Not happy with diagnosis

[DVCisME]

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.

 

[ILoveMyGirls]

i asked my friend who has a child with these problems. here is her response for you.

"The child will need to be seen by a Developmental Pediatrician. Heartlight Healing Arts in Columbia is one also try Kennedy Krieger's in Baltimore. Most doctors won't diagnose a child on the Autism Spectrum unless they have SEVERE symptoms.

Go to the website Autism Speaks -- they used to have a checklist about autism and Asperger's.

What symptoms does the child have? A mom honestly knows best. Keep fighting for the child. I'm here for whomever needs support or guidance."

 

[Maggie'sMom]

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.

You mention neurologists, but has he been evaluated by a pediatric psychologist?

My DD's psychologist has said a couple times "There's no strep test for mental health disorders. We can't just swab her throat, send it out, and have the lab tell us what we are dealing with." While it may seem like everything is based on just an opinion, the evaluations do give a decent idea as to whether the child meets the diagnostic criteria for a specific diagnosis. The difficulty that exists is that there is so much overlap between different diagnoses, so opinion definitely gets involved there.

I'd recommend getting a second opinion, but it seems you've already done that based on your "numerous doctors" comment. If there is agreement between all the doctors you've seen, then that gives more weight to the diagnosis than if there was disagreement.

If you haven't involved a child psychologist yet, please do so before accepting or rejecting any diagnosis.

 

[DVCisME]

I have not been able to secure an appointment with a pediatric psychologist. I have attempted and continue to attempt to get an appointment though. My son has seen a pediatric psycholgist through the school but there was no diagnosis.
Also the doctors we have seen never to come up with a diagnosis. One neurologist ruled out autism based on a survey my husband and I. We filled the questionaire out while we were in the room with her and my son. She was evaluating him during this time. Hindsight 20/20, I would never do that again. One doctor stated that he showed AHDH symptoms.
The only docotr we were able to get an appointment with were his current social worker. Who is helpful, but he suggested we start him on medicine in May and is now suggesting upping it. Our pediatric doctor does not agree and will not do it. Ideally I would like more of a team approach.
My son has difficulty with transitions, socializing, following direction- he needs them repeated every step of the way, he is very literal, has frequent meltdowns, easily distracted, can not relate to others emotions... He is a great kid and very intelligent. However, we are having a very hard summer. Though I have been seeing doctors since last summer I feel like we have gotten no where.

 

[Maggie'sMom]

Keep trying for a pediatric psychologist or a developmental pediatrician. In our area, there's about a 5 month waiting list to get into a child psychologist, but it's completely worth it. Based on what you've described, I think you are correct in questioning the diagnosis.

 

[WheeledTraveler]

I would look for a developmental paediatrician. I don't know where in NJ you are, but there are definitely developmental peds docs in Philly and I'm sure there are in NYC as well, if you can't find anything closer to home. It will take some time to get in with one, but it sounds like it would be worth it for your son.

 

[gr8mommy]

I have not been able to secure an appointment with a pediatric psychologist. I have attempted and continue to attempt to get an appointment though. My son has seen a pediatric psycholgist through the school but there was no diagnosis.
Also the doctors we have seen never to come up with a diagnosis. One neurologist ruled out autism based on a survey my husband and I. We filled the questionaire out while we were in the room with her and my son. She was evaluating him during this time. Hindsight 20/20, I would never do that again. One doctor stated that he showed AHDH symptoms.
The only docotr we were able to get an appointment with were his current social worker. Who is helpful, but he suggested we start him on medicine in May and is now suggesting upping it. Our pediatric doctor does not agree and will not do it. Ideally I would like more of a team approach.
My son has difficulty with transitions, socializing, following direction- he needs them repeated every step of the way, he is very literal, has frequent meltdowns, easily distracted, can not relate to others emotions... He is a great kid and very intelligent. However, we are having a very hard summer. Though I have been seeing doctors since last summer I feel like we have gotten no where.

This sounds a lot like my own son, eventually diagnosed with NonVerbal Learning Disability. I am also in NJ, if you like you can PM me for information and names of doctors we've seen.

 

[deerhart]

neuropysch testing is probably the best way to differentiate between disorders.

