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A Neurodiversity FAQ

17 May

Following Ari Ne’eman’s interview in Newsweek being published yesterday, a storm of blog posts about him, autism and neurodiversity in general have appeared. There is a series of comments on the Newsweek forum featuring that bastion of idiocy and bigotry, John Best and sadly, even someone I respect a great deal, Jonathan Mitchell, has stooped to equating autism with sexual abusers. With that in mind, I want to re-post (with slight edits) an old post of mine about what I see neurodiversity as.

Proviso: I am not a spokesperson for any other person and/or group. The term ‘neurodiversity’ did not originate with me. What follows is my personal opinion and what I believe the concept of neurodiversity represents. I believe I voice opinions common to many in the neurodiversity group but I may well be wrong. Sometimes I refer to ‘we’ and sometimes ‘I’. When I refer to ‘we’ I think I am repeating the consensus of neurodiversitiy opinion but bear in mind I could well be wrong.

*1) Neurodiversity proponents are anti-parent.*

False. I’m a parent. I’m parent to 3 kids of whom two are NT and one is autistic. I’ve never felt anyone in the ‘neurodiversity crowd’ is anti me. Kathleen Seidel is a parent. Camille Clark is a parent. Anne Bevington is a parent.

*2) AutAdvo makes up the entire population of Neurodiversity proponents.*

False. There are literally hundreds of websites with thousands of participating autistics of all ‘levels’. The vast majority advocate acceptance. There are also a very large number of NT parents who advocate Neurodiversity. The desire to ‘cure at all costs’ autism is heavily weighted towards North America.

*3) Neurodiversity proponents say we should not treat our kids.*

False. This is one of the biggest points of contention. The issue is one of autism (the main point) versus comorbidities (side points). See the WikiPedia definition of comorbidity. What are some comorbidities? Gastric problems, ADHD, ADD, Depression, migrane. Why would you imagine we don’t want you to treat these things? These things are not autism. They are comorbidities of autism. They cannot be used to illustrate or define autism as they are not common to every autistic.

Don’t take my word for it. Go ask the Doctor who diagnosed your child.

We see your error as the failure to differentiate between the comorbidity and the autism. To us, one is treatable. The other is not. We do not fight for your child’s right to have gastric issues.

You see our error as trying to prevent your child being treated. My own daughter receives PECS and Speech Therapy. I would not stand in any parents way who wanted to alleviate the suffering of their kids. Having terrible constipation is suffering. Having a different kind of thought process is not.

*4) Neurodiversity proponents who are autistic are different than my child.*

True. They are mostly adults. Your kids are kids. However I don’t think thats your point. You believe that all autistic Neurodiversity proponents are ‘high functioning’. This is untrue, both now and historically. The facts are that for a lot of the autistic adults in the Neurodiversity movement their diagnosis was ‘low functioning’ when they were kids. But people grow and progress. Autism doesn’t stop progress, it just sets a different timetable for it. These adults are living breathing proof.

*5) Neurodiversity proponents are full of hate.*

I was bemused to read posts that castigated us for hate speech. Here’s an excerpt from an email I was sent in the year 2005 from someone who hid their identity. This person (who had a Bellsouth IP address) had an in-depth knowledge of Evidence of Harm and although they never said so, that they came from EoH is beyond doubt – I received this email to my Yahoo spam account immediately after making a few posts myself on EoH.

Your retard daughter should just be fucking put down – shes no autist. Little bitch.

And racism? A member of Generation Rescue (or so they claimed) told me to:

…sit next to the nearest Arab with a backpack.

Alluding, of course, to the recent London suicide bombings, this person makes racist generalisations about Arabs as well as wishing death on me.

Ex-Generation Rescue Rescue Angel John Best Jr [John has pointed out that he is now no longer a member of GR] has said that all parents of autistics who don’t chelate their kids are child abusers. Lujene Clarke of NoMercury told me that I was mentally ill because I said I had autistic relatives. My EoH debut was preceded by EoH list members referring to me as an idiot. I’ve been told I’m in the pay of Pharma companies, that I’m stupid, that I’ll go to Hell, that I’m in denial. My autistic friends have been told they are sociopathic, that they have personality disorders, that they aren’t really autistic.

*6) Neurodiversity proponents say we don’t love our kids or want whats best for them.*

False. I have no doubt that you all love your kids just as much as I love mine. I’ve not seen any neurodiversity proponent claim you hate your kids.

