Are there any upsides to getting diagnosed?

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I'm going back to my therapist tomorrow, and I'm thinking about bringing up the self-diagnosis of Autism, but at the same time I can see little in the way of benefits when it comes to getting a diagnosis to be honest, it's just one of those things I don't want people to know about. The only thing I really need help with is: establishing independence, improving social skills (how do you keep a conversation going anyway?), improving eye contact, and, if it's even possible, to fix the monotone speech an asociality.

It might be a better idea if I ask for help with my comorbid problems instead, like ADD and dyspraxia.

As soon as you have the "autism" label slapped onto your record, most medical professionals will presume you're an invalid who can't understand speech ("heeeeeey buuuuuuudddy"). Is it even possible to get help for it in private, without them putting it on your record? Has getting a diagnosis backfired for anyone here?

I think you're probably right about diagnosis being of spurious benefit. It may have awarded you eligibility for assistance in grade school (though in my experience they tended to use a "one size fits all" approach to this). At this point, I think you're better off working on those things, which you already recognize in yourself, as available to improvement.

You can converse a little longer by pulling from the "canned" responses everyone uses. "Are you looking forward to the weekend?", "You bet!", "Ever since Monday", "How's the weather?", "How's work?", "Not bad", "Oh, I'm living the dream!", blah blah blah...

Eye contact tricks like "de-focusing", "looking between eyebrows", "checking in", etc. may help in whole or in part.
You may become more multi-tonal by listening to public speakers. Assuming you can hear differences in pitch, you can consciously practice this --and use it to your advantage by tonally "highlighting" words or phrases of emphasis.

I can't advise on independence based on experience, but I'd guess it would be best done in small increments.

I can think of one important reason to investigate an assessment or diagnosis. Thjat bis to investigate if there is a Root cause of the difficulties with establishing independence, improving social skills (how do you keep a conversation going anyway?), improving eye contact, and, if it's even possible, to fix the monotone speech and asociality, and the problems of dispraxia and ADD which you mention.

If there is root cause such as Autism, then this is important information as the knowledge will help you refine the way you and your therapist work on these issues.

A judgement call is whether to have the assessment outcome as a formal diagnosis or not.

A good friend of mine was under treatment from a clinical psychologist for depression and some related conditions. It seemed that Autism was an underlying cause if not the root cause. They chose a useful middle way which was that the assessment was done with the all recognized tools but the psychologist gave the report verbally.

This gave my friend the key information enabling them to manage their life to minimise precipitating factors for such conditions as depression - they were in business on their own account, successfully, so did not need a formal piece of paper as a means for Reasonable Adjustments or statutory benefits, and the verbal report back means there is no diagnosis on their medical records which can be used by people like insurers to extract more money or contest claims.

I am pursuing a similar route, having arrange a Non Clinical assessment with consultants who do training in Autism issues for industry and commerce. The outcome would come back to me as a report assessing me against the standard criteria allowing an informed estimate of the likelihood of being diagnosed as autistic or not.

To me, diagnosis has been a very positive thing overall. Some negatives, certainly, but they're based on emotion rather than practicality. But, mainly, positive.

However, I got diagnosed so that I could tell people if needed. I think there's less reason to be diagnosed if you're planning to keep it a secret.

Mine automatically went on my medical record. I hadn't been sure that would be the case.

My opinion is that at your age, if you haven't had the autism label slapped on you yet you don't need it. I'm not saying you don't have it, I'm just saying if during the late 90's and throughout the 2000's, it wasn't picked up on, it probably isn't prominent enough for you to now benefit from the label. Quite the opposite most likely. For me I didn't stand a chance of escaping the label and it's like there will never be any escape from it in the future. My autism label and history of it will forever impact anything I ever do in the future like going to college, finding a job or a place to live etc.

Having a formal diagnosis is often required to get special help, and can also open up extra funding as well as special accommodations at work or school.
Where i live, my autism diagnosis is seperate from my medical records, and it only gets shared with my own explicit permission (even when i change psychologists, i have to give written permission to the old one before she can hand over my diagnosis papers to the new one)

Yeah I just have a mild case. I did get extra time allotted at school and college for tests, because they suspected me to have some sort of mild learning disability, but not Autism specifically. Now however, I'm out of all that, and I highly doubt the label will be useful at work; so I guess you're right, I don't need it.

