Benefits to formal diagnosis of dyslexia as an adult?
May 15, 2016 5:41 PM   Subscribe

I think my boyfriend might be dyslexic and I'm debating how much to bug him about getting it checked out. But how would you even treat dyslexia in a 30-year old, and is there any benefit to getting a formal evaluation and/or diagnosis as an adult?

Please take my word that the signs of dyslexia are there and that regardless of labels, it's becoming an issue in his professional life. He's been working on his writing but I'm starting to think he might actually have problems with the uh, mechanics of reading, for lack of a better term. He's intelligent, good with people, went to a good school, and works in a technical field; I can easily imagine a learning disability going unnoticed as a kid.* So far, I've just pointed out some patterns to him, brought up the idea, and he's agreed that it's a possibility. We have differing philosophies of wellness and medicine (clearly I'm all about Dr. Google and he won't take a Tylenol if he can avoid it) so he's unlikely to pursue it further without a little prodding and I haven't pushed it, but I absolutely would if there was a clear benefit.

*As was the case with my ADHD, which went undiagnosed until I (intelligent female age 29) nearly flunked out of grad school. He will constantly say things like, "No no, I just need to buckle down and proofread better, I just need to take the time to read it out loud" and it sounds like all the times I told myself, "I just need to sit down and really concentrate this time..." It's definitely coloring my view of his situation, which is why I've been actively trying to rein it in so far.

This question is as much for me as it is for him. I hate hearing him beat himself up for something that might be more a matter of wiring than willpower. If there are ways to avoid all that frustration, of course I'm going to encourage him to get help. If there aren't (or he won't), I'm equally OK dropping the subject, knowing that I tried. However, I just can't seem to find much information about what you can actually do for adults who think they have undiagnosed dyslexia. 'Seek evaluation and professional assistance.' Ooookay then...

1. What type of professional would you go to for an evaluation and/or treatment?
Neurologist? Psychologist? Reading/learning disability specialists almost all seem to work with children, and if I throw 'adult' into the search mix, I mostly find resources for illiterate adults. Where do you get help for learning disabilities, once you're outside of the educational system? General advice would be great although we're in NYC if you happen to have a specific recommendation.

2. How do you treat dyslexia in someone who actually reads OK already?
In kids, it seems like a lot of it is creating supportive environments and developing good habits while they learn to read. What's the strategy for an adult who has already learned ways to compensate? There are still obviously issues, or I wouldn't be posting this question, but what do dyslexia-specific interventions bring to the table, in this case, that 'regular' ways of improving your writing (like classes, reference guides, getting an editor) don't?

3. Is there any benefit to getting a formal diagnosis as an adult?
I saw this old AskMe but I'm specifically interested in treatments. He's unlikely to need classroom/ADA accommodations and it's not like ADHD, where the obvious benefit is having the option of medication. Are there treatment options that wouldn't be available without a diagnosis? (Money is part of it, but also just cost-effectiveness.)

4. Are there strategies/hacks he could try on his own, regardless of diagnosis?
For instance, I've read about overlays that block out one line of text at a time, and making generous use of grammar-check and text-to-voice software. Mostly though, I just see homework and studying tips for kids and parents. Are there any good resources for adults? Where's the equivalent of this thread for dyslexia?

Metafilter and specifically this ADHD thread have been instrumental in helping me get my shit sorted out after years of sorta muddling along, and I know I'm not the only one who feels this way. I'm really interested in hearing about the MeFi community's experience with dyslexia and hoping it can help my boyfriend and others as well.
posted by anonymous to Writing & Language (9 answers total) 8 users marked this as a favorite
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It sounds like he is doing just fine. He reads, he writes, he has a career. It doesn't seem like he's broke enough to need fixing. I don't know that a diagnoses would do him much good at this point.
posted by myselfasme at 5:54 PM on May 15, 2016 [1 favorite]

I was diagnosed with dyslexia as an adult (I participated in a research study for a FoF doing her masters so I didn't even realise I had a different way of looking at things). The formal diagnosis has had zero impact - except when I want to use it as excuse ("no, I don't want to be on your spelling team because I will bring everyone down"). By the time you are an adult you have picked up most of your coping skills; he could probably learn a few new ones with an executive/life coach, but he has to want to put the effort in and maybe he doesn't.
posted by saucysault at 6:19 PM on May 15, 2016 [3 favorites]

I hope you hear from people with dyslexia because you need to let your boyfriend decide what he wants to do. You can't decide he's dyslexic and needs to change. It's a complicated condition too because it's often confused with other conditions and dyslexia is more neurodiversity than a flaw in reading. It's who he is.

