Autism: Please don’t touch…my Life!

After reading last week’s article on sensory overload, I hope that you have gained a better understanding of the stress that people with autism have to deal with. I can imagine that many neurotypical people will find it difficult to even imagine. So how do autistic people try to deal with this stress? How can they try and minimise its impact in their daily lives? I guess even “normal” people will have to deal with this problem to a certain extent. So let me try and explain how we do it.

For me, personally, the barrage of sensory stimuli is something that worries me because it is incalculable. I am so overwhelmed by the sheer force of the sensory input that I find it extremely difficult to distinguish important from negligible data. This makes me extremely unsure about how to think and react. In order to function properly, I need to create a safe environment – but how? Continue reading

Posted in Autism out of the Box, Miscellaneous, Perception | Tagged , , , | Leave a comment

Autism: Just like living in a movie!

Up to now, I have barely touched upon a very important aspect of autism: overstimulation or overload. The large amount of feedback and questions about this I have received goes to show just how important this subject really is, for myself as well as for neurotypical people. It is not easy to describe what an oncoming overload feels like, whether you even recognize the onset and how it feels when it happens. Let me therefore make it quite clear that the following description is highly individual and only reflects my own personal experience. It does NOT necessarily follow that other people on the autism spectrum have the same or even a similar experience.

It is really hard for me to describe something to you that is part of my everyday experience. I had to give a great deal of thought as to how to best describe the building up of a sensory overload in a way that a neurotypical person can understand.

I have repeatedly made reference to the barrage of sensory impression that a person with autism has to deal with on a daily basis. But not every overstimulation suddenly culminates in a sensory overload. The process unfolds in phases, which I will try to describe in the following. Continue reading

Posted in Autism out of the Box, Perception | Tagged , , , , , | Leave a comment

Autismus does not equal Autism

I began to use twitter around the end of October 2010. A bit of a miracle really, because up to that point, I had seen twitter as nothing more than a means to produce some inane background noise. I had taken small steps in the beginning, but since I really did want to know what the world thinks about autism, I started to look at tweets about autism and to write them down. And before long, my focus had extended beyond the German sphere to the views of the English-speaking world. And what can I say – I was shocked how differently the subject is being treated in both regions! I came to realize that in America, people tick differently when it comes to autism. I would like to elaborate on those differences in the following article.

Autismus  – The German attitude:

You can put the German tweeter’s attitude towards autism in a nutshell. They consist largely of links to articles about autism in the media, for instance to a rerun of a documentary on autism, a newspaper article or news about the small number of more or less famous people with autism. People do comment on the tweets and those comments are by no means only positive; in fact, there are quite a few critical remarks posted by people with autism. But still, twitter is mainly the means to spread the news; the more interesting and in-depth discussions tend to take place in the various blogs, forums and website commentaries. But twitter is an excellent medium for the distribution of the latest scientific findings, which will then looked at in more detail on the specialized platforms.

Apart from this, of course, you tend to find many tweets that contain the word “autism” in one sense or another. And of course, autistic people tend to join the conversation. But as the German community is comparatively small, you do not as a rule find endless variations of the same bit of news and it is relatively easy to keep track of the subjects. And luckily, the quacks have not really cottoned on to the possibility of exploiting autism via twitter. There are very few bogus offers! Likewise, there are rather few pejorative uses of the term autism around. And if anyone does try to misuse the term, it won’t take long for the autistic community to be on his case! If you want to get a feel for just how pleasant an environment German twitter really is in this respect, try a hash tag search for “Autist”. Tweets that use the word  “Autist” as an insult tend to come from the Benelux states rather than from Germany. It’s very sad that our neighbours find our condition so funny.

Autism – The Anglo-American reception:

Things are very different, however, in the English-speaking world. First off, you find a plethora of fundraising tweets. You quickly get the feeling that just about every American is collecting money for some autism charity. But to what end? They ostensibly collect for “autism awareness” – and there is a movement by that name that by and large aims at making the condition better known to the public. But while I initially thought that the money was going towards educating the public about the autistic spectrum, its main goal appears to be just what it says: Making neurotypical people aware that there are people with autism. Which, for me at least, begs the question as to whether you really need to raise millions of US dollars just for that? Yet lately, I have noticed a slight shift from just raising awareness to providing actual information. I think that that makes far more sense and should had been done from the start. It is not enough to tell the people that autism exists; you have to explain what exactly it entails – and what it means to the people with autism. This is the only way to avoid the formation of stereotypes that can only be got rid of with much difficulty later!

