Why get diagnosed as an adult?

[meepmeep]

Anyone else reluctant to get an official diagnosis as a grownup? I’m 42, and looking at the development of my (neurotypical) daughter is making me (and my mother) realize that I am probably on the spectrum.

I’ve been pondering this for a while now, and talking to my mother some more, and realizing that I really don’t want an official diagnosis. First of all, while my childhood and youth were no fun at all due to the social difficulties, I’m actually doing fine now. I’m married, have a child, have a good job, have some friends - life is pretty damn nice. Yeah, I’m still weird, but I’m a contented weirdo.

Also, I just can’t bring myself to adopt the disability label. I am hyperlexic and read much faster than “normal” people. Law school was a breeze for me and a struggle for my classmates - so which one of us is “disabled”? And if I was bullied in school due to my social difficulties, why am I the “disabled” one instead of the bully (who presumably is pretty deficient in empathy, right?)

All of that, combined with the fact that there really isn’t much a therapist can do for me, is really making me not want to go for any diagnosis. Anyone else in the same situation?

 

[Isadoorian]

For many here, they got an official diagnoses as a sense of closure after looking back in their lives at how they did things differently and acted differently compared to everyone around them and wanted to know why, or they've suspected they were on the Spectrum and wanted to know for sure.

Getting an Official Diagnosis is entirely optional and many are content with being self diagnosed. Also many here share your opinion on labels and being labled.

 

[Hollow Horse]

It depends on how you feel of course but I think for a lot of people like myself who are from the seventies and eighties and who were not only difficult children with special needs but raised by parents and carers who had absolutely no idea what the condition was, let's say Aspergers which didn't become official until 1994, the confirmation in later life was ultimately beneficial for me though I know that I eschewed and dismissed it in the beginning.

It answered so many questions, general and peripheral in my life up until then where things fell into place. Awareness and the availability of information via the internet has meant that there is a larger focus on the autism spectrum and hopefully children, who are tomorrow's world after all, can get help and support faster.

So a diagnosis in later life I think can be very useful but while it comes with a label so to speak, you don't have to wear it. For example, I would rather say that I am artistic than autistic. I have awareness t-shirts but hardly wear them. I just try to be me whoever that is and concentrate on the things I can do rather than complain about the things that I struggle with.

 

[meepmeep]

I guess. To me, actually, just reading about autism and recognizing my own traits was the “closure” I needed - it answered my question of just what was going on.

I guess one of the ways in which I really lucked out was that both my parents, and especially my mother, were extremely supportive and extremely empathetic. They had no idea what was different about me or what to do, and assumed that love and acceptance was the way to go. They were right. I never got to the point of meltdown in my childhood because my parents were so careful to design my environment to be soothing and calming to me. They always at least tried to understand my feelings. They didn’t always succeed, but they always tried and never made me feel like I couldn’t look to them for support. To this day, I have an extremely close and strong relationship with them.

Also, when I was close to 30, I had a bit of an epiphany of self-acceptance. Until then, I struggled a lot with feeling like I wasn’t doing this whole “human” thing right. I was ashamed of the things that made me different, even when those things were better than “normal” (like, I would literally pretend to take longer to read a passage than I actually took, just because I didn’t want to reveal that I was different). I believed that what I had in my head - the things I noticed, the things I remembered, the things I found interesting - were wrong, shameful, and to be concealed. (For example, reading a book and noticing a beautifully crafted sentence rather than focusing on the plot).

It was when I was 30 or so that I realized just how silly this was. It really got me thinking - not so much about any official diagnosis, and I didn’t know much about autism back then - but more about the broader idea of neurodiversity. Why is it so “shameful” to notice one thing and not another? Why is it horrible and wrong to love a writer for their prose style? Can’t there be many different ways of being human?

 

[Fino]

If it's not for any practical reason, it seems to me to be a judgement on psychiatry. People who trust in and think highly of the profession and the methods they employ would find a diagnosis validating. Personally, after more than a decade of involvement in the world of mental health, I don't find their opinions anymore validating than a few online tests and some reading on the subject, which often seems to be all they've done anyway.

Why is it horrible and wrong to love a writer for their prose style?

I wonder what context this was in originally. What else would you love a writer for?

 

[Fino]

I guess one of the ways in which I really lucked out was that both my parents, and especially my mother, were extremely supportive and extremely empathetic. I never got to the point of meltdown in my childhood because my parents were so careful to design my environment to be soothing and calming to me. They always at least tried to understand my feelings. They didn’t always succeed, but they always tried and never made me feel like I couldn’t look to them for support. To this day, I have an extremely close and strong relationship with them.

Holy moly, you should call them everyday and kiss their feet when you see them and such stuff!

