I'm In Tears

[Murmer]

4 weeks ago we say a neuropshyc that said he thought dd had high functioning autism.

 

Today I went to see our child development person who gave her the ADOS...although she hasn't scored it yet I asked what she thought...and she said she has no idea why the neuro said autism...dd is not autistic just very oppositional.

 

Although while testing she wouldn't play with the dolls...instead she played with the cushion from the chair, would not engage in the activity the Dr wanted. When the dr brought out a squeaking frog she covered her ears...then took the frog and squeaked it in her ear over and over and over again. When dr brought out a cylinder and said it can hop dd said no it can't it rolls. But she did do the birthday party part just fine because she is in love with birthdays...although she covered her ears during the singing, and stopped mid activity when she realized the eyes on the doll blinking and played with them for a bit...I was shocked...I had forgotten how repetitive and playing with parts of objects she still did...but the Dr said she was normal.

 

So I am now in tears because I feel like I am left with nothing once again. We are back at square one :(

[Paisley Hedgehog]

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[prissygirls]

I would seek out another doctor. Some doctor really do not understand autism and think of only the classic autistic characteristics. I would not even take the second doctors diag. seriously. You know your dd better than anyone. Maybe looking into a full autism screening from a local Easter Seals.

[Xanadu]

You may want to check into auditory processing disorders. (Central Auditory Processing Disorder) Everything you mention, especially the covering the ears at loud noises and then again with the signing are all typical of children with CAPD. So is the "la la land" type appearance of being in their own world sometimes, or blatantly refusing to cooperate (at least this is how it appears to us, to them they merely processed the request differently) I'm so not trying to diagnose here, but I had a son who they thought might be autistic, when that test failed, well then maybe asperger's....well it had to definately be ADHD...no wait maybe he's just defiant.....eventually testing diagnosed CAPD.

 

Your daughter may not be defiant, her brain may not be translating the oral requests into commands she can understand. Have you ever told her to go get her shoes and she brings you her socks? Can you give her a multi-step request that she completes correctly or do you have to ask her to do one thing at a time. Either of these scenarios are also typical of children with auditory processing disorders. But the hands over the ears in response to auditory stimulus that is too loud or confusing (singing) is VERY much a signifying factor of CAPD.

 

HTH....and big :grouphug:

[MamaSheep]

There is definitely a wide range of education about autism in the medical community. One thing to keep in mind is there actually is no definitive test that can be given that will return an actual reliable diagnosis of autism. There's no blood test, no genetic test, no nothing that definitively will say yes or no for autism. It's all a matter of opinion. So what you've got is one yes, and one no. A tie breaker might be helpful--or not, depending on the individual medical professional. I know, it's so FRUSTRATING!

 

From what you wrote I would say that whether she actually "has autism" or is "just very oppositional" the kinds of interventions and therapies that are used for autism would probably be helpful, and I would go with the professional who is most willing to help you get help. In the end, autism is just a label, and merely having "it" labeled, whatever "it" is that's going on with your daughter, isn't going to change anything. Labeling it might make it easier to get help, but the actual label itself changes nothing about your child one way or the other. So really, my advice is not to get hung up on whether she fits the label or not, just look into what might help. If the person who says she's "normal" thinks you don't need any help, and you feel like you're drowning (and I'm guessing you wouldn't be having the evals done if you felt like everything was under control), then go to the neuropsych who thinks she can be helped and ask what to do next. Go where the help is.

 

And :grouphug::grouphug::grouphug:

[akalori]

That does not sound oppositional to me. How can she venture an opinion without scoring the test? Did she tell you the score? Was it borderline? Perhaps she didn't administer it correctly.

 

Lori

[Misty]

It's not uncommon to encounter a doctor who does not see the autism in your child.. I had a doctor tell me that my oldest daughter didn't have Asperger's several years ago.. She actually has classic Asperger's as far as how it manifests in girls.. Every single symptom possible.. she has it. We finally got a proper diagnosis from a psych who knows how autism looks in girls.

 

I would take her to a different doctor.. You know your child and you know what she is dealing with.. Don't give up.

[Murmer]

There is definitely a wide range of education about autism in the medical community. One thing to keep in mind is there actually is no definitive test that can be given that will return an actual reliable diagnosis of autism. There's no blood test, no genetic test, no nothing that definitively will say yes or no for autism. It's all a matter of opinion. So what you've got is one yes, and one no. A tie breaker might be helpful--or not, depending on the individual medical professional. I know, it's so FRUSTRATING!

