21 Sep 2007

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.

13 comments:

Ms. Clark said...

Her claims about this and that therapy, as if she has clue about the realities of the therapies, make me really upset. She's selling herself as an expert in areas where she plainly is not. Shame on her for being gullible and trapping others into nonsense like craniosacral therapy and other nonsense. She's just repeating what she's heard without knowing how to sift garbage from real science. ugh. I'm sure she's a perfectly nice person, but she's not an expert in medicine.

Patrick said...

Scary, Very Scary

Sounds like the lecture was more of a testimonial to me too.

^ Adds Donna to the list of folks (Temple got first placement) that might not really be looking for our best interests.

Though I am glad to hear you say that some good acceptance talk was proffered too.

christschool said...

Is it my imagination or do the orginizations that allow autistics (Donna Williams) and supposed autistics (Marty Murphy) to speak only want the "good autistics we agree with"? Everyone needs to make a living and we know its damn hard for autistic people to find open minded employers, but it would be nice if Donna could open the doors for someone with an opinion different than hers. Perhaps she has tried this, I don't know.

I don't blame Donna for being gullible, because I'm constantly surprised at how gullible I am. I've always had a difficult time understanding who were my friends and who weren't. I also have been known to have occassional bouts of mini Stockholm Syndrome. I don't think I'm alone in this as I recognize it in others as well, much to my chagrin.

Donna edited one of my comments on her blog once which I didn't appreciate (she said I misunderstood her post, but I don't think I did, she just hadn't thought about what she wrote).

While I'm happy Donna is able to find work that accomodates her abilities, I don't like a lot of her message. How can one on the one hand promote quackery for autistic children and on the other hand promote acceptance? Autistic children like all children deserve ethical medical advice and the biomedical she promotes is, in my opinion, unethical.

Sharon said...

Thanks for your comments.

I have to agree with you all. I was really disappointed in the heavy emphasis on biomedical 'therapies' in the lecture. It didn't always sit well with some of her other messages; especially that the difficulties an autistic person are not necessarily intrinsic, but due to environmental factors/lack of understanding and accommodation. The therapy option seems to be all about changing the person.

It's one thing to try various medicines and supplements when you're an autonomous adult, it's quite another thing to recommend them to parents of children, who may not be able to articulate how they feel and without proper medical supervision.

Christschool, you are right about the organisation responsible for bringing Donna to Belfast. They are a new group and want to spread the biomedical-autism message here. They would approve much more of the quackery aspect of the lecture but not with the acceptance aspects. Your last sentence is so true.

Estee Klar-Wolfond said...

I think that to discuss oneself is okay. But that self is right now, as many autism orgs like to present it, representative of many autistic people. As a representative, a person has to extend beyond oneSELF and consider the vast responsibilities of preaching something that may not be proven or even dangerous. An autistic person who preaches diets, vitamins or biomed without scientific evidence to support it, is walking a dangerous line which I do not support. Stating something that works for her -- something as an ADULT she made decisions about FOR HERSELF, should not be preached for others because parents run out and try goofy if not dangerous things. She might say it like this: "I am not recommending this for any of you, but as an adult, I found that x an y works for me -- or at least I feel it works for me. I am not a scientist and I cannot stand here and purport that it will work for you, but I am sharing with you what I've done for myself."

Donna has written many great books and her strength is her vision, her poetry, her relaying of her experiences. She is a wonderful writer. The world would benefit from her much more if she were to continue here. This is where she has given so much and it's a shame that the preaching of the other is taking that away.

Jon said...

thanks for the interesting post, and the link.

It's one thing to try various medicines and supplements when you're an autonomous adult, it's quite another thing to recommend them to parents of children, who may not be able to articulate how they feel and without proper medical supervision.

Absolutely. For example, Michael Ash (involved in the Nutrilink organisation) is speaking about autism in London today. Nutrilink offers advice on a huge range of biomed treatments [PDF]- and it's especially upsetting when this is targeted at children (e.g. advice on how to "Tip the child’s head face down and the capsules
will float to the back of the throat to swallow.")

Casdok said...

How disapointing

sensoryslp said...

It is too bad that Donna recommended such therapies. Especially in the area of autism, there are so many "therapies" that do not have any evidence base. It is especially dangerous when the speaker is seen as an expert in a specific field. People are more likely to take what she says at face value because of their respect for her as a person with autism.

Sharon said...

That's a good point Estee. Those who are seen as representative must be more aware of what they say.

Jon, that is horrible. I wonder how many people will fall for Mr Ash's spiel.

Casdok, yep it is. I did expect Donna to emphasise the needs of the autistic person far more than the need to alter their physiology.

Sensoryslp, thanks for commenting. Good luck with your blog. It's great to see professionals like you getting your views out.

Donna said...

Just to speak for myself
my diagnosis with primary immune deficiency was first done at a general hospital, then again via the GP, then lastly by an immunologist. My diagnosis with multiple food and chemical allergies was done via a GP referal to an allergy specialist clinic run by qualified doctors. My diagnosis with functional B12 deficiency was done via a general hospital. My diagnosis for gluten intolerance was via a urine analysis for undigested proteins, done by Paul Shattock, a pharmacologist with 20 years of study on this, he used as standard used in hospital testing. My diagnosis of salicylate and phenol intolerance ws done by three independent allergy clinics, two of which were run by medically qualified allergy specialists, the third by a naturopath. I also said at the Belfast lecture, as I do at ALL, that not all people with autism have these medical issues.