What we say is that we think your love for your kids has blinded you to the reality that autism itself is not a problem to overcome but a reality to share with your child. We think that in your honest desire to do the best for your child you are desperate to treat the wrong thing. We also feel that some of the things you use to treat your kids are dangerous. I’ve recently read a post by a woman enquiring about treating her child with Hydrochloric Acid. I’m on record as saying that its no-ones place to tell others what they can and cannot do to treat their kids but by that same token, I feel obliged to point the very real dangers to both your children’s health, your own bank balance and the very future of autism treatment research.

I believe the world should change for the good of my (and yours) child. I don’t believe my child should meekly inherit the mantle of ‘second class citizen’. I see it as part of my job to fight for her right to get the help she needs and at the same time, be who she is.

There are so many better fights than this one you’re on. Better education, better care, better interventions, more rights, more respect. These are the things your child (and mine) will need as they continue to grow.

We’d like you to respect your child’s autism as something unique. We’d like you to treat your child with the medical interventions for their comorbidities that they may need to progress. We’d like you to realise that your children will grow up and if they were autistic then they still will be. We’d like you to think about the strong possibility that one day the autistic adults on AutAdvo might be your kids and another set of parents who believe something passionately will be insulting them by denigrating their worth and their neurology.

You believe thiomersal did your kids harm. You may be right. I doubt it, but you may be. What it definitely didn’t do though is cause autism. This is at the heart of what makes some of us angry in respect of this issue – treat your kids if they are mercury poisoned but please stop propagating so much negative stigma with constant references to autism being mercury poisoning.

*7) So why do neurodiversity proponents say they speak for my child?*

The way I see it is like this – I and my wife know our daughter better than anyone else alive. Whilst she is a child, we speak for her in all matters. But the fact is that she is autistic. It therefore is simple common sense that other autistics have thought processes closer to those of my daughter than any NT does. They think in similar ways. Its not a case of speaking *for*, its more like having a shared reality. If one or more of my kids were gay than I would still speak for them in all matters whilst they were children but not being gay I could not share that reality in the same way as other gay people could. By virtue of their shared reality of autism our kids and autistic adults share an area of being that NT parents can never share. Like it or not, that does give them a commonality and communal existence. With that community sometimes comes a voice. Can you really say, as NT parents, that you are closer in thought process to your kids than autistic adults? When it comes to what makes autistics tick can you really say that you as NT’s know better than other autistics?

Ari Ne’eman on autism

16 May

Ari has had a quite wonderful piece on him in Newsweek. It takes on the hard questions for Ari and he answers them with the aplomb that has come from years of hard work of learning to be an excellent networker:

Ne’eman battles a strange kind of image problem: his critics accuse him of not really being autistic. His mother, Rina, is particularly sensitive about this. “People who see Ari today have no idea where he’s been,” she says. As a young child, Ne’eman was verbally precocious but socially challenged. “I didn’t understand the people around me, and they didn’t understand me,” he says. He was bullied and ostracized—back then he didn’t look at people; he flapped his hands and paced incessantly (he still does both today); he brought newspapers to elementary school as leisure reading. “I think the word ‘freak’ may have come up,” he says. He was, at one point, segregated from his peers in a special-ed school. That led to struggles with depression and anxiety so severe he would pick at his face until it bled. I asked Ne’eman how he manages all the professional mingling he does today. Small talk makes him uncomfortable, but he’s learned to play along. Still, none of it is easy. “You come out of a meeting and you’ve put on a mask, which involves looking people in the eye, using certain mannerisms, certain phrases,” he says. “Even if you learn to do it in a very seamless sort of way, you’re still putting on an act. It’s a very ex-hausting act.”

This is a common attack tactic from people like Jake Crosy at AoA or Harold Doherty. They demean the efforts that autistic people such as Ari have needed and still need to put into their lives to advocate for their own beliefs in favour of the promotion of their own limited and limiting set of autism related beliefs. But as history has shown, its people like Ari – those who are willing to be openly challenged about what they think who will win the respect of people.

Well done Ari, I’m proud to think that you are representing all manner of people on the spectrum, from the very high functioning Jake Crosby to the very low functioning such as my daughter. Thank you.

Autism Science Foundation

20 Apr

There’s a new autism research organisation in town – the Autism Science Foundation.

The Autism Science Foundation’s mission is to support autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research. The organization will also provide information about autism to the general public and will serve to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism.

You might expect me to have mixed opinions regarding this organisation and that is the case. On one hand, the are very very positively consigning the autism/vaccine episode to the scientific dustbin where it belongs.

Vaccines save lives; they do not cause autism. Numerous studies have failed to show a causal link between vaccines and autism. Vaccine safety research should continue to be conducted by the public health system in order to ensure vaccine safety and maintain confidence in our national vaccine program, but further investment of limited autism research dollars is not warranted at this time.

