Need to hear from parents of kids diagnosed later in life

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thanks for the posts Mamaholly and MudandStars,

I went to meet with a psychologist today about redoing the psych ed to more accurately define his learning disabilities as well as discuss the possibility of privately re-screening for ASD, specifically Aspergers. She reviewed the reports and was surprised he hadn't been at least diagnosed with a written output LD in the psych ed we had done. As well, she said based on what I was saying, our OT consult report, our basic language report, and my written observations, she thought a re-screen for ASD was warranted.

I don't know what the outcome will be, but at least I finally feel like I've been listened to. I presented her with all my information (including speech, ot, report cards, emails from the school detailing incidents) before letting her review the formal assessments.

We will likely redo the psych ed in October or November, then possibly redo the ASD at around the same time.

Thanks for your support and encouragement.

cutiecrystalmom

My son was not diagnosed until age 13. First the Dx was ADHD, then depression and ultimately it was recognized that there was an ASD component of his difficulties. One neurologist told me he couldn't have Asperger's because he has a sense of humor, an idea that a pediatrician, , a psychologist, and a psychiatrist, and an adult with asperger's thought was strange. I paid out of pocket for private assessments because at his late age, I had no time to waste with bureaucratic wait times. I am a teacher myself, so I know that the process of obtaining clarity in dx and educational planning can be slow for kids. The other things I did was to ask for help from professionals I knew, to recommend doctors with experience dealing with adolescents with ADHD, depression, and most importantly, Aspergers. I got two names of experienced psychiatrists and that made all the difference. In addition I hired a legal advocate to help me thorugh the process in order to obtain accurate educational plans for my son. I do not have time for too much trial and error at his age. This whole process took almost two years, and cost me a lost of money and my son was out of school with anxiety for 4 months while the process unfolded. But now he has an appropriate iep, is on appropriate medication for his anxiety, and is being referred to schools that have programs that can meet his ASD needs. It is so hard, professionals are not in agreement, schools can't pay for appropriate programs, health insurance covers little and meanwhile you have a child that you are desperately trying to stabilize and move forward, while you also wade through the system. That is in my state in the US, I hear socialized medicine is worse as far as wait times and "doling out care", but as others have said, I think if you can, take the bull by the horns, shell out some money and get the answers you need. I was even ready to move to get my sone the services he needed, but have not had to do that. I couldn't quit my job to home school him, but I probably would have if I could have. Good luck, move now, it gets harder as they become teens.

Good news that you might get another screening for ASD. I hope that will help with getting your tween the necessary services.
I don't know how many other kids with late diagnoses are in school, and how to introduce an IEP at a higher grade level. We're going to be working on that next week and the week after. I am glad, though, that I told the resource teacher (responsible for special ed services for students, since our district (country?) is completely inclusive) that we were consulting a psych for a complete assessment, so they are expecting to make some modifications and accomodations in her program. Still, having this all done over the summer, as well as being very costly in time and money (we also went the private route) means that it will be hard to get the year off to a good start. We'll all be scrambling. I am trying to be optimistic, because we've had a great summer with lots of progress and very few meltdowns.

Best wishes for a good school year. Celebrate the little victories and remember to take care of yourself. The process takes a toll on the parent!

I haven't met anyone here who dislikes our system. In fact, it's one of the reasons most Canadians cherish their country. American conservatives have launched a campaign of disinformation about it because they don't want Americans to know how good our system is. It's fair--everyone is treated equally and money can't buy you a place at the head of the line. We choose any doctor we want by the way. There are waiting times for some because it's a triage system--resourses are limited as they are everywhere. My husband was admitted for a triple heart bypass immediately following a 'routine' test. The seriously ill are taken first--that's fair. Poor people don't die in hospital waiting rooms. The only thing you can buy is a private room. My daughter was diagnosed after a couple of appointments with a family doctor and a psychiatrist. It was free. Just as the open-heart surgery she received at the age of 22 was free--no horrendous debt at the end of it! Sure it's not entirely free--we pay taxes. Our taxes are higher than in the U.S. but studies have shown we are glad to pay for the better life we all have.
My daughter was diagnosed later in life because, when she was young in the 70s, Aspergers wasn't widely understood. When she finally decided to try for a diagnosis after many years, there was absolutely no problem.
Don't give up, do your own research, try different doctors. My daughter and I are happier then we've ever been because we understand what's going on.