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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?

Politics of Mitochondrial-PDD

15 Aug

For most people reading this blog, the story of Hannah Poling is very familiar. She was diagnosed with a condition called “Mitochondrial-PDD” by Richard Kelley of the Kennedy Kreiger Institute (*according to the document David Kirby blogged)

That, of course, is not what makes her well known. A year ago, I doubt many if any readers here would have heard of Mitochondrial-PDD. What makes her well known is that her case before the Federal Court of Claims (the “vaccine court”) was conceded by the U.S. Department of Health and Human Services (HHS).

What did they say? According to David Kirby’s post:

In sum, DVIC has concluded that the facts of this case meet the statutory criteria for demonstrating that the vaccinations [Hannah Poling] received on July 19, 2000, significantly aggravated an underlying mitochondrial disorder, which predisposed her to deficits in cellular energy metabolism, and manifested as a regressive encephalopathy with features of autism spectrum disorder. Therefore, respondent recommends that compensation be awarded to petitioners in accordance with 42 U.S.C. § 300aa-11(c)(1)(C)(ii).

The HHS conceded that vaccines caused an injury. In specific, the injury was an “aggravation of an underlying mitochondrial disorder”

It’s worth asking a series of questions at this point, I think

Q) Do all mitochondrial disorders result in autistic features or autism?
A) No.

Q) Do all the children in the 30-child study have vaccine injury?
A) No. It appears that Hannah Poling is unique in that group.

Q) Is mitochondrial medicine a highly specialized field?
A) Absolutely.

Q) Are autism doctors/researchers experienced with mitochondrial disorders?
A) Only a few, and not likely to the depth that the mitochondrial doctors/researchers are

Q) Is anyone going to look at the potential role of vaccines with mitochondrial disorders?
A) Yes.

And that is a key point that deserves some extra attention. Dr. Poling in his letter to the NEJM noted that

Also commendable is the new 5-year research plan of the National Vaccine Advisory Committee, which will entail the study of minority subpopulations, including patients with mitochondrial disorders.

In doing so, he cites the Centers for Disease Control and Prevention’s Immunization Safety Office Scientific Agenda: Draft Recommendations.

Which states:

CISA has formed a working group to identify key research questions and consider study methods related to mitochondrial disorders and immunization, in collaboration with partners.

CISA being the “Clinical Immunization Safety Assessment (CISA) Network”

The document further states as the first lines of the first two bullet points under this proposed study:

Mitochondrial disorders are a heterogeneous group of disorders characterized by impaired energy production.

and

Children with mitochondrial disorders commonly present with a range central nervous system findings.

*Again, note that autism/autistic-features are not the only outcome of mitochondrial disorders.

*I think this proposed study is a good idea. The government has conceded a case, mitochondrial doctors state that the question is open as to whether vaccines could be a stressor that causes a metabolic crisis.

People are pushing for this to be a part of the IACC’s Strategic Plan.

Why?

A group of people, experts in vaccine safety studies, are already going to look at the whole question of the potential role vaccines and mitochondrial disorders. Why carve out the even smaller subset with autism? Or, to put it more directly, why call for a second study, and, at the same time, leave out people who don’t have autism?

The answer is simple: politics. People want the idea of vaccine induced autism in the Strategic Plan. To do so, they are willing to ignore the fact that the study is already being planned and, worse, they are willing to sacrifice a large segment of the potential target population.

It’s just not right. Let the correct groups do the correct study. It’s in the planning stage. If people really care about the question of vaccines potentially causing crises in people with metabolic disorders, support the CISA study.

Why do I have a feeling this isn’t going to happen?

* added on edit.

Never go full Hollywood

12 Aug

There’s a big debate going on at the moment about a new film soon to be released called ‘Tropic Thunder‘.

The premise of the film is three self absorbed actors who are filming a war movie, it looks back at the actors careers in various ways to see how they come to this low point of their careers. Or at least thats the impression I got.

Ben Stiller plays a character who once played a character in a different film called Simple Jack. There is a faux movie poster for Simple Jack

Simple Jack poster

Simple Jack poster

which has the strapline:

Once upon a time….There was a retard.

Later on in the timeline of Tropic Thunder, this conversation takes place between Ben Stiller’s character and Robert Downey Jr.’s character:

Now, I’ll be honest and say that I believe that in his head when he was writing this, Stiller probably thought that this would be a funny little tweak at certain actors who take their craft a wee bit seriously.

