26 Sept 2007

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.


Anonymous said...

Issues like eczema and diarrhoea should be treated separately and the appropriate treatment given. I know that diarrhoea in very young children, whether on or off the spectrum is very common and is actually referred to as toddler diarrhoea. Obviously older children can get diarrhoea as well and again appropriate treatment should be taken. But it won't determine whether a person is on the autistic spectrum or not, all it will do is ensure a child does not have diarrhoea.

Sharon McDaid said...

Exactly Bullet! I don't know why these issues have been linked to autism so much.

Patrick said...

Whew, I thought your last installment was damning. This one (Karen Buchanan) absolutely reeks, in my opinion.

"Wing's now passé..." Oh, these folks think they have done something better than Lorna at least bringing it to light in the English Language?

Karen obviously hasn't been following Canada's struggle since she left (for what reson?, to get Choice in treatments?) and I think Michelle would tend to disagree that they have been celebrating the individual, at least for the Autistic folks.

I better quit thinking about this, I think Orac would agree.... The Stupid.... It Hurts!

Unknown 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 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 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 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.

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.

... Donna Williams *)

John Best said...

Sharon, If you listen to what Karen Buchanan has to say, your child could benefit. When it comes to autism, she is probably the most knowledgeable person in Northern Ireland.