Donna Williams comments

Donna Williams commented on a recent post, not the post I wrote about her lecture, but the one in which I discussed the NI based P2P autism organisation. I have too much to say back to put it in the comments, so I've written a new post. Donna Williams (DW) said;

Just for the record, my own position is moderate. I have seen neurologists, immunologists, pharmacologists, pathologists in the treatment of my gut, immune and metabolic disorders which showed signs since I was 6 mths old (was dx'd as a psychotic infant at 2 years old in 1965, tested for deafness into late childhood and formally dx'd as autistic in the 90s). I am VERY AWARE that the PUB MED info is that 20% of children diagnosed with autism have primary immune deficieincy - ie see the Gupta studies (hence 80% do not) and that 20 year studies - Rosemary Waring - have found 60% are salicylate intolerant (therefore 40% not) and 80% can't digest casein and gluten - Paul Shattock (so 20% can).

I do not agree that the authors have shown irrefutably, that for all autistic children, 20% have primary immune deficiency, 60% are salicylate intolerant and a massive 80% can't digest casein and gluten. Nor have all these findings been verified and reproduced by other studies. And what hypotheses have they presented to account for these manifestations in the physiology of autistic children? I have read the 'undigested peptides, leaky gut and opiates in the brain' hypothesis, but have never read of any evidence to prove this. Here are a few references wrt autism and GF/CF diets that I just found. They do not show clear evidence of benefits, excepting one which claims that the diet reduced 'autistic traits', whatever that means: Cochrane Database Syst Rev. 2004;(2):CD003498

The one trial included reported results on four outcomes. Unsurprisingly in such a small-scale study, the results for three of these outcomes (cognitive skills, linguistic ability and motor ability) had wide confidence intervals that spanned the line of nil effect. However, the fourth outcome, reduction in autistic traits, reported a significant beneficial treatment effect for the combined gluten- and casein- free diet.

Pediatr Nurs. 2007 Mar-Apr;33(2):138-43

To date, there is little empirical evidence supporting the effectiveness of dietary restrictions in treating child psychiatric disorders, in particular, autism and attention deficit hyperactivity disorder (ADHD).

J Autism Dev Disord. 2006 Apr;36(3):413-20

This study tested the efficacy of a gluten-free and casein-free (GFCF) diet in treating autism using a randomized, double blind repeated measures crossover design. The sample included 15 children aged 2-16 years with autism spectrum disorder. Group data indicated no statistically significant findings.

J Dev Behav Pediatr. 2006 Apr;27(2 Suppl):S162-71.

The purpose of this review is to examine the available trials of gluten/casein diets in children with ASDs regarding the strength of their findings and also concerning points that may be useful in the design of future studies.Seven trials of these diets in ASD are critically reviewed; 6 of these were uncontrolled trials and 1 used a single-blind design. All reported efficacy in reducing some autism symptoms, and 2 groups of investigators also reported improvement in nonverbal cognition. Design flaws in all of the studies weaken the confidence that can be placed in their findings.

I don't doubt that some autistic people are intolerant to wheat and/or milk products. This is common among many people, autistic or not. Clearly, people will feel better on a diet excluding foods that make them ill. It's a good idea to get a dietitian's advice before trying diets such as these, especially with young children who can't verbalise how they're feeling. And notice, I said dietitian, not naturopath. 

 DW continued:

I happen to be someone whose language processing was helped significantly by biomed interventions at age 9 (zinc, C, multivitamin-minerals) and jumped from 10% to 50% - enough to eventually develop functional speech (previously fitting Semantic Pragmatic Language Disorder) then up to 70% with the use of Glutamine in my 30s. I'm also very aware of the use of omega 3s in ADHD and Childhood bipolar (also in Pub Med) which are co-morbid conditions which can complicate SOME children's autism.

I'm happy that you feel better on the supplements you mention. However, this doesn't mean that they are necessary for or will benefit others. The evidence of Omega 3's efficacy isn't as clear cut as the mainstream media would have us believe. Would you consider making it more explicit in your lecture, that you are not a scientist, and that just because these measures worked for you, it doesn't mean they will for others, and that a doctor's advice should be taken?

DW:

I do not support extremist chelation programs but as the SENSIBLE use of minerals in the management of gut, immune and metabolic disorders is low key chelation, I am on that and have been for decades.

I'm happy to hear this, and I have never written anywhere that you do support chelation. 

DW:

I have talked for groups on both sides of the culture-cure divide and will speak for any group I agree or disagree with if my information will help their audiences. As an autism consultant with over 12 years experience I'm VERY aware that biomed is NOT the answer for all people on the spectrum and that done in the extreme, long term and with no qualified medical supervision can be dangerous. As a consultant the approaches and strategies I suggest are environmental and biomed is only suggested if the family feel there are clear indicators that physiological disorders may be present and potentially contributing to neurological issues as PART of their child's autism. I hope this clarifies that in a black and white world, I live firmly in the grey.

I very much enjoyed your talk. I do think that your preaching of the biomed gospel, as a highly respected, much published and renowned autistic woman, may be used as evidence of your support for their views of autism as something to be defeated, something where the problems lie mostly within the autistic child and that changing them is the most important aspect to ensuring they make the most of life. I think that your message of respect, understanding, accommodation and acceptance is diminished by this. I would have loved to have heard you mention during your lecture that you are 'VERY aware that biomed is NOT the answer for all people on the spectrum and that done in the extreme, long term and with no qualified medical supervision can be dangerous.' I don't think that it is black and white for most people. Many of us use some type of biomedical approach. My own son used to take an iron supplement, as blood tests demonstrated he needed it. That sometimes left him a bit constipated, so I'd give him a few spoonfuls of laxative now and then. He's also taken a multi-vitamin regularly, as his diet isn't as varied as I'd like and I can't be sure he's getting all the nutrients he needs. So, we fall into the light grey region according to your analogy. 

DW:

As for GPs, many are great and have certainly helped me, but mostly they've helped with referrals to specialists. I do hear, however, of some GPs who don't help parents get referrals and fob off health issues as 'part of the autism' whilst being closed minded as to whether treatment of these things may reduce one's degree of autism. My personal experience is that GPs have been good about referring me to specialists when there are physiological issues they haven't been able to manage. Perhaps I'm lucky.

