Autism Spectrum: disability or superpower?

by Jun 27, 2020Autism as Disability0 comments

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Autism 

 

There are few other words able to provoke such a heated argument.  Deep, burning pain in BOTH the NAT person AND their close family at the same time.  The stigma or self-stigma of such a magnitude brings pain that is intolerable, and we defend our psyche using whatever means are available AND accessible to our fragile psychic selves hiding in the depths of the autistic body.  Unconsciously, we know stakes are high: our very survival is at stake.

When stakes are, literally, life & death (psychic and/or physical), humans regress: they temporarily forget the skills & the knowledge they have been working so hard to acquire, and once again they function at a much earlier developmental level, using psychic defences that belong to that level.

I will not say any more about this right now, but this is precisely why the debate of DISABILITY VS SUPERPOWER can be so divisive.

 

DISABLED – BUT BY PEOPLE

This position emphasises the view that is propagated by & large that Autism is a difference – NOT a disorder, disease or dysfunction.

Over the years, my own position has shifted.  I now PARTIALLY agree with this sentiment per se.

Only partially, because I believe in reality, this is a highly personal matter which cannot have a universal “TRUTH”.  The personal matter which is best characterised by a personal opinion, which – in turn – depends on many factors.

The most important among these are:

the “level of autism” (i.e., both the number and the intensity of the symptoms)

plus

both the number and the severity of associated (aka co-morbid) conditions, like:

 ADHD,

ID (Intellectual Disability),

Epilepsy, etc.

What boggles my mind is the increasingly popular view that Autism is NOT a disability.

Arguing that Autism is not a disability puts at risk our hard-won legal rights and protections under the various flavours of disability discrimination legislation, such as IDEA in the US or Equality Act 2010 in the UK. How can we possibly justify legal protections under disability discrimination law, if we are not disabled?

There’s a way to argue around that, by claiming that while Autism is NOT a disability, the autistic people ARE disabled, although not by Autism per se. Instead, it is theorised, the factors external to the autistic individual are what is disabling us. Chief among these factors:

  • the stigma of autism;
  • lack of accommodation for our differences;
  • the unfair treatment of autistic people by society at large.

In other ways, we are told there’s nothing inherently disabling in Autistic Spectrum Condition. It is the way we are seen & treated by others (i.e., stigma) that results in the reduced quality of life & the disabling limitations in our daily life (in particular, with regards to self-care & life-skills, as well as in the areas of life such as our education, healthcare & employment.

This is a deceptively convincing & attractive argument. On the surface, it’s perfectly plausible, hence it warrants a closer examination.

I invite you to join me in this exercise.

At this point, I should share more details about my health. Apart from ASC, ADHD & a mixed Generalised Anxiety & Recurrent Major Depressive Disorder, I have several non-psychiatric conditions. One of these is Diabetes Mellitus, the kind similar to the one found in kids. It means that I am diabetic due to inadequate amount of insulin produced by the beta-cells of my pancreatic gland. This is different from the diabetes beginning in adulthood, affecting adults with high BMI (at any point, from overweight to morbidly obese) and is characterized by overly active beta cells, trying to compensate for the raised levels of glucose in blood (aka hyperglycaemia) by increasing the amounts of insulin they release into bloodstream. Alas, the excessive Body Mass – ESPECIALLY lipotissue – raise body’s resistance to insulin, so the hyperglycaemia resists rather large amounts of insulin: both endogenous AND commercially available.  Hence this type of diabetes had yet another name: insulin-resistant or insulin-independent, whatever is the amount of insulin produced. Because of that, this type of diabetes is called Insulin-Resistant or Insulin-Independent DM.

let’s examine it through the lens of Insulin-dependent Diabetes – the condition that is both easier to comprehend (because it’s “traditionally” physical, affecting the body) and similar to ASC as “an invisible disability”.

I could argue that it’s not my insulin deficiency that is disabling, it’s the way it has been managed by the society around me. After all, if people who knew NOTHING about diabetes mellitus had not been insisting that I manage hypos at work in a way that was “nonsensical” to the endocrine specialists, I may have still been employed in the NHS, for better or for worse. But they did, so I am not.

Does that mean it’s the societal attitude, rather than the Diabetes per se disabled me?

No.

