Autism - what do you think?

[headoflife]

Sorry, really long!

I am the parent of a wonderful DS12 with Aspergers. I also have a Masters degree in school psychology. When I went to school they tought that autism was a very rare disorder, with an incidence of about 1 in 10,000. I understand that the diagnostic criteria for PDD has increased, but this alone can not result in the increase to 1 in 150. I am not sure what the causes are for autism, though I am fairly certain that it has a genetic component. As for the other factors, I lean toward a beleif in environmental causes (like environmental mercury). I have also read a study that indicates that use of Pitocin to induce labor may be a trigger. This correlates with the deficit in oxytocin that has been found in some autistic individuals. Unfortunately you can not prove a negative, so until they find the causes of autism anything is suspect. I beleive that vaccines may be a cause in some individuals, but at this point I don't believe it is the mercury that is the problem. On the Oprah show, a couple of the guests indicated that their children were ill prior to the onset of autistic symptoms, so perhaps it is simply a reaction to the germ content of the vaccine.

PDD/autistic spectrum diagnosis may be the flavor of the month, but that does not mean that these children do not need the services the receive. I diagnosed my son when he was 2 years old, but that was becaue I knew all the symptoms from my training. He was evaluated by our school district at 2.5 and began receiving services due to "developmental delay" though his only significant delay at that time was in social language. I did not take him for an official diagnosis until he was 6. DS is still classified as autistic, but the only services he receives are related to his executive functioning issues. (He is horribly disorganized, which goes hand in hand with Aspergers.) I believe he is doing as well as he is in part because of the early intervention he received, and without some diagnosis he never would have gotten that.

I am hopeful that he will grow up to be one of those quirky, brilliant, funtional happy, scientists that many people believe are on the spectrum, but with his impaired social skills, I do worry. I am blessed to be able to consider the possibility that my child will live independently. Many parents of children on the spectrum, even those with high functiong autism are not so fortunate. If we do not find the causes and best treatments for this we as a society will be unable to keep up with the cost of caring for the ballooning number of autistic adults we will have. We are already finding the educational system overwhelmed by the challenge.

FYI: Nightline did a piece on Wednesday night on people with Aspergers and their unique challenges. It was very well done.

 

[katerkat]

Many pediatricians do not consider kids to have language delays until they are over 2 years old and tell parents they will "grow out of it" or be a "late talker." This could possiby be the case, but in my experience many children are diagnosed with autism after 2 years because their language is so severly delayed and the doctor finally refers them for an evaluation. Early intervention is crucial! Children learn more in the first 3 years of life than at any other time- they establish language and social communication thich is lacking in autism. I wish more pediatricians were proactive in referring for speech and language evaluations rather than having a "wait it out" approach.

See, now I preferred that my doctor said "wait and see" at Russ's 18 month appointment when he said all of three words. The poor boy even went through a major head-slapping phase when he was so frustrated about not talking...but then when he was about 22 months old, it all clicked together and he's learned over 50 words in 2 months. (Including some choice words from his father, less than 24 hours after Daddy came home from deployment! Daddy didn't believe Mommy when she said we have The Repeater.) Pushing him through evaluations at 18 months of age would have been frustrating to him and all of us - it's something I would have considered at two years old, had he not started talking, but not at 18 months. And I do know that early intervention is important, as he was diagnosed with torticollis at two months old and discharged from PT at a year old because we were proactive in that issue. I just don't think boys, with few other symptoms, not talking at 18 months is a problem quite yet. (My boy, specifically, but it's well known that boys usually talk later than girls.)

 

[Ciao Mickey]

I was kinda sorta watching Oprah yesterday. I was working while it was on and frankly, it was making me cry so I kept wandering away.

Have you been affected in any way by autism? (I have a nephew).

Are you like me, and can't help believing it's not some kind of conpiracy when they say it has nothing to do with immunizations, the HUGE increase in recent years (more common than breast cancer, diabetes and heart disease?????)

My husband was home and we both watched it because he has a friend with twin sons and one is autistic and the other son is not.

I saw something on awhile ago when they first announced the new stats on autisim. There was a doctor giving an interview and he said that, contary to all reports, autism is not on the rise from years ago and the reason for the high numbers today is because everyone labels their child autistic instead of mentally ********.

