Parents frequently express concern that their child’s progress is too slow. They want to be sure that something is not being missed. As months and years pass, and especially if there is little progress from conventional therapies, their search begins and/or intensifies.
Resources include the Internet, books, lectures, webinars, conventions and conferences, schools, professionals of all varieties, family, friends, and other parents. The weaker the science, the louder the opinions.
Here are a few helpful choices:
Googlescholar.com is the website to search for literature on topics that require further understanding and research.
SFARI gene is the site for reliable, accurate information about any genetic variation. Results that were previously considered ‘not significant’ may be just the opposite.
Autism360.org is the place to upload your child’s data, so that individualized therapies can be developed.
PDR.net is the address for reading about pharmaceuticals prescribed by your physician. True, it’s pretty scientific, but it’s the one the doc checks (or should).
WebMD.com and Mayo Clinic both display a lot of medical information, much of it in lay language, based on reliable resources. This can be useful when the pediatric specialist, e.g., strings together an incomprehensible list of terms about your child.
Quackwatch.com is the kook meter. The mission statement describes, “… an international network of people who are concerned about health-related frauds, myths, fads, fallacies, and misconduct.” Is that because those who do not agree with their conclusions are people who are not concerned?
Tacanow.org is the cookbook resource for GF/CF recipes.
CDC.gov is the site for the most complete government data on autism in the US.
Start with Dr. Martha Herbert’s The Autism Revolution. This story describes a sea change in our understanding of ASD.
Temple Grandin’s books explain autism from ‘the horse’s mouth’, so to speak. The Reason I Jump is fine, but Ido in Autismland provides more insight into the autistic mind of children and teens.
Asperger’s families can learn a lot from The Curious Incident of the Dog in the Night-time, which is presently a Broadway play.
The International Meeting for Autism Research continues to grow in scope and size. What an ideal venue to meet the present and future experts in this field.
The Medical Academy of Pediatric Special Needs now sponsors the most academic meetings. Although the semiannual event is geared more toward professionals, many parents could benefit from some of the seminars.
The original site for ‘DAN’ doctors is now the Autism Research Institute. The educational offerings are significant and quite helpful to families who want to better navigate such a confusing condition.
Autism Speaks performs many of the most basic and wide-ranginging of informational sites, including helpful interactive pages. The spectrum of services ranges from funding to fund raising.
Try this example:
There are reports of great progress from giving worms (Helminths), worm removal, fungal administration, (Saccromyces), fungal removal (fluconazole), and fecal restoration. Trying to achieve gut health is the common feature.
Next, what is the most scientific way to study and treat that condition? Utilizing reliable knowledge bases, a reasonable plan can be formulated. Safety, effectiveness, and predictable performance should be part of that protocol.
The lack of trained professionals and overwhelming number of new patients eventually leads families to some sort of journey into the unknown.
Checking out the resources that the pros use may be helpful in that undertaking.