I waited over 9 years, now have a diagnosis, but still have no support. This country sucks at mental health care.
A teacher told me the other day 30% of her class were autistic the back log is going to be huge.
oddly a few years back i got mine in about a month
My 10 year old is on a waiting list for assessment (she’s been on the waiting list for about a year, and we’ve been told she’s got about another 2 years before she’s seen). She’s seen mental health nurses who have been amazing, and they agree that she almost certainly has autism, but can’t officially give a diagnosis, and can’t offer more than 6 support sessions before discharging.
We’ve been signposted to a bunch of local organisations for autism support, but they all need a diagnosis before they can offer anything.
We’ve had to pull her out of school and start home educating her due to her struggling to cope in the classroom and other pupils constantly picking on her for being different.
It’s beyond a joke.
My brother was diagnosed as a teenager and tbh I really don’t get why people would bother, I don’t get what you even get from having it diagnosed. From what I’ve seen from him there wasn’t much if anything new offered to him
My child missed the appointment because the letter said don’t come if you have a cough or cold. Called several times to rearrange no answer. Rearranged appointment is December 2024. Cheers.
The clinic is only sees 7 people once a month.
We will be going next time regardless of what illness she has.
I’m in my 40s and have suffered from anxiety and ocd since as long as I can remember. I’m now agoraphobic. I used to see nurses from the mental health team but when I was diagnosed with Aspergers a few years ago they discharged me. Now I have no professional help at all and I’m so worried about my benefits being stopped. I sometimes wish I had never been diagnosed.
I waited three years or so for my diagnosis, and literally the only thing they offered me was a local charity that takes autistic people to the cinema for days out… at £45 an hour (ticket price & snacks not included), which they admitted wasn’t even relevant for me.
I’m stuck in a minimum wage job because I don’t have the right face to pass job interviews, my mental health and self-confidence are in a race for rock bottom, and even the National Autism Society turned me away because they don’t work with job seekers (WTF?!).
Good mental health usually revolves around having control over your own life (choosing your career path, what hobbies you have, who you love, etc)… so how are autistic people supposed to be happy when the employers, general public, and even the support networks can’t (or won’t) help us achieve our ambitions?!
There is literally just one person for the North East of England doing autism
assessments. These assessments usually last most of the morning or afternoon per person. They are busy.
I’ve had some support post diagnosis from a community support team. But after a while if that help doesn’t get you back into work they discharge you. And work is a huge problem as I have had a fair few jobs that have ended with me having some sort of breakdown.
I can’t think what it is I’ll be able to manage and being brutally honest I think once my family support is no longer around and I’m inevitably kicked off welfare I feel like my only options are to suddenly find a job I can cope with after a lot of trial and error, win the lottery or kill myself. I don’t feel suitable for this world and I don’t know how any of you cope with it. But well done for managing whether autistic or not.
I’m nearly 60 so not any priority. I don’t work due to physical problems. I still want a diagnosis, partly because I want better medication and not just the cheapest thing my GP will throw at me and partly just validation for decades of bullying and abuse and people accusing me of being lazy and not trying. I’ll save and go private, I don’t spend a lot on anything anyway. I can save the amount I need quicker than an NHS waiting list for the same thing.
Our youngest currently 11 we fought since he was 6 months old health visitor insisted he was too young g gp would say go vac to health visitor then when he was discharged from the health visitor he became the gp’s problem kept insisting he was too young to tell school age began school insisted there was none widen r for referral go to gp . Go would insist it was something the school should deal with . This went back and forth continuously until y3 where the school acknowledged and put a referral in for NDT put asd because they didn’t know what to put down was finally put on the waiting list two years ago and was give an appointment finally last September. Attended the hour long question and answer session. Then told it could be another six months plus to be seen for his second appointment for investigation. In between all this we we were discharged from our social worker because there was nothing else they felt they could support with and the disability Childrens team have put him in a waiting list of 62 kids who go by life limiting abilities.
