So why do Disney World?

Why did we put ourselves though what I had a fair idea would be a difficult flight?

Here's why...
That makes sense, doesn't it!

If anyone's still not convinced, have a look at a few more:

See how excited Goofy is to meet my children! I bet that made his day.

He's such a handsome fella!

Look at that sky! After a two week long summer at home, we relished the perfect Florida weather.

This little guy was so happy. He absolutely loved the parks.

Lady loved the Pirate Pool at our hotel. She was a bit disappointed that we only went swimming once.

Duncan got so much enjoyment out of meeting the Disney characters.

I won't write a long, detailed report of our time in Florida. Well, I might do so later, but I'll give fair warning so people can skip those posts.

There are a few memories I want to share now though.

Before we left Ireland, I'd drawn up a detailed plan for the week, having researched the parks and working out what attractions were unmissable and what we could live without, as well as what would be suitable for the different tastes of various family members.

We all agreed that the holiday had to begin with a trip to the most famous park of all, the Magic Kingdom, which looked beautiful in the sunshine. Right away I went to the guest services desk to get a GAC (guest assistance card) for Duncan. He wanted to go straight to Toontown to watch the Barnstormer. After all, he'd been poring over the park maps for weeks and looking up all the rides on YouTube, so already knew what he wanted to do and see.

So going with me to get the GAC didn't sit well with his agenda and he was rather fussy as I approached the desk and told the nice lady what I wanted, reaching in to pull out some relevant documentation from my bag as I finished speaking. She immediately told me there was no need (to show her anything) and within a couple of minutes, she'd provided me with the card and a bit of red tape for the stroller, to show it should be treated at the attractions as a wheelchair. Result!

Over the week, the card was so useful, as was the ability to let Duncan sit in his stroller in the films and shows, and until he was just ready to board the rides. He was much more settled than he would have been.

The card allowed us to use Fast Pass entrances, or to queue away from the crowd, and always for a very short time. The longest we waited for any ride was about 15 minutes, for the excellent Toy Story Mania (amazing blend of high tech 3d and old skool pull-ball shoot-em-up with theming based on all the classic toys and games- one of the best) and that was only because there were 3 or so other groups with disabled people in front of us.

We went on every decent ride in each of the parks. Duncan's favourite was It's a Small World, and it's a testament to how much I love him, that I rode it 4 times with him.

He also loved the Carousel of Progress, a strange attraction for a boy his age to enjoy, being as it is, about the technological advances available to an American family at different points in the 20th and early 21st centuries. On one scene, there's a cuckoo clock on the wall, and it goes off, making the whole 30 minute, dialogue heavy show desirable to Duncan. Gordon proved his love of our son by taking him there 3 times.

Lady has developed a bit of a taste for the bigger thrill rides, and went on 2 of the bigger roller coasters, Big Thunder Mountain and Space Mountain. Thomas does not like coasters. He went on the kiddie coaster Barnstormer with me, and was utterly terrified. He asked me to give his opinion on my blog;

The scariest ride that I went on was Barnstormer. The least scary ride I went on was the Carousel. My favourite ride in the Pixar studios was Toy Story Mania.
That was from Thomas.

Duncan opted to just watch these things and loved it. After months of looking at the videos and recreating them as best he can on Roller Coaster Tycoon, as well as drawing them and setting his train tracks up to resemble them, he was once again in front of the real thing.

The staff were unfailingly delightful, smiling and helpful. We were always nice to them too of course, and very grateful for all their assistance. Once I was with the boys while Gordon spent some time with Lady. They were hungry so I took them to a cafe, ordered a couple of children's meals and tried to figure out how to bring them to a table while pushing Duncan. One of the staff offered to carry my tray, which helped so much.
We never encountered that kind of positive, generous attitude in Disneyland Paris.

We loved all of the parks for different reasons. We loved the lush Animal Kingdom, the gentler pace and staff who took the time to talk to the children and point out little trails and tasks they could do, the utterly gorgeous and beguiling effigy of Everest at one end of the park, and the musicians giving children a chance to bang their drums and have a go. Duncan told me his 2nd favourite ride was the safari bus. Gordon and I took turns to ride Expedition Everest. Just wow.

The Hollywood Studios park was bunged with folk there to see their favourite soap stars, an event which despite all my planning, I'd failed to notice clashed with our appointed day there. But it didn't matter, they were there for the (to us) unfamiliar celebrities, while we wanted rides and shows and our needs didn't clash. We watched the studio's spectacular Fantasmic evening show one evening. Duncan slept through the whole thing.

I'd love to go around Epcot without any children some time. There's so much to see and try there, if you can take your time and savour it all. But as it was, we all enjoyed the Test Track ride (fast, thrilling, just a bit too much for Thomas 2nd time around) and each of us but Duncan went on Mission Space (the easier option) which might be my favourite ride of all. It was especially good having watched the shuttle Endeavour launch just before.

Duncan was keen to go to Germany in the World Showcase section of Epcot, and kept talking about the cuckoo clocks he'd get to see there. I was worried that there wouldn't be any and he'd be disappointed, but he knew better than me.

The shop had a wall full of clocks and Duncan was in his element. He stood watching, enthralled for, oh, about five minutes and then the trouble started.

He wanted me to buy one of the clocks. These things started at about $200 and even if I was willing to spend that sort of money (I wasn't) they're not exactly the kind of thing you can throw in your backpack and carry around while touring a theme park. He started to kick off, so I had to take him out. I made up a story that Daddy bought the clock, and the lady in the shop put it in a box, took it to the post office, and sent it to Santa who will bring it to him for Christmas. Yes, I lied directly to my child.

(I have to get a deal on a cuckoo clock for Christmas now!)

He was not happy for a while after. I wrote out what I'd said and read it to him, letting him hold the paper. He just couldn't stop thinking about the clocks and wanting to go back to see them and to get one, but I couldn't let him do that. At least when we'd been in, the shop had only just opened so we were the only (potential) customers in it.

Again, we split up and I took Duncan ahead while Gordon took the others to watch a film about France (amazing and beautiful-Gordon, boring-Thomas). We ended up in the England bit, and guess what Duncan found in the toy shop- a load of Thomas the Tank stuff. He played for a while with the display train set and when he asked for a $14 wooden train, I complied and bought it, just to help take his mind off the clock. The man in the shop took the train to a back room to cut the packaging off for us, and Duncan tried to follow him. I found a toy policeman's hat, popped it on and said, "Stop in the name of Plod!" (It's a Noddy reference.) Duncan, either annoyed or mortified, gave me a look of disgust and said loudly, "I hate it when you do that!" prompting all the nice mums in the shop to look at me. As usual.

Just once I sort of forced Duncan to go on a ride when he didn't want to. In Soarin', you sit in a row, raised and suspended over a huge screen showing footage of California scenes from the air, and fans blow and you swoosh around giving the sensation that you're flying. He panicked when he saw the ride, thinking it was a coaster but I got him on it, knowing that he'd be fine when it started, and he really did love it, grinning and pulling his feet up when it seemed we were skimming the tops of a forest. As it ended, he said to himself (a quote from a film) "It was the best birthday ever!"

We went to out hotel pool one afternoon, and intended to go to the Blizzard Beach water park for a few hours one day, but it was just a wee bit too cool and windy for a few days, and then we were too caught up doing other stuff. Lady was disappointed by the omission, but didn't feel too bad since we were still having fun in other ways.

