The Dx Process - I'm not crazy, I've had them tested.
By request, this post is about our journey through the diagnostic process.
As always, this is about MY experience, I have no idea if the process has changed (I doubt it) and I'm unsure of how other methods of seeking a diagnosis work, but I'll do my best to give you a bit of a guide.
Firstly, I'm often asked why get a diagnosis at all. There isn't really a simple answer here, but as I like simplicity when I can manage it my basic answer is that the label is important.
Yes, I know, we're not supposed to pigeon hole people. We're told that labeling our kids is wrong. "If you tell them they're XYZ they'll always be/rebel against being XYZ."
In my experience that all depends on how you use the label. I think I'll come back to the topic of labels another time - I feel a rant coming on, so I'll just put a pin in that.
The Diagnostic Process!
I've told you about calling the local community health centre for help with Ratbag (that's another label that can be seen as wrong - oh well) in my last post. Once I'd decided that I wanted to seek help I just followed my nose.
Ratbag was relatively straight forward:
A day or two later I received a phone call, the panel had compared notes and reviewed the questionnaires and determined that my little man is indeed Autistic. "If he'd been diagnosed a year or so sooner it would be called 'Asperger's Syndrome'" the Pediatrician told me.
I WAS SO HAPPY!
I wanted to tell everyone.
I remember calling my Dad, I hadn't even considered that it might be something to be sad about until I heard confusion in his voice.
I explained why I felt that this was such a positive thing. How hard it had been feeling like I couldn't help my child and knowing there must be something more to it. And now we know! I was RIGHT! I'm NOT CRAZY! It's not bad parenting! It's not my fault that all the advice hadn't worked for us! There's nothing wrong with him or me, we just didn't have all the information... and now we DO! AUTISM!!!! Oh My Gawd! WOOOOOOOOOOOOOOO!!!!!!!
Then Dad said "We should have know." and recounted the time he really came to see his grandson was a bit odd. We'd been having a family dinner. Ratbag must have been 4 years old. As we were eating, there was a lull in conversation and the boy looked up, scanned across the faces of three generations of his closest family members and remarked "One day you'll all be dead." and returned to his meal.
We were all left a bit gobsmacked. He said is so matter-of-factly, not with malice, or dread, or remorse. It was simply a fact that he'd thought of and voiced it out loud.
I'd completely forgotten about that until Dad brought it up.
We should have know.
From there I was given the phone number for Aspect Australia, who in turn sent me some more forms to fill in - if you haven't picked up on it yet and are considering diagnosis, there are a LOT of forms in your future, soz bro - and put me in touch with government funding and an Early Intervention Specialist. I'm not going to say this was a fun or simple process, but compared to others, it was easy.
However, when it came to having my daughter assessed, it's a very different story.
The problem with the standardised tests for autism that the community health system are required to use, is that they are somewhat out-dated and do not account for the way autism presents in some people - typically, but not exclusively, in girls. I will get to my musings on the matter eventually, but in the mean time sink you teeth into the wonderful world of ASD girls here, here, or here.
By the time we were looking at Froggie for assessment, we knew a fair bit about autism. We knew what we were looking at. There was no doubt in my mind, when we showed up for our panel assessment that my daughter was also autistic. A day or two afterwards when I got the phone call to tell me their diagnosis, I was sitting in my car - pulled over, excited, ready for that long awaited good news. Nope.
"She ticks a lot of boxes, and we all agree that there is probably something there. But she just doesn't tick enough boxes yet. We want to recommend that you have her tested again when she's about 8 years old and having real problems. It might be easier to see then and she's likely to tick more boxes by then."
ARE YOU KIDDING ME!?!?!?!? To me, that was "your daughter is autistic but because our list isn't up to scratch you'll have to muddle through on your own until she's really struggling in a few years time, then try this process again. At which point it will be too late for Early Intervention".
No. Not good enough. I cried a bit, but mostly I just got really angry.
Fuck that. (I'm going to swear - a lot) FUCK THAT!!!!
Even my husband, who had no real interest or knowledge of autism until Ratbag was diagnosed, was convinced our girl was also 'on the spectrum'. We agreed that it was worth the money, to us, to have her seen privately by a psychologist for diagnosis.
It was expensive, and again came with a waiting list and so much time and paperwork, but if she did have autism or any other issue that could be helped by Early Intervention, we wanted to get onto it - she was already struggling with so many things that the idea of her starting primary school without a formal diagnosis and a plan was not going to fly.
I specifically sought out a specialist with experience with girls on the spectrum as well as very young girls both autistic and not. I made notes, much more detailed than for Ratbag, of any possible weirdness she had. I took videos of her meltdowns. And I told myself that I can do this. I was not letting this thing go without a diagnosis or a good reason for a non-diagnosis. If I heard 'she doesn't tick enough boxes... yet', again, I was going to LOOSE MY SHIT. If they cannot tell me why she's not autistic I would carry on as we were as though she is, doing what I can on my own until she has REAL problems and we could try again.
