Full Disclosure?!?

During my adult life I have had quite a few different jobs and career starts. I have had moderate successes and abysmal failures. I was never in a position to make a disclosure of my neurology. I was in fact just in the process of investigating and discovery of my autistic being when I lost my last full-time position. A position in which from an actual work perspective I was very successful at.

One of the positions I held over the years was that of primary teacher. At this time I was aware of my daughter being autistic and so was already on

the road to new knowledge and understanding in terms of the neurodiversity paradigm. I had a lot to learn and a long journey to travel.

I taught in primary school classrooms for four years. In that time I taught a number of autistic children both diagnosed and undiagnosed. It was a privilege to be a part of their young lives for the time they were in my care.

To Disclose or not to disclose that is the question.

Perhaps the most heartfelt question I was asked by the parents of these children was whether to disclose to the child that they were indeed autistic.

Alternatively was not the question but the determination not to tell the children the reality of their neurology. I believe this is a mistake. I understand the motivation and the good intentions behind it I think, however I can’t countenance this action as in the best interests of the child.

I am reminded of friends and acquaintances I have known over the years of my life who have discovered as adults, young adults and teenagers that they were adopted. It seems that it is common for the overwhelming sense in these situations is of betrayal and deceit. This is at times coupled with a sense also of understanding why they felt different within the family unit.

I think there are some parallels here in not disclosing to children that they are autistic.
The personal situation I was in was not one where I was in a position to be disclosed to, however, I was in a position to experience much of what the child who has that disclosure withheld from them.

A common reason for not disclosing is verbalised as not wanting to label the children. Not wanting to saddle them with a label that will limit them or have negative connotations.

This is a flawed argument. Children are experts at labelling each other, especially in the absence of an appropriate and proper label, which, for the autistic child often ends up being:

  • The shy one.
  • The weird one.
  • The strange one.
  • The idiot.
  • The nerd.
  • The geek.
  • The uncoordinated.
  • Friendless.
  • Idiot.
  • Crazy.

To name a few.

Children are also much better, in my opinion, in accepting and understanding difference and diversity when they are given modes and methods of understanding it. If they are able to associate behaviours, attitudes, responses etc with somet

hing that is a real thing, a diagnosis of autism for example then they are able to then make sense of why their fellow classmate acts in the way they do.

Once they have some of this understanding they can in fact develop, foster and build genuine, caring, and mutual friendships between the neurotypical or allistic children and the neurodivergent or autistic children. It is in fact a wonderful thing to see occur in a group of children.

It is my contention then, that without a truly compelling reason against it that full disclosure to the child should occur. Would we consider withholding a condition like cancer, leukaemia, or diabetes from our children? Then neither should we withhold a neurological reality from them.

I wish to goodness I had had a genuine and sense-making label for why I was different as I journeyed through my childhood. I may not have walked my childhood believing I was broken, wrong and destined for failure in life.

Coloured I guess by my childhood experiences and my teaching experiences I walk through life now as a full disclosing autistic. It is now a rare situation where I am unwilling to disclose the fact of being autistic to the people I associate with, work with, study with etc.

There are times when I may withhold that information. These times are when I am of the belief that prejudice will occur to me if I do, that I am likely to be ridiculed and discounted. It is however, in my experience, only a temporary withholding of that information. I lived for over 40 years pretending to be “normal” (whatever that means) I won’t now journey through life pretending I am not autistic. I just won’t do it. It will do me or those I associate no good at all.

When it comes to employment, I intend to enter any employment situation with full disclosure. If I am not given a position due to that disclosure then so be it. Perhaps it is discrimination, most likely so, proving it of course would be something of an arduous task.

The key point here in disclosing to employers or potential employers is

that it is wrong and ineffectual to complain that accommodations to assist are not provided if the employer does not know and understand why it is that they are needed in the first place.

Yes, I am out and proud as an autistic man. It may not be right for everybody but it is right for me.

My future is a bright future as an autistic man, doing what he can to achieve all he has the potential to do. It is becoming clear to me more and more each day I walk this planet that I am at greater odds of success in that venture as fully disclosing autistic than as an autistic man who is pretending to be normal.

I’m different not less. I succeed and achieve in embracing and living my best in that difference and not in pretending it is not there.

Impaired or Impaired…

Disabilities, differently abled, impaired, handicapped. There have been and continue to be so many words that can be used to label and categorise a person with a disability. There is no question that I as an autistic person am a disabled person. I contend though, that disability is not due to being impaired by physical or mental impairments but by the social construct within which I inhabit and go about making life.

To illustrate this idea consider a building and an entranceway. The entrance way is a narrow doorway which has 4 stairs leading up to it. This is the only entrance to the building. Now consider a person who relies on a wheel chair for mobility. They are unable to access the building. This person’s access to the building is not because they are reliant on a wheelchair, but, they are impaired

from entering the building due to the underlying attitude of society that builds an entrance to a building which does not accommodate for difference. It impairs those in wheelchairs from entering by using a narrow door and stairs. It is the social construct and the human constructed infrastructure which creates the disability not the physical impairment.

