Worth getting a diagnosis - opinions?

[Glowgirl]

Hi everyone!

First thing to say is that I do not have ASD or aspergers - I've always looked at the symptoms and deduced that that's not me. But a counsellor mentioned it to me again recently and asked whether I thought it was relevant to me, and researching the current literature has got me thinking.
I'm a 49 year old woman. My basic problem is that I've always had social difficulties. I had a lot of friend rejections when I was younger including being called boring and stupid for extended periods of time which I found really traumatic. As a result I've become very introverted and don't say much and my attempts to get friends and social skills back didn't work. In fact the negative reactions from the general group of people who knew me continued until I was about 30.
Basically when I look at the symptoms for aspergers I have about half of them, but not the other half. I think I'm pretty good at understanding people's emotions and I am also conscious of the way I dress and appear. I don't have emotional "meltdowns", at least when I do I it's all internal and I keep it to myself. I'm a bit noise sensitive but nothing beyond normal. I do however "stim" by turning book pages and do weird things with tossing coins. My real difficulty is with social interaction. I sought help for this during my twenties but nothing was really available, and I don't know whether things have changed significantly since. What I'm basically wondering is what is there to be gained by going through the process of getting a diagnosis? Will any of the treatment options available be appropriate for me anyway? If anyone can give advice about this it would be really helpful.

 

[Isadoorian]

Welcome to the Forums! I hope you make new friends and enjoy your stay in the process!

And yes, many people with autism vary. This very well done article by on a blog site ran by a fellow Aspie shows why ASD isn't necessarily a Spectrum; "It's a Spectrum" Doesn't Mean What You Think » The Aspergian

(P.S. the same person who made that site also created Stimtastic Chewable Jewelry, Stim Toys and Fidgets, an invaluable resource for Stim/fidget toys and the like)

 

[BrokenBoy]

Getting a DX is totally worth it.

 

[Thinx]

Hi and welcome. There's plenty of useful information and threads here to research. Have you read anything about how autistic traits or Aspergers is for women? The diagnostic criteria were formulated based on men, and gender makes a difference to how we are, specifically how we are brought up and socialised. Try googling autism in women. Aspergirls by Rudy Simone, Sandra Hendrickx Women and Girls with Autism Spectrum Disorder and other books are of interest, try Jessica Kingsley publishers catalogue. I hope you enjoy it here.

 

[SolarPoweredNightOwl]

A lot of the information on Asperger's/autism is poorly written to the point of being misleading, and a depressing amount of it is flat out wrong. An example of misleading: Autists often struggle with/lack one specific, limited type of imagination, but some checklists will just say we struggle with/lack imagination, period. Remember also what @Thinx said, and keep in mind that much of the literature and diagnostic checklists have children in mind. Not all "professional" stuff on ASD is wrong, of course, but I highly recommend you read stuff from people who are actually autistic, for a better perspective.

Regardless of whether you determine you're on the spectrum or not, welcome to the forum.

 

[Nitro]

Hi Glowgirl

 

[Sarah S]

As been stated above in this thread i agree and would also add this

You CANT compare youre self with others on the spectrum as this is a highly individual diagnose .Yes we all share some bacic features but other than that we are diffent. + what you also have to concider is both gender. Males are more outgoing ( ie more visibel etc... ) in there diffent stims then us wimen who have more suptle ways in our stims and as a result of this often fall under the radar / there is also said level of possible ASD to concider. And finaly also the co morbid diagnoses to ASD and IF /what you have of them

There isent a specific cure for this if you have it you got it for life and had it since birth. so whether its worth to have a evaluation is more to give you and those close to you a document stating you have this or other diagnosis so that you and the others can better undersrand why you are as you are and have the problems you have . And for the medical faculty to be able to see that you have this diagnose and based on this offer aid in getting youre life together (NOT cure help ) So its Bacikly up to you to decide if this is worth going thru or not.

Last its not uncommon for us females to be diagnosed later in life (they dident find my ASD until i was 37 & i had it since birth )

heres a exelent link that might help answering many of youre questions reg female Asbergers (ASD )
Aspienwomen: Moving towards an adult female profile of Autism/Asperger Syndrome

 

[tree]

 

[Alexej]

Firstly welcome to the Forum!

