Explaining autism in simple terms
Over on my facebook page someone asked …“If you had to explain what is autism in simple terms to a person who knew nothing about it what would you say? “
It was a great question and putting autism in simple terms… well that’s so hard because the word is misused for SO MUCH. For example among the conditions I identified in The Jumbled Jigsaw as part of an autism ‘fruit salad’ were… Agnosias = the brain fails to put meaning to what the senses perceive.
Alexithymia = where the brain can’t easily process emotions.
Aphasias = the brain fails to connect thought to verbal speech.
Selective mutism = anxiety severs the connection to verbal speech.
Oral dyspraxia = the brain fails to co-ordinate articulation.
Motor dyspraxia = the brain fails to co-ordinate physical co-ordination.
Dyspraxia = there parts of the brain are not processing information efficiently, resulting in mono-track, partial and delayed information processing with related information overload and potential for meltdowns.
Co-morbids = the brain’s chemistry is imbalanced resulting in involuntary mood, anxiety, compulsive disorders, attention deficits, mental confusion and sometimes psychotic episodes.
Gut/immune/metabolic disorders = where genetic and/or environmental physical health disorders effect information processing, behavior, interaction, communication, development and functioning styles, levels and abilities.
Brain damage = where genetic or environmental damage to the brain has resulted in loss of functions, inability to use existing functions in an integrated way or leads to such needs to adapt the use of the body and senses that it sets in motion altered developmental paths.
Seizures = electrical surges in the brain which are generally identified as epilepsy and which can include atypical epilepsies and complex partial seizures resulting in staring spells, involuntary movements and utterances and disturbing sensory perceptual and physical experiences. Seizures can also result in progressive brain damage, learning disability, loss of functions, inability to consistently use the functions one has and interfere significantly with development.
Personality disorders = where particular personality traits have become so extreme under a range of different environmental, physical or genetic circumstances, that the personality trait has made the person unable to function to their greatest potential or so disrupted their environment as to make it unsustainable.
Narcissistic Personality Disorder = where someone (with or without autism) who has a strong self-confident personality trait has become so over indulged that their natural tendency to presume rights over those of others has reached disorder proportions. NPD would be complicated if the person was raised in a situation of ’emotional incest’, particularly where the parent has become co-dependent to their child’s personality disorder.
Obsessive Compulsive Personality Disorder = where a person is so details oriented, perfectionist, achievement driven and afraid to lose control, that their life is built around their obsessive interests.
Reactive Attachment Disorder = where due to early separation, severe health issues, significant sensory perceptual deficits or due to abuse or neglect, the bonding process was interrupted severely enough to result in later social-emotional development
Exposure Anxiety =Involuntary avoidance, diversion and retaliation responses resulting in difficulty doing as oneself, by oneself or for oneself.
Autistic withdrawal = temporary or long term, acute or chronic reaction to distress, overload and vulnerability in which one shuts down or closes off to communication, interaction or consideration or others.
Autistic encapsulation = where a range of conditions and circumstances result in extensively diminished ability to consider, turn to, relate to, trust or need the involvement of others. This may be to the degree that the individual either ignores all needs or desires which might require or involve others or the behavioural/neurological pattern has become so ingrained it cannot naturally occur to them as to how they might involve or want to involve others.
Autistic culture = where a group with a shared diagnosis or identification with a shared diagnosis, see themselves as a distinct social group.
Autistic pride = where a group with a shared diagnosis or identification with a shared diagnosis, focus and embrace the perceived shared traits that adhere to popular autism related stereotypes.
And so… what’s autism?
Well that’s usually the diagnosis when a most diagnosticians meet someone with an autism fruit salad and can’t differentiate, recognise or label the individual parts or when there’s no funding for the sum impact of those parts which has presented itself ‘autistically’.
Donna Williams, Dip Ed, BA Hons.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.myspace.com/nobodynowherethefilm
http://www.donnawilliams.net
http://www.aspinauts.com
I posted this question on my facebook as you know Donna and i was surprised and found interesting some of the answers given.
It is very difficult to explain to a person in the street who knows nothing about autism. Most people I have met tend to say ‘is it like the character in Rain Man?’ or ‘ are they in their own world?’
Nice to see you here Anna. I always think the best response to the question of ‘what is autism’ is ‘whose autism?”are we talking about.
Because, for example, just take Temple and I as two examples of the word.
Temple Grandin’s autism would mean things like an early history of Oral Dyspraxia sorted through speech therapy by age 3 and a half together with a highly conscientious/obsessive-compulsive personality (OCPD), together with sensory hypersensitivities (common to around percentage of the general population but can be worsened in those with Dyspraxia due to poor neurological integration so poor/late sensory integration, and some behavioural disturbance which could be difficult to separate from attachment disorder etc in being brought up by nannies and high ability for picture thinking (60% of the general population are predominantly visual thinkers).