There are different models of disability. The most prominent being The medical model of disability and the social model of disability. It is often the medical model that our thinking emanates from rather than the social model. But what are these models and what difference does it make. Well, a huge difference actually.

The Medical Model…

The medical model of disability is an impairment based model that relies on a narrative of brokenness and need to be repaired to measure up to the so-called ideal of normality.

According to the medical model of disability, ‘disability’ is a health condition dealt with by medical professionals. People with disability are thought to be different to ‘what is normal’ or abnormal. ‘Disability’ is seen ‘to be a problem of the individual. From the medical model, a person with disability is in need of being fixed or cured. From this point of view, disability is a tragedy and people with disability are to be pitied. The medical model of disability is all about what a person cannot do and cannot be.

pwd.org.au

It’s very easy to see that in this model disabled people will quickly become disenfranchised and objectified. Very quickly to they become an entry in the liability column of societies balance sheet. This is a despicable situation. People are not object. They are people, human persons. Complete human persons with emotions, feelings, dreams, hopes, hurts, pain and joys just like human persons who are not disabled.

The medical model of disability is itself a liability to a progressive accepting positive society.

The Social Model…

The social model of disability takes a somewhat different view of disability and defines it in a far more, in my opinion, life-giving way. It promotes humanity, difference, and equality of all people. Disabled and non-disabled alike.

The social model sees ‘disability’ is the result of the interaction between people living with impairments and an environment filled with physical, attitudinal, communication and social barriers. It therefore carries the implication that the physical, attitudinal, communication and social environment must change to enable people living with impairments to participate in society on an equal basis with others.

pwd.org.au

The key here is that the social construct is what impairs not the physiological issue that the disabled person deals with. The social model does not decry the fact that there are real physical, intellectual or psychological issues that disabled people face, but that it is not those issues that restrict them from full participation in society, it is in fact the social construct which does that.

Let’s be clear a disabled person has the same human rights as a non disabled person. The very same right to pursue a career, a family, a dream. This should not even be up for consideration. But a long as we do not operate with an understanding of how the

medical model of disability impairs this, society will not be able to achieve this and the rights of people with disabilities will be at risk and people with disabilities will be at high risk of being treated as objects of society rather than subjects in society.

Physical disabilities are often easy to see and it’s simple to see how the physical infrastructure can be instrumental in disabling the person in a wheelchair for example, from fully participating in society. The invisible disabilities, often can go unnoticed, especially in how the social construct inhibits and derails the attempts of people with these disabilities to equally participate in society.

A personal perspective.

Employment success, career success and therefore successfully providing for one’s own needs, and the needs of their loved ones is a huge, a massive, implication for people with disabilities. As an autistic person I can fully relate to this. Employment has always been a massive struggle for me to negotiate and to be successful at.

I am an intelligent and capable person. I hold a couple of bachelor degrees, I am able to adapt to a range of mental and physical tasks well. I am able to master skills reasonably well and execute tasks with precision and often speed. I often describe myself as a jack of many things but a master of nothing, this is really a statement of having tried a range of career options but never mastering any of them.

The reality is that I have not mastered them due to the social construct rather than the ability to perform what I have been employed to do. I have never lost a position due to failure to complete the tasks assigned to me. I have always either been terminated or left due to impending termination, for failure in negotiating the expected social and workplace political expectations.

The task of obtaining employment is in itself disabling to me. The process of obtaining a position is inherently social. It is based on human interaction in a contrived and power unequal environment. This environment is often exacerbated by it being a panel of three or four others.

The reality is that my ability to be successful in that situation has little or no bearing on my ability to perform the tasks and duties of the position. How does answering contrived questions actually have any bearing on my ability to manage a classroom and impart learning to a group of 20 or so students? I don’t see how it does in anyway at all.

I am a qualified, and I believe, capable primary school teacher, however I have not been able to successfully hold a position in a primary school for more than a 12 month period. This has not been due to my teaching ability or teaching success, but due to my failure to negotiate the social/political environment of the staff interactions outside the classroom and additionally the re-interview process.

I am impaired in this situation by the expectation and attitudinal reality that I will and do understand the social rules, the nuanced communications and body language situations of the school. For example, I should know that when a superior requests my opinion on a matter that they don’t really want my opinion but that what is really going on is that they are ensuring it looks as though they have consulted others regarding the issue at hand. Or, even though it is understood that autistic people often struggle

with maintaining eye contact, the expectation that I do so remains in place, and so when I am unable to maintain this eye contact I am considered, rude, evasive, suspicious or devious, rather than the reality that I just can’t do it without causing myself intense internal turmoil and physical discomfort.

Enough of the personal sob story. I share it not to garner sympathy but to illustrate the point of how the social constructs failure to accommodate results in being disabled from full and equal participation in society.