ALL mental health conditions found in the DSM IV are diagnosed based on observation and input from other sources (teachers, parents, etc).

The basis for ADHD is the conners scale of behavior and there are also screening tests for autism.

The bad side of the behavior rating scales is that what is "normal" behavior for one person isn't normal behavior to another. Thus my kids conner scales from us (the parents) always rate lower then from the teachers (because their behavior is more normal to our families).

For example, my youngest son's conner sclaes from us averaged a 62, from his main school teacher a 75, from the vice principal a 72 and from the music teacher a 45 (music truly calms the savage beast!)

Also remember that children with ADHD will have problems with transitions, can have significant social skill problems (this is because they are either too inattentive and thus MISS the social cues or they are so hyperactive they are way to far ahead and misinterpret the social cue to go with something else).

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).

It is very very common for children with any form on inattentiveness to be unable to follow directions (because their minds wander from what they are doing).

BTW, my oldest son had tons of difficulties with transitions, is extremely literal, has moderate social skill problems (its moving closer to mild), used to have huge tantrums (longest was almost 10 hours), has difficulty controlling his emotional outbursts, cannot handle losing AT ALL or even making a mistake etc.. His dx is ADHD -HI, MERLD, and CAPD. Autism was ruled out several times and the final touch on it went through the neuropysch eval. But, his unique combination and how it exhibit mimics what you typically see exhibited by an Aspie, but he never had the self stimulating behaviors or the non-functional routines. He even exhibited echolalia (which we found out was the only way he could process sound for the longest time, his CAPD scores were so horrible). The CAPD was the key to everything for him.

 

[DVCisME]

My son gravitates towards adult. He talks nonstop. He recently started having "accidents"- completly goes to the bathroom in his pants. And I would consider the tapping of his fingers with his thumb his self-stimulating behavior.
Please, do not get me wrong, I am not hoping for a certain diagnosis. I just feel like my son is not getting the help he needs. It has been an extremly hard summer, which of course is because of our lack of structure.

 

[tweedlemom]

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.

Sent you a PM

 

[ILoveMyGirls]

my friend said she just emailed you back.

 

[DVCisME]

I got both the pm and your friend's email. Thank you both very, very much.

 

[LockShockBarrel]

Please no flames..

I always gravitated towards adults when I was little ( I tended to think they were less mature and stupid), and was a horrible fidget. I was super quiet to the point of ignoring people til I felt comfortable around them, then you couldn't shut me up. I wasn't diagnosed with ADHD til I was 17 and that was by my psychiatrist. I was seeing him and a counselor very regularly for depression. Never was any type of Aspergers or Autism or anything ever mentioned.

Obviously in the recent years, more and more syndromes and spectrums and all that have become more common diagnosis, and people are starting to understand them more. I just read an article basically saying the classification of "normal" is shrinking from an ocean to a puddle, because every quirk or uncommon behavior has a name and symptom list now. I guess my point is...do you need a diagnosis? Does your childs issues/behaviors need a name? Maybe he's just quirky. If the issues are having an impact on his life and how he lives it, certainly look further into it, but if its just little things, maybe it'd be better to let it go. He may grow out of it. I think at a certain point, if you're going to doctor after doctor, eventually a child might start thinking "There really must be something wrong with me...why else would I have to go to the doctor this much?"

Not trying to judge, or be offensive, just my perspective.

 

[DVCisME]

Please no flames..

I always gravitated towards adults when I was little ( I tended to think they were less mature and stupid), and was a horrible fidget. I was super quiet to the point of ignoring people til I felt comfortable around them, then you couldn't shut me up. I wasn't diagnosed with ADHD til I was 17 and that was by my psychiatrist. I was seeing him and a counselor very regularly for depression. Never was any type of Aspergers or Autism or anything ever mentioned.

Obviously in the recent years, more and more syndromes and spectrums and all that have become more common diagnosis, and people are starting to understand them more. I just read an article basically saying the classification of "normal" is shrinking from an ocean to a puddle, because every quirk or uncommon behavior has a name and symptom list now. I guess my point is...do you need a diagnosis? Does your childs issues/behaviors need a name? Maybe he's just quirky. If the issues are having an impact on his life and how he lives it, certainly look further into it, but if its just little things, maybe it'd be better to let it go. He may grow out of it. I think at a certain point, if you're going to doctor after doctor, eventually a child might start thinking "There really must be something wrong with me...why else would I have to go to the doctor this much?"

