Autism/Aspergers???

[goofy's friends]

hi, I am new to this board, but what better place to ask my question??:) I'll make a long story short and won't bore you with all the symptoms. After trying to help my son in many ways, we are finally taking him in for an evaluation. Apparently, this eval is to determine if further testing is needed. He has been on an IEP since 3 years old for speech and language and social reasons. Now, his dr. agrees that we need to test to see if he is on the autism spectrum. Maybe Asperger's? So, the evaluation is Monday and DH and I are at a loss of how to explain to him what we are going to see this dr. about. What should we tell him? He's 8 (almost 9) by the way, but acts younger and may have a hard time understanding what's going on. Thanks if you can help!

[bookwormde]

Just let him know that everyone is different and that he has gifts and challenges that may be different from other poeple, so the doctors are going to help you (parent) learn what they are and how to help him have the most fun with his gifts and to work around the challenges. All of our kids know they are differnet even if it is never said , so dancing around that fact just makes it seem like someing is "wrong"

If you have not already get a copy of Tony Attwood's "The complete guide to Aspergers" which is available on Amazon for about $17 and you will be much better equiped to support your child and help him to florish.

Just so you know a proper evalution is done by a team of professionals experiance with Aspergers not one clinician.

bookwormde

[jodifla]

hi, I am new to this board, but what better place to ask my question??:) I'll make a long story short and won't bore you with all the symptoms. After trying to help my son in many ways, we are finally taking him in for an evaluation. Apparently, this eval is to determine if further testing is needed. He has been on an IEP since 3 years old for speech and language and social reasons. Now, his dr. agrees that we need to test to see if he is on the autism spectrum. Maybe Asperger's? So, the evaluation is Monday and DH and I are at a loss of how to explain to him what we are going to see this dr. about. What should we tell him? He's 8 (almost 9) by the way, but acts younger and may have a hard time understanding what's going on. Thanks if you can help!

Technically, a language delay means no Asperger's. It's in the current definition of the disorder.

What tests will they be doing? Who will be evaluating those tests, and how much training do they have? What is their accuracy rate? Those are all questions I'd be asking.

There are several other language disorders that can look like autism but are actually something separate.

[goofy's friends]

Thank you Bookwormde for the good words to say to him. That will be a great way to put it. From what I understand (which I haven't been given a lot of information) is that the evaluation is done by one nurse practitioner and lasts an hour 1/2 to two hours. This is just to determine if they feel that further testing is warrented. Their testing wait is 6 mos. to a year:scared1:and testing takes all day and is done (I believe) by a team of physchologists, etc. I'm not sure what tests they would administer at that time or even what test they are doing for the evaluation--all I know is that the parent interview is first and should take a 1/2 hour. As far as their training, the facility is a lead Autism research facility, so I just assume they have the expertise to do what they are doing, but I will definately ask these questions when I go for the eval. (thanks for that suggestion jodifla). Oout of curiousity, what other language disorders mimic autism? Do they also have the social awkwardness with them?

[bookwormde]

At young ages there are some that can be mistaken for Austism characteristics, but at your childs age it would take some major incompitance for a clinicain to be "confused"

bookwormde

[jodifla]

Thank you Bookwormde for the good words to say to him. That will be a great way to put it. From what I understand (which I haven't been given a lot of information) is that the evaluation is done by one nurse practitioner and lasts an hour 1/2 to two hours. This is just to determine if they feel that further testing is warrented. Their testing wait is 6 mos. to a year:scared1:and testing takes all day and is done (I believe) by a team of physchologists, etc. I'm not sure what tests they would administer at that time or even what test they are doing for the evaluation--all I know is that the parent interview is first and should take a 1/2 hour. As far as their training, the facility is a lead Autism research facility, so I just assume they have the expertise to do what they are doing, but I will definately ask these questions when I go for the eval. (thanks for that suggestion jodifla). Oout of curiousity, what other language disorders mimic autism? Do they also have the social awkwardness with them?

The downside about going to an autism center is that too often they seem predisposed to Dx autism. They are a hammer, so everything is a nail. It depends on the center.

We went to someone at a university research hospital who had every Dx on the table. That's the old-fashioned, scientific way to do things.

My son has severe Mixed Expressive Receptive Language Disorder. This can look like autism at younger ages, particularly. Now at 8, most people who see him understand he has language disorder. But kids like this often won't make eye contact (because they KNOW that if you look at someone the expectation is you'll TALK to them), they tend to be wary and standoffish with strangers, school is quite difficult and there's often behavior problems (they cannot handle the verbal load, they get bored and look ADHD). They are behind socially because other kids don't want to take the time with them, they get sick of the constant rejection, so they don't even try.

Central Auditory Process Disorder can do many of these things as well. The book Like Sound Through Water details it.

I'd get a rundown of the tests they do, and I'd specifically ask about their accuracy rate. Five years down the road, how often have they been right?

[GraceLuvsWDW]

I just have to say here that getting hung up on delayed verbal skills=no aspergers is not really valid. My dd had no words, NONE, at age 2 and a half and was hyper verbal by age three. Aspergers can manifest with delayed verbal skills. While the DSM diagnostic criteria say no disruptions in verbal abilities, if you look at the Gillberg Critera that are used in most other countries, the lack of speech delay is not a requirement for diagnosis. Only 3 out of 5 verbal peculiarities are required: delayed speech, superficially perfect expressive language, formal pedantic language , odd or peculiar voice characteristics, and misinterpretation of literal meanings. Many studies and specialists have criticized the DSM for this.

While I can see why a language disorder would be brought up, the Aspergers diagnostic criteria would definitely clarify-the language disorders don't present with the motor clumsiness, narrow interests, and compulsive need for routines. I think the Autism specialist would be best able to "weed" out these criteria with the use of the specific Autism tests available. They will be more likely and more proficient with use of the GADS or the ADOS to make the conclusive diagnosis or lack thereof. I would be more worried of a specialist not versed in Autism make an incorrect dx of Autism.

[goofy's friends]

Grace, that is interesting. DS does have 3 of those criteria--delayed speech, odd voice characteristics, and misinterpretation of literal meanings. He also has the motor clumsiness, narrow interests, and compulsive need for routines. There is definately more to this than the language, but the language is a big part. I wonder if a highly trusted facility (for autism research) in the US takes the other countries' studies into consideration when making a diagnosis....

[GraceLuvsWDW]

Just be aware it is a very unknown field. They are always expanding the knowledge base and changing the diagnostic criteria. And what does all of that mean? Well, in my opinion, when it comes right down to it the exact diagnosis doesn't really do anything for you. It doesn't tell you, like other diagnoses, take this pill, etc. Every child is an individual, they all present differently. It is going to take some time and knowledge for you to figure out how to help your son (whatever his issues may be).
The best thing the diagnostic testing did for us was to clarify just how her cognitive abilites compared to same age peers and where her strengths and weaknesses were. That information was very helpful!

Good Luck.

[deerhart]

Technically, a language delay means no Asperger's. It's in the current definition of the disorder.

There are several other language disorders that can look like autism but are actually something separate.

Under the DSM IV for Aspergers the no language delay is actually qualified in that it defines the lack of language delay to be that the child cannot put together 2 word sentences by age 3. This is actually at least a 12-18 month delay in skills. Thus a child CAN have a speech/language delay and still qualify for Aspergers so long as the child was able to make 2 word sentences by age 3.

