educational system) if that child doesn’t receive any services from the district?

The district in question argued that the Individuals with Disabilities in Education Act (IDEA) states that a placement could not be paid for (or in this case reimbursed as the parents were footing the bill at first) if:

“previously received special education or related services under the [school’s] authority.”

The family argued that the key provision of the IDEA is the concept of FAPE: the school system must provide a Free Appropriate Public Education. If the district has no appropriate placements, how can the parents be expected to place their child with the district?

The US Supreme Court sided with the parents:

Held: IDEA authorizes reimbursement for private special-education services when a public school fails to provide a FAPE and the private school placement is appropriate, regardless of whether the child previously received special-education services through the public school.


Kristina Chew has covered this already at Change.Org, as have others.

This is exactly the sort of topic we as a community and as a part of a greater disability community should be discussing. It is vitally important to those with children in the US. I hope that such decisions will have impact internationally as well.

It’s new! It’s spam! It’s revitaPOP: The MB12 Lollipop

23 Jun

I just got a nice spam email from Stan Kurtz, inventor. See, he invented this lollipop with methyl B12 in it to cure…well…almost everything.

Actually, I am a bit confused on that point. I often am from claims in alternative medicine. You see, from his website, Mr. Kurtz states

MB12 is a very unique vitamin and deficiency can affect vision, intestinal function, the ability to protect against infections and toxins, nerve functioning, and DNA replication.

Dang, it protects against DNA replication!?! Does that sound, well, problematic to anyone else? (see comments below. I mis-read the above statement.)

On his website, Stan Kurtz himself tells us that:

What I can tell you is that MB12 truly changed my life. I suffered for years with irritable bowel symptoms, chronic viral infecitons and ADHD and after I took this product I felt better. Since then I’ve personally observed hundreds of people’s lives change through the supplementation of MB12.

You see, it doesn’t “treat” anything, but it changes your life if you have certain disorders. Also, mB12 is “involved in” a whole host of disorders. No direct claims that mB12 supplementation “treats” the disorders. Just a great big implication.

But, then there is the disclaimer. Always a disclaimer. Gotta have a disclaimer.

These products are not intended to diagnose, treat, cure or prevent any disease

No use spending a lot of time on the contradictory nature of claims made by people touting supplements. Mr. Kurtz didn’t invent this sort of doublespeak, and he won’t be the last to use it.

Still, I thought this “revitapop” thing was odd, so I checked a few things out. Like, Stan Kurtz’s otehr website which touts the benefits of MB12, but also states:

Stan has chosen not to sell or profit from the use of this vitamin.

I guess it depends on your definition of the word “sell” or “profit”? $35 for 30 lollipops sounds like there could be room in there for profit.

What also caught my eye was this: “* patent pending”. It caught my eye because I thought, “How can someone patent this?”

I can’t find the patent application for the lollipop version of MB12, but I did find the patent application for his MB12 nasal spray. Patent application US29012039A1.

Claim one of the patent describes the vast number of disorders that are “treated” with this nasal spray:

A method of treating a psychological or neurophysiological disorder, comprising nasally administering methylcobalamin, or a pharmaceutically acceptable salt thereof, to a person in need of such treatment in an amount sufficient to treat the disorder in the person, wherein the disorder is selected from the group consisting of:attention deficit hyperactivity disorder (ADHD), anxiety, depression, stress and chronic stress, socialization problems, mood problems, behavior problems, memory problems, dislexia, depth perception problems, color viewing problems, visual and auditory processing problems, light modulation problems, night vision problems, speech problems such as finding words, apraxia, and articulation problems, sleep regulation problems, eye or muscle movement problems, chronic fatigue problems, digestion problems, sensitivity to chemicals, viral infection, inflammatory conditions such as rheumatoid arthritis, sciatica, and fibromyalgia, asthma, irritable bowel, colitis, tinnitus, migraines, nail biting, and autoimmune problems.

Typical of alternative medical treatments–they treat everything. Always a warning sign, if you ask me. It is interesting to me that autism is not specifically mentioned in the patent. There must be a reason for that.

Is this really new, or novel, as they say in the patent business? It seems that that there is already a patent on nasal sprays to administer Vitamin B12, Vitamin B12 nasal spray and method of use. Filed in 2006, and it mentions mB12.

There is a phrase in patent law: obviousness. Taking one invention, say, mB12 nasal spray, adding it to another supposed invention, treating certain disorders claimed to respond to mB12 is, well, obvious. As they say, anyone “skilled in the art” would put those together.

