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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Pagwatch, if you look at my email, the last thing I said was,

"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. "

If a biomed therapy has scientific approval at national level, then fair enough. That would make it a sensible tested therapy.

I'm not suggesting that a child with bowel problems should be left to have bowel problems? And I'm not assuming that parents doing biomed don't give thought to the child's comfort. I'm suggesting that some (not all) of the cure-peddlers are peddling cures that are unproven and just may be unsafe, scientifically speaking. And very, very expensive, too.

In my son's case. Gluten = headbanging concrete No gluten = no headbanging, or if he does headbang it hurts. This has happened repeatedly over the last 7 years when he first went gluten free.

If you're so wound up you're headbutting the floor 20-30 times a day you're not going to learn anything no matter how wonderful the education.

Lots of cheap/free therapies advocate trying biomed as well. I would agree there's a problem with the cure message, but most people mellow on that after a while anyway. It's part of coming to terms with the diagnosis. Most people don't spend 10's to thouands of pounds and that is the advantage of people like Treating Autism or Allergy induced Autism. Or the ARI. They share information for free.

The one most effective thing my son has been taught so far was to learn imitation. He was taught using ABA and he did not learn it until he was 7. It has had a profoundly positive affect on his life (it has allowed him to go surfing and climbing for example, as well as increased his sense of self and understanding of his relationship with his brothers), and I don't believe he would ever have just picked it up because I observed the process by which he learned. We have never run a full time ABA programme we did a bit after school each day based on play - we now don't do ABA. But many of the anti-biomed are anti ABA (or any other therapy) as well. I think there are some problems with ABA and with some of the rhetoric that goes with ABA programmes- but as a teaching technique - it works - even when children are severely autistic, non verbal and with no imitation skills. There's not much choice out there when you have to learn everything hand over hand!

The problem with researching therapies such as biomed at the moment is there is no reliable way to identify autism sub categories. Which makes it hard. Because given the many routes to autism different children are likely to respond to different protocols (or not at all).

As a parent I'm not going to watch my son whack his head against concrete until someone proves that gluten works. I know it does - for him.

I know Amber I saw that.And I am very interested by your contribuition here so I hope I am not sounding argumentative - it is such an important and tricky issue....

But if I had only done sensible approved therapies then my son would still be in a great deal of pain. And biomedical is too closely tied with issues that are hugely contravertial ( like vaccination and over use of anti-biotics) for their merits to be properaly investigated by a very slow moving establishment. My GP for example is prepared to prescribe GFCF foods for DS2 but many many will not as that is not accepted as appropriate for ASD even when the effects of gluten on that particular child are recognised and substantial.

And tbh anything where people want to change/alter/treat will always attract cure-peddlars whether it be breast enhancement, cancer, memory loss or erectile disfunction. That does not mean that everyone is on the make. And I had only paid for some books and membership to a couple of webites until this year.
Its the baby with the bathwater thing....

I don't like the knee jerk reaction that people looking at therapies are ALWAYS looking to ignore the needs of their child in the search for a cure. Some maybe- I have no doubt that that is true- butI think most just want their child to be happier and more comfortable.

TBH when I've read things written by people like my son who can type (Lucy Blackman/Tito) they're pretty clear that their autism can be an utter PITA. And Lucy Blackman talks about how things like allergies affect her autism and how it's a biological condition. I won't paraphrase because its a long time since I've read her book and I don't want to say she says something she didn't.

I once made the mistake of saying to my son 'oh it would be so much easier if you could talk' (he was about 7 at the time, I really did not understand what he was trying very hard to tell me) and he howled and howled and tears poured down his face for about an hour. He cerainly doesn't prefer not to talk (in the words of the NAS)

I have read of ABA consultants who advise against any other 'intervention' whilst the child is on an ABA program on the grounds that it is important to prove that ABA is uniquely effective in treating autism. Yet some (not all ) ABA parents often do 'bio med' at the same time - at least that's the impression I've picked up. I actually think ABA has some good points though would not want a full program or anything like it. But if ABA was as effective as promoters claim, why would it be necessary to look at all the other stuff ? Equally if 'bio med' could work then why would you need an ABA program?

mrsturnip, if taking gluten out of his diet causes him less distress and he stops headbanging, what's wrong with that? Gluten intolerance is a recognised thing with national scientific approval. I'm not in any way saying that parents should not use any nationally recognised thing with sensible medical research behind it. Honest I'm not.

