Should I get a formal diagnosis?

[savi83]

Hi everybody,

Should I seek a formal diagnosis for my Asperger's?

When I was 19 years old my college lecturer took me to one side, said that he believed that I had Asperger's and asked if I wanted to get a formal assessment.

That evening I spoke to my parents who told me that it had been raised to them when I was in primary and secondary school, but as I was doing well in school and didn't want the stigma, they didn't pursue it.

Rightly or wrongly, I didn't take it any further.

I am now 36 years old and it something that I have been thinking of a lot.

Are there any benefits to getting a formal diagnosis at 36? Would it help me to get to know myself any better?

 

[Alexej]

There are - for then you have externally affirmed a status; it is not just what you think for/of yourself.

 

[Raggamuffin]

I'm 33 and have been asking myself similar questions recently. The more I've read about the tics and traits of Asperger's the more things clicked. When I spoke with close friends about it, several said they had a suspicion I was somewhere on the spectrum. My family never got my brother formally diagnosed and his symptoms are a lot more on the surface than mine.

I suppose it depends on how you've felt from what you're read and looked into about the condition. I'd imagine most people would feel a sense of relief or understanding from a formal diagnosis. I recall being diagnosed by numerous doctors with anxiety as the cause of symptoms I'd been experiencing daily for years, but I was convinced otherwise. I'm not sure that'd be the case if I was formally diagnosed with Asperger's.

Would the diagnosis lead you to exploring therapy or means of moderating behavioural aspects of the condition?

The closure from a diagnosis could answer or pose more questions depending on the person I suppose. For me, it's a 12 month waiting list for an NHS diagnosis or over £1000 for a private one. As a lot of self-diagnosed people on here can attest to, there's plenty of online psychological questionnaires which can give a good indication. These would take perhaps 30 minutes or so to complete several of them. See how that makes you feel I suppose, and take it further with a formal diagnosis if you see fit.

Ed

 

[Au Naturel]

Hi everybody,

Should I seek a formal diagnosis for my Asperger's?

I didn't get a diagnosis until I was 60 and it was just a therapist stating their belief. I hadn't even thought about it until I was 59 when I happened to read up on the subject and everything clicked.

It explained a lot of things. There were other things it didn't explain. But I was raised in a time when the traits of Asperger's were considered moral failings. If you spent your life wondering why you were different but not understanding anything, it can help. The diagnosis may unlock new paths in therapy.

Probably the most important factor is the knowledge that it has a strong genetic component. If you are really on the spectrum, it is possible that your children will be too. If hubby is Aspergerish as well, it is much more likely your children will be on the spectrum. (That - and not thimerisol - is the lesson of Silicon Valley.)

I am an Aspie and my wife is likely an Aspie, so it is not surprising to see the traits in our children. Knowledge of the traits and the genetic component would have completely changed our parenting strategies. It can't be avoided with a nurturing environment so you have to implement mitigation and support strategies.

It is very important not to then reframe everything in terms of the diagnosis. Some people ascribe everything bad in their life to Asperger's when some of it really isn't so. Some people use it as an excuse - either for not working on an issue or for bad behavior.

You should leave the past in the past. If your present is good, I wouldn't bother.

 

[Alexej]

For me, it's a 12 month waiting list for an NHS diagnosis or over £1000 for a private one.

For me it cost about half that - so that is not always that expensive

 

[Rasputin]

Hi everybody,

Should I seek a formal diagnosis for my Asperger's?

When I was 19 years old my college lecturer took me to one side, said that he believed that I had Asperger's and asked if I wanted to get a formal assessment.

That evening I spoke to my parents who told me that it had been raised to them when I was in primary and secondary school, but as I was doing well in school and didn't want the stigma, they didn't pursue it.

Rightly or wrongly, I didn't take it any further.

I am now 36 years old and it something that I have been thinking of a lot.

Are there any benefits to getting a formal diagnosis at 36? Would it help me to get to know myself any better?

In my case, I was diagnosed at 61 while looking for the cause of chronic insomnia. I was unable to get prescribed medication without getting a diagnosis. It was worth it to me as I am now sleeping 6 -7 hours every night. It also explained some other neurological issues.

 

[Amy Stone]

Hi @savi83 - I am 44 and self-diagnosed with Asperger's. I feel that the self-diagnosis explained what I needed to know and that at this point, I do not need or want to get a formal diagnosis. I believe that at this point, it could only hurt me especially if I had to disclose this to an employer.

About 17 years ago I discovered (through a self-adminstered elimination test) that I had a gluten intolerance. I tested my theory by removing gluten (felt good), eating gluten (felt bad). I did this multiple times to make sure that it was gluten that was causing me to feel sick. I could have gotten a Celiac test, but they are not 100% reliable. But what WAS reliable was my self-administered test. I "know" that I cannot tolerate gluten. The test would just be a formality. It would not change my diet. I believe Asperger's test is the same. Of course, everyone is different so do what you feel is right.

