What if there's no such thing as 'autistic'?

[Guest guest]

What if there's no such thing as 'autistic'?

(Based on the book; The Jumbled Jigsaw, by Donna )

As a consultant, I have worked with over 600 people with autism and the thing is that when people point out the autism, they refer to many things.

AGNOSIAS

One child will be tapping, rubbing, smelling, mouthing things, play with the part and lose the whole, show no processing of visual context, find people interchangeable, fail to read mood or body language and struggle with receptive language and that will be called 'the autism'. Yet what I'm viewing is a textbook array of visual and verbal agnosia.

The carer might tell me their child is severely autistic on the basis he/she only flaps or chews the PECS cards and has failed to respond to ABA, Option or TEACCH. But, come on guys, who the hell said that meaning-blind children learn best via pictures? And you wonder why he/she turns in on themselves autistically? Ever seen the autistic behaviours of deaf/blind children before fitting programmes are used for their specific disability?

And then the carer may have become socially isolated because their meaning deaf, meaning-blind agnosic child touches and chews everything in the local shops, so now the family is isolated, the child sheltered from the very hands on discovery learning necessary to any potential Helen Keller or her visual/auditory agnosic equivalent.

And then poor old Helen or Henry ends up convinced that the ever-capable Superparent is their helper, for surely they could never learn to function whilst so incapable. Where's RDI (Relationship Development Intervention) or Floortime when an agnosic needs it? Well, if the family is already financially burned out by ABA, the cheap package of RDI may be on a shelf marked 'one day', even if it was the most fitting programme. And such identification with its associated anxieties progressively seal the child's fate.

I knew a boy, 8 years old, no speech, no interest in anything visual. He'd been taught with PECS with no response, presumed severely autistic. Within an hour of gestural signing and the use of movement put to words together with real life objects, he was using words and actively interested in exploring the links between words and actions. For him, the objects meant nothing until they moved and because of the stereotype that 'all autistics think in pictures' (in fact 60-65% of non-autistic people think in pictures) this agnosic boy hadn't been offered anything that fitted for 8 years.

Do diet and supplements improve visual, verbal, proprioperceptive or pain agnosia? Only if the person ALSO has gut, immune or metabolic disorders - and not all agnosic kids diagnosed as autistic will.

Will medication help agnosia? Not unless an autistic child with agnosia also has severe mood, anxiety or compulsive disorders dramatically draining their information processing resources and many may not.

Will ABA help kids with agnosia? Well, given that it usually relies on visual-verbal behavioural patterning, it could help agnosic kids do some prompt-dependent party tricks but it would be this agnosic group who would fail then to transfer these 'lessons' to other contexts where a more hands-on discovery learning process based on kinesthetic or musical learning (ie music therapy, RDI, Floortime) might be more fitting.

Would Options help agnosic kids? Well, if you can't grasp visual-verbal meaning and make your own autistic entertainment, it might help break down alienation and isolation in an otherwise meaningless world to see others behave like agnosics. But would the 'breakthroughs' be based on the theories of Son Rise? I don't think so, and if that's so, perhaps one shouldn't have to pay thousands for the 'specialised training' to get enough of a gist to implement similar without the rhetoric.

Would tinted lenses help? Auditory training? Well, most people with visual agnosia may benefit from having visual input reduced to increase processing time of what's left. That's what tinted lenses do. But most with verbal agnosia don't have uneven hearing. There's nothing to level out. Music therapy, however has been found to help people develop aural intelligence which may help people compensate for both visual and verbal agnosias. I see with my hands (kinesthetically) but also see musically (a Synesthesia thing). I hear musically (hear voices as sound/rhythm patterns) and also hear visually (via gestural signing and representational objects).

For more info: http://en.wikipedia.org/wiki/Agnosia SELECTIVE MUTISM AND LEARNED DEPENDENCY

Or there's the Selectively Mute kids, the ones who sometimes have parents who have depression, alcoholism and suicide in the family, if not agoraphobia and OCD. And the child gets anxious and nervous of new experiences so superparent protects them, calms them, calms them out of all the tantrums and tough love that would otherwise get them from infancy to childhood. And they learn that tantrums are part of the parents role as saviour, not part of a growing phase in tolerance of change, discomfort, waiting, turn taking, necessary to get a grip throughout childhood, teens and an independent adulthood one day.