We got a great explanation on this when they were doing rule outs on my son, who had a 18 month language delay, but was still looking at Aspergers, because he could make 2 word sentences.

YES several other disorders can look like aspergers and not be aspergers. My son's final dx were MERLD and CAPD. Combined with his ADHD-HI they did a great job of mimicing a lot of aspie type behaviors and tricking lots and lots of people into either ignoring or trying to write off the blatant signs that he wasn't on the spectrum.

Both MERLD and CAPD can have social awkwardness with them, but it stems from different sources. I will list some of my son's autistic "traits" and where we found they actual came from

1) echolalia - common sign of autism, his stemmed from his extremely poor short term auditory memory. He had to constantly repeat what he heard over and over two do two things, correctly process the information and store it in long term auditory memory. He will still parrot some today, but it usually only occurs when he's confused, frustrated/angry, the conversation is moving to fast for him (due to usually emotions) or he doesn't really understand what is being said so he spits it back.

2) lack of eye contact - another common trait of autism, but for my son, he lacked eye contact because he was attempting to read people's lips due to his inability to understand what they were saying and couldn't distinguish the voice from background noise.

3) sensory issues - another common thing found with autism, but my child's sensory issues stemmed from three things, his hyperactivity, anxiety, and ear infections (head/ear sensory issues). Currently, we only deal with the sensory needs stemming from anxiety (type A personality, perfectionist, in a not so perfect person)

4) social delays - another big autism thing, well if your already an anxious person AND you are only picking up 2 words out of every 10 said to you, and this leads to lots of mistakes, people looking at you funny, making fun of you etc.. well how social are you going to be? Further, add in that your an introvert and much more interested in things well above your actual age and its a recipe for social disaster. Also, the hyperactivity causes MANY adhd children to simply miss the minute physical and verbal social cues people give off because their minds (and bodies) are already 3 or 4 steps ahead of the current instance. I watch both my boys do or say something and then see the glimmer of realization of what they just said/did sink in a few seconds later as their brain processing what is going on catches up with what they are doing. Mind you both my boys have unbelievable high processing speeds as well, so a child with a normal processing speed, or many of the ADHD kids who have decreased processing speeds it will take even longer.

5) Another thing on social delays, my son gets easily embarrassed from messing up due to the anxiety and such and thus he is reluctant to put himself into a social situation or when he does, he gets SO excited that its happening that he becomes over aggressive regarding it (like not understanding why a child hasn't called when they said they would and that he should confront the child, which is what of course he's been taught to do with a problem, but its not appropriate for "this" social situation)

6) routines and rule bound - again COMMON autism signs, but they aren't singularly autism. My son is VERY rule bound, not because he can't break rules etc, but the anxiety of going outside them isn't something he can yet handle. He finds it very easy to break some rules, but not others (for example safety rules). He also MUST have advanced warning of a schedule change. If he doesn't know in advanced, he's likely to not hear/understand it when it just happens, thus does something wrong, and then the anxiety self doubt etc all kick in. Not something we deal with much anymore, but occasional it peeps back up. He used to need hours warnings, now he just needs to be told specifically right before it happens and perhaps giving a small explanation for why. It was never to the point that we HAD to do the routine/follow the rule without any change at all. Only that we had to prepare him for it. Today I can start out a trip saying we are going to x, then y, then z and after x say hmm I think we will go to Z then y and he's doesn't even blink. His obsessions are driven by anxiety, which is worsened, fueld by his hyperactivity.

I will add that with my son, when he gets emotional the first skills that go are his verbal skills. It used to be to the point that he couldn't articulate anything at all until he calmed down. Now, some of these things pop up, like the echolalia, saying nonsense, becoming rigid about the way things are to be done etc.. but these are all self protecting mechanisms that he has. Almost all his autism signs suddenly disappeared after about 12 months of treatment for his CAPD (and so did his MERLD). Now we are left dealing with residual stuff and strengthening his language/verbal skills (we now only have a 25-40 point gap between verbal and nonverbal skills, versus a 65-75 one)

[jodifla]

Under the DSM IV for Aspergers the no language delay is actually qualified in that it defines the lack of language delay to be that the child cannot put together 2 word sentences by age 3. This is actually at least a 12-18 month delay in skills. Thus a child CAN have a speech/language delay and still qualify for Aspergers so long as the child was able to make 2 word sentences by age 3.

We got a great explanation on this when they were doing rule outs on my son, who had a 18 month language delay, but was still looking at Aspergers, because he could make 2 word sentences.

YES several other disorders can look like aspergers and not be aspergers. My son's final dx were MERLD and CAPD. Combined with his ADHD-HI they did a great job of mimicing a lot of aspie type behaviors and tricking lots and lots of people into either ignoring or trying to write off the blatant signs that he wasn't on the spectrum.

Both MERLD and CAPD can have social awkwardness with them, but it stems from different sources. I will list some of my son's autistic "traits" and where we found they actual came from

1) echolalia - common sign of autism, his stemmed from his extremely poor short term auditory memory. He had to constantly repeat what he heard over and over two do two things, correctly process the information and store it in long term auditory memory. He will still parrot some today, but it usually only occurs when he's confused, frustrated/angry, the conversation is moving to fast for him (due to usually emotions) or he doesn't really understand what is being said so he spits it back.

2) lack of eye contact - another common trait of autism, but for my son, he lacked eye contact because he was attempting to read people's lips due to his inability to understand what they were saying and couldn't distinguish the voice from background noise.

3) sensory issues - another common thing found with autism, but my child's sensory issues stemmed from three things, his hyperactivity, anxiety, and ear infections (head/ear sensory issues). Currently, we only deal with the sensory needs stemming from anxiety (type A personality, perfectionist, in a not so perfect person)

4) social delays - another big autism thing, well if your already an anxious person AND you are only picking up 2 words out of every 10 said to you, and this leads to lots of mistakes, people looking at you funny, making fun of you etc.. well how social are you going to be? Further, add in that your an introvert and much more interested in things well above your actual age and its a recipe for social disaster. Also, the hyperactivity causes MANY adhd children to simply miss the minute physical and verbal social cues people give off because their minds (and bodies) are already 3 or 4 steps ahead of the current instance. I watch both my boys do or say something and then see the glimmer of realization of what they just said/did sink in a few seconds later as their brain processing what is going on catches up with what they are doing. Mind you both my boys have unbelievable high processing speeds as well, so a child with a normal processing speed, or many of the ADHD kids who have decreased processing speeds it will take even longer.

5) Another thing on social delays, my son gets easily embarrassed from messing up due to the anxiety and such and thus he is reluctant to put himself into a social situation or when he does, he gets SO excited that its happening that he becomes over aggressive regarding it (like not understanding why a child hasn't called when they said they would and that he should confront the child, which is what of course he's been taught to do with a problem, but its not appropriate for "this" social situation)

6) routines and rule bound - again COMMON autism signs, but they aren't singularly autism. My son is VERY rule bound, not because he can't break rules etc, but the anxiety of going outside them isn't something he can yet handle. He finds it very easy to break some rules, but not others (for example safety rules). He also MUST have advanced warning of a schedule change. If he doesn't know in advanced, he's likely to not hear/understand it when it just happens, thus does something wrong, and then the anxiety self doubt etc all kick in. Not something we deal with much anymore, but occasional it peeps back up. He used to need hours warnings, now he just needs to be told specifically right before it happens and perhaps giving a small explanation for why. It was never to the point that we HAD to do the routine/follow the rule without any change at all. Only that we had to prepare him for it. Today I can start out a trip saying we are going to x, then y, then z and after x say hmm I think we will go to Z then y and he's doesn't even blink. His obsessions are driven by anxiety, which is worsened, fueld by his hyperactivity.

