Experience of first autism assessment, felt like a benefit assessment.
Comments
-
A summary of what we think happened is below.
From the start the assessor was caught up on that I wasnt referred via adult social care, and was done via GP. He never really let this go through the entire hour.
Most of the assessment was him asking me why I think adult social care, my school, and my parents didnt raise the issue. (bear in mind as well I was at school in 80s and 90s).
There was no talk about symptoms from him, this only happened when me and my sister brought it up and he changed subject.
When my sister gave him some evidence she had, he told her if she cant provide evidence he cant take it into account. Then said "interesting" when she said she had no evidence to hand.
He initially told me I should be having a ADHD assessment, when I said I have Autistic symptoms, he said it sounds more like ADHD but wouldnt explain his reasoning.
Later on he moved to depression, when my sister asked him to explain what is leading him to that, and how it would explain my childhood behaviour he stopped engaging with her and asked her to leave.
After she left is when I was asked why I wanted an autism diagnosis.
Even if I have another assessment and it goes better, I dont want another person to go through this with him, which is why I think a personal complaint needs to go in. I have never been spoke to like this before.2 -
I suspect my mum is autistic, but of course not diagnosed.
1 -
Part of an Autism diagnosis is about ruling out other conditions, such as ADHD and anxiety/depression. They also need to see evidence that it was present from birth, which is why they try to get parents to talk about milestones and early development before reaching an age where we mask to fit in. These topics are reasonable during a diagnosis discussion, but it sounds like this particular assessor went about it in completely the wrong way. I wonder whether they are very new to the job.
1 -
ADHD is quite different to Autism though, and the assessor had no interest in the symptoms.
I am curious what this black mark system is, and why the NHS is allowed to black mark people.0 -
There are differences between ADHD and Autism, but some of the major traits also fit both conditions, known as 'overlap'. It is normal to consider ADHD during a modern Autism assessment.
There isn't an official black mark system for the NHS. They will tell you it's all confidential if you ask. But some people do find they get treated differently after making a complaint.
2 -
They are different but there are many overlaps, especially ensory sensitivity, executive functioning difficulties, emotional regulation, social struggles, hyperfocus, and feeling overwhelmed by everyday tasks.
1 -
It is. Autism encompasses ADHD but not the other way around.
My assessment was 10 years ago and I've only recently considered the other condition because it's secondary to my autism and probably is for you.
I want to correct something I wrote earlier - it took two years to get my diagnosis (not two for the second referral) which included 4 months too afraid to chase it up because of my first experience. The assessor had forgotten to send his report to my GP but that didn't matter once I'd read it!
Mine was in person and it definitely helped knowing who I was talking to - he saw things that would have been missed in a video chat. He was extremely calm, gentle and in no hurry for answers to his questions. You need the correct assessment by the right person (there is no way a newly qualified person would bully someone like that).
It is baffling that nobody picked up our difficulties/impairments but it really is the missing part of a puzzle. It was shocking to realise I'd not been able to make myself understood all those years despite being articulate, as you clearly are.
Your sisters believe you and will battle to get you this diagnosis. Your GP needs to know what happened and why you need a new referral 🕊️
2 -
The most apparent symptoms for autism on that which apply to me are not listed on the ADHD page, if those pages are inaccurate the NHS need to correct them. (the symptoms also applied during my childhood)
I cant help it if the NHS assessment process is flawed and they have assessors bullying people, but I will fight for this. I also dont think its right that people who complain are mistreated.
On the next assessment if I am asked inappropriate questions my sister will tell the assessor we are declining to answer, and also I am only to answer if she tells me to, otherwise she will answer for me, and also will end the assessment if it becomes unprofessional again with a new one expected without a new referral, as I cant play down the referral part of this as if its no issue to do it all again, it was an extraordinary amount of effort required to get referred.0 -
This is from the NHS - 'Signs of autism'
Page last reviewed: 11 November 2022
Next review due: 11 November 2025
I didn't consult these pages at any point and you're right about them being not very informative. The National Autistic Society is where most of my guides came from.
Have you contacted the NAS for support?
0 -
No but thank you for the suggestion. I cant find a contact support number there, but have joined the community. I have read how they describe autism, and its like they are drawing me. Its a perfect portrayal.
There is another update.
My discharge is now official, and they diagnosed depression, they stated the way I acted during the session as their justification.
The assessor seems to have confused a formal assessment as a socialising environment.
There is no report attached, just the vague summary.
Thank you a lot WhatThe, all of your posts, make me feel you feel my emotions, and you are clearly fully supportive of the position I am in, your experience will drive me on.2 -
Great to hear and thank you for saying so!
What a shame their helpline is now closed. You can request leaflets from them free of charge if you prefer hard copies of information.
I can relate to what you've said - I didn't know what my daughter was talking about until I read something, a year or so later, in a book she had given me. Those random, unlikely characteristics, physical features and behaviours described me and my life! I didn't 'meet' any autistic people until I joined this forum nearly 3 years ago and heard similar stories.
What motivated me to pursue my diagnosis was knowing that if they couldn't recognise autism in me - with all my evidence - what chance would anyone else have? That's how sure I was.
I would suggest getting hold of your NHS data from your GP. Mine revealed that notes about my childhood surgeries had been destroyed by another hospital.
Your GP will know who the provider was and you definitely don't want them again.
2 -
Ps practice managers have to reject a certain numbers of referral requests each week so don't give up asking. The NHS measures success by the number of patients it discharges. That's what you're up against!
2 -
So a complaint was done via PALS and I have an advocate.
They have already told me over phone they will do a new assessment with someone else no new referral needed and will speak to the assessor.
However as I got nothing in writing the complaint has been left open.2 -
That's good news @worried33. Hopefully they'll get a new assessment booked in with you soon.
0 -
Its going to be around September as I am back of waiting list again.
0 -
Complaining can very much put a black mark against the complainant, but I would hope that that doesn't happen in this context.
I've been deemed as "Unreasonable" by the mayor of West Yorkshire because I complained about their handling of a police complaint. Under their "Unreasonable Behaviour" policy, everything I send to the authority is diverted to the person that I complained about...
0 -
I now have written confirmation.
0 -
They don't like people complaining about them, there's a simple solution to that, don't give us cause to complain in the flippin' first place.
0 -
Is that for your new assessment @worried33?
0 -
Yes they have confirmed I will have a new one soon.
0
Categories
- All Categories
- 16.3K Start here and say hello!
- 7.7K Coffee lounge
- 120 Games den
- 1.8K People power
- 185 Announcements and information
- 25.7K Talk about life
- 6.2K Everyday life
- 425 Current affairs
- 2.5K Families and carers
- 889 Education and skills
- 2K Work
- 611 Money and bills
- 3.8K Housing and independent living
- 1.2K Transport and travel
- 675 Relationships
- 1.6K Mental health and wellbeing
- 2.6K Talk about your impairment
- 883 Rare, invisible, & undiagnosed conditions
- 945 Neurological impairments and pain
- 2.3K Cerebral Palsy Network
- 1.3K Autism and neurodiversity
- 41.5K Talk about your benefits
- 6.2K Employment & Support Allowance (ESA)
- 20.5K PIP, DLA, ADP & AA
- 9.4K Universal Credit (UC)
- 5.4K Benefits and income