Disability is a lack of ability. Handicap. So, I invite you to take a look at the handicapping influence of DM. How exactly is it disabling me?

Is the influence of DM on my life limited to the social aspects of my life?

In other words, if I were to disregard all activities & skills that involve society, would I still be disabled by diabetes?

YES, I would, as a matter of fact.

Thought experiment: Diabetes

Here’s a thought experiment for you: leave me alone, on a remote island. This is to eliminate any potential influence of society. Just me & nature.

Leave a generous supply of provisions with me for a month. Place cameras around the island for recording my life with the aim to capture any evidence of handicap. Return in 4 weeks. Analyse the recordings. I’ll do my best to leave as much evidence for you as possible.

However, if you are hoping to seek any ad hoc information from me, you will be disappointed. By the time you return, getting additional information from me would require the skills of a coroner and a pathologist (and, maybe, a séance medium ? ).

The lack of insulin would kill me within 2 or 3 weeks – perhaps, even faster. After all, eliminating any influence of the society would mean withdrawing the benefits as well as disadvantages that the society has upon an individual life. As a result, I wouldn’t be able to benefit from one of the greatest medical advances of the 20th century – discovery & successful mass-production of insulin.

Once I convinced myself that the fundamental cause of my handicap in diabetes is lack of insulin per se, and not simply the societal attitude to the condition, I turned my attention to Autism.

Thought experiment: Autism
So, what is it: the symptoms and signs of autism OR societal attitude towards the autistic people that is fundamentally the reason for the disabling nature of autism?

THOUGHT EXPERIMENT: AUTISM…?

The answer to this question is, naturally, more complex than the answer in the case of diabetes.

Tony Attwood says that cure for autism is very simple: leave the child with Asperger’s alone in his room & close the door on your way out. And I agree with him there – at least in part.

Why in part? Because autism is not all about social interaction & communication differences.

In fact, sensory issues – not the lack of social skills or struggling with communication – is the major reason for the reduction in our quality of life.

Because 90% of autistic children have been reported to experience sensory processing difficulties. The Sensory Processing Disorder or Sensory Disintegration Disorder can have a profound effect on the wellbeing not only of the individual concerned, but also their entire family.

For example, if the father is struggling with hyperacusis, the routine family happenings, like the baby’s squealing or wailing will drive Daddy at the very least into another room, if not out of the house altogether.

On the other hand, if the junior is unable to cope with loud noises, the family will be avoiding any trips to the cinema; any supermarket trips, any concert, any major event, any large public gatherings, or maybe even simply going to a public place such as restaurants or museums. If one partner has hypertactility, it may destroy the relationship altogether. Just picture the other partner’s hurt feelings, “You can’t stand me! You can’t even let me touch you without wincing!”

Many symptoms & signs of autism are ultimately rooted in sensory processing & sensory integration irregularities.

These include many that we don’t even think of as “sensory” phenomena traditionally. The classic autistic meltdown, for example, results from being overwhelmed by ungated, unfiltered sensory “assault”.

How about not being able to maintain the socially appropriate personal distance, intruding into the personal space of people around you? That may actually be due to errors in our proprioceptive & vestibular systems! These two normally work together to locate your body in space, literally, relative to the ground AND to other objects, including other people.

So, what do you think is going to happen?

Will autistic symptoms per se affect my ability to function, after any potential societal influence has been eliminated from the equation?

Yes, I believe so.

My sensory experience may be modifiable by the restrictions & accommodations (or lack thereof) imposed by society. But my sensory processing difficulties did not originate in society.

My problems with the bright fluorescent lights, loud noise, slimy texture, spicy hot food, specific smells: these originated within and will all stay within.

So will my dysfunctional vestibulo-proprioceptive processing that manifests with my immediate vomiting & subsequent feeling dizzy, ill & disoriented for HOURS after even the shortest time (less than a minute) on most amusement park & fayre-type rides, such as roller-coasters, big swings, and all but the most gentle merry-go-rounds (these I can tolerate keeping the contents of my stomach down, even though I would still feel ill & sick).

In fact, I am unable even to watch these (or any spinning objects!) without feeling nauseous.

