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Paddingtonmum March 8, 2019 12:48

Hello. I am a long term lurker on these boards and I am hoping some one can help me out. I have two adopted children. AD is 13 with no formal diagnosis and is really struggling with life and school ( and school struggling with her). The paediatrician informed me AD is too complex to diagnose, though she concedes she possibly has FASD, attachment, ADHD traits (though not enough for full diagnosis), Sensory integration issues and possible ASD. She has had trauma informed sensory OT assessment (through ASF) and has been on the ASD assessment waiting list...but itâs years long in this area and is a girl so may not get a diagnosis. Sheâs considered defiant and oppositional at school (well out of normal range), and while they finally now recognise she has SEN and isnât just naughty / badly bought up (!) they struggle to manage her and she skirts with exclusion frequently. Sheâs resistant to anything she suspects is support or therapy....though she tolerates her long term ASF funded child led psychotherapy as sheâs in control. She has little empathy and dysregulates a lot. She can be very verbally and physically aggressive. At home I try and parent therapeutically and use NVR strategies. Can anyone suggest where I can go or recommend anyone who can do a full assessment??? I have been advised to approach the local health commissioners directly with a specific place in mind. There is nothing or nobody in our area. The paediatrician poo-pooed my need to get a diagnosis and isnât helpful. We live in the south of England so I can get her anywhere in the south or south-east, though Iâm getting pretty desperate so anywhere in the Western Hemisphere would be considered ok. Any help really appreciated Paddington mum

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Donatella March 8, 2019 14:29

Paed needs a kick up the bum I think. So many see a diagnosis as a mere label and not helpful whereas in fact a diagnosis can bring a lot of help. Do you have a different paed you can request? We see a paed whoâs the adoption panel member so understands a lot of the different issues. Wondered whether youâd come across PDA? I have two children who have been diagnosed ASD. Heâs Aspergers and sheâs PDA - they look completely different and require different strategies. Are Camhs involved? Ed psych? I know parents who have used the following for assessment and diagnosis. Not cheap but theyâve thought it worth the money http://dyscovery.southwales.ac.uk Alternatively can your pasw suggest anything?

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Paddingtonmum March 8, 2019 14:48

Thanks Donatella. I agree about paediatrician but sheâs top dog here and well known for refusing to diagnose, so bit tricky. Yes....definitely ticks all boxes for PDA. No Camhs involvement as would suggest psychotherapy and we have that. Camhs here not got the best reputation. School asked a Ed psych for advice....but all a bit wishy washy and not practical as her suggestions were based on a cooperative child, which she is not !! PASW didnât have any ideas really but I will ask again. I will look at your suggestion so thanks. Also I hadnât thought of paediatrician on adoption panel....I will find out who this is....thanks x

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Donatella March 8, 2019 15:08

If pda is possible then it can help - profs/school particularly - to remember that most behaviour is anxiety driven. My daughter is in special provision and weâve worked closely on recognising and managing her anxiety. Weâve put together an anxiety scale so we can see where she is on that scale and then certain strategies are put in place at each point - hopefully avoiding the escalation. So far, so good!

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safia March 8, 2019 15:49

I seem to remember there was someone called Jane Hood we considered at one time - canât temember the name of her organisation but it was around developmental neuro psychology and she seemed to cover quite a broad spectrum - I think she was in the outer south west London area - I know she was accessible from where we are - I had emailed and got some information but never took it further

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safia March 8, 2019 16:12

DevNeuro or something I think?

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Paddingtonmum March 8, 2019 19:22

Thanks Donatella and Sofia. I will check out jane Hood. I am constantly reminding them ADâs behaviour is anxiety based however she is so rude and defiant it is hard for them to see past this. She can pick on teachers and tbh I have never experienced rudeness like it either.... it really is something else. Lots of attachment friendly stuff doesnât work with her. Unfortunately I can see that school will run out of patience at some point...they have had several attempts to get me to take her somewhere else over the last few years, usually dealt with by me mentioning SEN and discrimination. Of course AD thinks thereâs nothing wrong with her and itâs everyone else! She denies sheâs worried or anxious....doesnât like me wondering aloud...so itâs all really tricky to manage! How did you manage to get your daughter to recognise anxiety Donatella?

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safia March 8, 2019 19:37

Also thereâs somewhere in central London near GOSH - if you google multidisciplinary assessments it might come up

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Paddingtonmum March 8, 2019 19:51

Thanks Sofia....have found it online. I will make enquires next week x

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Donatella March 8, 2019 20:01

With our daughter we worked on her physical symptoms and then linked them to how she was feeling at certain times. So she was able to recognise that certain lessons made her head or tummy hurt for example so - we were working with a lifestory therapist who was also an NLP practitioner at the time - we helped her to try and recognise that her anxiety was starting and giving her strategies to de-escalate rather than to allow it to ramp up. Anxiety looked like anger but once she realised what it was she was able to say âIâm scared, worried, anxious â and whoever was with her could take her out of lessons if necessary, talk her through a task - often she was anxious because sheâd not understood something, she has an exit card but we also drew up a whole series of small physical things she does when anxious. Small things - a look, a head tilt, appearing to not listen, muttering, mumbling, scratching herself - there are lots of small seemingly insignificant things which are actually quite significant when put together! I would also say that PMT was a biggie - awful mood swings so the contraceptive pill has really helped to regulate her moods x

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Leo2 March 8, 2019 20:27

Family Futures do a comprehensive assessment - which includes a file search, sensory OT assessment, Paediatrician, Ed Psych assessment and various other child and family assessments all then pulled together into one report. Well worth it!

