I can believe this. I’m waiting for assessment now and it’s only because someone I respect greatly has told me I might benefit from it. Most of my life I’ve just put things down to either I’m just inherently a bad person or I’m incredibly lazy and just not trying hard enough.
Autism to me was ‘Rain Man’ and it seems that definitions have developed since then.
I went to the doctor and he IMMEDIATELY dismissed me saying it would of been caught when I was a child and refused to test me.
Also I’ve heard that the government can get you involved with social services if your autistic and a parent, I’m not putting my child through that.
Not that there’s any point getting an adult diagnosis anyway as most regions have had to cut the support services away to nothing since 2010.
There are long waiting lists for autistic assessments on the NHS. Two family members had private assessments as adults and it has greatly benefited them. Lots of things make more sense to the whole family now and it’s a pity it didn’t happen years ago. I think it varies a lot how much support there is for diagnosed children which is very wrong but a diagnosis is beneficial, in my opinion.
“Living for so long without a diagnosis can have consequences — especially for mental health, says lead investigator William Mandy, professor of neurodevelopmental conditions at University College London in England. “If you don’t have the label,” he says, “you’re less likely to get the adaptations and the support that you might need.” “
So this is why this issue matters. Kudos to the journalist for actually bothering to explain this.
A lot of assesments are geared towards children, like you have to play with dolls and stuff like that.
How does the diagnosis help older people?
I thought it was just for school.
I’ve been on the waiting list for over four years. My NHS trust is unable to run the service, and the outsourced private company that does it for them doesn’t take individuals who have a history of mental health issues….
I’m glad that I got diagnosed while I was a child. The myths that keep going around about autism haven’t really helped matters.
What’s the point in getting diagnosed as an adult, it’s not a treatable condition.
They have an agenda of underdiagnosis due to funding. I am very clearly autistic, and after waiting almost a year for an assessment was told that I exhibited loads (my report was a long long list) of traits but not quite enough for them to give me the diagnosis. Got an unofficial second opinion from an expert who read through my report and said that I absolutely needed to be reassessed.
The experience was traumatic and left me feeling helpless so I never ended up seeking it out, just decided to accommodate for myself best I can which has helped my quality of life a fair bit. Since learning that diagnoses can affect getting visas I’m a little grateful as I am planning on moving away from the U.K. at some point when I can, but the system in itself is fucked.
The research I did at the time revealed a lot of similar stories, and I found out that it costs them £1000 per person to issue the diagnosis, and then have to spend more if that person accesses support services. At the time I was working full time and had a social life. Since then I’ve completely burned out and have barely any friends because I don’t have the capacity for much else than making sure I’m fed watered and entertained throughout these really difficult days. This happened because I could only mask for so long (as I was at the time of the assessment) before my brain and body gave out. The lack of diagnosis forced me to live the life of an able bodied neurotypical person. And I’m not built for that. Society isn’t built for us.
I waited two and a half years for an assessment.
When I did finally get one, I went along to the appointment only to find out that they’d scheduled an assessment for depression.
Another six months later I finally got an appointment for an autism assessment which consisted of being asked four questions such as asking if I had any hobbies and details about friends and family members.
The assessors conclusion on the spot, within ten minutes was that I couldn’t be autistic as I was aware of the details of other people’s lives instead of being entirely self focused and then went on to say that they believed based on my hobby at the time (movie prop replication) that her diagnosis is I’m just “a bit geeky” and socially awkward.
Not only did I feel completely dejected after such a long wait to even get to the point of the so called assessment but also utterly insulted and humiliated.
Needless to say, I didn’t pursue any sort of second opinion and have lost all confidence in the competence and care provided by that sector of our health service.
No point, I am not going to get any support, and I don’t want that flag, as it will prevent me from doing things.
I was referred by my GP for autism in January of this year.
Heard nothing since. There must be a huge backlog of patients waiting to be assessed.
It’s not as though it’s worth going private either. I saw a show on the BBC about private practices incorrectly diagnosing people with ADHD and prescribing medication for it. The poor patients we’re paying a lot of money for this.
They were diagnosing them within 45 minutes of speaking with them on a zoom meeting.
The main guy who heads ADHD for the NHS spends at least 3.5 hours with the patients, face to face before any kind of diagnosis is offered.
Took me 10 years to get mine, in my mid 30s. And it was totally pointless. Nothing has changed. No help is available. People like me fall through the cracks as children because we don’t have any behavioural or learning difficulties so we’re just dismissed as being “quiet and shy” yet we’re actually suffering a lot.
Two year wait in the SE… my assessment is hopefully coming up in October
Maybe it’s got something to do with the 3+ year waiting lists.
The waiting times in Scotland are bad as well. I think I’ve been waiting 2 years or more due to some cock up with the paperwork.
It would be nice to know for sure though. It would explain many things in my life, like why I’m crap with jobs and making friends etc.
