parents overpushed to 'accept' diagnosis?

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AardvarkGoodSwimmer
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04 Jan 2017, 6:22 pm

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https://ssadisabilityandyou.wordpress.c ... you-it-is/

" . . . Each time I brought up the DSM IV definition, each time I brought up something that pointed away from Autism, the push was on to just make me accept the diagnosis. Even in the online support groups I had found, I was pushed and pressured to just accept the diagnosis and stop fighting it. His first school district told us that he was mentally retarded, could never been mainstreamed, and that we should prepare to take care of him for the rest of his life. . . "


And notice the school district is already angling to reduce workload on themselves.

I'm not a parent, but I'm happy to pass on potentially good material when I find it. :D



AardvarkGoodSwimmer
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04 Jan 2017, 6:30 pm

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" . . . Around the age of 4 I stumbled upon a condition called CAPD (central auditory processing disorder). What I saw described my son perfectly. It made sense. His IEP team in kindy disagreed with me. They refused to perform the evaluation, stating that it was highly unlikely that my child had an auditory processing problem, your child is autistic. This was even after we had a full neuropysch evaluation which had already ruled out autism. . . "


More angling on part of the school district to reduce workload.



AardvarkGoodSwimmer
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04 Jan 2017, 6:37 pm

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" . . . after my son’s 6th birthday we had a CAPD evaluation done on him. The results were exactly as we expected. My child’s short term auditory memory was so poor that he could only hold a few syllables at a time. The audiologist explained that this is why he repeats things over and over. It is the only way to hold the language long enough to work through the short term memory and get it processed. During the evaluation I noticed that the audiologist held a screen over her mouth. When I asked why, she explained that many children with CAPD lip read. Since they are trying to read lips, they tend to not make eye contact. His ability to hear with 10 decibels of background noise was impaired. In one ear he heard 40% of the words said, in the other ear he heard 48%. The numbers add up. In a 10 word sentence spoke to my child in the classroom, he would only hear 4-5 words of it and his auditory memory would only allow him to remember and process 1 or 2 of those words. . . "

Sounds similar to some cases of autism, but different, more specific. Hearing problems, plus a considerably smaller than average short-term auditory working memory.



BuyerBeware
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05 Jan 2017, 12:22 pm

I believe that, and it infuriates me.

I hate hearing professionals disregard the parents' observations and concerns. I think it's sick that so many people who are supposed to be helping cram diagnoses and predetermined limitations down people's throats. In any case, but especially in the case of one so young.


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Tawaki
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05 Jan 2017, 1:33 pm

Wow! Parents pushed to accept an ASD diagnosis, that's different.

Where I live, everyone will do anything not to pin an ASD diagnosis down. The parent suspect autism, and this is how it shakes out...

If the kid is little, it was be PDD. Now it's sensory processing disorder.
Around age 6-ish, it's he/she has ADHD and/or crappy parenting.
Around 8-ish it's ADHD/ODD/GAD and/or crappy parenting

The reason being, all those diagnosis get chucked under Otherwise Health Impaired and maybe a 504 plan. It is literally impossible to get an IEP around here. Less money can be spent on services.

3rd grade is when Aspergers/Autism gets brought up. School districts hate it as Federal laws are behind it, and they can't play fast and loose with the services.

Obviously if the child is level III, no one is going to say he/she is fine. It's the kids who at level I autism who have trouble receiving help. Everyone hopes the child "will out grow/catch up" with the rest of the class.



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07 Jan 2017, 10:57 pm

You know. This is, in my opinion, a really great example of how anyone can post anything on the internet. Doesn't really mean that it's true. I could post a blog about my autism being all defined by purple bunny rabbits. Maybe someone would run with that. The internet is like the wild west of information.

I have CAPD. I am on the spectrum. I lot of people on the spectrum have this. Having auditory delays doesn't count against ASD diagnosis, it counts towards it. And no (ROFL) we are not all magic lip readers who never look at people in the eyes because we are so fixated on their lips. That's just a blatant misinterpretation of the facts of CAPD. We do put more emphasis on visual cues around language. I'm a context-clue master, which means I'm screwed if I don't get the context correctly. But that doesn't mean that we are so busy following lips we can't look you in the eye. In fact, if his deficit is severe, he's less likely to connect those lip movements with sounds. I had to be taught how words FEEL. (That was a hell of a great day. Changed my life for the better, but that's another story.)

