Autism info (very long)

He ladies,

After the vaccine question I saw there were a lot of questions about autism. I wanted to do my best to answer all those questions. I am not an expert on autism, I am a mom of a six year old autistic child who has done a lot of research. Here is what I found.

1. Autism itself
First, autism is now considered a spectrum disorder. There are five diagnosis that are considered to be on the autism spectrum :Rhett's syndrome (very rare - only effects girls), fragile X syndrome (very rare - usualy only effects boys), classic autism, pervasive developmental disorder not otherwise specified (PDD-NOS), and Asperger's syndrome. In that, there is infantile forms of the spectrum and regressive forms. Infantile means there from birth where as regressive means developed normally to a certain point and then lost skills.

Autism is more likely to effect boys than girls (I think it is four times more likely, but I am not sure the excact number). When it does effect girls it is usually more severe.

2. Autism and Vaccines.
There was an English study put out by a man called Wakefield. It took a very small group of children with autism and conducted gi biopsys. It was found that their GI tracts contained live measels in them (think it was measuls - it was either that or the mumps). He stated that he felt this was directly linked to the MMR vaccine. There were many flaws to this study, but I believe there is something valid here.

Some other children for some reasons have high levels of Mercury in their system. Mercury is known to cause brain damage. There was a preservative in some vaccines that contained mercury - thus this was thought to be a link as well.

Many parents state that their children were developmentally normal until they recieved a vaccine (usually the MMR). The question here is this - is this linked to the vaccine or something else.

There have been many studies done that say there is no link. Many studies showed the Wakefield study to be flawed. Most of these studies are funded by the companies who make the vaccine.

I work at the health department and the Dr. I work with there states that after a round of vaccines most kids are "super immune" for several weeks and usually don't catch illnesses for a few weeks. Hmm.. look at my next segement. Could there be a link there.

3. Autism and autoimmune disorders
Most kids with autism seem to have autoimmune issues. Many have chronic eczema, GI problems, etc. Children with type I diabetes are more likely to develope autism (In some people type I is thought to be caused by the body's immune system attacking the pancrease and essentially killing it). Thus there is a thought that in some kids with autism there immune system attacts the brain somehow causing these problems. Could the vaccines cause this immune reaction or could a child catch some illness that causes this - like in type I diabetes?

4. Autism caused by foods
Some children are very sensitive to foods. There is a opiate (sp?) theory. For some reason these kids have leaky gut syndrome. Thus, certain protiens, specifically Gluten and Casein, pass into the body only half digested. The pass into the system as gliedomorphine (sp?) and caseiomorphine. I have never personally experienced morphine, but from what I have read it can cause changes in the way you think, sensory issues, and hallucinations.

50-75% (depending on what study you read) of children with autism and ADHD show reduced symptems when they follow a Gluten Free/Casein Free/limited soy diet.

5. Autism is a spectrum
People with autism have MANY different levels of functioning. Some children never learn to communicate and are locked in their own world forever. Others become great minds and do many things (it is thought that Albert Einstein had a form of autism and Bill Gates was diagnosed with Asperger's Syndrome)

6. Autism and genes
There has been studies that link autism to specific chromosome abnormalities - Specifically chromosome number 17. If there is one child with autism in a family it is more likely that there will be other children. People who work in the computer field are more likely to have a child with autism. People who choose research fields are more likely to have a child with autism.

OK those are the cold facts that I know of (or I can think of right now.) Here is a good website for more info. http://www.autism-society.org/site/PageServer

I hope that answers any questions.

Now, I wanted to add my experiences with autism

My son was different from conception.

In the womb:
He never stopped moving and rarely slept. He moved more than the twins did! From 16 weeks on I never felt him stop moving. I am sure he had to sleep some - probably when I slept - but when I was awake so was he.

He learned beats and could kick the drum beat to some songs. He had favorte songs and perfecty kicked out the drum beat. When he was bored he would kick my heartbeat.

He learned how to count to two in the womb. My husband loved to say one and than tap my belly once, then two and tap my belly twice, then three etc. By the end of the pregnancy my husband could say one and my son would tap once. He would say two and Gabe would tap twice. I thought this was normal but I guess this was rare.