But the depressed infant stops speaking, stops self-help skills and develops an exaggerated sense of its own helplessness and with that Separation Anxiety. And the parent or siblings take over, calming, placating, reinforcing the specialness or the child's incapability, even taking the child home from day care, from school, from the playground.

Two years on, the child has ensured others are its hands, its voice, its mind, and many an adult has lulled themselves into such a safe space too, never to come out. It's called an emotional breakdown and it doesn't turn around without the environment learning about its part in reinforcing it and how to send one message, not mixed messages, how to set boundaries and to be tough with those for whom comfort is so addictive they will develop dependency to ensure it. It's called Dependent personality disorder, perhaps together with Avoidant personality disorder, and associated Selective Mutism, and whilst its not diagnosed until adulthood, how many infants have it under the label 'autistic'?

How would our treatment of this type of autism differ if we could get past the label 'autistic' to what's underneath?

I knew of a girl, aged 6, who'd slipped into depression, acute social anxiety, lost speech, gave up skills and was diagnosed autistic. After treatment for depression, and a tough love programme using an indirectly confrontational approach, she began speaking again and is now integrated into a mainstream school. Was this similar to Lawson, who was able to speak by the age of 4 but had previously been a shy child who'd allowed her older sister to do the talking for her?

Would diet help those with Selective Mutism and learned dependency? Only if their dietary issues contributed to their mood/anxiety state and this may be so with some, and not with others. Would supplements help? Well, some supplements help manage stress and anxiety, like Mega B Complex, Calcium-Magnesium, Omega 3s and Glutamine, but supplements will only help where someone is deficient because of gut, immune or metabolic disorders. Sunshine, exercise, music, art, animal therapy and laughter therapy have all helped with depression and anxiety disorders.

Would brain gym and cranio-sacral therapy work for this group? Do they need tinted lenses? Unless dyspraxia adds to the developmental burden of an autistic person with Selective Mutism and learned dependency, there's no clear reason why brain gym would make much of a change. Cranio-Sacral therapy may work for those where depression and anxiety are linked to lack of sleep, brain toxicity or may work by default simply as a comforting social device in connecting with and trusting the therapists physical work with a body they themselves have become distant from or disowned.

Similarly, massage and reflexology is said to work with depression and anxiety. As for tinted lenses, interestingly, Seasonal Affective Disorder (SAD) does contribute to depression and anxiety for some people with autism and is managed by some types of tinted lenses (see Brain Power International or Irlen) but not all cases will be underpinned by SAD.

Would ABA work with Selective Mutism, avoidant personality and learned dependency? A compliance-based programme doesn't wait for motivation. ABA has clear boundaries, clear expectations, strives to counter learned dependency - though it may promote prompt-dependency.

Approaches like RDI, Floortime and Option may work equally as well to get depressed, anxious kids involved and other home made variations may sometimes work equally well.

For more info:http://en.wikipedia.org/wiki/Selective_mutismhttp://en.wikipedia.org/wiki/Dependant_personality_disorderhttp://en.wikipedia.org/wiki/Avoidant_personality_disorderhttp://en.wikipedia.org/wiki/Seasonal_affective_disorderGUT, IMMUNE, METABOLIC DISORDERS

There are the physically ill kids, pale, circles under their eyes, easily bruised, bowel problems, sick all the time or immune system too inactive to fight anything but they carry it to everyone in the house.

And they are lost, like starving children, often with distended bloated bellies and prone to recurrent infections, asthma, eczema, hives, sinusitis. Allergies may run in their family and their diet is often extremely imbalanced - they eat the fluoride (fluoride is sold commercially as rat poison and is not to be eaten) toothpaste which corrodes their gut lining and dramatically increases Salicylate toxicity and contributes to heavy metal accumulation.