To cap it all of the response we get from school and I quote “life is hard”
God willing we might be able to get him a diagnosis before he starts comp
I’ve got multiple consultants one who I’ve been under the care of for 5 years and 2 psychiatrists saying I need to get assessed for autisim but GP says no so I’m not on the list despite when assessed scoring high enough to warrant it
I’m on the waiting list for an adult referral and was told the waiting list was over eight years long. Mean while I’ve got cptsd which I’m told is too complex for most NHS services so I’m being sent back and fourth whilst no one addresses the fact that I have visual and auditory hallucinations. Just left to it and told to reach out. Which you can only do so many times before you’re seen as a nuisance or hypochondriac by the nhs. Hell, I even had a psychiatric nurse tell me to ‘Just put on a hat and go outside’ which, despite putting in a formal complaint about, no one took me seriously and other staff have defended the nurse, saying he might have ‘worded it wrong’ and I probably ‘took it the wrong way’. This was after he said ‘have you ever considered the voices are just your own mind telling you to get a grip?’
It’s a systematic issue that there is a massive labour shortage to provide the social care and mental health care people expect.
If you’re an adult and get diagnosed, the real question is “so what?” – it’s not like the diagnosis leads to all that much benefit since you’re going to be deprioritised for an autistic kid and there’s not enough support for them either.
We don’t put enough value on social care so expect people doing that to take horrible wages and inadequate training.
Got diagnosed in June, no post diagnostic support offered. Still waiting to get mental health support for complex anxiety and depression caused by my adhd/autism that went undiagnosed for 23 years.
As a 40 year old woman I’ve been on the waiting list about a year now. There’s no ETA for me. Getting an official diagnosis would allow me to forgive myself everything I did and said wrong when I was younger, for crashing and burning out of every job I’ve had, for being overwhelmed about life in general when everyone else seems to just fucking cope with it in ways I can’t. I’m considering trying to find somewhere privately and put it on my credit card, because it would improve my mental health so much having an official answer to what I’ve suspected for so long.
The words “suspected autism” are irrelevant here. And unlike the people not getting their cancer screens and treatment, it’s not killing them.
Instead of having an institute staffed with helpers for all mental disabilities, it would be a lot more useful to have a social structure that accommodates people utilising half their functioning ability.
Say if we had a charitable institute managing an eco-sustainable farmland, we can have the anxiety prone and the mentally challenged to take up some animal care tasks whilst living in a communal environment. The structure doesn’t have to be targeting the disabled, just accommodating people with particular challenges.
We have a problem when we have government helpers that need to answer the question, “What job can I do?” For every individual. Society itself and the corporate job structure are challenging to people who don’t have a balanced social skillset that is often expected in a job.
19 comments
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I waited over 9 years, now have a diagnosis, but still have no support. This country sucks at mental health care.
A teacher told me the other day 30% of her class were autistic the back log is going to be huge.
oddly a few years back i got mine in about a month
My 10 year old is on a waiting list for assessment (she’s been on the waiting list for about a year, and we’ve been told she’s got about another 2 years before she’s seen). She’s seen mental health nurses who have been amazing, and they agree that she almost certainly has autism, but can’t officially give a diagnosis, and can’t offer more than 6 support sessions before discharging.
We’ve been signposted to a bunch of local organisations for autism support, but they all need a diagnosis before they can offer anything.
We’ve had to pull her out of school and start home educating her due to her struggling to cope in the classroom and other pupils constantly picking on her for being different.
It’s beyond a joke.
My brother was diagnosed as a teenager and tbh I really don’t get why people would bother, I don’t get what you even get from having it diagnosed. From what I’ve seen from him there wasn’t much if anything new offered to him
My child missed the appointment because the letter said don’t come if you have a cough or cold. Called several times to rearrange no answer. Rearranged appointment is December 2024. Cheers.
The clinic is only sees 7 people once a month.
We will be going next time regardless of what illness she has.
I’m in my 40s and have suffered from anxiety and ocd since as long as I can remember. I’m now agoraphobic. I used to see nurses from the mental health team but when I was diagnosed with Aspergers a few years ago they discharged me. Now I have no professional help at all and I’m so worried about my benefits being stopped. I sometimes wish I had never been diagnosed.
I waited three years or so for my diagnosis, and literally the only thing they offered me was a local charity that takes autistic people to the cinema for days out… at £45 an hour (ticket price & snacks not included), which they admitted wasn’t even relevant for me.
I’m stuck in a minimum wage job because I don’t have the right face to pass job interviews, my mental health and self-confidence are in a race for rock bottom, and even the National Autism Society turned me away because they don’t work with job seekers (WTF?!).
Good mental health usually revolves around having control over your own life (choosing your career path, what hobbies you have, who you love, etc)… so how are autistic people supposed to be happy when the employers, general public, and even the support networks can’t (or won’t) help us achieve our ambitions?!