I will add that with my son, when he gets emotional the first skills that go are his verbal skills. It used to be to the point that he couldn't articulate anything at all until he calmed down. Now, some of these things pop up, like the echolalia, saying nonsense, becoming rigid about the way things are to be done etc.. but these are all self protecting mechanisms that he has. Almost all his autism signs suddenly disappeared after about 12 months of treatment for his CAPD (and so did his MERLD). Now we are left dealing with residual stuff and strengthening his language/verbal skills (we now only have a 25-40 point gap between verbal and nonverbal skills, versus a 65-75 one)

As always, you have such wonderfully detailed explanations! Thanks. My son put his first two word sentence together as he turned 3....but only one.

My son has MERLD with auditory processing weaknesses. We haven't yet tested him for CAPD. He's 8, and the folks we're working with at Vanderbilt think he'll likely outgrown those weaknesses as his language comes in.

At what age did you test your child for CAPD??

[goofy's friends]

Jodifla,
We are going to Vanderbilt for the evaluation and testing, does that make you think differently on how they will handle it? What has been your experience there?

[jodifla]

Jodifla,
We are going to Vanderbilt for the evaluation and testing, does that make you think differently on how they will handle it? What has been your experience there?

I think it depends on who you see at Vanderbilt. But our people were just top-notch. Everything they said about my child is unfolding as they said it would. And everybody else who saw us and NO CLUE. And I do repeat, NO CLUE. They basically took wild guesses, and even with their guessing, they offered no road map on how to proceed.

It's frightening how many people consider themselves "experts" when they actually have little idea of what they are doing. I've learned not to waste my time or my child's time on them. Life is too short!

We go there annually now for reassessments.

[jodifla]

I just have to say here that getting hung up on delayed verbal skills=no aspergers is not really valid. My dd had no words, NONE, at age 2 and a half and was hyper verbal by age three. Aspergers can manifest with delayed verbal skills. While the DSM diagnostic criteria say no disruptions in verbal abilities, if you look at the Gillberg Critera that are used in most other countries, the lack of speech delay is not a requirement for diagnosis. Only 3 out of 5 verbal peculiarities are required: delayed speech, superficially perfect expressive language, formal pedantic language , odd or peculiar voice characteristics, and misinterpretation of literal meanings. Many studies and specialists have criticized the DSM for this.

While I can see why a language disorder would be brought up, the Aspergers diagnostic criteria would definitely clarify-the language disorders don't present with the motor clumsiness, narrow interests, and compulsive need for routines. I think the Autism specialist would be best able to "weed" out these criteria with the use of the specific Autism tests available. They will be more likely and more proficient with use of the GADS or the ADOS to make the conclusive diagnosis or lack thereof. I would be more worried of a specialist not versed in Autism make an incorrect dx of Autism.

Actually, MERLD often does have these components. Children who understand very little spoken language get very fixed on routines and are frightened/anxious when they are changed-- they have NO idea what's coming next.

And as Deerhart said, being social is extremely difficult for kids with MERLD -- they can't keep up with kids' conversations, so after enough teasing or being abandoned while playing, they start to give up.

My son only recently started making eye contact with people he doesn't know....his receptive language has come in enough that only now can he hope to have a conversation with them without it ending in failure.

And the language center is often tied to fine motor skills, so they often have trouble writing.

That's why parents should find a real expert with ALL the possible Dxes on the table. Autism shouldn't be Dxed of secondary and tertiary symptoms.

The new DSM takes language delay off the table all together as a marker for autism.

[jodifla]

Graceluvs' -- I wasn't familiar with the Gilliard'S Criteria before. It does seem a more accurate representation of Asperger's than the DSM, from how I hear others describe their children with Asperger's.


Thanks for sharing that.

[deerhart]

As always, you have such wonderfully detailed explanations! Thanks. My son put his first two word sentence together as he turned 3....but only one.

My son has MERLD with auditory processing weaknesses. We haven't yet tested him for CAPD. He's 8, and the folks we're working with at Vanderbilt think he'll likely outgrown those weaknesses as his language comes in.

At what age did you test your child for CAPD??

We had him tested the day after his 6th b-day (the earliest anyone would test for him). We had suspected CAPD for a number of years.

We wanted it down as soon as possible because all research indicates that the neural pathways that process sound a complete (solidified) around age 8. Prior to that, we still had some opportunity to make new pathways and possible do more curing versus just compensation for the condition.

[iwrbnd]

I have two boys who are mildly on the spectrum and they sound exactly like your GERLD/CAPD child. I've never even heard of those disorders! My one child got "aspergers probable" and the other one got "mild autism". Both have come so far that nobody notices their differences! (But, they still struggle with hidden issues) Both are very similiar and both had speech/language delays.

I wish there was a blood test for these kiddos! It would make diagnosis so much easier!

The week my son got an autism diagnosis my friend took her son (same age) to the same doctor and got language delay. Fast forward a few years and mine is getting straight A's in school and blends in w/peers while her's has to have an aide because his now diagnosed autism is so severe!:confused3

[tinkerbelletreasure]

Wow..I read all this and feel hopelessly uninformed! My son will be 3 in July. His language development stalled out at about 18 months. He's seeing a therapist now and he fianlly starting to progress again. He's said a couple of 2 sentences...hi dada, go night night. He's very socially awkward. He barely looks people in the eyes, would rather play near other children than with other children, and ht eonly time he speaks to anyone other than myself and my husband is to tell someone bye bye when he's tired of them ans wants them to leave him alone.
My step daughter who is almost 13 was "diagnosed" as having sensory integration dysfunction" abotu 2 years ago, but from what we've read that seems to be more of a collection of symptoms rather than an actual diagnosis. Pdd-nos seems to be the most common diagnosis for those symptoms. She has learning disabilities and she had an IQ test last year where she scored just 5 pts above mild MR. But she never had the language delays he has.
When we first realized he was delayed we several evaluations done and he's never been specifically diagnosed with anything. Both Autism and Aspergers came up inconclusive, but I wouldn't be suprised if he is on the spectrum somewhere. I've been around children who have had both those disorders and I can see similarities, but he isn't as sever. He doesn't have any motor delay. In fact he's probably advanced with fine motor skills. But he loves repetition: opening and closing doors, spinning wheels, ect. He seems to understand what we say, follows commands, and his hearing is fine. Cognitively I think he is on level. He is very good at problem solving and wants to take things apart and put them back together. it just gets so frustrating when he gets easily distracted by things like lights and ceiling fans.

Anyway, I don't want to take over the thread, but it is nice to talk to other people who have faced the same challenges. Especially when it comes to diagnosis. We are still so new to the process.