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chocolatedog March 8, 2019 20:37

I've been reading an interesting article today about FASD often being misdiagnosed as Autism/ADHD etc. At one point in the article it said something along the lines of, if your child has a 'laundry list' of diagnoses, the chances are, it could well be FASD as alcohol affects the whole body and brain in so many different ways. FASD includes impulsivity, social problems, mood and emotional dysregulation, rigid thinking, aggression, depression, academic problems, sensory issues etc etc It also mentioned psychologists and psychiatrists often diagnose ASD or ADHD first as they assess using ADOS and FASD children can present in nearly identical ways

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Larsti March 8, 2019 20:55

Chocolatedog...can you post the details of the article please. I for one would love to read it! Paddingtonmum you could also investigate the Maudsley https://www.national.slam.nhs.uk/services/camhs/camhs-adoptionfostering/ We had to self fund in the end as CCG said no twice. SW assessing for ASF said no because 'health said he doesn't need it'. She was very obstructive. (We asked for a different SW the next time we applied for ASF) Anyway it was worth every penny. IMHO its all about accessing services. I agree with chocolate dog's article that maybe ADHD or ASD (Maudsley diagnosed both) could really be FASD (our son already had dx of partial FAS) but ASD and ADHD are understood better.....in education I mean. Seems ironic for your paed to say your DD is too complex to diagnose!! That's what specialists are for. Has your DD had life story work?

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Johanna March 8, 2019 22:42

The Ed Psych report was a godsend for us. We believe our youngest to have PDA and can so relate to the bad parenting/ naughty child labels. It is the highest level of anxiety. Working with this in the forefront of our minds has helped a lot. She has many good points and is now very loving to us which was not always the case. She is 18 now. Johanna p

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Paddingtonmum March 9, 2019 08:49

Dear all. Thank you so much for all your suggestions....that gives me something to get my teeth into. Thanks for that Donatella - I will see if we can apply any of this to AD. Sheâs pretty disruptive in lessons, and wonât leave unless sheâs storming off...attempts to get her to leave usually end up in her running off. She wouldnât leave quietly of her own accord unless she could take a friend. In the past sheâs had a bit of a reputation of getting out of class and then being somewhere she shouldnât, up to something she shouldnât be doing. Sheâs quite tricky to read, and doesnât like people looking at her...makes her angry (anxious). I will try out the physical symptoms and see where we get. Yes periods are hell....!! Larsti....some life story work attempted a few years ago...but had to be stopped as AD couldnât cope.... Yes I am pretty confused about FASD and overlap with adhd and ASD!! Bestie wishes

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chocolatedog March 9, 2019 20:03

Clinical Implications of a Link Between Fetal Alcohol Spectrum Disorders (FASD) and Autism or Aspergerâs Disorder â A Neurodevelopmental Frame for Helping Understanding and Management By Kieran D. OâMalley, Susan D. Rich

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Larsti March 9, 2019 21:24

Thanks chocolate dog x

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Pear Tree March 9, 2019 21:57

Dr jane hood (private and does some Nhs?) comes to mind as does dr Gillian Baird (Nhs) These are people who look at complex trauma impacted children but also consider the things like sensory impairment/ ASD/ adhd etc With my AD she has a zero score for empathy. Extremely resistant to any therapy. The only thing sheâs found of help was equine therapy. Sensory things did help as the snuck under her extensive radar. Anyway go for a complete assessment and these two individuals are well recommended.

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clr1 March 9, 2019 22:24

Your AD sounds very similar to mine (now aged 14). ADHD symptoms, attachment difficulties, sensory processing challenges, some learning difficulties, and very very anxious which manifests itself as anger... I think that FASD and ASD are all possibilities for her too but I haven't pursued diagnoses for these. A privately paid Ed Psych report was sufficient to secure sufficient funding from the Local Authority for my AD to go to a small specialist school. It hasn't been plain sailing, but getting her out of mainstream education has greatly helped with reducing her anxiety. ADHD medication for reducing her impulsivity (a bit) also helps. My experience has been that it doesn't really matter what diagnosis my AD has, as long as it secures the support she needs, and I do think that different professionals can give wildly different views.

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clr1 March 9, 2019 22:26

I should have said, the Ed Psych that I used was Sharon Lloyd (Learning Insights ltd) who has a good understanding of adoption

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