Autism is a reversed sun: its rays are directed towards the interior. The external surface is smooth, without feeling or interest, but the interior is of an astonishing splendor (Christian Bobin - The Light of the World (La lumière du monde), p. 19.)

The "Repit de Gaby" is a specialized service that makes it possible for parents to entrust their autistic children to caregivers for a day or for the weekend. It also provides a day camp during the summer holidays. Since summer 2004 an additional service, the "respites' stay", was added at a rate of three weekends per month. We also offer a camp for Asperger autistic teenagers, 2 Saturdays per month. In 2007 a house was bought using the private donation in order to regroup all of the staffs and to welcome all of the weekend "respite stays".

Anne and Benoit are the parents of 4 children, one of whom, benjamine Gabrielle, is autistic. Here a short speech pronounced by Anne Deschamps in 1999 in front a group of parents and volunteers:

Initially, I would like to speak to you about autism by colouring it with small anecdotes, and then the ultimate goal of my presentation, dicussing the need to give families with autistic children the chance to take a little rest from their daily lives. At about this time last year this was a project and a dream, with great happiness the "Repit de Gaby" is now a reality.

AUTISM

Unlike many other syndromes or diseases, autism is not detected quickly. You realize instantly that a blind man cannot establish a visual contact. From physical and facial appearance, we recognize Down's syndrome. Uta Frith, the author of "Autism: Explaining the Enigma", wrote: "... All those who live with children suffering from serious disorders of the development know that such children have the handicapped look. But generally the young autistic child strikes by his obsessing and somewhat strange beauty. We have a hard time to believe that behind this child's face hides a subtle but devastating defect, as cruel for the child as for his family..."

Autism is an abnormal or straightforwardly defective development of social interaction and communication. The deterioration of these interactions is severe and durable; it is possible that a certain individual's condition improves over time. As proof, my small daughter, at the age of five, put her small delicate arms around my neck. It was the first time that she expressed any affection towards me.

MY DAUGHTER GABRIELLE

Like some other deficiencies, we had to learn everything through Gabrielle, and obviously it is not finished. The difference it is that for most children certain lessons are taught without even feeling that any energy has been exerted, such as learning how to hold a bottle, learining how to crawl on four legs, and learning how to roll over.

To someone who doesn't know any better, an autistic child often seems spoiled or badly educated. Their reactions are often difficult to predict. My big girl Gabrielle, who is now 9 years old, will often tear off my glasses, pull my hair, and shouts, when in my arms. What does this image induce? At first even I saw the behaviour of a spoiled child, and I must still make an effort to remove this thought from my mind. She is not a spoiled child, she is only a different child.

If we trust statistics, in Repentigny alone there would be between 26 and 65 people with autism, for a population of 80,000,. However, even my daughter does not have diagnosis of autism! We are not enough to demand services, which will lead to the exhaustion of the families. Those challenged individuals who do not fit into a very strict standard of diagnosis are left to fend almost entirely for themselves, but we do not know how to face it properly. We therefore rely on the family to take care of the child's needs and to find the solutions to the difficulties that arise, even if that means turning to grandparents, uncles, aunts, etc.

What will happen when the parents do not have the necessary energy or means to care for these eternal children?

Gabrielle was a calm child - too calm. For a fourth child, it is a blessing - in the bible, Gabrielle is in a social group above the angels, she is an archangel... Quiet to the point that she didn't react to the sound of my voice. After checking her hearing, we can only be sure that she hears well in at least one ear. She does not look at me; only after testing were we sure that she could perceive people and objects.

When you want to communicate with somebody, you try to establish a visual contact, and then you try to analyze his or her facial expressions. Sometimes we read indifference, incomprehension, or just warmth. With an autistic person, it is looking into a vacuum. When finally you manage to collect a glance, you see eyes looking through you without looking at you, as if you did not exist.

To teach is particularly difficult and long: the concept of square, triangle, circle will be quickly assimilated, but when a question like 'where is the triangle?' is posed, you will get no answer... The autistic knows where the triangle is, but cannot say it, as he or she cannot communicate - it is a deficit of the communication.