Even if this doesn’t meet the definition of non obvious, I still think this patent has little chance of success. Consider this paragraph from the US Patent office:

In order for an invention to be patentable it must be new as defined in the patent law, which provides that an invention cannot be patented if: “(a) the invention was known or used by others in this country, or patented or described in a printed publication in this or a foreign country, before the invention thereof by the applicant for patent,” or “(b) the invention was patented or described in a printed publication in this or a foreign country or in public use or on sale in this country more than one year prior to the application for patent in the United States . . .”

(emphasis mine)

Mr. Kurtz’ patent application was field March 17, 2008.

mB12 nasal sprays–as touted by Mr. Kurtz himself–have been discussed online since at least 2005. I guess Mr. Kurtz is counting on the patent examiner not checking the AutismOne website for Mr. Kurtz’ own talk on nasal spray mB12 in 2006. But, even without that, Mr. Kurtz’ own website has discussions of the nasal spray from March 16, 2006– that predates his patent application by 1 year. 1 year and 1 day. Ironic, that.

It will be interesting to see the lollipop patent application. I mean, there are vitamin B12 lollipops already, too. I wonder when Mr. Kurtz first publicly discussed his lollipop invention? Did he shoot himself in the foot here too?

Transition into adulthood – problems for autistics

20 Jun

The recent success of the Autism Bill is in part due to a decade of patient work by the All Party Parliamentary Group on Autism APPGA

is a formal cross-party backbench group of MPs and Peers who share an interest in autism and Asperger syndrome. It was set up in February 2000. Its role is to campaign in Parliament for greater awareness of autism and Asperger syndrome, and to lobby the Government for improved services for people with autism and Asperger syndrome, and their carers.

APPGA has just released an important report on Transition into Adulthood about that awkward period when young people with autism are coming to the end of their education and their parents are trying to obtain a package of suitable services to sustain them into adult life. The APPGA report lends support to the recent finding by the National Audit Office that services for autistic adults are in a parlous state. It should come as no surprise that the inadequacies of adult provision often result in an unsatisfactory transition.

At present all school children with a Statement of special educational need in England and Wales (there are parallel but differing arrangements in Scotland and Northern Ireland) are entitled to an annual review. At 14 years of age this becomes the Transition Review and it is the duty of the local authority to make arrangements for a smooth transition to adult services when the child leaves school. This works well enough for many pupils with severe learning difficulties who often stay at school until they are 19. Their transition to adult services comes at around the same time as they leave home and move to supported living in group homes or other residential settings and maybe employment or further education.

But most children leave school at 16 and adult services do not kick in until they are 18. Many children are left in limbo. Young people with autism, especially those without a Statement frequently lose out. If you have not got a Statement you do not get a transitional review. Even with a Statement things can still go wrong, especially for those in mainstream education. According to APPGA

Frequently, decisions about a young person’s next placement are made only when they are approaching the end of their schooling or, worse still, after they have left school. In the vast majority of cases where transition planning is taking place, it is happening without the involvement of adult social services. Contributors stressed how vital it is to address this. A recurrent theme was the mental health problems which developed, in part, as a result of these failures.

Other significant findings were that

  • Wrong expectations could derail the transition process. Low expectations became a self-fulfilling prophecy for some while unrealistic expectations placed on young people who lacked obvious cognitive impairments set them up to fail.
  • Inter-agency working could be a nightmare, especxially when no one agency took responsibility for leading the process.
  • Professionals lacked the necessary training in autism to inform their contribution to transition planning.
  • Parents and young people did not have adequate information about the available options.
  • Transition was often funding led. i.e it was a bureaucratic measure to allocate the budget and not a tool to identify the needs of young people.

    • APPGA’s recommendations will have no statutory power unless they are included in the statutory guidance that the government is planning to issue later this year. It is important that they make it into the guidance, especially as they independently reiterate many of the recommendations of the National Audit Office. So once more I urge readers in the UK to visit the NAS website and learn how you can contribute to the government consultation on adult services.

    Campaigning by the NAS and its allies is beginning to pay off after years of patient work offering detailed and practical ways forward for government and local councils to meet the challenge of autism. At last they are listening and seem to have the will to do something positive. Make sure you have your say and help to make it count.

