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A (head) space of my own

14 Nov

Four days ago the New York Times published a fascinating piece on the hypotheses of two scientists who are positing that mental disorders of an unknown variety and number are all actually one disorder. Specifically mentioned are autism (of course), schizophrenia, manic depression (aka Bipolar), depression:

In short: autism and schizophrenia represent opposite ends of a spectrum that includes most, if not all, psychiatric and developmental brain disorders. The theory has no use for psychiatry’s many separate categories for disorders, and it would give genetic findings an entirely new dimension.

Two fascinating aspects of this appeal to me. Firstly is the idea of this proposition as ‘hypothesis generation’:

The reality, and I think both of the authors would agree, is that many of the details of their theory are going to be wrong; and it is, at this point, just a theory,” said Dr. Matthew Belmonte, a neuroscientist at Cornell University. “But the idea is plausible. And it gives researchers a great opportunity for hypothesis generation, which I think can shake up the field in good ways.”

Can you sense where I’m going to go with this yet? Shaking up the field in _good_ ways…..as oppose to _bad_ ways….I’m getting predictable right?

Well, you’d be right. This is definitely a good sort of hypothesis generation – it leans on sound scientific theory and provides a possible next step for a wide variety of mental differences (my word, ‘disorder’ is not right for me) which other scientists can break down into testable ideas. Some will be right. Lots will be wrong. And science will carry on getting closer and closer to an accurate reflection of reality.

And the bad sort of hypothesis generation? It relies on science that is either unsound, improbable or fabricated from whole cloth. It represents a bad financial investment as the return from this sort of hypothesis in terms of solutions is pretty much zilch. And as the recent letter to the IACC sent by groups pursuing such hypothesis shows what it does produce is an overblown sense of entitlement and the lack of recognition that science cannot be served up like a drive thru burger meal.

Anyway, moving on from that, the second thing that appeals to me about this proposition is the fact that it links my autistic child and I in non just the bonds of blood and familial genetics but the genetics of difference too. She is autistic I am manic depressive – we have a head space all of our own.

Back in July, I wrote an entry that referred to an ever-shifting Aurora of autism’. I would love to have underestimated and would like to be able to refer to ‘an ever-shifting Aurora of neurodiversity’ where I share genetics differences with my autistic child but in slightly different shifting shades. All my online and offline friends with OCD, depression, dyslexia, schizophrenia and a wild mix of others are really my genetic family.

Vocational Rehabilitation and Autistic Adults

13 Nov

I recently saw a paper in the Online First section of Journal of Autism and Developmental Disorders called “Use of Vocational Rehabilitative Services Among Adults with Autism“. I knew I had to read it. It comes from one of my favorite research groups, that of Prof. David Mandell. I’ve been carrying this paper around in my pocket for a month now. It is folded, tattered and filled with highlight marks.

The reason for the delay: how to condense this paper into a meaningful blog post without essentially copying the entire paper? As it stands, this will be a series of excerpts. The reason for blogging it: papers on issues directly related to adults with autism are few. This one looks at what I consider to be a very important question: training to get employment for adults with autism.

One other note: I will skip over the data analysis section. This will be a long post already, and I want to concentrate on the discussion of the results. But, rest assured, they did their due diligence and analyzed the data thoroughly.

So, even though this may not be the best presentation of the study, if I don’t do it now, it may never get done.

Here’s the abstract:

This study examined the experiences of individuals with autism spectrum disorders (ASD) in the US Vocational Rehabilitation System (VRS). Subjects included all 382,221 adults ages 18–65 served by this system whose cases were closed in 2005; 1,707 were diagnosed with ASD. Adults with ASD were more likely than adults with other impairments to be denied services because they were considered too severely disabled. Among those served, adults with ASD received the most expensive set of services. They and adults with MR were most likely to be competitively employed at case closure. Post hoc analyses suggest that their employment was highly associated with on-the-job supports. The results suggest the importance of the VRS in serving adults with ASD.

If you are interested, here is the first page (for free).

