A Father On Autism Regression and the Road To Recovery (Paved with Love)
"You Don't Lock Up Toddlers." Autism, Violence, Incarceration?

Child with Autism and Mom with Multiple Sclerosis

Multiple-sclerosis By Sarah Lapinski

Does your child have autism?  Do you have MS?  No one talks about it, but there seems to be a link, a link between parents of children with autism being diagnosed with MS.  I can’t find anyone who is looking into this….why?  Why can’t we find information about the link between the two anywhere?

Let me take a step back.  For years now I have suffered from dizziness, headaches, vision issues, and other strange symptoms.  I had my first MRI and yes there were small, possible spots of demyelination, but I was reassured this is common in most people walking around today.  I was told many interesting things by doctors, but most settled on me having an anxiety disorder. 

I was told, “You are dizzy because you have four kids”, “You can’t find your words because you have anxiety”, and better yet, “This is all between your ears, Sweetie”.   So I talked myself into being very stressed out, and felt my dizziness was because I was anxious. 

Years later, after not thinking about MS again, I received an official, unexpected diagnosis of optic neuritis.  I knew right away what this meant, and headed back to the neurologist.  I told him of my optic neuritis, commonly one of the first signs of MS, and I told him that I felt like I was occasionally slurring my words.  He said, “Everyone slurs their words, I slur my words all the time.  Look at you, you’re fine, your exam is fine, trust me, those old spots on your MRI could have been dust on the lens.”  He agreed to do a second MRI, just to be safe.

About an hour after doing my second MRI, I am in the waiting room.  The doctor comes out and signals me to come back.  He says, “Well you do have MS, I can’t believe it, I really was not expecting this.” 

Wait a minute…this sounds eerily similar to something I had heard years earlier, not at an appointment for me, but at an appointment for my son.  You see, my son was not developing typically.  We started early intervention at 10 months of age because my husband and I were noticing some subtle delays.   As a first time mom, I just had the feeling something was wrong.  At 12 months of age, I started questioning doctors about autism.  My little guy just didn’t’ seem like the other kids his age.   I had read some articles on red flag signs and, when I did, I felt so scared inside.  It sounded just like my baby.  The doctors and professionals reassured me “he is fine”.  “He just has a little delay”.  “He is a boy, you are a nervous first time mom, and you need to relax”.   These are just a few of the many things I heard. 

Every six months we went back and back.  “He would not be looking you in the eyes if he had autism, he is so social, and he is so affectionate” the doctors told me.  When my little guy was 3 ½, I took him back again.  At this point his speech was completely repetitive and his behavior was spiraling downward.  The doctor observed my son for 10 minutes before giving him a diagnosis of autism.  I can still hear the doctors words vividly in my brain, “I don’t know how we missed this, I am so sorry.”

One might think I would be upset at the way I have been treated and doubted by doctors over the years, but I am not.  Actually I feel fortunate.  I received a diagnosis of MS in 2 years, the last I heard the average person waits 6 years for a diagnosis.  Yes I was blown off by doctors about my son’s autism but, he did start in early intervention at 10 months and he has always had extreme amounts of therapy.  He has worked so very hard, and I am so very grateful for where he is today.  Could he possibly be farther along had he been qualified earlier for behavioral interventions?  Possibly, but he did very well with the services we had.

What I am mad about is why now when I talk to so many families of children with autism do I find out that one of the parents has MS.  Why when I tell my child’s specialist for autism that I have MS does he say to me, “ I am so sorry, but unfortunately, it is not uncommon for children in my practice to have a parent with MS.” Why do the doctors who are “ahead of their time” feel that autism is an autoimmune disorder, just like MS? Why are doctors treating MS similarly, almost identically, the same way biomedical doctors are treating autism?  Why isn’t the relationship of the two disabilities being tracked?  Why can’t I find any research on the correlation between MS and Autism?  Will one of them give us answers to the other?  Can MS treatments help autism or vice versa?  Should I have been warned that I might be at high risk for an autoimmune disorder after my son’s diagnosis?  How can parents take care of a child with a disability if they themselves don’t feel good and have no idea what their future of their MS may hold? 

Do parents in my situation need to be told in 10 years that there is a correlation between MS and Autism?  Do we have to be told we don’t know what we are talking about, to find out later we were right?

I can’t help but think of Chris Martin from Coldplay’s words in his song Clocks, “Am I part of the cure, or am I part of the disease”.  Please help parents in my situation be part of the cure. 

