It finally happened! After pushing and fighting for my son for so long, the ADOS was scheduled! The Autism Diagnostic Observation Study is a 2-3 hour where they have a script of things to say, ask, or do with certain toys or objects and write down word for word what the child says or how they respond to the situation. Dr. G would bring out a tiny doll set with a mommy, daddy, brother, and baby and then create a situation for them like saying, “Uh-oh, the baby is crying.” Then wait for Killian to respond, if nothing happened she would repeat herself saying the exact same thing. She used different scenarios and would write his response. Then she brought out a few random objects to see what he would do with them. One of them was a CD and Killian was overly fixated on the colors as the disc spun with “atypical visualization.” He would continue to spin it and intently watch in silence and was seemly oblivious to what was being said and done around him. During the Lego portion he would ask for more pieces without making eye contact and instead hyperfocused on the dragon that he was creating. Dr. G would not respond to him the several times he asked until he would make brief eye contact and tell her he needs more pieces, then she would acknowledge his statement and reply.
During the make-believe portion of the test, Killian had a very difficult time pretending that one object was something else. He did not respond well to social intrusion and would become upset if Dr. G would try to play along with him. The dolls were always referred to as “that guy” or “this guy” instead of by name or pronoun of mommy/daddy/sister/brother. When she would grab the disc and say, “This is a space ship,” Killian would reply with an irritated voice, “No, it’s a disc.”
He exhibited functional play with cause-and-effect toys and throughout the entire 3 hours his sentences were disjointed and sometimes incoherent even though his words were said in a correct fashion and included some complex vocabulary. He would engage in brief conversation but usually it was only with topics of his choosing or interest, otherwise he would ignore or even start talking about something completely off topic. He showed zero interest or even recognition in Dr. G’s feelings or emotions when the social press portion of the exam took place. His eye contact was fleeting during the Reciprocal Social Interactions segment. His imagination was limited in play and in the end he met the cut-off criteria for Autism in the ADOS-2 classification.
Based off of my large family history of anxiety and the results of the DSM-5 questionnaire that I and his teacher, Mrs. E, filled out, in addition to the behaviors witnessed during the ADOS, Killian tested positive for Autism and Generalized Anxiety Disorder. His anxiety results showed high levels during social peer interactions and communications.
Killian was also diagnosed with Sensory Processing Disorder and ADHD (Attention Deficit Hyperactivity Disorder). Ya, I know, It’s a lot. But you know what? The second I got off the phone with Dr. G and I had conformation that proved my claims correct, I printed up the copies of his ADOS progress notes and diagnostic results and I danced around my front room. I felt like I could finally breath as a huge weight had been lifted off of my shoulders. My heart didn’t feel as heavy and my stress melted away. I finally had answers and reasoning! I finally had proof!
Now, this is going to sound really bad but there is truth in this. Autism is “The Golden A.” As soon as that diagnosis has been given and the child has been labeled as Autistic, your world has COMPLETELY opened up to specialists, therapists, school mandated assistance that the law will crack down on to make sure that it is being held to the letter. An IEP will be written and I PRAY that he will be given a one-on-one aide at school, even just part-time for the most troublesome parts of his day once he starts Kindergarten in September.
And as happy as I am with all of this, I am also extremely overwhelmed and my anxiety starts creeping in. I start wishing that I had a personal assistant to help me schedule my life. We are now adding ABA Therapy (Applied Behavioral Analysis) to this schedule along with speech therapy and an audiology screening. I am having to call and find people who accept his insurance AND are accepting new patients. I have to fill out even more paperwork for each of those places and add him to the waitlist hoping that a slot will open up for him before he ages out of the specific program that would be best suited for him. I am trying to figure out when we can schedule appointments around school, behavioral therapy, chiropractic care, occupational therapy, little brother’s speech therapy, and the everyday doctor’s appointments like dentists, general practitioners, and pediatrician appointments.
This is all just the very beginning but I am happy to be where I am now.
And then the realization hit that I still needed to break the news to my husband. The man who hears the word Autistic and only sees the kid flapping his hands in the corner of the room while rocking and making the same loud sound over and over again. The man who thinks that Autism means that the child is mentally retarded and can’t do anything. The man who told me he didn’t want to put a label on his son when I told him about the ADHD diagnosis and said that it doesn’t matter because it won’t change how he is with him and then said he doesn’t want to talk about it. The man who used to tell me that everything that was wrong with Killian was my fault and that there is something wrong with me.