We bought lots of take-aways in the evenings and ate in the apartment as we don't do restaurants with our family, not yet anyway. We ate at a few of the park counter service places, but usually in 2 sittings so someone was able to keep Duncan busy while the other ate. A few places sold these huge smoked turkey kegs, very Friar Tuck. We liked those, even Duncan managed to gnaw on one for a bit, and since he mostly ate chips (fries) ice-cream and candy floss, his ingestion of a bit of protein pleased me greatly.

On our last evening, we went again to the Magic Kingdom to watch the fireworks. We were just in time to see the night time parade, with the cast and floats all lit up and looking so pretty. I pushed Duncan in his stroller to a small gap along the route, but he pushed the woman standing slightly in front of him, right on her bum. Oops! I apologised instantly, and catching sight of his badge, she laughed and said, "oh my son's autistic too!"

The fireworks were wonderful, but the boys had both had enough after about 10 minutes, so we walked back towards the park exit, looking around every so often to see the show. We made it to the exit just as it all ended and were able to get on the monorail (we loved this) to the car park right away before the crowds.

So, this seems to be a good type of holiday for us. Duncan enjoyed keeping a map in his hand at each park and knew what he wanted to see and do. Coming home, I was already thinking about what we could do for our next holiday, whenever that will be. Top contenders now are Legoland Windsor (and seeing our friends in London, brace yourselves) and Drayton Manor Park in the Midlands; it's even got a Thomas Land!

Lung Cancer in Northern Ireland

This may be off topic, but I wanted to highlight an interesting article on lung cancer research in last Friday's Belfast Telegraph. The paper seems to run a decent health section, with fewer credulous reports than the average regional rag, at least since they stopped publishing nutropath Jan de Vries self-publicising nonsense. (Miche, what was it he charged for a 5 minute consult, during which he was abrupt and dismissive, and insisted that you buy one of his many books and herbal concotions?)

The paper edition carried a photo of the researcher quoted, and damned fine he looked too (biased...moi?) It's always good to read positive stories like this, and hopefully people in the region will have more hope for a better and longer life with lung cancer thanks to the drug trials now taking place in Belfast and around the world.

Flying Virgin

We're back home form our trip to Florida. Everyone had a great time and we made many wonderful memories.

I wrote a short post from Gatwick airport before boarding the transatlantic Virgin flight. I may not have been so chipper then had I known what faced me for the next 11 hours or so.

Lady, Thomas and Duncan make themselves at home in the V-room.

The Virgin Atlantic staff were all wonderful and as helpful to us as possible. We were able to check in at the Premium Economy desk and were offered a couple of seats at a bulkhead with 3 more in a row across the aisle. I thought this would work out well for Duncan; a bit more space and no-one in front to be bothered by him pushing against their seat back. Wrong!

The boys playing with Lady's Gameboy just before we boarded. Duncan sits in his indispensable Major stroller.
(The Gameboy was lost somehow in getting onto the flight, and hasn't been seen since.)

Duncan expected that after a fun time on the V-room, we'd simply jump in a taxi and in a matter of minutes, find ourselves at Disney World. After all, that's what had happened when we went to Paris. He was adamant that he wasn't getting on another aeroplane and was saying, "no Virgin!"

I explained many times, just as I'd done at home, that we had to fly a long way to reach Disney World. He consented to board the plane and we tried to get settled in before most of the other passengers joined us. He was still a bit fussy when they were walking past and one charming man strided past, saying to me, "I'm glad I don't have to sit beside him." WTF? Jeez man I can understand that you and every other passenger would prefer on a 9 hour flight, to sit away from the loud, struggling boy, but do you really have to say it aloud to his already harassed mother? I thought of many fruity curses to throw back at him, but at least I had the decency to merely think them.

The badge I made for Duncan, and which he quite happily wore around his neck throughout the holiday.

Sitting beside us in the bulkhead seats, were a man with his 2 daughters aged about 4 years and 4 months. He was nice and understanding and his girls were a couple of sweethearts. Across from us were Gordon with Lady and Thomas, both of whom were perfectly wonderful throughout. They can see when I've got my hands full with Duncan's needs and curb their own devilment in response. In front of them was a row of three people in their fifties. The woman nearest basically stared at Duncan and me constantly for the first 4 hours or so of the flight. The couple beside her didn't stare for so much time, but made up for it with intense evil eye, head shakes, scowls and tuts.

Duncan was hard work. He wanted to use the toilet almost as soon as we'd taken off even though I'd taken him just before, his teeth were hurting as I think he'd bitten one of the hard lollipops I'd brought for them to suck during take-off and landing. The noise and crowds were obviously bothering him, a matter helped little by rubber neck woman and the other staring eyes. He cried a bit and shouted out a few choice angry phrases. At one stage the baby next to us cried for a while (as babies quite reasonably do) but Duncan matched her for pitch and bested her in volume. Oh dear. I tried to distract and comfort. I got him to watch Wall-E for a while, and we looked at some books. I drew a few pictures and coloured a rocket picture book. I offered the ear defenders I'd taken, and a blanket, cap and eye mask to reduce the stimulation, but all were refused. I worked really hard the whole time, and bless him, so did he.

Once when the grumpy two-some next to us gave a particularly nasty look at his distressed sounds, I called to them, "Please, he's doing his best." They lent back to avoid me, and I spoke to rubber neck woman, asked her to tell them what I'd said and added, "this is hard for him as he's autistic." She said that they didn't speak English. They were obviously fluent in the body language of disgust though. Gits. Rubber neck woman took the time to exclaim that I must be exhausted every night after looking after Duncan, after all, as she said, "I'm exhausted just watching him!"

"SO LADY, LOOK THE HELL AWAY, TURN YOUR DAMNED TV ON AND WATCH BATMAN OR SOMETHING," I felt like replying. Instead I explained briefly, as I really didn't feel like chit chat, that he was under undue stress and normal days are nothing like what she was seeing.

Eventually after about 6 hours of this struggle, he consented to wear Gordon's super duper noise-reducing headphones. By then it was about 10pm UK time and we'd been awake since 5am, so he finally settled and slept for a few hours. Phew.

Asleep, at last. Do I look worn out or what!

At Orlando International, we flew through customs and immigration, encountered staff who were all pleasant and helpful and I got a kick from being called ma'am. A few hours later than expected, we arrived at our hotel apartment, finding it large, comfortable and clean. It's a pity the few hours sleep Duncan had on the flight sustained him for a night of fidgeting and bed hoping!

And just in case any one's wondering, on the flight home, we arranged to sit in the rows of 3 seats alongside the galley area, thus reducing the number of passengers around us. Duncan sat between Gordon and myself while Thomas and Lady sat behind us. It was an evening flight and we'd been on the go all day. Duncan wore his cap pulled low over his eyes, ear defenders and had a blanket around his shoulders. I'd changed him into his pull-up nappy and removed his shoes. He cuddled me and Gordon gently stroked his feet and he fell asleep before the plane had even left the runway, remaining asleep for the entire journey, Yeah!

Holiday Post 2

So we're in Florida, and for the first 2 days we had very high temperatures for the time of year, then they all started chittering on the local weather stations about The Big Chill, and it's gone all the way down to 65 deg F (18 deg C for those of us who prefer SI units). It's perfect for us.

