creating a website on Autism can you help?

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FE
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04 Oct 2021, 6:55 am

Hello!

I am a Digital content creator for the NHS.

I am currently working on a project to create a new website with information for Autistic people.

I was wondering if anyone would be interested in sharing their thoughts on the kinds of information they would like to see on the website, this could be;

- issues that Autistic people face
- things that they struggle with
- things that help you
- things you wish someone had told you
- services you use or wish where available

Anything you feel that may be relevant or you want to share.

As someone who falls in to the Neurotypical group (whatever that means!) I am keen to hear your experiences to try as best a possible to understand what it means to be on the Autistic spectrum.


Thank you for taking the time to read my post.

best wishes

Faaizah



Mountain Goat
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04 Oct 2021, 12:17 pm

I have not been assessed yet.


Hospitals are the most difficult enviroment for me.

Smells trigger partial shutdowns or shutdowns.

Corridors with no exits for seemingly miles cause partial shutdowns to turn into full on shutdowns.

Lack of understanding amongst staff due to assuming I have fainted cause shutdown recovery to be prolonged, and cause further repeating shutdowns.

I am unable to talk when I recover as I need to prevent myself from repeating the shutdown experience.

While recovering, if someone does talk, words can sound to me as if someone is speaking a foreign language as I recognize them as words I know but I am unable to work out what they mean, so I am often unable to communicate until I am fully recovered.

Full recovery needs me to be in a more favourable enviroment, and I need to just lie down without being pestered for around 15 to 30 minutes. I use so much energy up when I shut down that I need something sugary to drink or chocolatey to eat or I go shaky.

I am not sure if any of this helps?



Last edited by Mountain Goat on 04 Oct 2021, 2:17 pm, edited 1 time in total.

Fnord
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04 Oct 2021, 12:46 pm

FE wrote:
Creating a website on Autism can you help?
I sent you a PM, which you have read.

:? Not even a "Thank you"?



ezbzbfcg2
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04 Oct 2021, 12:59 pm

Well, since everyone is different, personal experiences will vary. What you need to look for is shared experiences many people here can relate to, but that the wider, general NT population would not.

Also, many websites about Autism focus on childhood behaviors. I think focusing on common life experiences of those with Autism would be more beneficial.

Common themes here appear to be: Being baffled by the behavior of others. Not understanding why so many people misunderstand us, and default to anger or indifference and exclusion. Why it seemed so easy for everyone else to make friends and form social bonds while we struggled. Why even friendly people we may get along with (co-worker, neighbor) never seem interested in really bonding or inviting us to the party. In addition to one-on-one intrapersonal problems, many of us seemed to be misunderstood by nearly everyone around us. These seem to be common themes.

And then the effects of being in this position: under-employment, unemployment, less relationships (friendship, romantic, professional) than the average NT. Not understanding why we're so out-of-step. Since most can't relate to us, they often can't offer any practical advice, as what works for them socially doesn't work in our case.

Executive function disorder also seems pretty big here.

I always found "repetitive behavior" to be vague and not well-defined term.



carlos55
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04 Oct 2021, 1:37 pm

Try to be fair & balanced in respect to different autistic peoples feelings towards treatment & cure, some are fine, others not since ASD is a spectrum of disability.

Some autistic people have a very hard time and are severely mentally disabled and thus dont get to give their opinions on here.

Simply pretending autism is one level of disability would be disingenuous to these people.

So dont fall into the trap of talking about autistic people or autism as one entity as seen on too many websites.

The following link will give you an idea of what im referring to:

https://www.ncsautism.org/blog//the-das ... entlyabled

Good Luck


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FE
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04 Oct 2021, 2:56 pm

Mountain Goat wrote:
I have not been assessed yet.


Hospitals are the most difficult enviroment for me.

Smells trigger partial shutdowns or shutdowns.

Corridors with no exits for seemingly miles cause partial shutdowns to turn into full on shutdowns.

Lack of understanding amongst staff due to assuming I have fainted cause shutdown recovery to be prolonged, and cause further repeating shutdowns.

I am unable to talk when I recover as I need to prevent myself from repeating the shutdown experience.

