Left Brain Right Brain

I’ve read a couple of posts today, both from people I respect a lot, that really made me stop and think about the nature of my own blogging and what I’m doing.

The first was a post from Susan in which she talked about the Autism Club:

I believe that an even better cause for the planet would be teaching tolerance for difference, whether it means tolerance for a different opinion from your own, or tolerance for the full spectrum of people we come across. Tolerance/inclusion is not about hitting people over the head with your viewpoint, but by providing gentle example. At any rate, if we’re all doing the best we can, which I assume we all are, that should be the bottom line. Autism should not be the club we use against each other.

I am conflicted about this. Let me explain – I think Susan is a great role model for parents of autistic kids and I think in the broader implications of what she says here (and I urge you to follow the link and read the whole piece) she’s spot on – we _should_ all be working together. However, in the three plus years I’ve been blogging about autism I’ve grown more and more saddened by the realisation that this doesn’t seem to be possible. I used to want to provide gentle example but as time progresses and viewpoints become more entrenched I find myself firing off a volley rather than providing calm reflection.

My problem is this: there are people ‘out there’ who want to make money or prestige from autism. There are other people who seem to genuinely hate autistics and the whole idea of autism – some of these people are parents. Some are grandparents, some are friends, brothers, cousins. Some are autistic themselves.

I cannot seem to find a way within myself to accept that these people merely have a differing opinion than mine. Different opinions are for things like what taste in music someone has. The things this group of people espouse revolve around the viewpoint of autism being something abhorrent. I find myself unable to let the things they say go unaddressed.

I _want_ to be able to say that it doesn’t matter so ‘each to their own’. But it does matter to me. It matter when people start using utterly untested treatments. It matters when children die. It matters when adults are dismissed for the ludicrous viewpoint that because they can talk or type they have no insight. It matters that science is hijacked by ignorance.

None of this is to have a go at Susan who as I say I respect deeply. I know she feels these things deeply too. Her post merely helped coalesce my thoughts.

The second post I read was from Estee who talked today about the lonliness, struggle and profound joy of parenting an autistic child. Its a great title and a great post, just like Susan’s. Estee says:

Some people take these debates, points of view, so personally (a hazard of religion as it involves so much emotion), that I have discovered a very dark side of autism. I discovered that parents with autistic children are so divided that the support I was seeking is hard to find. Instead of a journey to discovery, it is starting to look more like a war out there.

Depressingly true.

When I first started blogging about autism I have the distinct impression I was pretty much alone. I’m someone who makes their living from the web so I know how to tweak the technology to find things. I didn’t find anybody. I determined that in order to raise the wall of societal ignorance about autism I would talk about Megan. I would document our lives – the loneliness, the struggles and the profound joys as Estee describes it.

Somewhere along the line, as our family increasingly realised more about Megan and about autism and as we read more and more from autistic people themselves our views about things changed. I started to realise to my horror that there was a whole subculture ‘out there’ that wanted nothing less than the total eradication of my daughter and everyone like her. Defeat Autism Now. Cure Autism Now. Defeat Autism Yesterday.

Against such large, highly mobilised, politically aware organisations what chance did my daughter have to be viewed as someone worthy of respect? If she was seen as someone to defeat, how could she ever win at anything?

So I started to fight back. I don’t want to fight. I want these people to accept our children, both young and grown, up as _different_ – with _different strengths_ because my daughter and everyone like her shouldn’t be a prize to fight over. She should just….be….and be respected and allowed to just be. Nobody’s drowning in a tsunami over here. Nobody’s disappeared into the maw of a holocaust.

This is an emotive subject we all talk about. It goes right to the heart of what it is to value and be valued. I believe those who wish to ‘cure’ their children love them deeply in the vast majority of cases. However, I also believe that they are mistaken about the risk to benefits ratio that such treatments can offer. I further cannot understand how one can wish to remove something and also claim to value it.

My choice is that I will do my utmost to change the world for the good of my children. I will not see them dismissed as a collection of medical ailments to be treated with dangerous things. There is no respect in that position. There is no chance for a child to feel positively about themselves.

