Does a formal diagnosis actually achieve anything for the child?

I have suspected 'something' was wrong since my adopted son was 3. Contact social services when he was 4 because endless behavioural problems at school and immediately put on IEP (i didn't know what it was at first). Social services invited me to CPD course on FAS and I expected none of it to apply but was actually horrified how much it actually did apply. Got referral from GP with help from social worker but paediatrician ruled it out due to no facial features. I have not revisited this yet but it is nagging at me. I have heard so many stories of difficulties getting diagnosis and was wondering what it will actually achieve if I do go at it hard and get a formal diagnosis. I know that it will be a very stressful and long road. My son is 7 now and we're having a relatively smooth patch at the moment which gives me hope. I never know how long it will last and dont want to be the reason that he misses important opportunities. He is a lovely kind and generous boy with a brilliant sense of humour and my visit to the paediatrician meant that I had to discuss lots of negative aspects of his behaviour and I'd rather not put him through this. Self esteem issues are already evident.

18 Replies

oldestnewest
  • Hi,

    my adopted son (now age 8) does not have any facial features of FAS but it was suggested by the geneticist that he has FAE, foetal alcohol effect. The paediatrician suggested the referral to a geneticist as due to my sons unknown history it would be very helpful for him and the paediatrician to have their expertise on board. I have been lucky with my dealings with medical personnel but am a nurse so this might help a bit.

    This has affected him educationally and physically more than behaviourally but having the fact documented that FAE cannot be ruled out has been quite helpful for us. I also had an educational psychologist who saw my son take a great interest in the foetal alcohol spectrum disorders and included it in her report along with some really good info booklets for all concerned in his care.

    I have given his school and his older sisters school lots of information on FAS, I am trying to spread the word that they may be seeing this more often than they realise and that they are not just seeing a naughty child! Whether they read it is another matter however if they come back to me with a concern I ask them if they have read the information i have given them?

    Where it has not been helpful is with general conversations with other parents. I do not want to mention FAS as it takes me down a road of revealing private info, such as adoption that I really do not want to discuss with every tom, dick or harry!

    It sounds like the paediatricians assessment was quite limited, in recognising what criteria constitues the suggestion of FAS. However I agree with you it is horrible because all you seem to do is talk about whats wrong what they can't do etc, all so negative. I took my mum along so I could discuss these things without my sone in the room and also typed up a synopsis for the Dr that could be read before the appointment as well.

    I know exactly how you feel!

  • Hi Rahael and Minky, I foster 2 boys who are( in my humble opinion) DEFINATELY affected by FASD I have no chance of a diagnosis as there are no facial features and although there is admission of alcohol abuse from early teens and up to long after losing her children, mum will not admit to drinking "during pregnancy" I have researced, attended courses and conferences ( I work in childcare) and have even asked for a diagnosis saying " neurological disorder consistent with or the same as FASD" Like both of you the thought of sitting with FC who already have confidence issues and describing the worst of their behaviour again and again is not good.

    I do not know if I will press much further as I am not finding supportive professionals but DO think that diagnosis is important, someone said on another forum ... If the stomach problem is not diagnosed that is appendicitis .... Disaster similarly with diabetics ... FASD can lead to very serious problems as an adult that with early help could possibly be headed off at the pass, mainly depression and self harm or a life of crime. I don't want to sound dramatic but do think it is important.

    I'll cling off my soapbox now lol.... Not disguising my frustration too well

  • Hi Berniebubble,

    I too have a soapbox that I jump on and off too! For me having 'it is not possible to rule out Foetal alcohol effect' was as close as it got and I have used that as part of my 'ammo' for getting what he needs.

    I just say he has FAE as well as a few other diagnoses and everyone has accepted that, they have even included it in their own reports and luckily the neuro paediatrician has written he has foetal alcohol syndrome (I have not felt the need to correct that!), I am happy to quote it frequently!

    I have been lucky that I have secured a statement for him (lucky to have a supportive lower school) and the medical services such as SLT, OT etc. I read this book once about how to be a velvet bulldozer and have utilised it at some level ever since! I have got the bulldozer bit right am still working on the velvet bit!