[iwrbnd]

Wow..I read all this and feel hopelessly uninformed! My son will be 3 in July. His language development stalled out at about 18 months. He's seeing a therapist now and he fianlly starting to progress again. He's said a couple of 2 sentences...hi dada, go night night. He's very socially awkward. He barely looks people in the eyes, would rather play near other children than with other children, and ht eonly time he speaks to anyone other than myself and my husband is to tell someone bye bye when he's tired of them ans wants them to leave him alone.
My step daughter who is almost 13 was "diagnosed" as having sensory integration dysfunction" abotu 2 years ago, but from what we've read that seems to be more of a collection of symptoms rather than an actual diagnosis. Pdd-nos seems to be the most common diagnosis for those symptoms. She has learning disabilities and she had an IQ test last year where she scored just 5 pts above mild MR. But she never had the language delays he has.
When we first realized he was delayed we several evaluations done and he's never been specifically diagnosed with anything. Both Autism and Aspergers came up inconclusive, but I wouldn't be suprised if he is on the spectrum somewhere. I've been around children who have had both those disorders and I can see similarities, but he isn't as sever. He doesn't have any motor delay. In fact he's probably advanced with fine motor skills. But he loves repetition: opening and closing doors, spinning wheels, ect. He seems to understand what we say, follows commands, and his hearing is fine. Cognitively I think he is on level. He is very good at problem solving and wants to take things apart and put them back together. it just gets so frustrating when he gets easily distracted by things like lights and ceiling fans.

Anyway, I don't want to take over the thread, but it is nice to talk to other people who have faced the same challenges. Especially when it comes to diagnosis. We are still so new to the process.

My boys on the spectrum are like that. If I compare them to a child w/autism or aspergers they appear normal but if I compare them to a typical child the don't! I've come up with my own way of describing them. I say in the pool of autism they got splashed! Their doctor likes it and has even used it on other hard to diagnose children...the ones that fall between the cracks.

[jodifla]

Here's the definition of MERLD

http://www.minddisorders.com/Kau-Nu/Mixed-receptive-expressive-language-disorder.html

Some highlights:

In general, mixed receptive-expressive language disorder is characterized by a child's difficulty with spoken communication. The child does not have problems with the pronunciation of words, which is found in phonological disorder . The child does, however, have problems constructing coherent sentences, using proper grammar, recalling words, or similar communication problems. A child with mixed receptive-expressive language disorder is not able to communicate thoughts, needs, or wants at the same level or with the same complexity as his or her peers. In addition, the child often has a smaller vocabulary than his or her peers.

Children with mixed receptive-expressive language disorder also have significant problems understanding what other people are saying to them. This lack of comprehension may result in inappropriate responses or failure to follow directions. Some people think these children are being deliberately stubborn or obnoxious, but this is not the case. They simply do not understand what is being said. Some children with this disorder have problems understanding such specific types of terms as abstract nouns, complex sentences, or spatial terms.

Teaching children with this disorder specific communication skills so that they can interact with their peers is important, as problems in this area may lead to later social isolation, depression, or behavioral problems. Children who are diagnosed early and taught reading skills may benefit especially, because problems with reading are often associated with mixed receptive-expressive language disorder and can cause serious long-term academic problems.

[deerhart]

I have two boys who are mildly on the spectrum and they sound exactly like your GERLD/CAPD child. I've never even heard of those disorders! My one child got "aspergers probable" and the other one got "mild autism". Both have come so far that nobody notices their differences! (But, they still struggle with hidden issues) Both are very similiar and both had speech/language delays.

I wish there was a blood test for these kiddos! It would make diagnosis so much easier!

The week my son got an autism diagnosis my friend took her son (same age) to the same doctor and got language delay. Fast forward a few years and mine is getting straight A's in school and blends in w/peers while her's has to have an aide because his now diagnosed autism is so severe!:confused3

With what I learned doing tons and tons of research and talking to lots of professionals, I would never trust a doctor that gave a "mild" or probable autism diagnosis. There is nothing in the DSM IV that indicates autism is anything but severe. My son's behaviors never moved beyond moderate even in the social skill area.

I did tons and tons of research. We first though he could be hyperlexic (he taught himself to read at age 2 and was completely obsessed with numbers and letters). That was quickly ruled out because he read for comprehension (which ruled out hyperlexia). Autism was ruled out as well (after the developmental ped spent 5 minutes with him, had him interact very well, said he "could" be pdd-nos but not enough to bother with labeling him.. we kept looking) by a psychiatrist and later by a neuropsych. The psychiatrist dx the MERLD and ADHD-HI, the neuropsych agreed with the assessment (confirming the dxs) and then told us there is something else that they couldn't put their finger on. By then we were already suspecting CAPD due to his behaviors. These included things like insisting we said one workd when we said something completely different and not remotely even like the word he thought we said (ex: royal tree lane he would insist was pine tree lane), his inability to repeat things that were from a non-pure source (ie tv, radio, telephone), his inability to talk on a phone (he would just continue to say what what what or not respond like no one ever said anything), acting deaf in loud or crowded places, the significant language testing results we got based on where the tests where done (test done in single room with no one walking in the halls and no background noise = 6 month or less delay, testing done at school with kids making noise in hall, background noise = 18-24 month delays) . The scary thing about the speech/language results were the three tests that were done (one showed 18-24 month delay both rec/exp, one showed 0-6 month delay, exp only one showed 12 month delay both) were all done within 60 days of each other!

During the neuropsych testing, his autism checklist scores were WAY below even concern level (even by the sped teachers who really thought he was going to get an autism label). Concern level was around 100 with dx closer to 120, he was in the 70's across the board.

He's always going to be socially awkward (but so is his mom) and uncomfortable in social situations (again me!) but that is just as much a function of his personality as anxiety. But it's not severe, it doesn't interfere with his life.

The one left over of both the CAPD and the MERLD we have been dealing with is reading comprehension. It still lags way behind both his reading level and his working IQ, but it is catching up each year. His rushing through everything doesn't help either LOL

[GraceLuvsWDW]

I have days with my dd that I absolutely think the dx is wrong, there's no way she could have Autism. Other days I buckle under the absolute debilitation that she experiences and wonder how she'll ever live an independent life. One thing I've realized is that everyone has good days and bad days. That can also account for the variations in testing results. I also had a Dev Pedi tell me she didn't think my dd was on the spectrum after visiting with her for 20 minutes in our first visit, now we still see that Pedi and she doesn't question the dx at all. What I am trying to get at is that these kids can have good days and act fairly NT and be hard for even the most educated and knowledgable Dr's to detect without utilizing the formal diagnostic tools. That's why it is always important to have an extensive battery of tests done that span multiple visits imo.

[iwrbnd]

I have days with my dd that I absolutely think the dx is wrong, there's no way she could have Autism. Other days I buckle under the absolute debilitation that she experiences and wonder how she'll ever live an independent life. One thing I've realized is that everyone has good days and bad days. That can also account for the variations in testing results. I also had a Dev Pedi tell me she didn't think my dd was on the spectrum after visiting with her for 20 minutes in our first visit, now we still see that Pedi and she doesn't question the dx at all. What I am trying to get at is that these kids can have good days and act fairly NT and be hard for even the most educated and knowledgable Dr's to detect without utilizing the formal diagnostic tools. That's why it is always important to have an extensive battery of tests done that span multiple visits imo.