When talking about autism, you soon notice a number of buzzwords. Generally, the United States tends to talk about autism as an ‘epidemic”. There is mounting concern about the steadily rising number of diagnoses, which leads some to talk about a national health crisis. Which is ironic, as autism is usually not even covered by American healthcare, forcing the people concerned and their relatives to pay for each and every treatment themselves. It is still a long road toward recognition by the American social security system. In the same vein, the news media mostly talk about “fighting autism”. It may not sound odd in the English language, but many Germans with autism are rather offended hearing that their condition needs to be “fought”. Call me hypersensitive but when you hear such rhetoric, you quickly leap to the conclusion that it is really you they mean to fight against. Clearly, there is a general lack of “awareness” that autism as such is not necessarily an evil that has to be fought.

“Autism speaks” even goes a step further. This huge US-American foundation ostensibly works for autism awareness, but if you take a look behind the scenes, you will soon find that non-autistic people, and only those, run it. It is a mystery to myself and many other autistic people as to what these people are attempting to achieve, when they do not include us in their organisation. Several of their advertising campaigns are met with blank incomprehension by the people of the autistic spectrum. Claims that autism kills your family, destroys your relationships and your life only serve to demonize the autistic condition and with that, you as a person. Considering that the purported goal of this organization is “autism awareness”, it is no wonder then that so much is going wrong. But the organisation goes even further: The do not only want to fight autism, they want to “heal”

it. A huge amount of money is spent on the optimization of prenatal diagnostics. In other words, to recognize autism in time to nip it in the bud and save the families a lot of grief. Well, I for my part am happy to be alive and I do not understand why people with autism should be denied the right to be born and to live!

But let’s say that you lack the financial means to concentrate on the proper research on autism cures and prevention. Well; there are other avenues open to you: How about inventing a magical cure, or a special diet? The gluten-free diet is very popular in this context although, you guessed it, it is mostly benefits people with digestive problems. If you look at the problems that people with celiac disease are facing when shopping for food, I am asking myself why you would want to needlessly inflict this on people with autism? I think that here, small victories can cloud the real issue: Of course there are autistic people with celiac disease, and of course they benefit from a gluten-free diet. But what benefits one person on the spectrum may not benefit another. I have no idea why, but diets as a magic cure for autism are extremely popular. In a culture dominated by dieting, it seems only logical that desperate parents turn to nutrition in order to alleviate their child’s autism. All the more so if what they really want is to “heal” it.

Another phenomenon, especially in the English-speaking world is the propagation of sometimes rather obscure healing methods. One of these, which has even found its way into German twitter is the „Son-Rise-Program®“ originating from the east coast of the United States. Apparently, the autistic son of the “inventors” had been diagnosed with an IQ of below 30 at the age of one year. The parents did not accept this diagnosis and went into intensive training with their son. Their therapy was based on imitating the movements of the autistic person and the so-called “Socratic dialogue”. Apparently, after three years of this procedure, all signs of autism had disappeared and the boy was “healed”. He went on to study at an elite university and is now running the institute that his parents founded in order to teach this method. The therapy has even received a trademark! Let me say this much: Maybe wonders do happen for those who believe in it. But they are by definition extremely rare. I find it a bit ambitious to claim that this wonder can be repeated with every autistic child! But apart from all flippancy, let me have a closer look at this therapy for you. First of all, I do not know of any intelligence tests that even go as low as 30. And even if 30 were the lowest possible result, it would pose the same problems as very high results: They are simply not very reliable. Intelligence tests are not designed for the exact determination of extreme values, be they high or low. Assuming that this was a standardized test, only about 0.1 percent of the population would reach a value of 55 (equivalent of an IQ upwards of 145). This puts “an IQ of below 30” into perspective. And assuming that the determined IQ value, in other words the “tested intelligence”, albeit an artificial construct, is subject to some change during a person’s lifetime, still the general tendency (high or low intelligence) will remain largely the same. Let me point out that a tested IQ of 30 is supposed to be as “common” as an IQ of 170! So how likely is it for a person who had tested as low as 30 to go on to study at one of the nation’s best universities, given that their admission requirements are notoriously high? Of course autistic people occasionally score erroneously low on IQ tests. This happens because such tests have not been developed for people on the autism spectrum and therefore do not take their cognitive and developmental idiosyncrasies into account. But any medical specialist should know this. If any of these determines an IQ of below 30 in one of his patients and given the above scenario, it would beg the question as to whether his diagnosis wasn’t false. And this would lay the effects of any “miracle cure” open to discussion. But there is money to be made with miracle cures and after all, the United States of America is notorious for its belief in miracles!

There is another issue that you find predominantly in the English-speaking word and that provokes the ire of many a person on the autism spectrum – the dogged search for the underlying reason for autism. I am not talking about serious science here but about bogus studies of all kinds and descriptions. On an almost daily basis, you are bombarded with news items about possible reasons for autism: the proximity to motorways, too short a distance between sibling births and, first and foremost, the simply unshakeable vaccination myth. Of course everyone is entitled to their opinions but I have never seen a debate as heated as that. I can only briefly touch the issue here but let me demonstrate the double standard employed in its discussion:

The supporters of this theory maintain that MMR vaccination can cause autism. Their opinion is based on a small number of studies. Yet they in turn demand that 100 percent proof be given that these vaccinations are not harmful. It should be obvious that such proof cannot be provided, because it never can in these scenarios.

