My Dad is a foundation of why I do not wallow in self pity for too long, he is a trooper with a good sense humour and a positive outlook on life itself, for five years he has been in constant pain due to his leukaemia and graft vs host disease.
I am constantly reminded not only of the fragility of someones mortality but also the inner positivism of the human spirit, he seldom moans, complains or feels sorry for himself he is always pushing himself to the limit supporting the family as and when needed.
He takes 90 tablets a week all to aid his fragile immune system and he has weekly checkups and is on a high dose of steroids and has blood cleaning once a week also.
He is tired a lot with pain or high and emotionally unbalanced due to the psychological fallout of having a high dose of steroids. I am glad he is still with us and I am so glad I can spend time with him we support each other he is a practical, down to earth man, takes no bullshit and shoots from the hip. I respect his worldly wise advice giving good foundation for accepting failure as normal, taking ownership of situations and humility. He is highly spiritual.
His life may well be shortened but he is adamant to live it to the full.🙂 I think we could all learn from this.
The word is well a term for people “off the autism spectrum” but when it is used in a such way to discriminate against a collective of people in which “other” is deemed as wrong, offensive, unaware, lacking, not knowing, stupid and ignorant it doesn’t matter how you package this one it is still wrong to be prejudice it is still wrong to project views that are bigoted and hiding behind a “good cause” doesn’t wash with me.
At the end of my lecture I asked ‘did you enjoy the talk’.
The leader of their group replied in a tone lacking in warmth, ‘it would have been better without any NTs present’. The others chimed in in support of him. Alienated, I left them to it.
Later when they were buddying up with more of the same separatist rhetoric and there was a tone to it that sat uncomfortably with me, a tone I’d heard before, in hierarchical non-autie children in playgrounds once upon a time (where I’d also known nice ones).
I had to let this group know that I simply don’t do bigotry… that my non-autie friends are not typical, mundane, boring or expendable and that I refuse to use any derogatory term that hints they are such, such as ‘NT’.
As you can imagine, they were quite taken aback. I was meant to ‘understand’. I was meant to be ‘one of them’. But if ‘one of them’ meant I was meant to hang out in a group and dislike or disrespect another group, and share this as ‘belonging’ and ‘shared culture’ and ‘shared understanding’ then this wasn’t ‘me’. Donna Williams (Polly Samuel)
PREJUDICE IS PREJUDICE REGARDLESS OF THE WORDS USED
I will like to let people be aware that anybody who has used this term to the effect stated in this example – have you ever been called names? Names that hurt? Names that make you feel like shit? Names that question your own being? Names that make you feel small or inferior? If you have then surely you must understand that any form of separatism is wrong and that if “you neurotiypical” was used in any other context such as race, gender or sexuality it would rightfully be deemed offensive.
“NT” & “AUTISM THEY ARE ADJECTIVES
“NT” is word a never use now because of what it has connotations with but people are people and acceptance doesn’t come from pigeon holing collective realities as “NT” or “autistic” how about seeing people as human beings in the world we live in now we are forgetting that fundamental fact I see people. Seeing people is cool.🙂
As odd as it may sound people can have “pieces” of what can someone on the autism spectrum. This year I want to an event in Cardiff and spoke towards the end of the speech I asked if people in the audience related so some of the issues around autism presented many put their hands up. These people weren’t on the autism spectrum but the could relate to the some of “pieces” I had been describing.
“SUB CLINICAL” ASPECTS & SPECIFIC ISSUES FOR THAT PERSON
This is because “autism” is made of pieces and these pieces differ from person to person that means that different “expressions” and “presentations” will be shown. So if people who are considered “sub-clinical” or as having “traits” what help is there for them?
The question I would say is what do you relate to? How does it present itself? What help is there for those people whose issues maybe considered not important but at the same time have a significant impact in certain areas of functioning.
With this increased awareness could mental health services and other professionals be able to help diagnose people with these issues?