It shouldn’t have to be that way. In an ideal world it wouldn’t be. But in a world that contains people like John Best Jr – a racist, homophobic parent of an autistic child who runs a blog entitled ‘hating autism’ and who claims to know his child is mercury poisoned despite that child never having *even been tested* for any form of metal poisoning then I cannot stand by and let these things go unaddressed and uncommented on. My daughter needs a daddy who’ll fight for her when the need arises. That that is a necessity is, as both Susan and Estee intimate, a tragedy.

But sadly, it seems it is a necessity.

Very infrequently on this blog, the two main areas of discussion (autism and web development) intersect. Today is one of those times.

You may or may not know that the US National Federation for the Blind are suing Target over their inaccessible site. The NFB alerted Target some months ago and to retrofit the changes would be easy so they can hardly moan about it – besides, do it right the first time, hire a developer who knows his job. Its not rocket science.

The really appalling thing has been the whiney response of the web dev community:

Filing a lawsuit after 10 months of their initial contact with the company (if this is true, a pretty short legal time frame even in this dynamic world) is an irresponsible use of our over-burdened court system.

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The bottom line is I will not be the burden on the tax payers of my state by abusing a law that was enforced by some special interest group in a court of law.

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The internet is not a birthright, neither is the phone, neither is buying an electric blanket at Target and it has nothing to do with lack of empathy. Blind people can’t drive cars either … shall we sue the auto makers that they aren’t making automobiles accessible?

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Yes, it’s bad form for sure. Who doesn’t know enough to use alt tags? But I certainly hope the lawsuit gets thrown out.

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Alt ‘tags’. Right.

This is not the sixties and we are not fighting an evil empire. This is simply a case of a retail company not putting enough time and thought into one aspect of their sales.

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I’d say there’s a whole bunch of people here who like to put other people in little boxes. What would the collective response be if Target suddenly stopped serving black people? Or Jews? Or Hispanics? Or women? Or gay men? There’d be outrage and quite rightly so. Discriminating against a person simply because of their level of ability is wrong. Legally and ethically.

This isn’t a case of having to go back and make large scale changes – _any halfway decent web developer already knows how to make a page that will at least comply to Priority 1 for christ’s sake_ .

And thats at the heart of both the 508 legislation in the US and the DDA over here – no one _wants_ it to come to a court case but the simple fact is that a lot of so called web developers are basically shit at their jobs. If they really can’t do it right then they should get back to something they _can_ manage – McDonalds are always hiring.

But then things start getting really nasty.

Whats ignorant is thinking disabled people are normal. They are not normal. Stop drinking the PC happy juice. The idea that everyone, regardless of their personal condition, has a “right” to the exact same life is one of the most ridiculous notions of the modern era. Here in the US we spend 10x more per year to send one disabled kid to a normal highschool than we spend on the smartest kid in that highschool. Then we wonder why our kids aren’t as smart as those from other countries. Chances are the disabled kid probably doesn’t even know the difference, its only so his parents can feel their kid is normal.

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I’m not ignorant to the plight of the disabled, be it from birth or some accident/problem during life. I have my own problems (although not to this extreme, I admit) and the one thing I don’t do or accept is whining and crying about it. Accept your limitations, revel in what you still CAN effectively do, and deal with the rest in a more dignified and appropriate manner.

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This is from a so called web development community – SitePoint forums. I’m ashamed to say I have bought books from them in the past but they can rest assured I won’t be doing so in the future. The opinions expressed in that thread (and I only went three pages in, I couldn’t stand the sheer idiocy on display) seem to me to demonstrate something clearly lacking in these people. Yes, they’re largely ignorant on a technical level (one of these goons said as websites were purely visual why should blind people expect to be able to use them) but the more disturbing thing, speaking as the parent of an autistic child, is the indifference bordering on malevolence these comments reveal on the part of the commenters.

