Autism activism

[CarmenGhia]

I know we have a more general autism discussion thread, but the topic of autism activism and its overlaps with other issues has come up on other threads.

I am an autistic woman and dipped my toes into the world of online autism advocacy, mainly on Instagram and to begin with, Twitter. What started with people sharing their experiences and comparing notes quickly turned into a political movement, with its own sets of diktats.

Many of these advocates and influencers are young and female, although many identify as something else. A familiar theme is "not all autistic people are boys with no social skills who are obsessed with trains". This is true, but increasingly, they swap one set of stereotypes for another. Trains, maths and social awkwardness have been replaced by gender identity, brightly-coloured clothes, manic and childlike behaviour, and entitlement.

Then there are those who claim to be speaking on behalf of autistic people with higher support needs, who are either parents of teens or children, or those with an even bigger agenda who get very angry when anyone tries to put a positive spin on any of their autistic experiences.

It's a toxic cesspit and I'm not sure who it is trying to help. Anyone else got experience?

 

[Kim Mild]

A lot of the female social media neurodivergents ( as some claim they have adhd) are stereotypes. They often proclaim themselves to be queen, and have endometriosis.
At some point , people have made a conscious decision to fit in. I'm not sure if it's masking as such , it's more proving they have certain traits .

 

[Droosie123]

Drives me mad (and I speak as an autistic woman). I’ve seen jubilation that they are autistic and have the diagnosis. Yes great, it’s been recognised but the difficulties we face are hardly something to break out the party string over. Some things are a full on pain in the arse.
And as for the policing around language don’t get me started,

I’m autistic which seems to be the preferred identity speak.
My son says “I have autism too Mum”.
Neither of us are wrong. His body, his brain, his choice.
God help anyone who corrected him in my hearing.

Then all the “it’s just a difference” stuff.
My friend has two adult children who are non verbal and autistic, she still has to take them to the toilet. They will need help all their lives. That’s not just a difference, it’s a major disability but god forbid a parent who says this. They’d be called all kinds by some activists.

 

[Melian]

I dislike the whole "superpower" stuff. I don't know about anyone else but I got a diagnosis because I was struggling and had been for years.

 

[CarmenGhia]

Drives me mad (and I speak as an autistic woman). I’ve seen jubilation that they are autistic and have the diagnosis. Yes great, it’s been recognised but the difficulties we face are hardly something to break out the party string over. Some things are a full on pain in the arse.
And as for the policing around language don’t get me started,

I’m autistic which seems to be the preferred identity speak.
My son says “I have autism too Mum”.
Neither of us are wrong. His body, his brain, his choice.
God help anyone who corrected him in my hearing.

Then all the “it’s just a difference” stuff.
My friend has two adult children who are non verbal and autistic, she still has to take them to the toilet. They will need help all their lives. That’s not just a difference, it’s a major disability but god forbid a parent who says this. They’d be called all kinds by some activists.

The congratulating one another on getting a diagnosis is creepy. You don't go round congratulating someone who has been found to have a lifelong, potentially debilitating condition.

There's a lot of talk about "unmasking" at the moment, which has led to a race to the bottom of who has given up doing the most, and who has the most skill regression, and who is the most socially inept and basically annoying. This is in contrast to the physically disabled people I know, who all want to do as much as they can in spite of their limitations. A lot of autistic people are like that too, and have jobs and commitments which do cause them stress, but also satisfaction.

 

[Sea]

Have family and friends with autism. Language does change over time, but we hate neurodivergent tag, but some asd prefer that label and some don't.
Loathe autism and super powers, most patronising fake celebration of a disability.
Also terrified of autism being honed into by certain groups for nefarious purposes

 

[Merpedy]

The congratulating one another on getting a diagnosis is creepy. You don't go round congratulating someone who has been found to have a lifelong, potentially debilitating condition.

I think getting a diagnosis can be very important to getting support or general recognition for what you have been dealing with though, so I can see it from that POV

However, I think the most confusing thing I've come across (in the context of people "faking" autism) is parents who have discussed the difficulty in having their young kids diagnosed and the wait times and then saying "you know this made me realise I am also autistic and I'm now also getting a diagnosis". I mean, if you have gone through the majority of your life without significant struggle (because if you were struggling significantly then I don't think this would be something you'd only seek a diagnosis for now), do you really need that diagnosis? Especially when you can see that the system to get a diagnosis is under strain already and those resources could be better used for other people?

 

[Melian]

I think getting a diagnosis can be very important to getting support or general recognition for what you have been dealing with though, so I can see it from that POV

However, I think the most confusing thing I've come across (in the context of people "faking" autism) is parents who have discussed the difficulty in having their young kids diagnosed and the wait times and then saying "you know this made me realise I am also autistic and I'm now also getting a diagnosis". I mean, if you have gone through the majority of your life without significant struggle (because if you were struggling significantly then I don't think this would be something you'd only seek a diagnosis for now), do you really need that diagnosis? Especially when you can see that the system to get a diagnosis is under strain already and those resources could be better used for other people?

I'm guessing you're not Autistic and have been lucky enough not to have spent your life wondering why you're different? And many women including myself have been misdiagnosed with mental health conditions.

