It’s been a little over 19 months since my autism diagnosis. Since 19 is my lucky number, I thought I would write a brief update post. Initially I considered writing about the changes that have happened in my life now that it has been over a year and a half since receiving my diagnosis, but I’m not sure how helpful or relevant this would be to others, plus it’s quite personal and convoluted.
Instead, I thought I would write more generally on what I have learnt about autism, autistic people and the autism world. Autism has become a super intense special interest of mine over the past 19 months and I thought I would try to condense down some information into a few points.
I can find this quite tricky to do, partly because I’m very much in the midst of it all (I’m currently working on researching and writing a book) which can make it hard to see the wood for the trees sometimes. I can also find it hard to consciously/voluntarily access all the information I’ve accumulated, especially in summarised form, despite it surely being stored somewhere in my brain. I’m very much still in the process of building up an overarching framework of understanding. And, for me, this needs to be done from the ground up; building on thousands of little detailed pieces to form some sort of coherent all-encompassing whole – or at least that’s the aim.
That said, here are probably the top 5 things I’ve learnt about autism over the past 19 months or so:
- Autism is not bizarre, mysterious or unknowable. In fact, it encompasses an extremely logical, understandable and very human set of ways and responses which are based on a different way of sensing and perceiving the world. Understanding the “whys” of autism (at least at the psychological/behavioural level) simply requires getting to know and having empathy for the differing internal experience of an autistic person.
- Autism is not inherently a medical “disorder”, it has been socially constructed as such. Nor is it inherently problematic, though the context we live in (i.e. the non-autistic world) can often make it challenging. Nor is autism an “epidemic”. It has a strong genetic component with autistic traits having existed throughout history, being widely distributed across the population and likely holding considerable evolutionary value for our species.
- A person’s autism cannot easily be measured, nor should this be an aim. “How autistic” someone is – i.e. their “functioning” level – is fluctuating, subjective, kind of arbitrary and often misleading. Above all, intelligence does not correlate with the strength of autism or with “functioning”. A so-called “severely” autistic, “low-functioning” individual can have a high IQ (if they have a low IQ then they may have an intellectual disability and this is not autism, despite the fact the two do often co-occur) which is being camouflaged by sensory-perceptual and communication difficulties.
- Most definitions and understandings of autism focus on external observable criteria based around social communication and restricted, repetitive behaviours (usually framed as deficits, as in the “triad of impairments”). In reality, it is more accurate, useful and respectful to view autism as being fundamentally about information processing issues stemming from sensory perceptual differences. Of course, a whole host of traits across diverse domains then spring from this, but “sensory” really is core to explaining almost everything about autism.
- What can look like hypo-sensitivity is usually the result of hyper-sensitivity. Being autistic means having a more intense perception of the world. Contrary to popular myths, it does not mean being cut off from the world, being immune, insensitive, unfeeling, uncaring, unknowing. It actually means we are a lot more sensitive than most to our environment and to the people in it. The impression we can give of being shut off or out is because we see, hear, feel and sense too much and need to self-protect as a result.
I’ve also learned a bit about other autistic people. Here are perhaps the top 3 things:
- Every autistic is different. When you’ve met one autistic… you’ve met one autistic. This phrase (first coined by Stephen Shore, I think) has become a bit of a cliché. But it is so true and sweeping stereotypes still have a strong hold, so it’s worth repeating (and keep on repeating) until people’s notions about autism become more nuanced. We are as different from one another as neurotypical people are. At the same time, just as NTs share certain similarities (based on their shared operating system), so too do autistics.
- We can all be at very different places in terms of our understanding of, identification with and feelings about autism/being autistic. Some of us identify very strongly, demonstrating acceptance, even pride, and may feel passionate about the autistic community and promoting autistic rights. Others may harbour negative feelings about being autistic. And there are plenty of people who are somewhere in-between, whether exhibiting ambivalence, disinterest, passive acceptance, or whatever. Being autistic does not guarantee that you know a lot about autism, that you identify with the label or are interested in autism advocacy. These things have a lot to do with a person’s experiences, personality, interests, circumstances, levels of self-awareness, and so on. The degree of identification can also very easily change throughout a person’s life.
- Being autistic does not define your personality. Autism does not negate the possibility of any personality trait in a person. It is possible to be extroverted and autistic, even to be very social, spontaneous or highly empathetic and autistic. We have stereotypes for a reason – there are plenty of introverted, solitary and rigid autistic people, and there clearly exists an important pattern between autism and certain personality traits and preferences. But our understanding should not stop here. Anything is possible. Autism is not equivalent to personality, although it certainly has an important influence in shaping it. On a related note, autistics are perhaps more likely to exhibit opposite extremes in behaviour and personality, in relation to one another and sometimes within the same person at different times. Whereas neurotypicals are more likely to cluster around the middle of a spectrum for a given personality trait, an autistic person is more likely to be at one extreme or the other. This reinforces point 1 about every autistic being different.
Finally, I’ve become increasingly familiar with the autism community and disability rights and politics more generally. The top 5 things I’ve learned:
- There’s a lot of misinformation and prejudice about autism out there. Before I’d started to educate myself on these issues, I’d (wrongly) assumed that things might have progressed further forward than they have. For sure, we’ve made huge improvements, but there’s still a long way to go before we have true understanding, acceptance and appreciation, and not simple awareness (which in itself we still haven’t fully achieved).
- There is also a lot of fighting and political stuff between the various groups (autistic people, parents, professionals, general public) and perspectives (e.g. cure vs. acceptance) that make up the autism world, and sometimes even within the same groups. Autism is an emotionally-charged topic for a lot of people and can evoke a lot of feelings, a strong sense of urgency and plenty of competitive and desperate behaviour.
- The experts don’t know it all. In fact, they have been – and still are – wrong (or at least in the dark) about a lot of things. There’s actually a lot we still don’t know about autism (especially when it comes to basic causes and neurological mechanisms). It is hugely complicated and we should be humble enough to admit when we don’t know and to let go of theories that don’t match up with science or lived experience.
- Autistic voices are out there (especially online) and want to be heard. Unfortunately, all too often, autistic people are overlooked as the sources of knowledge, insight and “experts by experience” that we are. We are often excluded from the very discussions we should be central to – because they are about us! “Nothing about us without us” is a popular saying in the self-advocacy movement.
- Autistic connection, community and culture are important things. There should be more opportunity for us to develop and engage in these things, both online and in real life. It can often be a lot easier for us to feel understood, to feel at ease and comfortable with ourselves and to feel a sense of belonging with others on the spectrum. But… at the same time, we shouldn’t assume that autistic people will get on just because we are all autistic. Just as we don’t expect all NT people to get on by virtue of being NT. There is so much more to a person than their autism/non-autism. Two autistic people may not gel for a whole host of reasons, just as with any people anywhere. We should be mindful of this and remain open to making connections across the neuro divide. However, post-diagnosis especially, it is clearly understandable if an autistic person wants to focus on getting involved with other autistics – especially if they’re socially isolated, or have had a lot of bad experiences in the neurotypical world. It can be a safe place to start (and to stay for good if that’s what suits them).