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ASPartOfMe
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18 Mar 2023, 9:36 am

Autistic people should be able to diagnose THEMSELVES in some cases because 'you don't need a doctor to tell you who are you', top expert says

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People who believe they are autistic should be able to 'self-identify' as such - in some cases without a doctor's diagnosis, according to a leading expert.

Recent documentaries by autistic BBC wildlife presenter Chris Packham, and openness from high-profile celebrities with autism, like billionaire Elon Musk and TV personality Melanie Sykes, have increased awareness of autism, with many people suspecting they have autistic traits like an intense interest in certain hobbies or repetitive routines.

As of March last year, there were more than 100,000 people with suspected autism waiting for diagnosis, up almost 40 per cent from the previous year, with many people turning to online questionnaires to try and work out themselves if they show signs of autism.

Now a leading expert, Professor Sue Fletcher-Watson, says people should not always have to wait for medical confirmation, but should be able to decide if they have autism themselves.

Speaking after a conference on neurodiversity, called ITAKOM (It Takes All Kinds Of Minds), Professor Fletcher-Watson, from the University of Edinburgh, told the Mail: 'People often self-identify as autistic, just as they self-identify their gender or ethnicity.

'This should be an option for people, as you shouldn't need a doctor to tell you who you are.

'People who just want to know if they are autistic so they can understand their own behaviours better, and make connections with other autistic people, don't necessarily need to jump through all the hoops of getting a diagnosis.

'Our NHS is under enormous pressure right now, so we should ask whether diagnosis is always needed, or whether self-identification could be enough for some people.'

Professor Fletcher-Watson said self-identification with autism may be quicker than getting a diagnosis through doctors, who can sometimes get it wrong anyway, due to outdated and narrow tests for the condition.

She said: 'Going to a doctor is normally associated with being ill - understandably that's not the nicest way to embark on life as an autistic person.'

'Neurodivergence', which means having an atypical mind, is a category used principally to describe conditions like autism, ADHD, dyslexia and Tourette's syndrome.

Autism has been identified later in life for television presenter Melanie Sykes and Christine McGuinness, the presenter and former partner of Paddy McGuinness.

Professor Fletcher-Watson said neurodivergent conditions can be missed, and only picked up in later life, because narrow definitions are used.

The expert, who gave a talk on neurodiversity at ITAKOM, in Edinburgh, on March 13, said: 'It can be unhelpful that people with autism in popular culture are stereotyped as being really intelligent or good with computers, with lots of autistic people ending up in Silicon Valley.

'That may mean people who don't feel 'clever', or aren't amazing at maths, don't feel they fit the mould of autism.

'There are also a lot of misconceptions, like that autistic people are not empathetic, when in fact they just show empathy differently.'

On autism sometimes being missed in women, the expert added: 'There are women out there with an intense interest in Harry Styles or high fashion, which are the 'restricted interests' used to help diagnose autism.

Taking a different view, Dr Andrew Stanfield, a psychiatrist and autism expert from the University of Edinburgh, said: 'Self-identification is entirely valid but there is often a need for formal diagnosis as well, as that can help people access support and organisations for autism, as well as being helpful when it comes to things like employment and benefits.

'There is always a risk of self-identification, as someone assuming they are autistic may in fact have a mental health issue which they could have help to deal with if they knew this was the case.

'Self-identification is getting much more common so we need to be aware of this.'

Tim Nicholls, Head of Influencing and Research at the National Autistic Society, said: 'Anyone who starts to think as an adult that they might be autistic will go through a period of identifying with what it means to be autistic.

'When they do, they need support and advice.

'Waits for clinically informed assessments to support an individual's understanding of their own differences and needs are unacceptably long all across the country.

This is a topic that in the past has been very divisive on Wrong Planet. This is a different place now. We do discuss controversial issues around autism civilly all the time. Due to the past I am not going to be reluctant to ask for moderator intervention. I don’t want that to happen. We should not let the past prevent us from discussing an important issue. Just don’t get personal, and don’t say or imply that as a group people that support or oppose self identification have negative traits.


In America insurance availability and cost for adult diagnosis are issues.

Often be it flu or COVID people self diagnose before going to a doctor.

Wrong Planet and most support groups do allow people that are not formally diagnosed.

Lack of an official diagnosis will make harder to be believed, but as we have discussed recently a formal diagnosis is no guarantee others will believe you.

