A question I would ask is do you take possession of the label or labels for yourself or should it just be down to a professional's opinion as to whether the label(s) fit(s) ? If the latter it very much depends on whether you are lucky enough to come under the radar re fitting criteria or not. The truth is many people's symptoms go undiagnosed for years due to incompetencies and shortcomings within the system. It is not that these people are free from difficulties/problems rather than their problems have been missed/overlooked.
My diagnostic letter gives both DSM-5 and ICD-10 classifications. The letter also points out that the ICD-10 coding of Asperger syndrome is a better description of my strengths and difficulties, rather than DSM-5 which simply refers to the whole spectrum.
I would much rather have the more specific ICD-10 label than something as broad as DSM-5 which seems pretty pointless ("you may have very severe difficulties, or none at all, in a whole range of different areas of your life..."). Honestly, I know they mean well, but that's as much use as a chocolate teapot(!).
Asperger syndrome it is, then. The history airbrush artists can go whistle.
It's been the same as long as I can remember. I'm 61 now. First week of my first admission at 18 I was in line to make doll's houses for therapy. I had a bad anxiety attack because I knew I couldn't do that. My construction ability is very poor.I had to be dragged from in front of a hospital bus. Instead of anyone having the empathy and/or intelligence to explore the matter further I was seen by a pdoc who called me an "awkward and troublesome teenager ". A lot of the problem is the lack of intelligence to take a holistic approach ie consider the whole person. The thing is if they had done a proper initial assessment a lot of things might have been picked up that were missed.
'D' being dyspraxia, and N 'NVLD', I presume. That's funny in a way: they can't fully describe or understand the set of characteristics indicated by one label, so they come up with another. A multi-dimensional approach would probably be most in keeping with the complexities of the human mind, and with everyday language ('not very good with his hands', 'rather intense'), but discrete categories of 'disorder' has mostly been influenced by definable pathogens (or single genetic mutations) producing a set of symptoms and a prognosis.
Should we 'take possession' of the label? I suppose so, and we do this by using it in the real world, telling people, or accessing autism-specific support. The professionals do admit autism is somewhat subjective and can be subtle at particular stages in life. When I got my diagnosis, I thought that well, this is on my medical notes, but how much of a tool it is I use to understand myself is up to me. Given my low opinion of psychiatric practice generally, I had wondered about rejecting it as a misdiagnosis altogether, but it's been hearing the experience of other people who have stories to tell that I can relate to, for example how 'alexithymia' defies common sense, that's confirmed my identity as autistic. I should stop thinking that because X is an autistic characteristic, I might be very X and not realise it, because I may be unusually the opposite. And I don't necessarily accept it as lifelong as in the usual definition, despite being dogged by the same problems: some of it could be acquired, and some of it learning may change.
'Autism' collectively as I see it is really about appreciating differences in aptitudes, sensitivities and interests, and ensuring society still adapts to the individuality of the human being. All the researchers I've come across admit there are multiple 'causes' with very diverse 'presentations'. Check out the concept of the 'autistic constellation' - we're people who are just a bit out of the average and not on the usual wavelength in a whole variety of ways. However, because of what society currently requires of the individual, the range of labelled variation is biased towards the quieter, internally-focussed characteristics.
Although I am a bit geeky, I don't really identify with the male Asperger stereotype - I dress very casually, I like variety, I can say what I think tactfully and expressively, I'm flowing rather than stiff. So I probably reject that from my diagnosis, because it's missing the ways in which I do differ greatly, which are more subtle.
Rather than DSM-V or ICD-10, both of which are very limited, if we want something that will be helpful in self-understanding beyond saying we're different in a way different from how many different people are different, the 'diagnosis' would include a wide range of personality characteristics and aptitudes. RDOS 'Aspie test' and the learning disability and intelligence profile are only part of this - I'm thinking of at least 20 variables. I'm very intellectualising, very disorganised and spontaneous and bad at self-monitoring, as well as currently lacking much intimate contact or means of expression. If professionals had responses to each variation, in terms of lifestyle recommendations or services, the diagnosis would be much more helpful and followed by individualised counselling. Instead, at the moment, autistic people are told to socialise with each other, which is fine, and end up working out the constructive responses themselves. Thus researchers who want to understand the diversity of autism would do well to ask autistic people.
According to the PDF of the Aspie quiz
Neurodiverse talentThis group contains intellectually related neurodiverse traits. Typical traits are related to strong interests that can become obsessive (e.g. having strong interests; hyper focusing; collectinginformation; good long term memory related to interests; figuring out how things work; making connections between things). Other traits are related to information processing (e.g. noticingdetails; finding patterns; unusual imagination; unique ideas). Some people have special talents (e.g. numbers; language; computers; music).Diagnostic relationA high score is related to Asperger's Syndrom (AS) and Obsessive Compulsive Disorder (OCD).Your group score: 4.7 of 10 (average).
Neurotypical talentThis group contains intellectually related neurotypical traits. These are often defined in terms of disabilities. Typical traits are related to verbal communication, learning by imitation, stayingfocused even when doing boring things, trouble with finding places and a poor concept of time.Diagnostic relationA low score is related to Dyslexia and Dyscalculia, but also to other diagnoses like ADD/ADHD.Your group score: 1.9 of 10 (below average).
Neurodiverse perceptionThis group contains neurodiverse perception traits. These traits can become a disability by causing sensory overload and even a complete shutdown. The need for routines and predictabilityto a large extent seems to be caused by acute perception and the related risk of sensory overload. The core traits are hypersensitivity to touch, sound, smell, taste, strong light, humidity,wind, heat and electromagnetic fields. Some people are less sensitive to pain.Diagnostic relationNo direct, but autistic people often have differences in perception.Your group score: 5.8 of 10 (average).
