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Here are some suggested organisations that offer expert advice on SN.

Fantastic web site on autism....thousands of pages from one mom

(32 Posts)
mamadadawahwah Mon 08-Aug-05 22:44:17

www.autismhelpforyou.com I just found this site a few days back and cant believe my luck. This woman had delved into every possibility regarding biomedical and therapeutic intervention and has her own ideas on the links of autism and heavy metals, etc. She even opines on the possibility that autism may be early onset schizophrenia as the symptoms are so similar.

You would have to look at her site to really get a feel for all the fab work she has done and its all for free. She also has a number of free "teaching manuals" which she has developed herself. The site is a bit "all over the place" but if you take the time to look through it, you will undoubtedly find something of interest and definitely something which applies to your asd child.

Let me know what you think of this site. I have learned so much from her and can't thank her enough.

jayzmummy Mon 08-Aug-05 23:18:38

here

Socci Mon 08-Aug-05 23:40:14

Message withdrawn

QueenOfQuotes Mon 08-Aug-05 23:47:34

and look at this

jayzmummy Mon 08-Aug-05 23:54:01

nice house for sale too!

QueenOfQuotes Mon 08-Aug-05 23:55:36

ooo yes - lovely setting!

mamadadawahwah Mon 08-Aug-05 23:55:38

Well, i am actually new as is my son, to the autism diagnosis and i found it very very helpful. I am sure there will be others on mumsnet who will also find something of use on it. I also believe in God as do millions of others, thousands of whom may have kids with asd. The best information i have found about asd has undoubtedly come from parents of asd kids. This woman's take on many things is based on science, like iron overload, insulin problems etc.

The doctors dont have the answers and I am sure that reducing the debilitating factors of autism will continue to come from parental input, research and experience.

QueenOfQuotes Mon 08-Aug-05 23:57:27

"This woman's take on many things is based on science, like iron overload, insulin problems etc. "



Yes but she also says

" All information provided by Jeanne A. Brohart and on her website is for INFORMATION PURPOSES and TO GENERATE DISCUSSION ONLY and should not be taken as medical advice or any other type of "advice". Information put forth represents OPINIONS OF A MOTHER ONLY and provides information as it relates to one family's journey with autism"

mamadadawahwah Mon 08-Aug-05 23:57:57

Especially since my son's paediatrician has offered NO help and NO advice as to what to do. With hundreds of cases to tackle she just doesnt have the time to do her own research. This is the pity of it. A very bright, empathetic woman, with kids of her own and a wealth of experience, but so overstretched.

mamadadawahwah Mon 08-Aug-05 23:58:51

Especially since my son's paediatrician has offered NO help and NO advice as to what to do. With hundreds of cases to tackle she just doesnt have the time to do her own research. This is the pity of it. A very bright, empathetic woman, with kids of her own and a wealth of experience, but so overstretched.

Socci Tue 09-Aug-05 00:01:22

Message withdrawn

mamadadawahwah Tue 09-Aug-05 00:07:54

Well, socci, i totally disagree with you and my intention of putting this web address on mumsnet was not to argue. I personally dont think anyone can know their stuff enough to help my son or yours. There just isnt enough known. What will work for one child may not work for another. It would take me days to explain my sons "behaviours" and months to compare his with yours. What this woman has done on this website has been a great help to me because what she says makes absolute sense to ME. As i said before doctors arent going to help my son. Its the parent who becomes the expert, not the doctor.

I cant use the vaccination example regarding where my son got autism from because he wasnt vaccinated. also, i dont want to open up that can of worms. However, I do not see a political will to address the needs of my son or your child anytime soon. My own GP was shocked last week when he got the report from the CDC regarding my son. He really couldnt believe it. He, by the way is the doctor who deals with children in this particular surgery. So, where does that leave me?

I will take the advice and read parents experiences way before i listen to a scientist or doctor.

mamadadawahwah Tue 09-Aug-05 00:10:15

I actually should retract some of that statement because next month my son and I are going to a private clinic, a very expensive private clinic to discuss a number of different therapies. I have already spoken to this person who has provided me with a wealth of little known information regarding brain function and biomedical interventions (which i know work, cause my son is already responding).

So yeah, i will listen to at least one doctor anyway.

QueenOfQuotes Tue 09-Aug-05 00:14:25

"Well damn them GENERAL practioners hey, who aren't experts in everything"........that's funny isn't as GENERAL practioners, while often specialising in one "AREA" don't know everything about every illness and condition.......that's why they you get sent off other places for tests/reports (well thats what I've always believed).

Davros Tue 09-Aug-05 07:58:38

Agree QoQ, I'm always surprised when people are angry that a GP doesn't know about everything, I always thought they are supposed to be a first point of contact to then refer on.
I don't agree with you mmddww that what works for one child won't work for another, if its scientifically based then that's the best choice.

anniebear Tue 09-Aug-05 08:01:59

Well it may not be for everyone but if mamadadawahwah gets something out of it and enjoys the site, good !!

