MS and Autism do you see the similarities?

[supermum_ms]

Hey Guys and dolls,

Some of you will remember that ASD (Autistic spectrum disorder) is more common than NT (neuro typical) in our family so from my perspective i feel i've always understood Autism. From the very begining of my MS journey though, i've been struck with new insight into what it could actually feel like to have Autism. Sound strange but bare with me here, my brain has a way of spotting patterns and asking a plethera of questions, lol often they go unanswered but still these questions keep popping into my thoughts.

One of the things i do when i'm working with an Autistic child, is to observe the child as well as their environment, I do that to try and understand their why factor. It would be erronous to assume i know the why without knowing the childs issues and taking in everything the child does, it doesn't matter how much you know or think you know, the child is your teacher in understanding their why factor. I discovered many moons ago, that people often interpret an Autistic childs behavior from their own NT perspective, they also focus on the end result and not the preceeding factors. They dont really understand little Jonny, what he's dealing with but you can't see etc they answer all the why questions with 'thats Autism'.

Now one of the hidden issues of Autism is sensory, you can't feel it or see it, you may know that fact but with out experiencing sensory problems you often lack true understanding of what that means. People with MS understand, (do you now get where i'm going) imagine you have little to no life experience or even the communication skills so you cant tell anyone and truth be told you may not even know that what you feel is not normal, because it is to you. Just imagine being a little kid trying to make sense of it, its hard enough for you with all your life experiences to deal with it, sometimes it hurts, sometimes it is so distracting, sometimes it distresses you, sometimes you just can't cope.

If you didn't know before, today you now have a greater understanding of what its like to be Autistic but there are many more similarities, have I got you thinking? can you think of any other similarities, i can?

Cheers.........JJ

[Isilhwen]

I experience both autism spectrum disorder (ASD)and multiple sclerosis (MS).  Both have influenced my life, though thinking broadly, not only in a negative fashion.  As far as a recognized co-morbidity between the two, there is not one recognized.  There is however shared biological activity in the form of neuro-inflammation and neuroimmune activity (wikipedia).  As far as the etiology in ASD, in my experience the genetic tie is undeniable.  Perhaps some maternal factors prior to birth may "turn on" that genetic link.  I do not believe, however, that the maternal prenatal factors in and of themselves could claim responsibility.  Sorry about your uncles suffering.

[GuitarRox]

hey, want to welcome you. I'd like to hear more of what you have to say and hope you share about both your ASD and MS experiences.

[KenS61]

I am a 56 year old who has suffered from Autism my whole life and cared for my grandfather with MS until it became more than one person could handle as he became bed ridden and had to be turned every hour to prevent bed sores. It tore my heart out to put him in a medical facility but there was no other choice.
The common problems I noticed appear to be the comorbidities of fibro myalgia, gastrointestinal problems (Irritable Bowel), trigeminal neuralgia, and what they call the MS hug. He never complained about any sensory dysfunctions but I suspect he had them.
They are both horrible to experience and most "Neuro Typicals" (I hate that term) can't wrap their heads around what you are going through or just don't care. I hope this information helps.

[GuitarRox]

Interesting question and thanks to super_mum for posing it even if it has been awhile.  Ken, appreciate you perspective caring for someone with MS and seeing the similarities.  You have a unique perspective.  I'm interested in caregiver tips and a new thread about this would be very welcome!

[Tashenoir]

Don't know if you can relate, I actually feel I have rants, fits of anger, whatever you'd like to call them.  I have MS, and have been on all kinds of MS drugs.  I am off all of them now, but my symptoms are coming back.  I heard of a new multivitamin designed for children with autism, it has been successful in helping with overall well being.  I am going to try it and see if it helps clarity, and fatigue from MS.  I think all these conditions have similarities and also effect us all differently.  Some of our symptoms are the same, but there's no set symptoms, just vast symptoms that add up to a diagnosis.

Thanks for your insight,
Steph

[Ricobord]

I so greatly appreciate your insights into the world of an autistic child, and your empathy in trying to understand things from their perspective and experience.  This is a hallmark of emotional intelligence!

Most of us only develop meaningful compassion after we ourselves have experienced something.  While I spent several days believing I had MS, the emotional rollercoaster was incredible. Even contemplating how significantly it would affect my and my family's future was almost overwhelming. I now have a whole new empathy for people who have just learned they have a life altering condition..

