Autism and ASD

Having a daughter who is autistic, I've had a roller coaster ride trying to get appropriate services/education for her.

Anybody else have any experiences to share?


I had work with ASD for 7 years.

We can discuss in the details if you need support.

Best Regards,

Hi Marion,
I have two sons with a dual diagnosis of Fragile X Syndrome and Autism, we are thankfully past school age but obviously needed to get paperwork done to register them as disabled.
Look up your local assistant(e) social(e) and make an appointment to see him/her, they will go through all the paperwork with you and fill in what needs to be filled, you will be asked to write a “Projet de Vie” which your/her doctor will sign and you will also have a visit from a specialised social worker who will ask you questions relating to the PdV and basically what support or services you would like.
For us there were very few (no) real options, being English speakers with no French means that any groups or clubs aimed at others like my boys were out of the question, my boys are difficult to understand in English when they’re struggling to cope so being in an environment where they are surrounded by solely French speakers isn’t really an option, likewise for any shared or group living establishments.
There is funding to which you would be entitled (under the old system, I have no idea how this Brexit malarkey will affect that) but unlike the UK where a parent or guardian can have payments go into their account, the child must have their own bank account for payments to go into, clearly in the case of a child who has no understanding of bank accounts and money the parent has to be in control of said account. You can only do this by getting the child assessed by a court registered specialist (in the case of a child with autism it will be a psychiatrist - no idea why they think that’s the appropriate specialist) then attending court with the child for the judge to declare whether or not the child is competent enough to look after an account or whether they need a parent/guardian to do so.
Unfortunately for us this was the stopping point, there is absolutely no hope of us ever getting either boys to be assessed by a strange doctor without harming themselves, us, Dr and/or the room let alone attending a court room with strangers. We have, since my sons were too big for me to contain, been lucky enough to have a Dr who will come outside to the car to look at them should they need to see one, thankfully they very rarely need to, just once in the seven years of being here. This obviously means we have no support either financial or physical and the boys are with us 24/7, they come to work and “help” us at work.

When I did it for my two it was a pretty simple process and much less hassle than the equivalent in the UK, it didn’t take long to get their disability cards and they’re covered completely by the health system.

This was all pre Brexit, I have no idea how the current shenanigans will affect the paperwork, good luck :blush:

Thank you for your reply. My post is from 9 years ago. I am now a qualified ASD specialist and researcher and my kids are grown up. I didn’t ask for help only other people’s experiences.

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OMG! Marion that must be some kind of record having to wait almost 9 years for a reply!
Great to hear that everything worked out for you.
Hopefully now, with more awareness , diagnosis and acceptance of ASD, Autism and the like, members will be more willing to come forward and respond to future questions and associated topics.

To be honest, I forgot that I had written the original post until I got a reply…
There is more awareness about ASD now but the powers that be are still a long way from actually putting in place specialist services throughout the country. That’s why I decided to work with families who have no solutions. Having raised 2 autistic kids alone without any help for the first 12 years, I really do know what it’s like.

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So for any future queries from SF members it looks like you and Dorinda will be the resident experts. :smiley:

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It would appear so…

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An incredible achievement on the part of yourself and your sons. And congratulations on adopting a career to support others faced with similar challenges.

Despite the current fashionable celebrity dilettantism around ‘mental health’ and ‘talking therapies’, there are no votes in long-term support for people with unglamorous mental disorders such as dementia, psychosis or disabling developmental disorders.

Just wilful political ignorance and, for some in a crisis, stigmatisation, custody in locked and repressive ‘units’, or prison.

In fact there is lots of money being given by the state to supposed specialist services - which are being run by psychoanalysts who refusee to put in place internationally recognised empirical-tested therapies.
Further, successful pilot projects utilising those therapies, such as the Centre Expert Autisme in Limoges, which was the ONLY centre in France offering specialist interventions for under 6s, are being shut down because it’s unfair for one area to have services that other areas don’t have!!! Go figure…

I will…:roll_eyes::slightly_frowning_face:

But my experience of French provision is very limited and anecdotal. The sum of my personal/parental and professional involvement has been outside France, so I value your own, thanks. :hugs:

Oh heck, I didn’t even look at the date! :scream: So sorry for the assumption that help was required, but glad you have indeed come out of the other end of the maze and are making a difference for others :blush:
Info on ASD or for that matter any kind of help is difficult to get unless you know someone who has been there, otherwise it’s an uphill struggle on a very slippery slope. But, it’s far easier than getting anywhere with Fragile X related issues, FX is a genetic chromosome abnormality that was discovered in the 70s (hate to imagine how people with Fragile x syndrome were treated prior to this), it’s the most common inherited cause of autism (but not all those with FXS also have autism) and the most common known inherited cause of learning disabilities yet still the majority of Drs and medical staff have never heard of it, and of those who have, many still have information that is very out of date and wrong.
It’s getting better but very slowly, many in the medical profession will put that the person has autism instead of FXS simply because it’s more recognised and more likely to get boxes ticked than FXS even though FXS is a genetic condition that is diagnosed with a simple test (blood or mouth swab).
Our Dr here, even though he’s more willing to learn about it than our Dr in the UK was, told me it would be better to put autism as the primary diagnosis and FXS as a secondary diagnosis on the boys’ paperwork as that would instantly mean they were entitled to a disability card, free healthcare etc. That’s like saying you have cancer but as you’ve lost your hair due to the chemo we’ll say you have alopecia as that’s easier to see. I‘m “lucky” that my sons had a dual diagnosis, I do wonder how parents of children with FXS without also having autism get on! Surely it would be better to educate medical staff as FXS affects so many people - 1 in 4000 males and 1 in 8000 females.