The paper points out that adults with ASD require considerable supports, with possibly only 15% achieving independence, and another 20% “functioning well in the presence of community based support.” This points out the great need for studies such as this one. We need a better understanding in order to improve the situation for the estimated 65% who are not independent or “functioning well”.

In the United States, the vocational rehabilitation system falls under the Department of Education, and helps with assessments, diagnosis, counseling, job search assistance, assistive technology and on-the-job training.

The outcomes include “Competitive employment”, which involves integrated settings (with supports as needed) and wages at or above the minimum required by law. Alternatively, Non-competitive employment can be paid below the minimum wage, and can include sheltered employment.

Results were compared for people with ASD, Mental Retardation, Specific Learning Disability (SLD) and Other Impairment Cause (OIC).

Individuals with ASD’s have “markedly different vocational needs than individuals with other developmental disabilities”. And “the small body of research in this area suggests that services provided through vocational rehabilitation programs are less than optimal for individuals with ASD.”

The authors stress, repeatedly, the value of employment. The concluding paragraph starts with the statement, “Work is among the most valued social roles in our society. Many individuals with ASD can achieve successful employment outcomes, despite questions about access and cost-effectiveness.” The value of employment is also spelled out in an earlier section:

Our findings are also important in light of research indicating that supported
employment through vocational rehabilitation programs may improve cognitive performance of adults with ASD (Garcia-Villamisar and Hughes 2007) and generally improves quality of life (Garcia-Villamisar et al. 2002).

They found that at the end of VR training, 42.2% of those with ASD were competitively employed, whith 2.1% employed in a sheltered setting. The remaining (55.7%) were not employed. These results are better than those for the other groups. The numbers for those competitively employed were, 39.4% (mental retardation), 37.5% (SLD) and 35.1% (OIC).

They found that 4.3% of individuals with ASD had cases closed for having a disability “too severe to benefit from services”. Compare this to 2% for those with mental retardation, 0.4% for those with SLD, and 2.2% for those in other categories. So, people with ASD were more likeley to be denied services for this reason. They state that this “hints at the possibility” that “some people with ASD’s may never explore the use of VR services because they (or their families) do not see it as a viable option or are discouraged from seeking services.” This could affect the numbers found for those achieving competitive employment.

The costs were compared:

VR expenditures were much higher for individuals with ASD than for those with other impairments except people with MR. This difference may be due to the additional needs of people with ASD (Muller et al. 2003). Alternatively, the VR system may not be structured to provide services to individuals with ASD in the most cost-efficient manner (Hillier et al. 2007). Both potential explanations beg for additional research on the most cost-effective strategies for achieving competitive employment.

The median costs? $2,380 (ASD), $2,160 (mental retardation), $1,108 (SLD), $1,280 (OIC).

So, yes, the numbers were higher for the ASD group. But even $2,160 per person to me sounds like a pretty darned good investment to get a sizable fraction of a group employed.

The authors noted:

VR expenditures were much higher for individuals with ASD than for those with other impairments except people with MR. This difference may be due to the additional needs of people with ASD (Muller et al. 2003). Alternatively, the VR system may not be structured to provide services to individuals with ASD in the most cost-efficient manner (Hillier et al. 2007). Both potential explanations beg for additional research on the most cost-effective strategies for achieving competitive employment.

There is a lot more valuable information in this paper. One thing that is missing is who funded the research. I’d love to hear that this is the sort of research NIH is sponsoring, and will continue to sponsor through the IACC process.

I’ve already quoted part of the conclusion. I think it worth quoting it in whole here:

Work is among the most valued social roles in our society. Many individuals with ASD can achieve successful employment outcomes, despite questions about access and cost-effectiveness. Individuals with autism and their families should seek out supports and employment; other support providers should emphasize employment as a possible social role; and policymakers should continue to examine ways in which they can enhance the variety and accessibility of supports for adults with autism, including vocational services, in order to ensure that they have opportunities to live and contribute in their communities.

