https://www.bbc.co.uk/news/articles/cdew81wd2y8o
Warning: unsettling especially for those late diagnosed.
https://www.bbc.co.uk/news/articles/cdew81wd2y8o
Warning: unsettling especially for those late diagnosed.
My concern with this article was that different prices are paid for private assessments via right to choose, but knee and hip replacements privately are an agreed price. This means that there is less money left for support. If only the NHS were able to employ more assessors it would save money.
My thinking was to have more than one person involved in the initial process, too many patients are dismissed because they talk too well or seem to cope. A diagnosis is a long process yet someone can be dismissed at the whim of one GP. A discussion with people trained in mental health would be a good idea.
I've seen so many posts where someone can’t get access to an adult autism assessment because their postcode has no facilities or funding, that can’t be right.
I can imagine some GP,s do steer people away from Right to choose as it does come out of their budget
My NHS assessment was a whole day with two specialists present. It wasn’t a large unit, they can obviously assess 5 patients per week, that’s a trained autism specialist, a speech therapist and a senior psychiatrist. to keep up with the current workload they would need to have a massive expansion of facilities, I waited for 3 years for my appointment.
My wife is a District Nurse, every job she sees advertised is open only to existing NHS staff, she has just moved from one trust to another, her old job is still vacant, more people retire or leave, it just creates more job vacancies as they are basically just moving the same staff around so the budget doesn’t increase.
Do you think it would be better or worse if they had a separate starting point for physical and mental health? So you make an appointment at the GP for physical ailments, but someone else for the head stuff.
In an ideal world then, this other standard MH appointment would be 20 minutes+ at least, as it's often hard to have a difficult conversation and open up when you are so time pushed, and they'd have more staff to deal with it.
Obviously even though it should help GPs, there would never be funding, but I do think all the private care they have to use, does use up budget, and if they actually funded the NHS and had more people trained in mental health, the country would be better off for it. (And stop the guessing game for people having to choose their own provider and balance wait lists of each company Vs reputation for care/after care). I know it's a bit of dream that everyone gets equal care.
One problem though is I know they aren't entirely separate issues, and mental health can have physical symptoms, so don't know if it would be better or worse, but good to consider what a functional system might look like and not just a patched up one!
Oh and thanks for the article links phased, I do agree with you and saw they even link the split in the spectrum article right in the middle of the one about funding. And not once does the article actually talk about people, only the buzz words to get the audience to think negatively about assessments without seeing the positive affirmation they can bring.
In the original tv series Quantum Leap, Sam was always trying to get home, just when he thought he was finally going home, he would leap into another situation. It’s that feeling of finally coming home, wandering in the dark and finding your tribe. It was as if they were always there but I just couldn’t see them.
It’s very interesting reading, my view is how the first point of contact happens needs to change. The GP has total autonomy, how you are treated is based on their personal views of autism or ADHD not medical science.
Maybe regular courses on understanding autism and best practice would help, unfortunately people have their personal views, but these shouldn’t come into the workplace.
An older GP is likely to have less understanding of autism or ADHD, some refuse to even acknowledge it exists.
If I went to a GP and told them I had a severe headache, I would expect an answer of “no you haven’t.” I have several family members who work in the NHS, one is very high up in adult safeguarding, their views totally invalidate “ all this so called autism and ADHD”.
i do wonder if some of the private providers are giving value for money, maybe a cap should be introduced on assessments. For them it is purely business, a gap in the market is identified and the expected profit is calculated. These companies seem to appear, diesel emissions, mis-sold finance and so on. Maybe tightening up on qualifications would help give better care.
The ombudsman’s report is common sense, the whole service is still too much of a postcode lottery.
Also whilst I’m ‘standing on my soap box’, the only having ‘Right to Choose’ in England needs to stop, it should cover the whole of the UK.
This has just made me question something in my own family history. I had a great uncle who was in an institution his whole life and I've never known any details of why. I've always been afraid of upsetting people by asking. But now I know I have autism, I wonder if he had it too..
In my case, it took someone I know and trust to gently and bravely suggest I might want to consider that I might be autistic and to think about getting formally assessed. (I'd never even used the word when we'd ever spoken). She even took the time to reach out via email out of the blue to do so, having been thinking about it and she could see I needed answers. Somehow that suggestion allowed my long-standing inkling (while feeling I must be wrong) to find a tipping point into finally allowing myself to tentatively articulate my suspicion -initially to a GP, then claim (after proper diagnosis) my full identity, and make sense of my life for the first time. Bookends of external validation (her suggestion, then my seeking and getting answers) so to speak - I wonder if I'd have struggled on, suffering more and more, had that first kindness now been done (how can I ever thank her enough for that?), I dread to think.
It saddens me to think of someone maybe needing that same encouragement, then hearing Uta's take on the situation and struggling on in silence, denied the missing puzzle piece they so desperately need because they felt shamed to have even raised the question inside their own mind never mind speak it aloud and seek the beginnings of help, support, understanding.
More important than identity is for me belonging and support in social interactions.
