High versus Low Functioning depends on the nature of the ‘autism fruit salad’ underpinning the diagnosis with autism.

These ‘autism fruit salads’ can be standard or exotic, simple or complex, small or large quantities or pieces, separated contents or very mixed up.

High Functioning Autism

Asperger’s is usually when someone has Emotional-Social Agnosia and so cannot process facial expression, body language or intonation.
This restricts their involvement in the social-emotional realms of life so they compensate via intellectual interests, pursuits and abilities.
If they also have Simultagnosia they may struggle to process when two people are speaking with each other, tend to be visually rather mono-track, struggling to multi-task. If they also have some auditory agnosia, they’ll find that fans and external noises interfere with their ability to understand verbal information. If they have Dyspraxia or Dysgraphia, they’ll be clumsy, have motor planning problems and poor handwriting. Some will have face blindness, making it difficult to make or keep friendships. Being more stressed than those without information processing challenges, they will be more prone to sensory hypersensitivities than other people.

If they ALSO had oral dyspraxia, speech apraxia, Selective Mutism or learned dependancy leading to late speech (ie not speaking by age 4) then they would speak later than those diagnosed with Asperger’s and some may be diagnosed as HFA even if a percentage of non-autistic children also won’t speak until age 3-4. Although if verbal language is clearly normal at the time of diagnosis and shows no signs of significant ongoing language processing disorder at the time of diagnosis, early history of late speech by age 3-4 would likely not change the diagnosis from Asperger’s to HFA. The more present signs of significant ongoing language processing disorder at time of diagnosis, the more likely the diagnosis will be Autism rather than Asperger’s Syndrome. Whether this is High Functioning Autism (HFA), Low Functioning Autism (LFA) or in the Moderate range midway between the two, will depend on the range and degree of functioning challenges at the time of diagnosis. Some people in the LFA group move into the moderate range and may have some skills in the HFA range. there have been reported cases of some in the HFA and even Asperger’s range who have later ended up functioning in the moderate or LFA range due to breakdown, substance abuse, acquired brain injury, neuroleptic abuse, brain infection, or severe CFS.

So what is so called Low Functioning Autism?

The levels of motor planning problems with Dyspraxia could be so disabling as to be on a par with mild-moderate Cerebral Palsy.
They may have all the same agnosias but additional Semantic Agnosia, Form Agnosia, Associative Agnosia, Face Blindness, all of which may make them significantly meaning blind and struggle to learn visually as well as alienated from faces and finding people interchangeable if not for smell, tone and movement and this will make these people LOOK more autistic, be more likely to remain uneducated because pictorial learning won’t be accessible for them and without the capacity to externalise thought through the use of gesture, typing, or representational objects, they may not even know of their own intelligence, let alone others knowing of it. If they have Apperceptive Agnosia, they will also struggle to draw which may lead others to imagine them as retarded even if they can produce beautiful abstract works.

If they also have not only auditory agnosia effecting the perceiving of non-word from word sounds, but also Auditory Verbal Agnosia and Visual Verbal Agnosia, they will also be meaning deaf to what they hear as well as meaning deaf to what they read – yet often still able to ‘scan read’. This will commonly lead to either no speech or ‘dysfunctional speech’ (ie Semantic Pragmatic Disorder) and avoidance of reading, or fluent reading without comprehension. Both of which can lead others to presume mental retardation, emotional disturbance etc. It may also lead them to be presumed incapable of typing, even though expressive channels may actually still be relatively intact. If the person also has Alexia, they may be unable to perceive the written word as made up of letters and if this is combined with other significant visual and verbal agnosias they may struggle to demonstrate their intelligence through typing.

If the same person also had significant gut, immune, metabolic disorders which lead to ongoing brain toxicity, fatigue or being brain starved, this would reduce that person’s functioning level until these are addressed. The style with which meaning deaf-meaning blind people with autism learn will be more likely to be kinesthetic, musical or logical rather than visual-verbal, meaning they are less likely to be accomodated in mainstream educational settings. If they are also solitary and not social learners, the degree of their challenges will increase this and solitary learners are already poorly accomodated in most educational programs.

Similarly if the same person had significant untreated co-morbid mood, anxiety and compulsive disorders dramatically channeling their resources into exhausting self management at best, chaos at worst, this would greatly reduce functioning until treated.

If the same person also had severe Hypotonia they would be very floppy in their body, easily fatigued and if combined with Tactile Agnosia, Finger Agnosia or Pain Agnosia, they may appear to have little sense of their body, little identification with it and a poor relationship between volition and action through the body. Combined with severe Dyspraxia and Simultagnosia, they may also be unable to experience body messages relating to toileting or switch perceptual channels when involved in another task in order to attend to toiletting. Where this is taken as reflection on their intellect this will usually lead people to presumption one is low functioning if not mentally retarded.

Chronic stress, emotional dysregulation and burden on information processing will put up the tempo of not just sensory hypersensitivities but also any natural personality trait. Those with extremely large, complex ‘autism fruit salads’ will be more likely to display a range of personality disorders as their natural personality traits display in the disorder proportions for each trait. As these then become labeled ‘the autism’ it can escalate the same issues if the person feels their personhood is being devalued.