Neurotypical perceptionThis group contains neurotypical perception traits. Typical traits are reading facial expressions, recognizing people and estimating age which involves the human face. Other traits arejudging distance, speed, acceleration, pressure and time.Diagnostic relationA low score is related to Dyspraxia.Your group score: 1.0 of 10 (below average).
Neurodiverse communicationThis group contains neurodiverse communication traits. Key traits in this group are related to atypical nonverbal communication (e.g. odd facial expressions; being accused of staring; usingunusual sounds in conversations; blinking or rolling eyes; clenching fists; grinding teeth; thrusting tongue; blushing). Related traits are stims (e.g. wringing hands; rubbing hands; twirlingfingers; rocking; tapping eyes; pressing eyes; fiddling with things; pacing; flapping hands; peeling skin flakes).Diagnostic relationNo direct, but a high score is related to stimming and unusual communication.Your group score: 2.4 of 10 (below average)
Neurotypical communicationThis group contains neurotypical communication traits. The key trait is the ability to interpret and show typical nonverbal communication (e.g. facial expressions; body language; courtship;prosody). The absence of these abilities lead to secondary problems (e.g. unaware of how to behave; unaware of boundaries; being misunderstood; missing hidden agendas; being unaware ofothers intentions; misinterpreting figures of speech, idioms and allegories; literal interpretation; not knowing when to apologize; saying inappropriate things; seemingly poor empathy).Diagnostic relationA low score is related to Autism Spectrum Conditions (ASC).Your group score: 3.2 of 10 (below average).
Neurodiverse relationshipsThis group contains neurodiverse relationship and attachment traits. The main trait is a strong attachment formed over a longer period of time that often can last for life even in the absence offurther contact. Related to the attachment is being protective, learning routines, walking behind and examining hair. Some people form multiple attachments (polyamory) while others formimaginary attachments in the absence of a suitable partner. Contact phase traits includes unusual sexual preferences and being more sexually attracted to strangers. Odd hair probably plays arole in recognition in the contact phase.Diagnostic relationA high score is related to "attachment disorders" and paraphilias.Your group score: 4.9 of 10 (average).
Neurotypical relationshipsThis group contains neurotypical relationship and attachment traits. Traits are related to the typical process of finding a partner, dating, courtship and sexual intimacy. The intimacy traitsdefines the norm in society and aim at creating and maintaining attachments with sex. People that dislike this norm often identify as asexual.Diagnostic relationA low score is related to intimacy problemsYour group score: 0.0 of 10 (below average).
Neurodiverse socialThis group contains neurodiverse social traits. The traits are about putting oneself in the centre, and living in small stationary groups. It also includes having trouble with authority, arguingand revenge.Diagnostic relationNone.Your group score: 5.1 of 10 (average).
Neurotypical socialThis group contains neurotypical social traits. The traits are adaptations for socializing with strangers and superficial acquaintances, forming friendships and coalitions. Important traits aresharing and talking about feelings with strangers and superficial acquaintances as a way to socialize and exchange information. Hugging, waving and shaking hands are traits used in theinteraction.Diagnostic relationNone.Your group score: 0.2 of 10 (below average).
Like many people my age (61) diagnosis came late - two months ago. I’m feeling a little left out when it comes to the acronym/number classification. I was just told I’m HFA. Diagnosis took place in a mental health hospital where I found myself due to serious depression. This was my first contact with mental health services. I had realised that I am autistic about ten years before, and some months before I was hospitalised, contacted this site. Unless I’ve broken a bone or something I don’t go to the GP. My follow up visit was the first appointment with the GP for twenty years. When visiting the psychiatrist at my local health services (I was sent to a hospital two hours away), I asked if the the diagnosis was an official diagnosis. He said yes, my GP said the same. I can’t see the point in pursuing a more exact diagnosis - if there is one- because a) an incorrect classification seems possible - maybe likely - the spectrum is so diverse b) what difference would it make?
Similar to many with a late diagnosis I have regrets that a much earlier diagnosis may have improved my dealings with life in general. It’s difficult to make an objective judgement about this. My acute health team worker admitted that the facilities available for people in my position are scarce. A fortnightly group meeting with others who are roughly around the same position on the spectrum, where the main topic of conversation seems to be video games. Video games are way too noisy - visually and aurally - for me.
Although scientific investigations into the biology and information systems of autism interest me, I think the arts offer more practical help in engaging and negotiating a neuro-typical world. The interior monologues and actions of a character in a novel or serious film. Trying to figure out the meanings of poems and lyrics, the movements of contemporary dance and the emotions expressed in some abstract art.
I can’t see any practical advantage in a more specific diagnosis, although I recognise that others may well appreciate precision.
So what do you make of that? It's ten different dimensions, and says the characteristics are associated with autistic spectrum conditions and dyspraxia, and maybe also asexuality. Would you identify as asexual? As having 'intimacy problems'?
Here's mine for comparison (not sure how much information to put on the web, but we're pseudonymous) - it doesn't show all the differences, so I don't look anywhere near as neurodivergent as other people - I suppose a difference in attention and focus and maybe even obsessionality I could relate to (just not Asperger). But genuine NTs are all way over to the left of the graph. The whole RDOS thing is a little tentative since it's from what I'd describe as an 'independent researcher'.
I think it's normal to very common something more from the diagnostician; 'but what does it mean for me?'. That's something that needs to change in the diagnostic process.
I would definitely say I have intimacy problems. Asexuality is a grey area,it depends on the definition used(there is no consensus).