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Autism from the inside


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Not Proud Nor Ashamed – Balanced About Being On The Autism Spectrum

Premature 1I Was Born A Human Being

I was born in 1986 and as far as I know I was born a human being just like the 7 billion other people on the this earth and of course I had my issues related to autism not being able to speak, not seeing the world as a coherent whole, faceblindness, receptive and expressive language disorders, oral apraxia, hemiplegia and list goes on. These thing are not “me” being face-blind isn’t me, being aphasic isn’t me and  being hemiplegic isn’t me either.

Autism A Describing Word

“Autism” is describing not defining for some people autism is a culture a place to be in and around a shared culture, however I do not believe that autism is a culture but has been created as such and maybe the question is who created culture? What rules apply? What rules don’t? What is “autistic”? What isn’t “autistic”?

I often wonder I feel however so more closer to being a human being then defining myself by one word which means different things to different people.

When I was formally diagnosed in 2010 with autism I was told by my parents that you are still “Paul” and this diagnosis only changes one thing that you aware of what difficulties you have had.

Autism Is Apart Of? Not The Defining Factor? 

I would agree with them and be understanding my autism and as clustering of differing conditions I was able to piece together my “autism” not as I saw fit but looking at deeply and introspectively enough to understand myself and hopefully empower others.

I know what autism is for me it is apart of not the defining factor I feel indifferent and balanced about what it means. I have done enough research and consultancy work to know that personality types, co-conditions, environmental factors, metabolic disorders, auto-immune disorderslearning types and communication styles,  will have an impact on the presentation of one’s “autism” so what does that mean?

  • Not one intervention works for all
  • Not all the issues are the same despite have a similar and/or same diagnosis
  • Not all people with autism have the same wants, needs, or desires
  • Not all people on the spectrum have the same communication profiles
  • Some people on the autism spectrum have auto-immune and metabolic issues which impact on functioning
  • Some people with autism have dietary disabilities which impact on learning and information processing 
  • Some people on the autism spectrum will have undiagnosed personality disorders and mental health co-conditions that keep being called “the autism” when they are not

I AM autistic but I HAVE immune deficiencies, I HAD cancer (apparently I can’t actually un-have it, its called remission) , I HAVE Ehlers-Danlos Syndrome… I also HAVE visual perceptual disorders, I HAVE language processing disorder, I HAVE mild learning disabilities.

I do not feel I AM these things, they are not ME, they walk alongside of me, often as parts of my autism, and whilst I AM autistic, just as I AM immune deficient, and I AM mildly learning disabled, Autism is not the sum total of who I am, it does not define my entire being or personhood, even if my personality traits are archetypally relatively ‘autistic’, I remain a person WITH autism… someone who HAS autism and, ok, IS autistic. The rest is war mongering militant separatist fascist crudola

– says Groucho
“PLEASE ACCEPT MY RESIGNATION. I DON’T WANT TO BELONG TO ANY CLUB THAT WILL ACCEPT PEOPLE LIKE ME AS A MEMBER”.

Polly Samuel 2013

Overall autism is not the defining factor of my me. My personhood that will always shine first not because I am ashamed of my autism nor because I am not proud of it either I remain balanced in what that means it gives me clarity and sanity. I am a human being first.

Paul Isaacs 2017

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When A Puppet Is On A String It’s Time To Cut It

Three Faces“Autism” has politics too

“Autism” I have wrote many blogs about the the differing presentations, the fact that it is isn’t one thing a  singular syndrome that features the same static 2 dimensional traits that is certainly what it is not.

Confusion because of the “status quo?”

When stereotypes emerge people can feel that their voices, perspectives and realities may well be a bone of contention for the “status quo” model.

Having that readily supplied to them they may be confused, bewildered, angry, upset, saddened that that what they are hearing doesn’t relate to them, their child, friend or family member because the “status quo” supplies them with “the model”, “the framework”, “the thing” that autism is (of course it isn’t but the is the supply).

What is “in” today will be “out” tomorrow

If you have felt any of these theses things I bring a hopeful and proactive realisation let it go, let it go of the stereotypes, let it go of the the generic models around autism, let it go of the popular fads – go with what is right, what is true and what what is really for you.

Paul Isaacs 2016


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No One Should Be Poor – The Top Down Society

Social Security – Why make cuts in the first place? 