I do not have MS, but rather neurologic Lyme / Borrelia (acquired in Queensland, BTW), and continued to develop significant cognitive and neurological symptoms that were often hard to describe.  How can I explain the weird, spacey, disoriented, and detached feeling in my brain to someone who doesn't know what I am talking about.  But to another with the same experience, there is an immediate understanding and acknowledgement.

That's why these online communities are so great!  We are not all perfect and we do not all have the right answers, but it's very comforting to share experiences in such a forum.

[Mummy76]

HI JJ

Finally had a chance to read this post.  Very interesting.  A lot to think about.

[supermum_ms]

BTW the most IMPORTANT message I've ever got was from Dr Tony Attwood, one of his books is on Asperger Syndrome, and it totally explains the Rumble, Rage and Recovery stages of behavioral episodes or what teachers often call explosive tantrums. I always recommend getting your hands on anything written by him, he explains and also tells you what to do or not to do, something thats often missing is the practicle application. You may know its name but not what to do about it.

Our youngest will one day be earning his living in the world of science, thats been his passion since at the age of 2 he discovered the letters in the periodic table was the key lol its been an interesting journey with my two.

I still believe in brain plasticity, lol we have living proof!

Cheers.........JJ

[twopack]

Her book "Animals in Translation" had me glued to nearly every page.  I read it for the animal part but learned as much about autism.  She explains so much of both side by side.  I kept yelling to my husband, "Listen to this!!"  And he actually listened after the first few hits!  Half of the paragraphs are yellow highlight in my copy.  Sadly, I doubt I'll ever be able to review that small print again.

JJ, thanks for the reminder that some of the greatest challenges we face with our young children become their gifts of adulthood.  I'll have to be sure to share this with my own daughter.  She's the one battling her youngin' these days.  What a wonderful creation she's got in process ;-)

Perhaps there is hope that the weakness of MS can be flipped on it's head and become my strength?

Mary

[supermum_ms]

It was actually Temple Grandin who helped me understand our Daughter's sensory issues, yrs before she got the dx of Asperger's. DD too needed firm pressure though not to the point of needing her own cattle shoot/preasure machine in her bedroom. For DD a gentle touch was perceived as unpleasant, she is a hugger lol we all are but she would almost break your bones with her 'i'm really happy to see you hug'.

Funny but it was the dx of Asperger's in our youngest that started my journey of understanding, here we were looking at sx and behaviors he was suppose to have and mainly didn't but we were actually looking at all our daughters life long seperately dx issues all under the one name. So it was Temple Grandin's story that helped understand her better, though I do have to say Grandin's story is quite complex and unusual. And again it was her message of finding their passion that enabled us to focus on what SHE was capable of and not what she could do in comparrison to others.

DD's passion is decorating cakes, she is beyond good, she brings a wow factor to what she creates and she is paid very highly for her skill, the other week one of her creations sold for $600, i dont want to tell you what they charge for a wedding cake lol. Who would believe this child who started with a passion for clay could make edible works of art, all thanks to seeing Temple Grandin's story!

Here she would not be said to be an Aspie, HFA because of her classic (Autistic) early childhood. I did think she her self classed her self as HFA but maybe she doesn't anymore, its been a while since i've read or seen anything about her, lol i really am out of the loop.

Anyway Mary, thanks for reminding me of just how far our daughter has come, almost another life time ago.

Cheers.............JJ

  

[twopack]

Hey JJ, have you ever read any of Dr. Temple Grandin's stuff or seen the film based on her life?  She's great.  If not, I'll intrigue you with more info about her.  (hint: she's a PhD Aspie)

Mary

[supermum_ms]

Raz, your right! I was going to give you an article which is called something like how dr's think but since my computer hard drive got fried, i've lost everything and now can't find where i put my hard copy lol It basically explains that due to time factors, the majority of drs in the first 4-6 minutes of an appointment have already got a dx in their mind, they then look for supporting evidence. One of the main problems with this is that when they are wrong, they may not take notice of any evidence that points away form that initial thought. The article is in no way dr bashing or anything like that, it just puts things in perspective and helps you understand where dr's are coming from, it was worth reading.

As for 'all that goes with it' I thought I pretty much knew sensory inside out but didn't really know sensory until i experienced it, one was academic the other was personal, so yes i get what your saying there. Ha i wonder if they'd understand on a personal level, if we chucked a heap of fire ants down their back and tell them that they have to ignore it because thats simply MS!

