Benefits of Official Diagnosis of an Adult

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Closure.

Verification that no, not 'everybody feels like that sometimes' (well they might, but when I'm telling you how difficult and exhausting I've found talking to people my entire life, that's not the response I want to hear)

I soon will be 54, on and off antidepressants for over 25 years, all kinds of therapy, been laughed at when suggested AS by my most recent therapist. Live goes ok for a period of years, I am able to BS my way through many things, but then all of it just builds up inside and I dismantle my life. Serious downward career spiral, unemployed, actually living off student loans while attending school, didn't know what else to do, too many burnt bridges.
A diagnosis would mean being seen as who I am, being recognized, we all need that. Social sciences agree that being authentic is essential, that we try and try (all people) if we are NOT recognized. I have tried and tried and tried to fit in, keep a job more than a few years, learn to control things under my control, overcome depression, OCD, other things.
Now I work on not beating myself up for being such a failure, for being so close to homelessness so many times, for trying and failing at relationships on all levels. I try to overcome my urge to point out how screwed up things are, how there are so many being paid to perform functions that don't know what they are doing, from employees of the school, to people who brag about being Christians that are raging bigots, etc etc etc.
Maybe I am not an AS person, maybe I am just screwed up, maybe all those diagnosis are right, combined, PTSD, depression, double depression, OCD, anxiety disorders etc etc etc
In some ways a diagnosis would be some kind of connection; but I ramble...

So as of last Friday, I officially have Aspergers.

The reasons for me to get the diagnosis was because of my employment issues ( I can’t seem to keep a job more than 3 years, even if it’s the best job I’ve ever had ).

I do not like the label and have a lot of anxiety about telling the people who need to know, but the pressure of trying to just be normal for 31 years was starting to take it‘s toll.

This is the first time in my life I feel like there might be some hope.

So I looked over this list that everyone is pointing to and I don't get it...

http://autism.about.com/od/aspergerssyn ... etasdx.htm

except for the one that talks about getting potential federal benefits (and there really are none in the States unless you have a myrad of comorbid things as a result of AS) these other things are just things. How is having a DX gonna help me overcome mall-phobia for instance? It won't. Not anymore than flying under the radar does. I can apply for Therapy and join AS support groups without having any sort of AS DX on my record. My Psycologist labeled me (I did not go in for a dx for AS but for grief councelling so apparently my AS is fairly visible) that is validation enough. I negoitated with him to NOT put it on paper as I've yet to see anything but negative come from having it on paper.

Before diagnosis I got in trouble for all kinds of inappropriate behaviour, and instead of addressing the roots of that, society and people around me judged me as some kind of wicked bastard.

My diagnosis meant I was no longer stigmatised for inappropriate behaviour, or labelled a deviant or a**hole, and got recognition I genuinely have different developmental needs and social expectations, and could get the support and treatment for those needs.

I remember what a counselor said to me: "You are not some kind of bad-guy. You are a human being, with needs, that have not been addressed or acknowledged until now. How you have been treated is unfair, even if your past behaviour is still inappropriate."

I'm from Australia and while I can only speak for myself and what happens in this country, I do have an obsession with disability rights and am not aware of any country in which someone would recieve something like a disability pension based on diagnosis alone. From all that I have looked it, it is based on functional limitations and the like. Yes those functional problems are likely to be caused by the condition and might be seen in the vast majority of people with the condition, but the diagnosis will not result in those entitlements, proof of functional limitations will.

I have immense difficulties in day to day live which have been helped enormously by a diagnosis in the last 12 months. I have finally become eligible for the assistance that I need to function in day to day life. But that also required a change of law to entitle those with a diagnosis on the spectrum with functional limitations to be entitled to apply for help and assistance. I cannot handle the noise of the vacuum to the point that I simply could not turn it on. I also could not afford to pay for someone to do it for me. Hence I did not clean. I have huge food issues, cannot touch food with my hands and hence would not prepare it. I now get cooking assistance to at least provide me with some decent meals each week.

