Wednesday, October 24, 2007
Jeremy
Jeremy is a fascinating man. I enjoyed visiting him and his mother Robin. They have gone through several battles in their lives. Robin is a single parent. While Robin struggles with the daily challenges of being a single parent, she has more challenges with a son who has autism. However, she says with the added struggles come added joys.
It isn't obvious to a stranger Jeremy has autism. There is so much more to him than his autism. He is extremely bright. He takes apart computers and fixes them! I could never do such a thing!
One of the most interesting parts of the interview was when I asked Jeremy what he thought about people treating and trying to recover from autism. He doesn't agree with it. He calls it ignorance and a life long disorder. I can't wait to tell you the rest of his story!
Tuesday, October 23, 2007
Kansas City--Robert
At my first meeting with Ashley, she ran over the basic premise for the series and told me to start researching something called chelation therapy and how it relates to autism. I immediately got to work looking up different chelators and different methods of chelation as well as the cost of chelation and where chelation therapy was offered around Columbia.Ashley informed me of a place called the McDonagh Medical Center, which had a case in Missouri Supreme Court a few years back. The case was about their use of chelation therapy, so right away I got to work reading the case to find out more. I didn't immediately find out whether McDonagh treated patients with autism or not, but Justin took over in talking to the clinic and I moved to other areas of chelation research.
Justin, however, found out that McDonagh does treat patients with autism and got an interview with Dr. Charles Rudolph, a partner at McDonagh and we went to Kansas City to interview him. When we got to the clinic, we walked into a waiting room where a woman behind the desk asked if we were with KOMU and said she'd take us back to Dr. Rudolph when we were ready, David, the photographer was getting some exterior shots.
After he showed us around his office, we set up for the interview. Dr. Rudolph spoke about chelation and other alternative treatments. It was very beneficial to hear an expert talk about a chelation because so much of what I had read in my research was conflicting. After the interview, we shot some footage of his lab and then headed back to Columbia.
This series is coming together so incredibly, I can't wait for you to see it! I'm honored to be a part of it.
Ian's story
This parent wants to share their story. This item was emailed to this blog--AR
My son Ian is alot like the others posted. I had a great pregnancy great delivery and great baby. He said many words up until 18 months when it all stopped. Everyone said its fine Dr's said not to worry all kids develop differently and since he drew alot maybe that's what the problem was.
We called up ECFE and asked their opinion and they sent us to a neurologist. At age 2 Ian could recite his alphabet a-z and z-a and count to 30 he was DX with PDD-NOS. At age 3 he started to read and write. At age 4 he was DX as High functioning Autism the Dr says he is at a genius level but his social skills are not there he doesn't understand he cant play rough with his sisters and that sometimes strangers are bad. He isn't afraid to go up and hug someone he doesn't know and regularly tries to go into someone else's car with them. We have a PCA work with him 5 days a week which helps out alot since he has 2 younger sisters. We recently had to place him on behavioral meds because while not on purpose he would hurt himself. Although it is a hard thing to deal with sometimes I thank god for him everyday. I learned how much patience I have and believe god gave him to me so he wouldn't go to someone who wouldn't understand him. Its one of the hardest things Ive ever done to love him so much and feel helpless in how to help him.
My son Ian is alot like the others posted. I had a great pregnancy great delivery and great baby. He said many words up until 18 months when it all stopped. Everyone said its fine Dr's said not to worry all kids develop differently and since he drew alot maybe that's what the problem was.
We called up ECFE and asked their opinion and they sent us to a neurologist. At age 2 Ian could recite his alphabet a-z and z-a and count to 30 he was DX with PDD-NOS. At age 3 he started to read and write. At age 4 he was DX as High functioning Autism the Dr says he is at a genius level but his social skills are not there he doesn't understand he cant play rough with his sisters and that sometimes strangers are bad. He isn't afraid to go up and hug someone he doesn't know and regularly tries to go into someone else's car with them. We have a PCA work with him 5 days a week which helps out alot since he has 2 younger sisters. We recently had to place him on behavioral meds because while not on purpose he would hurt himself. Although it is a hard thing to deal with sometimes I thank god for him everyday. I learned how much patience I have and believe god gave him to me so he wouldn't go to someone who wouldn't understand him. Its one of the hardest things Ive ever done to love him so much and feel helpless in how to help him.
Corbin's story
This mother wants to share her story. This item was emailed to this blog--AR
Hi.
My name is Rebecca. I am the mother of three beautiful sons Corbin, Brecken and Abraham. My six year old Corbin was diagnosed with PDD-NOS in December of 2006 at the age of 5 years 8 months old. This is his story.
On a late April afternoon in 2001 Corbin came into this world. Physically perfect in every way. However, there was something not quite right, something that the doctors nor us could see. Corbin was born with a form of Autism known as pervasive developmental disorder not otherwise specified.