Pagwatch, I've tried very hard to explain that I'm absolutely not saying that parents here are ignoring the other needs of their child.

But there are parents who do take their children to the most insanely stressful places and then complain that they are completely unmanageable and demand a 'cure' for autism on that basis. And there are quack cures. And some of them are expensive.

I'm not in a position to influence anyone from trying or not trying anything. This is a free world. 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. It can and does lead people to exclude and marginalise us and treat us like lepers, unfortunately.

The respect for us often disappears with the sensationalist headlines saying we wreck families, that life with us is hell, that we should be shot if we go near their children as we are clearly all dangerous (yes, had that experience of people saying that to me), that we don't deserve to live in the first place. This is the reality we live with as adults in this society, and I can truly understand that a lot of us would really like a more respectful and less sensationalist attitude from the charities trying to 'cure' it.

DS2 never did ABA as I could never feel comfortable about it.

mrsturnip, do you mean the leaflet by the NAS showing one adult with an ASD who had said he preferred not to speak? They were quite clear that they were not saying this applied to all of us. If I had a choice, I'd prefer not to speak, to be honest. My natural language is pictures, but I can't make the rest of the world speak in pictures, alas.

I take your point Amber. And the very last thing I would want for my son is for his autism to be seen as somthing negative or dangerous.He is nearly 13. I am very concious of how he needs to cope with a potentially hostile world.

And I have said several times that I agree that some parents do persue treatments to the detriment of their childs peace of mind.

I think we are actually broadly agreeing. We just have different emphasis.

rosie39 - I can say that biomed has had a positive effect on dd1, alongside her natural maturation.

dd1 follows a gf/cf diet, and we supplement with various vitamins/fish oils/minerals and probiotics.

whnever she has a gluten or dairy transgression (through school, usually), I can tell that something has changed in her diet/environment due to her changes in behaviour. She becomes more agressive (is normally the most passive little girl you'd ever meet), has stomach pains (but loses the ability to tell me about them, I can only monitor her behaviour), and loses soem of her speech ability (itr becomes laboured, you can see her trying to swim through the fog to get the words out, it's a real struggle for her).

and her bowel movements are shocking - the result of a sluggish bowel unable to process anything.

with the supplements her bowels are a lot better (not perfect, but we're getting there), she has a normal pain reaction (useful if you're going to go through life safely - it has stopped her throwing herself off steps for instance) and can tell us more and more each day about what she is feeling.

the only part of the above which could be due to natural maturation is her speech improvements, but even those are lost if we do not supplement her, and keep her gluten free.

I am firmly in the camp of not wanting to wait until these studies are ratified - they work for my daughter, and that is what I am interested in.

gosh, must remember to refresh if I leave the computer while typing a post... conversation has moved on... sorry

Oh heck, now I've panicked myself by remembering all of the negative stuff people have said to me over the years...sorry...need to go and rest

jg3kids is this the kind of thing you are talking about? What do you think of this?

www.youtube.com/watch?v=aEw0Y5LJ6vg

(sorry can't do links)

No I didn't mean the NAS leaflet, I mean the website which says (still) that some people with autism 'prefer' not to speak. Would be fine if they also pointed out that the majoroty who are non-verbal are not exercising a choice.

cyber- ABA is a teaching method, that's all. It was an extremely useful method of teaching when my son had no language at all and no means of learning by imitation. Once he could imitate then yes we suddenly had a whole host of other teaching methods available to us, but without imitation how else do you teach?

Biomed addresses sensory/perceptual problems. Just like OT would (if we could get it). With the word less swirly or fragmented I assume it makes things easier for my son to learn. Being gluten free also massively reducing his compulsions, which also reduces anxiety and so reduces involuntary behaviours. Again doing what he wants is much easier if he's not having to rush off to turn on the microwave every 10 seconds. For a description of the involuntary nature of a lot of behaviours in severe autism read Lucy Blackman in 'autism and the myth of the person alone'. She describes in detail how she came to control her involuntary behaviours (actually using aversive techniques - she actually asked her mother to use them) -I'm not recommending aversives, just saying that for severe autism a lot of the behaviour is totally involuntary - Tito says exactly the same.