No formal diagnosis means no accomidationis or benefits.

Because autism traits often are in other conditions chances of misdiagnosis are a very real consideration.




I do support this as a acceptable workaround when competent clinicians are not available. But if you go this route do very thorough research.. Don’t just look at the Wikipedia page or say I am autistic because this autistic person or fictional character is like me.

Also a consideration is it would be good to have a diagnoses in place before a crises and financial problems occur.


But if a diagnosis is not available it would be tragic to not move forward with your life due to imposter syndrome. Even if you are not autistic recognition of issues that are associated with autism and mitigation techniques probably will still be helpful.


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carlos55
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19 Mar 2023, 6:20 am

Most of us are able to identify which way we want, if people want to worship the ancient Roman gods and claim their one of the multiple genders along with autistic no one is going to stop them.

The problem is a diagnosis opens the way to help as I've said many times. Can anyone just go to a welfare office and claim their disabled with no medical proof and demand a carer, an apartment and £ / $ be paid to them each week without proof? no

The only way such a thing would work is if autism was not classed as a medical disorder anymore and like gender just something anyone can claim to be.

Then all the help would have to stop since there would then be a huge financial incentive to anyone poor or unemployed claiming to have an unproven, non biomarker, subjective and invisible disability for the extra money, since disability status gives a greater payout than unemployment status with none of the obligations attached.

The whole system would then crash under the weight of spurious applications and demands.

Those with severe disabilities or needs would simply go without, die or get abandoned.

Sadly these ND advocates just think of themselves and their short term personal ego needs than the wider issues


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ASPartOfMe
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19 Mar 2023, 12:41 pm

carlos55 wrote:
Most of us are able to identify which way we want, if people want to worship the ancient Roman gods and claim their one of the multiple genders along with autistic no one is going to stop them.

The problem is a diagnosis opens the way to help as I've said many times. Can anyone just go to a welfare office and claim their disabled with no medical proof and demand a carer, an apartment and £ / $ be paid to them each week without proof? no

The only way such a thing would work is if autism was not classed as a medical disorder anymore and like gender just something anyone can claim to be.

Then all the help would have to stop since there would then be a huge financial incentive to anyone poor or unemployed claiming to have an unproven, non biomarker, subjective and invisible disability for the extra money, since disability status gives a greater payout than unemployment status with none of the obligations attached.

The whole system would then crash under the weight of spurious applications and demands.

Those with severe disabilities or needs would simply go without, die or get abandoned.

Sadly these ND advocates just think of themselves and their short term personal ego needs than the wider issues

There are stereotypes of the self diagnosed as autism wannabes who want to be cool, or to excuse bad behavior or are probably not autistic or do not have real autism. I don’t see those sentiments very much here anymore but they used to be expressed constantly. I don’t know if prejudice has gone down or people are just more afraid to say what they feel. Outside of WP those stereotypes are still around.

The big issues for adults especially older ones as mentioned in the article are years long waits for assessment, lack of expertise in adult and female autism presentation and in America money. If these were not problems the issue of self diagnosis would be more binary, your choice, whatever bad consequences follow is on you.

Most people by the time they are middle aged do not not have the desire to be cool and hip, or have long been disabused of the idea that is possible for them.

If you are severely disabled you are likely to get some sort of label. I don’t see that changing. Even the experts quoted in the article said self diagnosis is not a good option for everybody. But having a label is far from a guarantee that you won’t be abandoned. The media especially in the UK are running many stories about this.


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19 Mar 2023, 1:12 pm

It is genuinely pretty difficult to get a diagnosis in Britain, and I'd imagine there are plenty of places where it is far harder.


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carlos55
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19 Mar 2023, 2:30 pm

PhosphorusDecree wrote:
It is genuinely pretty difficult to get a diagnosis in Britain, and I'd imagine there are plenty of places where it is far harder.


It takes along time unless you pay private.

As i said people can identify whatever they want, no one is going to stop them and no one else cares.

The problem is if he`s demanding self diagnosis as a replacement to official medical diagnosis, which opens the door to help, including financial.

So if its an official "self diagnosis" are unscrupulous parents in the UK going to claim their kid is autistic to claim an extra £3-400 / $500 a month disability welfare, if they have 4 why not all of them for $2000 a month, so they can get a big house, new car and a nice holiday for themselves and their NT children.

