Originally Posted by Linda on the move
Coming late to the party ....
This is an excellent thread. it's a good question and there have been some super responses already. My DD just turned 16 and is on the spectrum, and very high functioning. It is super tough to dx children like her, and I felt we got a better picture of what was going on as she got older, was better able to comply with testing, and was observed for more time by a wider range of people, such as happens at school.
None the less, I'm still a fan of getting evals when children are young to help hone in on what might help them. It's not perfect, but its the best we can do right now. I see getting an eval as a bit like getting a picture taken -- it kinda shows you want the child looks like now, but you don't expect it to tell you what they will look like in 5 years.
Anyway, back to specifics:
I suggest completely framing how you think about this. You did not have your child diagnosed. You had your child EVALUATED. You did not give your child a label. You were open to allowing expects to figure that out and make their best guess based on how he presents right now.
It is your choice what to do with that information and who to share it with. Not everyone who comes in contact with my DD knows -- it really just depends on the situation and what I feel people need to know. But her teachers and the staff at her school know. She could not get through regular school with regular expectations. That would be completely unreasonable. But she is a bright kid getting a solid education that works for her, and it's only possible because we are honest with ourselves and honest with her teachers.
A couple of things about having a 4 year old -- other people's suggestions that my DD's struggles were my fault peaked at about this age. I don't know if it is something about the age, or if I just got thicken skin later and didn't notice so much.
When you say "I'm labeling just a 'high needs' child with Autism." it kinda sounds like you might be judging yourself a bit or thinking that you are overshooting. There's no way to know over the internet, but I suspect that isn't true. It sounds like normal parenting techniques just don't have much of an impact. I suspect that you are a really good mom, seeking out a variety of opinions and options for your child, trying to find something that works for him. I don't think it serves special needs children well, even if they are high functioning, to assume that their challenges are mostly because they are difficult. That kind of thinking would never help a parent get to root causes.
Hi, Linda on the move,
You're pretty spot on with much of what you wrote about here. I certainly judge myself a lot, and am frequently worried about 'overshooting'. It took months of stress for me to decide to go for the assessment in the first place. I even cancelled the original appointment. It was only because the feeling never went away, no matter how much I reasoned otherwise. I just *knew*.
Having other people doubt me always throws me much more than I would like. And this situation was exactly the same. I know the this guy wasn't exactly making an informed judgement, having only spent 1 hour watching my child interact with me (but doing no interaction himself)
Also, it's really helpful for me to hear from others about the judgement people had regarding your parenting, supposedly, causing certain, behaviours, I guess you could call it. I know it doesn't matter what others think. But it's hard, as a mother, to have people telling me I don't know my child.
Originally Posted by Emmeline II
When ds was in K we started seeing a family therapist who wanted to play "wait and see" and discourage us from seeing a psychologist or psychiatrist. Had an evaluation with an OT who worked with ASD children and suggested we might want to evaluated for it and explained why (we were already on that path). Then saw a psychiatrist who diagnosed ADHD but not concerned about Asperger's. Several months later ds had a comprehensive evaluation at a developmental clinic at a children's hospital that involved a developmental-behavioral pediatrician, an SLP, a psychologist, and a social worker; plus the teacher bubble forms, parent bubble forms, teacher evals we had done for a therapist, and a 3hr eval with ds AND more bubble forms and interviews. Apparently the team spent quite a bit of time debating the ASD diagnosis.
The point of all of that was to get a better idea of what was going on with ds and to help him--I certainly hoped he would improve between 6y11mo and today! He's always been "better" with me than anyone else. His Nana was next on the list after us, then his primary teacher; but it took 2yrs past his diagnosis for him to make eye contact with his Aunt he saw a little less often then Nana. If he didn't know you at all you probably wouldn't get any response.
See, for my DS. Up until recently, he rarely spoke a word to anyone but me. He did speak to his Dad too, but there were a lot of variables (wouldn't speak first thing in the morning, or having just arrived home etc)
This has improved dramatically. Where now he talks and plays with most of my immediate family, and some friends.
Sometimes I feel as though he doesn't 'fill all the boxes' for Autism anymore. But then there are still so many things that tell me he is. Sometimes I just find it so damn confusing when everyone has a different opinion about what Autism is. Does having Autism mean being unable to do these things, or just having difficulty. And then, how much difficulty? If DS has no 'issues' half the time, but lots the other half, where does that leave us?
Originally Posted by crunchy_mommy
HUGS. I am dealing with the exact same thing, therapist said he most definitely doesn't have an ASD (after spending less than 2 hours with him, and him having a really great day & under ideal conditions for him). On the one hand, it's just a label, does it really matter? But it's confusing -- not to mention invalidating -- and leaves me uncertain how to proceed. Plus I had just undergone a bit of a grieving process in accepting that DS does have Asperger's, and then just a couple weeks later I am told he does not!
DS is 3.5. He fits virtually every single symptom, but some of it is only evident under certain conditions, or if you are around him enough to really see what's going on. He's incredibly smart and compensates/hides issues pretty well, I think. Bottom line, though, is I'm grateful we have OK insurance so we can get therapy either way, and that we're homeschooling, because it seems a nightmare to get 2 people to agree on a diagnosis for him if it were absolutely necessary for services. *sigh* I am sorry you are dealing with this too, I guess we just have to keep plugging away and advocating for what they need. We are supposed to have a neuropsych eval done for DS, it's a 5-hour comprehensive test, I'm hoping that will provide more definitive insight... are you able to do something like that?
So far we have done an hour long eval with a Dev. Ped. And hour with a Psych. And two hours with a Speech Path, who each agreed on the same. I know these people are hugely respected in the field of Autism, and I do think they know what they're talking about. I guess it just through me an awful lot to have another person (who was actually recommended by two of the professionals who did the assessment. It makes me question what exactly Autism is. I've done so much reading. I feel incredibly informed, and yet I still don't quite 'get it'. With DS, the reason I chose to go through the assessment, was more of a feeling, which was backed by additional, symptoms, I guess you might call it. The connection isn't quite right. I'm rambling now, sorry. Still trying to figure it all out.
Thank you, all, again for responding. It's nice to have people who get what you're going through.