I believe that people diagnosed or referred by Drs following FND symptoms should also be sent for screening if "rule in" signs present (if any avail to Drs) as there is a treatment pathway and it hopefully shouldn't take two years to find out.
This grates on me as a friend of mine was beaming about support given to her and her daughter (two hour session) to help with her grandson with Autism. I was truly happy for her but jealous at the same time. My friends ignorance or willing to listen/cuts convo dead re my sons condition also upsets me, so I have decided not to tell them of this latest turn of events.
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Yes, I was told by the psychologist I was seeing for my FND that he thought I was a bit autistic. He also said my condition isn't psychological and I should find a good neurologist. So I saw Prof Mark Edwards and he said many of his FND patients have autistic traits. I honestly don't know why more isn't being made of this by FND specialists, instead of tired old Freudian "explanations". We obviously just have different brains, and there is good and bad in that - I was found to be in the top one percent of the population for IQ, for example. But I've always been poorly coordinated (terrible at sports) and prone to "spacing out" (actually I'm just processing). My FND seems to be an extreme version of my normal reality, with a movement disorder and what they call "dissociative seizures", which I experience as extreme brain fatigue. I'm not traumatized/trying to escape, etc - I'm just really, really tired. It's very frustrating.
My son experienced "drop attack" seizures not really dissociative, ie disconnected. Although that said, some may have been. I just used to hear a thud and then run up to see he is okay. Last fall due to dizziness we believe.
I read that article a while ago and am glad to have the opportunity to read it again. Unfortunately your friend's response re your son's condition is all too familiar to me but the more people know about the FND/autism overlap (and the migraine/autism overlap) the less that will happen - I hope. Most people I know with autism don't want it to be in DSM, whether or not they have FND symptoms with it.
It is disappointing that there doesn't seem to be any patient representation re autism/FND at the upcoming FND Society meeting (although I could be wrong) but I hope all the transcripts from that meeting will be circulated in the FND groups, including this one.
From a personal perspective, my GP's son has autism so she was able to understand MdDS as a central sensory processing condition very quickly and can explain the symptoms (and what can cause them to fluctuate) to me, which makes a refreshing change since people with rare conditions often face the added burden of being the explainers in medical settings.
I hope someone gets to the bottom of what is causing your son to fall - and soon.
Thanks I remember you mentioning you had autism and shared the sub-stack writers link (receive the weekly email).I agree re addressing the link at FND Society Conference, did you find out who the funders were?
The Neuro Psychiatrist I spoke to last week (more of a courtesy call, so my expectations of what help we would be receiving weren't met with disappointment - ie no funding/commission available for FND), was impressed with my knowledge and understanding and interventions I have tried etc).
The last fall was to do with dizziness and headache and rushing out of bed. Previously drop attacks, all FND related I believe, underlying cause suspected suppressed anxiety (ie emotion).
Thanks and I have to say that I have not officially been diagnosed with autism but it does help to have a GP who understands it since MdDS is also a sensory processing condition and Kate's posts resonate with me. No, I have no idea who the funders are or why the organisers think it's a good idea to have the patient panel chaired by men (including FND Portal).
Hmmm, there is a pathway for people with FND so there must be some provision available and the neuro psych should know about it. Neuro psychiatrists in the UK are 'self made' so we don't know how much training they've had in either and the two I've met so far have been worse than useless. But it is good that you got validation from the one you spoke to.
I still think your son needs assessment at a reputable balance centre and a referral to a headache specialist.
Thats crazy as FND is documented to affect more woman than men, is it 3:1?I know there are Specialist Centres, Bristol, London etc, are they not pathways, maybe its down to a postcode lottery 😐
The GP didn't do anything except write to the Neurologist for fMRI (after I insisted), who I think has signed my son off and the Neuro Pychiatrist was writing to GP re autism spectrum and has also signed him off and said fMRI as only used in research, which I don't think is technically correct.
Yes, a lot of fMRI studies are only done for research purposes and there are limitations to them since different centres ask people to do different tasks during them so the results can get skewed. If you get fobbed off or your son gets signed off/discharged then I'd be inclined to contact Dawn at FND Hope UK for advice. She is an earth angel and very dedicated.
I am so grateful to you for keeping the conversations about autism going here since I think it is a much more appropriate diagnosis for a lot of people than FND because FND is all about 'maladaptive' behaviour whereas autism and autistic traits are held in a much more positive light now that people understand why some children have meltdowns when there is too much sensory stimulation going on (or not enough, in some cases). Plus there is now a good amount of creative literature from people with autism and/or the parents of people with autism which is highly empowering. Patience Agbabi (poet and friend) has done wonderful work in this respect and another friend runs autism friendly dance events and is planning other cultural events featuring neuro divergent people. Also thinking about autism brings genetics to the forefront of people's minds (as it does re migraine and autism) and we need more of that, across the board. Whenever medical students ask me which field to choose I nearly always say genetics
There was something I read earlier (can't recall what exactly) but do recall the article acknowledged a connection between FND and autism, like it wasn't unusual.
The more I think about it, the more I am as mad as hell (excuse the phrase) of them all wiping their hands of him and possible passing the buck. What has this world and our NHS service become.
I was sent the budget highlights by my financial adviser and the first thing mentioned was cut into National Insurance contributions, does this not contribute a lot to our Health Services and vital services... yet to cut their budgets, madness.
I hear you and your son and you both need much better care to improve your quality of life. Parts of the UK Govt are just about vote catching, not health.
Hi, I was diagnosed with FND first then sought a private autism dianosis (after both my children were diagnosed through the NHS) because I noticed that all my FND symptoms are triggered by sensory or cognitive overload. It was worth every penny as I got a full sensory and cognitive assessment and discovered I have exceptional strengths I was not aware of (due to living my whole life in a constant state of overwhelm) and a significant processsing delay and my sensory processing is extremely hyperreactive in all areas.
Thankfully my FND specialists have also embraced the link between my neurodivergence and my FND and together we have found ways to adjust my lifestyle to help me manage my most debilitating symptoms better.
I have recently started to look into the link between hypermobile joints, neurodivergence and nervous system malfunctions. I have hypermobile joints (never diagnosed but doctors told my parents I should wear supports on my joints as I expereinced so many problems and pain with my joints as a child) . Both my children have very hypermobile joints and they are now starting to show early signs of FND symptoms, so I am monitoring it closely and looking for a good specialist to take the to.
Dr Jessica Eccles is doing some great research here in the UK about the lik between hypermobility and chronic pain, CFS, neurodivergence and anxiety. I think that more will follow (I hope).
One of my children also has tourette's syndrome and I notice that there is a lot of overlap in the triggers for his tic attacks and the triggers for my FND motor symptoms.
From the reserach I have been doing it seems that science is in its infancy in understanding the complexity of the brain and the nervous system and it is leading a lot of specialists to have to reframe everything they thought they knew about neurodivergency. But it is sadly going to take years for that to filter down to day to day practice.
Can I ask, who are your FND Specialists and where are they located.
Also any links to Dr Eccles rrsearch, woukd be interesting to read.
A request has been sent to our GP to be referred for screening for autism, I can definitely see some traits and as far as the wider socialisation, myself and my son are miles apart. My eldest calls me a "social butterfly."
I’m autistic and definitely feel that my FND symptoms are an extension (albeit an extreme one) of my hypersensitives, and anxiety. I don’t feel that having both diagnoses has helped me get any better healthcare though. Infact I felt the doctor at the Rosa Burden centre just dismissed me and told me to go back to my GP and see if I could fix my anxiety.
I do find it shines more light on understanding my nervous system I think.
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