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
x

PEC's got ds3 talking but in some ways that has caused issues itself(long story, ds4 now gets very distressed regualrly because of what appears to be the start ovf extremely upsetting for him SPD type stuff: SALT gone on sick for forseeable future since last month apparently).

GFCF is everything for ds1 and beyond the levelof dietary bnecessity in CF not much for ds3. DS3 is the regressive one. But ds1 gets so upset by his gfcf diet that it often lapses: the aggression it prevents is often made up by aggression resulting fromanger at the diet if that makes sense? It's complex.

I do get worried about a search for a cure; I cn understand it (who wouldn't?) but i think there's a massive difference between mitigating stuff and expecting a miracle. It'snot abouit optimism / pessimism (as I have beena ccused) but about dealing with what is actually on your platre and finding the positives therein rather than living in denial.

I am a big believer in ASD dx misdiagnosis: give me a pint of milk and you would see me quite markedly ASD, i coudnt talk to you ot communicate, will rock on the sofa feeling as if I have drunk 6 pints. It's horrid: the classic behind the glass window thing. But removing milk sorts 90% of that (residual AS? probably but am too old to deal with). But that'snot the same as curing ASD, just tackling a problem you were give the wrong name for.

Sam has vitamins etc (chelation not for us, there's a crossover in any therapy choice where things would cost more in terms of time etc than they might solve- we call this the BIBIC phenomenon - its individil to every family where that cut off is). But I am coming to the idea at 9 that we are doing the best we can and whilst I thought we were missing something for a long time now I beleive the reverse: that we have possibly defended him against the worst effects of what culd maybe have been more severe asd by the biomeds.

Harry- ah now, DH and don't do somuch there. harry is happy you see. So he ahs SALT and CF etc and has toeat a good diet but- I won't do anything that upsets him(pills etc do). he won't be independent and thats whatever in my opinion so happy is where we aim at.

I know what you mean Peachy - atm DS is coping well in school and his language is coming on - so I'm not going down the Sunderland testing route, just restricting "trigger" foods, but if things go less well then I'ld seriously look into GFCF.

yes, i think its abalancing game isn't it?

you have to be honest what you're aiming for and if you'vealready got that (and a happ little boy is pretty goodafter all) its gret to acknowledge that.

We're probably lucky in that as I am cf that was introducedearly on with the 3 who need it, just a fluke.

Hi all,

Sorry not been around to respond as and when (if anyone's interested that is!!) Dd2 is not very well. But the posts are very interesting reading. I think it's great that such a clever passionate bunch of people can have such a friendly open debate without it descending into slagging off (I've seen it happen in loads of other boards)

Couple of things.
Yes, we have done all this over 2 years (just over 2 years) with 3 weeks between adding each new vitamin/mineral. I was careful to watch for any kind of adverse reaction. Nothing we've done could be considered dangerous (even chelation - if done properly is o.k -- you can go to your local Holland and Barrett and get ALA, it's sold as an antioxidant. Garlic and chlorella are said to be chelators too, I think chelation has been given a bad press)

If a biomed therapy has scientific approval at national level, then fair enough.... have a look at Dr Alex Richardson "They are what you feed them" she cites peer reviewed studies for vit therapy, fish oils etc.

Amber said 'All I can do is try to explain the hell for us as people with an ASD to live in a world where this is seen as a disease that needs curing'. I'm with you on that amber. You just have to see how people have been over the cbeebies presenter to know there are some dangerous hate filled people out there. I love my son more than anything. I don't have a problem with his autism, but I think I may have mentioned that my dd has bowel disease? This started me thinking about why my ds had such terrible diarrhoea and constipation (that the gp dismissed as 'it's just his autism') This led me onto diets and from there to testing for peptides, vitamin deficiencies, leaky gut, gut dysbiosis etc. I'm really glad I did follow this path cos he's waaaay better physically than he ever was. Does he still have autism? yes. Is that ok? yes.

I cannot say categorically what if anything has helped, but 4 days after clearing out allergenic foods, he potty trained himself dry and clean, day and night -- in 4 days!

