by Marcia Hinds – Megan and Ryan’s Mom
Finding a doctor who knows how to treat autism still remains to be one of a parent’s biggest challenges. NOT ALL DOCTORS are created equal! And finding the right one sometimes takes time. There is a shortage of doctors who know what autism really is or how to treat it. Most still mistakenly believe autism is a developmental disorder. Our physicians are just starting to learn about autism and the immune connection. But the good news is that the medical revolution has started. Our doctors are finally starting to learn that when a child’s compromised immune systems can be repaired and starts to function again, children get better. And some like my son, can even fully recover to lead “typical” lives. But there is much more work to be done, since the general public and many doctors don’t know this is even possible.
The term “autism” simply describes a collection of symptoms look different in every child. Maybe if we stopped calling it “autism” and instead referred to it as what it is “a messed up immune system” more children would get proper medical intervention.
My son, Ryan, is now an aerospace engineer because we combined medical, behavioral and educational interventions. His thoughts about medical treatment and autism are from an article he wrote for the Autism Eye Magazine:
“Some people think we should just accept autism. And that if a child is treated, it changes who that kid is. I am still the same person I was, only now I’m happy and can enjoy life. It is hard to understand that children are not receiving proper medical treatment because some people think we should celebrate autism. When doctors believe the medical issues associated with autism are just part of a ‘developmental disorder’ children are not treated for the same medical conditions as every other kid. Is that really okay?”
You can read his entire article here. https://secureservercdn.net/220.127.116.11/8b0.798.myftpupload.com/wp-content/uploads/2016/03/autism-eye.pdf . And he will make you laugh when he tells you why he thinks his mother needs a little behavior therapy.
We will change things, but that takes time. Unfortunately, time is a luxury we don’t have. Because there are too many kids NOT getting better. Our major teaching hospitals and medical schools need to get on board and train our doctors. It is starting to happen, but just not fast enough to meet the growing number of children with autism spectrum disorders (ASD). And when you include those suffering from the various forms of ADHD, ADD, and other neuro-immune conditions, even more children could be helped.
But don’t be surprised if your pediatrician looks at you funny, when you ask about medical treatments for autism. Some just don’t know about these treatments yet. And sometimes it takes more than one physician to address the multiple medical causes of the subsets of autism our children have. That is why I send a complimentary copy of my book, “I KNOW YOU’RE IN THERE – Winning Our War Against Autism” to any doctor who will read it. We desperately need their help!
The pediatrician who helped my son most, mainly used one protocol. Fortunately, what he did fit my kid and Ryan recovered. But his methods didn’t work for all children. Our kids are individuals and will respond in their own way to both medical and behavioral interventions. And some have immune systems that are extremely compromised and harder to fix. Always remember you are the expert on your child. Please don’t blindly follow what any doctor says. My kid would not have recovered if I hadn’t trusted my instincts. But then again, if I hadn’t used the antiviral and antifungal medications Ryan’s doctor prescribed, my child also wouldn’t be okay.
Autism is further complicated by the fact that medical treatment only makes it possible for our children to learn. You still need an intensive rehabilitation program that uses behavioral and educational interventions to catch our children up on all they missed when they couldn’t learn. It takes most healthy children about three years to learn speech. Sometimes when our children don’t immediately start talking in full sentences, it doesn’t mean the medical treatments aren’t working. And don’t wait for that “miracle,” because they only happen when you sweat. Warrior parents make things happen!
The search for the right doctor becomes harder when you are looking for one who will prescribe the heavy duty medications, like antifungals and antivirals, which many kids need. They were life-changing for my son. And continues to use them today to keep his immune system working properly.
What some of our most dedicated physicians don’t understand is that some children may need to use these medications long-term (for Ryan, maybe forever). Or that these drugs must be prescribed at a higher than usual dosage and rotated to remain effective.
Some people have been able to stop the pharmaceuticals when their immune systems start to function again, but as of yet, Ryan isn’t one of them.
We hate it when people judge our parenting skills because our kids have autism. But narrow thinking and only one way of looking at solving the autism issue is a problem even within our own community. Some parents believe supplements are the only acceptable option for medical intervention. If natural remedies are all that is needed, and work that’s great. The problem escalates when those remedies aren’t effective for children. That’s when parents must make the hard decisions. For Ryan, we decided we needed to take a risk and use some medications that scared me at first.
When I first read the side effects of these drugs, I was afraid to use them because of the damage they could cause to my son’s liver or kidneys. I was terrified about the long-term effects. It seemed unnatural to give a young kid these prescriptions, even though I had actively searched for that magic pill for years.
Nonetheless, I knew we had to take a chance to help Ryan have a happy life. What I didn’t understand at that time, was that using these prescription medications really was no risk at all. Blood tests every two-three months alert doctors to any potential problems before permanent damage occurs. For the nearly twenty years, Ryan has been on the antiviral and antifungal medications since he was a young child and his lab tests never indicated any problem results.
I wish back then I had understood that no decision is forever! I put a lot of pressure on myself and anguish over every medical decision. I used to think I had to get it right on the first try and didn’t understand U-turns are allowed if something isn’t working. We can stop any medication or treatment any time. In the beginning, Ryan acted so strange that even I didn’t think he could ever be “normal.” When Ryan was in middle school, my dream was that someday he could hold a job at McDonald’s and live independently. But he was still pretty affected and I wasn’t sure that would ever happen.
Recently Ryan tried to stop the antifungal medication, within two weeks he called to tell me he didn’t feel well. Ryan said he felt tired and experienced the compulsion to talk to himself out loud. He decided to go back on the meds and things returned to normal.
As a parent, it was hard to keep the pace and not give up too soon. Sometimes I felt like I was working nonstop and thought there was little improvement. We don’t always notice what our children do right. But I did always notice when Ryan did something wrong. All it takes is one good meltdown in the mall to overshadow all the things our kid did right that day. This recovery stuff is not a sprint, and is more like a marathon. I made a lot of mistakes along the way, but the one thing I did right was to keep going and never give up!
NOTE FROM MARCIA HINDS – Megan and Ryan’s mom:
Ryan became an aerospace engineer, because he received proper medical treatment combined with behavioral, and educational interventions.
Contact info for Marcia: