Diagnosis at 43. Help?

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Hi all,

Apologies for the wall of text that follows. This post is a bit of a reach out for help, understanding and advice.

Basically I am 43 and trying to decide whether to go to my Doctor and ask for a diagnosis. However I fear I will be dismissed since I think I am extremely good at hiding all the things that I and many others, have identified as 'odd', having spent a lifetime developing strategies to mask them. Also at 43, will a diagnosis, if I get one actually mean anything? I think it may be a relief in some respects, but I don't know. Has anyone else here been diagnosed in middle age?

I would really appreciate some thoughts, opinions and insights into whether you think any of what I describe below means its worth looking further and talking to my GP, and whether anyone has any thoughts on any of what I describe, or if things strike a chord as being familiar or in any way on the spectrum. Being laughed off by a GP would really hit me hard if I am just plain old eccentric. Whatever that is...


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So I decided to dump out some of the things I could think of that I feel make me a bit different to most of the people I meet. Here goes.

As a child I much of my conversation was 'sung' as it helped me to communicate. Singing the notes helped me hold the sentence together without having it evaporate in my mind. This continued into my mid twenties, when I developed a way to suppress it, as it was becoming an issue in the workplace and starting to affect my career.

I often hold awkward positions when sitting, stress positions, twisted and somewhat contorted. They seem much more comfortable and help me concentrate.

I have always eaten my food one thing at a time, generally from least liked to most liked, or least tasty to most tasty. I dislike mixing different types of foods in my mouth because of the varied textures. I also really don't like food getting mixed up on my plate. Things should stay in their categories. Gravy is tasty but I hate the way it spreads over everything on the plate mixing things together. It makes me feel very uncomfortable.

My whole life I have found a strong compulsion to view and categorize words according to the number of letters they have in them. By this I mean when I look at a word I have to break it into segments. For example if a word has 9 letters in my head it can break down into three sets of three letters or two sets of four (or four of two) with a single letter 'anchor' in the middle. The more stressed or agitated I become the stronger the compulsion to do this becomes. The less balanced or symmetrical words are the less I like them. Unless they have a strong anchor in them. For example the letter A. The symmetry of A as an anchor helps keep the word calm in my mind.


I find it extremely difficult to maintain friendships. I have basically no friends because I don't know how to stay in touch with people. I don't understand small talk, it is totally alien to me. I rely solely on my spouse, son and co-workers for social contact. It doesn't actually bother me much that this is the case, more I feel like it should bother me and the fact that it should bother me but doesn't bothers me.

I've been told on quite a few occasions that I 'drop people' in terms of friendship once they are off my radar. If they move away, or when I've changed job or whatever. I sort of understand what they mean but I just have no idea what I am supposed to do if I don't see people anymore as part of my day-to-day routine. I've also been told I can be very cold and/or harsh for similar reasons. I really don't mean to be though.

I find it easy to talk in small groups or one to one, but once a group reaches more than a few people I remain almost completely silent. I find it extremely challenging to follow conversations between more than a couple of people.

I struggle in social situations generally, I think I am pretty good at hiding this from most people, but the manner in which I operate socially is based on what I think of as look-up tables in my mind. I have learnt what people's expressions and mannerisms mean and observed and cataloged the correct response to them. When I interact with people I am continually consciously comparing back to my look-up table as to what they actually mean, and how I should reciprocate. But the reality is that it is all basically 'faked' and I don't really feel like I understand what's going on at all. It's incredibly draining having to function this way and I often find myself briefly skipping out of social situations to recover for a few minutes. On occasions when I have not been able to escape a situation for a recharge I have found myself completely shutting down and becoming utterly uncommunicative.


When conversing I have to concentrate extremely hard to hold what I want to say in my head, and if interrupted find it very challenging to resume what I was saying. I am also very easily distracted from what I am doing and find it extremely hard to maintain focus on one thing if there are even the slightest distractions. I use my stress positions to help me focus sometimes but this is not something I can do in public without appearing very odd.

I have a narrow scope of interests but within my hobbies I hold pretty encyclopedic knowledge. For example I collect a particular type of electronic music on vinyl and have thousands of records, organised by style, genre, artist, age and BPM. I have also researched in depth how this music is produced, recorded, how records are manufactured, the technology and engineering behind the audio, the machine used to cut records, where they were made how they are maintained, their history, the way grooves are arranged on a piece of vinyl etc etc.

All subjects I become interested in are researched and cataloged in a similar manner.

I also only tend to have only one interest at a time and obsess over it. When my interest in music lulls as it does from time to time, I generally move onto something else for a time and obsess over that. It is sometimes a video game (I like the structure and mechanical design aspects and deconstruct games in my mind as I play them.) sometimes it is a creative en devour, making a book, website, building a PC but whatever it happens to be it consumes me and every second of my spare time is given to it, and every moment I am not actively engaged in doing something else my mind turns back to my latest obsession.

Any given obsession can last from 6 months to several years.