 

From what you wrote I would say that whether she actually "has autism" or is "just very oppositional" the kinds of interventions and therapies that are used for autism would probably be helpful, and I would go with the professional who is most willing to help you get help. In the end, autism is just a label, and merely having "it" labeled, whatever "it" is that's going on with your daughter, isn't going to change anything. Labeling it might make it easier to get help, but the actual label itself changes nothing about your child one way or the other. So really, my advice is not to get hung up on whether she fits the label or not, just look into what might help. If the person who says she's "normal" thinks you don't need any help, and you feel like you're drowning (and I'm guessing you wouldn't be having the evals done if you felt like everything was under control), then go to the neuropsych who thinks she can be helped and ask what to do next. Go where the help is.

 

And :grouphug::grouphug::grouphug:

 

Sadly we can't get any help unless she gets diagnosed with autism...we tried with ADHD but everything revolves around the diagnosis of autism. Also many people who meet my daughter and hear she has ADHD think she is a naughty child and refuse accomadations...but say autism and they jump with how to help. Its so frustrating...without a label I feel like I did before where I had no idea what to do that would help her because the normal stuff doesn't work, the ADHD stuff doesn't help her play with other kids...and so again we are left back at square one with what do we do with our little girl so that she can be the best she.

 

That does not sound oppositional to me. How can she venture an opinion without scoring the test? Did she tell you the score? Was it borderline? Perhaps she didn't administer it correctly.

 

Lori

 

I think she went in with the opinion dd didn't have autism...she has been working with dd for a year now and has never felt she had autism...but this doctor also doesn't believe in sensory processing disorder. I don't know about administer it correctly because I don't know how it was suppose to be administered, what it was testing or how the scores are determined. I think she will be scoring it to her view that dd doesn't have autism rather than being truly objective...I almost wish the person who did the test had never met my child and could be truly objective.

[Murmer]

It's not uncommon to encounter a doctor who does not see the autism in your child.. I had a doctor tell me that my oldest daughter didn't have Asperger's several years ago.. She actually has classic Asperger's as far as how it manifests in girls.. Every single symptom possible.. she has it. We finally got a proper diagnosis from a psych who knows how autism looks in girls.

 

I would take her to a different doctor.. You know your child and you know what she is dealing with.. Don't give up.

 

I don't know where else to go out here...and I get really stressed out...I consistently feel like people are going to tell me I am nuts my child is normal...even when my dh and other therapists think she has issues I still worry that people are going to tell me I am crazy to keep pursuing things because there is nothing wrong with her....which may be one of the reasons this has been really hard because it feels like the dr is saying there is nothing wrong with my child, which negates what I have to do each and every day to help her.

[Guest]

I am not an expert of any kind but I hear your frustrations and I know how you feel. Our system here is pretty messed up also, especially if you don't have a good doctor to fall back on. Trust me, I know! I am just educating myself and I feel that this is the best I can do for my boys for now. Read, read, read as much as you can. You can fight things better when you are better informed.

 

Like I said, I am no expert and the ladies here will definitely give you better advice but the one thing I have learned these past few months while researching LD's is that you are the best advocate for your child. My goal is to use approaches that I find in what I read to deal with ADD, Autism and SID (and all that comes with those). There is a lot of overlap so certain things will help in all these areas, and doing so will not harm the child in any way. They will benefit, whether they are autistic or not. At least, that's the way I see it ;)!

[AmyinMD]

Sadly we can't get any help unless she gets diagnosed with autism...we tried with ADHD but everything revolves around the diagnosis of autism. Also many people who meet my daughter and hear she has ADHD think she is a naughty child and refuse accomadations...but say autism and they jump with how to help. Its so frustrating...without a label I feel like I did before where I had no idea what to do that would help her because the normal stuff doesn't work, the ADHD stuff doesn't help her play with other kids...and so again we are left back at square one with what do we do with our little girl so that she can be the best she.

 

 

 

I think she went in with the opinion dd didn't have autism...she has been working with dd for a year now and has never felt she had autism...but this doctor also doesn't believe in sensory processing disorder. I don't know about administer it correctly because I don't know how it was suppose to be administered, what it was testing or how the scores are determined. I think she will be scoring it to her view that dd doesn't have autism rather than being truly objective...I almost wish the person who did the test had never met my child and could be truly objective.

 

 

Have you looked into what kind of help you can get with a diagnosis? My 4 yo has an ASD diagnosis and honestly I'm not sure it was worth having him diagnosed. He hasn't qualified for any extra services for getting the diagnosis so far.