I've actually considered 'interviewing' my next neurologist, not sure how that would go down but we all know its not in your best interest to see a neurologist that doesn't understand the unigue nature of MS.

Anyway cheers.........JJ

[RazCarver]

I have to confess I've been lurking on your post. lol. it has intrigue me, but I had to keep reading and re-reading to follow along. I see what you are saying and its interesting. Maybe because I’ve been in limboland so long my mind was picking up on something else you said and keep zoning in on it.

It’s the part you posted:
“One of the things i do when i'm working with an Autistic child, is to observe the child as well as their environment, I do that to try and understand their why factor. It would be erronous to assume i know the why without knowing the childs issues and taking in everything the child does, it doesn't matter how much you know or think you know, the child is your teacher in understanding their why factor. I discovered many moons ago, that people often interpret an Autistic childs behavior from their own NT perspective, they also focus on the end result and not the preceeding factors. They dont really understand little Jonny, what he's dealing with but you can't see etc they answer all the why questions with 'thats Autism'.”

I’ve always been the square peg that never quite fit in the round hole. ( I’ll try not to go off tangent so will not explain that ) but isn’t your paragraph there also a similarity with getting a diagnosis , whatever it may be, from a neurologist?

Doctors don’t observe us in our environment. They watch us walk a few feet across the exam room. Granted mine walks behind me to the check out window too. I know he is watching the way I walk because if I run onto the wall or stumble, he ups the time frame on my next appointment.

How can they know our ‘why factor’ when they don’t have time to hear but the most troubling symptoms? Neurologist answer our why factor from their perspective and focus on end results of tests. Not always on what we are dealing with day to day. I know it has to be that way but surely they could keep an open mind. maybe I'm the square peg and thier perception of MS is the round hole. maybe i'm not the only one with a perception problem.

Lastly, do they really understand what we are dealing with??? Medically yeah maybe, but maybe not all that goes with it. So the answer is “that’s MS”.

sorry but it just keep going round and round my head I had to post it.
Raz

[supermum_ms]

I've been looking at the research for ASD for over 20 years and MS for the last 2 and there just isn't anything on the ASD side that goes into the depth that MS does. MS has the information that is lacking in ASD, parents with ASD kids could be missing out on vital information that would help them to better understand their childs issues.

Little Jonny keeps taking his clothes off, parents often only know its due to his sensory issues but don't understand 'sensory' more than that its a part of Autism and that basically he just doesn't 'like' the way it feels. He constantly scratches the same spots on his body until his skin is raw, he doesn't have exma or allergies so he must 'like' the way scratching feels. or He is scratching when he's distressed not he's distressed because he cant stop the itch. I could give more examples but i know you'll get it because you've experienced it too. The way sensory issues are treated/managed in ASD is through behavioral training and sensory desensitisation techniques, the focus is not on the cause but their behavioral reactions.

I dont actually think being a 'storehouse of useless arcane crap' is a diagnosable disorder lol just spend a day with a group of gifted's or better yet a group of gifted Aspie's. My mother is known for her titbits of useless facts, she says useless because they dont connect to anything more than what they are, titbits. Being a storehouse of vast and varied information wouldn't necessarily be usual for ASD, they usually store topic specific informational facts of their passion/obsessional interest.

The 'avoidance' type social issue of ASD are often misunderstood, the social issues are not from fear as such but from experience and confusion of none verbal communications. Avoidance because NT people dont make a whole lot of sense, way too many hidden meanings, if the experience is confusing or distressful then you avoid it.

My brother a gifted Aspie is socially inept, knew that conversation required a two and fro but didn't realise you were suppose to be on the same topic lol he actually thought he had great communications/people skills but he had never noticed if the other person was interested in what he was saying or not, he assumed because he was interested, they were too. LOL he will say "i'm going to hang up now because if I dont you'll just keep on talking" he never learnt to play the social game, he probably didn't even know there was one!

Zoning out is an attentional thing, found in ASD, ADD, GIFTED, MS, CAPD etc etc the question is when did it start before or after MS? As for the memory of patterns of numbers/music thats quite normal for left brainers, numbers and music are stored around the same area of the brain so its not uncommon if your good at one to be good at both. Talent in anything is in part ability and practice, if you practice anything you train or wire your brain to recognise eliments to the point of automation, you dont have to think about what that sympol represents, you just know, in time with practive if you have a talent you can add to infinite levels.