There is literally just one person for the North East of England doing autism
assessments. These assessments usually last most of the morning or afternoon per person. They are busy.
I’ve had some support post diagnosis from a community support team. But after a while if that help doesn’t get you back into work they discharge you. And work is a huge problem as I have had a fair few jobs that have ended with me having some sort of breakdown.
I can’t think what it is I’ll be able to manage and being brutally honest I think once my family support is no longer around and I’m inevitably kicked off welfare I feel like my only options are to suddenly find a job I can cope with after a lot of trial and error, win the lottery or kill myself. I don’t feel suitable for this world and I don’t know how any of you cope with it. But well done for managing whether autistic or not.
I’m nearly 60 so not any priority. I don’t work due to physical problems. I still want a diagnosis, partly because I want better medication and not just the cheapest thing my GP will throw at me and partly just validation for decades of bullying and abuse and people accusing me of being lazy and not trying. I’ll save and go private, I don’t spend a lot on anything anyway. I can save the amount I need quicker than an NHS waiting list for the same thing.
Our youngest currently 11 we fought since he was 6 months old health visitor insisted he was too young g gp would say go vac to health visitor then when he was discharged from the health visitor he became the gp’s problem kept insisting he was too young to tell school age began school insisted there was none widen r for referral go to gp . Go would insist it was something the school should deal with . This went back and forth continuously until y3 where the school acknowledged and put a referral in for NDT put asd because they didn’t know what to put down was finally put on the waiting list two years ago and was give an appointment finally last September. Attended the hour long question and answer session. Then told it could be another six months plus to be seen for his second appointment for investigation. In between all this we we were discharged from our social worker because there was nothing else they felt they could support with and the disability Childrens team have put him in a waiting list of 62 kids who go by life limiting abilities.
To cap it all of the response we get from school and I quote “life is hard”
God willing we might be able to get him a diagnosis before he starts comp
I’ve got multiple consultants one who I’ve been under the care of for 5 years and 2 psychiatrists saying I need to get assessed for autisim but GP says no so I’m not on the list despite when assessed scoring high enough to warrant it
I’m on the waiting list for an adult referral and was told the waiting list was over eight years long. Mean while I’ve got cptsd which I’m told is too complex for most NHS services so I’m being sent back and fourth whilst no one addresses the fact that I have visual and auditory hallucinations. Just left to it and told to reach out. Which you can only do so many times before you’re seen as a nuisance or hypochondriac by the nhs. Hell, I even had a psychiatric nurse tell me to ‘Just put on a hat and go outside’ which, despite putting in a formal complaint about, no one took me seriously and other staff have defended the nurse, saying he might have ‘worded it wrong’ and I probably ‘took it the wrong way’. This was after he said ‘have you ever considered the voices are just your own mind telling you to get a grip?’
It’s a systematic issue that there is a massive labour shortage to provide the social care and mental health care people expect.
If you’re an adult and get diagnosed, the real question is “so what?” – it’s not like the diagnosis leads to all that much benefit since you’re going to be deprioritised for an autistic kid and there’s not enough support for them either.
We don’t put enough value on social care so expect people doing that to take horrible wages and inadequate training.
Got diagnosed in June, no post diagnostic support offered. Still waiting to get mental health support for complex anxiety and depression caused by my adhd/autism that went undiagnosed for 23 years.
As a 40 year old woman I’ve been on the waiting list about a year now. There’s no ETA for me. Getting an official diagnosis would allow me to forgive myself everything I did and said wrong when I was younger, for crashing and burning out of every job I’ve had, for being overwhelmed about life in general when everyone else seems to just fucking cope with it in ways I can’t. I’m considering trying to find somewhere privately and put it on my credit card, because it would improve my mental health so much having an official answer to what I’ve suspected for so long.
The words “suspected autism” are irrelevant here. And unlike the people not getting their cancer screens and treatment, it’s not killing them.
Instead of having an institute staffed with helpers for all mental disabilities, it would be a lot more useful to have a social structure that accommodates people utilising half their functioning ability.
Say if we had a charitable institute managing an eco-sustainable farmland, we can have the anxiety prone and the mentally challenged to take up some animal care tasks whilst living in a communal environment. The structure doesn’t have to be targeting the disabled, just accommodating people with particular challenges.
We have a problem when we have government helpers that need to answer the question, “What job can I do?” For every individual. Society itself and the corporate job structure are challenging to people who don’t have a balanced social skillset that is often expected in a job.