Autism - Seen today's Daily Mirror?

[jg3kids]

Hi all

you may be interested in this article. Nina talks about doing biomed with her twins. We are doing biomed too. Very interesting!

tinyurl.com/cz4tx3

j
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link doesnt work jg !

tinyurl.com/cz4tx3

Interesting article. I was surprised at the distinction they drew between "classic" autism, and the sort of environmental triggers ASD they felt was responsive to biomed. Is that a common distinction amongst biomed parents?

jg3kids - could you describe the biomed you're doing? I understand the idea but no-one ever seems to elaborate further than that!

Yes classic vs regressive autism is a fairly common distinction. There are arguments about numbers of cases of regressive vs classic, but not really about the existence of at least some cases of regressive.

Notplaying biomed varies hugely depending on the family. It can mean something as simple as giving vitamins or epsom salt baths right up to chelation. Huge numbers of other therapies inbetween. Things like the GFCF diet etc. In the UK Treating Autism is probably the place to start if you want info on biomed.

thanks mrsturnip, I was aware that there was a distinction (and in no way wish to dispute the existence of regressive), I was more that I was surprised that the distinction was so clearcut in terms of therapies iyswim.

Oh it's not really. I mean many paediatricians etc here are fairly anti biomed anyway and getting a dx of regressive autism is very difficult. A lot of the people who have good results from it seem to fall into the regressive category though which kind of makes sense if for example gut damage had contributed to a regression.

mrsturnip - thanks but as I said, I do understand what it means and I was asking what the OP specifically did

Hi All,

NPAM - haven't got much time tonight, but if you want to know more about what i'm doing with my son just ask away!

My son is just turned 4.
He had a difficult birth.
He was colicky and a very poor sleeper, thrashed about and refused to latch on to feed.
He had painkillers and also antibiotics (via my breastmilk) at birth
He reacted to dpt hib by crying for 20 straight hours. He had sore leg and crying again after 2nd dpthib.
He didn't have mmr
I first knew he had autism at 7 mos.
referred to paed at 10 mos, she gave us verbal dx at 16 mos but we didn't get official dx until the day after his 2nd birthday.
We tried gf/cf at 18 mos but didn't do it properly
at 20 mos we had his urine tested at sunderland. Paul shattock told us to remove gluten, casein, soy and corn.
We attended TA conference at 23 mos. Found a DAN! doc who was also a gp in London. We had stool, urine and blood tests done.
We found:
Extremely low vitamins (esp b/c and e)
Extremely low minerals (esp folinic acid/selenium and zinc)
Blood fatty acids low (all really really low)
bad bacteria in gut
fungal overgrowth in gut
parasites in gut
inflammation in gut or brain (only endoscopy or brain biopsy would confirm exactly where!)
evidence of massively high levels of metals in body.
We started him on SCDiet
We cleaned up all toxins we could control in environment (cleaning products, man made fabrics, water filter, wrapped his mattress, got rid of microwave, platic food containers -- very liberating!)
We started him on vitamins and minerals.
We give digestive enzymes to help break down food particles so this takes the pressure off the guts
we give fish oils (not just CLO for the A and D vits but also dha etc)
We give probiotics
We use a protocol to keep his bowels moving
we had food allergy to take out food that he's allergic to
We are about to start chelating (oral chelators)

I think i'm trying to show that we're not sure if he was asd from birth or if he was genetically predisposed to have inflammatory ot autoimmune conditions (which when you add vax to really can tip kids over edge.) In my family we have bowel disease, Rheumatoid arthiritis, epilepsy, heart disease...

Must dash

Jane

If you've been using the treatments on the list with your son between the age of 2 and 4, how do you know which of them are making the difference? How do you know the changes you may be seeing in him aren't due to his maturing rather than the treatment?

It does sound like a lot of intervention, so as you voiced concern about vaccinations overloading an already vulnerable system, are you similarly concerned that it is rather intensive for a period of only 2 years so early in his life?

The first thing which sprang to mind when you said "We cleaned up all toxins we could control in environment (cleaning products, man made fabrics, water filter, wrapped his mattress, got rid of microwave, platic food containers -- very liberating!)" was: how are you going to continue his treatment in general when he starts school?

I can you've been busy so thanks for your answers so far

The things which concern me about the original article are that:

1. the article doesn't specifically say that it was the NHS paediatrician who diagnosed them with autism in the first place

2. "I was told they were in a world of their own,? says Nina. ?I was warned they?d never speak, read or learn to socialise" - the article doesn't specifically that it was this paediatrcian being referred to here either

3. "Distraught, Nina was determined to get a second opinion. But the diagnosis was the same." - again, this article neglects to spcify where these diagnoses are coming from.