 

[harrietjansson]

It explained a lot of things. There were other things it didn't explain.

a diagnosis itself only describes but never really explains. It's the "talking about the diagnosis" with professionals that will give some explanations. You are not wrong in what you meant. I am only saying that we should use correct terminology.

It is very important not to then reframe everything in terms of the diagnosis. Some people ascribe everything bad in their life to Asperger's when some of it really isn't so.

I agree with this! So true. Let's say a person doesn't clean the apartment. He/she could say: It's because of ASD.
Even if one actually has a difficulty due to ASD it is not such a good excuse if one could have find a way to clean the apartment. Sometimes people say things like this when they are in fact lazy or just did not look up a good way to clean the apartment.


A diagnosis can tell a person what he/she does not have. Let's say a person have difficulty with concentration. That could look like ADD but actually only be ASD. This is why a self-diagnosis can be problematic at times.

 

[Hannibal]

It's different from case to case. Some people are content without one, some feel they need one.

Evaluate your personal pros and cons. Some pros might be unique assistance with school if you plan to return, the ability to take legal action against employment discrimination, referral to proper therapy services and recommended medication that may have not been prescribed otherwise, the ability to apply for disability services if need be, external validation, and medical validation so peers, friends, and family will accept you. I don't agree with it, but some people will not take you seriously or listen to your individual needs unless you've been professionally diagnosed. Family members may continue to write you off as a jerk, a hermit, a bad person, someone who is intentionally difficult, etc if you currently face this problem.

Some cons might be financial costs, not wanting the diagnosis in your medical records (for example: someone might be in the military or planning to go in), and any stigma surrounding it.

The external validation, referral for autism specific therapy, and the ability to say "YES, I do have this, it's a genuine issue, please listen to me" at work, school, and around family made me seek one. I feel much better with a formal diagnosis than I ever did not being sure.

 

[Streetwise]

It's different from case to case. Some people are content without one, some feel they need one.

Evaluate your personal pros and cons. Some pros might be unique assistance with school if you plan to return, the ability to take legal action against employment discrimination, referral to proper therapy services and recommended medication that may have not been prescribed otherwise, the ability to apply for disability services if need be, external validation, and medical validation so peers, friends, and family will accept you. I don't agree with it, but some people will not take you seriously or listen to your individual needs unless you've been professionally diagnosed. Family members may continue to write you off as a jerk, a hermit, a bad person, someone who is intentionally difficult, etc if you currently face this problem.

Some cons might be financial costs, not wanting the diagnosis in your medical records (for example: someone might be in the military or planning to go in), and any stigma surrounding it.

The external validation, referral for autism specific therapy, and the ability to say "YES, I do have this, it's a genuine issue, please listen to me" at work, school, and around family made me seek one. I feel much better with a formal diagnosis than I ever did not being sure.

Does school mean college or university? *'

 

[Au Naturel]

Does school mean college or university? *'

There are probably some colleges that would not want a student who was identified as on the spectrum. Might not be able to legally use that as a reason not to admit but they can always find some reason to use, even if it isn't the real reason. Fortunately, I don't think a college admissions board would have access to that info.

Employers? Yup. Military and government? Yup. Almost anyone who is authorized to do a complete background check and that number is increasing all the time. All kinds of ways to get around medical privacy. It is why I am happy with an informal diagnosis rather than something written up and tucked away in my file. OTOH, I'm now retired so it doesn't matter as much.

 

[Streetwise]

There are probably some colleges that would not want a student who was identified as on the spectrum. Might not be able to legally use that as a reason not to admit but they can always find some reason to use, even if it isn't the real reason. Fortunately, I don't think a college admissions board would have access to that info.

Employers? Yup. Military and government? Yup. Almost anyone who is authorized to do a complete background check and that number is increasing all the time. All kinds of ways to get around medical privacy. It is why I am happy with an informal diagnosis rather than something written up and tucked away in my file. OTOH, I'm now retired so it doesn't matter as much.

Are you answering my question?

 

[Au Naturel]

Are you answering my question?

I am explaining some of the negative aspects to be taken into consideration of a formal diagnosis and how i resolved it for myself. Medical privacy law has intentional loopholes in it. I wouldn't dream of trying to completely answer the question for you. It is a personal decision.

 

[Streetwise]

I am explaining some of the negative aspects to be taken into consideration of a formal diagnosis and how i resolved it for myself. Medical privacy law has intentional loopholes in it. I wouldn't dream of trying to completely answer the question for you. It is a personal decision.

To be clear I asked does school mean college or university?

 

[Streetwise]

I am explaining some of the negative aspects to be taken into consideration of a formal diagnosis and how i resolved it for myself. Medical privacy law has intentional loopholes in it. I wouldn't dream of trying to completely answer the question for you. It is a personal decision.

May I ask are you fluent in English ?

 

[Au Naturel]

May I ask are you fluent in English ?

As I said, "There are probably some colleges..."

In America, college and university are used interchangeably as generic "post-secondary (beyond high school) educational institution other than a trade school." College may be 2 or 4 years while a university is invariably 4. It is just a matter of what name the school was given. Many use "institute" in their name instead. I have attended 3 universities, a college and an institute and there was no difference in the degrees offered.

