FND and autism

[Van604]

Has anyone here been diagnosed with both Asperger's/ASD and FND/Conversion Disorder? I am autistic and have FND and my specialist told me he sees many FND patients who are also autistic. If so, have you found any treatments that actually work? The treatments for FND seem to be good for neurotypicals, but useless or even harmful for the neurodiverse.

[Jellofabulous]

While I have not been officially diagnosed with ASD, I have two daughters who have been, and my psychologist strongly suspects I am on the spectrum as well. She said that about 40% of her clientele with FND also have ASD and I’ve heard from other providers that they think they’re linked. I’ve taken a course called FNDCourage and one of the key principles is to live life according to YOUR nervous system and I’ve found it incredibly helpful.

[Van604 in reply to Jellofabulous]

Thanks. I'm hearing about the link more and more, informally, and can't understand why no studies have been done, or why few doctors (except Mark Edwards) even mention it. It seems to be a weird blind spot in the medical field, but allied professions, like psychology, say it's obvious!

[WorriedPappa]

My Daughter has FND and is also Autistic. In terms of 'treatment' the NHS in the UK are appalling with FND and no treatment has been offered. She basically lives day to day with differing symptoms. She is a fighter and is currently doing her first year at university. Think she is just of the opinion she will have good days and bad. If anyone knows of any treatment that may help we would be very interested. I know there are meant to be FND clinics but there are not many and ive heard the waiting list is years. The NHS is great for certain things but certainly not for FND.

[Van604 in reply to WorriedPappa]

I think it would be worth you asking your GP to refer her to Prof Mark Edwards at St George's in London. I got to see him within 8 months (would have been sooner but they messed up my appointment), and that was earlier this year during lockdown. It's a national hospital so they see patients from all over England and even provide transport free-of-charge if you need it. They sent a taxi for me. Prof Edwards is fantastic - very kind and willing to listen, and very thorough. He also told me he sees a lot of FND patients with autism. Good luck!

[Bxstar in reply to WorriedPappa]

hello. I have FND aim UK and there is treatment. VERY a hard to access

[Thetealharp]

I am autistic and medically complicated and may have FND (waiting for my neuro appt). Maybe have a look into ways to support the autism things like sensory integration therapy, autism specific services might help if other routes aren't working.

[Van604 in reply to Thetealharp]

Thanks. Yes, I think the autism therapy might work better for me. My previous doctor kept pushing me to do even more when I have sensory problems, which just made me worse.

[Willothewisp81]

I recieved my FND diagnosis shortly before my autism diagnosis and when I was referred to the neuropychology team (this was my request as I have experienced truama) they explained that the majority of women they see with FND are either diagnosed or suspected to be autistic. The pschologist who assessed me said she thinks it is crazy that there has been no research done into the link as she sees it so frequently.

I found the neuropschology really helped me as they were the first service I have accessed that had a proper understanding of autism and they helped me see how much my brain is processing and managing even doing simple things like going to the shop. This has helped me to begin to cut myself some slack and start to learn to pace myself based on what my body and mind can handle instead of what a neurotypical person does.

[Van604 in reply to Willothewisp81]

Thanks. I'm trying to push the agenda as much as possible, by bringing it up on boards/in conferences etc, because I agree it's crazy no research has been done. Especially when it could be the key to better treatment when current standard treatments for FND have such dismal effectiveness for us. It sounds like autism-based therapy worked better for you.

[Willothewisp81 in reply to Van604]

That's great that you are trying to draw peoples attention to it!

I think as understanding of neurodivergency becomes more about understanding that it's about different brain wiring and not deficiencies then the research will start to happen.

I have come across a lot of people within the autism community who can see that there is a link to a wide range of chronic health conditions and neurodivergency because our entire nervous system is wired differently to neurotypicals and the strain it is put under by trying to fit into/ keep up with neurotypical life is enormous.

The neuroscience is starting to catch up with what people with lived experience of neurodivergency have been saying so hopefully the professionals will start to connect the dots too soon.

[Van604 in reply to Willothewisp81]

I agree. I'm 60 and it was only told to me a couple of years ago, by a psychologist who specializes in autism, that he thinks I'm autistic. I've had a pretty successful life - I have a high IQ, went to university and had a good career on two continents - although it was a struggle dealing with the social side of life. So when he told me, I just thought of it as an explanation of why I'm like this and it came as a relief. I don't feel deficient at all. In fact, I'm really interested in evolutionary psychiatry (I've read a couple of books about it) and there's good reason to believe that there is an evolutionary advantage to having a certain percentage of the population wired differently. There's always a trade-off though, so susceptibility to conditions like FND could be it.

[Van604 in reply to Willothewisp81]

Hooray! Prof Edwards' team is doing a study on the link between autistic traits and FND: SCREENING OF AUTISTIC TRAITS IN PEOPLE WITH FUNCTIONAL NEUROLOGICAL DISORDERS

The following validated questionnaire is a preliminary screening of autistic traits in adults. Completion will take you approximately 20 minutes. There are no good or bad responses, and all the data will be managed anonymously. We want to thank you in advance for the time taken in answering the questions. This will help us design further studies to increase our understanding of FND.

Please complete the survey here: forms.office.com/pages/resp...

[Willothewisp81 in reply to Van604]

Wow, that's really interesting. Thank you for the link!

[Hickorydock]

I'm autistic diagnosed when I was in my 20s should of been sooner but not recognised. My FND causes memory probs so I'm not much use, I'm afraid but never put connection between two. I generally don't say I am but as son diagnosed with autism I'm now more open.