I'm pleased that you have had good experiences with your doctors. I have too. Many of the biomedical approach advocates, often talk about how their doctor doesn't know, care or understand anything about autism, and they have to go to the DAN! practitioners before they're taken seriously. I don't see this myself. Like you said, there are some doctors who are rude or ill informed, and who, as you say, try to blame medical issues a child may have, on their autism. I think that those clamouring about the huge percentages of people who have medical issues because they're autistic, may have contributed to this view among some doctors. The DAN! folk like to imply that there's this vast conspiracy and the mainstream docs are keeping the 'truth' away from the parents.

Happy Days

Wednesdays are busy days. Thomas has a gymnastics class at 3.15, Lady has gymnastics at 4.15, the boys have an art class at 4.30 and Lady has Brownies at 6.30. Thomas has also just started Jujitsu on Saturdays with Lady. He really loved his fist class. He always gets stuck in at these things and really tries so hard.

At home, the children have been playing and learning. I had a look through Lady's Brownie badge book to see what badges she might go for. It seems like she already knows enough to get most of them, or already can do the activities for the practical ones. It was quite reassuring to see, that she has picked up so much knowledge and skills.

Thomas was recently reading a story with me on the Starfall site. Duncan came and sat behind me watching and listening. Each time we went to a new page, Duncan would read it, really quietly to himself. Thomas took a lot longer to decipher the words. Duncan seemed to find it easier to read, when I wasn't focusing on him. So I just kept on with the activities, and he kept getting everything right. He actually knew a lot more than I thought. He has been playing at these sorts of sites by himself, especially the Starfall site. I can often hear him repeating the words after the narrator. Yesterday, I overheard him practising how to say 'Jacques Offenbach'. It's really good for self-directed learning; the type he's best at.

Thomas has been asking lots of questions about numbers recently. He keeps doing sums in his head. He'll come up to me and say, 'I know what 7 plus 7 is; 14.' I taught him how to do more sums, by 'putting the number in his head' and then counting on using his fingers. He picked it up right away. I can really see how just learning these things as they come up naturally works. I didn't have to sit down with a workbook and tell him, 'today you're going to learn to add'. Lady spent ages on these things at school, and we still had to re-do them when she started to learn at home.

Another thing we've all played at recently, is making little films with our photos and music. I was inspired to make one about Duncan when I was sent a link to a beautiful song on a comment here. Duncan loved the film about him and decided to make one of his own. It was a very serious undertaking. He decided what photos to use, the order the should go in, what to write on the titles and what effects to use. He's very happy with the finished product. Of course, Lady and Thomas wanted to make films about themselves too, so they each helped me make a couple more funny films.

We've also had many pleasant, dry days and been able to play in the garden or the park. The children were feeling so sorry fr their schooled friends as they collected conkers and went on the swings and roundabouts on a sunny autumn morning.

A couple of days ago, a woman who has just started out with home-education, contacted our local support group. I mailed her back and after a few messages, we discovered that she lives just round the corner from me! So yesterday she visited us with her 2 young daughters and baby son and we all had such a nice time. Home-educating neighbours, how lovely!

Art Class

Duncan's big thing at the minute, is Legoland, especially the Sky Rider, Duplo train and Orient Expedition rides. A friend sent him a stack of the visitor maps from England, and he's spent ages examining them. We have also had several of his wooden trains adapted to resemble the Legoland rides, we've drawn pictures and made books, googled and looked on YouTube.

Last week I mentioned a new art class I was taking the boys to. They've been twice now. During the first week they painted T-shirts. Duncan wanted a Duplo train on his. I drew the outline and he filled it in. Thomas made a pattern on his shirt and both boys opted for large shirts they could wear to bed. They looked really good and Duncan has worn his a few times. The second class took place last Wednesday. Duncan had decided that this time he would paint a Sky Rider train on a T-shirt. But this time, the planned activity was to cover a page with oil pastels, paint over them and then scrape off the paint to reveal the colours under. Duncan kept asking about the T-shirts and was upset that there weren't any. I tried to explain what we were doing, and did a quick demonstration. He still wasn't interested. In the end, he dabbed a few spots of paint onto a couple of wooden trains he'd taken with him. I persuaded him to colour and paint and scrape a small page. I don't know if I should bother taking them there any more. Is it beneficial to try to engage him in a task he didn't choose? Should I just let him do the drawings and paintings he want to do at home? The class might give him a chance to try new media, and perhaps learn to take external instruction. I would like to see him join other classes and groups eventually, like his siblings.

I think we'll keep going for now. The teacher tends to take a long time, talking at the start about what they're going to do. Duncan needs to get stuck in as fast as possible to engage his interest. I will help him as much as I can, making it more fun and understandable for him.

P2P Autism in Northern Ireland

The Donna Williams Belfast lecture was sponsored by a new Northern Ireland autism group; 'P2P Autism Support Group'. Their logo consists of 3 puzzle pieces, encircled by the words, 'Parent 2 parent working together to support educate advocate'. Their leaflet was handed out to everyone who registered for the lecture. It's second paragraph started with, 'Estimated rates of autism in the UK now stand at 1 in 58.'

Uh oh. That sounded familiar. After the lecture, I asked some people who were part of the P2P group, where this figure came from, and was told it came from a report by the Children's Commissioner dated March 2007. I mentioned that it was also quoted in the recent (appalling) Observer article. But no, I was assured that the report pre-dated that article and was available on-line if I wanted to check.

(I did check the Children's Commissioner site later, but could not find this report. If anyone can enlighten me, I'd be grateful. I did e-mail P2P (p2pautism at yahoo dot com) asking for clarification of the figure, but have not yet had a response.)

The information on the leaflet continued, with several good points;

Those of you here today working in the education and health systems will know that you are under immense pressure at meeting the needs of most of our children, many of whom are undiagnosed and are not receiving the help they deserve. Those of you who are adults or who know of adults who have an Autistic Spectrum Condition will be painfully aware of the need for change in terms of employment and independent living opportunities.