Last its not uncommon for us females to be diagnosed later in life

There are a lot of folks here who have been diagnosed later in life - both male and female, so a late diagnosis is not uncommon; some have been diagnosed in their 50s or 60s.

 

[GadAbout]

Welcome! As someone diagnosed in my 60s, I'd say yes, it's worth it.

Let's say you are "a little bit" autistic. Well, all the therapy and self-help in the world is not going to overcome your social difficulties if the real cause for it is a differently-operating nervous system. You asked if there are treatment options - well, no, other than better understanding yourself and navigating the world.

 

[clg114]

Welcome to Autism Forums!

 

[Dr. Eh Hol]

From the research I've done, getting a diagnosis costs between $800 to $2,000 depending upon your insurance (if any) and the ability to find a competent specialist, which can be time consuming. Complicating matters, many doctors are difficult to work with: some will simply tell you what you want to hear while others will argue against you as if your lay-diagnosis is exaggerated or outright wrong. The whole process is a crapshoot. I've never been diagnosed because I don't find it worth the money or time. Instead, I find awareness and free online resources invaluable to DIY my own navigation through self discovery and society at large.

Based on your post, you may have been beat-down from normal into ASD territory simply as a coping mechanism to your toxic environment. But, it doesn't matter if you are ASD or not, you can still find good ideas and advice from ASD sources to forge your best life. However, a diagnosis may be valuable to you as many people - yourself or others - cannot consider something real unless it is socially sanctioned and defined. This is something you must decide.

About the flipping pages and tossing coins, my wife is like this and uses ASMR a lot. It's specifically for people that relax with different kinds of noises and there are a lot of Youtubers that provide stimulus from anything you can think of.

 

[Judge]

Personally I've always seen a quest for a formal diagnosis to be based first and foremost upon any desire to secure formal entitlements relative to one's neurological condition. Conversely if you are not eligible for such entitlements, I suppose the only other consideration for a formal diagnosis is "peace of mind". Though you don't need one necessarily to understand who and what you are in being on the spectrum of autism. For me, I came to the conclusion that I had no practical reason to seek such a diagnosis, apart from the potential costs for those of us in the US who are not likely to have the necessary insurance coverage to pay for it.

Apart from my quest to determine who and what I am, interacting with fellow Aspies for several years has made it abundantly clear to me that I am on the spectrum. That I might even be a "poster child" for those of us with a "level one" diagnosis of ASD. However between my interpretation of that "level one" category and being retired, I have no reason to seek any entitlement for such a condition, apart from knowing that government is not likely to give me a penny for it even if I sought as such in earnest.

For myself, I just don't see a need to attempt to validate my own autism. Especially in a world dominated by Neurotypical minds that aren't likely to understand autism in whole or in part. That ultimately it's about what YOU think- and not anyone else. Unless of course that you feel your neurological condition has impaired your existence to a point of requiring financial assistance. Though there's no guarantees of entitlements, even in the event you secure a formal medical diagnosis by a qualified neurologist or psychiatrist. Equally that having that formal diagnosis doesn't mean that those in your own social orbit will suddenly understand and agree with you. And you don't want to wear such a diagnosis like a "badge of honor" either.

Over the years I've been in this community, I can't say that there is any appreciable undercurrent of prejudice towards those of us who are self-diagnosed versus those who sought a formal medical diagnosis. Not to mention the vast number of those self-diagnosed who go onto to obtain that formal diagnosis only to confirm their original suspicions of their Neurodiversity.

 

[Varzar]

Hi Glowgirl, and welcome!

I'm self-diagnosed as of about 6 months ago, at 40 years old.
As @Judge mentioned, if a diagnosis leads to some kind of "entitlements" from the government that might help you, I guess it might be worth it. For me, I don't think there's any such thing available, so why bother?

