Autism Rising

[sora]

I realize this is not directly Celiac related and if mods feel it should be removed I understand.

This is frightening.

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[krystynycole]

It's not really as frightening as it sounds...I teach students with autism and my take on it is that they are finally giving students the correct diagnosis (sounds like many people with ceilac!). Many, many people were diagnosed with ADD or ADHD and/or OCD that sound have been autism. Doctors are now realizing that this. I feel like there is a greater awareness of what the disorder is and the numbers are rising only because there is greater knowledge.

[sora]

It's not really as frightening as it sounds...I teach students with autism and my take on it is that they are finally giving students the correct diagnosis (sounds like many people with ceilac!). Many, many people were diagnosed with ADD or ADHD and/or OCD that sound have been autism. Doctors are now realizing that this. I feel like there is a greater awareness of what the disorder is and the numbers are rising only because there is greater knowledge.

That makes sense. Maybe it will help make the govt. take it more seriously re: funding.

[ravenwoodglass]

Sometimes I wonder if some of these 'diagnosis' that they are labeling children with are really disabilities at all. There is no doubt that those with the most serious forms of autism need to be given all the help possible to achieve a more normal and productive life. But autism has many spectrums and some of the more mild forms, like Aspergers, produce adults that are very productive and very intelligent and high achievers. They may lack a bit in social areas, have a bit more difficulty making friends and would have worn the label of shy nerd in past years. People have differences and that isn't always something that needs a label or intervention. I have to wonder how many of our past scientists and inventor etc. would have been labeled in the past. And the impact those labels and interventions would have had on their discoveries.

[Kjas]

Raven,

Being diagnosed is not a bad thing, it's just like celiac, it depends on your attitude towards it. Some people will use it as a crutch, but those people are probably already using some other excuse as a crutch anyway.

Quite frankly, it helped me stop feeling like a complete alien when I finally had a reason for the way I was since at least then I knew I wasn't crazy and it wasn't all in my head or that I wasn't trying hard enough (which I did plenty of). It helped me develop proper coping mechanisms rather than just trying to be normal until I overloaded which would always leave others confused since they didn't know why I was acting that way. I can't tell you the number of friendships I have lost over the years because they pushed me when I was already on overload and they pushed me to the point that I either had a meltdown or I shut down.

At least now I know what I need to stay calm and focused and have options available to me when I feel like I'm going to start to overload. Sometimes the fact of just knowing you're not crazy or an alien is enough for some people. Just like celiac - at least you know what's making you sick. At least you find a way to cope with it - you take your lunch to work with you when you know you can't find something gluten-free.

I have no doubt many of the great inventors and philosophers etc were in fact Aspies. But equally, I have no doubt that a diagnosis and coping mechanisms would have helped leaps and bounds when it came to their personal relationships.

I would like to point out that it's probably more people with PDD-NOS or Aspies who are actually being diagnosed. As it is, both of those are under-diagnosed or misdiagnosed, particularly in women. Not all autism comes in the low to medium functioning range, which is a common misconception.

[Skylark]

It's not really as frightening as it sounds...I teach students with autism and my take on it is that they are finally giving students the correct diagnosis (sounds like many people with ceilac!). Many, many people were diagnosed with ADD or ADHD and/or OCD that sound have been autism. Doctors are now realizing that this. I feel like there is a greater awareness of what the disorder is and the numbers are rising only because there is greater knowledge.

As with celiac disease and type 1 diabetes, there are some pretty convincing epidemiology studies showing that even the rise in diagnosis is not enough to account for the increase in autism.

The vaccine data was fraudulent so now we have no real idea what's triggering it. I find it frightening.

[sora]

As with celiac disease and type 1 diabetes, there are some pretty convincing epidemiology studies showing that even the rise in diagnosis is not enough to account for the increase in autism.

The vaccine data was fraudulent so now we have no real idea what's triggering it. I find it frightening.

I do wonder because the numbers are so high. Seems pretty high to me for just being better diagnosing. Could be though I guess.

Whatever the reason for the numbers it is still frightening to me. Whether diagnosis or not, the numbers are high.

