Autism: a personal story
A few weeks ago, our six-year old finally started at our small village primary school, in the south-west of France. Nothing gave us more pride than to see him running across the crowded playground with his little satchel, smart new hair- cut and Harry Potter glasses, lining up for the CP class as the bell rang.
Few parents, or children for that matter, could have guessed the long struggle and the thousands of hours Louis has put in to get this far. Except for one obvious sign, that is: the young classroom assistant helping him because of his autism.
Louis had been a curious, wide-eyed baby, and achieved all the usual landmarks, sitting up at six months, crawling at ten, walking at fourteen. But then one day, around 18 months, his babbling stopped, and he became withdrawn, constantly obsessed with his toes or hands, refusing to look us in the eye.
We were fobbed off by our local GP, who told us that “all bilingual children talk late” and that anyway he was too affectionate to be autistic. Sadly, GPs and paediatricians in France receive little or no training or information on this subject, only knowing the stereotypes, so often fail to make the crucial early diagnosis. Another doctor suggested hearing problems, while eye tests discovered he had astigmatism. But both an ear operation and glasses failed to bring about any real change. It was only when I went to see a specialist paediatrician and broke down in tears at the strain – Louis was by this stage dancing in circles without music – that we were referred to a neurologist at Purpan children’s hospital who carried out an MRI scan but failed to find anything unusual.
We were referred on to a specialist TED (troubles envahissantes de développement) department at the La Grave Hospital in Toulouse. By the time we had gone through another lengthy waiting process for diagnosis tests, Louis was three and a half and still did not speak or understand when spoken to. The diagnosis involved four days of tests and observation by a multi-disciplinary team, all of whom had busy schedules. I have since learned that if you pay a large fee and go private it is possible to get diagnosis within a week.
When we eventually arrived at the point of receiving the diagnosis, Dr Maffre, the psycho-pediatrician in charge casually informed us: “You do know, of course, that we offer no treatment for autism”. Nor did they offer us any counseling or advice as to how to go about getting it.
All they gave us was a mobile phone number for the only suitable state-funded project in Toulouse, SESSAD, run by the charity Ceresa, recently set up and still in portacabins. After further waiting for an interview with this programme, we were informed of ‘at least a three year wait’ – another lifetime for Louis, zapping his entire phase of language development and maximum brain plasticity.
After this life-changing news, we had to dust ourselves off, pick ourselves up and start to fight our way through the maze of red tape and acronyms (see below) in order to try to get a special needs allowance, or AEEH, to help towards the cost of treating him privately. For some inexplicable reason, speech therapy is reimbursed, but a psychomotricien and even a psychologist is not.
In France, there is no one national body, like the National Autistic Society in Britain, to point you in the right direction. On the one hand, there is a plethora of local parents’ associations, advocating a confusing array of different therapies. On the other, the powerful psychiatric lobby, which traditionally holds sway in hospitals. Often they avoid using the term ‘autism’ in diagnosis, instead referring to ‘infantile psychosis’ to justify treating patients in psychiatric institutions. Heavy medication and psychoanalytical rebirthing treatments, such as ‘packing’ (swaddling a naked patient in ice-cold blankets while a psychiatrist tries to talk to him about his feelings) are still used.
Thankfully, Louis’ time was not entirely wasted during the two year struggle to to get a diagnosis. We had enrolled him at a bilingual maternelle, the International Montessori School in Grenade, (montessori-toulouse.com) from the age of two. Not only did its multi-sensorial approach allow him to learn at his own pace, but the more time he spent with his peers the more progress he made. It was here that they picked up on the early signs of a problem, and allowed us to bring in a volunteer to help our son. However, because it was a private school, we did not have the right to a classroom assistant or auxiliare de vie scolaire (avs). The school brought in an American consultant, Dr. Diane Fraser, to observe Louis and the next day, these few words from a busy consultant in a hastily written email fell out of the computer like bricks: “Your son has signs of autism.”
The bricks attached to my feet and I felt myself sinking to the bottom of a lake. In retrospect, I know we were lucky to have relatively early warning. The consultant advised us to start using ABA (Applied Behavioural Analysis) therapy and we joined a parents’ association, Léa pour Samy, in support of a ‘FuturoSchool’ project using ABA to help autistic children in Toulouse. ABA has been used with great success since the 1960s in the US and northern Europe, but is not yet recognised in France. In its purest form, ABA advocates 40 hours a week of intense stimulation from an early age.
We began thinking about his move to primary school over a year ahead. At first we had interviews with a couple of private schools which had been recommended, but they found excuses without even meeting Louis. One left a message on the answer phone suggesting that ‘a child like him’ would be better off in a CLIS. I subsequently found out this was a special class for all types of handicapped children with ‘cognitive problems’. Since Louis was a year ahead in mathematics and reading and writing, I did not appreciate their advice.
We are lucky that a national French law allowing the integration of handicapped children into their local school was finally passed in 2005 (the equivalent law, the Education Act on inclusion, was passed in 1981 in the UK). We decided to set our cap on the local village school, and began familiarising Louis by trying to enroll him at the Centre Aéré, which was in the same building. We were taken aback to find that even to go here, Louis would need permission from the Ministère de Sport et de la Jeunesse.
While our application was making its way through layers of hierarchy, we managed to get permission for Louis to attend on Wednesday afternoons with an assistant from the FuturoSchool, who provided proof of insurance. In order to obtain the right to a classroom assistant, or auxiliaire de vie scolaire (see pink panel above) all the professionals dealing with Louis had to provide a written report, and his dossier was then studied by various multi-committees and submitted to a Commission of experts, which only sits every few months.
During the summer, we were finally informed that Louis had the right to a classroom assistant for 15 hours a week, but, on the great ‘Jour J’ of his rentrée, the young woman who had been allocated to help Louis still had not received her timetable or contract: we had a legal right to put Louis into school, but all he was doing was colouring in a corner or wildly misbehaving when it all got too much. You can understand our immense relief when Louis’ classroom assist- ant finally arrived and now he is gradually beginning to find his feet. Despite the new law, current funding cuts mean that it is often diffi-cult to get more than a few hours of help from a classroom assistant per week, and many schools and teachers still have little or no experience of autism.
France has many years to catch up, but hopefully an important sea change is finally underway, which should lead to more children being accepted despite their differences.
www.autismes.fr/ is the Association Nationale des Centres Ressources Autisme (ANCRA)