A LOT of autistic people snuggly. There is one group of autstics who don't like to be held or touched. But I don't know if they are even 50% of us. Most of us don't like being touched by strangers or when we are focusing on something else. Maybe that's where it comes from? I mean, there are many autistic people who hate being touched under any circumstances. I won't deny that. But it's not even close to everyone. A lot of kids use their parents as a giant sensory toy, asking for hugs and kisses to try to moderate their nervous system like a living weighted blanket. (Same as with typical kiddos, but with more intensity.)

Teaching yourself to read at the age of two is the very definition of hyperlexia. It's also highly unlikely for someone who only has CAPD. People with CAPD as a primary diagnosis tend to have a hard time learning to read. I'm a great reader - one of the big signs that more is going on with me than an auditory challenge. In this case, and in the case of the young boy referred to in this blog, the ASD is more indicative of our strengths in visual processing, relative to auditory processing.

I don't doubt that somewhere, someone has been pressured to see their kiddo as autistic, when he or she really isn't. I bet there are lots of cases like this out there. But the blog writer in question doesn't seem to be one of those. She seems to be describing a pretty clearly aspergian kiddo emerging from babyhood.



somanyspoons
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07 Jan 2017, 11:04 pm

AardvarkGoodSwimmer wrote:
Quote:

https://ssadisabilityandyou.wordpress.c ... you-it-is/

" . . . Around the age of 4 I stumbled upon a condition called CAPD (central auditory processing disorder). What I saw described my son perfectly. It made sense. His IEP team in kindy disagreed with me. They refused to perform the evaluation, stating that it was highly unlikely that my child had an auditory processing problem, your child is autistic. This was even after we had a full neuropysch evaluation which had already ruled out autism. . . "


More angling on part of the school district to reduce workload.


That's completely illogical. CAPD warrents WAY fewer resources than autism. Autism is way more expensive, requiring hours of specialized therapies and social services. CAPD only gets a 504, unless specific learning disabilities show up. Basically, you have to be 2 grade levels below your peers, or you get nothing but preferred seating and a note taker in upper grades.

You aren't under the impression that the school could provide therapy specific to CAPD, are you? We don't even have therapies for CAPD that are proven and accepted. There are some computer programs that say they help. And some reading programs. (most people with a CAPD dx struggle with reading.) The best the school would do with that diagnosis is provide resource room help. The child wouldn't qualify for lots of services with that dx alone.



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07 Jan 2017, 11:53 pm

TBH it all comes off as denial to me. "I don't want to have an autistic child so I am going to find other reasons and excuses for why he isn't autistic." Oh he isn't autistic because he likes to be hugged and will sit on my lap for hours. That comes off as denial. Look for other stereotypes your kid lacks and say it's not autism. So she keeps looking for a doctor until she finds one that agrees with her. Now if it had only been the schools that were saying her son is autistic and none of the doctors were saying it, then that would be a different story. But in other word the mother could be right and I am sure there are kids out there who are not autistic and the parents are truly right. The mother in the article did say his "symptoms" disappeared when put in a quiet area when given instructions. But then again isn't CAPD part of autism? Lot of autistic people have a hard time hearing things in loud environments. Can you have CAPD and not have autism, of course. Just like you can have Dyspraxia and not be autistic or have sensory processing disorder and not be autistic or have a language impairment and not be autistic or have a hard time reading social cues and not be autistic. It's a matter of having enough components to have autism. But it's a matter of what comes first and what is causing the symptoms.

Even my son's doctor said that we all want our kids to be normal so we will find excuses and even blame ourselves for how our kids behave. My therapist told me the same too in high school. I can remember him laughing when I told him the only reason why I had troubles figuring out how ti act and what the rules were was because I was in that classroom when I was six and seven and kids acted different in there. he said "Parents like to blame their kids behavior on other things" implying that my mother was just finding excuses for my problems by blaming it on the environment.

Even some people do it to themselves. They also don't want to have autism so they will also find excuses like blame it on abuse they were given by their peers, their dad had poor social skills, they often got in trouble for their feelings, no one wanted to play with them, they moved too much. And ironically my mom told me one time that some people will find excuses for why they had social issues as children such as they moved around too much. But yet she has probably done that about me.