I doubt there will ever be a study on this, i'm not entirely sure it is demyelination with ASD though i have been struck with the PPMS's lack of lesions and ASD and if its the same at all.

Cheers.............JJ

    

[Guitar_grrrl]

Interesting thread, JJ!

My sister calls me a "storehouse of useless arcane cr@p".  I tend to have an easy time with patterns of numbers (I'd probably be dangerous in 'Vegas), I memorize certain things quickly and easily (long music pieces), but I had a terrible time getting through 2nd term Chemistry in University.  The darndest stuff just stays in my noggin!  Sis swears I'm Aspie!  Socially, I'm not afraid to meet and talk with total strangers, but I have very few _true_ friends, and I remain close to them.  

Mary said, "Now isn't some of this a little like the CNS's constant repetitive firing of signals through poorly responsive demyelinated nerves?  Different cause but I will still zone out into escape if I can figure out how to."  I can SO relate to this!!  I often tune out, easily, and then I feel ashamed that I'm not listening to what someone is telling me.  Is that an MS thing, or an ASD thing?

I think you're on to something, and it would be fascinating to see a study regarding neuron misfiring in demyelination processes and ASD.

[supermum_ms]

You hit the nail on the head Mary!

Another thought lol some Autistic kids bang their heads, now its not for enjoyment but what if they too are experiencing migraine or whats that thing called that hurts your face we often call it suicide pain (see i'm loosing it) but they cant tell us unless they have the communication skills to do so. I'm sure many migrainers at times are ready to bang their head against the wall if it releaves their pain. I dont know but maybe they are simply stating my head hurts!

Did you know that one of the most common sx of any ASD is epilepsy, the commonality between MS and ASD is neurological and nervous system, seriously fasinating stuff!

Cheers.....JJ

[twopack]

I don't think think kids/people with autism get distracted as much as they shut down to avoid being overwhelmed by stimulus.  I see a similar reaction for some PwMS who have parasthesia.  When touch is overwhelming (and perceived as painful) we will withdrawl and avoid.  It's an impossible task to explain how it feels to those around us who always perceive touch as enjoyable.

It's been my understanding that the autistic mind is a great perceiver of all kinds of detail.  That seems familiar to me.  I have a hard time letting go of attention to detail even when I realize a broader focus would allow me to accomplish more in less time.  I don't know if that's MS or if I'm an undiagnosed high functioning autistic :)

It seems to me the frustration in autism wouldn't be so much because of self-limitations but frustration with the casual ability of everyone else around them to totally disregard the majority of environmential detail.  (You know, the way a toddler is fasinated by a catepiller on the sidewalk that we never notice.  Been there, done that, too familiar to notice.)

What wife/mother hasn't asked why she is the only one in the house to notice when a fresh roll of toilet paper needs hung?  or the trash is full?  or the phone is ringing?  We try to train our families to notice these details.

What if your brain HAD to take notice of EVERY tiny detail of sight and sound around you?  Wouldn't you want to shut it down and rest?  The challenge of autism is to train the brain to diminish it's attention on less important details.  

Now isn't some of this a little like the CNS's constant repetitive firing of signals through poorly responsive demyelinated nerves?  Different cause but I will still zone out into escape if I can figure out how to.

Okay, enough ramble.  Anywhere close JJ?

Mary

[supermum_ms]

There use to be alot of controversy on if Asperger's was part of Autism or not, it's probably still out there but i'm bit out of the loop lol. The dx is often not specified as anything more than Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS) or Autistic spectrum disorder (ASD) because there isnt really a lot of differences in the diagnostic test results when your talking about people in the normal IQ range.

Asperger's is generally accepted to be Autism but on the high end of the spectrum, because they share a triad of the same disorders, officially both Asperger's and Autism are under the catagory of Pervasive Developmental Disorder (PDD) see Diagnostic and Statistical Manual of Mental Disorders, Fouth addition (DSM-IV-TR). I cant really explain why ASD is used instead of PDD, apart from the politics of funding and services.

