Not happy with diagnosis

[bookwormde]

It is great to hear that you have top level resources to offer since they are so rare.

bookwormde

 

[ILoveMyGirls]

she is a single mom who has gone thru hell to get the correct diagnosis and care fr her kiddo. she is a superb advocate for her son and has learned so much along the way on these issues. i am still learning from her and her son in regards to these type of issues.

It is great to hear that you have top level resources to offer since they are so rare.

bookwormde

 

[JACH1976]

-

 

[2luvmickey]

Remember, with ALL autism spectrum diagnosis, the social delay MUST be severe, there must be self stimulating behaviors (hand flapping, headbanging etc) or non-functional routines (must drive past a certain landmark no matter where going or can't function, almost OCD type behaviors).

I don't believe this is true. My DS 19 was diagnosed with Asperger's in June of 2009. We have been looking for help since he was in second grade. He never had the hand flapping, he is coordinated and very low on OCD behavior.

However, he does lack empathy, has anxiety, especially in social situations, has a high pain tolerance, cannot make eye contact (just fleeting glances), and has executive function issues to name a few.

The psychologists and speech therapists that have met my son know within five minutes that he has Asperger's. It became more apparent in high school.

Before his ASD diagnosis, DS 19 was misdiagnosed with ADD. He was given Concerta, a stimulant, which increased his anxiety. There is a fine line and you need a reliable professional. It took 10 years and FOUR psychologists, one psychiatrist and two school psychologists before one mentioned Asperger's. Now, all of the puzzle pieces fit together and we know how to help our son.

Use your mother's instinct and follow that. You know your child best of all.

 

[jodifla]

"Remember, with ALL autism spectrum diagnosis, the social delay MUST be severe, there must be self stimulating behaviors (hand flapping, headbanging etc) or non-functional routines (must drive past a certain landmark no matter where going or can't function, almost OCD type behaviors)."


Sorry but this as about as far from the best practices standards for Autism as you can get even is classic autism diagnosis let alone Apsergers or PDD-nos. Yes they should display some repetitive or self stimulatory behaviors, but they can be subtle as long as they are an indication of functional challenges related to the disability. Social delay does not need to be "severe" but must have a significant impact on the individuals ability to function. Top clinicians can actually differentiate between innate social skills and intellectual compensatory social skills which is core since it is the lack of innate social skills and the neurological structures to learn them that is the core of Autism.

Clinicians who use this "I have read DSM-iv and therefore I can diagnose ASD" is the reason why so many of our kids get damaged by clinical incompetence.

Sorry again but if informed people read things like this it perpetuates the myths about autism and spreads clinical incompetence. I have had the opportunity to review the practices of some of the top clinical centers in the country and study pier review autism diagnosis qualification for research studies and I can assure you that all competent clinicians have moved past the stone age model of "he is not flapping and he can look me in the eye so he can't be Autistic".

bookwormde

No, Deerhart is right. The current DSM does specifically say the issues must be severe. It's not "stone age" at all.

It's not a stone age model. It's the here and now scientific criteria.

 

[bookwormde]

No sense in arguing, here is the actual excert for those that diagnose from simply reading the DSM-IV that is fine, best practices interpretation is what competent clinician go by. Also there is no where were the word severe is used in 299.80 or is the II anywhere as resticive, even as a literal reading, as has been presented.

Diagnostic Criteria for 299.80 Asperger's Disorder

[The following is from Diagnostic and Statistical Manual of Mental Disorders: DSM IV]
(I) Qualitative impairment in social interaction, as manifested by at least two of the following:
(A) marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction
(B) failure to develop peer relationships appropriate to developmental level
(C) a lack of spontaneous seeking to share enjoyment, interest or achievements with other people, (e.g.. by a lack of showing, bringing, or pointing out objects of interest to other people)
(D) lack of social or emotional reciprocity

(II) Restricted repetitive & stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:

(A) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(B) apparently inflexible adherence to specific, nonfunctional routines or rituals
(C) stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements)
(D) persistent preoccupation with parts of objects


(III) The disturbance causes clinically significant impairments in social, occupational, or other important areas of functioning.

(IV) There is no clinically significant general delay in language (E.G. single words used by age 2 years, communicative phrases used by age 3 years)

(V) There is no clinically significant delay in cognitive development or in the development of age-appropriate self help skills, adaptive behavior (other than in social interaction) and curiosity about the environment in childhood.

(VI) Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia."


bookwormde

 

[jodifla]

I'm not sure where you are getting that from off the Internet....My clinician actually showed me a hard copy of the DSM, and it was in there.