He had a graph that showed how the rate of autisim has gone up while the rate of mental retardation has gone down. He also said that many parents label their kids autistic because they want their kids to get extra help in school and that years ago these same kids would just be labeled "quirky."

Please don't anyone attack me--I am just trying to alert people to what some doctors are saying about autism.

Personally, what's happening today scares me.

I firmly believe that there is something environmental that might be causing some of the cases of autisim. There are so many chemicals polluting our waters, land, and in our foods that is harming our DNA.

When I was pregnant with my first child a friend of mine also worked at the same company, in the same department. We both had the same exact due date.

Towards my last months we shared the same job because we were both put on half-days due to pre-eclampsia. We were also friends outside of the company so we hung out together.

Her son has a brain tumor and my son has neurological problems. A coincidence?

I brought up my concerns with the pediatric neurologist and he said just try to prove something like that happened. That it's almost impossible to show that something affected us both during our pregnacy.

Something we were in contact with affected our babies.

 

[Ciao Mickey]

The largest studies that have been used to disprove the vaccine/autism link have not been funded by the "drug companies". They've been conducted by organizations like the UN (WHO), NIH, and similar governmental bodies around the world.

If you want to look at recent areas of scientific study that have actually shown promise at pointing to the likely causes, then you need to read the latest findings about the genetic causes of autism and the likely effect our society's delay in childrearing (the age of the father in particular seems to be a likely factor) may be playing. However, these promising findings aren't getting a lot of play on the Internet because people prefer to focus on external causes that can be laid at the feet of others.

Older women have older eggs because they are born with them, but I thought men's sperm is "made fresh" each time they have to use some.

 

[meandtheguys2]

I think that you need experienced medical personell involved in this diagnosis. This is from personal rather than professional experience. My girlfriend's child had all of the classic autism behaviors, plus those of tourettes. Thankfully, her doctor preformed extensive blood tests that showed him terribly high in lead and arsenic. (No clue where he picked up either, but we do live in pollution valley.) Once the poisoning was dealt with (it took a year and a half!), he was/is still a bit of a padiddle, but has none of the other behaviors.

 

[shortbun]

I'm the mom of a newly diagnosed High functioning autsitic child and I have to say that i was disappointed in Oprah too for only showing the most severe children.

As for diagnosis...it took me over two years to finally get someone to pay attention to his symptoms. I had a developmental pediatrician tell me that I just need to parent him better. Finally someone listened to my concerns and referred him to a psychologist who tested him.

I don't know about vaccines. both of my boys had their vaccines and only one is on the spectrum (at this point anyway!!). currently I blame his father's side of the family!

My nephew is a high functioning Aspie with some other development issues and although Oprah focused on the severe end of the spectrum, I was happy that Autism was getting face time at all. Did you guys see "The View" on Friday? They had some much higher functioning children and one adult, professor-author who is pretty obviously an Aspie and has written about her life with autism. I am so greatful to see Autism getting this attention. My poor nephew is 13 and in a small suburban school system that has him in a MRDD classroom because they are clueless about what to do with him. He is ready to explode. He's OCD and socially inept because his pediatrician said, "there's nothing wrong with this child" even though his parents kept taking him to see the doctor due to slow speach, toe walking, parroting and unusually strong and unexplained fear. Thus, he got NO early intervention nor social training and is struggling. His father is battling with the school system to mainstream him but they are VERY skeptical. We maintain that it is better for him to fail in regular classrooms than to be labled MRDD when he is NOT MRDD at all. My nephew has started acting out in school and his parents have needed to intervene on several occassions just to keep him in school. I'm not sure why-he wants out of that classroom and in with his friends in regular classes. Small schools can not accomodate children with special needs unless that's what they specialize in. It's heartbreaking.

 

[shortbun]

Also, as far as what causes autism...so many causes and probably the acuumulation of all of them. Growing population, water table being poisoned with cleaning solvents, pesticides and so forth. The very food that our children are eating is now mutated by man and the animals grown to feed us are treated with so many drugs to keep them healthy due to their poor living environment....another possibility. Immunizations have increased enormously. Chemlawn-everyone spraying poison everywhere just so the grass in our yards is one damn uniform color. Good grief! What do you expect to happen? Somewhere,all this chemical treatment HAS to show up in society.

