I had been hosting The Coffee Klatch Monday Tweetchats for about two years. This meant juggling the chats, working with Pierrette for our KidCompanions Chewelry business, writing for our Special Needs Blog, and reading and reviewing books for our Special Needs Book Review site.
Have I mentioned I am supposed to be retired from teaching after 30 years in elementary classrooms? We are overjoyed that our chewy/fidget business is making great strides forward, but it required more of my time, therefore I decided to stop hosting the Tweetchats. It was great fun and I met wonderful people of all walks of life from all corners of the earth each Monday morning. My last guests on Tweetchat were the editors of Thinking Person’s Guide to Autism: Everything You Need to Know from Autistics, Parents, and Professionals. It really made my last Tweetchat a memorable one… giving meaning to the expression “Going Out with a BANG!”
My guests were Emily Willingham, Shannon Des Roches Rosa, Jennifer Byde Myers, Liz Ditz, and Carol Greenburg. Some have children who had to get ready for school or had other commitments, but they made it happen. The five were ready, punctual, and quick at tweeting their tips and links so other parents have an easier time raising a child with autism or other special needs.
- Shannon Des Roches Rosa is the Senior Editor who came up with TPGA idea. She manages day-to-day work on their site and has an 11 year old son with intense autism.
- Jennifer Byde Myers is the chief technology officer (CTO) who made the book happen, manuscript-wise. She has an 11 year old son has intense autism and cerebral palsy.
- Liz Ditz is the education professional and advocate. She is really great in social media.
- Emily Willingham is the Science Editor and she has a ten-year-old son with intense autism.
- Carol Greenburg who is a self-advocate, a Special Education Advocate and an autism parent of a nine-year-old son with intense autism.
Our topic was: “How to be Smart about Evaluating Autism Information and Approaches.” Thinking Person’s Guide to Autism (TPGA) is their book and also their amazing website with regularly updated autism essays, resources, and other information from autistics, parents, and professionals. Motivated to better the world for their children and better prepare their children for the world, these hard working individuals are making your life better and easier too. You will find them on Facebook and Twitter. Follow them! On their page I read, “Autism misinformation clouds and is perpetuated by the Internet. We want to make accurate information about autism causation and therapies visible, accessible, and centralized… Our families need their energies for evidence-based optimism!”
The following are tweets from my last Tweetchat. I have sifted through them to put them under various headings. Like their book and their web site you will find positive, evidence-based autism information and advice. Remember the character limit all are under because we were on Twitter.
How to be Smart about
Evaluating Autism Information and Approaches
An excerpt from an essay in TPGA, Autism and Biomed Protocols: A Primer on Pseudoscience by Emily Willingham and Kim Wombles ~ “Understanding what constitutes pseudoscience versus true science or scientific practice will help you avoid a number of biomed pitfalls. What has not been demonstrated in any way—and could not be, even if we moved Heaven and Earth to do so—is that these peddled protocols, along with affiliated books and pills, have any effect whatsoever. All they ultimately do is take money from the pockets of parents desperate to do something for the children they love.”
Chasing false hope waste both valuable family time and money… and saps parents’ energy!
Thinking Person’s Guide to Autism (TPGA) was written by folks who see their “glass half full” and many overwhelmed parents need to know there is hope. First piece of advice is to buy TPGA book. It is a reliable source that you can use at your own pace focusing on your priorities. Start with good information from TPGA. In their book and on their site you will find many resources.
You’ll get advice from other sources, some good some bad. That advice doesn’t have a filter, so you must filter it yourself. Remember if someone offers you “amazing” cure-all and promises things “no one else knows,” be very, very skeptical! On evaluating autism information, “Take a deep breath before you jump onto any bandwagon, and make sure it’s going where you want to go!” Some people prey on autistics and on autism families. If something sounds too good to be true, it probably is. Be cautious.
It’s also really important to beware of anecdotes. Even the most heartfelt and impassioned anecdotes do not outweigh the science. If it’s possible, start by putting emotions aside so you can evaluate information and follow the best course.
This one low-tech parent’s tool, a daily record, will help you evaluate interventions for autism and it was explained in their book by Shannon Des Roches Rosa in her essay, “Does Your Child with Autism Have a Daily Record?”
First piece of advice is to buy TPGA book. It is a reliable source that you can use at your own pace focusing on your priorities. Start with good information from TPGA. In their book and on their site you will find many resources. – “It’s our TPGA Mission: Our belief is that all autism approaches should mirror the physicians’ credo “First, do no harm.” But how do you determine when benefits outweigh potential damage? The pseudoscience so often promoted as “autism treatments” has a handful of consistent identifying characteristics. Read misson.