My son works hard to control his compulsions. If the washing machine is on, he gets us to shut the door, if he has a photo he is compulsive about he brings it to me to keep out of his room at bedtime so he can sleep. Gluten removal is another layer in getting rid of those compulsions.

Amber- the gfcf diet is not about an intolerance though- yes the medics accept intolerances - clinical medics haven't quite got as far as accepting opioids. A number of research medics do though.

So in summary. Biomed helps my sons mind and body to organise itself a little better. Any therapies we do are aimed at teaching. So when we did table ABA work it was specifically to teach imitation and in the main receptive language. Now we tend to do Floortime after school, partly for regulation (I am fed up with being bruised) and because now we have imitation I can do Floortime more easily (and for all sorts of reasons I personally prefer Floortime). And why not just chill? Because my son can't do that yet.

I find writing a hell of a lot easier than talking, but I wouldn't voluntarily stop talking.

The leaflet was badly worded - language/communication are difficult for ASD children/adults but I don't think conscious choice is the factor. I agree ABA can be useful to teach some skills and it would be nice if it that was acknowledged rather than dismissing it all because of its limitations - all teaching methods have limitations.

mrsturnip, you mean the NAS website that 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. Others will have good language skills, but they may still find it hard to understand the give-and-take nature of conversations, perhaps repeating what the other person has just said (this is known as echolalia) or talking at length about their own interests."

This seems deadly accurate to me, so I'm still puzzled what you're objecting to. If they said "some people with autism will never speak under any circumstances so don't even try to make them", I'd disagree with that, but that's not what they're trying to say in the overview leaflet which is meant to tell people a little about autism. After all, if I'm a member of the public and go to that website for info and think that I can hold a perfectly normal conversation with a person with autism, I'm going to be surprised when it doesn't work the way I expect. The NAS also give clear guidance on how to access speech therapy www.autism.org.uk/nas/jsp/polopoly.jsp?d=1757&a=3771

4 out of 5 people with an ASD are adults, and they should have the same rights and choices as other adults about where, when and how they speak. If they prefer not to speak, that's their right, I'd say. If they'd like to, then we should make every effort to help. As I say, I'd prefer not to, but realism means I have to.

I personally think the NAS have a good balance of fact and suggestions for how parents can help their child to communicate.

Amber I work day in day out with children with severe autism. This bit of the website "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." was meant to be describing severe autism. It is completely incorrect.

The children I work with do not 'usually understand what other people say to them'. My son's receptive language is pretty good (especially compared to others in his class)- he can follow instructions such as 'go upstairs to your bedroom and find your shoes', but in that sentence he understands bedroom and shoes then guesses the rest. If you strip everything of context and test his language you find he understands nouns and not much else. Very few verbs and nothing else in a sentence. This is fairly typical. If you look at the way teachers etc attempt to present instructions etc to this group they are not presenting information in a way that would suggest this group 'usually understand what people say to them'.

Nor do the the children I work with 'prefer to use alternative means of communication'. Some are very reluctant to communicate with anything and are just as likely to use the single words they have as symbols or sign. Others are pretty communicative (such as my son) try very very hard to use speech but are completely unable to because of problems of apraxia and motor planning or because of problems in word retrieval or understanding a sentence. Many are not thinking in what we call language - they haven't reached that stage.

If the powers that be at the NAS genuinely think that those who are non-verbal or who have limited speech "usually understand what people say to them and are preferring to use AAC" then the NAS has completely lost all understanding of this end of the spectrum.

I have no problem with the second part of the sentence about higher functioning individuals. My objection is to the suggestion that people who are non-verbal are making a choice. If my son was making a choice not to speak, I would be quite happy. He doesn't have a choice - he understands nouns and pretty much nothing else and cannot produce sounds except vowels. The other children I work with have similar levels of challenges to speaking. I'm sure that out there there is is the odd person with autism who chooses not to speak, but that is not the norm for the non-verbal group and should not be presented as such.

I agree with MrsTurnip. I think that statement seems to be ignoring the existence of those people with receptive language impairment and/or apraxia. And it's very important that a high profile campaigning organisation such as NAS does not promote inaccuracies.

Well, then I'll admit I don't understand at all. It just doesn't read that way to me at all.

"Some people with autism may not speak, or have fairly limited speech." This is a fact, not an aspiration, surely? Some of us don't.