Two thumbs up to that. My own opinion is that it is not just a waste of research dollars it is also an insulting slur to autistic people to be denigrated as ‘poisoned’ in some way.

So thats the good. And that bad? Well, consider this:

Autism Spectrum Disorders are characterized by significant impairments in social interaction and communication skills, as well as by the presence of extremely challenging behaviors. Such behaviors include stereotyped motor behaviors (hand flapping, body rocking)

I don’t consider hand flapping or body rocking to be ‘extremely challenging behaviours’. I consider them to be the typical movements of an autistic person either communicating or adjusting to an environment or both. I have never challenged my own autistic child’s hand flapping or body rocking and never will.

Moving on, who is on this Foundation? Firstly and most familiar to me is Paul Offit. I think this is an *excellent* start. Karen Margulis London I know next to nothing about. Same with Michael Lewis. That leaves one other.

As we all know Alison Tepper Singer left Autism Speaks earlier this year due to its anti-vaccination leanings. As we _also_ all know, prior to that she was best known to the autism community as one of the central figures in the very unfortunate ‘Autism Every Day’ video.

Ms Tepper-Singer and I have been communicating via Facebook for the last few weeks. The ‘Autism Every Day’ video has been discussed as well as a few other things. I also discussed this with a few close friends (some autistic, some not).

In the interest of totally coming clean, I’d like to therefore say that we have been talking about the ASF for a few days. I have made clear to Ms Tepper-Singer that my clear priority is the friendships I have and community I am part of. The website is very new and therefore the language on it could be very much better and should be for example. This is one case of where I would very much like to see more respectful and accurate language being used.

But overall, I would like to see an autistic person in at least the same position as I am – advising. I was therefore very heartened to learn that that is already the case. I don’t think it would be fair for me to name that person and I will ask that if anyone does know then please do _not_ name them in the comments or elsewhere. I see forced ‘outing’ as akin to bullying so please refrain.

This is going to be a surprise for a lot of people I guess. The man who created the petition that has gained nearly 2000 signatures speaking clearly against Autism Speaks, ‘Autism Every Day’ and Alison Tepper-Singer in particular colluding with that same Alison Tepper-Singer.

All I can tell you is why I am doing this. I am doing it because I think that to have someone(s) on the inside is much more productive than being on the outside. This community has been passed over time and again and now we have a legitimate organisation that I believe _wants_ to learn to do the right thing fulfilling the mantra of ‘nothing about us without us’ and doing it in a way that is dedicated to good science, not harmful and costly quackery.

Could I be wrong? Of course I could. And if I am then I will step back and not participate. But I think that the only we way we can achieve our goals is to take chances now and then. I will be utterly transparent and as I have told Ms Tepper-Singer no doubt I and the other adviser(s) will have plenty to say. And if things do not work out then the onus falls on me to explain myself and me alone. There will be no comeback on the neurodiversity community.

Autism and Murder

18 Mar

Two stories recently made a splash in the autism community. In the first:

An 18-year-old man described as “severely autistic” is in custody on suspicion he murdered a 59-year-old Coos County woman…

and in the second:

A judge has ruled that Asperger’s syndrome cannot be used by the defense in the case of a man accused or murdering a woman after he lured her to his home in Savage in October 2007.

Three blogs carried this story, each revealing their owners particular viewpoints. In his small circulation blog, Harold Doherty said:

In recent days and weeks two severely autistic young men have been implicated in homicides. In one case, a young man with autism has been implicated in the death of his mother who publicly professed her deep love for her son and the joy that he brought to her….Neurodiversity ideologues are unlikely to change. Their views are entrenched and tied to their own public careers as professional “autistics” or “enlightened” autism parents. The truth is that they discourage society from addressing the harsher realities of autism by effective therapy, treatment or cure. They help keep members of the public from understanding the full nature of autism, particularly as it affects the most severely autistic. Theirs is a movement whose aim is to keep everyone from facing autism reality. Theirs is a movement which wants society to keep our heads in the sand and ignore autism reality.

And on their advert covered anti vaccination site, Age of Autism said:

How many stories of violent deaths allegedly at the hands of autistic teen males will we have to read before the world either A) embraces treatment for autism as a medical ailment or B) paints all autistic males as dangerous killers and locks them away a la 1955?

So you can see that Harold uses these deaths to say how silly neurodiversity is and AoA use them to say that treatment for autism is the only valid option before society is overrun with autistic killers.