But if you look at me, you have no oral dyspraxia but instead visual and verbal agnosias underpinning Semantic Pragmatic Language Disorder. You have attachment disorder associated with a combination of environmental factors but would still have happened in the context of severe visual/verbal/body agnosias and the distubred body-self relationship of Primary Immune Deficiency and associated illnesses, neurological/cognitive impact from 6 mths old and associated and co-morbids (tourette’s, bipolar, OCD) from age 2-9, atypical epilepsy, and severe visual agnosias meant there was a huge loss in ability to interpret visuals when not moving or being touched and very limited ability to think in pictures.
So utterly different versions of ‘autistic’ every very different ways of working constructively with the underlying issues, and each equally valid experiences of ‘autism’.
And you could take so many other VERY different examples. Sydney Edmonds, for Example, from the film My Name Is Sydney, well Syd had speech and lost it to what may well have been Speech Aphasia and now uses typed speech. Her loss of abilities around 18-24 months may have fitted with Disintegrative Disorder. She has significant motor planning problems, and a fairly disabling level of hypotonia. And whilst Syd can relate to the Exposure Anxiety and some of the agnosias which were significant in my fruit salad, her other issues have not been significant parts of my autism, nor Temple’s. So asking ‘whose autism’ is really important.
And there’s a gazillion other people with autism for whom there fruit salads are just as different, and as valid.
Hi Donna, why is it so hard for a recently diagnosed elderly adult female with Aspergers Syndrome to get any support in Sydney? I need a mentor, somebody who understands autism, who can help me handle the world better than I can on my own. I had meltdown in the chemist today because I thought the young, supercilious, male pharmacist had not given me back my Medicare card which I only realised after I had left the shop. Because I was on my own, and feeling fear and frustration and lack of support, I lost it. I would have preferred to have handled it in a more positive manner. Generally I feel like I’m trying to pilot a plane without having had any flying lessons, and that any minute I’m going to plummet into the depths. And it seems to be getting worse, my inability to process information, as I get older.
you have to ask yourself why you flip out. emotional dysregulation, sure, panic attack, ok, intermittent explosive disorder, possibly, maybe something omega 3s could help as a mood leveller, maybe worth looking at Personality Disorder too http://www.ptypes.com/type_passions.html . but fact is by adulthood if we feel a tantrum is coming on we have learned to leave, have a walk, do deep breathing, employ self calming strategies, then come back and calmy sort things. many aspies who had the hugest emotional dysregulation have come to this point. thing is a helper can’t step in at every possible tantrum to take over. And insight means knowing what we really mean when we say ‘its the autism’.
Yes, I hear what you say, and I have been managing my emotional outbursts much better since my AS diagnosis and newfound understanding of what triggers them. But I think the underlying cause in my case is being TOTALLY ALONE, having NO ONE, not a single person, who cares if I am dead or alive. This is a very frightening and depressing space to be in. Before my AS diagnosis I spent years going to CODA (Codependents Anonymous) meetings and thought their idea of sponsorship was a very good one. New arrivals could seek out someone who had been going to meetings for longer and ask them to be their sponsors. Once hooked up with someone, they could phone them whenever they needed a ‘reality check’. I think something similar is needed for adults with AS. A buddy system or other form of mentoring.
eww not for me, would scare the heck out of me. I’m a solitary, very vigilant, idiosyncratic, I love my own world… I’m rather luke warm on whether anyone cares if I’m alive or dead… less responsibility if nobody cares 🙂 I don’t have to worry about their feelings, their loss etc… freedom to get sick, to die, to go AWOL… sounds good to me.
but other personalities feel aloneness acutely, especially the mercurial and the sensitive and the devoted traits which tend to do the joined at the hip thing… look them up. http://www.ptypes.com/type_passions.html
not convinced support is their answer. I’ve found sink of swim brings out far more in them than hand holding, even if they’d crave it.
I think it is impossible to imagine what it must be like to be totally alone if you have managed to establish relationships with people who value and support you. I’m still struggling to do that. An earlier diagnosis would have helped. At my age, 61, I am noticing signs of ageing like loss of memory and a general slowing down which make it more scarey being alone. I was totally oblivious to my aloneness until a couple of years ago when a surgeon refused to operate on me because I had no one to take me home after the anaesthetic. I would describe myself as mercurial and sensitive as well as creative and artistic. Perhaps it’s about where I live, on Sydney’s stuffy and snobbish North Shore, that I can’t find other people like me. Kindred spirits are what I need.
well mercurials and sensitives sure do do loneliness!
