Aspergers --> Spectrum change

Post Reply New Topic

I’m not sure how it is in your country, but in mine, the diagnosis of Asperger’s Syndrome has been replaced with Autism Spectrum Disorder.

For me this change is challenging because saying I had Asperger’s was straightforward and clear.

Now I have to say that I'm on the spectrum and I have to explain the extent of every single difficulty I face.
It’s very stressful and exhausting and I don’t understand why this change was made.

Does anyone else struggle with this

I hate it too, I wish Asperger's was a separate "similar to autism" disorder, like ADHD. People like me were diagnosed with Asperger's (not autism) for a reason, and "autism" can be rather misleading for some of us. It sounds too serious for those of us who have more complex symptoms and are usually able to live independent lives, even though some people diagnosed with Asperger's might still live at home and struggle but it's usually down to comorbids and lack of confidence, not really the Asperger's itself. Asperger's seems more like an anxiety disorder and typical social anxiety mixed with little fears and phobias about different things and just display a quirky sort of personality but no social cluelessness.

But because many spectrumers have complained that autism is way too different in everybody to require different types of autism or sublabels just because some are high-functioning one minute then low-functioning the next. So they now just put us all into autism just to please those people.

One of the reasons that was talked about during the change of the DSM criteria on places like NAS forums (National Autistic Society) and in the media, is that some people with Asperger's Syndrome were/are functionally disabled, both socially and with every day living and the label of Asperger's Syndrome has become synonymous with being very high functioning for someon with autism, which isn't always the case.

Even if someone with Asperger's Syndrome is higher functioning in some ways than someone with Autistic Spectrum Disorder, the latter who seems more 'severe' in their presentation, both might fail similarly to live up to NT standards and expectations, even if the lower functioning person fails harder.

This is important in the realm of social support and for disabilty benefits where applicable.

It's just people with Asperger's were diagnosed with that specific label for a reason, the reasons presumably being that they haven't had any speech delays so are verbal and articulate, which is an advantage really with social development. So it makes the child more verbal and easy to understand.

I got diagnosed with Asperger's but I still received help and support - albeit me resenting it. The help and support only stopped when I was 22 as soon as I got my first paying job, because I decided to decline it. I hated having mentors being involved with my employment because it meant people were told about my label and I wanted to become independent from it.

Obviously I have more than Asperger's; I have anxiety disorder and ADHD, which actually hold me back more. I wasn't diagnosed with ADHD until adulthood, so now I have that to fall back on (which is more severe and noticeable than my AS ever was), and I can also say I suffer with mental health issues, which I do. I have anxiety to a greater extent than just autism anxiety, to the point where it's a mental health issue more than just a symptom of autism. My anxiety is as severe as people with anxiety disorders and other mental health.

Even a person with Asperger's Syndrome who is verbal and articulate, might still take figures of speech literally, or have trouble understanding sarcasm, or they might be face blind or have difficulties understanding body language and might be unable to read the emotions of other people. They might have alexthymia, i.e., they don't understand their own emotions in any depth. All of those things can cause issues and for a person to be dysfunctional socially, versus NTs.

Then they should be diagnosed with HFA.

Asperger's people are generally more complex. I see Asperger's as like domestic cats, and autism as like lions and tigers and other wild cats - please people don't take this as an implication that autism people are like fierce wild beasts, that is not what I'm saying. I can't think of any other way to explain it.

There was a documentary on YouTube I watched a few times but isn't there any more (thanks to copyright rules ) about a high school in the UK for autistic children only. While every student was different, you could tell they all had autism even if it wasn't that pronounced, they were still very socially affected and wouldn't really survive in a mainstream school.
But there was one boy there who was diagnosed with Asperger's syndrome, and he seemed to lack the social cluelessness that the others had. If you wasn't told he had AS then you'd just see a normal 12-year-old, with behaviour problems. In fact he seemed more ADHD than autism, and seemed out of place around his autistic peers. The only things that made him Aspie was his special interest with Star Wars and it would be all he talked about.
Otherwise, he was articulate and seemed to know more how to form friendships but felt frustrated because his autistic peers at the school couldn't, so he was just as lonely as what he might have been at mainstream school.

Us Aspies are like in-between, stuck in-between NT and autism and we don't always know where we are. We feel like we can't identify with autism but can't really identify with NT either, although we're more likely to survive in the NT world yet we do need some support. I'm fine now, but if I was to be alone (if my partner died, God forbid) and still wanted to carry on living independently then I'd probably need some help. I think I am capable of working full-time though, but with the stress workplaces seem to bring me with all the rules and pettiness and sometimes bitchiness from others and having to do repetitive tasks all day every day can make me become depressed or anxious. If I was in a secure job that I really enjoyed and there were no bullies then I might be able to work full-time and not need any help at all.