Both viewpoints are pretty ridiculous. Harold builds up the idea that members of neurodiversity don’t like to talk about the bad things autism can bring. This is patently untrue as just a fairly random peruse around Autism Hub blogs would reveal. In fact, what neurodiversity bloggers tend to talk about are the good things and the bad. A quick example from Niksmom for example. The thing is that for parents on the Autism Hub who talk openly about their kids, they easily mix the good and the bad. Amanda Baggs, an autistic person, talks about some of the bad things that can happen to autistic people often. What Harold finds offensive is that we talk about the good things *at all* . I have no idea why.

And of course, on AoA they are desperate to link everything together with treatment. To make sure that *every aspect* of autism is seen as medical and to encourage biomedical treatment of those issues. A simple look at the advert-riddled blog that they have become is evidence of that. NB – I’m not knocking ads on websites at all but six image and text ads and five ‘sponsors’ is a little bit too much.

But then the third blog I’m talking about is Lisa Jo Rudy’s where she asks carefully and thoughtfully about how we can make sure that autism is _accurately_ reported on and presented to the world?

How can we battle the anxiety felt around the “autism spectrum” diagnosis? How can we present the face of autism accurately, without raising the specter of violence? What are your thoughts on this thorny issue?

Note the lack of appeal to fear (cure ’em or they’ll kill us!!) or appeal to fallacy (the evil ND’s are brainwashing the world!!) that AoA and Harold feel compelled to perpetuate. In fact the only quibble I’d have with Lisa Jo’s piece is the emphasis she places solely on children. However as someone writing from the POV of a parent maybe this is understandable.

In my opinion, the answer to Lisa Jo’s question – how do we get accurate information out about autism? – can be answered in some part by science.

I found it quite difficult to get ahold of papers about autism and death attributed to an autistic person. But the few that I did get access to point to quite a different direction than the overly bleak and purposefully twisted futures foreseen by Harold Doherty and AoA.

In this study, the authors looked at rates of criminality amongst those with a Pervasive Developmental Disability (subgrouped to ‘childhood autism’, atypical autism and AS) . In the childhood autism group (which corresponds to severe/kanners/etc) 0.9% had a conviction as adults. In the control group, the rate was 18.9%. For atypical autism the conviction rate was 8.1%. The control group was 14.7%. For AS, the rate was 18.4% and the control group was 19.6%.

So, in each subgroup of PDD the authors looked at, the rate of criminal conviction was lower than controls. For the type of autism that Doherty and AoA are talking about less than 1% had a conviction compared to 18.9%. I think its clear that if this paper is accurate then we’re hardly going to be overrun with autistic killers.

In the other paper I couldnt get ahold of to read in its entirety, the authors looked at wether moral judgement was present in autism. Its worth noting the assumption that ‘theory of mind’ is somewhat accurate by these authors but still,:

Cry baby scenarios, in which the distress of the victim is “unreasonable” or “unjustified,” do not elicit moral condemnation from normally developing preschoolers or from children with autism. Judgments of moral transgressions in which the victim displays distress are therefore not likely the result of a simple automatic reaction to distress and more likely involve moral reasoning…

Therefore,

…basic moral judgment [is] substantially intact in children with autism who are severely impaired in ‘theory of mind’.

Or in other words, severely autistic people demonstrably know the difference between right and wrong.

The third paper that I did get ahold of in its entirety was a very disturbing case study about an autistic 10 year old girl who killed her baby sister. After reading it and the heap of physical and mental abuses placed upon the autistic child, including the parents letting neighbours beat her and the parents withdrawing her seizure medications I felt this case was too extreme to be valid.

The feeling I get is that these tragic cases of severely autistic people seriously harming others are rarer than rare. Certainly the observation that severely autistic people clearly are aware of right and wrong and that the follow up observation that severely autistic (and atypically autistic) people had an extremely low conviction rate compared to controls shows that I think its very wrong to paint autistic people as requiring a cure before they kill us all or are forcibly locked away. It is also wrong to suggest that the ability to find happiness in a life with autism is somehow not realistic because autistic people kill others. Its a real shame that Doherty and AoA – all parents of autistic people – have so little respect for the sort of people their children may turn out to be.

Why is David Kirby grasping at straws?

9 Jan

Once more for the record, I like David. I tried very hard to get to see him in London last time he was over and we’d arranged to meet up for a drink but due to my family situation it wasn’t to be. However, I cannot let that stop me from recalling that we have very differing views on a wide range of things to do with autism and vaccines.

I have noticed of late a tendency for David’s HuffPo blog posts to be more than usually full of ‘if’ ‘maybe’ ‘might’ etc. However his skill as a writer buries these ambiguities and makes them appear certainties. I’m not even sure its a concious thing for David. His need to write well sometimes (I think) obscures a clinical need for precision in such delicate areas as he and I write in.

