Been waiting since October 2022 for an autism assessment for my son. I rang a month ago to check we were even on the list. They couldn’t give any idea on how much longer the wait would be. I was initially told a year from referral.
They provide zero fucking care to those of us that do! Any parent will know this when that child moves into an adult centered support structure. I sure as fuck know it
Medication is meant to be done hand in hand with a structured session organized frequently, nowadays they can’t even care about the medication, doesnt stop the NHS uselessly prescribing astoundingly terrible online resources to save themselves the quids
I was told last week that the waiting list where I am is now at 10 years for an assessment (paediatric). Even through right to choose it’s up to 2 years with most providers.
I’m lucky my son’s school have been able to access additional funding for him and are really on it with implementing interventions etc but 10 years for an assessment is just mental.
I’ve known my kid has neurodiverse issues since he was very young, he’s now 6 and only this morning has a new doctor took one look at him and said that he’s absolutely neurodiverse and she could tell from speaking to him for 5 minutes.
I’m worried about his future, I do my best to parent him but his lack of communication, focus, and the fact that the doctor said that they’re overwhelmed and he’s on a long list really worries me.
He’s getting speech and language therapy at school and has one to one support but he’s so behind at school that they’re worried, as am I.
No, but I’ll point out no country over 5 million would be able to manage an pretty unprecedented explosion on assessment requests like we’ve seen in the last 5-10 years. It’s pretty remarkable
What are they even providing for autism support for adults in the first place? Every area I’ve been in since my diagnosis, if you can get through to any service at all, just hands you a list of local charities you can contact yourself. They don’t actually do anything for you themselves beyond the diagnosis.
I waited two years for an adult diagnosis referral. The guy called me twice, asked me banal and pointless questions such as do I find it difficult to handle cotton wool, leaving me quite unimpressed with the clinical robustness of the entire process. Then his secretary (presumably) sent me someone else’s notes in the post (which were *brutally* personal) and then they said they would schedule a third appt which never happened. No letter. Nothing.
Absolute shambles.
I have been diagnosed with Asperger’s about 20 years ago in another country, never brought the paperwork with me. So, I decided to redo the thing, its just like 5 appointments…
I started the procedure in March 2021, 6 months ago I have received a letter telling me that next stage will be happening in the second half of 2026 (third time it has been postponed). When I pressured them, I was told that there is 860 people in front of me. Their Adult assessment group has only funding of half a day a week. Realistically I will be long dead before I make it to the front of the queue.
It’s not for benefits, it just allows me to sit some exams in a room with just an assessor and not 200 other people. I would go private, but the private ones just sell whatever you ask for and are not exactly “recognized”.
Yup got told my assessment will cost thousands privately and it is going to take around 4 years for the NHS (6 months in) from an appointment which took months to get in the first place
I think I’ve got ADHD.
Have I sought testing? Nope, because it won’t change anything for me. It’s just another lable to give someone who’s different from someone else?
Considering I’ve had a prescription for adhd meds for 6 months (after waiting 5 years to get diagnosed) and still haven’t had one pelrescription filled, this isn’t hard to believe.
I went on an ADHD waiting list in October 2021. Was told at the time it will be a 24 month wait. Contacted them last month as I hadn’t heard anything back, it’s now 48 months average and they’re only just now booking in people referred to them at the start of 2021. I’ve heard it’s worse in other parts of the country. If I move out of the borough, I get booted off the list and have to start over elsewhere.
Is there anything that the NHS actually is meeting demand for?
They shouldve diagnosed these people in their childhoods then
I went as a kid about 40 times and was told im just a happy child.
Go see a dr 20 years later and he said i had the worst case of adhd hes ever seen and anyone who couldnt see that isnt fit to be a doctor.
Can it meet any demand thanks to our glorious leaders.
I have severe learning disabilities in my family that need daily care for the basics, who receive limited help
I’m sorry and sympathsies with the struggle, but when read comments from adults on here who can write whole sentences on their own, expecting any assistance at all post diagnosis for mild autism, i have to wonder what planet they are living on that they expect this from the current system
I’m not saying that NHS shouldn’t be providing these services. But clearly the current system is over capacity for severe cases, and mild cases aer simply going to be kicked into the 2030s
The issue is also that trauma can trigger autism/ADHD symptoms which should be explored before any proper assessment.
Another thing about diagnosis like autism or ADHD is that it doesn’t change how people see or act towards you and if they do its usually less than.
Demand for what? What can the NHS do about it? If there’s a problem, it’s up to other places like schools to accommodate it’s students with ADHD/autism, for workplaces to be more tolerant etc. All the NHS can do is diagnose it and suggest how to adapt to it, it’s not their job to fix it.
