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Recent autism diagnosis... please help!


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Hello,

 

Someone close to me has just received an autism diagnosis for her almost 3yo DD. This family has been hoping to homeschool their three children. She is looking for books that are helpful on autism in general, and books and resources specific to HSing children with autism.

 

For the moment, they have started speech therapy, and are going to start OT in the new year.

 

I will give her the link to this thread once I get some responses, as she doesn't have an account here yet. She asked me to post for her, as she's a bit busy getting therapy and appointments lined up to start an account.

 

Thanks!!!

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I highly recommend reading The Autism Book by Dr. Bob Sears and Healing the New Childhood Epidemics by Dr. Kenneth Bock. The biggest gains we've seen in the year since my DD was diagnosed have come as a result of biomedical treatment. Traditional therapies like speech, OT, PT, social skills training, behavioral therapy, etc. are important as well, but the gains we've seen from those have been of the "slow and steady" kind. Whereas we've seen dramatic improvements literally within days of adding certain nutritional supplements.

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Dr. John Cannell, whose website is vitamindcouncil.org, some time ago authored a paper titled "Autism and Vitamin D" which I believe every parent of an autistic child should be made aware of. In the paper, he presented his theory that the recent epidemic of autism-spectrum disorders is solely due to the recommendation, since 1989, by doctors that pregnant mothers avoid direct sun and that they keep their newborns out of direct sunlight unless they are protected by sunscreen.

 

Even more interesting, he has been testing his theory by following children whose parents have decided to get their autistic children's vitamin D3 levels up to levels around 80-100 ng/ml, and he's gotten some extremely interesting letters from some of those parents who've followed his advice.

 

I have some considerable experience working with struggling readers, teaching them phonics, and became interested in Dr. Cannell's theory for various reasons, but mainly because I suspect that dyslexia and ADHD share a lot of common characteristics with those on the autism spectrum (though not as severe, of course) and so I began to speculate on whether D3 might be an issue with dyslexic children as well. This page on my website at OnTrack Reading, Vitamin D and Autism, gets into my ideas on dyslexia as the page progresses. However, the first half of it has several links to Dr. Cannell's site, his paper, and the parent letters, so you might want to pass it on to your concerned parent.

 

One of the first things I would do if I had a child with an autism diagnosis would be to get vitamin D3 levels up to 80-100 ng/ml to see if the symptoms began to improve. The safest way to do that is with direct sunshine when it's available, or with a tanning lamp that supplies UV-B rays, because the body has a natural mechanism that avoids creating too much D3 in the skin. As for the 80 ng/ml recommendation, that's about what lifeguards in sunny climates end up at after working for a summer, so it's hardly too high. In my case, I supplement (for other health reasons, not autism), and most parents will probably end up taking that route too, rather than moving south or purchasing a sun lamp. D3 supplements are very inexpensive, so that's not an issue. No one is going to get rich selling it.

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One thing I feel I could universally recommend for autism kids are Hanen materials. Autism's social aspects are the one thing you can't medicate/supplement to fully address.Their materials tell the parent exactly what to do to help a child discover those social things that other kids just naturally do. More than Words and Talkability are the two for spectrum kids at two levels of functioning. They are very, very good and her daughter is the perfect age. I also recommend she check out how useful her interlibrary loan might be in previewing books she might buy. Then she'll only need to purchase the ones she'll want to refer to again.

 

I found the diagnosis part a mixed thing emotionally. It was a way to move forward for me from the "does he/doesn't he have autism and what if stuff" that had dominated my thinking. I was glad to leave that stage behind. On the other hand having the diagnosis started a grief process for me. I worried I would always "see autism" when I looked at him from that point forward. I was emotional. If your friend is experiencing anything like that things get easier in time.

 

Side note on Rod's post:

First, I appreciate Rod's willingness to share what he's read about autism and vitamin D. It might help someone and it's well worth saying. My son has great D levels. I'm not going to say there is no connection for a specific child. But we now know the (myriad) of brain differences that are linked to autism in some people. The more common ones have to do with glutamate processing, mitochondrial function, and some other things that are easy to discover doing a pubmed search. Autism is not the same thing in every child. So what benefits my son (mitochondrial treatment specifically led to huge gains, vision therapy was huge as well) may do nothing for another child with a different genetic make up. Some kids benefit greatly from gluten and casein free diets for example. It did nothing for my son.

 

I just cringe a little when I see a suggestion that x or y specific thing is possibly "the thing" for autism. Autism is way too wide for that. Still, I do appreciate people sharing what they've learned that might help others.

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After almost a year with the diagnosis- heres my recommendations: Go Gluten Free Casein Free right now, preferably do a food sensitivities testing to eliminate any other food tolerances. Try to get Methyl B12 shots or atleast start on DMG (dimethylglycine) right away. These are the 3 things that seemed to help most for us. Also start up Speech and OT as soon as you get an appointment with good therapists. But most importantly- read read read- as much as you can.

These are my favourite reads-

 

- Children with Starving Brains: A Medical Treatment Guide for Autism Spectrum Disorder by Ms Jaquelyn McCandless

 

- Engaging Autism by Stanley Greenspan

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I wanted to come back and warmly thank everyone for their comments and suggestions. I have passed them all along to my friend, and she is very grateful. We especially appreciate sbgrace's reminder that autism is a very personal thing, and many things might need to be tried before the right combo is found for the child in question.

 

Again, thanks!!!

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