By Anne Dachel
I recently got to know a tremendous activist in the autism community, Marcia Hinds. She’s the author of the book, I Know You're in There: Winning Our War Against Autism, published in January, 2020.
Ryan’s mom just wants all kids to have what her son now that’s why all profits from the book go to autism treatments/research and Marcia never charges for helping families. Once it becomes common knowledge that autism is the result of a dysfunctional immune system and is TREATABLE more answers and research will come.
Preview Ryan’s recovery story on Amazon or Marcia’s website. Check out this 90 sec clip from the documentary Restoring Balance: Autism Recovery that shows Marcia’s son before and after interventions. (watch here)
I talked to Marcia on Skype so everyone can hear her story and know we should never give up on our kids. This is her account of successfully recovering her son Ryan from autism.
I asked Marcia about her son Ryan and how she became involved in autism advocacy
Marcia: “Hearing that your child has autism is kind of terrifying. I don’t want any other parent to feel as terrified as I did. Ryan, he was very serious. In the beginning all he wanted to do—he had this little portable radio, and he would take it to every outlet and plug it in and out, over and over and over again.
“And when he wasn’t doing that, he was turning off and on all the faucets.
“He couldn’t speak. When he entered kindergarten, he was in the third percentile for speech, and had no functional speech at all.
“I was told there was nothing I could do, he’d never get better, and you might as well hang it up.
“The person who diagnosed him said to me, ‘There’s no hope. There’s nothing you can do. This kid’s not going to be okay. Most of these kids end up in an institution or in jail.’ That’s how she finished us off when she told us about his autism.
“I couldn’t believe—because he was diagnosed when he was almost four—that she gave my son a life sentence at that moment. That is so wrong. It is so wrong.”
Marcia talked about how the medical community fails to address the biomedical issues in autism, and how she was left on her own to help recover her son
“I think that the medical profession still believes what they learned in medical school when they got Autism 101—that autism is a developmental disorder and there’s nothing you can do.
“It’s kind of interesting because my son only began to make significant progress after we abandoned the idea that this was a developmental or psychiatric disorder and started to treat his broken immune system.
“What’s wrong with our kids is that they have too many stressors on their immune systems, and it’s not just one thing that causes it, it’s multiple things. And that’s what makes it so hard to treat because you have to treat all the little things that our wrong with their bodies. Once you do that, that’s when they can start to learn what they couldn’t before.
“Let me give you an example: when my son was little he used to bite and squeeze his older sister—she was three years older than him—until she cried.
“And she’d say to me, ‘Mom, can I hit him?’—and I’d say to her, ‘Meg, when he’s better, you can hit him.’
“It’s still a big joke between them today because whenever he ticks her off, she hauls off and just slugs him. Then they both start laughing.
“No matter what I did, I could not teach this kid to not hit, or bite, or squeeze his older sister.
“You have to understand [that] my husband and I as undergraduates, before we had Ryan, we were both behavior therapists under Dr, Ivar Lovaas at UCLA. We knew how to do this, but we still couldn’t get him to not do it. It wasn’t until we started medical treatment… The medical term is a dysfunctional immune system. I call it a messed up immune system.
“Maybe if we started calling it that, the doctors would start doing the research and our kids would get the medical treatment they need and deserve.
“Today Ryan works as an aerospace engineer. He has good friends, and he leads a typical life. After Ryan was first diagnosed, the experts said he would need to be institutionalized one day. That is so devastating to a parent.
“They just don’t get it. They really don’t get it. It took me some time to realize that the real truth about autism is that once you help them medically, that’s when they’re able to learn what they couldn’t before.
“Now if we’d just done the medical without the behavioral and the educational, Ryan wouldn’t be okay. If we had just done the ABA without the medical piece, Ryan wouldn’t be okay. It takes all of it together. The medical makes it so they can learn; the behavioral and educational catches them up everything they missed.
“A lot of parents have this feeling like, ‘Oh my God, if my kid could just talk, everything would be okay.’ That’s not true. You have to remember it takes a normal child three years to learn speech when they don’t have anything wrong with their body. So if you’re using speech to see if the medical’s working, that’s not a good indicator.
“Sometimes what our kids do is they pick up where they left off. For my son, he probably stopped developing about age two. Then we started the medical treatments…he was about five. And once he started to develop again, he started to develop as a two year old. Two year old behavior doesn’t look so good on a five year old. It looked like he was getting worse when he was actually getting better.
“Our kids are so hard to understand. In this book that I wrote called I Know You’re in There: Winning Our War Against Autism --it was a war. It took everything I had to keep going, and sometimes I’d wake up, and I had nothing left. I’d work with the kid all day long—back then we didn’t even have Internet—so there was nothing out there to help us.
“I would work with Ryan all day long and I’d stay up all night reading. My husband looked at me, and he’d say, ‘You can’t do this,’ and I’d say to him, ‘I have to. There’s nobody else who’s going to.’
“Sometimes parents wait for someone else to do this for you. No one is going to do this for you. Nobody wants your job.
“This is the hardest thing I have ever done, and it is so worth it, because today, Ryan is incredible.”
“I read a book called, Let Me Hear Your Voice, by Catherine Maurice. It was the only book way back then that had anything positive to say about autism. The first piece of help that I got was from Dr. Bernard Rimland. I called that Autism Research Institute, and he answered the phone himself. I had no idea who he was because I was very green.
