Thomas chooses life

I'm tucking Thomas in to bed and he says, "if it was a choice between you dying and me dying, I'd want to die because I love you more than I love myself."
(Really, I think it's his fear of living without me.)
I say that I hope neither of us has to die any time soon, but I'm a lot older and have had more time so given the choice, I'd want him to have a chance to grow up.

He says, "for Melanie and Ricky, I think it'd be hard."
I ask who they are. He says they're some of the children he's going to have. "When they're both about 11, it's be hard for me to, you know, choose one. It'd be hard for you too wouldn't it, if you had to choose between me and Lady and Duncan?"

I assure him that it would be impossibly difficult as I love them all.
Then we share the final hug of the night.


For more of the boy's insights, including why the USA is so special, see his newly launched blog which he's called, Mega World, "because the world is very big after all."

Lady's birthday

Lady with her Grandma and Pippi.

My girl is growing up!

A week has passed since Lady turned 11. I still don't understand how I can have so old a daughter! We celebrated with a party, friends, a clown boucy castle, copious quantities of junk food, party poppers and two home made cakes. Best of all, her BFF (best friend forever for those who don't speak Girl) and her sister came over from London for a few days with their mum. It's been 2 years since they last visited so we were very happy to have them over again. The girls had a few hours to reconnect, then the rest of the party people arrived. It turned out to be a grand day, fine weather, great company, lovely gifts (thanks all!) and a bunch of happy sweet children running about keeping themselves busy.

Some of us went for a walk to the beach that evening. The girls played on the beach taking a heck of a long time to leave when I was ready to go home. Eventually they appeared, muck to the eyeballs, having climbed about the rock pools and grass and fallen into what Lady dramatically called "a trench."

The following day, I drove Lady, her friends and their mum to Delamont Park, a favourite of ours. The children went on the miniature railway then did their thing in the adventure playground while we mums drank a warm, brown drink we'd been told was coffee. Then we walked about a bit, enjoyed the scenery, took photos by the lake then watched as the clouds lowered to eclipse the view and we went back to the car, damp and hungry.

Then off to Downpatrick where we had lunch in the St Patrick's Visitor centre. The girls ran about the garden for a while then browsed the shop but we didn't bother with the exhibits.

I'd never taken the ferry from Strangford to Portaferry so took a detour that way. Then, not altogether on purpose, I drove up the east side of the Ards Peninsula, where the nice views were sadly spoiled by a glut of flags in many of the villages. These places could be so much more welcoming to visitors like my friends, places we'd want to stop off in, if more of the residents could see themselves as outsiders might.

Our visitors had to go home the next morning. It had been just lovely to have them over. There have been secrets and gossip shared, promises made and some close and special friendships renewed.

Awesome Autism Blogs

The questionnaire on autism blogs I wrote about earlier (and if you can, offer to complete one yourself) made me think about something I take entirely for granted in my life, the many and varied autism blogs I read.

I was asked to rate how helpful I have found such blogs as a source of information and support in raising an autistic child. I had to answer truthfully that the blogs I read have made a tremendous difference to my life and my knowledge of autism and how to best raise my son. I have never thanked all of you who write these blogs. You write fantastically well, thoughtful and thought provokingly. You explain, challenge, advise, illustrate, unearth, advocate and amuse. I have had many of my thought processes utterly revolutionised by your words. The changes didn't stop with my attitude to autism and disability, I began to think and learn more about all sorts of societal privileges and assumptions on the value of life. By following your work on promoting good standards of science and the ways in which quackery has become embedded in autism discourse, both in causation theories and in the treatments offered, I have thought more about evidence, ethics, and the scientific process than I did in 6 years of formal scientific education at universities.

The first autism blog I remember reading was Left Brain/Right Brain. It was started by Kevin Leitch and was an amazing resource. It still is, and now it has evolved to a group blog with several excellent writers offering up regular posts on autism research, the rise in dangerous autism quackery, the legal tussles and advocating for rights and accommodations. I soon came across Amanda Baggs awesome writings on Ballastexistenz and the sparkling wit and elegant prose of the much missed Autism Diva. She might not be writing these days, but her blog is still a fantastic resource to dig into. Obviously I can't discuss fantastic autism blogging without mentioning the women who share an enviable ability to dissect mountains of data and writings and do a great job of keeping in check the people who claim to know what they're talking about when they really demonstrably don't, autism researcher Michelle Dawson and super librarian and "mere mother ... and housewife" Kathleen Seidel.