The differences in his first 18-24 months of life were so subtle no one would have caught on really. He spoke, walked, fed himself and did all of the things any normal child does during that time. He learned how to count to ten, all of his colors, how to spell his name and many other things all far before he was three years old. There was always something not quite right though. Something just below the surface that we either couldn't see or couldn't accept.
As an infant Corbin was the most well behaved baby I had ever seen. He rarely cried and was very content entertaining himself. I never found it odd that to get him to sleep I had to lay him on my chest and pat his back and rear for hours sometimes. I just thought it was a weird baby thing, just like some children prefer to be rocked or walked while falling asleep. I also never made the connection that even as a tiny infant he would be fine for hours doing his own thing. We could take him out shopping all day and rarely ever hear a peep from him. He didn't cry when he was wet or dirty or much ever really. However, as soon as we got in the car to start home the screaming started. He would scream for hours after a trip to Walmart and I always blamed it on over stimulation. When we went out of town for trips he wouldn't sleep much at all, in fact he couldn't really sleep anywhere other than in his own home. Like our shopping trips as soon as we got in the car to come home the screaming would start and aside from when he was sleeping it would last for days. Getting him back into a normal routine would take weeks. I again blamed all this on over stimulation.
He also had horrible tantrums. Nothing like I had ever seen in any other child. He would throw himself on the ground and smash his head into the sidewalk at times. The really unusual part was the fact it wouldn't even phase him he would just continue to tantrum.
Sometime between 2-4 a number of other unusual behaviors popped up. He was obsessed with spinning objects. He would line his cars up and then tantrum if anyone moved them. He also began covering his ears and tantruming whenever a train went through town. He couldn't answer questions of any kind, and he couldn't differentiate between he and she. When he began preschool at 4 and 1/2 he had major problems, he cried frequently through out the day. Anytime they changed activities Corbin would cry and tantrum. He wouldn't sing with the other children in music class, but would only sit with his hands over his ears. He also didn't play with the other children but usually chose to play alone alongside the other kids but never with them.
After a particularly horrible session in music one day Corbin was sent to the principle's office for refusing to participate, and sitting with his hands over his ears. When he got to the principle's office he refused to speak with her at all. She contacted me at home and spoke to me and told me what was going on. I was infuriated that they had sent a 4 and 1/2 year old child to see the principle for something so trivial and I got online. I typed in over sensitive hearing and putting hands over ears and one of the very first things Google pulled up was a sight about Autism. That was the day I learned that my gut was right everyone else was wrong. My son was not just spoiled and naughty he was Autistic.
We went through hearing tests (normal), physicals (normal) no answers from anyone. Corbin was given a developmental screening by the county which he failed miserably and was put into pre school special education. However, my husband, and my family was not ready to hear the words Autism. They kept saying oh he is only immature next year he will be like a different kid. Against my own better judgment I listened to them. Really, what did I know he was my first born, all of these people had other children they knew what was normal and what wasn't.
Kindergarten started and Corbin was mainstreamed into a class with 24 other students. A few weeks into the year we decided to pull him out for about an hour a day. When things didn't improve his kindergarten instructor called in the special education director and finally someone listened to me. She saw all the things in Corbin that I had been screaming about for years. I was convinced Corbin had Asperger's Syndrome but she said what she saw was PDD-NOS. This was the only thing I needed to push my family over the edge. Finally someone who was well educated saw the same things I had been seeing. Back to the pediatrician's office we went. This time we were told Corbin probably had ADHD and I put my foot down. I refused to put Corbin on any medication without a referral to someone who worked with Autistic children. We waited for three months for that appointment.
On December 12, 2006 I walked into that doctor's office already knowing what they would tell me. The news didn't come as a shock but maybe more so a relief that finally a Doctor believed me. Corbin was diagnosed with PDD-NOS that day and finally we started getting him the help he so very desperately needs.
Now it is not quite a year later. He has grown and improved more in the last year than he probably had in the entire 2 years preceding. He has had his speech therapy cut in half because he has met so many goals. His tantruming and behavior has improved so tremendously that his behavior plan at school had to be greatly modified. We still have our blows though. We recently found out his IQ was significantly lower than we were hoping. He will also have to be tested for Asthma soon because contrary to popular belief Autism definitely contributes to physical ailments as well. It is NOT just a brain thing. When he gets ill he regresses and has episodes of echolalia, and looses bladder control. When it is bad enough he loses the ability to speak and uses only gestures to communicate with us. Our battle is far from over, but with the major improvements he has made in such little time I can easily see that Corbin has a very bright and beautiful future ahead of him.
Hi.
My name is Rebecca. I am the mother of three beautiful sons Corbin, Brecken and Abraham. My six year old Corbin was diagnosed with PDD-NOS in December of 2006 at the age of 5 years 8 months old. This is his story.
On a late April afternoon in 2001 Corbin came into this world. Physically perfect in every way. However, there was something not quite right, something that the doctors nor us could see. Corbin was born with a form of Autism known as pervasive developmental disorder not otherwise specified.