Because those with more severe challenges struggle to manage on many more simpler levels, opportunities for the environment to take over, outshine, pursue relentlessly, fixate on the person as a case or pathology or build pathological levels of co-dependency, this can dramatically increase learned dependency in those with some personality traits, withdrawal in others. Self injury can escalate where this contributes to Dependant Personality Disorder where it is used to force the environment to take over, self injury due to extreme sense of helplessness where the environment constantly outshines the individual by taking over, or self injury where a solitary personality feels constantly pursued and finds self injury causes the environment to back off. All of these responses can be considered part of being ‘low functioning’.

Essentially, those in the low functioning group may be as intelligent as those in the high functioning group but are more likely to perform badly on the same IQ tests and may have great potential in fields far different to those people in the high functioning group may excel in but be socially more unlikely to get those opportunities or make the social contacts which would lead to those.

Who speaks for whom?

I had a letter from Adam Feinstein of Looking Up magazine who wrote:

Hi Donna,

I’ve just been asked by someone in France whether there is a fundamental difference between a non-verbal individual with autism who appears to be cut off from the world and a higher-functioning autistic person who is able to write articulately about his or her experiences. What is your view on this?

I felt the question was an interesting one so wrote:

Non-verbal could mean so many things.

It could mean infant depression with acute social anxiety and selective mutism.
It could mean brain starvation and toxicity due to gut/immune/metabolic disorders
it can mean dominated with mood, anxiety, compulsive disorders till everything is too chaotic to dare build bridges through communication.
It could mean lack of simultaneous processing of self and other together with oral dyspraxia.
It could mean someone meaning deaf, perhaps also meaning blind who has been unable yet to learn the one word-one meaning system.

If a high functioning person has never been any of these things, then they are psychologically, cognitively, perceptually very different to a high functioning person who has once been at least some of these things during a conscious phase of childhood (ie after the age of 5)

If a high functioning person outgrew such stages before the age of 5, they may have been unlikey to have had the neurological development to retain a comprehensive and cohesive memory about daily life, perception and functioning to later convey that stage in anything but glimpses.

On this basis, anyone diagnosed as psychotic or autistic under the age of 3, and who was functionally non-verbal and lacked simultaneous processing of self and other, but who outgrew such experiences by the age of 3-5 would likely not really understand what it is to take for granted what it’s like to live one’s daily life as a grown person this way.

For example, I came to understand the one word-one meaning system at age 9-11. Before this I was largely meaning deaf.
By age 30, I came to hold a simultaneous sense of self and other for 45 mins, long enough to become consciously aware of this process (I had had moments, minutes of it previously, but not enough to become consciously aware of it enough to grasp it as a system or something to seek). At age 9-11 one is relatively a grown person, at age 30 one is certainly a grown person
but at age 3 or 5 one is still developing fast so one lets go of the earlier phases. At age 9-11, whatever cognitive, perceptual and communicative stage one is in, this is more like just ‘what life is’, ‘what being a person is’.

I’m now someone who can speak fluently. But there’s much of me finds this a foreign system, foreign language, and its often tiring. I’m far more about being and doing. This is perhaps because I came to understand language quite late (had a massive stored repertoire of stored strings before this) or it could be the other way around, that I was late to develop functional speech because the semantic-pragmatic system was not my natural neurological strength.

Just because I can learn to do handstands doesn’t mean I was designed to walk on my hands.

So I don’t easily see my experiences reflected in those who outgrew these things by age 3 or 4, even though I may be in the same HFA group as them now. Being ‘feral’ until such a late age changed me in fundamental ways, neurologically I’m more rusty than earlier developers, my batteries go flat quicker, my natural instincts work in other ways, my soul is geared for a more animalistic style of processing and responding and it takes more to consciously try and dominate that in order to survive in the non-autistic world. At the same time, I’m in a distinctly different group of adults to those who are still in the developmental phase I left by late childhood and those who are still functionally non-verbal adults.

It may also be that many people with Asperger’s can’t grasp the world of meaning deafness, meaning blindness and a time when there was no concept of simultaneous self and other. Some people with HFA, however, can (generally those who developed communication late childhood-puberty) but most verbal HFA people I’ve met either began in the HFA range or outgrew all but their behaviours by age 4.

Autism, however, is not behaviours. One can become attached to behaviours long after their cause or necessity has passed.
And one can dump behaviours even when the causes persist. Educationally, families and professionals want to learn about the sensory-perceptual and cognitive challenges. Recounting one’s old behaviours as a toddler, without explaining their perceptual, cognitive or communicative roots, is entertainment not education and adds little to understanding in the field.

Autism has become trendy, like dolphins and unicorns, and I think we need to distinguish identity/culture politics from the condition as well as look at where the two meet. The cultural phenomenon is real and often useful to those who gain emotionally and socially from it. All families of those with autism need to see and respect the PERSON and not fixate on pathology until they erase the personhood and equality of the person with autism. At the same time, autism as culture is often not where families of severely challenged kids with autism are living day to day.

Yes, it IS a spectrum. Yes, there are different autism ‘fruit salads’. And we all have much to learn from each other. We learn that best when we talk as representatives of our own realities without presuming we speak for all with a shared label.

🙂 Donna Williams *)
http://www.donnawilliams.net

For more information please see The Jumbled Jigsaw by Donna Williams.