Parent's Perspectives
Aurélie and Noah's Story
In France, if your child has autism, whether it's Asperger or Kanner, don't count on anyone: you are alone. From late diagnosis (from lack of professionals) to training of helpers, you have to do it all by yourself.
Noah was born in 1998 from a bilingual french/american family. Premature, low-weight, he was fragile from the beginning. And quickly, we saw something was wrong in his development. His symptoms were actually very classical of autism, but we did not know, as parents. At age 3, we started to see doctors for help: "atypical development", "disharmonious growth", "unbalanced way of life", "confused langage due to confusing bilinguism"... How many different types on unidentified names have we heard from more than ten "professionnals", all pseudo-psychiatrists?!...
So much wasted time, money, efforts. All types of cares were proposed, for the child AND me, the mother (and why not the father?), to dig into what was wrong in our mother-son relationship. Nothing concrete and constructive came out... Of course! Since nothing was wrong with the relationship.
When I realized I was being manipulated, I decided to take control and searched on the net by comparing the "symptoms" of my son. Within a few hours, I discovered on my own that he had Asperger's syndrome. Not one professional seemed to know anything about Asperger's syndrome. Like Noah was the first and only child to have that.
I quickly saw that the little help that existed was going to be costly, and that there was no one to help me. No one except those life savers, parents forums, in which I could gather some "tips" for better care. On forums, parents where telling their unbelievable stories sounding like mine: "fusionnal", "incestuous" "absent mothers", "see-through fathers", "lack of love", ... I realized I was not so alone, and that us, parents, knew much more about autism that "professionals.”
Noah was already 7 when, by pure coincidence, I found one day the address of a center that just opened and was testing new behavioral techniques. I liked their philosophy immediately and contacted them. Luckily, they accepted Noah! The place was like a dream! It gathered all types of recently well-trained speech therapists, special need sports teachers, educators, psychologists... It was not perfect but rapidly, we saw Noah improving at last!
Noah is 13 and he's doing great! He's following a (costly) school program for Asperger kids that allows him to be integrated in a regular class while having special cares according to his needs (there are so little in France, we live in Paris, I realize he's "lucky").
It's ONLY because I, as a parent, fight everyday for my son, that he is improving.
I have to have a lot of energy, money, courage to take out my son from the destiny that the french system can "offer" him. His school integration is possible rather thanks to the good will of "angels" on our path, than a real system made for success.
I am proud of doing this, whatever the cost, but also I am FURIOUS: we will never be able to make up the years wasted by incompetent professionals, who half of them, I am convinced now, knew what was wrong with Noah but never "dared" saying it, knowing they had nothing to offer him in terms of care.
Because the world has to know that France is the country where:
- autism is considered an "infantile psychosis" by most professionnals
- the diagnosis is not announced to parents
- autism is a cureless fatality
- lobbies deny the improvements and research of scientists
- social security reimburse, however, the cares given in Belgium (?) when parents can take their child there.
- parents are asked to become their child's professional
And I can't help but wonder: what on earth happens to kids who are not lucky enough to have a proper treatment, due to financial reasons, or lack of information?
It's ONLY because I, as a parent, fight everyday for my son, that he is improving.
I have to have a lot of energy, money, courage to take out my son from the destiny that the french system can "offer" him. His school integration is possible rather thanks to the good will of "angels" on our path, than a real system made for success.
I am proud of doing this, whatever the cost, but also I am FURIOUS: we will never be able to make up the years wasted by incompetent professionals, who half of them, I am convinced now, knew what was wrong with Noah but never "dared" saying it, knowing they had nothing to offer him in terms of care.
Because the world has to know that France is the country where:
- autism is considered an "infantile psychosis" by most professionnals
- the diagnosis is not announced to parents
- autism is a cureless fatality
- lobbies deny the improvements and research of scientists
- social security reimburse, however, the cares given in Belgium (?) when parents can take their child there.
- parents are asked to become their child's professional
And I can't help but wonder: what on earth happens to kids who are not lucky enough to have a proper treatment, due to financial reasons, or lack of information?
*Aurélie King and her son Noah live in Paris, where Aurélie is an elementary school teacher. Noah enjoys martial arts and playing pool and Aurélie devotes herself to giving and receiving happiness.