Here is a fun fact according to many medical professionals: children with sensory processing disorder grow out of their sensory issues, and become well-adapted teens and adults.
In a previous post I coined the phrase: people grow out of sweaters, not neurological conditions.
I know this is true because nearly every week I read about a new person realizing that they have had sensory issues since childhood and these same problems continue to plague them in adulthood. However, these adults struggle to find a doctor willing to help them.
So this leads me to my next conundrum. Due to the belief that SPD is a disorder of childhood – WHICH WE GENIUSES OF THE INTERNET KNOW TO BE NOT TRUE – another belief now exists that there are no adults suffering with SPD. I use the term suffering because I’m almost certain nobody that has this condition actually enjoys it.
Because of this idea that adults don’t have SPD, and doctors don’t always recognize it, we cannot get treatment or help OR ANYTHING because apparently we are not legit.
Start from the Beginning
When I was thirteen years old, I went to a occupational therapist to talk about my worsening sensory issues. I was previously diagnosed with SPD at age 6, and 10 by an OT. Here’s a little summary of what happened:
The OT handed me a piece of paper containing information about how to create a good sensory diet, AKA things I already knew. My experience mirrors that of countless others, who, as adults, were unable to receive actual therapy beyond a consultation from an OT solely due to their age. Even worse, most adults who believe they have SPD cannot find an OT who will see them just once for a consultation.
I don’t know of any other condition where this happens. Age should not be a factor in being able to receive treatment for a possible neurological disorder. And so I thought to myself, “Self, it’s time to investigate.”
Find me an OT!
I took it upon myself to pretend to find an OT in my area that would work with SPD adults. Trusty ‘ol Google helped me out with this. I am not lying when I say that every single place that offered occupational therapy services in my area were clearly places for children:
Pediatric This; Pediatric That; Fun in the Sun OT; Big Leaps OT; Little Hearts OT. You get the picture.
Strangely, back in the early 90’s when my Momsy was desperate to get me some help, she had a very hard time finding an OT that would work with children! I kid you not. OT was an adult thing. My my, how the times have changed!
Like with other neurological conditions, people like to pretend that once children grow up, the problems don’t exist anymore. It’s like the Magical Neuro Fairy waves his wand and the problems are gone! AMAZING!
How do you get a diagnosis or even better – TREATMENT – for Sensory Processing Disorder as an adult?
I don’t know.
The world of Occupational Therapy and SPD seem to revolve around children and children alone. I don’t know why this is, when there are clearly so many adults with sensory issues.
However, I’ve created a list of ways that will give you the best chance of getting a diagnosis:
- Contact any and all OT’s in your area and ask if they’re willing to meet with you (yes, call the OT center for children. You have nothing to lose). Even if they aren’t willing to do actual therapy with you, at least they can screen you and tell you whether or not your issues are sensory related.
- If option 1 doesn’t work, speak with your regular doctor and ask for a referral to see a specialist, such as an neurologist or psychologist/psychiatrist. There is a small chance that they can help you with your sensory issues. This is a neurological condition after all.
Crap. That list was shorter than I expected.
What to do if Kelly’s list didn’t work because it was too short:
Luckily, Sensory Processing Disorder is one of those problems that you can successfully manage on your own, without the help of an OT or medical professional. There is an abundance of information online – as well as in print – to guide SPD’ers of any age.
Here is my new list of what to do if you believe you have SPD but are unable to get a diagnosis/treatment because of your age (or any other reason):
- Go to a library, bookstore, or Amazon.com and get the following books:
- Making Sense: A Guide to Sensory Issues by Rachel S. Schneider
- The Out-of-Sync Child Grows Up by Carol Kranowitz
- Uptight and Off Center: How Sensory Processing Disorder Throws Adults Off Balance and How to Create Stability by Sharon Heller
- Too Loud, Too Bright, Too Fast, Too Tight: What to Do If You Are Sensory Defensive in an Overstimulating World by Sharon Heller
- Create your own Sensory Diet. What is a Sensory Diet? A Sensory Diet is a treatment plan that will help you throughout your day to manage your sensory issues. The “diet” usually consists of various sensory-related activities that help regulate and calm your specific sensory woes. For example, using a Wilbarger Brush 3 times a day, or using Chew Toys can be part of a sensory diet. Each person is different, and so each Sensory Diet will be different too.
- Join support groups for adults with Sensory Processing Disorder. I am currently an administrator for the Facebook group, Sensory Processing Disorder Adult Support. The page provides great emotional support and answers for SPD adults, both diagnosed and undiagnosed. There may also be support groups that meet in-person within your community.