The differences for diagnostic purposes are few, Asperger's =  'normal' developemental language skills - Autistic = NOT developed,delayed or lost language skills during any stage of developement. Aspie = IQ normal and above - Autistic = IQ any range. Aspie = no clinically significant delay in cognitive development, age appropriate self help skills, adaptive behaviors other than social, curiocity of environment - Autistic = significant delays. So it all depends on early development to if they receive a dx of Aspergers or HFA, they can be difficult to distinguish with out that information.

Asperger's use to be said to have a physical difference but its not used or even mentioned much anymore, Aspies at one stage were noted to commonly have an abnormal gait and or laps (over extending) joints. Lachlan was in a research project specifically differenciating the gait of individual with ASD and NT individuals. One of the problems, is that many research projects that are suppose to be specifically relating to Asperger's are actually flawed, because the data base they used does not seperate any other PDD from Asperger's.

I dont know anything about Nixon, but Albert Einstien in todays world would of been dx with ASD or specifically HFA because he didn't talk until after the age of 3, well known for his brilliant mind and none existant social skills. When most people think of Autism they only think of the lowest end of the spectrum, though the spectrum is vast and no two people are exactly alike. LOL a large % of the worlds technological advances has probably been acheived by a person on the high end of the Autistic Spectrum.

Cheers........JJ

Paid up member of Quix's an-on-an club

[Lulu54]

I was listening to a piece on the radio yesterday about President richard Nixon having Asburgers.  It was fascinating.  I have several close children with asburgers but none with autism, at least not yet.  

thanks for the primer.
Lulu

[supermum_ms]

HAHAHAHAHAH nothing wrong with my brain, lol its 2:30 am and i cant get my thoughts to stop running on and on, is this what speed feels like?! lol

[cainer]

  wow--  i dont think much is wrong with your brain!!!!!!! lol  yeh  i understand we get so distracted,cant complete anything. yeh this is a great post .gosh i have trouble with everyday little things. i think your on to something here!

[supermum_ms]

Frustration is a huge part of their life, HUGE but its not really the same, in MS i think your main frustration stems from prior expectations of your own abilities, executive dysfunction and processing and your awarness of self and loss. With Autism tasks fully depend on IQ and what realistic developemental skills are achievable, the level or depth of intervention also plays a huge part in the individuals task outcome.

In truth there are a billion external factors that determine task completion, for both the MSer or person with ASD but i think it still comes back to personal expectations of abilities and who or what is setting the appropriateness or standard. Either of them could conceivably be oblivious to what is appropriate but often though not necessarily always, the person with Autism has executive functions that makes it more difficult to think outside or around issues. A+B=C C doesn't happen so repeat, A+B=C C doesn't happen so repeat etc. etc. The MSer may also have executive functions that also get them stuck, even in the same way but the MSer knows and understands from their life before MS, that sometimes even when you do everything in the right order @#^% just happens. The MSer because of their frustration will usually in time work something out that circumvents the problem, the person with ASD may remain stuck, getting more frustrated and still expecting A+B=C.

Lol thats overly simplifying it, though it did find one of the other similarities 'executive dysfunction'. Autism like MS is neurological although Autism is usually described as being a developemental issue but the truth is that their brain is no longer being wired the same as a neuro typical brain. Calling it developemental gives people the mistaken impression the Autistic child is the same but behind the expected NT developemental path, Autism isn't behind its on a totally different neuro developmental path.

If I go back to the similarities of the sensory issues, in Autism its called Sensory intergration dysfunction/disorder (SID) the cause is from a dysfunction of the nervous system, though why its dysfunctioning isn't as yet known. Quote: 'When dysfunction occurs in one area, it produces a ripple effect through the entire learning chain' [The Oasis Guide] basically children learn from one experience to the next in order to develope, but if they avoid due to their sensory dysfunction it starves their brain of necessary sensory stimulation and impedes the developemental process.

MSers can gain insight and in a lot of cases actually use what has been already developed for Autism. Why not read about sensory intergration dysfunction/disorder in Autism and you'll see that the main difference there is to the MS sensory issues is the way we treat it.

Are you still intersted or have I lost you lol!

Cheers........JJ    

[Lulu54]

What a way to start my morning - making me think~ and it's Friday.  My brain should be slowing for the weekend.   LOL

How about frustration?  Do children on various points of the spectrum express frustration at the inability to complete tasks appropriately or are they oblivous to the difference? I know I sure get frustrated with my MS at times and other times I seem to just accept it as part of who I now am.

good post,
Lulu