So you might be thinking – ‘so there’s some nasty arseholes around – big news’. And you’d be right. Ask any parent of any person considered to be different and you’d find some fairly depressing tales about society at large. Better yet, ask the people themselves and you’d hear some true horror stories about the interaction between those considered disabled and those considered abled.

This is 2006. Its not the 19th century. However, I fear that the likes of the idiots quoted above are firmly in the majority – those who will campaign to put money before people and those who will indulge their dislike of anyone different from them. We need to find a way to get past this irrational fear and hate of difference or not only do we become ethically corrupt (or more accurately _remain_ ethically corrupt) we stagnate as a species.

Vive la difference. Celebrate diversity. Whatever. Just try to find a way past the prejudice of idiots – then we all win.

OK – before I start its important for me to confess to a conflict of interest in this matter. As a fresh faced young man, Sigourney Weaver formed part of my Godess Trifecta in that I lusted after her, Gillian Anderson and Geena Davis with equal amounts of teenage/twenties lechery.

Ms Weaver has recently finished filming Snowcake in which she plays an autistic woman whos daughter dies in a car crash. My good friend, the incomparable Autism Diva has written a piece about it here.

During an interview, Ms Weaver said:

“I think we have to begin to see it [autism] as a gift,” she told a news conference. “We may not understand what it’s there for, but if you’re in the presence of someone with autism you learn so much. You learn how to play, you learn how to see things, you learn how to experience things and how jarring the world is.”

I have to say that despite my teenage carnal desires for Ms Weaver (OK, OK, I still have them) I don’t agree with her stating that ‘autism is a gift’. I don’t agree with it for the same reason that I don’t agree with the ‘autism is hell/death sentence/evil/etc’ viewpoint. Both views, taken literally, are misleading and superficial. Its my opinion that autism simply ‘is’. To be autistic is to be autistic. To be right-handed is to be right-handed. To be gay is to be gay. None of the states of being have moral or ethical states associated intrinsically with them and they don’t, in my view, need that status thrust on them either.

That said, its difficult to disagree with the positivity my future bride Ms Weaver brings to the state of being autistic and how we as NT’s can relate to it positively.

As ever though, there’s a bunch of literalists who still can’t see the woods for the trees:

A gift to whom? Surely not the person with autism, or his or her family. Perhaps actresses in search of roles? If autism is a gift, what’s terminal brain cancer? Hitting the Lotto?

John Gilmore, EoH List.

…If I sent her a letter I think that it would be along the lines of telling her how very happy it would make me to have her experience this ‘gift’ in her own life, ie, by injecting HER with enough toxins to destroy her body and mind.

Robin Nemeth, EoH List.

Ms. Weaver is no doubt confused over the junk label “high functioning autism.” It is not too late for her to personally experience the joy of autism. I’m sure she could find one of those mercury lusting doctors to shoot her up enough Thimerosal for her to join the bandwagon of the neurologically injured. OK, that’s my sarcastic take.

Lenny Schafer, EoH List.

What a bunch of me-me’s. These are the people who refer to themselves, with no apparent irony, as the autism community.

However, there was one great post on EoH which I have pleasure in quoting in full:

Well, even though I know this is gonna open a can of worms, I agree with her. When I’m in the presence of people with autism, I do learn a great deal. I learn acceptance of others who I would not have accepted as people only a few years ago. I learn that the person with autism has just as much dignity and right to be respected as anyone else. I also learn what pure love is and how scary it is for people with autism to trust others because they are often ridiculed by others. I teach my daughter every day that having autism should be source of pride; to contrast, it certainly isn’t something she should be ashamed
of. Yes we work on healing her body, but I’m proud of her and want her to have pride in herself regardless of treatment status. Because people with autism can suffer with horrid medical conditions and the people who care from them suffer does not mean people with autism are not wonderful people. From what I read, that’s the meaning I got from her, that people with autism need love, respect, and acceptance.

Debi, EoH List.

Debi, if you ever read this, you may be alarmed to know that you’re frighteningly close to espousing something very very close to what I think of as neurodiversity. Good on you for seeing the bigger picture.