Well if it turns out in the future you do need it or could benefit from it, there's no expiration. Some people here got diagnosed in their 50's.

It likely depends partly upon both how your autism affects you, but also how aware the specific clinicians you run into are of various issues that can be associated with autism. If clinicians all knew all the current research results, they might sometimes be of more help! There isn't even any research on a lot of the issues either, for adults esp., just children -- and one can make guesses on how those childhood manifestations of our wiring differences might affect an adult after decades -- but they are guesses. I try to make it an educated guess though...

I think that it's affected several subtle and not subtle health issues that I have had for decades, now that I got diagnosed last year and have been researching based upon an actual real, correct diagnosis. Even though I have had to then educate a couple of clinicians, I found that taking them the research article works to some extent. (Better than trying to get them to take my word on certain things I suspect.) This included, for me, the very few existing articles on how female autistics can "present", and the tiny bit of available knowledge on problems caused when you've masked for decades.

For me, a deciding issue in seeking a diagnosis written in my chart was my loss of verbal speech etc. under certain kinds of stress. It occurred to me that if I were ever in some major accident or such extremely stressful event, that the diagnosis might be helpful -- I can't always "pass" (though am fortunate to be able to generally do so) or avoid such circumstances. Of course, getting reasonable responses from health care folks in such circumstances is another issue! I am hoping this will improve in the future. Maybe we can help it improve?

There are also interactions between my autism and my response to past trauma, plus the therapy to help said trauma; difficulty "reading" therapists made it very hard for me to trust, I think they haven't always "read" me right either... I think I may not express my feelings the same way, I often take a long time to verbalize feelings or even notice them at times. It's complicated but having a therapist who is willing to learn about autism, as I do, has begun to be very helpful to me.

I mean these as examples based upon my own experience, not any sort of exhaustive list.

Was diagnosed 2 months ago, the day after my 37th birthday.

I went through private healthcare so that it was not on my NHS record (and therefore will be kept quiet from everyone) and it also meant I could get it booked up quicker. For me the only reason to get assessed was because I give myself such a hard time for being a failure at things that I wanted to understand me better and give myself a base point at which to work at.

I haven't really 'worked' at anything since the diagnosis but I think I feel happier about things. I don't see myself as such a failure but more as someone with some quirks who finds some areas harder than most. All in all I am happy about getting the diagnosis.

A diagnoses really helped my marriage--she was finally able to move from trying to figure out why I was different to actually making things better.

Am interested to know who you got tested threw?

Possible Positives
If you are in uni or work it might help you get accommodations and services.
Some people need the certainty of having a professional confirm their suspicions.

Possible negatives
Discrimination at work even though it is illegal.
The label becoming a crutch or an excuse as to why you can not do something. Remember disability does not mean inability.

Last edited by ASPartOfMe on 21 Nov 2016, 5:17 pm, edited 1 time in total.

Suddenly you understand, that you aren´t all those wrong diagnoses and characterizations, that have torn down your self esteem over the years. There is a one word reason for your difficulties - be they mild or severe - and you can start from there and learn to cope - and grow - bit by bit.

To me, there didn't seem much point in having a diagnosis if it wasn't going on my record - after all, I might need it at some point and am all for central records. In any case, my hearing loss and mental health issues mean that I had more files on me that most amass across a lifetime before I turned 18.

I haven't found that anyone treats me badly within the medical profession - if anything, they're more understanding of my needs.

Well, that depends. I was 21 when I got diagnosed, and I've found the label to be extremely helpful. It allowed me to get the help I needed at university, got me into a program with people who helped me find a job, and are supporting me now that I have one (after a history of having been fired from jobs because of my as-then-unknown autism), and entitles me to government supports should I ever need them, as well as qualifies me to get a professional service dog who can help me with the day-to-day of sensory overload, getting lost, crowd control, etc. If you feel like there's anything you have or are doing which would go better if you had some autism-related support, I say go for the diagnosis. If however, you're able to function on your own, have a job you're satisfied with, a financially secure roof over their head, and a social life you're pleased with, you wouldn't really benefit from a diagnosis, and indeed, may not get one because you don't meet the "impairments in major life activities" required for diagnosis.