National Association of Parents of Autistic People
The first signs of autistic disorientation become manifest from age 8-9/12 onwards. Before that time, the signs are not evident but have most likely been there since birth. The intervening time between an autistic child’s birth and a firm diagnosis is merely a trigger for frustration, delays and suffering: the damage in her/his relationship and communication with the world begins to make itself known from her/his entry into the world.
This is the first failure of a human imprint!
The same argument applies to the child’s parents: the emotional and cognitive disorientation caused by their perception of the difficulties relating to imprinting prevent parents from adequately adapting and connecting to the interactive communicative pathway suited to their baby’s unsuspected fragility.
Would the behavioral phenomena of Autism be different if we could ensure an appropriate reception for the initial disorder, in other words a suitable ‘field’ for it?
All of this goes to show the importance of research as prevention, designed to make it possible to welcome a baby, whose ‘autistic fragility’ has been detected from birth, in the most appropriate way. It goes without saying that there is ample scope for any research designed to overcome a disability or to achieve a complete recovery. However, as long as the precise causes of the condition and the chances of curing it remain unclear, we must care for any children who continue to be born every day.
A critical question, at the moment, will be how, and to what extent, it may be possible to make up for the shortcomings of a defective imprint, and the consequent lack of well-being for a baby and her/his family; to what extent it may be possible to re-create, at least in part, an environment essential for a welcome commensurate with the baby’s potential, to ensure her/his comfortable integration into society and a new start in life in a more acceptable context. In other words, we ought to allow a baby to be born a second time, in an environment more suited to her/his fragility, to avoid a situation in which ‘it never rains but it pours’.
In order to avoid lengthy disquisitions, I will try to describe such an environment in the most concrete possible terms. Briefly, special attention must be paid to a child in strife: we must devote more time to her/him, pay more and better attention to her/him, learn to notice what will annoy the child and refrain from it, humor her/him all along. In a nutshell, we must respect the child on her/his terms, and strive to make sure that the child feels that s/he is being understood: just as we would treat a newborn baby, the difference being that this is harder in the case of an autistic child, and much understanding and attention are required.
This is the time to give our best to consider and prepare such a welcome, as soon as a diagnosis of autistic spectrum disorder is issued.
A child with Autism, as soon as s/he is born and through no-one’s fault, let alone the child’s, enters an alien world where, unfortunately, no-one can become immediately aware of her/his deficits, and where life goes on normally for all other children except for the autistic child. Everything is too fast, too confusing, too annoying.
We can compare an autistic child to a small extraterrestrial “who got lost” and, to quote Jim Sinclair, has ended up in a different world without a life manual to enable her/him to get by, and what’s more, without any chance to explain this to those around her/him, to her/his parents to start with! Is it not a paradoxical situation, to find that those who have been so looking forward to your birth, anxiously and lovingly, could be the same ones who do not understand you? Sometimes, all of this will go on for several years.
My aim is to try to work out the importance of preparing the ‘soil’ to enable the child to feel appreciated, welcomed and brought up according to her/his potential and not according to our tastes. A child is like a vulnerable plant seed, and we must understand and protect that child. Let us help that child be reborn in a more welcoming environment.
Such a special environment, almost an incubator for Autism, is in my opinion a necessary precondition for the child’s chances to recover any missed opportunities for her/his development, in accordance with her/his potential and without any further frustrations. This is like saying ‘let us let bygones by bygones, and make a fresh start!’. None of this will be easy, yet I maintain that it would be the only way to prevent ‘integration at all costs’, in addition to respecting the child’s right to be accepted and acknowledged.
We must consider this issue seriously: what is the greater ‘harm’, the initial one or the harm caused by the inadequacies of the environment?
At this stage, I will simply stress the ongoing confusion regarding ‘treatments’ which, if we judge their outcomes (in relation to people with Autism in their teens and adulthood) seem to achieve unintended results, while no-one undertakes to reflect seriously on the need to prepare a welcoming environment for the child.
My dear parents, be aware of the need to make bold choices, which must be scientifically sound, but first of all should help your child feel welcome. The theory of imprinting is scientific too! How many are prepared to discuss it?
