Hindsight and the evolution of ASD treatment and recovery

 

hindsight

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:

 

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

Holly and Max

11 Comments Add yours

  1. Love this article, Holly! Thanks for writing it. My son is 13 so I really related to it. Thanks for all you do helping families and for sharing your story!! ❤

  2. michelle says:

    Love….. And you are so right. My family was so so lucky on so many things. Timing, financially, born in another country ….. the information was there when I looked for it. There is a fantastic biomed doctor 15 minutes from us!!!….. but really so much success bc of the many moms who braved the storm before us. Great article Holly. ♥♥

  3. jafcfu says:

    Beautifully written. It is the truth. and Thank you.

  4. Thank you Holly for all your hard work. You are a bright spot in the autism community and are adored. Thank you.

  5. Haley says:

    Such a great chronolgy of scientific and medical discovery, that only happened because moms like you guys didn’t give up and didnt let up the pressure. Thank you – because of you, my son is doing really well.

  6. tuffmom says:

    Thanks for this, Holly. I’m on a mission to rid my Jack of his pain, this year, more than I ever have been in the past. He’s 10. I’ll NEVER stop trying and learning. But I wonder what age is the age when the sand in the hour glass starts running out faster? I’m thinking it’s my sons’ age- 10? Whatever the case, I’m pulling out all the stops, this year. I’ve learned so much from you already and continue to do so. You truly are one of my biggest inspirations.

  7. Lara Ocasio says:

    So much truth, so much sensibility thank you Lisa for sharing these words for yours were the first I read in the dark hours following my 24 month old’s diagnosis. I followed so much of what you said, read everything I could get my hands on, found a doctor, started biomedical treatments, went GFCFSF and this boy is healing everyday. We are a few months shy of his 5th birthday and the improvement is miraculous. Thank you, thank you, thank you for sharing and getting this good word out. If one terrified parent of a newly diagnosed child reads this today and gets on the right path, I will have helped this cause too.

  8. Jamie says:

    Holly, you are amazing! Your story is amazing, your family is amazing and you continue to inspire us every month. Thank you so much for sharing your story and giving so much back to us. You continue to give — month after month. Our 10 yo is doing great because of what we’ve learned thry TACA, but puberty is coming for us – it’s comforting to know that you and so many other awesome TACA moms have already been there. There is no finish line…

  9. Cel Ree says:

    Amazing. As always, there is a TACA article to inspire, motivate, and accelerate. Thank you, Holly. My son (and myself) have made giant leaps with your support and knowledge. Your work and trail blazing is admired and respected at our house. WWHD?

  10. Laura says:

    Reblogged this on The Diet Diaries and commented:
    As my family is currently going through dietary changes and trying to recover Logan from autism, I know how hard it is, and I can’t imagine how much harder it must have been 15 years ago! A big thank you to Lisa and the other parents who did help pave the way–your stories inspire us to keep going!

  11. Nikki says:

    Thanks. Love this as I can relate. In this over 12 years with my child and still going…time is fleeting….

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