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magz
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12 Mar 2018, 5:27 am

I think our community agree that ASD is too broad of a label, it has several dimensions.
What are your views of the said dimensions? What do you think to be separable conditions that fall into this label?

My own thoughts are:
1. Lack of a "natural social intuition", as my therapist named it. I think of it as the core of Asperger's, it's enough to present Asperger's when you have this and no other issues.
It may be something imprinted deeply into one's brain, I wouldn't like a cure for it but I do welcome research on it. I think of this issue as a part of healthy diversity and opt for acceptance of this.
2. Sensory issues. I don't really know how they form, don't know of any good research on the topic (do you?)
I sometimes speculate that they come from the above, as ones with no "crowd thinking hardware" do not naturally regulate their sensitiveness by learning "normal" and "disturbing" states of senses from their societes.
But that's just a wild guess.
3. Number of dys-somethings like dysgraphia, dyslexia, dyspraxia, prosopagnosia, auditory processing disorder, etc. I doubt there are cures for them but why not try to search. Also, technology can help living with them.
4. Psychological effects of being different from the early childhood. Include anxiety, depression, traumas, history of abuse, mental illnesses. Should be treated and prevented whenever possible. Understanding of the difference between them and the neurological differences needs to be developed.

I know there are symptoms like speech delay or something but I think speech delay may be caused by number of causes and I'm very strong for switching from looking at symptoms into looking at causes. You know, there can be billion of causes of a knee hurt so your knee hurt needs one of a billion of possible treatments. Why psychiatry didn't come to this yet?


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Dear_one
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13 Mar 2018, 8:18 am

In general, I have found professionals hopelessly confused by even two co-existing conditions. I think the whole model for diagnosis should not be a vast switchboard with one plug misplaced, but a vast mixing board, with sliders for everything that can be changed.



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13 Mar 2018, 9:48 am

Dear_one wrote:
In general, I have found professionals hopelessly confused by even two co-existing conditions. I think the whole model for diagnosis should not be a vast switchboard with one plug misplaced, but a vast mixing board, with sliders for everything that can be changed.


That's a good analogy. I would love to see diagnostic reports that show a systematic analysis of people's traits, similar to a sensory profile, which is a good start. This would be incredibly helpful. I've seen so many attempts to divide autistic people into subgroups, but I find there will always be people who fit several categories. The sliders are more realistic.

I suspect one of the things that makes ASD so easy to self diagnose is that it involves issues that seem unrelated. I remember when I first ran across info on Asperger's. I was gobsmacked that the sensory issues, the clumsiness and social issues were somehow related. I thought I was just weird to have all this wrong with me, and I had no idea there existed other people who had the same combo of issues.


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13 Mar 2018, 9:50 am

We are very "individual" in our presentation.

People should be treated on an "individual" basis, rather than merely on the basis of a diagnostic manual.

The diagnostic manual is useful as a framework----but not necessarily for individuals.



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13 Mar 2018, 12:50 pm

This is not quite what you are asking but below are my thoughts on assessment from our perspective. In terms of the spectrum one of the biggest problems I have is how it is just a big lump on one side ASD and a big lump on the other NT - it doesn't seem right at all, are there people in the middle with one foot either side? Is it that finite a cut off point? Doesn't it make more sense that the traits are found across humanity but in some individuals they are found in certain clusters and in more extreme ways? I am unsure. But I agree with above posters that looking at individual traits is the way forward and maybe that is the way it is going. We didn't get a specification level but were rather told there is no way all the different traits could be summed up by one level.

(1) What is autism and what is mis-managed autism:
I guess one main thing I have noticed from our own scenario is that the extreme symptoms and externally visible factors (like behavioural problems, extreme demand avoidance etc.) that eventually lead people to seek a diagnosis are not autism per se. They are burnout or stress from having autism. I think very many parents or professionals wait for those symptoms to get totally out of hand before they seek help / or before GPs offer help. In particular with regard to girls where things have to get so severe to even be referred on. Professionals need to be aware of the subtle differences and changes that they might expect to see in someone at the high functioning end of the spectrum. For example, keep an eye on high performing individuals, people with social struggles, anxiety, and eating disorders etc. look for clues before things get too much.

(2) Offer occupational therapy as standard for people with suspected autism, to sort out sensory issues and get a full sensory profile early on as it can make such a huge difference.

(3) Give people help when they need help not only once they have a diagnosis. The hardest period for people (in particular parents, but also individual adults seeking help) might be the period before diagnosis. I experienced rudeness, ignorance, distrust etc. as I sought diagnosis for my daughter. Alongside a general sense of just feeling like I was drowning everyday trying to get on top of her behaviour and sort out her anxiety and demand avoidance. Diagnosis has made life easier for me and her. I have got a grasp of things now. It was harder before and that is when I was all alone fighting the stupid system every day - the system that should have been working with me and helping me!

(4) Get more information into the public domain about what high functioning autism/asperger's looks like, in particular in girls. My daughter talked at 6 months and was exceptionally early in most things, all the public information out there is geared at very typical symptoms of autism and given that everyone is different and an individual this is unhelpful.


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Last edited by elsapelsa on 13 Mar 2018, 2:12 pm, edited 1 time in total.