As for helping you understand yourself, I found the most relevant online tests to be the AQ and RAADS.
I found the RAADS most helpful because it allows you to answer questions based on how you were before age 16. I have changed a lot of my early behaviours in order to learn to get by with NTs.. So a lot of the commonly used diagnostic criteria don't necessarily apply to me anymore.. RAADS takes that into account..
That being said, I still also scored at 33 on the AQ test (> 32 is probable Aspergers, and I gather around 16 is and average score for anyone spectrum of not).

I see the whole process as being something where you can learn and grow yourself. Having a label might help you understand yourself better. But beyond that, a lot of people out there I gather misconstrue the label to mean things it doesn't.. So.. useful as a personal tool, less useful if you expect others will understand you better (with the exception of the few very understanding people out there).

 

[eriley74]

Hi Glowgirl,

If your insurance will cover an official diagnosis, then I say go for it. I was extremely fortunate to find a psychiatrist who specializes in ASD, and her office set up a repayment plan for me. The bill was $5,000 and my insurance covered nearly 50%. It was worth receiving an official Asperger's diagnosis. Although it didn't do jack(poop) for me in the workplace, it helped my wife and me develop an organic, on-going gameplan to help me with social cues and anxiety management, and I can also claim autism accommodation on employment applications. Also, as a writer, developing my characters helps me to study body language and other non-verbal forms of communication, not to mention my NT wife helps me spots situations I have overlooked/misinterpreted.

All that to say yes, it is worth it (if you can) to seek out an official diagnosis.

 

[Autistamatic]

A few pertinent points first:
Some autistic people are VERY good at understanding other people's emotional states. In affective terms many of us are hyper-empaths and cognitive empathy is not the mystery to us that old fashioned understanding suggests. Even those of us who have difficulty with the unconscious cognitive empathy regarded as neurotypical, have our own conscious, deductive methods which reach similar, even at times superior conclusions.
One can be autistic and be a very dapper dresser. The idea that autistic people typically have poor personal hygiene, lack dress sense or coordination, or merely dress for function is a myth perpetuated by charlatans wishing to scare parents about their children's future. There is as much variety in our dress & hygiene as in the non-autistic population.
Meltdowns are not ubiquitous to autism. Some never meltdown at all, some do so in the form of "shutdowns" and still more internalise the intense emotions associated with meltdown, showing few, if any, external signs. Doing so is not particularly good for our mental health and is a contributor to the high rates of anxiety and depression in autistic people.

Is it worth getting diagnosed? Only you can answer that. Most people I come across who have sought adult diagnosis have found it a tremendous liberating influence on their lives. So many have described it as being a huge relief, an explanation of significant elements of their lives and a positive turning point. Once one becomes aware of the reasons behind one's differences it can be a new beginning leading to deeper self-awareness. Instead of focusing on one's differences, one can see the commonalities with other autistic people.
Occasionally it can go the other way. Some people are so keen on fitting into a narrow concept of what they think of as "normal" that the confirmation that they are not and never can be the same as they believe everyone else to be can be too much. It's sad when that happens.

The key question is whether you hold "being normal" in high regard? If you do, then don't bother with seeking diagnosis. If, however, you seek an explanation for your differences then the question becomes more one of finance and/or availability.

Before even thinking about it the best suggestion so far would be to learn more about autism, not from charities, doctors or Wikipedia, but from autistic people. The Aspergian (mentioned previously) is a great place to start since it is almost all written by autistic contributors. YouTube is an excellent resource too, with many channels made by and for autistic people covering just about any aspect of autistic life you could think of.

 

[Crossbreed]

Hello & welcome.

Basically when I look at the symptoms for aspergers I have about half of them, but not the other half.

That is called ASD0.5, a.k.a. half-Aspergers!

What I'm basically wondering is what is there to be gained by going through the process of getting a diagnosis? Will any of the treatment options available be appropriate for me anyway? If anyone can give advice about this it would be really helpful.

Knowing what it is can help you to

• have more realistic expectations for yourself, and
• develop more effective coping skills.

 

[Glowgirl]

Hi everyone!