No shit. I’ve had to pay a couple thousand pounds to get diagnosed and treated privately for ADHD. The alternative was waiting two years to be seen by the NHS. It was well worth the money, but it’s a disgrace that mental health has become a luxury for those with some disposable income.
Yep and I’m still told I’m at least two years on the waiting list till I can be assessed.
Even though I have been diagnosed as a child with ADHD, Dyspraxia, speech disorder etc but my diagnosis now is to seek medication.
Everyone will have ADHD and Autism soon. Most people just can’t be arsed handling life so it’s easier to get diagnosed and live for free forever with no responsibility
I was on a waiting list for 2 1/2 years for my diagnosis. When I eventually got an appointment in 2019, I went to a “specialist centre” for it. I was expecting it to be heaving; after all, they had such high demand that the specific time slot they gave me was the first available in 2 years, right? If I couldn’t make that slot I was told it would possibly be another year until another one opened up.
It was completely deserted. The car park was empty, and there were no other patients in there when I arrived, when I left, or, as far as I could tell, in any of the rooms. As far as I could saw, there was one examiner and two assistants, which was all the staff in the entire building.
Let me reiterate that this was a **specialist** facility. A place that did nothing other than Autism and ADHD stuff for the whole city. As far as I can tell from my experience, the inability to meet demand is because the allocated resources are literally pitiful. If funding for even one extra doctor was allocated, that facility could double the number of patients it could examine.
No shit. My kid was put on an assessment list when she was 4, she’s nearly 9. Not a peep past reassurances it’s coming.
Nobody has even met my kid yet for anything really.
NHS unfortunately never been Tory priority. You can’t make money from free healthcare. Because of guía, they can’t safely meet demand across healthcare. Blame the people in charge of yes man Rishi and Co
You’re telling me. I’ve been waiting 3 years for my assessment and to go private will cost thousands
I think it’s because we’re not getting to why many people are being diagnosed with autism. Treating the symptoms is only one side of the coin.
My psychiatrist said she’s getting between 7 – 10 private referrals for ADHD and autism every day. It took me 3 months just to get an initial appointment privately, can’t imagine what that would be like on the NHS.
I’ve only just got back on my meds back after 3 and a half months of shortage. Fortunately I’ve discovered Lions Main is a pretty good substitute
I would like to point out that we also now live in a world where psychological research and awareness is ever evolving and getting better at diagnosing neurodiverse people.
My bug bear is people saying it’s a bad thing that people are now getting support and treatment based on the lack of support they received. My life would have been vastly different, had I of been diagnosed sooner and received the level of support I’m now able to access.
For most that had supportive and loving environments to grow up in dispite their neurodiversity, they tend to develop coping mechanisms and strategies, good habits, as they get older.
For those that didn’t have that environment in early development, you don’t learn the coping, you don’t develop strategies, you feel like a burden, you struggle day in day out, and after fighting to get the help, the help is over stretched, underfunded and misunderstood.
It’s in the name, and each person who is diagnosed as neurodiverse, is as diverse as the next one, so tired of people taring everything with the one ol’brush.
Nothing in life is a one size fits all, flexibility, understanding, open and candid communication, no judgement are in my opinion the only way to move forward. Not a singular one person is any less human than the person next to them despite any difference, we all just exist as a singular species floating on a rock in space.
As a species we are as diverse in the universe as our minds are from on another’s. Be kind, celebrate diversity.
Been on the ADHD assessment waiting list for 2 years 🥳 let me just find £1,000 up my arse to go privately. I’m almost certain I’ve got it (as are my healthcare worker parents). Only reason I care is so my employer has to give me reasonable adjustments at work 😁
I was waiting from September 2015 until December 2023 for my ADHD assessment. I had a doctor’s appointment and was put on the list in my first month at university.
In that time at uni, I had to repeat 2 years, still failed and only got a DipHE, almost killed myself twice, was bounced all over the place looking for a diagnosis that /definitely/ wasn’t adhd I was just sad and anxious and just a silly little girl, moved away and isolated myself during lockdown, enjoyed creative but ultimately 0 pay jobs, and now I’ve ended up in a dead end no progression job that’s bearly over minimum wage, which I was struggling with because it’s an open plan office with high stress and no routine. Oh and I’m fat now because I’m binge eating.
Thankfully in December, I finally got my appointment, my diagnosis (combined type ADHD with autistic traits) and it’s been great, got prescribed medication and told to seek out some therapy, ADHD work and life coaching. If my ADHD assessment was like a COVID test it would be two thick dark lines the second it came into contact with my brain juice.