[Kjas]

Two other things to consider:

1) Autism was not even included in the DMS until 1980 as a diagnosis itself. Before that it was classified as under childhood schizophrenia if it was diagnosed at all.

2) Aspergers Syndrome, Retts and PDD-NOS where not included in the DMS until 1994.

Considering those 2 things alone, is it any wonder the diagnosis rate is on the rise?

[Ninja]

I so agree with you Ravenwood! The question that I feel should always be asked is: are the child's quirks getting in the way of the CHILD living his/her life? If so, a label could certainly improve the quality of the child's life. I don't like that ADHD and/or ADD medication is being given to children who obviously do not have ADHD/ADD. The adults in their lives need to evaluate/re-evaluate the severity of the observed "issues" based on the child's life, not their own, IMHO.

**DISCLAIMER** This post does not include those with serious developmental delays whom should definitely be accurately assessed and given accommodations for. This post refers to those who may be on the cusp or are capable of functioning normally given the right environment/setting.

[krystynycole]

Two other things to consider:

1) Autism was not even included in the DMS until 1980 as a diagnosis itself. Before that it was classified as under childhood schizophrenia if it was diagnosed at all.

2) Aspergers Syndrome, Retts and PDD-NOS where not included in the DMS until 1994.

Considering those 2 things alone, is it any wonder the diagnosis rate is on the rise?

Totally agree!!!

[ravenwoodglass]

The question that I feel should always be asked is: are the child's quirks getting in the way of the CHILD living his/her life? If so, a label could certainly improve the quality of the child's life. I don't like that ADHD and/or ADD medication is being given to children who obviously do not have ADHD/ADD. The adults in their lives need to evaluate/re-evaluate the severity of the observed "issues" based on the child's life, not their own, IMHO.

**DISCLAIMER** This post does not include those with serious developmental delays whom should definitely be accurately assessed and given accommodations for. This post refers to those who may be on the cusp or are capable of functioning normally given the right environment/setting.

Very well put and I agree completely.

[Skylark]

Two other things to consider:

1) Autism was not even included in the DMS until 1980 as a diagnosis itself. Before that it was classified as under childhood schizophrenia if it was diagnosed at all.

2) Aspergers Syndrome, Retts and PDD-NOS where not included in the DMS until 1994.

Considering those 2 things alone, is it any wonder the diagnosis rate is on the rise?

So you think the epidemiologists writing autism prevalence papers have somehow forgotten this? The prevalence has been rising even in the past ten years, and while it may be a matter of better awareness, there are some pretty convincing prospective studies suggesting otherwise. As you point out, the DSM IV (I assume that's what you are talking about when you said DMS) has included autism for longer than ten years so that doesn't explain recent data.

[Kjas]

Prevalence and incidence rates are two different things.

There are just to many factors at play right now to be saying we have any "answers". All we do know that there is a define genetic component.

Most of the current data is skewed in some way. You have to take into account diagnosis methods (which differ worldwide), who is doing the diagnosis's (some countries limit to psychiatrists, others allow psychologists) , those who have been diagnosed later in life since the said definitions were not available then (likely most of the older generations in HFA range before 1980), things like urban vs. rural likelihood of DX, ditto that with terms of things like class, race, gender and socio economic position. You also have about 50% of the DX now being made that are in the HFA / Aspie /PDD-NOS category.

In many ways autism is like celiac disease in the way that while we have some data, we certainly do not have all of it and the data we have is still skewed to some extent. I really do think it is too early to be drawing conclusions yet. Give it 20 years and at least then we will have more reliable data.

[krystynycole]

Prevalence and incidence rates are two different things.

There are just to many factors at play right now to be saying we have any "answers". All we do know that there is a define genetic component.

Most of the current data is skewed in some way. You have to take into account diagnosis methods (which differ worldwide), who is doing the diagnosis's (some countries limit to psychiatrists, others allow psychologists) , those who have been diagnosed later in life since the said definitions were not available then (likely most of the older generations in HFA range before 1980), things like urban vs. rural likelihood of DX, ditto that with terms of things like class, race, gender and socio economic position. You also have about 50% of the DX now being made that are in the HFA / Aspie /PDD-NOS category.