As a baby:
Gabe had sleep issues from birth. As a newborn, the most sleep he ever got in a 24 hour period was 8 hours. In order for him to sleep he had to be touched by one of us (not held but touched). If you removed your hand from him he would wake up within a minute. Everytime he did wake it it was at least 30 minutes of screaming. There was no way to settle him - you just had to let him scream

He would choke on everything - saliva, breastmilk, etc. He couldn't transition from breast to bottle. It was breast or nothing. He never took a bottle - even when we tried.

He had bonding issues. I would joke that the only reason he prefered me to anyone else was because I had the milk supple. I wasn't far off here. The only person he would let touch him was me. He screamed if anyone else touched or held him.

He did not like to be held - like to be touched but would not be held.

He would only maintain my eyecontact - no one elses.

Very high pain tolerance. He rarely cried when sick and didn't cry during shots.

He loved to bang his head. At four months old his favorite thing was to roll under the coffee table and rythimcally bang his head.

Needed background noise to function. The TV or radio had to be on for 24 hours. He didn't watch it but it needed to be on or he would just scream and beat his head.

Never interested in other babies. Most babies go through a phase where they see other babies and they are captivated. Gabe ignored other children

Pre-toddler to toddler:
Gabe had early and perfect speech. He perfectly immitated what he heard. By a year he could repeat full sentences.

Did not transistion to table foods well. At two we still had to puree his foods. Gagged and choked on everything!

Self-limited foods. The only foods he would eat was mac n cheese, chicken nuggets, cottage cheese, noodles, milk, water,and chicken covered in gravy. That was it. He defied that "Children will not let themselves starve" theory. I decided at one point that I wasn't going to make these things anymore and he could just eat what I made. He went 9 days consuming nothing but water. He was 25 pounds at six months and 25 pounds at three years.

Chronic diarrhea.

Skin rash.

Night terrors (2-3 per night)

Bonding issues continued.

Survived off 3-4 hours sleep in a 24 hour period.

Did not interact with other children. He would interact with adults but he avoided children at all costs.

Played with toys in a strage way. He loved matchbox cars but he would just line them up instead of playing with them correctly.

Preschooler:
Started seeing things that weren't there. He would sit in the corner and scream that there were bugs on him. There were none, but he saw them there. There was also "The Bald Lady". He would talk to her in the begining but then he became very afraid of her. He would scream "The Bald Lady is looking at me."

Became a walking encyclopedia. If he heard it once he knew it. We would have the discovery channel on a lot (he still needed sound to function) and he would just absorb everything - even if he wasn't paying attention.

Could not tell the difference between cold and hot, hungry and tired, etc.

Had no empathy. Did not realize that if someone was laughing it meant they were happy and if someone was crying it meant they were sad.

Captivated by math. He could add and subtract by the age of two. Also, very interested in letters and words. He could read by three.

Could not hold two way conversation. Yes - he had a massive vocabulary but he it was just fact based speech. The example I usually give is this, "Gabe, would you like milk or juice," and is answer would be something like, "Anthony Wiggle wears a blue shirt." or "Mommies Volvo has 163 horsepower."

Gabe now:
Gabe was diagnosed at 3 with PDD-NOS. At that point we began to look for treatment. Medical insurance does not cover autism - it is considered a developmental delay. Due to this, the school system typically provides treatment for autism. For Gabe, we were told, "Yes he has a form of autism. Yes it really effects his social and emotional development. He would really benefit for OT since he has many sensory issues (mostly oral and sleep), but his autism has not interfered with his intellectual ablilty to learn. He is, in fact 2-3 years advanced as far as his IQ. Thus, we can not help you. He will fall behind when he hits school and then we will help, but we can't do anything until he falls behind."

I refused to accept that. I looked for all forms of "alternative" treatments. That was when I came accross the Gluten Free/Casein free diet. Being a dietitian I was very against it, but since there are so few treatments you can do on your own I decided to give it a try.

At that point, the only items GAbe would consume were gluten and casein containing items. Thus I thought he would starve to death.

I removed the casein first (milk products). The first day we were casein free was the first night he slept more than three hours and didn't have a night terror. Within three days he stopped seeing the bald lady and stopped feeling the bugs. He had a lot of really weird fears and within two weeks they were gone. He was much more relaxed.