Unfortunately, it really doesn’t come across that way. It comes across as Stiller grabbing at a bit of Farrely Brothers tastelessness in order to make people laugh at the word ‘retard’ and in turn his own characters lack of acting skills.

There’s a fascinating discussion of the film and the controversy here which is very revealing. The host starts by asking her interviewee if he was shocked that seeing a white man portray a black man wasn’t expected to be the shocking thing and the interviewee saying, yeah you would expect people to be shocked by that.

The interviewee then fills in watchers on the ‘Simple Jack’ backstory saying,

The joke is that he went so far in trying to play a………uhh…..play a………

and the host breaks in:

Come on! You can say it.

The interviewee states later:

I’m sorry, it may be a derogatory word but kids, kids of all, I used it when I was a little kid. I don’t think its something thats ever done in meanness.

That YouTube clip has two comments. The second one reads:

Playing a retard is Oscar gold. I have seen the clips – everything was fine. We can’t go banning every fucking word that offends every retard out there.

So, its OK to be shocked by a white man playing a black man. But its not OK to expect people to be shocked by people referring to other people as retards?

To me, there’s two things wrong with using the word ‘retard’ in this way. Firstly, to use it where it doesn’t apply automatically infers that it is a term for something that is ‘not right’. I hear Americans say all the time ‘that’s retarded’ to refer to something they consider wrong or ill thought out. Secondly (and building on this) I understand that the phrase ‘mental retardation’ is a medical diagnosis for people in the States. The phrase over here is ‘learning disabilities’.

I want to state this clearly as I can. As a species we cannot go around making value judgements on who, due to their mental or physical differences, is deserving of being thought of in a positive or negative light. As soon as we start doing that, we immediately devalue these peoples humanity. Its very, very easy to attack someone when you think of them as being part of a labelled group who are inferior to you in some way.

Pretending that the word ‘retard’ is not used as a put down or ‘in meanness’ is at best naive and at worst, deliberately deceptive.

One thing that neither the film, or any of the commentators I’ve read so far have considered is _why_ ‘playing a retard is Oscar gold’. I’ll tell you why. Because when its done well, it reveals the humanity, skills and desires of someone who is another human being sharing the planet with everyone else. That’s what acting is about isn’t it? Bringing out a characters humanity and letting us, the audience seeing them?

When its done poorly, as I suspect it is in this film, all that happens is that a group of people who are already bullied and called named can expect more of the same as the bullies have seen Ben Stiller and Robert Downey Jr doing it and think its OK to do so.

ASAN have produced a video response to this film.

David Kirby, he's making a list, he's checking it twice…

29 Jul

As has become apparent in recent weeks, there seems to be a ‘backdoor’ movement underway from the mercury militia.

It all started when Kelli Ann Davis attempted to rewrite US legislative history by stating in a speech to the IACC Working Group that the Combatting Autism Act contained specific phraseology on vaccination. It of course did not. David Kirby repeated this error in a Huffington Post entry. This was, it seems, little more than an attempt to ‘set the scene’ for a coup d’état. The logic seems to be that, since, during the CAA process, vaccines were touted as causes, even though the CAA decided to reject them as being too specific and settled for ‘environmental’, Kelli Ann and David felt that this was sufficient cause for stating the CAA included vaccine language. This seems to me to be akin to saying that, as society once believed the world was flat, it still is.

Anyway, this statement seems to have cut little ice with the IACC and so, the mercury militia unveiled Plan B – getting Brad Miller House Committee on Science and Technology’s Subcommittee on Investigation and Oversight to write a letter to Secretary Leavitt (HHS) to strongly recommend the formation of an advisory ‘board’ that they (in the guise of SafeMinds and Generation rescue) would police and use to control access from the public to the IACC and vice versa.

Personally, the idea fills me with complete horror. I’ve already discussed why but just to recap, the idea of Generation Rescue and SafeMinds being even slightly even-handed or representative of autism parents is like a bad joke. I provided email addresses and names for people to express their displeasure also (and I hope many of you did. If you didn’t, I urge you to right now. Both US and non-US people).

Anyway, the latest chapter in this battle for the scientific soul of the IACC is now underway as we speak. I have it on good authority that David Kirby is in the process of contacting as many members from an IACC strategic planning workgroup as he can to ascertain which way their opinion swung. He is specifically interested in the question of whether anyone among the 20 or so workgroup members other than Mark Blaxill and Peter Bell recommended the IACC include in the strategic plan a separate initiative on vaccines. If you listened to the webinar, you know firsthand that no vote was taken. In fact, since the workgroup’s expressed purpose is just to provide feedback and it has no authority over the IACC, no votes whatsoever were taken. But David is going ahead and asking people anyway. To what end I wonder? I think there are a few possible reasons.