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13 Mar 2018, 2:01 pm

underwater wrote:
Dear_one wrote:
In general, I have found professionals hopelessly confused by even two co-existing conditions. I think the whole model for diagnosis should not be a vast switchboard with one plug misplaced, but a vast mixing board, with sliders for everything that can be changed.


That's a good analogy. I would love to see diagnostic reports that show a systematic analysis of people's traits, similar to a sensory profile, which is a good start. This would be incredibly helpful. I've seen so many attempts to divide autistic people into subgroups, but I find there will always be people who fit several categories. The sliders are more realistic.

Yeah, that sounds like a good way to specify the individual. I have always wanted more subgroups, but the sliders things makes sense.


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magz
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14 Mar 2018, 5:58 am

Dear_one wrote:
In general, I have found professionals hopelessly confused by even two co-existing conditions. I think the whole model for diagnosis should not be a vast switchboard with one plug misplaced, but a vast mixing board, with sliders for everything that can be changed.

I like it. Do you think of some specific sliders or just have the general idea of it?


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magz
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14 Mar 2018, 6:04 am

elsapelsa wrote:
This is not quite what you are asking but below are my thoughts on assessment from our perspective. In terms of the spectrum one of the biggest problems I have is how it is just a big lump on one side ASD and a big lump on the other NT - it doesn't seem right at all, are there people in the middle with one foot either side? Is it that finite a cut off point? Doesn't it make more sense that the traits are found across humanity but in some individuals they are found in certain clusters and in more extreme ways? I am unsure. But I agree with above posters that looking at individual traits is the way forward and maybe that is the way it is going. We didn't get a specification level but were rather told there is no way all the different traits could be summed up by one level.

(1) What is autism and what is mis-managed autism:
I guess one main thing I have noticed from our own scenario is that the extreme symptoms and externally visible factors (like behavioural problems, extreme demand avoidance etc.) that eventually lead people to seek a diagnosis are not autism per se. They are burnout or stress from having autism. I think very many parents or professionals wait for those symptoms to get totally out of hand before they seek help / or before GPs offer help. In particular with regard to girls where things have to get so severe to even be referred on. Professionals need to be aware of the subtle differences and changes that they might expect to see in someone at the high functioning end of the spectrum. For example, keep an eye on high performing individuals, people with social struggles, anxiety, and eating disorders etc. look for clues before things get too much.

(2) Offer occupational therapy as standard for people with suspected autism, to sort out sensory issues and get a full sensory profile early on as it can make such a huge difference.

(3) Give people help when they need help not only once they have a diagnosis. The hardest period for people (in particular parents, but also individual adults seeking help) might be the period before diagnosis. I experienced rudeness, ignorance, distrust etc. as I sought diagnosis for my daughter. Alongside a general sense of just feeling like I was drowning everyday trying to get on top of her behaviour and sort out her anxiety and demand avoidance. Diagnosis has made life easier for me and her. I have got a grasp of things now. It was harder before and that is when I was all alone fighting the stupid system every day - the system that should have been working with me and helping me!

(4) Get more information into the public domain about what high functioning autism/asperger's looks like, in particular in girls. My daughter talked at 6 months and was exceptionally early in most things, all the public information out there is geared at very typical symptoms of autism and given that everyone is different and an individual this is unhelpful.

I think you attacked the other dimension of the question: what could be improved with specialists' attitude. I don't have much thought on this because I didn't get an official diagnosis, only an obvious misdiagnosis from a specialist. So my expirience is:
(0) Psychiatrists should know more about autism, consider this possibility and develop tools to diagnose it in adults.


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14 Mar 2018, 6:25 am

magz wrote:
Dear_one wrote:
In general, I have found professionals hopelessly confused by even two co-existing conditions. I think the whole model for diagnosis should not be a vast switchboard with one plug misplaced, but a vast mixing board, with sliders for everything that can be changed.

I like it. Do you think of some specific sliders or just have the general idea of it?


There's obviously a slider for sexual preference that is only a firm match with the genitals about 80% of the time, and reversed 10%. I assume that the others show about the same degree of variability on average, although some will be heavily selected out. Having a set of related ones all at one side would be like the rogue waves on the ocean, producing people like Newton or Trump. The brain can also re-wire itself around damage, so combined with variations in life experience, there's an awful lot of variety.
I find it useful to imagine groups of sliders affecting IQ, EQ, Greed, Fear, Altruism, Parental desire, Hoarding, Xenophobia, Musical Ability, Courage, Motor Control, Heat/Cold tolerance, Language ability, Gregariousness, Math ability, Secret keeping, Acting ability, Tolerance for confined spaces, Sensory acuity, Honesty, and others. Some of these are already overlapping definitions. Someone could probably draw a chart using every available adjective.



magz
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14 Mar 2018, 6:30 am

So you propose a map of traits for every human, not just ASD. Traits instead of disorders. Do I understand correctly?


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Dear_one
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14 Mar 2018, 6:38 am

magz wrote:
So you propose a map of traits for every human, not just ASD. Traits instead of disorders. Do I understand correctly?


Yes; I don't start off just mapping a trouble spot; I'd try to see how a larger pattern might sustain it. Overall, I'm more interested in sociology applications.