Our Diagnosis

Leading up to the diagnosis was during a very stressful time for us as a family.  My husband was gone for 7 weeks of training for a new job, leaving me alone to work 50 hours a week, stay ontop of the daily keep of the house, take care of our son who at this time was sleeping maybe a few hours straight each night, and me being very worried about the whole process.  It might sound weird, but I was most nervous about NOT GETTING A DIAGNOSIS.  I was worried that all of my research, hard work, and accommodations would make it seem like Joshua was "fine" and it was all in my head.  And if they had said no diagnosis my reaction would have been, ok but what is going on with my son then?

Thankfully our experience through the whole diagnosis process was actually quite a positive one.  We met wonderful people at the Glenrose Hospital in the Preschool Assessment department who really just wanted to listen and support us.  When I met the doctor who was going to decide if Joshua was on the spectrum or not, she came in walked right up to Joshua who was playing with a car, and she took it from his hand and began to play with it!  Of course in my head I am thinking "Oh great, here comes the meltdown."  But what did he do...he looked right at her, making great eye contact, watched what she did and then copied her when she gave the car back.  I immediately thought we are done, of course he just did that! If I had taken his car it would have been world war 3!  She was so excited to see his reaction and the amazing eye contact he made, and how he interacted with her......

I was nervous and this momma got her back up because I thought here was another doctor who has been with him for like 5 min is going to say, "Oh he is not autistic", just like I had heard from our paediatrician.  We continued to chat about Joshua and started to discuss some of my concerns and his behaviours.  I began to feel much more comfortable and at ease, and I am an open book, as you can tell, and I talked about all the struggles, challenges we have had since he was born.  All the accommodations we have made at home, and she listened and had also read most of this in his file.  But I began to felt heard, and not feeling crazy.  She had noticed that Joshua was able to stay in the room if the lights were off, she lowered her voice, and didn't necessarily interact with him more.  She listened to me talk about how nobody could hold him but me or his daddy from 2-7 months of age; how he ate the same homemade macaroni and cheese meal every night for dinner for over a year, how he rubbed his head on the doors, walls, and floors, how he ran back and forth getting as close as possible to items he was trying to look at, how getting out the door was a screaming fest, how he would only eat certain fruits if they were a little over ripe so they would mush easily, how he still screamed bloody murder while getting his bummed changed, how he only played with cars, how he didn't know how to interact with children but only adults.  FINALLY someone with answers was listening and could really help us with some closure, as I saw it.  I needed an answer.  I needed to know what was going on so I could further help him, because that would always continue no matter what the doctor said.  I needed an answer so our family could get the support it desperately needed to try and remotely become happy again instead of constantly in survival mode.

By the end of our first session with the doctor, she had told me that yes he clearly meets all the criteria for an Autism Spectrum Disorder Diagnosis, we had a couple other sessions including a hearing test, but she wasn't concerned about his hearing.  It was like music to my ears, I felt the world come off my shoulders for a brief moment, and felt a little lighter.  I wasn't crazy.  And I wasn't looking for Autism, as I had been told, I was just seeing it evolve in my son.  The second day was a hearing test to ensure that his severe speech delay and other challenges were not due to issues with his hearing.  What a disaster and terrible experience that was for Joshua and for my husband and I.  We had to sit in a very small, enclosed room which is like torture for Joshua.  There was no way he was going to wear the headphones as his ears were very sensitive and I couldn't even touch them most of the time.  He did great and responded well for the first few sounds, but once a sound happened that he was afraid of, the whole test was derailed.  He was terrified, covering his ears, screaming, desperately trying to leave the room,  Watching your child in distress like that is heartbreaking and filled with guilt because we are making him do this.  I didn't have any concerns with his hearing, but the technician wanted to keep trying to make sure he could hear certain sounds.  They brought in another technician to distract him in the room, we brought toys, bottles, both daddy and mommy.  We tried everything, but he was just in too much distress.  Thankfully the doctor was not surprised by his reactions and didn't feel it was necessary to try again.  We recouped with some lunch and we totally bribed our son with a cookie.  Little mom guilt...

We were diagnosed with Autism Spectrum Disorder on Halloween of 2017.  Of course this label and piece of paper that went with it didn't really physically change anything that day, but it did start the process of really understanding our son even more and beginning a path towards more happiness.