The email David sent around asked people their position on vaccines in the Strategic Plan and to explain how they got on the workgroup (the answer, which anyone at NIMH could tell him, is that each IACC member was allowed to nominate one person) I would hazard a guess that this number would be very low indeed. However, what he could also be doing is seeing how many people don’t seem to care either way. The IACC is made up of some scientists who are, shall we say, ambivalent about all things except their own institute or federal agency. By not really caring either way, they stand a good chance of letting this thing happen via the backdoor. David will of course (being the excellent author he is) know exactly how to phrase this to make it sound irresistible.

And then of course there is the third and more Machiavellian option. That a ‘hit list’ is being compiled to intimidate the members. We have seen time and time again on the Age of Autism blog how its authors post the names and contact numbers/addresses of those it doesn’t like or who feel have wronged it. Would David be so nasty as to post the names of people who may inform him they intend to voice their opposition? I hope not. I would like to think better of him than that.

Facist Britian?

14 Jul

Watch Channel 4 news tonight at 7pm (for non UK-ers you may be able to watch here. There is apparently a horrific (if true) autism related story on tonight.

According to an email circulating:

…a special report regarding a disabled child taken into care through the back door by Bedfordshire, following the parents successful appeal to SENDIST and a High Court decision, which is irrational but dangerous. It is important piece especially for parents whose children are in boarding schools as it is enabling LEAs to place children in local provision and care, if the cost is cheaper than the child’s current provision.

Basically, what this report is claiming is that a couple tried to get their child into a particular school. The LEA protested their choice (far from uncommon). SENDIST supported the parents decision which meant the child would go to the school of the parents choosing. At this point, the LEA had the child taken into care. This would mean they would have control of where the child was schooled.

If this is true this is beyond appalling. The only reason I can possibly think of for the LEA to initiate such a despicable action is to save money. It sounds like the parents wanted a school that the LEA felt was too pricey. Thing is, for LEA’s (and I speak from experience) ‘too pricey’ is comparable to a bag of chips.

Worryingly, IPSEA (Independent Panel for Special Education Advice) seem to have experience of this very thing:

We have received some reports of parents being threatened with the removal of their child (or actual removal taking place) because the approach those parents have taken towards their child’s education is alleged by their LA to constitute “child abuse”. An example of such “abuse” has been a parental request for special school placement rather than mainstream placement.

Amazing. I can’t imagine anything more terrifying then some jumped up suit wearing bureaucrat telling you to agree with them or they’ll remove your child. How do the people who do this sleep at night?

UPDATE. Below is the Channel 4 report.

http://services.brightcove.com/services/viewer/federated_f8/1184614595

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.

Does 'autism' disrupt? And what does it disrupt?

8 Jul

Interesting post in the Seattle Times today. The title is _”Autism disrupts work and pay, article says”_ .

The article in question is a new study from Pediatrics:

<blockquote>An emerging body of work is showing the impact an autism diagnosis has on a family….<blockquote>….families with a child with ASD were 7 times more likely to report that child care problems affected employment than comparable families with typically developing children. These accommodations probably result in lower household income.</blockquote></blockquote>

Now, I’ll be upfront and say that I know those circumstances to be true. A combination of my own diagnosis (of manic depression) and my child’s diagnosis of severe autism with associated learning difficulties has made things very difficult at times. It is a simple truth that I cannot progress in my chosen career (I am a web developer) much past the stage I am at now because doing so means committing myself  (excuse the pun) to a schedule of work I cannot possibly meet, given our home circumstances. A lot of my professional friends and colleagues who are about my age and are of a similar skill level to me are now either owning their own companies or heading up teams of designers.

But…is it right to say that autism is the disrupting influence? Obviously In my own life there are my own personal medical issues but even so, I do not think it is right to say that it is _this_ which is the disruptive influence.

It is a simple truth that much more is expected of workers of this generation. People of my parents age never had the work pressures we do now. Employees are expected to work ‘above and beyond’ if they want to progress. To work hours beyond – way beyond – their contracted hours, to never be ill, to keep holidays to a time that is non disruptive to the employer. We in the West have started to live to work rather than working to live.

For a family with a special needs child (of any age) it is simply not realistic that they can meet this expectation. And so we _do_ need to expect a less financially comfortable life.