[Mattie21]

Heya, you mentioned you bring it up on boards and conferences about comorbid autism and fnd, but what kinds of things do they say or come back with, I'm curious one time I tried to include an autism questionnaire as a possible risk indicator of those getting delirium after surgery. That didn't go down too well. I think the question was why autism and not other neuropsychiatric disorders like bipolar, adhd, schizophrenia, ocd. I think they thought because of my autism I was being quite rigid in my thinking. I think you could pick from a range of psychiatric conditions (lots of people get diagnosed with multiple). I think autism is a good name to be labelled with out of the blue as the strategies are genuinely helpful and there is autism pride/autism strengths to discover without it all being what you can't do. Where fnd is all about it being your fault you don't believe you will get better kind of rhetoric... I also brought up the high rate of parkinsons in autism in my neurological assessment where I was diagnosed with fnd. They wrote in my report I was being rigid in my thinking because of autism (as id worked a lot with parkinsonian patients previously)....its funny but not funny how rigid doctors themselves can get about diagnoses.

[Van604 in reply to Mattie21]

I've just started, but quite a lot of reaction so far. I brought it up at the US FND Hope conference a couple of weeks ago and, to be honest, it was a bit of a hard sell, even with the neurologists, who seemed to want to just make everything about trauma and "psychological factors". One doctor even argued with me about the meaning of the word "psychological" because I said my so-called "seizures" (which I think are probably autistic meltdowns) always result from physical triggers, like cold, heat, hunger, thirst, bright lights or lack of sleep. He said those things were psychological! But quite a few patients wrote in the chat that they are also autistic, so some good feedback. I agree about the rhetoric around FND - "if you don't believe, you won't get better. Sounds more like a cult! I know so many people who did believe (mostly out of desperation), didn't get better and are now questioning it. Sounds logical to me. In trying to find other links/explanations, you don't sound rigid to me - it's a lot more open-minded than sticking to the same old 100+ year old Freudian script about converting emotions and secondary gain! I'm just going to keep on plugging away, trying to get someone who does research to take it on. I don't even care if it then becomes their idea - as long as it helps us.

[Mattie21 in reply to Van604]

Oh great job, good on you for speaking up/putting it on the radar. Oh cheers thanks for for saying I'm not being rigid about that! yeah have you read the autistic brain by temple Grandin? She makes some great points that researching/imaging peoples brains would work better if they collected participants with the same SYMPTOMS and not diagnosis (as people within diagnoses are quite heterogeneous in presentation which is confirmed with medical imaging). Many health professionals who work for many years without changing fields have trouble seeing this sometimes. They come with a perhaps narrow field of expertise. I think as well sometimes as patients it can feel like we are a pile of land and doctors are like colonists each wanting to mark out their own territory/research space without realising they've plonked their flags on the same patch of land I.e. its in their interest as top of their field to keep diagnoses (and treatments) as separate as possible even if there is evidence to suggest otherwise.

Its interesting that they were saying interoception issues are only psychological/trauma......

[Van604 in reply to Mattie21]

No, I haven't read that book but I'm going to get it. I saw that movie about her and was really impressed. I completely agree about doctors' narrow viewpoint, but there's a glimmer of hope - I found an article on the Movement Disorders Society website about FND and it said they are planning on dividing patients into subtypes so they can taylor treatment better.I like your analogy about the plot of land - I always think of that old story about the blind men and the elephant. Depending on which part they're feeling, they think it's different things!

[Van604 in reply to Mattie21]

Hooray! Prof Edwards' team is doing a research study on autism traits and FND:SCREENING OF AUTISTIC TRAITS IN PEOPLE WITH FUNCTIONAL NEUROLOGICAL DISORDERS

The following validated questionnaire is a preliminary screening of autistic traits in adults. Completion will take you approximately 20 minutes. There are no good or bad responses, and all the data will be managed anonymously. We want to thank you in advance for the time taken in answering the questions. This will help us design further studies to increase our understanding of FND.

Please complete the survey here: forms.office.com/pages/resp...

[Mattie21 in reply to Van604]

That's unbelievably exciting. Thanks so much for sharing the news and the link. Theres an error on question 50 I think it was. Well done to you for your advocacy in this space/shining a light. It would be lovely to think others could benefit from the goldmine of knowledge in field of autism on how to make the most of strengths/avoid triggers and love thyself.

[Van604 in reply to Mattie21]

Yes, I noticed that error too - maybe the following question should be did you notice the error! Yes, I'm pretty motivated to get this investigated and recognized. I know how much harm traditional treatment did to me and want to help others avoid it.

[fredsmummy]

My son has ASD and adhd and I have adhd and possible ASD. Fascinating

[Vero67]

I am French. My 18 year old daughter also suffers from FND. In France few doctors know about FND. There is a psychiatrist in the east of France who has written a book (Dr Hingray). We are waiting for the assessment of the autistic resource centre

[Van604 in reply to Vero67]

Hi Vero. Have you heard of the FND Society? They are doctors in FND and they do webinars about it. For a small fee you can watch previous webinars. There was one with doctors from the Salpetriere in Paris - they seem to have good results.

[Libertyedwardslovely]

I only have autism I don't have FND I hope I don't develop it

[SwimminLemon]

I’m actually diagnosed with catatonia, which has been linked to autism. But catatonia and conversion disorder/FND seem so similar I don’t see why they are regarded separately. I cannot find much research even connecting the two.