The risk of abusing the system is massive and knowing how Scrooge the government is, which is why it could never realistically happen.

The only way would be de-pathologizing autism which would lead to the financial help being taken away for all.

All Autistic people would then have to cope with daily life on the same way as NT people, which many cant obviously do.

Just another example of ND advocate more interested in de-pathologizing autism because he cant bear to acknowledge he`s associated with a medical disorder so willing to bring everyone down and suffer, to suit his personal ego.


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19 Mar 2023, 3:03 pm

carlos55 wrote:
PhosphorusDecree wrote:
It is genuinely pretty difficult to get a diagnosis in Britain, and I'd imagine there are plenty of places where it is far harder.


It takes along time unless you pay private.

As i said people can identify whatever they want, no one is going to stop them and no one else cares.

The problem is if he`s demanding self diagnosis as a replacement to official medical diagnosis, which opens the door to help, including financial.

So if its an official "self diagnosis" are unscrupulous parents in the UK going to claim their kid is autistic to claim an extra £3-400 / $500 a month disability welfare, if they have 4 why not all of them for $2000 a month, so they can get a big house, new car and a nice holiday for themselves and their NT children.

The risk of abusing the system is massive and knowing how Scrooge the government is, which is why it could never realistically happen.

The only way would be de-pathologizing autism which would lead to the financial help being taken away for all.

All Autistic people would then have to cope with daily life on the same way as NT people, which many cant obviously do.

Just another example of ND advocate more interested in de-pathologizing autism because he cant bear to acknowledge he`s associated with a medical disorder so willing to bring everyone down and suffer, to suit his personal ego.

Who is demanding self diagnosed autism go into the DSM or be treated by doctors and the government like autistics that are medically diagnosed? The experts in the article are saying in wake of the difficulty in obtaining a diagnosis self diagnosis is a legitimate option.

I am sure it is the same in the U.K. but you can not government benefits without documented proof you qualify. You can’t win a discrimination case saying this business did not provide accommodations for your autism unless you prove you are autistic. If a clinician produces proof then you are not self diagnosed.


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20 Mar 2023, 8:18 am

ASPartOfMe wrote:
carlos55 wrote:
PhosphorusDecree wrote:
It is genuinely pretty difficult to get a diagnosis in Britain, and I'd imagine there are plenty of places where it is far harder.


It takes along time unless you pay private.

As i said people can identify whatever they want, no one is going to stop them and no one else cares.

The problem is if he`s demanding self diagnosis as a replacement to official medical diagnosis, which opens the door to help, including financial.

So if its an official "self diagnosis" are unscrupulous parents in the UK going to claim their kid is autistic to claim an extra £3-400 / $500 a month disability welfare, if they have 4 why not all of them for $2000 a month, so they can get a big house, new car and a nice holiday for themselves and their NT children.

The risk of abusing the system is massive and knowing how Scrooge the government is, which is why it could never realistically happen.

The only way would be de-pathologizing autism which would lead to the financial help being taken away for all.

All Autistic people would then have to cope with daily life on the same way as NT people, which many cant obviously do.

Just another example of ND advocate more interested in de-pathologizing autism because he cant bear to acknowledge he`s associated with a medical disorder so willing to bring everyone down and suffer, to suit his personal ego.

Who is demanding self diagnosed autism go into the DSM or be treated by doctors and the government like autistics that are medically diagnosed? The experts in the article are saying in wake of the difficulty in obtaining a diagnosis self diagnosis is a legitimate option.

I am sure it is the same in the U.K. but you can not government benefits without documented proof you qualify. You can’t win a discrimination case saying this business did not provide accommodations for your autism unless you prove you are autistic. If a clinician produces proof then you are not self diagnosed.


I did say people can identify how they wish and no one will care.

Except of course those that do so while claiming to speak for other autistic people.

What’s the point of self diagnosis anyway without any help? just to go on WP and other autism sites talking about autism when you may have something else all along what’s the point in that?

I don’t think that was only what he was referring to though, I believe he meant self diagnosis to get help.

If he did such things takes away from the diagnosed.

There’s only finite resources and a queue for them. If they are swamped by many undiagnosed people they’ll have to wait longer themselves

The answer is to allocate more resources to diagnose autism. More research to find bio markers too then this problem wouldn’t occur.

What non financial help is there anyway?

