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.
yeah if you go private for a diagnosis they wont tell the truth, they work on the assumption that you want to be diagnosed autistic and you will be offended if they find you arnt, they work on the basis that you are just paying for the diagnosis label and that is what you want and they are going to give you what you paid for and you will be a happy customer... .this is why i prefer official nhs diagnosis of it.. even if its harder, even if they will tell you the truth and come back negative on you and say sorry its nothing, or it could be something else.futhurmore they understand those going private for this have first gone to the nhs and they declined them, then they got upset and refused to take it not being asd then they went private instead to chase the positive diagnosis. so they will always give you what you paid for... i bet i can be diagnosed as having rabies if i went private and told them i got upset that the nhs told me i dont have rabies...
The NHS provision in my area has been closed down due to being put into special measures more than once. People go private because they want to be seen more quickly. Would you go for private cancer screening because you wanted to be told you had cancer? I know these two are COMPLETELY different things but I'm being blunt to make a point.
Of course it isn't a mental disorder or disease but I wasn't separated from others yer I still have a diagnosis.
NAS83686
I wonder if some of the uptake in diagnoses is due to to people sharing information online. There's the official criteria for autism diagnosis and then there's other factors which are not accounted for in diagnostic criteria but they seem to be shared experiences within the autistic community. Some people may put things down to "being autistic" when it isn't in fact the case. But others see this in themselves and start wondering. However I think this sharing of information is massively helpful because the official guidance / criteria is made by neurotypical people for neurodivergent people.
I think there needs to be change within the criteria which is based on observable behaviours. I actually see it as internal because it's about processing. I think there are many differences within autism but also similarities with other neurodivergent conditions. It's a tricky one but I think autistic people need to be included more in reseach both participating and carrying out. I hope I've made sense my brain is fried right now!
You make a lot sense. I think in the absence of a safe and effective NHS service you have to look elsewhere. However, there is something called right to choose which isn't widely advertised. Basically you have the right to select a provider outside of your area as long as they hold a NHS contract somewhere. This remains free at the point of delivery.
I think it's good that there is more information online. I haven't experienced anyone faking it.in the last twenty years. Some people have convinced themselves through this information and then get upset if they don't have the condition in the opinion of the assessment. This can be really difficult for people.
In terms of observation the ADOS does this to an extent. It is very staged though so l imagine by observed you might mean in the person's natural environment?
We are both on the same page re. processing and this can be seen on a eeg scan. I think there are plenty of people studying us and people with ASD need a.way of leading more research.
This is reflected in the kieran rose video on masking and burnout. The fact we are modifying our communication to neurotypical standards can contribute to burnout I think, because so much energy is expended. And this extra work isn't recognised by anyone and for some can have very little or no reward.
It's this idea of processing which is getting me moved away from a behavioural model of deficits. Altho I have never seen myself as deficient, just different. But that in itself can massively affect mental health.