All was good until the medication shortages.
Important notes:
– please search NHS right to choose so you can access the treatment you need. It the NHS the same to use a private hospital as it would an NHS hospital. The wait lists, while long, are shorter than the current NHS wait lists.
– please don’t forget that talking therapies are probably a necessary part of ADHD treatment, along with coaching which can be paid for by the Access to Work scheme (you need to be in a job), or just basic calls with Able Futures.
– if you are given the option of ADHD medications, they’re all really different and it takes time to titrate so please don’t give up hope.
Chiming it to say it’s not only not meeting demands, but has actively reduced its capacity for ADHD diagnosis and help in a significant manner.
The handling of the medication shortage and ongoing help for ADHD these past years has been awful, and if it was any other sort of condition it would have been condemned, yet here with ADHD die to it’s incorrect view in society it’s been ignored.
People have died without the medication, and many more continue to without diagnosis. It’s fucking saddening to a degree I can’t express, especially as it’s personally effected myself and my loved ones.
> Our study highlighted a significant association between the daily hours spent on devices and having an SCQ score above 15, which suggests a deficit in social skill development and having autism spectrum disorder-like symptoms.
Yay for likely having a bit of both lol! Partner is having to go private (thankfully we’re in a position to afford it) on an ADHD diagnosis, as NHS would be about 6 years (and have heard worse). So many people coming to realise that they’ve likely gone through life with one, the other, or both.
It’s not just ADHD and Autism. I have been told by two healthcare professionals I have symptoms of OCD but they can’t diagnose me and I had to be referred. It’s impossible, and I mean impossible to access a diagnostic assessment for these kind of MH issues. I’ve gone round in circles, and they make you do the same stupid assessment on the phone (which isn’t the actual assessment) and then will phone you back once when you can’t pick up and call it a day. No waiting list referral or anything.
Perhaps if so many people have it, we could drop the label and instead embrace the fact that all humans are different and try to change society rather than dampen them with drugs?
At this point it would be easier to just list the things that the NHS *can* meet demand for, because care is basically non-existent for things like gender, autism, ADHD, mental health, etc……
2.5 years waiting list in Derbyshire? Must be nice to be seen so quickly. I expect to be waiting at least 4 years.
38 comments
Been waiting since October 2022 for an autism assessment for my son. I rang a month ago to check we were even on the list. They couldn’t give any idea on how much longer the wait would be. I was initially told a year from referral.
They provide zero fucking care to those of us that do! Any parent will know this when that child moves into an adult centered support structure. I sure as fuck know it
Medication is meant to be done hand in hand with a structured session organized frequently, nowadays they can’t even care about the medication, doesnt stop the NHS uselessly prescribing astoundingly terrible online resources to save themselves the quids
I was told last week that the waiting list where I am is now at 10 years for an assessment (paediatric). Even through right to choose it’s up to 2 years with most providers.
I’m lucky my son’s school have been able to access additional funding for him and are really on it with implementing interventions etc but 10 years for an assessment is just mental.
I’ve known my kid has neurodiverse issues since he was very young, he’s now 6 and only this morning has a new doctor took one look at him and said that he’s absolutely neurodiverse and she could tell from speaking to him for 5 minutes.
I’m worried about his future, I do my best to parent him but his lack of communication, focus, and the fact that the doctor said that they’re overwhelmed and he’s on a long list really worries me.
He’s getting speech and language therapy at school and has one to one support but he’s so behind at school that they’re worried, as am I.
No, but I’ll point out no country over 5 million would be able to manage an pretty unprecedented explosion on assessment requests like we’ve seen in the last 5-10 years. It’s pretty remarkable
What are they even providing for autism support for adults in the first place? Every area I’ve been in since my diagnosis, if you can get through to any service at all, just hands you a list of local charities you can contact yourself. They don’t actually do anything for you themselves beyond the diagnosis.
I waited two years for an adult diagnosis referral. The guy called me twice, asked me banal and pointless questions such as do I find it difficult to handle cotton wool, leaving me quite unimpressed with the clinical robustness of the entire process. Then his secretary (presumably) sent me someone else’s notes in the post (which were *brutally* personal) and then they said they would schedule a third appt which never happened. No letter. Nothing.
Absolute shambles.
I have been diagnosed with Asperger’s about 20 years ago in another country, never brought the paperwork with me. So, I decided to redo the thing, its just like 5 appointments…
I started the procedure in March 2021, 6 months ago I have received a letter telling me that next stage will be happening in the second half of 2026 (third time it has been postponed). When I pressured them, I was told that there is 860 people in front of me. Their Adult assessment group has only funding of half a day a week. Realistically I will be long dead before I make it to the front of the queue.
