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.

Scooting all the way

My Dad called around just after lunchtime. Lady and Thomas were at the leisure centre for summer scheme, so only myself and Duncan were at home. We decided to go for a walk after having a cup of tea, but there came an almighty shower of rain. Ach well, we thought, it's only rain. What do you expect in Ireland. I took a couple of raincoats for myself and Duncan, packed Pippi's poop pick up bags and off we went, 3 humans and a dog. Or rather, since Duncan was categorising his family members as either human or elf yesterday, one elf, two humans and a dog.

Where we were.

Despite the earlier rain, it was a beautiful, clear and sunny afternoon. Before long I was too hot to wear my raincoat so tied it and Duncan's about my waist. I should have taken a bag. I had intended to walk part of the way along the coast towards the next town and then turn home with Duncan while Dad carried on and got a train home. But Duncan was away ahead on his trusty (and rusty) scooter and had no intention of stopping. I had to jog a few times to reduce the gap between us and often was to heard roaring after him, "DUNCAN, STOP! WAIT!" no doubt to the delight of other walkers. I always announce our presence when we're out and about.

It's a fair way to the town, taking an hour of fast walking to get there. Once there I lost sight of the boy for a while as it became more crowded and there were many more options of places he could go to. I ran to catch up (phew) and it turned out he was still tootling along merrily on the coastal path right to the town centre. He had a target in sight- the shop that sells half price ERTL Thomas the Tank trains.

A well placed ice cream van impeded our progress for ten peaceful minutes. Then on to the shop which provided one pretty little Bluebell steam engine. They sell cuckoo clocks there too, except that instead of a bird, they each have a farm animal pop out. The staff recognise Duncan now and always set off the clocks for him to enjoy, which is kind.

Dad waited outside with Pippi, who as usual attracted lots of positive attention. While she barks lots at anyone arriving at out house for the first minutes they're here, she is always impeccably behaved when we go out. She sat and enjoyed the adulation and strokes.

Then on to the park to wait a while until summer scheme finished. We were diverted again for a while to watch a breaker machine tearing up the road in massive chunks. Then I took Duncan into the library to use their facilities, he left his scooter very neatly against the bike rack. Then he raced off again to "the green grove", a rose covered walkway. Dad and I sat on a bench and watched him race about. He went into the play park for a while. I hovered nearby as usual, the park was full of younger children and I needed to be sure he was careful enough. He got on the roundabout with a little girl and pushed it around slowly until she got off then he sped that mother round like it was going to drill into the earth's core. He went on a see saw with a boy whose mum said they were over for the week and live in San Francisco (where Gordon is right now, and loving it!). She remarked that playgrounds here are rather more dangerous hence more fun that in the USA.

By then we had to go to meet the others. Duncan was fading a bit, finally all that exercise was taking a toll. We reached the leisure centre and walked to the train station. I was told that I couldn't take Pippi on without a carrier. Nooo! I was knackered by then and didn't relish the idea of walking home. The inspector went to ask the train's guard if he'd allow a one-off exception and thanks be, he said yes, so long as Pips didn't go on the seats. No problem there, I just held her on my lap. I will buy some sort of light collapsible carrier for future use.

We said bye to Dad on the train as he carried on the his house. Home again at last, and time to get the dinner on.

Simon Singh's chiropractic article: “Beware the spinal trap”

Many bloggers today are reprinting a slightly altered version of the article on chiropractic Simon Singh wrote for The Guardian. Unlike scientists who defend their claims by discussion in the scientific media, the British Chiropractic Association (BCA) used the method so beloved of practitioners of non evidence based medicine, and sued Simon Singh for libel. There's nothing the alties like so much as a spot of legal chill.

Like all forms of woo, chiropractic is said to cure/treat autism. Quentin Wilson says it cured his autistic son and he used to be on the telly talking about cars so he should know. His anecdote is used by this UK chiropractic clinic as some sort of evidence of effectiveness.

Chiropractic is one type of woo that has before now, seemed to avoid close inspection from the DCs of the world who excel in exposing pseudoscience, as it seemed more scientific, or at least, sciencey. But the decision of the BCA to apply legal muscle to silence reasonable critique has only drawn lots of people to focus attention on their practices and positions. They are not enjoying the scrutiny.

Simon Singh wrote a decent, informative article and it'd do no harm for more people to read it.
If you agree that the law has no place in scientific disputes, please add your name to the statement.

-----------------------------------------------------

Beware the spinal trap

Some practitioners claim it is a cure-all, but the research suggests chiropractic therapy has mixed results - and can even be lethal, says Simon Singh.

You might be surprised to know that the founder of chiropractic therapy, Daniel David Palmer, wrote that '99% of all diseases are caused by displaced vertebrae'. In the 1860s, Palmer began to develop his theory that the spine was involved in almost every illness because the spinal cord connects the brain to the rest of the body. Therefore any misalignment could cause a problem in distant parts of the body.