There's often a family history of IBS, Coeliac disease, Colitis, Crohn's. But sometimes, the lunchbox is packed with simple carbs - white bread (registers to the body as sugar), biscuits (gluten is one of the hardest foods to digest, one of the most highly allergenic and lowers gut immunity), sugary cow's milk yogurts (most people with gut problems can't digest cow's milk and cow's have 4 stomachs with which to do so!), packets of potato crisps with half a dozen E numbers and MSG, Vegimite or honey (both 18 times the high level of the plant toxin Salicylate which around 60% of autistic kids can't metabolise, though harmless to others) and orange juice or Ribena (sky high in Salicylates, ok if you can metabolise it, toxic if you can't).

Fine for those with an iron gut and no metabolic or immune disorders - but what if you have autism and you're not one of them? Could these things affect general health, blood sugar balance, blood oxygen levels, oxidative stress, trigger inflamatory states, neurological reactions or set up systemic Candida effecting cognitive function?

These kids are the naturopath's customers but most will never get there because the GP will almost always tell the family that Autism is a brain thing and diet, supplements etc is 'unproven'. Complain about the health issues the the parents are told 'all kids get sick, all kids have bowel problems some time' or the one that goes 'yeah, that's just part of the autism'. More common than you think!

So, sure, according to studies by Gupta (University of California), there are around 20% of kids with autism with primary immune deficiencies. According to studies by Waring (Birmingham University), around 60% have Salicylate intolerance and according to Shattock (Sunderland University) around 80% can't digest Casein (cow's milk) and Gluten (wheat, barley, rye, oats) - so its NOT all of them.

And whilst nutritional support may make sense, including the sensible and monitored use of minerals, this is no reason to chelate a child to death or necessarily rally against MMR.

But it might be worth acknowledging that not all kids are the same. Some inherit physiological, immunological, intestinal, metabolic anomalies or weaknesses. And some have just been eating highly imbalanced diets on a chronic level with poor nutrient levels to offset the damage and a gut full of toothpaste for the past few years (kids are hospitalised each year for eating fluoride toothpaste and a few die. its not recommended for children under 2 but I have around 6 parents per lecture audience raise their hand tp say that their child regularly eats this stuff... how autistic would the child be a year after not eating a substance sold commercially as rat poison?).

But when it is just 'the autism', the question of poisoning is discarded. the fact is that, if the kid looks sick, is sickly and behaves like they are drugged, addicted or brain starved, then the word 'autism' may be a distraction at best, an obstacle at worst.

Do physically ill children need psychiatric medication? Only if their inflamed blood-brain barrierhas lead to imbalance brain chemistry underpinning mood, anxiety, compulsive disorders or attention deficits or if these are inherited co-morbid conditions. Would they benefit from auditory training or tinted lenses, from Cranio-Sacral Therapy, Brain Gym or massage? Well, tinted lenses could decrease the level of visual information their starved brains have to process. Auditory training would decrease stress if they ALSO had Tinitus, commonly associated with B vitamin deficiencies.

Cranio may help their brains detox and increase nutrition to the brain. Brain Gym may help if being brain starved has also contributed to delayed neurological integration (and dyspraxia). Massage is good for the immune system and to detox provided it doesn't involve oils high in things they're intolerant to (ie Almond massage oil base, and tea tree and lavender essential oils - among others - are all very high in Salicylates which can be toxic to Salicylate intolerant children)

Would ABA, RDI, Floortime or Son Rise help ill children with autism? ABA involves a compliance-based programme which can lead to extreme heightened stress in some children. Chronically heightened stress contributes to immune suppression and impaired gut function. RDI, Floortime and Son-Rise may be less stress inducing for some personalities and children who are struggling with health issues may benefit more from a program they experience as enjoyable, respectful, empathic and flexible.

For more info:http://en.wikipedia.org/wiki/Primary_immunodeficiency http://en.wikipedia.org/wiki/Metabolic_disorders http://en.wikipedia.org/wiki/Leaky_gut DYSPRAXIA AND DYSTONIA

And then there are dyspraxic kids. These are the ones with 'clumsy child syndrome', who struggle to ride the bike, get left and right mixed up, fail to co-ordinate. They may have oral dyspraxia as well, meaning they haven't managed to pronounce words clearly yet. Their dyspraxia may mean they struggle to find the muscles for toiletting or holding on so continence is a struggle.