By then I was thinking, maybe the 1 in 58 slip was an aberration, that this group really did have the best interest of all autistic people in mind, and perhaps I could get involved.

The next bit talked of 'the current self-fulfilling prophesies that abound regarding Autism' and how the "professionals" present autism in a way that 'is often negative and sometimes soul destroying.' Then it stated that autism isn't a disease and there is no "cure", but that the new paradigm is that it is "treatable". Children worldwide are being successfully 'treated for their individual "Autism's".' (There were many words in quotation marks in this short document, and 'autism' was always capitalised.)

What followed, clarified that this is not a group I'll be joining.

Approaches such as biomedical interventions address the gastrointestinal problems our children commonly suffer from, as well as their detoxification, allergy and immunity issues, all contributing to so-called "behaviours". In the rest of the UK many parents together with their informed doctors are treating Autism as a medical issue, because their children have real medical problems, problems often ignored.

How often must it be said, if your child has medical issues, SEE A PROPER HEALTH PROFFESSIONAL! Get it sorted, and that applies whether the child is autistic or not.

Finally, the document told of thousands of books and organisations on the internet, even doctors and teachers, who think of autism as treatable. But 'this shift has not reached these shores.' (Thankfully, thought I.) Professionals were then encouraged to listen to parents, to keep abreast of currents autism research and to buy books about it.

Also available at the lecture, were copies of a UK based magazine called 'The Autism File'. I was once given a stack of these, when Duncan was almost 3, and I was briefly seduced by all the miraculous 'recovery' stories contained therein. Gordon was unconvinced, and after a bit more investigation, it was clear that none of the 'treatments' mentioned had any scientific validity. I dumped the magazines in the recycling bin.

However this time, I took a copy home to read about the latest trends in the UK autism biomed world. Interestingly, it contained an article by the chair of the NI 'P2P Autism Support Group', Karen Buchanan.

She began by bemoaning the poor standard of services for 'children with ASD's' in NI, which she reckons is a legacy of the terrorist violence and political unrest we suffered under for 30 or so years. Here, I am in agreement.

She wrote;

Children with ASD's continue to be ignored, and segregated en masse into "special" facilities using cheap, mediocre, and in my view, damaging teaching methods.

I don't know what teaching method she holds to be 'damaging', but I would agree that the education system is not supporting autistic children properly, that parents have to fight bureaucracy to get a Statement of Educational Need and to have the proper provision supplied. There is not adequate funding, training or understanding.

Later she wrote;

On the medical side of things, paediatricians love to dazzle vulnerable and uniformed parents with Wing's now passé and wholly inadequate "triad of impairment" explanation of autism and its concomitant "deficits". This is meted out with the most depressing and singular fatalism, that autism is a debilitating and lifelong "disability"; that parents should just make the best of what they've been "given" and simply get on with it.

I don't doubt that there are some doctors who act as she describes. Such relics must be brought up to date. The diagnostic process needs a total overhaul, in terms of speed, who provides the diagnosis, how it is presented and what advice is given. Personally, I have met with several paediatricians, a speech and an occupational therapist, a clinical and an educational therapist since I moved here. They were all knowledgeable, helpful, respectful to my views and decisions and willing to learn from me (wrt home-education in particular).

There also seems to be a cultural difference in Northern Ireland of not wanting to bring attention to ones self and/or complain. Over and over again, I have witnessed parents of autistic children reluctant to tackle the education boards or their children's doctor for fear of "causing a fuss". I am originally Canadian and though I have lived in Belfast for 15 years, I find this hard to fathom, coming from a country that celebrates the "individual". I do not share other parents "unhealthy" respect for doctors either, doctors who are generally ignorant of autism, and worse, are afraid of their own ignorance.

Well, it's an interesting anthropological study of the local population. I'd actually concur with several points raised. Parents do need to stand up for their children, and not accept sub-standard education or health care. However doctors know a heck of a lot more than others about medicine, and if I'm not happy with what I've been advised, I'll take a second doctor's opinion over the knowledge of Google.

I personally didn't accept anything I was told at face value when my boy was diagnosed two years ago. I knew he was ill and he needed help fast. He has been on a biomedical intervention protocol (DAN) since the day after diagnosis. He was in an ABA (Lovass) program for 12 months. He has had AIT training, Verbal Behaviour, sensory integration vision therapy, the HANDLE method and now we are pursuing Sonrise.
...
After advising my son's paediatrician that we would be pursuing the biomedical route and after asking for certain blood tests to be done, the doctor implied "child abuse". This doctor did not have any comment about my son's raw excema or the fact that he was constipated for weeks at a time or that he was constantly developing strange viruses.

This doesn't make sense to me. It sounds like her son had genuine medical problems as well as autism. How would the doctor 'not have any comment' about eczema and constipation? Did she ask him? Doctors see these problems with children every day. Is she saying that the doctor somehow ignored her request for treatment of these things, or implied that they were somehow linked to his autism? If he did, it sounds like she should have complained, and we know she's not afraid to do so.

Anyway, her son underwent a gamut of interventions, non of those mentioned specifically have any proven benefit. I'm always interested in people who drop ABA for Sonrise, since they seem to be virtually opposite approaches. (Sonrise, for those who don't know, is a USA based cult, where you go on a hugely expensive training course, and learn how to 'love' the autism right out of that child.) Anyway, the article continued;

I thank God for the internet. Like so many other parents the internet has provided me with a wealth of support and information, that was impossible to access in real life. I now know parents from all over the world. It says a lot that parents must learn from their computers in lieu of their doctor's knowledge.

I think the internet is marvellous too, and I also communicate with people worldwide. It's also really cool to be able to use resources like Pubmed when evaluating some of the absolute crap you read.

Well, it goes on to talk about how P2P autism is new and fantastic and is going to shake the place up, and ends with;

As a "biomed" mom, who only cares about what is good for my child ad for other children like him, I personally will not rest until terms like "methylation cycles", "leaky gut syndrome" and "yeasty poops" become part of the vocabulary of every "autistic" household in Northern Ireland. I also will not rest until parents like me are provided real choices about how to educate our children, and are given the means to pursue those choices. Watch out Northern Ireland, the Troubles are over, but more trouble is on the way via parents who are getting organised.