We managed to witness the shuttle launch on Friday evening, though we were all shattered. But you just have to make the extra effort to see something so amazing. I just couldn't stop thinking that there were people inside that huge cylinder of fire bursting into the sky. It was terrifying and thrilling just to watch.

The parks have been great fun. We got a special pass for Duncan and the staff here are so lovely and can't do enough for us. We're really enjoying that USA friendliness.

I've only booked a few minutes on the 'puter here and then I'm going to get a few coffees to bring up to the room for breakfast before we all head off to Epcot for the 1st time. I'm really looking forward to it.

Hope all the gang at home who read this are OK and I'll call later to find out about G and the baby who'll be out any minute now!

Live Blogging the Holiday!

We've been up since 5am, got the taxi to the airport at 5.20, landed in Gatwick at 8ish and are now in the Virgin Vroom, whiling away the hours until we can board our Orlando bound flight this afternoon.

Duncan was a bit worried on the flight here. His ears hurt and he panicked a bit about landing, calling out loudly a few times that we were going to crash when we landed. He wasn't interested in my reassurances that we had a very able pilot looking after us. When we did land (very smoothly) he grinned and said, rather surprised, "we didn't crash!"

The Vroom is perfect for this gang. Gordon is on kid duty for now. There's a soft play area where the boys are currently launching themselves off foam structures and crashing into each other. Thankfully, there are no other children in it!

We've had bacon rolls and coffee, and the children have helped themselves to juice and croissants. We'll be here for a few hours yet, but I can think of worse ways to spend the morning. There are loads of terminals and we've all been checking out our favourite sites, the play room id helping burn off the crazy amounts of energy the bunnies possess, there are a few games consoles, and as much food and drink as we want. It's well worth the fee to come here.

So anyway, we'll arrive in Orlando at 6pm EST, get the hire car and head to the hotel/apartment thing. Tomorrow we'll hit the mouse kingdom, bur best of all, we're lucky enough to be in Florida while a shuttle launch (Endeavour) is planned. Obviously, no matter how tired we'll feel, we're going off to get a closer look at that tomorrow evening!

I'll update when I can.
Keep well, and don't let the cold, wet weather bother you too much!

Politics of the people

People can change things. America has shown us so. I stayed up really late on Tuesday night/Wednesday morning to watch the results of the US presidential elections, enjoying the company of some fellow bloggers. I was delighted with the result. From what I've seen and read about the candidates, Obama is by far the better in his policies, aims and intentions. People have chosen the candidate who is clever, accomplished and well organised. His campaign was fantastic especially when compared to the nastiness of McCain's. I'm glad there will be no more McCain "my friend" speeches nor any of his nonsense about autism, and I am glad the majority of Americans showed their opposition to the global screw ups his party have made, and that awful Palin woman.

It's obviously wonderful to have an African American family taking up residence in the White House. I think that people all over the world who are of a minority race in their home country, will be happy with this. I know Gordon has been deeply affected.

I listened to Obama's victory speech live and warmed to his inclusive address to people of all racial backgrounds, to gay and straight people, disabled and non-disabled. How about that?!

But, closer to home, the Irish government has just announced their disgusting decision to scrap HPV vaccines for teenage girls due to budget shortfalls. Even if times are hard, this is a terrible decision and is a real let down. The HPV vaccine is the only medicine yet developed that acts as an effective preventative measure against a form of cancer. I live in Northern Ireland so my own daughter will still be vaccinated when she's old enough, but what about all her cousins? I have 5 wonderful nieces living in the Republic, they all deserve this protection too.

"An angry person" by Duncan. It's how this decision makes me feel.

Via Red Mum I read that people are being encouraged to write to Mary Harney, Minister for Health, telling her how they feel and attaching a photo of their daughter (if they have one). We've seen that when enough people are motivated to make a change, it can happen. Lets see if the Irish people can effect this small but important change.

It's a shame about California and Prop 8 though.

Fun all over the planet

I took the children to a travelling fun fair last night in Belfast. Duncan was especially keen to go, associating Halloween with Planet Fun, even more than (as he calls it) "tricks and treats".

Gordon's been at a conference since Saturday. I asked Duncan if he would write him an email. He typed the 1st sentence and dictated the rest, and this is what he said:

Dear Daddy

Now Duncan is a cute boy. Daddy was a good man.

Duncan is drinking hot chocolate and playing Dogz 4 like a demo.

Tonight is Planet Fun from Halloween in Granda's apartment. We're
going to look at the Mad Mouse from Halloween.

Duncan loves Daddy the best boy in the whole wide world.

Gordon was able to receive his emails while sitting in a meeting, and somehow from his response, I think he liked it!

I love you Duncan- your letter made me so happy.

I hope you have a fantastic time tonight at Planet fun

I love you very much

Your Daddy

That night I loaded the children in the car and we set off into the cold, dark night. We parked at my Dad's place since he lives near the huge, ugly building hosting the fair, and I fueled myself with a bowl of pasta then hit the noise, lights and crowds.

I was very concerned about losing Duncan, though even if he had managed to sneak off from sight, I'd have a good idea of where to find him. But it definitely was more stressful for me to be out at night among so many people with no other adult on hand. Lady and Thomas were instructed to keep together and stay near me as I knew Duncan would be liable to dash off to whatever caught his eye with no notice. I even took a photo of him just as we arrived in case I had to give his description to any security staff, paranoid or what?

SO for all my fears, we had a good time. Duncan was pleased to watch one of his favourite coasters, the Mad Mouse, and then his siblings rode the Caterpillar Coaster/Wiggly Worm or whatever it's called. He enjoyed watching them from the otherwise deserted back end of the ride, and racing the train as it went.



He chose to go on the animal train and since there were few young children around by then, he rode up front and rang the bell ecstatically all the time.

It made him so very happy, and that made us all happy. The fella working the ride looked like he'd had a sense of humour bypass though.

They went on a few more rides, Duncan again choosing one usually favoured by the under five age group, and Lady and Thomas enjoying something a bit more thrilling.


Today I worked for a while on planning an itinerary for Disney World in Florida. We're leaving next week and are psyched about it. I dare say the parks will have a bit more to offer than the particular brand of fun and thrills available last night in Belfast, even if they're are much less easy to access.

Make a splash

Image via stock.xchng

Tuesday is swim day. We go at lunch time when the learner pool isn't in use by school groups.

It's not so long since Thomas was nervous and clung to me in the pool, tolerating only short periods in the water. Now he wears goggles and swims over and under with true dedication and joy. I can usually manage to give him one helpful tip per week to improve his doggy paddling, bum in the air, legs splayed swimming style, but he tells me he doesn't need my help and he can do it himself. He's right, he is getting about well enough and is getting better and stronger each week.

Lady takes my advice slightly better and she swims now in a sleek, smooth manner, her long limbs pulling through the water. We raced a length last week, and she kept up with me, though I was looking backwards every second stroke to check on Duncan.

Duncan just loves it and grins the whole time we're there, even enjoying the showers after. He has me pull him as he holds a float. I try to do a life saving stroke as I drag him along but he's the wriggliest and bossiest rescue subject ever, and insists that I swim faster and go from left to right. I tell you, I certainly get a work out anyway.