I could go on for pages but will limit this to just a few more of the people who have made the biggest difference to my own life. Bev who blogs at Asperger Square 8 is someone I have praised many times for her pictures that say so much so clearly and simply, and who has recently added a few wonderful videos to her site. Kristina Chew has been blogging for years about her son and regularly offers her educated and insightful assessment the latest autism story in the media. She now blogs at change.org with Dora Raymaker.

Orac from Respectful Insolence often blogs about autism quackery, in particular the vaccine causation nonsense and the dangerous quack treatments sold to vulnerable parents by charlatans only interested in the profit margin. I think however, Orac would much prefer it if he never had to write another autism post ever again.

My new favourite blog is The Gonzolog which combines all the things that make blogs great; intelligence, passion, humour and well argued opinions.

Finally, 3 men writing blogs I love to read; Ed at The Standard Review, Mike Stanton's Action for Autism and Steve's One Dad's Opinion. Heck, all the autism blogs listed on my sidebar are bloody brilliant and I can't eulogise all of them.

I wrote on the questionnaire that one of my aims for my blog and that of my blogging friends who have autism and/or parent autistic people, is to confront the ignorance and misinformation that is so prevalent abut autism. This is discriminatory and unfair on people like my son so I hope to show that having a child with autism does not mean the end of a happy family life, and that he can learn and grow without any bogus therapy. I am also intent on challenging the spread of quackery that abounds in autism.

I said that blogging is useful publishing platform that anyone with an internet connection can access, so it's a great way of reading the thoughts of ordinary people around the world, and of connecting with professionals. Once you figure out who talks sense and who is full of hot air and worse, then it's a great way to connect.

However, I forgot to mention the toxic posts of the people who promote the quackery whole heartedly, the damage they do to individual children whose parents follow their advice and inflict the unproven treatments on them as well as the negative and skewed portrayal of autism they promote.

Loads of books, and a punch to the head

Duncan and I took his brother and sister to summer scheme. He asked to look in the charity shop and being in no hurry, I parked the car and off we went. Well talk about hitting pay dirt. Someone must have cleared their book shelves and dropped the boxes off very recently. There were a good few children's book spilling out so I asked if I could dig through the lot and the man working there, a good guy as I've learned from previous visits, said to work away. So we plonked ourselves on the floor and shifted through the boxes. Duncan made a little pile of those he was interested in and I made a huge pile of my own. Then ecstasy, we found 3 Thomas the Tank Buzz books, Duncan's absolute favourites. I hauled the booty to the pay desk and told the man I'd probably need to nip over to the ATM as I didn't think the £10 note in my purse would cover it. He asked me for a fiver. No way, I said, take a tenner for all those. Nah, said he, give me £5 and tell all your friends to come over and look through our stuff. So off you go to to your local Action Cancer shop. They are the best.

Here's what I bought:

1. 2 Mister Men books
2. 3 Thomas the Tank Buzz books
3. 2 children's videos
4. Winnie the Pooh Ladybird book
5. Alexandre Dumas- The Three Musketeers
6. The Usborne Internet Linked Science Encyclopedia (beautiful colour hardback)
7. James Joyce - 3 novel hardback
8. Robert Graves- Greek Myths
9. Anthony Burgess- A Clockwork Orange
10. Teach Yourself Irish
11. Marcel Proust -Remembrance of Things Past
12. Anita Shreve- The Pilot's Wife
13. Ian Rankin - A Question of Blood (I love me some Rebus.)
14. Minette Walters- Fox Evil
15. Kazuo Ishiguro- The Unconsoled
16. The Oxford Library of English Poetry Vols II and III
17. Francosi Mauriac - The Knot of Vampires
18. Leo Tolstoy- Anna Karenina
19. Sylvia Plath- The Bell Jar
    

How fantastic is that? I don't think I've read any of these before.

