NLD and life expectancy

This is my local hospital. I know about two cases where a patient was turned away (epilepsy and blocked artery) because they couldn’t convince the triage nurse. Communication is very much a life skill.

I wrote about life expectancy for autistics a few years, and I referred to a disturbing Swedish study. Tatja Hirvikoski at Karolinska Institute had compared deaths in the Swedish population over the last 20 years, and found that the average age for the general population was 70 years, while it was 54 years for autistics, and only 40 for people that had both autism and a learning difficulty. The two main factors were suicide and epilepsy, but the study also showed an increased risk of cancer and heart disease with autism.

This is of course highly preventable. I wrote the other post on my Norwegian blog and it’s still among my three or four most popular posts every year, which indicates that this concerns people, as it should. I don’t know about an equivalent study for NLD, but it’s probably not much different. It may even be worse.  The symptoms known as NLD were described by Helmer Myklebust and Doris Johnson already in 1967. There is a lot of overlap with ADHD and Asberger syndrome, but NLD is still not an official diagnose, which means that getting help is hard.

Someone recently reminded me of the post A Sudden Death in Psychology Today. It was something several members of an NLD group on Facebook wrote together after one of its members had died unexpectedly. There are many reasons why I write about NLD. It can be very confusing growing up with NLD, but even worse when you’re not at ease with life. We are being told that being different is a good thing. Society appreciates different and otherness, right? That’s the official story, but the truth is that you need the right kind of otherness, you have to be different in the right way, in the places society has sanctioned. That’s how it frequently feels at least.

The Swedish study is alarming, but it also tells us that there is a lot to gain from educating people. People with a diagnose need to learn life skills and how to manage with these challenges, while the rest need to learn to include us. In some ways it’s about how many society wants to include, what kind of society we want. The main focus at the moment seems to be to add to the confusion, which I think is the result of a lot of the gender and sexual orientation issues.

It’s easy to say that we not only accept otherness, but that we need it too. We need people that have the drive and perspective many people with these symptoms can offer, but that doesn’t mean anything if no one is willing to employ us. Besides, how many geniuses are there really? Why is society not willing to assume more responsibility? That’s exactly what we are talking about, the general attitude is irresponsible.

Give people a lifeline

Rowling’s dementors were a good description of depression. Ron felt like he’d never be cheerful again. Ilustration photo: Pixabay

Anthony Bourdain wasn’t my thing at all. I have heard his name and seen his face on TV, but I put everything food-related in the reality show category, which is not very appealing to me. Not that I’m judgmental or anything. I just don’t find it interesting myself.

I was still saddened by today’s news of his suicide. It’s sad because I know it’s relevant on a blog that covers NLD, ASD, and ADHD. I very much disagree with people that call these diagnoses psychiatric disorders or mental illness, but there is no doubt that people with a diagnose are more vulnerable than others for developing for example depression and anxiety. That can make suicide relevant. I referred to a Swedish study a few years that found that people with autism had a much lower life expectancy than the general population (54 against 70 years, and only 40 years for people with both autism and a learning disability). Epilepsy and suicide are big factors behind this grim statistics. The study was led by neuropsychologist Tatja Hirvikoski at Karolinska Institute.

I was also saddened because this brings back memories of a girl I liked a lot. She was adopted from Korea and we grew up as neighbours. We went out a few times, but we were never close. I didn’t understand her. She was very nice to me, appeared to have a lot of friends, as well as a very optimistic view of life, but at other times she seemed quite the opposite. I always had a sense that there were some issues. I didn’t know what to do, but we went away for school and eventually started our separate families. I heard rumours some years later of an unhappy marriage, and one day I was told that she had killed herself. I wonder how long she had been feeling that life was too hard, if that’s what she felt. I have found life difficult myself at times, but she was one of the people that made it pretty interesting for a while. I liked her, but I wonder today what her beautiful smile was hiding.

I feel that Anna Spargo Ryan’s reminder on Twitter today is an important one. How do you talk to someone you want to help?

Please carefully consider the way you encourage people to seek help for suicidal ideation. Go super gentle on the details, yeah?

(In Australia, Lifeline is 13 11 14)

— anna s-r (@annaspargoryan) June 8, 2018

One of my reasons for writing about NLD and autism is that I want to encourage people to deal with life. Let’s face it. There is a lot of crap to deal with, but with life skills it is possible to minimize the risk. Sometimes things get too big for us, the world feels too big, and we may want to disappear. In those cases I encourage people to ask for help. The best outsiders can do is to stop attaching stigma to mental illness. Most people will actually suffer from one type of mental illness or another at least once during their lives, so it really doesn’t make much sense to punish people for this.

That’s what we do, we weaken our own society, as well as our own chances when it happens to us, or someone in our family. Think about that next time you don’t take this seriously.