WHAT IS TO BE DONE? (Antonio Rotundo)

Ten suggestions for early intervention in bringing up children with developmental disorders.
For parents, educators and teachers of small children.

THESE SUGGESTIONS MAY NOT BE EASY TO ACCEPT OR IMPLEMENT: THEY REPRESENT A CHALLENGE WORTH FACING, IN LIGHT OF MY EXPERIENCE

When the first suspicions arise that a child’s development is not normal and there are no obvious signs of any other physical disabilities or mental retardation, it is essential to watch closely the child’s behavior without becoming prematurely or unnecessarily alarmed. Pediatricians do not always recognize or highlight the first symptoms of a developmental disorder; rather, they sometimes underestimate them, whether unconsciously or in order to reassure mothers. Symptoms usually begin to surface at one year of age, and increase with the passage of time, becoming more obvious around three years of age.

Only a child neuropsychiatrist or a psychologist, specialized in this kind of pathology, may establish whether a child presents abnormal behavior which may need investigating, as well as the nature and level of such behaviour.

I will succinctly detail some suggestions which I consider to be beneficial in the early management of a small child with communicative and relational disorders by her/his family or carers.

It seems evident from the above that only the intervention of a multidisciplinary team, specialized in the field, may adequately explain such a complex disorder, and offer personalised support to parents and teachers. Unfortunately, these often find themselves in a situation where they need to cope on their own, and feel quite inadequate and forlorn.

I hope the following suggestions may prove to be reasonably helpful.

The suggestions are simply the fruit of experience and do not purport to be exhaustive. They are merely an invitation to deeper reflections before intervening on the basis of limited understanding.

Observation: whenever possible, and there are no risks to the child’s safety, watch her/him. Take notes concerning the child’s spontaneous behavior, favorite games, gestures, and strategies used to meet challenges, or to obtain or refuse something. Observation is a prerequisite for a child’s upbringing. It is also very important for the carer to be observed while he/she plays with, or looks after, the child. We are often unaware of what we do, and a detached observer could provide helpful advice or suggestions. In this context, it may be really helpful for a carer to make use of a videocamera to provide further data for analysis.
Analysis: a careful analysis of the child’s behavior may better highlight the problems relating to empathy, interaction, exchanges, waiting periods, some sensorial problems. Of the essence is the observation of the child’s mannerisms, attempts and strategies, known as ‘Applied Behavioral Analysis’. In the case of a child with impaired development, analysing the child’s behavior is essential to avoid indiscriminate, hasty intervention. Using a normal, spontaneous social approach is the real stumbling block: it does not work!
Understanding: after careful analysis, we will have a clearer understanding of the child’s communicative style and personal way of acting and interacting. The better understood a child is, the less troubled he/she will be. Our effectiveness is directly related to the extent to which we understand the child’s problems. Unless the adult carer consciously operates in this way, the child will put too much effort into trying to communicate, thus making the carer’s work even more problematic. It is important to avoid a subjective, stand-alone ‘interpretation’, as opposed to understanding the child’s problems and remedies from facts, context and the materials used etc.
Discrimination: anyone, when facing difficulties, will implement strategies to overcome, bypass, or avoid them. In so doing, that person will often discover that some strategies work effectively and will therefore automatically be retained, whether or not they are socially acceptable. If they are not socially acceptable, we call them ‘tantrums’, or behavioral problems. In actual fact, a tantrum is a strategy which a child develops by trial and error, and which allows that child to obtain whatever s/he wants. Therefore, the child considers it to be effective! It is a top priority to learn how to distinguish between tantrums and bad habits on the one hand, and difficulties caused by a neurological or physiological disorder on the other, if we wish to avoid further worsening of a condition. Many disordered features in an autistic child are caused by the absence of treatment, or poor treatment. If we reflect on these harmful environmental features with a view to assessing and altering them, we may well achieve a more optimistic perspective on the problem.
Respect: once we have distinguished between innate problems and acquired bad habits, we must show the utmost respect for the former and absolute firmness and consistency towards the latter. Respect, in the absence of knowledge and research, is insufficient: however, it has a positive effect in helping carers to face up to diverse daily situations with greater awareness. Unless we have a positive and appropriate attitude, we may well end up expecting too much or quitting the fight. Both the management of biological difficulties and the management of bad habits require the knowledge of precise principles and educational strategies. There are no ready-made formulae.
Cajoling: one cannot force a child to do something the child does not understand, which is too difficult or does not arouse interest. That’s why it is important to use those objects which will hold the child’s attention, so as to induce him/her to come to us spontaneously, to sit down without prompting, to look without being forced to, and to act or behave in such a way as to recover the object, or toy, or a gratifyng or interesting gesture. It is only thus that a necessary complicity and basic trust will be created, which will bring about a productive and stimulating outcome: if we handle or do something quite interesting and child-friendly, the child will approach us and stay with us. Anything which is not hazardous may be used, provided it arouses the child’s interest. This may include strange and/or stereotyped games. It is up to us to be able to operate a strategy productively, so as to reach a pre-determined objective. We should never hassle the child, nor force her or him: if we wish to avoid this kind of temptation, it will be adviseable to shut and ‘clean out’ the room in order to reduce the amount of space available for any stimuli. This cannot be achieved at once, but only after much observation, analysis, understanding and patience, over a sufficiently extended period of time. I can assure my readers that patience, simplicity and firmness will yield excellent results. Yet we must begin to play the child’s game, in the respect of his or her rules.
Repetition: any small child, every time he/she develops a new interest, keeps rehearsing until he/she is able to master the new skill. We must be able to measure out wisely any interesting stimulus, to avoid saturation. Conscious observation allows us to discover many interesting stimuli for the child, and it is up to us to dole them out in the right doses at the opportune time. It is necessary to remember that a new skill cannot be acquired by performing the same action a couple of times, but every time it is necessary. This must not be confused with permission to let the child obsessively repeat the same game by her/himself!
Waiting: this is possibly the hardest thing of all. We need to be patient and refrain from jumping in too early, thus frustrating the child’s plans and causing a further ‘withdrawal’ instead of a gratifying stimulus. Alternatively, we may try to subject the child to our own routine, either to fit in with some unrealistic timetable, or to meet some unreasonable expectations. We all like feeling that we are in control, however everyone has their own schedules and we must respect them. It is better to take one step in the right direction than several steps all over the place. There is no way we can hurry up a small child: we may teach him or her to stop an activity, but even this requires precise strategies. All the more so in the case of a child with a developmental disorder, who for various reasons is unable to perform certain tasks. Therefore, it is important to plan daily activities carefully. How can we learn to determine when we can go ahead or wait? It depends on experience, sensitivity and careful, meditated observation. The worst temptation in this task is to believe that we are doing too little or that we are proceeding too slowly, or that we are repeating the same things again and again. If we pay attention, the child himself/herself will let us know, when we can proceed, when we should wait for a task to be completed, or when we should change materials, content and ways of gratifying ourselves. We must neither bore nor stimulate the child excessively, but must keep a balance between cognitive, motor and emotional stimuli. The real secret of success is to develop a synchrony of activity with the disturbed child.
Storing: this concept comprises many aspects of upbringing, but I am using it in a narrow sense, i.e. in reference to positive selective attention. With the help of this special attention/observation, we ‘store’ all instances of spontaneous behavior which we regard as positive for the child’s development, we save and protect it, we enhance it and channel it in the right direction for the purpose of cultivating it as we would cultivate a grain of wheat. At the same time, we learn how to ignore any instances of behavior which seem insignificant, however irritating they may appear. Evaluating the child’s reservoir of skills allows us to remain within those parameters, and avoid making excessive demands which would create unreasonable difficulties. If we learn how to ‘store’ any ounce of skill and how to preserve it and use it on a daily basis, this will give us a positive perspective on the child, likely to be successful. Over time, our ‘warehouse’ will be adequately equipped and will afford a quieter, more satisfying life to all.
Encouraging: finally, when the child cooperates with our suggestions for play or interaction, when it becomes easier to play with her or him, when we understand the child and the child understands us, the time has come for us to ‘encourage’ new skills which should take into account the child’s actual age and her or his developmental level. At this point it will be easier to detect the presence or absence of behavioral problems, provided we have done our homework properly. If our homework has been good, the problems will be minimal and easier to contain. This will enable specialists to plan new, more appropriate activities, and will enable family members to better look after the child. Let us bear in mind that each child, no matter how serious her or his disorder may be, bears within herself or himself a life force which directs her or him to get on, to spontaneously, sometimes urgently, seek well-being and a rate of success compatible with the skills he or she possesses. There is not one single child who will not do her or his best, no matter how difficult it may be, to achieve what he or she deems to be advantageous. Encouraging, and adequately and realistically supporting that life force, helping the child to overcome obstacles with a view to her or his ultimate wellbeing, represents a benchmark for all educators/parents.