Hi Donna
Yesterday I saw a new shrink. He said people with Aspergers Syndrome cannot ‘self-conceptualise’ and that I was not AS because I could. Do you know anything about this? It seems to me that you can self-conceptualise. He behaved like he thought he was God, basing his assessment on what I said without asking me any questions. I walked out after 15 minutes, saving myself the $330 he was going to charge me for the privilege of abusing me.
glad you saved your money. I’ve known hundreds of adults dx’d on the spectrum. Those with autism and non-verbal but with typed speech have sometimes been amazingly insightful and profound. There’s nothing about having Tourette’s, OCD, bipolar, depression, speech aphasia, dyspraxia or visual-verbal agnosias which would necessarily make someone dx’d with ‘autism’ lack insight. I do find the women with Asperger’s tend to have more self conceptualisation than the men, but I’d say of the men with it, I’d say at a guess, 70% of the women with AS I’ve know can self conceptualise and perhaps 40% of the men. Social emotional agnosia is common in those with AS and this means many live only in a world of facts and don’t reflect emotionally, socially. But whilst most people with AS have social emotional agnosia I think only a percentage of those with autism do, as they tend to have more meaning deafness and meaning blindness instead and, hence, compensate in other ways. The insight that emerged through my writing was absolutely not present consciously at the time. My writing is automatic and has taught me much about my own unknown knowing.
[…] Explaining autism in simple terms […]
Donna, My son has autism an I am a member of the local autism society. We know that children with autism can make gains from interaction with music and art and would like to start an art program but none of us are artists and don’t know how to start such a program. Do you have any advice for us or know of any resources we could use? We are in Chattanooga,Tennessee, USA.
yes,
2 meetings a week
one for the parents – a professional development meeting
one with the kids, the music/art session
Now…. to get training
YOU TUBE is your friend… You Tube has beginners music and art lessons and find 10-12 of them, favorite them, invite the other parents over for a weekly professional development meeting, explore each lesson with them then organise to replicate it for the kids group.
there are also activity books with simple music and art lessons.
if you’re still stuck, you can book a series of Skype consultations ( http://www.donnawilliams.net/emailconsult.0.html )with me and I’ll help you with ‘lesson plans’.
Donna *)
Hi Donna,
New visitor here…
Forgive me if I’ve missed something, but aren’t you married? You say you are “solitary” and “luke warm on whether anyone cares if I’m alive or dead… less responsibility if nobody cares”.
But – if you’re married, how do you reconcile these statements with the fact that you *do* in fact have someone who (presumably) cares whether you’re alive or dead?
It seems a bit facile and glib to me (as a person who has no emotional support system) to be so (apparently) dismissive of a stable relationship which has provided you a lot of support and security.
In a way, it’s a kind of privilege-blindness – not everyone is able to achieve such relationships in their lives. Having a supportive person can make all the difference to one’s mental, physical, financial and emotional survival and long-term health. It can make the difference between surviving and not, literally…
If I’ve drastically misunderstood something, I apologize – this is just a bit of a sore spot for me, when I hear people dismissing significant relationships in their lives as being of no consequence, apparently unaware of how *hugely important* such relationships are to one’s mental health and well-being.
Sorry if that got a bit long and ranty.
No, I actually agree with you. It’s an old article, 2007. I was much more emotionally ‘autistic’ at that time and didn’t care if anyone loved me… that was entirely up to them… not because I didn’t care or empathise with their feelings… I did… just I perceived people as essentially islands, that each has feelings in isolation, just because they do… and in 2007 I interacted largely that way… in parallel, in an indirectly confrontational manner, more ‘cat’, less ‘dog’… I lived according to ‘simply being’… that people didn’t owe me anything and vice versa…. and that doesn’t need to be cold or dismissive, but it is very solitary… and solitary didn’t necessarily mean alone, it meant being in a room together and enjoying the company without overtly paying it any mind… for others that looks ‘autistic’ but my husband worked the same way, he was quite at home with that solitary style. So I think it is very painful when one has that style and the other doesn’t have that style at all… then it feels to them excluding, ignoring, and its not, not from the Solitary’s perspective… its like saying a cat which chooses to stay in the room with you is therefore ignoring you unless its all over you like a dog might be… not true… but to some people it would surely seem that way, until they realise that if the cat were uncomfortable with their presence it would have left.
Re financially, even through homelessness and unemployment I have been relatively self supporting since the age of 15. I’m extremely autonomous, always was. So even though relationships meant shared rent in my intermittently homeless teens, relationships have never meant financial support in my world, not then, not now.
So, anyway, yes, its 2010 and I’m less ‘Schizoid’/Solitary, I’m far more privilege aware re warm fuzzy non-solitaries, their perception, their needs and my own non-solitary traits have had a chance to catch up and explore so I find their reality more relateable now. But if it helps you, my testimonials show people find me warm, supportive, approachable, so I have at least structured my life to have a balance of social openness and solitude.
Donna.