In my opinion, two salient points are being ignored in this issue: Firstly, the first signs of autism begin to appear at an age of two to three years. That is usually exactly the age at which a child is vaccinated. According to recent studies, however, autism is largely genetic and can therefore not be “caused” by external influences. Yet the temporal coincidence of vaccination and diagnosis almost inevitably leads to the conclusion that the two facts are related.

Secondly, autism is only seen from one angle here, for while autism is a genetic condition, it is possible to acquire certain autistic traits after birth. While it is thinkable that the vaccination could stimulate the further development of autistic traits, it is too easy to talk about autism as a result of the vaccination. But apparently, it is not enough to talk about “autistic traits” when “autism” would sound so much more dramatic. Yet it is all too easily forgotten that this type of debate only serves to make the life of people on the autistic spectrum more miserable!

Of course I have asked myself why this is so and I can only conclude that the reason is – money! Everyone is looking for someone to blame. Here, the children’s families brush aside all arguments to the contrary and home in on a possibility to receive compensation for the condition of their child – and small wonder, given what exorbitant sums you have to pay for medical services in the USA. Litigation is rampant and who better to blame than the pharmaceutical industry? God forbid that the parent’s gene pool could have anything to do with their children’s autism!

Just a little aside: The research conducted in the 1980’s resulting in pointing the finger at vaccinations were financed by lawyers who wished to take a number of pharmaceutical companies to court. How surprising.

Hon y soit qui mal y pense!

Let me just finish by saying that it has never been so important to raise autism awareness – by which I mean the awareness of what autistic people really are! Understanding engendered by information is the best way to integrate people with autism into our daily lives. Please look closely at any information concerning autism with a critical eye  – not all that glitters is gold!

Posted in Autism out of the Box, Media and Journalism, Medicine, Science and Research, Miscellaneous | Tagged , , , , , | Leave a comment

Autism? You’d better go into hiding!

Today is one of these days where I really feel trapped in „my world“. Not because of my autism and because I like living in my own little autistic world. If I did like living in my world, I would not feel trapped, would I? No, it is because as a person with autism, I am being forced into anonymity against my will. Yet if you consider the consequences that might ensue if my name would be associated with autism on the Internet, the wish for openness is quickly put into perspective!

But quite apart from being equivalent with social suicide, the need to keep an autistic condition secret extends to the smallest things…

I admit that it is a little harder for someone like me, who has only been diagnosed with autism in his mid-thirties. If my condition had been known early, my parents might have helped me with the decision as to whether to keep my autism secret or not.

But the whole dilemma starts even before the diagnosis. You have a hunch; you know that something is „not quite normal“. But whom do you turn to? How do you talk about autism when any type of mental handicap (and autism is not a mental handicap!) or mental illness is considered a weakness and, by and large, a taboo? Who do you open up to? Who do you discuss this with? Do you really want to risk being considered a crackpot? After all, you have made it this far without bearing the label of autism; you have been „normal“ up to now – how do you make it clear to others that his has not actually been the case?

The less said about the period before my diagnosis the better. But do not believe for a moment that it was easy to obtain a medical referral to a psychiatric practice specializing in the diagnosis of Aspergers Syndrome/Autism!

But eventually, you have got your diagnosis, and now what? On the one hand, there is a sort of relief because finally, here is the explanation for the thing that has been bothering you for so song. But on the other hand, a simple diagnosis will not put an end to the misery. If only!

So what are you going to do now? Many autistic people with a late diagnosis are not sure whether they even want to let their families know about it, let alone their friends – if they even have any, for autistic people do not tend to have too many friends anyway. I have chosen to tell a few of them about it and believe me, you quickly learn who your real friends are and what friendship really means!

The private sphere, however, is only the tip of the iceberg. The real trouble begins in the workplace. Do you really want to run the risk of having to tell a future employer about your autism? If you do, it will minimize your chances of employment. There are not many personnel administrators who really know how to deal with autism. But they don’t really need to, do they, because these people won’t function in the workplace anyway (well, we have all watched „Rain Man“, haven’t we?). In other words, if you are open about your autism, you will end up banging your head against thick walls made up of stereotypes and preconceived notions. But if you keep it a secret, you will sooner or later come to the point where your employer gets irritated because he expects more „normality“ from you. Your colleagues will look at you strangely and, in the worst-case scenario, start bullying you – or you will have a mental breakdown because you cannot work under the prevailing conditions. It is like a bit of a lose-lose scenario!

