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Early signs of autism? Mercury?

(39 Posts)
guyshahar Wed 08-Jun-11 08:08:52

For the past couple of months, our son (21 months old) has been displaying what we are afraid might be early signs of autism. He plays with us a lot less (and seems to have less fun in general), doesn't respond to his name and rarely makes eye contact. He doesn't seem to show understanding of basic instructions or communication. He also doesn't chew solid food (he just lets it fall out of his mouth) and is not talking yet apart from copying certain sounds in quite a baby way.

We are going to ask for an autism check, but do not have a lot of faith in the NHS to diagnose correctly or give the appropriate help. What advice does anyone have to help our son?

Could this be the results of mercury in his immunisations? Are there any good ways to clear this from his system?

emmyloo2 Wed 08-Jun-11 08:24:50

I am sorry to hear this. It must be incredibly difficult and it sounds like the autism check is the correct process.

Mercury (which was in the form of preservative thimerosal has been phased out of vaccines for a number of years now I believe.

I have no other advice I am afraid. Does the NHS refer you to an autism specialist? Hopefully someone else will have some more helpful advice.

monkoray Wed 08-Jun-11 11:09:08

Emmyloo is correct, there is no thiomersal (or mercury) in childhood vaccines. There are tiny trace elements in some brands if flu vaccine.

If you are concerned about nhs diagnosis you could contact one of the autism charities. They may be able to advise on how best to get a diagnosis and what questions to ask.

Also you could post this on the special needs thread as there may be mums of autistic kids who could advise.

RunningOutOfIdeas Wed 08-Jun-11 11:17:20

Any worries about developmentshould definitely be raised with your GP and HV. I do hope everything is OK with your DS.

Please do not worry that mercury in vaccines could have caused problems. There is a lot of very wrong information on the internet about this. The mercury that is in some vaccines is ethyl-mercury. This is different to the 'raw' mercury and methyl-mercury that have been associated with developmental damage.

Here is the WHO's position:
The Global Advisory Committee on Vaccine Safety concludes that there is no evidence of toxicity in infants, children or adults exposed to thiomersal (containing ethyl mercury) in vaccines.
July 2006

In 1999, concerns were raised in the United States of America about exposure to mercury in vaccines. This was based on the realization that the cumulative amount of mercury in the infant immunization schedule potentially exceeded the recommended threshold set by the United States government for methyl mercury. However, thiomersal, the preservative in some vaccines, contains ethyl mercury not methyl mercury. The Global Advisory Committee on Vaccine Safety (GACVS) first assessed this issue at a special meeting in August 2000. The Committee review has been ongoing since then.

Expert consultation and data presented to the GACVS indicate that the pharmacokinetic profile of ethyl mercury is substantially different from that of methyl mercury. The half-life of ethyl mercury is short (less than one week) compared to methyl mercury (1.5 months) making exposure to ethyl mercury in blood comparatively brief. Further, ethyl mercury is actively excreted via the gut unlike methyl mercury that accumulates in the body.

Four independently conducted epidemiological studies investigating associations and frequency of neurobehavioural disorders in relation to vaccination with thiomersal-containing vaccines have been completed in the United Kingdom of Great Britain and Northern Ireland and Denmark. The findings from these studies do not challenge the safety of existing thiomersal-containing vaccines in infants. Recently two studies were published alleging reduction of neurodevelopmental disorders in the United States of America following discontinuation of thiomersal-containing vaccines in the national immunization programme. The Committee found the conclusions made by the authors unconvincing due to the study design, and the data source.

The GACVS reviewed available information on an ongoing thiomersal pharmacokinetic study in macaque monkeys and assessed the validity of animal models in studying associations between thiomersal and neurobehavioural disorders in humans. The Committee was informed of ongoing human neurobehavioural studies and thiomersal exposure in the United States of America and Italy and of a study on the suitability of thiomersal-free vaccines in multidose vial presentations, assessed by retained sterility for up to 30 days.

