How I confused being on the autism spectrum with being highly sensitive.

The personal story part

I’ll start with a story, then come to theory and philosophising.

A hippie summer in Brighton

In autumn 2011 I was spending time in a quaint, colourfully hand-decorated fairytale house with a picturesque mountain slope garden in Brighton, UK. An enigmatic hippie-nurse with three grown up kids featuring the most individualistic, creative and exotic life trajectories owned it.

My friend was subletting a room there. One day, he showed me a book on the living room shelf: The Highly Sensitive Person, by Elaine Aron (basic info on her website).

I read it and thought, yes of course that matches me. It wasn’t the biggest revelation ever, still I read some of her follow-up books, on career and relationships for highly sensitive people (HSPs). They made sense. Although I did feel they were somehow “incomplete”, in a vague sense, for describing me.

The transatlantic aspie

Years later, via many coincidences, some of which required transatlantic travel and a therapist taking my family history, I also figured out that reading all signs, there are a few people with rather obvious features of Asperger’s / High Functioning Autism in my family, and I’m one of them – despite having been able to mask it, more or less successfully (I did have two people asking me directly whether I’m autistic – at a time when I didn’t really understand the concept, and two others later saying they thought so when they first met me).

Pathologising sensitive people?

Reflecting on it, I realise I had not been too interested in (high-functioning) autism even when it was brought up because – not having researched any of it in depth – I assumed that it was just a label used to pathologise sensitive and introverted (and quirky) people; essentially HSPs and those who are otherwise more sensitive than the “norm”, in ways that the norm can’t deal with.

So even if people asked me whether I’m perhaps on the spectrum, I didn’t give it much thought assuming they just insisted on seeing my introverted, sensitive and creative-eccentric ways, combined with – yes – being easily stressed by social situations, as a disease.

I had certainly had enough of that and was not in need of more.

Sensitivity levels and styles

However, in my next round of research I realised that – yes – actually first-person, or empathic (rather than clinical) third-person accounts of what people with Asperger’s Syndrome experience in daily life actually seem to capture – a crazy amount of the quirks that I know make me different from most people. And a crazy amount of sensitivities that most people don’t understand – which go beyond the more general and (comparatively) very manageable HSP sensitivities.

(By comparatively manageable I mean, if you are an HSP and can’t stand the noise level at parties – well, nobody really forces you to go there or to stay for more than an hour or two. If you’re on the spectrum and – occasionally, or always – are so sensitive to commotion, ugly lights, or specific noises that you can’t e.g. enter malls without feeling sick, but you do occasionally need something that you can’t buy in your tiny cosy corner store, that does create problems that are harder to deal with, I’d say. And sometimes even the corner store may be overwhelming, because you have to talk to the shop assistant, which on some days feels like your skin being scrubbed down with a pot scrubber.)

So, after some research, I kind of accepted that this is actually a useful – more precise – description, and I could benefit from advice (and help; although in my areas that’s not available) targeted at people with Asperger’s / HFA more than from resources for HSPs (or at least, in addition to them).

And at the moment I’m trying to make use of this information without getting put off by the pathologising, talking-down-to-you vibe that can be part of literature and discourse on autism (and anything in the field of psychiatry, really – otherwise I’d probably had made use of that info much sooner). Thankfully, I realise now that there are plenty of resources that don’t do that, while still being scientifically informative.

(Talking mostly about resources by aspies themselves, and Tony Attwood’s books, I’m sure there’s more.)

It’s been a rough trip though, still.

I’m not the only one who is confused

I realised though that I’m not the only one who is confused/in doubt about the relationship between being highly sensitive and being autistic.

.

The facts / theory part

Elaine Aron’s view

A few days ago I decided to google “HSP or autistic” and came up with Elaine Aron’s (the HSP guru’s) article on her blog.

(Here’s her article, if you’re interested “How Does Sensitivity Differ from … the “Autistic Spectrum”.)

While she makes many important points, and actually describes cases like mine – where someone is assumed to be “just” sensitive, but is in fact autistic (“abnormal”, as she gracefully calls it), there are some things which seem just wrong and things she seems unaware of (like, masking autism, especially by girls – though that wasn’t widely known at the time the article was written).

Apart from that, the article seems to be written without the thought that adult autistic people might read it and have to deal with the vocabulary used.

Life experiences

In the follow-up post I’ll try to answer the same question based less on theory and more on life experience.

One part of that life experience is being both highly sensitive and on the autism spectrum (and having had to figure that slowly, as described above).

Another is perhaps my family life: my mother is highly sensitive, but clearly not on the autism spectrum; whereas my dad is on the spectrum, but not necessarily a highly sensitive person in Aron’s sense. My brother is neither. I’m both.

Take that.

Stay tuned, or if interested check out related posts on autism and empaths and such.

CONTINUE TO PART 2

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