Then we swung back to comedy:

Well, she’s just an actress…and unfortunately, we place too much value on the opinions of actors in this country.

Erik Nanstiel, EoH List.

Something of an irony when one considers that in the EoH file repository is a document that contains the sentence:

Finally, for the ultimate inspiration, here is a video of actor Lou Diamond Phillips introducting a cast of recovered autistic children

EoH Files.

Many people on the EoH list suggested emailing the films writer Angela Pell to let her know that she obviously had no idea about the hell of autism. Apparently they missed the bit where Ms Pell is described as having an autistic son and therefore knows just as well as they do both the lowpoints and the highpoints of parenting an autistic child.

And you are the parent of a child diagnosed with autism, everyday you are immersed in your child’s life and you deal
with the hardships that come with autism. You have a right to say that. Weaver doesn’t. Weaver is talking about what other people can get out of people with autism. She is not part of our community, she hasn’t paid her dues.

John Gilmore, EoH List.

Just to reiterate for the hard of comprehension – Ms Weaver is an actress, playing a role written for her by someone _just like you_ – the parent of an autistic child. All the words she utters were put in her mouth by the writer. Her beliefs have come from interacting with Ms Pell, Ms Pell’s son and people like him – y’know – autistic people.

In the post quoted above Gilmore goes on to say:

Our children are gifts and we should be grateful for them exactly the way they are. This is exactly what the neurodiversity types are saying.

Not quite John. I don’t consider autism a gift or a curse – it simply is what it is. Also, no one is saying you should ignore bad situations. What I’m saying as someone who respects the state of being autistic is that _that’s_ whats important – respect. You don’t have to be grateful for anything other than the fact that you managed to have a healthy living child. Some people don’t even get that. Whining on about ‘its not fair’ is pointless.

Then there’s the usual mistaken identities:

Sigourney Weaver is more than welcome to join me at the IEP meeting at my son’s school. Maybe she can make them understand that my son has been granted the “gift” of a comprehension level of a preschooler when he is 9 years old.

Jane Milota, EoH List

I’m not sure I would consider the way other children treat my son “really good fun”. I wonder if he’s having fun when they pull his hat over his eyes or just grab it off and throw it as far as they can. It’s not “really good fun” for me to try to explain to him that these children are not his friends. Apparently it is “really good fun” for these children that my son does have “high-functioning autism” Maybe Ms. Weaver and Ms. Pell would like to take a trip to Long Island and see “the gift” my son enjoys every day.

Cathie, EoH List.

Both tragic, horrifying situations but *not the fault of autism*. One is the fault of a schools ignorance and one is the fault of bad parenting by the people Cathie’s son has to deal with.

We really do have to find a way to move away from demonising a state of being that simply is what it is. The fact that its still poorly understood, badly catered to and swept aside is something that parents should be campaigning about – not getting caught up in fictional causative arguments.

I’ve instigated a new project today that I’ve called Autism Hub.

The idea is very simple – to aggregate blog feeds regarding autism in one place. Its very difficult sometimes to extract meaningful information from the huge sea of data that comprises the Internet and there’s so much we’re in touch with now that we wish we had been when we first began this journey that it seemed a good idea to try and unify some of the pertinent content out there.

Obviously, my beliefs being what they are about autism, I’ve set a ground rule that all the blogs that form the Hub membership must adhere to the central concepts of a) respect for the condition of being autistic and b) not promote a ‘cure’ mentality. That doesn’t mean the blogs that form the Hub don’t discuss interventions such as speech therapy, PECS etc because some of them may well do.

Basically, what the site does on a technical level is to periodically grab the RSS or Atom Feed of the members blogs. It then extracts the latest post from that feed and enters the details of that post into a table in a database on my server. Whenever someone accesses the Hub site, they access the data in the database.

There’s also a directory listing of all the member blogs on the site as well as a link to their Feed. There will also shortly be a dedicated RSS feed for the last 10 posts across all Hub members.