From personal experience you get diagnosed then dumped maybe I could claim benefits or a blue disabled badge if I wanted to.

Some useless psychiatric councelling services to chat to a NT

What is this mountain of help anyway they keep referring to outside welfare?


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ASPartOfMe
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20 Mar 2023, 12:47 pm

carlos55 wrote:
ASPartOfMe wrote:
carlos55 wrote:
PhosphorusDecree wrote:
It is genuinely pretty difficult to get a diagnosis in Britain, and I'd imagine there are plenty of places where it is far harder.


It takes along time unless you pay private.

As i said people can identify whatever they want, no one is going to stop them and no one else cares.

The problem is if he`s demanding self diagnosis as a replacement to official medical diagnosis, which opens the door to help, including financial.

So if its an official "self diagnosis" are unscrupulous parents in the UK going to claim their kid is autistic to claim an extra £3-400 / $500 a month disability welfare, if they have 4 why not all of them for $2000 a month, so they can get a big house, new car and a nice holiday for themselves and their NT children.

The risk of abusing the system is massive and knowing how Scrooge the government is, which is why it could never realistically happen.

The only way would be de-pathologizing autism which would lead to the financial help being taken away for all.

All Autistic people would then have to cope with daily life on the same way as NT people, which many cant obviously do.

Just another example of ND advocate more interested in de-pathologizing autism because he cant bear to acknowledge he`s associated with a medical disorder so willing to bring everyone down and suffer, to suit his personal ego.

Who is demanding self diagnosed autism go into the DSM or be treated by doctors and the government like autistics that are medically diagnosed? The experts in the article are saying in wake of the difficulty in obtaining a diagnosis self diagnosis is a legitimate option.

I am sure it is the same in the U.K. but you can not government benefits without documented proof you qualify. You can’t win a discrimination case saying this business did not provide accommodations for your autism unless you prove you are autistic. If a clinician produces proof then you are not self diagnosed.


I did say people can identify how they wish and no one will care.

Except of course those that do so while claiming to speak for other autistic people.

What’s the point of self diagnosis anyway without any help? just to go on WP and other autism sites talking about autism when you may have something else all along what’s the point in that?

I don’t think that was only what he was referring to though, I believe he meant self diagnosis to get help.

If he did such things takes away from the diagnosed.

There’s only finite resources and a queue for them. If they are swamped by many undiagnosed people they’ll have to wait longer themselves

The answer is to allocate more resources to diagnose autism. More research to find bio markers too then this problem wouldn’t occur.

What non financial help is there anyway?

From personal experience you get diagnosed then dumped maybe I could claim benefits or a blue disabled badge if I wanted to.

Some useless psychiatric councelling services to chat to a NT

What is this mountain of help anyway they keep referring to outside welfare?

There is not enough help for adults. Clinicians need to be trained in how autism presents in adults and women. But if you are struggling and competent diagnosis is not available while self diagnosis is not optimal it is often better than nothing.

What it can do is better identify what your problems are even if the autistic type symptoms are not caused by autism.


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20 Mar 2023, 7:14 pm

carlos55 wrote:
ASPartOfMe wrote:
carlos55 wrote:
PhosphorusDecree wrote:
It is genuinely pretty difficult to get a diagnosis in Britain, and I'd imagine there are plenty of places where it is far harder.


It takes along time unless you pay private.

As i said people can identify whatever they want, no one is going to stop them and no one else cares.

The problem is if he`s demanding self diagnosis as a replacement to official medical diagnosis, which opens the door to help, including financial.

So if its an official "self diagnosis" are unscrupulous parents in the UK going to claim their kid is autistic to claim an extra £3-400 / $500 a month disability welfare, if they have 4 why not all of them for $2000 a month, so they can get a big house, new car and a nice holiday for themselves and their NT children.

The risk of abusing the system is massive and knowing how Scrooge the government is, which is why it could never realistically happen.

The only way would be de-pathologizing autism which would lead to the financial help being taken away for all.

All Autistic people would then have to cope with daily life on the same way as NT people, which many cant obviously do.

Just another example of ND advocate more interested in de-pathologizing autism because he cant bear to acknowledge he`s associated with a medical disorder so willing to bring everyone down and suffer, to suit his personal ego.

Who is demanding self diagnosed autism go into the DSM or be treated by doctors and the government like autistics that are medically diagnosed? The experts in the article are saying in wake of the difficulty in obtaining a diagnosis self diagnosis is a legitimate option.

