Comments on: Recovery Stories And A Dash Of Reality

By: Kev

Kev — Tue, 05 Sep 2006 15:22:00 +0000

Hi Eric,

I wonder how you controlled for all those things? I’m not doubting your opinion but with respect thats all that it is. I’d like to see some definitive science. The GFCF diet did absolutely nothing for Meg. What alters her behaviour is how old she is. She doesn’t tantrum like she used to when she was a toddler.

I think you have to be careful about attributing blanket statements like ‘behavioral and bio-medical actions DO make a difference’. Some very well may do. Stands to reason that someone with allergies will benefit from a restricted diet but I don’t think those things can be said to be treating autism but maybe they do make a child feel better enough not to react to certain stimuli. What do you think?

By: Eric Chiverton

Eric Chiverton — Tue, 05 Sep 2006 14:57:47 +0000

I would just like to leave a short comment on this.
I have a son aged 4 now who was diagnosed severely autistic at age 32 months. We have been doing ABA/VB on a regular basis, and have noticed that whilst this is definitely helping his language and general understanding, it does not help with his behaviour. We have introduced GFCF/enzymes/l-glutathione and B12 amongst others, and I can state categorically, that with the introduction of every single one of these, his behaviour has improved dramatically. with the methyl B12, it was quite astonishing how much difference in his general demeanour , eye contact and use of language.

I am sad that as with everything there is bad press and good press, that cloud the fact that behavioral and bio-medical actions DO make a difference. It obviously varies from child to child. It is impossible therefore to make a study on this that would make a definitive staement that such and such would always work. And yes, there is a school of thought that suggests some children recover on their own. But how much quicker and how much better if they were given help.

I wish any parent with an autistic child all the luck in the world, whatever they decide to do.

By: Ruth

Ruth — Mon, 21 Aug 2006 14:48:55 +0000

My daughter has made lots of progress (PDD-NOS) without a special diet, supplements or chelation. Only a few compounds are known to diffuse through the skin (such as DMSO). What about the chemical structure of these creams allows them to penetrate the protective layer of epidermis, and go through all the cells in the layers of the dermis to reach the blood vessels? Does it pick up the metals in the cells or from the plasma? My daughter likes brushing and other forms of massage. Could most of the benefit from trans dermal cream come from just massaging the skin?

By: Claire

Claire — Sun, 20 Aug 2006 05:23:18 +0000

My nephew has made dramatic improvement, no longer fits the diagnostic criteria for his autism (PDD-NOS) still has social delay and some mild motor coordination issues. He is excreting mercury in the elevated levels and is doing the DAN protocol including Gluten free casein free diet, many supplements, and transdermal chelation.

By: Jen

Jen — Sat, 19 Aug 2006 20:45:53 +0000

I loved the comment from the person that said, “I’m still recovering from my son’s autism.” That is exactly how I feel.
My son is eleven now and in an Asperger class, his original Dx was PDD, and he was very slow to develop language. We did a lot of therapies that I thought were helping. I am pretty sure they improved his digestion. They put me in horrible debt. Now, we just use digestive enzymes and try to roll with everything else.
Outside of cyberspace, I know more parents that just roll with it than parents that dig into all the therapies. Their kids vary from being very involved to just mildly affected.
It makes me wonder if I put myself into debt, worried, and subjected him to treatment for nothing.
However, it is very hard to see your child so withdrawn and unable to communicate and not do anything extra to resolve that for him. I think there are some real opportunists who take advantage of that. I also think parents are trying some weird stuff before knowing for sure how it will effect their child. I was one of them. I can’t tell for sure if he is better or worse for it. He is completely verbal, but still has social deficits.
I wonder if I just let it roll from this point on will he mature, be able to hold a job, get married, and have a family? Or should I still be looking for extra ways to help him? Is thinking those goals are possible just setting myself up to never be happy with what is? Is there anyone out there that was moderately to severely autistic, and matured enough to not be disabled by it as an adult?
Thanks,
Jen

By: LB

LB — Thu, 17 Aug 2006 20:25:24 +0000

Hi Cheryl. It’s ridiculous on some of the parent groups. I know some people say how can parents believe this stuff, but what some of them don’t realize is that if they get on certain groups (even local ones) the conversation can be completely dominated by this. So if there are no opposing viewpoints presented than there is no reason for them to question what they are hearing. It is important to keep voicing your opinion for the newbies on these groups.

By: Cheryl

Cheryl — Thu, 17 Aug 2006 18:42:54 +0000

Will check it out and on the same subject, have you seen the documentary “normal people scare me” by a 16-year old boy with HF autism? I loved it, found it interesting and think it helped me understand my son’s perspective more, even though he’s still just a baby….

Cheryl

By: Kev

Kev — Thu, 17 Aug 2006 18:34:11 +0000

Hi Cheryl, you’re very welcome :o)

If I might plug another site I think you’ll like, go to Autism Hub where you’ll find lots of blogs written by autistic people, parents of autistic people and/or professionals working with autistic people. The common thread is that we don’t desire a cure. Have fun :o)

By: Cheryl

Cheryl — Thu, 17 Aug 2006 17:36:00 +0000

I am so excited to find this blog. I belong to a parent message board that jumps down my throat and calls me a bad parent for not going down the biomed route! I also get “you’re son obviously only had 20% of what my child had”. I didn’t realize we were competing. Anyway, my son will be 4 this month, he received a PDD-NOS diagnosis at 26 months, and has gone from non-verbal to age appropriate speaking. Only received ABA, Speech, and OT. ABA was phased out 6 months ago. He has also become very social, he’s very imaginative, animated and has a great sense of humor. His weaknesses include very delayed writing skills, and non-compliance/self-direction type stuff. So, I don’t think he’s “cured”, but I know he wouldn’t meet the so-called criteria today. I also completely accept him for who he is and don’t view him as “broken”. Seems like some of these biomed people want to ‘fix’ there child. I have one parent I know who is chelating, oxygen chambering, B12, GFCF, blah blah, and he’s out of school 50% of the time. Her kid is STILL autistic! His body goes through hell, she’s stressed out all the time, and she tells me that if I let my son get pre-K immunizations that I deserve what I get! HUH? Anyway, so nice to see a group of people on a similar page as me….

By: Jennifer

Jennifer — Wed, 16 Aug 2006 02:03:13 +0000

Joseph,
I think the idea behind the study was not to examine ABA, per se, but to look at the characteristics of children that had “optimal outcomes”, particularly their language abilities.

But the study does say something about ABA. The authors had access to the histories and data from a large caseload of children who had received ABA. They work for a big ABA provider. And, they could only find a few children that had optimal outcomes. Even though these children were mainstreamed, and working academically at an age-appropriate level, (i.e. “recovered” as per Lovaas) they still could be diagnosed under the austistic spectrum.

So this study says that “optimal outcome” or academic mainstreaming without support, is rare. It also says that “optimal outcome” does not equal loss of diagnosis.