How Far Should You Go?
Working out how far you should go, whether other people mean what they say and how far they should go before you take offence is a nightmare so would you like this? I didn’t and my friend didn’t either.
Her support worker noticed that K, or as her parents call her, KJ, does the tip-toe walk, so familiar to autistic people so she decided to comment on it with these words:
“I see you are doing the blind person’s plod again”.
The same support worker was offended by a comment upon becoming a grandmother, made by KJ so why is it okay for her to make a similarly offensive comment regarding her walk? If you can’t take it why dish it out?
Tip-Toe through the tulips
Becoming a grandmother is a status most can hope to attain whereas KJ’s walk is attributable directly to her Asperger’s. A mobility instructor pointed out to her that she should put her heels down first, as I do, (I wear the heels of my shoes down) whereas for almost all her life she put her toes down first. This is something I was asked about when I was assessed regarding whether I, too, have Asperger’s.
While I am not there so never hear the other side of the story, the way in which things are said I don’t think I would like that comment but wouldn’t take offence at:
“I see you are tip-toeing through the tulips again”. Older people like me will recall the old song and Granny, the support worker concerned is old enough I think to at least have heard the song.
Interpretation of language
Now there are problems with interpretation of language, I fully accept that so KJ who was upset by this remark could have misinterpreted the comment but suppose we transfer it to another situation whereby a black person is trying to make their accent less pronounced (not that they should do that) and someone says:
“I see we are reverting to the black person’s talk again”. What an uproar there would be, especially in Britain where people have become very prickly.
It’s hard for everyone because people wishing to make a sarcastic comment can hide behind the guise of joking.
If I were a support worker I think I would wait to see how the land lies and would want to get to know someone pretty well first. I’d see whether they would make jokes at and laugh at themselves first and would find out if possible whether the visual impairment has been long-standing or recently acquired.
I know now that I am this ancient, I would ask what the person meant by their remark about walking in a particular way. I would try to explain this is a characteristic of autism to do the tip-toe walk and at least ask whether other blind people do this, too.
It rather spoils a relationship of any sort if a person has to follow a comment with:
“Only joking” In the case of the support worker or family member or acquaintance but this support worker is with KJ for six hours per week so ought to know by now what is likely to be triggering.
Making the right decision
KJ is in a dilemma because she doesn’t want to get rid of an excellent and practical support worker who is great at all the stuff that needs doing but neither does she want to be upset by personal remarks of a hurtful nature. You could say that she also ought to know by now whether Granny is joking but the nature of Asperger’s, coupled with the fact that neither she nor I can see body language makes this just so difficult. It makes socialising a strain and relationships a minefield.
I came up with a couple of strategies for her and hopefully, me as well and one is to remain quiet and calm but to say, in a very controlled way:
“While I will never be fortunate enough to be in your position, one day you may be unfortunate enough to be in mine” and let the silence hang in the air.
To put that in place, you must be sure the person is serious when they make these personal comments and be sure they are not joking and you must have expressed your disquiet about their continued personal comments of a hurtful nature and be absolutely confident they are not joking so it’s a bit like the song about the hole in the bucket.
Of course the other strategy is to ask that no remarks about how things are done are made unless safety is in danger and to go about stopping them in various ways such as:
“You are such a great support worker in lots of ways and so practical and helpful so would it be possible to find a better way of helping me, such as telling me to remember to walk with my heels going down first rather than my toes”.
On paper it all sounds a bit petty and silly perhaps but it just goes to show that relationships between people with and without Asperger’s are littered with pitfalls.
What if the boot is on the other foot and the person with Asperger’s makes an inappropriate remark or comment suggesting that the support worker is being begrudged something then what should happen?
It is never good to sit on a grievance like a hen sitting on an egg. Much better to ask:
“What did you mean by your remark”? In the Bible it says that the sun should never go down on your wrath. Well, likewise, a visit should never end on a grievance and all should be sorted before the front door closes on a visit. At no time should there be a reason for mulling over a past hurt for weeks or days on end without it being sorted, otherwise the grievance will fester like a splinter in a finger and an emotional “infection” of the relationship will set in and possibly ruin what has been a perfectly good relationship and in really exceptional cases could even end it.
Asking the question
It is always good to ask what the other person meant by a remark made, to calmly voice your hurt, accept and give an apology when and where due and then to forgive and not bear grudges and certainly not to hold on to upset for prolonged periods of time during which the person responsible for the unintended hurt may have no idea they caused it. It is always also good for the support workers to explain that, where and when appropriate there are problems at home, one is not feeling well on a particular day and just say:
“Whatever may be said by either one of us today may be hard to take but it’ll be for our own reasons, possibly because you can’t and don’t interpret things easily and I am feeling lousy because of personal problems at home or slightly ill health”.
As there are improvements in Asperger’s as one ages, this ought to make a person more able to shrug off a comment about which they will perseverate later or get upset about for days and also make them more careful and try even harder to rein in the worst excesses of their autistic traits. Maybe they will choose to read or try to talk less when out or not talk about their favourite subjects and if they fail and there’s a snappy comment at least they will know why. In the case of a blind person with autism, they simply cannot and won’t necessarily pick up on the pale face and the tired eyes from no sleep or illness and if yawning is a common occurrence when visiting, this may not be seen as an extra sign of extra troubles.
Fear of upsetting others
Those of us who know we have this combination know we are sometimes wearing, know we are “hard work”, know we talk at, rather than to people but we also know we are honest, will try to do our best and are capable of being considerate, kind and accommodating so the sooner a grievance is dealt with the better and possibly the sooner personal remarks about a person’s characteristics such as how they walk, stop, the better and if honesty can be mixed with as much sensitivity on both sides then the better for us all because, while a support worker can choose to give up a client it’s not so easy for a client to voice hurt and upset either because of alexithymia or because of fear of losing an otherwise good or excellent support worker and throwing the baby out with the bath water, one can go on hurting as can a support worker who thinks they have to walk on egg shells, thinks they are being begrudged something previously never begrudged and offered in good faith and the relationships change or are never cordial and sometimes even end as KJ often wonders if she should make happen with Granny.