by Marcia Hinds – Megan and Ryan’s Mom
What if the word “Autism” had never existed and ever increasing numbers children were showing up in schools without speech, lost in their own worlds, and having unexplained seizures? Would we be diagnosing these children with some psychiatric “developmental disorder?” Or would we be looking for root causes of their symptoms and treat it medically?
Currently, we use the term “autism” to describe a set of symptoms said to be the result of a developmental disorder or a psychiatric condition. But what we refer to as “autism” is really not that at all. These children do not have developmental disorders. Instead, they have a medical condition that results from an immune system that is not functioning properly.
I long for the day when someone gives the world a “cure” for autism. But as of yet, we haven’t found it. There is no “instant cure” or “easy fix.” Trust me I searched everywhere for it. Still, children are recovering from autism and losing their diagnosis. Yet, the general public and even most of our dedicated doctors are still unaware that this is possible.
My son is now an aerospace engineer. Ryan is “recovered,” but he is definitely not “cured.” Although he leads a very “typical” life, he is still dependent on prescriptions medications to keep his immune system functioning properly. But the important part is that my son is happy, has friends, and does all those things the “experts” said could never happen. When Ryan was first diagnosed over twenty five years ago, I was told he would need to be institutionalized.
Autism is complicated and it takes many things combined to help our kids get better. Helping our kids is exhausting, overwhelming and never easy. It takes time to repair their broken and dysfunctional immune systems. You need the right doctor, doing the right things, in the right order, giving medications at the right dosage for our children to improve or fully recover. And if you haven’t seen significant changes with a physician’s protocol in six months, it may be time to move on.
After you address the medical issues, you still need an intensive rehab program to catch your child up on all he/she missed. The medical treatment only makes it “possible” for our children to learn what they couldn’t before. There are many rehab programs like Applied Behavior Analysis (ABA) Floor Time, RDI, Son Rise that all work once our kids can learn. Pick the one you like and stick with it.
Remember the longer your child has been ill, the more you will need to directly teach them before they start learning like other kids. For me, it was hard to contain my frustration when I had to teach Ryan all the things other kids just knew. I was envious of parents who had typical kids that learned on their own. Those parents had no idea just how lucky they were.
When Ryan was in middle school, my dream was that maybe someday he could hold a job at McDonalds and maybe live independently. But I wasn’t sure that was possible back then. I didn’t realize that social skills were the last thing to come and we would still be working on his social skills when he started college.
Today he works as the liaison between his aerospace company and the airlines. I never saw that one coming back when he was still severely affected by autism. You need to have amazing social skills to do his job. And yet, my son is still NOT “cured.” Ryan must take medications to keep his immune system functioning properly even today.
We are still waiting for the day that Ryan is no longer dependent on prescription medications (like antivirals and antifungals) to keep his immune system working properly. For now, he just manages his “autism.” It is more understandable if you think of what he does as a “treatment,” instead of a “cure.” It is kind of like the way a diabetic needs insulin to have a healthy, happy, and “typical” existence.
Each child has individual medical conditions that must be addressed. That is why autism is so hard to treat. It is labor intensive for our doctors. They must treat our child’s immune dysfunction, and that takes time. And our dedicated pioneers sometimes have to disregard some things they learned in medical school. And that the miraculous protocol you read about on the internet, may not be the treatment your child needs.
To make treating autism even harder, it is difficult to know if an intervention is working. Some parents think that once treated, our children will immediately start talking in full sentences. But our children have limited or no speech. It is important to remember it takes a typical kid almost three years to learn language. As a result, language acquisition can’t be the only benchmark to use to see if a protocol is working.
An intensive rehab program must be used in conjunction with the medical interventions to catch our children up on all they missed. Any program you chose works once the major medical issues have been addressed. When medical treatment is combined with rehab, that makes the rehab programs work and recovery becomes possible for those who couldn’t learn before.
There are always going to be nonbelievers and those who think our children can’t improve or fully recover. I realized a long time ago, that I can lead someone to water but I can’t make them drink. We will never change some people’s minds, no matter how hard we try. They will always have excuses about why they can’t do what needs to be done. Parents must be an active member of their children’s medical care, not just the dispenser and pocketbook. We must trust our instincts! We know our kids best and are the “experts” on our children.
Having a child with autism is overwhelming. But please don’t use being overwhelmed as an excuse to not do what your kid needs. Take it all as slow as you need to, if that’s what it takes. Small bites. The feeling of being overwhelmed will not go away—whether you do everything or nothing—so find the right doctor and do something that makes a difference for your family!
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.
To preview my book, “I Know You’re In There – winning our war against autism” click on http://a.co/a5GWrpM
Contact info for Marcia: