This post contains information that NEEDS to be said. Warning: the following may cause epiphany, sudden awakening of the soul, and Oprah’s “ah-ha” moment. Proceed with caution.
Approximately 93% – I just calculated that statistic in my mind – of all information on sensory issues, both in print and online, are geared towards children.
For a while, that knowledge left me feeling like this:
One of the main reasons I started this blog was due to the near absence of information and resources for adults with SPD on the web or in books. The only exception to this would be a few blogs, and Sharon Heller’s Too Loud, Too Bright, Too Fast, Too Tight, which has become the bible for sensory-plagued adults. Unfortunately, SPD adults often find ourselves reading sensory books geared towards children, and attempting to relate the information to our adult lives. It can be awkward.
Like many neurological disorders, sensory processing disorder does not go away with time.
A fun fact is that according to many medical “professionals,” children with sensory processing disorder just learn to live with their problems, or they simply grow out of the disorder.
At age 13, many people – including myself – were turned away from occupational therapists for the sole reason that we were too old to be treated for our sensory issues.
I remember asking my mom, with confusion, “What’s the difference if I’m 12 or 13? I still have the same disorder. I still need help for this.” Momsy didn’t know what to say, and she couldn’t have known.
Here is what I know: growing out of something is for clothing. People grow out of sweaters. People do not usually grow out of neurological conditions. They manage it and – in the case of SPD – learn ways to live within their specific limitations. SPD can regulated with various therapies (occupational, physical, or psychological), but there is no cure for it just yet. However, this leaves us SPD adults with many problems.
It leaves us feeling a strange sense of being “unwelcome.” Adults are not the target group, if you will, for awareness and research. SPD adults are very much ignored and neglected by the medical community. We often feel a sense of guilt for even asking for/seeking out help from professionals. We are given this look when we mention SPD to our doctors:
This is not Hogwarts, my friends. SPD cannot be sent away with the flick of a wand, nor does it magically vanish when we turn 18. It is not fair or right that adults with neurological conditions such as sensory processing disorder are left in the dark simply because they are adults.
As an adult with SPD, I can assure you that my sensory problems are here to stay (for now). I’ve overcome many of my sensory struggles from my childhood – yes. However, newer and more overwhelming challenges have reared their ugly faces into my life as an adult with this condition.
Due to the belief that SPD is a disorder of childhood – WHICH WE GENIUSES KNOW TO BE FALSE – another belief now exists that there are no adults with SPD at all. Because of this idea that adults don’t have SPD, it is not recognized by our society, and therefore, we cannot get help or respect.
SO WHERE ARE ALL THE ADULTS WITH SPD?
I’ll tell you where they are. They are struggling to find their place in a world that doesn’t work with their sensory system. Without acknowledgement from our community regarding this conundrum, we find ourselves turned off by the world.
Moral of the story is this:
Adults with SPD are out there. We are here! (Well, not really. We are actually trying to avoid the entire world while simultaneously being part of the entire world. It’s a tad complicated.)
Spread awareness and educate your fellow human beans that, in fact, adults with neurological condition DO exist. We need your compassion and respect in order to overcome our challenges.
That mentality definitely needs to change! Good post 🙂
I am an adult with SPD. While most books are geared towards kids, they still teach you the symptoms of SPD, how it functions neurologically, how to understand sensory signals, how to manage your own neurological organization, and a multitude of other things. Reading these books helped me to understand what SPD is, and how it can be helped. I learned self-therapy along the way (plus from hours of shadowing and interning). I used to wonder what my life would be like if I had gotten therapy as a young child, but I have gotten past that. I am who I am. I am definitely still learning things about myself in relation to SPD, and learning to understand how to help myself. Things are also very different as I begin to move into the adult world, but I can deal with the challenges as they come.
Therapy and research is directed towards children for multiple reasons. They have the most neuroplasticity so they gain from it the most. If this generation of sensory kids all get therapy from an early age, then while obviously the population of adults with SPD will still exist, they will all understand their disorder, and have gotten significant help for it already.
Also, the STAR Center in Greenwood, CO does provide therapy for adults.
Sometimes I wish that more people knew what SPD is. I feel like I have to explain the entire disorder whenever I need someone to accommodate my needs in some way. Yet, everyone has some idea of what autism is, but their ideas are mostly made up of limiting stereotypes. So perhaps the fact that I get the chance to be their source of information is a good thing.
Reblogged this on We Called Him Lucky.
Reblogged this on 21andsensory and commented:
OMG YES! This is the whole reason I created my blog to raise awareness of how adults have SPD too and that most of the online info is geared towards children. Love this post!!!
Reblogged this on closertohappiness and commented:
Thank you for posting this! I’m seeing an OT who primarily works with children, and I’m realizing how important it is to have information and research for adults with SPD. My hope is that the more that we, as adults with SPD, advocate for ourselves and share our experiences, the more treatment options and information there will be.
I almost jumped for joy when I found your blog a few days ago. I was all, “another sensory adult?! Someone who doesn’t write child-aimed sensory stuff?!? HALLELUJAH!!!” And you’re right. I was diagnosed with SPD when I was 11 and even then, most of the “advice” was for people much younger than me. And the place I went for occupational therapy specialized in children younger than me. I couldn’t even fit on most of the equipment. And I was rejected at 13. But guess what? I still have spacial awareness problems. I still have trouble finding sensory-friendly clothing. I still feel horrendous pain when I hear loud noises. The only difference is that I don’t melt down in public. I run to a private area and have my meltdown there.