It’s not for benefits, it just allows me to sit some exams in a room with just an assessor and not 200 other people. I would go private, but the private ones just sell whatever you ask for and are not exactly “recognized”.
Yup got told my assessment will cost thousands privately and it is going to take around 4 years for the NHS (6 months in) from an appointment which took months to get in the first place
I think I’ve got ADHD.
Have I sought testing? Nope, because it won’t change anything for me. It’s just another lable to give someone who’s different from someone else?
Considering I’ve had a prescription for adhd meds for 6 months (after waiting 5 years to get diagnosed) and still haven’t had one pelrescription filled, this isn’t hard to believe.
I went on an ADHD waiting list in October 2021. Was told at the time it will be a 24 month wait. Contacted them last month as I hadn’t heard anything back, it’s now 48 months average and they’re only just now booking in people referred to them at the start of 2021. I’ve heard it’s worse in other parts of the country. If I move out of the borough, I get booted off the list and have to start over elsewhere.
Is there anything that the NHS actually is meeting demand for?
They shouldve diagnosed these people in their childhoods then
I went as a kid about 40 times and was told im just a happy child.
Go see a dr 20 years later and he said i had the worst case of adhd hes ever seen and anyone who couldnt see that isnt fit to be a doctor.
Can it meet any demand thanks to our glorious leaders.
I have severe learning disabilities in my family that need daily care for the basics, who receive limited help
I’m sorry and sympathsies with the struggle, but when read comments from adults on here who can write whole sentences on their own, expecting any assistance at all post diagnosis for mild autism, i have to wonder what planet they are living on that they expect this from the current system
I’m not saying that NHS shouldn’t be providing these services. But clearly the current system is over capacity for severe cases, and mild cases aer simply going to be kicked into the 2030s
The issue is also that trauma can trigger autism/ADHD symptoms which should be explored before any proper assessment.
Another thing about diagnosis like autism or ADHD is that it doesn’t change how people see or act towards you and if they do its usually less than.
Demand for what? What can the NHS do about it? If there’s a problem, it’s up to other places like schools to accommodate it’s students with ADHD/autism, for workplaces to be more tolerant etc. All the NHS can do is diagnose it and suggest how to adapt to it, it’s not their job to fix it.
No shit. I’ve had to pay a couple thousand pounds to get diagnosed and treated privately for ADHD. The alternative was waiting two years to be seen by the NHS. It was well worth the money, but it’s a disgrace that mental health has become a luxury for those with some disposable income.
Yep and I’m still told I’m at least two years on the waiting list till I can be assessed.
Even though I have been diagnosed as a child with ADHD, Dyspraxia, speech disorder etc but my diagnosis now is to seek medication.
Everyone will have ADHD and Autism soon. Most people just can’t be arsed handling life so it’s easier to get diagnosed and live for free forever with no responsibility
I was on a waiting list for 2 1/2 years for my diagnosis. When I eventually got an appointment in 2019, I went to a “specialist centre” for it. I was expecting it to be heaving; after all, they had such high demand that the specific time slot they gave me was the first available in 2 years, right? If I couldn’t make that slot I was told it would possibly be another year until another one opened up.
It was completely deserted. The car park was empty, and there were no other patients in there when I arrived, when I left, or, as far as I could tell, in any of the rooms. As far as I could saw, there was one examiner and two assistants, which was all the staff in the entire building.
Let me reiterate that this was a **specialist** facility. A place that did nothing other than Autism and ADHD stuff for the whole city. As far as I can tell from my experience, the inability to meet demand is because the allocated resources are literally pitiful. If funding for even one extra doctor was allocated, that facility could double the number of patients it could examine.
No shit. My kid was put on an assessment list when she was 4, she’s nearly 9. Not a peep past reassurances it’s coming.
Nobody has even met my kid yet for anything really.
NHS unfortunately never been Tory priority. You can’t make money from free healthcare. Because of guía, they can’t safely meet demand across healthcare. Blame the people in charge of yes man Rishi and Co
You’re telling me. I’ve been waiting 3 years for my assessment and to go private will cost thousands
I think it’s because we’re not getting to why many people are being diagnosed with autism. Treating the symptoms is only one side of the coin.
My psychiatrist said she’s getting between 7 – 10 private referrals for ADHD and autism every day. It took me 3 months just to get an initial appointment privately, can’t imagine what that would be like on the NHS.