After a month of being casein free I decided to remove the gluten (wheat). This is much harder to do. This was a lot more subtle. He slowly began to be more focused. After two months gluten free he hugged us for the first time. He started understanding the difference between hunger and tired. He began to hold two way conversation. He could tell the difference between hot and cold. He started eating three meals a day and was able to sit at the table with us. His skin rash went away and his stool was usually solid.

By the time he was four he was almost "normal". He just seemed like a super bright four year old. At this point they decided to test him for Celiac disease. In order to test him he had to eat gluten for at least 30 days. He was in the office when the dr. said that so when we left the office he said, "I want McDonald's chicken nuggets. The dr said I could eat those for the next month so I am going to!" That night he had chicken nuggets. The next day he had pizza (which contains milk). The night he had the pizza he spent the next 10 hours in the corner of the living room beating his head on the wall screaming, "The bald lady is looking at me mommy! Make the bald lady go away!" That was 2 1/2 years ago and we have never given him milk since (and the bald lady hasn't come back since!)

We did our 30 days of gluten filled food. He doesn't have celiac disease. In that month he lost his ability to hold two way conversation. His skin rash came back. The diarrhea came back. He lost the ability to tell the difference between hot and cold, hunger and tired, etc. He craved foods high in gluten - that was all he would eat. He head banged again. He wouldn't sleep unless I was touching his feet (only his feet). 30 days of gluten and it took us six months of being back on the diet to get him back to normal.

Gabe is now six. He is in a regular classroom. He has many friends. He transistions well. He is one of the brightest kids in his class. He still needs to fall asleep to the TV. He still is a little fact hound. He still sometimes has a hard time understanding social rules. He doesn't like organized sports - he finds them rude (you are not supposed to take the ball away form someone who has it). He still really doesn't like to be hugged, but he will hug. He is almost "normal", but what is "normal" anyway. I like to tell people that he was able to keep the good parts of autism and get rid of most of the bad parts.

I know this is really long but there were a lot of questions I was coming accross about autism and this was the best way I thought to deal with them.

Angel

 

He ladies,

After the vaccine question I saw there were a lot of questions about autism. I wanted to do my best to answer all those questions. I am not an expert on autism, I am a mom of a six year old autistic child who has done a lot of research. Here is what I found.

1. Autism itself
First, autism is now considered a spectrum disorder. There are five diagnosis that are considered to be on the autism spectrum :Rhett's syndrome (very rare - only effects girls), fragile X syndrome (very rare - usualy only effects boys), classic autism, pervasive developmental disorder not otherwise specified (PDD-NOS), and Asperger's syndrome. In that, there is infantile forms of the spectrum and regressive forms. Infantile means there from birth where as regressive means developed normally to a certain point and then lost skills.

Autism is more likely to effect boys than girls (I think it is four times more likely, but I am not sure the excact number). When it does effect girls it is usually more severe.

2. Autism and Vaccines.
There was an English study put out by a man called Wakefield. It took a very small group of children with autism and conducted gi biopsys. It was found that their GI tracts contained live measels in them (think it was measuls - it was either that or the mumps). He stated that he felt this was directly linked to the MMR vaccine. There were many flaws to this study, but I believe there is something valid here.

Some other children for some reasons have high levels of Mercury in their system. Mercury is known to cause brain damage. There was a preservative in some vaccines that contained mercury - thus this was thought to be a link as well.

Many parents state that their children were developmentally normal until they recieved a vaccine (usually the MMR). The question here is this - is this linked to the vaccine or something else.

There have been many studies done that say there is no link. Many studies showed the Wakefield study to be flawed. Most of these studies are funded by the companies who make the vaccine.

I work at the health department and the Dr. I work with there states that after a round of vaccines most kids are "super immune" for several weeks and usually don't catch illnesses for a few weeks. Hmm.. look at my next segement. Could there be a link there.

3. Autism and autoimmune disorders
Most kids with autism seem to have autoimmune issues. Many have chronic eczema, GI problems, etc. Children with type I diabetes are more likely to develope autism (In some people type I is thought to be caused by the body's immune system attacking the pancrease and essentially killing it). Thus there is a thought that in some kids with autism there immune system attacts the brain somehow causing these problems. Could the vaccines cause this immune reaction or could a child catch some illness that causes this - like in type I diabetes?