One of Duncan's favourite things now is watching people go off the diving board in the adjacent diving pool, and the bigger the person, the better the splash. Last week, a very large man made him very happy by repeatedly plummeting off the board, creating gratifyingly gigantic turbulence in the pool. Duncan couldn't withhold a little shout of glee each time the big fella went off.

He emulates in his own small scale way, jumping from the poolside very carefully so as not to make a big splash or to go underwater. Sometimes he enacts a little pantomime of stretches and toe touching before he goes in, muttering the script from a relevant episode of Tommy Zoom.

At 1.20 a school group arrives and we retire to the baby pool for a few minutes to watch them. Duncan likes it when they all sit on the side splashing their legs back and forth creating lots of noise and white water. He joins in from where he sits. About thirty school children are crammed into a pool which we four usually have had to ourselves for the previous 45 minutes. Lady can't help feeling a bit sorry for them as they are restricted to a narrow strip about 10m across and must follow instructions to the letter.

Ah the delights and freedom of home education.
Smug...us? Just a bit.

Denis Leary- too funny!!!

Omigod did you hear about how funny Denis Leary is? I know he's been like, really boring and all for the past few years, playing serious drama roles and providing a voice for one of my own little moron's favourite kiddie films. So it's just marvellous to see him try to recapture his rebellious youth when he did brave and edgy shows like No cure for cancer in which he went on stage and drank beer, smoked and bawled out a litany of respectable targets in a most amusing and radical manner.

I suppose it's a mid life crisis thing, and he wants people to remember him at his Bill Hicks impersonating best, so he's written a book and it sounds like the most amazing, riotous, revolutionary tome. It's called "Why we suck" and again he gives 'em hell, lancing the inflated egos of those who put themselves in the spotlight, people like Hilary Clinton, Dr Phil and, er, those pesky disabled children.

This great comedic talent wrote:

There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumb-ass kids can't compete academically, so they throw money into the happy laps of shrinks . . . to get back diagnoses that help explain away the deficiencies of their junior morons. I don't give a fuck what these crackerjack whack jobs tell you - yer kid is NOT autistic. He's just stupid. Or lazy. Or both.

Diego the sabre tooth tiger from Ice Age with a self-portrait of Duncan.

Try not to die laughing just now.

When this short exert was publicised (by whom?) many people complained, among them parents with autistic children. Sadly many of the complaints tended to be like this: "How can you laugh at autism, it's devastating and a tragedy?! Just come live in my house for a day and see how it's nothing to joke at!!"

Bleuch. The problem isn't laughing at autism, it's just how pathetic and unfunny Leary has been.

Then Leary himself went and got all offended at people using their right to express their distaste at his words, by saying that the protesters hadn't even read the book and the quote was taken out of context:

...I not only support the current rational approaches to the diagnoses and treatment of real autism but have witnessed it firsthand while watching very dear old friends raise a functioning autistic child.

The point of the chapter is not that autism doesn't exist - it obviously does - and I have nothing but admiration and respect for parents dealing with the issue, including the ones I know.

The bulk of the chapter deals with grown men who are either self-diagnosing themselves with low-level offshoots of the disease or wishing they could as a way to explain their failed careers and troublesome progeny.

Of course, this entire misunderstanding can be easily avoided simply by doing one thing-reading the book.

Aw get over yourself Leary. I don't care if you acknowledge now that autism exists, even if you do qualify the statement with talk of "real" autism, as opposed to what; leprechaun autism? It's great to know you're onto the huge numbers of autism malingerers out there too. We parents of REAL autism kids are so relieved.

I wonder how the context of the nasty quote could make it any less offensive. Perhaps the preceding excerpt was, "Some people use autism as a platform to spout about all sorts of nonsense. They push their spectacularly idiotic ideas about "greening vaccines" or claim massive conspiracies exist to cover up the poisoning of children. Many claim they know what causes the condition, be it wifi, dog shampoo or milk. Others jump on the bandwagon to sell dubious and even dangerous therapies to deluded parents, or run schools that administer electric shocks to children for minor transgressions. Then there are those, who clearly haven't a decent thought in their shrivelled up brains, and who make low jibes about autistic children and their parents, saying horrible, hurtful, inaccurate and plain unfunny things like..."

I don't know how else it could be taken in context and not be all wrong.

Leary's book has lead to a few amusing moments though, not least when Jenny McCarthy rushed out to capitalise on a bit of self-publicity and with no insight into the destruction she was effecting on irony metres the world over, called Leary "obviously stupid."

It won't be a surprise to anyone to hear that I won't be reading his silly book.

"I exist" in Northern Ireland

The National Autistic Society launched their "I exist" campaign for recognition of the needs and views of adult autistic people at Stormont yesterday.

For my first time at the parliament building, the sky was startlingly blue as I made my way through the security posts to the revolving doors, location for some of the most cutting edge performance art the world has seen.


The launch was held in the prosaically named Long Gallery, and was so well attended that there was standing room only during the presentations. I was hovering around looking a bit lost, according to the two kind souls who offered me a seat beside them near the front. I ended up sitting two rows behind the four MLAs and right next to Mark Lever, the NAS chief executive with whom I had a brief chat.

First to speak were the politicians. I took notes as they spoke so can share my perceptions, though none of what follows is necessarily totally accurate. This is no Hansard report. I'll put my own thoughts in italics.

John McCallister (UUP) wishes for politicians from all the parties to work together on these issues. He acknowledges there is too little known about autism and that the state needs to work on the delivery of services to support adults. He called for the release of funds to support human dignity.

Iris Robinson (DUP) spoke as the Chair of the Health Committee. She said she's been interested in supporting people with autism for many years and visited the USA in 2007 as part of a cross party group with PAPA to find ways to meet their needs.
She said there's a need to get Statements earlier for children and mentioned that autism is diagnosed in the USA in a different way using a £1 million set of equipment called a MEG scanner.

(I looked up MEG scanners today since I'd never heard of them and they sound like a cool bit of kit, with SQID detectors and stuff that excites the usually dormant, medical-physicist parts of me.)

So back to Iris; she reckoned the high cost of a MEG scanner is justified by the high number of children with autism in NI. It would soon pay for itself as it could be used for people with epilepsy or who have had strokes or brain injuries as well as people with autism.
She finished by saying that we need to have a strong and inclusive voice and that education and social needs are especially important.

(I don't know how MEG scanners are being used to diagnose autism. They may play an important part in understanding he condition but I don't know if the limited funds available should be used to pay for one here when the need for basic support services in education, health, accommodation and employment is so great and underfunded. Also, is there really a centre of excellence in neuroscience where such a device could be put to best use, in NI?
Also, there was nothing in this speech about the needs of adults.)

Carmel Hanna (SDLP) spoke of the need to educate all of us to end confusion on autism issues, and said that we're all learning to listen to carers and parents about what it is like to live with autism. She said that the majority of adults with autism live at home with their parents which can cause stress and isolation for the parents, who can benefit from exchanging views with others in the same situation. She also told of the autism families who worry and dread the future and called for further training for health professionals. She said that the SDLP meets many parents and that they have a bigger lobby, and worried that older autistic people fall through the cracks in the services available and their physical and mental health can suffer, as can that of carers affected. She finished by calling for consolidation of services and said that her door is open to those needing support and help.
(The views, needs and worries of autistic people themselves were given much less prominence than the concerns of parents.)