 

[bookwormde]

This is the currnet version it has not changed. You may be looking at the one for classic Autism 299.00 I think.

bookwormde

 

[KPeveler]

I don't believe this is true. My DS 19 was diagnosed with Asperger's in June of 2009. We have been looking for help since he was in second grade. He never had the hand flapping, he is coordinated and very low on OCD behavior.

However, he does lack empathy, has anxiety, especially in social situations, has a high pain tolerance, cannot make eye contact (just fleeting glances), and has executive function issues to name a few.

The psychologists and speech therapists that have met my son know within five minutes that he has Asperger's. It became more apparent in high school.

Before his ASD diagnosis, DS 19 was misdiagnosed with ADD. He was given Concerta, a stimulant, which increased his anxiety. There is a fine line and you need a reliable professional. It took 10 years and FOUR psychologists, one psychiatrist and two school psychologists before one mentioned Asperger's. Now, all of the puzzle pieces fit together and we know how to help our son.

Use your mother's instinct and follow that. You know your child best of all.

This sounds like me - I was misdiagnosed as ADD/ADHD for a long time, and while I have some of those qualities, no one could figure out why the meds did not work - turns out I have sensory problems (seeking behavior) - as long as I am not bothered by a "sensory" thing, I can do the same thing for hours and hours on end. I have no natural impulse control, so it definitely looked like ADD/ADHD behavior.

As to the issue of "severe" social problems, there are so many entries in DSM that it is easy to be shown one, have someone see another, and have them be very similar. It's not terribly dissimilar to the medical coding - I have seen 4 or 5 different codes used for my one condition. It is possible that neither one of you is wrong, but that you are looking at two very similar yet different entries.

 

[deerhart]

"Remember, with ALL autism spectrum diagnosis, the social delay MUST be severe, there must be self stimulating behaviors (hand flapping, headbanging etc) or non-functional routines (must drive past a certain landmark no matter where going or can't function, almost OCD type behaviors)."


Sorry but this as about as far from the best practices standards for Autism as you can get even is classic autism diagnosis let alone Apsergers or PDD-nos. Yes they should display some repetitive or self stimulatory behaviors, but they can be subtle as long as they are an indication of functional challenges related to the disability. Social delay does not need to be "severe" but must have a significant impact on the individuals ability to function. Top clinicians can actually differentiate between innate social skills and intellectual compensatory social skills which is core since it is the lack of innate social skills and the neurological structures to learn them that is the core of Autism.

Clinicians who use this "I have read DSM-iv and therefore I can diagnose ASD" is the reason why so many of our kids get damaged by clinical incompetence.

Sorry again but if informed people read things like this it perpetuates the myths about autism and spreads clinical incompetence. I have had the opportunity to review the practices of some of the top clinical centers in the country and study pier review autism diagnosis qualification for research studies and I can assure you that all competent clinicians have moved past the stone age model of "he is not flapping and he can look me in the eye so he can't be Autistic".

bookwormde

The DSM IV requires marked delays in social functioning. The term marked = severe, so therefore an ASD does require a severe social delay. It's not my term, but the writers of the DSM IV. I did NOT use the term marked, because the general public does not understand what that term actual means.

Further, I never said that the child had to be flapping and not look you in the eye to be autistic. Rather, I stressed that the person must have either a self stimulating behavior OR a NON-FUNCTIONAL routine. I then listed some of the more common examples of how those behaviors exhibit themselves. If you read again, the DSM IV actual uses the phrase non-functional routine and again even uses hand flapping as an example

But then again, being hyperactive is NOT a self stimulating behavior (another example I have actually seen a clinician try to use). Neither is a functional routine (a simple example of the idea of a functional routine is putting your pants on before your shoes).

The biggest problem with the Autism diagnosis right now is that clinicians ARE NOT using the DSM IV to dx and they are extending the dx to cover behaviors and symptoms that are not autism. I have witnessed first hand the damage a clinician has done because they completely ignored the requirements of the DSM IV and went, well this child exhibits like other children I have seen dx with autism so it must be autism.

Heck, we can't even get the stats right in this country regarding how frequently autism presents itself. People hook onto a specific thing and decide that because this person has THAT they must have autism, without realizing that many of behaviors exhibited by a person with autism can also be caused by tons of other conditions.