Me tooo!!! There are days where I think there is absolutely nothing wrong with my two boys on the spectrum and then there are those days...:rolleyes1

[bookwormde]

It is important to remember that what everyone is talking about above is all part of the Autism genetic set as it is currenetly understood. Many children will be significantly effected by only one of the 3 major areas so a specific diagnosis in that area is more useful than the broader ASD diagnosis. A diagnosis is only a conveniance for clinicains and to get coverage. It is how each area of differnences impacts your child and the needs that that creates that is important. It is also important to remember that just because a characteristic does not rise to a clinical level that it still has an impact on the fuctional capabilities of a child, even though on many days the child may self adapt, but on days of stress or times of complexity overload if may manefest quite obviously.

The most important thing is to educate yourself in all areas of Autism genetics and the independant subgroups, so that you can to the greatest extent understand and help with your child's needs.

bookwormde

[deerhart]

I have days with my dd that I absolutely think the dx is wrong, there's no way she could have Autism. Other days I buckle under the absolute debilitation that she experiences and wonder how she'll ever live an independent life. One thing I've realized is that everyone has good days and bad days. That can also account for the variations in testing results. I also had a Dev Pedi tell me she didn't think my dd was on the spectrum after visiting with her for 20 minutes in our first visit, now we still see that Pedi and she doesn't question the dx at all. What I am trying to get at is that these kids can have good days and act fairly NT and be hard for even the most educated and knowledgable Dr's to detect without utilizing the formal diagnostic tools. That's why it is always important to have an extensive battery of tests done that span multiple visits imo.

We had over 200 pages of medical records, 2 IQ tests, tons of other tests, and input from 10 different caregivers in putting together my son's dx's.

The TRUE key to figuring out was just to keep asking questions. For example, we asked the Developmental ped what how my son met the which 2 social issues under the autism criteria did he meet? He couldn't give us an answer. We asked what his restrictive/repetitive behavior was and got nothing but gibberish about him being "hyper". Versus our neuropsych who had no problems distinguishing how he did/did not meet each of the criteria for each dx he was giving and ruling out (social deficits were mild to moderate NOT severe, no nonfunctional repetitive behavior or routines, and language delay was better explained by MERLD then autism).

This wasn't just a good day versus bad day. My oldest son on a bad day could tantrum for 10-12 hours straight non stop. This was hearing from professionals well he just seems so much like other kids who have been dx with autism so he must be autistic. Or even worse, well just go with the autism label it will get him more help! WHAT???? what good does "more help" do when it's not addressing the real problem!

This was we could change one small thing and get an entirely different child. A good example of this was his kindy party held in the gym. Very very loud, he had been looking at the soft toss and saw they were lined up in three lines. When his section finally got over there, they had changed the way they were doing it to 2 lines. He wanted to toss at the middle bucket and kept trying to get in line for it. They kept trying to tell him to get in another line. His aide stepped in and told him to stop being so rigid, which is when I stepped in, removed him from the extremely loud gym (he was bawling at the time), took him down the hall to a very quiet spot, explained to him that they had changed what was going on from what he had seen, that he needed to get in one of the two lines and after he threw at that bucket, he would then get to toss at the middle. Took him back in, no problems. They could talk and talk and talk to him all they wanted in that environment and were not going to get anywhere because he was basically deaf.

It is also a lot easier to see more borderline cases of autism as the child gets older and those social interactions become more complicated (and the child can't handle it) and other stressors come in and the child's compensation skills can't make up enough to make them look normal still. Our neuropsych told us that if as our son got older and the social stuff got harder and some other things didn't come along, that he could end up being one of those kids that is just so darn smart and so darned good at compensating that he wouldn't fit the dx until he got much older. On the other hand, 1 yar of treatment for the CAPD and no one recognized my child anymore! Language delay all but disappeared, behavior calmed considerably etc.. We spend a good portion of IEP's just marveling at how far he's come.

While I know that good days and bad days do affect testing, that wasn't the case with my son. We could directly affect the outcome of tests by affecting the level of noise he was exposed to during the tests. It was also based on the reported experiences of his behavior in loud areas versus quiet areas etc..

The neuropsych was the best thing we did.

[jodifla]

We had over 200 pages of medical records, 2 IQ tests, tons of other tests, and input from 10 different caregivers in putting together my son's dx's.

The TRUE key to figuring out was just to keep asking questions. For example, we asked the Developmental ped what how my son met the which 2 social issues under the autism criteria did he meet? He couldn't give us an answer. We asked what his restrictive/repetitive behavior was and got nothing but gibberish about him being "hyper". Versus our neuropsych who had no problems distinguishing how he did/did not meet each of the criteria for each dx he was giving and ruling out (social deficits were mild to moderate NOT severe, no nonfunctional repetitive behavior or routines, and language delay was better explained by MERLD then autism).

This wasn't just a good day versus bad day. My oldest son on a bad day could tantrum for 10-12 hours straight non stop. This was hearing from professionals well he just seems so much like other kids who have been dx with autism so he must be autistic. Or even worse, well just go with the autism label it will get him more help! WHAT???? what good does "more help" do when it's not addressing the real problem!

This was we could change one small thing and get an entirely different child. A good example of this was his kindy party held in the gym. Very very loud, he had been looking at the soft toss and saw they were lined up in three lines. When his section finally got over there, they had changed the way they were doing it to 2 lines. He wanted to toss at the middle bucket and kept trying to get in line for it. They kept trying to tell him to get in another line. His aide stepped in and told him to stop being so rigid, which is when I stepped in, removed him from the extremely loud gym (he was bawling at the time), took him down the hall to a very quiet spot, explained to him that they had changed what was going on from what he had seen, that he needed to get in one of the two lines and after he threw at that bucket, he would then get to toss at the middle. Took him back in, no problems. They could talk and talk and talk to him all they wanted in that environment and were not going to get anywhere because he was basically deaf.

It is also a lot easier to see more borderline cases of autism as the child gets older and those social interactions become more complicated (and the child can't handle it) and other stressors come in and the child's compensation skills can't make up enough to make them look normal still. Our neuropsych told us that if as our son got older and the social stuff got harder and some other things didn't come along, that he could end up being one of those kids that is just so darn smart and so darned good at compensating that he wouldn't fit the dx until he got much older. On the other hand, 1 yar of treatment for the CAPD and no one recognized my child anymore! Language delay all but disappeared, behavior calmed considerably etc.. We spend a good portion of IEP's just marveling at how far he's come.

While I know that good days and bad days do affect testing, that wasn't the case with my son. We could directly affect the outcome of tests by affecting the level of noise he was exposed to during the tests. It was also based on the reported experiences of his behavior in loud areas versus quiet areas etc..

The neuropsych was the best thing we did.

Yes, that's why I tell everyone I can to see someone who is QUALIFIED. It makes such a big difference.

You can waste so much of your time and resources, and your child's young life, if you have the wrong information about what's going on with them.

And I'm always flabbergasted when school personnel can't appreciate how having severe language issues impacts not just academics, but behavior and outlook and social contact. Is it really that hard to see that if you couldn't express your feelings, you'd be pretty darned frustrated?? That if people made fun of you, or gave up on you, or made you feel bad about the fact you couldn't keep up a conversation with them, that you'd probably distance yourself from them?

I even have to keep reminding them to "SLOW DOWN" when they talk to him and use fewer words. It's just mind-boggling sometimes.

