How it feels to be diagnosed with autism later in life

R

ramboghettouk

Well-known member
Founding Member
Joined
Jan 7, 2008
Messages
14,356
Location
london
#21
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
 
S

simonr1978

Active member
Joined
Dec 22, 2018
Messages
30
#22
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

Luci

Well-known member
Joined
Mar 15, 2019
Messages
101
Location
England
#23
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.
 
R

ramboghettouk

Well-known member
Founding Member
Joined
Jan 7, 2008
Messages
14,356
Location
london
#24
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
 
P

Pejay

Active member
Joined
Aug 28, 2011
Messages
25
#25
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.
 
P

Pejay

Active member
Joined
Aug 28, 2011
Messages
25
#26
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!
 
P

Pejay

Active member
Joined
Aug 28, 2011
Messages
25
#27
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
 
R

ramboghettouk

Well-known member
Founding Member
Joined
Jan 7, 2008
Messages
14,356
Location
london
#31
i don't take diagnosis seriously, what i would say is with services looking to leave people and a benefit system all looking for excuses to cut, i'd be concerned about anything that gave them the excuse they're looking for

and i've been there in the past, it was on that estate i got called rambo, i was left because of some maybe well meaning attempt to rediagnose me, the only thing it did get me was i managed to bed a women
 
P

Pejay

Active member
Joined
Aug 28, 2011
Messages
25
#32
It started after I was bullied at work. I think that happened because of the Aspergers. To begin with it was just isolated incidents when I got very upset. Usually when something triggered reliving of being bullied. But eventually it became pretty much continuous with voices everyday, and only became bearable when I went on medication. The dose is quite high at the moment and I'm not suffering them often at present. I think the Aspergers makes it harder for me to cope with changes and makes me more anxious, and those things make me more vulnerable to psychosis. However it has been difficult for Dr's to believe I'm hearing voices because it looks different to the way it presents in people without Aspergers. He wants to put it all down to Aspergers, but hearing voices and paranoia are not listed in the definitions of Autism or Aspergers. It stands to reason that psychosis would look different and be experienced differently by people who are differently wired. My care coordinator is on board and being helpful so I'm managing well and am remarkably happy at present...... long may it last.
 
P

Pejay

Active member
Joined
Aug 28, 2011
Messages
25
#33
i don't take diagnosis seriously..."

Diagnosis affects the way people relate to you, how they treat you and the kind of care you receive. If it makes no sense it also undermines your identity and creates an existential struggle to be recognised for who you truly are. That at least is my experience, so I take diagnosis extremely seriously. Getting a diagnosis, in my case two of them, that made sense has transformed my life and the care I receive. I am happy in my own skin now and not continually seeking to become visible.
 
L

linus

Well-known member
Joined
Mar 27, 2019
Messages
199
Location
Eastern Europe
#34
My son (17 years old) entered in a psychotic episode almost 3 months ago and we have been told for the first time that he is "Asperger". For a while we've been told that it is not important now and we should only focus on the psychotic episode (paranoid delusional + huge anxiety). Now as he seems to be more connected to the reality (somehow I don't think that the delusional ideas will ever pass) we come to realise a lot of things about his past behaviour that seem to be Asperger related, even his therapist told us today that she would confirm this "diagnosis". He entered the psychosis, not because of Asperger, but because of some illegal drugs, but we've been told that he had a premorbid condition started because of his Asperger (somehow he understands what everybody says ad litteram, no sarcasm/irony can be used and we made maybe too many stupid jokes about life and how he'll leave the house at the age 18, like we did, etc), so in a way he could have gone to this psychosis sooner or later even without the illegal drugs. Now we are starting to look into a deeper understanding of what does this diagnosis mean to him, to us (as carers) and I also think that it should be a relief knowing what you have to deal with.
 
R

ramboghettouk

Well-known member
Founding Member
Joined
Jan 7, 2008
Messages
14,356
Location
london
#35
aspergers wasn't around when i was 19 what was was hebephrenic schitzoprenia given to young people at the time last psychiatrist said thats an old diagnosis
 
P

Pejay

Active member
Joined
Aug 28, 2011
Messages
25
#36
Thank-you Linus. I think if you have a predisposition drugs will set it off. I didn't start with psychosis til later in life, maybe it would have come sooner if I took drugs. It is possible to live a full life despite psychosis, if you can self-manage. I rely heavily on my medication and putting it up or down depending on how well I am. What is or is not real is open to discussion. Have you come across the hearing voices network, and the paranoia network? They are both very helpful for learning to self manage, and for helping you feel that you are not alone with your experience. Good luck to you and your son.

Rambo, I didn't reply to the whole of your previous post because I didn't want to. I replied only to the bit I was interested in. I guess you must be a lot older than me as Aspergers was around my whole life, only it was assumed to be a mostly male thing. Apparently they now reckon it just looks different in girls who present much later in life with mental health problems. Unlike some psychiatric conditions, it is a neurological condition with a physical difference in brain structure, so actually very real.
 
R

ramboghettouk

Well-known member
Founding Member
Joined
Jan 7, 2008
Messages
14,356
Location
london
#37
i'd be concerned if i had some willy washy diagnosis that in these days of cuts it'd be used to leave me and cut my benefits having said that it's not as though they're leaving me and cutting benefits as it is
 
L

linus

Well-known member
Joined
Mar 27, 2019
Messages
199
Location
Eastern Europe
#38
aspergers wasn't around when i was 19 what was was hebephrenic schitzoprenia given to young people at the time last psychiatrist said thats an old diagnosis
Well, it disappeared in the meantime from DSM-5, but I guess it sounds nicer than "autism", at least in the country where I come from in which it is "mistaken" for mentally retarded. My son for example is a very bright teenager with very good educational results (IT, math and physics), however the psychosis brought him down quite hard in the last 3 months and this new diagnosis (for us) is making things even more tangled.
 
R

ramboghettouk

Well-known member
Founding Member
Joined
Jan 7, 2008
Messages
14,356
Location
london
#39
remember mother saying in birmingham we're not like that posh london psychiatrist of yours we call schitzoprenia schitzoprenia

then as she got old i'd say to her is this the latest policy of the national schitzoprenia fellowship west midlands branch, and i don't think thats nsf policy i suggest you check with central offfice

61 friday first contact with services age 19 as it says on my notes, shock treatnent at 19
 
L

linus

Well-known member
Joined
Mar 27, 2019
Messages
199
Location
Eastern Europe
#40
For how long do you have this psychosis? Being so self-aware does it count as psychosis anymore? And what kind of medication are you taking? For example my son after 2 months he has his medication reduced very low (Risperidone 1,25mg/day) and I read that this kind of dosage is only used for maintenance, although he still has this delusions, but he becomes more and more functional each day.