On the basis of the foregoing, the GACVS concluded that the most recent pharmacokinetic and developmental studies do not support concerns over the safety of thiomersal (ethyl mercury) in vaccines. The Committee concluded, and advises accordingly, that there is no reason on grounds of safety to change current immunization practices with thiomersal-containing vaccines, as the risks are unproven. However, data for well-nourished neonates born at term cannot necessarily be extrapolated to preterm or malnourished infants. Studies on the latter group would be difficult to conduct, but the GACVS encourages further research.

lingle Wed 08-Jun-11 13:48:39

Hello again. You sound like you are progressing things really fast. I hung out on the special needs board for about 3 years, mainly with people whose kids had language problems or ASD. Experiences of the NHS varied hugely. It's true that many people had to "fight for diagnosis" but others got great help. so keep an open mind and get that hearing checked and of course rule out medical issues. Remember that "he's not understanding me" is usually taken seriously. "he's not talking yet" isn't.

Assuming (and this is still a huge huge assumption of course) that you're looking at some kind of untypical development here, I think your most likely problem in the NHS will be that often they want to "wait and see" until a child is 3. That is too late, much too late. 21 months, as I said before, is a great time to get started.

re the language: if he is not understanding basic things like "look, there's teddy!" then you have either a hearing problem or a "receptive" language delay. "receptive" means understanding, as opposed to talking. Delay means he may simply grow out of it or it might turn out to be something more long-lasting. One of my kids started growing out of it at about the 21 month stage. The other one didn't start really growing out of it until he was 3. And obviously some kids just don't grow out of it at all so progress is slower.

Let us know how you get on at the doctors. If you feel ready to start reading up, my recommendation would be "More than Words", published by Hanen, (www.hanen.org) available more cheaply (still pricey but worth it) on the www.winslow.com Winslow publications site. Hanen's techniques are "naturalistic" and uncontroversial and help most children. Like the hearing test, it's always a good idea to get ahead of the game and master these techniques now. Either they will work (great!!!) or, if they don't work, you can say to a speech therapist in 6 months "I've worked through hanen's More than Words and use all the principles and it still isn't working" and she will take you more seriously if she can see that is the case.

lingle Wed 08-Jun-11 13:49:40

sorry, for those people lurking - I misspoke- 3 is NOT "too late". But 21 months is better, much better.

lingle Wed 08-Jun-11 14:02:55

Just to explain a bit more, what we call Hanen techniques are "naturalistic" techniques - so they just seem like playing - indeed, they are playing, as that is exactly what you want him to do - but in a much more focussed way, without some of the many bad habits that we adults have (such as saying "can you can X?can you say Y?").

Eveiebaby Wed 08-Jun-11 22:27:46

I would advise you to make contact with your HV or GP to explain your above concerns - they should refer you on to a Peadiatrician. 21 months is not too early. It does very much depend on where you live as to how quickly you will be seen or given a diagnosis (if necessary). If HV or GP will not take your concerns seriously see if you can self refer to a NHS Speech and Language Therapist (usually based as your local child development centre). Do you have a local Childrens Centre that runs drop in speech and language sessions. If so you could always take your DS there in the meantime to see if anyone can give you some advice.

skybluepearl Wed 08-Jun-11 22:45:14

Do talk to your GP and HV. Mouth sensory/food issues, communication, eye contact can all be an autistic traits - or the traits of a normal kid!Try this website for an autistic/ASD check list - it's the national autistic society. http://www.autism.org.uk/ You could even ring them with your concerns maybe? I think if your son is autistic it's very important you try and push for an early statement. that will give you priority in relation to schools and when he starts in reception they will be able to give him the support he needs.

guyshahar Thu 09-Jun-11 15:48:17

Thanks for all the responses. (about the vaccines, I wrote mercury, but I meant alluminium).

We have a problem very much as you (Lingle) said - we went to the doctor but were told that they never refer any child for development issues before 3 years old (she might even have said 4) because of the different rates and paths of development that young children had. I explained that we were worried that he was actually going backwards, but she was adamant that nothing could be done before that age.

Our health visitor has referred him for a hearing and speech test, but we really want to move faster than this. How can we make the system work quicker for us?

