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Posts Tagged: marion hersh

by Marion Hersh.

Control is important to many autistic people and we do not want to give it up to professionals and experts.  I, for one, resisted formal diagnosis for this reason for many years until the need for reasonable adjustments became even more pressing.

Currently, diagnosis acts as the gate keeper to support and adjustments.  However, in practice not a lot of support is available post-diagnosis.  This is clearly wrong.  Access to support should be made much simpler and the amount of support available should be increased, in consultation with autistic adults and young people, so it is useful.  In addition, I would suggest that membership of autistic organisations should not be dependent on diagnosis.  It seems unlikely that others are going to want to gatecrash them and mechanisms for preventing this could be developed if it becomes necessary.

However, self-diagnosis requires both information and self-confidence, so it is not an option for everyone.  There is certainly a need for more information about autism to become generally available, but this will still not make self-diagnosis possible for everyone.  This is particularly true in the case of children.  In theory, a diagnosis could lead to additional information about the person and the barriers they are likely to encounter, followed by a personally tailored set of strategies and support measures to overcome them.  In reality this is rare to non-existent.

Although, like everything else, professional diagnosis is not infallible, it can be useful in the case of challenges based on other people’s stereotypes – you’re not autistic, you can’t be autistic – you can read, speak, have a job, partner, house, life, you’re too responsive, you’re not catatonic, not totally incapable (or whatever the particular stereotypes are) how can you be autistic.  Producing a formal diagnosis is much easier than having to explain away all the stereotypes.  In addition, this diagnosis can then be used to support your arguments challenging the stereotypes and showing the diversity of autistics.

The lack of support post-diagnosis is not unique to autism, as my research on the experiences of blind people in different countries found.  Symptomatic of this lack of support was being given a long cane (white stick) and presumably being expected to know how to use it, though this requires many hours of training.  However, the post-diagnosis situation for blind people is changing.  In addition, many countries have organisations of blind people controlled by blind people.  For many of my research participants going to organisations of blind people, hearing blind people there laugh and joke and seeing they had a life was a turning point.

Something similar would be possible for autism.  However, it is going to take time and resources before each town and city, possibly even each village has an autistic controlled and led organisation, which, amongst other things is able to provide information and support to those who have been newly diagnosed.

Being hit on the head!

by Marion Hersh.

You’re in a strange environment where you do not really understand what is happening and you are trying to do something that you are finding difficult.  And you are starting to feel stressed.  And people are coming up to you and hitting you on the head.  They are not hitting you very hard and it is not all the time, just every few minutes.  It is not life threatening, it is not going to cause brain damage or serious injury, but it is upsetting you.  It is starting to really, really, upset you.  And you are finding it more and more difficult to do the thing you are trying to concentrate on.  And you are starting to make mistakes and having to repeat things.  And you are becoming more and more stressed.

You try not to think about it, but all you can think about is the next time you are going to be hit.  And you are becoming more and more tense waiting for the next time. And you know it is not going to kill you or even really hurt you, but that does not help. You think about saying something, but that is difficult – you need to think what you are going to say, open your mouth, formulate the words and get them out and that is not easy to do. And all the time they are beating you on the head and it is getting more and more difficult to think.

But it can’t go on, so you force yourself to put some words together and open your mouth and force them out. You’re not sure you’ve got them quite right, as you are no longer able to think. And everyone ignores you and keeps on hitting you. So you make another big effort and repeat what you said, louder and louder. And then they say, what are you making a fuss about, no-one else here minds being hit on the head. Who are you that you should be treated differently?. And they might get upset if we stopped hitting you …  And by this time you are feeling really, really, stressed and you are screaming and jumping up and down. And they are saying get that strange person out of here, out, they can’t behave properly, we want civilised people. And they are saying … , but you are not understanding them any more, you are feeling so stressed and overwhelmed. And they push you out, so you cannot do whatever it is you were trying to do, but they still keep on hitting you …

This is what life is like for many autistic people.  Sensory overstimulation – noise, light, movement, smells, the presence of other people, physical contact, crowding … – can be totally overwhelming – and when we try to say something the reaction is often, what are you making a fuss about, no-one else is bothered?

by Marion Hersh.

For me, the horrendous situation of the overwhelming majority of autistics is part of a much wider problem. Structural discrimination and disadvantage are unfortunately embedded. Money rather than caring is the dominant ideology and the industrial-military complex has much too much power. Bureaucracy with impossible rules, assessments and forms are used as weapons to keep people from obtaining even minimal financial entitlements. Most minority groups are excluded, discriminated against and disadvantaged to a greater or lesser extent. Autistics are also members of other minority groups and therefore many of us experience multiple forms of discrimination and disadvantage.

Achieving lasting and significant improvements will require changing the structure of society, amongst other things overthrowing capitalism, patriarchy and bureaucracy. This is unfortunately not going to happen in the short term. I will therefore leave my suggestions for the more human, animal and planet centred approach to replace them for another opinion piece, and make some suggestions for some shorter-term changes.

One option (and I have no idea who came up with it first) is a universal sufficient income for everyone over sixteen (or possibly younger). It would not be means tested, capability tested or require filling in forms. Everyone would get it and it would be claimed back via taxation for people on high incomes. There could be supplements for people with additional needs, due to, for instance, disability or having several children, and a simple process to obtain them. This would give autistics and others currently living in poverty financial independence. It would also make it much easier to move into and out of employment, as you would not risk losing benefits, or work for only a few hours a week, as you would have a sufficient income.

Another and probably more difficult change, as it would require big changes in attitudes and behaviours would be the creation of large sensorily quiet areas. There would be a few smaller areas where noises of different types (smell, visual, movement and crowds, as well as auditory) would be permitted. This is analogous to the change of attitudes to smoking, which has now been banned from public buildings in many countries, with only small designated smoking areas. Imagine, for instance being able to get on a bus or train or go to a restaurant or the theatre – no people talking, no smells, no crowds, no irritating lights or visual overstimulation. People who wanted those things would be crowded into a small area where sensory disturbance was permitted. This would be well screened from the main sensory disturbance-free area to ensure that autistics and others in it were not disturbed.

Our Aims

Autistic UK campaigns in the UK and beyond to advance the interests of all autistic people and those with “related neuro-developmental conditions”.

Our Mission

Autistic UK will work to ensure that the autistic population of the UK is comprised of happy, healthy, fulfilled and empowered individuals.

Our Vision

Autistic UK envisages:- The establishment of Autistic People’s Organisations (APOs) within every local authority area in the UK

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