4. Autism caused by foods
Some children are very sensitive to foods. There is a opiate (sp?) theory. For some reason these kids have leaky gut syndrome. Thus, certain protiens, specifically Gluten and Casein, pass into the body only half digested. The pass into the system as gliedomorphine (sp?) and caseiomorphine. I have never personally experienced morphine, but from what I have read it can cause changes in the way you think, sensory issues, and hallucinations.

50-75% (depending on what study you read) of children with autism and ADHD show reduced symptems when they follow a Gluten Free/Casein Free/limited soy diet.

5. Autism is a spectrum
People with autism have MANY different levels of functioning. Some children never learn to communicate and are locked in their own world forever. Others become great minds and do many things (it is thought that Albert Einstein had a form of autism and Bill Gates was diagnosed with Asperger's Syndrome)

6. Autism and genes
There has been studies that link autism to specific chromosome abnormalities - Specifically chromosome number 17. If there is one child with autism in a family it is more likely that there will be other children. People who work in the computer field are more likely to have a child with autism. People who choose research fields are more likely to have a child with autism.

OK those are the cold facts that I know of (or I can think of right now.) Here is a good website for more info. http://www.autism-society.org/site/PageServer

I hope that answers any questions.

Now, I wanted to add my experiences with autism

My son was different from conception.

In the womb:
He never stopped moving and rarely slept. He moved more than the twins did! From 16 weeks on I never felt him stop moving. I am sure he had to sleep some - probably when I slept - but when I was awake so was he.

He learned beats and could kick the drum beat to some songs. He had favorte songs and perfecty kicked out the drum beat. When he was bored he would kick my heartbeat.

He learned how to count to two in the womb. My husband loved to say one and than tap my belly once, then two and tap my belly twice, then three etc. By the end of the pregnancy my husband could say one and my son would tap once. He would say two and Gabe would tap twice. I thought this was normal but I guess this was rare.

As a baby:
Gabe had sleep issues from birth. As a newborn, the most sleep he ever got in a 24 hour period was 8 hours. In order for him to sleep he had to be touched by one of us (not held but touched). If you removed your hand from him he would wake up within a minute. Everytime he did wake it it was at least 30 minutes of screaming. There was no way to settle him - you just had to let him scream

He would choke on everything - saliva, breastmilk, etc. He couldn't transition from breast to bottle. It was breast or nothing. He never took a bottle - even when we tried.

He had bonding issues. I would joke that the only reason he prefered me to anyone else was because I had the milk supple. I wasn't far off here. The only person he would let touch him was me. He screamed if anyone else touched or held him.

He did not like to be held - like to be touched but would not be held.

He would only maintain my eyecontact - no one elses.

Very high pain tolerance. He rarely cried when sick and didn't cry during shots.

He loved to bang his head. At four months old his favorite thing was to roll under the coffee table and rythimcally bang his head.

Needed background noise to function. The TV or radio had to be on for 24 hours. He didn't watch it but it needed to be on or he would just scream and beat his head.

Never interested in other babies. Most babies go through a phase where they see other babies and they are captivated. Gabe ignored other children

Pre-toddler to toddler:
Gabe had early and perfect speech. He perfectly immitated what he heard. By a year he could repeat full sentences.

Did not transistion to table foods well. At two we still had to puree his foods. Gagged and choked on everything!

Self-limited foods. The only foods he would eat was mac n cheese, chicken nuggets, cottage cheese, noodles, milk, water,and chicken covered in gravy. That was it. He defied that "Children will not let themselves starve" theory. I decided at one point that I wasn't going to make these things anymore and he could just eat what I made. He went 9 days consuming nothing but water. He was 25 pounds at six months and 25 pounds at three years.

Chronic diarrhea.

Skin rash.

Night terrors (2-3 per night)

Bonding issues continued.

Survived off 3-4 hours sleep in a 24 hour period.

Did not interact with other children. He would interact with adults but he avoided children at all costs.

Played with toys in a strage way. He loved matchbox cars but he would just line them up instead of playing with them correctly.