They may be in a similar position to many with Cerebral Palsy and they need physio, speech therapy, OT, and often access to a communication device that relies on typing so they aren't left to suffer without speech WHILST the speech therapist helps them get what speech they can.

When Temple Grandin was assessed as brain-damaged at thr age of 2, because she could only say 'bah' not 'ball', she got speech therapy and by the age of 3 and a half, she was able to speak. She was describing oral dyspraxia. If she also had tantrums and smeared faeces at age 2-3, so did many toddlers, and a toddler with oral dyspraxia would be even more frustrated than most, especially one with a gleaming intelligence trapped in a mouth which couldn't pronounce words clearly.

That Temple has become a high -chieving adult diagnosed with Asperger's syndrome shouldn't be any more surprising than if someone with a short leg gets therapeutic shoes and becomes a runner. That she's a visual thinker puts her among the 60-65% of the general population who, in studies, have also claimed to be predominatnly visual thinkers.

There are, however, other dyspraxic children so severely affected by their dyspraxia that, even after OT, physio, speech therapy, cranio-sacral therapy, chiropracy, they may not make the same progress as Temple and they may require as much ongoing physical help as someone with CP and if, in their entrapment, they withdraw or stim, then we tend to label them autistic.

Dyspraxia, essentially a problem with neurological integration, comes in different degrees. Dyspraxia may also occur with Dystonia, essentially floppy doll syndrome, making it a struggle to maintain endurance, stay sitting up, write well, speak clearly, swallow or have normal bowel movements. Whilst dystonia is part of nervous system damage associated with poor body feedback, it has no necessary relationship to intelligence.

If those with it flap their floppy hands, shake their heads like a milkshake maker, jump, flop or spin to try and experience body feedback, we tend to call this autistic. If their dystonia is so severe that they haven't got the muscle tone to do these things and just play a computer game with two fingers or watch videos all day, we often say they are severely autistic.

Let's call them what they are: people with dystonia who need a physio, an OT, horse riding, swimming, dance, gym, brain gym, craniosacral therapy....

Dyspraxia may involve sensory-perceptual problems aided by tinted lenses. Brain gym, OT, Physio, Speech Therapy, Sensory Integration, facilitated communication training, horse riding, swimming, trampolining, are all approaches which fit into different aspects and degrees of dyspraxia and oral dyspraxia as well as dysgraphia (poor handwriting skills associated with dyspraxia).

Diet and supplements will aide those with dyspraxia only where their dyspraxia is heightened by gut, immune or metabolic disorders - and whilst a percentage will have these, others will not.

Medication has no relationship to dyspraxia except where a person with dyspraxia also has comorbid mood, anxiety and compulsive disorders or attention deficits which are not traceable back to an ill fitting approach or environment.

Those with dyspraxia may fit into any type of learning program which best suits their particular personality and adapts to their neurological integration issues.

For more info:http://en.wikipedia.org/wiki/Dyspraxia http://en.wikipedia.org/wiki/Dystonia

CO-MORBID DISORDERS

And there's the ones with Attention Deficits, rapid cycling bipolar, OCD, Tourette's and social anxiety/social phobia disorders and what I call Exposure Anxiety, who essentially seem 'nuts'.

These kids who were once labelled psychotic or disturbed are now being diagnosed as autistic. I know this because I see them. I see them before they go on omega 3s and off high salicylate diets full or E numbers, before they go on less toxic diets and stop eating the fluoride. I see them before they learn to drink water instead of Coke and before they know one week without refined sugars. I see them before medication and when they are on ill-fitting medication and sometimes when they are dangerously over-medicated, often on medication which didn't fit them or whilst simultaneously on a diet that sends them nuts or in an environment that is overwhelming them or has long since been able to cope with them or seen the person not just the condition.