I am sure it is the same in the U.K. but you can not government benefits without documented proof you qualify. You can’t win a discrimination case saying this business did not provide accommodations for your autism unless you prove you are autistic. If a clinician produces proof then you are not self diagnosed.


I did say people can identify how they wish and no one will care.

Except of course those that do so while claiming to speak for other autistic people.

What’s the point of self diagnosis anyway without any help? just to go on WP and other autism sites talking about autism when you may have something else all along what’s the point in that?

I don’t think that was only what he was referring to though, I believe he meant self diagnosis to get help.

If he did such things takes away from the diagnosed.

There’s only finite resources and a queue for them. If they are swamped by many undiagnosed people they’ll have to wait longer themselves

The answer is to allocate more resources to diagnose autism. More research to find bio markers too then this problem wouldn’t occur.

What non financial help is there anyway?

From personal experience you get diagnosed then dumped maybe I could claim benefits or a blue disabled badge if I wanted to.

Some useless psychiatric councelling services to chat to a NT

What is this mountain of help anyway they keep referring to outside welfare?


I think you have misread the article.

It clearly states that for some people, self-diagnosis is appropriate because it leads to a better understanding of oneself. If one does not need assistance or accommodations, and because the wait and expense of a diagnosis is extreme, then self diagnosis is a rational choice.

If someone wants government assistance or accommodations, then an official diagnosis is still required.


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21 Mar 2023, 4:03 pm

blazingstar wrote:
carlos55 wrote:
ASPartOfMe wrote:
carlos55 wrote:
PhosphorusDecree wrote:
It is genuinely pretty difficult to get a diagnosis in Britain, and I'd imagine there are plenty of places where it is far harder.


It takes along time unless you pay private.

As i said people can identify whatever they want, no one is going to stop them and no one else cares.

The problem is if he`s demanding self diagnosis as a replacement to official medical diagnosis, which opens the door to help, including financial.

So if its an official "self diagnosis" are unscrupulous parents in the UK going to claim their kid is autistic to claim an extra £3-400 / $500 a month disability welfare, if they have 4 why not all of them for $2000 a month, so they can get a big house, new car and a nice holiday for themselves and their NT children.

The risk of abusing the system is massive and knowing how Scrooge the government is, which is why it could never realistically happen.

The only way would be de-pathologizing autism which would lead to the financial help being taken away for all.

All Autistic people would then have to cope with daily life on the same way as NT people, which many cant obviously do.

Just another example of ND advocate more interested in de-pathologizing autism because he cant bear to acknowledge he`s associated with a medical disorder so willing to bring everyone down and suffer, to suit his personal ego.

Who is demanding self diagnosed autism go into the DSM or be treated by doctors and the government like autistics that are medically diagnosed? The experts in the article are saying in wake of the difficulty in obtaining a diagnosis self diagnosis is a legitimate option.

I am sure it is the same in the U.K. but you can not government benefits without documented proof you qualify. You can’t win a discrimination case saying this business did not provide accommodations for your autism unless you prove you are autistic. If a clinician produces proof then you are not self diagnosed.


I did say people can identify how they wish and no one will care.

Except of course those that do so while claiming to speak for other autistic people.

What’s the point of self diagnosis anyway without any help? just to go on WP and other autism sites talking about autism when you may have something else all along what’s the point in that?

I don’t think that was only what he was referring to though, I believe he meant self diagnosis to get help.

If he did such things takes away from the diagnosed.

There’s only finite resources and a queue for them. If they are swamped by many undiagnosed people they’ll have to wait longer themselves

The answer is to allocate more resources to diagnose autism. More research to find bio markers too then this problem wouldn’t occur.

What non financial help is there anyway?

From personal experience you get diagnosed then dumped maybe I could claim benefits or a blue disabled badge if I wanted to.

Some useless psychiatric councelling services to chat to a NT

What is this mountain of help anyway they keep referring to outside welfare?


I think you have misread the article.

It clearly states that for some people, self-diagnosis is appropriate because it leads to a better understanding of oneself. If one does not need assistance or accommodations, and because the wait and expense of a diagnosis is extreme, then self diagnosis is a rational choice.

If someone wants government assistance or accommodations, then an official diagnosis is still required.


Thank you.

I was worried we had become stuck with a lack of a complete understanding.