Autism and Mast Cell Activation Syndrome
Autism and Mast Cell Activation Syndrome.
This is a subject that is near and dear to my heart because of my own personal experiences. I have a story that I would like to share with you. I haven't even talked about this on my blog yet because it was so traumatic that I have just avoided the subject...until now. I feel that now is the right time to bring this up.
I was born on Jan 13, 1992 weighing 3 lbs 15 oz. I was born premature.
Age 10 I was diagnosed with Pervasive Developmental Delay and Sensory Processing Disorder. I have had sensory issues my whole life. The specialist that we went to at the time recommended physical therapy (PT) for the sensory processing disorder. The idea was to desensitize the brain to textures, smells, sounds, etc. It was trouble from the start. This was one of the most traumatic experiences of my life. Between the ages of 10 and 13 I was in physical therapy for my sensory issues. Unfortunately I got a bad physical therapist named Camy. She didn't understand all the trauma that I had been through and was going through at that time in my life. On top of that she grilled me relentlessly about school. (I'm 29 now) but for 27 years I was ashamed and felt guilty for my health issues and the fact that I wasn't in school. (Thankfully, I'm no longer ashamed or feel guilty about my health issues. I had a big emotional breakthrough in that in 2019.) On top of all the trauma I was going through at the time, my brain was screaming at me 24/7 and the physical therapy was only making it worse. I knew that the physical therapy wasn't going to help me. I knew there was something more going on at the time but I didn't understand what. After watching this video, everything makes so much sense now. During the PT sessions they had me messing with shaving cream, paint, etc. things that smelled strong too. Now I know all those things are huge mast cell triggers. Even the vibration tool they used was a trigger because vibrations can be a mast cell trigger. When your skin feels like it's crawling all the time, putting a vibrator on you, is only going to magnify that feeling.
The PT didn't work because of the mast cell activation syndrome. The PT was actually triggering the MCAS. I can't tell you how traumatic it is when you're brain is screaming at you all the time. If only we had known this back then we could have avoided a lot of trauma.
If you have a kid with autism, before you put them into PT for sensory processing disorder, PLEASE check to make sure they don't have MCAS, especially if they have allergies, because if they have MCAS, the PT will only be a trigger. I don't want others going through the trauma I did.
Now it makes sense why it took me so long to learn to wash my own hair. Several years ago, before we knew about MCAS, I started noticing that when my "allergies" would flare up, my sensory issues would go through the roof! I started noticing there was a correlation there, but it never made sense. I never understood why that was happening. Now that I know I have MCAS, it all makes sense!
Now that I finally have my MCAS under control, I can finally take a shower without my brain screaming at me the whole time. My Sensory Processing Disorder is directly linked with the MCAS. Figuring this out has been a game changer for me!