 

[whyhellothere83]

I mean, if you have gone through the majority of your life without significant struggle (because if you were struggling significantly then I don't think this would be something you'd only seek a diagnosis for now), do you really need that diagnosis? Especially when you can see that the system to get a diagnosis is under strain already and those resources could be better used for other people?

This is a disgusting view and ableist. So you’re saying it’s pointless being late diagnosed? The majority of people I know who are late diagnosed are because they finally unmasked during lockdown. You need to change your horrible mindset.

 

[Kim Mild]

I think getting a diagnosis can be very important to getting support or general recognition for what you have been dealing with though, so I can see it from that POV

However, I think the most confusing thing I've come across (in the context of people "faking" autism) is parents who have discussed the difficulty in having their young kids diagnosed and the wait times and then saying "you know this made me realise I am also autistic and I'm now also getting a diagnosis". I mean, if you have gone through the majority of your life without significant struggle (because if you were struggling significantly then I don't think this would be something you'd only seek a diagnosis for now), do you really need that diagnosis? Especially when you can see that the system to get a diagnosis is under strain already and those resources could be better used for other people?

A lot of women who come to suspect they are autistic in adulthood, particularly those with autistic children have struggled throughout their lives. They have looked to other physical and mental health conditions to explain phenomena that can also be attributed to autism.

Whether or not these adults need a diagnosis is open to debate. In a lot of cases, it confirms what people already know.
I'm not sure it's beneficial in the greater scheme of things , unless a diagnosis leads to more support being provided. .
In terms of some people being more worthy of a diagnosis than others , I disagree. Medical knowledge only advances by studying real patients. That is precisely why so many autistic females have slipped under the radar .

 

[Merpedy]

In terms of some people being more worthy of a diagnosis than others , I disagree.

Not really saying this

It’s more that they recognise that the system to get the diagnosis is currently under-resourced hence all the delays and waiting lists. As you say, unless the diagnosis is essential for some sort of support that you don’t already get, to me it just feels like contributing to the under resourced problem and causing delays to increase

For context, that particular example came from people complaining that those “faking” autism were contributing to the delays and it struck me that many of them were also essentially saying that they were contributing to the delays to get a diagnosis that wouldn’t necessarily result in them getting beneficial support for them

I understand that there is a personal benefit in having a diagnosis and feeling like you’ve been able to “find out” why you feel a certain way and do certain things, but at the same time I recognise that the resources to get a diagnosis for those reasons could be better used for other individuals that may require it to get more support

 

[Kim Mild]

Not really saying this

It’s more that they recognise that the system to get the diagnosis is currently under-resourced hence all the delays and waiting lists. As you say, unless the diagnosis is essential for some sort of support that you don’t already get, to me it just feels like contributing to the under resourced problem and causing delays to increase

For context, that particular example came from people complaining that those “faking” autism were contributing to the delays and it struck me that many of them were also essentially saying that they were contributing to the delays to get a diagnosis that wouldn’t necessarily result in them getting beneficial support for them

I understand that there is a personal benefit in having a diagnosis and feeling like you’ve been able to “find out” why you feel a certain way and do certain things, but at the same time I recognise that the resources to get a diagnosis for those reasons could be better used for other individuals that may require it to get more support

People seeking diagnosis / treatment from an under resourced system applies to all of the NHS.

I'm not aware of people actually having NHS assessments who are 'faking ' autism, although there probably are some Perhaps these fakers have Munchhausens . There have been highly publicised cases of people having numerous private/ NHS adhd assessments and comparing results

 

[CarmenGhia]

I decided not to pursue a full diagnosis after my GP advised me that I'd find the process stressful and frustrating, and that it wouldn't open up any further treatment pathways for my coexisting problems.

I don't need an identity label. I know what my problems and limitations are. I do my best to work with and around them.

 

[Melian]

Where do you draw the line on that though? I'm in the middle of getting an unrelated diagnosis which would have happened years ago if anyone had listened to my parents concerns which is using resources. Highly unlikely to have be treatable

Youre right there's no support. I have a friend who has spent years on anti depressants for years because she was told it was depression, I'm sure if she'd been diagnosed properly she wouldn't have been on anti depressants

A diagnosis does mean that by law reasonable adjustments need to be made. If people work, access to work might help. And if they're at university they're entitled to disabled students allowance.

A diagnosis has meant that I can why I have the difficulties I do

 

[TapToBoreMeRigid]

I mask so heavily that I didn't realise it WAS a mask until I had trauma therapy. A diagnosis has saved my life and helped me understand my past actions and relationships. It has given me a sense of compassion for myself that, until diagnosis, I didn't have.

To know there isn't something inherently wrong with me as an individual is massively impactful in my day to day life.

 

[CarmenGhia]

What I understand is "masking" means that I can have a satisfying professional life and get the outcomes I need or want from situations.

The professional side of my work (I have multiple jobs) is the only thing that really makes me feel like a real human being. It's related to my special interests and I gain satisfaction from being good at it. If a bit of play-acting, and being outside my comfort zone temporarily, is what I need to do for this to work, then so be it. I can usually recharge with a bit of me time and quiet work.