With that in mind, I recalled a post of his from November 2008 entitled ‘Tom Daschle: Friend to Many Autism Families’ in which he describes Mr Daschle thusly:

By nominating Tom Daschle to head up the Department, President Elect Obama has selected a man who has demonstrated an unflinching willingness to question vaccine safety, and to fight for the rights of those people who believe they have been, or may be, seriously injured by certain vaccinations.

I think David might’ve been trying to insinuate that Tom Daschle’s nomination was good for the autism/antivaccine community. Certainly however, as with the autism/antivaccine’s belief that RFK Jr would be appointed by Obama, this nomination might not be quite what that community is expecting. As blogged by Orac today, Daschle’s true feelings on vaccinations were spelt out by the man himself:

Immunization is probably as — as sound an investment as we can make in good health. I can’t imagine that we could do any better than ensure that every — every child is immunized, and that we understand the importance of — of broad-based immunization and the tremendous good health that can come from it.

Following that, David made a fairly innocuous presentation from a US Army scientist look much more sinister than it actually was. He claimed that the army listed autism as a possible ‘health effect’ of mercury/thiomersal. It turned out that that was not actually the case.

Dr. Centeno’s presentation, entititled ‘Mercury Poisoning: A Clinical and Toxicological Perspective,’ did mention Thimerosal. However, its inclusion was specifically intended to point out that although there has been some speculation about a potential association between Thimerosal and Autism, currently there is no data or science to support such a claim. Neither the AFIP nor Dr. Centeno have been involved in or conducted research on Autism.

After that was the recent debacle when David mixed up Change.org and Change.gov – the latter being a website of Obama. The former a privately owned enterprise for at least the last 2 years. David thought (and committed to a blog post) that Obama had hired pro-neurodiversity bloggers and he imagined a conversation Obama might have with an autism parent:

It is hard to imagine the President one day saying…“I do not think we should devote resources to finding out what happened to your [autistic child]. I do not believe there is anything we can do to help him, and it is not desirable to even try.

This post made me sad and angry. I thought better of David than that. To say that any of us who do not believe vaccines cause autism do not think it is desirable to help our autistic children is massively insulting. I hope someday David can maybe spend a bit of time with parents who don’t think vaccines caused their child’s autism and see for himself how we help our kids. And maybe an apology might be forthcoming also.

David’s latest faux pas is regarding the latest MIND institute study. In a post entitled ‘UC Davis Study: Autism is Environmental (Can We Move On Now?)’ David says:

Autism is predominantly an environmentally acquired disease, the study seems to conclude. Its meteoric rise, at least in California, cannot possibly be attributed to that shopworn mantra we still hear everyday, incredibly, from far too many public health officials: It’s due to better diagnosing and counting.

The autism epidemic is real, and it is not caused by genes alone: You cannot have a genetic epidemic. It really is time that we, as a society, accept that cold, hard truth.

Here’s the full conclusion:

Autism incidence in California shows no sign yet of plateauing. Younger ages at diagnosis, differential migration, changes
in diagnostic criteria, and inclusion of milder cases do not fully explain the observed increases. Other artifacts have yet to be quantified, and as a result, the extent to which the continued rise represents a true increase in the occurrence of autism remains unclear.

Lets look at that last again:

…the extent to which the continued rise represents a true increase in the occurrence of autism remains unclear.

And yet David seems to to think its crystal clear. The paper itself also contains some direct and fairly easy-to-check errors. For example:

The inclusion of milder cases has been suggested as an explanation for the increase in autism. Neither Asperger’s
syndrome nor “pervasive developmental disorders not otherwise specified” qualify under the category of autism in the DDS system.

Here is what DDS passed on to me in Summer of 2007. I promised not to attribute the quote to an individual so I won’t, but you can email DDS yourselves and ask them.

The current CDER was written in 1978 and updated in 1986, which is why the language is so out of date ( e.g., Residual Autism). California has clinicians in the field who are, of course, using modern criteria in their assessments but then they have to go backwards and try to fit those kids into the 1986 CDER. So you are going to have Aspergers kids, PDD-NOS kids in both categories 1 and 2. Categories 1 and 2 are called ‘Autism.’ But because there are so many clinicians, using lots of different techniques for evaluation, there is a lot of inconsistency and enrollment figures should not be misused as epidemiological data.