The differences in his first 18-24 months of life were so subtle no one would have caught on really. He spoke, walked, fed himself and did all of the things any normal child does during that time. He learned how to count to ten, all of his colors, how to spell his name and many other things all far before he was three years old. There was always something not quite right though. Something just below the surface that we either couldn't see or couldn't accept.
As an infant Corbin was the most well behaved baby I had ever seen. He rarely cried and was very content entertaining himself. I never found it odd that to get him to sleep I had to lay him on my chest and pat his back and rear for hours sometimes. I just thought it was a weird baby thing, just like some children prefer to be rocked or walked while falling asleep. I also never made the connection that even as a tiny infant he would be fine for hours doing his own thing. We could take him out shopping all day and rarely ever hear a peep from him. He didn't cry when he was wet or dirty or much ever really. However, as soon as we got in the car to start home the screaming started. He would scream for hours after a trip to Walmart and I always blamed it on over stimulation. When we went out of town for trips he wouldn't sleep much at all, in fact he couldn't really sleep anywhere other than in his own home. Like our shopping trips as soon as we got in the car to come home the screaming would start and aside from when he was sleeping it would last for days. Getting him back into a normal routine would take weeks. I again blamed all this on over stimulation.
He also had horrible tantrums. Nothing like I had ever seen in any other child. He would throw himself on the ground and smash his head into the sidewalk at times. The really unusual part was the fact it wouldn't even phase him he would just continue to tantrum.
Sometime between 2-4 a number of other unusual behaviors popped up. He was obsessed with spinning objects. He would line his cars up and then tantrum if anyone moved them. He also began covering his ears and tantruming whenever a train went through town. He couldn't answer questions of any kind, and he couldn't differentiate between he and she. When he began preschool at 4 and 1/2 he had major problems, he cried frequently through out the day. Anytime they changed activities Corbin would cry and tantrum. He wouldn't sing with the other children in music class, but would only sit with his hands over his ears. He also didn't play with the other children but usually chose to play alone alongside the other kids but never with them.
After a particularly horrible session in music one day Corbin was sent to the principle's office for refusing to participate, and sitting with his hands over his ears. When he got to the principle's office he refused to speak with her at all. She contacted me at home and spoke to me and told me what was going on. I was infuriated that they had sent a 4 and 1/2 year old child to see the principle for something so trivial and I got online. I typed in over sensitive hearing and putting hands over ears and one of the very first things Google pulled up was a sight about Autism. That was the day I learned that my gut was right everyone else was wrong. My son was not just spoiled and naughty he was Autistic.
We went through hearing tests (normal), physicals (normal) no answers from anyone. Corbin was given a developmental screening by the county which he failed miserably and was put into pre school special education. However, my husband, and my family was not ready to hear the words Autism. They kept saying oh he is only immature next year he will be like a different kid. Against my own better judgment I listened to them. Really, what did I know he was my first born, all of these people had other children they knew what was normal and what wasn't.
Kindergarten started and Corbin was mainstreamed into a class with 24 other students. A few weeks into the year we decided to pull him out for about an hour a day. When things didn't improve his kindergarten instructor called in the special education director and finally someone listened to me. She saw all the things in Corbin that I had been screaming about for years. I was convinced Corbin had Asperger's Syndrome but she said what she saw was PDD-NOS. This was the only thing I needed to push my family over the edge. Finally someone who was well educated saw the same things I had been seeing. Back to the pediatrician's office we went. This time we were told Corbin probably had ADHD and I put my foot down. I refused to put Corbin on any medication without a referral to someone who worked with Autistic children. We waited for three months for that appointment.
On December 12, 2006 I walked into that doctor's office already knowing what they would tell me. The news didn't come as a shock but maybe more so a relief that finally a Doctor believed me. Corbin was diagnosed with PDD-NOS that day and finally we started getting him the help he so very desperately needs.
Now it is not quite a year later. He has grown and improved more in the last year than he probably had in the entire 2 years preceding. He has had his speech therapy cut in half because he has met so many goals. His tantruming and behavior has improved so tremendously that his behavior plan at school had to be greatly modified. We still have our blows though. We recently found out his IQ was significantly lower than we were hoping. He will also have to be tested for Asthma soon because contrary to popular belief Autism definitely contributes to physical ailments as well. It is NOT just a brain thing. When he gets ill he regresses and has episodes of echolalia, and looses bladder control. When it is bad enough he loses the ability to speak and uses only gestures to communicate with us. Our battle is far from over, but with the major improvements he has made in such little time I can easily see that Corbin has a very bright and beautiful future ahead of him.
McDonagh Medical Center
Anthony's story
This is Anothony's story. This item was emailed to this blog--AR
Our story starts out like so many others that have been touched by autism.
I found out I was pregnant in Dec. of 2004, just 3 weeks after the death of my Grandmother. I pretty much had a normal pregnancy, very unlike my first. I had a beautiful baby boy Aug. 26th 2003, he weighed 7 lbs 5 oz and we named him Anthony.