My entire life I have been told by people (my wife especially) 'you've gone too far' because I've taken a conversation somewhere either too dark, or too extreme, too tangential or whatever.

That's all I can manage right now. It's draining thinking through it all.

Heartfelt thanks to anyone who made it this far.

Help?

It is unlikely that a General Practitioner will be able to give you an appropriate diagnosis. Only appropriately-trained and licensed mental-health professionals can make an official diagnosis of an ASD. As far as I know, none of the members of WrongPlanet have that kind of training; and if they did, they would need to interview you in person. Your list of symptoms is entirely subjective, and is therefore unreliable. An objective opinion drawn from direct observation is essential for an accurate and valid diagnosis.

Online tests can not provide an objective ASD diagnosis, either.

I suggest that you ask your doctor for a referral to a psychiatrist or psychologist who specializes in Autism Spectrum Disorders.

1. Write brief descriptions of your suspected characteristics (you have already done this in your post, but using bullet points can help you to refer to them quickly during your assessment). Include examples of your characteristics, especially from your childhood.

2. Read a book or two about ASD. This might help you determine even more suspected characteristics which you might have. A good book is Tony Attwood's The Complete Guide to Asperger's Syndrome. You might find it and others at your local library.

3. Read the DSM-5 Autism Spectrum Disorder diagnostic criteria ( https://iacc.hhs.gov/subcommittees/basi ... eria.shtml ) and the ICD-10 Pervasive Developmental Disorders diagnostic criteria ( http://apps.who.int/classifications/icd ... 15/en#/F84 ). These criteria will help inform you about what will actually be sought during your assessment.

4. If you have completed any self-report autism screening inventories (tests), include copies of the tests and scores if you have them. If you haven't completed an inventory, consider completing the University of Cambridge Autism Reseach Centre Autism Spectrum Quotient (AQ) screening inventory ( http://archive.wired.com/wired/archive/9.12/aqtest.html ). Certain self-report inventories have recently been determined to be as accurate as most diagnoses in research studies.

5. Finally, if you know which diagnostic test(s) will be used in your assessment, learn what you can about it using Internet searches. More and more, assessments use tests which include observation, conversation and some puzzle batteries to help your diagnostician to determine your diagnosis at your current age.

In any case, good luck! And, ask us any questions you have.

Fnord is correct and if you really, really need to know with some degree of confidence, professional diagnosis is the only way to go.

AspieUtah is also correct: those steps will probably be helpful to you.

Books that might be helpful on the way:
http://www.amazon.com/Complete-Guide-As ... 843106698/
http://www.amazon.com/Think-Might-Autis ... 989597113/

Books that might be helpful generally if you do have autistic traits:
http://www.amazon.com/Living-Well-Spect ... 606236342/
http://www.amazon.com/Business-Aspies-P ... 849058458/

Thanks, Adamantium. Your book recommendations are interesting. I hadn't heard of a couple of them.

In addition to the above excellent points, I want to chime in and further emphasize that going to a GP is ill-advised. Seeing a specialist with specific expertise in ASD is, in my experience, very important.

"Eccentric" means that you have unusual behavior, but no impairment. You're right; they don't diagnose people with being eccentric, as there's nothing wrong with them.

Texture/taste sensitivity: Normal for autistics; yours seems to be mild to moderate.

Playing with words, focusing on single letters: Focus on detail; an autistic trait. If this is a mental habit, it's nothing to worry about; my guess is, it's a sort of mental stim, like fidgeting, only with your mind.

Holding unusual postures: Autistic trait. You probably do it because the sensory input is helpful in some way. You say it helps you concentrate--yup. Right now I have got one foot on the floor and the other up on the table, so it's safe to say I do this too. I also rock and flap my hands. Rocking helps me think.

Forgetting to initiate social contact: Common on the spectrum. A trait I have as well.

Being told you were rude, even though you didn't mean to be: Definitely an autistic trait.

Being socially awkward; "hiding it" by cataloguing and brute-force approaches to socalizing; exhaustion from socializing: Very common on the spectrum, especially in the mild range where you're capable of socializing but it's hard for you.

Shutdowns: A common result of mental stress on the spectrum and off it, but more common on the spectrum because socializing is mentally stressful for us.

Special interests: Common on the spectrum; usually quite healthy. Comes from being detail-oriented.

Verdict: Yes, get an evaluation. Your traits sound consistent with mild autism spectrum disorder, the type that can stay "under the radar" until you are in your 40s, the type that when you were a child wasn't well-known.

You'll probably be told that you have something like Asperger syndrome (an outdated diagnosis, but still a term used in many circles for highly-verbal people with mild autism). Or perhaps you'll be told, "You have autistic traits, but you're handling it well, so we don't really want to label you." They'll probably have to differentiate between your autistic traits and OCD, which is a sort of anxiety/superstition-based issue, rather than a neurological difference.