“I should have been really impressed, but I wasn’t because I didn’t know who he was. He seemed like a nice old man who was trying to help me.
“He said to me, ‘Does Ryan do a lot of dairy?’ and I said, ‘Yeah.’ And he goes, ‘Why don’t you try taking dairy away for a week and then give him a glass of milk and see what happens.’
“I was the kind of mom who gave my kids Fun Fruits for breakfast. I wasn’t into nutrition at all. We had pizza all the time. If he had said to me, ‘You need to go on a nondairy diet,’ I would have said, ‘Okay,’ and not have done it. But the way he said it, because I was so desperate, and he was so kind, I tried it. I took him off dairy for a week, and the change in that kid was phenomenal. And after I did that, I never did give him that glass of milk because all of a sudden he was more tuned in, there were less noises, less stimming, he was just so much better.
“But that was only one piece of it. There were so many other things we had to do. This is not an easy fix. There is not magic bullet out there, and I know that’s what we’re looking for as parents. You’ve got to do all the little things together to make them better so they can learn.
“I want parents to realize [that] the best piece of advice I ever got was from the woman who wrote the book, Let Me Hear Your Voice, and that was Catherine Maurice. She told me, ‘You have to use what your kids love to teach them.’
“Basically we did a modified ABA program. Every lesson that I taught Ryan…contained something that he loved or mostly obsessed over. That meant every lesson had elevators, keys, locks, cars, computers, light switches.
“The way my husband would get Ryan out of the house without me is he would say, ‘Ryan, do you want to go to the hardware store and look at the plugs and the switches?’
“And they’d go to the hardware store, and then they’d plug all the switches together, and when no one was looking, they’d sneak out of the store.
“That’s what it took in order to connect and make Ryan join our world. I always say that you have to make them join up to your world and not change the world for them. To do that we used what Ryan loved.
“Sometimes we just wanted to scream because he talked about the same thing over and over and over again. He wanted friends, but he didn’t know how to do it. He’d go up to kids, and he’d poke ‘em and poke ‘em and poke ‘em. Eventually the social skills came, but that was the last thing to come and the hardest thing to teach.
“And it’s all in [my] book [I Know You’re in There]. The book is the roadmap to what we did to help Ryan. In there I talk about all the mistakes I made because I don’t want parents to waste any time and make the same stupid mistakes that I did. I tried a lot of crazy things. When you’re desperate, you’ll do anything to help your kid.
“I just hope that parents remember that and use what they love to teach them.
“The one mistake that I never made was to give up. I made a lot of mistakes, but I kept putting one foot in front of the other no matter how hard it got. When I got too tired to keep going, I would imagine that day in the psychiatrist office who first gave us that diagnosis, and I would get mad all over again. That anger kept me going when I had nothing else.
It was through the one-on-one work that things improved for Ryan
“Ryan got speech thirty minutes, twice a week. It wouldn’t have been enough if that’s all we had done. I was really lucky in that the speech teachers did ABA naturally. They were just good teachers. They used what my son loved to motivate him and to teacher him.
“I would borrow their noun cards that had pictures of different things…All those materials were so expensive and you use them for about a week.
“They would let me borrow them, and I would take out three pictures. I would have a picture of a house, and I would have a picture of a car, and I would have a picture of a pencil. I’d put them in front of me. I would say, ‘Car,’ and I’d make him say, car. I’d say ‘house,’ and I’d make him say, house, and I’d make him say, pencil.
“Then I’d say to him, ‘Ryan, close your eyes.’ …and I’d grab one of the cards and I’d say, ‘What’s missing?’ and he would have to tell me which card was missing. Then he got to be the teacher, and he’d do the same thing. And every time he got one right, he got a puzzle piece. Ryan loved puzzles, and when he had all the puzzle pieces, he got to put the puzzle together.
“That was the way I used what he loved to teach him.
“Sometimes with our kids it’s hard to figure out what motivates them, but there are things that motivate them. A lot of times it’s just they want everything to stay the same. The sameness motivates them.
“When we would work together, we’d go into the playroom, and we had a whiteboard. He would pick an activity and I would pick an activity. We’d write it all down on the whiteboard, so he knew what was coming when. And when we finished one, he’d come and erase it. So we used all those things to motivate him.
What’s really wrong with our kids
“I don’t think any of our kids have what we refer to as autism. I always call it, autoimmune encephalitis. The reason I know that is because when Ryan was about five years old, he went to Harbor General, UCLA, and he was given something called a NEUROspect.
“That’s a big, fancy test that measure blood flow to different areas of the brain. The interesting part of doing that test was, the doctor who read it, who had never met my son, wrote, autism, question mark. question mark, question mark.
“If this was really a developmental or psychiatric disorder, how would he know by the blood flow in my son’s brain that he had autism?
“The inflammation in his brain kept different areas from getting the blood flow that they needed.
“When Ryan was about seven, maybe two, three years later, we repeated that same test. What happened was, the blood flow to the different areas of his brain was much improved and so was my son.
“That is proof that this is not really autism, but it’s really his autoimmune encephalitis.”
Email firstname.lastname@example.org with your location for help finding the right doctor or her email that has the interventions that helped Ryan the most.