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How it feels to be diagnosed with autism later in life

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ramboghettouk

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one thing that worrys me is theres some diagnosis more stigmatising than schitzoprenia as far as getting help, hanging round me neck i haven't heard of
 
Per Ardua Ad Astra

Per Ardua Ad Astra

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It's a bum rap, that's for sure. The service-staffers have fuck all right to cock a snoop at us, and pass judgement. Fuck all right :)
 
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Pejay

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I don't know about you, but a diagnosis is only attractive if it helps to explain. Mental Health problems are so frightening, and isolating, finding others with similar problems is essential, and sometimes that cannot happen without some sort of label that makes sense to guide you to the right people. It is very clear that a lot of people who have asd have been misdiagnosed both as having and not having mental health problems.

I went through hell with a Personality Disorder diagnosis because the services could see that I was different but didn't know enough about ASD to recognise it. I also went through hell because they did not believe I was having hallucinations. Even now the Dr wavers as to whether it is psychosis or not. The paper Ram linked says that we don't answer quetions the same way as neurotypicals so our symptoms are masked or distorted as a result.

They wouldn't let me have an ASD assessment for years - but finally at the tender age of 53 I was diagnosed. Finally things are making sense - but also sadness that there are things about myself that I won't be able to change.
 
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ramboghettouk

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i maybe autism or aspergers but where does that get me, if my claim for esa or pip has a gps reply of aspergers i'd be concerned what the clark would make of it, probably a cut

and i'd still be mainly unfit for work, with an unemployment history it's practically impossible to explain and maybe i'd also fail a crb check due to teling some police bigot i was schitzoprenic, the psychiatrist said why did you tell the police you were schitzoprenic when i say your not, i said they asked me what the drugs were for and thats what it says on the box

i have been rediagnosed caused me immense hardship, glad when i got the old schitzo diagnosis back, as it is they've closed my case
 
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Pejay

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Hi, diagnosis appears to me to be pretty inexact. The DWP, if you're in the UK, don't work on diagnosis, they work on how your disability affects you and score against that. Perhaps you can see if there is a benefits adviser in your area who could help you with the forms?

Have you asked for an ASD assessment? Not everywhere does adult assessments, my assessment for dyspraxia had to come through Individual Patient Commissioning.

Because its a spectrum some people with ASD are fit for work. In fact they excel in some jobs - particularly those that don't depend on sophisticated relationship skills.

I tried to work so I have dismissal letters from employers explaining why I'm not fit for work. However I do really want to get back to work if I can find an employer willing to work around my problems.

The DWP didn't even give me a face to face assessment at the outset and said I scored zero. I appealed and had to face a panel. I was so freaked out that they did not take long to decide I met the criteria. It is a horrible system.

Hope you can negotiate with you Dr to get what you need, yours Pejay
 
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ramboghettouk

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heard a rumour that dwp decision makers are advised if a schitzoprenic isn't better in 2yrs they won't get bettter, autism can be a high functioning illness

had a friend who'd be on about hypermanic episodes of an affective nature, took it seriously then he had a tribunal, they sent him the paperwork, the gp had said paranoid schitzoprenia
 
simonr1978

simonr1978

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I'm genuinely curious about how you approach getting a diagnosis in later life. I'm in my early 40s now and I think there's a strong possibility that I'm somewhere on the mild end of the autistic spectrum. I worked through one of the OU's free courses recently which was about understanding autism and was struck how most of the symptoms they mentioned applied, even if only relatively mildly, to me. I've done a few online tests and even allowing for confirmation bias I score quite highly (Usually well into the "Probable/Likely" end of the criteria), although I also score quite highly in similar tests for being a sociopath (Not conflating the two issues, but there seems to be a degree of cross-over in my case at least).
 
Luci

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What's the difference between autism and aspergers? I definitely don't like sitting next to people on their mobiles, or people eating crisps or crying children. I have to move away, and when their is a loud sound on the tube I have to put my fingers in my ears. Is that a sign of it?
There is no 'difference' between aspergers and autism. Aspergers was used to describe a child with autism who had no speech delay when they were younger as this is a common trait in autism. However many services stopped diagnosing aspergers around 3 years ago as they feel all it does it muddy the waters having a term that explains the same thing. Diagnosis now tends to be Autism spectrum disorder as everyone can fit under that umbrella. My son would have most certainly gotten a diagnosis of aspergers if he was diagnosed earlier.
 
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ramboghettouk

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aspergers first appeared among private psychiatrists who knew that if they diagnosed one of the more serious mental illnesses, the patient would go elsewhere and the money would dry up
 
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Pejay

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There is no 'difference' between aspergers and autism. Aspergers was used to describe a child with autism who had no speech delay when they were younger as this is a common trait in autism. However many services stopped diagnosing aspergers around 3 years ago as they feel all it does it muddy the waters having a term that explains the same thing. Diagnosis now tends to be Autism spectrum disorder as everyone can fit under that umbrella. My son would have most certainly gotten a diagnosis of aspergers if he was diagnosed earlier.
Autism is a spectrum, and Aspergers is at the high functioning end of that spectrum. In the new American definitions the term has been dropped, but it still exists in the European definitions.
There is also a campaign to drop the Disorder bit of Autism spectrum, because we are not disordered, we are different.
 
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Pejay

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I'm genuinely curious about how you approach getting a diagnosis in later life. I'm in my early 40s now and I think there's a strong possibility that I'm somewhere on the mild end of the autistic spectrum. I worked through one of the OU's free courses recently which was about understanding autism and was struck how most of the symptoms they mentioned applied, even if only relatively mildly, to me. I've done a few online tests and even allowing for confirmation bias I score quite highly (Usually well into the "Probable/Likely" end of the criteria), although I also score quite highly in similar tests for being a sociopath (Not conflating the two issues, but there seems to be a degree of cross-over in my case at least).
Hi Simon, there are a few options, depending on where you live. Firstly if you can afford it, you could go private. You will probably find psychologists through the internet capable of helping you, but be sure they are fully registered with HCPC.

In Wales there is an autism service which does diagnosis. Other parts of the UK may be different. You may need to do some research to find local NHS options. If all else fails you can ask through 'Individual Patient Commissioning' which is a method of funding assessments that would not otherwise be available. Good luck!
 
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Pejay

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Autism in later life

Hello

I have recently been diagnosed with Autism and dyspraxia at the grand old age of 62.

Also, suffering this week after finally coming off meds after 23 years.

Any others recently diagnosed with similar conditions who can relate, please? I live in Manchester, UK

Hugs

Avril

Hi Avril, I was diagnosed with dyspraxia in 2010, and Autism spectrum in 2016. I'm 56 now. Living in South West Wales. It was all rather a revelation. My son laughs at my clumsiness, and I just count the bruises. But it is still novel to be on the autism spectrum. Things make sense much more, and the mental health service has changed the way they relate to me completely.

I am one of those who has both AS and psychosis, although I think this dual diagnosis is often missed and people with both don't get the care and support they need. I hoping to start up a support group here. If you want I'll let you all know how it goes.

Good luck
 
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Pejay

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Hi Pejay,

How did you get in psychosis?
Sorry Linus, I don't understand the question. Do you mean how did I get diagnosed, or how does it feel to also have a psychosis????
 
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linus

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How did the psychosis started? Did you have multiple episodes? Do you think it’s related to your Asperger?
 
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