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Bitter Sweet

17 Jun

One of the frustrating things that often strikes me about the direction blogging has taken me in is the fact that the vast majority of the people I consider friends I have never actually spoken to, or met and who I actually live in a different continent from.

Of course I often receive pictures, podcasts or video of events that my online friends have participated in. Camille, Kassiane, Sue Senator, Estee, Amanda, Kathleen, Kristina and more. But this isn’t the same.

However, earlier this year, my family was blessed with a visit from two people who I both very much wanted to meet and yet at the same time was pained at the ultimate reason we finally met.

I first blogged about Katie not long after she was killed. It was then, and still remains, the hardest post I have ever written. Autistic children have been murdered before and since Katie died and I wrote about them too but although they horrified and saddened me, Katie’s death remains most memorable to me. Possibly because I have two little girls who bracket Katie’s age and the thought of them dying fills me with a terror that I cannot describe.

Katie’s grandad read that post and the video of Meg on her trampoline that accompanied it. The posting of that was intended to be our family’s tribute to Katie’s life. A little girl having fun.

But something happened I did not expect. Katie’s paternal grandad, Mike, read that post and saw that video and we started to communicate. Not about the trial but about our shared experiences with autistic little girls. I also swapped emails with Katie’s paternal uncle.

Over the course of the last year, Mike and I have developed a warm friendship and have swapped addresses, pictures of the family, birthday cards for family members. We talk often about Katie and the wonderful life her Dad and her paternal Grandma gave her. Our ability to converse across internal boundaries take a step up when we started to use Skype to actually talk directly. And believe me, if you think the world has exhausted its sense of wonder then you should experience listening to mid-afternoon bird song in the background of a conversation you are having with someone over 4000 miles away whilst the darkness of evening descends at your house.

I have also talked with Katie’s dad, grandma and uncle and listened to the sounds of Katie’s younger sister playing happily.

These people are family now. There’s no other way to think of them.

Earlier this year, Mike told me that he and Paul were coming over to the UK to visit. Brilliant news. I was so looking forward to meeting them finally.

We had a fantastic time. Not that we did very much, we just hung out, talked and played with the girls. I’ll admit that I had been nervous – how could we all be expected to get on when we’d never really met? – and yet those worries were banished. Within 10 minutes we were all chatting and laughing away with each other as though we’d known each other all our lives. Tabitha was absolutely smitten with Paul and followed him around begging to be picked up most of the day, which Paul – a natural gentleman in every sense of the word – was happy to do. Mike got some grandpa kisses from Meg which I believe made his day. Meg is naturally reticent around new people but she knew Mike and Paul were good people immediately.

And there was sadness too. Nobody could forget why we were all together that day and I feel I speak for all of us when I say that if I could make a promise never to have met Mike that Katie could be returned to them, that promise would be made in a heartbeat. Mike and Paul brought over some of the ribbon Kassiane had selected for Katie and which Paul and Mike wore with honour every time they went to court to battle for Katie. That was a humbling experience for me.

Mike and Paul stayed long after the girls had gone to bed. Naomi and I treasured every minute we had with them. They are Megan and Tabitha’s uncle and grandpa in every sense that matters. Gail and Em are their grandma and cousin in every sense that matters.

Terrible, awful things happen to the best people. What was done to Katie has not yet even been tried in court. I want to make sure that people remember that Katie lived. This little girl I’ve never met and heart breakingly, never will. Whilst the vaccine trial goes on, remember that this is going on too. Although, that day, we never talked about the trial it was in their eyes and gestures. How could it not be? For the two families that have come together into one, I wish there was some way – any other way – we could’ve become as close as we are now.

At the end of this month, the motions that are being heard now – those motions to suppress the confessions of Katie’s murderer – will be concluded. We must hope that justice prevails. Katie, my niece I never met, deserves no less.

Non, je ne regrette rien

13 Jun

Right. This is it. Absolutely the last time this subject gets raised on this blog. Comments will not be enabled on this post.

It’s the last time because I’m sick to death of hearing about it, thinking about it and discussing it. If anybody else wants to carry on discussing it – be my guest. But you won’t do it here.