Anthony pretty well developed normally, met all his millstones on time if not a little early. Anthony said "Mama" by age 8 months, he walked a week before his first birthday and had acquired a vocabulary of maybe 10 words that he used regularly.
Then around the age of about 13 months old, I started to notice some sensory problems ( my oldest also had/has sensory problems) so I talked to his Dr. and at the time he told me not to worry about it, at that time I thought maybe I was being a bit paranoid about things and blew it off, now I so much regret that I ever did that because I knew in my heart something was wrong. Then around the age of 18 months I noticed Anthony wasn't talking as much and he was withdrawing from a lot of things he normally wouldn't withdraw from. He got very interested in fans or anything that spun, he would sit and line things up, it also seemed he was crying all the time over every little thing bt yet he would make eye contact.
I then called birth to 3 myself and asked them to come check things out and I also talked to his Dr at this point yet again and told him everything that was going on, he then informed me that he had a child with autism and "looking at the big picture" he thought Anthony may have autism and I left his office thinking that Anthony did not have it because he was still making eye contact. I figured it was something else but wasn't sure what.
Birth to 3 came and did the evaluations on him and they said he did have delays as well as Sensory processing disorders and he was able to receive services, speech, OT as well as PT. His Dr also referred him to a specialist in VA. Which I thank God for this man every single day.
Anthony went to see him in Nov. of 05 and that day will haunt me for the rest of my life. We went into this office, and his nurse asked us a bunch of questions, and just watched him for a little bit and then said she was going to get the Dr. to talk to us, the Dr came in and did the same thing that the nurse had done and then said he was going to take Anthony and my oldest child out to the lobby to play ( they had a huge lobby that was very kid friendly) and that he would be back to talk to us.
When this Dr came back in, that changed our lives forever. He told us Anthony had autism and I looked at him and said " No your wrong, he looks at us, he makes eye contact" he then explained to us that what we were "considering" eye contact was not eye contact at all, he felt like Anthony could see right through him and I have no idea what was said after that. I sat there in shock, thinking this Dr is so wrong, this is not happening to my beautiful boy, not to my family. I left that office with my husband and my kids and some pamphlets about autism.
On the way back home (which was a 2 hour drive from where we lived) I remember going through so many emotions, there was many tears, I felt helpless, I blamed myself, then I got angry. I have never felt that much anger in my life. I wanted to know what happened, I wanted answers that wasn't there.
About 2 weeks went by and I actually started to research, and found all this stuff about shots mainly the MMR and I actually went to his Dr and asked if the shot has caused this and he said there's no proof that the shot had done this to so many kids so I left it at that. I felt at the time I would probably never have an answer and instead of looking for something that was not there, I needed to help my son. Somehow I had to get past the autism and find my son before I could ever help him.
Today Anthony is a happy 4 year old who just amazes me in so many ways. He has had a life full of therapy, OT, PT, Speech, ABA, DTT, and has had a very good home program. He is in a very good special needs preschool program with a wonderful teacher and wonderful therapist. Anthony loves school, he knows all his shapes, counts to 10 in Spanish, knows his ABC's and has become quit the little singer.
I remember a time not to long ago when I begged God to let me hear him say "mama" just once more, I needed to hear that from him and it hurt so bad to hear other little kids his age calling for "mama" and Anthony just couldn't do it. Now Anthony says "Mama I love you" and it's so beautiful to watch him grow, to see the things he does, to hear him laugh, to see him smile. I don't see the autism anymore, I see my baby, I see how blessed I am to have autism touch our lives and I wouldn't want it any other way. Autism can be a beautiful thing once you see your child. Once that happens the world is a different place, as adults we tend to take things for granted and we never stop to look at things from a child's point of view, where everything is so new. Having Anthony made me do that. He's nothing short of amazing!
I love someone with Autism!
Monday, October 22, 2007
Caleb's Story
Hi everyone, My name is Jessica and I have 2 sons. Caleb who is 3 and he was diagnosed in September 2006 with Autism and Nathan my happy go lucky 17 month old "normal" son. We have had and are still having a pretty bumpy ride on the long road of the Spectrum. I will share our story from the beginning.
