Our daughter was 2.5 years old when we first started looking for help. I went to a family friend who is a pediatrician, I brought the list of sensory behaviors that I had checked that she fell into. She wasn’t familiar with Sensory Processing Disorder (SPD) but referred us to a psychologist. We met with the psychologist and asked, “Is this Autism?” We spent the next 3 years working with this psychologist. I never really let go of the question, “Is this Autism?”
I’ve seen this question asked over and over in support groups, what is the difference between SPD and Autism Spectrum Disorder?
What is Sensory Processing Disorder?
We actually have eight senses: touch (tactile), taste (gustatory), sight (visual), sound (auditory), smell (olfactory) and there’s three more vestibular (balance, coordination, spatial orientation), proprioception (sense of muscle and joints) and interoception (internal regulation for thirst, hunger, etc.). Sensory Processing Disorder occurs when the brain receives mixed messages. Basically it’s the way the brain processes the senses.
Sensory Processing Disorder can be a standalone diagnosis and it can also be diagnosed along with other disorders. It is also a symptom of Autism.
What SPD looks like in our house?
Our daughter would have extreme reactions to tactile input: clothing, soap, water. She was sensitive to food textures, but constantly put everything in her mouth. She was sensitive to sounds (auditory) and smells (olfactory). She sought out deep pressure (proprioception), hanging upside down, rolling on the floor and constantly jumping. She’s also sensitive to vestibular movement and would fall down frequently. She would seek out movement though and was constantly busy.
What is Autism Spectrum Disorder?
Autism is a neurobehavioral disorder that can affect language, communication, social interactions and behavior. It is a spectrum disorder in which it differs from person to person in severity and combination of symptoms. Overall, it affects how kids process certain information for example facial expressions. Basically, it is very complex and complicated and even more so in girls.
What ASD looks like in our house?
Our daughter from a young age had difficulty regulating, she wasn’t able to self sooth and continued as she grew with difficulty regulating her emotions and her body. Behavior is one of the biggest challenges we have. She has a huge vocabulary and always has but has always been unable to hold back and forth conversations and gets lost in a room of 3 people talking. She has difficulty communicating wants and needs and simple social skills like responding back to someone who says hello. Play for her can be challenging as she tries to navigate a world of social cues that she isn’t aware of, knowing how to play with objects is also challenging for her and she avoids things she doesn’t know. She gets stuck in reading the same book over and over again and is often unwilling to try new things. Everyday tasks are extremely difficult with the amount of executive functioning needed to complete a task like brushing teeth.
How I expected our world to change.
Every year of my daughter’s life I questioned if what we were dealing with was Autism. We started working with a therapist when she was 3 but our daughter wasn’t diagnosed with Autism until she was 6. Her only diagnosis had been Sensory Processing Disorder.
I thought we finally had hit the mark, it is Autism. I thought finally things would change. I thought that now that we had an Autism diagnosis life would change.
When she was 6 we walked into an evaluation room. We told our story again. We went through everything in detail. This therapist worked with our daughter for hours testing her. A few weeks later we met with her and we heard her say your daughter has Autism. I thought I would feel something and I didn’t.
I think I maybe didn’t breathe for a few seconds.
I thought it would bring new hope, new therapist and more open doors but it didn’t.
I thought more things would be covered by insurance and it wasn’t.
The only thing that really changed was the acronym that we use to describe the challenges that are faced in our family and by our daughter.
For so many years, I felt like I wanted it to be Autism. I wanted it because I thought there was more research, more people experienced with Autism. I thought it would allow more help in school and more acceptance.
I’ve learned that despite having a diagnosis, despite having a signed document from the most well-known Autism center in our state I still have to fight for services. I’m still driving hours for therapy.
I’m still fighting the same fights.
It never ends.
Life is still the same, the struggles are the same, and we just call it something different.
Welcome to Voices of Special Needs Blog Hop — a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and Mommy Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo — from Sensory Processing Disorder to ADHD, from Autism to Dyslexia!