We also have tailored our lives to make things easier for ds. We lead a much quieter, hectic life than we did and we're all happier for it!

off to do nursery run now. Catch up later

x

Hi There
I am new to this list, am mum to Rebecca who has Autism and is now 11. She has come so far using Biomed. I know Nina who the article was about. Her children were properly diagnosed with ASD by mainstream medics, and now they no longer meet the criteria for Autism, has come from Autism specialists too. My daughter had severe bowel issues which we have treated (are still treating) using targeted supplements, anti inflammatory medication and the Specific Carbohydrate diet. She didnt speak until she was 6 and has only just come out of nappies in the past 2 months! Its fantastic.... The Conference by Treating Autism next week in Bournemouth is really worth attendng for any parents interested in these treatments. www.treatingautism.co.uk will provide you with more info. Good Luck with all your children. I look forward to learning lots on this forum.

Ds1 has never shown any intolerance to food with the exception of tomatoes when he was a baby, which brought him out in a rash. But as they're acidic I'd hazard a guess that's quite common for infants. Ds2 also came out with a rash with tomatoes as a baby but is fine now. He's mostly ok with food, with the minor exception that if he has a bad cough or cold and is quite phlegmy, milk seems to make it worse and if he drinks any when he's ill he's liable to throw it back up again. Other than that milk (and any other dairy products) and other food is fine for him to have. Neither lad have any addictions to particular food types, they have their favourites, but will not try to eat mounds of them.

Is there not a possibility that the twins had developmental problems due to prematurity? Whether a child has ASD, GDD or whatever kind of delay, the symptoms have many cross overs. What criteria do they meet now to allow them a place in special education ? There are many children dxd ASD by today's criteria who are in mainstream, and in some cases, ahead of their peers academically. I'm not trying to be confrontational, but there still seem to be many more questions than answers. If you make a worst case scenario prognosis for every ASD child at 2 years ( child will never speak, will never be out of nappies) then it is no great surprise to find many children who surpass those expectations. I could have said 'Oh I would like DS1 to be speaking in full sentences by 4 years' and if he'd been on a diet or vitamins, I could then have said ' Oh dear, still only 2-3 word phrases at 4 years, this is not working' Is that not just as logical?

Amber the paragraph is meant to show the range that autism encompasses- from those who cannot speak to those who speak but have other problems with language.

The bit about the non speakers is meant to be representing the severe end of the spectrum- telling people about the severe end of the spectrum. Giving a snapshot of the range of difficulties with speech and language. To construct it such that people at the severe end of the spectrum are choosing not to speak is just wrong.

I think the assumption that all children with autism are visual learners is problematic. Some research evidence now showing that those who are the most severely affected actually live in a world dominated by sound. Sometimes they will still respond to visual aids because they stay static in a confusing world.

PECS was useful to my son I have to admit, but like anything it needs to be tailored to the individual child. For many children with emerging speech it does aid speech (as does sign). Ignoring a verbal request to insist on a PECS exchange is an example of a SALT misunderstanding the research though (and of course a loss of all common sense).

DS1 will now use anything to get his point across now, PECS, sign, - he tries with speech - although I rarely understand what he is saying- pictures, reference object, dragging me, pointing.

silverfrog- just read your post about your dd not engaging at school. Absolutely. It's a real shame that so much in autism is taken from a top (mind) down approach rather than considering the sensory-perceptual and motor planning/initiation problems individuals on the spectrum have. Especially those at the severe end.

mrsturnip, sorry, I am struggling hugely with this discussion now and really should just stop...but I'm still not sure what you mean.

You say, "The bit about the non speakers is meant to be representing the severe end of the spectrum- telling people about the severe end of the spectrum"

But it's on the general autism (rather than Asperger syndrome) page. It's not specifically about severe autism as far as I can see. There are many individuals with HFA who prefer not to speak.

Whole page is here www.autism.org.uk/autism

Actually I was intrigued by that MrsT- I think there are other parts f ASD that cn be severe other than speaking: someone non verbal can be very functional in some ways and the revcerse is true. It's the composite that defines the severity in RL IYSWIM.