Employment is a massive issue for Autistic people. Statistics show that even in regard to other cohorts of disabled groups that we fare terribly when it comes to employment success. The vast majority of autistic people are unemployed or underemployed. This is not due to an inability to work but an unwillingness of the world of work to put in place accommodations to assist us to do so successfully.

It’s time for a change. It’s time for the skills and contributions to be honoured and valued, despite the need for accommodations.

I am ready willing and able be employed and to work hard. I just need to find an employer willing to accommodate and support me to do so. I don’t think it is asking too much. Do you?

Definitions that maim and shame

First a pat on the back.

Reading and browsing through social media and the web in the last few days I am pleased to congratulate Dictionary.Com for their inclusion of the term Neurodiversity:

noun

1.

the variation and differences in neurological structure and functionthat exist among human beings, especially when viewed as beingnormal and natural rather than pathological:

recognizing autism as an example of neurodiversity.

At Dictionary.com

This is unquestionably a good thing. This should be resoundingly applauded. This is a great thing. A great step forward for the neurodiversity paradigm. Many neurodivergent advocates have worked and spoken for neurodiversity to be seen as a “normal and natural” part of human society. And it is.

Certainly this is a great step forward. At the sam time though we realise that it is just one step and much work still must be done. The idea that being neurodivergent is merely a natural variant of the human condition like being left-handed is far from mainstream. Much advocacy is still to be done.

In Contradiction:

In the very same online source as the above we see a horrendous, hurtful and extremely negative definition of autism itself.

noun

1.

Psychiatry. a pervasive developmental disorder of children,characterized by impaired communication, excessive rigidity, and emotional detachment: now considered one of the autism spectrum disorders.

2.

a tendency to view life in terms of one’s own needs and desires.

www.dictionary.com

There is just so much wrong with this definition. It’s simply terrible. Firstly being autistic is not exclusive to children, I happen to be a 45 year old adult autistic man, I know many other autists too of similar ages. Autism does not disappear magically when one reaches the age of 18.

Being autistic is a state of difference, not a state of impairment. It must be remembered, and remembered very clearly that the statements here are in comparison to a so-called normal. What is that normal anyway and is there actual a single person living in the world that would meet all the criteria of this so-called normal? I suspect the answer is a resounding negative.

In terms of communication, rigidity and emotional detachment. It is not deficit or impairment it is difference and divergence. For as long as we

view these issues as issues of deficit and impairment we will continue to fail to acknowledge and uphold that autistic rights are human rights.

The definition listed as 2. here is despicable. Here dictionary.com happily wrap autistics into a single category of selfish people who have no concern for the needs and desires of others. Never have I read anything so far from the truth. It is hurtful. It is hateful. It must be drawn attention to. It must be changed.

The failure of dictionary.com to listen clearly to the autistic community is highlighted further in this entry in it’s “usage note”:

Usage note

Rather than talking about an autistic or autistics, it is better to use phrasessuch as a person with autism and people with autism

Zero consideration that there is variance in this idea. Zero consideration that the autistic community finds this terminology offensive and hurtful. The autistic community has spoken loud, long and continually about this issue. We are not people with autism. I am not a person with autism. I am autistic. When I gather with other autistics we are not people with autism.

But what…

I suggest we latch on to the great definition provided by Nick Walker a great advocate in the neurodiversity movement.

Autism is a genetically-based human neurological variant.

neurocosmopolitanism.com

Neurocosmopolitanism is definitely worth a visit. A great site with lots of wonderful information.

I call on my readers to challenge dictionary.com on this issue. Help raise the bar and change the negativity, the pathology of impairment into the celebration of difference and divergence.

Autism is a noun. I am not a noun I am a person. I am Richard Johnson Âû a proud autistic man who is different not less. I am neurodivergent not pathologically impaired. I am disabled not by impairment but by a social construct of what normality supposedly is. I am wonderfully neurodivergent. I am wonderfully different and divergent, I am different, I am not less.

I am autistic and I am proud to be me.

Autistic it’s not just a word it’s an identity.

Still we need to say it. Again and again we need to say it. Over and over we have to say it. It’s something that should not be. It should not be that how one chooses to identify oneself, has to be justified, has to be explained, and to those who claim to be allies, supporters, friends, therapists and doctors. It’s just not Okay to take what I call myself and tell me it’s wrong, it’s offensive and I need to change it. Autistic is not just a word it’s an identity.

I have written about this issue before Identity First Please and Language Matters. I feel somewhat like it’s a case of me ranting on again about my pet issue. That’s true to an extent, I suppose. It is. However, it is the reality that to make change the message has to be repeated again and again. It’s truly unfortunate but it seems the case that this is an issue that falls into this category.

I am autistic. I do not have autism, I am not with autism, I am not suffering with autism, I am not those things I am autistic. Proudly so. When I hear the phrase “person with autism” I imagine someone carrying around a bag with autism in it. When I hear “a person who has autism” I imagine someone holding something in their hand like it’s a possession. When I hear “struggling with autism” I imagine someone walking around with a giant ball and chain attached to their ankle.