I read your post from bottom to top, so the totality of my responses are probably a tad odd.

 

[Suzanne]

At first, I felt there was no need for an official diagnostic, but that was mainly due to not sure how to go about it and could I bare the answer?

I am now official and have the label: disabled AND I find it hard to swallow, but have no choice, due to circumstances.

From what you say, indeed, there seems no need to go forward for a diagnosis.

 

[meepmeep]

I wonder what context this was in originally. What else would you love a writer for?

The story and the characters. For some reason, I’d managed to internalize that “normal” people read books for the story they contain, and barely ever notice anything else, while “shamefully abnormal” people notice beautifully crafted sentences, interestingly chosen words, and other little details. This gave me a terrible feeling of inadequacy and shame until I grew up and realized just how silly it was.

 

[meepmeep]

Holy moly, you should call them everyday and kiss their feet when you see them and such stuff!

Believe me, I do.

 

[Progster]

There are two main reasons why adults seek diagnosis.

1. Because they feel it will bring closure for past mistakes or problems and provide answers or an explanation as to why they feel that they are different, or why some things are hard for them. It helps them to understand them selves, and helps others to understand them, at work in in the family.

2. Because they have depression, their anxiety has become too great, they burn out and have problems with work or their relationships, and so seek help and support from an outside source. I fall into this category. Before that I suspected that I was on the spectrum, but had a job, source of income, had social difficulties but didn't seek a diagnosis, didn't really need it until the crisis hit.

But there are also a lot of self-diagnosed adults, who have good support from their work, families and friends who are managing to cope with life and don't feel that they would benefit much from an official diagnosis, but do gain in various ways from the realisation that they are on the specturm, and that, in itself, is perfectly acceptable and can bring great benefits.

 

[Starfire]

There are a number of ‘disorders’ similar to or including traits of autism such as -

Angelman Syndrome, Fragile X Syndrome, Lanau-Kleffner Syndrome, Prader-Willi Syndrome, Rett Syndrome, Tardive Dyskinesia, and Williams Syndrome.

A lot of people won’t have even heard of or considered that perhaps that’s in fact what they may have, due to autism being more widely discussed and having a higher profile. It takes someone or indeed a team skilled, experienced and fully trained to make an accurate and correct diagnosis, it’s not just a case of making an educated guess.

The point of being diagnosed as an adult is firstly not only to find some understanding about their past, particularly people who were already adults by 1994 before Aspergers was a diagnosis or ASD as it is now.

An accurate diagnosis is also needed to be enabled to access accommodations in the workplace or school/education situation. Self-diagnosis will not entitle one to anything in the UK school system. An oficial ASD diagnosis will.

An accurate diagnosis is also required to enable the correct medication, therapy, or help is given to an adult when needed. I have been offered NHS therapy as someone with a diagnosis, and I’ve also been offered the chance to participate in new ‘treatments’ that were only available to diagnosed people.
No diagnosis, no invitation to participate.

No doubt there are many other valid reasons for an adult diagnosis , but the above are the first to spring to mind.

Incidentally, I don’t accept the disability label for myself either. I may be different, but I’m not disabled.

 

[disconnected]

I went for the official diagnosis a few years ago. I am not a professional, many different things can present very similarly.

 

[Kevin1968]

My feeling about getting diagnosed is that it doesn't matter to me what exactly is different about me, what matters is that I learn to understand what way my traits both limit and boost my performance in life and try to learn ways to compensate for any negative aspects.

If this was a disease that getting the right treatment could be cured, I would of course seek professional diagnosis AND treatment. However I am almost 51 and have managed to get along up to now, a lot of the time completely oblivious to the fact that was any problem (though hindsight clearly shows some issues).

If getting diagnosed would mean that I could get professional treatment it might also be worthwhile, but given the health care system here that isn't likely either.

 

[Tom]

Your fortunate I think, in the respect of having a choice. Not everyone does. So its a matter of weighing the pros and cons and deciding. If you decide to go for a formal diagnosis, you may still try and keep the information private.

 

[Judge]

The most basic reasons to me are:

1) A perceived need or desire to formally validate an explanation as to who and what you are.
2) The beginning of a process to secure government entitlements or legal accommodations in a work environment on the assumption that you are eligible for them in accordance with a formal evaluation that determines your condition to be a bona fide disability.

As others have mentioned, not everyone on the spectrum is disabled as such, though they may well stand out in a Neurotypical society as being "different". My neurology has not kept me from working or being self-sufficient over the years. In essence I accept being "different", but not "disabled" per se. Yet I also refuse to buy into any notion that defines you in accordance with what you do for a living as well.

