Published on 12, July, 2020
Hello everyone, this is my first post. I am hoping for your advice and opinions in relation to my current role.
For background I am a 40 something year old man, diagnosed with autism in childhood in the 1980s and re-diagnosed in my late 30s when a NHS neurodevelopmental clinic I worked for didn't believe I had the condition.
I have worked in health since my mid teens and have always supported and advocated for neurodivergent people. I have published on the subject and spoken nationally for a range of organisations including the Royal College of Nursing (RCN).
Prior to working in an ASD assesment service I always strongly advocated for assessment and identification.
However, I now feel deeply concerned at what I have discovered through becoming more familiar with the assessment process, particularly in the private and independent sector.
I have been completing ADIRs. This is one half of the 'gold standard' used for ASD assessment. This is the parent interview. What I have discovered is it isn't fit for purpose and everyone who completes this assessment knows this.
First of all the language is dreadful and is about as far away from neuro affirmative as you can find. It's a test designed by neurotypicals to administer to other neurotypicals to develop a neurotypical view of an autistic person. What's worse is it doesn't assess the condition properly.
The ADIR works really hard to identify parts of the condition which are no longer in the diagnostic criteria and misses out other symptoms.
We were trained by an American and their rate of diagnosis is double our national average. We are then being trained to be even more liberal with the questions under the guise of complex and subtle and I imagine our diagnosis rate has to be higher than the Americans. Many of the referrals wouldn't get into the NHS clinics I previously worked in and as people are developing their own questions I often hear things which are not ASD being framed as ASD.
The result of all this is I believe we are having children and young people diagnosed with ASD who probably wouldn't receive this diagnosis within more robust services. There is a gravy train of private services each charging more than 2k a time per diagnosis and it appears there is an incentive to give the diagnosis. Not financial, but in terms of being a business wanting positive reviews and to follow the request of their customers. What is the long term effects of this?
There must be a better way of doing this? I don't know the answer but think neuroimaging has a role. A computer scientist in Southampton is able to predict ASD within a 90 something percent accuracy through brain imaging whilst young people play specific computer games. Whilst I think it would be a shame to remove the story and talking and this needs to be incorporated in my opinion. It's a little way from being able to be implemented widely but the idea is a cap, piece of software and laptop will be all that is required.
The current standpoint of policy and guidance makers to rule out anything but their outdated 'gold standards' and the domination of neurotypicals 'doing' services to people on the spectrum needs to stop in my opinion.
I think the experts by experience consulted are lip service and would like to see more people on the spectrum with clinical experience leading within the field. I don't know how we do this. I am part of the National Neurodiverse Nurses Network but we have quite a wide remit and I am not sure this is the way forward in regards to this issue.
Sorry for this massive monologue. Like many of you I see things in a.lot of detail.
NAS83686 said:I have been completing ADIRs. This is one half of the 'gold standard' used for ASD assessment. This is the parent interview. What I have discovered is it isn't fit for purpose and everyone who completes this assessment knows this.
What is the 'gold standard' considered generally then?
You talk here about children and young people, but surely this applies to all the population of any age?
NAS83686 said:However, I now feel deeply concerned at what I have discovered through becoming more familiar with the assessment process, particularly in the private and independent sector.
I was diagnosed within the NHS (at 60) but the work was 'farmed' out to a company called 'Solutions4Diagnostics'.
There was no input from parents who are both deceased although I have a good memory of my young childhood.
These are the forms I was asked to complete prior to my verbal assessment:
The assessment consisted of:
RAADS (RITVO Autism Asperger Diagnostic Scale - Revised)
Autism Spectrum Rating Scale
Mental State Examination
Beck Anxiety Inventory
Beck Depression Inventory
Developmental History
I then had 2 one hour conversations online with Harley Street based Consultant psychiatrists.
Am I able to have faith that my diagnosis is likely to be correct?
I am a little confused by this thread and it is very dense with words, which I find rather difficult to follow.
I have also read on this forum about a type of assessment where people are asked to give a story about an object or a book and I didn't have that included in my assessment.
Are there therefore different types of assessment and are they all as valid as each other?
Anyone with any knowledge here please advise.
Thanks.
Here is the short NAS summary of the different types of assessment:
There are a number of tools which are used to diagnose individuals who might be autistic. These include the DISCO (Diagnostic Interview for Social and Communication Disorders); the ADOS (Autism Diagnostic Observation Schedule); the ADI-R (Autism Diagnostic Interview – Revised) and 3Di (Developmental, Dimensional and Diagnostic Interview).
https://www.autism.org.uk/advice-and-guidance/topics/diagnosis/diagnostic-tools
And the link by way of the previous link for the longer NAS summaries:
https://www.autism.org.uk/advice-and-guidance/topics/diagnosis/diagnostic-tools/all-audiences
Which oddly enough does not include the summary of the Developmental, Dimensional and Diagnostic Interview (3Di) ~ but a link to one summary is:
http://ixdx.org/3di-index.html
As for which assessment is considered the most valid or whether they are equally as good ~ all I know for sure is the Lorna Wing Centre for Autism uses the DISCO framework to assess pre-adolescents, adolescents and adults ~ being that I know a few people who have been assessed there, and one who wants to be assessed there.
I had just assumed that they are all just different versions of the same sort of thing ~ as involving the American Diagnostic Statistics Manual and or the International Classification of Diseases manual to different extents, so it could involve a post-code-lottery state of affairs, quite possibly?
The Nice guidelines state that the minimum for a valid adult autism diagnosis is the opinion of a single suitably qualified clinician.
"Diagnostic assessment, which in the UK uses ICD-10, is often within a multi-disciplinary team but at a minimum is by a qualified clinician, usually a clinical psychologist, psychiatrist or neurologist." From the document: Autism Recognition, referral, diagnosis and management of adults on the autism spectrum, National Clinical Guideline Number 142, p. 25.
Most NHS adult autism assessment is undertaken by teams of clinicians and the testing and interviewing is over a relatively long time. Whether this is necessary for adults, or is the major factor in the perniciously long waiting times for assessment, is moot.