Michelle O'Neil (Sinn Fein) was unable to attend due to a family funeral, and wanted to convey her support for the campaign.

Keiran McCarthy (Alliance Party) spoke last and said that he had little to add to what the previous speakers had expressed. But he added that autistic people need support, especially from the departments of health, education, employment and transport but from every other department as well so they can receive the same facilities as everyone else. He complained that various departments shy away from a joined-up approach meaning people lose out. He believes that early diagnosis of the condition would highlight the degree of spectrum (not sure he used the word spectrum here) to work out what provision is needed.
He wished we could do more to ensure all people enjoy a fulfilling and exciting life like you and me.
He finished by quoting from the report (showing he at least read some of it) that all are extremely valued and wanted people.
"I commit to ensure this."

Mark Lever showed a short campaign film then spoke briefly about the aims of the campaign. He told how "low level" (and presumably cheap) support services have made a huge difference in the lives of some people. He said that gaining services is often a battle when it should be a right. He believes that if we can make people aware of autism and its impact, then more people would be keen to act to improve things.

He was followed by Regina Cox who highlighted the findings of the NI report showing that many people haven't got a clue about autism. (This is no surprise.)

Regina then introduced Jenny McCleave, a young, autistic woman who read a few extracts from a short book she wrote for her family. (I have no notes for the next two speakers as I was so engaged by them that I forgot to write anything down.) Her contribution was incredibly moving. She spoke clearly and simply about her struggles to be heard and taken seriously. She wasn't diagnosed as autistic until she was (I think) 18 despite telling those around her for years that she knew she was autistic from the descriptions she read of the condition. She was always told, no Jenny, there's something wrong with you but it's not that. She was so frustrated and isolated that she considered suicide, and her diagnosis was a relief and vindication of what she'd known for years.

She spoke too about love and how people like her are capable of love even if they don't show it in normal ways. I, like the women sitting next to me, had tears in my eyes by the end of her short presentation. I felt so for the unnecessary suffering she's undergone, and wondered again how it is that people are so blasé in claiming that autistic people lack empathy when the truth is often the opposite.

Another autistic speaker called Rob Devlin spoke for a time. Again he described the difficulties he's faced as a child, the bullying and awful time he'd had a various special schools. His diagnosis didn't come until he was 14. He now lives at home and aged 29, is trying to get work as a voice-over artist. (He does have a wonderful voice.)

The event ended with a talk from Geraldine Banner, described on the programme as, mother of Noel, an adult with autism.

As she spoke, a huge photo of her son was displayed on the screen. I don't know if it was a particularly unflattering photo of the young man, but it felt a bit exploitative to me.

She started her talk with the words, "autism is a life sentence with no parole" (which jolted me, I thought it was a disrespectful choice of words) and said it affected the family and extended family. She said that her son is severely autistic and non-verbal. He was at a special school but the placement failed when he was about 13. She contacted the Camphill school near Belfast but they didn't ahve a place for him so they got him a place in a Camphill school in Scotland. He was there for about 8 months but that too failed, "due to his autism". She found out about another residential school in Scotland and visited it, was impressed and determnied to have him go there. She drove back to NI from Scotland with her very distressed son in the back seat, went to see a psychiatrist in Derry and though she said the doctor advised against it, had her son admitted to hospital (I presume she meant the psychiatric hospital) while she got her MP to secure funding for him to go to the residential school in Scotland. He had a difficult start and displayed self-injurious behaviour and aggression towards the staff and his peers. But he battled through adolescence and recently celebrated his 21st birthday with family and friends and it was a fantastic experience.

She wondered why there are no services available in Northern Ireland.

So ended the event.

I spoke for a few minutes to the chief executive, continuing the conversation we'd started before the presentation when I'd asked if he knew if any adult autistics would be there and I asked if they thought about showing videos by other self-advocates. He told me about various videos he'd seen and other pieces of art that represented the voice of people who wouldn't be comfortable enough to speak to a crowd or engage directly in events like this one. I asked him if he'd seen Mike Stanton's presentation at the NAS conference about the Autism Hub, he had and he commended Mike's work.

I didn't get a chance to speak with anyone else in any detail.

Before I left to pick the children up from their grandmother's, I joined a tour of the building led by the UUP MLA. We headed into the debating chamber where DUP MP Sammy Wilson was talking to a group of school children (who looked utterly bored). He talked about the role of the speaker and how debates work and asked if anyone had a question. I wanted to ask, Mr Wilson, as Minister for the Environment, have you any evidence for saying, "I am not convinced and I don’t think that there is any firm evidence to show that all of that climate change is due to CO2 emissions." Further, is there any chance you lot will be getting back to work any time soon?
But I held my tongue.

So that's what happened. I have lots of thoughts about it all, some good, some bad. I think the aims of the campaign are sound and support them fully, but I worry that the ends don't always justify the means and there's still a lot to do to get people, even those presenting at an autism conference, to think differently about autism.

Social Darwinism Drivel on the Austism Parent's Forum

I'm one of the moderators at the Autism Parent's Forum, but it's Bullet who does the work there and who keeps that place going so well with her excellent and courteous advice.

But whenever one of the members reports a controversial post, usually by someone trying to sell their dodgy "treatment" or being disrespectful to people like our children, I get to hear about it. I was recently alerted to the most pathetic and ridiculous post ever put up on the board here.

Now this is obviously a text book example of trolling; join up, write one incendiary post then leave forever. I have no interest in trying to reach the poster "The Reclaimer" and explain his errors or to help him understand just how insulting he has been. I'm assuming this is a male, I can't imagine a woman writing like this or signing off as "The Blademaster" and I shall address my remarks to Bladey.

But I'm still interested in looking at what he wrote, as an extreme example of how some people feel about autism. I think I'd also enjoy pulling this pile of drivel apart:

I’m terribly sorry to interrupt everything here but I cannot take this any longer.
I sit here day in and day out hearing things about autism so I thought I would add my own interjection for a change.

Thank you Bladey for your touching concern, opening your heartfelt remarks with an apology like that shows just how much you obviously care. We are so delighted to hear your "own interjection." Please do continue:

I’m getting rather tired of this whole "classification" thing that seems to have nestled itself into society. EVERY little thing is being categorised all over. All these disorders that people are coming up with just so they can slap a goddamn label onto something.
Back in the day, if a child misbehaves then said child is disciplined and learns to behave. Whereas today, if a child is naughty then there has to be some disorder involved where they can get "support" for themselves.
Well I for one think this whole charade is completely and utterly FOOLISH.

Oh wow Bladey, that must be it, you've hit upon a truth the rest of us have been unable to grasp. Our children don't need to be classified or labelled, they need some proper slaps now and then instead, or some better way to force them to behave!

Has anybody for one second stopped and thought about this as an outsider? Not as a parent etc of the "affected" child, but as a person who has to sit here everyday and listen to and try to sympathise with this bullshit?

Oh yes Bladey, it must be so hard on you choosing to come on to our forum for the parents of autistic children and listen to us talk about autistic children everyday. We must have colonised the internet with this stuff such that you just can't not come here.

