TheBoyHasArrived
New Member
So, we've known since Kiddo was evaluated the first time that he will probably "lose" his Autism Spectrum Disorders (ASD) diagnosis when he is re-evaluated. I'm not sure how that works, but the psychiatric told us that he met the criteria at that time...but he was only 4 months post-institutional. I accepted the diagnosis, because it really doesn't matter to me what they called him if it gave him access to services.
What I didn't expect is that all it's given him access to is a couple of hours of ABA per week (which does nothing for him right now). Our county does nothing in terms of services for children if they're served by the public school system and our school doesn't have anything geared toward kids with Autism Spectrum Disorders (ASD) anyways. But, every time I turn around, he's being "pigeon-holed." I'm so frustrated with being told, "well, autistic kids do _______" and "that's to be expected with a child with autism."
He will go 3 weeks with pretty typical behavior, minimal stimming and behavior and then CRASH for 3 or 4 days--"Well, that's common in kids with Autism Spectrum Disorders (ASD)." Except that I work with kids with autism every day, and this is NOT normal. The last straw is that Kiddo has been crossing his eyes...everyone thinks it's a stimulant and totally "normal" for a kid with Autism Spectrum Disorders (ASD). And, it could be...but from watching him, it just doesn't look right. It doesn't always look voluntary, and his eyes aren't focusing typically even when he's not crossing them. But, it's because he is autistic and no one wants to even look at him. I had to fight for an appointment with the psychiatrist.
I feel like the diagnosis is hurting him more than it's helping at this point, but he may lose his MR diagnosis at the next evaluation too. I think he really needs access to programs targeting learning disabilities--touch math, Wilson Reading, etc., and I think he has a much better chance at the school agreeing if they are told that his issues AREN'T caused by Autism Spectrum Disorders (ASD) or MR. Side Note: There's a school for kids with Learning Disability (LD) that will only accept him if his IQ is typical, but that isn't an issue until 5th grade.
So...he doesn't HAVE to be re-evaluated for 2 more years. The psychologist recommended re-evaluation next month, because she doesn't think he will meet criteria for Autism Spectrum Disorders (ASD) or MR. I'm torn...the diagnosis aren't helping right now, and he'll lose them way before he'll have access to adult services (Kiddo is only 6 now) anyways--unless I find a doctor who knows nothing about PI kids, and then maybe he'll keep the diagnosis. And, of course I'm curious as to "where" he is now.
What am I not considering? Should I just let it ride? I'm so tired of doctors, teachers, therapists...telling me that Kiddo is doing things because he's Autism Spectrum Disorders (ASD) rather than looking deeper into the issue.
What I didn't expect is that all it's given him access to is a couple of hours of ABA per week (which does nothing for him right now). Our county does nothing in terms of services for children if they're served by the public school system and our school doesn't have anything geared toward kids with Autism Spectrum Disorders (ASD) anyways. But, every time I turn around, he's being "pigeon-holed." I'm so frustrated with being told, "well, autistic kids do _______" and "that's to be expected with a child with autism."
He will go 3 weeks with pretty typical behavior, minimal stimming and behavior and then CRASH for 3 or 4 days--"Well, that's common in kids with Autism Spectrum Disorders (ASD)." Except that I work with kids with autism every day, and this is NOT normal. The last straw is that Kiddo has been crossing his eyes...everyone thinks it's a stimulant and totally "normal" for a kid with Autism Spectrum Disorders (ASD). And, it could be...but from watching him, it just doesn't look right. It doesn't always look voluntary, and his eyes aren't focusing typically even when he's not crossing them. But, it's because he is autistic and no one wants to even look at him. I had to fight for an appointment with the psychiatrist.
I feel like the diagnosis is hurting him more than it's helping at this point, but he may lose his MR diagnosis at the next evaluation too. I think he really needs access to programs targeting learning disabilities--touch math, Wilson Reading, etc., and I think he has a much better chance at the school agreeing if they are told that his issues AREN'T caused by Autism Spectrum Disorders (ASD) or MR. Side Note: There's a school for kids with Learning Disability (LD) that will only accept him if his IQ is typical, but that isn't an issue until 5th grade.
So...he doesn't HAVE to be re-evaluated for 2 more years. The psychologist recommended re-evaluation next month, because she doesn't think he will meet criteria for Autism Spectrum Disorders (ASD) or MR. I'm torn...the diagnosis aren't helping right now, and he'll lose them way before he'll have access to adult services (Kiddo is only 6 now) anyways--unless I find a doctor who knows nothing about PI kids, and then maybe he'll keep the diagnosis. And, of course I'm curious as to "where" he is now.
What am I not considering? Should I just let it ride? I'm so tired of doctors, teachers, therapists...telling me that Kiddo is doing things because he's Autism Spectrum Disorders (ASD) rather than looking deeper into the issue.