First and foremost is that you understand that I regret absolutely nothing. I retract absolutely nothing. I apologise for none of my words and actions. I meant every single one of them and stand by them.

It was made clear to me by Larry that I wasn’t welcome in what he thinks of as neurodiversity. That’s fine, I can live with that. What he failed to specify, other than insults and vague allegations was _why_ I, and a loose group of people referred to as ‘the parents’ weren’t welcome. We sought no leadership. We sought no setting of the agenda. We just wanted to do our bit.

I asked calmly and politely – at first – what it was we – I – had done specifically. No answer, but more snideness. Eventually I realised that nothing of any substance would come from Larry. I retreated after speaking my mind about what I thought about Larry. It wasn’t good but it was accurate. It was my opinion.

After a week, I came back to my blog and explained my thoughts on the whole matter. Things were calming down. I avoided Larry. I didn’t seek out his comments, thoughts or opinions. Then yesterday I come back to my blog on a thread that is indeed heated but respectful and what do I find? Three long comments from – you guessed it – Larry. More of the same insults, murky accusations and pompous posturing. I let him have both barrels. He deserved it.

So – bullying. One ‘Donna’ who’d been on this blog many times and doesn’t like me or what I have to say accuses me of bullying poor poor Larry. Let me remind people who was ‘chasing’ who. I want to have no interaction with Larry if I can possibly avoid it. He sought it out and left three long, whiny, disrespectful comments. I’m not easily provoked but that did it. If anyone wants to avoid bullying I’d suggest to them that chasing after the ‘bully’ bleating ‘please notice me’ is not a great idea. I’d also like to offer a tip to would-be bullies: it seems that you don’t have to do any chasing these days. Apparently people coming in to your turf and running their mouths off, making empty accusations and calling you names is OK but if you respond in kind, they can cry about what a nasty bully you are.

As I said in my previous post – I’ve been used as Larry’s punch bag already. Not any more. If Larry – or anyone else – comes to my blog looking for a fight then they _will_ get one.

Humour. Its a personal thing. Some people don’t like other peoples humour. That I can understand. But suggesting that someone elses sense of what’s funny is inherently wrong because they don’t share it? Forget it.

First I’m told what I can and can’t blog about. Now I’m told what I can and can’t laugh about. What’s next? Anyone want to let me know where my black shirt is? Double plus ungood.

I really am beginning to wonder if the whole idea of _some_ autistic people wanting allies is true. We had a chance to start something great here. As far as I’m personally concerned, that’s dead in the water. Do you want perfect parents? We might not be perfect but we’re better than CAN parents. You had a chance to work with us. Make us better. Instead you’ve driven this one away for no better reason than one suspicious man couldn’t reign in his ego.

At least 20 people have emailed me to tell me that Larry has been like this since forever. They think he is jealous of the fact that I and other parents have been interviewed. He confirms this by stating that autistic people should be interviewed, not parents. He’s right, they should.

In early April this year I was contacted by a journalist from The Observer in the UK. She wanted to speak to someone connected with the autism advocacy movement. I told her she’s be best speaking to autistic people in the UK. I told her I would mail her details to a few UK autistic people I knew so they could speak their piece. True advocacy, right from the horses mouth. One of those I contacted was Larry.

He never replied to me and he never contacted the journalist. I know this as she contacted me increasingly desperately as no one had contacted her. She didn’t want to hear my voice, she wanted to hear from autistic people about autism advocacy. Nobody, including Larry, could be bothered.

Remember this next time you hear Larry banging on about rights and agendas. He’s full of hot air.

And that is that.

From now on I blog about what I want to blog about. That will mostly be about autism related quackery. Larry is banned from commenting on this blog. Any comment that touches on Larry in any way or on any of these discussions will be deleted.

I don’t consider myself part of neurodiversity, although I am clearly neurodiverse. I will gladly stand with autistic allies – both autistic people, their parents and professionals – who want nothing to do with a cure and who want rights for autistic people to come first in autism advocacy. I will not stand with anyone at all who wants to accuse me of wrong doing without any substance to their claims or who wants to dictate what I should and shouldn’t talk about.

