NLD Research: Please Grow Up!

"N16" by Karyn Christner

“N16″ by Karyn Christner

I’ve been reading extensively about nonverbal learning disability since my diagnosis a few years ago, and I can’t help noticing that there’s a lack of information on how the disorder affects adults. If you’ve been following the NLD links I’ve placed in earlier posts, you’ve seen that they’re geared toward educators and parents of school-aged children. While the information is sound,  it’s difficult for a grown-up to compare the ways in which NLD affects interactions in the middle school classroom or on the playground to the problems s/he faces today.

"Wet Aluminum Capital Letter L (Washington, DC)" by Jim Kuhn

“Wet Aluminum Capital Letter L (Washington, DC)” by Jim Kuhn

I find this kids-only approach curious, because as humans we spend the majority of our lives as adults, and NLD doesn’t disappear once a child matures. For me, the disorder’s actually gotten more problematic over time. Social interactions with peers have become complex and harder to interpret, and my parents aren’t regulating every aspect of my life.

In his blog, Look Me in the Eye, John Elder Robison writes about these issues as they pertain to autism. His questions are so relevant, that if I was a person prone to plagiarism (I’m not) it would be very easy to replace the word autism with nonverbal learning disability in order to make my point:

What happens to autistic kids when they grow up? Does a kid with substantial verbal impairment have a decent shot at growing up to have a family or a job? Does quality of life get better, worse, or stay the same? What kinds of support or services do middle-aged people with autism need? What do they get? Are they happy?

"D (North Scituate, RI)" by  takomabibelot

“D (North Scituate, RI)” by takomabibelot

I have other questions to add to Robison’s: I wonder too, about the relationships between class, culture, gender and nonverbal learning disability and what happens to those of us with the disorder as we age. Are we destined to suffer from dementia and Alzheimer’s as a matter of course?

Over the next several months, I’m going to be asking NLD adults and experts these questions and more. I’ll be creating a questionnaire that I hope you’ll respond to openly  so I can determine what issues regarding NLD really matter to you. Your input is important. It will make THE ODD BIRD a better blog and a better film.

In the meantime, if you’d like to share your concerns about NLD and adulthood, please drop me a line. My next post is Friday.

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9 comments

  1. Your post strikes such a chord with me.

    I’m 37 and was just recently diagnosed with NVLD. Overall, it has been such an incredible relief. I’ve spent the majority of my searching to be able to put some of my most painful struggles into context. As with many others in the autism spectrum I struggle with associated issues such as Depression, Bipolar and ADHD.

    Up until last year Depression and Bipolar II were the only things on my psychiatrist’s chart but I knew those terms, while perhaps accurate, didn’t begin to explain my feelings of isolation or the struggles I faced on a day-to-day basis.

    I have been incredibly disappointed with the lack of information out there — although I’m finding more and more – such as your blog :-)

    Please don’t stop posting. We are a unique bunch and honestly, I think our words can make a real difference. I’d love to know more about your film project!

    • Hello oneeyedwonder:

      Thank you very much for your comments. I’m glad your NLD diagnosis has helped you–you are right–we are a unique bunch with a lot to offer. I love blogging, so you’ll see many more posts, and I’ll keep you all posted (pun intended?) on the filmmaking process!

  2. D

    Very true. I am 22 and have had NLD and SLD since 6 years of age. I just finished college and am concerned with being able to maintain employment with social concerns plus, the biggest issue I face is in relationships with dating and things of that nature, I never seem to read body language very well, and that has gotten harder as I have gotten older because (I think) people think that adults are supposed to know what to do and being “hidden” in disability is harder to explain, especially when it’s rarely even known and always called “Asperger’s” which it isn’t.