The sentence says:

"Some people with autism may not speak, or have fairly limited speech. They will usually understand what other people say to them, but prefer to use alternative means of communication themselves, such as sign language or visual symbols."

The 'they will usually understand what other people say to them etc etc' is referring to the 'some people with autism' who 'may not speak'. It is not referring to the entire autism spectrum, it is referring to the non-verbal and those with very limited verbal ability. And it is wrong. It is presenting being non-verbal as a choice.

Peachy I'm well aware that severity is a composite, but if you spend time in a class with 6 boys just like the child in A Real Boy you find that its a very different scenario to HFA. People who are non-verbal with big language problems (ie most) are not usually very functional. They may be very passive so as young children very easy to take along to things, but they are not functional. Most of the group I am talking about cannot be scored via IQ tests (they can't do them), they have very poor self help skills, usually severe learning disabilities. They cannot take part in research and so have almost no voice.

Even those like Tito and Lucy Blackman who have developed language and can write very well cannot live independently. And their amazing abilities are incredibly rare and found with other problems so severe that mean they need massive amounts of help.

Young children who are non-verbal who go onto develop language by around age 5 are entirely different to those who remain non-verbal to an older age.

Nope, tried everything but I can't read it the way you are, Mrs T.

I'm mindful of books like "Autism and God" which isn't as religious as it sounds, but looks at the ways that many very autistic people actually have much better yet different intelligence than people realise, We may miss a language of gesture and behaviour almost entirely, mistaking it for obsession or otherwise. If a child wanted to communicate with music, how many of them have that chance to learn that language? If a child's brain was wired up to communicate in colours, do we allow that to happen in a way we could translate?

We've lived in a world where we've almost totally denied the intelligence and 'awareness' of animals/birds like parrots, dolphins, dogs etc. We're learning that we were looking at completely the wrong tests for it.

I've lost count of how many people with Asperger syndrome/HFA I know who have very poor self-help skills too, so that's not a defining factor.

Some with autism have a very low IQ, but is that a defining factor of autism, or could we say that in the general population there are also people with a very low IQ so this is coincidence, and that the low level of self-help etc is sometimes a result of the low IQ rather than the autism?

Much more clarification needs to happen from the scientists, I think. Much much more.

But in severe autism the learning difficulties usually come from the autism itself. And for most people who are severely affected there's nothing regular going on. Their sensory perceptual problems are so profound that it's not a case that they're processing something differently but smoothly, it;s a challenge to process anything at all.

There was a paper published last year (Bonneh et al) with reported on experiments carried out with Tito. These were hugely difficult to do - even with someone with as much receptive language as Tito - there's a description in the book Strange Son. It showed that Tito has huge perceptual processing problems. He basically can't see and hear at the same time, so every time he hears a sound his vision essentially cuts out. Any sound. He is living in a totally fragmented world. The vast majority of those with severe autism will have perceptual problems of a similar nature or severity but cannot be investigated because there's no means of doing it.

This is a group that is not being studied because it is too difficult to work with them. I attended a conference of 1000 autism researchers. There were 2 of us presenting posters on severe autism, and there was 1 paper presented on children with severe autism. That was it. I've recently carried out a search - can't remember the exact figures but it was something like 1700 ish papers publish on autism in 2007 (ie 1 year). 34 papers addressing severe autism in the last 10 years.

There's a massive lack of understanding of the amount of involuntary behaviour that goes on in severe autism. Compulsions and involuntary behaviours are treated as equivalent to obsessions for example - doing great disservice. I was lucky enough to discuss this point with Donna Williams who pointed out to me that involuntary behaviours could eat up my sons life bit by bit if we didn't get a handle on them, so to some extent we did and he is now learning to exercise some control himself.

but even someone as able as Lucy Blackman has written about walking past McD's and having to type to her PA 'don't let me force you into McD's' at the same time as she pushed her PA in. She then goes onto discuss how she was beginning to understand how difficult it is to break these involuntary behaviours. This is something I would guess features heavily in the lives of many who are severely affected, but is barely recognised.

Oh.

Hadn't realised it was you.

