My Son Is Turning 12, And We're Just Starting The Process Of Diagnosis. What Am I In For? | MyAutismTeam

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My Son Is Turning 12, And We're Just Starting The Process Of Diagnosis. What Am I In For?
A MyAutismTeam Member asked a question 💭

My son's reaction was "Great, they're giving me more letters. " He was already diagnosed with ADHD, PTSD (from being bullied at school). His neurologist is absolutely certain he's on the spectrum. We can't get in for testing until June (is that even right? ). I just want to know what this next few months looks like. And if anybody else had a team of doctors NEVER MENTION THIS for 12 years.

posted December 14, 2018
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A MyAutismTeam Member

Hey! It’s a long road ahead for the diagnosis but your on the right path. I took me 4 years to convince doctors to consider diagnosing him. But my best advise is to treat the situation like your son does have asd even without the diagnosis. Start doing visual charts, you need to remind often about steps for routine or getting dressed ect..(use 1 to 2 steps at a time because asd children can’t retain much at the same time), do research, start behavioural charts. Be your sons advocate because from experience even with a diagnosis you don’t get the help you need. I’ll be 3 years on a waiting list without any help from agencies! At first it’s overwhelming to do things on your own but now things are much better and we are so proud of what my son has become! 😄

posted December 15, 2018
A MyAutismTeam Member

Hey! I feel ya. It was a long journey for us, and the doctors didn’t want to listen. I remember holding adhd medication in my hands and having so much anxiety over giving it to my son because I knew deep down they miss diagnosed him. And the meltdowns is a bug indication of asd as you explained with your son. Once they get into them, there is nothing you can do but let it run it’s course that could last for hours! You feel helpless! But I promise if you do your research and learn some strategies you can stop the tantrums (most days)before they escalate xoxoxo

posted December 16, 2018
A MyAutismTeam Member

Hey! My son was first diagnose as adhd. But I knew he was missed diagnosed! Higher functioning asd children are always mistaken for add, adhd (It could be combined with asd but in my case it was just asd) keep on asking questions, and fight! As parents you know your son better than anyone, don’t let doctors send you home with results you question.

posted December 16, 2018
A MyAutismTeam Member

Be glad doctors never mentioned it for 12 years. It means he has always been verbal and his delays if any were not significant.

posted December 15, 2018
A MyAutismTeam Member

@A MyAutismTeam Member We felt like something just wasn't fitting when they diagnosed him. And then so much happened in between.... it was hard to tell if his meltdowns (because that's our biggest struggle. There's other things, but the meltdowns are catastrophic) were adhd compounded with the ptsd, if it was JUST ptsd, if we were just super crappy parents? And, his neurologist (who is newish.... and we love her) does believe it's a combination of the three things. She said he may have been on the spectrum his whole life and never been diagnosed or had it acknowledged in any way. But, the ptsd caused such a major social regression that he can't even go to school anymore. So, she wants us to get on this. It's all just frustrating enough to make me desperate for the nap that (obviosly) I wil never get to take.

posted December 16, 2018 (edited)

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