To say that my anxiety was in full blast was an understatment. I didn’t know how to tell him. He can be a conspiracy theorist when it comes to doctors and will say that they don’t know what they are talking about and are only trying to get money out of you. I was scared that when I told him, he would respond with all those thoughts and reactions geared at me again. I was terrified that he would be in denial and say that the doctors and myself don’t know anything and that there is nothing wrong with him. He would see the very physically capable son of ours and say, “Look at him! He can walk, talk, and do everything that any normal kid can do. He isn’t sick or dying! He is perfectly fine and there is nothing wrong with him! He just needs more discipline and you aren’t being strict enough with him! It’s your fault for the way he acts!” Every one of my fears about our marriage falling into the statistic of divorce with a special needs child came to me. Even though we both are very against the idea of divorce (obviously in the instance of abuse we believe safety comes before staying).
I was scared. I know I needed to tell him. I needed it not only for our marriage and the fact that he is the father of this child and deserves to know what is going on with his son, but I needed to tell him for me. I needed help with my stress and the weight of going through everything completely on my own for so long. Even though he is not an emotionally empathetic man, I needed my husband to share in this new life WITH me.
So, one night after I put the boys to bed, I asked him to pause his game because I needed to talk to him about something very important. I told him that it was regarding Killian and that I was really nervous to tell him. He got worried that something deadly was wrong and I immediately squashed that fear so he then got frustrated and told me to just spit it out because he needed to know if there was something going on with his son. I reminded him about all of the therapies and doctor’s appointments and evaluations and testings that I had mentioned to him that I have been taking Killian to and he said yes. I then let him know that I got the results back.
I took a deep breath and said, “Killian has been diagnosed with High Functioning Autism, ADHD, Generalized Anxiety disorder, just like my entire family and myself have, and Sensory Processing Disorder.” To which he just calmly replied with, “OK. Is that it?”
I was pretty taken aback. I mean, on one hand I’m like, Is that it?! That’s a long list dude! And on the other hand I’m thinking Oh thank God! That went WAY better than I had anticipated.
I asked him if he believed us and he said yes and asked why he wouldn’t. I told him that he normally says doctors don’t know anything and make things up and he says, all shocked, “When have I ever said that?!”
“Umm..like EVERY time you go to the doctors.”
“Oh well that’s different. That’s for me,” he says. As if that makes all the difference in the world. *Rolls eyes*
I asked if he had any questions and he said that he didn’t. We did the tests and paperwork and this is what it says. He said he knows that Killian is a little different from other kids his age but he will never love him any less.
I started crying. I told him that I was so afraid to tell him and when I told him why, he said he has no memory of ever telling me those hateful things about it being all my fault or that something was wrong with me. He apologized for having ever said it and asked me to please forget that he ever did since he doesn’t even remember it. I explained to him why I am always so stressed and exhausted when he gets home from work is because my brain never shuts off. I am constantly thinking of things that I need to get done in the house, or appointments that I need to make, doctors I need to call, therapy schedules, school and how he was sent to the office twice this week for hitting kids and the teacher. I told him that I really needed his help carrying this responsibility. Even if that just means he take a little more initiative around the house and with the boys before they go to bed or let me be cranky and frazzled until they are in bed and I can just sit down and talk to him.
He then took it a giant step forward and apologized for adding to my stress by not being more self-reliant and always asking me to do everything for him (find his glasses, get his night-time meds, get him food/drink, etc.) when he is fully capable of doing simple tasks for himself instead of asking me to go and do things for him while I singlehandedly get the boys fed, food put away, get them in their jammies, teeth brushed, and into bed while he stays laying on the couch playing a video game.
That realization and apology was not at all expected but it is definitely VERY appreciated and welcomed.
My friends and family have been praying for me and for my husband’s mind to be open and accepting of this information. And to them, I again thank you.
Our journey has only just begun and I know that there will be a lot of trials and tribulations ahead. But for now, I am rejoicing in the answers we have and the acceptance that was made.
-The Lazy Mama