Mind you, I was a head banger as a child (it was how I dealt with anxiety), my DH's cousin has a child who hand flaps, my oldest son could not make eye contact for years AND had echolalia. So we have covered the gambit on classical self stimulating behaviors of autism without an autism dx! Both of my children are dx ADHD (as pretty much are both parents) and it runs thickly through both our families. Evolutionary wise, it is no surprise that both ADHD and autism are on the rise AND that the conditions are getting more severe over time (due to the competitive advantage that some of the symptoms actually have in today's society and thus it highly increases the likelihood that people with the genetics for it will mate and have children etc..) But, these theories only work if you prescribe to a genetic/inherited thinking of where autism and adhd come from.

I would also mention that it is still possible under the DSM IV to have both ADHD and autism. The real trick is trying to determine which exhibited behavior comes/caused by which condition. But anytime your dealing with co-morbid conditions, it can become increasingly difficult to tease out what causes what.

You will also hear to ADHD referred to as a Condition of Rule outs in some discussions of the condition. This is because ADHD is usually dx when the clinician has ruled out pretty much all other causes for the behavior.

Best Practice and differentials information can be misleading for general consumption because these are more the tools to HOW the clinician makes the dx versus what is REQUIRED for the dx. Essentially best practice and differentials explain how the clinican determines if there is a marked impairment or not, NOT if the dx requires a marked impairment or not.

I know the DSM IV differential on aspergers discusses delays in fine motor control or lack of coordination as usually being seen in association with the condition. This does not suddenly mean that someone with a lack of coordination has the condition OR that this is required for the dx. Though there are many many laypersons who now believe that because somehow they have gotten the differential information and don't understand how to properly interpret that information.

Again, I will recommend to the OP that a full neuropsych evaluation be done on the child. Not only will it give you an enormous amount of information you don't already have, but it will be in a format that multiple clinicians can use.

Also, I would suggest the book The Mislabeled Child by The Drs Edie. Its written to be geared not only towards parents, but also to teachers and schools and ideas to help in the classroom when dealing with behaviors (no matter what they are called)

 

[deerhart]

As to the issue of "severe" social problems, there are so many entries in DSM that it is easy to be shown one, have someone see another, and have them be very similar. It's not terribly dissimilar to the medical coding - I have seen 4 or 5 different codes used for my one condition. It is possible that neither one of you is wrong, but that you are looking at two very similar yet different entries.

With minor changes, the DSM IV codes for Autism (classical) PDD-NOS, and Aspergers read exactly the same.

The difference between Aspergers and classical deals with the presence of a language delay and Aspergers defines what is a language delay (not putting together 2 word sentences by age 3, which is actually almost a 50% delay under the speech language dxs). PDD-NOS difference has to do with how many of the behaviors are present and in what combination (though I have not looked at the PDD-NOS criteria for quite awhile)

 

[bookwormde]

OP
As you can see there is lots if disagreements in this area so that is why it is so important to find a highly qualified clinical group that is in the mainstream. This is the biggest reason to educate yourself broadly.

Deerheart,

I suspected that you were a follower of Edie since much of what you put forward is in keeping with his views.

He has some great insight and positions as to not treating our kids as a label and dealing with the presented characteristics but unfortunately it is so contaminated by the bias that Autism genetics is not the basis for many of the characteristics presented that it renders his work so suspect that it is not widely accepted.

Best practices are very understandable and make it obvious that presentations do not have to be classic. "Marked" mean noticeable, measurable and with significant impact and in no way requires it to be severe.

An example is just that, one of a multitude of items which may represent a group.
I agree although rare it is possible for people to be both ADHD and ASD.

I agree fully that taking the time to find the cause of a manifestation associated behavior is essential, unfortunately the vast majority of clinicians do not take the time to do this, from my experience because they are not trained and competent to make these determinations. This deeper look is what has brought the many leading clinicians to the basic understanding that while there can be environmental causes, most are structural neurological based, and that they appear to come from the same multigenerational gene sets. Sometimes individual have discreet characteristics, but much more often there is variability across several areas with self adaptation and other cognitive factors playing a primary part in the severity of presentation and the associate impact on the individual. The most obvious examples are the great inventors and creative minds who it is widely accepted have the non linear EF gene set related to Autism, yet would certainly not be considered as having a disability even though it is well documented that they had areas of linear EF where they had clear deficits.

You have to have to have 2 items from I and 1 item from II each of III-V for a diagnosis so certainly no one characteristic makes a qualification.

It is pretty clear now that within 5 years we will have the genetic testing to tell and we will all know for sure if the bulk of the highly qualified clinicians are correct or those outside the mainstream and/or are not still using practices from 5 or more years ago are right. It has always been funny to me that the most resistant parents I work with are those who have some of the same characteristics (typically much more subtle) as their children and perceive Autism as only the most classic severe presentation when that only represents a minority.