[goofy's friends]

Well, we had our appointment yesterday. It was a lot to take in and it was just the beginning. The evaluator's recommendation is that "he is at high-risk for being diagnosed on the spectrum." Like I explained before, she doesn't do the testing, just decides if more testing is warrented. So, we are being sent for testing. The bad news is that testing there is 8 months out. However, we qualify for a research study on autism in families that don't have any previous cases of autism. They will test him in a month! So, we are going ahead with that. I have been assured that if they don't believe it is autism, we will be referred to the appropriate psychologists that can help. These researchers are the same testers that would do the 8 month testing, but because we may qualify for the research, they are doing it earlier.

[iwrbnd]

Well, we had our appointment yesterday. It was a lot to take in and it was just the beginning. The evaluator's recommendation is that "he is at high-risk for being diagnosed on the spectrum." Like I explained before, she doesn't do the testing, just decides if more testing is warrented. So, we are being sent for testing. The bad news is that testing there is 8 months out. However, we qualify for a research study on autism in families that don't have any previous cases of autism. They will test him in a month! So, we are going ahead with that. I have been assured that if they don't believe it is autism, we will be referred to the appropriate psychologists that can help. These researchers are the same testers that would do the 8 month testing, but because we may qualify for the research, they are doing it earlier.

:hug:Hang in there and keep us posted on the testing!

[bookwormde]

Reaserch studies are a great way to get a real high quality diagnosis since the standards for defining the study population are peer reviewed. We did one at Kennedy Kreiger (Johns Hopkins in Baltimore) and it also served as the documentation for the 3 year IDEA review.

bookwormde

[jodifla]

Well, we had our appointment yesterday. It was a lot to take in and it was just the beginning. The evaluator's recommendation is that "he is at high-risk for being diagnosed on the spectrum." Like I explained before, she doesn't do the testing, just decides if more testing is warrented. So, we are being sent for testing. The bad news is that testing there is 8 months out. However, we qualify for a research study on autism in families that don't have any previous cases of autism. They will test him in a month! So, we are going ahead with that. I have been assured that if they don't believe it is autism, we will be referred to the appropriate psychologists that can help. These researchers are the same testers that would do the 8 month testing, but because we may qualify for the research, they are doing it earlier.

It's wonderful you won't have to wait so long! Keep us posted.

[iwrbnd]

Just thought you might be interested in this...

Consortium Recommends Microarray Testing as New Standard for Pediatric Genetic Diagnosis
ScienceDaily (May 13, 2010) — An international consortium of genetics experts has issued a consensus statement recommending chromosomal microarray (CMA) as the new standard practice for genetic evaluation of children with unexplained developmental delay, autism or birth defects.

The statement and a related research review are published in the May 14, 2010 issue of the American Journal of Human Genetics.

"CMA gives us a huge improvement in the diagnostic yield of genetic testing and in our ability to counsel parents about why their child has developmental disability or multiple congenital anomalies," says David Ledbetter, PhD, Woodruff professor and director of the Division of Medical Genetics at Emory University School of Medicine. Ledbetter heads the International Standard Cytogenomic Array Consortium (ISCA), a group of clinical genetics laboratories and genomics experts focused on standardizing the collection of cytogenetic data.

"Our consortium statement should help set the new standard of care for genetic evaluation of children with unexplained developmental delays and other birth defects, and should be a major step forward in using modern genomic technology in a clinical setting," Ledbetter says.

Clinical genetic testing is a standard diagnostic practice for testing children with unexplained developmental delay/intellectual disability, autism spectrum disorders and multiple congenital anomalies. These disorders account for the largest proportion of genetic testing because of their high prevalence in the population. Developmental delay/intellectual disability is present in about three percent of the population, and autism spectrum disorders affect approximately one in 150 people.

Previous guidelines have recommended testing with G-banded karyotyping, a type of chromosome testing that was first developed in the early 1970s. These tests allow geneticists to visualize and analyze chromosomes for imbalances, including deletions and duplications of genetic regions (copy number variations) that can be inherited or represent new mutations during sperm or egg development. Some copy number variations are common and benign, while others are associated with disease or developmental disorders.

The human genome project allowed geneticists to develop chromosomal microarray (CMA), also referred to as molecular karyotyping. Various forms of CMA have been used by an increasing number of geneticists, pediatric neurologists and developmental pediatricians over the past several years to evaluate children with developmental disorders. However, uniform best practice guidelines have not yet been issued by professional societies for the routine use of CMA as a first tier test.

"A karyotype to scan for chromosome problems is already a well accepted standard of care for these patients," says the article's first author, David Miller, MD, PhD, of the Division of Genetics and Department of Laboratory Medicine at Children's Hospital Boston. "CMA is a more powerful chromosome scan, so we believe it makes even more sense to do a CMA test in the majority of patients."

The ISCA conducted a literature review of 33 studies, including 21,698 patients tested with CMA, and compared CMA to G-banded karyotyping. They found that CMA consistently has a diagnostic yield of 15 to 20 percent, compared to approximately five percent with G-banded karyotyping. The higher yield of CMA is due primarily to its higher sensitivity for submicroscopic copy number variations.

The ISCA organized two workshops, beginning in 2008, to analyze the research data and develop the consensus opinion. Sufficient research data now exists, the consortium reports, to support CMA as the first frontline test in the evaluation of any child with unexplained, non-syndromic developmental delay, intellectual disability or autism. CMA should replace the G-banded karyotype, which has been the standard for 30 to 40 years, the group recommends.

"We hope that our statement, which represents many different institutions and many different clinicians and laboratory experts, will provide other professional organizations the background scientific data to endorse the conclusions of our group or to make their own evaluation of the data and clinical utility," says Ledbetter.

A third ISCA workshop this June in Bethesda, Md., will include clinicians, clinical labs, genomics and bioinformatics experts, as well as representatives from the top vendors developing chromosomal microarray technology and software for analysis.

Using a Grand Opportunities "GO" grant from the American Recovery and Reinvestment Act (ARRA) through the NIH, the ISCA has been developing a central public database of chromosomal microarray data from clinical labs. That database, which will be housed at the National Center for Biotechnology Information (NCBI) at NIH, is expected to include approximately 200,000 patient samples over the next two years that will be used to develop standard guidelines for interpretation of CMA tests.

The database also will be used to develop additional summary recommendations and allow the ISCA to work with vendors to make interpretation guidelines and software tools available to all clinical testing labs and to clinicians who want to better understand and interpret the laboratory data from their patients.

The ISCA now has a membership of more than 100 clinical cytogenetics laboratories that will contribute genotype and phenotype data to the central database at NCBI. The consortium will continue to collect and analyze data from the pediatric population and compare it to normal copy number variation data from other large databases and continue to refine maps of pathogenic vs. benign copy number variation in the human genome.

Short order...you might want to ask your doctor for a "microarray" blood analysis.;)

[goofy's friends]

Thanks for that...not sure I understand it very well, but I wonder if this what the research study we will be involved in is studying. I will ask some more questions for sure:)

[iwrbnd]

Thanks for that...not sure I understand it very well, but I wonder if this what the research study we will be involved in is studying. I will ask some more questions for sure:)

Definately keep me posted!

[GraceLuvsWDW]

These kinds of "studies" make me nervous. Why do I feel think is just a skip and a jump away from them trying to "cure" the "genetic mutation" which is involved in Autism? As has been stated before, without Autism genetics the world would be a much less technologically evolved place!

