“THIS IS WHAT I FEEL”

As I stated in an introductory post, it’s important to me to include here voices other than my own, and I’m particularly interested in the experiences of those for whom mindfulness is, was, or could have been a saving grace based on childhood challenges of all kinds.

Julia is a woman living in Britain, who was diagnosed in adulthood with autism spectrum disorder. Although busy pursuing post-graduate studies, she graciously took time to share some experiences and reflections with me.

First, would you describe your mindfulness practice?

I aim to do a formal meditation practice every day. In reality, this happens in phases, depending on how I’m feeling and how busy I am. I have a set time, first thing in the morning, because I manage to get things done better if I have a timetable.

I often use the CDs I got from an eight-week mindfulness course to guide my meditation practice, but if I’ve been doing it regularly for a while, I can also do it in silence. I like to mix up different meditations—e.g. walking, body scan, different versions of the same thing by different people. My favorite is probably the 45-minute sitting meditation because [the duration] allows me to really get into it. But it’s also the hardest.

I am currently working through a book, which is set out as a course, and am finding that useful for getting myself into meditation again [after a break]. Some days, I spend part of the meditation timeslot reading, and then do a practice based on what I’ve read.

How is mindfulness helpful to you—whether in general or in relation to autism?

In general, it’s helpful for feeling better about myself and enjoying what I do. It helps me accept limitations and difficult things and make the most of [my abilities].

In relation to autism, I find it helpful for two particular things: 1) trying to notice how I feel, and 2) creating space when things are overwhelming—this could be sensory things, people, or anxiety in a difficult situation.

That kind of space is so valuable. Can you describe how, for you, it’s created?

Quite often when I’m busy, it is easy to feel swept up in tasks and ideas about what I’m doing and need to do—they press in and swirl together. It can feel overwhelming and as though there are no edges to separate what’s happening.

Through practicing mindfulness, you learn to observe those thoughts and activities without being tied up in them. There is a bit of space between you and everything else. The result is feeling more in control, more able to choose what to do, and perhaps also more connected to what’s happening.

It’s a bit of a paradox, isn’t it, how stepping back can lead to feeling more connected.

An analogy might be looking at a painting in a huge gallery. It’s very detailed and wonderful, but you can’t see all of it at once. You see it in a fragmented way. At the same time, you’re also trying to read the information card about it but keep switching between the painting and the card and get all muddled up. Mindful “space” would be like if you were to walk to the other end of the hall. There you can easily see the whole picture. You enjoy just looking for a while, then read the card uninterrupted, then choose specific parts to study based on the reading. It’s all still there, but clearer, and you are able to choose how to view and approach it.

How do you think mindfulness activities might have helped you as a child?

This is hard to say. I was easily absorbed in observing things like insects and animals, and I think I might have been able to transfer that [observation] to internal things, with the right help. Maybe starting by watching external things, then being taught to transfer that skill inwards with concrete examples and suggestions—with care taken by the teacher not to tell me how I “should” be feeling.

That’s a brilliant idea—so simple and so apt.

I was even worse [than I am now] at understanding and identifying feelings when I was young, so I don’t know how successful [such training] would have been, but I could have learned to be kind to myself. I was very empathetic with animals when I was little (and still am), so maybe that could have been used as an analogy to help me understand.

For example: I could tell if a pet was unwell long before my parents noticed, but they always trusted what I said and took it to the vet immediately because I was always right. Maybe there might be a way to help children use that sensitivity to small details to notice changes in themselves and to be kind to whatever they feel, the same way you would never judge a dog or rabbit for being scared or unwell or in a bad mood.

I don’t mean an arrogant, “This is what I feel, so there,” but rather, “This is what I feel. I don’t like it, but I’m still okay—it doesn’t make me a monster.” [For autistic kids] that acceptance might be a first step to being able to identify needs and to ask for help.

I gather you had some unhappy experiences.

I want to make it clear that my parents are wonderful, kind people who did the best they could with an undiagnosed autistic child. I would often get upset and wound-up about things that I couldn’t communicate, and they had no idea what was going on. Also, I’d mistakenly upset people with incorrect word choice or incorrect facial expression [relative to cultural norms], although I didn’t know at the time that I was getting them wrong.

“Monster” is an emotive word, but because nobody knew what was going on, I felt like I was “bad.” Because why else would these things keep happening? I found strong emotions very difficult to handle and had a lot of trouble identifying emotions at all. These are all things that are explained by autism but were a mystery at the time. Mindfulness, along with better understanding, helps to lessen the impact of the “echoes” of those feelings in adulthood.

What do you think it would benefit educators to know about mindfulness in relation to autism, and perhaps especially unidentified and/or undiagnosed autism?

I think utilizing mindfulness could help build confidence in children, and help teachers respond to children who are struggling whatever the cause, e.g. from emotional problems, difficulties at home, poor academic ability or fluency, social difficulties, or poor engagement with the class.

A teacher with a strong personal mindfulness practice would likely be more able to tune in to what a child is communicating / feeling / experiencing. And if teachers feel something negative when interacting with a child, mindfulness could help them notice that feeling and explore what’s going on, both for themselves and for the child, so they can respond constructively.

It’s interesting you say “unidentified autism.” [Mindfulness] would be very important in that case, I think, because it would help teachers to be accepting of all children, regardless of temperament, ability, etc. I often felt rather hopeless at school. Maybe teachers could help create a different experience [for other autistic kids].

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This interview was lightly edited, with Julia’s permission and approval.

 

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