I have SID as an adult

I was going through the checklist and found that over 85% of it applies to me. Living with this disorder isn't easy. I'm 21 now and have learned to cope with it, but nonetheless it still causes problems in my day to day life, daily functioning, social experiences and relationships.

I am hypersensitive to touch, smell, light, and loud noises (to me anyways). I also have problems with internal regulation with appetite. I have to remember to eat, because I don't have the neurological drive. I have this in relation to ADHD, Panic/Anxiety Disorder, and OCD. The latter two are very mild, compared to the ADHD and SID.

For those of you who have children with this disorder, I encourage you to be as understanding as you can be, because living this way can be somewhat difficult at times. Needless to say, besides the drawbacks I have had a good life and sometimes having this unique way of seeing the world is helpful. If anything it can sometimes be regarded as a super power out of a science fiction movie. (Although I have no idea why people find it cool to be able to smell an individual from across a room. I don't find it pleasant at all, especially when I'm the only one who notices how oppressive an elderly lady's perfume is UGH)

Also some children who have this disorder are said to be gifted in some aspects because of our unusual view of our environment. Like for example, I'm very good at art and music, because I interpret sound and visual stimulation differently.

When one learns to cope with this disorder, they can lead a semi-normal life. Everyone is different, all I know is how my individual SID affects me. Feel free to ask questions, as someone who lives with it everyday I would like to help others.

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Sep 16, 2010
SI Runs in My family - 3 generations
by: John

I am 40 this week. I found out through diagnosis of my 7 year old that he and I both have SID. Actually my younger brother, my father, and my cousin as well. I use humor as well to deal. I lose focus at work often. Some days I cannot complete a mental task unless I go out for a walk or do some serious physical labor. Luckily, I am helping both of my sons that have SID. I remember days in school not being able to understand what the teacher was teaching or trying to teach. I felt like such a dummy. All the other kids seemed to understand and master the materials so easily. All I knew was I wanted to go outside and RUN. After I came back in the class from recess, I could look at the chalkboard and understand perfectly.

I am still sensitive to certain fabrics. I HATE WOOL! I would wear a sandpaper coat before I would wear a wool coat. My boys are fearful of having toenails and fingernails cut. The youngest has food sensitivities. I can sympathize with them about crowds and noise, so I take them out when they need it. Pediatricians need more education on this. Print the symptoms and take them to your doctor. My oldest son (13 years) was mis-diagnosed with severe ADD/ADHD. Look at the symptoms side-by-side. I've seen two kids mis-diagnosed and mis-medicated. Do your research. Your children are depending on you.

I told my dad four years ago what my boys and I have. He said he had it too and that it went away when he came out of the Marine Corp.

Thank God for this site and all of YOU wonderful parents that care enough to dig the answers out yourself and help your children. Too many kids are being mis-diagnosed. My oldest son was diagnosed as severe ADD/ADHD based SOLELY on my wife and I answering a questionnaire. The principal graded it, then gave us a note to take to the pediatrician to get him started on RITTLIN (sp?)Thank God my wife's cousin is a pediatric OT and diagnosed him as SID like her son. We also had to teach my kids' pediatrician and several officials and counselors at their schools about SID. It is frustrating, but hang in there and remember that God loves you and does not give you more than you can handle. You WILL be helping other parents of children with SID. My son got an accurate diagnosis at Easter Seals in Nashville Tennessee. See if you have one in your area.

Dec 04, 2009
Hang on in there...
by: Narayan

Hey, i'm 55 now and have held down a good job and loving partnership for many years, but like you these symptoms sum me up. All my life i've had the extreme sensitivity to noise light and touch and all the other things that go with it, sometimes to debilitating degrees. Yet I am a professional editor working in a fluorescent tube barn of an office. So: you CAN learn how to use these characteristics to good effect. Here for what it is worth is my own advice:

1) HUMOUR is a life-saver. If everything gets too much, well sometimes you gotta laugh. This might sound ridiculously simplistic - and yes it is simple. But keeping a sort of lightness about what you can or cant do makes the difference between misery and self-acceptance.

2) FRIENDS: Dont get pressured into panicking about the quantity of friends you have.

3) ALONE time. Without it, yr life will not be able to function. I went thru two marriages and many r'ships before stumbling on the answer with my current partner (8 yrs together): Live apart! Never forget this golden rule

4) MEDITATE: It's yr filter between a live well-lived and a life of desperate pain. Learn this skill.

5) GIVE: you may need alone time, you may need to withdraw. But giving to others in some way, when you can, makes a huge huge difference. I was lucky enough to donate a kidney to my eldest brother last year, even knowing that the experience would be a possible nightmare of loud noises, weird smells, rough sheets, no privacy. Giving makes yr heart grow...

Nov 22, 2009
My 12 year old & SPD
by: bird

Thank you for writing your experience as an adult. I have known my daughter to have this diagnosis since she was in 3rd grade. It is very hard for her to be the "normal child". Most especially I find her emotional responses to things cause her to have difficulty relating and maintaining friends. She actually doesn't seek out other kids anymore. It is stressful and even if she feels lonely, I guess she prefers that to the unpredictability of interaction. Online kids chats and games have given her a sense of having friends in a non- threatening environment.

I wonder if you have any suggestions in your experience of how to deal with the angry responses and moodiness that seems to injure her relationships. Do you know of any help out there? I find a plethora of stuff for elementary school kids but nothing for teens.

Anyway thank you for posting. And best of luck to you.


Sep 23, 2009
my son has this too...
by: Anonymous

my almost 4 yr old son has this disorder too. he also has trouble making friends. He prefers to play one on one with another child and often withdraws from group situations and plays alone. It is so hard as a parent to watch this occur. It is good to know that as an adult with SID you are leading a mostly normal life. I hope my child can overcome some of his sensitivities in time with OT.

Sep 09, 2009
by: Anonymous

Soooo glad to hear you are able to lead a somewhat normal life. I hope my 4 year old son can do the same!!! Did you have a hard time making friends? My son seems to be somewhat antisocial at times. When he isn't it just seems as though he doesn't know how to act around other kids. How old were you when you found out you had this?

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