    Luckily for me (I think) I have been a nurse for 25 years and used to be a manager in a neurosurgical unit so have been able to put my point across in their language so to speak, I don't know if this has helped or i have just been lucky but will continue to question what they do and persevere until i get what I want and what my children need (oops the soapbox is back out too!)

  • Would DEFINATELY settle for " not ruling out" and love the sound of the velvet bulldozer, like you I need to work on the velvet... But have found if you are subtle at all it can be ignored, I have another assessment on Thursday and i and am going to write down examples of behaviours and send it so he doesn't need to hear it again.... I am going to a FASD support day tomorrow to meet up with some families and am worried that the term is mentioned as his mum would hit the roof if alcohol was mentioned and will absolutely not let anyone have access to her doctors records

  • I did a history of information I had about the BM, mentioned evidence of being witnessed drunk (but that was all) and any interventions prior to them coming to live with me. I also put down all surgeries etc, then mentioned how he behaved, his educational stuff etc and put a couple of quotes to support them by the involved professionals (salt, ot, ed psych etc) plus a breakdown of what I had done to address them to and whether or not they had been successful.

    Then how he was presenting now, current issues. I know it is slightly different for you as you do not have parental responsiblity(sorry if I have that wrong, no offence intended) like i do post adoption order, for me i just said that it would be futile trying to ascertain whether the BM had drunk regularly due to her non compliance and being a poor historian but that this should not deflect from the fact that this should not stop them factoring in some unknowns to formulate a probable diagnosis, or as they said for mine being unable to rule out fasd, if they are unable to rule it out then they should document it.

  • Mind you should and would are two different things as we all know!

  • You are right.. No parental responsibilities and no evidence of alcohol use ( during pregnancy) plenty of rehab attempts, domestics, alcohol related hospital visits, recent very ill health not sure exactly what but she told the taxi driver who was doing the contacts for the boys that it was "acute pancreitis " which she now says it is not I asked CSW to try to find out in case she is about to die ( sorry to sound so cold ) but it is the boys I fear for if this happens and they don't even know that she is ill. All this!!!! Surely we could use the .... If it walks like a duck... Quacks like a duck .... Surely we can call it a duck ... Or at least not rule it out lol

  • Thanks so much for your responses. Definitely nice to know that I'm not alone. I know for a fact that the BM drunk during pregnancy so proving this is not a problem and my son was also born addicted to opiates and went through withdrawal for the first 5 weeks of life. I initially thought the drugs would have been the biggest cause of problems but later found out that alcohol causes the most damage. I have recently become a foster carer and have noticed my son's behaviour regresses quite quickly if the environment isnt managed properly as my foster son is only 2. But he is so kind and gentle with this little boy that I'm torn as to whether me fostering is good for him or bad for him. Jury's out on that one and we've told him that he can decide whether he wants another child in our house or not once this little one goes on to be adopted. He's had support at school via School Action Plus and has improved enormously at school due to this being 1 to 1 tuition. The fact that he has improved means that the 1 to 1 has now been removed but his teacher believes that he benefits greatly from learning with no distractions. It is probably this that is prompting me to do more. But will a diagnosis guarantee him the additional educational support he needs? Education is my biggest problem as this is where his confidence and self esteem are likely to take the biggest beating over time.

  • Diagnosis matters because support and knowledge out there is improving, (slowly and still postcode lottery), but in time it will be much better and if you have a diagnosis then you will be entitled to access that appropriate support. Secondly, it matters for the child. They are going to live with this condition for life and they need to know, understand and own their own disability as it will affect them long after we have gone...

    Have you checked out The FASD Trust's resources for teachers? And, also looked at the App for the kids which explains FASD to them and their friends?

    Best wishes to you all.....