OK, so now I look like a total idiot. But I really can't see what you're seeing in that text. Probably really is an ASD thing.

Sorry I keep changing my name

I've just found something that Donna Williams sent to her email list a while back and will copy it below. I know I keep going on about her but I think she's very good at separating out culture/condition when biomed is needed/when its a problem etc- really seeing the mix (or fruit salad I guess as she calls it) in everyone on the spectrum.

When she sent this I was really quite blown away by it as I thought it was spot on and it does reflect what I see in the kids I work with, especially those who have remained non-verbal or at a single word level of language. I have asked her permission before to reproduce this and I think its fine providing its credited to her:

Adam Feinstein wrote:
Hi Donna,

I've just been asked by someone in France whether there is a fundamental difference between a non-verbal individual with autism who appears to be cut off from the world and a higher-functioning autistic person who is able to write articulately about his or her experiences. What is your view on this?

Hi Adam,

the question is a useful one so I'm sending my answer out to my mailing list.

non-verbal can mean infant depression with acute social anxiety and selective mutism
it can mean brain starvation and toxicity due to gut/immune/metabolic disorders
it can mean dominated with mood, anxiety, compulsive disorders till everything is too chaotic to dare build bridges through communication
it can mean lack of simultaneous processing of self and other together with oral dyspraxia
it can mean someone meaning deaf, perhaps also meaning blind who has been unable YET to learn the one word-one meaning system.

If a high functioning person has NEVER been ANY of these things, then they are psychologically, cognitively, perceptually very different
to a high functioning person who HAS once been AT LEAST SOME these things during a conscious phase of childhood (ie AFTER the age of 5)

If a high functioning person outgrew such stages before the age of 5, I wouldn't feel they had the neurological development to retain a comprehensive and cohesive memory about daily life, perception and functioning to really convey that stage in anything but glimpses.

On this basis, anyone diagnosed as a psychotic or autistic infant who was functionally non-verbal and lacked simultaneous processing of self and other, WHO OUTGREW SUCH EXPERIENCED BY AGE 3-5 will not really understand what it is to take for granted that this state is simply one's daily life as a GROWN person.

For example, I came to understand the one word-one meaning system at age 9-11.
Before this I was largely meaning deaf.
I came to hold a simultaneous sense of self and other for 45 mins, long enough to become consciously aware of this process, at age 30 (I had had moment, minutes of it previously, but not enough to become consciously aware of it enough to grasp it as a system or something to seek).
At age 9-11 one is relatively a GROWN PERSON, at age 30 one is certainly a GROWN PERSON
but at age 3 or 5 one is still a DEVELOPING PERSON so one lets go of the earlier phases.
At age 9-11 that is much harder because it is just 'what life is', 'what being a person is'.

I'm now someone who can speak fluently. But there's much of me finds this a foreign system, foreign language, and its tiring. I'm far more about BEING and DOING.
This is perhaps because I came to understand language quite late (had a massive stored repertoire of stored strings before this) or it could be the other way around, that I was late to develop functional speech because the semantic-pragmatic system was not my natural neurological strength.

Just because I can learn to do handstands doesn't mean I was designed to walk on my hands.

So I don't actually relate to those who outgrew these things by age 3 or 4.
Even though I may be in the same HFA group as them now.

Being 'feral' until such a late age changed me in fundamental ways, neurologically I'm more rusty than earlier developers, my batteries go flat quicker, my natural instincts work in other ways, my soul is geared for a more animalistic style of processing and responding and it takes more to consciously try and dominate that in order to survive in the non-autistic world.

I also think that most people with Asperger's can't grasp the world of meaning deafness, meaning blindness and a time when there was NO concept of simultaneous self and other.
Some people with HFA can (generally those who developed communication late childhood-puberty) but most if not all of the verbal HFA people I've met either began in the HFA range or outgrew all but their BEHAVIOURS by age 4.

Autism is not BEHAVIOURS
One can become attached to behaviours long after their cause or necessity has passed.
And one can dump behaviours even when the causes persist.