[jodifla]

That study also just looks like they are mapping right now. It looks like it would be good information for them, but not really all that helpful to tell you what's going on with your child at this point.

[iwrbnd]

(GraceLuvsWDW) These kinds of "studies" make me nervous. Why do I feel think is just a skip and a jump away from them trying to "cure" the "genetic mutation" which is involved in Autism? As has been stated before, without Autism genetics the world would be a much less technologically evolved place!

I completely understand your point, I really do, but if I could take away the ASD struggles from my child I would do it in a heartbeat! My asd boys are very smart w/math and technology and I don't want to take that away, however their cousins are even brighter and they aren't on the spectrum. There are still a lot of brilliant people out there that don't have autism. Like I said, though, I really do see your point and know what a contribution those on the spectrum make to society. My heart still breaks for my boys with their struggles, though! Life is hard for them!

(jodifla)That study also just looks like they are mapping right now. It looks like it would be good information for them, but not really all that helpful to tell you what's going on with your child at this point.

You're right, lots of it is still mapping at this point. However, it still can possibly help with your child right now. My sister's 12 yr. old son has been diagnosed with autism since he was 3 yrs old. He just had this test done last month and they found out he actually has Phenan-Mcdermid Syndrome (spelling?) She also found out they are almost in the drug testing phase for this syndrome! She would never have known this without the test. It gets her on a more precise road for her son rather than a big umbrella diagnosis of autism. It has also helped with insurance because he's now considered "medical" instead of "behavioral/mental" which reimburses way better!

Whether someone decides to do this test or even treat autism someday is a personal decision. For me, I would do anything to make life easier for my boys and take away their struggles. On the same note, I love them no matter what and appreciate the special talents that asd brings, too!

[GraceLuvsWDW]

I completely understand your point, I really do, but if I could take away the ASD struggles from my child I would do it in a heartbeat! My asd boys are very smart w/math and technology and I don't want to take that away, however their cousins are even brighter and they aren't on the spectrum. There are still a lot of brilliant people out there that don't have autism. Like I said, though, I really do see your point and know what a contribution those on the spectrum make to society. My heart still breaks for my boys with their struggles, though! Life is hard for them!


What if you couldn't take away their struggles without taking away their talents? Would you rather have a "typical" child with less struggles than your kids that are so unique and talented?

I know what you're saying, I've thought it before too. Especially on those VERY hard days. But given the struggles (and let me tell you my dd has a LOT of them) I'd still keep her the way she is, even if a "cure" came out tomorrow. I've tried meds to tame the anxiety and sensory struggles but in the long run, it's a package deal. The profound gifts come with the struggles. Now mind you, my dd is very high functioning, so I could see how a cure for the Kanner's type Autism would be beneficial.

[kirstenb1]

What if you couldn't take away their struggles without taking away their talents? Would you rather have a "typical" child with less struggles than your kids that are so unique and talented?

I know what you're saying, I've thought it before too. Especially on those VERY hard days. But given the struggles (and let me tell you my dd has a LOT of them) I'd still keep her the way she is, even if a "cure" came out tomorrow. I've tried meds to tame the anxiety and sensory struggles but in the long run, it's a package deal. The profound gifts come with the struggles. Now mind you, my dd is very high functioning, so I could see how a cure for the Kanner's type Autism would be beneficial.

I'm with Iwrbnd. I'm still waiting for these gifts to emerge. I'd take my chances, and jump at a cure.

[GraceLuvsWDW]

I'm with Iwrbnd. I'm still waiting for these gifts to emerge. I'd take my chances, and jump at a cure.

I'd be too afraid that it would take away dd's personality-the dd I know. What would we do with our kids if they didn't have their special areas of interest or were suddenly social butterflies? It would be too weird...

Too hard for me to even contemplate.

Would I take away the anxiety and sensitivities if I could guarantee that's ALL that would be taken away? Heck yes, I'd do that. But I still think it's a "package" deal.

[iwrbnd]

What if you couldn't take away their struggles without taking away their talents? Would you rather have a "typical" child with less struggles than your kids that are so unique and talented?

I know what you're saying, I've thought it before too. Especially on those VERY hard days. But given the struggles (and let me tell you my dd has a LOT of them) I'd still keep her the way she is, even if a "cure" came out tomorrow. I've tried meds to tame the anxiety and sensory struggles but in the long run, it's a package deal. The profound gifts come with the struggles. Now mind you, my dd is very high functioning, so I could see how a cure for the Kanner's type Autism would be beneficial.

It's a hard question and I've thought about it a lot, too. My two are also high-functioning but I'm afraid their talents won't ever be used. Plus the stress of everyday life is so hard I feel they miss out on the joys of life. So, I would have to say, "yes" I would take a cure to let them live a "typical, less struggle, average life". I may be wrong, though! I'm also not sure they wouldn't still be "math smart" since that runs in our family. We have LOTS of engineers in our family history, which interestingly, I read families w/engineers have a higher incidence of having children with autism!

I do think it's wonderful that you're at a place in your life where you can say that, though. I'm just not there yet. But, like I said, I see your point and it's a valid one!

[iwrbnd]

I'd be too afraid that it would take away dd's personality-the dd I know. What would we do with our kids if they didn't have their special areas of interest or were suddenly social butterflies? It would be too weird...

Too hard for me to even contemplate.

Would I take away the anxiety and sensitivities if I could guarantee that's ALL that would be taken away? Heck yes, I'd do that. But I still think it's a "package" deal.



I would love mine to be "social butterflies" because that would mean they are forming connections to other people which is what life is about! I would take that weirdness anyday! Mine do have friends but I'm not sure they'll make the effort when they are older. I don't want them alone when I'm gone.

What are your daughter's special interests? She's a cutie, by the way!

[jodifla]

I completely understand your point, I really do, but if I could take away the ASD struggles from my child I would do it in a heartbeat! My asd boys are very smart w/math and technology and I don't want to take that away, however their cousins are even brighter and they aren't on the spectrum. There are still a lot of brilliant people out there that don't have autism. Like I said, though, I really do see your point and know what a contribution those on the spectrum make to society. My heart still breaks for my boys with their struggles, though! Life is hard for them!



You're right, lots of it is still mapping at this point. However, it still can possibly help with your child right now. My sister's 12 yr. old son has been diagnosed with autism since he was 3 yrs old. He just had this test done last month and they found out he actually has Phenan-Mcdermid Syndrome (spelling?) She also found out they are almost in the drug testing phase for this syndrome! She would never have known this without the test. It gets her on a more precise road for her son rather than a big umbrella diagnosis of autism. It has also helped with insurance because he's now considered "medical" instead of "behavioral/mental" which reimburses way better!

Whether someone decides to do this test or even treat autism someday is a personal decision. For me, I would do anything to make life easier for my boys and take away their struggles. On the same note, I love them no matter what and appreciate the special talents that asd brings, too!

This is a great point. And it's been my argument all along that it's a big mistake to consider autism this big spectrum. It's sloppy, sloppy science, and a lot of kids aren't being helped properly because the are misdiagnosed with the overly broad autism umbrella.

It will be great if they can start pinning things down more.

[GraceLuvsWDW]

I do think it's wonderful that you're at a place in your life where you can say that, though. I'm just not there yet. But, like I said, I see your point and it's a valid one!