On being different

10 Jun

I think a lot of people operate under the misconception that there is this group called ‘NT’ and this group called ‘ND’ and that all in the ‘ND’ group are the same as each other. Not so. The way I was taught to think about neurodiversity is that it is comprised of a group of people with differing neurologies. So to me, anyone who’s difference is primarily stemming from a neurological difference belongs in that wider grouping. Autism. Schizophrenia. Learning Disabilities (retardation in US-speak). Tourettes. OCD. Bipolar. Blindness (where the blindness originates from the optic nerve). Down Syndrome. Epilepsy. Dyscalculia. A hundred more I can’t think of right now.

Autism is not the most or the least of these subgroups encompassed by neurodiversity. It’s simply one amongst many.

This is what I was taught about neurodiversity and this is what I hope it is about. If it isn’t then I have misled an awful lot of people over the last 3 years, including myself.

I carry one of the diagnosis’ listed above. I have type 1 rapid cycling bipolar disorder (Wikipedia). The first time I can remember feeling that I was decidedly different in outlook, thought patterns, behaviour and generally _being_ was when I was about 9 – 10 years old. However, I have not carried an official diagnosis anywhere _near_ as long as that. I’m nearly 40 now. 25 – 30 years ago, just as with autism, there weren’t the same amount of diagnostic specialists who knew the signs and symptoms. Meh. Such is life. It’s well managed now which is a massive relief.

I don’t want to wallow in myself too much but I want to provide some context for how I feel about neurodiversity and how I felt last week when everything kicked off.

Occasionally – and not very often – I may need to take a neuroleptic. These are serious drugs, administered (hopefully) with great care. There are very good reasons why they should be prescribed as an absolute last resort to autistic people.

That said, for people with _my_ neurology they are sometimes necessary.

I had an email exchange last week with someone who put forward the idea that the continued use of neuroleptics to autistic people was an issue of great importance that needed to be discussed. This is something I entirely agree with. My own medication is carefully reviewed every 2 months. I hate taking pills and the less I have to take, the better.

In the course of this exchange, the phrase ‘brain damaged’ was used in a way that seemed to indicate to me that those who may have to use neuroleptics have damaged brains. I was somewhat taken aback by this. My immediate association was the idiotic null comparisons of John Best of autistic people having ‘rotting brains’. It seemed to me that using overly inflammatory and denigrating language such as this was not a good way to promote the idea of neurodiversity. I fully accept that neuroleptics are far from ideal and that there is good emerging science to indicate chronic overprescription of neuroleptics to autistic people but the use of the phrase ‘brain damaged’ was a step too far. Was this really how this person saw me?

I don’t think that this person meant to be offensive in any way. But let me tell you a story.

My grandad (now dead) served in WWII and had a British Asian man in his regiment. My grandad used to refer to him as ‘Chinky Charlie’ until one day I asked him why he was called that – it was then I learnt that ‘Chinky Charlie’ was of Chinese descent. His other nickname was ‘Yellow Charlie’ apparently. I was really shocked and told my grandad that I considered that racism. I asked him what ‘Chinky Charlie’s’ real name was – he couldn’t remember. But he said ‘he didn’t mind – he laughed it off’. I’ll bet he did. What option did he have?

My grandad didn’t _mean_ to be racist. He wasn’t intentionally trying to denigrate his fellow soldier in terms of his race. He also told me what a deep respect this man carried amongst the regiment. However, the intention – or lack of it – is irrelevant. He _was_ being racist. He was characterising someone on their race. He couldn’t even remember this guys actual name!

I hope my point is clear. Words matter. Their intent may not be to offend (its easy to tell when someone is purposefully being offensive) but if neurodiversity truly is an umbrella community for a wide variety of differing neurologies as I thought it was then care is needed. We don’t have to tip-toe around each other (that would just become a PC nightmare) but the willingness to not generalise and not use comparisons that a truly ignorant man like John Best would use are not only necessary but vital.

Lenny Schafer’s Delicious Cheap Shot

24 May

It’s no secret that I don’t think much of either the reasoning powers, nor general behaviour, of the collection of individuals that populate David Kirby’s ‘Evidence of Harm’ Yahoo Group. Every time I think they can’t surprise and disgust me more, they manage it.

