The FASD clinic: 1 child, 2 days, 3 diagnoses

And so our adventure with Charlotte takes a new turn. Yesterday Pete and I went to the second part of her assessment at the FASD clinic in Redhill, after Charlotte (and me) had the first part there last month. It was intense – six hours of answering questions about her abilities and difficulties and behaviours. But worth it.

We emerged with three diagnoses for her, which was more than I had hoped for. I was really impressed with their thoroughness. The results have helped us to feel massive relief (that we weren’t just imagining it or exaggerating) and yes, a bit of vindication after having been fobbed off with ‘all (adopted) children do that’-esque comments from various professionals.

The FASD clinic

The assessment: Charlotte’s part

Charlotte’s assessment at the clinic looked at various aspects of her cognitive functioning, including her spacial skills, short-term memory, executive function, and language skills. I found it fascinating and could happily have stayed longer to talk to the staff about how it all worked and what they were analysing. It was quite game-based, which worked well – copying patterns, organising things into sequences, following instructions, describing what was happening in pictures, testing visual and aural understanding. I quite wanted to be tested myself. No, really.

Charlotte's assessment at the clinic was fascinating. I quite wanted to be tested myself. No, really. Click To Tweet

The assessment: autism

Our part in the assessment yesterday was mainly taken up with completing the DISCO – a very, very long form referred to by the psychologist we were working with as ‘the beast’. It covers all kinds of behaviours – developmental progress at various ages, social skills, numeracy, risk awareness, ability to understand what’s happening in terms of other people’s needs and emotions, understanding of language including idioms and jokes, lots of different stuff. It is extremely thorough. That resulted in the autism diagnosis – it was very clear. How did we miss that? I wasn’t surprised exactly, but it was more a case of ‘Oh, I seeeee…’ things just clicked into place in terms of her behaviours and the meltdowns.

The assessment: ADHD

We also completed another very quick assessment – no more than 10 minutes – in order to get the ADHD diagnosis. That was something that I had casually wondered about but never pursued, so it was really helpful that they did it as a matter of routine and it was so quick. It made us wonder why no one had offered that before, because once they said it, it was blindingly obvious. She can only sit still when she’s in front of a screen, and she can’t concentrate for more than 10 minutes unless it’s an activity she’s chosen herself.

We’d always been told that was a trauma-related issue, but it seems there was more to it than that. I’m so glad to have a label for it, because that (in theory) opens the door for help. If we know what it is, we can work out what she needs us to do about it.

We’d always been told that was a trauma-related issue, but it seems there was more to it than that. Click To Tweet

The assessment: pFAS

The original purpose of asking for a referral to the FASD clinic was to have an expert opinion on whether Charlotte had an FASD. I suspected it was ARND, having not noticed any obvious facial features of full FAS. But here’s one of the fab things about the clinic – they used photos of Charlotte (obtained with much bribery on my part after a very firm refusal on hers) and computer facial analysis to measure the facial features and found that she does have them. Along with the behavioural and cognitive analysis they concluded that it is likely she has partial foetal alcohol syndrome (pFAS). The only reason we don’t have a formal diagnosis for that is because Charlotte’s birth mum does not confirm that she drank while pregnant.

The same, but different

In some ways, nothing has changed. Our little girl is still the same person she was at the start of the week. Charlotte is 8 years old. Hilarious. Great at jigsaws. Fearless on climbing frames. Able to rage for two hours about breakfast. Unable to tell the time. Really good at cleaning the bathroom sink. Overwhelmed by the idea of tidying her room unless we break it down into tiny steps and stay in the room with her. Devoted to Nutella.

But in others, I feel as though the diagnosis has turned our understanding of her on its head. We had previously believed all her difficulties and behaviours were a combination of attachment and trauma, with the possibility of FASD. (No one told us about the FASD, I just read about it and it fitted so we investigated.) So. No doubt attachment and trauma play their part, as we have always known, but the whole picture of what is going on in her head is now both more clear and more complicated.

We now need to find out how this affects the way we need to parent her, and what we can do at home and at school to make her life easier. In some ways, with all this new information to find and take in, I feel as though I’ve landed on the moon and I don’t have a map yet.

We were previously told it was 'just' attachment and trauma. As of yesterday, we know it's more than that. I feel as though I’ve landed on the moon and I don’t have a map yet. Click To Tweet

Next steps

All this means that there is more homework to be done. I know a bit about autism but need to learn more; I have done no reading about ADHD, so would like to find some resources; and because we had suspected ARND rather than pFAS, I need to investigate the differences.

I desperately want to give her what she needs and do this well for her. The meltdowns we’ve had lately indicate that she is really struggling with something as yet unidentified and I want to sort it out for her.  And of course Charlotte’s diagnoses have raised more questions about Joanna – is she autistic too? (My hunch now is that she probably is.) And so the process starts for her, too – getting the GP to ask the paediatrician to refer her and waiting for the appointment to come through.

In the meantime, if you’ve been here before me, please do share resources that you’ve found helpful so I can start to get my head around this whole new dimension that’s opened up to us.

 

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14 Comments

  1. MummyDibling
    20 April 2018 / 10:54 pm

    Glad you have a diagnosis for your daughter. Our son was diagnosed at 6 with FASD, ADHD, sensory difficulties and attachment. After the initial shock it did help to know and understand more. NORFAS and fasduk are the two main websites I know about.

    • 21 April 2018 / 4:35 pm

      Thanks – I think I might be spending a while on those sites!