Bookwormde

 

[DisMomAmy]

I didn't read through this whole thread, but wanted to share my experience with my DS6 (Zach). My DS9 (Alex) was diagnosed with PDD-NOS when he was two so I am experienced with autism & know what to look for. With that said, it took us until this summer to get DS6 (Zach) actually diagnosed with Aspergers. We saw the signs, had his evaluated several times but everyone was on the fence and nobody wanted to quite go all the way as to label him with Aspergers.

Finally we had him evaluated using the ADOS (Autism Diagnostic Observation Schedule) and the ADIR (Autism Diagnostic Interview-Revised) and it was very clear that he falls on the autism spectrum. The ADOS was the most telling as it was based on playing with Zach & making observations - as opposed to most of the other tools that had been used based on parent/teacher report.

Good luck finding the help your son needs.

 

[jodifla]

Ok, here's what I was thinking of.

http://www.psych.org/MainMenu/Resea...acticeRelevantChangestotheDSMIVTR/PDDNOS.aspx

These results supported a change in the wording of PDDNOS to revert to the original construct. The new wording in the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (DSM-IV-TR) is as follows:

“This category should be used when there is a severe and pervasive impairment in the development of reciprocal social interaction associated with impairment in either verbal and nonverbal communication skills, or with the presence of stereotyped behavior, interests, and activities, but the criteria are not met for a specific Pervasive Developmental Disorder, Schizophrenia, Schizotypal Personality Disorder, or Avoidant Personality Disorder.”. "

 

[irishsharon]

Anyone else ever experience this?
My son has seen numerous doctors, mostly neurologists, and they seem to believe that he has ADHD. It just don't feel that that is what is going on. I personally feel like he has Asperger's Syndrome.
Am I crazy? What should my next step be? When I mention it to the social worker my son sees he says that they are similar but that he def. has ADHD.
Is there anyway for this to be tested? Everything just seems to be based on opinions.

My DS8 has ADHD but I know that is not the whole picture.Like yourself I am so frustrated because there is so much more going on.I feel the Drs. found a med. that helps him focus in school but do not address anything else.I just don't want to keep going to a dr. every month for med. refill, this can't be all they do! My son's anxiety is never addressed,the fact that he has been recieving OT PT and speech since he was two. Come on something else is going on. Sorry for the rant but I am with you we have to do what ever it takes so we can help our kids because they are depending on us.

 

[Schmeck]

My DS8 has ADHD but I know that is not the whole picture.Like yourself I am so frustrated because there is so much more going on.I feel the Drs. found a med. that helps him focus in school but do not address anything else.I just don't want to keep going to a dr. every month for med. refill, this can't be all they do! My son's anxiety is never addressed,the fact that he has been recieving OT PT and speech since he was two. Come on something else is going on. Sorry for the rant but I am with you we have to do what ever it takes so we can help our kids because they are depending on us.

He's getting OT, PT, Speech - not sure what else he would be getting with a different diagnosis? Even if "something else is going on", he's already getting services for disability - are there more services, or different services you know about that you think will help your son?

What do you do at home to address the anxiety? Maybe pass that on to the doctor and the school so they can use your info to help him out?

 

[irishsharon]

He's getting OT, PT, Speech - not sure what else he would be getting with a different diagnosis? Even if "something else is going on", he's already getting services for disability - are there more services, or different services you know about that you think will help your son?

What do you do at home to address the anxiety? Maybe pass that on to the doctor and the school so they can use your info to help him out?

I am very lucky that my son recieves these services at school and am not expecting or looking for him to rcieve more. However I guess I'm just searching for answers as to why things have always seemed to be different like eatting, sleeping haircuts(nightmare) dentist(been a few times and still have not been able to get a cleaning done)We try to work on his anxieties by constantly reassuring him but its hard because we never know exactly what is going to upset him.He's first few months in first grade he would not drink anything in school because he did not want to use the bathroom also when a house down the street had a serious fire he did not want matches or candles(even birthday candles) in the house.I have tried Brain Balance he has a tutor(has a very hard time with math,still reverses many of his numbers)I guess in all honesty I just want to know I'm doing the right things.I just don't ever want to look back and think I did'nt do enough.

 

[Schmeck]

I am very lucky that my son recieves these services at school and am not expecting or looking for him to receive more. However I guess I'm just searching for answers as to why things have always seemed to be different like eatting, sleeping haircuts(nightmare) dentist(been a few times and still have not been able to get a cleaning done)We try to work on his anxieties by constantly reassuring him but its hard because we never know exactly what is going to upset him.He's first few months in first grade he would not drink anything in school because he did not want to use the bathroom also when a house down the street had a serious fire he did not want matches or candles(even birthday candles) in the house.I have tried Brain Balance he has a tutor(has a very hard time with math,still reverses many of his numbers)I guess in all honesty I just want to know I'm doing the right things.I just don't ever want to look back and think I didn't do enough.