But stop buying him books and printing stuff for him to read. If he prefers to communicate orally and through activity or demonstration, do that. Don't write lists, send him a stack of single item text messages so they're visually broken up into discrete units. Ignore his spelling mistakes in your own communications. Listen to audio books together and watch plays or films. I love books, and I struggled a bit letting go of the idea that my kid would 'overcome' dyslexia and love books someday too, which was unfair.

I worked once with a really smart guy with dyslexia who showed me his first draft of a report and it was barely legible, like shorthand with spelling errors and sentences backwards. All the ideas were in there though, and he had a system with another colleague who read through and rewrote that draft, they edited the third, and the final piece was great. I'm not saying be your boyfriend's editor, but plenty of adult dyslexics work out ways around literacy to get their ideas across, either through teamwork or increasingly technology with voice transcribing.

I did put the dyslexic font on my kid's phone, that is pretty cool, and he's kept that, but ASK first. Try it out on your phone first and show him.
posted by dorothyisunderwood at 6:21 PM on May 15, 2016 [1 favorite]

Based on marrying into a family with three generations of adults with dyslexia who can read and have successful professional careers:

- I think this is a case where self-diagnosis could be as useful as an official one. I don't know of anything that would be unlocked by a formal diagnosis unless he found that he needed accommodations at work that he couldn't get just by asking. However, there is a benefit to understanding that something are hard because your brain is wired differently, not because you are lazy or not trying hard enough. It can also be helpful to see how different problems are actually connected and it can give you both a lead on ideas that help. (yay for strategies that actually help!)

- At least some of the reading/learning disabilities will also offer adult coaching. It isn't as well advertised because there is far less demand for it. (This is what my brother-in-law did at the same place that was tutoring his 5 year old for her dyslexia.) Look for someone that can provide a few sessions of coaching type support. Given his level of success, I don't think he is going to be trying to re-wire his brain with extended training. Rather, he would help identifying the technology and tools that help convert hard problems that run straight into the dyslexia to easier ones that use his other strengths.
posted by metahawk at 6:28 PM on May 15, 2016 [1 favorite]

My mother had undiagnosed dyslexia - like, she figured it out when she was in her 40s.

She was a brilliant attorney and all-around smart lady who couldn't spell if her life depended on her*, wrote gobbledygook first drafts of everything longhand, and hated reading because it was just kinda hard for her (though she could do it, obviously, as she got through law school). Typing anything was absolutely not possible, it would take her hours, the QWERTY keyboard was basically like asking her to learn a whole separate language. Like dorothyisunderwood's friend, she had a system with a few colleagues to help her clean up and refine her writing so it made coherent English, had an assistant who typed things for her, and did just fine. If she ever had to write a letter or an email to family she'd dictate the general idea of what she wanted to say to either my dad or me and we'd type it for her and clean it up and it was all good. (If she had lived to use a smartphone I imagine she would have LOVED the voice-to-text features.) I don't know what her life would have been like had she been diagnosed in her youth, but she turned out pretty damn good anyway because she developed workarounds for the things that she struggled with.

So I guess what I'm trying to say is that maybe at this point a formal diagnosis is less important than encouraging him to develop and leverage workarounds.