Some in the HFA range don't GET THIS
but in my world the issue is the perceptual and cognitive challenges
playing on behaviours is circus stunts.

pardon my vulgarity, but I'm logical and practical and I'm almost 45
and I think circus stunts and parading, cloud the gaining of understanding in the field.

Autism has become trendy, like dolphins and unicorns, and I think we need to distinguish identity/culture politics from the realities of the condition.
The cultural phenomenon is real and often useful to those who gain emotionally and socially from it.
But it is NOT where many families of severely challenged kids with autism are living and as a consultant I see this ALL THE TIME.

Yes, it IS a spectrum
Yes, there are different autism 'fruit salads'
But if verbal people are going to proclaim to have extensive experience of the perceptual and cognitive realities of functionally non-verbal people
then this is more than a bunch of flag waving of behaviours.

I ama ware of differences MrsT, as well as nursing peoplewith the severest ASD in my youth I do have a child with very limited and recent speech also.

I guess my point really is that when peopletalk about the klost severe people who do not understand ASD and its variants assume the other end of the scale is very milkd, for many children it simply isn't. To be robbed of your independence or to suffer bullying and nt be able to defend yourself can't really be described as mild.I have no issues with the concept ofvery severe asd as its plainly there and existent but I dofind myself constantly frustrated by eing told about mild ASD, or that as is automatially milkd when we all know life is so much mroe comlpex.That ds1 can't have support because he doesn't qualify even though his behaviours affect our lives more than children I know whose parents are annoyed by SS banging on their doors for an annual review that is not required.

When we can knock down those labels (all hailto DSM V) and look at how an individual presents I will be relieved.

Amintrigued with that thing by Donna Willaims as Harry is supposedly HFA but stillminimally vcerbal,maybe he is the rearest of people,who knows?

OK as you're all here I am going to ask a question see if anyone can explain it.

Sam'sspeech very great at a ridiculously young age thought in dx he was only entitled to one assessment where SALT flagged up concerns over massive SPD but couldn't follow them up (they never last mre than a fewmontsh round here).

lately at school he only communicates (or almost only) in very limited forms- lots of piggy and cheesy and uh-uh. And thats about it really. Obviously its a huge problem and nobody knows why or anything. Clearly its ot the same as child who didnt ever talk and at home he takls (in that manner of AS which is all very superficial- no self awareness,no depth IYKWIM- cnt explain actions etc ).

?????????????????

The NAS does need to acknowledge that there are those on the spectrum with severe udnerstanding difficulties and.or difficulties with movement and processing which severely impairs their ability to communicate and, in this quoted parapgraph at least, they do not appear to be acknowledging them.
One thing I will disagree with is the following quote from Donna Williams:
"I also think that most people with Asperger's can't grasp the world of meaning deafness, meaning blindness and a time when there was NO concept of simultaneous self and other."

I am a very high functioning woman with Aspergers and yet it is very difficult for me to either:

1: Take into account or be aware of what others are doing unless it is specifically pointed out to me or I am actively looking for it and unless it relates to my children and sometimes my DH I will very rarely actively look for it. When I go to collect Ds2 from playgroup I do not think about the other mums and feel anxious about fitting in, I automatically start counting the letters on a notice board or looking at marks on a leaf. I see the other parents but I do not acknowledge them. Until they make themselves known, if I am not actively deciding to approach them (and it is not easy for me to always realise I should be approaching someone) then they do not enter into my thoughts. To give a couple of specific examples:

i: When I was 13 I had a toilet related accident whilst I was in the circle with other guides singing the goodbye songs. I was not hidden in any way and most people would have noticed. One of the guiders approached me when the songs were finished and everyone was leaving and asked if I was ok. I was extremely puzzled by this, it did not occur to me until it was pointed out that the guider and others were aware of what I had done. It is not that I thought I had had escaped detection, it was that I did not think at all of the other people's perspectives.

ii: Last year myself, DH and the lads went to a medieval fair and I got a bit lost trying to get back to DH at one point. At the time it did not occur to me to approach someone and ask for directions. I was aware I needed to get back o ntrack, I was not aware others could help me do so. It wasn't until weeks later I realised in hindsight what I could have done.