In fact, Palmer's first chiropractic intervention supposedly cured a man who had been profoundly deaf for 17 years. His second treatment was equally strange, because he claimed that he treated a patient with heart trouble by correcting a displaced vertebra.

You might think that modern chiropractors restrict themselves to treating back problems, but in fact some still possess quite wacky ideas. The fundamentalists argue that they can cure anything, including helping treat children with colic, sleeping and feeding problems, frequent ear infections, asthma and prolonged crying - even though there is not a jot of evidence.

I can confidently label these assertions as utter nonsense because I have co-authored a book about alternative medicine with the world's first professor of complementary medicine, Edzard Ernst. He learned chiropractic techniques himself and used them as a doctor. This is when he began to see the need for some critical evaluation. Among other projects, he examined the evidence from 70 trials exploring the benefits of chiropractic therapy in conditions unrelated to the back. He found no evidence to suggest that chiropractors could treat any such conditions.

But what about chiropractic in the context of treating back problems? Manipulating the spine can cure some problems, but results are mixed. To be fair, conventional approaches, such as physiotherapy, also struggle to treat back problems with any consistency. Nevertheless, conventional therapy is still preferable because of the serious dangers associated with chiropractic.

In 2001, a systematic review of five studies revealed that roughly half of all chiropractic patients experience temporary adverse effects, such as pain, numbness, stiffness, dizziness and headaches. These are relatively minor effects, but the frequency is very high, and this has to be weighed against the limited benefit offered by chiropractors.

More worryingly, the hallmark technique of the chiropractor, known as high-velocity, low-amplitude thrust, carries much more significant risks. This involves pushing joints beyond their natural range of motion by applying a short, sharp force. Although this is a safe procedure for most patients, others can suffer dislocations and fractures.

Worse still, manipulation of the neck can damage the vertebral arteries, which supply blood to the brain. So-called vertebral dissection can ultimately cut off the blood supply, which in turn can lead to a stroke and even death. Because there is usually a delay between the vertebral dissection and the blockage of blood to the brain, the link between chiropractic and strokes went unnoticed for many years. Recently, however, it has been possible to identify cases where spinal manipulation has certainly been the cause of vertebral dissection.

Laurie Mathiason was a 20-year-old Canadian waitress who visited a chiropractor 21 times between 1997 and 1998 to relieve her low-back pain. On her penultimate visit she complained of stiffness in her neck. That evening she began dropping plates at the restaurant, so she returned to the chiropractor. As the chiropractor manipulated her neck, Mathiason began to cry, her eyes started to roll, she foamed at the mouth and her body began to convulse. She was rushed to hospital, slipped into a coma and died three days later. At the inquest, the coroner declared: 'Laurie died of a ruptured vertebral artery, which occurred in association with a chiropractic manipulation of the neck.'

This case is not unique. In Canada alone there have been several other women who have died after receiving chiropractic therapy, and Edzard Ernst has identified about 700 cases of serious complications among the medical literature. This should be a major concern for health officials, particularly as under-reporting will mean that the actual number of cases is much higher. If spinal manipulation were a drug with such serious adverse effects and so little demonstrable benefit, then it would almost certainly have been taken off the market.

Simon Singh is a science writer in London and the co-author, with Edzard Ernst, of Trick or Treatment? Alternative Medicine on Trial. This is an edited version of an article published in The Guardian for which Singh is being personally sued for libel by the British Chiropractic Association.

Notes from the week

The first week of summer scheme was a great success. Thomas informed me that it was excellent and that he didn't even know he'd make some new best friends. He's especially keen on a boy whom he likes because he's kind, funny and thinks Thomas is funny too. I thought those particularly good qualities to look for in a friend. Lady told me that Thomas is hanging out with a few other boys his age who run around saying, "uh oh, spaghetti-o!" which is Thomas' new catch phrase. There are worse things he could have taught them! His other new thing is to describe everything, deadpan style as, "fascinating." I don't know where he gets these things.

Lady has joined a group of pals all into sporty stuff. She loved the swimming, badminton and gymnastics best. I'm happy that they're both enjoying it.

Duncan and I had 3 quiet days together. We did a few tasks in town, chilled out at home, cooked chicken, printed out more pages for his Thomas the Tank books and went for lovely walks in the forest with Pippi dog. We also went to see the paediatrician and unlike the last time (hellish) it all went so well. The paediatrician wanted to review his progress since starting the medication. However he only took it for a month to no discernible effect. I thought about increasing the dose, after discussing that option on the phone with his doctor, but instead decided to stop giving it to him. By then the weather was better and we've been outside a lot more which helps him burn off his pent up energy and like all of us, he's happier when it's nicer outside.