Caleb was born a healthy and happy baby. I was a single mom and I loved every minute of it despite doing it alone. He developed at a advanced rate he was always ahead of where he should have been. Caleb crawled at 3 1/2 months, sat up alone right before that, he had a few words by 6 months and he just seemed to catch on extremely fast to everything he tried. When he was 15 months he was such a wonderful fun loving child, he loved to play with everyone and mostly his cousin because they are just 2 months apart. Well right after his 15 month check up he got really ill and it was a horrible time. He had to be hospitalized for breathing issues and was released the very next day. Well the day after that he had another problem he had somehow got Salmonella. We were living with my brother and SIL at the time and we all were just dumbfounded because he had not had chicken or eggs in that time frame. After all these issues Caleb never went back to being himself. He was having meltdowns, head banging, stopped having interest in other kids and seemed to lose interest in just about everything. Above all he stopped talking and it was just so sudden I had no idea what was going on. So at his 18 month check up I told his regular Nurse Practitioner about everything and she thought it was just a phase because my brother and sil had just had a baby and maybe he felt a little jealousy. OK I thought that's it its a phase not wanting to think something was really wrong with him, even though in the back of my mind I knew something was not right. So in June 2006 he had a 2 yr check up and I again stated all his issues and it was not a phase I told her, I felt something was wrong. She listened and examined Caleb and went over the development list of where he should be and she was astonished that he was so behind and said she would get us in to see some Doctors in a bigger city and she felt it may be Autism. Autism, I was like what in the world is Autism. So I went home with the thinking ok lets just see what happens. Caleb was also referred to a program called Birth to 3, they had a Speech Therapist come out and assess Caleb. I was so upset with the results I wanted to scream. He had the language ability of a 9 month old and he needed to start therapy right away. So while we are waiting for all his medical records to come from Pa to the place that's going to evaluate him we started speech. I believe that if he had not started speech when he did he would have been unable to regain language with actual talking. I miss the therapist he had from Birth to 3, she did wonders with him. In a years time he doubled his speaking ability to the ability of a 18 month old. So getting back to the evaluation, we finally got the appointments in order and spent 3 days driving back and forth to LaCrosse in Wisconsin. The final day was the day of what they call the Arena Assessment. There were about 6 or more professionals present some just watching some interacting with Caleb. At the end of this evaluation every single person agreed Caleb did indeed have Autism and we began our journey.
We went back to LaCrosse to see the Developmental Ped about 3 or 4 times since then and it was just not anything like I thought it would be. This person insisted I treat my son like a dog and give him load and short commands and that's how I was going to get his attention and make him listen to me. I just about laughed in this Dr's face and say how dare you give me this advice. I took Caleb to see Child Psychiatry Dr's with little help other than the simple answer most of us receive " You need to be a better parent and learn different parenting". What, wait a minute are you telling me I am a bad parent and that is why my child behaves the way he does, yeah those thoughts are running through my head. I never went back to that woman again. Then we went to another who listened to my problems, Caleb is violent and aggressive and he is a runner. On and on I am going and his only reply is there is nothing I can tell you to do because you are trying everything I can think to tell you. So since than I have not had much luck with getting proper care for Caleb. He needs someone who knows what is going on and not just assuming he is like others with the label because every single child is different. That is what makes Autism such a puzzle is it not?
So as of now Caleb is in Early Childhood at the local school and he has wonderful teachers and aides who are doing a great job with him. He still is violent and aggressive, he still gets little sleep and he still drapes over me like a blanket. One thing is for sure I love him so much I will do anything to help him but I again have been hit with road block after road block. No one seems to be able to offer me any ideas or helpful insight. Everyday I try and try to get Caleb to do things like play with toys and even eat food but it never works and everyday I get stressed and worn out because it seems like all my energy goes into be his mom, his speech therapist, his OT, his teacher, his doctor and etc. I am not complaining but it would be nice to have someone with insight tell me what may work and what may not. He is on a waiting list for in home therapy but Caleb will not have a slot until late summer 2008.
This is a short version of our story and there may be somethings missing but I like others want this growing problem addressed and I am willing to put our story out there in hopes that maybe just maybe someone will listen and do something instead of just talking about it. Thanks to all of you for listening or reading I should say.
Jessica
Caleb was born a healthy and happy baby. I was a single mom and I loved every minute of it despite doing it alone. He developed at a advanced rate he was always ahead of where he should have been. Caleb crawled at 3 1/2 months, sat up alone right before that, he had a few words by 6 months and he just seemed to catch on extremely fast to everything he tried. When he was 15 months he was such a wonderful fun loving child, he loved to play with everyone and mostly his cousin because they are just 2 months apart. Well right after his 15 month check up he got really ill and it was a horrible time. He had to be hospitalized for breathing issues and was released the very next day. Well the day after that he had another problem he had somehow got Salmonella. We were living with my brother and SIL at the time and we all were just dumbfounded because he had not had chicken or eggs in that time frame. After all these issues Caleb never went back to being himself. He was having meltdowns, head banging, stopped having interest in other kids and seemed to lose interest in just about everything. Above all he stopped talking and it was just so sudden I had no idea what was going on. So at his 18 month check up I told his regular Nurse Practitioner about everything and she thought it was just a phase because my brother and sil had just had a baby and maybe he felt a little jealousy. OK I thought that's it its a phase not wanting to think something was really wrong with him, even though in the back of my mind I knew something was not right. So in June 2006 he had a 2 yr check up and I again stated all his issues and it was not a phase I told her, I felt something was wrong. She listened and examined Caleb and went over the development list of where he should be and she was astonished that he was so behind and said she would get us in to see some Doctors in a bigger city and she felt it may be Autism. Autism, I was like what in the world is Autism. So I went home with the thinking ok lets just see what happens. Caleb was also referred to a program called Birth to 3, they had a Speech Therapist come out and assess Caleb. I was so upset with the results I wanted to scream. He had the language ability of a 9 month old and he needed to start therapy right away. So while we are waiting for all his medical records to come from Pa to the place that's going to evaluate him we started speech. I believe that if he had not started speech when he did he would have been unable to regain language with actual talking. I miss the therapist he had from Birth to 3, she did wonders with him. In a years time he doubled his speaking ability to the ability of a 18 month old. So getting back to the evaluation, we finally got the appointments in order and spent 3 days driving back and forth to LaCrosse in Wisconsin. The final day was the day of what they call the Arena Assessment. There were about 6 or more professionals present some just watching some interacting with Caleb. At the end of this evaluation every single person agreed Caleb did indeed have Autism and we began our journey.