 

[belle&beast]

See, now I preferred that my doctor said "wait and see" at Russ's 18 month appointment when he said all of three words. The poor boy even went through a major head-slapping phase when he was so frustrated about not talking...but then when he was about 22 months old, it all clicked together and he's learned over 50 words in 2 months. (Including some choice words from his father, less than 24 hours after Daddy came home from deployment! Daddy didn't believe Mommy when she said we have The Repeater.) Pushing him through evaluations at 18 months of age would have been frustrating to him and all of us - it's something I would have considered at two years old, had he not started talking, but not at 18 months. And I do know that early intervention is important, as he was diagnosed with torticollis at two months old and discharged from PT at a year old because we were proactive in that issue. I just don't think boys, with few other symptoms, not talking at 18 months is a problem quite yet. (My boy, specifically, but it's well known that boys usually talk later than girls.)

In your case, it worked out, but many other children do not have the same result.

I worked in early intervention for 3 years and we would receive many referrals for kids that were not talking at 2 or 2 and a half. The parents usually trusted their doctors to wait it out and then there still was very little communication. Then speech and language suddenly become a high priority and we have lost valuable time. I now work in a preschool setting and kids come to us at 3 with little to no language and parents are surprised that they are so far behind because their doctors never had a concern.

As you said, you had PT services. Many doctors recognize the physical issues, but put off the language issues. I just feel that it certainly does not hurt to evaluate a child and find out they are within the average range, but it can cause further delays if a child is not evaluated and needs the intervention. And you are right, boys are usually later to talk than girls, but boys also have more speech and language delays than girls.

 

[freckles and boo]

In your case, it worked out, but many other children do not have the same result.

We waited and I regret it. My husband was a late talker so we figured that she might be, too. Our older daughter was a jabberbox so we figured maybe the little one couldn't get a word in. She reached her physical milestones right on target so no red flags went up with our pediatrician. It was at about 2-1/2 that I became really worried. I very much wish I had not waited. Now she is almost five and her language has blossomed with much OT and SLT. But she is still autistic and she is still paying for time we lost by waiting. Some people seem to thing that a wrong diagnosis is the worst thing that could happen. Actually, even a premature diagnosis of autism is okay because if the child isn't autistic, they will have received services, made progress and the correct course will eventually become clear. Diagnoses change. Children are dynamic. The most important thing is to not wait if you have ANY concern. For some kids it will all be part of their normal development but for others it is a sign of significant delay.

 

[belle&beast]

We waited and I regret it. My husband was a late talker so we figured that she might be, too. Our older daughter was a jabberbox so we figured maybe the little one couldn't get a word in. She reached her physical milestones right on target so no red flags went up with our pediatrician. It was at about 2-1/2 that I became really worried. I very much wish I had not waited. Now she is almost five and her language has blossomed with much OT and SLT. But she is still autistic and she is still paying for time we lost by waiting. Some people seem to thing that a wrong diagnosis is the worst thing that could happen. Actually, even a premature diagnosis of autism is okay because if the child isn't autistic, they will have received services, made progress and the correct course will eventually become clear. Diagnoses change. Children are dynamic. The most important thing is to not wait if you have ANY concern. For some kids it will all be part of their normal development but for others it is a sign of significant delay.

Hugs to you and your family. Don't feel badly about waiting, that is in the past and you have a lot to look forward to! Just look to the future and you will be amazed at how far she will go. That is what I love about kids with autism. Every day there is a new challenge and when we have a success, we all feel we are on top of the world!

 

[freckles and boo]

Hugs to you and your family. Don't feel badly about waiting, that is in the past and you have a lot to look forward to! Just look to the future and you will be amazed at how far she will go. That is what I love about kids with autism. Every day there is a new challenge and when we have a success, we all feel we are on top of the world!

Thanks! She is an smart and funny kid and she surprises us every day with the connections she makes and the ideas she communicates. I do feel guilty about not getting her help sooner, but guilt isn't productive so I put my energies into the here and now. She has spent the last two years in special ed/early childhood and recently moved to a school that is intensive and specifically geared toward kids with her needs. She is surrounded by adults who are both compassionate and passionate about what they do (like you!). She will be five in a couple weeks and we hope that by second grade she will be able to be in a mainstream classroom, even if it is with an aide. It is an ambitious goal and I don't know if it will happen but two years ago we could never have imagined it.

