Was a very informative appointment I must say. Been waiting a great deal of time and finally we are here!
Dr Goulden of Edmonton really made sure we understood the information that he gave us. After studying Cade’s reports/files from school & other specialists he says that Autism is either a ‘Yes’ or a ‘No’ diagnosis - and for Cade, it’s a Yes.
What caused me to break down in the room today wasn’t the fact he said Yes, he is Autistic but it’s when he read the report from Cade’s Neurosurgeon - She wrote “I had difficulty assessing Cade because he looked Autistic” How do you ‘look’ Autistic?? Even Aidan thought that was a pretty unprofessional thing to say. 😥
What caused it? He says it’s how his brain was made obviously but because he has the Chiari Malformation (which is a brain ‘thing’) that his brain just wasn’t made how it should be. He wants us to do Genetic Testing anyways to see if there’s a link somewhere (Hereditary or not). I’m not familiar with anyone else in our family that could have had it but you never know. He wants it done for the Spastic Paraplegia too.
He doesn’t believe in a ‘Spectrum’ of Autism - you either have it or you don’t. It’s really all about the Cognitive Abilities one has with the Diagnosis - Higher or Lower , Severe or Mild. Cade’s Cognitive Abilities are good - the Doctor says he definitely comprehends and ‘knows stuff’ aside of being non-verbal and more information on that will come as he gets older but it’s the Social Aspect that is lacking. If he wants you for something, he’ll let you know.......If he wants to be with you, he has his ways of letting you know.......if he doesn’t want you around or doesn’t want to listen to you, he will definitely let you know. 😂
His feet and leg issues aren’t related to it (he says he definitely has a Spasticity and weakness there - he studied as a Neurologist too you know which is cool!) And his lack of Speech wasn’t really an issue either (could be Chiari too).
Lots of stuff for me to process. I was very emotional and still am. Usually when I hear people talk about Autism I hear a lot of ‘Stupid’ ‘Retarded’ etc.....
When really, what others find ‘weird’ is just that individuals ‘normal’.
Yes, I worry immensely about Cade’s future and how others will perceive him without having knowledge on the subject.
Moving forward - we are told to provide Cade with the most support and tools we can get. To join groups and seminars and educate ourselves to assist him. To teach him good behaviours vs the bad.
Now that the school has this knowledge they can adjust and support him to the fullest. This doctor is from Edmonton and he works with our school system a ton and he says our School System here in Ft McMurray is ‘Phenomenal’! So that’s really great to hear!
So now it’s time to read up on this as I’ve been avoiding it for so long - naive to the fact he could be but kinda already knew.
It’s definitely not a death sentence - Dr Goulden has a dear friend with Autism that has a family and a job - I loved hearing that.
But we should celebrate the fact that another box got ticked off - with obviously more tests to do and doctors to see.
And now we arm ourselves with knowledge on how best to support Cade. I’ve already been researching and buying books. I want to know all I can.