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Thaddeus’s Autism Eval

February 19, 2015


This may be one of the hardest posts I’ve ever had to write.  I’m sure I’ve given away how this ends.  So I’ll just start with that.  Thaddeus was diagnosed as having Autism Spectrum Disorder yesterday by Marcus Autism by the ADOS testing and observations of several therapists and psychologists.

When I got home yesterday I felt like a zombie without much to say besides questions. How? Why?  What?  I was completely blind sided and surprised by the diagnosis.  As was basically everyone that has ever been around Thaddeus.  Including therapists and family friends with children on the spectrum.

I have had a few concerns about Thaddeus over the last 3 years.  Its hard when you have multiple children diagnosed as you don’t know if you’re being paranoid or if the behaviors are learned or if you are indeed seeing red flags.   I had read studies about studying eye contact of infants with autism and how they appeared to be looking at your eyes but if you REALLY watched, they were watching your mouth.  I noted several times when going to Marcus that I felt when Thaddeus was nursing he was looking at my mouth and not making good eye contact. At 18 months I was allowed to speak to a psychologist would diagnosed Thaddeus yesterday to voice my concerns.  She did a few things, announced my concerns unfounded and I went home feeling like a paranoid autism mom.  Thaddeus also didn’t react to pain normally. I took him to countless shot visits where he would never cry.  At my in laws house the staircase starts with a few stairs and then the first landing.  One day he fell off the top stair onto the landing, got up and ran off.  Even when he busted his tooth into his gums, he cried for awhile, then appeared fine.  He got a knife out of our dish drainer the other day, cut himself and never told us. Never cried. Never reacted.  That said, there were plenty of other times that he would fall and cry and react appropriately.  It is hard to know.

Over the course of the last two days during testing, I will say that I was very surprised at how Thaddeus tested.  They would ask him questions and he would fail to respond or say ‘I don’t know’.  He seemed very distracted by the two sided mirror in the room, often sticking out his tongue and making silly faces in the mirror vs attending to the therapist.  He was willing to sit at the table and attend to tasks for over an hour the first day which was just the preschool language testing.  He was doing a lot of tensing up/shaking.  Rett used to do this too but its gotten less and less as he grows up.  We’ve been letting Thaddeus watch the leap frog letter factory dvd to learn his letters and the V is for volcanon and it does a lot of shaking for the /v/ sound.  Rett also loved that letter and little blip of the movie the best. Often he would reinact it and shake.  I felt like that was where the shaking was coming from because he had been watching the movie so much.  The speech therapist noted one time he laid his head down and shook/stared into the corner for an amount of time that she found concerning and suggested that I follow up with neuro about possible seizures.

Yesterday was the ADOS and developmental testing.  Thaddeus was definitely getting ‘stuck’ on certain toys.  One of them was a little toy phone that they want the children to pretend talk on. Instead Thaddeus saw it as the little pager from octonatus. Everytime you open the phone a new animal would appear. He would say ‘What do you think this is?’ and hold it up for the lady to see.  This went on for some time.  She got out the little hopping bunny and he would hold the phone in front of the bunny and ask him what he thought the animal was.  He would go and do an activity for a little bit, but then immediately go back to the phone.  There was also a lot of script speech/tv talk accompanying this.


They spoke at length yesterday before finally coming to get me. And as they told me they would have another girl watch him while they spoke with me, I knew.  This is what they do when you are going to get a diagnosis.   And I put on my big girl panties so I wouldn’t cry.  So I wouldn’t be in such shock that I couldn’t absorb what they were going to tell me.  Repetitive behaviors were the script speech and obsession with the phone.  Speech he was off because although he has even more language than he should at his age, he cannot use it to answer questions or for back and forth conversation, as much as is expected from a newly turned 3 year old.  And socially, he was slow to engage although sometimes he would eventually and his eye contact was extremely low.  He did not check in to see if I was watching him.   When his name was called, he would attend very quickly.

Do I believe Thaddeus has autism.  Given what I saw over those two days, yes.  I noticed in the last six months a change in Thaddeus.  He started doing more tv talk and script speech, more acting and less engaging.  I had told Tom I thought he was around the other two too much and we had decided he would go to mother’s day out next year in an attempt to have him around more typically developing children.  I felt that maybe he was picking up on some of this. But you don’t learn low eye contact. And the things he does, although similar to Rett aren’t exact copies.

So what now?  I asked the ladies yesterday.  If I took him to the school system, they would believe he needs no services at this point I was told.  His speech is on level, he knows everything he should as a 3 year old.  He doesn’t need PT and if he needs OT it would be for sensory things.  I am planning on pursuing the mother’s day out program where he would go 5 days a week half days.  And I am also going to follow up with our speech therapist we’ve used in the past and see what suggestions she has as to if he needs therapy or not.  I will also be getting an OT eval done once we hit deductible in a few months.  I also have a follow up with their psychologist at Marcus in August who will re-eval him and can follow up on the MRI or whatever needs to be done for the possible seizure activity.

The thing that gets me the most is that not only was Thaddeus diagnosed today but in my mind and heart, Lachlan was too. Thaddeus had a 1 in 3 chance of having autism having two older siblings already diagnosed.  I don’t even think there was a % for 3 siblings.   I’m already checking the boxes in my head.   He hasn’t laughed yet.  He seems so quiet.  He has food sensitivities already.  Isn’t that more common in autism?

It will be a tough year and a half waiting for his first eval.  Which Thaddeus passed his with flying colors so what does that even mean anymore.

I’m out of words of wisdom, hope and strength.   I’m sick of the ‘you’re such a great mom, he’ll be fine’ from people who say that to make themselves feel better. Because you have no idea if he will or not.  There is no guarantee in life. Life is hard enough without this.   Or he’s still the same little boy he always was. Oh really because last week I wasn’t going to be whisking him off for a million evals and watching him for possible seizure activity.  Perhaps these are things you say to the mom facing her first diagnosis. But not your third.  I cannot hide behind denial or maybe this is just something that will go away with enough therapy.  I’m going straight to step seriously pissed off.  How? Why? What?  And we still call him our Baby.

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