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We went through this checklist and managed to think of examples for all but about two of them for our eldest. I think it's worth using prior to seeing geneticists or the paediatrician as it's certainly helped us focus on the relevant information and experiences to share with them. Thanks

What upsets me is being told by SS that my daughter couldnt have FAS as she didn't have any physical symptoms and yet she has virtually every thing on that list. She is nearly 19 has many problems and we were abandoned. I now don't have the strength to fight. What on earth is the point if no one can do anything any way? Sorry feeling a bit tired and negative

Curly - I've been doing some research on FASD as I now think my kids have it. One thing I came across was that the classic physical symptoms are only the result of drinking in a specific time period in early pregnancy - so there can be no physical symptoms but a child still has FASD. I was told last week that mine couldn't be because they don't have a low IQ - again another nonsense statement!

That's interesting Bop. I'm not sure at what point she was drinking but I know it was a hell of a lot and I think it was probably right through pregnancy. I'm sorry to hear your children have it and you have experienced silly comments. It's very frustrating.

https://www.gov.mb.ca/healthychild/fasd/fasd_hiddendisability.pdf I found this enlightening!

That's great - I am forwarding that to Southwark social services. Thank you Donatella!

http://www.appg-fasd.org.uk/download/i/mark_dl/u/4013133754/4625658887/APPG%20on%20FASD%20Initial%20Inquiry%20Report.pdf Something else to send to them. Our own parliament has been slowly waking up to this problem and has found we are ten years behind in our understanding of this. FASD is hugely under diagnosed, largely because so many birth mothers and social workers deliberately underplay the problem because of the shame and stigma I believe

Thanks fargum!

yes! If your child has none of the physical symptoms, but all or most of the emotional & cognitive symptoms, you need to be considering ARND (Alcohol Related Neurodevelopmental Disorder) which is part of the Foetal Alcohol SPECTRUM (yes FASD is a spectrum, like autism is a spectrum disorder, with a range of difficulties included). Unfortunately for you and me most CAMHS and paediatric departments have never heard of it, and we have to do lots of educating of professionals. They will also try to ignore it because it's not a diagnosis which gets you access to lots of services (unlike ASD) so they say 'what's the point?' The point is, that there will never be any services to help these kids if none of them ever get diagnosed, and the few diagnoses which happen are ignored... So we have to wake up to this, and help those in authority wake up to it too. I get so frustrated when professionals don't care about / ignore mention of FASD and then want to continue 'helping' my daughter with diagnoses which are only partial (eg: ADHD) and treatments which are pretty ineffective (eg: ADHD medication). FASD is massively misunderstood, massively mis-diagnosed and undiagnosed, and the subject of massive ignorance all round, yet is it is a MASSIVE PROBLEM!!! Rant over... you caught me on a bad night!

I have suspected FASD with my son who shows none of the physical traits and is quite intelligent. There is however a reasonably high chance that birth mum was drinking, possibly heavily during pregnancy, and he fits many other traits. GP didn't quite know what to do when I spoke to her. She ended up looking it up on the NHS website, which is probably less useful than some of the ones I had looked at before going see her. She then had to look up where to refer it to, she was reading something from CAHMS and it didn't seem to include it and I basically said there has to be someone who can assess my son to see if he has this you've got to refer it to someone. She decided to refer to paediatrics but they sent the referal back and so she referred to CAHMS instead and they didn't reject the referal, but that's as far as we've got so far. Talking to the SENCo this week she suggested that maybe I should just make a request for an assessment for ASD as it is more easily diagnosed than FASD. I did think something like you said chocoholic, if nobody asks for assessments for FASD then nobody is going to learn more about it. Especially if we're 10 years behind because nobody wants to believe it's a problem, avoiding it is not going to help that misconception. (Although in the SENCo's defence she wants something to help with the application for an EHCP and the extra support that comes with it)

Brown-eyed-girl: You need to be referred to the only specialist NHS clinic in the country for FASD, if there is no local expertise (and there obviously isn't) It's with Dr Raj Mukherjee at www.fasdclinic.com - You can be referred by your GP or, more likely, by CAMHS. We have been referred by CAMHS & accepted in principle, but we can't go on the waiting list officially (which is about 9 months long) until the local Mental Health Commissioning Group agree to fund the assessment (around £3,500). The funding request was made in September - we are still awaiting an answer. I assume we are now waiting for a new financial year. I remain deeply frustrated, but in principle don't want to fund it myself unless they tell me they're not going to... I think what I am saying is, if you go down this road, don't expect it to be quick... but I do expect it to be worthwhile.

Thanks for posting this Pluto and everyone else for the links and information. It is really helpful and timely for us. Potential FAS was 'vaguely' mentioned during placement 5 years ago but dismissed as my son had no physical symptoms. I can work my way down that column and answer a resounding yes to all but 2 symptoms and even then he has them but not just prevalent all the time. I was asked by CAMHS why I thought my son had FASD and did talk about thinking in terms of ARND rather than traditional perceptions around FAS but they immediately talked about physical symptoms. I talked about the cognitive and behavioural indicators but I don't think they were on their crib sheet. I am going to be really interested to see what the outcome is and where we have to go from here. Thank you again