^ I know people with an Asperger diagnosis with a higher support need and acting more autistic than people I know with a level 1 autism diagnosis. There are medical doctors working full time with an autism diagnosis while people with Aspergers are living in group homes. To me Aspergers was just a label you for a period of time put on some autistic people.

Yeah, that's why we all have to be autistic now, because of these people who were for some reason labeled as Asperger's but are less functioning than some people diagnosed with autism.

There are people out there who are like me; display AS traits in very complex ways and can be close to neurotypical albeit some difficulties (I mean we all have challenges of some sort, even if it's mild, otherwise we wouldn't be diagnosed with anything at all).
But some people with AS might be in group homes because of comorbids making life a challenge for them.

I've been told by therapists that I have average communication skills, and they are right, I do. I can also function when highly stressed, even though it means bursting into tears and slamming doors and yelling when triggered, although these outbursts go as quick as they come.

My anxiety disorder is what makes my life challenging, as I overthink and even process a lot of information through anxiety, in other words anxiety is my way of processing information, most of the time, not in every case. Like if a change is happening at work I have to panic and imagine the worst case scenario, and even if I try not to think about it the feeling of anxiety is still there hanging over me. Change of routine isn't distressing for me but change in circumstances can be. I think everyone approaches change of circumstances with anxiety to a degree, but because I see danger everywhere I go it's like my brain needs to overthink it, weighing out pros and cons and the most and least likely outcome. Sometimes though my anxiety can make me become avoidant, which can lead to self-care problems like going out. It's not that I can't go out and do errands, it's that I won't because at the moment I have it in my head that I'm going to be approached by an incel and be murdered. So now I've become agoraphobic. Also my emetophobia is disabling too.

You could say that you were diagnosed with Asperger's but the name has been deprecated in favor of the Autism Spectrum. You could then ask whether they have any questions about your disability or autism. There is no need for a monologue to explain your disability and most would prefer an interactive dialog.

@Vitowski and @Tamay,

I fully agree and felt the same frustration.
I now have a bussiness card with 8 sentences on explaining my diagnosis and comorbidities. Ending with a last phrase: "Yes, I could have told you this but am tired of repeating the same 7 lines each day 50 times a day "
Does it help...? in a neutral count comparison; it has cut in half the number of times I had to go into detail. so i'd say 50% it helps

kind regards,
Kada

I support this change & I'll talk about my experiences to demonstrate why.

When I was tested for autism at 20 I got told that I communicated too well verbally & am too intelligent to be on the autism spectrum & the quack mentioned that I had a high-school diploma. I majorly struggled in school due to dyslexia & ADD along with social & other issues & I only passed some of my classes because my teachers curved my grades. Apparently the fact that I graduated high-school meant that I can not be autistic even though I received a bit of services & support My paperwork stated I had Aspergers Personality due to having Schizoid Personality Disorder & I had nothing on the autism spectrum. It also said that I had depression & Borderline Personality Disorder & that I fit all the main features of Schizotypal Personality Disorder but did not have Schizotypal. I think the reason why I got the other diagnoses is because I was struggling with a psychotic depression at the time.

My psychiatrist who said I had autism & referred me for testing also had me put on a waiting list to receive support services from the state due to having a developmental disability because autism was/is thought to be one. My name came up on the list about five years later. They talked about services they could potentially offer me for a bit. However they later said my psychiatrist's diagnoses was not accepted because she was not qualified to test for autism & they would not accept the diagnoses from the person who tested me because my diagnoses would of had to specially state that I had autism. Big surprise that being officially diagnosed with Aspergers Personality due to having Schizoid Personality Disorder & nothing on the autism spectrum means I do not have a developmental disability & therefor can not qualify for any support services specially related to developmental disabilities

I've been majorly behind my peers with most things since I started going to school & I kept getting further behind. I also had lots of typical Aspergers symptoms like normally being oblivious to body language & facial expressions. Problems reading tone of voice. Sometimes not getting sarcasm & sometimes not understanding when others are joking. Thinking literally a lot & thinking in black & white some. Others often misreading me & thinking I'm happy or very amused in sad situations or in normal situations I seem upset & angry when I'm not. I have various sensory issues. I kinda have a need for routine & predictability in daily life. In the past I've had lots of bad meltdowns related to sudden unsuspected changes or getting frustrated with various things especially my mom being on my back about me not being more independent. As a kid I was often in trouble for being rude, offensive, & mean when I was trying to joke around like others were doing or when I was just trying to interact or respond to others. I majorly s#ck with small talk. I stim with my hands a bit. I sometimes talk to myself which I did around others a lot more when I was little. As a kid I also made random noises out loud while daydreaming sometimes not realizing it. I was in trouble a bit for making non-loud noise or non-loud talking in elementary-school.