MY AUTISM “FRUIT SALAD” 2016
WILL THE WORD AUTISM BE USED IN THE FUTURE?
Each “piece” of my “autism” has its own reality and function some of them you may well be able to recognise others you may not. By saying that “autism” is one thing (and can then only be owned within that group) when people with acquired brain injury, strokes, cerebral palsy, genetic syndromes can inter relate to these issues presented (and may well have or have not have autism in mix) it really begs the question will the term autism be used in the future?
I spoke to a neurologist some years ago who said in 20 to 30 years the word will not be used and instead the pieces of that person’s profile would be diagnosed instead this would certainly be progression for people with autism and also others who have “pieces” to.
All human beings have personality types they are part of what makes “soul” along with are senses, information processing, reactions, life experiences, our friends, family members and cherished ones.
Many a disagreement has been made about me bringing up about personality types in the context of autism people have quite rightfully misunderstood my intentions or misunderstood the point of points I was trying to make so lets look at this a bit more.
Of the 16 common personality traits identified by Oldham, all of us will have around 4-6 of these which tend to be our main personality traits, what collectively presents to others as ‘who we are’, our ‘self’, ‘personhood’, ‘identity’, ‘soul’. When these are not overdeveloped, they present merely as ‘traits’. However, a particular personality trait or traits can become overdeveloped or stay at such a ‘volume’ that the person is functioning and presenting in the personality disorder range for that trait. If they don’t break free of this they will progressively so identity with their own personality disorder they will take it as their ‘normal’. Donna Williams (Polly Samuel)
NOT EVERYTHING IS THE “AUTISM”
It is not restrictive or silly to point out that personality types do exist within human beings and in context of this segment with people with autism. Human being not only have 4 – 6 main personality types (no we are not machines we “encoding”) and you can also have what is called “secondaries” (mine I would say are conscientious and adventurous) that come along for the ride and they may well clash “internally” with the main traits themselves.
This is fluid and normal there is of course genetic factor to these traits maybe you can see “yourself” in another family member certain behaviours you can relate to and/or acknowledge, just like you can have personality clashes at work because you cannot relate to how some operates this is normal.
EGO- SYNTONIC & SEEING THE PERSONALITY DISORDER AS “THE AUTISM”
Ego- Syntonic Meaning Consistentwithone’ssense of self, as opposed to ego-alien or dystonic(foreign to one’ssense of self).Ego-syntonic traitstypifypatientswithpersonalitydisorders.
If a person or people around the person “sees” their “autism” as everything about them (including dictating their personality) then hypothetically if they acquired a personality disorder would they see it just apart of of their autism? Not needing to be changed? Or modified?
What if it is having an impact on the person but they just can not unpick or see that it is an issue and it is having an overall impact on their functioning? Their judgements? Their reactions? Their interpersonal skills? Their daily living skills? What then? This is food for thought from both a practical sense and how specialists can diagnose and treat those with personality disorders on the autism spectrum.
MY FOUR MAIN PERSONALITY TYPES WITH THE DISORDER VARIANTS
As you can see on the left I have my personality types and on the right I have the “disordered” variants of those types the explained in the middle is clear these “stresses” can cause the “normal” personality types to expand and “grow” the person themselves may well be observed by others as being “different” quick to temper, quick to cry for example their reactions are heightened to an extreme.
For more info on personality types look at www.ptypes.com
2007 PERSONALITY DISORDERS A PERSONAL PERSPECTIVE
In 2007 I suffered a nervous breakdown my parents had noticed a change in “me” looking through my medical records two words sprung out at me “borderline” and “schziotypal”.
These had an effect on these five main areas of functioning
Personal Judgement
Interpersonal Skills
Personal Skills
Professional Skills
Daily Living Skills
Borderline Personality Disorder
It is characterized as:
A pervasive pattern of instability of interpersonal relationships, self-image and affects, as well as marked impulsivity, beginning by early adulthood and present in a variety of contexts, as indicated by five (or more) of the following:
Frantic efforts to avoid real or imagined abandonment. Note: Do not include suicidal or self-injuring behavior covered in Criterion 5
Recurrent suicidal behavior, gestures, threats or self-injuring behavior such as cutting, interfering with the healing of scars (excoriation) or picking at oneself.