Some of you surely saw the film "Rain Man" with Dustin Hoffman. It is a very beautiful image of autism, but you should not however lose sight of the fact that it is about a severely autistic individual, representing only a minority of those affected.

Until the age of 7, we managed to deal rather well. Between my parents and a good babysitter to whom Gabrielle went one or two days per week during the summer, we managed without too much difficulty. Now Gabrielle has progressed quite a bit, and we are very happy for it, but this also means she needs more supervision and monitoring.

THE FIRST CAMP

First of all I registered her in a summer camp for intellectually handicapped children. I had many hopes and aspirations, because they seemed to be very open to autistic individuals. However, after 2 weeks the manager told me they could not keep her. This fact was reciprocated, as I had quickly realized that I only borrowed time: the four or five hours that she spent there, I ended up paying in double in the evening. I ignored this, thinking that she only needed some time to readjust.

This camp was extraordinary, but it met a need that was different from my own. In fact, I have found that there are very few resources to answer to the needs of autistic children.

Following this experiment, I said to myself that it was absolutely necessary to find a solution. At this point the "Maison Clementine" in Joliette offered a two-week day camp for autistic children, with a ratio of one caregiver per child. After some research, I found that this is indeed the standard for this clientele. This is one reason that it so few services exist - the cost of running them quickly becomes too much to handle.

ANOTHER SOLUTION

A solution started to take form and to germinate in my head. My daughter is neither aggressive nor affectionate, but she demands quite a lot of supervision. If she is not in an adequate environment, she becomes hyperactive. Not a neurological hyperactivity, but an emotional hyperactivity - a reaction to something disturbs her.

The autistic have behaviours which we all carry in ourselves, but they have them on such high degrees that it interferes with their development. For example, when we arrive in a place filled with people whom we do not know, you instinctively seek a known face. Failing this, with fleeting glances you seek a face that looks for reassurance as yours does. The autistic, however, may instead start to run, shout, or react in other ways which is not "socially correct".

What are necessary is a very structured environment and a one-to-one relationship between child and caregiver. This results in a very high cost for each child's participation in a given activity, but this cost greatly outweighs the benfits of giving the family a chance to take a little breather. It is just this that we did with the "Gabychou" camp. Far from most conveniences, we accommodated 5 children, with 4 qualified caregivers, including pediatricians and specialized teachers.

The exhaustion experienced in families of autistic children is the same level as that seen in families of other handicapped children. The difference is at the level of knowledge and the recognition of these problems. Some of you may remember the story of a mother who drowned her autistic son only two years ago. Since that day, more attention has been given to the autistic and to their families, but as of yet, there remain no proper diagnosis and treatment programs for these children. Never will they enjoy the same autonomy that you and I have.

BEGINNING TO HELP

The reason for which I take the torch today is that I quickly understood that I could not wait for someone to draw up a planned program for these children. I always speak about children because my daughter is still very young, but I also believe that others who are afflicted with autism are in many respects 'eternal' children. It would be excellent to go to knock on the doors of the various governmental officials to ask for what I want. However, it was first necessary to find a solution, to study its feasibility, and to test its application, and this is what we have done during the last year.

Finding the right tools is not all though. It remains necessary to attract people to use the service, just a it would be for a commercial enterprise. The families of autistic people live somewhat introverted lives, mirroring that of the child, due to the social unacceptability of the child's behaviour. It is thus necessary not only to charm the child, it is also necessary that the parents see the service as a solution and adhere to it.

My ultimate goal is to keep the children with their natural families. The point here is not to blame or point fingers. God did not create or equip all humans equally. In the same way that the children did not arrive in the world with equal chances, not every parent has the same physical and psychological capacities to keep a handicapped person within their walls.

In all of Lanaudière, the "Autism society" hardly counts sixty members. It is difficult to know the exact reason of this low membership, but what seems most plausible is the dissimilarity from one autistic to another. What is even more astonishing is that when we start to speak about it, people tell us that they have a close relation, a neighbor, or a co-worker who has an autistic child. As the symptoms and severity of autism range greatly, they are sent into day care centers, sometimes with child psychiatric treatment or in intellectual deficiency centers. The more we talk about it, the more people will adhere in greater numbers to our association, and from there, we will be better capable to meet their needs.