Firsttimer7259 Thu 09-Jun-11 16:46:23

Just to add my tuppence worth. I took my daughter, then 9-10 months, to GP about the fact that she didnt use gestures, copy, did have signs of understanding me. He referred to Pead and we are now working on trying to understand why she has a developmental delay as well as starting to get help in dealing with it. Shes now 16 months. Its taking time sure, but its all early days yet. So far tho the NHS has been supportive (if a little slow). We have seen Pead twice, and had various tests. Its not really about the diagnosis at this age (if you are lucky) I think but more about early intervention. You can do things to help children acquire skills (I think, v much a newbie)

I am surprised at not being seen if you think your child is regressing. Can you note down exactly what skills your child is losing and try again just about that?

seaweed74 Thu 09-Jun-11 20:37:00

My dd was first referred to the paediatrician by GP at 21months as she was not weight bearing. Dd is now 2.5yrs and is receiving physio, speech therapy, awaiting repeat hearing test and hip scan. My dd has developmental age of approx 15 months currently. That news was bit of a shock - told this on Monday! NHS have been brilliant but it is slow. We were very lucky to be referred to community paediatrician rather than hospital based one as apparently quicker! We live in Scotland so system may be different.

We have diagnosis for gross motor skill delay, but not the other delays. Blood will be taken next week for various tests to try and find a reason. Autism may be a possibility, but at the moment a slim one. We do not expect an answer any time soon. In the meantime we have a lot of medical support.

I can't pass on any tips for speeding up the process, but your ds having been referred for speech and hearing tests will hopefully either shed some light on your situation or get you into the system. The community paediatrition has definitely been a huge help for us but the whole system is frustratingly slow.

Not sure if this'll be much help!!!! First post!!

smallwhitecat Thu 09-Jun-11 20:40:44

Message withdrawn

seaweed74 Thu 09-Jun-11 20:50:00

Just a word of caution....my dd would have failed nearly all the questions on the CHAT test up until a few months ago. Still would answer "no" for many questions now, probably because of scope of her delays. Def worth a look but don't assume that is your answer. Might be something else.

growingstrawberries Thu 09-Jun-11 20:59:57

agree with smallwhitecat. google CHAT test (or M-CHAT), and then take that down to the gp/hv and discuss it. it is a screening tool for autism.

the results indicate whether a child should be investigated further (not passing the CHAT test does not automatically mean autism)

not referring before 3 is bollocks. you may need to push harder, and collect evidence.

do not be fobbed off.

in some areas you can self-refer for some things like Hanen courses, or Portage - this may be worth looking into as well.

Firsttimer7259 Fri 10-Jun-11 11:06:35

Hmm, I think this is what I wanted to say but didnt: dont go in saying 'I think he has autism'. Try to stick to the facts and not diagnose: so list things you think he should be doing but isn't and esp things he could do but has lost.

Things like CHAT test or the Griffths scale can help you break down skills into components. Also you want a referral not necessarily a diagnosis.

guyshahar Fri 10-Jun-11 11:40:59

Thanks for all of this. WIll follow up - looking up the CHAT now

Is a Hanen course available on the NHS? What do I need to ask for? WIll the doctor have heard of it?

What is Portage?

RockinSockBunnies Fri 10-Jun-11 11:45:31

Also, if you have concerns, if possible, I'd endeavour to start some form of intervention (ABA for example - the book, 'Let me Hear Your Voice' by Catherine Maurice is excellent and very detailed about her autistic daughter who was diagnosed aged around 18 months) as soon as possible, if that's something you could implement, whilst going through what is normally a long, drawn-out and not very coherent process of diagnosis.

In general, the earlier that intensive intervention is given, the better the outcomes.

There's lots of really good information on the Special Needs board.

lingle Fri 10-Jun-11 14:12:48

that's disappointing about the doctor's reaction but don't give up. Can you tell us any more about how the consultation went? Have you found out if you can self-refer to speech therapy?

in the past, there used to be a very negative view that "as we can't do anything about it anyway, why refer early?" Now it is known that this isn't right because you can (at the very least) accelerate the child's emotional and intellectual growth - and many would put it stronger than that.

The simplest way to access Hanen is just to buy their books - ("More than Words" in your case) www.hanen.org or cheaper at winslow publications. Or go to the library and order it. Hanen sorts out your techniques so they are the best they can be - it gives your child the sorts of advantages that the child of a speech therapist would have IYSWIM.....