The Hub site itself is at a very basic level of functionality right now to which I hope to add over time. In the future it may be that visitors become users and can create their own aggregated content from the feeds provided which they can pick and choose from and save their preferences.

In the meantime, go have a browse around – there’s about 14 members signed up so far. If you know of any blogs who you’d like to see added to the Hub or you yourself maintain an autism related blog you’d like to join, please let me know as per the instructions on the site.

For those interested in the technical details of how the code works I expect I’ll be discussing that in a separate post under the Right Brain category at some point in the near future.

*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 one is NT, one is autistic and one is too young to tell. I’ve never felt anyone in the ‘neurodiversity crowd’ is anti me. Kathleen is a parent. Camille is a parent. Anne 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 autism is heavily weighted towards North America. Look among your own group for evidence of that.

*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 childs 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.

_Please note: It is worth reading Amanda’s thoughts on autism/comorbidities as they differ slightly from what I’ve written here. My own understanding of how this process pans out is altering as a result of this exchange with Amanda but I write here what is my most complete belief as of this minute._

*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 and/or racism.*

False. Just like you, we get angry and say stupid things. What Jerry Newport said was not on. Simple as that. It was, in my opinion, unacceptable. I am though totally bewildered how the words of one man apparently speak for everyone else. I’ve seen the posts from the other members of AutAdvo following Jerry Newport’s post. People were angry and disappointed with him. Not one person defended his position.

I was bemused to read posts by newer members of the EoH list (and one founding member) that castigated us for hate speech. Here’s an excerpt from an email I was sent earlier in the year 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 (one of the ironies being that Rashid Buttar is himself of Arabic descent I understand) as well as wishing death on me.

Generation Rescue Bigwig John Best Jr 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 sociopath, that they have personality disorders, that they aren’t really autistic.

All of you who who rightly condemned Jerry Newport’s words – I urge you to denounce these examples of bigotry and hate too.

*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. Chelation for example. 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 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 autism is definitely not mercury poisoning?*

Definitely’s a very strong word. The consensus of opinion is that that is very unlikely to be true. In my daughters case, its definitely not true. Autism is a spectrum, its not an ‘either/or’ scenario. I think its likely that some people have a genetic predisposition for autism which may be triggered by an environmental insult and that that trigger may even be mercury in some cases but ‘trigger’ does not equal ’cause’. Even if what I believe is 100% accurate (which is doubtful, who is ever 100% accurate?) that would still mean the vast majority of autistics are autistic for reasons other than mercury.

*8) 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?

Awhile ago, the Autism Society of America rebadged and relaunched themselves. Their website was overhauled and they launched an accompanying campaign which can be found at http://www.gettingthewordout.org – its very slick, very professional and totally misleading.

By contrast I urge people to visit Getting The Truth Out which is a much more realistic look at autism.

Its a big site and you’ll need at least a spare hour but please – when you go, read it all in one go. Don’t stop halfway through. Lots of people won’t get the message if they stop halfway through. It might be a very different message than the one you were expecting.

In places, for us parents, its not an easy read.

In other places it feels like we as parents have to accept that whilst we know our kids well we don’t know autism as well as autistics.

In still more places, this is a read full of hope and confirmation that difference is not equatable to bad or something that requires curing.

I’ll leave you with the plea to go visit this site whomever you are. Instead of donating money to a charity this week, please invest some of your time in reading this:

The young woman in this picture has autism, a debilitating developmental disorder that affects communication, socialization, and behavior.

The spots where she doesn’t have hair on her head are because she pulled it out so much that it never grew back. Self-injurious behavior is a common symptom. It’s easier to deal with her hair-pulling if her hair is cut very short.

The Autism Society of America (ASA) says that 1 in 166 people are diagnosed as somewhere on the autistic spectrum. They say that there is one autism diagnosis every 20 minutes.

Parents are devastated.

She can’t speak, so this website is speaking for her and many others like her. Our aim is to portray some of the realities of living with autism.

Once more I urge you: please find out the truth about autism.