Edited February 14, 2012 by AmyinMD

[Crimson Wife]

I am fairly unimpressed with the ADOS. My DD had it 3 times in the span of 8 weeks by 3 different practitioners (developmental pediatrician, school psychologist, and psychologist hired by the Regional Center) and while all 3 evaluations concurred with the ASD diagnosis, the results of the 3 ADOS administrations were all over the map. :rolleyes:

 

If you think the neuropsych results were accurate, then I would try seeking another independent eval.

[akalori]

Crimson Wife has a good point it really isn't a reliably objective test since it relies on the clinician's interpretation of observed and expected behaviors.

 

Lori

[Crimson Wife]

Crimson Wife has a good point it really isn't a reliably objective test since it relies on the clinician's interpretation of observed and expected behaviors.

 

Lori

 

The developmental pediatrician noted that DD met the ADOS criteria for both language impairment and repetitive behaviors. The school psychologist noted language impairment but no repetitive behaviors. The Regional Center psychologist noted repetitive behaviors but didn't think DD's speech met ADOS criteria for language impairment. From my POV as her parent, I thought DD displayed similar levels of speech and hand-flapping/spinning/pacing in each of the 3 ADOS tests. :glare:

[itsheresomewhere]

Any doctor who does not believe in sensory processing disorder needs to be fired. Find another doctor.

[amo_mea_filiis.]

I don't know where else to go out here...and I get really stressed out...I consistently feel like people are going to tell me I am nuts my child is normal...even when my dh and other therapists think she has issues I still worry that people are going to tell me I am crazy to keep pursuing things because there is nothing wrong with her....which may be one of the reasons this has been really hard because it feels like the dr is saying there is nothing wrong with my child, which negates what I have to do each and every day to help her.

 

BTDT and still going through it. My son saw a neurological pediatric nurse practitioner for years. She always seemed eager to help, but when I look back, I realize she had never done anything! She went from saying he was autistic at 18 months, to telling me that a stroller to restrain him for his safety was abusive, but had no problems recommending we try risperdal!

 

I have a psychological report accusing me of abuse that I can't seem to get away from. Children and Youth said his accusation was unfounded, he's not allowed anywhere near my son, my son's case, or any medical records, yet this stupid report will not go away.

 

All specialists have their own diagnoses of my son, but no one is willing to THINK and put it all together (hopefully the geneticist in June will).

 

You're the mom, you know best. If a Dr is not helping you, toss them. Just keep all records for future reference, or a serious accusation that "you're crazy, kid is normal."

 

:grouphug::grouphug::grouphug:

[DandelionMom]

I would seek out another doctor. Some doctor really do not understand autism and think of only the classic autistic characteristics. I would not even take the second doctors diag. seriously. You know your dd better than anyone. Maybe looking into a full autism screening from a local Easter Seals.

 

 

I totally second this! If the doctor doesn't understand what she/he is looking at, the diagnosis will be completely wrong.

[funnygirl]

Is this a pediatric specialist? Someone who frequently sees children with spectrum disorders? If not, I have to agree with the hive and urge you to have a re-evaluation. It stinks, because it's more money out-of-pocket, but it's one of those things that we have to do sometimes.

 

Sadly we can't get any help unless she gets diagnosed with autism...we tried with ADHD but everything revolves around the diagnosis of autism. Also many people who meet my daughter and hear she has ADHD think she is a naughty child and refuse accomadations...but say autism and they jump with how to help.

 

I definitely understand where you're coming from here. However, if some of the symptoms she is presenting with are those of ADHD, and you're willing to try meds, you might find you're quite pleased with the results. This would also serve the purpose of isolating the "autistic" symptoms (hand-flapping), as those won't be treated by meds. It might actually help prove your case.

 

Best wishes!

[Guest]

BTDT and still going through it. My son saw a neurological pediatric nurse practitioner for years. She always seemed eager to help, but when I look back, I realize she had never done anything! She went from saying he was autistic at 18 months, to telling me that a stroller to restrain him for his safety was abusive, but had no problems recommending we try risperdal!

 

I have a psychological report accusing me of abuse that I can't seem to get away from. Children and Youth said his accusation was unfounded, he's not allowed anywhere near my son, my son's case, or any medical records, yet this stupid report will not go away.

 

All specialists have their own diagnoses of my son, but no one is willing to THINK and put it all together (hopefully the geneticist in June will).

 

You're the mom, you know best. If a Dr is not helping you, toss them. Just keep all records for future reference, or a serious accusation that "you're crazy, kid is normal."

 

:grouphug::grouphug::grouphug:

 

It's reading things like this that makes me glad I have not jumped at getting an evaluation yet. I'm sorry your family had to go through this :(!