Hertz-Picciotto might also be interested in a quote from Rita Eagle PhD of the California Dept. of Developmental Services (DDS) to Journal of Autism and Developmental Disorders, Vol. 34, No. 1, February 2004:

To many clinicians, it appears that more and more children who, in the past, would never have been referred to the regional centers for example, bright but anxious and slightly socially inept kids with average or better IQs and children who, in the past, had been or would have been diagnosed as ADHD, OCD, ODD, anxiety disorder, learning disabilities, psychotic, and so forth are now being diagnosed wit high-functioning autism and/or Asperger syndrome and referred to the regional centers for services.

Truth is that a lot of Hertz-Picciotto 2009 is simply wrong. For an extensive overview of why, please read Joseph’s technical takedown from which I’ll quote his conclusion:

H-P et al. is a surprisingly poor paper. It does not produce any new data in order to support its two main results. It makes an apples-to-oranges comparison between a Finnish epidemiological study and California DDS ascertainment over time. It tells us the obvious about “milder” cases. In the end, I don’t think this is an improvement over the 2002 MIND Institute report to the California Legislature. In fact, it could very well be worse.

The way H-P et al. have gone about trying to show there’s a real rise in autism incidence over time is not a very good way to go about doing things, in my view. There are other ways. For example, I’ve suggested trying to replicate Lotter (1967) in detail. This would not be as easily challenged.

David closes his latest error prone piece with:

But the sooner our best minds in science and medicine come to grips with the fact that these poor, hapless kids have been exposed to the wrong environmental toxins and/or infectious agents at the wrong time, the sooner we can find out how to best treat what really ails them.

This is a prime example of bad science leading the media. David has reported on a paper that has made fairly bad errors and taken them at their word. Sadly, this sort of thing will only continue as long as institutions like MIND (controlled by a man who is dedicated to proving vaccines cause autism) churn out error strewn papers.

Well Harold, since you asked…

12 Dec

Over at his blog, Harold is fretting about the possibility of Autism Twitter Day really being a stealth-Neurodiversity attack:

What exactly does “positive” autism awareness mean? Is that concept consistent with “realistic” autism awareness?

Well, yeah. Look Harold, sooner or later you’re going to have to bite the bullet and accept the fact that a sizeable percentage of the autism community are interested in pursuing positive autism awareness. This means reflecting _one_ reality of autism – that there are positives to autism and they should be celebrated and that awareness of these positives is something that should be raised. This is reality. _One_ reality.

Another reality is that autism has its downsides too – we all live it, we all know that. Now, if Harold (or whomever) wants to do his own “negative” autism awareness day then – good luck to him. Personally, I’ve had enough of that but I recognise that it – just like the positive side of autism – is a reality. Harold goes on:

Still I can’t help but wonder when I see the adjective “positive” used to describe autism awareness whether it is an attempt to censor the discussion, to promote an unrealistic, feel good picture of autism

Yeah, damn that evil censoring positivity. Sometimes autism (take a deep breath Harold) _does_ feel good. It feels good to be involved in my childs life on many occasions. And as for censorship Harold, I’ve lost count of the number of times I’ve tried to comment on your blog only to note no comment has ever made it past your censorship. You, by contrast, continue to remain free to comment here.

Here’s the thing Harold. You don’t want there to be _any_ discussion of positivity in my opinion. You refuse to believe such a thing exists. You see autism = bad. End of story. The terrible truth Harold is that you are the censor. Anything that doesn’t contain a hefty dollop of misery isn’t ‘reality’ for you. Well, cool, whatever you like. However, please don’t try and dictate to everyone else – who clearly see that autism has many sides and many realities – what we should and should not talk about.

Dan Olmsted suffers by comparison

9 Sep

Ever since his unexplained sudden departure from UPI, Dan Olmsted has been working on his Magnificent Octopus entitled ‘Mercury Rising’.

He keeps his keen investigative journalism skills to the fore by writing the occasional blog piece for Age of Autism. These skills have included the scintillating exposé

“Where are the autistic Amish?” he asked. “I have come here to find them, but so far my mission has failed, and the very few I have identified raise some very interesting questions about some widely held views on autism.”

Except that Dan Olmsted never visited Clinic for Special Children in Strasburg, where

Dr. Kevin Strauss, MD, a pediatrician at the CSC. “We run a weekly vaccination clinic and it’s very busy.” He says Amish vaccinations rates are lower than the general population’s, but younger Amish are more likely to be vaccinated than older generations.

Strauss also sees plenty of Amish children showing symptoms of autism. “Autism isn’t a diagnosis – it’s a description of behavior. We see autistic behaviors along with seizure disorders or mental retardation or a genetic disorder, where the autism is part of a more complicated clinical spectrum.” Fragile X syndrome and Retts is also common among the clinic’s patients.