4. "But it wasn?t until the twins were reassessed by a private psychologist specialising in autism that Nina discovered quite what progress the twins had made.
   'They were no longer on the autistic spectrum,' says Nina. 'They were assessed again two weeks later, with the same conclusion.'" - yet again, the article doesn't reveal who this "private psychologist specialising in autism" is or what the assessments involved.
   Whoever, it is again this person isn't specifically linked to their mother's assertion that the twins "were no longer on the autistic spectrum".

These inconsistencies alone sound too far beyond simply the usual, journalistic style of writing and really set alarm bells ringing for me, which is presumably why the rest of the mainstream press aren't touching this story with a bargepole.

I'll look into it more later though.

completely agree with everthing Notplaying said, no medical professionals were mentioned in the article and only a small comment from NAS, if you look at the bottom of the article it gives details of the next treating autism conference so lazy journo plugging their agenda i feel and can i just say to chelation!!!

My DS2 has done extremely well on biomedical.
He was diagnosed by a specialst paed at St Thomas' ( via the NHS) and his huge improvements have been acknowledfed and reported by his state specialist ASD school.
His NHS GP is so convinced by hos improvements that unusually he is happy to prescribe GFCF foods for us.
He continues to meet criteria for an ASD diagnosis but interesting whilst we do gfcf and specific supplements to try and sort out his gut problems there are without any question at all, concurrent reduction is ASD behaviours.

And btw - have done this on my own with just some books ( although had nutritionist support recently) - so not plugging anything

It is often the case that concerns about autism causition speculation are not matched with the same level of concern about bombarding a child with unproven and untested 'remedies' for autism.

There was an article in 'Bella' or 'Take a Break' a while back about a diet of boiled eggs curing autism. I bought the magazine just to laugh at the story so I suppose it achieved its aim - selling the issue !

I think that when people are chasing a 'cure' then some can forget that what they are doing will impact their child.
Everything I have done has been on a 'one thing at a time and very very slowly' basis.
And the primary purpose has and always will be to stop him being in pain. Everything else that comes with it is a bonus. The ability for him to feel calmer and speak being the two most beneficial to him.

Its great that you have the support of members of the medical profession Pagwatch and i dont dispute that GFCF can be possitive for some ASD kids , what horrifies me is reporting of this kind that sends deperate parents running to "practioners" for a "cure" for their childs autism, to be offered "therapies" that have not
been proven to work.

What really worries me is the "they're not on the autism spectrum any more" stuff. Since autism is by its definition a lifelong thing, if they're not in it any more, I'd argue they never had it in the first place. Or that the intensive therapy they've had has taught them how to appear 'normal'. They attend a special school and are still having intensive speech and language therapy. Well, that by itself is quite enough to make a big change in how it looks to other people. Note the word "looks" (to other people), rather than "feels to us"

Hey, I can do that too - the thing where you seem 'normal' and can talk etc, but I'm still aspie as hell.

I'm not saying that biomed things have no value. Perhaps they do, and for some children the digestive things are a really big issue that definitely need help. But there's no proper scientific evidence to say that some of these techniques work better than other things/effectively in the ways described as far as I know. Some tiny groups, yes, but you'd need 'double blind' testing done for a vast number of children to come up with definitive answers.

Almost all of us make progress with or without therapies. It's difficult to say "oh yes, it was definitely the therapy that made the difference" when you only have one child in the household. No way to know what the outcome would have been had you not bothered, if you see what I mean.

Agreed Amber, if the twins in the article were 'cured' why were they still in a special school receiving intensive speech and language therapy? to think that autism is a cureable disease is doing our kids a real disservice and certainly doesn't help with getting people with ASD's accepted in society!!

actually amber I agree in that whilst I describe DS2 as having autism the fact that he was regressive and lost skills - and then regained skills- makes me question whether this bunch of kids actually have something which gives all the characteristics of ASD but has the dodgy gut component. And where crucially sympyoms ebb and flow according to dietary/biomediacal interventions IYSWIN.

I am always reluctant to say that as it sounds like I am in denial or something which I am not.
But whilst it absioloutely is aurism by any recognisable description I too find it odd that the very nature of DS2's autism changes when we change dietary things.That is not surely the nature of autism

rosie. I hear what you are saying and i personally know children who are effectively on a treadmill of therapies.
But I think it is important not to thrwo the baby out with the bath water. My DS2 is a happy boy at home with us with many many recovered skills and in considerably less pain than he used to be.His pain ,confusion and anger were dreadful things to witness. If we had not tried and had not looked outside what the NHS and the LEA had to offer back then - which frankly was less than useless - we probably would be visiting him on the weekends
I get really bothered when everyone looking at therapies is dismissed when actually if these effective therapies were embraced more and sneered at less then maube there could be some concensus on when and how to try. In order that children are spotted who may get physical and emotional gains can get that support - and those who don't need it or don't want it don't.

I started this stuff 8 years ago at a time when a dietician threatened to report me to SS if I took him off gluten. Things have improved but until the NHS have actually moved beyond 'he has autism. Take him home' they might be better served looking at where measurable improvement in these childrens quality of life is being seen.