I am autistic. It is a defining integral aspect of my identity. Everything I do, I do as an autistic. Everything I think I think as an autistic. Everything I feel I feel as an autistic. It is a pervasive part of me. It can not be separated from me. I do not have it, I am not with it, it is me. Not all of me, but yes me. Me Autistic me. Autistic, autistic father, autistic Christian, autistic thinker, autistic runner, autistic writer. Everything I am is an autistic thing.

The thing is that autistics generally have chosen to identify as autistic, rather than as person with/has autism. It is not autistics generally that are advocating to not use this language. It is the helping professionals, the parents and siblings, the therapists, the disability rights

movement. The thing is this is a problem because on the one hand these people claim to support and help, but on the other hand sideline and silence the voice declaring the preference of the autistic moniker. This is a problem. A huge one. How can it be that it’s okay to not listen to the declarations of the people you supposedly help and are allies of.

Yes I do go on about this. I know. But I believe it is important and essential. I long for a time where autism professionals, autistic allies and autistics can all listen respectfully to each other. That all the voices can be heard, a conversation occur and that autistic self-determination can be real and not need to be a fight.

It must be faced by we autistics, that, families, parents, therapists, etc, are generally speaking wanting the best for us. It must also be faced by families, parents, therapists etc, that, autistics have a lived experience insight into their reality, that is unequalled, special and must have primacy in the determination of life choices for autistics.

All the perspectives can go into the mix. The lived experience of the autistic can be informed by the professional experience of the therapists, the love expressed by families and allies, and of course the insight of parents. It goes without saying that these inputs are important and valuable, however, they will never be respected as long as the autistic voice, the lived experience of the autistics is discounted, sidelined and minimised.

It is possible and vital that the autism and autistic communities work together to seek the very best outcomes in all aspects of life for autistic people. I believe that an important first step that the autism communities can take is to respect the choice of the autistic community and give honour to the use of identity first language.

By referring to us as autistic. To call us autistic, to describe us as autistic are in fact things that go a long way in communicating that you do indeed respect us, respect our voice, respect our wishes and truly seek the best possible life we can have.

Person with autism is justified at times with the statement that the person must be seen first. I get where this is coming from, but, in reality if it requires language use to see me as a person then I am not being seen as a person at all.

I am a proud autistic, please respect my choice to identify as such.

Your thoughts?

ASD Three Little Letters

Listen to our voice

The autistic voice

allow its tones and registers

to make their mark

to say resoundingly

we are different, yes.

different not less.

Definitely different.

Definitely not less

ASD they call it.

ASD three letters that

fall so easily from the the lips,

of therapists, Drs, educators parents….

ASD three letters, that,

bring with them so many,

preconceptions, judgements,

so many stereotypes.

Autism Spectrum Disorder

No No No.

I am not disordered.

I am not sick.

I am different!

ASD three letters.

But with one little change.

Difference not disorder.

Autism Spectrum Difference.

Let’s call it that instead.

Do we call Einstein disordered?

Bill Gates, Steve Jobs?

No we call them eccentric,

No we call them different.

What about Dan Ackroyd.

What about Daryl Hannah.

And Tesla — There’s a big name!

Would we call them disordered.

No Different Not disordered.

Different Not Less.

Not Prosopagnosia but…

If you’ve read the previous post you will know that I spent a couple of days at University of Queensland doing some neuropsych testing. It was a very intensive and exhaustive experience. It was also interesting and enjoyable. I am more than glad to be involved in it. The particular research project this was connecting to was in regard to the study of the Corpus Callosum,

which is, the largest white matter structure of the brain. It is a bundle of 250 million or so neurological connection that cross the midline of the brain.

This is very important research, the rare conditions Agenesis of the Corpus Callosum and other Disorders of the Corpus Callosum are very rare indeed and impact a very small group segment of the human population. They are no less important than any other group and so any research to assist in understanding their condition is extremely important.

This is not a condition that effects me personally, but it does effect my family as one of my family members has this condition. They were born without this vital part of their brain physiology.

Having made that point, I want to talk about the issue of Prosopagnosia, or face-blindness. Wikipedia defines this condition as:

Prosopagnosia/ˌprɒsəpæɡˈnoʊʒə/ (Greek: “prosopon” = “face”, “agnosia” = “not knowing”), also called face blindness,[1] is a cognitive disorder of face perception where the ability to recognize familiar faces, including your own face (self-recognition), is impaired, while other aspects of visual processing (e.g., object discrimination) and intellectual functioning (e.g., decision making) remain intact.

This is a very real condition that afflicts some autistics. It’s not a thing that I have ever really had to consider personally. I don’t really have difficulty in recognising faces. I’ve never felt that I have at all, and I have not really experienced situations where people expect me to recognise them and I don’t.

Face-blindness is a difficult thing for those that deal with it. Imagine the challenge of not recognising your family members and close friends by looking at their face. I imagine there would be many occasions of embarrassment and explanations needing to be made.