Sarah Westerfield Lapinski

-Mother of four children
-Mother of a child with autism
-Mother diagnosed with MS
-University of Pittsburgh Graduate Student (Early Intervention with Autism Specialization)
-Advocate for Children and Adults with disabilities

Comments

Erik Nanstiel

Sarah, god bless you. I feel that MS and autism treatments should be investigated for cross compatibility... I mean, I believe that MS and Autism both have toxicological and viral triggers. Stephanie Cave, MD told me how she got an MS patient out of her wheel chair with some treatments that have been used with success on autistics (high dose Vitamin C and chelation). Her interview is available at AutismMedia.org.

That said, I have a personal interest in both MS and Autism. My ex wife has advanced MS and requires assisted living. It attacked her MIND and personality as badly as it did her body. It is the saddest thing I have ever witnessed, short of my grandfather's decline with alzheimer's. MS and Autism have decimated my dreams of a family. Now it's just me and my severely autistic daughter, doing the best we can to build a life. Biomedical interventions have taken my daughter light years ahead of where she WOULD have been... and she's a lot healthier and happier...and well behaved... but with two major diseases in the family... the money ran out and we couldn't do the truly aggressive biomedical & behavioral therapy interventions that would have given her a chance at recovery from Autism. If I had a quarter million bucks to work with... then maybe.

I hate M.S. and I hate Autism. But I believe they're both recoverable.

treegirl

I was tested for MS years ago.... but the symptoms all came on directly after receiving the MMR in my 30s. I told all the doctors it was the shot, and they all told me I should be happy that I was now not going to get the measles. You see, I turned up neg for immunity to measles, and so I was sent for a measles shot. I had no idea that I got the MMR until a couple years ago, when I found my vaccine records.

Gram2five

We have a range of different auto-immune dieases in our extended family (cousins,etc.) I have an auto-immune diease, my daughter MS and I have grandchildren, brother & sister,(not hers) with autism. I have asked this question before about the autism/auto-immune connection, but no answers. I think the time has come that researchers should consider this a large part of the puzzle.

Benedetta

Sarah: I have been scared that my daughter's high sed rates, and high reactive protein levels after her recent Hep B would turn into MS. I do have a cousin with MS too.

Instead we got full blown bipolar complete with psychosis.

Jut goes to prove there is no need to worry because what you worry about don't happen - something else will happen that you never even thought about ever!

You think it is God trying to keep us on our toes?

MS is just one more of a long list of stuff that is added on to the list.

Let us just go ahead an put that thyroid trouble on there too.

In a recent blog on the Kawasaki's website it went something like this:

Blogger # 1
"I think thyroid can be genetic. I became hypo 9 months after having my firstborn at 26 years old. My firstborn was dx at 1 year of age with hypo. My identical twins are also hypo - one dx at 1 year and the other at 15 months. My sister was diagnosed with hypo at 26 years old. My sister and I are full blooded siblings, but raised in totally different families - we've never lived together. Thank goodness for Synthroid - we go through it like candy here in my household. Have you ever read the "Autoimmune Epidemic"? Pretty interesting book. I think there are environmental factors as well, but genetics can play here too."

Blogger #2
My mother-in-law and all three of her sisters did have thyroid problems. I am not genetically connected to my mother-in-law, or her sisters. My family elders - no thyroid problems, yet I came down with thyroid trouble at a early age."

Blogger # 3
"I do believe some people have a genetic predisposition to Thyroid disease. When my niece was DX w/ hypo and JD at the age of seven, my sister was told "genetic predisposition w/ suspected viral trigger" - sound familiar? In my immediate family we have early onset Thyroid Disease, KD and JD - not a coincidence in my mind".

To Blogger #1 -, I have heard that is not unusual for women post pegnancy to develope hypo but, your children? How was their DX at such a young age made, what were their symptoms? Being so young did they have any developmental issues? I know you have discussed this in the past, but if you don't mind repeating - Does your child who had KD also have thyroid disease? Lucky for you Synthroid is cheaper than candy!"

All this sounds like a broken record
- all you have to do is fill in the blank for what every fancy name the immune disease is.

Not an MD

Thank you, Sarah, for such an interesting article. As you were the one who knew your diagnosis ahead of your doctors, and that of your son, you probably know this already, too. However, on the odd chance that you do not, please consider looking into the health benefits of turmeric, flaxseed oil, and Vitamin D as holistic aids that might potentially mitigate some symptoms of MS, in addition to any other conventional medicine that has been recommended. This is not medical advice, but nutritional wisdom. All the best to you in your quest for wellness.

Pierre Morin

Dear Sarah

I am not sure the link is direct , but the question must be ask , that prior to your MS diagnosis , did you receive a HEP B shot.

If so , I would recommend you read up on Dr. Marc Girard in France , he did a major study of explosion of MS in france following 1990 to 1994 HEP B vaccine campaign .

I hope that this can help

Pierre

Mary

Makes sense since both are caused by mercury poisoning.

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