ResearchBlogging.org
Lindsay Lawer, Eugene Brusilovskiy, Mark S. Salzer, David S. Mandell (2008). Use of Vocational Rehabilitative Services Among Adults with Autism Journal of Autism and Developmental Disorders DOI: 10.1007/s10803-008-0649-4

Dear Mr Obama

9 Nov

As a Brit, it really matters not one jot what I write to you, think of you or think of your policies. However, as we both know, it _does_ matter. Your soon-to-be-predecessor (and my goodness I am happy to write those words of Dubya) never understood why the opinion of the outside world mattered but you clearly do. And we in the outside world are rather keen on you.

I am very happy to note that your appointments indicated so far include Michael Strautmanis – father to an autistic child. As I understand it Mr Strautmanis very much favours an evidence based research approach to science. Good to know.

I was also amused to note that some think a certain Mr Kennedy may get an influential post. I suspect not. You don’t strike me a stupid man Mr Obama. Maybe some other portfolio needs filling? May I suggest Mr Kennedy becomes your drugs Cszar? I understand he has a good history in sniffing out drug issues.

Anyway, I was reading your Obama Statement in Support of World Autism Awareness Day and Awareness Month and I was both tut-tutting and nodding approvingly.

Tu-tutting as I read occasional talk of ‘epidemic’ and nodding approvingly as I read things like:

This effort will include diverse but credible research, treatment, personal care/assistance and family support…

and

Our nation and our world deserve an immediate and focused four-prong approach: research, intervention, life-long support, and an end to discrimination. As a result of the crisis, there is much debate as to the cause of autism and how to address it. What we need to do is devote ourselves to a solution built from a comprehensive plan that is research-based, inclusive, and effective.

Credible research….a plan that is research-based….very good to hear. I fear your recent competitor had no such plan but it is very good to hear of your commitment to a research-based plan.

Its also good to hear that you accept autism as a lifelong issue that requires intervention and an end to discrimination. Although this puts you at odds with the flat earthers who insist there is an autism epidemic which can be cured through non research based interventions (which obviously, they cannot back up) I think you have taken the right path and concentrated on the right issues – research based science that will offer a lifetime of evidence based interventions and care and result in an end to discrimination.

Glad you got in soon-to-be Mr President. I think you’ll do the real autism and autistic communities some real good.

Americans: make yourself heard

3 Nov

If the constant news barrage hasn’t driven it home to everyone yet, tomorrow is Election Day in the United States.

We’ve discussed the upcoming elections recently on this blog, especially since Senator McCain brought up autism in the final debate. This has been called historic. It likely is historic that disability issues have been so prominent in the debate and the discussion. I would venture to guess that Senator Obama’s policies on autism and disabilities in general are more thorough than has been seen before by a major candidate.

So, yes, get out and vote. That’s the obvious next step.

Then, take the less obvious step: email both candidates. Let them know what you like and don’t like about their platforms. Remind the winner of his team’s promises. But remember, there are three senators running. At least one will still be a Senator next year. Remind him/them of promises made. (should you be from Alaska and should Governor Palin remain Governor, let her know your thoughts as well.)

IDEA needs to be fully funded. That can’t be tied to earmarks, that can’t be tied to spending freezes. It is the right thing for the U.S. to do, regardless of circumstances. We as a country made a commitment, and we’ve never fulfilled it. Now is the time to change that.

Beyond IDEA, we have a commitment to all people with disabilities, of all ages. People have a right to a life with dignity.

Again, go out and vote. But, consider sending an extra message. Yes, it will be buried in the vast number of messages the winner (and his opponent) will get on election day.

The campaign websites have information on how to contact McCain/Palin and Obama/Biden. If can always reach Obama, McCain and Biden at their Senate offices as well.

More presidential autism politics II

30 Oct

I’ve been watching (happily) the recent emergence of autism as a topic of the U.S. presidential race. Actually, it is the emergence of autism as a topic for the republicans, as Senator Obama has had a clear policy statement on autism and on disabilities in general.

Recently, I noted that the McCain/Palin ticket’s statements were not strong commitments, but more general statements of support. Since that time, Governor Palin has come out with some stronger statements so it is worth revisiting the subject.