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    Autism mum needs help of autism community – please help

    16 Jun

    I tweeted a few days ago about the awful thing that has happened to my friend Melissa, an American single mum with two sons of whom one is autistic. BUt nothing can say it as powerfully as her own words.

    Is where I am.
    To say I’m overwhelmed is an absolute understatement.

    My house burned down today.

    Yes, I’m serious.
    We’re fine- everyone made it out safe.
    But our cat did not make it.

    I don’t really even know what to write at the moment, other than my heart is breaking.
    You think you’re prepared for such things, “if ever there’s a fire, I’m grabbing this, this, and this,”
    Not so.
    We have our pajamas.
    I grabbed kids and ran like hell.

    On top of that, Companion’s car was engulfed in flames.
    My car literally exploded.
    Homeless and carless all in one night.

    We are currently at my parent’s.
    I will update when possible.

    Please keep us in your thoughts and prayers.

    I’ve set up a chipin widget (see right. IE6 users scroll down, sorry). This is linked directly to Melissa’s PayPal acct. Please contribute as much as you can. You do not need a paypal account to help.

    Melissa’s lads also wear clothes in the following sizes: 10/12 and 4T. I don;t know how to start getting things directly to her yet but please put anything you have to one side and I’ll return to this subject hen I know more.

    Please help. I’d really like to have Melissa get a sizeable amount of money from the autism community. This goes beyond any neurodiversity/vaccine/genetic research issue. Please help and please pass this on. Retweet if you’re a Twitter user and blog about it yourself if you’re a blogger.

    Thanks you in advance.

    Autism and gender identity

    16 Jun

    Two abstracts from IMFAR (the International Meeting for Autism Research) caught my eye as they discussed an area I haven’t seen discussed much (if at all): gender identity and autism.

    The 2008 paper was from the Autism Research Centre (ARC), R.M. Jones first author, and Simon Baron-Cohen‘s group:

    Female-to-male transsexuals and autistic traits.

    The second paper had first author I. L. J. Noens ( Katholieke Universiteit Leuven) with collaborators from the Netherlands.

    Co-Occurrence of Autism Spectrum Disorders in Individuals with Gender Dysphoria

    It isn’t surprising that the ARC paper was looking for support for the Extreme Male Brain theory of autism. They tested transsexuals, female-to-male and male-to-female, “typical” [edit: typical is their term in the abstract] males and females and people with Asperger syndrome. They used the Autism Quotient test. What they found was that male-to-female transexuals and “typical” males and females scored about the same. Female-to-male transexuals scored significantly higher than these groups in AQ, but significantly lower than people with Asperger syndrome. The concluding sentences in the abstract stated:

    We speculate that these biological females, being masculinized in their autistic traits, may have had difficulties socializing with a female peer group and therefore found it easier to identify with a male peer group. This research illustrates how carefully selected groups in the population (e.g., congenital adrenal hyperplasia) can inform the extreme male brain (EMB) theory of autism.

    I think this speculation is just that–speculation. I am not really comfortable with the speculation either. However, the idea of studying gender identity and autism stayed with me. So, I was very interested when I saw the abstract for the Noens study in the 2009 IMFAR abstracts.

    Noens et al. took a different approach. They tested people for autism who were referred to the Amsterdam Gender Identity Clinic.

    From April 2004 to December 2007, all children and adolescents referred to the Amsterdam Gender Identity Clinic were screened for ASD features.

    Their preliminary results?

    Preliminary results indicate that at least 6 % of the 233 referred children and adolescents has an ASD. This percentage remains almost the same for the referrals with a confirmed Gender Idenity Disorder (GID) or Gender Identity Disorder-Not Otherwise Specified (GID-NOS) diagnosis. The group of individuals with ASD and GID (seven adults included) is heterogeneous in various respects: sex (both male and female), GID classification (GID, GID-NOS, transvestic fetishism), ASD classification (AD, Asperger syndrome, PDD-NOS), age of onset of GID (before or after puberty), and developmental trajectory (cross-sex behavior temporary or persistent).

    Pretty interesting, if you ask me. 6% of people referred to the clinic had an ASD. Unlike the results from the ARC group, there appears to be similarity in the male and female subgroups.

    6%–about 6x the prevalence of autism in the general public. That is worth following up on.

    There is, of course, another study one could consider: how many people with ASD’s have GID’s?

    Note: I hope I have treated gender identity with respect. If I have made any disrepectful comments, I would welcome suggestions for correction.