Public academic institutions at all levels in America are forbidden by law from discriminating against someone with autism but the diagnosis alone is not enough. It has to include significant impairment beyond what a mildly autistic person might experience.

That does not mean that an institution of higher education cannot look for other reasons to deny admission as a way to get around the law. (It is also entirely likely - but not certain - they would not discriminate.) If you've had behavioral issues in the past, they can use that as a reason. Seeing an autism diagnosis might encourage them to look for such or to exaggerate their importance. Or they may admit and deny you the option to live in a dorm using the subjective reason that you would be disruptive due to your autism.

"... Section 504’s and the ADA’s protections are limited in two significant ways. First, they do not apply to all students who consider themselves disabled. Section 504 and the ADA set forth criteria that govern which students qualify for protection. Second, even if a student qualifies for protection, her college can, in certain circumstances, deny her accommodations that she requires to access the college’s benefits and services."

Legal Guide for College Students with Disabilities - Berney & Sang

OTOH, there may be special services you can get. Informing a college of an autism diagnosis is not a given. It needs to be a decision to be carefully considered upon researching the school's policies.

And yes, I do speak English fluently. I had best, as it is my primary language. That is a very strange question and vaguely troubling.

 

[Streetwise]

As I said, "There are probably some colleges..."

In America, college and university are used interchangeably as generic "post-secondary (beyond high school) educational institution other than a trade school." College may be 2 or 4 years while a university is invariably 4. It is just a matter of what name the school was given. Many use "institute" in their name instead. I have attended 3 universities, a college and an institute and there was no difference in the degrees offered.

Public academic institutions at all levels in America are forbidden by law from discriminating against someone with autism but the diagnosis alone is not enough. It has to include significant impairment beyond what a mildly autistic person might experience.

That does not mean that an institution of higher education cannot look for other reasons to deny admission as a way to get around the law. (It is also entirely likely - but not certain - they would not discriminate.) If you've had behavioral issues in the past, they can use that as a reason. Seeing an autism diagnosis might encourage them to look for such or to exaggerate their importance. Or they may admit and deny you the option to live in a dorm using the subjective reason that you would be disruptive due to your autism.

"... Section 504’s and the ADA’s protections are limited in two significant ways. First, they do not apply to all students who consider themselves disabled. Section 504 and the ADA set forth criteria that govern which students qualify for protection. Second, even if a student qualifies for protection, her college can, in certain circumstances, deny her accommodations that she requires to access the college’s benefits and services."

Legal Guide for College Students with Disabilities - Berney & Sang

OTOH, there may be special services you can get. Informing a college of an autism diagnosis is not a given. It needs to be a decision to be carefully considered upon researching the school's policies.

And yes, I do speak English fluently. I had best, as it is my primary language. That is a very strange question and vaguely troubling.

Your first answer to me was very troubling as it meant nothing in connection to do you call school education before college or university or after?

 

[VictorR]

Perhaps it may be helpful to go over some definitions on words as they are used in the North American context. Where possible, I'll try to highlight differences from how they may be used in the British context.

School
Can refer to any place of learning, at any level.
Examples:
+ Sam is currently in the second grade at Wordsworth Elementary. He leaves home at 7:30 each morning to walk to school.
+ MaryAnn has decided, after working for 20 years, to go back to school to obtain a MBA

Public School
A government operated school, generally at the K-12 level. A state school, in British English. These are generally secular in nature, and are usually open to anyone in their "catchement" area though there are regional variations. For example, in the US, there are some public schools refereed to as magnet schools which are selective in nature.

Private School
A privately run school, generally at the K-12 level. A public school, in British English. Often has expensive tuition fees. Some are religious in nature, and some are "elite" in nature in one or more fields, be they academia or sports. May have dormitories due to having students coming from far away.

College
As @Au Naturel noted, this name can refer to almost anything*, though in North America it most frequently refers to a post-secondary institution that specializes in 2** and 4** year undergraduate programs.

In North America, colleges are usually independent, rather than being a constituent part of a university, as is the case in Britain (e.g. Cambridge, Oxford).

In the US specifically, college is commonly used as a colloquial term to refer to any post-secondary institution.

Example:
+ Where did you go to college?


* More info at wikipedia.

** 2 year programs: Associate's degree (US, limited parts of CAN), diploma (CAN), foundation degree (UK)
** 4 year programs: Bachelor's degree. Some jurisdictions permit for a 3 year bachelor's degree, but the acceptability of such programs for admission to a graduate program varies.

 

[Progster]

In North America, colleges are usually independent, rather than being a constituent part of a university, as is the case in Britain (e.g. Cambridge, Oxford).

In the UK, colleges aren't necessarily parts of universities - they can be educational institutions offering mainly vocational courses or other qualifications to 16-18-year-olds who want to leave school at 16 and do not wish to continue on to 6th form (or whatever they now call the last two grades of school) and university.