The Pittsburgh Tribune Review notes that in a recent speech:

Palin proposed “fully funding” the Individuals with Disabilities Education Act, which the campaign later said would cost $45 billion over the next five years. Palin proposed gradually increasing the $11 billion spent annually on such programs to $26 billion — the amount experts say the programs actually cost.

(as an aside $26B is only the 40% share the Federal government is supposed to be paying.)

But, back to the main theme–this is really good to hear. Whatever happens next Tuesday, Sara Palin, John McCain, Barack Obama and Joe Biden will be people of importance. The more of them that make commitments to support people with disabilities the better.

So, for that I thank Ms. Palin. I am pleased to see commitments firming up–they were very soft in the beginning.

I’d still like to see more. First, I’d like to see Mr. McCain pick up this theme. Yes, I know that they are trying to use this to help define Gov. Palin, but I’d like to hear Senator McCain commit to fully funding IDEA (as a part of a bigger disability platform). I’d love to hear him say that even if he remains a senator in a week, he’ll support fully funding IDEA.

But, let’s look again at the speech: here’s a paragraph from the Washington Post on this same speech:

In her speech, Palin said the federal government could finance the new investment by taking some of $18 billion it spends each year on earmarks, specific projects that are designated by members of Congress.

Let’s take a look at what the above means:

The President and the Vice President don’t have the power to pull earmarks out of bills. If fully funding IDEA is tied to reducing earmarks, it isn’t a commitment that she or Mr. McCain would have the power to enforce.

I don’t want to hear in a couple of years, “Well, we’d fund IDEA if congress would stop putting earmarks into bills.” I want to hear, “We increased the level of funding for IDEA in the budget we sent to congress. Further, we are going to fight them if they cut it.”

As election day nears, the pressure on the candidates gets greater. The McCain-Palin ticket has already responded by making their statements more firm. But, this isn’t the time to accept a weak commitment–we need to push them to do more.

Let Governor Palin and Senator McCain know: thank you very much. Sincerely, we thank you. But, please, take the time in this last week to make a firm commitment to funding IDEA. Also, IDEA is a great first step but, please, expand your disabilities policy to include more (like supports for adults, or whatever issues are big for you).

The McCain-Palin ticket has a contact form right on their website. So does Obama-Biden.

McCain courts the autism vote

16 Oct

If you watched the U.S. presidential debates tonight, you heard the “A” word a few times. Yep, Autism.

Senator McCain, who tripped up early in the campaign by giving credence to the thimerosal debate (and, yes, tripped up is accurate since he backed away fast from that stance), is courting the Autism community’s vote.

In discussing his running mate’s credentials to be president (should Mr. McCain for some reason stop being president), Mr. McCain stated:

She’ll be my partner. She understands reform. And, by the way, she also understands special-needs families. She understands that autism is on the rise, that we’ve got to find out what’s causing it, and we’ve got to reach out to these families, and help them, and give them the help they need as they raise these very special needs children.

She understands that better than almost any American that I know. I’m proud of her.

I wish Mr. McCain had more contact over time with the disability community. “She understands that better than almost any American I know”…I guess since she has a child with special needs and a young relative with autism, she has some experience, but wouldn’t it be nice if Senator McCain knew someone in the autism research community? (a guy can dream, can’t he?)

Actually, I really liked the way Senator Obama brought this back to one of his themes in his reply:

I do want to just point out that autism, for example, or other special needs will require some additional funding, if we’re going to get serious in terms of research. That is something that every family that advocates on behalf of disabled children talk about.

And if we have an across-the-board spending freeze, we’re not going to be able to do it. That’s an example of, I think, the kind of use of the scalpel that we want to make sure that we’re funding some of those programs.

For those who didn’t watch, there was discusssion earlier in the debate about a Senator McCain’s proposal for a spending freeze. Senator Obama made the point clear: cut smart, not blindly.

That said, I also liked how Senator Obama brought in the entire disability community. Yes, it was still child focused, but he did talk about “other special needs”.