I have a few things here that I would like to get off my chest:
1. For me, as a person studying science and parts of human psychology, I find it hard to believe in something that cannot be fully proved. For example, I have read articles stating that "your child may be autistic if it has one or more of the following traits". I’m sorry but "one or more" doesn’t really cut it for me. Mainly because of the fact that ALL people are different in their own ways and having such a list that itself is too broad is both foolish and condescending! Lots of people in the world will end up falling, even in the slightest, under one of these categories. I myself just prefer theories with a LOT more evidence to back it up.

HA!!! Once again Bladey, it should be obvious, science as you say, is all about proving things fully. There's no room for any level of uncertainty, ever. And this way of bunging a label of autism on people for just one or two things, it silly isn't it. That crusty old DSM IV manual gets it all wrong with their insistence on at least 4 different criteria from 3 different categories being met to get the diagnosis. What do they know? They should get you, Bladey to write the next edition. After all, your study of "science and parts of human psychology" makes you qualified to bestow your wisdom upon we mere parents, you should share it more widely.

2. I’m getting really tired of listening about how autistic people (mainly children) should get special treatment and stuff. It’s HIGHLY irritating. One of the main flaws i have thought about here would be the lack of Treatment this treatment causes. if you think about this logically, children are highly influential. if you bring a child up to accept this preferential treatment and not to be as accepting the full responsibilities of their actions then this mindset is going to stick with them when they grow up, Hereby cutting out CURING this disorder.

Once I figured out what all those words were supposed to mean, I could see that it is oh too true, it's HIGHLY upsetting to see these uppity children get speech therapy and blue badges and special passes at Disneyland. This makes them expect such wonderful things as their right when they haven't done anything to earn them. How greedy! Don't they know we live it a total meritocracy? It's a level playing field for everyone and don't let anyone tell you otherwise. Age, race, class, sex, never count against anyone. That's obvious when you look at the evidence in measures of attainment or of underachievement, like earnings and life expectancy, isn't it...?

I know I’m probably either going to get deleted form this site fairly straight away for this post, but I thought it would be nice for m to just get that off my chest.
And before anybody tries to say "you don’t know what its like to live with someone like this" because believe me I do.
I’m speaking here from a point of view that at first thought that autism was a very weak excuse for bad children, and then, soon after as a person speaking from the point of view who has several siblings that have been diagnosed with one type or another of "autism".

You're just the brave maverick laddie, entering the hornets nest of our forum with all our silliness about working with our children, accepting their varied neurologies, loving them and parenting them to do their best.
And how enlightened of you to remind us of that notion of bad children masquerading as disabled. Never miss a chance to out them for what they really are, eh?!
Your "autistic" siblings must be so proud of you and your efforts to understand them.

Also I’d just like to add that support for autistics is DESTROYING society. the planets going rapidly downhill because of mankind’s newfound compassion to help those who cant help themselves.

Hell yeah! Now we get to the heart of it. Autistic people are destroying the planet! They are causing wars without due cause, they bring earthquakes, famine and hurricane upon us. They are behind the collapse of the banks and the volatility on the stock exchange. Compassion for people like that makes everything go wrong.

What more words of wisdom have you got for us Bladey?

There is a nice little thing that I know of as Natural Selection or, survival of the fittest. The people who are striving to help the weaker of the species are ultimately dooming us all to a weaker gene pool and an even weaker future.
Good day
Regards
The Blademaster

Please forward all hate mail to Sh1zer@hotmail.com as i shall enjoy reading it.

Ah, natural selection and the problem of weak gene pools. Are you a fan of HG Wells and his non-fiction output? Those early 20th century eugenicists thought like you, but then Hitler went and lost the war.

Have a look at what this crazy man has to say about these matters:

...there are two reasons why we need to take Darwinian natural selection seriously. Firstly, it is the most important element in the explanation for our own existence and that of all life. Secondly, natural selection is a good object lesson in how NOT to organize a society. As I have often said before, as a scientist I am a passionate Darwinian. But as a citizen and a human being, I want to construct a society which is about as un-Darwinian as we can make it. I approve of looking after the poor (very un-Darwinian). I approve of universal medical care (very un-Darwinian). It is one of the classic philosophical fallacies to derive an 'ought' from an 'is'.

In case you're interested to know who this man is, who doesn't know what you Bladey have expressed so eloquently about the dangers of letting lesser people pollute the gene pool, the above quote is from a piece by Richard Dawkins. He has also written about how some people mix up Darwin's work on evolution as an explanation for life with eugenics as a blue-print for society in his book, A Devil's Chaplain. (Here's a preview.) I mean, what would Dawkins know about evolution?




Actually, "The Blademaster" just in case you missed it, I was being as sarcastic as possible for all of the above. I think your ideas are worthless, and you are clearly a fool to spout such effluent. So catch yourself on, buzz off and do a bit of growing up before you come bothering us again.

Image from a here, a fantastic resource for teachers and learners about evolution.
Bladey might do well to peruse the site.

My Lovable, Kick Ass Blog

At least Nick thinks so, as he's passed on both of these award/link building things to me, and for which I am most grateful.

I've only been reading his blog for a month or so, but it's a fine thing, with stories and photos of his adorable son Jacob, as well as observations on life and what makes it worth living. He even knows that Raising Arizona is the best Coen brothers' film, most people get that one wrong.

So now I have to name some kick-ass, lovable blogs (I'm combining the categories):

First, I pick Michelle Dawson, who blogs at The Autism Crisis, and keeps her minions in the loop at the TMoB board (the longest comment thread ever). Michelle is an autism researcher who works hard to address the glaring lack of evidence for most of the assumptions commonly spoken of as truths, about autistic learning and abilities. She just hit the headlines in Canada for her terrific win at a Human Rights Tribunal against her former employers, Canada Post, who discriminated against her in shocking ways when they discovered she is autistic. She represented herself throughout the arduous legal proceedings, and her win helps all Canadian autistic people, as well as everyone working for fair workplaces. She took this action solely because it was the right thing to do and didn't claim any compensation.

Next up is Kev Leitch who blogs with a team at Left Brain/Right Brain and who has recently been part of the Science Blogs book club discussion of the fantastic book by Paul Offit (I'm half way through it) Autism's False Prophets. Kev's been leading the fight back against the rise of dangerous quackery in autism discussions for years now, as well as promoting the importance of real rights, acceptance and ways to make things better.

Another blog I've come to more recently and love, is Grannymar, by, um, Grannymar. I had the pleasure of meeting the woman herself in Belfast last month, and even though she's an Irish blog celebrity, she was warm and welcoming. I was about to look through her blog for an example of what there is to love about her. It wasn't a hard task, the very first post is a touching account of her marriage with some great advice to everyone in a relationship. I dare say the woman will kick an arse in need of it too!

Another fine Irish woman blogger is Maman Poulet, whose ass-kicking of charlatans and crooks and exposure of their lies, is a joy to behold. She recently had a scoop about Sarah Palin's foreign travel claims, hee hee!

The last person I'm going to single out, is Kathleen Seidel, the blogging librarian who is so terrifying to grubby money grabbing, vaccine-claim lawyer Clifford Shoemaker, that he served her with an unjust, invasive and extensive subpoena in a craven attempt to intimidate her and stop her exposure of what he has been engaged in. He claimed that she, as the “mere mother of an autistic child and housewife,” was too well informed. He lost, the subpoena was quashed, and the judge set sanctions on Shoemaker, telling the fool man, "clearly he is unfamiliar with the extent of the information which a highly-competent librarian like Ms. Seidel can, and did, accumulate."
Kathleen continues to kick the asses of dangerous quacks.