I have very little contact with my sisters partly through estrangement and partly because I do not often think about them or what they are doing, a literal case of "out of sight, out of mind".

The other thing is that I find it difficult (and this is very hard to explain so please bear with me) to think of myself as a unique being. I know I am, of course, but I have grteat difficulty in thinking of myself in terms of me being "me", as opposed to someone I just think about. I'm not explaining myself well here, I know.

Whilst it would be wrong for me to claim that I have exactly the same level of perceptual and sensory things as someone who is severely autistic, it is also wrong to say that I do not experience them on any level.

It took me until my 20s to learn enough self-care to be socially acceptable, Bullet123, so I know what you mean. It just never occurred to me that others would or could have a view of me or need me to 'be' a certain way, because I didn't really have a strong sense of myself. I didn't see the need to bath or wash my hair, also because those were really unpleasant things to be avoided at all costs unless the shouting from parents overrode the fear of the water/smells of scents.

I've just been to the shops to see if I can get some perspective. Shop 1 - a flickering display in the windows. Couldn't manage it. Shop 2, huge display of items, couldn't pick one - had to leave. Shop 3, lady asked me something I didn't know how to answer and I ended up feeling completely panicked. Abandoned trying to go in the other two shops even though I know there's things I need. Can't do it. And of course because I'm so supposedly high-functioning and mild and not needing of any label or support there's no support provided, no help, nothing.

Without my dh at the moment, life is even more scary than it was

Just small snapshots of life, but I now really really want to be under my desk where it's safe, and I can't because at some stage I realised you can't actually do that as people want to communicate with you to find out what's wrong and that's even worse.

And I've tried all sorts of exclusions and additions over the years - wheat, milk, vitamins, etc etc and it's not made one jot of difference to me, so I'm guessing there's ASDs that aren't related in any way to nutritional problems.

Amber (breaking my own prohibition on the thread already LOL)- when is your DH coming out of hospital?Do you know yet?

Peachy I'm not making any assumptions about the other end of the spectrum. I don't need to - the HFA/AS end of spectrum is very well represented in the literature. 1700 + papers in 2007 versus 34 on severe autism in 10 years. One paper AFAIK on sensory perceptual processing in severe autism - ever. When this processing is fundamental to the condition.

When I say "different" I mean in terms that Donna Williams talks about. Although I completely take on board your point bullet and I think that our conversations over the years on here have really helped me understand the problems- it does sounds as if you share many of those difficulties.

FWIW I don't assess severity by speech. I use CARS. It's not perfect, it categorises people and its a bit crude but I find that the people scored as severe on CARS tend to have the sensory perceptual problems that characterise severe rather than HFA. It works for me.

I also think there's a fundamental difference between people functioning with language and without. You experience the world differently- feral and animalistic are the words that Donna Williams uses and I think they describe my son very well. They prevent access to so many things as well for him. Because he is living his life without concious thought or at least without thought in language.

I don't think the NAS represents these differences. I don't think they even understand them in the whole. I don't think many do without lots of hands on experience.

"Understanding".
I would still give the appearance of selective mutism and social anxiety, though as stated in the preceding post this is primarily down to me usually at the time not realising to talk to other people. There is a fair degree of sensory stuff going on as well, probably, the smaller the group and quieter the environment the easier it is for me to think about other people. And alcohol does the job as well to some extent, in that my difficulties getting the words out and reacting to things may lessen, though not all the time and obviously I can't get drunk all the time.

Peachy, he's out of hospital, but can only be active a couple of hours a day and we've always been a 'matched pair' - good at things the other isn't. It feels like half of me is missing

Am really going now as being told this is what the research say feels like being told thst someone who never met my child but some who ahve certin things in common knws more about his needs than me. I am certain nobody mean that and I am being sensitive to an issue trhat has upset me before, so will take a break from this thread.

I am sure we all agree (hope) that all peoplewith a diagnosis of any disability should be assessed and suported according to their individualneed rather than any textbooks; soe with perceived milder conditions need more help and some with more severe function incredibly well (not asd specific- I eman peopelike those with DS who marry and get jobs). That's the best way forwards for all i think, the fairest.