We went back to LaCrosse to see the Developmental Ped about 3 or 4 times since then and it was just not anything like I thought it would be. This person insisted I treat my son like a dog and give him load and short commands and that's how I was going to get his attention and make him listen to me. I just about laughed in this Dr's face and say how dare you give me this advice. I took Caleb to see Child Psychiatry Dr's with little help other than the simple answer most of us receive " You need to be a better parent and learn different parenting". What, wait a minute are you telling me I am a bad parent and that is why my child behaves the way he does, yeah those thoughts are running through my head. I never went back to that woman again. Then we went to another who listened to my problems, Caleb is violent and aggressive and he is a runner. On and on I am going and his only reply is there is nothing I can tell you to do because you are trying everything I can think to tell you. So since than I have not had much luck with getting proper care for Caleb. He needs someone who knows what is going on and not just assuming he is like others with the label because every single child is different. That is what makes Autism such a puzzle is it not?
So as of now Caleb is in Early Childhood at the local school and he has wonderful teachers and aides who are doing a great job with him. He still is violent and aggressive, he still gets little sleep and he still drapes over me like a blanket. One thing is for sure I love him so much I will do anything to help him but I again have been hit with road block after road block. No one seems to be able to offer me any ideas or helpful insight. Everyday I try and try to get Caleb to do things like play with toys and even eat food but it never works and everyday I get stressed and worn out because it seems like all my energy goes into be his mom, his speech therapist, his OT, his teacher, his doctor and etc. I am not complaining but it would be nice to have someone with insight tell me what may work and what may not. He is on a waiting list for in home therapy but Caleb will not have a slot until late summer 2008.
This is a short version of our story and there may be somethings missing but I like others want this growing problem addressed and I am willing to put our story out there in hopes that maybe just maybe someone will listen and do something instead of just talking about it. Thanks to all of you for listening or reading I should say.
Jessica
The myth of the autism epidemic
I recently started AutismNewsBeat.com to provide working journalists with an evidence-based resource for writing about autism. Having spent several years in a newsroom, I understand how the pressures of deadlines, combined with an unfamiliar topic, can sometimes lead to inaccurate coverage. By offering constructive reviews of press coverage, and links to accurate and informative articles and studies, I hope to change the way some in the press approach this complicated and emotional topic. I am also the father of a 12-year-old boy with autism, and my interest in this topic is just one more of the many gifts my son has given me.
Popular press coverage of autism is bedeviled by a number of misperceptions. Chief among these is the idea, stated with much certainty, that we are in the midst of an autism epidemic. In fact, it is far from certain that the prevalence autism spectrum disorders is any greater today than in the past.
But the myth of the autism epidemic will not die. It's like Jason in the Friday the 13th movies - you can shoot, burn, drown, crush, stab or gut the monster, but it will always return for the sequel. Neither facts or logic will deter the myth's defenders, because the political and business agendas of so many rest on its very existence. Without an epidemic, claims that vaccines cause autism are moot, and the overnight quack-cure industry goes into Chapter 11. These things are certain to me, and will become clear to others as more reporters rely on evidence rather than the agenda-driven fear mongering of others.
Epidemic promoters point to an increase in autism diagnoses over the last 20 years, from 1:2,100 to 1:166. There are several reasons for this change that have nothing to do with an epidemic. For example, there were no standard criteria for autism in the Diagnostic and Statistical Manual (DSM) until 1980, and the criteria in the DSM have undergone several changes since then. It's entirely possible that Jeremy, the autistic college student whose story is told here, wouldn't have been labeled autistic 20 years ago.
Imagine if the definition of "legally blind" underwent the same diagnostic change as autism. Today, approximately 1:250 persons in the US is legally blind, defined as having 20/200 vision or worse in the better eye that cannot be improved with corrective lenses. If the definition was changed to 20/100 vision, thousands more would qualify for the tax breaks and services, leading to greater awareness and more diagnoses. The phrase "blind as a bat" would be replaced by "blind as a sheepdog", and a faux epidemic would be born, albeit with less outrage.