The national health system isn’t a great help, either, although it should be. But even there, you have to keep schtum about your autism or, if that is not possible, at least underplay it as much as you can. For myself, I have come to a point where I feel that as a person with autism, I haven’t really got a fair chance in this world. So what can I do except put on a mask and try to play the game of normality – regardless of the psychological cost.

I have always had difficulty accepting unfairness. It drives me crazy that this world so desperately needs to be educated about autism, especially the „less severe types“. It is the same fight that blind people or people who are in a wheelchair have on their hands and are still far from winning! We are all still decades away from a satisfactory solution. But how can people with autism be expected to have the strength for such a battle if we cannot even admit our condition for fear that the public reaction will make our life unbearable?

I would so much like to walk around shouting: „My name is XXX, I have autism! Please accept me for what I am!“ And if I know myself, this might actually happen – and in the not too distant future! I will probably be outing myself with quite a bang and will end up alienating many, many people. And I can only hope that this will not ruin my life completely. But there is a ray of hope. There are such people as, for instance, the professor who supervises my M.A. thesis. I have told him about my condition, and what can I say? He has taken it in his stride, not changing his behaviour towards me at all. I wish that were the case with everyone!

But until that day comes, I must continue to lead a sort of shady existence, comparable to a terrorist or a common criminal. But we are not criminals – we are just different. We are what we are.  Please let us be different!

Posted in Autism out of the Box, Miscellaneous | Tagged , , , | Leave a comment

Autism is when you laugh anyway!

My last article concludes the discussion of autism and perception for the time being. In the following posts, I will look at the public image of autism and at frequently asked questions. While I will inevitably take a close and critical look at the „neurotypical“ definition of autism, I will also subject the behaviour of people with autism to the same scrutiny. Fair is fair.

In the last few weeks I have received a lot of feedback and had many, sometimes very intense discussions on the subject of autism. In these discussions, some points have come up, which I would like to talk about now. One lady, who works as a carer, rather unexpectedly asked me whether I knew what old people with autism expect of geriatric care homes. I realized that this is a subject that has not really been broached in our modern society. So I turned the tables and asked her to ask her colleagues what they knew about autism. It turned out that their initial reaction was panic. They immediately concluded that they were to receive a person with autism into their care – for why else ask these questions? This shows, again, how little the world in general – and skilled carers in particular – know about autism!

So this article is about the public image of autism. Of course, this is a very big subject and as I will only be able to discuss some of its aspects, I will concentrate on the main stereotypes and prejudices. Continue reading

Posted in Autism out of the Box, Medicine, Science and Research, Miscellaneous | Tagged , , , , | Leave a comment

Autism: Please don’t touch

With this blog post, I would like to wrap up the subject of „autism and perception“ for now. Last week, I talked about feeling, particularly about an autistic person’s sensation of pain. Let me continue now with the sense of touch.

Like all the other senses, the sense of touch can be extremely acute in persons with autism, in every respect of the word. Have you ever noticed how an autistic child may be less interested in the function of a toy than in a particular aspect of it or its surface?  This can be a partial function of a toy or the object, for example the turning wheel of a car, a moveable part or something that makes noises. Equally, the most fascinating thing may be the surface texture. I can’t possibly say whether this is an aspect specific to autism, but I for my part have always literally been trying to „grasp“ my world. I have always been fascinated by surfaces, their structure and texture. Even today, I have to exercise strong restraint in order to not just touch everything to get a better handle on it. Of course, as we grow older, we learn to remember how certain things feel and also not to touch each and everything without thinking; the former by trial and error – and unfortunately, sometimes also the latter. Continue reading

Posted in Autism out of the Box, Perception | Tagged , , , , | Leave a comment

Autism: Breathtaking and ear-splitting Part 2

The sense of taste:

Gourmets pride themselves on their fine sense of taste, but they have nothing on some people with autism. They can taste, for example, that the dried-up coconut macaroons have been put in a bag with a piece of apple in order to soften them up again. That is good and well if you like coconut macaroons and apples. But think about the hand cream or disinfectants used by the sales personnel at the butcher’s or bakers? Cold cuts with a hint of hand cream are rather off-putting. Have you ever had a piece of really nice cheese that tasted faintly like the hostesses’ perfume? Then you know what I am talking about. I do not know what some bakeries do with their merchandise, but bread rolls with a whiff of “God knows what” could make you want to give up food altogether. But the fun really starts in a restaurant. Have you ever had a soft drink tasting of fairy liquid? Fantastic… Not! It makes the argument of whether you’ve been served Diet Coke instead of Classic a mere doddle. Here’s a tip for the diabetics amongst us: Bring a blood sugar tester – that should be fun! Unfortunately, there are as yet no fairy liquid test kits. But let’s not be to hard on the food industry. Continue reading

Posted in Autism out of the Box, Perception | Tagged , , , | Leave a comment