There's also considerations of the potential consequences of your medical condition being formally documented as a matter of record. Once you've secured such a diagnosis, you yourself cannot take it back. A consideration that can IMO weigh heavily depending on the country you live in relative to both society and politics in terms of how they do or don't relate to formal support for the autistic community. In this sense I'd personally prefer to be autistic living in Britain or Western Europe (except France) than the United States. No question.

In my own case while my life has been a social struggle like so many others, I have never given any thought to seeking much of any entitlement as I have never viewed my autism or comorbid conditions sufficient to be eligible for them. Also I did not stumble onto my own neurological profile until I was 55 years old. Now in my 60s and informally retired, I see no real practical point in securing that formal diagnosis.

Another important caveat to consider is that even if one does secure a formal diagnosis, that they must grapple with the possibility that Neurotypicals in their personal orbit won't necessarily accept who and what they are. There are no such guarantees that come with that formal medical diagnosis.

After years of pursuing self-discovery and interaction with my autistic peers here, I have no doubt that I am on the spectrum. I don't need paperwork to validate it, nor do I want it given the degree of social stigma that revolves around autism in my state and nation. In Nevada it would seem that virtually anything relative to autism revolves around children- not adults. As if it's perceived that we all grow out of it. Besides, subsequent entitlements eventually due me are aged-based and have nothing to do with such a diagnosis.

One thing I do think about, is whether I'm truly one of the "lucky ones", or not. I've honestly never been able to reconcile this. Though from my own perspective, it would seem "we all have crosses to bear".

 

[meepmeep]

My feeling about getting diagnosed is that it doesn't matter to me what exactly is different about me, what matters is that I learn to understand what way my traits both limit and boost my performance in life and try to learn ways to compensate for any negative aspects.

If this was a disease that getting the right treatment could be cured, I would of course seek professional diagnosis AND treatment. However I am almost 51 and have managed to get along up to now, a lot of the time completely oblivious to the fact that was any problem (though hindsight clearly shows some issues).

If getting diagnosed would mean that I could get professional treatment it might also be worthwhile, but given the health care system here that isn't likely either.

Yeah, that’s kinda how I feel about it. I am not too sure if I am in fact autistic or just “weird” in some other way, but whatever it is, chances are it’s not “curable”, and the only thing a therapist will do for me is take my money and waste my time.

By now, having survived the difficulties of growing up “weird” and gotten to a surprisingly comfortable middle age, I’m not sure I’d want to be “cured” even if such a thing existed. I’ve been pondering that one lately, and coming to the conclusion that I kinda don’t want to be “normal”.

 

[meepmeep]

There are a number of ‘disorders’ similar to or including traits of autism such as -

Angelman Syndrome, Fragile X Syndrome, Lanau-Kleffner Syndrome, Prader-Willi Syndrome, Rett Syndrome, Tardive Dyskinesia, and Williams Syndrome

Yeah, but those tend to cause very severe difficulties in functioning, and a low IQ as well. I mean, in Rett Syndrome the patient is nonverbal or nearly so, and has seizures all the time. I seriously doubt that a clinician seeing a functional, employed grownup is going to consider any of those.

 

[GrownupGirl]

I had no idea I had Asperger's until I was diagnosed as an adult. I didn't even know what Asperger's was. And my life had sunk to such an all-time low that I don't want to think what would have happened if I'd been diagnosed.
I can't understand why any adult would rather go through their whole life wondering why they're so different and having to live with labels such as "selfish", "rude", "lazy", "behaviorally dysfunctional", and "mentally r****ed" than receive a proper diagnosis.

 

[Nervous Rex]

I was diagnosed at age 48. I didn't go to a counselor for a diagnosis - I went for help dealing with anxiety. A diagnosis came out of that.

So there's one reason - is there something you want/need help with? If so, go for that reason.

Afterward, I found the diagnosis extremely helpful because:

1) It helped me re-frame a lot of memories. A lot of past incidents where I got negative or unexpected reactions from people weren't because I was "being bad" - they were because I didn't understand things the same way other people did, and I was just doing my best to get by.

2) All this time I've been trying to run and maintain my self/mind/emotions using the wrong owner's manual. You can't maintain a jet using a manual for a bulldozer. A diagnosis helped me see that there is a real, substantive reason why I can do some things better than other people, but flat out can't deal with other things. Getting diagnosed helped me stop trying harder to just cope and start managing the conditions around me to prevent the situations I can't cope with.

 

[Fino]

I found it interesting to note that these people who come to the forum asking people to participate in studies and fill out surveys are people in graduate school or already finished graduate school and are apparently interested in Autism. These are some of the people responsible for diagnosis. Reading the comments of these threads, it can be seen just how highly they're thought of a lot of the time.