So why the outrage over autism? There are a number of factors which make autism a fertile field for fraud and misunderstanding, but the key enabler is the very thing most capable of driving a stake through the monster's heart: the internet. Joseph at Natural Variation explored the internet's pernicious influence on autism here.
Enter "autism epidemic" into a Google search and you'll receive 107,000 hits. Of the first ten hits, six lead us to quack medical sites, misleading blog entries, and poorly-sourced news stories. One is a dry but accurate Wikipedia entry which explains the crucial difference between incidence and prevalence. As we delve further, we come to a 2005 Medscape interview with two well-respected researchers who explain the epidemic that wasn't. Another hit leads us to a Time Magazine interview with Dr. Roy Grinker, author of Unstrange Minds, a must-read book for anyone who wants to understand the science and politics of autism. The last hit is a favorable review of Grinker's book by blogger Kristina Chew, PhD, of AutismVox.
The problem with so much information available to so many is that although the question of whether an epidemic exists is scientific, a critical mass of misinformed on-line commentary rests on how "real" the epidemic feels. Typical is this comment left on AutismVox:
So I thank Ashley and KOMU for this experiment in participatory journalism. May it lead to higher standards for separating the wheat of truth from the chaff of nonsense. In future posts I'll write about some other enduring myths that bedevil or understanding of autism.
Popular press coverage of autism is bedeviled by a number of misperceptions. Chief among these is the idea, stated with much certainty, that we are in the midst of an autism epidemic. In fact, it is far from certain that the prevalence autism spectrum disorders is any greater today than in the past.
But the myth of the autism epidemic will not die. It's like Jason in the Friday the 13th movies - you can shoot, burn, drown, crush, stab or gut the monster, but it will always return for the sequel. Neither facts or logic will deter the myth's defenders, because the political and business agendas of so many rest on its very existence. Without an epidemic, claims that vaccines cause autism are moot, and the overnight quack-cure industry goes into Chapter 11. These things are certain to me, and will become clear to others as more reporters rely on evidence rather than the agenda-driven fear mongering of others.
Epidemic promoters point to an increase in autism diagnoses over the last 20 years, from 1:2,100 to 1:166. There are several reasons for this change that have nothing to do with an epidemic. For example, there were no standard criteria for autism in the Diagnostic and Statistical Manual (DSM) until 1980, and the criteria in the DSM have undergone several changes since then. It's entirely possible that Jeremy, the autistic college student whose story is told here, wouldn't have been labeled autistic 20 years ago.
Imagine if the definition of "legally blind" underwent the same diagnostic change as autism. Today, approximately 1:250 persons in the US is legally blind, defined as having 20/200 vision or worse in the better eye that cannot be improved with corrective lenses. If the definition was changed to 20/100 vision, thousands more would qualify for the tax breaks and services, leading to greater awareness and more diagnoses. The phrase "blind as a bat" would be replaced by "blind as a sheepdog", and a faux epidemic would be born, albeit with less outrage.
So why the outrage over autism? There are a number of factors which make autism a fertile field for fraud and misunderstanding, but the key enabler is the very thing most capable of driving a stake through the monster's heart: the internet. Joseph at Natural Variation explored the internet's pernicious influence on autism here.
Enter "autism epidemic" into a Google search and you'll receive 107,000 hits. Of the first ten hits, six lead us to quack medical sites, misleading blog entries, and poorly-sourced news stories. One is a dry but accurate Wikipedia entry which explains the crucial difference between incidence and prevalence. As we delve further, we come to a 2005 Medscape interview with two well-respected researchers who explain the epidemic that wasn't. Another hit leads us to a Time Magazine interview with Dr. Roy Grinker, author of Unstrange Minds, a must-read book for anyone who wants to understand the science and politics of autism. The last hit is a favorable review of Grinker's book by blogger Kristina Chew, PhD, of AutismVox.
The problem with so much information available to so many is that although the question of whether an epidemic exists is scientific, a critical mass of misinformed on-line commentary rests on how "real" the epidemic feels. Typical is this comment left on AutismVox:
What remains to be true is that I personally know at least 50 autistic children. I don’t need someone to tell me they’re autistic. Their behaviors scream it to me. 10 years ago I knew one child who exhibited the behaviors we now know as autism. And most people reading this know the same exact thing.And the anecdotes lodge themselves in the national conversation over autism that play out in the popular media every day.
So I thank Ashley and KOMU for this experiment in participatory journalism. May it lead to higher standards for separating the wheat of truth from the chaff of nonsense. In future posts I'll write about some other enduring myths that bedevil or understanding of autism.
Jeremy- Meredith
Every story that I have seen so far on autism seems to only focus on children with autism and what life is like for the child and their family; while this is a very important aspect of autism, children are not the only ones affected, children don't just grow out of their autism and it seems that adults with autism are often overlooked by the media. This is the reason that I was so excited to find out that we had an adult with autism that wanted to be a part of our series.During the interview Jeremy really did amaze me, he did not have much trouble speaking...he was not disconnected like I thought that he may have been. He opened my eyes and made me realize that there were very few differences between us. He was extremely interested in all of the camera equipment and wanted to know everything that Mark and I were doing during the interview with his mother. A conversation that Jeremy had with his mom about cable companies after the interview surprised me- he knew so much about the technology and could recall the exact pricing for all the different kind of packages off the top of his head- I was impressed, and I still would have been impressed even if Jeremy did not have autism.
