National Association of Parents of Autistic People
Once a diagnosis of GDD (Generalized Developmental Disorders, i.e. Autism, Asperger syndrome, etc.) has been issued, we need to address the question: what should the specialists and the parents do?
If the diagnosis has been issued by a recognized health centre, our advice would be not to seek further opinions, but to look for practical management of the condition. Responsibility for this would lie with the team that has made the diagnostic assessment.
If, however, there is some uncertainty about the diagnosis, it would be appropriate to seek advice from another health centre, preferably not within the private sector or abroad (all that is needed for reliable information is the advice of national parents’ associations, available on the Internet).
I’ve said it before, and I’ll say it again: the parents must be the first ones to be informed and trained, as they interact with the autistic child daily, round the clock. The crux of the problem is that specialists are not trained to inform and instruct the parents correctly. Why is this not done?
In the first few months of a child’s life, the parents are, and must be, the sole, natural ‘therapists’. The earlier parents are made aware of this responsibility and adequately trained, the better it is for a child who is looking for one thing only: i.e., to see things clearly, in her or his natural environment, in the communicative, relational, affective and emotional sphere.
The child’s environment and atmosphere must therefore be prepared, to enable her or him to feel welcome, understood and secure, just like any other child. This is will be harder, but not impossible, provided environmental structures are adjusted accordingly.
Since there are many factors, presumably familiar to specialists, which ‘upset’ the normal imprinting process, these must be taken into account, and it is important to observe and analyze whether what is being done is a step in the right direction or not.
Such an analysis is not very hard: if the child clearly understands, cooperates, enjoys interaction, is quiet (yet not passive), serene etc., then we can conclude that the right thing is being done.
If, on the other hand, the child shows irritation, frustration, refuses to cooperate and does not pay attention to what is being suggested, then what is being done is wrong, and the child’s confused state is getting worse.
I will be the first to admit that I do not possess all the required skills, which should be an incentive for advocating more general, ongoing training in this field.
We must become aware that what happens naturally during the upbringing of an ordinary child must be carefully scrutinized, assessed and programmed in regard to an autistic child. This task belongs to the parents, under the direction of specialists.
Therefore, a family that recognizes these difficulties and progressively comes to terms with them and with the child, should provide an essential background capable of giving the child something which, through no fault of it own, it has never experienced. I mean a human imprint. We can only try!
The care which is lavished on such an environment is lays the foundation for the acquisition of future skills.
In the magazine Famiglia cristiana a pediatrician, M.T. Rigazio writes, under the heading ‘A custom-designed child’s room’, The parents must view that room with the eyes of their newborn, and apply to it the appropriate measures of safety, comfort, health and welfare, in keeping with the child’s growth. The same must be done in regard to the Autism of the child.
If we ignore or undervalue such a critical component, we will be adding even greater difficulties: the fault here lies with those who neglected the child, especially the health service providers and the specialists who should have known but were not proactive in training the parents towards this critical juncture.
If parents are not given an unequivocal, responsible set of instructions, they will need to go doctor-shopping until they find one who will convince them that all they need is a diet, some medication or an alternative therapy, to resolve their child’s problems.
My experience tells me that the gravity of the problem lies here, and much less in the initial etiology.
When a house falls down, or a child with Autism ‘falls down’ under a burden heavier than its strength, at the age of perhaps eight to twelve months, our task should be first to clear the rubble away in so far as possible, and then rebuild, having carefully assessed the state of the land and the available resources.
Either we treat the child through this kind of vision, or we will soon cause even greater confusion in its mind, with resulting problem behavior.
The ‘experts’, knowing all this, should get to know and assess the child in the shortest possible time, and immediately advise the parents on how to create the most appropriate environment to deal with the child’s challenges. This is a complex task, and parents need to be supported, trained and patiently led, in accordance with their needs and skills. What happens instead is that they are more and more often left to their own devices and to a ‘do it yourself’ situation.
It is not possible to adopt any treatment or therapy in the absence of this essential precondition, which makes the parents the first indispensable and responsible players.
Once the experts are able to notice and assess an improvement in the child’s ‘confused state’, just as when the Sun comes out and the mist lifts, then we shall be able to consider the most appropriate forms of teaching and learning in the various areas of development.
A child who is confused and frustrated will learn nothing, or will learn to rebel; a serene, self-assured child is prepared to explore the environment around it under the guidance of a parent who will observe the child and, if necessary, provide adequate stimulus. This is a significant skill which must be taught to parents.
Everybody must fulfil their responsibilities.
First of all, pediatricians, who often concern themselves entirely with the biological and physical characteristics of a neonate, and neglect, or undervalue, the relational or communicative aspects;
child neuropsychiatrists and other experts in the field, who perhaps find it easier, more convenient and cheaper to ‘treat’ the child from the safety of their rooms;
finally the parents, who either accept and are convinced of the need for their active involvement throughout the day, or else let themselves be persuaded that others can ‘cure’, or at least train, their child.
The autistic child’s first, real ‘therapy room’ after the diagnosis is the home!
That’s where the specialists must go, at the earliest opportunity.
In conclusion, an excessively stimulating environment, overfilled with toys or people etc. is not appropriate for a child with Autism. Persistent interventionism, of an overfast, oververbal, even, according to some, overphysical nature is not appropriate. We become aware of this through the individual child’s responses and behavioral patterns, rather than laboratory tests.
For this reason, as soon as a mother notices that something is amiss in her rapport with the child and its development, the first port of call should be a pediatrician. But pediatricians either repeat the same refrain, ‘let things take care of themselves’, or even suggest that Mum should be less anxious!
There are now adequate tools for pediatricians to recognize the first alarm signals, and consequently to provide appropriate advice, as they do in the case of flu or dietary intolerance.
In this way, we may be able to avoid alarming the mother and at the same time observe the child’s behavior. I maintain that this is a pediatrician’s specific duty and responsibility. Why, then, is there still so much ignorance and superficiality?
Dear parents, you must insist on being adequately informed, because you are,
and should be, the best ‘therapists’ for your child.
Everybody else comes and goes, you will always be there!
What if we could give a parent six, or twelve, months of parental leave, so they could be thoroughly guided at home by a specialist, to provide the missing imprint?
I repeat: the most serious problem for an autistic child is not so much the initial damage, but the cruel joke leading to the child’s immersion in an environment which is unsuitable to provide a welcome!
I wonder if it could be possible some day to offer children with Autism an early professional intervention, intensive and appropriate from the day the diagnosis is made?
We all hope so, if we go in the right direction.
Antonio Rotundo, Educator
Albese con Cassano, 24 January 2010