*I still have a top ten favorite list of thereemom-spellings. She passed away when I was 12 and everytime I encounter a word that she notoriously had difficulty spelling it brings a smile to my face because she legitimately DNGAF that spelling was not her strong suit. She was a confident kooky lady. I see that your boyfriend is beating himself up for his difficulties - I know this is easier said than done (because I don't really know where my mom got this kind of confidence), but maybe if he could try to take pride in that which he does well and embrace the things he struggles with as just a part of what makes him awesome in general, that might help. I dunno.
posted by thereemix at 7:27 PM on May 15, 2016 [4 favorites]

You should both read the book "My Dyslexia" by Philip Schultz- the author really gives a good view of what it means to be dyslexic, and he talks a lot about self esteem and self doubt.

I had been diagnosed with Dyslexia as a child, and was always a very good reader and didn't really understand how my dyslexia manifested itself until I returned to finish my BA- being able to organize my thoughts into writing is really hard- I can do it, but it always takes me way longer and multiple drafts.

You need to find a Neuropsychologist to do the testing- but it is *really* expensive, and insurance generally doesn't pay for it. I need a reevaluation for when I take my teaching test, and I have not been able to afford the cost (in the Boston area it can be as much as $3000.)
posted by momochan at 7:50 PM on May 15, 2016 [2 favorites]

I have heard multiple times from different sources that certain types of dyslexia can be (at least partially) alleviated simply with colored lenses, like tinted sunglasses. Whether or not that's actually true, it would be enough to make me say "huh. Maybe it's worth a doctor's appointment to check it out". Since it seems like the place he is now is somewhere between "admitting you have a problem" and "taking action", maybe the possibility of an easy fix is enough to get the ball rolling.
posted by sexyrobot at 8:51 PM on May 15, 2016 [1 favorite]

I think myselfasme may have been referring to Open Dyslexic, which is a font that has a very obvious top and bottom. It's a neat idea. Your husband might like it.
posted by aniola at 11:03 PM on May 15, 2016 [2 favorites]

Speaking from my own experience its certainly not unusual for dyslexia to be undiagnosed. Itsonly when people try and do things that are slightly beyond their naturally developed coping mechanisms that these issues can be apparent. For me it was only when I got to university and needed to write extended assignments where I had to join different ideas together and couldn't keep everything in my head that I started to struggle. Unfortunately my tutors at Uni didn't understand this either and I ended up dropping out, only return a decade later, get diagnosis, support graduate and go on to do a masters.

From my perspective at University, getting a diagnosis was the key to opening all the doors and making everything so much easier / more possible for me.

Diagnosis here in the UK was a matter of making an appointment with an educational psychologist who did a bunch of various intelligence tests; the way it was explained to me is that dyslexia is diagnosed as an imbalance in intelligence; so while I was officially a "genius" in verbal reasoning, I couldn't do sequencing to save my life! As an experience it was pretty low key; and i received a big long report at the end that explained everything and I bring out any time I needed to explain this to officialdom, which made getting help much more straightforward. It was expensive - about £500 all told I think, though this was reimbursed by my university.

Having a diagnosis was a bit of a shock, and sadness, but also explained a lot of my previous problems and put a lot of things in perspective, and while this was tough and touchy emotionally for a while personally, in understanding the nature of my problem (ie I wasn't lazy, stupid, etc etc) was very positive and helped me understand as well as made me very determined to live up to my potential.

On an official level support included a new pc and a bunch of software and other stuff it was the technical help, coaching, an amanuensis and additional time in exams that really made the difference for me, but also the knowledge that my experience of my education was "different" and needed a different approach sometimes, and to ask for help and clarification, and the confidence to tackle things in my own way.

While this made a real difference at University, and in academic writing it didn't make a great deal of difference in the rest of my life or in my day job (I don't need any other support to do my job, though having a diagnosis means I could access this if needed, which is handy).

Disclosing at work can be tricky in my experience, and I've certainly had several situations where this has been decidedly awkward (so it pays to be careful), especially when it comes to recruitment and in the early days of a new job or in dealing with difficult managers, though your mileage may vary as they say. Though I don't generally make it known I do make managers and other people aware if needed (which can be challenging) but its down to personal taste.

Hope this is useful, but if you do want to know any more feel free to memail me.
posted by Middlemarch at 12:51 AM on May 16, 2016

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