DSM-V - Diagnosed But Would Now Not Be

Firstly, I think the diagnosis criteria has changed over the years based on clinicians experience even though the diagnosis manual hasn't changed for decades (DSM-4 was published in 1952). Perhaps it is related to awareness of autism? It used to be the case that usually only the most extreme cases are noticed and diagnosed, even though the manual does have Aspergers.

Secondly, yes, it still could go the other way, such that there could be people who would have been diagnosed but now would not be. There used to be a category call PDD-NOS, some of which may show symptoms more closely resemble those of autism spectrum disorder, but do not fully meet all its diagnostic signs and symptoms. This is now removed in DSM-5. Furthermore, field test have indicated that some people who would have received an autism diagnosis under DSM-5 would now receive a diagnosis of social communication disorder (SCD).
https://www.autismspeaks.org/expert-opinion/what-social-communication-disorder-how-it-treated

Mine used the DSM-5 but then referred to the ICD10 code in the letter back to my GP.  Either way, I still got the impression it was highly subjective.  Some of this was offset by being seen by several different professionals for each stage of the assessment, plus my case then going to a team meeting for discussion before the final decision.  But, in the absence of any blood test, I don't think the subjective element can be ruled out.  

That being the case, I'd probably still have chosen to identify as autistic, irrespective of what they told me.  Either that or gone for a second opinion.

Sorry about the smellings, my fingers are two big for my tablet and the wrong letter appears!

I also have more empathy than I know what to do with! I'm rubbish at feelings though, I am so sensative to other people's feelings but don't know what to do with it!

That's good to hear. I think I just need to have the diagnosis and not keep questioning myself in the build up to it. I know I have enough symptoms to warrant a diagnosis; challenges in terms of 1:1 communication - unable to make small talk, staring when trying to make eye contact and not knowing where to look on a person's face, no facial expressions or interest in my voice when I speak; all very flat, trying to end a conversation asap, trying to turn a conversation towards my interest and then getting too loud and passionate and going off on one about my interest; terrible anxiety especially supermarkets and restaurants; obsessive interest in birding, ("twitching") and collecting things; sensory issues with touch; dry soil on hands, unable to wear rings/watches; constant stimming activities, both physical and mental (e.g.drawing eights and ampersands and erasing them in my mind if wrong). These are just a few of my traits and yet I still doubt myself because: I can read faces, I have empathy, (too much at times - I'm over emotional), I understand where to appropriately stand in conversation; I don't get sensory pain; yes I have to leave a room if it's noisy and prefer natural light to neon especially meetings at work in winter, but actual pain I certainly don't get pain in the true sense of the word. I don't know. We'll see.......

I don't think you should take this too literally.

Limiting you can cover all sorts of problems.  There are two models of disability, the social model and the medical l model.  And e medical model is being replaced in many oeganisations involved with disability, including the EU and the UN.

Mist autistic people are socially disabled but not medically.  And thus hasnt changed one bit.  We have daily social misunderstandings, delayed comprehension, fixed ways, sensory overload.  The reason many of us havent realised we are autistic until later life is that we have always been that way and adapted to accept it.  But these things then manifest themselves in mental issues such as anxiety, depression and stress and withdrawal. 

I have no doubt that if you have been assessed under the old criteria you would be under the new.

For me it has seemed to go in the opposite direction.  I don't think I would have been diagnosed in previous decades but now, in my 6th decade of life, I have been.  And under the DSM 5 criteria.

I'm also not sure what my sons chances of being diagnosed earlier on might have been.  Diagnosis rates seemed to take off in the 1990s which coincided with their early childhoods but I'm not sure exactly when in the 90s the change took place or whether it caries by region, locality, even by school.  

Plus, of course, the DSM is revised every few years and so, whereas once I might have been diagnosed with Asperger's, I've now attracted the label of ASD, although I'm clearly the same person with the same strengths and limitations in life.

It's confusing, but it's a confusion inherent in the diagnostic system so I tend to put it back onto services and ask them.  Apparently (and this relates to last October for me and earlier this year for one of my sons), it's the DSM criteria that are being used.  Two different teams were quite clear about that.

They also seem to pare it down to just 3 criteria , being

- qualitative difficulties in social communication and reciprocal social interactions

- qualitative difficulties in social imagination and restricted, repetitive and stereotyped behaviours and interests

- sensory difficulties which are being increasingly recognised as central to autism

No mention was made of these imposing daily limitations, but given the very general and nearly all encompassing nature of these categories, it seems to me that this is implied.  After all, to most people I think that communication and interaction would be considered to be daily matters.  

So I would say it's definitely worth proceeding.  I'm coming across lots of people who previously wouldn't have been diagnosed but now are.  I'm not, of course, saying it doesn't sometimes go in the other direction, but my experience has been that it's increasingly likely to be diagnosed.

It's good that it got picked up, alot of people on this site have said that they were also receiving treatment for other issues when autism was suggested. 

Is the person you saw referring you for assessment? 

sorry not by autism by undiagnosed autism

You mention MH this was raised in treatment for cPTSD, therapist suggested the trauma could have been caused by autism. I took the Aq test 45/50, was shocked by that. I haven’t tried the Eq yet.

Alot of people are being diagnosed later, due in part to more understanding of autism. Where previously people would have been diagnosed with other mental health problems. 

As for looking into autism for you, have you taken any of the online tests such as the eq or aq? This might give you an indication of whether you are on the spectrum. 

Hi, i don’t know if this adds to the discussion. I’m just starting the journey to diagnosis. I didn’t understand what autism was before a health practitioner raised it with me. I don’t know if I am autistic yet but I have faced a lot of daily struggles that I didn’t have an explanation for, at the time I didn’t know they were symptoms of autism. Perhaps that’s just my nativity though.

Hi, 

Don't most NHS places use the icd10?  

But yes people have been diagnosed not autistic but continue to identify as autistic because they feel the diagnosis is wrong, alot of places fail miserably with the quality of assessment and as such people slip through, some go on to be re-evaluated and do receive diagnosis some choose not to put themselves through the process again