Labels

I've met people who do not want to get themselves, or a child in their care, a diagnosis because they don't want the stigma of a label.  My responses to that are:

·      These days it's less stigma and more cachet than it used to be, and I hope to reduce that stigma further.

·      Lack of diagnosis results in lack of access to available support and training.

·      Lack of early support and training leads to having to learn many things by trial and error that often results in poorer study and work outcomes, and broken relationships.

·      Lack of support and training can leave the autistic person vulnerable to abuse, because we are less likely to see the red flags, and have no or very few psychological tools, techniques, or other resources to deal with it when it comes (and it will come).  Meanwhile, abusive people (whether they intend to abuse, or do it due to lack of thought, care, and consideration) can almost smell our vulnerability; we become proverbial sitting ducks.

Before I met Other Half, I had been in a relationship that was very unhealthy.  I had had no training in recognising the red flags, and no knowledge of how to (successfully) ‘push back’ or extricate myself.

I stayed in that relationship for far, far longer than I ever should have, while always hoping for rescue…but I didn’t know what form that rescue could, would, or should take, and didn’t recognise it when it was offered.  I also didn't know know how to exercise the rights and choices I thought I still had, never mind the ones I thought were no longer available.

This, by the way, is what I found myself sobbing about when I read the paper I mentioned in my “My reasons for a diagnosis” post of 8 January 2021. (Don't worry, dear reader, Other Half knows all about that relationship.)

Now, I'm not saying that one has to be autistic to be caught in a bad relationship - there are far too many bad relationships around for that to be the case - just that we are particularly vulnerable.

·      It is the choice of the autistic person (or their parent / guardian / carer) whether they declare their diagnosis.  No-one else has to know – no-one gets stamped with an obvious visible sign upon diagnosis.  However, their difficulties may have made them visible already anyway.

Communication breakdown

Part of the definition of ASD that you may see includes “difficulties with social communication and interaction”.  You might be wondering if the friend you have in mind therefore qualifies – they seem so competent with talking to people, managing to hold great conversations, even being witty (!), and delighting in events with many guests they can interact with.

If you ask them though, you might be surprised at what is going on for them in their minds.  Here are some experiences I am aware of for myself and others:

·       Despite all the things they try, they never feel that others really ‘get them’.  They will often retell the same thing in slightly different ways in the hope that they will be better understood.  Oh, happy day when they meet someone who seems to get them first go!

·       They talk to many people because they are intensely interested in working out how others tick.  Often this will be for the purposes of incorporating what they learn into their own behaviour arsenal so that they do not seem so "weird" to others.  They may not be aware that that is what they are doing because they have been doing it for so long that it has become an automatic, subconscious behaviour.

·       They talk for extended periods of time almost without a break, or letting the other party get a word in edgewise, to one or more people.  They do this because they don’t know the signs to watch for that would tell them that their audience is bored, but is too polite to say so.

If you are a member of the bored audience, and know the person well, consider telling them privately that they can be verbose to the point of being boring.  But please, please do not leave it at that!  Give them some clues of things to look for in others, otherwise your autistic friend will likely (a) repeat the same verbosity at another time; and (b) may beat themselves up that they still don’t ‘get it’ or ‘get other people’ despite their best efforts. (a) is painful for you; (b) is painful for your friend.

If you can, it's also helpful if you can give them pointers on what to do instead - the "try X", not just "stop doing Y" idea.

Analysis

If asked, many autists will tell you that they hyper-analyse.  Everything.  Academic subjects, sports, special interest topics, spatial orientation of objects, light and shade, colour, sound, the line of ants travelling from the back door, through the kitchen, and out the dining room window, patterns in the carpet, patterns in language.  Everything.

But if there is one thing probably more likely than all the rest to be hyper-analysed, it is social interactions.  I will hyper-analyse conversations I had anywhere between five minutes and many years ago, and contemplate for weeks what I will talk about in my next conversation with certain people.  My Other Half rehearses, and analyses, expected conversations months in advance (as well as those in the recent and distant past, of course).

Please understand that when we do this about our interactions with you, it is not you, yourself whom we are analysing (if anyone it is ourselves).  No, generally we are analysing the interaction to see if there were any nuances we missed, ways that we could have been misinterpreted, ways that we might have accidentally offended you, or ways in which we could have responded better or differently (based on your reactions).  We are probing our own understanding of the interaction, and by extension, our understanding of you.

You could say that we are trying to think our way into your shoes, your point of view.

But it is not you we are analysing...though I understand if sometimes it feels that way for you.

The elephant in the room

Let’s address the elephant in the room – the causes of autism.  At this point in time (February 2021), there is not known to be any single defining factor that causes the brains of some people to wire in a way that absolutely will create the behaviours and experiences encompassed by the term ‘autism’. 

Unlike low folic acid increasing the chances of neural tube defects in the unborn, what a woman eats or does not eat in the months leading up to pregnancy or birth does not seem to have any bearing on the chances of a child being autistic.  However, it is thought that there is a genetic link – autism does seem to run in families, much like motor-neurone disease.  And like motor-neurone disease, it also appears ‘spontaneously’.

Fortunately, unlike motor-neurone disease, it is not fatal.  Nobody dies ‘from’, or is potentially permanently harmed or disfigured by, autism itself (although many suffer from the way others treat them due to their being autistic, or from self-harming behaviours used to cope with a difficult world).

The same cannot be said of measles, polio, whooping cough, rubella, smallpox, tetanus, or any number of other diseases that have been eradicated from most regions of the world.  The prevalence of these diseases has decreased to the point where many people cannot remember, or have not met, one of those negatively affected by these diseases.

How did we get to a world where these diseases are uncommon?

Vaccinations.

Many vaccinations are given to young children at ages when certain developmental milestones may normally be observed.  These milestone ages may include the points at which children typically start speaking, walking, and learning to interact with other people outside their family.

When autistic children do not display achievement of these milestones at the typical age, or in the typical manner, blame is often apportioned to the most recent unusual event in that child’s life, which is often a relatively recent vaccination.  However, this confuses concurrent events (those happening around the same time) with causal events (those causing something else).

I was born in the mid-1970s.  For various reasons, I did not receive vaccinations against some diseases (note: my parents were not anti-vaccination) and so I ended up having the ‘real deal’ when it came to chicken pox and measles.

I am, and always was, autistic despite a lack of vaccination against these diseases.  So obviously, one does not need a vaccine to cause autism, nor does one need to get one of these diseases to be autistic.

But even if vaccines did cause autism and the 'real deal' didn't, why would you prefer your child to potentially die, be disfigured, or become permanently disabled, rather than possibly turning out to be someone like I am – an articulate, married, gainfully-employed engineer?

Note that I am not saying that those who are disfigured or disabled are inferior or invaluable, just that most people wouldn't actively wish that outcome of disease on anyone.  I'm also not saying that the non-verbal, single, or unemployed have diminished intrinsic value.  However, I am aware that some people hear the word 'autistic' applied to a child and immediately envisage that the child will be non-verbal, never have a romantic partner, and be permanently unemployed, hence why I started this blog in the first place.

“What would happen if the autism gene was eliminated from the gene pool? You would have a bunch of people standing around in a cave, chatting and socializing and not getting anything done.” – Dr Temple Grandin