    • Hello D:
      Yes, reading body language does get harder as start you moving in adult circles. There are far more nuanced social interactions between adults than there are were a kid. It’s very good that you know what areas you have difficulties with. Self-awareness is really important for adults with NVLD and only comes with a lot of hard, hard work. I’m still working toward fuller awareness, but I think it will bring me greater success in life. Keep going. Ask for feedback and advice from a trusted person in your life who is good at social interactions. It’s also really important to pay attention to and improve upon what you’re good at.I’m hoping that one day NVLD will have as much exposure as Aspergers and other spectrum disorders and there will be far greater appreciation of our divergent and creative thinking. We need to be ready when that day comes by raising our self-esteem now and doing whatever it is we all do to the best of our abilities.

      Congratulations on recently finishing college!

      Best,
      TOB

  3. DSF

    Hi Lillian,

    You’re completely right about the lack of information about adult NLD. In 2001, after receiving my NLD diagnosis, I tried to find something to tell me how to treat my adult NLD. I found almost nothing; what I saw applied to children; and it described a person more disabled than myself. I’ve read estimates that 1% of the population has NLD. Those estimates have to be wrong; if they were correct, then I’d have met many people with NLD. One of the hardest parts about having NLD is being so alone; we have a disorder that we don’t understand and we don’t learn about others who have the same disorder. I did just start reading Nancy J. Patrick’s Social Skills for Teenagers and Adults With Asperger’s Syndrome. It did describe many things about me, particularly my tendency to emphasize the wrong words in speech. I hope it helps me in my social interactions. But, like you, I found myself relying on something written regarding an autism spectrum disorder in order to better understand myself. The closest thing I found to a good book on adult NLD is Michael Brian Murphy’s NLD From the Inside Out (2d ed.)

    Thanks for writing your blog.

    DSF

    • Hello DSF:

      Thank you.

      It’s really important for people to understand that just like autism, there is a spectrum for nonverbal learning disability. We are all affected by the differing symptoms in varying degrees and sometimes, those who don’t look like they have a disability (no cane or wheelchair, for example) are viewed as shiftless, rude and lacking intelligence.

      I’m hoping that there will be more blogs, more books and more films made about NVLD by people who have NVLD, because there are so many stories to tell. We go through a lot, and the effects of the disorder change greatly throughout our lifetimes. Family histories, culture, class, and other external influences vary greatly from one individual to another, and they help determine how someone with NVLD will fare in life. So yes, there are many, many stories to tell!

      Best,
      TOB

  4. I contacted one of the researchers at Michigan State who participated in the juvenile NVLD brain study. I asked if there were any similar studies being done on adults with NVLD. Nope. None, Zero. As a youth, this disability, and that is what NVLD is to me, a disability, made life hell. It hasn’t much improved with age though at least I now know what the problem is, but in how to deal with it there just isn’t much out there. Maybe the research community assumes we’ve all killed ourselves by now. Sorry to be so cynical, but NVLD sucks.

    • Hello David:

      I’m sorry you’re having such a hard time now. I hope you keep connected with other people with the disorder for understanding and support, and with a trained therapist if you need to.

      Best,
      TOB

    • DSF

      David,

      I admire your initiative in contacting the people from Michigan State. Unfortunately, there is very little information available about adult NVLD. I’m 44 years old. My personal experience is that the symptoms of NVLD lessen as I grow older. However, this seems to vary a great deal by individual. I do have two suggestions as where to learn about adult NVLD: the Yahoo web site for people with adult NVLD (http://tech.groups.yahoo.com/group/NLDADULT/) and the book NLD From the Inside Out: Talking to Parents, Teachers, and Teens about Growing Up with Nonverbal Learning Disabilities, by Michael Brian Murphy. Both the book and the web site have their limitations. The book is written by an adult with NLD who created online surveys for people with NLD and interviewed many people with NLD personally. He is not a psychologist. He wrote that he hopes to enter a Ph.D. program regarding learning disabilities. However, he lacks significant formal education regarding NLD. Despite these limitations, he attempts to describe adult NVLD. I think he did a great job. The Yahoo Group on NVLD is also useful. Its main limitation is simply that there are not enough members, or not enough people who post stuff on the site.

      If you believe you may be experiencing depression or anxiety, talk to doctor or therapist about the problem. Many people with NVLD, including myself, have battled with depression.

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