Hi there! It is always exciting meeting new people online that have so much in common. I wish the medical community could understand and respect the fact that SPD is a huge problems for adults too. Like, can’t an adult go on a swing and dangle from playground equipment without being stared at by strangers?! *sigh*
always learning on this blog!
Great post- had a mid-read google and read of Sharon Heller’s site and now I really want to get her book. I too always have that sense of guilt thing when asking/seeking any help, to the point where I have such a great fear to go to the doctor’s that I haven’t been in a long long time, despite having several issues.
Also love that you are able to calculate difficult statistics in your mind- I too have been known to do this. AND also love the “same person only bigger” picture. You seriously should have a “picture/humor/memoir” book out on SPD, I would definitely buy it.
I think when it comes to finding professional/medical help, it’s all about finding that “right” person. I’ve been to countless doctors who are giant turd faces, and the whole experience emotionally drains me. When you find the right doctor, who you will be able to confide in and trust, the whole experience will make you say, “why haven’t I done this sooner?! I feel like a turd face!”
As for the book thing, I have very much considered it, but it seems like such an overwhelming undertaking….perhaps in the near future….if my stars are aligned, I’ll do a book. 🙂
A million times yes! I’m a teenager with SPD, which means I’m sort of in the strange position of “I physically cannot conform to society’s stereotypes and don’t want to anyway, but everyone expects me to,” I have read entire books on parenting sensory kids. This can be rather awkward, particularly due to the focus on “observing your sensory child,” which would be a great thing if I didn’t happen to live inside myself. 😛 I have found some good strategies in these books, but I definitely find adult SPD self-help strategies more helpful.
At 67 my SPD is getting worse not better. As brain circuits start to fade the problems get bigger not smaller. I have hypersensitivity issues and could easily retreat to my computer cave. But that would be too easy…. Hooray for Temple Grandin.
I LOVE the sound of a ‘computer cave’..! 😍 😍 😁
Your cartoons make me laugh and cry at the same time. Oh they’re wonderful
I’ve struggled all my life and only had SPD dropped on me recently cos I’m going through a period of extreme stress that last time I went through something similar led to electrolyte depletion from constant vomiting and then cardiac arrest – at thirty years of age. So yeah my GP is useless – he knows I’m sick but he’s somewhere between the camp of ‘she’s exaggerating’ to ‘mystery ailment’ – my my cognitive therapist referred me to an OT since she knows me well and realised that my problems were not originated from mental or emotional issues
I am so grateful to have found this blog cos ha, yeah I’ve found that there’s no much for adults
Thanks for writing to me! I’ve also had my fair share of experiences with terrible, ignorant doctors…so I feel you! There is little info for adults with SPD, but slowly it is beginning to emerge. I’m surprised you found an OT willing to see you. Many adults I know struggling with sensory issues are hard pressed to find an OT at all. I hope you are able to get the help you need, and I’m very glad you found my blog 🙂
Thank you for blogging on this subject. I was born prematurely in 1954 & have SPD aka SID, partial vision (Retinopathy of Prematurity), brain processing issues, ADD, balance issues, motor skills issues and about a million other things. My belief is that most everything originated from prematurity.
I found out about SPD about 20 years ago from Google searches.
In my childhood, there was no therapy, adaptive PE, special education classes, everyone thought I was odd. My divorced parents, like everyone else, had no knowledge of the condition & were not equipped to support me, or the school system. However, I have managed to figure out how to do things in my own way & function in the best way I can.
Doctors have not been helpful to me in any way, even though I asked when I was age 15, what was wrong with me, why was I different? He just ignored the question, as have many others. After I found out about SPD,I found out that therapy is not available for adults.
So sorry for everyone who suffers this invisible condition & for the support they are not receiving. Sincerely J.
So glad there’s at least [some] awareness of SPD now; when I grew up you were just ‘fussy’ or ‘awkward’; zero understanding of it as a genuine condtion, hopefully it’s better for kids now – tho’ maybe not for us adults! I was diagnosed ASD in my 40s, by pure chance despite 30 years consulting clueless Drs; I don’t know what is part of my experience is SPD & what is ASD, I don’t think even the ‘experts’ know, while they argue over venn diagrams, but yes it’s real, & it’s weird to imagine some people don’t have it, as it’s so normal to me; finding bright light painful, finding some noises & textures, & people, unbearable..
Thanks for writing this blog; every bit of info. & personal reality put out there makes things better for us all; helping people without it understand, adapt stuff, & helping people with it know they really arn’t the only 1s in the world. 🙂 x
Thank you so much for all your posts! My son & I enjoy reading them. We identify with many things you say. My son is 21 now, has SPD, had some OT when younger, but it didn’t help much, & the struggles have gotten worse lately (new college campus doesn’t help). Very true, it is hard to find help for adults with SPD, but children with SPD grow up to be adults with SPD, who still need help & understanding. Thank you for helping to open people’s eyes. Hopefully one day there will be more knowledge & help. Right now, we just pray for & through each day. We hope you keep the posts coming! 🙂