The general tendency is to listen to this or that advice, provided, at a high price, by gurus and charlatans, the outcome being that nothing worthwhile is done to re-create the special environment’ suited to the child and her/his family.
Various treatments (Teacch, ABA, DIR, Facilitated Communication) and fancy diets are >favored, with the respective advocates claiming that their particular chosen theory is the correct one.
Naturally, parents are free to choose, but I have a right to be equally free and responsible, and to make them aware of what I regard as more advisable and beneficial to the child on the grounds of experience and reliable international research. Then I must shoulder responsibility for my advice. How can we get out of this impasse?
It seems that everyone is practising ABA on the grounds that it works! The first ones to claim this are parents. When we verify how the method is presented and implemented, we find that it boils down to the usual Italian habit of coping as best as one can, at an exorbitant cost, without mentioning that it is not the real ABA but something vaguely similar. My view is that neither Teacch nor ABA is appropriate in Italy, where we do not enjoy the necessary cultural or institutional background. We are often unaware that such a method exists, or do not wish to implement it, and do not realize that without a method we are at sea.
Whilst ABA is regarded as the most effective strategy for the upbringing and education of children, it is unconscionable to use it exclusively, at a high price! This is an error, which few will acknowledge or admit.
If Loovas and Schopler could witness what is happening in Italy, they would be horrified, and exclaim: “This is not what we meant!”. It is not appropriate to import American culture lock stock and barrel, especially when we are dealing with specific educational techniques which perhaps only work in that part of the world. In both Physics and Education, it is the scientifically validated method that counts, whether we are in America or in China…
These are my opinions, although I do not claim to possess the whole truth. However, skepticism and experience persuade me to establish parallels, so we can ask ourselves whether we are proceeding in the right direction in human terms or not, whether we are being really beneficial to people with Autism or not, whether we are acknowledging their rights or not.
If we wish to raise a child’s need for openness and understanding vis-à-vis her/his carer, we must seek, in spite of difficulties, a better awareness in our daily interactions with the child, and not rely on an increase in the length of treatment. A child’s need for clarity begins at waking time and ends at bed time! We need to know and prepare thoroughly the ground, before deciding which seeds to plant. We must not confuse methods with various approaches and treatments! Our method is available to anyone who wishes to apply it conscientiously, and, fortunately, this has never been patented. It is the outcome of human research.
We can do the right thing only if we train parents and teachers responsibly, correctly and humanely, bearing in mind the need to welcome a baby without prejudice, and the need to help them feel equally responsible, like specialists, in her/his upbringing.
A specialist must be acquainted both with the method and with the child, in order to be able to train those who will look after her/him on a daily basis.
If some parents are quite unable to cope, in spite of their training, institutions must take over the task.
Present-day knowledge of Autism, which is universally shared (or so I hope), and well integrated into our educational model, could be effective in replicating, at least partly, a special environment capable of achieving a human imprint, provided that knowledge is wisely and patiently applied throughout the day.
The environment must be prepared at the earliest opportunity.
Overlooking this step on the grounds that an intervention must be immediate and intensive is like sowing seed on an untilled field, in the hope of reaping an early harvest. We cannot teach a baby anything, but can look after her/him to ensure her/his well-being and safety.
The ideal ground for a welcome will be found within the family unit and subsequently at school. I’ll say it again: we must first of all prepare the ground, then sow the seed, and not vice-versa. But even the ‘care’ given to a field must comply with a scientific outlook whereby love is an essential, but not a sufficient constituent.
I have known many parents who, when they were given a diagnosis, were told ‘Fortunately, we acted fast!’ and were then dismissed without any clues as to how to interact more appropriately with their child, or how to re-create an appropriate environment, not just on a structural, material level but also, and above all, on an emotional and communicative level. What is the point of an early diagnosis if we do not translate it into an opportunity for laying the ground, adequately and without delay?