Affective instability due to a marked reactivity of mood (e.g., intense episodic dysphoria, irritability or anxiety usually lasting a few hours and only rarely more than a few days).
A disorder characterized by eccentric behaviour and anomalies of thinking and affect which resemble those seen in schizophrenia, though no definite and characteristic schizophrenic anomalies have occurred at any stage. There is no dominant or typical disturbance, but any of the following may be present:
Inappropriate or constricted affect (the individual appears cold and aloof);
Behaviour or appearance that is odd, eccentric, or peculiar;
Poor rapport with others and a tendency to social withdrawal;
Vague, circumstantial, metaphorical, overelaborate, or stereotyped thinking, manifested by odd speech or in other ways, without gross incoherence;
Occasional transient quasi-psychotic episodes with intense illusions, auditory or other hallucinations, and delusion-like ideas, usually occurring without external provocation.
PEOPLE WITH AUTISM DO HAVE PERSONALITIES
These had a great impact on my overall functioning and it took over two years to bring the “volume” down on these aspects of my personality to levels of “normality”.
The first issue I want to address is within the autism community? I want to healthily challenge people who do not think (or acknowledged) that firstly personality types exist with people on the spectrum and secondly if they do what are they? And thirdly do you think you have ever had any personality disorders either yourself? Or in a loved on? If so what helped?
COLOUR MY PERSONALITY
To acknowledge personality types is not constricting it is in fact the opposite the world is an can be a colourful place and differing personality types are part of the package for everybody.
“Autism” is not a culture that is the premise of this post looking at the the diagram above you can see in simple terms how a “culture” works firstly it is a social construct it has been consciously created by other people, adapted, worded, it has its core values and within those vales it its has rituals, and within those rituals it has its “heroes” and within its heroes it has its symbols of recognition.
SAY YOUR PRAYERS AND TAKE YOUR VITAMINS
Why is this a worry within the context and confines of autism because what if you don’t fit the culture? Follows rules? Pray to the right “gods”? Follow its values and customs and overall practices? Does that mean you have gone to the “dark side” that your value has been lessened because you don’t follow suit?
WHAT IF YOU DON’T FIT? ARE YOU REALLY THE “ENEMY”?
What if this construct is the very problem within the autism “world” what if is the overall restriction for commenting you own reality that doesn’t fit was the status quo? Why should a open and honest dialogue be challenged because is doesn’t fit in with what is going on? That to me that is the ultimate reverse prejudice you cannot talk about this sort of isolation if you are practising and enforcing that types of isolation (even if it is in the name of a “good cause”).
REFLECTION
I am by no means the brightest but something is wrong here. I am all for advocacy, information sharing and above all honesty and truth but that is so that all realities are to be taken into account. Even if they are tough to hear they are valid part of the learning process surely?
LIVE YOUR LIFE AS A PERSON
The best examples of living life is by that very nature living it, ignore the politics, passe customs and overall dogma and just “be” there something fulfilling about just “being” and existing on a personal note my Father has helped by example to do this because life is short.
I don’t know about you but when I was born I was born a person, lets ditch the rhetorics and start listening to other peoples realities and opinions (regardless of were they come from) and accept that disagreement will come but everybody as their own things to say. Lets not be restricted by a “box” or the what is “in crowd” I thank the people who have said their realities with conviction, honesty, rawness and carrying on their lives as best they can be the example and don’t just claim it. I am not “autism” if doesn’t “define” my being it rides along life it not a “definition of my life”. I acknowledge those on and off the spectrum who are honest about the realities lets start listening and going from there keep going even if you don’t do not feel listened to, no popular do not worry at the very least (or most you have been true you and have not be influenced by the dominant wave.)