While recovering, if someone does talk, words can sound to me as if someone is speaking a foreign language as I recognize them as words I know but I am unable to work out what they mean, so I am often unable to communicate until I am fully recovered.

Full recovery needs me to be in a more favourable enviroment, and I need to just lie down without being pestered for around 15 to 30 minutes. I use so much energy up when I shut down that I need something sugary to drink or chocolatey to eat or I go shaky.

I am not sure if any of this helps?



Hello Mountain goat,

thank you for taking the time to respond to my post, I really appreciate it.

I would also like to thank you for sharing your experience with me. Reading about the experiences of Neurodiverse individuals is something that I feel will help me to better understand ASD/ASC, I have done lots of research and reading on the subject but its all very clinical and matter of fact. In order to fully appreciate the effects of Autism, I think speaking to people who live it is the best way forward, so thank you for helping me on this journey of understanding.

Best wishes and take care

Faaizah



Fnord
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04 Oct 2021, 3:04 pm

Mountain Goat
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04 Oct 2021, 3:23 pm

FE wrote:
Mountain Goat wrote:
I have not been assessed yet.


Hospitals are the most difficult enviroment for me.

Smells trigger partial shutdowns or shutdowns.

Corridors with no exits for seemingly miles cause partial shutdowns to turn into full on shutdowns.

Lack of understanding amongst staff due to assuming I have fainted cause shutdown recovery to be prolonged, and cause further repeating shutdowns.

I am unable to talk when I recover as I need to prevent myself from repeating the shutdown experience.

While recovering, if someone does talk, words can sound to me as if someone is speaking a foreign language as I recognize them as words I know but I am unable to work out what they mean, so I am often unable to communicate until I am fully recovered.

Full recovery needs me to be in a more favourable enviroment, and I need to just lie down without being pestered for around 15 to 30 minutes. I use so much energy up when I shut down that I need something sugary to drink or chocolatey to eat or I go shaky.

I am not sure if any of this helps?



Hello Mountain goat,

thank you for taking the time to respond to my post, I really appreciate it.

I would also like to thank you for sharing your experience with me. Reading about the experiences of Neurodiverse individuals is something that I feel will help me to better understand ASD/ASC, I have done lots of research and reading on the subject but its all very clinical and matter of fact. In order to fully appreciate the effects of Autism, I think speaking to people who live it is the best way forward, so thank you for helping me on this journey of understanding.

Best wishes and take care

Faaizah



I did write a lot more but I then shorten what I write so it is easier to read as I can go off on tangents...



FE
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04 Oct 2021, 3:24 pm

Fnord wrote:
FE wrote:
Creating a website on Autism can you help?
I sent you a PM, which you have read.

:? Not even a "Thank you"?


Thank you for your messages, very helpful and insightful!



FE
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04 Oct 2021, 3:34 pm

ezbzbfcg2 wrote:
Well, since everyone is different, personal experiences will vary. What you need to look for is shared experiences many people here can relate to, but that the wider, general NT population would not.

Also, many websites about Autism focus on childhood behaviors. I think focusing on common life experiences of those with Autism would be more beneficial.

Common themes here appear to be: Being baffled by the behavior of others. Not understanding why so many people misunderstand us, and default to anger or indifference and exclusion. Why it seemed so easy for everyone else to make friends and form social bonds while we struggled. Why even friendly people we may get along with (co-worker, neighbor) never seem interested in really bonding or inviting us to the party. In addition to one-on-one intrapersonal problems, many of us seemed to be misunderstood by nearly everyone around us. These seem to be common themes.

And then the effects of being in this position: under-employment, unemployment, less relationships (friendship, romantic, professional) than the average NT. Not understanding why we're so out-of-step. Since most can't relate to us, they often can't offer any practical advice, as what works for them socially doesn't work in our case.

Executive function disorder also seems pretty big here.

I always found "repetitive behavior" to be vague and not well-defined term.



Hello!

thank you for taking the time to respond to my post and for detailing topics you would like to see on ASD/ASC. Your list is very helpful, understating issues and hardships faced by ND individuals is a great step to getting the content for the website right. I have written all the topics down and will be sharing them with my colleagues if that is acceptable to you?

May I ask if you currently visit any websites to get information on issues related to ASD/ASC or if you have done in the past? If so what was your experience of the content?

