Hindsight and the evolution of ASD treatment and recovery

 

By Holly Bortfeld

 

I went to the IACC meeting in Washington DC on April 8, 2014 (1) to testify in front of the committee about my family’s autism journey. I took my son with me, as I am a single parent and have never had respite care. Standing over 6 feet tall, my son is 18 years old, and terribly handsome, if I do say so myself. He sat there for 6 hours in a boring room and never made a peep. He was awesome.

 

A man who I’ve known over the internet for many years was there to testify as well. He came up to me and my son and as we were talking, he looked at me and said “He’s so, so good, what did you do? Please tell me, what did you do?” His eyes were pleading and I thought he might cry. I gave my usual joke when people compliment me about my kids “Oh, plenty of beatings. And biomedical! (2)”

 

Of course I knew about his son, 6 years older than my son and very severe, nonverbal, destructive to himself and others. I had seen video of his son before, and even just remembering it makes me cringe. It’s terrifying to be afraid of and for your child at the same time. It is heart breaking. This was his son who he loved beyond all measure and he wasn’t able to fix him, to make him safe in his own body or his world. There is grief and there is devastation. This is when they collide.

 

Working for TACA, where we talk about recovery, treatment, hope and health all day, every day, I am often asked “Well since you work for TACA, your kids must be recovered, right?” And then I have to go into the evolution of treatments and recovery, over and over again, so I thought I’d just write it down so I could send it to the next person who asks for a link to all the information.

 

When my son was diagnosed back in 1998, the gluten-free, casein-free (GFCF) diet was just coming out. There was no other diet, no chelation, no MTHFR or methylation pathways discussion, no mitochondrial treatments, no Leucovorin, no gastrointestinal (GI) treatments, no IVIG, no antifungals or antivirals, nothing that we now know to make MASSIVE improvements and lead to recovery. Basically, we were walking to school uphill in the snow, both ways.

 

The diet was in the dark ages too. There was no Udi’s breads, no coconut yogurt and ice cream, no Daiya cheese. There was something terrible called Poha, which even being a caterer with a chemistry background, I couldn’t make into anything edible. I can remember standing in the health food store for hours trying to decipher what everything was. All I had to do was stop trying to recreate the SAD (Standard American Diet) into a GFCF version of it. What I needed to do was cook whole meats, vegetables and fruits. Unprocessed whole foods are key. These are inherently GFCFSF, and they are the basis for health. I didn’t get it then, but I do now.

 

One of the first questions about the diet that I get asked is “how long do you have to keep your child on it?” Well, once you “get it”, you won’t take him or her off it. My kids have been on the diet since 1998 and short of some miracle treatment, I can’t ever foresee going off it. Whole, healthy foods are the basis for health, autism or not. We’ll keep the diet, gladly. My kids are healthy so we don’t look back.

 

Secretin (the real porcine stuff, not the useless synthetic stuff) came out shortly after we started the diet and to this day, I know more kids who drastically improved on this, including my son, than any other treatment to this day, other than chelation. But due to many “political” reasons, secretin was yanked off the market. Another year and chelation came out. So we had diet and chelation. Awesome, but like many treatments, only a tiny percentage of kids recovered from just those things. It would be another 2 years before IVIG and GI treatments hit the scene, a few more for antivirals and antifungals, and another 8 before mitochondrial and Cerebral Folate Deficiency (CFD) treatments came along. All this time, our kids were getting older, bigger, with less chance of recovery. Yes, they were getting healthier, but they weren’t recovering and maybe they never will. That’s ok, we’ve learned to value healthy and happy and we’re good with it.

While biomed does work for all ages to bring health and mitigate pain, so much damage has already occurred and for some it may be irreversible. Not in all cases, but in most, I suspect. Does that mean you don’t try? HELL NO! But it means you temper your hopes for recovery and realize that a kid who is safe in his own body is worth everything in the world.

 

The older kids didn’t get the option of the treatments young children have today. They just didn’t exist until it was too late to have a huge impact. It was too late for ours, but not too late for yours, hopefully. When that dad looked at me with those sad eyes, I recognized myself when I see parents with little tiny kids just diagnosed, and what I’d give to know what we know now and be able to give it to my kid. I’d move heaven and earth to have that chance. Just like that dad would.

For 16 years I’ve worked with many families, some were hot-to-trot on treatment, while others couldn’t be bothered. Regardless, my message is the same every time: please try. It’s every family’s choice which path they want to take and I never stand in their way. But I also make it a rule to never work harder for a family than they are willing to work for themselves. I’ve seen a lot of kids recover and that’s great but I’ve seen countless kids get drastically better, including mine, who went from very severe to moderate autism to pain-free and verbal with biomedical treatments. Even the NIH recognizes autism recovery, so I know we are making progress (3).

 

When TACA parents say “I wish I could convince this mom at speech therapy to try biomed because her kid is in so much pain but she just keeps giving him junk food and medications”, I say “Nope. You cannot convince someone who isn’t ready to learn. What you CAN do, however, is let them watch your child grow, excel, be happy and healthy and one day, as they go through the millionth hissy-fit over something seemingly insignificant, that mom will say to you “Your kid is so, so good. What did you do?” Then you have them. Tell your story. Let them decide.” I’ve seen that work more times than I can count. I then leave the door open so that these families can ask for help anytime.

 

Parents of young kids don’t know how good they have it by comparison. I, and many parents of older kids, would shove you out of a moving vehicle to be in your position – having the possibility of recovery and the tools to get it. So much has been invented for you, researched for you, the roads paved, the burden lessened. The next time you see a mom with a 20+ year old, thank them for their service and for paving the way. No doubt they helped your kid be able to get something that you will take for granted, even if it was just awareness. Appreciate these families who went first.

 

Is everything handed to you on a silver platter, all neat and tidy, wrapped up in a bow? No, not even close. You will still have to fight, claw, beg and borrow to get what you need, but there is so much now, and it works! And there is a huge community to help you. You just have to want it badly enough, and ask for help. TACA has many tools to help – local chapters, free parent mentors, our website with our “On a Budget©” series, insurance & “Who Pays for What” resources, webinars, conferences and much more (4). Ask for help and you will get it. We can help you help your child.

 

I urge all parents of younger kids to think long and hard about biomedical treatments and know that you will never get this time back. You’ll never get a chance to do it over again and pick a new path next time. Treatment works. Time is not on your side. You have the ability to get your child better now. Leave no stone unturned, do everything you can. Please spend this time wisely.

 

References

1)      IACC Broadcast of the meeting and my talk http://videocast.nih.gov/summary.asp?Live=13929&bhcp=1

2)      http://www.tacanow.org/blog/biomedical-treatments-and-autism/

3)      http://www.nih.gov/news/health/jan2013/nimh-15.htm

4)      Parent resources:

• Chapters https://www.tacanow.org/local-chapters/
• Mentors https://www.tacanow.org/about-taca/parent-mentor-program/
• Website www.tacanow.org
• “On A Budget©” series https://www.tacanow.org/family-resources/autism-on-a-budget-series/
• Insurance https://www.tacanow.org/family-resources/health-insurance-coverage-on-a-budget/
• Who pays for what https://www.tacanow.org/family-resources/who-pays-for-what-a-guide/
• Webinars https://www.tacanow.org/webinars/
• Conferences www.realhelpnowconference.org

 

Editors note: we appreciate Holly and all she does for TACA. She is truly creative, informative and helpful to families. Thank you Holly!