    Another look at the citalopram trial

    16 Jun

    A recent study shows that Citalopram doesn’t control repetitive behaviors in people with Autism Spectrum Disorders. The failure of a drug trial usually leads to harsh criticism of the medical establishment from the biomedical community, but I haven’t seen much so far. Instead, Kev has already discussed this and made his opinion crystal clear. (As an aside–anyone who thinks bloggers here are somehow paid by pharmaceutical companies may want to read Kev’s post.)

    The bottom line of the study was plain: citalopram doesn’t reduce repetitive behaviors in children with autism. Or, as Kev put it:

    What the hell did they expect it to do? They expected it to reduce repetitive behaviours.

    Seriously.

    They put these kids on heavy duty SSRI’s because they flapped their hands and rocked back and forth. Excuse me for being a little rude here but so fucking what?

    There is a good discussion of whether there is value in controlling repetitive behaviors in autistics in the comments to Kev’s post.

    I had a different perspective on this–why did they expect citalopram to reduce repetitive behavior? The quoted rationale is that it works for obsessive compulsive disorder. I haven’t seen that many people with OCD, but repetitive behaviors in autism don’t seem all that similar to OCD traits to me.

    On the other side of the question, repetitive behaviors are a measurable outcome. This may give some value to repetitive behaviors as a measure of success for autism treatments. This is something often missing from autism treatment trials–a clear, measurable outcome.

    That aside, what else can we learn from this trial? The big answer: the placebo effect is alive and well. Consider this from the abstract:

    There was no significant difference in the rate of positive response on the Clinical Global Impressions, Improvement subscale between the citalopram-treated group (32.9%) and the placebo group (34.2%)

    Both the treatment group and the placebo group saw about 30% of the subjects improve. This was for a relatively short, 12 week, trial.

    Citalopram has been used off-label for treatment on autistics for some time. I’ll admit that I was not aware of this, even though there are claims that a huge proportion of children with autism are on citalopram. The reason it is used–doctors believe it works.

    The study authors expected there to be benefit for some subgroup:

    “We didn’t expect it to work for everyone, but we were hoping that we’d be able to drill down into the population for whom it was very helpful and begin to identify the predictor of what a positive response would be,” he [Dr. Bryan King] said.

    This part speaks well of Dr. King (at least to me). He went into this study with expectations of benefit. When the data said otherwise, he went with the data.

    We need good trails of autism treatments. It is very easy for doctors and patients to believe there is benefit.

    Does this trial mean that citalopram will be relegated to the dust heap of autism treatments? I somehow doubt it. Here is a quote from Dr. Andrew Zimmerman of the Kennedy Krieger Institute:

    Zimmerman, the Baltimore autism specialist, said he’s successfully treated younger autistic children, ages 3 to 5, with the drug. He added that he uses smaller doses, which appear to not create as many side effects.

    “If you start at a very low dose and build it up slowly, you see improvements in mood and decreases in repetitive behaviors,” he said. “The kids are more attentive.”

    No, citalopram is not going away anytime soon.

    Jake Crosby’s great big straw man

    10 Jun

    I’ve said it before—a blogger could spend his entire online time debunking blog posts from the Age of Autism. Between the pseudoscience and the bad policy promoted on that site, it is draining to just read it on a regular basis, much less respond. A few weeks ago a particularly bad post came through and I wanted to respond but, frankly, I just didn’t have time. The post was by Jake Crosby about a (then) upcoming article in Newsweek about Ari Ne’eman.

    It is no secret to people who read this blog that I admire Mr. Ne’eman. A rough analogy is that Ari Ne’eman is to autism advocacy what David Mandell is (in my mind) to autism science: a person who is asking the right questions and staying above the vaccine debates. Mr. Ne’eman founded the Autistic Self Advocacy Network (ASAN).

    It really is worth taking a few minutes to read the Newsweek article. I read it online, read Kev’s blog post, and then stumbled upon it in my doctor’s office last Friday.

    Erasing Autism

    Scientists are closing in on the genes linked to autism. So why is Ari Ne’eman so worried?

    Since I am discussing Mr. Crosby’s blog post, you should read that as well. The history leading to that post is somewhat sad. A reliable source I know says that prior to the publication of the Newsweek article, Stephen Shore leaked the information. This led to a blog post by John Best, including death threats. Jake Crosby at the Age of Autism decided to blog his own misconceptions about it. Here’s one bit of advice for Mr. Crosby: when you are pickup up stories from John Best, fired Generation Rescue “Rescue Angel”, you are putting yourself in really bad company**. I am sure Mr. Shore did not intend to precipitate a blog post by John Best. At the same time, I hope Mr. Shore is somewhat chagrined to realize that this happened.