This is the group of people from which sprung an anonymous email referring to Megan as a ‘little bitch’. This is the group of email who have attacked autistic people viciously and repeatedly. It beggars belief that a group of people who are parents to autistic people could be so disrespectful to autistic people when they claim to be ‘the autism community’. But then, how could anyone expect anything better from parents who refer to their own children as ‘dull witted’.

A member of the EoH group has compared my daughter to a monkey when i described how well she was progressing. This same member later said on his own blog:
….My wife bought too many bananas so I’ll send some for your daughter …..

and followed that up with

…Perhaps you can teach your daughter to swing from tree to tree…

This is ample evidence of the sort of people who infest this particular corner of Yahoo.

However, if more proof were needed, today Lenny Schafer, creator of the EoH Yahoo Group established once and for all the level of disregard for children that the EoH group has.

Schafer posted this story to the EoH list today. It concerns a scumbag who has over 100,000 images of child porn in their posession. As part of this scumbags defence, he is claiming he is autistic. Take a place in line behind Cho, scumbag.

Schafer, however, altered the headline so it read:

Prison Ordered for NeuroDiverse Man With More Than 100,000 Child Porn Pictures

and offered this commentary, accompined with a link to this site:

OK, so I added “ND” to the headline to make it more politically correct for all those mercury apologist ghosts lurking on our list. The ND sword cuts both ways. Sometimes you just can’t pass up a delicious cheap shot. Lenny

A delicious cheap shot.

I’m so very happy that Lenny Schafer finds the idea of utilising the torture, rape and suffering of children as an opportunity for a delicious cheap shot as in any way an acceptable thing to do. Schafer doesn’t like neurodiversity. Thats his right. He should campaign against it as hard as he likes. However to utilise the suffering of children in his demonisation is beyond sick.

Lenny Schafer might want to look to the top right hand corner of this website. In it he will find a picture of four year old Madeline McCann, a baby girl who was abducted from her holiday home three weeks ago. That picture has been on my site for almost a fortnight now. Its on the website of many UK residents.

No doubt Lenny Schafer and the antivaccinationist ignorati who surrounds himself with will pat themselves mightily on the back for getting under my skin so much. Because they have. I don’t think you should ever make light of the abduction, rape and torture of children.

I put up that picture of Maddy in the hopes that maybe – a slim hope – someone who knows something might see it and do something which would mean she was returned to the arms of her parents.

I have also colluded with people Lenny Schafer considers friends in the relatively recent past after it was made known to me that an author of an autism book who was friends with a DAN! doctor was a paedophile. I did this to ensure no children would fall into these people’s clutches.

You made your cheap shot Mr Schafer. I hope you found it ‘delicious’.

Thoughts ‘n stuff….

18 May

I haven’t blogged much over the last couple of weeks. I’ve got 4 large projects on at work and truth be told, after long days slaving away over code and imagery and managing peoples expectations I really don’t want to sit in front of a PC in the evenings either.

This is a shame as there’s much to blog about in the world of autism, the evil ND [twirls moustache evilly] and notably autism and the good old feeling-like-an-old-friend mercury uh, connection. I will blog them (an exercise which is becoming increasingly like prodding a dead fish with a stick as it floats on the surface of a scuzzy old pond) but right now I’m as offline as I ever get. Luckily Dad of Cameron is still happily prodding away – most recently at the new Jim Adams study. And of course The Hub is still going well. Also, this site’s daily visitors are still climbing – certainly more than some other sites are. And hey! – by the look of the trends of a certain site it looks like the message about DAN! is getting through.

Anyway, enough cheap gloating. MOM-NOS, in a moment of madness put me forward for a ‘Thinking Blogger’ award.

Thinking Blogger Award

The official rules for participation in the Thinking Blogger Awards meme are as follows:

1. If, and only if, you get tagged, write a post with links to 5 blogs that make you think,
2. Link to this post so that people can easily find the exact origin of the meme,
3. Optional: Proudly display the ‘Thinking Blogger Award’ with a link to the post that you wrote.