These are the thrusting, grimacing, clucking, humming, clapping, checking, repeating, jumping, squealing, avoiding, full on 3-10 year olds who are managing a plethora of psychiatric challenges. Unmedicated adults would often kill themselves in the same position. Their families often have a parent, grandparent, aunt, uncle whose had one or some of these things on one side of the family, the rest on the other. These are the ones who got the double six on that dice throw and often have a sibling who got a six and a three or a pair of fives instead, so to speak. And they'll be just as 'nuts' and unstable at age 12 and 22 and 42 if their imbalanced brain chemistry is not addressed.

But because their stuff started at age 2-3, they got labelled autistic, even though their cousin who had a later onset at age 14 or 25 will be diagnosed only with one piece or the other. When a child gets a plethora of co-morbid psychiatric challenges, this mixture becomes one big grey indistinguishable sludge. If the overwhelmed child withdraws, self calms compulsively, socially restricts as a form of emotional self management, stims or runs in circles to stave off the chaos, then the child is deemed autistic.

How helpful is this? Will an autistic person with co-morbid mood, anxiety, compulsive disorders or attention deficits benefit from diet or supplements? If their imbalanced brain chemistry stems from gut, immune, metabolic disorders, then, yes, probably. Is this the case with all? No, I don't think so. We are all built differently and some of us are born with inherited neurological differences which may contribute to these things at an earlier or later onset in difference combination.

Will tinted lenses, brain gym, cranio-sacral therapy or facilitated communication training help?

Tints may reduce incoming information leading to less information overload and reducing 'triggers'. Brain gym may help if co-morbid disorders are worsened by information overload due to poor neurological integration. Cranio may help if co-morbid issues are associated with impaired flow of cerebral spinal fluid to the brain. FC may help if someone is too crippled by severe co-morbid disorders to be able to manage interactive verbal communication as typed communication takes less processing and a different style of information retrieval and interaction.

Will ABA, RDI, Floortime or Option help those with co-morbid disorders? Trying to teach a dog with fleas to do tricks will always be harder than teaching the same dog without fleas.

People dealing with co-morbid disorders will always cope better, learn better, develop better when these are reduced, managed and when they're in a respectful, interesting but non-overstimulating, non-overloading environment. Whether this is a home-made one or a bought package, its the degree of fit that counts.

But no behaviour programme will eradicate co-morbid disorders and, in some cases, behaviour programmes have increased chronic stress, fixated on the co-morbid disorders as 'behavioural', or so failed to see the personhood of the child with them that they they become even more alienated than the co-morbid disorders make them. What's more, personality and learning-style differences which are not accommodated or understood can lead to chronic anxiety and depression, which is not the same as having co-morbid disorders due to gut/immune/metabolic disorders or inherited tendencies toward imbalanced brain chemistry. This means that those in one group may require medication where those in the second may require only sensitivity to their needs and adaptation.

For more info:http://en.wikipedia.org/wiki/Anxiety_disorder http://en.wikipedia.org/wiki/Tourette_syndrome http://en.wikipedia.org/wiki/Obsessive-compulsive_disorder http://en.wikipedia.org/wiki/Bipolar_disorder#Rapid_cycling http://en.wikipedia.org/wiki/Clinical_depression http://en.wikipedia.org/wiki/Intermittent_explosive_disorder http://en.wikipedia.org/wiki/Addiction http://en.wikipedia.org/wiki/Attention-deficit_hyperactivity_disorder

AUTISTIC PERSONALITIES?

Then there' are 'autistic' personalities. Idiosyncratics who have a strong world of their own, are natural non-conformists and fail to notice social normalities are touted as autistics. Artists obsessed with creating compulsively in their solitary worlds are proclaimed as autistics. Conscientious workaholics in a technology age who sit all night thriving on achievements with computer code are championed as autistics. Sensitive wallflowers needing routine and assurance are proclaimed as sensitive autistics. Solitary people who feel safe with formality and solitude, can't bare fuss and struggle with intimacy are lauded as autistics. Leisurely couch potatoes who distress at compulsory activity are now called autistics. Devoted types who fear independent action are now called autistics. vigilant types who live for autonomy and struggle to trust are called autistics.

