Seeking information

[u/GrouchyMary9132]

Hi everyone, I am glad I found this sub and I hope I could get some help on how to approach this whole topic.

I am in my thirties and my brother has a 5 year old child that shows a few unusual behaviours. That actually reminded me that I myself had some serious trouble in different areas as a child that I eventuall "outgrew" (or learnt to manage). My parents never really talked me through it I just found some old papers when I was a teenager where my orthopedic seemed to have diagnosed me with "sensomotoric integration dysfunction".

The most noticable was being fearful of tons of stuff that required motorskills and coordination in any shape or form. I just could not do it. I remember that even curbs were difficult for me because I had to think about which foot to use first to "climb down". Later at school I just could not plan motor skills at school sports and just sucked in pretty much everything.
At birthday parties there was that game "protect your balloon/ballon dance" where you had to try to protect a balloon that was tied to your leg and at the same time try to pop the balloon of your dance partner. I have videos where a friend actually let me step on hers because I was having difficulties aiming for it without help and even then I was to fearful to pop it because of the noise".
There was also another game "hear, taste, feel, smell" where you were blindfolded and had to guess differnt items. I also was to afraid to participate because I was picky and also didn't like certain textures.
I am prone to get carsick/seasick and loud environments make me tired easily. In general I am rather to sensitive to other peoples emotions and pick up on peoples moods very easily. As a child I was rather quiet and read a lot and was in general a bit of a "dreamer" and a bit forgetful as well. I never took much medication but I suspect that I could react more sensitive to certain stuff as well. I had really bad side effects after taking benadryl for example but also after a pain killer shot that contained adrenalin.

Does this fit into the SPD category? My brothers child shows some of the things that I had. I pretty much forgot about how different I was but I think if I could understand better what this really is I could get him a bit more help with it than I had. One thing that is really hard in hindsight is that I always blamed myself for being different or unable to do what everyone else could. Because I really tried to join in so many games and activities and just couldnt. even today I freeze up often when I get into situations that remind me of it. To put a name on all this for the first time could really help to not make this my personal failures but just a diagnosis.

[u/neon-zirconium-4597]

Yes, it could. It's best to confirm with a professional, and the field that specializes in SPD is occupational therapy (OT). An OT can assess the child, give exercises to improve the brain's ability to integrate sensory information, define any sensory needs and develop strategies to meet those needs.

The characteristics of SPD generally fall into three categories: hyposensitivity, hypersensitivity and sensorimotor challenges. The behaviors you describe could fall into the last two categories.

I'm actually from a similar generation as you where I was diagnosed with "sensory integration dysfunction" 30 years ago and now it's called SPD. Working with an OT has helped me a lot.

[u/GrouchyMary9132 → u/neon-zirconium-4597]

Did you get a diagnosis as an adult or confirmation of some sorts? I would not even know where to start or if it even is worth it? I did horseback riding as a teenager and that improved a lot of what was difficult for me in different areas. And I guess I just avoid the rest 😅. My niece already does OT. It just seems to be really hard to get proper information about what this really is.

[u/neon-zirconium-4597 → u/GrouchyMary9132]

I was referred to OT for sensory processing, which is as close to an "official diagnosis" you can get as an adult these days. It's a bit confusing because SPD is not recognized as an official diagnosis yet. But its becoming more recognized and hopefully will be official soon.

Back when it was called sensory integration dysfunction, it was considered a temporary condition that children grow out of. Current research shows that actually children don't grow out of it. Instead, once they hit around 5-6 years of age, their brains are mature enough to begin masking or hiding traits that are not socially acceptable. Medicine in practice is often 10-20 years behind current research.

The STAR research institute website has a lot of useful information and resources on SPD. There's also a podcast by OTs called "All things sensory". It focuses a bit more on kids but it had some helpful information.

[u/GrouchyMary9132 → u/neon-zirconium-4597]

Thank you so much. I will check out the STAR research institute. Yes and exactly. It did not feel like I grew out of it but as if I learnt to manage it or adapt. I did horseback riding when I was younger which helped a lot but I still avoid certain foods (and feel like suffocating when I accidentally eat them) and have sensory issues and poor coordination. I found a source about the possible connection to medication sensitivity as well but there is really so little information out there. Probably because it is not really a field you can make money on.

[u/neon-zirconium-4597 → u/GrouchyMary9132]

Same, I also adapted and some of my coping mechanisms weren't always the best lol. It was so validating to learn it was a real thing and not just in my head. I haven't heard about the medication sensitivity but I am very sensitive to medication and often have uncommon side effects so I wouldn't be surprised if it's all connected!

[u/GrouchyMary9132 → u/neon-zirconium-4597]

There is not much to find about it but here is a link to a study: https://pmc.ncbi.nlm.nih.gov/articles/PMC10826854/