In many ways autism is like celiac disease in the way that while we have some data, we certainly do not have all of it and the data we have is still skewed to some extent. I really do think it is too early to be drawing conclusions yet. Give it 20 years and at least then we will have more reliable data.

Definitely agree on the diagnosis methods!! It definitive has had a great affect on the increase.

Many different types of doctors can diagnosis Autism/HFA/Aspie/PDD-NOS which leads to a variance in thoughts on what the disorder actually looks like. Some people are diagnosed by a regular family practice doctor, others by psychologists, others by a neurologist, others by predication, others by school teams, etc...With some many people diagnosing autism with really a lack of info for so many years it's no wonder that now that we are learning more, they are all starting to be on the same page which leads to more consistent diagnosis' which leads to a high rate of that diagnosis. I read about so many people going to one type of doctor--gastro-- and getting so many different answers for the same disease (celiac)...just think how many more different diagnosis' there are when there are so many more diagnosing it!

[krystynycole]

Sometimes I wonder if some of these 'diagnosis' that they are labeling children with are really disabilities at all. There is no doubt that those with the most serious forms of autism need to be given all the help possible to achieve a more normal and productive life. But autism has many spectrums and some of the more mild forms, like Aspergers, produce adults that are very productive and very intelligent and high achievers. They may lack a bit in social areas, have a bit more difficulty making friends and would have worn the label of shy nerd in past years. People have differences and that isn't always something that needs a label or intervention. I have to wonder how many of our past scientists and inventor etc. would have been labeled in the past. And the impact those labels and interventions would have had on their discoveries.

While I'm sure there are some mis-diagnosis', but there is for every disorder/disease. I do not believe that this is the reason for such high numbers though.

With the label, they are afforded more benefits from their insurance. For example, my nephew has autism and is very high functioning, with a mild form. He does not have an IEP or 504 plan at school and most people would probably think he just a little goofy, obsessive or nerdy. However, because of this diagnosis he was able to be afforded occupational therapy paid for by insurance and was able to find ways to cope in these social areas.

What may not seem like a 'need' for an intervention to the outside world really bothers people with autism. My nephew is able to go and do things, but often got VERY quiet during certain noises and displayed anxiety. While he appeared fine and just a little quirky, an OT was able to help him work out strategies to help him during these situations so he can enjoy them without anxiety. He was not able to play on team hockey until he met his OT because of this...he only played with his dad in the living room....just because he was quirky with sounds so he would loose focus for a few seconds and in hockey every second counts! He also has issues with food...again he was able to attend a food group through OT. Before the food group, his mom was worried about what on earth she could send him for a school lunch because he was good for most of the day, but refused to eat a lot of different foods. How do you transport non-typically school lunch foods? He did fine the rest of the day. No one new he had autism except for those who saw him at lunch.

Another student of mine got straight A's and was different socially. However, his diagnosis was able to get him insurance paid group with other jr. high students with other Aspies so they could talk out their frustrations they came across socially together with the guidance of a social worker. The social worker took much of what they talked about and put together rules every so often that the kids could take with them or review before they left the house for a particular event. You may have thought this kid was pretty good coping on his own, but it was only because a social worker had taken the time to write out rules for him to review before he left the house. Without the reminder he is a totally different kid.

Early intervention is also another tool that has allowed many of the kids who just look quirky be able to successful. Because they were taught VERY young how to cope, they have been able to have a head start. They are now able to grow and "fit in" easier because there were interventions very early for the child. While they might not look like they need a label, does not mean that they need it or once had much severe signs/symptoms.

[mushroom]

I am one of those who believe that labels are not harmful, but actually rather helpful. It is something to hang your hat on, to know that there is a reason for the way you feel, and to learn ways to cope with it. Without the label you just feel "different". To know why you are different, to know there are others like you with that same 'difference', and to know there are coping mechanisms must surely be extremely helpful.