    Mr. Crosby’s blog piece had a fairly simple theme: “don’t publish the Ari Ne’eman article; interview me instead”. Or, failing that, “Give me equal time”. We all knew (and I assume Mr. Crosby is intelligent enough to know as well) that his was an empty commentary: the article was already in press. There was no way to either pull it or to add Mr. Crosby’s comments*. But, it makes good blog fodder and may get Mr. Crosby’s foot in the door for future articles by Newsweek. Somehow I doubt Newsweek is impressed by strawman arguments, but, who knows, Mr. Crosby might appear on their radar now.

    Let’s do what Mr. Crosby didn’t do. Let’s really look at what is being said and done by Mr. Crosby, Mr. Ne’eman, ASAN, Newsweek…you know, let’s discuss some facts.

    Mr. Crosby has taken on one of the Age of Autism’s favorite tactics: the “straw man argument”. He pretends that Ari Ne’eman promotes the idea that autism is not a disability. There is a common tactic amongst those who dislike Neurodiversity: try to define it to be something it isn’t. I understand the motivation: it is really hard to go out in public as an autistic or the parent of an autistic and say “I am against a movement that thinks autistics deserve civil rights”. But, they people try this argument all the time. Case in point, Mr. Crosby’s blog post:

    Neurodiversity is an ideology supported primarily by some autistic individuals and parents who do not believe that autism is a disability, and opposes any potential cure.

    The statement was clearly false when Mr. Crosby wrote it. Mr. Ne’eman clearly considers autism to be a disability. I hope that Mr. Crosby was duly embarrassed when the Newsweek article was published, including a simple statement outlining Mr. Ne’eman’s position on the autism spectrum:

    It’s a disability, yes, but it’s also a different way of being, and “neurodiversity” should be accepted by society. Autistic people (he prefers this wording to “people with autism,” a term many parents use, because he considers the condition intrinsic to a person’s makeup) must be accommodated in the classroom and workplace and helped to live independently as adults—and he is pushing to make this happen for everyone on the spectrum. They should also be listened to.

    See what I mean? I find it amazing that a person with an ASD like Mr. Crosby could be against accommodations, independent living, and acceptance as people. So, rather than address this issue head on, he builds his straw man.

    The real argument, we all know, is about the “cure” question. Mr. Ne’eman believes that Autistics should be allowed to say, “I don’t want a cure” and “please respect me as for who I am: autistic.” For those using pity politics to promote a cure agenda, people like Mr. Ne’eman are very tough obstacle to overcome. Case in point, a quote from the Newsweek article:

    “There’s a misperception that autism is some thief in the night that takes a normal child and places an autistic child in its place,” he says. “That’s not true.”

    Mr. Crosby has cast his lot with the pity-politics groups represented at the Age of Autism blog. That’s fine, it is his right. He is even within his rights to misrepresent other people and organizations in order to further his own ideology. I don’t think it is a good idea, or that it makes sense, but it is his right.

    Mr. Crosby makes a number of completely unsupported assertions.

    Yet, it appears there has been a mainstream media blackout on those of us within the community who publicly disagree with that point of view.

    When I first read “Media blackout” all I could think was: do a Google news search for Jenny McCarthy and for Ari Ne’eman and get back to me on that one, would you Mr. Crosby? But, Mr. Crosby is lamenting the fact that autistic voices that dissent with Mr. Ne’eman are not heard. Well, perhaps that would change if, say, Generation Rescue or any of the other organizations who sponsor Mr. Crosby’s blog writing would put autistic people in prominent positions? Isn’t it ironic that this is exactly the sort of thing ASAN is promoting? Nothing about us without us. If Generation Rescue would listen to ASAN, perhaps Jake Crosby would have his platform. Instead, he supports groups that have no autistic representation.

    Mr. Crosby uses another common Age of Autism tactic: use every chance possible to promote the “epidemic”. He argues against the “epidemic denialists” who don’t agree with the mercury-autism hypothesis. One thing I admire about Mr. Ne’eman is that he doesn’t spend much (if any) time on the “epidemic” and, instead, fights for the rights of people with disabilities.

