You had to be there.
This year I did things a little differently at AutismOne. After years of hauling myself to conferences alone, my family joined me. We made it a rail journey from Denver to Chicago. My 14 year old son triumphantly finished 8th grade the day we embarked. He played a beautiful original piano composition as part of the “continuation” ceremony at his school, collected his certificate, and celebrated with friends in the cafeteria, which was crowded with young teens balancing how to look cool (boys) or glamorous (girls) while feeling really happy. Then he boarded a city bus with his class to the University of Colorado/Boulder’s downright opulent recreation center. They had free run of the whole place – enormous indoor pool, outdoor ping pong tables, indoor racquet ball courts and much more. It was an astonishingly typical teenage scene: The girls transformed from heels and dresses to bikinis; the boys working on their swaggers, how ever they could as young bucks. A couple hours later, I collected son and hubby for a quick transit to the Amtrak station in Denver, where we cozied into a family sleeping compartment for the night. We arrived at the AutismOne conference in Chicago Friday evening, just in time for me to begin taking in some lectures and saying hello to old acquaintances before giving my own presentation on Saturday.
I’m “astonished” by this, and boasting about it, because: Without the expertise and professional support that I’ve found over the years at gatherings like AutismOne, Ben’s last day of eighth grade may have gone very differently. Nutrition, biomedical intervention tools, special diets, homeopathy, sensory integration therapy, occupational and physical therapies, IEP and legal support, auditory integration therapy, Greenspan Floortime, chelation, hippotherapy, cranial-sacral therapy, plus probably at least a dozen other things I don’t remember – and first and foremost – Ben’s incredible courage, determination, spirit, fierce wit, and intellect – have permitted a positive and successful trajectory for him. The world really is his oyster, as he enters high school. A far cry from where we all began this journey.
While I scurried to lectures, my family headed for the city to peruse museums. They mapped routes on the Metra and enjoyed a bit of Chicago. Simple joys like these are never taken for granted by families affected by autism, and they had a dim chance of being part of our lives too, in Ben’s early years. But we deferred the pediatrician’s advice back then. After his first twelve vaccine doses scrambled him into a struggle for his life, we refused any more of them, and sought helps for the inflammation, toxicity, digestive, and feeding issues that needed attention. This was stuff that his mainstream pediatric providers did not have the interest, skills, or training to help us navigate.
Well, the place was packed. Making the conference free for attendees this year was definitely a wise move (many presenters, myself included, aren’t paid and get travel costs only partly covered). Attendees crawled from booths to think tanks to lectures to the Generation Rescue “Care for the Caregivers” Lounge, which was a meeting room transformed into a blue-baubles-and-white-leather chill zone with low lights, loud music, massage therapists, and more. As always, parents filled seats in ballrooms converted to lecture halls as PhDs and MDs presented slides on complex scientific topics that years ago, would only have been seen by professional peers. The halls were not filled with curious pediatricians. They never are.
It’s striking that all these years after I first attended something like this in 1998 or so, autism conferences are still growing – and seats are still filled by parents more than garden variety pediatricians – who at this point, appear to be choosing to remain ignorant about autism recovery and vaccine injury. Many parents attending this AutismOne gathering identified themselves as first-timers. In my own presentation, a few hands went up when I asked “who is sitting here thinking ‘Oh God do I really have to do this’ special diet stuff?” but most of the 250 or so attendees at my lecture had been at this a while. In 1999, I watched Bernie Rimland ask the same thing at an autism conference in Honolulu: “How many are here for the first time?” Many hands shot up. It hasn’t changed. The numbers are rising, and the autism conference business is flourishing.
There aren’t many parents of older children at these things. They are either blessed to have steered a different course for their children, like I was, or they are placing their now adult-sized children with autism in residential care settings (if they can find one, and if they can afford it).
To young parents with recently diagnosed children: If you are wondering “…do I really have to do this alternative hoo ha biomed and special diet stuff?”, it’s your decision. But, choose to wait for your pediatrician’s guidance and approval for these integrative strategies, and your child may well become just another canary, lost in the coal mine of autism.
Can’t afford it? This year, AutismOne’s conference theme was “On A Budget”. It was live-streamed for free, and is being archived too for anyone who missed it. My own lecture covered five steps to lower cost gut health and biomedical nutrition care, including how to get insurance coverage or Medicaid, how to tap free or low cost in-home services through Early Intervention. Though I was recruited to speak about “gut on a budget”, I still learned a few things:
- A family of four can eat a GF CF SF diet for a month for $318, according to a trial completed by TACA (Talk About Curing Autism.org). Check their website to see how this was done. This is important because in my experience, families who follow the special diet together rather than just doing it for one child tend to be more successful with it.
- Some biomed doctors charge up to $450 per hour. (I charge $150 . Check my practice page to see what nutrition care can accomplish for you for less.)
- The TACA website has diagnosis and procedure codes posted, so your provider can see how to bill correctly for better coverage.
- Some of the additional costs of allergen-free foods are tax deductible.
- There is a new recipe each day on the TACA Facebook page, so you can always find ideas about something to eat.
View the archived AutismOne conference proceedings to learn more. Do all you can as early as possible for your child, and follow your intuition on what is best. Don’t wait for your doctor to tell you what do to, or for your child to agree with a diet change. See Special Needs Kids Eat Right for a section on pitfalls to avoid before you start, and how to transition your eater-of-three-foods to a kid who eats lots of foods. My wish for you is that you get to feel the same gratitude and awe that I felt for my son this past week, when the next important milestone comes along.