Autism/Aspergers???

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Jan 30, 2005
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!
 
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
 
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.
 
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?
 
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
 
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?
 
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.
 
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....
 
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.
 
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)
 
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??
 
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,
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.
 
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.
 
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.
 
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.
 
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
 
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.
 
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.
 
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.
 

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