He found a Thomas the Tank book in the waiting room so spent his time in the doctor's office avidly looking through it, reading out little lines now and then. I was so much more aware than ever before of talking about him in front of him, and trying to save his potential embarrassment. He was listening carefully even though he appeared not to and told me "that's enough" when I told some anecdote or other.

We went to the funfair for a while on Saturday while Lady had her cheer leading class. I took Thomas on the waltzer. Sweet mother, never before have I experienced a ride so fast. It went on for ages, kept slowing down giving me a false sense of relief that it was finally over, only to speed up again. It was like some sort of metaphor for life. Thomas was shaking when we alighted, but got his nerve up enough to sit by Gordon on the bumper cars while I accompanied Duncan. He "helped" me steer and we'd a great laugh. It was the only ride he wanted to go on, he just watched the rest.

On Sunday morning Duncan asked me to take him and Pippi for a walk. He specifically requested that the rest of the family not come! We walked for a couple of miles in the forest park and out near the shop. I had no money with me and he was content to just walk past and not go in. It was really nice. He took his scooter and was a little way in front of me. He pushed the scooter up one especially steep and bumpy hill saying as he went, "this is very hard work. Will I ever see the top!" Then nearing the road he took Pippi's lead and I carried the scooter. She kept digging in her heels and looking back to see where I was which limited his ability and desire to race off.

Later, Gordon's mum came over to babysit while he and I went shopping for clothes he needed. He's off to San Fransisco on Wednesday for a week long conference so he's got to look sharp. I'm well used to being the only adult about. But perhaps some time soon I'll get to switch the roles, at least occasionally.

I'm a Mummy and I'll vent if I want to

I am so sick of this. There are some people who choose publicise their feeling of rage, hate and shock at having given birth to autistic children. On Gonzo's blog I read about one woman's horrible bile-filled blog post about her daughter. This child is 8 years old. Her mum describes her as "recovered from autism" whatever that means. But this girl still causes her mum so much pain because she just isn't how she's supposed to be (link broken deliberately). The mother complains that her daughter isn't into dolls and make up, but prefers to goof about, play computer games or ride a scooter. I mean, how dare the child resist the gender role assigned to her. If she doesn't start with the make up by 8 she'll never know how to apply liquid liner properly.

But mum has more to say. She is jealous of the parents whose children have cancer! She wanted to punch her cousin in the face for sympathising about another cousin's child going through surgery, because her troubles were bigger; "my [recovered] daughter's MIND, HEALTH and LIFE’S POTENTIAL were stolen and I’ve had to figure out how to pay for them and get them back on my own! Don’t fucking talk to me about surgery! Where was my basket of cookies and flowers, Sorry about the Autism, Get Well Soon? Oh yeah, didn’t get one."

It's not good enough. It can't be right to get off on vitriolic hate speech about your own child like that.

Then this morning at Cat in a Dog's World I read that that Mummy venting had struck again. In a New York Times blog, a woman with a son with Asperger's felt free to tell the world how rotten her life is because of the way her son behaves. She blames all of this on his autism. Does she think this venting will make her life better? Does she think her portrayal of what is titled "the unvarnished reality of autism" will increase understanding of autism and autistic people or will it, as I suspect, make the public ever more fearful of those with an atypical cognitive phenotype? Some of what she describes is society's reaction to her son. I face the scowls when I'm out with Duncan too but that's not his problem but that of the mean ninnies who judge him and me.

She even says, "my son has been doing much better lately" but still tells her tale of woe as if it's all still happening.

I cannot say that her son is not as hard to live with as she says, but there are lots of children who are not autistic who are bloody hard work too. Choosing to become a parent means you have to expect the unexpected. Autism, or any disability, doesn't necessarily have to bring pain and suffering to parents. Different people react in different ways to difficult situations. While I am stressed and upset at times by things I must deal with, some of them related to my son's autism and some not, I don't see my life as a litany of horror. I get over it and keep going as best I can.

What she describes is NOT the unvarnished reality of autism, it's just how she chooses to characterise it.

I also disagree with the implication, by "it's time to stop mincing words" that until now, no one was telling about how horrid autism really is. That's nonsense. There are newspaper articles nearly every week by parents and siblings venting about how terrible the autism is and how it's ruined their lives. We have children's charities depicting autism as a monster. Massive USA autism organisation Autism Speaks released a staged film a few years ago which was all about how haaard life is for women with autistic offspring. Quack cures are featured on health pages, along with pictures of grim faced parents describing that they just had to try the calcium stripping chelation drugs/chemical castration drugs/homoeopathy/shaman therapy/exorcism/chiropractic manipulation because life was too awful before. Loads of books have been published giving insight into the "real and raw" suffering of these parents. How the hell can any of these people claim that they need to speak out and share their pain as if it's not been told of hundreds of times in very public places before?