  • A diagnosis is Important. My niece who has just turned 12yrs and is going to be tested for FAS as after an all round assessment the Pediatrician suggested she may have FAS as she has some of the facial features. Initially we were not going to pursue further testing as the pediatrician had said " I had done a good job with her" and a diagnosis would not result in any additional help. I was shocked that there would be no additional help, as there are areas where I feel she needs help but they are obviously not profound enough. After doing lots of research I realised the importance of a diagnosis in case she needs any help in the future. I also want her to be able to understand why she finds it difficult to do certain things and why she reacts to loud noises as she had lost her confidence. She is a delightful happy girl who has given me a lot of pleasure. She has a reading and spelling age of a 15yr old and thankfully her school have been fantastic and very supportive. She is now receiving additional help with her maths and her confidence is improving.

  • My daughter is 3.5 (adopted since 1) and she also doesn't have the facial features. Her preschool queried some of her behaviour and sensitivities (light, sound) and we are now mid referral process. She also has an IEP in place, and is due to see the Ed psych next month. We're now just waiting for the referral with the paediatrician (who is waiting on Ed Psych and the Early Year Inclusion service (Ithink) report so that they can take over). I will definitely be gunning for a formal diagnosis along with strategies though. It's good to note that on the report from the Early Years people that they mention her BM's drinking habits so that it's showing as a potential cause. We're lucky to have a good preschool as we would like to get the support put in place early to minimise the stress when she starts school in September. So just like the adoption process, we are "playing the game" for now

  • Hi everyone,

    I have read all these posts and many more in other forums and listened to people affected by fas directly. I have also asked myself the same questions for the past 7 years.

    I am probably going to be a bit controversial now and by no means would I ever intend to offend anyone.

    My son has a diagnosis of Fas. BUT... Unless that diagnosis is given by a professional experienced in diagnosing and understanding Fas, it can be counterproductive. It means that you do not get given the correct information and the appropriate interventions. It merely becomes a label.

    The label might help with obtaining DLA or a IEP for school but both can be obtained without a diagnosis of Fas. If the diagnosis is given by someone like a community paediatrician after some preliminary genetic testing and admission of alcohol misuse when it is thought that the child has some facial features, it might not be accurate. An incorrect diagnosis can be just as damaging as the correct one.

    So, sometimes in an attempt to seek a diagnosis so desperately, there are professionals who think they are experts and will give one.

    Each child who has Fas presents differently. I have attended training, conferences and been disappointed with comment like " these are the children who ..." What if your child does not exhibit this or react like this? Information on Fas is given to schools and they quickly get overwhelmed. The IEP gets based on Fas in general with expectations that your child will behave in exactly the same way as the information on Fas given. When they don't, confusion exists, suggestions made that perhaps the diagnosis is incorrect and then your own doubts creep in. If a diagnosis was the answer, then we all would not still be fighting the education system for what our children deserve.

    The information on Fas is not positive to say the least and lately I have heard so much resignation to " we'll that's how it is" . Years of only reading negative information and surrounded by negative people takes its toll and affects the child too.

    It is documented that fas presents like RAD, ADHD etc. However most of the children who we speak of have been in the care system and can struggle with these issues too separate of Fas.

    Added to this are very serious ethical issues in giving a diagnosis and that child coming to terms with the fact that their birth mother inflicted this upon them.

    I am not against diagnosis but in my opinion, it has to be thought through carefully, given by an experienced professional in Fasd. I do not think it should be the prime focus and become all consuming. Rather look at the child, individual profile, history and focus on their strengths, seek out the professionals that can help with areas of difficulty. This can also be time consuming but can have huge positive benefits to the child and carer.

    There are strategies that can help, there are therapies that can help. You might say, well that's all very well for you, you have the diagnosis. Yes we do, and that's why we know of its disappointments and limitations. Now that we have not needed to pursue it and focused on what we can do, we have all taken great strides forward and their has been huge improvements in our sons ability to function.

  • Hi Maclean

    Your comments are very thought provoking as I too have grappled with is there anything positive to be gained by diagnosis. I know that my niece will be seen by a geneticist who I understand are the only professionals in the United Kingdom who are qualified to diagnose correctly. I too have an issue with how my niece will react if she is diagnosed with FAS as she still has regular contact with her mother. We are initially going to see a genetic counsellor and will take it slowly from there. You have listened to people directly affected by FAS - do they all find it difficult to come to terms that their mother drank during pregnancy? Thank you for your advise.