From JoyMama at TPGA you will find a framework for evaluating autism interventions like in this essay, “When a Mom Says Something Works: The GFCF Diet
Understanding what constitutes pseudoscience vs. true science or scientific practice will help you avoid biomed pitfalls. Differentiating Between Real Science and Fake Science
Read about “biomedical” protocols (Cutler, Yasko, & Bioset) . They were analyzed and found wanting in science and evidence as explained in this essay Autism and Biomed Protocols: A Primer on Pseudoscience
- The Cutler Protocol, created by research chemist Andy Cutler, is based on the premise that autism is mercury poisoning — which can be cured by Cutler’s specially timed chelation system.
- The Yasko Protocol (www.dramyyasko.com ) is a costly protocol sold by Amy Yasko, who has determined that something called the “methylation cycle” can have defects that contribute to a whole host of diseases and disorders (pseudoscience alert!), and autism is one of these disorders.
- The Bioset Protocol is sometimes recommended by DAN! (Defeat Autism Now!) doctors as a supplementary treatment for food intolerance or allergies. It was originated by Dr. Ellen Cutler who promises that her “system” will help the buyer with a laundry list of ills, ranging from herpes to migraines to “childhood illnesses or recurring infections.”
It’s easy to be swayed by popular opinion and guilt. Jennifer Byde Myers wrote When Medication Is the Right Choice, regarding going through the process with medications
What to Ask of an Occupational Therapist Great information on what an OT can do for your autism family.
Where To Find Information on Autism
- The team at TPGA publishes the very best autism information several times each week at our TPGA website. We want to help people fast-forward past all the autism pseudoscience so they can start *supporting* their autistic child. Yes, so many parents waste time looking for cause/cure instead of dealing with the NOW let’s move forward.
- We also provide social media community so *you* can ask us questions directly:
- Judy McCrary-Koeppen @sageslp has some great information on picky eaters.
- Non-US resources Research Autism: UK charity exclusively dedicated to research into interventions in autism.
- Also Mike Stanton’s “What Is Neurodiversity” is mandatory regarding respect and rights for all autistic people.
Help Learning for a USA Driving Permit
This site, drivingoffice.com, is a perfect complement to a driver’s education course. Find all the information you’ll need to pass the driver’s test and get your license. This is your one-stop driving education resource to help you prepare for the driver’s license application:
Find your local DMV office and practice the driver’s test.
Finding a Reliable Therapist
To check therapists’ credentials there is a new site called MyAutismTeam that is like Yelp for autism professionals @MyAutismTeam. Also check the professionals’ background online! Checking credentials is not too hard. Are the schools they went to a consistent source of independently verified research? Make sure those credentials are from widely known and acknowledged institutions, and then have a chat with the person in question. Instead of going strictly by the length of the string of letters after a therapist’s name, verify that s/he has the credentials he claims.
From MyAutismTeam site we learn, “ MyAutismTeam gives you the easiest way to find the best providers who can help your child thrive. Share with other parents like you, and learn from their experience. We’re still in the early stages of MyAutismTeam, and have already pre-populated our searchable database with over 30,000 providers from our growing list of partners like Autism Speaks, Easter Seals and Parents Helping Parents.”
From @swalton47 at TPGA Getting to Know Your New Neighborhood: Reaching Out and Building a Network Great post for parents building their autism treatment and support team.
Read Kate Ahern’s essay on Living the Least Dangerous Assumption and presuming competence. An excerpt, “The issue, sadly, sometimes becomes that making the least dangerous assumption and thus presuming competence uses resources (time, money, energy). We must come to understand that refusing to presume competence is, in the long run, more costly than making that least dangerous assumption.”
What a Great Speech-Language Pathologist Can Do for Your Child With Autism by Jordan Sadler, MS, CCC-SLP
About the Book, Thinking Person’s Guide to Autism
We created our TPGA book to be a one-stop autism guide for anyone new to autism, whether a parent, self-advocate, professional. For our book, we gathered more than fifty autism experts – parents, professionals, self-advocates – giving you the BEST possible information. Our TPGA book is not just informational but conversational and accessible. It is like talking to wise friends.
Where to Buy Thinking Person’s Guide to Autism: Everything You Need to Know from Autistics, Parents, and Professionals – Nov 28 2011 – Profits from sales of the Thinking Person’s Guide to Autism book go straight back to the community. They currently plan to donate the proceeds. Createspace Amazon.com Amazon.ca