And aside from how this affects the perception of autism in society, how do you think all this gross negativity affects the people being described? What will my son feel when he's old enough to understand the depth of hate that exists towards people like him? Oh this is something I fear.

Sarah expressed carefully and with compassion, her feelings on the New York Times blog post. Her letter was published. It's wonderful.
But I feel like giving up when I read the comments on what she had to say. Over and over again people are disparaging autistic people in the harshest terms, accusing them of lacking empathy because they express hurt when someone writes about how they destroy normal people's lives.

I still feel shock at the hate filled garbage thrown at Sarah for daring to write. She is damned as not autistic enough to comment, as mentally ill, as complaining over nothing. It's a box ticking exercise in seeing how privileged groups diminish the voices of marginalised people.

Edited to add, Bev has a typically marvelous post up on all this and Sarah has responded to the commenters. I have yet to read it, but I look forward to her annihilation of their ill formed arguments.

Do you know what it's like?

Lady and Thomas start summer scheme today. It lasts all day from 9 to 5. Thomas has never done anything like this before and was a little nervous but excited. I arrived a bit early to sign them in. There were quite a few families gathered, and since it was raining hard, everyone was milling around indoors instead of lining up outside. Duncan was, I think, overwhelmed by the crowd and started running around and shouted a bit. I scooped him up in my arms since I had to talk to a staff member. I asked if I could sign my children in quickly as their brother is autistic and finds the wait difficult. Duncan was kindly providing evidence of my statement. The staff member agreed and went to fetch a pen. When the staff sat to tick off names I sidled up to sort out Thomas and Lady. That done, I heard a woman behind me complain loudly that "some people are so rude" and something about "pushing children." I turned, with Duncan still in my arms and asked if she was talking about me. She said yes, and that I'd pushed past people. I explained that my child is autistic and I'd been given permission to sign my other children in quickly. She said, "well, but you pushed my daughter and didn't even say sorry." I really don't think I pushed anyone, but perhaps Duncan in my arms had brushed the child without my noticing. Anyway I apologised to the girl who was about Lady's age, and said I hadn't meant to push her. The mum moaned a bit more but I didn't hear what she said. I looked at her, exasperated and said, "Do you know what it's like?!" She said no, and I left to say bye to Thomas and Lady. They had been standing apart from me in silence the whole time. I am not sure if they were just letting me get on with sorting things out, or if they were a bit concerned by my or Duncan's stress, or if they were embarrassed at all. But they smiled and took their swim bags and packed lunches to the hall to join the fun.

Walking out to the car I though about the encounter and what I'd said. I know I needed to get that accommodation for Duncan and that others could see it as unfair. I suppose it's the same at theme parks etc. when I get a pass to allow him to go on attractions more quickly and some mutter about queue jumping. I was concerned that my response was less than optimal. My last statement could be read as rather "poor me" when what I meant was, do you know what it's like to have to deal with people like you, not, do you know what it's like to have such a tragic life!

Ach well. It's done with now. Duncan and I have plans. It's going to be quite nice for just the two of us to have time together.

Child swap

My brother and I swapped offspring for the weekend. I drove a car load of children west to his place on Friday, leaving for home a few hours later without Thomas, who was staying with his favourite male cousin C. and with an extra girl, my 12 year old niece A.

A. is big into animals. There's nothing she likes better than to go hoking in the great outdoors for critters. Unsurprisingly Pippi was a big hit with her. The girls chatted until late, then awoke very early next morning. By 6am they were outside on the trampoline. I didn't mind, they're both big enough to get their own breakfast and I let them know I'd be getting a couple more hours of sleep myself.

They went for walks, and took the train into town unaccompanied. They visited the funfair and Lady returned with an outfit she's bought with the money I'd given them. She was starving though having chosen clothes over lunch. They walked to the beach and chatted and chatted.

Next morning I took them to see Harry Potter and the Half Blood Prince. We'd already seen it on the day of release but went again as A. was keen to see it too. I enjoyed it more 2nd time around as I wasn't so caught up in seeing how they'd translate the book, and enjoying it more on it's own merits as a film. The girls laughed a lot and A. was sobbing her little heart out at the end. Bless! Lady doesn't cry at films, she can't get too moved by what's not real. She doesn't take after her mum in that; I get all choked up for the silliest thing. Lady explained to me once that she doesn't get upset by scary scenes either as she just imagines all the film crew just outside the action. So much logic...

We dined at Ikea then they were off again, to the swimming pool. Their grandparents came over for a visit in the afternoon and we had a lovely few hours together. Duncan didn't want them to go home, "don't leave me!" he pleaded with his hands plaintively at his face. It was clearly something he'd seen on film!

