Ok so I know this is a topic that will elicit strong opinions, so if you don't have any relevant personal experience and just want to go on some tirade about your opinions on Autism, no matter which camp you are in, don't. My personal life is not your platform.
My pre-teen child was diagnosed at 3 years old, his diagnosis was Autism level 3 (that's the diagnosis so don't come at me about using levels) and GDD. Which then become ID at 5 years old.
He attends a specialist school and did have NDIS until he was about 8, there was nothing beyond his school really needed at that point, I know it may change as he gets older but for now he is settled in school and at home and we don't have anything we need NDIS for.
And that kind of brings me to my point, I've always thought his biggest barriers (I guess that's the word) are his ID, I mean he is an amazing beautiful boy who is smart in his own way but he does clearly have struggles that come with ID.
I'm just really not sure he is actually Autistic, I know they say that a lot of the "typical" Autistic behaviours are Autistic people in distress, and my son and I have created a pretty easy co-habitation that doesn't cause him distress.
But still beyond his delays and intellectual disability he doesn't display any "typical" Autistic behaviours, his speech is delayed but he will chat away to anyone, he doesn't avoid eye contact, doesn't sensory seek or avoid, his is an easy kid, helpful, kind, polite, does his chores, he has absolutely zero behavioural challenges.(and just to cover my bases obviously I'm not saying no Autistic child is kind, polite etc. I'm just describing my son). (Oh and yes I said his speech is delayed but he communicates clearly and did many years of speech therapy so no "then why isn't he in speech therapy" etc. You don't know us or every detail of our lives from one post).
Is it worth questioning his diagnosis or do I just let sleeping dogs lie, as he doesn't receive any funding for his disability and his school is IQ based so absolutely nothing would change.
Or maybe I'm just so familiar with him I don't see what others see, we have never had anyone, no therapist or teacher question the diagnosis, he was diagnosed by speech, OT and paediatrician but he had just turned 3 at the time and has obviously grown and changed a lot since then.
He was diagnosed very young, he was severely delayed in all areas, so getting a diagnosis was the right thing to do and I'd never question his ID diagnosis. Just now he is older I question the Autism part.
Sorry about all my little notes I just know the internet so trying to clarify anything someone can jump on and take the wrong way without all the detail, then my post ends up been about how I said my son was polite so I don't think Autistic kids can be polite etc. rather then the actual point of the post, seen it happen a lot.
8 Replies
Only you know if it's a suitable idea, but if it bothers you, and you can afford a reassessment then there's no harm. You could be right. Gut feelings about this often are.
I couple of things I learned while getting my DS diagnosed L2 & since then....
- Assessors amplify symptoms to get a higher level diagnosis to get NDIS. If I'm honest, my DS is L1, but was pushed into L2. Diagnosing psych told us to be as negative as possible, rather than honest. It comes from a good place, to ensure we got help. We did. And yes, DS needed it. The issue was the threshold. He barely uses it at 13 now & was diagnosed at 6. I expect we'll get kicked off shortly.
- Not all autistic people display classic symptoms. DS didn't / doesn't display most. 'If you've met one autistic person, you've met one autistic person ' is the motto we keep hearing.
- ignore the conspiracy theorists & opinions. Dear god, the things I've been told, or judged for.
- 3 is very young for a diagnosis. Perhaps it is time to re-check.
Whatever you decide, it's just a diagnosis, not who he is!
he was diagnosed very young, now he is older, why not get a more accurate assessment?
they def could have got it wrong.
good luck, your son sounds lovely x
also, if i had a wrong diagnosis, i wouldn't want to carry that around all my life.
better to determine now i think.
we all deserve a correct diagnosis of our conditions.
Hi. What's GDD and ID?
Global developmental delay and intellectual disability
Part of reason I didn't explain that is because if someone doesn't know then they don't have the relevant experience to answer my question.
You can look at a reassessment if you genuinely want to know but it may just confirm what you already know.
Diagnosis could definitely be incorrect because at that age so much information is gathered from the parents around development. It's possible the ID was more prominent in causing the symptomology.
However, as we age, many of us improve at masking as well. This is why so many females go undiagnosed for Autism as we are better at learning how to act. It's harder to detect.
I think the greatest thing I am getting from your post is the massive gains your son has made with the supports he has had. Truly lovely to read 💗
There's no "just" in confirming a wrong diagnosis, your post comes across extremely condescending.
How would you like to carry around an incorrect label your entire life?
Later in life he made need more support and may receive the wrong assistance, due to his medical history.
If it was a physical and visible condition (like CerPal/SpiBif/MS), I'm sure your answer would be very different.
ND/invisible disabilities deserve the same care in determining treatment and diagnosis as everyone else.