People with illnesses and disabilities should not keep “proving” something that they have and then run the risk of losing income because of “cuts”. Social security was put in place to aid and support the vulnerable in society – social security should not be up for cutting anymore as the price of living is increasing.

Remember the value of having a welfare and social security system

The problem with cutting welfare is it defeats the object and intention of what welfare is and who it is for people may have hard times in their life this not to say that I would want this on anyone but it can and does happen to people and wouldn’t it be moral and productive to help?

Different trajectories and reasons for using welfare and social security 

For example a person may lose their job and need a transition period between jobs  or they may have an injury or illness that means they are off work for a long period of time or have to (in some circumstances) quit work altogether.

Some people may acquire a disability in their life time such as a head injury, physical injury or both, some people may be born with such disabilities and/or illnesses.

The National Health and other National Services 

Privatising national services -does that work? 

Everybody has the right to enter all forms of care in their lives from the basics such as general practitioner appointments, dental appointments, hospital appointments, “social” housing and other services that fall under national or local services. If you over privatise you are falling into a a “top down society” where it falls down to money and the people who are able to afford such services can but other’s may not be able to even get the basics.

This to me is a huge step backwards in both morality and common sense the national services are meant for everybody this means that is doesn’t matter where you are in the “class system” it is for “you” – I am glad that people have been supporting the nationalisation of NHS (which if you think about is odd that a “public service” is becoming “private”) I have faith that this will prevail.

Conclusion

In order to see the logistics one must filter through the nonsense the money deficit in this country doesn’t make sense when millions is being spent on one thing but not on another. If it continues to be used as reason for such cuts that keep happening then how deep can cuts go? It seems that people have rightfully being challenging the cuts and telling their stories of what it is like for them, their friends, families and people’s communities.

I live in hope common sense and a simple act of morality will prosper. Socialism in its true form is not flawed it is about building a fair, democratic equal society that is what people in general should strive for.

Paul Isaacs 2016


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Moving On – Political Egalitarianism

Egalitarian_and_equality_logoWe Can Do This

Moving Forward – With the recent positive and empowering comments made below with regards to the Government yes I believe we can move forward if people help each other we can challenge many things and call upon common sense and reality to do so, call upon the will for better future were Egalitarianism and equality for all, regardless of class, social status, gender, colour or religion – with social economy made fairer and accessible for all, social security/benefits more person-centred and empowering the ill and disabled, NHS to still be the NHS, the rich and poor gap to cease and to an end to hopelessness and poverty. I still live in hope and were there is hope there is a vision of reality that accounts everybody so despite this government coming people can still stand for a fair social world. 🙂

Let’s do this! 🙂

Paul Isaacs 2015


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“Neurotypical” – Is the Word Useful? And/or Meaningful?

“Exhibiting the qualities, traits, or characteristics that identify a kind, class, group, or category”IMAG0110

The Use Of The Word

The word itself doesn’t make sense – being used to describe “others” (people who aren’t on the spectrum) society is a mixture of different sorts of people and rather than lumping people into one “group” (neurotypical society, neurotypicals, NTS) wouldn’t it be best to say people who don’t have autism? People who aren’t on spectrum?

It has also been used as word to “attack” people by some people on the autism spectrum who don’t have autism which surely is reverse prejudice?

Two wrongs certainly don’t make a right in this case.

People Who Aren’t On The Spectrum – Aren’t All The Same (Because No One Is)

You can’t define other (in this context people who aren’t on the autism spectrum) by a set of standards that you have created based on assumption that they must all be like that, that is stereotyping, generalising and over-simplifying. If you treat the set of people by the same standards you expect them to treat you in this case that doesn’t apply because of the contradiction.

If it was reversed and all people on the spectrum were thought to be the same and that was projected people I’m sure people from many different quarters would have something to say – the same applies here. Humans are unique and worthy regardless of having a disability or not. Everyone is equal.

Being Balanced

Two people spring to mind who also question many aspects of the autism word – I have written many blogs about sense of togetherness and all views being taken into account in balanced and objective manner.

Dr Casanova

Dr Manuel Casanova has written many thought provoking and reflective blogs on this subject about representation. I consider Dr Casanova a realist with very firm and empathic with genuine heartfelt intentions and questions with regards to this subject.