Today my brother and his family all arrived here with Thomas. We had lunch and baby E. bum shuffled all over. She too was delighted with Pippi. She had a good ould poke and stroke at the dog, who was, after she got her traditional loud barking greeting out of the way, remarkably well behaved and tolerant. All the same, I watched her closely.

Thomas is just having a nice bath. He doesn't like to bathe in other people's houses. He had been a big hit with everyone, though they think he's really funny with his serious nature and forthright views. He ate everything he was given but announced that he preferred the food at home (in fact, he said he likes his Dad's cooking best. Humph.) On being asked in the shop if he wanted donuts, he said, "oh yes. They're my favourite type of junk food." It was an untypical response.
But he's so very like his dad, a little professor type. And I know how that can read. Perhaps he does have a few BAPs. I think we all do in this family. We're a happy, bappy lot.

Short Questionnaire for Autism Parents

I've already mentioned this and once again call on anyone with an autistic child, formally diagnosed or not, to answer some questions for a Masters student. I've copied the questions out below so you can see how quickly it can be completed. It's available to fill in here. Email Paula at pjohnston24@qub.ac.uk if you can help.

--------------------------------------------------------------------------------------------
The following questionnaire is designed to assist a Masters degree student in Autistic Spectrum Disorders, in their study to determine how internet blogging sites assist parents of children diagnosed with an Autistic Spectrum Disorder in understanding the disorder and finding ways to cope with the pressures associated with everyday life.

By signing below you are consenting to the information you provide being used in this study. Complete confidentiality will be upheld at all times and the database were your information will be held will be password protected and destroyed after its use.

Questionnaire

1. Name: Sex: Male Female
2. D.O.B:
3. Country of Origin:
4. Occupation:
5. Marital Status:
6. No. of children:
7. No. of children with a diagnosis of Autism Spectrum Disorder:

8. How long have you been using internet blogging sites?
Less than a year
4-5 years
1-2 years
5-6 years
2-3 years
6+ years

9. What initially made you want to access internet blogging sites? Put an x in one or more box.
Information
To meet friends
Advice
To share with others your experience
To meet other parents
To find out about local autism events
Escapism
Other, please specify:

11. How frequently do you use internet blogging sites?
Everyday Once every 2-4 weeks
4-5 times a week Once every 1-3 months
2-3 times a week Once every 3-6 months

12. How many internet blogging sites about ASD do you use?
1
2-3
3-5

13. When did you begin to use internet blogging sites about ASD?
Before your child’s diagnosis
During the diagnosis process
After your child’s diagnosis

14. How far have internet blogging sites improved your knowledge about ASD?
Significantly improved
Slightly improved
Not really improved
Not improved at all

15. How far have internet blogging sites helped you personally with your child/ children with a diagnosis of ASD?
Significantly helped
Slightly helped
Not really helped
Not helped at all

16. How far have internet blogging sites provided you with any emotional support you may have needed? This would include writing to other bloggers.
Significantly helped
Slightly helped
Not really helped
Not helped at all

17. How far have internet blogging sites provided you with any practical support you may have needed? This would include information / advice other bloggers may have written about ways they have worked with their child/children.
Significantly helped
Slightly helped
Not really helped
Not helped at all

18. Have internet blogging sites you have used provided you with any particular advice about outside established agencies which provide support to children with ASD and their parents?
Yes If you answered yes move to question 19.
No If you answered no move onto question 20.

19. Did you find the information provided useful?
Yes
No

20. Why do you feel you now access internet blogging sites about Autistic Spectrum Disorders?
Information
To meet friends
Advice
To share with others your experience
To meet other parents
To find out about local autism events
Escapism
Other, please specify:

21. Do you think you will ever cease from accessing internet blogging sites?
Yes If your answer is yes move onto question 22.
No If you answer is no, skip to the end.

22. Why might you stop using internet blogging sites about autism?

If you have any other comments or opinions to make about your use of internet blogging sites about ASD then you are most welcome to add them in here:

The questionnaire is now complete. Thank you so much for your time and effort in helping to assist my study.

Autism Blogs: Can you help a Master's Student?

I was contacted recently with this request:

I am a student from Queen's University Belfast and I am currently studying a masters in Autistic Spectrum Disorders. At present I am doing my Dissertation which is based on how internet blogging sites assist parents of children on the autism spectrum and so your website is of great interest to me. I realise you are a very busy person but would greatly appreciate it if you would be able to complete a short questionnaire or be able to help me pass my information onto the bloggers of your website. I plan to contact 60 participants in order to fully answer my question. This is all completed with confidentiality and your information will be deleted after it has been used, no names will be used in the writing up of the dissertation and my topic has been approved by Queen's University, Belfast ethics committee.