I’ve only just got back on my meds back after 3 and a half months of shortage. Fortunately I’ve discovered Lions Main is a pretty good substitute
I would like to point out that we also now live in a world where psychological research and awareness is ever evolving and getting better at diagnosing neurodiverse people.
My bug bear is people saying it’s a bad thing that people are now getting support and treatment based on the lack of support they received. My life would have been vastly different, had I of been diagnosed sooner and received the level of support I’m now able to access.
For most that had supportive and loving environments to grow up in dispite their neurodiversity, they tend to develop coping mechanisms and strategies, good habits, as they get older.
For those that didn’t have that environment in early development, you don’t learn the coping, you don’t develop strategies, you feel like a burden, you struggle day in day out, and after fighting to get the help, the help is over stretched, underfunded and misunderstood.
It’s in the name, and each person who is diagnosed as neurodiverse, is as diverse as the next one, so tired of people taring everything with the one ol’brush.
Nothing in life is a one size fits all, flexibility, understanding, open and candid communication, no judgement are in my opinion the only way to move forward. Not a singular one person is any less human than the person next to them despite any difference, we all just exist as a singular species floating on a rock in space.
As a species we are as diverse in the universe as our minds are from on another’s. Be kind, celebrate diversity.
Been on the ADHD assessment waiting list for 2 years 🥳 let me just find £1,000 up my arse to go privately. I’m almost certain I’ve got it (as are my healthcare worker parents). Only reason I care is so my employer has to give me reasonable adjustments at work 😁
I was waiting from September 2015 until December 2023 for my ADHD assessment. I had a doctor’s appointment and was put on the list in my first month at university.
In that time at uni, I had to repeat 2 years, still failed and only got a DipHE, almost killed myself twice, was bounced all over the place looking for a diagnosis that /definitely/ wasn’t adhd I was just sad and anxious and just a silly little girl, moved away and isolated myself during lockdown, enjoyed creative but ultimately 0 pay jobs, and now I’ve ended up in a dead end no progression job that’s bearly over minimum wage, which I was struggling with because it’s an open plan office with high stress and no routine. Oh and I’m fat now because I’m binge eating.
Thankfully in December, I finally got my appointment, my diagnosis (combined type ADHD with autistic traits) and it’s been great, got prescribed medication and told to seek out some therapy, ADHD work and life coaching. If my ADHD assessment was like a COVID test it would be two thick dark lines the second it came into contact with my brain juice.
All was good until the medication shortages.
Important notes:
– please search NHS right to choose so you can access the treatment you need. It the NHS the same to use a private hospital as it would an NHS hospital. The wait lists, while long, are shorter than the current NHS wait lists.
– please don’t forget that talking therapies are probably a necessary part of ADHD treatment, along with coaching which can be paid for by the Access to Work scheme (you need to be in a job), or just basic calls with Able Futures.
– if you are given the option of ADHD medications, they’re all really different and it takes time to titrate so please don’t give up hope.
Chiming it to say it’s not only not meeting demands, but has actively reduced its capacity for ADHD diagnosis and help in a significant manner.
The handling of the medication shortage and ongoing help for ADHD these past years has been awful, and if it was any other sort of condition it would have been condemned, yet here with ADHD die to it’s incorrect view in society it’s been ignored.
People have died without the medication, and many more continue to without diagnosis. It’s fucking saddening to a degree I can’t express, especially as it’s personally effected myself and my loved ones.
I wonder why that is…
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8592297/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5849631/
> Our study highlighted a significant association between the daily hours spent on devices and having an SCQ score above 15, which suggests a deficit in social skill development and having autism spectrum disorder-like symptoms.
Yay for likely having a bit of both lol! Partner is having to go private (thankfully we’re in a position to afford it) on an ADHD diagnosis, as NHS would be about 6 years (and have heard worse). So many people coming to realise that they’ve likely gone through life with one, the other, or both.
It’s not just ADHD and Autism. I have been told by two healthcare professionals I have symptoms of OCD but they can’t diagnose me and I had to be referred. It’s impossible, and I mean impossible to access a diagnostic assessment for these kind of MH issues. I’ve gone round in circles, and they make you do the same stupid assessment on the phone (which isn’t the actual assessment) and then will phone you back once when you can’t pick up and call it a day. No waiting list referral or anything.
Perhaps if so many people have it, we could drop the label and instead embrace the fact that all humans are different and try to change society rather than dampen them with drugs?
At this point it would be easier to just list the things that the NHS *can* meet demand for, because care is basically non-existent for things like gender, autism, ADHD, mental health, etc……
2.5 years waiting list in Derbyshire? Must be nice to be seen so quickly. I expect to be waiting at least 4 years.