"They" (the people in the sentence above) "will usually understand what other people say to them,"

Well, most of us (not the people with severe autism, perhaps) do usually understand what other people say to them. Not all of it, but what they're surely trying to say is that you shouldn't assume that the person who's not talking 'isn't there'. A common thing said by those with an ASD is that people talk over the top of us, or about us right in front of us as if we're not there/too stupid to understand what you're saying. I read this as them trying to explain this.

"some people....prefer to use alternative means of communication themselves, such as sign language or visual symbols."

This is true.

" Others will have good language skills, but they may still find it hard to understand the give-and-take nature of conversations, perhaps repeating what the other person has just said (this is known as echolalia) or talking at length about their own interests."

This is also true.

I don't think the NAS can detail everything about autism and language in just that paragraph, which is why the site has endless papers detailing further information?

www.nas.org.uk/nas/jsp/polopoly.jsp?d=1757&a=5319 is an example of such a further information sheet, which clearly shows the difficulties in communication with pages and pages of helpful info.

I don't see how people can take just that one paragraph in isolation and say the NAS is promoting the idea that we shouldn't be encouraged to speak, etc?

I think it's important to remember that one 1 in 5 people on the autism spectrum is a child, and that only 1 in 10 of those on the autism spectrum is a child with severe autism. The NAS have to speak not only for that 1 in 10 (and vital that they do, of course), but for the rest of us too. I think they do a good job, myself. Not a perfect job, but a good one.

I think the trouble is that I'm ASD so reading it differently to other people, and I'm too tired to work it out. Will drop out of this discussion - apologies...

I think at the very least the NAS are guilty of glossing over the severe end of the spectrum, and wanting to paint a nicer picture.

dd1 is unable to communicate effectively at school. she is not "choosing" not to speak, she is unable to. She loses the ability, as copiing with everything else takes up too much of her. so to speak.

I can see where professionals would label it as "choosing" not to speak (and have done so in the past), as in choosing not to engage with people less familiar, working to her own agenda, etc, etc

But I do not think this is true (well, dd1 is 4 - there is a certain amount of workng to her own agenda going on, but it si not all due to ASD). dd1 would love nothing more than to engage fully with her teachers, and join in the activities. But she is unable to talk there at the moment, and a lot of her expression is from verbal language. I do not think it is her choice to isolate herself, and switch off, it is something that happens to her as a by-product of holding a lot of other things together

I think the "choice" way of thinking can be very limiting, as her last SENCO was of the opinion that "dd1 would come around when she wanted to" (and this was someone apparently quite experienced is ASD), which was never going to happen in a million years. a belief that dd1 is in control of her actions (as in choosing not to speak) can be quite a damaging thing when it comes to people understanding how to motivate/encourage her

I do agree that the NAS paragraph can be interpreted in a few ways, depending largely on loose semantics, but I don't think it should be this way. Of course the NAS cannot go into every detail of ASD in an overview, but I think it should also not have woolly definitions as a starting point

I am a great supporter of visual learning aids and if I met someone tomorrow with a non verbal child, I would recommend PECS. However I do think there is a danger of visual supports becoming an end in themselves rather than a means to an end. I do use visual learning approaches but fade them out once more verbal language comes in (very slowly !) but I get the feeling that some professionals would rather fade out DS1's verbal language ! I told one SALT that he can ask for a bath or ask to go to bed - when she was suggesting a visual timetable to help him understand bath/bed. I just got the feeling that she either did not believe me or that she did not really care that he could already request verbally what he wanted.

agree, cyber - I think we have commiserated before about professionals insistance on PECS. They do the same with dd1.

I have just had a meeting with dd1's current school (fab, ASD specific) re: statementing. Our new LEA are working form the old proposed statement, and the school were bemused by the mention of PECS. dd1 is not talking at ehr current school yet, but they have seen (and heard!) her do so at pick up/drop off and know that she is able to.

the head very carefully tiptoed around whether we should use PECs, as did I until I finally said that imo dd1 did not need it as a form of communication - what she needed was support to be able to speak. the head agreed with relief.

dd1 does use visual prompts/support at school, but only because they are part of the whole structure.

I have had a SALT ignore dd1's verbal request for a story to be read ("SALT, read Dinosaurumpus please") because she wanted dd1 to PECS exchange for the story to be read... the mind boggles