Frequently Asked Questions

1How did you toilet train your child with autism?
Marcia says: Toilet training is a challenge when your kid has autism. Most parents struggle with this. It is a good thing I had Megan first or I might not have known what to do with Ryan. I used the same methods to potty train my son as I had with my “typical” daughter. First we read books together and watched videos about “the potty” long before we ever started the formal training. When Ryan was young, he never even hinted that he was ready to be toilet trained like Megan had. I woke up one day and just decided this was the day we would start. He was three and a half. We jumped in the car and went to Target. I made a big deal out of picking out stickers. One kind of sticker was for “Pee Pee” and one for “Poopie.” We also picked out “big boy” underpants with things he liked on them. He acted uninterested in all of this hoopla and seemed oblivious to all my actions. He really wasn’t, he just couldn’t show me yet that he cared. I taped a piece of construction paper on the wall of the bathroom with masking tape (nothing fancy). This was for putting the stickers on when he used the toilet. I worried that he might never do that. But I didn’t know anything else to do. We stayed home for two days. I put him in the underpants. (I didn’t use pull-ups since our kids hate the feeling of being wet.) We continued to read potty books and talk about peeing on the toilet. We talked about how proud Grandma would be if he peed in the toilet. My needs reminded me to put him on the toilet. I sat him on the potty after he watched me and every time I used the bathroom. The first time he did it, we danced around the house, called Dad, and were singing with delight this stupid song that our family always sings when something great happens. Within two days, he was trained for daytime. I didn’t even attempt nighttime until he woke up dry. That’s when I yanked off the diaper and put him on the toilet. If you wait for signs, it may never happen. Part of the problem is our kids don’t know how to show you that they care. But they do. I never knew if he understood anything I said because he never showed me he was listening by looking at me or some other form of nonverbal communication. This affects language development also. Sometimes parents stop talking to their kids because they get no feedback, a smile or clue they are hearing us. The hardest thing I ever did was to keep talking to a kid that was unresponsive. It wasn’t until he was older that I realized he was listening, but hadn’t yet learned how to respond or show me he was listening. Hope this helps. Ryan is now an aerospace engineer. I was told he would need to be in a group home. So don’t believe all you are told about autism. And never give up until you find the answers to help your child! Autism is TREATABLE!
2Should I tell other people my child has autism
Marcia thinks As for explaining your son’s autism to the other people or his classmates, I didn’t do it. Only our family members, Gina our babysitter, Pam our behavior therapist, and very close friends knew about Ryan’s autism. It might have been easier for me to explain his bizarre behavior by revealing he had autism. But it would not have been what was best for Ryan. I never explained his odd behavior by telling anyone his diagnosis, especially the people who worked with him. I learned early on that when we told people about the “A-word,” they lowered their expectations for my son. I once confided in Ryan’s piano teacher. After that, his music lessons were never the same. I had to stop the lessons because his teacher didn’t think he was capable of learning and let him do whatever he wanted. In the second grade Ryan was placed in a class where the teacher had a special ed. credential. She knew what autism was and knew our kids could never recover. That year his teacher was just a little too accepting of “his disability” and wanted him to be the best little autistic boy he could be. Empathy and understanding was not what my son needed. He needed someone to expect him to do things the same as everyone else and make him conform. The “A” word has a negative connotation. I hope one day that will change when it finally becomes accepted that this is a medical condition and kids can get better. But until that happens, I wouldn’t share. That being said, we need to tell people something so they know we are aware there is a problem and it was being addressed. This is explanation I used, “Ryan’s immune system wasn’t working properly. We are seeing a doctor who is really helping him and working hard to catch him up on all the things he missed.”
3Ryan, what bothers you most about having once been on the autism spectrum?
Ryan says: The one thing that still bothers me about being on the spectrum is that I’m still dependent on medications to make my immune system work properly. I long for the day when someone invents the thing the world can’t live without…a cure for autism. Some of my old, abnormal behaviors are kind of like volcanoes. Now they are mostly dormant, but will sometimes erupt when I forget to take my medicine or don’t watch my diet carefully enough. But they never come back in full force or look the same as they used to. I am no longer considered to be on the autism spectrum, maybe just a little nerdy. The good news is that nerdy is “IN” and in the engineering field; smart and nerdy is almost expected. One of my bosses recently told me I have great people skills. My mom and I had a good laugh over that one. But I guess in comparison to some engineers, maybe I do.
4If this really isn't a psychiatric or developmental disorder, why don't more doctors know how to treat it?
Marcia says: According to Dr. Martha Herbert and the book The Autism Revolution, “Autism is not a hardwired impairment programmed into a child’s genes and destined to remain fixed forever, as we’re often told. It [sometimes] feels like it’s an out- of -control situation to doctors. I think most doctors don’t really have an understanding if they’re not specializing in it [autism]. They don’t hear about the advances in the science and they have no reason to think that this could have anything to do with what they conceive of as a devastating, lifelong, inborn brain error.” The simplified medical explanation and the way I understand it is that some children with autism have immune systems that work overtime and produce too many disease fighters for too long; while at other times their systems do not produce enough. This results in some children having chronic infections and viruses while others have overactive immune systems and don’t appear sick at all. For others, it is a combination of factors. It is a very complex medical problem and is not easily treated. And it is difficult to know if the medical treatment is working because many afflicted have limited speech.
