Late potential diagnosis

[Geoff6751]

Our son is really struggling with life. Attempts to get support for him and our family have had at best very patchy success. CAMHS were worse than useless. After asking questions relentlessly for a good 10 years now, we believe that our son has FASD. Given all we know about his birth mother etc, we would be extremely surprised if this was not the case. One health care professional has seen all the information we have and confirms our conclusion. I realise that this is not a formal diagnosis, but it really would be a surprise to be told we are wide of the mark on this.

I'm not sure whether he will agree to a referral to the FASD Clinic. He has found his way into the criminal justice system and while in prison he was regarded as a vulnerable prisoner. He has recognised learning difficulties, including a Vinelands Test. Before his release from prison last December, his vulnerability was acknowledged. For the first time he was asking about supported accommodation and the local council offered two alternatives. Those were cruelly withdrawn 5 days before his release and he is now in totally inappropriate lodgings. His budgeting skills are poor (mind you I would challenge anyone to manage on the income he receives). The council has continued to refuse to support our son and claims they don't have the resources (the Chairman of our Adult Safeguarding Board has just resigned, claiming the incessant cuts in funding under Osborne's austerity policies are making it extremely difficult if not impossible to support vulnerable adults).

My fear is that it is all too late for our son. Years have been lost during which he could have been helped to understand his situation. I am very unclear about how well he will be able to cope with life in the future, and whether he will ever learn to budget.

Does anyone have experience of a late 'diagnosis'? How can he be supported constructively? How can we help him to understand what he is capable of and access appropriate support?

[dianakitten15]

Hi there,

My adopted son was diagnosed at age 10 yrs and I am frustrated that he could have been diagnosed much earlier (I asked questions relentlessly for 6 years) and got the support he needed (prenatal alcohol abuse needs to be diagnosed at birth) and I am certain it will be in the future, the All Party parliamentary Group (APPG) has written its intial report on FAS (see FASD Trust Website for a copy).

Therefore, I am really saddened to hear this post, and how the lack of support has affected your son and you, his family.

FAS diagnosis is made at the Genetics Clinic. Speak to your GP about a referral to the Genetics Clinic within your local hospital. Diagnosis is made on past history information (ie. confirmation of alcohol abuse) and also by looking at earlier photographs of your son to look for the related facial features of FAS (although these do not have to be present for a diagnosis to be made). So you need to take the information and photographs along. Therefore, if your son refuses to go you can just explain that when you get there.

At present there are too many professionals involved with varying degrees of knowledge about FAS, ranging from zero to expert. So its currently a luck of the draw situation as to getting the right professional. Again this is due to change.

In summary, the starting point to getting the right support is a diagnosis. Go to your GP (take you info with you as above) and ask for a referral to the Genetics Clinic. (ie. keep it simple, involving too many professionals results in confusion of opinions. If your son refuses to go to the appt, just explain that when you get there. Make sure you take along all the paperwork (ie relating to confirmation of alcohol exposure) and early photographs of your son (if you have them age 0 - 5 yrs best as the facial features more pronounced then. Also, visit the FAS Trust Website and download a copy of the APPG (All Party parliamentary Group Report) on FAS. Incidentally, this report makes reference to the criminal justice system.

Also, I noticed a big change in my son when he understood his condition and realised why he was doing what he was doing (agressive meltdowns). This really helped him to stop feeling so guilty about his actions. Therefore, it may be helpful to get some leaflets (FASD Trust Website) for him to look at.

I hope this helps.

[Geoff6751 in reply to dianakitten15]

Thank you so much for replying to my post. I am so sorry that you have also had to struggle in the same kind of way. I think I heard the comments of the APPG, that seems to be accepting that there are no safe levels of alcohol consumption during pregnancy. My gut feeling is that alcohol consumption should stop from the point that couples start trying for a baby, because we have no way of identifying the actual point of conception, leaving an unborn child vulnerable until some weeks after conception takes place.

I have just received, yesterday, a letter from the FASD clinic offering a telephone consultation. Presumably, the fact that we know that our son's birth mother was herself vulnerable and that she used alcohol to try and dull out the pains of life, makes it possible that at long last we might get some better professional support.

I think that my biggest worry in some ways is that aged 22, our son desperately wants to be seen as 'normal', whatever 'normal' is. So we may have a continued struggle to get him to accept the support that is appropriate to his circumstances.

Anyway, the telephone consultation is a start. Meanwhile, thank you for your reply and your son and your family are in our thoughts.

[SUPPORT_FASD]

The FASD Trust are looking specifically at projects for young adults like this. Please email Simon Brown directly at [e-mail]

[jenniw]

Hello I am sorry you son is in difficulty now, this is what I have been trying to prevent, although my son never lived with his birth mother, I identified little signs that he may be on the FASD spectrum early in childhood.

professional disagreed with me and each other about the cause his of behaviour , these past years they blamed me, it is easier for them rather than saying we do not know. I am referring to CAMHS, schools he attended, the GP and paediatric consultant.

eventually last October he was diagnosed at the Genetics Clinic , not FASD but they found one disability which had been steering the medical professionals in the face for years. Genetics took pictures and are investigating further, sadly I know they confirm he is on the spectrum. He is 15yrs, it taken more than 10 years to get to this point and we have paid a high price.

I tell them frequently my son is vulnerable, but I am not a professional, only a parent so they ignore me.

I agree the Genetics Clinic referral is a good way forward, if I had the advice or knowledge then I would have asked for one 6 years ago. I asked for a referral to the FASD Clinic 4 years ago they will not agree because there is no confirmation of birth mother's alcohol use. It is a constant battle.

The system does not support those who love and care for children with FASD and they are being failed time and time again. Talk to the FASD Trust, I hope things will turn around for your son and I wish you both the best.

[Geoff6751 in reply to jenniw]

Thank you so much for your kind reply. It really helps to know that there are people out there who are treading a similar path to our own. I have now received a letter from the FASD Clinic, offering a telephone consultation. I suspect, as you hint in your message, this is possible because we know about the vulnerability of our son's birth mother and the way she used alcohol to dull out the aches and pains of daily living. Hopefully, the telephone consultation will be a stepping stone to a better future for our son. Thanks again for your reply to my post and be assured that you are all in our thoughts as you continue to get the best for your son.

[jenniw]

I have been very busy supporting my son to come to terms with a diagnosis for another that hit us like a bolt from the blue. Hope your contact with the National Clinic was beneficial and that you are closer to getting a diagnosis,