Once again thank you for your input, im hoping we can create a website that really meets the needs of people with ASD/ASC

Best wishes and take care

Faaizah



FE
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04 Oct 2021, 3:42 pm

carlos55 wrote:
Try to be fair & balanced in respect to different autistic peoples feelings towards treatment & cure, some are fine, others not since ASD is a spectrum of disability.

Some autistic people have a very hard time and are severely mentally disabled and thus dont get to give their opinions on here.

Simply pretending autism is one level of disability would be disingenuous to these people.

So dont fall into the trap of talking about autistic people or autism as one entity as seen on too many websites.

The following link will give you an idea of what im referring to:

https://www.ncsautism.org/blog//the-das ... entlyabled

Good Luck


hello!

thank you for taking the time to respond to my post, your notes are very helpful. Im especially conscious of your final point, its actually something iv been struggling with, iv been told to write about certain subjects but to be honest with you I feel I am in danger of making blanket statements that do not apply to everyone with ASD/ASC given that the disorder is so very broad.

If is ok with you I would like to share your response with some colleagues who are also working on the project with me?

Once again thank you for your input, much appreciated.

Best wishes and take care

Faaizah



carlos55
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05 Oct 2021, 4:18 am

FE wrote:
carlos55 wrote:
Try to be fair & balanced in respect to different autistic peoples feelings towards treatment & cure, some are fine, others not since ASD is a spectrum of disability.

Some autistic people have a very hard time and are severely mentally disabled and thus dont get to give their opinions on here.

Simply pretending autism is one level of disability would be disingenuous to these people.

So dont fall into the trap of talking about autistic people or autism as one entity as seen on too many websites.

The following link will give you an idea of what im referring to:

https://www.ncsautism.org/blog//the-das ... entlyabled

Good Luck


I feel I am in danger of making blanket statements that do not apply to everyone with ASD/ASC given that the disorder is so very broad.

If is ok with you I would like to share your response with some colleagues who are also working on the project with me?

Faaizah


Yes of course


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Mona Pereth
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06 Oct 2021, 12:17 am

FE wrote:
Hello!

I am a Digital content creator for the NHS.

I am currently working on a project to create a new website with information for Autistic people.

I was wondering if anyone would be interested in sharing their thoughts on the kinds of information they would like to see on the website, this could be;

- issues that Autistic people face
- things that they struggle with
- things that help you
- things you wish someone had told you
- services you use or wish where available

Things desirable to include on your website if possible:

1) Information on how to get an adult autism evaluation. Perhaps a list of practitioners qualified to do adult autism evaluations? From what I've heard, people in the U.K. commonly have to ask their GP for a referral, and a lot of ill-informed GP's refuse to give that referral for various stupid reasons. So perhaps some advice on what to say to the GP to get one's request for a referral taken seriously?

2) Information for autistic people with various co-occurring mental health conditions, and a list of practitioners qualified to deal with the conjunction of autism and mental illness.

3) A list of autistic peer support organizations in the U.K., plus a list of online support resources such as this very forum. Given the shortage of professional support, many autistic adults have no support other than peer support -- which can also be valuable for those who do have professional support too.

Unfortunately I don't have handy a comprehensive list of autistic peer support organizations in the U.K., but here are a few I'm aware of:

- Autscape, an annual conference for autistic people in the U.K.
- Autistic U.K.
- Autistic Mutual Aid Society Edinburgh
- Neurodiverse self-advocacy (includes online forums)
- Autistic Inclusive Meets (mostly for families with autistic children, but autistic adults are involved in leading it apparently)
- AutAngel
- Autistic Pride - Reading
- National Autistic Task Force

There are also some others that promote themselves periodically both on Twitter and here on Wrong Planet, and you might find some more groups on Meetup.com.

4) A list of purely online support forums. See my list of message boards, Twitter hashtags, and Reddit communities.

5) For those of us who are capable of paid employment (which some autistic people are, though many are not) -- or for those of us who could be capable of paid employment if only more companies had a more autistic-friendly hiring process and had a more accommodating environment -- it would be desirable if your website could list services to help autistic people find jobs and also to help prospective employers accommodate autistic people.


