An Interview with Seth and Melanie Fowler: The Costs of Autism
1) First of all, could you tell our readers a bit about your child who has been diagnosed with autism?
Our son, William, is a precious child of God who is nearly seven years old and has autism. He is a very active boy. He is a happy boy. We knew very early on when he was born that something was different with William. We could just tell that he wasn’t developing as a typical child would develop. He would fixate on things as a baby—toys, fixtures, lights, fans—we thought we had a very quite, passive child at first…then our fears were confirmed when he was 2 and a half years old. He was diagnosed with autism.
Our book, Look At My Eyes (www.lookatmyeyes.com) details our struggle with marriage, therapy, insurance coverage, quackery…you name it. Needless to say, it was very hard for both of us—for all of us—and our families as we learned how to deal with having a special needs child.
At age seven, William loves to play with his dog, Charley Bear, he loves to look at books, he loves going to his school, playing with his sister—or actually just being around his sister, he really doesn’t “play” with others, he just hangs around them. Most of all, William loves to jump on his mini-trampoline. We have already gone through two over the past three years!
William doesn’t speak very well. He struggles with his pronunciation and forming multi-word sentences, but he understands very well. Whatever tests might show, he is a very smart boy. He knows what’s going on and he is pretty sneaky.
He’s a funny boy. He likes to tease in his own way and he has his quirks…he clicks his tongue and he makes all sorts of noises and squeals. He likes to tap-tap-tap things…it’s called stimming, a repetitive body movement for self-stimulation.
Most of all—he’s my boy. I am a proud father. My wife, Melanie, is a proud mother. He has his challenges and will probably always have challenges…but together, as a team, we can and will help William be the best version of himself that he can be
2) When did the diagnosis occur and who did the diagnosis?
William was diagnosed at age 2 and a half at the Child Study Center in Fort Worth, Texas. The Child Study Center provides diagnosis and treatment services to children who have, or are at risk for, developmental disabilities and related behavioral and emotional problems so that these children may achieve their full potential.
3) How old is the child now, and what are his/her current needs?
William will be 7 years old in November. He is independent in many areas. He can get himself snacks and drinks when he’s hungry or thirsty. He can get dressed by himself (although we still have to prompt him multiple times). He recently learned to tie his shoes. IF he pays attention to what we say he can respond to simple questions…”yes/no” questions. He is working on brushing his teeth. We have a “Responsibility Chart” of daily tasks that we encourage him to work on every day…little tasks like feeding the dog, taking plate to counter, being sweet to sister etc.
He needs us to keep to a routine, to encourage him and love on him, to direct him in the environment and to make sure that we put him in the best position for him to succeed. What does that mean? We need to do a lot of explaining and comforting when he finds himself in a situation where he might not understand or feel comfortable.
4) How helpful has the school system been?
William attends the Jane Justin School, which is a part of the Child Study Center in Fort Worth, TX. It is a privately funded school of about 60 children—many have autism, others have other forms of special needs. It has been a lifesaver for our family in so many ways. Not only does William get amazing teaching and therapy but we are not the odd family with the non-typical child. All the children there have some issue they’re dealing with—I can’t tell you how freeing it is to know that if my child starts “melting down” and throwing a fit on the floor I won’t get that “look” from other parents because they’ve been there and experienced similar situations. We are truly blessed to be a part of the Jane Justin School.
Before William went to Jane Justin, we did receive occupational therapy and speech therapy from the local school district. We had to fight for our services and we got them…but even then, what good does 30 minutes twice a week really do for a child that needs that kind of help?
The public school system is so lacking in terms of knowledge, funding, staff and desire to help these children on the spectrum. It’s so sad and shocking to realize that so many of these children are not receiving the attention and education they so desperately need.
If we as a society are going to rely upon the public school system to make any impact for children on the autism spectrum then we’re in big trouble. It’s not the fault of the school system or administration…the public school system (at least in Texas) is just not designed to help special needs children thrive.
5) Now, how much daily supervision does he/she require and do you receive any respite from your particular state?
William has been going to school Monday through Friday from 8:15 a.m. to 3:15 p.m. since he was three. He goes pretty much year-round to either school or some form of services/therapy that is offered at the Child Study Center.