Donna said...

to further speak for myself, I am very clear at all my lectures that I am against ALL one size fits all approaches and ALWAYS say that I am only one case in an ocean of very different cases of people diagnosed with autism.

I do mention at all times that I do not believe medication should be a first stop and set out the many sensory-perceptual, communication, social, emotional, learning environment alterations as well as addressing health issues BEFORE bringing in medication so as to avoid reliance on more medication than would otherwise be required AND that neuroleptic medication is only by those with SIGNIFICANT mood, anxiety and compulsive disorders AND that NOT ALL PEOPLE WITH AUTISM have these.

I do say that Cranio-sacral therapy has helped me, as have tinted lenses and brain gym, but I do not say this applies to ALL people with autism. I am aware that Autism Research Internation did a study re cranio and found around 60% of respondent's said it helped their autistic child. I am always clear this means that with 40% it did not apply to them.

I put a strong emphasis on why physical issues do not underpin all issues in autism nor with all people.

Anyone who has read The Jumbled Jigsaw or Autism; An Inside Out Approach will know this.

And as for fluoride poisoning from eating toothpaste, its published in PUB MED. Several children each year are hospitalised for it and a small number die each year from ingesting it. Toothpaste is not recommended for infants under 2 for that reason. Unfortunately, those with autistic kids don't realise that when those kids eat it, they are in the same dangers as these 2 year olds. If 6 parents in each audience of 200-300 people raise their hand to their child eating fluoride toothpaste, then thats 6 children whose gut lining may not continue to be corroded (its in Pub Med, go look it up) from the effect. Kids with autism don't need these extra burdens.

As for whether I represent all autistic people, I have begun my talks for years emphasising that I draw upon my own examples and those of some of the 600 children and adults with autism I have worked with in 12 years as an autism consultant through social services, the education dept, and privately.

I generally pay my own international flights to most of my overseas lectures and my lecture fee is fairly moderate and goes towards paying for those flights. My lecture fee, for example is around 1/4 or less of that known to be charged by Tony Attwood and I expect significantly lower than that charged by Temple Grandin. It is such because I choose it to be affordable and because it generally allows those who come to my lectures to also do so affordably.

Donna said...

In my Belfast talk I talked about personality and motivation and distress patterns, about learning styles, particularly in those with visual and verbal agnosia (making visual-verbal learning less possible), about learned dependency and identification with one's disabilities, about autistic responses as comprehensible responses and what they can teach people, about environmental strategies for reducing sensory perceptual and cognitive information processing challenges, about typed communication and which types of challenges it might reduce for some people etc. Unfortunately, because I ALSO talk about physiological issues in the general MIX of things that CAN be addressed in THOSE THEY APPLY TO, those who haven't found that component useful to them seem to have missed that 3/4s of the rest of the lecture didn't talk about physiology at all. Such is life.

Sharon said...

Donna, thank you for speaking for yourself.

As I wrote on my original post 'I do not intend to dispute what she says about her own health and medication'.
And yes you do say that there is a wide range of autistic people and experiences and skills and difficulties. However, I didn't hear you make this point explicit when you later discuss the medical issues. It appeared that you were implying that many or most autistic people do have these issues, which you have continued in your comments here, when you wrote,
"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 don't agree with these numbers. As I wrote before, have these all been verified and reproduced by other studies? And what hypotheses have they presented to account for these manifestations in the physiology of autistic children? The same goes for the study you mention which supposedly proves that cranial sacral therapy helps 60% or respondents. Were these all surveys? How were these figures achieved?

In comment, you said,
'I do mention at all times that I do not believe medication should be a first stop and set out the many sensory-perceptual, communication, social, emotional, learning environment alterations as well as addressing health issues BEFORE bringing in medication so as to avoid reliance on more medication than would otherwise be required AND that neuroleptic medication is only by those with SIGNIFICANT mood, anxiety and compulsive disorders AND that NOT ALL PEOPLE WITH AUTISM have these.'

I took notes during the lecture, and I listened carefully when you started to mention respiradol. You merely described how it helped you so much, and how in many other cases you know of, the medication had huge benefits. I still stand by what I wrote in my post about the lecture;
'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.'

In your last comment, when write that;
'Unfortunately, because I ALSO talk about physiological issues in the general MIX of things that CAN be addressed in THOSE THEY APPLY TO, those who haven't found that component useful to them seem to have missed that 3/4s of the rest of the lecture didn't talk about physiology at all. Such is life.'

25% of a 3 hour lecture is a lot of time given over to unproven biomedical approaches. In the final question session, one mum asked your advice on her teenage son, who was complaining of pains in his neck and shoulders. You mentioned diet, massage, pointed out that one of the other audience members was a massage therapist who also deals in Bach flower remedies. I was surprised you didn't advice that her son saw a doctor to rule out more serious causes of pain.

And you appear to have missed the portion of my post in which I wrote,
'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.'
and
'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.'

I did not miss 3/4 of the lecture. They were the best bits.