5Why don't more kids recover? Why there isn't one way or protocol for a doctor to use to help more kids have improved health?
Marcia says: Autism is a complicated condition. There are some children with medical problems too severe for anyone to fix, although most improve with treatment. I ache for the parents whose children have not gotten better. These are the parents work hard at this, do the medical and behavioral interventions, and yet their children’s immune systems are just too compromised. No single approach is going to fix all children. The cause of a child’s autism symptoms is not always the same. As a result, their medical condition and recovery are different. If the answers were simple, autism would have been cured a long time ago. I always thought of our children as the canaries in the coal mines. They are the first to succumb to the over abundance of stressors in our environment. And some immune systems are less able to fight off the stress put on them. There may even be a genetic component to this. A few things I think help the immune system hit overload are untreated viruses, allergies, the overuse of antibiotics, and the chemicals added to our food supply. I am not against vaccines. But I believe too many vaccines given at once, and at too young an age, can also overtax a weakened system. If you think about it, each autism organization (Autism Speaks, NIDS, DAN, TACA, etal.) has a small piece of the puzzle. But there is not one answer or any magic bullet that will help all children. Dr. Herbert confirmed my “canary” theory when she said, “…My observations and hundreds of stories I’ve heard lead me to believe that what we see as autism often emerges or worsens after a series of challenges to a young body and brain. These might include environmental factors like air pollution, viruses…they might be the food we eat, the water we drink or the stresses of daily life. Or maybe all those things together. For some reason, which we may never fully understand, in some young children all these strains and burdens of everyday life get too heavy. Instead of bouncing back,…these young bodies are pushed over the edge… And at some point the Total Load of these problems reaches a tipping point.” We must stop the infighting among different autism groups about what causes this and join forces to help our children. Our message and mantra needs to be AUTISM IS MEDICAL and OUR KIDS NEED TREATMENT. If all autism groups could agree on this message and join together; we would be an army that can’t be stopped! After getting your child well, you still need to do an intensive rehabilitation piece like ABA. Our children need some kind of direct instruction to catch up on what they missed. This is difficult part for parents to coordinate. Some find it easier to pretend their kid will outgrow these symptoms, or some never try and assume it is just hopeless. Still others don’t start medical treatment until their kids are older, because their pediatrician still believes this is a developmental disorder where nothing can be done. They might not learn about the medical piece until their child is older. Treatment often is more effective the earlier it is started, before there is further damage to a child’s immune system. It is important to take charge of your child’s health and rehabilitation. You need to think for yourself and face this disease head on. You know your kid best and need to assemble an effective team of medical professionals and educators to help you survive the diagnosis. You child cannot do this on their own. Your pediatrician and even many “autism experts” do not understand the medical enough to be helpful. We all have a responsibility to make children better. Did I stay on my soapbox and ramble on too long? Are you still awake?
6It has been a year since we started the medical treatment and I'm worried my son will never have speech. Why isn't he talking yet?
Marcia says: Even if your child’s immune system starts working, you still have to teach him the language he missed. Think how long it takes for a normal toddler without any medical issues to learn to speak (usually about three years). In time and with practice, even our children learn to talk naturally with all the slang expressions, confusing idioms, and even a curse word thrown in now and then. At first our children’s speech is neither spontaneous nor natural. It is robotic and flat sounding. Parents often think their kids will start talking in complete sentences after starting medical treatment, but that just isn’t true. Even though they now have the capability to learn speech, it doesn’t happen without some kind of an intensive language program. If you think about it, that makes sense. For kids with autism, English is almost like a foreign language. It took me more than three years sitting in a Spanish class before I could put together a sentence that wasn’t one of the set phrases in the textbook. It is the same with children with autism. When you learn another language; first you listen, then you understand, but still can’t speak for quite some time. I worked with my son from morning to night to increase his language and speech. We did it when we were cruising the supermarket aisles or on the swings in the park. I read to him, we watched educational TV shows like Sesame Street, Mr. Rogers, and Doug together. I provided computer programs that helped resolve some of his speech issues. Computer was his thing and I used what he loved to motivate him. I wish the iPad had been around then. It has so many programs that are great for our kids. This is an awesome video from a 60 Minutes TV segment that shows how nonverbal autistic kids are much more intelligent than previously thought. They show them communicating with an iPad. But as moms we already knew that. Most of our kids have above average intelligence and some are at genius levels. They are often thought to be of lower intelligence or even retarded simply because they can’t communicate. Check out this link: http://www.cbsnews.com/video/watch/?id=7385402n You need to force the kid that’s hiding to come out. I talked to Ryan all the time even though he never responded. The hardest part was to keep talking to a kid who gave me no indication one way or another that he noticed me or anything I was doing. It was only several years later that I knew he was hearing me and learning. It didn’t matter that he never smiled, looked at me, or acted like he heard me at all. Despite all indications, he was learning.