After school he is in our care and he does pretty well…he’s not a danger to himself or others like we once were worried about. He can do basic functions like get a drink or go to the bathroom by himself. He is a happy boy. William loves to play on the monkey bars and loves to be around his 4-year-old sister, Margaret. He isn’t really into any specific kind of toy or game.
Often you find children on the spectrum so fixated on a particular toy…Legos, cars, blocks, animals…right now, at age seven, William isn’t into anything like that. When he was younger he loved to play with cars. He would line them up and organize them and would do that for hours and hours…but he really doesn’t do that anymore and it’s kind of sad.
He loves to jump on a mini-trampoline we bought him a few years ago. He pretty much jumps all the time…it’s good for him and it doesn’t really bother us anymore. It’s in our living room.
When William was younger we had to keep constant watch over him. He would go into his room and soil his diaper or his clothes on purpose and would wipe it all over his room…bed, walls, chairs, stuffed animals…whatever he could wipe it on. That really wore us out because he would sometimes do it multiple times a day. We are so grateful to God that William is not in that stage anymore.
When his sister was younger we were cautious about letting William be alone with her. We just didn’t want to have any opportunity for him to possibly hurt her. Again, we don’t worry about that anymore. William loves his sister and is very loving and gentle with her.
6) In terms of history, has anyone in your family had any history of developmental disabilities?
We don’t know of any developmental disorders in either side of our families.
7) Did you do any genetic study or testing prior to marriage?
We did not even consider genetic testing or anything prior to having our son. We truly believe that God gave us William for a purpose. To humble us, to make us stronger, to allow us to use our gifts to impact our community and beyond when it comes to understanding children on the autism spectrum.
What good would it have done had we been tested or found out that William had autism in the womb? We would not have terminated him just because he’s not “typical” in society’s standards. There are so many people in the world who have some form of autism and that are making huge contributions to society.
8) Back in the 1950’s, 1960’s and 1970’s many children with intellectual deficiency, cerebral palsy, spina bifida and other developmental and neurological problems were institutionalized. Have you ever considered this option?
It’s amazing what went on in the past. I’m sure in the 1950’s, 1960’s and 1970’s parents of special needs children felt them were doing the right thing for their child and their families…at least I hope that’s was the case. Our desire is that one day William can be self-sufficient and live on his own and have his own family. If that’s not what God has in store for William, then we will do whatever is in his best interest. If he has to live with us indefinitely, then so be it. If he is able to live in a community where he has assistance but also has a level of independence and freedom, that’d be great too.
9) The incidence of autism seems to be rising. Have you any insight into causality?
There are all sorts of textbook answers that would give a better explanation on that question. The important thing is we know his situation, we are grieving daily but we are moving forward because that’s all we can do and that’s what is best for our son. If we spend all our time being concerned on what caused our child to be this way or spending all our time and money on searching for a “cure” then we’re not doing what’s best for our child or our family.
10) Is your child on medication or does he/she have any specific medical needs or special diet (casein free?)
William takes medicine daily to help level his mood. It is a very low dosage pill that has been very helpful, he has been taking it for almost two years now. When he was younger we had him tested for gluten allergies and casein allergies but all results came back negative. We still went on a gluten free/casein free diet as a family for a while but we really didn’t see any difference and it was very expensive. We still try to eat as healthy as possible and don’t eat a lot of processed foods or sweets.
11) Sadly, and unfortunately, there seems to be a growing population of children with special needs- visually impaired, hearing impaired, intellectual deficiency, head injury, brain trauma- everywhere one looks, or reads, one sees an increase in learning disabilities and psychiatric problems. Do you have any insight into this? Is there better reporting ? Or are we more educated about special needs children?
Again, probably a million ideas and reasons. From our perspective, it’s a bit of everything you mentioned. Parents are more educated because of the Internet. We blog, we write books, we get involved. Our book has been in publication (www.lookatmyeyes.com) for over a year and we’ve sold books and met people from all over the world. We are a growing community—parents who are determined to help their special needs child in any way possible—and we are finding one another via the Internet and social media.