First thing to say is that I do not have ASD or aspergers - I've always looked at the symptoms and deduced that that's not me. But a counsellor mentioned it to me again recently and asked whether I thought it was relevant to me, and researching the current literature has got me thinking.
I'm a 49 year old woman. My basic problem is that I've always had social difficulties. I had a lot of friend rejections when I was younger including being called boring and stupid for extended periods of time which I found really traumatic. As a result I've become very introverted and don't say much and my attempts to get friends and social skills back didn't work. In fact the negative reactions from the general group of people who knew me continued until I was about 30.
Basically when I look at the symptoms for aspergers I have about half of them, but not the other half. I think I'm pretty good at understanding people's emotions and I am also conscious of the way I dress and appear. I don't have emotional "meltdowns", at least when I do I it's all internal and I keep it to myself. I'm a bit noise sensitive but nothing beyond normal. I do however "stim" by turning book pages and do weird things with tossing coins. My real difficulty is with social interaction. I sought help for this during my twenties but nothing was really available, and I don't know whether things have changed significantly since. What I'm basically wondering is what is there to be gained by going through the process of getting a diagnosis? Will any of the treatment options available be appropriate for me anyway? If anyone can give advice about this it would be really helpful.

OP here, thank you so much for your replies everybody. Diagnosis is expensive and I don't really want one for any monetary reason (to be honest I don't think I'd tell many people). If I was getting one the only reason might be to "rejection proof" myself a bit better as continual social rejections over the years have been what broke my spirit and resulted in me living like a hermit the way I do now. A lot of the literature seems to be aimed at parents and other types of people but you've given me some interesting things to look through. I might talk to my GP as well, but I don't think I'm ready to part with $1000.00 yet.

I did that online AQ test and came out 31! Maddening!

 

[Rasputin]

Hi everyone!

First thing to say is that I do not have ASD or aspergers - I've always looked at the symptoms and deduced that that's not me. But a counsellor mentioned it to me again recently and asked whether I thought it was relevant to me, and researching the current literature has got me thinking.
I'm a 49 year old woman. My basic problem is that I've always had social difficulties. I had a lot of friend rejections when I was younger including being called boring and stupid for extended periods of time which I found really traumatic. As a result I've become very introverted and don't say much and my attempts to get friends and social skills back didn't work. In fact the negative reactions from the general group of people who knew me continued until I was about 30.
Basically when I look at the symptoms for aspergers I have about half of them, but not the other half. I think I'm pretty good at understanding people's emotions and I am also conscious of the way I dress and appear. I don't have emotional "meltdowns", at least when I do I it's all internal and I keep it to myself. I'm a bit noise sensitive but nothing beyond normal. I do however "stim" by turning book pages and do weird things with tossing coins. My real difficulty is with social interaction. I sought help for this during my twenties but nothing was really available, and I don't know whether things have changed significantly since. What I'm basically wondering is what is there to be gained by going through the process of getting a diagnosis? Will any of the treatment options available be appropriate for me anyway? If anyone can give advice about this it would be really helpful.

I was satisfied with the self-diagnosis, but am in need of medical treatment for anxiety, depression, and insomnia. The only way I can obtain treatment is to get a diagnosis. So I am trying to be open-minded about the diagnosis.

 

[Varzar]

OP here, thank you so much for your replies everybody. Diagnosis is expensive and I don't really want one for any monetary reason (to be honest I don't think I'd tell many people). If I was getting one the only reason might be to "rejection proof" myself a bit better as continual social rejections over the years have been what broke my spirit and resulted in me living like a hermit the way I do now. A lot of the literature seems to be aimed at parents and other types of people but you've given me some interesting things to look through. I might talk to my GP as well, but I don't think I'm ready to part with $1000.00 yet.

I did that online AQ test and came out 31! Maddening!

They suggest that 80% of people over 32 are ASD on the AQ test.. That doesn't mean at 31 you definitively are not (you are just slightly under an 80% chance ).. 16 is the average apparently.. So you're still pretty far up there..
I found the RAADS was still more reflective for me though because I've changed my behaviours as I've gotten older to "fit in" better.. RAADS takes that into account better.
As you mentioned, a lot of the literature is for children and parents of children with ASD.. The tests are usually designed similarly, with a younger test taker in mind.