We had an hour session with my husband and I and the psychologist first to plead our case, followed the next two days by one on one visits (2 hours and 1 hour) with Froggie and the Doc for observation and assessment.
Fortunately, for all involved, the psychologist DID see it. It was as plain as the nose on her face. Froggie is blonde haired, blue eyed, and autistic. The psychologist was appalled at our experience with the community health panel and commended us on taking it further.
Another thing many people struggle with is 'diagnosis disclosure'. For us, this was not a problem. In preparing for the diagnostic process, we told each of them that they are meeting with some doctors and very smart people who want to know all about Ratbag/Froggie. We told them to just do as they're told and that there are not wrong answers or wrong way to do something, just be honest and try your best. Mostly, they felt like they were playing games and had the full attention of at least one adult at all times. OMG do these kids love one on one attention with an adult!
When we received the formal diagnosis we told the child within a week.
For Ratbag, I borrowed a book from the library called "Making sense of Asperger's" (affiliate link), he read it with us and at the end of the book diagnosed himself. I agreed with him and then told him that the doctors and very smart people we saw recently think so too. And that was that.
By the time it was Froggie's turn she already knew all about Asperger's and knew that Ratbag and Daddy and a long list of other people she knows are all Aspies. She was ok, but not great with the news that she was just like them. She felt different. She struggled for a long time and even commented once that she wishes she could cut the Aspergers out of her brain 😞. Of course we talked to her about how amazing she is and how she is unique and special but it just wasn't enough. It was breaking my heart to see her so down on herself. This book changed it all. We read it together and on every page (EVERY SINGLE PAGE) she said "Oh Mum! That's just like me!" she was smiling, beaming! She took the book to school and had her teacher share it with the class so they could all know more about her and how special she is. Now she is a super proud Aspie Girl.
I have never regretted for one moment having my little weirdos diagnosed OR telling the about it, even at such a young age. They are both fully informed about themselves and, I believe, it has helped them to be more understanding of themselves and of others.
There is always more to discuss, please leave a comment or contact me if you have any particular topics you'd like to read about, or any questions I might be able to have a crack at answering.
xx Lauren
As always, this is about MY experience, I have no idea if the process has changed (I doubt it) and I'm unsure of how other methods of seeking a diagnosis work, but I'll do my best to give you a bit of a guide.
Firstly, I'm often asked why get a diagnosis at all. There isn't really a simple answer here, but as I like simplicity when I can manage it my basic answer is that the label is important.
Yes, I know, we're not supposed to pigeon hole people. We're told that labeling our kids is wrong. "If you tell them they're XYZ they'll always be/rebel against being XYZ."
In my experience that all depends on how you use the label. I think I'll come back to the topic of labels another time - I feel a rant coming on, so I'll just put a pin in that.
The Diagnostic Process!
I've told you about calling the local community health centre for help with Ratbag (that's another label that can be seen as wrong - oh well) in my last post. Once I'd decided that I wanted to seek help I just followed my nose.
Ratbag was relatively straight forward:
- Fill in the forms (community health provided these and took them away to process),
- Wait for a phone call to book our appointments (I don't recall how long exactly but the wait in our area was an average of something like 10-13 months at the time), leading up to the appointments I tried to jot down notes on his behaviour I thought might be relevant.
- 2 days of appointments with Ratbag and a panel of specialists, Pediatrician, Speech Therapist, Occupational Therapist, and Psychologist. They each had an hour or two with us. We went through EVERYTHING. EV-ER-RY-THING. Milestones, strengths and weaknesses, worries, patterns, moods, food, clothing, memories, family. We picked apart every aspect of his short life to date for analysis.
- I filled in so many long questionnaires (pre-school did one for us too).
A day or two later I received a phone call, the panel had compared notes and reviewed the questionnaires and determined that my little man is indeed Autistic. "If he'd been diagnosed a year or so sooner it would be called 'Asperger's Syndrome'" the Pediatrician told me.
I WAS SO HAPPY!
I wanted to tell everyone.
I remember calling my Dad, I hadn't even considered that it might be something to be sad about until I heard confusion in his voice.
I explained why I felt that this was such a positive thing. How hard it had been feeling like I couldn't help my child and knowing there must be something more to it. And now we know! I was RIGHT! I'm NOT CRAZY! It's not bad parenting! It's not my fault that all the advice hadn't worked for us! There's nothing wrong with him or me, we just didn't have all the information... and now we DO! AUTISM!!!! Oh My Gawd! WOOOOOOOOOOOOOOO!!!!!!!
Then Dad said "We should have know." and recounted the time he really came to see his grandson was a bit odd. We'd been having a family dinner. Ratbag must have been 4 years old. As we were eating, there was a lull in conversation and the boy looked up, scanned across the faces of three generations of his closest family members and remarked "One day you'll all be dead." and returned to his meal.