Another – less common, but not unknown in the autistic community – is the problem of fragmentation or non-integration of visuospatial information, manifesting as an inability to find my way even in a familiar place without step-by-step instructions/directions. Imagine, for 15 years you have been living just off the Ring Road of a small-to-medium size city, like Oxford. Over this time, you have been making trips into the city centre – on average, once a month. That is ≈ 180 (12 trips per year multiplied by 15 years) trips into the centre of a fairly small-sized city. And I do remember the places I visited, and the places I have gone past: whether walking, driving or riding a bus. I just don’t know how to fit them all together. Yes, I literally don’t know how the positions of the various buildings, sights, streets & landmarks relate to each other in the large space on the face of the earth that is called “Oxford”.

On the bright side, I am now aware of these deficits. I still shudder when I recall the poor innocent tourists I was confidently (mis)directing to various Oxford sights. I beg for your forgiveness.

Did I understand the significance of sensory issues until recently? Sort of, but only through the personal/family experience. I am hoping things have improved in the professional community, I do. But during my training in Child & Adolescent Psychiatry, there was only “general awareness of sensory issues”.

In other words, the gist of the message I recall from, say, 4-5 years ago, was this: autism often co-exists with various sensory hyper- and hyposensitivity profiles. If patients mention sensory issues, it might be worth considering ASD (or another neurodevelopmental diagnosis). On the other hand, if you do a diagnostic assessment for autism, remember to tick that sensory box.

I will be happily shocked if just one psychiatrist (who has no autistic friends or family members – including himself) – posts a comment indicating they have been aware of the significance of sensory issues for a long time now. Prove me wrong – make my day!

Society doesn’t help, of course. We’re squeezed into shared offices. Forced into open plan working spaces, full of fluorescent lights. We are mandated to wear the uniform made out of scratchy fabrics that has never been worn by any adult who either makes laws regarding these, purchases & distributes them or enforces them.

My oldest son went through an equally well-known prepschool in Oxford. Isn’t it interesting that the school uniform – the something supposed to be the great equaliser – was one of the first things that struck me as demonstrating INEQUALITY among British children?

Because my son’s uniform was UNIFORMLY (pun unintended, but kept anyway) made in the UK, and UNIVERSALLY made out of natural materials. The only exception was the modernised sports kit that was manufactured out of the super-duper synthetic fabric that was claimed to improve performance. Although all that my son & I cared about was the fact it wicked the sweat away from the skin a great deal faster that the old “all-natural cotton” kit, which made the boys literally – LITERALLY! – freeze when playing rugby on the snowy fields in winter months. (Yes, all 3 times it snowed in Oxford in the last decade!)
Meanwhile, I was trying to obtain the right to not wear the uniform, or – at least – wear a modified uniform, perhaps – for students at local primary who had few options other than the mass-produced scratchy synthetics from ASDA.

DO YOU ENJOY READING WHAT YOU HAVE DISCOVERED ON THIS SITE?  

DO YOU THINK OTHERS, IF NOT YOU, FIND MY TIPS USEFUL?

DID YOU FIND MY TIPS USEFUL?

CAN YOU SPARE $0.25 A WEEK TO PLEDGE YOUR SUPPORT? 

OR MORE?

DO YOU WANT TO SUPPORT MY MISSION?

DO YOU AND I SHARE THE SAME VISION FOR OUR WORLD?

 

Other people certainly can be a source of a great deal of sensory output.

But even in our imaginary scenario, on the uninhabited island, alone, we will not be protected from sensory overwhelm & overload.

Consider just these, off the top of my head, examples:

  • sun (light & heat sensitivity, sunburn if sensitivity is reduced)
  • wind (sound, tactile, potentially vestibulo-proprioceptive systems)
  • wild life (sounds)
  • ocean (sounds, tactile, osmoreceptors)
  • sand/stones/etc (tactile)

Of course, society has a role in creating or at least not removing handicaps for autistic people.

But, logically, I am unable to understand how a significant number of ND supporters can argue that it is only the society – and not autism per se – that is the cause of our disability.

Is my thinking flawed?

Is my logic suspect?

I would really appreciate your comments below.

Stay safe,

DrL.

P.S. If you want to discuss this – or any other – issue about Autism in more detail, and in privacy, without the fear of being attacked for your breaking with the dogma, you can do so by creating a FREE membership account that will allow you to post on the private forum on this site. I am moderating the forum, and anyone not following the basic rules of polite discourse will be 1) Warned; 2) Banned for a week and 3) Banned Forever.

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