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Autism Rising


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42 replies to this topic

#16 mushroom

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Posted 01 April 2012 - 12:56 PM

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 :o 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.
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#17 krystynycole

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Posted 01 April 2012 - 01:32 PM

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 :D

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!


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#18 Ninja

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Posted 01 April 2012 - 01:55 PM

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 feeling dumb and absolutely worthless. The repercussions from misdiagnosis or missed diagnosis can haunt one for a lifetime. On the other hand, I know quite a few kids who were diagnosed with Aspergers or ADD and did NOT actually have either one. For them the labels only exacerbated their difficulties fitting in not because others treated them poorly but because the dx meant that "they had something wrong with themselves." In other words, the dx conflicted with their perspectives of themselves.

Accurate diagnosis is what we all want and strive for, but in the face of misdiagnosis or no diagnosis I feel the better route is no diagnosis, provided the parent or person is willing and able to get their needs met. The latter statement, however, does not apply to those who have serious developmental delays/disorders, IMO.
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#19 krystynycole

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Posted 01 April 2012 - 02:06 PM

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 feeling dumb and absolutely worthless. The repercussions from misdiagnosis or missed diagnosis can haunt one for a lifetime. On the other hand, I know quite a few kids who were diagnosed with Aspergers or ADD and did NOT actually have either one. For them the labels only exacerbated their difficulties fitting in not because others treated them poorly but because the dx meant that "they had something wrong with themselves." In other words, the dx conflicted with their perspectives of themselves.

Accurate diagnosis is what we all want and strive for, but in the face of misdiagnosis or no diagnosis I feel the better route is no diagnosis, provided the parent or person is willing and able to get their needs met. The latter statement, however, does not apply to those who have serious developmental delays/disorders, IMO.


How do you know they do not have Aspergers or ADD???
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#20 Ninja

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Posted 01 April 2012 - 03:41 PM

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
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#21 beebs

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Posted 05 April 2012 - 06:37 PM

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.
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#22 mushroom

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Posted 05 April 2012 - 07:50 PM

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 :rolleyes:
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#23 beebs

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Posted 05 April 2012 - 09:10 PM

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.
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#24 Ollie's Mom

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Posted 06 April 2012 - 09:25 AM

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.
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#25 lucky97

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Posted 07 April 2012 - 05:40 AM

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.
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#26 beebs

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Posted 07 April 2012 - 09:19 PM

lucky97 do you say 1 in 110 people have celiac "come on" "I mean really", you may work in special ed, but you are not a specialist in ASD (obviously) so how would you know what is and is not Austism - or you honestly saying that you think you know better than the specialist that diagnosed those people?? :rolleyes:
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#27 alex11602

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Posted 08 April 2012 - 07:19 AM

lucky97 do you say 1 in 110 people have celiac "come on" "I mean really", you may work in special ed, but you are not a specialist in ASD (obviously) so how would you know what is and is not Austism - or you honestly saying that you think you know better than the specialist that diagnosed those people?? :rolleyes:


I think that in some instances it could be misdiagnosed if the specialist did not have the whole story. I know someone who was diagnosed with autism because he was antisocial, aggressive at times and just didn't have the skills that a child his age should have. The specialist that diagnosed him and pumped him full of meds is unaware that this boy is like he is because his mother can't stand him and he is just angry. So I think that without all the information misdiagnosis can be made. Of course that is just one case, but it is sad because this boy is on a bunch of meds because he is autistic when he really doesn't need to be.
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#28 Ninja

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Posted 08 April 2012 - 10:49 AM

Something else to take into account: specialists don't always act or diagnose like specialists should... Look at the trouble people go through with celiac...
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#29 beebs

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Posted 08 April 2012 - 03:42 PM

I think there may be a country to country thing here, you can't just diagnose autism here, you have go to a number of different specialists here, its actually quite a long and tedious process. But still - at the end of the day, special Ed teacher is not the same as a specialist, and if going though this process has taught me anything then yes - ASD is on a scale, no to people are alike, they all have strengths and weaknesses just like anyone else. It can be mild or severe and every shade in between. And with early intervention - a child who was diagnosed with quite bad ASD, given the right services can be almost completely normal when they are older. So that whole Scoffing over kids with ASD etc, just proves to me that lucky -doesn't know anything at all about ASD.

Having said that - there are of course misdiagnoses, just as there are with everything in life. Are you guys honestly saying that you expect 100% diagnosis rate? Because science just isn't there yet.
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#30 Ninja

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Posted 08 April 2012 - 05:37 PM

I totally agree about the benefits of diagnosis!! It can change lives.

It's not so much the misdiagnosis rate but the way the misdiagnosis is handled for me: denial from the specialists, closed minded thinking, little to no collaboration, etc. Of course this isn't the case with all.
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