Monday, May 9, 2016

Guest Post: Susan S., Autism and Mastocytosis

Susan S. reached out to me on my facebook page to share her story with all of you. I was happy to do so. Read on to hear about her experience being diagnosed with autism, and also mast cell disease (or mastocytosis). As you can see, she found my page for a reason! Having a child with autism and another with mastocytosis, I'm sure glad she found me, and that she could share her story.



I was 33 when I finally received my autism diagnosis. There were just a lot of things that led up to it. I always knew I was different. So did my mom. But getting a diagnosis in the 80's was probably harder than pulling teeth from a crocodile.

As for how it made me feel, at first I was like WHO AM I? Then as I learned more about it, I realized a lot of things suddenly made sense that didn't make sense before and I came to accept it as part of who I am.

Symptoms.... I call them signs. There was the speech delay, the delayed walking, just the lack of truly functional verbal communication, the social awkwardness, the desire to fit in and belong and have friends but the inability to actually do so. Did we suspect autism? Not in the beginning because we truly did not have the information we now have.

My challenges: I need routine. A break in routine can throw me off. The weather changing can throw me off. Too much noise or color or texture can throw me off. It's like living on a roller coaster.

My blessings: Just being able to know more about why I am different from others. It helps me to know there is a reason. Plus I feel more connected to God and to nature as well. I feel like autism gives me a unique perspective of the world that others lack. I am able to see more of the beauty of the world.

Other challenges I have are with regard to being able to get and keep a job. I somehow can practice an interview and do fine, but when I get into the real interview, I flub up. I wish that I could have someone do the interview for me in place of me.

In terms of helping others understand autism, it has not been easy, but the biggest thing I think has been teaching them that autism never goes away and as such, no one should be aging out of services and programs for autistics.

I also use a lot of identity-first language. I want people to know that's okay. In my advocacy for autism, I emphasis that adults still need access just as much as children and that we need early intervention and diagnosis. One of the biggest success stories in my advocacy so far has to be the fact that my state autism agency finally lifted the age cap on tennis clinics making it possible for more to be able to attend and one of the individuals to stay with it. One of the boys loves it so much but he was turning into an adult and aging out. It made no sense for that to happen.

I also discovered I have mast cell disease. I will be honest, we are still in the early testing stages, but all these years of losing immunoglobulins and being allergic but not having my IgEs agree that I was allergic now make more sense. The allergist was testing for venom allergy due to some concerns we had raised in clinic about my having been stung by a wasp the year before. And when he tested it, he also tested the serum tryptase level. It came back slightly elevated. So he said he wanted to test it again. Again, it came back slightly elevated but higher than the first time. But one of my doctors took the leap and started me on cromolyn sodium oral solution while he looks into what biopsy we need to do for me, and so far it is helping a lot, especially with my gut issues. That's what was impacted the most - my gut.

My daily life has gone from constantly having to interrupt meals to find a restroom and from constantly having to be in the restroom to being run by a strict medication schedule, but I am going to stick it out with that medicine because for the first time in a long time, I am not having to see the restroom so much (at least with regard to the gut, the bladder is a different issue). What I have learned is that a lot of systems can be affected. It's more than just skin, but can also be systemic. And never rely on what you think you knew about allergies either. One day, I can literally have no issues, but the next be all itchy and tongue ulcers.... It's a long journey though, and I have only just begun with the mast cells.

Another thing, and this is kind of the perplexing thing is that both mast cell disease and immune deficiency are pretty rare and somehow I have both. They tend to go in equal but opposite directions. I'm no longer just a zebra. I'm a zebra-corn! (Zebra/unicorn)

One thing for people to know about autism? That's a hard one, but maybe I would just want them to have a simple understanding. So, one thing about autism is this: Being autistic is like being a Mac computer in a PC world. We eventually do the same tasks, but we take different routes to get them done. One thing about mast cell disease: Fight. Do not let a doctor say to you that they can do nothing for you or that they refuse to do anything for you. While my state has no specialist, there is a specialist they can communicate with. So fight.

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