I was diagnosed with autism last year. Since then I have read up a lot on the subject. Below is my first draft for an autism awareness session I am preparing for work.
Please let me know what you think?
1) There is a concept known as the Social Model of Disability. This means we are all disabled -even if you don't think you are.
For instance - since we cannot fly - we need stairs or lifts to helpus reach the floors high up in a building. Just as somebody in a wheelchair needs help (eg aramp) to reach the front door of a building. A disability is simply a disadvantage that is sufferedby somebody because the adjustments to overcome that disability have not been put in place.
2) Autism - Sally/Anne experiment - An ingenious experiment demonstrating how children withautism struggle to understand the concept of "Theory of Mind" - https://tinyurl.com/raw6v4w
3) The Double Empathy problem - like driving down a road with no headlights and no indicators.I cannot see where I am going. And you cannot see where I am going. And this creates afeedback loop where simple misunderstandings can escalate over time.
The theory of the double empathy problem suggests that when people with very differentexperiences of the world interact with one another, they will struggle to empathise with eachother. This is likely to be exacerbated through differences in language use and comprehension.
4) Awareness is a two-way street. If I am aware that I have a problem and those around me areaware as well - then we can work together to avoid any serious conflicts or misunderstandings.It is about using good faith as the basis for relationships in the workplace.
5) Autism and Asperger;s syndrome (people with autism with average or above average IQ, andgood verbal skills) used to be two different categories. But now they are both placed in thesame category as Autism Spectrum Disorder (ASD). Most people in the autism communityprefer the older categories. One of the symptoms of autism is that you are hyper-sensitive in atleast one of your five senses. In my case that is smell and taste.
If we communicated via scent (like some insects do) - then I would be considered more autisticthan I currently am. Or perhaps if I lived in a country that was very smelly. But because wecommunicate via sound - those people who are too overwhelmed by their senses (perhapsrelating to vision or sound) to communicate properly are considered "more" autistic thanpeople who can communicate okay.
And once you have trouble communicating - that feedbacks into the rest of your life when itcomes to education, friendships, relationships and careers. It is a disability that creates acompounding effect over time.
The idea of using the term ASD Is to try and look at things from a more objective point of view.Two people may be equally autistic. But in one case - the disability will be more serious due tothe impact it has on their life. ASD tries to recognise that disability (in the scientific sense) anddisability (in the social sense) are two different things.
Also - Hans Aspergers was a bit of a Nazi scientist. So that is another reason why his name wasremoved from the condition.
6) There is no such thing as being a "little bit autistic". In the same way you cannot be a little bitpregnant. People with autism have brains that are wired differently and this can be seen clearlyfrom brain scans.
No two people with autism will be the same. And on average - people withautism are actually more different from each other than people without autism are. Don't thinkof autism as a spectrum.
Think of it as a palette in which different people's autism is made up ofdifferent colours mixed in a palette. Once you have met one person with autism you have metone person with autism.
7) Autism is defined on the basis of having a number of traits common to people with autism.Many people without autism will share some of these traits. But that does not make you a littlebit autistic just as being asleep does not make you a little bit comatose. I had a better examplefor this but I cannot recall it now. Something about wheelchairs or something.
8) Another trait of autism is they find eye contact to be a problem. One of the benefits ofdiagnosis is being aware of this and training yourself to do it more often. In my case - I have badhearing - so "lip-read" a lot. So I never noticed that I didn't enjoy eye contact. But since mydiagnosis I have tried to compensate for this.
9) People with autism get drained by social interactions. It exhausts them. They are usuallyshattered after being around people all day at work. And they often need a day or two torecover if they have spent a day socialising.
I often wondered why I was constantly exhausted.
I thought it might be due to a lack of iron. I took iron supplements for a couple of years - but itmade no difference. My diagnosis was helpful for me in realising that I find social interactionvery tiring.
I read about somebody with autism who had cancer. He was told that he should expect to beexhausted all the time once he undergoes chemotherapy. What was interesting is that hereported feeling no more tired than usual since the tiredness of having autism is similar to whata normal person will experience undergoing chemotherapy.
10) People with autism do not instinctively follow social conventions. They will only do so ifthey can understand the point of them. They are ruled by the brain rather than the heart. Thiscan make them seem cold and aloof at times. But when you get to know them better - thesesame qualities are seen in a more positive light since they tend to be fairer-minded, lessprejudiced and more understanding of human foibles than regular people since they are notoverwhelmed by emotions such as pride, jealousy, anger or envy. You will never see an autisticperson holding a placard at a Gay Pride protesting about homosexuals.