Wow! Get ready, cause here they come!

It's the DAN missionary, out to convert the natives to the true path of righteousness and clean guts. I can understand that some reckon this stuff has helped their own child, but why do they need to proselytise?

I'll just advocate for my son, in my own way thanks.

Donna Williams in Belfast

On Tuesday I attended a lecture by Donna Williams. I was interested to hear what she had to say, and to see who would be attending and what other issues would arise from the event. There was to be plenty to think about.

Ms Williams is a talented, energetic and engaging speaker. The lecture title was 'Autism as a Fruit Salad' and was outlined on the poster;

What if Autism Spectrum Conditions are the combined developmental effect of combinations of things and not single conditions? What if they are ‘cluster conditions’? What if an Autism Spectrum condition is not like a piece of fruit but more like a fruit salad? The combinations in those fruit salads might differ from person to person and, so, the best collection of approaches, treatments and adaptations would differ too. One-size-fits-all-approaches that assume they address a single condition would be limited. But, if we could identify the ingredients in each person’s ‘fruit salad’, then we might have the basics for an individualised program based on the systems at work for that particular person.

All people with an Autism Spectrum Condition have an ‘information processing difference’ to Non-Autistic people. Commonly though, they may also have anxiety, mood or compulsive disorders and combinations of more 'Autistic’ personality traits, each with their own set of natural motivations and distresses, which may run counter to non-Autistic ‘normality’ and which many non-Autistic people may find as 'odd', 'strange', 'abnormal' or alien as the non-Autistic person's world may look to the person on the Autistic Spectrum!

This lecture will lay out the ingredients commonly found in those ‘fruit salads’ and the very different treatments, approaches and adaptations found useful in reducing the disability issues associated with each so that the abilities can more easily shine through.

As I sat listening and watching Donna talking and gesturing, I wrote down a few points that struck me. I kept nodding, thinking, 'Yes! That's it exactly!' as she spoke about the effect of environment on autistic people and the difference versus deficit model. As the lecture progressed however, I was noting more things that I didn't agree with. First she spoke about cranial sacral therapy, saying it benefited her, which I don't doubt. She suggested it could benefit other autistic people too, and again, maybe it could. But as a technique, there's no evidence of any effectiveness and the claims made sound rather like, oh what's that word...quackery.

She also mentioned all sorts of medical problems, and again either stated or implied (I can't remember) that these are common place in autistic people. She mentioned her own issues; salicylate intolerance, immune deficiency, gluten and dairy intolerance. She recommended that anyone thinking that their children may be affected by such issues, should investigate GF/CF diets, low sugar and low salicylate diets. She referred to the 'leaky gut' theory, stating that for many autistic people, gluten and casein can act like opiates. In fact, when one woman asked for advice on her son's habit of head banging, Donna again mentioned this, saying this is sometimes a symptom of what she termed 'brain fog', that is, undigested enzymes crossing the blood-brain barrier.

What was missing from all these discussions of medical issues, both in the main lecture and while answering questions from the audience later, was any mention of doctors or dietitians. Donna mentioned naturopaths, chiropractors, reflexologists and osteopaths. These are not practitioners of evidence based therapies.

In my opinion, medical issues may occur along with autism. Not all autistic people have the medical problems identified by Donna in her lecture, and many non-autistic people do. Whether your child is autistic or not, if you suspect that there's is a medical problem, I think you should go talk to your GP or paediatrician, who will take a history, order appropriate tests, and work with you to find a solution.

At one stage, Donna asked any parents whose children ate tooth paste to put their arms up high, so she could tell them off, since the children are ingesting fluoride, which , she said, is used in rat poison. I restrained myself from calling out the word 'DOSE!' (Actually, I agree that it's a good idea to teach your children to spit out toothpaste, and to use only a small amount when brushing teeth. Duncan used to suck the toothpaste, but spits now. It's just another one of those developmental things.)

Donna also promoted the use of glutamine supplements which is, she said, is a super brain-food. She discussed how it helps her tremendously, and she told how she has seen many autistic children make great progress while taking it, such as saying their first words, or starting to talk in sentences. She addressed a group of secondary school students in the audience directly, asking them if they ever took glutamine to help them concentrate in exams, and recommended that they do just that.

She then spoke about the huge benefits she saw personally on a small dose of respiradol, and again reported that she knew of many other cases where a neuroleptic (though she didn't use that term) helped someone with autism. She discussed how she had been taking expensive immune boosting drugs for years, the same kind, she said, taken by cancer and AIDS patients. However, introducing the respiradol, which she later changed to seroquel, meant she no longer needed the immune boosting medication. She said that though parents are reluctant to use medication with their children, that these can sometimes have great advantages and she encouraged parents to investigate this option. Again, I would have been more reassured if some of the disadvantages of neuroleptics had also been mentioned, and if she had emphasised that these decisions must be made after extensive research and discussion with a doctor.

There was much discussion of autistic 'cat' people versus NT 'dog' people. I wondered if she knew any autistic dog people?!

After the lecture, there was a slide-show of photos of herself as a child (pre-nine years old only!) and as an adult, as well as some of her art, and she sang live. It was very touching.

The questions at the end were all from parents, looking to interpret various 'behaviours' of their children and asking for her advice. I wanted to ask several questions too, but refrained, as my questions were not like any of the others. I was, to be honest, a bit nervous about standing up and querying some of the things mentioned here, and was worried it might be rude to do so. I wanted to ask in particular about the ethical issues of having autistic children take therapies that are not evidence based.

Later, I was looking into some of the therapies she advocated. A search on 'autism and glutamine' came up with the 'Sunderland Protocol' which also refers to many of the other biomedical interventions Donna mentioned. I'm happy to be corrected, but I'm not aware of the evidence in favour of this protocol, beyond the usual anecdotes.

Another hit was to the Holford Watch blog, and a post stating;

Patrick Holford frequently advises people to heal their gut with the use of glutamine. He particularly recommends the value of glutamine for gut-healing in children on the autistic spectrum.