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06 Oct 2021, 1:18 pm

FE wrote:
...with information for Autistic people.
1. Info that would help Autistics seeking employment. (Sorry, I'm not sure what that info would be but if such info was available I think some would welcome it.) Also, Maybe info about employers who seek Autistics or are at least Autistic-friendly. (A High-functioning Autistic would probably need different info than someone who is not High-functioning.)

2. On Wrong Planet it is common to "meet" people who have not yet been assessed for Autism and are unsure whether or not they have it. I gather that in the UK it could take a very long time to get a formal assessment to definitively resolve the doubt. Would you be including info for folk who think they might be Autistic? Perhaps info on what other conditions sometimes resemble Autism, and how to tell the difference. And maybe links to informal tests that might provide support for or against the suspicion. (E.g, Autism Spectrum Quotient Test (AQ) & Aspie Quiz.)


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FE
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06 Oct 2021, 3:15 pm

carlos55 wrote:
FE wrote:
carlos55 wrote:
Try to be fair & balanced in respect to different autistic peoples feelings towards treatment & cure, some are fine, others not since ASD is a spectrum of disability.

Some autistic people have a very hard time and are severely mentally disabled and thus dont get to give their opinions on here.

Simply pretending autism is one level of disability would be disingenuous to these people.

So dont fall into the trap of talking about autistic people or autism as one entity as seen on too many websites.

The following link will give you an idea of what im referring to:

https://www.ncsautism.org/blog//the-das ... entlyabled

Good Luck


I feel I am in danger of making blanket statements that do not apply to everyone with ASD/ASC given that the disorder is so very broad.

If is ok with you I would like to share your response with some colleagues who are also working on the project with me?

Faaizah


Yes of course



thank you for permission to share.

take care

Faaizah



FE
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06 Oct 2021, 3:23 pm

Mona Pereth wrote:
FE wrote:
Hello!

I am a Digital content creator for the NHS.

I am currently working on a project to create a new website with information for Autistic people.

I was wondering if anyone would be interested in sharing their thoughts on the kinds of information they would like to see on the website, this could be;

- issues that Autistic people face
- things that they struggle with
- things that help you
- things you wish someone had told you
- services you use or wish where available

Things desirable to include on your website if possible:

1) Information on how to get an adult autism evaluation. Perhaps a list of practitioners qualified to do adult autism evaluations? From what I've heard, people in the U.K. commonly have to ask their GP for a referral, and a lot of ill-informed GP's refuse to give that referral for various stupid reasons. So perhaps some advice on what to say to the GP to get one's request for a referral taken seriously?

2) Information for autistic people with various co-occurring mental health conditions, and a list of practitioners qualified to deal with the conjunction of autism and mental illness.

3) A list of autistic peer support organizations in the U.K., plus a list of online support resources such as this very forum. Given the shortage of professional support, many autistic adults have no support other than peer support -- which can also be valuable for those who do have professional support too.

Unfortunately I don't have handy a comprehensive list of autistic peer support organizations in the U.K., but here are a few I'm aware of:

- Autscape, an annual conference for autistic people in the U.K.
- Autistic U.K.
- Autistic Mutual Aid Society Edinburgh
- Neurodiverse self-advocacy (includes online forums)
- Autistic Inclusive Meets (mostly for families with autistic children, but autistic adults are involved in leading it apparently)
- AutAngel
- Autistic Pride - Reading
- National Autistic Task Force

There are also some others that promote themselves periodically both on Twitter and here on Wrong Planet, and you might find some more groups on Meetup.com.

4) A list of purely online support forums. See my list of message boards, Twitter hashtags, and Reddit communities.

5) For those of us who are capable of paid employment (which some autistic people are, though many are not) -- or for those of us who could be capable of paid employment if only more companies had a more autistic-friendly hiring process and had a more accommodating environment -- it would be desirable if your website could list services to help autistic people find jobs and also to help prospective employers accommodate autistic people.




Hello Mona Pereth,

thank you for taking the time to respond to my post.

I have to say reading these responses has got me thinking of so many different things I could write about, it is certainly clear that there is a great need for this information. So thank you for highlighting these issues, do I have permission to share your response with my colleagues?

Once again thank you for sharing your thoughts.

Best wishes

Faaizah