Just got turned down from getting an assessment this week after waiting months to hear anything because I already have diagnosed mental health conditions and physical disabilities. Not that there’s increasing research that every single one of those diagnoses has a strong comorbidity with ASD or anything.
The kicker was that they told me to get support instead from the existing services for the diagnoses I have already, but all of those services turned me away too for not being sick enough.
What’s the difference between a diagnosis and a formal diagnosis?
It’s because diagnoses don’t actually matter. They don’t really mean much in terms of getting support. SO is a psychologist, and has explained in detail the reasons why they don’t. But it basically boils down to, they don’t give out diagnosis as they will still get the support they need, and depending on the mental health condition try to resolve it without needing to put an official label on the patient.
Personally I have a psychological formula of PDST, and possible neoirodivergent (autism). The psychologist is trying to figure out if the few and mild autistic traits are due to autism or coping mechanisms I put in place for my childhood trauma. But I don’t have a diagnosis per se. And it doesn’t matter, I will still get the help and support I need, I will still get treatment, and the rest. And hopefully I can ease/cure my PDST without an “official diagnosis”.
All to say it’s just terminology. Us laymen have a different understanding of what it means to have a diagnosis compared to what the mental health sector understands what it means to have a diagnosis. And if an individual has mental health notes along the lines of a psychological formula they will get help for their condition(s).
Of course they do. When I was in school in the 80s and 90s the children who (with hindsight) clearly were on the spectrum were seen as being at best, eccentric and at worst, troublemaking nutters. It was disgraceful really.
I wonder how many of them are instead struggling with misdiagnosis.
So many autistic women I meet get diagnosed with borderline personality disorder, feel totally disconnected to the diagnosis, spend years hating themselves as they research the disorder and see how people talk about it, then find out they actually better fit the description of autism and/or ADHD.
I’m luckily that I managed to only have to wait around a year for my assessment…. It’s now a three year wait in my NHS trust…..
I went for a diagnosis about 10 years ago. I had to pull out after my kids school found out, and decided it was the reason for them struggling with mainstream. Since then, I don’t dare to for it again, it’s not worth the hassle
I’ve always wondered if me myself has it. I keep saying to myself I should get checked, all my friends do, my partner does, I just never bother. I feel like that it would be a waste of time and money because of how many people on the internet attribute basic stuff to things like ADHD and autism and it worries me that thinking I do because of just a few things will make me like that too.
Good luck getting a diagnosis for n. divergence. Many gp’s don’t even believe an adult can have adhd.
27 comments
I can believe this. I’m waiting for assessment now and it’s only because someone I respect greatly has told me I might benefit from it. Most of my life I’ve just put things down to either I’m just inherently a bad person or I’m incredibly lazy and just not trying hard enough.
Autism to me was ‘Rain Man’ and it seems that definitions have developed since then.
I went to the doctor and he IMMEDIATELY dismissed me saying it would of been caught when I was a child and refused to test me.
Also I’ve heard that the government can get you involved with social services if your autistic and a parent, I’m not putting my child through that.
Not that there’s any point getting an adult diagnosis anyway as most regions have had to cut the support services away to nothing since 2010.
There are long waiting lists for autistic assessments on the NHS. Two family members had private assessments as adults and it has greatly benefited them. Lots of things make more sense to the whole family now and it’s a pity it didn’t happen years ago. I think it varies a lot how much support there is for diagnosed children which is very wrong but a diagnosis is beneficial, in my opinion.
“Living for so long without a diagnosis can have consequences — especially for mental health, says lead investigator William Mandy, professor of neurodevelopmental conditions at University College London in England. “If you don’t have the label,” he says, “you’re less likely to get the adaptations and the support that you might need.” “
So this is why this issue matters. Kudos to the journalist for actually bothering to explain this.
A lot of assesments are geared towards children, like you have to play with dolls and stuff like that.
How does the diagnosis help older people?
I thought it was just for school.
I’ve been on the waiting list for over four years. My NHS trust is unable to run the service, and the outsourced private company that does it for them doesn’t take individuals who have a history of mental health issues….
I’m glad that I got diagnosed while I was a child. The myths that keep going around about autism haven’t really helped matters.
What’s the point in getting diagnosed as an adult, it’s not a treatable condition.
They have an agenda of underdiagnosis due to funding. I am very clearly autistic, and after waiting almost a year for an assessment was told that I exhibited loads (my report was a long long list) of traits but not quite enough for them to give me the diagnosis. Got an unofficial second opinion from an expert who read through my report and said that I absolutely needed to be reassessed.
The experience was traumatic and left me feeling helpless so I never ended up seeking it out, just decided to accommodate for myself best I can which has helped my quality of life a fair bit. Since learning that diagnoses can affect getting visas I’m a little grateful as I am planning on moving away from the U.K. at some point when I can, but the system in itself is fucked.