As for whether to get an evaluation: You seem to be doing okay, all things considered. What do you want out of a diagnosis? Social-skills training? Counseling? Just better understanding of yourself? Those are all valid reasons, but in your position you have the legit option not to seek a diagnosis, because you don't strictly need it to survive.

If you want to say, "I know I have autistic traits, but I don't want it on my record; I just want it so that I can research the condition and learn more about myself," most docs will respect that. And you don't really need a doctor to research it for your own enlightenment. You can say "I'm self-diagnosed" once you're sure--and while there's some bias against self-diagnosis on the spectrum, it's not going to stop you from getting what you need out of a diagnosis, if you don't want formal treatment.

A GP wouldn't be able to give you a diagnosis, just a referral. That's fine. Autism diagnosis is tough especially when a mild case has been missed and you've gone into adulthood developing all these look-normal coping skills. You probably want a specialist.

So, I guess, my advice is this: You have enough traits that you could ask a doctor about it and not look silly. But you're also doing pretty well. You know your limits; you withdraw when you need rest, you understand what helps you think, and you seem to be communicating with your wife reasonably well. You can make the decision based on personal preference. Me, I was hospitalized in a mental ward, so I didn't have much of a choice--but you've got the freedom to think about it. Good luck.

Callista's very, very smart about autism!

Awww, thanks, you're making me feel warm and fuzzy inside

Seriously, though, autism is one of my special interests. That's the benefit of special interests; we become experts on them. I bet OP can tell you anything you like about his music or the vinyl it comes on.

I hope you post more, Callista. You're a calming, rational influence here. And a person with lots of intricate knowledge.

I second that emotion.

I agree with Callista. You'd need to go to a specialist for a diagnosis. Before doing so, you should consider three things.

1. What utility you need the diagnosis for- if you need a workplace accomodation, counselling, occupational therapy, or just personal knowledge.

2. Whether you will be able to get those things with a diagnosis. For example, I'd like to be able to bring my security blankets to work and run my fingers on them while I work, but even though a diagnosis would make this a possibility legally, it would be seriously frowned upon with such severity that the legal accomodation is meaningless. I'd like a diagnosis so that my insurance company would cover expensive sound-proof headphones; they don't cover those. A diagnosis would not help me to get the Autistic supports I need.

3. The expense and possible detriment to getting diagnosed. Many insurance providers do not pay for diagnosis of Autism in adults. Many psychiatrists who diagnose Autism do not accept insurance. This means that a diagnosis in adulthood can cost several thousand dollars. Being diagnosed with a disability can affect custody arrangements. I'd reccommend checking to see if it would affect life insurance policies and military service if those apply to you (I don't know if they are affected or not, but I'd guess that it'd be something you'd want to check.)

The consideration between formal diagnosis versus self-identification is a very personal and person-specific choice that only you can make for yourself. Major adult Autistic organizations like ASAN recognize both as valid, though there can be stigma (mostly from NTs, but from some Autistics diagnosed in childhood and adolescence). Either way, welcome to WP and I hope you have found a place here that you can feel accepted for who you are.

Hi. I'm 42 and only just diagnosed. I live in the north of Scotland so my route to diagnosis might not be the same as elsewhere in the UK.

I first raised Aspergers with my GP 9 months ago - GP very nicely said he didn't think so .... 3 months after I went back to se him again. Too much of what I read regarding Asper in females resonates with my experiences.

This time I took lists of Aspergers traits (in females) highlighting all of them which are me. Now he was "ah I see what you mean".

I had to pay for diagnosis - no adult diagnostic service is available in my region. This cost about £400.

I have been diagnosed as having Aspergers. The report is funny in that it says I had no obvious stims (I do but try not to in front of strangers!); shook his hand etc. I know reading it I'm more Aspie than he thinks so am satisfied it is correct.

So I received my diagnosis 3 weeks ago and I'm trying to get my head around all of this!

Hope this helps

I am also recently diagnosed at 43. While I am not sure there is any practical utility in having gotten a professional diagnosis, it was nice to have all the pieces fall into place. It also helps me to focus on learning more practical social interaction skills many people take for granted. Which I guess I could have done before, but the diagnosis gave me permission to say to myself, "I can't do this on my own, I need help in figuring it out."

Please go back and read the beginning of his post, Fnord. He's not asking us if we can diagnose him, he's asking if it's a worthwhile use of time to go to the effort of seeking a diagnosis at the age of 43.

For myself, I'd say that, yes, you sound like you have a lot of autistic traits, and yes, I would consider getting diagnosed to be a valid use of your time and resources. Even if you don't need the diagnosis to get services or specific help, I found my diagnosis to be extremely validating. It cleared up a lot of the confusion and frustration I felt about why I was the way I was, and allowed me to settle nicely into my newly discovered identity, whereas before, I was perpetually bouncing back and forth between "Yes I have it" and "No I don't" and I felt very restless and unsettled with myself and my identity. Let us know what you decide, good luck!

I find the North of Scotland to be a fascinating place.

Just like the West of Ireland.