I like how he sees research as a priority.

Senator McCain later stated:

And I just said to you earlier, town hall meeting after town hall meeting, parents come with kids, children — precious children who have autism. Sarah Palin knows about that better than most. And we’ll find and we’ll spend the money, research, to find the cause of autism. And we’ll care for these young children. And all Americans will open their wallets and their hearts to do so.

I wonder how many autistic adults were in his audiences? I wonder how many people with other disabilities (or family members with other disabilities) were in the audience.

Senator McCain may have thought that he was winning my vote, but he just lost it. Yes, disability issues, especially autism, play a role in my choice. But, this looks too much like pandering to the vaccine-autism crowd while doing the politician’s two-step around the sticky details.

I.e. it was “let’s use code words about the epidemic and vaccines to gather votes”.

I really hope I am wrong, but that was my read.

Senator Obama’s response really did speak to me, though. Focusing on funding research–and research for other conditions besides autism–spoke to goals that match mine, rather than an attempt to buy my vote.

The Los Angeles Times has a full transcript of the debate already.

Also, AutismStreet gathers his thoughts and types faster than I. There is a good treatment of this subject there.

here’s a taste:

She understands that autism is on the rise? Really? Can she clearly convey the distinction between more diagnoses, and an actual increase in prevalence? Does she understand diagnostic substitution? What about the broadening criteria and the changes in the very definition of autism? Does she really understand this? Or, is McCain pandering and simply parroting anti-vaccination and anti-autism advocate fundraisers’ “autism epidemic” rhetoric?

[added material]

I want to repeat: I really hope I am wrong about Senator McCain. Even if he loses the presidential bid, he is a Senator and someone we need to help in the probable lean years ahead–and beyond.

Sharyl Attkisson's 3rd autism/vaccine concession

26 Aug

A few days ago, I posted an entry about Sharyl Attkisson’s breathless parroting of ‘facts’ regarding a case from 1991 based on a child born in 1974. This case was settled in favour of the child. It transpired (of course) that the Special Master had in fact said nothing about autism whatsoever.

However, an interesting comment was left by ‘M’ who said:

Dravet syndrome? It is a genetic disorder, de novo mutations of the sodium-channel gene SCN1A. Children with these mutations are seemingly normal until they have the first high fever episode (it could be post-vaccination fever as well) – then the syndrome manifests with epileptic syndrome and subsequent developmental delay (encephalopathy). The genetic diagnosis was not possible until recently – the mutation was first identified in 2001.

An intriguing possibility that I read and then with my usual stunning foresight, totally forgot about.

However, I got an email yesterday that raised the issue once more. I cannot share with you who its from, a fact that is rather annoying (but understandable, this person doesn’t want to expose themselves to the loving care of the mercury militia) but I assure you, you would recognise this name.

The writer assumes that this is a vaccine injury because the special master determined that this was a compensable case. However, this event occurred in 1974 and the hearing in 1990-91. Now, in 2008, it is obvious that the epilepsy and resultant developmental impairment and “autism” are not caused by DTP but, rather, are due to Dravet syndrome (or severe myoclonic epilepsy of infancy), which is a genetic epilepsy with a mutation or change in the SCN1A gene. The evolution is typical of this disorder. It is a very temperature sensitive epilepsy (a 1 degree Celcius elevation is sufficient to trigger a seizure) and is not caused or aggravated by any immunization. Berkovic et al described this entity as a cause of vaccine encephalopathy in their Lancet Neurology 2006 paper.

I am concerned about the superficial investigatory actions of this writer (actually no real investigation was done – she assumes everything to be true). I thought I would share this information with you and let you use the information as you wish.

I can’t find a copy of the entire transcript, but from the parts Attkisson transcribed and quoted and comparing the evolution to the Dravert Syndrome home page, it certainly does look like a good match.

So what does that imply? Well, if its _not_ Dravert Syndrome then, nothings changed – still not autism though. If it _is_ Dravert Syndrome then it goes to show how little we know about genetic disorders and how careful we should be about rushing to judgements.

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?

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.

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

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