    Jake Crosby has to dig deep in order to find reasons to criticize Ari Ne’eman. Case in point, from a second blog piece by Mr. Crosby:

    Then the Ari Ne’eman piece ran online a week later and then in the May 25th issue, where he professed his anti-cure views while expressing an unfounded fear of the unproven idea that autism can be prevented through eugenics.

    Mr. Crosby plainly gets it wrong. The argument isn’t that autism can be prevented through eugenics. The argument is that with a good genetic test, one might in the future prevent autism through eugenics.

    If one can find anything amusing about eugenics discussions, it might be this: Jake Crosby disagrees with JB Handley…and JB Handley agrees with Ari Ne’eman. You see, JB Handley has also raised the worry about genetic testing leading to a form of eugenics in a piece Autism Speaks: The Abortion Industry’s Best Friend.

    Mr. Crosby closed his first blog post with this lament:

    Unfortunately, I have not been as active as I would have liked since I am in college and just declared my major in history

    Let me just point a few things out to Mr. Crosby: While an undergraduate, Ari Ne’eman has founded ASAN, worked in numerous states on bullying issues, special education reform, assisted living supports, issues for adults with autism and he was instrumental in getting the “Ransom Notes” ad campaign pulled. Mr. Ne’eman works with other disability groups to give advice to the federal government at high levels.

    I don’t think he got where he is by making obvious staw man arguments about people he disagrees with.

    Perhaps that is why Newsweek wants to talk to Ari Ne’eman and people like Mr. Crosby and myself are just blogging.

    *Mr. Crosby has noted that he did not know that it would be difficult or impossible to pull or change an existing story. He also did not know beyond a vague “couple of weeks” how soon the article would be published.

    **Mr Crosby states that his information did not come through John Best. I take him at his word and appreciate the fact that he doesn’t want to be associated with Mr. Best.

    Auditing Autism in the UK

    9 Jun

    The National Audit Office investigates and reports upon the value for money that the British taxpayer gets from our government’s expenditure. They claim to be doing a good job. For every pound the NAO spends it says it saves the government another nine pounds. We will have to take their word for that.

    The NAO have recently turned their attention to autism with a report, “Supporting people with autism through adulthood.” In a welcome move towards inclusion the NAO have produced a video illustrating the themes covered in this report and an easy read version as well. To judge from this report it would appear that the high costs to society associated with autism that are claimed by some researchers do not represent the true cost of autism at all. Lifetime costs running into millions of pounds per person and annual costs to the economy in excess of £28 billion a year are sometimes used to argue for drastic measures for prevention and cure. In the past I have questioned the assumptions behind those calculations. But the NAO starts by accepting those figures and then raises some interesting questions.

    1. How much of the expenditure on services is crisis management for individuals who are not provided with a basic level of support? How much would be saved if more cost effective supports were in place that obviated the need for expensive emergency interventions when things go pear shaped?
    2. How much of the existing support represents money well spent and how much is wasted on ineffective strategies that are followed because there is nothing else available?
    3. How many adults are deemed ineligible for services because the criteria are too narrow and do not take account of the need of those with Asperger syndrome or high functioning autism?

    They identify two key weaknesses at present. There is a lack of data to inform strategic planning for autism specific services at all levels of government. So three quarters of local authorities do not have a specific commissioning strategy for autistic adults. There is a lack of knowledge and understanding of autism amongst frontline workers. Four out of five family doctors want more guidance in order to give a proper service to people with autism. Two hundred out of five hundred disability employment advisors have had no training in autism.

    This last point is crucially important. It is unrealistic to expect autism specific services for every autistic adult. Most people, if they were helped with work and housing, could probably manage quite well most of the time. But when they do need support they should be able to turn to generic services that are autism friendly.

    But autism friendly services do not just happen. They have to be part of the government’s strategy, supported by statutory guidance and resources for training. Autism specific services will also be needed. The NAO estimates that it would cost £40 million to provide specialised health and social care teams across the whole of England. But if these services were used to help people into paid employment and other forms of independent living they would actually save money.

    1. They would only have to reach four percent of autistic adults to break even.
    2. Reaching six percent could save £38 million a year.
    3. Reaching eight percent could save £67 million a year.

    The NAO report is not just about saving money. It is about spending money effectively. They suggest that even a zero cost saving is OK if what is spent actually delivers improvements for service users. But they also point out that savings can be made by making timely and effective provision available. This report is an important tool in our campaign to influence government strategy during the period of public consultation ahead.