I received services in school where about 1ce or 2wice a month I missed a class to see a paraprofessional to work on gross motor skills. I also saw another once 1ce or 2wice a month to receive speech therapy to work on pronouncing sounds like S, F, Z, Th, Ch, Sh. I quit being eligible for the motor-skills one when I started high-school. I was still eligible to receive speech therapy when I started high-school but I would of had to walk to the school next door(it did elementary through middle school) & that would have caused me to miss two classes & my speech issues were a lot better at that point & they weren't quite sure how much more I could realistically benefit so I also quit the speech therapy when I finished middle-school. At one point in elementary-school I was watched by some paraprofessional in order to keep getting services & she wrote that I watched other kids play & was part of their group while also somehow at the same time not part of the group. She also wrote that she suspected I had Oppositional Defiant Disorder due to the way I responded to others like my teacher.

Looking at all this stuff together seems extremely likely that I do have autism today but the stereotype back then of autistics being too low functioning to talk well or being able to go to typical schools prevented me from receiving an autism diagnoses & might have prevented me from receiving other types of supports & services related to autism.

I would get reassessed, but I suppose the fact that certain change makes me anxious and the fact that I was socially isolated during my teens (no friends at all for a time) and the fact that I am noise sensitive (only to specific sounds though) is enough evidence that being reassessed will be a waste of my time.

I hate my stupid brain and the way it's wired. Why can't it just be wired as a standard NT brain like everyone else? What happened while I was in the womb? My father should have gave himself a little shake before putting it in my mother and should have said, "come on, let the sperm carrying the super-NT genes get into the uterus first, we don't want a problem child!"

A brief history
In the late 1970s clinician Uta Frith having noticed that no Autism prevalence surveys had been done since the 1960s did one. She noticed many people that were being impaired by Autistic traits but did not fit into the strict diagnostic criteria of the time. She wanted to expand the diagnostic criteria but worried that parents would refuse to get children assessed for a condition that at the time was associated with “ret*ds”. Her solution was to call it by a name that was not associated with “ret*ds” which was “Aspergers” which became an official diagnoses in the early 1990s.

The diagnostic criteria for Aspergers was what is informally known as “High Functioning Autism” which was defined as Autism with Average to High intelligence sans language delay prior to age 3.

What was not anticipated was that the internet would become widely available to the public at the same time. This allowed people to find each other that previously could not. This led to an massive increase in diagnoses. There was a feeling that the Aspergers diagnosis was causing a massive over diagnosis of ASD’s. That people who were just socially awkward or a**holes were being diagnosed, that Autism was becoming a fad. Also the diagnostic criteria for Aspergers often depended on which clinician was doing the assessing. That is why the Aspergers diagnosis was subsumed into Autism in 2013.

This caused an uproar especially among adult “Aspies” who felt finally having found answers as to why their life had gone wrong, who had found their Aspie identity. The fear was these mean NT’s were going snatch it all away.

In order to placate these fears language was put in the DSM that all legitimate Aspergers diagnosis were now Autism Spectrum Disorder diagnosis.

Once Aspergers became a colloquial term people could define it as they pleased and that is why it has become synonymous with cute socially awkward geniuses. The average intelligence/moderately impaired part of Aspergers has been memory holed.

Opinion=mine:
In order to to deal with Aspergers being too broad of a diagnosis they made it part of a broader diagnosis(SMH).

The Aspergers diagnosis is not coming back. It has been gone a dozen years now. Whatever chance it had to return ended when in 2018 two historians exposed Hans Asperger’s complicity in the Nazi eugenics program.

My hope is that a lot more subcategories are added and that they are named after predominant traits.

I don’t want the above to be misconstrued as language policing those who describe themselves or identify as Aspies.

^ This is how I got myself assessed for ADHD. When I was younger I thought I did not have ADHD at all and that everything I did was down to Asperger's, but since the autism criteria thing was changed I began realising that I had too many traits that didn't commonly fit the autism criteria, such as hyperactivity, impulsiveness, short attention span, etc.
Obviously autism claims all of those traits, which is irritating because it kind of makes other conditions sharing similar traits become hazy and people are just assuming autism these days. But autism should shut up and just stick it its original symptoms rather than "stealing" all the traits from all the other existing neurological disorders as well.