Restoring a healthy gut by supplementing digestive enzymes and probiotics is known to produce positive results in autistic children. The amino acid glutamine is especially important in restoring the integrity of the digestive tract. Drinking 5g dissolved in water just before bedtime can help heal the gut.
[Emphasis added.]

Some version of that advice appears in a number of the Holford books and websites. Oddly enough, the advice on this topic on Food for the Brain (FFTB) has been modified to indicate that glutamine may be contra-indicated with children with ASD (autistic spectrum disorders), but Holford has yet to update any of his other writings to reflect those changes.

The amino acid glutamine is an important gut healing nutrient but may be contraindicated in autism because some autistics have protein deamination problems leading to production of ammonia which doesn’t mix well with glutamine.
[Emphasis added.]

...

It almost goes without saying that there is no support for the gut-healing, glutamine, autism assumption in the indexed medical journals.

I can say this for sure, I don't need to take advice from Patrick Holford. It appears that to some extent, his recommendations for 'gut healing' in autism parallel Donna's.

Obviously Donna Williams knows exponentially more than I ever will about autism and I do not intend to dispute what she says about her own health and medication. I take issue with some of the advice meted out and personally disagree with that aspect Donna's work. However, the lecture was very good at getting across many positive messages about autism acceptance and working with a person's strengths and favoured learning styles. There was great advice about making simple but effective adaptations. There were moving images and beautiful singing. It was lovely too to be on the company of someone whose work I have read and who is such a respected writer.

The farm, some trips, and thinking in pubs.

A few days ago, my dad called and asked to borrow Duncan for the day, as a travelling companion. I consented (obviously!) and they headed off for the day, to visit my aunt and others back home. Since I had only 2 children to look after, we decided to go out. A trip to the farm was the consensus decision. We had a nice time, and were all especially enamoured of a tiny Jack Russel puppy who was the last of the litter born to the farm dog to be re-homed. Lady loves all the animals; it's not a trait she's inherited from either her parents. Thomas preferred the playground so we played there for a while. We walked about and they loaded my pockets with black berries.

Duncan returned, having had a grand day out with his Granada. He's had an ice-cream cone, and a new toy car (the Fat Controller's car, no less...which he adapted asap to look more like Brum).

My sister returned for a few days holiday and we went over to the home town together for a few days, leaving Gordon and the children behind. We got together with my favourite aunt and uncle and my brother and his girlfriend for a great night out in a local restaurant. The following day, lil' sis' C and I dootered round the town, and in the evening we met up with a few cousins in a pub. That was some night! We all ended up dancing and singing. I felt like I was in the middle of that scene in Educating Rita where Rita is siting in the pub feeling disconnected from her husband and family while they're all singing some inane song, except I wasn't feeling Rita-ish. Although, by analysing it, maybe I am sorta Rita-ish. Anyway, it was fun.

Yesterday I went to listen to a lecture in Belfast by Donna Williams. It was very interesting and I think I'll go into it more later.

Today, Lady and Thomas have their gymnastics classes and I've just found out about an art class I can take Duncan and Thomas to, so we'll be doing that as well. I hope it's good.

Darling Boy

For the past few evenings, Duncan has taken to wearing a nightie belonging to Lady. It's pale lilac, long-sleeved and reaches to his calves. He teams it with a top-hat (from Lady's magic kit), Thomas's glasses (thankfully, the prescription is very mild), some black shoes and an umbrella. He is, of course, John Darling from Peter Pan.

He also enjoys playing Dogz, a PC virtual pet game. He adopts the 'mutt' then dresses it up in a top hat, and does something to make the dog run around on the screen on top of a picture he's found of the children from Peter Pan. Then I realise, the dog is Nana! I love these insights into his amazing world.

Holiday Snaps

I wanted to stick on a few photos of our holiday, the first we've ever taken all together away from home. I think these capture some of the happy times we had.

This last photo shows Duncan, engrossed in watching a hairy caterpillar make it's way across the path, while the concert was taking place (with Lady and Thomas performing) in a large, loud room nearby. Duncan rightly opted to stay outside and passed the time happily riding a tricycle, playing with a little toddler he made friends with and watching the caterpillar.

How to fry an egg

So you fancy a fried egg, and your mum isn't sorting you out fast enough so you do it yourself.

First you get the frying pan and pour in a bit of olive oil.
Then you get the carton of eggs, and a small plastic container. You don't like egg yolk, so Mummy always separates the eggs and saves the yolks for use in a pancake or something else later. You've watched this loads of times and know just what to do. You crack the egg, use the shell to separate the yolk and pour the white in the frying pan onto the oil, and drop the yolk into the plastic container. Then you go get Mummy, because even the self reliant 7 year old knows not to turn the hob on.

Mummy is rather surprised to see what I've done so far, but at last, she performs the last step and I get my fried egg white, coated (obviously) in ketchup. Yummy!

Monster Autism in the Daily Mail; Update

I really should know better than to take an article in the Daily Mail newspaper at face value. When I wrote about a recent diatribe on life with an autistic child, I took it to be the words of the mother whose name was under the headline. It was not. It was a selective adaptation from her book. The author of the book, Jan Greenman, commented on my post. She was polite and was keen to set the record straight about her son. I apologised to her for the absolutely unnecessary personal insult I levelled at her in my original post, when I thought she was the author of the actual newspaper article.

Jan wrote in my comments section about the paper's decision to feature her book;

I was so excited, assuming that it would be in the form of a book review and give people, as my book does, the truth about Luke's life with labels. I have written a book about all the aspects of Luke's life and the book is NOT about me, although the Mail have written it from that perspective, picking out probably all the references to me in the whole book!

She also wrote;

Luke is so brilliant at talking for himself and explaining how it feels to be him. He has written tips at the end of each chapter for parents to try and understand what was going through his head when he behaved in a certain way and everyone who has read the book says that they laughed, they cried, they couldn't put it down but they understood so much more at the end of it and had so much respect for Luke. He has had the toughest time at school and I have fought tooth and nail to get him any kind of help and recognition of his differences and how they affect him. He has many sensory sensitivities and he is acutely aware of who likes him and who doesn't and acts accordingly. He wasn't diagnosed with Aspergers Syndrome until he was 10yrs old, which is why I didn't understand him properly and he didn't cuddle me until he was 11. Because he was my first child, I just didn't know what had hit me and yet I loved him utterly.