This is backed up by the fact that in April of last year, a study was published that showed that the Amish vaccinate.

Responses were received by 225 (60%) of the 374 Amish households in the community with children aged <15 years. An additional 120 responses were received by households without children. A total of 189 (84%) households with children reported that all of their children had received vaccinations; 28 (12%) reported that some of their children had received vaccinations; and 8 (4%) reported that none of their children had received vaccinations.

Among all respondents who knew their own vaccination status, 281/313 (90%) reported that they had received vaccinations as children.

As we can see, Dan’s investigative journalism is of the highest order.

Today, he has decided to maintain his high standards by doing what he does best – speculating wildly. This time its an absolute doozy.

Determined to hang on to the thiomersal idea at all costs (despite the fact that thiomersal has been out of all paediatric vaccines since 2002 and autism rates are still climbing in the US, just like the UK and just like Japan), Dan takes every bit of evidence that someone once walked past the house of a man who’s first cousin worked at a paint factory as highly suggestive of metal poisoning. In order to justify his new tome (entitled ‘mercury rising’ – don’t bother looking for it anywhere) he _has_ to keep interest in mercury up. Despite the fact that its quite clear to anyone with an ounce of common sense that the thiomersal hypothesis’ time has come and gone, without it, he has no book, hence no book deal, hence no prestige.

So, back to Dan’s latest genius reportage. Dan has just finished reading Autism’s False Prophets and is quite clearly not pleased with the coverage given to Kathleen.

Kathleen, you see, is everything that Dan Olmsted is not. He is slapdash, she is thorough. She checks sources, he thinks they’re what you pour on your dinner. She uncovers _actual_ wrongdoing, he thinks wrongdoing is solely confined to anyone with the title ‘Dr’.

Offit describes Seidel moving to New York City “where she met her future husband, a guitar player. She worked for Project Orbis, a flying ophthalmalogic surgical teaching hospital. …”
Whoa. A flying ophthalmalogic surgical teaching hospital? I suppose it’s possible she just booked their flights and never set foot on the plane, but assuming she was part of the team, I strongly suspect Kathleen Seidel was exposed to thimerosal occupationally.

Ever the principled and thorough reporter, Dan utterly fails to do what any n00b reporter would know to do – check your facts. There was one easy way Dan could’ve saved himself a fair amount of embarrassment over this blog post: he could’ve (get ready for the novel idea Dan!) _asked Kathleen_ . And when he did, she would’ve told him that booking flights did indeed fall under her remit *as a Secretary*. So did dictation, typing and general filing. Knowing Kathleen’s pretty awesome taste in music, I suspect the closest she got to any kind of metal was attending a LedZep gig or two.

Olmsted goes on to say:

Laugh me off if you want, but I have spent a lot of time looking for plausible links between parents’ occupations and autism in their children, and I know them when I see them.

Please, join with me:

BWHAHAHAHAHAHAHAHAHAHAHA!

Seeing the obvious

19 Aug

Two months ago I passed the half decade mark in running a blog about autism. I hoped when I started that I would be able to document my autistic child’s progress as xe developed and grew.

Somehow, through the efforts of others I got sidetracked. I no longer feel comfortable about blogging about xyr and that is nothing but a damn shame but it is still a reality. My wife is scared by the invective and hatred she reads in some people who disagree with me and we have an agreement now that I will not mention by gender or name any of my children.

This runs directly counter to my philosophy of trying to raise awareness of the good that can be available to parents and families of autistic people. Of the fun times – and there are many of them – as well as the heartbreaking times (and there are some of them too). I feel frustrated and angry that I have been forced by the irresponsible actions of others to not talk about the good thing I see in my life with autism. Maybe that was their reason for doing it. Who knows.

So, it was lovely this morning to see a story in my newsreader from someone who could see the good things. Who could see the obvious. Someone who chose to see the glass as half full.

The music was being performed live by two female artist of exceptional talent. Their music was sort of 70´s and 80s. They even took the risk of performing a Barry White Song, “My first , My Last, My everything” (I´m not sure that´s the real title), and they shocked me with how well they complemented his music. People were dancing. Old people and young people, but is was the “special” people who caught my eye; The down Syndrome people. They danced to the music and seemed so filled with the joy of the moment that it was contagious. I found myself dancing with them in my mind. They were laughing and moving, touching each other and their partners right at the moment when a spin or a turn was dictated by the music. As I watched I could not help but think of my own grandson, Anthony Adame, who is Autistic.

So maybe this writers choice of words wouldn’t be mine but there is no mistaking the vision of someone _who got it_ .