Preschooler:
Started seeing things that weren't there. He would sit in the corner and scream that there were bugs on him. There were none, but he saw them there. There was also "The Bald Lady". He would talk to her in the begining but then he became very afraid of her. He would scream "The Bald Lady is looking at me."

Became a walking encyclopedia. If he heard it once he knew it. We would have the discovery channel on a lot (he still needed sound to function) and he would just absorb everything - even if he wasn't paying attention.

Could not tell the difference between cold and hot, hungry and tired, etc.

Had no empathy. Did not realize that if someone was laughing it meant they were happy and if someone was crying it meant they were sad.

Captivated by math. He could add and subtract by the age of two. Also, very interested in letters and words. He could read by three.

Could not hold two way conversation. Yes - he had a massive vocabulary but he it was just fact based speech. The example I usually give is this, "Gabe, would you like milk or juice," and is answer would be something like, "Anthony Wiggle wears a blue shirt." or "Mommies Volvo has 163 horsepower."

Gabe now:
Gabe was diagnosed at 3 with PDD-NOS. At that point we began to look for treatment. Medical insurance does not cover autism - it is considered a developmental delay. Due to this, the school system typically provides treatment for autism. For Gabe, we were told, "Yes he has a form of autism. Yes it really effects his social and emotional development. He would really benefit for OT since he has many sensory issues (mostly oral and sleep), but his autism has not interfered with his intellectual ablilty to learn. He is, in fact 2-3 years advanced as far as his IQ. Thus, we can not help you. He will fall behind when he hits school and then we will help, but we can't do anything until he falls behind."

I refused to accept that. I looked for all forms of "alternative" treatments. That was when I came accross the Gluten Free/Casein free diet. Being a dietitian I was very against it, but since there are so few treatments you can do on your own I decided to give it a try.

At that point, the only items GAbe would consume were gluten and casein containing items. Thus I thought he would starve to death.

I removed the casein first (milk products). The first day we were casein free was the first night he slept more than three hours and didn't have a night terror. Within three days he stopped seeing the bald lady and stopped feeling the bugs. He had a lot of really weird fears and within two weeks they were gone. He was much more relaxed.

After a month of being casein free I decided to remove the gluten (wheat). This is much harder to do. This was a lot more subtle. He slowly began to be more focused. After two months gluten free he hugged us for the first time. He started understanding the difference between hunger and tired. He began to hold two way conversation. He could tell the difference between hot and cold. He started eating three meals a day and was able to sit at the table with us. His skin rash went away and his stool was usually solid.

By the time he was four he was almost "normal". He just seemed like a super bright four year old. At this point they decided to test him for Celiac disease. In order to test him he had to eat gluten for at least 30 days. He was in the office when the dr. said that so when we left the office he said, "I want McDonald's chicken nuggets. The dr said I could eat those for the next month so I am going to!" That night he had chicken nuggets. The next day he had pizza (which contains milk). The night he had the pizza he spent the next 10 hours in the corner of the living room beating his head on the wall screaming, "The bald lady is looking at me mommy! Make the bald lady go away!" That was 2 1/2 years ago and we have never given him milk since (and the bald lady hasn't come back since!)

We did our 30 days of gluten filled food. He doesn't have celiac disease. In that month he lost his ability to hold two way conversation. His skin rash came back. The diarrhea came back. He lost the ability to tell the difference between hot and cold, hunger and tired, etc. He craved foods high in gluten - that was all he would eat. He head banged again. He wouldn't sleep unless I was touching his feet (only his feet). 30 days of gluten and it took us six months of being back on the diet to get him back to normal.

Gabe is now six. He is in a regular classroom. He has many friends. He transistions well. He is one of the brightest kids in his class. He still needs to fall asleep to the TV. He still is a little fact hound. He still sometimes has a hard time understanding social rules. He doesn't like organized sports - he finds them rude (you are not supposed to take the ball away form someone who has it). He still really doesn't like to be hugged, but he will hug. He is almost "normal", but what is "normal" anyway. I like to tell people that he was able to keep the good parts of autism and get rid of most of the bad parts.

I know this is really long but there were a lot of questions I was coming accross about autism and this was the best way I thought to deal with them.