Maybe it’s a good thing that there seems to be a growing population of special needs children—we need to get the attention of the masses.
12) What do you consider your most pressing problem?
As William continues to grow and develop, one concern of ours is his ability to communicate. While he has improved so much since he started his school at the Child Study Center and Jane Justin School in Fort Worth, he still is very delayed in his speech and his ability to communicate.
If he continues to struggle with basic communication, it’s going to get harder and harder for him to be independent in this world. It’s one thing to be quirky and not as social as a “typical” child, but it’s totally different and so much harder when one doesn’t have the ability to communicate basic wants, needs and desires.
Another issue that keeps us up at night is the realization that, although we live in a very large area of Texas, there are not many qualified outlets for him for education past the age of 12. This is a fear and concern for just about every parent we know who have a child on the spectrum.
13) Strange question- but has OBAMA Care helped or hindered in regard to your child?
No one really understands OBAMA Care enough to know whether or not it will do anything. Some say it will help because it will cover pre-existing conditions. Others say it won’t help because it will put too much of a financial burden on companies or parents and the quality of treatment and therapy will be so poor that it won’t benefit the child at all.
What we DO know is that therapy is extremely expensive. Insurance companies do all they can to make it very difficult for children to get proper coverage (not just bare minimum in order to say they’re covering autism).
We had an 18-month legal battle with our insurance company over failure to fulfill the policy and give us the services and treatment our son was rightfully due…those are 18 months that we’ll never get back. What kind of progress could he have made in those 18 precious months? We’ll never know.
14) What have I neglected to ask?
One thing that we are trying to bring to light is the huge need in the minority communities for support for children with autism. We recently had our book, Look At My Eyes translated into Spanish because there is so little that has been written in Spanish on special needs and the autism spectrum within the Latino community.
Our desire is to reach out to the Latino community and help them realize how they can get services and insurance coverage, the importance of getting a diagnosis and how critical early intervention is for the child on the spectrum.
The studies say that 1 in 88 children are born in the United States with some form of pervasive developmental disorder (autism), but that doesn’t take into consideration all the children that are not being tested…that are not being diagnosed and are just being cast aside because people think they’re “slow” or whatever.
This isn’t an issue that is going to go away. If it’s true that 1 in 88 children are being diagnosed…then what’s that going to mean for our society as those children become adolescents, young adults and beyond? We must establish some outlets for these children to learn in a way they can understand. We must figure out a way for society to learn to understand how those with autism think, respond, process—if we don’t change then it’s going to be a pandemic of epic proportions.
If 1 in 88 children get to the tax-paying age and have little to no education, can’t earn a living wage, and society has no idea how to employ, respond or assist these 1 in 88 children…what kind of mess is that going to be? Our economy and country is already heading toward bankruptcy…and soon we’re going to be financially burdened for 1 in 88 children as a taxpayer?
We have to start NOW! This is not just a government issue. This is a society issue. A government issue. A private sector issue. A faith-based organization issue. Autism is not going away…we can’t bury our heads in the sand and hope that a miracle pill is created to make it all go away. We have to start NOW!
FINALLY…one of our goals is to get fathers of special needs children more involved. Statistics say that as many as 90% of special needs families get divorced! Think about that…90% of 1 in 88? It is crushing to see so many single-mothers having to deal with raising a child with autism. It is such a mentally and emotionally draining challenge to raise a typical child…now multiply that by a huge number and that’s what it’s like raising a child on the spectrum. Fathers are becoming more and more absent in raising these children.
One reason we wrote our book was not only to encourage, inspire and empower families dealing with life on the spectrum, but we wanted Seth to specifically write portions of the book from a father’s perspective to fathers out there. Men and women grieve differently. They respond differently. Men need to read our book and get involved with their special needs children. The sooner men and women realize it’s not about them—it’s not about their happiness or their wallet or whatever, the sooner the focus is put on the child and being the parents God has called them to be.
Please encourage your readers to check out our book, Look at My Eyes and Mirame los Ojos at www.lookatmyeyes.com and follow us on Facebook: Look At My Eyes and Twitter: @fowler4group. Proceeds from books purchased via our website are donated to the Child Study Center.