I agreed to take part and was forwarded the questionnaire. Since this takes the form of just a few multiple choice questions with the option to expand on answers if you choose, it takes just minutes to complete. The questions are about why people read blogs and what they gain from them.

If anyone reading has an autistic child* and would be wiling to take part, please email me (thefamilyvoyage at yahoo dot ie) or leave a comment here and I will pass your details on to the researcher.

*I don't think the child has to have a formal diagnosis but the researcher could clarify that. After all, blogs are often helpful while parents are negotiating the diagnostic process.

One quack clinic goes, another springs up

I just discovered a new site, Homoeopathy Ireland. It's for a clinic in Wexford claim to specialise in the "leading childhood epidemics of our time: Autism, ADD/ADHD, Asthma and other allergies."

Clearly these are all conditions in which homeopathy has been shown to have no effect whatsoever. But then this form of "medicine" has been shown to help many who have "a vague sense of unease or a touch of the nerves or even just more money than sense" then the homeopaths will be "there for them with a bottle of basically just water on one hand and a huge invoice in the other."

It's rather spooky that I learn of the existence of this clinic claiming to be able to heal the body of autistic children and hence their minds (gak) on the same day I read of the closure of a USA clinic promising much the same kind of quack nonsense and similarly intent on fleecing the well meaning parents of disabled and sick children. The quacks just love to get a bit of that autism pie. Brüno knows that autism is "in" now, but not because its funny, but because it's a great money spinner for people with all sorts of agendas.

The good folk at Homeopathy Ireland have a post up detailing their philosophy of autism. I've left a comment which has to be approved and which I'll repeat here.

Autism rates are not increasing. Changing diagnostic criteria, broadening of the autism concept, diagnostic substitution, improved services and awareness have all contributed to a perceived increase.

There is no evidence that autistic children have been successfully treated biomedically, and absolutely zero evidence of homeopathy having any kind of benefit in autism or any other non self limiting condition.

“Here, at Homeopathy Ireland we believe that vaccination injury among other variables play a part in autism.”
Your scaremongering about vaccines is not backed by any evidence either, some parents may have a “belief” that vaccines damaged their children but that is not enough. Do you at homeopathy Ireland welcome increased numbers of children suffering the ill effects of preventable infectious diseases also?

Where are these “Studies [that] have shown that 80% of these children have symptoms that suggest gastrointestinal disease”?

Autism is not curable, certainly not with homeopathy/magic water. Autistic children can learn, develop and benefit from sensitive parenting and appropriate education.

“By healing the whole body; the source of the problem, we then heal the mind.”
Prove it.

I have looked further at the effects of homeopathy on autism here.

Feeding all the senses

Duncan just laid out the flour, cocoa powder, sugar, eggs and butter out on the kitchen work top. He then set out a bowl, measuring scales and a wooden spoon and requested that I help him prepare a chocolate cake. We have been making a small, reduced sugar confection that can be cooked quickly in the microwave and which he loves. I don't, but then, that's an advantage as I'm not so tempted to munch it down myself. Duncan's recent desire to eat chocolate cake stems from a clip of the film Matilda that he watches regularly.



Duncan likes to eat his cake like the talented Bruce Bogtrotter, enjoys seeing chocolate sauce smeared over his face in the bathroom mirror and has even be known to hold his empty plate over his head when he's finished. He has also gained some useful new expressions thanks to Miss Trunchbull; disgusting criminal, scrumptious and sweat and blood being among his latest acquisitions.

Last night I cooked some chicken. Duncan ate 3 pieces while watching a 2008 BBC Olympics promotion film Lady showed him recently.



This is why. He wanted to see the chicken-eating pig while he himself ate his chicken. This happens often. Many of the food he eats in his (thankfully) forever expanding diet are items he was inspired to try after seeing them on a film. He eats corn on the cob, having seen it on Home on the Range. He eats spaghetti, thanks to Lady and the Tramp. Oxtail soup is a favourite because of Ratatouille, porridge came from various editions of Goldilocks and the 3 bears. He often sets the appropriate clip going as he eats the particular food it inspired.

I must see if he'd enjoy Popeye. he could do with more greens.

(Anne C has written a few good posts recently about food and eating, starting with On The Feeding of Quirky Mammals, Part 1.
Gonzo has started a new food blog. Perhaps Duncan will contribute a recipe some day.)

Glorious Day

While some of my country folk were marching up and down the streets of our cities and towns, we chose to head for the soft paths of the country park around the corner. It was warm and cloudy so I packed a bag full of light rain coats but we never needed them. Pippi came too, she adores the park with it's cornucopia of tantalising scents and trails. Duncan has been happy to walk when we go out now and doesn't want to sit in the buggy. Neither has he asked me to carry him for ages, thankfully for though he's fairly light and knows exactly how to snuggle his centre of gravity in to make the job of holding him easier, I prefer not to.