Angel

 

Thank you Angel for this fascinating information and Gabe's life story! He's sounds like such a smart little guy. His reaction to the dairy and wheat products I found highly interesting. Although we do not have Autism in my family(extended too), I have a nephew (now a teenager) that has OCD and my sister has had to really restrict his diet. It seems to help him too especially (but not exclusively) with the weird fears.

Thanks again for the information about Autism! You really are a great mom! You can tell you care so much about your children!

 

Thanks for taking the time to write all this info out. I also apprecitate you sharing what you went through with Gabe from the beginning. Your insight into life with autism was very touching for me to read.
Sue

 

Wow! Thank you for sharing all of that wonderful info, and your personal story! Amazing.

 

Very amazing! It's extremely obvious that you've put a lot of time and research into Autism. What a dedicated mommy!

 

Thank you for such a detailed account-very informative. What a special little guy you have.

 

Is Cassein the same as whey? Is it just milk?

 

Thanks for sharing - I think it helps to see things from a personal light

 

Angel thank you so much how wonderful to get to know your Gabe he sounds like an pretty awesome six year old.

I linked this to Health Issues and Special Needs Forum where we frequently get questions about autism.

Thank you again

 

Wow, what an amazing story. Wow. I am just going to say Wow.

 

Angel, thanks for sharing your insights into Autism. Gabe is a very lucky young man to have you as his mommy, his defender, willing to do anything to help him cope. I was truly moved by your story. Thanks again!!!

 

Thank you so much for sharing! That is probably one of the most informative and interesting posts I have ever read!

 

Thank you so much for sharing Gabe's story with us. I found it so interesting and enlightening. Like other PPs said, it sounds like you are doing all you can for your little boy. What a great mom! My mom is a nutritionist working for the health dept. as well and so I know how hard it must have been for you to put aside your traditional dietician knowledge and try out the special diet. I'm glad it worked out so well!

Mona

 

Wow, thank you so much for the informative post. You have really done your research!! Your son is so lucky to have you and the fact that you have done your research to find out the best way to help him. His story is fascinating. It sounds like his strict diet has really help him, that is amazing. Thank you for taking the time to post this. This would make a great sticky at the top of the page!!!

 

Thank you so much for the information. He sounds like an amazing boy! And how lucky he is to have such a dedicated and caring parent! Thnaks again!

 

All I can say is that was fascinating to read. He sounds like an incredible little boy and you a wonderful mother. THis was so informative and educational for me. Thank you!!!

 

Oh my gosh, what a long road you've had - but it sounds like you found your way and Gabe is SUCH an outstanding little boy!! Good for you for standing up for him and researching when no one else would help! That is amazing about his diet!

The bald lady gave me goosebumps, I can't imagine what it did to you in real life!

Thank you so much for taking the time to type all of that out and share your story! I think you are an amazing person and mom!

 

I am in total awe of yours and Gabe's story. I am so touched by your perserverance and dedication as a mother. Thank you for sharing this story and hopefully it can provide great insight, hope and help for those in similar situations.

Carina

 

Angel, Thank you so much for sharing your knowledge and your valuable personal insight!!

That was a fantastic post!!

 

What an interesting story you have! What a great and involved mom you are to truly take an interest in the diet idea. I'm sure it wasn't easy in the beginning, but a relief once you found that you could help Gabe relieve some of his fears.

 

All very true. A dear gf of mine has an autistic daughter. She has even more allergies than wheat/dairy. She has allergies to bananas and eggs. No citrus either. She is about to undergo some very rigorous testing so that they can further determine if they will do chelation (sp) with her.

Also, therapy can help tremendously. OT and PT are not enough for some autistic children. ABA therapy has been a tremendous help for my friend's daughter. We never thought that we would hear her speak, but she is slowly learning words and can sign at age 5. She is even working on potty training! She amazes me every time that I see her.

 

That is facinating information. Thank you for sharing. Did you happen to catch "The View" today? The entire show was dedicated to educating the public about autism. Very interesting.

 

Angel, i am an ABA therapist (or was at this point)...anyway, it is great to hear from the parents of these very special children. They have always held a place in my heart and i think that it important that the stigma and judgement be removed from these families who are working so hard to give there children "normal" lives. God Bless you and your family.