Not trying to judge, or be offensive, just my perspective.

Thank you for your perspective. My son states that he is different from the other boys and girls, and that breaks my heart. AT points he is a danger to himself and others- i.e. he has slammed his head repeatedly against the car window. He cannot hold a pencil, has poor motor skills, is uncoordinated. He gets so upset and I believe that is not healthy. I agree if I could do everything possible to take that all away without a diagnosis I would. I am just trying to help him. Thank you again!

 

[SmallWorld71]

Thank you for your perspective. My son states that he is different from the other boys and girls, and that breaks my heart. AT points he is a danger to himself and others- i.e. he has slammed his head repeatedly against the car window. He cannot hold a pencil, has poor motor skills, is uncoordinated. He gets so upset and I believe that is not healthy. I agree if I could do everything possible to take that all away without a diagnosis I would. I am just trying to help him. Thank you again!

FWIW- Both DS14 and DNiece16 have ADHD for which they take medication. Their fine motor skills are great and DS is the most coordinated, by far, of all the kids. He could actually roller blade before he could speak! He also has auditory processing difficulties. I don't think they see each other as "different" from the other kids. What you are describing just doesn't sound like ADHD to me, although I am hardly an expert.
You mentioned he started meds in May. Has is helped at all?
Also, has your son ever been evaluated by an OT? Maybe they would find something that would help others take you seriously. DNephew11 has SID and everyone from the schools to the Dr.'s were quite insistent that is was ADHD, especially since his sister already had that diagnosis. But, medication did nothing. He had an OT eval. done which showed a lot of areas of concern and then finally things began to happen.
While I understand the PP's point about a diagnosis not being needed, unfortunately to get the proper services, you usually need the diagnosis. Keep trying and hang in there!

 

[bookwormde]

Make an appointment at Kennedy Kreiger in Baltimore (part of Johns Hopkins) they are by far the best center in the region. 90% precent of clinicians who evaluate our kids are not compitant and that is why mor ethan 50% of our kids are misdiagnosed as ADHD intially until their anxiety levels rise to the point where it is doing clincal damage.

bookwormde

 

[bookwormde]

"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

 

[ILoveMyGirls]

although there may be mis-information in this thread she is getting good guidance from my friend who has a child with multiple disorders thru personal communication, not from these threads. if she had not posted, i would not have been able to hook her up with my friend who is the mom of a child with issues like her child has and will be able to steer her in the correct direction.

"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

 

[bookwormde]

Just be careful, lots of poeple do everything they can to avoid the practical reality that autism genetics is the basis for the majority of social skills, EF and Sensory issues, even though they do not combine to reach the clinical diagnostic level for Autism. The best supports and therapies are the same but are often avaoided becouse of the "stigma" of Autism. The genetic mapping is moving forward (just follow the NIH daily reports) so it is likely that withing 5 years all those who say it can not be a characteritic of the autistic genetic set will have to deal with not having gotten the full "spectum" fo supports that there children needed to florish.

Yes I have gotten lost of information from parnets of kids whos primary issue is sensory and who's kids of other characteritics (EF. Social) are secondary. A formal label is not what is important (except for inurance companies and schools) it is providing the best support for each characteristic without soialogical bias to limit the scope.

bookwormde

 

[ILoveMyGirls]

my friend won't steer her wrong as she has been thru all of the loops to find the correct diagnosis and care for her child.

Just be careful, lots of poeple do everything they can to avoid the practical reality that autism genetics is the basis for the majority of social skills, EF and Sensory issues, even though they do not combine to reach the clinical diagnostic level for Autism. The best supports and therapies are the same but are often avaoided becouse of the "stigma" of Autism. The genetic mapping is moving forward (just follow the NIH daily reports) so it is likely that withing 5 years all those who say it can not be a characteritic of the autistic genetic set will have to deal with not having gotten the full "spectum" fo supports that there children needed to florish.

bookwormde