Well, this happened to be a good day! So it's much easier for me to say this than a few weeks ago when we had a bad period. My dd just scored top of her class for the math benchmark so she too is a math "wiz". I think I get all of my "Autism" perspective from seeing my brother. He's definitely an (undiagnosed) Aspie. He had a tough time growing up, still is not social, but has done phenomenally well for himself. He's an industrial designer, makes gobs of $$$, and understands this world better than I would even get a fraction of on my best day. He's unbelievably gifted/talented and brilliant! I tend to see the Aspies, if understood, protected, and fostered well as brilliant gems that our society needs. Sometimes I even think it is an evolutionary step forward, especially when it comes to brain power and thinking outside of the NT box.

My dd, at 7, has remarkable gifts too, just like my brother. And I feel very lucky to have her precious existence in my life! :goodvibes

[GraceLuvsWDW]

Oh, and one more thing....my brother was diagnosed as MR at age 7. This was back in the 70's when very little understanding of Autism existed. He didn't speak til age 3, didn't read until 4th grade, and was in Special Ed back when that was reserved for the most inflicted of students. When the school IQ tested him they told my mother he would never be independent, held him back grades, and now his IQ as tested qualifies him for Mensa. Of course he would never belong to such a social group as that!

The moral of this story is to focus on the motivators of your child (my brother's motivation was drawing). My dd is also motivated by drawing geometric designs (which the school tries to "encourage" her out of :mad:) and statistics. All patterns are obsessive to my dd.

[kirstenb1]

I'd be too afraid that it would take away dd's personality-the dd I know. What would we do with our kids if they didn't have their special areas of interest or were suddenly social butterflies? It would be too weird...

Too hard for me to even contemplate.

Would I take away the anxiety and sensitivities if I could guarantee that's ALL that would be taken away? Heck yes, I'd do that. But I still think it's a "package" deal.

Grace, I know I'm looking at this through a different filter. My daughters are 7 years apart. Zoe looks exactly like her big sister did at this age. Except there's a lack of animation, spontaneity, focus, whatever. She's not a happy kid. We have so few pictures of her. And that's when you can even get her to hold still for a photo. Her big sister is such a ham. She still loves posing for a picture, and gives so much joy and animation in her expressions, which is really an outward expression of her life. Sure she has bad days, but she has lots of friends, etc to help her balance those days.

So, even something so simple as a photo shows the huge chasm between where Zoe is, and where she could be. It would probably be easier, if the kids didn't look so much alike.

[iwrbnd]

Oh, and one more thing....my brother was diagnosed as MR at age 7. This was back in the 70's when very little understanding of Autism existed. He didn't speak til age 3, didn't read until 4th grade, and was in Special Ed back when that was reserved for the most inflicted of students. When the school IQ tested him they told my mother he would never be independent, held him back grades, and now his IQ as tested qualifies him for Mensa. Of course he would never belong to such a social group as that!

The moral of this story is to focus on the motivators of your child (my brother's motivation was drawing). My dd is also motivated by drawing geometric designs (which the school tries to "encourage" her out of :mad:) and statistics. All patterns are obsessive to my dd.

Awesome story about your brother and it sounds like your daughter is on the same path!:thumbsup2

[iwrbnd]

Grace, I know I'm looking at this through a different filter. My daughters are 7 years apart. Zoe looks exactly like her big sister did at this age. Except there's a lack of animation, spontaneity, focus, whatever. She's not a happy kid. We have so few pictures of her. And that's when you can even get her to hold still for a photo. Her big sister is such a ham. She still loves posing for a picture, and gives so much joy and animation in her expressions, which is really an outward expression of her life. Sure she has bad days, but she has lots of friends, etc to help her balance those days.

So, even something so simple as a photo shows the huge chasm between where Zoe is, and where she could be. It would probably be easier, if the kids didn't look so much alike.

I completely understand this and that's why I'm in the "I want a cure" camp. My NT son just exudes happiness and joy. Not all the time, obviously, but he loves life and is having a ball. My other two have more of a "flat" expression and things irritate them more.

[goofy's friends]

Well, we are back and have a diagnosis of PDD-NOS. Not sure how I feel about it all yet, trying to let it soak in. Thanks for all the help. Testing went well and it was a very long day.

[GraceLuvsWDW]

Well, we are back and have a diagnosis of PDD-NOS. Not sure how I feel about it all yet, trying to let it soak in. Thanks for all the help. Testing went well and it was a very long day.

I'm glad you're through it and have an answer. The diagnosis is so hard to get through. Allow yourself time to grieve and know that now that you have the knowledge to understand the struggles, things will be better.

[goofy's friends]

Thanks Grace......:hug:

[disneydreamer74]

Well, we are back and have a diagnosis of PDD-NOS. Not sure how I feel about it all yet, trying to let it soak in. Thanks for all the help. Testing went well and it was a very long day.

Well, I am happy that at least you have an answer. I will be taking my DD3 to the Autism research center at UNM in 5 days after a 7 month wait on the list. I have been fighting with the insurance companies to get them to fund her OT and speech therapy services and basically they want a definitive diagnosis other that Developmental delays. I have taken her to 2 different child psychologists in this city (las Cruces) and both were perplexed. The second one observed my child on a good day when she actually gave eye contact. After about half hour,she declares that she has some issues but does not have autism because she speaks!! This from the lead child psychologist for the public school system here..yikes!! :scared1: Needless to say, I let her have it. I informed her that I never suspected that she had sever autism, the referral to see her was for Asperger's or HFA. She called me later that night and admitted to me that she had no training at all on the high end of the spectrum and referred me to UNM. It has been a long journey, one that started last Aug. when her preschool teachers told me she need to be tested. I am hoping for any answers as to what is going on with my dear little princess. No matter what the label, I will always glorify her unique abilities. I am saddened by the fact that I must travel 3.5 hours to get an educated eval for my daughter. There really needs to be more resources available to families in the southwest, and likely all over the country. Wish us luck that this will be the last testing we will be going through!!:wizard:

[scojos]

just read through this thread as the mom of an HFASD kid:hug:
labels are good, for me it meant access to info via the interenent and knowledge as power.
here in the uk, we still have to fight for everything, one of the tag lines of a regular disser is never underestimate the strength of the mother of a disabled child i think about this everytime i openmy mouth.
hope your child gets the help they deserve:hug:

[bookwormde]

If you have found a group of clinicans that are highly qualified with HFA/Aspergers in girls you will in the end think the 3.5 hour drive was nothing

bookwormde

[disneydreamer74]

If you have found a group of clinicans that are highly qualified with HFA/Aspergers in girls you will in the end think the 3.5 hour drive was nothing

bookwormde

From what I am told, they are very respected in the field so...I am relying on this team of experts! I agree, the 3.5 hours will amount to minutes if I can finally get some answers. Her issues are : rigid routines, severe food aversions, sensory processing disorder (which may be a symptom or the actual diagnosis), issues with spatiality and the location of her body, and the most limiting issue being her meltdowns (affective storms) when there is a surprise or unexpected occurence. Ugh!!:confused: Just found out at the OT office today that the insurance has told them they will end payments after 2 more sessions, so I am hoping to submit whatever diagnosis she receives to them for reconsideration. We will see what happens! :lovestruc