11) People with autism have an emotional connection to places and ideas than to people. Assuch they are often the sort of people to devote themselves to intellectual pursuits (such as inscience).
12) People with autism struggle with empathy. They are often kind and considerate people. Butonly when a problem is pointed out to them since they have struggle reading body language orsharing the emotion of a person they are communicating with. People with autism often find it very hard to identify clearly what emotions (if any) they are feeling. This is called Alexithymia.
As such - they struggle for all these reasons to share an emotion with the person they arecommunicating with. This can be misconstrued as being uncaring.
13) People with Asperger's syndrome often have superb communication skills. They are able toteach themselves how to read from an early age and often have a better use of language andvocabulary than normal people. In other cases - their strengths lie more in their mathematicalskills. Most people with Asperger's syndrome seem to fit into one of these two categories.
14) Another common feature of Asperger's syndrome is an obsessive interest in an area thatmost people would find boring. I recently read an essay that discusses the relationship betweenthese types of obsessions and the idea of the scientific genius:
My special area of interest is magic. I have studied tens of thousands of magazines and books inthis area over the past 25 years, and one of the world's leading experts in this area.15) Sometimes an Autistic person's special area of interest is another person. This can result in"love bombing" where they obsess over that person. If the person is not open to this type ofattention - this can lead to stalking. If they are open to this type of attention it can lead to aromantic relationship.
However - the autistic person will hide a lot of their unusual qualities in an effort to sellthemselves to the person they are obsessed with. This can lead to disappointment once theobject of their affection eventually discovers the "real" person. An autistic person can hide theirtrue self until the point where they the other person has moved in with them and they aremarried.
Another problem is that an autistic person can lose interest in their obsession once they havewon them over.
"With the catching ends the pleasure of the chase" - Abraham Lincoln.
Over the years - the other person in the relationship becomes part of the daily routine to thatautistic person. As such - they do not want the other person to leave them. Not because theylove them but because they love the routine that that person is now a part of.This can lead the other person to feeling like they are trapped in a loveless marriage. One whichthey are scared to leave since they don't think their autistic partner will be able to cope withliving alone.
16) Autistic people seem to have the best romantic relationships with women who seem tohave "mother complexes", in which they enjoy caring for somebody who is honest and differentto the usual type of man they might date. This seems to be related to the woman's owninsecurities growing up where they feel more secure in a relationship where they are needed asa caregiver than as an equal partner in the relationship.
17) Autism runs in families. Asperger's syndrome was not really screened for until the late 90's.As such - there is a missing generation of people with the condition who are often only realisingthey have the condition when they see one of their children diagnosed with the samecondition.
18) The suicide rate for people with autism is seven times higher than for normal people.People with autism view the world very logically and they do not have strong emotional bondswith other people. As such - suicide is seen as an easy way out when life gets too stressful.Especially since they feel nobody will really miss them, and since we are all going to die one dayin any case. So why not simply bring forward that date a few decades to a time and place ofyour own choosing?
19) The number one complaint of people with autism is an ability to deal with stress. Normallife is already very stressful for people with autism. As such - when you dump real stress ontothem - they will explode. Either through suicide or a mental breakdown. I had a mentalbreakdown last summer that lasted about 5 days. It felt like being black-out drunk for five dayseven though you were completely sober.
20) People with autism often look younger than their true age. They also don't seem to haveevolved emotionally past the age of 12 or so. As such - they can give off an innocent glow. Thedownside is an emotional immaturity which means that autistic people often feel like they areten years behind their peers when it comes to "growing up", maturing and becoming an adult.
A lot of this is really good, but it can be hard to try and sum autism up in one awareness session (although this is a great start). One thing I'd be careful about is the information around stalking - people who have a better understanding of autism will be able to see the reasons behind this, but for those who are very new to understanding autism, they might find it a bit daunting (it might be information overload for a group of novices).
If I could recommend a few more things to add to the session:
There does seem to be a lot of information, so I'd try slimming it down to the most important things you want your colleagues to know (the things that'll help them understand you better as an individual), and focus on any practical changes they can implement to help you (e.g. summarising the actions from calls/meeting in an email).
Good luck with your session :)
Yeah - the stalking bit is maybe not appropriate.I am still learning about autism myself. And it seems to me there might be a link between autism and stalking. I find sessions are more interesting when you cover the good and the bad of a disability. Too often people want to focus on the positives without any acknowledgement of the negatives. I find that can come across as patronising.
Me too - no matter how much reading I do, I'm always discovering new things.