The greatest difficulty in all of this lies in the fact that we take it for granted that children are brought up/educated by their parents, teachers and educators. In fact, children are born with a predisposition to learn how to become persons, despite everything, through all possible environmental situations. What adults do is rather marginal, sometimes even counterproductive, yet healthy children learn how to walk, talk, play and read, and we don’t realise that they achieve most of that by themselves!

This natural predisposition to learn, understand and share the most significant aspects of humanity will be partly or totally compromised in a child born with a generalised disorder.

A treatment, in order to be effective, needs to find and learn ‘symbolic prostheses’ which are necessary to build, facilitate and support a predisposition if this is defective. Believing that one can bring up a disturbed child while neglecting that need (i.e. the correct prosthesis for each individual) is a real obstacle to his or her upbringing. Children who could learn a lot, at most times don’t learn anything, or just learn antisocial behavioral patterns, sometimes undesirable ones, because we do not accept this significant premise.

This is a conscious challenge by human beings against an enemy, partially unknown, which strikes at the foundations of being human, i.e.

a natural predisposition to learn and share a common humanity

This is why it is so difficult, especially for a parent, to accept this kind of disorder and adopt appropriate behaviours and strategies. A parent who will modify the natural, spontaneous function of being a generic parent, in order to try to be a ‘special parent with a special child’ is the most promising premise towards achieving positive results.

The following sites contain reliable information on this type of disorder:

Further material can be found in the journal Autismo e disturbi dello sviluppo, published by Erickson

In particular, the following articles:

Laura Schreibman: Trattamenti comportamentali/psicoeducativi intensivi per l’autismo; N° 1- 2003
Gli articoli sulla comunicazione di L.K. Koegel, C. Lord, L. e M. Sigman, E. Micheli; N° 2-2003
E. Schopler: Trattamenti per l’autismo: dalla scienza alla pseudoscienza all’antiscienza; N° 3-2003
C. Xaiz: Intersoggettività, comunicazione, abilità sociali nei soggetti autistici dall’infanzia all’età adulta; N° 1.2004
E. Deanna e L. Destefanis: Una esperienza di logopedia con bambini autistici;
E. Micheli: Integrazione e educazione: due diritti in contrasto? N°2-2004

Milan, 5 October 2004

Antonio Rotundo