My son also has educational autism. I have accepted that category they decided to use for him regarding his learning and language delay and social issues he was having in school. But my mom was against it and then accepted it when my son's doctor told us to stick with the school diagnoses and she doesn't think it will be a problem because the teachers would see him and know him and see what he can do. But the mother in the article seems stubborn about it and won't just accept it and move on and I can't understand the problem. It's just a label. Sometimes it is just a label. The whole point of it is for funding so the school gets ore funding to help the child. Schools get more funding from the state when the child has the label of autism even educational. But some people get so caught up in a diagnoses they want exact labels for the child that fits them perfectly and sometimes there is nothing that fits a child perfectly so the doctor has to go with what fits them the closest for the sake of getting them the help they need.


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Tawaki
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08 Jan 2017, 10:38 am

somanyspoons wrote:
AardvarkGoodSwimmer wrote:
Quote:

https://ssadisabilityandyou.wordpress.c ... you-it-is/

" . . . Around the age of 4 I stumbled upon a condition called CAPD (central auditory processing disorder). What I saw described my son perfectly. It made sense. His IEP team in kindy disagreed with me. They refused to perform the evaluation, stating that it was highly unlikely that my child had an auditory processing problem, your child is autistic. This was even after we had a full neuropysch evaluation which had already ruled out autism. . . "


More angling on part of the school district to reduce workload.


That's completely illogical. CAPD warrents WAY fewer resources than autism. Autism is way more expensive, requiring hours of specialized therapies and social services. CAPD only gets a 504, unless specific learning disabilities show up. Basically, you have to be 2 grade levels below your peers, or you get nothing but preferred seating and a note taker in upper grades.

You aren't under the impression that the school could provide therapy specific to CAPD, are you? We don't even have therapies for CAPD that are proven and accepted. There are some computer programs that say they help. And some reading programs. (most people with a CAPD dx struggle with reading.) The best the school would do with that diagnosis is provide resource room help. The child wouldn't qualify for lots of services with that dx alone.


My district would have kissed you on the lips for fighting for a less restrictive status. CAPD would only get a resource room here, and that is if your child was the lowest of the low for children who qualify. MAYBE some sort of half assed behavioral plan which no one would follow.

Since my district has given all kids an iPad, CAPD wouldn't even qualify for a note taker.

All the social behavior problems would get tossed under "kid has a crappy/psycho parent" category. It would be sticker charts and sent to the office when s**t unravels.

As a parent you have the legal right to drop an IEP. I don't get what the issue is. You ask for all support to be removed.

CAPD sounds like what a child with Dyslexia would get help wise. Basically nothing. Not two grades below learning wise? No soup for you! (channeling Seinfeld's Soup Nazi).

I see no up side for a CAPD diagnosis only, if the child also has ASD.



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08 Jan 2017, 12:55 pm

OK. Full disclosure. I'm almost 42. Aspergers wasn't a thing when I was a kid. My only dx was CAPD. And yes, what Tawaki was saying is true. It was a suck deal.

The real problem for me was that I improved my skills so quickly when they moved me to a resource room. It was hard to keep me because of that 2 grade level requirement. In third grade, they gave me services for dyscalcula, and moved me to a private room for lessons. I moved from a k level math level to a 4th grade math level in one year. They had no choice to dismiss me. But everyone knew that I really needed more help. School was a torture chamber of horrors for me. And the teachers weren't any happier about it than I was. I needed the help we give aspies today, but that didn't exist back then. And they had no way of defining twice exceptional kids, like me, who are both disabled and intellectually gifted.



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08 Jan 2017, 3:36 pm

Yeah, it came off as denial to me too. It looks to be like they've found a bunch of different diagnoses that each describe difficulties which as a whole would describe autism. Though I suppose in some cases, it's possible to have them all but not autism.

Most CAPD support is advised for autistic kids anyway.

I had to chuckle when they used their child hugging as an example of 'not autism', though.


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League_Girl
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08 Jan 2017, 5:06 pm

ConceptuallyCurious wrote:

I had to chuckle when they used their child hugging as an example of 'not autism', though.



I didn't chuckle there, the words "denial" jumped out at me of that was her only reason for why her kid couldn't be autistic.


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