The current governmental formula of respite is in the form of financial assistance, but it is not the solution. We need a proper system, adapted and evolving on a regular basis. When I am at the end of my rope, do I have the capacity to devote time and energy to arrange everything for my children so I can take a break? The answer is often 'no'.

OBJECTIVES

My opinion is that the respite for the families is as essential to them as our health care system is to everyone of us. It makes it possible for parents to participate in actitivities that they are normally unable to participate in, be it as a couple or with any other children they might have. It allows other family members, such as brothers and sisters, to breath a little and take some time off from their demanding schedules.

Did you know that the rate of separation of the parents of these children is much higher than the average for the parents of children with other handicaps? It is not difficult to imagine why - when time and energy are invested to great amounts into the child, not much is left for the parents' relationship.

When the children are small, the parents' workload is the same as all parents of the earth. The additional energy required for a handicapped child (I do not speak here about a sick child, but a child with any deficiency) sometimes goes unnoticed, even by the parents. It is as the child grows that energy starts to disappear.

When the child hits adolescence, many parents are faced with a difficult decision: to keep the child whom they love and cherish, no matter the energy involved, or to opt to put him or her under the care of someone else. This is a little like asking you whether you would prefer to have cancer of the liver or of the kidney - both are devastating. We don't know for certain how to prevent cancer, but we can be sure of how to avoid total exhaustion.

While writing this message, I became aware of yet another objective of which I had not thought. Consider those parents who decide to keep their children at home. We wash the dishes with an eye over our shoulder, and if the child is not in our vision the world stops turning. Unlike most children, for whose parents this is a normal phase which ends, the worry never ceases for the parents of the autistic child. The child is unable to lead a normal life, to achieve normal tasks, or live completely independently.

By giving respite, we help teach parents to live for themselves. How many times have I heard the question: "Do you have any time left for you?" With four children, no - I don't even know what 'time for me' means anymore. The other children grow up. I see the beginning of autonomy, independence. I am not as essential to my children anymore, and this is very well - it is the normal evolution of life. With Gabrielle, it is contract with the final page was torn off. With children considered normal, we learn how to be detached from them, to let them live their experiments.

For the parents of autistic children, too many doors closed in front of their faces, leading them to become introverted and afraid, much like their child. Giving these parents a chance to relax and take some time off gives them a chance not only to recuperate from this, but also to find themselves again - to stop thinking just for minute about the fears and pains that come with caring for a special needs child. For example, how many times have we heard about a parent having to watch their handicapped child pass away in front of their eyes? This fear is just one of many encouterered daily by those parenting special needs children. The chance to detach from this and other preoccupations of daily life is vital for their well-being.

Once, a medical specialist told me that my child would bring me great joy. I was shocked! It was obvious. If I had four children (from the same father), it is not an error, an "accident"! As the years have gone by I see this remark with a different eye. When my oldest took his first steps at the age of eight months, I was very proud I had on a huge smile. When Gabrielle succeeded in crawling at 18 months, I was moved - I had tears in my eyes. We had won a victory. We should not kid ourselves: nowadays intellectual success is very important. When we give 25 ¢ to a child, it is quickly spent, but when he earns it, it represents hard labour.

I do not claim to have explained autism to you, I only hope to have tickled your curiosity to try to know a little more on the subject, or to ask yourself whether your little neighbor who is so strange is not actually autistic. I am also looking to bring more people to the "Autisme Society" of Lanaudière. Monetary contributions are not my main goal, but rather getting together to be able to give each other means and find solutions.

Next time that a child will steps on your foot in a store, before thinking that he or she is poorly raised, try to ask yourself whether he or she is different. In the world of an autistic who wants to go from a point A with B, nothing exists - he does not see you.

I make a point of stressing that the Town of Repentigny and the "Centre à la Petite Enfance le Petit Brin de Foin" brought a great help to us: with the lending of buildings and materials, we could set up the respite of weekend and the day camp at a lower cost, and still cover the cost of the monitors and caregiver required.

I also thank you all for having listened myself so attentively.

Thank you

photo : La Semaine

Anne Deschamps Co-founder of the "Repits de Gaby" September 1998