Duncan was so grateful, telling the man "thank you very much" and on we went to the pet shop to buy a new run for the guinea pigs. We passed the indoor play centre and he asked to go in. Again, feeling very spontaneous, I consented. We were the first people there. For a while after it was just Duncan and a younger boy, then a large group of 6-10 year old boys arrived. I had to redirect Duncan from the area reserved for 1-3 year olds, as he liked the slide there best of all. He was a bit frightened of going up to the first level of the frame for children his age. But when the gang of children arrived he felt a bit braver and followed them up the ladder and had fun in that area. I stuck by him all the time, moving about to keep him in sight. When his play time was almost over, I witnessed him and another boy bump each other going up some steps. They each tried to pushed past the other a bit then I watched as the other boy raised his fist and punched Duncan hard on the forehead. I called out to him to quit, and asked Duncan to come to me. He was very upset. He fell into my arms, tears streaming. He shook and shouted and bit at my shoulders saying over and over he was sad, angry and a bad and horrible boy. I just held him and sympathised and agreed that he was angry and felt bad. We moved to the chairs and he had a drink of water and sat on my lap for a while crying. One of the staff checked he was OK, she'd seen the whole thing. One of the woman accompanying the group of boys, one of which was little master hit a lot, came over to say sorry too. A while later she brought the boy with her and he said sorry. Duncan just said sorry too. As we left the other staff member asked after Duncan. They had been very kind, oh yeah, they'd given me a free cup of tea earlier when I hadn't enough change to buy Duncan's bottle of water and my tea. In the end, Duncan had enjoyed himself prior to the incident and I think he will want to go back again some time.

And the guinea pigs love their new run, they're popping (and pooping) all around while Pippi looks on greedily/curiously.

The Autism Gut Question

One of the most prevalent unsubstantiated claims about autism (after the "lack of empathy" myth) is the idea that autistic children have more gut problems than non-autistic children. This notion was fed by the now debunked 1998 article by Andrew Wakefield who claimed to have discovered a new disorder he called autistic enterocolitis, a condition not recognised by scientists.

I have read countless times, parental tales of woe about their autistic children's constipation. yeasty poos, diarrhoea, and all sorts of bowel problems. No doubt, many of these are real, but reporting is rather self selecting. Most parents whose autistic children have no gut issues don't make as much noise. Moreover, constipation etc is common in all children.

In the past week, 2 scientific studies have been published that cast doubt on the validity of the autism gut connection. These are ably discussed on LB/RB.

The first study compared the stool patterns of autistic children and non-autistic children and concluded,

"During the first 42 months of life, ASD children had a stool pattern that was very similar to that of other children, apart from a slight increase in stool frequency at 30 and 42 months. There were no symptoms to support the hypothesis that ASD children had enterocolitis."

The second study examined the incidence of gastrointestinal problems in autistic children. It concluded,

"No significant associations were found between autism case status and overall incidence of gastrointestinal symptoms or any other gastrointestinal symptom category."

and

"As constipation and feeding issues/food selectivity often have a behavioral etiology, data suggest that a neurobehavioral rather than a primary organic gastrointestinal etiology may account for the higher incidence of these gastrointestinal symptoms in children with autism."

So, according to this, autistic children are only as likely as non-autistic children to have gut problems.

The doctor who led the second study, Dr Samar H. Ibrahim, a pediatric gastroenterologist at the Mayo Clinic, has also criticised the common wheat-free/dairy-free diets autistic children are placed on despite having had no appropriate diagnostic tests.

"There is actually no trial that has proven so far that a gluten-free and casein-free diet improves autism. The diets are not easy to follow and can sometimes cause nutritional deficiencies."

She also made an astonishing, welcome yet sadly uncommon call for standards and ethics in autism.

"Patients with autism should be investigated the same way as normal patients when they have GI symptoms. And doctors should do a thorough investigation before labeling them with any GI disorder because the overall incidence of any GI disorder did not differ from that of the overall population."

Dr. Patricia Manning-Courtney (medical director of a Center for Autism Spectrum Disorder in Cincinnati) said,

"For me, this study lends support to the recommendation I make to a lot of families that there is no evidence to support restricted diets. They're dangerous and risky. You have to think long and hard before you, as a parent, make that choice."

When Duncan was diagnosed, talk of the GF/CF diet was all the rage on the autism lists and websites I perused. Most of the UK sites referenced Paul Shattock, a pharmacist who over 17 years ago, claimed that opioid peptides were associated with autism. However he has never published his evidence for this idea. Other studies have disputed his findings, like this paper which shows no correlation between IAG and autism.

For some children, restrictive diets may help, but I agree with the doctors quoted above, get some real medical advice first.