It has been about 3 months since Reine’s Autism Spectrum Disorder and Sensory Processing Disorder diagnoses. I have spent countless hours researching, reading, listening to audiobooks, scouring online and thinking outside the box. Lots of trial and error. Somethings are working amazingly for us, some we are tweaking to find the balance. I know that I have barely begun to scratch the surface of it all.
We are on several waiting lists for Reine to be seen by various specialists. Each specialist decides if she needs to be evaluated by yet more specialists and which ones, what new recommendations we will be given, and if she is going to be diagnosed with something else. Each of our waiting lists seem to be between 4-9+ months long.
If you do not have patience, with Autism diagnosing, you will learn to have patience.
We have seen the following specialists so far….
- Speech Pathologist
- Pediatric Neurologist
- Occupational Therapist
Today we added Pediatric Neuropsychologist to the above list. We were told that this appointment would be several hours long and very intense for Reine. They were not kidding. They tested, among other things, her intelligence, visual perception, language, memory, learning, attention, and executive functioning. Basically this means they did a battery of tests that measures Reine’s cognitive skills and overall brain functioning.
We will have a written report of today’s visit and recommendations from the Pediatric Neuropsychologist in 2 weeks.
Autism is no longer divided up among different diagnoses like Autism, Aspergers, etc. It all falls under one main category now…..Autism Spectrum Disorder (ASD) with 3 main levels.
There are 3 main levels of ASD.
Level 1 Requiring Support
- Difficulty with social situations.
- Difficulty in switching between activities.
- Able to speak in full sentences.
- Attempts to carry on conversations but is not sure how to continue with the conversation.
- Has a hard time making or keeping friends.
- Issues with organizing and independance.
Level 2 Requiring Substantial Support
- Issues in verbal and nonverbal communication.
- Social issues even after support is in place.
- Limited social interaction.
- Inflexibility of behavior.
- Issues with change.
- Noticeable behavioral issues.
- Difficulty changing focus or actions.
Level 3 Requiring Very Substantial Support
- Severe issues with verbal and nonverbal social skills.
- Very limited initiation of social interactions.
- Limited response to others.
- Inflexibility of behavior.
- Extreme difficulty with change.
- Repetitive behavioral issues interfere with functioning of daily life.
- Intense issues with focus or change.
Reine is considered to be Level 1 and Level 2 on the autism spectrum levels.
Changes we have seen in Reine since diagnosing began.
- She is able to cut with scissors while holding her hands in a “normal” position instead of upside down and side ways.
- She no longer races away from us in public settings such as stores, malls, and in other public areas where there is a lot of stimuli. We have not tried going on walks or playing in parks because where we live. It has been too cold here for that. I am not going to lie, 20-30 degree weather just doesn’t do it for me! We will try these this spring, summer, and fall. Hopefully these will be amazing experiences for her, as they have not been in the past.
- We are seeing less “violent outbursts” from her as we are able to stop it more and more and help her to figure out what she is trying to tell us. However, running upstairs and / or screaming are still happening.
- She is beginning to write her letters. She will watch us write them on a piece of paper and then she will write them on her own piece of paper.
- Reine has to have some form of a second noise distraction on. By this I mean she will play a game on her big sis’s laptop. The game will have music of some form playing. She will then have to have a second form of noise on the laptop. It can be music, movie, or video playing in the background etc. It must be louder than the game’s music, but she must still be able to hear it. It gives us around her a headache. For her, it appears to be soothing. She will often allow me to turn on music via bluetooth and be content with just that noise and the game. It depends on her mood.
- She is craving school. When we do our homeschooling, she will do a minimum 20-30 worksheets of various kinds in a sitting. It can be anything from cutting (though she will only cut the thick lines), to coloring, to dot to dots, to pasting, sorting, doing puzzles, etc.
- I am not allowed to read her books of any kind at the moment.
- Reine tries to figure out what people are saying and repeat it or match the rhythm of the words they are saying or singing at the same time they are being said. It comes across as a mumbling. If she is watching a movie on the laptop, she will stop it and repeat a sentence or scene over and over again for 20+ minutes at a time. Repeating the lines with the characters.
- Scripted play is almost constant now.
- The need to chew is stronger now. She is chewing her fingers until there is indentations on them if I can not get her hew sticks or her chew necklace to her in time. She has gone through 2 chew sticks this month.