    As Mark Lever, NAS chief executive said:

    “In the current economic climate the Government cannot possibly ignore the huge potential cost savings and benefits identified by Parliament’s spending watchdog, of providing adults with autism with the right support at the right time. Neither the Government, people with autism nor the taxpayer are getting value for money from existing autism services and support, leaving those affected by the condition feeling isolated, ignored and often at breaking point. This is simply unacceptable.
    Real savings will only be made if all Government departments work together to address the gaps in understanding and specialist support, enabling people with autism to lead more independent lives. We are, therefore, calling on the Government to ensure the NAOs critically important findings are reflected in the forthcoming adult autism strategy.”

    What I really like about this report is its practical approach. There are no grand schemes, no injunctions to Defeat Autism Now or at least within the next five years. Instead they propose relatively modest changes to the way we plan and organize delivery of key services that take account of the needs of autistic adults. If this report is implemented it should save the government a small amount of money but it will save autistic people from a lot of the unnecessary grief they encounter with the present system.

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    Citalopram no good for autism

    8 Jun

    An interesting study for me personally as it involves a crazymed I’m familiar with – Citalopram (the generic name) brand name Celexa in the US and Cipramil over here in Blighty.

    Citalopram is an anti-depressant of the class SSRI which means ‘selective serotonin reuptake inhibitors’. In plain english an SSRI based crazymed stops serotonin being reuptaken and therefore your neurons wallow for longer in it. This is, apparently, good. Why? I don’t know, I am not a scientist, I am a user 🙂 Well, I’m not anymore, I take a different sort of anti-depressant crazymed called Venfalaxine which is an SNRI. I don’t know how that works either but it does and thats good enough for me. Hopefully it has plenty of formaldehyde and monkey kidneys in it.

    Anyway, I had no idea that Citalopram was used off-label for autism and when I heard about this study my first thoughts were ‘what the hell did they expect it to do?’ Shortly followed by ‘Citalopram is some serious shit’.

    What the hell did they expect it to do? They expected it to reduce repetitive behaviours.

    Seriously.

    They put these kids on heavy duty SSRI’s because they flapped their hands and rocked back and forth. Excuse me for being a little rude here but so fucking what?

    Apparently

    Side effects were more common in the children taking Celexa, the researchers found. Those on Celexa were more likely to have increased energy levels, impulsiveness, decreased concentration, hyperactivity, mechanical repetition of the same movement or posture, and sleep problems.

    Oh wait, all the symptoms of the beginnings of what to me sounds like hypomania. Which is (gasp!) a side-effect of most if not all SSRI’s.

    Because they flapped and rocked and swayed and liked routine. Good call.

    “A medication that we thought would be helpful for these repetitive behaviors was no better than placebo,” he [Bryan H. King] says. “That calls into question how or if we should use [Celexa] or even related medications for this purpose.

    Yeah? Does it? How about we call into question the necessity of drugging the shit out of a kid because s/he likes to rock and flap?

    I have to wonder, I really do. How the hell did this study – which to me sounds more like torture – ever get past an IRB?

    Apologies for the rant but this is appalling to me.

    A vaccinated vs unvaccinated study

    6 Jun

    For as long as I can recall, this has been one of the clarion calls of the autism/antivaccine/pro-disease groups – that the only way to know if vaccines cause autism is to do a ‘simple’ study of vaccinated vs unvaccinated populations. Indeed, Generation Rescue carried out an ill-fated phone survey that in reality meant absolutely nothing so badly was it put together and carried out. But even if it _had_ been well designed and carried out the results were not good for pro-disease anti-vaccine autism believers:

    Number of boys and girls with Aspergers
    Unvaccinated: 1% of total
    Partially vaccinated: 2% of total
    Fully vaccinated: 1%
    Fully and Partially combined: 2%

    Conclusion: you are 1% more likely to have Aspergers if you have been partially vaccinated than unvaccinated. If you are fully vaccinated your chance of being Aspergers is no greater than if you were unvaccinated.

    Number of boys and girls with PDDNOS
    Unvaccinated: 2% of total
    Partially vaccinated: 2% of total
    Fully vaccinated: 1%
    Fully and Partially combined: 1%

    Conclusion: you are 1% more likely to have PDDNOS if you are unvaccinated. If you are fully vaccinated your chance of being PDDNOS is 1% less than if you were unvaccinated.