As I watched the crowd I noted many who looked upon these special people with sympathy and sorrow for them and their families. I know the look. I have often seen it while in the company of my own grandson Anthony. Only few ever intentionally mean to offend. Most simply do not understand the nature and condition of Down Syndrome, or Autistic people. They do not know the joy that many of these very special people have in their lives, or the wonder of living with, or being close to one of them.

Those words could’ve been lifted right out of my heart and mind. The joy is there. It exists. There is a choice that we can make as parents – do we fight a psuedo-war? A war which is simply psychological transference? Or do we see the fact that autistic (or Down Sydrome or Tourettes or Manic Depressive) people can see and experience happiness and bring joy to their families?

This isn’t a matter of religious style happiness. You don’t have to join hands with the world, hug a tree and sing Kumbya. Its really the simplest thing in the world. Its saying ‘my life is not like most peoples. I have hardship beyond what most do. My choices are limited. But look at the joy that my child/friend/grandchild/niece/nephew/cousin/child of a blogger from far away brings! Should I turn away from that? Or should I choose to participate in it?’

Its obvious isn’t it?

New clues to autism's cause

10 Jul

Time report on a new study that found yet more genetic clues to what causes autism.

A paper published in the current issue of Science by researchers at Children’s Hospital Boston and members of the Boston-based Autism Consortium identifies five new autism-related gene defects. Already, more than a dozen genetic defects have been found to be associated with autism spectrum disorders, which affect about 1 in 150 children, according to the Centers for Disease Control and Prevention. But the good news, say the Boston researchers, is that many of the genes are beginning to fit into a pattern. “While it might seem discouraging that it’s a growing list of genes, we can be encouraged that a common pathway is emerging,” says Dr. Christopher Walsh, chief of genetics at Children’s Hospital Boston and an author of the paper.

I haven’t read the paper yet but it sounds pretty interesting. They eschewed US and European people and elected to study Turkish and Middle East autistic people because these families have a high incidence of cousins marrying cousins. The end product of this paper is that the authors believe autism may:

…fundamentally amount to molecular defects in learning.

I have issues with the word defect. Some research indicates clearly that autistic people learn differently and not in a way that should be classed as a defect. However, I understand that scientists use terminology pertinent to their training. Hopefully, lessons can be learnt in this arena.

One fascinating thing – and one long suspected by many of us:

There may be hundreds of varieties of autism. From what researchers have seen so far, says Morrow, “It looks like almost every child with autism is different from the next — a different gene is mutated in almost every child.”

A different gene in every child. That – to me – is one more confirmation of what I once thought of as a spectrum and now imagine as an ever-shifting Aurora of autism. And not just autism but _all_ neurological differences.

Neurodiversity on show

9 Jul

I think I’ve talked before about how the concept of neurodiversity is – as well as being heavily personal – not necessarily something that most people know actually exists as a defined word. What I mean is, some people do things or hold views that are quite obviously neurodiverse but might never have heard of the word or concept.

Googe Alerts sent me a fantastic blog post this morning which was about a story I’d missed due to personal illness. It seems a young autistic girl had gone to a restaurant with her family and were ejected because the girl had a meltdown and another family refused to pay for their meal until the family of the autistic girl were removed.

Renee, the blog owner, makes it clear how repugnant the attitude of both the restaurant (and this intolerant person who demanded the girls family were ejected) were:

Now I will admit that I don’t know much about autism but I do know enough to realize that those that have it deserve the same respect and dignity as anyone else.

I would _love_ it, if that was everyones starting point. How nice would it be to have that attitude as the prevailing one when it comes to autism (or disability in general)?

Thats Neurodiversity right there folks.

Renee, goes on to detail some very intolerant responses to the reported story. They’re nothing that most of us who are either autistic or parents of autistic people have not heard in one shape or other before:

I don’t care if a child is autistic or what, the child needs behaviour modification. In this case, the child should have been removed from the restaurant by a parent until the child calmed down.

Thats someone who doesn’t get it. Thats someone whos probable priority as far as disability goes is not to respect the persons essential difference but to try and ignore it and make sure it does’t inconvenience them.

Thats what Neurodiversity challenges.

I’ll leave the last word to Renee, along with my thanks:

When we refuse to see people who are living with a form of disability whether it be physical, or mental as worthy of sharing our space we are constructing them as less than. It is in this disharmony of worth and value that ‘othering’ occurs. Our ability to project difference onto others leads to dire consequences for those that are unable to fit into a model of what society has accepted as “normal.” Despite the fact that we are individuals and no true norm exists, socially what we expect is conformity to preconceived ideas of what validates personhood.

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