I agree with firsttimer here. Whatever you do, don't get trapped in a "either he is ok or it is autism" dichotomy where there are just two possible answers, one that you insist on and one that the doctor insists on. Instead, just stress the incontrovertible facts: that he plays with you less, that he doesn't seem to understand you - whilst still feeing free to express pleasure in his strengths.

How is he doing? has the "going backwards" stuff settled down at all?

guyshahar Fri 10-Jun-11 17:07:38

Thanks evenyone (especially Lingle for continuing to follow and take an interest)

Yes, the doctor was quite determined in her attitude that children below 3 should never be refered to a pediatrician, as fluctuations are probably part of the normal development process. She kept coming back to that mantra, whatever we said about our concerns about his regressing. I would guess she doesn't have children.

However, we went to see a very nice new health visitor near us, and she immediately referred Daniel for a hearing and speech test. She said that the speech test is not simply about the mechanics of speaking, but also about non-verbal communication, so the consultant would be the one to refer us on further if they thought anything was wrong.

He hasn't gone further farther backwards recently, but hasn't really moved forwards either. It is very painful to see sometimes. He used to love other children, but no more. At his playgroup this morning, another boy came and sat nicely next to him. Daniel froze and looked down as if totally uncomfortable. Then he started to cry.

We have started to give him Soya Lecitin Granules with his breakfast everyday (we have been told it strengthens neural connections, and that there has been some research that mothers who take it when they are pregnant have much more intelligent babies into adulthood). We have also ordered "More than Words" now. Thank you for the recommendation. It should arrive next week. If I understand correctly, it looks like it will help us to help him to want to communicate with us, and open up. ("Let me Hear your Voice" looks pretty good as well)

We really want to do something for him now when this is at a relatively early stage, but it is so difficult to know what to do, and the NHS isn't beating a path to our door to help us. My wife has even been looking at an Israeli clinic that she found on the internet that apparently has a 75% success rate in resolving development difficulties in under-3s. Sounds very promising but can't help fearing that we could lose a lot of time and money (that we don't have) for some scam, and then not have anything left for any real treatment.....

Firsttimer7259 Fri 10-Jun-11 19:13:59

Sorry to hear you aren't making as much progress as you'd like. Could you change GP? Perhaps your HV could recommend a practice that is less reticent about referrals?
I dont really know much about autism or the services available, very much recommend the special needs board

quietlysuggests Sat 11-Jun-11 11:57:26

Message withdrawn at poster's request.

lingle Sun 12-Jun-11 12:18:57

"However, we went to see a very nice new health visitor near us, and she immediately referred Daniel for a hearing and speech test. She said that the speech test is not simply about the mechanics of speaking, but also about non-verbal communication, so the consultant would be the one to refer us on further if they thought anything was wrong."

now that's more like it smile - that's a real step on the right path.

"He hasn't gone further farther backwards recently"

that's good to hear. It must have been a hard few months.

"We really want to do something for him now when this is at a relatively early stage, but it is so difficult to know what to do, and the NHS isn't beating a path to our door to help us."

Oh don't worry we can help you there! Your problem is that there are a wealth of options and lots of arguments between professionals and I guess lots of accusations where money gets involved or people criticise each other's techniques. I'd start with the "natural" techniques though (Hanen stuff) because you know with these you can do no harm. I would really apply yourself to mastering the "simple" stuff. I can't comment about diet stuff.

"More than Words" is going to introduce you to some really important concepts:

1. your son's senses may be working in an imbalanced way - his brain may be hearing certain kinds of noises as registering them as very loud, for instance, even though it is not hearing other noises. My five year old still needs to wear ear-defenders in public toilets - I believe the sensory problem that caused this has now faded - but because I wasn't wise enough to take his sensory problems seriously, he has been left with anxiety and a phobia.

2. your son may be capable of communicating better with visual things than words and this visual communication may help him "see the purpose" of words that are being said to him (provided they are being done at right level).

Keep at it!

smallwhitecat Sun 12-Jun-11 14:02:46

Message withdrawn

Danthe4th Sun 12-Jun-11 14:20:26

Have you a childrens centre near you, because the family support workers can also do referrals if they think its necessary. If they have a toddler group why not go along and express your concerns to the staff. They also have access to the outreach workers at local special schools which they would be able to speak to and perhaps visit you and see your child at one of the groups.

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