Crohn's and PDA/High functioning autism

[lucy23]

I was diagnosed with Crohn's over six years ago, and have been on Remicade for the past five years. While Remicade has changed my life in terms of managing my symptoms, I started researching helminthic therapy as an alternative to a lifetime of medication. I was surprised to read that helminthic therapy is used to treat autism as well, and it got me thinking and researching...

I have struggled with anxiety and depression for as long as I can remember, certainly before my diagnosis. I struggle to establish relationships and friendships beyond a superficial level, and become extremely anxious in every day situations and circumstances. I often feel like people are trying to tell me what to do, but can't understand what they want. I have a persistent feeling that everything I do is wrong, and often retreat into myself. I make people feel uncomfortable and have difficulty making small talk, even with my own family. Outwardly and superficially, I am socially capable; yet this is a product of careful study and unconscious mimicry of "normal" behavior. As a result, my friendships are short and my family relationships are strained.

Today, I found an article on Pathological Demand Avoidance Syndrome (PDA), and it really read like a page out of my life. PDA is increasingly being recognized as part of the autism spectrum, although it remains on the fringes. I can't post links because I am a new user, but if you google PDA Autism pages will show up.

I've read some anecdotal stuff linking autism and Crohn's, and a NYTimes article: An Immune Disorder at the Root of Autism, by MOISES VELASQUEZ-MANOFF.

It seems that people with immune disorders report a high rate of anxiety and stress. What I'm wondering is if the PDA diagnosis rings true for anyone else here.

 

[happy]

Welcome to the forum lucy23.
I am not familiar with PDA, but I have family members who struggle with anxiety and managing stress. I try to remind them that they are doing the best that they can under difficult circumstances and to not be so hard on themselves. Lots of time doing a form of meditation that they enjoy seems to help them.

 

[ellie]

Hi Lucy
There was a tv doco here a few days ago talking about the gut micro biome/ antibiotic use, and an increased incidence of autism..
The lad who was being studied seemed to improve somewhat with probiotics.. Possibly as a result of altering his gut flora. Certainly my CD has improved since taking daily probiotics
There's another thread on the forum talking about "sugars" as a vehicle for enhancing treatment delivery for IBD.
Sorry this isn't more coherent/unravelled, but I haven't figured out yet how to connect the dots -- but I suspect there ARE some dots to join up!!
Just throwing a few thoughts into the melting pot..
Ideas welcome!

HD

 

[Cat-a-Tonic]

Hi Lucy23 and welcome to the forum. I too struggle with a lot of the issues you mention - I am socially challenged, I tend to withdraw into myself, I'm anxious and a worrier, I really like routine and don't cope well with change, etc. (And of course I have bowel issues too - I'm unofficially diagnosed with IBD.) I've thought for awhile that I might have something like Asperger's, although as of yet I haven't been brave enough to ask my doctor to be tested for it. I did take a test online, and while I understand that online tests are not exactly the most scientific or accurate, my result did say that I most likely have Asperger's. I'm kind of terrified of being officially tested for it, though. If I do have Asperger's, that means there's something wrong with my brain. Even scarier though - if I don't have Asperger's, what does that mean? I'm just a crazy loner jerk who sucks at conversation? I don't know, I should just call my doctor and set up an appointment and get it over with, but the thought of it is overwhelming.

Anyway, yes, you are not alone, I'm in a similar situation. And yes, bowel/digestive issues can often occur together. I have a cousin who is autistic and he has a lot of food allergies - he's on a no wheat and no dairy diet (I think he has other food allergies too but I can't remember what they are).

I'm going to google PDA now as I haven't heard of it before!

 

[tots]

Having to deal with IBD is enough to give anyone of us depression and anxiety. Esp in social situatiuons. You never know when its going to "pop" up and its not something you talk about easily with people your not close with!! Dont feel alone- most of us at one time or another are there.


lauren

 

[lucy23]

I'm kind of terrified of being officially tested for it, though. If I do have Asperger's, that means there's something wrong with my brain. Even scarier though - if I don't have Asperger's, what does that mean? I'm just a crazy loner jerk who sucks at conversation? I don't know, I should just call my doctor and set up an appointment and get it over with, but the thought of it is overwhelming.

I can very much relate to you on that front--not only is the idea of the diagnosis being correct or incorrect scary (such finality! And then what?), but my current therapist thinks it's a total joke. She hasn't heard of PDA, and thinks that self-diagnosis is fatalistic... granted, she has a point, but it's still frustrating. I've been checking out this web community lately, wrongplanet.net. It's a community for people on the spectrum, and there's a lot of interesting information, regardless of whether you have an official diagnosis. It also led me to this really cool book by John Elder Robison, Be Different, which weaves together memoir and coping methods for people with social differences. No matter what my therapist says, I identify with and relate well with people on the spectrum. And that's what counts, right?