And those with all these traits of the 16 identified personality traits will be seen as 'quite' autistic, perhaps so much so that they would never want 'cure' for their selfhood - why should they? - and perhaps shared personality trait collectives more or less may form a subculture. And if we see infants and children with these natural styles, and we call that autistic, no wonder we are heading to 1 in 50.Different personality traits will work best with different programmes. Some personality traits require routine and overt encouragement. Others require solitary learning, hands on discovery learning or the right to observe before joining in. Some will respond best to indirectly confrontational approaches and be more susceptible to Exposure Anxiety.

Some will respond best to individualised and play-based programmrs, others to programmes where a clear sense of achievement is possible, and others to programmes where the focus is on the object/issue and off the person. Some will need programmes which rely on natural motivations and others will cope fine in compliance-based programmes. Some will require teachers and carers with clear strong boundaries who will neverpromote learned dependency and not reward narcissistic tendencies or excuse them as 'the autism', others will require a range of carers and teachers so as not to become over entangled to pathological and self-defeating extremes with any one of them.Treat someone's personality traits as their pathology and you'll create confusion, chronic stress, anxiety and depression. However, this doesn't mean that personality disorders need to be promoted or indulged to the detriment of the individual, the collapse of the family, the elimination of someone's ability to gain from education, interaction or employment, or to the endangerment of others.

Personality disorders are merely where a personality trait has become chronically indulged and exacerbated to pathological proportions. Those with a tendency toward addiction may be more susceptible to this than most, indulging their own chemistry patterns. But personality disorders also develop in interaction with the environment and where the individual is functioning in a state of chronic stress over a long period of time.

Whilst personality disorders aren't diagnosed until adulthood, they may have their foundations in childhood and infancy. A number of adults with ASD had previous diagnoses of Avoidant Personality Disorder, Schizoid Personality Disorder or Schizotypal Personality Disorder. I've encountered others previously diagnosed with Borderline Personality Disorder and Passive-Aggressive Personality Disorder and most recently Narcisistic Personality Disorder has begun to be diagnosed in children previously diagnosed with ASD.

For more info:http://www.ptypes.com/type_passions.html

CONCLUSION

And, of course, there will be those whose 'autism fruit salad' contains small, medium or large chunks of these different fruits in a variety of combos. That was my 'case' and what made me become an autism consultant. Then, there are those who could say this makes me a less 'pure' case of autism than most diagnosed autistic. But I would ask, which version of 'pure' do you mean? For every one of these examples has appeared 'really autistic' to diagnosticians.

What if the word 'autistic' is actually something 'made up' and being 'made up' as we go along ? This was already the case with the term 'psychotic infant' and 'emotionally disturbed'. Eventually, these terms got so full of people as to become useless.

Just because Leo Kanner and Hans Asperger 'discovered' some syndromes back in the 1940s didn't mean it ended with them giving these a WORD. They didn't know what they were seeing. It was a mystery to them. And today, we have unravelled many of the mysteries but are so blocked by our own politics, status trips, financial gains, social collectives, self-justifying stereotypes, funding traps, autism circuses and professional back-patting that we are choosing to remain ignorant in spite of a wealth of knowledge.

The numbers of autistic children climb and climb. Those on the talk circuit all claim to speak with one voice as 'autistics'. The DSM is used like a shopping list as people self diagnose and autism becomes a trendy subculture in a PC world. Expensive one-size-fits-all programmrs tout their products as science and reinforce the myth of autism as 'one thing'. Infomercials pose as conferences for the benefit of the few and perpetuate stereotypes or create new ones.

Hatred flies about at those who reduce or overcome their autism as 'never true autistics' and more hatred comes back at those who feel the only true autistics are the incurable ones or that there should be no treatment at all.

Somewhere in here, I have copped my share of the flung dung, been owned and discarded, listened to and scoffed at, but I sit firmly on the fence watching them all, chanting, 'what if there's no such thing as autistic'. What if 'autistic' is just a word for a collective of natural traits and conditions? In this sense, perhaps the word 'autism' is relatively useless, or at least far less useful than discussion of its component parts.

Donna , BA Hons, Dip Ed Author, Australia. Bestselling autistic author with 9 published books in the field of autism, international public speaker, autism consultant (and artist, composer, screenwriter)

http://www.donnawilliams.net/front.0.html