MOM-NOS explained her reasons for nominating me as follows:

When I was new to blogging and new to the concept of neurodiversity, Kevin scared the daylights out of me.

And some people say neurodiversity is a cult – I tell you, after me scaring the living shit out of people and browbeating them into submission, its the work of minutes to get them to sign over their souls to the evil Neurodiverse in blood – MWAHAHAHA!!! come to a rational decision with no coercion at all (free tshirts!!).

In all honesty, being nominated for this particular meme/award by a blogger such as MOM-NOS is humbling. There are several writers on the Hub that I love to read. Amanda, Kathleen, El Diva (for the snark), Mike Stanton and MOM-NOS. This is by no means to suggest the rest are terrible but I would happily buy books written by these people (which is why I excluded Sue from that list – I already have bought a book written by her).

So I will wallow in self indulgence on this, the recognition of my dual good nd/bad nd personality and waffle on for a bit.

Blogging is an odd thing. Its not really journalism (although Kathleen is getting about as close as its possible to get) and its not just a web site. I started this four years ago next month and (as Brad has graphically – and somewhat redundantly – illustrated) it charts a period of my life that has gone from utter ignorance about autism and science to a stage where here, now, I have friends I consider important to me who are either autistic, live thousands of miles away, live a few miles away from me etc. I’ve been quoted in scientific journals, been interviewed, swap emails with scientists and doctors who are active in the autism community.

Damn. How did that happen? I’m not a particularly skilled wordsmith. My grammar sucks donkey balls. I veer wildly between icy, brittle British overpoliteness and the written equivalent of a cudgel. Meh. Such is life.

None of this is a cue to tell me how great I am. I already know I’m not interested in fishing for compliments.

So what did I do to deserve a ‘thinking blogger’ from someone of the written quality of MOM-NOS?

I *hope* what I do/have done is become part of a blogging community of a wide and beautiful diversity of humanity. I don’t know about you Dear Reader but my feed reader is full to bursting these days.

What I hope I have done – what I strive to do every day – is to offer a set of tools for this community to become louder, more communal, to reach out to the untapped natural audience ‘out there’ who believe in equality, diversity and optimism. When I die, my epitaph can read – Here Lies Kev: He Incited An Angry Mob. Thanks. You Bastard.

Enough. I’m supposed to nominate five blogs that make me think. This will be tricky as a lot of my favourite blogs have already had this meme/award bestowed on them. Am I allowed to replicate? I better not.

1: Nidahas is a web development blog run by a Sri Lankan friend of mine – Prabhath. His was the first blog discussing web development I can recall that included the fact that its author came from a developing nation. Insights galore.

2: Juicy Studio is a web dev blog that concentrates on accessibility issues. Gez (the owner) and I have known each other online for what must be about 6 years now. Good grief. Did I say he’s a genius? No? He’s a bloody genius.

3: Dr Crippen. Great name, great blog. If the NHS ever gets sorted out it will be in no small part down to the efforts of John. A one man anti-Hewitt machine.

4: Joel Smith. My first encounter with Joel’s words was via the horribly necessary list of killed autistic people. Shocking and eye opening. Joel writes calmly. I admire that as I struggle with it.

5: Mike Stanton. Again, another calm writer. Dammit. I really must learn how they do that. I often find myself back at Mike and Joel’s sites cross-referencing things.

So – that’s it I think. Back to my temporary hibernation.

Time for changes

23 Apr

For those that missed it, my site got zapped over the weekend. I went over my bandwidth allowance. I usually shift about 14-15GB per month but this weekend I went over my 15gb limit – a whole 7 days early. Yikes.

The culprit was the Chelation video which shifted 5gb on its own and was pushed over the edge by getting linked from Orac. Not his fault at all, I should’ve been keeping a closer eye. Normally, the 5gb that the video took would’ve seen me through to the end of this month but this time I was flatlined.

My host is a good guy and offered me a gig for free to get me through to the end of the month but a gig only lasts me 2 days so I bought another 5gb per month, taking my monthly bandwidth allowance up to 20gb. This will give me a little breathing room.