  2. Amanda
    21 April 2018 / 4:16 pm

    I read your article with real interest. I’m happy for you all that you have a diagnosis . We suspect our two daughters to have possible fasd,had hand may on the add spectrum. Also attachment and trauma and loss. I was just wondering how you started the process to get to the final diagnosis. We get from paediatrician everything is because of early life experience,trauma and loss. So frustrating. We are lucky the school is supportive,but obviously not Dr to diagnose.
    Thank you for posting your article. And suggestions would be appreciated.
    Enjoy your new journey finding,reading up on the diagnosis to help ans support your little one😀

    Thanks Amanda

    • 21 April 2018 / 4:34 pm

      Hi Amanda,
      This particular path to diagnosis was via our GP – I took in a checklist of symptoms and behaviours and said ‘look, she matches the list!’ and she got the paediatrician to refer her to the clinic. Failing that, my suggestions would be that you see if you can get a psychologist via the Adoption Support Fund who might be able to refer to the clinic, and if that route doesn’t work, perhaps your educational psychologist if school are supportive? To be honest it might be worth trying all those routes simultaneously and just seeing which looks most promising as you go along, to save wasting time waiting to approach one after another.
      Hope that helps – do shout if you have any questions.

      • Amanda
        22 April 2018 / 5:24 pm

        Thank you, really appreciate it 😀
        Amanda

  3. Rachel Hempsall
    22 April 2018 / 7:54 am

    Hi Hannah
    We’ve just had very similar with our 5 year old. Except ours we have to have individual appointments for each part so we’ve just done the pFAS which like you I’d got in my head ARND and again that the reason for it not being full diagnosis was evidence. Our ADOS assessment for autism should be soon but now I see the traits far more clearly.
    We’re on an FASD Facebook group which are good for everyone’s input of “oh my child does that, I found XYZ works”.
    Several people also recommended the book with the green octopus on the front (sorry I’m rubbish with book names) and it’s great as it’s written in small chunks, easy going but so useful.
    Good luck on the rest of your journey. I’m just going down the same route now with our 8 year old…

      • Rachel Hempsall
        22 April 2018 / 9:09 am

        Mine was from watching my friends daughter who is four years older but I could just see us being just like that in four years time. I went to a support group in my area yesterday which was great and picked up some literacy. One I’ve taken a picture of and will put it onto Twitter as I can’t find the resource. It’s from a website http://www.betterendings.org

  4. Mary Joy Johnson
    23 April 2018 / 9:36 am

    Just in the middle of this assessment now with our 9 year old AD. Had the 1st day, 2nd day this week. I have to go alone as my husband has had to go away for work (and can’t link in online like they offer, which is great for those who are far away). Slightly dreading the ‘Beast’ as I am not a form lover (although after doing the DLA form a few times I should be used to it!). Going to take a self care pack of chocolate, more chocolate and headphones so I can listen to some Victoria Wood when I get a break and have a laugh.

    For those interested I went to my GP with all the evidence I had and just told them I wanted her to be referred and that I wanted my GP to contact the Clinical Commissioning Group in our area to fund it. It did take a year and there was a huge admin cock up and the referral was lost, but then I just liaised myself with the CCG and the clinic to plug that gap (sending my invoice 🙂 and they were both great. Looking forward to clarity either way, but also aware I will need to look after myself after the upcoming assessment day. My bub is a shining sun beam of quirky joy and this whole process is simply so I can advocate for her educational needs with secondary school looming. Once we have all the info I’ll be going for her EHCP. Then I am going to go on holiday 🙂

    • 25 April 2018 / 11:08 am

      Don’t worry, the DISCO is the framework for the conversation, so whoever you’re working with does all the form-filling and you just answer the questions. It’s not as bad as it sounds, but I do recommend taking some water because it can get pretty stuffy in those rooms and you’re talking all day. Hope it goes well, and I very much like your thinking about the holiday. 🙂

  5. Andrew Ellis
    23 April 2018 / 9:56 am

    Hi Hannah
    From the perspective of a mental health professional and adoptive father with three boys with additional needs, I’d recommend “All dogs have ADHD” by Katthy Hoopman, and “Understanding ADHD” by Dr Christopher Green for reading about ADHD. With ADHD, there’s the medicate or not to medicate argument, and it can be difficult to get a completely balanced viewpoint as some articles and books will be written from the ADHD doesn’t exist/how dare you give children controlled drugs point of view rather than discuss the benefits/risks of treatment rationally.
    For autism/Asperger’s syndrome, I’ve no clear recommendations for reading.
    Just a general point, diagnoses are ways of grouping patterns of behaviour, and particularly in child psychiatry, there’s an awful lot of overlap between the various diagnoses. Diagnoses in mental health are often labels, rather than the nice clear “this is what’s wrong – this is what the treatment is” that they are in physical health but they sometimes open doors to people taking things seriously!

  6. Gaynor
    23 April 2018 / 10:24 am

    Hi. So good to get somewhere and I need a little help with that if I can ask.
    How do you get the children referred for fasd testing please. After years of trying to find my way I’ve got one tested via school for adhd, which during a medical she referred to him having fasd but no more was said or done regarding this. His brother has physical features and behaviours. Mother drank through all pregnancies. If you could point me in the right direction I’d be really grateful. Thank you

    • 25 April 2018 / 11:04 am

      Hi Gaynor, I talked to my GP, with a list of behaviours and a list of FASD symptoms, and explained what a close match they were. (I think it was this checklist that I used.) She then asked the paediatrician to refer to the clinic as I requested. If you have confirmation of alcohol consumption by birth mum then that should be reason enough to get a referral, but the list of behaviours would probably also be really helpful.

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