    Number of boys and girls with Autism
    Unvaccinated: 2% of total
    Partially vaccinated: 4% of total
    Fully vaccinated: 2%
    Fully and Partially combined: 2%

    Conclusion: you are 2% more likely to have autism if you have been partially vaccinated. If you are fully vaccinated your chance of being autistic is no greater than if you were unvaccinated.

    Number of boys and girls with all ASD’s
    Unvaccinated: 4% of total
    Partially vaccinated: 6% of total
    Fully vaccinated: 3%
    Fully and Partially combined: 3%

    Conclusion: you are 2% more likely to have an ASD if you have been partially vaccinated. If you are fully vaccinated your chance of being autistic is 1% less than if you were unvaccinated.

    Overall conclusion: the best way to avoid being diagnosed with an ASD is to be fully vaccinated according to the CDC schedule.

    And in September of last year, you may recall the announcement of yet another study that demonstrated there was no link between MMR and autism. During the press conference that launched that study David Kirby asked the lead author – Ian Lipkin – what his thoughts were about a vaccinated vs unvaccinated study. His answer was:

    http://webjay.org/flash/dark_player

    Very difficult if not impossible.

    Given that, the US NVAC vaccine safety group released a draft of their latest thinking on the issue of vaccine safety which touched on the idea of doing this sort of study. The entire section related to this is quoted in full below:

    Feasibility study of Vaccinated/Unvaccinated/Alternatively Vaccinated Children

    Members of the public, stakeholders, and the Interagency Autism Coordinating Committee (IACC) have articulated interest in a study of vaccinated vs. unvaccinated children to determine if there are differences in health outcomes between groups with varying exposures to vaccines. The Working Group considered drafting a recommendation for an IOM review of the science, epidemiology and feasibility of studies of unvaccinated, vaccine delayed, and vaccinated children. The Writing Group Draft Document on Gaps in Research Agenda further developed this idea. The Working Group wishes to clarify several points on this topic. *First, the Working Group believes that the strongest study design, a randomized clinical trial that includes a study arm receiving no vaccine or vaccine not given in accord with the current recommended schedule, is not ethical, would not pass IRB review, and cannot be done*. The type of study that is being suggested would be an observational study of populations looking at natural variation in vaccination schedules including some children where vaccination is declined through parental intent. All children in the study should be recommended to receive the standard immunization schedule. The Working Group endorses the Writing Group’s recommendation for an external expert committee, such as the Institute of Medicine, with broad methodological, design, and ethical expertise to consider “strengths and weaknesses, ethical issues and feasibility including timelines and cost of various study designs to examine outcomes in unvaccinated, vaccine delayed and vaccinated children and report back to the NVAC.”

    The Working Group does not necessarily agree with all of the language in the Writing Group’s statement, but with its general intent. The process should be open and transparent, engaging individuals from a broad range of sectors. Considerations as outlined by the Writing Group and modified by the Working Group are as follows:

    – This review should consider strengths and weaknesses, ethical issues and feasibility including timelines and cost of various study designs and report back to the NVAC

    – Consideration should be given to broad biomedical research including laboratory studies, and animal studies.

    – Consideration should also be given to study designs comparing children vaccinated by the standard immunization schedule with unvaccinated children (by parental intention), and possibly partially vaccinated children or children vaccinated by alternative immunization schedules

    – Outcomes to assess include biomarkers of immunity and metabolic dysfunction, and outcomes including but not limited to neurodevelopmental outcomes, allergies, asthma, immune-mediated diseases, and other developmental disabilities such as epilepsy, intellectual disability and learning disabilities.

    – The inclusion of autism as an outcome is desired. This review should also consider what impact the inclusion of Autism Spectrum Disorders (ASD) as an outcome would have on study designs and feasibility, as referenced in the IACC letter to NVAC.

    – This review should be conducted expeditiously, in a transparent manner, and involving broad public and stakeholder input.

    So, as per a straight ‘vaccinated vs unvaccinated’ study, Ian Lipkin and NVAC Working Group agree that it can’t be done in the most scientifically accurate way and even if it could, it wouldn’t be ethical due to the requirement of excluding children from vaccination.

    What they are saying is that a group like the IOM therefore should write up a feasibility study as to how such a study _could_ be done. Without this, its extremely unlikely that a vax vs unvax study will ever fly.

    Amusingly, the way that the NVAC Working Group words a possible solution – vaccinated vs unvaccinated via parental choice – sounds pretty much like the Generation Rescue phone survey. And we know how that ended up.

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