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Appearances and the Passport for individual autism support

longman

This is something that puzzles me greatly.

One aspect of autistic spectrum is your appearance - how you look to others. This is very variable between individuals and subtler in nature. There's no autism look as readily recognisable as there is for Down's Syndrome. But there is an appearances factor, and it does create major barriers for people on the spectrum.

The "Passport to individual autism support" is a two sided A4 leaflet that folds twice to provide 6 pages of information, and can be carried and shown to people to help explain needs. The present format has been around about two years. It covers things like sensory reactions, abilities that may be affected, difficulties, when upset and how best to help, etc., relying on tick boxes. It is a useful facility, and hopefully many people find it helps.

But - there is one aspect largely missing - appearances. Under "when I get upset, I may" there are options for make noises or flap my hands, but there is very little else about how people might appear to others.

Obviously on a 6-page leaflet there are limits how much information can be provided, and the leaflet has to encourage people to look at it, and benefit from the knowledge. However I think something important has been missed out so, notwithstanding the clutter factor, I feel it important to raise it

What I'm going to try to do here is list some of the "appearances" I think are important, which are missing not only from the passport, but from a lot of other autism information given to professionals. I'll then take up some key ones in "replies" of my own making.

Eye contact

facial expression

tics, and other odd movements

clothing and cleanliness

presence in a place in response to interests

looking pre-occupied or lost

looking out of it, as if drugged or drunk

walking oddly

Appearing odd gets people on the spectrum into difficulties. Surely that's why having a passport is a good idea. Appearances can prevent you getting service, or being served courteously. It can get you undue attention from police, security and other officials. It may make it harder to seek help from others. It can greatly exacerbate a sense of isolation.

  • Hello all there is a card you can get to keep with you at all times, you can get one from this website cost £2.50 i think that might be better 

  • This is another manifestation of autistic spectrum difficulties that might give rise to the need for a passport, but isn't in the present passport.

    A particular problem is fading or phasing out. A lot of people on the spectrum report this difficulty but it doesn't get taken seriously. Some people report it to their GPs out of concern that it is epilepsy but it doesn't correspond to tests for epilepsy.

    What seems to happen is that when there is a degree of sensory overload which the individual cannot filter or ignore, the response is to shut down altogether. For a period, short or long, they appear to be no longer in control of themselves.

    Something similar happens to many people in social situations like parties, where they get so tired or stressed they dossociate from their surroundings and may appear to others to be drunk or on drugs.

    Such circumstances are likely to get someone at least challenged by people in authority - so having a "passport" would help, but it would help more if the passport better explained this particular phenomenon.

    The passport addresses this to some extent under "When I get upset, I may" - which includes "become passive, possibly non-verbal and may appear to go to sleep (shutdown)" - but that's very specific to one circumstance.

    There are manifestations which appear more like under the influence of alcohol or drugs - which I don't think the above statement informs.

    Appearances factors are important, and may be a worry to parents that these things can increase vulnerability or get young people into difficulties with the law, it surely needs the creation of a specialised "passport" in its own right, or an additional page in the existing passport if that is practical.

    I wondered how others felt about this.....

  • Many people on the spectrum become so absorbed in their special interests, they are oblivious to how it might look to others.

    A fascination with makes of cars, or aspects of cars like number plates, or engine types, might cause someone on the spectrum to hang around parked cars. A fascination with trains might cause someone to hang around in stations, but not quite in the same way as train spotters. A fascination with computer accessories or types of laptops might cause someone on the spectrum to hang around suspiciously in department stores or product outlets.

    Some interests might lead to hanging around in inappropriate places, appearing to have criminal intent, when actually not so.

    Hence one reason someone on the spectrum might need the "passport" is if they get challenged by authority or the police over where they are. Information like this needs to be in the passport, or in something else they can carry.

  • Eye contact and facial expression are the two most important, but completely missing from a lot of information provided to the public, or health professionals and other services.

    The medical profession is a bit obsessed with "gaze aversion" - very conspicuously avoiding looking at other people. But because NTs make such a fuss, many people adapt to looking approximately at other people's faces, even though often not making proper eye contact.

    Even so, because of the difficulty many people on the spectrum have of making calm unobtrusive eye contact, they appear to be shifting gaze a lot.

    The police, and many other security workers, are "trained" to look for things like "shifty eyes" as an indication of criminal intent. It is one of the ways people on the spectrum can get into difficulties with the law.

    If then placed in a situation where officials have to ask them questions, often worsened by the stress of the situation, a person on the spectrum may not be able to respond properly to someone asking them to "look me in the eye when I'm speaking to you". Some people on the spectrum, when asked to pay attention, show an ear conspicuously. Such things annoy officials.

    So you would think that somewhere in a "passport to individual autism support" there would be something about eye contact difficulties - not least to alert the police to the fact that can be associated with autism rather than criminal intent.

    The other issue related to this is blank or neutral facial expression, or fixed facial expression (sad, angry) in some people on the spectrum. Less obvious is the problem of not being able to form the right facial expression to back up what you are trying to say. NTs, particularly officials, pick up on this as intention to mislead, flippancy, being uncooperative, being rude.

    It can prevent you getting service. Facial expression alone may lead someone at a recption desk to make unwarranted assumptions that you might not be entitled to civility.

    So you would think this difficulty would feaure in a Passport to individual autism support? .....no....nothing there.