Isn't it a pity that these words weren't published in the paper. I had written, 'I have judged her by her words. I know this is a newspaper article and journalists can twist the story to fit the template that sells more, but she has written a book, and I can't see a single positive word from her in the whole article.' I was right about the journalist but wrong about Jan Greenman.

Goodbye Granny

My granny died on Saturday morning. She was 95 and had been getting increasingly ill over the past few weeks.

She was a marvellous woman; loving, kind, exceedingly generous, full of joy and smart as a whip up to the end. My dad was one of her 8 children, I am one of her 35 grandchildren and my children are among her 32 great-grandchildren. (I think those numbers are right; perhaps I should add error margins!)

We used to all gather at her house every Sunday afternoon when I was a child. We'd run around the field behind the house, and eat beef sandwiches and shop-bought cakes; which was a treat for me since we only ever got home-made at home. Granny lived in the same house all her life. My Granda, her husband, died 4 years ago. They had been married for 64 years. Two of her brothers never married and lived their whole lives in the house with her, Granda and their family.

Over the past few years Granny become more frail and my aunt, who continued to live at home when she married and had children, has taken such good care of her. Their house had an open door policy and people were regularly calling in and were always made welcome. Granny loved visitors; knowing what you were up to and where you were going. She enjoyed seeing us dressed up, always saying 'health to enjoy' when we showed off a new outfit. Most of all, she loved to see all the children who came to visit, or my aunt's own grandchildren whom she also cared for. Granny somehow managed to remember all of us and know where we were living and what we were doing with our lives.

Gordon wasn't around. He's on a conference in Korea. But my sister flew in from London, and went with me and the children, back to Granny's house for the wake. Lady had been to my other Granda's wake so knew what to expect, but I explained to Thomas that my Granny's body would be in an open coffin in her bedroom and we could go in to see her. This we all did, and they were not in the least bit fazed. I was upset to see her, especially when I went into the living room and saw the empty space where her chair always sat beside the range cooker.

Duncan didn't like the house full of people, which is only to be expected, so he spent most of the time outdoors. Thankfully, the weather was great. Lady and Thomas also ran around in the garden (which used to be the field I played in) with the other children who were there. I had lots of help looking after Duncan, especially from my Dad (as always) and my brother's girlfriend, who took all my children to her house for a few hours leaving me peace to talk to the relatives, friends and neighbours who were gathered or just paying a short visit. My sister was among those on tea duty. Endless trays of sandwiches and buns were dispensed along with a never ending supply of tea. It used to be worse; I can remember wakes I was at as a child, where there'd be dishes stacked with cigarettes for the visitors!

The funeral was held the next day. The church was packed. A cousin from my mum's side of the family was kind enough to stay in my car with Duncan while he watched a DVD. He'd been crying 'no go into church' when we arrived and there was no way I was going to force him into that big, scary building. Thomas made me laugh during the ceremony; the priest said the line 'where we live forever...' and Thomas said incredulously, 'We live forever?!' Anyway, for a boy not used to church, he behaved wonderfully. In fact all 3 children were marvellous the whole 2 days, and I told them when we were driving home how proud I was of them. I had so many people comment on what lovely children they are. Many of my relatives delighted in Duncan too and commented on how well he's doing. I was a bit concerned by his shouting, especially when he shouted a rude phrase in his discomfort or frustration. Mostly he was very happy, if extremely mobile, and I (and my helpers) did a fair bit of running after him to be sure he stayed away from the open path to the road.

It was sad saying goodbye to Granny. She was a big part of our lives for lots of us. She was always there. But I take comfort in remembering her, and knowing she was happy, in spite of the hard times, hard work and bereavements she lived through. She loved her family, loved a celebration, and will be remembered for a long time to come by great many people.

Best Friends

But to get back to what this blog is really all about, here's a little update on the family.

First, on Monday, we said goodbye to M. the wonderful young woman who has been coming round almost very week for almost a year to play with Duncan and the others. She is starting full-time work as a primary school teacher. She had bought gifts for all 3 children (Underground Ernie engines for the boys- very much appreciated!) and had a lovely card for me, thanking me for inviting her into our home every week.

It had been entirely our pleasure. She is a delightful, kind, fun and intelligent woman. Her class is lucky to have her as their teacher. She was so open to the children, always tried hard to engage Duncan and gained his love in return. She wanted to know a bit about autism to better help any autistic children she may teach. What a special person she is, to have given up her time for free, for that, but mostly to play with a little autistic boy, and to give his mum a bit of time off on a Monday morning.

We will hopefully see her sometimes on the school holidays. I hope so, because we've all made a friend.


And talking of friends, Lady's best friend in the whole wide world came to stay for a few days with her mum and sister. Just like last year when they visited, we all just went right back to familiarity and comfort with each other. This time we went to the Folk and Transport Museums, and S. took the 3 girls on the train to W5. We don't have our 7-seater car anymore so couldn't all fit. They also went to our neighbour's birthday party. Apart from that, we all talked lots and lots, and the children played, dressed-up, created dance sequences to Mika songs...oh my.

I'm so happy that we're still in touch. I'm very fond of them all, and Lady and S. have special bond. When Gordon dropped them at the airport, Lady went too. He told me that she was craning her neck looking out the window as he drove off, and when he asked her to sit back, she had tears running down her face.

Disagreement

I've noticed a blog post that kindly linked to my own post on the recent Daily Mail 'Monster Autism' story. To reciprocate the link love seems the least I can do!

The writer tackles autism cures;

If, hypothetically, a cure for autism existed, would you administer it?If you would, then you are a “curebie” and you should expect a vehement response for your opinion. Neurodiversity, as the argument goes, is no less a valid principle than racial or gender diversity. Advocate a cure and you are no better than a racist, a chauvinist, or any other bigot.

See, the thing is, that's not what I think a curebie is. There IS NO cure for autism. If somehow one was made available, I would not administer it to my son; I would let him decide for himself when he's old enough if he wanted to have a major and drastic change in his neurological make-up.

