I’ve discussed many time our journey with Korey since finding out he has Sensory Processing Disorder (SPD) . I am the only mom locally that I know who has a child with SPD so I thought it would do good for me to join a parenting group on Facebook specified towards SPD. Well it didn’t take long for me to get ticked off.
Here’s the topic from some mother who thought she was being helpful:
” who told you your son or daughter has spd? do you realize it is not a real diagnosis. my son was given this “diagnosis” per a professor, at age 4. but when my son went to a psychologist at 6 we where told he has autism. and spd is not a real dx. do you all realize this? anyway it is not a dx that will get you help for you child like a dx of autism will: so perhaps others should consider taking their child to psychologist”
I had my own personal moment of losing it before I tried to nicely contribute to the conversation. I have a background in Psychology and one of the first things you should be learning about Psychology is that the DSM is updated yearly, this is the book that they pull out when you visit a Psychologist and fill out fun questionnaires and talk with them. They use this to tell you what you “have”. There’s a few problems with that stupid book.
To fit a specific diagnosis you have to have so many attributes before most Psychologist will say you have that disorder. Another annoying thing is that the book is constantly being updated yearly, new diagnosis that are added have been undergoing studies and not everything gets to make the cut. That is where Sensory Processing Disorder is.
There is much evidence that Sensory Processing Disorder is a stand alone diagnosis, but it’s not in that stupid book so a doctor or Psychologist could say “it’s not real”. However MANY recognize it and realize that is can occur alone. Most often you will see Sensory Processing Disorder in children with Autism Spectrum Disorder (ASD). Children with ASD almost always have SPD but the reverse is not true. That’s where the problem lies.
Before starting OT with Korey and joining the parenting group on Facebook I could not find any good information about child with just SPD. It came to one point where I was crying to Keith saying I wished Korey had ASD so that it was easier to find more information and that he could fit everything I found.
While the mom above may have been trying to be helpful it hit home to many of us parents who only have a child is SPD. It’s real to those of us who wake up to it every morning and go to bed to with it every night. We don’t need a piece of paper to tell us that it’s real, we see it every. damn. day. For me, while I haven’t been faced with challenges getting Korey help, the whole conversation gave a face to the people I have to fight for SPD to be recognized. I’m not going to allow my child to be diagnosed with something that he doesn’t have just because it isn’t in a book.
I feel for parents that have to fight for their child with SPD only but getting your child diagnosed with ASD when they do not have it can be very bad for them in the future. There are certain jobs that do not allow those with ASD to work, they will have certain stereotypes on them for a diagnosis that they do not have and really treating the sensory problem will be almost impossible without making your child go through therapy they don’t need.
Have you ever joined a parenting group?