Autism the thread

[Skyscraper]

Just sorted my new Ride Access Pass, and as expected because I have the label of having a "cognitive" disability they've automatically assigned me the red type even though I'm perfectly capable of riding alone. 😡
I'll just have to lump it as there's nothing I can do but I ain't happy lol.

 

[Jonathan]

I'm still surprised I haven't had my next COVID booster, given I'm also in group 6 on account of being autistic.

In an update to this, I've just received a text inviting me to book my booster. Are NHS UK watching the forum or something?

 

[pluk]

I was only going to ask; what would you guys’ thoughts be on this? Would you find it thoughtful albeit unneeded like me, or would you find it insulting like my mum?

Absolutely standard across public bodies, and absolutely right that communications are sent out like this.

At my work if you find yourself arrested and present as being vulnerable, which would include all under 18s and anyone stating they had any mental health issue regardless of severity, is provided with an easy read rights and entitlements. I'm not a Dr, I don't know what issues any given diagnosis would cause an individual, and many MH incidences cover a huge spectrums of severity, often to make the diagnosis itself practically meaningless to a third party. A computer sending out a letter can make even less of an assessment.

I think someone would have to be trying pretty hard to be insulted to be insulted by this.

 

[Matt N]

Absolutely standard across public bodies, and absolutely right that communications are sent out like this.

At my work if you find yourself arrested and present as being vulnerable, which would include all under 18s and anyone stating they had any mental health issue regardless of severity, is provided with an easy read rights and entitlements. I'm not a Dr, I don't know what issues any given diagnosis would cause an individual, and many MH incidences cover a huge spectrums of severity, often to make the diagnosis itself practically meaningless to a third party. A computer sending out a letter can make even less of an assessment.

I think someone would have to be trying pretty hard to be insulted to be insulted by this.

As I say, I didn’t personally find it insulting, and I do understand why they do it. I was just intrigued to know if other people on here felt the same way.

 

[pluk]

As I say, I didn’t personally find it insulting, and I do understand why they do it. I was just intrigued to know if other people on here felt the same way.

I know, which I why I wrote 'a person...', rather than 'you...', possibly a good example of how different people can read the same things very differently!

 

[Matt N]

I know, which I why I wrote 'a person...', rather than 'you...', possibly a good example of how different people can read the same things very differently!

Ah, sorry… I must have misinterpreted that!

 

[NuttySquirrel]

Absolutely standard across public bodies, and absolutely right that communications are sent out like this.

At my work if you find yourself arrested and present as being vulnerable, which would include all under 18s and anyone stating they had any mental health issue regardless of severity, is provided with an easy read rights and entitlements. I'm not a Dr, I don't know what issues any given diagnosis would cause an individual, and many MH incidences cover a huge spectrums of severity, often to make the diagnosis itself practically meaningless to a third party. A computer sending out a letter can make even less of an assessment.

I think someone would have to be trying pretty hard to be insulted to be insulted by this.

I have to disagree here.

Equality is not about giving everyone the same treatment - it's about understanding exactly how an individual may be disadvantaged and providing them with appropriate tools so that they are no longer disadvantaged. Would you still give an Easy Read document to someone who was registered blind? No, you'd give them a document written in braille. Or better still, ask them in what format they'd like to receive the information.

I'm sure Easy Read documents are extremely helpful for a large number of people, but you cannot make assumptions about the nature of people's disabilities and what support they require. If a computer isn't capable of making that judgement then it shouldn't be a computer making those decisions in the first place.

 

[pluk]

I have to disagree here.

Equality is not about giving everyone the same treatment - it's about understanding exactly how an individual may be disadvantaged and providing them with appropriate tools so that they are no longer disadvantaged. Would you still give an Easy Read document to someone who was registered blind? No, you'd give them a document written in braille. Or better still, ask them in what format they'd like to receive the information.

I'm sure Easy Read documents are extremely helpful for a large number of people, but you cannot make assumptions about the nature of people's disabilities and what support they require. If a computer isn't capable of making that judgement then it shouldn't be a computer making those decisions in the first place.

There are +60m people in the UK, each with an individual set of abilities and needs down to the minutest detail. It is not feasible to hold a database with that level of detail, nor would it be legal under GDPR data rules covering the proportionality of data retention.