The research I did at the time revealed a lot of similar stories, and I found out that it costs them £1000 per person to issue the diagnosis, and then have to spend more if that person accesses support services. At the time I was working full time and had a social life. Since then I’ve completely burned out and have barely any friends because I don’t have the capacity for much else than making sure I’m fed watered and entertained throughout these really difficult days. This happened because I could only mask for so long (as I was at the time of the assessment) before my brain and body gave out. The lack of diagnosis forced me to live the life of an able bodied neurotypical person. And I’m not built for that. Society isn’t built for us.
I waited two and a half years for an assessment.
When I did finally get one, I went along to the appointment only to find out that they’d scheduled an assessment for depression.
Another six months later I finally got an appointment for an autism assessment which consisted of being asked four questions such as asking if I had any hobbies and details about friends and family members.
The assessors conclusion on the spot, within ten minutes was that I couldn’t be autistic as I was aware of the details of other people’s lives instead of being entirely self focused and then went on to say that they believed based on my hobby at the time (movie prop replication) that her diagnosis is I’m just “a bit geeky” and socially awkward.
Not only did I feel completely dejected after such a long wait to even get to the point of the so called assessment but also utterly insulted and humiliated.
Needless to say, I didn’t pursue any sort of second opinion and have lost all confidence in the competence and care provided by that sector of our health service.
No point, I am not going to get any support, and I don’t want that flag, as it will prevent me from doing things.
I was referred by my GP for autism in January of this year.
Heard nothing since. There must be a huge backlog of patients waiting to be assessed.
It’s not as though it’s worth going private either. I saw a show on the BBC about private practices incorrectly diagnosing people with ADHD and prescribing medication for it. The poor patients we’re paying a lot of money for this.
They were diagnosing them within 45 minutes of speaking with them on a zoom meeting.
The main guy who heads ADHD for the NHS spends at least 3.5 hours with the patients, face to face before any kind of diagnosis is offered.
Took me 10 years to get mine, in my mid 30s. And it was totally pointless. Nothing has changed. No help is available. People like me fall through the cracks as children because we don’t have any behavioural or learning difficulties so we’re just dismissed as being “quiet and shy” yet we’re actually suffering a lot.
Two year wait in the SE… my assessment is hopefully coming up in October
Maybe it’s got something to do with the 3+ year waiting lists.
The waiting times in Scotland are bad as well. I think I’ve been waiting 2 years or more due to some cock up with the paperwork.
It would be nice to know for sure though. It would explain many things in my life, like why I’m crap with jobs and making friends etc.
Just got turned down from getting an assessment this week after waiting months to hear anything because I already have diagnosed mental health conditions and physical disabilities. Not that there’s increasing research that every single one of those diagnoses has a strong comorbidity with ASD or anything.
The kicker was that they told me to get support instead from the existing services for the diagnoses I have already, but all of those services turned me away too for not being sick enough.
What’s the difference between a diagnosis and a formal diagnosis?
It’s because diagnoses don’t actually matter. They don’t really mean much in terms of getting support. SO is a psychologist, and has explained in detail the reasons why they don’t. But it basically boils down to, they don’t give out diagnosis as they will still get the support they need, and depending on the mental health condition try to resolve it without needing to put an official label on the patient.
Personally I have a psychological formula of PDST, and possible neoirodivergent (autism). The psychologist is trying to figure out if the few and mild autistic traits are due to autism or coping mechanisms I put in place for my childhood trauma. But I don’t have a diagnosis per se. And it doesn’t matter, I will still get the help and support I need, I will still get treatment, and the rest. And hopefully I can ease/cure my PDST without an “official diagnosis”.
All to say it’s just terminology. Us laymen have a different understanding of what it means to have a diagnosis compared to what the mental health sector understands what it means to have a diagnosis. And if an individual has mental health notes along the lines of a psychological formula they will get help for their condition(s).
Of course they do. When I was in school in the 80s and 90s the children who (with hindsight) clearly were on the spectrum were seen as being at best, eccentric and at worst, troublemaking nutters. It was disgraceful really.
I wonder how many of them are instead struggling with misdiagnosis.
So many autistic women I meet get diagnosed with borderline personality disorder, feel totally disconnected to the diagnosis, spend years hating themselves as they research the disorder and see how people talk about it, then find out they actually better fit the description of autism and/or ADHD.
I’m luckily that I managed to only have to wait around a year for my assessment…. It’s now a three year wait in my NHS trust…..
I went for a diagnosis about 10 years ago. I had to pull out after my kids school found out, and decided it was the reason for them struggling with mainstream. Since then, I don’t dare to for it again, it’s not worth the hassle
I’ve always wondered if me myself has it. I keep saying to myself I should get checked, all my friends do, my partner does, I just never bother. I feel like that it would be a waste of time and money because of how many people on the internet attribute basic stuff to things like ADHD and autism and it worries me that thinking I do because of just a few things will make me like that too.
Good luck getting a diagnosis for n. divergence. Many gp’s don’t even believe an adult can have adhd.