7This is how one mom answered the question on the NIDS list about how to use the iPad to teach speech:
My son was older when he first got an iPad. The programs most effective with your daughter will not be the same ones I used. Each program’s merits depend on the child’s developmental level, their interests, and your goals. What works for each individual child can be very different. I would begin by getting the application for the iPad called Autism Apps. This contains numerous programs that help our children learn the speech they never learned. For a younger child with minimal language skills, you might want to use the flashcards and game section to increase speech. My son liked the flashcards where the words were spelled out even though he couldn’t read yet. He loved anything to do with letters. Some kids with autism can read before they even speak. We had different games we played with the cards. I’d get my son to say the word. When he tried to say anything, I rewarded him with praise, high fives, tickles, or even a bit of a treat. In the beginning, treats were used as the motivation to talk. This was so hard for him. When you have a child that perhaps can talk, but who doesn’t want to; you need to use whatever it takes to get them started. After the learning becomes fun and rewarding, they progress even faster and the treats can be faded out. Now at 14, sometimes my son doesn’t want to stop talking. But that is okay with me. I taught my son to read early by first learning the alphabet sounds and next learning how to connect them into words. Learning to read actually helped my son’s speech development. There is an application on the iPad called ConversationBuilder or ConversationBuilder Deluxe that was one of our favorites. With this application, a child is asked a question from a picture of another child. Your child picks out the correct response and records her voice. You can set it to vary the number of turns given. Another book that was really helpful to encourage language, meaningful play, and reduce stims was Shira Richman’s “Raising a Child with Autism-A Parent’s Guide to Behavior Analysis for Parents.” For those who don’t like ABA, don’t let the title fool you. It is a very practical book, easy to read, and very helpful. As moms sometimes we are guilty of wanting help our kids a little too much. When my son was younger, I understood what he wanted and needed without him saying a word. As a result he never had to ask for anything. I thought I was just being a good mom, but by being so attentive I wasn’t really helping. Why should he speak if he doesn’t need to? Try this, put things your child wants like treats, foods, or games just out of reach, but within eyesight. The goal is to get your child to point or tell you what she wants. Initially, you might have to model how to do this. If she reaches for what she wants, or even attempts to make a sound, reward her immediately by giving it to her and praising her efforts. At first you reward any behavior that comes close to resembling what you want. Then over time expect more before the reward or item is given to her. Shira Richman’s book has much more detailed explanation and suggestion on how to shape behavior. I also found a few great things on Facebook under “Technology in Education.” These worked for my son and I hope they help your daughter.
8What should I do if the health insurance company denies ABA
What should I do if my health insurance company denies ABA for my son? Marcia says that, insurance companies are kind of like our kids, you have to outlast them to win! Tammy Renaud, MA, OTR from Bocalan, Texas the following great response to this question: As an Occupational Therapist (OT) I have to fight these battles all too frequently. I may have some insight for you on how I handle these denials that you can apply. First of all, insurance companies are hoping that most people will ignore the denial and not refute it…..so it always pays to appeal. Second….as you’re doing your appeal make sure you notify your state representative. Often times we have found that a well-placed letter to our representatives have helped encourage insurance coverage for claims they previously approved. Now down to what the insurance company says is not medically necessary. That’s their new big catch phrase. If your child is being seen by a neurologist or primary care who has authorized the treatment that is the beginning of medically necessary. Get whomever prescribed the treatment to write a letter. Ask them to be specific about your child’s medical case, including any specific testing findings they have. That is your first line of defense. Second ask for reports from any other therapies your child receives and have those include how the child’s behavior impacts their functional performance in daily activities. This will be key!!! If the child cannot focus because of behavior have a professional state that. Attention to task is necessary for learning and if there are reasons, balance, decreased core stability, etc. that are impacting their ability to focus….and this is reflected in inappropriate behavior, it’s medically necessary to treat both. Be careful of having therapists use sensory integration terminology. Although we know that it is real and it impacts a child’s behavior it’s another buzz word they use to deny services. A creative therapist will be able to effectively get the point across about sensory impacts without using specific terminology. We all know that sensory impacts behavior so make sure it’s in there but just carefully worded. Sensory is neurological and that IS MEDICALLY necessary. Get as many of these types of professionals to write letters to support the need for ABA for your child. This is important….make sure it is all sent in at one time because some insurances consider each letter a separate appeal process if sent at different times. Send it altogether. Then if they deny try again!!! The more we show these insurance companies they need to step up to the plate the less problems we will have overall. I sure hope this helps!! Tammy Renaud, MA, OTR Bocalan Texas Program Director “Bringing humans and animals together through animal assisted interventions”
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