There's a great post here by Abfh called Defining Curebie-ism. I'd agree with her definition of the word.

The blogger continues;

Except we have to pause for a moment and ask who is proposing this particular opinion, and why?

The answer is simple; it is High Functioning autistics and aspies, advocating it because they want to be accepted for who they are, not rejected as freaks. Damned good point. They have every right to be offended and upset by the treatment they often receive. BUT ARE THEY SPEAKING FOR MY SON?

Read this carefully:

NO THEY BLOODY WELL ARE NOT.

There is a big difference - an enormous, fundamental difference between curing someone whose disability prevents them from understanding and adopting the social niceties of life, and curing someone whose disability leads them to smear shit all over their home, beat the crap out of their siblings, and cause sleep deprivation to the point of clinical insanity to their parents.

Autistic rights and the principle of neurodiversity expires when it imposes unreasonable demands upon other people who did not volunteer, and who have rights of their own that are rejected without any thought whatsoever.

I don't understand that last paragraph. What does he mean by 'autistic rights ... expires'? And why point out that parents didn't 'volunteer'. I don't subscribe to the notion that only those who can manage it are 'given' a disabled child either. It just happened, sheer chance. Just like the fact that 2 of my kids have curly hair, 2 of them are boys, one of them happens to be autistic.

Then there's the link to my earlier post;

When I read blogs like this, with comments like this:

Having an autistic child is tough and causes you to change your expectations of family life. Parents who adapt and accept this, and their children, are more likely to thrive.

then all I think of are the words “glib,” “patronising” and “bastard.”

Gee, it's nice of you to care.

The delightful man finishes with;

Since when did the arrival of a disabled child mean that parents should renounce their own expectations of life accept the priorities of their child? It doesn’t apply to parents of children with any of the other disabilities I teach - so why the fuck should autism be different?

Why? Because the service providers are ignorant, and because there are too many idiots like AFF and other ‘autism liberationist’ groups who think that their needs are best met by stamping underfoot the needs of their carers.

Wake up and smell the coffee, guys - you have a disability. It imposes burdens of care upon others that are only met by emotional bonds and goodwill. Stop taking the piss, otherwise you might find the goodwill has a short shelf life.

I just find this odd. The arrival of any child, disabled or not, means that parents have to adjust the expectations of their own life and for a while at least, the child's needs take priority. It doesn't have to mean you live just for your children, that you are a slave to them. But you have to expect that things will change from the entirely different scenario of a child free existence.

The author could really do with reading up on the social model of disability too.

Oh and the blogger known as JB or FS (who called me an ignorant fuck and a despicable hypocrite on my blog) loved it, calling it a 'great post'!

I was surprised that the blog I've mentioned is linked to from the ASD Friendly site, which I used to read and seems to have lots of useful information, and is, as far as I can tell, free from quackery.

Happy Holiday

We all had a marvelous time on holiday in Donegal. Even the weather was surprisingly fine. Though, last Saturday, when we arrived at the caravan park, it was fairly bleak; wet and windy. We all donned boots and rain coats for our first walk around the site. Duncan got soaked, because as far as he was concerned, when you're wearing wellies, you're supposed to jump into every puddle! He was running along a muddy path, through a patch of puddles, saying 'Big Thunder Mountain!' He was pretending to be the coaster splashing through the water.

By Sunday afternoon it had dried up and from then on it stayed mostly dry with just a few light showers once or twice. Knowing the climate in Donegal, and given what an awful summer we've had so far, that was astounding...and welcome.

The site had a great playground, a couple of bouncy castles, a climbing wall and a bungee-jump-trampoline thing. There were little go-kart bikes and a bike that the whole family could ride, with the adults steering and peddling. I also made use of the laundry; just 'cause we're on holiday doesn't mean everyones bladders last the night.

Duncan loved the go-kart, and took one out for a while every day. Whoever was accompanying him had to run fast to keep up. But what was great about the place, was we didn't need to be right there at his side all the time. We could let him go off 30m or so in front of us, knowing that he was safe enough.

Lady and Thomas were allowed to go to the playground without us. It was such a big deal to them, getting that little bit of freedom. Thomas made friends immediately, he just asked the other children if they wanted to play with him. Lady did as she always has, and waited for the other children to approach her. By the end of the week they both had a little gang of buddies. The site provided a sort of summer club, with organised and supervised activities for the children. Lady and Thomas went to several of these; tennis, rounders, arts and crafts, football, dance-camp etc. Watching Thomas play football was hilarious. He was all effort and no effect. He ran around lots, always making a big dramatic start like Sportacus.

The site was in the Fanad Peninsula, a stunning part of the country and we enjoyed some beautiful views driving around. Duncan was frightened when we were on the mountain roads, especially whenever we stopped the car or when there was a panoramic view over the sea. The steep inclines worried him too. He was saying, 'brakes, brakes Mr Conductor', 'I don't want to die!' and 'hold back, hold back' as well as a few other train related phrases. I held his hand and kept reassuring him that we were fine and safe, that Daddy was driving very carefully and he seemed to be mollified.



We went to the beach a few times. One trip was to Ballymastocker Bay, right at the north of Fanad head. This beach didn't border a mere lough, this looked onto the wide Atlantic Ocean. We'd bought short wetsuits for the children, and they had such a magical time splashing in the sea and digging and rolling down sand dunes and clambering over rocks. It was actually warm and sunny that day (I topped up my farmer's tan). Gordon and I sat on the soft sand, away from the children on the nearly deserted beach, watching them and enjoying a moment of perfect happiness. (Image taken from the Donegal Ancestry Centre website; we forgot the camera that day.)

Of course we all had our moments of sub-optimal temper. But we always got over it. Even on the last night, when there was a little concert organised as an opportunity for the children to show off the songs and dances they'd learned in dance-camp, Duncan was manageable. He stayed outside the barn which was serving as the concert hall and was too noisy and crowded inside for him. He passed the time riding a tricycle up and down a wooden ramp. Gordon and I took it in turn to stay outside or to stand in the doorway, so we could keep an eye on Duncan, while watching the show.

Thomas and lady were taking part in the concert. In their first number, they were doing a wee dance. Thomas performed the whole thing with his back to the audience. It wasn't that he was shy, it just never seemed to occur to him to face us! He did better the next time (after I reminded him that we did want to see him!) and was so funny shaking his little booty. Lady had her big moment in the spotlight, when she and another girl took the mike to sing 'Chim Chiminee' (from Mary Poppins) and she did great!

Anyway, we're home again and glad to be back. When we were leaving, lady and Thomas said they wanted to go back to the same place next year. I asked Duncan if he wanted to go there again too, he said 'Yes I did!'

Daily Mail; 'My son is a monster with autism'

I know I shouldn't. It's in the Mail..ignore it! They always print junk. (Melanie Phillips, anyone?!) But this article is just too horrible. I left a comment which will probably not be published. I have left critical comments before on Mail articles, (autism and MMR junk usually) and they have never been published. So I wanted to copy the comment here instead.

'My son is a monster with autism'
By JAN GREENMAN

I wrote;

This is a very disturbing article using horrible language; 'monster', 'the end of safety, normality and reason', 'I have felt, at times, like killing Luke when he has hurt her.' There are no words of love or understanding for her son's needs and differences.

I have an autistic son. I have worked hard to understand his needs, his sensory preferences. Perhaps the boy destroyed the M&S coat as it felt horrible to him? Did this mum try to make things easier for him, for example, offer him a quiet room or headphones when his baby sister's crying was bothering his extra sensitive hearing? He is absolutely aware of she feels about him and it will no doubt have caused him so much stress.

Having an autistic child is tough and causes you to change your expectations of family life. Parents who adapt and accept this, and their children, are more likely to thrive.
Good luck to Luke in his new school. Be proud of yourself, and you'll find a community of people like you out there to embrace you.

There I ran out of characters.

But I did so want to say, '*edited bit. Go read a bit about your son's condition, learn from people who's brains are wired like his (NOT 'wired up wrongly in many ways'). Have you ever heard of the concept of diversity?
I managed to restrain myself, until now.


(PS, We're all going on holiday for a week from tomorrow. I will pack my children's favourite foods and toys, take familiar comfort objects and it WILL NOT be a nightmare!)

OK, breathe...feeling calm. Bye!

*I have edited this post to remove an personally insulting comment I had written.
Sharon

Engines, caterpillars and falling over

I was talking with Duncan about Lady's birthday. I said, 'Lady is 9 now.'

'NO! Lady not 9, Lady is 5!'

'Oh, and how old is Duncan?'
No answer

'Is Duncan 7?'

'No, Duncan is 6.'

'And what about Thomas, what age is he...what number is he?'

Thomas is 1. Daddy is 4 and Mummy is 2.'

Then I got it. Duncan has assigned his own Thomas the Tank Engine names to everyone in the family, and a few friends and extended family members too, and he prefers to use our engine numbers, not our ages. Here's his version;

• Lady - James (no. 5)
• Duncan - Percy (no. 6)
• Thomas - Thomas (no. 1)
• me - Edward (no. 2)
• Gordon - Gordon (no 4)
• Grandma - The Fat Controller (no number!)
• Granda - Henry (no. 3)
• G. (my step-mum) - Diesel 10
• M. (NAS befriender) - Oliver the Great Western Engine (no 11)
• C. (my sister) - Mavis

In fact, for any person I mention, he'll think for a while and then assign an engine or character name and he's always consistent in who's called what.

This summer, a fun fair has set up in our local town. One of the rides is a caterpillar roller coaster for children. Duncan remembered it from last year, and is fascinated by it. We have had to go down to the fair many times this year, on little pilgrimages so he can stand in awe watching this marvelous and slightly scary contraption. He asks me to 'go to see caterpillar train...sit on bench. Not ride! Just watch.'

So we go, and he delights in watching the thing, and the others run after pigeons or circle the fountain and we usually all get a ice-cream (a 99) to make it all worth while. Last week, he wanted to go a bit closer, so we went into the fair area and stood right beside the ride. After watching it go a few times, he decided he wanted to try it so on we went. He was a bit frightened and was softly saying 'stop, stop, get off, I don't want to die.' (The line about dieing is a quote from somewhere and he uses it to mean... I'm a bit worried.) I held him and told him it was safe, it's just a ride, we go round 3 times then it stops and we get off. By the end he was sort of getting used to it but we were both relieved when it was over. However as soon as he got off Lady and Thomas ran up to hug him and were all excited that he'd done it. I was telling them 'Duncan was a bit scared, caterpillar trains are a bit fast and scary' He corrected me saying, 'not scary, Duncan is happy.'

I don't think he'll want to go on again in a hurry, but he's pleased to have experienced it for himself just that once.

Right now, the boys are eating cookies that Duncan and I just baked. Lady is at summer scheme for the last time this summer. And I've just answered the door to some annoying man offering to clean the gutters and making fun of the cuts on my face; 'Did you fall over? Was there drink involved?'
Oh god how hilarious.

Oh yeah, I fell over, and there wasn't any ice involved this time. Yesterday evening I had to ask our neighbour about something and Lady came out after me leaving the front door open. So Duncan came out too and didn't want to go home. I played a bit, running after him and pretending to 'get' him. Then I managed to lead him indoors, and he asked to ring the door bell. I know he likes to do this sometimes on his way in, so I opened the front door again. But instead of ringing the bell he dashed off towards the gate. I ran after him; he stopped suddenly in front of me, and I just had too much momentum to stop myself in time. I ran into him and tripped up, crashing over him, bashing my face hard on the tarmac, ripping out the knee in my jeans and cutting my knee, and hurting poor little Duncan's side as he was trapped under me.

It all hurt a lot, and Duncan was so annoyed to see me bleeding. He said, 'Mummy no cut. Bleeding tomorrow. New skin will come.' He was kissing and fussing me, even though he'd been hurt himself. Anyway, the children were all so sweet and Lady told me to lie down and they tidied up. Gordon came home and doctored me, buying steri-strips to seal the still bleeding wound.

But flipin' 'eck, I'm not used to this pain. How do kids cope with all the cut knees and whatnot they get?