I have an acquaintance whose child is autistic. I see her around alot and you would never guess that this boy has a problem. He will smile shyly at you and his affect might be a little flat but I have never once seen him exhibit any signs of autism. We are members of the same pool, so I do see her alot.
She had mentioned to me that she had him worked up for food allergies and he was found to be allergic to almost everything. She has him on a strict diet. Someone else told me that is why he does not exhibit any major symptoms anymore. She said that one day his sister was baking a cake and this boy put his finger in the mix and took one lick. He went through 2 days of kicking and screaming while he withdrew. Apparantly before, she couldn’t even take him out. I can attest to the fact that I never saw her out with him until this summer.
Apparantly this goes beyond the testing an allergist would do. There is a practitioner in my area (central New Jersey) that does this for kids with autism. It is supposedly extremely difficult to get an appointment with her because people come from everywhere.
I am sorry I don’t know more but this person is more an acquaintance than a friend. I have a very good friend who is good friends with her and she shared some of this story with me.
I just know how you look for everything to help this boy. It touches my heart so. I wanted to share this with you sooner but felt that since some of the information was not first hand I could not verify the accuracy of it.
If you would like I could find out the name of the practitioner who does this. I thought perhaps you were already aware of this because you are up on most of the issues concerning autism.
Re: what you are describing...
She is one of those people that would fit quite well on this board. The few times I have spoken to her, I have noticed that she is articulate and extremely convincing. She does spread the word, I can assure you of that.
Every time I see her out with her little boy I think about what a great Mom she is. I think my job is to tell her that next time I see her and as you said congratulate her on what she has accomplished.
I
where can we get this service?
Any idea where we can find MD’s educated on this sort of thing? I’m a psychologist who works with many kids on the spectrum and I want to refer kids for comprehensive testing and guidance in regards to allergies, diet, metabolism, etc. I had heard that “DAN doctors”- DAN stands for Defeat Autism Now- could provide this service. I’ve been trying to track them down. I’m in New England. Thank you for any help…
JLH
I will try to track down the name of the provider in my area. I may not be able to get it until after the holidays but I will share whatever I find out.
I think Dad might know more about the group you are referring too.
thanks!
I appreciate any help and certainly don’t mind the wait. Families can’t do much until after the holiday as well. It would probably be best to start a new topic so that it will be easier to find. In the meantime it’s back to an internet search…
DAN!
http://www.cgiworker.com/danlist/danlist.html
This list is by now means comprehensive, it is one that is hand picked by ARI.
I would like to comment that DAN! doctors are no better or worse than other drs. on average. Some are very, very good and some are not so very good.
What is important is to realize that the DAN! protocol will NOT help every autistic child any more than any other bio-medical intervention. What you will have to do is educate yourself about all the potential problems and “theoretical” treatments, and then see which best fits your child’s situation.
Parents of autistic children make very easy targets for snakeroot oil salesmen, so be cautious before you get out the checkbook.
Thanks Dad
Thanks Dad. Yes I will certainly try to get some information on who is best in my area before I make any referrals. If you hear of anybody good in the Boston/Providence area, let me know. I do see some kids with spectrum symptoms who also have significant somatic issues and I want them checked out by someone knowledgable in the field. Families are not getting the evaluations they need from their pediatricians. For instance, some are refusing to do allergy testing even though latest research places the percentage of spectrum kids with allergies at 37%. Addressing the allergies may not “cure” kids, but it can help. I’m trying to keep up to date with the latest research and weed out the “snake oils”. Families certainly have enough to deal with. Thanks for your input.
is what can happen to some autistic children when they are placed on the GFCF diet. Although many doctors and psychologists will scoff at the idea that a dietary intervention can have a major impact on an autie’s behaviors, parents who are successfully using the Diet will give you an entirely opposite opinion about its validity. Your friend is one more of those who will tell you that it can indeed work, and I thank you for posting this.
It is not exactly an allergic reation, which is why so many doctor’s refuse to accept the theory, let alone the practice of it. What it really is is an intolerance to specific proteins because of a breakdown in the normal digestive proccess. Often, along with the dietary problem will be an overgrowth in the gut of bad flora and fauna, for instance yeast or measles virus, which throws an additional wrench into things.
The proper way to test for this problem is not to check for the allergic reaction or antibodies, like one would for Celiac’s Sprue, but rather to test the urine for the evidence that the digestive failure is occuring, checking for those poly-peptides which come from partially digested proteins. Karyn Seroussi’s book outlines the entire scenario very, very well, should anyone be interested in a little “light” reading.
Two points to make here: If an autistic child has the LGS (leaky gut syndrome) and they do NOT address the metabolic process, it is doubtful that very much headway can be made in remediating communication and socialization impairment, or smoothing out behavior problems. Not all auties will need this, and the only good way to scheck for it at this point in time for most locations is to go on the Diet for about 6 weeks, noting any improvements along the way, and then challenging the Diet for a couple of days by “shock” reintroducing gluten and casein to see if the regression occurs.
The second is, less immmediate, but possibly more profound for the community of auties all around us. Autism strikes more people in the US than AIDS, and yetautism has received less than 4% of the research money that we have poured into AIDS. Of the paltry few million that we as a nation have spent in the last 10 years on autism research, better than 95% has been spent on tracking down the elusive autism gene (or genes) and not into treatments and other therapies that would represent hope for those already here among us. Consider it like this, what if 95% of all the research money poured into cancer had been spent strictly on genetic searches, and not treatments? Where would we be today in our ability to help people stricken with cancer?
Should the LGS finally get appropriate attntion and those parents and others who have stolidly insisted upon its veracity be proved correct, that would make some cases of autism bio-medically based, and would force the HMOs and other medical service carriers to cover autism therapies, something the majority of health plans currently do NOT (in my own HMO autism is specifically excluded by name).
(A very brief aside, I do not in any way shape or form mean to imply that AIDs is not worthy of the money we have spent on research. Quite the contrary, I think we should have gotten started on it much earlier than we did, and perhaps we would be farther along in curing or at least arresting it today. My point is that autism is everybit as devastating to individuals and familes as diseases like AIDs, and as such it too deserves the scale of attention that will make the difference in individuals lives and for society on the whole).
Next time you see you acquaintance, please congratulate her on doing what many say is impossible - finding and executing a remediation for her child which is effective. And also tell her that her work is only halfway done. Now she needs to extend her hand and give an assist to another parent of an autistic child, one who does not yet know that hope is out there, and for many if not most autistic children, a better life and higher level of existance can be achieved.