I do agree that it's good to give a well-rounded view, focusing on both benefits and challenges
Firstly, good for you for being proactive on this in your workplace. The list generally looks good but if I may offer a few suggestions?
Firstly: 20 is too many points - imagine if you were on the ‘receiving end’ of this information, would you be able to take in this much information?
I’d suggest limiting to maybe 10? Which leads neatly on to…
Secondly: make it personal - I’m assuming one of the key objectives of what you’re doing is to make it easier for you at work and for your colleagues to understand you better?
In terms of the individual points you list, please don’t get offended but here’s my take on what you’ve said:
1. Social model of disability - yep all good
2. Sally/Anne experiment - OK, this is used to demonstrate ‘theory of mind’ but you haven’t explained what that is. Maybe define ‘Theory of mind’ first then point people to the experiment?
3. Double-empathy problem - yep
4. Awareness is a two-way street - this looks kind of like you’re just stating the double empathy problem in a different way? Is it adding value?
5. Way too long and mixed messages - is this about Autism vs. Asperger Syndrome? You start to talk about the ‘diagnostic criteria’ and mention hypersensitivity but do this BEFORE talking about communication issues - I’d start with communication difficulties & then how hypersensitivity is part of that “I couldn’t concentrate on what was being said because of the smell of curry from 2 desks away…” again, personalise it. I’d probably also leave out ‘Hans Asperger was a bit of a Nazi scientist’!
6. Yep, but rather than the ‘palette’ approach, maybe start with the fact that the idea of the Autistic spectrum as being linear: High<>Low or Mild<>Severe being flawed? I find this diagram more ‘meaningful’ and it also gives you a way to talk about the different areas:
So for an autistic person with sensory issues and poor motor skills but good language, perception and exec function it could look like this:
7. See 6 & a bit of 5, maybe start with ‘What is Autism?’
8. Eye contact, maybe put this in a wider ‘Autism myths’ section? Also, it’s not necessarily about ‘not enjoying’ eye contact, it can also be that it requires effort to maintain and therefore reduces the ability to listen etc. which leads nicely into…
9. Social interaction and the effort required. Maybe bring in the idea of ‘masking’ here and possibly ‘spoon theory’ (if that works for you)
10. Yes mostly but “You will never see an autistic person holding a placard at a Gay Pride protesting about homosexuals.” er, you might… I’d avid this kind of generalisation
11. Not sure about your reasoning here, suspect it’s probably more a case that ‘things’ are more easily understood than ‘people’ and the love of logic, categorising, rules etc. makes ‘science’ attractive
12. Ugh, tricky… and I think your explanation is ‘wobbly’. Yes struggle with body language and tome of voice and Alexithymia and this leading to missing vital cues like someone becoming angry/upset and therefore pursuing a line of thought etc. ‘beyond the accepted level’ but don’t miss that there’s also the ‘too much empathy’ issue - for me it’s hugely traumatic to be around any kind of strong emotion, to the point of it being physically painful and triggering a need to ‘flee’
13. Here and elsewhere, please try to avoid talking about ‘autistics’ and ‘normal’ people… that’s the sort of ‘othering’ we fight against from NTs
14. Maybe ‘special interest’ rather than ‘obsessive’?
15. I think this whole bit is probably best left out…
16. This too. Just, no - don’t go there
17. Yeah, genetic not ‘vaccine damage’, bring this into the lead ‘What is autism?’ section
18. Again, I’d probably leave this out “Suicide is seen as an easy way out when life gets too stressful.” could be a very inflammatory sentence - if there’s anyone in the audience who has lost (or nearly lost) a loved one to suicide you’ll have just made a terrible error. I’m going to suggest that the fact you think including this point is OK is ‘classic’ example of autistic logical, un-empathetic, zero theory-of-mind. Don’t use it.
19. Yes include this, again leave out the ‘suicide’ and ‘mental breakdown’ ideas but maybe use the concept of ‘shutdown’ or ‘meltdown’ as these have a lot of good material online, are widely used in the autism community and are less ‘pejorative’ terms
20. Probably leave this out, don’t see how it’s useful
OK, that’s gonna read like I’m shredding what you’ve done, but please, please take it in the spirit it’s intended - a ‘good faith’, honest set of feedback that I hope will help ensure a positive response to your session!
PM me if you want to kick ideas back and forth and don’t want to do it ‘in public’!
No - I really appreciate that excellent feedback. Thanks a lot! I find my best writing comes from doing a "brain dump", and then editing down from there. And your feedback will be anessential part of that process for me. Thanks once again!