In this way, parents ‘doctor-hop’ for months and months, thus wasting an opportunity to lay the most suitable ground for the baby’s upbringing. Would Autism, as we know it, be any different if a baby were given the opportunity to make up for the missing imprint at birth, or at any rate soon after diagnosis?
This is truly a major responsibility for Health professionals.
The preparation of a suitable environment is not impossible, on condition that no attempts are made to ‘intervene into’, or ‘treat’ in great haste one or the other part of a child, through this or that technique, while neglecting the whole child, her/his environment and her/his whole waking time.
After all the interventions, which a professional may, self-indulgently, regard as successful, the child ‘dies’, as each intervention is conducted independently of others, and also sometimes in contrast with others, while forgetting to look in the child’s eyes to see whether all waspointing to smiles, well-being and development, or, rather, hopelessness and regression.
If people with Autism, especially those who cannot speak, having reached their teens or adulthood, could today express their opinions, what would they say to us?
‘If they could experience what Autism is like, even for just few minutes, then they would know what to do to help us’, says Therese Joliffe, a high-functioning adult with Autism.
My hunch, however, is that autistic children are treated on the principle ‘one size fits all’, in T. Peeters’ analogy: some operators pull one way, others the other way, and the one who pulls the best and the fastest is supposed to win the competition!
All of such children’s behavioural problems are justified by recalling that they are autistic, and not just very angry!
‘Ask yourself what your convictions are’, says Jim Sinclair, who is also a high-functioning autistic subject.
Let us stop fighting against Autism, and let us try, rather, to welcome, understand and help people with Autism on their own terms, and for what they would like to be: anything but skivers; anything but troublemakers; anything but violent!
In conclusion, my view is that we can and must re-create, slowly and gradually, the most suitable environment for a child with Autism soon after the diagnosis, provided each of us undertakes their responsibilities without ‘passing the buck’: the neuropsychiatrists must issue a diagnosis and explain it with precision; the psychologists and other specialists must get to know each child and train, adequately and without delay, parents and teachers; these, finally, must familiarize themselves with what is generally known in the field.
There is an obligation on parents too, in their distress, to develop a new awareness and an earnest preparation in facing up to such an unusual crisis. Help must be provided to them, so that they may be supported in accordance with their personal skills and potential.
It is the family environment that must adapt, in relation to the imprinting deficit at birth. This is not always possible, but it will be in many cases. These will give us proof of success.
If we go on ‘treating’, even ‘bombarding’ the child almost exclusively, sometimes for years, in various therapy centers, we will be wasting our time, will be keeping that child in a confused state because of environmental changes, in other words will be seeking success for ourselves and not for the child. A child is not a container to be filled up, but a vulnerable flower which we must look after in toto, wisely and respectfully.
The success of our approach will be demonstrated by the child her/himself, in her/his daily environment, at home, at school, through assimilation and integration or, in the opposite case, through the well-known problematic behavior.
An effective testing program in this direction would be desirable, to find out if small babies who, soon after diagnosis, are welcomed, understood and respected, in a word ’treated’ as above, in a more ‘suitable’ soil, will enjoy, when they grow up, a new, more satisfactory quality of life, than if they had not been ‘treated’.
Let us not copycat badly what they do abroad!
There should be no financial strains, since the existing funds would be more than adequate if they were wisely employed. At the moment, we are more capable of squandering them than using them wisely.
Whoever believes in constructive dialog rather than professional narcissism or groundless ‘miracle cures’, must operate so as not to become complicit in a sterile state of affairs.
Does anyone remember Dr Micheli’s myth of ‘Sysiphus revisited’; his humanity which went hand in hand with a genuine professional commitment? There are no miraculous or technological solutions, no short cuts, but only hard team work to confront such a difficult issue with humanity and real commitment.
‘Correct insights’ and ‘correct pathways’ are intrinsic to a psycho-educational model.
‘Correct insights’ are the prerogative of people with Autism. From them, we must learn to listen to try and understand and alter our outlook and our pathways in an attempt to ensure, first of all, a better quality of life for them and their families.
A better quality of life, when it exists, is self-evident!
Antonio Rotundo, Educator
Albese con Cassano, 15 January 2010