Looking at jg's list - with the exception of chelation (and I do know an autistic child here in the UK who was chelated on the NHS- so yes it does happen, it's not inherently evil!) I have used all those things - vitmains/minerals, probiotics, digestive enzymes, & fish oils with all 3 of my children (including NT ds2 and ds3). All 3 of my children have at various times been gluten free. Both ds1 (autistic) and ds3 (NT) bang their head very hard on gluten.

There is a big difference between regressive forms of autism and AS in almost every area. Genetics, aetiology, prognosis, anything else you look at. Probably reinforces the need for more work on the different subgroups of autism.

I find Donna Williams one of the most sensible commentators on biomed. Good/essential for some; not for others.

I have a photo of my son's bruising that resulted from gluten. If you headbang concrete repeatedly you get left with large bruises.

pagwatch "I too find it odd that the very nature of DS2's autism changes when we change dietary things.That is not surely the nature of autism"

Depends what you think the primary problem in autism is. If you think sensory-perceptual - then for children whose sensory processing is affected by food (whether because of gut damage or something else) then it makes sense.

Donna Williams good to read around for this, but also Some of the DIR Floortime stuff- Greenspan talks a lot about sensory challenges and the effect biomed can have.

agree with amber's first para - that it's far more likely to be the removal of the DX bit that may be dodgy rather than the original DX. I'm open minded with regard to the dietary interventions - DS (language delay/social communication problems) used to have a weird milk and yoghurt addiction/intolerance problem - his bowels massively improved, and I feel his alertness sightly improved once I restricted both of these. Not completely cut out (unless he's got a stomach bug).

If I had not tried looking outside the NHS, DS almost certainly wouldn't have used PECs, which proved extremely helpful in getting him up from just about able to combine 2 words to him being able to produce reasonable length sentences - and PECs is hardly a controversial out there therapy. Just that locally signalong seems to be much the preferred AAC.

It's a really difficult debate to have with a lot of people, though, and I can appreciate that people will have very different views on it.

If we see autism as a terrible disease, then we're asking the public to be horrified, to shy away from contact with us, to treat us as if it may be catching. The social isolation we already endure gets worse, the quality of life for us gets worse. I know what it's like to meet someone who thinks that this is a dangerous disease of some kind - they invariably treat me like (fill in the rude word of your choice). It's absolutely awful

It doesn't mean we have to accept absolutely any behaviour from those on the Spectrum though. If a child is doing something very disruptive and destructive, it's often a cry for help, often from some sensory input that is totally overwhelming. Helping us to lead a life that's tolerable and enjoyable is great. But I worry a lot about these people that offer to 'cure' a child for a bargain price of tens of thousands of pounds etc. There simply isn't enough evidence to say it actually works any better than cost-free things the parent could try themselves. Note I'm not saying "there is no evidence any of this can possibly work". There's some, but not enough.

I don't buy the emotional blackmail stuff from some of the cure-peddlers about "if you loved your child enough, you'd do this for them' either. If we don't know the full effects, some of these families could be doing a great deal of harm to that child without even realising it.

I had a conversation with a parent who explained to me that their ASD child went absolutely wild when they took them unexpectedly to a noisy social event last thing in the evening when they were tired. They said this showed how important it was to cure autism, to stop this child from going wild. Er, well, if you take a child with an ASD unexpectedly to a noisy social event when they're exhausted, who'd be surprised that they go wild? The parent caused it. Yes, the child will scream and fight as surely as if that same parent said "Gosh, I pushed my child down the stairs and they screamed - so it's clear that we must stop them screaming and thrashing about by giving them therapies so they learn not to make a fuss any more"

Sensible tested therapies approved by the NAS etc, good training, low-stress environments, love and respect, consistency - those are all definitely valuable for a lot of us.

I completely respect what you are saying Pagwatch and understand completely you trying many things to improve your sons quality of life, but can yuou catagorically say that the biomedical route you have taken is responsible for your sons possitive development or could it be that his progress was a natural maturation and a result of his specialised education, sorry to sound as if i'm having a go as i don't know how else to phrase it, i am genuinely interseted

I completely respect what you are saying Pagwatch and understand completely you trying many things to improve your sons quality of life, but can yuou catagorically say that the biomedical route you have taken is responsible for your sons possitive development or could it be that his progress was a natural maturation and a result of his specialised education, sorry to sound as if i'm having a go as i don't know how else to phrase it, i am genuinely interseted

But Amber - neither does it mean that if a child has for example terrible bowel problems which make his sensory issue /asd symptoms more pronounced then we should not treat that because it would send the wrong signal to the public.
And doing biomedical does not mean that you ignore anything else. I am very sensitive to my sons comfort and peace of mind and i don't take him into situations that are stressful for him. I don't expect biomedical to replace my need to find out how to help DS2 be happy and enjoy his life. Why the assumption that parents doing biomed don't give any thought to their childs comfort and enviroment.

This thing should not be either or.