For an excellent explanation of this condition please watch the below video by Amythest Schaber of Ask and Autistic.

https://youtu.be/qREQlELyH40

I discovered that, I don’t in fact look at a whole face, I don’t see a face as a whole but as a combination of different features. This was a real surprise t
o me, and has left me thinking about it over the last few days.

The activity involved looking at a face and then matching that face with a group of other faces. There were about six other faces, one of which
matched the original. I found this activity a lot more challenging than I expected it to be.

The key thing I noticed was that I wasn’t able to look at the face and then the other faces and easily make the connection with the correct face. I noticed that in fact what I saw was a bunch of individual features, a set of eyes or a chin, or a pair of ears.

I then found I had to take that set of ears or eyes or that chin and find them in the other faces.

The activity followed up with an activity which was similar, yet quite different. I was in this case required to identify not just the same face but also two others which were the same but facing a slightly different direction. This was actually very difficult.

Clearly, with my history of recognition of my family, friends and aquaintainces this condition is not an issue I have. I wonder though now is there a spectrum within this condition too. A spectrum of how well we are able to recognise and identify faces. I suppose it is a possibility. Something of course people far more qualified than me would be able to speak to with far more insight. I do wonder though of course.

This is a really important issue. Something the public should be educated about. Just as we are educated about other aspects of disability we should be on issues like this. Just as we would not question a person in a wheelchair needing particular accomodations and supports in their daily

life, so we should not question if a person with Prosopagnosia’s need for accomodation and supports to recognise those they encounter in their daily lives.

Next time someone you know, or feel, should recognise you doesn’t before you get offended or upset, take a moment to consider that they may just not be able to for real reasons beyond their control, and not just because they have not made an effort. Have a think abo

Let the Testing Begin

In a dorm room in a University College late on a Monday evening I reflect on a day that has probably had a little bit of everything in it.

My daughter sleeps in the dorm room next door. A shared bathroom between us. We have had similar days I think. We are 2000km from home in the middle of participating in brain research.

We began our day with an early morning trip to the airport, complete with the usual little bits and pieces that go with that. Negotiating the traffic, taking the correct exit to access the correct car park. Finding the courtesy bus to the terminal, getting off at the right terminal. Negotiating the security scanners, thankfully no removal of shoes or belts or other paraphernalia was required. There was no explosive checks or any of that palava.

We found coffee, we found our gate and we waited for boarding. We had separate seats so we were prepared for that eventuality. We knew we were to be in the centre seats of the row and were expecting to have to deal with that. For my girl, this seems to be something she takes in her stride. For me not so much.

Wherever I go to a venue I always attempt an aisle. I get quite anxious and panicky when in the middle of people. I was reasonably close to the front of the plane, I counted that as something of a consolation to having to sit in the centre. Thankfully the person on the other side of me was already in place and I didn’t need to concern myself with the getting settled and then having to move to let them in scenario.

As I sat I was delighted to discover the plain equipped with the headrest screens so I could at least plug in my noise cancelling headphones and immerse myself in a movie. Incidentally I watched Paper Towns, I enjoyed it very much. What I hadn’t counted on of course was the eventuality of both of these men having a need to constantly extend their elbows.

This may not seem like much but it did mean for me a constant heightened awareness of that fact which on the wrong day and time can be quite difficult to manage and push me towards meltdown responses. Thank goodness for the immersion in the screen. I am quite convinced that was a real factor in my managing the situation well.

Arrival at Brisbane was seemless. Straight into a cab, and arrival at the university ahead of schedule. The next hiccup left the cab driver waiting for me, as I waited in the foyer of the University building for the person I was meeting to return from morning tea break to pay for the taxi. That was a little stressful but thankfully short-lived. Actually I think the receptionist was a little more stressed about not being able to raise her as I was.

After some consent form completion I was off to find the dorm room and my girl off to the first part of the testing. Three hours of a neuropsychiatric assessment. She seemed to take it in her stride when I caught up to her. I was needlessly concerned how she would manage the stress of it all.

I had a bit of downtime before it was my turn. I found my way over to the psychology unity and prepared myself for my three hours of testing.

As I prepared I wondered to myself, what if they assess me and conclude I am not autistic after all. I chuckled at this thought, recalling of course that this was a research assessment and not diagnostic and they would not be making such judgements. But nevertheless it did occur at some level.

I imagine such thoughts are throwback to so many years of self-doubt and wondering of what my identity and place in the world were.

Three hours of psych assessment is tiring. Hours of answering questions, identifying emotions, remembering words, pattern recognition and mental arithmetic take their toll. Even when it is something you enjoy.

I emerged, feeling like an old worn out sponge ready for recycling.

Even though this takes its toll in the energy stakes, I have to admit it was kind of lovely and wonderful to sit through an experience and have your skills in these areas acknowledged and applauded.

We head back tomorrow for stage two, another two hours for the two of us. My girl also has an MRI, so is looking forward to some time in the big tunnel. I get to visit the vampires to donate some of my red stuff to the archives of scientific investigation.