 

[LJC1861]

Every day there is a new challenge and when we have a success, we all feel we are on top of the world!

I am an administrator for 2 of 5 group homes in the Asheville area serving teenagers and adults with Autism. I have 11 in my 2 homes combined and they are the most wonderful young people. We celebrate the small miracles each and every day. I was over the moon with happiness when J looked at me and said "Hi Linda" for the first time. At that point I had been working with him for over a year. It makes me laugh when H looks at my feet and lets me know what color Crocs I am wearing that day. We both have a good laugh when I am wearing my New Balance sneakers that match hers....she loves that! The first time that M rinsed her hair with a plastic cup while we were washing it the entire agency celebrated. When R went an entire week without having an aggression I cried. He wanted to know what made me cry and he seemed surprised when I told him it was because I was proud of him. I could go on and on about these kids.......they have truly changed my life.

I learn from them each time I am with them. I never know what kind of a day I am going to have when I get to work, but I do know that it largely depends on me being open to their spirit, presence and lessons. It seems that when I am really tired, stressed or feeling burnt out that THAT is when the small miracles happen.

I wonder what I will learn on Monday.

Linda

 

[arminnie]

The very food that our children are eating is now mutated by man and the animals grown to feed us are treated with so many drugs to keep them healthy due to their poor living environment....another possibility.

I am very concerned about our food supply. I also cannot believe what people choose to eat these days - processed, processed and then processed some more with ingredients no one can pronounce or spell.

I have no idea what causes autism (could probably win some awards if I did), but it just can't be healthy for a generation to grow up on processed chicken nuggets and boxed mac 'n cheese.

Disclaimer: I've been personally involved in the natural foods industry for the past 25 years. The founder of Whole Foods is a family friend, and yes I do own their stock.

 

[katerkat]

In your case, it worked out, but many other children do not have the same result.

I realize that, and I know I don't have a tremendous amount of experience in the field, but... A boy, not talking MUCH at 18 months is different (to me) than a boy, not talking at all at 2 years, or regressing at any point. Russ said a few words at 18 months, and I was getting worried at 21 months, especially with the head-smacking and the fact that he did fail a hearing test at birth (but passed it a few days later.) But for him, something just clicked a couple months ago and now I can't get him to shut up.

I guess what I'm saying is - yes, early intervention IS important, but there can be interventions that are TOO early.

 

[minkydog]

I am very concerned about our food supply. I also cannot believe what people choose to eat these days - processed, processed and then processed some more with ingredients no one can pronounce or spell.

I have no idea what causes autism (could probably win some awards if I did), but it just can't be healthy for a generation to grow up on processed chicken nuggets and boxed mac 'n cheese.

Disclaimer: I've been personally involved in the natural foods industry for the past 25 years. The founder of Whole Foods is a family friend, and yes I do own their stock.

I'm also very concerned about our nutrition. I don't know if there is a connection with autism specifically, but there are so many other illnesses connected to our diets, it would behoove us all to eat better. When DH developed serious heart & lung disease 3yrs ago we all had to have a crash course in eating the very low-sodium way. Pure hell for about 3wks. But I eventually learned to cook with fresh foods, without salt, with herbs. I learned to read labels meticulously and now my kids will actually eat (and enjoy!) a mediteranean low-sodium diet. I don't make the kids leave off salt, but they usually do. They have retrained their taste buds.

Of course the pay-off is, DH hasn't been in active congestive heart failure in 2-1/2 yrs, he's maintaining his wt, his cholesteral is 123, mine is 147, and none of the kids is overweight. I can't tell you the last time i made dinner from a box or a can and it's not as hard as you think. We eat more simply now, without much sauce or souped up veggies, and we find that we like it this way.

Off my soap-box. Gotta get to Whole Foods for more veggies

 

[belle&beast]

I realize that, and I know I don't have a tremendous amount of experience in the field, but... A boy, not talking MUCH at 18 months is different (to me) than a boy, not talking at all at 2 years, or regressing at any point. Russ said a few words at 18 months, and I was getting worried at 21 months, especially with the head-smacking and the fact that he did fail a hearing test at birth (but passed it a few days later.) But for him, something just clicked a couple months ago and now I can't get him to shut up.

