Nel – an amazing diagnosis.

As friends and family will know, Nel is a funny little thing. She hates social situations, shies away from parties or family gatherings, has great difficulty making friends, found school absolute hell, cannot speak on the phone and prefers to spend all her time drawing her amazing anime art. She has recently been seeing a psychologist to try and help her over some of her phobias and this astute lady arranged for a specialist to come from Newcastle and assess her.

This specialist, the psychologist, Nel and I spent an hour and a half going through Nel’s childhood and school days, as well as her current situation and then we went through the diagnostic criteria together to decide if they applied to her. The list was something like this:

1.Severe impairment in reciprocal social interaction
(at least two of the following)
(a) inability to interact with peers
(b) lack of desire to interact with peers
(c) lack of appreciation of social cues
(d) socially and emotionally inappropriate behavior

2.All-absorbing narrow interest
(at least one of the following)
(a) exclusion of other activities
(b) repetitive adherence
(c) more rote than meaning

3.Imposition of routines and interests
(at least one of the following)
(a) on self, in aspects of life
(b) on others

4.Speech and language problems
(at least three of the following)
(a) delayed development
(b) superficially perfect expressive language
(c) formal, pedantic language
(d) odd prosody, peculiar voice characteristics
(e) impairment of comprehension including misinterpretations of literal/implied meanings

5.Non-verbal communication problems
(at least one of the following)
(a) limited use of gestures
(b) clumsy/gauche body language
(c) limited facial expression
(d) inappropriate expression
(e) peculiar, stiff gaze

6.Motor clumsiness: poor performance on neurodevelopmental examination

(All six criteria must be met for confirmation of diagnosis.)

It was decided that all but one on the list which meant that the specialist could definitely diagnose her.

She has high-functioning autism!

Our predominant emotion is relief. This diagnosis explains so much, and reassures Nel that she isn’t some sort of freak, and me that I haven’t been a bad mother just because I’ve never been able to work out how her mind works. So much of her childhood behaviour is explained. So many her strange little ways now, including her need for constant reassurance and the routine of spending time with me each evening. Secondary to this relief, for me, came disappointment that she wasn’t diagnosed as a child, which may have resulted in her getting help and making school less of a nightmare for her. But then I thought about that and decided that maybe we’d have labelled her and fallen in to the trap of seeing only the label and not the person. Likewise, she my not have achieved what she has because she might have hidden behind the label. So I came to the conclusion that I wouldn’t bemoan the late diagnosis. We’ve managed to get through the last 18.5 years without it, and as it turns out, much of what I’ve done over the years has been the right thing to do. (For example: I’ve always kept to strict routine, always explained to the children exactly what is happening and when and kept them informed as anything has changed.)

We are now at the beginning of a journey to learn about each other. As much as we, her family and friends have to learn about Nel and how she sees the world, she has to learn about us. Both parties have always assumed we think the same and understand the world the same. But we don’t!

What we need mainly right now, is to learn about our differences so that we can best act to bridge them and enable Nel to feel secure in her world. We need to tweak our household rules and routines to accommodate the things that cause her the most anxiety, though in general she is fairly secure at home and I know she is very secure with me, and with mum.

My intention is to add comments to this post as we discover more, but I wanted to get this post up now so that family and friends can share the news an those that spend any time with her can find out what they can do to help her. (For example she is going abroad for a week soon and it would make it easier for her if everyone knew just how difficult she finds socialising and make allowances.)

I have yet to read through all the websites that have been recommended but if anyone wants a place to start, try here. The book we have been recommended to get is How to be yourself in a world that is different which we have on order.

If I was proud of my daughter before, I am even more so now – she is the lovely person she is despite finding the world and its human inhabitants so confusing all this time.

EDIT: Tom, a City friend, used an excellent analogy to help me understand something of the problems faced and has kindly said I can share it with you:

Recognising your physical self in a mirror is a learned skill. As babies we had to acquire this skill by experience, but after a while the process of recognition became ‘second nature’ to us; and we forget that there was ever any skill involved. Once this is the case, we came to think – erroneously – that self-recognition in a mirror is automatic or inbuilt.

It is only when we see an image of a group of people including ourselves on a CCTV monitor, that we suddenly become aware that we no longer have any immediate self-recognition. We then have to re-acquire self-recognition by means of explicit cognition; “the bald, fat guy with glasses and an inane grin’. We may indeed have check our tentative recognition by waving our hand; or even by pointing to the place where we believe the CCTV camera to be.

An equivalent skill is learned by us as babies to recognise our own social identity as reflected in the inter-actions and responses of those we meet. When we walk into a room, or presence is acknowledged by a whole series of physical signs in the people already there ; especially eye expressions, head movements, physical posture. Eventually, our ability to understand ourselves as present in the reactions of others becomes ‘second nature’. If we were to find our presence entirely unacknowledged – if everyone ‘looked right through us’ we would find it extemely disconcerting and stressful. We might wave, point or prod in order to extract a response that acknowledges our existence.

People with autism can read the same social signs as non-autists; but this reading does not easily translated into becoming ‘second nature’. Instead they may have to reacquire their own identity afresh by explicit cognition each time they enter into a new social environment. They may well undertake actions that are equivalent to ‘prodding’ or ‘waving’. Eventually, they may develop a set of familiar ‘signposts’ that they find from experience allow them a shortcut to their identity. It is as though they are trying to shave/make themselves up by means of an image on a CCTV screen, when everyone else has a mirror. Moreover, it can mean that they experience a social environment as dangerously unstable or underdetemined, if their familiar signposts happen to be absent or only partially presented.

This creates a paradox; persons with autism can often mimic the sort of social interaction that non-autists have; and so they can appear to be ‘normal’. But they may actually be relying on social signs in a completely different way. For example, it has been shown that persons with autism tend to ‘read’ facial expression in terms of mouth movements, where non-autists tend to rely on eye movements. And this different way will always imply much greater effort both in acquiring self-identity through explicit cognition, and in maintaining it over a prolonged period; whereas the self-recognition of non-autists (being second nature) requires little of no effort.

To make a different analogy; it is as though persons with autism are riding unicycles in a world of bicycles; they may appear to be doing exaclty what everyone else is; but they will be doing it in a different way, in a way that requires more effort to maintain; and where they are constantly aware of an underlying instability or uncertainty, that other people do not feel.

The mirror/CCTV bit struck a chord with me, and Nel particularly liked the unicycle/bicycle analogy. Nel does indeed pick up my meaning if I exaggerate my mouth expression – a cartoon style pout or grin. She also needs me to specifically greet her verbally and to say goodbye/goodnight when leaving her company. However eye contact is a no-no, as is trying to constantly engage her in conversation. These things I sort of knew before – but now I have an explanation for them 🙂

Comments

  1. Pat Janaway says

    Although it’s nice to have a name for how Nel finds the world, like you say, Nel is still the Nel you have always known and loved! I’m sure you wouldn’t change that!
    I hope the diagnosis and any help she is offered, starts to make life easier for her. Please send her all our Love. (and to you, Billy and Stephen too) xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

  2. Yes, exactly Aunty Pat. We have even had a few laughs over it and there are several things about Nel as a result of this condition that we actually prefer. 🙂
    Thank you, and lots of love to you all too. X

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