I loved being able to go and meet Jeremy, I think that his story is an important one to be told as a part of our series because even though his autism will never go away, he is working hard and appears to be very much like many of the other guys my age that I am around everyday.
Story Idea-vaccine safety
This person wants more coverage on vax safety. This item was emailed to this blog.--AR
I hope you will report on the vaccine safety issue. Vaccines contain a number of toxic ingredients, and in addition we need to do more to determine which children will be affected (for example, it is shown that moms with auto-immune conditions stand a much greater chance of having vaccines affect their children negatively).
As Jenny McCarthy has been saying on her recent press tour, the vaccine schedule needs to be re-visited. There are too many given in too short a time span, and in addition, vaccines should not be necessarily given to every child…they are not “one size fits all”.
In addition, many studies call into question how effective they even are. In the case of recent outbreaks, the majority of those affected were fully vaccinated.
Best,
Carrie
Jeremy- First View
Here is a sneak peek for our bloggers. Jeremy is an adult who has autism. Thanks to Mark and Meredith for doing this.
Everhart-First View
Here is a sneak peek for our bloggers. The Everhart family has two children on the spectrum. Thanks to Justin for putting this together using the webcam.
Sunday, October 21, 2007
Jeremy- Mark
As a research assistant, I have been searching for a local adult with autism, who would speak with us on camera, for the last several weeks. When I received an email that Jeremy and his mom, Robin, were willing to speak with Ashley, I was thrilled. I was eager to hear Jeremy's story because he is at that age level and transition in life when adults with autism have the potential to be left in the dust and fail to plug in to society. Robin cares deeply for her son and they have both been proactive in connecting Jeremy to the community.It might have taken years for Jeremy to receive the correct diagnosis, but once his condition was defined, he has utilized many community resources to ensure that his condition does not define him. When asked his favorite hobbies, Jeremy immediately knew the answer - computers. During the interview, Jeremy was curious about our video camera. To be completely honest, he knew far more about our station's equipment than I did - a testament to the knowledge that some adults with autism, especially Jeremy, possess. Jeremy knows that he wants to work with computers and technology in some capacity and that is where his energy is focused right now; Jeremy has motivation that many college students spend four years trying to develop.
Jeremy is the same age as me, which means that we share some future goals - learning a life skill, finding a job and picking that first apartment. I want to say that Jeremy is like every other 20 year old, but the fact is that he is not; Jeremy has faced a level of challenge that many 20 year olds never face. I'm certain that his perseverance will come through in the series.
Story Idea-Our story
This person wants to share their story...This item was emailed to this blog--AR
Thousands of children are not getting the help they deserve because their parents are misinformed or uneducated. My 5-year old son Elias is high functioning Autistic, but you would not know it when first meeting him. Most people think of Rain Man when they think Autism. Elias appears to make eye contact, is very social with adults and is extremely verbal and polite.
We were turned away from services because miseducated doctors told us he couldn't be Autistic because he, "makes eye contact and gestures." These were doctors! With the growing epidemic (1 in 150 children) it is imperative that we show other parents that their "weird" child may be on the spectrum. People always told us that Elias was "just sensitive." I started feeling like maybe I was the person who had something wrong with them. I felt like no one else saw the things my husband and I did. I have never felt so helpless in my life.
We pushed to find out what was wrong with him. It took two years to get help. One doctor told us, if we hadn't pushed he would have surely slipped through the cracks and he would not be getting the therapy he so desperately needs to have a good shot of a independent life. How many other children are slipping through the cracks? Many parents don't know what to do. They are not sure what is wrong with their child. Education is key!
Thousands of children are not getting the help they deserve because their parents are misinformed or uneducated. My 5-year old son Elias is high functioning Autistic, but you would not know it when first meeting him. Most people think of Rain Man when they think Autism. Elias appears to make eye contact, is very social with adults and is extremely verbal and polite.
We were turned away from services because miseducated doctors told us he couldn't be Autistic because he, "makes eye contact and gestures." These were doctors! With the growing epidemic (1 in 150 children) it is imperative that we show other parents that their "weird" child may be on the spectrum. People always told us that Elias was "just sensitive." I started feeling like maybe I was the person who had something wrong with them. I felt like no one else saw the things my husband and I did. I have never felt so helpless in my life.
We pushed to find out what was wrong with him. It took two years to get help. One doctor told us, if we hadn't pushed he would have surely slipped through the cracks and he would not be getting the therapy he so desperately needs to have a good shot of a independent life. How many other children are slipping through the cracks? Many parents don't know what to do. They are not sure what is wrong with their child. Education is key!
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