In an ideal world one would be entitled to support based on functional limitations alone and not require a diagnosis as well but that is not the case here. I did need the diagnosis to get any form of assistance.

I'm now 36, been attempting to get some form of help for 18 years, when I left home to severe abuse and the like. Sure I got put into emergency housing, the last thing someone with autism needs, and shoved into the mental health system because of my odd behaviour, but it did not help me. Sure meds can in some cases help with some issues, but they cannot take away the underlying issues, cannot deal with my fears of crowds, noise, etc, etc. The autism causes that but without it being accepted I got nothing at all, and even when it was accepted, I was then faced with no services as they were at that stage under the mental health banner and hence I need medication and to be shown how to chop up food!! ! I was continually kicked out of mental health rehabilitation services because I was not leanring social skills at a fast enough level, was not trying to cook and clean and was not seeking medications to deal with any issues I may have resulting in those problems. I was told that the only reason I did not cook and clean, socialise, etc was becasue of a chemical imbalance in my brain that medication could fix, if only I asked for it!! !

With a change of legislation, the spectrum conditions come under disability services. That does not mean that people are not entitled to mental health services for co-occuring conditions like anxiety and the like. But disability services entitles me to a individualised budget to decide what services I want, where I want them from, what workers I want, what my priorities are, etc. Sure I do not get enough support, but at least now I have some choice and control over what is offered to me, I decide what is more important for me and providing what I choose is considered reasonable there are no problems with it being funded. I am able to choose to see an individually chosen psychologist who has experience with my condition and who I feel can work with me to improve my quality of life. In mental health I had no choice, and nor were my real problems taken seriously, they were all seen as something that a pill could fix.

But having said that I have also changed cities to get the supports that I need, as my previous city was very undisability friendly. I may have had the same budget but I couldn't utilise it there. That budget is not based on my diagnosis, but on my functional limitations assocaited with that diagnosis. Yes I get a disability pension and have for the last 15 years but that is not based on diagnosis, but on functional impairment. I do get some entitled to government health subsidies for psychological support and the like based on diagnosis, but that is only of use if you need and would benefit from that support.

A diagnosis does not and nor will it cause people to suddenly understand me or provide me with anything huge, but for me it has helped as I can now get some of what I feel I need to function and which are provided based on both a diagnosis AND functional limitations. It has also allowed me to finally have proof of what my issues are, and what the causes are and where to look for advice, support, etc. But it is an individaul decision to make and can only be made if you need support for something and that diagnosis would provide you with access to those supports and services.

I got an official diagnosis about six months ago. Insurance paid for most of it. Since I have a piece of paper with an official label, I am now in a position to force my supervisor to treat me like a human being. I'm a fed, I do a good job, but after working with me for quite a while he decided to get rid of me. It's gotten rather ugly. But the paper allows me to file a discrimination lawsuit and it looks like there maybe disciplinary action against him coming up and financial burdens placed on the individuals who allowed the mess to continue. Also I may be able to get a more suitable job out of the thing. So for me it's been amazingly worthwhile.

So now that I have been Diagnosed. I no longer THINK some thing is wrong with me. My wife no longer THINKS something is wrong with me. My family no longer THINKS some thing is wrong with me.

Now we KNOW

And like GI JOE says KNOWING IS HALF THE BATTLE!

Now my family KNOWS I need help and they are willing to listen NOW! They are willing to help. And to understand.

And all I’ve every Really wanted is for some one to UNDERSTAND ME. It took 31 Years but Now we have an understanding.

a diagnosis closes too many doors. Dont get one unless you're really so badly affected that you can't function or feed yourself.

What doors?

AS = autism on any medical file. That means:

1- insurance skyrockets or gets denied.
2- despite laws against it, many jobs will not hire you.
3- want to move to another country? so sorry, you are now a high risk ($ wise) to the country's social services so they wont accept you.
4- getting divorced? chances are the court will not give you custody of the kids.

amongst a few i can think.