But what is the disrupting influence? Is it autism? Is it manic depression? Is it Down’s Syndrome? Is it Cerebral Palsy? Is it any other physical or mental difference?

Or is it the demands of a society that is putting less and less stock on the family and more on work?

An Autism Hub Update

6 Jul

Last month, it became even more apparent to me that academia appreciates the Autism Hub.  I’ve always enjoyed a large proportion of visitors from .edu domains at Autism Street, and I’m sure the same goes for much more than a few hub bloggers. I mention last month, because that’s when a group of several Autism Hub bloggers were invited to present at the USD Summer Autism Conference (a second invitation). I would be remiss if I didn’t extend a “thank you” to Steve D of One Dad’s Opinion for his tireless effort in organizing our participation there. I would be even more remiss if I didn’t note that some outstanding people (like Drs. Anne Donnellan and Julie Robledo of the USD Autism Institute) in academic circles seem to have an eye on the future – they both seem to have a keen interest in adults with autism, and what’s coming from the real autism community in general. Of course, having an autistic child, it’s difficult not to appreciate those whose conference was titled, “Work With Me, Not On Me“.

At any rate, thinking a little more about an eye on the future, I proposed a minor facelift for the Autism Hub. As many of you are probably aware, the Autism Hub is no longer run by Kevin Leitch, so I sent the proposal to the current Autism Hub administrators. I was happy to learn that the proposed changes were accepted and implemented.

Have a look for yourself.

I’d like to take a moment and acknowledge the efforts of Kevin Leitch. His orignal Autism Hub designs paved the way for a true community tool that has enormous value. I also appreciate the fact that he does not oppose such changes (as communicated in an e-mail) to his original designs. The whole situation kind of reminds me of that moment when a parent lets go of something with respect to teaching their children. I would assume he’s proud that the Autism Hub stands on it’s own, but I would also assume he’ll view some things as potential mistakes (mistakes that are the Hub’s to make and learn from).

A minor visual redesign and a few potential mistakes aside, the long-term importance of The Hub is clear in my opinion. It remains one of a few unique places on the internet where one can find some of the best blogging from autistic adults (and family members and students/professionals) who focus on the important issues surrounding autistic people and the autism community.

Many thanks to Kev Leitch and everyone who contributes with their writing (or other skills) to The Autism Hub.

Nigerian Neurodiversity

17 Jun

Its refreshing to realise sometimes that there is a world ‘out there’ beyond the West and that they are living with autism too. And whats more, they aren’t considering it soulless, or sucking the marrow out of families, or organising pointless marches for people to exercise their right to blame others, or forming organisations that concentrate on blaming vaccines, or claiming that denying autism was anything except mercury poisoning in the past and now claiming its the vaccine schedule is just the evolution of a hypothesis, or making a tidy profit of the ignorance of parents.

No, what they’re doing is ‘serving humanity’:

Mr. Babatunde Willouhby,a masters degree holder, left his lucrative job to serve humanity by taking care of autistic and children with Down syndrome, amongst others. He is an administrator in an autistic school, named Hope House School, here in Abuja. While chatting with him recently in his office, I saw in him a man with passion for dealing and caring for a special group of children with slightly different behavioral pattern from those who the society will tag ‘normal children’.

and

Mr Ayiem……said the value he attach to the welfare of his son does not make him see the money spent as expensive, but an investment which is worth giving any individual with confidence that, though it will take time, his son will be independent some day.

and most of all

….socially people see it as a stigma, but I don’t. I have had occasions where I go out with her to supermarket, church and social gathering and you notice people looking at you in a particular way, but I don’t care because she is my daughter. I give her all my love and I display it publicly. I want her to know that she is one of the must loved children in the world.

………..

autistic children and children with Down syndrome can contribute significantly to the society ,if only they are accepted. When we are at home for instance, we help her with her school work by showing her what to do and what behaviour is proper. Of course, like any other child she may go off the track but we help her to do the right things.

……….

If you play any song on radio or on CD and ask who sang it, whether American or Nigerian, she will tell you the name of the artiste. How she knows the name of the artiste and their songs, I don’t know. So if she wants to take that line, I will encourage her all the way. Wendy to me, is one in a million and for me she is a normal child.” From this discussion with Mr Ojugbuna I saw the picture of a father who believes in his child and that was reflected in the behavior of Wendy.

Nigeria is classed as a developing nation (what used to be called ‘third world’). I’d say that in my opinion it has developed a whole hell of a lot further and faster than some people I can think of over in this supposedly enlightened culture.

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