Whilst it is my hope and dream to be involved in co-produced research through such wonderful organisations as Autism CRC. It is an honour and a privilege to be a part of research that looks into the questions surrounding the Corpus Callosum, that largest white matter structure of the brain that science seems to have so little information about so far.

The unknowing response

A terrible day for the world, a doubly terrible day for the nation of France. Terrorists dressed in suicide vests blowing themselves up and along with them hundreds of people. It is a despicable act. An act wrought out of some ideology that I simply am

unable to fathom.

I simply am unable to understand how a human being can believe that blowing themselves up is a way of obtaining justice for a people, freedom from oppression, or change in the state of national affairs. I just don’t see it. It is illogical. It is nothing short of horrendous murder.

I contend we shouldn’t refer to these horrible acts by radicalized people as suicide bombings but simply as murderous bombings. Because that’s what they are. A murder of innocents that just has the bomber as collateral damage.

My response to these events is always horror and disgust. I abhor them and get angry about the world we live in that creates such ideologies and feelings. But I do see that I have a somewhat different response to these events than many others. I suspect this is something to do with being an autistic. But that’s just what I think, it’s not something I can say definitively really.

Emotional responses, and emotional feelings and expression are always different and difficult to interpret and express at times. I wrote about this more fully in a post called Emotional Dissonance.

I see family members, acquaintances, friends and colleagues wearing their hearts on their sleeves, being extremely impacted by such events. My response is different. Somewhere inside me I think I hold that emotional response within me and it leeches out in different ways at different times.

I suspect that this is the kind of thing that allows autistics to be labelled as lacking empathy, uncaring and unkind. But all of that is absolute myth and rubbish. I emote deeply, I feel so deeply on things that to express that would be something of an explosion of emotion that would be like the eruption of a Mount Vesuvius. I suspect there would not be many people who would be up for being around such an outburst of emotion.

One thing I notice about my own emotional responses, when events like this or other disasters or events is that I seem to respond more demonstrably to events, feelings and issues portrayed in far more trivial settings with much more raw emotion.

A lovers tiff on a sitcom, the death of a character in a book or movie and I will be quite the mess, tears rolling down the face and me sobbing. I wonder if this is a situation of me, perhaps subconsciously exerting and expressing in a somewhat safe way the underlying, deeply felt pain and sadness that is unexpressed in the face of obvious traumatic circumstances like these terror attacks today in France.

This is just some thoughts about the unknown response I have to these events. Responses that are often on my mind around these times. As my mind wonders to itself, why aren’t I more impacted by this terrible thing. Why am I just seemingly so outwardly cold about it when I know that I feel it deeply in my soul.

I don’t know the answer, but perhaps what I have shared above is a glimpse of what may be part of the answer.

What’s the big deal with handwriting anyway.

For the majority of human history it seems, that most of the population writing and reading were not skills of the majority. It should come then as no surprise that it is not easy or natural for humans to acquire and master the skill of making coherent, legible and clear marks on paper to convey what it is they are seeking to communicate.

Of course it is the way of modern society that the written word is an absolute key part of how we disseminate information between ourselves. Whether it is between friend or foe it is the written word, in some form or other, that we use to communicate.

We should remember though that it was the invention of movable type in a similar period to the sparking of the birth of the protestant christian church in the time of Luther, Swingli and Calvin that was the catalyst for this abject change in society, which was until thin largely illiterate and functioned very much as an oral society.

The bulk email is perhaps a modern equivalent of the town crier of old.

This thoroughly modern incarnation of society has us all toddling off to school somewhere between the ages of 4 and 7 to begin the process of mass socialisation, coupled with the task of becoming literate and numerate contributing members of society.

The underlying attitude is that we can all, generally speaking, learn to read, write and rithmatic. Indeed it is these words that sparked the idea of learning the three RRR’s. Ironically of course only one actually does start with an R.

As we have built our knowledge since this monumental shift, we discover that this belief that all can achieve these skills, is found to be wanting. Words such as dyslexia, dyscalula, dyspraxia to name a few have become a part of our vocabulary. In this post I would like to consider just one of those words from a personal perspective. Dysgraphia.

The medical dictionary from Oxford Dictionaries is:

Inability to write coherently, as a symptom of brain disease or damage.

More helpful is the Wikipedia entry:

Dysgraphia is a deficiency in the ability to write, primarily in terms of handwriting, but also in terms of coherence. Dysgraphia is a transcription disability, meaning that it is a writing disorder associated with impaired handwriting, orthographic coding (orthography, the storing process of written words and processing the letters in those words), and finger sequencing (the movement of muscles required to write)

My writing partner Tricia recently wrote a great piece on how this relates to her son. Mightier than the Sword. This piece will be more focused on my personal experience as a child and indeed it’s influence into my adulthood.

It’s February, 1981, Grade 6, Kareela Public School. Mr Hamilton’s class. Six years of primary schooling have gone by for me. In this my seventh year, maybe it will be a bit different. Handwriting class. Absolute horror time for me.