So there you are. I hope they are all pleased with the accolade.

Irish Autism Action Campaign

I've just had a request from someone I have recently (cyber) met and come to like and respect, to promote a fund raising campaign for Irish Autism Action (IAA) and backed by mobile phone company, O2.

I hate to be so negative, but I have many differences of opinion to the IAA and this campaign. When I last looked at the IAA website, there wasn't much content and it focused strongly on ABA, though I had another look today and have more appreciation for the work they are involved in.

As for the O2 campaign; I really dislike the poster. I have long been irritated by the "puzzle" image of autism. I don't think autism is all that more puzzling than other varieties of the human condition, disabilities and not, nor do I think autistic people have to be "put together" (as can be implied by a puzzle piece). I particularly dislike the picture of the young boy with his mouth missing. I don't like the message, "let us be the voice for children who don't have one." I'd be far more keen on something about enabling children's voices to be heard, or something based on the Scope "no voice no choice" campaign.

As far as I can find with my Google skills (not as good as Jenny's no doubt) this is the main charity representing autism issues in Ireland. To analyse this group and their particular ideology, I read their "message to the Irish government" which had 8 requests:

1. Commit to Autism Specific Provision in health, education and family affairs
2. Fund Ireland's first Autism diagnostic centre, known as Solas
3. Provide each child with the educational intervention appropriate to their needs
4. Fund ABA schools
5. Make Autism-specific provision in secondary schools a priority
6. Fund ten hours of home-based support per child per week
7. Fund Ireland's first supported living project for adults with autism
8. Provide automatic welfare entitlements based on diagnosis

I commend their efforts for all of these aims except points 4 and 6.

Looking further into the IAA site, their "What is Autism" page starts with a Donna Williams quote,
"Autism is not me. Autism is just an information processing problem that controls who I am"

After giving a standard definition of autism, they write of:

"the increasing scientific research which has investigated chronic bowel problems in some children with autism and many believe that this continuing research will eventually provide some of the answers to this previously unexplained condition and the current rise in incidence."

and later:

"Although it is widely maintained that the increase in incidence can, in part, be attributed to better diagnostic procedures, it is apparent that the condition itself is reaching epidemic proportions worldwide."

There is no evidence of an increase in incidence, nor of an epidemic. It is possible to focus on the increased needs of children with autism, without twisting the truth to make a case.

Among the many ways the IAA is helping autistic children, is their recently opened diagnostic centre. I saw also that they make lots of helpful information available for the parents of children awaiting or post diagnosis, about the provision of services in every county as well as advice on how to ensure your child gets the help they need and are entitled to.

Heading the "diagnosis and assessment page" is a more admirable quote from another autistic woman, Jasmine Lee O'Neill;
"It does not have to be about tragedy or pain or loss. Bearing an autistic child is not losing that child. It's gaining a very special new son or daughter"

Like the NAS, they provide links to the dubious biomedical therapies groups, but include the disclaimer that "the presence of a link in this list does not indicate that IAA supports or recommends the content of that website". There is also mention of their work in Supported Living Services, something I'm particularly pleased to see.

However the IAA I think are best know for their lobbying for increased provision of ABA as the educational setting of choice for autistic children. Earlier this year, they produced a really unpleasant radio advertisement which was banned by the regulator. The parents of autistic children behind the IAA set up 13 ABA schools now funded by the government as part of a pilot scheme.

These centres of education, which have on average been in existence for 5 years or more, deliver intensive one-to-one (where necessary) scientific intervention to the children. The majority of the tutors in these centres of education have Primary Degrees in Psychology with many also holding Masters Degrees and Doctorates in Psychology. These centres of education deliver both a longer school day and a longer school year to ensure retention of the skills acquired by the children and to prevent regression during the long school holidays.

Places at these schools are highly sought and have been credited in media reports of near miraculous changes in the children attending them. I contend, that any school with intensive one-to-one teaching, and with many more hours taught each year, and an individualised education delivered to suit the learning style and sensory preferences of the child, will have good results, whether ABA is used or not.

Early this year, autism was much discussed in the Irish media, particularly the ABA lobbyist's attempts to have their preferred method of therapy fully supported by the government. I wrote here, here, here and here about the hugely overinflated claims for the effectiveness of ABA and railed against the denigration of autistic people, especially children, in these articles and discussions, some of which included interviews with IAA's celebrity spokesperson, Keith Duffy.

Just as I said then, I support anyone campaigning for better educational provision, better training of special education teachers, more resources for classrooms and smaller class sizes, more speech and occupational therapists, more leisure and sports facilities, measures that would help everyone. I support campaigns to reduce the wait time for diagnosis and the provision of support. I'd like to see more action on the needs of adult autistic people. I feel that the emphasis on ABA and the tactic of occasionally misrepresenting autism, will delay these aims.

PETA crap ad pulled

Yesterday I posted about a shameless campaign by animal rights extremists PETA, that combined anti-science and autism hate in a ugly stew.

Adapted, (and far better) PETA poster by Bev.

The advertising company have taken the offensive and outrageous billboards down, but PETA are still insisting that they're in the right. Ari Ne'eman, President of the Autistic Self Advocacy Network shared the good news:

I am happy to announce that PETA's recent, "Got Autism?" billboard has been removed by the advertising company hosting it. The billboard misinformed the public about the autism spectrum by falsely implying that milk consumption was the cause of autism. Such advertising contributes to a state of public hysteria about the autism spectrum, fueling the fear and resulting prejudice that marginalizes us from society at large. It is unacceptable for autistic people, our families and supporters to be used as instruments in PETA's political agenda or that of any other unscrupulous interest group. Our community came together to communicate the need for a swift withdrawal of this ill-informed piece of advertising, and I'm pleased to say that were able to achieve a swift result. That we were able to accomplish this so quickly and effectively speaks well for the autistic community and the cross-disability rights movement. Thank you all for your support.

Thanks to everyone who read and shared this information and especially to those who signed the petition. Thanks to Ben Goldacre, David Colquhoun, Bock and the rest of you who mentioned all this, guaranteeing that far more people got to hear about it. It's really heartening to see such wide support for human respect and integrity. But most of all, thanks to Ari and the disability advocates who once again led the way, organised and worded the petition so perfectly, and showed what we can achieve when we work together.

Hey PETA, Got Morals?

...or scruples, or integrity, or honesty or consideration for the ethical treatment of a much maligned and mistreated group of people?
No, obviously not.

PETA have proven once again what a crowd of pathetic people haters they are with their latest campaign, this time jumping on the bash-the-autistic-people bandwagon.

So much anti-scientific and unethical nonsense abounds in discussions about autism. One such example is the promotion of a supposed link between the proteins casein and gluten and autism. I wrote about this theory here, giving links to some of the published data on the subject, showing just one review claiming that a diet avoiding both these proteins was linked to parental reporting of a decrease in their children's "autistic traits," a nebulous set of criteria to measure, I think.