Is helping someone accept themselves something bad? Isn't it part of a medical purpose?
I would say it is the prime purpose of therapists. Low self esteem is an awful thing, and often pushed upon people who themsevles have low self esteem to make themselves feel better. I've had so-called 'friends' making 'jokes' about my weight until I got wise and ditched these fiends.
So what I can do with the identity "inferior to others"?
Say to yourself that the problem lies with them, not you [for the above reason]. Then dust yourself off, and start afresh, doing things and being around people who make you feel better about yourself. They will become your truest friends.
Identity is part if us and our lives. Critics say, it's just an identity diagnosis. Then people ask me, why I have such a low self esteem. It's because my life proved to me many times, that im inferior to others. So what I can do with the identity "inferior to others"? - many just sit down and refuse to work on themselves or anything, because they know, that they ate inferior and designed to fail. But if the identity changes, for many people it's an inpuls to understand themselves better, be more compassionate with themselves, start working on changes to ballance what they are expected and what they can do. As Paul Michalleff said "meet me halfway". Is helping someone accept themselves something bad? Isn't it part of a medical purpose?
Yes, this is the nub of it - an identity.
Not so much an identity for me but more the solution to a puzzle and a blueprint to move forward.
My answer is validation, finally understanding why I’m like I am and it answers why my life has been such utter chaos.
Yes, this is the nub of it - an identity.
Only my opinion and here comes the but, only autistic people can truly understand autism, unless you experience it and live with it on a daily basis daily, you can’t fully comprehend it. We had to learn how to seem normal, we observed, made mental notes and even rehearsed when on our own with no guidance.
Experts only know what we have allowed them to see and try to explain, that’s when we are able and feel actually safe enough to do so.
The growing bigotry against autism comes down to cost, the fear is that more people with a disability equals tax payer cost, most of us go out into the world everyday and try out best and ask for nothing. Those who can’t manage without help should be helped financially and with support.
I spent over three years waiting for a diagnosis, a positive diagnosis isn’t just handed out, it’s very invasive. if a doctor asks what I hoped to achieve from an assessment ? My answer is validation, finally understanding why I’m like I am and it answers why my life has been such utter chaos.
Even after diagnosis or self identification, we carry on going through hell as all the lost years and catastrophes start being processed, I still buy myself very little, my wife will sometimes ask if I would like something, I always reply no. Secretly I still believe I’m a bad person who should be punished and deserves nothing. Does this sound like someone who wants a trendy ‘label’? On bad days I still shut myself away as I don’t want people to experience my autism. I’ve found the most used word from autistic people is sorry, I personally find I’m always apologetic for something that’s not really my fault, and guess what? I don’t look autistic!
There are definitions in the diagnostic manuals, such as 'autism with intellectual disability'. The ICD-11 describes around 300 different presentations of Autism Spectrum Disorder (ASD). This is a recognition that autism comes in many different varieties. Are all these varieties the result of the same genetic or environmental causes? Are these varieties caused by a sliding scale of autism severity, or are they caused by overlapping co-occurring conditions?
My point is, does 'profound autism' exist as an entity in and of itself? For example, Is the causation of not being able to speak directly linked to autistic features or is it independent? A person who cannot speak, but is gregarious and happily engages with other people will not get an autism diagnosis, what then is the cause of their inability to speak? It is apparently not autism.
I had an uncle who was profoundly autistic. Unfortunately for him he was born in to a family of 11 in the 1940s so he was put in an institution and spent his entire life in institutions, half of it in a horrible Victorian place where as a child I would visit him with my mother. He did not make eye contact, had facial ticks,wrung his hands and rocked on his feet all of which were very confusing for me as a child. He loved jellies and comic books like the Beano. Visits were a case of my mother asking a few questions with yes no answers followed by watching him eat jellies and read his comics
There was one thing I remembered that now makes me smile he would come across certain words where he would ask what is this word and he would slowly read out the letters of the word. My mother would say that is "building" or whatever the word was and he would happily carry on reading. There were a few occasions where my mother was not paying attention or maybe misheard him and would say the wrong word at which point he would make uncharacteristic eye contact and say in a condescending tone"no it doesn't, it's" whatever the word was. He knew what the words were, he was testing us 
It was an insight in to what was behind who he was inside.
Yes, people can be highly intelligent but severely disabled by profound autism. It's a bit unfair to dismiss them.
I was thinking of 'inside autistic minds' programme, and Ken Bruce son has profound autism, but with great difficultly had written a very thought provoking piece of writing, even though he couldn't talk and barely type.
"Through his short film on the program, Murray aimed to show that a lack of spoken speech does not mean a lack of intelligence or a desire to connect with the world."
In my opinion the term 'profoundly autistic' is a misnomer for people who are autistic but also have severe co-occurring conditions.
Is it not the case that autism alone can be severely disabling?
I'm so sorry you had that experience of dealing with a dismissive doctor as a direct result of Frith's comments about late diagnosis. It's really impressive that you managed to keep composed to dispute it, that would have broken me!
Did you manage to get the right to choose? I hope you can eventually manage to get seen.