On the way, we stopped off for a few minutes in the smaller hilly grove opposite the main park. Duncan has decided that the narrow paths through the trees are train tracks and the hill is "Gordon's hill." He raced up it, pretending to be an engine, went all the way to a fork on the path (the "branch line") then ran back down the hill 3 times before we continued on our way.

As we walked the main road into the park, we were passed by dozens of cars heading for the car park by the beach. We decided to avoid that section and stick to the prettier and more secluded forest walk. Duncan was about 40m ahead of the rest of us. We have been walking out together often recently and I have seen him develop a much greater awareness of traffic and how to check the road before crossing. It's not something he was able to learn from me breaking it all into little steps, he just had to learn for himself with me by his side asking him "is it safe to cross?" or some such and then shutting up and watching him make the judgement. I'd still not let him be ahead of me by much on a busy road or cross the street in town. But that too will come.

So I was unconcerned even though he went out of sight for a few seconds as he turned a corner and as we came to where the paths diverged, a woman with her children was hovering, obviously checking that the child who's just passed her alone was being accompanied. She pointed to the path he'd taken and I thanked her and said, "was he looking a bit lost and lonely?" Her son answered, "he was saying, "I'm in trouble!"" I explained quickly that he was probably reciting lines from Thomas the Tank, that he's autistic and likes to tell himself stories as he goes.

As we continued, Lady, whom I think loves the forest more than any of us, climbed leaf cluttered banks and examined holes and in behind loose bark, with an excited little dog following her. Duncan was a bit concerned about Pippi running away when she was off lead, but he managed to tolerate it. Thomas is least fond of the forest, preferring the thrills of the playground. I told him that he can do all the balancing and climbing he wants in the forest instead. He wasn't convinced. But he was happy enough to walk and talk about the big questions of life, as he does.

We put the lead back on the dog for Duncan to hold. It helped keep him closer to us as there were too many choices of path to take and we didn't want to loose him. He enjoyed running beside the burn (stream) with her. We rested by the waterfall for a while then headed out to the village and the shop where the children each chose a treat. Duncan also requested milk and a packet of porridge oats. Then to home, where the chicken casserole Gordon had prepared earlier was just ready.

Thomas the Tank Engine, new edition

Duncan loves Thomas the Tank Engine. Of all the book formats depicting the bold Thomas and his useful friends, his favourites are the slim hardback editions by the publishers Ladybird and Buzz books.

He's been trying to collect the full quota of these books over the years, and since they're no longer being produced new, we have to buy them second hand via charity shops and internet shops or they're received as gifts from friends whose own children no longer want them. Recently he discovered a series of YouTube films from an obviously similarly dedicated fan, who has shown pictures from the books with audio from the Thomas and Friends TV series. Duncan has taken lots of screen shots of these and then adapted them with other images and even his own text, then printed these out on our old monochrome printer, coloured them in and stuck the pages together to create his own books.

Here are some of the images he made. This is his version of the back inside cover, listing some of the other titles in the series. It even has a bar code.

These are some of the inside pages that he has adapted with his own version of the text and his preferred choice of pictures.

It reads,

"prentley he herd a whistle
gordon was verry cros
insted of nise ching
coashes but the others not
help out he was
a lot of thery dirty trucks
a goods train
a goods train
he grumbled the sham muddy all
the shame mud edward laghted"

The actual text is something like (from memory)

Presently he heard a whistle. Gordon was very cross. Instead of nice shiny coaches he was pulling a lot of very dirty trucks.
"A goods train, a goods train!" he grumbled, "the same of it, oh the shame of it!"
Edward laughed.

I can see a few places where he has misheard the words and tried to fill in as best he can with alternative words. I like the use of "the shame muddy" for "the shame of it"! The spelling is interesting too. He's managed to spell some difficult words properly and has made some good approximations for the rest.

I asked him to read out for me and told him the correct words for the ones he mixed up, but he's so contrary he insisted on his own version. I reckon he probably did hear what I said but just didn't want to lose face by admitting he had heard it wrong.

Here's another of his self typed pages. Though the story is about Gordon it's illustrated with pictures of Thomas, one of them taken from his Train Simulator program. I'm sure there's a perfectly reasonable explanation even if I'm too blinkered to see it.


It reads:

"hurry hurry puffed gordon to the coashes
now all he gon to fast
gordon gruned at the coashes az thay rech the top of the hill."

I don't think that needs any translation from me.

Run Away to Germany

Duncan was, as he was kind enough to let me know, sad and angry. He was in his bed and hiding his tear streaked face in my arms as I held him and stroked him. I was both the source of his pain and hopefully, his comfort. I had told him off sharply for running about upstairs when it was way past bedtime and the others were trying to sleep. I'd been up and down the stairs many times trying to settle him and then I just snapped, said loudly he was being a bad boy and I had hurt his feelings.