Anyway, the suckers at PETA have heard about these theories and decided to spin the autism hate and fear to suit themselves. They haven't even got their own ridiculous story straight, as the studies they mention are discussing a possible correlation between autism and casein (in milk) combined with gluten. Do they want all children to go vegan and stop eating gluten too? Well, those extremists probably do expect that. They say:

"Autism is a brain disorder that causes sufferers to have extreme difficulty communicating and relating to others. It is often marked by anti-social behavior like screaming and obsessive repetition of actions, which takes an enormous emotional toll on sufferers and their families. PETA has created a billboard to alert the public to the connection between this devastating disease and dairy-product consumption."

See how they have adopted the language of the previous soldiers against autism (ABA=cure adherents, anti-vaxxers, biomedical quackery child abusers). See the soggy cereal making a big sad face, 'cos autism is so awful and dreadful.

I am angry about this. I am angry with all the lies and abuses, with these groups pushing their agenda by offending autistic people. I am angry that little autistic children are held down in the offices of unscrupulous medical practitioners while chelation agents are injected into them, I am angry that some children have to touch blue 5 times to get a sweetie in place of getting a decent education, I am angry many are forced to swallow bucket-loads of supplements and sit in HBOT tents, that others must spend hours listening to AIT tapes or drink the magic water of homoeopathy instead of seeing proper doctors and having their medical issues sorted out properly. I am angry that these children are the guinea pigs for any quack out to make a buck or any dodgy researcher looking for a hook for funding of whatever crazy notion they can come up with. I'm angry that real needs like accommodation, inclusion and acceptance of autistic people are set aside while we have to battle these other evils. There's more, but I have to stop writing this at some stage.

As for diet and health links, this is not difficult. If you or your child appear to be among the many people allergic or intolerant to various foodstuffs, it makes sense to have your concerns checked out by seeing your doctor or dietitian and if necessary, altering your diet to improve your health and quality of life.

Please sign this petition and read the following letter from The Autistic Self Advocacy Network:

Hello all,

Recently, the organization People for the Ethical Treatment of Animals (PETA) launched a new ad campaign entitled, "Got Autism?", misleadingly implying that the consumption of milk is associated with the cause of the autism spectrum. PETA is misinforming the public about autism and thus joining a long line of unscrupulous groups that have sought to try and spread fear about autism as a means of pushing their particular agendas.

Attempts such as these treat individuals with disabilities as pawns in the efforts of other constituencies. By refusing to acknowledge the right of the autistic community to be referred to with respect instead of as the focus of public hysteria, PETA contributes to a state of affairs which marginalizes the disability community. People with disabilities, our families and our supporters deserve better than the exploitation and fear-mongering that comes about when disability is used as a means of scaring the general populace. For millions across the globe, the answer to PETA's "Got Autism?" question is an unequivocal yes. That should not spell the end of our lives or prevent us from being fully included throughout society. By exploiting us, PETA becomes a culprit in the social forces that marginalize people with disabilities and lead to the discrimination and prejudice that truly disable us.

Let PETA know how you feel about its choice to exploit autistic people by writing to them at info@peta.org or call them at 757-622-7382 and dial 0. In addition, we encourage you to express your support for these ads' swift withdrawal by signing this online petition.

Regards,
Ari Ne'eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org
732.763.5530

Learning at home with autism

On a cold, dark February morning, I gathered my long-legged but skinny son in my arms and carried him to the end of our street to wait for a bus. He was six years old and lacked mobility problems. Yet on that morning, like all the other mornings when I brought him out early to meet his bus, he was overwhelmed by the sleep that still hadn't quite relinquished it's hold, the inclement weather and his tension about what lay ahead and needed my arms to hold and comfort him and my neck to hide his face in.

He spoke his longest sentence to date that day as he said quietly yet emphatically, "I not go to school today." So we turned and went back home. He has not been to school since.

When he was six months old, my maternity leave ended and I returned to the lab where I worked. While his older sister had thrived in the workplace creche, he was always distressed and it tore me up to leave him. So I ended up serving just the minimum time required to retain my maternity pay and have not returned to paid employment.

He was a demanding baby and I was often shattered. I didn't know then that this child whom I'd nicknamed my "wee marsupial" for his desire to be attached at all times to his favourite bit of my anatomy, would gain a diagnosis of autism two months after his second birthday and four months after the birth of his baby brother.

I have focused on raising these children and eschewed the heady delights of a glittering career, especially since my husband's job demands long hours and frequent trips away from home.

Years ago, while reading online about autism, I encountered families who opted to home-educate their autistic children. They described the difficulties their children had faced in schools; the inflexible education system, the lack of appropriate support, the bullying and the children's feelings of inadequacy and isolation. Many had battled with the education authorities to have their children's needs recognised or to have those needs addressed. I didn't want to spend too much time tussling with the authorities, I just wanted to raise my children.

Intrigued and inspired by their stories, I researched it further, meeting with home-educating families, reading books and articles and discussing it all with my husband and our daughter. She promptly decided that she wanted to be home-educated after having attended primary school for almost two years. And so it began. My youngest son has never been to school.

My autistic son had gone to a fantastic nursery and on to a special school. I knew that eventually he would join his siblings in learning without school but I worried about how I would cope with teaching all three of them, especially considering how demanding he could be.

Then he moved to a new school which he never enjoyed, and clearly expressed his desire to leave, I listened and complied. I removed his name from the school register and embarked on a path of home-educating all three children.

It has been wonderful and he has thrived and developed in ways which, in my ignorance, I'd have thought were impossible. I can be forgiven for having such low expectations; the overwhelming depiction of autism I was faced with at his diagnosis, was very negative and heavy on the devastation rhetoric which has evolved over time as part of the mythology of autism.

But for each of my children, home-based education has allowed them to learn in a highly individualised and personally optimised setting. They are motivated to learn via their particular interests, like Doctor Who and Harry Potter, pets and wild animals, Thomas the Tank trains and roller coasters.

My son is autistic. It's an integral part of him, like his gender or eye colour and affects how he learns, how he experiences the world and how he interacts with others. It is no less valid a way of being than a non-autistic life. He is wonderful, just as he is. I am helping him and his siblings, to develop and grow to adults with the ability to think, the desire to learn and the ambition to realise their potential. I want them to have empathy and respect for others, to have confidence and self-esteem. I want them to develop the skills to solve problems and the flexibility to deal with modern life as well as they are capable. They learn that discrimination on the grounds on disability is no more acceptable than discrimination due to race, gender, social status or sexuality. Although I have the same wishes for all three children, they will not end up doing or achieving the same things and they will have different levels of independence. That's fine too. All I can do, is raise them as best I can, in an atmosphere of love and acceptance of their differences, difficulties and strengths.

My house is never as tidy as I'd like; there are usually piles of books, CD Rom boxes, swimming bags, toy trains and track, marker pens, dressing-up clothes and modelling clay lying about. Perhaps since we're all at home more than other families, it's more difficult to keep the chaos in check.

It's rarely quiet. The youngest might be in the kitchen perfecting his dance moves to a Justin Timberlake song, his sister in her room with the headphones plugged into my laptop and following an online maths course, while their brother designs another action packed funfair on Roller Coaster Tycoon or drawing a beautiful picture on the computer.

I stay more or less sane with frequent cups of tea, the odd break to blog or to read my favourites as well as lots of hugs and chats with the three greatest (in my biased opinion) children in the world.