That’s not how you hold the pen Richard…

Hold that pen properly Richard…

You’re left-handed you will always be a messy writer…

Memories of those lines flood my mind as I open my fresh, new, pristine Modern Cursive Handwriting book. It’s a whole new character set. A new font, if you like, all in the class are in the same boat. Or so I thought.

We all sit ready, eager to learn, eager to successfully master this skill of running writing. I had endured being in years past, the only one still using a lead pencil when all others used pens. Not being allowed to use the pen because of my illegible scrawl.

I had endured the ridicule of teacher after teacher and the laughter of cohort of students after cohort of students, in all four of my schools to this point. I was even with all of this potent in my mind, ready, to give it my very best effort.

The school booklist has specified particular pens, pencils, erasers, etc that we children were all to be armed with for the new school year. My mother, surprisingly, had conformed with this list and provided it for me to the letter. I really believed I was in with a chance.

As I sit with my Pental Rollerball pen, doing my very best, to form my very best letters, I hear the roar of Mr Hamilton over my shoulder, declaring my work to be disgusting, messy, illegible, horrible. A ruination of my new and wonderful Modern Cursive Book 6 text book.

Devastated, I cringed, I cried, and I suppose in a sense I gave up ever believing I could be able to handwrite, whether in printing or running writing, in a legible fashion. Those Pental pens, so distinctive with their green barrels and coloured bands on the tip, and silver labelling, have never failed to bring this potent moment back to mind. It was if nothing else a pivotal moment.

But 35 years later, I ask, what does it matter about handwriting anyway. It really is a legitimate question. Hear I have tapped out around 800 words to this point all perfectly legible. Able to be consumed on a myriad of devices, Desktop computers, Laptops, Tablets, Phones, e-readers, or indeed printed on paper.

My issue with writing, was in reflection perhaps, a function of Dysgraphia. I’m not in a position to declare this with absolute confidence, but it seems to ring true for me. It has only been as I have written on electronic devices that I have discovered something of some natural skill with writing.

I am told reasonably regularly now that I am a gifted or talented writer. If those of you who have expressed this to me could see the broken little boy back in sixth grade and understand just how much those comments mean to me, you would perhaps see the lift in my spirit and confidence you have provided. I am ever so thankful for this.

But back tot he point.

I believed I was a hopeless writer. I believed this because I was so incredibly focussed in the seemingly impossible task of making legible marks on the paper in front of me that there was never a moment to even allow my mind to construct and develop sentences, paragraphs, stanzas and verses that could convert meaningful expression to the workings of my mind.

Over the years I have made many efforts to transform my handwriting to no avail. I have worked on correcting my pencil grip — fruitlessly. I have purchased and completed handwriting exercises in the hope that practice and repetition would win the day. It did not. I have adjusted the size from big, to smaller, to tiny in an attempt to improve legibility — again fruitlessly.

Over the last year, I have discovered that my issue, my failure to ever submit a passable piece of creative writing in my school career was due to the function of putting the marks on the page, rather than my writing ability. It has been somewhat of an epiphany for me. In reflection I have realised there was a bunch of things working against me:

  • Fine Motor Skills — I just didn’t have good enough skills to make legible writing.
  • Pencil Grip — Holding the pen with the correct grip was extremely uncomfortable, even painful and when doing I found it physically impossible to form the letters. Holding it in my unique unorthodox grip enabled me to at least form the letters even if virtually illegible.
  • Strength of Grip — I held the pen extremely tightly resulting in quick fatigue and reduced dexterity of movement.
  • Pressure of pen to paper — The pressure applied to the paper was significantly greater than others it seems, but trying to reduce this would result in spidery marks that didn’t clearly show on the paper.
  • Left-handedness — The act of dragging the arm across the page covering what had been written added to illegibility, particularly when a pen that smudged was used.

I’m sure there are others I may have missed but those five are a good representation of the difficulties I had. Whether it is technically dysgraphia or not, is not a huge concern to me. I’m happy to say I had a real issue with handwriting that was never recognised properly by the educators responsible for me. Perhaps the time was such that not much could have been different. But this is not the case today.

There are so many options for alternate methods of producing the written work required of students that any issue such as dyspraxia simply should not be something that hinders the learning of children. It really shouldn’t. There really is no excuse for alternate methods not being available.

And let’s face it. What’s the big deal with handwriting anyway. How often do you actually need, in modern society, to actually pick up a pen or pencil and handwrite something. There are a couple of things we need to be able to do.

  • Sign our names, though the legibility of that is largely irrelevant.
  • Fill in a form
  • Write a to do list

I can’t think of many other times we are actually required to use handwriting outside of these. Sure there will be times we choose to but not many we are actually required to.

And we see more and more forms becoming filled in by electronic needs and even if we need to physically sign them we print and then sign the completed version, such that the only pen used on them is perhaps the signature, along with, possibly, the date.

We must stop hindering the education and positive outcomes of those in our care by insisting they be proficient in what is fast becoming an archaic skill.

