How many diagnoses do you really need?

Good question isn’t it. I guess it depends how many you have to start with, what kind of issues your child is having, would additional diagnoses benefit them, what kind of process would they have to go through and would the *new* diagnosis be any better than the original. If you don’t have one at all then then that’s easier to answer.

I was asked if I would be interested in having Sir diagnosed with autism.. but he has a diagnosis, he has Fragile X I told them. I also told them all about how Fragile X is the main single gene cause of autism/autistic like traits so yes by default he probably does have autism.

“Yes, I know YOU know he has autism but he hasn’t been tested for it”

apparently there would also be benefit for his school. Aha. So I said okay, then I was told how I’d have to get to various places to do various tests at various times.. Er.. No. If you don’t believe that he’s autistic now then taking him to places he doesn’t want to be to do things he doesn’t want to do, the ensuing meltdowns may well prove the case better than any tick boxing exercise.

It was after I’d put the phone down I started to think, why was his diagnosis not good enough? If you aren’t aware the only way to diagnose Fragile X is with a blood test, it’s a genetic condition, surely there’s no arguing with that? Labelling him with autism is not going to change that and it isn’t going to benefit him. If he didn’t have a diagnosis then yes you bet I’d take up the offer.. but in this case it would be a waste of time and very upsetting for all concerned.

I know autism is trendy at the moment after all the BBC made a drama serial about it, but just because something is popular doesn’t mean you have to label all and sundry with it. Everyone is pushing Awareness but to be honest those that do have it would rather just like a little more Acceptance.

Surely a better use of resources would be to try and better understand the condition that he DOES have? to try and support him with the issues that come with having Fragile X, of which there are many. Autism, anxiety, hyper mobility are all *symptoms* that come with his wonky genetics.

So if ever they phone me back I’m going to decline the offer and I’m going to tell them why. I’m going to suggest maybe contacting the Fragile X Society or at least looking at their website and getting themselves educated. Perhaps they might find some useful tools to help some of the other kids. Hopefully though they will find that Fragile X is a valid diagnosis and you really don’t need any others.

 

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