Where do you get your information? I find it interesting that you are speaking on behalf of the insurance industry, the labor market, 190+ sovereign nations and the family court system of all 50 states. What do you do for a living that gives you this insight?

It's been useful for me.....without it I couldn't have taken social skills classes and my husband would not have stopped treating me badly for my sensory issues(he thought I was just acting stupid) I've gotten accommodations at the school I am getting my second degree at and have decided to go for my MA. I have been working very hard to be a stable parent and to function better. It's done nothing but help me and to not feel alone has been huge too. It is not on my insurance as it was never medically documented or in my medical history. I do have a formal diagnosis(research) and my life is much better and as it's not in my medical history a lot of the pitfalls from that are not happening. As for my husband getting custody in case of divorce(yeah right) I've been to every doctor, therapy, IEP, and every other meeting parents go to. You have to be very very careful though and it can vary based on circumstance

Florida.

I've worked in nationwide mortgage and insurance companies precisely as the person that asks you the qualification questions, writes them down and then flags the 'risk' indicators for the account managers to view over and decide the rate/denial. Its business: They want to flag as much risk as they can to raise your premiums/interest and if one you have just one one the 'bad' flags you are very,very likely denied. Autism and mental disorder diagnosis flag you as 'high risk' because you'll cost them money guaranteed... and if you've been in any medical facility to be treated for anything related or caused because of it (suicide attempt, expensive psychiatric counseling, etc) you get flagged up to 'bad risk'. Mortgage companies look at your employment and money making ability as well as your finances.. if they find out you have chronic medical expenses then you become a risk to their loan and therefore can raise the rate. Granted not many find out but ive seen it happen when they check their credit history and see 2+ years of large medical related bills.. they want you to be able to pay for the home loan not your health. 'tis how it works.

While working in travel agencies I've had to do some hiring and yes, unofficially, companies prefer not to hire people with disabilities that will cost them money (special equipment/treatment) once they have their gov. mandated quota of special needs people hired. Again, its just business and money is king.

I've immigrated to the US and currently trying to emigrate to another country and I can tell you its common sense for a country not to want to accept someone that is likely to become a burden to their social services net (disability,etc) unless you have a mitigating circumstance such as holding a degree or job experience in a field they really,really need. In fact, the immigration agencies I've used both times actively advice one NOT to disclose any medical issue that is not on your record because that is one of the top reason for denials.

Sadly Ive never been married nor divorced so I have no personal experience on this part but its a no-brainer situation for a judge to decide between 2 healthy, employed parents where one has autism the other is NT which one would the children benefit the most of being with. I put it there as one example I could think.

Most countries do not encourage migration that is not going to be good for them. They are hardly going to bring in someone who cannot work in a needed job, etc. Skilled migration is a very common word.

Sure countries are concerned about the cost of caring for someone, but I personally know of a high level quadraplegic who has just migrated out of Australia without any issues at all. The country rarely looks at the diagnosis alone, but rather the supports they currently require. The person who has left Australia that I know has the Australian government paying for their supports for the first 12 months.

It is all well and fine to say do not be diagnosed, but how the hell do you propose people get any assistance if they are not. You are saying never ask for any form of medical treatment, counselling for anything, never ask for school accommodations, never ask for workkplace accommodations. Don't know about anyone else here, but if my life was that easy without any help, I really would not be classifying myself as being on the spectrum.

As for trying to immigrate to another country, why bother. As one who has enough trouble coping with any change, and in being around any people at all, the last thing I need to do is to try to move to another country.

While I can't comment on the US family law system, such a diagnosis would not be the first thing on the judges mind here, and you clearly have very little understanding of family law from what you are saying. I am not aware of any country in the world where a simple health check is the only thing a judge would use to decide on the place a child should live for the rest of their lives and if it was that simple, it would hardly be as controversial and costly as it is, in all countries in the world.