Easy Read is therefore something of a catch all by necessity. Large print, pictures to follow, small text blocks. All things that will help people overcome communication issues. It's not a computer making a 'decision', doctors have done that by providing a diagnosis of the conditions that can limit understanding of standard communication.

And that's not to say that is the end of adjustment or support at all. Of course there are braille options for the registered blind (a very different diagnosis to what was cbbeing discussed), foreign language options etc etc. And on top of that you have those requiring carers who will also recieve a copy to ensure understanding, in custody setting an 'appropriate adult' is provided. In effect, those that need it do get a personal needs based delivery from their carer. Again, all based on medical diagnosis and advise.

And the Easy Read does not disadvantage the recipient in any way, it contains all the same relevant information, just presented in a different way. Why not send everyone that then? It takes an extra 8 or so sheets of paper, multilpy that by 40m and its a huge financial and environmental cost.

 

[Shaggy_Dog_]

I have to disagree here.

Equality is not about giving everyone the same treatment - it's about understanding exactly how an individual may be disadvantaged and providing them with appropriate tools so that they are no longer disadvantaged. Would you still give an Easy Read document to someone who was registered blind? No, you'd give them a document written in braille. Or better still, ask them in what format they'd like to receive the information.

I'm sure Easy Read documents are extremely helpful for a large number of people, but you cannot make assumptions about the nature of people's disabilities and what support they require. If a computer isn't capable of making that judgement then it shouldn't be a computer making those decisions in the first place.

Could a point not be made that equality can also be making sure that everybody is able to access the same information (and/or facilities) regardless of their own particular circumstances?

The letter that some people here received was in an easy read format. Were they able to read it and get the information they needed in a clear way? Yes, they were. I can definitely see how they may have felt a little patronised by it, it must be a little bit galling to think that someone has thought that you specifically needed to be sent a letter written like this. But the intention was to ensure that everyone got the information they needed and were able to comprehend. So just as some people out there would have received letters giving this same information in braille, Swahili, or whatever it just so happened that you got your one in the easy read format even though a standard letter would also have been ok. I wouldn’t read too much in to it Matt, it was nothing personal, just that you happened to be included in the very large and wide neurodiverse category and, for want of a better phrase, they are catering to the lowest common denominator as it were to ensure that everyone in the category would be able to comprehend the information. Better that some people got the information in a format they didn’t need rather than some others getting the information in a format that they have problems understanding.

Just see it in the same was as for example a teacher explaining something very simply for the whole class due to some pupils there needing extra clarification in a way that the others don’t necessarily need.

 

[James]

I've taken care of people with autism, it's a wide spectrum and can be different for each individual. Some people with autism can read, write and communicate just fine, while others struggle and need lots of support in order to understand information.

It's hard to individualise for every single person when dealing with something high volume such as covid vaccination letters, given the volume of people registered with the NHS, so easy read is a standardised way to ensure all persons within certain categories can easily understand information.

You should be able to contact your local health board or GP practice to inform them of your preferences for receiving correspondence, it's worth contacting them if you feel you require a format that is more appropriate.

 

[imanautie]

Just sorted my new Ride Access Pass, and as expected because I have the label of having a "cognitive" disability they've automatically assigned me the red type even though I'm perfectly capable of riding alone. 😡
I'll just have to lump it as there's nothing I can do but I ain't happy lol.

Have a chat with them when you collect.

 

[Nick🎢]

We are going to do ours shortly, I'll report back on how it goes. I suspect in this evidence based approach we will come back being more dependent than we currently self identify as based on reports etc so may hit similar things.

 

[imanautie]

We are going to do ours shortly, I'll report back on how it goes. I suspect in this evidence based approach we will come back being more dependent than we currently self identify as based on reports etc so may hit similar things.

Nimbus don't decide what color, merlin still do that based on which of the 4 boxes you tick when linking your access card/card to rap.
Edit to add: in other words the only change nimbus makes is who decides yes or no, deciding which color works exactly as it has since yellow was introduced

 

[zeock]

I'm autistic (and dyspraxic), and I just don't understand why someone would advocate snake oil salesman 'cures' such as Stan Kurtz. Even if there was a cure available, I wouldn't want it. This is something that Stan Kurtz is involved in. https://en.wikipedia.org/wiki/Generation_Rescue

 

[Jonathan]

I'm autistic (and dyspraxic), and I just don't understand why someone would advocate snake oil salesman 'cures' such as Stan Kurtz. Even if there was a cure available, I wouldn't want it. This is something that Stan Kurtz is involved in. https://en.wikipedia.org/wiki/Generation_Rescue

They praise Andrew Wakefield. That's enough for me to know they're not an organisation worth wasting time on.