Does OT and Speech know he has these issues? Speech can start oral therapy, OT can work on the haircut issue.

His anxiety - not to pry, but that can manifest from some sort of trauma, family issues, etc. I'm not looking for an answer from you for this private info! Just to give you something to think about! I've worked with kids who have had anxiety issues, and a lot of it comes from feeling insecure at their homes, even if the parents think everything is OK. Kids don't always see things the way the parent thinks they do. Can you ask your son what he is worried about when he seems very anxious? Can you write down what he says, work through the fear/anxiety with him, etc?

Google 'social stories' to see some of the booklets parents and teachers have put together to help anxious kids through situations.

If you are asking these questions about your son, you are definitely not in the category of 'not doing enough'! You sound like a wonderful advocate for your son.

 

[irishsharon]

Does OT and Speech know he has these issues? Speech can start oral therapy, OT can work on the haircut issue.

His anxiety - not to pry, but that can manifest from some sort of trauma, family issues, etc. I'm not looking for an answer from you for this private info! Just to give you something to think about! I've worked with kids who have had anxiety issues, and a lot of it comes from feeling insecure at their homes, even if the parents think everything is OK. Kids don't always see things the way the parent thinks they do. Can you ask your son what he is worried about when he seems very anxious? Can you write down what he says, work through the fear/anxiety with him, etc?

Google 'social stories' to see some of the booklets parents and teachers have put together to help anxious kids through situations.

If you are asking these questions about your son, you are definitely not in the category of 'not doing enough'! You sound like a wonderful advocate for your son.

Someone else on the board also brought up the possiblity of something in his life causing the anxiety.The only thing I can think of is that Dh has issues with his leg and because of this has been in the hospital many times.Also DH brother passed away suddenly when DS was 5.That same year we moved back to NY to be close to family and bought DH's brothers house.I didn't even think that this would be the cause of his anxiety because he was an anxious child before all of this happened.I just thought of something else DS was so excited to be a big brother and when BB was born he had two dislocated hips and had to wear a harness and then had surgery and a cast put on at four months.Because DS kept saying boo boo that became his BB nickname.I can't believe I did not see these as emotional trauma's to my very empathetic sensitive child.I guess I was so in the moment with dealing with the situation,and thinking he was to young. Now what do I do all of these things happened a few years ago the only thing is DH was in the hospital in may because of his leg.

 

[Schmeck]

Will your son comprehend a detailed explanation of your husband's leg situation, the baby's hip problems, etc? I've found that asking my kids a lot of questions about certain situations helps them process the ordeal better than waiting for them to formulate the questions themselves. When I was diagnosed with melanoma, I made sure they knew pretty much what I knew - they were 10 and 12 years old, and I let them ask me all kinds of questions too, even the big one - if I was going to die!

What I've found out while working with kids with all kinds of diagnoses is that kids' imaginations can be very strong, and a little misinformation can go a long way! The more anxious ones tend to look at the worst case scenario as the end of the world - and I try to get that scenario out of them, get it written down on paper, or on the board, and then brainstorm with the child how to deal with that situation.

Here's an example: (and it's a blend from many students, so as not to breach confidentiality)

Student is afraid to go through the lunch line. Refuses to even go in the cafeteria. Find out that the worst-case scenario is that he is afraid that when he gets in line, he'll either lose his money and not be able to pay, or drop his tray of food. He's scared that he'll lose his temper and make a horrible scene.

So, we role play. I pretend to drop a tray of food. I ask the pretend cafeteria staff for help cleaning it up. I don't have enough money, and ask for a voucher. I thank the pretend people that help me. I even pretend to get frustrated, and practice my calming down technique... Then we brainstorm for other unforeseen issues - like a fire drill during lunch, or a food fight, or not liking the lunch that was purchased.

We go into the cafeteria and meet the staff before it gets crowded and loud. I ask them, in front of my student, what would happen in the above situation. The staff now understands that the kid is anxious about stuff, and are quite willing to help him out. We even arrange a plan that the student can leave the cafeteria at any time to go straight to the nurse's office to calm down.

I hope these ideas help - anxiety is a big hurdle to overcome - I've got anxiety issues as well, panic attacks for the most part, so I really sympathize with my students that are anxious!