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