 

[Nick🎢]

These groups take base findings or correlations and grow them to fit their worldview/agenda.

The ideas are not entirely baseless, even if they are making quite a jump from the reality of what is understood.

There is a correlation (which of cause does not mean causation) between ASD and CFS/ME and environmental factors and vaccines do factor (though not as may be suggested by some). The research is pretty immature currently but the evidence suggests more of a genetic susceptibility to environmental toxins than those things causing the condition. There is certainly some evidence that symptoms are heightened when an individual is lacking in certain nutrients and/or has high levels of given toxins such as heavy metals. One of the toxins that pops up a lot is mercury and this was used in vaccines historically, though not for some time. This is where the conjectural link has been created by some. The only thing that is really understood about vaccines is that like naturally caught viruses can lead to a state where the body has a long-term low to medium-level immune response active. There is some thought that the associated inflammation that accompanies this leads to poor nutrient uptake which heightens symptoms. Two key points though - this is all theory and evidence, not proven fact. Equally all theories are around things that pronounce symptoms, not cause them!

A key thing in this is the use of the word correlated. All that is really understood is that people who sit in one group are more likely to also be in another group compared to the average population. Why that is, certainly isn't understood is the why and the root cause.

 

[Matt N]

Even if a correlation does technically exist between autism and certain other things, it should be noted that as @Nick🎢 has said in his post above, correlation does not equal causation.

These folks may not technically be wrong when they say that autism is correlated with, say, taking vaccines. However, correlation alone can never tell the whole story; there are all kinds of things that, while technically correlated, have no real-world relationship at all. With that in mind, I’d say that the chances of autism and taking vaccines having a genuine relationship is slim.

Just take a look at some of these links to see examples of weird correlations in action:

Spurious correlations

www.tylervigen.com

The 10 Most Bizarre Correlations

<b>One of the first things you learn in any statistics class is that <a href="http://en.wikipedia.org/wiki/Correlation_does_not_imply_causation" target="_blank">correlation</a> doesn't imply causation.</b> Nonetheless, it's fun to consider the causal relationships one could infer from these...

www.buzzfeednews.com

(Coincidentally, the BuzzFeed article shows that autism and eating organic food technically have a correlation coefficient of close to 1, which is as much of a positive correlation as you can get. Are they likely to have any real life relationship, though? Not overly likely at all, in my view.)

Besides, I thought ASD diagnosis was largely genetic?

 

[Nick🎢]

From anecdotal personal experience and from my Wife who is heavily involved in the community - I wouldn't write off a clean diet as not having a positive impact. How it relates to ASD though is a different question. What is absolutely true is people (all) get gut, brain and other inflammation from our modern, western food supply. There are side impacts of this such as increased anxiety etc which can be magnified in the case of somebody with ASD who already likely suffers with these type of challenges.

edit Ah I miss read that! they are saying the other way around.

Ive not read through the link yet - but one I always liked with correlation was that living near power lines gives you cancer. That was the correlation however in reality the causation is that houses near powerlines are cheaper, poor people live in cheaper houses and poorer people have poorer, more processed diets... and THEY increase the risk for cancer.

And yep - it's totally genetic! I think all of the things like food and nutrition alter how much somebody presents rather than if they are or are not on the spectrum.

 

[Jonathan]

Went to Tesco earlier to grab a few bits of shopping (needed something for dinner tonight, plus a few more bits of Christmas shopping). I now remember why I hate going to supermarkets on Sundays. It was so insanely busy. Thank goodness I'd made the decision to have my noise-cancelling headphones with me and stick some music on - made the whole experience more bearable.

Also, shoutout to the security guard in the spirits aisle who stared at me for ages to the point where I felt so uncomfortable that I had to leave the aisle without being able to browse to the extent that I would've liked.

 

[BarryZola]

Think that's a new-ish thing. Noticed the security guard at our's standing guard at the bottom of the aisle the other day. Must be a xmas thing with all the people down there in this period. Or maybe you just looked like a right old thief 😆👍