As someone who lives in a country where health care is provided for free I guess I don't have the health care worries, but from what I have been told of the US the vast majority of health insurance in the US is provided by employers, and those who are not employed are covered under government assistance programs. I know the system there sucks, but the fact is so few people pay for their own health insurance anyway.

As for workplace accommodations, the government here funds them. They have no intention of giving employers any reason to deny employment of the disabled and any disability discrimiantion laws are pretty useless, all they have to say is someone else was more sutiable for the job!! !

But for me the underlying issue is to get the support I need so that I can live. How am I supposed to live without support?? According to you I should be able to marry, have kids, move countries, work full time without any accommodations, etc etc and still be on the spcetrum?? Sorry, but I am actually disabled by my disability and for me having the support I need to get through each day is more important than someone who claims they know what every single health insurance provider in the world is going to do, how every single employer is going to respond, how every single government decides who is and who is not going to enter their country and even how every single family law court judge in the world is going to decide such issues????

"It is all well and fine to say do not be diagnosed, but how the hell do you propose people get any assistance if they are not"

I think the reason you can't understand why I say this is because you are in Australia not in the US. Completely different social services system and quality of life. The kind of services and support you have access to at practically no cost would be extremely hard for a middle class american family to afford.

I advised not to get the diagnosis if they aren't severely affected by AS. Its a spectrum and as such some are affected much more than others. A diagnosis of AS in the US does not automatically give you gov. help.. you have to fight tooth and nail for it and many get rejected and end up with the diagnosis on their record and nothing gained from it.

Health insurance through a job is not very good either. They are riddled with exemption clauses which after translating the legalese read: 'You will pay us X amount per month in return for us covering your yearly health checkups, a discount on prescription drugs and we will pay part of your medical expenses (co-pay stuff).. but we wont pay for costs related to pre-existing conditions you had before we accepted you' .. it is also standard language to bundle mental disorders alongside suicide and acts of god/terror/war disclaimers: 'If it happens we ain't touching it with a 10ft pole'

Problem with that is, when you change jobs you also change health insurance companies so when you change the job the AS becomes 'pre-existing' and oooo boy that insurance will jack your premium rate high and will say NO to medical expenses related to AS. Change job after that and chances are the insurance rate will keep going up and your coverage go down.

To give you an idea... I dont have AS in my medical file but I do have hypertrygliceridimia (or however you spell that.. high levels of a type of cholesterol). 3 jobs ago it was diagnosed through a routine yearly bloodwork test and got medicines prescribed to treat it... when I moved to new job it became 'pre-existing' so that insurance isnt paying for my once-every-3-months blood tests to check on it and I was bumped to a more expensive tier of insurance because of it. In essence I had to pay around $1200 a year (cost of labs mostly) that I didn't have to previously because its on my file.

Left that job and the next job after that also listed it as pre-existing (of course)... and my doctor has suggested I have some sort of resonance imaging test done to make sure I got no arteries clogging up since its the only way to make sure im not at risk of stroke of heart attack. That exam costs a lot of money and the insurance doesn't cover it since its related to a pre-existing condition. I'd have to save for nearly 8 months just to pay for the damn thing. I cant afford it.

More importantly, if I DO have a stroke or heart attack the insurance will barely just pay my hospitalization for that attack but wont cover any rehabilitation or anything else...because they will claim it was caused by a 'pre-existing' condition. If I get a new job after that.. lol that stroke/heart attack is 'pre-existing' at that point and thats a huge red flag that would pop my insurance plan to the highest risk/most expensive one they have.

This is just what a mere high cholesterol level on one routine blood exam caused. What do you think would happen to someone who suddenly puts on his medical file 'autistic' and it becomes 'pre-existing' ? Its not pretty financially ... hence why I mention not to get a diagnosis unless you really, really, really need help. As in, apply for Social Security Income.