THE NEURODIVERSITY MOVEMENT

Donna Williams 2011

Donna Williams has also written highly reflective blogs with regards to the this subject. She has too shares the same qualities with a firm realistic approach, empathic genuine and heartfelt in her words and intentions. I consider their sage advice forward thinking in the context of the autism “world”.

NTs’… When a Word Becomes ‘Loaded’ and Why I Don’t do Bigotry

People Are People 

I like people on the basis of being people it doesn’t matter who they are or were they come from I like them for their personalities not because of anything other – human beings are all unique and that means we are all equal in the world.

Paul Isaacs 2015


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There Is No Collective “Sameness” In Autism The Profiles Are Person Specific

Lindsay Meetup 2014 Hi-Def4Autism & Identity 

Autism is a developmental disability which has an effect has and effect on a person’s functioning in various different areas of functioning. It is a diverse in its presentations, profiles and most in importantly the “mechanics” in other words what is different parts of the “clustering”.

Identity could be to to with the politics and culture that has been created around the Autism & Asperger’s Syndrome they are words for an overview of specific profiles and presentations. I don’t believe that autism is a culture at all. We are all human and cultures are created around “things”.

Autism & Asperger’s Syndrome – Profile Differences

Observations and studies 

Observations from autism consultant Donna Williams and also a recent study in 2011 shows structural differences from a neurodevelopmental perspective within different areas and regions within the brain. This I feel is important not only for people on the the spectrum but family members, teachers and other forms of support for the individual in question.

It is about personalising the support. There are of course people within who have both an Aspie and Autie in terms of mechanics which shows have fluid presentations are.

Autism Rather Than Asperger’s? Why? 

This isn’t specifically to with with my identity (I see myself as a person first( at all and isn’t said the intent to annoy or aggravate people neither. When I say “I have Autism rather than Asperger’s” I am talking about mechanics (what makes up my autism) and my formal diagnosis and differences which are apparent to me and how important it is to know them from this perspective. I have written many blogs on the subjects.

Why I have Autism Not Asperger’s Syndrome  

Why I Have Autism (Rather Than Asperger’s Syndrome) And The Importance In The Differences

Autism – No One Person Is The Same 

Autism is a clustering of pre-existing conditions that build up the person’s profile’s and presentation’s –  there is no “sameness” in that everyone on the spectrum is the same or share identical characteristics. I destian from using “us” and “we” language (single representation) and also “them” and “us” language. (people with autism and people without) Firstly because it is inaccurate to do so, secondly the only perspective I have is my own that is it and thirdly as an autism advocate that is a professional responsibility that I take very seriously I will not adorn to the status quo just because “that’s what is people want to hear”. I cannot speak for everyone that would not be right and potentially damaging.

Lets start being person-specific about profiles not generic, generalised and batting out stereotypes that can make people feel isolated or worse.

Toddler 1The Lost Voices – More Inclusion Needed

Everybody deserves and has a right to talk about their experiences – one could argue it is human right what has concerned me is the political militancy that I have observed on social media. I wonder how many more people are going to be hurt? I hope that is stops and people start listen – because sadly voices (valued perspectives) are going to be lost through bullying and silencing.

I have written this before but I feel inclusion is for everybody 

  • People with Autism and Learning Disabilities
  • People who Are Functionally Non-Verbal
  • Views and Perspectives From The Whole Spectrum (Different Cultures & Backgrounds)
  • Parents, Carers & Guardians
  • Autism Specialists
  • & More

Paul Isaacs 2015


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The Autism World – When Our Hearts & Ears Have To Be Open To All Realities

Things Need To Change?

It’s my opinion that indulgent self-gratification and the selfishness in parts of “autism world” is what I feel will eventually make it implode and full-apart. If it all becomes about “me,me,me”, point scoring, back-stabbing (being two faced), office politics, game playing, “them and us” separation, object using (psychopathy and sociopathy) not listening, stereotype investing and not learning then people like myself (who try to do their best to empower and stay true to themselves) and others on and off the autism spectrum are going to continue to get hurt, told to be silent not believed or to just told “get on with it” no one seems to care about such repercussions on one’s character and mental health. I process things slowly but get there in the end.

If we listened to one another and appreciated other’s realities we would learn SO MUCH more. It is not the act it is the heart of where the act comes from I do things to empower not monopolise or manipulate.