Fanciful fable a baby in a cradle
New life and new wonders able
A hand from “in crowd” does beckon
I walk in feel more lonely I reckon
I’m not those things you said “we” all are
I am not a part of a redundant single star
You say things as fact, straight lines so subjective
When all I want to be is “me” more reflective
A puppet on a string I cut them off and look around
The strings a still attached with words and the same sound
I got back to the “real world” so eagerly with open arms
It may not be perfect but honesty has its ethereal charms
I am part of the humanity no label defines me I shall deface
Of flesh and blood and gleefully I move from place to place
The words are rubbed away sounding through the sky
I now what I am from life to death a smile and a sigh
No one “owns” Autism that includes me, you the person next door- I think it is important to know what “autism” and “asperger’s”in terms of profiles are the presentations that come with them.
POSSIBILITIES AND OPENNESS
What are the components? (information processing, environment, mental health, personality, identity, learning types) By looking at these pieces you can understand what to do (or not to do) there are many different paths so by being open to possibilities.
GOING AGAINST THE GRAIN
I know my views aren’t popular for one because they go against the status quo of “neurodiversity” that is fine.
LOOKING BEYOND THE RHETORICS
Has anybody wondered what autism really is? Has anybody can beyond the passe rhetorics, memes or generalised views to know how to understand it? To empower people with autism, their parents and professionals etc?
LOOKING DEEPER MEANS LOOKING AT WHAT IS THERE
Isn’t it time to know what makes up a person on the autism spectrum? Dig deeper? I can tell you this is what my autism is made up of –
brain injury
hemiplegia
developmental delay
speech and language delay
language disorders
tic disorders
mutism
related anxiety disorders
personality disorders
learning difficulties etc.
This took six years of research and self-reflection to get to this point.
I say to people reading this do not remember me for saying but remember the template that is being presented and what you can relate to and do not relate to
Can some people have brain injury within their autism? Yes
Can people have personality disorders within their autism (but is seen as THEIR autism?) Yes
Is there too much militancy and politics in autism? Yes and that is however you look at the last point wrong.
LETS THINK ABOUT IT
For a so called “accepting autism community” I have seen plenty of internal upset, bullying, gas-lighting, trolling, arguing, tears and upset to last a life time. Autism has created a “culture” around itself and personally I have seen nothing healthy come out of it. I came into this in 2010 with my parents we quickly got out of it my parents still don’t “get it” the militancy by people on and off the autism spectrum and I have recently been reminded of why I stay clear of it.
The people and parents who seen themselves ashuman beings first (not defining by their “autism”), who are living their lives not consumed by labels and redundant definitions are the ones who are great examples.
This isn’t a game and when you are toying with people’s feelings directed at people who dare to above the parapet a speak from the heart and not tow the line Is this fair? I am all for healthy disagreement lets start listening.
My Dad is a foundation of why I do not wallow in self pity for too long, he is a trooper with a good sense humour and a positive outlook on life itself, for five years he has been in constant pain due to his leukaemia and graft vs host disease.
All human beings have personality types they are part of what makes “soul” along with are senses, information processing, reactions, life experiences, our friends, family members and cherished ones.
I don’t know about you but when I was born I was born a person, lets ditch the rhetorics and start listening to other peoples realities and opinions (regardless of were they come from) and accept that disagreement will come but everybody as their own things to say. Lets not be restricted by a “box” or the what is “in crowd” I thank the people who have said their realities with conviction, honesty, rawness and carrying on their lives as best they can be the example and don’t just claim it. I am not “autism” if doesn’t “define” my being it rides along life it not a “definition of my life”. I acknowledge those on and off the spectrum who are honest about the realities lets start listening and going from there keep going even if you don’t do not feel listened to, no popular do not worry at the very least (or most you have been true you and have not be influenced by the dominant wave.) 
DIFFERENT PRESENTATIONS 