He told me that he didn't love me and that "Mummy is a bad woman." Well, if I thought it was OK to say to him...

I said I was sorry for making him sad and for shouting at him. He wasn't ready to forgive too soon. He sobbed, "Duncan hates Mummy...Duncan loves Mummy."

Poor boy.

I acknowledged his confusion and said that I love him and that he is so sad and cross now and he will feel better later. He agreed that he would be "happy tomorrow."

He lay quietly for a while but it must have come to mind again and he burst out, "put my shoes on!"

I asked where he wanted to go. "To the airport."
How will you get there? "In the taxi. I will bring small Superman case."
Do you want to fly somewhere? "Duncan will go to Germany. Mummy will stay at home."

I did feel like laughing at his rebellion, but hugged him a bit tighter (which he likes), kissed his curls and told him he could go to Germany some day. Soon enough he lay quietly and I left him.

This morning I mentioned his planned trip and he said he wants to go with Mummy and Daddy and Lady and Thomas. When I started saying something else about our night time conversation he instructed me to drop it; "don't say it."

He's been interested in going to Germany and especially the Black Forest for a while now, ever since he started his interest in cuckoo clocks and watched films about their manufacture, often in German. I think one day we'll go there. Perhaps if we're in the country, we can call in to see the fabulous Gonzo.

Sunday

Sunday was another fine day. We had to take the train into Belfast to pick up the car, abandoned the previous night. We decided to go to Delamont Park for the first time since Duncan's 6th birthday. It was beautiful. Even the drive was pleasant. The children were in great form, Duncan was leading the others in a clapping/chanting game about hot chocolate. The park itself borders the gorgeous Strangford Lough. After riding the miniature train (we could hardly be expected not to!) we followed one of the many guided trails opting to go by the lake. Duncan started off in the buggy but lept out almost instantly to run after his siblings. We passed a lawn on which Lady performed various gymnastics/tumbling maneuvers. Various bits of exercise equipment dot the paths and the children all had a go on a device with handles and a swingy bit for the legs. Duncan and Thomas worked on it for 10 minutes, their wee legs swishing back and forth like upside down metronomes.

When we got to the lake, the children ran onto the stony beach and tossed stones into the water. Duncan found a few big stones he labelled stepping stones and lept about on them like a mountain goat. I forced myself to keep quiet, but was a bit freaked in case he fell in as we had no spare clothes.

A week without rain (yes really!) had left the grass looking dry and a bit grey. It didn't seem to have harmed the grasshoppers we heard but didn't see. Duncan was a bit freaked out by the preponderance of flying insects. No matter how I try to reassure him, he thinks they're all deadly stinging creatures intent on harming him. Eventually I hope, he will pick up on my lack of concern about these creatures and lose this fear. But for a while he retreated to his buggy and pulled his T-shirt over his face for protection while I struggled to push him up a bumpy hill path, That was my work out for the day.

After our walk the children played for a while in a really cool adventure playground. Lady and Thomas loved the long steep slide, but it was a bit too much for Duncan.

To finish we called into the food establishment preferred for our family composition; the McD drive through. Burgers, fizzy drinks and ice cream provided the perfect accompaniment to what had been a busy and just about perfect day.

Saturday

Gordon and I were watching one of the many Michael Jackson tribute TV shows with Duncan snuggled up next to me on the sofa. He particularly enjoyed Say, Say Say and had a little "wave your arms around" dance to himself. Then we played a few of our favourite tracks from the Off the Wall CD and danced about the living room. Lady and her friend came in and requested Thriller then demonstrated their entertaining interpretation of the zombie dance. Thomas was a tad embarrassed by it all.

I went into Belfast hoping to meet a blog buddie who was up attending an ABA conference. I had the wrong time in my head and arrived half way through her lunch hour. Eventually we found each other and had a few minutes of hasty but delightful conversation before she had to go back to one of the many talks. I sneaked in to listen to just one of them, to see if any of my criticisms of ABA and it's promotion were addressed, but I felt terribly guilty about crashing the conference so I went off to poke about in the shops for a while.

Later Gordon and I went out for my birthday dinner. I had been especially grouchy; we were late to leave and I was starving. I am not at my best when I am hungry.
But after sitting down and downing a drop of red wine, I suddenly cheered the heck up and we had a most delicious meal. We declined dessert, but were provided with one anyway; three of the waiters brought out a toffee cheesecake embellished with a birthday candle while singing Happy Birthday. I can thank my waiter chum for that kind surprise, and for the massive reddener [blush] it generated.

We met Phil afterwards, a smart and talented man who's a fantastic photographer and as into literature as Gordon is. Over a few drinks we yapped about all sorts and tried to get my husband interested in twitter and blogging. It had been a lovely night.