Conclusion

Listening is a very important tool it means not only showing an interest but in the context of this chapter it means taking into account someone’s thoughts and feelings. What journey have you been through? What paths did you take to get there? Every human being is on there own specific journey and is important to acknowledge that.

“Them and “Us” – We Are All Human 

We can all learn from each other if politics and tired old stereotypes which are churned out through oppression in and around the “autism world” then voices will and are most certainly going to be lost. The them and us scenario causes friction ASD (Autism Spectrum Disorder) and NT (“Neurotypical”) or vice versa.

We as human beings are all equal and when neurotypical  becomes a loaded word (spiteful, derogatory, other or sub-human etc) that is not right. I say people who aren’t on the spectrum myself. Inclusion is about everyone getting involved in the context of this chapter it means that both views are valid.

Conclusion 

All views and opinions wherever someone is on the spectrum or not should be taken into account that is because one can learn from the act of sharing each other views, what they mean. How do they differ? What are the similarities and having healthy look at the whats and whys.

Neurotypical? A Word That Doesn’t Make Sense?

What is an NT? There is no such thing in my opinion. We are all human and taking all realities into account is far more positive and inclusive than creating what I call man-made barriers we could from metaphorical perspective “holds hands” in this regards everybody has a story unique to  a view and/or viewpoints that are as equal and as valid as the next persons.

Conclusion

If someone calls someone a name that is meant to make them feel worthless that has knock on effect on their self-esteem and self worth “typical” doesn’t sound very nice and if the situation was reversed I am sure it would feel equally hurtful. When I talk about equalism I am meaning everybody. Setting good examples is a way move forward.

Militancy – When People Take Things Too Far 

That is true when people attack whether they are on the spectrum or not – one must take responsibility for their actions. That is what worries me there should be no single representation of autism even by people who are in a position of being an advocate on the autism spectrum. One can only talk about their profile and how autism affects them – the key is that their so many other different and diverse profiles.

Militancy creates too many barriers and shuts off a lot other people on and off the spectrum who have different ideas, profiles and presentations. Surely hearing different views is good?

Conclusion

If we talked and discussed our views in a manner which is respectful we may learn that we share things and have insights that are common – however one may learn that are viewpoints and ideals come from different areas this isn’t a bad thing but when views get extreme it has a “pebble in a pound” effect it causes problems for other whose view may be lost in the mix of extremism.

Autism Politics – The Two Extremes

You have people who are are curists and people who are culturists both demographics go to the extreme to get their points of view across to others – what saddens me is that both have points to say but the way in which they’re either presented and said are not practical nor respectable .Wouldn’t it be nice if people listened – I stand neutral believing that everyone is equal (you hear that a lot in the post I know) and human.

Fruit Salad Analogy Copyright D.Williams

Fruit Salad Analogy Copyright D.Williams

What is Autism?

Autism is different and unique for each person who has the it – it’s made of different “ingredients” that means that the overall profile is unique to that person how they process information, if they have additional learning disabilities or not, if they have food intolerances, auto-immune disorders and so forth – in other words it is a set of pre-existing conditions and has a “stacking effect” and a point of origin which in itself is unique to each person- Olga Bogdashina calls it Autisms  and Donna Williams calls it a Fruit Salad. That is why all realities of Autism are different and diverse.

Looking Towards the Future – Equalism and Egalitarianism

If one would strip all the militancy, bullying and aggression by people on and off the autism spectrum – would that create a bigger pathway of diversity? Would more voices be heard? More realities listened too and acknowledged? Would new ideas flourish? I certainly hope so. We are equal in this world and no one is above or below anyone else we all have our stories to tell.

Final Conclusion – Everybody Having A Say 

Every human being on earth has right to be listened too, supported, acknowledged, cared for a appreciated for being them and seeing their personhood. So by bringing everyone into the scene you don’t  have “them” and “us” you see and have different points of views for and by different people on the spectrum or not but equal in their validity, by not having extremism you having balanced acknowledgment of both agreement and disagreement.

Inclusion is Bringing a Diverse set of views from Different Places

  • People on the whole of the autism spectrum
  • People who are functionally non-verbal
  • People with autism and learning disabilities
  • People from different cultures and backgrounds
  • Parents, family members, carers and guardians
  • Autism professionals (neurologists, psychologists, psychiatrists etc)
  • Educational teams
  • Other services

Paul Isaacs 2015