I recently gave the example of the New Zealand educational system deciding that the label "dyslexia" was not helpful, and for years kids who were not learning to read were put in "Reading Recovery" after their first year in school and pulled out of their class two or three times a week for special help from the reading recovery teacher. The other children perceived these dyslectics as being "dumb" and "slow", much worse labels that dyslectic Fortunately, this period of 'enlightenment' has ended and it is once again possible to have dyslexia in New Zealand, although a whole generation of kids grew up not knowing what it was and a whole generation of dyslectics were unnecessarily scarred because of someone's bright idea. I used to work with some of these kids on a volunteer basis and their attitudes toward themselves was rather sad, but I had to toe the party line and not tell them they had a reading disorder.

People tend not to get better with the "wrong diagnosis". Just think how well celiacs recover with the IBS diagnosis. The diagnosis, the label, is important to the treatment, and it is important to let not just the sufferer himself, but others, know that this is something specific, a known quantity, with a known approach, that can be handled in a certain way.

[krystynycole]

People tend not to get better with the "wrong diagnosis". Just think how well celiacs recover with the IBS diagnosis. The diagnosis, the label, is important to the treatment, and it is important to let not just the sufferer himself, but others, know that this is something specific, a known quantity, with a known approach, that can be handled in a certain way.

Exactly! You said it much better than me

We, that are healing and on a gluten-free diet, may not seem like we have a diagnosis until we stray from our diet/treatment! Those with autism are the same...their treatment helps them seem more typically developing than they would without the treatment!

[Ninja]

It is my opinion that the label only works because of the way our culture perceives differences. If an entire school district changed the way their kids viewed geeks/nerds or kids with LD's and just allowed the child to be him/herself giving assistance when required, things might be different... Labeling is "playing the game." Of course playing the game is helpful for those IN the game.

I, myself, have various learning disabilities which were not identified until I was halfway through high school. I know full well the difficulties of facing school without any understanding from peers and teachers

[krystynycole]

It is my opinion that the label only works because of the way our culture perceives differences. If an entire school district changed the way their kids viewed geeks/nerds or kids with LD's and just allowed the child to be him/herself giving assistance when required, things might be different... Labeling is "playing the game." Of course playing the game is helpful for those IN the game.

I, myself, have various learning disabilities which were not identified until I was halfway through high school. I know full well the difficulties of facing school without any understanding from peers and teachers

[Ninja]

I am not in any position to judge whether or not those labels were/are accurate or not. I was/am simply relaying information I've been told from them:

In one case, the Aspergers was diagnosed on the basis of a one visit/consultation with a psychologist and the observation of poor social skills.

The ADD was diagnosed based on behavior inside of the classroom: a very unsuitable environment for this particular person. There are many other reasons that someone might have poor social skills or difficulties paying attention in a place that is not engaging or encouraging. Instead of labeling the kids, we could try changing the environment — who knows how many other kids could benefit from the changes...

/end-IMO

~Laura

[beebs]

Everybody can agree that celiac is on the rise, its been proven in studies, that autoimmune diseases are on the rise -again prove in studies, cancer, heart diseases, asthma, mental illness, allergies etc etc. I wonder why it is so difficult to believe that ASD is possibly on the rise too.

[mushroom]

You can add diabetes to that mix also, actually, when you come to think of it, just about everything that has been associated with gluten is on the rise

[beebs]

Labels, I can see what you mean about labels, but lots of high functioning autistic people still need help, they need the label in order to access that help. I personally don't think labels are bad.

[Ollie's Mom]

I have AS and was diagnosed as an adult. For me the label gave me some peace because I now understood why and how I was so different from all the "neurotypicals" around me. Before, I thought that everyone else was just way better at handling the stress off social situations, loud noises, smells, lights, textures, etc.

I didn't access any special services ( I've learned my own coping mechanisms over the years) but I would have had I been diagnosed when still in school.

[lucky97]

I've been in special ed. for 20 years. Some of the things that pass for "autism," and I am FULLY aware of what things look like all over that spectrum, I think "REALLY?"

1 in 88 I've heard recently??? Come on.