It was nice of her to share it

anniebear Tue 09-Aug-05 08:02:48

Bet she wishes she hadn't now!!!!!!!!

Fio2 Tue 09-Aug-05 08:05:46

it is frustrating though that GPs have such little understanding of development delays and disorders. not to mention a lack of understanding about recessive genetics, when even a fool of the street (myself) can understand it

I think if it helps madawahwah comes to terms with it then it is fine, even though i havent even clicked on the link as i have read so much tripe on the internet myself

misdee Tue 09-Aug-05 08:09:45

i havent clicked on the link, but a word about GP's. mine has been fab. he has researched dh condition, looked up things on the internet etc. he has never come across DCM before and LVAD(young doctor), but i know he has helped at least one other patient who has had be referred for tests (someone i know from the school) for DCM. They dont have time for their own research generally, as you say they have 100's of other patients to deal with so i am imensly grateful for my GP's time and effort in helping my family.

mamadadawahwah Tue 09-Aug-05 08:55:51

For those who dont have the time now to look at this woman's website and for those who are cynical about "another" autism website, here are some of her topics:

"The danger of pretend play"
"Safety Issues, A Matter of Life and Death", (she realised her son was only able to go forward, not backwards! very dangerous near water)

"The inability to recognise faces or even see faces, called Prosopagnosia"

"Breaking eye contact with people"

etc etc etc

I am quite sure that anyone who reads this site will find something of interest, particularly her work on the insulin and iron connection.

Twiglett Tue 09-Aug-05 09:01:31

I think its unfair to jump on MMDDWW becaue of this website .. I think when you get first diagnosis of anything one of the stages you go through is the flailing around reading and looking at everythinbg .. if you find a site you particularly warm to / relate to then all very well .. it helps in the grief / adjustment process

I do think though as time goes on you learn to differentiate between the 'snake oil' sites and the real sites

the only piece of advice I would give, if I may, is please don't totally discount traditional western methods .. they are not all evil .. and it is incredibly easy to get in a state of mind where traditional is always wrong and only alternative methods will do .. use what you can .. use what works

good luck mmddww

mamadadawahwah Tue 09-Aug-05 09:19:00

Well, twiglett only reason i put this site up is because its not a snake oil site. But anyway, one has to read it first to make their own opinion. I did, i liked it and i hope someone else does too.

The been there done that, wore the t-shirt attitude gets you nowhere as far as autism is concerned. It hasn't all been "done" and for those who say they have done it all, their child is not my child.

Anyway, end of discussion as far as i am concerned. Read it, dont read it, up to yourself. I am just glad i found it.

coppertop Tue 09-Aug-05 09:24:23

I've clicked on some of the links on the page and tbh very little of it seems to fit my personal experiences. Usually when I look at ASD sites I find myself nodding away while I read because it seems so familiar to me. This time there was nothing. The opposite may well be true for MDWWW though.

Jimjams Tue 09-Aug-05 09:32:15

The site is very hard to read!

I think the problem with sites like this is that this woman - with the best of intentions- is dishing out medical advice. Such as iron overload can cause anaemia so if your autistic child has anaemia you shouldn't given them iron. She saqys that on there- and that could be very dangerous advice for a child who is anaemic. Most up to date mainstream people these days don't tell you to shove iron into anyone, but if you are low in iron you will anaemic and that can be corrected with iron (and not any other way).

Now I'm all for alternative approaches. We see a nutritionist. He has a better understnading of the biochemistry of autism than anyone I've ever met. But he does something very important- he tests and then treats on an individual basis. He also has the scientific background to understand the papers he reads and then apply them. A lot of the biochemistry/immunology papers are very complicated- and however well meaning someone is it is easy to misunderstand or over simplify.

Many mainstream researchers now believe that mercury and other heavy metal tooxicity is involved in many cases of autism. There is a lot of mainstream research to be published over the next few years. The research so far shows that chelation helps whilst it is ongoing, but the advantages stop once chelation stops. In other words the process that is going wrong is still poorly understood.

BY all means look outside your GP's (I've never asked my GP anything about autism- although I agree they should be better at spotting when young children need to be referred on- someone should be teaching them that), but be careful where you pick your sources.

You are better off looking at published research as you can then see clearly what has been tested and what the results are. You don't have to agree with what is said, but at least you know why its been said.

QueenOfQuotes Tue 09-Aug-05 09:51:35

"I think its unfair to jump on MMDDWW becaue of this website "

But to be fair Twiglett, it's not the first time she's posted threads like this one..... often with comments like

"Anyway, end of discussion as far as i am concerned."

thrown in when anyone dares to not think the sites are wonderful and helpful or to criticise what she's said/posted

I'm still highly suspcious of that fact that the link I posted is exactly the same information as the first link - so effectively saying caterogircally that schizophrenia and autism are the same.

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