However, I have to restructure some stuff that’s on here. One of those things is Meg’s blog. I’ve already moved it but in order to preserve its privacy I need you to do a few things if you want to keep on (or start!) reading it.

First head to the WordPress.com signup page and create an account. Just select the ‘Just a username, please.’ option and that’s all you need.

Second, when your account is created, mail me your account name and the email address you specified when you signed up so I can add you as a user of Meg’s blog. Only registered users can see her blog and only I can add registered users.

That’s it, that’s all you need to do.

Other changes:

I may be redesigning this site to reduce the imagery. The less large files, the more I can keep my bandwidth drain lower.

The Hub will be redesigned. I want to make it work harder for users and I need to organise how it lists members better. I think there are now too many members to just have one big list. It needs a bit of categorisation.

Easter bank holiday

10 Apr

Slightly under the weather

16 Nov

My apologies for the quietness on the blog over the last few days. Both my blog and I have been under the weather.

Whilst my illness is on the mend, the blog has taken a bit more of a battering. Nobodies fault, just a chance and unfortunate occurrence of a mysql error.

Sadly, it appears I’ve lost a few comments both newly made and from old posts so my sincere apologies to those who’ve commented in the last few days to see their comment disappear into the ether.

Thankfully, no posts were lost but its still not worth restoring a backup as the new comments were never backed up. If I’d not spent the last few days away from the PC I might’ve noticed and backed up but….such is life.

Anyway, I might take a few more days to get fighting fit and then its back in the saddle. There’s been a few things happening of late that need comment but they’ll keep for awhile.

Megan’s Private Blog Has A New Author

15 Oct

For those people who have access to Megan’s private blog, you’ll know that I’ve failed to keep it as up to date as I should. Time pressures and all that.

Anyway – that blog now has a new author – my wife :o)

Naomi and Megan hugging

The access codes are exactly the same as they were before but if anyone has lost/forgot them then just let me know and I’ll mail them to you again and if anyone wants to join that private list, feel free to ask and I’ll post you the details you’ll need to access it.

Open letter to Raun Kaufman of Son-Rise

30 Sep

I read your press release today Mr Kaufman and I just wanted to pass on a few thoughts to you. Your PR piece for an upcoming tour of my country begins with:

Parents of autistic children around the world face daily prognoses of hopelessness. Recent media stories highlight this: In April this year, Alison Davies, 40, leapt to her death from the Humber Bridge in northern England, taking her 12-year-old autistic son, Ryan, with her. In the U.S., Karen McCarron, 37, killed her three-year-old autistic daughter, Katherine, by placing a plastic bag over her head and then tried to overdose on over-the-counter medication a day later. She faces two charges of first-degree murder.

Every day around the world, parents like these are told that their children will never speak, attend a typical school, make friends, or even learn to dress themselves. Raun K. Kaufman tells parents something very different. He offers hope, help, and a concrete blueprint to reach “unreachable” children.

I am sickened and angry at your attempt to ‘justify’ two murders by passing them off as the end product of some alleged hopelessness. Ryan and Katie were murdered. Nothing – I repeat, _nothing_ – can justify that or make it understandable and your attempts to coerce emotional empathy from people by using their murders in so baseless a way is an appalling and reprehensible act of moral cowardice and cynical emotional blackmail. Your message seems to me to be clear: come hear me speak or you’ll end up killing your kids.

I’ve had the honour to become close with Katie’s Grandad and I would like to speak from the position of adopted family: this is not appreciated, wanted or deserved. After Katie was killed, Mike contacted Stephen Drake to let him have some photos of Katie. The terms of their use was made clear:

They do not wish for the photos to be used in any way suggesting Katie’s death is associated with a “problem” arising from a lack of services, or a symptom of “desperation” felt by other families. Using Katie’s picture in these ways would only be an insult to her memory and cause more pain to an already grieving family.

Whilst you stopped short of usurping photographs of Katie, you did the next worst thing and usurped the memory her family have. What gave you this right other than the ‘right’ you took upon yourself to emotionally blackmail parents?

You owe the family an apology Mr Kaufman. I hope you can make it sound as sincere as your pious whining about hopelessness.

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