Life with Sensory Processing Disorder

Monday, December 16, 2013

Here it is

I am an adult female (close to 40) with Sensory Processing Disorder & Asperger’s Syndrome. I am only recently diagnosed. I am blogging about this to shed light on what I am finding is rare and so hard to find any info on, Adult SPD. Apparently 1 in 20 children have some degree of SPD, but not many adults. The doctors & OTs I am coming into contact with are all so surprised and seem amused. I feel like shouting, “YES, I am an ADULT with SPD, get over it and f@#$ing help me already. No, I don’t want to take an IQ test, I don’t want any more exams, I don’t want to tell my life story again, or see another doctor who will only refer me to another because no one has a clue what to do for me, an adult.” I don’t want to be poked and prodded, examined and made to feel any worse than I already do. Yes, I am very frustrated and angry. I’ve been dealing with this all my life and my family has only told me repeatedly that I am way too sensitive, stupid, crazy, it is all in my head, I am making it up, it isn’t possible. That is the environment I grew up in. If you are a parent of a child with SPD - please, please don’t ever say things like that to them, don’t punish them it will only make things worse, make them feel bad about themselves. I’ve been reading that the rate of suicide in teens & adults with SPD is quite high. No wonder, it is undeniably depressing to think that life will always hurt, things out of your control will always cause you pain, illness, anxiety, stress. Not many understand or believe you. And there is no cure, no medicine. I am not sure if this is true, but one doctor told me if SPD is not caught by the age of 7, there isn’t much they can do to correct it. Some therapies may help, but nothing will make it go away.

I can deal with Asperger’s – hell I’ve suspected it for a long time now and am ok with it. I’ve always known I was different, this just confirms it. I don’t want to be like everyone else, I like being different, thinking uniquely, being creative & artistic. But the SPD, that is a struggle. I feel like a freak when I can’t handle basic day to day things like a shower, chit chat, being in a crowd, getting physically sick from smells, having meltdowns as an adult. Before I ever knew what SPD was I sought out things that felt good and brought relaxation, some soothe, but none truly help long term.  
I want to share my journey to raise awareness and hopefully help someone else on this roller coaster ride of adult SPD. I hope someday there is more info, help, and a cure for SPD. If there is anyone out there that reads this blog and has this disorder; you are not alone, you are not crazy, adults do struggle with this, and while it is not easy, there are ways to manage, cope, and get support. While I’ve had & hidden SPD my entire life, I am just beginning my journey of telling people, learning more, seeking help, finding specialists, and trying occupational and alternative therapies.

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