We were all left a bit gobsmacked. He said is so matter-of-factly, not with malice, or dread, or remorse. It was simply a fact that he'd thought of and voiced it out loud.
I'd completely forgotten about that until Dad brought it up.
We should have know.
From there I was given the phone number for Aspect Australia, who in turn sent me some more forms to fill in - if you haven't picked up on it yet and are considering diagnosis, there are a LOT of forms in your future, soz bro - and put me in touch with government funding and an Early Intervention Specialist. I'm not going to say this was a fun or simple process, but compared to others, it was easy.
However, when it came to having my daughter assessed, it's a very different story.
The problem with the standardised tests for autism that the community health system are required to use, is that they are somewhat out-dated and do not account for the way autism presents in some people - typically, but not exclusively, in girls. I will get to my musings on the matter eventually, but in the mean time sink you teeth into the wonderful world of ASD girls here, here, or here.
By the time we were looking at Froggie for assessment, we knew a fair bit about autism. We knew what we were looking at. There was no doubt in my mind, when we showed up for our panel assessment that my daughter was also autistic. A day or two afterwards when I got the phone call to tell me their diagnosis, I was sitting in my car - pulled over, excited, ready for that long awaited good news. Nope.
"She ticks a lot of boxes, and we all agree that there is probably something there. But she just doesn't tick enough boxes yet. We want to recommend that you have her tested again when she's about 8 years old and having real problems. It might be easier to see then and she's likely to tick more boxes by then."
ARE YOU KIDDING ME!?!?!?!? To me, that was "your daughter is autistic but because our list isn't up to scratch you'll have to muddle through on your own until she's really struggling in a few years time, then try this process again. At which point it will be too late for Early Intervention".
No. Not good enough. I cried a bit, but mostly I just got really angry.
Fuck that. (I'm going to swear - a lot) FUCK THAT!!!!
Even my husband, who had no real interest or knowledge of autism until Ratbag was diagnosed, was convinced our girl was also 'on the spectrum'. We agreed that it was worth the money, to us, to have her seen privately by a psychologist for diagnosis.
It was expensive, and again came with a waiting list and so much time and paperwork, but if she did have autism or any other issue that could be helped by Early Intervention, we wanted to get onto it - she was already struggling with so many things that the idea of her starting primary school without a formal diagnosis and a plan was not going to fly.
I specifically sought out a specialist with experience with girls on the spectrum as well as very young girls both autistic and not. I made notes, much more detailed than for Ratbag, of any possible weirdness she had. I took videos of her meltdowns. And I told myself that I can do this. I was not letting this thing go without a diagnosis or a good reason for a non-diagnosis. If I heard 'she doesn't tick enough boxes... yet', again, I was going to LOOSE MY SHIT. If they cannot tell me why she's not autistic I would carry on as we were as though she is, doing what I can on my own until she has REAL problems and we could try again.
We had an hour session with my husband and I and the psychologist first to plead our case, followed the next two days by one on one visits (2 hours and 1 hour) with Froggie and the Doc for observation and assessment.
Fortunately, for all involved, the psychologist DID see it. It was as plain as the nose on her face. Froggie is blonde haired, blue eyed, and autistic. The psychologist was appalled at our experience with the community health panel and commended us on taking it further.
Another thing many people struggle with is 'diagnosis disclosure'. For us, this was not a problem. In preparing for the diagnostic process, we told each of them that they are meeting with some doctors and very smart people who want to know all about Ratbag/Froggie. We told them to just do as they're told and that there are not wrong answers or wrong way to do something, just be honest and try your best. Mostly, they felt like they were playing games and had the full attention of at least one adult at all times. OMG do these kids love one on one attention with an adult!
When we received the formal diagnosis we told the child within a week.
For Ratbag, I borrowed a book from the library called "Making sense of Asperger's" (affiliate link), he read it with us and at the end of the book diagnosed himself. I agreed with him and then told him that the doctors and very smart people we saw recently think so too. And that was that.
By the time it was Froggie's turn she already knew all about Asperger's and knew that Ratbag and Daddy and a long list of other people she knows are all Aspies. She was ok, but not great with the news that she was just like them. She felt different. She struggled for a long time and even commented once that she wishes she could cut the Aspergers out of her brain 😞. Of course we talked to her about how amazing she is and how she is unique and special but it just wasn't enough. It was breaking my heart to see her so down on herself. This book changed it all. We read it together and on every page (EVERY SINGLE PAGE) she said "Oh Mum! That's just like me!" she was smiling, beaming! She took the book to school and had her teacher share it with the class so they could all know more about her and how special she is. Now she is a super proud Aspie Girl.
I have never regretted for one moment having my little weirdos diagnosed OR telling the about it, even at such a young age. They are both fully informed about themselves and, I believe, it has helped them to be more understanding of themselves and of others.
There is always more to discuss, please leave a comment or contact me if you have any particular topics you'd like to read about, or any questions I might be able to have a crack at answering.
xx Lauren
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