I guess what I'm saying is - yes, early intervention IS important, but there can be interventions that are TOO early.

Well, I would always err on the side of caution- I have seen too many kids go without the intervention because of the pediatrician's lack of referral. It may just be where I live, but we see kids all the time that needed to have treatment long before they received it. Plus, I also believe that many parents (especially moms) have an instinct about these things and they need to follow their instincts rather than wait for a doctor if they are uncomfortable with their child's development.

 

[belle&beast]

Regarding diet, a friend of mine has a 12 yo DS with autism. She has him on a gluten free diet and it makes a world of difference in his behavior. He is severely handicapped and uses a low-tech device for communication, but when his diet is under control he engages with others much more frequently.

I also wonder about medication. We had a developmental pediatrician recently leave our area, but he prescribed prozac for almost all of the children with autism that he followed. From what I understand, he was conducting an efficacy study with prozac and autism. I actually saw both positive and negative results- some were lethargic, while it improved others' attention. Just wondered if anyone else had experience with prozac and kids with autism.

 

[Blondie]

What do I think? I do not think it's related to immunizations. I do think it could be enviromental. I think they need to dig deeper as in how many ultrasounds did the mother have prenatally. What kind of prenatal vitamin was she taking. What was her diet like? Could autism be related to drinking diet soda with Nutrasweet?

As previously stated many pages back, our children are exposed to far more chemicals and processeds food than we ever were. The answer is out there somewhere.

 

[KimR]

As previously stated many pages back, our children are exposed to far more chemicals and processeds food than we ever were. The answer is out there somewhere.

But on the other hand (and this is puzzling to me), pregnant women are taking far better care of themsleves now than they did 20 or 30 years ago. Back then pregnant women drank and smoked without thinking twice about it. My Mother drank heavily when she was pregnant with me and despite her claims of 'and see, you turned out fine', I do think I was affected to some degree. Worse, DHs mother was constantly on meds - which ones, I have no idea. All I know is she told me that throughout her pregnancy she took 'uppers' during the day for energy and 'downers' at night to sleep. She didn't know any better. So it seems that if anything, neurological disorders such as autism should be decreasing due to better prenatal care. Of course, I realize there are obviously other factors involved but it does seem odd to me.

 

[jodifla]

We waited and I regret it. My husband was a late talker so we figured that she might be, too. Our older daughter was a jabberbox so we figured maybe the little one couldn't get a word in. She reached her physical milestones right on target so no red flags went up with our pediatrician. It was at about 2-1/2 that I became really worried. I very much wish I had not waited. Now she is almost five and her language has blossomed with much OT and SLT. But she is still autistic and she is still paying for time we lost by waiting. Some people seem to thing that a wrong diagnosis is the worst thing that could happen. Actually, even a premature diagnosis of autism is okay because if the child isn't autistic, they will have received services, made progress and the correct course will eventually become clear. Diagnoses change. Children are dynamic. The most important thing is to not wait if you have ANY concern. For some kids it will all be part of their normal development but for others it is a sign of significant delay.

IMO, a wrong diagnosis of autism IS NOT OK!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!


I wouldn't want to be treated for Parkinson's Disease if I had cancer. They need specific treatments, and while some treatments might overlap, what's good for one medical issue isn't always good for another....and in fact might really harm you.

Putting a child who isn't autistic through an ABA program for example, could be horrible.

We started getting services for our son before he turned 2, because we recognized his speech was behind. It was when we started dealing with the EI team and ill-informed teacher that we started to run into real trouble. We ALWAYS dealt with my sons symptoms, what we rejected was the label, especially when we felt it was wrong.

Luckily, I did my research, and we found a place that could give us a true diagnosis. Now we have a game plan for the future.

If a diagnosis sounds right to a parent, then that's truly important. Parents know their kids best.

But there are plenty of school system EI teams out there that aren't sophisticated/well-educated enough to make proper diagnosis of ALL children. They can perhaps diagnose many of them, but children with unique issues will get sent on the wrong path if parents aren't careful and do their research.