 

[jemmm]

Hi Lucy,

I have Crohn's Disease, I also have a son (5 years old), with a diagnosis of classic autism. I am doing Post Graduate research into Autism, when I'm well enough ;-)

There is increasing evidence of an indirect link between autism and inflammatory bowel disease.

There was a recent report in the NY Times - that shows good, strong, recent research, that certain kinds of autism could be described as an inflammatory disease. It specifically mentions Crohn's and the use of helminthic therapy, for both conditions. Google: "An Immune Disorder at the Root of Autism By MOISES VELASQUEZ-MANOFF" - it's the first result

Search on "autismtso" - is an interesting account of a parents use of helminthic therapy to treat his autistic son.

I think we need to be cautious. Both conditions are still poorly understood - I was speaking to a friend of mine recently, who is a doctor. He said that he thought it likely that Crohn's would be found to be a cluster of different conidtions, with different causes. Autism is already considered a spectrum condition - researchers frequently now refer to "Autisms". I think we need to be particularly careful with autism - the idea that autism is linked to various inflammatory/autoimmune disorders is not a new one, the idea that autism it is specifically an inflammatory/autoimmune disorder itself, is novel, under-researched and needs a lot more science behind it. That's not say it isn't a really interesting and an extremely promising avenue - I for one will be doing a lot more reading around this idea.

In terms of your "online questionnaires" and self-diagnosis. I don't know what you did; however, Dr Simon Baron-Cohen, has devised three simple tests, that are considered therapeutically indicative, if not diagnostically valid tests. Google "Autism Quotient", "Empathizing Quotient" and "Systemizing Quotient". Again a note of caution - they'll give you a good idea of where you might sit in terms of the autism spectrum - but they are not and were never meant to be diagnostic tools.

As far as getting an official diagnosis is concerned, I think I'd sit and ask yourself what you think you might gain from one - I'm in the UK and things are quite different here, but a diagnosis might be a route to support and services, then again it might not. It might give you clarity and some peace, it might not ;-) One thing I would hold to the fore if you do travel this route, is advice we were given when our son was diagnosed - he is still the same little boy we had before the diagnosis - nothing has changed.

Sorry, I feel I've weaved around a few different issues there - I hope I've made some sense! Oh and as a point of interest, I'm of the scale when it comes to the AQ, but people (professionals working in autism) are constantly surprised at my score. It is possible to "learn" coping mechanisms in social situations (I have as it appears have you), and there is much evidence to suggest this occurs more often in females - my five year old son has a twin sister - she is not autistic, but boy does she struggle sometimes with social situations - she recently asked me "Why do people smile when you smile at them"! We "coach" her before new social situations.

I'm ranting now - if there's anything above I might be able to clarify, then please shout.
J.

 

[rswartzjr]

I have Asperger's syndrome and crohn 's and i also have a 2 year old daughter with autism. I do believe in the mind-gut connection

 

[Spooky1]

I read a book on the autistic/aspbergers issue. i read my life, i was so shocked! it explained so much to me, but i don't change from being me. its also a lonely place to be. i get so lonely i crave company, but then can't handle it. but with crohns being severe i don't have much energy anyway. I must admit, i don't like being like this, and i would most certainly change if i could.

 

[t-bone]

Hope all is well with folks who posted in this thread almost ten years ago

... can't believe this is the only thread that can be found by searching autism here on this forum
(other than my mess of a thread on 2020 and the challenges it has brought to some of us )


So, I'll bump this one as i attempt to get my thought together to broach this subject for a new look in 2021 ( and beyond )

 

[Spooky1]

Hey, t-bone, i was just watching documentaries on youtube about autism and aspergers. Made me a little sad in a way. what i would give just to change and be able to be more social? However, that can be difficult with the Crohns disease. Something i had forgotten was the high anxiety that goes with aspergers, and PDA and i was reminded about why i feel the way i do. As i say, i wish i could do something about it all. I sincerely don't have a good medical team.

 

[t-bone]

Thanks for your post

i struggle with a lot of the same, Diane

one of the hardest part is the variability
... one moment fine
... next not so much

the hardest part is not being able to get the words out

 

[Catherine]

My 24 year old daughter was dx with UC last year and she is high functioning aspergers.

Her sisters has crohn's.