  • Hi, I don't suppose every single person really blames their mother as such. The difficulty is that it takes quite considerable insight into what causes alcoholism in the first place if that is what has happened. It is not everyone who possesses such insight, affected by fas or not!. If a mother did not know that she was pregnant as most do not or that alcohol is in fact harmful in pregnancy as many do not know, it is still a stigma for both mother and child and one that really needs addressing. A significant number of children who have fas think in ways that are very different to others. Add to this the fact that, like many children who are adopted, feel rejected and unworthy. This is often regardless of how much they are nurtured and loved by their adoptive family. They FEEL different, so telling them that their birth mother caused their difficulties is like rubbing salt into a wound.

    HOWEVER, for some it can be a relief to know the reasons behind their difficulties. Proof of drinking during pregnancy is essential and absolutely morally right before pursuing a diagnosis. Thereafter it depends on how it is conveyed and what is done with the diagnosis. If told in a way that conveys compassion and understanding of the birth parent and some positive interventions are sought, then it can be an enormously good thing for everyone. All too often, I have heard comments made in ear shot of the child that are derogatory of birth mum and the child is given little hope and encouragement for the future due to the negative press on fas. I am in favour of support groups and education regarding fas but in our mission to do so, it is easy to forget that we have a child who does not want reminding every day that they have fas nor that their own flesh and blood inflicted this upon them.

  • Hi, I have 3 adopted children and 2 have a diagnosis. The reason for this is that having a 'label' was the only way to make the education system pay attention to their needs. Sadly, our education system doesn't always recognise individuality. My son has Attachment Disorder and without an official diagnosis his behavioural difficulties would have meant he would have been excluded from college by now. It has only been recently that my son has shown any interest in his 'label' and it has played a key part in him being able to reflect in a way that promotes personal responsibility, rather than self blame. My daughter has always been aware she was adopted and 'learns differently' because her birth mother drank heavily during pregnancy. Being diagnosed as having FASD reassured her that she was not the only one. I would not advocate for diagnosis for every child, it very much depends on their personality and what you hope to achieve by having a 'label.' It certainly wasn't appropriate for my eldest son, who was 7 when I adopted him and was very protective of his birth mother. We did not wish him to have any sense that we or the doctors 'blamed' his birth mother in any way - which of course we didn't. There can be difficulties in having a diagnosis. When my daughter started secondary school she told everybody that she had FASD, but she didn't tell them she was adopted. This resulted in many parents making excuses for their children not to come round to play - they thought I was the birth mother with alcohol addiction. It took a while to sort this confusion out! Now aged 20, 16 and 14 my children are all proud of their achievements in the face of difficulties. They are who they are and labels are just a way of quickly explaining something to those people who struggle to accept individuality. Zanne.

  • I've only just joined the forum hence the delay in addressing this issue BUT I DON'T GET THIS.

    If a child breaks a leg one doesn't expect to get into a discussion about how the leg was broken or whether it's really broken; one expects to receive confirmation that the leg is fractured and appropriate treatment provided to help it to heal. So why should the process be different for a mental condition rather than a physical one?

  • My two are now in their mid 20's one full FAS one FASD, both diagnosed and doing OK also living and working independent. Not Much about for them as youngster's 27 years ago , had do our own research apply own interventions. Both still have all associated problems but have been brave and worked through it, all children will have different needs no two are the same. Would be better diagnosed as a low tolerance chromosome disorder rather than FAS or FASD . tagged with autism, ADHD. Do hope all will be OK for your children as Adults ours are great there can be light at the end of the tunnel. Been a very hard and long journey but worth it , We are even Grandparents too lovely children.

  • My son is 22 and I am only just exploring the possibility of this after many years of problems. Being an adult now I wonder whether diagnosis is now futile but on the other hand will it make his behaviours easier to accept, either to others or for himself? I would be interested to hear how your two have presented and any strategies for help.

You may also like...