Design and Aesthetics or fit for purpose… Sensory haven or sensory assault…

Over the last couple of years the local shopping centre has been undergoing a facelift, a big extension. There is some really great stuff happening and it will be exciting to see the finished result. New shops, a link up to the local railway station making it a little safer to travel and some great new eating and coffee shops too.

One stage of this development opened to the public in the last couple of weeks. The new shops are lovely, new, bright, airy. A fresh feeling about them. it’s a nice pleasant feeling to wander and see the changes, to see what some of the new retailers are.

One part of this new opening is the new library. I was looking forward to this development. I am quite a fan of libraries. They tend, mostly, to be havens of quietness, escapes from the hustle and bustle of the noisy shopping centre, a refuge from the sensory assault of noisy environments and multiple strands of communication, buzzing fluorescent lights, crowded unpredictable walkways.

This new library is a three level building, the actual library occupies the middle level. The local council has a business hub space on the top floor, the bottom floor is a mix of an art gallery space, some areas for sitting to read or chat with friends complete with power to tables to plug-in devices to charge, and a cafe space.

On seeing this new library space I felt positive and quite excited about it. I went to visit it on the weekend with two of my three girls. We travelled the stairs to the middle floor to check out the library space.

It’s all over the place. Shelves running in all different directions, no clear defined service space where you can find the library staff to assist you as necessary, but rather scattered little desks. Seemingly a lack of order in the organisation of the library resources.

But…

Some lovely spaces to sit and work on your device of choice, including what looked like a couple of lovely little haven spaces enclosed little hubs with a central table and seating around it. Some comfortable chairs to relax and read, wi-fi access in all areas, some good old-fashioned tables and chairs for the traditionalists, like me.

I felt I could pretty much live with the chaotic layout with the quality of the facilities. I thought to myself, okay, I can live with this, this could be my new haven space to work, complete with good coffee right downstairs.

Oh how wrong can one be.

What do you think of when you think of a library, I wonder?

Perhaps I am getting old but I think of almost silent spaces, where other people’s concentration needs are respected, and if not enforced by fierce librarians. Rows of tall shelves well-ordered and labelled full of books. The click clack of shoes on the floor, and the absence of chatter and unnecessary noise.

Oh how times have changed. It seems the desire to be modern, aesthetically and architecturally novel seems to trump the concept of functionality of space for the users.

I went for another visit today. I took my eldest daughter with me, both armed with laptops and ready for some quiet solace. We started with a coffee together in the downstairs cafe. Nearby was a group of women meeting for coffee, enjoying the company of friends, chatting and laughing together. Nothing wrong with that of course, except for the cavernous reverberation and amplification of those voices to the extent they were bouncing around my head with ferocity.

I briefly thought to myself. Well this is certainly not going to be a quiet space here in the cafe.

We enjoyed our drinks and made our way upstairs. I found a home in one of the aforementioned pods. Set myself up, popped on my noise cancelling headphones and

fired up the laptop. My daughter found a place at a table and did the same.

It was now that I discovered that the true failing of this wonderfully aesthetically pleasing new building. The stairs that link the three levels run pretty much up the centre of the building, in an open channel. Creating in a sense a chute. A chute that seemed to draw every sound from the bottom of floor of the building and push it up to leak with seemingly amplified volume into the space of the library.

I sat dumfounded and amazed that sitting in this pod, with my noise cancelling headphones on and some quietly soothing music playing that the voices of those happily socializing women were as clear to me, or perhaps clearer than they had been when I had sat drinking a coffee two tables from them.

A persisted, hoping it would quiet, but alas, the next phase of the morning was the toddler story time. This occurred on the other side of the floor to where I was situated. And again the noise of this reverberated around the room making it near impossible to concentrate on the work I was attempting to do.

Clearly no autistic people were consulted or considered in the design of this great new building. Clearly the idea of this modern space and the look of it are far more important to those running the project than if the building is fit for the purpose it is to fulfil.

I don’t consider myself a stick-in-the-mud and don’t think that the totally silent library is necessarily a practical thing in the modern tech world we live in, but, this situation is quite ridiculous.

I consider my auditory sensory issues to be fairly mild in comparison to many other

autistics, yet it was unbearable to me. I can’t imagine the overloading experience it would be to some of my friends. Likely meltdown or shutdown inducing.

I share this story of my day, to ask, how do we manage to ensure that neurodiversity and sensory sensitivity could be considered in the design phase of projects like these. There are so many places where we the sensory assault is very difficult to manage. Isn’t it perhaps time that autistics and sensory sensitive people were considered.

What is the way forward here. How do we stop this from continuing to happen and more and more places that were something of a haven for autistic and sensory sensitive people are wiped off the face of the earth.

I would contend too that a sensory haven for autistics is also going to be a pleasant space for non-autistic people to take time out, take a break from hustle and bustle of shopping and errands, to sit and do some work or reading too.

I look forward to hearing your points of view on this.