- Find a mental health counselor or therapist to guide you through the other crapsauce that comes along with dealing with sensory issues. It’s not all about OT, you know. We are people, and people have feelings.
For the record, it’s very much OK to not have an SPD diagnosis. This is not a life-or-death condition, even though it can be a this-is-ruining-my-life condition. A diagnosis will not change how you approach your own life, and how you go about being proactive about your sensory issues. (An exception to this would be if you need a diagnosis for work or school modifications. In that case, a doctor or even a therapist may be able to sort out your educational/vocational issues without having to give you an “official” SPD diagnosis.)
I hope this was helpful to you, and if it wasn’t…then I’m not sorry because I did take a lot of time to look into this (hahaha). However, I am sorry that the world isn’t up-to-speed with how to best help adults with sensory issues. It really sucks. Until that time, be your own advocate, and have some cake/cupcakes my friends.
The “only for kids” finding you made echoes my experience here in Australia. When l searched for an OT who deal with sensory issues in adults in NSW where I live, I found that they were all about kids. I even emailed the Australian national organisation for OTs to ask where to find one, they could not help.
“Sensory Processing Disorder Australia” is also all about kids. Their introduction says:
“What is Sensory Processing Disorder (SPD)? SENSORY PROCESSING DISORDER (SPD) is a complex neurological condition that impairs the functional skills of 1 in 20 children.”
(1 in 20 sounds rather extreme by the way… that can’t be right?)
and a brief look at their content makes it clear that they are geared to parents and about kids. Apparently no one think to ask themselves what happen to those kids when they grow up. They must be assumed to all grow out of it, or to all self-annihilate by the end of childhood.
So, SO true. I actually only learned about myself because of my autistic son…And now what.
Thanks and love,
Full Spectrum Mama
The STAR Center in Greenwood Village, Colorado treats teenagers and adults.They are the leading place for research and treatment for SPD right now and run the SPD foundation. They frequently have clients from around the country. They have an intensive therapy model where you do OT once or twice a day for about 6 weeks. It works wonders! However, they don’t take insurance. You would have to do your own filing. But still, it is worth looking into. Especially if you have severe symptoms.
I an going to an OT soon for a diagnosis (I’m still young enough I might get one!). I am using a sensory diet already, the thing is, I accidentally added friend’s really soft hair to it. Life is weird.
I went to the Star Institute a month ago for a week. I’m 43 and my birthday present was an SPD diagnosis. I highly recommend Star. They have a consolidated assessment/treatment program for people who travel from afar.
I didn’t mean to sound sarcastic. It really was a gift to get the diagnosis. For the first time in my life I knew without a shadow of doubt it wasn’t “all in my head”. It doesn’t matter what other people think you should and should not perceive. If YOU perceive things in a way that is clearly different from other people, you are worth exploring why.
I agree with Kelly that an SPD diagnosis is not a life or death condition. It actually opens a door to a deeper understanding of who you really are, if you are willing to take the steps to get there. The journey is worth it. I’m not crazy and neither are you.
Thanks for your bloggy posty thing Kelly. I am thoroughly enjoying it!
I’ve just stumbled across your blog, and I am so glad. I was diagnosed with SPD this year (by a children’s OT!! 😂) and have been really struggling to find further help. My mum and I realised we kinda had to just do it ourselves, so we’ve been reading crazily and stumbling along trying to figure it out. Your blog is the first thing I’ve found written by someone about my own age, which is very exciting for me, and reading your articles has made us feel less alone today! Thank you so much 💖
Hey Sarah! Sorry for the seriously delayed response to this. Yes, I’ve found if you’re not a child, you really have to advocate and seek help on your own. It sucks, but it’s the only thing we can do. I started blogging primarily because of what you said – there was nobody my own age with this problem. At least, I felt like it. I’m so happy I was able to brighten your day. I hope you are doing well xoxo
Thanks for this. 🙂
I just want to thank you for putting this out there…I can totally relate to all the things you are saying. Only recently have I found out about SPD, and it’s making a lot of sense to me, it explains so many issues I have dealt with for years, and I just thought I was a weirdo.
(Well, maybe I still am, but anyway..) My 2 year old son has been “unofficially” diagnosed with by an OT. Because I guess we are just not as official as autism or another disorder…(whatever 🙄) Anyway, just wanted to say thanks, and your drawings are hilarious and spot on…they totally capture what going through these situations feels like. Thank you again, and you are definitely NOT ALONE!
Thanks so much Monica! And all the best people are weirdos…embrace your true nature 😛 xo